Tennessee Kindred Stories of Disability

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



Jess (25), Down syndrome, Shelby County


"That is probably the biggest worry of any parent who has a child with special needs. You want them to outlive you in one sense, but then you wonder what will happen. "

  • A Parent's Perspective
  • Posted on 11/30/2012

 

I have three children in my family who are 27, 25, and 22.  My oldest daughter is married with three little boys and my youngest son is away at college.  Jess has Down syndrome and he used to be away at school, but he’s back now.  It’s going well, but it was a big adjustment for him.  He misses it, but we keep him really busy and he’s got a good situation with work and school.  He stays in touch with his friends and we are going to visit soon. 

The three of them are really interesting because they told us that having an older and younger sibling meant that he would always have someone pushing him and someone pulling him, which is great.  They still have their times where they don’t get along very well, but they’re more typical than not.  They have jealousies and spats.  My daughter has always felt motherly toward Jess.  They’re all very close.  We had a philosophy of not treating him differently because of his disability, but treated equally.  Some of the best advice I ever got was to treat Jess exactly like my other children in every area, which means that we pushed him.  There were times when we pushed him too hard and when we didn’t push him enough.  We figured out what he could and couldn’t do pretty early.  It’s just like in anything else: there are degrees of ability and inability. 

Jess reads at a third or fourth great level and he loves to write.  He has great people skills, which led to some very good job experiences.  He also has no speech impediments, which has helped.  Those are his strengths.  He tends to be very stubborn.  Right now he has three different jobs and one of them is right down the street from our house.  He is currently working at a pizza place, a document-shredding company, and a school in Cleveland.  The pizza place is less than a mile from the house and he walks home and lets himself in.  One day a week he works a half-day at the YMCA, which is probably his favorite job. 

His challenges are his level of functioning.  Jess is so high-functioning that he wants to have all of the things he sees his siblings and friends going through, like being married and driving.  He was upset to come home and have to live with us again, so we made him a “man cave” kind of thing.  That’s one of the challenges, though; he wants to be really independent.  Having a younger brother is also difficult for him because he has to watch his younger sibling get things that he wants.  He got very upset about him getting to drive.  I gave Jess the driving manual and we practiced driving in a school parking lot.  He also has a golf cart, so he knows a little bit about driving.  His reaction time is slow, though, and that would worry me.  We never say never about him, but I don’t know if he will ever drive.  I have yet to see him hit a plateau.  He might mature into a faster reaction time, but not yet.  As much as I want my youngest son to get married someday, I think that will be really hard for Jess.  A huge issue down the road right now is the thought of Jess being married.  Basically what you’re doing is taking on your child’s spouse as well.  In his previous school, it was dorm-living that was very similar to college.  What his current school is talking about is getting condos that 4 people share.  They would have to share the grocery shopping and the cleaning and all that.  I think that would be the most independent he would have, but that’s pretty independent.  I think he would be happy with that too. 

The future is really the biggest challenge.  He’s always had great health.  We just saw a cardiologist and everything is great.  My husband always says as far as hard things go, this is a light touch.  It’s not a whole lot different from a typical child.  The vision for him would just keep doing what we’re doing until the apartments at Trousdale are up and running.  He’s got really close friends; he’s enjoying school and work.  He’s got a bigger social life than we do.  Everything is working well right now in terms of education and healthcare.  He does qualify for all the government stuff, but we don’t use it right now.  Employment and housing’s great and his social life is great.

Jess has been able to get plugged into our church as well and help in a third grade Sunday school.  We wanted him to know that the church had served him all his life and it was time for him to serve.  It’s such a great experience for everybody involved.  In our small community, he has always been accepted him completely and Jess probably knows more people in the community than we do.  It’s a safe community and I think it’s been so healthy for everybody.  There are a couple of other people that have disabilities as well so we have a handful that other people know.  Lots of people have just grown up with them.  I do think a reason why Jess is so well received is because he is so high functioning, so I can’t imagine the challenges other families go through when their child isn’t as high functioning. 

We don’t have many adult services that are good, so we don’t use any of them right now.  There are some and there are some transportation services, but they haven’t been very good.  We’ve been blessed financially.  One of our big concerns for the future has been planning for three retirements so that Jess won’t be a burden to his siblings.  We want him to be able to continue in his current lifestyle if he outlives us.  That is probably the biggest worry of any parent who has a child with special needs.  You want them to outlive you in one sense, but then you wonder what will happen.  You have to take comfort in the fact that the Lord’s got a plan for this child and he’s got a plan for him.  You have to feel that way about all your children.

We just try to make sure he has a full life.  That’s one of our challenges and if he wasn’t such a social person it wouldn’t be a big challenge at all.  We do have guys spend the night and they are so funny.  The first time we did it one of the boys’ families said that their son had never been asked to spend the night before.  We’ve known this boy for years and years.  They all grew up together playing baseball.  It’s really fabulous that they have a sense of unity and history that I think a lot of adults with disabilities lack.

I think there needs to be more research into the connection between Down syndrome and autism and the discrepancy in functionality.  Jess doesn’t have autism, but if I was a parent I would want to know.  Jess’s generation is the first to benefit going to the public school system until they’re 22.  Most of them have grown up in a home instead of an institution, so we’re really just now getting to see these adults who have been the recipients of a whole different thought process and philosophy on how to raise a special needs child and how to integrate them into a community.  I think that some of them learned behaviors in an institution that they wouldn’t have adopted otherwise, but I don’t know.  I do wish there was more government help, especially local government.  Jess gets social security to help with his school tuition, but I wouldn’t put him in any of the public schools I have seen.  We are looking at private for the rest of his life.  There needs to be more financial help for parents with adult children with disabilities.  Once you’ve educated them and gotten them to this level, then what do you do with it?  There is nothing for where some of them live, either.  One of Jess’ friends went to a school for two weeks before his parents brought him home because it was so bad.  I don’t think the government should be the answer to all our problems, though, but I’m just grateful we are in a good place.  It’s heartbreaking that there are families out there that don’t have the same resources we do. 

 

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