1 in 68: An Autism Transition Story

My son Alex graduated last year, at a  graduation ceremony designed for him which included family and past teachers as guests. I blurred the photo so that people are not identifiable as I don't have their permission to share their photos.  

With the support of many of the people above, my son learned skills that have helped and will help him live his life.  He worked hard, teachers and therapists worked hard. It was so gratifying that a teacher from each of his schools came to his graduation.  These teachers really cared about their students.  

He graduated to no supports other than his family because our state had frozen services to people with developmental disabilities.  Many parents had to quit jobs to care for their adult offspring who had graduated. We were lucky that I had long ago become the on-call parent, not working for a while, then working part time at night, then selling art on the internet. We are lucky we can do that. And we are lucky to have some wonderful people that we pay to do things my son enjoys with him.

My son can do many things, and many more if supported. We were happy in September to hear that he had been approved to participate in some day programs.  We were hopeful that he would be able to continue growing and learning. But programs available are either not as structured or predictable as he needs, or they are dealing with content he cannot relate to.  He has struggled without the necessary supports.

The programs available provide a physical place for him, but not the staffing to give him the support he needs to learn and thrive.  The models in place work quite well for some people who are fairly independent.  The agencies' budgets do not stretch to provide supports for those with significant needs.  I am not faulting the agencies.  They are good people doing the best they can with the resources given.

The result is those who need significant support 
may end up with none

So on the books, the state can say they provided X to people with disabilities.  But a portion of those on their books are not able to receive services, because it is not offered in a way that is accessible to them. That would be like telling a man who cannot walk, "Look, five miles down the road there are crutches. Go get them."  Or to ask a sightless person to read aloud from a non-Braille book.

As a society, we must do better than this! 

Much of my time this past year has been spent advocating and spending time with my son. This is why there is less art here and more writing. This is the way it will be for a while.

"Do not let what you cannot do
keep you from doing what you can do."

John Wooden