Sunday, November 20, 2011

Pissed Off

Defensive? Confrontational? Wonder where he gets it...

As Thanksgiving approaches, I feel I have a lot to be irritated about. The writer who accused me of being ungracious and elitist because I’m not including her agenda in my book, that was one. The mysterious bus strike is another, which’ll be announced, or not, probably around 6:55 a.m., which is about when my son actually gets ON the bus, which may or may not be here for him to board, thanks a bunch, because kids with Asperger’s Syndrome love it when their routine dissolves and their mother stares at them in blank dismay.

But staring in blank dismay seems to be the order of the evening; staring at my laptop screen, actually, and not at any real person, which just underscores the volatility (as in fleeting, flying away, particulate, rather than unstable or dangerous) of the interchanges rendering me so… pissed off. And there’s nothing I can do about it. I’m just pissed off. For no good reason.

What is a good reason to be pissed off? Somebody crashed into our parked car once, our old car, cracked the radiator, and didn’t leave their number; that pissed me off. We used to have a neighbor who lived under us and would pray and sing and speak in tongues as loud as she could at 2 a.m. then slam the door in my face and call me a bloody-handed Jew (whatever that is) when I asked her to stop; that pissed me off a lot. This is the concrete stuff of life in New York; there’s plenty of meat and potatoes piss-off to go around. Shit happens all the time.

But on the internet, nothing actually happens, so when I get pissed off here, I feel like an idiot. My tirade about Tina Fey was like this; she’ll never read it, she’ll never care, and some people who DID read it thought I was certifiable.

Yet here I am.
I can’t identify the sources of any of this, which pisses me off, because I don’t want to piss anyone off. So I’ll just say that I encountered someone who came to the conclusion that they would medicate their child with behavior problems, because their doctor said that if they did not, special ed would be their only option, the last resort!

Oh! did that piss me OFF! 

From the top... I’ve been an outsider all my life. I got that message, you’re different, you don’t belong, early on. It was said to me by, and about, my lefty Jewish family in a gentile, conservative neighborhood, and it developed as an identity by association, to my Autistic sister, who was the only local disabled person I knew, other than the one boy with Downs Syndrome, who was the town pet.

I’m sure I suffered from undiagnosed anxiety as a child because I was afraid of everyone, and I probably had some Aspie-like traits; I always felt much safer with adults, who would affirm me for my intelligence and vocabulary, than with kids who thought I was a pudgy weirdo and told me so to my face all day long at school, and who wouldn’t let me play with them in the cul de sac on the weekend, not least because I was afraid to ride my bike fast and didn’t think running, screaming, punching, and falling was a good game. 

By the time I was in college, all I’d figured out was that to some degree I could fit in by copying what I thought other people were doing, which seemed to me to mostly be partying. And I may even have had undiscovered learning disabilities, because as far back as elementary school, words have swam on pages, I could not comprehend even the simplest math, and science and history eluded me. In fact an adulthood friend who knows all this about me once pointed out that maybe the reason I haven’t graduated college yet is that I’m afraid to leave the luxury and welcome of writing and literature classes, where I revel, excel, and am free. 

But up till college, my entire experience of school, a good quality, mainstream school in a well-appointed suburb, was one of constant terror. I was aware of kids who performed poorly or had “emotional problems,” (didn’t I?) and were moved to private schools; in fact I begged my mother to do the same for me. I didn’t know what really went on in the private schools, but I had a fantasy that it involved not being made fun of by peers or criticized all day by teachers for not applying myself. Adults’ disappointment made an unbearable impression on me, and I struggled with depression and shit self-esteem well into my adulthood.

So it was in my 30s, that I began to pull myself together; it really started with my dog walking business. I’d hopped from one waitressing or retail job to another over the years, but finally, working at something that belonged only to me, that was the outcome of just my own efforts, skills, and decisions, I started to experience confidence for the first time. My discomfort in the world, my overall self-loathing, just began to abate, bit by bit. I was outside all day. I was in shape. I was with dogs. I didn’t even mind working seven days a week. I got an idea of what it meant to be happy. 

Fast forward ten years, to when I would find out that my son has autism; at first I experienced a bizarre hurtling backward through time, as if my whole emergence from an unhappy childhood had been a dream, as if I’d learned nothing, accomplished nothing, was back at square one. Over the ensuing months I would get my head around the fact that my son is not me, nor is he my sister, nor am I my mother, and we have our own path to forge, and honestly, so far, it’s going good.

But one of the reasons it’s going good is because I’m an outsider, I’m used to this shit, and, I’m not actually that impressed anymore with what the regular people are doing. I’ve gotten liberated over the years from the approval of others (for the most part,) and I’m prepared to walk away. So from that perspective, I’m able to see my children's places here not as what will be allowed to them, but as what I help them take for themselves. 

New York City, specifically Queens, is not, in fact, a well-appointed suburb with a (as in one) solid school system. In terms of public education, this boro is an out-of-control hodge-podge of kids from all over the world and from every economic strata, going to decent schools in somebody else’s neighborhood, not getting into the good schools in their own neighborhoods, making the best of it in crappy schools, elbowing their way into G&T, sitting tight for charter school seats, and about 20 thousand sets of parents annually having nervous breakdowns.

But where Bud and his needs are concerned, I am reasonably well equipped to say to all that, Fuck it.

What happened to Bud when he tried regular kindergarden was every bit as concrete as the ululating Jesus freak who lived under us in the last building. There was no denying that this boy wouldn’t survive in a mainstream school, despite his nice, solidly high-ish IQ; he has no cognitive problems, in fact he has some strengths. His verbal skills and his gift for nuance, symbolism, and complex narrative are nauseatingly familiar, but that and a metrocard’ll get you on the subway. The behavioral crisis this kid had served a true purpose; it was proof. He’s different. It’s not amorphous, it’s not debatable. He needs a special school, where people are quiet, and there are no bells, and adults don’t shout, and there are no crowds, and where all day long, he reckons, gently, with himself. 

And he has that school, and I’m so grateful. I’m mad about Bud, I’m crazy about him, and he deserves to be safe and happy. There is this place, this school, that is like a magical wonderland where smartness and brightness do not rule; his teachers take him as he is, as a whole kid, and they give him what he needs, not just to survive, not in order to get some municipal or federal stamp of approval, but to learn, and to grow as a person. 

It’s a special ed school. It’s what’s called a New York State Approved school, which means that, based on evaluations, (which are necessary evils at any specialized school, even if you have all the money it takes to send your child wherever you’d like,) if the DOE’s Committee For Special Education can offer no fit setting for a child with high cognitive function and intensive behavioral support needs, your child can attend, and the DOE will pay.

My son has therapy of one kind or another five days a week. He has gym every day. Do NYC general ed schools have gym every day? My son swims in the school pool once a week and has karate once a week. He brings art home all the time. He’s asked to take responsibility for his poor behaviors and is expected to improve, with counseling, and for his good behavior, he’s rewarded. He has all the help he needs to get all his work done. In a gen.ed. school, he’d be in first grade; in his special ed school, he’s doing first and second grade work, with 7 other kids in his classroom, and as many aides as are needed.

Is every special ed school so ideal? Probably not. Do doctors or other professionals ever represent special ed to parents this way? Definitely not. Which is the one sort of out I can grant to the abject revulsion that flashes on parents’ faces when the option of special ed rears its funky head. Okay; they didn’t know, they didn’t grow up with it, nobody told them. But is that the way it’s done these days, especially here in the city? We just wait around to be told? We don’t research all night into our child’s options, into what choices we may have? We just let the doctor decide? Really?

When I read that someone chooses behavior and mood modifying medications for a child because the doctor said there’s no other way, I get really pissed off. The child in this instance hadn’t tried special ed, they weren’t given a chance. I’ll bet that the parents never even looked into a special needs school, but I don’t know that; I have, however, heard other parents reject the very idea of special ed, saying, “I can’t even go there.” I guess they're afraid they'll never come back.

Or maybe it's something more. I participated in a research study recently, helping therapists help special needs families more effectively. I said that therapists should support parents' autonomy, no matter what, that parents shouldn't be afraid; if they don't like the way their child is being treated at school, if it's not the right place, they should yank the kid right out, and that therapists should support that. People at the study audibly gasped.

"What," I said.

"That's really hard to do," somebody said. "That's a big decision."

Of course it's a big decision! I had to drop out of school when I did it for my kid. But isn't medication a big decision, too?

Or is there some siren call to it, is there some secret wish involved, that the right pill will...

                    make all the problems go away...


I don’t think I have all the answers about myself. I don’t think I have fully parsed what it means to me, why it hurts me, that some parents so desperately want their kids to fit in. Maybe it touches some forever-raw nerve, some off-limits zone where love is conditional, and therefore lost. Maybe I re-experience my parents’ disappointment in me, when I could not bend my narrative imagination into a knack for numbers, when I couldn’t get off my training wheels, or stop being afraid of a ball. Maybe in some ways, Bud’s special needs vindicate or affirm me, and if that’s so, I’m very sorry toward him; I don’t want to get strong on my own son. 

At the same time, I really get it that there’s enough about Bud that’s manageable and delightful so that my life with him is relatively easy, now. His chatterboxy style and sense of the absurd is just plain fun to be around, and when I’m fried, he can operate reasonably well on his own; he plays PBS Kids on the computer, and is no longer afraid to write and draw, in fact he loves to (thanks to intensive OT.) Most days he’ll play with his little sister for significant chunks of time before he wants to whack her with a Barbie doll; in fact he’s become able to come to me and say, “She’s annoying me; can you help us please?” which is music. Call all of that pretty normal, but he wasn’t always this way; he is this way now, because of special ed.

When he had his crisis, he was violent. He eloped from the school and ran into traffic, desperate to come home. He lost the power of speech and could only communicate in a rasping, wordless growl. He bit people and had insomnia. He had jolting spasms of Tourette Syndrome. His eyes bulged and he scratched at his skin and sweated and spoke tangentially at times, about things that are not real, and we were not sure he knew it. He beat up the dog, kicked my husband in the balls, was hitting his sister. He was, frankly, out of control.

And of course, of course, I considered putting him on medication at the time; every where we went people told us to do it. I considered it, but deep down, I just felt sure that it wasn’t the answer. I had no evidence that I’d be right, it was my maternal gut instinct. But the educators and therapists, the principle, at the special ed school, agreed with me.

Let’s give him a chance, they said. And, It could be a tough transition, but we’ll handle it. 

And they did. 

A year later, that school is Bud's second home. His social, coping, and academic skills have come such a long way, because of special ed, and the pace, dimensions, and therapies that go along with it; and it’s free. We didn’t sue anybody, we didn’t go into mediation, we didn’t lay out tens of thousands of dollars, and we also didn’t try to force him to be not himself, to do or live with more than he could bear.

I talk to parents around me all the time, and I read; that’s what parents of young kids in NYC do. We obsess about schools, we compare and compete, we look for ways in, for edges, for leads. I hear about ‘good schools’ in the mainstream that have 25 children in a room with one teacher, where it takes 20 minutes to describe the weather and put the appropriate icon on the board for that day; I hear that the teacher says “Quiet down!” more than she says anything else. I hear that kids who score well on standardized test sit in the back of the room and are ignored or given worksheet after worksheet to keep them busy, that some classes have lunch at 9:30 a.m., that there is no recess because the school can’t afford insurance for their yards, that the children watch “Spongebob” to be kept from running around in the overcrowded lunchroom, that they have no gym, no art, that they spend 10 – 20 minutes of every 45 standing on line.

And I want to ask parents of kids with special needs, have you even considered what this normalcy dream is really about? Is this what is ‘best’ for your struggling child?

I want to ask them, what if special ed school was great, and your kid missed it?

Wouldn’t you be pissed off?



Sarah said...

I love this post. Love your writing.

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