Jim went to Philadelphia yesterday to give a talk to an Irish lawyers group (last week it was the Celtic Medical Society or some such he spoke at---I guess the book isn't titled On the Irish Waterfront for nothing). Charlie and I cooled our heals at home in Jersey, making our usual rounds: driving in different directions on the way home from school; walking 'round the neighborhood; burrowing (Charlie that is) through the refrigerator and cabinets for all available snacks (the New York Times's recent article on "snack time never ends" be darned----boy is hungry, boy eats); typing on my laptop (during which I pondered what Charlie might make of an iPad); gassing up the car so as not to run into the "time to drive to school and then mom to work and the orange 'gas tank is getting empty' light just went on!" problem; stopping at the little local supermarket that has become Charlie's preferred; one more walk in a howling wind (all this wintry walks are turning into an excellent excuse for me to get myself a nice new, and warm, hat); early dinner; early bedtime.
Another day of just what it's like around here.
Inbetween all that (and of course after Charlie was in bed) I read the myth of Demeter, goddess of agriculture, and her daughter Persephone in the Homeric Hymn to Demeter---the Greek myth about how the maiden Persephone is abducted by Hades, god of the Underworld, leading to Demeter falling into mourning her missing child and going in search of her, and letting the crops die and everything growing wither away. Demeter travels down to the Underworld to find Persephone only to learn that, as her daughter has eaten a few seeds of a pomegranate, she can only return to the world above for half the year. And so, it's said, do we have the seasons, spring and summer when Persephone is with her mother, who rejoices, and makes the crops and plants and flowers grow, and autumn and winter when Persephone joins Hades and Demeter withdraws in sorrow.
A couple of years ago when I first started blogging, I referred to this myth in seeking ways to describe how a parent can feel on learning that their child has been diagnosed with autism---that their child's been taken away and, even though the child returns, something is different, it's never the same.
While I think the myth does capture how a parent feels, I now find the comparison not so just and potentially perilous. Even before the Ransom Notes advertising campaign---in which autism and other childhood psychiatric disorders were portrayed as "kidnappers" who left "ransom notes" threatening dire, empty lives for the children they now had in their clutches---I've never thought that "one day I had a perfectly normal child and then autism came like a thief in the night and took him." The day before and the day after---all the days of his life---Charlie has been Charlie. The diagnosis (Charlie's is, and has always been, "autism") gave clarity in the form of a word that we could write on forms and say to "professionals" to get Charlie therapies, services, into programs.
Whenever I read about Demeter and Persephone, I still find it speaks to me about the love and bond between mother and child, and the terror of loss of each other; about the ache. I guess you could say I've made my views on "recovery from autism" and all of that pretty clear and I'm quite aware (aren't we all, at this point) of the vitriol that gets cast between those who are "one side" of this issue, and those who are "on the other," and those, too, who find themselves in the crossfire. But I do think that one thing that joins all of us parents together is that sometimes we just feel pretty bad, not because we're yearning for the "what if" of a child who's not autistic, but because we're human, things can get really really tough, we don't get enough sleep and just as we're sitting down to read a few pages in a book we come upon some mess needing immediate attention. We just feel bad like any parent who hates to see the child they love unhappy, and we feel it's our parental responsibility to take care of that child. Of our child.
So the news about that Dr. Andrew Wakefield has been found "irresponsible" over the MMR vaccine scare by the General Medical Council; that he "abused a position of trust as he researched a possible link between the MMR vaccine, bowel disease and autism in children" leaves me feeling sad and worn most of all. How much time have we (and I include myself) spent in exchanges about vaccines and autism and Dr. Wakefield himself, exchanges that have taken us far, far away from talking about actual individuals on the autism spectrum and their (in some cases) long-term, life-long needs for services and supports? How many frankly mean, cutting, things have we flung at each other? How did we let ourselves get so caught up in this controversy that, as it's gradually developing, indeed has less and less to do with autism?
Because all those parents who believed Dr. Wakefield and his theories about a "link" between vaccines and autism----because we all love our kids and, like Demeter, would travel to the ends of the earth to help them.
You don't need me to tell you that love is foolish, that love makes you proverbially blind, makes some things you might look back on and question yourself about.
Emily has a list of media and blog responses to the news about Dr. Wakefield and the GMC. (LB/RB of course already has a couple of posts and, on the other end of the spectrum on this issue, is AOA.) I suspect the divisions of belief, and the contentious exchanges, will continue. Certainly it would be nice if we could end the autism wars---but somehow it seems near-impossible to stop "looking in whatever direction we think most important at the moment," so that we "let our understanding of what binds us together atrophy."
Accordingly, while unable to resist an occasional dip into those more contentious waters, I'll be looking homeward most of all, and boyward. Because, this is what it's all about.