Just how does a “seasoned” autism mom spend her Autism Awareness Month? Glad you asked!
For the past few years one of my closest friends of mine and I had pretty much gone into hibernation for the entire month of April. She too has a son diagnosed with autism, but neither of us felt particularly inclined to participate in any “events” associated with a disorder we felt essentially destroyed our lives. Interestingly enough, she and I met on World Autism Day. Or was it April Fool’s Day? Seems I always find myself wishing my son’s diagnosis was a cruel prank, hence the source of confusion.
One year my girlfriend and I even went as far as spending World Autism Day at a spa, hoping to make it a tradition. We’d lock ourselves away from the depressing media and chat and soak until 12:01 a.m April 3 if need be.
I know what you are thinking. You can run but you cannot hide from autism. I get it, really! If you crunch the numbers, cowering in a steam room until I evaporate couldn’t possibly make up for the thousands and thousands of hours I’ve spent managing my son’s autism. Let’s see… between the therapies (duh), the behavior management, the bargaining, the avoiding of birthday parties, and the mood swings (mine) the time does add up quickly.
This year, with the encouragement of this same brave friend (and my husband’s depleting bank account) we decided to nix the spa and venture out. We decided that we’d change our Autism Awareness Month mantra from YES WE ARE AWARE, HELLO, MCFLY!, to we’re aware, and surviving (even if it’s “just barely squeaking by”). Hooray!
Autism Awareness Month was obviously not created as a glaring reminder that my family can’t leave the house without my autistic son’s ipod touch or a change of underwear. Or that my typical four year old is light years ahead of him intellectually.
It’s just that there are so damned many of us on this awful ride it had me thinking is the message of autism awareness month getting preached to the choir?
With all the press autism has gotten over the past few years (conveniently beginning promptly after my own son’s diagnosis….maddening!) would it be fair for me to say that a parent would have to be living in a hole to not be cognizant of the disorder? For better or for worse autism makes the news daily. Just what is it that the powers that be wished us all to be aware of? I know I just ended that sentence in a preposition, and I do promise to calm down.
So how was I going to survive each April’s metaphorical showers without shouting from the rooftops “YES I AM AWARE!!!!!!! Now leave me alone!”? First, I had to remind myself that promoting awareness isn’t just about advertising the need to recognize autism warning signs. Next came a conversation in front of the mirror about letting go of the pain and frustration I felt from not recognizing those warning signs in my own child. Had I actually felt jealously toward more recently diagnosed families who appeared more “on top of things” than I was? Come on now Kristi!
Also helpful was realizing that the month isn’t meant to be, nor should it be, catered to the particular “stage” I am in personally each April. Every child and every family deserves a crack at tackling autism (and the emotions attached) head on, using the ammo with which they feel comfortable. My “veteran” eye rolling at the thought of wearing blue was doing them no service.
More importantly? I should want to afford other families the chance to create (and freely and often alter) their own mantras. Without having to hear the cheers (or jeers) of my own.
This year, my girlfriend and I nixed the spa idea and attended Surfers for Autism instead. I admit the thought of hanging with tan, buff young men all day gave me the extra push I needed. And with zero expectation of running in to athletic single boys, we even made an appearance at the Autism Society of Broward County Mom’s Luncheon. We certainly stepped out (or maybe came out?) this year.
The result? We actually enjoyed ourselves. Ironically the occasions made us forget about autism for a few hours. Crazy, I know! I chalk it all up to being in the company of other great families, with whom we were able to skip all the explanations, excuses, and apologies. Keep in mind those apologies are often for our own behavior (chuckle)! No trying to Jedi-Mind Trick others into thinking my son’s PDD is a benign quality, then rushing off before they can Google the acronym on their smartphones. We could just “be,” and I probably don’t have to tell you what an enormous relief that was. Allowing myself to focus on my sunburn (ouch, dumb!) and blisters brought on by 4” heels (double ouch, but so worth it) made me feel alive.
Look out Autism Awareness Month 2012, I’m coming back for more! Would it still be too much to ask to change April to Autism SPAwareness Month? A girl can have it all, can’t she?