Susan's Blog

Friday, June 29, 2007

Food But No Thought

Summer’s here
and I’m for that.
–James Taylor

I was walking the Res with my friend L today and we discussed how rotten Atkins has made us feel. Yes, we were at pretty good weights, but we felt like sh**. Nightly upset stomachs, meat and cheese and meat and cheese and salads. Boring, boring. Blech.

I have decided that for this week I will only do portion control and count calories (and a ton of exercise, of course). I started today. I felt so virtuous I went to Bloomingdales and bought a new ruby red bikini. Then I took the boys out to lunch at their favorite place, Zaftigs. They had breakfast food (fat challah french toast and pancakes) and I had a grilled portabello mushroom burger and ate the roll. Oh, glorious, foodgasm. I had fruit and yogurt for dinner and just knew I was fine because the cals are low. MMMMMMMMMMMMMM

Packed up and got really tired figuring out the bike rack. Drove to the Cape in less than two hours, with a candy-colored sunset followed by a moon that looked like “a vanilla cupcake,” according to Ben (he is a great writer already!). Smooth ride in newly cleaned car with four brand new tires that were free because the company has a guarantee! Happy silly talk in my ear, animated Kingdom Hearts talk in my other ear, and lots of catching up with N.S. Our anniversary is in two days. We always celebrate it here, with our favorite people, in our favorite spot on earth and our favorite time of the year.

Thursday, June 28, 2007

Miles’ Smiles

His Baby Perfume
It makes me swoon

He’s Baby Delight

–me, singing about tiny Nat

I saw my friend Emily today. She has one of those kind of babies that makes you want to have a baby. Little Miles is in that “jolly fellow” phase, where he is grinning and bouncing his head at everyone and everything, and only once in a while stopping to puzzle over a new face, a set of keys, etc. But it is usually okay with Miles, especially if he can chew on it. His little feet were fat and edible, his belly round, and a spot of drool remained on his chin from his recent fest with my keys. Emily offered to wipe off my keys but I would not let her. You could get drunk on that smell.

I used to call little Nat’s drool Baby Perfume. I used to love it when I would have my face next to his and he would have his thumb in his mouth, then he’d take it out and turn his head quickly to me. His lips would brush my face. “Slimed!” my dad once said, smiling. Today Miles’ Slimey Smiles made me think of Baby Delight and his Baby Perfume.

The Babylust is running strong in my veins. Sometimes I cannot bear being done with that.

Look at baby Nat, that little sugar boy!

It’s Easy Being Green

Here is my Edge of Town essay, the regular column I do for the Brookline Tab, my local paper. I had a lot of fun with this one. How about that picture? Do I still even look like that? It was taken in February 2005.

(Getting all nostalgic for the MPWA years because the new book project is now moving along to a new stage. I have to meet with my editor and hammer out the details, and then line up some parents to talk to (whose kids have disabilities other than autism). If you are a mom who meets that description, e-me. We need to tawk.)

Wednesday, June 27, 2007

Gently Used, Con Brio

They say you have to feed your soul. I have no problem with that; sometimes I feel like I have to put my soul on a diet, it has become so gluttonous. Aside from hanging out with my boyz and my man, my friends, my sister, my laptop, and my fleurs, the thing that I love love love to do is bellydance, which you must know by now if you’ve been reading this blog with even half an eye.

But like any hobby, it is sometimes a challenge to keep bellydance fresh and exciting. I have learned all the basics by now, the moves, choreography, performance points, props. I have been collecting a lot of music, (put on your sound loud for a real treat when you click this) but I always need more. I have a good teacher and a good bellydance gang.

But what keeps it fascinating and fun, in a visceral way? Costumes. I belong to an amazing website that has a costume swap meet as well as all the bellydance conversation you can eat. Every day some diva lists a costume she is selling, and it goes something like this: “hot pink, all sparkles, circle skirt, gauntlets, made in Cairo…” If it is my size, I am in trouble. When I first joined Bhuz, I bought one pale pink costume. A second, a pale green, I swapped immediately because it was not flattering, and I bought my hot pink and coral Hanan with that money. Then I ordered my Safti, custom-tailored.

I was happy with those for awhile, and still I love them and I rotate each one when I perform (Ned and Nat are my audience. Nat is an unabashed fan; the other two boys stay far away.). But variety is the spice of life, n’est-ce pas? And yet, guilt is the meat of life, or perhaps the vegetables, the conscience. So I kept telling myself, “You can’t buy anymore costumes because you are not a real performer.”

Then I realized that that was as stupid as when I used to say to myself, “You’re not a real writer because you are not published;” or “because you don’t get paid.” Why do we set ourselves up for undermining?

I have an audience of two. I perform seriously for them. Right now, that is the best I can do. But why not treat myself to a new cossie every now and then?

So I satisfied my voracious hunger for new colors and beads and I bought this turquoise number that is totally over-the-top (and yet fits perfectly on-the-top). It has long fringe and tons of chunky beadwork. A long, trumpet-shaped crocheted and sequined turquoise overskirt and frothy blue chiffon circle skirt underneath. Turquoise crocheted gauntlets (sleeves). It is a vintage Dahlal, the very best costume designer. Only I did not pay Dahlal prices, because this cossie is gently used. But aren’t we all, in one way or another?

Mysterious Brown Thing

Under the table and dreaming.
–Dave Matthews Band

After dinner, Max and Ben were working together in the playroom on an RPG (Role-Playing-Game) program. Max has taught Ben how to use this simple pixel-based program to create different adventure-type video games (the blocky ship sails to the brown-patterened sand; the gnome-like boy gets off the ship and walks into a cave and ends up among elves, that kind of thing). The ugly synthetic rubbery music lives in my head, I hear it so often. But I love them playing together. It is endlessly delightful for me to look in and see them, one a miniature of the other (bulky black tee shirts, army cargo shorts, long hair). Nat is not interested but I hope one day he will be because it seems like something he’d like, too. There is a soothing simplicity to the characters and props; there is a lot of going back and doing the same thing. And I’d love for them all to play together, needless to say.

Ned and I were together in the dining room talking about some good news I had and how we should celebrate. Our laptops were open and we were laughing at something from behind our screens, which is one of our favorite modes.

Suddenly, “Mom!” It is Max’s voice.

“What?” I am already alarmed, because why would Max call me when they were doing the RPG together? If Ned is home, he is the one they call to show them things and ask questions, because the bulk of their conversation and questions are technological and technology is right out, as Monty Python would say. And Max is very unlikely to call me about something, period. He usually justs sucks it up. I am not happy about that but over the years I have learned how and when to draw Max out, and leave the rest to him.

“Something under the table.”

My stomach twisting, I say, “What?” even though I had heard. In this house, it could be anything. We have a termite contract and a separate quarterly all-pest contract, a bat no-entry guarantee and more. But there’s always something, especially in the summer…

“What?” I say yet again. They point under the table.

“It’s brown.”

“Brown?” I crouch and see nothing. I move closer.

“Ben says he saw a smaller one like it somewhere else.”

“A smaller one somewhere else?” It seems all I can do is repeat things to comfort myself, a la Nat.

I lean in, doing my Brave Mommy act. I see a small, brown thing, about the size of half an almond. No legs, no eyes, no hair, no antennae. A big roach egg? But no, those are pale (you shouldn’t know from it, but I do, 405 South 41st St., Philadelphia, my honeymoon apartment otherwise known as The Roach Motel. I actually witnessed what must have been a female roach laying an egg in panic and then running away from me. Some newlywed memories you just never forget).

Knowing it has no legs or eyes emboldens me. I peer closely at it, going up several notches in my sons’ estimation. A rat turd? But it has lots of white dots. I gingerly pick it up.

It is not a larva. It is not a legless bug. It is not a huge rodent turd.

It is a crushed, partially melted Sno-Cap. Ben had eaten them at the movies yesterday when we saw Evan Almighty, which I thoroughly enjoyed, despite its flaws. But I am all about enjoying-with-flaws. But never mind…

If I were my dad, I would have further stunned and horrified them by eating it. But it is not Atkins-friendly.

“Ben! It’s a Sno-Cap!” I’m laughing, with relief, and besides, how the heck did it get there? Yet another mystery of Life with Messy Boyz.

Tuesday, June 26, 2007

The Last Word

I made the following comment to a recent blog post of mine, but I think it is important enough an issue to make it a new blog post.

I feel a couple of things about our entire “Insult to the Autistic Community” discussion. For one, I feel remorse that I inadvertently made a statement that out of ignorance was a step backwards for the cause of acceptance of autistic people. Amanda and some others were objecting to my little wish, that in that photo, I could see Nat as “truly older than Max.” The way I understand this to be insulting to Nat and the autistic community is that he really is 17, no matter what, and to wish he acted like an NT 17 year old is as if I am saying it is somehow inferior to act as an autistic 17 year old.

I understand and respect this point. What I don’t like is the sometimes belligerent tone that the discussion took. I don’t like thought police. But if autistic people are telling me that what I did is akin to using the “N” word against blacks, or “retard,” for the developmentally delayed, then I will be more careful in the future.

I will say it again: I love Nat as he is, but the world is NT and it is more difficult to live your life NOT NT, and I want him to have a better life. Let me elaborate: I believe he loves to work, from what I have seen, but getting employment will be very difficult for him without a high school diploma, certain skills, etc. I believe he loves women, but I am not at all sure he can find a girlfriend with his functioning levels and lack of conversational skills. He would probably like to live on his own some day, but he will not earn enough to do that with the small job he can do. As a mother, it is my right to dislike those facts. Just like I dislike that Benj can be very cranky, and doesn’t like sports, and this will exclude him from some valuable relationships. I don’t want Nat (or Ben) to change, but it would make me happier sometimes if he were more able to function on the world’s terms. It would make me happier if he could share his thoughts with me. Yes it would. That does not mean autism is less-than; it means autism is more difficult. Just like probably being gay is more difficult. Or Jewish. It should not be that way, no it should not. It means that autism sometimes makes me unhappy. But so do my other children’s issues (Max can be difficult to motivate, etc.)

Meanwhile, I also feel a little pissed off because I hope that the point of my blog post was not lost on everyone. I am annoyed that there was absolutely no quarter given to me by the other side, no benefit of the doubt. I did not like the tone of some of the comments. But I ran nearly all of them anyway.

I am okay with learning something new, and I have. Maybe we all have.

Finally, I stand by all my feelings about that picture, but I will restate them differently now. I loved the way Nat looked in that picture. He looked more connected, okay? He looked older. Like he was up to something. I like that. Call it whatever you want. He looked — I don’t know — familiar, somehow. He looked like himself and yet not. I have a picture of Max that is like that, too, btw, where Max looks older than he is and I have a glimpse of the man to come. Maybe that is what I saw. The man Nat could/will be. He is still my Nat in that picture. I will leave diagnosis out of it for now.

Monday, June 25, 2007

On My Mind Tonight

These questions are not rhetorical…

Why do people get grades in gym but not in art?
Why can’t I lose five pounds?
Will I ever have the courage to bellydance in a club?
What should I read now?
When will I ever have time to go to the eye doctor?
Why do so many people care about The Sopranos?
Do more people get kicked to death by mules than die in plane crashes?
Why are my neighbors always so blooming happy?
Should we try to go to Comanche National Grasslands while in Colorado?
Will that camp be good for Nat and good to Nat?
What is a high school diploma for?
Why is blood thicker than water?
Why are there no pretty shade flowers?
Will we like Evan Almighty or is it as stupid as it looks?

Somebody Nowhere

Career Blues. Dissatisfaction with the world vis a vis the plight of the disabled adult.

I want to do stuff with my life but I don’t know how to start. My days are chopped up by kids, chores, and then some free moments where there isn’t really enough time to do something productive. I’m writing this now as the kids start their showers, hooray for showering kids. Welcome to summer vacation. Don’t get me wrong. I love it all. I love summer, more than most things in life. I love feeling hot, being tan, wearing shorts and sandals and willingly going outside!

But — I hate limbo. I hate indecisiveness and that is where I am right now.

I keep thinking about starting a 501C3 called “Autism Works” or “The Disability Works.” How do you start such a thing? I want there to be training for Personal Care Attendants and Job Coaches. Incentives for employers to hire guys like my Nat (other than his pretty face). I want to be able to supplement Job Coaches’ salaries so that good people will be attracted to those professions. So I need a big endowment, I guess. I need to write a mission statement and get planning.

I don’t think it makes any sense at all that post-22 all entitlements under the IDEA end. Why should they end? Why spend all that money and provide supports and resources to educate our kids if they then can’t do anything productive when they finish school because they still need the supports that they had in school (because they are still disabled, duh!).

I’m now on the Adult Services Subcommittee of Autism Speaks. Our first meeting is July 5. I want to pitch these ideas but I don’t know how things work there. I am the new guy and I hate that! I’m sure they have their agenda already and their way of doing things and I don’t want to be coming out of left field, but that is where my field is!

How can I educate people out there, employers, about why it’s a good thing to hire disabled people? How can I teach others not to be afraid of seemingly bizarre behaviors or apparent lack of communication? Are articles the way to go? Or am I supposed to become some kind of lobbyist?

Or is this second book going to happen? When? I have emailed my agent twice in two weeks. I feel so antsy. I feel time slipping by, for me and for Nat. I want to accomplish something, something more than the book I did now two years ago! I get people writing or calling me everyday asking for help with their kid, their situation. I WANT TO HELP but I don’t know how to harness all this energy and passion.

I feel like a dilettante. And like I’m going nowhere, too fast.

Sunday, June 24, 2007

Just Beautiful

We went to New Hampshire for the day, to Ned’s dad’s house, for a memorial service for Ned’s Uncle Dick, who died during the early spring. For much of Ned’s childhood, he spent Christmases with his brother CB and sister Sarai (today is her one year wedding anniversary, hooray!!!), his Dad, his step-mother Anne, Uncle Dick (Anne’s brother), Aunt Marie, and four cousins, Ellen, Rich, Suzie, and Ted. When he first met me and I told him my name was Susan Linda, he said, “my favorite cousin is Suzie Linder!” It was fate. I went with him one Christmas, back in 1982, when we were first dating. It was my very first Christmas, and an introduction to a big, close family, much like mine (lots of in jokes, pranks, traditions, and obvious love). Uncle Dick was cranky sometimes, but also charming and funny. It took me a while to get used to the whole thing, because they were like my family and also unlike my family, and I was just a sheltered girl. But Dick was truly an institution and we will all miss him.

Gathered in Tamworth, New Hampshire was Ned’s extended family and many of their friends, for not only does Ned’s dad and stepmom Anne live there now, but Anne and Dick also grew up there! It is one of those quintessential New England towns, with meadows, mountains, and a quaint white church in the middle of a field. Ned’s cousin Suzie now has two delightful children, who are now great friends with Benji. Other cousins were there, whom we had not seen since Nat’s bar mitzvah or even our wedding (almost 23 years ago!).

It was a brilliant, sunny day, and a lovely service. Many of the family had brought small tokens to place in the grave with Dick’s ashes, to bury him Pharaoh-style. Ned brought the first five stanzas of The Night Before Christmas, which Dick always read to the kids at Christmas, with tears in his curmudgeonly throat at the very end. His daughter Ellen poured scotch in, and then we all tried some. It was a very unusual ceremony; warm, funny, sweet, brainy and quirky — totally typical of Ned’s family.

Nat paced the cemetery and grinned in the warm sunlight and because of all the familiar faces around him. Ned’s family knows him very well by now and it is very easy to be among them.

We also made an unusual stop on our way home.

Here is Ned’s Tabblo of the kids, and me, his favorite model.

Tabblo: Family in Tamworth

Saturday, June 23, 2007

Walk With You

Don’t obey your shoulds.

I’m almost afraid to say it, for fear of it changing, but today marks the end of the second day of no outbursts from Nat. He has only been happy. We have been steadily using our daily lists to describe what we think will happen, and this seems to be working for him. Today I wrote about the fact that Max and Ned would sleep late, and that Ned would be taking a trip to the camera store after breakfast.

I realized, just before Ned was to leave, that I wanted to get some exercise. This was not on the list. I wanted to run at the Reservoir, and I thought that since Nat seemed to be so content, maybe he would want to run with me. He has not been interested in running or riding bikes for so long; his lack of interest in those things has coincided with his storminess. So I thought, since the outbursts have gone away, perhaps this also means that his interest in the outdoors will be back. It felt a little risky, though, especially given that it was not on the list.

But Nat agreed to come with me immediately. And here is a great thing I’ve discovered about getting Nat do things. When I want to get Nat to do something because I really want him to just have some fun, he almost always agrees to do it. But when I want him to do something because I feel that he should be doing something “productive,” he is inclined to resist. So I kind of knew(hoped) he’d want to run with me because of how much I wanted it to happen. And I wanted it to happen because I was feeling reconnected with him now that the lists were making him feel at peace.

I had to find him some running clothes and shoes, and surprisingly, he fit into my running shoes! Somehow we have the same size foot. We drove over to the Reservoir and I tried to get him to stretch with me. Then, as soon as we started on the gravel path, he burst ahead of me, with arms waving and silly talk going wild. He was happy.

I ran behind him, hoping he would be careful as he passed the little building that is way too close to the path, leaving you no choice but to run treacherously close to the water. He was fine. By the end of the first mile, I asked him to slow down and we walked a little bit. Then we started the second mile, and he was a lot slower this time. Soon he was behind me, but still seemed happy. At the end of the second mile, I wasn’t feeling that great, which is unusual for me when I run. It wasn’t so much that I was tired; it was a feeling of just not really enjoying the run, maybe because I’m used to running alone and with my iPod and this time I was just a bit too nervous about Nat to really get into it. I was glad to have gotten him running, and I kept thinking, “I can’t wait to tell Dad,” but I did wish it had been a little more fun for me.

He caught up with me as I started to walk. His hand touched mine and he said, “Walk with you.” I kept my hand loose, not returning his touch, because I figured he did not mean actually to hold my hand.
“Sure, let’s walk, Nat,” I said.
His hand bumped mine again. “Walk with you,” he said.

He wanted me to hold his hand. So I did. The tiniest tears started at my eyes, moved by the dear innocence and sweetness of this child of mine. I held his hand for a while, and then we climbed the hill to the car.

My Feelings Are Mine, Just As Your Autism is Yours

I am moved to write about some of the outcry over my Dreamchild post on Ballastexistenz, and to some degree, on my own blog. There’s a lot being said about how expressing feelings on a blog is actually a form of taking action on those feelings. I can understand that claim. They are afraid that my expression of those feelings will hurt Nat. When I expressed my feelings in Dreamchild, I thought I took great care to show how the bulk of my feelings about my son are positive and that I am taking into account his abilities when I write about him as well as when I deal directly with him.

What I can’t understand and won’t accept is the sentiment that “therapy culture,” as the comment describes it, is something to dismiss. That if I say that these are my feelings and they just are, they are neither good nor bad, that is something to dismiss as “therapy culture.” In fact, feelings are in a different category from thoughts and actions. Although for some cases, you can work to change your feelings, there are other kinds of feelings that you may not be able to change. Feelings that arise from wishes, from your own flaws, from others’ disturbing behavior, I don’t believe can be changed very often.

As far as my right to express those feelings, I maintain that I have that right just as much as those Ballastexistenz readers have the right to express their feelings by criticizing what I wrote. I took great care to put my feelings and their expression in a context that stated that I was clearly not happy about having these feelings; that I love and accept my son for exactly who he is; and that I would never hurt him; and that I was sorry for having hurt others by what I had expressed. Nevertheless I believe that my expression of those ugly feelings was very helpful to others who have also experienced similar feelings and then they feel even worse about themselves and their lives. Acknowledging our feelings, even publicly but with care and sensitivity can be helpful in working towards ultimately changing those feelings, or at least understanding how our actions affect others. I am grateful to Ballastexistenz et al. for pointing out how my blogging about my feelings is in fact an action that can hurt. Even though I thought carefully about how I wrote them down, using the references to Nat’s true age destroyed for them the message I was trying to convey. I believe I hurt them, that they are empathizing with Nat. And I thank them for that, and I apologize again for that part of what I did.

I disagree with Ballastexistenz who says that feelings don’t just come up in a vacuum. I find that feelings are exactly that and more. I don’t dismiss “therapy culture” that fosters that belief; I think that is absolutely the case.

I find it ironic that Ballastexistenz and some of her readers are basically saying that I should change my feelings, and the way I express them, when they take offense at society asking them, as autistics, to change their behavior and in some cases, to change how they see the world. I value the perspective the autistics in my life have brought to my world, and I will try in the future to be more respectful of their feelings, especially Nat’s.

Thursday, June 21, 2007


I love extremes, anywhere in life. The first few chews of gum, for example, are as brightly delicious as the last chews are horrible. Is there any other food around that presents us with such extremes? Soft, pink, squooshy, sweet, mobile at first; small, dented, and rocklike by the end. (my theory is that once you blow the first bubble, it is the beginning of the end. The exposure to air saps it of its juiciness. You have to resist the lure of the tongue forcing the rubbery flatness into a sphere on your lips. So hard to do. You make the choice: longer lasting sweetness until it fades slowly vs. playful bouncy bubble-blowing and a shorter life)

It’s kind of like living creatures: babies are just about universally beautiful (except, I suppose, for the Seinfeldian case of the Singularly Ugly Hamptons Baby): round and perfectly miniature body parts, sparkly, nonjudgmental eyes, rosebud mouths. And kind of decrepit at the very end — not that there’s anything wrong with it. Actually, flowers, too, are loveliest when first opening, and then, of course, at their demise, you just shouldn’t know from it. Withered, brown, wrinkly, drooping, and the only scent left is usually an overly ripe faintly garbagey smell.

Also, it was the most perfect summer day. Every cheery cliche imaginable: warm, close air; sparkly sun; blue sky; good smells on the breeze; the faint sound of mowers; birds singing their wacky repetitive songs. As well as a few thunderclouds at around 5:30, the kind with strangely bright sun radiating around the edges, which turn the sky dark purple. I call it Thunderlight.

Today was the extreme opposite of yesterday. Today I had a firm grasp on my family and how to interact with them in the most pleasurable way. We came up with our Daily List for Nat, and he smiled through breakfast. I ran errands with Max and Ben, newly released from school. We got a treat when we were done. I had a bite of a Finagle Bagel. Iced coffee. I mowed the lawn, and did a great job of it. I weeded and hacked at the plants that were beginning to snake their way around my house, arbors, and roses. I walked with R around the Reservoir, with her little maltese Maggie, a white snowball of a dog whom I adore.

And when he got off the bus, Nat found the Evening List waiting for him, and there was very animated silly talk the rest of the night. I could just feel that there’d be no outburst. I was linked up with him and he with me. Occasionally I would hear his silly talk soften into light laughter, making me feel slightly drunk with joy. The light poked out from him and lit up our dinner with gorgeous, bubbly happiness. The contrasting kind of happiness that can only come from the relief of something very dark and heavy. Thunderlight.

A Reese’s-Eating Grin

I want to thank everyone who weighed in with regard to Nat and his outbursts. One comment in particular was extremely helpful, where an anonymous reader pointed out that sometimes even verbal people with ASD prefer not to talk; that it tires them out or frustrates them. Nat can talk, but hates to. And so Ned and I decided to use the written word instead, to set down on paper the salient points of his morning, and I will also do it for the afternoon.

He came down this morning and we merely greeted him, and silently left the note at his seat. He read it eagerly, again and again, like it was as interesting as the morning paper. And why not? It is all about the stuff that is most central to his day: what he and his family members are up to at any given moment. By the end of breakfast he was grinning and quietly silly talking in between bites of dry Reese’s Puffs.

Tabblo: Strategy for Nat

We have been stymied by some of Nat’s outbursts lately.  Nat is a teenager with autism, a dynamic combination when it comes to excitability and unpredictable mood swings.   We realized, however, that even though he can communicate verbally, he does not like to and it may in fact tire him out. 

Ned suggested we write out the important points of each day for him, particularly at meal time, when we anticipate some kind of outburst.  This morning I recorded his morning on paper, and he came downstairs, read it again and again, and eventually smiled his way through breakfast.  Whew.  … See my Tabblo>

Wednesday, June 20, 2007

Getting Closer to Fine

I went to the doctor, I went to the mountain
I looked to the children, I drank from the fountain
There’s more than one answer to these questions pointing me in a crooked line.
–Indigo Girls

There are three major components to understanding another human being: close observation of his behavior and drives; recognizing what is similar in ourselves; and then feeling what the truth is. I truly believe that if we understand what we ourselves do, our motivations, agendas, drives, and needs, then we can start to understand the people in our life, on the same meaningful level.

I’m still trying to understand why Nat has these disturbing fits. Often they are around the dinner hour; last night, for example, he worked himself up to terrifying screaming because he wanted Ned to use the chili powder, but Ned did not want to. We had to let him scream it out, pretending it wasn’t happening. Do not reward the negative behavior; reinforce and reward the desirable behavior. You think I like that? A behavioral solution? No, I don’t. But what else can others suggest? Particularly the ASD readers. Give me real advice I can use, if you can. I try keeping things very regulated and regimented; I tell him “first — then;” I talk him through the upsetting thing by repeating what he wants to hear. I hug him when he asks for a hug, which he often does. But I just found out today that these tantrums also have been occurring on the bus as he sits in the line waiting to be brought into school. He pinched his driver today, too. She told me how she responds to his screaming, and it sounded like what I do. We calmly and gently reassure him many, many times that the thing he is waiting for will happen in so many minutes. He likes the certainty of exact time, even though we are not sure that he can actually tell time by looking at a clock. He nevertheless has a real feel for the passage of minutes, hours, days, and weeks. And Denise, the driver, is now going to try to reduce the waiting time by arriving later in the afternoon and earlier in the morning.

With all that in the back of my mind, I discussed some of my own issues with my therapist today. How sometimes continual success and peace raise my anxiety levels, counterintuitive though that may seem. It’s like when things are going too well, I find myself thinking, “Wait, wasn’t there something that was bothering me, though?” And I feel the flicker of anxiety, worry without a name or shape. Then I search for that thing, plumbing the dimmer regions of my brain like a tongue hunting for a cold sore.

We talked about how this anxiety probably arose long ago, when there was some kind of disconnect between something I did and how it was received by my family. Such anxiety, I think, goes way back to childhood feelings of rage and impotence, the most primal fears of abandonment and death that we experience while very young. But we learn over time that we will survive this or that disappointment, betrayal, anguish. But I may not have learned it so well.

I flashed to Nat, suddenly, rather than any association with my own childhood. I thought of how much he is achieving in school lately; his last progress report had 17 goals achieved and only a few progressing. He is successfully employed by Meals on Wheels, he is mastering his community purchasing, his telephoning, his typing, his reading comprehension, his sports, his conversations, his interactive leisure time. All day long, from 8:30-3, he has teachers asking him to try this or do that, and when he does, they praise him. We see it here, too. So much great language, willingness to do his chores, his routines.

So then I wondered, does Nat, like me, feel a heightened anxiety that accompanies his own success, strengthened by his tiredness from all the hard work he does? Does he feel afraid of all the change he himself has wrought, through his determination during the school day? Does he feel, irrationally perhaps, that he will be cast into a scary, unknown, place if he allows change to occur? Because those are my feelings, so I wondered if this kind of anxiety for the next step — literally, the next phase, the transition — causes him to flip out.

Sure, we are not the same person, and perhaps he is actually blessed, like his father and brothers, with a stronger core. But I suspect he and I share a fragility that is shaped by our neurology and our childhoods, somehow. Anyway, I feel it, more than know it but sometimes that is closer to the truth than anything the data can show me.


I surely won’t get 28 comments on this blog post. But I got surfing and beaches on the brain today, even though it is overcast, because I am going to the Cape on Friday to see my parents and my sister. And I have been talking to my old Israeli boyfriend (from 29 years ago)about having him visit us on the Cape and teach us all how to surf! He has been surfing for decades. He taught me how to drive a tractor; why not how to get up on a surfboard?

Monday, June 18, 2007


This is the third time I am using this blurry photo in my blog.

When I first saw this picture on Ned’s computer screen, I could not take my eyes off it. There was something about it. Soon I found tears streaming down my face and I knew what it was.

This, to me, is a flash of possibility, a little trick of What If. There is something here about his smile that is more open and wiser than usual, as if he is laughing at something tangible, rather than something in his own head. There is something so typical teenage-boy about his stance, something so expressive and confident about his eyes, maybe because they are blurry, that tricks me into suddenly knowing what Nat would have been like if.

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

And then I blink, and he’s himself again. And it’s okay. The soreness recedes mercifully fast, and I’m back, and it’s just a cute photograph. It’s him and it isn’t. You can’t construct people from your wishes, I suppose. That’s why we have novels.

The Good, the Bad, and the In Between

Where does bad end and good begin? If you think about it, there is actually a very faint line between the two. There is a spectrum, in this as in all things. Of course we know a bad thing, and we know a good thing. Just like we know autism, and we know NT. But there is so much in between.

What am I talking about, on this lovely Monday morning, when I’m supposed to be at the reservoir, running? Is it that my iPod needs charging? Have I had too much coffee, not enough sleep, increase in Prozac? All of the above. But there is more. You know how I’ve been talking about Nat’s increased level of anxiety over the last six months — probably sparked by too much Luvox, just like the Period of Too Much Zoloft, see chapter 8 — and the new kind of howling/barking/perseverative behavior that has come out of it? A discouraging, scary, heartbreaking thing, right?

Yes. And no. For just like during that difficult, frightening time when Nat was 11, he has also had a profound increase in his communication abilities. He is more connected to us than ever. He not only obsesses about what will be happening to him (“Go to Colorado, summertime.”), he also obsesses over what is happening with us (“Max will wake up soon. Daddy’s on his way home from work. Mommy’s going to finish the laundry [endless laundry, because the big pants and shirts worn by my gigantic sons take up so much space in the hamper, d’oh]”)

This is not news, of course. I have been chronicling the various heartstopping comments Nat has been making, his emergence, little tentative forays into NeuroTypicalLand, an unpredictable place of loud noises, where people communicate with too many words and strange shapings of their faces and bodies; where the rules are mostly unwritten but everyone seems to know them without being told; where impulse reigns and consistency is the hobgoblin of little (and spectrum) minds.

But there is something else that has come of all this upheaval. As Ned was climbing into bed last night, he said, “You know, Sue, it actually worked out great at dinner. If it weren’t for Nat — “
I said, “I know! If it weren’t for Nat, Ben would not have come with you to the bookstore after dinner.”
“But because he was scared of riding home in the car with Nat, he went with Max and me!” finished Ned. “And they were chatting the whole way, Kingdom Hearts this, keyblade, that.”

We looked at each other. We had never thought of it this way. We had only been thinking that Nat’s scary outbursts are something we need to get at and stop, something that scares the boys and is therefore a bad thing.

But every stone thrown into our pond has ripples. Nat is finding ways to weigh in, to say, “I’m here, and I don’t like what you’re doing! I want this, instead!” And he is forcing his brothers — who have heretofore tried either to manage or simply ignore him in order to find their own peace — to pay attention to him and change their own behavior. They might be a little afraid of him these days. But maybe that is not all bad. Maybe it is a heightened awareness, a tuning-in, to Nat, and to each other. And if that brings about more connection all around, then that, my friends, is a good thing.

Tabblo: Three Millions

My grandma once said of my (at that time, two) little boys, “I got two millions, one, two.”  And then she realized she had left me out, and she added, “And you’re the thoid.”  Here are my millions.  And I’m the fourth, I guess. … See my Tabblo>

Sunday, June 17, 2007

Tired But Happy

I realize that the last blog post is actually mostly just summary! That goes to show you how wiped I am. I feel good, but I have no energy to blog about it. I did this Tabblo while watching t.v. with Ned. We are both very happy about how the weekend went.

Look at the bottom left pic; see how much taller my boys are than me! I can’t believe it!

Tabblo: MA Special Olympics State Games Day 2

All That Glitters is Bronze

Come dance with the west wind
Touch all the mountaintops
Scale all the canyons and onto the sky
Reach for the heavens and hope for the future
And all that we can be, not what we ought.
–John Denver, “Eagle and the Hawk”

Too many things to write about, which is good, but it also ends up meaning I don’t want to write. I get overwhelmed when I feel that there is too much I have to write about. Then I start to get bored with my own life. So to keep that from happening, I have to get back to my writing-feeling, which means I just have to think about one or two feelings and memories from yesterday and write about them, rather than do some pedestrian summary for you.

Ned enjoyed his many presents, particularly the tiny indoor helicopter I and his sister had gotten for him (so he has two, but they are different, and he is totally thrilled with having both). I had also gotten him an antique Chinese calligraphy brush (Ned does calligraphy), a book on photography, and the new Paul McCartney CD (I hate Paul. Never saw the appeal. He also seems a bit whorish somehow with changing to the Starbucks label. My fave Beatle was George.). Max got him John Hodgman’s new book, which is really bizarre and funny. You can only read little bits at a time. And Ben got him a SuperHero Action Figure book. (Aagh! I’m summarizing, snore, snore)

So good seeing Mom and Dad, even though such a short visit. I had burned two CDs for Dad for Father’s Day, one was my favorite love songs combined with some Arabic artists (Natacha Atlas and Amr Diab) and other (like Eric Clapton and Bob Dylan) that I thought he’d like. The other CD was what I called “Out West Songs,” which are a bunch of old John Denver that he used to love during the ’70s, and Glen Campbell’s Rhinestone Cowboy. When I heard “Eagle and the Hawk” I had chills of delight and I called Laura immediately on her cell and asked her to listen and identify. She said, “Oh, wow!” It is a wallop to the system, the rush of teary, sweet memory of just hanging out with Dad, being part of his joy.

Mom and I had the best walk and talk while we went to get sodas at the Games. There is nothing, absolutely nothing, as satisfying and embracing as a heart-to-heart with Mom when you are in great need. And I was. I have had a really tough year. Too many ups and downs even for me. But she just set me straight and gave me lots of hugs that felt like the most familiar thing on earth and yet also different because she is smaller than me now.

And Nat. Oh Nat. He was in The Zone. And I don’t mean the Pinching Zone, I mean that peaceful happy spot for success. He was quiet and patient while he waited and waited for his heat in the Men’s 25 meter freestyle. We all sat together in the steamy building watching the others in their races. Stephanie, Nat’s old teacher who is also coming with him to his sleep-away camp, joined us.

He filed in with his team, ahead of everyone else, tall and beautiful, a slight smile on his lips. He got right into the water. He swam his hardest. Those guys were fast. I was sure he came in second, but he ended up getting the bronze. He was standing there on the podium; I wondered if he felt a twinge of disappointment the way I did at realizing he’d come in third. But once they slipped that medal over his head, he burst out in the most gorgeous grin, which stayed on his face until the car ride home.

Tabblo: MA Special Olympics State Games Day One

Friday, June 15, 2007

A Big Weekend

A very big weekend begins. It is Ned’s birthday tomorrow, and the Massachusetts State Games of the Special Olympics. Nat will be swimming after lunch, at Harvard. Mom and Dad are coming for the Games and I will give Dad his Father’s Day present tomorrow. It is a great present, something I have made myself and I know he’ll love it. I can’t say because sometimes he reads this. Suffice it to say I have been full of summertime memories, of Out West trips and Mom and Dad, young and hippie-like (Mom, always stunningly beautiful, wore big floppy hats, big sunglasses, and pigtails; Dad wore long sideburns, cut-off jean shorts and cool tee shirts that said things like, “Go Climb a Rock, Yosemite Mountaineering School.” I have always been so proud of them, of their youthfulness and their idealism. And they love this country, and imbued us with the same love for it by taking us to so many national parks.

All this and Neddy Sweets. I will cook his favorite dinner tonight (Jambalaya with extra sausage and no shrimp) and a special dessert. I better get going on it (with Nat’s help, of course) because it is already 4 o’clock. I have some really good presents for him, and figured out what to do about the big one. We are also going out tomorrow night, to some good restaurant somewhere (his choice, so it won’t be fancy, you can bet).

Then Father’s Day and more swimming for Nat. The Flag Day celebration is big in my town, but I’ve been so many times and the boys could care less about the parade, the rides and the funnel cakes.

Summer’s here, and I’m for that.

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