Water Prairie Chronicles Podcast

When Christopher was told in 6th grade he could take advanced classes OR get resource support, but not both, we pushed back and got both written into the plan. This post shares the full story plus 7 IEP meeting tips for parents to use when policy says no.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

When my son Christopher was in 6th grade, the team told us he could take advanced classes with peers OR get resource support — but not both. We refused that either/or choice. We pushed back collaboratively and got advanced classes with dedicated resource support written into the plan.

This episode breaks down the 7 IEP meeting tips for parents I wish I’d known then, so you can separate district promises from classroom reality and get support written in now.

Here is what you’ll learn in the video:

Federal law prioritizes individual student needs over convenience. If you’re hearing “pick one,” use these steps for special education advocacy that stays calm, clear, and collaborative.

This is a solo episode by Tonya Wollum, podcast host, parent to 2 children with disabilities, and Master IEP Coach®. The Water Prairie Chronicles supports parents navigating IEP meetings, 504 plans, and special education with practical tools and encouragement.

What has your team told you policy won’t allow? Watch the video above, then leave a comment and share this page with a parent heading into a meeting this month.

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 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!

Watch Next: Feeling overwhelmed about your upcoming meeting? Watch this next: What to Expect at Your First IEP Meeting as a Parent

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 September 29, 2026)

0:00 The Gap Between Policy and Classroom Reality

Tonya: If a school team has ever told you, “We’d love to help your child, but district policy just won’t allow it,” you might be surprised to learn that statement is often wrong. Just this past week in North Carolina, a headline announced a massive district initiative to raise special education test scores and graduation rates.

But when you read the comments from parents, the truth came out. High-level promises don’t fix what is happening right now in the classroom. There’s often a massive gap between district promises and classroom reality.

Whether your child is neurodivergent, like having ADHD, autism, or dyslexia, or has a physical disability, watching a school system focus on administrative metrics while your child falls behind day to day is exhausting. Today, I’m gonna give you seven clear, actionable steps that you can take right now to advocate for your child with confidence, no matter where you live or what district policy says.

0:52 A Personal Story of Fighting for Access

So to understand why these steps are so critical, you have to look at how rigid school policies play out in real life. When my son Christopher was at the end of sixth grade, we sat down for his annual IEP review. Christopher was academically capable of advanced high-level coursework. He had been in the Gifted and Talented program as an elementary student, and we wanted him to stay along with his intellectual peers.

But because of his specific learning profile, he also needed special education resource support for him to be able to thrive in the classroom. During that IEP meeting, the school presented me with a choice that made my jaw drop. They said, “He can either take the advanced classes with his peers, or he can get resource support. But he can’t do both because we don’t have a resource teacher assigned to work with the advanced track.”

I remember sitting in that meeting room feeling completely stunned and a little bit furious. I was really confused because I thought that all children would have that support if they needed it.

You may be feeling the same way. The system was essentially telling me that because my son needed learning support, he had to give up his access to advanced academics.

It felt like kids who were bright and capable but happened to process learning differently were being pushed down into lower expectations simply because of administrative scheduling convenience. Sometimes you’ll hear these kids referred to as twice exceptional or 2e students. They have a high academic potential, but they also have a learning disability or some type of accommodations need that their peers don’t have.

I did not accept this either/or choice for my son, and I pushed back against that policy then and there. I did it respectfully, but I didn’t accept that as the final answer. Because my family held our ground and kept the focus strictly on Christopher’s individual needs, the team did eventually agree with us.

They placed him in the advanced classes and scheduled a dedicated block of time for him to work one-on-one with the resource teacher on his specific goals, and it worked out fine. But that annual IEP meeting was a huge eye-opener for me. It showed me that parents can’t afford to accept district policy at face value.

So how do you take control of your child’s education when you run into these same types of barriers?

3:08 Seven Steps to Master Your IEP Meetings

I’m gonna give you seven steps now that every parent needs in their toolkit.

First, remember that the I in IEP stands for individualized. Districts love to cite broad rules, track limitations, and master schedules, but federal law is very clear. Support services are based on your child’s individual needs, not administrative convenience.

If a policy limits what your child uniquely needs to succeed, challenge that policy, but do it respectfully. Two, separate systemic promises from current reality. When a school board announces a multi-year plan or a new curriculum like mine is doing right now, remember that your child’s education is happening today.

Don’t wait for a district to solve its staffing or funding issues three years down the road. Focus on getting the exact supports, accommodations, and services written explicitly into your child’s plan right now.

Three, build a paper trail for everything. If a service isn’t written down, it doesn’t exist.

If a promise was made verbally in a meeting, follow up with a brief, polite email summarizing what was agreed upon. If accommodations aren’t being provided in the classroom, document the dates and what occurred. Written records are your strongest leverage in any meeting.

Four, never accept either/or compromises on academic potential. Neurodivergent students frequently face low expectations. Never let a school tell you that your child can’t access advanced curriculum, electives, or social opportunities simply because they receive support services.

Accommodations exist so students can access high-level learning, not to hold them back.

Five, treat the team as a collaboration, not a battle. It’s easy to get defensive when you feel your child isn’t getting what they need. But whenever possible, approach the table as a collaborator. Frame issues around shared goals.

For example, “We both want Joey to succeed in reading this year. Here is where the breakdown is happening during independent work time. How can we write support for this into the plan?”

And six, empower your child to know their own needs. As early as possible, involve your child in understanding their own neurodivergence, learning style, or disability.

Help them learn to speak up for themselves, whether that’s asking for sensory breaks, requesting a quiet study place, or using assistive technology.  Building their self-advocacy skills is the ultimate long-term goal.

And if you’re getting value from this, before we hit number seven, go ahead and hit the like button, and subscribe to the channel too.

5:37 Finding Support in Your Advocacy Journey

So number seven, bring a knowledgeable partner to the table. You don’t have to navigate this complicated system by yourself. Having an experienced voice in your corner, whether an advocate, a trusted friend who knows the process, or a certified Master IEP Coach®, changes the entire dynamic of a meeting. It gives you clarity, confidence, and peace of mind.

Parenting a neurodivergent child or a child with a disability takes immense dedication. It can feel exhausting to constantly push against systemic barriers. But please hear me when I say this,  your advocacy matters, and you’re not by yourself in this.

If you’re sitting there right now feeling overwhelmed by an upcoming meeting, confused by district jargon, or struggling to get your child the classroom support they deserve, I want to help you directly. Send an email to [email protected] with your top three concerns about your child’s current school plan.

I’ll follow up with you to arrange a time when we can talk on the phone about your concerns and decide if IEP coaching is a good fit for you These calls are free, and they last about 20 minutes.

If this episode encouraged you, please share it with another parent who might need a boost of confidence today.

Keep supporting your amazing kiddo, and I’ll see you next time.

1. Can the school make my child choose between advanced classes and IEP help?

No. When Christopher was in 6th grade, his team said advanced classes with peers OR resource support, but not both. We pushed back collaboratively and got advanced classes with dedicated resource support written into his IEP, because the plan must follow individual need, not scheduling convenience.

2. What does individualized actually mean in an IEP?

It means the plan is built around your child’s strengths and needs, not around what is easiest for the building. Ask what support looks like day-to-day in the classroom: who provides it, where, and for how long. If it is not written with that level of detail, it is not yet individualized.

3. What should I say when the team says policy won’t allow it?

Stay calm and collaborative, and ask for specifics in writing. Try this line from the video: “We both want Joey to succeed in reading. How do we make resource support happen inside the advanced class?” Then follow up by email to document what was offered, what was refused, and what data the decision was based on.

4. How can I help my child start speaking up at school?

Start with one practiced sentence they can use in class, like “I need help breaking this direction into steps.” Role-play it at home so it feels familiar, then share that sentence with the teacher so everyone reinforces the same skill. That small step builds the self-advocacy muscles they will need in every future IEP meeting conversation.

The post Episode #159: They Told My Son He Couldn’t Do Both: How I Pushed Back 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, Tonya Wollum (Master IEP Coach®) explains why the word “lazy” is often used to describe children who are actually hitting an “invisible wall” at school. Whether your child has ADHD, Autism, Dyslexia, Dysgraphia, or Anxiety, the school system often sees the behavior (meltdowns, non-compliance, or falling behind) instead of the neurological cause.

What we’ll cover:

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/

Watch Next: Feeling overwhelmed about your upcoming meeting? Watch this next: What to Expect at Your First IEP Meeting as a Parent

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 July 30, 2026)

Full Transcript of Episode 158:

Tonya: What if I told you the reason your child is struggling in school isn’t what you’ve been told, and it’s not what you’re afraid it is either? I’m Tonya Wollum. I’m a master IEP coach, and I’m also a mom who had to watch my son sit on the sidewalk during recess because he didn’t finish his math work, not because he was lazy, but because he had dysgraphia and literally couldn’t write fast enough.

His teacher knew about his IEP. He told me he just thought he was being lazy.

If you’ve ever stayed awake at night wondering why your child is falling apart at school when you know, you know they’re smart and capable and trying their hardest, stay with me. By the end of this video, you’re going to understand what’s really happening with your child, why the school might be missing it, and the one thing you can do right now this week to start turning things around.

Let’s start with the one word I want you to erase from your vocabulary when you think about your child, and that word is “LAZY.”

Here’s what I want you to picture. Imagine you show up to work tomorrow and everyone else gets a standard keyboard, a standard monitor, and a standard desk setup. But you, you get handed a keyboard where half the letters are missing, and nobody told you. You’re expected to type the same emails, the same reports at the same speed as everyone else.

By 10:00 AM, you’re exhausted. By lunch, you’re falling behind. By the end of the day, your boss calls you into the office and says, “We’ve noticed you’re not keeping up. You need to just try harder.”

That’s what school feels like for a child with an invisible disability: ADHD, autism, dyslexia, dysgraphia, anxiety, auditory processing disorder. These are real neurological differences. They’re not behavioral choices, and when the child with one of these conditions is expected to perform like a neurotypical child, the gap isn’t effort.

The gap is the missing keys on that keyboard. Here’s something most people don’t think about, and it changes everything once you see it.

A typical school day for a neurotypical child is just a school day. They navigate it. They have ups and downs. They go home. They’re tired. They recover. But for a neurodivergent child, every single hour is an active endurance test. Sensory overload in a noisy classroom. The mental exhaustion of filtering out every background just to hear the teacher.

The social calculations. “Did I say the right thing?” “Did I make the wrong face?” “Are they looking at me?”

The sustained focus required to read when the letters won’t stay still. The fine motor struggle of writing when the brain and the hand won’t coordinate.

By the time your child gets home, they’ve been running a marathon you couldn’t see, and then you ask them to do homework and they melt down.

And the school sees that meltdown and says, “Behavioral issue.” But what they’re missing, and I didn’t figure this out for years with my own kids, is that your child isn’t giving you a hard time, they’re having a hard time. Their tank is empty.

That’s not even the hardest part to hear. Wait until you see what happens next.

This is the one thing I almost didn’t include. It’s the part that hurts the most as a mom.

Here’s the truth: most children with invisible disabilities don’t know that they’re working harder than everyone else. They don’t have the metacognition, the ability to think about their own thinking, to compare their experience to a neurotypical child’s experience.

They just know school is hard. They know they feel different, but they can’t articulate why, so instead, they tell themselves what they hear from the adults around them. I’m not trying hard enough. I’m just bad at this. Something’s wrong with me

My son couldn’t tell me that dysgraphia made writing physically painful. He couldn’t explain why he could tell you the answer verbally, but he couldn’t get it onto the paper. So instead, he looked like a kid who just didn’t want to do the work, and the adults around him treated him like a kid who just didn’t want to do the work

One teacher told me during his seventh-grade year that he was a good kid. She genuinely liked him, but she kept sending him to in-school suspension for noncompliance. He wasn’t refusing. He had ADHD and needed direct individual instruction to shift his focus. She’d give a direction to the whole class, and he simply didn’t register it.

It wasn’t defiance, it was his neurology

This is where parents get stuck, and this is where I want to help you

If you’ve been nodding along with any of this, here’s what I want you to know. I do this work because I’ve been exactly where you are. I offer free 15-minute consultation calls for parents who want to talk through what’s happening with their child’s IEP.

Send me an email at [email protected] with your top three concerns about your child’s education, and we’ll schedule a time when we can talk. No pressure, just a conversation to see if coaching is the right next step for you.

But stick with me because point four might actually be the one that changes how you approach everything.

Here’s the uncomfortable truth most people won’t say out loud. Schools are designed to manage groups of children efficiently, and efficiency rewards compliance.

A child who sits still, stays quiet, and turns in their work on time, that’s a good student in the system’s eyes. A child who can’t sit still because of ADHD, or can’t stay quiet because of anxiety, or can’t turn in work on time because of executive function challenges, that child disrupts the system, and the disrupted system reaches for the quickest tool in the toolbox, and that’s usually discipline.

The system demands compliance because it’s easier to manage, but demanding compliance from a neurodivergent child is like taking them to the eye doctor because they’re squinting to see the board.

The doctor says, “Your child needs glasses,” but the school says, “No, your child just needs to try harder to see. If they just squint a little bit more, they’d read the board just fine.” That sounds absurd, right? No one would accept that for vision.

But that’s exactly what happens with invisible disabilities every single day. The school can’t see the disability, so they treat the symptom, the behavior, instead of the cause, and your child, your child learns a devastating lesson, “The adults think I’m choosing to fail.”

I saw this play out in the most heartbreaking way with my own son. In elementary school, he had a teacher who made him sit on the sidewalk during recess because he didn’t finish copying his math problems from the board and answering them. He wasn’t able to finish the written work due to dysgraphia, a documented disability on his IEP.

His teacher actually told me he knew my son was just being lazy and didn’t want to do the work. He wasn’t able to see that my eight-year-old, who wanted to be able to take pride in his own work instead of being punished for a writing disability, really just wanted to do the work. The school couldn’t see the disability, so they treated the symptom, the behavior, instead of the cause, and that’s exactly why your voice as an advocate is the most important one in the room.

Let me leave you with this. You know your child in a way no teacher, no administrator, no IEP team ever will.

You see the bedtime anxiety. You hear the stomach aches on Sunday night. You feel the tension when you open the backpack and find another note home. You know deep in your gut that your child is not choosing to struggle.

If you take nothing else from this video, take this: trusting your instinct isn’t being difficult, it’s being your child’s best advocate.

The parents who become my coaching clients often think, “I thought it was just me. I thought I was overreacting.” And I remind them, “You’re not overreacting. You’re seeing something real, and you’re the only one in the room who sees the whole picture.” The school sees your child for six hours. You see the before, the during, and the after.

I want to give you one concrete action to take this week. Start a simple log, nothing fancy, a notebook or a notes app. Every day, write down one thing. What happened after school? Was there a meltdown? Was your child withdrawn? Did they say something that worried you? Over a week or two, you’ll start seeing patterns.

Those patterns are data, and data is what you bring to the IEP table.

The pattern I saw when my son was in elementary school was the number of days he told me after school, “I made my teacher mad again today when I started crying.” That pattern gave me the input to know I needed to ask more questions and help his teacher sort through what was happening so he and my son could work together and have a positive experience.

It wasn’t an easy task, but listening to my son allowed me to get him the help that he needed to ease his anxiety about going to school each day.

Here’s what I want you to remember: your child isn’t lazy, they’re not broken, and they’re not alone, and neither are you. I mentioned earlier that I offer free 15-minute calls for parents who want to talk through their child’s situation. That invitation is open right now. You don’t need to have it all figured out.

That’s actually the point. Most parents come to those calls carrying months or years of frustration, and just having someone listen who understands the system and has been in your shoes, that alone is worth the conversation.

So here’s what you need to do. Send an email to [email protected]. It’s coming straight to me. In your message, tell me the three things keeping you up at night about your child’s education. That’s it. You don’t need to write a novel, three bullet points. I’ll read them, and we’ll find a time to talk. Sometimes that one call is all a parent needs to know they’re on the right track, and if it turns out that coaching would help, we’ll talk about that too.

No pressure, ever.

If this video spoke to you, I think you’ll also want to watch the one I made called “What to Expect at Your First IEP Meeting as a Parent.” Whether you’re going into your very first meeting or if you’ve been through several and still feel like you don’t know what to expect, that video walks you through exactly who will be in the room, what they’ll talk about, and how to walk in feeling prepared instead of panicked.

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

The post Episode #158: Understanding Invisible Disabilities in School: Moving Beyond the ‘Lazy’ Label appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Sharp knives and hot stoves don’t have to keep your child out of the kitchen—discover how simple adaptive tools unlock total culinary independence.

In this episode, host Tonya Wollum sits down with Ivy Prince, founder of Cooking Capable, live from the Disability & the Church Conference. Cooking Capable is an organization in South Carolina teaching culinary life skills to individuals with disabilities aged 3 to 73.

Ivy shares practical kitchen safety strategies, adaptive tools (like cutting gloves, slap chops, and knife guards), and simple recipe frameworks that empower children and young adults with disabilities to safely cook nutritious meals. Learn how kitchen confidence directly translates to life confidence!

1. Focus over Distraction: Children who seem easily distracted often develop unexpected focus in the kitchen when preparing foods they love.

2. Safety Through Early Exposure: Keeping kids out of the kitchen makes cooking exponentially more dangerous as they grow older. Early, guided exposure builds lifelong safety habits.

3. Essential Adaptive Tools: Tools like Slap Chops, cut-resistant gloves, finger guards, and stabilization hold-downs allow individuals with motor or visual challenges to cut safely.

4. Simplify to Build Confidence: Start with 3-step recipes, one-pot meals, and oven cooking (which reduces burn risks from stove splatter).

Cooking Capable Website: https://sites.google.com/view/cookingcapable/

Contact Ivy Prince / Support Cooking Capable: [email protected]

Some Recommended Adaptive Tools (Amazon):

* Ivy is still working on getting her Amazon Associates account together, and I will link her page here once it is ready to go.

(The above links are the Water Prairie links, and, as an Amazon Associate, I may earn from any purchases made after clicking these links.)

Watch Ivy’s Live Workshop Video: [I’m still editing this one! ]

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/

Ivy Prince is a passionate advocate, high school student from South Carolina, and the founder of Cooking Capable—an organization dedicated to teaching essential culinary life skills to individuals with disabilities aged 3 to 73.

Ivy’s drive stems from a deeply personal place. Growing up alongside three siblings with diverse needs—an older sister with autism, a younger sister with Down syndrome, and a brother with learning disabilities—Ivy saw firsthand how society often underestimates the capabilities of individuals with special needs. Watching her parents encourage her siblings in the kitchen taught her that food preparation isn’t just about making meals—it’s a powerful doorway to self-reliance, motor development, and personal pride.

Through Cooking Capable, Ivy uses a hands-on, peer-to-peer approach to teach adaptive cutting techniques, kitchen safety, and simple recipe strategies. Whether working with young children, teenagers, or older adults, Ivy is on a mission to eliminate kitchen barriers and empower every participant to discover their own clear path to culinary independence.

(Recorded April 22, 2026)

Full Transcript of Episode 157:

Tonya: When we look at our kids with disabilities in the kitchen, we often see a wall of barriers. Sharp knives, hot stove splatter, and sensory overload. But what if the kitchen isn’t a barrier at all? What if it’s a clear path to building deep confidence, unexpected focus, and long-term independence? Today, I’m talking with Ivy Prince, the founder of Cooking Capable, to learn the simple shifts and accessible tools you can use right now to make your child truly kitchen capable.

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

At the recent Disability & the Church Conference, I had the privilege of watching a live cooking workshop led by Ivy Prince. Ivy is the founder of Cooking Capable, an incredible organization based in South Carolina that teaches culinary life skills to individuals with disabilities.

Her passion comes from a very personal place, growing up with three siblings with diverse needs.

Right after her workshop, Ivy and I sat down for a quick chat to answer some of the most pressing questions parents have about kitchen safety, adaptive tools, and how to build independence at home. Let’s listen in on my conversation with Ivy

This is Ivy Prince. I just attended her cooking class demonstration here at Disability & the Church and I wanted to speak with her a little bit just to have her share more of what she’s doing and how you can learn a few things from her of what you can do with your kids.

So, just five quick questions that we have here. First of all, welcome to Water Prairie.

Ivy: Hi, I’m glad to be here.

Tonya: Ivy, you started Cooking Capable because of your siblings. So Gray, Lily, and JP are the siblings that we’re talking about.

As a sister who’s been in the kitchen with them, what’s one thing that you realized about their capability that may not be obvious to the rest of the world?

Ivy: I think, well, with each of them it’s very different. Um, different disabilities. Some are more hidden than others. With my older sister, I grew up cooking with her. She’s two years older than me. I looked up to her for everything, but especially for cooking. She was always so intelligent.

She brings so much to the table with recipes and tricks to use when I’m cooking. I think the biggest thing with her was I don’t think people realized how truly intelligent she was. People would say, “Oh, she’s shy,” or, “She doesn’t really talk.” I was like, “You have to actually have a conversation with her before you can say those things.”

Because she loves, to share about her interests and her passions. With my younger brother, I think with him is people don’t realize how focused he can be. A lot of people see him as a kid that is bouncing around, and he is. He still is that way. He’s been that way since he was born.

He’ll be bouncing around, though, in the kitchen. We put him in the kitchen, and he can stay super focused if it’s a task that he really loves or it’s a food that he wants to eat. That was something, my parents are really good at, is, getting us to learn how to cook. Their thing was, “If you cook, you get to eat what you want.”

So he would be very focused. With my little sister, she’s four years old, and it’s just how interested a four-year-old is in cooking them, because she looks up to her big siblings. I think just how interested she is and how much she wants to be a part of it, I don’t think people realize that.

Tonya: Excellent. So the rest of the questions you’re gonna know now from that answer- Mm-hmm … what her expertise is here. She’s young, but she’s coming with a, a lot of experience here. I wanted to ask a little bit about some safety things.

Kitchens can be really scary for parents, and I know whether their child’s visually impaired or intellectually challenged with some different areas that, that they’re working on, there, there’s a lot of concerns. You’ve got heat. You’ve got knives. You’ve got literal dangers that, that every parent knows.

And they may be a little bit afraid to let their kids start working in the kitchen. What are some ways that they can adapt their kitchen for a disability that the child may be working with?

Ivy: Um, so a lot of, uh, what we use in our workshops is we use a lot of adaptive tools.

We have something called a slap chop. You can put a food inside it, um, and then all you have to do is literally slap it and it’ll dice the food. Um, we’ve done different, uh, ooh- Like others, we have knife, uh, guards. We have, uh, specifically cutting gloves. We have, um, metal pieces that you can put on your hand.

You have something that can help hold the food so your arm is up above. Um, it’s kinda hard to explain without having it to show, but we have a lot of different adaptive tools. Um, if you research on Amazon has all of those tools available. And then I think another thing is I believe it’s very important for safety, um, is to try, just try teaching.

I think, uh, um, as they get older and when they, um, start trying to be more independent, if they didn’t have someone to teach them when they were younger- Right … um, it’s going to be m- um, exponentially more dangerous as- Right … they get older. So just trying something and seeing what works.

Tonya: I will add to that, too.

Um, on her website she has a page that has the links to all of her things, and it’s an Amazon Associates page that she has. So I’m gonna put that link in the show notes so you can go to her website and see the tools that she’s talking about to get some ideas. Okay. All right, so let’s go on.

When a child finishes one of your workshops, um… And, and, and, and she w- she works with people from age three up through how old?

Ivy: 73.

Tonya: 73, but, but we’re thinking about, about kids right now. Mm-hmm. So for parents that are listening here, so when, um, when a child finishes one of your workshops and they realize that they can actually make a nutritious meal for themselves, how does that change their confidence outside of the kitchen?

Ivy: I think, um, for a lot of our participants, ’cause we’ve had pl- um, many who come in, um, uh, either they had no experience or they, uh, one said, “That’s Mom’s job. Mom makes all the food.” Oh, yeah. Um, and by the end they were making the food, and you could just tell by the look in their eyes how happy they were that they got to create that food.

Um, I had another participant, he came up to me, the same one who said, “Mom cooks.” And he goes, “Thank you for the food.” And I turned to him, I was like, “Thank you for making the food,” and just watching the confidence light up in his eyes. He’s like- Oh, yeah … “Oh, yes. That’s right. I did that.” Um, I think it teaches, uh, when you go into something new and you go into something challenging, um, to just try.

With cooking, um, a lot of people see disability in the kitchen. They see a line in between. Mm-hmm. They see a lot of barriers. Um, with Cooking Capable, we’re trying to show them that there is a clear path.

It might look different than someone else’s clear path, but there is a clear path. So when, um, they’re trying something that isn’t necessarily kitchen related, um, that they look for that clear path for them as well.

Tonya: Nice. I like that. And, and I know our listeners can, can relate to that.

You do these workshops and clinics and all where you’re coming in and doing it. Thinking about at home, so for a parent that’s listening to this, they’re not anywhere near you, and they want to do this themselves how do they get started?

Ivy: I think, recipe-wise, I love to do three-step recipes.

Anything that, is very, simple instructions, and another thing is one-pot meals, where everything goes in the same thing. Your safest choice, I believe, is the oven. Making sure you have long enough, oven mitts, and then

there’s a lot less, worry about the food splatter when you’re working in the oven.

A lot of those type of recipes I would say are the best.

Tonya: Right. Excellent. On your website, do you have recipes?

Ivy: I do not.

I have all the recipes in a file. One of my goals one day is to be able to write a book, but I think that would be a good idea to go ahead and get them on the website.

Where to Connect with Cooking Capable

Tonya: Well, if, if our listeners want to get in touch with you, so what is your website, and how else can they get in touch with you?

Ivy: It’s Cooking Capable With Ivy.

Tonya: We’ll double-check that and put it in the show notes for you so you can find that.

Ivy: And then email is [email protected].

Tonya: Okay, so that’s easy. And we’ll put that in there, too.

So you’ll have all the links. Always, if you ever miss it, just send me a note. I’ll, I’ll pass it on for you. And, um, so now I want you to watch her demonstration. Um, it, it’ll be edited a little bit, but you’ll, you’ll be able to see her doing a workshop that, that she held today for some parents that came in, and it, it, it really was fun to wa- to watch her working but also to see the response of the parents.

What a great reminder that our kids are often capable of so much more than the world gives them credit for. Ivy’s insights on using simple three-step, one-pot recipes and the safety of oven cooking are excellent starting points for any parent wanting to open up the kitchen to their child. If you want to check out the adaptive tools Ivy mentioned, like the SlapChop, knife guards, or cutting gloves, I’ve linked her Amazon Associates page in the show notes, along with her website and direct email.

As many of you know, funding is shifting for grassroots organizations like Cooking Capable, and their current grants are wrapping up this year.If you run a church ministry, a community group, or if you’re a donor looking to back a project making a tangible, everyday difference in the disability community, please reach out to Ivy.

Let’s help her keep these vital programs fully funded. And make sure you check out my video from directly inside the Disability & the Church Conference. I recorded part of Ivy’s live workshop so you can see these adaptive tools and strategies in action, and I put the link in the show notes for you.

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

Q1. How can I safely teach my child with disabilities to use a knife?

A1. You can start by using adaptive safety equipment such as cut-resistant gloves, metal finger guards, or alternative dicing tools like a Slap Chop that eliminate contact with exposed blades.

Q2. What are the safest cooking methods for kids with fine motor delays?

A2. Oven baking in combination with long oven mitts is often safer than stovetop cooking because it eliminates hot grease splatters and reduces active handling over high heat.

Q3. How do I keep my child from getting overwhelmed in the kitchen?

A3. Begin with simple 3-step recipes or one-pot meals. Breaking cooking down into concise, predictable steps keeps sensory input manageable and prevents frustration.

Q4. At what age can children with special needs start learning kitchen skills?

A4. Children as young as 3 years old can begin participating in simple, safe kitchen tasks alongside family members to build interest, familiarity, and fine motor control.

Q5. How does learning to cook help a child beyond the kitchen?

A5. Mastering a tangible life skill like cooking creates a boost in self-esteem. When children realize they can overcome a challenging task, they approach non-kitchen obstacles with greater confidence.

Q6. Where can I find adaptive cooking utensils for my child?

A6. Many effective adaptive kitchen tools—including specialty cutters, safe guards, and weighted utensils—are readily available on online marketplaces like Amazon under adaptive kitchen supplies.

The post Episode 157: Safe Cooking With Disabilities appeared first on Water Prairie.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Key Takeaways

When the final school bell rings in June, parents of children with disabilities often breathe a sigh of relief. The relentless cycle of tracking academic benchmarks, updating accommodations, and attending intense meetings pauses for a brief season. However, our children’s personal development does not take a summer vacation. True learning beyond classroom parameters occurs in every public interaction, every community park, and every neighborhood sports field we allow them to access.

Last week, while sitting in the bleachers at a collegiate summer league baseball game, I witnessed a disruptive display of poor sportsmanship, entitlement, and boundary-crossing from a visiting team. The officials and coaches offered nothing more than soft warnings, leaving the surrounding families exposed to toxic dynamics. It was an uncomfortable reminder of what happens when leadership defaults on character modeling.

For parents raising neurodivergent children or children with disabilities, this ballpark scenario offers a critical insight. When educators, therapists, or youth coordinators lower their behavioral bars out of convenience or pity, they act exactly like those passive umpires. If we do not hold our children to a high standard of personal accountability and respect, we fail to prepare them for independent life as adult citizens.

Use these summer months to actively change that narrative. Seek out new community environments. When you encounter an exposure that lacks integrity, transform it safely into a powerful teaching moment about dignity and self-regulation. By expanding our kids’ horizons with learning beyond classroom structures and actively volunteering within summer programs, we help shape the values and standards our children deserve.

Don’t let the “May-cember” chaos distract you from the paperwork that matters most. Download this free printable checklist to guide you through the next few weeks and ensure a smooth hand-off to your child’s new school team.

Download the Checklist Here.

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 newsletter? If not, subscribe at https://waterprairie.com/newsletter

Support the 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 June 29, 2026)

Full Transcript of Episode 156:

Tonya: What if the most important lessons our children learn this summer have absolutely nothing to do with a classroom, a textbook, or a grade level? Last week, a chaotic moment at a baseball game completely changed how I view our roles as parents this season.

Let’s talk about what happens when the lines of character are crossed and how we can protect the standard our kids deserve.

Hi, everyone. 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.

For most of the US, summer is officially in full swing, and if your house is anything like mine, that means the rhythm of the school year has faded, and a brand-new rhythm has taken its place.

For many families, summer means camps, outdoor pool days, neighborhood gatherings, and sports. In our family, summer means baseball. One night last week, I was sitting in the bleachers watching a collegiate summer league game. My son plays for the home team, so of course I’m always rooting for them. But as I sat there watching the game unfold, I found myself focused on something happening completely outside the lines of the baseball diamond.

The visiting team’s dugout was incredibly loud, but not with standard team spirit. From the first inning, there was a constant stream of heavy profanity. The players and even some of the coaches were aggressively heckling the home team, shouting deeply personal comments about the players’ families and rudely talking back to the spectators in the stands.

They even openly ignored the facility’s strict rules regarding why metal cleats weren’t allowed on that specific turf field. The umpires tried to issue a few soft warnings to quiet down the dugout, but underlying behavior didn’t change. At one point, a home team father in the stands finally had enough. One of the players from the other team had been tracking the speed of his pitcher and said something very rude to one of the home team players when he struck out.

The response by this dad was to say something like, “That’s uncalled for.” Without missing a beat, the college player sneered back and said, “What are you, 60?” The dad responded perfectly. He said, “I may be 60, but I saw as much of the field tonight as you did.” I was surprised at the response, but I admit that I had to chuckle a little bit.

A dad from the visiting team didn’t see the humor in the exchange and started yelling at the dad on our team. It was building to a potential mess. While we never wanna see tension escalate beyond parents and players in the stands, and for a moment, I was genuinely worried a physical fight might break out between the two parents.

That interaction stayed with me. I walked away from the field that night feeling deeply frustrated. I kept asking myself, “Where did things go wrong here? Is this a breakdown of leadership in the sports program? Is it a reflection of this generation’s upbringing?” After the final pitch, I had the opportunity to chat with one of our home team’s coaches.

This is a man who has coached at every level of the game, from local recreation leagues all the way up to training professional athletes. I told him how disappointed I was in the lack of authority used to control the field, and he gave me a piece of wisdom that completely reframed my frustration. He looked at me and said that until a player is officially being paid to play as a professional, a coach’s number one job is to teach character.

He said if a coach isn’t actively building character through the game, they are completely letting those young men down. He pointed out that the vast majority of these players will not make baseball their lifelong career, but the lessons they learn while playing with the team will follow them for the rest of their lives.

That visiting team’s coaching staff missed a massive, beautiful opportunity to help develop those college athletes into strong, respectful, mature men. Instead, they allowed them to act like immature children playing a big kid’s game. But here’s where the story shifts.

While a few players on our home team unfortunately allowed themselves to get dragged down to that level for a moment, the majority of them kept their heads up. They stayed completely focused on the game. They kept their dugout clean. They protected the environment, and because of that, families and young children felt perfectly safe sitting right next to them.

It was fun watching the home team players talking to any young children who came to the side of the dugout to ask for an autograph or to return a foul ball they had found. I remember how special my son always felt at that age when an older player would pay attention to him for even a few seconds, and I appreciated this team being able to continue setting a positive example for the local fans who came out to support them.

As I drove home that night wearing my hat as an IEP coach and a disability advocate, I started processing this through the lens of our beautiful community. As parents raising children with disabilities, neurodivergencies, and medical complexities, we spend so much of our energy focused on the formal learning environment. We spend hours in IEP meetings, checking off compliance boxes, measuring academic benchmarks, and making sure accommodations are met within the four walls of a classroom. But the truth is, true learning reaches far beyond the classroom. Our children’s development doesn’t stop when the last school bell rings in June.

Real-world learning comes from every single exposure, every environment, and every interaction we allow our children to have. Our job as parents isn’t just to shield our kids from the world. It is to identify when those external exposures don’t measure up to the standards, integrity, and values we want our children to model, and then respond accordingly. Think about the umpires at that game. They saw the bad behavior, but they gave soft warnings. In our children’s lives, when school teams, therapists, and community leaders lower their expectations out of pity or convenience, they’re giving a soft warning to bad behavior.

When we don’t hold our children to a high standard of personal accountability, respect, and emotional growth, we miss the opportunity to help them become solid, independent citizens.

So let’s turn this into a positive challenge for all of us this summer. Instead of worrying about what we can’t control, let’s lean into what we can control. You are doing a beautiful job navigating this parenting journey, and summer is the perfect canvas to try something new. I want to challenge you to do two things over the next few weeks.

First, actively look for new exposures for your child. Take them to the local baseball game, the community pool, a new park, or a summer camp. Let them see how different groups interact. If you happen to encounter an environment that lacks integrity, like the one I saw at the baseball field, don’t panic. Use it as a safe, powerful teaching moment. Talk to your child about what dignity, respect, and self-regulation look like in real life.

Second, get involved and fill the gap. Our children are often led by wonderful but exhausted camp counselors, lifeguards, and youth coaches. This summer, consider volunteering. Step up to help pack the snacks, cheer from the sidelines, or help manage the group.

When you are present, you aren’t just supporting your own child. You are injecting your values, your encouragement, and your standard of integrity into the entire group. You become an active part of the leadership structure. We are raising children to build lives of purpose, respect, and strength.

Let’s use these summer months to show them that the scoreboard doesn’t measure that character. It’s measured by how we carry ourselves on and off the field. Thanks for tuning in today. Keep doing an amazing job.

Stay encouraged, and I will see you right back here in two weeks with a special guest who is teaching safe cooking skills to teens and adults. And she’s still in high school. You don’t want to miss meeting Ivy Prince and hearing what she’s doing with Cooking Capable. I’ll see you then.

Q1. How do I ensure my child is learning valuable life lessons outside of the school year?

A1. Summer learning comes down to intentional exposure. By placing your child in community environments like sports games, neighborhood pools, or summer camps, you expose them to real-world social dynamics that test and build their character.

Q2. What should I do if a camp counselor or youth coach has low expectations for my child?

A2. When leaders offer soft warnings or lower standards out of pity, it stunts your child’s growth. Address this directly by establishing clear boundaries, or consider volunteering to actively model structural accountability.

Q3. How can I turn a negative community experience into a teaching moment for my child?

A3. If your child witnesses poor behavior or a lack of integrity in public, don’t panic or withdraw. Use it as a calm, conversational blueprint to discuss what dignity, self-regulation, and respect look like in action.

Q4. Why is character development prioritized over simple behavioral compliance?

A4. Compliance simply means following rigid rules inside a managed classroom. Character development ensures that when your child transitions into adulthood and encounters unmonitored spaces, they possess the internal moral framework to carry themselves with dignity.

Q5. How can busy parents actively impact the leadership quality of summer programs?

A5. The most effective approach is to fill the gap directly. Volunteering to pack snacks, assist on the sidelines, or coordinate group activities allows you to infuse your personal standards of integrity into the group dynamics.

The post 156. Teaching Character and Boundaries to Our Kids appeared first on Water Prairie.

Discover how home-based visual schedules, first-then boards, and token charts can minimize behavioral meltdowns and lower parental anxiety during summer break.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Summer break is supposed to feel like an open, relaxing window of time, but for parents raising children with disabilities, losing a predictable school routine can quickly spike caregiver burnout, trigger behavioral meltdowns, and fuel underlying anxiety.

In this archival deep-dive episode of The Water Prairie Chronicles, host Tonya Wollum connects with veteran mother and special education advocate Kristin Evans to talk through practical, front-loaded strategies for engineering successful school breaks. Together, they walk through the concrete mechanics of implementing home-based visual schedules, customizing first-then boards using actual household photography, and introducing token boards that celebrate positive behavioral steps. Kristin shares her real-life experience handling routine shifts with her daughter Bethany and navigating weekend tracking with her son.

Whether your family is gearing up for an extended summer vacation, preparing for out-of-town guests, or simply trying to make weekends more peaceful, this episode delivers step-by-step guidance on creating structure that fits your unique child’s developmental path.skills over the summer.”

Connect with Kristin:

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!

(Originally Released in 2022)

Full Transcript of Episode 155:

155 Repurposed interview with Kristin Evans on summer breaks for kids with disabilities

Tonya: Summer break is supposed to be a relief, but for parents of children with disabilities, losing the school routine can trigger a massive spike in anxiety, behavioral meltdowns, and pure caregiver exhaustion. If you feel like you’re drowning in unstructured days right now, then this episode was recorded just for you.

Welcome to The Water Prairie Chronicles, the podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and today we’re opening the archives to revisit a foundational conversation with Kristin Evans about engineering successful school breaks. Whether your child thrives on intense predictability or just needs a warning before transitions, Kristin’s practical parent-tested strategies for visual schedules, token boards, and boundary setting are exactly what we need to hear right now.

Let’s listen in as Kristin and I discuss why our kids thrive on this anticipation.

Kristin, we were talking about structure, so why is it important for us to have structure for our kids during the breaks?

Kristin: Well, I think we all thrive on structure, some people more than others. When you have a child who has something extra going on, um, either a physical, medical, um, developmental, mental health disability, it just helps so much to have that anticipation of, okay, I know what’s happening next. And when you have a child who has, um, intellectual disabilities, like my daughter, or a child with autism who just thrives on that structure, having that visual can help calm anxiety.

It helps calm that stress, and, um, just makes the day flow a whole lot easier and makes life a little bit more enjoyable for everyone.

Tonya: I’m laughing a little bit because for me, when my children were younger, this was a piece that I struggled with, was keeping structure for them in the summertime because it was easier just to go, go with the wind with it.

Mm-hmm. But it wasn’t easier for them. As, as you say- Right … it’s the structure that was there. And w- and we tried different things at different times that so- some of them worked, some, some of them didn’t. But, um, but I did find that if I could get that organized upfront, it made it a lot easier for us. But, um- Mm-hmm

but I am remembering some- Mm-hmm … of those frustrating years where I did nothing. Mm-hmm.

Kristin: And yes, and so the structure, it helps lower meltdowns. You know, it helps with transitions. Mm-hmm. Um, and I think just me having my own schedule helps with that too. You don’t feel as, um, flustered about trying to think about what’s coming next.

Um, so it actually helps the whole family.

Tonya: Well, I’m thinking about that. You, you had mentioned in the last interview that, um, you know, making sure that we’re taking care of ourselves as parents.

Kristin: Mm-hmm.

Tonya: And you can do that if you’ve kind of gotten yourself organized and gotten the structure together, so then you could- Right

build in that time to be able to, to have that-

Kristin: Exactly …

Tonya: downtime yourself.

Kristin: I was just thinking about that. As you plan out the schedule, it’s thinking, okay, Bethany still takes naps at 12, that’s gonna be my little snippet of time for some mental health and, and personal time. Now, not every child at 12 takes a nap, obviously.

Right. But, you know, if your child can play independently, if there’s something they really enjoy that they’ll engage in and play independently in- Yeah … that’s your time. Yeah. So, you know, trying to strategically plan out that schedule, um, and, and for the child, it doesn’t- necessarily matter what order things are done in, as long as they can see, okay, first we’re gonna eat lunch, then we’re gonna go potty, then I get to play with my tablet, or whatever it is.

Right. Um, doesn’t really matter what order, but you can strategically plan those out to help yourself as well.

Tonya: And it, and it could be a similar schedule for each day, or would you mix up the schedule?

Kristin: I would recommend doing as similar as possible-

Tonya: Okay …

Kristin: each day. Now, for, like, play outside might look differently.

Maybe one day you play in the yard, maybe one day, um- Right … you kick the ball, or, you know. But just try to… Or, um, having a picture of your vehicle, and I do recommend taking actual pictures. It is so much- Mm-hmm … more effective than the generic stick people or the-

Tonya: Right.

Kristin: You know, you can get a lot of free stuff online, but, and it takes, it takes more time, but I just highly recommend taking actual pictures of stuff around your house, um, that your child actually does, their favorite activities.

And so if you take a picture of your vehicle, maybe you’re not going to run the same errand- But, you know, if you try to… And, and, and it’s hard to do this. I’m, I’m saying all this like-

Tonya: Like it’s

Kristin: easy … do your same schedule every day. Ideally, and I know that’s incredibly difficult, ’cause then, you know, you have things that happen.

You have a meltdown that happens. You have a… But in general, if you can have the flow go very similar every day, you might have eat lunch, okay, now we get in our car.

Tonya: Right.

Kristin: It may not be the same errand, but that helps your child know, it helps them mentally prepare and transition, “Okay, we’re gonna go to the car.”

So we’re going somewhere now. And the more- Right … the more repetition, the more it’s the same, it, just the more it helps. I, you know, it just, it, it just, you get into the routine, transitions go smoother. And j- I know … as much as you c- as much consistency as possible-

Tonya: I know, we got to the point- … which is practical

Kristin: for you

Tonya: we got to the point when my kids were older where I knew I had to at least give them a warning of change that was coming. Right. And so- Right … so we kind of got to that point where it wasn’t, I didn’t have to have everything planned out, but I did have to know that- Mm-hmm … 10 minutes before we’re gonna stop the Legos- Right

we need, we need to, to start talking about stopping the Legos so that you could finish that last piece that you’re doing or-

Kristin: Mm-hmm …

Tonya: kind of find a way. And then everyone was a lot happier when we, when we had that, that expectation. Yes. So, so-

Kristin: Yes, I’m glad you brought that up. Timers, we use timers- Okay … all day long.

Um, timers are huge, and visual, for children who, um, really need that visual cue, um… I wish I had it with me. I don’t have it with me right now. Um, but a, but a Time Timer, it doesn’t have to be that brand, ’cause those can be a little pricier. Um, but it has that visual of the red as it’s ticking- Okay … and getting smaller.

Tonya: Mm-hmm.

Kristin: Um, that helps children who need that strong visual. Right. Also, on your phone, there’s lots of apps, and you can put it, um… We’ve never actually done this on Best Tablet, but we should do this. Um, download apps that are kid timers, and they have a visual of- It’s like a puzzle piece, you know, that’s, that’s coming full circle.

Oh. And so they can see, okay, I have this much left of the fish that’s not developed yet. Right. Um, and so just, it, we use Al- we use Alexa a lot, a lot. So, um, we’ll say, “Okay, Beth, when the timer goes off, it’s time to get up and go eat.” Mm-hmm. And we’ll set a timer for five minutes, and like clockwork now, timer goes off, we get up.

Nice. It’s beautiful.

Tonya: Nice.

Kristin: I make it sound like, you know, it’s, it’s not smooth every time. There’s meltdowns. Well, but I’m sure the first

Tonya: time- There’s still meltdowns … probably was, was not as easy as it is now.

Kristin: And it, and, and, and that’s a good point. I will, I will just be honest. This stuff takes work and time upfront, and it does.

Yeah. And that’s why it’s so tempting to start it and be like, “Oh, this is too h- too hard.” And it, and it is a lot of energy, and you’re already exhausted to start with, but if you put that time in and that effort in, it is gonna pay off in the long run, I promise.

Tonya: Yeah. So the… And, and I’m thinking, right, so you, y- you’re, we’re looking at summer break.

You also have Christmas break. That’s a long break.

Kristin: Right.

Tonya: Um, some, some areas of our country have a long fall break or spring break even- Mm-hmm … where, so these same skills could be implemented each time they’re home from school so that the child- Yes … knows that during vacation time, this is part of vacation time with that.

So I would think that would- And also…

Kristin: Oh,

Tonya: go ahead. Yeah, go ahead. I was gonna say- Sorry … I would think that, that it would get easier over time for you as a parent, too, because you already have the schedule put together. You’re just pulling out that same schedule.

Kristin: Exactly. Well, and we use it on the weekends, too.

Weekends can be challenging.

Tonya: Yeah.

Kristin: They’re long days. They’re unstructured. You’ve gone from five days of structure to, uh, this nebulous, what am I, you know, what- To

Tonya: nothing,

Kristin: right. So we actually, um, when our son became old enough to where he preferred writing and words over pictures, um, we sat down and collaborated with him and would write out a schedule for the weekend.

Tonya: Okay.

Kristin: Night and day with how pleasant- Wow … the weekend was with a schedule.

Tonya: Wow. But it does make sense ’cause there’s different activities on the, on the weekend. You know, if your family goes to church- Mm-hmm, mm-hmm … you’ve got different, different transitions that are happening during that time. Right, right.

And getting dressed, getting, you know, there are certain things going on. Saturdays, everyone has different d- different family activities that they do. So, um, so yeah, so it would, it would make sense. Mm-hmm. And but again, once you get that implemented- the majority of the time you’re probably doing the same type of activities each weekend.

So you’ll have- Exactly … some changes, but-

Kristin: Mm-hmm … not

Tonya: a lot

Kristin: of them are- It may not be the same, but you may have a picture of going to the pool, or you may have a picture of going to the park, or church Right Like you said, take a picture of your church. Um, and then if you use it on the weekends, and then those breaks, you’re already in the habit, your child already is in the habit of doing it- Yeah

then you’re on a break and you’re like, okay, you just, it’s a smoother… Um, we actually have a after school one. Um, come home, you, Beth takes a nap, and then dinner, and then bath, and then, you know. So, and she has a little bit of time on her tablet, um, so we actually use it at night as well as the weekends.

Tonya: Yeah, and see, I n- I never thought about doing it that way. It’s, I, I- Mm-hmm … think more the bigger chunks of time, but, um, but that’s a great idea. Um, just because it does, it’s, it’s gonna make it easier for the whole family with it, and, um, and we talked about siblings earlier. The, um, you know, you have, you have siblings that are still being affected- Right

by the meltdowns and things like that. Right. It, it interferes with their plans are-

Kristin: Mm-hmm … and,

Tonya: and there’s delays happening. But then they know too that, okay, so this is our next step. It’s going to happen. That’s a good point. We just have

Kristin: to get there. Mm-hmm.

Tonya: So I’m, I’m just thinking back when the kids were younger, when there was always one waiting for the other one, that, that would, would- Yes

what, whatever our delay was, it was, it was that way. And it-

Kristin: Well, and we tried to, when our son was younger, um, and her needs were so much stronger than his, um, we would try, you know, to have a schedule for just him.

Tonya: Oh,

Kristin: nice. So we would have her schedule, and then we would try to plan, um, so, like, for siblings, if she had a rest period, we would try to plan to play a game with him- Nice

during her rest period to give him that one-on-one attention. Now it gets challenging. We just have two kids, so I can imagine- … three, four, and then- I, I don’t know how they do it … where is your parent self-care time, you know? Right. But it, you know, like I said, strategically trying to help, um, the siblings as well-

Tonya: Right

Kristin: as much as, you know- I like that … as possible.

Tonya: All right. So how can parents know where to even start getting organized?

Kristin: I would say pick one thing. Yeah. Don’t try to do a whole PECS notebook and then, you know, a token board. D- don’t try to do it all. Pick one thing that you think, um, developmentally where your child is at might help them the most.

Um, typically a schedule board, uh, I would start there.

Tonya: Okay.

Kristin: Um, now, if your child is not ready to have, it’s called a f- a field of, you know, three or four or whatever on, on the actual schedule, you can start with a first-then board. And that might be- Oh, yeah … the first step actually. Okay. Um, depending on how old and, and where your child is, uh, developmentally, a first-then board, again, I wish I had a, my visual, um, and you can do the visual and say it.

And the, the goal is to have your child actively participate in pulling off the picture, um, and, and seeing, taking that ownership of, okay, first I clean up my toys, then I get to play with trains. You know?

Tonya: So they’re moving it from one board to another part of the board?

Kristin: Right. Okay. When you have, you know, when you have the actual three or four or five s- you know, schedules in a row, they take off the top one.

Okay, oh, I’m all done cleaning up toys. Put it in all done.

Tonya: Okay.

Kristin: What’s next? I get to play with my trains or, you know, my tablet or, or whatever it is.

Tonya: Right.

Kristin: Um, but starting with a first-then board of just two, first it’s the unpleasant activity or the non-preferred activity of cleaning up toys, then they get to do the preferred activity.

Tonya: Right. Okay.

Kristin: That would be the first place I would start. Um, and on that blog post you’re referring to, I have lots of links- Okay … to, to places that explain all this more, the, you know, kind of- Okay. So we, we can

Tonya: link in the show notes to that, that direct blog page- That post,

Kristin: yeah. …

Tonya: so they can go straight to that.

Kristin: Right. So. Yeah. So I, I explain it a little bit more, and then there’s some, if they wanna read more and… Yeah. Go to some free sites where you can, you know, you can print pictures- Okay … um, for free, or you can order, I have a link where you can, pay a little bit of money to order a pre-made kit. Okay. Um, again, I recommend real pictures, but.

Tonya: Well, yeah, ’cause then, then they’re connecting with this, this is Mom’s van. I know, I, I know this- Exactly … this is where I go in to get it. Mm-hmm. And maybe even from the angle that they’re approaching the car, too, so they recognize- Exactly, their

Kristin: car seat.

Tonya: Right.

Kristin: Mm-hmm.

Tonya: Right. The, um, all right. So what ages do you feel respond the best to this type of structure, using the boards, things like that?

Kristin: You know, it really depends on- It just really depends on, on what, uh, not just age, but developmentally- Developmentally … and behavior- Yeah … and behaviorally, um, one, where, what level, and two, what their needs are. So for instance, um, when our son was… When did we start this? We started this at a year and a half old.

He wasn’t speaking, um, and having a very difficult time. We were thankfully in a specialized preschool at a university that taught me all… I first learned this all as a mom- Okay … not as a professional.

Tonya: Right.

Kristin: And, you know, I’ve worked with families and children now, but as a, I, I went s- I went through the trenches as a mom learning this.

Um, he was one and a half. Intellectually, he was ready.

Tonya: Okay.

Kristin: Um, behaviorally, he really needed it, um, to function, and it, it, it was a little painful with the energy and the time doing it. Um, if you can get some training on this, if you’re able to convince insurance to cover ABA, um, applied behavioral analysis therapy in the home to help you with this, um, or a speech therapist, someone that can help you walk through this.

Tonya: Okay.

Kristin: Um, he, he was ready. It did take a while. We started with the first then board. Our daughter, however, on the other hand, we just started two years ago at 10. Okay. Because she was not developmentally ready until 10. Right.

Tonya: Okay, so it’s gonna depend from child to child.

Kristin: Exactly.

Tonya: and their understanding of it.

 I know with my kids, my daughter was actually reading books at three, so she- Hmm … she was probably a year old, or a year and a half like your son was, and would’ve been ready for this. We’ve talked about some of the examples of what you’re, what you’re doing. What are some of the things that, that have worked for your family?

I know you mentioned them in the article, but are there any other things that, that you found that, that work specifically for you?

Kristin: Token boards have worked beautifully, um, first for our son and now for our daughter. She’s doing very well with a reward. And I do have that visual- Exciting … if you want. Um, we have two different ones.

We, we’ve kind of transitioned to this one. I don’t know if you can see it.

Tonya: Okay. So there’s magnets at the bottom?

Kristin: Well, this one, this one I created. She loves baby dolls. Right. So you pick something, um, and it could be a laminated… We had a butterfly chart, but now we’re- … we’re doing the baby dolls. Our son, it was penguins.

He loved, obsessed with penguins. Um, and so his was a penguin chart. So, um, and again, you can start with as few as poss- I would start with what your child is gonna be successful at. So when they’re first doing this, maybe they just have to get one to get a prize. Um, and then we have wor- Bethany, we started with one then two.

We were on two forever. She’s up to six now.

Um, that, uh, so she, we’ve just, you know, you have to- eventually start to, to wean. Um, but if she, for instance, we use, we use it for if she does really well with pottying.

Um, if she listens and follows directions, and cleans up her toys like we ask, she gets a baby.

 And so she gets to put it up there. And she moves it. She gets to… They’re all down here on the bottom. So we say, “Good job,” praise, positive reinforcement. She, she thrives on praise. “You get a baby.” And so when she gets all five, she gets to go to her treasure box, which is a picture of the actual treasure-

her treasure box.

And pick a prize.

So this is a token board, but like I said, start out with just one or, they just have to get one or two. You want them to be successful. And it not be too hard.

Tonya: So the success that, that they would be getting this reward from would be, um, completing a task, making a transition, depending on what the child is struggling more with?

Is that what you would start with?

Kristin: I, I would recommend picking one behavior. Okay. One desired behavior. Um, we have, it’s kind of grown into Bethany understands now. If she does what she’s supposed to do, and she listens well, and she does it like that, when the timer goes off, she gets a baby. Um, but that has, that’s been years for her- Right

to progress to this level. Um, and depending on the child, they may progress very quickly. I recommend starting with one desired appropriate behavior, and that may be transitions.

Tonya: Okay.

Kristin: And we have this right next to her schedule, her schedule board. Okay. So if the timer goes off, she transitions, does the non-preferred activity like clean up toys, “You did a great job.

The timer went off, you cleaned up your toys, you get a baby.” Okay. And you have to be consistent. It has to be consistent. Um, and you can eventually generalize it to, “Hey, you did a great job with that task. You get a…” But start with one behavior.

Tonya: Okay.

Kristin: They did their schedule. They transitioned. They get a baby, or trade, or whatever.

Tonya: Right. What, what, whatever it is they’re… I, I like the idea of making that personal for them so that it’s something that they’re interested in- Mm-hmm. Right, right … and they want to, to see move.

Kristin: Princesses, you know?

Tonya: So then- … with the prize box, so is she earning a prize every day with this now?

Kristin: We, like I said, we’ve had to make it challenge, more challenging.

It was breaking the bank.

Tonya: Yeah.

Kristin: Um, so now

Tonya: she- That’s, that’s, that was

Kristin: what I’m thinking. I posted a picture of her on social media, that’s when we were still doing the butterflies recently. She earned a Baby Shark s- sheet set. Okay. And she, it was difficult to earn those six butterflies. Um, and she worked really hard, hard, and boy, she was proud.

And so, um, yeah, we’ve worked up to where she’s not getting a little prize every time. Um, it’s more that you have to- earn the big prize now. And so, and it might not be a treasure box. Take a picture, you know, like, so g- so this is a little more complicated than you should do. But if she gets to go to the treasure box, she can choose a butterfly or something in the treasure box.

That’s, that’s a whole nother- Okay … level I don’t rec- That’s why the butterflies are there.

Tonya: Okay.

Kristin: Um, but if you’re gonna do little prizes in the treasure box, start out really, really little. Like, like a package of something from the Dollar Tree where there’s, like, 10 in the package. Right. You know, we unfortunately started out with Dollar Tree stuff, and so every time she got, I think it was three, two or three maybe, she got a Dollar Tree prize.

Start out really little. You can always go bigger.

Tonya: Right. Right. Well, I’m thinking, too, depending on the child, you could do time on the iPad or something-

Kristin: Yes …

Tonya: as a prize, too. That’s

Kristin: actually what we did with our son.

Tonya: Okay.

Kristin: He earned, he earned time for the computer.

Tonya: Mm-hmm. ‘Cause I’m thinking b- both of my kids, um, computer time is what, is what they would- Yes

they would work for when we would do things.

Kristin: Whatever motivates your child most.

Tonya: personalize

Kristin: it

Tonya: Yeah. I mean, it c- it could be picking out a game to play after dinner or something, you know? Mm-hmm. So, so parents, listen- Quality time with, with parents … depending on your, yeah, depending- Yep … on your, your, your child and what, what they really enjoy doing.

Um- Mm-hmm … so it wouldn’t necessarily have to break the bank to do this, to- Exactly … go on. Yeah.

Kristin: That’s a really good point. Mm-hmm.

Tonya: But I’m thinking, too, depending on, like you’re saying, developmentally, it depends on the child, too, of where they are. Right. Because it s- sounds like Beth is getting to the point where she can retain the idea that she’s earned several of these- Right

now and is ready for a bigger prize- Right … with it, where she’s working for that. Like-

Kristin: Right …

Tonya: uh, uh, ’cause, ’cause you’re not gonna buy a sheet set every time she, she, she, she has a good

Kristin: day. Right.

Tonya: It

Kristin: still needs to be the immediate, she gets the baby. You know? Right. Behavior, baby right then. It, you know, it needs to be as, as…

And we actually take stuff when we travel, too. Okay. Um, we take boards. I was gonna ask you about that in just a minute. And we take, mm-hmm, take it when you travel. Um, and maybe, maybe they do something in public where we actually kept the penguins in our pocket when our son was little. Um, in public, you know, he would transition well.

Here’s a penguin. Yeah. Here’s a penguin. It’s okay. Um, so you may wanna take them with you and, and then, you know. And we, we kind of hold it over her a little bit, too, ’cause she understands.

Tonya: Right.

Kristin: We’re like, “Remember what you’re working for.”

Tonya: Yeah. What, now I, through the years I’ve done, um, different substitute teaching positions, and I’ve been in classrooms where they’re using this very well, and I never thought about doing this at home.

So I, I- Mm-hmm … and I’m thinking, a lot of the kids that we’re talking about, they’re doing this in school already. Exactly. So they’re used to having that reward structure set up where they’re working for a task. So maybe, um, for parents who have a school-age child, talking to the teacher to find out, what are you doing- Yes

in the classroom? How is it- Yes … how is it working? Yes,

Kristin: so it’s consistent-

Tonya: With- … from home

Kristin: to-

Tonya: Right … yes. That’s a good point. To, to find out how to start. You’d at least get an idea. Mm-hmm. Or maybe, maybe you could go and observe sometime and kind of see how, how it’s working. Um, I think most teachers- Mm-hmm

are, uh, well, with COVID, I don’t know what the rules are right now, but typically teachers are happy with, if a parent wants to be involved and to, to, to partner with them to support what they’re doing in school. ‘Cause then when they go back to school, they’ve had consistency while they were gone, so everything- Exactly

every-

Kristin: It’ll help at school.

Tonya: You know, uh, we’re- Mm-hmm … we’re, we’re winning on both ends with that. So.

Kristin: Exactly. Um, and, uh, one thing, important thing I forgot to mention, you don’t take them away.

Tonya: Okay.

Kristin: So this is a positive-

Tonya: So it’s never a negative,

Kristin: always a positive … reinforcement. Never take them away.

Tonya: Yeah, I

Kristin: like that.

Um, they’ve earned it. Um, and so, you know, positive reinforcement is, is, and praise, is so much more effective. And then I will say, back to siblings, if your child with additional needs has a board- We, we, it’s hard, but we’ve, you know, tried to do something similar, you know- Yeah … for our, our son. He has his own challenges, but, you know, uh, it, it’s hard, you know, ’cause if she’s getting these prizes, he, he should have some kind of- Exactly.

No, I, I agree … reward system too.

Tonya: I agree. And so, and some of those challenges are the patience that that sibling’s going to have to work through- Exactly … waiting to go to the things that they were waiting to do. And, and- Mm-hmm … there’s gotta be something that they, bigger that they wanna work toward, so maybe they could have a long-term project that they’re working toward, um, because they’re able to, to comprehend that and to work through that.

No, I, I, I think it’s very valid to say that. Um, the last question I had, um, was we talked about travel a little bit and taking it with you, maybe having it in your pocket. Have you had a situation where you’ve had guests in the home during these breaks, and how did you modify things during that time?

Kristin: That, that actually throws a whole nother level into it.

It’s even more important actually when you have guests that disrupt, one, a child’s space, and two-

Tonya: Mm-hmm …

Kristin: um, their routine. I could s- I- if you need to have additional pictures, maybe like a picture of who’s gonna be in the home-

Tonya: Oh,

Kristin: yeah … and preparing them actually ahead of time would be really important to say, “Hey, Grandy’s coming,” you know, “Grammy and Grandy are coming tomorrow, and we’re gonna spend time with them,” and, um, and so you could put on there, um…

For instance, my parents are coming this weekend.

Tonya: Okay.

Kristin: We could put a picture of our little above ground swimming pool and Grammy and Grandy next to it on the schedule, um, or put, um… And, and it may not be family, it could be friends coming over. Right. So, y- you know, it’d be important to whatever way you can put that on the schedule and prepare them.

Okay. “Hey, you’re s- you know, you’re still gonna get to do your preferred things today,” and maybe it is during the time that grandparents are there. They may need that time. Right. Um, but yeah, just preparing actually ahead of time would be very important.

Tonya: I’m, I’m thinking too that, um, f- on the parents’ side of it, the challenge may be in helping the guest that’s there understand what you’re doing.

Kristin: Mm-hmm.

Tonya: Because if they haven’t been in this environment before, they’re not- Right … going to necessarily understand why it’s important that you continue with the schedule.

Kristin: You know, trying to be consistent, um, even when they’re there and, and your guests may not understand.

Tonya: Sometimes it’s okay to question things.

In this case, sometimes it’s okay just to say, “This, this is how we do it.”

Kristin: This could be a very good opportunity- if, you know, they’re open to, to you showing them, it could be a very good opportunity to show what it’s like if you use the schedule board, what a difference it makes- Right … with a child. Um, and they might see, okay, wow, that was almost magical that Joni went over and cleaned up his toys, and then went to the schedule board, and then went straight without a meltdown.

So they might see how effective it is- True … and maybe Joni really does need that support. Right. Maybe it isn’t just par- bad parenting. Now, I would not blame a parent who has difficult relationships with a family member or parents- Right … if they didn’t do it.

Tonya: Because of the different types of relationships- Right

that we have, it’s not always gonna be easy to stand that ground. Um, but I did wanna ask about that- Right … if you, if you had had any tips for parents on that, because I, I know, uh, the odds are we have someone listening who is going to have that situation. And- Right … and I don’t know how I would handle it.

It’s, um-

Kristin: You know, the battle may not be worth it, but then again, you know, you know your limits as a parent. Right. But it is an amazing opportunity for people who don’t understand or don’t support you to witness, wow, that really helps.

Tonya: Yeah. And, and, and it’s a new concept. The same as it is- Right … for us as parents when we first start out and are learning these skills, our parents, our siblings, our friends that come may never have had this opportunity yet.

And you’re right, I, I like- Mm-hmm … that idea, and it would make them more supportive for you as you’re moving forward now too. So now you have an ally who understands what you’re doing, and when you’re talking to them, they, they, they understand why you might need to hang up on the phone because it’s time for a transition now.

Right. Right. And, um, and not be offended, but to know that, yes, this is, this is a, it, it, I, I, I was gonna say a coping strategy, but it really isn’t a coping strategy. This is, this is a life skill that needs to happen.

It really is a life skill, isn’t it? As Kristin reminded us, setting up these visual systems takes a lot of front-loaded energy, especially when you’re already running on empty. But that investment pays dividends in peace, predictability, and fewer daily meltdowns for the entire family. If you want to grab the visual timer apps, the schedule kits, or read Kristin’s original deep dive blog post, I have updated all of those links for you in today’s show notes.

As we navigate this collaborative advocacy journey together this summer, remember to give yourself some grace and carve out those special pockets of self-care. If this episode helped you breathe a little easier today, please hit subscribe and share it with another parent who might be struggling through the summer stretch.

And if you want to learn more about what Kristin and her husband Todd are doing to help strengthen the marriage relationship for parents who have children with disabilities, be sure to listen to the interview I had with them about their work and their book, How to Build a Thriving Marriage as You Care for Children with Disabilities.

Thanks for listening today. I’ll see you next week

The post Episode #155: The Summer Break Survival Guide for Kids with Disabilities appeared first on Water Prairie.

Discover the power of natural inclusion. Tonya Wollum shares a heartwarming reflection on community, belonging, and seeing children with disabilities seamlessly included in a small town community event.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Is it possible for inclusion to be so seamless that you barely notice it’s happening? This week, I sat in the bleachers of a rural New York baseball game expecting a fun afternoon, but I walked away with a profound masterclass in what it means to truly belong. From children with noise-canceling headphones to those using mobility aids, everyone was simply part of the community—no labels, no separation. In this solo episode, we explore what “natural inclusion” looks like in 2026 and how we can foster more of these “bleacher moments” in our own lives.

Key Takeaways: “Inclusion at the Ballfield”

LINKS
Subscribe to the newsletter: https://waterprairie.substack.com/
Connect on Instagram: @water.prairie

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.substack.com/

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 June 7, 2026)

Full Transcript of Episode 154:

Tonya: Is it possible for inclusion to be so seamless that you barely notice it’s happening? I sat in the bleachers of a baseball game this week expecting a fun afternoon for my son, but what I found was a masterclass in belonging. No barriers, no labels, just a community sharing space together. Today, we’re looking at what natural inclusion really looks like in 2026.

Hi, everyone. Welcome to the Water Prairie Chronicles. I’m your host, Tonya Wollum, and I’m glad you’re here. Today I wanted to tell you about something that has been on my heart all weekend. I’m currently in Western New York supporting my son’s summer baseball team, and this past week I had the privilege of attending Kids Day at a local game. What I witnessed there wasn’t a formal workshop on inclusion. It was just life unfolding exactly as it should.

The scene was classic Americana, farmland, a small town crowd, and school groups everywhere. I found myself sitting near a woman who was the absolute life of the stands. She was cheering, chatting, and greeting every child who walked by with genuine warmth. She spoke openly about her involvement with Special Olympics, and it was beautiful to see how the community around her simply embraced her and shared the space without a hint of judgment.

But what really struck me as an IEP coach and a parent was the ease of it all. From my seat, I watched children, some with noise-canceling headphones, some with fidgets, others with mobility aids or one-on-one support, just being kids. They were rolling down grassy hills, chasing foul balls, and clamoring for autographs right alongside everyone else.

There was no special section. There were no barriers. Inclusion wasn’t a policy. It was the atmosphere. As I watched, I realized that we spend so much time advocating for accommodations, and yes, those are vital, but the goal is, and always should be, for those things to be so seamless that the child just feels like part of the community.

Today, I want to challenge you to look for those moments in your own community. Where are you seeing inclusion happen naturally? How can we foster more of these bleacher moments where everyone truly belongs?

If you’ve seen inclusion in action this week, I’d love to hear about it. Drop me a note or send me a DM @water.prairie on Instagram. Remember, let’s focus on the individual, not the diagnosis. Have a great week, and I’ll see you next time.

What is the “Typical Kid First” approach? It is a philosophy that prioritizes the child as an individual, focusing on their unique personality and role in the community rather than their diagnosis.

What does “natural inclusion” mean? It refers to environments where individuals with disabilities are included in activities seamlessly without the need for segregated “special” areas or forced attention.

How can I find more inclusive environments for my child? Look for community-led events like local sports, farmers’ markets, or parks where the culture is focused on shared experience rather than specific programs.

Why is seamless accommodation better than formal ones? While formal accommodations are vital, seamless integration helps children feel like part of the group rather than an “add-on,” which fosters a greater sense of belonging.

How can I encourage my community to be more inclusive? Start by participating, being visible, and modeling openness. When you greet others without judgment, you help set a tone of acceptance for those around you.

The post Episode #154: A Masterclass in Belonging: What a Baseball Game Taught Me About Inclusion appeared first on Water Prairie.

Meltdowns aren't a discipline problem—they're a nervous system response. If family members don't understand your child's autism diagnosis, don't cut them off yet. Learn how to bridge the gap gracefully in our latest episode.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Has a grandparent ever looked at your autistic child and just… not gotten it? Today, we’re talking about why that happens AND what the research says we can do about it.

Yale-trained scientist and autism educator Dr. Theresa Lyons of Navigating Autism joins Tonya to unpack the complex relationship between grandparents and autistic grandchildren — including what a 2023 caregiver training study revealed, why grandparents grieve too, and how a grandparent who truly “gets it” can become the most powerful person in your child’s life.

In this episode, we cover:

“When you have someone who believes in you, life just becomes unstoppable.” — Dr. Theresa Lyons

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/

Meet Dr. Theresa Lyons — autism educator, Ivy League scientist, and autism parent. She’s the founder and CEO of Navigating AWEtism, a platform that turns overwhelming autism science into clear, practical steps for families. With a Ph.D. from Yale and experience working with parents in 21+ countries, she blends rigorous research with real-world insight to help families gain clarity, confidence, and a roadmap for progress.

(Recorded April 15, 2026)

Full Transcript of Episode 153:

Dr. Lyons: When you have someone who believes in you life just becomes unstoppable. And I think that’s what every grandparent wants their grandchild to have, that strong connection that, I believe in this child and I wanna see them grow and blossom.”

Tonya: Has a family member ever looked at your autistic child and just not gotten it? Maybe they thought the meltdowns were a discipline problem. Maybe they stopped coming around after the diagnosis. Maybe they said something that broke your heart, and you’ve been carrying that ever since. The grandparent relationship is one of the most complicated, most emotional, and most under-talked about dynamics in autism families, and today we’re gonna talk through some of the pain you might have experienced.

I’m Tonya Wollum, and this is “The Water Prairie Chronicles,” a podcast where we walk alongside parents of children with disabilities, bringing you honest conversations and practical guidance to help your family move forward with confidence.

My guest today is Dr. Theresa Lyons, a Yale-trained scientist, an autism educator, and someone who brings a perspective I’ve never had on this podcast before.

Dr. Lyons is the founder of Navigating Autism. She has worked with families in more than 21 countries, and she is also a mother to an autistic child. She knows this topic from the inside out, and today she’s sharing it with us.

We’re talking about how to help grandparents understand your autistic child, how to bridge the gap without losing the relationship, and what it means for a child when a grandparent truly shows up for them.

Dr. Lyons, welcome to Water Prairie.

Dr. Lyons: Thank you for having me. I’m excited to be here.

Tonya: In the parenting communities right now, parents share two very different experiences: grandparents who disappear or pull back after a diagnosis, and grandparents who show up through every meltdown and every milestone. From what you’re seeing with working with families across, we said more than, more than 21 countries, what’s the defining factor that you think separates a grandparent who struggles to connect from one who becomes a true ally for their family?

Dr. Lyons: A lot has to do with the already established communication between the grandparent and the adult child. So if it is strained, autism is just gonna put more strain on that. Um, so it’s really important to Be able to have conversations and to, to communicate from generation to generation. That’s really how you can have grandparents provide meaningful support to the family.

Tonya: Now, I, so I, I was an older parent when I had my children, which means my parents were older by the time my kids came. And, um, and I can remember my daughter’s diagnosis. Now, my daughter’s visually impaired and, um, and she has low vision, so she’s not blind in the traditional sense that a lot of people may imagine a, a blind child would be acting.

And we would go to my mom and dad’s house, and she would run through their house and not bump into anything. And I can remember my mom saying, “She can see just fine.” She, you know, like she, she didn’t get it that seeing has different levels. And for Emily, what she could see was a distorted version of what we saw, but because she’s near sighted, it would, like the objects would be larger than they really were, so she could easily navigate around the blurred edge of what she saw.

Um, and so we found a lot of it was, was a lack of education, not, not understanding what that diagnosis meant for my daughter. Do you think that plays a role in this as well with grandparents who don’t understand or because they came through a generation that would hide a diagnosis rather than making, than disclosing that to, to their, their neighbors or to their friends?

Dr. Lyons: So research in 2023 looked at grandparents, um, who were playing the grandparenting role, not stepping in as, as a parent. Uh, and they found that, um caregiver intervention and training was really beneficial for these grandparents. And I will say in general for parenting, research also shows that learning about autism and really getting your hands into different, um, interventions and, and really understanding the behavioral aspect makes a huge difference for parents and kids with autism.

So the same is true for grandparents. You can’t expect a grandparent to know what to do if the research shows we can’t even expect parents-

Tonya: Right …

Dr. Lyons: to automatically know how to do this, right?

Tonya: Right.

Dr. Lyons: So we, we definitely need to give grandparents some, some grace as, as to, you know, the majority of them are not gonna know what to do.

They’re not gonna know, um, how to handle meltdowns. Meltdowns can be very traumatic for, for everyone. So for the child that is having it and for, for anyone around that is even watching it. Grandparents sometimes say that the, the trauma is seeing their grandchild behave like that, seeing their adult child not really be able to, to help, and it’s traumatic as a grandparent to just have to stand there and watch and feel helpless and then not even know where to turn to.

So, so there’s definitely a lot of trauma that can be experienced, so the more education and the more really hands-on intervention training that a, a grandparent can get really helps with understanding the situation and then supporting your adult child, um, much easier.

Tonya: Yeah. And I, and I can see that because I, I, I know from the parenting side of things, when our children are young We, we go into it thinking, you know, of course everyone thinks, “I’m gonna have the perfect child.”

So- Yes. It’s the, “Why would I not?”

Dr. Lyons: I’m a parent.

Tonya: There’s not gonna be any problems.

Dr. Lyons: That’s right … until they’re like teenagers.

Tonya: I’m the perfect parent.

Dr. Lyons: I know it all. It’s- I can figure it out.

Tonya: Right. Yeah.

Dr. Lyons: Like parenting, come on. I, I watched my parents do it. It was easy. Yeah. Except when I didn’t like what they did, and I’m just not gonna do that.

Tonya: I’m not gonna do that.

Dr. Lyons: Exactly. So I know

Tonya: what to do. And, and I don’t, I don’t know about you, but when my kids would have those, those meltdowns, it must be a discipline issue, you know? So, so I have to lay the line out that this is what w- you know, we, we don’t do this. Um, we went through parenting programs to, to learn how to, to, to parent the strong-willed child.

Um, we went through that. Um, and, and we kinda came on it the, the best way to, to help our children through stumbling a lot along the way. And so, so helping a grandparent understand that journey is that next level, like you’re saying, ’cause if, if, if we’re struggling, then-

Dr. Lyons: I don’t think anyone naturally knows how to handle an autism meltdown, parent, grandparent.

I, I just don’t think that’s in our, like, DNA to, to really be able to understand that, um, a- a- and understand when the nervous system just gets overwhelmed and overstimulated. Uh, and even tuning into someone’s nervous system like that, right? As, as a parent, we start to, to tune into, okay, when are their triggers?

Oh, we’re starting to notice their nervous system. These are all things that most parents don’t ever develop that skill of, okay, I’m really tuned into, um, how overwhelmed my child is. So there’s a lot about autism and meltdowns and, and just so much that When you get educated on it, it makes sense and you can see things and you’re like, “Oh, okay.”

But without that education piece, I think it’s really, really difficult.

Tonya: How do you recommend that parents and grandparents start that education process?

Dr. Lyons: So a lot of times it depends on what’s going on locally. Um, uh, there are some grandparents that prefer to learn in person, some parents as well, so it’s really knowing that about yourself.

Do I need something in person? Do I need something virtually? Um, you have a lot more options when, when you’re open to, to learning from things virtually, but there are, there are great coaches out there. Um, different large hospital systems run a lot of these education programs, and that’s where you can start.

Um, it– You’re likely not going to get all the information you need in one sitting and from one place because that has a certain perspective. Um, so you, you’ve just gotta start somewhere. Uh, so start where you feel comfortable learning and, um, then just know that you’re, you’re gonna wanna keep learning for sure.

Tonya: Our grandparents may have a lot of confusion because they didn’t grow up with these terms that we’re talking about a lot easier now, like neurodiverse, um, neurotypical. Those are words that our, our grandparent group would not have heard until recent years ’cause no one was using those words until more recent years.

Dr. Lyons: That’s very recent. Neurodivergent and neurotypical is within probably four years or so, ’cause even when my daughter was diagnosed with autism, um, neurodiverse and neurotypical was not anything that was, that was discussed back then. Um, and it’s only been 13 years. Right. So it’s not- Right … that long really.

Tonya: And that’s part of, um- Of more than just autism too. And so you have this whole

Dr. Lyons: Yeah, neurodiverse is more than autism.

Tonya: Yeah. So, so it, it can get in, in, in intermixed, um, with this too.

Dr. Lyons: Definitely.

Tonya: With all of this new stuff coming in, with watching their children struggling, ’cause, you know, once a parent, we’re always a parent.

So, so if, if, if our children are struggling, we’re struggling too. There’s some grief that comes with that. There may be some denial that’s coming with not accepting the diagnosis that’s there. How can we help these grandparents process the grief and the confusion that they might be feeling?

Dr. Lyons: Everyone processes things a little differently, but support and community and, um, having other grandparents who also have kids with autism definitely is helpful, um, so that you can talk through these things.

Um, in 2017, there was a large study done of almost 2,000 grandparents, uh, and it identified themes of, of grandparents wanting to have that connection with an autistic child, and just struggling, “How do I connect with my chi- my grandchild with autism?” So it’s important for grandparents to know that they’re not the only one who struggles with that, right?

So understanding different, um, statistics like this is, is really important because it, it can feel very hard. It can be like, “This is not the grandparenting experience I want,” right? Maybe you walk in the house and the child, you know, runs away, or the child goes and sits in the corner, and every time you try and go towards them, “Here, let’s read a book.

Let’s do this. Let’s do this,” and, and the child then starts getting even more and more upset. Um, so it, it– there’s certain– like nobody ever thinks that that’s gonna be their grandparenting experience. So then it, it becomes this shock of, of what am I doing wrong? What is going on? So again, it’s that education piece is really, really important so that grandparents don’t take it so personally, and then they can s- learn how do I have conversations with my adult child about how to interact with my grandchild?

Because that might be something that they really, really want. Um, and it’s important to have these conversations, but these are not easy conversations to have, and I don’t think anyone is very good at them without a little planning and maybe practicing, a little, you know, role-playing in their head, you know, that kind of thing.

Um, so I think it’s really important for grandparents to, to understand that it, it’s natural and it’s okay to feel some grief of, “This isn’t what I was expecting and, and I still wanna connect with my grandchild.” And, you know, there’s maybe a lot of things that that grandparent wants to teach that child, right?

And all of that needs to be taken into account. Um, so the, the need for information for grandparents is definitely high so that they get the education and understanding about what autism is, and so then they could create more beneficial interactions.

Tonya: So let’s move to the parents listening, ’cause more than likely that’s who’s hearing us and they’ll be passing this on to, to the grandparents.

So for those parents that are listening right now who are actively navigating a painful divide, maybe the grandparents have minimized the diagnosis, they’ve refused to follow sensory accommodations at their home, or they simply don’t believe this is a real diagnosis. What are the first steps that this parent can take to start building that bridge without hurting the relationship?

‘Cause walking away from your parents is not the answer, but there’s ways that we can help bring them in gently. Do you have any recommendations for those parents?

Dr. Lyons: Well, so I’m gonna back it up just a little bit, ’cause one thing I’ve noticed is sometimes where the tension comes from is before the diagnosis So there are times when grandparents point things out about grandkids and the adult children might not want to hear it.

Uh, and, and this is something grandparents struggle with in the sense of, do I mention that I have some concerns about speech or behavior or things like that? So sometimes this situation is actually the, the, the root, right? You, you have all these emotions that, that stem from maybe a, a grandparent saying something.

Um, and there is research showing that grandparents, both the grandmother and the grandfather, do notice things earlier. And when they discuss those concerns, an autism diagnosis is made earlier But again, these are difficult conversations to have, right? So a, a grandmother that is frequently involved with their grandchild, the autism diagnosis is made five months sooner, and for a grandfather, it’s four months sooner.

So these– grandparents have, have big impact, um, but those kind of conversations you can imagine are not easy, and you could imagine how many do not go well.

Tonya: Yeah. Uh, well, I was gonna ask, how, how can a grandparent start that conversation and be heard? Because you don’t wanna come across as judgmental or…

And, and I can see the parent now feeling like, they’re being told they’re doing something wrong.

Dr. Lyons: Exact right, and then that triggers that parent- Right. … you know, for the whole parent-child relationship.

Tonya: So now the relationship’s gone, you know?

Dr. Lyons: Yes. Yes, yes, yes. So a lot of times, um, I mean, there’s, there’s so many different ways to, to handle this.

Um- I have found, and I have helped families kind of dig themself out of that, that hole of anger and everything, um, to sometimes have these kinds of conversations in email and where people can really think about their thoughts. We now have all k- types of AI, and we can plug it into AI and be like, “Make sure I’m not offending anyone.”

“Does this sound rude?” You know, like we, we can make sure we at least start the conversation in, in the way that we want. Um, so actually I was working with, um, a, a mom who, um, the in-laws had mentioned a few things and the mom just really got upset because this was the, her first time being a mom and she really wanted to do a good job.

And it felt, it wasn’t, but it felt to her like she was failing and then her in-laws were thinking she’s a bad mom. And so it, it cascaded down in, in a very negative way and the mother-in-law actually stopped the conversation and was like, “This is not, this is not what we want to happen,” right? So, so, uh, both sides can see like, oh, these words are just getting in the way of, of everything.

So for that family, what– ’cause then the next time they were visiting, the grandfather couldn’t help himself and he said an observation again, and then the mom got really upset and doesn’t wanna visit, and then, you know, the father’s in this awkward position. So, um, what, what was done was, um, the grandfather wrote an email, um, and it was in response to the mom.

So the mom was the one who was getting really upset. Um, but she honestly had certain concerns of her own, and that’s why her emotion was getting– you know, she had that concern herself. So it was just her being like, “Okay, I, I wanna know what you see.” And email was the only way she could, she could handle it, and she couldn’t read the email reply for a while, and the mother-in-law made sure the, the grandfather-in-law was, you know, his words were good, right?

So like everybody knew this is an emotionally charged situation. But the thing is, everybody had love for the grandchild, and that’s the important thing to remember. So words are gonna come out the wrong way. They’re, they’re gonna s- you’re gonna say things probably that you don’t think are harmful or insulting, but y- on the other side it is.

So it’s just important for everyone to say, “All right, we do not mean this in any negative way whatsoever.” So sometimes you have to get out in front. So a grandfather could or grandmother could say, “Listen, parenting is very different nowadays, and you are dealing with things that we did not have to deal with at all.

And I understand how hard it is to be working and to have kids and, you know, relationships and, and, and all of this. So we only ever want to make your life easier.” And I like– And you could just say, “I just want you to remember that piece throughout all of this. Just remember that.” Right? And it seems kind of silly.

Why do I have to say that? You know, like, that’s my child. They’ve, I’ve known them all their lives. They know I love them. But you’re dealing with such an emotional situation that sometimes it, it’s better to just, you know, put that out there so that you can always circle back to that. Um, because most grandparents love their grandchildren, most parents love their children, most parents want their grandchild- their grandparents involved and everything.

So it’s, it’s really just how do we make sure that the communication piece in all of this doesn’t trigger anyone, and, and how do we build that multi-generational support and interaction? It really takes conscious effort. It doesn’t– For most people, it doesn’t just kind of flow. Um, for most people, it can become very burdensome and stressful, and nobody wants that.

So, um, it, it really just takes a lot of thought, I would say.

Tonya: Well, and listeners, to bring back the story of my daughter and my mom questioning, you know, what, why, why we were making su- such a big deal about her not being able to see. My mom came around and started learning more and, um, and would take books that she would buy for her and take a black pen outline and outline the pictures.

Once she understood what was needed, then she was part of the solution and a support for me and, and for, and to this day is her strongest advocate for anything. So, so it, it is worth the investment of time to help- Yeah … both generations understand. And grandparents, if you lead with love, that’s, that’s what this- Yeah

is all about. You know, you, you, you do love- It is … your child, but our words can be so harsh at times that we don’t, we don’t mean them to be, but they can.

Dr. Lyons: And we don’t. Yep …

Tonya: and, and when- Nope … when your daughter or your son are on that raw emotion of dealing with this toddler or this, this preschooler who is just having meltdowns and they don’t know why yet, and they, you know, they’re, they’re, they’re living in trauma all, all the time.

Um, it’s hard to receive anything that’s not positive at that point. And, and that suggestion Yeah.

Dr. Lyons: Doesn’t… ‘Cause it, like you’re saying, the, the parent, you’ve gotta put yourself in the perspective of the adult child, the parent, and they might not be sleeping, right? Their, their child might not be sleeping.

There might be battles with eating and with getting dressed and with school. School might call every day, twice a day, three times a day. You might not be able to really, uh, focus on work, and then maybe you’re feeling stressed, like, “Oh, you know, I don’t, I don’t wanna get fired.” You know, so the, the adult child is in such a different state that…

A- and the adult child might be presenting like, “Yeah, I got this. Everything is good,” right? But underneath they’re like, “Oh my gosh.” Right? So, so this, this is where, uh, like leading with compassion, even if it seems like it’s unnecessary, but also not being like condescending, but, but that genuine compassion- Yeah

um, is, is really the place to start.

Tonya: I wanna pose this question ’cause I think, I think it’s one that if we can finish with this thought, it’s gonna help everyone listening. What do you believe an autistic child truly gains when they have a grandparent who deeply gets them, and what’s at risk when they don’t?

Dr. Lyons: Oh. When you have someone who believes in you life just becomes unstoppable. And I think that’s what every grandparent wants their grandchild to have, like that, that strong connection that, “I, I believe in this child and I wanna see them grow and blossom,” and always to have a, a safe space. I mean, if you could imagine asking a child, “When do you feel safe?”

Mm. “When I see Grandpa. When Grandma bakes me cookies.” Right? That’s, that’s what life is, is all about, so having that unconditional support, that safe space just means everything to a, a grandchild.

Tonya: Well, and, and I, I like the term safe space ’cause that defines it so well. Um, it’s not safe from being shot at.

It’s an emotionally safe space, and it’s so important that our kids find that, that place. But yeah, what, what grandparent doesn’t wanna be the one who, who is that for them? You

Dr. Lyons: know? Exactly. I mean, that, that is what, what grandparenting is. You’re there for, for, uh, just so that that grandchild feels love, like, and feels it, not just knows, right?

With the parent and child, many times we always feel like we know our parent loves us. Like, we know it. We might not say, “I feel love,” or like, “My mom or my dad is my safe space,” but a grandparent could have that. And just education, understanding what autism is, and taking the time to have those conversations with the adult child, it, it really can make a, a huge difference in everyone’s lives.

Tonya: As a scientist, as a mother, as someone who’s walked this path herself, I appreciate you being here today. This conversation is gonna mean something to a lot of our families, and I’m sure that our listeners are gonna wanna connect with you. Where can they find you?

Dr. Lyons: Sure. You can find me at navigatingautism.com, and I do spell autism differently.

I spell it A-W-E-T-I-S-M. And you can also find me on YouTube. I’ve had a channel for over 10 years. Um, so you– pretty much any research you do on YouTube about autism, you’re gonna run into a video of mine or two. So certainly check me out there and leave comments. I, I write back to the comments, so that’s, that’s definitely a place to, to get started.

Tonya: So we’ll, we’ll put those links in the show notes, um, and, and your other social media as well, ’cause you’re on Instagram and Facebook and all too, right?

Okay. So here are three things that I want you to carry from today. First, grandparents are on their own journey too. They didn’t grow up in a world that understood neurodiversity, and their confusion or resistance isn’t always rejection.

It’s often fear or grief or simply not knowing what to do. That doesn’t make hurtful words okay, but understanding the why gives you somewhere to start. Second, you’re not responsible for educating everyone in your family by yourself. Dr. Lyons gave us a real practical language for beginning the bridge-building conversation.

Use it, start small, one conversation at a time. And third, the stakes for your autistic child are real. A grandparent who truly gets them is not a nice-to-have. It’s a relationship that can shape who they are and who they believe they are. That’s worth the hard conversation. If you want to go deeper with Dr.Lyons’ work, make sure that you check out the show notes for her links.

We’ll put that in the description for you. And if today’s conversation has you thinking about your child’s school supports, I’m here for you. Reach out anytime. Share this episode with a grandparent who needs to hear it or a parent who needs to hear it, and subscribe so you don’t miss what’s coming next.

And take good care of yourself and your family, and I’ll see you next time.

Q1. Why do grandparents sometimes pull back or seem distant after an autism diagnosis?
A1. It is rarely direct rejection; more often, it stems from deep-seated fear, grief, generational differences, or feeling completely helpless during traumatic meltdowns.

Q2. How does grandparent education impact an autistic child’s development?
A2. Research shows that when grandparents receive targeted caregiver training and intervention education, it lowers their stress and allows them to create highly beneficial, meaningful interactions with the child.

Q3. What should I do if a family member insists my child’s meltdown is just a discipline problem?
A3. Lead with education regarding the nervous system. Help them understand that a meltdown is a state of being biologically overwhelmed, not a behavioral choice or strong-willed defiance.

Q4. How can we discuss sensitive developmental concerns without triggering family arguments?
A4. Moving highly emotional conversations to structured formats like email can give everyone time to think, process, and edit their words for compassion rather than reacting defensively in the moment.

Q5. Does having involved grandparents actually speed up the autism diagnosis process?
A5. Yes. Research highlights that grandmothers who are frequently involved help notice developmental variances earlier, leading to a diagnosis an average of 5 months sooner, while grandfathers accelerate it by 4 months.

Q6. What is the ultimate benefit for a neurodivergent child who has an affirming grandparent?
A6. They gain an emotionally safe space and unconditional validation. As Dr. Lyons notes, when a child has someone who truly believes in them, their potential becomes unstoppable.

The post 153. The Grandparent Gap: Autism, Family, and What the Research Actually Says appeared first on Water Prairie.

Ensure your child’s IEP is ready for the move to middle or high school. IEP Coach Tonya Wollum shares a 5-step checklist to secure services and smooth transitions before the school year ends.

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If your child is heading to a new school building this fall, the decisions made now will determine whether they start the year with confidence or spend August scrambling for support. In this episode, IEP Coach Tonya Wollum breaks down why April and May are the most critical months for transition planning and provides a clear 5-step roadmap to protect your child’s services.

Don’t let the “May-cember” chaos distract you from the paperwork that matters most. Download our free printable checklist to guide you through the next few weeks and ensure a smooth hand-off to your child’s new school team.

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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:

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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 April 16, 2026)

Full Transcript of Episode 152:

If your child is on an IEP and they’re heading to middle school or to high school this fall, I need you to stop what you’re doing and listen to this podcast right now. Because here’s what most parents don’t realize.

The decisions that get made between now and the end of this school year will either set your child up for a strong start or leave them scrambling in August and by August it’s often too late to fix it.

Welcome to the Water Prairie Chronicles. I’m your host Tonya Wollum, and I’m glad you’re here. One of the things that I do with Water Prairie is I coach families through the IEP process. I’ve also lived this as a parent, and today I’m going to walk you through exactly what you need to do right now in April to make sure your child’s IEP transition goes smoothly.

Let me explain why April is actually the most important time of the year for this. Most parents think transition planning is something that happens over the summer or maybe at the first meeting of the new school year. But here’s the truth. By the time your child walks through the school doors in August or September, all of the major decisions about their services and supports have already been made.

IEP teams are scheduling annual review meetings. Right now, teachers are finishing up progress reports. Case managers are already passing off files and the new school, the middle school or high school, is already putting together the schedule and service minutes for next year.

If you’re not part of that conversation, your child’s needs may not make it into the plan, so let’s fix that. Here are the five things I want you to do right now. Step one, get in front of your child’s IEP team before the school year ends, and specifically ask to have a transition conversation at that meeting.

If your child’s annual IEP review is coming up in May or June, that’s the perfect timing. But here’s what I want you to do differently than you might have done before. Don’t just show up to review goals and sign papers. Come with a purpose before the meeting. Send an email to the case manager and put this in writing. Asking that the agenda include a discussion about how your child’s services will transfer to the new building.

Ask specifically, how will the current accommodations carry over? Who will be the point of contact at the new school? Will there be a meeting with the receiving schools team before the end of the year? Those are reasonable questions. They are your legal right to ask and asking them now before school ends gives you time to respond if the answers aren’t what you hoped.

If the annual review isn’t until fall, request, a separate transition planning meeting, you can do that. You just need to ask in writing. So step two is about understanding what’s actually different in the new environment, because this transition is more than just a building change.

When your child moves from elementary to middle school, they go from one primary teacher or a small team of teachers who knows them well. They know their triggers, they know their needs, they know their whole story, and they’re moving to six or seven different teachers rotating periods, and a completely different expectation of independence.

They may be traveling across a large school building. At the high school level, you now have graduation requirements, course selection, and depending on your state mandatory transition planning goals that look toward life after school. So what does this mean for the IEP?

First: Check whether the accommodations listed are specific enough to survive a teacher change. “Extended time” is pretty standard, but what about “preferential seating away from the hallway door,” or “reduced homework load that matches the actual standard, not a modified version?” Those specifics matter more than ever when a new teacher is reading that document cold on day one.

Second, ask whether the service minutes will stay the same or change. Sometimes a school district will quietly reduce services during a transition. Ask the question directly: “Will the number of minutes of speech, ot, or resource support stay the same in the new building?” Get the answer in writing.

And if you’re moving into high school, find out which diploma track your child is on and make sure the team is aligned on that because that decision affects everything from class selection to post-secondary planning.

Step three, and this is something I teach in my coaching sessions, is what I call the highlighter method.

Pull out your child’s current, IEP. Get it out of the binder, off the portal, wherever it lives. You’re going to read through it with fresh eyes and ask yourself, does this document actually sound like my child? One of the biggest red flags I see in IEPs, especially ones that are about to transition to a new school, is what I call that zombie, P-L-A-A-F-P.

You’ve heard about this in past. Episodes that I’ve released. This is the present levels of academic achievement and functional performance. Whenever you see P-L-A-A-F-P, that’s what it stands for, and that’s the section of the IEP that I’m talking about. It’s supposed to describe where your child is right now today, but a zombie, P-L-A-A-F-P is one that uses the same generic language year after year after year.

Or it pulls phrases that sound like they could apply to any child, not specific for your child. Highlight the sections that are specific to your child, their name, their actual strengths, their actual struggles. If you can barely find anything to highlight that’s a problem before this school year ends, you want.

The P-L-A-A-F-P section to be current and accurate, because that document is the foundation, everything else is built on a new team. Reading a stale P-L-A-A-F-P will not know what your child actually needs, and they’ll make decisions based on bad information. Step four is one that I think is underestimated and it’s this, talk to your child.

I know that might sound obvious, but hear me out in my coaching work, I often ask parents, what does your child think is working in school right now? What do they think is hard? And sometimes the parent doesn’t know because we get so focused on the paperwork, the meetings, the fight for services, and we forget to ask the person most affected by this.

Now, I want you to do this with one thing in mind. I call this the can’t versus won’t framework. When your child says, school is hard or I hate this class, we want to ask. Is this hard because they can’t do it without support or because they won’t do it because the support isn’t right. This distinction matters when you’re going into a new building because if your child hasn’t been getting what they need this year and they’ve been struggling silently, the transition is actually a fresh start.

Opportunity to get it right. Let your child tell you what accommodation matters most to them. Let them start to build their own self-advocacy voice because in middle school and high school, they’re going to need it. And step five is the one that will save you so much stress later.

Build your advocacy file before school ends. Right now I want you to request in writing copies of the current IEP complete and signed the most recent evaluation report. All progress reports from the school year, any correspondence you’ve had with the school about your child’s needs. You may have these already, but gather them all together and if you don’t have them, ask the school for a copy.

Put these in a folder, a physical folder, digital folder, doesn’t really matter. You choose, label it clearly, and this file is going to go with you to every meeting at the new school next year. If you have old files that are similar to this, put them into another folder so that they’re not continuing to go with you.

You want everything to be fresh for your new year. Why does this matter? Because when you show up to a new team and you have documentation, you’re no longer just a parent telling a story. You’re an informed advocate with evidence. That changes the conversation, and if anything comes up over the summer, if you disagree with something, if your child regresses, if a service doesn’t transfer correctly, you have a paper trail, your child is protected.

 I know it’s a lot to keep track of, and I don’t want you to feel overwhelmed, so I’ve put together something that might help you.

I have a free end-of-school-year, IEP checklist that walks you through everything we talked about today and a few more things to, it’s in a simple, printable format that you can check off as you go. The link to download it is in the show notes. It’s free.

It’s yours. Print it out. Stick it on your refrigerator and let it guide you through the next few weeks. This is the time of year where parents who are prepared get very different outcomes than parents who wait. I don’t want you to wait. If you have any questions about what you found in the IEP or if you want someone to walk through your child’s specific situation with you, I offer one-on-one IEP coaching, including draft audits, and I would love to support you.

The link for that is also in the description, and if this video was helpful to you, share it with another parent who needs it right now because this information shouldn’t be a secret. Thanks for joining me today. I’ll see you next time.

When should I start planning for my child’s move to a new school building? You should start now, ideally in April or May, before the current school year ends and schedules are finalized .

Can I request an IEP meeting even if my annual review isn’t due yet? Yes, you have the legal right to request a transition planning meeting in writing at any time .

What is a “Zombie PLAAFP”? This is a term for a “Present Levels” section that uses the same generic or outdated language year after year instead of reflecting the child’s current needs.

How do accommodations change in middle school? Since children move between multiple teachers, accommodations must be specific enough to be understood by staff who don’t know the child’s history .

What documents should I have in my advocacy file? You should gather the current signed IEP, the most recent evaluation, all progress reports, and any relevant correspondence .

Does my child stay on the same diploma track in high school? It depends on the IEP team’s decision; you should ask directly which track your child is on, as it affects all future class selections .

How can I help my child advocate for themselves? Start by asking them what supports they feel are working or making school hard, helping them find their voice before they reach high school .

The post 152. Is Your Child’s IEP Ready for Middle or High School? Do This NOW Before Fall appeared first on Water Prairie.

Are you feeling the weight of the "Disability Squeeze"? Learn how to identify financial burnout and the first steps toward stability for special needs families.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

Have you ever felt a heavy, persistent exhaustion that sleep just can’t fix? For parents in the disability community, this is often more than just “caregiver fatigue”—it’s financial burnout.

In this interview with Ann Hynek, founder of Hestia Wealth & Wellness, we pulled back the curtain on the “Disability Squeeze.” Recent 2026 data shows that 90% of special needs caregivers admit retirement planning isn’t their main priority because they are consumed by the immediate $30,000+ annual out-of-pocket costs of care.

One note Ann added after the interview finished was that the cap on the ABLE account is $100k. But the annual contribution limit to an ABLE account, at least in Colorado, is $20k. So if the person has 100k in a 529, they can contribute $20k over five years. As you listen to that part of the interview, this will help you know how you can apply what you’re learning in this interview.

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/

Ann Hynek is the Founder of Hestia Wealth and Wellness, helping families navigate the complex world of special needs. After 15 years in finance, Ann experienced firsthand how challenging it is to navigate the special needs system when her son was diagnosed with autism. Ann created Hestia for families who need financial advice, benefits optimization, care coordination, and long-term wealth planning. She is a Chartered Special Needs Consultant and member of the Academy of Special Needs Planners.

(Recorded March 24, 2026)

Full Transcript of Episode 151:

Ann: I hate to say Special Needs Trusts, because I think people hear the word “trust” and they’re like, “I don’t fly private.” Like, “I don’t need a trust fund.” But the reality is Special Needs Trusts are created specifically for families to have resources set aside for their loved one.

Tonya: According to the 2025 reports from JAMA Pediatrics, the lifetime cost of raising a child with a disability can range from $1.4 million to over $2.4 million. Today, we’re diving into a topic that is often felt, but rarely named, that’s financial burnout. Welcome to the Water Prairie Chronicles, the podcast for parents of children with disabilities.

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

On this podcast, I talk a lot about the emotional and physical toll of caregiving, but there’s a specific heavy exhaustion that comes from the constant disability squeeze on our bank accounts. If you feel like you’re running on empty, you aren’t imagining it.

Joining me today is Ann Hynek, founder of Hestia Wealth and Wellness, who works specifically with families navigating the financial reality of raising a child with a disability. She’s going to help us understand why this is happening and what we can do about it. Ann, welcome to Water Prairie.

Ann: Thank you so much for having me, Tonya.

Tonya: This is one interview that, hits close to home for me because it’s so important that we help our families get as strong as they can.

 One thing that we do talk a lot about is caregiver burnout. A lot of our listeners have heard of that, but we don’t always talk about financial burnout.

 It sounds different. It may feel different, but it’s a name that we need to pull in there. So, can you tell me what exactly does financial burnout look like inside a family, not just on a spreadsheet, but in real life? And why do so many special needs parents experience it without ever having a name for what they’re going through?

Ann: Caregiving and caregiver burnout is definitely a huge topic. The US has about 63 million caregivers.

 Many provide complex unpaid care, and 60% of caregivers experience symptoms of burnout relating to those responsibilities. And I think one of the unique things about caregiver burnout, specifically when it comes to finances is that there are a lot of invisible costs when it comes to raising a child with special needs.

 We as parents, face costs that most families never anticipate. There’s therapies and specialists, there’s adaptable equipment, there’s private school or educational advocates, and then medical travel if you need to find a specialist. That’s not very close to your home. And then there’s the reduced ability for one parent to work.

So I feel like we see articles all the time of the growing cost of childcare and how more and more parents have to stay home because they can’t afford daycare, as a dual-income household, and I think this is even more prevalent for families who have children with special needs. They face lost income because one parent has to reduce hours or leave the workforce altogether.

 They have to care for their child around the clock. They have to homeschool their child. And I think, I think this really creates enormous pressure over time. So it’s, it’s those, it’s those hidden costs that nobody sees or nobody considers. I think that is probably the number one source of burnout.

 Also when it comes to financial burnout, one of the scariest questions we as special needs parents all ask ourselves is what happens when I’m no longer here?

And I think one of the things that I just wanna say to everyone and remind myself of on a regular basis is you don’t need to be an expert in everything. you’re an expert when it comes to your child and what they need. And so I think before anything, before you worry about the money, before you worry about what’s going to happen in the long term.

What’s helpful for me, what’s been helpful for me is creating a care plan. And so instead of wondering who’s gonna be in charge, who will be the guardian, who will take care of the money, who will administer my son’s resources, and his needs? It’s really about writing that down and essentially creating a manual or a playbook specifically for your kids.

So when you’re no longer around, someone can take it on and read it and say, okay, these are the things that we wanna do. We wanna make this transition as smooth as possible. And so I have to say that has really helped me. I think the other thing when it comes to financial burnout is just the total and complete isolation.

I think we as caregivers, feel that isolation a lot. I know that when my son was diagnosed, there were obviously a lot of emotions, but I think isolation was probably one of the starkest and most difficult to deal with. I also think when it comes to finances, just in general, most people don’t really like to talk about money, and most people don’t like to face their own mortality.

And so I think especially when it comes to special needs families, there’s even more isolation because of those very facts. I think the best thing that I did to help me through that was find moms like me. It’s like, find your people. You need to be in a place where there are other people who get it, and you can talk to them about what you are going through and ask them questions.

So you can even get used to then talking about finances and asking financial questions in an environment where you feel safe. But I think finding your people is definitely the number one, the number one thing that people need to, to try.

Tonya: I’m gonna jump in on that too.

 Listeners, if you haven’t heard me say this over and over again about finding your people, your support. ’cause you have to have this.

Ann: Yeah.

Tonya: It doesn’t have to be a parent with the exact same diagnosis for their child.

Ann: Yes.

Tonya: You need another parent who understands your path, but it could be like, my children have a different diagnosis than your son.

 But it doesn’t mean that we can’t connect and we can’t support each other.

Ann: Right.

Tonya: We understand therapy appointments. We understand medical costs, and the big one that all of our parents understand is that unknown. You know, you go through all that emotion of the first diagnosis. And, I don’t know about you, but for me, I jumped immediately to adulthood.

Like, where are they gonna land later, you know? ’cause all of your dreams change, and we’ve addressed the grief of this sometimes.

 That you have to go through different, different levels and stages.

Ann: Yeah.

Tonya: Until you’re able to embrace your child for who they are and let them kind of direct that path for you.

And then it’s very freeing once you get to that point. But there’s a little journey you have to go on to get there. And, and, and you’ll go through stages of this as, as, as your child grows. So parents, you don’t have to find someone exactly like you, you just need someone out there that you can go to and start with that.

And there are a lot of support groups out there. There are a lot of larger organizations that can help you find that group. And we’ve said this over and over again. Facebook may be your first step. There’s a lot of groups there that can get you connected. At least virtually until you can find someone who’s in your community.

Ann: Yeah, no, that’s, that’s, that’s absolutely right. I think what was, what was interesting, and one of the things that I would probably do differently if I had the opportunity to go back, is I went down a rabbit hole on Google after my son’s diagnosis. And to be completely honest with you, that made me feel even more isolated, right?

Because there were so many providers out there, but I had no idea. Which one was right for my son. And the ones that I selected, or the ones that I reached out to, a lot of them said, you know, we’re not taking new patients, or I’m not taking on new clients. And so that, that was especially difficult. And I think finding the moms groups that I found, meeting the other moms that I’ve met.

They said, this is who I work with. And so it was almost one of those things where it was like, oh, I have a warm introduction and I’m not just calling strangers.

Tonya: And even knowing what questions to ask Yes. You don’t even know to begin with.

Ann: Exactly.

Tonya: And, and those other parents can help you.

It’s where what you and I have experienced can help the next family that’s younger than ours. Know where to start just by hearing the part, part of the conversation today, even though it may not be what the topic is.

Ann: Yes.

Tonya: They’re gonna hear something in this, in this conversation that’s gonna trigger a question.

Ann: Absolutely.

Tonya: That at least, at least they’re starting on, on, on another path here to, to go on and start asking.

Ann: Yes, exactly.

Tonya: Yeah. For the, for the parents who’ve just heard about that, they’ve never thought about putting a name to this before.

Ann: Mm-hmm.

Tonya: But they’re, they’re hearing what you described there. Um.

And thinking, this is me. You’re, you’re talking about me. What’s one thing they could do this week to start getting a better grasp on it?

Ann: Okay. That’s, I think that’s a great question. So I don’t want to assume that everyone is just like me, but when I am thinking about a million different things, whether it’s therapies for my son or where he’s going to go to school, or how to get an advocate on an IEP and all of those different things, if I don’t write that down.

I slowly start to go crazy. And so I think one of the best things that parents can do right now as they start to figure out what their financial plan is going to look like or what their financial concerns even are, is just. Start writing it down. Figure out how much am I paying the therapist on a monthly basis?

How much longer do I think we’ll be needing this therapist? Do we need to look at other specialists? What does it look for in terms of special programs for summer camp? What are, what are we spending on home health aids and people who come in and, and help. Um, but then also looking at. The benefits through your health insurance, like what is offered, what is not offered?

Just writing everything down and essentially making an inventory of the resources that you have and then the areas where you need to spend. Um, because I think when it’s all in your head and you’re like, this is just a huge number, I can’t even imagine, I don’t wanna think about it. It just makes it that much more scary and the less likely you are to start planning.

Tonya: And I, I think this is true, whether you have a child with special needs or not.

Ann: Oh, absolutely.

Tonya: When you look at everything,

Ann: yes.

Tonya: It’s overwhelming.

Ann: Absolutely. Yeah. Absolutely.

Tonya: But even more so because we do know that we recognize we have extra expenses that are out there.

Ann: Mm-hmm.

Tonya: Um, and I, I wanna reinforce what you said about, um, when we, we may not like to think about when we’re gone, but you had talked about writing down.

Things like what, and I’m assuming you’re talking about what is the routine, what is

Ann: Yes,

Tonya: so that that transition works. Parents, a lot of you are already doing that to some extent. If your parent comes over to give you a time to go to an appointment for yourself, you’ve already kind of gone through this step.

Thinking through how, like what, what do you tell your mom when she comes to watch your child?

Ann: Mm-hmm.

Tonya: Or, or if, if, if you’re able to have a babysitter, maybe you have someone in your community who’s, who’s capable of coming in. Mm-hmm. Um, or if you have respite care, you’re transferring this information on a smaller scale already.

If you have that in writing. It’s already gotten you started. And so, so I think if you, if you think of it that way, you’re not thinking of the entire life. What do I put down exactly. In, in, in one sitting on the, on this paper.

Ann: Yes, exactly.

Tonya: And I know for me, I had, I had just journals for both the kids because at different times there were different medical issues that had to be followed.

Ann: Mm-hmm.

Tonya: And it helped me at least to know. That I wasn’t spending two hours having to transfer all this information.

Ann: Yes.

Tonya: It was just like a little flip, flip thing that if this happens, this is, this is what, what our next step is.

Ann: Exactly.

Tonya: And, and it had everyone’s phone numbers and, and doctors and all of that in there too.

Ann: Yeah.

Tonya: Thankfully never needed to be used while I was gone, but at least it was there.

Ann: Yeah, absolutely. So you’re doing this already and I, I think one of the things is, um. The one way to think about it is like, just start with what their favorite things are and like Yeah. What calms them down. I mean, you probably wrote this in your journals.

Um, you know, what medication they take, what foods they like, that sort of thing. And just starting there I think is really helpful.

Tonya: Yeah. If you’re involved in a church and you’re dropping them off in a, a daycare situation, you know, what are you telling them when you drop them off? You know, they have a lovey there, they have something that’s there.

So, so, uh, and, and not all of our families are in a situation where they can do that yet.

Ann: Mm-hmm.

Tonya: But many of them are where they, they are doing a handoff for at least a half hour to an hour maybe.

So I wanna take us back to a moment that a lot of our families have lived through, and that’s when you get a diagnosis.

You mentioned this just a minute ago. Yep. Suddenly everything that you thought your financial future looked like doesn’t fit anymore.

Ann: Mm-hmm.

Tonya: The college savings plan that you thought about, the retirement timeline, the budget that you built, none of it was designed for this that you’re facing now.

Ann: Mm-hmm.

Mm-hmm.

Tonya: In that moment, a lot of parents either go into full panic mode. Or they go completely numb and usually it’s one or the other initially, and then, then we pull from there.

Ann: Right, exactly.

Tonya: So neither of those are strategies. Mm-hmm. And, Ann, I want you to speak directly to that parent, um, specifically for that family who just received the diagnosis and is realizing that their entire financial plan needs to be rebuilt from the ground up.

Ann: Mm-hmm.

Tonya: What’s their first step? Not the whole plan, just the first step that they need to think about.

Ann: Great question. So I think, um, as I, as I mentioned before, the first thing I would do is just write things down and not even, not even just your current budget and your current income and your current benefits, but just write down all the questions that you have.

Tonya: Good idea.

Ann: Because again, I think when it’s all in your head and you’re just completely overwhelmed, especially when you’re emotional and overwhelmed. We can start to spin essentially and start to feel, um, like there really is no hope or there’s no next step that’s going to be helpful. Um, and so I think just writing down all the questions and figuring out, okay, where are the gaps?

If, if, um, we were to be spending money on resources, you know, is there something where we can start looking into public benefits? Is there something where, um. We can talk to someone within our community who knows more about special needs or, or daycares for special needs children or resources for special needs children.

Because I think, I think when you get a diagnosis, it’s of course super emotional, but then all the mind, all the, all the things that run through your head about what if this happens or what if this happens or how am I going to pay for this? I think as we talked about, it can be extremely overwhelming and people like you had, like you said, tend to avoid it.

But I think, and I, and I don’t wanna sound harsh, but I think one of the things that you have to remember is that not planning is a financial decision.

Tonya: Yeah.

Ann: And I think if. I wanna be sensitive to the fact that you as a special needs parent, you are surviving day to day. Like that is the goal. Like figuring out, okay, what am I going to do about this?

This happened. What happens if this happens? Again, those sort of things. It’s all about survival, but what I would like to encourage people to start considering is. Maybe the day to day would be a little bit easier to face if there’s one less thing that you have to worry about. And that would be a financial plan where you’re figuring out, here’s the savings that I have, here are the public benefits that we’re going to be leaning into.

Here are the tools and resources we can use as our child gets older. Older. So an ABLE Account, for example, um, I, I, I hate to say Special Needs Trusts, um, because I think people hear the word trust and they’re like, I don’t fly private. Like I don’t need a trust fund. But the reality is Special Needs Trusts are created specifically for families to have resources set aside for their loved one.

That doesn’t impact their eligibility for public benefits. And so I think just having that in place and it’s not something where you have to put a ton of money into it immediately. It’s something where you can grow it over time. Mm-hmm. Um, there’s also an option, um, for some families they find that.

Having a life insurance policy and having the Special Needs Trust listed as the beneficiary is also helpful. So again, you don’t have to be a millionaire during your lifetime, but you can leave proceeds from life insurance to your child in a Special Needs Trust that can then help care for them throughout their lifetime.

Tonya: Listeners, we have talked about ABLE Accounts before. We’ve talked about the trust before. I’ll link anything that we’ve covered in past interviews on these topics in the show notes. So if you wanna do a deeper dive, you can go in and hear some different experts coming in that have laid all of that out for us too.

 ‘Cause I think the more you hear this and the more different angles that you hear it from, the more it’s gonna make sense to you.

Ann: Yes. Yeah, absolutely.

Tonya: Alright, so talking about cost, um, and wise, we’re trying to think through like what we may have. I think most of us came in once, once we had that diagnosis, we knew there was gonna be some extra costs.

Mm-hmm. It kind of goes without saying, um, because most of them have some type of medical piece, whether it’s therapies or um, medical doctors or surgeries. Um, we expect the copays, we expect the things on that obvious list. What we don’t always expect are the costs that nobody warned us about. Mm-hmm. The ones that don’t show up on the brochure, they, they just quietly drain your account over time and then one day you look up and you wonder where’d all the money go to?

You know, it’s like that invisible tax that was there of raising a child with a disability. Um, so beyond the therapies and the copays, those costs that we expect, what are some of the financial drains that consistently blindside us?

Ann: You know, obviously there are a lot of providers out there and sometimes you find ones that work.

Um, well for you and then maybe they pivot and do something else, and then you’re left finding a new provider who might not take your insurance or might not take any insurance. And so I think one of the things that can be especially derailing is when you need a new provider or a new specialist, and it’s so specialized that.

They don’t take insurance, they only take cash, or they’re located in a whole other state and you have to travel to see them. Um, so I think that obviously adds a lot of complication and a lot of additional money on top of what you are already paying.

Tonya: Yeah. That was that you, you hit on part of that. I think sometimes it’s the travel.

Ann: Yes.

Tonya: Um, for some of our families, they have multiple children. So it may not be the cost of that copay, but it might be the cost of the babysitter.

Ann: Yes.

Tonya: For the other children while they’re going, um, there’s a lot of different things, specialized equipment. Um, there were things for my daughter who’s visually impaired that I was able to make at home.

Ann: Mm-hmm.

Tonya: Had I not been a crafty person, I was gonna have to find someone else who could help me do that.

Ann: Yes.

Tonya: Yeah. And, and make it for me. So, um, good point. So there may not always be things that are required. But if we’re going to give our children the best chance at fulfilling their path to their best potential, there are costs that are usually part part of that.

Ann: Yeah, absolutely. I think, I think specialized equipment is certainly one of those things where costs can start to creep up. I think the other thing too is having to make your home more accessible. Yes. Like, those are definitely costs that I think can, can arise and, and get rather large, rather quickly.

Tonya: And, and there, there’s one cost that I don’t think anyone really thinks about.

Um, and you, you may face this more just because of the diagnosis that you have within your family. Sometimes it’s easier to bring family celebrations to you than to take your family to grandma’s house. Mm-hmm. Or to aunt and uncle’s house.

Ann: Mm-hmm.

Tonya: And so now you have. The burden of the preparing the food, cleaning the house.

Yes. You know, and if you need to spend more time with your child, you may have to hire someone to help you with some of those things.

 We talked about, about isolation earlier.

Ann: Mm-hmm.

Tonya: The, the, the counter to that is staying isolated.

Ann: Right.

Tonya: But if you want to stay involved with family, sometimes. You may be in a situation where you’re better off if you say, why don’t you, come to us this time. Because then your child has a safe place they can go to.

They have their comforts around them, and you have all that equipment

Ann: mm-hmm.

Tonya: Already in the home.

Ann: Right.

Tonya: So monitors or whatever you may have.

Ann: Exactly.

Tonya: And when we talk about equipment, you’re right, some of our families have atrocious amounts of cost for equipment. And there’s not always organizations that can help with that.

Ann: Yes.

Tonya: So there are long waiting lists trying to get in to set some of that equipment.

Ann: Yes. Yeah. And I think that’s also where, you know, those parents groups can come in handy. I’m part of a parent group here in Colorado, and yes, you buy equipment for your child, but your child continues growing, so then you need more equipment.

And so I think within those parent groups. There can be the opportunity where you can say, I’m looking for X, and maybe someone has outgrown theirs and they’re looking to, to give it to somebody else. Um, so, you know, finding people who can help you with those resources because they’ve been there, um, and help alleviate that.

Tonya: I love that example. And listeners, if you’re in a situation where you have some equipment that you’re. Outgrowing, please look and see who’s out there.

Ann: Mm-hmm.

Tonya: Um, because, because you, you, you know what it takes to try to get it, and maybe it’ll help you with the, with the next piece. You’re, you’re, you’re looking for yourself.

Yeah. I know there are some limits legally as far as what can or can’t be sold.

Ann: Yes.

Tonya: Um, just because of medical equipment. Mm-hmm. And that, and that makes it a little bit harder, but you can always gift it.

Ann: Mm-hmm. Yes, exactly.

Tonya: So let’s change gears a little bit. Um, and this part, we’ve talked about grief before.

Mm-hmm. But there’s a specific kind of guilt that lives in special needs parents, and I wanna talk about that directly because, um, I don’t think we can cover it enough. And the guilt says if there’s a therapy and intervention, a program, a tool that could help my child, I have to try it right now. I don’t have time to wait.

I have to get there right now. And alongside that is another guilt. And it’s the one that says, I can’t put money in my own retirement when my child needs it today.

Ann: Yes.

Tonya: And both of these are real. Mm-hmm. We are, we’re parents. We love our children. We want what’s best for them, um, but they can drive families into a financial crisis.

So let’s talk about this. Families feel that they have to fund every therapy and intervention available mm-hmm. Right now. And that saving themselves is being selfish when their child has needs. How do we help a family? Hold both of those truths at the same time.

Ann: Sure. Yeah, that’s a, that’s a great question.

So I think one of the things that I wish someone would’ve told me when my son was diagnosed with autism is, okay, I know that you’re a fixer and you’re a helper and you just wanna fix everything and help everything and just have everything lined up. So you’ve got the therapies and you have the providers and you know who to call and you know who to reach out to in, in the event of X or Y happening.

And I think the first thing that I would say is just. Slow down. Like there, there is time because if you try to do everything all at once, you’re just going to make yourself crazy and maybe even make the wrong decision with the wrong provider. So again, I think leaning on your networks of friends, um, or other people who have been there and asking for referrals, you know, maybe that person who they refer you to doesn’t take your insurance, or maybe they don’t take any insurance at all.

But those people definitely know other people who do what they do, and they might know somebody who does take insurance or someone who does take your insurance. So I think, I think as parents of special needs children, it’s like it’s, it’s our responsibility to to solve everything right now.

Tonya: Right.

Ann: And need, and, and it does, it doesn’t work that way because you might ultimately be creating more work for yourself down the line.

And God knows we all have. Way too much work to do as it is. So I think, I think slowing down can be very helpful and I know, I know that that’s completely and totally against our nature as parents, but I think it’s kind of how we’ll keep ourselves sane in the long run and find the right solution for our child and for our family.

Um, what was the second part of your question?

Tonya: Um, as far as taking care of their own,

Ann: oh, their own retirement. Okay. Okay. Um, okay, so, so there’s obviously, um, a lot of things to consider when, when saving for your own retirement. I think, um, you definitely don’t want to neglect your retirement savings to support your child in the immediate term because we don’t know what the future.

Holds. Mm-hmm. And if you are taking money out of your retirement savings for today, you might actually need that retirement savings because your child might continue to live with you through their lifetime. And so I think there’s so much power and retirement savings, especially when it comes out, comes down to.

Getting a 401k match at work and maxing out your 401k at work, if you have the opportunity to do so, because you do wanna let that money grow. You don’t know what is coming down the pike in the future. And I think certainly the urgency of what is happening today can make it very tempting to tap into that money.

But in the longer term, you’re gonna want it there. So I think finding other ways. To fund today’s expenses. So I mentioned maxing out your 401k or contributing enough to get the employer match, if that’s an option for you. Um, but also looking into health savings accounts, like that’s another really great resource in terms of, um, tax advantages.

So you’re, so you’re setting aside money for your retirement, but then you’re also setting aside money. For medical costs. Um, so there’s different ways that you can make contributions that can potentially suit both needs.

Tonya: And I’m gonna finish this up by saying I caught it. Guilt. ’cause we do experience that feeling.

Mm-hmm. But parents, you’re not being selfish.

Ann: Ugh.

Tonya: By looking at your future financial security as well, you’re actually being more generous because you’re making sure that you can still be there for your child as long as you can. If you rob yourself of that, you’re not going to be able to be there to support them.

Ann: That’s exactly right. And I just, it’s so cliche, but it’s true. You have to put on your own mask first.

Tonya: Yeah, yeah. But in a panic. It’s really hard to do that. It’s, isn’t it?

Ann: It absolutely is. Yes. Yeah. You feel like you have to do everything right now, and there’s just not enough time and not enough money, but just slow down.

Tonya: In, in our community, and, and we have parents listening who have older children, we have parents who have just gotten a diagnosis, or they’re not even, they don’t have a diagnosis yet. They just have that first inkling of question and they’re, they’re finding us as they’re searching these different things.

Mm-hmm. Um, but within our community, we hear all the time that parents, they’ve been fighting for the child for years. Mm-hmm. They’re exhausted. They’re stretched thin. They don’t know. That there are financial tools specifically designed for their situation. Mm-hmm. And they’ve never been told about it.

Right. So we, we mentioned ABLE Accounts a while ago. Mm-hmm. We mentioned Special Needs Trust, Medicaid waivers are out there. Mm-hmm. SSI, um, depending on your child’s age, SSDI may an option.

Ann: Mm-hmm.

Tonya: Um, these aren’t just legal terms. They’re real resources that can change a family’s financial picture and a lot of our families simply are not accessing them.

 What do you feel are the most commonly overlooked financial tools and resources? Not necessarily with that list. There may be some others that I didn’t mention yet. And, um, what can families, how, how can they find out if they already qualify for them and why are there so many families that leave this on the table?

Ann: I think, you know, especially being in the financial services industry for as long as I have, there are so many acronyms.

Tonya: Yeah.

Ann: And trying to even remember what half of this stuff means. It is a full-time job unto itself. You have, you need a PhD. Um, so I think that is probably a deterrent for a lot of parents because it’s just like, what, what does all of this mean?

Um, I’m just still trying to figure out what this diagnosis means. Um, so I think it’s, it’s, it’s ultimately just mental overload. Um, but I think one of the things that I try to remind people is one of the best things that they can do as their child transitions to adulthood and turns 18 is applying for SSI, which is supplemental security income and there are obviously some, some, um, income and asset limits to that.

But if you do that as soon as they turn 18. I think it’s, it’s gonna help you in the long run because in most states, when you qualify for SSI, you then immediately qualify for Medicaid.

 Health expenses is really where that money drain starts.

And so if you can get your child, your loved one. On Medicaid, it’s probably gonna help you a lot down the road. And the reason why I encourage people to do it when their child turns 18 is because the older they get, the harder it is to qualify. So I would cover that base immediately, mark it on the calendar for their 18th birthday.

We’re gonna go apply for SSI and Medicaid. Um, and I think, I think that’s overlooked for a lot of people because they think, you know. I make too much money or how do I know if they’re going to qualify? You know, is our public benefits right for our family? And I think the thing to remember is when your, when your child or loved one turns 18, they’re an adult now.

And so their money in their assets are in their name. And so yes, by extension you might be able to help them financially. That doesn’t necessarily mean that they cannot qualify for benefits because they are their own person, uh, at this point in the eyes of the law.

Tonya: 18 is that magic number. Know parents, you know, 18, it, it’s a birthday. It’s a legal change in life. We, we know that no matter what the abilities of our child are, but in the special needs parenting world. It’s even more crucial ’cause a lot of things are happening at that point.

Ann: Yes.

Tonya: And early on we mentioned the ABLE Accounts.

Ann: Mm-hmm.

Tonya: We mentioned the um, the Special Needs Trust.

Ann: Mm-hmm.

Tonya: And I think it’s important that we understand why those two specific accounts are so important. And part of it is when that child turns 18. We want them to be able to qualify for SSI and Medicaid.

Can you tell me today? Now this is um, March of 2026, so if you’re listening to the six months from now or a year from now, things may have changed, but as of today, Ann, what are the numbers that our kids need to be under to be able to qualify for these, these benefits?

Ann: Well, I’m, I’m, I’m glad that you asked, and I, and I do get a little fired up about this, so just warning you

Tonya: and these numbers change too.

Ann: Yes, I know.

Tonya: So that’s what I’m saying. As of today, where are we?

Ann: Yeah. So as of today, March 24th, 2026, the asset limit for an individual with special needs to be able to qualify for SSI is $2,000. Total to their name. So if you think about if, if you think about them potentially having part-time work or maybe getting an inheritance from their grandparents, obviously an inheritance it’s, it’s very well intended.

It’s very kind. It’s very generous. But even if the grandparents leave their grandchild a thousand dollars. That jeopardizes their ability to access right benefits because the limit is, is 2000. And if they have more than 2000, the benefits are suspended. And I think, I think that 2000 number has not been updated since the HW Bush administration.

Um, so I don’t know if it’s gonna be updated anytime soon. Um, but, but that’s where we are. Uh, and so. That’s why it’s so important to use the, the financial tools that are available because you can set up an ABLE Account, you can set up an ABLE Account online, and it makes it possible for you to save for your loved one.

Um, and it doesn’t count towards that SSI asset limit as long as those. Those funds are used for, um, qualified disability expenses. So that’s everything from transportation, um, to housing, to education, to an in-home aide, um, whatever you need, whatever you need them for, as long as it’s a qualified disability, um, expense.

And so that way, you know, they’re still getting the public benefits, but they’re. They’re able to maintain the standard of living that they’ve come accustomed to living with their parents,

Tonya: because not all of our families have a diagnosis from the time the child’s born.

Ann: Correct.

Tonya: So we may have a five or 6-year-old now.

Ann: Mm-hmm.

Tonya: Who is just now being diagnosed and grandparents gave that child a gift when they were born for their college account.

Ann: Yep.

Tonya: They have a 529 account that has more than $2,000 in it.

Ann: Yep.

Tonya: And a 529 be transferred to an ABLE Account?

Ann: Yes. The assets from a 529 can be transferred into an ABLE Account.

Tonya: So if there’s too much in there and is there a cap on the ABLE Account right now?

Ann: So in, in most states, the cap, um, on, on an ABLE Account is a hundred thousand dollars.

Tonya: Okay. Okay. So more than likely that 5-year-old is not there yet Correct. In the college account, but Correct. If they’re, they may not have as many worries

Ann: Right.

Tonya: The kids, yes.

Ann: But they’ll have the worries if the money’s in the wrong place, so,

Tonya: yeah, exactly. Yeah. And that, it’s, it’s why I was thinking that and, and not all of us think of it that way.

Ann: Yeah.

Tonya: Because grandparents are very well-meaning. And a lot of times that’s where this extra money has come from.

Ann: Mm-hmm.

Tonya: Exactly. And um, and I think it’s important that our parents know how to talk to their parents about those trusts.

Ann: Yep.

Tonya: Because that’s a conversation grandma and grandpa may need to have to make sure that their financial paperwork is in order so that when the time comes. There’s not money given to, to little Johnny.

It’s given to his trust instead.

Ann: Yes, exactly.

Tonya: And um, and, and, and so there are ways to set this up parents. It’s just, and you may need some help with this, but at least we’re trying to give you the questions to start asking Yes. So you can get

Ann: exactly. Exactly. And so another, another resource that parents can use, um, is a third party, um, Special Needs Trust.

Uh, I don’t wanna go too far down the rabbit hole and bore your, bore your listeners, but there are essentially three different kinds of Special Needs Trust. There’s, uh, a first party Special Needs Trust, which essentially comes in if there is, um, say a settlement. If there was something that went wrong during birth, there’s a settlement with the hospital.

Those assets are technically in the name of the child. That’s where you would use the first party. Special Needs Trust, a third party Special Needs Trust is basically set up by that grandparent or set up. By that parent who wants to set aside funds, uh, for their loved one, not in their loved one’s name, so that they can still qualify, um, for public benefits.

And then the third one, um, is a Pooled Trust. And essentially what that is, is it’s, it’s, it’s a, it’s a collection of people who. Have funds in a trust, but they don’t necessarily have the resources to maintain a professional trustee for the duration, okay. Uh, of, of the trust. And so you put those funds into a pool trust with others, uh, who have disabilities, um, and special needs.

And then those funds are, are distributed, um, accordingly. So it kind of takes away that, that administrative expense that you would have with a third party Special Needs Trust. So that’s an option as well.

Tonya: So on a Pooled Trust, is the funds that that is allocated for your child, is it, does that money only go to that child?

Ann: So,

Tonya: or is it all pulled together and divided between everyone?

Ann: So the money, the money is allocated to that child, but in the event of the child’s death, the Pooled Trust keeps that money and then shares it with the remainders. Oh, okay. In the Pooled Trust? Yes.

Tonya: Going back to that, that 18 year.

Ann: Mm-hmm.

Tonya: Uh, magic age.

Ann: Yes.

Tonya: If our listeners are coming in and they have more than 10 years before their child’s going to hit 18, is there something they can do now before life gets in the way and it starts rushing at them at the end to start getting ready for that 18th birthday?

Ann: Great question. So if there are resource needs right now, there are Medicaid waivers.

Available, uh, through different states that essentially, that essentially allow for, for example, if your child is in a school district that isn’t able to accommodate their needs and they need to go to a private school to better accommodate their needs. For example, there’s a Medicaid waiver that’s associated with that.

So there, there are benefits and there are. What they call waivers, which I don’t know if the language necessarily makes sense, but I didn’t, I didn’t make the rules. Um, so there are benefits available through different Medicaid waivers and there are Medicaid waivers through, uh, each individual states as Medicaid is distributed, um, is allocated, I should say, at the state level.

Um, I think so. For example, in. In California, they use Medi-Cal, which is a little bit different. So sometimes the language is different, but there are waivers, uh, available in different states. I think the other thing, um, that I just wanna caution people on is there’s a lot of people, uh, applying for Medicaid waivers.

And so there might be a waiting list. In fact, there probably will be a, a waiting list. And another challenge that we’re obviously facing is. Budget cuts, um, across the country in terms of resources being allocated. So to answer your question, the child is not 18 yet. There are Medicaid waivers that can help, um, uh, supplement resources, but it is getting harder.

So

Tonya: I know in North Carolina where I’m sitting now mm-hmm. The average weight is about 10 years right now. And, um, and parents, if you’re not aware of it, once you get in there. Some of your physical needs can be covered with that, like diapers and things like that. Um, if, if not, not baby diapers, but if your child needs continuing, um, care like that, but you also may qualify for respite care.

Um, and so it is important if you, if your child qualifies, that you look into this and, and get on that list no matter what. It’s, I have heard that there are states out there where the wait list is not 10 years, but there are quite a few that are that long. Yeah. So, um, so if you, if you have any idea, I would look into that and go and get started with that, that, that process, even if you don’t use it, at least you’ve gotten.

Your, your foot in the door, you’re ready So that if you do face something where you need it, it’s, it’s ready to go.

Ann: Yeah. What, what is, what is the saying? If you don’t ask, you don’t get, so you might as well try.

Tonya: I wanna end our conversation somewhere that I think our community doesn’t go often enough, and that’s hope not toxic positivity, which is, is not what anyone ever likes.

Um, not everything’s gonna be fine, but real hope.

Ann: Mm-hmm.

Tonya: The kind that comes from actually knowing where you stand financially, having a plan and realizing that you do not have to choose between your child’s future and your own future. That two things can actually coexist. And I wanna give you a chance to speak to the parent who has been carrying this financial weight alone, maybe for years, and has forgotten what it feels like to breathe.

For those parents in our community who have been so deep in survival mode, that thinking about their finances, that thinking about their finances feels impossible. Can you share what you’ve seen happen for a family on the other side of that? All of that work? What does it actually look like, feel like when their special needs family finally gets their financial picture clear?

Ann: Great question. Um, so I, so it’s definitely, um, one of those things where, sorry, lemme move this, uh, out of the way and not mess up my sound. Um. So what I would say is that when I start with a special needs family and start working with them, I do prompt them to write everything down. So just give me a picture of where you are right now so that we can best work together.

And I think when you’ve written everything down, you can more easily identify where you have questions. And where you have gaps and where you might need the expertise of either a financial advisor or an attorney or another kind of consultant who can help you with these things. Um, I think it’s important for families to know, as I said before, you don’t have to hurry.

You can write down all of your questions and maybe not look at them again for a few months because life happens and things come up. But I think if you give yourself that 15 to 20 minutes to just get organized, it will pay off in in the long run. Um, you can figure out what questions you wanna ask. You can figure out where the gaps are, and then you can reach out to your mom group, to your dad group.

Ask them if they’ve ever had the same concerns. If they have somebody that they talk to, if they have a good attorney that they like to work with, so that you’re not completely flying blind and going down the Google rabbit hole like I did. And then I think, you know, again, it takes time. It has doesn’t have to be done to tomorrow.

You don’t have to be an expert in everything. So just know that there are people out there who can assist with these things, who have dedicated their entire careers to helping you with these kinds of things. Um, let them be the expert. You’re the expert on your kid. You know what your kid needs. You can focus there.

Just start by writing things down and then find people who can help because there are a lot of us.

Tonya: Perfect.

Ann: Good. Okay.

Tonya: So. Those that have been listening to us are gonna wanna know where, where they can find you, how can they connect with you, where, where are you online and what types of services do you offer?

Ann: People can find me via my website. It’s https://www.hestiawealthandwellness.com/. We’re also on Instagram @hestiawealth. TikTok @hestia.wealth, Facebook, Hestia Wealth & Wellness. And then, um, I am on LinkedIn, Ann Hynek and Hestia Wealth & Wellness is also on LinkedIn, so there’s a bunch of ways to get in touch.

Um, if you don’t wanna have a conversation with me and you just wanna start. Creating that list or building that list. Um, I actually created a, a clarity checklist, or at least I hope it brings clarity. So if you go to the website on the homepage, there’s a button in the upper right hand corner that says, start here, and you can download that checklist.

So it essentially gives you a template with those questions of where your benefits coming from now, what are the current expenses that you’re facing? Et cetera, et cetera. Um, it’s, it’s, I think it’s like three pages, but it’s, it’s that long because there are tables, so it’s not, you don’t have to fill the whole thing, so don’t be overwhelmed.

Um, but I, I definitely think it’ll help people at least to start to think about it, um, and start to identify the areas where they might need a little extra help or need to ask questions.

Tonya: And do you work, um, vir virtually, or in person or both?

Ann: So I am based in Colorado. Um, so people who are not located in Colorado, I work with, um, virtually, I work with people, uh, in, in all of the states, wherever, wherever they are.

Um, I offer consulting services. So if people are going through, say, one life transition where they just need help or they just need. A way to figure out, you know, what a Special Needs Trust could look like. Or maybe they only wanna talk about ABLE Accounts. Like that’s something that I can do. Um, I also work with families on a consulting basis to help them build.

That life plan. So creating that letter of intent, um, figuring out, you know, what specialists I can introduce them to. Um, with my son’s diagnosis, I’ve established a pretty vast network, um, of different, um, specialists and providers in, in Colorado and, and, um, California and Michigan. And so I. I think part of the value in working with me is I can introduce you to other people so that you’re not googling for, for additional help.

Right. So I, so I offer that, um, consulting piece. And then we also, um, offer investment management, um, under our platforms. So you can do the consulting with me or you can sign up to be, uh, an investment client. Um, we have an incredible chief investment officer who has been doing this for over 35 years. Um.

He’s very good. And, um, one of the added benefits of becoming an investment management client is that you get access to all of the consulting help, um, no matter when, no matter where.

Tonya: I will put the links for all of your contact information in the show notes.

 Thank you so much for sharing all of this with us. There’s, I think this is a topic that we need to, to address over and over again because one, as, as we said. The numbers change. Things change, but we also, as parents, we need time to digest it all. And it, it’s just so much that comes in. And if you’re not coming from a financial background, it can be so overwhelming.

And so I appreciate you breaking it down, helping us get a little more personal touch to this. And, sharing your level of expertise with us.

Ann: Oh, Tonya, it was my pleasure. Thank you so much for having me.

Tonya: To those of you listening, if today’s conversation felt like a mirror of your own life, please know you don’t have to carry this weight by yourself. As Ann shared, the first step isn’t fixing everything at once. It’s just making that first recalibration, starting with an inventory of where you are today and finding your people who truly understand this journey.

 If this episode spoke to you, please share it with another parent who might be feeling that hidden burnout today.

Let’s help each other move from just surviving to truly thriving. I’m Tonya Wollum. I’m glad you were here today, and I’ll see you next time.

1. What is the “Disability Squeeze” and why does it lead to financial burnout? The “Disability Squeeze” is the double-edged financial pressure unique to special needs families. It involves the high out-of-pocket costs for therapies, equipment, and medical care (the “squeeze” on expenses) combined with the reduced earning power of parents who must scale back work hours or leave the workforce to manage their child’s care (the “squeeze” on income). This constant state of financial survival leads to a specific “financial burnout” characterized by exhaustion, decision fatigue, and a feeling of hopelessness regarding the future.

2. Is it selfish to prioritize my retirement savings when my child has immediate needs? Absolutely not. In fact, your financial security is one of the greatest gifts you can give your child. If you do not have a stable retirement plan, the burden of your care may eventually fall on your child or their future support system. By ensuring you are financially independent in your later years, you protect your child’s future resources and ensure that you remain a strong, capable advocate for them as long as possible.

3. What is the very first step I should take after a new diagnosis? The first step is to take a “financial inventory” without judgment. Before making massive changes, document your current income, expenses, and immediate medical needs. Simultaneously, find your community. Connecting with other parents who have walked this path provides “social capital”—advice on which programs work, which grants are available, and how to navigate the system—which can save you thousands of dollars and hours of stress.

4. Do I need to be wealthy to set up a Special Needs Trust? This is one of the most common myths. You do not need a large sum of cash to start. Many families fund a Special Needs Trust (SNT) using life insurance policies. This ensures that even if you don’t have millions in the bank today, your child will have a dedicated pool of resources to provide for their needs without disqualifying them from essential government benefits like SSI or Medicaid.

5. Why is a “Care Plan” or “Playbook” considered a financial tool? A Care Plan (or Letter of Intent) is a financial safeguard because it reduces the “mental load” and prevents costly mistakes. It outlines exactly how your child’s life should be managed—from medical routines to social preferences. Without this “manual,” a future guardian might spend thousands on trial-and-error care. It ensures your financial resources are used exactly as you intended.

6. How do ABLE Accounts differ from Special Needs Trusts? An ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for individuals with disabilities that began before age 26. It is often used for shorter-term goals or “spending money” because it is easily accessible. A Special Needs Trust is a more robust legal structure designed for long-term protection, larger assets (like an inheritance), and professional management. Most families benefit from using both in tandem.

7. Why do many parents leave public benefits “on the table”? Many families miss out on benefits like SSI (Supplemental Security Income), Medicaid waivers, or state-specific grants because the application process is intentionally complex and exhausting. Burnout makes it difficult to navigate the paperwork. However, these programs can often cover thousands of dollars in home modifications or respite care that families would otherwise pay for out-of-pocket.

8. What does “financial clarity” feel like for a special needs family? Financial clarity is the transition from “survival mode” to “stability.” It feels like being able to breathe again. It doesn’t mean you have unlimited money; it means you have a plan. When you know where the money is coming from for the next therapy and how the future is protected, you can stop “panic-googling” at 2:00 AM and start enjoying the happy moments with your child today.

The post 151. Why Special Needs Parents Are Financially Burned Out — And What to Do About It appeared first on Water Prairie.

In this episode, Tonya breaks down a case study of a twice-exceptional (2e) student—someone who is academically gifted but struggling with the biological hurdles of ADHD.

The Water Prairie Chronicles Podcast airs new episodes every Friday!

Find the full directory at waterprairie.com/listen.

In this episode of the Water Prairie Chronicles, I’m walking you through a real IEP case study: a 9th-grade honors student with ADHD whose IEP was legally compliant… and completely inadequate.

His teacher refused to acknowledge his disability. The school’s response left him sitting in a media center during math class for weeks — until he was quietly dropped from the course entirely. He lost a full year of math.

The IEP checked every box. It just didn’t do its job.

In this episode, I break down exactly what went wrong — and what was missing — so you can spot the same red flags in your child’s IEP before it costs them, too.

What we cover:

If something in your child’s IEP doesn’t feel right, trust that instinct. Book a free coaching consultation: https://waterprairie.com/iepcoach

Watch the full 4-part video series breaking down this IEP:

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/

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 26, 2026)

Full Transcript of Episode 150:

Tonya: Welcome to the Water Prairie Chronicles, the podcast for parents of children with disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here. This week I’ve been working on a video series analyzing a ninth-grade IEP. It’s a document that looks, on the surface, like a good IEP. It has honors classes, it has polite teacher comments, and it has goals for organization.

But if you’ve been following that series, you know how the story ends. You know that shortly after that IEP meeting, back in 2017, the student who had been an honors math student all through middle school sat down in a ninth-grade math class where his teacher refused to provide his accommodations. She told the team plainly that she didn’t believe “ADHD was a thing.”

The school’s response wasn’t to correct her, it was to move him to an online self-monitored math class. And if you know anything about ADHD, you already know how that went. He ended up spending that class period in the media center, not learning, not supported, just waiting out the hour. Day after day, six weeks into the school year, the teacher formally dropped him from the class.

He lost an entire year of math. And you also know the vindication that in 12th grade, he walked into a college level math class with no IEP, and came out with an A.

Today I’m going behind the scenes of that case study. I’m talking about the red flags we missed, the high achiever trap, and why I am so personally invested in this story. Because today I am pulling back the curtain.

That student – he wasn’t just a client – he was my son.

I want to start with the strength section of that 2017 IEP, because I think it tells you everything you need to know about why this plan failed. The words the team used to describe my son were “polite,” “respectful,” “kind.” And if you’re a parent, you know how good it feels to hear those words at a meeting.

After years of advocating, after fighting for every accommodation. After wondering if the school even sees your child as a whole person. Having them say something kind feels like a win. But I want you to notice what those words don’t tell you. They don’t tell you what happens when the student is overwhelmed.

They don’t tell you what his face looks like when he’s hit his processing limit and still has three hours left in the school day. They don’t tell you what he needs when his brain has run out of fuel.

Because my son has ADHD, and as we discovered after that ninth-grade year, he also has narcolepsy. He was literally fighting his own biology every single day to stay awake and focused in high-level honors classes. Not some of the time, every single day. I didn’t know it, the school didn’t know it, but that was the reality of his life.

And because he wasn’t acting out, because he was polite and kind and didn’t cause a scene, the school interpreted his struggle as a choice. As a lack of motivation. As a student who was smart enough but just wasn’t applying himself. I hear this all the time from families that I work with. I call it the high achiever trap, and it works like this.

When a student is bright, the school assumes the academic placement isn’t the problem. They assume the student can do the work, and so instead of asking, “What does the student need to access the curriculum?” They ask, “Why isn’t the student applying himself?” Those are two completely different questions, and they lead to two completely different IEPs.

Here’s what I know now that I didn’t have the language for in 2017. Intelligence and executive function are not the same thing. You can have a brilliant mind and still struggle to find your shoes in the morning. You can understand complex math and still be unable to start the problem set. You can have excellent verbal skills and still fall apart trying to organize a five-subject notebook.

And if your child’s IEP only looks at grades and test scores and never asks, “How is the student managing the cognitive load of just showing up?” That IEP is missing the point.

Now let me talk about the red flags. The things I can see clearly now that I couldn’t see in that meeting. Partly because I didn’t yet have the coaching framework that I have today. And partly because when it’s your own child, the weight of those meetings makes it harder to think like a coach.

Red flag number one is assistive technology. In this IEP right there in the section where they ask, does this child need assistive technology? There’s a box that they’re going to mark, and in this IEP, the team checked, “no.”

 I want to be honest with you about something. At the time, I didn’t push back on that because I had the same bias the team had. I thought assistive technology was for students who couldn’t read or write, or for those with a visual impairment.

I didn’t understand yet that, for a student with significant processing fatigue – a student already exhausted from fighting narcolepsy while sitting in honors classes – a laptop isn’t a luxury. It’s an energy saver. Think about it this way. Every task your child does at school has a cost.

Writing something down costs energy. Finding the right notebook costs energy. Remembering to check a planner costs energy. Keeping track of loose papers costs energy. For a student whose brain is already working overtime just to stay present, those costs add up fast. Now imagine that same student, but every logistical task is handled by technology.

Speech-to-text takes care of written output. A digital organizer sends automatic reminders. A smart pen records the lesson so he can focus on understanding instead of transcribing. What would’ve been left over? The actual thinking, the math, the history, the ideas that were always there.

Instead, we spent all of that cognitive bandwidth on the administrative task of being a student, and there was nothing left for the learning. This is what I mean when I talk about the cost of doing the work, and this is the lens that separates a Master IEP Coach® approach from what most teams bring to the table. We don’t just ask, “Can the student do the work?”

We ask, “What is the cost of doing the work?” And if the cost is an anxiety attack at 9:00 PM every night after a full day of white knuckling through classes on sheer willpower, the IEP is failing. Full stop, no matter what the grades say. The most heartbreaking part of the story started for us in ninth grade, and the ripple effect lasted for years.

My son’s math teacher refused to provide his accommodations. She said directly that she didn’t believe “ADHD was a thing.” Those were her exact words. When we brought this to the team, the school’s solution wasn’t to hold her accountable. It was to move him to an online self-monitored math class.

For a student with ADHD and narcolepsy, someone who needed external structure, reminders, and a human in the room, unsupervised, online learning wasn’t support. It was a different way of failing him. He spent that period sitting in the media center, not learning, not progressing, just there, losing an entire year of math content while his classmates moved on.

Six weeks in, the teacher formally dropped him from the class. And that loss followed him into 10th and 11th grade, where the school pointed to the gap and said he wasn’t a math student, that he needed a lower track. As a parent, you start to believe them. You think, maybe I’m pushing too hard. Maybe I’m seeing something that isn’t there, but my gut told me they were wrong.

We paid for private special education for part of the day in 10th grade. I drove him half an hour to class, waited while he was in school, and drove him half an hour back to his high school for his afterschool activities. In 11th grade, his local school assigned him to a remedial math class. Then came 12th grade.

He enrolled in Quantitative Literacy at our local community college. No, IEP. A different environment. Different expectations about what learning could look like, and he got an A. I want you to sit with that for a minute. An A in a college-level math class, for a student who had been told by an official team reviewing an official government document that he was not a math student. That A didn’t just prove he could do the work, it proved he had always been able to do the work.

It shone a spotlight on every single failure of that ninth-grade IEP. It proved that the ceiling wasn’t his, the ceiling was theirs. So what does this mean for you? Three things, and I want you to write these down. Number one, trust your gut. And I want to be specific about what that means because trust your gut can sound like a vague encouragement.

What I mean is. If you feel like the school is mislabeling your child’s “can’t” as “won’t.” If you feel like the description in the IEP doesn’t match the child that you know at home, you’re probably right. In that 2017 IEP, I had actually asked the team to document in the official record that my son’s anxiety was being misunderstood as a lack of effort.

I knew something was wrong even without the full coaching framework that I have now. I want you to trust that knowledge. Document it. Put it in writing. You have every right to have your concerns reflected in the document. And number two, write down, don’t settle for compliance. I want to say this directly because I think sometimes parents hear that an IEP is “legal” or “compliant” and feel like it means it’s working.

This IEP for my son was compliant. It was finished on time. It met every state standard, and it was a failure. Compliance is the floor, not the goal. Your child deserves an IEP that actually solves the problem. And number three, write down. Get an expert in your corner. I’m sharing this story, this deeply personal story, because I don’t want you to spend two years in remedial classes waiting for someone to finally see your child’s potential.

I don’t want you to spend money on private placements that your child’s school should have been providing. And I don’t want you to sit in a meeting and doubt yourself when your gut is telling you the truth. I became a Master IEP Coach® because of this story. Because I lived it as a mother before I ever lived it as a professional.

And that means when I sit down with you to look at your child’s IEP, I’m not just bringing you a framework. I’m bringing you the hard-won knowledge of someone who has been exactly where you are on both sides of the table. You don’t have to figure this out on your own. You were never supposed to.

If you recognized your child and my son’s story, or if you’ve been sitting with a nagging feeling that something in your child’s IEP just isn’t right, I want you to take one step today. Book a free coaching consultation with me at https://waterprairie.com/iepcoach. There’s no cost to it for you. 20 minutes we’ll spend together.

That link’s in the show notes. We’ll look at your child’s document together, and I’ll help you see exactly what the team is seeing and what they may be missing.

If you’ve been watching the video series on YouTube, I appreciate you going on this journey with me. Those four videos covered the high achiever trap, the assistive technology question, the difference between lowering the bar and strengthening the ladder, and how to turn your parent intuition into IEP documentation.

All four of them are linked in the show notes in case you’ve missed any of them. And if someone shared this episode with you and you’re new to Water Prairie, welcome to the community. This is a space for parents who are done being told that their child’s struggle is their child’s fault. I’m glad you found us.

Until next time, keep advocating and collaborating with your child’s IEP team. Your child is counting on you, and you’re more equipped than you know. I’ll see you next time.

The post 150. The IEP That Almost Destroyed an Honors Student appeared first on Water Prairie.