Water Prairie Chronicles Podcast

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

It’s that time of year again. The birds are starting to chirp, the days are getting longer, and for parents of children with disabilities, a familiar shadow is looming: The Summer Slide.

We all know the feeling. Your child worked so hard all year. They finally mastered that visual schedule. They finally hit their reading fluency goal. They finally learned to navigate the cafeteria. And now, three months of summer break threaten to wash all that progress away.

In Episode 149 of the Water Prairie Chronicles, I’m pulling back the curtain on the most misunderstood tool in your IEP toolbox: Extended School Year (ESY).

Why “Summer School” is the Wrong Goal

If you walk into your next IEP meeting and ask for “remedial summer school,” the school might legally be able to say no. Why? Because ESY is not summer school.

The goal of ESY isn’t to learn new things; it’s to make sure the “old” things don’t disappear. To get it, you need to understand the two “Magic Words” of special education law: Regression and Recoupment.

Regression is when your child loses skills over a break. Recoupment is how long it takes them to get those skills back once school starts.

For many of our kids, a 10-week summer break can lead to a 6-week relearning period in the fall. That is exactly what ESY is designed to prevent.

Creative Solutions: Thinking Outside the School Building

Sometimes the school’s version of ESY isn’t the best fit. Maybe it’s in a different building with staff your child doesn’t know, which can actually cause more stress.

I’ve always looked for ways to bridge the gap. For example, my daughter participated in specialized summer programs—like a week-long braille and life-skills camp or an outdoor adventure program.

The Pro-Tip: If you find a specialized program that helps your child maintain their IEP goals, bring it to the team! You can ask the school to provide a 1:1 aide or transportation to that program as their form of ESY. It’s a “win-win”: the school saves on overhead, and your child gets a high-quality, engaging experience.

The Strategy: Start the Conversation NOW

Don’t wait until May! If you want ESY, you need data.

Look at how your child handled Winter Break or Spring Break. Did they have more meltdowns when they returned? Did they forget how to use their communication device? That is your data.

Use this template for your email to the IEP team:

“I am requesting an IEP meeting to discuss Extended School Year (ESY) services for [Child’s Name]. I am concerned about the significant regression seen after the recent winter break in the area of [Specific Goal]. I would like to review the data and discuss what services are necessary to ensure they maintain their current skills over the summer.”

Key Takeaways for Parents

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

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

(Recorded March 19, 2026)

Full Transcript of Episode 149:

Hi everyone, and welcome back to the Water Prairie Chronicles, the podcast for parents of children with disabilities. We are creeping closer to spring, and for parents of children with disabilities, that usually means one thing is on our minds: The Summer Slide.

We worry about those hard-earned skills—the ones our kids fought so hard to master—vanishing during the long break. Today, we’re talking about ESY, or Extended School Year. But before we dive in, let me be very clear: ESY is not summer school. If you walk into your meeting asking for “remedial summer school,” the school might legally be able to say no. But if you ask for ESY the right way, it’s a whole different conversation.

What ESY Is (and Isn’t)

Let’s break it down. Summer school is for kids who failed a class or need to “catch up” to grade level. ESY is for maintenance.

The magic words you need to know are Regression and Recoupment.

For most kids, a little regression is normal. But for our kids, if it takes them six weeks to relearn what they knew in June, that’s a problem. That is what ESY is designed to prevent. It’s not about learning new things; it’s about making sure the “old” things don’t disappear.

A Different Kind of Resource: My Daughter’s Story

Now, sometimes the school’s version of ESY isn’t the best fit. Maybe it’s in a different building with staff your child doesn’t know, which can actually cause more stress.

I always looked for ways to bridge the gap outside of the school system. For example, my daughter participated in a summer program through our state’s Division of Services for the Blind. It wasn’t an “official” school ESY program, but it provided incredible transition skills and maintained her independence.

The camp ran for a week and worked on life skills and included extra instruction in Braille. Their social activities included community events where they learned how to use local resources to make the activities more accessible, and there was support from other kids who were visually impaired to give them confidence to try new things.

Another time, she attended an outdoor adventure camp with another organization in our state. These opportunities were our way of giving her different experiences to help her learn or practice skills she was learning in school.

This is a great example of a “win-win.” If you find a specialized program like this, you can sometimes bring it to the IEP team and say, “My child is attending this program. Can the school provide the 1:1 aide or the transportation as part of their ESY?” It saves the school from running a full program and gives your child a better experience. Even if they aren’t able to help, they may have access to other resources if you can help them think beyond the “normal” ESY options.

State Rules & The Resistance

Every state has its own “flavor” of ESY.

To find your state’s rules, search for: “[Your State] Department of Public Instruction ESY Guidance.” The Resistance: You might hear, “We don’t have the budget,” or “We only offer ESY for the most severe students.” Neither of those is a legal reason to deny a child who needs it. ESY is based on individual need, not a diagnosis or a budget line.

The Strategy: How to Ask (Template)

Don’t wait until May! If you want ESY, you need to start the conversation now. You need data from the Winter Break and Spring Break.

I’ll use Leo’s experience as an example. Leo has autism and finally mastered his visual schedule in December. After 2 weeks off for Christmas, he came back and had meltdowns for 3 weeks because he forgot how to use it. That is your ESY data! If 2 weeks off was this difficult for him, what will 2 and a half months of no steady school schedule do to his progress?

If you’re considering asking for ESY services for your child, you need to send an email as soon as possible to your child’s IEP team. I’ll post this in the show notes, but Your Email should be something like:

“I am requesting an IEP meeting to discuss Extended School Year (ESY) services for [Child’s Name]. I am concerned about the significant regression seen after the recent winter break in the area of [Specific Goal]. I would like to review the data and discuss what services are necessary to ensure [he/she] maintains their current skills over the summer.”

Being proactive now saves you a headache in August. If you aren’t sure if your child qualifies, or if you’ve been told “no” in the past, let’s look at your progress reports together.

If you’re ready to push back against a “No,” book a Discovery Call with me. You can find the link in the show notes or go to waterprairie.com/iepcoach, and we can talk about your options.

Let’s help your child keep those skills sharp. Thanks for listening, and I’ll see you next week!

The post 149. The ESY Myth—Maintenance, Not Summer School appeared first on Water Prairie.

Discover how faith and disability intersect as John Fela shares his journey of raising a non-verbal autistic son and finding a church community that truly welcomes all.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this powerful conclusion to my interview with John Fela, author of Faith Like My Father, we dive deep into the intersection of faith, disability, and community. John shares his personal journey of coming to faith through the challenges of raising his son, Chris, who is non-verbal and autistic. We discuss the profound moment Chris surprised everyone with a response during prayer and the vital need for true inclusion in our churches. Whether you are a parent seeking hope or a church leader looking to welcome all families, this episode offers a roadmap for moving from “Don’t Panic” to finding a steadfast anchor in faith.

The key takeaway: True inclusion costs nothing—it starts with a heart to welcome every family.

Connect with John:

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

John Fela (M.Ed) is a national disability advocate, working with both faith based and secular disability organizations. He previously worked for Joni and Friends, a global disability ministry. He is a public speaker, blogger for a variety of disability advocacy platforms, and author of Faith Like My Father, a memoir of his journey as a parent of disability. John lives in Lyons, IL with his wife, Faith, and is father to his son Christopher (ASD/NV). Follow John on his website: www.johnfela.com

(Recorded February 23, 2026)

Full Transcript of Episode 148:

Tonya: John, you shared a lot about your journey as Chris’s dad, the early days, those turns that you had, that were going back and forth. But I’d like to shift now into something that you were starting to mention near the end of our last question, and that’s the topic of faith. you and I have talked a little bit behind the scenes, but for our listeners, I wanna share a little bit.

We mentioned earlier about your book, Faith like my father. I’ve read the book. I love it by the way.

Parents that are listening that are busy, this is one you can pick up and put down as you need to.

It’s an easy one to follow and you’ll get hooked into the stories as he’s telling chapter after chapter. It really was a fun read. But in this, you write about how your own father was absent and he struggled with addiction.

How did you go from that experience to faith being your anchor now?

John: Well, the, the short answer to, um, my faith journey and how I got started on it and what led me to it, quite honestly, was my son and his disability. Um, as I spoke to earlier, um, you know, we went through a season of life and, and I kind of described when we were first shopping churches and that type of thing.

And, um, and I was struggling. You know, I, I mean, we, we were struggling as a family, but I was specifically struggling because I was just lost. I, I didn’t know where to turn. Um, and quite honestly, you know, and, and I talk about this in the book as well, you know, I was saved because, uh, one of my then wife’s friends who was a Christian who had been kind of trying to minister to her while, you know, I mean literally at work in a public school, but, you know, they would have their side conversations and, um, you know, it, she mentioned her church and my wife asked, you know, Hey, do they have a men’s group?

And she said, yeah, you know, and now at, at this point, here’s the thing, at this point, I, I would do anything. I would try anything. I said, you know what? Great. And, and so even though we were shopping churches, we hadn’t come to faith yet. And my experience going to that men’s group, which was really a total 180 from the other men’s group that I described, um, where not only.

Did guys listen to each other, care about each other, ask me questions. I’m, I’m, I just literally like walked in off the street and not only were guys interested in finding out kind of my, my story and my deal, but you know, and, and again, I speak to it in the book, you know, at the very end of it, there, there was a guy who prayed for me.

Now, to be perfectly honest with you, I, I don’t know that it, that that had specifically ever happened to me before. It might’ve, you know, certainly over the years, but, um, nothing that was that, uh, significant, right? And, and I knew what it meant. I could feel it, you know, and, and I remember thanking him afterward.

And, and so really I came away and, and there is kind of a, a really cool story, uh, along with that night. I, I’ll save that for the book. I won’t get into it here, but, but basically, um, you know, I, I came away that night knowing that I was changed. And, and I, I kind of knew why. Um, so, you know, from then, you know, I, I really accepted Christ and, you know, it, it took my then wife a short time ’cause she was still kind of figuring out what this all was.

Um, she did come to faith. Um, and so we then identified as a Christian family, and again, we, we found a, we actually attended the church with that men’s group I described for a short time. But because we moved away, uh, from that area, we, we moved about a half an hour south. We just needed something closer.

So, um, and, and, which we did find, and that was great. But, you know, for me, what, what I had to kind of wrap my, my head and my heart around was the fact that, um, I could not solve all of these crises. Just on my own power. It, it, it just, it wasn’t happening as smart as I thought I was, as experienced as I thought I was, as much resources I thought we had.

Um, you know, I, I needed Jesus, you know, and, and I can’t explain that any other way. Um, and, and because of that now, and again, I, I wanna emphasize here too because as, as you might know, you know, I, I speak to a lot of secular audiences as well. I speak to a lot of non-faith audiences and, you know, for a lot of them, okay, you know, that’s fine.

Great. That I’m, I’m glad that that happened to you. Whatever. Let’s just, you know, kind of, uh, brush it off, kind of keep going, whatever. But, you know, the, the reality is, is that, um, you know, I can’t truly tell my story unless I, I communicate the significance and the importance of making that choice. Because it, it, you know, it wasn’t like all my problems were solved overnight either.

They weren’t. They absolutely weren’t. So I know some people are like, well, okay, so you, you found Jesus, you found God, and then, okay, then everything was better. No, it wasn’t. It it, it was better. But here was the thing, it was better because I knew I wasn’t alone anymore. It was better because I knew I could have hope and I could have strength in this faith that was developing in me.

And, and literally, you know, remembering, kind of hearing that, that voice of the spirit in me saying, don’t worry about all of these other things. You just focus on me. You stick with these guys, learn from them. Get into the word I’ll, I’ll take care of the rest. Your job right now is to focus on me. Said, okay.

And you know, the reality is as, as one guy I had heard, had said years ago, I, I’ve been a very satisfied customer since because. A as I also detailed in the book, and as I spoke to earlier in the conversation, um, you know, it, it wasn’t li did, did life get better? Yes, it did. Um, I still wound up being divorced though.

Right. Um, that was an interesting, um, experience because, you know, we had identified as a family of faith for several years. Um, my wife literally just hands me papers out of the blue. No discussion. No, no, nothing. The, the only, the only red flag. And, and it wasn’t even a red flag for me, you know, I mean, looking back, it was, was she, she did ask to go, um, see our, our former marriage counselor who we would still see from time to time if we had something come up.

Um, and I, I didn’t assume it was any big deal. And, and I, I said, is it something to do with us? Do you want me to come? No, no, no, I’m fine. And as it turns out, you know, she was wrestling with some things and they played out. And rather than kind of bringing me into the conversation or wanting to work it out, she just said, no, I’m, I’m good.

So here was the reality. I I became a, you know, single parent, you know, divorced dad, um, for several years. Um, and you know, here, here’s the thing, when I look back on. My father and, and what he gave me, and, and again, I’ll save it for the book, but the reality is, is my father, who was essentially a functional alcoholic, um, I, I believe he really just kind of drank his life away.

Um, he, he actually was in, in, in his heart, he was a good man and he was actually very talented. But, but I think life just beat him down. And he did not, he was not a person of faith, you know? Um, I was raised Catholic and, and I’m not here to bash Catholics or anything, but, you know, I had a very different church experience than say my, my current wife did, or a lot of my other, you know, friends who were church did.

Um, it, it, it was very different, you know, and it was basically, you know, I’ll, I’ll show up to church for weddings and funerals and, you know, who cares about the rest. Um, so, but with, with that advice he gave me, it wasn’t until I went through the experience of almost losing everything and then coming to faith.

And, and, and I do have a, a, that one specific experience I had where his, his famous tagline of Don’t Panic, which is really kind of echoed through the book where it really kind of clicked for me. And, and I learned that, you know, if if I had nothing else I could lean into that. ’cause at the end of the day, that was the foundation of my faith because it was my belief in Jesus that led me to an understanding of, you know what, you are gonna go through trouble, but it’s okay, not okay in the sense of when I heard it before from those guys, like, yeah, it’ll be okay, but it’s okay because you have faith in me.

Don’t panic, I’ve got you. Okay. And so then. Getting into divorce, single parenting, managing all of these crazy schedules, and then of, of course the blessing of, uh, of finding new love and, and, and being remarried. Um, you know, but, but then the experience of, you know, my son now transitioning, uh, you know, literally, you know, 12 hours away to a, to a, a therapeutic day out of state.

Um, you know, there, there have been a few ups and downs, but, but that advice has been steadfast. And, you know, I, I can say nothing else to it. And, and that’s also why, in, in terms of the book, I, I wanted to be intentional about letting it be a story that anyone could connect with, right. You know? Yeah. Again, there, there are a lot of families of disability and special needs out there that may not be Christian or religious or spiritual, whatever.

Okay, fine. You know, I, I have a message that can still, I think, resonate with you, but at the same time, I, I couldn’t also deny my faith. So I, I tried to write the book to say, you know what? If you’re a parent of disability, you might be an atheist for all I know, but you know what? There will be something in this book for you.

Maybe it opens up your mind hard to some questions, something, maybe it doesn’t, I don’t know. But I couldn’t effectively tell the story without ba you know, basically starting and ending there. And again, with painting the picture in the sense of, you know, sometimes our, our faith and the, uh, evidence of our faith sometimes comes from the mo most remarkable, um, unpredictable places.

And in my case, that that very much was, was and is my story.

Tonya: With Water Prairie for the first three and a half years, I felt like I needed to not be as open about my faith as part of it because I didn’t want to alienate a family that was looking for help.

And so I really struggled with how far do I present my own beliefs and what drives me to what I’m doing to begin with, and how much do I keep that a little bit quieter and keep this as a separate piece of it? And I decided about a year ago that I really can’t do that ’cause everything that I am is based on my faith.

It’s an evolving process. I did wanna ask you though too, so Chris is nonverbal, however he does communicate, ’cause you’ve shared enough about him that, that he does communicate with you. Has he surprised you in how he experiences or expresses his faith?

John: So I have a wonderful story to share about how he expresses his faith. Um, and, and I, I don’t remember if I, if I shared the story in the book or not, um, but, uh, when, when we had, you know, kind of first come to faith, um, a, a year later, and now th this is just amazing in terms of how God works. Okay. So when we were going through, through this difficult season of life in 2012 and, and I had a job loss, I, I was looking to just pick up some work until I got another teaching job.

And, and what I wound up doing was being a, a peer, uh, like a, a, a personal care worker in the home of a family who had an as, uh, an adolescent child with cp. Okay? And he was a wheelchair user. Um, and he was also, I, I, I don’t know that he actually had autism or not, but he also was like functionally nonverbal, this kind of thing.

Hmm. So, um, the, the dad, the, the mom worked, the, the mom was actually the breadwinner. Dad stayed at home because again, the, the boy needed so much support. He did go to a public school, but then when he was home, you know, and of course they had a typical, uh, he had a typical brother as well. So I was basically the guy who would come in a few days a week, be able to help dad, give dad a break, give mom and dad a break kind of thing.

And they were the ones who actually first shared with us about Joni and Friends.

Basically all this mom shared was, well, there’s a, there’s this camp for. Families of disability where you can go on vacation. We said, great, where do you sign up? Right? And, and so we, we went the first year in 2013, and again, I really hadn’t started any of my advocacy stuff yet.

Uh, of course it is interesting because the relationship with Joni and Friends for me personally, um, you know, even though I don’t work for them anymore, it, it led to us not only attending the family retreat for many years, but me again also coming on staff and meeting my, my future new current wife, um, who actually is a long time volunteer as well.

So, so there, there are so many interesting connections, but that, that first year that we attended, so my son has always been a very, very active guy. Okay. Um. At, at 18, he’s kind of slowed down. He moves, but he doesn’t really run. You know, he may walk kind of fast. He likes constant movement, um, but he’s not like a, uh, uh, an elopement concern.

We actually have a joke. We call it slow movement or slope, meaning, yeah, he leaves, he just does it slowly, whatever. So at least you can catch him. But right when he was. You know, and, and I wanna say he was probably, oh geez, five or six. Um, he was fast. He was really fast and he moved a lot. So when you go to family or treat for Joni, and for instance, and again, for any family of disability, especially if you’re a Christian family, or even if you’re not, I, I highly recommend it just because of what a wonderful experience it is.

It’s a week long experience where you get to go on vacation as a family to one of our retreat sites around the country during the summer, and you are supported on all levels. And basically it gives a family the sense of normalcy in terms of being able to take a vacation. So part of that, of course, is that we set you up with a one-on-one buddy volunteer.

Okay? And usually there, there’s a very. The kind of specific matching process and, and they’re actually prayed over as well. So it’s never a random, okay, Joe can go with Bill and whatever, who cares? It’s like, no, we need to really tailor this. So the woman we were matched with, um, her name was Jean, wonderful woman.

Um, middle aged, not in poor health, but she had had some knee surgery or some knee issues. So she couldn’t move. She just couldn’t move as fast as him. Right? And, and it was interesting because I think after the first night she was starting to figure this out. Now, now the way it works is you, you come on Monday and there’s a big celebration and dah, dah, dah and all this stuff.

And then Tuesday is like your first full day. And usually it’s, um, programming for all of the different age groups from the babies up to the adults in the morning. And then afternoon is free time. And then the evenings, it’s like a, like a theme kind of thing. So, um, that first day, um, you know, my wife and I, my ex-wife, we were at, uh, we were in the, uh, tabernacle, the little chapel where, you know, we were getting the pastor’s message and my son who, and he usually never did sit through like the lesson or the story or whatever they had going on.

He just wanted to go roam around and, you know, do do his thing. So the story we were told was that, um. Jean, his, his buddy and my son Chris, they were in the main lodge building and they were in this like common area where there was a fireplace and some, uh, couches and things like that. And there was an, an older woman who was a long time volunteer and she really just did, she just did more like hospitality type stuff.

But, um, she was hanging out because, you know, um, my son needed a break. So he is rolling around on the couches and, and the two of them were talking and, and apparently the way the conversation went was Jean was, you know, talking about how she wanted to do a good job for us. She wanted to do a good job for us as a family.

And for Chris, she just wasn’t sure about her health. If she could keep up. And, you know, this older woman is like, oh Jean, I’m gonna be praying for you all week. I really, really hope that God gives you the strength you need in all of this. And all of a sudden, Chris just kind of pops up from whatever, you know, he’s playing on the couch, pops up, turns around, turns to them and says Amen.

God. And, and then goes back like, so it, it, it’s, it’s interesting because what we learned then was yes, my son is listening, he understands what he’s hearing, and he can respond appropriately given the nature of the situation. Yeah. Um, but, but that was such, you know, that’s still such a wonderful story and, and it’s always kind of burned into me that, you know, he’s, he’s in there, you know, the, the world sees him as, you know, either not being there or just like locked away, but he’s in there.

Right. And, and to have him express that, I mean, to me that’s just one of the, and, and, and we shared that story with, with the, with the staff there at the time, and the volunteers and everybody loved it. So, yeah.

Tonya: You actually mentioned what I was gonna ask you about next, ’cause you mentioned Joni and Friends.

Um, the, so you were with them for, for a while, weren’t you?

John: Uh, I, I was with them for a, a few years, so as, as, as an actual full-time employee. Yeah.

Tonya: So, so you were working with them, you were able to, I mean, being involved with the global disability ministry, you have a, a bigger vision or experience of, of what I’ve seen just in local churches even.

But from your experience, what’s the one thing that you’ve seen most churches are getting wrong when it comes to welcoming families who have a child with a disability or even an adult with a disability? ’cause it’s not always a child.

John: Well, in, in terms of what churches are, are not doing right. As far as disability or disability ministry, I, I could probably go all day letting me tell you.

Um, but, but let me just see if, if I can hit, hit the, hit the high notes here. So, first of all. I, I believe that disability ministry is the next big movement in the church. It absolutely is. Why? Because of the numbers. And, and you know, Joni and Friends, one of the, one of the pieces of data that we like to float out there that, you know, they, that they always float out there is people of disability make up the largest minority in the world.

It’s 1 billion people worldwide. Yeah. I didn’t say that. Joni and Friends didn’t say that. The World Health Organization said it. Mm-hmm. So we know it’s true. What we are also seeing unfortunately, though, and there is research to back this up as well, and they absolutely are gonna talk a lot about this at Disability & the Church later, is the fact that essentially it comes down to about one in 10 churches that have anything formal for disability now.

There may be churches that have disabled people or kids or, or whatnot in them. I’m sure there are. And, and they may, you know, be informally kind of supporting those families, which, which is okay. Uh, my, my son’s experience, he, he’s attended five different churches in his life. Um, and of course he’s 18 and he, he’s, unfortunately, he’s not connected to a church where he is living right now.

That’ll change when he comes back home. But, you know, in terms of his 17 years here, you average that out, that’s about a new church every three years or so. Yeah. Some of those churches had formal things, some didn’t, some worked, some didn’t. You know, I, it really just depends on the fit. But the issue is, first of all, um, most churches are not seeing that it’s something they need to be paying attention to because most churches, unless the problem’s literally right in their face or they have like a, a mob of 10 or.

You know, 20 families coming to their leadership and saying, you know, you need to do something. It’s like, well, I guess we don’t have a problem. Okay. Um, but the reality is, is that most families like mine, one, don’t feel comfortable going somewhere. They’re not sure they’re gonna be welcomed, or maybe they belong to a church, you know, may, maybe it’s a married couple that happened to belong to a church and all of a sudden they have a child and that child has a disability.

Oh, well, sorry, we, we can’t help you anymore. Okay, well, why not? Um, one thing that I, I talked about with churches and, and I, I, I still train churches on the side as well, um, in terms of my advocacy as far as training them on disability ministry, you know, I, I kind of go through all of these mythologies or urban myths, let’s say about, you know, why we can’t do disability ministry.

Some churches think it’s gonna cost a million dollars. Well, it, it doesn’t cost anything to welcome a family. It really doesn’t. The e everybody’s knee jerk reaction is, what is this gonna cost you? I tell ’em nothing. Now, you can spend money if you want, obviously, on environments and materials and fidgets and all this, but it costs nothing to welcome a family, period.

Right. Um, and, and one of the best churches we ever attended with my son, that really was the case. Um, some churches say lack of space. I work with churches. I, I mean, I, I, I, I will tell you this about my church. I attend a very, very. Very small church. Okay. In our neighborhood, I mean, this, this thing essentially was a corner grocery store at some point in its history, it’s that small.

But their heart for disability, if, if I really got into it, it would, it would blow you away because of just the reach and the depth of, of how far they go. So it, it’s not about money, it’s not about space. Volunteers, yeah, we could complain about volunteers all day. E everybody’s hurting for volunteers. But you know what, there are creative ways.

That you can build and develop a volunteer team. And that’s another thing that I talk to churches about. It’s, it’s a particular strategy and, and ways we go about it. But it’s not like you can’t find volunteers. Um, and, and at the same time, some churches think that, well, if another church in the area does, does stuff, you know, let’s just send them there.

You know, I’m, I’m old enough to remember the classic Miracle on 34th Street. Right? Well, Macy’s doesn’t have that. Send ’em to Gimbals. Okay. Well, I’m, I’m doing you a service ’cause I’m letting you know we don’t have it here. So why don’t you go there? The problem is, you know, the problem is, I’m, I’m telling you, I don’t want you at our church.

That’s not okay because what if I really wanna go to your church, or maybe my family has been attending, or my family’s attended for generations and all of a sudden because we have a child with a disability, sorry, you don’t belong here anymore. That’s not okay. The other piece to it. The other piece I’ll mention quickly is unfortunately, and, and I, I really saw this at Joni and Friends and, and it, it drove me crazy, um, because I saw a lot of both families that we served as well as volunteers who thought that essentially the whole ministry was just a camp.

Meaning you’re the guys who do that family retreat during the summer, which they’re awesome. I, I love them. I still tell everybody about ’em, but guess what? We as a disability ministry do other stuff. We have other outreaches. One of those outreaches is church engagement, which was my job. Okay. So the idea here is that unfortunately we have reduced disability ministry to.

The concept of an event, right? We have to do something for these families. Let’s do a camp. Let’s do a night to shine, let’s do a whatever picnic during the year. Well, what about the rest of the weeks? What about the other Sundays? What, what about the other calendar days? Well, I, I, I guess we don’t, they don’t need anything ’cause we gave them a camp or we gave them a prom or a night to shine.

Well, that, that’s not disability ministry. And again, you can have those things and that’s great, but at the end of the day, do these folks, do these families, kids, adults, whatever, do they have a place to worship weekly? Do they have that opportunity? Do they have that community? And this is big for me because my son’s an only child.

And, and I always joke he comes from a family of onlys. ’cause I’m an only child. His mom’s an only child, even though I’m remarried and she’s engaged. You know, the the reality is, is that at, at some point, everybody that he knows is gonna be gone. Who will be his community, right? It can be the church, right?

Not, not saying that could be his only community, but the church can be an integral piece. And part of that, just like if you had an elderly person or someone in hospice or a cancer patient, you know, the church would step in. And it’s the same thing. We have a child with a severe disability who doesn’t really have any relationships outside of wherever he’s gonna be living or his his day programs or whatever.

So this is where we’ve gotta expand our minds and our hearts quite honestly, and say, you know what? How can we be welcoming these families better and more intentionally?

Tonya: And I, I agree. And I’ll add to that, that when you’re thinking of disability ministry, it’s not always the obvious disabilities that are walking through your door.

We have a lot of invisible disabilities that you’re never gonna know, but we can’t be labeling that as a bad. Or as, as a, an unworthy parent who’s just not, not parenting. Right. Um, so there’s so, so much education that needs to come into this. And I, I could talk for hours on, on, on, on this one, but, um, but I did wanna ask you, because some of our listeners, we have church leaders that are listening to this.

We may have a pastor that’s listening. Is there one thing that they could change this Sunday? So they’re gonna be listening to this, it’s gonna be coming out on Friday, that they could change in two days when they walk in that door. That might make a difference. Something small that they could take with them right now,

John: I would say, um, if, if, if there’s something that is just kind of off the cuff, like, you know what, like to, to exactly what you’re saying this Sunday, I’m gonna try this.

I, I would say the easiest and most obvious thing for me is to identify. A family of disability or special needs or, or an adult, you know, it, it could be a, an adult wheelchair user that maybe doesn’t have a cognitive disability or hidden disability, or it, it could be a child with severe autism, you know, who, you know, like, like my son, you know, kind of a thing who might be very young or, or anything in between.

Look for those folks. Maybe, maybe you know them, maybe you don’t, um, may, you know, but take a minute. Scan, scan the lobby, scan the common areas before service starts or after as people are letting out and maybe just stop and, and, and just, you know, again, they, they probably know you’re the pastor or a pastor, but, you know, introduce yourself if you don’t know them personally and, and speak to them as a family and say, you know what, what can we do to make your experience better?

Now, uh, I’m gonna say this, some families. Like mine will give you, you know, a, a whole exposition on, well, let me tell you about all of the ways you can engage with families like us. Some families don’t want to share at all. That’s okay. But you, you wanna start building those bridges because, you know, that’s one of the things that I also encourage churches, especially around the topic of volunteers.

I tell them, first of all, don’t relegate your disability ministry to just a slide on the screen. Okay? Hey, we have a disability. You know, it’s like most people are not even families with disability. They’re not paying attention. What you wanna do is you wanna get a flesh and blood person up on the stage.

Ideally, let’s say like once a month, give them three to five minutes. Hey, we we’re thinking about starting this. We’d like to hear from you though. If you’re a family affected by disability or maybe you know, a family, we would like your input. We would like to know what’s important to you. We would like to know ways that we can engage with you.

And then maybe you do like an open house, you know, after one one of the services or in between or something. You can have an open house for families that might be interested in being served. You could have one for just the volunteers. You could have one for both. So folks could actually meet each other and say, oh, these are some of the families I might be serving with or wanna serve.

Right? So, so there are, there, there’s a variety of ways you can, you can approach it. But the idea here is that. It, you can’t also see it as just another program on Sunday. Well, it, it’s like kids ministry just set up a classroom and just stick ’em in there and then they’ll be fine. And I, and I always tell churches, I’m like, it’s, it’s great to have a dedicated space.

I’m not saying that’s a bad thing, but you don’t, you don’t wanna silo folks. And, and that’s a word we use a lot in disability ministry. The siloing effect of, well, you know, those folks have a place, it’s, you know, down the steps, down the hall, close the door, see you later. Nobody knows you’re there. Right.

Okay. That’s not what we’re going for either. So reach out to these families. Let them know that you’re, you’re listening and that, and that you wanna listen. Um, again, some families may be, you know, really, uh, en encouraged by this and, and eager to, uh, to step up. Some families, maybe they, they just want their, their privacy, that’s okay too.

But you want to let them know that they’re seen and they’re important. And then, you know, again, at, at some point maybe they, they do reach out and, and they do try to foster that, that deeper relationship and see what, what the church can, can really do and, and mean for them.

Tonya: But I, and I’ll, and I’ll say too, that as a parent of a child with a disability, just having someone take a moment to say hello could change your whole week because you’re so focused on care and treatment and worry about either how your child may be viewed by others.

Or are they stepping out of line or, you know, it, it’s really hard to go into church and relax because you don’t know, even if they’re in that Sunday school room, down the hall, if they’re behaving themselves or, or if they’re causing, causing trouble. If, if they’re, if they’re eloping and someone’s running after them and, and you don’t know where they are, um, you’re always waiting for someone to come, come and tap, tap you on the shoulder because you have to leave to go take care of ’em.

So having anyone take just a minute to say hello and, and listeners, it doesn’t have to be the pastor. If you’re sitting in, in the pew or if you’re in the, the foyer and you see someone go over and just, just say hello. A five minute chat could completely change the rest of that, of that person’s weak. Um, and now you have a new friend.

So, um, so I would just encourage you to, to take whoever’s listening to this, take this into, into your world, wherever you are, and, and remember how much, how much that can make a difference for another family. Um, I do wanna ask you too, um, ’cause I was thinking about this. I family has an experience this.

But have you ever walked out of a church because of the way your family was treated? Have you ever, have you ever run into a situation like that?

John: Not personally. I, I will tell you that pretty much every church we attended, they, they absolutely did their best. And, and at some point it, you know, you just realized, okay, we’re, we’re kind of at, at the end of our, our road here.

And, and that’s okay. You know? Um, I, I have never had that experience personally. Now, now to, to your point you just made, I will say, um, what, what every church leader and pastor needs to know is families like ours are already so tuned up on the anxiety dial. Oh yeah. That the, you know, we’re, we’re used to getting it in, in the grocery store, at the playground, at the whatever, at the Sam’s Club, you know?

Okay. Who’s, you know, my, my kid’s having a, a bad day. Who’s, who’s looking, who’s what. And and again, even if you try to shut down, somebody’s doing that. Right, right, right. Yeah, exactly. So, you know, as soon as you walk into a place, pretty much if you’re wanted there or not, or are you getting weird looks or, or it’s just a feel.

Right. So we’re always on guard for that kind of stuff. And, and, and again, I, I think that we were blessed in that we always, for the most part, had good experiences. Uh, do I know plenty of families that have not? Absolutely. In fact, I’ll, I’ll tell you a great little story. There was a guy who, uh, he was a pastor here in the Chicago area.

He actually, um, he, he was also a family of disability. He had a son with a disability. Um, he was actually the camp pastor at some of our Joni and Friends retreats over the years. They eventually moved to, um, California. But he told me a story about the church that he grew up in. Okay? This is the church he grew up in, that he still attended with his family and was a pastor of, he wasn’t the lead pastor, but he was a pastor.

He was on staff and he kept trying to encourage the, the church leaders and the board, can we do something for disability? Can we set something up? Can we do a ministry? And, and they basically just flat out told him, you know, we, we get this is important to you or this is what you want, but we’re not doing it.

So basically it was like, you know, you can take it or leave it, buddy, but we’re not changing for you and we’re not changing for anybody. Now, how much of a slap in the face is that for someone who grew up in, in that church and is now serving that church and whose family attends to say, we don’t want you?

Right? And, and these are the experiences. Sometimes they’re not as harsh as that, but you know, again, even if the church thinks they’re doing the right thing by saying, sorry, we can’t serve you here. You know, so many families like us are used to just having doors slammed in their face, literal doors, metaphorical doors, church, school, you know, neighborhood what, whatever you got.

Um, so how much of a difference does it make to come in here and at least know you’re wanted? And again, you can be honest. You can say, you know what, we, we don’t have anything now or yet, but you know what? We would love to see how we can make it work with your family. Please. Is there anything that you can share with us to help make this experience better?

Or how we can support you, your, your family, kids, et cetera.

Tonya: Yeah. Yeah. And it’s, and, and there’s so many creative ways to it. It there, there’s no cookie cutter here that has to be followed. Um, every, every congregation’s gonna be different, every community group’s gonna be different in how they, how they embrace that and take it on.

So as we’re talking, I, I shared a little bit with you that, um, that I’m working on these presentations with churches to come in and partner with them. Um, if you don’t mind taking a minute, I just kind of wanted to tell you an idea that I have here.

I have these inclusion labs that I’ve put together where I can come in with the church, help them. Kind of strategize physically how is their environment, but also working with their volunteers in workshops with understanding a little more about what they could be doing to help make it more inclusive.

And so what I’ve put together is a card deck and the whole idea is that during a morning huddle, before a team goes into their Sunday school time, whatever they’re doing, they would take a card, and they would talk through that card. And so an example of one would be, I’ve got one pulled up.

It’s called the “Wait Time Gap.” So you’ve got a teacher in a Sunday school class has asked a question. And so, you know, you always have the kids who are raising their hands to answer right away, but you may have a child with a slower processing speed. And so how do we help them be included in this?

Again, parents we’re talking about an invisible disability here. This is a child that you’re not going to know, just looking at them that they’re facing a struggle. But they’re not gonna be the first one to answer every single time. So as a Sunday school teacher or a camp leader or whoever you’re coming in, how do we bridge that?

And so on the card, you have that set up there. And then there’s two questions that go with it that are collaborative group questions. The first one is, “How often do we let the fastest speakers dominate our group?” And then the second one is, “What visual signal can we give to show that there’s thinking time happening so that everyone can go?”

And so then you would give the group time to kind of brainstorm a little bit there to kind of evaluate where are we? What could we do differently? And then I’m adding on the back of the card, a perspective shift or behind the barrier. Kind of a closing thought to understand why one child in your group may need that extra time and why it’s important that we give them that time.

And the, the natural answer that I would’ve given in that situation would be. Let’s, let’s have a ten second thinking time, and then I’m gonna call on someone to answer so that it’s not always Johnny who’s raising his hand the first time that that always answers. And maybe Susie now gets a chance to share her, her thought there.

It’s a deck of 30 cards they would have, that they could go through, and there’s a different scenario every time. I’d love some input on that. How does that sound to you? Do you feel like that’s something that would be of benefit or that a group would use?

John: I think that could be absolutely valuable because, in terms of addressing and, and I know when I have trained churches and, and still do you know.

I, I always start with understanding the perspective, not just of the family, but also of God, right? So foundationally we start from a place of scripture and we start from a place of, of fundamentally understanding, um, why this is important to God, quite honestly, because he is the one that tells us we need to be doing this.

Um, but then as we get into more nuts and bolts stuff, I, I know for me, um, you know, a a a lot of folks, you know, even if they are, you know, seasoned parents or even teachers or whatever, you know, they, they could have a little bit of trepidation coming into some of these situations. So as much as we can do kind of these role play scenarios, um, you know, I know even at Joni and Friends, when we would have our events, we had like a disability experience where everybody was kind of paired up and okay, you know, your thing is you have, um, you know, this visual impairment or you have this going on, you a wheelchair, whate, and, and, and, you know.

We, we each get a turn to see what that feels like, but then also how to best support that person. So, and I know even with a lot of the kind of the hands-on stuff that I do in, in these trainings, you know, again, a lot of that is okay, we’re gonna role play through, you have a child who’s stemming, you have a child who’s fixated on whatever.

Okay? How are we responding to that? And, and again, this, this is, there’s a, there are a lot of man in the mirror moments in these kinds of trainings, as I’m sure for you as well, because it’s okay, how, how are we really seeing this through our eyes? Right? Are we just seeing this, this child who doesn’t want to come to the group lesson, who’s flipping the Lego piece?

Well, they’re being defiant. And you know what? Young man, we’re gonna always have a talk. And I’m like, that Lego that he’s fixated on is the only thing that’s keeping him in that room. Right now. Yes. So let’s figure out how we can work with it as opposed to, well, this obviously is a problem, you know? So, you know, and, and mo most people don’t, luckily don’t have that approach.

Some do, but, you know, but you know, the, the point being is that, yeah, I, I, I think that as much as we can build confidence into people by giving them as many real, real world scenarios and, and also helping them to kind of get a little bit of a window in terms of the, the why someone may be right, demonstrating a, a, a particular behavior.

Um, you know, I’ve, I’ve heard it a million times. All behavior is communication. We know that. Um, but, okay, so you’re communicating something. Can we, can we find out what that might be? But then also, how do we respond to it appropriately? Right? Not out of emotion, anger. I’m having a bad day, so now I’m gonna let you have it.

It’s like, okay, you know what, um. Maybe, maybe Johnny just needs to flip that Lego today. That’s cool. Um, you know what? We’re glad Johnny’s here, you know, at, at, at the end, at the end of the day. And, and here’s the other thing too. Um, you know, and, and again, seeing it from the eyes of a parent of disability and, and as a teacher, um, I want my son to be included as much as possible.

Do I care if he colored the picture of Jesus perfectly? You know, in his son A absolutely not. If, if we got three strokes of the crayon on there, awesome. You did great. I fine. You know, to be like, that is inclusion. Right? Right. And, and that, and that to me, I’m like, wonderful. You know, we made sure that he got to be a part of it and that’s what he did.

Yep. Now, um, is he capable of more? Maybe could we support him to do that? Sure. But we’re not forcing something for the sake of forcing it. Right. We are meeting them. At, you know, at at, at their level and, and where they’re at, but still allowing them to have an experience with us as a community.

Tonya: Yeah. My, my daughter’s, um, now, my daughter’s 25 now, and, um, a lot of her advocacy through the years has been not only for herself and for the world around her, to bridge that gap with the sided world and the blind world, but also for her friends who are blind to understand what, what, what you’re advocating for.

And it’s not always guns blaring advocacy. Sometimes it, it, it, it’s both sides, you know, we need to understand each other and we need to have room and it, and, and, you know, so you may have, well, well, you, you, you had said it earlier. We, we, we don’t know what we, what we don’t know. And, and this is, this is a big piece of what I want to be able to bring in and through.

If, if this is a simple download you can do, or a deck of cards you can buy. It’s an easy way for you to, to think through it, but also to understand and start learning. Hey, there, there’s a reason why he’s flipping that Lego.

It might be that Johnny that’s flicking the Lego, that’s how he’s paying attention is because he’s, he’s doing this repetitive motion so that he can focus on what he’s listening to.

And um, and so if we stop that now, we just stopped him from hearing the lesson, but we also. Set him somewhere else because now he’s no longer sitting still. And so, so there, you know, there’s a lot of pieces to this and we don’t know all the answers. No volunteer has to come in and know the answers to everything.

Um, as a teacher, as a special needs parent, I don’t have all the answers. I understand what my kids have faced and what our path has been. I’m still learning that now in their early twenties. But, um, but I haven’t been where you are. And so, so I learn every time I have a conversation with another parent.

And so it expands my, my knowledge base. But I’m gonna run into someone tomorrow that I don’t know anything about their background. And, and if we just, like, like we said, if we stop and say hello, start the conversation and ask questions. I don’t know a single parent who would be upset because you ask how you could help their child.

They may, they may I, I, I, correct, correct that though they may be upset because they don’t want the focus on their child. That there, there is, there is a set that set that stage. And be sensitive to that if, if someone pushes back against it. But most, if they’ve come in and they really wanna be able to drop their child so they can go have some parent time, um, they, they will embrace that question because, ’cause they, they have the better answers for you already because they’ve lived this life and can go with a Well, I, I wanna, I, I mean I, I, I could continue talking to you for another three, three hours on this, but we, we probably should wrap this up, but I want, I wanna give, give you a chance for the last, last word here.

Um, if there’s a parent listening right now, maybe they’re sitting in a church parking lot and they’re wondering if it’s even worth going inside, what would you want them to hear?

John: So whenever anyone asks me what, what, what’s your advice? Like, what, what’s your big life advice? And, and using my former teacher brain, I always say it’s a number one little, a number one, little B conversation.

Number one, little A for me is my faith. I’m nothing without my faith, right? My Christian faith is the foundation of who I am and, and ultimately how I respond to, to my child. And, and all of these, you know, various challenges we’ve talked about, understanding that for some folks, okay, well maybe you are not a serious Christian.

Um, maybe you’re a Christian in name only. Maybe you, um, you know, just hate the idea of church where wherever you are on that spectrum, if, if you are thinking about going to a church on a Sunday, or if you’re literally sitting in that parking lot and kind of, you know, twiddling your thumb saying, is this really gonna work?

I wanna remind you about that one. B one B is community. You cannot do this alone. And, and I think what, what we have to understand is that, and when, when I do presentations at conferences on community specifically, I always start out by saying, you know, you, you don’t have to, you know, do all this crazy advocacy work or have all these relationships start out small.

You know, in, in my early days when I was trying to figure this out, it was really just people in my neighborhood. It was people that I was close to. It was, you know, and, and one of the other places where you can really find. Um, a a lot of what you’re looking for can be a really good church. Now, that may be a church that has a disability ministry, which is great, but even if it’s not, you know, like, like there was one church we attended for five years.

They didn’t have a formal disability, anything, but they supported us. They loved our son. And you know what I, I got so much from the experience in terms of understanding what real community was, not just in terms of the way we were served, but then the ways that we gave back. And, and that’s another thing that I also wanna just sprinkle in here for church leaders understand that many of you may see that family of disability as a burden.

Here’s the reality. Um, and I, and I, this is one of my other famous taglines when I talk to church leaders, you have an obligation and an opportunity to serve these families. The obligation is that God, Jesus, you know, they, we are literally told in the Bible, old and New Testament you. Everyone is my child.

You have to serve them. However they show up, wheelchair, autism, typical, whatever, you know, they all have a place at, at my table, right? But the opportunity is that these families not only, you know, want a church experience in a community experience, but they also wanna serve in many cases. And in many case, in many cases, it’s the person with the disability that wants to serve and can serve.

But people are just thinking, well, no, they have whatever they have and, and they can’t do that. Okay? So, understand that with church, when you belong to a good church, disability ministry or not, you have an opportunity, one to, to be served, to be loved, to make relationships, maybe with families like yours, maybe with typical families, a a a lot of families with disability.

You know, I, I wanna join a Bible study or a small group. You know, sometimes churches offer disability. One, we’ve been a part of that as well. But at the same time, you may just wanna be with people who are. Not like you, that’s okay too. But also I learned early on from being part of a good church, working with different ministries, working, uh, for different big events, for different outreaches on, on, on a number of levels.

And I learned organization and communication and working with people, and all of those things were things that I later took with me, right? So, you know, I, I’m not saying join a church, you know, I, I’m not saying go into it with the same expectation. Like you go into, uh, you know what, whatever, you know, networking group or whatever you’re in kind of thing, right?

Um, uh, but at, at, at the same time, understand that your family can be filled up spiritually and emotionally as well as you can also develop some. Really strong relationships. And, and in my case, you know, certainly, uh, relationships, you know, I, I have very close friends that, that, you know, again, just started out as another guy I went to church with who might’ve been in, you know, one of these groups.

Um, you, you never know where, where your next best friend is, is gonna come from, right? You really don’t, and that’s, and that’s the other thing, when I go to conferences too, um, and, and I encourage people, I say, Hey, look, turn to your left. Turn to your right. Guess what? You may find someone that you’ve got something in common with.

Maybe you grab a cup of coffee after this. Maybe, you know, somebody even, you know, gives you a right to the airport. Maybe you even met your new best friend. I, and, and again, even, even at events like that, I have made some wonderful relationships. So again, um, when church is done right, it’s going to welcome you regardless of the level or the amount of programming that they have.

Um, but take, take that step. Because again, you can’t do it alone. Right. And, and you know, even if you connect with one person, it’s worth it. And, and I, and I always say that, especially to the dads out there, because guys have a real hard time sometimes with stepping out that way. Um, you know, I say, look, start with one, find one if you can’t find one.

Which I, I would be surprised if you couldn’t, but if you can’t find one, you know what, reach out to me. That’s fine. And, and I always welcome in all of these interviews and presentations and things, I always welcome anyone to reach out to me. Maybe we don’t live in the same part of the country. Maybe, you know, we’re not gonna connect on exactly the same level.

But you know what, maybe I, I can connect you with someone that is in your area or that that is maybe more compatible, so to speak. So, you know, reach out, that’s okay. But don’t do it alone. ’cause you can’t. I, for me personally, I, I can’t do it without my faith, but I sure as heck also can’t do it without community.

And that is what I would say to anybody listening for sure.

Tonya: Yeah. Well, and, and if they’ve listened this far into the conversation, they’ve already heard those examples of knowing why community is so important. So I appreciate you coming, coming back to that again. I think that’s exactly why we need to be having these conversations and somebody listening needed to hear that today.

So thank you for sharing that.

John: Absolutely.

Tonya: I, I, I appreciate you, you sticking through all these different questions that I’ve had and, and, and entertaining them for me. I know, I know we’ve had a longer conversation than a lot of times I’ll have with my guests. But this, this has been great. Um, I appreciate the work that, that you’re doing.

The willingness, uh, that you have of sharing your story, not just in the book, but just coming out and, and being vulnerable and answering these questions and for caring about families across the board, you know, whether they have a child with a disability or not. Um, I know this conversation’s gonna help a lot of people.

So, John, if our listeners want to connect with you, um, and learn more about your work, what’s the best place for them or where’s the best place for them to find you?

John: Yeah, for sure. So, I, I always like to joke, you can just plug my name into the Google machine. You’ll, you’ll find me. But, um, I, I, I do have a website.

It’s just my name.com, johnfela.com. Um, I have been working on getting it a little more updated and a little more refreshed. My, my issue has been, I do have a lot of content out there. Um, a lot of it is on the website, but, but not all. So I mean, if, if you do a search, you may find some things that, you know, didn’t pop on there for whatever reason.

Um, but I’m always sharing on social media. So you could go to Facebook. I actually have a personal Facebook as well as a blog page. It’s John’s Special Needs Blog. John’s Special Needs Blog on Facebook. Reach out to me at, at either one.

I’m on Instagram, @john_fela_1. Um, I’m on, uh, LinkedIn, John Fela, uh, X / Twitter, uh, I think I’m @jfelageller74 on there. Um, and, but you know. Otherwise, you know, Google me, reach out and, and again, you know, please feel free to connect with me message. However, I’m, I’m more than, uh, happy to connect with you.

Tonya: And where can they find your book?

John: Absolutely. So my book is on all major retail sites.

So you could go to Amazon, Barnes and Noble Books, the Million, you can find it at any of those. If you go to my website, there actually is a, a banner that, that’s essentially a link. You can just click on that and that’ll take you to it. Uh, but, but again, if you go on any of those major retailers, you’ll be able to find it now.

Tonya: Alright, great. I’ll put all of those links in the show notes. So listeners, if you’re on the website, it’ll be right in the website. If you’re on Apple or Spotify or any of the others, click the link back to the main episode page and you’ll see all the links there. The book itself, I’m gonna say one more time, easy read, full of encouragement. I encourage you to pick it up. This is not a 500 page book. you can handle this even if you’re a busy parent. So while you’re waiting for the pasta to boil you can read a little bit and make it through it. Everyone that’s listening, if this episode resonated with you, share this with another parent.

Someone else needs to hear this as well. So pass it on. It might be a pastor in your church. It might be another volunteer or a friend, but let’s spread the word and get out the message of what John’s sharing here. And I appreciate all of you being part of the Water Prairie community.I’m glad that you’re here, and I’ll see you next week.

The post Episode #148: Faith and Disability: Where Community Becomes Home (with Guest John Fela) – Part 2 appeared first on Water Prairie.

Join Tonya Wollum and guest John Fela for a raw, honest look at special needs parenting for a child with non-verbal autism. We discuss the challenges of an autism diagnosis, navigating medical crises like Chiari malformation, and managing the strain of divorce in the special needs community.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this deeply vulnerable episode, we sit down with John Fela, author of Faith Like My Father, to discuss the reality of parenting a child with level three non-verbal autism. We move past the surface-level advice to address the heavy hitters: the initial diagnosis, the terrifying reality of a child’s sudden seizure and brain surgery (Chiari malformation), and the profound strain these challenges place on a marriage. John shares his “Swiss Army Knife” approach to advocacy and explains why finding a community of people who “get it” is the single most important survival tool for any parent. If you’ve ever felt like your journey took a turn you weren’t prepared for, this conversation is for you.

Connect with John:

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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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/

John Fela (M.Ed) is a national disability advocate, working with both faith based and secular disability organizations. He previously worked for Joni and Friends, a global disability ministry. He is a public speaker, blogger for a variety of disability advocacy platforms, and author of Faith Like My Father, a memoir of his journey as a parent of disability. John lives in Lyons, IL with his wife, Faith, and is father to his son Christopher (ASD/NV). Follow John on his website: www.johnfela.com

(Recorded February 23, 2026)

Full Transcript of Episode 147:

Tonya: Welcome to the Water Prairie Chronicles. I’m your host, Tonya Wollum, and today we’re diving into a story that is both deeply personal and resonates universally for our community. I’m joined by John Fela, a dedicated advocate and the author of the new book, Faith Like My Father, John’s journey as a father to his son Christopher, who has level three autism and is nonverbal, has gone through many twists and turns.

In this episode, we aren’t just talking about the what of raising a child with a disability, but the how. How to survive the initial diagnosis, how to navigate sudden medical emergencies like brain surgery, and how to hold onto yourself when your marriage faces the immense pressures of this lifestyle. If you’ve ever felt like your journey took an unexpected, frightening turn, this conversation is for you.

John, welcome to Water Prairie.

John: Thanks so much. It’s great to be here.

Tonya: Listeners, John and I first connected maybe two years ago, and then just kind of lost track of each other for a while and weren’t able to, to get this to work. I’m kind of glad that we didn’t, because you’re gonna hear more about it, but John has just come out with a book. This is the perfect timing for us to talk about what he has in the book, and it fits right with what I wanted to talk about for season five. So, John, I’m glad that it didn’t work out the first time and that you’re able to come on now.

John: The timing is always right. Isn’t it amazing how that works?

Tonya: Exactly.

John: Yeah.

Tonya: A lot of our listeners have heard of you before, and they heard a little bit during my intro, but tell, tell us just briefly where you’re coming from, what your background is, and why you fit in well with a podcast like Water Prairie that caters toward families who have children with disabilities.

John: Absolutely. So I have a joke I like to tell, which is I like to lovingly refer to myself as the Swiss Army Knife of Disability Advocacy or Disability Ministry, depending. And the reason is because I do a little bit of everything. So I, I’d like to share that, um, special needs and disability advocacy and, and support and resources are, are really my whole world.

Um, certainly I am the parent to, uh, first of all a, a son with severe level three autism. Chris, he’s also nonverbal. Um, he currently resides actually at a therapeutic day school in Wichita, Kansas. So I’m in the Chicago area. Um, he’s there because his public high school couldn’t meet his needs, um, at least not anymore.

And so he is finishing up high school there and possibly a little bit of his transition years, and then he’ll, you know, eventually come home. Um, you know, but I, I also have a background in education. I was an educator for almost 20 years, including special ed. Um, and then I have been involved in disability advocacy and ministry for almost about 10 years now.

And that has really been a whole variety of things. Um, it has been as simple as putting together a support group for the special needs dads in my own community, some of which I still run today. Um, but then also getting connected with larger, um, organizations, whether they’re, they’re based in Chicago or not, but they have a national reach and focus, whether they are disability ministries like Key Ministry, and I’ll be uh, speaking at their Disability & the Church conference this year, or if it’s an organization like Special Fathers Network, which is based here in Chicago that supports special needs dads and, and dads of of disability, um, through a variety of resources and, and outreach.

Um, or for example, my work with Joni and Friends, I worked for Joni and Friends, which is a global disability ministry and, and my relationship with them is actually pretty interesting because, um, I was served by them as a family of disability for many years with my own son in terms of specifically attending their, uh, family retreats that they do in the summer.

Uh, but then I worked for them and I worked out of our Chicago area office specifically equipping and supporting churches on disability ministry and supporting the disability population in their congregations. So it, it really is just kind of who I am. And, you know, I’m, I’m really kind of all disability all the time.

Um, you know, even beyond a a day job, it’s personal to me, but I also like to say I, I see it from kind of a 360 view. I, I see it from a variety of perspectives. Parent, former educator, um, advocate, et cetera.

Tonya: You’re coming in from a different perspective than some of our parents are as, and part of what we’re gonna talk about is a little bit of just those first signals that we have, that something’s going different with our child.

And because you’re an educator and had some experience there, you may have had a little more, um, knowledge coming in to, to this parenting experience or maybe not so, so we’ll. So we’ll see. So, so the first thing I wanted to ask you was, when did you realize that parenting Chris was gonna be completely different from what you expected it to be?

John: So I, I have to tell you in terms of when, when we felt his mom and I, or when I felt, um, this was gonna be a different journey, um, I would say that we didn’t really know until he was. About two or three years old. Now, when I say that, I want to emphasize he was a preemie. He was born five weeks early. We were in the hospital for a week.

You know, he was in the NICU, et cetera. Um, but beyond that, we just felt like, okay, this is, this is pretty normal. Now, the reality is, is that I was an educator and, and his mom was an educator. She was a middle school teacher. I was mostly an, an elementary teacher. I had some background in, you know, Montessori and preschool and some of these things, but it was still our first child.

I didn’t know what I didn’t know and, and could say the same for, for both of us. So it, it really wasn’t until, and, and I love telling this story, by the way, it wasn’t until he had his 18 month checkup. Now usually that’s kind of the, the milestone for the, uh, where a red flag might present itself. So we take him for his 18 month and, you know, the pediatrician asks us a battery of questions and is he doing this?

Is he doing that? Now, what we had observed was he was a happy kid. He definitely liked being active, but um, you know, the, the walking was taking a little longer. There maybe were some little motor issues. Um, and we weren’t hearing any verbalization, right. We weren’t hearing it really any babbling. You know, sometimes you’d hear kind of a squeal and, and that kind of thing, but, you know, it, it really wasn’t anything that we would relate to language.

So the pediatrician asked us, naturally, is he talking? And we just explained exactly, you know, the, the way I said it. And her response was, okay, so here’s what you do. You go across the street to the professional building. ’cause there was a, the hospital was right across the street. She’s like, go to the professional building and see the speech therapist.

And her exact words were, I don’t know what they do, but they play with the kids and make ’em talk. So take ’em there, it’ll be fine. And of course we’re like, okay. So we go see the speech therapist and she played with him. And he didn’t talk. And then, okay, what’s next? Well, let’s test his hearing. We, they tested the hearing.

Um, you know, hearing seemed fine. Uh, we then went through, in Illinois, what’s referred to as early intervention services through the state, which is where the, if your child is under the age of three and, and you believe there, you know, there’s a developmental issue. You know, you’ll get someone to come in, evaluate.

Now, again, it’s not a formal evaluation, but they will let you know if there’s something there, then they can provide some basic services, you know, OTPT, this kind of thing. Um, and then it wasn’t really until he was almost three that we took him to a neuropsych and I was actually teaching at a, at a private school.

And, um, it was a neuropsych that actually some of my, uh, students had seen. So I talked to the parents about her. And she was wonderful, and she diagnosed him with, uh, pervasive developmental disorder. Now, that doesn’t exist anymore, but at the time, it was pervasive developmental disorder, not other, not otherwise specified.

Okay? Now of course, he’s autistic, he’s just on the spectrum. Um, but you know, at, at that time that’s, that, that was the label she gave, and she felt very confident about it. And she recommended, you know, a variety of different therapies, A, b, a and, you know, OT and, you know, et cetera. And, you know, some of those things we had tried and some not yet.

And we said, okay. So we were already kind of jumping in with both feet in the water, but now we were really committed.

 So, so we tried as much as we could.

My child still has autism. My child still doesn’t speak. Um, he has made progress. Um, but, but the reality is, is that, you know, we really hoped that in a year or two it would just fix itself. It didn’t, that didn’t take away from the fact he’s still my son. He’s still an incredible human being and, uh, he’s loved by his family.

Tonya: John, we’ve talked about those early years, the hunt for answers, the therapies and the eventual diagnosis. But for many of us, just when we feel like we have a handle on the new normal of our child’s developmental needs, life throws a curve ball that brings us to our knees. For your family, that curve ball arrived in the form of a sudden medical crisis.

Can you take us back to when everything changed for you?

John: I’ll tell you, I remember the day it happened. Um, it was March of 2019. It was a Saturday. I was home. Um, his mom was bringing him back from one of his many therapies.

Um, I was just finishing up a call with one of my dad organizations and I get a call from her saying he threw up in the car. You know, just get ready when we get home to help clean him up. And I’m thinking, well, he ate too much or ate the wrong thing or whatever. And go out to the car, open up the back door, and it was like, I, you know, it, it was almost like experiencing a, a stroke, a, a, a stroke patient or someone who had just experienced a stroke.

Um, his eyes were kind of rolled in the back of his head, drooling took him outta the car. He basically collapsed to the ground. He had no motor function at all. We didn’t know what this was. We had no clue because he had never had a seizure.

And of course, being nonverbal, you know, we, we know that leading up to, this may be a week or two, he has a touch chat on his iPad, you know, his communication, you know, app. And, um, you know, he kept saying something to the effect of like, head hurts. Well, you know, that that could be anything that could be a cold or a fever or something.

Right. And, and I think we probably just gave him some Tylenol and that was about it. Well, he essentially had the equivalent of, of a, a grand mal seizure. Um, we didn’t know if we should just take him to the hospital ourselves or call the ambulance. We decided to call the ambulance. Paramedics came, he had two more seizures in the ambulance on the way to the hospital.

Get him to the hospital. They put him in, in the er, they hook every different line and tube up to him. And, and of course they, they give him a CT scan. And I had left the hospital because we’re assuming, okay, whatever this is, we’re gonna be here a while, so I’m gonna go pack a bag, we’re gonna go pack an overnight bag, and you know, we’ll kind of see where this takes us. Either on the way to the house or on the way back. We only live maybe 15, 20 minutes away. Um, I got a text from her saying he has a chiari, CHI, is it C-H-I-A-R-I? Okay. Yeah. Now I don’t know what that is. I’m thinking he has a brain tumor. So I’m like, oh no, a chiari. And then I Google it and I’m like, huh. So what it actually is, is that it’s a brain malformation.

Tonya: Yeah.

John: The brain and the skull don’t grow symmetrically, so it causes pressure that leads to seizures. Now, it doesn’t always lead to seizures in every case. In fact, in most cases it doesn’t. But with him it did.

Um, so okay, fine. You know, and, and then of course we’re calling people and texting and telling them where we are. We saw, you know, Dr. Rug and everybody, oh, he’s amazing. We’re like. Okay. If you say so, you know, be, because again, we, we didn’t expect any of this. And it was, again, so far out of left field for us.

You know, we didn’t know how to react other than, okay, well we, we have to get him whatever chiari needs. And then when we realized what it was, okay, at least we have a, a clear path to that. I will tell you though, this, this story, and this is probably one of the hardest stories I share. Um, so he, he had the seizures in March, in April of 2019.

He had the surgery, the morning of the surgery. Now, I, I want to emphasize one thing about my son. He’s fearless. Nothing bothers him. He will go anywhere. Anywhere you wanna go, anything you want to check out, he’ll open any door. What’s here? What’s there? Take me anywhere. It doesn’t care. The morning of that surgery, and, and, and again, to be fair, he had been a million doctors in his life.

He didn’t always like going to the doctor, but it wasn’t like he. You know, a afraid or terrified or anything that morning he went into the hospital shaking like a leaf.

Tonya: Oh, wow.

John: I had never seen it before. He knew something was whether he completely understood what was gonna happen, and obviously we talked to him about it, but he, he didn’t really, I, I, I don’t know how much he actually was able to comprehend, but he knew it was serious and, and this kid is shaking, and of course all I can do is hold him.

And try to reassure him. But of course, I don’t know it’s gonna be okay either. I assume it’s gonna be okay based on what everybody has said. But all I could do was hold him and say, you know, I’m here, daddy’s here, it’s gonna be okay. And then we get him into the triage and they, you know, give him some sedative and thing and he’s kind of chilling out.

And then they, couple hours later, they wheel him into the OR he is got his, you know, stuffed animal and stuff and, you know, he’s, by this point he’s kinda like, okay, whatever. Because they were able to give him something. Right. But I’m, I’m losing it. I’m losing it. And I remember I went to the chapel to pray, and I remember the, the prayer I, I, I prayed and it was, it was April, it was, I, I think it was like right after Holy Week.

And, and I prayed essentially what was almost like, uh, the, the, the high priestly prayer from Gospel of John, where, you know, Jesus is in the garden of Gethsemane. And, and he’s basically praying, Lord, um, you know, uh, as I am now kind of going on, you know, as I am now leaving my disciples, leaving my friends, you know, whatever you have given to me in this life, in this world, now pass on to them.

You know, give them that same blessing. Give them that same connection with you. Uh, give, give them the grace that you’ve bestowed upon me. Whatever you’ve given to me, give to them now. And likewise, I prayed, Lord, whatever you have in store for me, whatever you have saved up in heaven, whatever has not been revealed yet, I will surrender all of it.

If it means he can be healed and. I, I came out of there and, you know, they gave us like a little private, you know, waiting room. And probably 15, 20 minutes later, the surgeon comes down, you know, and, and he, he told us it was maybe gonna be a couple hours, I think it was like, less than 90 minutes. And very calm, very nonchalant.

Yeah. It went fine. And, you know, it’s all done. Yeah. We, we did this, they had to remove the C one vertebrae and clean up the other one as, as, you know, as he, as he put it. Um, but you know, this is a guy who had done this, uh, you know, a hundred times, right? He’s like, yeah, it, no, no big deal. And, and, and now of course, you know, I mean, I’m relieved, but everything leading up to that was serious enough because I really didn’t know how this was gonna turn out.

Uh, because again, it’s, it’s not like. He broke his thumb or Right. Okay. We need to give him some stitches. I mean, it’s, it’s brain surgery Exactly. Right. Essentially. So, um, but, you know, praise God, it, it did all work out and, um, he hasn’t been completely seizure free. He ha he’s had at least one. Um, but, um, for the most part, um, his seizure disorder is controlled and it hasn’t been an issue.

Tonya: Okay. Good, good.

 Before you went into the hospital that day, before you knew what, what that diagnosis even meant, is there anything that, that you think would’ve helped you if you had heard that from another parent first?

John: I don’t know if there was anything specific that might have helped us, but I, I will tell you this, um, and this is a big part of my platform, which is community and community and relationships with people who understand you, understand the dynamic you have raising a child with a disability and, and all of the things that go into that.

Um, I, I was still pretty new in my advocacy work. I had really only been at it maybe a couple of years, but in a very short time. I had developed a lot of wonderful relationships with people around the country, and I was floored. I was shocked. When I saw a, as I just would post things on social media or I would text several people I knew and whether it was, you know, friends of ours from our community or from his school, or from our church, or people that I worked with.

Again, in all of these different places, everybody came out of the woodwork. Everybody was reaching out, praying, how can we help you? Meal train, gift cards for meals, this, that or the other thing, whatever you guys need. And, and again, it, it was shocking to me the, the response we got. Um, so now what, what I wanna stress here is that, you know, when I share something like that, you know, the, the intention is not to say, okay, well, um, you know, you, you wanna have these tragedies because, you know, then all these people show up and then it’s like a big party and everybody celebrates.

It’s, it’s that, you know what, how scary is it? To go through that with your child and, and yeah. You know, we, we had some, some close family and friends, but you know, if, if people don’t really get what you’re going through, um, regardless of how close they are to you or how many you have, it’s not quite the same thing.

Whereas in our case, we had people who were parents of special needs and disability and, and people who had experienced with their own kids some pretty serious medical stuff. I mean, I have friends who have gone through medical things with their kids way, way more so than, than my own son. Um, you know, and, and those are the people that you want in your corner when you go through something like that because they will get you, they can relate on however many levels.

Um, and then it just means that much more when they show up to be, you know, supportive in that place.

Tonya: Well, I think, I think that’s, that’s a key point there because, um, and we, we talk about this a lot. We have to find that support group for ourselves. There. It’s, it’s so important that, you know, we are, we’re so focused on our children, especially when they’re younger or they’re in a medical crisis.

You, you don’t have enough spoons for everything else. You can just focus on what’s in front of you at the moment. But if you’ve already built those connections and you have that support, then as you say, you have someone who understands, and it might just be an email that they send you or a text message, but knowing that that person is praying for you or knowing that that person is just, they understand, you know, you don’t have to give them any words for them to know where you are.

It, it gives you a little more strength as you’re going in into those, those unknown situations. And my kids have not been through brain surgery, so I, I haven’t had to, to stress on that. But there, there are a lot of, of uncertainties as for any parent going in.

None of us know what we’re doing when, whenever we start parenting. But, um, but some of us face some other challenges that, you know, there, there, there may not be a parenting book written out there for, for anyone really, but special needs parents really don’t have one because those, those sudden turns that, that, that come outta nowhere.

Um, you know, to even know what questions to start asking it, it helps to have those other parents alongside you who have walked ahead of you. And this is why I appreciate you coming on and sharing your story because those that are finding this and listening to it will be able to, to take that encouragement and, and use that to go on and find that support.

Um, so, so last little question I wanna ask you here before we go on to our next section, um, during all this, so, so listeners, you’ve, you’ve already heard there’s a lot of confusion that’s been happening already in this family’s life, but then you and your wife at the time went into a season where you ended with divorce as well.

John: Um, that was not an easy time. To go through either, so as a special needs dad. So we already know you have some of this just carrying heavy on your shoulders at the time. What would you say to other dads that feel like they’ve kind of lost their place in this process? Yeah, and, and this is a, it’s, it’s a very deep, very wide question to, to try to answer because there are so many levels to it. But there, there are a couple of things that really stand out to me, um, in, in terms of dealing with, with divorce. But, but even, even if you’re not divorced, but you’re just going through these struggles in your marriage.

So what I’ll tell you is, you know, first of all, I, I go back to this foundation of community. There, there’s a story I like to tell. Um, I I, I tell it in my presentations and it’s called A Tale of Two Parking Lots, tale of Two parking lots. ’cause it involves two parking lots. So the reality is, is that my, my son’s mom and I wound up getting divorced.

We, we separated in the late 2019, uh, like towards the end of the year from when my son had his surgery. And then we were divorced in in 2020. Um, but almost 10 years earlier, summer of 2012 in, or you know, throughout the year of 2012, we experienced probably the most difficult, um, season of our marriage. It was certainly the worst season of life for me.

Basically, nothing was going right. Anything that could go wrong did in terms of whether it was getting the right support for our son or, or a school placement. We were still trying to figure out, I had a job loss. We were struggling financially, almost lost our home. Our marriage is hanging by a thread.

And what’s interesting is we, we weren’t believers. We, we were non-Christian. I mean, I was raised Catholic, my son’s mom was actually raised Jewish, so we were spiritual, but, you know, and more in the, as I like to say, the secular new age sense. So, um, but, but we, we decided we needed some community. So we, we did start attending a, a church and, and this particular church had a men’s group that would meet on Friday nights.

And I remember this one Friday night in the summer I was going there and I, I was early, so I sat in my car. I made a couple of phone calls. I called two of my oldest friends, one from high school, one from college. Um, they were married, no kids, and they certainly didn’t know anything about having a kid with a disability.

And they knew that there was some stuff going on, but they didn’t know that much. And I kind of laid it all out there for them. And, um, and they basically were like, look man, we, we love you. We don’t know what to tell you. We, we don’t know what to do. And, and one of my friends said, you know what, if it were me, I’d probably just walk.

And I’m like, well, I, I, I can’t do that. And, you know, of course they were like, well, we’re here for you. Just kinda let us know. So I go into this men’s group.

 They kind of knew a little bit of what was going on, but not everything. And then I get into my, my spiel and, and essentially the whole room is silent.

For maybe a minute, and then all of a sudden the group leader chimes in and says, boy, that’s really tough to hear. We’re, we’re really sorry. But what you need to know is that it’s gonna be okay. Now here’s the thing. Do I know in the grand sense of, you know, being a, again, a, a believer in Christ that everything’s gonna be okay?

You betcha that’s not what I needed to hear in that moment though, I needed guys to come around and you know what, Hey, what can we do? How can we help? Um, can I at least take you out for coffee or a meal or something? You know, what, what is it that you’re really needing? And, and I realized that I didn’t have community.

And, and so a lot of my advocacy work, you know, all the way back then, the seeds were planted to say, I, I need to get me some community. I need people who think like me. Now, eventually what wound up happening is, you know, my wife and I found my ex-wife and I found a really strong marriage counselor. She helped us work through a lot of stuff.

We did wind up finding a really good school district for my son that we moved to that area, found a really strong church, you know, and all of these things. Um, but what, what I also saw happen though, um, kind of in that particular season of life was that, um, I, I had kind of lost a sense of myself, right? So one of the things that I was struggling with personally was my son’s mom, who was always very good with managing things, the appointments, the scheduling, the doctors, the therapists was always very good at that.

Um, I didn’t do any of that, not because I didn’t wanna do it, but because she preferred to do it and she was good at it, and that was her, her gifting, that was her thing.

 So what did I do? What did I bring to the table? What did I provide? And that’s also where as I kind of moved out of that season, as I described, the advocacy work was something that I saw that I was good at.

And it was something that not only provided a benefit to our family in terms of the resources I was connecting with, but then I could also be a resource and a blessing to other people and families like me. So by the time we actually got to the place of divorce, and, and I’m, I’m gonna tie it up with that second part of that, um, parking lot story because, um, the, the second part of that story happened in late 2019.

So it was Black Friday, the day after Thanksgiving. You know, it’s normally a big shopping day. Um, it was never really our thing to go shopping or whatever. Um, but I found myself just like I did back in 2012. I found myself sitting in my car in a parking lot, getting ready to make some phone calls, because not even a half an hour earlier, my then wife had just handed me divorce papers out of the blue.

Um, so I was totally blindsided. I was not expecting it. Um, it was basically just, I don’t love you anymore. Here you go. Okay, what do I do? Now, here’s the difference though. In 2012 when I sat in that parking lot, I, I didn’t know who to call. I, I called the, the guys I knew to call because they were my friends.

They had nothing for me. Now, the difference was I had dads of special needs that I could call, married, divorced. I in. In fact, the first guy I called, believe it or not, was a friend of mine. He’s a special needs attorney, also has a son with a disability and was also divorced. And or, and he had been remarried by that point.

And I’m like, you’re perfect. And he was the one who actually introduced me to the attorney I actually wound up abusing in the divorce, who was great. Um, you know, but, but he was exactly the, the, the first right guy, because he could be honest with me, supportive, but, but also tell me exactly what I needed to hear in that moment.

And then of course, I had other dads of special needs, married, divorced, you know, close friends. Um, I had pastors, I had other, you know, advocates or, you know, people in disability ministry. I had all these people that I could lean into and, and just like, as I kind of described the way that people showed up out of the woodwork when my son had his brain surgery, it was really like that this time.

Um, I, I look back at it now and I’m actually kind of amazed at how many people showed up from everywhere, you know? And again, it could be as simple as, as a text or, or a message or a phone call, or, you know, taking me out for a meal. Or coffee to talk things through. I, I even had a friend who was a counselor who actually gave me a free session and was like, listen, I’m just gonna give this to you so we can talk some things out.

So, so there were so many ways that that showed up. But again, I wouldn’t have had any of that if I didn’t step out in faith and say, you know what? I, I think there’s something for me here. I think there’s something for me in terms of what I can give my family with, but also what I can give to others with.

If I didn’t embrace that, then there’s no way that, you know, that second experience sitting in that car would’ve been any different than, than the first time and not having those resources at all.

Tonya: John, thanks so much for being so transparent about the “Tale of Two Parking Lots” and the reality of navigating marital strain while parenting a child with such high support needs. And listeners, if you are currently in a place where your marriage feels heavy, I want to remind you that you’re not alone.

I know this is a difficult conversation. It’s such a necessary one as a help to you. I’ve included a link in the show notes to my previous conversation with Todd and Kristen Evans. They work specifically to minister to families who are trying to preserve their marriage, and they have some incredible words of guidance for those navigating relationship stress within the disability community.

Please take a moment to listen to that interview if you need that support right now. Next week, John and I will be returning to pick up where we left off. We’ll be discussing the role of faith, the importance of building a supportive community and what true inclusion looks like in our churches. Make sure you’re subscribed so you don’t miss that continuation.

Thanks for listening, and I’ll see you then.

Frequently Asked Questions (FAQ)

The post Episode #147: The Tale of Two Parking Lots: Navigating Marriage and Crisis with John Fela (Part 1) appeared first on Water Prairie.

Does your child spend their day in the general education classroom, but you suspect they aren't truly included? In this episode of Water Prairie Chronicles, we are unpacking the dangerous myth that "proximity is a program." Just because a student is physically in the room doesn't mean they belong. Join me as we break down the difference between mainstreaming and true inclusion, explore the transformative power of a sensory audit, and learn how to write IEP goals that prioritize social connection over mere compliance. Let’s help your child find their place on the dance floor.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Stop walking into IEP meetings feeling like a guest. Discover how to move your child from the “desk in the back” to a place of true belonging in the classroom.

In this episode, IEP Coach Tonya Wollum breaks down the crucial difference between mainstreaming and true inclusion. Using powerful personal stories and expert insights, she explains why physical presence is only the first step toward your child’s success.

There is a powerful saying in the advocacy world: “Proximity is not a program.” It means just because your child is within ten feet of their non-disabled peers doesn’t mean they are being included.

True inclusion isn’t just about where the desk is; it’s about whether the school has changed the “box” to fit your child. This is the difference between Mainstreaming—where we expect the child to keep up with the class—and True Inclusion, where the supports are brought directly to your child so they can participate meaningfully.

Inclusion strategist Vernā Myers has a beautiful way of putting this: “Diversity is being invited to the party; inclusion is being asked to dance.” As an IEP coach, I take that a step further: Belonging is knowing all the songs.

Often, the barrier to inclusion isn’t a child’s disability—it’s the environment. Sometimes, a child “fails” inclusion because the room is physically overwhelming.

If you’re considering if the general education classroom is a good fit, consider asking your IEP team for a Sensory Audit. This concept is supported by organizations like InclusionED. It’s a simple process of asking: Is the buzzing of the fluorescent lights or the cluttered walls making it impossible for your child to focus?

When we identify these triggers, we move from “managing a behavior” to “supporting a student.” Whether it’s requesting glare-reduction for a child with a visual impairment or allowing a hat for a student sensitive to skylights, these environmental changes are key to belonging.

Are your child’s IEP goals all about compliance, or are they about connection? Instead of a goal that simply says “Student will sit quietly,” look for goals like: “During recess, the student will initiate a shared activity with a peer.” We can actually write Social Connection into the IEP. If you’re feeling overwhelmed, you can download my Free IEP Meeting Checklist with 15 Must-Ask Questions to help you walk into that room feeling like the CEO of your child’s education.

Resources Mentioned in This Episode

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

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

(Recorded February 24, 2026)

Full Transcript of Episode 146:

Hi everyone, welcome to the Water Prairie Chronicles, a podcast created to support parents who have children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here. If you’re a parent navigating the world of special education, I know how heavy that can feel. Today, I want to talk about a phrase I often have parents tell me: ‘My child is in the general education classroom.’

Usually, a parent tells me this with a mixture of pride and relief, and it’s usually after their child has spent time in a special education class and has been graduated to spending time in the general education classroom with their same-age peers. It may be for part of the day, or it may be for the full day. Sometimes it’s said by a parent whose child has always been assigned to the general education classroom from the start. But then, in either case, as we dig deeper, we realize that while their child is physically in the room, they are sitting in a separate desk in the back with a 1-to-1 aide or para professional, doing a completely different activity than their peers. Friends, we need to talk about why this is not what you might think.

There is a powerful saying in the advocacy world: ‘Proximity is not a program.’ It means just because your child is within ten feet of their non-disabled peers doesn’t mean they are being included.

True inclusion isn’t just about where the desk is; it’s about whether the school has changed the ‘box’ to fit your child. This is the difference between Mainstreaming—where we expect the child to keep up with the class—and True Inclusion, where the supports are brought directly to your child so they can participate meaningfully.

Inclusion strategist Vernā Myers has a beautiful way of putting this. I love this quote. She’s famous for saying, ‘Diversity is being invited to the party; inclusion is being asked to dance.’ As your IEP coach, I want to take that a step further for you: Belonging is knowing all the songs. I want your child to not just be ‘at the party’ of their classroom—I want them to feel like they belong there.

So, how do we move toward belonging? Often, the barrier isn’t your child’s disability—it’s the environment they are placed in. Sometimes, a child ‘fails’ inclusion because the room is physically overwhelming.

If you’re considering whether the general education classroom is a good fit for your child, I want you to consider asking your IEP team for a Sensory Audit. This is a concept supported by organizations like InclusionED, and I’ll put the links for these in the show notes for you. It’s a simple process of asking: Is the buzzing of the fluorescent lights or the cluttered walls making it impossible for your child to focus on the lesson? When we identify these triggers, we move from ‘managing a behavior’ to ‘supporting a student.’ My family had to work through this for my daughter all through school because she is visually impaired. Sometimes you may find requesting a Sensory Audit is helpful for other reasons. For example, when my son was transitioning to middle school, he was very sensitive to bright lights, and his classrooms all had skylights that caused a bright glare during the middle of the day. His IEP team added an unusual accommodation for a child who didn’t have a visual impairment; he was allowed to wear a hat or sunglasses if the glare was too much for him. It was simple, but it fixed the problem.

We also need to look at the goals in that IEP. Are they all about compliance? Or are they about connection? Instead of a goal that simply says ‘Student will sit quietly,’ let’s look for goals like: ‘During recess, the student will initiate a shared activity with a peer.’ We can actually write ‘Social Connection’ into the IEP.

I know this is a lot. If you’re sitting there thinking, ‘I know my child deserves more, but I don’t know how to ask for it,’ I want you to know you don’t have to do this alone. This is exactly what I do as an IEP Coach. I help you turn ‘proximity’ into ‘belonging.’

If you’d like to sit down and look at your child’s specific situation, I’d love to offer you a Free Strategy Session. We can talk about your top concerns and start building a roadmap for you. Just head over to waterprairie.com/iepcoach to sign up. Let’s get your child ‘on the dance floor’ together.

And if you’re feeling overwhelmed by the thought of going into your child’s next IEP meeting, I have a resource to help. You can download my Free IEP Meeting Checklist with 15 Must-Ask Questions to help you walk into that room feeling like the CEO of your child’s education. You can find that at https://waterprairie.com/iepmeetingchecklist/

Next week on the podcast, we are taking this conversation a little bit further. We’ve talked about belonging in the classroom today, but what about our communities of faith? I’ll be joined by a special guest, John Fela, to discuss inclusion in the church.

Have a great week, and I’ll see you next time!

The post Episode #146: Proximity is Not a Program: Moving from Inclusion to Belonging appeared first on Water Prairie.

Learn the "Draft IEP" secret to stop predetermination. Get Tonya Wollum’s expert scripts for requesting IEP drafts and auditing goals to lead your child's next meeting with confidence.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Does walking into an IEP meeting feel like stepping onto a train that’s already left the station? Many parents are handed a completed, stapled document at the start of their meeting, leaving them no time to process data or offer meaningful input. In this episode, Tonya Wollum reveals the “Draft IEP” secret.

Learn why receiving a draft in advance is your legal right to “meaningful participation,” how to handle school teams that say they “don’t do drafts,” and why the word Predetermination is the most important term in your advocacy vocabulary. Whether you live in a “Gold Standard” state or one with no strict deadlines, Tonya provides the exact scripts and strategies you need to audit your child’s IEP goals, data, and “Present Levels” before you ever sit down in those tiny plastic chairs.

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

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

(Recorded February 19, 2026)

Full Transcript of Episode 145:

[Begin Intro music – Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/]

Tonya: Hi everyone, and welcome back to the Water Prairie Chronicles. Last week, we kicked off Season 5 talking about changes and new beginnings, and today I want to dive straight into one of the most powerful tools you have in your advocacy toolkit—and it’s one that schools don’t always tell you about.

This topic is for you if you have a child in special education in the United States or if you’re attempting to get your child on an IEP (an Individualized Education Program)

Imagine walking into your child’s IEP meeting. You sit down, and the team hands you a 30-page document that is already stapled, dated, and looks… well, finished. You feel like the train has already left the station and you’re just there to wave it goodbye.

When my children were in elementary school, I would be either given a copy of their draft IEP at the start of the meeting, or the team would project the document onto a SMART board as we worked through the document. They would usually explain that this was not the official IEP until after the meeting that day. I had no idea that there might be other options, but I do remember being tired by the end of the meeting after they had read the entire document to me word for word!

I know many of you can relate to that story and may have experienced even worse situations. Today, I’m going to teach you the “Draft IEP Secret,” so you never have to feel that way again.

First, let’s get the legal jargon out of the way. Under the federal law called IDEA, the Individuals with Disabilities Education Act, your school is allowed—and often encouraged—to come to the meeting prepared. This often takes the form of a Draft IEP.

Now, here is the secret: A draft is a proposal. It’s not a decision. There is a very important legal term you should be aware of called Predetermination. This is when a school decides what services or placement your child will get before they ever listen to your input. Predetermination is illegal!

So, when a school prepares a draft, they are legally required to make it clear that these are just “preliminary recommendations” and not the final document.

Just like they used to do when I would go into the meeting and they would explain that to me.

Now, I often get asked: “Does the school have to give me the draft before the meeting?”

The short answer is: Federally, no. IDEA doesn’t mandate a specific timeline for drafts. However, today, we live in a “leave it to the states” kind of world when it comes to education.

Every state has its own spin on how they present this information to parents. For example:

Here’s a Pro-Tip: Even if your state doesn’t require it by law, participation is a federal right. If you can’t read a 30-page document in 30 seconds at a table, you aren’t “meaningfully participating,” and having it read aloud to you during the meeting is, in my opinion, a waste of time because you just can’t digest that much information and respond appropriately after hearing it for the first time.

By the time my children were in middle school, their IEP teams stopped having anything prepared before the meetings. I asked them once if I could get the information before hand because I saw the value of having a draft ready since much of the information such as data collected or their present levels would not be changed during the meeting, and I was told that at that time in NC they were not allowed to pre-fill any of the sections on the IEP until the meeting occurred. This meant much time was wasted with someone having to copy and paste information into the different fields of the document. I share this story with you because you should be aware that policies will change from time to time, and you should be ready to ask questions and help find a mutually beneficial solution so you and your child’s IEP team can make the most of your time together.

I’ll share what my solution was in a minute, but first, you might be asking, “What do I do if I ask for a draft and the school says, ‘We aren’t allowed to create a draft,’ or ‘It’s against policy ‘?”

First, I would ask to see that policy in writing. If you’ve worked with me at all, you know I always want everything in writing, but, spoiler alert here, it usually doesn’t exist.

If they refuse, here is your script. Simply send them an email saying,

I understand you want to wait for the meeting to collaborate. However, to be an equal member of this team, I need time to process the data so I can contribute. If I receive the document for the first time at the table, we may need to schedule a follow-up meeting so I can review it properly.

Nothing gets a draft sent faster than the threat of a second meeting! Especially if your meeting is coming up near the end of the year, when every other child is going to be having a meeting. There’s no time in their schedule to meet twice.

My solution back when my child’s middle school teams were not allowed to have the draft ready when we began the meeting was to ask each specialist to send me their input and data via email before the meeting. It got to the point that they loved the idea so much they would send me their “official” wording and ask me to send them my input before the meeting, so they were making suggestions based on what I wanted to see. This was the first time I realized how much of a voice I actually could have in my children’s education program, and it helped to create a much better working relationship with each of the specialists who worked with my children. Our entire relationship changed for the better, and no, they didn’t take my input word for word, but they did listen to me and incorporate the ideas into their reports.

OK, I’m getting off topic a little. Let’s get back to that draft IEP.

Once you get a copy of it in your inbox or in your child’s backpack, like I often did, don’t just look at the service hours. As an IEP coach, I typically look for three things right away:

Remember, you are the only person at the IEP table who is an expert on your child for their entire life. The school staff are experts during the school day for one school year, but you are the expert forever. You also know what happens outside of the classroom. Use the IEP draft to find your voice.

If you’re looking at a draft right now and your head is spinning, this is part of what I do as an IEP Coach. I help you spot the red flags before you ever sit down at the IEP table.

So, what are your Next Steps?

Let’s make this the year you walk into your child’s IEP meeting feeling like the CEO of your child’s education. I’ll see you next week!

[outro music fades – 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/]

Frequently Asked Questions (FAQ):

The post Episode #145: The “Draft IEP” Secret: How to Take Control of Your Meeting Before It Starts appeared first on Water Prairie.

In this episode of Water Prairie Chronicles, Tonya returns after a two-month hiatus due to illness and discusses season five with a new audio-only format. The episode includes personal updates, such as coping with the flu and helping a son move to a new college. Tonya also shares insights on upcoming changes related to digital accessibility laws and teases a new comprehensive digital training tool aimed at helping businesses and community groups be more inclusive. Listeners are encouraged to provide feedback and subscribe for updates.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this episode of Water Prairie Chronicles, Tonya returns after a two-month hiatus due to illness and discusses season five with a new audio-only format. The episode includes personal updates, such as coping with the flu and helping a son move to a new college. Tonya also shares insights on upcoming changes related to digital accessibility laws and teases a new comprehensive digital training tool aimed at helping businesses and community groups be more inclusive. Listeners are encouraged to provide feedback and subscribe for updates.

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

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

(Recorded February 11, 2026)

Full Transcript of Episode 144:

Tonya: Hi everyone.

Welcome to the Water Prairie Chronicles, a podcast for parents of children with disabilities. If you’re checking your podcast player and thinking, wait a minute, didn’t she go quiet around Thanksgiving? You’d be exactly right. Today is February 13th, and for the first time in over two months, I’m back in my office and sitting in front of the microphone.

Honestly, I’ve had my hands full. After a week in northern Maine, right after Thanksgiving, I brought home that nasty flu bug and shared it with my family as an early Christmas gift. The joke was on me, though, because I was the first to get it and the last to get over it. It’s one of the downsides of having an autoimmune disease like MS.

It takes my body a long time to recover from any illness or injury. Thankfully, we were all clear to celebrate Christmas with our extended family, and we didn’t pass the virus on to anyone beyond our immediate family. It did remind me, however, just how challenging our lives can get. I know many of you have had those sleepless nights of caring for your kiddos when they’ve been ill.

Between the joy of fighting the flu as a family and helping our son with a big move to a new college, the podcast and coaching had to wait. Thank you for still being here. It feels really good to reconnect again.

Today I’m kicking off season five for the podcast, and things are gonna look, or rather sound, a little different. This season, the podcast is going to be audio-only. I want this to be a place where we can have those heart-to-heart conversations you can take with you on a walk or in the car. If you usually listen to the episodes on YouTube, you’ll need to either go to the Water Prairie website or search for the Water Prairie Chronicles on any podcast platform.

New episodes are gonna be released on Friday mornings this season, and I’m shooting for around 6:00 ET. But give me a week or two to to get that finalized.

I’d love to hear your thoughts on the shift. What topics would you want me to dive into this season? I’d like to hear your thoughts on this shift.

What are some of the topics that you’d like to hear more about? Is there anything that’s really burning that you don’t know much about and you’d like to learn more about? Are there any specific guests that you’d like for me to invite to come on?

I’m talking with several guests that I’ve already lined up who will be joining me in the coming weeks, and I’d love to hear your input on what you’d like to hear more about. If you have any ideas, drop me a note. Send me an email. Um, you can send it to [email protected].

That way I’ll see it right on the guest input there.

Anyway, along with the podcast changes, I’ve decided that I’m gonna focus on some specific teaching topics for the videos that I post on the Water Prairie YouTube channel. So if you are used to going to Water Prairie for everything. There’ll be a slight adjustment here, but I think you’ll, you’ll like the streamlining a little bit better.

What I’m gonna be putting over there will be more of an education hub. I wanna focus on parent education and training, and I’ll also have some of the special guest segments there, too. Depending on who I’ve been interviewing. I’d like to highlight some of the specific areas of our conversations and not post the full podcast episode on YouTube.

What I’ve found over the last couple of years is that most of you who listen to the full podcast are listening to the audio, and the YouTube videos, you’re not watching those all the way through. So I thought, let’s make the most of what I’m putting the time into, so that I can focus on content that you want to see in video format.

So this is what’s driving the change there. So if you haven’t done so, be sure to go to youtube.com/@waterprairie and subscribe. That way, you’ll be notified, or you should get some indication on YouTube when new videos are being posted. And remember, the, the audio part will be coming out on Fridays, so you’ll have that, the newsletter, if you’re not subscribed to that yet, we’ll have the links and comments about what has come out each week.

So that’s probably your best place to go. And you can either subscribe to Water Prairie on Substack, or you can go to waterprairie.com and fill out the form to join the email list. Another thing that happened while I was away was I wasn’t just resting. I actually wasn’t resting much at all ’cause I was helping my son get adjusted to his new school and apartment.

But I was also learning, did you know that we’re sitting on the edge of some massive shifts in the law? Specifically, the Department of Justice has set a new ADA Title II deadline for digital accessibility, and for many state and local agencies, that deadline is April of 2026, so it’s coming up soon.

Imagine that you are trying to navigate a website that isn’t accessible when you’re looking for resources for your child. For example, if you are blind or visually impaired, you need to use a screen reader. If the website’s not accessible to a screen reader, that information’s not accessible to you.

If you are deaf and hard of hearing, and there’s a lot of video with auditory that’s on the website. And there’s no closed captions for it. You don’t know what they’re saying. So these are just two examples. There’s a lot of other ways that accessibility needs to happen. If you have a child who’s visually impaired, you know how frustrating it can be whenever a PDF or a document can’t be enlarged because it becomes too grainy, and then your child no longer has access to something.

So these things should be better once different organizations begin complying with the the new guidelines. So I’m excited about that. For that reason, you should be seeing more websites becoming more compliant as these changes are being made.

And, um, on a personal side of it, I. I’ve been diving into this more.

One, I want the Water Prairie website to be more accessible, and I still have a ways to go. If you wanna send me feedback on where I’m still missing something, please do, because that’s gonna be my easiest way to figure it all out. But if you’ve listened to the podcast for a while or if you’ve. Um, gone through and seen some of the videos.

You may have met my daughter Emily already. Emily is in college right now, and she’s currently working on her certification as an accessibility analyst. And watching her go through the process has been really eye-opening for me, and not only understanding that there’s a need there, but understanding that there’s a certain way that we need to be able to comply.

And so she’s teaching me a lot as she goes and. We’ve talked a lot at home about what businesses, schools, and even government agencies are required to do to ensure that their spaces are truly open to everyone, and there’s a lot to unpack there. So this got me thinking. Beyond just what I wanna do with Water Prairie.

We have a lot of churches. We have small business, we have community groups, you know, scouting groups that are out there. They want to be welcoming. They want to be accessible to everyone, but they may not know where to start, and they don’t have someone like Emily in their office to tell them what to do.

So I’ve been quietly working on a project that I’m excited to announce. Probably a little early right now to announce it, but I’m gonna tell you a little bit about it. Um, soon I’ll be launching a comprehensive digital training tool that’s designed specifically for business teams and community volunteer groups.

Whether you’re a church greeter, a retail manager, a classroom teacher, or a community volunteer, this tool will give you the practical boots-on-the-ground training to create an environment that isn’t just compliant, but genuinely welcoming for people with disabilities. And I’m gonna share more about this as we get closer to launching it for the public, but I just wanna let you know that it’s coming.

I’m excited about it. If, if you can’t tell in, in, in my voice, I, I’ve had fun getting this put together, and I’m still working out the final pieces of it, trying to figure out whether I can actually make this a physical product that you can purchase or if it’s something that you’ll need to print out at home.

I’m figuring all of that out. But, um, together, I think this is a great way that we can foster some connections in our community.

So. I’m gonna spend this season talking about the IEP table, the church pews, and the boardroom.

Because inclusion isn’t just a checkbox, it’s a culture that we’re gonna build together. Let’s work towards creating a world where every child and family feels seen and valued. If you haven’t done so, go ahead and subscribe so you don’t miss next week’s episode.

Keep an eye on your inbox for the link to that training tool once it comes out. If you’re not already on the mailing list, you can sign up for the weekly newsletter at waterprairie.com. I’ve really missed connecting with you all, and I can’t wait for what’s ahead. Let’s make season five the best one yet, and I’ll see you next week.

The post Episode #144: Season 5 Kickoff: Flu Bugs and Big Changes appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this episode, Paralympic swimmer and blind college student Evan Wilkerson explains real campus accessibility features like braille signage, accessible vending machines, safe crosswalks, and how he’s adapted to college life and campus navigation without sight.

This is Part 3 in my series with Paralympic swimmer and blind college student Evan Wilkerson.

As an IEP Coach and parent, I’m looking at Evan’s experience through the lens of transition planning for students with visual impairments and other disabilities, so parents can better understand what to look for in a college campus and how to prepare their teens for independence.

In this part of our conversation, we focus on:

Watch the full Evan Wilkerson series on YouTube:

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

Evan Wilkerson is an accomplished US Paralympic Swimmer, Bronze Medalist, and college freshman from North Carolina.

Competing in the S12 classification for visually impaired athletes (due to Leber’s Congenital Amaurosis), Evan achieved a career milestone by winning a Bronze Medal in the 100-meter backstroke at the 2025 Para Swimming World Championships in Singapore.

He now attends Ouachita Baptist University, where he balances competitive swimming with his studies. Evan navigates college life and training with increased independence, thanks to his guide dog, his new partner. Evan plans to continue his swimming career while pursuing a degree for full-time ministry.

(Recorded October 8, 2025)

Full Transcript of Episode 143:

Evan: As a parent, you’re going to have to give them their independence. You can’t do things for them. They have to do things for themselves.

INTRO: In today’s episode, Evan shares what that actually looked like for him starting college as a blind student, and training for the next Paralympic Games.

Welcome to the Water Prairie Chronicles. If you’re new here, I’m Tonya, and this is part three of my conversation with Evan Wilkerson, a blind college freshman and world championship medalist.

In this episode, we’re jumping into the part of our talk where Evan explains how he started college, the supports he does and doesn’t use, and how he’s planning his future as a Paralympic athlete.

If you’re a parent of a child with a visual impairment or a disabled teen, I want you to listen for the quiet ways his independence was built over time.

Let’s join the conversation.

Tonya: You’re a college freshman and a world championship medalist. How do you introduce yourself to people?

Evan: Honestly, I really gloss over, um, a lot of the world championship stuff. I, I, I don’t want to be seen as, you know, just this one thing. You know, a lot of the times I’ll, if someone asks me who I am and, uh, what I do, you know, I say, Hey, you know, I’m Evan.

I, I swim here for college at, uh, OVU, and I’m a Christian Studies and sports management double major. Um. You know, if they, they know me or they’ve seen me on social media, yeah. They know I’m a, you know, Paralympian, world Championships medalist, all this other stuff. But, um, you know, I think it’s really bad to just put your identity in all of those things.

And so, you know, not like I’m gonna hide it, but it’s also not gonna be the first thing I introduce myself as.

Tonya: Good answer, by the way. So, what was your biggest fear about leaving home, um, for college at, well, I, the question was as a visually impaired athlete, but that really doesn’t matter.

What was your biggest fear about leaving home and going off to college?

Evan: That’s a really great question, and honestly, I think I’d have to say that, you know, I wouldn’t be prepared to get around campus or to. You know, create a, a friend group or anything like that, which, uh, you know, uh, as we talked about earlier, both of those things were quickly, quickly dispelled from my mind.

Um, navigating this campus is very easy, especially with Titus. And then having kind of coming into campus already as part of a team is tremendously helpful in establishing those social connections. And, um, you know, even though. I, I, I don’t, I wouldn’t consider myself a huge extrovert. I, I know how to be outgoing, and I’m not afraid to just walk up to some random person and introduce myself and start talking.

Um, and so that’s helped me out a ton as well.

Tonya: I don’t see you hiding out in your dorm room and never going anywhere.

Evan: No. Not at all.

Tonya: So in regards to the academic life, what supports are you plugging into that the school has to offer for you?

Evan: Honestly, not much.

Um, a lot of the things I’ve come across have been very easy to make accessible, either by me or by my professors. Um. You know, they just send me, if it’s a paper assignment, they just send it to me in a Word doc. I fill it out that way, email it back to ’em. Um, we did have a geography test, which was interesting, um, because it was 152 locations, no, 252 locations.

I apologize, um, that you had to know where they were. Um. And of course labeling a map was gonna be a little difficult for me. And so we did it. I had to describe everything in text. It was pretty brutal. But, uh, I ended up doing really well on that. Um, so, you know, there’s always a way to figure out this sort of stuff out, especially, uh, when the professor is willing to work with you and willing to kind of think outside the box a little bit.

Tonya: Great. Are you using extended time or private setting or anything like that?

Evan: Not as of now, no. Um, I find myself very, very easily able to keep up with the workload. Um, and for quizzes and things, it’s, I’m a, I’m a fast typer and a fast listener, so a lot of the times, by the time, you know, a normal sighted person is halfway done I’m, you know 70, 80% of the way done.

Uh, just because I can, I can type quick and I can read quick. Uh, of course if I had to take a math class, it would be a whole different story. But, um, I haven’t really found myself in need of anything like that.

Tonya: Did you, did you register with disability services, though, or whatever they call it at the school?

Evan: Um, just to have a safety net and then also just to get some stuff made accessible around campus. Uh, we’re missing some truncated domes in some pretty key places. Uh, and so they’re getting those put in for me as well as kind of just simple things like getting room numbers for some of the older buildings, um, and labeling the drink machines and that kind of thing as well.

Tonya: Nice. So it, it sounds like across the board they’ve embraced you being there and working with you.

Evan: Oh yes, they are fantastic.

Tonya: Listeners, the school that he’s in is not a 5,000-student school, so wherever your child ends up going to school, the size of the school should not keep them from being able to work with them.

Evan: No, I shouldn’t. We are 1,500 students, and I think they have probably done a better job than what ___ College did for my sister. And of course, that is a huge school, so I think the, the size of the school isn’t really going to impact the school’s ability to make things successful or not.

Tonya: All right. So what are your goals for the next Paralympic cycle while you’re finishing college?

Evan: So this Paralympic cycle, um, is gonna be pretty key. Uh, a lot of it’s going to hinge on if I get classified this year or not. Um, and you know, if I get classed down as an 11, uh, the goal is to really get as big a lead in the a hundred backstroke as I can. Go into LA uh, with. You know, plans to podium in as many things as I can, um, just because that’s gonna be more my level of vision, people I’m racing against.

And so it’s gonna be a really equal playing field. And, uh, you know, I’m feeling pretty confident in my training, in my schedule, uh, in the good people I have here to support me. And so going into that, I, I’m feeling very good if I get put down as an 11. Uh, if I’m still at 12, same thing. Um, it’s gonna be a lot harder because a lot of people in my classification don’t even use tappers, um, internationally, I believe I’m the only swimmer who uses a tapper, and so it we’re gonna have to work a lot harder in the race itself.

Um, but the goal in LA is still to make the podium in as many things as I can, whether that’s, you know, gold, silver, or all bronze. Uh, in my book, podium is Podium. And so that’s kind of generally my, uh, my general outline for the next few years. Uh, of course we have Pan Pacific next year and World Championships in 27, but, uh, I don’t, I haven’t really sat down and, uh, established complete goals for those yet.

Tonya: Right. And for school, when does the season begin?

Evan: Um, so the season started, uh, we pretty much start right off the bat and, uh, the regular season goes all the way through. Um, I believe it’s March, and then I’m of course, being on a national team. I’m going to keep training, uh, just kind of keep going in that way, whether that’s with my college coach or going back home to my club team.

I’m not sure yet, but, uh. You know, I’m more than likely not going to be on the scoring team for anything like conferences here. So, you know, I’m really here to train, to have fun, to be able to support my teammates, um, you know, show up to these meets and throw down some fast swims to build confidence in my racing ability.

And then also gain that racing experience, because that’s of course very important.

Tonya: Yeah the times are different, listeners, if you haven’t thought about the fact of waiting for a tap is a huge amount of difference in how long it takes to make a turn, even. Um, so it’s not an apples-to-apples competition between a sighted swimmer and a blind swimmer.

Um, how do you want to use your platform as a student and as an athlete?

Evan: I’ve really been thinking about that a lot recently. And, um. You know, being at a Baptist school, I’m really growing in my faith a lot. Um, and we had a really unfortunate event last month with the assassination of Charlie Kirk and, you know, you can say what you will about him politically, but at heart I think he was an evangelist.

And you know, he left a lot of young men like myself with the tools and the knowledge and the experience, um, that he was able to pass on through, you know, his teaching and his videos and all the things he was able to do. And I think that, you know, as men, we need to, you know, he left big shoes. I think it’s gonna take a lot of people to fill them.

And, uh, if I happen to be one of those people, uh, you know, I, I would be honored to be able to go out and spread the gospel and use my platform for that purpose as well as just, you know, spreading, spreading hope. It doesn’t matter where you are in life. Um, you know, look at me. I’m, you know, I’m blind from North Carolina, a town outside of Raleigh that no one’s probably ever heard of much.

Uh, and I’m, you know, I’ve made it to this international level. I’m successful in college. Um, you know, it really doesn’t matter where you are in life. If you have the, the goal and the drive, and you’re willing to find the tools and adapt and have a purpose and be willing to take huge, massive risks and, you know, but be reasonable with them and know that they’re gonna pay off for you as much as they can.

Um, you know, you’re going to be able to do just fine in this world.

Tonya: I like that. And I appreciate you mentioning Charlie, too, in that. The, um, so final question before we close up this.

How in, in one sentence, what would you tell parents who worry about their child’s independence?

Evan: As a parent, you’re going to have to give them their independence. You can’t do things for them. They have to do things for themselves.

OUTRO: I hope Evan’s story encouraged you, especially that final reminder, that WE can’t do independence FOR our kids.

As parents, our job is to give them the space, tools and expectations they need so they can do hard things for themselves.

If you missed parts one and two of my conversation with Evan, where we talk about his vision loss, burnout, getting his guide Dog, Titus, and winning a World Championship medal. I’ll link those for you in the show notes so you can go back and watch those next.

If this episode helped you, share it with another parent who’s wondering what’s possible for their child, and subscribe so you don’t miss more stories like Evan’s. And in the comments, tell me, what’s one area where you’re working on giving your child more independence right now?

I’ll see you next time.

A1. The best college preparation for visually impaired teens actually starts long before move-in day. Look for everyday ways your teen can practice independence at home: managing their own schedule, communicating with teachers, advocating for accommodations, handling money, and traveling familiar routes with a cane or guide dog. In the episode, Evan shares how these skills made starting college as a blind college student feel challenging, but not impossible.

A2. Every campus is different, but Evan’s experience shows that a blind college student can live a very typical college life: attending classes, hanging out with friends, eating in the dining hall, and training as an athlete. The biggest differences are usually in how they navigate campus, access materials, and communicate with professors. With some planning and self-advocacy, visually impaired college students can be successful both academically and socially.

A3. Most colleges have an office for disability services in college that can provide accommodations like extended test time, electronic versions of textbooks, note-taking support, and accessible formats for assignments. In the episode, Evan talks about registering with disability services as a safety net, even though he didn’t always need every accommodation. The key is teaching your teen to ask for what they need and to communicate clearly with professors before problems arise.

A4. Yes, a guide dog in college is typically allowed as a service animal, not a pet. That means the student has the right to have their guide dog in classrooms, dorms, and most campus spaces. Parents can help by making sure their teen understands how to care for the dog independently, follow campus policies, and educate roommates and friends about how to behave around a working dog. In Evan’s story, his guide dog Titus is both a mobility tool and a big part of his daily routine.

A5. This is one of the hardest parts of raising independent disabled teens. As Evan says in the episode, “As a parent, you’re going to have to give them their independence. You can’t do things for them. They have to do things for themselves.” A good rule is: support the planning and problem-solving, but let your teen handle the actions whenever it’s safe. That might mean you talk through how to email a professor together, but they send the email themselves.

A6. In most cases, yes—college for visually impaired students is absolutely realistic with the right preparation and support. Your teen may need accommodations, orientation and mobility training, and extra practice with technology like screen readers or Braille displays. But Evan’s journey as a visually impaired college student and Paralympic swimmer shows that disability doesn’t have to limit big goals. It just changes how you and your teen approach them.

The post 143. Blind College Student & Paralympic Swimmer on Campus Accessibility & Safety appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Meet Titus – the golden retriever who transformed Paralympic medalist Evan Wilkerson’s understanding of partnership and responsibility. In Part 2 of our series, Evan reveals the intense 25-day bonding experience at The Seeing Eye school and how they conquered New York City’s subway system together.

What Evan reveals in this conversation:

Most importantly, Evan breaks down what every parent needs to know about raising independent, responsible kids – using guide dog partnership as the ultimate test of commitment.

NEXT WEEK: Part 3 – Evan’s first semester realities, disability services, and Paralympic future plans

WATCH PART 1: https://youtu.be/gOue912tpps

PARENTS: This conversation offers powerful insights about raising kids who can handle real responsibility. Save and share with other parents teaching independence.

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

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

Music Used:

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

Artist: http://audionautix.com/

Evan Wilkerson is an accomplished US Paralympic Swimmer, Bronze Medalist, and college freshman from North Carolina.

Competing in the S12 classification for visually impaired athletes (due to Leber’s Congenital Amaurosis), Evan achieved a career milestone by winning a Bronze Medal in the 100-meter backstroke at the 2025 Para Swimming World Championships in Singapore.

He now attends Ouachita Baptist University, where he balances competitive swimming with his studies. Evan navigates college life and training with increased independence, thanks to his guide dog, his new partner. Evan plans to continue his swimming career while pursuing a degree for full-time ministry.

(Recorded October 8, 2025)

Full Transcript of Episode 142:

INTRO: First, he won bronze, and then he met Titus. Welcome back to my three-part series with Paralympic medalist Evan Wilkerson. Last week, Evan mentioned the critical break he took from swimming in August. It was for intensive guide dog training, and this week Evan introduces us to his new partner, Titus. He shares the incredible journey of building a bond in just 25 days, navigating the massive New York City subway system and adapting to campus life.

Plus, he issues a critical safety warning that every pet owner must hear about service dog etiquette. You’ll never see partnership and responsibility the same way. Let’s dive into part two of my conversation with Evan.

Tonya: In the last episode, you mentioned that you had gotten a guide dog and taken a break over the summer. Tell us who is your dog? Name? How did you meet? And, and let’s just kind of start walking through that.

Evan: Of course. So, um, I went through a guide dog school called the Seeing Eye, uh, it’s the oldest guide dog school in the world.

Uh, their training is fantastic. They’re just an amazing school. Highly recommend if you’re looking into getting a guide dog, but, um. So my guide dog’s name is, uh, Titus. Uh, she’s a golden retriever. I had no idea, you know, this was gonna be a dog I was gonna be matched with. Um, until, you know, my instructor on the, uh, the third day class walked in my room and said, you know what?

This is your dog. She’s a golden retriever. We’re gonna leave you alone for about 20 minutes and then we’re gonna go do a route. And I was like, okay. They are throwing us off the deep end. Um. But we ended up bonding very quickly. The, uh, the whole training process went really well. Um, you know, we started off small just doing street crossings.

Then we kind of graduated to doing a route in, uh, a city with some outdoor seating and street crossings. And then we went on a much longer route with roundabouts, outdoor seating, stuff in the sidewalks, strange turns and sidewalks. Um, all that type of stuff. And then after we’d done more our city routes, we started doing what we called freelance.

So working in environments that you’re actually gonna work the dog. Uh, so for me, we did a gym, a pool, uh, we did some college-esque environments. Uh, and then of course there’s still some basic things that, uh, you wanna know how to do, like revolving doors and, uh, just kind of general things like that. Um.

Really maze like buildings. We did a courthouse up there just to know kind of how the dog’s gonna cue turns and, uh, stairs and all that type of stuff as well. Uh, so that training lasted about 25 days.

Towards the end, we went to New York City.

 We went from the bus station, took the subway up to, uh Central Park. And then we went from Central Park all the way back down through Times Square, along Broadway, uh, down to, uh, where we started at. And, uh, I think if I had to say a moment where I really became confident in the abilities of Titus as a guide dog, it was that trip because, uh, we really had no issues.

Uh, she got a little distracted by some pigeons at first, but, uh, once she got used to those and I had kind of corrected a couple times, we were, we were set, we were kind of cruising through, uh, through New York. Not a, not an environment. A lot of blind people can figure out how to navigate, but, uh, we, we figured that one out.

Tonya: When you were in New York, so this is an area you’re not familiar with yourself. Did you have like someone that was, that was trailing you? Or giving you directions to know where you’re going.

Evan: Oh, of course. Yes. Uh, so the instructors, uh, walk with us while we’re, uh, doing our guide dog trips. Um, just because, you know, when, you know, we didn’t start in New York.

Of course, we were up in New Jersey for our first little bit, but, um, or for the vast majority of it. But, uh, the instructor was always there just to kind of give us advice, make sure we’re going the right way. Um, you know. Let us know kind of what we should be correcting and what we shouldn’t, uh, all that type of stuff as well.

Tonya: You’re still in those early, early months of working together. Um, how, how easy is it for you to navigate the college campus now? ’cause this was a new territory for you.

Evan: I can turn my brain off and it’s automatic. It is so nice. Um, you know, I have the harness and the leash in my left hand. Uh, I can be walking and talking to someone and be aware of just my left hand.

I don’t have to have a cane sweeping, I don’t have to think about that. Um, if she does something that I know is definitely wrong, um, you know, I know how to correct and, uh, stay focused on, uh, what I’m doing. Um, and then she learns a lot of my routes as well. So I’m still having to navigate, of course. But, uh, it’s, it’s nothing like with a cane where you have to be aware of every bump in the road, every twist and turn of the sidewalk.

I just have to know generally where I want to get to and give her those very basic directions and she gets me there.

Tonya: And is she able to tell you if there is a trip hazard on the sidewalk?

Evan: Yes. Um, so she will stop for anything that could be a hazard to me. If she doesn’t see a way around it. So, um, low hanging tree branch, she’ll go around, um, cord going all the way across the sidewalk.

She’ll stop. Um, and sometimes she’ll kind of look at it and I can feel where she’s looking. Uh, and I just reach my foot out and see what it is. Uh, once I find it, I can kind of figure out, okay, should we go around or should we just step over? Uh, and then, you know, once we’re done with whatever that process happens to be, we just continue on our way.

Tonya: Nice. So I have to ask you, because, ’cause you’re, you’re the, the expert now on this. I just saw a clip that Molly Burke had posted. She’s crossing the, the street and there’s a car that’s stopped on the crosswalk. And so she’s standing there with, with her dog and she’s telling the driver, I’m blind and I need, and I, and I can’t.

I can’t go across what, like what if they told you, what do you do in that situation? So the car’s blocking the crosswalk completely.

Evan: If the car’s block blocking the crosswalk, typically what I would do is, uh, you know, I’m gonna realize, okay, there’s a car she’s stopping for this.

I’m going to, you know, tell her to continue. Um, I’m more than likely going to point her in the direction of the back of the car.

Tonya: Okay.

Evan: Um, so that I’m not walking into the parallel traffic.

Tonya: Yeah. ’cause that’s what I’m thinking. Then you’re walking into traffic.

Evan: Right? So if you go towards the back of the car, you just circle around, get back on the crosswalk.

Uh, I’ll tell her straight and that means, you know, get me out of the street. Uh, she’ll find what, wherever the up curb is, truncated, domes, whatever it happens to be. Uh, and you know, it’s, it’s very simple, very smooth process.

Tonya: Okay. Yeah. ’cause, ’cause in the, in the clip, Molly’s telling her to back up and the driver backs up and then there’s another car that’s blocking the way.

And so she’s facing the same thing again.

Evan: Right.

Tonya: Um, and I was curious about that.

Evan: That just creates issues.

Tonya: Well, and, and I think drivers are not, it, it doesn’t even cross their mind.

Evan: Right.

Tonya: Because, because they, they’re assuming that anyone that’s in the crosswalk will just walk in front of the car and they’ll be fine.

But you can’t do that if you can’t tell how far forward they are exactly. Or where the, the left turn traffic is coming from, that might be coming across it. So that’s a smart thing to do. Okay, so let me get back to where my course of thought was here. So complete, completely going off on tangents now.

Oh, on campus. Are you having any trouble with students that don’t understand this is a working dog?

Evan: Not really a lot, especially a lot of my teammates know. Um, I talked to all of them, uh, fairly early on being here, and then I’m a very fast walker and so if they want to catch up to try and pet her, good luck.

And then she will also see a lot of people as obstacles, um, to be avoided. And so she’ll circle around them. And, uh, you know, we’ll just keep going. Like, uh, nothing happened. But truthfully, no. There, we really haven’t had any sort of issue with people wanting to pet her. Um, you know, that’s a different story if I just tie her down somewhere, uh, while I am doing something.

But, uh, when she’s with me, no, we have no issues.

Tonya: So when you’re, when you’re training, where is she?

Evan: So, I have her a crate. Um, on the side of the pool, uh, just on the pool deck with, uh, you know, have her nice bed and stuff in there where, uh, you know, while I am, uh, training and working hard, that’s her nap time.

For her to kinda recharge. ’cause it’s, it’s a bit of a walk over to the pool, especially for her. And it’s, you know, it’s a good time for her to relax and, you know, the mornings kind of get those last few minutes of sleep and in the evenings. Um, you know, kind of rest up before we have to walk back, go to dinner, uh, do whatever I’m doing in the evening, all that type of stuff.

Tonya: So you’re just keeping the crate there at the pool?

Evan: Yes.

Tonya: Nice. I’m glad they’re able to work with you with that. All right, so last question for this section.

What would you tell other visually impaired students that are considering a guide dog?

Evan: It’s not for everyone. Um, if you can’t be responsible and have a routine and be willing to take care of another living creature, don’t do it.

I think a lot of people overlook the responsibility. Um, they overlook a lot of just the general care. Um, a lot of the, the financial cost that goes into it. And, you know, if, if you’re not willing to do any of those things, don’t get a guide dog because then you know you’re just gonna start resenting the dog.

I think another thing I would say is don’t expect the dog to do everything for you. You are still in charge of navigating. Um, I think a big misconception is you just tell the dog, all right, we’re going to Walmart. And the dog knows exactly where Walmart is. It’s got a built-in GPS, and it’s just cruising its way down the street.

You have to know the route and know, you know, the dog’s gonna make mistakes, and you have to be aware because, um, a lot of those mistakes aren’t little. Uh, they could be. You know, potentially really bad. And so you need to be aware of where you are, what the dog’s doing, um, and make sure the dog isn’t being distracted.

Tonya: Right. And then, I do have one, one more question. If listeners have dogs themselves and they come across someone that’s using a guide dog, what would you tell them? Like, how should they treat their dog to keep the guide dog safe?

Evan: Control your dog. Um. I always carry a cane for this purpose.

Um, a lot of people are terrible at controlling their dogs. I have gotten in situations where I have had to pull out my cane and be ready to beat another dog to get them to stop attacking my dog. Uh, because owners think, oh, they’re just being friendly. No, they’re not being friendly. They’re growling and foaming at the mouth.

Get them away from my dog or we’re gonna have issues. So the biggest thing is. Be aware of what your dog is doing. Be aware of other dogs around you, and if you see a guide dog and you have your dog with you, cross the street and be out of the way.

Tonya: I asked that question because I don’t know how many people realize that that one interaction could ruin a guide dog’s whole career.

Evan: Absolutely.

Tonya: And that is a huge danger for not just the dog, but for their handler as well.

Evan: Of course.

OUTRO: Evan and Titus are a powerful team showing us what it means to be all in on responsibility and partnership. That profound commitment is exactly what we’ll explore next week. As Evan dives into the realities of his first semester, we’ll find out how he’s adapting to college life, which disability services he’s utilizing, and which ones he’s skipping, and the roadmap for his future Paralympic swimming plans.

If you’re parenting a teen, navigating challenges, or heading toward independence, this final conversation is essential. Make sure you’re subscribed and hit that bell. Next week we’re sharing real world advice from a medalist about navigating college with a disability. I’ll see you next time.

Q1. Which organization did Evan Wilkerson use for his guide dog training?
A1.Evan went through The Seeing Eye, which is the oldest guide dog school in the world, located in New Jersey.

Q2. How long was the intensive guide dog training program Evan completed?
A2. The immersive training process where Evan and his guide dog, Titus, built their partnership lasted approximately 25 days.

Q3. What is the biggest advantage of using a guide dog over a cane on a college campus?
A3. The guide dog provides much greater independence, allowing Evan to “turn his brain off” and avoid being constantly aware of every bump or turn required with a cane.

Q4. What specific advice did Evan give for maneuvering around a car blocking a crosswalk?
A4. Evan advises guiding the dog toward the back of the car, circling around it, and then instructing the dog to get back on the curb to avoid walking into parallel traffic.

Q5. What is the most critical safety warning Evan gave for pet owners around working service dogs?
A5. Pet owners should control their dogs and ideally cross the street to avoid the working dog. An aggressive interaction can permanently ruin a guide dog’s career and endanger the handler.

Q6. What key trait must a person have before considering getting a guide dog?
A6. Evan stressed that a person must be responsible and willing to maintain a strict routine and provide constant care, as the dog is a living creature, not just a tool.

The post Episode #142: What My Guide Dog Taught Me About Independence (Paralympic College Athlete) appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

‘They can drown me, but I’m not being fourth.’ That was Evan Wilkerson’s mantra in the final meters of his World Championship race. The blind Paralympic swimmer had fought through E. coli at Paris, burned out at nationals, and nearly quit. Then he learned the lesson every parent needs to teach their kids about resilience.

In this episode, Evan Wilkerson shares his journey from Paris Paralympics disappointment to World Championship bronze—and the critical lesson about burnout that changed everything.

What You’ll Learn:

How Evan competed at the Paralympics with severe E. coli
The burnout trap of “outworking every problem”
Why taking breaks makes you stronger, not weaker
How Ouachita Baptist University’s creative tapper solution works
The mental game of racing when you can’t see your competitors

Key Moments:

 • The tactile details of a World Championship bronze medal with braille
 • “Your first 50 looked great. The second 50, you looked like you were drowning.”
 • The work-study student tapper program that’s changing college para-swimming
 • Race day in Singapore: “They can drown me, but I’m not being fourth”

This is Part 1 of 3 in Evan’s story. Next week: His guide dog training experience and critical safety information every dog owner needs to know about working service dogs.

Watch Evan’s Pre-Paris Interview (2024): https://youtu.be/UOmzsTlvg7c

Learn more about Paralympic sport classifications: https://youtu.be/cPmYgv_Hskg

Watch Evan’s first interview (2022) on Water Prairie: https://youtu.be/y3SE3m7Lrhg

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

Music Used:

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

Artist: http://audionautix.com/

Evan Wilkerson is an accomplished US Paralympic Swimmer, Bronze Medalist, and college freshman from North Carolina.

Competing in the S12 classification for visually impaired athletes (due to Leber’s Congenital Amaurosis), Evan achieved a career milestone by winning a Bronze Medal in the 100-meter backstroke at the 2025 Para Swimming World Championships in Singapore.

He now attends Ouachita Baptist University, where he balances competitive swimming with his studies. Evan navigates college life and training with increased independence, thanks to his guide dog, his new partner. Evan plans to continue his swimming career while pursuing a degree for full-time ministry.

(Recorded October 8, 2025)

Full Transcript of Episode 141:

Evan: Has the braille and all the designs you can see. I believe this side has some sort of flower wave-type design. It’s very intricate, and so you can feel the detailing and all that type of thing that went into it.

INTRO: That’s a world championship bronze medal, and the journey to earn it involved food poisoning, quarantine, burnout, and a college freshman learning when pushing hard isn’t always the answer. I’m Tonya Wollum with the Water Prairie Chronicles, and today Evan Wilkerson is sharing lessons about resilience that every parent needs to hear.

Tonya: Evan, I have to start with this. Can you show us that bronze medal from Singapore?

Evan: And Of course

Tonya: How does it feel holding it inside your hand?

Evan: It’s very heavy for a medal. Um, this is definitely the heaviest medal I’ve ever gotten. Making these, it’s very detailed. Uh, the braille in them is very good, and the texture of all of the, the different designs and things was incredibly well done.

Tonya: Oh, wow. So it’s, now I saw a picture that you had posted on social media, that it had braille on it. What other tactile images are on there?

Evan: So it has the braille, and then, all the designs you can see, are on there. So, you know, I believe this side has, it’s some sort of flower wave type design.

Tonya: Yeah, that’s how it looks.

Evan: Um, it, it’s very, very intricate and so you can feel, it’s hard to tell what it is at times, but you can feel the, the detailing and all that type of thing that went into it.

Tonya: The last time we talked, you were heading to Paris. had really high hopes. I’ve shared a lot on the platform here, but not everyone who’s listening was part of that journey with So take me back to that moment. You were actually heading at the time that we talked, I think like the next day or a couple days later, you were heading to the training center and you kind of walked us through that.

And listeners, I’m gonna link that so you can go back and listen to that if you’d like to kind of get the full picture of where we’re going with this. But before the first competition, you ran into a roadblock.

Tell us just briefly what happened after you got to Paris.

Evan: So, before we were in Paris, we were in Germany. I love exploring international food. I I think a lot of it tastes better than what we have here. And so I go all out in a lot of ways. I got a little too adventurous, and when I got to Paris, I started to realize that may have been a mistake. We flew in on a Saturday, started feeling off on a Sunday.

It wasn’t great. I was like, okay, this is fine. I’m gonna push through. Wednesday comes around, it’s not better. I was like, I need to get this tested. I go down to sports med, they test it, they tell me, yeah, you have E. coli. It’s probably one of the worst cases we’ve ever seen.

It’s really bad. I’m not gonna go into details, but needless to say, very bad. They quarantined me for about two days before the competition. I actually got out of quarantine 12 hours before my first swim, so that was very much not ideal.

I hadn’t touched water for two days.

Which if there’s any swimmers out there, you guys know you want to keep moving before your big races; otherwise it’s gonna go pretty poorly. With E. coli, I also lost a lot of weight. I’m not a guy who has that much weight to lose as it is. Uh, so I went in feeling pretty weak.

But, uh, the competition itself, uh, all things considered, went very well.

We had a ninth-place finish in the a hundred-meter backstroke, which, uh, after having E. coli was just a miracle in and of itself.

I talked to one of my friends when I got back home, and she said, yeah, your first 50 looked great. The second 50, it looked like you were starting to drown a little bit.

And I was like, yeah, that’s basically what happened. so that was, that was not ideal, but all things considered, what I had going on pretty good.

Uh, so, Wednesday we had the, uh, the a hundred free. Dove in, my goggles fell off. Kind of painful. I think we had like an 11th or 12th place finish even with that happening with E. coli.

Uh, so that’s, that’s still very well, very well done on, uh, on my part and I think on the part of the coaching staff who helped me kind of get myself back into shape after losing all that weight. And then that night, of course,

we had the four by 100 meter freestyle relay and, uh, we placed fifth in that the whole relay team did.

We broke the American record, uh, and then Saturday was butterfly. Um, and butterfly isn’t really my major thing, so I was like, I’m gonna walk out here, I’m gonna soak it all in. I’m gonna enjoy the race and then I’m gonna get out knowing that, you know, I gave this competition all I had, uh, and this was what I built for built, uh, basically built to get to for eight years and I somehow made it happen.

And if I can make this happen, you know, I don’t think there’s a lot that I can’t do with just relentless effort and determination.

Tonya: Yeah, well, even to, for the relay team to have been that close. I had not remembered how the relay finished. So you did well considering everything that was there. You did well on all fronts. I think.

Evan: Oh yeah.

Tonya: How did you reset mentally after Paris? Because you had spent eight years getting ready for this, and then to have been hit by something out of your control like that had to be hard emotionally and just recovering.

It’s always emotional whenever you’re trying to recover from something to begin with.

Evan: In hindsight I definitely made a mistake after Paris. Typically when I have a problem like that, my solution is just to outwork the problem. You know, if you can’t beat it, figure out how to outwork it.

Tonya: Right.

Evan: And so I took about a week and a half off after Paris, and after that week and a half, I jumped right back into full swing training.

I did that for, I’m trying to think here about eight, 10 months, after Paris. I had some good time drops, but I could really tell, okay, this was, this was a mistake. I should have taken more of a break. I’m getting burnt out. This is getting really hard. But again, my solution: outwork the problem.

Um, and that’s what I kept doing all the way up until, uh, national Championships of, uh, that June when, you know, I really just completely crashed and burned. Like when I say I got to the meet and I was ready to be done with the meet, that’s exactly what I mean. I showed up to the meet and I was like, oh my gosh, I can’t wait for this meet to be over.

And that is not me. Uh, when I get to a meet, I am, I am ready to go. I, I want to get in, swim fast. Win heats, um, being ready to be done with the meet is not me at all. And that’s kind of when I realized, okay, we have an issue that is gonna take some time for me to, to figure out and to figure out, you know, what my future of swim is.

And, uh, thankfully after that meet, I was going to go up to New Jersey anyway, to train with my guide dog, uh, which I think we’ll talk more about that later. But that was a much, much needed about month break in, uh, my swim life. Uh, I think if I kept pushing through there, uh, we would not have had the results we had at world championships just because the pure, uh, mental strain and burnout that was occurring during that time.

Tonya: You kind of hit a wall at that point, it sounds like, but yet you still qualified for the world competition.

Evan: I did. Yes.

Tonya: Interesting. So pushing through. Maybe psychologically wasn’t the right stage to go through, but, but the training at least um, had you back up. So you wonder what would your times have been, had you paced that differently coming in? And you’re never gonna know that.

Evan: Yeah, no. It, it’s one of the things you can’t bother yourself thinking about.

Tonya: And there’s not a need to. Part of it is, you know, these are, these are stages of growing up too and

Evan: Absolutely.

Tonya: As hard as it is. We all have to go through those phases of learning. And it sound sounds like you, you’ve learned a lot through this. That’s only gonna serve you well moving forward. So I was gonna ask you what your lowest point was, but it sounds like you may have already shared where you hit that one.

Evan: Oh, yes. Um, definitely that June.

Tonya: So, you’re now in college. And let’s see if I can say it right, because listeners, if you see the name of this, you’ll know why I’m saying this. I wanna say Wasta. Am I right? Am I close?

Evan: Ouachita (Wash-i-tah.)

Tonya: Ouachita (Wash-i-tah.) All right. I’m, I’m gonna get it eventually.

You are at Ouachita,and you’re training as a college freshman.

So listeners, last time we talked, he was finishing up his senior year. He’s now, now in college. And, um, you started as a, as a new freshman coming in on the swim team there. So did you start training right away?

Evan: I did. Um, actually I never stopped, so I rolled straight from my club team in August, uh, right into training here. With the NCAA, we can’t officially start training, until the second week of school. But, we can go in and open swim as long as we’re not being coached. And so that’s what I did.

Um, I built my own workouts, uh, was my own pace clock. Uh, practicing like that is not fun. But, uh, you know, there’s a lot of not fun things we do for sports that, uh, you just have to put up with sometimes.

Rolled right into training with, the coaches here. And they were both of them, Coach Dawson and Coach Logan.

They were both amazing at getting me ready for Worlds, making sure I had what I needed, uh, getting a good taper in, making sure I had a plan to adjust my sleep schedule. Uh, all of the 1,001 things you need to compete at a high level, uh, basically on the other side of the world, uh, because that’s a, a huge time zone jump.

It’s a big climate jump. Uh, and you still wanna be able to, uh, to get in and go fast and feel good while you’re doing it.

Tonya: Have either of your coaches that you just mentioned, or anyone on the team, have they ever worked with a blind swimmer before?

Evan: No. Um, I am the, in some cases, I’m the first blind person they’ve ever met. Um, Coach Dawson, uh, was on a swim team with Tharon Drake, who is a, a blind swimmer. Um, Paralympian, all that type of good stuff. Uh, Tharon’s just an amazing guy and, uh, I think swimming with him really helped out, uh, Coach Dawson a bit to kind of know what to expect and to kind of have that, uh, that second voice, uh, kind of showing him how to, to coach me, how to explain certain things to me, uh, how tappers and sprinklers and all those wonderful things we use work.

Um, and so he has been a huge help through this whole process.

Yeah

Tonya: Well that’s, that’s what I was gonna ask if you’ve had to train them how to, how to help you. Because, because you’re using extra tools that are not, not your typical tools.

So, who is tapping now during practices and all?

Evan: So we, we actually have work study students who we got to be tappers. Uh, and that’s great. I don’t have to pull from teammates to be tappers. that, that really shows if you have good coaches who can think outside the box, you’re gonna get a fantastic solution. Uh, and it has been great so far.

Uh, ’cause these guys can show up and tap during practice. They can tap during meets. you know, this is, this is how part of how they’re getting scholarships for college. And so they’re, they’re with very, uh, very great guys who are doing it.

And uh I appreciate them doing it a lot.

Tonya: Are they, um, good students to learn how to do this or have you had any, any near misses to the wall with, with teaching them how?

Evan: They are both fantastic. Um, one of course is slightly better than the other. You’re gonna have that with any sort of tapping, but, um, we, we haven’t had any close calls being too close, so that has been a good thing. you know, plowing into the wall at full speed isn’t too fun. So while I’m still teaching them a little bit, I’m like, if you have a question, go further out.

Don’t go in because if you go in I could hit and that is no fun at all.

Tonya: No. No. And we, we can’t afford an, an injury, especially when you first got there and are trying to get ready for a quick turnaround to head across the, the world.

When you first got there, so training has started, you’re in that, that second week now where you’ve got your team training, you’re trying to get ready for the world championships. What did a typical day look like? You’re also getting used to being in college.

Evan: So our practice schedule varies from day to day. Uh, most of the time we have, uh, a morning practice and then Tuesday, Thursday we go to the weight room and lift. And then after whatever we have in the morning, we go to class. Uh, typically, you know, cramming lunch somewhere in there. Um, finish up with classes or homework depending on the day at around two, run over to the pool to be at practice at 2:15.

depending on the day, be there anywhere from, uh, until 3:30 or closer to 4:30. Um, some days we’ll do dryland workouts after practice. So that’s, you know, running, pull-ups, uh, AB workouts, just body weight stuff. Um, and then in the evening, you know, have dinner, do homework, sleep, repeat. Some people find it exhausting.

I, I think it’s great because I can tell I am, you know, I’m improving on this schedule. Even the, uh, the week I had was doing this whole schedule for Singapore. I was like, yeah, this is great ’cause this is exactly what I need. I’m getting in good yardage, a lot of sprints, getting in a lot of weights, a lot of workouts, really building up goodmuscle strength, muscle tone, all that type of stuff.

Tonya: Excellent. Well, we’re gonna talk more about school in another part of this conversation, but I wanna jump to Singapore now. Take me through race day now. Now, your first race was your strongest stroke, right?

Evan: Race day was fantastic. Singapore did such an amazing job with this. That was just probably one of the best swim meets I’ve ever been to.

The pool was nice. Where we were staying at the hotel was very nice. We had a very short bus trip to get there. It was only about 10 minutes compared to a lot of your international meets where it’s, uh, you know, it can be up to an hour to go from where you’re staying to the pool, and that’s a really long time to be sitting on a bus.

Tonya: Yeah.

Evan: But, you know, I get up, I have breakfast, I get to the pool, I do my warmup. Big fan of music before I swim. So I sit down, listen music for about hour and a half, go change my suit, warm up again. I go sit in the call room, walk out onto the pool deck. I do my morning swim, which I knew I was probably gonna make finals, so I wasn’t intent on, you know, really burning myself out in the morning.

Uh, kind of cruised that. Did about a 104.2. So that’s only about a 0.2 away from a best time . At night, I knew I was really gonna have to, uh, to turn up the heat a little bit if I wanted to make it on the podium.

Uh, I was fourth, uh, in the morning and I was like, I am not being fourth. That was my thought in the last 15 meters of my race at finals, they can drown me, but I’m not being fourth.

And that night, you know, I come back to the pool, basically repeat the whole routine. There’s a lot more hype when you’re walking out. You know, there’s, uh, they’ve got music pumping from the speakers. A lot of the times there’ll be people with drums and other instruments up in the stands going crazy.

Uh, it, it’s very loud, it’s very intense. They’re announcing your names one by one as you walk through like an arch. And it, the whole experience is just designed to be like, oh yeah, it’s race day, let’s go. Which for me it worked. That race was really good. I got in, I hit my first 50 pace. Of course I didn’t know that in the water, but it felt strong.

Um, and in that second 50 I was like, okay, it’s everything I have left ’cause I’m not getting fourth. I really just pushed that last 50, hit the wall at a 1:03.05, ended up by taking bronze, behind, uh, uh, I believe the country that won gold was a Azerbaijan. And then there was a neutral para athlete who won silver. I believe he swims for Russia, but of course, they’re, you know, currently banned, so they have to swim under a neutral flag. But, uh, that was just a great race, a great experience up on the podium. You know, ev even with bronze, you’re still in the podium. You know, you’re still third in the world and you can’t ask for a lot more than that.

Tonya: No. So I haven’t asked you this. Are you on A Team now?

Evan: No, um, I’m actually still on B Team, but, uh. We, we should be making the jump to A Team here in the next year or so. Uh, with the training I’m doing now and the way that the times work, uh, they’re probably going to slow down slightly now that we’re off, um, the post Paralympic games year or will be in 2026, so the times will get just a little bit slower and that’ll help me out because it’s a little easier to, uh, to make that jump

Tonya: Right.

Evan: From B to A.

Tonya: Okay. And you’re still swimming S-12, right?

Evan: Correct. I got classed this year. They classed me as a 12. I am more than likely going to get classed again next year, uh, just because we’re, we’re questioning that classification a little bit, uh, because my eye doctor and their classification staff disagree by a very large margin on how much I can see.

Tonya: I was gonna ask you too is you were talking about you, you weren’t gonna be fourth but like, how do you even monitor where you are? Because like in the race, um, for back, you weren’t anywhere near the guy that was fourth. So you have no idea where he is.

Evan: That was basically just my mantra to make sure I kept going fast.

Tonya: Because you don’t want to be that guy who just got kicked off the podium. Right, right.

Evan: And you know, I was like, that’s not, that’s not gonna be me. Um, we’re, we’re making this third place. And, uh, at that point, you know, I don’t know where he is.

All I know is I need to go as fast as I possibly can, um, to avoid that happening.

Tonya: It was a great race to watch. It was really a lot of fun. We were yelling here, my father-in-law came over, and we were all watching it together.

Evan: Oh, very nice.

Tonya: So when you touched the wall and you realized that you’d won bronze, how did that feel? Can you describe for us?

Evan: Oh my gosh. It was the best feeling ever. Um, I don’t know if they showed it on livestream, but you can see me. I like jumped out of the water and came down and I like just pounded the water with my fist. I was just overjoyed. Um, and I’m usually a pretty calm, collected guy. Uh, I, I was yelling my head off down there.

I was like. Finally, this is what I’ve been working for and it’s all paying off.

Tonya: Did you realize right away, or did, did someone tell you? How did, how did you find out?

Evan: Um, my tapper told me about five seconds after I hit the wall.

Tonya: And who was the first person that you called or texted after, after you got out of the pool?

Evan: Oh my gosh. That, to be honest, I don’t even remember. I got out and I had something like 50 something unread messages from probably as many people.

Tonya: Oh, I’m sure.

Evan: So it, it was, it was wild.

Tonya: All right, so last question, and this is a thought provoking one for you. If you could go back and tell your sick self in Paris one thing, what would it be?

Evan: Take a break. Take a break after you’re done, it’s gonna make, it’s gonna set you up for more than likely a better year. You’re gonna be happier. Um, you know, your Spring Season’s gonna be a lot better and you’re gonna be able to have, you know, a more consistent training, uh, before Worlds. Um, and just while you’re here, relax and enjoy the experience.

Uh, you know, you’ve pushed really hard to get here. This happened. It’s unavoidable. Just relax and have fun because, you know, if we push hard, we’re gonna, we’re still not gonna do super fantastic. So use this to learn.

OUTRO: That bronze medal represents eight years of work, but Evan’s biggest lesson was learning when to rest. Remember that August break he mentioned for guide dog training? That month saved him from total burnout and set him up for Singapore success.

Next week we’ll be talking about that guide dog experience, and Evan shares critical information every dog owner needs to know about working service dogs. What your dog does around a working guide dog can have serious, even dangerous consequences.

This is part one of three. So subscribe and hit the bell so you catch part two next week. Comment below if you’ve ever dealt with an out-of-control dog in public, and I’ll see you next week.

Q1: What was Evan Wilkerson’s major challenge before his 2025 competition?
A1: Before his major competition in Paris in 2024, Evan was severely ill with E. coli. He was quarantined and lost significant weight, competing just hours after being released.

Q2: Why did Evan initially struggle with burnout after the Paris competition?
A2: Evan admits his mistake was trying to “outwork the problem” by jumping back into full-time training too quickly. This led to a mental and physical crash that impacted his performance.

Q3: What helped Evan recover from his burnout before the Singapore World Championships?
A3: A required month-long break to train with his new guide dog provided the necessary physical and mental reset. This break proved critical to his ultimate success in Singapore.

Q4: What classification does Evan compete in for Paralympic Swimming?
A4: Evan competes in the S12 classification for visually impaired swimmers, due to his Leber’s Congenital Amaurosis (LCA).

Q5: What college team does Evan swim for?
A5: Evan is a freshman swimming for the NCAA team at Ouachita Baptist University in Arkansas.

Q6: How did Evan’s college coaches support him with his tapping needs?
A6: Evan’s coaches found an innovative solution by using work-study students as tappers, preventing him from having to pull teammates away from their own training.

The post Episode #141: The Hardest Lesson: Why a Break Saved a Paralympic Career (w/ Evan Wilkerson) appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Your first IEP meeting doesn’t have to feel overwhelming. In this step-by-step video guide, you’ll discover exactly what to expect at your first IEP meeting as a parent, including who sits at the table, how to prepare your parent input statement, what happens during the meeting, and your options afterward.

Whether your child is just entering special education or you’re navigating this process for the first time, this 15-minute parent guide gives you the confidence and knowledge to advocate effectively.

FREE RESOURCE: Grab my IEP Meeting Checklist with the 15 most important questions to ask at your meeting

Understand each team member’s role (LEA, evaluation interpreter, special ed teacher, etc.)

Learn how to write a powerful parent input statement

Know when and how to speak up during the meeting

Discover your options if you disagree with the outcome

Build ongoing collaboration with your child’s team

Remember: You are your child’s best advocate. This meeting is just the first step on a journey, and you’re not locked into anything forever. Stay involved, stay communicating, and trust your instincts.

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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

(Recorded October 11 2025)

Full Transcript of Episode 140:

Tonya: Have you ever walked into a room and felt totally outnumbered? Maybe it seemed like everyone else was speaking a foreign language.

That feeling of uncertainty and even dread is so common for parents walking into their first IEP meeting. If that’s you, you’re in the right place.

When my daughter, Emily, was first entering the public school system, she was coming out of the early intervention program, so we had it a little bit easy because I knew some of the people that were sitting at the table at that first IEP meeting.

I didn’t understand what was being said. I took everything at face value, and I just sat and listened. I had no idea what to ask, what to say, what it all meant. I was just going with the flow.

However, we moved to different states twice after she started in the process, and before she was into second grade we were already in the third state that she was in. So I remember, even though I had been through the process before, going into a new state and a new school district was just as intimidating as that very first meeting when she was two years old, not even three years old yet.

And then when my son came along and needed to get into the system, I had a lot of experience. But it still took me time before I really felt comfortable with understanding what to expect and what my role was as a parent at the IEP table.

In fact, for my son, we were told no twice before he was approved for special education, and that was after we went into private testing to bring that information back to the school before they agreed with us, that yes, he did need support. So I understand how intimidating it can be no matter what you’re coming in from or what your experience may be.

So this video is for you. If you are going into that first IEP meeting or you’re still not comfortable going in, I wanna try to help alleviate some of those concerns for you and help you know what to expect.

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

So let’s take the mystery and the anxiety out of the IEP meeting. This episode is your roadmap, so

 you can walk in feeling prepared, knowledgeable and confident, not panicked.

Go ahead and grab something to take notes with.

You’ll want to jot down the team members and what you should take with you to the meeting.

So let’s start by talking about who’s at the table, who’s on the team? The IEP team itself. The number of people in the room can be a little bit intimidating, so let’s break down who they are. The IEP team is a key group of people who are all going to play a role in putting that program together for your child. So here’s some of the people that will be at the meeting. First of all, you are there, you’re the parent. You know your child the best, and it is crucial that you are at this meeting.

The special education teacher is another person that will be there.

This person will be your main point of contact with the plan and any accommodations. Then you’re gonna have a general education teacher. This person will make sure that the plan works in the general classroom.

Then you’re gonna have an LEA representative. LEA stands for Local Education Agency. This is someone that will be an administrator who can commit the resources that are needed to put the program together. Then you’ll have an evaluation interpreter, and this person is, there’s different roles that they could be coming from, but this is someone who is equipped with being able to explain the testing data and what it means for your child.

So this is a key person for you to be able to ask questions of during the meeting.

Now you might see other people there too, so you may have a school psychologist there. There might be a speech and language pathologist, an occupational therapist. there may be a support person that you invite to take with you.

It could be a friend or an IEP coach, and the school may have other people in there as well.

So here’s a question for you. Have you ever felt lost in a meeting where there are a lot of professionals around you? And comment below, what’s your biggest worry about your first IEP meeting?

Now let’s talk about the paperwork and the preparation. So preparation’s gonna be your superpower here. You want to do a few things before the first meeting.

So first of all, you wanna get a review draft of the IEP. If you get a draft, don’t ignore it. You wanna read this, highlight any confusing parts.

Circle the concerns that you have, highlight or circle the words that you don’t understand. Or if there are acronyms in there, they’re going to be a lot. And if you don’t know what they are, then circle and highlight those. This is your preview. Don’t wait until the meeting. This is gonna give you a chance to know what do I understand already and what are my questions or concerns.

The second thing is you want to write what’s called a parent input statement. As an IEP coach, this is something that I help my clients with all the time, so it’s an easy thing to put together, but it can be a little bit overwhelming if you don’t have an idea of what to put in.

So you want to put this together because this is your voice put into writing, and you want to include the strengths for your child. What does your child do well? You want to have concerns and needs. These are your concerns and needs. So what challenges do you see at home and at school? And you wanna have your vision in there.

What do you hope that your child’s gonna be able to do in a year, in five years after graduation? Put all of this in writing.

And the third thing is, what do you wanna bring with you? You wanna bring a binder with any documents that you have. I would recommend that you have a three ring binder that you’ve already started. If not yet, go and get one today and get this going. Put copies of any medical paperwork that you have that shows what the child’s need is, what the diagnosis is.

 If you’ve worked with therapist, you can keep your sheets in there. How they give you your updates. If you’re coming out of early intervention, you may have some of the reports that they’ve given you of what was happening and what the therapy was.

You can file these in there so you always have access to them. And then you want to also bring a list of questions. When you went through the IEP and you highlighted it. Jot down what those questions are, and you’ll need a pen and a notepad or some blank paper of some sort so that you have a place to write your concerns or you can write what you’re learning as you go.

And then that draft, IEP that they gave you with the notes, make sure that that’s in the binder as well. Take all of that with you.

Now, another thing you can do to prepare is mental preparation. You wanna take a few deep breaths before you walk into that room. Remember, you are going to be there because you love your child. And this is a collaboration. It’s not a confrontation. So you’re going in to be part of this team, and as we said, you are that crucial member coming in who knows your child and you’re gonna see the bigger picture. The school sees your child just during the school day.

You see your child before school, during school, after school, at bedtime at night, and on the weekends. So you’re bringing in information that no one else knows.

Now let’s move on to the meeting itself. You’ve prepared, you took those deep breaths, you’ve walked into the door. What happens during the meeting itself? So knowing the flow can help you stay a little bit calm and to know when to ask questions. So first, you’re gonna have introductions and ground rules.

 Everyone’s going to introduce themselves. They may pass around a paper where you’re signing your role and your name, for an attendance. You may not remember everyone specifically, but at least you’ll have an idea of who’s there. And feel free to jot down names as you’re going.

Then they’re going to review the evaluation and present levels, and you’ll see the letters, PLAAFP.So the PLAAFP stands for present levels of academic achievement and Functional Performance.

It’s a lot of words, but it’s just the present levels. Where are they right now? And, this is gonna be the heart of the IEP. It shows where your child is now based on the testing and the teacher feedback that they have.

So this is where you’re coming into the meeting from. You wanna check this for accuracy.

If this section seems off, the rest of the plan’s going to be off too. So be listening, look at this. You should have it in writing, and it should have been in that draft that you had already, but this will be the next section they go to.

Then they’re gonna move into the discussion of goals. The team is gonna propose goals for your child, and these are what your child will be working toward in the next year.

You wanna make sure these are smart goals. If you don’t remember from back in school. Smart goals include that they are specific, they’re measurable, they’re attainable, they’re relevant, and they’re time bound.

As you’re talking about the goals you want to ask, how will you measure that, and how often will I get updates? And these are typical questions and things that you need to know so that you know how to understand what’s happening with the goals for your child and how they’re making progress.

Typically, you’re gonna be updated whenever report cards go out, but each school is different in how they do this.

The next part is gonna be the services and placement. So you have the goals that you’ve set up, but how are you going to get to those goals? So the service that’s being provided and where your child’s going to be for those services is what the next part is.

This will cover how much time your child’s going to spend in special education versus general education. So being in a separate setting outside of the regular classroom or in the regular classroom, and when their services we’re talking about, may be speech, Occupational therapy, it could be orientation & mobility if your child is visually impaired, or a teacher for the visually impaired. There are different professionals who will be coming in and out to work with your child, depending on what your child’s needs and goals are, and these services need to match the goal. Then the next section that I wanna talk about is speaking up and taking notes.

It’s okay to pause things. As you’re going through, you’re going to get a lot of information at this first meeting because this is where they’re bringing all the data, all the testing in, and this is all new for you. So feel free to to take a pause and say. If they say FBA, it’s like, what does that mean?

If you hear LRE, BIP, there are a lot of different acronyms that you’re gonna hear and you may not be familiar with these. So stop and just say, you know, I’m not sure what this is. Can you tell me? They’re not going to mind you doing that, so, make sure that you understand and feel free to ask for a definition.

You wanna take notes. You need to ask for a five minute break if you’re getting overwhelmed or you’re just, it’s too much to take in, ask, you know, can, can we take a, a short break? It’s gonna be okay. So, feel free to just, you know, pause if you need to and then come back to it.

And then the last part is the signature.

And in most states, your signature just means that you attended the meeting. And it’s not saying that you agree with anything. Feel free to ask what the signature means if you’re not sure, since this is your first meeting. But typically signature means attendance only, and if you’re unsure, you can ask for more time and indicate that you only wanna consent to certain sections, that type of thing.

But you do want to sign it showing attendance because you want to prove that you were there. You want it to be on record that you were at the meeting.

The meeting is over, what do you do now? So even though the meeting’s over your advocacy is just beginning really, because now you have the guide of what you know the school has agreed to, you want to be part of where we’re going moving forward now.

So first I would follow up. You should receive a final copy of the IEP within a few days or weeks.

Sometimes you may get a draft copy of it right out of the meeting. But the final one they should have for you later. ’cause they have to go through the authorization process. And I typically would get mine for my kids within the first two days. Afterwards, it would be an envelope that would either come home with one of the kids or if I was at the school, they would hand it to me.

Double check that all the changes and agreements that you covered in the meeting are included on the final copy. And the members of the team want this to be right. So it’s not a problem for you to point out if something was miswritten or represented wrong. Don’t hesitate to reach out if you spot a mistake.

If you disagree. If you leave the meeting and you feel uneasy about this or you’re unhappy with the outcome, you do have some options. One of the things that you can do is you can request another meeting if you need more information or if you want to talk about this more with the team because

 you’re just not comfortable with how it turned out, you could ask for another meeting. You could write a detailed letter about your concerns and send that to the team. And then you could also use the state’s dispute resolution process, which often starts with mediation. I highly recommend that you work through other options first.

And the first one would be to talk to your special education teacher because they’re gonna be your point of contact, and they probably will have some good advice for you of what to do, or maybe to understand better why a certain decision was made. But ask your questions, work with them, write your letters, work with the school, and leave mediation as your last resort.

Now you want to keep records. We talked about that binder. I want to make sure that you understand that you want to keep this as an ongoing record of what’s happening. So you’re wanting to keep all of the documents, the notes, the emails in your binder. Every time you write the school, print out a copy of that email and the response so you have a paper trail of what’s happening.

You wanna stay connected, check in with the teachers and the service providers regularly. Send them notes of encouragement. If your child comes home and talks about something they really enjoyed, send that to them.

Keep that relationship as a positive one so that you’re working together and find ways that you can support them.

It’s going to help your child if they’re working on one task with their therapist once a week, and you know what it is, and can support that at home by working with them too.

So you’re working at this collaboratively. It’s not just a meeting. It’s the whole plan that’s surrounding your child. You want to be part of this plan, and you wanna ask for updates on your child’s progress.

Don’t wait until the next annual meeting to address concerns. Stay involved, stay communicating with it.

Now, this first meeting can seem overwhelming, but remember that you’re not the only one who’s been through this. You’re going to revisit and revise it as your child’s growing. You’re not locked into anything forever.

This first meeting is, that’s all it is. It’s the first meeting. You’re moving forward from here, and you’re going to come outta this meeting, and in six months you might feel that there needs to be a tweak or a change. Stay in touch with with your child’s team, with your child’s school. This is just the first step on a journey that’s going to last a lifetime, and you’re taking it to make sure that your child gets what they need to thrive.

You are your child’s best advocate. I can’t say that enough times. You get to know them better than anyone else that will ever sit around the IEP table.

Before you go, I know walking into your first IEP meeting can feel overwhelming. Trust me, I’ve been there. That’s why I created a free IEP meeting checklist with the 15 most important questions you should ask. This is the same checklist I wish I’d had during our early meetings. You can grab it completely free at waterprairie.com/iepmeetingchecklist.

Just enter your name and email, and I’ll send it right to your inbox. Print it out, bring it to your meeting, and feel confident knowing you’re asking the right questions.

The link is in the description below, and if this video helped you feel more prepared, please give it a thumbs up and subscribe for more special education tips.

You’ve got this, and I’m here to help you along the way. I’ll see you next time.

Q1. What does PLAAFP stand for and why is it important?
A1. PLAAFP stands for Present Levels of Academic Achievement and Functional Performance. It is the most critical section of the IEP because it outlines exactly where your child is currently performing and provides the legal basis for all services and goals that are recommended.

Q2. What is the difference between signing the IEP for attendance versus agreement?
A2. In most states, your signature on the IEP is confirmation that you attended the meeting. It does not necessarily mean you agree with the entire document. If you disagree, you can state your partial disagreement or utilize dispute resolution processes.

Q3. What should I bring to my child’s first IEP meeting?
A3. Bring an organized binder containing medical paperwork, any previous reports, a list of pre-written questions, and a Parent Input Statement outlining your child’s strengths, concerns, and future vision.

Q4. What should I do if the school uses an acronym I don’t understand?
A4. You have the absolute right to interrupt politely and ask for a definition. Phrases like ‘Excuse me, could you please clarify what LRE stands for?’ are necessary to ensure you are an equal partner in the discussion.

The post Episode #140: What to Expect at Your First IEP Meeting as a Parent appeared first on Water Prairie.