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!

Take back what you said in my imaginary conversation!

Do you ever do that thing where you argue with people in your head, and then turn all sorts of hostility on the actual person when you see them, all the pent-up anger from that argument, and of course they have no idea why you're so steamed since they were not, technically, there inside your head? Bad habit, that, and one I have a hard time breaking.

It's easy to have that sort of inner wrestling match with someone on an internet e-mail list, because if you blow off steam at them inappropriately you never have to see them again. But I'm doing it lately with a couple of real-world combatants, particularly one woman who works with my son and has been pushing my buttons lately, and I'm starting to lose track of whether the hostility I'm feeling is based on actual behavior or virtual behavior. I think it's kind of a vicious circle: She seems a little snippy to me, and so I fight with her in my head, and then when I see her, I'm a little hostile, which makes her a little snippier.

It's bad for my son all around, and I should probably find an appropriate way to iron things out with this person so I can stop being vaguely mad, but then I might find out for sure that she dislikes me as much as I imagine, and hmmm, maybe I can do without that.

Don't do me any favors

Is there such a thing as party favor etiquette?

My son had a perfectly nice birthday party yesterday, everybody seemed to have a good time, there were no behavior problems from either the birthday boy or his friends, and I should be feeling all successful about the whole thing. But something keeps rankling me: When we handed out the party favors -- a little plastic car filled with candy, because my son loves cars, tied to a "road" of a flat pack of gum -- one of the moms came back to me, said her daughter didn't play with cars or eat candy, and since my son likes cars I should just give it to him.

And ... well ... okay. I know I'm taking this too seriously, and why should I care. It's not like I went to huge effort and expense on these favors, or that the mom did what she did in a particularly rude way. It's just ... you don't do that, do you? Give back a party favor? Maybe you take it home and throw it in the trash, or maybe you "accidentally" leave it behind at the party site, but to go up to the party-giver and specifically reject it? Am I oversensitive (YES!), or is that bad form? Hmph.

New-style birthday

It's my son's birthday today! Happy birthday, guy! You're a teenager now! And your mom won't be sleeping well for the next ten years or so. But today, we celebrate. Then we celebrate again on Sunday, when he has his birthday party with friends -- a dozen kids from his special education class descending on a bowling alley. Fun times, for them. For me, it's making sure that boys do not go into the men's room together, because they'll certainly do what my son is constantly crowing about as "the new-style flush," which involves hitting the handle with your foot. This is, of course, ever so much more fun when you have an audience and can show off your extreme prowess at kicking plumbing. Are teenagers supposed to find such things so overwhelmingly hilarious? He's thirteen in years, but still a kid at heart.

If you have a lot of it, it must be a collection, right?

My son has been loving keys since he was a teeny tiny little guy and still loves them now when he's a big heavy almost-teenager (tomorrow, yikes). You could call it a collection or you could call it a mess on the floor of his room, and I've done both. But for the purposes of the About.com Collectibles site, which just ran a nice little article about my guy and his keys, we're calling it a collection. Does your child have a collection, or a mess of something that you could call that on a good day when you were trying to put the happiest possible face on things? Take this survey and let me know whether I'm the only one readying a pile of junk for the Smithsonian.

C is for cookie, that's good enough for me

I seem to be on a cookie kick with my kids these days. I got a nifty standing mixer for my birthday last June, and it's been sitting there on the counter looking all cute and underutilized, so all of a sudden I'm making cookies every weekend, and eating cookies every week, and wearing cookie-fat now and forever. It would be great if this was some sort of bonding exercise in which I helped my kids learn to bake, but I'm way too much of a control freak in the kitchen. What they mostly are learning is how to get things out of the closet for me. But the cookies are yummy. Mmmmmm, cookies.

This weekend, we're doing oatmeal raisin. Not the nut-free, egg-free, dairy-free, wheat-free recipe that was on my About.com site this week, but if your kids need any of those -trees, you might give it a try. We'll be making the one printed under the lid of the Quaker Oats box, with vegetable oil subbing for shortening since I'm transfat-free. Let me know how yours turn out.

What's scarier, the movie or who's watching it?

What's with young kids going to scary movies and playing scary video games? Lately I've had a few young classmates of my kids talk about their favorite R-rated movies like watching this stuff was the most normal thing in the world for a 12- or 13-year-old. When I say something unbearably fuddy-duddyish like, "Isn't that rated R? You shouldn't be watching that!" they seem genuinely bewildered. I can't quite decide if their parents don't know what they're watching or don't care, but man -- kids that young just do not need that stuff in their brains.

I was explaining this to a sixth-grader at my kids' school, a big fan of the movie "Training Day," who was appalled that I not only did not let my son play violent video games like "Grand Theft Auto," but that when a friend had brought it over, I made them stop playing and remove the offending game from the machine. "Wasn't your son embarrassed? Couldn't you have just waited until the kid went home?" No. And no. One viewing of that stuff is too much. And a boy like my son, who regularly sucks his fingers, jumps, and flaps, is probably beyond embarrassment. But it's true, too, that his friends know me, and know what Mama don't allow. Am I the last nay-saying mom around?

The miracle would be me staying awake

I tried to watch ABC's new reality show Miracle Workers last night, since it featured two stories that were right up my Parenting Special Needs alley: a child with scoliosis and a teen with Tourette syndrome. The show features two "host" teams, each with a doctor and a nurse, who find specialists to make miracles come true for people who need dramatic treatments. I made it about halfway through, to the point when the girl with Tourette's had had a hole drilled through her brain and some sort of probe inserted, and the boy had weathered an operating-room crisis that started with, "Oops! He's paralyzed for life!" and ended with, "No, wait, never mind." I really wanted to see what happened -- wanted to see footage of the boy walking straight and tall instead of leaning leftward, and the girl speaking freely without constantly hitting herself in the head. But I nodded off, as I tend to do whenever I sit still after 9 p.m. (Oddly, though, I was able to stay awake for the entire episode of "Grey's Anatomy" on Sunday night at 10 p.m. Maybe if "Miracle Workers" included some subplots about the complicated romantic lives of those doctors and nurses ... no, no, that would be wrong.)

Uneasy rider

I was reading a lot of discussion today on a parenting e-mail list about riding bikes, and the terribleness of your child not being able to manage a two-wheeler, and it made me wonder if I'm deeply scarring my kids in some way by really not caring much about bike-riding one way or the other. I didn't ride a two-wheeler until I was 16 years old, my husband never learned, and so it's hard for us to feel real tragic about our son's failure to launch. Our daughter learned to ride fairly easily, but since we don't encourage constant and energetic bike riding, she doesn't get much practice. And the little guy just can't manage without training wheels, and we can't manage to get out there with him and work on it.

Is this bad parenting? Some sort of oblique child neglect? I don't know. When I was a kid, bikes were a major form of transportation. Kids rode bikes to school (me, too, on those training wheels, well past the age at which it was social suicide to do so), but today my kids' schools forbid that. I needed my bike badly for college transport, but I don't think that'll be an issue for my two. My son's friend needs his bike to do really dangerous stunts involving stairs, but we're not going there for gosh-darn sure. Exercise is important, and I'm trying to get both kids to walk more, but bikes? Seem like an accident waiting to happen, to me. But then, I'm not a biker. And passing that down, apparently.

Sure it's dangerous work, but no IEP meetings

Pop quiz: What's tougher, leading the police force in a war-torn nation, or teaching special education in middle school? Beatrice Munah Sieh is in a position to say. She left a career in Liberian law enforcement when she fled the civil war in her native country and found work in the U.S. as a special-ed teacher in a Trenton, N.J. middle school. Liberia recently elected its first female leader, and she called on Sieh to come home and become the West African nation's first female police chief. Sieh's fellow teachers had no idea they were working with a trailblazer: "None of us knew she was involved with law enforcement in her country," one is quoted as saying. "We just thought we were all educators together."

This whole story just amazes me. Can you imagine your child's special education teacher all of a sudden, one day, announcing, "Sorry, can't finish out the year, I'm going to go back home to lead the police force." I mean, you have to be tough to deal with some of these kids, but that tough? 

Does somebody really READ all this stuff?

My daughter has state standardized testing next week, and boy, it makes me long for the old days when standardized testing involved filling in bubbles with a Number 2 pencil and not much else. These days, the kids have to write essays, and long ones, too, if the amount of pages listed in the sample book is any indication. I don't think I had to face four blank lined pages in a test exam booklet until I was in college, and even then it sent cold shivers. Even if I didn't have kids with learning disabilities, I'd think the folks behind all this testing have gone a little nuts. As it is ... well, I'd laugh, if so much importance wasn't placed in this stuff.

No gambling in my blood

I went to my first big-time Tricky Tray on Friday night, and boy, was that a trip. For those of you who've never been to a Tricky Tray -- and up until I moved to the Northeast, I'd never heard of them -- it's basically a super monster mega raffle for which you buy a lot of little tickets, drop them into containers in front of a variety of fabulous, semi-fabulous, and really-not-very-fabulous-at-all prizes, and then sit around for a few hours listening to people read numbers to see if you won anything. Some folks get heavily into this, spending hundreds of dollars to buy tickets to invest in winning what is mostly, essentially, junk. My husband and I just aren't in the spirit, though. We bought some tickets because it benefits the school, played them fairly half-heartedly, and lost everything. Not even the smallest basket of potpourri or paperbacks did we manage to bring home. I'm happy that the school made money, less happy that we spent one of our very rare evenings out together in such boring circumstances. As with so many fund-raisers, I'm left thinking: Can I just write you a check so that I don't have to participate?