Susan Senator

Nat’s teacher sent these two pictures today, (left) attached to a card that Nat had made, which I scanned in to the right. The pictures are from the talent show that the school had, back in August. In the first, Nat is singing into a microphone “Life is a Highway.” Don’t you wish you could hear his lovely voice? Below that, he is playing “For He’s a Jolly Good Fellow” with his teacher, Annie (a total gem).

That was such a great day.

I am hoping that this vacation there will be lots of days like that. So I have tried to plan out the days, as best as I can (plan-avoider that I am), and I made a special vacation calendar for Nat. I hope this makes him more comfortable, just seeing the familiar structure tools and the number of desirable activities we’ve arranged for him. Wish us luck! Me and my Sweet Guy and all my darlings are starting our vacation. Hopefully you are, too. Health and happiness to you all. Love, me

A terrible outburst, with aggression and self-injurious behavior. A totally beaten-down feeling, a weak evil ghost whispering, “you thought all was well…”

A minor blip, some will say. Not enough routine, others will say. Wintertime blahs.

Whatever it was, there is sad wintry gloom everywhere. Max is sick. Ben ran hiding into his room and I have that old familiar nauseous dread and a bloody hand. Ned is getting into the snowy car to take Nat back and I am going to go to bed.

Chanukah officially starts Sunday night, but in my house it is starting tonight! Two reasons: 1) Nat is coming home and 2) Mom and Dad are visiting and 3) I really feel like making latkes. (Max told me he looks forward to them all year! So there is a huge bowl of huge potatoes sitting on the counter, ready to be scraped. Nat also loves my latkes so, it will be a very satisfying dinner to cook.)
Oh, sorry, that was three reasons.

We are also expecting an S-load of snow, the first big one of the season. We’ve already had a few dustings, just enough to make the yard look like a big pfefferneuse cookie. But this one has all the superintendents freaked, so all the schools seem to be closing early. My parents are already on their way, so scared are they of the big snowfall, oy vey oy vey.

I have presents for a few days. There’s some very clever things I’ve bought for the boys, I must say. I am so psyched to present some of those presents. I got Nat some great music (Dumbo soundtrack!) and The Fox and the Hound, an old Disney he does not have! Also, it’s on video (he hates the new technologies, just like his father). I can’t say what I got for Max for who knows who may be reading. Benj, I got a really funny tee shirt and some other stuff. I got Ned hmm hmm hmm and also hmm hmm.

I’m also making brisket; got a huge hunk of bloody meat in the fridge. Gotta make something different for Dad and Hannah who won’t eat meat.

That’s all for now.

O vision in lycra and white
Not to loose and not too tight
Your bits of gold placed oh so right
You make me enjoy a winter night.

I am suddenly just in the best of moods. No surprise, probably. This just happens to me, it is the way I’m engineered. I totally understand the chemistry now. I also understand that I am really looking forward to the next few weeks, so it is a very real boost. Anyway, I’m just going to enjoy it while it lasts.

So, with Ned’s agreement, I bought myself something I have not bought in a very very long time: this new cossie. This is because I am getting more and more comfortable with the idea of dancing for others (friends and family, that is), and I need to have a costume that I am comfortable wearing.

Last night I danced for about 40 minutes, and experimented with some new stuff, new things to try for tempo change. Instead of doing all traveling steps (mostly the classic Egyptian hip-lift), I tried simply choo-chooing a bit and also maya-ing down slowly and then reverse mayas quickly upward. The sudden tempo change and reverse movement is very interesting, and it is all while standing in one place, but incorporates a level change (0n the vertical plane), which has been a goal of mine. Another thing I have been practicing is the hip bump where you wrap one hand across your face, and wrap the other across your hip and as you bump outwards you make it look like your hand forced the bump. Very cute. And also, my hand movements are getting to be more artful, with the right amount of tension in the palms.

So I feel very accomplished and excited about the growth. A new costume is the reward. All my other costumes are too much like wearing a bikini. That’s fine, but sometimes you just want more coverage. This is an Egyptian-style dress, and it is simple and very Cleopatra-like; also kind of Grecian. I will get a regal purple silk veil and gold cuffs and headband to go with it. It’s time to look like a queen, rather than a princess. I think I’ve earned it.

My latest column for the Brookline Tab is about my winter inertia. It is also about Nat coming home for December 23-January 5. I am so psyched for that. Of course, nervous too. But not dreading. Honestly, I used to dread those long vacations with him. I never knew what I was supposed to do. Was it okay to let him lie around, watch Disney, suck his thumb, and talk to himself? Wasn’t I supposed to create schedules — and follow them?! I am famous for making beautiful structured plans and then, well, it ends up happening but not at all the way I had laid it out. Poor Nat! If he is supposed to need/crave structure, he got born to the wrong Mommy!

I say that because I secretly (well, not anymore!) believe that it is not that simple. Nat is not that uncomplicated. Sometimes he does so well with structure; other times, he leaps up with joy at the sudden change in plans. Which usually comes from me. The rest of my family is much more — how to say it with love — tree appendages mired in moraine — and I, well, I am more on the changeable, mercurial, “moody” end of the spectrum.

That is what I hate about diagnosis. It reduces people. As the Latin phrase goes, that is an absurd practice. People are so multifaceted, we don’t even know what goes on inside the other 90% of our brains (this may be an urban legend, according to Ned, but it suits my purposes, so…) The truth is there, nevertheless, give or take a percentage point. You see where I’m going with this.

I just hate the rules. “He needs structure.” “He needs consistency.”

“You have to let him go.” Well you have to shut up.

I am no martyr, so I had to do something about it. Something had to give. No more Mrs. Doormat. No one’s putting their shoes on me, or throwing their shoes at me. This Libra is going to take a page from Taurus, and get tough and stubborn. What am I talking about? My jobs. Both of my teaching jobs have to have some adjustments, to alleviate stress.

And so, the solution I came up with is to offer two Baby Belly classes, one on Tuesday and one on Wednesday. The Tuesday group will be K-1st grade; the Wednesday will be 2nd-4th. Both classes will be half an hour, no longer an hour. Snacks will be provided at the beginning of class.

Maybe I’ll have the girls earn their hipscarves, or I’ll have a rule where if it falls off, it’s off, and no one is allowed to change veil color or hipscarve in any given class.

We’ll have ten minutes for snack and 20 minutes for instruction. No running around. Everyone has to stand in a circle, the whole time. And, I’ll have to figure out how to get the little ones to understand what the heck the class is about. Probably no recital for the little ones; it is just too hard.

Also, an 8-girl limit. No exceptions.

And as for my English 102 class next semester, I will count participation much higher this time. I will make the essays count evenly, and not make one more important than the next. I will make a strict rule against interruptions, and against the use of any technological devices: no cells, Blackberries, or laptops out — except for taking notes. All work must be handed in on time, and for each day late you lose half a grade. No exceptions, even with illness. Email me the thing, but don’t bring it in late with a doctor’s note.

I have agreed to switch to MWF at 12, rather than TTh at 10, and I was deemed an “angel” because I agreed to it.

Angel or Martyr? Sinner or Saint? Or just me, the girl who cain’t say “no.” Well Ado Annie might be turning into Annie Oakley, so watch out.

I’m going to try to sum up the Recital, but I am exhausted, so bear with me.

I got to the school 40 minutes early so that I could decorate the stage. I had my Halloween lights and many, many (freshly washed at a hot temp and dried on medium) veils. I was wearing my black dance pants (low rise yoga-style stretchy with wide flared bottoms)a black tank top and a black lace shawl + my emerald green Nourhan Sharif triangular hip scarf around my hips. I wanted to be in the spirit of bellydance performance, but I did not want to take attention away from the troupe, so this was my compromise costume. Favorite deep pink silk veil.

I stood on the risers that were left over from the Kindergarten concert this morning (I pushed them against the walls out of the way of my girls) to hang the lights and to swag the hot pink, shiny blue, and emerald green veils. Played with the curtains, figuring out which way to pull the ropes. I tested the boom box. I borrowed a bit of scenery I found backstage (a fireplace and some pewter ewers) and arranged them in the center back. It looked like the Casbah meets Barbie’s castle: perfect.

The girls poured in like a burst dam. There were twelve total. I tried to corral them onto the stage, but they kept running off, greeting friends and relatives who had come early. We went through the number once and then the younger ones got all loony again. One little one needed my help putting on her special costume without messing up her updo. Another one was telling me her knee hurt. Another kept running off stage looking for her dad, who was supposed to show up for the performance. I noticed that the oldest girls were getting annoyed, which had never happened this semester (last year there was one older girl that wanted more out of the class, as well). Several of the younger ones kept yelling, “Can we have snack?” at me but apparently they had not gotten the memo. “There is no snack,” I told them. “I thought others would bring it.” Wailing.

One of the youngests’s mom brought cookies and juice but it was too late to hand it out. The three older girls kept pleading with me to control the others. I tried and tried, but I could not do what they wanted. One of them started to cry — moments before the curtain was to open. I got her mother to come up on stage and be with her, but then, another one was crying. I got her mother up on stage as well.

Meanwhile the younger ones were running wild. We only managed to practice one more time before the showtime was upon us. The dad was not there. The girls had kind of calmed down. “Daddy!” I heard. “Daddy!” went a loving tender voice from my toughest kid. Daddy had arrived.

I yelled them into a semi-circle and went out in front of the closed curtains to announce the show to the parents. Opened the curtain and put on the music.

The girls were splendid. I had to say, “That’s it,” to let the parents know it was done, because if you blinked, you would miss it (it’s a very short song). We were asked for an encore and we did it again. Each time I was off to the side, only venturing on stage when it looked like one would fall off or another was looking for me to see what to do next. “Now can we have snack?” several screamed.

“Yes–” I started to say, but then the PTO president reminded us of our gig for the faculty, in the cafeteria. The PTO president has four kids under 9, so she was able to hustle us over to the cafeteria in minutes. She was like a Major General. I said to her, “It must be the fourth kid.”

The cafeteria was packed with all the teachers, staff, every person who works for that school. Then all the parents tumbled in as well. There was an L-shaped space in which to perform, and I wasn’t sure how we’d do in that strange configuration. I motioned to them how to stand, introduced them, and began.

This one was the best yet. Still, I had to say, “That’s it,” so that everyone knew to applaud. Even though the finish was so dramatic (head rolls and then, throw your head back and look way up and freeze). But maybe I was the only one who did it that way? I will never know because, well, my head was rolling at the time.

They finally got to eat their snack. One of them came up to me and hugged me. Another gave me fudge and her dad took a picture of us. Another couple hugged me and asked about next semester. I don’t know, I don’t know! So so so tired.

And what have you learned, Dorothy?

Well, first of all, if I ever go looking for my heart’s desire again…

No, no, not that! I learned 1) perhaps I need to do two separate numbers, one for the youngest girls (something in a circle, with veils and running); and one for the oldest girls to showcase their skills. And 2) have snack at the very beginning.

Went to two parties last night, and by the time I got into bed I realized I had talked about Nat’s move-out so many times, it felt like a more legitimate thing we had done. The first party was my favorite one of the year, in our old neighborhood, filled with people I’ve known for years. The woman who hosts it is the one whose porch I ran away to, way back when I almost left (because 7-year-old Nat’s sleep disturbances were more than I could bear). Susan talked me through it and told me a thing or two about her struggles as a mom, and shored me up so that I could go back home and live in my life.

So last night there were all these friends who had not heard that Nat was at the House and they truly got it. I got a lot of hugs, but also a lot of expressions of joy, because people were feeling that Nat was really on his way to a very rich adulthood. They were so proud that he was working two jobs, running road races, going off with friends, and transitioning back and forth, home-House-school, so smoothly.

They would not have those positive responses if I had not also been conveying positive energy, despite my creased forehead and wet eyes. It’s funny how like Nat sometimes going home is not at all about going to where you live.

Things read at 4 p.m.
From Terese, Nat’s teacher:
‘Funniest thing happened in gym today. Alan played a trick on us. Alan had the entire class start off with running, once everyone lined up he said “ready, set……..” but never said go and everyone went off. He made everyone come back and start off again. He does this to us about once a week. Alan, being Alan did it again “ready, set….” but never said go…. well Nat whispered Go loud enough for the student next to him to hear it and it sent the other student running across the gym, Nat stayed on the black line waiting, cracking up (so appropriate). I was dying laughing because Nat totally pranked another student.’

Things heard at 4 p.m.

Deep honk of horn

“Gray bag, gray bag” (gray overnight bag forgotten at school)

“Hou-ew-se” (house)

“Mah-ee” (Mommy)

“Ny-yat” (Nat)

“O-Byee-en” (Ben)

Things felt at 4 p.m.

Hot sandpapery cheek

Big muscular frame slumped into my arms

Excited heartbeat

Things smelled at 4 p.m.

Pumpkin ice cream

Unfamiliar aftershave

Things tasted at 4 p.m.

Pumpkin ice cream

Things seen at 4 p.m.

Darling

Joyful House Stompies

I got a phone call from the principal today, asking if the Baby Bellies would come down the hall to the cafeteria on Tuesday afternoon, where there will be a PTO/staff luncheon. They needed entertainment! So this means we have our first real gig!!!

A gig means we must now have a dignified name. “Baby Bellies” is just not going to fly — er, dance — with my kiddos. So I made a quick call to my gorgeous, wonderful Lebanese friend from the Middle East Restaurant in Cambridge and he gave me some suggestions for our troupe name. Together we came up with: Raqs Layali al Lincoln (Nights of the Dance at Lincoln). I gotta think some more about this…

All the world is a stage.
–Shakespeare

I had a great idea for the set design for the Baby Bellies Recital on Tuesday, so I’m still here instead of at the gym. So my idea is to use tiny Christmas lights (left over from our Halloween decorations) and create pyramid shapes or Arabesques against the back of the stage. Then I will take four veils and pin them in a tent shape in and around the lights. I heard from the office secretary that there will be some scenery left over from a morning Christmas concert at the school, so I will incorporate that stuff as well, unless it is horrendous.

I might have to ask the custodians to help me pin things up. I hope I can sweet talk them into it, or at least lending me a ladder.

I have made a little sketch to guide me, and here
it is:

...I’m especially mad at stupid jumpropes. –Lucy Van Pelt

My sadness converted to rage today. I don’t know why. If depression is anger turned inwards, then anger is sadness stripped of its piteous garb. Which comes first? I was driving around honking and shouting (inside the car). Everyone was making me mad. I called no one back, except my sister. I wanted to delete my entire blog, or write a totally angry post. Sometimes when I feel that way I just have Ned take it down for a while, so that you’ll get NOT FOUND when you click on me. Sometimes it makes me feel childishly happy to thwart people that way.

You see why I needed to get out of my cage. In an effort to expel some of the poison, I did a drenching workout, 3 miles on the stairmaster, (how do you climb three miles of stairs?) which actually also made me mad because the woman next to me was singing and her headphones were loud so that I could barely hear Saad or Natacha. Stop being so happy, I kept thinking. I kept turning and looking pointedly at her but she did not stop. I lifted weights, looking in the unflattering mirror and hating the way my muscles looked. I wanted to punish my fat gut so I did so many harsh uphill crunches that my abs actually hurt, like they were pinched. But after hottub and a long hot shower I had a deep tissue massage with the woman who once gave Nat a session of cranial-sacral therapy, and that is when the day started to turn around.

I really wanted to spend time with her because I knew she would not ask me anything when I told her about Nat leaving, but would just say, “that’s a very big thing,” (which she did). I loved the way she had me exhale deeply before she began. The almost-pain/pretty much pain was exactly what I needed. I think I fell asleep a couple of times because I suddenly heard myself snore.

It was the first time my body felt good in days.

The House called today to tell me that Nat was sick last night! He stayed home all day. I wondered about coming to get him. Ned said that Nat would probably not be comfortable riding around, plus with the rain and all. And of course that’s not how it’s done. The House is supposed to be his home now. They’ll take care of him. They gave him some soup and some ginger ale.

That is kind of what I’d do. Plus a lot of hovering and feeling his forehead to judge fever intensity. Asking him, “Sweet Guy, you okay? How do you feel?” Kisses all around.

I’ve been thinking a lot about this whole thing, as you know. I think one of the problems here is that I have not committed to the idea. In my heart, I don’t want him to be there. I don’t want this to have to be the better choice, thinking of his future. And the reason I thought this was for his future was that a) I thought the House would give him a fuller life, with other kids around playing games going out to events; b) important independent living skills, like cooking, doing the food shopping, doing his own laundry; c) the experience of depending on people other than us, because he must learn how to communicate his needs to people who do not intuit them the way we do here; d) to get him on the radar screen for State services; e) relief for our family in terms of stressful encounters with aggression, screaming, etc. Presumably he would feel relief in this way as well because the House is more structured; he has more of a schedule to his day, and he operates smoothly with schedules, unlike the way I am impulsive and impetuous.

And yet, I could counter every single one of those pro’s with con’s. A) as for a fuller life, his interactions with the other kids may be fairly limited because communication is difficult for all of them. I guess he enjoys puzzles and games like Connect 4 but — when he plays those with me he seems spacey and disengaged. If he is spacey during a game of Connect 4, would the House staff still “count” that as “playing,” and report to me that he played Connect 4 with a peer? B) Important Daily Living Skills… well, he was learning those here, too. I was doing laundry with him. Sure, we did not get to the level he’s on now (folding beautifully), but we were getting there. Food shopping: again, he would go willingly but I did not know how to get him to figure out where things were. I think the House staff is doing that with him… C) Depending on others. Well — I don’t know if he knows how to get the affection he needs from Others. I don’t know if he’s formed any attachments to the others in the House. The staff are not allowed to mention other kids’ names to me, so I don’t know who he chooses to play with. I don’t know which staff he does better with, because the assumption at his school is that all staff are trained the same, and therefore, there is no difference in interaction. I have always felt this was bullshit. (Why did no one call me last night when he was sick? Why did I get a call at 2 pm, rather than in the morning?) D) State services. The fucking State. The lack of resources. The need for families like yours and mine to actually compete for the funding, the housing, the personal care attendants, the jobs.

But — here’s what I’ve been thinking. Why does Nat have to live somewhere else, even the rest of his life? Why can’t he live here or nearby in an apartment with a live-in personal care attendant and a friend? Oh, sure, monitoring PCA’s is a lot of work, and hiring good people is difficult, but — how much control do I have over who is hired in the Housing where he’ll live?

Why can’t we have respite just by having a PCA? Someone who would take him to work, where he would have a job coach? Or to a continuing education program? Is Housing the answer to everything? I want to work on a solution that makes me happier. I don’t want to have to be dependent on others. And if I do, isn’t it better that they be under my own roof?

…E) Stress on the family. Now there’s the rub. I can’t say what I’m feeling here. I just hate what I’m feeling here in terms of the wellbeing of the entire family, the need for the other children in my family to be free of fear, injury, to have my full undivided attention, etc…

But Nat needs me, too. And I need him! The main way we communicate (in the past and when he’s here) is through simply being together, feeling each other’s presence. Sometimes I kiss his cheek. Sometimes we cook together.

Talking on the phone is the primary mode now. It is distinctly dissatisfying. Talking is not Nat’s thing, it just is not. So the conversations are a bit rote. He is certainly listening, but I don’t know how he’s feeling because I can’t see his face, or check in with him just by looking at him.

I guess the concern is also about when we are too old — then what? I can’t designate Nat’s care to his brothers. Maybe, but — can’t say more about that, either. Can I not think about that one just yet? Isn’t it enough for me to plan for the next 5 -10 years? How do I even know what Nat will be like in 20 years? If I see how he’s changed (Improved) in the last six years, it is awesome. Even the last two years. So …

I guess the thing is to somehow have enough money to have choices? Or you have to be very clever with agencies that are out there? But can’t I worry about that even in 5 years? Will he be so deprived of funding, simply because we chose to keep him home with us while he attends school?

I have been saying to Ned for so long that I want to make an apartment out of the basement (which is actually completely above ground, with big windows, and has enough space for a small bedroom and a living space, a pantry kitchen (the Silence of the Lambs room in the back), and there already is a very primitive bathroom (primitive is a euphemism; this house is 130 years old). If we had an apartment there, it could be like a “halfway house,” a kind of compromise for Nat’s independence. We could probably fit a live-in person down there in the living space (a couple of luxury sofas, dining table, something like that) along with Nat, who could assist him in independent living and get him to work, or wherever. But he would still be around a lot more.

Ned has resisted this, not only because of the money, but because he doesn’t see the point. “Why not just have him live in his room?” he asks. But that would be too much living here. That would seem dead-end-ish. More of the same. But if he had his own space to keep clean, an in-law apartment, with cabinets to stock, meals to cook, wouldn’t that be more of a realistic adult scenario?

And it would not be forever. It would be for the remainder of his school years. It would give family members the space they need, but it would keep him near me. And once he seems more ready, we could rent him an apartment with a friend and a live-in, sharing the live-in between the two of them. Again, we could come and go as we please and he could be nearer to us. Maybe he could work in town, at the library or something like that. I’d have a lot of legwork to do, but — couldn’t I manage that?!

This dilemma of mine reminds me of so many of his school years where I fantasized about homeschooling him. How I wanted to be able to do that! To give him the best of care: mine. But Ned always felt that I was not cut out to be that kind of manager. Maybe he was right. I have felt happy about his education, especially where he’s been for the past seven years.

But this housing thing. I feel too unsure about it, too often. I feel I need more control over his life. I feel that there must be a halfway point, between living here all the time and languishing, and living there and — well, I don’t know. Sometimes it feels like it’s not what I expected it to be. Is this about getting used to things? But why should I
have to do that? I’ve always solved Nat’s problems myself. For better or worse.

Shoot. One of the Baby Bellies today said she “might” have lice. I did not let her trade veils today (which they always always do). She was so subdued, poor thing. She is usually just a total bubble of a person, a firecracker, a butterfly. I don’t know if she was worried or if she picked up on my worry? I’ve always dreaded the lice thing, though so far, none of the boys has had it, knock wood.

She must not have been too disheartened by it because she did keep interrupting me as usual to say things like, “Let’s be like Cinderella and…” or “Can we wear lipstick to the show?” I tried not to get too crabby (like, I didn’t say, “How ’bout we wear fat little white parasitic insects on our heads?”) It is like herding cats with the BBs, and next week is our show. A lot of pressure. I even talked to our local newspaper, The Brookline Tab, for coverage, but of course it is not pressing news (probably there will be someone in Brookline who thinks there is an ugly sign somewhere in town, or who thinks the Town should not collect our trash, or some other Very Important Grown Up News Item, so no wonder kindergartners – second graders learning Middle Eastern dance in the schools would be a lesser priority).

Maybe we’d get in the paper if all ten of them caught lice from the veils?

Anyway, I panicked at first when I got home and dumped all the veils into a cold wash (cold because they’re delicate). Now I don’t know what to do and I’m a little nervous about the whole thing. I hope my veils are not ruined, but they are kind of cheap anyway. But this is not going to level me. Some people use lice as a license to ostracize or panic, but I will not.

Regardless, the show will go on, even if we have to use paper towel for our veils.

Choreography for Baby Bellies Recital, Tuesday, 12/16, 3 pm. Auditorium

String Intro: Turn veils around oneself in the “wind” pattern.
Drums come in: Hip slide right left. Hip slide right left.
Violins come back: Big hip circle

Saidi Rhythm: Hip lifts in place
Clarinet: Snake arms holding veil (4 each), jump 1/4 turn right. Repeat until you have completed a circle.

Fast strings: Shimmies and hip bumps, 2 to each side

Airy flute: 2 complete Flat Hip Figure 8’s (hip movement parallel to floor) while folding veil.
Flute and drums: With veil folded into the “pocket,” camel (full body wave and walk) your way towards the center of the circle, then out.

Sharp drum: lift veil high over head

Fast strings: grapevine to left in a circle, one way, then the other way, two times each with veil aloft behind you

4 staccato beats: hip bump
4 staccato beats: hip bump
2 beats: hip bump
2 beats: hip bump

Fast strings: shoulder rolls, end with 3 head rolls.

We went as a family of four to New York for the weekend, building a trip around Ned’s grandmother’s memorial service. I have not put in photos of Grandma O’s service. Instead I have made a Tabblo of our time on a small vacation as just four of us. I had a good time, as you can see, but I did feel that Nat really should have come. There was no reason to leave him at the House. Originally we did that so that he could still go to Social Group Friday night (when we had to leave for NYC), but there was some kind of screw-up and he did not end up going to Social Group!! 🙁

I have been having a very rough time with my grief. I write post after post and I do not publish them for some reason. I just can’t at this time. Suffice it to say that this move-out of Nat’s feels like an amputation. I am talking to Ned about what to do about this, what we might be able to adjust so that it would not feel as raw to me.

Anyway, here are pictures of our weekend, the high points of just walking around, Tribeca to Uptown, eating and observing with (most of) my darlings.

These days remind me a bit of 1993, when I was dealing with Nat’s diagnosis. Nat was just three, and Max was almost one, and I had a job to do raising my little boys, but — . I had to learn all about autism, in a time when there was not much around to tell you. There were no yahoo groups, no blogs, no Internet supports or info. There were very few books, most people still thought autism was a rare occurrence, and most important of all: there was no one else in my life (apparently) who had it or whose kid had it.

I’m functioning but there’s also a part of me that’s loose and unsettled, unresolved. I worry so much about Nat. I worry that he’s sad. I worry that he doesn’t understand why he’s there, but that the aggression lately is because he is beginning to realize what it is. Does he think I’ve abandoned him?

Back then I had a sheaf of papers from the Autism Support Center in Danvers, which I had found in the phone book, by calling (of all things) 1-800-1Autism or something like that. The papers talked about how autism was a neurological condition, probably genetic, not my fault, and how it came in many different forms, but mostly was all about having some of three groups of issues. The papers also talked about how education would help, and what groups were in my area to offer support.

The best thing in years was going to that local ARC support group in Brighton, Mass., where I met parents of kids of all ages, and learned that Nat was not alone.

So now, the thing is, I know he’s not alone, and yet, I feel so sad for him living away from me, from his beloved house, his pale green bedroom, his sunny bay window, his bright-colored paper dragon that Mom brought him from China, the large oil painting that his first tutor had done of him, sucking his thumb (of course) and holding Floppy Bunny. His lunchbox, his afterschool snack.

My boys are growing up and right now it hurts hurts hurts.

I don’t have a group to go to. Maybe I do but I don’t want to. I don’t get much solace in groups, or other blogs, or books on autism. Ironic. But there it is. I am just in it, and that’s all. There’s not much to learn, there’s only to do.

I feel so bad about how I didn’t prepare him adequately for leaving. I did not even prepare myself adequately. I couldn’t have known what this would be like. I imagined it all very pragmatically, the way the House would be able to train him in this or that skill. The way he’d come home whenever I wanted him to. The way we would have less stress in our lives, yes, that is true, too. I would cry about this now but I am exhausted at the moment. I’m sick of crying, I’m sick of going to bed early and I’m sick of grief.

Everytime I write what it is that makes me so sad, I feel empty and like I wrote the wrong thing. This sadness I feel around Nat is a moving target, ever-shifting, and non-specific. This tells me that it is grief, pure and harsh. Ugly and complicated. Inevitable and inexorable.

He is 19 but he also seems much younger. I don’t know for sure what he understands, how he feels. He sounds sad on the phone. They tell me he’s not. I don’t know, I don’t know. It’s that I don’t know for sure, never have. I did not really get the chance to know, and now he’s moved out.

This is grief, this is what it looks like and feels like. I was okay for September and October, and then I got distracted in November, and then, when I pulled away from distractions, It faced me square in the face. I had delayed my pain by lighthearted distraction and now, here it is.

Some of you will think that I’m wallowing. Well, think it. But I don’t want to hear it. That won’t help.

Some of you will tell me that this is a natural phase of life. That at 18 kids leave home. That Nat may have wanted to leave, hence the aggression.

Don’t tell me that anymore, I don’t want to hear it.

Truthfully, it is going to be hard for anyone to tell me anything. This is as bad as 1993, the diagnosis year. This is the Letting Go year. It is more like ripping out.

Nat may be 19, but he is also not 19. I don’t know for sure what his inner life is, but I do know that he is living somewhere else other than my home, and I always swore I would never ever send him away and I did.

Not only that, I sent him away without preparing him right. He had a social story, but he did not have enough time to really memorize it, for it to sink in. Because if he had, he would have probably become anxious. I didn’t want him to become anxious. I didn’t want that for him, but I also didn’t want that for me. I could not bear another phase of fear, and worry about unpredictable rage. Arm-biting, screaming. Being stuck in our house.

I can’t talk or write this away, but I feel compelled to get it out anyway.

I have just had a weekend away with Ned, Max and Ben. We were in New York just rambling around. We floated from thing to thing. It was easy, so easy. It was too easy. I felt Nat, I kept thinking about Nat. We are five, not four! We are kind of pretending to be four.

But I also had fun! I did not always think of Nat! I had so much fun.
And the other two need to have this kind of lovely time. Why does it have to be this way?

What the hell kind of life is it that children are born to us and we cannot help them? Is it really just all random, the way Ned and Max believe? What about what I believe? I believe in God. I believe that life is wonderful, sweet, colorful, musical. What about the five senses? And delphiniums? And Beethoven, Eric Clapton, and Natacha Atlas? What about M&Ms;, or getting well again after a sickness. What about making love? The first time you see your baby?

He is my baby. He is a man, but he is mine and he is not ready to go. I am not ready for him to go, I am not ready to be this old. But I feel like this is the better of two choices. In this world, you have to set up your child as best you can for the future. Even for the present, or because you know how the past went.

When you let go, to me it feels like abandonment. So I am grieving for that.

I don’t know how others bear
The pressure of a breaking heart
The way it was soft full and ready
It was so big
You think it can hold it all
But it can’t.
It breaks. It turns into shards
That float in your blood
like oil on the sea, killing
Only a matter of time
Before you drown in it. Or others do.
Charybdis roars and whips
Centrifugal, Centrifutile
And he’s already gone
A riptide of time and nerve cells
That clumped and didn’t branch
A limp limbic that could not swim
I stand on the shore
Not supposed to go in
Hope that there’s a boat
Or even a kindly whale
Maybe Gepetto’s inside
He’d like that.