Susan's Blog

Friday, November 30, 2007

Autism All Around

Maurice Sendak and Carol King need to update.

A … Autism All Around
B … Bolting Outside
C … Can’t Tell If He’s Cold
D … Dragging to Doctors
E … Enervating Educators
F … Forever Flapping
G … Getting Giggles
H … Having Heartache
I … Irritating IEPs
J … Juggling Therapies
K … Kissing Strangers
L … Looking at Lines
M … Memorizing Everything
N … Never Napping
O … Ordering (Gluten-free) Oatmeal
P … Pinching People
Q … Quite Quiet
R … Running Away
S … Sweetly Unspoiled
T … Throwing Tantrums
U … Unusually Upside Down
V … Very Bright
W… Wears No Labels
X … X’ing X’s
Y … Yackety-yacking
Z … Zippity Zound… Autism All Around

Autism: The Musical

Sounds crazy, no?
–Tevye, “A Fiddler on the Roof”

Bad title, great movie. It sounds like it’s going to be a musical where the characters are signing about aspects of autism. It is not.

Autism: The Musical is a documentary about a theater troupe of ASD kids, “The Miracle Project,” run by Elaine, a single mom of 12-year-old Neal. There are five main characters, actors in the troupe, who are the focus of the film: Neal, Adam, Wyatt, Henry, and Lexi. We learn their stories from mostly their moms, but also their dads, in between scenes of rehearsals. We watch the process of bringing a bunch of very different ASD kids together, all different levels of ability, and see them learn not only how to be in a play, but also to listen to one another, communicate effectively, and connect with others.

The overall feel of the movie is naked honesty and riveting storytelling. Your emotions churn from sad to shocked to moved to laughing as you watch it, taking in poignant early childhood footage and then the story of a marriage breaking up, then an insensitive and expensive school advocate, or a few minutes of one child describing what it’s like to be stuck in “the retard class,” but bullied by the “regular kids.” Even the lighting is raw and natural, no one has on any stage make-up, houses are sometimes messy, but more than that, their words are unvarnished, and the conflicts both among couples and between staff and parents and among kids are unflinchingly recorded and presented to us as all part of the story.

The best thing about Autism: the Musical is the way you get to know each of the kids as a person. This, to me, is the kind of work that will change the world because it will get people beyond stereotype and dismissal, to seeing real people with a full range of talents, problems, concerns, annoyances, and delights. Where first you see perhaps an “overweight” adolescent, you come to love Lexi for her beautiful, ready smile and her Joni Mitchell singing voice, honed by echolalia and the love of imitating. You want to listen to Henry all day as he talks about his obsession, reptiles, but gradually begins to relate more to the people around him. Neal is non-verbal, apparently out of it, but then you see how he’s mischievous and funny with gestures, keyboarding, and looks he gives. Wyatt breaks your heart talking about bullies, but then he gets to act the part of a bully and it completely thrills him. Adam is the buck-toothed, cherished son of an intense, argumentative mom and in the end you are rooting for them both.

Even my much more even-keeled friend was crying and laughing all the way through. I somehow left feeling proud of myself, and proud of Nat, imagining him in the Miracle Project. I knew there would be a place for him there. He would fit right in. All of our kids, all of us would, because they were determined to welcome and work with everybody, no matter what their challenges, and find their talents. As far as I know, no one had special training of any sort, no baggage about autism, nothing but an eagerness to do this. There was only the ingredients necessary for success: enough bright and caring staff; parental input; adequate space and time; reasonable but respectable goals; an eye out for fun and pleasure. And that, my friends, is what a true learning experience is all about. That is what human interaction should be about.

As my Grandma would have said, “A beautiful picture.”

Thursday, November 29, 2007

Early Morning Bruce Juice

Almost time to flush November. December is better, it even sounds like the word “Decent.” Although, December is a funny time of year to be a Jew. You really feel like a minority. You get the sense of being an outsider. It’s like finding out about a big party you didn’t get invited to. You know you’ve got your own little, intimate party of menorahs, dreidls, chocolate coins, and songs in the minor key about lights that lasted eight days (hard to appreciate when our little colored candles last 45 minutes and our light bulbs last six months) but they all kind of pale next to the onslaught of red velvet, deep green, fake snow, lights, shiny presents, and music in the malls. Yeah, we’ve got Adam Sandler, but they’ve got Bruce Springsteen.

But more and more, I only feel psyched for this holiday. I have a place to go for Christmas dinner: Ned’s father and stepmom’s house in New Hampshire. I know exactly how it will be, what we will eat, who I will see there, and I’m glad. I’m like Nat; give me a social story about how I’ll feel and when it will end, and I’ll be okay. We even get to dress up.

At Christmastime, I feel like, well, if we’ve got to lose our leaves, flowers, and warmth, at least we lose them to a tidal wave of color and shopping. We get a long vacation, we get a lot of happy, excited Christians — always a good thing for the majority to be happy when you are a minority — we get to revisit old classic television like “Rudolph” and “It’s a Wonderful Life,” “The Grinch,” and “Charlie Brown Christmas.”

I was all grumpy at the Stop and Shop the other day — even though they’ve renovated it, it’s still an armpit of a supermarket, always out of things I need, plus I hate food shopping because there is always so much to get and so much to carry inside. I hate walking in through my basement, pass the termite-eaten wood, thinking of all the renovating we are never going to get to, thinking of how the stairs up to the kitchen always look worn out and dirty, even when freshly vacuumed, thinking about all this food I just bought but I have no idea what to make for dinner. I was hearing the end of some real stinker of a Christmas song — probably some goopy thing from the ’50’s, the one about the Winter Wonderland and Parson Brown, for crying out loud — when suddenly I heard those familiar little piano-key Jingle Bells along with a very deep voice saying, “ho ho ho,” and I had a hot flash of joy realizing that Bruce’s “Santa Claus is Comin’ To Town” was beginning. Now that is one classy, classic Christmas song. It makes me so happy to hear Bruce get all wound up and giddy, laughing and out of breath from Clarence’s clowning. It is the best Christmas song there is.

I don’t know where this is going, I’m just glad November has.
And now, for your listening pleasure, a blast from my past.

Wednesday, November 28, 2007

Fairy Godmother

Now I’m back to thinking about setting up a foundation/writing a guide. What would be the most helpful, what is the most needed? Here is my list:

1) A resource that gives parents a few clear paths to follow, at every stage of development, for their atypically developing child (without being arrogant-pricklike). Diagnosis, school planning, IEP negotiating, middle school planning, resources for having fun, transition, vocational, independence-training, adulthood. A guide that gives parents a meaningful structure to explain to them the stage they are entering, a platform to cling to.

2) A foundation that awards grants to families who need help with some aspect of family life. Grants to aid families in Siege Mode (when they are in crisis related to autism), grants to aid independence, grants for therapy for family members.

3) A foundation that awards grants to families trying to have fun, in the midst of crisis. Doesn’t have to be autism-related.

4) A workshop/center that offers fun to disabled kids, that is not billed as “therapeutic” or “pragmatic” or does the standard van-to-bowling-alley (not that there’s anything wrong with that). You see where this is leading? A place for kids to be kids, especially girls. My belief is that disabled girls are probably steered away from feminine fun, and that they sorely miss that stuff. Do they learn how to feel beautiful, do they ever feel empowered from within or without? That is what I could teach them, through bellydance and perhaps some personal shopping and make-up lessons. Makeovers! Ever since I saw Cinderella, my very first movie, and she transformed, bibitty-bobitty-boo, into a princess, I have been enthralled with the power of the makeover.

I could call it: Fairy Godmother Foundation: Because everyone deserves to go to the ball.

Tuesday, November 27, 2007


Sometimes it takes a lot of trips on the merry-go-round before you grab the brass ring. What’s more, sometimes brass rings are made, not found.

We had been through four pediatricians before finding Susan Reuter. I always liked her openness to my ideas and my discoveries about autism, and I have cherished the way she would admit when I was the expert, and she was not. She’s been our doctor now for 11 years. We kind of grew up together, a mother and a pediatrician learning as we went (she is only one year younger than me and even went to the same school as Ned and me). We had a true partnership in taking care of my kids’ health. And while sometimes deep down I have wished for that one professional who really knew it all, who could tell me what really to expect, who could tell me the best path, and what else I should, really, be doing, I know that such expertise does not actually exist and if someone tried to be that for me, I would probably think they were arrogant, know-it-all pricks.

I visited Susan today, to get the guardianship process started. (After Susan, we have to get a psychologist and a licensed social worker — not one of those imposter social workers that we run into day after day — to sign off on the report.)

Sitting there with her, I began pulling out the forms from my crisp little “Nat 688” folder, as if I were Ms. Together Mother Extraordinaire. Suddenly I started coughing and sputtering like Krakatoa. It felt like my throat was just closing right up, the fingers of God pressing in, and my freshly made-up eyes began watering like Niagara Falls. It was an anaphylactic-geographic nightmare.

Good old Dr. Reuter immediately grasped both the seriousness and the humor in the situation. She rushed outside and got me water, tissues, and even an inhaler. I said, “Yeah, I have one of those, but…”

And she finished my sentence, “It’s expired.”

Eyes a-flooding, chest heaving, I merely nodded. Then, as if that weren’t enough, I burst out in a sweat. “Got anything for hot flashes?”
“But you’re only 21!” She said. We laughed, but then I was coughing again.

* * *

“You know, this is real noxious stuff,” she said, looking at the forms, after I’d recovered a little.
“Yes, I’ve been a mess over it, ” I said, wiping my nose and filling my coat pocket with crumpled tissues.
“That you guys have to go through this, considering the awesome parents that you are!” she murmured. “I’ll take care of it; you have enough on your plate.”
“So — ” I said, wanting to cry, lie down on the rug and sleep, or else just hug her, “Can he keep seeing you even though he’s eighteen?”
“We even have someone who’s 28,” she said. “Some people, you can’t just go by age.” I liked the matter-of-fact way she said that. Nat was her patient and that was that.

Forget the brass ring; I felt like I’d struck gold.


My kingdom for a horse
–Richard the III, Shakespeare. (For a better accounting of Richard III, read Sharon Kaye Pennman’s The Sunne in Splendour, one of my all-time favorite books)

If you were startled awake by a loud, shouting cougher, it was probably me. My cough, which started as a little post-nasal-drip on Thanksgiving, has morphed into the stage of devlish-tickle-in-the-throat that makes you scream out your cough in an effort to excise/exorcise it from your gullet. Nyquil quenched the fire for most of the night, but took a good hour to really work and then wore off too early, so here I am. Upright and coffee-d up, I am now fine, so I will forget about this backhoe inside my neck until tonight.

Mo-in-lo coming tonight, just for dinner. Got to figure out what to cook (or dial, more likely. Ssh, don’t tell her.)

That’s all for now, no kinder awake yet. Today I must also go to the pediatrician and get her to write up the beginning of the clinical team report that sets in motion the guardianship process for Nat. I feel fine about it — right now — but stay tuned for the after shock.

More coffee, argh, the tickle is back, &%#!! Open the coughers! My kingdom, for I’m hoarse.

Monday, November 26, 2007

Meat-And-Potatoes Play

It seems to me that perhaps the thing that makes an interaction more enjoyable is if you join with the other person, in the moment, to whatever degree possible. This is something I learned, and keep on learning, with Nat. I remember us sitting in his little play tent in his room and I had no idea what to say or do next so I just started wiggling my mouth and being silly. “I’m Mrs. Sillymouth,” I said, channeling Adam Sandler; Nat imitated me, saying, “Mrs. SillyMouse.” So I became Mrs. SillyMouse. It wasn’t earth-shattering fun; it was just meat-and-potatoes play, but it was exactly what we felt like doing just then. I felt free; my breath came easily, my legs were “Indian style,” (that can’t be the best way to say it); my back was comfortably curved. Nat was close to me and he was smiling.

Today I only had two Baby Bellies in my class; the raw weather is starting to claim its victims. At first it was a little stark and quiet, just playing that Arabic music, which I think of as: “almost-out-of-tune-but-just-enough-melody-to-be-tantalizing.” Little J was watching me quietly with wide brown eyes and Little E was running around, bumping into the walls. The hour stretched before me, yawning and empty. I heard my thoughts start to churn nervously, as they have been the last few weeks in Baby Bellies, with those warped inner tapes of mine, “You don’t know how to teach, you don’t know how to engage them, what makes you think you can do this, you’re just a flakey hausfrau.” I felt my big fat heart start to fold up on itself, watching Little E rolling senselessly on the gym mats. “Gym mats!” I thought. “In a bellydance class! That doesn’t go! Make them stop and pay attention to you!” (My tapes go up to eleven.)

But not today. I just turned down the sound of self-destruction as much as I could, turned up Hakim, and forgot my Adult Self and started playing, right along with the little girls. The mats were blue, so they were water. I said, “Watch out, this is the alligator pit.” Little E lit up and started walking on the “ropes” that went across the pit. And Little J started being a mermaid in the water. Perfect. I took the sea-green veil and moved it through the air like water or fins. Before long, they were off the mat, and showing me a dance routine they made up on the spot. It had a few elements that I recognized: spinning with a veil, throwing your veil like a flower, and choo-choo steps. I couldn’t have been prouder.

I won’t say the hour flew by but I think we got in some good meat-and-potatoes dance moves, and some really great mermaid flips in between.

Sunday, November 25, 2007

SusanLilia’s Dance

I Never Met A Phor I Didn’t Like

I’m all out of faith
This is how I feel.

–Natalie Imbruglia

To all of you who think of my life as a roller coaster ride: welcome to Lightning Loops. (Or possibly, Free Fall, the ride that is so horrible they don’t even bother to disguise it as a giant spider or a Tower of Terror. It is just a metal structure with a chair that rises and rises until you hear this BUZZ and the chair is released and you fall downward.) I am feeling so brittle today, like I could break any second, just held together with scotch tape and coffee. The plastic sheen of the blue sky makes me squint and want to take refuge in yet another cup of highly sweetened Peet’s.

What started it? A shaky Thanksgiving. A disappointing long weekend. An uncertain future. The pervasive, snappish cold that tells me that it is absolutely true that winter is right around the corner, even though Indian summer was only last week. Why? Why do I feel this way? When all is fairly well within my combustible nuclear family? Taking the emotional temperature of the four of them, I find that they are all doing really well right now, so WTF is my problem?

Was it the New Yorker’s review of — of all things — War and Peace, the latest translation? Why, you might ask, would that send me into a tailspin? Because it makes me feel like a failure. It reminds me of my lost youth, of the path not taken, or in my case, the path barred to me by Penn and Harvard grad school admissions. You see, way back when, I thought I was going to get my PhD in Russian Intellectual History of the 19th Century, at either Penn (where I got my Master’s in the above) or Harvard, because we were destined for Boston after 5 long years in Philadelphia. But I was not accepted into either program; I probably was not serious enough a student. I did not read 18th century whaling diaries on my vacations at Cape Cod. I did not subscribe to any historical journals. I had not mastered statistics. I did not want to visit the Soviet Union, I told my advisor. I wanted to visit Russia. 19th Century. I wanted to wear those clothes, bustle and all. I wanted to ride in my coach and play Whist, whatever that was, dance at the Rostovs’ ball and decide between suitors. Seriously, all I really wanted to do was figure out why the Russian Enlightened thinkers thought the way they did. I wanted to immerse in it, go back in a time machine. Well, that was just too emotional for those hardheaded academics, so they turned me down. Anyway, so I just came to Boston figuring I’d do something else. And — voila! I did. Oh, boy, did I.

But I still wonder at what I have not done with my life. I read that terrific and interesting New Yorker review and I could not help reading various clever paragraphs to poor pre-coffee Ned. I felt such longing, to steep myself in that academic world of pondering Tolstoy’s every word and then doing the research to prove this or that completely irrelevant but beautiful point.

I am both blessed and cursed with having the time to do what I want with my life. I understand that this is a wonderful, lucky thing, but it certainly brings with it its own problems. I feel utterly compelled to find The Right Thing to do with myself and then Do It. I am longing for a book idea; at the same time I want to start a dance studio for disabled girls. At the same time, I have a partially-filled-out job application to Anthropologie; at the same time I am looking up grad school programs in special needs education but feeling like, Jeebus Cripes I should be teaching these classes, not taking them! My arrogance and impatience get in my way as much as my intertia and depression.

A lot of people have told me that I should give myself a break and realize that I have a hard life. They mean Nat, of course. Nat is an easy target, poor Sweet Guy. But they are so wrong. I know that Nat is not what makes my life its most difficult; I am. I trip over my own neuroses like tree roots in the path. Nat, in fact, has given me a little respite from all that, as well as a chance to strike out on a whole new path through the swamp. Pardon my metaphor, but I am really trying to figure shit out and I am currently feeling a bit lost in the woods.

Saturday, November 24, 2007

Knot a Good Thing

I have to admit, I sometimes enjoy being a hater. Looking at my squat, jagged broken nail in the midst of a handful of perfect Jordan Almond-yummy fingernails, I will now make my list of things I hate, otherwise known as “Knots in the Stomach of the Universe.”

1) One broken nail on an otherwise perfect hand
2) Hour at the gym and still fat
3) Puffy eyes
4) Puffy-eye products that don’t work (Like Sabon, Origins, and Trish McEvoy)
5) A sea of heavy, sodden, brown leaves covering my lawn
6) Still can’t do a decent Choo-Choo Shimmy
7) People who care more about how a dinner looks than how their guests feel
8) When someone asks “How does this look” and the answer is “bad.”
9) No idea for new book
10) Read my (husband’s) lips: No New Babies!

Keys to the Uinverse

The nerve cells are one of the wonders of the uinverse.
–Little Susan Senator, 5th grade science paper ending.

That last post of mine (yesterday) was written after a three hour drive and with a headcold!
This one will be far more straightforward.

Keys to the Universe (no-fail items or people or activities that truly do what I want them to do)
1) roasted, salted almonds, 365 Brand from Whole Foods. The perfect salty, crunchy Atkins-friendly, heart-friendly snack. For an even bigger charge, have them with a cup of ultra Splenda-sweet Peet’s French Roast decaf and just a little cream.
2) hour at my gym. Even if I’m a tank after Thanksgiving, working out and then soaking in the hot tub surrounded by friendly, pumped women gives me the illusion of slender fitness.
3) Nat with Julie, our new tutor. She is a self-starter, bright, sweet, and warm and really gets him.
4) Tivo episodes of Seinfeld. Consistently funny and wacky, and they are brilliant at tying together all the stray threads introduced in the episode.
5) Haram Alayk by Natacha Atlas. Always always gets me dancing, even while driving.
6) Nap in the car while Ned drives. It passes the time and I wake up feeling great.
7) Plans to go out that night. Even if the night ends up no good, the anticipation all day long gives me a great day.
8) James McNair’s Pie Cookbook. Especially the cornmeal crust. Why does anyone go with regular pie crust when you can make cornmeal?
9) A good long cat cuddle and neck smush, (as long as you wash, wash, wash and take Singulaire after) They sniff and purr and look at you with those almond-shaped eyes!
10) Shu Umumera Liquid Fabric. It allows me to dry my hair naturally and all I have to do is then spray it on and crunch the ends for perfectly controlled curls. No effort, and works even better with a curling iron.

Friday, November 23, 2007

Adaptive Living

Typing on Precious’ keyboard is a zen-like experience, because half of the letters are completely gone, rubbed away from so much sweaty use. I find I have no problem with accuracy, however, because I learned to touch-type while in high school, a skill that earned me many an unsatisfying temp job as a young woman. It is my acrylic fingernails that get in the way of perfect typing, far more than the lack of letters.

Ned, Max, and Laura often laugh or exclaim over my odd keyboard and my ability to use it anyway. It is a small but satisfying example of how well humans adapt to their surroundings. I also understand increasingly how much I have adapted to living with Nat, and how easy it is to know him, while others feel mystified by him. Does he find it easy to live with us, who obviously adore him, or is it easier for him to be at school, where his day is full and regimented into predictable time blocks? These days I am able to understand his “silly talk” and interpret it, and he always looks startled and yet happy. He is so happy in general these days, knock wood, it is a joy to see. He is in a peak right now, eminently adaptable, flexible, talkative, charming. It is a growth phase, where I can learn more and more about him, and he can take in more and more around him, effortlessly it seems.

At Thanksgiving the other night Dad told a story of a Polish woman whom some relatives knew who had hidden dozens of Jews during the Holocaust. For years they had hidden in her house, and because she was friends with the Chief of Police, he would warn her whenever the Nazis (“those Devils,” as my Polish Grandma called them) were coming, and they would travel through tunnels that had been dug, out into the woods. This enabled them to survive.

I was thinking about conditions that people have to adapt to. Sometimes I wonder how (God forbid) I would do in a situation like the Holocaust. Would I have figured out a way to survive those camps? Apparently a relative of mine (whom everyone always thought of as crazy) Joe Glotzer, a Provincetown artist, survived a mass execution during the Holocaust. He hid under several dead bodies and lay there for a while until it was safe to burrow out. (When I asked in what way was he crazy, Mom said he made inappropriate remarks, often asked women if he could paint them nude. I wondered out loud if perhaps he was always inappropriate, and that maybe it was not the Holocaust that did it to him but genetics? But of course, who could blame him for being “inappropriate” anyway? Imagine surviving such a horror!)

And yet also, in the same family (Dad’s side, the Senators), his parents and sisters remained in Warsaw rather than come to America with Irving (Grandpa), Nathan, and Jerry. They perished in the camps. Unbelievable. Why would they stay?

I often wonder if I would know, were something terrible like the Holocaust to come here, (God forbid). Would I feel that this was the time to leave, or would I fall back on hope and optimism and remain behind?

Why am I thinking about this the night that I got back from Thanksgiving? You decide.

Wednesday, November 21, 2007

In the Navy

And you, Pharaonics navy blue spiraling jewels, may be my next Bhuz purchase…
Really, now, how could I not?

Two Posts for the Price of One

Going to New Jersey (Laura’s) for Thanksgiving, so today we begin our trip by heading to Connecticut, to M & D’s first. We’re going as soon as the pie is done and also as soon as I’ve xeroxed the Lincoln Lines and distributed it. Also, as soon as I’ve packed. (None of them pack. It’s always me, and because of that attitude, it always will be.) I was hoping to work out, because I don’t know when I will next, but I doubt that will happen (besides, my hair is behaving and sweat would ruin that).

Last night we had C & W, perhaps our oldest friends, for dinner with their radiant little boy. They now live in Florida, so it’s been a while. I made meatballs with spicy pork I had frozen left over from my birthday party. They were bland, but still good. Also lots of wine — they like red, we like white, so each couple had their own bottle. And three different Ben & Jerry’s — Ned’s favorite is Chunky Monkey, (banana and chocolate chunks, too bad about the walnuts) so I had a few bites of that, but not too much. I bought Half-baked with cookie dough and brownie mix chunks (!) for the boys and peanut butter cup as the default. (I must admit to nicking a few chunks of peanut butter cup as well. So incredibly good!!)

It’s one of those relationships where as soon as they walked in we fell right back into conversation as if we’d just seen each other yesterday. A is the same as always, sharp witted and funny, on the opposite end of the political spectrum from me in some ways, nose-to-nose in others. C looked beautiful, and there was a lot of news to catch up on. She teaches aerobics and we talked about the idea of combining our talents and wishes to have our own studio. But how? She’s way down their in Florida, and I’m up here! I’m going to visit her in February and maybe we’ll find a way. If any of you have an idea that doesn’t involve moving, let me know!

Benj played with their little guy the whole time, even though M is half Ben’s age! M is a bright and chatty little boy and interested in the same exact video games as Benj somehow. So, a match made in heaven. Nat was nearby, and there was a lot of giddy silly talk and fast walking, the latter of which is sometimes a precedent to mischievous behavior, but we are not in a phase like that (knock wood) and my heart goes out to Lisa in Nawlins who is, right now. (Trust me, Lisa, it will pass, and you will still find fun and happiness during this time!)

I’m thinking of getting Beast a 504 plan so that his teachers will know to accommodate him in certain ways academically. I wish I could instruct them not to give him assignments that force him to write about mushy emotions, that just throws him. He gets in the blackest moods whenever he is asked to “write about something you are grateful for.” “LAME!” he says. Ah, Little B.

But I — Mushster that I am — love that assignment, so here is mine:

I am grateful for my friends A & C
Also Ruth, Lisa, Miriam, Beth
W and E
College friends John A, Bruce, Danny
Paul and NancyBea
And newest friends, Don and Sonny
And of course, for Nat, Max and B
For L, J, K, and P
B & A, Grandma O, S & E, Y and P
I love love love my M & D
Brookline Schools
Brookline pols
my therapist and Ben’s Dr. P

I love all my readers who are friends
I hope your kindness never ends
Thank you ASD Mom, Autismville, Teresa, Maddy,
Jan, Jen, Melinda, Lisa, Tina G
Also big thanks to Guy Rude
You must know he really is a lovely dude

I love Silly Talk (hoom, heem, and feen)
And Daffy Laughies and sideways hair
And overgrown beards I adore
Large stinky Vans
Left to fester near the door

I am grateful for Atkins Diet
If you want to lose quickly, you should try it
I am also grateful for carbs like bread
cake, ice cream, and the fact that Ned
is not a carbie

I am grateful Max once bought me a Barbie

I am grateful for bellydance
and that my abs no longer cause a jelly-trance
I am so thankful for Arabic pop
Especially Natacha Atlas and Hakim
Who send me over the top

I am grateful for love, laughter, and life
And of course to God
Who made me Ned’s wife

I wish happiness to all of you out there
Who may have just a little too much to bear
Be good to yourselves
Be good to each other
That’s about all
I intended to cover.

Monday, November 19, 2007

Catching My Breath

I am so excited because I am going to write about the Baby Bellies class — the ups and the downs — alongside how Benj did “Kids as Teachers” one day in his fourth grade class. Sort of compare my experience as a hapless BD teacher of little Jewels, Ben’s experience, and Ben’s teacher’s vast experience as a decades-long veteran from Brookline Public Schools.

Oy, Baby Bellies. They are so sweet, so scattered. There, like nowhere else, I have learned a bit about not taking myself too seriously, a great lesson for me. As two of them split off from the group and just fooled around on the gym mats wearing their trays on their heads, I felt the dusty, dry mouthful of frustration today, but I stood there, regrouped, and got over it.

I had that same feeling in my class yesterday as I tried to master a hip lift traveling step with alternating sexy hands. It looked fantastic when Najmat did it, but on me, it’s like I have a headache or I’m saluting or something. Lisa wanted us to do it together in the Middle East last night, and I tried, but I was pretty embarrassed. I’m much better with things on my head, I guess.

I feel I have to apologize about writing so much about bellydance, it can’t possibly interest that many people, but it is in some ways my guilty pleasure. There is a part of me that feels I shouldn’t be doing it, I shouldn’t be enjoying myself so much while people in the world are starving, that kind of thing. I feel like why doesn’t every woman know about this and do it? Doesn’t everyone want to feel good? But I know that is simplistic. Everyone finds their own ways of feeling good — hopefully.

One of the main ideas I want you to get out of reading this blog is that life is for us. We are here, I believe, due to randomness but also due to Someone’s sufferance. I am not a religious freak (I am not all that religious) but I do feel some kind of presence sometimes that is kind of holding me up, loving me, helping me. Call it what you will.

So there is something about movement in a certain way that raises my endorphins and my adrenaline, all those nice scientific words, and reaches my mouth and makes me smile. Or maybe it is the connection between my eyes and Ned’s or Nat’s (my main audience). They are watching me with interest, and every now and then Ned let’s go a “wow!” or “Very sinuous.” Ned appears to be a small complimenter, until suddenly he lets loose with something like, “You are the deluxe model woman,” or calls me “Face!”

I think that as long as you can keep surprising each other and taking one another’s breath away every now and then, you will continue to have a good marriage. We stumble upon things that startle one another into taking another look. Like pretending we just met, at a party, like the other night. Or the poems he has written me over the years. Or when I make him something with bacon or coconut in it.

I think the dancing takes my own breath away.


There once was a gal, SusanLilia
For whom dancing became her life’s thrill-ia
She danced when she could
Even when ordering food
(Alas, it never helped pay any bill-ia)

Tabblo: A Great Way to Start the Week

Sunday, November 18, 2007

The Family Parties

Last night we went to a birthday party of two friends who proudly proclaimed they were turning forty this month. (Aww, only forty! How cute!) They had rented out a room in a club in Boston, hired a DJ, and made the theme be ’80’s. (I guess the ’80’s has some allure to the young folks; having come of age in the ’80’s I can tell you it was a cultural/musical/fashion wasteland. Big hair, big shoulders, flats and Madonna eyemakeup, Cyndi Lauper, Boy George, DuranDuran, Michael Jackson…)

I was in a bad mood beforehand because I did not know what to wear that would be both flattering and ’80’s like. I started out in a long frothy lavender tulle ballet skirt, pink lingerie top and bronze wedge platforms, only to realize this was utterly wrong (it was just that I really really felt like wearing all that! And I still have not worn those shoes!). I pulled out a black miniskirt and black stockings, pointy black stillettos, huge pink plastic earrings, and clipped my hair back so that it rose over my forehead. Blacked my eyes like a raccoon, blah blah blah, Ned’s jean jacket with rolled up sleeves, and — voila! I was Stockard Channing meets Desperately Seeking Susan (remember that movie??). Ned met the costume requirements by putting on a polo and flipping up the collar.

We asked the boys if they wanted to go, since kids were welcome. Nat did, so after a discussion with him about what he would wear:
“Nat, how about this new shirt [flowing beautiful blue polo]?”
“No new shirt.” [Why? Because of the tags all over it that I should have cut beforehand! Damn you, tags!]
“Nat, you have to change [out of the Special Olympics shirt] because this one is dirty.” [and smells like an Israeli bus]
So Nat pulls out another tee shirt and it is — Special Olympics! Sigh. But still — so cute, what does it matter? Teenage boys have — and shall forever insist on — their own idea of what to wear.

The party was excellent, despite all preliminary nervousness. The food was yummy – bouquets of chocolate-dipped fruit, lots of wine, cheese-filled something-or-others. Lots of people I had met before, so it was easy to mingle. My friend Michelle/Najmat performed, so Nat saw his first (real) bellydancer! She is my favorite bellydancer, I think, which is why I am now taking classes from her.

And the ’80’s dancing was — fun! I learned a line dance from a 12 twelve year old girl and I relearned the Macarena. Nat and I danced a lot — he did a lot of hopping, flapping and grinning, and I did bellydance in spikey heels (what a pair we are). Sometimes Ned and I danced and once, just for fun, we pretended we had just met. I highly recommend it, especially for couples who have been together a long, long time.

Saturday, November 17, 2007

Sonny Came Home

Sonny, Yesterday my life was filled with rain
You purred at me and really eased the pain
–Bobby Hebb (and me)

My friend Don did a real mitzvah yesterday. He offered me his cat Sonny on a trial basis. He saw that I was sad about the whole Guardianship process for Nat, the whole transition that is starting, and he loaned me his kitty. I had never met Don face-to-face; he was a friend of a friend who got to know me through my blog, and I through his.

So Sonny came home, as Shawn Colvin would say, although there’s no arson going on here, thank God, knock wood. I spent yesterday (aside from being with my parents and Benji’s class for a turkey-less Thanksgiving feast) with Sonny, getting to know him. I gave him his little stinky food (Ocean Whitefish, a cat with sophisticated tastes), his kibbles, his water, and showed him where his litter box was (Max’s bathroom, behind the clawfoot tub, next to the radiator).

My right eye blew up and my left elbow crease erupted in hives. (A few hours after taking Claritin I was back to normal, and attended the Shriver Kids-Special Olympics-Eunice Kennedy Shriver forum at the Kennedy Library. I had a second row seat, behind Larry Lucchino and Ted Kennedy. I made friends with Phyllis Karas, who wrote The Onassis Women, and was there for People Magazine. I loved hearing Eunice K-S talk about how not only incredible luck and familial love, but also adversity and witnessing the sting of rejection (on behalf of Rosie) forged her vision and determination. I want to get inside her head and write about her and Rosie somehow, bouncing off me and Nat.)

Don assured me that all Sonny would want is a lap to purr in. This is true! He has determined that I am the Momma, and he comes to me, purring, and kneading me as if I had kitty milk in my thigh. But in order to continue with this relationship, one would have to keep cats entertained as they get bored real easily. Hence, if you want it hanging around you, you could indulge in Cat World to get to know all the ways you could keep it happy.

Nat is skittish around him. He thinks the name of the cat is, “No Cat.” We have tried to tell him that Sonny is just a little furry friend, and little by little Nat is relaxing around him. It’s funny how scared he is of Sonny!

Max likes him but declined holding him. 🙁 But he is very friendly to him, which is nice.

The best part is how Benj loves him. Sonny settled next to him on the yellow couch and Ben smiled and smiled! He also slept in Ben’s room most of the night. At 4 a.m. there was a cat-based disturbance, so I went downstairs to sleep with him on the couch for a few hours, to get him to leave the rest of them alone, and to give him the lap extraordinaire: Me in jammies, under blankets, asleep and warm.

It is adorable and poignant beyond words. So here are some pictures.

Friday, November 16, 2007

NovemBUR Commentary

Tonight in Boston there is an event for Special Olympics, honoring its founder, Eunice Kennedy Shriver, at the JFK Library. Maria Shriver, and her brothers Mark, Anthony, and Robert. will be part of a forum on the Special Olympics movement. Their brother Tim could not attend, which is too bad because he’s the actual CEO of Special O — and a friend.

Our local NPR station asked me to do a commentary for them as part of their coverage of this event. I am attending the event as a member of the press, and I am very, very excited about it. It is no secret how much I love SO for what they have done for Natty’s life. Last night Ned and I went into the studio at WBUR and I did my fourth commentary for them; this time, on what Special Olympics has meant to us as a family. (Interestingly, for the last three years on Nat’s birthday WBUR has asked me to do a commentary! I get very busy writing around Nat’s birthday, and do some of my best stuff because, well, you know.)

Ned brought some live audio from a race of Nat’s, and the engineer fit it into the broadcast for Morning Edition. You can listen here. Or just read it, but it is worth the click.

I sometimes wonder what was going through Eunice Kennedy Shriver’s head when she came up with the idea of Special Olympics and turned her backyard in 1962 into a summer camp for disabled kids.

They say it was for Rosemary, her older, learning disabled sister. That Eunice saw how difficult things were for her and was inspired by her struggle, and that she also saw that including Rosie with the right support worked out well.

It is certainly true that having a disabled person in your life can really alter your perspective. You become very familiar with the dark underside of the world, the realm of “can’t do” and “will never be.”

My son is autistic, and I have been jamming my foot into closing doors all his life. From the renowned doctor who shrugged and pronounced him “retarded,” to the synagogue that would not let him have a Sabbath bar mitzvah, to the local principal who was afraid to have him attend her school.

One day, however, a door swung open wide where we least expected it: sports. Nat, at age elevn, tried a gymnastics class run by Special Olympics. The coach was inexperienced with autism but full of energy and patience. She worked him hard and got him to the State Games that summer. We experienced the odd sensation of feeling both proud of our son and of being able to trust others with him. Then at fourteen, Nat learned how to swim, on the local Special Olympics swim team, and it was the first time he ever seemed to look forward to something. “Swim races, swim races,” he would say over and over, with a huge grin. Now, at eighteen, Special Olympics taught him how to be a part of a basketball team.

Our life with Nat is often very hard, but at his sporting events it is not. There, he’s just another team member playing his hardest. Nat is just one of the guys, and we are like everyone else. There is no “can’t” in Special Olympics. Whether she knew it or not back then, I think this is what Eunice Kennedy had in mind when she set up that daycamp. Even though the Special Olympics athlete’s pledge is “let me be brave,” the stunning thing about Special Olympics is, we parents don’t have to be.

Thursday, November 15, 2007

Happy Boo-rthday, Nat!!!

I was able to crawl out of my black hole this morning and squint at the bright daylight and yellow leaves and think, like Dido, “It’s not so bad, it’s not so bad.”

My boy is all grown up. Eighteen years old. A man. Long, gangly, hairy arms and a beard on his face. But I went into his room before he was fully awake and I kissed and kissed him and it was like putting my lips on cake.

And speaking of cake…
Nat chose a Duncan Hines yellow cake and chocolate frosting. Benj made Nat’s cake. Ben. Yes, Ben. Well, I helped. And so did Nat. And of course there were ulterior motives, but let’s not get into that. He was really, really sweet. He was grumbling about what Nat liked as if it was all so dumb, but he kept on working at it and telling us his ideas. He had the idea of adding a rectangle of vanilla frosting on top of the chocolate frosting! Genius. Sweet B!!!!

We woke up with a bang this morning. No, not that kind! A real loud noise, like something fell over downstairs. We were scared, so we went together to check it out. For some reason, a picture had fallen off the playroom mantle and had knocked over to other things. We could not figure out why. I said, “Is Ghostie back?” And Ned said, “Maybe.”

I wonder why she is back? Our houseghost was always a benevolent presence, if a little mischievous. She seemed fond of hanging out on the second floor hallway and front staircase landing. Once Ned looked up and saw me coming down those stairs. He looked again, and there was nobody there. Another few times Little Tiny Benj complained about a “little blue ghost with a silver hat” in his room, which we think was the fire hydrant outside. But still. He constructed a ghostcatcher to get rid of it, and we thought it worked.

Until now. It could be that they were a pair, or that we have a new one? Or else it was a vibration from the heat going on. Uh-huh. I think whoever it is wants to wish Nat a happy birthday! Just next time, let us sleep a little later, okay? Boo-tiful.

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