Susan's Blog

Sunday, April 8, 2007

Our Passover

This year we had our Passover seder towards the very end of the holiday, because that was how we could manage to get everyone in one place at one time! I invited my Aunt Georgia and Uncle Gerard (Mom’s younger brother, you can really see the family resemblance), with my cousin Jessica and her toddler twins, Emily and Nick, who were the special ingredient that made the holiday that much more tasty. We had 16 people in my dining room! Whew! But what is a family holiday dinner if you’re not all crammed in? Dayenu!

Tabblo: Our Passover Seder
Thursday, April 5, 2007

Oprah Speaks

Oprah covered autism today, as she said, her “first time ever doing a show on this subject.”
Hmm, where has Ms. Winfrey been all this time? Didn’t she get the memo?

1) If every twenty minutes a child is diagnosed with autism, is it time that we adjust our definition of “normal?”

2) Why is it, when people speak on talk shows about autism, the emphasis always is on what the parents have had to give up, instead of what they have gained? As if we were all promised one particular kind of life. I understand that everyone has the right to feel bad, and complain, and grieve for the life they are not getting. God knows I do it often enough, no argument there. But it is also possible, over time, to move one’s focus, and reflect, instead, on how autism is the road given, and that there are no guarantees in this life. (See this Sunday’s April 8 Boston Globe Magazine for more of my thoughts on this point.) And that this particular road is rife with potential, happiness, and growth.

3) I wish I had never said to little Ben, five years ago, that Nat’s “brain is broken,” in order to explain autism. I heard it on television just now. “His brain is messed up,” said only sibling about his autistic brother. Why is there so little thought given to “different wiring,” and acceptance? Is it that our society is so hellbent on everyone fitting in and being perfect? Every kid is gifted, every kid is high-functioning, every family is trying to keep up with the Joneses, and so when something overtly different comes along, it feels like lives are coming to an end. I really believe there is too much emphasis on everyone being the same. If you are a boy and you don’t play sports, you’re a nerd. If you’re a girl and you don’t like pink, you’re a tomboy. If you’re a boy and you do like pink, you’re gay. Everyone is so quick to sum up and dismiss. Autism and quirkiness become just another way to sum up and dismiss: “Lost Cause.” “Weird kid.” “In his own world.” “Tragedy.”

4) The “Can you just…” part of the show was excellent. Parents talking about how others judge them for their kids’ behavior. Why are we all so f***ing judgmental of each other? I actually loved hearing Alison Tepper Singer advise the public to say simply, “Do you need help?” Rather than scorn and scowl at us. Difference is so hard for us to see and tolerate. But you know what? Tolerating difference is supposed to be the American way, although certainly every single different group (immigrants, blacks, women) has had to fight for their rights. So now it is the auties’ turn!!! So get with it, America!

5) What is amazing to me is that sooooooo many families are getting home therapies and supports, across the country! Things have improved in that regard since Natty was little and there were few providers anywhere. With the exception of what the May Center provided when he was 5, I had to make it all up, hire college girls and train them the way I saw fit!

6) Early Intervention again! Quit hocking me with the Early Intervention! Just do this early enough and your kid will be mainstreamed! Oh Joy! The Mainstream Classroom is the new Promised Land. But then you go neurotic trying to intervene enough and correctly. And if your kid does not get mainstreamed, did you fail? Did he? How does one interpret success and failure here? Nat is living proof that you don’t need to worry so much about a kid not getting help “in time.”

7) I like the way the show ended with every single parent talking about the gifts their autistic children have given them! “He has made me more spiritual,” “He has made me look outside of myself,” “He takes people just as they are.” “He has given me someone to love way beyond what I ever thought possible.” Amen.

8) I watched the show with Nat — ironic, eh? — and wondered what he thought of it. I said “Do you know what autism is?” He said, “Yes.” I told him he had autism, and that that was fine. And later, at one point I said that I love him, I smiled at him, and said, “It’s not bad like that, Nat.” He smiled back at me.

I give her a B. I think she tried to emphasize hope and good efforts, she tried to steer clear of the cause controversies, and she did not go for too much melodrama. The B is because she had no examples of older kids and no autistic people as guests. Not sure what Nat thought, but he is still sitting in there looking happy.

When Autism Really Speaks, Do We Listen?

The sun just came out, first time in days. It has been a typical cold New England spring. Everything greens up and grows in spite of the raw wet weather, or maybe because of it. But I tend to shrivel up a bit. If I were a flower I would be a deep pink Oriental poppy, that needs full, hot open field sun of late June, and is just a little bit dangerous if used the wrong way (heroin is made from it), and is a bit exotic. Parts of it are ugly and strange, like its spiny, spiky leaves. I would never be a bulb that flourishes in the cold and must stand there shivering in the wan March/April sunshine, nothing but hardened grass or mud around your feet.

An important thought came to me during this very indoorsy, introspective period I’m going through. I was interviewed yesterday by a very bright and empathic young man from the Seattle-Post Intelligencer. We talked a bit about the organization Autism Speaks. I realized, in expressing my thoughts on Nat and autism, that actually there were some commonalities between that large organization and me. We start from the same point, I believe, which is that we love our children and desire to help them. I think it is admirable that Autism Speaks seeks to improve the lives of people with autism and their families. I, too, do everything I can to improve my sons’ skills and their strong points, so that they may lead full adult lives. Nat needs more help than Max and Ben so far, in that he has problems communicating the way most people around him do. Even if he does have his own language, to refer respectfully to Amanda Baggs et al., he still needs to learn our language, the speech of the NT (Neurotypical) world. The NT world holds the power for now and a lot of his success will depend on his ability to connect to and access the NT world. You go to a foreign country, you do better if you speak the language and follow the customs. Sure, you can hope that others will know your language and tolerate what you do, but you can’t depend on that.

Autism Speaks, however, diverges from my interests when they talk about the end goal being to eradicate autism. I do not see that as the end goal. I believe instead that the goal should be bolstering the skills and abilities and supports of people with autism, while at the same time, seeking to shift the view of the rest of the world to a more tolerant, accommodating one. The goal can’t be to wipe out autism because that assumes that autism is an evil thing, a scourge. Many people with autism who express themselves do not feel that they can easily separate their autism from who they are. So how does it feel for them to hear autism described as such? That is what gives me the most pause. What is personality? What is personality with disability? Where is the line? Shouldn’t we all be concerned about how hatred of autism feels to those with autism?

I wish that the people in that organization would consider this. Because I think they mean to do great things, and have the muscle to do so, but they cannot forget an important part of their equation: the autistic people themselves, and how do they feel about autism.

Nor am I saying that I love autism, however. I love Nat. Autism is a part of who Nat is, and I have to figure out how much of that I accept and what parts I try to help him change. Any parent tries to do this with any child, whatever their issues, diagnosed or not. I see how Nat’s wiring hinders him from doing things he would like to do, express himself in a way that we can understand him. (And our wiring hinders us from understanding him better!) But as I have said above, the mainstream world requires certain skills for independence and a full life, and I want that for Nat, so I want to do what I can to give him those skills. NOT, however, at the expense of his self-esteem.

Nat has shown a remarkable ability to adapt to the NT way of life. And I think that this makes him more comfortable, and proud of himself, to have things go smoothly. So I guess he is the more flexible one of the five of us because he has had to learn our ways and we have hardly scratched the surface of his.

Just today he did his entire morning program, completely unprompted. Out of necessity, because his bus was here and we were oblivious to it! We were all eating. Finally he said, “YES! You need your pills!!!” So I jumped up and congratulated him for telling me just like that!!!! And then he said, “Get ready, your bus is here. Bye Daddy!” He did it ALL!!! (Except then he went out the door without his coat. But that could be because my Natty, my tall yellow sonflower, is perpetually hoping for warm sunny weather, too.)

Wednesday, April 4, 2007

(Not) A Total Slump

All she wants to do is dance.
Don Henley, who is a bit of a turkey, but who nevertheless does have a lovely, satiny voice and some great songs to his credit.

It’s a total slump. Well, not total, or I wouldn’t be writing this. I am in writer’s limbo again, waiting to hear from my editor about the proposal for the Fun book, and waiting to hear from some people at Special Olympics about a potential project.


In my tired and blurry state of mind I have ignored my column in the local paper because I cannot rouse myself from this funk to address all the issues that need a hue and a cry. The budget is going to hell; the town is raising all kinds of fees and such to pay for its services, and somehow it takes some kind of Committee to make happen what should be obvious: we need to raise taxes beyond the annual 2.5 percent the State allows us. And for that the citizens need to vote to override the current statute. To get an override on the ballot, the Selectmen have to be convinced there is a need and for reasons only known to the few who cherish the minutiae of local politics, that board is not yet convinced. They have convened a Committee, as I’ve said, of “neutral” citizens to “look into” the Override.

I find it really ironic that in politics, if you care too much, you are often considered a kook, or marginalized. I went into local politics with one burning issue on my mind, and that was how my town ran its Special Education program. I was told over and over again that I could not be a One Issue Candidate, (gasp) and that I had to care about many things. Of course I cared about many things; it’s just that the real need was attention to SPED.

I found, over the years, that I had to find ways to suppress my passion for Special Education to gain Credibility with the rest of the School Committee. Meaning, I couldn’t care as much, or at least, I was not to act as if I cared. The more effective politicians on the Board or anywhere else for that matter, I would wager, don’t care deep down about most issues.

I know I sound cynical, and I suppose I am a bit. This was my experience, five years in local government. I had to “broaden” my interests, learn about how all the programs intersect, before I could be listened to for my views on Special Education. Those who had no such anger with the system had a much easier time than I on the Board. I spent so many years enthralled with the power base in my town, trying to become a part of it and influence things. Only to find that one person can only do so much without being in the inner circle of power. By the time I was close to the inner circle I was burned out and going on book tour.

Bottom line is, our School Committee does not want to advocate for more money. They are far too political for their own good. They want to do things “the way they’ve always been done,” and not make waves. They want to wait and go with the system. But what’s happening is that services and supports are being cut – for regular education and Special Education – and it is all of our kids who will suffer from their meekness. Because if the School Committee do not make their case, some of the Selectmen do not believe that there is a need for an Override. And then there won’t be money for FY’09.


Why am I thinking about all this now? Because I can’t get angry enough to write a column. I feel tapped out. I go to almost no meetings. I have not been hanging around with my political friends. I am tired, tired, tired. Tired of the stuff I’ve been so involved in for so long. Because my interests are shifting. Because I am changing.

I’ve been turning inward, to find and work on spiritual, physical, and active beauty. I’ve been losing weight, shopping for the house, and dancing. I have been peacock-feathering my nest: buying furniture and accessories, the things I have been putting off for a few years while our budget was leaner. Today I bought some gorgeous sage green silk pillows and a periwinkle throw. New white slipcover, new bronze lamp and heavy pearl silk curtain from RH. Ned bought me a huge bowl of popsicle colored hyacinths, that smell the way they look: sugary and cool. The living room is so beautiful I keep wandering in there and just looking around, drinking in the rich color and soothing whites.

The only other thing I want to do is dance. It makes me feel more than alive, it makes me feel on fire. Some days I dance in the morning and then again at night. In the morning I drill to my Arabic hip hop, all the leg work: hip clicks, hip hits, Egyptian walk, maya walk, twisting raquias, drop-kick. (This I call an Israelites’ best revenge, a la Passover: do Egyptian belly dance with a passion, to celebrate our freedom from being enslaved by the Pharoah!) And then at night, put on a costume and dance more improvisationally for Ned upstairs. (Just rattling off the names of the moves makes me feel happy, and the dance-lust quickly rises to try something.) Every night before going to bed I pull up my camisole top to see my belly and I practice a little more in front of the cheval glass. Ned invariably catches me at it and says, “Ooh! A belly dancer! Cool.” Later in bed, I rest in the crook of his arm and he says, “I think it’s really cool that you belly dance.”

I did a session of belly dance with Nat. I tried to teach him some of the most basic moves, like knee shimmies and stretches with arms. Funny how the male body has a much harder time articulating these sinuous, curvy moves. Nat tried really hard, but could not do much of it. He still loves to watch, however. He grins from ear to ear. It’s hard to feel like he is not laughing at me! That’s because I still sometimes feel a tiny bit silly and indecorous doing it. Then I get over it.

It is so different working out at the gym from being in my belly dance class. At the gym, the focus is so much on perfection, driving yourself, punishing your body into shape. So many women, even if they look kind of like magazine women, feel that they don’t look good. Even the surgically altered, spa-enhanced ones. They invariably cover up in baggy tee shirts and work out jut to get through it. Even in my belly dance class at my gym, the women joke about how they don’t want to see themselves because they don’t look like the ultra thin and young instructor. They look at me in my bra top, belly showing, pierced navel and all, and they stare. I probably am easy to dismiss as a “Midlife crisis type.” Sure, I’ve been through one of those. But there is so much more than that. I look at them and I want to ask, “How can you believe you are ugly? Who says how a belly – or a woman – is supposed to look?”

In my belly dance class it is as if they are all from a blissfully different planet. There was a very heavy woman once, and all anyone could talk about was how riveting her performance was, and how great the shimmies looked on her body. It was true! That doesn’t mean that the slim ones don’t look great, they do! I just feel very comfortable in there showing my voluptuous gut and falling on my face. It means I am immersed in that culture and I am relearning things, from body image to body movements. I’ve been practicing with a dowel or a book on my head to keep my upper body “quiet
.” It has done wonders for my bearing. I feel more elongated in the middle, more in control of top and bottom halves.

I guess it is not a total slump I’m in, because I am happy, in a very quiet way. I have never been in better shape, and I have never felt more beautiful, and never more surrounded by — steeped in — female beauty. It is interesting to me that I began this journey of self-expression and exploration by venturing out of the house and into politics, which led me to become an acitivist and writer, which then led me to explore even notions of body image. Which brought me to dancing, the ultimate in self-expression.

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