Tennessee Kindred Stories of Disability

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



Michael (39), Intellectual Disability, Scott (35), Intellectual Disability Cumberland County


"We knew our sons needed to live apart from us before it was a forced event. "

  • A Parent's Perspective
  • Posted on 9/13/2012

 

My sons are my favorite topic to talk about! Michael will be 39 in November and Scott is 35.  They live in a group residence, which is here in Crossville. They have been living there since 2009. That probably was the biggest challenge that we ever had. Moving them away from home from underneath my thumb, their dads thumb. Turning the boys care over to someone else. And no one does things like mama does.

Michael and Scott are both non-verbal. They both have a severe multiple disabilities, an intellectual as well as physical disability. They can’t tell you what is hurting, what is not hurting, or when they are hungry. They communicate of course by gestures and mama knows what they want when they want it. But trying to give that to someone else that is what is very difficult. It was tough but you know its been a good transition and I feel like things have gone well but it has been a challenge.

They are our only children so we don’t have brothers or sisters for them to check in. I retired early. I was the special education coordinator for the school district. I retired the year that we were building the house that they moved into in order to help them transition into the move. Actually I stayed at their house with them for the first 10 days with the staff. We were blessed to have an agency that was willing to work with us to do that. And frankly it has now sort of become a model for other families that are doing this.

Before they lived there, they were at home with us. Michael graduated in 1996 and Scott in 1999. Michael went from high school into day services. He made that transition while he was still in high school. A teaching assistant went with him and got him acclimated to day services. Scott followed the same suit when he graduated in 1999. Michael was fortunate in getting funded through the big waiver. Michael got on the big waiver maybe five months after he went to day services.  That was really was fast. Scott is still not on the big waiver he is on the SD waiver. It took 3 years after he graduated to get him into that. Even though he has gone residential we still can’t make the switch into the big waiver. His residential funding is non-existent. It’s private pay. Michael is fortunate because his is funded.

With them on their own, as a parent, it’s hard to know what to do and what not to do. We do have a key to their house, which is a good thing.  Sometimes we just drop in to check how things are going. We get them on the weekends. They come spend the day with us and we take them back that night.

We weren’t sure how that would work when they had been at our house all day and then we would take them back to their new house. What was a surprise it is that they would just walk in and there was no crying no clinging to mom and dad. They would just go to their room and say bye and the first couple of times that caught us off guard.

That is a good thing because that told us that they were happy to go back and they didn’t mind going back. What got to be funny, even though they don’t watch a clock or anything, they know when its time. Michael would bring us his shoes to tell us its time for me to go back. Of course he does that at his house now when he knows we are going to pick him up on Saturday morning he takes his shoes to the staff to let them know. That was sort of a shock. When they do come to their own homes they still know where everything is and get right back into that routine. We do have them for overnights and major holidays. We don’t do it all that often because they don’t get funded when they are not there. It takes a huge chunk out of their funding. We feel an obligation to make sure that we don’t abuse that because we realize that it might jeopardize the whole situation. But that’s okay too. They understand because families like to have their kids for a period of time.

One really neat thing happened with Michael just this year. It sort of has a twist. We discovered a cataract right after he moved into his new house. When we took him to the ophthalmologist he confirmed it and said it wasn’t time to do the surgery and he said you will know when its time by Michael’s behavior. This past February we came to conclusion that it was time to do that cataract surgery because Michael had lost some self-help skills. You could tell in his gaze he was not using that side as much.  He was totally dependent and he would run into things. When we took him to see if it was time he was getting no light whatsoever and we were right. He put Michael under general anesthesia and did the surgery in outpatient surgery center.  The added benefit was that the new lens inserted also corrected Michael’s severe near sightedness.  Prior to this, we had never been able to get a true acuity reading – not that he would have worn glasses anyway. 

When we were at home after the surgery, we walk out on the deck, it was a bright beautiful day and Michael’s mouth literally dropped open. He looked at me like mom what am I seeing out here? It was almost like there was a whole new world. He is reaching, using a greatly improved pincer grasp and he is seeing things he has never seen before in his 39 years!

Everything revolves around health issues. It was the summer of 89- Michael was 16 and Scott was 13. They were both late in walking and it was because of muscle laxity (hypotonia) and psychomotor delays. Michael didn’t walk until he was 9 and Scott when he was 6 because of that their feet pronated and it was very difficult. There is an orthopedic group Shriners that does free services for children with disability and they determined that it would be good for them to have corrective surgery on their feet.  The procedure is called a Triple Arthrodesis and we did both boys at the same time in Lexington, KY.

We bring these two boys home and they both have casts up to here (knees) on both legs. They couldn’t walk with the casts and they had to stay down. We went back six weeks later and got the casts off. That was an interesting time.  The community was very helpful to us. Our church at that time when they knew that the boys were going to be coming home and taking care of two boys and four casts is a challenge. They actually took turns and brought us dinner every single night for a week. We felt very surrounded by love and people cared.  

Living in a smaller community you get to know people that have similar challenges. It’s not like a big city. The boys were born in Chattanooga but after ten years there we realized that we needed to be back in a smaller town so that we could have some help with the boys. I’m an only child and I knew that my aging parents were going to need my help too. It was a really good thing to be in a smaller community where you could have support.

In 5-10 years, I see my boys right where they are right now because that was the whole point of them moving away from us. We knew they needed to live apart from us before it was a forced event, before one of us died or we could not take care of them. This way they were able to transition, live there together and be comfortable, happy, while we could still supervise. Five years from now I would expect that to be exactly the same thing. Maybe one of us might not be in the picture but hopefully we still will but as far as their future I would see it as it is right now.

 

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