Today, the eyes of the world are supposed to turn toward autism. Autism Speaks actually uses the word 'celebrate' in connection with its Light It Up Blue campaign, which draws participation from notable landmarks like the Great Pyramids of Egypt, the Sydney Opera House, and even Reunion Tower in my former home of Dallas, Texas.
The pictures look pretty, if you like symbolic gestures. The use of the word 'celebrate' in connection with an epidemic disturbs me. We're now at 1 in 88 -- or 1 in 50 schoolchildren, according to a recent study. The kids we're celebrating are going to get awfully expensive once they start aging out of the school system.
Does that mean we don't celebrate our beloved Leah? Quite the opposite. We celebrate who she is in spite of her autism. A couple of weeks ago, she was poked and prodded at a clinic at Kennedy Krieger, told what she could eat and when, and stayed still for blood draws even as the techs muttered things like 'tough stick.' Leah is my hero.
People with autism can be some of the most uniquely gifted individuals around. I will happily celebrate a kid's perfect pitch. I have applauded and been genuinely in awe of a couple of students who, when given a date (past or future), can tell you what day of the week it falls on. I can think of a couple more who will be graduating from sought-after magnet programs in our local school district. I am thrilled to watch them advocate for themselves. People with their gifts are often the ones you'll see representing autism during all of the awareness events.
Their achievements are celebration-worthy, but they only tell a fraction of the story. True autism awareness means looking past the blue buildings and thinking about what life might be like for people across the spectrum. Trust me, we are aware of autism in our house every single day.
We were aware of autism during our California vacation this week, when one of the Phineas and Ferb dance parties at Disneyland did not go off as scheduled. Other park visitors were too. During later shows (we were front and center for all of them), Phineas and Ferb themselves were quite aware, as Leah edged closer and closer to them with every song. Thankfully they -- and the accompanying Fireside Girls -- treated Leah with good humor and compassion. At the end of that day we were aware again, when we had to leave the park rather abruptly, because Leah was done for the day. We know the consequences of pushing her too hard, so we listened when she said she was done, even though we had to 'disappear' without a proper goodbye to some very old, cherished friends.
My sister and her family were aware a couple of times during our visit this week, when Leah woke around 2:00 am and decided it was the right time to play the piano. Sometimes parents don't get much sleep when they're trying to safeguard the rest of others.
Not long after we get back, we'll be in a conference room again for our next round of school system warfare. I'm pretty sure we've raised some awareness among our Facebook friends with our IEP-related status updates. This next round should be the decisive one. The overarching theme: Schools can be spectacularly ill-equipped to work with ASD kids. Districts will make tremendous efforts to avoid admitting that's true, until it becomes painfully obvious to everyone that their efforts are a lot like putting lipstick on a pig. By then, a lot of time has been lost.
Amid all of this awareness, we work hard to have hope. Sometimes it's easy. The contentment on Leah's face as we ride the ferris wheel on Santa Monica Pier and her excitement as her feet touch the Pacific Ocean remind us that she has the same capacity to enjoy her life as the rest of us do. Those are the moments we celebrate. Not Leah's autism, but the moments we see through it to the beautiful soul inside.
If you want to honor families with autism this month -- or any other, because facing autism is definitely a 365-day proposition -- please consider a donation to an organization that helps families. Since 2008, I have been a chapter coordinator for Talk About Curing Autism (whose founder, my friend Lisa Ackerman, also blogged about 'celebrating' autism). I give TACA my time because their resources go where they're needed most -- toward supporting families. Our family's annual fundraising page is online, and includes a written update and a video. Please pay us a virtual visit, and help us honor Leah -- the person, not the diagnosis.
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