It was a bad, bad week at Autism's Edges.
We are told by some autism advocates that we should never feel despair, nor wish we were dead, nor wish that we could hurdle ourselves and our sweet children from great heights to some sort of fantasized oblivion where, in our darkest moments, we might imagine that that there would be a place in the world, if not for us, for our inert bodies.
Yes, it has been a bad — very bad — week at Autism's Edges.
Oddly enough, it started with a note home from the school about the buses. There have been problems with the buses. Apparently the buses are not arriving to school on time, and by the middle of the week it was taking two hours for Sweet M's bus to travel thirty-two blocks coming home in the afternoon. Two hours — yes, two hours — to travel 32 blocks.
The buses that serve Sweet M's school also serve two other schools, one of which is near the UN. And George W. Bush, along with a whole host of presidential types from around the world were clogging up the tiny island of Manhattan with their motorcades, and blocked streets, and security check points. But that was not what the note was about.
The note was about the other schools served by the buses. About how those other schools serve children with neurological and emotional problems that cause them to have disturbing behaviors. About how "our kids" don't have those kinds of behaviors, and "our kids" are very very upset to see those behaviors. And about how all of us should write to the agency in charge of the buses to make sure that our children don't have to be bussed on the same buses as "those children" — you know, the ones with disturbing behaviors. You see, the kids at Sweet M's school are supposedly without any neurological or emotional issues. The kids at Sweet M's school are LD — not, horror or horrors, ED (emotionally disturbed) — as though the two were not intimately interconnected.
I read the note with a sinking feeling. Freud has a very useful construct to describe the phenomenon where members of an oppressed group direct their own aggression and hatred toward those who are almost exactly like themselves — and treat those who would be their natural allies with all the hatred and contempt that they themselves have experienced, often times ten. He calls this "the narcissism of minor differences." So the lighter skinned African-American may spurn the darker, and the green Irish and orange Irish collide, the person insecure in their own sexual identity ridicules the homosexual, and high-functioning and more impaired auties and their allies parse the differences, the distinctions, the nuances.
I knew that any letter home from school that made children with behavioral issues into the damaging and threatening Other did not bode well for Sweet M.
And sure enough, by the end of the day yesterday a series of ineptitudes of several varieties resulted in Sweet M having not one, but two, massive meltdowns at school.
We were told that she cannot come to school today as a consequence. She's suspended.
I protested that punishing her for behavior that is out of her control, and was precipitated at least in part by adult ineptitude, is like punishing a person for having a seizure — after you've forced them to stare at a strobe light.
They did not agree, so Sweet M stayed home, and instead of doing the remunerative work I need to do to support our fragile family, I called around in search of other schools — as if there were any that I haven't already seen.
So I am enraged, and I am outraged. It is perhaps fortunate that alternating between despair and fury renders me so exhausted that I feel confident that I am no danger to myself or others.
Of course the question remains: Is there any place in the world for my sweet (and sometimes sour) kid?
Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • speech-language disorders • parenting • education • special education