A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON FOURTEEN: Future Planning

OBJECTIVE: Be able to write a plan for your young adult and take one action

When children grow up, it is supposed to get easier. When our children grow up, we face a host of new challenges we didn’t anticipate.
Once someone said to me, “Didn’t you realize he had a lifelong disability?”
What I answered was that yes, on one level, I knew. But to get through day by day, I could not think ahead. Who would have imagined he would ride the school bus, take a mainstreamed class, go to a sleep-away camp, learn to take public transportation into the city, etc. I was too busy coping with trying to get him out of diapers or figure out how to calm him or how to help him transition from the TV to another activity!

Now I am thinking about his future, all the time. What is he thinking? I don’t know.
The two thoughts my son has expressed regarding his life are as follows:

I want to live alone.
Please don’t let anyone check on me.

This is completely counter to my thinking. If we say that it would be good for him to live with other people, he immediately yells that he won’t live in a group home. I know what he is thinking - that he is not mentally retarded and that is not where he belongs. His vision is different than mine. I think if he lived alone he would be so isolated. Why not a group home for people with Aspergers and others with average intelligence but with significant learning disabilities? Does it exist? If so, where? How could one fund it? These are the questions that grab me late at night. So many more children are being diagnosed with an autism spectrum disorder. They will all grow up. They will all need jobs and a place to live where they can be as independent as their capability allows

EXERCISE:

To think about:

How do you see your child living as an adult? What kind of setting?
If you won the lottery and could afford to create any living arrangement with as many supports as needed, what would it be like?

Who can really say what the future will be for our children? In some ways my son is not as skilled as I had expected he would be at this point. In other ways, he has come such a long way from an out-of-control, not-yet- toilet-trained child of five.

Future Planning

This is a paradox of sorts. In order to get through rough periods we need to go one day at a time. And yet because of who our children are, we need to plan.

Remember: Not every lawyer or financial planner has expertise in these matters.
The best resource for a skilled attorney and or financial planner is other parents or an autism chapter or special education parent group.

The last chapter is not ours to write. In the nearly 20 years since autism/Asperger’s entered our lives, the wealth of knowledge and services has expanded. This fact gives me hope that acceptance, understanding and options will only continue to increase.
Hope alone is not enough to keep going. Here is how I would expand upon “H-O-P-E”.

H = Help – get it when you need it and give it freely to other parents.
O = Options – explore them; be open and remain optimistic
P = Persevere in a professional manner – Be a squeaky wheel but advocate thoughtfully and carefully
E = Expectations – Always keep them as high as realistically possible

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