By Jill Escher
Where did all my kitchen rugs go? It’s 3.20 in the morning and as usual, I’m awake. Not by choice but because, like clockwork, my sweet, nonverbal 18 year-old son with autism woke at 3 and started running, some might say rampaging, around the house. Boom, clomp clomp, tap tap tap, whoosh door opens, slam door closes, ugh.
I pat around my nightstand, reluctantly find my glasses, and head downstairs, not knowing what mischief may have transpired over the past 20 minutes. These wee-hour melees can be a bit like a suspense scene in a not-very-scary horror movie. Open the door… what will we see… probably not a severed head… but….
And there it is. My kitchen rugs are gone.
Jonny’s sitting at the kitchen table with a big grin and four iPhone 3GS’s splayed out before him. Shredded parmesan, once neatly bagged in the still-open fridge, is strewn over the table and floor, as if some yellow snow had fallen from the light fixture. With a well chewed pink toothbrush he taps at his iPhones, all synced to that 1979 tune, My Sharona.
Well, I'm happy he's so happy, but... my half-awake head buzzes, “Where are my rugs rugs, rugs rugs rugs, where did they go go, go go go? My Sharona.”
Over our north neighbor’s fence? Over the east one, aka the Corner of No Return? In the hot tub? It’s now 3.25 a.m. and I’m not exactly in the mood to treasure hunt floor coverings. And I can't help but wonder, Oh great god of missing rugs and whatnot, what reverse jackpots will the chaos of autism bring today?
Just to illustrate how high this officially invisible toll of autism can be, a recent day at our home went like this. About $90 for a new sheet set to replace the otherwise perfect set he shredded (the 19th replacement of the year). A $120 iPad and iPhone repair bill. I do not exaggerate when I say that some weeks we’re a patient of Phone Doctor of San Jose every single day. Then add $240 for the housekeeper because I hardly have time for the Sisyphean task of cleaning up after my main man. In the late afternoon, add $225 for the handyman to replace the cracked casing of a door that had the misfortune to come between Jonny and his cherished iPhones. Finally, just as I looked forward to using them at the ice rink with my autistic daughter that evening, I found my new iPhone 7 earbuds torn into pieces, and poof! goes $29. In all, our daily autism bill can easily top $500.
To be abundantly clear, I don't blame my beloved son one bit. Not a speck of this Tasmanian Devilishness is his fault. You will not find a kinder, gentler, sweeter, more pure and affectionate soul on this planet. He deserves the Nobel Peace Prize just for being him. But, as with many others with autism, he was born with such scrambled or short-circuited brain wiring that he lives in a world of constant cognitive and sensory chaos. Literally a million dollars spent on therapies, and tens of thousands of mom and dad hours working on his skills, have barely made a dent. Through no fault of his own he is simply not endowed with meaningful neural pathways through which to learn by the usual routes of association or experience, or to organize and control himself. Blaming him for chewing on my piano would be like blaming someone with epilepsy for his seizures.
But understandable though it may be, no one can ignore a bill for material casualties easily exceeding $25,000 a year. If we counted all the child care, social services, schooling, therapeutics, and specialized camps and recreation, we’re talking an annual Autism Bill of many multiples of that. And that doesn't even encompass our Double Bill, as we have another child with nonverbal autism as well.
"For many families, the financial damage of autism can be devastating, even a one-way ticket to poverty. And the situation seems poised to get worse."
As I edit this blog I get a text from a friend. Her large autistic son just broke her bed, after recently breaking his own, which they had reinforced multiple times with heavy lumber and bolts, to no avail. Two beds dead. Two mattresses with mushed springs. Her Autism Bill of the day started with a whopper of about $2,000. Not to mention all the family's lost sleep and time she must devote to restoring habitability to her home.
Just before dawn, I spy my rugs over the north fence, alongside a pile of missing sheets and towels. Phew, no shopping today, just a retrieval mission. But then my gorgeous Jonny, skipping with his abundant energy and joy, darts into the front yard and yanks the rear windshield wiper off my car, breaking the arm. Ka-ching! And it’s only 6 a.m.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.