Susan's Blog

Wednesday, January 31, 2007

Skating Away

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.

A Brief Word From My Sponsor

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.

A Good Talk

Tabblo: Braintree Talk

I gave a talk to a group of parents and teachers in Braintree, Massachusetts on “Making Peace With Autism:  Family Life, Autism, and the Pursuit of Happiness.” This is the usual presentation I do.  I have a Power Point slide show of the family and how we have dealt with my oldest son’s autism through the years, and I read applicable sections from my book, “Making Peace With Autism” (Shambhala, 2005). (  I talk about the arc of our family life, from wondering and worrying about our firstborn; to the learning curve, anger and grief; and into where we are now —  acceptance, understanding, and connection.  There are also helpful strategies I go over, such as “trust your gut,” “determine your family priorities,” “be as eccentric as you need to be,” and “define success on your own terms.”

These talks are always very enjoyable for me and I think my audience, too.  I have been told many times that “it is as if I were speaking their own thoughts.”

See my Tabblo>

Tuesday, January 30, 2007

Perfect Dress

Tabblo: Perfect  Trip, Perfect Dress

I bought this wonderful dress in DC, where I went for a couple of days to do some networking and also just to have some fun with friends.   The entire time was all the more enjoyable for having just
the right dress.

So here I am, back home again, modeling it for Ned.  (Oh, I also got some fabulous brown suede kitten heels…)

See my Tabblo>

Saturday, January 27, 2007

In the Pink

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…

Tabblo: In the Pink

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

See my Tabblo>

Friday, January 26, 2007

Boyful Prayer

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.

What Would Solomon Do?

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)

Thursday, January 25, 2007

Getting Kids the Supports They Need

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?

We don’t want to have to learn from tragedy, but that is often the way it works in this life. Sometimes gleaning a lesson even from a tragic, senseless incident like the killing of a teen at Lincoln-Sudbury provides us with a moment to reflect on how things are in our own families, or our own town.

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

Wednesday, January 24, 2007

Un Lose Weight-Able

Tabblo: Parody

Un Lose Weight-Able  by “Be-Bouncey”

Too much heft, too much heft, mmmmm
Too much heft, too much heft
Every inch of me, stuffed in my pockets, too much heft
In my closet  — all my stuff
It don’t fit me
I’m fed up

I keep touting that Atkins line
But can you eat fat and lose weight at the same time?
It’s my fat clothes that’s in that bag
I’m getting them out
Please don’t look at my flab

Standing by the mirror,
Telling me not to eat that food
Talkin’ bout, how I’m never gonna get to eat cake or fruit

Got me to state:

You just eat soy and cheese
You just eat soy and cheese
I could have a pound of noodles in a minute
And in fact there’ll be bread in a minute, Baby

You just eat soy and cheese
You just eat soy and cheese
I could have a bagel or ten by tomorrow
And that’s why I am forever just a-thinking:  I’m Un Lose Weight-Able.

See my Tabblo>

Something Old, Something New

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?

Tuesday, January 23, 2007

The Autism Blame Game

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.

Monday, January 22, 2007

The Great Wall

Something there is that doesn’t love a wall.
— Robert Frost, “Mending Wall”

Ned, Max, and Ben painted Ben’s wall with blackboard paint. Ben is getting tired of the little boy look of his room, alas. The sweet pastel Pottery Barn duvet and the nursery colored walls of sky blue that I chose with such care and dreamy love are all giving way to blacks and camouflage greens. A little saddened by the process, I helped only at the end. Max filmed it and sped up the whole thing to Stooge-ify it. There is no audio, but you can imagine a silly ragtime-ish piano tinkling away. It’s not quite as bad as watching paint dry, I assure you!

WBUR Commentary on Local Stabbing

I wrote about the tragedy involving a teenage boy on the autism spectrum, at a high school near us. A horrible topic, by the way. Just absolutely horrible. You can access the commentary on the Internet tomorrow at this link; it is for WBUR, Boston’s NPR station.

It will air on 1/23 at the end Morning Edition, after the cochlear implants story, during drive time (6:55 a.m. and 8:55 a.m. EST)

Wednesday, January 17, 2007

Wintertime Memory

On Ugly

This blog post made me think about beauty and ugliness, and what we women put ourselves through unconsciously every single day.

As always, when I got out of bed I took a look in the mirror and assessed the “damage.” Face getting fat, hair whacked out (flat and curly at the same time) and in need of new highlights to cover emerging gray, this is too that, etc. Then I thought, “Too__? For whom? Why?” Thinking about it logically, it’s not about what Ned thinks. He loves me completely and as I am. So is it about others? Strangers? Other men? Why????

And then how to explain trying to look good at the gym, which is all women? Is it about trying to look a certain way, not for others, but because this is the Standard in my head, created by the fashion industry?

When you think it all the way through, it makes no sense at all. If a person is in a love relationship, and is healthy physically (not obese), then one is obviously fine-looking the way they are. One would think that would be enough? But of course we/I never feel like it is. I — and pretty much all of my friends — hold ourselves to that Standard. For me, I suppose it comes from television and magazines. I’m supposed to be making every effort towards that Julia Roberts/Demi Moore/Catherine Zeta-Jones look, or I’m letting down the team! I have yet to hear a woman friend say, “I’m fine just the way I am!” If we’re not working towards that Standard, then, we’re disgusting (to ourselves or maybe even to others!). Every single one of my friends, with maybe one or two exceptions, is the same, and we are not unusual. We are typical upper-middle class, college + education, raised by feminists for the most part, reasonably healthy, good relationships/marriages. So are family members. I have a cousin who dreams of a tummy tuck, which one blog friend told me she just had (post C-section) and that it is like being hit by a truck. Why does this cousin need a tummy tuck? And why am I jealous of her? I hear it in my gym, too, the whisperings of “going to do do it… ” and the only thing getting in their way is that they might die from the anesthesia. For me, it’s the death thing and the money.

Why? Why? Why? The Body Impolitic, et al., would say that this is a culture that hates women, and seeks to keep us down one way or another. A culture that teaches us to hate ourselves, to maim, cut up, diet to death, paint over, ourselves. I say that is nuts!

Or is it?

Tuesday, January 16, 2007

High Heels are Okay

It’s amazing to think that there are folks out there who believe that one size fits all. This is not true for education, for autism therapy, or for clothing. I don’t think one size even fits all for belly dance instruction!

I hate dogma — even when it pertains to belly dance. I hate feeling as if there is a mysterious canon of knowledge that will take years to be imparted to me from On High. Demystification, bastardization, adaptation: that’s my style. There are very few rules in this world, or mysteries. You have to study, sure, and practice. But at some point, you also begin to develop your own ideas and take off. That is why it is so difficult for me to find just the right teacher right now. There are plenty of wonderful teachers around, but I am still trying to figure out just what this belly dancing means to me and where I’m going with it. There is a change occurring both within me and about me. And so my needs keep shifting.

Even my practicing has shifted. Because I practice every other day for an hour, I am becoming very adept at many of the moves; my muscles respond quickly and familiarly to my brain’s commands. As an “advanced beginner,” I can follow along skillfully to most of my DVDs and classes now. I am thrilled that I have mastered so many of the basics, from A to Z: arabesques to entering with a veil to piston hips to not-quite-zilling properly.

But within me the change is about confidence and thought. I now feel like I could demonstrate moves for people and not mess up out of embarrassment. I go right into Dancer’s Pose and start. I look up and I try to smile. (One thing you’re taught early on is how to look as if you are utterly detached from your body and what it’s doing; to smile in delight at your popping hip or your undulating tummy, as if its alive!) I know that what I am doing is not something most people I know can do at all, so it is special and they will admire my skill rather than see my flaws.

In thought, I find that I am shopping around for a teacher who corresponds to my way of doing things. I no longer feel that it is okay to feel like a novice. I know a bit, now, and I want to be treated as such. I want someone who focuses a lot on performance and choreography, who is careful about form but is not insane about precision. My very first teacher said, “As long as it’s pretty, it’s right.” I like that more than another teacher who said, “You want it to look like more than just shaking it around. You don’t want your audience to think, ‘I can do that!'” My feeling is, why not? Why wouldn’t I want my audience to feel that they can do it to, and want to? Isn’t that the mark of a true artist, someone who takes you to another plane of feeling, who makes you push beyond your usual boundaries to try something new? I want a teacher who is demanding but inclusive; who praises me and shows me how to do more without my feeling clutzy. A teacher who wants you to wear fun stuff to class, not sweats. One teacher I saw said, “high heels are okay,” which made me laugh. I thought, now that’s why belly dance is for me!

Balance in all things

MOM NOS mentioned a resurgence of activity on her blog because of an old post about the film Autism Everyday, which was aired at the Sundance Film Festival. She mentions all the fiery comments she is getting from it, and discusses the issue of difficult comments. Just to be clear, I have no problem with controversial comments. My issue is with personal insults, comments about my person, my body, my face, etc., meant to hurt my feelings. Sure, I can be all Eleanor Roosevelt about things and say that I am not willing to be hurt, but let’s face it, I do get hurt sometimes. We all do.

And yet I have re enabled the comments, with Ned’s help, making it so that you must sign into your blogger account. No anonymous allowed. We’ll see if that does the trick. I doubt it, but MOM NOS is right to point out that a blog can feel lifeless without them. I don’t want to throw the baby out with the bathwater just because one piece of crap was floating in it. Balance, baby, balance.

Similarly, with raising a difficult child, you might feel tempted to see the entire experience as negative, to simply want to fight and destroy, when it is actually far more complex than that. We need to improve our children’s lives, no question. We need to fight for them and break our backs trying to help them learn and function in this world.

But — there is negative that allows you to better take in the positive. There is negative from which we learn and our experience of life deepens. From pain there can be great growth. And so, controversy and pain in our lives teaches us things, makes us think, makes us grow. I speak from experience, as a parent who has been attacked by my autistic child over the years, as a parent who has experienced destruction at his hands, mess, smearing, and then the reactions of others: ridicule, ostracism, expulsion.

But — that is not what my or Nat’s life is about. You can’t say that you hate the experience of food just because you hate the shit that comes from it, excuse my language. You can’t stop baking, cooking, and eating just because — you get my point. I take issue with the Autism Everyday phenomenon, by which I mean emphasizing the difficult and horrible of something in order to gain attention for an otherwise positive cause. Just as I take issue with the nasty, ad hominem blog comment, from which I cannot learn, and which is all about dragging me through the mud. They are not what my blog is about.

I do believe it is positive to want to research autism and figure out how best to ameliorate the difficulties that come with being wired differently. I do wish that Nat had it easier, and that we did, too. If you have a kid who hits you and others, for whatever reason, it makes your life more difficult. That is the truth. But what you do with that, both mentally and outwardly is the bigger point. The problem with Autism Everyday is that the overall message is a negative one, which reaches its nadir by having a mother talk about how she has fantasized about killing herself and her autistic child (going over a bridge with her), so driven is she by this despair. And, she doesn’t kill herself because of her other, neurotypical child. Not for any other reason, such as love for her autistic child. It is as if she has given up on that child. She does not talk about what has worked to make her life easier at other times, she does not talk about educational approaches that have helped her autistic child, or therapy that could help her or her child. She only talks about how bad it is. There is no balance, nothing to learn, no way to see growth. And that is what is wrong with that film, because they are purporting to speak for autism parents.

Despairing is quite normal with any challenge in life. Despairing to the point of wondering about suicide, even. Ugly thoughts are a normal part of the human existence, for anybody. But it is very different to make that into the overall flavor of life with autism. It is heinous to emphasize and legitimize murderous thoughts, implications of a child’s worthlessness, even if it is to raise money or awareness. That is blood money, in my opinion. That is not the way to do it. Honesty is good, going over a bridge is not. We need balance to get at the richness and complexity of life with autism or any other challenge/difference, not histrionics.

Monday, January 15, 2007

That Takes the Cake

Tabblo: Cakes We Have Made

In our house, eating is one of our favorite togetherness activities.  And eating desserts is even more important.  Our cakes are all edible, except when we use Lego men.  Ned does the ingenious decorating.  He and I come up with the concept based on what each boy wants, Nat and I bake it, and whichever boys are not having the birthday help Ned decorate.

See my Tabblo>

Things I Hate

1) Several cold rainy days in a row (although, better than snow)
2) Dieting, really dieting, and weight not budging (although, maintaining better than gaining)
3) Ben being afraid of Nat (see previous post)
4) Time on my hands (????????????????????)
5) Hair burned by blow dryer (but, I did notice that Kerastase hair products + burning from blow dryer smells like popcorn!)
6) Finished reading a great book, have to find/start another
7) No plans for boys (television, baking)
8) Out of food (but, this means take-out tonight)
9) Food shopping (however, a chance to get out and get away from boys)
10) Ned going back to work 🙁

Hit It

As the boys were all getting ready for bed last night, Nat got antsy again. He started bouncing all around, looking out of windows (presumably checking the status of various lights outside). He ran upstairs with Ned, and followed him into Benji’s room. “Socks,” he said.
Oh, no, I thought. Now he’s after everyone to wear socks. Nat wears socks to bed, but I don’t, Ned doesn’t, Max doesn’t. And I did not know about Benj.
“No, Ben does not have to wear socks,” Ned said.
“Ben will put on socks,” Nat said.
Ben started to put on socks. Ben is a little afraid of Nat. Maybe a lot. That is one of the worst things in my life.
“Ben, you don’t have to wear socks!” said Ned, gently but firmly.
“I know! I’m going to take them off now!” said Ben. Here’s the other thing: Ben loves to taunt Nat, and get him back for making him so scared. It is a cycle. The Circle of Strife.
“Ben, you shouldn’t tease him,” said Ned. “You don’t have to wear socks, but you shouldn’t tease him.”
“Ben socks,” Nat said.
“He doesn’t have to — ” said Ned.
“HIT!” yelled Nat. “Want to hit!” But he didn’t.
They came downstairs. I don’t know if Ben had his socks on or off, in the end.
Nat said, “Want to hit!”
I smiled. “Natty, that is so good that you are telling me!” I rubbed his back.
Later, when he was in bed, I went in and hugged him and kissed him. “Nat, I am so happy that you said, ‘Want to hit’ but that you didn’t hit! That is so good!
“Good night.”
“Good night, Mommy.”

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