Susan's Blog

Thursday, November 30, 2006

Sensuous Integration

Have you ever had an experience so rich that your senses are filled, and you feel it in colors, and tastes? I first experienced this when I was fourteen and listened to Yes’ And You And I. I remember putting my headphones on and blasting it, lying on my back on the floor in my bedroom. The music kept building and soaring, a rich chocolate rainbow in my ears. I would listen to it again and again. As I got older, I learned that Yes is thought of as kind of a silly histrionic druggie band and I hid my enjoyment of them. I moved onto other tastes. Only as a 40-something did I realize how I missed them and Ned bought me a CD. I popped it into my car stereo, which is better than my home stereo. When I heard the sugary, light green notes of Steve Howe’s guitar at the beginning, and then those thumps that then lead to the brighter green guitar strumming, I had chills.

It wasn’t until sophomore year of college that I had that feeling again; this time it was from Beethoven. The Pastoral Symphony. So rich, full of green and fuschia, bursting with flavor like jelly beans on my tongue, building and building and exploding hot and triumphant, like mid-June. I could not believe anything could be so beautiful. I became a Beethoven nut for a while, seeing him in concert as much as I could (the Philadelphia Orchestra was so affordable to college kids and newlyweds). Ned even bought me a bust of him, like Schroeder has on his piano. I still have it, sitting sternly on top of my defunct stereo. I still listen to him sometimes, the utterly sad but perfect second movement of the Seventh Symphony; the more spare Archduke Trio, elegant and simple as a single diamond. And of course, I still love the Pastoral.

And so I had that feeling again tonight, at my belly dance class. Standing there in a circle of women — all of us struggling to move our hips up and out in a figure eight, lifting from the waist and moving nothing but the hips in an even shape — with this Arabic music fluttering snakelike, breathy flute and visceral drums, I felt it. Just when I thought the music couldn’t get any more beautiful, they had this high-pitched squealy instrument, which sounded to me like a woman crying for love. My thigh muscles were quivering after a while so that I could not hold the position. My knee and hip were sending out all the wrong signals.

Yet I was supremely happy. My senses were drenched. The hard, dusty floor under my bare feet; the taut and burning muscles, the faint soapy sweat, the strange and foreign, heartbreaking music. The Christmaslike jingling of my white and gold hip scarf. My parched throat, imagining water. My teacher, her waist moving at an impossible, soft angle away from her hips, as if it were alive, (while she cracked jokes like, “Pop your hip up and look at it, like you are suprised and so happy to see it. ‘Oh, look! A hip!'” and later, “When you do this backbend, remember to turn your pelvis away from the audience.” ). She is a wonder, full of real joy that just radiates from her. She also said, “In belly dance, there are no wrong moves, it’s just that you want to be sure that the move you do is the one you set out to do!” She says it all with a laugh.

A lot of laughter in this class, and even more sweat. She worked me so hard, she made me do an entire left pivot with her (everything to the left is harder for me, we all have our more difficult sides). My face was glistening, dripping. But I loved it.

I can’t get over how this teacher can teach any move. She knows exactly how to break it down, muscle by muscle. Sometimes that helps, sometimes it makes it harder, though. Sometimes you just have to close your eyes and try it, how you think it would be, in your mind, and then you can get it. That’s what happened when I finally got the Hip Eight (a figure eight perpendicular to the floor). I had it, and I knew I had it. Lifting from the waist and everything.

I wanted to linger, but class was over. I made some jokes with the other ladies, then got in my car and immediately played — guess what — the CD from my teacher. Especially song number eight, a totally histrionic, violiny thing. The music rushes up in ruby and velvety brown tones, filling my ears and my heart. I opened the window as if it were summer.

It kind of was.

Moonlighting with Max

Here is my latest Brookline Tab column, about a high school variety show I attended with Max. How lovely to sit there with him and laugh at what he thought was funny… It all goes so fast…

Through My Glass, Darkly

I am just blown away by the people out there who connect with me. Way back when, W.C., (Without a Clue era), I felt so alone as a new mom. I felt like I was going through the motions, pretending to be a mom, smiling at my tiny boy Natty while inside, just wanting to cry all the time. Why was that? I still don’t know. Was it because he was not responding to me the way I needed him to? Was I post-partum depressed? Or was it because I was simply unhappy living in Yenemsveldt (which for me was Arlington Heights, MA, no offense to you Arlingtonians. It just was no Brookline, forshtays? I needed my ten different bagel bakeries, Kosher butchers, Mel’s Shooz, Linden Park, Cypress Field, Emerson Park, Devotion School Firetruck Playground, Chestnut Hill Mall, and all the other places to take my neurologically-challenged little boy. Instead, I had street after street full of ugly little Cape houses with vinyl sidings of dusty yellow, mint green, and beige. ) I used to sit there in the sandbox with Baby Delight and I would just talk and talk to him, regular voice, telling him how unhappy I was living there, how I had no friends except Merle, but she lived in Boston so I didn’t see her regularly, plus Quinn sometimes depressed me because he actually played with toys and was interested in Nat, who definitely was neither. I used to talk and talk to him about how much I loved him and how he deserved a better mom, one who was happy. I would recite my Pro’s and Con’s list out loud, about why we should move back to Brookline even if it meant taking a loss on our crappy little house and buying a condo. I would weep into the sandbox, hoping a Real Mother would not show up and shame me with her play expertise and her child who used a dumptruck correctly. How I hated “normal” moms who seemed to go around unconscious of anything except their wonderful, responsive child! Then suddenly they would be startled by the odd things Miniman did, like throw wood chips and watch them shimmer down on him, or stuff his mouth with sand or the shovel that I steadfastly brought with me.

If Nat’s toys could talk, what would they say: “Why are we so rejected by this boy? What the heck did we do to deserve such a boring existence? Could you believe it the other day when he put us in his mouth? What, do I look like ice cream to you? I sense a trip to the Salvation Army in my near future…”

Anyway… Where was I? Oh yeah, connecting with other parents. It finally happened, years later. I had to write a $#@ book for it to happen, however. Others find support so much more easily than I do. Sometimes I think I am as prickly as Ben. Maybe I give off a little, “F*** off,” air, when I really don’t mean to. What I really mean is, “F*** off if you’re going to hurt me, you Pr***.” Here is the depth of my pathetic history: I used to even feel alienated in certain autism support groups, for God’s sake, always comparing my kid secretly to the others, thinking thoughts like, “Jeez, so-and-so thinks he’s such a great dad because his kid responds to all that, what’s wrong with me/Nat?” or “Gosh, why doesn’t she get a clue?”

This was way back when. I no longer do that, (well, almost never! 🙂 because I feel so much more of a kinship with the other parents now. I feel like I paid my dues as a young mom. Nat is now 17, and there is very little worry left in my soul about where he is going with his life. I think all of my judgement and lack of connection with others was born out of my own fears and tremendous sense of inadequacy, which by now has shrunken to a bearable size.

For today, anyway.

Wednesday, November 29, 2006

Beware of Dogma

I just had an experience which only underscores what I have always believed E.N. (Era of Nat. Prior to Nat, I was W.C., Without a Clue). Beware of dogma. I am not referring to religious dogma; I am referring to life dogma.

I have come to understand that in this life, there are no hard-and-fast rules, except the obvious Ten Commandment sort (don’t kill, don’t make people suffer, particularly your parents, don’t order take-out when you have a perfectly wonderful husband menu at home, even when they offer free delivery, etc. ). While my pay-your-dues parents taught me that you had to follow certain prescribed tracks to get anywhere in life, they also taught me that I could do anything I set my mind to. When I was unhappy at college in my freshman year — (I went to Trinity in Hartford; what was I thinking? Only that it was pink and green, blonde and blue-eyed, so beautiful to behold, I must have thought: sign me up for one of those yummy preppy boys! Only to find that they were only interested in dating me at night, if you catch my drift. I was not at all like their Mummies, or their sisters named Muffy or SuSu, so there would be no bringing ethnic old me to the fraternity dance. I think I realized my mistake at last when one young man turned to me at a party and asked, “What does your father do?”
What does my father do? Hello? Why would a fellow 18-year-old want to know something boring like that?
“He’s a high school principal,” I answered. The boy turned back around and did not talk to me the rest of the party. Wrong answer, I guess. ) — I told Mom how sick I was of the loneliness and the snobby people. I wanted friends, a boyfriend, a group of boys and girls who go get pizza together and stay up all hours in their p.j.s discussing Marx. Why didn’t I have that?
“So transfer,” she said.
And I did. That spring vacation I took the train down to Penn and stayed in a high school friend’s dorm room. I looked at College Green, strewn with all types: hippies, princesses, frat boys, internationals. It was like a mini city. I fell in love. I wrote my essay on the train ride home and was accepted a few weeks later.

You don’t like something? Change it. You don’t know how? Find out. Many things are possible in this crazy and wonderful world of ours.

I learned E.N. that rigid beliefs in how the world works are your obstacles. Take the example of writing my book. I had no formal training as a writer. I am not a journalist by background. I am an essayist who has learned how to write what newspapers want (sometimes). I know what I want to write and I find a way to get a newspaper interested. Those are the only rules.

In autism there is a lot of dogma. A lot of people will believe that there is only one real way to teach a kid, and that if you don’t follow that to a T, you will not succeed. Some letters to the editor in yesterday’s Worcester Telegram made that point about me. This mom said that I did not try Nat on The Diet, so therefore I cannot say that it would not help him/cure him. True. I never gave The Diet a fullblown try. I did some of it. Nat’s behavior did not change. In my heart of hearts, I do not believe that it is his diet that is making him behave autistically. I think it is the way the nerve cells grow in his head, the particular deficits of serotonin, etc., that affect his ability to make connections about things he experiences. Maybe if I didn’t believe that so rigidly, I would see an improvement in Nat’s abilities through diet. Maybe. But I have to make choices and I can’t do everything that holds out remote possibilities. That is my own dogma, and it may be that it is a pitfall for Nat. But maybe it isn’t.

Worse dogma is the practitioners who can’t see the forest for the trees. One such therapist practically forced me to buy a DVD player for the therapy room so that Nat could take mini breaks watching DVDs. I told her, “He won’t want to do that. He likes to watch DVDs by himself, when he’s all finished. He doesn’t want minibreaks.” But she insisted that we get Nat to do this her way, that it would be so much better to have him watch a little and it would be a great opportunity for him to learn how to comment on what he sees on t.v.
“He won’t want to do that,” I said, hating to be a wet blanket, “He hates talking during a show.”
But she insisted we try it.

Of course it failed. Nat insisted that he “finish work” before watching anything. He used wonderful language, trying to force the therapist to take the DVD out and put it away! His favorite DVDs, too!

Other practitioners have insisted on one thing or another with Nat, simply because he is autistic and we all know autistic people all respond one way to certain things, right? Like the way some of them insist on visuals for Nat. He is not visual. He listens. He is a listener to noises. He memorizes songs, inflections. He gets distracted by the least little sound. If one more practitioner insists on Mayer-Johnson this or that for Nat …! He can read, for God’s sake. He doesn’t need a stick figure drawing of a bathroom, thank you very much!

But other kids do. So I would never say, “Oh, that visual stuff is crap.” It isn’t for some.

If Nat needs to learn flexibility and fluidity to get along in this world, so do the rest of us. It is only fair.

Please: Curb your Dogma!!

Tuesday, November 28, 2006

Good for the Cause, Bad for Me

My paperback is now available for order and will be shipped in two weeks. This should be cause for celebration, the fact that I made it to paperback. But I am very unhappy. I am stuck. I am not getting anywhere with new autism projects/articles. I feel I need to move on but I do not yet know how.

The Worcester Telegram did a piece on me to promote the new paperback. But — this is the least accurate article on me I’ve ever read. It is not factually incorrect, but the spirit is completely wrong. I even know the reporter, but obviously not well enough. The hook is wrong: I have and always will fight for Nat. Where did he get the idea that “Making Peace” means “giving up the fight?” The kicker is wrong, too, that half the time Nat does not know what we are talking about and that as he ages he is creating more problems for us. I do not feel that way. I believe that more and more he does know what we are talking about but only half the time does he show it. And as for creating more problems… all of my children “create” problems for me; it is their job. Nat is not special in that regard. His problems are a bit more evident at the time, however…

I am so depressed and this is the tip of the iceberg. There has been a slew of writing going on about autism and none of it is by me. I have submitted piece after piece to the NY Times, especially on the need for Late Intervention, and they went and assigned it to two other writers, and this is making the rounds in the blogosphere. It is a great article, better than mine, but that is beside the point. And today they are talking about buying toys for kids with autism; I wrote about that years ago in Exceptional Parent Magazine. And yesterday WBUR (Boston’s NPR affiliate) did a one hour program on autism in the later years. Two different friends called me to tell me, how wonderful!!! No one at that station remembered all the things I pitched to them, nor the commentary I did almost exactly a year ago?

I feel so irrelevant. Am I over? I know, I know, huge ego, but yeah, didn’t you already know that? Anyway… this is who I am, and right now, I am so bummed. Yes, sure, I am thrilled that autism is so central to the media these days! But as a writer, I’d like to be a part of that. And I’m not anymore. And it is not for lack of trying.

So if I’m to move on, I need to know what’s next. I don’t feel like I can do another autism book yet, because not enough has happened. And there has been a glitch with the Special Olympics book, as of yesterday. So I don’t know what’s next for me and I am in some kind of hellish stasis at the moment, churning my wheels, gnashing my teeth, wringing my hands.

Going to try to take care of myself. A trip to the gym, lunch with my best girlfriend (I hope) and then — work on my newest project, which I may be calling, “Making Peace with Midlife.”

Sunday, November 26, 2006

Good and Bad

Where my thoughts escaping
Where my music’s playing
Where my love lies waiting
Silently for me.
–Simon & Garfunkel, Homeward Bound

I’m home. Here’s what is good about today, and here’s what is bad about today.

1) Good: My own bed is just right. Bad: I didn’t sleep long enough. Good: Neither did Ned

2) Good: My email is fixed. Bad: I hardly got any email once it was fixed

3) Good: I had a great workout, steam, and shower. Bad: My hair came out terrible

4) Good: I got to take a long nap. Bad: When I woke up, my eyes looked really funny

5) Good: I had Cheesecake Factory salad leftover from last night. Bad: The chicken was bouncy.

6) Good: All five of us took a long walk to buy coffee and books. Bad: Nat was a pain over the water bottle (wanted to drink all of it and piss off Ben); Ben groused the entire time. Good: Enjoyed a good steamed cream latte; Max and Ben got the books they wanted; Nat nuzzled my hair in the bookstore.

7) Good: I have an idea of what to make for dinner. Bad: I’m making meatballs for dinner

8) Good: I will belly dance tonight. Bad: No one here cares

9) Good: The Simpsons tonight, I hope. Bad: It is often a repeat

10) Good: Tomorrow is supposed to be sunny and hot (60 degrees) again. Bad: Global warming

Saturday, November 25, 2006

A Glass of Whine

Boredom’s in my blood
It makes me whine
It makes me bitter
Stinks like feet
Oh I could write a case of crap
Still I’d be on my seat, I would still be on my seat…
–Joni Mitchell, “Case of Crap”

My email is not being delivered!!!! I can’t stand it. It is like Precious is constipated. She keeps letting me down. I need my computer to yield up her delights to me. I am so bored. I can’t eat for fun, I ate so much for two days I fear fatness. It will creep up on me, lumping over my jeans waistband or softening up my jawline.

I also have not been reading, because my attention span is shot. Nor have I been writing, except reject after reject column. I think when I get home I will start seriously thinking about my Special Olympics book and map out a strategy for writing it. It’s going to have to involve Kennedys, which is fun but complicated.

I also have to think about how to get more speaking gigs. I love traveling to new places on my own as long as I can come back to my loved ones the next day, filled with stories and new experiences to keep me going during the dry spells of boredom (like now).

I can’t shop. I did some shopping, but not enough because money is tight. All I want is belly dance costumes and music. Also, gorgeous velvety and lacy things from Anthropologie, and some parties to wear them to. (I don’t want to have to throw a party, because I get too stressed over everyone having fun. There has never been a party I’ve thrown where I did not want to cancel it that day. I get pre-party regret.) I did go to Anthropologie, and that store is always like walking into a Prozac dream, my dream of a perfect store. (I occasionally have had dreams of a city that is kind of like Paris mixed with Philadelphia, which to me is a good thing; I love Philadelphia, it is one of our national treasures. It is an inexpensive but funky, cool, easily understood city. It is where I fell in love. It was the first city that was really mine. The city in my dreams has these wonderful Parisian/Philadelphian neighborhoods and vintage clothing shops, but an incredibly difficult-to-understand subway system, where you could almost die getting onto the train. There is also a very dangerous neighborhood just a few blocks away, with killers and rapists, and sometimes I end up there by mistake. I wake up just when I’m like surrounded by evil men. Other times there is this area with lots of big department stores, too big to get to everything. But again, the stores are phenomenal, rows and rows of interesting sweaters and shoes.)

But back here on earth, in Boringville, Nudgeticut where I grew up…
I just gave everyone lunch and I’m waiting for Ned to finish eating his turkey sandwich; he is very easy to please, easy to cook for. Just put lettuce or bacon on something and he thinks it is special. He has simple pleasures that are often easy and fun to satisfy. I have a much longer list of wants than Ned. Well, opposites attract.

Okay, this blogpost is going nowhere but like I said I have nothing to do and I want to leave!
Make suggestions to me about what I should write about. But be nice; I have no patience for mean anonymous crap, okay?

Friday, November 24, 2006

Talking Turkey

Saddest sight I’ve ever seen: The Beast sobbing because his cousin Kimmie left. Never, ever saw that before! He actually sat on my lap to be comforted. (I must admit I enjoyed the comforting. With these children, I don’t get to be that kind of Mommy enough!!!) The only thing I could do was stroke his silky hair and let his tears fall on my arms. And then I offered to take him to the video store, so off we went, also with Nat. Ben rented GoodBurger, which is stupid but funny, and Nat got Mickey Mouse Fancy Free (don’t ask, it is pure Disney Drivel, although, really, thank God for Disney; they somehow manage to capture a good deal of the autistic child population’s interest, and it is nice to find something we can all watch together, even if it puts me in a diabetic coma).

The Food.
Anyway, we all had such a good time. Of course, the food was wonderful. John, Laura’s husband, makes a sweet potato-squash-carmelized onion soup that tastes like baby oatmeal, which to me is a wondrous thing. Gerber baby oatmeal is one of the best tasting things in the world. I had two bowls, and then, I was full! Oh jeez, I was going to eat and eat and there I was, full before the turkey even came out of the oven! Still, I managed. I ate Mom’s chunky cranberry sauce (real cranberries, strawberries, pineapple, and walnuts) and sweet potatoes, and Nat’s cornbread, turkey, and some wild rice stuffing which was not my favorite. I have a stuffing recipe from Silver Palate Good Times which is made of cornbread, white bread, and French bread, and apples, and breakfast sausage!!! I should have made that. But then, I would have wanted to eat it today, which is a no-no. I already ate pie [recipes in this cookbook] with Ned, and leftover chocolate turkey, (see Dad ogling very same) so I was bad today.

The Company.
My cousins came by for hors d’oeuvres, with their kids, and it was really fun seeing all of them. This picture is of us with our cousin Karyn. My aunt and uncle from Mom’s side of the family came the next day (today) with my cousin Jessica and her twin babies. Oh God, they are cute. They are 18 months old. They run around and are like plump candy on legs. They laugh at water splashing. They are so sweet I can’t believe it! Made me want a baby. Of course. I told Ned and he just laughed.

But the most fun part was Laura. I really enjoyed gabbing with her, as always. She was making jokes that were even making Max laugh, and that is tough.

It has been great hanging with Mom and Dad. I went upstairs at one point to do some belly dancing in my old bedroom, and so first Mom came in and she watched me do my choreographed Misirlou. She was very taken with it, the music and my technique. I was thrilled to perform for someone new who actually enjoyed watching! And then Laura came in and I repeated it. I felt very confident because I knew they would like it, so I did better than usual when Ned is watching. I guess I feel a little insecure that he won’t like it, even though that’s probably not fair. Mom and Laura are just easier to read.

The Date.
Going out with Ned tonight to some groovy restaurant around here, probably Thai. I’m sure that will be great; as much as I love being here, I also need my connecting time with N.S. Isn’t he the cutest thing?

Thursday, November 23, 2006

In My Head

Once, years ago, Benji said suddenly, “What’s in my head, what’s in my head?” And he rushed out of the room to find a pad and draw! Here is a Tabblo Ned did of the Littlest Boy drawing, using pics from four years ago.

And now, I give you what is in my head, and elsewhere…

1) In my head: Excitement at the prospect of seeing Mom, Dad, and Laura.
2) In my heart: Happiness knowing that both Mom and Dad have plenty for Nat to do — I told him this and he smiled.
3) In my car CD changer: Melina’s dance mix, esp. this song
4) In my belly: Hunger for pie and bread
5) In my dream: An invitation to a grand dinner in a castle-like home, and then the worry that I would have to reciprocate
6) In my imagination: The Special Olympics book that needs to be written
7) In my navel: A simple barbell piercing, healing nicely
8) In my suitcase: A red skirt from Anthropologie that is almost exactly like my favorite one in nursery school.
9) In my gastank: Plenty of 89 octane fuel for the Amazon
10) In my inbox: Lots of fun emails, and lots of spam
11) In my State House: An outgoing, horrible Governor who just used his 9C powers to cut millions from the budget, including slashing help to stop homelessness and support services for the developmentally disabled and the mentally ill. Nice. Calls himself a man of God.
12) In my other second floor bedrooms: three slumbering beautiful boys.
13) In my bed: Ned, the kindest, calmest and wisest person I have ever known.

Wednesday, November 22, 2006


[I cannot find the old limericks that I removed due to criticism so I will make NEW ONES up as best as (asbestos) I can. Here are my pies! Photo by Neddy the Sweet]

Silliness and 3.14

There once was an anonymous gent
Whose emails were of a sexy bent
Each email I’d get
Put me in such a sweat
That I found him to be heaven-sent

There once was a reader from L.A.
Who only had flattering things to say
His hot comments on my blog
Made me go so a -gog
That I’d share them with Ned right away.

There, too, was a reader from Brookline
Who seems to like me just fine
I am curious to know
If he is so-and-so
Does he live near the C or D line?

There once was a house big and old
Susan saw a castle through its mold
She convinced Ned to buy
Though the price was sky-high
After seven years he still isn’t sold. (thanks Ned!)

There once was a woman who baked good pie
She made it with corn meal, and this is why
The crust was so sweet
Made the pie exquis-ite
And it made her spouse fall to his knees and cry

The aroma of pie-bake fills the house
So good a smell not even Ben will grouse
there’s blueberry, there’s squash
They’ll make such a good nosh
I need to protect them from that wily mouse!

An autism mom learned how to belly dance
She loved how the music put her in a trance
She practiced so hod
To shake well her bod
But all that occurred were wellfitting pants

There once was a software geek Ned
Who had numbers and shapes in his head
But he met up with Sue
Who showed him what to do
And if I told you more my face would be red!

There once was a crabby boy Ben
Who liked Legos and things of that ken
He’d build and he’d build
Until he had his fill(d)
Then break ’em apart, and begin again.

There was a young autist named Nat
Who acted as skittish as a cat
He’s pace and he’d stim
Looking graceful of limb
Even Resperdal could not make him fat

Oh Max you are last, but you are not least
You are off somewhere wearing clothes a-creased
You’re lovely, you’re kind
You have your Dad’s mind
I think life for you will be quite a feast.

Speaking of feast, T-day is near
With turkey, pies, and family dear
We’ll drive to my folks’
We’ll tell some bad jokes
With love we all find there is nought to fear.


Here’s a list of strange things I am grateful for.

1) I’m living with a supermodel — and it ain’t me. I’m getting older, and so are my children. This morning, for example, I walked, in a pre-coffee stupor, down the hall to Max’s room to wake him up, and the door opens, and out walks this Greek god. Way tall, long torso perfectly ripped, deep voice. Who is that? Oh my God, it’s MAX!!!!! How did this beautiful person get to be a part of my life?

2) Last night, Benji really let it rip about Nat. Right at the dinner table. Talking about how he wished Nat would go off to college where he would fail all of his tests because he still doesn’t even know the Alphabet!!! It gave us all an opportunity to talk about angry feelings and different abilities and how hard this can be for both Ben and Nat. Not at all sure if I totally blew it or got through. But my heart hurts for that little guy of mine, so honest in his emotions, so obviously struggling to understand it all. I love the fact that we actually had a real conversation, at last, all of us, about autism and what it implies for this family — even if I failed to turn it into the positive thing I feel.

3) Nat seems to be talking less and less. We discontinued the Home Program because it was too rigid and I felt bad for him. He needs people who know how to connect with him and who will drop all their preconceived notions of what should happen and instead work WITH him to build on his skills. I am grateful to understand this and that I may have convinced my town liaison to consider a new Home Program in conjunction with Nat’s school — provided we can demonstrate that this is a concrete need of Nat’s. I understand having to jump through this hoop because she is a good person but she is still an administrator and she needs to prove a need. If we can prove the need for a Home Program beyond Nat’s school day to help him generalize his schoolday skills — and I have no doubt our data will bear this out — we will have a wonderful, albeit small program and help Nat have a shot at independence.

4) Ned and I had a huge fight last night. I did a dance for him, in full costume, fully choreographed (I did the choreography myself). He said he liked it, but then he also criticized how I held my hands in a particular move. He also said he did not really like the belly moves — as opposed to how he did like the hip moves. I felt so hurt, so angry, I went way over the top. I slept downstairs for a little while, and refused to talk to him — except for flinging really mean, knifelike barbs at him. I think he really gets it now, what I need from him in terms of my dancing. I woke up and found him downstairs at his computer and I crawled right into his lap for a nice toasty hug.

5) I will be baking two kinds of pie that we like best. Martha Stewart’s honey-acorn squash pie with cornmeal crust and James McNair’s blueberry with cornmeal crust. I will eat pie tomorrow, you can be sure. Natty will make the cornbread and John, Laura’s husband, will be bringing squash soup that is out of this world.

6) Dad has plenty of work for Nat: picking up twigs and loading wood in the “wooder.” Mom maybe will watch my new belly dance routine. She is probably a little uptight about tomorrow but she will be so happy that we’re all there, she will be like wet sugar all over the place.

7) Laura. I can’t wait to see her and talk about all our latest stuff.

8) Laura’s kids. They are little and intense, like her and my kids adore them.

9) Ned’s dad. He is an incredibly strong and sweet human being and one of the quietest people I know! He is taking good care of Ned’s stepmom, who has been sick but is doing a lot better — she says we will still be having Christmas there!! After having been in the hospital twice in the last month. He is an inspiration to me, of commitment and love.

10) I am grateful for my family and my friends and my readers — even the anonymous ones, maybe especially them! (the nice ones). I hope you all have plenty to be grateful for, too.
Love, me

Monday, November 20, 2006

La Danse En Rose

Tabblo: La Danse En Rose

Hey Grandma, updated

[Note: to learn more about my wonderful and oh-so-Taurus late and great Grandma, get it firsthand, in my dad’s book, Catskill Summers]

I came across the following in my old documents file. I thought of Grandma, and there it was. It is almost five years to the day that I wrote this, about my larger-than-life paternal grandmother, Esther Senator Gross, a year before she died. I have edited it a tad and I give it to you, in her honor…

My grandmother is not doing too well. She’s been falling a lot lately. I can’t help but picture the hand of God kind of nudging her down, shaking out the last bits of life in her, helping her get on with it. She’s 93. But every time, she recovers, a little smaller than before, but still herself. But still.

And so these days I find bits of her life floating over to me, the bits that intertwined with my life. The thing is, Grandma has always been a real character. She’s a bit difficult to get along with, argumentative, impulsive, moody, but passionate about those she loves, fiercely loyal, and unafraid to speak her mind. She has always been a real person to me, not some pedestal-perfect grandmother who bakes cookies — though she used to bake: three different cakes at a time when I would visit her in Florida, draped in dishtowels, standing on the table. “Aren’t you going to have a piece of cake? What are you, on a diet?” She and I have had a real relationship, with committment, love, anger, and understanding. I cannot bear that she is leaving me.

I see her chubby hand reaching into her huge white leather purse, rooting around for something for me. I’m five or six. She pulls out a huge pink foil-covered flat circle of chocolate, which I unpeel and eat immediately. Then she stuffs five dollars into my hand, which I dutifully hand over to Mom or Dad. The chocolate was the thing, not the money.

Later, she pulls me onto her lap to kiss me like a hundred times, and tells me “Never go with strangers. You hear?” Yes, yes, of course I won’t! I’ve read Betsy and Bill and the Nice Bad Man. Seargent Shean spoke to our whole school. I know all about that stuff. Yet, she tells me every single time she sees me, which back then was a lot.

My sister and I slept at her apartment only once, a long, hot night in a Brooklyn apartment, in an uncomfortable sofa bed. No toys except two bottle openers with walnuts hulls with faces glued on and yarn hair. It didn’t matter; we played with those things for hours. She had a lot of china figurines, which I found you were not supposed to play with because they broke. There was a visit I remember where I think I broke at least three different things, and she kept yelling at me, while my Dad just laughed (for he did the same thing when he was a boy). Because he laughed I knew I was not really in trouble; in fact, I never was, with her even though she yelled at me a lot all my life.

Although we stayed with her in Brooklyn only once, we stayed with her in “the country” often. This was her bungalow in the Catskills. It was a little boring being there with only my sister, who liked different things than me, like pinball and board games, rather than dolls and pretend games, but we amused ourselves with the pool and swingset nearby. I was always told to be careful in the pool; that somebody had drowned horribly there by sticking her head in the pool bars that divided shallow end from deep. Why would someone do that, I wondered to my sister. I was also told not to swing (!) But I did anyway. One time my cut-off shorts got stuck in the swing and when I jumped off I was left hanging by the swing, with Laura laughing her head off. If Grandma had seen this, she would have yelled so much, but luckily she didn’t know.

I remember hating her food. The cakes were old world style, babkes, mushy apple, no chocolate kinds, no frosting. Once she cooked me a “minute steak,” which tasted like a stick, and canned vegetables, and expected me to eat everything. She made me chocolate milk, really brown, which I loved, so I kept asking for more, but then she scolded me for drinking too much milk. My sister and I just looked at each other, mystified.

As we got older, and the grandparents all moved to Florida, I remember that it was easier to stay with my other grandmother, who left me to my own devices more, and spoiled me with the most delicious food, new clothes, and lots of easy conversation — but that’s another story altogether. We would visit Grandma, and once, when we got ready to leave to go back to my other grandmother, she said in a snit, “What’s she got, the Brooklyn Bridge over there?” Once it got so hard for me to stay with her, because of all the nagging, that I “escaped” to my other grandmother’s, and stayed there the rest of the time. But Grandma was merely puzzled by my move, not angry. Maybe she knew she got on my nerves. She accepted that in me. She once said I was “ornery.” I hated when I displeased her, because I was so used to basking in her love. She did not like when I got too thin or plucked my eyebrows; she said I looked like a “Shiksa.” She had a strange expression on her face, though, like she half admired my ability to achieve this look.

Things have not changed all that much. She always wanted me to name one of my children after Joe, her second, odd (probably Aspie) husband, but I did not. Nat was born the day Joe died, so she feels a special sad connection with Nat. She has never accepted the fact that Nat has a disability, only views him as “a little slow,” which drives me crazy: “He’s not slow Grandma! He has a problem with language, socializing, school work…” What does it matter? To her that’s being a little slow. She always asks,”How is he, is he talking more?”
And I reply, with honesty, “Yes, he is,” because he is always improving.
Then she says, “How about the other one? He’s so handsome.” And then, “How’s the baby? He’s cute.” Benji is now three, but still the baby. She can’t keep track so well anymore of all the other great-grandchildren but I always feel like she keeps track of mine, especially Max and Nat, whom she knows so well.

Every year we visit her in Florida, take her out to dinner. Once I took her to the Rainforest Cafe. She’d just been in the hospital. My dad had warned me to take her someplace easy, because she could not walk so well, but I wanted to do something fun for all of us. When I got to the restaurant, it looked like it was ten miles from the curb where Ned dropped us off. I thought, “Oh, Dad is going to kill me.” But Grandma charged ahead with her walker, found a shopping cart, and pushed her way through the mall until we got to the restaurant! When I took a look at all of the auto-animatronic animals there, I thought, “Oh, Dad is going to kill me. This is too much for her!” But Grandma liked the place, liked the fun of it. She took one look at the menu and passed it to me, saying, “I don’t want to eat nothing.” Then, “see if there’s a little pizza there.” So we got her a kid’s pizza, and she liked it, without sending anything back or yelling at the waiter. She even ate dessert.

Well, I’m heading down there by myself m
id-March. She’s in the hospital again, a little disoriented I hear. I sent her a letter and in all caps I wrote, “I’m coming on March 16!” My way of saying, “Hey Grandma. Hang in there! I can’t imagine the world without you so please, don’t die!”

We’ll see if she listens to me.

The March visit was the last time I would ever see Grandma alive.

Saturday, November 18, 2006

Nat-ural Curiosity

What is your life like?
Is it good to be you?
Is good the absence of pain,
or is good better than anything I know?

What do you dream about,
If you don’t have words
Do you see pictures,
flowing together, or discretely
or just feel feelings
but what is that like for you?

Do you want to be left alone
or am I supposed to gently force togetherness
until you really want it
or until you are used to it?

Have I done it right?
Have I loved you right?
Is there something you would want if
you could tell me?
I’d do it, you know
I think you know.

I think I know
when I see you smile secretly
talking quietly to yourself
your own jokes
your own language
the way you wait up for me when I’m late
and let me kiss your softly bearded face
child man
mini man
boy of my heart
child of my dreams

30 Least Favorites of the Moment

Readers: I’ve shown you mine, now you show me yours!
30 Least Favorites of the Moment:
1) color: beige (what is it? a brown that can’t commit? a dirty yellow?)
2) soft drink: Diet Pepsi (I’m a strictly lime Diet Coke girl)
3) jewelry: brooches (it’s just stuck on your blouse like a button; why not wear a necklace and show off your neck or cleavage? )
4) body part: feet (except Ned’s, which are beautiful)
5) hair color: red
6) instrument: clarinet
7) flower: marigold (stubby and cheese colored)
8) candy: Skittles (look deceptively like M&Ms; but then — eek! fruit!)
9) band: Styx (the lead singer sounds like he swallowed helium)
10) song: Where Have All the Cowboys Gone? Paula Cole (“Yippee -i, yippee-ay!” I get shivers of annoyance when I hear it)
11) toy: Cabbage Patch Kids (hideous)
12) book: Penelope Leach’s Your Baby and Child. (Read it as a first-time mom and it did not match my reality in the least. Tore it in half and threw it across the room.)
13) decade: The 1950’s (June and Ward, pointy bras, crinolines, conservative politics, buzz cut men, a woman’s place was in the home. Snore.)
14) meal: dinner
15) weather: rain
16) old t.v. show: Beverly Hillbillies (just plain stu-pid)
17) new t.v. show: E.R. (so much tsuris. Ever sit in a real Emergency Room? Dull as dishwater.)
18) school year: seventh grade (I had no friends in my class and a mean anti-semite in there)
19) boy’s name: Dick (come on, people!)
20) girl’s name: Nancy
21) outfit: sweatpants and sweatshirt and sneakers
22) store: Brookstone (totally boring — gadgets only)
23) holiday: Yom Kippur (fasting, I don’t do it, guilt)
24) smell: cigarette breath
25) chore: dusting
26) dream: the one about the tidal wave coming up the beach
27) birthday: turning seven, I cried the whole party (I don’t remember why except that Dad wasn’t there?)
28) sport: basketball
29) game: Chinese checkers (sorry Ben!)
30) curable illness: strep (so uncomfortable)

Friday, November 17, 2006

November, No Problem

Old friends
Sat on the park bench like book ends.
–Simon and Garfunkel

Last night the wind and the rain were so strong that we did not sleep well. I got up several times, from the noise and to check on Beastie, who was coughing in his sleep, a little boy cough (even his cough is cute!). This morning, the remaining leaves have been stripped from the trees and all is wet and gray. My front lawn is like a sheet of hammered copper, with layers of crisp, flat brown oak leaves. Two red cardinals sat on the bare dogwood outside my dining room window; I have not seen them since the winter.

And yet I woke up clear-minded and happy. It’s definitely November, but somehow I’m together today. Not sure how or why. Maybe because I am going to have lunch with a friend from a long time ago, a spiritual connection that I severed because it was too intense for me (that’s right, I said that she was too intense for me! Can you believe that? But it happens. Even I can’t always look under the scab or the rock. Sometimes a cigar is just a cigar, you know what I mean?) Anyway, she was a friend to me pre- and post-diagnosis, she was with me during my craziest times, she inspired the plot to my third novel, The Scent of Violets, she got me my first massage, and she bought me a deck of Tarot cards and a book on Tarot so that I could learn to read them. And I did use them for a long time, the last question being, “Should I have a third baby?” And the answer was, “Yes.”

I read the cards the other day and had a very confused reading.

But I am really looking forward to seeing her because I am ready for that connection, and I am ready for some spiritual work. I keep getting stuck on one particularly thorny issue and I’m not sure how to handle it. Other than going to the gym, or belly dancing, lying curled up in Ned’s arms. Actually, those things work pretty well.

The thought of seeing my Intense Old Friend this afternoon, however, is a comfort on this November day, like a cup of real hot chocolate (made with Droste cocoa, milk, and sugar, if I were allowed to drink such a wonderous thing on this diet of mine). It makes me feel strong and able to be centered. Seeing her gives me permission to indulge my flaky side and to wonder, and move beyond whatever may be miring me in the November mud.

Thursday, November 16, 2006

On My Mind

Perhaps it’s the color of the sun cut flat and covering
the crossroads I’m standing at
Maybe it’s the weather
Or something like that
But Daddy, you’ve been on my mind.

–Bob Dylan and Joan Baez

Readers: this is only what I am wondering about, what’s on my mind. Don’t feel compelled to answer, but you know I love your comments anyway! Nothing nasty, please…

1) What’s on your mind
2) When will H n H write me again
3) Is SA from B someone I know
4) Do I wear people out?
5) Will Natty be independent someday?
6) Will Nat’s brothers give a shit about him someday?
7) Should I be forcing Max to do a sport or something extracurricular after school?
8) Why do I need so much attention?
9) Why can’t I decide one thing and stick to it?
10) How will I get the courage to bare my stomach when I dance in class with a bunch of young girls?
11) How can I have more fun?

Sex Offender Label

Here is something I have written about before, which I redid for the Huffington Post. You can read it here. I am very sad about this issue. I understand how horrible a sex offense is, I really do, but I think that our system can really backfire and other lives are ruined as well.

Nat’s Seventeenth

Tabblo: Nat's Seventeenth

Wednesday, November 15, 2006

Fresh From the World

Morning has broken
Like the first morning
Blackbird has spoken
Life the first bird
Praise for the singing
Praise for the morning
Praise for them springing
Fresh from the world.
–Cat Stevens, Morning Has Broken

Seventeen years ago today I also slept badly. I had a much better reason back then: it was my third day of early labor with Nat. A few times every hour I would feel a big sqeeze in my middle and some mild pain and then a foot under my rib. I would laugh about the foot.

Nat’s labor became more intense but did not progress very well because this was my first baby. So by the third day (November 15) I did what any suffering young woman would do: I called my mommy! I said, “Mom, I still did not sleep and I am SO tired and I’m afraid I won’t have any energy left to push out this baby!” I was panicking.

I did not know if I was having a boy or a girl. I figured it would be a girl, since I only knew of girl experiences. Even though I had had a dream where I saw a laughing blond toddler boy in my sister’s bedroom at my parent’s house, I still thought, “Oh, it’s a girl, and I’ll name her Melissa!” I even listened to the Allman Brothers’ Melissa, over and over. Laura made me a labor cassette of that song and all my favorites, to use while laboring. I did not remember to bring it but I loved listening to it. It had Genesis’ Follow You, Follow Me, the Allman’s Melissa, and others I cannot now remember but will forever associate those two songs with Nat coming into the world.

On the phone that morning, Mom said, in typical no-nonsense fashion, “Tell your doctor to get the show on the road.”
I called the doc and he said, “Okay, let’s have a baby.”

I went in and was set up almost immediately on the monitor and the pitocin drip. The pains got intense pretty quickly so they came in and gave me an epidural, which, it turns out, was too strong so I could not feel the urge to push.

Nevertheless, from about 4:30-7:30 pm, I did my best, with the doctor saying, “Come on, before my shift ends!”

It was taking a long time. I think the baby was under distress for a little bit of it. They took blood out of the crowning baby’s scalp and the doctor did not even wait for the elevator to go to the lab; he took the stairs. My mother, who was right outside with Dad, panicked and thought, “Susan’s dead!”

I was not dead but I wanted to be. Suddenly the epidural was taken off and there were the pains, loud and clear. I remember feeling like I was being split in two. In some ways, I was. The old me was dying and the new me was being born: Me as Nat’s mother.

I yelled, “Cut It out of me!”

They did not.

Ned was on one leg, my sister Laura was on the other. They kept cheering me on. Finally I pushed like I was being ripped inside out and out came Nat.

I don’t know what his apgars were. I don’t know who was doing what to him, cleaning him and so forth. I just wanted him, my long-awaited son, and I wanted him with a hunger I had never known. I was ecstatic holding him. I could not get over it. This beautiful, perfect pink baby was MINE.

Here we are, raw new parents.

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