March 22nd, 2000… the date I had first come to realize that my son had autism. That night - it seemed so long ago - I had stayed up late researching autism in an attempt to prove my husband wrong - a husband who, along with his sister, had started to suspect our son had autism. Time was truly amazing in how it worked in memory formation. Some things that happened twenty years ago seemed like just yesterday, yet, in other instances, things that had happened only a few years ago seemed like so, so very, very, very, long ago.
As difficult as the last three years had been, they had also been rewarding. I was finally getting my son back and that was something I now hoped for all families of children with autism. Back then - I had so despaired – facing such a huge unknown. Now, I had more hope then ever for Zachary, because I finally understood him. Would he recover completely? No. I knew that – there was no doubt in my mind that Zachary had actual brain damage. Could he get much better – absolutely!
I knew there were organizations “looking for a cure”… but, by now, I knew there would be “no cure”. In my opinion, that was but a deception – and the offering of a false hope to families. There would be no pill or process or procedure that would “cure” Zachary – and I knew that. A “cure” implied there was something you could somehow “fix”. But, there was so much wrong with these children, in terms of overall brain processing, their metabolism, their immune system, etc., that by now, the realities of autism had set in a long, long time ago for me. There would be no “magic cure” to brain damage – and damage had very much been documented in these children. All I could do now was to understand “how” Zachary’s brain worked in order to best help him. Although I knew there would be “no cure” for Zachary, I also knew he had come such a long way – and I had no doubt he could go much, much further still. Each and every day showed me that much greater achievements were now possible for Zachary.
Three years… I had come to learn so much in three years. This was now the fourth book on I sat down to write on my family’s journey in order to help other families understand “autism”. My sister-in-law, Christine, had always been such a pillar for me. Christine had also learned so many things from the “school of hard knocks” – the world of a mother living daily - with autism. Given Andrew was older, I had been given the opportunity to see a little of “what to expect down the road” via Christine’s experiences with Andrew and that had been a huge blessing in so many instances. It was because of that – the tremendous help that could come in knowing “what to expect” – that I had so wanted to share our family’s journey with autism with other families. Life with autism was so very difficult that the wheel should not be reinvented over and over and over again. All families should not have to learn everything “the hard way”, and as such, if my family’s journey could help another family – another child with autism – then, to me, it was well worth the effort to sit down and share our story.
I knew all too well the pain involved in learning your child had autism – that stabbing feeling in your chest that made you feel as though you were going to die as the realization set in that you could potentially, slowly and painfully lose your child to his own world – forever. So many families were now facing autism. So many families were now looking for help – looking for answers. There was barely time to grieve when you were the parent of an autistic child. Indeed, you had to literally “hit the ground running”… there was so much to do… so much to learn as parents attempted to beat the clock and help their children as much as they could - as early as they could. Only the parent of a child with autism could possibly understand the pain of having a child facing an entire life with autism. Only the parent of a child with autism could possibly understand the hope that came with knowing that something could be done to help so many of these children get out of “their world” and back into a world that included mom and/or dad, a sister and/or brother, a grandma and/or grampa.
The road certainly was long – of that, there was no doubt – but it certainly could also be very, very rewarding. Each “I love you, mom”, each hug, each word, each glance, each everything – no matter how small – was now so very cherished. Nothing was taken for granted any more. What a very long three years it had been… a long, grueling, draining, yet, so rewarding, three years. Back then, there had been such desperation – but now, there was such hope and so much joy.
As I looked back, there was no denying that the initial “breaking through the shell” had been so key in getting Zachary back. Sure, he still had a lot to overcome, but at least, now, he was part of my world again and that was what I hoped for so many other families who had children with autism. As I thought back about “what had worked for Zachary”, so much now made sense to me when it came to Zachary’s development – especially his language development and his ability to communicate and it was this area I specifically wanted to address in this text – communication – taking a look at not only what had worked “for us” but also a look at where to go from here based on what I had now learned over the last three years.