I want my someday today

Martin Luther King said, "The moral arc of the universe is long, but it bends toward justice." I've held these words to my heart as a hope and comfort many times in the past few years - following the fiasco that was our government's handling of Katrina, and always when I think about this sad interminable war. I really do believe that we humans will fail and fail again, but that, in the long view, we bumble towards the right direction: Race relations are a mess, but we did, at least, end slavery; women face continued discrimination, but we do have the right to vote. It's not perfect but it's progress.

But right now I'm feeling that Dr. King's words offer the best consolation to those who have the privilege of hindsight. Today my usually unflappable husband had another meeting with the school district. When he came home he was so angry that he couldn't speak for a while for fear of exploding in fury. Finally he calmed down enough to tell me how they lied, distorted the truth, contradicted things they'd said last week....

I do believe that, in time, most schools will have decent, effective programs for autism. Because it's becoming a national emergency. Because the lives of so many of us are or will be affected by autism. But for me and my daughter stuck here in the bad old days, that distant arc toward justice is not much help. I want to overcome today, tomorrow, or even next year. But for my baby's sake not just "someday."

Just breathe

I've been down lately about the fact that Kirk and I have worked so hard these last years to get onto a better financial footing, and have succeeded - on paper. Yet here we are, paying out this humongous tuition for our special-needs daughter, and once again living close to the bone. It's tiring to have to think over every little purchase - to decide I can't replace my old bra this month because we have to buy the kids back-to-school supplies.

So in my yoga class today, the teacher was having us focus on our breathing. She said, "When your mind wanders away from your breath, just pull your mind back. It's good practice for starting over, which we have to do constantly in life." Ain't that the truth.

but on the lighter side....

I was getting ready to take the teens to their highschool orientation yesterday. I had on what I thought was a pretty reasonable outfit: beige capris, a coral pink shirt, and bright pink matching crocs. Yes, I have finally given in to the Crocs. They're so smushily comfortable and I tell myself there's a little Scandinavian clog cool going on with it. So I was standing by the door and S glances at my feet with no expression on her face. And I understand immeadiately that she will be irretrievably humiliated by my large, pink clown shoes. So I look at her and slip the Crocs off and put on tan sandals. And she smiles. This from the girl who, as a toddler, used to wear underpants on her head.

Cri de coeur/crying in the car

Yesterday I took my teens to a 9th grade orientation. After the lecture part was over, they ditched the walking, talking (usually too loudly, and to strangers) humiliation that is me, and I waited around in the lobby with some other abandonned moms. A tidy, brisk-looking woman strode by and someone whispered, "That's the head of the school board." I said bye and dashed after her. You see, the school board is, in theory, the boss of the superintendent who is the boss of the whole school system. And I had a bone to pick with the school.

I got her attention and was politely apologetic about shanghaiing her. I told her about our situation with our special-needs kid; that we'd been working at home with her for her whole life and had finally, six years ago, discovered one successful way to teach her and had been doing so for six years. Unfortunately, our school district didn't use that method. Furthermore, we were entirely willing to waive the bussing costs for both our daughters - a cost of around $46,000 to the district - if the school agreed to pay the $50,000 tuition for our autistic child. An almost even trade. And that didn't even take into account their costs of hiring attorneys when/if we have to sue. I suggested to her that this didn't make financial sense in the long or short run.

Her response was to point to her entirely "typical" son and say, "Well, I could decide that this school wasn't the best place for my son, and I would be free to place him in any school I wanted to, at my own expense."

Politely, but wishing I could smack those specious words out of her head, I pointed out to her that our situations were different: her son speaks the language this school is taught in, he can learn there even if it's not perfect. Our daughter doesn't speak the educational language the public school uses: she learns in a very different way. It would be like sending her son to a school that was taught in Chinese. No learning would go on.

She told me grudgingly that she'd look into it and I thanked her and went to my car. Where I wept because we live in a world where people like this are allowed to have power over my darling, fragile child.

Race, class, and another strange day in America

Went to the central office of our school district today to register my daughters for bussing to their private schools.... I really believe in supporting public schools and also hate the whole culture of privilege of private schools. But my special needs kid can't get her needs met in the public schools and my youngest was bullied and miserable. So I left my ideals at home and went to do the right thing for my kids.

The scene at the office was so disturbing. For the hour I was there, every white parent that came in was registering their kid for bussing to a private school and every black person was signing their kid up for public school. And then a bleach-blond, toned, tanned, 14k-flashing mom from a rich suburb didn't want to let a woman who was 8 1/2 months pregnant, hot, dishevelled, and out of a job "because I'm so far gone" go the the registry window because she had been sitting down to wait (gee, I wonder why?), not standing in line. And even though I spoke up vociferously for the pregnant woman, I still felt a taint by association with Mrs.tidy Suburbia - not just because of our shared skin color, but also because of our shared class, our sense of social confidence, and entitlement to what we damn-well deserve. It was a sad place to spend an hour.

The other thing I noticed was that all the black kids were quiet and well behaved and the white kids (e.g. Mrs. Rich lady's) were running all over the place not listening to their parents ineffectual chiding. "Come on Jonny, stay in here.... you're not allowed to go in there. Come on...." as little jonny blithely ran out the door. I mentioned this to my husband when I got home, and he told me about a recent study that talked about this very phenomenon. The researchers found that in ignoring/defying their parents, white kids were learning negotiating skills that would serve them well in later life. Whereas in behaving as their stricter parents told them to, black kids were learning a passivity that would keep them from getting ahead in college or work. So basically these kids are getting screwed both ways: if they behave well they're passive, if they're defiant they're stereotyped as troublemakers that justify all the white people pulling their kids out of public schools.

As I said, a sad place to sit for an hour and contemplate the screwed up state of our country.

Part 3

I've been having terrible insomnia for months now. It's gotten to the point that every night I have to make a choice between taking a sleeping pill, getting a full night's sleep, and being groggy the next day or not taking a pill and not getting to sleep till at least 4 am (and feeling more alert the next day). I've had periods of insomnia all my life so, for a while, I thought it was just another inexplicable ( yes doctor, I exercise, no, I don't drink excessive amounts of coffee) period.

But yesterday Kirk told me he'd contacted the people at his retirement account and they'd OKed us taking out a $50,000 loan against our retirement money to pay tuition for our daughter to go to a school that can meet her very special needs. And as I lay in bed at four o'clock in the morning, I thought about how we're literally mortgaging our future to pay for our daughter's present and it seemed suddenly pretty obvious to me why I can't sleep. Yet this is, for us at least, the only acceptable course for us to take. Someone told me recently how "admirable" it was that we were doing this for our kid. But the truth is, neither of us could live with ourselves if we made the choice to be financially sensible and secure and put her in a school that couldn't meet her needs. That's all. No drama, just us walking down the only road we see before us. And now the kids are hungry and I have to go back to the calming mindlessness of the passing quotidian moments; no great threats or decisions there, just Ramen for lunch -- immediate needs and simple fulfillments.

Craven self interest in the schools, Part 2 (of what looks to be a very long series)

In theory, the schools are supposed to create an IEP (Independant Educational Program) for any child, gifted or disabled, with special educational issues. With three of my kids labelled as "gifted" (and my feelings about the use of that label will have to be a whole separate blog),I've long understood that the IEP is merely a formal set of hoops that we sign our way through so that our kids canl be pulled out of their boring classes and do the same fun stuff with other kids whose parents advocate for them; there is no true individuation of their curriculum. So it shouldn't surprise me when the school district shows openly that the IEP process is a sham.

As my earlier post said, in our last meeting with them, our school district, while pretending to be cooperative, let us know indirectly that they weren't going to play nice and place our kid in the private school that could really serve her needs. This morning my husband talked to the director of special ed who told him straight out, without any IEP (in fact, before having even a meeting with us to create a make-believe IEP) that "the most appropriate placement" for our daughter is their crappy classroom with their untrained teachers and that there is "no way" they will reccomend a placement at the private school that is actually equipped to teach her.

So, again, I thought I was jaded and unsurprisable, but their unabashed openness about letting finances decide what's "appropriate" for a child shocks even me.

P.S.- The otherwise helpful and lovley private school has said they need TWO months of tuition up front. At $50,000 a year over nine months all I can say is, Ouch!

Meet the Munchlers!!!!

My incredibly talented brother-in-law, Stephen Savage, designed these adorable lunch boxes. They're going to be widely available, they unzip all the way to make a lunch mat (and for easy cleaning. Fellow parents, remember those icky food-stuck-on corners of your kid's lunch box? A thing of the past!), AND they cost a mere $9.95. Cute, sensible, and a bargain.

....and so we fight on.

My husband just got back from a meeting with our school district about school placement for our special-needs daughter. Before the meeting I felt and acted very detached about the whole thing. Kirk, with his usual optimistic outlook would say, "MAYBE they'll see that we're willing to fight this all the way and just give us what we want...." To which (having grown up in the cynical-making lap of the US government) I'd roll my eyes and say, "Yeah, in your dreams." So, in fact, I was right. Hypocrisy and greed win out as usual; placing a child who only learns by ABA/discreet trial methods in a class where no one's trained to teach that way is clearly the "most appropriate placement."

But when Kirk told me the outcome of the meeting, I literally began shaking and I felt something very tiny and hidden crumble inside me. And it was optimism and hope: hope that the world would go the way it should; that these educators who, no doubt, went into the field because they wanted to help kids, would really try to understand what is best for Charlotte the girl rather than than look in fear at Charlotte the precedent. Silly me. I'll know better next time.

Mom gets Warped

I took my teens to the Warped Tour today. It's a multi-band, multi-tent, Lollapalooza-type event. It was swarming with teenagers who cared desperately about their images; they dressed in black and were pierced, tattooed, dyed and trying very hard to look scary. There was, however, one boy, in particular, that I noticed. He wore sprayed-on-tight black pants with a metal-spike belt buckled firmly below his crotch and riding under his butt. As I watched him, I thought to myself, Someday he'll look at a picture of himself now and realize that, while the tight pants were cool, the choice of where and how to fasten his belt was not. And he'll wonder "What was I thinking?" But then, even worse, he'll see a teenager defiantly wearing his belt below his ass and he'll want to stop this teenager and tell him, "You don't need to do this. I already did it for you and I learned that it was stupid." But he won't. I know all this because I once wore platform shoes.

What I decided

As a woman who's had some serious travails, I've heard all manner of comments about God's intentions in my life. When I had a miscarriage and D & C (at a Catholic hospital) the nun who tended to me when I woke from the anethesia, crying my heart out, told me that Jesus wanted my baby. To which I replied, in my head and my heart and,very possibly, with my mouth, "Not as god-damn much as I wanted it!" After my daughter was diagnosed with autism I was told that God never gave us more than we could handle. Then I had a nervous breakdown. Ooops. Dished out a little too much there big guy.

But, of course, I pray to God for help when I'm in need, see God's face in the wildly unnecessary beauty of the world. So I've pondered this question of God's intentions and intervention for some time now. And here's what I've finally come up with. I don't believe that God directs and decides all things. I don't believe God took my baby or that God made my daughter autistic. I believe that God set this world in motion and that there is randomness in the recipe for life. I also believe that in chosing how we face these things that come our way - in chosing whether to turn away from them or walk toward them - we can chose to live our lives as expressions of God's love, pure and equal, for all things - for me wounded and weeping for that little scrap of life I'd just lost, for my autistic daughter with her deep neurological myseries, for a butterfly that lives one day of perfect beauty and then dies. So as we receive, we can try to give. That's what I decided.