What Does Retarded Really Mean?

Technically, it means a person has a particularly low IQ, somewhere in the 60 range, if memory serves. My younger son, Noah, was recently subjected to IQ testing (part of his every-three-year testing regimen), and came out with a score of 48. I suppose that should make me feel awful, desperate, deflated. After all, he's officially mentally retarded, based on that score. But what I felt instead was that if in fact Noah's score represents him in any real way, then my sincere hope is that the world finds itself populated by people with IQs of 48.

After all, with more 48 Noahs in the world, we'd have a new population of people who are kind, who have no agenda, who aren't seeking to gain advantage over others, who only want to please people and make them happy, who have no urge to make money, to make war, to make other people feel bad. In fact, we'd have a whole new group of people who are entirely about being happy and making other people happy. We'd experience the simplicity of loving the people we're with, of having extraordinary radar for people who are genuine in their affection and concern, and we'd experience childhood wonder nearly every moment of every day.

My thanks go out as always, to Noah, for reminding me that those markers so many of us hold dear--educational attainment, job status, bank balances, etc.--can't hold a candle to what a "retarded" child like mine can give to the world. It's a whole new window into who really has ability in this world, and what it actually means to be disabled...

Download and Watch America's Song

Download and Watch America's Song

Speed Bumps and Mountain Peaks

I've never been one to take for granted that life will be easy. In fact, I'm quite the opposite; the person always expecting the other shoe to drop. It would be nice, now and again, if my dismal expectations did not come to pass.

I had and have no illusions that raising kids will be a picnic. Noah taught us that when he brought his edible self--and his autism--into our lives. But who would have thought that he'd turn out to be the easy one, all things considered? What to do about a teen who seems so down at times, so disengaged, so cynical? I'm forever being told how much my kids are like me, but I had reasons to be glum as a teen. My mom was a whack job and as a result, I didn't live in a happy home. Food in the fridge was an issue. Not so for my teen. If the fridge isn't always packed, the pantry is. He can have friends over without fear of having his mother embarrass them (at least most of the time). He's got more God-given ability than I would have if I lived ten lifetimes. And yet...

With our daughter, I thought we'd be managing speed bumps, but now I'm thinking more Himalayas. Every day lately seems to bring tears and fears. Tears over not having friends, over not fitting in, over not being included, over literally not being seen. And fears that it will always be so. I never wore rose-colored glasses, so I am well able to see where she might make things harder for herself, but having been a misfit myself, I ache for her. When she cries, I do too. Really. When she's at fault, I call her on it, but when she tells me how she tries to join other kids nicely, by saying things like, "Hey, what are you guys talking about?" and the response is, "None of your business!" I want to find those kids and strangle them. I want to tell them that being mean snot-asses now might make them feel powerful, but they'll peak in high school like all girls like them do, and it'll be downhill from there.

I try to tell myself that all of these things are phases, that kids change, and that circumstances do too. But it feels like we just leave one phase and enter another. And every successive phase seems harder. Even the little one pines for when things were simpler, when she was younger, in kindergarten. I feel that way too. Life was so much simpler when I was in kindergarten. Fingerpainting and sharing snacks. What more did life ask of you? And everyone was equally able to give.

Future Present

Len took Ariel and Noah to the aquarium this weekend where, among other things, they saw a group of severely developmentally disabled adults. Ariel asked Len if Noah would ever live away from home like those people do, in a group home. Len told Ariel that as long as he's alive, that will never happen. At which point Ariel turned to Len and said, "As long as I'm alive that won't happen either."

Yo-Yo Yo.

My mom days are exhilarating, exhausting and infuriating. Sometimes, all in the space of 5 or 10 minutes! Today so far has been a good day. I took Noah to school for early morning swimming. Coach Hugo was as welcoming to me and Noah this week as he was to Len and Noah last week. It's good for Noah. He swam some laps, but then spent some time jumping off the side of the pool into the deep end. And I remember when, not so long ago, going underwater was not an option for Noah. Change can be such a beautiful thing...

And Ariel was off to school for a student government meeting. The 10,000th child to receive help from Gift of Life was coming to speak with the government reps. And to top it off, it's Halloween. So my proud, politically engaged daughter put on her Chelsea soccer jersey and went off to school. She was too late to impress Sam with her jersey, but it's sweet that she even wanted to.

And yesterday, when I went to the book fair to buy the book Ariel wanted but didn't have enough money for, I managed to chat with a bunch of folks, all of whom had upbeat things to say. How great for me to hear, and how much better for Ariel.

That reminds me that as I was leaving the middle school this morning, I caught up with Mrs. L, the special ed. teacher in science. She didn't know that we'll be moving Noah next week to a self-contained science class. "I'll miss him," she said. And if I didn't know better, I'd swear I saw tears in her eyes. What can be said about a child like Noah who can't really learn the material, no matter how much Mrs. L modifies it, has only been in her life for about six weeks, and yet has made such an impression?

As for Sam, he awoke from his intense, post-school nap yesterday to mumble at me, "I made All-County." "Good for you Sam," I said. And I think for the first time, he appreciates this kind of recognition, though it's not the first time he's received it.

Who knows what the weekend will bring, but it's a gift to have these good moments. I can't forget that this is the same week in which I told Ariel I wanted to kill her, and that other parents beat their children for less. I'm human. I lose it. She knows it. That's why she's the same child who can go off to school in the morning claiming to be an unhappy child with a terrible life, and sing herself to sleep at night. Yo-Yo indeed...

How Low Can We Go

Is there a bottom to Noah's lack of comprehension? I think there must be, but we always seem to find some lower point. I've sat with him the past two nights as he/we did his homework. One part has been English, specifically, answering questions related to the Winn-Dixie book. I've known this child all my life. I know how disabled he is. And yet something about his utter lack of understanding of anything I read to him shocked me. I don't know why. It shouldn't have, I suppose. But maybe we've gotten so many glowing reports about Noah and how much everyone who works with him loves him, and how well he's done adapting to this or that, that I've forgotten how little he can really do in some respects.

Do I care that Noah doesn't understand this story I've been reading to him? No, not really. But I do want him to understand more and more, to make his adapting to the world as he gets older more likely. And he has made enormous strides; they just tend to have nothing to do with the average academic day.

I get sad about Noah. I feel heartbroken at times. I worry about his future every moment of every day, or so it feels to me. I know the school stuff matters little to him, and that he has in common with his siblings. But I wonder what can replace Winn-Dixie, and make his student day job more productive, more engaging, more useful to and joyous for him.

Or maybe I just no longer want to feel bad about doing homework.

Of Math Homework and Madness

I'm really, truly, unabashedly starting to HATE modern parenting. I separate this quite emphatically from how I feel about my kids, whom I adore. What I despise are the incessant demands placed on parents by schools. Idiotic, pointless, test-prep homework. Endless flyers--among which, irony of ironies--are many promoting the virtues of going green. Requests for donations of money, school supplies, time. Reminders to collect for UNICEF during Halloween. Your child's in this special intervention program, sign here. Tell us what you think your autistic child should be when he grows up. Fill in this form. Will he go to college? How about a sheltered workshop? How should I know!??!?!!? He's twelve years old!!! Shouldn't you geniuses who claim to be responsible for educating him be helping us to figure that out. He wants to be a pilot. How about I put that on the form? Then you get him in to flight school.

There's just all this busy work. Forms, flyers, requests, demands. And what difference does it all make? Our education system is so flawed. Even here in the affluent environs of Long Island. Sure, there are kids who get awards, but so what in the end. Trophies and certificates are great at gathering dust, just like some of our dreams.

So what difference does all this make to my kids? They go to school. They do their worksheets. But what they really want is parents who love them, a chance to romp in the grass, commune with nature, listen to and play music, make art, design new worlds, reads some imagination-sparking books once in a while, and snuggle with mom before bed. If I stopped sending them to school tomorrow, would it make much of a difference to who they are as people, to how wise they become? I know the answer is "no." I know that because my father's formal education ended in the equivalent of middle school, with the outbreak of World War II. He didn't finish school, but he'll always be the wisest man I've ever known. He never took an ELA. He didn't take AP classes. He didn't take the SAT. He missed out on the chance to spend half of fifth grade prepping for a single social studies test. Poor Papa. He got his wisdom the old-fashioned way. He lived in the world and learned from it. He spoke five languages. My children speak one, as do I. Far as I can tell, the schools count beans and test scores well, but do they count what matters? Do they even know what that is?

I often think I'm not much of a parent. I chafe at the routine of it. I don't care about what the schools care about. I've never liked dotting i's and crossing t's. I care about excellence, but not about excellent forms. I care about high standards, but not about test scores. One of my children is bored but will get through fine. The other is disabled, and running interference for him seems to be my life's work. My youngest is a square peg, if ever there was one, trying to fit into a round hole. School will kill her, if it doesn't kill me first. She will butt heads with almost everything about it. She will despise the restrictions, the boredom, the tedium, and her teachers will return the favor about how they feel about her. She will ask "too many" questions. She won't accept or like the few answers she gets. Her grades will reflect that. But on the bright side, if the world implodes between now and then, none of that will matter. We will all be brought down by the hubris of some. We will revert to our savage state, killing each other for crumbs. Finally, something will trump the need to score a perfect 2400 on the SAT, at least here on the North Shore.