This is a guest post by Liane Kupferberg Carter.
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 is a guest post by Michael Nunnelee, a 23-year-old with high functioning autism. Michael is a college student, currently working on a double major in Marketing and Management.
Imagine being locked away in a prison that you cannot see or touch. Imagine hearing people talk to you, but not truly being able to listen. Think about the daily comforts of routine you take for granted and imagine it being an obsession, think of how frightening it is to hear words like change, different, and out of order. You are on the inside looking outward at those trying to free you from this seemingly inescapable prison of the mind, and in order to break the invisible shackles and dissolve the hidden bars, you have to learn to rely on those you can’t communicate with.
My name is Michael Nunnelee, I am 23 years old, I have a certificate in audio engineering and I am currently working a double major in Marketing and Management. I have been in 2 bands and played successful concerts and booked a concert for a Seattle band in Spokane. I have been in advanced leadership roles throughout my high school career and also a camp counselor for a leadership camp. I seem to lead a somewhat normal life, but here is the catch: I was diagnosed with classic infantile autism when I was 2 years old. My mother was told by a specialist at a Children’s Hospital in Seattle that I would probably never speak much and might end up in a group home setting. My diagnosis was later changed to high functioning autism when I was about 7 years of age.
As a child I was a prisoner of my own mind. My siblings and parents would try and communicate with me and I wouldn’t be able to communicate back. I wanted to so badly say what I was feeling, doing, and wanting to do. No matter how hard I tried and how much I desired, I could not. I was not supposed to carry out a normal life. Despite those who didn’t think I could do it, I overcame my prison and broke out many years ago.
I couldn’t have done it without my wonderful siblings who did their best to work with me, my mom who never gave up on me even when all seemed lost, and my teachers. Without their guidance and knowledge of my condition and how to improvise, I would have been lost to the depths of a bitter darkness that has no name, face, or feeling. This is in no way a means to communicate a hopeless tone or to hold my own accomplishments above anyone, this is a message of hope. I managed to overcome multiple trials and tribulations because of early intervention and undiminished will.
In some instances, it is possible to help your loved ones overcome this trial. I do not look at what I went through as a curse, but rather a blessing. A blessing that taught me that perseverance, drive, and the will to never give up are virtues that will guide me through this life. Dealing with autism has prepared me for many of life’s struggles. Even though I will face many more, I will hold my head up high and not be afraid because I have overcome a great challenge and I am willing to face many more.
Remember, autism is not exactly like what you see in popular film; there are many different forms. Some of it can be debilitating, while others have symptoms that can easily go unnoticed in daily life, and many are able to live normal lives. If you have a loved one going through autism, it is never too late to help them. The best way you can do that, besides special instructors or adaptations to learning styles, is to reassure them that you love them with all of your heart and soul. After all love is something that everybody needs regardless of physical, mental, or emotional limitations.
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.