Friday, July 24, 2009

What? Hearing loss in people with RA.


Like I needed something else to worry about.

What? Huh?

Saturday, July 18, 2009

Hello Class. Nice to meet you. Please don’t kill me.

So, over the last year of sitting across the table from middle schoolers and saying "Say 'r'" and them saying "wa" and me having no idea how to fix it, I had an epiphany. I was meant to do speech language.
Although I'm not particularly gifted at speech, I love language and my whole academic career has been build on that – since 1995, I've been studying language in some form or another. What my particular weaknesses are as an authority figure (i.e. unable to manage large groups of kids) are mitigated the way the job is structured. It works for me health-wise as well – I can shuffle some groups around if I really can't make it to school or if my fatigue or my feet is making it harder for me to get to a room across the school on time. Time to go back to classes to be an SLP. It's a good feeling to approach a job not sure of what will happen and leave totally confident.

I loved it.

I had one augmentative communicator and one PECS user – well, he wasn't a PECS user until I got him. I knew I loved that sort of communication work. But what I really didn't expect was to love my boys with Asperger Syndrome and high functioning autism. But I did. I fascinated by their language. I had a blast making Superflex movies and playing eye contact games and helping them understand their IEPs.

So, I've been waiting all summer to see what school I'd be in. I heard that it was pretty much a given that I wouldn't be at the middle school, but I didn't internalize that. Of course I could convince them to leave me at the middle school. What would my kids do without me? Or really, what would I do without them?

There was talk about the high school. That would be fine too. I would move up with several of my kids and be there in a few years for the rest.

Two days ago, I was told it was the elementary school. And I was to be the special ed teacher.

I can't deny that I've suffered from classroom envy when I pass by some really cool teaching materials. But I usually get over classroom envy very quickly when I encounter kids in groups larger than 3 or 4. Everyone keeps congratulating me. (Which is how I found out. Nice.) I have a feeling of "Holy cow, Pinocchio; you're a real boy!" My mom is bragging about me. It feels good.

But I am sad. What am I going to do with my collection of Super Duper Phonology decks? And my speech bulletin board decorations?

And I have to work with people again, go by the team schedules, call parents, all of that stuff. Recess duty – dear god. I'll have recess duty. And I've already said what I think of resource in Missouri. It's not resource; it's a mosh-pit dumping ground.

But I got my class roster and I have 11-13 kids and not all will be there all of the time. Even at the end of last year, when a large large number of my kids had their speech minutes drastically reduced, I had twice that and felt blissfully unencumbered. I am in the strange position of having younger kids but ones with more mild disabilities than I'm used to.

I had a couple of kids that I'll really miss at the middle school. I really miss them all, but I am attached to a few. One guy cried and hugged me on the last day – crying is sort of his thing, but still. I never had anyone cry because I left before.

This will be good for me. I will have more respect for classroom teachers and more credibility. I just know how wrapped up I can get and I am afraid that I will not go back to speech. Aside from the small fortune invested in Fun Decks, which will be a big loss if I don't go back, I'm feeling like I've hit my stride, like I'm doing what I was meant to do. And I'm very distressed at leaving it.

But still… I have a classroom of my very own. Always as the speech implementer, I felt like I was someone's apprentice, the junior member of the team. Now I'm on the team.

And I'm still scared to death but excited as well.

Monday, July 13, 2009

Lupus? And Michael Jackson

Because I must blog about Michael Jackson, because it's apparently The Law of the Blogosphere ™ and because by listening to all his music again, I'm suddenly getting back parts of childhood and I'm really enjoying his music again (sad that this is what It took), I'm going to comment a little.

Michael Jackson was my introduction to homophobia. Sitting on the school bus, I was taught this rhyme:

I pledge allegiance to the flag

Michael Jackson is a f**

Pepsi Cola burnt him up

Now he's drinking 7-up

As a second or third grader, I knew this was somehow "wrong" but I didn't really know why. I still sadly enjoy the rhyme – for a slur, it has a really nice meter.

I remember other things, like hearing Michael Jackson had had hormone shots to make him sound like a woman. (Tenor was not a word in our vocabulary in rural Missouri.) It was common, even by second grade, to say things like "I like his music but I don't like him."

I realize now that this homophobia was an outgrowth of racism. This was rural Missouri. Michael Jackson may have not been the first black man on the radio, but he was the first black man whose posters appeared on the walls of the local white girls, the first who was bigger than life. That was threatening. In a world where I grew up knowing racist jokes and repeating them semi-innocently (I knew they were "bad" but I thought they were funny too) a black man idolized by white little (and big) girls was a threat, going back to the heart of old Southern stereotypes and fears – the black men are after our women and our women might like it. Better to cripple him, mock him, make him strange and meek and not really a man.

What you couldn't do, though, is deny how absolutely awesome his music was, even if pop music wasn't your thing. My dad, who grew up in the South and had much more of a legacy of racial attitudes to overcome than most people appreciate, even secretly admitted to Mom once that he liked "that one song." I think it was "The way you make me feel."

The Michael Jackson action figure eventually made his way into my younger sister's stable of Barbies. My older sister and I both moved on to more "mature" music – she went toward U2 and REM and I went toward heavy metal. He didn't become a joke to us – he was always sort of a joke, a society's way of crippling him. Eventually, we believed it.

Eventually the world believed it. Eventually, the press believed it. Eventually, he believed it. Maybe he always did believe it, I don't know. But by the time the child abuse cases came around, we were ready to believe it. We were ready to believe anything. He slept in an oxygen chamber, had a pet chimp, bought bones of dead people.

We believed anything. Except that he was sick – I mean really chronically ill. Vitaligo? What was that? We all knew he wanted to look white. That's all there was to it.

Now I'm finding out that he had lupus and that he received plaquinel shots. Wow. I think of my time of plaquinel and how my always-pale British skin became absolutely translucent and burned bright red in the slightest sun. I think of how blonde my hair became. I look at my senior pictures and my hair is golden, almost white. Plaquinel will do that. Did it make him so pale?

I don't know what happened to him at the end or why it happened. I'll find out, eventually, I guess, but that means I have to turn on cable news, and I refuse to do that.

Did he have lupus? Did he die of lupus? Or chronic pain from his burns? What a strange sad world when even your medical care is in the hands of yes men, when your doctors aren't able to give you medical advice without having to fight with the trappings of celebrity. Was he killed in his desperate attempt to finally get a good night's sleep? I'm narcoleptic and I understand that life-sucking fatigue-fog.

One man, for 40 years, embodied all of white America's fears and prejudices: he was the Other when it came to race, sexuality, and maybe even ability and disability, chronic illness and wellness. I had absolutely nothing in common with him, wasn't even that much of a fan, but am sad. When all this is over, sleep, fatigue, exhaustion, lupus, burns, chronic illness won't be mentioned. We consider those to be irrelevant facts – doesn't every celebrity have some sort of chronic illness their "doctor" treats them for? We'll talk about celebrity, maybe even race and sexuality fears that were projected onto Michael Jackson, but little will be said about illness. Because really, in some ways, illness is the last American shame. We like sick people but only when they dance bravely for us and are sick at home, with armies of private doctors. We like the Farrah Faucetts who struggle bravely against something that will either kill her or she will beat – a battle with a beginning and, sadly too, an end, not like something chronic that malingers. We don't understand that sickness has its own culture, its own struggle, one that may be equal to the other forces in this man's short life. When thinking about how hard he struggled, his lupus (if it turned out to be true that he had lupus), his burns, and his health will be thought of as some sort of character flaws brought on by celebrity and not something capable of being deadly in its own right.

Good bye Michael. I'm sorry.