Susan Senator

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.

Here is a poem sent by a friend of mine, which he wrote during a long flight somewhere. Tim does not have a special needs kid of his own but you could say that he actually has millions of them. I’m publishing it here, with his permission, because I think he really gets it.

Born to No

Mystery rush in
I want to catch some
As I sit in the bleacher near a rough sod track
And the lanes
Divide the field into narrow lines telling each runner, “Stay in.”

I sit
Not alone but not a part of the mothers and fathers and
Bored brothers

and sisters waiting for their turn To cheer sister special

There she is now,
Making her way to the starting line
12 years old and not made for glory
Born into tears
“No Ma’am. The Baby is not all right.”

Born into struggle
No walking at 1
No talking at 2
No playdate at 3
No school at 4

“No Ma’am. Not here”
Born to no.

And when she runs, she runs fast and away

So now her race; her lines ahead, her place to fit in
Between 100
meters of start and finish
In her moment to run.

The gun fires and she runs
Sister, daughter, child of mystery, running, head high, eyes wide,
arms swinging, wild.
“Run sister. O Good Lord. O Good Lord.
My child, my precious child of my body. Run baby run.”

And finish-I know not how or what number-she did
And she raised her
arms, her limbs like crooked trees arching toward their sun
Spreadingtriumph with every sweatdrop

She’s looking at me. Smiling.
And I am surrounded by her posse of yes.

She is our mystery of yes.
Nothing less.

And there is nothing more.

–Tim Shriver

One of the things that happened this holiday is that Natty got laryngitis. It is kind of funny, I have to say. He does his silly whispers, as Ned calls it. But Ned is also afraid that Nat will just continue to whisper, even after he’s better, because maybe it just feels better to him. He seems to love doing it. I also noticed that his flapping has become more frantic, more copter-like, in inverse proportion to the sound of his voice.

Even with his slight cold, Nat seemed to enjoy Thanksgiving. Grandma Shelly kept loading up his plate with all of the turkey bone parts, and he kept eating and eating. Nat’s ability to eat and not gain an ounce is legendary in my family. We have never heard of such a thing, so watching Nat consume food is kind of a miracle to behold. We can’t stop ourselves from offering him things to eat; we have the Eastern European Type Jewish metabolism, (known as E.E.T. Jewish) but Nat must take after Ned’s father’s Load Up on Carbs and all Kinds of Yummies metabolism (L.U.C.K.Y)

Just when I was about to say, “Mom, stop, he’ll just keep eating,” he got up from the table with his plate, set it empty on the counter, and left the room. We kept eating. I had made two pies: blueberry-apple-cranberry with cornmeal crust; and pumpkin with cornmeal crust. Cornmeal crust is way better than regular. Regular is like salty cardboard and doesn’t add anything to the luscious filling. It is often something to tolerate or to eat around. But cornmeal crust tastes a bit like mild crunchy shortbread and is a wonderful foil to the sweetness of the filling.

I am so fat right now I can’t stand it. The only thing that will make me feel better is to raid the boys’ Halloween stash. This is not a clever blog post ending, it is just the pathetic truth. I’m eating drinking and being sad because tomorrow, we diet. But not Nat, that L.U.C.K.Y. so-and-so. Ned doesn’t even allow me to complain about my puffiness because he’s sick of it, so I have to suffer in silence and hope I don’t have blogged arteries.

I don’t know what to write about, but I got that feeling so I know I’ll just start typing and there it will be. I start by setting out my life cards, fanned out in front of me, and I look at each of them, scanning for the sticking point. There are cards representing all areas: family, work, friends, tsuris. I used to read Tarot cards for fun. If this were a Tarot reading, probably the last card would be the Seven of Cups.

Let me lay them out one-by-one and see what I’ve got.

Ah, the Ben card: up last night at 5 totally congested. I showed him how you should blow your nose (really hard, one nostril at a time) to clear out, and he said, “But I’m afraid it will make my nose bleed,” and before I could respond, I looked down and saw my blood-filled tissue. Noseblower, heal thyself. Ben slept like a rock after the humidifier, sympathy, and Benadryl kicked in.
The Max card: another A in another subject. Peanut butter cookies he made with Hannah yesterday. We don’t yet know if she’s joining us for Thanksgiving. I drove him to school because of the rain, talked about what phone he is not going to get for Chanukah.
Nat: I did not talk to him last night, because I was in the middle of some excellent dancing. Ned did. Nat said to him, “You hit Terese and Mary.” Which was true. There had been two outbursts yesterday over spilled water. Too bad it wasn’t milk. (Will worry about the rearing of the ugly head of aggression later on today.)
Marital card: Musing on the quaintness of the word “Thanksgiving.” Why, it’s a gerund, for Pete’s sake! How many holidays are still named after the present tense of a verb? (Hopefully interest levels in marital card will improve a bit more by this evening.) Maybe it is thus so that we don’t take it for granted, and start calling it “Thanksgiven.”
Extended family: Laura is fine, whew, Thank God. You shouldn’t know from it. Sarai is trying to get used to this whole New Baby Thing, and hopefully she’ll make it to Mom’s Thanksgiving in lovely Connecticut. Dad says if Hannah comes, she has to pick up twigs (all children, grandchildren, boyfriends and girlfriends have always had to pickup twigs for Dad. Now that’s a Given.)
Physical card: Cholesterol test and flu shot happened today (so now get off my back MOM). Afterwards, I have never been so crabby or so eager for coffee. Last night, I ate tons of banana cake last night because I was in a baking and loving mood and we had rotten bananas and Ned asked so nicely so — three mixing bowls later, I was on the couch, filled with batter and regret. Somehow woke up not fat, but just give it time.
Work card: Baby Bellies later today, going over our new dance routine as many times as we can before they say they want snack or are bored or tired. I wrote the routine on the board only to realize that half of them can’t even read yet. What do I do, draw the moves?? That will be good for a laugh.

Still in love with my new job, today’s the last real class before the final. Today they are turning in their Research Essays, and I’m psyched. They took the assignment so seriously, it was just a joy to behold. Questions on how to use citations, the MLA style, etc., nearly drove me crazy, but, I love watching them work and think. I think I’ll have them write essays as their reward.
I may actually drive downtown because of the rain. There is no good way to get to work when the weather is this bad. Cabs cost $15 each way, and the T, well, … it’s a lot of walking in the wind and rain vortex of downtown Boston. So I’ll be driving, driving! in Beacon Hill!
Tsuris card: Why should I tell you?
The Tarot reading
is all done
For me it was
a lot of fun
It don’t mean much
just gives a glimpse
take it as such
or you will wince.
Okay, what else?
There’s always more,
and that is what
I’m Thankful for.

The 5 K Gobbler race for Best Buddies was a lot of fun, despite weather in the mid-20’s. I had outfitted Nat head to toe, with state-of-the-art running gear from Marathon Sports, but still he ended up wearing his down jacket the whole time!

When we got to the school where the race was to start, Nat bounced out of the car, in Special O mode, and it was Joyful Pre-Registration Stompies all around the gym until the race started. His smile never quit. His entire House showed up to cheer him on, with signs and treats. His team finished all together, a decent time, but Jack (the Residential Director with Nat in the pic) has already upped the ante and is now aiming for them to have more competitive times, and so they will be doing more races this winter! Note Nat’s smile and blurry left hand — that should tell you all you need to know!

A loved one recently had a baby and this made me remember the particular issue of newborn-feeding. Before Nat was born, I was so determined to breastfeed because of all that I had heard about it, that I went to La Leche League pregnant. I knew everything about it, all the benefits, the positions for holding the nursing infant, the convenience, the transmission of your immunities to the baby, the weaning, etc. I heard, for the first time, the anti-vaccine hysteria, the fears that moms had of putting “those germs” into “these pure, perfect babies.” Even back then I did not agree with that sentiment, and this was way before anyone was connecting shots with autism (other than Andrew Wakefield).

I did not agree with the anti-vaccination mentality, but I did agree that Breast was Best. That’s why it was such a calamity when, a week after Nat was born, I came to the conclusion that I was not going to breastfeed. After all I had learned, all that I had planned, it seemed that Tiny Nat was never full enough and was often crying. When he wasn’t crying, I was, because I was in horrible pain. I did not see how my mams were going to “toughen up” or get used to this; I did not see any progress in terms of Nat’s appetite. I did not know what I was doing wrong, and I didn’t feel like I could call any of those La Leche League Ladies I had lounged with for long learning lessons about lait, pre-partum. My sister, whom of course you all know I adore, had not had any children. Neither had any of my friends, most of whom were not even married yet! My mom had bottle-fed. There was no one to ask. Lactation specialists probably existed, but were not readily available. I had a book or two, and I had the nurses at Beth Israel where I had given birth, but every single one of them had given me different advice.

There was Nat splayed across my chest, screaming and screaming. A tiny little quivering pink wormy thing that I loved so much I could barely think, so I was always terrified of breaking him. Anyway, I remember the moment. “I can’t do this, I can’t do this,” I sobbed to Ned.

“Sue, it’s okay,” he said. “What does it matter?” Ned felt that it truly did not matter which way a baby ate; he just could not stand to see me so torn up, literally and metaphorically. He then even made me laugh, I remember that. And I think that was the deciding moment. We were in this together, and we decided together.

We gave Nat his first formula, the green and white label Similac dry mix, and Nat drank and drank. I grieved for a very long time, not being able to do what I had planned for so carefully. I was ashamed to tell all of my La Leche companions of the traitorous decision I had made. Later on in life I would still feel that shame, that somehow I had failed at something right away as a mother, and that I had not done what was best. If any woman can breastfeed, why couldn’t I? How did they rise above the pain and the screaming?

When Max was born, the exact same thing happened. I could not make it work. And he was a much bigger baby than Nat, and so greedy and needy in terms of food. Max drank four ounces of formula the very first time I offered it to him, and was the most content, fat little baby I had ever seen. (Oh. My. God. Stop remembering that…)

I actually did nurse Ben successfully because by then I had locked in place all the right supports and I figured out a way to get through some of the physical pain. But I never ever like it when people bully others into believing that you really really should breastfeed, and that it kind of means something if you don’t. Yes, of course there are health benefits, and it is lovely to connect in that primal way with your infant; but it ain’t everything. It’s one good thing out of so many. The sooner a mom learns not to beat herself up, the better.

Soon after their first few weeks with the bottle, Nat and Max slept the night. The night. What joy. So I could sleep, Ned could sleep, and then we could be our best to parent them the rest of the time. What could be more important than that?

No matter how busy and fulfilled I feel day-by-day, I still have pockets of time that trouble me. I fill those pockets with obsessive thoughts, which first please and then plague me. Although I no longer struggle with full-blown OCD, I still have difficulty staying in the present and then moving gently forward. I still get stuck on things that happened, which then keep my brain tripping over the details. Sometimes I think I’m looking to relive what happened, sometimes I think I’m looking to redress what happened. (You could argue that writing this in my blog further exacerbates whatever occurrence I’m hung up on, but I find it helps me make sense of it and thus purge it. I don’t know why it has to be public, however. Everyone in my life asks me that: how can you put yourself out there like that? They worry about me. They are glad they are not like me. Maybe they admire, too. Whatever. Writing makes me feel stronger. Writing is self-affirmation for me; sitting and thinking is self-destruction. I don’t know why that is. Anyway, blogging and sending myself emails when the blogging subject is too excruciating is a way I can connect what goes on in my head to the world outside; I think that’s why I do it. You’d think I would examine that, but I don’t.) One thing I have found is that in blogging, although I certainly get my share of Trolls who say mean things to me, there are so many others who feel what I feel and let me know, and then I am no longer alone in my universe of thought.

When my OCD was acute and getting in the way of my life — and this was, unfortunately, when Nat and Max were babies — I had a wonderful therapist who was able to probe the deeper reasons for the OCD, and also to help address my behavioral expression of it. Aside from being on a course of Prozac for a while, which of course helped keep my brain “slippery,” as I thought of it, R’s work with me was nothing short of miraculous. I think that is because she understood that in addition to the imprisonment of OCD itself is the debilitating shame that beats you down.

The best thing she ever said to me was, “I look forward to a time when you will simply say to yourself, ‘I need to do this checking,’ and embrace it as a part of you.” By saying this, she removed the shame and gave me a way to shrug and check or whatever I needed to do. In lifting this burden from me, she actually made me feel less compelled to behave that way! She made it less of a Big Deal. She was the first person ever in my life to say: “We all have our things like that. You are not a monster.” That attitude was eminently healing, to a point where I now only have moments of being stuck in a negative thought cycle.

Of course I wonder how to translate this kind of liberating acceptance to my children. I never want them to feel ashamed of who they are, of things they cannot help. I use shame on them when they are being thoughtless to others, rude to adults, things like that. But in terms of who they are and what they want to be in life, I try to embrace that.

This all makes me think about Nat and perseveration. The age-old tension between Autism Educators and Autism Supporters. Being told when Nat was 5 that “whatever he is able to do in life is up to you and the effort you make.” Constant vigilance against the Evil Stim. Slap it down, redirect it, interrupt it, retrain it, give him something else to do, something Age-Appropriate (meanwhile, have my other two, NT children ever done anything Age-Appropriate? Beanie Baby play well beyond kindergarten years; infantile video games; wearing costumes; never evolving into Boys Who Play Sports…) How shaming is that?

I think I knew that it was not my way, even then. That was before I was self-aware. I would lazily reinforce the training Nat’s teachers gave us. I would bastardize the behavior charts into other things, into little storybooks and songs, to turn this disciplining into a game, something fun and natural to me. Increasingly, I would say that “the way I am supposed to raise Nat is really not in tune with my natural parenting style.” It wasn’t until I had some validation from Exceptional Parent Magazine, who actually bought an article from me, my first, in 1997, that I realized that maybe I did know a thing or two. For years I looked for a psychotherapist like R who would work with Nat, making sure he was happy inside and finding ways to express himself and be himself. But, of course, no psychologist would treat Nat with cognitive therapy once they heard he was autistic. They would insist that he needed — you guessed it — behavioral therapy.

That, combined with what R was teaching me, allowed me to eventually create what we now do with Nat: get ourselves to a point where we let him do whatever he needs to do and embrace it as a part of him. To be good to him, and never shame him. I hope I remember to do this, every single day, for him and for me.

His mother cried and held him tight
His father asked, “Are you alright?”
— Maurice Sendak, Pierre

I stand at the door, peering at the empty road, frowning at each car that is not it. My hands stuck to my hips, I’m a slimmer, darker version of Grandma, stocky and pink, teased and glued yellow hair high above her head. Grandma used to watch for us to arrive; you could practically see the waves of impatience shimmering above her head.

I am watching for Nat’s white van, having just talked to T on the phone about the week at school. This is a ritual I enjoy, even though I hate it when my phone rings, a vestige, perhaps, of sensory issues of my own. But when T calls, I just have to listen for the most part, and then compare my home experience with Nat to hers during school. Home, school, and House have regular contact to keep Nat pinned to a safe and happy reality in our minds.

“Overall his week was good,” she began. ‘Overall’ snapped me to attention; and I’m paraphrasing here, of course. “He did have one outburst, but Sue, it was the weirdest thing! He did not utter a sound. It was a bite to his arm, a pinch, and then he cleared his worktable. Then, he was fine for the rest of the day. And of course I have no idea what the trigger was.” She might have said “antecedent;” this is a modified ABA classroom, after all. Most people don’t usually put the words “ABA” with “humane and loving,” but I will say it every time about Nat’s experience there. Those teachers adore him and no one gets more pleasure out of his ways than T — other than me. We agreed that the lack of such outbursts in months and months, must likely mean that he is finding more ways to communicate his needs and observations and accommodate us, and we are learning better how to communicate our needs to him, and understand him and accommodate him.

“Today,” she went on, “was amazing. During Morning Meeting, one of the boys went up to the board to place a velcro picture of a teacher who was here, and I guess the velcro — something was wrong with it, but none of us noticed. But Nat did. But instead of leaping up, and being upset, the way he might have last year, he said, “Nat fix it, Nat fix it.”
And so I said, “Nat, what should we fix?”
“The card.”
I looked and saw what he meant. I was SO proud of him, and how much language he has acquired, and ability to use it.”
I knew what she meant. Such growth.
“Oh, and that video you sent me — Oh My God –” she said, referring to Amanda’s video, which I have looked at again after some time. (I know, I know, this is the third time in two days I’ve linked to it, but the insight is just breathtaking, and T thought so, too). “I have never thought of things that way. But I have had thirty-something students and now — ” I knew just what she was saying, and I feel like this is what Jews mean by Tikkun Olam, healing the world, one person at a time.

I am ready and eager for a Pierre-like hug and kiss, with my Natty, my heart just slopping over the edges with delight and motherly pride for my pride.

The bus swings up, the driver cheerfully greets me with her cigarette-roughened voice. And there he is, taking the front walk in leaps; his usual pace. Nat is home, my Friday Special Delivery.

I am now calling for advice for parents, words of wisdom and encouragement and honesty (all or some of the above), from ASD adults, whether you are parents or not. Obviously one can’t generalize or apply all advice to all cases, but I’m sure there will be some important messages you’d like to convey to autism parents, along the lines of Amanda’s video or Jim Sinclair’s “Don’t Mourn for Us.” (In fact, if anyone can forward this to Jim or Amanda, I’d love to contact them myself, if that’s possible.) I am also interested in resources from ASD adults, whether blogs, books, or associations or organizations that have felt helpful, empowering, and/or informational to you; also conferences (like Autreat?) that parents can attend to help them feel less confused, and more able to nurture and to parent successfully.

If you have thoughts on various approaches that you feel are helpful for you (fun, educational, therapeutic?) please let me know. I would also like to know what has felt hurtful or harmful. This book is about spectrum: I have the full range of experiences here.

You do not have to post a comment; you can simply email me your responses and please indicate your first name, age, diagnosis, and location, and whether I can use your words.

I was working on the last chapter of my book, where I talk about parents’ recommendations for the future, and a young man with Asperger’s wrote to me, asking if I’d like his opinion. I am so glad that he did that, because it got me thinking again about Nat and wondering about the world from his perspective. I guess I had been thinking about how stimmy he has been lately, and I was now feeling a little guilty about letting him be that way. You know, aren’t I supposed to be trying to make him as “functional” as possible? To blend in? For that is what I’ve heard many times, from educators and others.

And suddenly, after reading what this young man wrote to me about how nonverbal autistics need more tools to help them communicate and to help the rest of the NT world to understand them, I was so ashamed. I thought of Amanda Bagg’s video, and watched it again. I had a lump in my throat watching her familiar movements, and it made me miss Nat so much, and then I was so horrified at myself for having momentarily lost what is most important: letting Nat be Nat. Amanda shows herself, throughout her video, going through every one of the five senses, interacting in one way or another with something in the room, rocking and looking veyr much the way Nat does when he is doing his thing. She says, (and I’m paraphrasing, and I hope this reference is okay with her) “Ironically, when I interact with every aspect of my environment, it is called ‘being in my own world,’ but if I limit my responses to only a limited few things, I am thought to be opening up to the world.” She also says (paraphrasing again) “My inability to speak in your language is seen as a deficit, whereas your inability to speak in mine is seen as natural.”

Watch this video and you will, hopefully, really feel what I am saying.

What would make your life work better? What would help you the most, in terms of autism in your life?

I dug back into my book today, and I have to say I really like how it’s turning out. I love all the different people I have woven together chapter-by-chapter; the differences and the common denominators. It blows my mind how much we all have in common, and then again, how sickeningly alone we can be in this life.

Now the questions that keep popping up are: What should research and government put their energy towards? What is most needed in the coming years? What is most needed now? Why? How does your answer relate to your own life?

What would you like to see scientists focus on the most, about autism?

Where would you like to see money going, whether raised by private organizations or made available by the government?

What external development would allow you to be a happier person?

What do you need to do internally to be a happier person?

Please respond to any or all, thinking of how autism touches on your answers. Also, indicate your name and your child’s, as well as child’s age, diagnosis, and where you live. And make sure you give me permission to use your words and to call you. Pass this on to any autism parent you wish, I am looking for a diversity of perspectives. Think Spectrum!!

And thank you!!

In this unusual November, where leaves stayed on the trees halfway into the month, a week ago we wore tee shirts but today there will be snow, my (extended) family has experienced a birth and a death. On November 6, my nephew Willy was born, a beautiful squishy sweetheart of a boy. Ned’s sister Sarai is a (first-time) Mommy of this wonderful new life (she and Ed were married 2 1/2 years ago). They seem to be doing well (enough), and at the time that I have written this I did not find out if I can post pictures.

And yesterday, Ned lost his 97-year-old grandmother, Victoria Marcus Olds. Ned is named for her (his middle name is Marcus, which is her maiden name). Grandma O was quite a dear person, lively and bright, warm and loving. She felt like a grandma to me right away; she was very easy to be with and she really cared about what each and every one of us was doing/thinking/working on. She is known for how she would ask us question after question. I always loved that about her, and I will really miss her. Ned wrote a beautiful piece about her last night that really says it all. Good-bye, Vic.

For Nat’s party we had a total of sixteen kids, and various adults. Everyone bounced in the Moonbounce, which listed and sagged a lot because we were far exceeding the weight, age, and number limit. But we have found that those Moonbounces are kind of indestructible, as, apparently, is my house. After everyone had had their bounces’ worth, and then a piece of the cake (which was a blue van on a road, because a lot of Nat’s friends really love their vans), I invited everyone to come into the house.

I had not planned an indoor party; indeed, I had not planned much beyond the Moonbounce and the cake. I didn’t even have food offered! (Adults standing around with nothing to eat! What would Mom say? But I did have lots and lots of orange soda and Sprite! Still, I think I heard a groan of shame all the way from my childhood home in Connecticut.) The House staff who had come along all looked frozen as they stood their watching kids bounce or helping kids get their rightful cake. So I told everyone to go indoors and we would watch Nat’s new movie “Oliver and Company” (that’s the one with the dogs, plus a cat, although frankly that could describe maybe half of Disney’s movies).

So we all crammed into the livingroom, 5 on the window seat, 5 on the couch, and others hanging around standing. We all watched the big blue screen of the TV while the film rewound (Nat never ever rewinds when a movie is over). I was so happy to have all of them there, just sitting so patiently, everyone so sweet and eager, and especially Nat, who was just crazy happy. So happy, in fact, that he was upstairs for most of it! (Too Much Joy).

Nat’s 19th birthday party started with lots of cake: one Moonbounce cake, and 2 boxes of Duncan Hines cake (one yellow, one chocolate). For the edible cake, we had decided to recreate Nat’s van that his social group uses, a dark blue minibus. Even for the kids who were there who were not in the social group, vans are usually an important fixture in life!
… See my Tabblo>