This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). CHOP is an Autism Speaks Autism Treatment Network site. Kim is also the author of a blog about her two children with autism at autismmommytherapist.wordpress.com.
This year is the ninth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.
The great thing is though, the rest of the world is now too.
In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders. I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.” I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.
But I’ve never spoken about one entity that helped us get to that peaceful place. And that entity would be Autism Speaks.
Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor. One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live. Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since. It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.
Needless to say, our gratitude toward Autism Speaks began that day.
We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track. We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.
His momma needs her shut-eye too.
Autism Speaks has helped us financially too. Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia. During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt. Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.
Autism is expensive. Having coverage for necessary therapies is invaluable.
And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family. I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public. I am certain some of that comprehension came from Autism Speaks global approach.
So this year, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys. We have our struggles here still, and I anticipate we always will. But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born. I am grateful to Autism Speaks for helping this family get to a place of peace.
And my wish for you is that you get there too.