Wednesday, January 16, 2013

Looking for Mary Poppins...

There are so many things I want to post about this week, but true to form I’m writing about what is presently on my mind.  It’s time to select a new au pair for Ryan and this always gives me pairs are exchange students from other countries who come for a year to watch your children and do the cultural exchange thing.  So far we’ve been very lucky with Ryan’s au pairs and they have all adored him, but I believe it does take a special person to commit to a year of caring for an autistic child, sight unseen.

Ryan is a peach—he isn’t aggressive and he is a loving little boy.  But I know that autistic people are often stereotyped as being violent, and frankly, strange.  It hurts my heart that someone could feel this way about my little boy. 

But I know in all honesty that I would have been that person—before Ryan…before I knew that autistic people were just people with autism.  Before I realized that many of the behaviors we associate with autism that seem odd, are in fact caused by physical pain that cannot be verbally expressed.  Before I knew that doctors know very little about autism, and don’t much care to learn, that the medical establishment thinks odd behaviors and postures are just what “they” do. 

Hands over ears--I recognize this!
It is precisely because most people know very little about autism and think these children cannot improve or even recover—medical doctors included—that I do what I do…blog, advocate for autism insurance reform, work with a non-profit to bring autism specialists to our islands…and I know somehow, someday I will achieve my goal of building an autism medical center here in Hawaii.  Our children have a special need because of Hawaii’s geographic isolation.

Autism Research and Education Center in day we'll have one in Hawaii!!   

But I also know that I do what I do solely because of Ryan.  It would not have occurred to me prior to his diagnosis to involve myself to such a degree for any cause.  He changed me in a profound way and I am eternally grateful for that.  I am not thankful he has autism, make no mistake, but he instilled in me the drive to make things better for all people with autism.  

So as I look over applications, wondering who will be the next young woman to pop into our lives, I am amazed at how many of these young people are interested in working with children just like Ryan.  And not because they have a special needs child in their lives, but because even at their tender ages, they realize how it enriches the soul to do something for others. 

I only wish I had learned this sooner…

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