I was talking to my husband last year,* and struck on the idea that raising a child with moderate autism was sort of like this: everyone went to the record store and got the same cd, but - for whatever reason - we picked up the extended version. The timing, the melody, the refrains, the vocals - they're all there - but remixed in parts. It's just taking us a little longer to get to the next track.
And my husband riffed that similarly, it's like a movie where everyone sees ALL the footage, even the deleted scenes... so it's not as neatly edited as most narratives tend to be. And there's probably some gratuitous extra language in our version. R rated, and butt-related.
I've often said that when it comes to Roman, we're more than a family: we're like a really small gang. Truly, he is the glue that binds us all, including my two *eye roll* teenagers. He's almost always in a good mood, and he lives practically perfectly in the present moment. (Unless he thinks you're inclined to toast up some bread for him in the near future. Then he's got plans.)
I love that quote by Mark Twain: "A man who carries a cat by the tail learns something he can learn in no other way." Equally true of autism.
Because having Roman in our family has made all of us more patient, more tolerant, and more happy. We marvel at the small but steady progress he makes. He reminds us to live simply, to value people and experiences over things, to be grateful for what he CAN do, and to be hopeful for what he WILL be able to do.
But rainbows and hydrangeas aside? (Spoiler alert.) Sometimes, it blows. A trip to the playground goes sideways and makes us feel society's bias, disapproval, and disdain for difference. Or you get double dope-smacked at the mall and look like a tool. <-- almost a self-inflicted wound! Those days can be painful, and make one wonder about the harm in day-drinking.
I'm listening to Ron Suskind's beautiful book about raising a son with autism - Life, Animated** - he likens these moments to watching kids play a game of musical chairs. Except your kid doesn't hear the music. Society's set-up. Or as George Orwell wrote, "all animals are equal, but some animals are more equal than others."
But that's parenthood- wanting to protect your kid from everyone else while simultaneously protecting your own sanity from your kid's omnipresence. All the while knowing that it is absolutely futile. Sometimes the only way you can catch a cat is by the tail.
So red pill or blue pill? Would I throw the kill switch on autism? Quoting (self-proclaimed) aspie writer Jennifer McIlwee Myers, no. But if there were a dimmer switch... well, maybe I'd use that every now and then.
* Even though we are married with 3 kids, I promise I have talked to him since...
** If this book is on your wish list, I highly recommend the audio version- it's read by the author, and is incredibly well done.