Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee

Grayson (21), Cerebral Palsy, Cumberland County

"After a certain point you say this is what we are. Let’s just be a family and let’s just live."

  • A Parent's Perspective
  • Posted on 10/22/2012

Grayson is 21.  He was born with a heart defect, which caused the brain injury. This means he was born with a typical brain, but the heart defect caused the brain abscesses. The brain abscesses left him with his disabilities. He makes noises, but he doesn’t talk. He’s very mobile, but he’s got slight cerebral palsy. He needs 24/7 care.  He doesn’t do a lot. He doesn’t clothe or change himself; he doesn’t feed himself unless it’s cut-up. He doesn’t do anything for himself, but he walks around and plays. You can tell what he wants because he will take your face and show you, but he’s full time care.

He was diagnosed when he was about 8 months old when he had brain surgery. Grayson’s situation was little bit different because we were fighting for his life. We were praying just let him live. We don’t care how he is. That being the case eased it for us a little bit because he shouldn’t even have lived. He had heart surgery and brain surgery before he was eight months old. We were just so glad that he lived; it was a miracle, so I guess we were just able to deal with it. Then again, it doesn’t all sink in at once. Doctors will tell you the worst, and then it usually doesn’t happen that way. They said he would never walk, he’ll never talk, and he’ll be a vegetable. He’s definitely not that, he’s everywhere. It comes in little pieces and you don’t get all the information at once, which is a good thing.

The thing is they don’t really know you just have to wait and find out at different stages. It’s like at every age there are different milestones, and when they don’t hit it you start thinking about it. After a while you get to the point where no more therapy is going to help them, and that’s kind of a nice point to get to; the point where you can just live. You’re not carrying him to this doctor or this therapist, and you’re not trying to fix him. After a certain point, you say, okay this is what we are. Let’s just be a family and let’s just live. It was kind of a neat feeling when we got to that point because I knew I did everything I could do. I can’t do anything else, this is what it is, so let’s just step back and enjoy it.

In the earlier years it was also very challenging because he was hyperactive. He was bouncing off the walls when he was a little guy, so that was very challenging. We’ve always had to have care helping with him. I can’t tell you the number of caretakers I’ve had, and still have. When he was young and little it was really easy to find a caretaker because he was a really pretty child, and so cute, and everybody wanted to keep him. It’s a little bit harder now that he’s an adult trying to find a caretaker that wants to take him to the bathroom, and do all the things because he’s a man now. That’s probably been our families number one challenge is finding caretakers. We have always had caretakers because we have another son, who’s 24 now, but when he was growing up he was very athletic and social, and we didn’t want to miss anything that he did.

We constantly had people coming in and helping us with Grayson. I didn’t work until seven years ago and then when everything kind of planed off I opened my store. I think we were very fortunate that we were able to afford care.  It was just finding that right person, but a lot of my friends had that challenge of trying to get help with services. I don’t get any services, I never have.  It would be nice to get some help. I pay about $300 a week for caretakers. I get no help at all. That’s the number one challenge for people with kids like Grayson because if we didn’t have a caretaker our other child would have been ignored. We wouldn’t have been able to follow him around and see him play baseball and do all the things we did. Because of the caretakers they’re close and Jordan had a very normal childhood. I think we were one of the lucky ones that we came out okay.  

The other most challenging thing was probably that it’s 24/7 and it’s constant care. If you’re not having to dress yourself, you’re having to dress him, you’re having to feed him, you’re having to potty him, and it’s like having a baby, but it’s been going on for 21 years. That’s challenging, as you get older. My husband and I are in our fifties, and that’s getting hard. I didn’t see that when I was in my thirties, but now that I’m in my fifties it’s very challenging. It’s challenging to think about who’s going to take care of him when we’re not here and when we’re not able to keep up with him? That’s a concern and a fear and a challenge that all parents have. The emotional stress is challenging. We’ve been very blessed because my husband and I share the responsibility. There are so many couples that have split up over having a child with a disability. That’s hard to balance, to have a normal child and then to have a child with a disability and to have a husband and then work too. The balancing is very hard. It’s just a little bit of added stress. It’s just hard not to scream sometimes. That’s why I did the store 7 years ago because Grayson doesn’t have as many needs now. He goes to school during the day. So, I thought, “You know, I’m going to do something relaxing and have fun.”

One thing that has been good is the way our family has come together. We’ve grown together and we’re closer than we’ve ever been. Our faith grew. We grew in our faith, and we grew in knowing that God is going to take care of him. We also grew in our relationship with each other, my husband and I did, because he can’t do it without me, and I can’t do it without him. We’ve got each other. We’re so close. We’ve been married 28 years. Our son had got the biggest heart. He’s this athletic, good-looking boy, but he’s so sensitive. You don’t see that until later in life, but you know it’s because he had a brother like Grayson. He’s so kind to any other person with a disability, and I think it’s made him a better person. It’s made all of us more compassionate and we have better hearts. Grayson has touched so many people’s lives. I could go on and about with stories about people that are in the special needs field now. They’ll all come back and say it’s because they knew Grayson. We could write a whole book on different ways that people have told us Grayson has touched their lives. He’s that kind of kid, so it’s all worth it.

When I had Jordan he hit all the milestones, like talking and walking and all of that stuff and you’re so excited. When Grayson hits a milestone you just can’t imagine how a mother feels. They love you unconditionally. He’s never mad at us. He doesn’t judge us, and he doesn’t judge anybody. He loves everybody. That’s the good thing about him. He doesn’t know how to be ugly. He doesn’t know to be unkind. When you do things for him and you see how far he’s come, it’s like I have a purpose. I feel like that’s my purpose is to make sure he’s healthy and happy and that he’s safe. I think that makes you feel really good about yourself. The good definitely outweighs the negative things. I think we’re one of the lucky ones.

This is Grayson’s last year in school. School had been great for him because Grayson’s very social. He gets very bored at home. He’s always had good teachers. Grayson has always loved all his teachers and peer tutors and everything, so school has been really good. The challenge is going to be when he graduates next year. We’ll be hunting day services. That’s going to be another chapter because he’s been in high school for so long.

There’s a day service called Hill Toppers. It’s residential too, but we’re not thinking that anytime soon. Hopefully he would go there. Some of the clients work. They also take them out in the community. It’s just a day program to be social. That’s the one we’re trying to get into, but they’re federally funded, so it depends on if there’s money. This challenge for me will probably be bigger for me next year than it’s ever been in my whole time with Grayson. It’s going to be the hardest time for us because he doesn’t want to just stay at home. He needs to get out and about, but if there’s no money I might have to pay for him to go to Hill Toppers. I have to get him into some kind of program. That’s probably where he’ll end up going. My husband’s on the board of Hill Toppers and I’m on the board of the ARC, so we stay really involved. We have really good support, which helps.  I think that’s so important. A lot of parents have never heard of the ARC, and I don’t know how they can do this without having a support group. You’ll meet Glenda Bond and she knows everything, and I don’t know what I would do without being able to pick up the phone and call my support group that has been through it and has kids that are older than me. I can help someone that’s got a child that’s younger. I think that’s really important, having a network, which I always have. I did that from the get go.

It is so much better to be in small community. Services might not be as good, but as far as the community knowing him and embracing him and everywhere we go people know Grayson. Everybody knows Grayson and knows that I’m his mom. You feel a lot more comfortable about it. When Grayson was born we lived in Williamsburg, VA. It was the place to be for early intervention. It’s a bigger town, and the early intervention was so much farther along than it was here. In the early years, he was there getting all that therapy, and all that intervention, and that entire parenting group. When we came here services weren’t nearly as good. I had to fight for everything. I was constantly fighting to get him more therapy because at the time we didn’t have the money. They would say he can have speech therapy, but he can’t have occupational therapy. I had to say, “Okay, I will call the state.” Then, I learned you’ve got to choose your battles, but I didn’t know that until later. After I learned I had to choose my battles I was a little more calm, and said okay we’ll trade out, and I worked with the teachers a little bit more. I wasn’t trying to be difficult I just wanted them to know that I knew my rights. I had come from Williamsburg, VA, where when he was 2 years old they were giving him all this therapy for free.  Someone even came to our house to do therapy for him. It was awesome.

I learned my rights more when I came to Tennessee. The Arc is a wealth of information.  I didn’t hesitate to call the state if I had a question. I learned from him being in the hospital and mistakes that we made with him that I’m his advocate. It took me a little while to learn that. I just trusted that the medicine they gave him was right, and it’s not. They made so many mistakes with him at Vanderbilt where he had the surgeries. They didn’t detect his heart defect, which caused the brain abscesses.  There were things I wish I has known and asked them about. I thought they knew because it’s a hospital. I learned from that experience that you don’t trust anybody, so then I became an advocate for Grayson. I would call the state and ask if it was right. I think parents trust people. This is all new to you. I think that’s a constant learning thing. Right now I’m going out into the school system and you’re always learning.

I think if we lived in a large city we wouldn’t take him out as much.  We take him to church; we take him everywhere we go. When he was younger he was so much wilder. He couldn’t sit out in church, so most people like us they just don’t go to church. They don’t have a choice. When he was younger a friend of mine in the church said “You know Grayson loves men, so lets have a men’s ministry.” They started a men’s ministry where on Sunday one of them would keep him while we taught Sunday school and another one would keep him during the service. They pretty much just followed him around. It was men that did that, and you would not believe that men that stepped up and did that. That went on for several years. As he got older, we didn’t teach Sunday school anymore, so we would take him up with us in the balcony and get a back pew, and he worshiped with us.  He loves that. He can sit there through an hour, but that’s evolved. There was a time in his life when he couldn’t do that. It’s really funny because everyone wants to speak to him and sit around us, but we do better if they don’t sit around us because he gets so excited. Every time somebody sneezes he laughs. Our church was large, but it helps that we’re in a smaller community.

We are really involved in Special Olympics, which has been really fun for our family. That’s one of our favorite things to do. We have a really big Special Olympics here in Crossville. Sometimes we have up to 120 athletes. Grayson loves it. We’ve met a lot of new people through Special Olympics, and we’ve gotten very involved in it. That’s been a really positive experience for us. You can get involved as much or as little as you want to, so we put Grayson out there. We want people to be around him and see what he’s like because it’s good for people to learn how to be around him too.

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