On Functioning Labels

This is a VERY important thing people need to know! My children wear the autism label, but the function labels are utterly useless…for one thing, functional in comparison to what? And second, if I were to find that standard and try to assess functioning, I would have to assess each task/function area separately, and probably reassess each 100x a day. I think she paints a very clear example of this.

ischemgeek

I had a post go wild on Tumblr, so I figured I’d cross-post it here since people seem to like it there. Because the point is important and apparently people think I made it clearly. But please do go read Alyssa’s post first since I think she did a better job than me.


Alyssa of Yes, That Too has already done this but I want to just to add an extra narrative backing up her point about Hillary and Rose.

Here’s a tale of two women:

Claire is in her mid-20s and has only lived on her own for eight months of her life, during which time she nearly set fire to her apartment on three different occasions. She has times where she is unable to speak, and even when speaking, she is unable to reliably modulate volume, tone and language to her audience. When stressed, she often resorts…

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Open your eyes.

There are so many small things I miss as being autism related, especially in my aspie son…so thanks for this lightbulb moment and passing it along

ischemgeek

One thing that’s always been a marvel to me about allistic people is that when they point at a specific thing, others can understand what they’re pointing at. Even if it’s something small and hard to notice.

I can’t do that.

When I was a kid, it used to aggravate my parents. Exchanges would go as follows:

Me: Where’s the [item]?
Mom: It’s over there. *points*
Me: *looks* *doesn’t see it* Where?
Mom: There. *points more emphatically*Me: *looks again* *still doesn’t see it* I don’t see it.
Mom: It’s right there! Open your eyes!
Me: They are open! I just don’t see it!

Or you could substitute “Open your eyes” with “You’d have better luck if you weren’t looking with your eyes closed,” both of which are expressions that it took me until yesterday to realize are not in fact accusations of groping about with my eyes shut but in…

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Everybody and their Frog: Parenting Autistic Children with Love and Acceptance

Great magazine and petition too 😉

Thirty Days of Autism

Screen shot 2014-04-13 at 8.10.42 PMParenting Autistic Children with Love and Acceptance has just published the first issue of a wonderful new magazine, and everybody is reading it!!

And it is not expensive.

In fact it is free, and you can get a copy to peruse and enjoy and share with others right here.

The magazine is an informative publication and a much-needed resource: “In this issue, you will read a lot about what acceptance really means. It is intentional, it is a learning process for most of us, and it is absolutely worth it because our Autistic children deserve nothing less.”

Screen shot 2014-04-13 at 8.48.03 PM Image from Parenting Autistic Children with Love and Acceptance Magazine

And c’mon… everybody and their Frog is reading it!!

KermitReadsPACLAMAG.jpgA final and far more serious note:

It has been announced that Sesame Street intends to partner with Autism Speaks – which is definitely not a positive move for reducing stigma for Autistic…

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My Son is so Behind…but is He? The Fundamental Problem with Assessments

Seems like at least once or twice a day throughout the multiple disability and autism groups I’m in, i hear some version of this…”we have testing/assessments coming up, I get so depressed by them, by learning how far behind lil Johnny is this time!” We get the joy and excitement of doing them a few times a year, and i always get a copy of the results. A few times a year those papers tell me right there in black and white that my son is floundering, that hes between 1-3 1/2 years behind where he “should” be….but is he? Imagine with me for a moment that you go to take a test at school, you’ve learned the information, you’re confident, sit down, look at the test it’s completely in German! What????? You know the information, but because you don’t speak or write German you fail it miserably. That test is going to make you appear as if you didn’t know anything about the subject.

Everyone gets so caught up in test and assessment scores. Parents of autistic kids are often devastated by their results (my aspie excelled at them until writing got involved). I think the underlying problem is they are assumed to be traveling more slowly down the standard developmental path…well duh their brains are wired differently. My contention is that theyre where they are supposed to be ON A TOTALLY DIFFERENT PATH so measuring against people on the standard path is completely pointless, bc they’re not going that particular direction! The two intersect and merge at different points, but are not the same. It’s our choice whether to keep ourselves and kids miserably pushing down the wrong path or embrace hopping over to the right one and cheering them on wherever it may lead.

Aware? Yup…educated? Not hardly

Most of my readers are fellow autism parents…but some aren’t and some just might click from the auto fb and twitter posts. So…for those of you it isn’t your life, and even autism parents try to think back…

Have you heard of autism? Are you “aware” it exists? I think a large majority of people would answer yes. So basically people are “aware” of autism.

What comes to mind when you contemplate the word autism? Screaming, empty shell, pain, grief, “locked away”, incapable of feeling empathy, or showing love? Marriages and lives ruined? Rain Man?

Or do you think of husbands, wives, college professors, college students, parents, authors, artists, actors and actresses, public speakers, and just everyday people? Autistics exist in these and pretty much every category out there. They are living, accomplishing, breaking down the walls built against them…pebble by pebble at times. Capable of anything when given support and TIME.

I have a new favorite quote from Emma at Emma’s Hope Book “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.” I got to know Emma first through her moms writing, and then, recently through her own. And lemme tell ya, it’s very hard for her to write, to communicate her thoughts…but when she does they pack a punch. There is a great list of blogs over there too (i have yet to figure out the art of the blog roll) by speaking, nonspeaking, aspie, and every autistic in between.

I’ll end this post with E’s autism acceptance shirt…created by Jess at A Diary of a Mom and tweaked a bit by yours truly…we are aware but far from educated.

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