The Great Unknown Future of a Special Needs Tween

My son’s future is never too far from my thoughts. When I recently had surgery that was supposed to be minor that kept me on the couch for a week, I thought quite a bit about Michael and what his future may be like. Since I couldn’t do much besides take the kids to school and make real simple dinners (thankfully Michael did not have much homework), he and his sister had to do more for themselves with extra help from Dad. Several times, Michael came by me to snuggle and tell me how much he wanted to help me for all the times that I’ve helped him. It was sweet, but I was just thinking about who would help him.

handsI’m not alone. Multiple surveys have shown that parents of special-needs children worry a lot about their children’s future, especially as they near adulthood. Who will tend to their needs if a parent isn’t available and they can’t do it themselves? After Michael’s autism diagnosis, I sought out every book I read every book on the subject and remember coming across a statistic saying that 70 percent of people with autism can never live independently. Autism is a spectrum disease; there are people with it who can’t talk or tend to any personal needs while others, like Michael, are considered high-functioning and can do a lot for themselves. But no one has a crystal ball: Will Michael be able to have a regular job and live by himself? (Although he and his sister have already discussed buying a place in the country where all four of us can live together and we can have lots of animals. I don’t think my husband is on board with that idea.) Will he be able to manage his own health care or bank account?

Friends tell me to not worry. He’s just 12, but these 12 years have passed quickly. His county case worker already mentioned at her last visit that when he’s 16, she’ll need to revisit Michael’s disability classification. She told me flat out that it’s hard for kids like Michael to qualify for adult services since he is of average intelligence and doesn’t have any physical problems that may get in the way of him taking care of himself. We sought out the disabled classification so we could get a Medicare waiver to cover his in-home therapy since our insurance didn’t offer that benefit and we could not afford to pay for it ourselves.

Healthcare is another area of concern. Now that he is 12, I can no longer go online and view his medical records. We live in Wisconsin and there apparently is a privacy law in place to shield teens’ records from their parents. Of course, I am still able to call his doctor and send her emails but what happens as he gets older? At what point will a doctor say it’s Michael’s decision about whether or not he receives treatment or wants to take medication? And what will Michael say?

Besides the financial concerns – will he be able to get a job that allows him to live independently? Will my husband and I have the financial resources to keep supporting him if necessary? – there are practical concerns. Will he be able to cook for himself, go shopping, do laundry and keep where he lives clean? We are trying to teach him basic skills like that, but they don’t always stick (as any visitor to his room can attest). Will he be able to drive?

I also worry about his sister someday having to be responsible for him. (Can you tell I’m a bit worrier?) As we all get older and if my husband and I can no longer help him out, will she be the one to do it? They are very close – in age and relationship-wise – and I know she would do it in a heartbeat since she already helps him out in different ways. But is that fair to her?

I know all parents worry about their children and their future. It just seems that my concerns aren’t the same as my friend’s and they don’t always understand. I just sometimes wish I could jump ahead 10 years and see how he’s doing and that he’s Ok.

 

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MaryBeth Matzek

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