Monday, December 6, 2010

School update

Just a quick update from my team meeting at the school this morning. It was confirmed that the focus of Ben's class is life skills, independence and communication skills. This, apparently, is so that my son can be a "productive, working member of society." However, I don't think my son wants what they have in mind for future work -- packaging or sorting or assembling or whatever "piecemeal" work is.

They don't do academic skills. They "incorporate literacy" into things like teaching the students to read a recipe.

"Why does Ben need to read a recipe?" I asked. They stressed how critical this was to him making something to eat in the future. "He has the rest of his life to learn how to read a recipe," I said. "I'd like him to be expanding his world by being able to read something he's interested in." Like a Star Wars book.

Three years ago Ben was reading at a Grade 2 or 3 level and it makes more sense to me that they be teaching him reading skills to bring his reading level up. He loves books, but the only reading they do is 20 minutes of silent reading each day.

He has two periods in the morning -- gym and art appreciation (the latter doesn't make any sense because he has poor fine motor skills and it's not adapted). In the afternoon he has social skills (where they do cooking and food preparation) and math (where they work sorting things in boxes).

They kept coming back to him being "DD" (developmental disability) and a psychological report that was based on 40 minutes with Ben. "I place no limits on my son," I said.

Even the students with mild intellectual disability in the school don't typically get high school diplomas.
I've asked for the IPRC (placement review committee) to be reconvened so we can look at whether there's an alternate placement in the same school or elsewhere. But that probably won't happen until Feb. or March and we were told before that there were no options.
I met with a psychologist who saw Ben a few years ago and she told me he can still learn and there's no reason he can't be learning academic skills at his own level.
If they were to use his interests (e.g. unusual Star Wars characters and the computer) they could be building his reading, numeracy and keyboarding skills with something he's naturally interested in.
I don't know if this is the same in all life-skills schools, but there is never any homework. I look at how much practice my other son needs to master certain skills -- through homework and Kumon -- and it seems that students who are already at such a great disadvantage don't have the benefit of homework (yes, I'm surprised I'm saying that).
Filmmaker Dan Habib posted an interesting response about an alternate system of testing being developing in New Hampshire for students with disabilities who can't do standardized tests. It seems that the goal is that all students work on the high school curriculum, adapted to their needs. See the last comment under Dark clouds clearing.


ho w I wish they would use Floortime principles- ie start with the child's motivation -and then build on it on our kiddos

Just shaking my head Louise. They should know better and I suspect some of them actually do. It is very hard work to put together a program that meets the needs of diverse learners, they need to get on it.

Louise, reading this so pisses me off, I cannot imagine how you are dealing with it. It's completely wrong that he is not getting any academic work when he is capable of doing it...god, even with Sophie I do that sort of work to keep what skills she has. The "art appreciation" thing...OMG...this reminds me of the huge amounts of colouring they kept wanting Sophie to do in class, which used to set her arm into spasm. This is completely discriminatory...and in Toronto!! I thought things were better than that. I hope that somehow you fight this and win it for your guy. It's time like these when wealth would serve to get us lawyers to bash these people over their heads with reality.

The same thing happened to my sister. She is 23 and now does piece work in a factory for $4 per day!!!!!! Is that even legal??? She has had opportunities at other employers where they take her for a free "trial" basis, then fire her after their gov subsidies stop. This happens time and time again. It makes her feel like she is useless and taken advantage of. These agencies feel that she should be happy being able to volunteer. But she really wants to be paid and valued like everyone else. It's disgusting, discriminatory and frustrating.

Thank you everyone for your comments!

Anonymous -- your message is very concerning. Who organizes the kind of factory work that your sister does -- is it done through an agency that supports people with disabilities? Your sister's experience makes me sad and fearful for my son. I wonder what kind of legislation governs these work arrangments ($4 per day!)? Thank you for sharing!

Louise, yes she was placed through an agency that places young people with disabilities into jobs and volunteer opportunities. From what I understand, the employer applies for subsidies that generally last a few months. The trap is that then they drop the person after that runs out. This is horrible for the self-esteem of the young person who then feels used. The job she has now is in a factory where they sort products. If she is slow at it, she gets $4. If she does more, she'll get paid more - but it's unlikely as it takes her a while to do things. The subsidies are a good thing, but follow-up needs to be done to ensure they are being used properly. She has also worked at a movie theatre and a popular department store... same thing.

yes, yes, yes. i'm so glad you asked for the review committee. why can they not meet till feb or march? i'd push a bit on that one, if you feel you can.

can i come read with ben? it's kind of a hike from oregon, but it's one of my favorite things to do with kids.

Thank you Anonymous. This is very disturbing on many levels. Is the factory job supported by a government subsidy? Does your sister have a job coach with her? I'm not sure how it can be justified that it benefits a person to put in a day's work for $4. Why would the government not do evaluation and monitoring to ensure that businesses that apply for the subsidy are committed to having employees with disabilities? (vs. getting some free labour till the subsidy runs out). I know of businesses set up by and for people with disabilities where there are costs to have job coaches onsite that end up taking away from what the people with disabilities get paid. What you describe is shocking to me as as a parent and citizen. And I keep coming back to the idea that unless we, as parents, somehow create a meaningful job/business/life for our adult child with developmental disabilities, their future is bleak. It's not right that this rests so completely on our shoulders.

Thank you Claire -- how do you fight them? They've now asked for a new psychological assessment (I'm sure you see where this is going -- "but he can't possibly do anything more than life skills -- look how he scored"). I don't care my child's IQ is -- I want him educated!

Yes Elizabeth -- you are welcome to come and read anytime! :)

Thank you for your other comments. Re video -- today I asked the researcher who worked with us on an iPod with Proloquo2Go if we can get footage they took of Ben using it. I will think about other potential uses of video. Thanks! Great to hear from you and about your experience!

Anon I'm inclined to say it isnt legal. I dont know about Canada laws, but there is a law where I live saying all adults who work must be paid the minimum wage or employers get a fine or sued. I live in SE England.

(P.S I hate doing that captcha thing, its annoying. I'm legally blind and can not see. Cant you get rid of it Louise?)