What's the deal?

Anybody else think it's a strange that a single network (CBS) has two prime time shows (11th Hour and Numbers) on two consecutive nights (Thursday and Friday) where the main guest character is autistic? I just noticed this as I was watching adds last night. I hadn't been searching the information out and I haven't seen anything on other blogs. Is autism the flavor of the month? Why didn't anyone tell me?

Visibility is great and all, and I have no idea what these stories will be about, but I'm not really up for being inundated about the "tragedy" of autism. My kid's day to day life, or for that matter our family's life, is not a tragedy. There's a lot of unique, quirkiness that could make for interesting stories. Maybe that will be the theme of these stories. I guess I'll try to watch (even though these are shows I've never or seldom seen), just to have a first hand opinion. Hopefully this won't piss me off.

The debate and special education

Admittedly it was the last question of the last debate, but finally there's some talk about education in the presidential debates. And they even talked about autism and special education! Maybe I already had my mind made up, but McCain said nothing to give me pause, while Obama continued to say what I wanted to hear.

I first got put off when McCain wanted to say his ticket was the one that could speak up for special needs kids because his running mate has a child with Downs Syndrome. Sorry, that's not enough to be given a blank check to speak for me or my autistic child. I find myself way-annoyed with quite a few autie-parents who feel like they can speak for me. We're not a uniform crowd. And to imply every parent of a special needs kid knows just what I'm going through is insulting. Pandering is the word that comes to mind.

And then he segued into autism and he really lost me. Another politician who thinks supporting autistics is all about a cure and wiping out autism while at the same time talking about the tragedy of our kids. Yuck! Just because you've read the 1 in 150 statistic about autism doesn't mean that you get my vote for mentioning autism while never showing any such concern when there were bills before you. I'm not sure what to make of "the American people opening up their wallets", but I can't imagine that means that autistic kids will be guaranteed meaningful, inclusive education.

Finally, holding up an infant at rally after rally, as Ms. Palin does, is dehumanizing to Trig and disturbing to me. I don't hide my kid's disability in shame, but I also don't use it as some sort of card that lets me get into a club. I have no idea why any parent of a Down's child feels energized by these displays. But, as I said, special needs parents are not a very uniform group.

And what did Obama say that gave me hope? He said that the federal government would need to provide funding for educational mandates. He said that he agreed with the idea that our schools must provide education for the disabled, but that without the funding this was an unfair burden for our schools. And he said he supported charter schools, but not vouchers for private education. Pretty much 100% in line with my feelings. I wish he could have had the time to talk about autism, but what he did say I liked. On his website, here, his position on disabilities is about respect, inclusion and support. Again, he's 100% in line with my feelings.

Can't ask for much more than that.

The high school challenge

The transition to high school continues to be a challenge for both the HSS (high school student) and me. It's not the fit of the school. In fact, the HSS seems to be glowing about the course content and the fellow student in classes. The problems are more related to the amount of responsibility that these kids are supposed to take on and inversely the lack of any way that I can figure out how to support/help the HSS in growing into this responsibility.

A couple of examples:

• I've tried informally emailing a teacher with an idea of how a 504 plan that had worked in one school might be transition into the new school. Definitely a non-confrontational email saying that I wanted the HSS to learn to take responsibility, but maybe we could help? No response. I asked the HSS to talk to the teacher and it seemed clear to me that the teacher wanted to work this out with the student and felt my input wasn't needed.
• This PSAT day was bewildering for me. Some schools were giving it to 100% of the students, ours was not giving it to 9th graders who were supposed to stay home for the morning. This information was given out in one handout that somehow the HSS didn't get or lost. Nothing on the website besides "10/15 is PSAT day". No newsletter. The BCPSS calendar very clearly states early release days for teacher conferences and for HS mid-terms and finals. Nothing about PSATs listed there.

I know that eventually the HSS will need to be way more organized, but right now we aren't there. I guess that means that I've got to figure out how give support - I've got no clue on how to at the moment, beyond trying to talk to other parents at the school more often. It's a learning experience for both of us.

What should a "good involved parent" do?

OK, here's my dilemma. I've got a kid who's been without a teacher in a core class for at least half of the seven weeks school has been in session. That means for several weeks in a row they've been doing "sub work", which as far as I can tell means doing homework at school. On one hand I really want my kid to learn in this class both for the current work and for the work that will come in the future that is based on what they should have learned. On the other hand I understand the problems of staffing and the need to be flexible and supportive of staff that has personal/health issues. I am hesitant to call up the school and complain, because I understand that there's a very fine line between involved parent and overbearing one.

This doesn't seem to be an isolated occurrence in BCPSS schools. Between the three kids I'd say that one of them has a long term substitute every year or two. Staffing is difficult and people's lives are complicated, so I guess this is to be expected, but it seems like this adds up to a lot of wasted time in school.

So what's the right thing for me to do? The kid isn't complaining - given that there's is much less work going on that's not surprising. Eventually I suppose there will be an actual teacher in this subject, but honestly I don't know when. I guess I could call just to find out if they know the answer to that.

Update 10/23/08

As of this week there's a new teacher. I ended up not calling the school since I wasn't sure what was happening. I'm afraid that there will be a lot of catching up to do, but the word from the HSS is that the new teacher is "cool", so I'll be optimistic that they will learn what they should this year.

On the spectrum

Last week I posted about being told there were three types of autistic kids, and that knowing which type they were you knew how to deal with them. I've already expressed how annoying I found that.

Yesterday, I filled out a form where I had to check one of two boxes to describe my special child. The idea was if you were autistic you were either - "Asperger’s (high functioning)" or "Low functioning". For those who don't know, Asperger’s is a diagnosis on the autism spectrum characterized by no language delays, but lots of socialization delays/deficits. My kid has very limited expressive language so Asperger’s is wrong, but there is no way I'd say "low functioning". As far as I'm concerned low functioning gives people an excuse to not try to engage with an autistic person. The thinking goes, if they're low functioning there's much intellegence. There are a lot of people who prove this to be wrong (check out this blog). I'd never label my kid as "low functioning", so I checked other and wrote what I could in a text limited box.

I'm not a person who sees much meaning in luck and patterns, but I think if the same issue comes up repeatedly in your life you need to state a position that lets you deal with it in a consistent fashion. Here is mine: We need to abolish these little boxes that we're supposed to sort our autistic children into. I hate this low functioning / high functioning dichotomy. I refuse to sign on to there being three types of autism (true autism, atypical autism and Asperger’s). Life, and especially the autism spectrum, is much more about shades of grey. My preference would be to say autistic or not and if you need more data than that expect at least a couple of sentences. I think we, as parents of autistic kids, do them a disservice when we label them with one or two words (especially high or low functioning), because people have an image of what that means and almost always it's way off base.

So, my kid's on the spectrum. If you want to know more than that expect a long answer.

Exit strategy

I forced myself to watch the presidential debates tonight. Generally these debates makes me crazy - I've already made up my mind and I can't imagine anything being said that would change my opinion. I felt obliged to watch though, mainly because I wanted to be able to get all the jokes on the Saturday Night Live parody. In watching I've made a decision. If McCain wins I'm moving myself and my family to France. Drastic? yes. Silly? probably. But in the end it's the only way I think I could deal with the shame I would feel in being American, the only way I could think of to totally disassociate myself from the US and everything American.

Donors Choose

I like DonorsChoose.org. The projects are small and personal and I feel a direct connection with the students and teachers of the projects that I've supported. There's a blogger's challenge at Donor's Choose that I've decided to support. If you look at the right sidebar of this blog you'll see a widget that should take you a page of BCPSS projects that I've selected. Give it a look. If you don't like the projects I've selected, pick your own, but I encourage you to give to Baltimore's schools.

Ya learn something new everyday

So, guess what I learned at the last IEP I went to. There are three types of autism! Who knew? And all this time they've been talking about a spectrum. Hopefully the dripping sarcasm comes across, because this kind of crap really ticks me off.

This statement was from a supposed expert who's had training. That has got to make you ask what sort of bozos are giving training. I started asking said expert what the three types were (black, white and oriental, or overweight, underweight and average or perhaps something more cryptic like red, green or blue?), but when he/she said they couldn't remember I figured I'd better drop the subject quick before I got mad and brought the meeting to a screeching halt. As prevalent as autism is you'd think that BCPSS could have some half-way decent training. And what do you want to bet that they paid good money for some supposed expert to yammer on about all sorts of outdated and disproved ideas about autism? Honestly, that kind of misinformation is worse than no training at all.

I don't want to give the impression that the meeting went badly. There was a lot of open and honest conversation. That was pretty refreshing. No bombshells were dropped - that was what kept me from getting a good sleep the night before. There were some creative solutions to problems offered. All in all, a pretty good IEP meeting. And the above mentioned expert came late and left early, another big plus for me.