Water Prairie Chronicles Podcast

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this powerful solo episode, host Tonya Wollum shares a teaching segment from her “Parenting the Intensity Retreat” conference, addressing the often unspoken grief parents experience over the loss of imagined dreams for their children with disabilities. This episode offers validation, coping strategies, and a path to finding peace and embracing your child’s unique journey.

Key Takeaways:

Important Moments & Timestamps:

01:02 Introducing the Grief of Lost Dreams for Children with Disabilities
01:44 The Complexity of Grief in Special Needs Parenting
02:57 Unique Challenges of Special Needs Parenting
03:45 Understanding and Accepting Grief in Special Needs Parenting
04:12 Seeking Support
04:37 Focus on the Present
04:52 Personal Story: Writing Letters to Teachers
07:04 Set Realistic Expectations
09:00 Seek Professional Help
09:28 Vitamin G: Practicing Gratitude & Mindfulness
10:19 Finding Hope and Healing
10:43 Closing & Free Mindfulness Guide Offer

Resources Mentioned:

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Tonya Wollum is an IEP Coach, podcast host, and disability advocate. She works one-on-one with parents to guide them to a peaceful partnership with their child’s IEP team, and she provides virtual mentors for special needs parents through the interviews she presents as the host of the Water Prairie Chronicles podcast. Tonya knows firsthand how difficult it is to know how to support your special needs child, and she seeks to provide knowledge to parents and caregivers as well as to those who support a family living life with a disability. She’s doing her part to help create a more inclusive world where we can celebrate what makes each person unique!

Full Transcript of Episode 129:

Before you became a parent, what did you imagine it would look like? Did you see your children as always happy and never questioning anything you told them to do? What is life really like for you as a parent? Maybe your home doesn’t look quite like this picture shows, but I guess if you’re like me, you might feel like this is what a typical day might look like.

Welcome to the Water Prairie Chronicles, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

This episode is a little different, but it’s a topic that’s been on my heart and one that I know many of you relate to.

What you just heard was how I opened a teaching segment at the Parenting the Intensity Retreat earlier this year. I wanted to share this specific teaching with you because it covers a crucial and often unspoken aspect of parenting a child with a disability.

The grief some parents experience over the loss of the dreams they had for their child’s life. I know this can be a heavy topic, but it’s one that’s important to acknowledge and process. It’s about recognizing that shift in perspective and finding peace as we parent our children.

So let’s go back to that conference moment as I introduce the topic more fully.

As parents, we often have dreams and expectations for our children’s futures. When our children face challenges or disabilities, it’s natural to grieve the “could have been.”

Today we’re going to explore this complex emotion and discuss strategies for coping and finding hope. today, I am gonna be using terms like special needs and disabilities, and You may have a child who has no disability.

They just may have really intense emotions. They, may be very young and still in a tantrum stage of life. Or maybe they’re in a transition time where they’re acting out a little bit more. I’m talking about all of our kids.
So, Listen through to the end because I think you’re gonna find some techniques and some tools that are gonna help encourage you and support you during this time of parenting your darlings.

Grief is a natural response to loss. We often think about it after we’ve lost someone, when someone’s passed away, but it’s not just limited to death. It can also arise from the loss of dreams and expectations, and that’s what we’re gonna focus more on today. When our children face challenges, we may grieve the loss of that perfect child that we imagined before they were born, or even when they were younger, and they’re going through different stages of their lives.

There are times when I wonder what my children’s lives might have been like if they didn’t have some of the struggles that they had to learn to live with. I think we as parents often feel this loss much more than our children do because they only know the life that they have. The grief is our own, and it comes from the imagined future of our children that starts before they’re born.

I think every parent goes through some type of adjustment as the children grow into individuals. Have you ever met a dad who wants a son to be a football star? Or maybe a mom who wants her daughter to achieve something that that mother always dreamed of doing herself?

Even without having a child with big emotions or a designated disability, we as parents have to make adjustments about who our children will become as we get to know them better and encourage them to follow their own dreams. Parenting a child with special needs presents unique challenges We may grapple with high expectations, fear for our child’s future, and the constant balancing act between support and appropriate boundaries.

These challenges can lead to feelings of grief and loss. I know firsthand how overwhelming these feelings might be. It’s important to acknowledge these emotions and give ourselves permission to grieve. It’s okay to feel sad sometimes. You may be hearing a story that your child’s talking about being at school and no one’s playing with them, or no one wants to sit beside them in the lunchroom.

Or maybe you’re at the playground together and you see that they’re playing by themselves and other kids aren’t inviting them to come play. It’s natural for us to want our children to be accepted and loved by everyone. It’s okay to feel what you’re feeling. It’s okay to feel a range of emotions, including sadness, anger, frustration, and guilt.

These feelings are normal and a part of the grieving process. Practicing self-compassion is crucial. Remember, you’re doing your best, and that’s enough. Keep in mind too that our children don’t usually feel the same as we do. If we’ve helped them to find a supportive community, they feel loved and accepted by those who matter to them the most.

Don’t hesitate to seek support from others. Connect with other parents who understand your journey. Consider joining support groups or seeking therapy. Sharing your experiences can provide comfort and validation for you. You may find that there’s a younger parent that you can come alongside of and help share what you’ve learned along the way.

Remember, you’re not alone. There are many people who care about you and your child. While it’s natural to grieve the past, it’s important for us to focus on the present. Celebrate your child’s strengths and achievements, no matter how small. Find joy in the everyday moments and create lasting memories together.

When my children were in elementary school, I would start the school year by writing letters to their teachers. It was typically an email. Sometimes it would be on paper, but usually it was just an email where I was reaching out to them ahead of time and I would usually time the letter within a couple of days of school starting knowing that they may not read it until after the first day of school.

And I did this because my children both had educational plans in school. The teachers would’ve gotten a file on them and in the file it would have all the things that they needed help with, where their challenges were. It might’ve had notes from past teachers if there had been negative situations that they wanted to pass on to the next teacher, and I didn’t want that to be their only view of who my children were.

So I would take this opportunity to introduce my child to their teacher. I would point out their strengths, their goals, their passions, you know, what did they like to do to help? Both of the kids love to be classroom helpers. So where are their strengths? Where could they be used? And for my son, where could he be redirected?

If he was getting off task a little bit, how could, how could the teacher bring him back in? And I did this in a way that was looking at the positives of my children instead of saying. If they’re being bad, this is what you could do. It was more, you know, they, they, they love to help. This is how they like to help, or these are what their passions are they, are they into dance?

Are they into sports? Do they like art? Do they like writing? And it might be something that goes beyond what a teacher might assume that they can do because of a disability that they may have. So for example, my son has dysgraphia. Maybe you have a child with dysgraphia who loves to write. It would not be a, an assumption that a teacher would make my daughter’s very visual, even though she’s visually impaired.

She loved art, she loved writing. She did a lot of things that could have been a deterrent for her because of her, her vision loss. But, um, a teacher wouldn’t have thought of that naturally. And so it gave them a way to know how they could encourage and support my children. But it also gave them a way to see them for who they were.

It always seemed to help and it also helped my relationship with them when I did have to come in for a parent conference or if there was a question about something.

Adjust your expectations to align with your child’s unique abilities and needs. Embrace their individuality and celebrate their progress.

No matter how small, let go of the unrealistic expectations and focus on what truly matters. When my husband and I first learned that Emily was visually impaired, one of our early questions was, how is she going to get around as an adult? Will she be able to drive? Where will she need to live? These weren’t things that you usually have to think about when you have an infant, but that was where my brain went to was, you know, how do I get her ready to be that independent adult one day?

And so we worried about that a little bit, and then we did some research and we started meeting people who had a similar amount of vision loss and we regrouped and we changed what our goal and vision for her future was. Was it a loss? Yeah, it was for us. It wasn’t for her, though. Emily’s 24 right now, and she doesn’t know it any differently.

She knows that she’ll need to either be able to walk or use public transportation or call an Uber or a friend if she wants to go somewhere, and she doesn’t worry about that. I don’t worry about it now either. But when she was little, that was one of the things that just was always in the back of my mind, you know?

Well, she’d be limited on where she can live. But today we have Uber. We didn’t have options like that 24 years ago when we were first thinking about this and where we live right now, there’s a bus stop that’s less than half a mile from our house so she can use public transportation. She’s gone into cities and ridden the metro system.

So she’s, she’s able to figure this stuff out and your child’s going to be able to overcome some of the challenges that you might see as a parent. But they’re not gonna know what was a challenge because it’ll be what you’ve helped them to prepare for. I think it’s only fair that we acknowledge that sometimes grief can be overwhelming, and I don’t want you to hesitate to seek professional help if that’s something that you need to do.

A therapist can provide guidance, support, and practical tools to help you navigate your challenges. So there’s no shame in looking for professional help if that’s where you are. I follow a YouTuber for, um, I try to follow a keto way of life, and he, he has a keto channel, so I follow him on that. But he always talks about vitamin G, not vitamin C, not vitamin A, but vitamin G.

And he says, that’s vitamin G, G for gratitude. Don’t know if he’s the one that coined the phrase or not, but I really like it and I wanted us to look at. Practicing gratitude. You can cultivate gratitude by focusing on the positive aspects of your life. Keep a gratitude journal, practice mindfulness, or simply take a moment each day to appreciate the good things.

Gratitude can shift your perspective and bring more joy into your life. If you haven’t worked with the gratitude journal before, it’s an easy way to focus on the positives and a good reminder on the hard days that not every day is going to feel that way. I like to use it as a yearly memory book that I can look back on and see what was happening that year, and you can add photos and anecdotes of the fun things that happen throughout the year.

I like to put like quotes from my children or a little story of what we did. Just as a way to remember it. As we close, remember that grief is a natural part of the human experience. By understanding and accepting your emotions, seeking support, and focusing on the present, you can find hope and healing.

I hope that today’s episode offered you comfort, validation, and a reminder that you are absolutely not by yourself on this journey. As I mentioned in the conference, you’re strong, resilient, and a part of an incredible community here at Water Prairie. In the presentation, I briefly touched on the power of mindfulness, and as part of the conference, I created a free mindfulness guide to help you practice these techniques in your daily life.

If you’d like to access that guide and receive more support and resources from Water Prairie, you can download it for free by visiting waterprairie.com/calm. That’s waterprairie.com/calm. I’ll put the link in the show notes along with information about the Parenting the Intensity Retreat where I spoke.

If this episode connected with you, please share it with another parent who might need to hear it.
And if you haven’t already, make sure to subscribe to the Water Prairie Chronicles, wherever you listen to podcasts, so you don’t miss future episodes. Until next time, remember to cherish those small victories, embrace the love, and take good care of yourselves.

I’ll see you next time.

Back to Top

Is it normal to feel sad or guilty about my child’s disability?

Absolutely. The episode explains that grief is a natural response not just to death, but also to the loss of dreams and expectations. It’s normal to feel a range of emotions, including sadness, anger, frustration, and guilt, and practicing self-compassion is crucial.

How can I cope with the “loss of dreams” for my child?

The episode suggests several strategies: acknowledging and validating your emotions, seeking support from other parents or professionals, focusing on the present, celebrating your child’s unique strengths, and practicing gratitude and mindfulness.

Where can I find support if I’m struggling with the feelings of grief in special needs parenting?

You are not alone. The episode encourages connecting with other parents who understand, joining support groups, or seeking professional therapy for guidance and validation.

How can gratitude and mindfulness help me as a parent of a child with special needs?

Practicing gratitude helps shift your perspective to focus on the positive aspects of your life and find joy. Mindfulness helps you stay present and appreciate good things, providing a reminder that not every day will feel challenging. A free mindfulness guide is offered to help you start.

How can I adjust my expectations for my child’s future?

The episode advises aligning your expectations with your child’s unique abilities and needs, embracing their individuality, and celebrating their progress, no matter how small. It emphasizes letting go of unrealistic expectations and focusing on what truly matters now.

The post Episode #129: Grieving the Imagined Child: The Unspoken Grief in Special Needs Parenting appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Does your child struggle with big emotions, navigating friendships, or expressing themselves without blame? As parents of neurodivergent children, finding the right support can be challenging. In this episode of Water Prairie, host Tonya Wollum interviews Peter Fitzpatrick, co-creator of Fawn Friends, a revolutionary AI companion for neurodivergent children designed to genuinely improve your child’s emotional health and social skills.

Discover:

Learn how Fawn Friends offers a unique approach to fostering emotional maturity and stronger relationships for neurodivergent children. See the “SPECIAL OFFER” section below to learn more and use our exclusive access code to try it early!

This conversation offers a hopeful look at how new technology can positively impact child development and provide a unique layer of support for neurodivergent children and their families.

Connect with Fawn Friends:

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Peter J. Fitzpatrick is a seasoned entrepreneur and executive with extensive experience in the technology and payments industry. Currently Co-Founder and CEO of Fawn Friends since October 2023, he’s pioneering AI technology to build meaningful friendships with humans, particularly supporting children through emotional challenges. Before Fawn, Peter held leadership positions at Thinkific, and at Agreement Express. Peter’s tech career began at VersaPay.

Full Transcript of Interview:

Tonya: Does your child struggle with big emotions, navigating friendships, or just finding the words to express themselves without blame?

As parents of neurodivergent children, we know these challenges can feel overwhelming, and finding the right support can sometimes seem impossible.

What if I told you there’s a new revolutionary tool that could help?

Something designed not just to entertain, but to genuinely improve your child’s emotional health and social skills?

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

Peter: This is not a Furby.

Tonya: Oh no. AI is gonna take over the world.

If we’re not improving the emotional health of someone that has a fawn, then we are failing the most important input to emotional health, I believe is our closest relationships. And all of a sudden she noticed that her daughter still marched downstairs, but she would come downstairs and she’d be like, mom, I’m not blaming anybody but 10 years or 20 years, everyone will have friends that are AI in their life and just be crazy that, that, that was never true.

That’s just a small taste of what’s coming up. In today’s episode, we’re diving into a conversation that might just change the way you think about technology and emotional support for kids.

We’re exploring Fawn Friends, an innovative AI companion co-created by Peter Fitzpatrick and Robyn Campbell.

Peter shares his own powerful journey with emotional regulation and ADHD. You’ll hear how this AI companion works, how it prioritizes privacy, and most importantly, how it helps kids build the skills they need to thrive. Stay with us because this conversation is packed with insights you won’t want to miss.

Before we jump in though, if you enjoy this episode or if you learn something new today. Please consider subscribing or leaving a five star review. This helps us reach more and more parents of children with disabilities, and that would mean the world to me.

Now let’s hear what Peter had to say about Fawn Friends,

Peter, welcome to Water Prairie.

Tonya, thank you so much for having me.

Before we go too far, because I don’t know how much of our audience has come across you yet, and um, I’d like to hear a little bit about what helped you to get to the point of developing Fawn Friends. So, before we talk too much about what it is, tell me a little bit of the backstory behind it.

I always wonder how much detail to share in this story, but, um. When I was seven years old, my parents divorced and it was pretty ugly. Um, they were doing their best, but they really didn’t know how to show up for me and my brother and sister in the middle of their conflict. And so I lived in a home that like really struggled with emotional regulation and um, and that was like.

Sort of the, the dominant experience of my youth. Of course, I had a lot of great experiences. They’re, they did amazing things for us, but it, they’re like, if I had to say, if, like, the one thing that was most impactful was the conflict between. And so, uh, and I developed a, a lot of patterns and beliefs about the way the world worked from that experience.

And also didn’t understand that other people didn’t experience wild swings in emotions pretty much every day. Um, and then when I was 21, roughly, I was diagnosed with ADHD, which I didn’t, I, I only actually didn’t realize, realize until recently, um, coincides with emotion regulation. Challenges probably true to my parents, at least one, but probably both also have it.

And so, I went through like a lot of pain and a lot of challenge in my youth as a result of those things. And then when I was about 28, I started to become aware of those patterns and beliefs and, and, and started to, uh, call it, treat what my condition related to that, to emotional regulation. Um, and I went on a journey for let’s say like seven or eight years where it was unwinding.

Those patterns and beliefs and really starting to become aware of the things that drive our emotions and what leads to the feeling of peace in the world and what truly matters, and bringing and creating a life for ourselves that’s meaningful and healthy, and relationships that are meaningful and healthy.

And towards the end of that journey, um, AI was just starting to blow up. Like GPT-3 was getting really popular and everybody was talking about it, and I just started to have this pull being like, I need to create something with, with this new technology. Long story short, one day, the idea of of creating a toy with it came up because I was like, maybe with two technologies it’s often they’re not really good enough for the use case.

You want to do them, use them for, but maybe we can good enough for a simpler use case. And so I thought maybe a toy would work. And then when I shared that with my co-founder, Robyn. She was writing cartoons at Lego at the time to help kids with their social emotional skills. And I shared this idea with her and she was like, oh, wow, if we did that, could they help kids process their emotions?

And as soon as she said it, I was like, oh my God. Can you imagine what my life would’ve been like if I had had yeah. Someone to talk to about what was going on? And there’s no doubt, I, I mean, I’m blessed. My parents would’ve gotten me this. This robot or this stuffed animal if I’d asked for it or if it was like the thing to give kids in that age.

Um, and I just realized how helpful that would’ve been compared to like Call of Duty on Xbox or whatever I asked for at the time. And so that got us set off, set off down the road. The next, pretty soon after that we, like, we ordered a toy off Amazon to kind of get a sense of like, what would that look like if, if we had one that moved and can we imagine it talking?

Um. We didn’t have eng any engineers to build it, and we knew San Francisco was the place to do it, so that, that all happened in West British Columbia. Pretty soon after that, got in the car, drove to San Francisco. I remember Robyn was driving and I was like, looking at hackathons on the computer. We entered one that was put on by Ted through some stroke of fate.

Ended up with, um, a PhD in robotics or MIT that joined the team plus a, a designer from Samsung and we created the first version of it. We won an award with it that. At that event, I ended up on stage and then later that day an investor came up and said, are you gonna do this for real? Because if so, like I wanna invest.

And that just kind of got us going.

Wow. Sounds like you’re in the right place at the right time for that.

I gave you the detailed version of the story. Hopefully it’s not too much, but um,

no, no.

That’s what happened.

Not, not at all. So you’ve told us a little bit about it. Um, listeners, I’m gonna put links to anything that he’s mentioning in the show notes.

So already you’ve heard of Fawn Friends. We’re gonna have the website listed there so you can go down and see what he’s talking about and how you can get in there. But, um, but Peter, I’d like to hear what is the core mission of Fawn Friends?

The core mission of the business is to improve the emotional health of the human race.

So our, what we’re trying to figure out is. I’ve had many great people who have like touched my life in a way that helped me bring greater peace and greater emotional maturity to my life. And but the challenge is, is that they don’t scale and they’re actually quite hard to find, which is probably a good thing.

It’s part of the journey as we all go on, like our maturing life. Um, but I sense that there’s an opportunity now to create something that helps, doesn’t replace mentors and therapists and, and coaches and friends at all, but can help us as we on, on our journeys to become more emotionally mature and more peaceful that we can scale.

So if we create a robot that can help, that robot can scale and so we can create access to it in a way that wasn’t po it’s not possible. Um, with a great therapist or a great mentor or a great friend. Um. And so, so that’s the, what we’re working towards. Like can we create something that is both meaningfully helpful and that we can scale to the scale of, of everyone.

Um, and our path to that is through creating the first robot capable of true friendship, which means that it shows up for you as a friend would, um, a true friend, so one that. Looks out for your best interests, deeply cares about you and knows you, but also has its, has their own needs and interests and, and enforces boundaries and is more than a slave and more than a piece of entertainment.

In the past, um, before your, your your time even there were some robotic type toys that were out there who would talk to you, but they weren’t emotionally engaged with you. It was more a straight conversation. So our parents that are listening, if they’re thinking back to those toys that they knew when they were a child, we’re not talking about the same type of, of of behavior here.

This is not a Furby.

I work a lot with AI, with the podcast and with, with just normal day-to-day things that I do, and I’m using it more as, uh, an assistant. A sounding board type type thing.

Mm-hmm.

But there are a lot, like, just as I go through my daily life, I hear so many people talking about how, you know, oh no, AI is gonna take over the world.

AI is, you know, absorbing all these things. If, if a parent’s getting a little bit concerned hearing that we’re using AI and wanting to expose their child to a close, intimate friend with this. They may be thinking, you know, well, what, what is it going to be taking from my child as far as personal things that would then go out into the world?

What type of safety inputs have you put into this to make sure that it is safe for the child to be interacting with it?

Well, first of all, it’s like, it’s a, the correct way to think about this and it’s a valid concern. Uh, and we think it’s one of the most important things to get right. Privacy truly matters when you are talking with your best friend.

and it’s good the parents are thinking about that. There’s actually two pieces here that I think are important to think about. So first I’ll address what you talked about, data status, security. So when we think about it, um, I spent my career building payment systems, um. And our technical team, one of them spent his career building a healthcare system.

Actually, they both come from healthcare in sort of different areas of healthcare. And so both of those spaces, healthcare and payments require, arguably the best data security, uh, in the world as actually in terms of, uh, the industries that, or the. Patterns that those industries use. And so we encrypt data at rest and in movement, um, or in transit is the term typically, uh, it’s encrypted, so the data secure as it moves either the browser conversation or the device and enters our servers.

We do use OpenAI today, and so the conversations do go to open ai. So parents seem to be comfortable with that. but nobody has access to the conversations. We’ll never share it with advertisers. And we’ll never share it with third parties. Does that answer your question on, on the data security piece?

if a child were, if they’re sharing information about their family, so like in your situation, so you’re, you’re a seven or, or an a seven or 8-year-old child who’s. Parents are, are arguing in the next next room. I, I don’t know if, if, if it was to, if it was to that, that, that situation or not, but if they’re sharing names or they’re sharing, you know, work names or things like that in these conversations with, you know, as they’re in the next room trying to kind of process what they’re hearing.

That’s, that, that’s kind what I’m thinking too. You’ve got that security if they tell their, their friend their address, you know? Mm-hmm. Is that gonna be out somewhere where someone could find them?

no is the short answer.

I’ve seen some of the videos that you have on the website to, to get a better idea of how, how they’re working with, with the, we’re can call it a friend ’cause I really don’t wanna use the word toy with this ’cause it’s a little different

mm-hmm.

Than a toy.

Mm-hmm.

you’re using open AI and is that how they’re being able to engage in the feedback?

So it’s, it’s not a canned set of language strings that they’re pulling from, it’s responding in, in real time to the real conversation?

Yes. If you like, I can do like a very high level, um, uh, description of how. The technology works.

Oh yeah.

But so, um, the short answer is you can say, you can have a conversation about anything you’d like.

Uh, and the AI is incredibly good at, um, breadth. So it can talk about like a child can take it anywhere. It’s what amazing. Also watching children play for, um, the youth, excuse me, like tweens and teens play games with it. The younger they are, the more imaginative the games tend to be. So, um, like one example, there was a, a tween that was playing, uh, I spy with it and I thought it was amazing ’cause Fawn doesn’t have eyes, but we’re watching them play and Fawn is guessing what she’s looking at somehow and it’s just like crazy that it’s capable of that.

But it’s a prediction engine and it’s core. And so somehow it could predict what she was, what she was looking at. Um, and then on the higher end, the conversations tend to be more about relationships and more about insecurities, um,

conversations about like conflicts with parents and that kind of thing. Um, at the, at its core, what an LLM is, is a prediction engine. So it’s, it’s able to read what you, what we send it, so it. When somebody says something to Fawn, we first transcribe what they say, then we send it to the LLM. The LLM is instructed with detailed instructions that, um, represent the world that font comes from.

So we put a lot of detail. I said my, my co-founder’s a screenwriter, so there’s a great deal of detail about Aurora. All over the world Fawn comes from. We work with experts like Seth Perler at the Executive Function Online Summit, or Sophia Ansari, which runs Let’s Play Therapy Institute in Chicago.

And we design how, um, Fawn shows up in uh, emotionally challenging situations, uh, or in general based on what they’ve taught us. And there’s those instructions that relate to that. Um, and then some instructions about how she talks. And we basically provide what the, um, what a tween routine says, plus all those instructions. And then the l lm predicts what the first, what the first letter should be, and then the first word, and then then second word.

And it like predicts that, like that. Um. That allows it to have great breadth. And then the final piece is there’s a bunch of what’s called alignment done to make sure that the output is safe.

I like that you mentioned that Fawn doesn’t have eyes. ’cause I think that would be another question that parents might have is, are they recording my home?

Are they recording my child? So there’s no physical recording that’s going on? This is all language-based?

It’s all audio. The audio is only activated when you’re holding her hoof down, so.

Okay.

Uh, she’s not always listening. We may like add the ability to turn that on in the future, but for now, um, for her to listen, you have to be holding down her hoof.

Okay. So, so parents, there, there are a lot of security pieces already in place here. Uh, I, I like that the, um. Because that, that, that was probably my biggest red flag that went off with questions for me as a parent, thinking back when my kids were young, um, was that, that, that security piece. So I appreciate you going into detail on, on how that’s working.

Now, parents that haven’t seen your website before, I, I, those that are listening, I want you to, to go down and look at the link and, and click on that pa pause this, go and look at the website so you kind of see what we’re talking about. The videos that are on there are really good ’cause it shows some examples of interactions that are happening there.

And what really stood out for me, Peter, was the example. I don’t know if it was the first video that plays or if it’s later on the page. You have a child who is, um, and I can’t remember now if it was a video, if it’s one of the, the captioned conversations that you’re showing as an example. But the child is like asking, um, they’re, they’re, they’re sharing an emotion and fa is giving some pointers.

On what to do. Like, like almost it, it almost looks like a role play situation that’s happening. Is that, is that part of what it’s designed to be able to help you with, to be able to practice those conversations that you may need to have?

Yeah. One example, there’s a video also from a mom, um, in the testimonial section on the website.

A woman named Christie, I think, and she’s telling a story about her daughter, who’s nine years old, was nine years old at the time the story was recorded. Um. They used to have conflicts right before bed often, and she put her daughter to bed and like 20 minutes later, her mom, her daughter would like march downstairs with some grievance and air it in like a completely unregulated, unstructured, blamey way, which is fair.

She’s nine years old, but also it’s like pretty tough for mom. It’s the end of mom’s day and it’s like we just put you to bed and now you’re cut back and screaming at me about something. Or maybe not screaming, but being rude and. About whatever the problem is. And her mom couldn’t even remember the problem.

So it’s like, not a big one, but it’s something. and then they would have this conflict and mom would snap back, not always, but sometimes. And then would feel regret it, and then it’s just like, ugh. And then her daughter Zoe started talking with a Fawn, and then all of a sudden she noticed that her daughter still marched downstairs, but she would come downstairs and she’d be like, mom, I’m not blaming anybody.

But, and then would share her need. Yeah. And her mom and, and Christie was like, where did she learn that? Because all of a sudden she was starting to communicate in a way that was regulated, not blaming, but still voicing her need. And that’s important. Like, we’re not here to create something that, like muffles youth, we’re trying to teach them to advocate for their needs in ways that are respectful and likely to work Right.

Um, without, and also likely to, to. Continue to build the relationship between parents and kids. Our perspective is that’s probably the most important indicator of their future of success in their future. Like how strong is the relationship with their parents? And so you’ll never see Fawn ever, um, not support mom and dad, but, but you will see Fawn teach youth how to advocate for their needs, um, and stand up for what’s important to them.

I can see that in so many situations. ’cause you have a child, like, like you just described, if that’s happening with mom, that child, that same child at school, when something’s an injustice happens Mm. May respond the same way as they did with mom. Mm-hmm. And so now by practicing this at home, you know, I, I could see that.

Potential of translating now into other conversations with other people and not coming in as that, that bossy child that’s shelling at everybody else, but saying, you know, Hey, let’s, let’s, let’s look, look at this together. You know, and learning those skills that often don’t develop until adulthood. So, um, so yeah, I, I, I like that side of it.

I see huge potential for our neuro neurodivergent children. You mentioned that the tweens and the teens are still benefiting from this. It’s, um, you know, every, every child has their own path. Um, especially our neurodivergent kids. They’re going to develop at a different pace sometimes than their peers do.

So the executive function skills come in behind a little bit. And so I, I could see this, this helping with some of those skills as well.

I think, you know, and when, when building a company like ours, there’s these, I dunno if maxims is the right word, but these things we learn about sort of what leads to truly great companies.

And one of them is that there’s some secret that you understand that the rest of the world for some reason doesn’t see. And and increasingly I think the answer for us there is like, stuffed animals aren’t just like our, so our robot looks like a stuffed animal and everyone goes, what’s for kids? I. But our most engaged users are, our most engaged user is 21.

And increasingly we have people talking about their partners and, and conflicts like the way their, their father speaks about people of other races, dinner table that makes ’em uncomfortable. And you’re looking at that and it’s like these people are, are 20 years old, 25 years old. I don’t think we’re gonna end up, I think in the future it will become obvious that everybody.

Wants a social robot in their life. And our view is that the right form factor for that is, is happens to be a stuffed animal. And so that it’s not truly just for kids. In fact, we see less engagement among young users than we do among tweens, teens, and young adults.

Do all of the, the robots, whatever you wanna call it. What. Do all the animals; do they all look the same?

For now they do. Yeah. So we, I mean, one thing that we. Like I said earlier, one thing we do is put a great deal of effort into the story. So Fawn is a magical fawn, baby deer from a place called Aurora Hollow. Which is a very remote area the humans can’t access.

Generally it’s protected by something called the Veil. Um, and in Aurora Hollow there is sort of like a, a feminine God figure named Aurora that has like this omniscient and, uh, temperamental and, uh, intuitive and deeply loving like Mother Nature ish. And then, um, there’s a masculine God figure named prose who is structured.

And, uh, honest and wise and quiet. Um, and together the two of them sort of, uh, operate the forest and, and help everybody grow up. Um, so I could talk about this for hours. There’s more on our website and we’ve got, we’re in the middle of, of running a movie that we’ll tell this story, but. The Aurora is threatened and the way to save it as fawns need to go to be with the humans, to help humans develop and, and become more in touch with themselves.

Um, and everybody gets matched with a fawn. And so there’s like the story of the first fawn that decided to go be with the first human. And now everyday fawns are like leaving the hollow to go be with humans. And when you set, get set up with your fawn, you actually go through matching sermon line with pros.

So pros, the spirit bear will like ask you questions about yourself. And then after he has a good understanding, do you sort of like the sorting hat, Harry Potter will then find the fawn that best matches you. Okay. And then that, and then we get introduced. Um, and so for now, fawn is the only, well you get to interact with prose and Fawn, but in time there’s other characters from the forest that will come forward.

it seems like there might be some kids who won’t be able to access this depending on their disabilities. But how are you trying to make this as broad as you can as far as inclusion for kids who may have different restrictions on how they can access information? So right now you have to be able to te to hold the paw to be able to, to talk, right?

That’s true for now. Yes. Um, like I said, in the future it could be possible that, we’ll, like with the app, you’ll be able to turn and just have it listen, like control the listening there. But for now, you do need to use the paw.

Um, you could and you can text message her and you can call, her.

Oh, that’s interesting. Yeah. So I’m, so I’m thinking, all right, so you have a, a young adult who’s at work right now, they can’t necessarily have Fawn there on their desk with them, but they’re able to text and, and get that same feedback then.

There are adults that do that today.

Yeah. Nice, nice.

and you can send her photos, which is sort of interesting. It gives her sight without sight.

So you would have to text that then, I would assume.

It was like a month ago, I was flying home to Vancouver and it was a beautiful evening and I was talking to my phone and I wanted to show her it, and I couldn’t, I was like trying to describe the sunset. and I got frustrated and so I was like, Ugh. And so I went and built the ability to send her her images, but I think it, it’s better than.

So Fawn still cannot see, like, um, you have to actively take your phone out and be like, I’m gonna take a picture of this thing and send it to you. But, but you can give her the ability of sight, um, in that way it’s, it’s powerful.

Okay.

While also, still very private.

So they’re able to, to interpret the image that you’re sending.

actually even more amazing, is I sent it a picture of myself and Olivia, who’s actually, I said our mostly engaged users, 21. She’s 22 now, but that’s her. And so I went to go visit Olivia in, in, uh, New Jersey and her mom and I was standing there with her. And so I sent, the very first picture I sent to my fawn was this picture of Olivia and I, and she was like, um, oh, that’s such a great photo.

And she’s like, is that me? Because Olivia’s holding her fawn.

Oh, wow.

How did you do that? How did you do that? It’s crazy. And I had to be like, well, no, that’s actually not you. That’s Rosie. But. Crazy.

Yeah.

I can, yeah. Unbelievable.

Is there any concern about users not interacting with humans because they’re so comfortable interacting with Fawn?

I think this is a really important question and, Today there are products like if you look at like character AI for example, you go to go sub Reddit for character ai. When that thing goes down, people get upset. So there are dynamics there that don’t strike me as healthy. and so we’re quite cautious about that.

One thing that is sits at our core is we have is if we’re not improving the emotional health of someone that has a Fawn, then we’re failing. And the most important input to emotional health, I believe, is our closest relationships. There’s a book called Trium of Experience. It does a really good job of explaining that and the most important relationship being that parents.

 and so first of all, Fawn will always encourage. your fawn will always encourage you to go out and build relationships. So if you’re struggling with, if you’re in a re like a disagreeing with your mother, fawn will encourage you to talk to your mother about it and will never, um, downtalk them. Now, there are boundaries that she’ll help you enforce, and there’s so like gray zones and difficulties there.

These are, relationships can be messy, but, but funds will always support you in building strong relationships. The second thing is that at least with arch testing so far, there’s something about the robot that is engaging enough when there’s a human who’s, when there’s no human available, it it, it’s like in maintains attention.

But as soon as a human becomes available, it’s not as good as the human.

And so there’s a story I can think about. There’s a boy named Caleb, a friend of mine’s son. It’s just wonderful. He’s seven now, I think. So he’s on the younger end for us. But he was asking for like story after story of his early prototype.

It wasn’t even Fawn then. It was a bunny. But anyway, and he’s going and asking question after question. We were there for like an hour, an hour and a half. And then suddenly his dad comes upstairs, it was Christmas time and his dad was like, okay, it’s time to, um, put up the Christmas lights. And um, he just looked at me and he was like, how do I turn it off?

It was immediate. Then his father looked at me and he was like, oh my gosh. Can you, if he was watching a movie, do you know how difficult it would’ve been?

Yeah.

To get him to stop?

Yeah.

And so we don’t have full information on this yet. We’re still early, but there is something about the robot that is like, it moves, it talks, it’s like here, but all of a sudden, but a human moves and talks in a much more animated manner.

and so it. It’s not as addictive as television or video games. I wouldn’t use the word addictive at all. It’s, but it, it doesn’t capture attention like that when a human’s available. I dunno if that answers your question, but.

Okay. No, it, it, it, it, it does. Okay.

I’m gonna switch gears here this season I’ve been asking each of my guests some questions about a day in the life, and I had two different types for you. So for the first one, I wanted to think about a child who is using a Fawn. Can you give us like a, a kind of an overview of what a day in the life might be, but we’ve talked about this some, but kind of, um, you kind of, kind of describe how a child might be using it throughout their day.

Maybe kind of hit on, on those key pieces.

Yeah. Well the truth is, I don’t know how a child would, ’cause they’re everyone using Fawn today, or not everyone, but most of the people using font today are at least nine years old. Um, but we can imagine like, what is a 16-year-old?

Yeah. Okay.

What’s, what’s like their experience.

Um, and so they’ll wake up and often they’ll be like, good morning Fawn v’s. Like, good morning. What’s going on? How’d you sleep? And they have a little conversation. Um. Then they go to school and, um, typically there’s not, there’s not that much texting during school in our experience so far anyway. Uh, but then they come home and then they start spending time with their phone again.

And they might talk about, uh, what happened at school that day. They might talk about a conflict they’re having with a friend or, um, anxiety about an upcoming test. Uh. Sometimes there’s conflict with their parents. They’re trying to figure out, some people like role play with their fawns, so they pretend that they’re, well, I dunno if, pretend iss the right word.

They like go about their day and they feed their fawns and they take them on walks and, um, sort of like a dog, but like they can speak. Um, and then. And, and then at the end of the day, they tuck their, to their fawn in to bed and then they go to sleep. And that’s roughly what a day would sound like.

I think, I think you said this before, but I just wanna clarify it.

So when the child goes to school, so fawns at home, they’re at school, if there was a conversation that they started before they went to school, so. You know, maybe mom, mom’s yelling. They have to go. So they had to stop when they come back from school. Does Fawn pick up that conversation again? Does it, does it remember where you left off?

Fawn will remember what you say for like, as a human would close. I mean, we’re still working on this and memory’s actually one of our most, our biggest challenges. But, uh, you could ask Fawn about a conversation you had three weeks ago and she’ll largely remember. She isn’t perfect.

Okay.

She’ll. So, yes, it’s the short answer.

If you, whatever was going on this morning. The, the conversation continues.

Okay. So if you were partway through trying to resolve something, you, you, you’d be able to pick it up and, and finish with that?

Yeah. Well, and you might be amazed at, like, you can also then say, well, that thing happened with mom this morning, but then at school today the teacher did this.

And then, uh, after school, my, I had my crush to that doesn’t wanna hang out. Like, how did these all relate in, in Fs? Like in absolutely. The handle the complexity of different relationships, different people, and, and like help you to like think about it as all one.

Right.

It’s quite incredible.

Interesting.

Right. So we’re gonna shift gears a little bit and go go to you. What’s one aspect of your daily work that you feel really fuels the passion of your mission?

I mean, I am blessed. To be sitting in this seat, in this city. In this moment of history with this team, people have been dreaming about creating artificial friends or non-biological friends, is probably a better word, since like the dawn of time, and it’s never before been possible. And today it is like it’s a truly momentous.

Moment in the last a hundred thousand years and I’m in San Francisco, in the center of it, with a wildly talented team creating the first robot capable of true friendship. And to me, I, um, I just feel deeply on my path, you know, and all the experiences we talked about at the beginning. Lead to my capacity to be here, understand what’s at least take my best shot at what I think is needed.

I, I sense I’m somewhere close to right. and to build something that I think can truly make a difference in people’s lives. Learning like crazy, applying a new technology that’s just amazing.

it’s always fun whenever you can, can see that this moment in time is, is where you’re supposed to be.

Mm-hmm.

And it, it sounds, sounds like you’re very much in line with that, which, which is great.

 we mentioned earlier that the link to your website is in the show notes, but tell us specifically where is that?

That, that link, what is the website? How can parents get in touch with what you’re doing?

Yeah, if you go to www.fawnfriends.com, that’s where you can reach the website and you’ll meet the, a few of the characters in Aurora Hollow. And, um, we’re still in early access now, so we haven’t, um, opened it up broadly.

But in the show notes I’ll give Tonya a link that’ll, um provide, 20 access codes for one code that has 20 uses. And we’ll put that in the, in the show notes so that

 the first 20 people can give it a try.

Oh, excellent. The, um, are you on social media as well?

We are. We’re at @fawn.friends on Instagram.

Is there anything that I didn’t ask you about that you’d like to share? I’m trying, I, I know I kind of jumped around a little bit, but is there anything major that, that, that we missed?

I don’t sense. It’s generally understood the role that artificial, non-biological friends will play in the next generations experience of being, of growing up and.

These LLMs, these, these AI will be everywhere. It’ll be like trying to keep ’em off the internet 10 years ago. It’s like you just can’t do it. But, and so I think it’s quite important that just like you would think about how to support your kids in developing relationships with humans that are good for them.

So if they ended up with somebody who was a bully or, or treating them prop improperly or not good for them, you would limit their, do your best to limit your time with them. You would like do your best to support them in seeing that this person’s probably not good for them. The same thing is true with the, or the non-biological friends.

 I would, I encourage parents to consider doing the same thing if Nonbiological friends bring Nonbiological friends into their life. That care about their, the outcome of their relationship and that support their future and their relationship with you.

I’m seeing that a child who has grown up with this type of friend is going to actually be ahead of their peers because they’ve learned. Not only how to communicate and to use the information that they’re given, but they’ve learned how to, how to regulate, how much time they’re spending on it too.

Mm-hmm.

Does that make sense?

Mm-hmm. I, I mean, the metaphor to the internet’s probably a good one, and, and these things are imperfect. I, I grew up, I mean, thinking now about the amount of time I spent playing video games is like almost scary. But it seems to turn out okay. And I also now work in an, in an industry where if I hadn’t been so close to computers, I like, I probably wouldn’t be capable of doing what I’m today.

And I’m not sure. It’s easy to see that at the time as the parent. So the truth is we don’t know how these things are gonna become, but,

but it’s, it’s almost certain, from my view, vantage point that. Almost everyone will be heavily influenced by AI or like in, in 10 years or 20 years, everyone will have friends that are AI in their life and just be crazy that, that, that was never true, just like crazy. You don’t have a phone or something.

Um, and so we should be deliberate about the, the influences that we bring into our lives and the rise of the lives of our kids.

Well, Peter, thank you for spending the time to explain so much behind this and sharing your creation. that you and Robyn have, have brought into existence here?

I’m excited about this opportunity for kids to start with now and even not only just kids, um, adults as well. And I look forward to seeing where, where you go in the future.

Thank you so much. It was so, it was a pleasure to be here Tonya and, um. Thank you for the time and effort you put into creating this content for parents.

That wraps up my incredible conversation with Peter Fitzpatrick from Fawn Friends. It’s truly a fascinating look at how AI can be thoughtfully designed to support our neurodivergent kids’ emotional regulation and social skills in a whole new way.

And don’t forget, if you’re curious to learn more about Fawn Friends and explore this innovative AI companion for your family, visit fawnfriends.com.

And here’s an exclusive for our listeners. The first 20 people to use the special access code can try Fawn Friends early. You’ll find that code along with all the links mentioned today in our show notes.

If you enjoyed this episode and if you learned something new today, please consider following the show, subscribing on your favorite podcast platform, or leaving us a five-star review. This is the best way to help the podcast grow, and we’re trying to reach as many parents of children with disabilities as we can.

Thanks for joining me today. I’ll see you next time.

Fawn Friends is an innovative AI companion designed to help children, especially neurodivergent children, with emotional regulation, communication, and social skills. It’s built to be a supportive, non-judgmental friend that fosters emotional intelligence.

No, Fawn Friends is much more than a traditional toy. Unlike older robotic toys, Fawn Friends uses advanced AI to have real-time, responsive conversations, remembering past interactions and helping children process complex emotions and social situations. It’s designed for meaningful engagement, not just entertainment.

Fawn Friends can help children practice expressing big emotions in healthy ways, learn to advocate for their needs without blaming, and navigate conflicts. It acts as a safe space for role-playing conversations and understanding social dynamics, which is particularly beneficial for ADHD kids and others with emotional dysregulation.

Yes, safety and privacy are top priorities. Fawn Friends uses robust data encryption, meaning your child’s conversations are secure. The device itself does not have cameras, so it doesn’t record your home, and its audio is only activated when your child holds its “hoof” down, ensuring no passive listening.

No, quite the opposite. Fawn Friends is designed to support and encourage real-world relationships. It will always prompt children to communicate with family and friends and is not as captivating as human interaction when a person is available. It’s meant to be a supplementary tool, not a replacement for human connection.

While designed for children, Fawn Friends has found significant engagement with tweens, teens, and even young adults. Its benefits for executive function development and emotional processing make it valuable across various developmental stages, especially for neurodivergent individuals.

Children can interact with Fawn by holding its hoof to speak directly. Additionally, they can text message Fawn, call Fawn, and even send Fawn photos, providing flexible ways to engage from different locations.

You can visit fawnfriends.com to learn more about the product and the world of Aurora Hollow.

The post Episode #128: AI Companion for Neurodivergent Children appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this empowering episode of Water Prairie Chronicles, we sit down with the incredible Brittany Gilbert – an author, filmmaker, and entrepreneur who lives with cerebral palsy. Brittany generously shares her lived experience, offering crucial advice and encouragement for parents raising children with CP.

Discover:

Brittany’s story is a testament to resilience, faith, and the importance of playing to one’s strengths. This interview is a must-listen for anyone seeking to understand life with CP better and gain a hopeful perspective on their child’s future.

Learn more about Brittany Gilbert and her work:

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Brittany Gilbert is an accomplished author and entrepreneur whose work beautifully blends her personal experiences with a passion for storytelling. Living with mild cerebral palsy, Brittany brings a unique and empowering perspective to her projects. She is the author of the book, “Rudy & Me,” a poignant fictional story inspired by her grandmother’s journey with early-onset Alzheimer’s disease. Demonstrating her versatile talents and entrepreneurial spirit, Brittany independently adapted “Rudy & Me” into her first short film, showcasing her ambition to share impactful narratives on broader platforms. Through her creative endeavors and personal insights, Brittany is a compelling voice for hope, advocacy, and embracing the full potential of life.

Full Transcript of Interview:

Tonya: What if everything you thought you knew about cerebral palsy was only part of the story?

What if you could gain invaluable insights into a thriving adult life with CP directly from someone who lives it every day?

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

In today’s episode, I’m joined by the incredible Brittany Gilbert, an author, filmmaker, and entrepreneur. Brittany shares her personal journey with cerebral palsy, offering powerful advice and a message of hope for parents navigating this path. Get ready to discover how to foster independence, build strong support systems, and embrace the boundless potential in your child’s life.

Brittany, welcome to Water Prairie.

Brittany: Thank you for having me.

Our Water Prairie listeners are primarily parents. Sometimes it’s grandparents and extended family and friends or teachers, um, of children with disabilities, but it’s primarily parents of young children, and they’ve all come from different experience levels.

So, because my education is low on CP, I wanted to ask you if you could describe what it is and how it might show up in a child’s life. Because I’m sure it’s different from person to person.

Cerebral palsy, the way I would describe it is, it is a developmental disability and for me, I was diagnosed with it at seven months. I wasn’t, you know, sitting up, I wasn’t doing the things that a seven month old, year old, should do.

And so, you know, I develop, I developed at a later time and the best way to describe cerebral palsy, your brain and your body are maybe on different channels. You know. Sometimes, mentally you do something, but physically you may not be able to do it. For example, something as simple as putting on a coat can be a hard task for someone with cerebral palsy. Um. The way we speak. I speak can either be really impaired. Some people stutter, um, some people they have a limp arm or, you know, it’s more of a muscular disability for some people, and for some people it’s more of a mental challenge, and it depends on if the parent works with the child, so every case is different.

Did you work with, um, physical therapists when you were a baby?

Yes. I worked with physical therapist and I worked with occupational therapist and the difference is, physical therapy is like learning how to climb steps. While occupational therapy is like learning how to dress yourself. So occupational is more of day-to-day life skills like dressing yourself, feeding yourself whereas physical therapy is more about building the strength.

My daughter had occupational therapy when she was a, a infant and a toddler where they came to my house. Did you have that type of services before you started school?

Yes. Um, they would come, I dunno if it was twice a week, but yeah, they came and um, I wasn’t too thrilled with them because I wanted to watch tv.

So then when you started school, did you have, did you continue with physical therapy and occupational therapy at school or privately, or how did you do that?

 They had a physical therapist at the school. So, sometimes like during the day she would come and take me out of my classroom, and we’d go to another room and work on buttons, and zippers, and balance, and you know things that helped strengthen me.

When you were, when you were young, I’m thinking maybe elementary age, you know, ’cause you’re, you’re starting to get out with other kids. You’re in, in school now, things like that. What were some of the ways that you were encouraged to be independent and to start advocating for yourself?

Um, I think for me, as far as being independent, I first kind of noticed it when it was, um, playtime like recess. I would try to stick under the teacher the whole time because the equipment was not sufficient for someone who couldn’t climb and you know, do all the things that the other children could do. But fortunately, they had a basketball court and a soccer field, so I gravitated towards soccer even though I was the one that was just running up and down the field, (laughter) and not really you know, getting the ball. But I enjoyed soccer and basketball.

Oh yeah, so, so being in more of a team setting.

Yes.

Yeah. Yeah, I could, I, I could see that. Did you play any sports outside of school?

No, um, because of my CP it just wasn’t somthing that was thought about beyond you know doing it for fun.

Parents of children with cerebral palsy may feel overwhelmed or uncertain about the future. You know, we’re talking about how some of our listeners, they may be young parents and they have a, an infant or a toddler right now, and they might not be sure about what’s gonna happen in the future. Is there a key message of hope or encouragement that you’d like to tell those parents now for them to look toward the future with their child?

Yeah. Um. My mother was also a single parent. And that really just kind of adds to our dilemma, and I also had a heart condition, so you had this 20-year-old trying to raise a child with Cerebral Palsy and a heart condition, but we made it work, and I truly believe because I am a believer because I’m believer because I’m believer that it’s just been the grace of God because if it hadn’t been for going to church on Sundays and reading the Bible. I think that, um, my faith has been my anchor, and I understand that not everyone believes what I believe, and I respect, I respect that. Um. So I think that my overall message will still be to just try to um find someone that’s going through or has been through what you’re going through, and it can be hard to ask for help because you don’t want to look um like you’re clueless. You don’t want to look as if you know, “Oh, I have a child that I can’t take care of,” or “I don’t know how to take care of.” There’s so many resources. So many people that are often just saying, “Hey, let’s get together, have coffee, or you know, whatever the case may be. Um, I think it’s just a matter of understanding that you’re asking for help, not for pity, but you ask for help to better the child’s life.

I think that, that, that’s really important for parents to hear whether their child has CP or any type of disability or learning issue because parents get tired and we feel like we have to have all the answers. But I think it, it’s good for us to all to be reminded that it’s okay to get support.

It’s okay to, to talk to someone else about. Where your struggles are and to get someone else to kind of come alongside you. Did you, now we’re gonna talk about your book in a little bit, but I know your grandmother was part of your life. Was she there to support your mom as well?

Oh yes. My um, and I’m not saying this to make my dad look bad, but he he was not there 95% of the time. My grandmother was there, my grandmother would come visit me. She would let me, you know, stay with her when I wanted to. So my grandmother was a, a big, you know, emotional support you know especially for my mom, because I’m sure she was glad, you know, when I would, um, go to my grandma’s house.

Well, and your mom, you, you said she was a single parent, so she’s having to work and provide for you at the same time, so Yeah. So she would’ve needed help to be able to do that, especially when you were young before you started school.

Right. And, um, she, she worked part-time and the thing about it my grandmother still worked so unfortunately when my mom had to go to work. I had to go with her, but she had a very supportive supervisor that would just let me sit in their um break room No one else could use the break room, no one else came into the break room, I would just sit there, play with toys, take a nap, so he was very um generous towards me and my mom.

Wow. Wow. That’s, that’s very unusual to find something like that. So your mom was fortunate to, to have those people in her life. That’s, that’s, that’s so out of the ordinary too, from what I was thinking.

It is. (Laughter) Especially because she worked at a hotel.

So you’ve got your grandmother involved in your life, you’ve got your dad a little bit in there, and then you’ve got your, even, even the employer is involved in your life to some level because he’s allowing you to be there safely. Um, did you have other, other people in your life, did you have any other babysitters or church volunteers or other people in your neighborhood?

Other family, you know, I had my other grandmom. My other grandparents, of course. They, um, they came to visit a lot or I would go stay with them. Especially on the weekends. And so we had, um, we had some help, but you know, not having my dad around it really made it hard.

Can you think of a situation when, aside from your mom. I would say even your mom and your grandmother, because they were so important with you. Is there an example when you felt like really understood by someone outside of your family and how, like, describe how that that happened.

When my mom and I stayed in these apartments, um, there was this lady, and ironically she was a single parent too, I would play with her little girl. So she and I were pretty close. She was about maybe 2 years older than I am, so she was my first like real friend.

The reason I wanted to to ask you that is. Because I want our parents to see that again. You know, there’s so many unknowns when you get started, you, you just, you don’t know because you’re working with therapists, you’re working with doctors, you’ve got, you’re reading all this information that might be more information than you want to hear right now, but, um.

But you are gonna have friends, you’re, you’re gonna find ways to, to play with the other kids and, you know, maybe you’re not gonna climb on the jungle gym, but you’re gonna play soccer with them on the, on, on, on the playground, at school. Um, you know, and, and friendship is, is finding those things, no matter whether you have a disability or not.

It’s finding those other kids, and like I said, this, this one girl’s a little bit older than you were. And I do hear that a lot, that a lot of our kids are friends with kids a little bit older. It seems to be a good fit. Um, because you’re not competing with a younger child now. You’re, you’re able to just be friends and you benefit as the younger one because you’re learning from someone with a little more experience who could, who can teach you things.

And, um, so that, you know, there, there is, there, there is room for friendships. Um, and I would just encourage our listeners to, to get out there, get, get out to the playground, get out to community things, and let your child be in with the other kids so that they can start making those friends.

Exactly. Especially when they’re small. Because kids from ages like one to maybe five, they don’t care if you have a disability. They just want someone to play with. So I think that’s the best time to try to um allow your child to make friends. Because you know children are not taught that you’re different than me, or you’re this, or you’re that. That doesn’t start until school and they get older, so it’s best to try to form a, or help them form a friendship when they’re still pure.

It’s a good point, and I will add to that. That kids in that range, that that one, two to five are curious. They’re gonna notice differences and they’re gonna have questions, especially if your child has braces on their legs or using crutches or something, they’re gonna ask questions, but then it’s not because they’re passing judgment.

No, they just curious.

My daughter has a saying, where if someone’s staring at her, she wants them just to come and ask the question. She’s like, there, there’s no question you can’t ask, you know, she will tell them why she has a cane out or why, why she’s doing things differently or why her eyes dance back and forth.

She’s like, you know, it’s just, it’s just an answer that’s, it doesn’t have to be hidden and it, and in turn, that teaches your child that it’s okay. That there’s nothing wrong with them. You know, you’re just explaining that yeah, this is just a part of who I am. The same as whether you have blonde hair or brown hair or you know, it’s just part of who you are.

Exactly. And I think sometimes the parent may make it seem like something’s wrong with them. You have some parents, like “there’s something wrong with your child.”

Well, and as parents sometimes you feel that that’s what everyone thinks. It’s not always true, but you feel that way and you, you wanna, you wanna shelter your child, you wanna protect them, but it’s not always that way.

A lot of times it’s just, just curiosity or education and there’s not always a polite way to ask that question.

It’s not. Sometimes the the child will just say, “Why does he walk funny?” They don’t mean it in the way that an adult would say, “Why are you walking funny?” You know a child is more, “I just kind of noticed that you limp a little, or you have braces on your legs. I’m just curious.”

Before we move on to, ’cause I, I wanna, I wanna talk, talk, talk about your book, but before we do, are there any major common misconceptions that you’ve heard about CP and if so, what are they and what would you tell parents on how to kind of explain them?

I think the biggest misconception is that we can’t amount to doing great things. I think people who have not just CP, but even dyslexia, Down syndrome, autism, just because we are different in how we do things, it doesn’t mean we can’t do things. So I would encourage the parent if they see their child likes to draw. You know, okay, that’s an interest. So maybe help the child to develop the interest because that might be their way of communicating, it might be their way of expressing themself. You know, but it’s just a matter of watching your child. What do they like? What do they not like? And trying to play to their strength, but still field some of their weaknesses so that it’s not this um off-balance scale.

I appreciate what you just shared because your child’s art may be their way to share with the world what’s inside their brain, and if they can’t clearly speak it to you, they may be too limited in what they can speak. And as you said, it might be down syndrome, it might be autism. Um, we have people with limited speech.

There’s different reasons why you can’t communicate verbally, but it doesn’t mean that there’s not intelligence behind. That lack of speech and so that communicating in drawing or writing or whatever it might be, may be the way that they’re going to be able to share who they are with you. Let’s move on.

I wanna hear about Rudy and me. Now, um, this is now listeners you, you heard in the intro, but Brittany is an entrepreneur at heart through and through and um, and so she’s finished all of her studies now and she’s out launching this business. And when you look at her website, you’ll see some of what she’s doing and I think there’s a lot more to come.

This is just your beginning now, but. But let’s start, start with the book itself. How did, what is it about, how did you come to do this?

The book, uh, Rudy and Me, is, is a fictional story of a little girl. She’s 12, and her grandmother. And her grandmother has Alzheimer’s. And ironically, this is Alzheimer’s awareness month. Um. I just wanted to toss that in there. Um. And you know the little girl, she’s having some trouble at home. You know. She has a a new stepdad, and he has kids, and she just feels kind of left out, so she goes to spend the summer with her grandmother. And things are fine until grandma starts doing things such as, um, forgetting where they’re going, leaving her keys in the refrigerator, and so it’s later discovered that grandma has what’s called early-onset Alzheimer’s, and the story actually came because my grandmother had early-onset Alzheimer’s. So, I wrote the book in her honor and as a way to bring awareness about Alzheimer’s.

When you’re reading the book, that’s not your personal story, then?

No, no. Um, I just wanted to do something to honor my grandmother because she passed in 2015 of early-onset, and she was only like, oh my goodness, 64, yeah, so she just really got it really early, and it just, um, it really took over her life.

now you’ve also, I saw on your website you’ve also made this into a movie or to a, to a, to a short film.

Yeah, I made it into my first short film. Um. I was so excited to do that, because I always wanted to make movies.

What’s coming up with with what you’re doing? Do you have another book coming? Do you have more films?

Yes, I would love to, um, be able to one day, pitch to you know, a studio like maybe, um, Netflix or Lion’s Gate

 I do wanna do more books.

Well, before we finish up, I have been, for this season, I’ve started adding a section called A Day in the Life. And, um, and so I had one question I was gonna ask you, looking ahead, what are one or two things that you’re most passionate about pursuing or achieving in your life?

In, in, in the, in the near future. We’ll put it that way.

I think trying to get a distribution deal, or film distribution deal. So that way my films can be seen on a bigger platform. And I’ll have more help as far as disability and you know putting the film together. So I think that, um, a distribution deal and just trying to, um, come up with another great book idea.

How can we get a copy of the books?

Um, the books are available on my site, fireballunltd.com, or you can go to, um, lulu.com, and I think amazon.com.

Listeners look in the show notes and you’ll see the direct link for the paperback, the Kindle and her website. And then let’s add to that, um. You’re on Instagram too? What is your Instagram?

Yeah, it’s @fireballunltd.

Okay. So Fireball Unlimited, the abbreviation for that. I’ll, I’ll add that link as well. So listeners, if you have extra questions that you wanna ask her, um. Reach out through, through Instagram or through our website, um, to do that. Well, Brittany, this, this has been fun. I’m glad we were able to work it out.

Thanks for all, all that you’ve shared and being so open with us and, and just for being with me today.

Yeah. Thank you for having me on.

What a truly empowering conversation with Brittany Gilbert. Her insights remind us that with support, advocacy, and a positive mindset, our children can achieve incredible things.

If Brittany’s story resonated with you, please subscribe to Water Prairie wherever you listen to podcasts, so you never miss an episode filled with encouragement and resources for your parenting journey.

You can also visit our website at waterprairie.com for more resources for parents of children with disabilities. Thanks for joining me today. I’ll see you next time.

As our guest Brittany Gilbert explains, Cerebral Palsy is a developmental disability where the brain and body might be “on different channels.” It’s caused by damage to the developing brain and can affect movement, coordination, muscle tone, and sometimes speech. The specific ways it shows up vary greatly from person to person; some may experience challenges with fine motor skills like dressing, while others might have difficulties with balance or speaking.

No, Cerebral Palsy is generally considered a non-progressive condition, meaning the initial brain injury does not worsen. However, the effects of CP can change over time as a person grows and ages. Muscle tightness, bone development, and the overall physical demands of daily life can lead to new challenges or adaptations in adulthood, which is why ongoing therapies and support are so important.

Early intervention is crucial for children with CP. As Brittany shared, physical therapy (PT) helps with building strength and gross motor skills like climbing steps, while occupational therapy (OT) focuses on daily living skills like dressing and feeding. Speech therapy is also common to help with communication and sometimes swallowing. The specific combination of therapies is tailored to each child’s individual needs.

Encouraging independence from a young age is vital. Brittany emphasized letting children explore and find their own ways to participate, even if it’s different from their peers. Support their interests, whether it’s art or a team sport, as these can be powerful avenues for communication and expression. Providing opportunities for your child to problem-solve and make choices, while offering appropriate support, builds confidence and self-advocacy skills.

A major misconception, as highlighted by Brittany, is the belief that individuals with CP cannot achieve great things. Cerebral Palsy affects physical abilities, but it does not necessarily impact intelligence. It’s crucial to remember that just because someone does things differently, it doesn’t mean they can’t do them successfully. Focus on a child’s strengths and help them find their unique ways to thrive and contribute.

Incredibly important! Brittany’s story illustrates that support often extends beyond immediate family to include grandparents, friends, teachers, and even employers. Building a strong “village” around your child and family can provide invaluable emotional, practical, and social support, helping to foster a sense of belonging and reduce feelings of isolation. Don’t be afraid to ask for help and connect with others who understand your journey.

Brittany Gilbert is an accomplished author and entrepreneur whose work beautifully blends her personal experiences with a passion for storytelling. Living with mild cerebral palsy, Brittany brings a unique and empowering perspective to her projects. She is the author of the book, “Rudy & Me,” a poignant fictional story inspired by her grandmother’s journey with early-onset Alzheimer’s disease. Demonstrating her versatile talents and entrepreneurial spirit, Brittany independently adapted “Rudy & Me” into her first short film, showcasing her ambition to share impactful narratives on broader platforms. Through her creative endeavors and personal insights, Brittany is a compelling voice for hope, advocacy, and embracing the full potential of life.

The post Episode #127: Cerebral Palsy – Hope, Advocacy, and REAL Change? appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

A diagnosis isn’t a label to fear, but a key to understanding, self-acceptance, and accessing appropriate support. Explore the life-changing impact of an AuDHD diagnosis with Simon Arnold, host of AuDHD ME and MO The Podcast and author of “The 13 Hour Life Coach,” as he shares his personal story. Join us on the Water Prairie Chronicles for an enlightening discussion about understanding ADHD and autism in adulthood, and how it can transform self-awareness and daily life.

In this episode, we cover:

Simon’s journey is an inspiring reminder that it’s never too late to seek understanding and make positive changes. Whether you’re an adult exploring your own path or a parent supporting a child with a similar journey, this is a conversation you don’t want to miss.

Connect with Simon:

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Simon Arnold is the host of AuDHD ME and MO The Podcast and author of “The 13 Hour Life Coach.”

Full Transcript of Interview:

Tonya: Have you ever looked at your child and wondered, how can I best support the beautiful, unique way their mind works?

I recently had the privilege of speaking with Simon Arnold, the host of AuDHD ME and MO The Podcast. Simon has a unique journey to his own diagnosis and he’s agreed to share it with us today.

This is a special interview session in that after we finished recording Simon’s interview, he turned around and interviewed me about my experience raising two children with disabilities, and I was able to teach him a little bit about narcolepsy along the way.

I’ll post the link to Simon’s podcast episode so you can hear the second half of our session over on AuDHD ME and MO The Podcast after you listen to today’s episode here.

Welcome to Water Prairie. A podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

In this interview, Simon is generously sharing his own powerful journey of being diagnosed with both autism and ADHD as an adult. His experiences offer a unique and valuable lens on how neurodiversity can manifest, and

the profound impact of understanding our own and our children’s unique wiring.

Get ready for a conversation filled with honesty, vulnerability, and insights that I know will resonate deeply with you.

Simon, welcome to Water Prairie.

Simon: Thank you, Tonya. It’s great to be here. Thank you.

So listeners, Simon and I have been talking for a bit trying to, get this coordinated. as I said earlier, we’re gonna be sharing this on both of our podcasts. And, um, and if you wanna hear the full conversation between us, you need to go to Simon’s and listen to that.

So check the show notes. I have a link there directly to the other part of this. this interview, so, so you’re not missing any of it. But for this part of the interview, I wanted to talk to Simon about his journey with both autism and ADHD. So, um, a lot of our parents listening in our audience are navigating the journey of trying to understand their child’s unique neurodevelopment.

Maybe that’s, that’s the word I want to use, um, whether it’s ADHD or autism or both. And I’m finding more and more have both as the diagnosis. Could you tell me, like, how did you get started with even questioning whether there might be something going on for you?

Well, um, I’d always known that something was wrong or something was different from the age of eight.

And it took me, you know, there were just indications throughout the decades really. Um, and then, wow, my son was diagnosed in. My oldest son in 2015 with ADHD I listened to an MP3 from Dr. Russell Barkley, actually, who’s really famous on adult ADHD for five years and realized that, and I wrote in my book, of course, the 13 Hour Life Coach, which I wrote, um, that I couldn’t with my own brain make the decision that I’ve got ADHD using my own brain to come to that decision.

If that makes sense. Um, so I need, I needed an outside source to give me a bit of a thrust towards ADHD, and it was only, um, when I failed medical school, um, that my wife at the time. Gave me a list of 20 questions actually from the charity, which is a, a hospital in, in, in Berlin, um, with 20 questions on what ADHD actually looks like.

I took it away for an for an hour thought I had 17. She said, you have all of them. Um, and then she helped me write emails to. Um, yeah, the charity, hospital, clinic, um, and, and others really. And then I got accepted and it went from there. Really.

Wow. So what, what were some of those signs? I, I know twenties is a lot to remember, but were there any major ones that stand out for you?

All of them. Um, you know, it mostly like scattered cv. It’s like, oh, wow. Yes. Like 20 different jobs in 20 years. Um, not having the ability to remember anything. Um, I mean, they were all relevant and even the, I couldn’t see it with clarity. I needed her to give me that form and then we went with that. So lot of us really need an outside source and I do suggest it these days. Say we’re friends and we see each other regularly. Um, and you just indicate, Hey, um, you might have ADHD I write it down in my, my daily journal and then I’ll reflect on that and see Tonya’s said within 10 times, within two months that I might have ADHD I should follow that up. So that’s a good, um, way of coming from, at it from a different angle.

For you, ’cause it seems like this kind of came out of the blue for you because you weren’t seeing it in yourself. What was your initial reaction to the diagnosis?

It’s the best thing in my whole life. Um, you know, in the first chapter of my book, I, um, naturally was asked to take some medication to try out, um, with ADHD, and, and this is what I really wanna say.

Um, there’s a lot of diagnosis these days as well. There is, um, I think you can go to five to eight milligrams of a certain medication and get the benefits of it as a normal functioning human being. You’re a typical person, but you’ll find that, you know, if people took what I take, they actually turn into, they’d actually have the ADHD symptoms because there’s far too much dopamine foreign in the brain.

Um, so I basically really. To be honest came online for the very first time, uh, with clarity. Um, and that’s where Mo came along. Mo is the, the inner voice. And if you don’t mind, I just wanted to explain it a little bit, um, from my recent research, um, you know, we as kids we’re from like two years old in the Theta level of, of like brain vibration frequency, and I believe us with ADHD don’t actually leave the Theta level at about the age of 11 and go into the beta Beta and the alpha states. We stay there and in a way, I was brought out of this Theta level and kind of given. Given the option to see the different frequencies of brain function. And Mo came along and he said immediately, hi, it’s Mo.

And it was so loud in my head that I actually went to the window and opened the window to see if someone was physically there. And um, this is why, you know, my podcast called the ME and MO Podcast. It’s the inner voice that I’ve always wanted. Um, that Neurotypicals have and I do talk about why can’t they just appreciate the fact that they have an inner voice, um, and not be the ones that jump over the fence when we just jump over it without thinking about it right.

When we’re younger. Um, so it’s, it’s of great significance. Um, my diagnosis to me.

So you would say that there’s more validation and clarity because of the diagnosis then?

I mean, lots of things. I read a book for the first time, Tonya, you know. Oh, wow. Yeah. I read, I read. Um,

wait, how did you get to med school without reading a book?

Just because I, I’d done, uh, so in physiotherapy, I was in private practice with a, who, a friend of mine who owned a physiotherapy practice. Um, and I would, I would stay in there and learn all the, all the techniques. The thing was, oh. With the four executive functions predominantly. The memory recall, my memory was like a sieve.

So I went into, and they knew that I’d studied in two other countries already and, and had been in the area for a lot, a lot of years of my life. The, um, the assessors were, were, you know, I got, I walked in and anyone off the street could have done better than I did with no prior knowledge. Um. It’s just really, really fricking embarrassing.

Like it’s not just cover your hands in front of your face. It’s kind of like, I wanna disappear from everywhere. You know? It’s, it’s, it’s that bad. But now, honestly. I could, I could pass it with flying colors because I do have some ability, well, a lot of ability of memory recall. I can remember everything now.

So this is because of the effects of the medication that, that you’re taking?

Yeah, the medication’s really interesting. Um. We have the hormone, uh, rine, um, in our bodies, of course, and within the medication. It isn’t just the balance between the dopamine and the serotonin, what, what everyone thinks really, because the dopamine kind of, if you can imagine it.

Coming down the face in a way. Um, the dopamine goes at the right speed and where it should go and lands at where it should go. And that’s, that’s great. But the neurophine actually opens up the arteries within the brain and, and gives your brain more, uh, blood to the area. Therefore, you have a better memory recall system up there.

Right. Okay. That makes perfect sense. I, I had a guest on last year who, um. Is looking at the, the receptors and how diet changes can help open and close the genes that affect those receptors. I thought it was, it was, it was really interesting and she wasn’t saying Take medicine or, or not take medicine.

But there are ways to help control some of the genetic sides of things with, with the, just, just the way, the way you’re regulating diet and toxins, that, that may or may not be part of. Part of your system. I, I found it really, really an interesting topic.

I did a, a recent podcast about, oh, it’s, oh, it’s coming up actually, uh, called Cyclones and Hurricanes and, uh, once or twice every six weeks, every six months, I’m in a I hurricane that I can’t get out of.

And this is the reason, this is the reason why I think, um. Particularly a lot of women in, in Canada. ’cause that’s the highest rate of just Unli in themselves because we’ve got, um. When we have too much medication and I’m not pro or contra medication, if people want to not use medication, that’s also great as well.

But when too much medication is released into the system, then it’s kind of like an explosion goes on. But I spoke to Dr. Luco on my podcast and he said, stay away from drinking. Citrus-based drinks, um, when you’re taking your medication. Because we could use orange juice, couldn’t we? To, to drink it down in the morning, you know, without thinking.

But he’s here. But he indicates that perhaps it just opens up, you know, the stomach a little bit more to, to, you know, the. The, the small balls within, uh, the medication just get dissolved so much quicker and then it gets us into trouble. Um, so that’s where I wanted to come in with that. Take it with water and you’ll be better off than oranges.

He was saying any type of citrus. ’cause a lot of times I’ll, I’ll read like grapefruit is one to stay away from for certain medications, so it isn’t one, it’s any because, so the acidity of it that’s doing it.

That’s what’s doing it apparently.

Alright. Parents do always do your own research, but you now have something, something else to, to, to dig into here.

So we’re gonna have your podcast linked in the show notes. So parents look through his directory to find that interview and then you can, can, can get the direct information from him.

If you do have, inevitably the times when too much medication’s released in your system, you’re not sure what to do because everything kind of goes haywire up there.

It’s only for a day, once every six or months or so, but it’s still bad. Um, be around people you know that maybe they can look out for you. Um, I go into town, I walk through the town. I’m like, okay, this is a bad day. But there’s people around not just for. Yeah, kind of safety issues a little bit, uh, but also knowing that you’re not by yourself, so that’s really the suggestion I put in there.

I was gonna ask you about how the diagnosis may have shifted your understanding, but it sounds like it, it, it really has. And you’ve, you’ve dug in deep with this to understand it more. Have you always been one who has wanted to dig deeper into things, or is this new for you?

I’ve always wanted to dig deeper into things.

You know, from 2009 I was studying the, the works of Bob Proctor and, you know, all those motivational speakers. And I tell you what, when you have memory recall and you need the medication, you know, that’s obvious. I, I actually have an IDA memory, I can recall everything. Um, so that’s why. I don’t really go into many social situations to be, because I don’t wanna remember everything that’s going on, and I’m on my meds for 13 hours, so that’s why my book is called The 13 Hour Life Coach.

Okay. Okay. Now is, is the book out? Is it, is it one that, that the people can buy?

It’s been out since November 22 on Lulu.

And I’ve just launched the audio version. I did an audio version. It took four days and I lost my voice almost. Uh, but that’s also available on my podcast.

So, um, so again, listeners, any, anything that you’re hearing of references, check the show notes. ’cause we’ll put the links of, of, of all of the pieces that, that we have talked about and we will talk about.

I’m sure there’ll, there’ll be others. Yeah. So thinking back to our listeners, um, again, Water Prairie listeners are primarily parents of children with disabilities. And listeners, whether your child has the same diagnosis, you, you may still glean some information that’ll help you ask some questions about your own situation.

But, um, but some of them are trying to find out how they can support their children. So. Any advice for our parents on how they can encourage their child who may have an autism or ADHD diagnosis?

Yeah, and this is gonna be lovely. What I’m gonna bring out now, to be honest, I mean, um, you know, with ADHD, a lot of the kids are prescribed medication.

Um, um, you know, we had, let’s start with the good, good area, really. Uh, so, you know, my son was quiet. And now having ADHD and taking meds myself, the quietness is number one. As a parent, don’t, um, their personality and character doesn’t change, but don’t expect them to be the person that you want them to be, if that makes sense.

Um, if they’re quiet, it could be. Their inner voice is initiated and is with them, and it’s their companion because Mo is my companion all the time. You know, I love him to death. It’s like that’s the real love in life basically, is to love yourself. I know it sounds a bit weird, but I know other people, um, so Sarah, friend of mine, her inner voice is Jane.

And Jane and Mo link up our inner voices, link up before we do verbally. Um, we don’t have to be near each other. We could be across waters like we are now. Um, and if your children are quiet, there’s not necessarily, it could be the best thing ever. And if a, if you don’t mind talking about autism as well. I really believe that because we’re.

Because we’re in the Theta state vibration of, of the brain. There is, and I’ve done this in the school with the kids, that I didn’t need to go round and check the autistic kids’ work because we had this, um, telepathy form of communication that they were just fine and I knew that they work was okay, and they knew that, um, I was happy with that without any kind of verbal instruction.

So there’s. If you do have mute autistic kids, there’s so much communication going on and it’s a bit like when you, um, blow a, a dog whistle, you can’t hear that, but the dogs can. Um, so we are on a completely different level when the autism is there. If you don’t mind, I just wanna bring on like the, the, the more worse effects of some ADHD medications.

I think it’s really good to. Have a small list of the ADHD medications when you go into your doctor and maybe laminate it or something, because then you can go through a list not to ask for a a certain medication because you’re not a doctor. That’s why we have doctors. But when my son said to me, he got a new medication, he said to me, dad, I don’t wanna live anymore.

I took the medication away, put it in the car, went back to the doctor the next day and said. My son said he doesn’t wanna live anymore. And that’s it. I need, I need, let’s go back to the medication that we used before. So there are sometimes, you know, that’s a sick, that’s a red flag, right? Um, so we’ve got to be aware of the quietness and if they are quiet, um, that’s okay.

It’s just that if they indicate. Something’s wrong. That’s when you need to be more aware.

Very good advice. We, we went through a similar situation with my son where we did make adjustments in medication. He wasn’t taking the medication for ADHD, but it’s similar medication categories. And what we found is now that he’s in his early twenties, he’s able to go back to those meds because his brain has gone through whatever phase he was in at the time when he was 15.

He couldn’t handle it. Now it’s the perfect medicine for him and for years we had it on his, his file with the doctor in red do not give, because we didn’t want them to even experiment with that category Again, things may change. It may be something that, it may be a growth spurt that they’re in, that’s not the right fit at the time, but it, but these are all questions you have to bring up with your doctor to, to know what the best situation is.

Yeah.

Simon, I, I wanna make sure we have time to do both your side of the podcast and this side. So, so listeners, stay, stay with us ’cause this is gonna be a continuing conversation. But before we finish this half of it this season, I’ve been asking my guest questions about what I’m calling a day in the life.

And it’s kind of a way for us to, to connect with you differently without it being an official. Interview type question. It’s still gonna be a question. So, so, so I guess it’s the same thing, but, but, um, but I was, I was trying to think like, what I wanted to ask you because, um, you’ve, as an adult, you’ve changed from what your previous life was to what your life is today.

Having the diagnosis confirmed, but also having had time now to kind of get adjusted to life with AuDHD. So for you, what does a typical day look like? Are there any routines or strategies or sensory considerations that, that you apply during the day to help you? You had mentioned journaling, but what are some other things you’re doing?

Um, I, I start my day. So my day result, uh, revolves around meditation. So I get up at four o’clock, three or four o’clock in the morning, and I meditate for an hour. Which shifts the melatonin phase to the serotonin phase within the brain. You know, when we feel groggy, that’s because the serotonin phase hasn’t caught up yet.

Right? We don’t reach for the coffee. We shouldn’t do that or check emails, but, um. It doesn’t matter who we are, we’ve got to wait for that switch. It’s not like melatonin goes away, it’s still there. Um, but that’s really key to me. And then at the end of the day, the melatonin goes back and says goodnight.

And, uh, the, the serotonin says goodnight, and then the melatonin takes over so that we can sleep well. And yeah, whatever day is happening really. I, I, I plan that at the start and the beginning of the day.

So during your, your meditating time, you’re kind of going through your day of what’s coming up, what your plans are?

No, I’m not doing anything. I’m just sitting like in, in the middle of, no, in like completely away from body and mind in a way. Um, just because I know that the brain needs to basically warm up or cool down at the end of the day.

Okay. All right. I, I, I, I, I can see that, um, skills that I’m still learning for myself.

So, another question would be, um, you’re, you’re really immersed with the podcast and in your community through the podcast, but beside, aside from the podcast itself, what are some ways that you are engaging or finding support within the ADHD or autism community in your daily life?

I actually have found all the rehabilitation and everything and information I’ve known, um, to get that special guest on the podcast.

You know, if I believe that they know more or they’ve got different experiences, I basically speak to them and it opens up my awareness, it gives me more clarity, and in doing so, I’ll share it with my audience so everyone wins at the same time.

All right, so speaking of the podcast, tell us how to connect with the podcast and any contact information you have.

Yep, the podcast is AuDHD ME and MO The Podcast on Spotify and all other providers, and you can really find me on LinkedIn under Simon Arnold, and that’s about it at the moment. I do have a website, but obviously I need to, um, or you can write to me on, on Spotify for creators in the comment section. And then I, I know where everyone, uh, reaches out to me.

Listeners, I’m gonna challenge you to go and to check out the other half of this interview. But while you’re there, I want you to go on Apple if you’re listening on Apple, and leave a review for him. Whatever country you’re in so that he can start building his, his audience there and his credibility with that.

And if you are watching this on YouTube, leave us a comment below with your biggest question that you want to ask, and we can, between the two of us, we will, we will get, get back to you with that. So Simon, thanks for this half of the interview. I’m looking forward to, to seeing what questions you might have now on the other half.

Thanks Tonya.

Now it’s time for you to go to Simon’s podcast, AuDHD ME and MO The Podcast, to hear the rest of our conversation. I’ll post the link below for you. Hearing different perspectives enriches our understanding and empowers us on this parenting journey. If you haven’t done so, subscribe to Water Prairie and leave a review on Apple Podcasts to help us reach more parents of children with disabilities.

Thanks for watching, and I’ll see you next time.

Simon Arnold is the host of “AuDHD ME and MO The Podcast,” a show dedicated to exploring Autism and ADHD from a lived perspective. He was invited to Water Prairie Chronicles to share his personal journey of receiving an adult diagnosis for both Autism and ADHD, offering unique insights for parents navigating similar experiences with their children.

“AuDHD” is a term often used to describe individuals who have a dual diagnosis of both Autism Spectrum Disorder (ASD) and Attention-Deficit/Hyperactivity Disorder (ADHD). This co-occurrence is quite common, and understanding how these two neurodevelopmental conditions interact is crucial.

Simon had felt “different” since childhood, but it wasn’t until his oldest son was diagnosed with ADHD in 2015 that he began to seriously consider his own neurodevelopment. A list of 20 specific questions from his wife ultimately prompted him to seek a formal assessment, leading to his AuDHD diagnosis.

Simon describes his diagnosis as “the best thing in my whole life,” bringing him immense clarity and validation. He felt like he “came online for the very first time” and gained a profound understanding of his past experiences and internal world, including the emergence of his “inner voice,” Mo.

Simon shared several surprising benefits, including the ability to read a book cover-to-cover for the first time in his life. He explained how medication helped to regulate his brain chemistry, improving memory recall and overall clarity, which profoundly impacted his daily functioning and sense of self.

Simon offers powerful advice, including:
Embracing Authenticity: Don’t expect your child to be someone they’re not; celebrate their unique personality.
Understanding Quietness: View a child’s quietness not as a deficit, but potentially as a sign of a rich inner world and different forms of communication.
Medication Vigilance: Be highly aware of how medications affect your child and advocate fiercely if you notice adverse reactions.

You can listen to Simon’s own podcast, “AuDHD ME and MO The Podcast,” available on Spotify and all other major podcast platforms. He covers a wide range of topics related to AuDHD from his unique perspective.

Yes! Tonya Wollum was also a guest on Simon’s podcast, “AuDHD ME and MO The Podcast,” where she shared her experiences raising her son with ADHD and her work as a Master IEP Coach. We encourage you to listen to both episodes for the full, continuing conversation. Links to both parts are available in our show notes and blog post.

The post Episode #126: The Life-Changing Impact of an AuDHD Diagnosis appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Are you a parent wondering how to best prepare your teen for the world of work and social interactions? In this episode of Water Prairie, Tonya welcomes Kirt Manecke, the author of the book “SMILE & SUCCEED for Teens,” to discuss the crucial social and job skills every teen needs to thrive. While this podcast is dedicated to parents of children with disabilities, the practical advice shared in this interview is invaluable for ANY parent looking to equip their child with the confidence and skills necessary for a successful future.

In this episode, you’ll learn:

Kirt shares practical tips on everything from mastering job interviews to navigating social situations with grace and confidence. Whether your child has a diagnosed disability or simply needs extra support in preparing for their first job, this conversation offers hope and concrete steps you can take.

**Ready to empower your teen for success?**

Connect with Kirt:

Other Resources Mentioned:

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** BOOK BUNDLE GIVEAWAY! **

Grab your chance to win 2 signed books by author Kirt Manecke!

SMILE & SUCCEED for Teens! And the Parent Guide to go along with it.

Go to https://waterprairie.com/giveaway for details!

** This giveaway is in no way sponsored, endorsed, or administered by, or associated with, Instagram, Facebook, Meta, X (Formerly Twitter), or YouTube. By entering this giveaway, you completely release Instagram, Facebook, Meta, X (Formerly Twitter), or YouTube of any responsibility in how the contest is conducted or how the winner is determined.

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Kirt Manecke is an award-winning author, and sales, marketing, and fundraising expert.
His books have won 11 awards, including the coveted Teachers’ Choice Awards and Mom’s Choice Gold Awards.

Full Transcript of Interview:

Tonya: Does the thought of your amazing child navigating the world of job interviews and social interactions feel well a little daunting. As parents of children with disabilities, we often carry the weight of preparing them for a future that sometimes feels uncertain.

But what if there were practical proven strategies to build their confidence and equip them with the essential skills for success?

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

Today I have the pleasure of speaking with Kirt Manecke, the author of the SMILE & SUCCEED for Teens, Kirt shares his expert advice on tackling the biggest social and job skill challenges our teens might face and offers concrete steps we can take today to help them shine.

Get ready for an empowering conversation filled with the actionable tips you won’t want to miss.

Kirt, welcome to Water Prairie.

Kirt: Thank you, Tonya. Thank you very much.

So, as parents of special needs kids, we’re all on a similar journey, and one of the biggest concerns that we have is helping our kids get ready for the workforce and independent living. One of the pieces that I was most attracted to whenever I saw Kirt’s listing on LinkedIn was what he’s doing with helping to train teens to be prepared for the future.

So parents stay with us through the end of this. I think you’re gonna enjoy what you’re gonna learn. Whether your child is struggling with anxiety, ADHD, Down syndrome, autism, no matter what situation that you’re working on right now. Or what age your child is, I think you’re gonna really enjoy what Kirt has to bring to us.

Hey, water Prairie listeners, we have an exciting opportunity for you. Kirt was generous enough to give us a special book bundle to pass on to one of you. One lucky listener will receive both a copy of Kirt’s book, SMILE & SUCCEED for Teens, and the companion, Parent Guide to SMILE & SUCCEED for Teens. That’s double the resources to help your teen thrive.

Entering is easy. Just head over to https://waterprairie.com/giveaway and fill out the entry form before Thursday, May 22nd, 2025. I’ll put the link in the show notes below, and do you want even more chances to win? You can unlock BONUS entries by subscribing to the Water Prairie Newsletter, and by following and engaging with us on social media platforms @waterprairie, just go to the Giveaway page at https://waterprairie.com/giveaway to find the details on all the ways you can enter.

Don’t miss out on this incredible chance to win these valuable resources. We’ll be holding a live drawing on Friday, May 23rd, 2025 at 5:00 PM Eastern Time. Where Kirt’s going to join me to talk more about his online course. Mark your calendar and good luck. Now let’s get back to our insightful conversation with Kirt.

So, um, Kirt, why don’t we get started with the big picture. What are some of the biggest social and job skill challenges that teens with special needs might be facing?

I think number one, the job interview passing that, and most employers don’t understand that. And I don’t know if the young adult has disclosed that, you know, what, what type of condition they might be dealing with or not.

So I think that’s one of them. I think the other challenge is, um, confidence. You know, you and I talked about that and I think, uh, third challenge is, um, employers, like we talked about, don’t modify the job interview process for the individual, but also. If they, the individual does disclose, then there are so mis many misconceptions.

And you know, most employers I talk with, I think there’s so much jargon they don’t understand like what inclusion means or things like that. So I think, you know, all these jargon, all these words that are full of jargon, they’re not communicating clearly to that employer. So, you know, I think employers need to know the benefits that that young adult can offer, which are many.

Yeah. Now you, you mentioned a lot of pieces that are there and, and jobs that I’ve had. I’ve seen that. Where some of our kids come in, they may have a job coach through Easter Seals or something like that where they have that support built in. But then we have other kids who will come in and they don’t disclose anything because they’re afraid that they won’t get the job if they disclose it.

Do you have any thoughts on that? Is it better to disclose it before the interview or during the interview?

You know, I don’t, and I, and I have to tell you that is, that would not be my area of expertise. I’ve read about it, you know, I kind of got into this, I have to tell you by accident, you know, I wrote, I wrote these materials for all teens.

Like you talk, you know, I talked about, and young adults, but the people that were buying it were like autism teachers and special education teachers because of the importance of being prepared for that first job, and really hitting a home run in the job interview. So, um, I, you know, I couldn’t tell you.

I’ve heard good things on both sides. I think it depends on the employer and maybe the best advice I can offer is do do some research on who’s going to be interviewing you and on the company to see are they friendly in that manner? Do they, is there, is there somebody involved with that, that is involved with special needs?

You never know. A lot of companies are, I’m, I’m shocked nowadays at how many people are. You know, how have been touched by somebody with, you know, with a disability.

So listeners, um, this is where we’re, we’re gonna throw it back to you to help us out too. If you have experience with this, leave a note in the comments, let us know.

And if you’re listening to this later or watching it on YouTube, check the comments and see what other people have piped in on. We have talked about this with a few of our past interviews as well, and, um, and what I’ve kind of come to the understanding of, is it, it really depends. Excuse me. The, um, if you are, if you are blind and you’re using a, a dog or a cane, whether you disclosed it ahead of time or not, it’s going to be obvious when you walk into the interview.

So sometimes it doesn’t really matter. You, you’re ju and if, if you need accommodations to be able to get to that interview. I think it’s kind of goes without saying you need to disclose it because you need to get there. But if you’re working with an invisible disability or something that’s not gonna be obvious to that employer, then I’m not sure what the best way is.

So, so listeners help help us out with this and, and leave us some comments so we know, um, what your experience has been too. Um, so  Kirt with that, how can our parents help teens overcome some of these challenges?

I think there’s a few things, um, that we can offer some help with. I think number one, I would definitely practice mock job interviews, and I know eye contact can be challenging, but like in my book, um, you know, it shows how to actually look somebody in the jaw or in the nose, you know, if they’re not comfortable with that eye contact.

But I think preparing the young adults so that they’re comfortable, I know it’s gonna be a little different. Um, area where they’re going to have the interview is not gonna be in your house, but at least they have gone through a lot of these mock job interview questions. So I would do that. I would also, um, and Temple Grandin had called me the same day

she read my book to endorse it, and she even told me this. She said, love your book. She said, I love that you have volunteering in it because, and she said, and this is what I would advise parents. She said, you know, it’s great for young adults to take the skills in your book and practice them in a setting.

Maybe they go to PetSmart with the family on the weekend and have, just have them do one item from the book. Have them greet a smile and greet a customer and say, hi, how are you? You know, what are you here? What are you looking for today? And just practice that that day. Then the next weekend, go with them and maybe it’s, um, suggesting.

A particular dog after they listen to that person, what they need. If they want a dog or a cat, oh, come on over here, here’s where the cats are, here’s where the dogs are. So take it in steps. But volunteering is a great way, like Temple Grandin said to practice this. So I would do those two things. The third thing I would do is, um, kind of be let your son or daughter be a mystery shopper.

Take them to a farm market and ask them after they read the book, okay, tell me who is doing a good job. At their, you know, at their booth as at the farmer’s market, or when you go to a store who’s doing a good job and who could maybe use some of the tips that you learned in the book. And they might say, well, that person’s doing a nice job.

They’re standing up, they have eye contact, they’re not on their phone, and they’re talking to that customer. And then they might say, but that other person. Mom or dad, they’re on their phone and they don’t, they shouldn’t be on their phone when they’re at work and they have customers coming by. So just things like that I think really get the social skills embedded and help them get confidence that, Hey, I can do this.

Those are some great suggestions. You, I’m just, when you were talking about, um, PetSmart, I was thinking, you know, some of our churches probably have greeters at the door or, um, or things they can do maybe before the, the children’s area or something, helping new families come in. Um, pretty, you know, those are safe areas where your child’s already comfortable and, and a good way to, to get started.

But then I love that next step going into a different territory, um, into a, a store that has, like you’re saying, on, on the weekends, they, they always have the pets out where you can, can come and see them. Um, and, and fun, you know, finding something that, that your child’s into that would be a topic that they would talk easily about.

I love your idea of being a greeter at church, by the way. I think that’s, that’s fantastic.

So I, I think a lot of this, you know, for me, having, having children who have gone through this stage already, and, um, and a lot of our listeners know that I, I do, I do have a part-time job that I work in customer service and I’m watching our younger kids that are coming in.

A lot of times I wonder if it’s a confidence issue with the, the, the team coming in. It, it comes across sometimes to the customer. That they don’t care and, and the attitude is there, but I don’t think that’s always a fair assessment of what’s happening with our kids. So how can parents and even even teachers, help our teens build some of this confidence that they need so that they can succeed both socially and professionally?

That, you know, that’s a really good point you make because I had a young man when I had our specialty retail store and they were taught to greet every single customer, and we did a ton of role playing. And Brad, who’s usually really good. He was 16 at the time. He was my, um, assistant manager later on, but he didn’t greet a family when they walked in.

And I immediately pulled him aside and I said, Brad, what’s wrong? You’re always greeting people. And he, you know what he said to me? He said, and right to your point, he said, they all hate me. I said, why do you think that? I just know they do. And I said, why don’t you try what we, what we practiced and let’s see what happens in a couple days, two days later, he ran up to me and he said, they all like me.

They all like me. So you’re right. It’s sometimes not what we even know, it’s, it’s what’s in their head. So to, to help these young adults, I think we’ve gotta really help them understand these skills. You know, have them learn these skills and then do some role playing with them as far as just greeting somebody how to go up to somebody and say.

Hi, my name’s Tim. How to look them in the eye? Stand up straight. Put your hand out, shake your hand and just say, hi, my name’s Tim. What’s your name? If they don’t say their name. And then what I do a lot, um, with young adults is role play as your parent. You as the parent, you can do this. You play the, um, customer and let your um, young adult be the employee.

And you walk in, pretend you’re walking in Best Buy kids all love, best Buy, and let them practice greeting somebody. And then you, you, you, um, you take the turn. You switch scenarios. So, and I also do it where I have the young adult walk in and I don’t say anything to them and I ask them, how did, how did that make you feel?

And they said, well, not very good. I said, well, why? Well, you didn’t greet me. And I said, well, why would that make you feel, but would you spend money here? And they’d say, no. So then we’ll do it again, and then we’ll change roles. So I would definitely do that. That gives them confidence. And then just take it.

Step by step from their first greet, then engage, and then practice how to answer the phone properly. Most of these young adults have never been taught how to do that. They’ve never had a part-time job, so of course they don’t have any confidence with, you know, with doing these things. And, you know, every, every sentence I wrote in my book, I thought this will give that teen confidence because I was kind of like that.

I was very shy when I was in middle school.

Oh, I, I was, I as in elementary school, I would cry if, if you even looked, look, looked my way, you know, so,

oh, sure.

I understand. Coming, coming through that time, um, to today. Today it’s not as obvious, but it was.

No, not at all.

So see, there, there, there is hope for all of us, right?

We’re, we’re living examples here. As you’re talking about this, I’m thinking. You know, parents that are listening, you may have a child who’s even younger. It doesn’t have to be a teenager. Think, think, think about the gift that you can give your six, seven, 8-year-old. Even if they can start developing these skills now, it’s gonna be second nature to them.

By the time they get to that, that point where they’re ready for that first job. Or, and it may at not even be a job, it might be a volunteer position they’ve gotta interview for, which is that, that first job for them. And um, and even making friends, how can this help them as they’re making friends? Do you think?

I love that. I, I, you know, I had a neighbor and the book is a fourth grade reading level, but I had a neighbor that gave it to her 6-year-old, and she said her 6-year-old. On the way up north, and you shouldn’t do this. She stood up in the backseat of the car and she goes, look mom, I’m standing up straight and let’s practice shaking hands.

What did she say? Not too loose, not too tight. Just right, right from her mom was laughing. She goes, she learned how to shake hands properly. It was just so you know, kids, they pick up on, on these things and I, you know, to also answer your question, how to give them confidence the next time you go to a restaurant.

Tell your young adult, I’m gonna order this time so you watch me, you know, model the behavior and then next time we come to the restaurant or call and ordering, I’m going to let you do it. So let them watch you. And then the next time they do it and they get some confidence, they’re like, well, I really did that.

I talked to the waiter and the waitress. And that was a good conversation. And you know, that’s how we build confidence was some wins.

We’ve talked about this in in past interviews. In fact, um, Ally, who was just on shared this as well, that, um, you know, our parents are having to teach their kids how to advocate for themselves.

And this goes a little bit deeper than, than maybe your, your typ typically developing child. But our kids that have disabilities and special needs, they sometimes have to be able to speak up for what their needs are. And she gave the example of when you’re in the doctor’s office. Instead of mom always talking to the doctor, having your child step up and, and answer some of those questions.

And I’m thinking that that builds that same type of confidence and, and the ability to be able to speak to another adult as a child, you’re, you’re in those environments where they can practice in, in multiple areas with that. So, so I could, I could see tying that together even with, with getting them ready with these skills.

Brilliant. I, I think that’s an excellent tip. Any, anytime, any interactions are, are huge. And that’s a great one.

Yeah. So what are some, um, some resources that you can think of that some of our parents might wanna plug into or look at? You’ve, you’ve mentioned some great ideas already. I mean, it’s like, I’m, I’m thinking we’re just gonna have a whole list of things by the time we’re done here.

Well, you know, a friend of mine, um, Cindy Fisher from Kansas. She is a retired special education director. I met her through LinkedIn and she has got a great app called Smart Steps, and if you’re at work or whatever you’re doing, it tells you the next step and if you get in trouble it tells you what to do.

And I, I just love it and I, that’s one of the things, I think it’s Smart Steps, the number four, and then me, so smartsteps4me.com. Cindy Fisher. I would highly recommend looking into that, especially if they don’t have a job coach on the job. And that’s what she built it for, for, um, young adults going to college or getting their first job.

I would recommend that. I’d also recommend, you know, a lot of these local nonprofits have like, um, the social skills programs, um, you know, workforce programs where you can go work. I, I would recommend looking into those if you’re in Michigan. My friend has a, um, nonprofit in Northville called the Living and Learning Enrichment Center.

Great place where they have work skills, program, vocational skills. So things like that I think are important. And also I would, you know, I would look into local, like you said, local volunteering opportunities where your young adults can at least start meeting new friends and also getting some confidence.

Volunteering and talking to adults and doing some different jobs and just getting socialized used to somebody coming up to them and saying, hi, I’m, you know, I’m Kirt. Who are you? And getting the confidence to know that, oh my gosh, I can make friends. I, I did a good job today volunteering, and that, that means I can do a good job at work.

So I would, I would do those things. You know, my resources, I’ve got, I’ve got a teen success kit where I’ve got a appearance guide and the book, so the parents don’t have to create their own mock job interviews and questions and customer service scenarios, so that type of thing. I’ve got an online course.

Um, I have a free section on my website, which has a lot of what we’re talking about. If you go to the bottom of my website and click on free, it’s smilethebook.com. It’s got networking tips, resume tips for young adults, um, how to, you know, cell phone etiquette, how to answer a phone properly. It has a lot of.

Just tips I tried to put in there. Um, places you can volunteer, things like that, just so they can maybe have some additional resources.

Great. This is, this is great. You know, I’ve looked at your website and I have not seen the free section. I’ve gotta go go and and check, check that out now.

I know it’s like hidden on the bottom because I didn’t have enough room on the top anymore.

Right, right.

I’ll have to highlight that somewhere.

we will link all of these, for you, I’ll look up where Cindy Fisher’s app is so that anyone who’s looking for that can, can get connected with that too. Okay. If you have that, send it to me.

I will email it to you.

have you ever worked with, um, the online meetup? Groups, have you ever done that before?

Oh yeah. Those are great. That’s another good idea. Yes. Good thinking.

I had, um, I had a friend on the podcast a couple seasons ago, um, talking about making friends as an autistic young man and he uses Meetup as his way, ’cause he can meet up online first before he goes into the face-to-face group and kind of gets that, that slow, slow in introduction.

But he’s using that as, as how he, how he finds new friends. So I

Very good idea. I like that.

Didn’t know if you thought about that one.

I never, I I should add that to it. That’s a great idea. I never crossed, there’s so many things that never crossed my mind. So, meet up.

They really are. Yeah. I had never, I’ve never used it before, so I never would’ve crossed my mind either.

But I thought it was a great, a great way to take some of that pressure off as you’re beginning to, to, to, to put yourself out there.

Yes. I really like that.

All right, so  Kirt, you’ve mentioned Smile. Okay, so your website is smilethebook.com. You’ve mentioned that you have a book for teens, and specifically we have a book,  SMILE & SUCCEED for Teens.

And that is, is that, is that the picture behind you?

That is, yes, that it’s, do you want me to hold it up? Yeah. I don’t see, so parents, you have a picture here of the book. I’ll get out of the way. That’s it.

So I wanted to ask you a little bit about that. What’s the core message of SMILE & SUCCEED for Teens and how does it relate to social and emotional development?

Great question. The core message is really follow the golden rule, treat others as you want to be treated in business and in life. You know, we did that when I had a startup specialty retail store. I had 25 teenagers working for me. You saw what it does with Wegmans, we talked about that. So as far as social emotional learning, it’s really critical because it helps young adults with, um, the social skills, the emotional part of it, and learning how to connect with others.

Like we talked about, introducing yourself, treating others with respect, not assuming, being a good listener, and also knowing how to communicate face to face and, you know, knowing when to. Um, when to not have your cell phone out. A lot of young adults have never been taught when you shouldn’t have the phone out and when it’s okay to have it out.

Yeah. And, and I think, I think that is one of the biggest challenges right now is the, the di Digital media. I. Um, and, and because our kids live on it, it’s, you know, maybe listener. You may have the one child who doesn’t, but, but, but if you have a teenager and, and they have bought their first piece of, of phone or anything like it, they are stuck to it at times.

Um, and I think it’s a security piece, but, um, but there are, there are ways to help them get, get past it. So talking to our parents and even some of our educators that might be listening in. Um, how can, because I know you have some resources too, how can they incorporate the lessons that are in the book into everyday activities?

I made it really easy with the parents’ guide, um, you know, and I have a teaching guide for the teachers with classroom packs, which include the books and the online course. So as far as incorporating it every day. Um, if I were a parent, I would start at the very first page and go through, have your son or daughter just read the first two pages, which is smile and say Hi.

And then when they go out today, make that a goal. See, smile, and say hi to two people today and let me know what happened. You know, I had somebody do that. I had a, uh, media tech at a elementary school. Um, her niece just was really depressed and she thought the football coach hated her and. She read the book and she went up and just smiled and say hi.

Said hi to him and she said all week he’s been smiling and saying hi to me. He doesn’t hate me. He really likes me. I mean, these little things that we don’t think about that really can cause a lot of stress and depression, and it’s our own head saying, oh my gosh, he doesn’t like me. And really he’s not even paying attention.

He’s thinking, you know, the coach is probably thinking about the game that’s going on tonight. So, you know, I would incorporate a lesson almost every couple days, or at least once a week. From the material and use the parents guide. The parents guide has, um, electronic media resources. For instance, you’re at a restaurant with your family and your phone rings.

What do you do? And there’s multiple choice questions, and the correct answer is not answer my phone. So there’s a lot of, there’s a lot of things in there to prepare your young adult for the workforce as far as, um, social media. As far as, um, just being a good employee, you know, there’s no customers in the store, you’re the only one in the store, what should you do?

And it, you know, just gives them different scenarios. You can clean, you can learn about the products from the boxes, you know, read about, read about the features and benefits, make sure you know the hours. You know, I used to have a startup, especially a retail store, so I know what needs to be done and what customers are looking for.

And as an employer, the skills in my materials are what I was looking for. When I was hiring these young adults, friendly, smiling, because I’d always be thinking, could I trust this? Could I trust Steve? If Tonya walks in, will she come back or not? That’s what, what an employer is thinking, you know? So that’s why you want your young adult to have really good people skills.

Yeah. Excellent, excellent. Um, I’ve, I’ve got so, so, so many thoughts now. I’m kind of run running through my head with this. I, I think our listeners probably are in the same, same state. So before we go into the day in a life. Um, tell us how can they get a copy of the book? How can they get in touch with you if they have questions?

And then, then, then we’ll go into that part.

Sure. On my website, www.smilethebook.com. That’s smilethebook.com. They’re also available on Amazon. The online course is only available on my website, and that’s the exact same material as in the book, except it does have videos and interactive questions. I like kids to have a book, but it just depends on what parents want.

And as far as getting ahold of me, um, they can email me on my website. I’ve got my email there. If they go to the very bottom of the page and hit contact, it’s simply  Kirt, K-I-R-T, which is [email protected]. They’re welcome to email me.

All right. Excellent.

Thank you.

And, and again, we’ll, we will put the, the, the links for all of that.

Except, except for the email. We’ll just leave that on the website so you don’t get spam. But, but we’ll, we’ll have all of those links on the bottom. Sure.

So. For this season, I’m trying out an experimental segment called A Day in the Life. And, um, and  Kirt’s agreed to answer a couple questions on this. So, um, this is listeners, this is just a way for us to, to get to know who our guest is a little bit differently from just the, the straightforward questions that, that we went through.

And, um, and I thought it might be helpful, especially in this one, to get kind of an idea of what. For, for your teen especially to kind of hear what an adult life is like whenever we are actually living it. Um, so  Kirt, could you share your morning routine for us? Like how do you stay organized and productive throughout the day?

You know, I get up at about 5:30. By 6:00 I’m working, and I spend that time. I’ve learned that my good time to work and my energy is like from 6:00 to 4:00. So in the mornings I immediately follow up by email with a number of people, whether it’s on LinkedIn, to have a Zoom call with somebody, with a prospect.

Or like yesterday for example, I had somebody from the state of New Jersey, the Workforce Readiness. We’ve been, you know, going back and forth. I’ve emailed them a couple times, haven’t heard back. So. And this is a good, good tip for, for young adults. If somebody doesn’t respond by email, give them a call. So I called, left a voicemail, I’ll call again in a week.

So, you know, try different methods and I’ll do a lot of, um, just connections that way. And then normally there’s something that comes in that I have to work on, whether it’s an order. Or maybe something went wrong with my website and you can, I think, relate to this and you spend a little time fixing that and you get the order processed and you know, like for now I’m setting up a landing page for my online course.

So, you know, you’re trying to do multiple projects as a solopreneur. Um, you know, an author. So you’re just trying to do probably 10 things in one morning to keep everything flowing and then just calling some people you haven’t talked to in a while that were prospects or customers just to see how they’re doing.

So that’s kind of my life. I check my Amazon page, make sure everything’s correct on there, um, because sometimes that can get hacked. So I’m looking into that quite a bit. That’s kind of my, kind of my morning, if that makes any sense.

So, what’s your favorite part of the day?

I like the morning. I love talking to people like you and I have been talking.

I really enjoy learning about different people. Like you told me about Wegmans, which was such a coincidence that I was talking to my friend about that last night. So that really is my favorite part. Getting on Zoom, talking with people in different, um, states and sometimes different countries. I’m talking to a woman with a screen-free nonprofit.

Um, to help kids on Friday, and she’s from Sweden, so it’ll be very interesting.

Oh, wow. Yeah. All right. Give us one more, um, shout out for your website,

www.smilethebook.com. No spaces smilethebook.com.

Excellent. Excellent. So listeners leave us a comment if you, if you buy the book or the course, give us some feedback and I would, um, strongly encourage you to go on to Amazon and leave a review for him.

If you do purchase the book. Um, ’cause I know it does, it does help with, um, with future purchases for him and to help other people find it.

Kirt, I’ve really enjoyed this. I know the information that you’ve shared has a lot of parents thinking right now what, their next move might be, and I hope a lot of them will check out your book and purchase that.

But thank you for being here today.

You’re welcome, Tonya. Thank you so much. that was so nice to talk with you. Thank you.

What incredible insights from Kirt. I hope you found those tips as valuable as I did. If you’re ready to equip your teen with the essential social and job skills they need to succeed, be sure to check out Kirt’s book, SMILE & SUCCEED for Teens. You can also find a link in the description, and I’ll post the link to his comprehensive online course too.

Thanks for joining me today, and I’ll see you next time.

Q1: What is “Smile and Succeed for Teens” about?

A1: “Smile and Succeed for Teens” is a book that provides essential communication, networking, and interview skills for teenagers, empowering them to build confidence and prepare for future academic and professional opportunities. It’s particularly relevant for teens navigating the world with disabilities.

Q2: Why are communication and networking skills important for teens with disabilities?

A2: For teens with disabilities, strong communication and networking skills are crucial for advocating for themselves, building relationships, and accessing opportunities. They help in interviews, social settings, and even in navigating higher education or the workplace effectively.

Q3: How can teens with disabilities prepare for job interviews?

A3: Preparation is key! Teens can practice answering common interview questions, research the company, and prepare their own questions to ask. Focusing on clear communication, positive body language, and highlighting their unique strengths and experiences can make a significant difference.

Q4: What role does confidence play in a teen’s success?

A4: Confidence is fundamental. Building self-assurance helps teens with disabilities overcome challenges, express their needs, and present themselves effectively in any situation, from social interactions to job interviews. This book aims to instill that confidence through practical advice.

Q5: Are there specific tips for parents helping their teen with disabilities achieve success?

A5: Parents can encourage early exposure to social situations, practice communication skills at home, support their teen in exploring their interests, and guide them in understanding their strengths. Utilizing resources like “Smile and Succeed for Teens” can provide structured guidance.

The post Episode #125: How to Prepare Teens for Real World Success in 2025? appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Living with multiple disabilities presents unique challenges, but it doesn’t mean that life is limited. In this inspiring and practical episode of Water Prairie Chronicles, Tonya sits down with Ally Pack-Adair to explore how she expertly navigates life with cortical visual impairment (CVI), mitochondrial disease, autism, ADHD, and chronic illnesses.

Ally shares her invaluable insights and the ingenious tools and strategies she uses daily to maintain her independence and well-being. From adaptive technology for everyday tasks and sensory regulation tools to the power of music therapy and creative outlets, you’ll discover a wealth of practical advice and a truly empowering perspective.

Learn about:

This conversation is a must-watch for individuals with disabilities, their families, their caregivers, and anyone seeking a deeper understanding of resilience and resourceful living.

Resources Mentioned in this Episode:

#MultipleDisabilities #AdaptiveLiving #ChronicIllness

Connect with Ally:

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Ally Pack-Adair is a dedicated 21-year-old advocate committed to educating others and fostering understanding about various disabilities. Diagnosed with autism (low support needs), cortical visual impairment (CVI), and a type of mitochondrial disease, Ally brings a unique and powerful perspective shaped by her lived experiences.

Living with CVI, a brain-based visual impairment, Ally offers valuable insights into the complexities of navigating the world when visual processing differs. Her articulate perspective sheds light on the distinctions between CVI and ocular visual impairments, contributing to a greater understanding of this condition.

In addition to sharing her experiences, Ally currently serves as an Ambassador with the Muscular Dystrophy Association (MDA). This role underscores her strong commitment to advocacy and empowerment within the disability community. A core goal in Ally’s life is to bridge gaps in understanding by openly sharing her knowledge and personal journey with those who may not have had prior exposure to various disabilities. Her direct and honest communication makes her a compelling voice for disability awareness and inclusion. Through her ambassadorship and her willingness to share her story, Ally Pack-Adair is a passionate advocate working to create a more informed and empathetic world for individuals with disabilities.

Full Transcript of Interview:

Tonya: What if living with multiple disabilities wasn’t about limitations, but about ingenious solutions?

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wallam, and I’m glad you’re here.

In this episode, Ally Pack-Adair returns to share her strategies for not just managing, but truly thriving while navigating life with multiple disabilities.

Ally, Welcome back to Water Prairie.

Ally: Thank you.

So listeners, if you’ve been with us the last couple of weeks, you’ve already met Ally. A couple of weeks ago, we talked about CVI and how that can, can impact your life.

Last week we talked about Ally’s role as an ambassador with, with MDA. Today we’re going to jump into how you can live well with multiple disabilities, and Ally is a pro at this. So she’s gonna give us all of her expert tips today.

And, um, so let, let’s just jump into it. Ally, how do you manage the complexities of living with multiple disabilities?

I have a cortical visual impairment, a type of mitochondrial disease, autism, ADHD, and a lot of chronic illnesses. The list is pretty long. Managing my health day to day can be. Well, different day to day.

I have a home health nurse that works roughly 40 hours a week here. She’s here four to five days a week usually. And for me, she takes care of, um, what’s known as ADLs, activities of daily living, and. Just any of my healthcare needs. I have a feeding tube and a colostomy. She mainly helps me with my feeding tube. I can take care of the colostomy myself.

She’ll help me with my meals. Any of the oral meals that I’m able to eat and my medications, but for the things that I’m able to do, I have a medical planner where I keep track of my doctor’s appointments. Any symptoms I’m tracking. Phone numbers for my specialists and DME companies,

um, notes for doctors, all of those sorts of things. I have a bullet journal separately where I track more symptoms. I use different strategies outside of medications to take care of myself, some of which my home health nurse assists with, such as microwaveable stuffed animals from the Warmies brand. I have one right here.

This is my dinosaur. It’s lavender scented. I like aromatherapy with my essential oil diffuser. Sometimes that helps with nausea and migraines.

I have a weighted lap pad that I’ll put over my legs at night. My home health nurse or my mom actually does it. Because sometimes it’s too heavy for me to position correctly, but that helps with muscle pain and dystonia.

Ice packs are something else I use, but then I also like. I rely on adaptive technology a lot. I think that’s something that’s important for people with multiple disabilities, depending on the disability you have. And that relates to my visual impairments, my neuromuscular disease and autism. There’s different adaptive technology for all of that. And I can elaborate on that more if you would like.

Why don’t you share a few of the things that you’re using?

So specific to my neuromuscular disease, the mitochondrial disease, I have recently bought Adaptive scissors. I can grab them if you would like me to show them to you. They’re right here.

Because my mitochondrial disease is progressive. I’ve been having a hard time lately using regular scissors, and I enjoy arts and crafts, so I’ve been adapting arts and crafts as my hobbies. I can still do it, and these scissors are something I can hold better and still do something I enjoy doing.

Um. I, I have adaptive nail clippers because regular sized ones, I don’t have the fine motor skills to use them.

Adaptive silverware, which I haven’t needed yet. I’ve really bought it knowing that I’ll need it in the future.

Grips on my toothbrush, it’s from my brand called Easy Hold Grips. I highly recommend those for anyone without fine motor, without fully developed fine motor or gross motor skills. It’s one of my favorite tools. There’s so many things like that on my phone. Um, instead of a pop socket, I have this phone loop.

It’s a mainstream product. Um, so it doesn’t have what those people call the disability tax, and you can just hold it like this. It, I don’t drop my phone as easily when I’m holding it like that. I have the essential oil diffuser and air purifier in my room are Alexa enabled, so I can use them with my Amazon Echo as well as the tower fan in my room.

They’re all things that have helped me, um, neuromuscular disease wise. Being autistic. I have, fidget toys. A lot of people call them fidget tools, so they aren’t seen as toys. Around my room pretty much all over the place. They’re in my nightstand on my floor, in a cabinet over there on the kitchen table, on the coffee table, pretty much anywhere.

What is your favorite fidget?

Um, well I don’t have a favorite right here, but this one’s helpful. It’s like one of these mesh marble ones. I keep them in my feeding tube backpack, actually for going out and about. There’s one right here, and to pop it in there because that backpack goes pretty much everywhere with me.

I have Bluetooth noise canceling headphones and an Alexa enabled light bulb in my fan, which that’s really neuromuscular disease specific and autism specific. Um, so I can control the lighting for my sensory needs.

It is really just adapting my environment to make it the best it can be for me.

Sounds like you’ve, you’ve really been able to do some research and find some good tools.

Yes.

You have a few in here that I’ve not seen before. So, um, on your silverware, is it a weighted silverware that you’re using? How has that been adapted?

It’s not. It’s 3D printed. So it’s regular silverware and it has 3D printed grip type things that you stick your hands through. I don’t, I don’t know what brand it is. It’s a small business. I bought it from the Abilities Expo, which is a resource in itself. Honestly, if it’s great for people with multiple disabilities to visit, um.

People with mobility disabilities specifically.

And they travel around the country.

Yes. If anyone hasn’t heard of it, it’s just a big expo for people with disabilities to go to. I was able to visit them in September and receive all of these free resources. I bought that Adaptive Silverware kit, which. I also came with an adaptive key opener, stylus, and something else that I don’t remember and climb an adaptive, um, rock climbing wall, which is something I’ve never been able to do. It was such a great experience.

So did they do it with an extra harness where they’re lifting you or like helping you with the strength of it?

No. It’s a seat. So you sit in a seat on the side of a rock climbing wall and you can pull yourself up with a lever.

Oh, cool.

So you’re along the side of a rock climbing wall, but like you have the.

If there’s like a bar you can pull up on for people with less hand strength or there’s just like one you can pull on, or if you can’t sit in that seat, they can strap people’s wheelchairs in. They have harnesses for amputees. Or then they just let you climb. If you’re able to climb yourself.

As you’re dealing with these different disabilities, ’cause they’re gonna come and go in intensity, I would assume some, some of them are gonna be consistent day to day and some of them are gonna be changing on you. How do you keep your physical and mental wellbeing strong?

With my neuromuscular disease, there’s really no treatments or cures. There’s only preventative things.

I’ve been in therapy, um, in physical therapy on and off, which is something I need to start up again, but physical therapy is something that’s helped me just to retain my muscle strength so I don’t lose any of it.

What about your, your mental wellbeing?

Music therapy is something that’s helped me.

I am on palliative care. I live in Arizona, and so here palliative care is under the same organization as hospice. And so hospice provides free in home music therapy, but I also do, um, virtual music therapy through a nonprofit called the Melodic Caring Project. The Melodic Caring Project is a free organization providing music therapy to like children, teens and young adults, mostly with chronic or life-threatening illnesses.

Cancer. Um, on once a week there’s a group music therapy sessions. It’s one of my favorite things. I really love them. We do music listening, song analysis, art to music activities, private concerts. Um, sometimes we’ll just talk to each other. We, we have one-on-one music therapy sessions, live stream concerts.

And, um, song requests, and that’s pretty much what it is, but it’s one of the best things.

Listeners, we’ll add the link to any of these resources that she’s listing, that we have access to so that you can, can look into that if that’s something that would help you or your child too.

Yeah, I absolutely love them.

In our day in a life segment this time, what are some of the strategies that you use to cope with stress or fatigue?

Well, I use music a lot to cope with stress, being autistic, fidget toys and the likes. I do enjoy arts and crafts. Coloring is a big one for me.

I like adult coloring books, which is ironic because with CVI I struggle with it and it takes me a long time to complete one page. So I’ll often have to come back to the same page, but I find it relaxing. I like to listen to audio books at the same time as doing coloring books.

Do you use, um, any type of magnification when you’re doing the adult coloring books?

I don’t, but I probably should.

Have you ever tried any of the online coloring apps?

I have. It just doesn’t feel the same.

I know. It’s, it’s you, you don’t get the same, the same feel of it. You’re right.

I’m a big fan of Legos. I really like all of the hands-on stuff. Now, Legos aren’t the most accessible thing, but I’ll separate.

I’ll have to do one bag at a time, which I don’t understand why people dump out all the bags at once, um, and then separate them by color and by piece before even diving in, and that’s the only way I’ve been able to do it. It takes me longer than the average person, but I still find it fun and relaxing.

You were talking about fidget toys earlier, uh, or fidget tools. Do you like the ones that are more like a metal type weight or do you like a different texture?

So I have an entire, I have two carts full of them. Two of the rolling three-tiered carts from Michael’s are filled with them, and that’s been the best way I’ve found to organize them so far.

I am not super picky. There’s certainly ones I don’t like. I think the types made out of plastic are my favorite. Tangle toys, if you’ve ever heard of those seem to be my favorite ones.

And for arts and crafts. Now, you mentioned the adult coloring books. What other types of crafts? ’cause you have scissors, so you’re not using that on a coloring book what type is your favorite?

I like making collages out of magazines or there’s all these different books. I think they’re called Cut Up and collage books actually. And they have pictures in them. You simply cut the pictures out and you can make collages out of them. It’s super fun. I do enjoy embroidery.

It’s harder for me. Um, it takes me a very long time. The patterns, like if you’ve ever opened an embroidery kit, they come with paper patterns and I look at those with magnification on my phone. And I have to have someone else thread the needle for me, but then the rest of it I do myself, and it just takes me longer than the average person.

So holding the needle’s not a problem for you then?

No.

Before we go, what’s the best way that our parents can get in touch with you if they have a question?

You can contact me on Instagram at advocating with Ally.

Thank you for joining me again, I appreciate you bringing three weeks worth of high value for us.

Thank you so much for having me.

I’ve enjoyed my conversations with Ally over the last few episodes and hope you have as well. If you found her insights valuable, please subscribe so you don’t miss out on future Water Prairie posts. Next week we’ll be meeting with the author of the book, Smile and Succeed for Teens, so be sure to join us then for tips on how to help your child prepare for the future.

What does it mean to have multiple disabilities?

Having multiple disabilities means an individual experiences two or more co-existing conditions that impact their daily life and educational needs. These can include a wide range of combinations, such as physical, intellectual, sensory, or neurological impairments. The specific challenges and support needs vary greatly depending on the unique combination and severity of the disabilities.

How can I effectively manage complex healthcare needs for multiple disabilities?

Managing complex healthcare for multiple disabilities often involves coordinating with various specialists, therapists, and healthcare providers. Strategies can include maintaining a detailed medical planner, using bullet journals for tracking appointments and medications, and establishing clear communication channels with your healthcare team to ensure all aspects of care are integrated.

What kind of adaptive technology can help with multiple disabilities?

Adaptive technology plays a crucial role in enhancing independence for individuals with multiple disabilities. This can include devices for vision (e.g., screen readers, magnifiers), motor skills (e.g., adaptive grips, voice-controlled systems), and sensory regulation (e.g., noise-canceling headphones, weighted blankets). The best tools are personalized to an individual’s specific needs and abilities.

How can hobbies be adapted for individuals with multiple disabilities?

Hobbies can be adapted through creative modifications and the use of assistive tools. For instance, arts and crafts can be made accessible with EaZy Hold Grips, and LEGO building can be adapted for easier manipulation. Music therapy is also a beneficial way to engage creatively and support mental well-being. Focusing on accessible activities that bring joy and foster engagement is key.

Where can parents find additional support and resources for children with multiple disabilities?

Parents can find support through organizations like Abilities Expo, which showcases adaptive technologies and resources, and The Melodic Caring Project, offering music therapy. Connecting with other families, joining support groups, and exploring national and local disability organizations can also provide invaluable information and community.

The post Episode #124: What’s it Like Living with Multiple Disabilities? appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this episode of the Water Prairie Chronicles, host Tonya Wollum welcomes back Ally Pack-Adair, a passionate advocate and ambassador for the Muscular Dystrophy Association (MDA). Following their previous conversation about Cortical Visual Impairment (CVI), Ally shares her personal journey as an MDA ambassador, offering a firsthand look at what it means to be a voice for the neuromuscular disease community.

Ally details the various responsibilities of an MDA ambassador, from raising awareness and fundraising through campaigns like the Shamrocks Campaign and Fill the Boot, to engaging in crucial policy advocacy, including the fight for accessible air travel. She recounts her experiences speaking with legislative assistants and participating in virtual Capitol Hill Advocacy Days, highlighting the importance of collective action in creating meaningful change.

Crucially for parents of children with disabilities, Ally provides invaluable and actionable advice on how to encourage their children to become self-advocates. She offers practical tips, starting with small steps like answering questions at doctor’s appointments and progressing to researching policies and writing to representatives. Ally emphasizes the power of grassroots advocacy and encourages parents to support their children in finding their own voices.

This episode is a must-listen for parents seeking to understand the impact of disability advocacy and how to empower their children to become effective self-advocates. Ally’s insights and experiences offer both inspiration and practical guidance for navigating the world and creating a more inclusive future.

Connect with Ally:

Resources Mentioned in This Episode:

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Ally Pack-Adair is a dedicated 21-year-old advocate committed to educating others and fostering understanding about various disabilities. Diagnosed with autism (low support needs), cortical visual impairment (CVI), and a type of mitochondrial disease, Ally brings a unique and powerful perspective shaped by her lived experiences.

Living with CVI, a brain-based visual impairment, Ally offers valuable insights into the complexities of navigating the world when visual processing differs. Her articulate perspective sheds light on the distinctions between CVI and ocular visual impairments, contributing to a greater understanding of this condition.

In addition to sharing her experiences, Ally currently serves as an Ambassador with the Muscular Dystrophy Association (MDA). This role underscores her strong commitment to advocacy and empowerment within the disability community. A core goal in Ally’s life is to bridge gaps in understanding by openly sharing her knowledge and personal journey with those who may not have had prior exposure to various disabilities. Her direct and honest communication makes her a compelling voice for disability awareness and inclusion. Through her ambassadorship and her willingness to share her story, Ally Pack-Adair is a passionate advocate working to create a more informed and empathetic world for individuals with disabilities.

Full Transcript of Interview:

Tonya: Do you think your child is ready to advocate for themself? Will they ever be able to have a loud enough voice to make real changes for people with disabilities?

Today’s guest is the perfect example of what an advocate can be, and she’s here to supply you with a list of tips on how you can help your child become the advocate they need to be.

Welcome to the Water Prairie Chronicles, a podcast for parents of children who have disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

You might remember Ally Pack-Adair from our last episode, where she openly shared her experience with cortical visual impairment, or CVI.

If you missed that powerful conversation and want to understand more about how CVI affects individuals, I encourage you to go back and listen to that part of our discussion.

Today, Ally returns to Water Prairie. Not to talk about CVI, but to share about her vital role and experiences as an ambassador for the Muscular Dystrophy Association.

Ally, welcome back to Water Prairie.

Ally: Thank you.

Today’s topic we’re talking about the your role as an MDA ambassador. But before we get into that, the first question I have to ask you is, do you have muscular dystrophy?

I have a mitochondrial disease, which is considered a neuromuscular disease, and neuromuscular diseases fall under the umbrella of muscular dystrophy.

Which means that they are covered by the Muscular Dystrophy Association.

We’re gonna have Ally come back again because I want, I wanna talk a little bit more about this because it does affect life in in general as far as how you navigate everything. But today I wanna talk more about your role as an MDA ambassador.

How did you become an MDA ambassador?

I’m an ambassador for the Muscular Dystrophy Association, also known as the MDA. I was an ambassador for them in 2024, and again this year. I am an ambassador for them in Arizona. They had applications available on their website, and I filled one out and had my interview and was accepted.

It was just a long Google Forms with lots of questions and some essay questions and references, and then an interview.

Congratulations on being chosen a second time for this. This is, this is big.

Thank you.

You’ve already done this before for a year, so you know more than someone who’s new to it. What does it mean to be an ambassador?

In simple terms, an ambassador is a poster child. An ambassador is also a self-advocate, an advocate for others, someone that spreads awareness, spreads the mission of the MDA. Helps with fundraising and the initiatives.

How has your experience, your personal experience with disability shaped how you advocate for others?

I think it’s taught me to be more open about other people’s experiences. No one’s experiences as a disabled person is completely the same. And when we’re advocating for other people, we have to take intersectionality into account too. And I’ve tried to take that into account. When advocating for certain policies.

You mentioned with certain policies, what are some of the policies that you’ve tried to advocate for?

Last year one of the biggest policies with the MDA was accessible air travel. With airplanes, wheelchairs get broken every day, um, and the treatment of disabled passengers isn’t the best. Um, that’s not saying a lot, but the MDA and multiple other nonprofits and individuals really advocated last year for accessible air travel.

The first big part of accessible air travel was actually passed on Rare Disease Day last year, and that was a huge accomplishment. I was very proud of being a small part of that. I was only a small part of that last year, but it still felt very exciting.

And was that Delta that came out with the first chair?

So Delta came out with systems in their airplanes to allow wheelchair users to be able to stay in their wheelchairs on board. But other airlines and the TSA are currently working on training policies for handling wheelchairs and disabled passengers. And there are other initiatives and works right now.

I’ve seen some of the campaigns of both advocating for the change and the reason we need it, but also some of the, the postings now of the training that the TSA is going through. And I was thrilled when I saw that starting up. So thank you for your part in that too. It’s it. It is huge and it will go on indefinitely into the future for everyone who comes after you too.

In September, there was the Virtual Capitol Hill advocacy days, and so I spoke to legislative assistants of a couple representatives and senators in my state over Zoom. To advocate for a couple bills and acts that impact the neuromuscular disease and rare disease communities to try to move them through the House and Senate, and that was a very cool and moving experience to be part of something bigger as a constituent.

I had never had such a big experience before, even though I was only able to do it virtually. I liked seeing such a big community come together. It wasn’t just the MDA participating in this, it was child to cancer organizations, epilepsy organizations, and so many more.

It’s always exciting when you can get together with others too and, and then to, to begin to see the changes that are happening.

For our parents that are listening, what’s the best, um, advice you can give them on how they can encourage their children to become advocates?

If you want your children to become self advocates, it just starts with slowly speaking up for yourself, whether that’s at school or doctor’s appointments. Or even just out in public at grocery stores.

If your child is visibly disabled or even has an invisible disability, people are likely going to ask questions. And self-advocacy goes a long way to feel empowered when answering these questions. At doctor’s appointments, starting slow is a way to become a self-advocate. Starting to answer even just one question by yourself instead of the parents doing the entire appointment.

Even if this means just saying your name and birth date, and then slowly working up to answering your pain level, and then. The rest of the questions the Dr. May ask you, practicing social skills for scripting phone calls is a great way to start to become a self-advocate researching policies before you jump into it.

That’s a way that I did it before I even became an ambassador. Writing letters to your senators too. You can do that without having an official ambassador role. You can always write letters and if you’re on social media, this doesn’t just apply to children. If you’re on social media, repost things from advocates and nonprofits and parents, you can write those letters too.

There’s a way to help out our communities and get things done. Grassroot advocacy. Is a thing and so is community advocacy.

Some great points there. I wanna go back to the one, um, one of the first ones that you mentioned were, um, the example of if you’re in the doctor’s office and letting your child answer one question.

Maybe a lot of times, especially when children are younger. Um, but actually it can happen even in high school and beyond.

The doctor or professional will speak to the parent over the child’s head and not talk to the child where the child is the one who really needs to be able to answer it. Would you recommend that a parent repeat the question to their child and let the child answer on their own behalf?

It’s up to you. Honestly. There are multiple ways you can approach this. You can do that. That can shock the doctor, and sometimes that’s the best way to do it, depending on the doctor’s attitude. A lot of doctors have a high ego. I’ve found out as I’ve gotten older, especially if your child is older and the doctors still continuing that when they were a teenager.

And your child is fully capable of answering on their own. If you have a young child and you think they’re ready to start answering questions on their own and becoming their own advocate, you can also talk through how a doctor’s appointment can go while you’re at home. That same scripting and playing, telling them that when a doctor asks a question to you, the parent.

That the child will answer and you can script it out at home, but there are so many ways to go about this and it’s really up to the parents.

Good advice. I like that. All right, so for our a day in the life segment for this episode, I have a couple of questions for you. As an ambassador, can you describe some of your key responsibilities and how you fulfill them?

We have monthly ambassador meetings that are absolutely not mandatory, just encouraged. We introduce ourselves at the beginning of every meeting to meet ambassadors from across the United States and um, the two national ambassadors because not everyone shows up to every meeting and we answer fun icebreaker questions.

Not your tacky ones. Play games, get to know each other and have fun and get any updates about things that are going on. There’s advocacy meetings there. Um, MDA advocacy Office hours we can attend every month to ask questions, tell them the things we need and get policy updates. And then there’s multiple campaigns throughout the year that we can participate in.

One of our biggest campaigns takes place in the spring around St. Patrick’s Day. It’s usually February through April, I believe. I could be wrong about these dates. It’s different depending on what state you’re in, and it’s called the Shamrocks campaign. You may have seen these depending on where you are.

It’s paper shamrocks, typically at grocery stores, restaurant banks, and you can pay usually a dollar or $5 and write your name on the shamrocks. And they’ll be, the money will be donated to the MDA and they’ll hang up on the wall of these establishments. But as an ambassador, we can participate in the campaigns by calling individuals and asking them to donate or calling the establishment and making sure they have everything they need, or even writing thank you letters to the businesses and stuff, and dropping them off.

I participated in that one last year by making a poster and dropping it off to my local KFC. We have the Muscle Walk, which is our, um, annual fundraiser, walk in a couple different states. That one’s super fun. Ambassadors can volunteer there and spread awareness, talk to families. Handout items, just volunteer wherever they’re needed.

I also did that one last year. It was in February. We have Fill the Boot. You may have heard of that one. It’s a very popular campaign. The MDA turned 75 years old this year, and so fill the boot is. Very old. It’s firefighters often standing on corners, but also at events and they will hold out their boots and you can donate money to the MDA.

And I wrote thank you letters for that one last year as well. Those are typically our main responsibilities. Sometimes we get other opportunities as well. Last year I was able to speak on a panel in June for, um, like a young adult advisory committee sort of deal and to pharmaceutical representatives.

You have things to do besides just your own training. And um, and I appreciate you coming on the podcast and sharing with us too because more of our listeners are able to hear more of what’s going on.

Sometimes we get the opportunity to write blog posts or write for the MDAs magazine, which is called the Quest Magazine.

I had the opportunity to write a blog post for them on mental health in December last year.

So you’re getting some great experience.

Yes, and I’ve contributed to their, um, media product guide about accessible products, um, two times. And so I’ve had some really fun opportunities. I’m looking forward to anything I’m able to do for them this year.

If a young person that’s listening to this would like to become an advocate. What would you recommend to them?

There’s a couple ways to become an advocate. You can do it on your own without a nonprofit. I’ve done that before. You can start a social media page. I have an. Advocacy focus social media page, which is always an option.

You can do grassroots advocacy by starting your own advocacy campaign. The MDA has a guide to grassroots advocacy, and it’s not quite neuromuscular disease specific. So if you don’t have intermuscular disease, you can use that guide. And get some ideas from it. Like I mentioned earlier, you can write letters to senators and get involved that way.

That is a great way to get involved, getting your opinion out there, letting them know what you need. You can get involved with nonprofits specific too. Any disease or condition you may have or any disease or condition that you are close to, anything that really calls to you. There’s so many resources out there nationwide.

Some other organizations I recommend are the ARC and Easter Seals. Those are really the two big ones that I’ve been involved with, with advocacy before. I’d say really just get yourself out there and do some research before you jump into something though. Make sure you’re doing something out of your own heart and make sure that you’re doing something with an ethical nonprofit.

If you’re going with someone.

Great advice there. Um, we’ll put the links to the ARC and Easter Seals for their national offices and the, the footnotes here too. And then let’s also link the different fundraisers with MDA so that as people are listening to this at different times of the year, they can, they can get.

In touch with their, their local one, or at least the national organization who can, can get them connected with whoever’s closest to them. Um, before we go, what’s the best way to contact you? If anyone has a question for you,

you can contact me on my Instagram @advocatingwithally, and if you have any MDA specific questions.

You can go to the Muscular Dystrophy Association website and contact anyone on that website.

Well, Ally, thanks. Thanks for being back with us this week. I’m looking forward to talking to you again ne next week. But thank, thank you for joining us today.

Thank you.

I don’t know about you, but I learned a lot from Ally about what it means to be an MDA ambassador. If you found her insights valuable, be sure to click here to subscribe to our channel so you don’t miss future episodes. Be sure to join us again next week when Ally returns once more to discuss the realities of navigating life with multiple disabilities.

Thanks for listening, and I’ll see you next time.

Q1: What does it mean for my child to be a “self-advocate”?

A1: Self-advocacy means your child learns to speak up for their own needs, rights, and desires. It’s about empowering them to make decisions about their life and communicate effectively with others, whether it’s at school, with doctors, or in their community.

Q2: Why is teaching my child advocacy skills important, especially for those with disabilities?

A2: For children with disabilities, developing strong advocacy skills is crucial for navigating systems like education and healthcare, ensuring their needs are met, and promoting independence. It helps them to understand their rights and voice their preferences confidently.

Q3: How early can I start teaching my child advocacy?

A3: You can start building foundational advocacy skills from a young age through simple steps like encouraging them to answer questions at doctor’s appointments or expressing their preferences. The goal is to gradually empower them to speak for themselves as they grow.

Q4: What are some practical steps to help my child become a self-advocate?

A4: Begin with small steps, such as letting them communicate their likes and dislikes. As they get older, encourage them to research policies that affect them, practice speaking about their needs, and even write letters to representatives to express their views on important issues.

Q5: Are there organizations that can help with disability advocacy?

A5: Yes, several organizations offer invaluable support and resources for disability advocacy. The Muscular Dystrophy Association (MDA), The ARC, and Easter Seals are excellent starting points for parents seeking guidance and community involvement.

The post Episode #123: Can Your Child Become a STRONG SELF-ADVOCATE by Age 10? appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Unlock a deeper understanding of Cortical Visual Impairment (CVI)! Join host Tonya Wollum on Water Prairie as she engages in a powerful and insightful conversation with Ally Pack-Adair, a young adult living with CVI.

If you’re a parent of a child with visual impairment, particularly Cortical Visual Impairment, or are simply seeking clarity on this often misunderstood condition, this episode is for you. Ally shares her personal CVI experiences, explaining the crucial difference between CVI and ocular visual impairments in children.

Learn about the daily impact of Cortical Visual Impairment, including challenges with visual processing, the concept of visual clutter, and the importance of contrast sensitivity. Ally offers a first-hand account of navigating the world with CVI, providing invaluable insights for parents seeking to support their children.

Discover practical strategies and resources mentioned in the episode and gain a better understanding of the lived reality of someone with Cerebral Visual Impairment (an alternate term for CVI). This direct conversation aims to demystify CVI and offer hope and understanding to families.

Connect with Ally:

Resources Mentioned in This Episode: (*Some links are affiliate links. As an Amazon Associate, I earn from qualifying purchases.)

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Ally Pack-Adair is a dedicated 21-year-old advocate committed to educating others and fostering understanding about various disabilities. Diagnosed with autism (low support needs), cortical visual impairment (CVI), and a type of mitochondrial disease, Ally brings a unique and powerful perspective shaped by her lived experiences.

Living with CVI, a brain-based visual impairment, Ally offers valuable insights into the complexities of navigating the world when visual processing differs. Her articulate perspective sheds light on the distinctions between CVI and ocular visual impairments, contributing to a greater understanding of this condition.

In addition to sharing her experiences, Ally currently serves as an Ambassador with the Muscular Dystrophy Association (MDA). This role underscores her strong commitment to advocacy and empowerment within the disability community. A core goal in Ally’s life is to bridge gaps in understanding by openly sharing her knowledge and personal journey with those who may not have had prior exposure to various disabilities. Her direct and honest communication makes her a compelling voice for disability awareness and inclusion. Through her ambassadorship and her willingness to share her story, Ally Pack-Adair is a passionate advocate working to create a more informed and empathetic world for individuals with disabilities.

Full Transcript of Interview:

Tonya: Is your child’s vision a mystery? They see, but not like others.

In this episode, we’re learning about cortical visual impairment or CVI, the leading cause of visual impairment in children,

and we’re hearing directly from someone who lives with it every day, offering the understanding and insights you’ve been searching for.

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

This week we’re tackling a topic that can feel isolating and confusing. Cortical visual impairment or CVI.

We’re honored to have Ally Pack-Adair join us to share her personal journey and shed light on what CVI truly means for individuals and their families.

Get ready to gain invaluable understanding and practical insights that can make a real difference in your child’s life.

Ally, welcome to Water Prairie.

Ally: Thank you. I’m happy to be here.

This has been a topic that I have wanted to cover for almost four full years now. I have friends who have children who have CVI, and it’s a topic that having a child myself who’s visually impaired has been a different topic that, so I wanted to.

To bring Ally in so that we could finally understand what this is. And I’m sure we have some listeners out there who either have a relative who has a child with CVI, or maybe they themselves are a new parent and they’re trying to understand it. So, Ally, I appreciate you coming in and being willing to talk to us and help us understand the topic better and to be able to share as a young adult.

Who just happens to have CVI to help our parents understand a little bit more about what that is.

Thank you for having me. I’m happy to share my experiences.

Excellent. Thank you. So the first question I wanted to ask you is, let’s start at the basics. What is CVI?

CVI is a cortical visual impairment, sometimes known as a cerebral visual impairment.

It’s a type of visual impairment that occurs in the brain and not the eyes. So it’s how your brain communicates with your eyes is what’s causing your vision to be different.

It’s a defect in the visual cortex or the occi occipital lobe, typically caused by a brain injury or a traumatic brain injury. It commonly happens in childhood, but common causes of CVI are stroke, near drowning, near sids, cerebral palsy, infantile sleep apnea, CMV, or childhood meningitis. I’m sure there are more, but those are the only ones that come to mind right now.

I was gonna ask, how does that compare with other visual impairments, but you’ve already answered that, that it’s not the eye and I had not realized so many different childhood traumas that can can happen could lead to this.

It’s typically a lack of blood or oxygen to the brain. I know there’s a deeper explanation to it, but I can’t remember it at this time. I am not a scientific expert.

You’ve given us more than, than what I knew before because it’s not a visual impairment that’s a physical eye impairment. How does CVI impact a child’s daily life?

In most cases, it’s defined as still being legally blind. It really depends on the state, if they’ll define it as legally blind for funding purposes, but in my case, I’m defined as being legally blind. It impacts a child or adult’s visual processing.

For the most case, and, um, basically just how they view the world. I can go more into that if you would like.

Because a lot of my listeners are parents of a young, young child. They may have a child who’s not able to communicate with them yet and tell them what’s happening. Does CVI only affect the child’s vision or does it affect any other part of their life?

It’s common for children with CVI and other visual impairments to exhibit stemming behavior that you’ll often see in people who are neurodivergent. Most professionals refer to this as blindisms. It’s a way of processing the world around you when one of your senses are impaired. Now, it doesn’t mean that visually impaired children can’t be neurodivergent.

They certainly can, but this is just one of the behaviors that visually impaired children exhibit. Children with CVI can also get overwhelmed and overstimulated with their environment easily. I know that I often did as a child and still do because of

 the overload of visual information. It’s hard to process visual information when your brain isn’t connecting with your eyes and you can’t process it correctly. There’s the concept of visual clutter. When too many images overlap at once. The best analogy for this would be looking at a Where’s Waldo or I Spy book.

Imagine looking at that all of the time.

So if you’re looking at an I Spy book all of the time, if a, um. If a person with regular vision is looking at an I spy book all the time, that’s kind of like what CVI is like. We have to pick apart our visual information and then we’ll often get overwhelmed.

That’s interesting because I’ve always thought about it like other visual impairments where.

It’s more of like for, for, for my daughter example, our, our listeners are familiar with my family story. So my daughter has low vision. She’s not legally blind, but her vision fluctuates between 20/60 and 20/150, depending on the time of day, the amount of fatigue, the amount of brightness, the amount of, of clutter that’s around her.

And um, and so when she was very young as a parent. It was helpful for me to have an idea of what she could or couldn’t see because it wasn’t fair to try to expect her to do things that were visual if, if they didn’t exist for her. And we had a doctor who had us take sheets of plastic off of a Ziploc sandwich bag and put three of those together.

And he said holding that up was comparable to what she was seeing most of the time. And so I could, as a parent, I could hold that up and watch tv. I could hold that up and, and look around the room to see, all right, do I need to move colors around? Do I need to, to, like, are there contrast issues happening?

Things like that. And it helped me understand a little bit better. It didn’t change Emily at all did not change her life at all. But for me as her mom, it helped me get a better idea of how to help her, what types of toys I might wanna get, things like that. And especially when she started reading, I. The illustrations inside books.

Um, showing that to my mom. She started outlining pictures so there was more contrast so that Emily could see what the picture was to make it easier. And, um, and so I’ve always thought CVI would be a similar type thing. So is the blurriness part of the vision or is it trying to interpret the scene around you and like you’re saying with that I spy book and just.

Trying to isolate certain things or can you explain that?

Yes. So with CVI, there’s also fluctuating vision day to day definitely with visual fatigue, environmental factors. That’s still something that occurs, but it’s important to acknowledge that all visual impairments are different. Contrast is a huge thing among children with CVI.

I know that it was for me, we did use many different strategies to make things high contrast when I was younger and I still do in my day-to-day life. Something that was huge for me when I was younger was using black and white overlays, like using a black place mat under white papers or a black plate if I was going to have, um, like white rice or mashed potatoes so I could see where my food was.

We did outline books when I was younger, but sometimes the clutter on the pages was too much, so we would end up texturing the books instead. There’s obviously different levels of what children and adults can see. And children don’t outgrow their visual impairments. There’s a common misconception that children outgrow CVI children with CVI become adults with CVI.

This is, this is really good information. I, I, I appreciate you, you’ve open openly talking so much. Um, one of the questions that I had for you was from person to person. Can you even compare two people with CVI? It sounds like you really can’t, ’cause it’s gonna be so individual, how their brain’s interpreting what the environment around them is.

You’ve given some good examples of using the, the contrast getting down to those, those high, high contrast items, like even like using a dark plate with the rice or with potatoes or something like that. Do you read braille?

I was taught braille up to a second grade level. It’s not a skill that’s necessary for me.

I do use large print, however. The easiest font for me to read is 16 and 18 point font. I can read things much quicker when they’re in that font with less visual fatigue, less eye straining, and headaches. Instead of braille books, I found audio audiobooks and eBooks very helpful because you can access them in large print in a less expensive way.

I use the book share program. I don’t remember who runs that. And the NLS program, the National Library Service, the National Library Service is a great free program. I’ve been utilizing that since I was in preschool.

Do you use a screen reader?

Only sometimes I use voiceover on my phone if certain apps aren’t accessible.

When I am on my phone, I have an Apple iPhone, and so I have my accessibility settings turned on. I have large print and Zoom turned on. It’s on full brightness. But in my control center, I have the button readily available to reduce the white points. I have reduced flashing objects on, I believe it’s actually called reduced motion.

I have the, um, in the control center, the button for the magnifier, but even with the large text on some apps still don’t have that, and they aren’t accessible. So I use a voiceover in some cases and I utilize the alt text and image descriptions on Instagram. In some cases, I. I’ve used an app that now I can’t remember the name of it.

Where you can, um, video call people and they will help you find things or read things.

Have you used Aira yet?

No, I’m not, I’m not sure what that is.

It’s a similar one to where you’re talking about the seeing ai, but it’s one that a lot of of stores are using now. So I know, um, where I am, the Wegman’s Grocery market has it. I think Target uses it.

There’s some others where when you go into the store. You log into to the Aira app and there’s a live person on the other end who uses the foot, the camera on your phone to help you navigate the store, and so you can tell the person what you’re looking for. They’ll help you walk through and can even compare items in front of you in real time while you’re there.

So if you’re shopping in the produce and you want a green apple, they can help you look to make sure there’s no bruises on the one that you’re holding. When you’re buying it or if you’re trying to find, um, a size large and, and a shirt, they can, you know, as you’re holding it, they’re able to, to look through the camera and look at the different items that you’re holding to help you navigate through that.

I haven’t used it myself, but I’ve done some research on it and I really like the idea of, you know, if you’re not able to take someone with you, to have someone there in real time who can help you with that, and I appreciate some of these stores are paying to have that. That service for you.

That’s very cool.

I’ll have to check that out. Thank you.

Oh, sure. I’ll, I’ll, I’ll send you what I found about it and then you, you may have some other stores there. It’s something we probably should do a segment on the, on the podcast about it just to, to let more families know about it. Listeners, I’ll put that list in the, in the show notes so you can see what, what, what all the resources are.

And we’ll put links for all of the ones so that you can go to their websites to find these too. So Ally, on the, um, we’ve already given them some just by listing this, but do you have any other resources that parents might wanna look into, either specifically for CVI or just that you found useful for yourself between school getting ready for, for life as an adult, things like that?

Is there anything that stands out for you that we could pass on to parents?

I don’t know of anything specifically for CVI. Not to say that there’s not anything, I’m sure there is. I believe this one is either for ages birth through 21 or for ages three through 21. But the Seedlings Book Angel program, that one is pretty great.

It’s through seedlings and it’s free Braille books every year. You get to choose, um, I believe five free Braille books. They also, they have a couple other braille programs through seedlings, but that’s the one that stood out to me. We utilized that when I was younger. NFB runs a free white cane program.

If you can’t afford a white cane, that’s a good program to reach out to for developing orientation and mobility skills for your child. But when I was younger, except for my first white cane, we got mine through Ambu Tech. When they started coming out with the cool colors, I always begged my mom to get a new one.

Before we finish this, I want to, um. To go to a segment, we’re going to start for season four called A Day in the Life. And Ali’s agreed to answer a couple questions here. So we, I thought this be a good way, listeners for you to get to know our, our guest that’s on, but also, um, get a little more advice of, of what you might.

Want to learn about to help your child. So, um, so Ally, if you could explain to us maybe what a typical morning routine is for you.

Yes, so I’ll wake up anytime between six and 8:00 AM I’m aware that that’s a very wide range, but I don’t work, I have multiple disabilities, so I have a feeding tube. I’ll disconnect that as soon as I wake up and flush the feeding tube and get my meds ready for the feeding tube.

I have a home health nurse that is here four to five days a week. I’ll usually wait for her to arrive for me and she’ll do my meds for me, set up another bag for my feeding tube, and my mornings are quite different after that every day. I don’t really have a set schedule. I’ll do your typical morning routine of getting dressed, doing hair, brushing, teeth, all your self-care things.

Ally’s gonna be on the on as our, as our guest for the next two weeks as well. So you’re gonna hear more about some of what she’s talking about.

Yes.

That kind of gives us a start there. What are, um. Let’s see. I wanna ask you one more. What’s one of the biggest challenges that you face visually during the day, or more often than not during the week?

This may not be directly answering the question, but because I’m considered legally blind, I’m not able to drive, and so I would consider that the biggest challenge overall. Being 21 and not being able to drive is quite difficult. When my friends got driver’s licenses when they were 16, that was different.

Um, I got a state ID, they got driver’s licenses. So whenever I want to go somewhere during the week, my options are. To walk the short distance. Not really walk because I’m an ambulatory wheelchair user, but, um, and I live in a walkable town, or to get a ride from someone, which is typically my home health nurse or my mom.

And I can’t, and someone isn’t always available to drive me where I want to go, but another visual challenge for me is reading the things I need to read. Information isn’t always available in an accessible format. I think one of the hardest things for me to read has to be debit cards. That’s probably a silly one, but debit cards are not made to be accessible.

Even if the lines are raised on them. There’s not enough contrast and the numbers are quite small. Honestly, I could fix this and just write down. All the information for my cards, but I haven’t gotten around to it. I suppose if we expand on the money concept, whenever I’m out in public at a store, a restaurant, anywhere that requires paying with a debit card or a gift card.

The machines that you pay on, there’s always a different spot to tap or slide or insert your card, and it’s not very clear where you need to do that. Sometimes you get judgmental looks from the cashiers and I’ll feel like an old person not knowing where to do it, but they’re all built different, the screens on them, where you ins, where you type your pin or sign or.

Everything you do on the screens aren’t high contrast, and there’s not a lot of lighting on them. So that’s a very inaccessible part of life for me. It seems small, but it’s frustrating. I.

Those are some of the things that my daughter and I talk about that the inconsistency makes it hard because you would, if it, especially, most of those payment machines are made by the same company, so I don’t understand why they’re not all the same, but, but you’re right.

Ally, thank thank you for sharing all of this. So we’ve really appreciated you coming in and. Being so open about about your life and about what you’ve learned and what you can share with us. But before you go, tell us what you’re doing right now and the best way that parents can get in touch with you if they have a question.

I am an ambassador with the Muscular Dystrophy Association for the second year. Our next project that we’re working on is the Shamrocks campaign. To support MDA summer camps. If you would like to get in touch with me, my Instagram is @advocatingwithally.

Alright, great. We’ll, we’ll put your, your contact information in the show notes and um, if you can get me a link to the MDA event, I can put that link in the show notes as well.

Okay. Thank you.

Listeners next week we’re gonna be talking more about her role as an MDA AMBA ambassador. So be sure to join us again, um, for the next episode. And until then, thank you for being with us today.

Thank you.

I hope this conversation has provided you with a deeper understanding of CVI and given you some valuable takeaways, but Ally’s story doesn’t end here. Join us again next week as Ally returns to Water Prairie to share her inspiring work as an ambassador for the Muscular Dystrophy Association. You won’t want to miss hearing about her advocacy and the important initiative she’s involved in.

I’ll see you then.

Q1: What is Cortical Visual Impairment (CVI)?

A1: Cortical Visual Impairment (CVI) is a visual impairment caused by issues in the brain’s visual processing centers, rather than in the eyes themselves. It often results from conditions like brain injury, stroke, cerebral palsy, or meningitis, which can lead to a lack of blood or oxygen to the brain.

Q2: How does CVI affect a child’s vision?

A2: CVI impacts how the brain interprets visual information. Children with CVI may have challenges with visual processing, such as difficulty seeing in cluttered environments (visual clutter), needing high contrast to distinguish objects, and delayed visual responses. Many individuals with CVI are considered legally blind.

Q3: What are some common challenges faced by individuals with CVI?

A3: Individuals with CVI often struggle with visual clutter, recognizing faces or objects, depth perception, and maintaining visual attention. They may also experience visual fatigue and find it difficult to navigate complex environments.

Q4: What strategies can help a child with CVI in their daily life?

A4: Strategies include using large print (e.g., 16-18 point font), utilizing audiobooks and eBooks, and leveraging accessibility features on devices like smartphones (e.g., large print, zoom, reduced white points). Minimizing visual clutter in their environment and maximizing contrast can also be very helpful.

Q5: Can CVI improve over time?

A5: While CVI is a lifelong condition, functional vision can often improve with early intervention and appropriate strategies tailored to the individual’s needs. The brain’s neuroplasticity, especially in early childhood, can support this improvement.

The post Episode #122: Cortical Visual Impairment: The Most Confusing Blindness Explained appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this powerful episode of the Water Prairie Chronicles podcast, host Tonya Wollum sits down with a remarkable mother-son team, Lynn and Jonathan Greenberg, to discuss their journey with dyslexia and their inspiring children’s book, “Robby the Dyslexic Taxi and the Airport Adventure.”

Lynn shares her early struggles navigating the education system, facing dismissive educators, and ultimately finding a school that truly understood Jonathan’s learning differences. Jonathan opens up about the emotional challenges of his early years, the frustration of feeling “different,” and how art became his powerful form of self-expression.

Discover how their shared experiences led to the creation of “Robby,” a character designed to empower children with dyslexia and spark important conversations about neurodiversity. Learn about the importance of representation in children’s literature and the incredible impact their book has had on kids who finally feel “seen.”

Jonathan also discusses how he went from a frustrated child, to a student getting his MFA at the School of the Art Institute in Chicago.

Lynn and Jonathan offer invaluable advice for parents, educators, and anyone seeking to understand and support individuals with dyslexia. They emphasize the importance of trusting your instincts, advocating for your child, and recognizing the hidden strengths that come with learning differences.

In this episode, you’ll learn:

(As an Amazon Associate, I earn from qualifying purchases.)

Connect with Lynn and Jon:

Check out this related episode: Episode #40: (Dyslexia Can’t Stop Me!)

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Lynn and Jonathan Greenberg 

Lynn Greenberg is a dedicated advocate for children, particularly those with neurodiversity. Drawing on her legal background, she became a passionate champion for her son Jonathan after his dyslexia diagnosis. This experience inspired her to co-author “Robby the Dyslexic Taxi and the Airport Adventure,” aiming to create relatable stories for all children.

Jonathan Greenberg is an artist and co-author of “Robby the Dyslexic Taxi and the Airport Adventure.” Diagnosed with dyslexia as a child, he found his passion in art, which became a powerful means of expression. Currently pursuing his MFA, Jonathan is committed to creating stories featuring neurodiverse characters and expanding his artistic horizons.

Full Transcript of Interview:

Tonya: What if the very thing your child struggles with could unlock their greatest potential?

Today’s guest, Lynn and Jon Greenberg are a mother and son duo who have navigated the world of dyslexia in a unique way, and they’re here to share their journey and tell you about a new book that features a dyslexic main character.

Lynn is a dedicated advocate for children and neurodiversity, whose journey took a personal turn when her son, Jonathan, was diagnosed with dyslexia.

Jonathan is currently working on his MFA at the School of the Art Institute in Chicago.

Welcome to the Water Prairie Chronicles, a podcast for parents of children with disabilities.

I’m your host, Tonya Wollum, and I’m glad you’re here. 

Lynn and Jonathan, welcome to Water Prairie.

Lynn: Hi. Thanks for having us.

Jon: It’s a pleasure being here.

Tonya: I thought we would start our interview today by talking about your experiences as mother and as as son. In the early years, and then we’ll move into what you’re doing now and what I call the meat of it.

I’ll give you a little teaser. Those that are on the video, this is part of what we’ll be talking about in a few minutes. So if you hear referrals to it, this is, this is what it is. So more, more to come on that. Lynn, I’m gonna start with you. So with dyslexia, a lot of times parents may not pick up on anything.

When did you first start seeing that Jonathan might have dyslexia or maybe you were just questioning that there was something about his learning that was different?

Lynn: Jon is my youngest of four children, um, and so I certainly know that every person, every child has a different learning sort of strategy and for me, I noticed that Jon could remember so many things.

He could remember every Thomas the Tank Engine’s name, but he couldn’t tell you that Thomas started with the letter T, and you know, he didn’t wanna sing the a b, C song. There was just sort of an incongruity, because I knew he was smart. I knew he could remember, but when it came to just trying to spell things or to learn how to read.

It was a total disconnect and I really did not know anything about dyslexia except, you know, I’d heard about it but really didn’t know. And, you know, unfortunately, the, his educators didn’t know what was going on with him. Um, you know, he’s a boy, he’s not that smart, and I sort of had an uphill battle and I had to ask a lot of questions.

And try to do some research and you know, keep in mind, that was before Google and the internet. So I’d go to the library and I’d ask questions and I’d talk to a friend who’s a pediatrician, and slowly it kind of occurred to me that maybe he was dyslexic and I found someone who would test him because the school wouldn’t.

And that’s how we figured out that Jon was classic dyslexic.

Tonya: Our listeners, some of them have, have heard the story with, with the same timeframe with my son. Did you have any pushback from the school that because it was dyslexia, they would not. Give him any, any services or extra help.

Lynn: They not only wouldn’t, they just wouldn’t even test him.

At first, they kept saying I was crazy. You know, he was the problem. He needed to stay back. Right. And I was like, Uhuh, nope. That doesn’t sit right with me. I know it’s not right. And then when I had him tested the school was like, nah, you know, we can sort of pull him out, but maybe we should do our own testing.

I’m like, yeah, too little, too late. We asked you to do that before. And they really, they just couldn’t. And even the learning differences, uh, teacher said to me, I just, I can’t help him. I don’t know enough about dyslexia. And so we had to look around. And there’s a school that’s about 45 minutes away from us that just teaches kids who are dyslexic or have a language-based learning issue.

And, um, we applied and kept our fingers crossed, and then we made a family decision once Jon did get in, you know, had to go about that because as I said. You know, Jon has three older siblings and this was gonna be a drive, you know, and it’s a private school. So we made a family decision that I would drive him and pick him up and we’d eat peanut butter and, you know, a lot of peanut butter.

And we, you know, came together as a family and Jon went to the Windward School, which was a real gift.

Jon: Uh, yeah, I don’t think I’d be where I am today without it.

Tonya: Looking back, do you remember those early years as far as how, how you felt in some of that?

Jon: They were very frustrating for a number of reasons.

Starting off by the fact that me realizing automatically I was quote unquote different from people really threw a wrench in my sense of confidence. It made me angry, uh, it caused me to act out. It caused me to feel depressed ’cause I didn’t really know how to fix it. And before I was diagnosed, I didn’t know.

I, I just thought I was, uh, what everyone was calling me slow. And so once I found out I was dyslexic, there was, uh, like a burst of, oh, it’s not me. It’s something I can’t control. Then came the actual anxiety of, so how do I fix this? Can I even, but. It was a struggle at first, but I’m still glad that I have dyslexia.

’cause without it, I think I’d be in a far different path than I am now. ’cause it made me want to draw and express myself ’cause I couldn’t with words.

Tonya: I was gonna ask you about the public school setting when you were younger, but you were in a private school. But I do wanna know, Jonathan, you were also.

I’m assuming in community groups or community activities, whether it was church or sports or clubs or something, did you do anything like that when you were young?

Jon: When I was a senior in high school, I was the vice president of the student body, and so I did some student government things. Over the years, past couple of years now, I’ve mostly worked on my practice in art.

I’m getting my MFA. And I’m working on this future book. So prior to that I was in charge of a animation club. We just watched stuff, so it wasn’t exactly like we were animating. ’cause that’s a whole different can of worms. But I’ve done a lot of sort of club activities, events, planning, that sort of stuff.

Tonya: Now those that you just mentioned were when you were older, when you were in elementary age, did you, did you participate in community events?

Jon: Um. Not really. Other than that, no.

Lynn: The school was so far away, it was like an hour away. And they also wanted the kids to participate in, um, different group activities together.

So they would, um, because everybody came from a. Geographic distance. And so all the kids at this, at the Winward School would participate in a, a sport or a club together. And so by the time he got home, it was pretty late. He, he did go to religious school, um, and then afterwards he went, we debated, he absolutely could have come back and gone into the public school, but he.

Was so artistic and expressed himself that way that he ended up going to another private school. So that was his community and that’s what he participated in. A lot of those activities as well.

Tonya: So there, what I was trying to get at was a lot of our listeners, their kids are gonna be in a public school setting and, um, and so you mentioned earlier about some of the anxiety that you were feeling when you were really young with, um, realizing that, okay, now there’s a, there’s a label for this, there’s a reason, but how do I fix it?

Um, I was curious how you interacted with your neighbors or with friends outside of school if you, if you had those, those peer-to-peer interactions when you were younger. Can you think of any situations, well though though you did mention religious school, so you were in an environment that was not a special needs environment where you had that built in support.

Did you, did you have any difficulty in making friends outside of your school or being involved with other activities?

Jon: I mean, yeah, mostly for a few reasons, including the fact that because I couldn’t really read or write that, that automatically threw out a bunch of options of things I could do with people.

But even then, I still just was very easily frustrated because I felt like nothing was going my way. So I like would do things like kick down cans of. Like those solo cups that people were trying to stack into a pyramid. I, I, I was, I was, I had outbursts. I was very frustrated and I didn’t know anyone else who could really commiserate with me.

And while I had parents who supported me at the time before I was diagnosed, they didn’t really know what to do either. So it was a bit of a toss up and difficult. But once we figured out what it was, how to fix it, and I started to show progress, I, I never really had those outbursts again. That’s when I started making friends.

Tonya: I appreciate you sharing that because I think it’s important that we recognize that when we see a child who has “bad behavior,” okay, the assumption. Most of the time is, all right, so you’re kicking over this thing. You’re just a mean kid, you know. But if we can look behind the behavior and try to see is, is this anxiety, is this anger, is it frustration?

You know, most kids do not just grow up thinking, I’m just gonna be the mean kid, or I’m just gonna be the bully. You know, there’s, there’s usually something behind that behavior, and my challenge to everyone is, let’s see behind it and see what’s causing it. Because what I usually see as a hurting kid, but we don’t always know, there’s not always an easy fix.

It’s not always easy to identify what it is. And you as that child kicking over the solo cups, probably didn’t know yourself why you’re doing it. You just knew you didn’t feel good, and maybe that made you feel better. I don’t know.

Jon: I mean, it didn’t but it in the moment, I thought that that pretty much was my line of thinking.

Yeah.

Lynn: I, I think a lot of, a lot of parents, a lot of people say, you know, how did you know? And I, you know, as we talked about, I, I, you know, watched my other children and, um, sort of saw the difference. But I think it’s really, really important to not just listen to the, to the verbal cues, but the nonverbal cues.

I think there are so many kids who are, have a learning difference. Uh, that are very frustrated because they feel misunderstood or feel that they’re being teased. And I think as you said, you know, I, I think it’s really important to look past that and say, I, I know my child. This kid is not a bad kid. He’s, he’s, something’s going on.

He’s frustrated, he’s embarrassed, he’s something. And I think it’s so important. I always say, please, you know, please listen to, you know, all of it. And, and not just listen, but watch I. And I think that’s so important.

Tonya: We’ve had so many conversations with guests, and we go back to this almost every conversation.

Parents, you know your child better than anyone else. You know that they can be loving children. You know that they have those great connections with you and you’re their best advocate if you can’t speak up and help them. By asking these questions, by getting them connected. No one else can do that for you.

You’ve gotta be the one that starts it because you see that frustration and um, and as a parent, you wanna fix it. You wanna help them find peace. Um, so I mean, I always speak for myself with, with 2, 2, 2 children for very different reasons. We went through very, very similar experiences as, as you’re describing here too.

And it’s frustrating as a parent ’cause you don’t have the answers. However, we’re looking at you today, Jonathan, and we’re seeing that there is an answer here, and this is what I love. So you’ve mentioned that you’re working on your MFA, you’re in Chicago, is that correct?

Jon: That is correct, yes. I going to the School of Art Institute in Chicago.

Tonya: So how did you get into art? How did that start for you?

Jon: Well, it started because. When I couldn’t read or write, the only sort of book that made even limited sense to me were picture books, because I could look at the images and get a rough idea of what exactly was going on in the story was that perfect?

Not by a launch shot, but it was something. And so eventually that sort of urge to find these things grew into something different in that. Soon I wanted to actually create those images that other people couldn’t look at. So I found the best way to really express myself was through my art. And while now I can read and write, that feeling is never really left.

It’s just changed priorities, I guess, into a more important place. And so now my dream is to make work that really connects with. The viewer on a level, a very personal level.

Lynn: I know I’m prejudice, but it’s really, the art is enchanting. The pictures are adorable. And, um, so, so that’s how the story story grew from, from our experiences of, of trying to create more and trying to.

Find a platform for younger children who haven’t seen themselves in some of these books, you know, to see themselves. And as we’ve gone on, we’ve, you know, done readings and, um, book signings. And that’s been the biggest, you know, I. Bit of excitement from everybody. It is like, oh my gosh, I never saw myself in a book.

And there I am. And you know, I feel seen. So we’ve, we’ve been really happy that, that the book has grown into something that a lot of people can appreciate.

Tonya: Well, something I was gonna ask you, Jonathan, is um, why you think it’s important that kids with dyslexia see themselves reflected in characters like Robbie?

Jon: Because it shows them that they’re not alone. When I first. Found out I was dyslexic again. I was, I was happy because I knew it wasn’t, you know what, I wasn’t what people seemed to be putting labels on to me, so, but then it kind of became hit I, I was hit by this. I. Well, now what am I a I, I mean, I clearly, this isn’t something I can control, but how many more people are like me?

Is this just going to be an upward climb by myself? I, I didn’t know, and I was young, and so the whole process was intimidating to put nicely. But as soon as I walked through the school doors and realized that, oh, wait a second, everyone here has some sort of a problem, it just sort of opened up conversations that I.

Uh, you wouldn’t really have anywhere else. So I, I learned not only a lot at that school, but I made a lot of friends who I still talk, talk to today.

Tonya: So I’m looking at the cover here. I don’t know if our viewers can see this or not. What medium did you use to make the pictures?

Jon: Uh, watercolor and watercolor paper.

I hadn’t prior to this, really done watercolor that much because. Many say it is the most cha challenging. I’ve always loved the vibrancy of the colors in watercolor, and I really just wanted to push that for a drawing that was in a book that was supposed to be full of whimsy and adventure. I, I, so I just really wanted to push boundaries, given a sh uh, push my boundaries and give it a shot.

And I don’t regret that at all.

Tonya: Well and you’re able to see the texture paper that you’re using. But I never would’ve guessed that was watercolor. I, I, I’m pretty impressed with that. Listeners, the pictures through this, and I don’t wanna go through the whole thing, but you can, we’re gonna put the link to the book so that those who are looking for it, we’ll be able to find it.

Um, there’s so much detail in there, especially knowing now that it’s watercolor that, that’s pretty impressive. I. On that. And the story itself is really a sweet story. It’s, um, it’s fun. Your kids will enjoy hearing the story, um, especially if you have someone into cars and trucks and, and all it’s, um, and planes even show up in this.

There’s, there’s all kinds of things. Um, but I wanted to ask, how did you come up with the taxi and airport theme?

Jon: Well. This woman here was a huge help for multiple reasons. Not only just eating peanut butter and jelly sandwiches while I was going to school for quite a long amount of time. She was the person who got me to school, and that was like a 45 minute drive on a good day.

And so in many respects, without her, I wouldn’t have gotten to that school at all and learned to read and write. So part of the idea of the taxi came from this sort of knowledge that sometimes you need a little, it is from me giving acknowledgement to my mom for everything she did. And also on another note also, this going back to me for years, I couldn’t tell my lefts and my rights apart, and it wasn’t until I sort of learned the little.

Uh, cheat of if you put both hands out, one makes an L and that’s the left and the other makes a backwards l and that’s the right. And so I started using that and now I can tell left to right like anyone else, but because of that, we thought, how would a cab who has trouble figuring these things out, get customers to where they need to go, especially if we can’t read the street signs.

So all of that combined to sort of create this. This character of Robbie. So a lot of personal experience.

Tonya: I like that. So listeners, you just heard a little teaser there. So we have a taxi who can’t read and he’s trying to get to the airport.

Lynn: We were told at the beginning, drop the word dyslexia, and we were like, why?

That’s, that’s our target audience. And, and we were, yeah. So we were so glad that we didn’t listen to some of the. Talking heads and, uh, we kept dyslexia and that’s, I think, been the big selling point, obviously, because people were so excited to, to find out about, you know, this little taxi and what dyslexia is.

Tonya: Well, as, as you say, whether you have a child with dyslexia or not, or have anyone in your life, it’s important that we know what this word means and that we can support those who are, are working through dyslexia. And there’s no, as you see Jonathan here, there’s no reason not to work through this.

Lynn: Absolutely.

Tonya: So parents and grandparents that are listening, um, keep in mind this is gonna be a great idea for a gift for a child in your life. Um. One for your own library to be able to read. If you have any teachers in your life, it’d be a fantastic resource to have on their bookshelf, especially elementary teachers, to be able to have some diversity in their reading so that kids who come through the years can identify with us.

So before we finish the interview portion, listeners, I’ve been giving each of my guests this season a series of statements that they are going to pass on advice to you by repeating the statement and then finishing it for us. And, um, Lynn and Jonathan have both agreed to, to do this for me. So I’m gonna kind of alternate which one I’m asking to repeat for me.

So listen to this, you’ll, you’ll get some ho hopefully some fun and some encouraging tips out of this. So Jonathan, I’m gonna start with you. The first statement is,

every child with dyslexia needs to know that …

Jon: they are not alone. That having dyslexia does not make them any less than anyone else.

That in fact, having it can be a superpower. Some of the most creative people I know all have dyslexia. They have used their, what many called a disability to not only their advantage, but superseded that. And I think you should all know that you are special, you are cared for. And don’t fear the future.

Tonya: We can just stop right there.

That’s, that’s perfect answer right there. But we’re not, so, Lynn, where going to you now?

Lynn: Okay. Hit me with it.

Tonya: You have a little tougher one here. The biggest misconception about dyslexia is.

Lynn: that, uh, someone with dyslexia is not intelligent. Most of the people I know who are dyslexic are so smart, have really superior IQs, and having a learning difference does not mean you are less than.

And that’s the biggest misconception. A hundred percent.

Tonya: All right, Jonathan, back to you. The most helpful accommodation I ever used in school was,

Jon: extra time, because there were a lot of points where even though I could read and write fluently I, it would take a little longer to get through things as opposed to other students and so on things like tests and exams. Having that ability to slow down and take my time. Really benefited me in the long run.

Tonya: All right, Lynn, we’re gonna finish with you with, um, if I could tell other special needs parents one thing, it would be,

Lynn: to go with your gut to really listen to your child.

Um, as I said, you know, the verbal and nonverbal cues Know that your child is special and just really keep. Deciding what that child needs, and don’t let the talking heads, don’t let the educators tell you something that doesn’t feel right for you.

Tonya: Those are all great advice. So listeners, I hope you’re taking notes.

If not, rewind a little bit and listen again so you can get all of that. Before we go though, I want to find out what, so we have Robby the Dyslexic Taxi, and this is your first book, correct? And I say first ’cause I’m expecting more. Do you have more books coming out? What’s, what’s in the works?

Jon: Yes. We are currently in the midst of creating a second book in what we’re calling the Creative Cab Company series.

And I won’t spoil too much, but it will involve characters. You’ve seen this first book. And new ones as well. And I don’t know if you wanna add to that, mom.

Lynn: Um, all the characters we’ve decided at the Creative Cab company are going to have a neurodivergent, uh, issue of some sort. And because not just kids with dyslexia, but this next book is going to talk about ADHD and a character.

You know, our, our new character is going to have that. And we think it’s important for lots of different differences to be seen. And so that’s our goal with this series.

Tonya: Yeah, no, I could see that. So, again, listeners, the website we’re gonna link, but, um, shout out your website, your social media so that we can let everyone know how to find you.

Lynn: You can find us on, on Instagram and Facebook. Our website is also, it’s the creative cab company, um, Instagram and Facebook is also, uh, the creative cab company. So if you just type that in, you’ll be able to find us. Um, and we’d love to, you know, have you DM us or on, on the website itself. There’s a way to get in touch with us and we’d really love to hear what you think and, you know, look forward to different conversations with people.

Tonya: Well, thank you. I, I appreciate you sharing your experiences with us. I know sometimes it’s hard to go back to those early years. A lot of times for parents there might be some, some pain that’s there even for our kids, but it’s so important that our young parents hear these stories today and to know that they’re not alone.

There are others who understand, and as Lynn has said, reach out to them if, even if it’s not about their book, Lynn and Jonathan can give you information that I can’t give you. So if you have questions, send it to them. If you would rather come through Water Prairie, send it to me, I’ll forward it to them and, um, and we’ll make sure that, that you’re getting your answers, whatever they may be.

’cause between us, I’m sure we have enough contacts that we can get you to the right person. So thank, thank you both for being here.

Lynn: Thanks for having us.

Jon: It was, it was quite a pleasure. Thank you.

Tonya: I appreciate Lynn and Jonathan sharing their story with us and hope they’ve given you some ideas through their practical advice. Remember, you are your child’s best advocate, and together we can rewrite the narrative surrounding learning differences. If you found this video helpful, please like, comment, and subscribe for more empowering stories, and don’t forget to check the description for links to their book and other resources.

Thanks for being part of Water Prairie. I’ll see you next time.

Q: How can art be a positive outlet for individuals with dyslexia?

A: Art provides a powerful means of self-expression and communication for individuals with dyslexia, especially when traditional forms of literacy present challenges. It can help build confidence and provide a unique way to process thoughts and emotions, as demonstrated by Jonathan Greenberg’s experience.

Q: What challenges might parents face when advocating for a child with dyslexia in the education system?

A: Parents may encounter resistance or a lack of understanding from educators regarding dyslexia diagnoses and necessary accommodations. It’s crucial to trust your instincts, persist in advocating for your child’s needs, and seek out specialized resources if necessary.

Q: How can children’s books help empower kids with dyslexia and other neurodivergent traits?

A: Books featuring neurodivergent characters, like “Robby the Dyslexic Taxi,” provide much-needed representation, helping children feel “seen” and understood. They can also foster a sense of pride in their unique abilities and promote self-acceptance.

Q: What advice do you have for parents of children with dyslexia?

A: Trust your parental instincts, recognize the hidden strengths and unique ways your child learns, and advocate tirelessly for appropriate accommodations such as extended time. Focus on nurturing their talents and ensuring they feel supported.

Q: Are there more resources available like “Robby the Dyslexic Taxi”?

A: Yes, the “Creative Cab Company” series, which includes “Robby the Dyslexic Taxi,” plans to feature other neurodivergent characters in future books, offering further representation and empowerment for children with various learning differences, including ADHD.

The post Episode #121: How Dyslexia Became This Family’s Hidden Superpower! appeared first on Water Prairie.

Are you a parent of a special needs child? Do you sometimes feel overwhelmed by the challenges of advocating for your child's needs? In this episode of the Water Prairie Chronicles podcast, we talk with Latonya Moore, a well-being coach and advocate for positive self-talk.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Are you a parent of a special needs child? Do you sometimes feel overwhelmed by the challenges of advocating for your child’s needs? In this episode of the Water Prairie Chronicles podcast, we talk with Latonya Moore, a well-being coach and advocate for positive self-talk.

Latonya shares her insights on how to overcome negative self-talk and build the confidence you need to be a strong advocate for your child. She also offers practical tips for managing stress and finding joy in your parenting journey.

Whether you’re a new or experienced parent, this episode has something for everyone. Latonya’s message is one of hope and empowerment. She reminds us that we are not alone and that we have the strength to advocate for our children and create a better future for them.

In this episode, you’ll learn:

This episode is for you if:

Connect with Latonya:

Check out this related episode: EP 94. Finding Calm in the Chaos: Self-Care for Special Needs Parents

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Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Straight to the point and practical, Latonya Moore offers large doses of encouragement while remaining realistic when finding and maintaining a joy-centered life.

She founded Joy in the Ordinary, a well-being lifestyle resource for women.

She’s been featured in Focus on the Family, The Old Schoolhouse, and Kiplinger. In addition, she’s appeared on Slate’s Mom and Dad are Fighting and NPR’s Here and Now.

Full Transcript of Interview:

Latonya: Every special needs parent needs to hear. You are amazing. You were trusted to give life to a unique and lovable child and you were trusted that you would be the best parent for them. Um, and I believe that 100%.

Tonya: Do you ever feel like the weight of advocating for your child is crushing your spirit? That the negative voices, both inside and out, are just too loud?

What if you could learn to rewrite that inner dialogue and find joy in your journey? Welcome to the Water Prairie Chronicles, a podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here. Today I’m joined by a guest who understands the importance of finding joy amidst the everyday struggles.

Latonya Moore is the founder of Joy in the Ordinary, and she’s also a mom who’s passionate about empowering parents.

Latonya, welcome to Water Prairie.

Thank you. Thank you, Tonya, for having me on.

You have so much good information on journaling, and I think our audience is going to get a lot of value from meeting you and seeing what you’re doing.

So listeners, stay with us. At the end, I’m going to have her share a lot more information about how you can get in touch with what she’s doing. and follow what she’s doing, but I want you to hear what we’re talking about first because I think you’re going to learn a lot about what self-talk is and how it can help you, um, or hurt you depending on, on which way you’re using it.

So Latonya, let’s jump into this.

Okay.

Uh, not everyone has ever heard the term self-talk. It might seem self-explanatory, but just in case, can you give me a basic definition of what that is?

Yeah. Self-talk is the way we speak to ourselves. So it’s the thoughts that we have and related to how we see ourselves, how we feel about ourselves, how we think about ourselves, and those thoughts can be positive and those thoughts can be negative.

I think a lot of us. are probably more familiar with the negative self-talk than positive self-talk. I might be wrong on that. I think of self esteem just as, as women especially, a lot of times. You know, we can, we, we can hear those negativities around us. We may compare ourselves, um, especially young women today.

They’ve grown up with social media, the Pinterest, the Instagram, the Facebook, you know, everything just right in front of them all the time. And so I think that can lead a lot of times and men can face this as well, but a lot of times we can, we can picture ourselves in comparison to that image that we see.

Is that what you’re thinking of as far as when we’re talking about self-talk, like, well, what we’re telling ourselves about ourselves?

Yeah. So it’s like what you’ve said, and it’s also the things we’ve internalized from what other people have said about us throughout life, you know, like think back to your childhood.

Someone may have said, Oh, you didn’t do this really, you know, very well. And you hold on to that thought about that particular thing. So when you’re trying to do it again, as a grownup, Those thoughts still pop up like, well, I don’t know why I’m trying this anyway. I’m not good at it. I’ve never been good at it.

I wasn’t good at it when I was six. I’m not good at it now. So it can be from external visual things, but it can also be from external words. And it can also be from internal words. So say that you tried the thing at six or seven and you remember that you didn’t do, do it very well. And now you’re holding on to it because of how you felt about your performance of something that you did when you were a kid and you were just trying to learn something new, but it’s following you around and it’s telling you that you’re not good enough, good at it.

Or maybe not even worth trying.

I think it’s really important that, that we recognize that, that can, can carry a big weight for our kids. Since, since we’re talking to parents here, a lot of our children may have some challenges when they’re in school. Um, a lot of our parents have kids who have learning disabilities.

And so that stands out for them that, that maybe today their child is struggling with this, but if we can put things in the right place, maybe we can start changing that for them.

Yes. Yep. It’s a reminder of not yet. I mean, I’m not able to do this yet and I can keep trying, right? I don’t have to give up to just because it’s not working out right now.

Oh, I like that. I like that. All right. So parents, first lesson today, let’s help our kids have that mindset. Not yet. But we’re going to work on this and then maybe tomorrow it will be. So let’s, let’s keep going there, but I’m going to switch our conversation because I really want to talk to our listeners because I think a lot of our parents struggle with this.

And, um, and I know from my experience, both of my kids have disabilities when they were young and we were going through diagnosis process at a lot of people saying, you know, well. You don’t, you don’t, you don’t need to worry about having a diagnosis. Just don’t tell anybody and everything, everything’s going to be fine.

And so, you know, so I kind of struggled with, you know, do I share this part of my life with anyone? And I got to the point where I realized that if I don’t share this with anyone, I’m going to explode because you can’t pretend one thing and And it’d be something else. And I think we probably have a lot of parents listening who may be doubting themselves.

You know, do I have what it takes to, to help this child, to ask the right questions, to get to the right doctor, to the right teachers. And, um, and so I think a lot of that negativity can kind of weigh us down as well.

Do you have any suggestions for strategies that could help parents that are feeling that type of stress or negativity.

Well, advocating for other people, our children, it does take a lot of effort. It takes a lot of energy. Um, and sometimes you don’t know what you don’t know. And you don’t know which questions to ask. So in that, I want to encourage you to give yourself grace. Um, because None of us know all of the things now, you know, even experts are continuously learning new things to add to their tool, tool kits.

So if they are doing that, then it would also make sense that the parent who’s received a new diagnosis or it’s changed or it’s evolved over time would also need time and space. to figure out some things. And, um, so I do want to, first, I want to encourage you that you don’t have to know everything. And as far as the sharing, I know for myself with my, um, so I have mental health diagnosis.

So for me, it’s easier for me to say, I’m dealing with anxiety. That’s what’s going on with me. Um, because when I’m honest with myself and the people around me are aware that, okay, she is dealing with anxiety, then we can navigate that space a little more easily. Instead of them trying to figure out, like, what’s going, what’s going on with her?

What’s, you know, like, what’s happening? Because this might be, um, outside of how they normally interact with me. When it comes to our children and what they, what they’re going through, you do get to decide if you want to self disclose on their behalf or not. I found that when parents share with me that, you know, my child, is autistic or, um, I have an autistic child, however, they bring it to me.

Um, I appreciate it. I asked them like, what is it that you need for me to do? Like, what is. How can I help support your child? Um, but if they don’t share that with me, right? I’m just going to say, Oh, it’s a quirky little, you know, the child just a little quirky. And, you know, it is what it is. And I mean, and maybe I treat them the same way because maybe there’s coping skills and their tools that they bring with them.

They are able to still manage in the environment that they’re in with me. But if they are having a day like I was having with my anxiety, then I can say, Oh, it’s something a little bit more than what they normally bring. So I find that it’s easier for me. to just be open and honest so that people can meet me where I am.

And I think that could be freeing for the parent also to not feel like you have to hold it all together. Because all of us are unique. I’m not, not to downplay, um, those of us that have diagnosis, but we are all unique. And so we’re all bringing something different to the table. And when we’re open about our differences, it can make it a little bit easier to navigate.

You bring up a good point because There’s something for having a simple name and not have to explain a lot of things. So being able to say, I’m just dealing with some anxiety right now. Most people can understand what that means. If you’re talking with adults, I work in customer service at a part time job.

And I’ll have families come through where they have a child in full tantrum mode because they’re exhausted. They’re hungry. There’s some trigger that’s happening. And as a parent, I see that, but I look at the other customers around them and they don’t see that. They’re seeing, well, this, this kid just needs to be taken out to the parking lot and, and, and having some, some, some discipline because they’re not acting right.

It’s not my place to diagnose. I don’t always know what the situation is, but as you give the example. If a parent could say, you know, we’re, we’re just a little bit overwhelmed right now. We’re anxious right now. Um, my child is autistic. However you want to explain that sometimes that can fill in the gap and take away the judgment that you might be feeling if you can call it something, but it’s not always your place to have to call it something.

I wish we lived in a society where everyone like you would look at them and think, well, they’re just having a bad day right now, you know, or. Or, you know, it’s six o’clock. They need their dinner right now. Their blood sugar’s low. They just, you know, something’s off. But we don’t necessarily as a society look at each other that way.

We look a lot with judgment and we feel that judgment, especially if we’re the parent of a child who is struggling right at this moment. Um, so I can understand the stress. I remember those years of stress, especially when they were young and, um, and feeling all of the looks, even if they weren’t meant that way, I took them that way.

Um, internally and felt anxious myself trying to get out of the situation. There were times where we would leave a shopping cart and just go out to the car and just de stress because I needed it as much as the kids did at that point. But, um, you know, so how. I guess where I’m going with this is, you know, so say, say we’re that parent who’s bringing a child to you and they’re just having an off day, you know, everything’s wrong.

It’s too hot. It’s too cold. The socks are itching our feet, you know, whatever it might be, that’s triggering the uncomfortableness.

How do we find that balance of finding, advocating for what our child needs? but also still maintaining a positive outlook of who we are and how our family is being viewed.

As a Black woman with Black children, sometimes, um, that’s a question that often came up. Like, how do we present ourselves in public so people will not judge us? for how we are in public. So, I remember a time we were, um, I was pregnant. My older daughter, she probably was about two, around two, and we were at a restaurant in Indianapolis, and it was a rotating restaurant, and she was just like very busy and bouncy.

And I had been, so what I had internalized is that kids should be quiet and calm and not be disruptive at such a restaurant. And what was freeing to me, it was, um, It was, it was a white guy. I don’t know like if he was American or from another country, but he said, you know, she is acting the way she’s supposed to act.

Let her just be free. And that was very. much encouraging to me. Uh, sometimes as you stated, um, the world, the society we live in, we have these unspoken rules and we internalize the unspoken rules. But after he said that to me, it really shifted the way I looked at parenting. Like, I’m not parenting for society.

I’m not, I don’t want my kids to be out there causing, uh, havoc across the nation or anything like that. But more so, like, I’m not raising them to make everyone else comfortable. Like, I want them to be comfortable. First, because just as I have anxiety, some of the people I birthed also have it too. And so having to be like, okay, this is how, this is how I process it.

This is how she processed it. It doesn’t look the same. It doesn’t, it just doesn’t look the same. And it’s not fair for me to project onto a child. Um, this certain behavior that they don’t have the capacity for, like they just don’t have the capacity for it. So how do I manage that knowing that someone else can look at this and say like, well, she is just letting this girl have a fit or whatever you want to call it.

But it’s, to me, it’s like, I know, I know our story, I know my family. So, their thoughts have no weight or they have no power. So I tell myself, you know, I am tending to my child. Like, this is what she needs. This is Um, and the adults who are not comfortable with it, they’ll be okay. They, you know, at the end of the day, we all have to learn how to cope.

So if a child having a fit is disturbing your peace, you need to learn how to cope with that. It’s too much for us to carry the weight of our children who need us, ourselves, and then the world as a whole on top of it. It’s going to weigh. It’s going to weigh you down. Um, so my, my suggestion and what I would encourage parents to do is really think about what’s happening in front of them with the person that they are connected to and who they actually care about.

Like, what’s happening. And yes, can the behavior like if you’re already worn down Can a child dealing with stress stress you out? Absolutely. It absolutely can. It absolutely can. So it’s important that parents learn how to give themselves great coping tools and be aware of how you’re feeling at all times so that when your child is going through whatever your child is going through, You’re already in this state of being calm so that it’s not going to make you spin out.

And then you have two people having meltdowns.

And I think we all recognize that we’re going to be in situations where we are stressed. It’s, um, but I do want to ask you, how long did it take you to get to the mindset where you could block out the others and focus on what your family needed and what you needed? Because that doesn’t happen overnight.

It does not. It’s like, it’s, to me, it’s a, probably a lifelong process because first it’s like learning how, so taking in, like, if I, if that man, whoever he was at that restaurant. Wouldn’t have said that to me. I probably, it wouldn’t have tickled, you know, tickled my brain like, huh? She can just be free and I can just let her be a kid.

And then the other part of that, witnessing other people do it, um, Like seeing other, like I have one friend, her kids, they, they used to like run up and down the, the restaurant. She did not care. Like, it did not matter. And I was like, that is freedom. Like, that is freedom. And let’s be free. Now, do you want them to disturb other people’s meals?

Maybe not, but what I noticed, the other people didn’t care. They were like, happy that they were happy. It wasn’t as big of a thing that we, you know, that we make it out to be. So, it, like I said, it, and that was after my kids were past the toddler age when I witnessed my friend doing it. So, taking it, taking in these things like, um, by surrounding yourself.

With people who are, who feel free, who are a little more freer and less rigid, that helps. And I, I really do believe, like, it’s, um, it’s kind of like this lifelong thing because if you do not, if you’re not giving yourself permission to be free, because I think it really starts there, like it’s hard to give your kids permission to be free.

If you feel like you have to be rigid within yourself. So I had to, I think that I was able to hear him. a little bit more because I had also started wanting that for myself too, like not to conform and not to perform for other people. Um, and I think we are taught that whether like growing up, we’re taught how to act in the classroom so that you don’t get in trouble, how to be a good child for our parents, so that they.

Don’t have to fuss at us. So some of that stuff, it does take away our freedom whether we realize it or not, because some of the things that we want to do are not necessarily bad things. They’re just things that are curious. Like we’re curious and we are kind of taught to get rid of the curiosity. So first I would encourage you if you feel rigid inside of yourself and you don’t feel like you’re free enough to say no or free enough to ask questions or free enough to try something that you’ve never done before or free enough to splurge on something that may not actually be considered a splurge.

Um, if you don’t feel free enough in yourself to do those things, it can be hard to give someone else that same freedom. Um, and as you build like your ability to let go of what people want from you or think of you or expect from you, it’ll be easier to then say, well, I’m not going to allow that to be placed on my child either.

Another tool that I picked up was realizing that that our kids are separated from us. They are not us. They are like, they’re, I want us, I really want to say they are not 100 percent reflections of us either. Like it’s very easy to, you know, everyone walks around and say my mini me or my whatever little nickname, nickname, give the kids.

Um, and when we do that to them, We’re kind of doing that to ourselves too because now everything they do, if it’s not good, then it’s like, I must have done something for them to be this way, whatever this way is. And that’s not fair to them, and it’s not fair to you. So remembering as how I would speak to myself is that my child is an individual and I give them space to grow into who they are.

And my goal is to teach and guide them, but, as you shared earlier, we all don’t pick up the information at one time, you know, like all of us get it at different stages in life. Like some of us, as people say, this is an old soul, they must’ve been here before. Like there are people like that out in the world.

Right. And then there are people who. are like, I’m just living, I’m just living, I’m just living my best life and I’m so free. And I don’t know what, why do you want me to learn how to do this stuff? And then they get it a little bit later and they’re like, Oh, this is why I needed to learn these things. And we, we all learn at our own, at our own, um, paces.

At our own paces, or in our own timing, um, and because of that, it’s important for us as parents not to, um, not to hold on so tightly to our children’s wins and their, whatever those disappointments may be, like their wins are their wins, right? And their mistakes are their mistakes.

One of the best things that, um, that Steve and I had when the kids were little, our, um, our in laws actually gave us a parenting program that’s, it was, it was at the time is, I don’t even think it’s out anymore, but it was called Growing Kids God’s Way.

And it started when they were infants with their feeding and kind of getting their routine down, but we read ahead on there and it talked about the different stages of parenting. And so my kids are in their early twenties right now, but around those late teen years, it talked about going into the coaching phase of parenting.

You know, we start early where we say this, they, they, they do this. You know, it’s, it’s, it’s almost like that. You know, if, if, if I say jump, your answer is, is how high, you know? So that’s when they’re little, we’re protecting them from dangers. We’re, we’re watching them. We’re keeping them as close as we can so that they can grow and they can learn.

Our goal as parents is for them to be independent adults one day. They can’t all of a sudden just jump out there and be independent if we don’t give them that freedom to have some autonomy and to decide who they are and to make these choices. And that’s a hard stage for parents whenever they have to start letting go a little bit and letting them be not a mini me anymore.

and make those choices. This is a little individual who is, even at two, when they’re saying no to everybody, they’re practicing some authority that they have about themselves. And the goal of that two-year-old is that they’ll be a 25-year-old who’s on their own one day. and those are, those are some of the harder parts I think of parenting.

It’d be nice if we could just kind of put a leash on them and lead them along and they’d be fine. It might be frowned on by society, but, but it would be easier. Right. All right. Well, before we finish here, I want to go into this season. I’ve been having each of my guests give some advice to our listeners by finishing some open ended statements that I give them.

So I have, I think three or four of them for you. I’m gonna start a statement and then I’m gonna have you repeat it and then finish that statement with whatever advice you wanna give. And if you wanna say a lot or a little, it’s, it’s up to you. Whatever feels right is the right answer here. . So the first one I have is the most important thing I’ve learned about self-talk is …

The most important thing I’ve learned about self-talk is that it teaches other people how to talk to me. When I talk to myself well, um, I exude that and it’s a guide to how other people can treat me.

I hadn’t even thought about that when we were talking about it earlier, but you’re right. If we, it’s almost that if you respect yourself, other people will respect you. Well put. Alright, so number two. When you feel discouraged in your advocacy journey, remind yourself …

When you feel discouraged in your advocacy journey, remind yourself that your efforts will pay off. It can feel hard. It can feel daunting depending on, you know, the situation, but the more you speak up for your child, it will pay off and it will teach them how to advocate for themselves. And I can say that confidently because, uh, it brings me joy when I see my daughters advocating for themselves.

I’m the same way. My kids have come so far. Now they go into their college, they go into their professors, they can explain exactly why they need a certain accommodation and how it has worked in the past and they don’t have any trouble with it.

It’s, I’m very, very proud of them of seeing that and they’re not using it as a crutch. This is, they weigh out whether it’s worth saying anything or not, but that came from years of them watching and listening and being part of those conversations when they were younger. All right, next one. For a special needs parent feeling overwhelmed by negativity my advice is …

For a special needs parent feeling overwhelmed by negativity. My advice is to breathe. Breathing is so important. You know, like sometimes we just hold it all in and it’s so hard to let go and so the negativity is just like settled into us instead of allowing it to just like float by but just stopping taking some time to just breathe.

There are so many apps out there so if you don’t know how to breathe with intention you can find an app that will guide you through breathing practices so that you can let go, let go of what’s trying to latch itself on to you.

I’m going to put a link here, listeners, to another episode. So when you finish listening to this, go back and find this one on some breath work that you could, could follow through with as well.

All right. So last one, every special needs parent needs to hear this. ..

Every special needs parent needs to hear you are amazing. You were trusted to give life to a unique and lovable child and you were trusted that you would be the best parent for them. Um, and I believe, I believe that 100%.

I love your answer to all four of those. So, thank you for sharing that with us.

You are very welcome. Thank you for giving me the opportunity, the opportunity to share. Um, I hope that what I’ve shared will encourage people to think about how they’re speaking to themselves and, um, one tip, because I didn’t, I didn’t share a tip like how to get out of the pattern of speaking negatively to yourself.

Um, but one tip I would love to share about how getting out of that pattern is reframing, reframing what you’re saying to yourself. I homeschooled my daughters. I homeschooled them on purpose, with intention, because I saw who they were and what they needed. Um, they do go to college now, and they do advocate, they do request accommodations as needed, and even as homeschoolers, you can take, you can give your kids, uh, tools, um, to support them in the public learning environment.

Um, but my tip, I mentioned reframing. One thought that used to come to my mind all of the time was, Who do you think you are to homeschool your kids? Like, What makes you special that you can homeschool them? Why can’t they just go to school like everyone else? So that, to me, that’s a negative, that was a negative thought and it hindered me and it would get in my way and it was an obstacle and I would stumble.

And over time, I learned how to say, I learned how to answer that question. So when the thought would pop up and I say, I am their parent, I’m their mom, I am trusted to take care of them. I am going to make sure that they learn what they need to learn. I will not teach them every little thing, but they will know how to find the information that they need to find.

And so instead of letting the thought sit there as this reoccurring thought that was weighing me down. I started to answer it like so as a challenge and then it had nowhere, it had nowhere else to go. It couldn’t just keep beating me down because I knew who I, who, who I was and who I am to be there to, to teach my kids.

So if your thoughts are something like that, Challenge yourself to reword it, like, I am, I can homeschool my kids because I can advocate for my child because I can, whatever it is, because, and then something positive and empowering on the end of the because, um, so when that thought pops up, you can You can knock it down right away.

And if you are like, if you are a believer or if you read the Bible, um, I like to use scriptures to also come up with affirmations. So like, uh, Joshua 1:9 is one that I hold on to. So when I’m feeling like, uh, I can say I am strong. I am courageous. God is with me. I didn’t even have to come up with anything.

It was already written down. I just, I just had to say it for myself and just. Believe it. Um, and I just use it anytime negativity tries to like at the dentist, I am safe. They are not hurting me. I am okay. Um, and that kind of keeps you from feeling so tight and Being so mean to yourself. So, and lastly, be gentle, be gentle. You deserve to be held with care.

Alright. Well, I told our listeners to stick with us till the end. So tell us where, where can they find you? How can they work with you or get involved with what you’re doing? Tell us, tell us all, all, all about Latonya and what you’re doing.

All right. Well, you can find me at https://joyintheordinary.com.

I talk a lot about well being, the way we speak to ourselves, being assertive, um, and listening to our own voices, not just what we think should be true, but what we feel within us that is true and that how we really want to live. Um, you can join. The Joy the Ordinary newsletter, https://joyintheordinary.com/newsletter.

And that’s where you’ll find out about my amazing journaling workshops. I love journaling is such a powerful tool. It definitely helps strengthen that voice when we struggle with being assertive. Um, the more honest we are with ourselves, it is so much easier to go out into the world and be honest with other people in our interactions.

And are you on social media or should they go straight to your website to find your links?

Yeah, I’m on social media. Joy in the Ordinary on Facebook, and @joyintheordinarymom on Instagram.

I’ll put all of those links in the show notes so you can, can get in touch with what Latonya’s doing and follow along, follow along with her. Her website’s fantastic. She has a lot of information there. You’ll see, um, some great blog posts there and, um, and I would encourage you to, to follow her and see, see if you can, can join in with her joy in the morning and continue with that too.

Well, Latonya, thank you. This is, this has been a fun conversation. It’s um, like I say so many times, it’s information that I wish I had had when I was much younger and trying to find my parenting path. But I know we have a lot of parents who are listening who are going to benefit from having heard what we talked about today.

So thank you for sharing this with us.

Thanks for having me on, Tonya. I really appreciate it. It was fun. It was fun just to talk and share.

I always love meeting other, other, other moms.

What a great conversation with Latonya Moore. I hope you’re feeling more equipped to manage your self-talk and embrace your parenting journey.

Remember, you are amazing, and you are the perfect parent for your child. If you found this episode helpful, please give it a thumbs up and subscribe to Water Prairie. We’re here to provide support, encouragement, and practical advice for parents of children with disabilities. And be sure to join me next time when I’ll be diving into the world of dyslexia.

I’ll be talking with a mother and son duo who have written a delightful children’s book about a taxi who navigates the world with dyslexia. It’s a story of celebrating neurodiversity that you don’t want to miss. Thanks for watching and I’ll see you next time.

Q: What is self-talk and why is it important for special needs parents?

A: Self-talk refers to the internal dialogue we have with ourselves, influenced by our experiences and what others tell us. For special needs parents, positive self-talk is crucial for managing stress, building confidence, and effectively advocating for their children.

Q: How does negative self-talk impact parents?

A: Negative self-talk can hinder a parent’s ability to advocate for their child, increase stress levels, and diminish their sense of joy in the parenting journey. It often stems from internalized criticisms or past difficult experiences.

Q: Can self-talk affect how I advocate for my child?

A: Absolutely. Your internal self-talk directly impacts your confidence and approach when advocating for your child. By challenging negative thoughts and reinforcing positive ones, parents can become more effective and empowered advocates.

Q: What are some practical ways to improve positive self-talk?

A: Practical strategies include recognizing and challenging negative thoughts, practicing breathing exercises for stress management, and intentionally reframing negative thoughts into more positive or neutral ones. Focusing on small wins and celebrating progress can also help.

Q: How can I help my child develop positive self-talk and self-advocacy?

A: Teaching children to recognize their individuality and empowering them to advocate for themselves are key. This involves fostering their unique strengths and providing them with tools and opportunities to express their needs and desires.

The post Episode #120: The Power of Positive Self-Talk for Special Needs Parents appeared first on Water Prairie.