by Mary on January 23, 2009
We met up with other parents last night at the J-man’s school. The AU teachers at his school hold get-togethers for us on the same nights as the rest of the school has something parent-related.
You know, it’s good to talk to people who KNOW what we’re dealing with. They don’t feel sorry for us; they don’t blame us; they understand. It’s hard to get that from parents of “normal” kids. We talked about serious things – and we talked about funny things. There was a LOT of laughter, especially with Tim being the only man in the room, as there was a reference to “snipping it off” which sent us into hysterics, but made Tim lock his knees together.
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by Tim on January 6, 2009
[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
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by Tim on November 20, 2008
I and half the autism blogosphere wrote a while back about Alex Barton’s horrible ordeal at school where he got voted out of his kindergarten classroom by his peers at the leading of his teacher. The idea – warped as it was beyond what the human brain should be capable of – apparently was to help him somehow understand that his behaviors were disruptive of the class and he needed to be shamed into learning to improve his behavior – since of course that’s so easy for an autistic child to do under the best of circumstances – or some asinine junk like that.
Raise your hand if you think anyone with two brain cells to rub together would think this is a helpful behavioral therapy technique for autistic children (or any child for that matter). That’s what I thought. You can read more about it on my previous post if you want.
Now fast forward to the present – Alex Barton’s teacher, Wendy Portillo, has now been suspended without pay from the school for one year. The local superintendent is asking the state Board of Education to revoke her teaching certificate during that year. Reports are that her tenure has been stripped such that she will only be able to get a year-to-year teaching contract when she returns. No criminal charges will be filed.
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