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It has been two years and a half years since I first heard the word Autism float through the air and into my thoughts. It has been an incredible journey. I know that sounds cliche, but I do not think, personally, that there are many journeys in life like this one. Maybe that is my own ego erupting with, "Autism is something that only those close to it can understand." But, it changes you, your family, how you see the world, whether you like it or not. I have found that some changes were very painful for Gabe and I. Such changes forced us to stretch our thinking and ourselves in understanding how to continue forward, while still embracing each other's limitations. Some changes have opened my eyes to a world that does not lend itself to a "wait and see approach". The world of Autism has many different countries with numerous dialects. What is acceptable in one country of Autism, may deliver a totally different response in another. Each day the language may change, current currency exchange may rise and fall, and the day's special could be something wonderful you never even anticipated.
I remember what it felt like to have a child that never interacted. My son's absent smiles, toys that were more preferred than me and the empty look as he gazed off in the distance. Gabe tantrumed constantly about almost everything from getting into the car, eating or putting on his coat. Everyday things became huge mountains to climb. To top it off, Gabe was non verbal without any use of gestures. When some days became too much and I needed a little reassurance that we would make it through this. I would long to hug Gabe. But, giving him a hug was received as something painful and unloving to Gabe. He would so desperately want to get away from your touch. As parents we felt like our son was unreachable in every way a parent should love their child. He was in his own world and we were not welcome.
I was fortunate that that period lasted for only a year. It was a year of desperation, loneliness, and anger. Anger not towards Autism, but towards the medical profession for taking the stance that my son was not worth even exploring the possibilities that were starting to emerge. I had many doors shut in my face, phone calls gone silent, and blank stares during that long year. It is the part of my journey with Autism I would choose not to relive again. As a mother, there is nothing more heart wrenching than when someone shuts the door of possibility right in front of your child.
All these memories have been stirred to the surface since I started reading Strange Son.
The title makes me shiver every time I pick up the book. Strange son? How could a mother choose such a title for her book about her son? I almost didn't put it on my birthday list, had I not heard that she also did a lot of research about Autism and was the driving force behind one of the largest Autism Groups, CAN (Cure Autism Now). As I read, I begin to understand her choice for the title. It is not a word that denotes seclusion, lower status in intelligence or perpetuates the stereotype that follows Autism everywhere, but rather, the reaction from the world to her son, the wall of denial that was built too tall to climb, to overcome, the strange circumstance that no one knew what to do with Autism everywhere in regards to research, schooling, health care, or in creating an atmosphere for success for these children. The strange world you are thrust into when your child is diagnosed with Autism. It is a third dimension, sometimes created by Autism itself, but mostly by the uneducated community that surrounds you.
So, those are my thoughts for now. I am only about 1/4 the way through and am hooked. I admire her drive and tenacity. I also am saddened by her sense of loss she feels with her son. I wonder if I could have kept hope for Gabe for so long had he never improved with ABA, Speech, outstanding therapists and the incredible bloggers that keep me sane everyday with letting me know I am not alone and neither is Gabe.
A couple things to remember when reading this book, the author's journey began almost 14 years ago. Her and her husband were alone in their journey. There wasn't an incredible group of Autism Bloggers, Yahoo groups (Yahoo started up around 1996 publicly), and the Internet was hard to navigate with little or no medical listings. Another aspect to consider, Autism was completely dismissed by the medical community. We are still being quieted by our doctors being told our fears are unwarranted, when in truth they just missed the blatant warning signs. Can you imagine if every doctor said and felt the same thing? That your child was mentally inferior with nothing of merit to contribute to this world? Children were still being sent to institutions. Special education and the public schools? I can't even imagine the atrocities.
So, with all that in mind, I applaud her. In fact, standing ovation. When there was no one, nothing for Dov, she made something. It may not have been the same thing we would choose today for our children diagnosed with Autism, although I can not imagine what she possibly did not do for her son, she did something where there was nothing. That to me is amazing.
