Saturday, October 04, 2008

Happy Birthday, Cousins!

The Cousins turned ten this week, so we went up to have a little birthday party with them. Cake, ice cream, playing around Uncle Lou and Aunt Nancy's yard, some presents, that sort of thing. It went very well- chalk another one into the "good day" column. Life is good.

One of the good things was not having to shadow Joey the whole day. He didn't always engage with the other boys, but Joey did manage to keep them in line-of-sight most of the time (and those other times, were mostly when he came inside and sat with me.) When he got tired, he sat under a tree with a notepad writing letters.

Dear Unclewy, Please hogable us. Love, the Couzzins and Joey and Andy.

We think the translation of that is "Dear Uncle Louie, Please hug all of us. Love the Cousins and Joey and Andy." Well, something to do with hugging, according to what we could figure out from Joey's answer to "what does this say?"

Dear Andy, I love you. I am so proud of you. I will see you lader. Love, Joey and the Couzzins.

Just a sampling. He also did some drawings, mostly of Blue and lions (not sure what the lions were all about).

Andy spent the day following his cousins around with a T-Rex puppet, roaring. They thought it was hilarious.

Gotta love the good days.

Friday, October 03, 2008

A Voice in the Darkness

As expected, about 4 o'clock this morning, Joey crept into our bed. He does this most nights, and then I end up in the recliner for the remainder of the night, because we only have a queen-size bed. We've tried a couple of times to break this nightly habit, but all such campaigns have only resulted in less sleep and still waking up with a boy in the bed.

Last night, I felt that familiar depression of a boy climbed up onto the bed, crawling across, and settling between me and JoeyAndyDad. He snuggled in, then draped his arm over me, and gave me a little squeeze.

And very, very quietly, I heard him say:

"Squishy squishy squishy."

These are the rewards of being a mom.

Update: Teacher Meetings

I met with Ms. A, but really didn't get much farther. The upshot is Joey is bored and needs to be challenged, so she is meeting with his case manager to figure out what to do.

See, special education is not set up to deal with gifted kids who have special needs. They are set up for physical disability and mental retardation. They are set up to slow down, take a slower pace to get to academic material, rather than set up new ways of communicating information and with children. The idea of a special ed gifted child is considered a contradiction in terms, a real paradox by people who have no idea what special ed- and by some folks who teach there. They are not trained to deal with a child whose challenges don't include the academics.

Joey's last teacher was a creative, dynamic lady who could deal with this sort of thing. She was a whiz at making lessons and activities fit a whole range of needs and expectations.

This lady is worried about Joey feeling "different" if she gives him different work. I can understand that problem, but the fat is, Joey is different. Maybe instead of hiding it from him, we should embrace it, and help him to embrace it. Give him the challenge. Make his school work relevant to him. Is it a different worksheet from the person next to you? Sure it is. Can you accept the challenge, Joey? How about this extra work? Or better yet, extra fun?

Right now, Ms. A is handling it by having Joey hep other students. He is therefore forced to interact with other kids (she doesn't allow him to just do their work). No wonder he's been saying he wants to be a teacher when he grows up. It's an OK idea, it gives Joey the challenge of social skills that he does need, but Joey isn't progressing in the academics. I remember being bored in school. Boredom leads to all sorts of problems- including social ones.

So we are working on it. I did make sure certain things got noted, such as the cafeteria situation being dangerous- you can't just leave my kid to flounder with a change in schedule. I don't really care that you went over the change with your other students that morning- you have to be sure Joey not only gets told what is coming, but if it is a major change, you have to guide him through it- actively. She just comes across as an OK teacher, doing an OK job, and so Joey is just doing OK with her. What can anyone expect?

Wednesday, October 01, 2008

In which Jenny McCarthy puts up my blood pressure

Yes, I was an idiot and watched the segment. No, I'm not linking to it. I think it is enough to quote:

"Without a doubt in my mind, I believe vaccinations triggered Evan's autism."
"When you really think about it, the reason why [the AAP, the CDC, and vaccination companies are reluctant to link autism and vaccines] is because there is such a huge business in pharmaceuticals."
"People are also dying from vaccinations. Evan, my son, died in front of me for two minutes. So you ask any mother in the autism community if we'll take the flu, the measles, over autism any frickin' day of the week. So I think they need to wake up and stop hurting our kids."

I think I'll just take this last challenge. I'm a mother in the autism community. Hi, Ms. McCarthy. Guess what?

I'll take autism any day of the week, and twice on Tuesday, over measles, mumps, rubella, pertussis, chicken pox, meningitis, hepatitis A, hepatitis B, diptheria, tetanus, typhoid, influenza, pneumonia, tuberculosis, or polio. A lot more people have died from these diseases- any one of them- than from vaccination (all of them). The number of deaths reliably traced to a reaction from a vaccine is so low, giving an honest stat is considered impossible (and folks, they think a stat of "severe adverse reaction" is 1/100,000 doses- and have no problem providing that stat.) Is it one in a million? So in the US, about 300 people a year? (Between 1990 and 1992, there was only one reported death plausibly linked to a vaccine.) Did you know that influenza alone kills about 2000 people is the US each year?

I'll take autism over the flu any frickin' day of the week, Ms. McCarthy. Know why? Because autism doesn't kill people. And my autistic child is a beautiful, wonderful, loving child. Every autistic person I have met has been a beautiful, wonderful human being- even those severely effected, who cannot talk, who have trouble responding and coping with the world around them. I'll take that living human being over a dead one any day of the week. Proper vaccination prevents death and disability. It does not cause autism.

Vaccinate your kids. Do it properly. Or keep your kid away from mine until you get them properly vaccinated. (For information about who should NOT be vaccinated, click here.)

Tuesday, September 30, 2008

Boy Rewards

You wanted to know how the Boy Rewards Sticker Program campaign was going, right?
To be honest, it's going OK. They didn't earn enough stickers to go to Chuck E. Cheese last month, so this month it was a bit of a relief that they were able to go. They have a lot of new rides at our Chuck E. Cheese, so it was very exciting.
They ordered the pizza themselves, sausage with extra cheese, please! Then they came to get their tokens from me, one at a time, and would run off in eager glee to find some new adventure until the pizza came.

Then they would come, take a bite of pizza, get a token, and run off in eager glee...
They played a few rounds of air hockey. They liked scoring- on themselves. They would deliberately knock the puck into their own goal and laugh hysterically.
Some of the other patrons were quite amused. I grew up with an air hockey table in my basement. I can't play pool, but I play some mean air hockey. Looks like we need to get the old table dusted off, waxed up, and blowing some air!

When they ran out of tokens, they went up into the tubes for while. We only had one sketchy moment when a small child started screaming in the tubes, and the noise was too much for Andy with all the echo. HE came down for a few minutes and ate a few extra bites of pizza.
I knew it was time to go home when I caught them doing this (remember, they were out of tokens!) This is a game that has cool graphics that make you feel like you're moving around tight corners and stuff, kind of a fake roller-coaster. They were watching the previews for the game, over and over and over and over...

So we picked out our prizes (Joey got a Chuck E. Cheese toy, Andy got a piece of candy) and went home, two happy boys, ready to start another sticker-winning month!

Monday, September 29, 2008

Equal Members

The way current special education law is written and interpreted, parents are supposed to be "equal members" in a child's IEP team. That means that a parent is expected to participate in developing a child's IEP, and their opinions are supposed to be counted as much as any other member of the team.

And the more I get into developing IEPs, and dealing with schools, and looking at regulations- especially the new regulations being written in Virginia- the more I think this is wrong.

By making a parent "just another committee member", the parent is outnumbered in every committee they walk into. When I walk into an IEP meeting, I am, at best, outnumbered 3:1 in favor of the school. Often it is more like 6:1. I've had it be as high as 8:1 (administrator, student services director, special education teacher, regular education teacher, autism coordinator/specialist, psychologist, occupational therapist, and speech therapist to me), and I haven't had any monster IEP meetings I've heard legends of. No matter how hard a parent advocates for the child, they are under the weight of school personnel consensus.

The fact is, as a parent, I am the one legally responsible for my child's education, rearing, safety, and health. At the end of the day, the year, the childhood, it is me, the parent, who must bear responsibility for the decisions of this ever-changing and often-hostile committee; and my child who bears the consequences of every failure along the way. In every meeting, my child is guaranteed only one voice in his defense and favor. Everyone else has a very basic conflict of interest- they are employed by the school, with a budget and a whole school population to consider. Only I (right now- until Joey can self-advocate) have only Joey to think about.

So why am I only just another member? Shouldn't I at the very least have 50% say? In all the complaints from schools about parents who want basically the ability to veto, I must say, damn straight I want veto power. This is my child we're talking about.

We have been fortunate this year and last year. Joey's current case manager is a person who really does care about Joey as a person, and is interested in getting him the support he needs to be successful. She considers what he needs individually, and not based on what other children in the program might or might not need. Unfortunately, we know from experience that it doesn't always work that way. What will his case manager be like when we move to the upper elementary? Will we revert to the attitude of the preschool, "we need to consider the kids with more needs- your child is too high-functioning to get support"?

No one knows Joey like I know Joey. I should think that even if this "committee of equals" must be, my voice would be the likes of Athens: a first among equals.

By Popular Demand

Boys painting up their stick puppets.

Stick puppet success!

Joey has his handy-dandy notebook.

Note to mom: you are loved.

Sunday, September 28, 2008

A small note

Since school started, every Friday, I have put a little note in Joey's lunchbox. I write a new one every week, but the basics are, "Dear Joey, I love you. I hope you like your lunch. Love, Mommy." Nothing has been said about these notes, and Joey isn't saying much about school these days (hence our current string of meetings with teachers). I just put them in because it gives him something to read, I miss him, and I want him to know I am thinking about him even when he is in school. But really, I haven't given them too much thought from Joey's point of view.

I'm working today. When I work, I am shut upstairs with my computer, the laundry, and some snacks, and emerge around five o'clock. On my breaks i change the beds, flip laundry, and eat. It isn't very exciting.

I forgot to bring up my lunch and take my meds this morning, so during my break I hot-footed it down the stairs to find boys preparing for lunch. Joey has been in the habit of carrying notebooks and crayons around with him, so I didn't think much of it when he seized my grocery list pad and a pen and started writing, taking little note of me rummaging through the freezer for a bowl of something-that-needs-to-get-eaten. I was already headed up the stairs, having stolen a kiss atop his busy head, when he came running to hand me the pad, "Mom! Mom! Look what I wrote!"

I took the pad from him, and he beamed as I read it:

"Dear Mommy, I love you. I love you, too. Love, Joey."

Would it be terrible to have it framed?