""If Seth had waiver services, everything would change. He would have something to look forward to and something to do.""
About: Seth (age 23)
Age Range: 22 to 35 years
I have two children. My youngest is 21 and typically developing. Seth is almost 23 and has autism. When Seth was a baby, he never really slept. He was awake all the time. I remember timing him and in a 36 hour period, he only slept 6 hours. Although he had all the classic signs of autism he was misdiagnosed throughout early childhood until a re-evaluation when he was 10years-old. We were living in New York at the time.
When we finally had the diagnosis, things began to look up a bit in terms of his education. He began to attend a school that catered to kids with autism. His teachers seemed to know what they were doing and he was maintaining a passing average. In 9th grade he began a transition program. He was in a classroom with one teacher, 8 kids, and one assistant. Seth also had his own private aid that sat with him to keep him on task. He could walk the halls and there were kids there he knew from the neighborhood. And then I was offered a job in Tennessee. Everyone I called, including people in the school system, assured me that the programs in Williamson County in Tennessee were comparable to those in New York. Not so.
They only put him in the two classes he needed to pass the T-Cap; math and English. After class he would sit with a tutor to go over the material, but the rest of the day he spent watching movies. I was called constantly with them telling me he was being disruptive. Once, an assistant principal called and told me they could not handle him that day and asked if I would pick him up. I told him absolutely not. I told him to call his autism specialist or whatever he had to do, because it was his job to educate him. I was livid that they would tell me they couldn't handle him when they refused to give him the services he needed to succeed. They had no right to deny him an education. It was a tough road but Seth graduated. He has a regular high school diploma, but they basically just gave it to him.
There was a summer program that Seth was able to go to at TRC in Williamson County for one summer. The problem was the counselors weren't equipped to deal with somebody with autism especially in a new environment the first few days. When you put these kids in a new environment, they melt down. They don't understand what is expected of them. There's no structure, no routine, no schedule. He couldn't adapt quickly enough for them and so they wanted him out of the program. A new psychologist on staff was really tuned in to kids with autism and he created social stories for Seth that helped him know exactly what to expect throughout his day. It worked beautifully. We had ups and downs in the program, but in the end it just wasn't a good fit.
My boss gave Seth a job in the mailroom. He got a wonderful job coach through Vocational Rehabilitation, but he was only approved for 20 hours of coaching. Seth needed months of support from a job coach. When they took the job coach away it didn't work out. Seth went from working 12 hours a week down to 4 hours a week. He had this great job opportunity, but they pulled the job coach too soon. So now essentially, my boss's company is letting Seth come in one day a week just so he has something to do.
While we are waiting for the waiver, I hate to say it but he is just home alone all day. He can't go anywhere. He's trapped in the house. He can't manage on his own. He can't commute. He can't drive. He can't manage money. He fights us constantly. His mood is terrible. His behavior is becoming harder for us to manage.
He does leave the house twice a week. He goes to work one day and he takes piano. He just practices and practices. It gives him something to do. He plays piano really well. If a kid is bright enough to learn piano, he is bright enough to have a job. It's just his learning curve is so long and so slow. You look at him and you just want him to be an adult and he's not. He can't do it. It's hard. I have to make sure our neighbors know he's alone just in case. We don't have any family here so it's tough. There is really no support for him. He has no friends. It is hard on our family. There's no respite. We really can't do anything. My husband and I can't go on a vacation. We can't take him places. You can't change his routine. We just basically stay home and do nothing.
My younger son knows, in the back of his mind, that one day we're not going to be here. He's going to have to take the responsibility and it's not something he wants. We've tried to make accommodations. We have an insurance policy that when we both die there will be a trust that is funded. He'll have some money, but it's not going to be enough. We just don't have that kind of money to fund it enough to maintain him. My younger son will have to support him. It's scary. I don't know what will happen. When we're gone he'll be eligible for the waiver because he'll be homeless. But then again, what does a state run group home look like? I have no idea, because I don't want to face that reality. We have no choice.
If Seth had waiver services, everything would change. He would have something to look forward to and something to do. All of us would be happier because of it. When he has something to do, he's not as disruptive. We know he'll never live alone, but he would have something to look forward to everyday and he wouldn't be miserable all the time. He's got to be depressed. He's got to be. You can't live and watch TV all day. I'm trying to get him into an adult day program, but it is $9000+ a year without transportation. He's on SSI but that won't cover it. He's eligible for the Medicaid waiver, but we don't have the waiver. He's on the waitlist and we're trying to get him into a group home, but there are 10,000 people on the list.
It's really hard for families who have kids with disabilities. When our kids are younger there are a lot more services. It may not be perfect, but services exist. My husband and I both have to work all day. That's just the reality. School services ended and now Seth stays home by himself. Talking to other parents has been the best resource, but the story is unanimously the same, there is nothing out there.
Updated on Tuesday, January 9, 2018