I’m feeling guilty. It is Autism Awareness month, and I’ve done nothing. I haven’t changed my Facebook profile picture to a puzzle piece. I haven’t changed my status update to preach awareness or acceptance—though I certainly appreciate those who have.
I’m not sure why I’ve been so uncharacteristically silent this time. I guess I figure that anyone who is my friend, virtual or otherwise, is overwhelmingly aware of our status as a family affected by autism.
Evan was diagnosed with Autism on March 27, 2007. The first ever World Autism Awareness day was six days later, kicking off the activities of Autism Awareness month. Quite literally, as the world first became aware of autism, so did we. It was a strange way to get acquainted with this crazy new aspect of our lives. I will never forget those first few hours and days after the diagnosis—the strange combination of feeling simultaneously hurt to the core, yet strangely numb—staring at the television as talk show after talk show revealed this horrible, scary world that we had stumbled into. The parents on Larry King or The View crying over their broken dreams for their children; the video footage of children struggling with the smallest of tasks. And knowing that everyone we knew was learning these details about our new life at the same moment we were made it all too real, too fast, too soon.
We were exposed, vulnerable—having a gigantic, painful bandaid ripped off in front of the world. I remember very vividly the belief that I would never lose that feeling of pain, of total horror and sadness and terror. I thought anyone who said that the feeling would pass was either a liar or a lunatic.
But, against all odds, pass it did. And now we live our day-to-day lives much like anyone else; caught up in the routine of bus stops, homework, swimming lessons, and dance class. We focus less on the horror of it and more on the reality. And that reality, however weird it gets, seems increasingly normal. Like any family, we try to plan a trip to Disney World with a dizzying array of books and options and guides…and then we increase the books and confusion by 50% when we consider how to handle the trip with an autistic child. Like any family, we look forward to the neighborhood block party, but we rely far more than the other families do on the network of neighbors and friends to help ‘keep an eye out’ in order to be certain that Evan stays safely within range. Like any mother does in mid-spring, I try to plan a summer that will keep a proper balance of free time, playdates, vacations, and day camps for all three kids. I just have to make sure to work those things around and between Evan’s therapy schedule and his summer schooling.
However, I’d be lying if I said that the reality of autism lies solely in the logistical headaches. Every week brings with it a new ‘oh shit’ moment or two. But some strange mixture of experience, resilience, denial, and a kick-ass support system usually works to help us through the most harrowing moments. And if all else fails, we get through the day with equal parts coffee, chocolate, and cheap cabernet.
Still, I struggle with what I think “awareness” should mean to me at this point, four years into our dance with autism. Looking beyond the obvious answers—letting friends and family know about autism, making sure to educate the babysitter and the neighborhood—where are we? What sort of awareness do we need?
We need you to be aware when you vote. Know that autistic children and adults are recipients of medical assistance programs and beneficiaries of state and local programs. Know that your school district is legally required to educate special needs children, and ask questions of your school administrators regarding how they will do this. The answers will affect not just my special needs child, but your typical one, as well.
You should also be aware of autism when you are speaking to your own children. Know that they will likely encounter classmates on the autism spectrum—teach them what it means in ways they will understand. There are books in the library and on amazon.com that can help with that; one of my favorites is the Autism Acceptance Book.
You should be aware that autism affects the whole family, and that the other kids in the family are often most affected; that having a sibling who will throw a fit for no apparent reason can make the most well-adjusted child into a bit of a stress case.
You should be aware that most families who are dealing with autism are imperfect and messy and loving, just like yours. We are not saints. We have no more patience than anybody else. We make lots of really good decisions and some really bad ones. We are not idiots for trying the newest approach or diet; nor are we uninformed if we don’t. We will fight like crazy for our kids, except for those days when we just can’t fight anymore, and on those days we go for a run, eat too much ice cream, ignore the outside world, or go to bed and try again tomorrow.
As we have in the past, our family will walk again this year in Autism Speaks’ Walk Now for Autism in Philadelphia on September 24 under the team name Evan’s Elves. It is an uplifting day for us, a day of joy and hope and support. We are always thrilled to give back to the organization that does so much for families like ours, and we appreciate those of you who have helped in the past and who choose to walk with us.
For me, awareness also means being aware of those who don’t have autism—those around us who regularly make every day life that much more bearable, normal, and enjoyable. Those who make what we do –and what our children accomplish—so very possible. And to you, I say thank you.