One Day… You’ll Understand…
“Mom, are you going to sell this one for at least five dollars?” That had been the question from my ten-year-old daughter as I put the finishing touches on this – my third book - in just two years.
“No… I have to give it away – again – there are too many families that need this information”, I replied. Each time, I had started to write a book, I had said to her: “Well… maybe I could sell this one…” – and each time, I had changed my mind and decided to make my books available online – in full - for free - to all persons with loved ones suffering from autism.
“Well… how about for two dollars, mom? Can’t you sell it for just two dollars?”, she had asked.
“No… not even for two dollars… some day… you’ll understand”, I replied.
“Well… what about for just one dollar… or just one quarter… can’t you at least get a quarter for it? Isn’t this stuff worth at least a quarter?”
“Anika, if someone had this information when we first found out Zachary had autism – and that information could explain so much, wouldn’t you have wanted someone to share it wish us? … If I decided to sell this book that would mean I have to look for a publisher… and that can take a long time… I can’t wait and look for a publisher… that takes valuable time away from families that need this information to help their kids… I have to give it away so that we can help as many kids as possible… as quickly as possible… do you understand now?”
“Well…ya… I know mom… well…ok… then, the next book… promise me you’ll at least sell that one for one dollar…”.
Anika had always been so understanding and giving throughout our family’s journey with autism, but now, more than anything, she wanted to have a farm and a horse and had started saving her money in hopes of soon – just maybe – being able to realize her dream.
For the past year and a half, Anika had seen me get up very early to write three books – only to end up giving them away to families of children with autism. Each time, she had hoped “this book” would help her to finally get that farm and horse.
Later, I would tell my husband about the conversation I had with my daughter. He smiled as he heard me re-cap the conversation for him.
“Last night, she asked me how old you had to be to work”, he said.
We both chuckled.
Over the last year, I had often laughed with my husband about my “new concept”. “I’m going to get rich giving it all away”, I would say.
But, my riches were not measured in “net worth”, but rather in those things that only a parent could understand.
If there was one thing I had found very comforting in my journey with autism, it certainly had been the fact that so many parents were now – like me – pouring their lives into looking for answers for their children with autism! Parents had been a significant driving force behind “breaking the code” and “putting pieces in place” in this puzzle known as “autism” that had ripped apart so many families – psychologically, emotionally, financially and unfortunately, often physically as well!
Only in putting the pieces of the autism puzzle in place could parents truly begin to put their shattered lives back in place too! I knew I was not alone in my search for answers – and that, as I, too, continued in my efforts to “Breaking The Code: Putting Pieces In Place!” that this would help motivate others to join in this effort also. Parents had become a huge research databank, interacting closely with one another – either online or in person – a databank that provided understanding and support. Work done by parents was now being looked at by those in science – at least those who had the sense to listen – the sense to realize that parents could provide so, so many answers – to so much. Clearly, parents were indeed providing a helping hand to the many scientists who, clearly, could not stay abreast of the many, many issues involved in this puzzle. It was truly impossible for any one person or small group of persons to put all the pieces in place – but with thousands now looking for answers - that provided for science a fantastic opportunity – a fantastic, previously not available “research arm” – an amazing databank of knowledge - simply waiting to be tapped.
Some parents had strong science background – but many of us did not. Yet, even though our thoughts in “how the pieces fit together” were perhaps not 100% accurate – we were at least attempting to understand the pieces and put them in place. If the hundreds and hundreds of hours spent in research by each parent of child with autism who was committed to understanding the pieces, led to even only one new piece being put in place, surely, that had to be of value for so many. A parent’s comment – a parent’s observations – a parent’s research… potentially, so truly, valuable to our understanding of these disorders. There was no denying that the autism parent community was becoming a very well-informed community, and with ever increasing rates of autism, I had no doubt that this desire to do research and understand the puzzle in the parent community was only starting to produce the many, many fruits I knew would come from the harvesting of the massive efforts currently going on as more and more parents joined into efforts at “Breaking The Code: Putting Pieces In Place!”
What I had not realized, however, was that in “Breaking The Code: Putting Pieces In Place” – for autism – the first domino to understanding so many other disorders could also be released in order to potentially topple many other puzzles as well.
The autistic child – once the forgotten child – now the key to so much!