Practical Access Podcast

S8 E4: A Mom's Story with Kathleen Williams

August 18, 2022 Eric Imperiale Season 8 Episode 5
Practical Access Podcast
S8 E4: A Mom's Story with Kathleen Williams
Show Notes Transcript

Today we have a special treat for you! Our hosts, Drs. Dieker and Hines get to sit down with a friend of the show and mom, Kathleen Williams. Kathleen is not only a part of the UCF Exceptional Education family but also a mother to a son with special needs. In this episode, she shares her experiences as a mother to a social and lovable son with Autism and ADHD. She shares his journey from growing up and supporting him through therapy, his unique experiences, to being able to move out on his own. You’ll want to tune in to this episode and learn more about her story as a mom.

Don't forget we love to hear from our listeners! If you have any questions, feel free to reach out. We look forward to receiving your questions on our Google Phone (407) 900- 9305, Facebook (Practical Access), Twitter (@AccessPractical), or Instagram (@Practical_Access).

Lisa Dieker:

Welcome to Practical Access. I'm Lisa Dieker.

Rebecca Hines:

And I'm Rebecca Hines. And, Lisa, the fun of this episode is that we're focusing on a mom. And sometimes moms just need to be heard. Who do we have today?

Lisa Dieker:

Well, we this is a definite friend, friend for a long time, which we always laugh that most of our podcast guests are friends. But this is a friend who really has had a vision for her child with unique abilities. And we'll let her tell you about that. And her name is Kathleen Williams, and about her son moving out, which I think is something that we all like to hear. So welcome,

Kathleen Williams:

Thanks. Thanks for having me.

Lisa Dieker:

Well, thanks. Well, can you give us just a little bit of start of maybe a little bit about your wonderful son, and a little background about him as we talk about his journey of growing up and moving out?

Kathleen Williams:

Well, my son is CJ, he's getting ready to turn 27 if you can believe that. And he's been diagnosed with autism and ADHD. And he's the most social autistic person you will ever meet. But you can attest to. And he has recently moved out, he moved out two weeks exactly before the shutdown of COVID. And he moved into a group home, there's a total of six young men who live in this

Lisa Dieker:

So can you tell us when CJ was I think I met you when he was about eight? Probably it makes me seem old. But But when he was eight, what set the trajectory do you think, to get CJ where he is today? What was that pathway and maybe, you know, at the time you didn't even know you were doing about but what are some of those things when he was young that you think led you to where you

Kathleen Williams:

Well, we did you know all the therapies, lots of occupational therapy, lots of sensory things, he had lots of sensory issues, he still does. But we managed through the therapies to he's able to get a hair cut, now he's able to have his teeth brushed. Now, he's still not able to get a dental cleaning without anesthesia. But he's able to do he's able to eat all sorts of foods that We did lots and lots of behavioral therapy, we did, we did switch to some higher level medications to really make a difference in his life to really stabilize him so there wasn't so many ups and downs throughout the day. The school played a big part, we had some really great teachers in, in the schools, and they just made all the difference in the world for us.

Rebecca Hines:

You know, Kathleen, you and I have talked so many times over the years, about you know about living opportunities and independent living for you know, for our kids and people hear sometimes the term group home and it doesn't, it doesn't feel fun. You know, and our topic is, summer fun. But Lisa and I know you well enough to know that whatever situation you have crafted or found for him, there's got to be fun there or you wouldn't have him there. So can you tell us a little bit about kind of that experience of finding a place where you felt like your son was living independently, rather than being just cared for?

Kathleen Williams:

Yes, he lives in a home in a regular neighborhood, a neighborhood like you and I would live in it's literally five minutes from my house. And it's just a regular house. There's six guys that live there. They do have someone there 24/7 so they're not alone. But you would think he was living in a frat house not a you know, people think group home and they think, Oh, poor thing.

Rebecca Hines:

Yeah, I love that. And I know that was always you know A vision that was that we wanted for our family members. How did you how did you make sure you were finding a place like this for him? Is it? Is it that that the staff, you know that work there you You already knew this was the kind of place he was going to have have available? Or did you hand pick people to work there? Can you give us just an idea of how do we create that? How do we make sure

Kathleen Williams:

We were extra blessed because the place where he goes for his day program, had the opportunity to start a group home. And so I already knew the people that were involved, I already knew the people that were running it, we have similar goals and values and things that we want for, in my case, CJ, but in their case, all the young men who live in the house, so I knew going in who

Lisa Dieker:

And I love I just want to ask because I think our listeners will enjoy what happens when you try to bring him for a visit back to your house.

Kathleen Williams:

Well, it depends on what we're doing. If he's just coming back for a short period of time, he's just agitated, but he tolerates us. He does get on my TV and go to my DVR settings and set recordings for every WWE event that's coming up in the next week. So I get recordings on my DVR after he's been here of SummerSlam and Monday Night Raw. If I tried to make him spend the night,

Lisa Dieker:

And again, I think that's what I want our listeners to realize is that you're having fun because you see as independence, but he's having fun too. And, and I know there was a journey, I'm going to ask just a little bit of a backward part of the journey because one of the other things I think you mentioned teachers and all of that therapy, but literally CJ was very included, can you

Kathleen Williams:

He was very, very blessed. We had a wonderful teacher at high school. And she helped us paved the way with inclusion. I really pushed the issue and really wanted him to be included with the athletes. He's very athletic. He loves sports. So in our case, it was the athletes but he got to help with the baseball team. He would go to practice. He would help around the field. He would

Lisa Dieker:

And I think to do that they had to change like the state law for eligibility and all kinds of things.

Kathleen Williams:

No. They got him in that was one of the reasons he had to play by a certain date was that there's certain rules about eligibility, but he had to wear a mouthguard. He had to wear pads he had to wear a uniform, and I still talked about the poor guy that had to stuffed him into his football pants

Lisa Dieker:

but but I think you know, your expectation for him all along is every opportunity no matter his needs, you would find a way if he wanted to do it to celebrate it and I think that's not only fun But but fun for our listeners. So what avenue I think that wasn't that fun. But I wanted to just follow up with kind of how that funding structure. I know you and I talked a few times, but how are you able to support him in that group home setting, and any advice for finding those pathways for funding, and remember our listeners around the globe. So I know there's some pathways in Florida, but it's

Kathleen Williams:

He does get Social Security, which people with disabilities are eligible for when they turn 18. There's some people who get it earlier due to financial need, but you don't have to prove financial need when they're 18. You do have to prove that they have a permanent disability. And you have to go through a process with the social security office. We also get what's called Med

Rebecca Hines:

And, you know, Kathleen, you and I, as you know, proponents of inclusion. And you just really well explained how the school helped set CJ up for this success later. And he's he's now living in a group home. But, you know, I think as an adult, inclusion becomes having the confidence to be a part of the general community, which CJ certainly does. And our our, our listeners don't what would you say is step one, from a practical level, let's say I do have my financing in order, you know, getting the social security, but I'm really looking for a situation like CJ has, what would you say would be the first step for someone to help their student move out and have the kind of fun he does.

Kathleen Williams:

The first step, if you're trying to move out and you have your funding is to talk to your support coordinator. The support coordinators are the people that work with in different in different states, I'm sure it might have a different name. But in Florida, it's called the Support Coordinator. And they help you facilitate your Med waiver money. And they actually have the

Rebecca Hines:

What did you personally do? What was your first step? What beyond the governmental part? What is the parent? What was your first step?

Kathleen Williams:

There's just lots of networking among the parents. That's really how you get information is from other parents. That's how you find out about good group homes, bad group homes. That's how you get the most of your information. Like I said, we had the funding and if you do have funding, then you do have a support coordinator. If you are on the waitlist you can contact in

Rebecca Hines:

In finding a support network. Also, I do think that's key is finding a parent group locally so you can start exploring this is a great tip.

Lisa Dieker:

Well, so as we wrap up my last question into

Kathleen Williams:

We have gone on several cruises and vacations and he has not come which makes him as happy as it makes us. He hated being dragged places and would hate a cruise ship as much as I love one. So that's been just being able to not worry about when are his meds due? What time do we need to be home? What time does his caretaker have to leave? Is the caretaker going to show up? Just

Lisa Dieker:

That's a great final thought. Well, thank you, Kathleen, for not only sharing your personal story, but your advice to other parents, which is so important. So please, if you have questions, send us a question on our Facebook page at practical access, or send us a Tweet at Access practical. Thank you again, Kathleen and tell CJ thank you for letting us share his story too

Rebecca Hines:

Tell him I said hi.

Kathleen Williams:

Thanks so much.

Lisa Dieker:

Thank you