Autism is costly in all senses of the word. The psychic and psychological, the emotional and the physical, toll--the ache and the heartbreak--add up and wear us down fast.
And then there's the matter of what it costs, literally, numerically, in terms of doctor's office co-pay and take-out-my-cheque-book-and-pay-the-bill. And that's not counting the hidden costs fellow Autismland sojourner MothersVox has noted.
Of course, we'd pay two and three and ten times over to help Charlie. This boy is worth double his weight in gold and just to hear him say "wait eat fries" as he did spontaneously tonight is worth a couple of months' salary.
These hidden and evident costs of autism stand out all the more because it is likely that, while we intend for Charlie to have a job when he is an adult, that job is probably not going to be coming with a big paycheck. In the monetary sphere, raising a child with a disability entails giving a lot more than you'll probably receive back from him, and that he'll ever be able to repay, in a dollar sense.
It has been theorized by the anthropologist Marcel Mauss that, in the exchanging of a gift, there are three clear obligations: (1) the obligation to give; (2) the obligation to receive; and (3) the obligation to repay. According to this classification of giving and of exchange, the parent of an autistic child has a lot of (1), while (2) and (3) are big question marks and if not outright zeros.
If it's affection and love I'm looking for as my Charlie-payback, I do reap a goldmine everyday. Granted, this is because I have learned to convert Charlie-currency into said affection and love. Charlie can repeat "I love you Dad" and "t'anks, Mommy" clear as day but we often prompt these phrases, especially if we want to hear him say them spoken clearly. Sitting beside my little boy on the couch tonight, I gave him a big hug and leaned my head into his and I could see the corners of his mouth smiling and he did not move away, and those tiny almost non-gestures were worth a surfeit of gold coins.
The exchange rate in Autismland is more than a bit lopsided. To make these quick currency conversions into Charlie-pence (or kronas, or euros, or rupees, or ren min bi), I have had to take several crash courses in a strange and curious economics, a mathematics in which I'm not always sure a point isn't a line or a curve, a physics in which string theory is pretty much proven and a chemistry in which the Periodic Table reads better backwards, upside-down, and through the looking-glass. I've had to learn a new grammar without my reliable Indo-European declensions and conjugations, a writing system lacking an alphabet or a syllabary or ideograms, and that goes neither left-to-right or right-to-left, but is total zigzag. The fee alone for this elementary Autismland 101 course has been exorbitant and stretch onto infinity.
And yet, I think, more and more, that this is a fair exchange. Raising a child with autism can really skew more than your perspective on the world, of politics, the cost of living, a peaceful evening. If we put mega-effort and multi-billionaire-Donald Trumpian effort into Charlie's education, so be it. I only know, how I melt to hear the clear words he uttered on his own today.
"Wait eat fries!"
"Kristy photos, Mommy I want!"
"Ahhhhhhhh. AHHHHHHHHH!" Charlie imitated me at the doctor this morning after a 40-minutes wait with several sick, coughing children in the waiting room.
"Mike, yes!" With sparkles eyes on hearing his ABA therapist was coming this afternoon.
"Fold da bankett! Towel on. Care-wots, more care-wots Mommy."
"Water! Chew tube. Stayin shower, yes." All to the tune of "Little April Showers" and a bit of "Amazing Grace."
"Giff!" Charlie hands back to me an empty blue bowl, from which he has just eaten a green apple while studying a pile of old photos. In this exchange, "give" means "here it is, Mom"--it being the bowl I had (as it might seem) given to Charlie with more in it (a green apple) than when he returned it to me.
An empty bowl accompanied by spontaneous language.
In Autismland, that's fair trade. That's the gift that--more than any arts and crafts picture frames or snowmen or potted plants a teacher and an aide prompted him to make--Charlie gives us on his own, gold smeltered from flesh, sweat, blood, spit, and tears (our own mixed in).