Susan's Blog

Thursday, April 30, 2009

Looking to the Sky For Answers

I don’t blog as much as I did since Nat’s moved out. Half of that is because I have gotten used to his not being here, and so my mind runs on different tracks. But then the other half is that when my mind collides with thoughts of him, it grows cloudy and unsettled, like the sky before an August thunderstorm. Winds of doubt blow around, causing my pain to rustle and drop to the ground. It all just lies there, unresolvable. I can tell you, I tell everyone, that this was the right thing to do, that he’s doing great, that he transitioned amazingly well, didn’t look back.

I just worry about what I don’t know, what I imagine. If he misses me, what then is his thought process? Does he think, “I want Mommy,” but then, where does it go? How does he explain this to himself? Did the missing-me subside into a gentle but persistent ache?

I just don’t know how well he understands things, and he can be so passive. Most of the time he is passive and gentle. He has “outbursts” when things go impossibly wrong for him, but so do we all. I just know how to modulate mine better, and I know to fake things so that others don’t worry or get alarmed.

I saw an article in People Mag today, about Sky Walker, who faces murder charges. And all his killed mother ever said about him was how he was her life, her heart. Sky had an outburst that just escalated. I have seen Nat like that. I have felt things that strongly myself, where once I lost control, there was nothing else to lose, so I would just keep spiraling downward. I know that Nat has felt like that. I have seen him cover his face after an outburst. What else could that be, other than shame?

Why is it that I can believe he experiences and understands emotions like shame and remorse, but that I can’t believe that he understands why he has moved out?

I don’t write about this too much because it’s so big and amorphous and irresolvable.

Tuesday, April 28, 2009

I Hate

Autism hysteria
Myself in capri pants
Flip flops with a dress
Being used to Nat not being here
Trying on 12 things and not buying one
That I’m not supposed to tan
Not hearing back from editors
Hearing no from editors
Not fitting in
Spare flower beds

Friday, April 24, 2009

The Way the Cookie Humbles

Today was a day for perseverance. Which pronunciation do I mean? What is the difference? One is admired, one is reviled. I like to think that in terms of my writing, I perseverate productively, and then I persevere.

So I’m happy today for many reasons. God is in his heaven — which is right here on earth — and all is therefore right with the world. I just finished writing a killer oped, which I’ve sent to the Times. All of my fingers and toes are crossed. This piece asks — a propos to the upcoming NASDAQ event on April 27th (two Autism Speaks board members will ring the bell to close the day) — are autism families better off? Is this autism awareness, or anti-autism mania?

I managed to squeeze in a 10-mile bike ride with Max! This was the best thing that happened all day. I am sunburned and pumped. I finished drying my hair just as Nat’s van pulled up, and he spilled out of it in a flourish of self-talking and Joyful House Stompies. We took Ben to his appointment and we walked to the evil Starbucks, which actually was not evil at all. They have seen the light! The same guy greeted us: “Hi guys!” and helped Nat figure out which cookie he wanted. I gave him a dollar tip, I was so happy.

And then we sat outside! In the hot sun. I worked on my essay while Nat ate and self-shouted. Everyone around us noticed Nat and his joy. Some people tried to give us a little more space. I hope they realized what unique sweetness was in their midst — and I don’t mean the cookie.

Thursday, April 23, 2009

They May Think It’s a Movement

Activism and energy are pumping through my blood lately. I suppose it is because finishing my second book (a few weeks ago) and my second semester of teaching (as of today!) has opened up a space in my life, and most of my readers know how much I hate open space in my life/free time.

Anyway, yesterday I posted about wanting to put together an autism summit, and I still want to do that. I took down the post, however, because I am not ready to start dealing with comments and questions and all of the wonderful stuff that will come of this concept. So — as Bill Murray said in Caddyshack, when the Dalai Lama had granted him Total Consciousness on his deathbed — “I got dat goin’ for me.”

I walked out of my classroom, not wanting to feel the feelings that were coming up (sad that the school year was over, insecure that I am still not experienced enough a teacher) and straight up the steps of the Massachusetts State House. I figured I’d drop in on my State Representative, whom I’d called last week for an appointment. I told the front desk that I had not yet heard back, and so, here I was in person. I had had some very good advice the other day from one of the administrators in Nat’s school. This administrator is very accustomed to dealing with the state for adult services. He was adamant that parents need to know their State Reps, and be sure that the State Rep knows them. “You want to be on a first-name basis with your Rep,” he said. “When something comes up for your child, you want them to know who you are.”

So my State Rep, who already knew me from when I served on my town’s School Board, is now going to know all about Nat, and people struggling with the need for supports as adults. Budget crunch time is upon the Legislature right now, and so I had to meet with an aide instead. But I sat down with him and told him about Nat’s achievements (school and jobs) and Nat’s future needs (supported housing and employment) and how he must be allowed to continue to be a part of this world, contributing to society in whatever way he can. I’m going to send him my book and put him on my Christmas card list. As well as my Department of Mental Retardation person.

If I didn’t live so close to downtown Boston, that would not stop me. Here’s what I would do:
1) Google the House of Representatives in my State and find out which Rep was mine.
2) Get his/her phone number and email address.
3) Leave a message for a phone appointment
4) Send an email that says something like this: Who I am, my address, who is my child, his age, his diagnosis, his abilities, his achievements, and his needs for the future. I would thank the Rep for any support of autistics and their families he/she has given in the past and ask him to continue that good work.
5) I would tell him that if he needs support in the form of letters and phone calls on issues related to adult services for autistics, I could get my friends to do that, too. This not only offers help, but it lets him know that the autism community is very active.

Just imagine if we all did that. If you and your friend with the kid on the spectrum. If you, and an adult on the spectrum joined them. If then you found another, that new lonely mom whose second kid was just diagnosed. Get her to bring her kids with you. Those parents of kids in your kid’s class who nod knowingly at the stuff you tell them. Carpool over. And then..

...And can you, can you imagine fifty people a day,I said
fifty people a day walking in singin a bar of
"Give Our Kids Better Adult Services" and
walking out.

And friends, they may think it's a movement.

Tuesday, April 21, 2009

Beyond Compare

Don’t know just what I wanted, but I know, I wanted more.
–Carly Simon

In Dr. Suess’s story Yertle the Turtle, the main character Yertle just keeps getting turtles to pile up on top of one another so that he can be the highest and the best all around. Turtle after turtle is crushingly laid on top of one another so that Yertle can reach to the sky, but still he is not satisfied.

Perhaps these thoughts are coming up now that I can see with aching clarity just how different Max’s trajectory is from Nat’s. Comparing children. Comparing scenarios. Someone wins and someone loses. There is a painful dynamic that occurs sometimes when I’m talking to very young mothers, whereby I am assuring them that their little child is fine or appears only mildly on the spectrum, or will be fine, or something like that. I was trying to explain this to my mother yesterday while we were driving back from her gym (I had driven down to Connecticut with Max and Hannah to begin our college visits. Can you imagine this is happening to a child of mine?? Do you know what I mean?).

Even Mom, who really can grasp every new concept I introduce, within just a beginning word or two, could not quite see what I meant at first. Of course she knew what I meant, but she did not think that I was interpreting the dynamic correctly. She thought that most people were saying, in admiration, that I did a lot for Nat given the paucity of resources 19 or 16 years ago. Or given the lack of support. She was probably right, but that is not what I was talking about.

What I’m talking about is a text that runs beneath that, which carries the implication that you would never, of course, want your child to be like Nat.

They don’t mean to imply that, at least not consciously. But they are hoping for a different kind of child, a different outlook, a different set of challenges, than what someone like Nat presents.
There is nothing wrong with that! I know that! Autism is difficult, painful to deal with, sometimes impossible. We hate to see our children struggle! We hate to struggle. Yes, yes, yes.

But what happens is, I end up feeling like Nat is being seen as somehow inferior because basically he is the feared outcome. It seems almost taken for granted that Nat is the undesirable.

In the same breath, people comment on how “great Nat is doing! since last time!” and “how wonderful he is!” and I wonder which is the greater truth: that Nat is someone to admire or that Nat is someone to fear?

I am not naive. I understand that the two exist together at once. They do for me, as well. My heart will still sometimes hurt when I look at Nat and see the life he does not get to have — especially now that Max is considering which colleges he wants to attend. I cannot help comparing, just like the young mothers. Maybe it hurts when they talk to me about this because they are showing me something that is still true inside of me, that exists right alongside of all my love and pride about Nat. For as great as Nat’s life is, as hopeful as I am about his future, sometimes, I still want more.

Thursday, April 16, 2009

The Horse and His Boy

I am a Narnia addict, ever since I plowed through the books as a nine-year-old, while my parents set up our campsite on the Green River in Utah. Sometimes I was so mesmerized by the books that I could not look up, from the backseat of my parents’ paneled Ford stationwagon, even though we were visiting wonders of the world like the Grand Tetons or the Grand Canyon.

I particularly loved The Horse and His Boy, the fifth book of the series (or the third, depending on how you look at The Lion,the Witch and the Wardrobe: first or second? It had a particularly sweet quality to it, with the two main characters, Bree (the horse), and Shasta (the boy). The animals were more prominent characters than the humans, and Lewis draws them deftly and with his usual wit and innocence.

We all love to escape to our “own worlds.” So why is it so terrible that many autistics do that too, and even better than us? Or perhaps, those of us who must escape (the way I do, into bellydance costumes and music, or novels or endorphin-release or…) bear the kiss of autism, too?

Escape is very appealing to me. So when a friend of mine mentioned this book to me yesterday, I decided I am going to buy it today. I will try to review it formally, but for now, what struck me was how the father just went off with his autistic son to Mongolia because horses were an interest of the boy’s. The trip was not about fixing his son’s autism, but rather, engaging his son in something he loved. I haven’t seen the book yet, but my friend (my agent, actually, who is always on the lookout for autism books I should read) said, “This is what you believe, too! That all parents should find their own happiness — and their kids’ — and follow that as much as possible. It might mean finding your Outer Mongolia halfway across the world or your Inner Narnia in the backseat of your parents’ car.

Sunday, April 12, 2009

I don’t know how you do it
Or maybe she said did it
As we thought about our sons
Hers just sprouting
Walking about and
The baby dissolving,
The dream clouds
thunder inside gathering

I knew how I did it
At that moment; I knew it all
Not talking, not looking
yes walking, strange-booking
I, mother knowing,
November leaves
my heart walls thinning

How do I do it?
I can’t do it now.
Yesterday’s present,
Today’s return
Even in my sleep
Bones scrape, muscles burn
Not for the man
But for those days of clouds
Though the son was rising.

Ground crumbling

Saturday, April 11, 2009

My Passover, 2009

Tabblo: My Passover Seder 2009

Monday, April 6, 2009

Oh, Baby

I’m glad that I made the decision to teach Baby Bellydance one more session this year. Just the second graders, not the kindergartners. The last class of the previous session convinced me. I had each of them perform — we called it “Nightclub” — and I was really impressed by their talent. One of them is actually good enough almost to do Open Mic night at the Middle East Club in Cambridge. Were it appropriate. I’m not kidding. She smiled and made eye contact the whole time; she added these little kicks and head flips — I don’t know where she got all that, I don’t think I am even that expressive when I dance.

Then when all the parents came upstairs to get the girls, one of the students said, “Let’s all hold hands and dance in a circle!” Imagine being so innocent and happy that you want to just hold hands and dance in a circle. And so we did. I think it was that moment when I decided I had just to do it again next session. I can’t believe how wonderful those girls are. I know I am their teacher, but I also kind of love them like daughters.

Today at pick-up I ran into one of my friends, who has three little daughters. The two older girls (second grade and kindergarten) have taken my classes often. The middle one is a kindergartner and she is so adorable: dusky skin, long brown hair, mischievous eyes. She looks the way I imagine a girl of mine would look. The little trumbanik climbed up onto the bench and reached up to me, utterly confident in her assumption that I would pick her up. So I did. What a feeling, to hold an enthusiastic little child against me again. The weight, the warmth, the closeness of the sweet face. Then the baby, she’s a preschooler, barely more than a toddler, demanded her turn in my arms, so I put down the one and picked up the other; light and easy, used to being held. On my hip as if it were only yesterday that Ben, or Max, or Nat were there.

I told Ned sometimes I can hardly bear it to be done with having children. I’m not too old, I say. It is his decision for the most part, not mine. This is one area where we sharply disagree. But — I also know that I have grown a whole new life since my children have become such separate individuals. And they just shine on their own, and I stand and watch, captivated, but untethered, like a boat floating in the bright comforting beam of the lighthouse.

Saturday, April 4, 2009

Penny and Pound-Pinching Keys to the Universe

This might make me see like a dork (and who says I’m not?) but sometimes I just feel very full of the little things in life that make me happy. I call them “Keys to the Universe. I list new ones every few months. The following are my current no-fail, dependable things in my life that always do what I hope they’ll do, and they either are not expensive or not fattening. They are not my favorite things; that is a different blog post. No, they are my best-performing things, good ideas, satisfying products.

1) Flowers from Stop & Shop. They cost just a few dollars but they last two weeks and they are gorgeous!!
2) Changing my part to make my highlights last a little longer.
3) Manicure from BeBe Spa in Washington Square in a pale color: really lasts a week.
4) Sunkist Diet Orange soda. Tastes like you’re drinking a lollipop, no calories or carbs
5) Reese’s sugar free peanut butter cups. Just like the real thing but for 5 you only get 2 carbs. Just watch out for the “laxative effect.”
6) Extra cheese nachos from the Coolidge Corner Clubhouse. I eat the cheese, Max eats the chips. The cheese comes right off, chip (and carb)-free. If you eat no carbs, you can (probably) eat cheese daily. Check with your doctor.
7) Cocoa hull mulch. Though it costs more than the orange pine bark, it lasts far into the next season and is actually good for your soil. Smells like chocolate when first laid down, much classier — richer, darker brown — than the other mulches.
8) Raking out my own gardens and seeing what is coming up. No stupid leaf-blower noise, no money paid to lawn guys, makes you lean and muscular, and you get to see your baby planties. You blast your Arabic tunes and your Allman Brothers on your iPod shuffle, and you’re set. You sing along and your neighbors may think you’re crazy, and again, who said I’m not? At least I’m happy.
9) Stitching up holes in jeans and reinforcing the stitching with duct tape on the inside (learned this from Max, who uses duct tape on the outside of his jeans as well. Sigh).
10) Cleaning out my closets, one at a time. Doesn’t save money or burn off fat but it is so great when the junk is gone.

Valourous Bertinelli

My dancing last night spurred all kinds of thoughts, mostly about older women and their bodies. Older women being sexy. It is like a taboo or something. It is a joke. But I don’t think it’s funny at all.

Bellydancing taught me this. How could you not like bellydancing? Is there any other beautiful dance form that features bellies, rather than abs? Or that has websites like this? It is a given in bellydance that some of the dancers are meatier. It is not unusal, also, to see dancers well into their 50’s. Yes, yes, yes. Once you get used to the person in front of you and accept how different this is from what you see in everyday media, you realize that this is great: pretty, sexy, enviably lithe and athletic. You can move the way you want to, the crazy free way you did as a kid!

When I tell people I bellydance, I find it interesting that the way they internalize it and almost in a way they forgive me for doing it, by acknowledging how, “It’s such a great workout, especially for your abs!” As if that is what makes it legitimate. Let me tell you: I don’t do it for the workout. I do it for how it makes me feel like a Goddess.

But what is my explanation? Someone once said to me, “It is a celebration of the sensuality of the female body.” And I think that’s the truth. With Valerie Bertinelli in the news so much, for being 48 and beautifully wearing a bikini, it is difficult to figure out what is a celebration of the female body and what is desperation.

I do not mean that Valerie Bertinelli is desperate, that is not it at all. I think she must be so proud of herself for losing 50 pounds; I would be, too, if I needed to lose that much. Six years ago I lost 22 pounds and have more or less kept it off — give or take 10 pounds — and I am really psyched about that. But as Ned pointed out, “she’s only in the news because of her weight! Is she doing any new acting or anything?” And I guess that’s the thing that might bug me. It’s all about her newly-skinny body and not about anything else about her. It’s as if she had no value before she was skinny. The magazines make it that way, not Ms. Bertinelli. Except when she remarks on how fearful she is of exposing her “jiggly bits” that are still there even after the big weight loss.

The jiggly bits are female! That is what bellydancers know. Bellydancers emphasize jiggly bits while also controlling them at the same time. A shimmy is basically letting your ass shake, but doing it in such a way that everything else is still — to emphasize only what you choose to emphasize. Bellydance is a lot of “you may look at me, ” and then “Now you may not.” Coquettish and playful, under the control of the dancer. It feels wonderful. It is not everything in life. It is not the only way to feel wonderful. But it is one good way. When you can master that attitude, it feels amazing.

I’m sure Valerie B feels some of this, but the media won’t let her express it. I’ll bet she has renewed energy and is perhaps in a stage of her life where she is thinking of trying all kinds of new things. It’s great when weight loss is a symptom of a greater evolution of the spirit, a shift in your own self-image and potential. My weight losses, for example, seem to coincide with finishing projects, with huge bursts of creativity. And springtime.

The problem, of course, is that this seems to be all we will hear of Valerie B. I hope not. I’d love to see her featured in a movie now, where she has a great relationship with someone, and it is not on Lifetime.

I want Warner Brothers. I want Cinemax. I want bellydancers to be taken seriously, and not to have to look like Bellydancer Barbie. I want to see 60-year-olds in bikinis, like Helen Mirren — wow. Or 70-year-olds with beautiful smiles and Elizabeth Taylor eyes — like my mother. Well, I am doing my little bit in furthering this, being a 46-year-old mother-of-three bellydancer.

One day at a time.

Friday, April 3, 2009


Friday night
Alright, alright
All my boys within my sight
Two are tall and one is slight
But God, I think, did something right.


I used to love the Washington Square Brookline Starbucks. I did not care that they were a chain. This one was one of my favorite coffee places; probably my second favorite. Peet’s in Coolidge Corner is my absolute first, hands down. They are real, even if they are a little fake, because there are fewer Peet’s so you don’t get jaded by them. Second of all, they have better coffee. And third of all and most important, they have nice baristas.

But they are too far away from where I go on Friday afternoons. So I went to this one and we could always find a little table, and the barista was a lovely young man, and there were regulars I recognized, and it was my own little Cheers minus the annoying Cliff and Norm and Carla. This is the Starbucks that has the menacing turkey living nearby, but even that did not stop us from gobbling up their food and coffee.

Every Friday, Nat and I would go to this Starbucks while Ben had a regular appointment up the street. He would go in and he would look in the pastry case and decide what he wanted to eat. And then he would tell the barista. “Chalk-Chih Cookie, PLEASE!” The former barista was so great, he understood, and he would be courteous; he clearly appreciated Nat’s business. I always tipped a dollar for a $3 snack. Who cares? Kindness is priceless.

The new barista is an expressionless meanie. He doesn’t say thank you, he hardly waits for Nat to finish ordering, he put the water on the counter without a lid and just basically acted like we were bothering him.

Wash. Sq. Starbux (or Washed Up Starsucks, as they shall hereafter be known), closed for a week: bad already. I had to go somewhere else with Nat. Very, very bad. But he was wonderful about it. Plus that week I was with Aunt La (my sister Laura) and cousin Kimmie, some of his faves.

So Washed Up Starsucks reopened to some fanfare and we went in. Beautiful sea-green sparkly pearly tiny classy tiles all along the back filled my eyes, and I was happy. But then, oh then. I noticed that about half the tables and chairs were gone! Gone! In a Starbucks! Where there are never enough seats anyway! Oh, there are plenty of people with laptops and coffee cups that have been empty for hours, while two loyal customers loaded with treats had to stand there, while one of us kept saying in rising autistic panic, “Sit in chair sit in chair.” Then I, in rising neurotic-Susan panic, started to say loudly, “I know Natty, they changed it! There are no seats for us!”

And then there appeared two chairs against the far wall, near the bathrooms (we never sit there but now we were so glad to), without even a table.

Now, I said I was neurotic. Well I heard laughing in the backroom where the baristas hang out or cook or wash up. And I just had this feeling that this new mean one was laughing at us. Of course I have no evidence. But I just had this feeling and I could no longer even sit there. I was glaring at them, daring them to laugh my way. Oh, just give me the opportunity, New Barista Man… Even without the opportunity, I rose from my chair, shaking, and I was ready and willing to say, “I am NOT coming back here! You are mean.” (Not very inspiring, but very much to the point.)

But, Nat was ready to go, and he just strode over to the door, throwing his trash away like the good citizen he is, and we left. I was fuming so much Nat was looking at me with concern. I yelled at cars who would not let us cross even though it was raining. I slammed myself down in my chair and closed my eyes.

I came home and I poured myself a glass of wine, and said to Max, “I am going to blog that fucking place.”

So now I feel better. But where will we go next week?

Wednesday, April 1, 2009

One Team, Unified, Indivisible

I wrote a column for this week’s Brookline Tab, about the Unified Sports concept in Special Olympics. Unified Sports is a way to make the playing field more inclusive for all. Typically-developing players play right alongside special athletes. Special athletes are the only ones allowed to score, however. It is a perfect situation for all involved to strengthen different skills, whether they be trying to get a basket under pressure, or good sportsmanship and helping your fellow man.

There is no reason why every town shouldn’t have Unified teams. There is so little cost to anyone, provided there are volunteers to help assist and coach, and school systems willing to donate the space for competitions.

I might sound like a poster child for Special Olympics, but that’s because Nat has enjoyed himself there, and has grown so much because of SO. I think that SO has done more for Nat than any therapy he’s had. Sure, I think his teachers have brought him a long way. But there is so much to be said about fun as a way to grow and learn. I truly believe that not enough of our autistic kids have fun. So many of us are just too busy trying to “improve” them that we forget that they need time just to play.

And of course the play leads to other development. I think Nat now understands about paying attention to what others say to him because he had to learn that to be on a basketball team. When people called his name, it was because they were about to throw a ball at him. And now, when people call his name, he looks up and listens. He may not overtly respond, but I think he processes.

The other day, he even held open the door for me and waited for me to get there. Where did he learn that? What a guy.