Thursday, March 23, 2017

Reflections on Autism: Achieving Independence

Transcript from my video published on YouTube 3/23/2017

Many year ago, my second child was a little boy who could not communicate his most basic thoughts and needs.  He seemed to exist in his own bubble at times.  Gabe was so non-responsive that we thought he must not be able to hear us.  Even a partial hearing loss would make sense of some of his behavior and his isolation.  For a while, I hoped that was the cause.  At least I could understand hearing loss.  I understood how the ear functions.  If it wasn’t his hearing, what could it be?

Gabe’s hearing was tested.  It was fine.  In reality, his hearing is much better than average. 

Just shy of his 3rd birthday, Gabe was evaluated by a team of developmental disability specialists.  The decision was unanimous and undeniable.  Autism.  That horrible word that strikes fear into the hearts of parents everywhere.  I am not exaggerating.  I was terrified.  My son’s future was a giant unknown.  His older brother still had an entire world of possible futures.  What future could Gabe have?

Recently Gabe asked me if the specialists that diagnosed him gave us any information about how far he would progress or what his future held.  No.  Nothing.  The range of developmental issues are so vast that the experts can give no indication of how far he or any child with a diagnosis of autism might progress.  There are too many unknown factors involved.  No one can look at a three year old who does not communicate and predict that he will qualify for a national DECA competition in high school that involves a lengthy interview and verbal presentation.  I certainly didn’t.  We didn’t know if he would ever be able to live independently.

For many years the list of things that Gabe couldn’t do but should be able to do was lengthy.  It still makes me cry when I think about it.  Fear for his future was overwhelming and, at times, paralyzing.  If he never learned to talk or take care of himself, what would happen to him when I am gone?  This fear drove me to action.  My son needed to become as independent as possible.  I had no idea what that meant or what limits we would hit.

My son had a major advantage over most children with a disability.  Many people say that this advantage was me.  They are wrong.  My son’s progress and his success stems not from me but from his grandparents.  My parents have spent their entire careers educating children with disabilities.  They both understood the challenges he would face in school and in life.  Without them, we would have floundered.  Without them, we would not have known what questions to ask or where to look for answers.  Without them, we would have listened to the naysayers and we would not have pushed him as hard.

People in our small town marvel at his progress.  They have no idea.  We moved here when Gabe was entering 2nd grade.  He still couldn’t read, couldn’t count, and couldn’t sit still.  However, he could and did talk at times.  Most people have no idea how far he progressed before they met him.  He was essentially nonverbal until he was 6 or 7 years old.  He never spoke unless asked questions.  Even then information was not easily obtained and often I didn’t know what to ask to help him explain his thoughts.

Fast forward a decade.  My 18 year old son Gabe is finishing his first year living in a dorm at a fairly large public university where he is studying business and finance.   He finished high school with almost a years worth of college credits.  He played football, ran track, wrestled and qualified for the national DECA competition.   This may look like a miracle.  It isn’t.  It was hard work.  Many nights of tears and frustrations. 

Gabe’s accomplishments are amazing but not miraculous.  Gabe is an amazing person with an internal drive that leaves me breathless.  He wasn’t born with this drive.  None of us are. He developed that internal drive to succeed as he grew.  I watched it develop throughout the years.  He was challenged and learned to overcome those challenges because we always believed he was capable of progressing. 

Others can learn from Gabe and his story.  I finally convinced him to let me share his story only because he knows others might benefit.  He doesn’t want my writings and talks to be about him.  Instead, I am to focus on the wisdom that we learned from his grandparents and many others.  So, Gabe is the central character in my writings but he is not the focus.

When I think back to the time when Gabe was first identified as having a disability or when I think about some of the problems we have overcome, I remember the paralyzing fear.  At times, I felt like I had blinders on because of that fear.   I could not focus.  I could not think.  I no longer worry about what will happen to my son when I am gone.  Freedom from fear is the gift that I want to give other parents.