Jennifer Cook O'Toole wearing her GRASP 'Distinguished Spectrumite Medal'!
By Jennifer Cook O’Toole, author of the book, AsperKids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome. Visit Jennifer’s website at: asperkids.com
You’ve probably heard the saying, “When life hands you lemons, make lemonade.” That always seemed a bit flippant to me. Like someone at Hallmark needed a cute little “chin up” message, and this is what they came up with. But when real life gets really messy, no one appreciates patronizing sentiment. Optimism, yes. But realistic optimism. Maybe life hands you melons instead, and it turns out you’re dyslexic. Or maybe, you really ought to squeeze that lemon into some Corona, laugh in spite of it all, and take a siesta.
This week, I got seriously (and unexpectedly) squirted with lemons.
A few months ago, I learned that I was to receive the coveted Distinguished Spectrumite Medal (DSM) from the Global and Regional Asperger Syndrome Partnership (GRASP), the world’s largest Asperger’s support and educational organization. In the company of giants in the worlds of psychology, advocacy, policy-making and social networking, I was to be recognized not (only) for my writing or speaking or consulting — but (tear-jerker) for being a shining example of extraordinary parenting. Of how being a diagnosed Aspie has — far from inhibiting emotional or social growth — enriched a marriage, lifted self-awareness and informed the power and perspective with which I raise my own three Asperkids. It was a very public declaration by Michael John Carley and the entire GRASP Board that the diagnosis is far beyond valid — it is valued.
AND it got better from there. The event was to be held at a gala in New York City (read: trip and getting gussied up — two things that NEVER happen to me anymore!) on the very SAME NIGHT that my first book, Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome would be released! AND the cosmic fabulosity got even more fabulous! The world-famous JKP author, Dr. Liane Holliday Willey (who wrote the forward to my book and has recently offered to be my mentor in this journey – riddling me with insanely amazing compliments and faith), was going to be receiving the SAME AWARD!
Time for a perspective break, I thought, to keep centered and focused in the middle of such hope and energy. So, last week, I took a few moments amidst the choas of preparing and packing for three Asperkids, an Asperhubbie and my Asperself and escaped to my garden. A little bit of pruning, a little bit of digging and sunshine, and the earth seemed to be literally grounding me in its firm grasp. Only it did a little too good a job. Somehow, I managed to get a bit of poson ivy – which quickly developed into a lot of poison ivy, and then into an additional allergic reaction to the adhesive bandages I’d used. My peace and calm was fast dissipating into two Emergency Room visits for steroid shots and lotions and a whole lot of itchy discomfort.
But the day to leave arrived anyway, and off we flew – yours truly trying to keep things in check with antihistimines and creams…by the day before the event, my sensitive redhead’s skin had apparently decided it was time to officially FREAK OUT. The reaction went systemic, riddling me with 400 patches of raw poison ivy rash plus a chemical burn all over my torso from the lotions I’d been told to use. Only one hour before “time to get gussied,” I was in another ER being told there was nothing more they could do – it was just a matter of time until the steroids finally kicked in.
And here was the “life would like to present you with said crate of lemons” moment. For about 10 minutes, I cried. Hard. And I don’t cry. I was mad and sad and just plum ticked off at the unfairness. One chance to get dressed up. To meet Liane. To meet everyone at GRASP. And instead of enjoying the accolade, I was an itchy, burning mess. Couldn’t anything just go easily, ever? This wasn’t fair.
While I wallowed, my Aspergirl suddenly came up to me and placed her small hand on my (unmussed) foot. “Mommy,” she said. “May I come with you tonight?” She’d been uninterested before, and I don’t know what changed for her exactly, but that changed it all for me. Thea-tah. Costumes. Make-up. I was back in the days of my life when the show must go on, and it must be the authentic and in-the-moment and matter.
So on went the eyeliner and heels. I styled her hair and straightened my husband’s tie. And, although the 45 minute trip to the event took over two hours and I missed an interview while sitting in the Lincoln Tunnel under miles of river water…we made it. And never in one room have I ever felt the “yes” of why we all were doing the work we do.
There were young Aspies asking about their own book ideas, adults apologizing profusely if they “accidentally touched you inappropriately” (a wrist tap!) or interrupted your thought. They were using scripts a bit awkwardly, but they used them – and were lovely people. There were world-reknowned psychiatrists whose work will determine the evolution of the term “Aspergers,” and a dad-runner who’d trekked the entire Chilean desert to raise money for GRASP and kids like his own. There was the beautiful, brilliant Liane Holliday Willey (in the flesh!) with her gorgeous daughter (my little girl was totally in love with her nail polish)…and in the middle of it all, there was me.
And so when it was my turn to receive my medal, I brought my little Asperkid up to the podium with me. I hadn’t known I was going to be asked to speak, but the words came easily (as they are wont to do). Life does hand us lemons. Certainly, for those of who are and who love Aspies, we get more than our fair share of pucker power. And we should be allowed, for a few minutes now and again, to cry or pout or say, “No fair!” But then the show MUST go on. Life must go on. Some days, it’s more performance than others – but always, always, we can choose to laugh. And I did. I told my itchy story of misery, of stomping my foot in my own little temper tantrum a few hours earlier, and of choosing, instead, to do what Aspies do everyday. To be uncomfortable, to laugh at the “are you kidding me?” moments, and to never, ever miss the chance to look around us and be totally inspired by the lives we get to share.
“Don’t ever forget,” I implored them, rubbing my little girl’s head, and seeing the amazing honorees around me, “that the different perspective we bring to the world is a gift – just like these Asperkids themselves.” And I looked down into my daughter’s big eyes. This medal was for me, yes (and the ribbon was scratching my poison ivy like crazy!), but seeing the pride and inclusion and inspiration in her little eyes, I couldn’t help but imagine her future. And I couldn’t help but laugh.
Copyright © Jessica Kingsley Publishers 2012.