Susan's Blog

Thursday, October 12, 2006

Extreme Parenting

I woke up at 5 a.m., to dark rain. But I don’t care, unless it makes my flight dangerous (I’m going to Toronto today to participate in Estee’s conference, The Autism Acceptance Project: Redefining Ability and Quality of Life — with such a subject, how could I not participate??!! Very new and exciting stuff.).

My presentation is a power point that I used to call “Extreme Parenting.” But now I call it “Making Peace with Autism.” I talk about the arc of our family life, broken into roughly three phases: 1) Worrying and Wondering; 2) Diagnosis, Learning Curve, Grief; 3) Understanding, Acceptance, Connection.

I also have some “talking points,” such as:
1) Trust your gut;
2) Figure out your priorities;
3) Get the facts and support;
4) Be as eccentric as you need to be;
5) Give yourself (and everyone else) a break;
6) Success is how you define it

I illustrate these points with excerpts from MPWA and slides from over the years. I talk in between about this and that, stuff that just happened, stuff I’ve been thinking about (like the disability baggage one carries around, the meaningless meaning of terms like “Low-functioning;” — I love to end with that one and then to show pictures of Nat being bar mitvhahed and riding his bike with me. Low-functioning, my Seven-For-All-Mankind blue-jeaned ass!

Look at my baby. Natan-El, “Gift of God”

Monday, October 9, 2006

My Mother, My Self

The other day, after I wrote Dancing With Myself, Ned pointed out that I hardly ever blog anything good about my mother. I was taken aback by this, and I wondered if it were true. After Mom read that post, she laughed into the phone, saying, “I wish I’d been a better mother.” But I heard that little twinge, that ache.

This is the last thing I want her, or anyone to think!

I told her that she was a great mother, is a great mother, and that we are all human and I am fascinated with looking at that human, a.k.a., difficult stuff. That’s just me. I don’t know how to begin expressing what I feel for her, it is so complex, and so much. Dad is easier because he is so different from me, he is funny and really stands out as the Head of the Family. I can stand back and observe him and articulate the Dad-ness of Daddy.

But Mom. Oh, Mom. Pardon my lousy poetry, but I need to post this:

My earliest memories
Back they take
me to a time
My heart still aches
For your sweet touch
Your voice so near
A whispered scent —
when I’m Sukey Dear

When all was well
And life was fine
How time does tell
Oh Mommy mine
That you were there
Always for me
A soul so fair
You’ll always be.

The Good Mother


Today I have been a good mother. It feels like it has been a while. I hate that. Why is it so hard for me to suspend my stuff and transition to the kids? What is the block to just sitting down with them, or putting them in the car and going somewhere with them? I still do not understand that. I am very dismayed that it still happens to me, after all these years. Maybe it is because Ben doesn’t like going places like out to a park, on bikes, the beach, or malls (unless there is a Lego store). Nat doesn’t say where he wants to go, but I cannot honestly say it is because of Nat having a potential tantrum; it’s been so long since he has been difficult in public. But maybe it is partly that, because it doesn’t take much to make someone gun-shy. The only time I saw Nat showing an interest was when I bought him a pair of professional cleats for his soccer practice from this buying guide at as even my younger brother who is a coach for an ivy league high school team uses the same site to compare and buy his cleats.

I believe my reticence is deeper than just Ben’s intransigence or autism-tantrum malaise. I think this is an issue of existential inertia, whereby I can’t seem to move myself out into the world, even when out in the world is a better place, psychologically or geographically, than where I am. (My dad would call it the Roman phenomenon of “Sittus on Fattus Buttocks.”)

Also, there’s the physical explanation: I was away for an overnight in Ohio and slept poorly for three nights in a row. Last night was the first night I slept really well. So I felt bouncy today. I felt like I knew how to keep moving, what to do with myself. I did some vacuuming, straightened up the house, washed bath towels, returned something for Max, sewed a hole in a slipcover, unclogged a toilet, watered and groomed indoor plants, and shopped for food. I felt really good just getting all that done.

Then I sat down on my windowseat and Ben showed me his latest comic he had drawn: The Egg Man. It is about an egg and what happens to him. It is told in the first person, and the egg man is not a happy being, because, of course, he gets eaten in the end. It is beautifully drawn, funny, and sad. Oh, Benj.

Then I took Ben and Nat to McDonalds, a common denominator, (Max was out, on Newbury Street, with one of his girlfriends; yes, he has around three at this point!) and we enjoyed our junk food. I dragged them into a shoe store with me (I desperately need to get knee-high, high-heel black leather boots to tuck my new skinny jeans into, and ballet flats for belly dancing). Mistake! They hate those kind of stores. Nat behaved great; Ben was atrocious.

Onto the toy store. Nat wandered while Ben selected a small Lego kit he had saved up for. I made Nat choose a tactile toy to buy, and we went home. We decided to go see the new track, which has been redone and the new NFL fake grass they’ve put in, but there was a football game going on so we couldn’t park.

Back home, we started to take off our shoes and unwind again, and Nat picked up a book that he really wanted to look at with me. He could see that it said “Special Olympics” on the cover and he was very eager to see it. It is Roger Corman’s photographic essay book called I Am Proud, and Tim Shriver lent it to me. Nat loved it! Page after page of swimmers, runners, soccer players!

Then my friend Lori knocked on the door. She and Andy were going to a nearby farm to see the frogs and pumpkins. So we went along. They had huge pumpkins there, misshapen and glorious ones that had to be almost three feet in diameter. Pimply squash, poxy gourds in so many colors! We saw the frogs, and watched a yellow Labrador Retriever jump into the pond, and then stood back while he shook himself off. The sun was blazing hot. We needed a drink, so we went into the market to get water. I bought the boys chocolate pumpkins, fudge, and candy apples, as well as corn for a cook-out tonight.

Ben was not happy with his apple (of course!) because the candy was gooey, not hard like a red lollipop (I secretly agreed. I think candy apples should only be the hard red candy kind.) Plus they had coconut on the outside. But Nat just quietly and voraciously chewed it up and then sucked down his water.

Then home, and rest. The therapist is coming to work with Nat soon. Ben is now watching cartoons, but I think it’s okay. We did a lot, for us.

Sunday, October 8, 2006

The Low Road

It is only now getting light. Even in the semi-darkness of dawn I can see that the leaves on the trees are past their prime, with a brownish cast to them, set off eerily by the orange street light. I woke up way too early this morning; my mind is already on the go, frenetically bouncing from topic to topic, trying to locate the cause of my buzz.

And it’s Nat. I am breathlessly watching new progress and wondering what to do to nurture it, and what it’s about. Of course, I suspiciously fear talking about it a little bit because I don’t want it to disappear. I know that is “magical thinking,” but without enough sleep it seems more real to me than in the comfort of soft, yellow daylight.

Nat is smiling more than ever. He seems more flexible, more willing to do anything we’re doing. He also seems more jittery; he mutters to himself constantly, in his own language and he will not let me join with him in that. But I don’t care. I feel his happiness so clearly, he could be spouting farts and it would be okay with me. Though far more problematic with the public and his brothers.

In her very articulate and thought-provoking blog, Kristina Chew has brought up the concept that stings like a bee, and I don’t mean Mohammed Ali: the whole issue of “high-functioning” and “low-functioning” in autism. I remember when Nat was first diagnosed, and he was termed “Fairly high-functioning.” Now, he is more frequently said to be, “fairly low-functioning.” I believe the designation is all about how much a person talks. As I said to Kristina in her comments page, what a completely Neuro-Typical-centric definition of functioning! Why the premium on talking?

Or is the definition even more insidious? Is “high-functioning” code for “like normal?” What does that mean? “Acts like a ‘typical’ kid?” Meaning what? Mouths off to parents, dresses badly, considers Yes to be great music, pretends to be interested in high school clubs only to get into a good college, is really only looking to get laid or as close to it as possible without consequences? (Oh, sorry, I just described myself as a ‘typical’ teeenage girl back in the 1970’s). Oh, yes, I would have been considered ‘typical,’ and ‘high-functioning.’ You could not shut me up! I was an A student, I was on two teams, (field hockey and track) I always had a boyfriend, had a best friend, was part of a group of kids just like me, I was in National Honor Society, Ski Club, Latin Club, went to an Ivy League school, blah blah blah .

Which brings me to my point. Nat is, perhaps, none of the things mentioned above. Well, he is on more teams, however: swim team, soccer team, basketball team, and maybe ski team (we’ll see how it goes). Nat does not go after girls (or boys); he is not in any clubs (his school does not have clubs). Nat wears whatever I put in his drawers. He doesn’t know from Abercrombie or AE. Nat will not tell me what is on his mind.

But neither will Max. Maybe for different reasons. Or maybe because neither of them knows how to figure out how to express such a thing.

But, Nat, as I have said, is on at least three teams and has been on more in the past. Nat helps me make dinner, clean the house, bring things in from the car, mow the lawn. Nat eats anything I put in front of him; any concoction I’ve attempted in the kitchen. Nat rides a bike, uses an iPod, reads, does all of his schoolwork without complaint.

Nat had a bar mitzvah. Nat says the prayers at the beginning of any holiday we are celebrating. Nat will always give you a piece of whatever he is eating.

Nat has his own language which he does not want to share with us. Nat likes to pace or lie around on the weekends, rather than I.M. with people or hang out at a mall or spend money. Nat may not even understand money, but he does understand the moment I am finished paying in a restaurant, because he waits for that before he stands up.

Why not make “high” and “low” functioning be about how happy a person is? In that case, I am, half the time, “low” functioning. Nat is far more “high,” in that case.

I can’t begin to convey the specifics of what makes Nat a person; a full, deep, complicated young man. I know what I feel when my eye picks him out, walking back and forth in a crowded airport, and I make fleeting eye contact with him, and there is a burst of lightning between us that I know he feels, too. He just doesn’t go on and on about it the way I do. He notes that I have arrived (yesterday at Logan airport), and instead of pacing back and forth, he starts walking straight, out of the airport. It’s Mommy. Yes.

How do you draw a definition around an entire human being? “High.” “Low.” It is about as telling as a chalk outline of a crime victim. And as dignified.

Saturday, October 7, 2006

Coffee Talk

Sitting here on a big soft white bed in the Beachwood Hilton in Cleveland Ohio. I’m giving a keynote in a few hours. I actually slept well; it probably helped that I had two glasses of wine and an Ambien. I still woke up at 2:30 because of somebody out there in the hall, but I drifted back to sleep. I can’t believe these pillows, how soft and yet firm (enough) they are. Nat would be in hog heaven here.

I brewed their Lavazza coffee with trepidation. One of my peeves in life is bad coffee; but this stuff wasn’t bad. Nice mug, too. My favorite coffee is Peet’s French Roast; even better if Ned makes it before I get up. Then I come down and bring him his mug, the big yellow one, with two teaspoons of sugar! I kind of like Starbucks — who doesn’t, despite it’s being the Microsoft of coffee, gobbling up every street corner in America, putting all the smaller coffee joints out of business, turning America into one giant strip mall, yadayada — but only a grande decaf breve misto in cold weather and and iced decaf in hot weather. I like Starbucks socially. It is my office; it is where I meet friends and colleagues for a nice hour and a half. Sometimes I write there, but rarely. I prefer being alone in my little nest in the the windowseat.

So now I’m in a little nest in the hotel bed. I wish Ned would come with me on one of these trips. I never remember how much fun it is to be in a hotel alone. I loved going to dinner by myself last night. The bar was right in the other room and they were playing all the trashy Top Ten hits I listen to when I work out! After I had my comfort food: glass of pinot grigio, caesar salad, french onion soup, a little of the bread (! That was my dessert) I went into the bar. It was strange. I have never gone to a bar myself. Never. I got a wine and started Ned, telling him what was going on. A lot of men, everywhere. Sports on t.v. Women dressed to the nines (except me, Ms. Laptop, bloodshot-travel-droopy eyes and blue jeans). I was in Testosterone City. A fun place to visit, but I wouldn’t want to live there. A gorgeous man named Steve came up to me and asked eagerly if I was looking at porn. I almost told him he needed to work on his line. But I told him I wasn’t, I said I was and he offered to buy me my next drink. I said, “sure,” but I knew I was only having this one. Maybe I should have just said, “No thanks.”

Halfway through my drink I got the feeling I should go to sleep. I was slurring my I.M’s. So I went back upstairs to my room and finished I.Ming with Ned, and also called him one more time on my cell. It’s fun to travel alone but I miss him so much. He’s like part of my skin, and sometimes that’s not so good (too familiar) and sometimes it’s fantastic and wild (guess when) and sometimes it hurts, like now, when he’s not here.

Coffee’s almost done; time to go down to the restaurant for breakfast and more mediocre coffee! Wish me luck this a.m.

Friday, October 6, 2006


Can you believe how beautiful this is?
Thank you, NancyBea. That blue just made my day. Wish I could grow those; all I got were leafy vines!

Old School

The other day Ned and I visited a possible new program for Nat, for the first time in about 6 years. He has been at his current school for so long, longer than any other placement he’d ever had. We love where he is primarily because they love him. This is not something to take lightly when your child is challenging to educate. Teachers and administrators, no matter how idealistic and good-hearted they are, may not realize the particular investment of energy, brainpower, and love that dealing with a kid like Nat involves, and even the best of them may become burned out, feel put-upon, etc. And mediocre teachers of the autistic — and you probably don’t know who you are — watch out!!!!

Since the summer ended, although it may appear to you that my energy has been devoted to writing, belly dance, illicit thoughts about men, and feeling sorry for myself, the bulk of my energy goes to my babies. I just don’t always want to talk and write about them because some of the words related to them are so deep and rooted that it takes a lot of energy to yank them out before they’re ready.

But my thoughts about my boys — and today I’m writing about Nat — have ripened to a degree where perhaps I’ll do a little harvesting, in honor of Sukkot, which I believe is tomorrow. (Five days after Yom Kippur, big fat yellow moon, days of plenty in the garden = Sukkot, the Feast of Booths, the celebration of the harvest.)

One reader/new friend suggested to me that perhaps my looking around at new placements had to do with Nat having asked a question for the first time. Perhaps, but there is more. Since August, we had reduced one of his meds (Resperadone) and switched him to a different SSRI (from Paxil to Luvox). Almost immediately, we saw a small awakening, because the Resperadone acts as a relaxant, I believe, and a buffer against potential aggression. But aggression has become such a non-issue — knock wood, knock wood, please God don’t take this away — that we felt we could adjust downwards. Resperadone is a serious drug, with potential devastating side effect, and we don’t want him on it at all, but a little bit has been necessary, and so we monitor it very strictly, along with a specialist at Children’s Hospital in Boston.

As a result of the decrease, Nat is more “on,” and more visibly nervous, too. (Poor sweetheart.) But we think that we can help him feel better just by helping him express himself. It all comes down to communication, being able to pull out what is in your heart (for me and for him). More and more, it appears to me that helping Nat express himself is the key to his universal progress and peace of mind.

So we have hired a consultant to work with him after school, in a very positive, cheerful way, to get him more in the habit of using words, to get that part of his brain in better shape. It is an error-free training, so there is very little frustration for him; they give him the answers when he doesn’t know them, and they vary the exercises so he doesn’t get too bored. I’m sure it is a bit boring for him, but he still gets enough down time in between.

The home program appears to be going pretty well. So Ned and I decided that maybe if Nat was going to continue progressing verbally, we should consider a placement that is the next level up in rigor but also in potential. This program is housed in a typical high school, about half an hour away from us, and is hugely vocational, but also has a lot of social activities built right into the day (and after school, and even at night). We visited several classrooms and could easily imagine Nat in them. The teachers looked bright and warm, and the program director had a bouncy, can-do attitude.

But I am far too old and cynical to fall in love with a new school program. I’ve been beaten down by high expectations and seduced by wonderful program directors and fancy facilities. Where Nat is now has a far more institutional feel, but inside, beyond the dreariness and rigidity, are many young, lovely teachers who think Nat is a star. If he slides into a bad period, they stick by him and help him remember how to act.

That’s always the piece that gives me pause: what if he has an aggressive phase? How will the new school handle it? Will they call me in at the smallest sign of pinching, hair-pulling? Or will they jump in and problem solve, still seeing Nat in all of his glorious potential?

Whatever we do, we are going to move slowly. I am not used to that, but that’s what is needed. I checkout out the program. I’m going to a meeting at his current school at the end of this month. I’m going to see if there’s things to tweak there. I’m going to look carefully at his progress and his work. I say, “I” but it’s really “we.” Ned and I are going to talk a lot about this and try to figure out if we can gently push Nat upwards, into a slightly more challenging atmosphere, and hope that there are plenty of capable, loving hands to pull him in and hold him there.

Thursday, October 5, 2006

It’s All Oeuvre

Did I disappoint you?
Or leave a bad taste in your mouth?
— U2 “One”

Today I faced up to a couple of pretty big truths. One, I can’t tell you about. But suffice it to say I made a little leap in understanding something about myself and I am feeling pretty good about it. Whatever happens, I am going to be okay because at least now I am clear and honest about how I feel, and about what’s going on.

I went out with Ned for a little coffee after dinner and celebrated my new understanding. Then we watched The Office and had some good laffs.

The other thing I figured out is related to the first in that it involves not forcing something. I have been forcing a book. Raping the muse. Not only that, I have been forcing a marketable book. For me, the only thing more deadly to my creative process than thinking “marketable” is an outline. I hate outlines. It’s strange how, I was sitting here today crying because I was realizing the first Big Truth (see above, and then feel puzzled because you don’t know what the f*** I’m talking about), and I wrote it all down, and then suddenly it was like a dam broke inside of me, and I was crying about my lack-of-book. And then it hit me: I have a God damned book. I have my novel! I wrote that thing all spring and summer and it is done and I have not honored it in the least, because I kept thinking how the next book has to be an Important one. The next book has to either be even more about Autism or about Something Big.

I have completely disregarded my novel as anything serious because I knew I was disappointing everyone. And I knew they don’t sell well. As predicted, my agent was not pleased about the novel idea because “they’re so hard to sell.” My editor was not pleased because she wants a continuation of MPWA. My friend Emily wanted me to snag this opportunity that has fallen into my lap, for a book that would no doubt make me Really Famous because of a certain connection I’ve made, and she knows an agent who can make it happen, etc., etc. I talked to that agent and, yeah, she’s really excited. I feel like EVERYONE wants me to write this Really Important Book, and I should. So I have sat down to write that Big Tome again and again and I just fall asleep. I went to start my Research, and I felt like a fraud. I felt the way I did in grad school, like someone eventually was going to point at me and say, “Ha! Look at her, pretending to do research!”

So then I tried to write it as a Susan Book, not a Big Tome, and I wrote three grafs and then felt only silence in my head. Silence that then made me want to weep. A writer without words is a very sad thing.

So today, while saying to myself about That Which Shall Not Be Named, “Why, why, why?” I, multitasker that I am, also thought about Dirt: A Story of Gardening, Mothering, and a Midlife Crisis. And I thought, a la JFK: “Why not, why not, why not?”

It may not be a blockbuster. It may not be a great literary Work. It isn’t important, and it isn’t the next big thing.

But it’s mine. And it’s already written. Now I should try to make it good. And find a new God Damned agent.

Wednesday, October 4, 2006

Dancing With Myself

Even before I wanted to be a writer, I wanted to be a ballerina. I’m not going to say, “What girl doesn’t?” because that’s crap. My sister did not. Ever. She was into her own kind of stuff as a kid; I actually don’t know what she wanted to be when she was little (I will ask her). It’s funny that we say when we are little, “What do you want to be when you grow up?” and then when we are grown up, we like to think about what we wanted to be when we were little. When we are little we know ourselves in a way that we can forget when we grow up. I think back to me and I can remember how I thought, how I felt. It was still me, but so much more naive. I can still hear my young thoughts and I smile at how passionate and sweet they were. But I also long to be her sometimes because she knew me without a lot of grown-up discouragement and “reality” knotting up underfoot.

My cousin Karyn (back then she was “Karen”) took ballet, tap, and skating. Karen was beautiful, is beautiful, with long straight black hair and almost black eyes. Once, when I was around seven, I opened Karen’s closet and saw a long row of “flairy” dresses; this was what my sister and I called dresses that flaired out from a sash at the waist. One of those dresses was gold lame. I could not believe that someone my age could have such a dress! But of course Karen did. She also had a great little skating outfit. I did not understand why I could not have clothes like this and lessons for things like that but Mom and Dad did not think it was “for me.” I guess I didn’t push the point, but instead tried to accept how others saw me.

They signed me up for Modern Dance, which I hated. Everyone wore all black and cut-off leggings. I looked at myself in the wall that was entirely mirror and saw my round stomach and muscular thighs and thought I was tubby. The other girls looked like black sticks. The dance teacher, Mrs. Taube, though slim, looked lumpy to me in her leotard and tiny skirt tied around her waist. Why doesn’t she wear a tutu? I thought. That was what I wanted. I would see the girls who were taking ballet in the class after me, like a box of candies, all sugar pink and frothy. I don’t know why I did not ask for something like ballet or a tutu; maybe I did once and was told, “No.” Maybe I felt embarrassed for wanting it, when really Modern Dance was so much more sophisticated, kind of the Anti-Barbie of dance. My parents were not Barbie people, either, though they bought them for me. But see, I knew how they felt about it, even then. That might have dampened my enthusiasm along the way. Playing with Barbie, like wanting a tutu or a gold lame dress, were like my guilty pleasures, even before I really knew what guilt was. They were the things I was not supposed to like, and yet I did. And the not-supposed-to added to the thrill.

I pay attention to that guilty pleasure thing now because I think it will tell me a lot about me, and who I really am, versus who I am supposed to be.

Eventually, as a twelve-year-old, I did take ballet, but it was a similar experience to the Modern Dance. Everyone wore leotards, some even pink, but no tutus. We were too old and “serious” by then. Tutus were for the little kids. Of course we were not actually “serious,” because if you are “serious” about dance you start as a little kid. Too late, too late, were the words that flew around my brain like mosquitos that you can’t really ignore. I looked in the wall-mirror and saw my emerging womanly body and did not like it at all; everything looked misshapen and wrong, squeezed into a pink leotard, stretched tight like a birthday balloon.

Decades passed and ballet became a thing to watch, an event to dress up for at the Wang Center or Lincoln Center; a birthday treat. Swan Lake is my favorite. The music is unbelievable. Ned hates ballet but every now and then accompanies me. The person who loves to go with me is Mom. It is not ironic. Mom always loved ballet; she and Dad just didn’t see it for me. They did not understand me fully back then, and I did not know how to explain myself to them. I did not know how to stick up for myself about that kind of thing; sure, I never took crap from anyone and even punched a boy at the bus stop once, but in terms of revealing a deep, inner desire that others did not believe — that was fraught with shame.

Sometime around April or May I looked at that Shakira “Hips Don’t Lie” video. As I watched her dance, I felt something grip me, a kind of longing, a hunger, sort of like looking up in Karen’s closet and seeing that gold lame dress. I wanted to be like her. I wanted to dance like that. Only now, even though I’m older now and not in my first bloom like Shakira, I’m not afraid or ashamed of what I want.

And the wonderful thing about belly dance is, you can be full bodied; the more voluptuous, the better. There is no lumpy. I am now taking my second series of classes, with a new teacher. She is a real disciplinarian. She corrects our form, even down to how and where our fingers point. Last night I learned a shoulder shimmy and a belly roll. I did it perfectly after practicing at home for two more hours. Just like Shakira. Well, like me, really, but that was good, too.

Yesterday I went to my belly dance teacher’s store in Cambridge. Two double doors, shut. Frame painted deep red. I rattled the knob, and the clerk swung it open. I looked up, and saw costumes hanging overhead, and on walls and racks. Feathers, gold and silver coin belts, bright colored fringe, sequins, sashes. I felt happiness and a deep forbidden thrill wash over me and I stepped inside.

Tuesday, October 3, 2006


I love to do parodies. I am a lesser Weird Al Yankovic. Think of me as “Weird Gal Yank-it, B****”

Here is one I thought of before coffee, about my latest addiction: belly dancing, and the result, injuries. (Though I’m really okay, don’t worry! This is just for laffs.)

(See why I need a real costume? I’m dancing in a %##$# bathing suit!)

Coccyx (Sung to the tune of “Toxic” by Britney Spears)

Oy vey, can’t you see
I’m in the hall
I twisted wrong
I need to crawl
It’s dangerous
I’ve fallen

There’s so much pain
I feel faint
I need a bolus
Of the Tylenolus
You’re dangerous
For my tuchus

Two thighs
on the ground
Stars in my head
spinning round and round
Feelin’ nothin’ now

With a twist of my hips
I’m on the ground
My coccyx has slipped under
Taste of old age
–I was so proud
I’m addicted to you
But you’ve injured my coccyx

Monday, October 2, 2006

About God and Good

I wrote this last night, then went to bed without posting it.

I look outside and the darkness of Erev Yom Kippur, 10th Tishrei, in the year 5767, has (appropriately) descended. This is supposed to be the holiest day of the year for Jews, and here I sit with my laptop feeling just a little bit melancholy that I’m not honoring it in the traditional way. Old habits die hard. By that I mean, I’m not going to services tonight and hearing the sharp, loud, breathy tones of the shofar (ram’s horn) or Kol Nidre, which is a tenth century prayer that you are supposed to hear three times during Yom Kippur. It means, literally, “All Vows.” Its origins are supposedly about releasing common folk from vows they made during the year which they did not fully understand. It then became a release of all vows made to God, but not to anyone else. It allegedly became popular throughout history because of the many times Jews were forced to convert to a different religion; Kol Nidre absolved them from these vows. My understanding is that Kol Nidre is a kind of erasing the slate, a way of beginning the Day of Atonement, Yom Kippur.

On Yom Kippur we’re supposed to think about all the things over the past year that we did which we should not have done, things we regret, things that hurt people or ourselves, things that do nothing to make the world a better place. I love hearing the rabbi recite all the different sins we may have committed, and then putting them into real life context: “for the sin we sinned before you by acting callously…” becomes “I was nasty or competitive with someone in the PTO.”

Mostly I think about how many times I just let Nat lie around without making the effort to engage him “purposefully,” which is good for his development, his independent living skills. I think about how I should also try to find that special connecting point every day, share a laugh or smile with him. Nat is like a big orange poppy, so wonderful to look at, delicate to touch (petals fall right off), finicky to grow.

I think about how to be a better friend to Ned, to shut up and listen to him more. Ned, my bouquet of daisies, easy to grow, abundant, bright and light and hardy, beautiful in a backdrop or in a crystal vase, and which, if you pick the petals, always end on “he loves me.” How to take care of Ned, because he takes care of all of us.

I think about how to reconnect with Max, tall, masculine indigo delphinium, strong, stunning to all. A favorite in the garden. Yet can’t grow everywhere. If happy, returns and stays forever. How to make sure he’s happy.

I think about how to nurture Ben, my rose, smells wonderful, must be pruned and fed just right to grow properly, who has so much sweetness dripping out in between his thorns. How to respond right to Ben when Ben corrects Nat for something Nat has said incorrectly, but uses a mean, sharp tone.

I think about how to be better to me, (not in terms of pampering myself, which I excel at) about not beating myself up or engaging in destructive behavior with others. How to let go when I need to, and hold on when I need to. I think maybe I’m an oriental lilly, which appear delicate but are actually very tough, grow in many kinds of places, can overwhelm with their scent and exotic looks.

We don’t belong to a synagogue, but we used to. That is how Nat and Max became educated in Judaism. I and a few other parents started a Special Needs Task Force, because prior to our joining there was nothing available for the education of kids with disabilities. We shamed them into doing the right thing. I kept referring to Moses, who had a speech problem. By the time we left, there were trained tutors for kids with autism there.

So why did I leave? The cantor broke my heart. When Nat was 12, with bar mitzvahs just around the corner, I found out that all the other kids in his class had already picked their bar mitzvah dates. All that was left for Nat was a Monday bar mitzvah. I wanted the whole nine yards: a Saturday morning bar mitzvah, in front of the whole congregation. I was told he would have to wait until next year, then. I felt so betrayed, we withdrew from the temple and we made our own bar mitzvah for Nat. We did it not to be “good Jews,” but because we wanted to show our world, our little circle of family and friends, all that Nat could do and that he was no tragedy. What better way than to have have him lead a ceremony that goes way back, thousands of years, just like so many other 13-year-olds before him? Not to mention how much fun it was to have a party in the Copley Plaza!

We are Jews without a temple. It’s not so terrible. What matters is what we believe, how we act, and what we do with our lives. That’s what I tell my boys.

I told Nat that this is a holiday where you think about being good and calm. Where you think about God, who is all around but you can’t see Him.

He said, “Yes.”

I tell them all, be the best you can possibly be, make the world a better place, starting here in our home. We celebrate the holidays in our own way, at home, with family or friends. It’s just that on Yom Kippur, I feel bereft without hearing the Kol Nidre, or the shofar blown. (So I looked up Kol Nidre on iTunes and listened there!) These ancient, strange sounds bring me chills and shock my senses so that I feel connected with the wandering tribes in Israel, way back when. The shofar is like a call across the centuries, binding together all of us in our belief that God is still with us, though sometimes difficult to sense. If you tune into what is good inside you and others, you will find it, I think. What I tell my sons is, God doesn’t care if you speak Hebrew to Him in one particular building or another, in Arabic, English, Farsi, or in Latin; He doesn’t care what kind of meat you eat, or whether you know a prayer or even how to talk; God is way above caring about whether you eat food on this day or not; a Being like God is all about goodness, and goodness alone. You know what that is, I know what that is. God is everything good that happens, in the world, between people, in your heart.

God, as Nat says, is “Yes.” (No, not that ‘7o’s band!)

Happy New Year, L’Shanah Tovah!

Sunday, October 1, 2006

What’s Your Story?

Yes, another blog post! Can you handle it?

Okay, let’s just say I’m working on a book that is about living well with autism. I need a sample chapter PDQ, so I am asking all of you autism parents to think about the worst thing that ever happened, the worst crisis ever concerning your autistic child — this could be how others treated him/her; a school system idiocy; a total meltdown; an embarrassing episode; a really annoying behavior. Now don’t worry, this is not a book that will denigrate autistics; it will be a book that illustrates the entire gorgeous and horrifying, boring and mundane, the spectrum of life, the panoply of being, whether autistic or neurotypical, and how to figure out happiness moment-by-moment living with an autismtinted family life. After you have described said crisis, briefly tell me, what did you do about it that resolved the problem? And, what did you do to make yourself feel better while it was happening?

Email me a little summary or leave a comment with contact info (email or phone). Then when I’m ready I may contact you for an interview and you will be one of the Voices of Experience in my new book.

And thank you very much.

What I Want for 44

I am working on a new proposal but other things keep going through my mind, so I thought I’d make a list. Here, so far, are a few things I want for my birthday (some only Ned can provide):
1) A gorgeous bellydance costume, accessories
or this one.
2) Tix to Eric Clapton
3) Tix to a Comedy Connection show
4) Dinner out: you gourmands, give me suggestions in the Boston area!
5) This treatment at Bliss Spa
6) Or this one
7) Night out drinking or desserting with a few compatible girlfriends
8) A fantastic cake
9) Real fire in one of my fireplaces — not a 3-hour log — huge chocolate bar, champagne
10) Gift card to Anthropologie

Give Me an Idea

I need a book idea!
I have an agent interested in something that I could write, but I’m not sure I feel it deep down in my heart, where my best stuff comes from. Same with my editor: she has given me an idea, but it is very research-y. Not me. I’m a bit of a Lazy Libra. (Note: birthday is October 18…) MPWA came right out of my heart/gut. That’s my favorite kind of writing. If I wanted to do research, I’d have my PhD by now (drat that Harvard; but see? they probably could tell that I’m a heart girl not a whatever girl). Anyway…
Here are some ideas I’ve had. Please don’t steal any of them!!!!!

1) Other parents who have made peace with autism — editor kind of liked but called it a “small” book. ouch.
2) Taking care of your child, taking care of you — living well with autism. Totally tips and strategies, illustrated with anecdotes, that I and others have come by for being our best even when life gets tough (even yesterday, a really bad day, I managed to cuddle with Ned after a nachos dinner and watch a nice movie with lots of kisses before and after, plus I did three laundries and changed the beds and got Max and Nat to vacuum. In between, I took a huge nap and felt really sorry for myself!) I’d have to interview lots of people, which is fine.
3) Things my sons have taught me — mother of three very different boys, none of whom are “mainstream,” maybe ten chapters, 3 per boy, one sum-up
4) Things autism has taught me — focus on Nat
5) Things others have asked me (at conferences and in email) about autism
6) Blog of a mad housewife — collection of my blog posts, some published, some not

Okay, please either rank them in order, favorite to least, tell me why, if possible, or give me a new idea. If someone provides me with an idea that I actually use, he/she will get a prize. Maybe your favorite candy or an autographed, personalized copy of my book? I don’t know what you’d like. My undying gratitude? Ned says I get a lot of hits on this blog, so I’m hoping it will help me now!

I am poised and ready. I really need an idea and I’m turning to all of you for help. Thanks! And again, if you steal any of these, you are an evil person. Don’t be evil, says, I and Google.

(Here I am, at Mom’s house, reading my final draft of MPWA, sigh)

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