Susan's Blog

Friday, April 4, 2008

A Vacuum of Good Sense

I am beginning to really worry about B again. I had to reschedule his birthday party for this weekend, because it was just a small number of boys, and half couldn’t go. Well, tomorrow, only two can really go again! I have called and tried to get the other two to come even for an hour, or for me to come and get them and bring them home if it’s hard for the parents, but this just breaks my heart. I don’t get it. I guess people make plans, get overwhelmed, but this is such bad timing for Ben.

It has been such a polarized year for him. Wonderful personal growth coupled with a terrible difficulty with the high-pressure fourth grade curriculum. That sounds like a joke, but it’s totally serious and pathetically so. I am getting extremely disillusioned with my “wonderful” school system, which is turning into the pressure cooker wet dream of the highly-standardized fascist/fetishist. What is with education today? Partly it is the economy, partly, the crazed, grasping mandates of No Child Left Behind. NCLB, the Bush-reauthorized ESEA, calls for mastery in both math and reading of all children by 2010, and most of the states in the country have designated their high-stakes exit exams to be the arbiter of mastery. This, in essence, removes most or all of the control over curriculum and graduation from local control (school boards and school committees) and gives it all to the state and federal government. Schools, then, are scared shitless that they are going to be deemed “failing” simply because certain of their populations cannot pass the state standardized exams. So now most school systems teach to the tests, drill and kill, and, in this era of tax cuts for the wealthiest and the least public funding of education in decades, they cut their “specials,” the arts, the softer subjects, the areas where alternative types like Benji may excel. All that matters, in so many school systems these days, is math and English, with maybe some science thrown in. Whatever is on the state’s test, that is what the schools will emphasize because they don’t want to be taken over by the state.

I’m serious. This is what No Child Left Behind calls for, ultimately: sanctions against “failing schools.” And the standard by which they measure our schools is most often one, high-pressure exam. Such legislation rides roughshod over Individualized Education Plans, or English as as Second Language-learners, or children who do not grow up in test-prep highly educated suburbs.

All in the name of preparing them for “the real world.” The soft bigotry of low expectations, my ass. So now what we have is the harsh bigotry of insane standards. There is such an insane drive to get kids to be able to succeed in the “real world.” But the thing is, the real world is our doing. We are the adults. The real world didn’t just happen in a vacuum. (Oh wait, the universe actually did begin in kind of a vacuum…or maybe it’s just going to end in a vacuum? Something like that. )

Sometimes the Real Worldniks remind me of that guy in Yellow Submarine, who sucks up everything in his path, and eventually, finding nothing else left to suck, he sucks up himself, and the entire picture, until you’re into a different scene altogether.

Frankly, I’m a little sick of the real world. Enough, already, as my grandmother would say.

Time for the winds of change to push the pendulum in the other direction. Or some such group of cliches.

Time to dance and be thankful for weekends. And hug my boy, if he’ll let me.

Left Out

I have never thought of Benji as a Left Brainer, but that’s because I didn’t know much about it. This blog, “Out in Left Field,” by my friend Katie Beals, who has a book coming out on the subject within the year, is a new one in the blogosphere. I have already learned so much from it. I am struggling with this very issue, as Ben goes through school, because I see how much of a different thinker he is. I see the staff in his school jumping to label him as something, to get him whatever help they can offer, or to get me to do more for him. But it is currently a big swamp I feel stuck in. Once again, there is the Ben I know, with all this incredible academic and artistic ability, and humor, and the Ben the school sees, truculent, challenging, sometimes blank, sometimes brilliant.

So much of his success depends on the subject and also the teaching technique. And in an era where we are so standards-driven, so one-size-fits-all, from our body types to our classroom performance, I worry so much about how to get Ben through middle school unscathed and fully blossomed.

Thursday, April 3, 2008

Jenny: A New Form of McCarthyism?

I only saw a few of the clips from Larry King’s Jenny McCarthy/autism show. My thoughts and responses were popping and bubbling like a freshly opened can of Sprite.

I understand that Jenny’s child improved in terms of his measurable skills. I am happy for her, and for the other children who finally do well in school and with peers. It makes your heart fill with joy to imagine that breathtaking moment when you realize that this is not going to be as bad as you thought.

I know, because I have felt that swell of happiness for my own children. Just yesterday Ned came upon the shower curtain, completely twisted, wet, and mostly detached from the rod. Nat had been the last to take a shower. Something irritating clearly had happened during Nat’s shower, and there was evidence of some struggle. But there had been no screaming, no biting, no jumping. No outburst at all. All Ned found was the curtain hooks jumbled but put back in some attempt to fix it. Ned was touched by this fumbling effort, and by Nat’s self-control and independence. He asked Nat, “what happened in your shower?” And Nat answered, “Shower curtain is tangled.” Ned and I both felt our hearts jump up to our throats at this beautiful, complicated sentence.

Oh, how Nat has grown and improved over the years! I have so many to thank: teachers who tirelessly teach him how to communicate his feelings, his thoughts. ABA for teaching us how to isolate occurrences and behaviors so that we can stay neutral and effective; Floortime for teaching us how to unite occurrences and behaviors so that we can stay connected to Nat; our families who love us and Nat and want only our happiness; a public school system that has paid top dollar for Nat’s education and never forced us to sue them; doctors for keeping track and titrating his meds to get them just right; Father Time, who has healed me in so many ways and answered so many questions I’ve had.

Not that it’s a competition, but I would go head-to-head with Ms. McCarthy any day to illustrate the growth and wonder that is Nat’s life of eighteen years. I would not measure his success with standardized tests, academic grades, number of vocabulary words, or reading level, however. I would, instead, go by the goals and dreams I have developed over the years for Nat, and see which have come to fruition. You see, that is one of the big differences between Ms. McCarthy and me: Nat is almost all grown, and we have come to understand so much about him and autism in this time. Her child is young. There is so much more life to life, God willing. Children grow and develop so much, in a matter of days, or years. We never really know what causes a burst in development. Was it the food he ate or didn’t eat? Was it a new medication or removal of that medication? Was it your new attitude of hope? Was it winter turning to spring, a shift in the light? Was it joining a team for the first time and understanding what friendship is all about? How do any of us really know? Take it from an old mother: we don’t, and it doesn’t even matter what it was, only what it is.

I and perhaps many other parents in the autism community do not think it is at all productive to fault, even by implication, parents who do not subscribe to the vaccine/mercury theories. Or whose autistic children have not “recovered.” If that is what Ms. McCarthy is doing, then that feels to me like a new form of McCarthyism, a la Senator Joe, or a new way of blaming parents, which is actually nothing new. (Thanks to Stacey Levin for pointing out this irony.)

It does not give me hope to read a book about such things; it makes my heart sink. Some kids do not “de-auticize,” NancyBea Miller’s wonderful word. Perhaps some original diagnoses were too mild, or too intense. My theory is that many of the kids who appear more typical as they get older may not have been as complicated as the docs originally thought. And vice-versa. As Nat grew older, the doctors kept adjusting his diagnosis to more and more autistic.

Ned and I have learned that growth is subjective, individual. That looking at your child as a sick person when what he has is a neurological disability was not helpful in our family. In fact, the moment that I let go of my sadness and fears about what was wrong with Nat, many things came right. Things were tangled. And now they’re not as much.

Tuesday, April 1, 2008

April Cool

In this particular video, I really like how I’m dancing. But there are a few times when I lose my way, largely because my audience keeps getting up, walking around, and pursuing Joyous House Stompies/silly talk/self-stimulating behavior. Well, tough! I need to learn how to keep my cool performing under any circumstances!

Autism and Hot Dogs: Unraveling the Mystery

The first time we ever gave Nat hot dogs, he was around 8 months old. After eating them, he crawled two quick laps around the kitchen. I remember the fast slap-slap sound of his little fat palms hitting the floor. Ned and I were so impressed by his feat, that we laughed and laughed about it, and we knew that this must mean he loved hot dogs!

The kitchen laps may have also been early stimming, the earliest form of Joyous House Stompies, which is the adult version of Hot Dog Delight. When I realized that, the other day, I had a little shiver, that old familiar, “Huh, little did I know what that sweet little HDD really meant…AUTISM” [cue minor key theme, Beethoven’s 5th or something] I’m such a drama queen! Why does every gorgeous little memory always have to play that particular tape in my head? Who actually gives a shit that this was early stimming? (Well, I do, because it is comforting to connect the dots, to put together images of the Nat I Know with the Baby Nat I Wondered About. But other than that comfort, I have a lot to say about this.)

Yes, it is important to recount those days, those moments, where something profound was happening, where your life changed forever. But it is also important for me to learn how to let that go. It gets to be like a big lump of undissolved sugar at the bottom of my cereal bowl: kind of intriguing and bad-but-good to dive into, but then, totally a downer. If you keep diving into that particular synapse stew, pretty soon that will be the only track your mind can take.

I was watching some of CNN’s Autism: Unraveling the Mystery this morning and I was thinking one thought nearly the entire time: “Can TV ever stop using the cliche of the mystery when it talks about autism?” No, what I was really thinking was for the parents on the show: “Give it time.” I found myself wishing that we could have been on that show — yeah, sure, it was fun being on CNN and the Today Show two years ago with MPWA — but what I really liked about it, was that they used the message of my book, of our family! They did not simply zero in on our grief or our expenses, but they looked at a family being a family, even with great challenge going on at times. (Don’t forget: Just A Family was my title of my book; it was my publisher who changed it to Making Peace With Autism, for better identification as an “autism book.”) For the Today Show segment, we had 15-year-old Nat running at the track, helping me bake cornbread. We had Ben on the computer and Max juggling. We talked about what was hard, and we also talked about how far we’d come — as a family, not as Nat’s Data Takers.

What I want for those young families just getting into the autism game is to understand that growth happens. For all of you. That eventually you will realize that you are a family with concerns other than autism, other than hoping your kid will “catch up” with all the others. There is a certain degree of living in the moment that occurs once you let go of some of that. And it is the living in the moment that gives you your sense of family, of having a life.

As Sigmund Freud may have said(?) “Sometimes a cigar is just a cigar.” And sometimes a hot dog is just a hot dog.

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