In this episode, Risha discusses intellectual disability with Delia Lewis-Foshee, an educator with Sapulpa Public Schools.
All of this and more in this episode of Risha Talks.
TRANSCRIPTS:
Today I had the opportunity to talk with a close friend of mine about something that many of you may not know about, but then there are also many parents out there who are dealing with this and need help. Intellectual disability. Listen as she shares her experience.
Hello, everybody. Today, I have with me Dee Lewis, who is an educator at Sapulpa Public Schools. And we want to talk about parents and parents with children who have different types of learning disabilities or intellectual disabilities. Indeed that’s really where I want to start; what is the appropriate word for it? I think people struggle with that because they don’t want to say the wrong thing.
Well, I think it’s intellectual disability. I mean, there are so many terminologies, but I think it’s best that you address them as the person they are. They do have difficulties, they do have a handicap, but they do have a name. And you don’t want that title to overshadow of who they are.
Right, but I think, for a lot of people, they find it difficult, and so, I’ve seen a lot of people with different disabilities that aren’t treated with the humanity that they deserve simply because people don’t know what to say. They don’t know how to handle it. And I know this is personal for you because your daughter Ashley has an intellectual disability. Can you talk a little bit about that?
Yes, my daughter was born with Down syndrome, and I was a young parent, and it was very hard to accept because you don’t know what to do. And so, I just learned as a grown-up that you had to accept lemons and make lemonade. And so I just raised her like anybody else. And then she would tell you that she does not have Down syndrome. She says she has “up” syndrome.
I love that.
And so, therefore, it’s just a change in the growth mindset. Yes, she may have a disability, but it just makes you even more special. And you just have to work harder. And she will tell you that. And so really it’s just when they grow up, and you just train that mindset that they could be somebody.
Well, what type of struggles because I remember we’ve known each other a long time. And I remember that you had some struggles just finding resources and even understanding more about down syndrome. And what– not only what you went through, but what your child will go through. So, what resources did you find? How did you get through it? Dig in a little bit so people can understand.
I might get emotional.
[LAUGHING]
I get it.
Now, when it first started, you’re devastated. And you want a perfect child. What is a perfect child, really? Being a young parent, they give you a whole bunch of resources when you’re in a hospital, and they tell you, “Hey, read this and do this.” But really, you’re not in the mood to read all that. So, really it’s just a journey that you take, and then you learn from it.
It’s really having a good support system. I had really good friends. Thank you. I had– my parents was really good support system. But most of all is just really talking to people, helping you navigate what you need to do. It’s very important that you have prevention early. The hospital is called SoonerCare. If you can’t afford insurance, you have SoonerCare. And there is people who come out to the home and help them develop and meet those milestones when they’re young.
So I had a really good start from St. Francis. They helped me with physical therapy, how to feed her, how to give her more muscle support. And it was just great. And then when she went to school-age not because I work for Sapulpa Public Schools, but they were fantastic. From her preschool, from her elementary, from her junior high and high school, they were wonderful. They were very trained special Ed teachers that really motivate them and push her. And she could read at a third-grade level.
So I mean, it’s really about how much you put into it and helping the teachers in your district too.
Great.
It takes a village.
Now, I know Ashley, and she has a lot of personality. I always love talking to her. But what type of struggles as she got older did she deal within the school system?
Well, she wanted to be part of the peers. But you have to be careful because we did so well making her fit in and be one of us. But then when you go over there, people are not that tolerant.
Right, exactly.
They are like, “OK, we don’t like that she looks different, she acts different, we can’t understand her.” She just wanted to be included.
Right.
I remember when we go to the homecoming parades, and she will see the beautiful girls in their beautiful gowns waving, and they were homecoming queens, she wanted to leave. She’s like, “I won’t be homecoming queen; oh, my God!” She didn’t like that. She wanted to be a part of that. She wants to be immersed in that. So I just think it just needs to have more social things at the high school that the kids can be a part of, besides Special Olympics.
They are part of Special Olympics. They do a whole to-do like, “Oh, we go to Special Olympics,” but they want to be a part of being a homecoming queen, being a cheerleader, and just being part of their peers.
Right, I can only imagine. And it’s crazy that you bring it up because I never ever thought about that. And of course, we went to school with kids with special needs, and you’re right, there was really nothing for them to engage in. So–
Except Special Olympics.
That’s true. So what have been some of the things, or what’s– let me rephrase this. What advice can you give maybe to other parents of– that are going through this journey, maybe they just started it, maybe their kids are school age. But what have you learned over the years that will be helpful to another parent?
Well, there’s so many Risha. I just know that in the beginning, you have to ask questions. You have to educate yourself. Ask for help. Don’t think that you’re by yourself. You need a mental break sometimes, and then recharge and go back. But you have to– you cannot label your child and say, hey, they can’t do it. It’s a hard journey. You need treat them like everybody else. It’s not– they’re not going to do the same milestones as everybody, but you can’t compare them. Don’t compare your child to somebody else’s excelling.
So talk to your teachers, talk to your resources. There’s so many resources out there for kids who are young, and that will come to the home and help you meet those milestones. And just, you’re going to make mistakes, don’t be hard on yourself.
And that’s true in every area of life. What were some of the conversations that you had to have with Ashley along the way regarding the experiences that she had? Because I’m sure, there were difficult conversations.
I’ll just tell you Ashley’s a little bit different. Ashley, she has a disability but at the same time; she needs a lot of support. Does that makes sense? You have to watch her closely because she can get– taken advantage of real quickly.
Right, right.
She wants love, she wants romance, but you have to be careful with that. She wants to go to college.
Yeah, are you OK?
I just think I don’t know, I feel like if I did it all over again, I think Ashley would’ve been better, but I was young and just trying to find the avenue. I think if I had to do it all over again, Ashley would be– will excel better than she is now, because how well–
Dee, Ashley is an amazing person.
Yeah.
She’s an amazing person. I mean, any conversation– she’s not shy. I mean, people may have trouble dealing with her, but she has no trouble dealing with people in a social circle. I mean, there are people who don’t have the difficulties that she has that can’t operate around other people Ashley does not. You did an amazing job.
Yeah, but at the same time I like– Ashley, maybe I put her too much in that social skill because when that means to come home, that’s another story.
She likes to party.
She’ll shake it and twerk. But I say this, to go back despite that the– besides Special Olympics. I will say that Sapulpa peers, her classmates, who aren’t special that really immersed her because she was part of the prom. She was in the limousine with– not with people who were like her, but people who are popular at the school. And so when I had to chaperone her at the prom, there was this big huge crowd in the middle, and they were surrounded like “what’s this commotion?” Why I had to break to see, and my daughter was twerking it and get it out.
[LAUGHING]
That sounds like Ashley.
Yes. And so– what’s so funny about it, they were protecting her, and they didn’t want me to see it. It wasn’t like they were making fun of her like she was part of the party.
Yeah, I do. But you know from what I know she likes to party.
She does.
There is nothing wrong with it. I’m glad that she had a support system of friends because I can imagine how important that is. I know how important it is just for our group. So to already feel like you’re on the outside looking in that probably was a really great experience for her.
But I think the problem is that I have is after you had that structured environment after you had that school, then they graduate then what? And then so I think that’s what we’re dealing– I’m dealing with that as a parent, as a transition of adulthood. There’s not very much programs out there unless you have a lot of money, or you have a great support system that can stay home with your child who needs the– there’s resources in Tulsa like Greenleaf, and I think those places in Jenks, and Broken Arrow, they’re great. But when you live in a small town, things like that there’s not very many resources for adult people with disabilities.
So where should somebody start? If my child is transitioning into adulthood, they finish school, where would I go?
Well, you need to start early. I would start as early as probably middle school getting that paperwork done. Like OK, setting those IEP goals. Like what’s going to happen next. Can you tell me–
What’s IEP? Hold on. What’s IEP?
IEP is an Individualized Educational Plan. And if it’s for people who are intellectual disabled or handicapped. So those are goals that need to set. Yes, they need to read, yes, they need to write, but the main goal is can they function in real life.
Right.
That’s the main goal. What can I do that they can be really independent? What type of resources are there for them? Because you still have to work. The school is not there to keep your child. So you’re an adult, where do they go? Where can you transition, and what type of transportation can they get? What time is that? Because that’s the trouble that I’m having right now.
So what have you found? Where is Ashley now?
Ashley was at adult daycare called Oasis and Discovery, but that has shut down. So the only place is Show, in Sapulpa, which is a really good program, but the problem is the time-frame. It closes at 4:30.
Oh, wow.
I don’t get off of work until 5 or something like that to go pick your– but you have to pay extra for that. Also, you need to think about a lot of these facilities have a time frame. It’s either from 7 to 4, or 7 to 3. Parents don’t off at that time.
Exactly.
And they can’t drive themselves. So, therefore, it’s transportation. I think there’s more resources in Tulsa. But in your small communities, there are not.
Wow. So it sounds like somebody needs to get something started?
Yeah, and we have talked to some people…Claudia Bartlett. I hope she doesn’t mind me mentioning her name, is really a good resource. She’s that– she helps a lot with the school district. And we have talked to her. And we’re trying to work some things out and kind of start something up here in Creek County because that’s what the struggle that’s going on. The transitioning of not being like a nursing home, not being like a daycare, but they are thriving. They’re doing something positive.
Right.
And that you can have that frame that your kids are safe. But it’s not really a lot of facilities out there like that.
Dee, thank you so much for sharing a really personal part of your life with us, but I think it’s going to help so many people that deal with this every day, and they have no idea of what they should be doing. So thank you for being open enough to do this.
Just because they have a disability does not make them less of a person.
That’s a great place to end. Thanks, Dee.
Parenting is hard enough for many of you, but when you add intellectual disabilities into it, it becomes even more challenging. I hope through this episode that you felt seen. I hope that you gathered many resources, and I’d love for you to continue the conversation online. This is Risha Grant, with 2 Works for You.
