Roots and Wings: Giving Autistic Children What They Need To Succeed in Adulthood

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 Nintendoplayer, 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 ABA-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 résumé 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 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 and 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.

 

Follow Liane Kupferberg Carter on Twitter: www.twitter.com/LianeCarter

Comments

[librainstars]

08:49 PM on 02/24/2011

I started reading this and thought Im not going to tear up. Well I did. My son has PDD. Hes 20 now.
Its the hardest thing I have dealt with in life. Back then I had not heard of it much. My worst fear as yours was
"Who will love him when we are gone" who will calm him when things go bad? Who will explain to him things he just does not always understand? Who will just plain understand? He will tell the hospital when hes hurt he does not feel pain like you and I?
He can take care of himself. Drive, work at times. But life is just not the same nor does he think the same.
At times that can get him in trouble. I worry.
Quoted out of your story"standing at the foot of a mountain that can look insurmountable"
Thats forsure. What you said at the end "We hope he will soar"
May they all soar and find thier way. As what a gift these children are.
May your son do well.

[thinkingwomanmillstone]

03:26 PM on 02/24/2011

The little yellow school bus will stop coming to my house in June. As I lay awake at night and worry about what will happen to Zachary next summer and next year and for the rest of his life, I try to comfort myself with the thoughts that at each step of the way, I've faced these same anxieties. Yet, at each step of the way, Zachary has taken the ball and just headed for the goal line. It is especially hard to think that things will work out since my state has decided not to pursue housing options for the disabled and has eliminated most day programs. Employment opportunities are so hard for everyone and there is now so much competition for the entry jobs that were once open to our sons and daughters. I seek out the knowledge of those who are a few years ahead of me in this journey and ask question after question. It will be a true waste of a lot of hard work by the teachers, job coaches and Zachary himself if he cannot find employment that will allow him to use what he's learned. So once again I must call to him and say go long Zachary the ball is coming to you. With a lot of hard work and help, we just have to think he'll catch it and run for the goal again...as he always has.

[Joy Bronner]

04:32 PM on 04/03/2011

I am have the same fears having a daughter with autism. But you know everyone has difficulties in life. The race is not given to the swift or to the strong, but to the one who endures to the end. I just want my daughter to do her best and lean on the lord. He is the Only one that can be there when I am not and he is the only who can go in to her situation and lead her in the path that she can go. I just to teach her to love herself and not to let anyone take that love from her. To hell with the world and what they have to say about it. To God be the glory. When it is dark...light a candle but never let your problems or people put your light out. This is the lesson I hope to communicate to her heart that will keep her every day through out her life.