Tennessee Kindred Stories of Disability

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



Louie (13), Angelman syndrome, Davidson County


"We have services now but we pay for everything out of pocket. "

  • A Parent's Perspective
  • Posted on 2/25/2013

 

Louie is 13-years-old and has Angelman syndrome. He can’t talk and he has to have someone with him 24/7. Most kids with Angelman syndrome don’t sleep and some of them don’t sleep at all, like 2 hours a night. We are pretty lucky. Louie can sleep well but he sleeps in a special bed that is enclosed. He can be left in the bed, but we still have to have a monitor on all the time in case something happens to him. My husband and I both work, so we use babysitters. We have a big house and empty bedrooms because our older kids have moved out, so we trade free room and board for childcare.  Right now we have one person living with us and she works about 20 hours a week watching Louie.

Louie is great. He is very affectionate and sweet to people. He is getting calmer all the time and for that I feel really lucky. He uses about 20 signs and he will initiate communication. I think he is doing fabulous. He hasn’t had a seizure since 2004. He has been on only one medication, and we are really lucky because most people with Angelman have severe uncontrollable seizures.

He can walk really well. His motor skills compared to other children with Angelman are good. He can go up and down stairs. He can feed himself.  He eats everything and he has no feeding issues. He does have some challenging behaviors. He pinches. He will just pinch you really hard. It is better now but he used to really hurt people. He kicks sometimes too.  He kicks waiters in restaurants. He kicks teachers at school who he doesn’t like. He kicks students who bully him. He also kicks people who are really nice to him. If my husband is trying to take him to the bathroom and he wants me to take him to the bathroom he will kick my husband. We are trying to replace that with kicking a soccer ball.

The toilet also has been a challenge. He does have a sign for bathroom and he does use it appropriately, but he will also use it to get out of anything he doesn’t feel like doing. There are times where he doesn’t sign. He doesn’t wear a pull up anymore but he still has accidents sometimes. They are few and far between. He is basically toilet trained but that was a huge challenge.

Louie is really attached to his sisters. The oldest one he never lived with because she was in college when he was born. They are not as close. The second one just graduated college. She really adores him, but she is also very strict with him so they fight. The twins are like a pile of puppies with him. When they come home after they have been gone for a while he doesn’t speak to them for a couple of minutes because he is mad since they have been gone. Then he laughs and hugs them and he won’t let them go. 

Louie is on the waiting list. I got him on the waiting list when we moved here seven years ago. Since we make good money, he is not ever going to move up the waiting list. Maybe when he turns 18 and they review his own personal income he might get bumped up a little. That is why they tell people to sign up for the waiting list no matter what because if something happened to me and my husband, at least he will have moved up. Or if he turns 18 he will have already been on the waiting list, so he might have a higher chance of actually getting off the waiting list and getting services.

In California you are entitled due to your diagnosis. It is not a need-based thing. Back in California we had respite according to the level of disability and the amount of care we had to provide. In California we were getting 8 hours of respite when we left, but we would be eligible for at least 20 hours a week by now. Now I’m paying for all of that and those hours. If I didn’t have the money to pay for that I wouldn’t be in school and I wouldn’t have a job. It would be impossible. In California Louie had a lot of special equipment and that was all paid for by the state. In Tennessee it has to be covered under our own insurance. Insurance doesn’t necessarily pay or you have a big deductible. For him, therapy is supposed to be done at school and in California there were therapies that could be done through the program. But here it has to be either at school or through your personal insurance. I knew right before we moved here that living as a family with a kid with a disability was going to be a lot harder in Tennessee.

We have services now but we pay for everything. I wouldn’t be as worried about bills if Louie got services. It doesn’t matter how much money you have you still worry about bills. We don’t get financial aid for any of our kids. We are broke at the end of every month just like everyone else. And what would happen if one of us lost our job? We definitely wouldn’t have enough money and we wouldn’t have any help. If we were to come off the waiting list we would probably get Louie more therapy.

My biggest fear for the future is what will happen to Louie when I die. Well that is the other thing about coming off the waiting list. What I would hope is that we can find some kind of a program for him that wouldn’t be a warehouse but that had ongoing therapies and activities that would keep him awake and alert. There is a program I know about in Kentucky that seems promising. To be eligible, you have to function as a 5-year-old. So, we are doing all we can to get him functioning on that level. What is nice about that place or a place like it is that they have school and structured activities forever. I’m aiming towards that. I think it is a farfetched goal and I think it is not likely that he will function at a 5-year-old level, but we are working at that regardless.

His sisters used to say when they were younger that they couldn’t believe we would consider putting him in the Kentucky program, but now that they are older I think they get it. If he didn’t have a place to live and thrive and if something were to happen to my husband and me, it would mean living with them. They love him, but living with Louie and taking care of him is very challenging. My husband and I take care of him. I am the main one who takes care of him. His sisters haven’t felt it as a huge burden. We have talked about this place in Kentucky and they are coming around. They want to go with me and look at it and think about it. I have told them that if I’m dead and he is there, that means they need to go and be there for holidays and take him home. It doesn’t mean they don’t see him. It means they are active in his life. They all say they really want that at this point. All of these people who love him so much are just kind of busy and I’m not sure about the future. I’m sure they would rise to the occasion if something happened, but I’m not sure they have really contemplated what it means. I really try to not worry about this on a daily basis, but it never really leaves my mind. 

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