Susan's Blog

Monday, November 12, 2007

Purple Passion

My solution to feeling utterly overwhelmed by the upcoming 18…

The Guardian

(Note: Nat’s birthday is not until Thursdsay, the 15th, but as you see, it is with me now.)

What else You got?

And now —
The birthday they all wait for
The Big One
Teenager shrugs into Adult clothing but somehow it fits

Pen on paper, scratching lines into my face and my heart
until I am bleeding ink
And instead —
he is mine forever.

But, well, he always was.

Sunday, November 11, 2007

Pear, Pomegranate, Aloe

Ned and I took a friend out to dinner last night, at one of our favorite places in the South End. Even our drinks were beautiful!

Tabblo: Pear, Pomegranate, Aloe

Birfday is coming

What do I do? What would he like? How do I make this birthday special for him?
He said, “frosting. Birfday cake.”
Ned said, “What color frosting?”
Nat said, “Chocolate and vanilla, chocolate and vanilla. Bake Nat’s birfday cake now, yes.”
Ned said, “We could make him a cake every day this week?”
I said, “I could.”
I have bought him one book, National Geographic’s Planet Ocean, a huge tome of simple questions everyone wants to know about the sea, with gorgeous glossy photographs and answers.
I am thinking about renting a moonbounce, and having one or two of his friends, but it is cold out.
On his birfday I will be like clockwork. All meals served and cleaned up on time, all family members seated on time, using salt, eating correctly.
I will probably play a certain song that was on my labor tape and cry a lot, remembering. But not while he’s around, because he hates it when I cry.
I will try to guess his silly talk, because lately that makes him laugh and laugh.
I will look at his baby pictures and the video of his bris with him.
His teachers will throw a big party for him in school and invite other classrooms to attend.
I will hug and kiss him a lot.

Saturday, November 10, 2007

Feeling Feeling

I had lunch with a friend yesterday and we got to talking about feelings, and what they really feel like. It was surprising to me to realize that I never actually simply feel my feelings, without attaching some kind of context, explanation, and most likely, action to them. What is it like to just feel feelings? What do they feel like?

I have run the full gamut of feelings in the last few days, because of a series of unfortunate events and the time of year (see book), and so it was an interesting exercise to me to figure out what I was feeling and when, what was that like in my body, rather than focusing on why I was feeling it, and what to do about it. Giving myself the time to simply be aware of emotions and feelings is a way of taking care of myself.

Here is a catalog of what I discovered, in terms of what my feelings feel like and where they tend to reside in my body.

Happiness: warm, sleepy, still, dreamy, present, covers, pillows, bath, soft, around the mouth and nose
Anger: on the edge of something strong, in belly and throat, also behind the eyes
Sadness: a silvery pulling downwards from throat to chest/heart
Confusion: masks sadness and anger, deep inside head and behind the eyes, forced space between thoughts

What do you think? (Feel?)

Friday, November 9, 2007

1,000 Words

Wednesday, November 7, 2007

Solipsism, autism, and Jimmy Buffet

I don’t know
I don’t know
I don’t know where I’m a-gonna go
When the volcano blows.
— Jimmy Buffet

The other day, I heard Nat whispering, “I don’t know, I don’t know, I don’t know where…volcano.”
I said, “Nat! I know that song!” and startled him out of his Parrot Head world by singing the Jimmy Buffet song to him.
“No ‘I don’t know, I don’t know,'” he said, but he was laughing.
Ah, Nat, your mouth says “No” but your eyes say, “Yes, yes!” So I kept singing it, and he kept laughing. Max looked on, smiling. Ben was quiet.

We just do what we can to be happy. In the end, there is only oneself and loved ones to rely on. Though we may find others to help us and to connect with us, ultimately, they are few. I think in some ways Nat doesn’t know that at all, and in some ways, he knows it better than anyone. Full-blown autism can be like pure self-ishness (in a non-pejorative sense, meaning, that it is all about the self, almost like solipsism ) and on the other hand, autism can be a kind of pure self-lessness, whereby one is utterly dependent on, or at the mercy of, the forces around one.

The solution to my Time problem (I lack a crucial fifteen minute transition time from Ben’s therapy ending to Nat’s coming home) is that I am not going to hire some fabulous young person who will figure out just how to be Nat’s buddy, keep him calm and happy for those fifteen minutes. I met two people yesterday, and even though they were kind and smart and willing, I just did not feel that I could entrust the situation to them. Call me a clinging mother but I would rather do the job myself and be all tired out but certain everyone else is alright, than let go and let God. Or let go and let Northeastern Students. I know, I know, one day Nat’s not going to have me around, but I — evil genius that I am — I am working on never dying. But then — oh shit — that would mean I would have to experience my loved ones dying one day. Okay, that’s not going to happen, either. Seriously, how in the world do I solve this one? How do I prepare Nat, Max, Ben, or me for that day?

Don’t think about it, is what we all say (unless we are Buddhists or something). When Benj realized I was going to die one day, the tears splashing his milky cheeks were delicious drops I wanted to revel in. I told him not to think about it, but that yeah, it was true. But a long way off. He said, “What’s the point?”

“To live and be happy while you can is the point.”

The trick here is that nothing huge is going to get resolved in a few days. I find that to become ready for big letting-go-type things with Nat, it’s as if an ocean has to pass over me first. Wave after wave of experience and event must thunder past me and over me, and I have to learn how to first tread water and then to actually swim in the stuff.

Extended metaphors aside, I ain’t ready and neither were those students. So, I worked out a solution with Ben’s therapist, whom I adore. (She looks a bit like Laura, small and scholarly, and smart and caring. She also wears terrific little jackets. Anyway, Ben loves her and I know exactly why.) So we all flexed a little, and here I am at home with two of my sons and the seas are calm, for now.

But I don’t know, I don’t know…

Monday, November 5, 2007


Trouble with the Baby Bellies is, I don’t know what progress is supposed to look like. I don’t know what my goals should be for them, or how to get them there, or how to judge if they are there. This is the same thing I felt about Nat, way back when he was first diagnosed. No one could tell me what he was capable of, what level he was in any area. I was to use my intuition, guided by knowledge, and decide for myself what approach worked and what did not.

That is a lot to put on a parent, but that is why when you sign on for that job, you’d better be a mensch, at least some of the time.

I signed on to be a bellydance teacher, and I want to be a bellydance teacher, but I have very little teaching experience. I am used to giving talks, lecturing, or else teaching my own children. Having an interactive class is new for me. I would like to become a better teacher.

The Baby Bellies are first and second grade, allegedly neurotypical. But I could not reach them today. I almost could not engage one of them at all, and another disappointed me by clowning a lot. I didn’t want to be too much of a firm presence because this is supposed to be optional for them, pure fun. But maybe next week I will be a bit more demanding because maybe they will find it more fun if they are made to focus and progress. Which brings me back to the beginning…

Wanted: 15 extra minutes/better world

That’s all I’m asking for. I need those 15 minutes on Wednesdays so I can get Ben home from therapy with a few minutes’ buffer before Nat gets home from school. Lately the driver had been bringing Nat home at 3:45, getting him 15 minutes late from school, and this had worked out perfectly for Ben and me. Prior to that, Ben had been getting very anxious about going to therapy, because he was afraid we’d be home late for Nat and Nat would have a tantrum in the bus if I was not there.

The school administration seems pissed off now because I did the 15-minute buffer thing. So now I have to go back to the 3:30 drop-off, and find a way to appease both Ben and Nat. I think I am about to hire a young man studying to be a physical therapist to come and work with Nat as a buddy. Maybe he can get to our house at 3:30 and bring Nat inside, before I get home with Ben. But then, of course, I’ll be stressed worrying that the new helper won’t be able to handle Nat on his own.

Where’s Max in all this? Off with his friends. That’s as it should be. Yes, I could ask him to do this for me, but actually he gets scared by Nat’s tantrums, as big as he is. It isn’t about size. It’s about not knowing what, exactly, to do. It is upsetting for everyone. I don’t want that for Max.

So in this game of who has to pay for it, who has to take the punch, it will always be me, because I’m the mother. I’m the one who gives the biggest shit, so they’ve got me by the balls, and believe me, I’ve got huge metaphorical ones. Yeah, I’m pissed. I need a more understanding world; anyone know where I can find one?

Saturday, November 3, 2007

Pas de Vembre

Today it really looks as if there were no more vember. There is only a raw, sticky rain, the kind that pulls down the remaining leaves and mashes them into the ground.

So what did I do on such an ugly day? I bellydanced for three hours, at a workshop given by Bellydance Superstar Rachel Brice. For those of you who don’t know, Rachel Brice is probably the number one tribal-style bellydancer anywhere. Tribal is an American contemporary dance form, derived from gypsy, Indian, and other forms and melded into bellydance. You get a lot of sinuous snakelike and very slow movements to music that sounds like garbage cans clanking around in a puddle. It is very freaky in some ways; the girls often wear hairpieces of rasta-braids, beads, ribbons, and feathers, and belts of cowrie shells and lots of metal. Tatoos abound, especially on backs and bellies.

Rachel Brice is a fantastic teacher, who knows exactly how to describe how a movement should feel. “Squoosh your right ribs together like an accordian, and stretch your left ribs up. Then, holding that, shoulders move straight out, to the right. As they start to go up, pull your right ribs up, up, up, and then squoosh your left ribs together.” This is the “sidewinder,” a fabulous torso figure 8. She has you do this for several minutes at a time, thoroughly drilling it in. She is really funny and warm, and walks around the room stroking backs that are too tense, and pointing into spines that are too curved.

We had only one 20 minute lunch break, and some yoga stretching before and after. The rest of the time we were doing Mayas (reverse verticle hip 8s), Omis (interior hip circles), hip locks on the up and on down, chest slides and chest circles, shoulder rolls, arms (a disaster) and glute squeezes. The glute squeezes were so funny looking (it is just what it sounds like: you squeeze one side of your tush by contracting only that muscle, and then the other side) that Rachel played merry-go-round music to the exercise, to let us know that it was silly and not to worry if we couldn’t get it exactly right.

My hair was dripping wet when we were through. I drank two bottles of water and ate two little candy bars when I got home. The good news is, my hips hurt less now than they did this morning! That’s because we did so many good stretches and because Rachel showed us every single move generating from obliques and low abdominals, rather than from hips. So now my hips don’t have to lie, cry, pop, or die.

And tonight, the Bellydance Superstars are doing a show, and we are going! Rachel Brice, Sonia, Petite Jemillah — all my favorites. I am totally psyched. And at least Ned will be happy to see Petite and her adorable little pout. Lets us forget the lack of vember outside.

Separate But Equal

Our town has finally gotten its act together regarding special needs kids and fun. Our Parks and Rec Department is huge, their budget is as well, (I say this as a former jealous School Board member. Not that our budget was small! But because our town splits school and town pretty much down the middle, which is largely a good thing because it guarantees a good budget to the schools, the problem is that the School Board does not like to ask for more when they need it, unless they really, really have to, so they often do without if they can. And so, nice programs get cut. Then I look at all that Parks and Rec has and does and I would get jealous. It’s probably an irrational reaction. I actually believe our town is well-run, as towns go. They just need a little more of a clue when it comes to special needs children.) and they have an entire booklet of activities offered to people of all ages. But for years the special needs parents I hang around with have been feeling overlooked. Most of us just cannot access the typical programs, even if they say they accommodate. They don’t have the right mentality when it comes to our kids. They see our kids as a burden or worse. So we often feel we need to be separate but equal. We believe in inclusion when you can do it, but sometimes inclusion should simply mean, “included in the offerings within the town.” And when you look around at towns nearby, similar to ours, like Newton and Belmont, you see that there are a wealth of interesting recreational programs offered to special needs people.

Things changed for my town a few years ago Parks and Rec hooked up with Special Olympics, and if you know me at all, you know how much I love that organization. SO teaches any kid a sport. They figure out how. They get terrific volunteers, excellent coaches, plenty of staff, and the staff listen to the parents, which is truly the way for children to learn — education must be a partnership with the families.

Now we have a swim team that practices at the town pool, The Brookline Sharks, as well as a soccer team, a track team, and more.

Last night began a new initiative on the part of Parks and Rec: Trips Unlimited, with Drew Bilillies. Drew is one of these Can-Do people, on steroids. (Not really) He operates out of the western suburbs (the Route 128 tony towns) and takes special needs kids, with aides, to all kinds of fun places and restaurants. We met Drew eight years ago when Nat attended a school program out there, and it was through Trips Unlimited that Nat filled his school vacation weeks.

Nat’s friend — with whom he went to the Extreme Sports Camp this summer — shared an additional aide with Nat last night on their first outing. They went to the Good Times Cafe in a van with other kids they knew (some of whom they’ve known all their lives!) and they had a blast, as far as I can tell.

It was a very strange and wonderful sensation, being at home last night (after my two speaking events, which were both excellent gatherings) with just Ned and Ben. I felt both young and old, playing around with Ben while Ned read to him on his bed, waiting for Max and Nat to come home!

Max came home first, around 10, just brimming with things to say. It is National Novel Writing month, and he and his friends are all trying to write 50,000 word novels in one month. He asked if our third floor was habitable so that they could all write there sometime! I was so happy that he wanted to bring them here! It means I have to buy some fuel oil to heat it, but it’s well worth it. I haven’t even met some of them, although Ned has. I’m also glad he is interested in writing. He is great at it, and, well, I feel a sense of pride in that fact.

Then Nat came home, and he had not much to say. He said he had a good time, and then got ready for bed. I was already in my jammies, and I was so tired — from waiting up for my two teenage sons!

Friday, November 2, 2007


Thanks again to Don, for sending me this on a morning where I am (was) crabby and stressed out about speaking at a Harvard conference! Now I is smiling. Put yer sound on and youze will laffs 2. Teh awesomz.

(Oh God please take away my cat allergy I want a cat so badly! And I ain’t gonna pay thousands for a non-allergic freakazoid kitteh. I wants teh real thing, adopted from a shelter.)

Thursday, November 1, 2007

Dream Me

Tonight I tried something new: bellydancing to ballet music. I put on my all-time favorite: Tchaikovsky’s Swan Lake, opus 20 Suite 4, I think it is. It is a violin solo, minor key, starts with a very stringy harp. Incredible. If you never listen to anything I’ve recommended, this is the time to start. You will have sweet dreams if you do. You will feel like dancing.

I danced with my magenta veil using belly dance moves to this very Russian music. The thing is, even the most Western European of Russian art forms have a touch of the Tatar, the East, from when the Mongols invaded and ruled for about 200 years. Professor Riasanovsky, my master’s thesis advisor at Penn, insisted that the Mongols had zero effect on Russian culture. But I beg to differ with that beloved curmudgeon. Look at the onion domes, listen to the Arabic lilt in that Swan Lake piece. It’s all there.

I can barely express what I felt as I put on that lovely, sad music, which I listened to as a child while dancing with my ballerina doll, Dancerina. She was a big doll, like a baby but with a pink and purple tutu, real pink satin slippers, glossy blond hair, and a crown on the top of her head. When you pushed down on the crown, she could spin en pointe. I would put my mom’s record, an old Eugene Ormandy Philly Orchestra rendition of Swan Lake on Dad’s old phonograph, (it was a big rectangular brown thing that stood on spindly legs) and spin with her on tiptoe in our basement playroom. Even though she was a baby doll, she was lovely. I longed to be that beautiful a dancer, but all my life I have felt like I was plump and clumsy.

And then, as I got older, I would occasionally dream that I was a ballerina. I would see myself on the stage, a slim and graceful version of myself. I would wake up feeling so excited to be her, and then realize in bitter disappointment that I was not.

But tonight when I got my idea to dance to Tchaikovsky, I could barely wait for the CD to settle into the player. I skipped ahead with the remote until I heard that thunk and twinkle of the harp. I had no plan, just to use the veil and to move fast when the music was fast, on little choo-choo tip-toe when there were tiny notes from the strings, and to spin when the violin goes around and around in circles.

For each move I emphasized my technique. I stretched out as tall as I could be, toes pointed, arms curved, form as perfect as I could make it. I imagined black velvet sky, swirling snow on a frozen silvery lake, and white swan-like dancers moving across it. My eyes were trained on high points in the room; the tall red roses Ned got me for my birthday, or the high arched moldings, so my focus was sharp and my head turned just right and I did not get dizzy.

At one point I caught a glimpse of myself doing the turns that Katia, my most recent teacher, had taught me, wearing black ballet flats that feel like lotion on my feet, my hair done up tight in a knot in the back, my neck long and straight from all this practice, my muscles pumping smoothly, holding me steady. While I danced, for that one song, my heart surged with happiness. In certain angles and perhaps because of soft nighttime light, I could have sworn that I saw the dream me in that mirror. I felt like her, at any rate.

Water for Chocolate

Towards the end of Halloween, there were a few nice surprises. Yes, I went to the Middle East and had a great time. Cambridge was decked out like — well, Cambridge. I fit right in with my little green veil and Medieval top and choker.

But Trick-or-Treat was also sweet. At one point, I opened the door for a couple of little witches and one of them turned out to be a Baby Belly of mine! I was as delighted as she was when I recognized her.

And then I got a call from Ned, telling me they were approaching the house. What we usually do is start about half a mile down the hill, towards the school, where more of our friends live. Then we cover all of Walnut Street, which is jam-packed with participating houses (so many beautiful Victorians, all done up in the finest black-and-orange plastic money can buy). Ned said, “Get water.”

I remembered that we always get really thirsty walking around, screaming and yelling and laughing. Yet, in all these years I never remember to bring water. Flashlight, yes. Cellphone, yes. Costume to embarrass my kids with, yes. But water?

A few minutes later I heard what sounded like an army of Cossacks (God forbid) descending on my house. I peered through the door, and saw a Fly Guy, (my Fly Guy), a football player, a gigantic leaf, and a bunch of other things I didn’t recognize — but I sure knew the kiddos. And I handed out around seven water bottles. You’d think I was the Halloween Messiah or The Great Pumpkin or something. Forget full-size Charleston Chews or little pumpkin boingy toys: bottled water has them all beat at the end of Trick-or Treat.

(Me and my pals at the Middle East, later on.)

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