The word itself sounds crisp and almost pretty, a deliberate and careful motion to put something in a certain spot. I love words but I don’t like this one, despite its euphemistic connotation in the context of educating Jonah in a residential setting somewhere. Somewhere else. Somewhere Andy and I won’t be. And today is the dreaded meeting to decide about it.
He was doing so much better on the new dosage of meds, and then yesterday at school he fell apart again. Five attacks, lots of time on the scooter platform with his weighted blanket. It’s the worst timing there could be, for the teachers in his class will weigh in heavily on what to do here, and if he is getting such a low quality of education now that they’re simply managing his behaviors, I can understand a move toward residential education. Understand, but only intellectually. In my heart this is all unthinkable. An unimaginable move.
I harbor resentment for all the normalcy other children get to have, what with arguments over homework and setting the dinner table and who pushed who, all the while excitedly counting down the days til’ Christmas…and then I squelch the resentment by reminding myself that there really is no such thing as normalcy: normal is a dryer setting, I declare here after all, and pain and joy and suffering and hope and anguish are everywhere.
I feel guilt too, for what could I have done differently to change what has happened? What should and could I be doing now to effect a difference, in our lives, at Wildwood School like the parent volunteers, in the community, to advocate for better care and treatment of individuals with autism and other disabilities?
There are so many things I don’t know. So much over which I have no control. So much helplessness. What is going on in our boy’s heart? In his body, his brain? What does he wish he could tell us?
Are you in pain, sweet little boo? Are you frustrated because you want to speak volumes you cannot express?
Can I love the pain out of you? Hug the frustration away?
He lies on the table with his markers lined up next to him. He is looking out of the window with his little butt in the air, dressed in comfortable sweats, asking for grandma. His dependence and innocence are complete.
Fifty years ago he may have been hidden away in a back room somewhere. A few hundred years ago he may have been labeled “possessed” and burned at the stake.
Today he will be the focus of people who love him, who will work together to get him the best care and education possible.
But I’m really scared anyway.