Tennessee Kindred Stories of Disability

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



John (55), Intellectual Disability, Shelby County


"My biggest complaint is that people like us need help. Whenever they [policymakers] go to cut that budget it’s always the people with disabilities who get hurt by it. They’re the ones that need it. They can’t do for themselves. I don’t think that’s right."

  • A Parent's Perspective
  • Posted on 11/29/2012

 

My son is wonderful. His name is John and he is 55-years-old. When we had him evaluated they said he had brain damage. Now they say he has an intellectual disability. He also has signs of autism. He doesn’t have a lot of initiative and his interest span is very short. He doesn’t have a lot of verbal skills, but he can make his needs known. If you get his attention long enough he understands everything you say to him. He’s just the perfect little gentleman. I can take him any place I want to and I don’t have to worry about him acting out or anything. He’s just Mr. Wonderful. We’re really close. He wants to hold my hand all the time.

John lives in a group home in Hickory Hill. He’s been there about 20 years and I’m so thankful he has his group home. He loves that group home. They’re so nice to me and they really care about him. If something’s wrong they’ll just call me up and let me know because they know I’m going to always come if something’s wrong. He comes home to see me about every other weekend. He loves parties and he loves holidays and he knows when every holiday is going to be. He won’t tell you the month, but he can tell you when the holiday is. He’s just really an interesting person and a nice person to be around.

When John was growing up, there was nothing in the state of Tennessee for him, really. There wasn’t even a child psychiatrist in the state of Tennessee. John was diagnosed when he was three-years-old. We took him to Washington University and that’s when they said he had five areas of brain damage. They advised us to put him in a home, so we sent him to the Brown School down in San Marcus, Texas. He was there about five years and then they told us he wasn’t going to progress a lot so we should look for something cheaper. We got him in at the Arkansas Children’s Colony over in Conway and he was there about 10 years. He was very fortunate to have a 1:1 there. After some time they stopped and said that they all needed to be mainstreamed. I looked at my husband and said, “There ain’t no way that John would ever be mainstreamed.” He was past school age, maybe 20, so he came home and he lived with us for 15 years. One day I came home and my husband said there was a place in the group home for him.  It was out in Frayser, but they moved to Hickory Hill.  He loves it there.When he comes home, I admire his patience. He will come in the house and before he takes his coat off or puts his lunch box down he goes into the kitchen and turns the paper towels this way. He goes in every bathroom, checks the toilet paper, and turns it that way. If he came to your house you would know that John had been to your house because of the toilet paper. I don’t care where he goes, he changes the toilet paper. You know, he does funny things like that.

Sometimes he has his pants on, but he didn’t put the right leg in so he has to undress. When he undresses he has to unbutton the pockets in the back and everything has to start from scratch. When he goes to church on Sunday and is dressed really nice - he likes to dress up - but when he comes home I’ll tell him to put on other clothes and take off his coat and tie. He’ll have to take everything off and put on fresh even though he’s only had his underwear and under stuff on about 2 hours. And you can’t talk him out of it. You see, he has all those peculiar ways. It’s kind of funny. I have a sister and she says, “Don’t that make you mad?” I say, “I got a washing machine. I don’t care.” He’s a very lovable person. He walks in the doctor’s office when I take him to the ear doctor that has a big open space and he walks in “Hi!” Everybody knows John and he’ll go wave to them. When he leaves he waves to them all “BYE!” He’s a neat person.

The most challenging thing is that you have to be there with him all the time. Wherever I go I have to take him with me. I couldn’t go down the street to the grocery store.

When we first had John diagnosed, I was down like anybody. My husband looked at me one day and said “I’ll tell you something, if you want to live like that and be depressed, you’re not living with me.” And that just snapped me out of it. My husband was really a fine man and an excellent father, so I thought he might put me out and I’d have no place to go. And we both worked together to work with him and took care of him and I guess that’s the reason that I’m still a happy camper, doing what I think his father would want me to do. I can’t stand people that don’t accept their responsibilities, no matter what they are. Like my mother used to say “It’s only for a short period of time.”

Really and truly, people who have not been around people with disabilities; I don’t think they know how to act towards them. I had a very good friend and she’s never asked me about John and I think the reason why is she don’t know what to say, but I’m very open about John. But you better not mistreat him. Oh God. You are in big trouble in my house if you ever mistreat him.

I am eighty years old. I have a conservator for John. I’m a conservator and my niece is a co-conservator. And this might really sound corny to you, but I have done everything I know to ensure John’s future and all I can do is leave it in God’s hands and that’s the way I feel about it. I’m not going to worry about it because I have other things to worry about. I’ve done everything I can. I guess John would stay at the group home and in talking to my niece, I told her just take John riding some, see that he has those holidays, which I trust they will do that for me.

My biggest complaint is that people like us need help. Whenever they [policymakers] go to cut that budget it’s always the people with disabilities who get hurt by it. They’re the ones that need it. They can’t do for themselves. I don’t think that’s right.

Well, that’s about the story of John. Like I said, God’s been good and put him in the right place at the right time. That’s all I can say. John has had a good life as I’ve found and as long as I am able he will always have a good life. So he’s an ongoing story. And tomorrow it might change. You never know, but today it’s pretty good.

 

 

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