Susan's Blog

Friday, June 15, 2007

Sometimes A Cigar is Just a Cigar

You can really drive yourself crazy wondering what’s what in people. Nat has been exhibiting fewer signs of anxiety overall in the past two weeks (he did fine when I was away in South Dakota last week). But Ned has noticed that the outbursts (growly howling and shouting and arm biting and obsessive questions) happen around dinner time. I don’t think it is that he is hungry; I think it is that dinner is too often chaotic in our house. Since getting his new job, (actually it was that they were acquired by Hewlett-Packard and then moved out of Cambridge, to the distant suburban Route 128 loop) Ned can never be home at a predictable time. He has to fight the Mass Pike, 128, and Route 9 traffic. His commute is easily 45 minutes. (My poor city boy. Ned, who grew up on Manhattan’s Upper West Side, didn’t even learn to drive until he was married to me, on a car that my dad thought of as his “dream car” when he first bought it, and then eventually sold to us for $1, a blue Honda Accord hatchback, which we called “The Kid” because of its license plate letters. Remember those wonderful Accord hatchbacks?)

So at around 5:30 Nat starts doing a loop from the living room into the kitchen, talking very fast with a little bit of kvetch in his voice. It does no good for me to ask him what’s wrong or to talk to him or offer a snack. He wants what he wants, but I am still not sure what it is, because even once Ned is home and we start eating, he is still not happy. Sometimes he works himself up into a crescendo of moaning and barking (and I do not say that pejoratively, it is simply the most apt description).

I feel bad that dinner is so unpleasant. I don’t know how to make it better, other than buying happy and fun desserts. What happens is that Ben gets quiet and finishes really quickly and runs away somewhere. Max waits to talk until our attention can come back to him, because we are so worried about Nat, so conversations are long and drawn out and difficult to maintain. And Ned and I cannot talk about anything other than things to try to get Nat to stop. Lately we try ignoring the shouts because sometimes that does make him stop, but it seems cruel because he seems miserable. I know, you have to be cruel to be kind, but I F***ing hate that concept. Anyway, I wish I knew who was more miserable, whose misery was more important to attend to of my three children, but I cannot see into their heads.

So Ned came home with his head hurting the other day, and he mentioned it as he was getting ready to sit down to dinner. I heard him say it but it didn’t even register, I was so preoccupied with Nat’s noise. At the moment Nat was perseverating on the salt and pepper, which was already out in front of him where he likes it, but somehow he needed to keep talking about it.

Suddenly Nat said, “Daddy will take Tylenol.”

We looked at him, and couldn’t help smiling and all the heaviness lifted off our faces like a good burst of Botox. Ned said, “Nat, that is a really good idea. I will take some Tylenol.”

“Daddy will take Tylenol.” This became the new autisto-mantra for the next few minutes.

I found myself thinking, I wonder if he says that because he really cares or is it because he simply knows that you take Tylenol when you have a headache, in a simple cause-and-effect way.

And then I thought, “Sometimes a cigar is just a cigar.” and laughing to myself, I began shoveling out the meatsauce (next to the pasta, because Max and Ben, allegedly NT, can’t stand to have it touching. Nat eats it normally, like us).

Thursday, June 14, 2007

Summertime Memories

Real Simple is a magazine that has grown on me. I used to call it “Real Nudgy,” but then my sister-in-law, who is Ned’s twin, and is someone I feel very close to even though I don’t see her much, got me a subscription. This made me give the mag a second look. It’s kind of hypnotic with its clean, glossy layouts; the photo spreads are so alluring that they make even housecleaning tips or office organizing look like something you kind of want to do.

They have a feature this month which asks, “What is your favorite summertime memory?” Readers submitted single paragraph descriptions of a moment in summer that was wonderful or a summertime practice they have loved, using powerful and sensory-oriented phrases, like “the smell of the rain when it feel on the pavement on a hot summer’s day,” or “riding my Schwinn bike, with floral banana seat, or course, in the 98-degree Iowa heat with a Popsicle melting so fast it dripped off my elbows.”

This delighted me. I began to think about some of my favorite summertime memories, childhood and adulthood. Here’s what I came up with:

Picking blackberries at Montauk Point, Long Island, with my sister, standing on a soft, narrow dune path filled with pale yellow-green pointy beach grasses. The ocean was just over the rise, so you could see it here and there through the grass (I was very small, probably six or seven.). The berries were tart and the seeds stuck in your teeth and filled your nose with their sharp, tangy aroma.

Waiting for my date to arrive for the Junior prom (I was a sophomore). He was a very nice young man with wavy black hair and a wide smile and his brother’s Astin sports car. I had the perfect dress: a pale pink Gunne Saxe dress (this one is satin, mine was cotton) with tiny flowers scattered across it. I went to the garden and picked a peony to put in my hair (very long, mid-back, wavy-curly dark brown) and an ant crawled out onto my face!

That’s all for now…off on a field trip with Benj to the beach, of all things (it is 60 degrees and cloudy).

Tuesday, June 12, 2007

Eight Things

I was tagged by Drama Mama, a reader who makes very kind comments and has quite a life herself! I’m supposed to tell you 8 things you might not know about me.

1) I want a fourth baby. I might want to adopt one with special needs. Why? Why not?
2) I adore bombshell fashion: cherry red lipstick, hot pink fingernails, high heels, short shorts, etc. I might go completely blonde one of these days.
3) I am highly attracted to Steve Jobs, Kevin Costner, and Bill Clinton.
4) I believe all women should wear bikinis on the beach, regardless of age, size, firmness, and color.
5) I believe no men should wear bikinis on the beach. The best thing on a man is long, colorful surfer shorts. I know, I know, they don’t have that little lining! So??? Live a little!
6) My favorite thing on earth to do is to write; my second favorite thing is going out at night; my third is staying at the beach beyond 4, when the sun is more mellow and lower in the sky and people have gone home.
7) I used to always fantasize about moving; since I’ve been in this house, I never do (seven years).
8) I wish I could find out what it really feels like to be someone else, to really get inside someone else’s head. How different would it be? Does red look the same to you as it does to me? Do flowers smell as sweet? Is sweet sweet to you? Or what I call stinky?

I tag SkiverDon, Tamsen, and Roy Goodwin.

Words of Wisdom

My friend R asked me and other people in her life to jot down a few “words of wisdom” for her daughter, who just graduated from high school. I was touched by this request, and I was also surprised by what I came up with, and then after reading it, not surprised at all. See what you think:

Most of what I know of you is from your mother, so I have been enjoying you grow up vicariously, which has been a double pleasure for me because I have no daughters. I think I would have enjoyed a daughter like you, although mothers and daughters are so intertwined that often it is tough for them to actually enjoy each other. I know this because I am a daughter, with a lovely, intense mother, who still has the power to irritate me and disappoint me at the age of 44! But the thing is, she is also one of the only ones who has the power to make me feel truly listened to and deeply adored. There is that emotional embrace that comes from a long conversation with your mother that no one else can give in that particular, intimate way. Maybe you don’t relate to what I’m saying at the moment. You have not been away from your mom long enough, perhaps. But in time, I think you’ll come to see what I mean.

I think that this “advice” can apply in the general sense as well: things are not what they seem, especially people (especially mothers). Take another look. When you think you know someone, look again. Never dismiss, unless you sense cruelty. You should never put up with cruelty, by the way. Know that you deserve the best, but not in a Princess sense; I mean you deserve the best treatment from others but for that you must give it to them as well. The trick is not to give yourself away too quickly. That is where your mother can help. She is a very centered person (and I am not saying she is perfect!). But she has a real solid understanding of herself, and therefore of others. She sees the good in people, while being able to discern their flaws. She does not dismiss them for their foibles, but rather, looks beyond them. And she laughs.

If there is anything I can convey to you about what I’ve learned in life it would be these things (of which I’ve probably told you too many by now!): 1) your mother’s voice can be one of your inner compasses, but not your only one; 2) you will have to learn how and what to shrug off, and what to keep, from others; and 3) look for people who make you laugh and who laugh at your jokes. It is those people with whom you are your truest self, and that is another path to happiness.

Good luck, I’ll be hearing about you in the years to come.

ps. 4) it is really okay if your husband is your best friend!

Monday, June 11, 2007

Taking Back the Night

Tabblo: Taking Back the Night

The clammy, leaden torpor of depression hung over me today.  But I did not succumb.  I listened to the music and the zills in my head and followed them.  By nighttime I was okay again. … See my Tabblo>

Sunday, June 10, 2007

Psyched and Psychic

I know that I said that a sunny day can be a burden sometimes, but that was yesterday. I woke up to crazy bright sunlight and was so glad. The first thing I thought was, “Bike ride!” Sunday is the best day to do a bike ride around here because there are some scary areas in some parts, like at Beacon Street by Boston College. There on a weekday you will find so many cars parked and as you ride by you are constantly afraid of being doored. And crossing over to Hammond Street is hard because their is no Walk sign where there should be. And then, of course, you have to cross Route 9, a crappy Interstate that runs East-West through Brookline, Boston, Newton, Natick, Wellesley, etc. and is just plain ugly congested nearly all the time.

But on Sundays, you get a break for the early part of the day. One of the lovely things about my bike ride is that at the halfway point (Route 9) there is a Starbucks. A favorite thing of mine to do is go with my friend R and end up there. We have our coffees, and then she rides home and I continue on. So I am hoping today she is free to do that.

Last night Ned and I went to a wine-tasting party which was the good kind of wine-tasting party: tons of wine, info about it if you wanted it, but nothing formal at all. Just drink and mingle. There was also a psychic from, who was telling us how we should try online psychic if we were looking for trusted physic and then he later went about reading palms as I pretty much expected he would.  After each person went, we would discuss what she had been told (very few men opted for the palm-reading). She got a remarkable number of astonishing details for each of us.

The first thing she said to me was, “Oh, you have psychic powers, too! You’re a healer of some sort. You travel? And help others?” And then she said, “You have three children and one of them is helping you write a book?” It was very cool. She told me I’d be going to California, New Mexico, and Arizona to give talks. I thought, “Hooray, those are totally fun places to go!” She said a pilot would have an impact on me; Ned made fun of that choice of words. She asked, “Who is Margaret?” and I told her she is Nat’s doctor. She said that Margaret (Bauman) has a lot of important information to share with me. I would say so. Margaret Bauman was central to my understanding of autism, and over the years she has become a friend and mentor. She also appeared on the Today Show with me. Margaret is one of the foremost autism experts, who first pinned down its neurological basis (and helped exonerate parents from their refrigerators). Everyone knows that you don’t put bananas — or mothers — in the refrigerator.

We actually got to bed at midnight. Nat and Max had waited up for us, sans incident. I am so relieved that Nat seems to be feeling better about everything these days. He asks several times to go over whatever facts he needs to hear, and then he drops it. “Daddy is waking up soon. Daddy is waking up soon.” And I tell him, “Yes, of course, Darling!” And he sits on the stairs, waiting patiently, and he keeps his anxiety to himself, the sweetie. There is not much I can do to make him less anxious, but he has learned how to control his behavior. He is incredible, he really does what he can, my Miniman. I believe he has a deep sense of intuition about the people in his life; talk about psychic. When he wants to, he can plug right into my mood and connect with me. Those who say that auties are in their own world and don’t care about others and don’t connect with others are saying far more about themselves than the auties they claim to understand.

Saturday, June 9, 2007

Sweets for the Sweets

And I had too much caffeine
And I was thinking ’bout myself
And there she was

Like double cherry pie
Yeah there she was

Like Disco Superfly…
–Sex and Candy, by Marcy Playground

Not much to do today, the weather is icky but my mood is not. I have to say, sometimes a sunny day is a gift, sometimes it is a burden, an obligation to do something worthwhile. And I no got. My chores are all done (thanks to Nat, there is never any laundry to do, he is such a laundry nudge, forces me to empty the hampers all the time and wash, dry, and fold, and put away immediately!! or else he will do it, and man, then you get some creative laundering going on! Also I weeded yesterday, the house is clean, and I just bought weekend groceries from the little market nearby which I love to do on the weekend because of the handsome young clerk that works only on Saturdays.) and so all I have to do is read my book, (The Birthdays by Heidi Pitlor, which is eh so far, two too many characters so they are not distinguishable enough, I hate that.) and make whatever meals. Prolly jes ‘make some meatballs and s’getti, a total crowd pleaser and easy, plus I got sausage! Sweet Italian, of course!

I figured it was a good day to bake, (we already made pancakes for breakfast, again, Nat gave me the idea because I had a dream that he came up to me and said, “I want to make pancakes,” so realistic! When I woke up I realized it had been a long time so why not? So as I started to get the bowl and stuff out, Nat came in, I looked at him meaningfully and he said, “I want to make some pancakes.” A dream come true!) and being so close to Neddy Sweets’ birthday, I decided to bake something he would especially like. Why wait until next weekend, when he’s expecting it?? Plus there’s Special Olympics State Games and Father’s Day. His birthday gets totally crowded out.

While he was at the pool, Benj suggested banana cream pie. So that’s what Nat and I did. Totally homemade cookie crust, (well, if you want to call mashed up graham crackers, butter, and sugar homemade) but totally instant (beat it from the box) pudding. Really, really creamy, suitably yellow, just rolls off your tongue down your throat. Very hard for a non-carbivore to resist.

Had a ton of coffee today — can you tell? — and also four different Atkins bars plus diabetic candy. My sweet tooth is up to 11 today. I should probably dance, it’s been a while. That’s a good way to get a high that is neither illegal nor fattening nor upset stomach inducing — at least not my own!

Sexy Flowers

I don’t know if you’ll see it the way I do, but here goes…I think Nature is quite the bawd!

Tabblo: Sexy Flowers

Friday, June 8, 2007

Sometimes Good Guys Do Win

This is a press release about my very close friend, Ruth Kaplan. I could not be more proud, and more optimistic now about education in Massachusetts!!!

Governor Makes Quality Appointment to Board of Education

Citizens for Public Schools would like to extend our congratulations and support to Governor Deval Patrick for his first appointment to the Massachusetts State Board of Education. He has chosen Ruth Kaplan, a member of the Brookline School Committee who supports public education, education reform and public school students.

In choosing Ms. Kaplan, Governor Patrick has found a supremely qualified, dedicated, thoughtful and open-minded activist to fill the parent representative slot on the Board.

As a longtime member of (Citizens for Public Schools) CPS (a broad based coalition that supports public schools) and co-founder of CPS’s Campaign for the Education of the Whole Child, Kaplan, a lawyer, has demonstrated great intelligence, compassion, courage in speaking out against the over reliance on standardized testing, attempts to privatize public education, and the marginalization of underserved English language learners, special education and urban students.

She has been a voice for quality and equitable education with great effect in her various roles as School Committee member, MASC board member, teacher, special education advocate and mother.

With this appointment, Governor Patrick is making good on his promise to bring together people of good will with diverse views and to bring on board qualified people who want to make a difference for those who have felt marginalized or excluded.

CPS is a coalition of more than fifty civic, religious, civil rights, education and labor organizations. It was formed in 1982 to support public schools in Massachusetts.

Marilyn Segal
Director, Citizens for Public Schools

Sue Falls For South Dakota

I just got back from a conference in Sioux Falls, South Dakota. I loved the place the moment I stepped off the plane; the air smelled sweet and dry, like heated rock. I had a flash of memory-feeling, of being there before, and smelling that big, dry, Western sky. We had gone to the western part of the state when I was little, to Badlands and Mount Rushmore (of North by Northwest fame).

I gave my usual talk, Making Peace with Autism or Extreme Parenting or What’s Autism Got to Do with it? and right after I was interviewed by KELO-TV for their six o’clock news program, and then right after that, I did a breakout session called “Helping Siblings Make Peace with Autism,” which was fairly new for me. I think they went well. I had a lot of attendees and a ton of questions during and after, which is what I think a workshop should be about.

At lunchtime I heard a couple talk about their sons, one of whom has autism, and the ups and downs. This was not a “poor us” kind of talk; the couple had a great rapport with each other and a wonderful, bouncy attitude. Their lives are not easy at all with 10 year-old Aaron, but it is obvious that they think the world of him, and that they are not afraid to be eccentric and creative in order to live a happy family life. I love it when I come across people like them.

I had a nine-hour trip home (maybe one of those hours doesn’t count because of the time change but tell that to my red eyes). I won’t say it was uneventful, in fact parts of my flight were downright scary and bizarre, but I don’t feel like going into it. Yes, can you believe I am declining to write about something that bothered me??

Nat and company did great while I was gone, probably due to a highly detailed calendar I drew up for him. He was all smiles as he read it, so I guess that’s the magic formula these days. Little B didn’t even seem to know I had left, and Rasta Boy seemed his happy-go-lucky self. Ned was in good spirits when I walked in at 11:30 pm. I am glad it is the weekend so we can really catch up now.

Feeling a bit wrung out even though I went running and weeded the garden. I am trying to get Ned an amazing birthday present (I have some already but this thing he really wants, I don’t know a whole lot about, or where to buy it. I can’t tell you because he might read the blog). It is his 45th birthday on June 16. I remember baking cookies for him when he turned 19, and shipping them to him in New York. He told me that they were the best cookies he had ever had, that they tasted like they had molasses in them (they were oatmeal, his favorite). So if you want to wish Ned a happy birthday on the 16th, do so, and don’t forget the cookies!

Tuesday, June 5, 2007

Not At All Dreadful

Give me a head with hair
Long beautiful hair
Shiny, gleaming, streaming

Flaxen, waxen.
–Hair, the most wonderful Broadway musical from the 60’s after Funny Girl

Yesterday I spent around four hours total (two before and two after dinner) putting dreadlocks into Max’s hair. We had found a great, informative site and researched how to segment, backcomb, twist, and wax the hair into bonafide dreads. This set of tasks was the result of a protracted conversation about this proposal, to further probe the outer limits of accepted hair style (he already has the fading remnants of a partial blue dye job).

Why did I let him, some may wonder. Because he wanted to, is the most simple response. Max has a very soft voice, both figuratively and metaphorically speaking; he does not put himself “out there,” unlike others in his family. Over the years, I have learned to pay close attention to his quiet expression of desires, feelings, and wants. Like his brother Nat, these moments come out when I least expect them, not as a result of a heart-to-heart or some well-thought-out plan; but rather, sitting side by side in the car while I concentrate on traffic. Or while I am in the middle of cooking two or three different dinners. Or blogging or coming up with a great kicker to an article. Nat’s and Max’s revealing moments are like the legendary green ray of light before sundown (referred to in an Eric Rohmer movie and Pirates 3); they happen in a flash, a heart-stopping gulp of time, and you are lucky to experience them at all.

It was not enough for Max to be 6′ 2″, drop-dead gorgeous, and have blue hair (now only slightly lavender pink in parts and bright blond in others). He wants to stand out even more. He wants this particular look, and who am I to say that it is not right? Not that it matters, but I think the short dreads look is kind of cute, whacky and innocent, somehow. A male happy-go-lucky Pippi Longstocking. Ned likened it to Sideshow Bob. Yes, but without the murderous tendencies, Thank God.

I would have drawn the line at tattoos, which are permanent and involve needles that may or may not be clean (I shudder at the thought of that, being a recovered OCD). Some piercings I would have also refused, but I am on thinner ground there. Each new idea he has about fashion, he brings to Ned and me and we talk about it for a while, over time. Some things we allow, some things, we don’t. One issue at a time.

While I worked, we talked and watched stuff on his Mac. We watched Steve Jobs introduce the iPhone at a conference. We talked technology (as users, not creators). We talked about Uru, hacking, calculators, funny television shows, and not-so-funny ones, like Lost and Heroes. He showed me some of Lost and I tried to get into it but that show freaks me out, I can’t help it. I just feel scared the whole time I’m watching, and who needs that?

I thought from time to time of the irony of never having had a little girl whose hair I could braid, etc., and here I was now, putting tiny little pigtails all over my very masculine son’s head. I thought about how I used to want to be a hair stylist, and how I would be good at it, I think. I liked holding onto his pink-blond locks, which were straight and soft and glossy like my favorite Barbie’s or Little Kiddle’s hair, and then teasing them into finger-sized dreads that then reminded me of toy Trolls’ (or Finks’) hair. The wax smelled good, like vanilla. Ned remarked as we were falling asleep, that I was like a vanilla candy bar.

I decided that what really mattered to me about this hair venture is that he keep the dreads clean and that he not actually be a “stoner,” though he may look like one to some. He will probably have to deal with people staring, or even treating him not so well. So this will be a learning experience for him, I suppose.

I did a furtive check of his email while he went upstairs to wash his hair with the special residue-free shampoo that prevents mildew(!) in the dreads. I felt horribly guilty but also intrigued. No signs of drug deals or being part of crime or porn rings. All he had was Uru stuff and facebook stuff. When he came downstairs I confessed to him, explaining it was my idea of a random drug check, and he forgave me, laughing softly.

Monday, June 4, 2007


We are here, we are here, we are here!
…A person’s a person, no matter how smallish.
Dr. Seuss, Horton Hears a Who

Ned and I managed to sneak out to dinner last night. We gave Nat his pills a little early to make sure he would be at his calmest, (per our doctor’s advice) and we talked to him about our plans all through dinner. We must have repeated the following conversation 20-30 times:

Nat: “Mommy and Daddy going out to dinner, come back at bedtime.”
Me: “That’s right, Nat, Mommy and Daddy are going out to dinner and we will be back by your bedtime.”
Nat: “Mommy and Daddy going out.”
Me: “Yes, Honey.”

Over and over. Finally I got so tired of this, and so annoyed, because it just didn’t seem to be sinking in or making him any calmer. In frustration, I flipped open my laptop and tried to block him out for a moment.

Nat suddenly said, “Listen.”

I looked up. He was staring right at me, those periwinkle blue eyes wide open.

He said it again. “Listen.”

My face was turning red, my heart, burning. “Yes, Nat, I’m listening.”

“Mommy and Daddy going out to dinner, come back at bedtime.”

“That’s right, Darling.”

He was fine last night.

Lest any of us forget, these children of ours who can’t always speak: they are here. 100%

Sunday, June 3, 2007

A Really Crappy Day

Slaughtered, gutted and heartbroken.
But things could be worse.

Today all I wanted to do is escape. I took two naps. I drank a ton of coffee, but no buzz was to be found. I ate all the carbs I felt like. I worked out for an hour. I busied myself with my presentations for my Sioux Falls conference this Thursday (I am going to Sioux Falls, South Dakota, Augustana College’s conference, to be their keynote.) I got Ben a favorite playdate. I made them good healthy lunches. I figured out how Max could see John Hodgman speak at the sold-out Brookline High School graduation. I got Nat a different version of Alice in Wonderland and he and Ben watched together.

I am making this list so that you will see that I am not an awful person. But I feel like an awful person. I had no joy today. No fun. No pleasure in the teaming life surrounding me. I am worried about Nat. He is still having growly tantrums just about every day. Out of the blue. Or sometimes not out of the blue, but because we simply cannot stick to routines he would like us to. The front door must stay closed at all times, even when it is sweltering out. No one should sleep past 6:30 a.m, especially on Saturday and Sunday. All laundries must be done and put away. All dishes out of the sink. Everyone must eat lunch at the same time. Mommy and Daddy cannot go out at night.

But I need to go out. I need to be alone with Ned. I feel like I’m in prison again. I don’t know how to help Nat feel better and I feel like I can’t leave. Ever. Even when I do, I hold my stupid cell phone in my sweaty hand and check, check, check, afraid that whoever is left at home with Nat is going to need my help. I am so worried about going away to South Dakota Wednesday night. Will Ned feel overwhelmed? Will Nat be unhappy and inconsolable? He got that way when I went to Town Meeting last week. Town Meeting only lasts like 4 hours.

What happens to other people who feel they can never leave their homes or their kids? What happens when it is only the husband and wife who feel they can manage their child? What do single parents do when it gets like this?

They end up feeling like they have to take two naps a day and eat themselves into oblivion. They look at their spouses and think about sex but it seems like a distant dream. They feel weighted down, leaden, gray, shriveled, cold, sour, finished.

Flush this day right down the toilet! Where’s my bed?

Friday, June 1, 2007

Ben is a Meme

A reader sent me this (thanks Mark!) and Ben, Max and I laughed our heads off! Max said, “OMG, Ben is a meme!” So now I know what a meme is.

The Best of All the Year

You have come at the best of all the year
–Timmy Willie to Johnny Town Mouse, as he arrived in June for a visit to the country

C’est juin!!!!!

What could be better? My wise older sister once called June “the Saturday of all the months.” She is right. June means so many great things:
1) The beginning of summer
2) My roses bloom
3) School ends
4) Ned’s birthday
5) Special Olympics State Games
6) Average temperature: 75
7) Many Cape Cod visits
8) Father’s Day
9) The evening air smells sweet
10) Happy Nat
11) Cook outs

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