Wednesday, October 29, 2008
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.
Friday, October 17, 2008
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.
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.
Sunday, October 12, 2008
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.
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.
Thursday, October 9, 2008
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.
Tuesday, October 7, 2008
Friday, October 3, 2008
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.