Susan's Blog

Tuesday, October 13, 2015

That thing with feathers

Recently a friend added me to a Facebook group and at first I sighed and thought, “Not another one.” This morning, though, I needed something to read and I was too lazy to look at the odd little book I’m reading. I sunk my lips into the foamy first coffee of the day and started to read. And there it was, mothers posting about sending their autistic child to a residential placement for the first time. I saw questions about teens not yet toilet-trained — one of those worries that stings (and probably shocks some of you), but that you can still articulate. Other parents talked about their lack of income, having given up jobs to take care of their child at home — for as long as they possibly could keep them. This particular concern was smeared with stinking shitty guilt because she felt a little selfish to be worrying about that, too.

But this wasn’t even the bottom yet. How much was left unsaid — that’s the part that cuts. As deep as the grave. It is still with me, the chill of having to let go; to allow your child fade into the fog. He becomes distant; he has to. And so many will say to you, “That’s the way it’s supposed to be.”

Yes, but no. Of course, children grow and leave for new experiences, and they learn how to fend for themselves. But do ours? Do our severely autistic children — including our verbal but severely autistic children — ever learn to really fly straight and safe?  Perhaps they hop on the ground, or are lifted sometimes by a particularly good, skilled teacher or caregiver. Then they fly, alight on a branch, and you think, “Ah. At last. Thank God.”

Yes, but no. For the Mother Bird hovers nearby, maintaining her nest. Eyeing the sky, listening to the air. Never going too far away. For she’s learned that they fall off the branch, or like my Nat, they may stay there and tweet so softly, and look at all the other birds getting their own worms, chasing, mating. And still he stays.

You want to puke it hurts so bad sometimes, knowing you could not do this last thing for him. This perfect, sweet being that grew from a tiny lima bean into a fat healthy baby. He could have had the world. If only you knew how to get it for him. Some will say, “No one gets the world.” Or “You did your best.”

Yes, but no. Some do get the world. You did do your best. But you could not do it alone, and the others who try to help don’t even do it as well as you. You can’t blame yourself, you can’t blame them, you can’t blame autism, you can’t shake your fist at the gods. You just have to live with it and keep your bird’s eye sharply focused for as long as you can, on his potential, and you keep hoping, that thing with feathers.




I wish I could take the hurt away, my dear.

— added by Shelly Senator on Tuesday, October 13, 2015 at 10:10 am

Susan, you said all the things that I have been feeling these last few weeks. Watching all my friends kids go off to college- to fly – and my daughter is still here. You found the words to what I have been feeling.
It’s a mixed bag of emotions lately and I’m still sorting them out, and
hoping, still hoping.

— added by Cris on Thursday, October 15, 2015 at 8:44 pm

Susan that is so powerful. You are amazing. I hope that piece makes it into a book someday. I am sorry to miss you Wednesday night but glad to see you are speaking about housing.

— added by Karen Mariscal on Monday, October 19, 2015 at 3:21 pm

Boom. I hear you, Susan. Having a kid with special needs will always be a, well I’ll just say it, a wicked pisser. That’s why we need to find the joy wherever we can. Your go-to list of things that cheer you always seems so much healthier than mine, so how about you have some chocolate, and I go for a long walk?

— added by Lisa Richardson on Tuesday, October 20, 2015 at 11:31 am