Susan's Blog

Tuesday, July 28, 2009

Doesn’t Sit Well With Me

This afternoon I was telling a very wise woman I know about how it is with Nat these days. I feel such a thin connection with him, because I am still relying on the old connection, that was born of living with him, existing very close in space together. Doing things with him and for him, was the way Ned explained it. “That’s why I take walks with him when he’s here,” he said. “And why I clip his toenails every time he comes home.”

This little admission filled me with delight. It was so Ned, so basic, so elemental and true. He didn’t examine it; he just did it. But then I realized that there are so few things that I do that way. I’ve been wanting the relationship to snap back to the way it was before Nat moved out, where he was just one of my boys and I could even take him for granted a little, the way you do with loved ones. You have to be able to take them for granted some; it is how we live together day-to-day. You can’t always be noticing someone in your life because then you’d always be aware, rather than just being.

I long to just be with Nat, not conscious of our time together. But I don’t know how to make it feel that way again. Every weekend when he comes home it feels like I have to make our time Count. I can’t just relax and feel that it’s okay.

I’ve been hearing for years the advice “you just have to sit with it.” This may just be the therapist’s favorite refrain. “Sit with the feelings and see what comes up,” was what my beloved (former) therapist once said to me.

I haven’t been in therapy for a while, and it’s not because I’m all finished. No way is that true. Rather, it’s mostly because I did not feel that the process was meaningful to me anymore. It felt like I was spinning my wheels, digging up rotten old stuff that was just hurting me and not going anywhere.

Today I thought I understood a little better how it all fits together — sitting with it, and being with Nat in a natural way. And the answer is that there is no answer. It just is. It is an uncomfortable thing in my life, one of the many things I have to just kind of sit with. Perhaps once I turn my mind to other things — like writing and dancing — and feel the peace that they bring, I will be able to carry that state over to my times with Nat. I hope so.

Sunday, July 26, 2009

You Must Remember This

“We’ll always have Paris.”
–Humphrey Bogart to Lauren Bacall, in Casablanca

I have been sleeping a lot (although I did do an hour-long workout at the gym to guard against the Paris pounds) so I have been too sluggish to blog much. There is just so much about the trip, but it will mostly remain in my heart, I think. I am going to list my favorite parts of the trip, and my least favorite as well:

The Best Things About Paris
1) I successfully used French about 75 – 80% of the time.
2) I never felt like a slob compared to Parisiennes.
3) The best breakfast was the one at Coquelicot, (“poppy” in French), a tiny yellow-painted cafe in Montmartre. We had brioches and baquettes and the most delicious jam.
4) The Eiffel Tower was larger than life, and just perfect, especially the fact that they sold champagne at the very top — and my sweetheart bought me a glass.
5) The Pont Alexandre Troisieme was my hands-down favorite bit of architecture, with its thick gray-green fondant-like appearance and its gilded statues and puplish glass lanterns.
6) Laduree, with its gold-and-green canopied cafe and pages and pages of desserts. Plus, a tiny little French grande dame sat next to us, complete with silver-blond Grace Kelly coif, white gloves, pink Chanel suit, and gold lipstick case.
7) Going out one evening just with Ned and having wine, cheese, and dessert at a cafe near the Louvre.
8) The bed at our hotel.
9) Cafe au lait.
10) The sound of women speaking French.

What I didn’t like:
1) Nat wasn’t there.
2) So many smokers.
3) Having to find food that we all liked.
4) How expensive food was.
5) Swollen feet.
6) Terribly long lines at every attraction
7) Our cell phones did not work — also a plus.
8) I spent 10 E on 15 minutes of Internet once — that is like a dollar a minute.
9) The annoying crafty vendors who get you to buy things you don’t want or need.

Here is a Tabblo that Ned made of the highlights of our trip.

Tabblo: Paris 2009

Change of Venue

Ned and Max are watching the end of the Tour de France (on the Internet) and we can see exactly where our hotel was (right across the street from the big ferris wheel in the Tuileries.

It’s bizarre having been there just yesterday. It was a fantastic vacation. I haven’t begun to go through it all in my head; I’ve only just sorted out the billets and receipts and brochures that littered my kitchen counter when I cleaned out my bag. Last night Max showed us the movies of us he had taken all week, and we went through our highlights in his room until we all just fell asleep — at 9 pm. I woke up at 3:30 am, feeling awful, and went downstairs to sleep on the couch, which worked. Sometimes a change of venue is all you need.

After a long plane ride, where time kind of stops, I find myself right back here, home. My thoughts turn to Nat, whom I really want to see. I just spoke to the House, and it made me feel pretty low. Nat’s life is so much consumed by learning now, rather than just kind of random living, which is what he used to do here. It is said that autistics crave consistency and structure, and that is what we are now giving him, by having him live there.

It is the same old thing, though. I don’t know how to know if he’s happy there. I wish things were different. Soon he will be going off to that camp in Colorado, and I can only hope that this is his change of venue that will give him pleasure like we four felt this past week.

Tuesday, July 21, 2009

J’aime bien Paris

Cela est ma cartes postale a vous:

I can’t believe I’m here in Paris. Max keeps saying that, too. He and I keep trying to speak French, and I’d say we are getting somewhere (with the Parisians) about 80% of the time. They always smile and let me try to finish saying whatever I’m saying; one man even asked if I would prefer English, but I said, “Non, francais — lentement?” (French, slower?) And we continued in French. He was giving me directions to a shoe repair. The shoe repair man fixed my heel and waved away any charges, unsmiling. Then I said, “Vous etes magnifique!” and he smiled.

I think Parisians are friendly and polite. I can’t imagine where the whole reputation for snootiness comes from, seriously. If you approach just about anyone with confidence and warmth, and you try to speak their language, they are very happy. In some ways the French are easier to deal with than some Bostonians! (Still, Boston is first in my heart.)

At the hotel, I used a French PC, and the keyboard was all different, so I kept making des erreurs, which kept making me laugh. I ordered a cafe au lait, checked email, and then waited for the boys to come down. They did not; two hours later they were still asleep! Jet lag is weird. I actually have not really experienced it, probably because I’m just hyper naturally. And here — so happy.

We climbed Notre Dame, after a breakfast of croissants, and found it to be stunning, and an arduous climb (400 steps). No complaints from the boys, because it was just incredible. Those views framed by the Gargoyles, all of Paris displayed panoramically: gold domes, verdigris statues, leaden Mansard roofs, stone, trees, and in the far distance, skyscrapers. It reminds me of Washington DC, with monuments every few feet; Boston, with three-story buildings attached together, New York, with some wide avenues, and bustling, stylish people and tourists. But also — there are some winding streets with buildings leaning upon one another which look like fairy tale villages or what I imagine places like Morocco to look like (particularly au Quartier Latin).

Today we are either climbing Montmartre or walking through Les Egouts (the famous sewers of Victor Hugo fame) and perhaps the Catacombs. It is a beautiful day so I would prefer the former, but Benj wants cool creepy underground stuff.

I called Natty last night and he sounded tired and distant. 🙁 I want him here. I just do. I think he might have enjoyed some parts, particularly the climb up Notre Dam and the ice cream at Berthillon. I tell myself he is 19, living his own life and enjoying it, particularly his leisure time exercising (sound familiar) outside and on the treadmill, and also his jobs. He has school year-round, so it isn’t really right to take him out too much, but still he is going to do the week at Extreme Sports Camp and I think a few days with us on the Cape. During this week his calls home will be to my parents, who are totally delighted hearing from him by phone. Dad and Mom are also keeping in touch with the House staff. When I called the House last night by surprise, on impulse, I spoke to Martin, who is French-Haitian and was delighted that I was in Paris!

This is just a perfect little slice out of my usual life, and I believe, at least in my mind, and a little in my heart, that it is good for Max and Ben to have this experience without the stress of traveling with Nat. They have to feel that their lives are primary in the family; I have heard so much of special needs families that are all special needs all the time. We were like that, too, for years and years. It is no one’s fault; it is just so hard to be otherwise, and I am thankful to have this Elysian respite for a week, for my two other children as well as for Ned and me.

A bientot,

Friday, July 17, 2009


I feel sad about Natty today. I had heard from his teacher that he had three outbursts before noon at school. He kept yelling about “going home.” The theory was that he was confused as to whether he was going home or not.

I’m not so sure. I think Nat knows exactly where he’s going to be when. But he knows that he is not coming home next Friday, because we’ll be in France — and he won’t. I don’t think he cares about France; to be honest, I don’t think he knows what France is. But I do know that he loves to travel, and he knows he is not coming with us. We made the decision months ago. I don’t want to go into it.

I cried today, and Ned pulled me onto his lap. I said, “I wish it wasn’t this way.” Ned said, “Oh, Susie.”

I was crying right in front of Max and Ben. Not good. Do they know that I feel like that sometimes? How does that make them feel? Do they wish they could make me happy? Ben springs to help me and make it better whenever he senses my sadness. I didn’t want that for my kids! I didn’t want them to be burdened by my depression.

Nat walks around like a ghost on this visit. No smiles, lots of thumb-sucking. We took a walk to Emack and Bolio’s for some ice cream. He scarfed it, as usual. It was cake batter, one of my favorites. I had chocolate non-fat frozen yogurt. Everytime I asked him if he wanted to do something, he’d say, “No do ___!” Not even with an exclamation point. Total indifference. I felt like a nagging mother. I suppose that should make me happy, because that is “age appropriate.” Yay.

He didn’t want to hang out with us, but that’s normal. He walked around, room to room, until I said, “Do you want to go to bed?” He said, “Yes” right away. Okay, maybe he’s tired.

Why is coming home such a huge deal to him that he has outbursts, and then when he is here, he doesn’t know what to do with himself? Does home not feel quite like home anymore? Or was he always like this?

Sometimes I feel like I don’t make a difference to him. I want to make a difference. I want to know. I just want to know.

Wednesday, July 15, 2009

Please Act To Ensure Autism Insurance Coverage

From Autism Mom Shelley Hendrix:

Whatever your thoughts are with regard to the national health reform discussion, whatever your party politics are, I want you to think about this. Children with autism deserve appropriate health care coverage for their medical condition. Some children in some places have access to that. Most children with autism in most places do not.

The health reform ship has sailed and autism insurance reform is not on it but it will sure reflect in the changes from Obamacare compared to Trumpcare.

H.R. 3200 is currently in mark up and our hope of acheiving autism insurance reform as part of the larger health reform initiative will require an amendment. We can get that if we can be loud and generate thousands of phone calls into Speaker Pelosi’s office over the next couple of hours.

Here is how you can help:

1. CALL Speaker Nancy Pelosi’s office at 202-225-0100 and tell her office that health insurance reform that does not stop autism insurance discrimination is unacceptable.

All you have to say is this:

“Hi. My name is ________. I believe that health insurance that does not stop autism insurance discrimination is unacceptable and I am counting on Speaker Pelosi to be sure that children with autism have appropriate coverage for the treatments and therapies they deserve access to for their medical condition. Thank you.”

2. GET EVERYONE YOU KNOW TO DO THE SAME AND MULTIPLY YOUR EFFORTS! You need to get 20 people in your life MINIMUM to call within the next two hours and you must keep the pressure up and keep the pressure on if you want to see this for your children.

For more information on what autism insurance reform can do for you visit either or you can read my blog at Huffington Post at

This is urgent if you want this. All children deserve this. From coast to coast.

Shelley Hendrix

Monday, July 13, 2009

We Can Make This Into More Than Words We Speak

How can we really know?
Just how it feels, how does it feel?
–Jack Johnson

I took Nat to the dentist this morning to get a cavity filled. I was glad to have him for this extra night, coming off of the vacation week. It would have been too abrupt to send him back Sunday. Not that it was easy keeping anxiety away while I waited for his appointment; I was definitely worried that he would be freaked by the needle in his gum. I still cannot relax and have faith in him. I’m still filled with the possibilities of how he might act. I’m terrified, deep down, of him hurting another person and having to go through our judicial system, like Sky Walker. I’m more afraid of that than of him hurting me. I don’t go through my days living in fear of this, of course; it’s just that there is this low-level dread that is with me when I take him to appointments like this one.

Of course, he was fine. In fact, he was giddy. I hid behind the half-wall and listened in on things, ready to jump in and save whoever might need saving. Nat giggled through the entire thing, without the benefit of laughing gas. The dentist kept up a steady stream of chatter: “Do you like boats, Nat? I love boats. I have a friend who has a big boat. You’d like him.” Afterwards, the dentist shrugged to me and said, “That’s it!” or something like that. I had a lot of questions, having never had a cavity myself, such as when he could eat, whether he would feel pain as the local wore off. “That was intense!” I said. “For you, I guess,” replied the dentist. “He’s great. Always is.” I’m so glad he thinks so.

After that, I took Nat to school. My stomach was tight with dread. But Nat was very smiley stomping into the classroom. He gave me a nice long relaxed hug goodbye.

I cried as I walked to the car. It had been a great vacation, wonderful having him with us. It is not easy, but I think that is because it still hasn’t registered with me that he is okay. He handles most situations with aplomb and enthusiasm. The current experiences with Nat do not match the apprehension I usually feel about him. That sucks.

When I got home I was tired. I could either nap or something else. I did something else: a 10-mile bike ride. I listened to Jack Johnson on my shuffle and sang or whistled all the way through Brookline. I was thinking, over and over in that benign repetitive manner that biking induces (which is why I do it; it takes the edge off all of my thoughts), that I don’t know what Nat thinks or feels and that this is the biggest loss, for me and for him. I thought, “How does it feel to be Nat? Numb? Vaguely sad? Happy and unfettered?” And that song, What You Thought You Need was on and reverberated relevantly. How does it feel? Just how it feels.

Sunday, July 12, 2009

Cape Cod Pictures

We’re back home, and now comes the Tabblo!

Tabblo: Favorite Place

Saturday, July 11, 2009

Of Course We Had Fun

Took Nat, Max, and Hannah to our favorite mini-golf course yesterday. (Ben hates it so he stayed home with Ned.) It was a great time to go because everyone else was still at the beach — we had gone at 10 and we were long finished by 1:30! So off to Cape Escape for a round of miniature golf.

Max and Ben do not like the courses with the little props, but I do. This course is particularly a favorite for them because it is truly like a miniature adult golf course: it has tiny sand pits, rough, apron, putting green, and water with koi in it! Unlike a real course, though, there are waterfalls and a tunnel to putt through. The whole time we were there they were playing songs by Jack Johnson, the Beach Boys, and Jimmy Buffett.

As a kid, mini-golf was a very large part of my summer vacations. When Laura and I were very young, my parents took us to Montauk Point, Long Island every summer. In that sleepy little town — not far from the Hamptons in miles but eons away in terms of everything else — there was a mini-golf course called “Lil’s Puff ‘n’ Putt.” The “puff” referred to the sailboats they rented — there was a small pond right next to the course. My parents would take a little sunfish out while Laura and I played. It was nothing short of bliss. It was just the kind of mini-golf course that I love: lots of props, like a windmill where you have to time your shot so the blades don’t hit your ball; or a small raised ant hill you have to get your ball inside. Anyway, the best thing about Puff ‘N’ Putt was that if you got a hole in one on the very last hole, you would win a free game.

Laura, ever the big sister, would keep score, while we putted away. I did not think I was very good at it, but one summer, at the very end of the game, I got a hole in one, and won a free game. Because we were leaving that day, we could not play it, but I kept the scorecard the whole year, and when we returned the following summer, Laura and I played our free game!

We got to be pretty good at the game; Dad showed us how to aim for the hole, how to tap the ball gently, and the correct way to swing and stand. I improved my game as a teen when I worked at country clubs, and one summer I dated a groundskeeper who took me night-golfing (no, this is not a metaphor). Jeff showed me how to play the real-sized golf game.

I have taken my sons mini-golfing, but not as much as I would have liked to (not as much as I did growing up). For years and years we assumed Nat wouldn’t like it or wouldn’t get it. We finally got up the guts to try when Max was around 8. He had true beginners luck: a hole-in-one in his very first game. This made him think he was good at it, and so from then on he always liked playing. Whenever we would go to the Cape Max would come up with his list of things he wanted to do while on vacation (or “Pcation,” as he called it for some time, bless his little boy ways). Cape Escape mini-golf was always on the list, along with eating at Moby Dicks and taking nets to the bay for hermit crab-hunting.

It also turned out that Nat actually didn’t mind mini-golf at all, at any point in his life; he was just kind of spacey about it. So when Max asked me to take him and Hannah golfing, I figured I’d just take him along this time. “Golf, then ice cream,” I told him. “Yes,” he said.

I was really happy about how good I was at it. It seemed like my lifetime of playing had paid off. I really felt like I knew what I was doing. Max was very good, as well — I think he actually got two holes in one — and Hannah was, too, for a beginner.

What surprised me was how good Nat was, but Dad has always said Nat is a natural athlete. I don’t know how much of a natural golfer Nat is, but he has really improved since his 10-year-old daze. He has his own special move I called the “Nat Sweep,” where he kind of half putted, half dragged the ball into the hole. This may seem a bit like cheating, but I counted each time he lifted the club off the ball, so that Max was satisfied it was not. Actually I don’t know if Max really cared, but I am always trying to be fair to everyone.

Aside from the Nat Sweep, Nat has an excellent mini-golf swing. Where did this come from? And then I realized that his tremendous improvement must be as a result of how often social group plays mini golf! It was good to realize that even though we missed out on the early childhood mini golfing that I was exposed to, my two older sons definitely caught up as teens. Next on the list: get Benji to like playing.

Thursday, July 9, 2009

As Simple — And as Difficult — As Breathing

I had a brief yoga session with a lovely friend about a week ago, and since then I’ve been trying to incorporate the breathing she showed me, periodically during the day. I am new to yoga, having misunderstood it for years, believing that only hard exercise is for me. Yoga, along with most alternative ways of thinking, both attracted and repelled me. Like most of us, I was raised to be fact-based, when actually, there are at least two-other components to our existence: feeling and instinct. Even the therapy I have followed over the years focuses on the mind, particularly the mind in childhood, and how it is formed by experiences that somehow leave an indelible mark on us and control us thereafter. Psychotherapy has told me that I have to struggle to understand these experiences in order to overcome them.

There has been so much struggle in my adult life. Struggle to manage OCD; struggle to become a competent adult; struggle to understand autism and do The Right Thing for Nat and my other sons. Struggle with my appetite.

Lately I’ve been realizing that all is not struggle. There doesn’t have to be this push-and-pull inside of me, or even external to me. Just as I’ve understood that fighting against Nat, trying to beat the autism down, is antithetical to a happy relationship with him, I am understanding that fighting myself is also a negative, punitive way to live. I do not mean I am giving up on helping Nat be his best, and on teaching Nat all sorts of ways to grow and learn and succeed in this world; I have, instead, been letting go of the hatred of not succeeding.

In this same connective way, yoga gives me an immediate, physical way to disengage from negative thoughts. It gives me a way to connect the parts of myself, particularly when I am dancing, so that the dance is not just about correct muscle movement.

So last night I tried to incorporate the breathing with my dance. Here on vacation I take my laptop Twilight Princess into my bedroom and use her music in there. More and more, I dance privately because it just feels uncomfortable around the boys. There are two mirrors in the bedroom, so it’s great for checking any position, and also a wide wooden floor. I have brought one or two bellydance workout outfits, no Egyptian beaded full costumes this time, tho in other years I have brought the golden one. Now I just have black dance pants and two pretty crop tops. Sometimes it feels really good and right wearing the simplest thing I own, rather than the sparkliest. I don’t know why, but I think that those times coincide with my quieter dance sessions, where I do a lot of hand movement and taxim kinds of things (standing mostly still moving basically one body part only), and fewer traveling steps.

It also occurred to me that it was time to try a new level of dance: breathing and smiling the entire time. I feel that I move up and down the levels, most often trying merely to stay lifted and stretched all the way up in posture so as to achieve true torso isolations. Lately, too, my posture has been mostly correct, so I’ve also been trying to layer as well. This takes tremendous concentration of mind and muscle, because while staying straight and tall, shoulders down, etc., you also have to shimmy (Egyptian-style, which is a small movement of just moving knees back and forth until you are going fast enough to have a constant shake) while doing a hip slide, while walking and also hopefully doing something creative with your hands (which also must be completely engaged, invisibly tense and yet soft-looking).

The yoga helps me think of the tension and isolations as concentrations of energy. I envision a small sun-like ball in my hands when making the hand circles, and this helps my hands stay curved and yet fluid, as if gingerly touching something very hot.

Lately it has occurred to me that it doesn’t stop at accurate, beautiful positioning; there is also a connection to your soul. If I view my dance as just another way of “how does my body look now?” then it is just another female way to feel bad. That’s why so many women say they “can’t dance.” They think it is all about how their bodies look, in that simplistic butcher-shop self-hating American way. We are not slabs of meat that must have this much fat content and this much muscle. I’ve been understanding in a new way that I am not divorced from my body. It is not just a thing to look at, apart from my mind.

When I concentrate on feeling energy through breath, I feel the connection of body, dance, mind, Me. Once I feel that, smiling comes naturally.

Tuesday, July 7, 2009


This morning as I saddled up, Max wandered outside, fresh from sleep. “Where ya going?” he asked.
“I think I’m going to First Encounter [the best public bay beach around here] through only back beach roads. Why? Wanna come?”
Yay! Maxie is one of the few bikers in my life who really keeps up with my pace, and what’s more, I don’t get to spend a whole lot of time with him just having fun together.

We set out soon after and took a turn down North Sunken Meadow. This bent around to a dirt road. The woods parted for us and we bumped along, thankful that we had our dirt bikes (Mr. Yamamoto has very thick tires that sing when they go fast enough). I had never been down this path and it was very exciting. We even met a friend from our town, a woman who was on the School Committee the year before me, who also helped me get my recent teaching job (she’s a professor at B.U.).

The road passed by a bay beach, but soon we hit another dirt road that seemed to be going in the wrong direction. It didn’t matter; we doubled back and found our way. I felt high from the scents and the sights, just endless salty-fishy blue-gray water, small dunes and rutted roads of creamy brown sand, and tall itchy grasses.

A few more times of getting lost, going deep into the wood, and through a small meadow. I just couldn’t believe my luck, and being able to ride and ride through these mysterious, uncrowded paths at very crowded Cape Cod.

Eventually we came to a main road, which was not part of the plan. Who should come riding by but Dad. He went exploring with us a bit more, but we simply could not find anything but dead ends. We had to take the main road, which quickly brought us to First Encounter where Mom waited on a bench. We hung out with her for a while, ate a snack, and headed back, a total of 11 1/2 miles. I felt like I had been to Brigadoon, and I want to go back Briga-soon.

Monday, July 6, 2009

Sonny Daze — Just Fine With Me

Nat was particularly energetic this a.m. so I decided to take him on a bike ride prior to my own regular morning ride. I do about 12 miles daily here, riding either on back roads along the bay and the dunes and the woods, or crossing route 6 and riding through the woods to the dunes along the ocean. Sounds like a lot of the same thing but it is actually very different. The bay ride is very yellow and the air is closer; the ocean ride is very pale green and wide open. I choose the route based on how I’m feeling and what I’m in the mood for.

I usually go three-fourths of the route and end up at my parents’ house, where I get some coffee and we sit together on the sunny deck or on the screened-in porch. That’s a comforting interlude for me; hugs, coffee, and laffs, and then back on Mr. Yamamoto (my bike) and home.

I wanted to take Nat over to my parents’ house today, around 3 1/2 miles, and he seemed pretty game. I was struck by how calm and quiet the roads were despite it being a workday for many here. The colors were nursery-fresh: splayed-open pink beach rose and little fingers of yellow and white honeysuckle. Is there anything better than that?

Nat was spacey, however. He seemed unused to the bike, even though he’s been on it before, and he kept riding towards the center line of the street. He also did not appear to be noticing stop signs. So, the whole time, I had to stay within three feet of him and watch him, calling out directions (which he attended to very well). I felt a little bit discouraged for a moment, being confronted so sharply with his disability.

It’s still not a breeze to go bike riding with Nat. I’m not even sure it’s fun. But he’s a darling, and he enjoys so much of what he does. And I do feel proud of how much he can do. So even though I have to be so vigilant when I’m with him, in one way or another, when the road is quiet and safe, and I’m watching his bouncing helmeted head and hearing snippets of self-talk, feeling the warmth on my skin, I just feel overwhelmingly glad to be alive — and to have those moments with him.

Saturday, July 4, 2009

Girl Just Wants To Have Sun

Joyful Beach Stompies is not joyful for everyone…

Not only do I have to get my skin tan, I also have to get it thickened. Although I know in my mind what it is like being with Nat on a crowded beach, I had forgotten how the experience feels. I want to enjoy this week with him in Cape Cod, our favorite place, but other people sometimes prevent that.

We all know it is not polite to stare. Then why do we all do it? Why do parents not even notice their kids being knuckleheads and pointing and giggling at the tall thin young man speaking in an unknown language, stomping hard and chanting, bent over and laughing, somewhat like Rumpelstilskin?

Why is it sometimes the parents themselves who are guilty? How is it that one in 150 people are somewhere on the autism spectrum, and yet so few of the people on our beach recognize it?

Maybe they’re scared that Nat will somehow hurt them or do something horrifying. I don’t know how to reassure them. Today I tried just plain asserting the truth. Two women, a daughter and her mom I believe, where doing the looking, staring, whispering, looking again, meaningful/idiotic shared stare. So I went up to them and I said, “It’s just autism. Don’t worry.”
They looked annoyed at me. Was I wrong to assume what they had been up to? At very least they should not have been staring at Nat so frequently.

I had forgotten how torn my attention could be at the beach, between enjoying myself with my boys, and noticing people staring at Nat doing his Stompies. Why can’t people just deal with it?

Because it is quite a thing to see. I know that. Yes, it is how he expresses joy, but it is so intrusive to everyone else. He walks in a large circuit, painfully close to other people’s blankets. He waves his fists and yells out his stuff. No one else is doing that. All I can do is tell him to do it more quietly, and tell the others to stop looking. I have to be the Policeman of the Beach. And all I want to do is have sun. With son(s).

Friday, July 3, 2009

All Together Now

Nat always spots me long before anyone else does. At airports, when they come to pick me up, he catches my eye, smiles, and looks away, just like when he was Baby Delight, way back when. He sees me, and that’s all he needs. Once when we were still living in Arlington, I drove to an appointment in Brookline, and Ned and Baby Nat came into Brookline to meet me there. I remember walking down the street and spotting them at the corner of Beacon and Centre; Nat was riding on Ned’s shoulders. Nat’s face split into a big grin when he saw me walking towards him; his delight was openly apparent. It is one of my favorite Baby Nat memories and it reminds me that we always did have a connection, even though it was not usually as easily felt as it was on that day.

Today, to begin our vacation, we decided to take two cars to the Cape so that we had more room for food; I hate shopping at the Orleans Stop&Shop; the very first day we arrive. This time, I have my kitchen on wheels. My car was full to the brim, but at least we did not need that stupid carrier on top. Ned’s car was full of all of our technology and the swimgear. He put the bikes on my car and then went to get Nat, so I would not see Nat until we got there, and it had been a whole week.

So while Ned picked up Nat from his school, I headed down with Max and Ben. The traffic was horrendous getting out of Boston, of course. Here we had the first sunny day in like 6 weeks, give or take a few anemic sunny days here and there; we had a Friday afternoon; we had the 3d of July; we had a lane drop at Weymouth; and, we had Cape Cod just an hour or so from Boston. A perfect storm of traffic.

It was fun riding with the two of them. Max did not use his cell phone, his iPod Touch, or listen to music the entire time. He sat up front and dozed or talked to me. We talked about Jack Johnson and Tally Hall, his favorite musicians. He made me CDs of their stuff for Mother’s Day, and that’s what we listened to. B, on the other hand, was all grins as he stuck his face out the window into the hot wind caused by the moving car. He was actually giggling.

Ned and I stayed in contact with occasional cell phone calls. It was apparent pretty quickly that Benj was going to need some food; I guess he didn’t like the PBJ I’d made him. How can that B?
Those sandwiches are insanely delicious. Strawberry preserves are rubies from heaven.

I told Ned I was stopping at the totem pole rest area (the one at Plymouth). We pulled in and staggered out of the car (that’s what 45 minutes of a Boston traffic jam will do to you; it is nothing like a strawberry jam). I was so out of it I could barely ask for a nonfat latte. Max got a Big Mac, having never had one before, and B had his usual 6 piece chix Mighty Meal with Ice Age toy that he was bound to hate.

No sign yet of Nat and Ned. Just as I thought that, I was walking past the food counter when I spotted Ned. Right behind him was Nat. Ned did not see me across the distance and the people, but Nat did, right away. And there it was, that same brilliant smile of recognition that made my heart leap. The family was reunited, and our vacation had officially started.

Wednesday, July 1, 2009

Given You Children, Milked the Cow

After 25 years,
It’s nice to know.
— Fiddler on the Roof

We had a great day, things like hanging out on the porch with sweatshirts and the rain coming down all around us. We saw a rabbit taking shelter under the lawn chair. Later on, the sun came out and we went out to dinner at a lovely new French place in the South End called Gaslight, and we stuffed ourselves. The waiter brought us two glasses of champagne, on the house. After dinner we drove to Back Bay and had ice cream.

Max took pictures just before we went out. Benji was taken to the movies and out to dinner with a friend. Max held down the fort, and even talked to Nat tonight on the phone when he called. The thought of that just makes me melt. A great day. A great quarter century.

It Takes a Family

We were married on a rainy day
The sky was yellow and the grass was gray.
–Paul Simon

There is a legend out there that says that the divorce rate in marriages dealing with autism is higher than the national number of 1 in 2. I believe it is still unproven.
Is there any data out there on the Herculean strength and enduring love in autism marriages and in the typical autism family?

When I was a girl, my dad said that he was willing to foot the bill for “college and a wedding,” and after that, we were on our own. In fact, I had to contribute a healthy chunk of my college tuition by working as a waitress every summer and with student loans to the max, but the fact is, Mom and Dad did manage to pay for the bulk of it — on teachers’ salaries.

This was 1984, before brides spent $75,000 on average for their weddings. Sure, my dress was a satin beauty from Bergdorf’s in Manhattan, but it was the one my mom had worn, in 1958. To fit into its retro silhouette, I had to buy a corset, but Victoria’s Secret, a fairly new store at the time, only sold one kind. It wasn’t even white! We had to tailor the dress in numerous ways, and I even had to use a button-covering tool to replace buttons that had fallen off.

Even though at 21 I was almost the youngest of all of the cousins in my extended family, mine was the first wedding of our families for this generation. There had only been bar and bat mitzvahs and funerals up until then, for years and years. No one knew from weddings. My mother sought the advice of my grandmother (whom we called Mama). Mom did not seek much advice from the bride herself. Dream wedding? Wake up!

The more serious aspects of the wedding were completely out of my hands. It was to be a Jewish wedding, which I knew nothing about, other than what I’d seen in Fiddler on the Roof – complete with chuppa, plain gold wedding bands, face-covering veil, and stepping on a wineglass. I remember all the discussions we had about food, flowers, and guests. I had wanted everything to be red: red flowers, red bridesmaids dresses, but they had felt that was too “hot” for July. We settled on pale pink. I had wanted little pizza hors d’oeuvres, but they felt that was tacky. The only thing that I really really pushed for was to have the top of the wedding cake be chocolate and coconut, because that is what Ned and I loved, and the plan was to save the top in the freezer, and eat it on our first year anniversary.

Two days before my wedding my grandfather died. This was sudden and devastating. I thought we would postpone the wedding, but in Jewish tradition, you never put off a blessing for anything, and so we proceeded with it. I don’t know how Dad managed that day, grieving for his father while giving away his daughter, but he did it all somehow, with every bit of his usual flair, and only my practiced eye could detect the deepened crease running down his forehead. When he and my uncles hoisted me up in a chair and danced around with me, I was afraid I’d fall; but I didn’t. Before I knew it, Mom, Dad, and Mama were kissing me goodbye, and then I was on my honeymoon in Italy with Ned Batchelder, my new husband.

For years after my wedding I still dreamed about magazine-style weddings, where everything is perfect, and what I should have done instead, like have the red flowers and little pizzas and a modern wedding gown and a wedding by the sea, not in a synagogue. But now I hear so much about the weddings of today, the bridezillas and the couples who spend it all to have it all. Yet there is still a 1 in 2 divorce rate. Recently it dawned on me that Mom, Dad, and Mama were probably trying to keep that from happening to me. In doing what they did, they taught me about compromise, negotiation, and listening to your elders. I learned about tradition and family. Perhaps this was where I got the strong foundation that helped me embrace whatever else life gave me. Learn more about the author here.

We never did manage to choke down that bit of freezer-burned wedding cake, though we tried, while sitting in bed in a Cape Cod motel on our first anniversary. But today, July 1st, we have made it to our 25th wedding anniversary. We have made it through the panoply of life’s possible and challenging events: deaths, births, autism, adolescence, career changes, mid-life crises.

I think we could only have gotten here because we were carried there on the shoulders of giants.