Most of us are well aware of America's mental health crisis, but lack to tools to support each others and help ourselves.

As mental health specialist and CDC Children's Mental Health Champion Patrice Beard shares, learning to spot the pink flags - those early warning signs that show up before the big red flags - can make a big difference!

he Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

988 LIFELINE: 24/7 Support for suicide and crisis prevention. Using the 988 Lifeline is free. When you call, text, or chat the 988 lifeline, your conversation is confidential. The 988 Lifeline provides judgement-free care. Talking with someone can help save your life.

Mental illness warning signs and symptoms.

Understanding what depression looks like in teens.

National Alliance on Mental Illness (NAMI)

NAMI Virginia

More about Kevin Hines, who attmepted to kill himself by jumping off the Golden Gate Bridge and is now a powerful advocate for suicde prevention.

Centers for Disease Control statistics on children's mental health

REALISTIC Self Care Strategies for Caregivers

How dangerous are phones and screens for teens?

TRANSCRIPT:

01:00:06:18 - 01:00:35:11

Erin Croyle

Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. It's something I became intimately familiar with when my first child was born with Down syndrome in 2010. Now I work with the center for Family Involvement Advocates partnership for people with disabilities.

01:00:35:13 - 01:01:05:09

Erin Croyle

This podcast explores the triumphs and hardships that we face. We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. But there's no sugarcoating of the tough stuff. Sure, we can do hard things. There's a whole podcast dedicated to the idea, but this caregiving life that we're living, it is next level. It's all consuming in a way that no one can understand unless they're living it too.

01:01:05:11 - 01:01:39:07

Erin Croyle

We're so busy doing the hard things, thinking this is just how it is, that we don't even realize how tapped out and burnt out we are. This is why I had to have the CFI's mental health specialist and one of the CDC's children's mental health champions, Patrice Beard, on the show to talk about how we can better support everyone from those close to us, to acquaintances, to strangers, to ourselves.

01:01:39:09 - 01:01:56:03

Erin Croyle

Patrice, part of what makes what we do at the center for Family Involvement so unique is that all of us have lived experience that informs our work. Can you tell us how you got started down this path to mental health awareness and education?

01:01:56:05 - 01:02:17:02

Patrice Beard

Sure. I started off. I had been off work for a few years. I had originally worked for a medical home, plus, and I got familiar with Danny Yarbrough, our Dana, and, I was looking for a job, and she said, hey, the Partnership's got some admin opportunity part time. Do you want to come work for us? I was like, sure.

01:02:17:02 - 01:02:43:05

Patrice Beard

So I started working for Admin Center for Family Involvement and got familiar with the center for Family Involvement. What they do, and then reaching out and helping families and that whole lived experience. I realized that there was nobody on the team. What that mental health look experience that I had. And so then we talked and I said, you know, I can help families with this.

01:02:43:05 - 01:03:11:08

Patrice Beard

And she said, okay, well, you'll have to go through the navigator program. So I started talking to families and helping families through that. And then at the partnership, I was struggling. One day I came into work and I was having my daughter, who has some mental health conditions. I was just struggling with her in school and somebody said, hey, have you heard of NAMI, which is the National Alliance on Mental Illness?

01:03:11:10 - 01:03:37:15

Patrice Beard

And I realized I had all these amazing programs for families. So I started taking these programs. So I took like family, a family, I took children's challenging behavior. And this was so amazing. And I was sitting in a room with other families who knew my exact experience and who I could talk with, and I could learn. It was an amazing to me that there were all these people that had the same kind of experiences that I had.

01:03:37:17 - 01:03:59:03

Patrice Beard

It was just awesome. So I just started soaking it up and taking all these classes. I'm like, okay, I like classes so much now I'm going to learn how to teach them. I would take the training, the trainer classes, and through all of these processes, I was able to get better and better at understanding how to handle and how to handle the situation with mental illness and my daughter and then my family.

01:03:59:05 - 01:04:27:03

Patrice Beard

And then I was using those resources to help other family members that would call in to the set up for family involvement. From there, it just kind of snowballed. Anything I could get Ahold of and learn and take and get a certification in is what I would do. With that, Dana saw that, she just allowed me to grow, and then it just kind of developed, and then she kind of said, hey, I think we need a mental health specialist on staff, and here you are.

01:04:27:04 - 01:04:49:16

Patrice Beard

So I was able to join the center for Family Involvement team as a mental health specialist. So that's what I do now. And I'm still always taking webinars, and I'm always trying to learn more things so I can help families ultimately, as always, to help families. And now I'm on boards like the Department of Behavioral Health Mental Health Advisory Board.

01:04:49:18 - 01:05:01:01

Patrice Beard

I'm asked to do presentations. And so it's amazing. So it's really totally just from all of the experience and having the opportunity at the partnership to evolve.

01:05:01:03 - 01:05:34:19

Erin Croyle

Amazing. I'm going to mute real quick and close my door. My mom is visiting, so it's normally really quiet in my house. And she's puttering around in the background. And it's a really beautiful thing I don't get to experience and I love it, but I had to close my door. I want to explain for our listeners, you know, we talk about family navigators, and that's part of what makes the center for Family Involvement so unique, so we have staff who specialize in many things, but we also have volunteer family navigators who are trained.

01:05:34:21 - 01:06:01:06

Erin Croyle

And the beauty of family navigators is that they also bring in lived experience, and we're able to connect people who reach out to us. So I'll put that information in the show notes for y'all so people can reach out to us and we find other families with lived experience similar to yours to connect to. And it's such a beautiful thing that even us as colleagues will reach out to one another.

01:06:01:07 - 01:06:21:16

Erin Croyle

Just yesterday, I was struggling with something and I reached out to Nikki Brandon Berger, who is my supervisor, and I said, hey, you know, if you know anyone going through this, like, I'm really struggling, can you help me? And it's a very unique thing because when you mix disability and mental health and caregiving and aging parents and.

01:06:21:18 - 01:06:24:16

Patrice Beard

All of it.

01:06:24:18 - 01:06:48:19

Erin Croyle

It's a lot. And there's not a lot of help for people out there. And I know, like a lot of professionals that we see in the field, they don't have that lived experience. And that's what's so beautiful to me about the work that we do. In fact, you know, Patrice, I'm always looking for reasons to talk to you because I adore you and you just cut through the B.S. and you always tell it like it is.

01:06:48:21 - 01:07:13:06

Erin Croyle

And I wanted to talk to you today because there was a moment a few months back when we were all in a staff meeting together, and there was an icebreaker question asking folks to mention their proudest accomplishments of the years. And, you know, all of us have tough times. I'm telling my kids this all the time to look out for the people around you because we put on brave faces, but we don't know what's going on behind the facade.

01:07:13:08 - 01:07:30:08

Erin Croyle

And I tried to casually say something in that meeting like, I made it, or I'm still here, and you call me right after that meeting to ask how I was doing. And we hadn't talked for a while. It's not like we call each other every day or every month. It's like a couple times a year that we really talk.

01:07:30:09 - 01:07:52:13

Erin Croyle

And so that phone call meant so much to me. And you said that my answer to that question raised a pink flag for you. And that was just such an intriguing concept that I've been wanting to talk to you about it on the podcast. So here we are, and I want to know, what exactly is a pink flag?

01:07:52:15 - 01:08:21:19

Patrice Beard

To me, a pink flag is when you know something's off, something's different. There's a concern. It's easy for me to have a pink fly with you because I know you and I know I'm in meetings with you. I know your personality. Sometimes having a pink flag is just being really intuitive and just watching. Just observe things. So when you commented the way you commented, that's not typically how you comment.

01:08:21:21 - 01:08:44:07

Patrice Beard

That's not a standard answer for Erin. I'm here is not a standard answer for Erin. I could actually hear a break in your voice when you said it, but I don't know if anybody else noticed that. And so I was like, oh, something's up. Something's up with Erin. And that's how easy a pink flag can be. And it's taking that step after.

01:08:44:09 - 01:09:07:13

Patrice Beard

And reaching out, whether it's a phone call, whether it's a text and just saying, are you okay? Sometimes that's all anybody needs to hear. Are you okay? Something's up. But you want to talk to me or not? I'm here. Are you okay? That means a lot to people. I was with my friend at the store. I forgot where we were.

01:09:07:15 - 01:09:28:12

Patrice Beard

The cashier was. She was just very abrupt and she was just very cold and rude, but she was just very blunt. I try to make small talk with her and she just wasn't having it. And I guess some people could think, well, she's just, you know, having a bad day or is she just being a jerk or, you know, whatever you want to say.

01:09:28:12 - 01:09:54:10

Patrice Beard

But, you know, when people react a certain kind of way to you and you don't even know who they are, it's probably not about you. It's just probably there's something going on. So don't take it personal. But I stopped and I looked at her and I said, are you okay today? How's your day so far? And immediately she like, almost like it was a jarring her whole personality change.

01:09:54:10 - 01:10:10:22

Patrice Beard

Like she wasn't even aware the energy she was giving off. I think she was in her brain with what? Whatever was happening, you know, whatever she was going through at that time. But as soon as I said that to her, she just kind of smiled and she kind of came out of it and she goes, thank you. Okay.

01:10:10:24 - 01:10:30:04

Patrice Beard

And then when I left, my friend was like, wow, that's impressive. Like she just kind of snapped out of it and she just that really quick. Whereas you see things on TikTok and you see things like videos where people kind of go at it. I just kind of, you, when somebody is kind of has a high energy, I just kind of kind of come in with a low energy.

01:10:30:06 - 01:10:58:01

Patrice Beard

That's how I look at it mainly. But for you, Erin, I just know you. And just at work, when I know people at work and they look different and they look not that they're sad or but they're more serious if they don't respond in a way they normally respond. Those are pink flags for me. If they're not talking at all and they usually do that, they're sitting off to themselves and being quiet.

01:10:58:03 - 01:11:14:17

Patrice Beard

That's a pink flag to me. So if I had to describe a pink flag, I would say if you know somebody and they're acting any kind of differently. Ask them. Ask them how they're doing. Ask them what they're going through and just go from there.

01:11:14:19 - 01:11:35:07

Erin Croyle

I love that and I wonder you know thinking of those situations and thinking how different people are. I think you already said this, but I kind of want to dig a little deeper. You want to ask them how they are, but you want to. I mean, I imagine you want to give them space to not have to respond, right?

01:11:35:07 - 01:11:53:23

Erin Croyle

So because they might like I know I cry so easily that sometimes I need to hide because I, I just don't want to have to break down in public all the time. So how do you how would you suggest the most gentle ways to do that, to allow someone the space they might need?

01:11:54:00 - 01:12:19:02

Patrice Beard

Oh that's easy. I mean, it's not that hard, is what I want to say. When I help families, who are dealing with mental health conditions in their household, what I'll say is, did you ask, have you asked? And a lot of times they're like, well, no. And it's so it's so obvious. So. Let's take this back.

01:12:19:02 - 01:12:38:15

Patrice Beard

Let's just say I called you asking, and I said, Erin, how are you doing? Or you okay, are you okay? And you're like, I'm fine not to talk about it. I'm good. Okay, then call then. Just. All right. That sounds well. Okay. I just was checking in and just know that I'm here, and then that's all it takes.

01:12:38:15 - 01:13:04:05

Patrice Beard

That's all it takes. I recognize you, I see you, and I'm here for you. You want to call me, text me. Whatever. I'm here. I have some friends. Joan Bruner, she's one of our regional network coordinators at the center for Family Involvement. I know she is a very proud private person, and she is someone that when you reach out and say, hey, are you okay?

01:13:04:05 - 01:13:28:19

Patrice Beard

I'm fine if I like. She just wants to stay busy and she's fine. And that is her personal. And I have to respect that. So we have a code. So when she is feeling, you know, really overwhelmed and she doesn't want to ask for help, but she needs help. The code word is butterfly. So I just told her, I know you don't like to ask for help.

01:13:28:19 - 01:13:52:01

Patrice Beard

I know you're very private person, so if you need me to literally get in the car and come to you wherever you are, but you don't want to talk about it, then you text me butterfly and I will. I will be in the car and I will be to you. So that's an extreme version of it. But you can come up with those kind of things too, if you need to talk.

01:13:52:01 - 01:13:58:24

Patrice Beard

If you need me to just listen, then here's our code word. If you know somebody.

01:13:59:01 - 01:14:22:03

Erin Croyle

I love that. So I like to code word situations that pop in my head are, one, I'm literally on the third round of watching Ted Lasso, once by myself, once with my kiddo, and now with my mom who's in town, because it's just such a beautiful show that touches on mental health and their code word for just speaking the truth is Oklahoma.

01:14:22:04 - 01:14:40:23

Erin Croyle

Just cut through the crap and give me the truth. And then another code word in my house for me and my children. When you reach that level of like when you have kids, and sometimes it's like you have to say, come on, let's go, let's go. When you feel it boiling over, instead of letting it boil over, we say Vegemite.

01:14:41:00 - 01:14:58:09

Erin Croyle

And that's like, I mean, business. But they're allowed to say Vegemite to me, to say, mom, you got to get off my back. I heard you, you know, you're making me boil over and it's those safe words. I think code words are a tool that folks don't use enough. And I think it's a really powerful tool.

01:14:58:14 - 01:15:09:04

Patrice Beard

Absolutely. For us is awesome. I love Ted Lasso. I really like Schitt's Creek. A lot of that has some mental health pieces in it. I just love it. It's just mixture, warm and solid. I really like it.

01:15:09:06 - 01:15:30:04

Erin Croyle

Yeah, and Shrinking is another one. I don't know, folks. It's I mean, it's we might as well just let Apple TV sponsor a podcast for us because they got some great material there that I think when times are tough, you know, leaning on shows that make you feel good is a really great escape, which is a total tangent.

01:15:30:04 - 01:15:36:17

Erin Croyle

But since we're saying and I mean, what are some other really great escapes for tough times that you might recommend for somebody?

01:15:36:23 - 01:16:00:11

Patrice Beard

It's hard for me to recommend anything to anybody because everybody's different. Everybody's self-care is different. Everybody relaxes differently Decompresses differently. Sometimes my decompression is I'll just get on my iPad at the end of the day, if I've had a hard day and I just play silly games just like match three games or, you know, something like Candy crush or two.

01:16:00:17 - 01:16:24:07

Patrice Beard

My kids used to make fun of me, but I'm like, I just need just to numb my brain out and not have a focus. I don't want to talk. I don't want to do anything. Just let me sit here and do this. I know some people. It's going for a walk. I know some people. It's weird. People it's for cleaning, right click cleaning or extra stuff, which is totally not my vibe at all.

01:16:24:09 - 01:16:49:00

Patrice Beard

Whatever brings you joy, whatever decompresses you, whatever is your thing, do it. My brain really likes the water and the ocean, so after a while, a couple months goes by. I'm like, all right, I need to take a trip to get to the ocean. I need to get somewhere where I hear that that is my meditation. Nowhere else for some reason.

01:16:49:00 - 01:17:10:17

Patrice Beard

Even the app on the phone. No, nothing else does for me what the beach does for me. That I can sit and close my eyes and just listen and just. It just takes me, just takes me and I love it. So that's the water is is my place. Some people probably like you like to exercise and run and do all these crazy things.

01:17:10:19 - 01:17:32:05

Patrice Beard

So yeah, it's hard for me to recommend anything like that. I would recommend whatever you are doing to be mindful in that act, and try to just focus on it. Being mindful is really easy to do. That was a big hot word there a couple of years ago when everybody was making, you know, like talking, have seminars on it.

01:17:32:09 - 01:17:54:18

Patrice Beard

It's very easy. It's just focusing on what you're doing. That's it. Try to get all the extra outside noise. That's why the beach helps me. I just focus on the noise. So if you're running, if you're going for a walk, then you're focusing on nature. You're focusing on what you're seeing, what you're hearing, what you're smelling. Just focus on that and try to get all the extra noise out.

01:17:54:20 - 01:17:57:18

Patrice Beard

That's the noise, noise, noise, right?

01:17:57:20 - 01:18:23:18

Erin Croyle

It's funny you say that because as someone who has been diagnosed with ADHD later in life, I struggled so much with trying to meditate and trying to do all the things that people recommend that they say are good for you. And what I have found is my meditation is you got me nailed, it is running and it's running, blasting whatever music makes me feel better.

01:18:23:18 - 01:18:47:11

Erin Croyle

And a lot of times, man, it was Kendrick Lamar's Super Bowl halftime show blasting that with my kids in the car or on a run, or when the world just makes me angry, blasting some rage Against the machine. I come back and I am calm. And so I love that you said it's you can't say what works, it's what works for you.

01:18:47:12 - 01:19:16:05

Erin Croyle

And and it depends on the mood. Because some days it's going for a hike in the woods without any noise. It just depends on on the day. And you know, our show is for caregivers. And so this is helping identify for our children. Like, for example, my son, my oldest has multiple disabilities, Down syndrome. It's hard for him to communicate his needs, but his happy place is by the water throwing rocks in the water.

01:19:16:05 - 01:19:35:17

Erin Croyle

And so we try to get out whenever we can. Going by a waterfall, I think. Water. I talked to another one of our colleagues, Jill Rose. Let's just namedrop all of our people, right? She talks about how she's a very spiritual person and how water is just something that can really soothe us as humans and soothe our aura, if you will.

01:19:35:17 - 01:20:11:09

Patrice Beard

So anything that you can use your senses, your other senses for is amazing. I always feel like sometimes the hardest place to be is in my own head. And I have to do things that force me to get out of my own headspace. It's kind of easier for me to sit in my headspace. I have to make an effort to get my shoes on and get dressed and go outside and go for that walk, or go get in the car and drive two hours to the water.

01:20:11:11 - 01:20:50:03

Patrice Beard

It's much easier just to sit at home. But I have to make myself a priority because if I don't and so much time goes forward, I just sink lower and lower and lower. And I always tell people practice what you preach, but I'm the worst person. You have to take the time to fill your well. If you don't fill your well, for me, filling my well is, maybe watching Schitt's Creek or maybe going to the pool in the summertime, getting that sun, going to the beach.

01:20:50:03 - 01:21:09:06

Patrice Beard

That's how I fill my well. And if I don't take the time to do that, then I just don't feel like I'm a good person. So much time goes forward and I'm like, handing out dirt, you know? I'm just like trying to help people with the bottom of my well, and that's why it's so important that I take the time to do what I do.

01:21:09:08 - 01:21:35:03

Patrice Beard

It's a tricky thing. The brain is a tricky thing. You can as many bad things as we say to ourselves internally. For me, I know like I can be that person. It affects your brain, right? So if my in dialog is constantly negative, then I'm going to just feel that. Why can't my inner dialog be positive? Why can't I feel myself positive?

01:21:35:03 - 01:22:06:01

Patrice Beard

But for some reason we we tend to do the negative. I don't know if it's easier for us. It's harder for us to look in the mirror and find something that we like because of the way we're feeling, but we really need to do better with that. I think I know when my daughter, when she was young and she used to look at herself in the mirror and she'd say, I hate this, I hate that, I hate this, and I'm like, okay, so now look in the mirror again and I want to hear you say like five positive things about what you like about yourself.

01:22:06:03 - 01:22:31:12

Patrice Beard

I was listening to a podcast one time about how to retrain your brain to be positive, how you can literally do things, say things to yourself to bring your mood up right, and to get out of that crud. And it's weird. So one of the things was like, brush your teeth with the opposite hand. That kind of stimulates your brain because your brain rewires, restarts, regenerates your brain, right?

01:22:31:17 - 01:22:58:24

Patrice Beard

Something with your opposite hand. It's awkward, right, to do things with your opposite hand. That's really good for your brain. Yeah. Another thing he said to do was, look, this was the hardest thing for me. Look in the mirror. Look at yourself. Stare at yourself in the mirror and tell yourself out loud that you love yourself. Just say I love you to yourself in the mirror at least five times.

01:22:59:01 - 01:23:23:09

Patrice Beard

And I did it. I don't keep doing it because it's awkward, but like the third or fourth time I said it, I got chills and I started crying. Because I realized, I don't think I've ever said that to myself before, so I would recommend everybody do that. I just think all the negative things we said, our self and our inner dialog so negative.

01:23:23:09 - 01:23:39:21

Patrice Beard

I would challenge you every time you catch yourself doing that to say something positive, to counteract the negative and just see what it does. But I recommend, Erin, that you today, at some point out loud, look at yourself in the mirror and tell yourself that you love you.

01:23:39:23 - 01:24:03:10

Erin Croyle

I love that idea. I can see how challenging that would be. And I think as parents you recognize how important that is. But you don't do it for yourself because you see how hard your children are on themselves. We're so busy modeling what we I think what we should be modeling for our kids, but we're not truly believing it.

01:24:03:12 - 01:24:17:20

Erin Croyle

So the idea that you would take time to actually practice what you're preaching and truly mean it, I will try that. The self-hate. I don't know where we learned that from, but man, we are our hardest critics, aren't we?

01:24:17:22 - 01:24:38:13

Patrice Beard

Oh yeah. Absolutely. Talking about pink flags. I would agree, Erin, with what you just said because I think. Spotting a pink flag and others is probably a lot easier than spotting a pink flag in myself, even though.

01:24:38:15 - 01:25:07:10

Patrice Beard

It's pretty apparent. So I don't know why. Why are we so likely to observe things and others that we're not willing to observe in ourselves? It's a good question, because I think I'm exhibiting some pink flags here lately. I'm stressed. I'm having a hard time focusing, not exercising like I should. Staying in the house too much.

01:25:07:10 - 01:25:23:04

Patrice Beard

I get little reclusive, but I recognize that in myself. I feel like there are times I'm exhibiting pink flags all over the place, so I don't know enough, and I'm not attending to them like I would others. So I guess that's something we should all work on.

01:25:23:06 - 01:25:47:12

Erin Croyle

Yeah, and I think especially as women, because as women we are conditioned from day one to be nurturers, to care for others. I and I think it gets tiresome to hear about the mental load we carry, but it needs to not be because we do carry more typically speaking, than a lot of our counterparts. And it's a lot.

01:25:47:12 - 01:25:58:09

Erin Croyle

And I don't think we give ourselves enough credit for how much we take on that is just assumed that we can handle it.

01:25:58:11 - 01:26:34:10

Patrice Beard

I would say the reason why pink flags are so important in recognizing that is because in the mental health world, we tend to be reactive and not proactive. So if we focused on the proactive, the proactive would be recognizing the pink flags and addressing the pink flags. Is this person securing themselves? Is this person is our hygiene going to, you know, and that you clearly see that they're not taking care of themselves anymore?

01:26:34:12 - 01:26:56:13

Patrice Beard

Are they withdrawing? Those are like pink flags that in the mental health world they're warning signs, right? Are they crying all the time or have you not heard from them for a couple weeks? And have you ever had that experience where, like, I've not heard from so-and-so for like a while now? Well, I think that's a pink flag.

01:26:56:13 - 01:27:19:04

Patrice Beard

I think that is your pink flag. That is your it's time to text. It's time to make a phone call and just reach out if you haven't answered your phone. Erin Other just texted you. That's all it would have been. Hey, I'm here. Just wanted to check in everything okay? Instead of reacting. Like I said, in the mental health world we are very reactive as opposed to proactive.

01:27:19:06 - 01:27:48:12

Patrice Beard

And so when we hear things in the media or we hear things extreme, my question is what were the pink flags? Because I know there were some, you know, and usually when the story comes out and more information comes out and you start hearing experiences that the public have had with an individual or anything like that, there were pink flowers along the way.

01:27:48:14 - 01:28:15:10

Erin Croyle

What would you say the difference is between a pink flag and a red flag? When we're talking about mental health, especially considering my understanding of how, suicidal ideation, a lot of times people don't see it coming. So, you know, when you're saying hygiene and staying in more, what's red? What's pink? And it sounds like it's a big old lots of different shades that we're dealing with on a spectrum here.

01:28:15:12 - 01:28:41:12

Patrice Beard

Yeah. You're right, pink flags are different for everybody. The pink flag for me was you, Erin was that you responded all right. You didn't respond like you would normally. And I knew enough to know that. And I could hear the break in your voice. So that was a pink flag. If I'm living with somebody, their mood changes for a long period of time.

01:28:41:14 - 01:29:01:05

Patrice Beard

If they don't want to go out and do anything and that normally they would, if they're not sleeping, if they're pacing well, you know, normally at night instead of sleeping, they're not they're tossing and turning. They're up. They're not getting their rest of their sleeping habits change. Things like that can be pink flags leading to a bigger issue not eating right.

01:29:01:07 - 01:29:23:03

Patrice Beard

And what's important to know is there are circumstances in our lives that we all go through things right? Like if there's a death in the family, a job loss, we all go through things. I'm talking about things that change us for over two weeks. It is ongoing and we are just not getting better. Those are the things I'm referring to.

01:29:23:05 - 01:29:49:06

Patrice Beard

Angry a lot of times. I'll tell you a lot of times for women, we cry sometimes, right? That's our pink flag. We're sad. We're depressed. We miss the pink flags with boys because they tend to be angry. They tend to all of a sudden, if you have a boy that's wanting to fight, they're starting to get into a lot of fights in school or being argumentative or just angry.

01:29:49:08 - 01:30:09:05

Patrice Beard

And they don't know why they're angry. They're just angry. That's a form of depression. And it's just so different. A lot of times in boys and men. So things like that, like if you notice somebodies personality changing and things like that, those can be pink flags.

01:30:09:07 - 01:30:34:13

Erin Croyle

And when you see those, I mean, it's thankfully the stigma around talking about mental health is lessened, but it's still there. You know, it still gets an eye roll or the brush off. So how can we talk about mental health in a productive and proactive way? How can we get that loved one or close friend? It's not as easy as saying, oh, that's a mole.

01:30:34:13 - 01:30:41:13

Erin Croyle

You need checks, right? How can you get someone the help they need? Whether it's a pink flag or a red flag?

01:30:41:15 - 01:31:12:15

Patrice Beard

I really think that's the million dollar question. I still think we have a long way to go with that. I think just letting somebody know that we're here for them, whether it's using a code word or, sometimes we want to fix things, and sometimes we just need to remember that if you just let somebody know, if you just want to talk, and I'll just be here to listen, sometimes you just want to talk and just have somebody listen to you.

01:31:12:17 - 01:31:32:07

Patrice Beard

You know, when we're going through stress and I've got something in my head going over and over and over and over. Never. Right? Works both ways. I have to say to my spouse or to my friend, I'm going through something right now and I really want to talk about it. I really need to vent. I you open to hearing me right now.

01:31:32:07 - 01:32:17:08

Patrice Beard

Are you in a good headspace to hear me right now? Can I vent with you? You don't have to say anything, but do you have the head for right now? And she's either yes or no. And then if it's yes, then I've been just trying to be there for one another and just being and just listening. You would be surprised how just giving somebody an ear and just sitting and listening, and also being a mental health specialist, I have to say, if ever you feel like after somebody is talking to you, if ever there's a question, if ever anybody says anything about hurting themselves or not wanting to be around or wondering if life would

01:32:17:08 - 01:32:46:02

Patrice Beard

be better without them around or wanting to end their suffering or things like that. Always ask the question like, I hear you saying these things. Do you feel like, are you thinking about killing yourself or hurting yourself? Don't say committing suicide or don't make it fancy. Don't say don't use. Just be very blunt. I'm a little worried about what I'm hearing.

01:32:46:02 - 01:33:05:22

Patrice Beard

Are you thinking about killing yourself or hurting yourself? Ask the question. Never be afraid to ask the question and I always say that to the parents I speak with when I'm here, and certain things about what's what they're saying their child is going through and these things that their child is saying. And I'll say, have you asked them if they thought about killing themselves?

01:33:05:24 - 01:33:27:04

Patrice Beard

Well, no, I don't want that to happen. Or they'll start whispering to me. I'm like, well, why are you whispering? Like, you know, you don't want to be that parent. That's surprised, right? If you feel it, if your spidey senses are going off, or if you're seeing little pink flags and or hearing things that just ask, you must ask.

01:33:27:06 - 01:33:53:10

Erin Croyle

That was the most interesting thing. I interviewed someone, many years ago at this point, who works with suicide prevention in Veterans Affairs, and I was surprised that, you know, you you don't try to shy away from that question. You're better off making it an open topic of discussion. That is the healthiest way to handle it is to bring it out into the open.

01:33:53:10 - 01:34:15:03

Erin Croyle

Is there? I still don't I mean, I guess I understand why these are such difficult things to even speak of, because it's just so heartbreaking to to think that someone might think that that's the answer to ending the pain. Can you share anything about the research behind why it's so important to talk about it?

01:34:15:05 - 01:34:35:13

Patrice Beard

There is no increase of somebody, somebody trying to kill themselves just because they've talked about it. It's not something that you ask them and they're like, oh, I wasn't thinking about it. But now that you said it, I mean, it's just it's just not. They've done studies on people who have tried to kill themselves, and they've asked them, would it have helped if somebody had asked?

01:34:35:13 - 01:34:50:14

Patrice Beard

And the answer is yes. It doesn't harm you when somebody asks if you want to. And the answer was no, that's not it. I'm thinking about it or I'm not. Somebody is not putting that thought in my head. Are you familiar with a Kevin Hines?

01:34:50:16 - 01:34:52:00

Erin Croyle

No.

01:34:52:02 - 01:35:23:01

Patrice Beard

Okay. So he travels the world and talks about his suicide attempt. He jumped off the Golden Gate Bridge and survived. It's an amazing story. You may want to research it. He's got a short documentary ending now. Travels the world. He woke up in the morning knowing that he was going to go to the Golden Gate Bridge and jump off and kill himself, and he talks about how he runs into his father knew something was off, which was interesting to me.

01:35:23:01 - 01:35:43:00

Patrice Beard

His father knew something was off. So his father saw a pink flag and didn't address it. His father said, hey, why don't you come to work with me today? Because he knew something wasn't quite right. And he goes, no, I'm good. I'm not going to go to work with you. But he didn't say, are you okay? What's going on?

01:35:43:02 - 01:36:03:22

Patrice Beard

Where are you? Go. You know anything like that? He said on his travels to the Golden Gate Bridge that day. At any given time. And somebody stopped him and asked him if he was okay and if he was going to kill himself, he would have told them yes, he was full on ready. I mean, he was ready. He was going.

01:36:03:24 - 01:36:31:09

Patrice Beard

It's a very interesting story. He did jump and he said immediately when he jumped, he was like, oh, I don't want to do this. So now his mission is not only going around and sharing his story, he also has interviewed and talked with a lot of, suicide survivors. And they have all said immediately after they're like, no, this is not what I want to do.

01:36:31:11 - 01:36:34:24

Patrice Beard

So I think you're just feeling desperate in a situation.

01:36:35:01 - 01:36:43:05

Erin Croyle

I imagine, to be in that place, to know that someone cares enough might make you feel as.

01:36:43:07 - 01:37:12:10

Erin Croyle

It's worth living. It's such a tough subject. It's funny. I'm worried about saying the wrong thing in this interview and part of me is thinking I should edit this out, but not this all out. But my stuttering and rambling. But I think it just goes to show what a delicate subject it is and how I think talking about it and learning, and to talk about it openly without feeling as if it's taboo is important, especially with the rates on the rise.

01:37:12:10 - 01:37:16:21

Erin Croyle

So much just knowing that we can and should talk about it.

01:37:16:23 - 01:37:36:23

Patrice Beard

It's on a slight decline finally, but especially for children. So suicide is the second leading cause of death for teens and young adults ages ten through 34. And that's a study done from the CDC in 2023.

01:37:37:00 - 01:38:03:12

Erin Croyle

That's shocking and honestly heartbreaking. Patrice, if you're a parent who maybe your young child's mentioned it or you have suspicions aside from talking about it, I mean, is there things that you should do at home to look out for them, like hiding knives and razors? I mean, how should you handle that if you're worried about a young child, right?

01:38:03:14 - 01:38:06:11

Erin Croyle

Who might be having thoughts of suicide?

01:38:06:13 - 01:38:37:17

Patrice Beard

Right. It's it's really scary. The first thing is, if you think of your child, if you ask your child, do you want to kill yourself or your child says, I want to kill myself, I'm going to kill myself. Then I would say, well, what is your plan like? So sometimes, you know, we know our child, right? Sometimes a child will be very dramatic, will say, oh, I want to kill myself all blah, blah, blah, you know, and and that's an opportunity to have a very stern, serious conversation with your child.

01:38:37:17 - 01:38:56:21

Patrice Beard

Do you mean this because you have my full attention right now? Are you truly feeling this way? Because if so, I've got you. I will take care of you. We will get some help. I want you to not have to feel like this. So pay attention to it. They need to know that if they say this to you, you will take it very seriously.

01:38:56:21 - 01:39:15:06

Patrice Beard

That is not something you just said. If of course, number one, if you feel like your child or your child tried to kill themselves, your child is looking at you saying, I'm going to kill myself. If they have a therapist already or a psychiatrist already, you want to reach out to them and let them know what's going on and get further instruction.

01:39:15:12 - 01:39:32:19

Patrice Beard

If you don't have anything like that, then you want to take them to the pediatric e.R and drive them there and get evaluated, and let a pediatrician come in and speak to them and decide what's the best course of action to take.

01:39:32:21 - 01:39:54:16

Erin Croyle

Man, Patrice, we've gone from, you know, pink flags to suicide. And it feels heavy. So I really want to just make sure we touch on what some of the most positive developments you've seen around mental health are, and, but also places we need to grow. Can you tell us a little bit about that?

01:39:54:18 - 01:40:23:12

Patrice Beard

Well, that we talked about before stigma is better right. Especially in schools. Schools are talking about mental health now and acknowledging that mental health is a very serious thing. And it's just as important as our physical health, mental health. We've actually gone on to talk about mental health for our teachers. So when I do presentations now, it's not just about the children's mental health.

01:40:23:12 - 01:40:57:03

Patrice Beard

It's also about the teachers mental health. So we are coming to a better understanding that mental health affects everything. It affects grades, right? It affects relationships and affects test scores. It affects everything. And I think having that acknowledged now and how important that is, I think we've come a long way with that. I don't remember when I was a child teachers talking to me about mental health.

01:40:57:05 - 01:41:04:05

Patrice Beard

I mean, do you remember that at all? And now they have curriculums about it.

01:41:04:07 - 01:41:05:16

Erin Croyle

Oh, absolutely.

01:41:05:22 - 01:41:30:10

Patrice Beard

And that has come so far. It's come so far in a short amount of time. I'll say my child is 30, and I'll tell you when she was in elementary school and going through things and running out of the classroom and having panic attacks, my instruction was just to come get her and get her out of there because she was being disruptive.

01:41:30:12 - 01:42:02:11

Patrice Beard

I had an experience where my brother had passed away. My kids were in elementary school, and she was having a hard time in class. I was having a hard time getting up in the morning and getting my kids to school. So they were there were laid a lot, five, ten, 15 minutes late a lot. And for anybody that has kids in school, you know, at least in the county that I was, living, if you're tardy so many days that it counts as an absent.

01:42:02:13 - 01:42:21:05

Patrice Beard

So if you're tardy, like five days, then you get an absent. I remember I was called into the office that I dropped the kids off one day, and it was full knowledge that my brother had died recently and what was going on. So that should have been paying folks to the school, but to the teachers, to the school.

01:42:21:06 - 01:42:49:22

Patrice Beard

They all know what was happening. They all knew what took place. And instead of acknowledging or reaching out and saying, how can you support you? We know that you're going through a lot. We see that your kids are late. What can we do? And things like that. They decided to bring me in to the office with the teachers there and the social worker, break me and shame me and want an explanation of why my kids were late for school.

01:42:49:24 - 01:43:12:06

Patrice Beard

And so I completely went off and I left them all sitting there with their mouths open and basically saying, shame on you. Up and walking and getting up and taking them to school. You should be happy about that. You know what I mean? So from that to the way things are now, I don't think that would have ever happened to what happened now.

01:43:12:12 - 01:43:36:04

Patrice Beard

So I do think schools have come a long way. The latest statistic that I saw that that the suicide and self-harm arch is going down with kids. So the study I just told you about from the CDC was 2023. Takes a while to get statistics back from studies, but I'll probably do another study in like 26, 27 and, you know, see that is starting to go down a little bit.

01:43:36:09 - 01:43:54:10

Patrice Beard

So I think that's great. And I think just acknowledging it's great, I think by acknowledging it and having schools talk about it, kids feel more comfortable talking about it where we didn't talk about it when I was growing up or because it was a it was a stigma, was a shame, like mental health. What is that back up?

01:43:54:12 - 01:44:07:09

Patrice Beard

I mean, we knew about bullies and we had bullies in our schools and how it affected us and how it made us feel. And but now it's a different thing. So I think we've come a long way. I think we can come even further.

01:44:07:11 - 01:44:17:07

Erin Croyle

Yeah. And I mean, it also starts at higher ed where there's education about this for not just special ed teachers, not just social workers, but for all educators.

01:44:17:09 - 01:44:37:08

Patrice Beard

Right. And how many social workers do you have in one school? Right. I mean, sometimes you have social workers that have multiple schools, and half the time all they're doing is the IEP stuff or the 504 stuff. So they can't really focus. And then you've got the counselors doing that as well. And then for my daughter, she had a counselor assigned to her in high school.

01:44:37:14 - 01:44:57:12

Patrice Beard

And all that counselor did was paperwork. And if she was having a meltdown or feeling bullied or anything, she would say, oh, come on, sit in my classroom. But there was no interaction there. And I don't know, it's just I don't know. The answer is there's a lot going on there. I think obviously money is at the stem of it.

01:44:57:12 - 01:45:03:01

Patrice Beard

All right. So we could do anything we want if we had all the money in the world.

01:45:03:03 - 01:45:40:14

Erin Croyle

Yeah. When that I mean, that just kind of. And I don't want to end on something negative, but I do really want to, and maybe it's not so much a question, but just one last part of this conversation when we talk about taking those mental health days and taking those breaks that you need and self-care, it's something that I have explored in this podcast and in my writing and in my own life, where when you do attempt to take care of yourself, you have to put other things aside.

01:45:40:14 - 01:46:05:14

Erin Croyle

And so when you then reenter, taking a break or taking a vacation or recovering from surgery or taking care of a sick family member, then you have to catch up and it's like you're trying to get the help you need to be better, but you're coming back to four times the amount of work that just piles on. So how do we support one another in fixing this?

01:46:05:16 - 01:46:15:13

Erin Croyle

How do we spread the word about the way that we function as a society needs to change? I mean, how do we make this better?

01:46:15:15 - 01:46:32:01

Patrice Beard

Well, like I said before, we all have to. What works for me when it not work for you might not work for another person. So one person going away to the beach while I have the money to do that, and I have the time to do that, not everybody has that. That's why I said one size doesn't fit all.

01:46:32:03 - 01:46:56:09

Patrice Beard

So it could be your time is soaking in a tub for 30 minutes. It could be you're in your room doing something for an hour. I would say, be gentle with yourself and not make it so extreme. That's unattainable. You can get your self-care and you can feel your well. However your life circumstances allows you to do it.

01:46:56:09 - 01:47:13:11

Patrice Beard

Take that time and do it like I don't want to say one size fits all. I don't want to put any more guilt on a parent that probably already has so much guilt. Oh my gosh, now what am I doing? Self-care. Right now I don't have I don't have the money to do that. I'm a single parent. I can't do this.

01:47:13:11 - 01:47:31:11

Patrice Beard

I can't do that. So just do what works for you. If I can give any kind of advice at all, I would just be be gentle with yourself. Stop. Stop beating yourself down. You're doing the best you can. Do whatever you can with what you have. Maybe it's just talking to a friend on the phone. Just chill. You know what I mean?

01:47:31:11 - 01:47:58:18

Patrice Beard

Just take that time. Sometimes I'm talking to a parent on the phone, and the whole time we're talking about their child, their child, their child, their child, I will always make time to say, okay, now let's talk about you. What are you doing to take care of you? And a lot of times if they've been talking nonstop for an hour, that's the only time they'll be silent because they're stopping and thinking what happened.

01:47:58:20 - 01:48:31:20

Patrice Beard

Like I'm so focused on my child and understandably so that you've forgotten about yourself. So what are you doing to take care of you? There's always something you can do, whether it's sitting outside on your front steps or taking a quick walk or binge watching or I don't know what. There have been times my husband traveled a lot, and there were times where I've had to put up my boundaries and say, I don't have the energy for this right now.

01:48:31:22 - 01:48:51:17

Patrice Beard

Give me an hour. And I don't think there's anything wrong with that because I think your modeling behavior, your modeling, your behavior to your child, like I'm taking care of myself right now. I'm giving myself I'm important to love you, but I need an hour and then I'm going to connect that with you. And then I'll listen to what you want to talk about.

01:48:51:19 - 01:48:56:24

Patrice Beard

You know what I mean? So modeling that behavior is so important.

01:48:57:01 - 01:49:26:11

Erin Croyle

I do, and when you're saying this, I'm thinking because a lot of times I like I ask questions because I'm trying to think for myself. And, and families like myself and parents like myself, we allow ourselves to get to such a level of burnout where we feel like we need to just lay in bed for a day, and that day, then everything stacks up where, as opposed to that, I think we need to think about it like chipping away at a statue slowly.

01:49:26:14 - 01:49:57:19

Erin Croyle

What are the five little things I can do of self-care to just maintain, whether that be filling the water bottle and drinking it, making that doctor's appointment, going and answering emails on the deck instead of in a dark office. I think there are such, preconceived notions and honestly, the commercialization of self-care. But we really need to reframe what it is taking care of ourselves looks like.

01:49:57:21 - 01:50:22:05

Erin Croyle

So we're talking a little bit about how to care for ourselves. But the pink flags are also about people around us who might not have the privilege to listen to a podcast like this. To understand Patrice, I keep thinking about the person you mentioned to at at the checkout counter and, and I wonder what are the things that we can do throughout our day for those around us?

01:50:22:05 - 01:50:48:16

Erin Croyle

Like I tried to say, oh my gosh, I like your nails or something. When I'm somewhere for someone who doesn't have a job like yours and mine, where we can work from home. So for the people who might be having the worst day ever, but they've got to be public facing, what can we do to show kindness even if people aren't showing a pink flag but might be going through some stuff?

01:50:48:18 - 01:51:12:22

Patrice Beard

I think you just hit the nail on the button by showing kindness, just being observant and just being kind, just being nice sometimes just smiling to somebody just once. So how how was your day? How are you doing today? Like, that's all I did with that person that was working the cash register. I could tell something was maybe not, but she seemed a little, like very serious and abrupt.

01:51:12:24 - 01:51:30:02

Patrice Beard

Or she was kind of looking past me and not even know at me. And that's why I said, how's your day? How was your day? And she immediately is almost like you could see her shaking something off, you know, and she just kind of she was all, thank you for I'm like, okay, you know, just being kind to one another.

01:51:30:02 - 01:51:49:04

Patrice Beard

I know that sounds silly, just being kind to one another. We are all going through things. That's what helps me remember it, because have you ever been in a situation where you in the car or you're somewhere and you snap at somebody or you or you're like somebody cut you off and and you're like over the like, I know me, I'm a road ranger.

01:51:49:08 - 01:52:16:15

Patrice Beard

Like some funny type of like how I'm responding. I'm like, well, gosh darn, you know, like, that wasn't about me. That wasn't about that person. What? My goal. Like, I need to check myself. I'm. I'm stressed. I'm aggravated, I'm mad at somebody or whatever the situation and and how I react to others. I try to remember that. So when I'm on the receiving end of that, it helps me to remember that's not about me.

01:52:16:17 - 01:52:27:22

Patrice Beard

That's that's not about me. So I'm not going to react to that. I'm just going to try to take it like you. Good. That's what I tried to remember and that's how I try to behave.

01:52:27:24 - 01:52:57:11

Erin Croyle

Well, I love that you mentioned the car as well, because I think especially with how much time we all spend online and when we're our cars, we feel like when you're not face to face, whether it be comments on social media or in your car, there's a level of of animosity we give to one another where, man, it's really nice when someone just waves when they let you in on the highway or.

01:52:57:12 - 01:52:58:01

Patrice Beard

Yeah.

01:52:58:03 - 01:53:19:10

Erin Croyle

You just either don't comment on social media or give a heart on something, or just the kind of scenarios where no one even has to know who you are remembering. Like if you were talking that way to someone to their face, how would you actually say it? And probably the best example and and for people who are listening, they probably deal with this a lot.

01:53:19:11 - 01:53:42:20

Erin Croyle

You know, the amount of phone calls we have to make to insurance companies to handle medical bills or whatever, and those phone trees. And by the time you've hit the button and gotten cut off and you actually talk to a human, I literally have to check myself because I get to a level of frustration, and then I kind of vent at them and I'm like, I am so sorry, you're just the messenger.

01:53:43:01 - 01:53:52:12

Erin Croyle

I pull myself back and I'm like, oh my God, this is a human on the other line. So just remembering the human on the other side of whatever interaction we're at.

01:53:52:14 - 01:54:23:19

Patrice Beard

Going through, going through the same stuff to right, right. We're all going through stuff. This is hard times right now. We are all going through things. But I think if we all will just allow grace, respect, and just like, you know, keep your mouth shut. I have to say it, social media is horrible. I love like scrolling through different things, but it's amazing to me like I'll have to tell like family members don't be on it.

01:54:23:21 - 01:54:47:21

Patrice Beard

Like if it stresses you out, if it's causing you what I'm saying, cause you get out of it. That's the only thing. The only thing you can control is yourself. That's it. That's it. So thing you have control over is how you react to things. So if something is making you upset and causing you this kind of emotion, get off of it.

01:54:47:23 - 01:55:05:19

Patrice Beard

You know, I mean, I think I'm like the polar opposite. I keep my head in the sand. I don't know what I think that's going on, because to watch the news, to watch these things, it just sends me to where I can't sleep. It robs me of my peace. Oh well. Anything to rob me of my peace. I think that's why sometimes I get secluded in my house.

01:55:05:19 - 01:55:21:10

Patrice Beard

Because I'm like a peace here. Oh, look at my a little bubble, which is, like, not the best thing to do. But yeah. So anybody to rob me of my peace, if I can control that, if I know what's doing that to me, then I'm just not going to do that anymore. Yeah, I'm not going to be on social media.

01:55:21:10 - 01:55:42:06

Patrice Beard

I'm not going to watch the news. And at the same time, I don't want to talk about it either. And I have that right to do that. So if somebody is venting about something that causes me, then that's that boundary. We talked about. I don't want to talk about that. And I think if anyway, I'm just get off on a tangent, Erin.

01:55:42:06 - 01:56:04:14

Patrice Beard

But this social media is just killing me. My my daughter. I don't know why, but she posted her picture on this platform because she thought that it was a woman empowerment platform and that they would give her pointers, if you will, about her appearance. On what she could do to improve. And I'm thinking what in the world do you think?

01:56:04:16 - 01:56:21:19

Patrice Beard

She said within minutes she was in tears because these women were coming after her heart, just, oh they have souls like, you know like about her hair and the glasses like this and this or this. I'm like, why would we do that to one another? Why would we go out of our way like you were talking about social media.

01:56:21:19 - 01:56:31:15

Patrice Beard

Why would we go out of our way just to be nasty to one another when it was just as easily just said, go, girl, you rocket, you know, give full or just scroll through it, right? But I don't know.

01:56:31:18 - 01:57:04:20

Erin Croyle

We're just you know, I think sometimes people think being on their phones is self-care, but there are studies that show that all that time is actually really not great on our brains. And we're just it's the tip of the iceberg, what we're learning about how hard it is for us. And when I think about how addicting that scrolling can be as an adult who wasn't introduced into that until like their 30s and our kids being integrated into it now, yeah, that is some scary stuff.

01:57:04:20 - 01:57:24:18

Erin Croyle

And I think when we talk about mental health, we really need to learn boundaries and recognize that a fun show is one thing. But the rabbit hole that social media and even YouTube can take you on that can actually have some really negative impacts. And we have to really, really be careful for ourselves on there.

01:57:24:20 - 01:57:29:20

Patrice Beard

I can fall into that sometimes. I'll just like kind of like badge and especially with my ADHD.

01:57:29:22 - 01:57:30:13

Erin Croyle

Yeah.

01:57:30:15 - 01:57:52:23

Patrice Beard

Just that whole squash golf ball scroll, scroll. And then I just like how and then I'm thinking afterwards, how am I feeling now? Like, where am I right now? What where is my head right now? Am I am I smiling like when I watch Schitt's Creek or Ted Lasso? Am I smiling or do I feel, like I'm not anxious?

01:57:52:23 - 01:57:58:15

Patrice Beard

Right? Because being in tune with yourself and how you feel and when you're doing something. Yeah.

01:57:58:17 - 01:58:18:04

Erin Croyle

Well, Patrice, we're way over time, and I adore you. And I want to thank you. And I also want to say that after we're done here, I'm going to go in the mirror and very uncomfortably tell myself that I love myself five times. Five times. You better do the same. You said it's been a while.

01:58:18:06 - 01:58:18:17

Patrice Beard

Yeah.

01:58:18:17 - 01:58:24:19

Erin Croyle

And now feeling your own pink flags. And I'm seeing some. So why don't we both go do that and be very uncomfortable?

01:58:24:21 - 01:58:26:11

Patrice Beard

Yeah. Sounds like a plan.

01:58:26:13 - 01:58:27:22

Erin Croyle

Thank you so much, Patrice.

01:58:28:02 - 01:58:31:15

Patrice Beard

You're welcome. Thanks for having me. Always great talking to you, Erin.

01:58:31:17 - 01:58:39:03

Erin Croyle

Right back at you.

01:58:39:05 - 01:59:07:20

Erin Croyle

And thank you, listeners, for joining us. And please join Patrice and I in the I Love You practice. Go stand in front of a mirror and tell yourself with sincerity that you love yourself five times. Of course, you have to report back. I want to know how it made you feel. And while you're at it, be sure to share, review, subscribe, like, follow or whatever it is you need so you get a ping.

01:59:07:20 - 01:59:18:13

Erin Croyle

When our next episode drops. This is the Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves.

Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable!

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Carolyn Hax is the syndicated advice columnist with The Washington Post mentioned in this epsidoe.

SLIDES:

TRANSCRIPT:

01:00:06:24 - 01:00:34:24 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My seismic shift came when my first child was born with Down's Syndrome in 2010. I've been going virtually nonstop ever since I joined the center for Family Involvement at Lucas Partnership for people with disabilities.

01:00:34:24 - 01:01:03:14 Erin Croyle A few years after he was born. Utilizing my journalism and TV producer skills as a communications specialist, a topic that comes up time and time again in my work and my life is self-care. And for good reason. If you ask a parent who's also the primary caregiver in their family their thoughts on self-care, you'll probably get an eyeroll or a laugh or a stare down that feels like daggers shooting right through you.

01:01:03:16 - 01:01:30:08 Erin Croyle The reality is, for so many of us, the idea of self-care is a joke. So rather than me talking about how important it is and why you should prioritize it, I'm going to break down why self-care is practically impossible. Instead of the usual self-care gaslighting, it's time for some validation as to why we either can't seem to make it happen or suffer when we do.

01:01:30:10 - 01:01:41:09 Erin Croyle And maybe offer some practical, attainable ways to take care of you.

01:01:41:11 - 01:02:06:19 Erin Croyle Real talk as usual. I actually have an interview with our mental health specialist, Patrice Behar that's in the can that I can't wait to share with you. And I've got a few other interviews that I can't wait to line up and do, and, I mean, I say this over and over again because it's true. Things are just relentless in my life, and I know that I'm not alone in that.

01:02:06:21 - 01:02:34:23 Erin Croyle In the past month, I did a talk about self-care to, caregivers in Ohio, where I'm from. Shout out. Represent. Love that state. Even though it's the butt of so many jokes, especially with my, Gen Z Gen Alpha kiddos. Anyway, what kept resonating with me is I was like, struggling. Finding time to edit that interview with Patrice is to practice what I preach.

01:02:35:00 - 01:03:06:11 Erin Croyle So I recognize that I have been bombarded with life. And as parents and as humans, that's what happens. But what we don't really take into account is that as caregivers, that happens sometimes times a thousand, right? In this past month, my oldest kiddo, Arlo, who has multiple disabilities, including Down's syndrome, got really, really sick and when he gets sick, it's it's real, right?

01:03:06:12 - 01:03:34:08 Erin Croyle A cold can knock him out and put him in the hospital. And funny enough, while I was giving that, workshop on self-care was when he walked into my office and started coughing and literally interrupted and I heard the cough and I said, for example, I'm probably going to have to manage his stuff. And sure enough, the next day I was on the phone with pulmonology, and since then I've had to rearrange a sleep study, and he was out of school.

01:03:34:08 - 01:03:51:11 Erin Croyle And the steroids and other medicines he's on has has just kind of put him out of whack. And I've had to help with his anxiety getting him back to school. And the other two kiddos were really, really sick. But at different times. So then they were off school. And so of course I was sick. But that doesn't matter.

01:03:51:11 - 01:04:33:03 Erin Croyle You know, we power through as parents when we're sick. It doesn't matter. So I was coughing up a storm and managing and that's what we do. But when it came time again to edit this interview and I was like, how am I going to do it? Instead of staying up and pulling all nighters like, you know what? I'm going to give that the time it deserves, and I'm going to practice what I preach, and I'm just going to go ahead and try to riff through a podcast on my own and do this presentation one, to remind myself why things that seem to be doable are so impossible, and why deadlines that we set for ourselves.

01:04:33:05 - 01:05:05:12 Erin Croyle We have to give ourselves so much grace. And also why, even though I a lot for ample time to get all the things I need to get done, done. Rarely do I ever get anything done. And it's not for lack of trying and it's not for not constantly working. I don't rest, I don't practice self-care enough. But what I have preached and what I recognize is that my form of self-care this month was saying, you know what?

01:05:05:14 - 01:05:30:07 Erin Croyle My April podcast is going to come out in early May, and hopefully I will edit my Patrice interview for my May podcast and get it out in May. And let me talk about why, because that validation and the relation and understanding that we're not alone in this and pretending that everything's fine and it's not, it is hard and it seems like the hard never ends.

01:05:30:07 - 01:05:52:22 Erin Croyle And I don't know if that's middle age or parenting or caregiving or the world we live in, but hey. So without further ado, I'm going to go ahead and roll into my workshop on Self-care for caregivers, which I probably should have titled Self-care is a joke that We Need to Take Seriously. As I said in my intro, I'm Erin Croyle.

01:05:52:22 - 01:06:14:20 Erin Croyle I'm from Ohio. I am a journalist, a writer, a speaker, a podcaster. I'm a parent, I'm a caregiver, and I'm an advocate for disability rights and just human rights. In the show notes, I'll probably put the slide presentation in there, but you're listening to this, so I'm going to kind of present based on slides, just, just take a listen and sort of picture this, okay?

01:06:14:20 - 01:06:29:01 Erin Croyle And reflect on these words that I'll say very slowly. Be honest. What is your gut reaction to the term self-care?

01:06:29:03 - 01:06:58:01 Erin Croyle Now take a moment to really think about it. Because for me, I really do roll my eyes. We all know that it's important, but for many of us it feels or truly is unattainable. And in my opinion, the term itself is totally overused. And that's because the term self-care has been hijacked and commercialized by influencers, and the whole wellness industry.

01:06:58:03 - 01:07:26:23 Erin Croyle So take a minute to think what self-care truly is. According to the World Health Organization. Self-care is the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health worker. It has origins in the medical community. It has long been encouraged for professionals involved in trauma.

01:07:26:23 - 01:08:04:20 Erin Croyle So you think first responders, doctors, therapists, people really on the frontlines of the toughest stuff that we're dealing with. It has roots in the civil rights movement and the women's rights movement, and it is critical for people with disabilities and their caregivers. Poet, writer, mother, activist the late Audre Lorde said, overextending myself is not stretching myself. I had to accept how difficult it is to monitor the difference necessary for me as cutting down on sugar crucial.

01:08:04:22 - 01:08:33:01 Erin Croyle Physically, psychically caring for myself is not self-indulgence, it is self-preservation. For those of us living as both parents and caregivers, the old adage that life is a marathon and not a sprint doesn't apply. Our lives are both a marathon and a sprint with no built in water breaks. That's why we really have to look to taking those breaks.

01:08:33:03 - 01:09:02:01 Erin Croyle They say that comparison is the thief of joy. But for us, comparing our lives to parents of neurotypical, non-disabled kids is a form of truth that can set you free. Like it or not, our lives are vastly different. My brother has two children who are similar ages to my three children. His boys are 15 and 12. Throughout our entire existence as parents, it's been really eye opening.

01:09:02:03 - 01:09:25:15 Erin Croyle Like I have always kind of looked in compared. And in the early years it was kind of hard because it hurt, because I was still accepting and grieving that Arlo's life would never be the life that you envision as a parent. When you have a kid, because most parents don't envision becoming parents to a child with a disability that will need lifelong support.

01:09:25:17 - 01:09:45:11 Erin Croyle You just don't. It's not in it's not in most movies. It's not in the fairy tales. It's just not. It's not what you imagine. And so those early years, I was able to look and just kind of see those developmental differences. That kind of stung. I was able to observe how much work it took just to help my son walk, as opposed to his kids just doing it.

01:09:45:13 - 01:10:17:20 Erin Croyle And sometimes, I don't know, I felt a certain kind of way. Never jealous, but just melancholy sometimes. And then I had another kiddo who was a similar age to his second kiddo. And Amelia's is now 12. And so I saw like, oh, I recognize that if you have a neurotypical typically develop meaning, right? I use quotes with those because those terms aren't great, but what other way are you going to say it?

01:10:17:22 - 01:10:41:00 Erin Croyle Do you have a non-disabled kiddo? Those milestones come naturally. There's no early intervention. There's no physical therapist showing you how to help your child move a certain way. There's no speech therapist helping with feeding and building muscle strength. Your kids just do it. And I still remember a meal starting to walk at nine months. And I was just like, wow, that just happens.

01:10:41:02 - 01:11:03:19 Erin Croyle So it got easier. But then there's little moments all throughout where I see the differences. And so now, my brother's oldest is starting to drive, and that's something I don't think I will ever do. Even when we do go cart riding, Arlo likes to, have me drive and we get a little tandem seat. And I'm so lucky that we have that nearby where we live, because it's really cool.

01:11:03:19 - 01:11:32:02 Erin Croyle And the person that runs the place is amazing. I highly recommend finding amazing people who understand how huge little things like that are, but there's things that we just take on naturally as caregivers that are normal, that my brother or, you know, people who have non-disabled, neurotypical kids just cannot fathom. So the little things like, okay, they have the anxiety of teaching their oldest to drive.

01:11:32:04 - 01:11:54:22 Erin Croyle But then when he's able to drive, he's alleviating some of the stress from my brother and and his wife where my nephew's going to drive, places, he'll be able to pick up his his younger brother, my other nephew, and their lives will get easier. And just just seeing them when we hang out together, the things that his kids are able to do independently, that don't come naturally to mine.

01:11:54:22 - 01:12:28:15 Erin Croyle Because, you know, not only does Arlo have significant support needs, but there's no divergence throughout my family. And so things that really I'm still trying to understand that come along with ADHD and neurodiversity and the whole spectrum of that. Certain rules work for them. And so it's a really, really different experience. That's where I think, considering an average day of a quote unquote typical parent compared to the average day of a primary caregiver is really important.

01:12:28:17 - 01:12:53:22 Erin Croyle Think about the day of a typical parent, and you got to consider the differences of ages. You know, toddlers are very different than grade schoolers. And teenagers are going to need nudged out of bed no matter what. But you know, the typical day average, right? Wake up breakfast, head out to work or school or daycare, extracurriculars, dinner. Chill out.

01:12:53:22 - 01:13:19:02 Erin Croyle You know, maybe go to bed. So the add ons for families without that extra stuff might be an annual well visit, the dentist appointment, occasional sick visits, things like that. Right? Consider an average day of a parent who's also a primary caregiver. You know you're waking up, but you've probably also been woken up throughout the night. You have to help dress and feed your children.

01:13:19:05 - 01:13:43:10 Erin Croyle You're going to have to help with hygiene and brushing teeth. Sometimes there's toileting. You're helping with medications, and then there's work, school, daycare. Maybe there's early intervention or therapies that you're either taking them to or bringing people in the house. There's extracurriculars, but a lot of times that takes extra effort and extra paperwork and extra kind of collaboration with whoever the coach or teacher, whomever is.

01:13:43:12 - 01:14:15:13 Erin Croyle Then you've got dinner and feeding the children more hygiene assistance, medications, maybe nursing level of care, bedtime routine, and then you've got other add ons there. You've got appointments with specialists and IEP meetings and paperwork and Medicaid meetings and homework assistance and behavioral support and dietary needs. Emotional regulation, nursing level care. In some cases, the interruptions we face on a daily basis are real.

01:14:15:15 - 01:14:38:08 Erin Croyle We're so used to them, but they don't happen for a lot of other parents. We don't have the same amount of hours in our day yet. We try to function and in many cases are expected to function and keep up as if we do. And let's not forget the financial hit that so many of us take as caregivers.

01:14:38:10 - 01:14:58:21 Erin Croyle Sometimes we can't work because even if our kiddos in school, it's still kind of a full time job. I mean, I think about how many calls I get about my children needing assistance at school. I've got to be ready to be interrupted multiple times a day. It doesn't happen every day, but there are flare ups throughout the school year where it might.

01:14:58:23 - 01:15:27:14 Erin Croyle So having a flexible job or taking on part time or flexible work, a lot of times our earning potential takes a hit and that puts us on a lower earning trajectory for life. Even those of us who do work, and work full time. We're either doubling up when we get home, burning the midnight oil for house stuff and other stuff, or we're spending a whole lot of money on the other things, like cleaning services and lawn care and whatnot.

01:15:27:16 - 01:16:01:24 Erin Croyle Or take away because we don't have time to cook dinner. It all adds up and it all creates these really different life experiences. Others don't realize how different our lives are. One of the biggest obstacles to self-care for caregivers are the expectations put upon us by those around us, or just ourselves. Take an inventory of your life and recognize what is doable and what's truly unrealistic.

01:16:02:01 - 01:16:32:24 Erin Croyle A really good analogy. An equation I like to think of frequently. And I want to thank the Washington Post advice columnist Carolyn Hax. I think it might have been a reader I saw this years ago in one of her columns, when I had time to read it. Happiness equals reality minus expectations. Stop expecting so much of yourself and just live in the reality you're in and recognize it.

01:16:33:01 - 01:16:58:11 Erin Croyle Another thing that really has helped me, because I am so hard on myself, is really looking at why I can't get it done. What I like to use is, if you've seen the movie or read the book, and with my own neurodivergent, it's it's hard to read a book. So I'm going to net. I've only seen the movie about a boy with Hugh Grant, which, by the way, Hugh Grant told A resurgence in my House, heretic was such a good film.

01:16:58:11 - 01:17:30:24 Erin Croyle Me and my 12 year old loved it. So seeing the evolution of Hugh Grant as an actor is has really been kind of fun. And so that's just a fun side tangent, but the movie about a boy came out, I don't, I think in maybe in the early aughts. Right. The 2000 maybe. I'm not sure. And in the film version, Hugh Grant is a wealthy bachelor living off the royalties of his dad's famous song, and he waxes on in this pretty funny sequence about how he breaks his daunting day into units and his units.

01:17:30:24 - 01:17:59:20 Erin Croyle Each unit is 30 minutes in it, he said. Taking a bath, one unit watching a TV show, one unit web based research, two units exercising, three units carefully disheveled hair at a salon, four units. And that really resonates with me because I sometimes think about when my son will refuse to go into school or refuse to get out of the car.

01:17:59:22 - 01:18:20:13 Erin Croyle It doesn't seem like it takes a lot out of my day, but sometimes that's an entire unit, or between the amount of time it takes for me to reregulate myself. It's it's 30 minutes one unit or the other day, my my daughter Maya, who's ten, forgot their, trombone, even though we have calendar reminders and I forgot it to.

01:18:20:15 - 01:18:39:12 Erin Croyle And so I walked them to school and came home and was like, oops. I got to get that right back there. Well, there goes a unit, right? Another unit. Just by getting in the car, getting the trombone, taking the school, dropping it off, saying hi, explaining what happened. Getting back in the car, getting home and re re setting myself.

01:18:39:14 - 01:19:02:22 Erin Croyle There's a whole unit gone just because someone forgot a trombone. And maybe it doesn't seem like a lot like, no big deal. It happens all the time. You got to let it go. But when we break our day into units and think about it in that way, it really sheds light on why we can't get it done. And so this will be in the show notes.

01:19:02:22 - 01:19:30:15 Erin Croyle But to just try to visualize if a unit is 30 minutes and a day is 24 hours, that's 48 units. Let's go ahead and break this down okay. Let's be generous and say that you get seven hours of sleep or attempting to sleep, like attempting to sleep. I know that we all burn the midnight oil or have kiddos that might need care throughout the night, but let's just say seven hours, which is not enough, by the way.

01:19:30:18 - 01:20:00:23 Erin Croyle Let's be real. But it's it's realistic. That's 14 units. That leaves us with 34 units. Okay. If we are going to look at personal hygiene for just ourselves in toileting, say that's one unit throughout the day. If we have enough time to actually take a shower and get dressed and maybe like, comb our hair a little bit, let's say that's another unit, meal prep, let's go a little bit skimpy there and figure 30 minutes per meal, not including snacks.

01:20:00:23 - 01:20:21:22 Erin Croyle But if you kind of tack that in, that's three units total of meal prep, right. If we're lucky enough to sit down and eat three meals in a day, hopefully that's a, you know, another three units, maybe meal cleanup if you're cooking and getting stuff ready, that is two units easily. I my gosh, it never ends right. Basic chores.

01:20:22:03 - 01:20:49:02 Erin Croyle That is average of two units a day. I would say that's 30 minute units, chores, two units an hour a day, and again, think about the average laundry, cleaning up, picking up, yard work, just basics. It adds up basic correspondence. So texting, emails, phone calls. That's about an hour a day for most of us. And that's just for typical folks.

01:20:49:04 - 01:21:15:16 Erin Croyle Now when you tack on parenting and caregiving duties, you're helping with your child's hygiene, which can range from total care to more general support. Here's the thing, though even with quote unquote typical children, this takes reminders and prodding well into their teen years. If you, disability and or neurodiversity into the mix, you might be trying visual schedules or augmentative communication or whatever.

01:21:15:18 - 01:21:42:15 Erin Croyle So hygiene support, that's easily two units toileting. Let's say that's one unit. And we all know that can be so different depending on family and age of the children and all of that, which is why I have four units for behavioral supports. This is a generic category for caregivers that encompasses so much four units is the equivalent of two hours a day, and that's the average.

01:21:42:17 - 01:22:06:15 Erin Croyle Think about things that might be tougher in your family that others would probably be clueless about. In my household, transitions are really tough for my oldest, most days, even getting him to go to activities he enjoys requires a gentle full court press filled with humor and patience. Any time I think about leaving the house with him, I build an ample extra time.

01:22:06:21 - 01:22:30:23 Erin Croyle We're talking about 30 minutes at least, not counting loading the car and taking care of all of the things those 30 minutes just to ease him into it, to get him out the door, and includes building things like a support circle full of folks who really get it, like finding a stylist who's kind and understanding and willing to adjust their schedule if Arlo just isn't having it.

01:22:31:00 - 01:22:58:15 Erin Croyle This stuff is hard, y'all. It is. Pull your hair out. Frustrating when your kiddos refuse to do things. Surrounding yourself with people who can laugh and cry with you through it, who either get it because they're in it to in their own way, or just truly know how to practice empathy. It makes all of this more doable, but it also takes time to build that which is part of the four units of behavioral support.

01:22:58:17 - 01:23:24:15 Erin Croyle Now, with my youngest assistance with homework or really any on preferred activity takes a huge effort. The challenges that come with neurodiversity are for real, and they come with their own set of unique skills that you need to develop. And in many ways, it's harder for folks to see it and realize it. Because kiddos who are neurodiverse, they present as typical, but they don't.

01:23:24:19 - 01:23:46:17 Erin Croyle They don't function that way. They need a lot of understanding and patience and time and kindness and firmness. And honestly, it's a mix I just truly don't fully get yet. And I'm working on it and it's hard now. Another example is my middle guy, who's 12, and I'm lucky enough that he still enjoys hanging out with me for the most part.

01:23:46:19 - 01:24:18:11 Erin Croyle And we love shooting the breeze about Minecraft or baseball, or just watching movies together, making sure that each of my children get the attention and affection they need in their own specific way. As much as I love doing it, it's work. It's the greatest job I've ever had, don't get me wrong. But when children have complex needs, which can range from disabilities that require anything from, again, total care to high support needs to neurodiversity, to anxiety or mental health challenges.

01:24:18:13 - 01:24:57:07 Erin Croyle It requires parents to tap into skills that many of us are not equipped with, nor do we have a community that can show us. And that's why talking about this stuff is so important. We need to be honest and real about the challenges we face. When you're supporting a child or children who are living in a world that's not designed for them, or they're functioning in spaces that are filled with people unwilling to consider or accommodate their needs, it can be a lot, and it takes a lot of time to break down those barriers and give these kids what they need.

01:24:57:09 - 01:25:26:17 Erin Croyle And when we're spending that time with our children in meaningful ways, trying to fulfill their developmental and emotional needs, other things go on the backburner, like self-care, even little things like bringing a forgotten instrument to school that can end up taking an entire extra unit when all is said and done. And for me, and I'm sure others, those small but frequent interruptions wreak havoc on my day.

01:25:26:19 - 01:26:08:11 Erin Croyle And that's partly due to my own neurodiversity. If I get sidetracked, it's really hard to get back on task and I get sidetracked all the time. So yeah, behavioral supports it is a lot. Caregiver correspondence is another thing that averages for units. Think IEP meetings and the preparation that comes with it. That includes 5 or 4 meetings, doctors, specialists, messaging on my chart, chasing down lab reports, filling out the piles of paperwork required for everything from waiver services or just participating.

01:26:08:13 - 01:26:40:09 Erin Croyle It's all that regular stuff, plus so much more, because the world's just not accustomed to helping people who have additional needs. It's the caregiver stuff. I don't know about you, but I can easily spend a full workday each week managing medical bills, insurance, paperwork, emailing people from school care team, whatever, etc. etc. etc. and then I can do it again the next week and the next week.

01:26:40:11 - 01:27:12:17 Erin Croyle It is so much. There's no time for us to even line up the support we need to free up time. The decks are stacked against us here. It's like treading water to keep from drowning, and the metaphorical life preservers thrown at us are impossible to reach because we're too busy getting through everything else. Those life preservers are just a few inches away, and just when we think we can reach it and and line up the support we need, we have to swim in the opposite direction to handle something else.

01:27:12:19 - 01:27:46:20 Erin Croyle It is relentless, and we need to understand that and honor that and recognize that. Because it's not going away. Medical needs moving on. I put one unit, but for many of us, we all know it's way more than that. And finally, two units for transportation, extracurriculars and those, you know, basic transitions. This is that soccer mom territory that easily averages an hour a day.

01:27:46:22 - 01:28:00:15 Erin Croyle Now, if you total all of these units up, it's 42 units. That's 42 units out of 48.

01:28:00:17 - 01:28:38:08 Erin Croyle That means we have six units left in a 24 hour cycle. That's three hours out of 24. That's free. That's all. And this only accounts for family and caregiver duties. This isn't really taking into account our jobs or all the other things that we're managing. And so if we're trying to be the caregiver that our children need, we only have three hours left most days.

01:28:38:10 - 01:29:04:14 Erin Croyle That's the reason we can never get it done. It's impossible. It is literally impossible to get it all done. So what are we supposed to do? Legit? Let's scoff at the idea of self-care, because we can barely get through the day. And folks, instead of seeing this, they just say, take time for ourselves. You need to take time for ourselves.

01:29:04:20 - 01:29:36:15 Erin Croyle How are we supposed to take time for ourselves when there is no time? And this is what I'm learning. My son is going to be 15 this year, so it's taken a while and I'm still learning how to practice what I preach. First off, say no. We need to start saying no. We cannot do the impossible. So let's stop pretending that we can keep up and do all of the things that our parenting peers who also aren't caregivers can do.

01:29:36:17 - 01:30:05:17 Erin Croyle Skip the PTA meeting. Don't sell the Girl Scout cookies. Don't coach the team. Say no. If it's Teacher Appreciation Week. You know what? Shoot off an email saying how important these teachers are and call it a day. Let the teachers know how much you appreciate them in your own way. That honors yourself. And that's the next thing. Honor yourself, okay?

01:30:05:19 - 01:30:32:06 Erin Croyle Acknowledge the hardships. We don't have to explain ourselves, but once in a while I think that we should. If other people have no idea what it's like to live as an unpaid caregiver to a child with high support needs, how will they ever know that we're drowning? It's a really weird place because I hate doing this and I don't want to complain about my life.

01:30:32:08 - 01:31:04:14 Erin Croyle But if we don't make it clear that we need more help and empathy and understand, other people won't know if we pretend everything is hunky dory, everyone's going to think everything's hunky dory. Think of ways that let people in while honoring and respecting your child's autonomy. So the way I like to do this is I will frequently remind folks that my child is not, and never has been a burden and never will be a burden.

01:31:04:16 - 01:31:29:11 Erin Croyle The burden are the societal constructs that make it so hard to be in spaces when you have a disability, because of the lack of accessibility and understanding. And so in part of this whole practice, what I preach thing, I have started even trying to do this more. I have always stressed that disability isn't a bad thing. It's a natural part of the human condition.

01:31:29:13 - 01:31:50:17 Erin Croyle I talk about disability openly whenever is necessary, but lately I've been realizing that maybe I need to take it to the next level. Because if I miss a meeting, maybe folks need to know it's not just because I'm mom, right? Especially as women. People are like, oh, she's a mom. So, you know, I get that it's hard being a mom.

01:31:50:19 - 01:32:21:02 Erin Croyle No, it is hard being an unpaid caregiver in a world that doesn't really give, you know, what about people with disabilities? Let's be honest. It's true. And like I said, it, accessing the services that are available is a full time job in and of itself. Even though no one needs to know why I'm going to miss a meeting if it's something outside of the realm of my job.

01:32:21:04 - 01:32:52:06 Erin Croyle So for a good example, and I don't like to talk about this often, but I serve on my local school board and it's an honor. And I love the work. But my son has been through some stuff, and there's been some really heavy medical components to his disability that have that have been devastating. And that, force me to face his mortality and I've had to deal with some heavy stuff.

01:32:52:08 - 01:33:16:12 Erin Croyle And I think a lot of us do have to deal with heavy stuff personally. And because we know that it's no one's business, we don't say anything. But explaining that. Medically complex and medically fragile people. When you care for them.

01:33:16:14 - 01:33:49:03 Erin Croyle It's hard to think of how to explain to someone what it's like to walk through this world thinking that you're going to lose your child in a few months or a few years. And I think that people can relate to that idea. And if you don't tell them that, that's something that is a tightrope that you walk from time to time as you figure out what the next medical anomaly is.

01:33:49:05 - 01:34:04:24 Erin Croyle You're walking around and your soul is being crushed simultaneously, and you're expected to function in a way that is normal and you can't.

01:34:05:01 - 01:34:31:19 Erin Croyle It's tough because you don't want to have to talk about it because of how painful it is, and because you're putting yourself out there and you're incredibly vulnerable. And in some spaces, you're carrying this weight of the world on your shoulders while also having to maintain composure, trying to figure out ways to share that, I think is important.

01:34:31:21 - 01:35:08:10 Erin Croyle Being a little more real about how challenging certain aspects of our life are, while maintaining that fine line of. Privacy. It's really hard. And it's also something that is very necessary. And I'm still dealing with how to figure that out and respect my son, but also let people know that they need to respect the fact that if I'm not fully present, it's for a darn good reason.

01:35:08:10 - 01:35:31:03 Erin Croyle Right? And I think that I think that a lot of times people see a caregiver and they just equate it to a stay at home mom or a stay at home dad or whoever, and they don't realize that we are dealing with some stuff, that it's truly unimaginable what we're carrying with us every day. And it's it's our normal.

01:35:31:05 - 01:36:04:04 Erin Croyle We live in this completely different level of anxiety that other people, I don't think can fathom. And I think we need to start figuring out how to share that, because then maybe people will have a little more space and understanding and be allies in our advocacy. Guy that just got really heavy. I, I'm going to transition here and also say that we need to also honor our self by not listening to other people.

01:36:04:06 - 01:36:36:07 Erin Croyle This means you have to recognize what self-care is for you. A good example that I have really figured out through therapy and, and, and understanding my neurodiversity, is that folks like to say to me to let it go, oh, don't worry, it's just a messy house. Or let this go. That is not possible for me. It causes actual pain for me to live in chaos, and some order is necessary for my children because of their neurodiversity.

01:36:36:12 - 01:37:06:11 Erin Croyle So self-care for me is making sure my house is clean. It is putting away my kids laundry for them because they need some order in their own rooms. It's figuring out what works for you and what works for your family unit. So think about your needs to feel physically and mentally stable even. And I think it's important to recognize what true self-care is.

01:37:06:13 - 01:37:41:20 Erin Croyle Like I mentioned earlier, it is not going to get a manicure or going get a massage. In its purest form. It's taking care of yourself. We're so busy taking care of our loved ones that will miss a mammogram or skip a well visit, but those things are essential. That stuff is self-care. So is taking a shower. So is eating something, or drinking enough water, or getting exercise, or talking to a friend.

01:37:41:22 - 01:38:10:05 Erin Croyle Those pure forms of self-care are essential. Another thing we need to do for ourselves is to just take 5 or 10 when our days are jam packed, you got to think about ways that you can fit self-care into it naturally. So I find myself doing squats while I'm in a waiting room. Or if I'm waiting at pick up, I do push ups on a bench on a playground.

01:38:10:07 - 01:38:36:20 Erin Croyle I keep nail clippers and floss in my car, along with hand sanitizer and hand wipes. Because, yo, sometimes just flossing isn't possible, but it's necessary. Just walk around the block. If you can answer an email on your phone while you're in a waiting room or wherever you can fit it in, pay your bills online. If you're in a meeting where you don't need to pay 100% attention, just get those little things done.

01:38:36:22 - 01:39:06:05 Erin Croyle Take 5 or 10 minutes to just do them. I wear workout clothes almost everywhere I go. I wear tennis shoes everywhere I go. I have to do that partially because of my son's allotment of shoes. It became a habit. But then I realized that my comfort is more important. You have to do. You make your life functional in a way that you can figure out how to fit self-care in, instead of doing everything for others.

01:39:06:07 - 01:39:29:17 Erin Croyle Yes, we don't have enough hours in the day, but what little tweaks can you make where you can pick a few minutes to do things you need? Because our physical fitness, it's not about what we look like. We know we have to take care of our loved ones. We don't get to become frail. We have to maintain our strength because we have to care for someone, and we likely will into our old age.

01:39:29:19 - 01:39:53:20 Erin Croyle What can we do so we can live long enough to support our kiddos and feel good in our bodies doing so. It's also about embracing moments of joy. This stuff is hard. Joy and happiness. It's not a constant for anybody. Those fleeting moments of joy, man, just grab on to them. When my kiddos hug me, I soak it in.

01:39:53:22 - 01:40:11:01 Erin Croyle I can't tell you how many meetings I'm late for because my kiddos want one more hug, and there's no way I'm going to say no to that. They're 14, 12, and ten. Those aren't going to have a much longer if they ask for a hug. I'm going to be five minutes late. I'm going to go get that hug.

01:40:11:03 - 01:40:37:09 Erin Croyle If they're dancing, I dance with them sometimes, man, I got to put earplugs in and dance with them because it gets loud in my house. But the joy and smiles on their faces are everything and it lifts me up. If a friend wants to go on a walk and maybe gossip or whatever, I do whatever I can to push off other stuff because I don't get much adult interaction.

01:40:37:11 - 01:41:07:00 Erin Croyle I could use some catty banter or hear about whatever TV show other people are able to watch that maybe I can start watching. We need it. We need to think about other things other than these daily struggles we're living in and indulging in brain candy. I know friends that watch Real Housewives and, as much of a news junkie as I am, I turn off the news and I find watching shows like Ted Lasso to be its own form of therapy.

01:41:07:02 - 01:41:33:18 Erin Croyle Lately, we've been watching Parks and Rec, and it's just really joyful and sometimes funny and silly, but also almost always uplifting and and hopeful. And I need that because the rest of the world doesn't feel that way. I know I said that it was important to recognize what true self-care is, but also buy the darn latte. Just get the mammogram first, right?

01:41:33:20 - 01:42:01:03 Erin Croyle If you can swing it, get a massage, get a manicure, get a pedicure. Even better, hire a cleaning service. Do whatever you can to make your life easier. Most importantly, we have to give ourselves grace. We only get one chance at this life of ours, right? If you miss a deadline or have to cancel a meeting, let it go.

01:42:01:05 - 01:42:26:11 Erin Croyle I remember early in my career I was so focused on getting ahead and climbing the ladder. I struggle with whether I should take time off. I almost missed my brother's wedding because I didn't want to miss the launch of the National Geographic Channel. My dad would always say, when you look back on life, what do you think would matter more that you had perfect attendance, or that you got to spend a weekend with your family?

01:42:26:13 - 01:42:45:19 Erin Croyle And he's right. My dad was the guy who, when I was, I was such an overachiever my whole life. Right. So in high school, I didn't want to do senior skip day. And he was like, Erin, come on. And he took me and a friend to some Amish restaurant because I grew up in Northeast Ohio and it was still is Amish country, right?

01:42:45:19 - 01:43:07:07 Erin Croyle So I was Mary Yoder's or something, literally. That was the name of the place. And I still remember that and look on that so fondly, because not only did I get a chance to go to breakfast with my dad, I got taught one of the most important life lessons. I remember spending that time with my dad and he's not here anymore.

01:43:07:09 - 01:43:36:09 Erin Croyle I don't regret missing school. Have you have you ever regretted missing a meeting right now? I might regret missing a, meeting that I had a month ago. But when we shift and look at stuff through a five year lens or even a one year lens, it's typically not meetings or work events that we regret missing. It's that band concert that my son had that I missed.

01:43:36:11 - 01:44:07:13 Erin Croyle It's spending time with people that I love that aren't here anymore, when our days are nonstop and our lives are nonstop, and those moments of making a decision of what needs to come first and what we need to prioritize, try to take a step back and use that lens of what your future self would want to see you do, and use that to guide you.

01:44:07:15 - 01:44:39:03 Erin Croyle Cokie Roberts, journalist who I interned under actually back way back in the day. Right. I was at this week with Sam Donaldson and Cokie Roberts. She said to remember that your parents are only old ones, and your children are only young once. Think about all the little things that matter. Give yourself grace. And breathe.

01:44:39:05 - 01:44:58:17 Erin Croyle Thanks for listening. Be sure to share, review, subscribe, like, follow or whatever it is you need. So you get a ping when the next episode drops. This is the Odyssey Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Parenting Special Needs Magazine

Simplified self-care

There is limited research on the connection between caregiving and problem drinking.

There is some recognition that caregiver burden can cause anxiety, depression, social isolation, and stress which are predictors of increased alcohol use.

The slope to addiction is a slippery one. "It's 5 o'clock somewhere" loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on the slide.

I speak from experience. I remember the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I chased over and over again at countless venues - dorms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually play dates.

Information on how ADHD impacts substance use.

2023 survey of 1600 mothers by Parents found that 48% had tried to curb their drinking, one in three admitted they might be drinking too much, and 12% were worried they might have a dependency problem.

Most folks pour way more than a standard serving when imbibing.

In early 2025, the current U.S. Surgeon General Dr. Vivek Murthy urged warning labels be updated to include a heightened risk of at least seven different types of cancers including breast, throat, and colon.

According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.

WHY ALCOHOL IS SO RISKY FOR CAREGIVERS

For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need - respite, support, empathy, space, to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality.

The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgement, and a whole host of other things that can make caregiving more difficult. If you are unable to recognize that alcohol use is exacerbating what ails you; a cycle is established - drinking to ease what ails you, in turn causing more ailment which leads to more drinking which can lead to problem drinking and eventually, potentially dependence.

There are many self-assessment tools available online, you just need to be brutally honest with yourself when taking them.

As difficult as cutting back can be, finding help is easier than ever.

TRANSCRIPT:

01:00:06:21 - 01:00:38:09

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's, Partnership for People with Disabilities.

01:00:38:11 - 01:01:19:00

Erin Croyle

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating the tough stuff. I'm all about keeping it real, so I'm just going to come out and say. I've been recovering from surgery. So while I have some amazing interviews coming your way, this episode, I'm going to share a somewhat personal article I wrote for Parenting Special Needs Magazine about one of the hardest yet best things I've ever done for myself.

01:01:19:02 - 01:01:53:10

Erin Croyle

The allure of sipping on an adult beverage at the end of a hard day is real and for good reason. A glass of wine or a stiff drink are long romanticized ways to chill and unwind. A sort of easy pass into the fast lane of relaxation. But what happens when nearly every day is hard? Kind of like the unending mental and physical labor that comes with being both a parent and a primary caregiver for your child.

01:01:53:12 - 01:02:27:08

Erin Croyle

Reaching for a bottle of booze may seem like simplified self-care when your days are often both incredibly demanding. Yet super mundane. While there's virtually no research on the connection between caregiving and problem drinking, there is recognition that caregiver burden can cause anxiety, depression, social isolation and stress, which are all predictors of increased alcohol use. The slope to addiction is a slippery one.

01:02:27:10 - 01:03:14:02

Erin Croyle

It's 5 o'clock somewhere, loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on that slide. I speak from experience. I remember so well the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I've chased over and over again at countless venues, dorm rooms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually playdates.

01:03:14:04 - 01:03:42:10

Erin Croyle

The way our culture normalizes alcohol use made it easy for me to enjoy a glass of wine or three while making dinner for my children. That is up until I quietly quit drinking when they were ages five, three and one. Mommy, happy hours at a playground are a thing. One that I partook in, enjoyed and instigated. I felt like I deserved it.

01:03:42:12 - 01:04:12:13

Erin Croyle

My oldest son has Down syndrome and has eloped since he could walk. I now know that all three of my children have ADHD and so do I. What felt like the only attainable self-care I could find at the time was actually me self-medicating with some really heavy dosing. Caregivers operate at a whole other level of intensity than peers who are simply just parents.

01:04:12:15 - 01:04:42:13

Erin Croyle

When there is literally no time in the day to just be taking the edge off with a drink can be dangerously appealing. In fact, a 2023 survey of 1600 mothers by Parents magazine found that 48% had tried to curb their drinking. One in three admitted they might be drinking too much and 12% were worried they might have a dependency problem.

01:04:42:15 - 01:05:19:07

Erin Croyle

Everything in moderation is not always the way sober curious movements abound these days, from theme months like dry January and sober October to expensive mocktails popping up in beverage sections at the grocery store. It's easier than ever to be a teetotaler. Staying sober, however, is a whole other story. Drinking is ingrained in our lifestyles. Mimosas at brunch, celebratory toasts at wherever.

01:05:19:09 - 01:05:49:13

Erin Croyle

Honorary toasts at wherever. When I first stopped drinking, the pressure to have just one came from virtually every adult around me. Nearly a decade later, and I still rehearsed responses as to why I'm abstaining. It's just assumed that everyone old enough to drink would drink. And if they're not drinking, they're expected to explain why. As if it's anyone's business.

01:05:49:15 - 01:06:19:11

Erin Croyle

The thing is, if moderation requires thought or effort, it might be time to examine your habits more closely. This idea that a glass of red wine with dinner every night is healthy is a complete fallacy on many fronts. First off, how much is in that drink of yours? A serving size of wine is five ounces. That is way smaller than most people's pores.

01:06:19:13 - 01:07:02:12

Erin Croyle

The same goes for most drinks, from beer to hard booze to malt liquor. And I'll have graphs and more info on that in the show notes. Another consideration is that many people who drink too much don't realize they're drinking in excess, and they certainly don't see themselves as dependent on alcohol. Furthermore, statistics on alcohol consumption are self-reported. If we were to factor in human error and perception, most people are probably both over serving themselves while simultaneously underreporting their consumption to medical professionals.

01:07:02:14 - 01:07:38:02

Erin Croyle

In fact, the CDC reports that nine out of ten excessive drinkers are not alcohol dependent. But how would they know that? What's the measurement there? If you're an excessive drinker, what makes you think that you're not dependent on alcohol? It is a very blurred line. And even if you're truly one of those people who can have a few sips and walk away, the old adage that alcohol in moderation is good for us is patently false.

01:07:38:04 - 01:08:16:20

Erin Croyle

For decades, we've been led to believe that a drink or two several days a week could help in preventing heart attacks and strokes. But in early 2025, the U.S. surgeon general at the time, Dr. Vivek Murthy, urged warning labels be updated to include a heightened risk of at least seven different cancers, including breast, throat and colon. According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.

01:08:16:22 - 01:09:01:05

Erin Croyle

Let me repeat that and remember what I just said earlier. We are overconsuming and underreporting. So in his report, he said even consuming just one drink per week, one five ounce glass of wine per week increases cancer risk by 10% in men and 16% in women. Why is alcohol so risky for caregivers? For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need.

01:09:01:07 - 01:09:46:09

Erin Croyle

Respite, support, empathy, space to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality. Unfortunately, the solace that booze brings is temporary and toxic, often creating more problems. In addition to the long term cancer risk. The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgment, and a whole host of other things that can make caregiving more difficult.

01:09:46:11 - 01:10:25:16

Erin Croyle

And of course, if you're unable to recognize that alcohol use is exacerbating what ails you, a cycle is established drinking to ease what ails you in turn causing more ailment, which leads to more drinking, which can lead to problem drinking and eventually potentially dependence. So what's a caregiver to do? Given what we know about the dangers of alcohol use and the demands placed on lifelong caregivers, we owe it to ourselves and to our loved ones to take a closer look at our consumption.

01:10:25:18 - 01:11:01:18

Erin Croyle

There are many self-assessment tools available online, and I'll put a few in the show notes. You just need to be brutally honest with yourself when you take them. Most importantly, know that there is absolutely no shame in needing help. Alcohol is an addictive drug. Building tolerance and dependence is more common than we know because it's pretty much the only drug out there that is not only socially acceptable to use, but encouraged to use virtually everywhere we go.

01:11:01:20 - 01:11:30:23

Erin Croyle

That whole rock bottom, sloppy alcoholic image is just a caricature ized version of what problem drinking is. More realistic versions of problem drinkers are all around us. It could be you. It was me drinking alone. Drinking early in the day, thinking you should come back or moderate. These are all indications that it might be time to stop. As difficult as cutting back can be.

01:11:31:02 - 01:12:13:07

Erin Croyle

Finding help is easier than ever. Almost every kind of support out there is available in multiple formats. In-person person online apps on your phone. Anything from Alcoholics Anonymous to mindfulness to sober blogs, to sober challenges to therapies, to groups, to coaching, to books. Something is bound to resonate and help you figure out what works for you. And what I can tell you from personal experience is once you pull yourself out and you stop when you wake up in the morning, it feels amazing.

01:12:13:09 - 01:12:34:18

Erin Croyle

And every day that you wake up that you didn't drink the night before, it just feels more and more free and more and more awake and alive. And you just wonder why you didn't do it sooner.

01:12:34:20 - 01:12:58:22

Erin Croyle

Thank you, listeners, for joining us. Check out the show notes for those self-assessment tools for statistics info, How to find help and feel free to reach out to me about any questions you might have. I'm an open book and be sure to share a review. Subscribe like follow. Or whatever it is you need so you get a ping when our next show drops.

01:12:58:24 - 01:13:06:21

Erin Croyle

This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why.

But what happens when test after test just leads to more questions?

Rare diseases are more common than we realize; research surrounding them is what's lacking.

We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

The Center for Family Involvement offers specialized one to one support specific to rare diseases through our Genetic Navigator program.

Learn more about rare diseases and Rare Disease Day.

Smith-Kingsmore Syndrome Foundation

TRANSCRIPT:

Welcome to The Odyssey: Parenting. Caregiving. Disability.

I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. It's a seismic shift I experienced myself, when my first child was born with Down syndrome in 2010.

Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

This podcast explores the triumphs and the hardships we face.

One of the hardest things families go through is the diagnosis itself.

There are an estimated 300 million people with rare diseases worldwide. A disease is considered RARE when it affects fewer than 1 in 2,000 people.

Lack of scientific knowledge often leads to delayed diagnoses and inadequate treatment and care. All of this places a heavy social and financial burden on patients, and in turn their caregivers.

To highlight these issues and in honor of Rare Disease Day this February 28th, I dug deep into The Odyssey vault to revisit my interview with Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the President of the Smith-Kingsmore Syndrome Foundation. Her now 13-year-old son Charlie is one of less than 300 people living with SKS. The story of their diagnostic odyssey is just one example of what so many families go through.

So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey?

Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up.

He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician.

Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician?

Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent.

And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go?

Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing.

Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list.

That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs.

Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off.

All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray.

And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital.

And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis.

So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been.

And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal.

And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together.

Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be.

I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you?

Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help.

So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You

Serious?

Yes. So we,

How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives?

So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really helped me as a parent manage some of his, his behavioral challenges in the home, um, so that I could be a better parent to him. Uh, I got just as much out of it as he did so did, so did my husband. It was really, um, a wonderful experience for us.

So yeah, I mean that was kind of where we were at. We were like, all right, well we have to just really try to help Charlie be the best that he can be. Um, and Charlie was such a trooper and he, like, he really worked really hard in therapy. But, you know, my mama heart was still very sad because we, he, he mis he ended up trading out play dates for therapy dates and, you know, over time not having those play dates , I realize that now, like he, you know, he doesn't have the, the same play skills and is that because we ended up having to do all this therapy? You know, I try not to blame myself because I do think we've done the best that we can do given the circumstances, but you know, it's really hard as a parent to, to not second guess like, did we do too much? Did we not give him like the normal things that he could do? And so, you know, he, I I still feel like we did the best we can, but it was, it's been a journey that's for sure.

And wouldn't you say, I mean, in my experience, because it wasn't 20 hours of therapy a week, but I did find myself with my son taking his sibling to go to Aqua therapy and to go to all these speech therapy and I, I just, I mean I found myself getting angry, but then I also think about societal constructs and the medical constructs where really these therapies, and that's the beauty of early intervention, should be coming to the playgrounds, to the cafes. Um, so the therapists can work with our children in these settings that are natural instead of a clinic or even in the home all the time. Um, and helping facilitate some of the conversations and playing I, which I mean, again, our societal constructs in our insurance system does not really allow for that. Cuz you have to fit so many people into a day in order to get paid. But I just feel like it's, it's not a failing on us as parents. It is a failing on the way that our system is set up and our poor kids. There's this complex that they have to be fixed and um, I, I don't know, I just find it really difficult that in, in this day and age we haven't found a way to make it easier for them to get what they need but also be a child.

I totally agree with you on that. We had a physical therapist, um, Charlie's long-term physical therapist in through early intervention and we stayed with her private um, until he was eight and a half. She would take him to the park. She, we would go to the park and she would try to, you know, if a child would come over she would definitely try to do that. But that was far and few between like that just didn't happen very often.

Sarah we're going all over the place here. So let's go back to the testing and where you were with Charlie. I think you said it was 2015?

Yes. So you know, like I said, we had kind of moved on from the why and what, and we're just focusing on what we could do to help. Um, and we were sticking with our appointments, you know, our yearly genetic geneticist appointment, our yearly developmental pediatrician appointment. And we just happened to be super lucky that it's very interesting story. But one of the specialists that I had reached out to for OS too emailed me instead of the UVA a geneticist about her paper that she was writing on OS two. And so I forwarded it to our U V A geneticist at the time and she said, let's, um, you know what, it's been a while. Let's see if Gene DX will re-look at Charlie's whole exome sequencing. And this was 2018 and a couple months went by, I didn't hear anything and then I get a phone call, the uh, genetic counselor said, Charlie's whole exome sequencing test has been changed to, from a variant of unknown significance to a variant of causing pathological disease.

He sent me the report and there was reference to Smith Kingsmore syndrome, which I had at that point. I had already read the article that had been published, um, which it was, you know, only published a couple years prior and it kind of matched Charlie, but still there were some differences. So, you know, I was hesitant to like fully accept the diagnosis and wanted to continue to reach out and see what we could do. So, um, like I had to do from the beginning, I continued to reach out to these specialists that I had met and I mean I was lucky cuz I know that families have emailed specialists before and that they don't respond because they're so busy. I get it. They have their own patient population or the emails just don't get through to them because in, you know, big hospital institutions, it's hard sometimes to reach them. And I think we just got really lucky. And again, this doctor that we were, um, that had been corresponding with in Seattle, she said, yes, this Charlie does fit that and there's a lot of new information coming out about uropathies, which S K S Smith Kingsmore syndrome is an M enteropathy. So, you know, I think you're in the right,

What is an M … what is that? And then no, it's ok. And actually I you know, I think it would help if you told us some of, uh, the symptoms as well. Um,

Sure. So, um, Charlie has a variant on the gene mTOR. So the gene mTOR is on a pathway that helps our cells and our body communicate if there's a variant, it can cause the cells to change and grow differently, sometimes rapidly. Um, and so because of that, it can cause different symptoms like large head size, large brain size seizures, um, global developmental delay, autism intellectual delay, and there's some other like hypotonia, focal cortical dysplasia. And it can cause some pretty significant changes in your M R I. And I haven't mentioned this to this point, but Charlie had had an M r I already, so we had some information about his, um, brain abnormalities that looking at it at that early prior to having the diagnosis of sks, we were told, well, there's no genetic picture that matches this yet. And that's the thing about genetics is we got told a lot of it hasn't caught up with you yet.

Like there may be something later on, you know, and I think there's a lot of families that kind of sit in that window of waiting to, for the diagnosis to be discovered are like, people are hesitant to say it's this one person has this thing. Like they wanna see that there are multiple people having the same symptoms with this genetic variant. So we, we had our diagnosis, I had a doctor that confirmed it, and then I went back to social media trying to find people that I could connect to and I did. And um, I found a Facebook group. There was like 30 people on it and I started reading and I started sobbing. I mean that was like the, the pivotal point for us. It was like these were our people, these, these families are going through the exact same thing we're going through.

Um, our, the pictures, I was like blown away. Like my son looks like these kids, like they could be siblings, um, even with different hair color, they had so many similarities and um, you know, it just like, I was happy and sad and had so many emotions. Um, but then the balls just kept rolling. Like people were motivated. We found that there were doctors that were motivated and we were able to connect with these specialists that, um, were outside of our state. And luckily we were able to travel and, and meet these doctors and other families who really wanted to start a, uh, foundation so that we can raise awareness of our small rare disease. Because living the life of, of trying to get a diagnosis for an ultra rare disease is such a long, painful journey. And if we can help others get that diagnosis earlier, then we're cutting years off of the, of that pain for them. And now we know there are babies that are getting diagnosed because there's more literature about s K s. I like to think that our foundation has had a part to do with that because we've been pushing to put information out there about Smith-Kingsmore syndrome.

It, it feels like, had there been more early on with Charlie, like with the larger head size in and of itself and what you saw, had that been associated then, do you, I mean, little things like that could have cut that journey for you down so much? No,

Absolutely. And I think, I think now in, in 2023, um, it is because we, we know like genetics has already advanced so much in just this short period of time that there are gene panels that have like seizure and large head and they're looking at, you know, specific diagnoses that match that. So if you present, if your child presents with a specific list of symptoms, then instead of having to get this whole exome sequencing approved, they can do just a specific panel which is cost efficient and helps really kind of hone in on the diagnosis. So I think we are getting to the point where it's getting faster, but there are so many of us that it took so long to get there. And there's still, I know there's still people out there that are living this journey where heir child's diagnosis has not been discovered yet. There are lots of families that are on this undiagnosed journey and hopefully as more time goes on, you know, they'll be less and less. But I think we're gonna be sitting in a, in a time period where genetics is gonna rapidly change.

I mean, yeah, I wrote this article and we'll put a link in our, in our stuff for y'all that are listening, um, interviewing you and some doctors and, and I mean it is, it's changing rapidly and it's advancing rapidly, but it's still, you know, for families that are in it, it feels like a snail's pace. And I can't help but think, you know, there's so much more information now. But what about those families who don't have the privilege that you and I have who are working two jobs who English is not their first language, you know, who are single parents and just don't have the health insurance or the time or the resources to do the research. Is there anything for them? Like is there support for them and, and how do we do better getting this information out to those who, who don't even know where to start looking?

You know, Erin, these are such great questions and I know that there's some work, um, that the, that your center's working on that V C U is working on that are hopefully gonna be helping lots of families in Virginia. I think, you know, social media, I mean, is is definitely a way to help families connect, but we're still kind of missing out on, on ways to really reach these families that wouldn't even go to the doctor to begin with, to, to kind of get the ball rolling and, you know, I think reaching out to or have like having our, our pediatricians be able to have a way to get these families to connect to other families. You know, whether like, especially like not even thinking of a specific diagnosis, but like if our, if our pediatricians are concerned that there may be abnormal or development of a, a child, like connecting them to another family so that they have support, um, because those of us that have been through it, like we wanna support other people, being able to do that in some way, shape or form, I think would be, uh, amazing. But right now, um, I'm not really sure of all the ways that that, I mean, I don't think there's a lot, that lot going on besides the work that you guys are, are getting ready to start, which I think is gonna be incredible for Virginia.

Well, yeah, so the Center for Family Involvement, not only do we have a family navigator program that helps families, um, we match families with similar conditions. So if you have a family who has someone with Down syndrome, a child with Down syndrome, we find a parent through our volunteer program to match who you can talk to. But the beauty of it is we have so many different rare conditions, right? But also cultural differences. And we, we take great effort to find people to find their people, not just with whatever disorder they may be dealing with, but whatever cultural sensitivities that go along with it. And then yes, we have just launched, um, a genetic navigator program, um, which does something similar but with these specific questions about genetics. But, you know, it, it is, it is one of those things where we're there we have help and uh, it's, it's that not everyone knows where to look.

And I think the beautiful thing, you know, we're talking about S K S and we're talking about the Center for Family Involvement, and we can talk about autism and Down syndrome, but I always stress to people that we don't silo ourselves because disability is, is still just such a small minority when you look at our country and our world, right? And developmental and intellectual disabilities are even smaller. And then when you look at rare diseases, according to the National Human Genome Research Institute, there are around 350 million people on earth with rare disorders. So this is a disorder or condition with fewer than 200,000 people diagnosed. And about 80% of these rare disorders are genetic in origin, and 95% of them don't even have a single treatment authorized and approved by the F D A, right? So when we're talking about these things that we're dealing with, it's great to find our people.

And I do like, you know, like I'm sure with S K S, you, you have this, these niches to talk about. And whenever I meet a parent of someone with Down syndrome or a person with Down syndrome, there are certain things we just know about because it's so common within the condition. But when we talk about the bigger movement in helping families and, and helping understand rare disorders, uh, I mean it's, I I I cannot stress how important it's that we work together. That's why I love having this conversation with you and learning so much more.

Yes, I think it's so important that we are supporting each other, um, regardless of what the, our child's diagnosis is because we're going to experience the same challenges, access to medical care, access to specialists, how to write that I E P for certain challenges that your child is going through, how to navigate the transition time period when your child, um, is becoming an adult. So there's so many challenges that we're going to experience that have really nothing to do with our specific diagnosis, but do have to do with those larger symptoms that our, our children's share. And so together, you know, we can really kind of make a bigger impact, not only with our own children, but with helping others. I really think it's important to give back to those that are starting off the journey, not just how to find the diagnosis, but how to access things in their community that can help their, their child, help their family to be able to, you know, have just a more quality, better quality of life.

Absolutely. And you know, something you said earlier really struck me because it's so common with so many families, is that you have to have a diagnosis to, you know, for your I E P, which is just, it's such a ridiculous thing that schools put upon families. A developmental delay is a developmental delay. We don't need to categorize it into a certain diagnosis or ID or DED or whatever, ed. I mean, it's, it's categorizing and labeling is doing such a disservice if we could just treat the student and not worry about, uh, uh, it just, uh, it's baffling individualized education plan. Look at the individual, the diagnosis should have nothing to do with it.

Well, Erin, I think we could have a whole other podcast about IEPs, ,

I think you're right.

And the challenges that we face in, in, in Virginia and probably in every state, but yes, I I we have been fighting that battle and it's, it is very true. Like the labels do not really define our children. Putting the resources together to help each child meet their milestones and be able to access their curriculum and access their surroundings and be a child is what really the focus should be on. Hmm,

Absolutely. And you're right. I, I could dive into this and that is a whole wormhole that I'm gonna keep closed because we need to, uh, we need to do an entire podcast on that. Sarah's the, the thing that I see in my family and, and some of the struggles I see have nothing to do with my son with a disability. It just has to do with everything that goes along with it. Like we've been talking and my son has, or so my son, I have three children and, and Arlo, my oldest has two younger siblings. And I see how all of the things that I have to do to support him, impact them, and they roll with it so easily because it's just part of their life. But sometimes they do feel it. And I think you kind of have the opposite, right? You have two older children. I mean, how has that journey been for them? Like, how has it been difficult? Are they understanding, are they supportive? What's that been like as a whole family?

I mean it's, you know, when you have a, a child that is, that has struggles with either developmental delay or intellectual impairment, autism, any, any diagnosis like that, it's a family affair no matter what. Right? So I think having a younger child when therapy started, um, you know, he was an early intervention. So we, I did everything during the day while my kids were at school. But then as he aged out of early intervention and went into the public school system, everything became after school. And so it was very taxing on everybody. We had to divide and conquer often, um, where one parent is taking one child to do their extracurriculars and the other parent is doing the therapies. And I had three kids. So my middle son Brady often went with me and Charlie to do the therapies. So he has really kind of been living the life of, um, of that, um, right next to Charlie, like the longest where my oldest older son was, is five and a half years older.

So he kind of already was, you know, on the path of what sports he was into. And, and so we, we, you know, divided and conquered. We luckily, um, had grandparents that live in the area, so they also were able to help. But there were times where we had no help and it was just us. And that becomes a true family affair. I definitely recommend looking to your therapy centers, to your pediatricians to find sibling classes. You know, we did those over the years. Both of my kids participated and they were always really helpful. Empathy is is something that comes from within, but also sometimes kids need to be taught a little bit about empathy and going to those classes, I found that my kids came back like refreshed and more, had more of an understanding and also making sure that they had time for themselves too. And even if that was, once I put Charlie to bed, I did movie night with just my older two, cuz that was all we could manage to, to pull off. I make sure that we have time for each child, but that's, it's an exhausting task as a parent to, to do that. You know, I definitely feel for, for all parents that are going through that,

It's really hard. I find myself struggling and realizing that I need to like find someone to be with my oldest who's 12, who should be able to stay home alone so I can spend time with the other two. Sometimes he, my oldest just will not do something. And it, it really, like, you can be out like exploring a town and looking at shops and he'll just refuse and wanna go home and there is literally no stopping him. And so, as hard as it is to like, not have him included, sometimes it's the best thing to do for the other two to experience things that they wanna do. And it's just, it's such an inner conflict dealing with this all the time. And especially when, like, we don't have family nearest, we have no supports. Every support we have is hired or asking a friend to do a favor that I might not be able to return. So I don't wanna ask them.

Yes, I to I totally understand that. And it's, it, you know, anything that we do in this house after seven o'clock is not with Charlie because that is the, that's the bedtime for him. And if we vary from that bedtime, then we do not have the best version of Charlie. And, and no, it's not fun for anybody. Um, so Erin, we, that happens to us a lot also, and there's a lot of inner conflict as a parent because you, you know, and I, I try not to, um, look at other families who are experiencing those things as a whole and rec and, and then, you know, you realize that you're not able to do that as a whole. Um, because I don't wanna put myself back in that cycle of grief, but it's very easy to, to be able to compare.

It really is. And I love that you said that, Sarah. I love that. You know, you just don't compare because it, it can be hard, especially like hanging out with my brothers and their kids, and it's just seeing how different their life is just by some chromosomes, you know, it's, it's really interesting. But yes, the but there are things that they'll never get to experience. There's joys and struggles that are so unique that they'll never know. And I guess that's the beauty of finding your people, right? Because you can share with them. And I wanted to ask you too before we run out of time, because I think what is unique about a lot of groups that we find, and what I heard when I spoke with someone that works with your organization is how much the doctors learn from parents like us because we are so busy researching because we have to, because there is no research out there on some of the conditions that people face. So as parents, we are as much a part of the medical teams in many cases as, as the doctors. I mean, has that been your experience?

100%. First of all, my advice to other families are if you are not being treated at that level with the, the team that you're working with, seek another team. Especially when you're on the journey to a diagnosis, you need to be heard and you need to be respected. And you know, people are human. You're not always gonna have that path. So if you're not finding that path, I recommend trying to seek another team, seek another specialist if you can, because you definitely need to be heard and respected in order to help your child get to that diagnosis. I, I mean, I've l I've learned from so many of medical professionals over the years, not just about Charlie's diagnosis, but others. And many times the ones that are, that stick out to me are the ones that always say, I learned from the families. The families are teaching me along the way. Um, you want that partnership, that partnership is so important. You want to feel that they really do understand and and want to help you.

Yeah. It's, it's amazing to me the relationships that you form with doctors and nurses and other professionals because of this. And I, I had to like, I was someone who never needed to see a doctor and then all of a sudden my first child stopped moving and emergency c-section and, and like my whole world flipped upside down. Right? And now I'm like talking to doctors all the time and I've learned so much. They're not like on this pedestal that we put them on. And one of the most important things I think, that I learned from one of my son's specialists is that it's a lot of guesswork and you don't realize that like they're just throwing things against the wall hoping it helps. My son has immunology stuff going on that's so complex and not understood that it's not even an official name for it. Right. And one of the doctors I worked with, I was like, can I read something? I wanna understand what these blood levels mean. He's like, there's no research to read on this. No one's been able to even see this before. This is first. So yeah, if you have a doctor that's dismissing something you're saying and doesn't wanna listen and, and doesn't take your concerns seriously, find a new one.

Absolutely. But easier said than done, especially if you have insurance that dictates exactly who you're supposed to go to or, um, you have language barriers so you don't even understand how to get, get to the, the other, um, specialists that could possibly see your child or see you. It's definitely part of the journey and it's hard, but I think that's where family supports groups can come into play. Or you know, what the Genetic Navigator program where you have, you know, if somebody is let, if somebody tells me in the beginning their journey that they're struggling, even with like early intervention therapists, I always say, if it's not a good fit for you, then it's not gonna be a good fit for your child. Like, you gotta make sure that you feel good about it because you want to learn from them and you want them to help your child. So I always try to give that advice to families when I'm paired up with, with somebody who's starting a, a new journey like this.

I think that's why it's so important to find a group to get your ideas and push them off on somebody else. So whether it's the Center for Family Involvement or like you said, you could, I mean, our communities, our individual communities are so accepting. If you have something going on and you don't know what it is, you will be welcomed. People will bend over backwards to help answer your questions. I've found that over and over again. They just wanna help because they know how hard it is. It's just reaching out.

Yeah, absolutely. Together we're stronger. Right?

Together we're stronger. That is so spot on and the perfect way to end this. But before we do, Sarah, is there anything that you'd like to add?

No, I think, you know, this is, this is a really important topic, uh, to put out there so that people know, um, how to get started, um, what somebody else has gone through and, um, what to do when you're on this journey. So I really appreciate all that you're doing to kind of highlight and raise awareness to, um, you know, walking this diagnostic odyssey to getting a genetic diagnosis, especially of rare diseases.

Well, thank you for your work in helping people find out, I mean, patient registries and working with specialists and having medical professionals be a part of your organization. I mean, this is just, this is just so important and, and it's so inspiring, um, your work. Thank you.

Well, thank you very much. It's, you know, it's really important to me that, you know, we raise awareness not just for s k s but for, um, for rare disease in general and for anybody being going through this journey so that we can kind of help them and shed some light on what we've gone through.

Excellent. Thank you Sarah.

And thank you, listeners, for joining us. Check out our show notes for more information on SKS, rare diseases and the genetic navigator support we offer at the Center for Family Involvement.

And be sure to share, review, subscribe, like, follow, or whatever it is you need so you get a ping when it drops.

This is The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that?

It's gotta stop!

There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.

If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude!

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

There are very few studies on how women tolerate pain. This 2022 study explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false.

While there is evidence that period pain is comprable to the pain of a heart attack; renowned gynecologist Dr. Jen Gunter warns that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks.

Research continues to show the importance of limiting screen time for children.

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk.

If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story.

Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section.

My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero.

She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened.

So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December.

And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier.

Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it.

I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive.

That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school.

And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care.

So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm.

And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack.

And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain.

And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion.

When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver.

Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term.

These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids.

So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress.

If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time.

And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight.

And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and you realize that perhaps you're asking too much of these young minds.

If adults have a hard time managing their screen time, how can we expect kids to be able to do it? And if you have any secrets, they're by all means share and I'll pass it along in a future episode. Managing expectations of ourselves and others is another area where an attitude adjustment might be in order. After all, my favorite equation is happiness equals reality minus expectations.

A great way to alleviate so much stress and frustration is to stop expecting others to fill in the blank. Think about it. Kids are not going to magically start doing their chores without reminders. Partners aren't going to be able to read our minds and do what we wish that they would do without talking about it. And we're not going to be able to break every single one of our perceived habits overnight or even by the end of the year.

We need to stop expecting these things of those around us and of ourselves. My own home is a really good example. I have busted my butt over the years trying every visual schedule and first and strategy out there. Guess what? Even with the best tools, most parents and caregivers are still going to need to remind their children to use those tools.

Human prodding is still necessary, and this is especially if disabilities. In the next hour. Santa delivered this beautiful fancy skylight calendar to our home and this bad boy. It will link to our Google calendars. It has a short list for as many people as you want to add and a reward chart to go with that. It has meal planning options.

It's amazing, but it's not magic. An adult still needs to encourage the kids to use it. An adult still needs to hand out the rewards. We've got to stop expecting adult level compliance from children. It's just not going to happen.

The biggest impact we can have, though, lies within us. Most of us are harder on ourselves than anyone around us. So I want to point out a really good starting point, especially for caregivers. Take a very close look at the hours in your days and what your day is filled with. Time and time again, I end most of my days disappointed at what I was not able to accomplish.

And then I'm overwhelmed about what's on my plate in the coming days because of that. First off, it's important to point out that getting an ADHD diagnosis a couple of years ago has helped tremendously in understanding why this is so hard for me. My mind is almost always working in hyper drive mode. Now you tack on the caregiver component of our lives, and in my house again, all three of my children, they have ADHD, which means I'm helping them manage their time, their list, their clothes, their school work, you name it, and doing this in a calm, supportive way with so much emotional dysregulation.

And each of us is not just challenging, it is draining. There's only so much patience that anyone can have on any given day, let alone when you pile all those other stressors on top. So I started looking at each hour of my day to understand why it feels like I can't get anything done. And after doing this time on it, the problem was obvious.

I was trying to do the impossible. And this is a level of impossible you can't see just by looking at my calendar. But it's just based on everything else that happens in our lives that go unseen, whether by our partners or our supervisors or our colleagues or our friends or our family or our children. Try it. Track your daily activities for a week and test this out.

Because my issue with time management is not due to scrolling through social media or watching TV or playing games on my phone or texting friends. My workday is interrupted nearly every day because of medical appointments or calls from the school nurse or because my son's hearing aids are missing and I need to bring them in, or because someone forgot an instrument, or there's an IEP meeting or a five or four meeting or I have to do paperwork for Arlo's waiver, or there's an appointment with my daughter's behaviorist, or there's a dog training session to get our pop up to service dog status.

I mean, every day there are things outside of my control where people need me and it pulls me from all the other things that I'm supposed to be doing. And the caregivers, I know we don't get personal days. If we have a smidge of time that isn't booked with caring for somebody else, then we just use it for the backlog of stuff piling up when we're caring for somebody else.

And I don't know about you, but my backlog is turning into a massive mountain that follows me wherever I go. It's like a Tetris game that I look at and see if I can take something out and get it done without triggering something else to collapse and pummel me like an avalanche full of menial tasks that never stop coming.

And I can't stop this avalanche. I set up all the supports that I can afford around me, and so the only thing left to do is to adjust my attitude. And so the first thing I started doing is to embrace that I am just going to be late. I hate being late, but I can't help it in most cases.

And I actually want to thank Mel Robbins for this one. Another podcaster, the author of the book Let Them, which I've been listening to, and it's freeing. I don't normally jump on a book bandwagon, but so far I'm more than halfway through. And a lot of it just just lets you feel free. It's the idea of let them is that you can't control what others think about you, nor should you.

And it's true. So as much as I hate being late, it's out of my control. And when I try to push everyone else to be on time, the commotion and stress and frustration it causes, it's not worth it. One appointment bleeds into the next. A five minute task can take 30. And suddenly I'm leaving for my 430 meeting at 445.

I still hate being late, but instead of dwelling on it and feeling terrible about it, I'm going to apologize, move on, and chalk it up to being a really difficult time in my life. Speaking of all those appointments and meetings, enough. One thing I've learned after 14 years of being a parent caregiver is that no one has all the answers.

Not doctors, not therapists, Not teachers. Nobody, y'all. I wish I could have recorded my daughter's session with that behavioral therapist in December. This professional was trying to reason with Maya about a reward system to help with the basics of getting to school each morning on time. And it's something I've been working on since Maya was three. To no avail.

And so when the therapist asked Maya about a reward that might be meaningful, Maya replies, $1,000,000. And Maya was dead serious. And as the therapist pushed for more reasonable options, Maya didn't hold back and kept throwing out really difficult rewards to fulfill, making it a really difficult system to set up. And in that moment, I just gave up.

And I observed my gorgeous Pharrell baby make this poor person work so hard for every minute that she was putting into this session. That's the thing about parenting. Everyone has the answers. There are books. There are professionals. There are fellow parents. But you know what? All it takes is one kid that doesn't fit into a mold. And this is why giving zero FS is a shift that pretty much every caregiver needs to make.

Caregiving is such a unique existence. Especially if you have a loved one with invisible disabilities. The judgment is everywhere. Family, friends, teachers. People observing in public. If I try to talk about any of this stuff with someone who isn't a caregiver, nine times out of ten, I'll get the whole well, my kids would behave that way if I let them.

Or you just need to blah, blah, blah. Or you should just blah, blah, blah. Or why don't you try. Bla bla bla bla bla bla bla bla bla.

If only it were that easy. And also for you for putting this on me because I am trying so hard and you saying that it's my fault or it's my parenting. Well, you don't know me then. And I'll tell you what perimenopause is helping me give far fewrer if you seek Amy's; Anyone remember that Britney Spears song?

Anyway, when my blood clot was first discovered, I was ordered to stop hormone replacement therapy, and suddenly my hot flashes were full on sweats. I mean, last night, my sweats and chills hit so badly I had to lay on the ground. I could barely breathe. It was it was something. And I think as women, we laugh this stuff off and we have heard other women in our lives laugh about it, but it's no joke.

And when you're living in it, it is absolutely miserable and distracting and at times unbearable. My brain and body are going haywire. And it last three years. So with all this, I've even given up worrying about my potty mouth. I've tried to cut back on swearing for years, but right now I'm embracing my inner Roy Kent and letting the F-bombs fly freely.

Except I'll bleep them for the podcast. It's funny, my dad hated swearing, and if he were buried, he'd be rolling in his grave. I'm not sure what the equivalent of that expression is when it's a box of ashes that my mom keeps on the coffee table next to her. Maybe he's scattering in his box. I don't know. But I like to think that if I could talk to my dad, he'd give me a free pass for sure, on the swearing. Perhaps that's the biggest adjustment I'm making in my life. Finding joy and kindness wherever I can until I'm able to produce my own Roy Kent fresh in my mind. Because my 12 year old and I are watching Ted Lasso together. It's my second time and his first and we just finished season two of Shrinking by the same creators, by the way.

These shows just ease my mind and they soothe my soul. You know those periods of life where you're pretty sure things will be okay, but it's just really hard and there's nothing tangible to look forward to. No getaways, no celebrations. You're just getting by. Simple things like a TV show to look forward to that you can talk about that makes you smile.

It's a pretty beautiful thing. The arts are there for a reason, right? But these two shows in particular touch on mental health in a way that not many others do. They're fictional examples that remind you that even though folks around you seem like they have it all together, they're going through their own stuff, they're figuring it out just like we are.

And it's messy and it's embarrassing. But we're all here getting through it together. Just look for that light at the end of this tunnel and keep on keeping on.

Thanks for listening. Be sure to review, subscribe, like follow or whatever it is you need to get a ping when the next episode drops. And while you're at it, drop us a comment and let us know what you're watching these days. This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

We're trying something different this episode: our first ever anonymous "airing of grievances."

Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.

When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.

What about you? What secrets do you wish you could share?

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

TRANSCRIPTION:

01:00:06:19 - 01:00:36:11

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

01:00:36:13 - 01:01:03:16

Erin Croyle

One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.

01:01:03:18 - 01:01:35:14

Erin Croyle

It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.

01:01:35:16 - 01:02:04:18

Erin Croyle

It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.

01:02:04:20 - 01:02:21:05

Erin Croyle

For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.

01:02:21:07 - 01:02:45:01

Erin Croyle

My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.

01:02:45:03 - 01:03:13:14

Erin Croyle

Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.

01:03:13:16 - 01:03:45:13

Erin Croyle

And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.

01:03:45:15 - 01:04:14:11

Erin Croyle

What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.

01:04:14:13 - 01:04:48:13

Erin Croyle

Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?

01:04:48:15 - 01:05:14:09

Erin Croyle

One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.

01:05:14:11 - 01:05:37:14

Erin Croyle

Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.

01:05:37:16 - 01:06:05:05

Erin Croyle

I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.

01:06:05:07 - 01:06:30:14

Erin Croyle

Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.

01:06:30:16 - 01:06:57:11

Erin Croyle

Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.

01:06:57:12 - 01:07:28:02

Erin Croyle

Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.

01:07:28:03 - 01:07:50:20

Erin Croyle

So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else.

01:07:50:22 - 01:08:19:06

Erin Croyle

My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion.

01:08:19:08 - 01:08:42:14

Erin Croyle

Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us.

01:08:42:16 - 01:09:05:22

Erin Croyle

The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite.

01:09:05:24 - 01:09:30:04

Erin Croyle

They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children.

01:09:30:06 - 01:09:57:17

Erin Croyle

I keep trying to let people know that you just have to talk to them as you would anyone else. They're wonderful human beings and have many things to share and give to our community. As a professional with a disability, I can feel overwhelmed and frustrated when reasonable accommodations are asked for and not given. Another parent says, Just because my teenage child doesn't communicate traditionally doesn't mean you should talk to him like he's a toddler.

01:09:57:23 - 01:10:24:04

Erin Croyle

He's a teenager, for crying out loud. Another parent says, I wish my peers understood how complicated caregiving is. I don't talk about this openly because it's nobody's darn business. But total care means total toileting, shaving, teeth brushing, dressing, feeding. For girls, this means feminine hygiene. For boys, it's washing their privates. It's navigating through puberty. And later, sexual needs.

01:10:24:06 - 01:10:49:03

Erin Croyle

That whole birds and bees talk that parents get all stressed about with their typically developing kids. Imagine having to search for and hand over a social story about erections and masturbation to your teen. Everything in our lives is just next level. It's wild. Another parent said, I love my child and will do anything for them. But I hope God never gives you more than you can handle.

01:10:49:08 - 01:11:11:21

Erin Croyle

It is patently false. I'm hanging on by a thread most days. Screaming mercy on the inside. But I can't say that out loud because my child does not deserve to hear that. Sometimes I wish I could just be a parent. I'm tired. I'm getting old. My body needs a break. What you're not prepared for is that caregiving last so long.

01:11:11:23 - 01:11:35:03

Erin Croyle

My adult child with a disability still needs so much care. That includes toileting. Health care. Transportation. Preparing meals, coordinating appointments, and more. When my other kids were young, it was just part of the drill because I was taking care of everyone. But the siblings are grown now and all of my friends have moved on. There are no more school programs or playdates, but I'm still providing the same level of care for my adult child.

01:11:35:05 - 01:11:56:14

Erin Croyle

Most days I don't mind, but sometimes it can feel really overwhelming. A parent of an adult child with a disability shares. I fantasize about getting divorced, but the hardship it would create is far worse than remaining in a miserable marriage. When you have a child with significant support needs, there is so much more to consider than personal contentment.

01:11:56:16 - 01:12:24:22

Erin Croyle

Everything is more complicated finances, employment, health care and being tied to your co-parent forever because there is no when they turn 18 for us. I mean, there is. But it actually gets harder when our kids become adults. Not easier. Another parent shares. I thought that when my child became an adult, things would get easier. I was wrong. Sometimes I feel like I can't trust hope and happiness when it comes to her living her life.

01:12:24:24 - 01:12:47:16

Erin Croyle

I feel like I'm always waiting for the other foot to drop, which it usually does, And somehow I'm always shocked. And then I mourn what I wish her life could be. I remember her as a happy child, and it breaks my heart. So I try not to dwell on that too long. There are times I feel like a hypocrite when I help other families because I can't fix my own.

01:12:47:18 - 01:13:05:11

Erin Croyle

Another person wrote, People ignore me. Now they leave me alone. I'm sorry if I have not taken the time to connect with you, but I am dealing with my adult children who are not like your adult children. We have the best time and I absolutely enjoy spending time with my kiddos. But it seems apparent that they will never leave home.

01:13:05:11 - 01:13:32:18

Erin Croyle

And I'm absolutely overwhelmed. Exhausted. So freaking tired. And I just want to go hibernate somewhere. But I cannot. My children need me. I have a new disability diagnosis thanks to having had COVID and not recovering fully. I wish you could understand COVID is most certainly real and it has affected so many people with lingering issues. We have had to deal with, even after COVID has supposedly gone away.

01:13:32:20 - 01:13:56:10

Erin Croyle

A family member of an adult with developmental disabilities who's also a professional at the Partnership for People with Disabilities, says it's always interesting to share what I do with others. When I do share my profession with other professionals or friends who have not had personal or professional experience with people with intellectual disabilities. There's always a visible change in their demeanor.

01:13:56:12 - 01:14:24:13

Erin Croyle

Usually shock or confusion. I then have to explain what intellectual disabilities are and how my job works. I wish more people recognized that there's this whole population of people living and breathing in their world. People with ID live and work in their community and access the same level of community based amenities, services and supports. But it's as if most people never consider their existence.

01:14:24:15 - 01:14:59:12

Erin Croyle

I think this reaction speaks to the lack of integration of people with intellectual and developmental disabilities in our lives. Beyond the school setting, another professional who has a family member with disabilities said I wish more health care providers understood the importance of and prioritize spending more time with patients with intellectual and developmental disabilities during appointments. People with I want to be involved in their own health care, but they need more time and direction to do so.

01:14:59:14 - 01:15:29:06

Erin Croyle

I also wish more health care and community based providers like local health departments and public services on the city and county level understood that using plain language in their communications doesn't just benefit people with modifying materials, so they're universally easier to read and understand is beneficial for many other populations and could increase the uptake of programing or health care recommendations.

01:15:29:08 - 01:15:58:03

Erin Croyle

And this last one is from someone who does not want to remain anonymous. My friend and colleague Jill Rose is just the epitome of positivity most times and had this beautiful sort of grand finale of a story to end on. Thank you, Joe. When my daughter was born 14 years ago with Down's Syndrome, one of my many initial fears was that I wouldn't be able to communicate with her.

01:15:58:05 - 01:16:22:05

Erin Croyle

While her verbal skills are at the lower end. We do still communicate in our own ways. We sing and dance a lot. We've developed our own language and words. For example, we call each other Mushi, which is just a word she made up years ago. She's much more brave than I am. She rides all of the scary rollercoasters with hubby while I sit on a bench and watch the bags.

01:16:22:07 - 01:16:44:21

Erin Croyle

When we go to the doctors and I have blood taken or need a shot, she knowing how nervous I get, grabs my hand and says, Be brave. She can sense when I'm sad or anxious. It is her unique gift when she senses it, she says It's my turn as she comes to me with open arms. Her healing energy always helps.

01:16:44:23 - 01:17:03:21

Erin Croyle

I gave birth to Sophia, 14 years ago, and if I could go back in time and speak to my younger, fearful self, I would say, Don't be scared. Because in this scenario you're the lucky one.

01:17:03:23 - 01:17:30:02

Erin Croyle

Thank you, Jill. Thank you to everyone who contributed. And thank you listeners. Be sure to rate me as you subscribe. Like follow or whatever it is you need so you get a pain when the next show drops. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

Happy Festivus.

Right now in the United States, more than 53 million family members are providing unpaid and mostly unseen care to the loved ones in our lives. According to the National Council on Aging, that's an economic value that totals more than $470 billion.

Since November is National Family Caregivers Month, we wanted to highlight what it means to be a caregiver and why everyone should be looking out for the caregivers in their lives.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Read more about how different caregiving and parenting are on the Center for Family Involvement's blog:

CAREGIVING AND PARENTING ARE NOT THE SAME

CAREGIVING AND PARENTING ARE NOT THE SAME: BACK TO SCHOOL EDITION

Learn more about disability services and how to become a paid caregiver.

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work with the Center for Family Involvement and VCU's Partnership for People with Disabilities.

01:00:37:05 - 01:00:47:20

Erin Croyle

I started this podcast because the media rarely highlights the issues that impact us so deeply. Caregiving is one of them.

01:00:47:22 - 01:01:10:03

Erin Croyle

More and more, we're seeing the term caregiving lumped in with general parenting duties, diluting what it truly means to be a caregiver. In honor of November being National Family Caregivers Month. I'm going to break down how parenting and caregiving are fundamentally different.

01:01:10:05 - 01:01:38:17

Erin Croyle

I'm going to keep it real with you. Listener. This episode is really late. It should have been out last month and that episode is still coming. It's in honor of October being National Disability Employment Awareness Month, and I've interviewed two wonderful guests already and that will be out soon. But like so many parents and caregivers, I know things are just relentless.

01:01:38:19 - 01:02:07:08

Erin Croyle

And I am at the point in my life where I recognize that it is impossible to meet all of the demands placed on us as parents who are also caregivers. But it's almost as impossible to realize that what we as parents and caregivers come to know is our normal is not the norm and it is so important to point this out, not to wallow in how hard it can be because nobody has time to wallow.

01:02:07:14 - 01:02:33:23

Erin Croyle

And who the heck wants to anyway, right? But it's important to validate the feelings of overwhelm and burnout and exhaustion and sadness and frustration that we feel this society we live in isn't designed for kids like ours, and it's not kind to caregivers either. Even politics. And we don't really get into politics, right? I leave that out of this.

01:02:34:00 - 01:03:03:20

Erin Croyle

But for caregivers, there are things you need to know during voting cycles about the way that our government structures work that most people don't even know are there. You have to understand health care and Medicaid and waivers and supports that your children will need when you're gone. And you have to face the extreme difficulty of knowing that you could very well outlive your child.

01:03:03:22 - 01:03:33:20

Erin Croyle

Do you have to set up things for when you're gone to make sure that your kid is going to be okay? It's something else. And I don't think that as caregivers, we really talk about that openly. That kind of melancholy that we live in. And this isn't just about those significant disabilities where someone will need care their whole life.

01:03:33:21 - 01:04:08:11

Erin Croyle

I mean, that's certainly part of it. But I've got to be honest, my own able isn't blind in me to how difficult it can be to care for someone with ADHD or mental health struggles. Neurodiversity. Physical Disabilities. Even though someone will be able to live on their own one day with less supports does not mean that the caregiving to get them to that point is not substantial.

01:04:08:13 - 01:04:41:04

Erin Croyle

It's a lot. And just getting a diagnosis for these invisible disabilities in rare conditions is really hard. And that alone takes time. Believe me, I'm there. I have three kids and neurodiversity is through and through in our household. And and we didn't really see that until later because my oldest child's needs were so great. The idea that there was neurodiversity in my youngest, I don't think that I picked that up soon enough.

01:04:41:04 - 01:05:12:15

Erin Croyle

And I'm still struggling to recognize what they need and the differences. And that's coming from me. Who was diagnosed late in life with ADHD, who's understanding my own nerd adversity and how that's impacted me my whole life. There's such a stigma to so many disabilities. Neurodiversity is whatever you want to call them that we fail to recognize the accommodations and supports and understanding that is needed.

01:05:12:17 - 01:05:44:09

Erin Croyle

And unless you experience that, you're not going to understand it. And in fact, I know in some ways those invisible disabilities can be harder because you have to constantly prove to people that it's not a spoiled kid, that it's not a bad child, that it's not bad parenting. It's not. I used to joke that no, doesn't really work in our house and I could feel the eye rolls from the family elders.

01:05:44:11 - 01:06:31:03

Erin Croyle

And I'll tell you what. No does not work in our house. It just doesn't. And it's hard. My kids aren't spoiled. Just had to take a completely different route of how I view parenting than what I thought it would be. And I often wonder who I would be if my kids were non-disabled and neurotypical. And I'm actually really grateful that the differences in my kids have enlightened me to the differences that we need to accept in this world, in this society, in our schools, everywhere.

01:06:31:05 - 01:07:01:01

Erin Croyle

And we're still not there. That's why we really need to highlight how complicated and different the caregiving component of being a parent caregiver can be. My first child, Arlo, as I mentioned in the intro, was diagnosed with Down syndrome soon after he was born. Later came other diagnoses hearing loss, sleep apnea, ADHD for him as well. Anxiety. He's immunocompromised.

01:07:01:03 - 01:07:28:14

Erin Croyle

We've dealt with heart issues both early on and then later asthma, and then most recently something called ITP or chronic thrombocytopenia. This is low platelet counts that you discover in routine bloodwork, and that routine blood work is routine for my kid with Down's syndrome. But most kids don't have to have annual bloodwork to monitor thyroid and iron and all of these things, right?

01:07:28:14 - 01:07:56:06

Erin Croyle

That's just another caregiving aspect that is necessary and important, but it's a lot. And thankfully, my son is very good with doctors, but early on he wasn't. And it was torture. Taking him to see an EMT and have to hold him down to get his ears cleaned or literally wrap my body around him for his blood draws. It rips your heart out.

01:07:56:08 - 01:08:21:19

Erin Croyle

And in so many cases, we don't really have anyone to talk to because if you turn to family elders who haven't been impacted by disability, I mean, I remember one person saying to me how parenting is all about disappointment and letdowns and you got it all at once when your son was born with Down syndrome. As a new parent, I just kind of nodded and thought, okay.

01:08:21:21 - 01:09:00:17

Erin Croyle

And that is the biggest bunch of baloney I've ever heard for children who are neurotypical non-disabled. The decks aren't stacked against them at birth right. But if you're in a wheelchair, if you have hearing loss, if you have any sort of thing that needs extra help or assistance, even though it's there, my gosh, it's hard to find. And it takes someone who can have the tenacity, the patience, the time and the energy to find all the supports that are there.

01:09:00:19 - 01:09:27:06

Erin Croyle

And even the supports that are there are so tough to get. I mean, waivers, my son has elopement issues and we have a waiver for him. And we wanted a fence as an environmental modification to help keep him safe in our yard without having to be out there constantly just to give him space without someone hovering over him.

01:09:27:08 - 01:09:53:04

Erin Croyle

And it took five years to get that approved. Much of that because of errors from the people working in the waiver system. I mean, that's the sort of thing that people are dealing with, the supports in place like respite care, personal care attendants, the hoops you have to jump through to get those supports are so tough to get.

01:09:53:06 - 01:10:21:22

Erin Croyle

And the people in those roles, they don't get paid enough or they're not really invested or they're college students, so they're in and out and gone. And as parents you have to train them. So you have to train a caregiver every couple of months. It's exhausting. And when parents or family members are providing the care, it is really difficult for them to be paid as caregivers.

01:10:21:24 - 01:11:12:10

Erin Croyle

Most states don't allow it, certainly not under 18. And the income loss that you face as a family who has to support children with disabilities, even if you have help around, it's substantial and it just creates this extra stress in your life that you really don't need. Even the term caregiving is being watered down. I get the grandparents and extended family that service parents gravitate towards the caregiver title because it is kind of a catchall, but a caregiver by definition and as a family member or paid helper who regularly looks after a child or a person who is sick, elderly or disabled, all parents serve it caregivers from time to time.

01:11:12:12 - 01:11:37:12

Erin Croyle

But that's not the same as the primary caregiver role that so many of us took on the moment we became a mom or dad. Now this matters because we need to acknowledge how different and challenging that hybrid parent caregiver role is. It can consume us without realizing it because we love our children so deeply, will go to great lengths to ensure their comfort.

01:11:37:14 - 01:12:04:20

Erin Croyle

And like I said before, that becomes our new normal. But again, it is not the norm. A really good example of this is part of why this episode is so late. So my family got hit with a stomach flu and it hit my daughter first and then I got hit because I had to steam clean the car with the mess that was even though my kid was nine, they couldn't really get it in the bucket.

01:12:04:20 - 01:12:31:23

Erin Croyle

And that's okay. And even though I wore like a mask and gloves, I still got sick a couple of days later. And my gosh, it was miserable. Well, then my 14 year old, he gets the stomach flu, but he's not able to really say that to anyone in a in a conventional way that makes us understand. So he's at school and I had already warned folks at school, so they're right there as part of the caregiving aspect.

01:12:31:23 - 01:12:59:14

Erin Croyle

I'm in constant touch with my children's school, both my son, my oldest, so three kids, so my oldest with Down Syndrome and ADHD and so many other medical complexities. And then my youngest with ADHD, who experiences anxiety, which can manifest in stomachaches and and emotional dysregulation. So I hear from their school a lot.

01:12:59:16 - 01:13:21:10

Erin Croyle

But when my 14 year old gets the stomach flu, it's it's an event. If he has to throw up, he doesn't really tell us. He just kind of does it. And so I have to pay attention to the nonverbal cues because he'll do this thing with his lips. That's, you know, he only does really when he's about to throw up.

01:13:21:12 - 01:13:47:08

Erin Croyle

And then I have to help him catch a bucket. And so as I'm on the mend from the stomach flu, I am then helping him get his vomit into a bucket. And I pulled an all nighter because every time I he would wake up and Russell, I would be ready to help him. And also because he was sleeping and laying down, I had to help him move forward so he wouldn't get sick or choke.

01:13:47:10 - 01:14:13:15

Erin Croyle

I mean, it was tough. And most 14 year olds, you're going to bring him some ginger ale and give him some Tylenol and they're going to be okay and they're going to watch TV. But for me, this was round the clock care. And that's the case with a lot of illnesses. And that's just one example. Several years ago, I wrote a blog called Caregiving and Parenting are Not the Same.

01:14:13:15 - 01:14:39:03

Erin Croyle

And to this day, that blog gets more traffic than probably anything I've written. And so I'm going to read some of those comparisons to give myself some grace in what has been a really tough year. I'll also put the article link in the show notes. You can read it in your own time, and I would love to hear what differences you recognize in your own circles and in some of the challenges that you face.

01:14:39:06 - 01:15:07:18

Erin Croyle

Because like the title of this podcast, I think we need to acknowledge these differences and support each other and also let others know what we're going through. Because I don't know about you, but this experience of caregiving can be isolating. You are so entrenched in all of the work that you have to do both for your actual job and then for your parenting role and then for your caregiving role.

01:15:07:20 - 01:15:41:12

Erin Croyle

And then if you have a partner in your life, there's that other children, there's that a pet, there's that there. There aren't enough hours in the day to do it all. And I really think it's important for us to start recognizing that and start really just asking those around us to acknowledge that, to recognize that, and then help fix the structures in place that make it so hard for us to just function.

01:15:41:14 - 01:16:16:07

Erin Croyle

Because even advocacy efforts that we could be doing as caregivers, the people I know are so tired they can't get it together to just advocate for the most simple things. And so because I'm so spent, I'm going to read a bit from my blog and leave it at that. How is parenting different from caregiving? Parents need babysitters. Caregivers need respite.

01:16:16:09 - 01:16:44:09

Erin Croyle

Parents take their kids to well visits and sick visits a couple of times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments. Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team. Parents make dinner.

01:16:44:11 - 01:17:11:15

Erin Croyle

Caregivers feed their children by mouth, by tube, whatever is needed. Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they've also helped modify. Dinner is usually a crapshoot. Parents go to parent teacher conferences. Caregivers go to those conferences. And also IEP meetings.

01:17:11:15 - 01:17:41:20

Erin Croyle

Behavior plan meetings, care plan meetings, person centered planning meetings, Medicaid eligibility meetings. So many meetings. Parents take their kids to soccer practice, drink coffee on the sideline and shoot the breeze with other parents. Caregivers search for a sport or program that is suitable. Fill out piles of paperwork, meet with the people running the program, go for accommodations needed and are on high alert, monitoring their loved one, often jumping in to help.

01:17:41:22 - 01:18:09:06

Erin Croyle

Sometimes even coaching because no one else there will make the accommodations needed for their child to participate. Parents sign their kids up for afterschool clubs. Caregivers contact clubs to see if supports are available. They usually aren't. So they request assistance offered to help change the system or offer support themselves. Caregivers sometimes give up or don't bother asking because it's not worth the effort.

01:18:09:08 - 01:18:35:10

Erin Croyle

Parenting is planning a family vacation to somewhere fun. Caregiving is wondering how you can make endless visits to specialists feel like a vacation because you have no money or leave for anything else. Caregiving is for getting that dream vacation and finding something that's doable because medical conditions make travel difficult. Parents park in the most convenient space available for their family's needs.

01:18:35:12 - 01:18:58:06

Erin Croyle

Caregivers arrive to events early, hoping to secure a disabled parking spot. Those spots are often taken by parents who don't need them but thought 5 minutes don't matter. So caregivers navigate dangerous parking lots, pushing a wheelchair or monitoring a child who might collapse in the middle of the parking lot or run off with no safety awareness of cars.

01:18:58:08 - 01:19:27:16

Erin Croyle

Parents are often sleep deprived for the first few months and years of a child's life. Caregivers are sleep deprived indefinitely. Parents carry a diaper bag. And later some extra clothes and eventually just their own stuff again. Caregivers bags only get bigger in every sense bigger diapers, bigger clothes, and the emotional baggage we carry. But keep buried down below gets heavier as we see our loved ones peers pass them by as the little kid cute fades.

01:19:27:20 - 01:19:58:03

Erin Croyle

Stairs become less kind and more prominent and it stings. But we barely have time to process it because we have to keep on caregiving. Parents rules change when their children become adults. They'll always be a parent, but their work is done. Caregivers will always be caregivers, and their role becomes more complicated as time goes on. So if November National Caregivers Month, how do we care for our caregivers?

01:19:58:05 - 01:20:32:14

Erin Croyle

We need to be kind to ourselves. We need to gently let others in our lives know how hard this can be. While also letting them know it's not our children that make it hard. I can never say this enough. My children are not a burden. It is the constructs of our society that create the burden. It's not possible to meet all the demands placed on us.

01:20:32:16 - 01:21:08:06

Erin Croyle

And when you're a caregiver and you're literally taking care of someone else, keeping them alive, keeping them well, keeping them out of the hospital, keeping them in a safe space in their own mind and body, that is a lot of work that no one is going to understand unless they've had to do it themselves. And so we need to be more honest about our workloads, about what we're doing in our days.

01:21:08:08 - 01:21:18:09

Erin Croyle

Sure, things are nobody's business, but my gosh, sometimes I think it really helps for people to know what other people are going through.

01:21:18:11 - 01:22:01:16

Erin Croyle

Stop shoulding yourself. I should have taken a shower today. I should have eaten breakfast. I should have gotten this podcast out last month. Should, should, should y'all. There are so many shoulds out there that we could wake up tomorrow and everything could change. What we really should be doing is prioritizing what matters. And so if you have to miss a deadline or just know that some days the only thing we can do is meet the most basic and primal needs around us.

Erin Croyle

So be kind to your family, to yourself. And when everything feels like too much, toss out all those arbitrary rules that you make for yourself and others make for you. Ask for some help. Step outside and breathe. And remember, you're not alone.

Erin Croyle

So listen to all my fellow caregivers out there. Happy national caregivers Month. Take a load off. Do something for yourself. Chill out and be sure to share. Review. Subscribe. Like follow. Or whatever it is you need to do to get a ping When my next episode drops. This is The Odyssey. Parenting. Caregiving Disability. I'm Erin Croyle. We'll talk soon.

Meaningful inclusion is possible, if we're being honest though, it's so rare that most folks don't even know what it looks like.

In part two of this episode on inclusion in public schools (be sure to check out part one!), Erin Croyle has educator and advocate Trina Allen break down what co-teaching is, how it works, and what can be done to make truly inclusive education a reality.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Talia A. Lewis' Working Definiciton of Ableism.

How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done.

National Center for Education Statistics releases various annual reports and as well as topical studies.

More on the Ithaca City School District.

Inclusion benefits EVERYone.

Learn more about the Individuals with Disabilities Education Act (IDEA).

TRANSCRIPT:

01:00:07:11 - 01:00:39:01

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I joined the caregiver club 14 years ago when my first child was born with Down syndrome. My journey weaved its way here, working for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

01:00:39:03 - 01:01:09:07

Erin Croyle

This podcast highlights the joys and hardships we face. Celebrating how amazing the odyssey of parenting, caregiving and disability can be. While examining the spiderweb of complex issues, we're tangled in, The fight for meaningful inclusion in our schools is a struggle for so many of us. In our last episode, I spoke with special education teacher advocate, activist and parent Trina Allen.

01:01:09:09 - 01:01:31:21

Erin Croyle

We left off talking about how gut wrenching advocating for an inclusive education can be, especially as our kids get older. And we're picking up right there with Trina telling us not only that it can be done, but how we can do it.

01:01:31:23 - 01:01:47:19

Erin Croyle

I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track. The thing is, like a kid with Down syndrome is one kid with Down syndrome.

01:01:47:22 - 01:01:50:04

Trina Allen

Thank you!

01:01:50:06 - 01:02:17:19

Erin Croyle

Yes, Autism is one kid with autism. CP And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is. I think that our schools, once we get to a certain level, it's not parents failing, but it's their schools not offering enough options for kids with more significant needs.

01:02:17:19 - 01:02:34:24

Erin Croyle

Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that.

Trina Allen

Fix it!

Erin Croyle

They reach a certain age and there's no choice anymore, right? No other option anymore.

Trina Allen

So while we're on the fight for inclusion, it cannot be on the back of our individual child and listening to what he needs in the moment is the biggest fight of ableism. Listening to him is the biggest fight of Abel's that you will ever do with him. The issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things.

01:03:03:03 - 01:03:27:24

Trina Allen

That math class needs to be structured on. These are the standards, and every single kid in it is at a different place and it needs to be supported in that way. And so do I think it can be done? my God. Math is like the easiest. You know, it becomes more complicated in like history and English, but it doesn't have to be if the design is universal.

01:03:28:01 - 01:03:47:17

Trina Allen

Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son. That curriculum needs to be created with him and created with the kid at a different level and created with a kid at the different level and created with the kid in a different level.

01:03:47:19 - 01:04:27:00

Trina Allen

And it needs to be individualized. And that is doable with time and space. And what I do like about the current district that, you know, that we both are dealing with is that's the goal. And when the systems have not created all of those levels of curriculum and are displayed by the slide show and are displayed in all those quiet ways that are as equal and that are that his production is as integrated and valued as what they expectation is that his production is the expectation.

01:04:27:00 - 01:04:54:03

Trina Allen

Right. And that there are multiple other children in the class with interesting and independent and specialized production. That model is doable. You know, it's so doable and I can see it and I know how to do it. I just need some time and I know that other teachers want that. And with all liberatory struggles, we need to understand that we are not working.

01:04:54:03 - 01:05:25:24

Trina Allen

For now, boys. We have to harm reduce in the now, right, Because it can't be on the back of our own children. But to know that we are creating a world in which that loves them better is important. All of those kids in the class that sees what a truly universal design lesson is are benefited right, whether they're disabled or neurotypical or not.

01:05:26:01 - 01:05:37:10

Trina Allen

I think that that is happening. It's just not happening fast enough and it's not happening in every classroom. It depends on the teacher. The teacher. It depends on the there needs to be a good teacher herself.

01:05:37:12 - 01:05:40:05

Erin Croyle

yeah, absolutely. And that doesn't exist everywhere.

01:05:40:09 - 01:05:48:10

Trina Allen

No. And in most places it doesn't. And most places pull out of teaching is what they're just talking about. Reasons for it. They say, Coach Jane, you're talking about racism.

01:05:48:12 - 01:05:57:10

Erin Croyle

And what in fact, I think I think briefly, I think it's important because I believe that there are going to be people listening who don't even know what a co teaching model is. Do you want to explain that?

01:05:57:15 - 01:06:47:11

Trina Allen

Yes. Okay. You're right. Okay. So there are multiple ways in which co teaching can look well we talk about co teaching is just like term is meaningless unless we're talking about the individual place in which it's practice. When I say co teaching and I actually mean it as opposed to placement, I mean a classroom with two teachers who create the lessons together who are based off of whatever it is that you're trying to teach, whether it be art or history or math or whatever, so that you are creating it together in a universal design, meaning that every standard from pre-K to 12th grade So you're going to have some kids that go are reading at

01:06:47:11 - 01:07:32:01

Trina Allen

the 12th grade level, you better hit them right? You are making the instruction to meet an understanding at each space. Right? And that I expected outcomes are somewhere on that distribution and you don't pick which one is right. You just portfolio out there where that kid is right and you teach them. The next thing we can talk about seventh grade standards and we can say, yes, this is where we're hoping that kids are at with the understanding that not everyone's going to be at that place and with the understanding that some kids might be in ninth grade and some kids might be a fifth grade.

01:07:32:04 - 01:07:51:01

Trina Allen

And that is fine for the kids at fifth grade, we're looking at the sixth grade standards for the kids. At ninth grade, we're looking at the 10th grade standards. So we're moving them where they want to go. And also based on their personal needs, let's say they really hate math and they're just getting through it. But my God, they love English.

01:07:51:01 - 01:08:23:13

Trina Allen

So, you know, let's let's push them a little harder on that. Let's show them all this wealth of information that they're very interested. It's individualized based both on where they're at in that particular subject and also personal understanding and ways in which they learn. And it also needs to be, if it's a student who is not speaking and needs to be completely accessible with their AC, and it needs to be provided in multiple output ways, everything needs to be using the technology assistance that they need and have, and it needs to be titrated to their individual.

01:08:23:13 - 01:08:57:07

Trina Allen

And that is a big ask for Koti to write. That's just one lesson and I think I've said a lot. So is it doable in every time and every way? If you're teaching five different periods and you have 100 kids and no, it's really, really hard to do that, especially when you're often not giving a co teacher or when people misunderstand the model and think that the co teacher is to adapt the work, that there is an expected work.

01:08:57:09 - 01:09:24:02

Trina Allen

And it's this narrow standard that you're teaching for the class and then everything else is an adaptation you make, you do with your kids that is not co teaching, that is placement in a generic classroom. It needs to be the curriculum needs to be created with guidelines at everyone's level. Otherwise kids fall through the cracks, right, right. Or disabled or not.

01:09:24:04 - 01:09:58:14

Trina Allen

And that co teaching model is great. It also, in my opinion, needs to have it can't just be one student that is multiple disabled, has higher support needs in a class that needs to be civil cohorts, right? Because anybody that feels like radically different, unless they have the either care, but if they have a personality that is more sensitive or self-conscious, you know, like anxiety based, they need to feel like they are part of a collective as well, that there's matching in in peers as well.

01:09:58:18 - 01:10:11:23

Trina Allen

Yeah. Need to feel a sense of belonging again. And honestly, the environment needs to change as well. You're talking about folks with sensory needs. The typical classroom is.

01:10:12:00 - 01:10:15:06

Erin Croyle

fluorescent lights and the acoustics.

01:10:15:08 - 01:10:38:16

Trina Allen

It needs to change. We can make modifications that I tried to in my classroom. I get a swing, I put up things and the lights and the fire marshal tells me to take them down, make up, not looking. No, I'm kidding. I get fire safe ones, right? I have the tag and the fire. Right. You can't change walls.

01:10:38:18 - 01:10:46:02

Erin Croyle

Right? If you don't have windows, you can find ways to provide light. If you have windows, you can get shades that make the light not so bright.

01:10:46:04 - 01:10:46:21

Trina Allen

Right?

01:10:46:23 - 01:11:00:03

Erin Croyle

I still remember reading somewhere, you know, a teacher who really decorated the classroom and had all these glittery things. And there was a student in there with sensory issues and the blinking was really just triggering for them.

01:11:00:03 - 01:11:00:11

Trina Allen

Yeah.

01:11:00:17 - 01:11:30:12

Erin Croyle

Like you have to really see the whole classroom. And Trina, before I forget, I just have to say, the way that you talked about my son, I think is so important because students deserve their teachers to see them for who they are. The way that you see my son, that connection and that being able to understand, most people would just see a kid with Down's syndrome behavior issues that don't want to see in school.

01:11:30:14 - 01:11:38:12

Erin Croyle

You get to know your students to know that actually Arlo wants to be successful and feel good. You know that about him.

01:11:38:14 - 01:11:39:02

Trina Allen

my God.

01:11:39:04 - 01:11:40:03

Erin Croyle

how your you're body.

01:11:40:03 - 01:12:12:06

Trina Allen

That anybody that doesn't see that right away has been horribly trained by our society not to see it. It is a paradox. If I had to rely on what my students said to know who they were, I'd be in a world of hurt, you know, like that empathy that like who we are. It's so funny too, because teachers and we spend so much time, like often times graduate and myself to make connections with kids, you know, not congratulating myself, but like, yeah, hey, I made that in with that kid and good.

01:12:12:06 - 01:12:26:01

Trina Allen

And I didn't know how, but realistically, they do it all the time. Do you want to talk about kids who are forced to know the adults around them? Disabled kids, especially non-speaking kids, are the ones to ask.

01:12:26:03 - 01:12:45:17

Erin Croyle

It's interesting. I recently I had someone asked me and this is something that comes up periodically because students with disabilities have such vast needs that sometimes it doesn't feel appropriate. So I think a lot of times parents, especially in younger years or grade school years, sometimes our kids have to use a diaper way later than others.

01:12:45:18 - 01:13:06:01

Trina Allen

my God. Yeah, right. Yeah, 100%. And some people will always need dollars. Some people will always need a bathroom assistance for the rest of their life. And that is okay that they should be in charge of who, when, why, how, and what. And if you want to get on a real rant, talk to me about the specifics of that.

01:13:06:01 - 01:13:38:14

Trina Allen

In a multiple disabled classroom in which no agency is enough. And I when we talk about body fascism, when we talk about eugenics, when you relate to all of the things that people might need, all of the things that people might need in a daily care kind of way, it's important to me the lack of humanity we give folks.

01:13:38:16 - 01:13:46:24

Erin Croyle

I completely agree. I mean, the lack of adult changing tables, rooms that are, you know, accessible, available, available there.

01:13:47:01 - 01:14:04:19

Trina Allen

That there are stairs when people use a wheelchairs and that the primary consideration is to make a space safe for them, that they have to take a janky elevator with an adult who happens to have a key. Yeah Yo, now, like most.

01:14:04:19 - 01:14:10:09

Erin Croyle

People imagine how claustrophobic and trapped that must make students feel.

01:14:10:11 - 01:14:29:19

Trina Allen

I the first year that I taught in the district previous I had a classroom with 15 kids, five of whom used wheelchairs exclusively. And I had myself and one para told me with expectations for that.

01:14:29:21 - 01:14:35:03

Erin Croyle

And then a lot of those situations, these are students. You should have 1 to 1 support.

01:14:35:04 - 01:14:36:02

Trina Allen

Well, they were all supposed to.

01:14:36:06 - 01:14:57:23

Erin Croyle

But they don't. Let me ask you a question then. I think sometimes people who are not involved in disability, who don't understand it, they think that there are some open and closed cases where general education is not appropriate. So is there any clear cut case where, you know.

01:14:57:24 - 01:15:20:17

Trina Allen

And in fact, we're going to talk my favorite. Okay. So I've been a teacher who's taught in this field. I've lost many students. Right. And that is incredibly difficult. But it makes you think and makes you think about every single moment. Right. And honestly, it might make you a little paranoid about some things. It makes you think about every single moment, and that's the benefit of it.

01:15:20:17 - 01:15:42:12

Trina Allen

It gives you perspectives. And I had a student the first year that I taught in this other segregated class, and there was a group of intellectually disabled students, 18 students, many who were multiple disabled, and that was before I had the reverse inclusion program. But there was one student who was incredibly medically fragile. He had he had a birth injury.

01:15:42:12 - 01:16:04:21

Trina Allen

There was parts of his brain that no longer worked, and he had a heart situation in which his head could never go below his heart like, wow, multiple things. Right? And he did have a nurse. And I was worried because he had such a different understanding of the world. And 90% of what we were doing was sensory based.

01:16:04:23 - 01:16:35:15

Trina Allen

Right. And care, support, care, like making sure all of his medical needs were attended, making sure all of the things that he needed done daily were being done. And then for the education piece, we're talking about cause and effect. And so would I be able to support him in such a busy classroom and his parents had to fight with lawyers, fight to get him placed in a segregated classroom at that level versus a care classroom at the county level.

01:16:35:16 - 01:16:36:14

Erin Croyle

Wow.

01:16:36:16 - 01:16:58:13

Trina Allen

They had a fight. I wish I'm not I'm not going to say who they are, but without asking permission first. But in any case, they did. And they're amazing advocates and I love them. He used a wheelchair that was specifically made for him, and he liked to spend in that wheelchair. And then he would smile very slowly. One side of his mouth would smile.

01:16:58:15 - 01:17:19:06

Trina Allen

And then if he did that, he had a dolphin. He liked the sound of that made a squeak noise. Then he would stick out his tongue and he would smile. So in my classroom, in order to ingratiate him into every single activity, the kids get this idea that he has to spin, of course, to to join the court, and then we need to do the dolphin.

01:17:19:07 - 01:17:39:13

Trina Allen

And so every single transition, it was like this thing of who gets to spin him for cooking, for making a cake. He was going to put the mixer in his hands. He can feel the vibration. Who gets to do it? It was like the joy of the entire classroom of who gets to participate with him. And he loved it because you got all this sensory input.

01:17:39:15 - 01:18:05:13

Trina Allen

And by the end of the year, it wasn't like I was having to integrate him into anything the class already did him, and he did pass away that summer and it was he graduated though. yeah, right. Like and so he, he passed away that summer and I, I was like, how am I going to leave my class with options?

01:18:05:15 - 01:18:11:06

Trina Allen

Like I went from not knowing how to integration to not knowing how to run a class without him.

01:18:11:08 - 01:18:11:22

Erin Croyle

Right.

01:18:12:02 - 01:18:49:00

Trina Allen

Because multiple levels of ability in a space make that space inclusive. Now, unless that person themselves either directly or indirectly tell you they don't want to be there. Right. Like personality type matters too. There might have been some kids like a don't touch me with that, you know? Right. I wasn't him, but I think it's really, really important that we take personality and perspective and desire involved in all of these things.

01:18:49:00 - 01:19:09:14

Trina Allen

That's the primary. You know, listen, that deep listening, that understanding of allowing people to be themselves really means that. But also don't let it be because the environment sucks. Don't let it be. They don't want to be there because environment sucks, right? Like, don't let it be that. And if it is that, figure out a way your plan and your map for fixing it.

01:19:09:16 - 01:19:16:15

Trina Allen

But no, there's no one. What person needs to be segregated from a family at school? So who needs to be institutionalized then?

01:19:16:17 - 01:19:45:04

Erin Croyle

That is such a powerful story and it speaks directly to my next question, which is how do we shift mindsets on a more global level? Because one of the things we encountered time and time again are parents who do not want their non-disabled children to share classrooms with students who have intellectual developmental disabilities or behavioral challenges or anything like that.

01:19:45:06 - 01:20:04:09

Erin Croyle

How do we shift that mindset and show the benefits of I mean, you and I know how important it is because we know in our lives how how much it's it's changed for the better by being around people with disabilities and how much a better society. So how do we help foster that mindset shift?

01:20:04:11 - 01:20:26:16

Trina Allen

I like that you put it like that. I part of me, you know, The fighter in me is instinctively like what? To demonize and be like, Well, and that's why I don't tolerate hate speech. And that is why, you know, and of course, that doesn't help, right? They were raised in a society that is based on productivity. They were raised in an able society.

01:20:26:16 - 01:20:58:14

Trina Allen

So of course, they had these viewpoints. The truth of the matter is, until we get to a place in which my liberation is bound up, in your liberation, truly intersectional, there's nothing to say to those people when those people are wanting to be bullies and to be mean. However, not every single one of them is. So many of them are misunderstood or just raised in a society in which they don't know anything about disability and they are just scared.

01:20:58:20 - 01:21:26:17

Trina Allen

So the main shifts that they have to make is based on humanity and treating people like a valuable and not expendable or disposable going forward. From there, what I do think and what I work with parents and I do to expose those, I'm not going to demonize them. I'm going to work in my my heart, but in my mind and in my understanding of the world, I'm not going to demonize them.

01:21:26:17 - 01:21:53:23

Trina Allen

I'm going to try to figure out ways in which I can help them move towards where what we need. And in that what that looks like is telling them two things or several things, really. But one of the things is that disability affects us all at any time any of us can become disabled. And the reality is the longer we live, the more likely that's to happen.

01:21:54:00 - 01:22:16:13

Trina Allen

Your child may have a disabled child. Are you giving them the skills that they need in order to help them? Your child may work with disabled people. Do they know how to interact? What are they going to do in the future? And sort of demystifying the idea that disability affects this one person this one time and it's like your entire life.

01:22:16:15 - 01:22:50:07

Trina Allen

The longer you live, the more likely you are to be disabled, first of all. And secondly, and most importantly, I think, is that children do not learn in a linear fashion. Well, we might want curriculum to be systemic and built upon the last lesson for sure. I very much believe that children learn in so many multiple ways and having more typical abilities demonstrated having multiple access.

01:22:50:07 - 01:23:14:23

Trina Allen

And we're not just talking about, you know, an easier task. It might be a harder task, right? We're talking about all that universal design that allows every child to move to the next thing. How could that possibly harm your child? Do you think that because your child is in seventh grade or first grade or fourth grade, that that's all they are capable?

01:23:14:23 - 01:23:40:18

Trina Allen

Or are you making your child that way? Right. Because they might be at third grade in art or we're just making these numbers up. The education bill hasn't been that low, you know, but around that level, for us to really have a deep understanding of it, you're limiting your child if they're just getting this one little narrow understanding of what lessons and what standards they're supposed to be working on, you're limiting your child.

01:23:40:20 - 01:24:10:08

Trina Allen

Give them expands, expand that world, allow them to learn more and critically think right. It is more complicated to make a multi ability classroom. It provides so much nuanced instruction for your family. Your child gets to learn all these different things, all these different levels, and they also learn how to be a good human. They also learn how to love themselves.

01:24:10:10 - 01:24:37:03

Trina Allen

Because I think that one of the saddest things is, especially for the non obvious disabilities, is that for those of us who are in fact there are divergent, we learn real quick that we are not what is expected. And you don't know. You think your child, you think your child is neurotypical. You don't know that they'll let you know later on.

01:24:37:05 - 01:25:01:09

Trina Allen

And I think that having a welcoming, loving environment in which all aspects of children are welcomed and focused on is never going to hurt a kid. It's never going to hurt a kid. And quite frankly, as a teacher who's in it 24/7, there are so many kids who are not on my caseload that need me there that I'm spending a lot of time with.

01:25:01:09 - 01:25:27:03

Trina Allen

You know, like it's not like it's just a couple. Right? And it might be the very parents that are like, I just wish you were focused on teaching and blah, blah, blah. And I'm like, I see your kid more than right. You don't know. You're not in the classroom, you don't know. But I do know that everything that I'm going to offer is going to be targeted to whatever those kids need.

01:25:27:05 - 01:25:29:11

Trina Allen

And you should be grateful for that great relief.

01:25:29:13 - 01:26:01:15

Erin Croyle

Yeah. I think that, you know, in my experience as an advocate, as a parent, as someone who tries to be as involved as possible, I just can't stress enough that one special education is a service, not a place. You know, we cannot get rid of it. Maybe the name is flawed, but all students benefit from it. You know, I think back to some of the accommodations I request for my son, like a beanbag chair or something like that because of low muscle tone or needing a break in a corner.

01:26:01:17 - 01:26:06:01

Erin Croyle

I can't think of a student who does not need a break in a corner during the day.

01:26:06:01 - 01:26:30:05

Trina Allen

Thank you. And God, we can talk about this like so. One of the one of the challenges of working in a district previously, not currently, but my previous district, It often felt like I was frustrated in a lot of ways, like I could get this if I didn't do this. That sort of working within segregated system makes makes you fight.

01:26:30:05 - 01:26:54:12

Trina Allen

Certain battles are street battles, you know. Right. So you use what you have. So if you have lawyered up parents and this sounds manipulative that is all get out and I don't mean this but if you have lawyered up parents and they are my kids getting what my kids get and they have that behind them and you think I'm not going to benefit the kids in my class who don't have that privilege?

01:26:54:14 - 01:26:55:07

Erin Croyle

No.

01:26:55:08 - 01:27:16:03

Trina Allen

Are you kidding me? I'm going to exploit the heck out of it. And I cannot tell you the accommodations that I ended up getting for kids that didn't have that in their IEP because I had a kid that did right. I wanted music therapy for this one kid so bad I can taste it, needed it wanted it, couldn't get it.

01:27:16:05 - 01:27:27:10

Trina Allen

The other parent would like. Some hardcore advocate gets it and says, you know, I'd like to have it for the whole class. Gets it for the whole class.

01:27:27:12 - 01:27:29:11

Erin Croyle

How I want to know how.

01:27:29:13 - 01:27:53:16

Trina Allen

Tell me that parent is super lawyered up in the district in this particular situation. The districts, did it provide faith and there was a settlement and you do what you will with that reason. Yeah, but for an entire year, actually longer than that, until he graduated, we did this thing where he got to lead because he needed leadership skills.

01:27:53:16 - 01:28:13:19

Trina Allen

And so we wrote that in for the music therapy. So she did music therapy as a whole group that he helped lead it. It was so great. And then everybody got to do it right. And he had leadership skills, you know, And then like, it was so pretty. It was just what any to look like It was so it was so pretty.

01:28:13:21 - 01:28:33:12

Trina Allen

And I could never, as a teacher have gotten music therapy for this particular kid that I wanted. I want to for everybody. But, you know, there are some kids are like, do what he does with those keyboards. I don't know. You know, So it's like an and again, it's like looking for that deep ways of communication, you know.

01:28:33:14 - 01:28:57:15

Erin Croyle

Well, it's interesting because one of my questions was going to be what can we do as advocates to ensure that what we're doing for our own children are helping others whose caregivers aren't able to advocate at the same level, don't have the resources? You know, you see it every day. And I know that every time I go in there for anything I advocate for for my son, unless it's something super specific.

01:28:57:21 - 01:29:09:04

Erin Croyle

Yeah, I make sure I say that. Listen, this is not just for him. I see this as a need for all students. How can we make access to extracurriculars easier? How can we do this? How can we do that?

01:29:09:06 - 01:29:35:17

Trina Allen

So systemic change is where that ultimately lies. I think personality can do a lot, but then when that person is gone, then it's like falls apart, right? So systemic changes where it needs to happen. However, that being said, you letting teachers and letting service providers know that your intent isn't just for your child, your intent is to push for all kids.

01:29:35:17 - 01:29:58:14

Trina Allen

Inclusion, I think, goes a long way in letting them know how safe they feel with you and what they can say to you and what you can ask for based on their recommendations. There was a lot of side conversations that I had with parents and in my boss and saying, Hey, these things, you know, these things. I think that that's the first thing you can do and also know your position ality and privilege.

01:29:58:20 - 01:30:32:07

Trina Allen

Explore what it might look like being advocate. If you've got legal skills man, share that. I have one parent and I think is a great example who went through the conservatorship process. And again I know I don't love the conservatorship process and have all kinds of reservations about taking control of someone else's life. And in the idea of medical need for a child who is non speaking, it can be terrifying when it's 2020 and there's no vents available.

01:30:32:13 - 01:30:49:19

Trina Allen

You know what I mean? Like, yeah, right. There's some real world things in which we've got to navigate harm reduction. And she always said, like, I went through this process and I did it myself. It would have been really, really expensive. But I did it and I have backup so I can give it to everybody. As a teacher, you got curriculum, Share it.

01:30:49:23 - 01:31:19:04

Trina Allen

Yeah. Don't keep stuff. Intellectual property, I guess. And student need though, comes first. I think as a parent, if you've got skills and you can replicate it, do it. What you're doing right now. Podcast Letting other people tap in and giving them an open idea of cool teaching could look like inclusion, can look like being a futurist in that you don't allow the systemic criminal to stop you from dreaming of what you know it can be and keeping your eye on the prize.

01:31:19:04 - 01:31:41:08

Trina Allen

What you reduced all the way through it is fine. Those are the things that we need to do. But I do really think it's literally telling, saying what you just said to the providers you work with and saying like, my intention here is first and foremost my child, of course. But first and foremost for my child for me means that every child.

01:31:41:10 - 01:31:41:23

Erin Croyle

Right?

01:31:42:01 - 01:32:06:01

Trina Allen

I do. What do you need to. Right. Question. Right. That's what I try to tell folks. I work with. And also just those things that benefit the whole class, to benefit the whole school that like you said, you taking on extracurriculars. My God, I cannot tell you until I had the reverse inclusion program how painful it was to all of the high school events.

01:32:06:03 - 01:32:34:02

Trina Allen

I had to go or they cut it. And while I'm down to go, let me tell you, it's a lot. Yeah, right. What? I have my own. My own child can be every Friday. You want to go to a football game? I'm sorry. I can't take you every Friday. Right. And then also, like going to the dance when I was 25, it was one thing, but I'm rapidly approaching 50 in a couple of years.

01:32:34:02 - 01:32:42:20

Trina Allen

It's not a thing anymore. I'm not relevant. Like you don't want to hang with me. I didn't have all the kids that knew them and so they would just go. But it wasn't fun.

01:32:42:22 - 01:32:44:17

Erin Croyle

Right?

01:32:44:19 - 01:32:55:07

Trina Allen

That's not inclusion. The fight for extra curriculars and all those things is equally as important as it is for academics.

01:32:55:09 - 01:33:22:12

Erin Croyle

Absolutely. And I think having a strong IEP that can then be carried on to school sponsored activities is critical because of all of the components. And I think to you know, I want to go back to the mindset shift when we're thinking about parents. And I think that inclusion I so often and especially lately, there's just this push about how inclusion is expensive.

01:33:22:14 - 01:33:51:00

Erin Croyle

You know, someone shared a blog with me where they cited the flaws of inclusion in and one of the examples they use was the first grader shooting the teacher in Virginia a couple of years ago. As if inclusions to blame for that, It's not you know, inclusion is critical for us to advance as a society. And so I.

01:33:51:06 - 01:33:52:20

Trina Allen

Got out of that child's hands.

01:33:52:22 - 01:33:58:05

Erin Croyle

Right. Right. It doesn't it's not because that child is in school.

01:33:58:05 - 01:34:00:09

Trina Allen

It's it's because that child didn't get what they need.

01:34:00:10 - 01:34:02:01

Erin Croyle

It is because.

01:34:02:03 - 01:34:17:02

Trina Allen

The child didn't get what they needed. The child would have been in school. Unless you think that they should stay at home with their parents because we go back to that. We can go back to segregation by race. We can go back to segregation by ability. We can go back to segregation if you want to live in that world.

01:34:17:03 - 01:34:29:20

Trina Allen

And I don't know, like the answer to that child is that child needed a lot. That child needed a lot. And it's not the inclusion teacher that.

01:34:29:22 - 01:34:33:10

Erin Croyle

Just the school. Everything else is that child's right.

01:34:33:13 - 01:34:53:21

Trina Allen

It's everything in that child's life. And let's talk about placement. When kids are getting what they need, that they're in a placement. That's not inclusion. That's not what we're advocating for. So you're just talking nonsense now, because if it wasn't actually inclusion in that child would have been getting the support that they needed both at school and at.

01:34:53:23 - 01:35:06:10

Trina Allen

Yeah, that's just and I forgot the logical fallacy that that's the name of it is. But that's it's a logical fallacy. You're using it as an example, a fear mongering example that has nothing to do with anything real.

01:35:06:12 - 01:35:29:07

Erin Croyle

Well, let's go broader. That's a very specific example of something kind of extreme. But in a similar vein, the students who throw desks and mice are not all these kids even have IEPs, right? They get it cited as an inclusion issue, but it's really just a kid. So you have kids that throw dust, that bite, that whatever. And so you have parents saying, I inclusion isn't working.

01:35:29:07 - 01:35:33:22

Erin Croyle

Okay. So what is what is your counter to that? Who is someone deeply involved?

01:35:33:24 - 01:35:57:07

Trina Allen

my counter to that is that I don't believe in the school to prison pipeline. So what happens to those children who throw desks? First off, those children who throw dust are deeply traumatized. There is no neuron type that throws dust. That's a thing. There is a child in trauma who is responding in a manner that fits their current situation right?

01:35:57:09 - 01:36:24:17

Trina Allen

So there is no neural type that bites. That's not a thing that is a person in distress. So we can just institutionalize everybody who doesn't behave. We'll have lots of prisons. Now, that's not the world in which I want to live. That child goes somewhere. Where do they go? Do they go to a classroom with everybody who is in that same level of trauma?

01:36:24:19 - 01:36:45:03

Trina Allen

Because that works. Ten kids with that same level of trauma in a classroom segregated by themselves with no outside intervention and no sense of inclusion or belonging. No, that doesn't work. That's not what that child needs. And we've already failed that child. Let's talk about it. By the time they're throwing does so, by the time they're fighting something that's already happened, there's already been a breakdown.

01:36:45:05 - 01:37:10:21

Trina Allen

And so it's about one repairing that. But also, your child is still going to live in the world where there are people who throw desks, regardless of whether they see them or not. And they're still going to be responsible for them collectively as a culture. Right. We're not going to deal with a culture that is radically supremacist. That child wasn't supported in the moment.

01:37:11:01 - 01:37:45:15

Trina Allen

Let's figure out how to do that safely. I do believe your child's safety. I do believe that every child safety, not just a job. And I think that safety looks like figuring out situations before because it didn't go from nothing to buy it. Right. Okay. It didn't go from nothing to fighting. So figuring that out first and making sure that those environments are appropriate and providing all the support that that child needs, first off, second off repair, what does that look like for a child with say, who?

01:37:45:17 - 01:38:11:12

Trina Allen

Let's say something less inviting. Let's say screamed at the teacher and walked out of the room and slammed the door. So they get suspended. They go home next day in class. It's easy because they're not quote there. What did that do for anyone? They're literally nothing. What did it do, though, when there's repair between the child and the teacher and the child and the class, they learn how to communicate their needs.

01:38:11:12 - 01:38:34:21

Trina Allen

They learn how to communicate their wants. They learn how to communicate their frustrations in more appropriately, others. The ways in which that we can have can set. They learn how to repair when they harm, right? They learn how to take accountability for that in the classroom. And the teacher learns how to take accountability for what went wrong in the moment beforehand to this is what your child needs.

01:38:34:23 - 01:38:49:06

Trina Allen

This is what every single person needs. Think about your relationships as a husband or as a partner or as a mom. For all the ways in which we friend we relate with each other. How many times did you not know how to repair a relationship?

01:38:49:08 - 01:38:50:10

Erin Croyle

Yeah.

01:38:50:12 - 01:39:25:09

Trina Allen

How many times did you not know how to fix the harm that happened? This is where our real lives are found. And again, throwing death and biting. And that sucks. It sucks. It's scary. It's hard. I've certainly done it multiple lives, dealt with that. But the harm, the real harm happens after the fact. The real harm happens in the seclusion and exclusion of those people, because we learned that when we for we can't fix and we learned that when we are harmed, there is no repair, there is no comfort.

01:39:25:11 - 01:39:52:08

Trina Allen

Right. Because what did those kids in that classroom need when the bad thing happened? We don't know. We don't care. When we talk about the costs of inclusion, we don't talk about the cost to our humanity. If we don't, every single time we exclude somebody, we are losing an opportunity to learn how to treat another human being as valuable and not disposable.

01:39:52:10 - 01:40:15:24

Trina Allen

That doesn't mean that every kid is going to be happy in one particular placement. I am never going to advocate for that. There are people that are like, Yo, I need to be at home. I'm not going to tell you who you are, not going to tell you who you are. I don't want it to be though. I want to be at home because you never understood me.

01:40:16:05 - 01:40:28:02

Trina Allen

Yeah, right. And that's a tricky balance of figuring that out and noodling through that and working through that. But I will say that every single kid deserves that.

01:40:28:04 - 01:41:01:19

Erin Croyle

As an educator, though, tell me this. We keep hearing about more of these sort of disruptions happening more often. And I've heard from educators who've said, I don't know how to handle it or I'm not getting the support to handle it. And it's making it very hard to manage my classroom. So as an educator who's in it, who advocates for all of it, what can we do to fix that part of it?

01:41:01:21 - 01:41:26:05

Trina Allen

gosh, those things are real. I mean, I jokingly said, if you're a teacher and you can't take a punch, I don't know what you can do. And that's not fair. Yeah, you shouldn't expect, right? This is not a society. But I do think that support one another. Being loving and kind is important. So when harm happens surrounding it, why do we have to have systems and processes for it?

01:41:26:05 - 01:41:48:23

Trina Allen

So draconian measures like suspensions and in-house suspensions at lunch detention and all these, it would do nothing. We do nothing when it's trauma, if it's just naughtiness, I guess because they don't want the bad thing, they'll do the other thing because they have a choice. But when it's trauma, they don't have a choice. It just doesn't work. So then it ends up being the same five kids, right?

01:41:49:00 - 01:42:10:09

Trina Allen

And usually that's based on race and ability. It always goes back to that. Right. So the draconian things don't work. What do we do? We have systems of repair. We have restorative circles that built into our day. We have ways in which we can work together. And we don't wait.

01:42:10:11 - 01:42:11:10

Erin Croyle

Right?

01:42:11:12 - 01:42:34:08

Trina Allen

We don't wait till that desk is through. Right? We listen to when a kid has an IEP, we actually follow it first off. And if it doesn't have IEP and I see that they're upset, I'm going to deal with that. I'm going to deal with that and not say it's not my job. And the dealing with it needs to be explicitly taught.

01:42:34:10 - 01:42:59:23

Trina Allen

Listening to children, having time to listen to children, having enough counselors, right. Having repair circles, really addressing and digging in what that need looks like and having a culture of accountability and that like you don't just ignore meanness when a child is fearful. We're really to talk about this. It is not just going to be a contract between you, the kid, the parent and the kid that was bullied.

01:43:00:04 - 01:43:27:03

Trina Allen

This is not what we're doing. We are doing it. We're opening it up and we are being honest about where we are. And I know that teachers are overwhelmed. I have been overwhelmed. But I also feel like the 99% tool belt that I could give any teacher is rapport. You will never teach content until you have rapport. You will never teach content until you have their trust.

01:43:27:05 - 01:43:41:21

Trina Allen

You will never gain their trust until you have good rapport with them, until you have shown them time and time again. You are a safe person. And I think that that should be the focus of a lot of our education rather than some of the hoops that we go through.

01:43:41:23 - 01:44:05:12

Erin Croyle

Yeah, and I really want to add thinking about the mindset shift and thinking about seeing students at any age and I mentioned this before I speak to college students about inclusion and inclusive practices and universal design for living and learning. And one of the things I mentioned is you know, look around you and think about what you need in your day to day.

01:44:05:12 - 01:44:18:15

Erin Croyle

Think about conformity and think about what we try to shut out of our lives. Like you mentioned with Ada, you know, it's like something is wrong with stimming when stimming is something that actually brings comfort to people.

01:44:18:17 - 01:44:20:12

Trina Allen

We talk about that like.

01:44:20:14 - 01:44:20:19

Erin Croyle

You.

01:44:20:19 - 01:44:57:13

Trina Allen

Talk about the fact that I had a student many, many years ago who did this particular stem, and she did a lot. And I do it now usually when I'm alone. But like it is so stress reducing. And I never I was never a teacher that said that stemming all of the things that I was dealing with, especially in that placement like that was not one of them, but the pure joy I would have been stealing from him one And then also like, thank you, I want to give him some like that's 20 years later because thank God I had that at my worst moments.

01:44:57:15 - 01:44:58:02

Erin Croyle

Right?

01:44:58:03 - 01:45:00:16

Trina Allen

Yeah. No, it's just like, not.

01:45:00:16 - 01:45:28:06

Erin Croyle

Always exist in the same ethos, you know? I know when I was in school, like I needed to click something or. Yeah. And so for students taking a test, if the clicking a noise, you bring in earplugs. We need to know that the world is not going to be our perfect little conformed bubble. So instead of making someone who has to make noise, be quiet, let's all adapt to help us all be who we are in our own.

01:45:28:08 - 01:45:40:00

Trina Allen

Let's teach kids to know that about themselves. So like, I really do need it quiet. So let me be the here. I'm going to advocate that I have a I, I don't I even I'm going to advocate that I have a quiet testing space.

01:45:40:05 - 01:45:41:12

Erin Croyle

5044.

01:45:41:14 - 01:46:18:02

Trina Allen

504 Thank you. And I'm so mad. That even has to be about why can't I say hi? I really struggle with it when it's loud in here. I go in the hallway. Okay. Yeah. So whatever. Like, it's not a problem. We need to think about trusting children, first off. Yeah, Trusting children. And also when you can say yes, do when you can say yes, do When you have to say no, mean it When it's something that is really not okay.

01:46:18:04 - 01:46:41:15

Trina Allen

Let that be truly not okay and address it. Don't just walk over it when real harm happens, when real bullying happens, when real abuse happens, really acknowledge it. Not just in the moment. Jump in three weeks later. Yeah, Have time for that deep repair. Transformative. Let's change the culture in which this is created is really what we're talking about.

01:46:41:15 - 01:47:05:18

Trina Allen

And then being allowed for those accommodations, trusting kids to know what they are and teaching them all the options for that. Right? Letting it be like a menu, like I really do better with this, this, this. We all learn that, especially if we make it past high school and go to college. All you hear from college students is like, I need the music on or I can only study in black ness.

01:47:05:24 - 01:47:18:24

Trina Allen

I need to be dark with my just my computer, you know, whatever it may be. You learn all that and it's only the privileged folks that end up there right. Which are all going to use that in their brain.

01:47:19:01 - 01:47:44:06

Erin Croyle

Yeah, it's interesting. I remind myself and I remind my family and whomever to write, especially with neurodiversity and realizing the the quirks that come with it that sometimes you have to look at intentions, don't look at what has happened, look at the intentions, at the intentions are well-meaning, then give people grace. And that applies to students too.

01:47:44:12 - 01:48:10:17

Trina Allen

I totally agree. I will always talk about impact, right? I will always talk about impact. Because even if you didn't mean to hurt somebody, you did it. It matters. And intention matters to absolutely. Intention matters to when someone is just their stem is to clap the table. Really loudly and I can't talk over it. Yeah, I'm probably going to have to.

01:48:10:20 - 01:48:13:10

Trina Allen

We're going to have to negotiate the system in a.

01:48:13:10 - 01:48:14:24

Erin Croyle

Pillow forum debate. Yes.

01:48:15:03 - 01:48:49:01

Trina Allen

Nothing. Right. Exactly. We're going to figure out a way to, you know, exist together yet exist together. And if the intention is to be irritating, I'm going to want to know what both of those situations, the why matters and the why informs the how. And it should always be that. And neither of those kids, the kid that's banging on the desk to disrupt and the kids are banging on the desk because it does really go to the base of their hand are both valuable members of society and need to know how to get those things out.

01:48:49:02 - 01:49:10:04

Trina Allen

And when. The intention on your end is to just control the situation rather than meet whatever the underlying needs are, You lost the loss and you're going to be a bad teacher. You know that. You know, bad teachers always talk about that. You just approach it. You know.

01:49:10:10 - 01:49:17:02

Erin Croyle

I think we all go through phases of that in our lives regardless that teachers or whoever. That's hard.

01:49:17:04 - 01:49:18:16

Trina Allen

But yeah.

01:49:18:18 - 01:49:37:11

Erin Croyle

Yeah, I mean, we've been talking forever and I could honestly talk to you for hours more and maybe we will one day, but I want to ask one more question. Hopefully just one more. Trina If you could create inclusive public schools with a magic wand, what would you do to make that happen?

01:49:37:13 - 01:50:16:03

Trina Allen

Well, on the macro level, I would end imperialism, white supremacy on the macro level, I would end genocide. On the macro level, I would teach people that humans are not disposable in any way. On the macro level, all those things are true and that is where I need to stay. If I want to stay in this field and I do.

01:50:16:05 - 01:50:56:21

Trina Allen

So I got to keep my mind on the future. I got to keep my mind on that. The next thing, the more immediate is that we need we need to fund schools. We need to have less obsession with a standard and more support provided. Because when kids are dealing with a housing crisis, when kids are dealing with systemic racism, when kids are dealing with the fact that their parents don't have money or time to even do basic things.

01:50:56:21 - 01:51:28:02

Trina Allen

So this school is going to be the place where all of those things happen. The school is now more of a mental health triage than it is just a place of academic understanding. When those things are true, we need to keep our eyes on the macro level of like, we're not going to fix this in this moment, but if we are looking forward to those things, we're looking forward to people actually mattering for inclusion to be real and by extension, people of all abilities, disabilities.

01:51:28:04 - 01:51:59:07

Trina Allen

I really believe that focusing on meeting each support need regardless of disability, is super important, that that rapport and humanity comes before content and. Once that is established, content becomes interesting and fun because you learn who they are and they learn who you are and they want to learn from you. They want they want this information that 10 minutes ago they were like, That's stupid.

01:51:59:09 - 01:52:17:14

Trina Allen

I hate math, or, you know, whatever it is, I just very much feel that that needs to happen. And teaching needs to happen. There cannot be the co teaching model of special ed teachers being the support. It can't be that curriculum is to be created. There needs to be time for that. There needs to be time for repair.

01:52:17:16 - 01:52:38:07

Trina Allen

There needs to be time to assess what you're doing. And is it working for the kids that don't have IEPs that they require a lot of support, understanding that they're your children to write them for the kids with IEPs that need a lot of support, that they're not getting understanding. It's hard that I don't know what to do about that.

01:52:38:09 - 01:52:51:13

Trina Allen

That's really hard. That is the piece that kills me when I have a kid that has one that has the support that they need, that they're not getting at, that is still out about it, I guess.

01:52:51:15 - 01:52:54:00

Erin Croyle

Because there's poorly trained staff and.

01:52:54:02 - 01:52:57:05

Trina Allen

Or there's no staff, they're relegated and they don't have it.

01:52:57:07 - 01:52:59:17

Erin Croyle

Yeah, yeah.

01:52:59:19 - 01:53:25:24

Trina Allen

Pay teachers better. Sorry. I mean, that's true. That's true. Here is my work staff, my God, if you want to talk about able ism, the people who were closest with the kids experience it as a bystander because they they get ignored, thrown around as if they don't matter and they directly impact our students.

01:53:26:01 - 01:53:43:17

Erin Croyle

What you mentioned is a philosophy focal level I think on on on an actual like policy level and in action level, what I hear is and what I get personally experience based, you know, to to achieve what you're saying. We need to pay the Paris support.

01:53:43:19 - 01:53:44:08

Trina Allen

Yes.

01:53:44:08 - 01:53:45:16

Erin Croyle

Living wage.

01:53:45:18 - 01:54:08:21

Trina Allen

Paris need to be the living wage. Yes. We need to value that. So it's access. It's always about access, right? In my last job, they couldn't come to any of the meetings. And as a that was teaching a segregated class because transportation wouldn't change. I couldn't go to the staff meetings of my school and they could never they can never go.

01:54:09:00 - 01:54:33:00

Trina Allen

In fact, in the 14 years that I worked and the same school, same classroom, I the same para Mindi and I know she does not care. She 100% wants me to say her. India's fabulous Mindy been there longer than any admin. Multiple admins who had been there for several years didn't know her name. You see her, but you don't because you don't come to my classroom.

01:54:33:00 - 01:54:47:20

Trina Allen

Second But also she has dedicated her life for a pittance. She has dedicated her life. I could not 300 not do my job. Right? Right. She is my co teacher.

01:54:47:22 - 01:54:48:16

Erin Croyle

Right?

01:54:48:18 - 01:55:12:19

Trina Allen

She is my co teacher and she is treated like that. But if you want to ask anybody on campus about someone's IEP, you're going to ask her, right? Because she. No, she implements it when I am not there. She teaches my because, you know, that's I don't know any I mean, no shade. It's hard. But God blesses us, you know, like that's not an easy job.

01:55:12:21 - 01:55:15:13

Trina Allen

But like, they don't know. They don't know. They don't know.

01:55:15:13 - 01:55:17:11

Erin Croyle

Possibly for a sub to know. Yeah, right.

01:55:17:12 - 01:55:46:17

Trina Allen

It's impossible. What is your mole having a seizure or Sally. Shouldn't it have apples. Because that you know, all the fate of of things. That's what parents know and the ways in which they have no support and no agency directly shows you how close they are to the student. It's like it's able is and by extension, the farther away from disability you are, the more power you get.

01:55:46:22 - 01:56:02:20

Erin Croyle

I've never thought about it that way, but what I do see is that a really good pair of one on one to ESP whatever you call. Yeah. Makes all the difference.

01:56:02:22 - 01:56:05:01

Trina Allen

01:56:05:03 - 01:56:06:18

Erin Croyle

All the difference.

01:56:06:20 - 01:56:07:04

Trina Allen

Yes.

01:56:07:08 - 01:56:26:16

Erin Croyle

And so I can't help but think if we were to be able to train and hire and pay folks what they're worth and how we value that, it would have the biggest impact.

01:56:26:18 - 01:56:49:11

Trina Allen

my God, Yes. You have no idea that that would be every thing. When I worked at that first job, I had a supervisor who talked about wanting to change the whole dynamic of the environment and he had this great idea. He was like, We'll teach modules, we'll teach these big modules on trainings and people, whatever module they are on.

01:56:49:11 - 01:57:14:24

Trina Allen

So they'll get paid at 42. There's some like interactive learning, right? Like some textbook type setting. But then in order to pass module, you would have to teach it to somebody else in your department. That's part of it. You would have to co train somebody and then you pass that module and now they are able to start the module that you just pat me.

01:57:15:01 - 01:57:36:22

Trina Allen

So it's like this rapidly expanding, you're benefited by someone else. Next to you doing better, of course. And then multiple people learn, right? So even the people that don't want to move up the modules, they still learn because they're helping their buddy out. It was so smart. I was like, Why can't we do that? And also, no shame that my master's program was trash.

01:57:36:24 - 01:57:54:15

Trina Allen

I didn't learn to be a teacher in a classroom, right? But I listened in. I learned to be a teacher in a classroom. I taught it by seeing other really good teachers. A lot of them were peer educators or whatever that lingo is. There were support staff and they were amazing. And I learned to be a teacher through them.

01:57:54:17 - 01:58:11:14

Trina Allen

And my students guide my biggest teachers of students. Always, always that that apprenticeship. Why could that be a thing? Why are teachers who are doing good or making a huge difference? Why is it so isolated? Let's capitalize on that sense of people over what job.

01:58:11:16 - 01:58:12:00

Erin Croyle

Right?

01:58:12:02 - 01:58:17:14

Trina Allen

Apprenticeship. Well, if you have amazing career educator having trained some folks.

01:58:17:16 - 01:58:37:23

Erin Croyle

I think it's funny. I love that you said this because I feel like this interview is never going to end and I'm okay with that. But I love that you said that because as someone who studied journalism and communications, I learned everything as an intern in a newsroom.

01:58:38:00 - 01:58:38:07

Trina Allen

Know, you.

01:58:38:07 - 01:59:08:19

Erin Croyle

Go And so here we are talking about public schools and how important education is. But also, I think it's really important to acknowledge that you can have a doctorate in whatever. That's great, but that's a level of privilege and you're not actually learning truly what is happening unless you're out there doing the work. The best to the best people that I've seen my son work with are the ones that are out there doing the work every day.

01:59:08:19 - 01:59:15:22

Erin Croyle

It's not about a master's or a doctorate. It's about your passion and the work you're doing and what you're learning in the field.

01:59:15:24 - 01:59:18:19

Trina Allen

100% is about that is educational, elitist.

01:59:18:21 - 01:59:19:24

Erin Croyle

Academic, ivory.

01:59:19:24 - 01:59:44:13

Trina Allen

Tower. It's just it's nonsense. And while I love debate theory, I can do that all day long. I love talking about six essential things and big macro ideas and whatever. I love school the way for that. For the discussion aspect alone, I can have all of that. I can understand all the different theories of how education developed and ways in which to talk to kids and what ideologies come out of what theories and what they're based on.

01:59:44:13 - 01:59:58:24

Trina Allen

And I can have all of that and it does nothing to help me when Sally has an accident in class and how to navigate that with her dignity, my own and everyone around us.

01:59:59:01 - 02:00:11:23

Erin Croyle

Right. It does nothing to help you figure out how to talk to someone who has cerebral palsy, who has a very distinct dialect. You really have to get to learn to be able to understand them. But once you do, you can have a really great conversation.

02:00:12:00 - 02:00:25:09

Trina Allen

Thank you. Those things are all valid. Those are valid, but that doesn't make them primary. What is primary is relationship and rapport. How to make yourself a safe space so that learning can happen.

02:00:25:11 - 02:00:26:12

Erin Croyle

Connection.

02:00:26:14 - 02:00:51:10

Trina Allen

Yeah. my God. And not on your own terms. There's so many adults who think that connection has to be on their terms. It's like if you aren't going out of your way to meet where someone is at, when you are in a position of power. And I don't care what any adult says, but little children, we live in a very aged society.

02:00:51:12 - 02:01:10:17

Trina Allen

Children are infantilized in ways in which they don't need to be. In some ways they do, but in ways they don't need to be to be in a position of power, specially a teacher and not attempt to meet a person where they're at. And that connection is my opinion. Abuse of power.

02:01:10:19 - 02:01:33:22

Erin Croyle

Every student. I'm sure you have a different way to connect with them. And so again, I'll go go to go to my son who really connects through silliness again. So the people who are able to try to understand him and laugh when he calls you Uncle, whatever. Yeah, they get to know him on a level that nobody else will and then actually see that he's very smart and funny and caring and kind.

02:01:33:24 - 02:01:36:04

Erin Croyle

Yes, they go out of their way to put.

02:01:36:04 - 02:01:38:00

Trina Allen

The I.

02:01:38:00 - 02:01:57:01

Erin Croyle

That whole like adult authoritative and they learn to interact with him person to person. So the whole respect me by calling me mister Mr. John Doe is is ridiculous. The people who say, Hey, call me Walt. Hey, call me Trina.

02:01:57:03 - 02:02:18:10

Trina Allen

Come on. Yeah. It's like you don't need to abdicate your empowerment. It's like people are like, Well, you can give children all the power. And I'm like, my God. Is that there's a lack of power. We can all be empowered. Hey, people think the power needs to be hierarchical and the reality is that that's dangerous. Once power becomes hierarchical, it becomes problematic.

02:02:18:12 - 02:02:44:17

Trina Allen

There are times in which I will use that power. When a child is running across the street and there is a car coming, you better believe I'll use my voice. You better believe I'll use my power to prevent that from dying outside of that hierarchical power doesn't really matter. Doesn't need it. We can both be empowered. And if my job isn't to squash you down and to show you how to, you have to become like me or like this ideology of who I think a person should be.

02:02:44:19 - 02:02:48:09

Trina Allen

My my joy is in being empowered with you.

02:02:48:11 - 02:03:13:20

Erin Croyle

Your example just then, is a perfect example of why for behavior. So you think about elopement, which can be very confusing. I was able to really understand it better when I stopped yelling Stop and I quietly followed and gently put a hand on his shoulder and said, What's going on? Yeah. When you stop to listen in, interact instead of barking orders.

02:03:13:22 - 02:03:39:01

Erin Croyle

And I think it's really important, especially with kids with disabilities, that require more attention and more care. They don't have much authority over their body or themselves. how putting on a shoe. And you can't say that it hurt you, the food that you're fed if you cannot feed yourself, what if you don't like it and you're not able to tell someone because no one's figured out how to listen to you?

02:03:39:03 - 02:03:55:06

Trina Allen

The body fascism that we can talk about that for a long time. And I think that around bathroom issues it's so it's it's so needed. It's one of the biggest abuses that I feel like happened in public education. That is just unfair.

02:03:55:08 - 02:04:07:09

Erin Croyle

Let me ask you this, Chino. We've been talking for almost 2 hours now, and I didn't even get to the question that I should have asked Mid-interview, which is where do life skills fall into inclusion?

02:04:07:11 - 02:04:29:05

Trina Allen

yes. If you are teaching something that is straight up serious, that's it. You are doing your child a disservice regardless of what you're teaching. Life skills should be brought into the classroom, period. It doesn't just help students with disabilities. It helps every single kid. If you are teaching something about ratios and measurement and you don't bring in the cake mix, I don't know what is wrong with you because you just wasted something.

02:04:29:07 - 02:04:58:12

Trina Allen

Yeah. Life skills. Who taught you how to figure out a mortgage? Nobody is so stressful, right? And you're like, even that. Why is there a tennis? You know, like, that's the level, right? That's the level I understood about life skills. Feel like that's a huge disservice. I feel like that's a huge disservice to all us when you can teach theoretical things and have a life skill aspect to it.

02:04:58:14 - 02:05:04:19

Trina Allen

By not doing that, you're only not doing it for, in my opinion, those reasons.

02:05:04:21 - 02:05:25:24

Erin Croyle

I Wow, thank you. Because it's funny, I didn't put the two together until this point, but I've often thought, why don't high schools have you know, back in the day they called it home economics, but you know, a basic class of cooking cleaning, scrubbing a toilet, sewing a button, bills, personal finance.

02:05:26:01 - 02:05:38:24

Trina Allen

How to get Social Security disability. I mean, just a real world stuff. Yes. What to do when your medical thing denies you. You know, there are some things I needed help with.

02:05:39:01 - 02:05:49:16

Erin Croyle

Yeah. I wish I could turn back the clock and have someone teach my 18 year old self or freshman year self of high school things that I didn't learn until I was 45.

02:05:49:17 - 02:05:53:01

Trina Allen

What a capitalizing loan is right here.

02:05:53:01 - 02:05:55:15

Erin Croyle

Very traditional versus Roth.

02:05:55:17 - 02:06:19:10

Trina Allen

You don't even know that. And it's so boring to me because I don't understand the premise because I never learned it. And I think that, yeah, so all of those things, life skills needs to happen, all of those things at every level, whether that's basic bodily care all the way to, you know, budgeting with IRA, you know. Yeah, those are things that everyone should have absolute access to.

02:06:19:10 - 02:06:26:07

Trina Allen

And I question the reason why we don't, you know, I again, I'm a systemic thinker and I think that those are very clear reasons why we don't.

02:06:26:09 - 02:06:38:05

Erin Croyle

That's true because it is. I mean, even if you take disability out of it, it's also a systemic problem and with less privilege are the ones that could really use that information the most. So why aren't we finding ways to get it to them?

02:06:38:07 - 02:06:40:05

Trina Allen

Because we don't want to because we don't want them to have that.

02:06:40:05 - 02:06:41:04

Erin Croyle

We want to keep them there.

02:06:41:10 - 02:07:02:13

Trina Allen

The system is it's wrong. No. 100%. I very much feel like life skills and also, quite frankly, their desires by the kids. In fact, that was the first thing I asked for this year. I was like, I don't care what what class or care what you y'all do, I'll take extra, you know, whatever I want a classroom with a sink.

02:07:02:15 - 02:07:09:12

Trina Allen

We cook a lot, We cook a lot. What they like to eat. They're hungry. They like to do. They need to.

02:07:09:12 - 02:07:11:01

Erin Croyle

Move hands on.

02:07:11:03 - 02:07:36:10

Trina Allen

Yeah, You can do multiple levels of ability during cooking and physical activities like art projects and things like that. Universal design becomes easier when things become both applied and content theory like it. It's so much easier. Like it's time to learn about geometry. And I have everyone from a child who is identifying a one versus a two to a child that can do pen to us.

02:07:36:15 - 02:07:43:17

Trina Allen

If I have that, then I'm going to build me some IKEA shelves. So we're going to talk about geometry.

02:07:43:19 - 02:08:01:12

Erin Croyle

Thank you. I really personally needed that. It just made a connection in my brain. I have a hard time learning, sitting in it, sitting there, listening. I have to either doodle or whatever for my own neurodiversity. And so I don't think most people are designed to sit in a desk and listen to a lecture. So I don't.

02:08:01:13 - 02:08:03:04

Trina Allen

Know, you know.

02:08:03:06 - 02:08:19:04

Erin Croyle

Hence universal thinking. So full circle here. Life skills, Universal design for living and learning, inclusion. It's all interconnected and it really comes down to completely rethinking how we view our classrooms.

02:08:19:06 - 02:08:38:11

Trina Allen

And what's the production, what we want. Like if we're going to have capitalist terms, what is the production, what are we trying to create? Are we really trying to create robots who can sit back and test scores? Is that really going to benefit society? Will that benefit them in the society in which they live?

02:08:38:13 - 02:08:48:19

Erin Croyle

And also having children of many, many levels of ability allows them to learn the value of other people who.

02:08:48:21 - 02:08:50:19

Trina Allen

Maybe they undervalue, because.

02:08:50:21 - 02:09:20:21

Erin Croyle

Of the wisdom they've experienced. I see the empathy in my my, my middle child who is two years younger than Arlo. So, Emil, the empathy, he just exudes and understands. I and I think one, he was just born that way, but two, he and his brother have a bond because they've always been together. Amiel has no issue with kids, with, you know, he just he just is around them.

02:09:20:21 - 02:09:24:23

Erin Croyle

And does he say the wrong thing On occasion, sure. But the intentions are always good.

02:09:25:02 - 02:09:51:11

Trina Allen

Yeah, that is like the least. The idea that he is able to be sibling, like with anybody that walks into his space because he knows he doesn't have a preconceived expectation what an interaction should look like. He just sort of meets the person with her and does his thing and they do theirs and they do it together. Like that is something are locates like, you know, like he was open to it.

02:09:51:11 - 02:10:21:14

Trina Allen

He received that he's a person that temperament wise and personality wise, that was like that's worth that. But that's also like something that are a little bit less labor that he didn't have to do it in so pretty when it happens. And there's no way to really articulate just how beautiful it is when something works really well and you're like, This isn't hierarchical, this is just humans being sweet and kind to one another and gentle and learning and growing.

02:10:21:14 - 02:10:36:07

Trina Allen

And it feels really good. And when those moments happen, you're like, It should be like this all. It could be like this could.

02:10:36:09 - 02:11:06:21

Erin Croyle

It could be like this all the time. Educator, advocate, activist Trina Allan concludes this two parter with something we all need a little bit more of. In our next episode, we're talking employment with self advocate Dorothy Clark. She opens up about her experiences as a person with a disability, navigating the workforce from her start in sheltered workshops to serving as a mentor and board member.

02:11:06:23 - 02:11:23:07

Erin Croyle

Be sure to share, subscribe, like follow or whatever it is you need so you get a ping when it drops. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

Imagine being treated as a guest in your own school.

For many students, not only is that their reality - it's by design.

In part 1 of this 2 part episode, Erin Croyle and special education teacher Trina Allen break down what needs to be done to create meaningful inclusion in academics, throughout our school communities, and beyond.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Talia A. Lewis' Working Definiciton of Ableism.

How much are students with disabilities actually included? This breakdown demonstrates there is much work to be done.

What is the Affordable Care Act?

National Center for Education Statistics releases various annual reports and as well as topical studies.

More on the Ithaca City School District.

Inclusion benefits EVERYone.

Learn more about the Individuals with Disabilities Education Act (IDEA).

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's partnership for People with Disabilities.

01:00:39:04 - 01:01:08:18

Erin Croyle

This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability can be. But we tackle the tough stuff too. Inclusion could be one of the most complex. As guest Trina Allen points out, students with disabilities are often treated as guests in their own schools. Trina should know.

01:01:08:20 - 01:01:28:22

Erin Croyle

She's a special education teacher who moved all the way across the country with her family to work at one of the few school districts she could find that is striving toward meaningful inclusion. Trina, thank you so much for joining me.

01:01:28:24 - 01:01:38:13

Erin Croyle

Champions for inclusion are real life superheroes, and superheroes typically have some great origin stories. So let's start with yours. How did you get to this place?

01:01:38:16 - 01:01:59:07

Trina Allen

Well, first off, it's an honor to be here. So thank you. And I've always worked with kids. I worked in group homes and transitional living programs, and I did hotline services and things like that. And it was it was what I intended to do. I tended to be a therapist and I went to school and got my bachelor's in psychology and was going to move on.

01:01:59:07 - 01:02:22:07

Trina Allen

And then the art therapy, I wanted to be an art therapist and the art therapy program I was assisting in was shut down. And it was for a group of students that had really intensive trauma and really needed that. Therapy is a heartbreaking thing, but they offered me at the school to work and the program for autistic students.

01:02:22:09 - 01:02:48:19

Trina Allen

And so I, I said, Yeah, sure. And within a month they offered me a teaching position and I was in no way prepared or qualified any fashion for that. And I jumped in right away and eventually got my master's in special education. And, and it was at the most secluded, the most restricted, most segregated placement for students who had been forcibly exited from the general public education.

01:02:48:19 - 01:03:20:16

Trina Allen

And I didn't know that I didn't know anything at the time. I didn't know anything about histories of disability and resistance and pressure for inclusion. And so I left there when I realized I couldn't. I was there for years. It was very painful to see students who could not get what they need and who needed so much. Their support needs were being routinely denied and I did my very best in making this space as loving as it possibly could within the context of extreme deprivation.

01:03:20:18 - 01:03:38:24

Trina Allen

It was terrible. And so I went to the district thinking that it would be better and I loved it, and it was still segregated and I did a lot of things to force that to change. As I understood more and more what my students needed and also listened to people listen to it. Disabled adults who were like, This is what needs to happen.

01:03:39:03 - 01:04:16:08

Trina Allen

And the best that I could do was harm reduction. I had a reverse inclusion program and I thought that by proving it could work and it did, that it would make the systemic inclusion of my students easier. Like, Look, the kids are already in, I already did it. We got it. Let me let's now make it institutionalized as opposed to like just this thing that we tagged ragtag together and there was literally no fat, no willingness, nothing, not even an ideological concern, no disabled people making any of the decisions.

01:04:16:10 - 01:04:40:06

Trina Allen

And I realized, okay, like I'm getting paid to segregate kids and I got to go. And so I we looked across the country and had like five states. We were thinking about an ethical city school district said, hey, inclusion. And then it's actually done for students with high support needs. And I was like, okay, this might be just the website.

01:04:40:08 - 01:05:06:15

Trina Allen

What happens if we move there? It isn't like that. And I have been glad to say that. Well, there's so, so, so much work to be done. It's a possibility. It's a possibility. Whereas everywhere I worked in the past I haven't been and that's where I am now. And I would say that my continued journey is really understanding my own neurodivergent and moving in the ways in which I want the world to look and listening to disabled voices.

01:05:06:15 - 01:05:08:20

Trina Allen

That's sort of where I'm.

01:05:08:22 - 01:05:20:06

Erin Croyle

Trying to tell me more about the search for inclusive school districts. When you were searching, how many were out there that even talked about having inclusive practices?

01:05:20:08 - 01:06:06:22

Trina Allen

Well, like all things that get co-opted sort of by general rhetoric and they become meaningless. And so the word inclusion, the word diversity equity starts out as a rallying cry for changing systemic oppression, and it gets whitewashed into something that's just up towards a system that looks a little bit nicer, if that makes sense. And so it was very hard to be honest when District said inclusion, and what they could have meant was they have a nice bench for kids to sit out together and not think their their curriculum and their program instruction and their general ethos and the way in which they provide space for folks with disabilities to lead to be their own

01:06:06:22 - 01:06:31:07

Trina Allen

heroes. Right. And I think that is almost nothing you can find on the website. So it was really difficult. I did look up several writers that I liked. I looked up several districts that were talking about doing cohort inclusion, and we just hoped, you know, we just really felt there was a lot of this looks like the best.

01:06:31:09 - 01:06:39:20

Trina Allen

And I don't know that it is. I mean, honestly, the district we chose looks like the best that I could find from that sort of research.

01:06:39:22 - 01:07:06:23

Erin Croyle

Meaningful inclusion is rare and doing it well is an investment in both time and resources. It's not something that our flawed system of public education is set up to handle. According to the National Center for Education Statistics, elementary and Secondary, public school revenues across the country total more than $950 billion during the 2020 and 2021 school year, which is the most recent data available.

01:07:07:00 - 01:07:51:18

Erin Croyle

The Federal government contributed 11%, 46% came from state funds and 44% of that 950 billion plus dollars came from local sources, most often property taxes. This set up often pits school districts who are dealing with teacher shortages, aging buildings and students with diverse needs against the communities they serve. And it's frustrating, especially because the Individuals with Disabilities Education Act, also known as ID a OR idea, which was enacted nearly 50 years ago, was supposed to provide funds for students with disabilities to have access to a free and appropriate public education, also known as faith.

01:07:51:20 - 01:08:10:04

Erin Croyle

But it has yet to be fully funded. I can't remember the exact number off the top of my head. It's it's obscenely low. So. Trina Well, I find that figure, which I'll also put in the show notes. Tell me, how is it even possible to do meaningful inclusion when you don't have the funds to support it?

01:08:10:06 - 01:08:52:00

Trina Allen

The idea comes out of honestly, radical liberatory work of disabled activist who pushed and pushed their who risked their lives and risked their their freedom to be able to create a space in which the children that they knew would come after them would benefit from it. And that is the history of resistance in this country. And I think the funding of that and the ways in which we as a culture gate keep those things is it's we don't want to sound like we're anti that, so we just don't fund it, right?

01:08:52:02 - 01:09:24:09

Trina Allen

It is by design. It's not an accidental not funding and I would say that goes for all education. I do not as a teacher and I love being a teacher and I will continue to work under these conditions regardless. But public education is bleeding. It is not it is not just inclusion. It is everything. It is the level of deep need of our students for connectivity, for learning, for presence, and for emotional stability in a world that's provide that.

01:09:24:09 - 01:10:01:01

Trina Allen

And I think when it comes to civically, then you already have an open wound and now you're trying to treat it with 25 different. There needs to be I mean, every kid needs an IEP, right? Every kid needs an IEP, right? There should be no special in education. That should absolutely be that. And and because it's not and because the system is set, the false ideas of what human ability and production should look like, we need to find specifically inclusion, what we should be funding universal design.

01:10:01:03 - 01:10:11:01

Trina Allen

We should be funding universal design for everybody. And folks with higher support needs, whatever that looks like in whatever area they might have, that should be centered.

01:10:11:03 - 01:10:31:15

Erin Croyle

Right on screen. A universal design for living and learning needs to be embedded in everything we do, not just our schools. Circling back to idea funding. When it was enacted in 1975, it was supposed to cover 40% of costs for students with IEPs. Currently it's 14.7%.

01:10:31:20 - 01:10:32:05

Trina Allen

That right?

01:10:32:08 - 01:10:56:03

Erin Croyle

Schools can and do build Medicaid for the services their higher needs students receive. For folks who might not know children with disabilities that are significant enough to require lifelong support and care can apply for and receive what are known as Medicaid waivers that support home and community based living rather than institutionalization. Now, on the surface, this sounds like the perfect workaround, but it too is problematic.

01:10:56:05 - 01:11:21:01

Erin Croyle

So much so that the details deserve a podcast of their own. The short of it as we know, health care in this country is not particularly stable. The Affordable Care Act removed lifetime caps on Medicaid, but there's no guarantee those caps won't be introduced. Based on our election cycles, some might think that these concerns are alarmist or unlikely, but unfortunately they are not.

01:11:21:03 - 01:11:43:00

Erin Croyle

A good example. My son was born in 2010, just not that long ago. It's the same year that the Affordable Care Act was enacted, and had it not been, my son would have likely been denied medical coverage because he was born with Down syndrome, which is considered to be a preexisting condition. In addition to that, my son's medical complexities are many.

01:11:43:05 - 01:12:07:20

Erin Croyle

He gets medications that are thousands of dollars a month, and thankfully, our insurance and his Medicaid pay for that. But thinking about lifetime caps and what he's going to need over a lifetime, I don't want to ever think about what would happen if there was a cap on his medical coverage. As far as Medicaid payback laws, I very much get the why behind them.

01:12:07:22 - 01:12:27:17

Erin Croyle

But Medicaid doesn't take into account the money lost by families hiring lawyers to assist with the copious amounts of paperwork it can take to set up accounts in trust for your child. Because it really is that complicated. And then there's the lost income that comes with caregiving, and that's not a small amount. Trust me, I know this from experience.

01:12:27:19 - 01:12:57:14

Erin Croyle

There is nothing simple about any of this. It's complex. And as you mentioned, it's systemic. It's not just our schools. It's across all parts of society. It's intermingled. So much so that we have to look at the bigger picture to truly understand it. And a lot of our school administrators don't really see that. And all of this is harming children and it's causing undue hardship for their families, and it's further marginalizing people with disabilities.

01:12:57:19 - 01:12:59:21

Erin Croyle

From day one.

01:12:59:23 - 01:13:32:24

Trina Allen

100%, 100%, there should be for the things that you need for survival. And I would say belonging is certainly part of that. But just for the material of life, shelter, food, medical, that should be provided because we exist and it should be provided to the level of need. Right. So it is absurd to think about worrying about how much your child will cost and whether you can afford to save them.

01:13:33:01 - 01:14:00:19

Trina Allen

That is not a position in an ethical country. That is not a position in an ethical society. It's not. And yet it is something that we think about all the time, or whether with their life will look like when we're gone. I ruminate on that, and part of that is because there aren't the safety nets and it's it's a hard place to be, but it's also a place to move from because in my opinion, this never there's never an end to a laboratory struggle.

01:14:00:19 - 01:14:01:22

Trina Allen

Right. So.

01:14:01:24 - 01:14:31:13

Erin Croyle

Right. And I think that especially with folks, aging disability is something that impacts everyone's life. One in four Americans have a disability that impacts their daily life. And when you think about that, that means either you or someone you love or someone close to you will have a disability in your lifetime. And so for me, that didn't happen until my son came into my life, not in a meaningful way.

01:14:31:13 - 01:14:52:16

Erin Croyle

And so I think that's part of why I find origin stories so interesting, because I don't even know who I was before that happened. I would probably be embarrassed if I talked to 30 year old me about what people with disabilities need because I probably knew nothing. And that's why I think it's important to have these conversations.

01:14:52:18 - 01:15:20:02

Trina Allen

But so I think there are several things with that. One, we live in a society that intentionally teaches us not that by segregating children right? If you notice, if you watch the segregation progression, disabled people are sort of sheltered and loved in this very paternal, rustic, patronizing way when they are small children. Everyone loves the headstart that has, again, pro headstart.

01:15:20:04 - 01:15:39:16

Trina Allen

But, you know, that shows the video of the little boy with his new gait trainer. And it's just this thing and makes people feel good and great. And and he's included in the classroom in kindergarten and then he gets to be in third grade and the curriculum starts to change. And we'll he has a really great teacher of fourth grade, so it works.

01:15:39:18 - 01:16:01:03

Trina Allen

And then sixth grade happens. And that switch that you just see, maybe it's that teacher that just doesn't understand. And then pretty soon in seventh grade, in eighth grade, and then by the beginning of high school, he's alone in a room. It's just like segregation. But by the time he's 25, where in society is this man with this intellectual disability?

01:16:01:05 - 01:16:32:05

Trina Allen

And how is he included? And the answer is, you don't even know him. He has been so significantly excluded. The kids will remember back to him in preschool, but would have no consideration of how they would work with him at a job. Right. Right. They're gone. And then at 50. At 60, it's institutionalization. And that is a boy.

01:16:32:07 - 01:16:59:14

Trina Allen

It's a boy. It is a society based on eugenics. The idea that there is only one way to look. That there is only one way to be. And there's only one way to produce for a society that's all about production, exploitation and consumerism. Right. I suggest that if you don't produce, then you are not productive. That means if you don't produce for that system, because we all know, folks, we all produce, right?

01:16:59:14 - 01:17:19:24

Trina Allen

We are. We are the production of ourselves. Right? But if you don't produce in a very particular capitalistic kind of way, you're excised from society and I don't think I knew that at 25. I don't think I knew that at 15. And why? Why didn't you? And I know that when we were young, it's because they were stolen from us.

01:17:20:04 - 01:17:38:23

Trina Allen

And that's why inclusion is the primary most important thing that we should be fighting for, even when public education is a wound that we're like, my gosh, we're there to get. It's not the thing that we can let go of. It's the thing we have to fight for, especially in these cases.

01:17:39:00 - 01:17:59:20

Erin Croyle

I mean, everything you just said, I, I hope that I can maintain with my own neurodiversity my focus on this question, because I want to say, you know, what you said about the example of the child and how everyone loves him when he's young. I see it in my own son. He was little kid, cute and everyone loved him.

01:17:59:22 - 01:18:24:05

Erin Croyle

And I slowly, as he got older, saw that change from stares with smiles to stares with, not smiles, not welcoming, stares at stores in places. And you know, the tics and the quirks and the stimming that he does not as welcomed and I think about that. I think about our generation and how we were never exposed to anyone different.

01:18:24:07 - 01:18:52:12

Erin Croyle

And even currently, I think that we like to think that inclusion is happening. But when you look at the statistics, right, in 2022, more than two thirds of students served under IDF with the following disabilities. They spent 80% or more of their time during the school day in gen ed classes. So speech and language impairments was 89% specific and learning disabilities 76% other health impairments 71%.

01:18:52:14 - 01:19:26:00

Erin Croyle

Development mental delays 70% visual impairments 69%. But when you look at more significant disabilities, deaf blindness, that percentage drops to 31%. Intellectual disabilities 21% and multiple disabilities 16%. So inclusion is happening in a positive way. But when we look at students who are more different than typical and I say in quotes, typical because what is typical? What is normal?

01:19:26:06 - 01:19:37:21

Erin Croyle

What is it? We don't even what those words are so ridiculous. And I want to acknowledge that. But people who are different from the conforming are less included.

01:19:37:23 - 01:20:08:18

Trina Allen

So is 100% related to support need and it's 100% related to an ideology as the education has an expected outcome. And both of those are problematic. And based on a white supremacist standard, when you specifically talk about that, it is so hard because in my previous classroom, the majority of my students were mostly disabled. And I think there is this really big misunderstanding.

01:20:08:19 - 01:20:58:14

Trina Allen

You know, the presume competence campaign is super important. And that is because when people have communication challenges, whether that be from a motor issue or whether that be from an intellectual disability issue or a multitude of those factors push together. It changes everything. And the ways in which my students with higher support needs and multiple modes of multiple disabilities really the way in which they have been treated, the way in which they have been infantilized, the way in which they have been segregated, the way in which they have been treated as a guest in their own school is honestly feel the 3000 mile move.

01:20:58:15 - 01:21:27:18

Trina Allen

I couldn't do it anymore. And it sounds terrible because it's like second area trauma is a real thing. And I acknowledge that I'm a human being and I love them. But it's not about me. Right? But at some point I'm getting paid for it to be about me and the look on a face of a child who a particular instance and this is one of those horror stories where it's not or to anybody who doesn't understand is a misunderstanding to most people, but a horror story to the person living it.

01:21:27:19 - 01:21:46:11

Trina Allen

And I had a student who used a AC and we were on campus high school, and he took his AC with them. They were going out to walk the track for just like a quick break before we had between reading and math. And he saw a ball because they were doing soccer or something that the class wasn't interrupting.

01:21:46:11 - 01:22:06:03

Trina Allen

You just grab the extra ball when he was playing with it. And the PE teacher on campus who should have known him, right. Should have known him, but didn't try to take the ball back and says that's not yours. And of course, he had set his AC down because he had run to go grab the ball, which he wanted to throw up and play with.

01:22:06:04 - 01:22:29:24

Trina Allen

Right. So he has AC on the ground and he grabbed it back. It was like not, you know, like I'm playing with it. You have your turn for sharing that, like with his sister. And she said some things to him. And luckily one of the students that it was in my reverse inclusion program, she ran over there and explained, his AC is right there.

01:22:30:00 - 01:23:00:04

Trina Allen

Hold on. And she said in front of him, What? He can't even talk. so this is like a now a very difficult situation for multiple reasons. My student, I have seen him cry once before. His knee came out of socket and he exploded in tears. That's the only time I've heard him cry. But all of a sudden and my door comes open and it's about 2 minutes before they're supposed to be back anyway.

01:23:00:06 - 01:23:25:20

Trina Allen

And the student is in tears hysterically. And I'm like, my God, his knee is okay. I'm in the cosmos. And luckily the reverse inclusion student had been there to tell me what had really happened because while these are amazing, he probably wouldn't have been able to locate like this teacher dehumanized me. And she said to him, according to my my student, you have your own balls in your own classroom.

01:23:25:20 - 01:23:28:18

Trina Allen

You can play with us. You don't need to play with arms.

01:23:28:20 - 01:23:30:15

Erin Croyle

Are you serious?

01:23:30:17 - 01:24:05:19

Trina Allen

Yo, I'm a lover most of the time. But you know, she needed to get some help. I was so mad. I was so livid. And of course, you know, my focus is on the students and also my other student who tried to navigate this. She herself has a disability, which is more on the like flash reactive aggression. And she kept it together instead of popping the teacher what she easily could have done and wanted to make that very clear, which I quite frankly understood.

01:24:05:19 - 01:24:25:07

Trina Allen

Yeah, but then it got him back to me because he was the primary concern. And of course I called his mom. I called everybody in the book, I called my supervisor, I called her directly. It was like, don't you ever, you know, that whole thing. And can I tell you all that happened? Nothing.

01:24:25:09 - 01:24:26:16

Erin Croyle

Of course.

01:24:26:18 - 01:24:46:02

Trina Allen

Nothing. Just misunderstanding. She didn't. She didn't know. And again, like, how do we live in a society where it's a I didn't know to treat you like a human being.

01:24:46:04 - 01:25:08:09

Erin Croyle

And this this is the problem I have when we talk about I work. Yeah, because the inclusion and that work, it doesn't include disabilities. Because if that was a student of color, it would be a completely different reaction. I mean, if the student had a disability and was a student of color, it wouldn't matter. It would still have happened.

01:25:08:09 - 01:25:18:22

Erin Croyle

What I'm saying is it was a non-disabled student of color. Let me be clear. Yes, I am. I don't feel like that was necessarily happen, especially the comment about you have your own balls.

01:25:18:24 - 01:25:52:17

Trina Allen

Right? Yes. The segregation piece. I think that when we look back on histories of resistance, right. We can look back on segregation and go, when was it ever good? Right? When was segregation ever for beneficial for the segregated party? And that is never there's something to be said about safe space. All right. That's real. That's different. That is led by and for people in an oppressed group making space for themselves.

01:25:52:17 - 01:26:29:15

Trina Allen

Right. That's different than a segregation and force by a societal hierarchy. You can see exactly what you're talking about is racial segregation was abhorrent. Disability embolism, segregation is abhorrent. And there is no place that we just allow it. Like in school, we don't allow direct segregation besides ability. We do it 100%. We do it 100%. In our intention and our focus, we segregate children all the time based on race and the ways in which it plays out in school.

01:26:29:21 - 01:26:57:11

Trina Allen

And I wish I could be more articulate about that. But it's the backdrop of everything. But it's not legally written down, right? It's not legally written down. It's legally written down for intellectually disabled students. We can give you percentages on when they are segregated and then it is absolutely, absolutely black disabled students are provided the absolute least inclusion.

01:26:57:13 - 01:27:20:17

Trina Allen

And that is based on the idea. The anti-Blackness and Abel ism is really the same thing is really the same thing. I really follow the working definition of Abel ism by T.L. Lewis, and if you ever look that up, it's quite beautiful and terrifying and terrible, but it's a good explanation of the linkages there, and we just accept it.

01:27:20:17 - 01:27:24:01

Trina Allen

And then they reframe the situation by saying it's in their best interest.

01:27:24:02 - 01:27:24:20

Erin Croyle

Exactly.

01:27:25:01 - 01:27:28:00

Trina Allen

And you're like, It is, but it's not.

01:27:28:02 - 01:28:11:23

Erin Croyle

Well, it's not. And also, I find that because of the generation of parents being raised in even more segregated areas, we question whether our instincts are right to fight, to have our child included, because our minds are still stuck in other areas. The working definition by Talia Lewis is that it wasn't. This was last updated and I'll put it in the show notes in 2020 to have January a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness.

01:28:12:00 - 01:28:44:08

Erin Croyle

These construct ideas are deeply rooted in eugenics, anti-blackness, misogyny, colonialism, imperialism and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, health, wellness, and or their ability to satisfactorily, literally reproduce, excel and behave. You do not have to be disabled to experience ableism. Yes.

01:28:44:10 - 01:29:13:08

Trina Allen

It's about behavior. Do you behave and can you produce and being a teacher? Of course. Of like, do I want my students to behave? my God, yes. Can we be nice? Yes. That's different. Between being nice and producing an expected behavior. A lot of what we talk about to students we tell them to do and when we redirect them Head doesn't have a lot with being nice, right?

01:29:13:08 - 01:29:39:03

Trina Allen

Being kind. It has a lot to do with being in control. And we need to be focused more on what actual kindness and inclusion and reaching the kid, rooting out that hand right When we start focusing on some more of those values and making sure that all students have with it the support level that they need in different areas, that's universal as I move, Right?

01:29:39:06 - 01:29:47:20

Trina Allen

That's that's making it safe and welcoming, loving space for everyone involved. And we don't have that right now. We don't have that society.

01:29:47:22 - 01:30:08:22

Erin Croyle

We don't. And I hope we have time to get to this discussion about universal design for living and learning. And it might be a separate one. We'll see about time. What I do want to want to kind of focus on is what can we do now? What does inclusion look like? And I want to start with early, so and I'll share my own story.

01:30:08:22 - 01:30:39:05

Erin Croyle

You know, my son, again is just 1014 when we lived in the D.C. area, the school, our community school, I really wanted him to go to. So I advocated for that for kindergarten. And he was going in. For anyone who doesn't know, reverse inclusion is when you have a classroom pretty much designed for students with disabilities, but you bring in typical non-disabled peers and it's a great model because it should be inclusive, but it's just not.

01:30:39:05 - 01:30:41:19

Erin Croyle

Would you say that's right in your experience?

01:30:41:21 - 01:31:04:12

Trina Allen

Yes. So it is harm reduction. So for my last several years, they made up a class that was sort of no credit, no credit. And those students were either funneled in because they had a free period and they needed a place to get somewhere, or the students genuinely wanted to take my class. And there was 8 to 10 students per period and they would change every quarter.

01:31:04:18 - 01:31:24:04

Trina Allen

And at first it's very like school like, but then it becomes like family, like. And then I'm like, Dude, you haven't been in my class for two years. What are you doing? You didn't go, did you go to math class? Because like what? So it becomes very familial in a way that I wish school was their birthday get celebrated.

01:31:24:04 - 01:31:52:07

Trina Allen

They get to go on field trips with us. It becomes a benefit for them and a benefit for my students. While that family loving aspect was, I would say, the best part of my teaching career so far, it is cultivated by personality, right? And this particular set up in this particular moment, and it does not allow for any systemic change.

01:31:52:09 - 01:32:18:23

Trina Allen

In some ways it is limiting even more than not doing it at all. Its benefit, I would say absolutely to do it, but it sort of makes everyone around feel good about the scenario without actually changing it, right? So that when we went to dances and we went to the Disneyland trip, we did all this, my, my students had peers and knew them that we were cool.

01:32:18:24 - 01:32:36:13

Trina Allen

It was a fun classroom to be. And then it becomes that and it becomes like a sibling relationship and it's beautiful and it's gorgeous and it's not sustainable. And doesn't go anywhere because it only happens because I chose to do it. I'm not there at that school anymore and there's not a single to any of the segregated classrooms anymore.

01:32:36:15 - 01:32:48:04

Trina Allen

So it's not replicated, but it is harm reduction that you do temporarily while you work for systemic change. It's more segregated now than it was before I started.

01:32:48:06 - 01:33:13:18

Erin Croyle

Yeah, I think I think that's exactly what the problem is. We're kind of waiting for systemic change. And in my experience, those of us who are working towards that change are also parents or caregivers of kids with disabilities. And so we cannot fully dedicate ourselves because of the systems working against us as caregivers.

01:33:13:20 - 01:33:37:23

Trina Allen

And the fact that they don't know. Do you know how many times how many papers I have been in? I'm like, You're plainly lying. And as I got tenure, that's right. As I got tenured in my position became solid, I started getting I would say my classroom was lovely, right for us and lovely as a segregated table as design could be, right?

01:33:37:23 - 01:34:11:01

Trina Allen

Yeah. And I started getting the parents that were, quote, challenging, which means lawyered up because my high school, the high school, they realize nothing I say matters, but my lawyer says how it does. And that's that's real talk. That's real talk. And so that's what ended up happening. And as I started realizing, I learned I learned more about educational law through the lawyers of my parents than I ever did in school.

01:34:11:03 - 01:34:32:13

Trina Allen

And also from our own district lawyer who was also lied to. I mean, it's just why you have no idea. There's so much to talk about that that sidestepped it. But because of the fact that you have to fight and you have to have money and power behind you, like it's not just a matter of, we're tired.

01:34:32:13 - 01:35:09:24

Trina Allen

It's a matter of actual resources and knowledge. They're told that's not available, that's not true. You just did it for another parent who had a lawyer. It's like a literal literal. It could be IEP back to back and in one that one is unavailable. And in the next, if you did a cross section of race and class regarding support services and dis services like speech therapy and things like that, who get speech services within a multiply disabled classroom.

01:35:10:01 - 01:35:34:15

Trina Allen

And of course there's a separate problem of then over pathologizing black children for sure. I'm not talking about that. That's a separate issue that we can absolutely talk about. But the issue of black children who absolutely need speech language services, who have an actual speech language, disability and need an AC, and do they have that and what are their services like?

01:35:34:17 - 01:36:12:03

Trina Allen

Is it 30 minutes in a group group therapy once a week, twice a month? Because that's appropriate. It's not you know, it's not it's not appropriate at all. And yet, if you did that longitudinal study of the rates of support services based upon race and class, we would tell ourselves it is unbelievable. Parents who don't have power, money behind their name and social capital for whatever reason, cannot affect change in the same way the people who do can't.

01:36:12:05 - 01:36:16:12

Trina Allen

It doesn't matter if you fight day in, day out does matter.

01:36:16:14 - 01:36:24:20

Erin Croyle

And that actually circles back to what I've seen in my own experience and exactly where I want to go to next, which is.

01:36:24:22 - 01:36:25:11

Trina Allen

Given.

01:36:25:11 - 01:37:08:01

Erin Croyle

The flaws in the system. Right. What can we do right now? So I'm, for example, and not loaded yet, but I am a strong advocate who has a level of privilege and so I can take the time to read and understand how to advocate for my son and for other children with disabilities. So when he was leaving his reverse Inclusion preschool, which was the model that they used in the district that we lived in in Northern Virginia, flawed as it may be, until we can have universal pre-K in our public schools, it was pretty great considering, especially since the private preschools in the area were expensive and the ones that would actually help my son

01:37:08:01 - 01:37:18:01

Erin Croyle

and let him attend, their school ended up just putting him in a special classroom. They're like, Why am I paying for this? Yes, I'm not going to pay for this.

01:37:18:03 - 01:37:20:09

Trina Allen

Okay? You're not going to have I'm.

01:37:20:09 - 01:37:25:02

Erin Croyle

Not going to pay for what he's going to get regardless. I thought I would do better. So by.

01:37:25:07 - 01:37:25:20

Trina Allen

Right.

01:37:25:22 - 01:37:54:15

Erin Croyle

It's infuriating. So when we had our transition meeting to get him into kindergarten and I've written about this, but it's it's heartbreaking. I had to fight for my son to be included in a general education classroom in kindergarten. And he got in and he was the first kid with Down syndrome with that significant of a disability, if you will, to be in a general ed classroom at that school.

01:37:54:15 - 01:37:58:09

Erin Croyle

Yes. Is that the 2010?

01:37:58:11 - 01:38:26:22

Trina Allen

I know, I know. I know. It's so painful. You know, I remember and this is not exactly comparable, but it's similar. I had a student to one of the to my class that reversed include a kid who really wanted to take one of my students is mostly disabled with a cognitive disability and quadriplegia. She uses an eye gaze, a C right high tech and her math is obsolete.

01:38:27:00 - 01:38:58:12

Trina Allen

We can talk a lot about the misplacing of her in my class and also my decision to not focus on that because she wanted to stay. So I will focus on her decision. That kid wanted to take her to the math class as an inclusion day. Just just math one math class. And the math teacher was like, okay, okay, you know, like it.

01:38:58:14 - 01:39:16:08

Trina Allen

And they did. And of course, it went totally well and she had a blast and it was great. And, you know, everything was fine. And she showed off and she does very, very much that personality type. And it wasn't a fight to get her there. It wasn't like we were going to fight for her to be in the math class or anything.

01:39:16:10 - 01:39:39:02

Trina Allen

But it was one day and when I had broached the subject of it being more, it's about it already worked. But no. And so and pre-K, you can fight right in K you can fight, but by high school you need like five layers. It's not even a platform. You can quit. It's not even a platform to quit.

01:39:39:04 - 01:39:57:12

Erin Croyle

Well, in some cases too, though, Trina I share my personal experiences because I think it's important. I do talk to my son about sharing this and he's okay with it. And the question of that being okay is another question for a whole other podcast. You know, consent and what that means.

01:39:57:14 - 01:39:59:08

Trina Allen

Yeah, but I totally hear you.

01:39:59:10 - 01:40:21:04

Erin Croyle

But here's the problem that I am running into. It was a fight in elementary school to keep him in a speech therapist I still like. Yes, I only talk about PTSD. I still remember the calls I would get and I could feel at that school. The evidence, the way they were trying to stack up, how he didn't belong.

01:40:21:06 - 01:40:26:19

Trina Allen

They were making their case. They're making the case They're making their case that they're their service was to make the case that he doesn't.

01:40:26:19 - 01:41:01:16

Erin Croyle

Right. And then I have friends and also other parents and caregivers that I have helped and other people I know through our networks. Because when you have a kid with a disability, you just know other people and you get what you say time and time again. Ah, you know, the psychological testing of people using IQ to place kids in classrooms or multiple disabilities classrooms when we know that IQ testing and the stuff that they say is not IQ testing but really is is antiquated and is not a measure of our children's intellect, it.

01:41:01:16 - 01:41:22:23

Trina Allen

Is based on a system that is able at its base for them to fail. The whole point is the standard deviation of norm. Yeah, I know. It's literally I always say, I know you have to legally do this for my daughter's IEP, right? I know you have to legally do this, but I had no interest in talking.

01:41:23:00 - 01:41:49:03

Erin Croyle

I refused to allow the schools. I had my son tested by a doctor at Johns Hopkins, which is one of the best medical places in the country. And the number that was presented to me after that and the analysis that she gave me, this doctor, highly regarded, I just wanted to burn it because I knew that it was not a measure or a reflection of who my son was.

01:41:49:05 - 01:41:55:15

Erin Croyle

And in my conversation with her, I was I just thought, how are you a professional in this field?

01:41:55:17 - 01:42:16:20

Trina Allen

Thank you. And they really believe it. They believe being as I know your son, right? Yeah, I can. 300,000 times tell you that what he is and how he is and the ways in which he is and the ways in which he's going to become and the ways in which he is becoming. We'll never look on that test.

01:42:17:00 - 01:42:47:10

Trina Allen

And the reason why is because that test was not decided for him to become that test was excited for him to go away. Right. Was to backtrack. It was to push him out. He is amazing. And whatever that test said was not trying to capture that. Luckily, again, it's nice to work in the same school that your child will be assessed at.

01:42:47:12 - 01:43:03:23

Trina Allen

Right to say that. So I know the tester of my child who also has Down syndrome. I was like, girl, play with her, have a good time. But please understand that when you come back with not testable, I'm going to be like saying, Yeah, you did your job right?

01:43:04:00 - 01:43:30:05

Erin Croyle

And I anyone listening to this who is in a similar situation, I want you to hear Chinas words because to me, what you said about my son. Because to me, that's every every kid who was subjected to three, 3%. Right. And I want you to hold close to yourself and remember that students without disabilities are never subjected to the testing and the scrutiny and the microscope that our children are put under.

01:43:30:07 - 01:43:45:19

Erin Croyle

And it breaks my heart that we have to put them through this. And I refuse every single test possible because of that. He does not deserve to be analyzed like some experiment, and none of our kids do.

01:43:45:21 - 01:44:14:07

Trina Allen

No, they really don't. And there is nothing wrong with saying this is where he is when it comes to literacy. This is what he is doing. When it comes to social skills. It's fine to talk about what a kid is doing right. There's nothing wrong with that. I want to know those things. I want to know if when you asked him last time if he wanted peanut butter and jelly and he said yes, whether that actually reflected what he wanted, I want to meet his needs.

01:44:14:09 - 01:44:37:15

Trina Allen

Right. Right. That's different than assessing where he is on a scale that's meant to make him an outlier. It's just a very different thing. The purpose is different, right? Is the purpose to meet his need? No, this assessment shows us that this would work. And what? No, You know that that's not what you're doing. Not looking for something?

01:44:37:17 - 01:44:49:16

Erin Croyle

No. Some of the testing is to try to get a picture of who they are and what their needs are. For one thing that I've experienced in the district we're both in now, I don't think happens many other places.

01:44:49:18 - 01:44:50:00

Trina Allen

Yeah.

01:44:50:06 - 01:45:00:14

Erin Croyle

Is in honesty from educators that the stuff that they have to do and they have to show us is not a reflection of who he really is. And they recognize that.

01:45:00:19 - 01:45:01:01

Trina Allen

Yeah.

01:45:01:07 - 01:45:09:07

Erin Croyle

The other thing that I have experienced is I have had occupational therapist and speech language pathologists for those listening.

01:45:09:07 - 01:45:10:04

Trina Allen

So that's a.

01:45:10:06 - 01:45:39:04

Erin Croyle

Right. We all know the acronyms, but not everyone does. I have had my son's educators take the time to do the assessment as needed with the rules and the time constraints, but then take the time to give my child the adaptations, the time that he needs for those standardized tests and the information they come back even surprised me when they gave him what he needed to show what he knows.

01:45:39:06 - 01:45:47:01

Erin Croyle

He knows way more than even I as his biggest champion, realize. Yes, but that rarely happens.

01:45:47:03 - 01:46:18:09

Trina Allen

So that's why we're really lucky. And I'm going to say this like I've worked now in the field since 2005, so that makes me really old. So within that time, the discrepancies services provided it and the district that we're working in or working with or whatever is far, far better. So I will tell you, I had to for my daughter and I'm a teacher within the district in my previous district, the teacher within the district power, a lot of power to be honest.

01:46:18:12 - 01:46:47:05

Trina Allen

And within that framework I had to fight to get her a half an hour of speech and language a week, and then two additional sessions of groups I had to fight. It's not like I just got that. I went through the channels. Love you. I respect your report. I appreciate the time you put into it. I'm just going to go ahead and let you know that I looked at the recommendations and I'm going to request independent evaluation.

01:46:47:05 - 01:47:10:02

Trina Allen

And you had to fight and had to do that. You know, And she got it and she still didn't get it out. And I will say that's why I do believe it's possible. And so when we talk about systemic problems, I think it's really important to understand how bad it really is, because I don't think people understand how bad our culture really is in regards to able I and how deeply ableist and eugenic everything just based on eugenics.

01:47:10:04 - 01:47:26:22

Trina Allen

And that's really a dark landscape to go from. But where do we go moving forward? And I think this is one of those ways in which you disrupt. I have to follow the teaching, right? I mean, I got to do my test. I know how to do it. I can do it. You know, I'm going to make it fun, though.

01:47:26:22 - 01:47:48:06

Trina Allen

You know, any kid that I'm forced to subject to a standardized test is going to have a real good time with me. And I think that you can disrupt those ways by making the actual lived experience better. You can disrupt by what you're doing, saying no until you absolutely have to for this particular thing. Right. You can talk about how they're invalid measures.

01:47:48:06 - 01:48:06:03

Trina Allen

I think that's important. But I think more than anything it's about the ways in which you treat the people in front of you. Yeah, you're not going to work within the system and change it without having to follow the things you don't like. That's why I love being outside of the system, quite frankly, and I love being a disruptor in the community.

01:48:06:03 - 01:48:29:07

Trina Allen

I love being a protester or an activist. That's great. But I also need jobs. So and I think that those ways, like what you just talked about, the speech pathology, doing what they need to do, but then say, let me show you a list of everything he said. He knows this, this and this. Let me tell you a story about what he did.

01:48:29:09 - 01:48:59:20

Trina Allen

Let me show you a video, a picture about something he is proud of. Let me teach him how he can show you. I think the more that we can find in ways in which we interact with the individuals in front of us in a humanistic and loving and equal nonhierarchical way is one important and then two, as advocates, there is that superhero aspect of it's my job to fight, and that's my job to fight.

01:48:59:20 - 01:49:33:04

Trina Allen

Absolutely. As an ally, Yes. As a person with power. As a person of privilege. Yes. Yes. Yes. 100%. As a teacher, I am in power over you by design. I will absolutely fight for you. And the ways in which we can shift that focus because children don't always need to hear hero. They need to be the hero ways in which they can do that and the disruption of that, that teaching them that these systems are wrong as opposed to you are wrong.

01:49:33:06 - 01:49:42:11

Trina Allen

Telling them outright took us all the time. I don't believe in this. Yeah I think that that matters.

01:49:42:13 - 01:50:01:21

Erin Croyle

One, I think too I mean, there's so much here, Trina, even as parents, because we've been raised in such a segregated, ablest world, even as parents, even as someone who loves someone and thinks of our children with disabilities as the best thing in the world and thinks that they think.

01:50:01:23 - 01:50:02:20

Trina Allen

Yes.

01:50:02:22 - 01:50:23:08

Erin Croyle

The best of them, I sometimes underestimate my son. And I have to remind myself, right, so to speak, to him like a 14 year old, because his expressive language is not there. But my gosh, his receptive language is is there. Yes. And he gets it and they get it and they want to know.

01:50:23:10 - 01:50:24:22

Trina Allen

brilliant. Yeah. Yes.

01:50:24:24 - 01:50:46:02

Erin Croyle

You're working for them and you're on their side and they want to be taught things. I mean, I see people. Yeah. Because my son doesn't speak. And by the way, I talk about my son as an example, but I'm speaking for all kids. I do this podcast for every one. I want to change for everyone, but I'm not going to give examples of other kids because it's not okay.

01:50:46:02 - 01:50:58:23

Erin Croyle

Yeah. So I think that's so important to point out to folks, This is not about me making the world better, so my son gets what he needs. This is about using the examples so we can all work together to make the world a better period.

01:50:59:00 - 01:51:03:19

Trina Allen

And that's the only way it's going to be better for your son. Our liberation. We're tied together. Yeah. Yeah.

01:51:03:21 - 01:51:24:08

Erin Croyle

Exactly. We talk around our kids like they're not there because they don't speak as much or they communicate differently. And I think that that is one of the main many, many, many reasons inclusion is so important because they just need to know that they're part of it. They're part of the conversation representation being at the table. Yeah, they get that.

01:51:24:10 - 01:51:50:00

Trina Allen

I totally agree. It's so hard too, because I think once we start letting go of this idea of what a person should look like should be like, I get upset on this age appropriateness sometimes when people say, I'm going to talk to him like he's 14. And then when you're talking about someone who has really high support needs right, everyone is like, well, that doesn't work.

01:51:50:04 - 01:52:11:08

Trina Allen

And it's like, No, wait, I'm going to talk to him, who he is, where he is. I'm going to have joint attention with him. I'm going to figure out the ways in which he communicates and I'm going to mirror that back to him and I'm going to take his lead on that. And I'm going to presume competence. And if I don't know if he understands a concept or not, I'm an error on the side.

01:52:11:08 - 01:52:39:09

Trina Allen

He does. That's the presumption of competence. And if my conversation doesn't benefit in any way, I'm going to continue to figure out what his responses are or his initiations of conversation are so that wherever he's at and whatever he wants to talk about, that's centered because the initial assumption by most people is it doesn't pertain to him because we've segregated.

01:52:39:11 - 01:53:11:11

Trina Allen

So he's not even part of the conversation. And then the first part is placement. Like, we'll let you sit at our table, we'll let you yeah, we'll let you. And then it's going to be like, Well, yeah, and I guess you'll need a few books to sit on so you can reach the, you know, whatever until we understand that that table has been built to deny him access, that he has to be the one to build his seat at that table that fits him, build his seat at that table, that helps support everyone else around him.

01:53:11:13 - 01:53:36:23

Trina Allen

That's where it's at. It's not just placement. And it's not just presumption of competence. It's all of those things together with and understanding that he is belonging. That's so hard to produce when like your hands are tied and the tools or whatever, but the least that's the least we can do is the least we can do is listen.

01:53:37:00 - 01:53:38:24

Trina Allen

Right. Listen to him.

01:53:39:01 - 01:53:43:00

Erin Croyle

Yeah. And take the time to listen. Because you.

01:53:43:00 - 01:53:44:23

Trina Allen

Have forgotten. God.

01:53:45:00 - 01:53:58:21

Erin Croyle

You have to listen differently and just use a different set of skills because it's it's a different conversation. You have to connect with a lot of people before you can learn how to listen to them.

01:53:58:23 - 01:54:22:20

Trina Allen

Yes, I totally agree. Everything is so based on speaking like the verbal ability. Right. That's what we think. That's what we believe. But realistically, we do so much other language and communication. So much of the ways in which we interact are not anything about that. But we forget that we're we're talking to disabled folks who are not speaking, right.

01:54:22:22 - 01:54:45:17

Trina Allen

It's like we all of a sudden assume that the words aren't there, that the expressively isn't there. It's like we can't have this interaction. And you're like, what? Like 90% of what we do isn't even that big, so why would it matter so much? But it does. And so that deep listening and that deep understanding and trial and error try five different language systems.

01:54:45:17 - 01:54:50:06

Trina Allen

And if they don't work you trying. But it's not giving up.

01:54:50:08 - 01:55:10:05

Erin Croyle

It's not. And I think too, you know, so often we say behavior as communication and yeah it is except that what is behind the communication and what else is going on. Right. When we think about what our kids are up against and the able is that they experience I think in a good example is in the medical community.

01:55:10:11 - 01:55:10:20

Trina Allen

Yeah.

01:55:10:20 - 01:55:17:20

Erin Croyle

You know just finding an eye doctor. Right. That will actually take the time.

01:55:17:22 - 01:55:18:06

Trina Allen

yeah.

01:55:18:07 - 01:55:40:19

Erin Croyle

They could be related to the fact that even though they have glasses, maybe their eye doctor really wasn't doing due diligence to treat them right. Or the fact that like again, my son has had hearing loss, but it went undetected because the first audiologist was ablest and said it's okay if you could hear out of one ear and was willing to just let you.

01:55:40:21 - 01:55:41:03

Trina Allen

Right.

01:55:41:05 - 01:55:53:10

Erin Croyle

And then the school before he even had a hearing aids, the school back in Northern Virginia claimed that they didn't use FM systems, which I don't know, a school that would not use those extra things.

01:55:53:10 - 01:56:16:13

Trina Allen

They didn't have them, they hadn't done it yet. Means they can't they Right. I just I every single one of those I can say Yes. My daughter, I wasn't there. Thank God. But my partner took my daughter to an audiologist who refused to speak to her. But totally talked to my partner. And Erin was like, you know, you could ask her.

01:56:16:17 - 01:56:35:10

Trina Allen

At first it was like, I'm going to gently lead you to this. Clearly you've been raised in the segregated society. And then it was like, I don't know, ask her, you know, like, I don't know. Ask her. I don't know. Ask her. I don't know. Ask her. And the fact that you couldn't take that, you know, like is just painful in itself.

01:56:35:12 - 01:56:59:07

Trina Allen

And then when to get real, like when are they doing it? Okay, well, this is more than just this is more than just ignoring her. He's being made at this point. He doesn't want to he doesn't want to start knowing when those things happen and then knowing if that audiology report was any good. And now medical decisions are being made off of whether she has surgery or not.

01:56:59:09 - 01:57:07:21

Trina Allen

Right. Then we could talk about what all the ablest things in regards to that, because she has to be in a hospital and have surgery, you know, all the all the things. Right.

01:57:07:23 - 01:57:09:24

Erin Croyle

But it is all related.

01:57:10:01 - 01:57:33:21

Trina Allen

It's all related. It's all related and every single one of those things that you just mentioned is same. And it cannot be recapitulated over and over and over and over and over again unless that's the way it's meant to be. Right? We couldn't live in a racist society where all these things keep happening, keep happening, keep happening unless that was by design, Able is and doesn't accidentally happen because of bad players.

01:57:33:23 - 01:57:50:11

Trina Allen

There are bad players, there are bad apples. There are many people we can talk about that. That's a very small percentage of what is actually happening, right? It's by design. That audiology report is really expensive if he gets what he needs. Yeah.

01:57:50:13 - 01:58:02:05

Erin Croyle

It is. It is. But getting back getting back to inclusion in schools, I think it's important to note that, yeah, you know, behaviors, communication, but we really have to push.

01:58:02:07 - 01:58:02:21

Trina Allen

Out to.

01:58:02:21 - 01:58:08:15

Erin Croyle

Understand the root of the behavior before we just assume that it is something. Yes.

01:58:08:15 - 01:58:39:22

Trina Allen

Thank you, behaviorists. And again, my early career I believed in ABA because I thought that was the standard. That's what I was told. I got out and then after about a few dozen, I better try harder. I learned very quickly that wanting that wanting someone's behavior to tell me what was in their soul, to tell me what support they needed is so wrong.

01:58:39:24 - 01:59:06:17

Trina Allen

And it would be so wrong to suggest that what I do is a direct relation of who I am right with all these constraints around me. And I think that finding out the why and finding out the need, if you look at a kid that has a behavior that you might not want to see, like fighting or something that is challenging to deal with, and you're only looking at it as a way to get them to stop biting.

01:59:06:17 - 01:59:28:07

Trina Allen

You are truly, truly, truly misguided. So the first step is trying to figure out what they're trying to tell you or whatever the communication piece that more than anything is why? Like what you're talking about, why is there that need in the first place? Is this environment super overstimulated or is it they're lonely or is it like that real human need?

01:59:28:07 - 01:59:41:21

Trina Allen

And the assumption, though, is that both, especially folks with intellectual disabilities, folks, don't give them access to human emotion. It's not just presumption of competence, it's presumption of humanity.

01:59:41:23 - 02:00:07:20

Erin Croyle

Yeah, I want to take this part of the conversation and go back to grade levels and inclusion because COVID aside, the pandemic and how that was for students with disabilities, I feel like inclusion is far easier in grade school. What I notice in my own experience and what I've heard from some of their peers is that when you enter middle school, it changes.

02:00:07:20 - 02:00:37:16

Erin Croyle

And that's what I saw with my own son in that you don't have one teacher. The classrooms are different. It's harder. And between that, my son experienced anxiety so extreme this past school year that he refused to go to classrooms and we were having him do General Ed. And what's interesting in the school district that Trina and I are both in is you can have your child participate in Gen Z if you advocate with the IEP to do that.

02:00:37:18 - 02:01:01:21

Erin Croyle

But there is one school that has something that's called a community based classroom, and it is it is more of like a cohort model that, you know, you have students with more significant needs who have to basically say, we're going to go off the standard diploma track to go into this classroom, which is a whole other can of worms that is just ablest and gut wrenching.

02:01:01:21 - 02:01:02:16

Erin Croyle

But anyway.

02:01:02:17 - 02:01:06:14

Trina Allen

Yeah, it's illegal. It's a legal play. That sucks.

02:01:06:16 - 02:01:12:17

Erin Croyle

It sucks, right? Because it's basically saying that I'm going to lower my expectations because I see my child's needs now.

02:01:12:18 - 02:01:30:01

Trina Allen

Yeah. It basically suggests that folks who with an intellectual disability don't deserve a diploma, Right? Which means it means that a diploma is based on a very specific ideology of understanding and cognition, and that is inherently able.

02:01:30:03 - 02:01:31:02

Erin Croyle

Yes.

02:01:31:04 - 02:01:33:22

Trina Allen

And to sign that document, I.

02:01:33:24 - 02:02:06:12

Erin Croyle

Know it's hard and it's I get it makes me cry every time, because the systems force us as parents to take opportunities away from our children, to give them what they need in the moment. Yes, I think so many people go through this. I know of a number of parents who have children who stop working and are like full on tutors for their kids to keep them on that diploma track.

02:02:06:12 - 02:02:11:22

Erin Croyle

Yeah, I tried to help my son since he was two.

02:02:11:22 - 02:02:12:24

Trina Allen

With yeah, reading.

02:02:12:24 - 02:02:20:04

Erin Croyle

Programs, all sorts of things. The thing is, there's no cookie cutter like a kid with Down's syndrome is one kid with Down's syndrome.

02:02:20:06 - 02:02:21:06

Trina Allen

Thank you. Right.

02:02:21:12 - 02:02:45:23

Erin Croyle

Who is one kid with autism? Is CP. Like, he's. He's brilliant and he wants to learn. So what I experience this year is not only did he have extreme anxiety, not only do I know that probably a lot of his non-disabled peers in Gen Ed stared at him, and I know that some kids are nice, but I do know that other kids are not.

02:02:45:23 - 02:03:22:05

Erin Croyle

And Arlo has a 1 to 1, so at least I know that he was protected. But Arlo also is a human being who wants to feel successful and proud of himself. And so when you have a student who is at a grade level in grade school trying to do seventh grade math, I don't know as a parent where the line is, I find myself blaming myself when I think that our schools, once we get to a certain level, it's not parents failing, but it's our schools not offering enough options for kids with more significant needs.

02:03:22:05 - 02:03:38:13

Erin Croyle

Instead, they just shove them into a cookie cutter classroom. I don't know. I guess I don't even know what my question is. All I know is that they reach a certain age and there's no choice anymore. There's no other option anymore.

02:03:38:15 - 02:04:06:00

Trina Allen

Right. Okay. So first off, I specifically in this situation, I want to commend you for doing the deep listening that your child with. It is so important that we do that. So while we're on the fight for inclusion, it cannot be on the back of our individual child. And listening to what he needs in the moment, listening to him is the biggest fight of Abel's that you will ever do with him.

02:04:06:04 - 02:04:35:02

Trina Allen

He told you what he needed. You listened so good. Good for you. That is what a mom does. And the issue of what needs to happen is that that math class needs to not be based on an outcome of these particular things, that math class needs to be structured. These are the standards and every single kid in it is at a different place and it needs to be supported in that way.

02:04:35:04 - 02:04:56:24

Trina Allen

Do I think it can be done? my God, Math is like the easiest. You know, it becomes a more complicated in like history and English, but it doesn't have to be if the design is universal. Now, that's a lot of curriculum, though. That's a lot of things that need to be made and change, and that curriculum needs to be not adapted for your son.

02:04:57:01 - 02:05:20:22

Trina Allen

That curriculum needs to be created within and created with the kid at a different level and created with a kid at the different level. And it created with a kid in a different level. And it needs to be individualized. And that is doable with time and space.

02:05:20:24 - 02:05:50:05

Erin Croyle

I want to stop right there so you listener can let those words resonate. Listening to your child is the most important thing you can do to combat ableism. I learned so much from this interview about inclusion, about ableism, about what we can do to effect change, and about myself. That's why this episo de needed a sequel. I didn't want to leave anything on the cutting room floor.

02:05:50:07 - 02:06:16:10

Erin Croyle

In part two, Trina breaks down how schools can create inclusive curriculum. The able As I am, we experience from other parents and how we can help shift mindsets and the equally important fight of inclusion outside of academics. You don't want to miss it, so be sure to share subscribed, like follow or whatever it is you need so you get a ping when this show drops.

02:06:16:12 - 02:06:23:13

Erin Croyle

This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

Looking to feel better? Want to help your children feel better?

It might be time for a detox. And the one we're talking about actually works.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

SHOW NOTES:

Details on the United States Surgeon General's Advisory About Effects of Social Media on Youth Mental Health.

Surgeon General Dr. Vivek Murthy's Op Ed Essay on why he's calling for a warning label for social media.

Here is a full review of the book The Anxious Generation by Jonathan Haidt.

Looking for ways to protect your family when they are online? Check out Erin's article on how to make that happen: Time for Some Screen Cleaning.

Want to share your own experiences attempting a digital detox? Send Erin an email!

TRANSCRIPT:

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement and Lisa's Partnership for People with Disabilities.

01:00:34:17 - 01:01:06:12

Erin Croyle

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating of the tough stuff for so many of us. Everything feels harder than it should lately. Most everyone I know is just sort of getting by. That whole living your best life vibe that we had going around several years ago is mocked in a lot of circles.

01:01:06:14 - 01:01:22:15

Erin Croyle

So what's going on and what can we do to change it? Dare I say, a detox is in order and the one I'm recommending is something virtually everyone needs.

01:01:22:17 - 01:01:46:01

Erin Croyle

Is anyone okay right now? I'm living in this fog that's just clinging to every part of my being. My brain, my body, my soul. It lightens now and then and even lifts for a bit once in a while. But most of the time, it's so dense. I feel it pulling me down. When I talk to people close to me, most of them are in this metaphorical fog too.

01:01:46:03 - 01:02:10:05

Erin Croyle

I'm sure that some of what my age said is feeling is partly part of middle age, but I see it in my children and other kids their ages. I see it in. I see it across the board. This is an unprecedented mental health crisis that we're in. Our whole country is living under a heaviness like never before. So how do we feel?

01:02:10:05 - 01:02:39:01

Erin Croyle

Better. Look, I'm a journalist, not a doctor. Over the years, I've read, listened to, watched and or tried practically every bit of healthy living advice out there clean eating, running, tracking macros, fitness watches, apps, sleep hygiene, skipping breakfast, and sometimes lunch, also known as intermittent fasting. And even though I know that they're ridiculous, I love the idea of a detox.

01:02:39:03 - 01:03:12:01

Erin Croyle

The problem is none of them work. Even if I feel better for a little bit once, whatever I've cut out comes back into my life. All that work is for naught except for one. As my daughter would say. Drum roll, please. The Digital Detox. My first true digital detox happened by accident nearly a decade ago. We were on a family vacation in Michigan's Upper Peninsula and we had absolutely no service.

01:03:12:03 - 01:03:41:09

Erin Croyle

So imagine a week without a ping, a ring or a vibration interrupting a darn thing. There were no new notifications on social media. I didn't have the ability to post anything and therefore there was no need to see if there were any reactions. I didn't have any breaking news, no texts. It was amazing. That week was transforming. We live in an era of information overload that is beyond comprehension.

01:03:41:11 - 01:04:15:03

Erin Croyle

The only way to realize this is to pull yourself out of it. Pretty much everything you pull up on your phone is designed to get you to use your phone or that app or that website even more. This podcast, same thing. Every entity has their own reasons to get you to go down the rabbit hole. Now, for the work I do, it's so that people with disabilities and their families, whether it's ADHD or cerebral palsy or mental health or Down's syndrome or whatever, it's to have meaningful content with relatable stories that we can all listen to.

01:04:15:05 - 01:04:44:08

Erin Croyle

It's to connect people through digital media or in person, because this experience can be so isolating. It's providing information and resources for people with disabilities and their caregivers. It's collaborating with professionals and community members to make the world a better place for everyone. Ours is a well meaning rabbit hole, as are many others. But there are plenty of other holes that we fall down, and they range from harmless fun to vapid to downright dangerous.

01:04:44:10 - 01:05:16:17

Erin Croyle

Now, as an adult, I'm aware of the social media suck. My children, however, are in defiant denial of the pull it has on them. I finally have some research to back up my concerns. Our surgeon General, Dr. Vivek Murthy, is calling for a warning label for social media platforms. He points out that it's clear that it's a contributor to our mental health crisis and that we have to act now, even though the information we might have is imperfect.

01:05:16:19 - 01:05:46:04

Erin Croyle

In his latest book, The Anxious Generation How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness. Social psychologist Jonathan Haidt demonstrates the direct correlation between the introduction turned widespread use of smartphones. Social media, video games and other online platforms to the increasingly worrisome rise of the mental health crisis that we've witnessed over the last decade plus.

01:05:46:06 - 01:06:17:23

Erin Croyle

He does this using copious amounts of research. I'll put the links to the Surgeon General's initiative and more about the book and its author in the show notes. Reading his book confirms so many things that I've heard anecdotally from other parents and educators, particularly the term forever elsewhere. It's how they describe children today, especially in school, where they should be engaging and interacting, but they always seem sort of absent.

01:06:18:00 - 01:06:45:12

Erin Croyle

If you talk to educators who've been in the field for a while, they'll tell you they see a dramatic change in students today and they'll describe something that sounds just like that forever elsewhere phenomenon. It's really interesting to me how our society puts Steve Jobs on this pedestal because he created the iPhone and the iPad and so many people just hand their children these iPads and kids have their own tablets.

01:06:45:14 - 01:07:14:00

Erin Croyle

But Steve Jobs wouldn't let his kids use either of these devices in their home. Bill Gates talked about how he limited screen time for his own children. So our tech leaders know about the dangers. And we now have plenty of evidence that our social media companies are in the business of creating addictive platforms to draw us and especially children in to be heavy users.

01:07:14:02 - 01:07:45:13

Erin Croyle

I mean, if you think about it, we are creating content and making them money, most of us, for free. Now, I know it's hard because it can be so much fun and it connects us with people that we know. But I don't know when you think about it, do you really need all that connection? And when I look at all my friends on Facebook and Instagram, these hundreds of people, I mean, no offense to many of you, but do we need to know what's going on in each other's lives?

01:07:45:15 - 01:08:26:12

Erin Croyle

Do I really want to be connected to my entire graduating high school class anymore? I'm 46, and the way that our online interactions impact our in-person interactions is palpable. It's desensitized us to being humane and empathetic. It's so easy to write a flippant comment on someone's post that we would never dream of saying to that person to their face.

01:08:26:14 - 01:09:22:03

Erin Croyle

It's impacting humanity. It's impacting our caring, our kindness, our tolerance. We really need to look at that. Beyond that, though, just that constant stimulation, we aren't even aware of what it's doing to our brains. But what I can tell you from my own experience when I do quote unquote detox or make intentional efforts to not have my phone or not be online or not check anything, I feel better when we're in the throes of the busiest times of the year and you get the vibration or the text or the ping.

01:09:22:05 - 01:09:52:00

Erin Croyle

It can just set you off. It's impossible to relax because we are constantly interrupted and there's a sense of urgency that we never had to deal with before. Someone texts you and they expect to have the response right away. What is that doing to our nervous system? Could part of this be why we are all so tapped out?

01:09:52:02 - 01:10:28:21

Erin Croyle

A lot of people like to blame the mental health crisis on the pandemic and the isolation we experienced while we were figuring out just how contagious and awful COVID is. In what in that time, I know that I saw my own children grade school age children, online hours every day. And what I can tell you is even my youngest, who was a kindergartner at the time, was able to circumvent so many safeguards to just go on to YouTube.

01:10:28:23 - 01:10:54:16

Erin Croyle

These were school devices and they could figure out how to skip school at home. It advanced the ways that they knew how to work the systems. I hate Chromebooks, but the schools are relying on them now. How are we going to figure out how to undo some of this to move forward? I'm not sure, but we have to.

01:10:54:18 - 01:11:28:02

Erin Croyle

Now, I know it's not so simple, and especially when it comes to having children with intellectual and developmental disabilities. Listen, I'm not perfect. I get it. I view screens. I will still use screens. My son is home sick today and is watching TV right now. Because what am I supposed to do? Caregiving is so hard and so isolating at times that letting our children use a screen is the only way to get through the day.

01:11:28:04 - 01:12:04:05

Erin Croyle

But we don't know the consequences yet. And there's so little research and understanding about what's going on in the brains of everybody, let alone people who are neurodivergent and or intellectually and or developmentally disabled. Think about it. There's just so little research period for anyone other than, you know, certain demographics. And so now we have this technology that we know, but now we have research and confirmation about how dangerous it is, But we don't have any clue yet how dangerous it is.

01:12:04:05 - 01:12:38:20

Erin Croyle

And we might never. For children with intellectual and developmental disabilities. I see this with my own children and their peers. My oldest has down syndrome and ADHD, and there's virtually no research on that particular co-morbidity. Yet anecdotally in my own circles, it's an incredibly common thing to have both Down Syndrome and ADHD right now. Combine that with the fact that we're just at the tip of the iceberg of understanding how incredibly detrimental the recreational use of screens are for children.

01:12:38:22 - 01:13:08:03

Erin Croyle

And if we're being honest with ourselves, is the screen use we consider necessary or educational? Truly, that I've heard some educators mention that the popular math learning game prodigy, the online one, is pretty much garbage. And I know personally that it sucks kids in and that there are upgrades that children beg parents to buy. The line is purposely blurred between what is actually educational and useful and what is recreational.

01:13:08:05 - 01:13:45:16

Erin Croyle

And that line is intentionally blurred to keep children and adults locked. In the last decade, we've been indoctrinated into having our lives completely online, and it's going to take a while to undo that. I see it with myself. I'll just read news on my New York Times app and go down there Rabbit hole, and suddenly I find myself going from the latest in politics to what's happening in the Middle East to a food article, to an advice column to their gains.

01:13:45:16 - 01:14:12:19

Erin Croyle

And all of a sudden an hour's gone, an hour of my day is gone and there are not enough hours in the day. And that's me, an adult who understands this and can say, gosh, I need to do better. But then I see what happens to my children, all three of them. All they want is to watch something or YouTube or a phone or a tablet.

01:14:12:21 - 01:14:48:19

Erin Croyle

Just screen. Screen. Screen, screen. Screen screen. My oldest son has experienced so much anxiety and will talk about how he doesn't feel good and whine and even cry asking for YouTube. And because he has Down syndrome and because it's so hard to make friends and because this world is just so hard and ablest and tough. If that brings in joy, I want to give that to him because so much of his life is so hard.

01:14:48:21 - 01:15:12:05

Erin Croyle

But then I see what that spiral does to him and I don't know what to do. And what's even more perplexing is when I expressed concern that part of this might be related to him just kind of really wanting to be on a screen all the time. Even his doctors say, well, if that makes him happy, then maybe that's okay.

01:15:12:07 - 01:15:37:20

Erin Croyle

But every part of my being tells me I'm wrong. Yet getting him out of that cycle, even in my own home, is virtually impossible. I mean, just going to try to take YouTube off of the TV is really, really hard. I have an article on that that I'll put in the show notes because I did do some research on that.

01:15:38:01 - 01:16:08:19

Erin Croyle

While we were quarantined during the pandemic, just to help not have to monitor my children all the time and make sure they weren't watching things. But that's the thing. Even with restrictions in place, even with parental safeguards, it's a toxic rabbit hole that unless you're constantly monitoring your kids, you're not going to know what they're doing. And these computers that the school gives them, that they're supposed to do their homework on.

01:16:08:21 - 01:16:34:18

Erin Croyle

It's mind boggling to me that that's the expectation because I know I'm going to have to stand behind my kids to keep them off of YouTube, to keep them on task. Why are our structures set up like this? We need to undo them to help our kids. It's time for us to take control and turn this around for ourselves.

01:16:34:20 - 01:17:04:06

Erin Croyle

We cannot change the fact that we live in a digital world. And why should we? There are a lot of benefits, and now that we know the dangers. It's time for us to establish boundaries for ourselves and our children. Now, like I said, I'm not a doctor. I'm not a digital expert. I'm a journalist. And what I've gathered from the legitimate sources that I use, which again, I'll put in the show notes, there are some things we can do first.

01:17:04:07 - 01:17:35:21

Erin Croyle

The actual detox. This isn't easy, and in some cases it's not possible to do it purely right. We have work, our kids have school, whatever, but if it's possible, turn off your router for a weekend and just exist existing quiet or just play some music, but just chill it out. If you can extend that time for a longer, go for it.

01:17:35:23 - 01:18:05:05

Erin Croyle

If it's not necessarily feasible for your lifestyle because you have to work constantly like I do. Shut it all down when you don't have to do those things. Take out the recreational, take out anything that is not a necessity. Even if a detox isn't possible, we can implement things in our day to day lives that can shift the way that we use smartphones and screens and eventually transform it.

01:18:05:07 - 01:18:32:04

Erin Croyle

We're not really made for that. Think about it Having a device that can give you access to anything 24 seven that you can keep in your pocket is not natural, and it takes us away from interacting with people. And I don't mean to sound ableist because I know in some cases those phones or that kind of access is the only way we do interact.

01:18:32:04 - 01:19:01:12

Erin Croyle

So there are differences. And that's what I mean by the benefits of this, right? Nothing is black and white. Everything is gray. But for our own well-being, we need to start limiting our use as much as possible. Really look at the notifications you get and think about if you need them in. Turn off what you don't need. Because every time you get that ping, every time your kid gets a notification that they got a like, it just sets off something.

01:19:01:12 - 01:19:29:13

Erin Croyle

Their brain. It's a distraction. It takes us out of the moment that we're in. We're forever elsewhere. We need to start challenging the expectations that we should always be available. We're not doctors on call. We're not firefighters that need to come in for an emergency unless we are right. But seriously, challenge those expectations, because the more that we do, the more that that will become a norm.

01:19:29:15 - 01:19:57:12

Erin Croyle

Set boundaries and expectations. If you're anything like me, I can't necessarily turn my text and ringer off because I need to be prepared if someone in my life needs me, like my mom or my son or something like that. So I can ask others to please not call or text in these hours. And when I'm awake and I can see my phone, I can turn the volume off, focus on what I'm doing and check my phone when I want to.

01:19:57:16 - 01:20:23:06

Erin Croyle

Instead of having my phone check me and buzz me or vibrate me or whatever and examine your own recreational screen use and cut it down. A lot of us get reports on our phones that tell us how much time we're spending. Really look at those and say, Do I need to do that? I was shocked that I was spending 5 hours a day on my phone and then I saw that most of it was music from playing music in the car or wherever.

01:20:23:08 - 01:20:47:02

Erin Croyle

So I didn't feel so bad. But really think about how much time you're giving to this endless void of social media that is completely pointless. Do you need to be on there or can you actually spend time with the people in your life and reconnect or make a phone call and call a friend? We need to start setting firm boundaries for our children.

01:20:47:04 - 01:21:26:20

Erin Croyle

Their brains are not developed enough to understand what these devices are doing to them. Their phone based life is taking them out of people based living. Think about it. Do our children really need their own tablets? Do they really need their own smartphone? I remember when again, my kids have three kids in diapers. It was so hard and I would occasionally go to a restaurant after like my son's doctor's appointments and take them and just to get through it, I would give one of them a phone and they would share it.

01:21:26:20 - 01:21:47:13

Erin Croyle

And then somehow you get a new phone and you have a phone that is just kind of there. And so I was like, All right, well, I'll try this and let one kid have one phone and two kids share a phone and they started fighting and crying about it at the restaurant. And I realized this is ridiculous. It's not sustainable.

01:21:47:15 - 01:22:16:03

Erin Croyle

It's not okay. They're not learning how to interact at a restaurant. They're not learning how to behave properly. And I took it all the way and they turned it around because they can, because you set expectations. And again, I don't mean to be able to say about that. I do recognize that for some children that environment is difficult and for some parents, they need to get out.

01:22:16:05 - 01:22:53:12

Erin Croyle

And that's the only way. And there's nothing wrong with that. But I'm talking about more generally, if it is possible, I get it. We're in this together. It's hard, but we also need to talk to other parents when we're helping our children. The wait until eight, meaning wait until eighth grade before you give your child a phone is a beautiful movement, but it's going to be really hard for parents to do it unless more parents get on board, because that whole What about or I'm the only one or everyone that me has won and it's really a struggle.

01:22:53:14 - 01:23:15:00

Erin Croyle

So if we could get behind the weight until eight movement and more of us could do that, we will help each other to help our children heal. I would go even a step further. We know how dangerous social media is. Why do we have more flip phones and basic phones for our kids for the 40 and over set?

01:23:15:01 - 01:23:39:01

Erin Croyle

I think most of us remember using pay phones to tell our parents we need them to pick us up. I think it's important that we really rethink this whole everyone needs a phone mentality. What if we started working towards having phones available for students to use so they can call home so they don't have to have a cell phone in school?

01:23:39:03 - 01:24:09:00

Erin Croyle

Why does that need to be a necessity? Why can't there be more communal phones so we can cut out all that excess noise that we know is harming our children? Another important thing that we need to remember is that we are in charge. Adults need to lead. We need to let children know that this might feel like a punishment.

01:24:09:00 - 01:24:33:05

Erin Croyle

This might stink. But guess what? I'm your parent. It's my job to take care of you. It's my job to keep you safe. And even though a phone or watching YouTube feels harmless to you, I know that it's not. And so this is in your best interest. And one day you will understand. For now, you can be mad at me and not like me.

01:24:33:05 - 01:25:02:08

Erin Croyle

And that's fine. We have to do that. We're going to have to accept that our houses are going to be messier. We're going to have to start letting kids go play outside by themselves a little more instead of worrying about sexual predators. Because guess what? Most of the sexual predators aren't at playgrounds. They're online signs. And they know how to reach our kids and manipulate them and groom them online.

01:25:02:10 - 01:25:42:24

Erin Croyle

You're better off sending your kid to the playground than handing them a smartphone and leaving them to their own devices. As consumers, we need to demand better choices. Parental safeguards are so confusing and so complicated that a lot of really smart parents I know have no idea how to set them up. We need to have better options. I cannot tell you how hard it is to find a simple watch that has no games that just allows my children to call or text.

01:25:42:24 - 01:26:23:24

Erin Croyle

And that's it. Maybe music. Why can't there be really simplified basic choices, especially now that we have so much evidence about how dangerous smartphones can be and how hard it is to set up systems that children can't work around. Why don't we take that work out of it and just give them less because they don't need it? Children and teens need to interact and play and talk and be outside and be together and learn how to be human.

01:26:24:01 - 01:26:35:03

Erin Croyle

Consumer voices are powerful, and when we start to demand what we want and need, it will start to be available.

01:26:35:05 - 01:27:19:14

Erin Croyle

We have to demand better of companies to protect our children and stop placing all of the work on us because it is not sustainable. And frankly, it's not possible. We also need to start leading by example. Put your own phone away. Listen to the people around you. It was funny. I was talking to my mom the other day, who's very old school and very wonderful, and she used to always complain several years ago about how my brother's on his phone or so-and-so's on their phone, and people are always on their phone.

01:27:19:16 - 01:27:52:06

Erin Croyle

And now I visit her, which is I get to only do a couple of times a year and guess who's on their phone? My mom. I'll literally be tr ying to talk to her in the morning and she's on games or on Facebook or whatever. Totally engaged and forever elsewhere. We have to lead by example. We have to be honest with ourselves about how addicting this is, even for grownups.

01:27:52:08 - 01:28:21:19

Erin Croyle

And think about that. Think about how addicting it is for our minds that are fully mature. And then look at our children who are being raised on these devices. They don't know any better. We need to go to the dinner table and not have our phone there. We need to watch a movie and put our phone away. We need to be present whenever possible.

01:28:21:21 - 01:28:47:07

Erin Croyle

You can't demand for your children to do it when you yourself aren't doing it. And look, I get it. It's hard. And taking screens away from our kids is going to make our parenting and our caregiving harder.

We have to work to change societal structures that have adapted shockingly quickly to the 24 seven information overload.

Even gas stations now have screens that start playing when you pump gas. I can't tell you how agitating it is to constantly have noise everywhere. I just think about how intolerant folks are these days to just kids being kids. I can't tell you how often I've gotten looks because my children are happily giddily goofing around in a very controlled way at maybe a waiting room at a doctor's office or at a restaurant.

And they get stares. And it's shocking to me because I want my children to learn how to interact and move. And I think we're just so accustomed to kids just staring at a screen quietly that we forget that people are supposed to be noisy. I think we need to learn how to be bored again. We all talk about mindfulness and meditation.

Well, guess what? Do you remember when we didn't have a phone in our hands all the time? And you can naturally have that just by waiting for the bus. You could take deep breaths. Now we're just on our phones. We're never spending any time, just naturally throughout our day, just being with ourselves. It is constant stimulation and we don't know how to just be.

Instead, we're taking courses and downloading apps to meditate. How about we just put our phones away and go sit somewhere or put some music on and take some breaths and get off the darn phone? I mean, I get it. I love guided meditation every now and then, but I also love not having my phone on. And I find that that is much more calming than a guided meditation will ever be.

But also, I just see the nervous system of my children, the constant need for something, and we need to just turn it off. We need to let people be bored. We need to let people learn how to twiddle their thumbs again, that calming sensation in our brain. It's really hard to find in a world that is constantly, constantly, constantly sending us notifications.

Finally, I think perspective is important. Are we in a mental health crisis? Yes. Is this an emergency? Yeah, absolutely. But we don't have to panic. We can start implementing small steps and supporting each other and working toward making this better. But we have to just start that movement. We can't sit and wait for the perfect plan or the perfect idea.

We can advocate in our own lives. We can advocate for our schools to stop allowing phones. It doesn't have to be black and white. It doesn't have to be all or nothing. We can start moving in the right direction with what we know now and figure it out as we go so we can start helping our children as parents.

We can send our kids outside as communities. We can support that and encourage that. Instead of judging or calling authorities, if you see a kid walking down the street, ask a question and make sure they're okay. Think about the things that are attainable in your inner circle and how you can help others as your circle expands. So if you have children like I do, who have neurodiversity and really need dopamine, and if they're not watching TV, they're going to be getting into some stuff.

Set up a corner that is where they can find all the crafts or all the things they need. Set up towels when they're going to make a water mess and just be prepared. We need to remember what childhood actually looks like. It's not quiet and clean. It's chaotic and loud and messy, and we need to allow for that because that's how children learn.

Siblings do argue. There is yelling. There is crying. There's laughing. There's noise. Let it be messy. Send them outside. Set up what works in your house. Take away devices if possible. If not, explore upgrading your router so you can monitor through there. So if your child has to do homework on a Chromebook and you don't want them up at midnight on YouTube, there are workarounds that can help you think about getting a landline back in your house and letting your kids use that to call each other and arrange to meet up.

Set a list of phone numbers on your refrigerator so they can actually call and get in touch. We really don't know where they're going online. I would rather know that they're at the playground or even at the corner store. Getting a bunch of candy would be better for them than spending hours in the endless void of garbage that they can find online.

Open up the dialog about how social media impacts them. Talk about the research that's out there and why you're concerned. It's not going to be easy to make these changes, but in the long run it will be worth it. We really have a chance to turn this around for the next generations and for ourselves. It's amazing how much better you feel in a matter of time.

The less time we spend online, the more time we have to actually be with each other, the more time we have to move and get fresh air and experience life. The better you feel. In general, it improves our entire quality of life. To just be present in our minds and be available to those around us in a way that's not constantly interrupted, forcing us to be forever elsewhere.

Thank you for listening. Please rate review, share and subscribe and tell me your detox goes. I'd love to follow up on this episode and hear from others who are bucking this new norm and trying to cut back on the screen use in their lives. I've also got plenty of other stuff coming up in the coming months. This is The Odyssey.

Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.