Episode #105: Parenting a Child with Epilepsy and Cerebral Palsy
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Show Notes:
Advocating for inclusion and understanding is essential when you’re parenting a child with epilepsy and cerebral palsy.
Join us as we follow Cece’s inspiring story of resilience and determination. Learn about the challenges and triumphs of parenting a child with epilepsy and cerebral palsy. Discover practical tips, valuable resources, and the emotional impact of this journey.
This video features an exclusive interview with Aaron DeVries, the founder of The Inclusive Dad, who shares his personal experiences and insights.
Don’t miss this powerful and uplifting story that will leave you inspired and empowered.
Connect with Aaron:
- 💻Website: https://theinclusivedad.com/
- 🎤TEDxUSD: Unlocking Inclusion for People with Disabilities:
- 🎤TEDxHoracePark: The Power of Inclusion:
Epilepsy Foundation of Minnesota: https://www.epilepsyfoundationmn.org/
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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/
Aaron DeVries is the founder of The Inclusive Dad, an organization whose mission is “Building stronger communities through inclusion.” His commitment to “Inclusion” is evidenced by the tattoo on his left arm. He is the father of two young adults. He was thrust into the world of disabilities and special education after his daughter was diagnosed with epilepsy and cerebral palsy at an early age. He has spent over 15 years advocating for inclusion for his daughter in school and the community. He has served on various boards and committees of disability related organizations. He has given two TEDx talks entitled “The Power of Inclusion” and “Unlocking Inclusion for People with Disabilities.”
Episode #105: Parenting a Child with Epilepsy and Cerebral Palsy
Advocating for inclusion and understanding is essential when you’re parenting a child with epilepsy and cerebral palsy.
(Recorded April 15, 2024)
Full Transcript of Interview:
Aaron: It’s not the most fun advocating for your child, but I always, it’s my daughter. If I notice it, I’m going to ask a question. It’s just going to happen.
Tonya: What does it mean to parent a child with disabilities? How do you balance the emotional rollercoaster with the relentless pursuit of inclusion? Welcome to the Water Prairie Chronicles, a podcast for special needs parents.
I’m your host, Tonya Wollum, and I’m glad you’re here today. I’m joined by Aaron DeVries, the founder of The Inclusive Dad. Aaron is a passionate advocate for inclusion and the father of a young adult with disabilities. In this episode, we’ll delve into his experiences, parenting a child with epilepsy and cerebral palsy, his journey advocating for inclusion and his insights into the emotional impact of raising a child with special needs.
Um, I have a 20, I think, yeah, she’s a 22 year old daughter, her name is Cecilia, we call her Cece. Um, at three months old, she was diagnosed with, um, epilepsy, um, her aunts who are nurses noticed her having seizures, took her to the Mayo Clinic, which is close to where we live in Minnesota, and she was diagnosed with, um, epilepsy.
Um, subsequent to that, she was diagnosed with cerebral palsy. Um, so that’s, and so she’s now 22. Like I said, um, she’s been on seizure medication since that time, um, taking them every day, um, and she uses a wheelchair to get around, to navigate the world, so that’s just a brief.
Aaron’s daughter, Cece, was diagnosed with epilepsy and cerebral palsy at just three months old.
The unexpected news brought a wave of emotions and challenges for Aaron and his family. Even though they weren’t first time parents, Aaron and his wife were unaware of Cece’s seizures until her aunts, who were nurses, noticed the unusual behavior.
Her mom and I didn’t notice anything, but we went to a Christmas, um, that, she was born in October and went to Christmas in December.
Um, she has two aunts who were nurses at Mayo Clinic and noticed she was like staring off to the side. Um, so they noticed that, um, the behavior that she was exhibiting. And then we just took her in to get checked out and subsequently, you know, had all the tests done, um, EEGs and stuff, which showed that, um, she was having seizures.
So we, we personally didn’t notice anything. It was her aunts who had noticed it and led us down that path of getting it diagnosed.
As Cece grew older, Aaron faced the challenge of advocating for her inclusion in general education classrooms. Despite initial setbacks, he persisted in ensuring she received the appropriate support and resources
In the IEP, she qualifies as like severely multiply impaired, I think is the language ’cause she meets it under tons of categories. Um, so, so they, you know, they recommended she go to the segregated, um, self contained classroom across town. Um, we agreed to it because, I mean, that’s, we didn’t know any better subsequently found out about. And then after that, try to get her back into the general education, a hundred percent, which, um, other parents probably know this too.
Once you’re kind of in the special education segregated path, it’s super hard to get back. At least our experience was, it’s hard to get back into the general ed. So there seemed to be hoops that were there that aren’t there if you’re just in general ed. Like you have to prove stuff. More stuff to get back in than just whatever.
So so that was kind of the path we took. By the time she got into high school, I mean, she was, I think, maybe 1 or 2 periods she was not in general education. Otherwise, for the most part, she was in the general education class. So that’s kind of the path that ended up happening for us.
To accommodate Cece’s needs, the school provided modified curriculum and one on one support, ensuring she could participate fully in the classroom.
I mean, as long as I can remember, she had a one to one pair with her. A lot of it was to do with the seizure part of it, just to like be there and be able to watch for the seizures. Um, being able to administer the meds if she needed it, because that’s the piece with the epilepsy, the seizure part is she also, in addition to the IEP, had a, like a health plan, a seizure plan in place.
So, um, she took her noon meds at school. So they, I mean, you have to have the paperwork in place to go to the nurse’s office. Get the meds. Them to administer like the, you know, the rescue medication if she’s having a grand mal. So every year we would have the Epilepsy Foundation of Minnesota would come in and do training with the nurse and the school staff just to get everybody on the same page about, you know, this is standard.
You know, seizure first aid and then like, I mean, this is what Cece how hers presents. So, you know, this happens, you need to follow this procedure and that kind of thing. So there’s in addition to like the IEP part of it, like I said, there’s also is the seizure pieces that we had to have in place to make sure she was safe at school.
Parenting a child with special needs can be emotionally demanding. Listen as Aaron shares his experiences navigating the ups and downs of this journey.
I didn’t remember seeing anybody with a disability growing up. Had no experience with it. So it was all like new stuff for me. You know, just trying to figure out what’s happening.
I mean, I kind of, my approach was, I mean, you know, she’s my daughter. And I mean, we’re just, I’m just going to do what I need to do to, you know, to, you know, support, keep her safe, support her, get her the help she needs. Um, that was kind of my approach to it. Um, so it was just a lot of, like you said though, we had two little kids.
Um, Cece always from when she was young, you know, wanted me to be, you know, like have her take care of her. So I kind of took more of the role of, I mean, I was working, um, my ex wife. She stayed home with the kids. So I mean, when I came home, I’d be, I would want to, you know, help her out, you know, and you know, take over the parenting thing to give her a break.
So it was a lot of, you know, spending a lot of time with Cece. Keeping her, um, you know, having fun with her. I mean, lots of doctor appointments we did right. The Mayo Clinic got that diagnosis, um, trying to figure out there was a period of time where, you know, you do all the testing, like genetic testing, all the testing to try to figure out.
Right.
What, what caused it? There was never, we never got an answer. Um, like I said, the pregnancy was normal. Um, the birth was a repeat C section. So no, I mean, everything was normal. So there was nothing to like pinpoint what happened. Um, the scans showed that she had, um, extra like water in places of her brain where it should have been tissue.
So, um, the scan can see that, but there’s, like I said, there’s never been, we never had a solid answer to what, you know, caused it, which, um, for me, I mean, it’s, I mean, we tried to figure it out, didn’t, and I just accepted that as like, you know, she’s, she is my daughter. She is who she is.
It’s important to note that connecting with other parents who have similar experiences can provide invaluable support and understanding.
She’s still in the transition program. Um, so when she turns 22 in October of this year, then she will be done.
As Cece prepares to transition from school, Aaron and his family are exploring various options for her future, including vocational rehabilitation and community based activities.
Currently, she goes to school for, I think, like an hour and a half a day, and then she goes and works at the library, um, like there, so she, she loves that.
Um, I think we’re hopefully maybe continue that and maybe find some other type of volunteering employment she can have in the community.
We didn’t discuss specific transition planning strategies in the interview. However, it’s important to consider the following steps for a child Cece’s age.
Develop a comprehensive plan outlining goals, services, and supports needed for successful transition.
Collaborate with educators, therapists, family members, and community providers to ensure a coordinated approach.
Research vocational training programs, job placement services, and supported employment opportunities.
Focus on developing daily living skills such as personal care, transportation, and budgeting.
Offer ongoing emotional support and guidance to help your child navigate the transition process.
This season, what I’ve been doing is asking each of my guests to share some advice for our listeners through a series of open ended statements that I’m going to give. So, um, so Aaron has agreed to, to play along with this with us.
So the first one is, the best advice I’ve ever been given as a parent of a child with a disability is…
The best advice I’ve ever been given as a parent of a child with a disability is take time to enjoy the little things. Um, I mean, with. Cece’s needs. I mean, it’s 24 seven. I’m helping her out, you know, daily living tests.
So just those moments she loves music. So those moments when we’re listening to music, she’s just singing her heart out and kind of everything disappears. Just take time to, you know, enjoy those moments, wherever they are for your child, where you can just kind of forget about the day to day stuff and just live in the moment.
Second one, I wish I had known this, or I wish I had known blank about epilepsy and cerebral palsy when my daughter was first diagnosed…
What I wish I would have known right away is that we weren’t alone. Um, there’s others, others going through similar things. I mentioned like the Epilepsy Foundation of Minnesota.
Um, for us, for our family, that was really awesome. Um, we got used to having to like, go to doctor appointments and explaining everything happening over and over again, or every, you know, telling the same story. It was nice just to have a place where you could show up and just be around other families, not have to explain the whole thing and just, you knew that everybody in the room was going through similar stuff.
So that was, you know, that was a big help to finally figure out like, hey, there’s other people doing this. We’re not doing it all by ourselves.
And then the last one is the most important thing I’ve learned about advocating for my child is…
The most important thing I’ve learned about advocating for my child is, I mean, sometimes it’s, I mean, it can be kind of uncomfortable.
Um, I have more than one story where, um, she was having seizures to the point of, I mean, I, I got, it got to be where I would come home from work, she was in the ER, I would walk to the door of the ER and they would just point to the room, didn’t even have to ask my name. Um, so I was, I was to a point where, you know, I was kind of desensitized to it.
So I was able to pay attention. Um, so there was one time when she was having a grand mal’s 90 minute seizure, where they got the medication, were going to put it into the IV line. And. The doctor said, well, we have to do it over let’s just, I think it was five minutes. We have to do it slowly. Otherwise it’s going to burn her veins.
Well, another time after that, we were there, they got the med, um, stuck it in the IV and just pushed the plunger. So I’m like, hold on a second. I’m like, what just happened? Cause like the last time this happened, you just did this. So somebody needs to explain to me what just happened. So, I mean, for me, I was like desensitized to the, stuff that was happening, I was able to pay attention.
So just sometimes, and that’s not comfortable because most doctors I’ve met, they don’t like being questioned. So sometimes it’s not the most fun advocating for your child, but I always, it’s my daughter. I mean, if I notice it, I’m going to ask a question. I mean, it’s just going to happen.
Before we finish, share with us how listeners can get in touch with you if they have any questions for you and um, anything that, that you’re working on right now that you want to share about.
If you want to get a hold of me, uh, go to my website, The Inclusive Dad, or you can use the QR code on the screen goes to my link tree with my social media and those things on there. So you can reach out to me that way. Um, currently I help parents one on one coaching through helping coach through the special education process.
Um, we’ve got a monthly membership as an option where there’s a couple of calls a month, um, that are included, um, like a question and answer one and another mastermind call just to, you know, have support for each other, walk each other down this journey. So that’s how you can reach out to me and how you can work with me.
Thank you for being here today. I appreciate you sharing about your life and, and Cece’s life. And I’m, I’m sure there are families who are going to benefit from hearing this.
Thank you. Thank you for having me.
I hope this conversation has provided you with valuable insight, support, and inspiration, and left you with a better understanding of parenting a child with epilepsy and cerebral palsy.
To stay connected and receive more resources, visit I encourage you to sign up for the Water Prairie newsletter at https://waterprairie.com/newsletter. You’ll get updates on upcoming episodes, exclusive content, and valuable information for parents of special needs children. Join me next time when I continue talking with Aaron about his work with The Inclusive Dad.
Together we can create a brighter future for our children and build a more inclusive world. I’ll see you next time.
