Wednesday, April 19, 2017

Autism: Desperate for Answers and Solutions

Before we knew our son had autism and before he was referred to early intervention, we knew Gabe wasn’t talking as much as his talkative older brother or as much as the parenting books state.   I spent hours searching through child development books and language development books I could find.  I looked for ways to help Gabe learn to talk.  I thought if he learned to communicate all the other problems would disappear as his frustration levels dropped.   I bought books and toys hoping for a miracle connection with Gabe.  It never happened.
All of my research was done in bookstores and libraries.  The internet was in its infancy and not a viable source of information.  While searching the many bookstores, I never once even considered looking at the books in the “children with disabilities” section.   It never occurred to me that Gabe might have a disability.  This is a little surprising considering my parents are special education experts and I taught a special education class for a few months as a long term substitute teacher.  But I had on blinders.  I couldn’t even let the thought enter my head. 
All the general development books say is “read, read, and read”.  Read to kids to help promote language development.  Read so they can model language.  Read to foster social interaction.  Read.  Read. Read.  Not a single one gave suggestions for the child that abhorred reading.  Neither did they indicate I should consider he had a disability.  Maybe they did but I was not able to recognize it as it related to Gabe’s situation.  These were frustrating and terrifying months.  I remember looking at all the books about learning a second language and wishing for at least one book about learning a first language.
Around this time my father borrowed a book from a speech therapist in his school district called It Takes Two to Talk(Jan Pepper, 2004)   This book gave me the first clues on how to help Gabe.  I was very frustrated that this book was not available to the general public even in the large bookstores near Ohio State University.  If my father wasn’t working in special education and discussing Gabe with a speech therapist, I never would have found the book.  This book was a start and it gave me hope but it did not contain the answers I needed.  Our desperation remained.
When we were first learning that Gabe had a disability the internet was still very new.  But, it had progressed enough that I was finally able to use it for limited research.   It had a few relevant and reliable sources.  Even with our now archaic dial up connection and ancient computer, I was able research without traveling to a larger city or university library.   Rather than comforting me, the plethora of websites with conflicting information and opinions, overwhelmed me.  Had I caused his autism by having him vaccinated?  Thank God the “Refrigerator Mom” theory prevalent in the 1950’s was debunked by this time. 
Website after website discussed the latest theory that vaccinations were causing the rise in autism.   I read horror stories from parents who claimed to watch their children’s transformation from normal to autistic immediately following the shots.  So many sites proffered solutions ranging from simply removing glutens from the child’s diet to ridiculously expensive intensive individualized therapy and potentially dangerous procedures.  What I read terrified me.  I was scared that the only future for Gabe after his father and I died was for him to live in a group home.  My greatest fear revolved around his inability to communicate.  He needed to be able to communicate enough to not be exploited or hurt.  At the very least he needed to be able to tell someone if he is hurt.  At 3 years old, he still could not tell me when he was hurting or hungry or thirsty or tired let alone tell me someone had done something to him that they shouldn’t.  
I was desperate for answers.  I was willing to spend any amount of money on a toy, video, book, or therapy if it promised to fix whatever was wrong with Gabe.  Probably the only things that saved me from wasting massive amounts of money were my own extreme tightness with money and scientific skepticism. Ordering o line was not nearly as easy as it is now.  I would probably have wasted more money if it had been.  I was desperate and felt an urgency to finding answers that almost made my head explode.  Gabe was vulnerable unless he learned to communicate.
I did buy all sorts of books and toys hoping for a miracle.  Gabe had no interest in the books and toys his older brother had loved.  If he even looked at something in a store I pounced and bought it.  He loved sand, water, and trains.  Books and anything that involved other people were of little interest to him.  Any toys he seemed to like at therapy, I bought but he ignored them at home.  His brother enjoyed all of them but not Gabe.
During Gabe’s second and third years, he repeatedly and consistently rejected almost every attempt I made to read to him.  He squirmed and wiggled until he slid off my lap.  Gabe had a way of making his body rigid and unbendable.  Nothing I did could make him bend and sit when he wasn’t interested. There were only two books that he consistently would let me read to him during this phase: Walt Disney’s Mulan picture book which matched the Disney animated movie Nate loved to watch and a barnyard counting book I had read to him since he was very small.  I tried book after book.  Sesame Street, Disney characters, bright colored books, and all the books loved by his brother, Gabe scorned all of them and tried to escape.  I spent hours in the bookstore looking for books he might like. 

Finally, I gave up fighting him.  I needed to build on his interests.  Gabe loved trains.  I found a thick book about trains that had lots of pictures.  We looked through that book every day.  I didn’t read to him but at least he was sitting in my lap listening to me talk about the different trains.  I can still remember him turning the pages and looking intently at the book.  This led to what I dubbed “Train Therapy”.  I was still desperate but now it seemed we had a way to connect to Gabe.