Susan Senator

Don’t know just what I wanted
But I know, I wanted more.
–Carly Simon
I am very happy with my life. I made a list today of things that are over (like having babies, being a close buddy to Max, that sort of thing) but with which I am making peace; and things that are still with me and good (like being slim, bellydancing, having Ned, good health). I had a good mammogram today, and I don’t use the word “good,” lightly: the nurse was someone who has read my writings and she was so kind! She chatted with me through the whole grueling thing and kept my mind off my anxiety. The whole thing lasted like twenty minutes. What a gift.

I also spoke with a producer from a national show, one I’ve been on before, and she is interested in doing a new segment on me, autism, kids getting older, etc. It was great talking with her because she’s so down-to-earth and I can trust her to do a really good program. No exploitation, just honesty and also, some good resources. If I get the spot, it will be great for the book, and the advance my next one as well.

The next book is coming along great, I have about 70 pages. It has a wonderful prologue like Making Peace had, and I have really honed chapter 5, which is called, “Remember Me? The Two of You,” about fun and marriage while raising a special needs kid. All the chapters have titles that are expressions, like “Why Me?” and “Is That All There Is?” It’s the same tone and format as my other book, a narrative, anecdotes, and wisdom (my own kind, be that as it may). Of course I am going to weave bellydance into it, because it is a book about fun and happiness, but there is much more. I am also going to talk about my own process of becoming a happier person, before and during Nat and autism.

There is a lot to be happy about and to focus on. My life feels like a hearty banquet, a table set with Belgian linen, with all of my favorite people as guests. Some great Arabic hip hop in the background, playing, interchanged with Bob Dylan (before 1980). I’m wearing a Vera Wang lavendar pink tulle gown (which fits because I don’t eat any carbs and I’ve stayed this size for four years).

Anyway, I keep looking over at the other table, dreaming of cake and bread.

Why do I still feel like I want more?

Robin in the cherry tree,
Sing a little song for me.
–Laura and Susan’s nursery song from “The Baby Tapes,” c. 1964

I wish I were a better photographer, because this guy is huge! I was sitting (here) at my dining room table writing and I looked out my window at the neighbor’s lawn. I thought at first that their was a rust-colored ball sitting there, which would not be that odd because she has four kids. But a rust-colored ball? Then I thought it was maybe a pair of balled-up socks. I looked closer and saw that it was a harbinger of spring. Big time!

I love.
So what does that mean?
That love is mostly about comfort and fit
And that doesn’t match what folks say about it
I like being his best friend
Knowing I’m first in his heart
It’s sometimes feels like a sleepover party
We laugh in the dark

I love.
But — I struggle with what I don’t get
Just this one person — and never regret!
So love can’t give you everything?
It can’t always be heart-in-the-throat thrill
while also being hold-you-when-you-are-ill
— And also explaining the next Visa bill

(Yet every once and a while it is all that, too.)

I love.
Still, after so long, I dress up for him
He lets me indulge nearly every whim
I swoon in sweet joy, watching our sons with him
So — what I’m finding, about love that is true
Is the thrill of just being able to be the most you

Last Friday Ned and I noticed that Max was being kind of terse (more than usual) and even a touch snotty when he talked to us. I couldn’t figure it out. I kept asking him what was wrong, which never works. It actually never works with most people. Most people do not want to just dive into the emotional swamp of “what’s wrong” and pull out the filthy thing that has snaked its way around their hearts. Even I cannot answer that question. If I even know the answer, why in the world would I want to talk about it, feel those ugly words on my tongue? If I don’t know the answer, then I have to feel around in the evil darkness for some response. So what do we all say? “Nothing!” In a snotty, or teary, voice. And take a nap, send a nasty email, or something.

As we were getting into bed, however, Ned mentioned that Max’s online game, Uru Live, was being shut down; at least, this fan-run version of Uru is being shut down because CyanWorlds is now putting up an official version of Uru. Uru Live has generated a huge following of loyal players. It is a nonviolent game where, as far as I can tell, you create yourself as a character within the world, and you solve puzzles in the Uru worlds, and you can even make your own part of the world for others to wander through. Max has been involved with this for several years, and has made friends this way. Online friends, and sure, I’ve worried, but Ned and I have always monitored this situation to be sure all of the contacts he makes are Kosher (and I don’t mean Jewish, I mean safe and sound) and we feel that this is a unique and wonderful part of his life. It is a community of people who are very moral because they take all the Myst and Uru legends and ways to heart.

“My God!” I said. “That’s why he was acting that way!”
“Yeah,” said Ned. “I talked to him about it. He is pretty bummed.”
“We should do something to commemorate Uru Live!”

The next day I mentioned this idea to Max. I suggested we make a cake to mark the occasion. He agreed readily (cake + Uru = good time for Max). So we did our usual: Nat, Max, and I baked the cake and all the boys decorated while I snapped photos and tried not to lick frosting (but if you look closely at one of these pictures, you will see my fingers scooping up the chocolate)!

Oh, I can’t wait for May!!! Not that this has been a bad winter at all, aside from my usual mood swings. But this May there are now two things I am looking forward to: 1) My first performance; and 2) A 4-week class with Bellydance Superstar Amar Gamal.

The class I took today, which is difficult for me to get to (through Boston to 93 south down to Quincy), is taught by Sabrina. Sabrina is a spunky, sassy young thing with abs like bedsprings. Yes, she can move a coin up and down her belly with her muscles. All I got was one flip, lower ab to navel, then it hit my piercing and came to a wobbly stop.

She told me that the performance is May 20 down in Quincy and open to the public. I am going to get family and friends to come. We will dance as a class, and she said we can do our own routine if we choose. I hope I have the courage to do a solo but I may not this time. I am working on a costume for it, anyway, all in jade green-blue with silver accents.

Sabrina is funny and great at giving you choreographies. She layers the movies: first the traveling step, then add the hip circle, then the hands, then an accent hip; that kind of thing. She always does zills and veil work, in every class. The veil work — I have missed it so much! I haven’t done veil since my very first teacher, back in June. There is no way that veil can look bad. Each one of us has a different color and Sabrina taught us an entire routine around the veil, with just floaty music, no drums (a taksim). We did a hip circle, then vertical chest circle, and then a slight backbend as well as twirling to either side. Sigh. Like candy-colored clouds floating by.

Sabrina gives me confidence because she moves ahead with each class, building on the last, and talks a lot about “when you perform.” She never makes anyone feel stupid, which is the most important thing of all. I mean, why do it, if someone is going to make you feel ugly or chump-like?

Having good classes to go to is crucial to improvement. I use my DVDs when I’m not in a class, but there is no substitute for a good teacher and the live interaction, also the spontaneity. As well as the camaraderie you get with the other gals. So I am really looking forward to Amar Gamal’s class. Though an international star, she is from Massachusetts originally (after Cuba, that is), and she comes back every now and then to teach. On the Bellydance Superstars DVD she does a routine that is incredible. Her waist is tiny, and her feet skitter across the stage. Taking a class with her will feel a little like being touched by a magical little fairy. And continuing my classes with Sabrina feels like I’m being held up by a fairy godmother. Or godsister.

Bubble, bubble
Our toilets are trouble.
–William Sh**speare

As you may be aware, I live in a big house. In this house, there are four bathrooms (five, if you count the strange scary toilet in the basement but you would never, on your life, use that one). I am not bragging. Don’t envy me my toilets. In fact, don’t think this is some kind of nirvana house. Oh, it looks good on paper. And I have made sure it is very, very pretty. Every room is carefully decorated (by me, not a decorator. That is my other would-be profession, had I not become a writer of sorts, etc. As it is, I decorate my friends’ houses, for fun.), all the colors are well-thought-out with the furniture and art. But if you look close, you will see all of its flaws. Just like me.

If you focus on the flaws, as I tend to do, (alas), you will probably find that the biggest problems of all center around our plumbing. Every single one of the bathrooms has issues. First, there is the new bathroom. New! We put it in when we moved in, around six or seven years ago. We gutted the one that was there because the tub leaked to the front entryway ceiling below. It was a tiny clawfoot tub; kind of cute, but with a ramshackle shower and, as I’ve said, a leak! So, we did a whole new bathroom, state-of-the-art, all white and new nickel, new beadboard. Took me several iterations with the stupid contractor to explain that I wanted real beadboard tongue-and-groove wainscoting, not some wallpaper-thin stuff with lines etched into it. It also took me a few go-rounds with him to make him understand that, yes, I wanted tile, not some kind of fiberglass unit that I would never have to scrub! Yes, I wanted real grout that really collects mildew. By the time he was through with me, $20,000 later, I felt as if I had the (slightly crooked) matte nickel shower curtain rod wedged right up my —

But I digress. The whole raison d’être for this new bathroom was the leak. Not only a leak that you take but a leak that we got. So what happens, the moment we use the new shower? A leak!!

Even after that well-recommended contractor came back with his wall-eyed plumber (probably a clue to the terrible work he did) and fixed the shower drain, we had leaks, this time, from the toilet. It turns out, after a long winded discussion, we learned that, you should not plunge toilets; you can break the “seal,” or some such circus animal. God knows. But seal-breakage = leakage = money shrinkage.

Why do I mention plunging? Because we were plunging a lot. That brand new toilet clogs every other day. I don’t know if it’s my growing boys and what they eat, or if it is someone’s fascination with toilet paper. I can’t exactly catch them in their wrongdoing, if you know what I mean. So, every other day, you flush, and you don’t get the beautiful symphonic whoosh, you get a constipated toilet and the whole stew rising just to the edge of the toilet.

So, the master bathroom toilet sucks — or rather, it doesn’t suck enough. Which causes me to use the one near Max’s and Nat’s rooms. Not so much. No matter how often I clean in there, it is always dirty. What is it with males, that they just don’t even think about trying to aim better? And guess what else? The toilet in there is also relatively new, though we did not renovate that room (there is a huge clawfoot tub and a rubber hose attachment for the shower, but never mind, I use it only for lovely baths). That toilet clogs when the other one clogs!

So, where else can I go? Upstairs, you might think. To the Hinterlands. The third floor, which is on a different heating system, the old heating system, which still uses a converted former coal furnace and radiators. Sometimes it works, sometimes it doesn’t. It is another mystery, like the plumbing. So the third floor is cold, and frankly, so cut off from the rest of the house that it is a little too quiet up there. A little scary. But the toilet works. Provided you push the handle down long enough. But for the longest time, the faucets would moan like a dying monster when you turned them, so…

So, down, down the bolge, to the first floor toilet. If you lift the lid, it reads, in fancy black script, “Number 21,” on the porcelain lip. [It is telling you that this is the 21st circle of Hell. ] A very old toilet, original to the first renovation of The House, which was built in 1886. The first renovation occurred in 1913, before World War I; the little bathroom is a brick addition to the house (literally a brick s***house). The heat in there, just a tiny black radiator, is never on, because it is on the old heating system, which we don’t use because it is so flakey, so it is cold. So cold, that when the little faucet drips, it freezes in the drain. It might as well be a washstand whose ice I have to break every morning in order to wash, like a girl in a nineteenth century orphanage.

But let me tell you, they don’t make them like they used to; toilets, that is. This toilet is the champ. This toilet has a wooden tank high up on the wall and a pull chain and a 90 decibel whoosh that scares children, but it will flush a carburetor. And that is good.

I won’t go too far into the fact that this toilet tank was lined with new copper several times until it finally stopped leaking, and the plumber who did that gave up on us, saying, “Your plumbing is haunted.” I believe him. It is all too weird the way the toilets on the second floor clog in tandem, even though they are completely unrelated stacks. And sometimes, all of a sudden, there will be a burble and a whoosh, and the toilet in our bathroom unclogs itself.

I would not lie to you. We don’t understand it. We just live with it. It’s like something out of Harry Potter. And so, we all have our toilet preferences in this house, that kind of match our personalities/issues. Nat and I want completion, so we suffer through the cold and use the first floor toilet. Ned, because he likes a challenge, will use the new bathroom, so he just gets out the plumbing snake and unclogs it every other day. Ben uses the new bathroom, too, because he does not even notice if his stuff goes down or not, and refuses to use the first floor one because of the noise (he has some sensory issues, I believe). Max uses his bathroom, doesn’t notice the dirt, because he wants his privacy and space.

And now, flush with my toilet stories, I will bid you a-doo.

Chto Delat? [What is To Be Done?]
–Vladimir Ilyich Lenin, 1908

A lot is going on. Yesterday was miserable, a literal pain in the neck. I ached so much from that fall from skating that I had to use heating pads and get into bed. (Even so, in the morning I worked out because I missed my gym so much after being in DC, etc. Probably a mistake.) Ned helped me make dinner, it was so bad. Dinner is really my turf, but I needed a break.

I was also mad, very mad. The Boston Globe had an editorial about what needs to be done regarding special needs students, talking more about screening out dangerous ones. Read A Clash of Rights in Education and see if smoke comes out of your ears. The editors think they are being even-handed here, but they quote from some idiotic study the American Psychology Association did in 2003 that showed that special needs kids can be more dangerous than typical kids in school settings. How were they defining special needs? Who gains from this study? What do they mean by “dangerous?” These questions pounded in my head, along with my frustration that I have never been able to get the Globe to put my opeds on their page (somehow I’m good enough for the New York Times and the Washington Post, but not the oped of the Boston Globe, my hometown newspaper!) I guess you have to be affiliated with Harvard to get that.

(Oh, but now I will be! Well, not affiliated, but I have been asked to speak at Harvard Medical School’s autism conference in November. I am quite honored by that request. 90,000 medical professionals are asked to attend, throughout the country. My sister Laura (a doctor in NJ) told me she might go to the conference, which will be fantastic if she does.)

I am now working on both my book proposal and an essay for the Post. My agent has finally gotten back to me with the proposal, full of notes and comments. She loves it, but it needs a little honing. Fine, that’s what I expected from her. She’s the best. She’s also Sidney Poitier’s agent, and he’s not doing too badly these days!

My Post essay is going to be about screening: prenatal and in-school for “dangerous” special needs kids. The ACOG, American College of Obstetrics and Gynecology, has just posted new recommendations whereby they will test and counsel all pregnant women, regardless of age, for Down Syndrome. So I wonder: how will they counsel? How neutral will they be? To what end is this testing and counseling? Will there be more abortions of Down Syndrome fetuses? What happens when they start testing for autistic babies?????? George Will wrote a good piece on this, for Newsweek, but not good enough; there’s not a whole lot of his heart in it, too many statistics. So I’m doing one, too. It looks like I am becoming less and less pro-choice…

You know, I say that I hate field trips. I bitch and moan about signing the permission slips, doling out the $3.50 or whatever it costs, checking off the “yes I will chaperone” box. Thinking of what I won’t get to do because I have to go to the Science Museum and look at the dinosaur or the waves exhibit, or go to the Aquarium, around and around until you finally get to see the sharks. I’m sorry, it is one of my (many) failings as a mother. I love my boys, I don’t like class trips.

Well, today changed my mind. Not your average field trip at all. Benji’s class went ice skating at a nearby outdoor rink with their fifth grade buddy class. He did not want to skate, and was dead set against it, as only Benji can be. Remember, “normal but stubborn” was his official Children’s Hospital of Boston diagnosis. Well, my unofficial diagnosis is “determined pain in the butt.” I was determined that he try it; it had been at least two years since he skated last, a debacle if I’ve ever seen one. He was frozen; he couldn’t move in all his layers; he used milk crates to push himself around but couldn’t stand up right with them. He hated it.

I told him, “Look, I’m not that good at skating either.” A true statement if there ever was one. I have always push off with only my right leg. I cannot use my left foot for some reason. “We’ll hold each other up.” So he agreed, at last.

We suited up and ventured out onto the ice, clawing at each other for balance. I pressed my blades into the ice just to stay up, every muscle tensed, as he hung onto me, sliding through my legs and off to the side. He did not fall, though. I gradually eased us over to the side and we half-skated, half-leaned our way against the wall over to the milk crate practice area. His fifth grade buddy, Esteban, was a really nice kid who showed him how to do it. His teacher, Ms. Donovan, was her usual sweet and encouraging self, snapping pictures of every good move he managed. One time he even went backwards — not meaning to — and was okay!

Satisfied that he had mastered it, he went inside for a hot chocolate and to draw. Little B!!!! I’m so proud of my Beastie.

And then — I went out on the ice alone! I glided around with my one foot, hoping no one would notice. Eventually I thought, “Hey, I’m a belly dancer. How hard could this be, using my other foot, too?” So I tentatively extended Leftie and pushed. Okay. I went a little faster. Pushed Right, then weaker Left. Then Right. Glided. I watched Maria, another mom, teaching little Gabriele how to push off to the sides. I shakily tried it. Yes!

Maria turned and started joking with me. I turned and — boom! Down on my butt and back, whacked my head on the ice — actually bounced it! Saw stars for a nanosecond.

“Are you alright?” asked Maria and Meghan, another mom.
I smiled sheepishly. “Yeah, but my head hurts.”
“You’ll probably feel it later,” said Meghan, concerned.
“It’s gonna leave a mark, that’s for sure!” I joked, thinking that the wet was not good for my poor shearling coat. But hey, it survived a large Sprite, so what’s a little packed ice? I got right up, and did another round, determined to get back up on the horse. (Stupid horse.) My head throbbed a little but I was otherwise fine. Nothing a little soak later on in the hot tub wouldn’t cure.

I glided around, trying out my “new” technique of pushing to the sides, right, left, right, glide. Very smooth. I kept my knees soft, just like in dancing. The sun was bright, and it actually felt warm, so I took off my hat. I could have tossed it, like Mary Tyler Moore. A perfect morning.

All of you who read this no doubt have loved ones in your life. Well, Valentine’s Day is coming up and instead of a big goopy card or carby chocolate, why not make them a classy, personal Tabblo valentine, for just a dollar! Find out about it here, on Ned’s blog.

I am stressed because I’m going on a little trip tomorrow (Sunday). So of course I had to dance. I have been sewing a new costume, so all my stuff was strewn across the bed, like an explosion of party dresses. And that’s how it feels to me: like dressing up for a party.

Tonight Ned filmed me dancing, for the first time. I now have something I can study to work on my form. I can see that I need to practice more fluid veil movements, that’s for sure. And smiling…

I look like the Statue of Liberty, except she never held zills!

… See my Tabblo>

To keep you safe
I am here
You don’t even see me
I disappear
But I follow you
When you go off to school
I see you with others
You bend to their rule
I catch a glimpse
of you with some guys
I wanted to wince
–They made you cry

You’re still young
So I charged in
Mad elephant Mommy
Made their heads spin

But your brothers — well
They’re older, you see
The world where they dwell
Is off limits to me.

I decode a face
Cling to the notebook
Sift through words in space
Search in a secret look —

But how do I know
If you all are okay?
The pain, large and small
You feel during the day
That boy felt pain, too
Who understood him?
The father, the mother?
They all did what they could do
But he still killed the other.
I grieve for them both
The alive and the dead
They make me think of you
They fill me with dread.

This life is so hard
Even without blood or war
Just being you
Without feeling heartsore.

If I could
I would live forever
To keep you safe
To make things good.

Yesterday I was interviewed at length by the Christian Science Monitor about the events at Lincoln-Sudbury High School, particularly my thoughts on the exclusion of children with “aggressive” profiles. I gave the reporter a lesson in special education 101, explaining Least Restrictive Environment, which is the law of the land last I checked. Even with the bone-headed way the IDEA was reauthorized last year by a conservative-dominated Congress, LRE remains intact, which means that school systems must try to give all children access to the general curriculum to the greatest degree possible in their neighborhood schools. Inclusion is the law, lest we forget.

Getting special needs kids out of a school setting due to disruptiveness is also attached to a specific legal process, called Manifestation Determination, whereby it must be proven that a series of disruptions have not been related to the child’s disability. If the volatile behavior is found to be related to the disability, by virtue of a process called FBA, Functional Behavioral Analysis, then the team has to meet to discuss placement. The child can be removed temporarily but not permanently, I believe, until the team has agreed on such (including the parents).

If weapons are involved, a child can be removed, regardless of disability. So in the case of John Odgren, the school has the right to remove him. In the case of my Nat, they did not have that right. Nat’s FBA determined that his outbursts (hitting, pinching, pulling hair) were due to the environment of the classroom and its lack of direct behavioral support for him (poor darling). He felt out of control, the staff treated him as out of control and did not control their responses to him, and thus he became out of control. He learned aggressive behavior there, in that inadequate setting.

Although they share the same spectrum disorder, Odgren is a completely different case, from what I can tell. Reports say that he talked about weapons a lot. This should have been a red flag, but then again, one wonders to what degree he understood the impact his words had on others, considering his Asperger’s Diagnosis. One school official somewhere once said to me that he nearly suspended a kid who talked about bombs, only to find out that this kid had AS and did not quite realize how his words were making others feel. An investigation determined that this child was not a threat, and so he wasn’t.

People can sometimes tell when a child really understands the impact of his statements; but not always. That is the risk here. What we do about it is a question suitable for Solomon.

That is why I took issue with what parts of what the AANE said and did not say. By making the beginning of their statement be all about how violent behavior is not a part of the Asperger’s profile, they almost seem to be saying — and I’m sure they don’t realize this — that this boy was not one of their’s. Let me state, for my conscience’s sake, that I think the AANE is a great organization that has helped a lot of people for many years. Just today I found out that they are hosting a series of forums for helping people with AS talk about and deal with this issue. But still, regarding this tragedy at Lincoln-Sudbury High School, I wish they had said something more like this:

“Even though it is not part of the usual profile for people with AS to be violent, we want to remind others that even disabled people who do exhibit violent tendencies need help, first and foremost, rather than scorn or ostracisim. We believe in the possibility of therapy and rehabilitation, employing proper and humane strategies to ease these difficulties, in any child, neurotypical or not. We do not advocate exclusion for the longterm of such children because they need to learn from non-violent role models and be exposed to real-world challenges, but in a supportive environment.

We also wish to remind the general public that for the most part, people with AS and on the autism spectrum are more often than not the victims of bullying and threats at the hands of non-AS people, rather than the perpetrators. It is up to educators to take responsibility for such behavior and set up programs aimed at stopping it.”

–Susan Senator, Autism Mothers Inclusive (AMI)

This is my column from today’s Brookline Tab. I also have a letter in today’s Boston Globe. I am all over this thing because I am so afraid of what people will now think about disabled students, and sure enough, the Globe also has a letter from a parent advocating they get any special ed kid with a history of aggressive behavior out of the schools.

Do we offer our kids the support they need?
Thursday, January 25, 2007 – Updated: 12:13 AM EST

The question that came to my mind when I heard this horrible news story was, could this have been prevented? And then I thought, what will be the fallout from such a tragedy? Will people blame autism programs? Will they stigmatize autistic people, and their families? What does this tragedy mean for Brookline schools?

Like everyone else, I want to be reassured that this kind of horror can be prevented. I know there are no guarantees, but as a parent of a child in the high school, and as the parent of another child with severe autism, I want to know that there are enough supports and the right therapeutic infrastructure to truly protect our children.

What I don’t want to see, in Lincoln-Sudbury or anywhere else, are suggestions that we exclude the more complicated students — farm them out to private programs or “screen” them out, as one Boston newspaper editorial suggested on Monday. I understand firsthand the difficulties that autism spectrum disorder can bring, and I know that great vigilance is required on the part of the family and the school. These children are complicated and challenging, but they are not monsters. They need the right kind of care and attention. And yet there is no way that a school or a family can plan for every terrible possibility. How then does a school system get it right for all of its kids?

All school communities should be trying to understand what they can do better in their schools to nurture and protect children. Here in Brookline, we should ask ourselves if we are doing enough in terms of the social/emotional well-being of our kids, or are we too focused on high academic achievement? Several years ago, to my greatest disappointment, while I was on the Brookline School Committee, we voted to cut eight social workers from our elementary schools. We have never fully restored that program. Our Understanding Disabilities program is decades old, and does not even include the so-called “newer” and more prevalent disabilities, such as autism spectrum disorder and other neurological issues. Yet Understanding Disabilities — which is taught only once in our children’s school career, a four-week period in third or fourth grade — is one of our only townwide attempts to promote compassion and tolerance of difference through curriculum. Many of our schools individually offer excellent social skill opportunities, but there is no universal social skill-building program in the Learning Expectations.

Yes, support programs cost money, and yes, monitoring students’ states of mind is a complicated proposition, especially in the upper grades. Often by the high school level, we see the opposite: a more hands-off, teach-them-to-be-independent attitude. The bottom line is that while it may be a high school’s goal to get every child to advocate for himself and take responsibility for his own needs, there are children who are not ready. They need greater support and care. More than emphasizing what we would like to be, however, we should be focusing on what is needed now. It should be our highest priority to make sure that every student is safe: physically, socially and emotionally.

The world our children were born into is more complicated than the one in which we grew up. With Columbine, and now Lincoln-Sudbury darkening our experience of public school, we have to be brave enough to look at how we do things and make changes if necessary. We all desire to keep something like this from happening again, and to understand what we can improve in our schools. But that begins with being sure that we do everything possible to reaffirm our commitment to a diverse student body. Diversity is not only about one’s ethnic origins, but can also be about learning style.

We have so much that is wonderful already in Brookline schools. By strengthening and updating our social/emotional support systems, we may not only help prevent further tragedies; we will be growing a sturdier, healthier crop of kids able to take on anything this world demands of them.

Susan Senator is a writer living in Brookline. Her Web site is http://www.susansenator.com.

I am going to follow the advice of a good friend of mine who knows the pain of dieting, and try something new, or rather, something very old: count calories. She and I were at the gym yesterday and talking about how we just can’t lose weight. I have been doing my Atkins (of course), pretty seriously, since New Year’s, and I don’t know; I think I even gained a little recently. Nothing that shows but still, I can feel it.

More than the weight issue is the food I eat. More and more I find that I feel like a weird alient when it comes to food. I am so heartily sick of saying, “Oh, I can’t eat that.” “Not even a little bit?” “Not even.” With Atkins, every carbohydrate must be counted and you can’t go over 20 in a day. That is such a tiny number!! But I did that, for a very long time. I loved the way I was never hungry, just a little bored. I loved the narrow structure imposed on my eating, the strict rules, the discipline. Me!!! Because it worked. But now it doesn’t. Why? Why? Why? (Laura, who is a doc after all, tells me it is our older metabolism, d’oh!)…

Well, now it is more than my body’s upholstery or my soul-gaping boredom; it is about health, health, health. I just do not feel like all the soy and fat are okay. I find I crave, crave, crave fruit! Bread! Yogurt! (Yes, all of those things are very carb-y). I am sick of eating salami and gazing longingly at the yogurt.

So of course last night, before my speaking gig, I gave in and had — gasp — a Granny Smith apple! And I popped two bags of popcorn, which charmed the boys into the kitchen and we all stood around a bowl showing handfuls of the fragrant yellow salty fluffy popcorn into our mouths. Such heaven, in so many ways: the eating/inhaling; the smell of it; being surrounded by Nat, Max, and Ben, so close to me, smelling them; looking at Max and Nat’s big man hands in the bowl; Benji’s beautiful silken perfect skin; feeling my blood sugar skyrocket in utter bliss.

I went to the talk, had a good time. Saw some old friends, made some new ones. One of my old friends gave me flowers! (Thanks, J!) Didn’t get lost going home, (thanks to a new friend who is the godmother to an autistic tot; I gave her a copy of my book, long story…)even the part where you go from 1A to 1 to Storrow Drive through the former Big Dig past the gorgeous, breathtaking Leonard Zakim Bunker Hill Memorial Bridge… I drove it as if I’ve lived here for 18 years. Oh wait a minute, I have!

But when I got back from my talk, I was hungry, and then the trouble began. I had tortilla chips! I had chocolate! And Ned joined me, happy to have a pigout partner. I said to him, “You know, I’m sick of feeling bad about having enjoyed something. I am NOT going to regret eating this food an hour later.” He said, “Like Chinese food? Where you’re hungry an hour later?” And I said, smiling, “Like Jewish food, where you feel guilty an hour later.” And then he reminded me that if I was feeling bad about feeling good, was that maybe a new kind of violation of the Sweetie Treaty? How many calories is the Sweetie Treaty?

I am giving you the text to my NPR Commentary on the Lincoln-Sudbury High School tragedy. I also want to add that I am disappointed by the reaction from the Asperger’s Association of New England, who are quoted as saying in response to this that, “Physical violence is not at all typical of people with Asperger Syndrome (AS). AANE has worked with thousands of families, teachers, and other professionals for more than a decade. In that time, we have never before heard of a comparable event. We hope the public will remain open minded and open hearted, and not compound this tragedy by forming a sweeping negative stereotype about all people with AS.”

It is the first part of this statement that I have trouble with, not the rest. I think it is a little disingenuous of the AANE to claim that physical violence is not at all typical of Asperger Syndrome. I know at least two children whose behavior can cast doubt on that statement. But more to the point, what is really not helpful about this is that the AANE seems to be in effect seeking to separate themselves from those other disabled people who do have profiles of physical violence (like some people with more marked forms of autism, perhaps). The criminal defense lawyers know how to protect your rights.

Even if it were true, why set up this shaky divide? Obviously they are seeking to reassure the public, which in itself is a good thing. But what I would find far more reassuring would be a more honest stance, which would have been something more like this:

“It is true that, like most other people, sometimes people on the autism spectrum become frustrated to the point of tantrums, aggression, or other disruptive behavior. Coping with an often over-stimulated sensory make-up causes this to be an even more important issue when it comes to autism spectrum an Asperger Syndrome. We hope that the public will realize that there are many effective approaches and strategies for helping people on the spectrum handle their feelings and impulses and avoid outbursts. Employing such effective strategies is far more desirable for the diverse nation we are than taking actions that exclude and marginalize.”

— Susan Senator, Executive Director, AMI (Autism Mothers Inclusive)

And now, my Commentary:

They say that the worst thing that can happen to someone in this life is to lose a child. I think perhaps the second worst thing is for your child to have taken someone else’s life. When I heard about the stabbing of a teenager at Lincoln-Sudbury High School, I felt a chilling sorrow, because I have teenage sons. But when I heard that the suspect was a teen with Asperger’s Syndrome, a high functioning type of autism, my heart was even heavier.

Maybe this was because Nat, my oldest boy, has autism, too, though a much more severe form. He struggles constantly with his faulty neurological circuitry. I have often worried about him hurting himself or other people. And he has: teachers, classmates, family members. We have all experienced Nat’s tumultuous rages and outbursts; we all have the scars of nearly two decades of living with him.

But even so, no matter how hard it is, we can’t give up trying to get him to be a part of this world. And so Nat has come a long way from his more frightening behaviors. He has learned a lot about self control, to the point where he even has a job with Meals on Wheels.

Inclusion and independence are the biggest dreams of parents like me. Independence is Nat’s Harvard. I have always envied the higher-functioning autistic kids, the ones who are mainstreamed with typically developing children. With mainstreaming and inclusion, there is great opportunity for growth, but it is rarely easy. Parents and teachers have to find the balance between supervision and letting go.

I am afraid that the events at Lincoln-Sudbury will lead people to think that such inclusion is a dangerous thing. But the truth is, even in the most supportive environments, a tragedy can occur. Because adults miss the signs. Or because life is still unpredictable, autism or not.

Even when I feel discouraged, I can’t just surrender and hole up with him in my cozy house, away from the scary world. I suppose that is also the task ahead for Lincoln-Sudbury, for the victim’s family, and for the suspect’s family. They have to find a way out of their fear and get back to feeling safe again. We need to prevent further tragedies, but this must include being sure we don’t vilify autistic people or their struggling families.