Susan Senator

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!

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)

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?

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!

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.

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 🙁

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!“
“Yes.”
“Good night.”
“Good night, Mommy.”

We took Nat and Ben to the movies, to see A Night at the Museum. As soon as we sat down, as predicted, Nat started to say, “Take off coat, take off coat.” I said, “I am, I am!” And unbuttoned right away. Ned did not; he noticed that Nat did not have a straw for his soda and he stood up to quickly get one — wearing his coat.

As soon as he started down the steps Nat turned to me and smacked me in the head, hard. “Nat, stop!” I said quietly, and he hit me again. I jumped back and overturned his soda, onto my lap, my seat, and my shearling coat. Nat hit me again. I grabbed his hands, quietly saying, “Stop.” He said, “Yes. Coat off.” About Ned, who wasn’t even there. I was spitting nails, I was so furious. I sat there holding down Nat’s hands. I must be pretty strong, or else he was letting me do it.

Ned returned and I said through my clenched teeth, “Take off your Goddamned coat.” Ned said, “Sue, just a minute!” But then he did. I said, “He kept hitting me. The Sprite spilled all over my coat. Excuse me.” I got up and ran out to see what I could do. My whole right leg was wet and sticky. I shook the coat and drops of soda sprayed outwards. This better not be ruined, I thought. I also thought something else that I am not going to put into writing.

I called my friend Sheila, who has a kid on the spectrum, not quite as far “down” the spectrum as Nat. I have known Sheila for about fourteen years. We have been through it all: bolting, children getting lost, children getting taken out of the park, children being ostracized in the park, children being expelled from schools that claim they are helping special needs kids. or ALL children as my school system is into saying, children who try to beat up their mothers and fathers, children who break their siblings’ toys, children who smear, children who yell obscenities that they don’t understand. Sure, all kids do that stuff. But ours have done it a lot more.

Sheila laughed sympathetically, and said, “We’re going through it too, you know.” We talked for a little and she let me vent my rage, all the while I was shaking out and wiping my coat off. But I was afraid to leave Ned alone to deal with Nat, who might have gotten upset by my walking out. So I went back in.

The movie started up and I started to cry. And this was a comedy, too. Ned saw, of course, and said, “Nat, give Mommy a kiss.”

I thought, “Oh, Jeez, like that’s going to help.” Nat leaned over and kissed me gently.

Well, it helped a little, I guess.

Yesterday was feeling great. We were all just home, hanging out. I got a call from my close friend R to go to the gym; we had not seen each other for over a week, which is unusual for us. So, a lot of laughs on the treadmill and then I moved to the Stairmaster, gasping laughs and intermittent talking. We did the hot tub, catching up on local politics and school issues, nearing hysterical laughing while the hot bubbly water churned around us. Is there anything better than a hot, charybdis-like soak (minus the deadly vortex mishegas) after a killer workout, with a friend who just has the best sense of humor? And as we were dressing, more laughing; I told her about an invention I have in mind — nothing important, folks, just silly and fun. R’s husband is a patent lawyer so she says I should talk to him. Maybe I’ll become so rich I could self-publish my crappy novels, create my own magazine (Fabulous over Forty: it would feature real women, not models, wearing fantastic clothes and with all kinds of articles about life over forty, but not in that stupid More Magazine/Hollywood/O way; there’d be disabled people, fat people, short people, but everyone would look their absolute best and would write something amazing), etc., etc., hire a house cleaner, start a school for autistic teens, blah, blah, where’s my meds.

Then, (back to my so far, so good day), Ned got Nat ready for his playdate! He was going to the movies with DJ, his first friend (this friendship started with Special Olympics gymnastics, when Nat was 15). DJ and Nat love the same movies and are about the same level expressively and behaviorally. DJ’s a bit more academically-inclined, but I feel that Nat is a bit more socially in tune with people. Enough with the autie-compare!!!! Point is, I love DJ because he is Nat’s friend and it is so great to see them together. Tommy, DJ’s “buddy,” (a student in his early twenties) took them to the 1 o’clock showing of Charlotte’s Web, only to find it was a 2 o’clock showing! But Tommy just winged it — brave soul — and took them to a book store!!!! Not exactly Nat’s favorite place, and needless to say, with that abrupt change of plans, everyone within a one-mile radius was in the Pinching Zone.

But nothing happened. Nat was able to shrug it off, knowing that he had to be calm if he wanted to stay with DJ and see the movie. That’s my Miniman!!!!!!!!! Does what he can.

How wonderfully different, on so many levels, for Nat to be the one out and about with a friend, and Max and Ben home without much to do except puppy around? I think we all felt a very sweet release to have things like that, just the four of us, but also knowing Nat was happy. A rare, blessed moment.

Today it’s Pinocchio
Tomorrow, Charlotte’s Web
But all in all I never know
What’s really in your head.

You have the loves of childhood
The body of a man
I love and hate the innocence —
My real-life Peter Pan

How to measure value?
What deems a life worth living?
Is it about what we all can view;
Or is it about what we’ve given?

Lately I wonder what it is
I’m put on earth to do
To make myself happy, find my bliss
Or make you a better you

Sometimes it feels
Like your stagnation
Closely matches mine
My mind just reels
At all the thinking
Sitting, spinning wheels
The days that stretch like worn gray rubber —
The horror of wasted time.

I am thinking that I could be an Autism Organizer, along the same lines as the old union organizers. This is something I’ve done in my own town, and something I’ve done with other causes. I’m good at taking an issue, tapping into the collective frustration in that group, and organizing the people involved into a group. Then I advise them as to how to hone their message and take it to the powers that be for change. We now have Brookline CARE in my town, which I co-founded, (Brookline Coalition for Authentic Reform in Education), primarily to fight the high-stakes use of our state exam, the MCAS. (I have written about the MCAS many times; it is the misnamed “Massachusetts Comprehensive Assessment System. It was originally supposed to be a “comprehensive assessment” instrument, meaning a system of multiple assessments. Now what that has come to mean is many, many standardized tests! Rather than looking at student work, teachers’ evals., portfolios, oral presentations…)

Because of Brookline CARE’s advocacy, the town of Brookline has been on record for several years as being opposed to high-stakes testing, and in favor of multiple assessments. Brookline has resisted changing its excellent curriculum to fit the state Board of Ed’s idea of Euro-centric, drill-and-kill education.

And recently, I have been an advisory part of the formation of COBAP, Coalition of Brookline Autism Parents. This group has a mission statement now and an organization and a yahoo group that is private. They will be meeting monthly with the Special Education superintendent in our town; we just did the other day and it was a very successful start. We have even managed to wrest some budgetary changes out of a very tight fiscal year; at least, that is the intent. The School Committee has to approve it, still.

I will also be part of forming a tax increase campaign in our town, when the time comes. I love organizing people and creating groups.

I have been on the School Committee, I’m a Town Meeting Member, and I have written for the local paper for years so I can advise on all of these aspects.

So why not put my energy where there is a real, aching need? As an Autism Organizer. As it is, I get questions from readers quite frequently about what to do in their town and I advise them accordingly. I don’t want to be an advocate for individual families so much, although I love to do that, too, but rather, for groups who need to get their school boards and superintendents to listen.

The whole problem is, how do I get to these families? How do I get paid?

But if you have a group of parents and you want to organize, I’m your point person. Spread the word!

I was tagged by Bob to do Five Things You Did Not Know About Me, which I’ve done before, so I’ll have to try to be original (although that was Five Weird Things…).

1) My best friend from age 11 until age 18 and I have nothing to do with each other and have not spoken in years. Her choice, not mine. I still dream about her sometimes.

2) I had a heavy-duty crush on this friend’s older brother for that same amount of time and he was only four years older than me but never gave me the time of day. Yet his older brother, who was two years older than him, took me out once or twice.

3) I recently looked up the former crush on the Internet and contacted him via email. I sent him one of my best knockout photos. That felt far better than it should have.

4) I have written five novels: Two historical romances and three contemporaries, and I do not know what to do with them, if anything. I can’t seem to make myself read through them and improve them and then submit them. Anyone want to do it for me?

5) My first job was concession stand at a movie theatre. The manager was an idiot, who had a policy that if we were short at the end of the night, it would have to come from our paychecks! I was never short until one night, when this guy counted and recounted the money, getting different numbers every time, and he blamed me. I refused to let him take it from my paycheck and was fired. I walked past him into the theatre and watched the movie for free. It was “Love At First Bite.”

I might bring back the Comments. I say that nervously. I have felt so peaceful without them. But people tell me they miss them and I admit I feel a little too Zen-like this way, as in, if a blog calls in a forest and no one comments…

I will speak to my gurus about how to make it so that I can control the comments more. And, uncharacteristic of me, I will sit with that information and see how it feels. Thanks for your patience, if you have it. It’s a wild ride, this blogging world! (And just about anything else I do.)

Post-Workout

See my Tabblo>

My sister’s kids are very special. As with all children and me, it took me a while to really get who they are. Of course, that is because kids are just small people, and they are every bit as complex as grown-ups, but we (I) tend to forget that.

Laura’s little girl is kind of magical to me. She is the closest thing I will have to a daughter. But I think that even if she had been a boy I would have felt this way. She has a round head, creamy-dusky skin, messy curls, and something very familiar about her. Her eyes take it all in and think about it.

Kimmie was Benji’s first friend. Born just a few months after him, we put them together very early in life. Back then I was afraid that Benji was going to have some social deficits, because he seemed very focused on some things and not at all on others. Sometimes I could not get him to answer me. You know what I’m saying. I did not know who Benji was until more recently; I did not know that this is just Benji and there’s nothing to be afraid of.

But Benji showed very little interest in other kids, such as the children in his music class (he was 6 months old when he started music). The other kids seemed to enjoy each other more easily, but I remember Benji actually growled at them back then! So I did not get it.

With Kimmie, he always seemed relaxed and fascinated. Maybe he felt that she was like a sister, a part of him. Maybe it was her easy personality, her quiet thoughtfulness. Whatever it was, the two of them could just be together for hours. Even before they did more than parallel play, they could be in each other’s company and be happy. I had never seen anything like it with Benji and it gave me such hope. I knew that if he could have one fulfilling peer relationship in his life, he’d be just fine. And so he did.

Kimmie gave Benji the gift of first friend. We all remember our first friends. As they grew, they continued to share interests and be extremely comfortable with one another, like two parts of the same person. Funny thing is, sometimes Kimmie reminds me of me somehow, even though she looks like Laura, and Benji reminds me of Laura! Yet they rarely fight. They just sink into where they left off even though they see each other only a few times a year.

I adore my niece and nephew (whom I will talk about another time), both for who they are and for what they have given to me.