Monday, July 29, 2002

July 29-August 2

JULY 29, 2002

My daughter was disco dancing in the supermarket yesterday. It was fascinating and terrifying. The way her hips moved! The arm motions! The confidence! The attitude! All it takes is some old '70s tune like "Car Wash" to hit the PA system and my little girl turns into Britney Spears. I think she may have been a little confused when I told her that was wonderful and she should never, ever do it again.

Later that night she watched "Gotta Kick It Up," the new Disney Channel movie (debuted: Friday; watched so far: 3 times) about a high school dance team that goes from inept to inspired in a little under two hours, and sure enough, as she was getting ready for bed, there she was with the moves again, shimmying around her room, shaking those hips, cocking that head, throwing back those shoulders, thrusting out that chest, smiling that smile, all in a way that makes me want to put a padlock on the door and homeschool her until she's 20. How do 12-year-olds learn to move like that? How do you make them stop?

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JULY 30, 2002

Rarely do I have cause to thank or praise any facet of the fashion industry, but I have to say that the newest trend in athletic shoes is an absolute boon and blessing to parents of kids with special needs, and makes me inclined to forgive all manner of platform sandals and stiletto pumps. The trend I'm talking about is the laceless sneaker; be it velcro-ed, zippered or slip-on, it represents freedom from shoe-tying and a chance at self-reliance for my fine-motor-challenged son. With the current variety and hipness of this fasten-friendly footwear, kids who can't tie aren't stigmatized by having to wear lace-up alternatives -- they're positively happening.

Now, theoretically, my son does know how to tie his shoes. His teacher assures me it's so, and sent home the classroom commendation to prove it. But I've never seen it, and frankly, with the clock ticking and time to leave in the mornings fast approaching, I'm not about to take the patient time needed to walk him through it. If the laceless trend holds, I may never have to. Tying your shoes is, like, so five minutes ago. Lace-free is the future.

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JULY 31, 2002

Parents of kids with sensory integration problems -- and I'm sure I'm not the only one -- are always searching for that magical tool that will help us connect with our kiddos and bring great therapeutic advantages. Whether it's a surgical scrub brush, a trampoline, a chewy tube, a massager, a pencil grip, a squeeze toy, a seat cushion, a weighted vest ... we know there's something out there that will make all the difference, and we're going to find it, alright. And when we do, it's a complete triumph of parenting perseverence, and all our investigative hours are justified.

But then... has anybody else had the experience of being TOO successful in this area? Finding something the child likes or needs so much that it begins to take over everything? I'm guessing brushing may fall into this category for some; if it helps your child, you can't not do it, but every two hours? Forever? Yeesh. In our case, the Tool of Magical Effect has been a body sock, a purple Lycra bag about the size of my son with a Velcro-sealed slit down the front so that he can crawl in, close up, and have some nice sensory deprivation, some nice pushing his joints against a resistive surface, some nice games with Mama.

Games with Mama... he's great at coming up with purple bag games for Mama to play. Mama is a pirate who sneaks up on him with the purple bag, captures him and threatens to throw him in the brig; Mama is a mama bird leaning some weight on her little egg until it hatches (though Lycra bags, unlike eggshells, allow the little bird to come out and go back in again repeated times, to mama bird's chagrin); Mama is a mama bear using a boy-stuffed purple bag as a pillow; Mama has to find the boy who is completely invisible once he's in his purple bag. And it's wonderful -- wonderful that he's found an interactive activity, wonderful that he understands that the purple bag helps him get his janglies out, wonderful that he is using words to say what he needs, and wonderful that what he needs is me. A little less wonderful that he seems to want and need these things all the livelong day.

You see, the terrible, shameful truth is, I DON'T WANT TO PLAY PURPLE BAG EVERY GOSH-DARN WAKING MINUTE! There it is: I'm the kind of mom who would rather, I don't know, sit and take a breath than help my son with vital therapeutic activities. But sometimes, you know, enough is just enough, therapy or no therapy. Maybe what I really need is my own purple bag to hid in when he comes asking.

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AUGUST 2, 2002

You know, I try really hard to be patient with the Special Education administrators in my district. I would not want their jobs for any amount of money. Any decision they make is bound to make somebody unhappy. Often the right -- or, to use appropriate lingo, the most appropriate -- thing to do is blocked by budget constraints, or personnel constraints, or political constraints. I have never felt that decisions with which I disagreed were made out of malice, or hidden agendas, or power-tripping (which, I guess, makes our district a particularly good one); I think they have been made out of disorganization, lack of vision, and a desperate attempt to please whoever is complaining the loudest at the moment.

Which means that, if I’m the one complaining the loudest, I generally get what I want. But man, can complaining become a full-time job. I’ve been calling the Special Ed director on almost a daily basis for most of the last six months, trying to get simple questions answered, and mostly what I get is, “Not available, call back tomorrow.” And often, when I call back tomorrow, it’s to find he’s gone on vacation. After a while, even the most patient person starts to lose it.

The particular questions I’m trying to get answered are not my right to know by law, so I’m limited in my ability to go ballistic from here. There’s no reason they shouldn’t tell me, but no reason they have to, either. So maybe they’re just stonewalling in the hope I’ll go away. Maybe, too, they just don’t have the answers yet, and figure if I want to call every day until they do, that’s my time to waste. But it all seems of a piece with the way the department is run in so many respects: Don’t deal with problems head on. Say anything to get people off your back, whether it’s true in the long run or not. Run around like crazy plugging leaks instead of designing a whole new dam. Tell parents you value their input, but make them call 43 times before they get a chance to give some.

On the few occasions I have actually spoken to the new Special Ed director, he seemed to indicate that he saw the same problems I did and was going to do something about them. Perhaps a new person with vision can snap what is in many ways a pretty good department into shape. I’ll be waiting. By the phone.

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