Torrefaction

One good thing amidst the debt crisis crap

2011-08-02T01:20:35Z

comments

Why mildly disabled kids are really actually disabled, too

2011-06-13T17:45:56Z

A thought inspired by conversation on someone else's blog today - but it's a conversation I see come up over and over.

A kid like Charlie, in the US and in some other countries, can easly be slotted into the "not really disabled" social category, because his disability doesn't limit him very much.

This is because he is LEGALLY in the "actually yes really disabled" category, which means he has civil rights protection. And he's medically in the disabled category, which means insurance (or the school district) has to pay for his OT and PT. Therefore if he wants to play sports on a team at a publically-funded school? They will have to let him. Without civil rights protection, the coaches can put him on the bench, permanently. Without OT or PT to develop skills analogous to the two-handed kids, he might not enjoy sports in the first place.

Kids with dyslexia get extra time to take tests. Kids with ADHD or Autism Spectrum Disorders don't get expelled from school for behavioral problems--as long as it's diagnosed and they are put in that protected category and given legally-mandated supports. There's a long (long long) way to go for proper inclusion and access for everybody, but the law mandates that all kids can participate in school and the community. When I was a kid it wasn't like that, and plenty of families had a kid who just stayed home all day, or failed and failed and failed until they dropped out, or went off the rails trying to self-medicate.

The reason our mildly disabled kids can grow up feeling "not disabled" in this country now is because of lawmaking, lobbying, hard work and activism, much of it by their fellow disabled people, not because they are actually what society considers normal. I think it's important to remember that.

comments

YA fantasy with/about epilepsy?

2011-04-13T00:53:17Z

Help me, O flist! I'm wondering if there is a YA book out there that features epilepsy in a cool way--like "I have epilepsy and can also do magic and fly" as opposed to "I have epilepsy and am going to struggle with my self-identity as a disabled person for 140 pages, ultimately making a friend or two and finding acceptance." Not that the latter sort of book is bad, exactly, but it's probably not the right message for the young person I'm thinking of.

Other brain disorders that figure into YA SF/F in a cool way woukd also be good.

Rec me! Thanks in advance.

comments

Standardized testing, already a problem

2011-01-14T04:12:18Z

So, Charlie is 2 and a half, and is already falling behind on tests! Well, not exactly. His day care/school does the ASQ, which nowadays stands for Ages & Stages questionnaire but I think used to stand for Autism Spectrum Questionnaire? Anyway, it's a thing that parents or teachers fill out every 3 to 6 months or so (less frequently as he gets older) that asks questions about developmental milestones--gross motor, fine motor, verbal, social, etc. I have collected it when it was given and have even filled it in, but have not given it back to the school generally. This is because 1. we have him evaluated by doctors regularly, including at times with that same questionnaire, and we do therapy accordingly 2. It's not necessarily any of the school's goddamn business what his total medical profile is, particularly since we are not (yet) in the land of IEPs and special services, and if we ever are, it will be through our actual school district and not the day care, (which thus far has been very slightly faily about his disability, although great about his medical needs) and 3. (and most important) the ASQ is designed for children with normal morphology.

So this time his teacher did the evaluation--not just for him but for all the students in the class--and came up with "needs follow-up" (i.e. see your doctor about...) on gross motor, fine motor, and verbal. Now, we know he's delayed on verbal; we're in the "wait and see" stage, where he's catching up but might need a little therapy, or might not. So I think it's valid to flag that. For gross motor he mainly shows as "delayed" in things relating to balance; ok, fair enough, but I note there is not an "asymmetrical" option...anyway, ok, yeah, he's only been walking since May so I'd consider him delayed on gross motor, but the doc and the PT think he'll catch up on his own as his confidence grows.

For fine motor, I've always filled in "n/a" for most of the answers and not bothered to tally, because the questions MASSIVELY assume normal morphology. Stuff like "child can pass a small object from hand to hand, yes or no." Well NO of course. And "picks up a cup with both hands." NO. But he picks up a cup with his hand and the end of his short arm, and he tucks things under his short arm to carry them. He does not do really well putting lego bricks together, or scribbling on a piece of paper unless someone holds it for him. These are standard markers of fine motor skills but the question is not "can build a lego tower using only one hand," which is actually the required skill in his case. Some of the questions are less two-handy, like eating with a fork or spoon, but most of them are not.

His teacher went ahead and answered the questions exactly as asked--which is what she's required to do, and she was apologetic about it--so he now is rated with 15 out of 50 on fine motor. I would be happy to have a reliable way to tell if his fine motor skills are good for his age or if he actually is delayed, since he was significantly delayed with hand skills in his first year, and probably continues to be delayed now. But these questions are not the way to figure that out. I don't think the test should be redesigned, mind you, because it's a perfectly fine eval for the majority of kids. But the school should have alternative ways of assessing other kids - or just say, you know, "we skipped the fine motor skills section of this test because it's obviously stupid to ask these questions about Charlie; do you have an OT who could do an eval?"

Which, come to think of it, we do, although he hasn't seen her since he finally learned to walk. Maybe we'll get our doc to refer us for a little milestone testing. In the meantime: rargh! Stupid unhelpful test.

ETA: Since you've kindly read all this rantyness, you deserve a picture:

Charlie playing with his Xmas choo-choo. Mike put velcro sticky pads on the bottom of the remote and on the table, so Charlie can work the lever without having to hold the remote.

comments