Home again

Just got back from a week's vacation, and must again report on the very special secret to traveling with scoodgy special-needs kids, whether you're going cross town, out of town, out of state, or out of the country: Bring Extra Adults. You can't beat tag-team parenting for making sure that everyone gets at least a little leisure out of their leisure time. Big thanks to our friends Carolyn and Brett for their co-child-wrangling efforts, which enabled me to spend almost the whole week off with my nose buried in a parenting book. Hmm, there's something wrong with that equation, but I'm so well-rested I'm not going to sweat it now.

The advocacy reflex

I think if you've been a special-needs parent for a long time, at some point you develop an advocacy reflex that goes off at the merest sight of injustice -- maybe the way a breastfeeding mother will automatically leak if she hears a baby, any baby, crying. Tell me I'm not the only one who goes around my child's school IDing kids who probably have fetal alcohol effects, or sensory integration problems, or learning disabilities, and wanting to tell off the teachers who seem to be dealing with them in such ineffective ways. There've even been a couple of incidents when that's gone against my need to advocate for my own kids; my daughter's had trouble with a couple of bullies over the years who seem to be to be so clearly driven by their own special needs that I can't even get properly outraged at them.

Recently, my advocacy reflex has been tripped by a boy I've been asked to tutor at the school. His learning disabilities are less profound than my daughter's, but she has it all over him in terms of organization and conscientiousness in completing assignments. My daughter lives in fear of failing one class; this kid has failed all his classes for seven consecutive quarters, and is about ready to fail sixth grade for the second time. There are supports and accommodations that seem obvious here, and I've been peppering the poor guidance counselor with questions about why teachers aren't doing this, and why teachers aren't doing that. With any luck, maybe I'll be able to make a difference for this boy -- but more likely, I'll just widen the circle of educators who think I'm all about making excuses for unacceptable behavior. Yep, that's my job, and I'm good at it, too.

I'm frustrated, no lie

My son got lunchtime detention today for lying. It's at least the second time this has happened. He told an aide he had a reading book with him and he didn't. And you know, he didn't seem to be too upset about the detention. It meant he sat at a table with just him and the teacher, and frankly, that's a much less trouble-prone place for him to be than his normal lunchtime seating. I should be glad to have him there. But man -- disciplining a child with Fetal Alcohol Spectrum Disorder for lying? What part of brain damage don't you understand? Punishing a fetal alcohol kid for lying is like punishing a blind kid for not being able to see. My personal philosophy with my son, and the philosophy of lots of experts on FASD, is that it's not lying if it does not involve deliberate intent to deceive. If a kid is telling an untruth because it's the first thing that pops out of his mouth or because he has no earthly idea what the truth is or why it's important, punishment is never going to be the best strategy. It doesn't prevent future fibs -- it makes them more likely, by stressing the child out.

This isn't rocket science, and it isn't news, and it isn't the first time I've said it. It's right there in his IEP behavior plan, which everybody assures me they've read. So why, in April, are they punishing him for lying? Why, why, oh why? Punishing a child for lying is as much a knee-jerk reaction for some adults as lying is for some kids, I guess. Perhaps I should do a functional behavioral assessment and institute some appropriate strategies like rewarding educators when they don't punish my child inappropriately. Do you think they'd like a sticker?

High School Musical: The Musical

As if there was any doubt that High School Musical, the oft-replayed Disney Channel movie turned chart-topping CD, was a juggernaut, be warned: It's coming next year to a school near you. I've already heard of kids performing dance numbers from the movie at talent shows, and now Disney's announced that the complete musical is ready to be licensed to schools for performance as early as next fall. My kids' middle school put on "Aladdin Jr." as their school play this year, so I knew that Disney was in the business of licensing its brands as junior theatricals, but this one's got to be setting some kind of record. I guess it's possible to lament the nature of, well, high school musicals to think they're going from time-honored classics to yesterday's Disney fodder. On the other hand, I'd be more comfortable watching 12-year-olds portray Troy and Gabriella than the characters in the musical they did the first year my daughter was in middle school, "Guys and Dolls." Something to be said for age-appropriateness, anyway. And the kids will totally already know the words and the moves.

Shot through the art

When I was a kid, the subject I could never do well in, no matter how hard I tried, was physical education. Just didn't have what it takes. The teachers were all sure I was just lazy or unmotivated or not trying hard enough, but my body could not do those push-ups and pull-ups. It always seemed unfair to me that classes like this got graded at all, when inborn talent gave such an advantage and inborn ineptness made effort inconsequential.

My daughter's having the same experience now, but for her the subject from hell is art. She's almost 16 years old and still drawing stick figures, and the teacher is sure she's just lazy or unmotivated or not trying hard enough. But she can't draw any better than I could climb a rope. The other day I fished an art journal out of the trash; she just barely got a C on it, and told me later she threw it away because her drawing was so bad. I looked through this thing, and yeah, the kid can't draw. But she did the entire assignment, which involved identifying traits in herself and illustrating them. Some of the words she came up with were, I thought, amazingly insightful, and it was no small thing for her to assemble these ideas and conceptualize an illustration and a sentence for each. For her, I thought it was an impressive and kind of touching achievement. And it ticked me off that she'd received the impression that it was something deserving of a spot in the trash bin.

Which is unfair, I guess. From an art point of view, a C was generous. Her drawings are kindergarten stuff. But it seems to me that cycle classes, of all places, ought to be more about effort and less about ability. As we put special education kids in inclusion classes for subjects like these, should there not be an awareness of where a student is at and what it takes for them to do something that might look lazy in other contexts? I'm not sure that's happening here, and I'm not sure these teachers are being made to understand what a self-esteem hit they're delivering. But at least she does great in gym.

Never tick off the aides

Well, I seem to be in some trouble at my children's school. Not with the administration, like that year when the principal forbade teachers and aides to talk with me and had me escorted off the premises at least once. Not with the teacher; I don't think I've ever really been in trouble with a teacher. This time, I've ticked off an aide, for reasons having partly to do with my tendency to overreact loudly when I think something's not being done right and partly to my son's tendency to pick up phrases he hears at home and parrot them, out of context, at school. So I might, say, in a moment of anger at something that happened in school, rage that a particular aide ought to do her job. And my son will then go to school the next day and, over and over, tell the aide to "Do your job! Do your job!" And really, even though I'd like everyone who works with my guy to understand that you can't take what he says seriously, I suppose that would hurt my feelings, too, and make me feel defensive toward that child's mom.

So it's unfortunate enough to be in bad with one aide. But aides talk, and they stand up for each other, and I'm beginning to get the feeling that I'm in bad with all the aides in the school, and that's a problem, because while teachers change each year, aides rotate. This morning, the aide who's supposed to watch my son before school officially starts was not where I expected her to be (that is, watching him) and when I asked her about it she said, quite curtly, "I know how to do my job." We've been friendly before, but clearly aren't now, and I can't help but feel it's because I've got bad aide buzz right now. (Although ... um ... must not say this where boy can hear ... but ... she actually wasn't doing her job.) And now I just don't know what to do. Should I force the issue and try to clear the air? Should I go above their heads and insist that my son's safety and protection hinges on these people's vision of their jobs being the same as my vision? Or should I just lie very low, try to ride out the year, and hope that nothing bad happens? Maybe send flowers? Cookies? Donuts? A picture of myself for their dartboard?

Some kids have all the fun

My kids are majorly bummed today because they don't get to go to a funeral. I wonder at what age you stop thinking of funerals as something you "get to go" to? Maybe about the age you start thinking that one day people will be going to yours. Personally, I'd rather go to school. But here was my daughter last night, after attending the wake for her great-uncle, saying to me in all solemnity, "I think going to the funeral is more important than school." Which, roughly translated from kid-speak, means, "How come my cousins get to go and I don't?"

Why? Because unless immediate family is involved, kids don't need to go to funerals. Because, unless there's a truly major family event, kids need to go to school. Because the disruption of routine that a day out of school entails would reverberate with my particular kids for weeks. And because my son has already asked every person in our extended family if he can see their keys, at least once, and after chasing after him all last night I really don't want to do it again this morning. If my sister- and brother-in-law want to keep their kids home and bring them along so they can chase after them all day, well, good for them. But my kids? My kids get to go to school.

Questions you don't want to hear at bedtime

As I've written here before, I'm pretty strict about what music I let my kids buy or download onto their iPods. I check the lyrics online and if I don't like what I see, that's the end of it. But I do let them listen to the radio -- my main concern being them listening to things over and over, not randomly -- and sometimes that comes back to bite me.

Like last night. I'd finally wrestled my son into bed -- not the easiest task, since at the end of a long day he's often so loose and out of control he's like a drunk after last call -- and here he comes popping into my room, full of energy, big smile on his face, with a question so piquing to his curiosity that he can't possibly wait until morning to ask: "Mom, what's a condom?"

Seems they were talking about condoms on the radio while he was trying to fall asleep, and golly, what was that all about? Thanks so much, Z100 DJs. It's not that I don't want to have "the talk" with my son, or that I haven't casually in small ways. It's just that I don't want to explain condoms to him when he's in a super hyped-up mood, or think about him repeating everything I say to his class the next day, in his "what goes in one ear comes right out my mouth" kind of way. I promised to tell him all about it in the morning if he'd go right to sleep, and by this morning he'd forgotten about it, and just as well.

Now all I have to do is figure out how to program his radio so it only plays lite tunes for old people. Of course, then he'll come in asking me about Viagra.

Meeting anxiety

I have a meeting with my son's teacher this afternoon to discuss some behavior problems, and I've been in a tizzy about it since the appointment was made. When do I get to the point where I'm no longer thrown into stress overload by these things? I've been having meetings like this for 10 years, since he started special-ed preschool at age 3. I've stated my case plenty. I've stood up to some pretty opinionated educators. I've gotten my way more often than not, and have generally had good and respectful relationships with his teachers. I even write articles telling other parents how to have meetings. Yet any time I'm called in to discuss things, I feel like I've been called to the principal's office. Am I going to get detention? Am I going to be expelled? My stomach's in knots.

And the thing is, I do want to have these discussions. I want to be called in to confer when there's a problem. I don't want teachers to feel that they can't talk to me because I overreact so badly. I just want my entire neurological makeup to change so that I don't seize up like this. And hey, while we're at it, we can just change my son's entire neurological makeup so there will never be a problem. Ha!