Liane Kupferberg Carter
Editors’ note: While some of the referenced documents discuss parents who seek “cures” for their children with autism, it is our opinion that overall Autism Speaks advises those parents to seek evidence-based supports and therapies.
If you ask our son Mickey what he might like to be when he grows up, he will probably say, “A librarian. Or a Pokemon Master!”
There aren’t too many jobs for a crackerjack Nintendo player, but Mickey is learning other skills. At 18, he attends the Comprehensive Support Program at our local public high school. But no one program can ever be fully comprehensive. We also run a home-based program to address self-help goals, and send him three mornings a week to a vocational and life skills program at an A.B.A.-based learning center.
At home and at both his schools, we work on such tasks as making a grocery list and food shopping; speaking appropriately in a store, bank or restaurant; waiting in line; giving the cashier the correct amount of money, and waiting for change. We practice answering a phone and taking a message; doing a load of laundry or unloading the dishwasher; following a recipe, measuring ingredients, and discussing the food pyramid. (No matter how much he insists, chocolate mousse cake isn’t a source of protein.)
Last year, Mickey was proud of his job at our town library, where he alphabetized and shelved DVDs. He has also liked sorting mail for the high school office staff and distributing newspapers to classrooms, singing out a cheery, “Speedy Delivery!” each time. With the assistance of a job coach this year, he does data entry at the Red Cross one morning a week. He is building a resumé of work experiences.
But his biggest challenge isn’t acquiring basic work skills; it’s learning social behaviors in the community and in the work place, such as greeting others appropriately, modulating his voice, or knowing that if a task gets too challenging, you don’t say, “I’m out of here!” and make a run for it.
His dad and I have dealt with the mechanics of protecting Mickey’s future: we’ve created a special needs trust, rewritten our wills, and petitioned the court for legal guardianship. But there are still fears that make my heart race. What happens three years from now when that little yellow school bus stops coming to our front door? How do we build a full life for him after high school? Where will he live? He has had seizures for many years; even now they are not fully under control. How will that impede his desire for greater independence? And what of our ultimate dread: who will love him when we are gone?
When Mickey was diagnosed 16 years ago, there was no road map to tell us what lay ahead. In the years since, Autism Speaks stepped in to fill that need with the 100 Day Kit, a tool that gives families the critical information they need after a child has been diagnosed with autism. Parents of children aging out of the school system face a similar juncture, standing at the foot of a mountain that can look insurmountable. The new Transition Tool Kit will given them the traction they’ll need for the climb.
All parents want the same things for all their children: loving friends, good health, work that is meaningful to them. One of my favorite quotes on parenting is this: “There are two lasting bequests we can give our children. One is roots. The other is wings.”
We are giving Mickey all the grounding and love we have. We hope he will soar.
This essay was originally published at the Autism Speaks blog.