Water Prairie Chronicles Podcast

How Families Can Ensure Their Child with Disabilities Has a Secure Financial Future

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In this episode of the Water Prairie Chronicles, your host, Tonya Wollum, speaks with financial planner Amit Chawla about the importance of financial planning for special needs children. Drawing on his personal experience of having a son with a disability, Chawla highlights the need for proactive planning to ensure that parents are adequately prepared for their child’s future financial needs. He provides valuable information on government benefits such as Supplemental Security Income (SSI) and Medicaid, as well as misconceptions about financial planning for individuals with disabilities. Chawla emphasizes the importance of seeking guidance and resources from government agencies and nonprofit organizations, and planning for the worst-case scenario. He also suggests finding other ways to fund their child’s needs, such as utilizing resources like nonprofit organizations or community support. Overall, Chawla’s interview underscores the crucial role financial planning plays in ensuring that families with special needs individuals can provide the best care and support possible.

Connect with Amit:

** My Special Financial Planning is a Financial Planning service for the Special Needs community. Pro Bono if you are not earning over $100K/year individually or $125K/year as a family, and have savings of less than $250K.

Waiver programs:  https://www.kidswaivers.org/, It provides details of all waiver programs (by state) for children with disabilities or medical needs. Some of these waivers consider family income and some don’t. 

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Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

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

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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/

Amit Chawla is a Software Product Manager and founder of My Special Financial Planning, a financial planning company that focuses on special needs families. He and his wife, an Estate Planning Attorney, have two boys and reside in Lexington, Massachusetts. Their oldest son is 13 years old and has Autism, which led Amit to become a certified financial planner and chartered special needs consultant. Amit’s goal is to help families with special needs members plan for a better future. He volunteers for a couple of non-profit organizations to provide pro bono financial planning services, and he and his wife moderate a private Facebook group called Planning for Special Needs. Amit shares openly about his experience with raising a son on the severe side of the Autism spectrum and how it led him to become a passionate advocate for special needs financial planning.

In episode 59 of the Water Prairie Chronicles, financial planner Amit Chawla speaks with Tonya Wollum about the importance of financial planning for individuals with disabilities. Chawla shares his personal experience of having a son with a disability and realizing that financial planning is crucial for supporting his family in the long term.

Chawla notes that individuals with disabilities are entitled to free and fair education until age 22, and that there are various government benefits that can help cover costs. However, parents must be proactive in seeking guidance and resources from government agencies and nonprofit organizations. This is especially important for families who may face financial challenges in providing the support their child needs.

One of the government benefits discussed in the interview is Supplemental Security Income (SSI), which provides financial assistance to people with disabilities who have limited income and resources. Chawla explains that a child must be diagnosed with a disability to be eligible for SSI, and their income must be below a certain limit. Before a child turns 18, their parents’ income is deemed towards them, which can affect their eligibility for SSI. The interview also covers Medicaid, which is another government benefit that provides medical insurance to people with disabilities or low income. Chawla notes that many states have Medicaid waiver programs, which do not count parents’ income for their child to be eligible for Medicaid.

Chawla also addresses common misconceptions about financial planning for individuals with disabilities, such as the belief that having a lot of resources is sufficient for long-term financial security. He explains that even wealthy individuals cannot rely solely on their own resources and that there are many programs and resources available to support individuals with disabilities. He emphasizes the importance of seeking help and guidance and having an open heart and willingness to learn.

The interview also touches on educational purposes, and Amit notes that any funds put aside for a child’s education must be used for educational purposes. In addition, he suggests spending the money on the child’s needs to avoid any legal complications.

The conversation ends with a discussion on the challenges parents may face when securing financial support for their child. Chawla suggests working with a professional to determine how much money the child may need in the future, and planning for the worst-case scenario, assuming that the child may not receive any government benefits. For those who are not able to earn enough, Chawla suggests finding other ways to fund their child’s needs, such as utilizing resources like nonprofit organizations or community support.

Overall, the interview with Amit Chawla highlights the importance of financial planning for families with special needs individuals. Chawla provides valuable information on government benefits such as SSI and Medicaid, and suggests proactive planning to ensure that parents are adequately prepared for their child’s future financial needs.

Families who have a special needs child must plan for the future early on. The journey of caring for someone with special needs is often lifelong, and financial planning plays a crucial role in ensuring that the child receives the best care and support possible. Even families with limited resources can benefit from seeking help and guidance from government agencies, nonprofit organizations, and qualified financial planners who specialize in special needs planning.

Amit Chawla’s personal experience with his son with a disability makes him an ideal resource for families who are starting their financial planning journey. His emphasis on proactive planning, seeking guidance, and finding other ways to fund their child’s needs underscores the importance of financial planning for individuals with disabilities.

The post Episode #59: Financial Planning for Special Needs Children appeared first on Water Prairie.

Show Notes:

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In this inspiring and heartwarming episode of the Water Prairie Chronicles podcast, Tonya interviews Jennifer Varanini Sanchez and her daughter, Sofia Sanchez. Sofia, who has Down Syndrome, is a child model, actress, and voiceover actor. Sofia and Jennifer share about their experience filming the Hunger Games movie, The Ballad of Songbirds and Snakes, and some of Sofia’s favorite memories of being on set. The conversation also touches on their experiences traveling to multiple countries and immersing themselves in the local cultures. Sofia’s achievements in modeling and acting have inspired and given hope to many parents of children with disabilities who believe that their children can achieve their dreams.

Jennifer and Sofia talk about how they began working with children’s book author Margaret O’Hare to write four children’s books that promote inclusion, acceptance, and love in families, regardless of what they look like. Jennifer and Sofia’s story is one of resilience, passion, and hard work. Their experiences in modeling, acting, traveling, and writing have shown that anything is possible with determination and support. The episode is a must-listen for anyone looking for inspiration and motivation to pursue their dreams, no matter their circumstances.

Connect with Jennifer and Sofia:

The Iceland Project Information:

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Resources for Down Syndrome Families:

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Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

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

Get a BONUS entry by answering some questions about this podcast episode: https://forms.gle/Lwo6B8cH1Drw8dyR8

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/

Jennifer Varanini Sanchez is the mother of 4 busy teenage children, two of whom have Down syndrome. She’s a makeup lover and a Down syndrome and adoption advocate.

Sofia Sanchez is a 14-year-old actress, model, and Down syndrome advocate of Ukrainian-American descent. She made her acting debut in the television series, Switched at Birth, and has since appeared in a variety of productions, including the films For Paloma and The Ballad of Songbirds and Snakes. She has also been featured in print ads and commercials for prominent brands like Old Navy and Target. Sofia’s inspiring adoption story has been the subject of several Scholastic picture books, including You Are Enough and You Are Loved.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: In this episode of The Water Prairie Chronicles, we continue our conversation from episode 57 and chat about Sofia Sanchez’s role in the Hunger Games movie, the Ballad of Songbirds and Snakes, a new book about Sofia and other exciting projects this teen model, actress, and voiceover artist has going on.

Join me for this inspiring conversation. With Jennifer Varanini Sanchez and her daughter Sofia, as they share their journey of breaking down barriers and achieving success in the entertainment industry, get ready to be inspired by Sofia’s confidence and professionalism and learn how she is making a difference as she proves to the world that different is beautiful.

Tonya: So I wanna, I wanna talk to both of you a little bit about the new Hunger Games movie now that’s coming out in November, if I remember correctly.

Jennifer: Yes. You wanna tell when it’s coming out?

Sofia: It’s coming out November 17th

Tonya: November 17th,

Jennifer: 2023.

Sofia: 2023

Tonya: Wow. That’s coming up pretty soon. Are you getting excited?

Sofia: I’m so excited.

Jennifer: Yes. We don’t know what we, you know, we won’t have seen the movie until you do, so it’s very exciting.

Tonya: Right. And when we first connected, it was before you had just gotten the role, I think, or it was maybe before you got the role back in the summertime and or before you announced it publicly. You, you, you probably already knew at that point. And then you were gone for what, three or four months, I believe?

Jennifer: Yeah,

Sofia: Four months.

Jennifer: Four months.

Sofia: Yep.

Tonya: So, um, so let’s back up a little bit. Um, Jennifer, when did she start modeling?

Jennifer: So, Sofia has been modeling since the day she entered our family. She is a very photogenic little girl. Um, so, but her first job was, I wanna say when she was probably four. Um, and. It was a job that was like kind of a social media campaign and we realized how photogenic she was.

So an agent was like, we think she has like a career in this.

Tonya: Wow.

Jennifer: So we got an agent that specializes in, um, people with disabilities. So a diversity talent agency, which is down in LA called KMR Diversity, which still exists. And she’s still with, um, and that had really catapulted her career because they were known for finding, you know, filling roles in campaigns for major companies that were looking to be more inclusive in their advertising.

So, She quickly became Target’s little darling who was doing, she did a ton of Target commercials and she, she’s posing right now, I think. And, um, then we went on to, yeah, she’s been pretty much, we’ve checked boxes off all the major retailers. You know, Old Navy, Athleta, Abercrombie, Gap, American Girl, Pottery Barn here.

What, like, the list goes on and on. Um, But it wasn’t until she was, I think, gosh, I always get this age wrong and I should know this, but I wanna say early elementary, she was cast in a TV show called Switch At Birth. Okay. Which, um, was a very popular ABC Family TV show that featured characters that were deaf.

Um, and there was a lot of sign language on this show, and she was cast in a really important role. Um, and that when she did that, you know, it was a different kind of thing. It’s not taking pictures, it’s actually doing what the director wants you to do and having lines at a very young age, and she was excellent.

And the director said he’d never seen anyone who was so natural. Um, and that, you know, even typically developing children had difficulty with the things that they a, that they asked her to do that she didn’t have trouble with. So we quickly learned that this was something she was maybe born to do, um, and has a special talent for it.

So, as a mom, when you know that your child has a special talent, you try and find more opportunities for them to blossom. So that’s what I, and she enjoys it and has so much fun.

Tonya: So do the two of you work together to help her get ready for her roles or does she do it all by herself now?

Jennifer: Well, in the beginning, well I, obviously I’m her mom and I coach her and help her.

Um, and, but for the Hunger Games movie, it was the first time she knew her lines. Quickly and easily cuz she reads and she’s able to understand scripts, um,

Sofia: I read scripts.

Jennifer: She loves to read scripts, she loves reading plays. So that was easy. She understood her lines and it was the first time I decided she’s 13.

This is a big movie. I’m gonna take a step back and let her do this on her own and just, See what happens. And it was very hard as a mom to let go and to like let go and trust that it’s all gonna work out. So I sat with the rest of the moms. There were four kids on this, on the, there’s only four children that are under 18 in the movie.

And so I sat with the rest of the moms of those kids and did what any typical mom would do and just look at a screen where you can’t hear anything. You don’t know what is happening out there. You could see a picture and. She would, she would nail it so quickly she’d be back from her role. You know her

Tonya: Wow.

Jennifer: Little part. And I’d be like, that’s it. She got it. And they’re like, yeah, she got it. So, um, she, she’s an expert at this stuff. She’s a pro.

Tonya: That that is, that is a gift. You’re right.

Jennifer: No fear of people, cameras, situations. Yeah.

Tonya: So Sofia, can you tell us a little bit about the movie? I don’t know what you’re allowed to say or not say, but, um, but what can you tell us about the movie itself and the character that you played?

Sofia: I played Wovey, and it was the Ballad of Songbirds and Snakes. I was so excited to this huge movie for this community I’m doing and

Jennifer: tell her what district Wovey is in and what are you as Wovey, what is Wovey?

Sofia: She’s is in District 8,

Jennifer: she’s in District 8 and she’s a tribute

Tonya: She’s a tribute, and I know Tributes,

Jennifer: you’re one of the tributes, so that’s what she can say is she’s one of 24 tributes.

District 8. If for those Hunger Games fans’ know what we’re talking about. She’s from District 8 and she is, yeah, her name is Wovey. Can you tell them what’s in the district? What’s District 8 known for?

Sofia: Um,

Jennifer: textiles and fabric, which is why her name is Wovey.

Tonya: Okay.

Jennifer: Woven,

Tonya: right.

Jennifer: Yeah.

Tonya: Right. Interesting. Okay, so I’m, I, I’ve seen some of the movies, not all of them, but, um, my daughter loves them and so we’ve watched some with her and um, so I think we’re gonna watch it together whenever it comes out. So I’m looking forward to it as well.

Jennifer: And the books are really good too. Like if you were like reading.

Sofia: Should I get the book?

Jennifer: Oh, it’s okay. No it’s okay. She was gonna say, can she show you? So it’s all the movies are based off the book. So that’s fun too because Sofia was able to read the story as well as we just started watching the movies ourselves. Cuz this, this movie, the Ballad of Songbirds and Snakes, it’s a prequel, so you don’t necessarily have to be familiar with the Hunger Games to watch it, which is nice.

So it’s like the beginning of the story.

Tonya: Sofia, um, what’s your favorite memory of filming the movie?

Sofia: When I was filming, I was, Excited to do it and I was not nervous, but my favorite part of the movie was meeting the people.

Jennifer: Yeah. Who did you meet? Tell her the people you met.

Sofia: I met Rachel Zegler.

Jennifer: Uhhuh. Who else?

Sofia: And I met Peter Dinklage,

Jennifer: Peter Dinklage,

Sofia: and Viola Davis.

Jennifer: And who was your director that you love?

Sofia: The director, I loved Francis.

Jennifer: Francis Lawrence. So, I think what she, what she talked about and what she enjoyed the most, I, what I saw as a mom was meeting so many different people from around the globe really. And she got to know them pretty well because we were together in foreign country for so long,

Sofia: and also I met Kaitlyn Akinpelumi.

Jennifer: Uhhuh. And you also met Hunter Schafer.

Sofia: Oh yeah.

Jennifer: And yeah, just like lots of, and then your favorite thing was meeting your, the other kids.

Sofia: Oh yeah.

Jennifer: She got to be kind of like really close friends.

Sofia: I got to meet Luna, Cooper, and Knox.

Jennifer: Loved the kids. Yes.

Tonya: Did the four of you spend a lot of time together?

Sofia: Yes, we did.

Tonya: So I’m, I’m sure you’re staying in touch afterwards now.

Jennifer: Yes. Very close friends. And the other fun thing was being in a foreign country, what did you get to try and taste all the time?

Sofia: All the different kinds of food.

Jennifer: All the different kinds of food. Yes.

That’s always a highlight for Sofia is the food.

Sofia: Yes.

Tonya: Now I was, I was following your adventures a little bit while you were over there cuz you were posting on social media and it looked like you were traveling in a lot of different countries. So, Sofia, what was it like traveling to so many different countries?

Sofia: I like traveling and it makes me happy when I travel with her. Because we went to to the countries, but we went to .

Jennifer: We went to so many countries we can’t give it away cuz that’s one of our truths. But um, we went to so many countries and learned culture and again, food and different

Sofia: We also got to see like German

Jennifer: Oh yeah we got to hear different languages. That’s very true. Yes. She said she got to hear German and French. And

Sofia: Oh and Portuguese

Jennifer: oh yeah.

Sofia: And Ukrainian.

Jennifer: Mm-hmm. Some Ukrainian, some Polish. Mm-hmm. We went to London and saw lots of plays, so we just took advantage. Wanna tell about that?

Sofia: Oh yeah, so at first I saw,

Jennifer: Oh she’s talking about the theater. We went to the theater district in London and saw a lot of plays because, you know, it’s such a big culture in Europe to. To go to live theater instead of the movies. So we took advantage of that.

Sofia: And the next one was Life of Pi was also, but Puppet. Mm-hmm. And the other one was Matilda.

Jennifer: We saw Matilda.

Sofia: I love Matilda. We also saw Mama Mia.

Jennifer: Uhhuh.

Sofia: It was also my favorite.

Jennifer: And then Six.

Sofia: And then Six. There you go.

Tonya: Wow.

Sofia: And my was

exactly,

Jennifer: And then in Hungary, we went to the baths in Hungary.

Sofia: Oh yes.

Jennifer: And we went to a ballet in. Um,

Sofia: It was called Swan Lake.

Jennifer: In the Czech Republic, we went to Swan Lake.

Sofia: Yes.

Jennifer: So, yeah, we just did, we immersed ourself in culture.

Sofia: We had fun.

Tonya: Nice, nice. I mean, it was a long time to be away from home, but it sounds like you were making the most of being there.

Sofia: Yes.

Jennifer: And we were so fortunate to have the family come and visit a couple of times. Um, and then we got to see family and friends even came all the way to visit. So, Um, and you know, with the, with the way the world works with FaceTime and stuff, you never feel that far away. You know, you can connect real easily daily.

So we did that. So we figured this is, this is a once in a lifetime thing. Let’s just enjoy it. And you, you know, utilize, this is an opportunity for world. I called it World School. You know, so, yeah.

Tonya: So, Sofia, how did you face some of the challenges that you had during filming? Or did you have any challenges, and if so, how did you overcome them?

Sofia: Well,

Jennifer: was anything hard for you or was it all easy?

Sofia: There was one thing that is hard for me, I cannot see in the dark. It was like, it was,

Jennifer: it was a scene. It was dark. And what, how did you conquer that? How did you face her fear?

Sofia: I faced my fears. I took a deep breath, and I let it go away.

Jennifer: She took a deep breath and just

Sofia: let it go.

Jennifer: Let her fear go and

Sofia: And I did it.

Jennifer: Yep. Did it.

Tonya: That’s good advice for anyone going through something that they’re afraid of. Sofia, how did you balance your filming and keeping up with your schoolwork for all those months?

Sofia: Well, it was.

Jennifer: You had a teacher on set,

I had a

Sofia: teacher on set, and

Jennifer: in your breaks. What did you do?

Sofia: Breaks… reading is one of my favorite things to do like on breaks when I’m on set or not on set because

Jennifer: the teacher would come and make sure, yeah, he would come. So part of being on set when you’re a child, that’s mandated by law, I think, to have a, a teacher on set. So she didn’t miss any school. Um,

Sofia: I couldn’t miss it.

Jennifer: So the kids would all get together and do their homework or, you know, work on certain things. But again, we used it as an opportunity to. Almost like a homeschool, but in a different country. And so we would learn all we could about each country. And um, so yeah, I think she got a better education in those couple of months than she would’ve gotten in the class, the classroom, you know? So we didn’t miss,

Steve: probably so.

Jennifer: Yeah. And the minute we got back, she went immediately into her regular school again and didn’t, again, didn’t miss a beat.

Sofia: Yep.

Jennifer: She was so happy to see everyone.

Sofia: I was happy.

Tonya: Um, Sofia, what are some of your goals for acting in the future?

Sofia: I want to do more movies and do more modeling and do more acting. Cause what I really want is to do modeling and acting myself.

Jennifer: Do you prefer movies or tv?

Sofia: I want to do movies, because most of my favorite things do is act.

Jennifer: Mm-hmm. And maybe musicals.

Sofia: And I love doing musicals too. Different … those two makes me happy. Cause my goals are guess happy.

Jennifer: And you’ve got some books too, right?

Sofia: Yeah, I’ve got some books.

Jennifer: That’s another thing she does is she, we help write some books. Right?

Sofia: Yeah.

Jennifer: Based on your life, so keep living your life.

Tonya: With the movie coming out and having Sofia representing the Down community, what’s your hope that the movie. How do you, how do you hope that it’ll impact audiences?

Jennifer: What’s really cool about this movie and Sofia being in it, is that the role of Wovey that she plays is not necessarily a character with a disability.

So in the book, it’s that there’s no disability on this particular child. So the fact that the casting agent decided to cast Sofia, I think is kind of groundbreaking because they cast her and there’s no mention of her disability. She’s not, the disability is not the focus. She is an actress playing the part of Wovey and she just happens to have Down syndrome.

So I think it’s gonna be mindblowing for a lot of the audience that’s not expecting it to see that. And also just see, again, she’s capable, she, she’s a child just like everyone else in this movie are, you know, cause in the game, So in the mo, in the Hunger Games, it’s basically children are put into this game scenario and why not have a child with a disability that gets called to be in this game?

So it’s kind of like equal opportunity. Um, and so I think it’s just gonna be really cool because it’s not like in your face, it’s very subtle. And it’s very implied and I think that that’s got a lot of power in it.

Tonya: I’m gonna skip ahead now to talk about the book some, but before we talk about that, and I, and I know you’re having trouble hearing, but there’s something I wanna play for Sofia.

I had the opportunity to visit the local Gigi’s Playhouse in my town, and they just moved to a new facility, so, They were giving me a tour of the facility and we talked a lot about those early diagnoses and things like that. But whenever I left they were about to have a speech class come in with teens and adults and they wanted to share something with Sofia.

So Sofia, they heard about the movie coming out. They knew that your book, You Are Loved had just come out. And I’m gonna play a message now. I’m gonna share the screen so you can see it. But, um, But this is what they sent to you.

Gigi’s Playhouse Raleigh: Congratulations from Gigi’s Playhouse Raleigh. Woo.

Jennifer: Aw, that’s so sweet.

Sofia: So sweet.

Tonya: So I told them I was gonna play that for you so that they could, um, could see your reaction to it.

And they’re gonna be watching this, so they’ll be able to see that your message to them as well. So, like I said, my surprises were little, but

Jennifer: Oh, I love your surprises. They’re perfect.

Sofia: I still love them.

Jennifer: Yep. We love little surprises and that was wonderful. We love Gigi’s Playhouse.

Sofia: Yes, we do.

Tonya: So I wanna talk about the book now.

Um, the You the You Are Loved book. Jennifer, we’re gonna, we talked a little bit earlier about how, we’ve already answered the question of how Sofia came to be part of your family, cuz you talked about the adoption, um, in your introduction. But how did the author Margaret O’Hare first find out about Sofia?

Jennifer: So Margaret is a, a PK kindergarten teacher in, um, our state county here in, in California.

And she saw Sofia, like most people do on social media, and saw that she was not too far from her geographically and reached out to us and said, gosh, I’d love to meet Sofia. She sounds lovely. Um, and we met her and she was wonderful and. I have always wanted to share her story in, um, in a book format, but like, just, I don’t have the time.

I, like, I, I did a lot of blogging when the, when the kids were little and that was my writing and, but I just didn’t know the process to writing a children’s book. And she did. She was a, she’s a children’s book author, so she and I collaborated and decided let’s do this together. And, um, she quickly, um, We basically, I, she’s like, do you want me to help you?

And I’m like, of course I do. I would love your help. And so she got, she got, she spent some time with Sofia, got to really know her. And then I would sit with her for many, you know, many lunches and breakfast where I would just talk about her experience. And between the two of us and Sofia, we came together and wrote, um, we self-published two books before we got a deal with Scholastic.

So we have Beautiful. You wanna tell them the two books?

Sofia: We have BeYOUtiful Love, Sofia,

Jennifer: and then we have

Sofia: We have Ride the Wave Love Sofia and Haole the Surf Dog.

Jennifer: Yeah. So we have, Ride the Wave Love Sofia and Haole, the Surf Dog, which is about surfing. With help. And then, yep. And then we had the BeYOUtiful Love Sofia, which is kind of an autobiographical. We did those ourselves, the two of us.

Um, and then we just happened to get a meeting with Scholastic that Meg had met the VP at coffee down in Southern California. It’s weird how things come together. I think it was all meant to be. This VP, Deborah Dorfman had seen Sofia as well, said I’d love to meet her. We went to New York City. We sat down in the Scholastic office with Clifford, the Big Red Dog all over the place.

And by the end of this one hour meeting, Sofia had charmed them and they’re like, we would love to do a book with you. So this book was an illustrated book and it was obviously the public, the publishing house is Scholastic and that that one’s called You Are Loved. Uh, I’m sorry. The first book is You Are Enough.

Um, a book about inclusion and it talks, you know, obviously about inclusion, which we’re so, um, so like, you know, it’s so much our mission is just inclusion, inclusion, inclusion, um, and acceptance and love of yourself, and then Scholastic, like that book was wonderful. Let’s do another one about Sofia’s adoption and talk about diverse families.

So You Are Loved as a book about families. And it talks about all the different kinds of families.

Sofia: Families fill me with love. So we can be together and work together so it can be loved again,

Jennifer: it doesn’t matter what your family looks like, as long as they love you

Sofia: because your family loves you, like you love your parents.

Jennifer: Mm-hmm.

Sofia: That way because your family is. Different is beautiful.

Jennifer: Different is beautiful, and your family can be different. And it’s still beautiful. So like Sofia introduces that she’s adopted and that’s how her family started. And then some families have are, you know, there’s a blended family. Some have grandparents that raise them, some um, you know, some have multi-generational families living under one roof.

You know, it just, and. Sometimes we look like our family and sometimes we don’t look like our family, but it just doesn’t matter. And so it’s a beautiful, inclusive family book.

Tonya: Um, Sofia, what age is the right age to read this book?

Jennifer: Four to eight.

Sofia: Four to eight.

Jennifer: That’s really meant for like.

Tonya: Okay.

Jennifer: I think, uh, I think anyone and everyone should read it, but it’s designed for ages four to eight.

Tonya: Those that are listening, Sofia has graciously signed two of those books. The You Are Enough and You Are Loved books for us, and if you’ll watch at the end of this segment, we’re gonna have a contest for you to be able to win those books. Sofia, thank you for signing those books for us. The books now you talked about you have You Are Enough and You Are Loved.

Are those two in a series? Is that how it’s running?

Jennifer: It’s kind of becoming a, um, a companion book to You Are Enough. So many of the characters that you meet and see in the first book are carried through in the second book, and you get to know their families a little bit better. Um, through pictures. The illustrations are quite lovely.

So what’s fun is you will have seen a lot of the characters in the first book they’ll reappear in the second book. Um, and that means, you know, we’ve got people that are wearing, you know, illustrations of people with hearing aids, illustrations with limb difference. Um, there’s, you know, depiction of people that are, um, blind.

Um, vi vitiligo, different sizes, shapes, colors, nationalities, religions. So it’s really lovely that, you know, we hope that everyone can kind of find themselves in the book.

Tonya: Are there any projects that are connected to the books? You, you have the deal with Scholastic as far as publishing the books. Is there anything else about the books or is there anything you can tell us?

Jennifer: Yeah, something exciting. What’s happening with the books? Um, they’re turning it

Sofia: into a cartoon.

Jennifer: Say it louder.

Sofia: Into a cartoon.

Jennifer: They’re turning it into the cartoon. What’s the cartoon called?

Tonya: That’s exciting. That’s exciting.

Jennifer: I know. Say it again,

Sofia: the Rocket Park.

Jennifer: It’s called Rocket Park.

Tonya: Do you know when that’s gonna start?

Jennifer: Yeah, so we don’t, I think that they are developing it right now and they’re shopping it around to different networks, so cross their fingers it gets picked up, but it would be the first cartoon that features a person with a disability as the lead. As the lead character. As the main character. So that would be Sofia and she, the premise is it’s based off the books, based off a little bit of her personality, but like just the spinoff of the books.

Tonya: Does that mean that Sofia will be doing the. The voice of the cartoon?

Jennifer: That would be the hope. Yes. We, they obviously cannot guarantee it because depending on what they need, if her voice needs to be younger or not, cause she’s 14, but you can tell ’em another project that you’re doing that you’re about to record.

Sofia: I’m doing a voice over on Nickelodeon.

Jennifer: Nickelodeon for a cartoon on Nickelodeon, so stay tuned.

Tonya: Wow.

Jennifer: And we’ll tell you the name of that as soon as we’re allowed. Right?

Sofia: Mm-hmm.

Jennifer: But you’re, you’re practicing cause she’s recording next week.

Tonya: Jennifer, what advice would you give a family that’s considering adopting a child with Down syndrome?

Jennifer: Oh gosh. I would say, um, if you have the hunch or even like a small inkling toward it, please, please, like, pursue that and, um, I highly recommend it. Um, obviously, you know, Just like with any child, it’s going, you know, your, your experience is gonna be unique. I can’t say that you’re going to adopt a child and it’s gonna be a child that’s like Sofia Sanchez, but I can say that you’ll be blessed with, you know, a child that is going to bring you the most incredible love.

And, um, I, yeah, I basically, if you have a hunch, please, please. Go forward with it. Say yes to that hunch and, and even if you can’t be the one that adopts, maybe get involved in helping organizations that help find families. So you can be an advocate for finding connecting families or maybe raising funds for families to be able to afford it.

But I will say it was not something I’d ever imagined doing and I had that hunch. And if I hadn’t to followed that hunch, we would not have Sofia in our life. So I always say like, Please listen to the little urges inside of you and, and, um, maybe it is something that will bless your family.

Tonya: And are there, is there a particular organization that you went through or is there a group that you would recommend people to get in touch with?

Jennifer: So there’s lots. Um, we ended up doing an international adoption just because that’s how it just organically happened for us. It wasn’t necessarily that I wasn’t, that I wanted to adopt out of the country. There just was a huge need. So there’s a very long wait list for adoptions of, of people with Down syndrome in the United States, which is a great thing to have a wait list of families wanting a child.

So, um, uh, at least a baby. I think the, the list for adopting a older child, there’s still a need in the United States, but um, overseas there are countries that have a lot of children in orphanages that are abandoned based solely on their disability. And so, uh, we used Reese’s Rainbow, which I think is still in operation.

It’s a nonprofit that helps connect families with children in need and helps with the fundraising. And then, um, but otherwise, yeah, there you can just get again, a Google search for adoption and Down syndrome, and you’ll find a lot of different organizations that might be more local to you.

Tonya: Now, we’ve talked about some projects for Sofia already.

Do either of you have any other projects coming up that you wanna tell us about before we finish up here?

Jennifer: Yes, we do.

Sofia: We do.

Jennifer: We’re leaving next week. Where are we going?

Sofia: We’re going to

Jennifer: what country?

Sofia: Iceland.

Jennifer: Iceland. We’re heading to Iceland Next week.

Sofia: Yes, we are.

Jennifer: And it’s an, it’s a project for a nonprofit called Just Like You.

And again, more info to come, but it’s gonna be a humanitarian project looking at the country of Iceland as the first country to tout that they have eradicated Down syndrome through prenatal diagnosis. So we are going to go to Iceland. And find a little girl with Down syndrome. Her name is Kolfinna. She’s around 10 years old.

And we’re gonna have the girls meet and we’re gonna film that and kind of create some content to in start a dialogue about what, why, why, why is this happening? And it’s more to come. But basically in a nutshell, Iceland is a rare, beautiful country and we feel that Down syndrome is a rare, beautiful human, human condition. So we want to kind of meld those things together and start the conversation and maybe. Possibly change the direction that this country’s decided to take.

Tonya: When will we be able to find out or how can we find out when that will be posted?

Jennifer: I, if you follow our accounts, we will be posting about it at length once we are able to, once we finish the project and the content is released, but hopefully we’re hoping that Discovery or National Geographic pick it up and do kind of a bigger story.

Um, and it’s, you know, we have a, uh, the nonprofit has a lot of plans for how they’ll use it and we’re not sure exactly which one will be released first, but I will definitely share and hopefully you’re gonna hear about it just because it’s gonna hit a bigger network. But yeah, Sofia was invited to go.

We’re very blessed. We’re going with another little girl with Down syndrome, that’s also a model in actress Mia Armstrong. And the two girls will go and meet this little girl Kolfinna in Iceland and. Kind of give her love and we’ll, we’re gonna do some photo shoots and some, um, video and some documentary style stuff, so we’ll see what happens.

Tonya: Oh, nice. I’m, I’m looking forward to that. And that actually leads us to my last question. How, how should our listeners get in touch with you? I know Instagram is one way. Um, sh what is your, what are the two of your Instagram accounts?

Sofia: It’s called the, the dot Sofia dot Sanchez.

Jennifer: So Sofia’s is @the.sofia.sanchez, like she said, and mine is @thesanchezsix all spelled out. But you have a website too?

Sofia: Yes.

Jennifer: What’s your website?

Sofia: www.sofia-sanchez.com.

Jennifer: Tell ’em how you spell your name because that’s often a mistake.

Sofia: S O F I A.

Jennifer: So an F, not a PH.

Sofia: Not a PH,

Jennifer: yes. It’s always like that’s an F, not a PH.

Tonya: I’ll put those links in the show notes as well so that they can find you and those that are listening. If you haven’t found their accounts yet, I highly recommend that you follow them on Instagram because they post lots of information. Lots of good information. So for those that want to know more about Down syndrome, but also to find out what they’re up to.

Cuz this family travels a lot and does a lot of of interesting things. So, um, I’d love to talk to you more, but I know you have a, um, a deadline that you have to hit. So thank you both for joining me today and for telling us more about all these different projects that you’ve been involved with and helping us to understand more about the Down syndrome community.

Jennifer: Thank you so much for having us.

Sofia: Thank you for having us.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IThank you for tuning into this inspiring interview with Jennifer and Sofia who have shared their incredible journey in modeling, acting, and writing children’s books. Sofia’s talent and determination have broken down barriers and opened doors for others with disabilities, proving that with hard work and determination, anyone can achieve their dreams.

Their children’s books promote inclusion, self-acceptance and love, and we encourage you to check them out in the show notes. Thank you Jennifer and Sofia for sharing your story with us today. And thank you Gigi’s Playhouse, Raleigh for your encouraging message to Sofia.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IDon’t miss out on our special Mother’s Day book bundle giveaway.

Win two signed books by Sofia Sanchez. And celebrate diversity and inclusion with You Are Enough and You Are Loved. Head to https://waterprairie.com/giveaway to enter now. Good luck.

Steve: This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at buy me a https://coffee.com/waterprairie.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IYou’ve been listening to The Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. If you found value in this episode, hit the like button and subscribe so you don’t miss future episodes of the podcast. I’m glad you were able to join us today, and I hope to see you back next week for another episode of The Water Prairie Chronicles.

​

The post Episode #58: From Hunger Games to Children’s Books: The Unstoppable Sofia Sanchez! appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, host Tonya Wollum welcomes Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

Jennifer and her husband have three sons, the youngest of whom also has Down syndrome. The family adopted Sofia when she was under two years old from an orphanage in Ukraine. Jennifer has since become a Down syndrome and adoption advocate. In this episode, Jennifer shares their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families.

Tune in to learn how Sofia is breaking down stereotypes and thriving as an eighth grader who attends school, plays sports, and is involved in a community theater production. Get ready to be inspired and uplifted by this heartwarming interview!

Connect with Jennifer and Sofia:

Purchase Sofia’s Books: (* As an Amazon Associate I may earn a commission on sales made by using these links.)

Resources Mentioned:

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

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

Get a BONUS entry by answering some questions about this podcast episode: https://forms.gle/SzNe8weUVdMt6yDp8

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/

Jennifer Varanini Sanchez is the mother of 4 busy teenage children, two of whom have Down syndrome. She’s a makeup lover and a Down syndrome and adoption advocate.

Sofia Sanchez is a 14-year-old actress, model, and Down syndrome advocate of Ukrainian-American descent. She made her acting debut in the television series, Switched at Birth, and has since appeared in a variety of productions, including the films For Paloma and The Ballad of Songbirds and Snakes. She has also been featured in print ads and commercials for prominent brands like Old Navy and Target. Sofia’s inspiring adoption story has been the subject of several Scholastic picture books, including You Are Enough and You Are Loved.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, we welcome Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

This is part 1 of an interview where Jennifer and Sofia share their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families. In the next episode, they will discuss how Sofia is breaking down stereotypes as an actress who will appear in the new Hunger Games movie coming out this Fall and has other exciting projects. Get ready to be inspired and uplifted by this heartwarming interview!

Tonya: I have two very special guests with me that I have been looking forward to meeting myself and introducing you to for quite a while. We have Jennifer Varanini Sanchez. She’s the wife of Hector Sanchez. She’s the mother of four teenagers, I believe.

Do you have anyone older than teen at this point?

Jennifer: Nope, Nope.

Tonya: So four teenagers.

Jennifer: Four teenagers.

Tonya: She’s a makeup lover and, um, she’s a Down syndrome and adoption advocate. And the last part of her description is why I wanted to talk to her so much.

With her today we have her daughter Sofia Sanchez. Sofia is a Ukrainian American actress, a model, voiceover artist, an influencer who is reminding the world that Down syndrome’s not scary. And Sofia has done an awful lot in just a short time of her life. And I’m very excited to, to introduce you to both of them.

Jennifer and Sofia, welcome to Water Prairie.

Jennifer: Thank you. Thank you. Thank you so much for having us.

Sofia: Yes, thank you.

Tonya: Is there anything you’d like to share about yourselves before we get into our interview?

Jennifer: You wanna say or do you want me to start? Oh, well, she covered me pretty well. You wanna tell who you are?

Sofia: Okay. I’m Sofia Sanchez. Daughter to her. I was born in Ukraine and when I came here to this American family, I was given to my mom and she adopted me from Ukraine. And I was like so honored to be in this family, in this new house and my new life is finally here.

Jennifer: Your new life is finally here. So what she’s talking about is, yes, we adopted Sofia when she was just under two years old from an orphanage in Ukraine, and she completed our family. So I have three, um, biological boys and we just didn’t feel like our family was complete until we added this sweet girl to it. And um, yeah, it’s been a wild, fun ride.

Tonya: Excellent. Excellent. Well, if you, um, have been watching the, the podcast or listening to it, then our listeners will know that we’ve been playing a game this season called Two Truths and a Lie, and I’ve asked Jennifer and Sofia to prepare some facts about themselves to share with you.

And, um, so I’m gonna start with Jennifer, if you will, share three facts about yourself with one of them not being true. Then we’re going to let our listeners go onto social media and see if they can guess which one is tr, which of the two are true and which one is the lie. So what would you like to share about yourself?

Jennifer: Um, let’s see. I was a cheerleader in high school. Um, I have been on a game show and I have, um, let’s see. I’ve flown on a helicopter with a famous person.

Tonya: Wow. Hmm. All right. I’m gonna have to think about those a little bit. So, Sofia, would you like to No, we, we, we aren’t gonna tell yet what the answer is on these.

So, Sofia, would you like to share three things about yourself? One of them not being true, but the other being true? The other two. So something

Jennifer: (To Sofia, “One has to be a lie. This is a little confusing, but you say two things that are true about you, and one that’s a lie, but pretend like it’s true.”)

Sofia: So I think the TV shows, and

Jennifer: That’s one fact you’ve been on a TV show. What’s another fact?

Sofia: Okay. I was doing a movie.

Jennifer: She’s been on a movie and, and then

Sofia: I’ve gone to 13 countries.

Tonya: She’s visited 13 countries. Okay. All right. So, so we have, you’ve been on a TV show. You’ve been on a movie, and you’ve been to 13 countries. All right, so if you’re listening, it’s your turn to go guess now, but come back and finish watching the interview as well.

And a week after we post this, we’ll post the answers to that. So Jennifer, I have some questions I’m gonna ask you about parenting children with Down syndrome. First of all, you have more than one child with Down syndrome, is that correct? Yes. I have two children with Down syndrome. So you are an expert on this topic for me in looking at the younger.

Jennifer: Yes. Yes. I feel like I’m very well versed in raising children with Down syndrome.

Tonya: So did either of your children need special medical care when they were younger?

Jennifer: Um, neither needed medical care in terms of like heart surgery or anything like that. We were really blessed with healthy, um, hearts and. Um, bodies, um, the only medical things we went through with both, um, were multiple ear tube surgeries and obviously tonsils and adenoids out for, to help with those chronic ear infections.

But that’s really all we’ve had in terms of medical issues. So we feel very blessed in that respect cause it is very common to have medical situations in addition to the extra chromosome.

Tonya: Are the ear tubes very common?

Jennifer: Very common. Yep. Very, very common. Um, heart conditions are common. Uh, gastrointestinal issues are kind of common.

Um, I, oh, we do have, you know, Joaquin uses glasses, so vision issues. Um, he had us for business. I’m just remembering he had a screw. Which is the crossing of the eyes. And so we had, um, surgery to correct that when he was young and it was very successful. So he use his glasses and, and was able to, to help straighten his eyes.

Tonya: So with early intervention services, I know with, with my children, one did need early intervention, the other did not. Um, with either of your children, did they require early intervention services before they were in preschool?

Jennifer: Yes. Both of my kids, we utilized early intervention the moment that we could.

Um, so obviously Sofia, we adopted Sofia, so we weren’t able to access that until she was close to two years old, just because of the fact that we had adopted her at a later age. So she missed out on two years of early intervention. Joaquin, my son, obviously the moment we got his diagnosis, we were calling our regional center and getting those services started.

Things that we did were music therapy, water therapy, um, Physical therapy, speech therapy, which was oral motor in the beginning, and then speech a little later on. We pretty much did anything and everything we could get our hands on. Um, and that was offered to us. We even did like social play therapy groups, um, with babies in, you know, like those Mommy and me type classes. So we loved it. It was wonderful. Early intervention was just a wonderful time in our lives.

Tonya: Your kids are a little bit younger than mine are. We had the. The OT and the um, the playgroups and things like that. But music therapy was never an offer for us, and I wish it had been. I think it’d be a great, a great addition to what, what we had seen with the kids.

Jennifer: Yeah. I feel like, uh, music therapy, if I had to pick just one, it would probably be that one because it really covers everything. Um, right. With the medium of music you. So I really loved it. We were blessed to get that when they were ready for preschool,

Tonya: then I’m assuming that they transitioned into a preschool or did you keep them home? What did you do during those years?

Jennifer: We decided to do a blended program. So, um, at three we transitioned to the special, um, special day class preschool program for two days a week, um, for a couple of hours a day, as well as the opposite days. We were able to dually enroll them in a typical preschool with support so they would get their therapies and the SCC preschool, you know, their speech, their ot, and.

Like some sup, real supported preschool programming. But then the other three days a week, they would be with their peers, their typical peers in a classic preschool program with an aide on hand to help if needed. So we loved that as well. It was the perfect. Blend of the two.

Tonya: Yeah, no, I ha I’ve not talked to anyone who, who did that.

Um, my daughter was in a preschool that was a blended preschool that was 50-50. Half of the students needed special help and the other were typically developing peers. And so my son attended as a typical peer in that program, and actually by default got the services that he needed. Because he wasn’t identified yet as needing those services.

But, um, but they both were in a, in that, so they were three to five days a week depending on, on their age at the time, cuz they were there from three to five as they moved into elementary school. Did they, um, did they, did they start out with an IEP right away? Um, or is it an IEP that they were on?

Jennifer: We had been in an IEP since age three.

So in California where we are. Um, the IEP started the moment we entered the school district at age three, and that IEP followed us through now. As we enter high school, we’re, we actually have an IEP tomorrow is transition to high school. So the moment we went into kindergarten, um, we had that IEP in place and we fought for an inclusive education.

Um, so we were able to successfully include them in general Ed for the majority of the day. Would just pull out for speech, OT, and some specialized academic instruction. But they were in the gen ed classroom with us. Both of them were, we were able to get a one-to-one para educator with them. So they had their own, each of them had their own. Um, you know, one-to-one aide support.

Tonya: Right, right. Nice. Nice. It’s, um, you know, our parents are all over the country that are listening, so each state will be different in what they can have, but I think it helps a lot to hear what other parents have had success in having or even to know what to ask for whenever you get to that, that step in your child’s education. So I appreciate you sharing that.

Jennifer: Absolutely. We are, yeah, we’re big on sharing all the, you know, the law and what, what the least restrictive environment is. And many schools will say, having an aid is more restrictive than not, and it’s actually not the case. The actual environment they’re in is the, um, is the environment not supports and services that are given to them.

So it’s good to remember. If your child needs that, it’s not necessarily more restrictive.

Tonya: I am still a novice when it comes to Down syndrome. I’m, I’ve had different connections through the years. I had the opportunity to, to have an interview last week and find out some basics. So that’ll be playing the week before this.

So those that are listening, if you haven’t listened to that one, go back and you can get a little more foundation listening to that interview too. But I’m, I’m sure that I’m guilty of some of the misconceptions that are out there, but what are some of the biggest ones that you’ve come across and how do you address those when you do hear a misconception about Down syndrome?

Jennifer: Oh, yes. So, um, one of the most common, I would say the general public is that people with Down syndrome are always happy. Um, and, uh, what I try to explain to people is, Children with Down syndrome, people with Down syndrome have a full range of emotion. So they will be happy when they’re happy and they will be sad when they’re sad.

And um, if anyone has ever met a person with Down syndrome, yes, they tend to have a really live in the moment attitude, which can be construed as being happy. But I think it’s just, uh, the fact that they are able, most are able to just be in the here and now. Um, but every child and adult that I’ve met with Down syndrome has every kind of emotion imaginable.

So, um, and then another misconception is that there’s, it’s like a one size fits all that, that, you know, if you have Down syndrome, it’s gonna affect everyone the same way. And having two children with Down syndrome, I can tell you firsthand that they are completely unique. In their needs, their, uh, abilities, their strengths, their struggles.

Um, just like my typical boys are so unique, you know, I call it my neurotypical boys. So, um, it is not a one size fits all. Um, I kind of, it’s, I would say it’s similar to like the autism spectrum disorder. Like, it, it, there’s a spectrum and maybe speech is harder for some children and not hard for others.

Maybe walking and mobility is hard for one child and it was not an issue with another. So, um, it’s, it, I think it’s important for people to remember. Down syndrome is, you know, it’s Tri 21, which is three copies of the 21st chromosome, but all 46 of the other chromosomes are mom and dad. So they’re still gonna be very much like their parents.

Um, and how that extra chromosome is reflected is gonna be different depending on the child.

Tonya: So it’s a very, it’s a very good point.

Jennifer: Some children with Down syndrome are able to read and write. Um, you know, I know some that drive a car and, and then there’s some that will never speak, do not have the ability to hold a pencil.

Um, so it’s just, it’s, you can’t assume, basically the key is you. What I try to tell people, don’t make any assumptions, of, of, that you know what a child can or cannot do based solely on their diagnosis. Let them show you what they are capable of.

Tonya: Right. So, and that, that kind of leads into my next question. Do you have any, um, advice that you would give to parents of young children who have gotten a diagnosis of Down syndrome?

Jennifer: Um, yes. So I tell any new parent that has just had a baby, um, first and foremost, congratulations. You’re about to go on the what most wonderful journey you never knew you needed or wanted. Um, so congratulations. Second of all. Um, enjoy your baby for your baby. Do not overthink or start like going down the rabbit hole of “what ifs.”

Just purely enjoy your baby. Um, having four children, I can tell you my children with Down syndrome were the most precious, enjoyable babies I’ve ever experienced. So enjoy that because the time is so short. Um, and then I would say, treat them and be with them like you would be with any other child. Talk to them. Love on them.

Give them experiences, give them opportunities. Um, do the therapies. I do recommend doing those. Um, it can only help. Um, and just, uh, believe, you know, believe that your child has value, no matter. What they are capable of. Like that whole ableism issue. Like do not assign value to whether or not they crawl at age two or walk at age three.

Like just celebrate every small moment for what it is and. And let them come on their own timeline.

Tonya: Nice. I like that. Can you share any resources or organizations that provided support for you or that you know of even that may have come into being after you needed them, that other families might wanna look for in their community?

Jennifer: Oh, absolutely. There’s, we are so blessed in the Down syndrome community because you’re gonna find things on a local level and a regional level and a world level. So there’s, I’ll start globally, there’s the Global Down Syndrome Foundation. There’s the National Down Syndrome Society, there’s the National Down Syndrome Congress.

There is Gigi’s Playhouse. There is um, uh, gosh, there’s the Down Syndrome Diagnosis Network, which is kind of like a mom support group that you get kind of connected with the same age kids. There is, then you go on a more local level and you might find in your own, you know, district or region, more local chapters of these groups.

Or for example, in our neck of the woods, some moms have created their own support groups. So a Google search is gonna just give you a plethora of choices. And, um, I would say to again, a new mom, reach out when you’re ready. Some moms need time. Um, but they’ll always be there. Um, and all of these organizations have new parent package or welcome packets.

Um, many will get you connected with whatever you could possibly need or want. Um, there’s even one called Dear Mom, that’s more like supporting the mom and our journey as moms. Not so much like clinical support or like Down syndrome related. It’s more just like taking care of yourself because that’s another thing.

Special needs moms as we know, you and I, um, we give, give, give and it’s really important to take care of yourself. So, you know, there’s organizations that support the mom as well.

Tonya: Excellent, excellent. For those that, um, that are watching or listening in the notes for this, we’ll put as many of those links as we can, and we’ll also add them to our resource page on the website so that if you’re looking, you can at least get started with some of those links.

So, is Sofia nearby or did she scoot off?

Jennifer: Yes, here she is.

Tonya: So Sofia, are you ready for some questions?

Jennifer: (To Sofia, “Come on over.”)

Tonya: So I wanted to ask you a few, just getting to know you a little bit. So what grade are you in in school right now?

Sofia: I’m an eighth grader.

Tonya: Okay. So you’re an eighth grader, so you’re about to move on to high school.

Sofia: Yes.

Tonya: Do you attend a local school or do you go online or homeschool?

Sofia: I go in in person because school is just my favorite thing to go with now.

Tonya: Excellent. And so since you go in person, you have some options. Are you involved in any of the clubs or sports at your school?

Sofia: Yes. Uh, well, I play sports, at my school, but now there’s basketball, running soccer and basketball.

Tonya: You do all of those.

Sofia: Yeah.

Tonya: Wow. I’m, I’m impressed. So you’re in school, you’re doing all these sports, we know that you’re an actress and all. What do you do in your free time?

Sofia: I go to a community theater for Adams Family.

Tonya: So Is that a musical?

Sofia: It is. I sing and dance.

Tonya: Oh, fun.

Sofia: But also I like to be in pictures.

Jennifer: You do modeling.

Sofia: I do modeling and. I love doing modeling because I can try different outfits and get selfies and pose.

Tonya: And so I’ve, I’ve seen some of your pictures on your Instagram. Do you take those yourself or does your mom take ’em for you?

Sofia: My mom does take me, but I help her.

Tonya: Yeah. Well, it, it’s, it, it’s of you, so it makes sense to do that.

So I wanna, I wanna talk to both of you a little bit about the new Hungry Games movie. Now that’s coming out in November, if I remember correctly.

Jennifer: Yes. You wanna tell when it’s coming out?

Sofia: It’s coming out November 17th.

Tonya: November 17th,

Jennifer: 2023.

Tonya: Wow. That’s coming up pretty soon. Are you getting excited?

Sofia: I’m so excited.

Jennifer: Yes. We don’t know what we, you know, we won’t have seen the movie until you do, so it’s very exciting.

Tonya: Right. And when we first connected, it was before you had just gotten the role, I think, or it was maybe before you got the role back in the summertime and or before you announced it publicly. You, you, you probably already knew at that point.

And then you were gone for what, three or four months I believe.

Voice of Tonya Wollum: Thanks for tuning in to this week’s episode of the podcast. We hope you enjoyed hearing from Jennifer and Sofia, who reminded us that Down syndrome is not scary and should be celebrated.

In next week’s episode, we will continue our conversation with Sofia, who is not only breaking down stereotypes but also breaking into Hollywood as an actress with exciting projects such as the new Hunger Games movie coming out this Fall, and Jennifer will be sharing what her role is in Sofia’s professional career. Stay tuned for the second part of this inspiring interview where we will learn more about Sofia’s acting journey and other projects she is working on. Don’t miss out!

The post Episode #57: Beyond the Diagnosis: The Realities and Myths of Down Syndrome appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this episode, we take a tour of the new location for Gigi’s Playhouse Raleigh, a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. We speak with volunteers and staff to learn more about the impact Gigi’s Playhouse has on the Down syndrome community. Additionally, we sit down with Michelle and Matthew Schwab, advocates for Down syndrome, to discuss a range of topics related to raising a child with Down syndrome, including medical care, education, and social interactions. Join us for an informative and inspiring conversation about the beauty of Down syndrome and the importance of building a supportive community.

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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/

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: Welcome to today’s episode of the Water Prairie Chronicles! We have an exciting show for you today as we take a tour of the new location for Gigi’s Playhouse Raleigh and sit down with Michelle and Matthew Schwab to discuss Down syndrome. They’ll share their personal experiences and insights, and help us understand the unique challenges and joys of raising a child with Down syndrome.

From medical care to education to social interactions, we’ll cover a wide range of topics in our conversation. Michelle and Matthew have a wealth of knowledge and experience to share, and we’re honored to have them on our show.

Gigi’s Playhouse is a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. The new facility for Gigi’s Playhouse Raleigh is truly impressive, and we’re excited to take you on a tour to show you what they have to offer.

So sit back, relax, and join us for this informative and inspiring episode as we explore Gigi’s Playhouse Raleigh and learn from the Schwabs about the beauty of Down syndrome.

This is our first interview on the topic of Down syndrome, and we were able to sit down with Michelle and Matthew after our tour to ask a few questions and to help us understand it better. Out of respect for those that I am speaking with, I like to find out how we should refer to different disabilities and special needs. So I started out by asking what terminology I should use when I refer to someone with Down syndrome.

Tonya: I want our listeners to know, as they’re meeting friends in the community, what is the most respectful way to refer to someone with Down syndrome? Um, and I’ve seen it written different ways. It’s “Down” and not “Downs”. Is that correct?

Michelle: That’s correct.

Tonya: So, there’s no “s” on the “Down” that. And is the “D” is capitalized and “syndrome” is lowercase?

Matthew: Yes.

Michelle: Correct.

Tonya: And why is that?

Michelle: The only, it is in typical, if you are doing a, um, if it’s on a sign or something like that, like Down Syndrome Achievement Center.

Tonya: Right.

Michelle: They would all be the D title capitalized. But if you’re talking about it, cuz Down is the man’s name who discovered it.

Matthew: John Langdon Down. In like the 1800s.

Tonya: Oh, wow. I was wondering how, how, how long it had been an official diagnosis. So it’s been a long time.

Michelle: That’s right.

We continued the conversation by talking about some of the common characteristics of Down syndrome.

Matthew: Yes. Down Syndrome is a, the, um,

Michelle: the most common,

Matthew: the most common genetic disability,

Michelle: let’s say condition. The most common genetic condition.

Matthew: The most common genetic condition is one of the ones in the Intellectual Developmental Disabilities Spectrum of disabilities because it only mainly affects the mentality.

Michelle: There is always some kind of cognitive impairment. Right? What are some of the other, um, markers?

Matthew: So, so we have shorter statures, wider hands. And small ears.

Michelle: Mm-hmm.

Matthew: Almond shaped eyes.

Michelle: Mm-hmm.

Matthew: Heart defects for. Some or

Michelle: about 50%.

Matthew: About 50% of those with Down syndrome have have those. And there are three types of Down syndrome.

There’s mosaicism and translocation, which are the least common of the types, and there’s the most common one, which, which I have is trisomy 21. And that’s why March 21st is significant and October because of 3, 3/21. And, and Down syndrome-related companies, or not have any sessions, but celebrate that World Down Syndrome day in, in, in October

Michelle: So the, then the three, so probably 95% of people who are Down syndrome have Trisomy 21.

Tonya: Okay.

Michelle: It’s just a fluke. It just happens.

Tonya: And that’s the only one that I’ve heard of, so. So the first thing you mentioned,

Michelle: almost everybody,

Matthew: Mosaicism

Michelle: Mosaicism.

Tonya: Mosaicism.

Matthew: But for short it’s mosaic.

Tonya: Okay. And then what was the second one?

Matthew: Translocation. And those two are the least common of the types.

Michelle: They’re a couple of percentage. And, um, mo, so mosaic Down syndrome is when not all of your, um, genes have the extra chromosome. Could be any, could be 5% of them, 10% so can’t have any time during. So depending on when your, your cells are splitting, they wouldn’t all have it.

Tonya: Okay.

Michelle: It’s interesting because there are, I know I, I mean, I don’t know this know this, but I do know this, know this, that there are people walking around who have it, who don’t know, who’ve never been diagnosed. They have to be.

Tonya: Well, because you would have features would not be the same.

Michelle: That’s correct. Not what, that’s correct.

And we know with you and, um, their, you know, abilities typically, they have some different abilities. They’re, yeah. Maybe not as, You wouldn’t know, right. Sometimes true. Um, and then translocation, if I remember correctly, it is, it comes from a parent, it comes from, it’s inherited somehow.

Tonya: So there is a genetic factor.

Michelle: Yep. also. Very, very rare.

Tonya: Okay. And then, so tri,

Matthew: Trisomy 21,

Tonya: Trisomy 21, right?

Matthew: Yes.

Tonya: Okay. We’ll make sure. And Link this, so make sure that I print it right and

Michelle: it really is almost everybody.

Tonya: Okay. And that’s, that’s where it’s the 21st chromosome.

Michelle: Mm-hmm.

Tonya: Is that right?

Michelle: Mm-hmm. Which is what Extra copy,

Matthew: the third copy of, of chromosome 21. Because, and, and, and typ neurotypical people like my mom, they only have. Two copies of, of code, one

Michelle: of all of them,

Matthew: of, of all them. And then, and then there’s, um, and then there’s with Trisomy 21 Down syndrome, where, where the, the two copies of Trisomy 21 makes. Makes another copy.

Tonya: Okay.

Matthew: It’s a third. Oh,

Michelle: that’s the Lucky Few we have.

Tonya: And what, do you know what the estimated percentage of the population is?

Michelle: You know, I do know that somewhere

Matthew: I think Down syndrome is probably, if not one of the largest, min largest ones in the, in the disability realm.

Michelle: I know you can find that statistic. Cause I have seen it somewhere, not pretty recently and I can’t remember what it was. I, um, I don’t, the number’s probably not huge. Um, there’s 700. 1 out of 700 kids are born a year with Down Syndrome In the US And I would this to, there, there would be a whole lot more if people were not prenatally diagnosed.

Tonya: Right. Right.

Michelle: That’s

I asked Michelle what she could tell us about early testing during pregnancy and if a diagnosis happens at birth or sometime later when prenatal testing doesn’t indicate a child might have Down syndrome.

Tonya: Well, and that, and that was what I wanted to ask too. So diagnosis. I know from when I was pregnant, we were given the options for different testing and we opted not to, cuz to us that wasn’t an issue. Um, the risk to us was greater than,

Michelle: no,

Tonya: we were going to meet our child when we met our child.

Matthew: Yeah.

Tonya: But, um, but for those who don’t do the testing like us, um, are, is it obvious at birth or do doctors know what they’re looking for right away?

Michelle: In my experience I have, I’ve actually known a few, probably fewer than five people in the last 25 years who went home with their baby and had no idea until weeks, or sometimes, months later, but it’s pretty rare.

I mean, it’s pretty obvious. We didn’t know. He was my first, we didn’t know before he was born. We thought he was, let me tell this story cuz I was the one who was aware and cognizant you were, you know, a little floppy thing. Right. Um, but all it’s funny because all of the markers, the low tone, he, he was like a Raggedy Ann doll.

Tonya: Okay.

Michelle: Um, he, and we commented on his teeny tiny fingers with his teeny tiny ears and look at this little gap between his toes. And he was floppy like a Raggedy Ann doll, all markers. And I, here I am going, oh, look how cute this is.

Tonya: Right

Michelle: and then four hours later the doctor comes in and goes, you know, we think he has Down syndrome. So, and I, I had the AFP, you know, that original, the blood test or whatever it was,

Tonya: right

Michelle: and it was normal. But that happens all the time.

Tonya: And so ultrasound part

Michelle: didn’t show anything.

Tonya: No problem.

Michelle: If you look back at it now, knowing you could go, oh yeah, you know, maybe they. Called this one, but

Tonya: I, I think a lot of us as moms, we see things later. It’s like, well, we, the signs were there, but we didn’t know what we were looking at.

Michelle: Correct. And so we didn’t do any further testing. We, I have two other boys, and we were like, you know, it is what it is.

Tonya: Right.

Michelle: And clearly the testing isn’t necessarily right. So we,

I’ve heard parents of children with Down syndrome refer to their children as the “Lucky Few” and wondered why the term is used. I found out as Matthew shared some statistics with me. Contrary to what I had been told when I was expecting my own children, Down syndrome doesn’t seem to be much more of a risk for older mothers than it is for younger mothers.

Matthew: I believe there’s a statistic that says like, like 51% is more probable of 51% of, of individuals with with Down syndrome are born to two parents under the age of 35. So it’s more probable. From that, that, that way. But aside from that,

Michelle: well, yes, it, it, you know, you always heard it’s old, old moms,

Tonya: right.

Michelle: Have the kids. But it’s really not true when you factor in that more women below that are younger women are having the babies. So it’s, that’s not, one of the factors anymore.

One of the challenges I’ve had in coming up with a slogan for the podcast has been whether to use the term disability or special needs, and each time I ask for input I get an equal number of responses in favor of both of them. The same question comes up when we ask about “person first” language or “disability first” language. Michelle commented on the topic, and I was glad she had done so.

Michelle: The one thing that, um, when you were talking about the, using the proper terminology, the one thing that you’re already naturally doing is using people first language, a person with Down syndrome instead of a Downs man.

Or, um, so that’s, that’s the one thing having the, the child right. We don’t get, I mean, personally, our family uses it as a teachable moment. Right. I don’t, it’s a, it’s a word what, you know, if you goof, if you, it’s, I feel like most people are not intentionally malicious or I think you’re right on that.

They just don’t know. You don’t know what you don’t know.

Tonya: But I figured if we can, if we can address it openly with this,

Michelle: For sure.

Tonya: Hopefully a parent who is in uh, an emotional moment isn’t having to now explain it That’s right. To someone else who, who cares about them, but doesn’t know that what the words are saying is hurting.

Yep. And um, so yes, um, I’ve also found that the word, the terms, I saw that you were correcting him when he was using disability. So, um, so what is your preference on that?

Michelle: Well, it is it, for us personally, I’m okay with the word disability. But somebody saw it in one of his PowerPoints and said, you know, we could use the word condition instead of disability.

I’m like, if that makes you feel better. Right. We can use condition I,

Tonya: I go back and forth between special needs and disabilities. Yep. And depending on who I talk to. Yeah. Um, my kids both are fine with both terms. So are we. It’s, you know, it just, here’s what it is. It, it, it is, and, and you get to the point where it is what it is.

We are who we are. Um, we can get stuck here or we can move on to, to whatever’s next.

Michelle: Just be nice to my kid.

Tonya: Exactly.

Michelle: And have high expectations.

Matthew: Right.

Tonya: And, and awareness is a big piece of it. And I feel like that’s what a lot of these conversations will do is, I mean, like, so for me personally, I’m learning as we’re talking here.

Um, it’s not that I don’t wanna know, I just haven’t had the opportunity to have this kind of conversation before. So I appreciate that.

Michelle: And, and most people are, myself included, you’re, you’re nervous to ask the question, right? So you don’t want to offend somebody by asking the question. So then you just

don’t learn and you don’t know

Tonya: when you, you had made the comment, well actually you, you had made the comment that, that, that with, with Down syndrome, you have it on, on, on, on your face.

Mm-hmm. So it, it’s a identifiable. Um, but you know, do you find that people want to avoid you and not not engage? Do they come and just ask questions or do they, does it even an issue? Do they just. You’re meeting someone, you’re meeting someone, they, they don’t bring it up at all.

Matthew: I mean, there have been times in, when I was younger when they do talk to, to me like, like I was a kid.

But, but, but now, I mean, they, they don’t do that, but they kind almost do that in, in, in a way where, Where I, I’m not completely treat, treated that, that way.

Michelle: For example, sometimes if we go somewhere, if we are at the doctor’s office or something, they will automatically look to me and you know, and so I just turn to him, he’s perfectly capable of answering his own questions and doing all of that stuff.

So I, is that what you’re talking about, that kind of thing?

Matthew: Yes. It’s more like the social. Interactions and, and, and, and little bit of, of the, the workplace interactions because there’s prejudice of employers either because they, they know of, of what Down Syndrome is, but they’re too nervous to know what it is

The next questions I had were about medical care. I wondered what some of the medical care needs might be for a child with Down syndrome. Matthew started by explaining that some might have a heart defect.

Matthew: defects.

Tonya: Is it a defect?.

Michelle: Yeah, and it’s a couple of different ones.

We didn’t, he didn’t have it, so I’m not very well versed in that. But, um, they almost about 50% have some heart defect. Okay. Um, I would, the number’s gotta be huge that have surgery and are fine. Right. Um, I know a couple of you are a pacemaker, but honestly they do the surgery and they’re fine.

Tonya: Is it, do you know if it’s usually a one-and-done. Or is it like a repeated, as a,

Michelle: I believe it’s a one and done.

Matthew: in another field of medical assistance is, is orthopedics and, and, and all because, because naturally we don’t. Um, defined muscles in, in our body and

Michelle: not quite, not quite,

Matthew: I mean, not, not, I mean, but we do have a lot of muscle loose ligaments, so, so that’s why we go to an orthopedist and an orthotist where our, some of us with Down syndrome have. coordination and, and these are AFOs like, orthotics  And, and pediatricians definitely. Right. General practitioners.

Tonya: Right. So your specialists would be more the orthopedic doctor that you’re working with? Yes. Pediatrician was

Michelle: often vision problems or vision. Um, Yes, he had, he should wear hearing aids because he’s had fluid in his ears because the ear canals are really tiny.

So that’s sometimes an issue. Um, I don’t know. Feeding because of the low tone is sometimes a,

Tonya: I wondered about that.

Michelle: A, a challenge. Breastfeeding, sometimes a challenge. They can do it, but sometimes a challenge. Um,

Tonya: so the, so the low, the low muscle tone is, is a condition that’s there from the beginning, but with therapy and with exercise. Does the muscle tone

Michelle: No it’s always, it’s always low, it’s always, and it’s a resting muscle tone. Like he can build, he has muscles, he can do this, and he’s got guns. Right. So when his muscles are active, they’re fine. It’s the resting muscles just kind of ???, they just,

Tonya: so your joint stability would be affected.

Michelle: It, it is. And but again, it’s a range just like with everybody else, just like with the cognitive ability there is, I mean, it’s just like in the typical population, cognitive wise, right? All the way from. Yep. Whatever. Two. All the way up,

Tonya: we have an an aver average for a reason.

Michelle: That’s right. That’s right. And it’s the same exact thing. Just shifted. Okay. In the Down syndrome.

Since Matthew was open to sharing information with me, I asked him about his experience growing up. We were talking about cognitive growth, and I asked if he had needed more time to reach some of the milestones growing up. He and Michelle chimed in to help me understand what Matthew’s path has been.

Tonya: And with that shift, talking about the cognitive, um, abilities here. So you’re carrying on a full conversation here? No, no. Deficit size.

Matthew: No deficit at all..

Tonya: Are there delays though, as far as, did, did it take you longer to reach some of those milestones as every child?

Michelle: Every single one.

Tonya: did it take you longer to get to the point where you were reading independently.

Michelle: Do you know the answer?

Matthew: The only only part that I do know is that, that my mom, when my mom first told me I had Down Syndrome and I was in first grade and, and she had me repeat first grade only. Only once. So I wasn’t graduate in 16 cla in 2016. But me being held back, I graduated a year later in 2017.

Tonya: So spending some, some extra time in those foundational Yes. To get Okay.

Michelle: There was, I, I would say second kid, and I knew what the progression should be, right. But he was, I would say that that reading was his strength. Okay. Um, so he excelled at it. Um, and so it was definitely, it was not as big a deficit for him as some other things were.

Gross motor was a much bigger deficit for him. Okay. Um, probably because of, I mean, he was very, He was very late, even in the Down syndrome community. He was very late to walk.

Tonya: Cause I knew crawling and walking is delayed and for, for the majority of the kids.

Michelle: Yep. Almost everything is delayed.

Tonya: So it’s not that you’re not going to get there, it’s just gonna take longer to get there.

Michelle: Right. For most, for most things. Correct. And hold on. What, what?

Matthew: I was gonna say even delay in, in speech. Like I, right. I did sign, sign language. Okay. Until I was two years old and then two years old, I started talking

Michelle: five.

Matthew: Okay. Oh, five years old.

Michelle: I knew what He knew you. I, so it helped me. True. Um, and it was, and it was cool. We didn’t do any, um, we didn’t do asl. We didn’t sign exact English, so it was just a pro. They were, they had sign ideas, sign did that kind of thing. We. His sign for my mother was this cuz she had curly hair.

Okay, we took it and ran. Whatever. We’ll take it. He uses it consistent. Right. He was talking to us.

Tonya: The, the idea was communication.

Michelle: That’s right. And so he, and as he learned words, he, this, the sign he left, he gave up the signs.

Before we finished, I wanted to make sure I asked about new parents who want to get connected with Gigi’s Playhouse.

Matthew: go to gigisplayhouse.org, which is the main website. And, and, and then there’s a part on the national website. They can look at.

Michelle: Locations,

Matthew: locations across the country, how to start one, and existing ones. So, and, and they go to an existing one, like for example, Charlotte,

Michelle: just for their look at the list of existing playhouses?

Matthew: Yes. And, and then

Tonya: So there is a directory there?

Michelle: There is.

Tonya: Okay, good.

Matthew: And then they can go on on there and see what that Playhouse offers.

Tonya: Excellent. And do you have any advice for. Parents

Michelle: for new parents?

Tonya: For new parents,

Michelle: um, your baby is a baby first, and that’s really, I, that’s the best piece of advice is just treat ’em like, treat ’em like a baby, love them and manage, find the resources as you as you need them.

Tonya: Excellent, excellent. Top of Form

As we wrap up this podcast episode, Steve and I want to express our gratitude for the opportunity to learn about the incredible work being done by Gigi’s Playhouse for the Down syndrome community. We were truly impressed by their dedication and support for individuals and families, and we encourage everyone to check out gigisplayhouse.org to see how you can get involved.

Even if there isn’t a Gigi’s Playhouse location in your area, they offer online options for connection and support. By supporting Gigi’s Playhouse, you can make a meaningful impact in the lives of individuals with Down syndrome.

We also want to thank Matthew and Michelle Schwab for sharing their experiences and insights with us. We learned so much and are grateful for their willingness to be a part of this episode. For those of you who want to learn more about Matthew, we’ll include his contact information in the show notes.

And if you’re listening to this on the audio platform, we encourage you to check out our video on YouTube, where you can see a tour of Gigi’s Playhouse Raleigh. Thank you for joining us today, and we’ll see you on the next episode!

The post Episode #56: Building a Supportive Community for Individuals with Down Syndrome appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In today’s episode, your host, Tonya Wollum, interviews Amit Chawla, a software product manager and founder of a financial planning company. Chawla has two sons, one of whom is autistic, which led him to become a certified financial planner and chartered special needs consultant.

Throughout the interview, Chawla shares his experiences of raising his son on the severe side of the autism spectrum and the struggles he faced in getting consistent treatment for him. He talks about how this experience led him to send his son to a residential school and how it gave him and his wife time to think about their future. Chawla’s wife was an attorney, but she went back to school to become an estate planning attorney, specializing in special needs and elder law.

During the interview, Chawla also discusses the unique perspective on life that the special needs community has and their ability to find gratitude in things that others may overlook. With his part-time financial planning practice, Chawla plans to continue helping families with special needs for as long as he can.

This episode is an inspiring and eye-opening conversation that sheds light on the challenges and triumphs of raising a child with special needs.

Connect with Amit:

Connect with Us: https://linktr.ee/waterprairie

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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/

Amit Chawla is a Software Product Manager and founder of My Special Financial Planning, a financial planning company that focuses on special needs families. He and his wife, an Estate Planning Attorney, have two boys and reside in Lexington, Massachusetts. Their oldest son is 13 years old and has Autism, which led Amit to become a certified financial planner and chartered special needs consultant. Amit’s goal is to help families with special needs members plan for a better future. He volunteers for a couple of non-profit organizations to provide pro bono financial planning services, and he and his wife moderate a private Facebook group called Planning for Special Needs. Amit shares openly about his experience with raising a son on the severe side of the Autism spectrum and how it led him to become a passionate advocate for special needs financial planning.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: In this episode of the podcast I’m talking with Amit Chawla, the father of an autistic son. He discusses the challenges of raising a child on the severe side of the autism spectrum, and the special needs community’s unique perspective on life.

Welcome back to the Water Prairie Chronicles. We appreciate you being with us today, and I have a new guest that I’d like for you to meet. His name is Amit Chawla. He’s a software product manager. He’s the founder and owner of a financial planning company. He has two sons, the oldest is autistic, and because of that, he understands some of the questions that parents might have about planning for their children’s future.

So, Amit, welcome to Water Prairie.

Thank you Tonya.

So would you like to tell us a little bit more about yourself? That was a really brief overview of who you are.

Sure, sure. Tonya. So, I’ll go a little bit back. Originally I’m from India, born and brought up in Delhi, and I was there until I was 20. Then I moved to California.

I was in California for about 10 years. Uh, then my job brought me to Massachusetts. Uh, it was 2011, uh, when I came to Massachusetts. Soon after we came here, my son was diagnosed. My oldest son was about three at that time, and he got diagnosed with autism. Uh, that changed the trajectory for me a little bit.

Uh, I had some other dreams, but I had to readjust those dreams. I became a lot more risk-averse. I had to make sure that I am able to support my family here. Uh, while my son was growing up, it was a challenge. Uh, my son, what we can call, he’s on a higher or a severe side of autism spectrum. The initial five years were extremely tough for us.

Uh, it was tough for us to see him regress. At one point he used to talk in sentences, then he lost his speech, then he started developing behaviors. Then he became aggressive towards others. Then he became self-injurious. While all this was happening, we were struggling with getting him the treatments or getting him, uh, seen by a number of doctors, neurologists, cardiologists, uh, psychiatrists, and a number of therapies, speech therapy, occupational therapy.

Along with that, trying to struggle with the public school. Trying to struggle with insurance companies, how to make sure that he’s able to get regular services, consistent services, how to make sure that he’s able to get ABA services that he needed at home. All of this continued for five years, uh, and we realized that we are losing this battle.

That’s when we decided to send him to our residential school. That was a long, long story. Uh, once he was sent or once he was away from our house, that’s when both my wife and I found time to think deeper as to what we wanted to do with our lives. Uh, I can talk more about my wife. It was a long and difficult journey for her as well.

Uh, She used to work when we were in California, but because of our son’s diagnosis, she had to stay at home. Uh, she was on, uh, a receiving side for sure. I used to go to work, so I was not too deep into as to what my son was struggling with and what my wife was struggling with. Uh, by keeping him home.

She, she survived through a bad, uh, bad phase of anxiety, uh, depression. Uh, but she has come out much stronger. I would say. We have, both of us have come a long way, a very long way. My wife went back to school after my son went to the residential school, uh,

and. I, I’ll probably cover more of it, uh, during our other, uh, discussions, but she’s an attorney. Uh, she’s been working as an estate planning attorney. She’s also doing part-time LLM to further specialize in special needs now and Elder Law so she’s been focusing on the legal side.

Over the last five years, I’ve been focusing on the financial planning side of, uh, special needs. I am a certified financial planner now. I’m a chartered special needs consultant, now launched my company middle of last year. I’m doing this as a side hustle. Uh, I do want to continue to support my family. As I said, I’m a risk-averse person.

I will probably keep my financial planning practice as part-time for probably another 15 years by the time. , it’s time to retire. Uh, I’m thinking probably I’ll retire when I’m 60. That’s when my younger one, uh, will be done with his college. And we’ll talk more about my younger one. . .

So you, you’ve, you’ve had an, an interesting road, but I like the, the mental perspective that you and your wife have taken on this.

Um, we do change a lot when we meet our kids. Don’t, you know, it goes, it goes beyond what we ever thought it was going to be.

It completely changed our perspective. And over time I have realized that people in the special needs community are different. They understand differences more. They understand their own natural cap capabilities more.

They are able to. Find gratitude, in things that usually you won’t if you haven’t gone through that experience. Yeah, so the reason I bring that point is, uh, when we decided to go for our second child, uh, my wife was very afraid, uh, probably, you know, that chances of having a second child, uh, with autism are significantly higher than the first one.

But since she was struggling so much and we knew that we are going to have a hard life, , I had to convince my wife that we have to go for the second one. Uh, I only saw a silver lining in it. I knew that if the second one also had similar problems. At least we’ve been through the experience, we’ll be able to manage it better and give that second child a better life based on our experience. But if things turn out well, I mean, there is, there is nothing better than that. And things did turn out well. Our second kid who’s seven years old now, he’s, he’s neurotypical very, very kind guy. Uh, I would say, uh, recently he won, uh, a recognition at school for his kindness.

And that’s what we told. That’s the best kind of recognition that anyone can get. Uh, so, uh, he’s seven years old. Uh, he was, uh, two when our older one, uh, went to the residential school. Uh, I believe we are at a fairly good mental state, fairly good emotional state, and in general, good career stage, uh, where we are ready for us to give back to the community.

Both me and my wife have learned a lot during this journey, how to recover from the grief, how to advocate for our son, uh, how to make sure that even though, even though we ourselves were not able to give him love and care at home, we were able to find the best possible place that can take care of him.

Uh, he’s been there for five years. Uh, I’ll say it again. He’s at the best possible place, uh, for his needs. Uh, over this time we, I would say it’s a blessing in disguise. Uh, because of him we found our purpose. We have a purpose in life. And over time, I’ve realized very few people, uh, find that, uh, during their lifetime, both me and my wife have discussed this several times, that we have this goal and purpose in life.

That if we are able to help people beyond ourselves come 30 years down the line when we are 75, or 80, I think we will be a much fulfilled souls thinking back in history that, we were able to make a difference in others’ lives. And all of this, all of this was because of our son. So even though, uh, He’s not able to understand maybe at some day, some point of time, uh, we’ll see how things go.

Uh, one thing, he’s, he’s a 13 years old, uh, boy now, even though he’s 13 mentally, he’s a two-year-old boy. He’s non-verbal, so we don’t know how much he understands, but we’ll see. We’ll see. We do know that he understands few things and he surprises us time to time. Uh, but I’m sure, uh, there will be times in future where he’ll be able to convey in some shape or form to us that we did, we did good by him.

Yeah. Yeah. Well, it’s, you know, and I appreciate you being willing to talk openly about your son and his situation, because a lot of times whenever I am talking to other parents, their children are more of a level one, level two autistic. And so it’s a very different path when, I mean, if you were diagnosed today, it would be level three.

I’m learning as I go too, as I talk to more people. The newer diagnosis, it’s, uh, level one is, um, a little bit of support. Um, it goes by the amount of support that’s needed.

Um, level three would, would need the most support. And in your son’s case, he, definitely is needing support to be able to, to function and to, to have a fulfilling life. Um, and even, to know that having him in a more consistent residential facility where they can meet his needs, that is that level of support that he needs.

But, um, it’ll be interesting to see in time. Because I, I am learning that, um, our, our non-verbal, our non-speaking, there are other ways of communicating. And I’m wondering if maybe they’ll find a way to help him learn to communicate through one of the non-verbal ways.

Yeah. Yeah. He does have, uh, his device, uh, where he’s able to choose that, okay, he wants to go out and want to eat.

If he wants to eat, eat what? So he’s been progressing, he’s been progressing on that a bit.

Yeah. Good, good. So, he has been learning how, how to use that.

Well, before we get deeper into this, um, this season we’ve been asking each of our guests to share three facts. And I use that “facts” in quotes here, about themselves, two of them being true, one being a lie. And we’re, it’s a game if they’ve ever played. It’s called 2 2, 2 Truths than a Lie. So I’ve asked Amit to prepare that for us as well.

So would you like to share your three facts for us, for our guests to try to guess which one they think is the lie, and which are the truths?

All right. That’s interesting. So let me start with the first one. Yeah.

For the first 24 years, I lived with a hole in my heart. It was about a two-inch big hole and I never knew it. I went for a physical, uh, when I was about 24, and my doctor heard something abnormal. She asked me to go get more tests done and the hole was identified and then the hole was plugged. And all of this was happening when I was trying to marry my wife.

So, it was a big wrinkle. Big wrinkle. But I’m all healed up with no more hole in my heart. That’s fact number one.

Fact number two, my wife’s dad and my dad were childhood friends. They used to go to school together. They even lived together when they were working. They used to cook together before they got married. Many years later, my family, my parents that is, and her parents decided that probably we should get married. In 2004 we got married, but we only got to see each other face-to-face one day before the marriage.

Fact number three. I am very comfortable jumping from cliffs. From cliffs. I’ll say that again. I’m very comfortable jumping into the river from cliffs. My first one was very smooth. My second one, I had my legs. And you can imagine what happened, I jumped into the river from about 15 feet high cliff, and that was an experience to live with

So if you are listening, check, um, you can put your guests in the comments for the video. If you’re on the YouTube video, if you’re listening on the audio, then check out our Instagram or our Twitter accounts and you can leave your guesses there.

And a week after we post this, we’ll put in the answer so you can check whether you’re right or not. If you listen to this later, you can always still guess and just check, check and see if you’re right or not. So thank you for sharing those with us. Yours, yours are very, very interesting. Um, facts about yourself,

So you’ve told us a little bit about, about your oldest child and raising a child on the spectrum. Um, can you tell us a little bit more about that?

Yeah, sure. Uh, while my oldest one was growing up, my wife started seeing concerns when he was one year old, one year old. So, he had delayed speech. Uh, she was reading stuff online, she was talking to people, and time to time she brought that to my notice.

But I was, I was ignorant. I said that kids are, are learning at different paces. He’s going to catch up. And at about, uh, 18-19 months, he started speaking and I. again, told my wife, you, you were concerned for no reason. He’s speaking in sentences now.

When he, wait a minute. Wait a minute. Eight or nine months?

Uh, 18 or 19 months.

18 or 19. Okay. Okay. , one second. Eight or nine months. This child is a savant. 18. 18 or 19? 18 or 19 months. Okay. Got it.

He started speaking, uh, then he was talking in sentences. Then slowly, uh, he started regressing. He started losing some of his speech and his, uh, usual autistic behavior started showing up, hand flapping, and then.

Uh, chewing up things and all. Uh, it took me some time to accept. It took me, I would say, at least five, or six months to accept that. This is something real, and this is something that we’ll have to deal with, uh, for our entire life. Uh, we did try out a number of different medications, and a number of different treatments, but nothing.

I mean, there’s no treatment out there, right? Uh, I do want to tell people while listening that go through this journey, uh, go through this journey. Yes, you will have to accept. Do try out a number of things. Uh, surprises may happen. Uh, there, there are people who have recovered, but keep your feet on the ground.

Try to start accepting that this is something that you may have to live for a longer time. Do try to listen to the mom if you are a dad. Moms have a very. I would say sensitive radar to see into these kinds of things. Uh, , they know when things are going right or when things are off. I wish I knew about this before.

I would’ve been able to support my wife better. My wife struggled quite a bit, as I mentioned. Uh, there were times, even, even when my son was growing up, I was doing my part-time MBA and my CFA, so she was all alone, uh, bringing him up at home. She used to have those anxiety attacks which now I realize that I should have been more sensitive about.

Uh, family is at then the most important thing in your life. Other things can wait. Yes, you have to do other things to support your family, but only family will be with you if everything else goes away. So while bringing up Ishan, I did mention about some of the struggles. Do try to seek help. Do try to reach out.

You cannot, you cannot survive this by yourself. Try to create a village around yourself. Try to be sensitive about others’ feelings and when they’re trying to reach out to you, try to see what they have to offer. That. There have been instances where we could have accepted more help, but. , we didn’t know how to even accept that help.

Do, uh, reach out to a number of nonprofit organizations. Learn how to deal with this. Uh, I do know that if you are raising a kid with special needs, there are instances when you are overwhelmed. There are instances when you won’t have time to think about anything else. You live day by day. You try to cope with what the next day is going to look like.

Try, try to take a step back, try to seek help. Try to think longer term. There is help available out there. There are a bunch of nonprofits that can help. There are a bunch of professionals, uh, that can help you in different aspects of your life. Be it legal, be it financial, be it emotional, do reach out.

No. Well, I was gonna say you mentioned some of the resources. What are some of the organizations or resources that you’ve worked with that you might recommend to families to look for?

So, uh, there are a bunch of resources.

Uh, first of all, if you are employed, your employer should be able to give you a list. Uh, there are a bunch of nonprofit, uh, organizations. ARC is one. There are, there are special needs, specific non-profit organizations that can help you, uh, with the initial guidance. Uh, we’ve come a long way. There are online groups and Facebook groups that you can join.

There are WhatsApp groups that are available. Uh, then try to reach out to the school, I’m sure school system itself is able to, uh, provide you connections, uh, government agencies, uh, if, if your child got diagnosed earlier, you’ll have access to early intervention and those agencies will be able to connect you with other relevant organizations.

There are insurance, uh, resource centers that can help you navigate, uh, the challenges, uh, with getting therapies. Getting treatment. Those can be covered under insurance. Um, there are other financial support, uh, support organizations that can help you alleviate some of the expenses that come with this. Uh, government waiver programs are available, uh, not only to support you financially, but also for our medical needs.

Right. You mentioned The ARC. Um, if you, if you’re listening to this, I’ll, I’ll put a link here, um, in the notes below and if you’re on the video, I’ll put it here as well for the interview that we did with The ARC of the Triangle, and that’ll get you, give you an idea of what types of services that they’re able to offer and will link you to their national link there too.

So, um, so that’s, that’s actually a great list of ideas of where to go because a lot of our parents that are listening, part of the premise of doing this podcast is to help parents know where to go. And, um, you know, those of us who have walked ahead of them for different reasons, I’m, I’m wanting us to be able to point new families that are coming in and starting their search now in the right direction.

So that was a great list. Whether their child is autistic or any special needs to follow through a lot of what you share shared just now. So, thank you for putting that together for us. Now you talked about your son being in a residential school. So is this um, like full year long?

Is it just part of the year? When is, when is he there?

So, this residential school is, uh, 365 days a year. Uh, they have both a day program as well as a residential program. My son started there in their day program, but within, within two months, we realized that we needed a full residential program. Uh, this residential, residential program is at this time about 40 years old, a very well-run organization.

They have a specialist in specialist in-house. Uh, they have 24 by seven nursing staff available, uh, while kids are in their group home. They have staff available to them all the time. So, to give you an example, my son’s group home has about nine kids living there. Uh, The staff comes about, uh, the full-time staff, uh, the, the staff that takes care of these kids, uh, all day comes into, into group home about 7:00, 7 30.

They get these, they’ve wake up these kids, help them get ready, take them to school, help them run their programs, bring them back to group home about 3:30, 4:00. Do regular stuff, regular educational programming, uh, vocational programming, what you say, uh, about, uh, 8:30-9:00, uh, the regular staff goes away.

They have overnight staff come in, overnight staff, they have two adults. One is always awake looking after these. , all of this is happening, uh, as a regular. Now, there are doctor visits, uh, that the doctors that are outside, they also have doctors come into the school okay. To look at them. So, psychiatrists, neurologists, uh, all of these, uh, specialists come in very soon.

They are going to start a dental program, uh, in school so that these kids don’t have to go out because it’s a big challenge for these kids to go out and receive all, all this medical attention. Now, while all this is happening, as I mentioned, they have regular programming going on, and 365 days, uh, not even Thanksgiving, not even, uh, New Years.

These, these teachers are there because this is what they love to do. And we have experienced that kind of love and commitment from them. Five years, I would say is, is a long time. But the way our son got care and love there, that fills our heart. And many people, many families, and many kids suffered through the Covid period.

Two and a half years was extremely tough for families with special needs. And we are fortunate that our son was supported with, uh, with this full-time program throughout this period. We, yeah, we did not have to bring him home. These guys manage it really well. Uh, we were not able to see him for about four months because they wanted to keep these kids safe and keep us safe. They wanted to create this bubble so that, uh, kids are not getting infected. But overall, uh, looking back how they were able to manage, uh, the pandemic and come out of it supporting our kids the way they did. Big, big kudos to them.

Wow. So, he’s there now. You said he’s 13 years old. How long will he be able to stay there?

So, uh, people are aware, I’m assuming people are aware of, uh, free and appropriate education for all. That’s, that’s a federal law. And they are eligible for free and fair and appropriate education until they are 22. Uh, so until they are 22, whatever is appropriate for them will be, uh, made available to them. So, they’re entitled to this. So, he will continue to be with this program until 22. I doubt there will be any miracle happening if things improve. If he doesn’t need the program, yes. I’ll, I’ll be waiting for that, but chances, yeah, chances are, uh, he’s going to be there until he’s 22.

Have you thought about what’s next? If, if he continues at the level of support that he needs now when he’s 22, so what will be the next step or what are you, like, how, how do you start researching those options?

So it’s, it’s, it’s a learning curve and given the trajectory that we have seen for our son, he will continue to need that level of support right. Now, one thing to note, when these kids reach the age of 22 entitlements end, right? By that I mean that you are not entitled, you are not going to be supported by laws.

Now, there are states and there are programs that are available to support these kids beyond 22, but you cannot rely on those programs. Governments change, laws change, budgets change. With those unknowns, you have to start planning ahead. . And that was one of the reasons I went deeper into financial planning and my wife went deeper into legal planning.

We wanted to make sure that we prepared ourselves in the best possible way to support our son, uh, for life. So there are things that you have to start doing, uh, when the child reaches the age of 18, when the child reaches the age of 22. Uh, how you can plan for those things. I’m, I’m happy to go deeper.

Right. Okay. And as we go into, um, to your actual work that I, I want to dig in more with that. Um, so before we leave this topic, is there anything else you wanna share about, um, parenting a son with, with severe needs, um, or any advice you wanna give to other parents who are at the beginning of that journey?

parents who are at the beginning of this journey, I would say try to build a village around yourself. Try to see how you can seek support from others. And if you have other kids, uh, who don’t have disability, try to see from their angle.

The life is long. There will be ups and downs. You have to ensure that not only you are providing the best possible support for a child with a disability, but also for the other family members you yourself probably need. , I know you have to support your child with disability, but you, you yourself, need support.

Uh, for that. I would say, try your best to prepare yourself to go out, talk to professionals to see how you are mentally prepared to support yourself and to support your rest of the family.

Excellent. Excellent.

Voice of Tonya Wollum: Thanks for tuning in to this episode of Water Prairie Chronicles featuring Amit Chawla. Join us for the rest of his story in Episode 58 where Amit will share valuable insights on how to plan for your special needs child’s financial future. Don’t miss it!

The post Episode #55: Parenting Autistic Children: Finding Gratitude in the Struggle appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this video, we sit down with Stacey Short, a mother who has raised a medically fragile child and found herself losing her sense of self as she took on the responsibility of caring for her son with Common Variable Immune Deficiency (CVID). Stacey shares her experiences, insights, and struggles as a parent of a medically fragile child, including how she coped with the stress, uncertainty, and emotional toll of caring for a child with complex medical needs.

Stacey now uses her experiences to help other women who may be going through similar struggles. She specializes in helping women aged 35 and above who secretly hate life a little too often and have become the person they never thought they would turn into. These women are having trouble recognizing their reflections, and now find themselves yelling at, resenting, and avoiding their loved ones.

In this interview, Stacey offers valuable advice and support for parents of medically fragile children, as well as for anyone who may be struggling with their own identity and sense of self. She shares practical tips on how to maintain self-care, prioritize your own well-being, and seek out support systems that can help you through challenging times. Her story is one of resilience, compassion, and hope, and her insights will be valuable to anyone who is navigating the challenges of caregiving and parenting.

Interested in working with Stacey? Book a free discovery call and find out if her coaching program is a good fit. Be sure to mention you heard about it on the Water Prairie Chronicles for a discount!

https://calendly.com/afewshortminutes

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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/

Stacey Short is a compassionate individual who grew up as an Air Force BRAT, constantly seeking to help others live a better life. With a B.A. in Psychology from the University of Oklahoma, Stacey’s journey took a turn when she discovered that her newborn son was medically fragile in 2005. She returned to the service industry to provide better care for his medical needs. In 2016, Stacey experienced the tragic loss of her baby brother to suicide, which plunged her into a dark place where she struggled to live.

With the help of health professionals and medication, Stacey was able to crawl out of the depths and, in 2020, she decided to fully embrace her calling once again. She pursued certifications in health, life, and clarity, and now helps women who have lost themselves in the roles of life and do not recognize themselves in the mirror.

Today, Stacey is the proud mother of two teen boys and some spoiled pups. She understands that the process of living a purposeful and fulfilling life is ongoing, and she continues to strive to make a difference in the lives of others.

Chickenpox could kill my child. So when we vaccinated my youngest against the varicella, um, we had to do it in two parts because it’s a live specimen. It’s a weakened specimen. But it’s a live specimen. So we had to watch my youngest for 30 days. 30 days for any kind of symptom that he was going to pop one chicken pock.

Because that’s normal with a varicella thing. If he started running a fever, we were to immediately separate houses. Not just room to room, but houses. But what am I supposed to do with that? How am I supposed to do that? Where am I supposed to go? You know, and it’s just those unexpected stressors.

Talk about, you know, we always talk about, we talk about a lot now lately, thankfully, the mental load of motherhood. Um, It really needs to be a more expanded conversation. It needs to be a more. Uh, prolific conversation, a more upfront conversation. Um, and then when you add on the mental load of a mother with a medically fragile child.

Where am I supposed to go if my young and then, and then I’d have to be, I’d have to choose which kid to go with. Because if I separate houses, I can’t go back to the other one because of exposure.

I mean, Sophie’s choice.

So now you have a sick child,

Truly Sophie’s choice.

Do you stay with the sick child or you do you stay with the one who is healthy but needs more protection?

Needs his mother.

Yeah. They both need mom at that point. You know?

Absolutely. And I literally cannot be in two places at once. And as much as my ex-husband was trying to help there’s just,

Well, and there’s something too with mother-son relationships too. It’s, it’s different. And there’s a strong bond there. And you’ve got two boys, so

It is,

yeah.

Mm-hmm. .

All right. Again, we’re getting into stuff that we need to talk about.

We’ll just continue talking and then you, you can record

I’m gonna do a quick intro. Let’s just, cuz we’re stopped now. So let’s go ahead and do this now.

Sure.

Um, all right. So welcome to the Water Prairie Chronicles. Our guest today is Stacey Short. I met Stacey through a Facebook group that we both belong to and she is the proud mom of two teenage boys.

And she’s gonna be sharing with us a little bit about her experience of having a child who is medically fragile and how she’s learned to work through some of the stress that she’s faced in her experiences. Um, Stacey, what else do you wanna add to that? Cuz that’s just a little tip of the iceberg of who you are.

Yeah, right. Um, I think that’s what happens when you’ve gathered 46 years on this planet . Um, I am the mom of two teen boys. They are 17 and 15. Um, I am a single mom. I’ve been divorced since 2014. I do co-parent, their dad is seven miles from here. Um, and, uh, I lost myself completely, um, in trying to keep my oldest son, his name is Bryce, trying to keep him alive.

And when I rediscovered myself again through therapy, um, and a lot of introspection, a lot of boundary setting, a lot of self-esteem work, a lot of, a lot of, a lot of, um, I really wanted to go and help women. who have lost themselves in the roles, uh, the demanding roles that they play in their life. Um, I wanted to help them rediscover themselves.

I wanted to help them quiet those negative voices. I wanted to help them tap into their inner wisdom, their inner godd-ess, and, and bring that higher self forward and live in the present and not live the same day over and over and over and over again, which is what I did for about 15 years. Um, and so now I am a transformational self-love coach, um, that specializes in women who secretly hate life a little too much, a little too often.

And that’s kind of taboo. We really don’t talk about that, um, as a whole. But when you really have a, a medically fragile child or a, a child that, um, just as, as a, as a little bit more challenge and takes a little bit more of attention, um, it’s even easier to lose yourself because then not only are you a mom, but now you’re a caretaker and that is a whole different kind of role.

And, um, so I wanna help women navigate that faster. And I really wanna be the coach that I wish I had had all those years ago. And instead of living the same day for 15 years, um, maybe had honored myself a little bit more instead of trying to numb all of the pain that I was trying to avoid.

So you can tell by listening to her intro that she’s got a lot to add to us here.

So, um, so we’re gonna dig into some questions in a bit. But first of all, during this season we’ve been asking our guests to share 2 Truths and a Lie about themselves. And we’re challenging our listeners to go on to Instagram, Twitter, or in the comments of the YouTube channel, and leave your guesses of which one you think are, which of the two you think are true and which one you think is the lie.

And a week after we post this, you can check back on Instagram and see what the answer is to that. So, um, so Stacey, what are your three statements that you’re going to give us for them to guess which are true and which is the lie?

Sure. Um, the first one is I am the absolute, uh, definition of a Sagittarius. Uh, the second one is I am, um, completely healed and lived my life perfectly.

And the third one is, and I have lived in multiple states, uh, anywhere between Alaska to Germany.

Wow.

All right. This is your cue. Take a pause on this one. Go answer what you think it is and come right back to finish the rest of listening to this one. So, um, so Stacey, you have two boys. You said they’re 15 and 17, right?

And, um, and so Bryce is your oldest, is that correct?

Bryce is my oldest.

Make sure I have, have all of my details. Wait, I, I’m sorry. I was talking there. What is, what is your youngest son’s name?

Garrett. His name is Garrett.

Garrett. So Bryce and Garrett.

Mm-hmm. .

And, um, so my kids are a little bit older. Not much.

They’re 20 and 22. So we’re, we’re just a few steps ahead of you on, on that, on, on the other side of the high school graduation line. from you . Um, so for Bryce, um, he’s, he’s part of what we’ll be talking about with this. And is he okay with us discussing this?

Yeah, he, he is, um, I think he’s come to a place of, if my story can help, then why not share it?

Good for him. Good for him.

There is no embarrassment about his condition. There is no shame. Um, honestly, he doesn’t know life differently like he was born with this. Yeah. And so, um, people always kind of go, gosh, I, I don’t know how he deals with this. If you were, if you never had a TV in your, in your house, would you miss it?No. You wouldn’t know. And so he doesn’t know any differently. Um, I hurt for him because his high school experience was not my high school experience.

Um, I hurt for him because I had a job at 16 and, and we don’t even know what that looks like for him. Um, you know, just all those kinds of like little marker, those teenage markers that I really enjoyed and hated at the same time.

He really just hasn’t had that experience. Right. Um, and so I hurt for him, but he doesn’t know what he’s missing cuz he doesn’t know to miss it. And so that’s a kind of a blessing there. Um, but he talks about his condition openly.

Okay, good.

Um, he’s not embarrassed by it. He’s not, there’s no shame. Um, this is nothing that he did to himself. It’s just a weird genetic fluke. Um, and I hope. My hope for him one day is that he does something with this, just like you were sharing about your daughter earlier. Um, I hope that he at least speaks about what it’s like to live with Common Variable Immunodeficiency. Um, I think, I think that would be really empowering for him one day.

So, so you just gave us the name of what it is. So it’s Common Variable Immunodeficiency.

Immunodeficiency,

okay.

Mm-hmm. .

And is this, is it, is that the full name of it? Does it have syndrome or anything as part of it, or, I’ve never heard of it. Obviously .

Um, yeah, it’s, he’s a rare bird. He’s a rare bird. Um, when you consider rates in autism are like one in 50 for boys.

Yeah. Which for some reason those rates are high. They’re are. The ratio is lower for, for boys than girls. Um, maybe it’s just a misdiagnosis or an underdiagnosis. Kind of like now we’re figuring out with ADHD in women. Right. Uh, late diagnosis here. Yep. So, um,

he is about one in 1 million, one and a half million.

Yeah.

Um, so I live in Las Vegas and there are 2 million people here. And I know of two people in this city besides Bryce.

Oh, wow.

That live with CVID. But their CVID combination is different than his.

Okay.

So your immune system is made up of IgA, IgE, IgG and IgM generally. Um, the IgA and the IgE are generally part of like the allergy part of your immune system.

Um, IgA has dual function, but generally part of your, so if you’ve got like a wheat allergy, you’re aller allergic to dogs, it is actually your immune system kicking in. And, and, um, so that side of him is fine as far as him, his immune system goes, what isn’t okay is the bacteria and the virus fighting side of his immune system.

So he was, um, so the IgG are basically the, the soldiers. So if you go back to high school biology, right, you’ve got, um, something that attaches to the foreign in invaders in your body, and then white blood cells, the, the, the mi the macrophages come and they eat it up, right? . But how do they know to attach to those things?

Well, they’ve got like kind of generals, right? And that’s the IgM and the generals say, oh, that’s foreign. Go attach to it. So then the white blood cells can come and eat it. Well, he doesn’t really make generals and he doesn’t really make soldiers.

Okay.

So there’s no, um, signal that these things shouldn’t be here.

And even if the, what little immune system is in him does signal, there are not a lot of soldiers to go attached to it, to tell the white blood cells, Hey, here, you want to eat this guy? So, um, like for him, he doesn’t run a fever.

Okay.

He doesn’t run a fever. And that’s, that’s the first sign

His body doesn’t know, right.

His body doesn’t know. It just allows things to come in, set up, shop, hang out, invite the friends, like, yeah. Yeah. And so he’s had a lot of strange illnesses in his short. 17 and a half years on this earth. Um, the weirdest one that almost took his life, um, what is called, uh, it was called pseudomonas pneumonia.

And, um, it just came in and set up shop and hung out because his body couldn’t detect that it was there.

So as you’re explaining that, um, I have multiple sclerosis and I’m thinking the whole time, so he doesn’t have the, the immune system to fight. I have an immune system that decides to fight me instead

Correct.

And that’s the difference between you having, um, an autoimmune disease system disorder, whatever you. Syndrome. He has a primary immune deficiency. Also, not to be confused with an acquired immune deficiency. HIV type stuff. Right. And so his is truly a genetic fluke where his body, just some gene activated.

Um, my, my family is usually autoimmune. My aunt has ms, my mom has Hashimotos thyroiditis. So super familiar with those.

Um, but Bryce has gotta be, you know, the, uh, uh, the original one with, um, a primary immune deficiency.

Interesting. Yeah. Cuz I, like I said, I’ve never, never heard of this before. So this is, this is new for me.

yeah.

So the, so it’s affecting his, his health risk, how does it affect his daily life?

Yeah, his daily life. Um, , his body fights to sustain. To sustain,

Okay.

Let alone grow.

Okay.

So he never hit that growth spurt that other children hit, especially boys, right?

Yeah.

They always, they usually have this just massive growth.

He never had that. Um, he is tired a lot, a lot, um, because his body is just fighting to, to sustain.

Um, and so a lot of lethargy, a lot of low muscle tone. Um, a lot of just things of, of that nature. Um, when he does get sick, like, um, he actually had a raging ear infection last week raging. Um, normally.

If, if you don’t have a medically fragile child like Bryce, the doctors will say, um, oh, we’ll just wait it out. Cuz ear infections, they don’t really treat as much any longer. Right. They just kind of let it write, write its course. But for Bryce, you can’t, because it’ll stick around, it’ll stay, it’ll do damage, it’ll go into something else, it’ll mutate.

I mean, it’s terrible. And so I took him, or his dad took him to the doctor on a Saturday and, and an urgent care kind of call, but only to his primary. We don’t do normal urgent care clinics.

They don’t know what to do with him, . They don’t know what to do with him. Um, and so we went to Hi. He went to his doctor, and his doctor put him on some big, big sier antibiotics and some eardrops.

Um, and usually they say, oh, 24 hours and, and the antibiotics have kicked in and you should start feeling better. So that was on Saturday. It wasn’t until Thursday that he was sort of out of pain. .

And then he was still sleeping 13 and 14 hours a day, and then still being tired, still wanting to take naps.

Um, and so he doesn’t go to a traditional high school Right. Because of reasons like that.

Oh, yeah.

Uh, he goes to school Wednesdays and Thursdays from 11:45 to 3:30. That’s it. Okay. Um, I, yeah. And, and also the exposure into,

Well, that’s, that’s what I was thinking,

that level of Yeah. Thousand kids in a school. I’m just asking for trouble at that point.

Yeah. One sneeze near him. Yeah.

Especially with Corona. Especially with COVID. Yeah. So we’ve been isolated for three a long time now, and unfortunately my youngest, we don’t talk about this, the side effects or this bystanders. Bystanders. Right. And so, like my, my youngest poor Garrett, he gets the brunt of this too.

because he can’t , he can’t go to school. Um, Bryce’s Immunologist has explicitly advised against it because if Garrett goes to school and is exposed to a thousand kids, then we might as well go to school and be exposed to a thousand kids because Garrett’s gonna bring it home and, and my son is not protected.

Um, and so Garrett’s had to homeschool for these last, even when they went back to full in person, he couldn’t go.

And so he’s isolated because of it. And I just, I feel terribly for, for him because he’s got like this, he’s missing that peer-to-peer relationship, those social relationships that I just absolutely loved in high school.

Right? I still have real best friends from high school 30 years later and, and my kids missed out on that. And that really makes me sad for them. It really makes me sad for them. It does.

I think a lot of our kids, um, their tho those that were in school since Covid, so the last few years, especially at the high school level, their, their path is their path.

But it’s not what you and I had just because the world changed during all that time. And on top of that, now you also have, whether it was COVID or not, would the boys have been able to go to high school?

Yeah. Um, questionable at best. Yeah. Even if Covid wasn’t exac around, that would’ve been questionable at best.

Um, I think that Garrett definitely could have gone, but, but Bryce has always missed a lot of days in school.

Um, a lot of days. And so we, I mean, he did go to, he went to middle elementary. He did go to middle.

I mean, he, he is, he has been in school. Um, but he missed like 40, 40 days is that’s, that’s kind of average for him, for missing that much school.

And so, um, well the school did provide a tutor, uh, once a, for every eight hours that he missed, he got an hour, hour of, uh, special education tutoring. Um, and so we did take advantage of those school, um, programs. But it’s not enough. It’s not enough. And it doesn’t make up for the peer-to-peer relationships ever.

Right, right.

Ever. So, um, even if Covid hadn’t been around, his high school life would’ve been stunted, just like his middle school and elementary schools lives were not full and robust like mine was.

It’s, it’s, it’s interesting watching them grow up , you know,

Well, and then if you, you know, if you talk about ADHD, one of my children has rejection sensitive dysphoria, part of it.

Yeah.

And so that really does affect how he manages expectations, how he manages feedback, how he manages. ,

Yeah.

Life. Um, and so that adds a whole other component to conflict resolution. Um, and I don’t really know. That is out of my scope. That is out of my scope. As, as, as scoped as I am, I’m not scoped there. So,

But you’re supposed to be proficient at all of this

Ah, believe me, I tell myself that. All day, every day, or I used to. So yeah. That perfectionistic pattern is, uh, that was an ugly one to break, believe me. Yeah, absolutely.

But this is why having these conversations are important though, because, you know, we’re chatting right now, but someone listening to this is going to hopefully realize that they don’t have to have all the answers either. You know, none of us have all these answers.

Oh God. No. Nobody does. Nobody does. But ask questions. Please ask questions.

You are empowered to ask questions. I I want you to a, ask questions. I want you to advocate for yourself. I want you to use your words. I didn’t. And I was miserable because I thought I had to have all the answers. And I was the go-to girl. I, I got it.

No problem. I’ll handle it. Give it to me, blah, blah, blah, blah, blah, blah, blah, blah, blah. You know, if you want something done, do it yourself or want something done. Right. Do it yourself. No, That is a perfectionistic pattern that does nobody service and we need to let it go. Um, but I also didn’t feel empowered to ask questions because when I brought Bryce to the doctors at three months of age and said he’s only sleeping 45 minutes at a time.

And I am ragged and I have to hold him in order for him to sleep. and, you know, non co-sleeping parents don’t advocate for that. Co-sleeping parents do. I don’t care. I was just tired. I was tired.

Yeah. And his doctors dismissed me because I was a first time mom. And so they thought I was just being neurotic.

They didn’t trust that my instincts were kicking in. Um, they didn’t trust that I was, I’m the oldest grandchild, children of 12, or the oldest child of three, or that I started babysitting kids in my neighborhood at 10. None of that mattered to the medical professionals that I was taking him to. Mm-hmm. , in fact, at like six months of age.

I took him to the pediatrician again because he had strep throat and an ear infection again.

At, at six months of age. At six months. Okay. That’s supposed to be impossible.

Okay. That’s supposed to be impossible is what they tell you. He was like, the first year he was alive, he had 12 positive strep tests and 24 appointments for ear infections alone.

Just for those two reasons alone, there were months that we were at a doctor’s office, an urgent care, an ER, something for weeks on end, Saturday and Sunday included. So, um, anyway, I was living in this small town in Oklahoma, which is where my parents are from. I’m, and um, I took him to his established pediatrician and I said, I’m watching his six to nine month clothes get bigger on him.

and I don’t understand why. Do something. And what his pediatrician told me, I will never forget these words. My mom was in there with me, is she patted me on my hand and said, oh, Stacey, white middle class children under doctor’s care just don’t die in this day and age.

I’ve never felt so dismissed in my life. And that was the beginning of not using my voice because why would I?

Clearly I was overreacting. Clearly. It took him throwing up so violently that it came out of his tear ducts. For her in the office in front of her three months later to go. Oh, okay.

And at by that time I was so sick and tired of being dismissed and watching my kid die. Literally. Yeah. Um, that I said, you are out of your scope. You are in over your head. We need to be in a children’s hospital. I don’t care if I have to drive Kansas City, St. Louis, Dallas, I don’t care, but we’re going and we’re going today.

Yeah. Good for you.

And she said, well, there’s one an hour away, but I don’t have privileges. And I said, I don’t care. , I don’t care.

Um, and she did honor that and she did call ahead so we didn’t have to wait in the ER and all of that stuff.

Um, so I am grateful to her for that. And we were there four hours before a cardiothoracic surgeon came in and said, I think I know what’s wrong with him. (Misdiagnosis number one.)

Um, but if I put him on my operating table today, he will die.

And I had been screaming for months that something was wrong with him. Screaming.

And I was just dismissed. Dismissed. I watched them put an IV in his head because his veins were so sick.

That they couldn’t keep an IV in him to just give him hydration. Let alone anything else. And so we had been there maybe six hours before they had put a central line in and been and fed his heart TPN directly because I was losing him.

I was losing him. He was dying, and, um, we came out of that hospital stay. Um, they went in and they did a fundo placation, which is when they basically tie a knot in the top of the stomach.

They flipped the stomach over itself. They installed a feeding tube, um, directly into his stomach. And, um, he had py um, some mild pyloric stenosis, which is a thickening of the bottom of the stomach so it doesn’t empty into the intestines like it should.

Um, which was causing his projectile vomiting. Um, however, they completely missed the immune deficiency and it wasn’t until he was 22 months of age.

Oh wow.

Um, and I almost lost him again before he was diagnosed with CVID.

What did they think? The doctor that said he couldn’t put him on the operating table, what did he think it was?

He thought it was, um, py pyloric stenosis.

And that, the fundo, um, valve, the valve at the top of the stomach was not closing properly. That’s why you think about when the babies were little, right? And when they started sitting up about six months of age, that that valve, that sphincter actually naturally tightens. So they stop spitting up as much. If you, if you remember that back.

He didn’t. Um, and then the pyloric stenosis, because the buildup of the pressure not emptying would actually cause the projectile vomiting. And that’s why at his worst, he literally vomited through his tear ducts, which is

So alarming. I can’t, that’s, that’s horror story. That is, you know, that’s like exorcist level crap,

Um, and you never wanna see that out of a tiny baby, let alone your own tiny baby. Um, . And so that’s what they thought was wrong with him.

But, uh, that wasn’t, I mean it maybe may the pyloric stenosis. Yes. Um, but no, truly what was wrong with him is he had no immune system and he was sick all the time.

And instead of running a fever, cuz he had no immune system to fight anything producing a fever, he was throwing up instead.

And so when he starts throwing up, even now at 17, I’m like, uh oh you’re going downhill. That’s my first clue.

Well, you know, you know, you know what the clues are

Now, now, yeah. It’s amazing how untreated illnesses that we take, kind of like for granted, right? Like daily I, childhood illnesses, whatever. They can do a lot of damage.

They can do a lot of damage. And, um, Bryce’s lungs are scarred to this day because of the amount of, um, pneumonia and bronchitis.That were, that was allowed to come in, set up, shop and hang out.

Because there were no fevers. There were no, there was nothing, uh, signaling that he was ill. Other than a, than throwing up. And at that young of age, they just go, oh, it’s just acid reflux. It’s just regurgitation. It’s just, oh, you need to slow his feeds down.

Because his stomach isn’t emptying it. No. He was sick. He was sick. And the second time I almost lost him is because we’d had him on multiple courses of antibiotics due to multiple infections. And he got C.. Diff so badly that his bowels stopped moving.

And he almost became septic. So this hospital stay was three weeks. I was six months pregnant with my youngest. I was so much under stress that my OB said, your child has stopped growing in utero.

And you need to stop, otherwise, I’m putting you on bedrest. How? How am I supposed to do that when my kid is in the, the, the hospital here? Um, and so that hospital stay, we went in for ilias of the bowels.

Then we found out it was C diff. Um, then the attending didn’t accuse me directly.

Oh no.

But because she could not replicate these vomiting sessions that my mother and I were reporting, she put in a CNA into our room 24 hours a day. And that CNA documented every time I touched my kid. Because what the insinuation is, is that I was Factitious disorder by proxy.

Munchhausen’s by proxy is right pretty much how we all know of it if you’re old school. Um, and if it wasn’t for a CNA telling me that, I never would’ve known that that was the in insinuation. So I’m very thankful for that woman, for using her voice because she knew I wasn’t.

But that’s, that’s what it ended up being. So they were more focused on me than they were on treating my child for the first week that we were there. And then the labs started coming back. Um, they, they blamed the C diff on me because I was advocating for him to being overmedicated by, uh,

It was more illnesses, antibiotics and all. Right. Right.

Correct. Right. Um, and he was, he was working out, part of his CVID is that he gets clammy easily. And so the tape around his IVs were loosening. And because he was 18 months, 19 months, 20 months old, the IVs were working out, working out, working out. Well, after the fourth IV in a week, I said, absolutely not, no more put a PICC line in.

Oh, well that was it. Because now I’m demanding medical intervention for my child.

Well, it takes three sticks to get an IV in this kid and the, and then it’s only lasting like a day, a day and a half.

How is this extreme medical intervention that I am demand? Like I don’t understand that.

Please make that make sense. And um, so then they, they did x-rays of his lungs, um, and nothing showed, but he was still like, they could hear issues breathing,

And so they did a CAT scan and in the CAT scan his lungs were opaque because he had pseudomonas pneumonia.

Which is a pneumonia only AIDS patients get, COPD patients get, cancer patients, oncology patients get, it’s not normal for an, an almost two year old to have pseudomonas. And that was the first clue. , that was the first clue that they paid attention to. But if you go back and you look at his medical records, which are like,

I’m sure

You know, thousands of pages, um, you can see somebody drew drew blood prior and that his IgG levels were low, low, low.

Almost nonexistent. But no, nobody ever paid attention and followed up on it until he was 22 months old when we finally got the diagnosis, finally.

Um, and he was two years old when we got his first port, because if he’s sick, his veins are sick.

That’s why they were shredding and rolling and blowing.

And yet they wanted to persecute me for asking for a PICC line. And, and I just wonder how many children have died because they didn’t have a extroverted parent. Yeah. Me, me and I, and I think that’s just terrible.

And so now, if I can use my voice to help other parents speak up, advocate, who cares?

If you don’t know, your voice is shaking. Trust your intuition. You know your baby better than anybody. You do. And if something’s off, something is off, it is. And, and use your voice. Um.

We say this a lot in these interviews. A lot of, a lot of my parents that I’ve interviewed have come to the same thing that you’ve said is that, you know, it’s, you’ve gotta trust your gut as, as a parent of a child, you know, the only wrong thing is not to say anything, because if you think there’s something, let the doctor be right and you be wrong, but say something because there’s a reason that you’re questioning this.

Absolutely. And you see your child 24 hours a day, you know more. than anyone else sees.

How, okay, so how did you juggle those early years?

Um, I didn’t, I didn’t do it well. I did it at the expense of myself.

Truly, I did it at the expense of my marriage. I did it at the expense of my friendships. Um, I had no boundaries. I had no, I didn’t know how to say no.

I didn’t know how to ask for help. I took on everything and anything that anybody would ask me to. I worked 50 hours a week on top of it. Um, my mom did come and move in with us because we couldn’t take Bryce to, uh, daycare with that kind of diagnoses. Um, cuz again, chickenpox can kill him,

Even to this day, chickenpox could kill him.

Um, we started immediately on immunoglobulin infusions, which costs $30,000 a month. Um, a nurse comes in, it’s a six hour process. The older he gets, the longer it will get because it is very hard on the kidneys. It is about 10,000 people in a bag. And, and I, a small IV bag, not even the, like, the big ones, but the half ones, it’s about 10,000 people in that product.

So he gets a great, uh, cross section of vaccinations, natural immunities, blah, blah, blah, blah, blah.

But because your blood refreshes every 28 days it only sticks in his body for about a month.

And so this will be a continuous process for the rest of his life. Um, and so in those first few years, you’re trying to navigate any and all of that, and you’ve got this kind of specialist and that kind of specialist.

And there was one point in time that we had 14 medical specialists.

At one time. 14. And I, I know I was saying earlier that I didn’t know how to ask for help, but I also felt like I could not.

Because none of the doctors talk to each other. None of ’em. There’s not a system they don’t share.

There’s not an email. They don’t pick up the phone. They don’t even text message. So guess who gets to be the conduit?

I have to remember it all. I have to articulate it all. I have to, uh, regurgitate it all appropriately in order for him to get the proper medical care. So I learned to speak doctor, which was a detriment when I was being accused of fictitious disorder.

Oh, right.

Because I was speaking medical.

Also, I have a degree in psychology, so they didn’t like that either. . Um, I could, I can’t. Um, all of that didn’t save me though, because I grew up as a people pleaser and a codependent, and so I took it all on and then some, and, um, I lost every ounce of who I knew I was beforehand.

Every ounce. I put on weight fast, I was numbing. I was eating to numb. I was drinking to numb. Um, . I had to work a swing shift cuz my husband worked morning. So there was always some apparent home.

Um, and so the lack of sleep, just cuz you come home doesn’t mean everybody is asleep. So I was going to ask, when did you sleep?

You know, that’s, my sleep was very broken for many, many, many, many years. Cause Bryce was on a feeding pump and when the line would get kinked, it would alarm. Okay. How do you get a three year old not to turn over at night? You don’t. Or it would disconnect and it would soak his whole bed.

So then he would wake up wet, sticky, you know, gotta love those 3:30 showers because there’s formula all over.

Um, or he’d get sick and he’d throw up. Like, I, I didn’t sleep for years and even when I did start to sleep, I slept very lightly.

Because I was always listening for him. And so it. Uh, I still sleep lightly to this day. Just not as badly.

Oh, I’m sure.

Um, yeah. Definite sleep disorder, , definite sleep disorder, , all the, all those nights in the hospital, like, oh gosh. Yeah. Forget it. It was bad. It was really bad. Um, so I, I literally was held together by sheer stubbornness. Nothing healthy. Nothing healthy at all. Sheer stubbornness

And the will to have my child live. That was it. Um, but it cost me myself and it cost my marriage eventually. Me, not Bryce me, right. Because I was so lost and I was so unhappy and I was so, I was looking externally for validation and love and affection and solace and support and.

And my, my ex-husband just couldn’t give it to me at that level because I was demanding it from outside and not doing anything internally at all. At all. I didn’t know how. And so, um, I was demanding of people things that they couldn’t give.

Did you eventually find some, some supports?

Um, there are support systems out there, there are support groups out there, and what they did help me do is advocate better for my child, um, ask the right kind of questions and stuff.

Knowing what you know now, yeah. Looking back, what would you do differently than what you did do?

Gosh. Um, I would get into therapy immediately.

Immediately. Therapy, coaching, something, some sort of mental health thing. Support group. Fine. But a led; a guided support group.

By a mental health professional. Don’t just get on a message board. Cause that’s what I did. I got on a, on a, a message board, you know, of, uh, a Immune Deficiency Foundation, IDF. Um, but then it’s all the parents kind of with each other. There’s no overseeing professional there, guiding the conversation or, or allowing support or whatever.

There’s nobody guiding it. And so we just all kind of together. Well, me being me, I took it all on. So I would’ve gotten into some sort of mental health supported therapy. Um, not just into a random messaging group, uh, uh, full of parents. Um, I didn’t get into therapy until eight and a half years ago, almost nine years ago.

 If you’re advising a young parent now, at what point in their journey would you recommend that they look for that counselor? Or?

Today. Today.

From the beginning? Okay.

Today, whatever day it is for you, wherever you are in your process, today’s the day.

Okay. So before you feel like you need it, um, get it started. .

Oh yeah. Because the time when you decide, well, like when you figure out like, uh, maybe I need, it’s, it’s way past the need.

It’s way past the need. Um, yeah. I wish I had had the foresight or somebody had recommended to me. Um, in all of the ER, urgent care doctors visits, I wish somebody had said, how are you taking care of yourself? Mm-hmm. that was never asked. Never. Not once, never did any medical professionals say, this must be a lot for you. How are you supporting yourself?

Never a question. Never a question.

I wonder if that’s any different now than it was.

I don’t know.

You know, I mean, it hasn’t been that many years, but it’s been long enough.

It was 15 years ago,

because I’m thinking the last, the last just physical that I went in for.

They had a list of questions and that was the types of questions they were asking. You know, like, like do you Yeah. You know, who, how many supports do you have? Like, you know, naming a couple of them, things like that. Um, and then how do I feel going through the, the emotional side of where am I emotionally right now?

Um, but you bring up a good point, whether that’s part of it or not, that should be part of all of those visits because you’re the caregiver for this child that’s their patient. So to make sure that you’re a healthy caregiver would be a big piece of it.

Even if you don’t have a child that has challenges like ours, it should be more of a conversation in the pediatrician’s office. Mm-hmm, you know,

I agree.

Just once a year, ask the parent, how are you managing? How are you dealing with this? This is new to you. There is no guide.

Again, you have to get a license to drive a car, but there’s nothing that says you can or can’t have children. Nothing. I just think about like parenting without medically fragile children or challenged children and how much we lose ourselves in that and how much, especially being a people pleaser and a codependent, I hated my life. We don’t talk about that.

It’s kind of taboo. Yeah. To say, I hated being a mom because I wanted to be a mom all my life. I knew I wanted to be a mom. And for, especially for women who struggle with fertility issues, they’d probably hear me say that and go, what a blessing.

Yeah, you’re right. But it sure didn’t feel like it. It felt like loneliness. And an endless black hole.

And I hated my life. Um, and I couldn’t say that. So what happened Instead, instead I started resenting everything. Instead, I started resenting my husband who was fast asleep at midnight when I came home from work.

And I started and, and, and by the way, I’m the one that got up. Right, right, right. I started resenting carrying the mental load of motherhood that now we are having discussions about. That wasn’t a discussion 18 years ago. Um, I started resenting the fact that my mom could come and go actually pleased and leave me in the lurch.

Um, I resented the fact that people were having birthday parties and we couldn’t go.

I resented not having a social life. I resented, I resented everything and. and I didn’t talk about it because I felt like I was the only one. I felt like a horrible wife, a horrible mother, a horrible friend, because I hated everybody

And so instead of expressing that, I just internalized it and it just ate me alive. Um, and it led to the de the downfall of my marriage. It did.

And I wish I had known, I wish it had been okay for me at some point in time to say, none of this feels good and I need to talk about it. But it’s so taboo when you hate children. To say you hate your children. That I feel like I have anxiety just saying it now. But it wasn’t that I hated my children. I hated the mental load of having children and not having anybody to share it with. But I didn’t know that that was a thing.

I didn’t know that was a thing. And so it kept me silent.

Well, and you’re exhausted.

It kept me sick.

You’re exhausted during those times. You’re, you know, you’ve got the mental stress, you’ve got the physical stress. You were working a full-time job on top of being a full-time mom that, that didn’t leave room for anything left at that point.

So, no, that’s, um, no, and so nothing, so your, your suggestion for finding a counselor today is a good suggestion for that. And finding times for yourself. You’re not being selfish on that. You’re actually being very giving. If you can take time for yourself, to

Bryce: surprise visit.

That’s, that’s Bryce.

Bryce: Speaking of the devil. ,

We didn’t call you a devil.

I, I might have. No.

No. She’s been nothing. Nothing but positive here.

We’ve talked a little bit about this, about, um, some of the misconceptions of, of parenting coming in without really calling it that, but what do you think that’s, what are some of the misconceptions that people have about parenting a medically fragile child?

That you have to do it all on your own? That, um, and that medical professionals are correct. Now, I’m not saying go to Web MD and diagnose a kid.

No, please don’t.

I’m not saying that at all.

Bryce: Oh yeah. That’ll work actually.

What I am saying is trust your intuition and, um, I don’t know what would’ve happened if I had just taken the diagnosis of, oh, his stomach just needs to be opened and he needs a feeding tube.

We’ve talked a lot about the trauma that you’ve gone through. The, just how you were giving all of yourself, but not taking care of yourself. Um, and you did not have the counseling that you, that you wish that you had had. Now, what did you learn about self-care and prioritizing yourself and what are you doing now or would you tell the next parent to do?

Yeah. Um, if you’re not okay, your kid’s not okay. I mean, it’s really simple. . It’s um, it’s really simple to say,

Not simple to do, but really, if you’re not okay, your kid’s not okay. Your marriage isn’t okay. Your partnerships aren’t okay, your relationships aren’t okay. Your physical body is not okay if you are not okay up here.

So if you’re not okay, your kid, nobody else is around you that counts on you, is going to be okay. So what does self-care look like, right? Self-care looks like stepping away from everybody and sitting just with yourself. Self-care looks like loving that inner child that is screaming to be noticed and seen and heard and validated, but it needs to come from you.

So self-care looks like giving yourself grace. Self-care looks like doing creative things. It looks like dancing. It looks like singing. It looks like music. It looks like twirling in circles, if that makes you happy. It looks like physical activity. , you’ve gotta keep your serotonin and your a dopamine levels up, especially your serotonin.

That comes from great gut biome. So take a fantastic probiotic. Eat fermented foods. Stay away from gluten as much as you can. Um, that looks like moving your body. I don’t care if it’s 10 minutes. I don’t care. Do something. Put on some booty shaken rap songs, booty Shake for 10 minutes a day. Um, because not only will that boost your serotonin, but it is some sort of physical activity to help your body stress relief.

Meditate if you can. If you don’t know how, ask somebody that you know does, um, breathing techniques. Let me teach you one right now. Super easy to do. You can do it at any point in time and nobody knows if you’re doing it. And, um, but it actually has been shown to bring down your cortisol levels. Bring down that sympathetic nervous system, the parasympathetic nervous system that’s.

Screaming at you. Bring down your blood pressure, bring it, bring it all down. It’s called box breathing. Super easy thing to do. It’s called a box because it’s four seconds in four seconds. Hold four seconds. Inhale. Exhale. Four seconds. Hold. So it’s just a box. So you breathe in through your nose and you’ll hold it.

And then when you exhale, I want you to do like you’ve got a straw and I want you to force it all out. So, and when you inhale, your belly should inhale first. That’s another thing. Most of us breathe in in stress situations, trauma situations. Most of us breathe with our chest.

True.

All right. So what is something positive that has come out of your experience as a parent of a medically fragile child?

Yeah, so here’s an amazing life transformation you guys. Um, if you can find a, something good out of a tragedy, . Um, you’re winning, you’re winning the game, truly. And it took me years.

Yes. I walk on eggshells a lot of the time because I worry about my son’s health again. Chickenpox could kill my son. And that’s scary.

That’s really scary. Um, but it also allows me to see the fragility of life and not take every day for granted and not live again the same day over and over and over and over again for years.

95% of the thoughts that you have were the same as yesterday and the same as the day before. And they’ll be the same tomorrow if you’re not mindful and pay attention to it. So I urge you just to break out of that cycle, do something different today than you did yesterday, and it’s amazing the growth that comes with that. Even something little like color. Get a kid’s, get a kid’s coloring book. Get an adult coloring book color. Reconnect with that inner child. Remember who you are at your core.

We’ve mentioned a little bit about your coaching and all. Tell me what exactly it is that you’re doing and how people can get in touch with you.

Um, so I help women 35-ish, you know, who secretly hate their life, um, who hate the person they’ve become, who find themselves yelling and resenting their loved ones when they love them so deeply, who don’t remember who they are at their core. They’re lost in all of the other labels and roles that they’ve taken on or have been given to them, and they’ve chosen to accept maybe unwittingly, unknowingly.

But you did. Um, and that was an epiphany for me. Um, I help them rediscover their life. I help them set healthy boundaries. I help them get back into the mind-body connection. Um, I actually have a technique called the Empowered Authenticity Technique. And it is, um, a culmination of breath work, um, of meditative practices, of inner knowing practice.

And, um, I help women make aligned decisions using that technique. Um, and those aligned decisions feel true. They feel powerful, and they feel okay to say yes to versus begrudging. Yes. Right? Mm-hmm. , I don’t want you to begrudgingly say yes ever again after working with me. . Um, I want you to be able to use your voice.

I want you to be able to honor yourself first, and not in a selfish way, um, but in a way that is empowering for you and your family. And so that’s, that’s what I have the honor and the privilege of doing now. Um, it’s a 12 week course. It’s an hour a week. Um, we get really honest, get really honest about where you are and how you’re contributing to your own and how to get out of it, how to get out of it.

Um, and so I am revamping my website right now, but you can go to afewshortminutescoaching.com. Um, and there’s my Calendly links in there. You can book a discovery call with me, a vision into action call. Uh, it is complimentary. Um, we can talk about if we’re a fit or not. And if we’re not a fit for whatever reason, if you don’t resonate with me, , that’s fine.

I’m not for everybody. Um, but I, I am surrounded by amazing coaches in my life who I could refer you to, and I have no problem doing that. Um, obviously I do have some specialties in like medically fragile children. Um, that doesn’t necessarily have to be you, but I get it if it is. Um, I really am looking to work with women who are just really lost, are just really lost in their life, really stuck.

Um, so my website, I’m @afewshortminutescoaching on Instagram, Stacey Short on Facebook. Um, also @afewshortminutescoaching on Facebook. I’m also on TikTok with Stacey coaches. Um, I’m on LinkedIn, Stacey Short, um, I’m wear wearing a red outfit throughout all of them.

With those that are listening, I’m gonna put in the show notes.

If you’re listening on, um, the audio or in the description, or if you’re watching the video, or if you’re on the website, it’ll be right there in front of you. But we’ll put in all of those, the links that she just shared so you can, can get to her website, to her Facebook, and, um, her other links there. And, um, do you want to mention your podcast that’s gonna be launching?

It will be called A Few Short Minutes. And the idea between A Few Short Minutes is it really, first of all, it’s my last name, so there’s that.

I noticed that .

But really what it’s about truly is it really just takes a few short minutes to recognize your thought patterns, to catch them. Um, it only takes a few, few minutes a day to be present, and then eventually you’ll expand that.

But I just want you to start small and, and, and I don’t want you to beat yourself up about it if you’re bad at it. Don’t even say that. Just I’m learning. Give yourself that grace. And so A Few Short Minutes is just kind of the basis of how we coach, of how I coach, and that is starting small and building because even small hinges still swing really big doors.

Stacey, thank you for joining us today. I really appreciate you opening up and, um, and even having a quick hello from your son too. Was kind of fun. But thank you for joining us today.

It’s absolutely my pleasure, Tonya. Thank you for having me and spending so much time with me.

I’ve really enjoyed, um, talking to you bantering, sharing my story. Um, it’s an honor. Thank you.

The post Episode #54: What it’s Like to Raise a Medically Fragile Child with CVID appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this episode, Tonya continues her conversation from Episode 52 with Amanda Owen, author of the Owen the Wonderer book series and founder of the non-profit, Puzzle Pieces. Owen is the main character of the children’s book series, which includes real people from Amanda’s life. The series aims to start conversations about inclusion and acceptance of individuals with disabilities, and each book includes questions for parents and teachers to help facilitate these conversations. Amanda started the series to provide a tool for parents and educators who may not know how to approach the topic of disability with children. The books are based on Amanda’s experiences as a special education teacher and the founder of a non-profit organization that advocates for individuals with disabilities.

If you missed the first part of this conversation, be sure to listen to Episode 52 to hear Amanda’s story of growing up as the sibling to a brother with a rare genetic condition. She also gives good suggestions on how parents can prepare for their special needs child’s future care. You can watch Episode 52 at https://youtu.be/sapGfxihznY.

Since recording this podcast episode, Amanda has launched another project!  She created a Gratitude Journal for moms raising children with disabilities. With the help of 30 mommas from across the country, Amanda made something that she wished her mom had 41 years ago when she discovered her brother had a rare disability.

This journal is meant to not only help moms find joy in the hard, but also build a village of other moms walking similar paths. You don’t have to be alone. This journal will help you connect and find gratitude in your journey raising your child.

You can order your Gratitude Journal HERE!  ➡ piecesofme.org/gratitude-journal

Amanda loves to connect! Find her at:

          Website: piecesofme.org

          Podcast: https://podcasts.apple.com/us/podcast/pieces-of-me/id1547078857

          Facebook: https://www.facebook.com/piecesofmebyamanda

          Instagram: https://www.instagram.com/piecesofmebyamanda/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

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/

Amanda Owen is an accomplished children’s book author, blogger, podcaster, and nonprofit founder/director. She is a lifelong advocate for people with disabilities, inspired by her older brother Nick. Amanda is dedicated to empowering women to find their purpose and lead fulfilling lives, free from societal expectations. She and her husband, Justin, have two sons. Amanda’s inspiring message is to dream big, work hard, own your mistakes, and laugh often.

Yeah. Well, switching gears here. You have two books, three books out, in the Owen, the Wonderer books? How many are out now?

We have two books. Two. It’s a series of two. Mm-hmm. Now we have future books that will come. We want that to be a series. Well, it is a series cuz it’s two already.

I say it’s two. It’s two. We can officially call it a series at two. Yes. So, tell us a little about, about who Owen is and why he’s the one. And this is, those who are listeners, you can’t see this written, but it’s Wonderer. “W-O-N-D.”. Not “W-A-N-D.” So, he is not out wandering around. Maybe he is, but. So tell, tell us about Owen and how he came into being.

So, Owen is named after, obviously my last name, so that’s the main character. A lot of all the characters in the children’s book, are, are real people in my life. and so growing up, and being the advocate and the sister I was, what I always say, I say this all the time as an advocate, I say, when we know better, we do better.

"When we know better, we do better." – Amanda Owen
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It’s not that people intentionally are trying not to include or accept or understand. They’re just too darn scared to ask the questions of the fear of doing it wrong, or they don’t know what they don’t know. And so, you know, I was always the kid in the class, you know, that people would ask, I was never offended if they asked because I wanted them to ask.

So, I’ll tell ’em how to think. So like, I guess I still do that today, but had I wanted you, I wanted people to feel, for me, to make people feel comfortable enough to, as long as you’re asking in a respectful way, I’ll tell you anything you wanna know. and so that’s kind of what kind of came out of the wonder, like Owen the Wonderer.

You know, why does this, you know, why does she have Down Syndrome? You know, why does she throw a fit in class? You know, why is she non-verbal? Why does she use the augmentative device? I was, when I was a special education teacher, it was my first non-profit I ever started. It’s actually in the second book.

So the first book is about an individual with Down Syndrome that’s new to the class. Okay? The second book, is centered around, her name is Karlie. she happens to have cerebral palsy. She’s real in my life. and she’s the, the first, the reason for the first nonprofit I ever started and I was a school teacher and, there was, her name was Lauren Tucker, she’s in the book as well, and Lauren was in eighth grade.

I started the first, here, in my hometown. I started the first peer tutoring class. I was a middle school teacher, so I started the first peer tutoring official that people could use like eighth grade, seventh and eighth grade students could use as an elective. Instead of going to PE they could go to peer tutoring.

And so they were being buddies in my classroom and one of their names was Lauren Tucker. She was in my first peer tutoring class and she was with Karlie, and we were watching, uh, I did a lot of crazy things as a teacher. So, we were watching Oprah Winfrey, and we were watching, Team Hoyt. I don’t know if you’re familiar with Team Hoyt, but it was a father and son duo and they competed in they’re since retired, but they’ve competed in, he has cerebral palsy, and his dad pushed him in like 5Ks and triathlons and, Iron Men’s and all of these things. Well, Lauren Tucker was an eighth grade student in my class, and so she was watching with Karlie and she turned to me and she said, I wanna do this with Karlie. And Karlie was like pointing to the, she’s non-verbal and she was pointing to the screen and pointing to herself.

Okay, let’s do it. But what happened is Lauren, she asked me one, she stayed after class and she said, why does Karlie drool? And so, I told her why she drools. Like why she wears the handkerchief, why like, and the next day what I saw was, and I’m gonna try not to cry, but what the next, I tell the story all the time.

The next day I saw an eighth grade girl who saw Karlie start to drool. and took her own bare hand wiped the drool from Karlie’s mouth. And in that moment I realized that our youth, when they know better, when they know they’ll do better, right? So once she could, she understood about why she did, like, why she drooled or in that she can’t help that.

Then she was able to do what she needed to do to support her friend and that is magical to me. Actually, Lauren is still in Karlie’s life. It’s actually in the book, but so the children’s series in, in a long story. I think those monumental things that have happened in my life of just being the educator, being this to like, I don’t think intentionally kids want.

Now there are some bullies la I mean, let’s just be honest, but like intentionally trying to isolate or exclude, they just don’t know how. And I wanted to provide a book to start the conversation of how to include, how to embrace, how to educate in a way that a k a kid can understand it. And here’s the other cool part that the all the books do is there’s questions for the parents and teachers in the back of the book.

Nice.

That allows a parent, because I see so many times parents be like, oh, don’t stare. Oh, no, no, no, no. Like, don’t ask me that. I don’t know. You know, like we shut down cuz we don’t know. We’re awkward as you know. I, because we were never told, and maybe we’ve never been around somebody with a disability, and so parents don’t know the tools and so then, that kid is learning, oh, well they’re different than me.

Oh, like I shouldn’t be talking about them. Or, oh, I shouldn’t be staring. Right? So then they naturally subconsciously have this fear around it because they’re just, because their parents telling them not to stare or we don’t talk about it. We don’t, I don’t know the answer to that. So, the book allows that conversation to happen naturally, and gives you the tools to be able to say, what would you do or how would you do? And so like, hopefully that we’re learning from our kids because they’re, they’re resilient. They’re amazing. Kids are amazing. So yeah, it was some of the proceeds, 25% of the proceeds of every book sold goes back to my non-profit.

So yeah, I get to create  awareness and advocacy, and we’re gonna continue with the series. The next one will be about autism. The next one will be about something else. We’ve got two books out now and we’re rolling with that and trying to manage, but it’s, It also gives, like McKenzie, who happens to have Down Syndrome in the first book, it gave her the ability to go to the schools with me and sign the books and get all the attention. And same for Karlie. so yeah, it’s just been a really cool, that’s, that’s where the book came from. That’s why we do what we do.

Do you use their names in the books or are they a different name in the character?

It is them. And what we did with the illustrations,, one of the cool things is, is we actually sent the picture of like McKenzie to the illustrator and we worked with a, he’s not from here. And so, we worked with the illustrator of, of really trying to capture the true detail behind each individual. Right. And so that was even more trickier, you know, The wheelchair, like let’s say for Karlie, and this is so important because the wheelchair is part of Karlie, like a person that uses a wheelchair.

It’s their body, it’s part of them. And so, you know, when he first sketched, the wheelchair was like a, a, a transport wheelchair that you would see in a hospital. And I’m like, no, that’s not her wheelchair. Like, we need to get it right. You know? Like the headrest. And she has these flaps, like her name needs to be on it, so, because it it’s her, it’s her identity. So that was, yeah, they’re, they’re them in the book.

I was, I was wondering how you had gotten the illustrator to make sure it was represented right. I like that because a lot of times you do see just that, ambulatory type wheelchair that you see in the hospital when you, when you go into the door, the first, the front of a church or something if you’re going somewhere.

But that isn’t what most kids are using whenever it’s custom made for them. All right, so you talked about the, the back of the book. So, there’s questions for educators and for parents, both.

Mm-hmm. Yep.

And are they just like bringing up conversations?

Yeah, so they’re like, post questions, guided questions to kind of start that conversation with them.

And we also have lesson plans that we’ve designed around each of the books. Well, the lesson plans haven’t come out from the second book. but for the first book, we already have lesson plans and so, yeah, uh, we, we. There’s lesson plans, there’s worksheets.

Nice.

It’s just to start the conversation because again, when we know better, we do better.

And so we just want families, and this is really not, that’s the crazy part. This book is not a book for the special needs family. Right? It’s not. I mean, it can be, but it’s really for, to understand. It’s the perspective and I haven’t seen this a lot, but like our book is from the perspective of the neurotypical student individual that is trying to learn and understand, has the real questions of how to navigate, and shows him having conflicts like for example, in the second book.

And without giving away too much, but I mean, I’m not giving away anything but in the second book, it’s, they’re on, uh, a playground that’s actually mirrored after Owensboro, Kentucky’s playground that we’re known for. They’re on the playground and his friends from school come, and he’s playing with Karlie and they wanna go down the slide.

Well, obviously the, the playground is not wheelchair accessible. Karlie can’t go down the slide. So, he has the internal conflict of, how do I include her? That I really wanna go with my friends, but I don’t wanna hurt her feelings, so how do I include her? And so he works through that to figure out what that looks like to it makes kids hopefully think. There is another solution, there’s a way we can include, you just gotta be creative around that.

Right. so yeah, that, that’s, that’s the books

You had, you had talked about how, parents are telling kids, you know, not, not, not to stare not to ask questions. My daughter talks about that, that, if she has her cane out, she’ll notice that kids a lot of times are just kind of looking and she’ll see the parents pull them aside and she’s like, you know, just ask.

It’s. It’s not, it’s not rude to ask a question, what’s rude is to point and stare and to, to walk away without ever engaging. And, and so, and for her, because she has low vision, she’s able to see them walking away from her and she’s like, you know. Hi, I’m over here. I can, I, I can explain it all to you, but I actually, but I do think it’s, yeah, it was a, it’s, it’s, it’s a case where, you know, it’s, it’s, it’s a misguided way of treating it where they, they, they feel like they’re doing the right thing by not being rude, but it comes across the other way.

A hundred percent.

So I, I cut you off when you were saying something too.

Oh, no, I actually did a, uh, I think a, a column, I write a column, but like a column. It was either a column, a blog or a podcast episode.

I don’t know. They all blend together, but it was like, I welcome you to stare, like I will teach. This is what I want. If you’re gonna stare, or this is what I want you to do after you start to stare. And so, because I think that we naturally, if you’re talking about the disability community, we. We don’t want the stares to be a stare of judgment, but if you’re gonna stare, then let it make it count and this is what we want you to do with it.

Right? So, I kind of walk through that in some something I do,

I like the perspective of that. So you do have a title that you’re working on now, or it’s the next one that you will be working on autism.

We don’t have a title, obviously it’ll be Owen the Wonderer. We don’t have the title yet.

Okay. We have some concepts we’re throwing around, but autism’s gonna be our most biggest challenge just because there’s a wide spectrum and Yes. so we’re trying to be very creative in one book. How do we capture that? So, yeah, it ought, we’re up for the challenge, but we’re just gonna, we’re kind of riding the wave right now and celebrating, cuz we just came out with our second book and we’re working on another project right now, and I don’t know when this will air, but we’re announcing it March the first.  Okay. Of what that project will be, but it’ll be a lot for special needs mamas,

Oh, good. That’s good. So, we’ll, again, we’re linking your, your contact information. So those are listening March 1st, check. Yeah, check to see, see what it is,

And, where can our listeners purchase your books?

So they can go to piecesofme.org, which is my website, where they can access a lot of the things that I do there. So, it could be there. And if they follow me on Instagram, which is @piecesofmebyAmanda in the link, there’s a direct link that you can buy on there as well.

Okay, great. Great. All right, so that’s Pieces of Me by Amanda. Tell me about Puzzle Pieces.

Oh, Puzzle Pieces. So my elevator pitch for puzzle pieces, we are what started out 10 years ago to being, I, I just wanted a transitional place for adults and for kids after school of what my brother didn’t have after he graduated high school.

He really exhibited a lot of behaviors. He was missing what school brought to him. The social, like it was the only school was the only thing that was outside of my family. My family didn’t know what happened at school kind of. Right. It was his thing. And so, and then I went off to college and then it was just bad for my brother.

And so, I didn’t, I realized as being a middle school teacher, I start having these conversations with these parents of what does life look like after high school? And there wasn’t a lot of options. Jobs were limited at that time, you know, there wasn’t no options, it was jobs, you know, post-secondary education.

Now that’s getting a lot better with certificate programs within colleges. Like we’re in a different state even now than we were 10 years ago. So I just wanted a place, like a social place that people like my brother that had a variety of different, different disabilities. When they graduated, they had a place to like meet up and be kind of a community center and go out to lunch or go to bowling or do the things that they wanted to do, but also work towards skills.

So, because if they don’t work for ’em, they’ll lose it and it’s not generalized. So I just kind of wanted that, well that was 10 years ago. We started off with that 32 clients. It was just gonna be a social place. That was the goal, at seven staff and now 10 years later we serve, I think we’re up to 430 individuals that we support

Wow.

With disabilities. we have employment. We’ve placed 69 individuals with disabilities into the workforce. Yes, we have a huge division within that. We do long-term living care. We have several houses. We have an Owen Autism Center. It’s named after me unfortunately, but we, uh, support, our youngest is 18 months of age.

Our oldest, oldest is 21 in our Owen Autism Center. so we do a lot of ABA therapy. We do a lot of, summer school after school for those just with autism. We partner with the schools, we work with the teachers and the therapists to really just be the centerpiece, no pun intended with piece of Puzzle Pieces, but like the centerpiece that kind of really allows us to connect. Right?

Like school doesn’t just have to be school therapy does, it doesn’t have to be therapy, but like how do we group it together to be one big., to, to let it build on one another. So, and then yeah, then we have day training programs. I’m sure we have something else that I’m not thinking of, but, so yeah, we now operate, uh, it’s 4.6 million, our vision to expand.

Wow.

And this upcoming year, we will probably double that. I have over a hundred. So all of this, just because I had a dream of supporting and providing opportunities for those with disabilities has led into really, being a trailblazer here in my community of really looking at the unique services.

It doesn’t have to be, we should have a buffet, right? Like it shouldn’t, we’re not a fit for everybody. I’m not saying everybody with a disability in Owensboro comes to us, like we try to work ourself out of a job, but it should be a person with a disability just like. 20 different gyms out there probably in one hometown.Right?

Right.

Like there’s in, in a, a way, like in a 20 mile radius, there’s probably 20 gyms because every gym has something to offer that maybe builds their community or that they like about that environment versus another. We have the opportunity, have a lot of different buffet of opportunities to select people with disabilities do not.

So that’s what we try to do, is provide an opportunity of array of things of it. It’s not cookie cutter. We’re not providing a service that they have to come to us and fit into that service. Our service and our supports really fit into their lifestyle.

If our listeners have any questions after listening to this, what’s the best way for them to get in touch with you?

You can again, uh, track me on to our website, which is piecesofme.org. That’s like my personal platform, which would be directly towards me and all of the other things that I do. Now, there is, if you’re interested in learning more about Puzzle Pieces, we do have a website as well. It’s puzzle-pieces.org.

Maybe one day I do plan to franchise that and maybe it’ll be in a town near you.

Oh, cool.

So, we do have a Facebook page and an Instagram page for Puzzle Pieces, @puzzlepiecesky, and then the best platform for me that I typically stay on and, and, you know, build a community around, it’s Instagram and that is @piecesofmebyamanda and yeah, I’m always there. So.

Excellent. Excellent. And she, she has some, some really interesting stuff that, that she’s posting on it, on Instagram. So Amanda, thank you for taking some time to go through all these variety of questions here with us today.

I’ve really enjoyed getting to know you a little bit and hearing a lot about what you, what you’re doing here. So thank you for sharing your expertise with us.

Thank you for having me. This is awesome. I appreciate your time.

The post Episode #53: The Power of Inclusion: Insights from a Children’s Book Author and Non-Profit Founder appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

In this episode of the Water Prairie Chronicles podcast, host Tonya Wollum interviews Amanda Owen, founder of the nonprofit organization Puzzle Pieces. Amanda shares her personal journey of growing up as a sibling to a brother with a rare disability and how it has impacted her life. She talks about the emotional impact of having a sibling with a disability, the challenges and joys that come with it, and the importance of emotional intelligence in processing those feelings.

As a special education teacher, Amanda felt called to do more to support people with disabilities and founded Puzzle Pieces, a nonprofit organization that has been serving the community for almost 11 years. Through her own experiences and the work of Puzzle Pieces, Amanda has become a coach for parents and siblings of individuals with disabilities, helping them navigate the emotional and practical aspects of their situations.

In this candid and heartfelt conversation, Amanda shares her perspective on growing up as a sibling to a brother with a disability and the lessons she has learned along the way. Whether you are a parent, sibling, or friend of someone with a disability, this episode will provide valuable insights and inspiration on how to support and advocate for those with disabilities.

Join us next week for the rest of Tonya’s conversation with Amanda. She talks more about her experiences, the books she’s written to help support children with disabilities and spread awareness and acceptance, and her work with her non-profit, Puzzle Pieces.

Amanda loves to connect! Find her at:

          Website: piecesofme.org

          Podcast: https://podcasts.apple.com/us/podcast/pieces-of-me/id1547078857

          Facebook: https://www.facebook.com/piecesofmebyamanda

          Instagram: https://www.instagram.com/piecesofmebyamanda/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

“2 Truths and a Lie” Game:

      Can you guess which statements Amanda shared were her truths and which was her lie? Post your best guess in the comments below. We’ll post the correct answer on Instagram next week so be sure to check and see if you were right.

     1. Her brother was the 11th person in U.S. with his diagnosis.

     2. She is 2 episodes from 100th on podcast.

     3. She loves to cook and try new recipes.

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/

Amanda Owen is an accomplished children’s book author, blogger, podcaster, and nonprofit founder/director. She is a lifelong advocate for people with disabilities, inspired by her older brother Nick. Amanda is dedicated to empowering women to find their purpose and lead fulfilling lives, free from societal expectations. She and her husband, Justin, have two sons. Amanda’s inspiring message is to dream big, work hard, own your mistakes, and laugh often.

Welcome to the Water Prairie Chronicles. A podcast created to encourage and support parents of special needs children. I’m Tonya Wollum and I’m glad you’re here.

Tonya Wollum: Welcome back to Water Prairie. We appreciate you being here today! I have a special guest with me today. Her name is Amanda Owen. And Amanda, I came across on Instagram.

I was pretty impressed with what she’s doing. It seems like every time I log in, I see something else that she’s involved in. So, I’m looking forward to getting to know her better today and introducing her to you. But just briefly, Amanda’s gonna tell us a little bit about her brother Nick. And I’m gonna hold off on that a little bit and let her tell us more.

She lives in Kentucky, and she is the host of a podcast called Fuel Your Purpose. She created a nonprofit. She’s maybe tell us a little bit more about that in detail. But the nonprofit is called Puzzle Pieces and she’s the author of a series of children’s books called Owen the Wonderer. So, Amanda, thank you for coming on today and welcome to Water Prairie.

Amanda Owen: Yes, thank you for having me. I’m super excited.

So, if you could take just a minute and tell us a little more about that, that was like a really rough overview of who you are, but, but there’s a whole lot more behind all of that. So, tell us a little bit more about yourself.

Yeah. So, you know, I think that when people ask especially women about who they are, they tend to start to say like, I’m a mom, I’m a wife.

You know, I’m a nonprofit founder, I’m an author. I’m all of these things, but yet I forget to say like, I’m Amanda. Right? And so that’s really the passion behind the platform, Pieces of me by Amanda is because I have so many different pieces and layers to me, and most people knew me as Nick’s sister, Amanda, and I think that that’s where kind of my journey started.

I’m a sibling to a brother with a very rare disability. and he’s older than I am, and I grew up in a very small town. I played softball. I used to love coaching softball. I had so many passions that I did, and I became a special education teacher. Started a family. Um, I have two boys. I love being a boy mom, and I’ve been married for, 16, 15 years.

Oh my gosh. I don’t even know how long I’ve been married. A long time. A long time. Um, so yeah, I, you know, I taught special education for six years. I knew that was gonna be the passion and the purpose in my life. And I, six years into it, I decided to start a nonprofit organization that is called Puzzle Pieces to support people with disabilities.

And since then, that was 10, almost 11 years ago now. And, wow, life has taken different … God just has led me on different paths to live out of purpose to honor His gifts that He has given me. So I know that that’s a loaded a lot of bio. Like when I send my bio out, I’m almost embarrassed cause I’m like, oh wait, can a person really do all of these things?

And like, I’m trying to figure out how to do all of those things. And you know, they’re not check boxes for me. It’s just honestly going through the doors in which God opens and I’m just very blessed to be able to, to live in life on purpose and figure out my purpose early in life, and everything’s aligned to that.

So yeah, that’s a little bit about me.

That’s great. That’s great. Those that are listening, in the show notes I’ll be putting links to all the things that she’s involved with. Because you’re gonna wanna dig in more and see more of what she’s doing. But we’re gonna talk about some of the specific pieces of what she’s doing during this meeting today.

As we get started, I’ve been asking this season for each of my guests to share three facts about themselves, two of them being true and one being a lie. So, Amanda, do you have your “2 Truths and a Lie” ready to share with us?

I do.

Okay. All right. Thank you for sharing that. Those that are listening, go to the show notes here and leave a comment. If you’re on YouTube, go to Instagram, go to Twitter. Post what you think the truths and the lie are, and a week after we release this, we’ll be posting the answer on Instagram and Twitter, so you’ll be able to see if you’re correct or not. If you’re listening to this later, you can still guess and then check your answer later.

So I wanted to get into, when I invited Amanda to come on to the podcast, I asked you about two different topics that I’d like to talk about. And um, the first one that I wanna talk about is specifically about being a sibling of someone with special needs.

You talked about Nick and having an older brother, so you’ve grown up in that environment yourself, but you’re also working with others who are in that same situation. So I thought you’d be the perfect person to bring in a little more information on this. Before we go into the questions themselves, is there anything that you’d like to share about just your personal experience with growing up as a sibling?

And then we can get into some of those specific questions that I had.

Yeah, I mean, honestly, I coach a lot of mamas now on the perspective or, uh, from the perspective of a sibling, because I think that I didn’t know then what I do know now as an adult, and I don’t think that I really understood the emotional impact that having and growing up with a brother with a disability had on my life.

Whether that was good or bad, it made me who I am and I didn’t realize or was able to put language or understanding to those emotions or to the  significance of that impact until I was an adult processing that, and I don’t think it could have happened any sooner because I say this all the time to families I coach, is that children, they’ve had when a mama gets the diagnosis that their child has a disability, they’re, I mean, I would think they’re at least 18, 16 or older, right?

So they’re a little bit older in their life, and so their emotional intelligence to process what’s happening, they’ve had the entire pregnancy to process that. Then when they’re born, they’re learning through that as they’re navigating the diagnosis. Learning what the ends and the outs and, and navigating societies you know, what they think about it and, and how to advocate for that in school.

And then they might have another child with or without a disability. And so what happens when a child is processing that their sibling, they don’t have the emotional intelligence yet they, it hasn’t developed yet to understand maybe they don’t know life any, but probably some of the same emotions that a parent would go through, the sibling is going through, but they don’t, they don’t know what to do with those feelings, and they definitely do not know how to share those very well.

I didn’t know that until I was older. Right? And so I think that, and I am the woman I am today. I would not, you know, a lot of people, I get asked some of the questions like, do I ever resent my mom or my dad? You know, my dad doesn’t get hardly any credit. Um, but my parents are still together. Um, but like, do I resent them?

You know, what did they do better than most parents of why I turned out the way that I did? You know, like, or did I hate my brother growing up? Like all of these things I get asked on a daily, and really, I don’t know, these were the cards that were dealt. Like, I don’t know, if it wasn’t this, it was gonna be something else, right?

And so, right. I don’t know any different, I just know that the way my life was, whether it was through the sacrifices, whether it was through the joy, whether it was through the hard or the great, it made me the woman that I am today. And so yeah, I think that there’s so many, I don’t like to call it trauma, and I think some people would classify some of the things I went through as trauma as a child, but it wasn’t trauma to me. I didn’t know it would to be trauma. It was experiences that shaped me to, to be not just who I am, but how I think and how I wanna show up and the mom that I am. Um, so yeah, I think that I’ve learned a lot from that and now I’m able to have a platform to be able to share that and, and cast light to that because siblings as much as being a parent to a child with a disability is very isolating.

Sometimes being the sibling can be very isolating and we don’t have the support like a parent would, and so we just, I don’t know that I spend all my time there. Um, but really that’s not even my passion. It just happened. It’s God’s purpose for me to connect with other siblings because I’m gonna be a future caretaker for my brother, and I know that.

So, yeah, I don’t know if you, that’s a loaded answer. Uh, but that’s kind of …

No, it was, it was good.

Well, I think, I think you bring out an important part that, you know, our kids who were growing up as typically developing children who have a sibling with a special need or a disability, they don’t know life any differently than what they know.

And so, and I think that’s kind of what you’re saying there, your life was what it was. You don’t have a comparison with that. You may have had a girlfriend that you spent time with and saw their family was different, but every family’s different. So that may not have made a difference there either.

My kids joked, they were, some of the first couple of interviews that I did, we were kind of practicing on the family first. Before we had guests offsite. My son talked about being the sibling at first because my daughter was older. She’s visually impaired, so hers was cut and dry from day one.

We knew there was something going on, so he was always the one who kind of took the backseat for a while until his disability started creeping up as he got older. And so he joked about how she was more special than he was because we knew things before with her, but I do remember there were stages where they would kind of take a backseat for each other just outta necessity because they may have had some needs, but the other one definitely needed more help at that moment in time. And as a parent, I appreciated the fact that they were able to do that because I don’t know if I could have split myself to focus both directions at the same time.

Right, right.

I give our parents with multiple children with multiple needs, a lot of credit, cuz it does take a lot of energy to figure out who needs what, where the doctors are, who the specialists are, all of those things. Especially when they’re little and you’re still trying to put all the pieces together for each of them.

Absolutely.

So the reason I wanted to talk to you really about this topic is because you are a sibling. You openly talk about being that sibling and you also have more knowledge, I think than most do as far as what’s gonna be involved with being that adult sibling. And as you said, you know, one day you will be the caretaker.

So that’s why I wanted to talk a little bit more specifically with you about this cuz I felt like you’d be able to bring to us a little more information than some of my other guests that I’ve spoken with. One of the questions I wanted to ask you was how can we, as a sibling, thinking more of that older child, younger adult, maybe that age range, how can siblings be involved in the care of their brother or sister and decision making without stepping on their parents or the legal guardians at that?

Like before they’re officially in that role of being a guardian or a caretaker, how can they still be involved knowing that one day that is gonna be theirs?

Well, I think I can answer this in two different ways. Um, I’m always, cuz I coach it in two different ways. I just spoke to a little girl, actually. I went to a school and spoke to a sibling who is trying to be mom. Um, and she’s in fourth grade and she is trying, and she wants to help. That’s primarily what happens is we wanna help because we see the struggle. We see the struggle more so that we’re not trying to help our sibling, we’re trying to almost help our parents because we see them not struggle. And I don’t wanna use that term loosely, but we see sometimes what they have to navigate. And we just want to be able to offer help because maybe if we do help, if we do step in, then maybe they’ll be able to see us. Or maybe they’ll think that, you know, I, that’s how I get to spend time with my mom and my dad.

And so I navigate a lot of kids, teenage, middle schoolers. You don’t have to be that now. And I think that sometimes we overly worry about the future. So, we’re almost too much involved. And so, we forget about how to be the sister or the brother. Um, and ultimately that’s what we need to be. We need to first be able to figure out how that relationship can just be not a caretaker.

I’m not thinking like a caretaker. How do I just learn how to play? Be a sister. Like I used to remember thinking about, I was like in second grade, and I was poking fun of my brother about something stupid. I mean, I think and, and somebody, one of my friends was like, can you poke fun of him? I’m like, why not?

Like, he’s my brother. And they’re like, it, I think we forget that there still has to be a relationship there. And I see so many times parents either putting too much pressure for them to show up to be that perfect sibling. Right or not. You can’t poke fun of your brother, you know, he has a disability.

I’m like, I’m not even poking fun of him about his disability. Right, you know, like I’ll never forget when I was even younger too. I strapped my brother into this, his therapy tricycle, bicycle, I strapped him. It’s a wonder I didn’t kill him. I strapped him in and thought it was fun to be able, he pushed me down the hill, like pushed me on my bicycle. So, I was gonna push him on his bicycle, not thinking that thing was gonna tip over and he was gonna fall. Cuz he doesn’t have the ability to like steer it right now. Right? We were just being. Right? And those are the memories that stand out to me the most, even as an adult, is when we were just allowed to be kids and my mom wasn’t over there saying, you can’t do that with your brother.

Don’t do that. Like, he’s too gentle. Like, you gotta be right. Use gentle hands. I mean, there was sometimes I probably needed to be that reminded, but I’m just saying, and I know that I’m not really answering the question directly, however, indirectly I think siblings need to figure out how to be a sibling first and how to cultivate that relationship because it’s in those moments that will make them better caretakers later.

Because if we’re not a sibling first and we don’t understand how to like build trust in just a relationship of love and understanding disability or not. Then even as we get older either we’re not gonna know how to caretake because we never, it wasn’t built on anything or we’re not gonna have the desire to care.

So, I think that’s first and foremost. The second part to that is I think that we can’t get so involved. Sometimes caretaking comes naturally. I will say what my parents have not done a very good job of that I’m very open about to all other parents is that, and I try not to get emotional when I say this, but like my parents didn’t have conversations.

They still, to this day, don’t have conversations with me about what will happen when, when they die and what do I need to know about my brother. Like I feel like I know like. Uh, most things because I’ve seen it all my life, but now I’m not at home, right? And so my mom shares and, and I’m there. But like, am I, do I really know?

Do I really know what his favorite way is to do his morning routine? Do I really know that right? Or am I gonna assume that? Um, and we don’t have conversations about that because it’s too hard. Parents feel as though they’re in. and if I don’t have the answer, then I’m just gonna pretend like it’s never gonna happen.

Like my mom did not want to think about me being my brother’s caretaker ever because that was too hard for her. Yeah. She just wants to live forever and, but yet that’s not preparing me for the role that I need to play to make sure that transition is smooth for my brother, not for me, but for him, and so I really do coach of like, when the timing is right, you should know, but I think parents need to start journaling and, and leaving a guidebook if you can’t verbalize it.

I like that journal to leave the book, the playbook. Because I would much rather have a playbook, and I’m not just talking about the doc, here’s who you go to here, he goes to the doctor. This is his dentist. But that way we can still just focus on being the memories of a sibling and not, so it being daunting and drowning of, shoot, I’m gonna have to be their future caretaker and can I do this?

It’s not a matter of can I. Right? It’s just if I have the willingness. You know, do I have the, you know, what do I, what’s the foundation? I have to build on that? I hope that I was able to explain it.

No, I like that idea. I think that’s, I love the idea of parents just journaling what’s happening because life changes, and as the sibling is growing up as well their rate of growth, maybe a different rate of growth than yours, but they are still making changes and they’re maybe able to take on more of their own care, things like that.

But as all of us age as well, that might also reverse later as they’re getting older. So having someone that’s documenting those changes that are happening and how things are being done would help whether it’s the sibling coming in or someone else as well, knowing what’s happening. Well then, I really like that.

Well, the other thing to that, I think sometimes what I don’t know that I wish I did and luckily my mom, we don’t have intentional conversations about it, but I’ve just seen her over the years and other parents like, let’s just be real. This is not about just what my parent did. I coach and I support over 400 people with disabilities.

So like I’m, I sit back and call all their parents and taking care of them. Everybody wants me to be the future guardian and I just can’t do that. And I’m a caretaker right now to an adult with autism who lives with me. So I’m getting a play by play even now. So I’m actually having to journal cause I know he’s not gonna live with me forever.

So like I’m journaling even though I’ve known how to advocate. And that’s the biggest piece that you can’t teach. And there is no so, you know, whether that’s advocating for healthcare, like it’s not just a matter of leaving the doctor, the dentist in which they go to, but just know that these are the struggles that I’ve had to fight for with going to the dentist and this is how I overcame them.

Like, this is what I wish you would know that I knew later. Right? Because that, those are the things that it shouldn’t, we don’t want the individual with a disability to have to restart their life in just the hardest transition that they’ll ever encounter. Right. That’s only gonna be through the person leaving, and we just can’t assume that we’re always gonna be here.

Right? Well, depending on who this adult is that we’re talking about, they may have, you know, one comfort piece that made the difference in whether those transitions could happen or maybe they need a transition time to get ready for those things. Um, so a lot of our listeners, I mean, the focus of, of the podcast is for parents of young children, and I know this is kind of a little bit off from where they’re thinking right now. But at the same time, some of those lessons that they’re learning right now with that young child will still be the same situation with that older child with it. So, I think it is …

It's never too soon to start preparing!
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It’s never too, like, it’s never too soon to start preparing.

And I think because no matter how old their loved one is with a disability, their child, their fears are already there about long-term living. They’re already trying to figure out how they outlast their child. Um, I know that because I’m surrounded by families, like I said. So, the fear happens the day one, that they realize that they’re raising a child with, with different needs.

And so that fear can only be silenced or lessened when we have a plan in place. And if that means that you can’t verbalize that out loud, to a future caretaker. You don’t know who that future caretaker is. Like I get that a lot. Like, well, I don’t, they’re an only child or my other children do not wanna be their caretakers.

So even if you don’t know, start journaling now. Right? Like start leaving that because that is what’s going to help your child and give you some type of controlling peace around the fear. Because the fear is there no matter how old they are. Yeah.

Well these are important conversations. I think they are hard to have. No different than having that same conversation with their parents as they’re getting older too.

We’re gonna have, part of life is having these types of conversations.

Those that are listening, I sent Amanda a list of questions that I kind of wanted to run through, but as we talk, sometimes I change what I’m doing here.

Yeah. I’m an open book, so you can ask me anything.

Well, it’s like, I’d love to just, just continue pulling it all out of you here. So, as we’re talking about, just thinking of that older sibling there. Um, you know, not necessarily at the age that you and Nick are right now, even, it might even be, you know, our teenage siblings that are there.

Um, but how can a sibling help support and encourage independence for their sibling? Um, like are there any stories that you can think of from when? Because, because Nick is how much older than you.

He’s three years older than I am.

Three years older than you are, so he would’ve been in high school age or similar.

Mm. He’s 41 and I’m almost being 39. ,

uh oh. She… You’re just a child.

I’m still having a hard time. Yeah. I’m having a hard time with that,

But just thinking back, like when you were in high school, maybe, or even your early twenties, were there ways that you were able to help him have independence and all without maybe doing everything for him?

Is that, am I even making sense with that question?

Yeah. No. Yes. Um, I think that the unique thing about siblings is we have a different approach than our parents. And so, I do believe we need to lean into that. And luckily, my parents always allowed me the freedom to be able to be not only the sister, but to, to try things, to like teach to, to guide.

I knew when I was five years old, I told my mom I wanted to be a special education teacher so I could teach students like my brother because I saw what he didn’t have. So I was always trial and airing anything with my like, like if he I’ll never forget we were, I was making pizza and he wanted to help and I really kind of sometimes hated the idea of him helping me. So like I always be like, no, you’re not gonna help me, but you can make your own . You know, like I just, I was very, I think that happened naturally. Um, it was never forced and I know that that’s really hard sometimes, especially when we talk about autism. And, and my brother had a very unique, uh, disability and, and his cognitive and in how he approached things are definitely different. So this is not all encompassing, but you can take nuggets from it because I do work with a lot of siblings that struggle more with that parallel coaching or the parallel modeling in reference to someone that may have you know, level three, uh, or towards level one autism.

And so I think that it does maybe look a little bit different. However, modeling is the best thing that siblings can do, and so, of just, I think we all society as a whole. Um, and probably this is what I do most in advocacy is um, just kinda like the pizza thing. My mom would not let him do that. I know she wouldn’t because he would make a mess. It would probably come out raw and you know, like the toppings would be halfway on or halfway off. Who knows? But I’m using that as an example is because sometimes we want those with intellectual disabilities, not to fail. And that’s the one approach that I didn’t do as a sibling and I still don’t do, even as a provider and a teacher, is I’m setting them up not to fail, but all of us, every human out there, we learn through sometimes our experiences of not getting it right. And so I was given the freedom and that’s what I really would challenge. Let’s not set them up for, and let’s mom and dad to kind of like, whoop, like, uh, you know, hold, bite their tongue to see what happens, to see what happens when that relationship comes naturally and not forcing it.

And so what if they were to do it a little bit different than you do, or challenge them in a different way? See where it goes. Let them fall. Let them fail. Um, you can undo anything. And that there’s so much time in today’s society, like we have so much time to undo what we think is harming, I mean, certain things, right?

But when it’s talking about like teaching and modeling and sometimes parallel model is the best way to do life. And so those are some of those examples. I’m not trying to promote, I didn’t ever look at it as a promoting independence. I never looked at a strategy like we talk as parents because we’re so conditioned to a kid, don’t understand that.

Don’t teach them how to have a certain strategy of a first and then don’t tell ’em. That’s a strategy. Tell ’em like they probably work best if you say, or they learn best or you know, like if you say first this, then this. Let them naturally figure that out. Like, and, and just give them a little bit and see where it takes them.

Because most of the time siblings can motivate their loved one way different than anybody else can. Um, but also don’t put that pressure. So I’m gonna say that like, I’ll never forget when my brother and I were in the same elementary because we were close in age. Um, and again, remember this is before ADA was a law, right?

Um, he went through schooling that were very backwards thinking. And so, I don’t remember how many times, but it became a major issue is when my mom started to advocate to get Nick put into a school that was more equipped to supporting Nick’s needs because the teachers did not know how to handle him or support him. And so guess who was getting pulled outta class so that way I could support him. It was me. I was getting pulled and teachers would support me to figure out, do you know, I don’t know half of like how to go through speech. Um, I don’t know half of how I even been able to make it now because I couldn’t learn the basic foundations of my elementary school that teaches you the foundation of academics, only because my life was being pulled to help my brother through school.

And so I say that to say we shouldn’t want that pressure on those that, the sibling as well, so that they can figure out how to blossom in their own ways. And my mom, what my mom also did is she did not want to see me struggle. Um, and she wanted me to be very smart because she pushed through me and my parents pushed through me what they couldn’t get from my brother.

And so they did a lot of my homework. They, they didn’t wanna see me struggle. Um, so they, so that again, it has impacted me as an adult. Like that’s why I say I can’t spell or do phonics because what happened in my elementary, yes. Um, and I can laugh about that now, but I wouldn’t have known that when it was happening.

I thought it was cool I was getting outta class, but it did get, like, it did impact me obviously.

I think it turned out all right.

Obviously it did, and that’s what I’m saying, like it made me to be the person I am. And so I wouldn’t trade any of it for the world, no matter all the failures, not matter, all the wins, uh, that I had, my family had, Nick had.

"When you know one person with a disability, you literally know one person."- Amanda Owen
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All of it got me to this point, and through my advocacy, through how I show up differently for every person. When you know one person with a disability, you literally know one person. And so, yeah. I realized that when I became a teacher, like not everybody’s like my brother, and I was like, oh, whoa.

Like I’m in for a world of wakening, right? Um, so yeah,

I mean, you, you can have two kids with the same level three diagnosis with autism and they’re not anywhere near each other. So yeah, you’re right. And depending on the day of the week, sometimes it can make a difference on, on how much support is needed there.

So, in Interesting. Can you talk much about, like, as parents are thinking about their older kids as like as they’re thinking down the road, are there anything specific that they need to be thinking about with legal and financial affairs that they need to do? Um, guardianships wills trust.

Like, can you give any advice on who they should talk to, how do they …

A hundred percent. This is what I do all day.

Oh, do you really ?

Yeah. Um, well, it’s just the nature. Within my nonprofit, I’ve learned a lot especially with long-term. So it’s not even applies to my brother, my brother’s unique to that situation only because what I know, it has nothing to do with what I’ve experienced as a sibling.

Um, I’ve been able to apply that. But you know, long-term care for those with disabilities is a, is a national crisis. Um, no matter. And we are really, and especially where I live in the state of Kentucky, it is, it’s more so of a crisis than anything else. There are not enough resources you know, and back and I don’t know how much this applies to all states.

"Long-term care for those with disabilities is a national crisis"- Amanda Owen
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And I’m trying to learn that now because I am an advocate across the United States. But you know, in the state of Kentucky, there for a while if you had a certain waiver program. Um, and they pay like Medicaid waiver, and they paid for services or residential. An individual couldn’t have more than $2,000 to their name.

Which financially impacts them to be able you, if you died and you left ha like not knowing any better and you left half of your money, uh, half of your house, half the land. To, to all of your kids. You know, like if you divided it up, that money, like they would lose some of their resources in their waiver because that’s assets that they can’t have.

So I definitely think it’s, it’s I will also say too, that I recommend, and I’m not gonna say I’m an expert in any of this, but there are certain life insurance policies that a family can get. That actually when something happens that will fund a trust fund. Um, for the long-term care of their individual, for their loved one.

And so there are different, like in the state of Kentucky, we have an ABLEs Act. I don’t know how that applies across, but there are certain different ABLEs Acts. But you definitely, there’s a special needs trust.

Right now what families need to look at is even no matter how young their child is, is starting a special needs fund. And even if you put $50 in it a week or, or a month or however you do, just as much as you prepare for a retirement, and you prepare like a will and all of those things. Definitely I think a special needs trust.

I look at it as like a savings account, like a restricted savings account, whereas some of these ABLEs accounts and say all these other different scenarios. Those are more like a retirement plan. They’re very restricted to maybe how they pull money out. So, you’re definitely start having those conversations now in guardianship.

You know, if you said that there’s a lot of younger mamas on here and their child’s young. I think the hardest part is when they, when an individual turns 18, you know, you have to go if … they automatically become their own guardian. And so I think that’s probably one of the most challenging. For some families, either A, they didn’t know that and B, that they didn’t know that they needed to get a lawyer to be involved, to go through the courts, to be able to petition, to maintain as their legal guardian after they turn 18.

That’s important for some families to know. Um, especially it does have some … families don’t want to think that they can’t take care of their money or they can’t take care of this, or they, they don’t wanna say that out loud. Um, and it’s very hard to go from through a court to basically declare incompetency.

Um, you have to come face to face with some things. And so that’s very hard for a family and I don’t wanna take that. And it doesn’t mean that all people with disabilities and uh, or an intellectual disability needs to not be their guardian. I support so many of them that are their own guardians with certain supports, right?

It’s not a matter of taking care, like taking away their rights. Just because you become the guardian, you do have a set of, it does protect some boundaries. Um, you know, like for example, I’ll give you an example for my brother. My brother was not his own. If my parents were not his guardian, when he used my grandmother’s credit card to purchase like 30 videos of Girls Gone Wild and done a lot of other things, you know, like he, he would’ve maybe had some charges being brought to him or some things that been, that were happening that wouldn’t have necessarily held up because he would not have been able to advocate for himself as an his own guardian. Right? And sometimes they only will talk to the person that’s the guardian.

And so those are the things that circumstances, you’ll, you never might not think that you’re in , but I’m in ’em all day long all the time. Not necessarily with my brother, but with a lot of other things. Um, and so, yeah, I’m not saying they strip out a strip away their rights. Um, individuals with disabilities still have the right to vote, open their mail, like all these things still happen even though they’re not their guardian.

Um, but you do need to understand as they start to approach 18 of where you stand on that and what needs to, and there’s part guardianship, like you can just be over money and, uh, you know, process through SSI money and things like that. You, it doesn’t have to be full incompetency in all areas. Um, they could just be the payee and the structural within their, their money that they receive.

Um, so yeah, and, and just so that you know, if you don’t have guardianship, if you go and apply for guardianship and you are the legal guardian to your adult child with a disability and you don’t have that set up in their will in your living will as to what, like who you’re leaving guardianship to and you haven’t declared that within your will and no, like maybe they don’t have a sibling or even right now if I wasn’t declared in their will as the guardianship and that was gonna transition over.

If something, if my parents were to die in a car accident tomorrow, it would be held up. He would have to go to state guardianship, and it would be held up for a while. If it’s not declared in the will, I would have to fight a lot of things. I shouldn’t have to be fighting if those are not really spelled out to understand what that’s, so, that’s why it’s so important to have that spelled out into a will as well.

Sorry, it’s a loaded question, but Yeah.

So in, in the event that were to happen where no one’s there, how long. So they would automatically go to state guardianship. How long would they stay in that situation if there is no one to be found? Or is that where it would stay forever?

If there’s no one to be found?

That was, that’s where it’ll stay forever. State guardianship. Okay. They’ll, if there’s dis, if, if when they were 18 or whenever it happened. If, if they, if they’re deemed as incompetent and um, a guardian. then state guardianship will be applied to that to take care of and make the decisions based on their needs and care.

Okay, so that’s not what you want to have, but in so an important time. So, at 18 is when that would have to happen. How soon before their 18th birthday should a parent start looking at starting the process?

I would say probably like six months before they’re 18th. Okay. Now, if you would ask me this during Covid, I would’ve said probably two years, that knew covid was gonna happen.

I would’ve prepared for them a lot sooner, but that delayed a lot of scenarios in our world. So yeah, I would say probably six months of just making sure that you reach out to a lawyer and making, you know, there’s expense involved. And unfortunately, you just have to do that or yeah, it complicates the things.

It’s really just to protect your loved one.

And I know you’re not a financial advisor or an attorney that’s coming into this, but you’ve had some experience, so we’re just pulling from this. So this is not professional advice in any way. Yes. From, from, from either of us here, , but the so you, so you would need an attorney that, that you’re working with there.

The financial piece too as well. Like if they went to a financial advisor, like, I highly recommend for you to do homework in reference to.

"Not every insurance agency that's gonna sell you a life insurance policy or an attorney or a financial advisor, is equipped to giving you knowledge as their expertise in reference to special needs trust or what you should do with…
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Like how to help you to manage that. So, there’s a ton out there. Luckily in my hometown, I have several because somehow some shape or form somebody was impacted by a disability and so they were passionate within that. Um, and so I’ve connected and there’s a lot that have reached out to me, so they’re there.

"Sometimes parents just wait too late to do the homework, and it's already too late."- Amanda Owen
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You just have to make sure that you’re plugging in. I think sometimes parents just wait too late to do the homework, and it’s already too late. Like, I’m working with a family right now and they’re in their eighties and they’re just now having this conversation. I’m like, whoa. Like, what happened when you were in your forties?

Why are we not having this conversation? So, right. I’ve just been pulled in a lot of bad situations probably in the last eight years, you know, like in the last eight years of navigating some of this long-term care that families just, they don’t know their options and they’re not, there’s information that’s out there, they’re just, they don’t know they need to know. So, I say right, even if your, if your kiddo’s three years old, right now, it’s not gonna hurt you to understand and, and kind of have like that vision map of what you kind of need to do when you do it. Because so many families are in survival mode. Like, if I can just make it till tomorrow, I’m good.

"So many families are in survival mode. Like, 'if I can just make it till tomorrow, I'm good.'"- Amanda Owen
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If I just make it, we tend to think of it as either milestones, as ages or, or seasons of life. Like we’re just making it to the next milestone, to the next grade, to the next age, and I think that is important to get through. And I’m not saying that you have to like have it all figured out, but just get yourself in the know, don’t, don’t not be in the know and then wait too late and wish that you had.

We had talked about the ABLE accounts, and those funds are specific in what they can be spent on, but um, but those, I believe could be used for the, to help pay for those fees that you need to be able to get that put into place.

Um, and so, and we did, for those that are not familiar with the ABLE accounts, we did do a segment on this a few weeks back. So look back through and you’ll be able to see how to connect to the, the nationwide account through there. We just specifically talked about the North Carolina ABLE Accounts, but it doesn’t matter which state you’re in there if your state doesn’t have one, you can plug into one for another state.

So, it’s a federal program.

And just another nugget of advice if you are. spell out in your will as well of who is the, the executive estate over the ABLEs account. Like who’s gonna be the, if it’s not gonna be the guardian, who’s gonna have that? Uh, we just had two situations where an individual went and, and lived with a provider.

So like they were in long term, like a group home, living with a provider. That’s what we do as well. And the Guardian assigned over the provider to manage the ABLE account, like to manage their account? Well, that provider filed bankruptcy. Like they’re a business, they filed bankruptcy, but they just assume they’ll be here forever.

Right? And so, they have not had access to their money in almost two years. Well, since Covid, cuz the bankruptcy happened during Covid. So I would just be make sure that you know that ABLEs account and who you leave it to and like who, just because they might be in a home or a situation, still have someone on the outside.

And I’m saying that as a provider cuz I’m a payee to a lot of people. Um, don’t leave that to our, as a responsibility to us because you never know what the future may hold for them. Right?

Good, good, good information here. We were talking about Nick earlier, and your mom had had to advocate for some of his needs.

Have you been in a situation where you felt like you needed to advocate for him as well?

Not Nick. Not yet. My mom won’t let me. Um, my mom and I are exactly alike. Um, I used to hate that, but now I love that. Um, there’s never been a point. Now my mom will call me and ask me now that I’m in the position I am. Um, she hates that.

Um, so she doesn’t wanna ask for help. We have this thing where we don’t like to ask for help. But I haven’t had to do that for my brother, but there has been a lot of advocacy as you know, like, uh, and I know that we’re gonna talk about this later, but you know, within my nonprofit, a lot of what we do is, is some of it is long-term care, and I just never realized, I think it opened my eyes to some of the exposure of what my mom have had to advocate throughout the years. Mm-hmm. and you know, I’ve, I’ve been with clients until the day that they died and spoke at their funeral. Like, I think that I never knew how important or how hard it was to advocate in sometimes the healthcare system of healthcare equity.

So those are the situations that I’m spending a lot of time advocating for. There was a situation that I just advocated. Um, we were called into a situation where in, in our community, a neighbor, they all signed a petition that this certain individual shouldn’t live in their neighborhood because she was walking down the street and, you know, knocking on the door and wanting to come in, and they just don’t feel safe.

I’m like, well, don’t let her in like, she has the right to be able to live on the same street as you do, but don’t let, don’t make me be the bad guy. You know, I think that’s what I try to do in advocacy and education is sometimes people in society are so, to like to set the boundaries to teach in the moment.

You can’t allow a provider or an education teacher or the parent to be all of that. They need help with being in the moment, like right now I’m busy. I’m so sorry, come back. You know, on Wednesdays I will only allow that’s all that the redirection that this individual needed. But instead, they just wanted it completely gone away with.

I’m like, she has the right to live on the street. So I guess it’s those advocacies, like I’ve never had to do that for my. , but I have had to advocate a lot for like rights in the workplace mainly in healthcare. And that’s been the most surprising thing and some advocacy around you know, just because they’re incompetent, you know, they’ve been, you know, they are, their guardian has done incompetency, right?

And so, I’ve helped navigate siblings. Um, and so there was a situation I. with some siblings that the individual did not want to have a feeding tube. Um, and the siblings wanted them to, and so they couldn’t under he, they chose not to tell him. Um, and he just woke up and he had a feeding tube. And even though he didn’t have the it wasn’t his choice to be made, uh, legally, um, they didn’t consider what he wanted and so trying to advocate for him while also educating the siblings and trying to be very, like, those are the situations that I’m in now. I’m just like, he has a right to be able, how do we let him live? Like how do we listen and honor what he wants? But then they were like, he doesn’t really understand the consequences to that.

I’m like, how do we know that? Like, can we talk to him a little bit longer about that? So those are the advocacy that I kind of tend to.  lots of advocacy within my state as well of just employment first model and, and a lot of those different things.

I think even taking from that, those that are listening that may be adults now who have a sibling you know, hearing to have that conversation.

Don’t, don’t assume that what you know is the only way. It might be that there is a say that your sibling has to whatever the situation is that’s there. Um, and, and I know a lot of times those choices, like you were talking about with these siblings, it’s because they think that what they know is what’s best and mm-hmm.

and it may be health-wise, it is best, but to give the person that’s affecting a say in the matter, at least, whether it can be honored or not, at least to hear, hear and make sure that they, that they’ve had their, their input there too. Um, you know, I just think about respecting people for who they are …

Mm-hmm.

I will say they learned that advocacy from the parents and seeing what they do. So, their parent was no longer here. Right. But they saw that the mama took care of everything. Like that was just how it was. So, they were only doing what they knew and they thought was best based on what was modeled for them.

So I say how important it is of how you show up for advocacy of don’t … I’ve learned a lot of that as a kid of being in a therapy session where maybe I shouldn’t have been, but, and maybe I shouldn’t have been. Like I wasn’t forced ever. But what I’m saying is, if you want, don’t force it to happen. But it’s just a natural way.

Like my brother had to come to my softball game, so I had to go to support him in Special Olympics or support my mom, never. Made an excuse of like, uh, this is probably not gonna pertain to you, or, Ooh, you probably shouldn’t go to IEP meeting. I’ve seen her throw down in an IEP meeting, and I remember now as a teacher, I’m like, what?

Why was she having to fight so hard in an IEP meeting? What did that teacher not understand? So again, what I saw as a kid allowed me sometimes, I don’t think parents want to expose the other children. Or don’t think they’re ready or don’t want to burden them, but really that’s how we learn for the future of that advocacy.

Um, I’m not saying push it on it or make it a requirement. There’s, there’s a far stretch, but like, say in the middle, right? Like, let it happen naturally, but it, it really does need to happen. Don’t feel like that you’re gonna.  your child’s gonna be resentful or resent you for forcing them to go to an IEP meeting once a year,  right, right.

You know, and, and, and I wasn’t given an iPad, like I wish I had an iPad back or a phone to play on . I wasn’t given that. I was probably given a coloring book Right. Or a crossword puzzle too. and I really wasn’t listening. I wasn’t even pertaining, but obviously I do remember so much that I didn’t realize I remembered, and it impacted me as an adult.

Um, so just don’t exclude them from all the angles that you think that they’re just not ready because they need to be ready.

Right. Right. Is there any major advice that you would give that we haven’t touched on here?

No. I don’t, I just think, don’t overcomplicate it. Just live life. Um, I think so many times.

Um, I see families exclude, but not intentionally, just kinda like what I mentioned, but like some of the times that I talk with fam uh, siblings the most in, in a protected way. Um, I do a lot of SI talks, but it’s really when they just feel like they are living on the outside of their family, maybe their parent.

Um, and I don’t say that this shouldn’t happen, so please understand. I didn’t grow up, and then maybe I would think differently. I didn’t grow up when there was social media, so like my mom couldn’t have a Nick story page. Right. Right. And it was all about Nick. Right. So, I think when we’re talking about advocacy and we’re talking about sharing our story, I think that’s so important. It’s so important.

But don’t let the sibling be the outsider looking in at how their family’s running.” – Amanda Owen

Um, that’s probably what I see in council the most in. We’re the last to know because what we think the pa, the parents are thinking they’re protecting. But you probably don’t realize how much we hear and how much we know because we’re just watching.

So, try to figure out a way to include us. And probably the, the one thing that impacted my entire life that I really encourage families for multiple kiddos, is let them be them and find an. It, and it doesn’t have to be forced. So like, luckily I got in softball and couldn’t both of my parents come all the time?

No. Um, but they allowed me to have a life and an, and an outlet that I didn’t have to be Nick’s sister. I didn’t have to, I could be around other families that they didn’t protect me from this outside. , right? And they allowed me to find the outlet. So, I would say that’s the biggest thing. Allow, find your kid an outlet.

That doesn’t have to be, don’t think of it like I don’t have time. Or there’s, how do we manage? You’ll figure it out. Another, a village will happen for your, for the other loved one. Just as much as you build a village around the, the individual with a disability, build the village that allows the other.

Even if that means you can’t go to the games, or you can’t go to the recital, or you can’t transport, find the village to allow them to have the outlet and the exposure because they need, that’s their therapy. That will be their therapy. But don’t allow, don’t exclude them from a life just out of protection because they need to be involved in that life.”
– Amanda Owen

I think it’s, it’s important to just, to, to realize a lot of things that, that you’ve said, even between what you’re saying. Um, you were allowed to just be a kid. You were, you were there, you were part of the family. It wasn’t that it was Nick’s family and you were just there, or your family and Nick was just there.

You both were kids in that family. Um, good or bad, your parents did the best that they could, and they made the choices based on the knowledge that they had. Um, it sounds like your mom was a fighter, and I like hearing that because you remember seeing her fighting in an IEP meeting. Mm-hmm. , you know, as an educator yourself later.

What, what gift was that to you to know that the emotion that these moms are bringing into the table, whenever you would have those meetings. So parents that are listening, you know, you’re doing a good job. Just let your kids be kids and your family and I think that’s a good piece. I’m hoping that they’ve taken some pieces out of this to think a little bit about as, as they’re looking forward to the future of, of parenting, but I’ve, I’ve taken encouragement from those phrases that, that, that, that you shared with us.

Well, and you said fighter. I do get, I will say this one story and I didn’t think about it before I actually write about it. Um, I have a eBook that I wrote about the emotional impact of being a sibling to a brother with a disability. And anyways, you can find it’s on Amazon or whatever. It’s an eBook, but I think I write about it in there.

One of the things that being a fighter, my mom when I, going back to those elementary school when I was being pulled in, I do remember going to some of my brother’s IEP meetings then, and maybe it’s because I saw my mom being a fighter and like advocating. Um, so one day on the bus, I think I was in fourth grade, and, and somebody said, you’re ret—ed, like your brother.

And I punched him. Mm-hmm. Like, I pulled him over the seat and punched him. Um, I fought him. I fought him. Um, I’ll never forget that. And a lot of those things over the years have happened. And I had somebody one day tell me, because I’ve always saw my mom be the fighter, like the voice, and she, I’m just lying here.

Like, I’m very powerful in my voice. But what I try to help families to understand advocate is that we can’t fight the world in one situation like that one word that one kid said or that one situation, we can’t fight. That’s why it was so powerful. I wasn’t really kind of fighting the kid. I really wasn’t.

I was fighting the world of how they viewed my brother, just based on what this one kid said. And I let it, now, my mom did take me shopping and rewarded me whenever I was suspended from school for three days, because she’s like, you know, you advocated for your brother. Yeah. But then she also had to say, you don’t have to.

Like that doesn’t have to be your fight. So, I think you have to play on that fence of like when you fight and when you don’t fight. Um, and you don’t have to literally fight with your fists. I learned that right when I was in elementary school, but sometimes our voice does. We do, we’re very defensive because we are fighting such, we’re fighting the society in some of the situations we’re in.

Um so yeah,

Join us next week. For the rest of my conversation with Amanda. We’ll talk more about her experiences, the book she has written to help support children with disabilities and spread awareness and acceptance, and her work with their nonprofit puzzle pieces.

This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at https://buymeacoffee.com/waterprairie.

You’ve been listening to The Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. If you found value in this episode, leave a review on Apple Podcast to help us reach more listeners.

I’m glad you were able to join us today and hope to see you back next week for another episode of the Water Prairie Chronicles.

Amanda Owen is an accomplished children’s book author, blogger, podcaster, and nonprofit founder/director. She is a lifelong advocate for people with disabilities, inspired by her older brother Nick. Amanda is dedicated to empowering women to find their purpose and lead fulfilling lives, free from societal expectations. She and her husband, Justin, have two sons. Amanda’s inspiring message is to dream big, work hard, own your mistakes, and laugh often.

The post Episode #52: Caring for Your Child with Disabilities: How to Plan for the Future appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

Join us on a journey to the heart of the North Carolina State Fair where we witnessed something truly special. In this episode of Water Prairie Chronicles, we explore Access ABILITY Day, an event that’s all about creating a sensory-friendly event that provided inclusion for special needs families. Hear from families who took part in the event and learn about the Chill Out Zone, a special area set up to help families with sensory needs find a quiet space to relax and recharge. If you’re passionate about creating a more inclusive world, this episode is for you.

Connect with Us: https://linktr.ee/waterprairie

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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/

Episode 51: Inclusion for Special Needs Families at the NC State Fair

Welcome to the Water Prairie Chronicles, the podcast that’s all about supporting and empowering parents of special needs children. Today’s episode is going to take you on a journey to the heart of the North Carolina State Fair, where we witness something truly special. Whether you’re a parent of a special needs child, or simply someone who’s passionate about creating a more inclusive world, this episode is for you.

Last October, we had the pleasure of interviewing Heather Overton from the North Carolina State Fair, who gave us an inside look into their Access ABILITY Day, an event that’s all about creating a sensory-friendly and inclusive experience for visitors with special needs.

I was intrigued by their mission to create a fully and. Inclusive experience and decided to go see it in person. The event was held on a Sunday morning when the traffic to the fair is typically not as busy. We entered through the same gate those needing handicapped parking would use, and we easily found our way to the area Sponsored by bandwidth, which was specially designed to cater to children with sensory needs bandwidth.

Volunteers were on hand to help kids enjoy sensory-friendly activities like pumpkin decorating and making shaker water bottles. My goal was to talk with some of the families visiting the fair specifically for the Accessibility Day event, and to see what their reaction. We had the pleasure of meeting Madeline and her mother Kate as they were making a sensory bottle.

What surprised us the most was that Madeline was already one of our listeners, having discovered our podcast through one of her teachers. And as it turned out, Madeline and my daughter Emily have a shared passion for gaming.

Madeline: Wait, I know you, I’ve seen your podcast.

So this is The Water Prairie Chronicles.

Madeline: That’s amazing.

Tell me your name again.

Madeline: Uh, my name is Madeline.

Madeline. And.

Kate: Uh, I’m Kate.

Kate. Okay. So Madeline and Kate and, um, they’re here at the Access ABILITY Day Fair. And there’s a sensory exhibit they’re doing. And what are these sensory bottles that you’re making?

Kate: Yes. Yeah, we can put all kinds of like beads and glitter and they float. Yeah, .

Cool. So Madeline, did you just come in or have you been here for a little bit today?

Madeline: Um, we came in a little early, but this is like, we’ve just started doing like fair things.

Okay. So what’s, what’s the favorite thing that you’ve seen or done so far?

Madeline: Um, we got to go see the chickens.

Okay.

Madeline: And we had donuts.

Well, you have to have a, have a fair food, some something fried.

Madeline: Absolutely. Yes. Donuts and corn. That’s my goals.

There you go.

During our conversation with Madeline, we asked her to share her ideas for helping children with visual impairments to better enjoy the fair. And boy did she have some great suggestions.

Do you have any, um, advice that you would give for the Access ABILITY Day crew for next year that something that you’d like to see that maybe you don’t know is here yet?

Madeline: Um, I don’t know. I feel like sometimes. I, a lot of the fair is for like people with sensory disabilities. Um, and I wanna see like a little bit more for like helping visually impaired and hearing-impaired kids be able to participate in activities and games.

Do you have a suggestion for maybe a type of hands-on activity they could do that would be a good sensory one for the blind?

Madeline: Um, I don’t know. It depends A lot of. Um, kids that don’t have a lot of sight do a lot of their things by hearing and touch, so

Okay.

Madeline: Maybe something centered around that. Something tactile so you could like, measure better or like braille. So

Excellent. I, I like that advice.

Kate: I think you would also love to snuggle some animals.

Madeline: Yes.

Kate: We could have animals that we could touch or hold. That would be pretty special.

Oh, that’s a great idea. Like puppies or kittens or something. Yeah. On that. All right, well, we’ll let you get back to your sensory bottle. I appreciate you, um, checking in with us and letting us, um, include you on our podcast for this week.

Madeline: Yeah,

and it was nice to meet you actually. Cause I, I really appreciated your, your comment that, that you made. It was one of our first episodes.

In this next video clip, we went to explore the Chill Zone, a special set up by Bandwidth volunteers to help families with sensory needs, find a quiet space to relax and recharge.

Knowing that this area is a vital resource for many families, we were eager to see it in action and learn more about how it’s being used. So, without further ado, let’s take a look at our video footage and see what we discovered when we spoke with some of the volunteers there.

Have you had a good turnout today?

Bandwidth Volunteer: Yeah, so far we’ve had a pretty, um, steady flow people coming in.

Excellent.

Bandwidth Volunteer: Yeah.

Have families seem to have known that you were gonna be here? Or did they just stumble?

Bandwidth Volunteer: Yeah. Yeah, I think most have heard about it. Um, we actually had, one lady say that she was like, very appreciative that we’re doing this for the kids and stuff.

Excellent. And we’ve interviewed a couple people and they’ve, they’ve been really happy with the sensory events that are going on and, um, and they, they weren’t all aware of it. They’re just kind of finding it as they come through.

Bandwidth Volunteer: Yeah.

So. All right. Well thank you. I appreciate the time that you’re putting in and just taking a few minutes to talk with us today.

Bandwidth Volunteer: Yeah, definitely. Thank you.

After seeing how much the Chill Zone was helping families to take a break and recharge at the North Carolina State Fair, I spoke with a group of parents and teachers from ATAP 4 Autism who were experiencing the fair in a different way, I had the pleasure of running into this group as they were enjoying their lunch, and I was thrilled when they agreed to take a few minutes to speak with me about their experience at the fair.

One of the moms, Arlisha shared some valuable insights into what it’s like to navigate the fairgrounds with a child on the spectrum and offered some great suggestions for how the event could be made, even more inclusive and accessible. In this next video clip, you’ll hear directly from Arlisha and get a firsthand look at how families with autism were able to enjoy the North Carolina State Fair.

Let’s take a look.

Arlisha: I heard it through ATAP.

Excellent. And, um, what, what has been his favorite feature so far?

Arlisha: The rides.

Really?

Arlisha: Yes, he loves the rides..

So he is a thrill seeker?

Arlisha: Yes, he definitely loves to ride..

Did you check out the chill zone? Does he need quiet spaces?

Arlisha: So far he’s been doing good with the crowd and everything.

Nice.

Arlisha: So it’s been this, this is the first time since he was five. He’s actually been in a big crowd like this, so he’s doing good so far. I’m proud of him.

He seems to be enjoying it sitting here. So .

Arlisha: Yeah. Yeah, yeah.

If you could give the fair advice for next year of any changes they could make or something they could add or take away, what, what, what would be the first thing you would think of?

Arlisha: Um, honestly, for it to be more suitable for them. Cuz I noticed like, it’s not one o’clock yet and it’s a real big, crowd and it’s, yeah, . So I, it’s still supposed to be catered to ’em, but it’s kind of not. So,

so having a little more space, is that what you’re thinking?

Arlisha: Yeah. A little more space. Yeah. It was crowded. A little too crowded.

Right

Arlisha: because they said after one, That’s when the regular crowd does come and seemed like they all came at nine o’clock like we did . So if they would promote it more better for when it’s a day for them.

Excellent.

Arlisha: So we can understand that it’s, you know, for kids like that.

Right. Right.

Arlisha: That’s what I would say. I also would say like more signs and you know, more vendors about kids like them as well.

Okay.

Arlisha: That’s what I would prefer.

Did you try the, the crafts that they have?

Arlisha: No, not yet.

Okay. So I know they have like a sensory bottle that’s like an oil and water bottle that you can put it’s visual.

Um, and then they have pumpkins that you can decorate.

Arlisha: Okay.

So those are just right at this table right here.

Arlisha: Oh yeah, I like that.

I hope you enjoyed learning about the North Carolina State fair’s Access ABILITY Day, and hearing from some of the families who were able to take part in this special event.

It was truly inspiring to see how the fair organizers and volunteers went above and beyond to make sure that families with special needs could have a fun and enjoyable experience. Now I wanna hear from you. Are there any special events for families with special needs happening at your state fair?

Let me know in the comments below, and we may feature them in an upcoming episode of the podcast. Thank you for joining me on this journey to explore the many ways in which we can support and encourage families with special needs.

This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at https://buymeacoffee.com/waterprairie.

You’ve been listening to The Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. If you found value in this episode, hit the like button and subscribe so you don’t miss future episodes of the podcast. I’m glad you were able to join us today, and I hope to see you back next week for another episode of The Water Prairie Chronicles.

The post Episode #51: The NC State Fair Access ABILITY Day – Inclusion for Special Needs Families appeared first on Water Prairie.

Show Notes:

Find the full directory at waterprairie.com/listen.

Imagine not being able to tell time, count money, or do basic math in your head. For people with dyscalculia, these everyday tasks can be a real challenge. In this video, we’re going to take a deep dive into dyscalculia and explore its causes, symptoms, and potential solutions.

Michelle Steiner joins Tonya to talk about her experiences with dyscalculia and other invisible disabilities and how she’s learned to embrace the disabilities and achieve success in life.

Connect with Michelle:

2 Truths and a Lie:

      Can you guess which statements Michelle shared were her truths and which was her lie? Post your best guess in the comments below. We’ll post the correct answer on Instagram next week so be sure to check and see if you were right.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

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/

Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wollum, and I’m glad you’re here.

The post Episode #50: My Journey with Dyscalculia appeared first on Water Prairie.