The Minneapolis School Board did NOT Vote to approve changes to the autism program last night.

nothing-about-usKARE 11 reported it incorrectly and now it’s been picked up by the Star Tribune and AP, so even though KARE 11 has changed the story and say they will talk about it tonight on air the damage has been done.

Here’s what actually happened:

Those in charge of the autism program in MPS decided to move forward with changes that, in my opinion, would dilute autism services very drastically for kids coded Federal Level 1 or 2 with ‘milder forms of autism’ (a phrase I find hilarious. Arie was one of those kids and flipped desks and hit teachers and knocked over bookshelves. Nothing mild about that.).

They would also cause autism preschool class sizes to increase by 33%. That’s HUGE.

As of now, these changes are happening despite no notification to parents or students, or public discussion, or anything.

Parents have only learned of this through word of mouth, and we and a few of our kids descended en masse (along with some kick-ass people fighting cops in the schools, who appeared to receive no coverage at all. Is it because most of them were black and most of us were white?) on a School Board meeting to voice our desire to have a special session to talk about this.

That is it. That is all. No vote.

PBS documentary on life on the spectrum

PLEASE let this be good or at least decent!

A new documentary set to premiere on PBS takes a look at life with autism from the perspective of those with the developmental disorder.

The film, “Neurotypical,” looks at individuals with autism at different stages of life. It focuses on Violet, 4, who is struggling to communicate, a teenager named Nicholas who is shy and has trouble relating to girls and Paula, a wife and mother who received a diagnosis as an adult after reading about the condition. Read more.

On the supposed “death with dignity” movement, and the value of a disabled life

Whenever assisted suicide comes up amongst my friends and family, they are very pro-assisted suicide. I get angry and quiet and don’t have the energy to explain explain explain, which is unusual for me, but this topic is so vast and exhausting and sometimes I think that no one with a disability is in any position to see the medical industrial complex from my point of view because they have never been treated the way I have in a doctor’s office.

This essay by Rachel Cohen-Rottenberg about Amanda Baggs and the pressure the medical establishment is putting on her to turn down life-saving procedures and just die already gets at the heart of why I object to this. Please read it:

“I think that many people feel that they would rather die than to be treated as though they are worthless. And so they put forward legislation that will give them a way out. But they don’t realize that we can fight the idea that it’s better to be dead than ill or disabled — that we can react to it with outrage, and that we can create communities of support so that none of us ends up with our worst fears realized.”

http://www.disabilityandrepresentation.com/2013/04/06/amanda-baggs-the-pressure-to-die/

Helpless

Fifth grade is a time, books like Raising Cain tell me, that boys are figuring out what it means to be boys and eventually men. They are figuring this out in a seething cesspool of social jockeying, confusion, cruelty, and thoughtlessness.

And my small-for-his-age, glasses-wearing, underweight, anxious autistic kid is swimming in it.

I remember fifth grade well. I was a smart, filthy, angry child with a mouth on her. I fought dirty and wild and only when I really meant it; one or two tiny skirmishes and a lot of big talk at least taught most of the kids to give me a wide berth, if not embrace me as a friend. I also knew very basic elementary emotional manipulation: if a kid made fun of me for clothes that smelled like AmVets, I could snap back: ‘How do you know what AmVets smells like?’ Because I knew they were ashamed of being poor. If someone told me I was ugly, I knew to make fun of his oddly protruding ears.

AJ has none of these, er, talents.

And he is different. His movements are different; his vocabulary is different; the cadence of his words is different. His reactions. All different. And proving you are part of the mass group The Same means pointing out difference. Distancing yourself from it. Joining the huddle of Same by shoving Different aside.

And on top of everything else, he’s the smallest kid in the fifth grade.

“Everything with boys is about strength,” he tells me mournfully when I pick him up from school to hear, again, that some boy has hit him with a basketball in the head, torn up his origami masterpiece, thrown him against the lockers, told him to get away and told everyone not to touch him because he has the ‘AJ touch.’ “And I’m a wimp.”

“You aren’t a wimp,” I say automatically, uselessly.

“Oh yes, I am,” he says grimly, staring out of the window as I drive him home.

He has a kind, smart, compassionate, dedicated teacher who is working hard to put a stop to it — but no one can control every single moment in the hallways, on the playground, in gym class. We are doing our best to deal with the kids, to help AJ with his social skills (because he can really be a bastard himself, sometimes), and to help him to maintain his out-of-school friendships, but there is only so much we can do.

Some parts of parenting involve taking this tiny, delicate piece of your heart, tossing it in the shark tank, and anxiously waiting to see what happens.

I really hate those parts.