Several years ago, as I was regaling Alexa's advocate with the story of some misadventure that came out of no where, when she was seemingly doing so well otherwise, the advocate said, "Oh, you got hit with the Autism Stick," and chuckled. The Autism Stick smacks you upside the head when things seem to be going well, catching you off guard. It's what happens when you get complacent, stray away from proven strategies, or just plain forget that things won't happen on a typical schedule and pattern for your person with autism. It reminds you that autism isn't something your child grows out of, it doesn't magically disappear - it takes sustained effort and coordination plus a lot of determination and courage on the part of your child/adult with autism.
Suffice it to say, we have been beaten and battered by the Autism Stick this year. I am certain that the winter craziness with cancelled classes, appointments, and support sessions due to snow did not help. But whatever the root cause, it's been painfully clear that Alexa continues to be a person with autism, and that we didn't have all of the stars and supports aligning appropriately.
Today, we had a positive appointment with the members of Team Alexa here on the west side of the Chesapeake (as opposed to the A Team on Maryland's Eastern Shore). We have steps to take, options to try. As we were driving out of the parking lot, Alexa and I were commenting on how thankful we were to have the resources we have - the therapists and doctors, the emotional supports, the insurance, and not least of all the financial resources to pay for it all. We were feeling thankful for each other - for being able to persevere as a family who has to deal with the special issues autism brings. In short, we were feeling pretty proud of ourselves. For the first time in months we thought "we got this."
Of course we couldn't leave well enough alone. Her Learner's Permit will expire in early June so we though we could knock that out today. This is when the Autism Stick does its best work - when you get cocky. Because, while Alexa planned for noise (ear plugs) and stress (hard candy to suck on) and I made sure we had all four (yes, FOUR), forms of documentation, neither of us was really prepared for the beaurocratic hell that is the Maryland MVA, for the need to now have medical sign off that the autism doesn't preclude her from driving, or from the misguided instructions that resulted in an unnecessary wait of 20+ minutes that ended with her scratching herself, stomping her feet, and in full on meltdown just before the law test. It was not pretty. For either of us. Seriously not my finest hour - I missed some clear warning signs and didn't intervene or pack it in when I should have. Lesson learned.
The up side - when we go back to finish the law test, she can make an appointment. We can schedule for earlier in the day, when she'll be fresher. And we have plotted our stress management strategies.
Often people look at those on the high functioning end of the Autism Spectrum and say things like "they look fine - what's the problem?" or "Bill Gates and Sheldon Cooper are doing just fine - I don't know what you are worrying about." I'd like those folks to have been with us today. Yes, I know, no one likes the MVA. But when's the last time it caused you so much discomfort, real actual discomfort, that scratching (hard) at yourself was the only option left to you?
Yes, eventually this too will pass, and some other unexpected problem will bring on the autism stick. And it will remind me of the courage and determination and strength that my daughter shows every day, of what comes together just right to make it possible for her to successfully interact with the world.
Maybe the Autism Stick isn't just a tool to beat us up when we let our guard down. Maybe it's really a reminder of all the work that goes into making the rest of the time look effortless.
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