Susan Senator

I’ve been using a new dance DVD given to me twice this holiday season — by Ned and by his father — and it is the best yet. Blanca is a wonderful teacher because she is very human, very real. There is a sweetness and warmth about her, an unrehearsed quality to the way she instructs on the DVD, that makes you feel relaxed and open to learning.

Dancing with this new DVD made me understand something about the way I learn. Sometimes Blanca breaks down a dance step or move, and other times she practically mumbles what to do, very quickly, and then right away moves into it. This forces me to do the same, in order to keep up with her and the music. Yet I feel no anxiety when doing so. Sometimes it is just right, and I can do it without having anything broken down into smaller steps. I just dance, and then, there I am, dancing!

While falling asleep last night, noting with satisfaction the sharp benign pull of my leg muscles, I thought about the breaking-down of things done in many forms of education, in particular, Nat’s education. Many of us learn that — ABA (Applied Behavioral Analysis) style — if you break things down for autistic people like Nat (as if they are just some big, uniform group), they will be able to learn many new skills. Especially if you reward each small step gained.

I am not trying to belittle this popular educational approach; I believe that ABA-style education works for many people in general. It is positive reinforcement. It is breaking down complicated new concepts into more familiar, manageable ones. I have seen Nat respond well to this very sensible, structured method and I feel that it has a definite place of respect in education.

However, my heart and soul have always revolted at this style of education, particularly as a parenting style. When Nat was little, like 4 or 5, and we were being trained in ABA along with him, I remember feeling such a loss — the loss of my own intuitive, holistic, maternal approach to teaching him. The warm exciting flying-by-the-seat-of-my-pants approach that comes naturally to me. I was told time and again that this more consistent, structured, mathematical-logical approach went along with Nat’s mind better. That he is different from me. But what it felt like to me sometimes was I was being asked to “civilize” him, to squeeze out his natural tendencies towards stimming and other things autistic, and make him into something he was not.

Of course this has been my own lifelong struggle as Nat’s mother: to figure out how to separate what is me, from what is him. So, not only to figure out what is Nat and what is the autism, (and therefore what can/should be changed/refined), but also: what is about me and my needs — and what is about my child. From the moment I was told to put him in a full-day, full-week school program at the tiny tender age of 3, my wispy little toddler who seemed much much younger than that. To the moment I was taught how to teach Nat to play with cars like the rest of the kids his age (“Put man in car. Push car. Make ‘vroom’ noise. Good job!” Check off plays appropriately.). To the time I was advised to let him try living with others in the school’s group home, at the tiny tender age of 18. I feel like I’ve always basically been doing it wrong, according to the experts. Because I have been told to approach him from this logical standpoint, this step-by-step, dry, neutral point of view.

The reality is far more organic. For the truth is, the best teachers Nat has ever had are the ones who connect with him first, and operate by feel. Sure, they follow their training and their researched curricula; but what makes them effective with Nat is that they are getting to know him as he is and loving what they learn about him. Nat’s current teacher is a great example. Even when she reports an outburst — the required language of the ABA teacher, the signal that there is an aberration in the smooth, flowing data — she will see in it something positive. She tells me that this outburst actually means he was trying to advocate for himself; he was using his words, but the other person simply could not understand. That kind of thing. She sees him the way I do, in other words: with compassion, love, admiration, and yet also with discernment. The best teachers do that. The best teachers are not technicians. They do not follow their training solely with their minds; they also involve their hearts and their intuition.

Over time, I have learned that it is okay for me to teach Nat the way I do. How often could someone like me really use ABA-style techniques anyway? Where the hell is that chart with the velcro rewards? Where’s the pen when I need to mark down the data? So often I have had to grow very still and find my way to Nat, and hook into what’s going on with him. I have to feel what to do. I have had to connect with him and go from there. I think that what I do is just dance with him.

Spring, soft hard muscle
But dance swirled unseen, unknown
Eyes opened in the fall.

Our small silent breakfast was rocked a bit by Nat this morning. Perched precariously on that precipice, he nearly fell in, but somehow, he hung on, getting to shouting and jumping, but no biting himself. “Laundry, do the laundry,” he was saying, so upset, over and over, “Mommy will do laundry,” which he had started talking about last night the moment we arrived home from our Christmas in New Hampshire. Then, I went upstairs to look in the hampers, and he followed. “Unpack bag, put away pants,” Nat instructed me. I did all that, and even lugged a full Mahogany laundry basket all the way down to the basement to start a wash — at 10pm. Illicit accommodating, this is called, or something like that. What it means is that if you give into this thing, you are teaching your kid that he can bully you and panic you into letting him misbehave.

Yes, yes, but who wants an explosive tantrum at 10pm or 8am? Also, Ben was on his feet, completely at the ready. I went back in time, to my ghost of Christmas past, all those days before Nat moved out, when Ben would run to do whatever it was Nat was screaming about, just to calm him down. A total codependency, where Ben — and we– were Nat’s slave. Ben had lived in perpetual fear and dread.

This is not what I wanted. But this morning, hearing the call to launder, along with the jumping and voice-cracking-near-screaming, I said, “Okay, okay, I’m doing a wash now.”

“No laundry. Disney on Ice. Heeeeeahh eggs.”

Oh, jeez. He didn’t know what was bothering him. He was also telling me that he wanted me to eat eggs for breakfast. His getting up in arms about other people’s routines is not a good sign. Time to revert to the reciting of schedules, to organize, to use a neutral tone of voice, to de-escalate. Forget my own feelings of tiredness, my hunger, my yearning to breathe caffeine.

“Heeeahhh eggs. Heeeahh ice.”

“I’m having cereal,” I said, momentarily considering making eggs. “I’m going to do the laundry, and then take you to Social Group so you can go see Disney on Ice. Okay Nat? Okay?”

“Okay.”

“But you have to be calm,” Ned added.

Started a wash — neglected to shut the machine door (a front-loader), which meant that later I would discover that all the soap went in but no wash had been done, a story for another day — and then made oatmeal for Ned and me. Nat was stomping in not a joyful house way at all. I was so irritated with him. “Okay, Nat, let’s go.”

Drove over to the drop-off place and got there 15 minutes early. Ick. Sat in the car with the motor running all that time. Finally I called Ned and he checked with the group and it turned out that the outing was to start at 12:15, not 9:30. Sigh. The long litany of logical explanation. “Nat, I made a mistake. Disney on Ice is later. After lunch. We have to go home.” Wait for it, wait for it…

“Okay.”

Whew. So we started driving home. I was amazed at how quiet Nat was, self-talking back to normal. As we got closer to one of my favorite Starbucks I imagined taking Nat in there. I imagined his large movement, his head-turning chatter. I sat with that picture a few moments, turning it over, looking at it from all angles: the others, the drinks we’d order, would we get seats, would Nat plop down among strangers, leaving me standing far away, and most of all: was I up for it?

Sure, I was. I wanted that damned cappuccino; I hadn’t had my usual 3 cups because of the laundry. Besides, what was I so worried about? “Nat, want to go to Starbucks?”

“Yes!”

So we went to Starbucks, Nat was happy and terrific, smiles from those all around us who either were happy themselves or just enchanted with my darling.

Got home and before getting myself ready for the gym, I went into Nat’s room to straighten. I wanted to close his dresser drawers. Looked into the pants drawer: totally empty. Ah, I thought. It is time to do the laundry, after all.

As I was falling asleep last night I thought about the perils of not knowing and of not being able to find out. You see, what happened is that Nat got off his bus yesterday and the driver handed me a small green saran-wrapped package. With Nat running up the walk with two heavy bags, I had no time to ask what this was and who it was from. I shouted a thanks and waved, which I hoped would be adequate for this nice gift, whatever it was. Of course, it may not have been from the driver at all (but maybe it was, because I had given her a gift last week. The drivers, the House staff, and the teachers are THE MOST IMPORTANT people on my lists, right under family; they take care of Nat, after all). The gift might have been from the school, the House, or something Nat himself made that the teachers handed to the driver for safekeeping. Who knows?

I got inside and set the package down on the counter while Nat whirled around me, unpacking loudly, throwing backpack down and duffel bag up, stuffing clothes into drawers so old and full that they can’t even shut. (Our house is, alas, furnished mostly from cast-offs repainted, yard sale treasures, college day finds. The boys’ dressers, and mine, are rickety but perhaps charming old things that are totally inadequate for our needs. Sometimes over my 25 years as a married woman I have been able to splurge and buy something new, but, with Autistic Adulthood and College For Two looming, those days are over.)

Once downstairs, I opened the little bundle and saw what looked like a broken gingerbread cookie, resting on shredded green and red paper. It had a string through it. But — no tag, no card, no note in the bag. Who was it from? I forgot it, busied myself with fixing Nat and Ben lunch, and finishing whatever it was I was doing prior to the universal early dismissals, when the world suddenly shifts, black to white, routine to the great vacation void.

Sometime later, Ned took Ben out and Max went upstairs, leaving me downstairs with Nat. I was tidying up as I seem always to be doing, when I noticed the broken brown cookie thing sitting there. I picked up a tiny piece of it and threw it into my mouth without thinking.

As I started to chew, a dry spiciness on my tongue. Instantly my mouth filled with an intense cloud of clove. Burning, minty, clovey flavor everywhere, tasting less and less like a cookie and more and more like wrong. “Ew!” I shouted, and spit ferociously into the sink. “Ew!” I rinsed and rinsed and the weird dust storm persisted even through the drenching. I ran upstairs to brush my teeth, gagging now.

Okay. It was not a cookie. Or it was a really badly-made cookie. “It was an ornament, probably made out of plaster,” Ned said, a small smile on his face.

“But –? Am I going to die? I had this in my mouth!”

“You’re not going to die,” he said, laughing a little.

But I did want to know, who had made it, what it really was made out of, where it had come from. I couldn’t ask Nat, he would have said, “Nat.” Meaning either he had made it or he had brought it home made by ___?

This made me think once again what it must be like to exist in a world where things happen to you and remain an utter mystery either because you don’t know who to ask or you don’t know how to ask.

The news that once again he bit his arm
Because something broke–nuclear alarm

Made me want to write it down
Though risking scorn from those unknown
For though we share our children’s trials
We make each other drink our bile.

Yet -why oh why do some improve?
The strange busy mixtures, the banished food?
The mystical subtract and the timorous add
Ironmercurywheatlessmilkbad
Was it a germ? Was it a shot?
Do I test his piss, or analyze his snot?
The hands on, the relentless school
The tinkering, tweaking, the next new tool
If you succeed, then I’m a fool.

The enemy’s the neuron!
The enemy’s the Lupron!
The enemy is Jenny!
The enemy is Lenny!
The enemy is Offit!
And Big Pharma’s profit!
Meanwhile families are in need
Our children need love, potential freed
But my kid is way different from yours
So please don’t open my old sores

We don’t know what’s the deep down truth
We don’t really have sufficient proof
What we do know is, we could help each other
Dad to dad, and mother to mother

And so I wish, for this time of year
Let’s all put away the nasty jeer
Let’s muzzle our hate
And try to relate
Let’s tend our own garden
And not let our hearts harden.

A friend is starting a Haiku meme for bloggers. Haiku is not my favorite, because I don’t like rules. But I always love writing poetry, and I love this friend, so here’s mine for this week’s theme, which is “fleeting:”

Anemone eyes
Open and close under your seas
Dance inside your breeze

When I first had my children — particularly Nat, because he is my firstborn — I was very weighted down with a new sensation. This feeling was not necessarily good or bad, it was just very, very encompassing. I used to look at Nat and feel something catch in my throat, twinge behind my eyes, and I didn’t know what it was. Why did I feel something akin to tears when I looked at my darling baby? Sometimes I say it was the autism I was sensing. Sometimes I say it was post partem depression. My own inablity to love, that’s another one I came up with sometimes — self-hating jackass that I can be.

Today I was thinking that it was just new parenthood, the axe cut that separates the childless from the childful. Once you have a child in your life, you change. You have to. Suddenly you have to think of them. No matter how shitty you feel, let’s say you just gave birth, you just pushed a watermelon out of your body. Or you had it sliced out of you. Or you just went all the way to China to bring this small person into your home. The absence is now full; you have to make space physically as well as emotionally, and stretching space is not an easy thing. Not only are you expanding to encompass this new life; you are also now required to be ever vigilant.

Last night after the party, Ben was tired beyond tired — that hypnotic, almost-drugged sleep you fall into on a long car ride home. The thing is, so was I. We both staggered upstairs and all I wanted to do was rip off my boots and fall into bed. But then Ben said, “Hey what’s that?” There was something on his bedsheet, looked like from when he’d had a bloody nose. Without answering I just dove down and stripped off the bed — who cared what it was, it had to be gotten rid of. I had to wake up, swallow down my immense discomfort, flex exhausted muscles, and remake his bed. Of course I did! It was my child, needing help. Just do it, Susan; the quicker the better.

It’s the perpetual consciousness that is a part of you eternally, once a kid is in your life. So here’s what I think: when the child has a disability — and autism is the one that for some reason comes to mind — the consciousness cuts a level deeper. The severity of the cut is directly proportional to that child’s need for help.

This is why I wrote my second book, because this is often on my mind. With such searing consciousness, how can one let go sometimes and just live? How can we have a life of our own? How do we find some balance? Last night I had some of that, because we chose not to bring Nat to the party. Of course, there was a different cut, because I missed him and felt guilty that he was not there. But I did enjoy myself — a lot. Until I had to change that sheet.

Places such as the hypnae centre of advanced hypnosis teach various forms and techniques of hypnosis that can be applied to optimize daily forms of work.

Bringing Nat to parties is one of those things that has never been easy. When he was little, he would do unsafe things like try to drink from others’ discarded glasses and he once licked all the salt off the chips and put them all back in the bowl.

Now, he is perfectly kind and happy. The problem, of course, is me, and The Others (not as in Lost, but as in The Rest of The World Especially Those Who Don’t Know…). When Nat is perfectly kind and happy, he is very, very active. He goes into one of his circuits, flapping, talking to himself, from one room to the next, in a pattern, and sometimes bumps into people. Without saying, “Excuse me,” of course. Like so many things, I have tried and tried over the years to prompt him when to say that (after bumping or burping), but he never does it on his own.

The Others notice. I notice them noticing. I wince. How is it that after all these years I have thin skin and wrong priorities? Why do I feel like I’ve failed because his behavior is not perfect? I think it’s because I was raised to try to be as good as possible. To be perfect, perhaps. Diseased to please. So, even though I think Nat is being as good as he can be, given his social deficits, it is still not good enough. And people look. I look at their faces and watch for the puzzlement. Nothing rude happens; it is just this puzzlement. These are friends, or friends of friends. They may even know about Nat, but they didn’t really know. They now know. They feel the disability. And they see his limitations, and my inability to fix it. I hate that I still feel that way sometimes. I hate that there is this drive to fix everything, to be perfect. That makes me so sad.

Okay, reality check. Parents get ashamed of their kids sometimes, right? How many times have I cringed when Ben walks out of a friend’s house, letting the door slam in the face of the mom who is saying, “Thanks for coming over, Ben! Bye!”
“Ben! Say thanks! Say goodbye!”
“Bye,” comes the muffled voice from within the depths of the red hooded sweatshirt.

Maybe I get sad because I want to be able to go to a party and just have it be an easy show-off of my kids, but I am too small-minded to be able to feel show-off-y about Nat sometimes. I try so hard to see all of his progress and virtues, and I tell everyone who asks, rattling off everything from how well he transitioned to The House to his four jobs to his helpfulness and ease with everyone. So good, so good. So much to thank God for.

But — not good enough? I think it is, but then again, is anything?

BSUR
–JT

When I am an old woman,
forget wearing purple
I already do.
It’s today that matters
Your life’s for you.

So, when I am an old woman,
I shall wear sparkles
and bedlah
and veils
and carry zills
and fill my ears with ancient songs
and my heart with thrills

If Natty gets to be who he is, don’t we?

Beauty is what this woman is all about. Beauty transcends body type and age. Beauty is about what radiates from your soul, and how apparent your joy is.

Watching teenagers grow up is like a sweet sad joy and torment. So much they don’t know, so much you don’t know. Things you want to say but can’t find the words or don’t dare. So much emotional constipation. Just as Nat and Max were babies and toddlers together — more or less (they’re 2 years apart) — now they are both teenagers aging out, more or less (Nat’s a very young 20 and Max is a very old 17, so that together they average 18 1/2 (Ned just did the math for me on this.)).

My father was reading to Nat the other day; Nat was so edgy, jumping out of his skin, needing something, constantly moving. But when he sat down on the couch, like a bird resting for a split second on a branch, my dad seized the moment to offer to read him a story. Sylvester and the Magic Pebble is an old favorite of Nat’s, and Dad loves it just as much. We all do. Yes, it is a children’s story, but you could also call it ageless. Innocent and childlike but also right to the heart of familial love, where the only thing that matters is being able to be a family together.

I watched Dad reading to Nat, pausing to ask him what was going on in the picture, or letting him read a word or two. This is a tableau that is so familiar that I could almost not notice it, except there it was. Nat so old now, but also so young — I’m not supposed to say that, some of my very high-functioning autistic comrades have told me — but Nat seems young because his verbal language is so underdeveloped. He talks “like a baby,” Ben might have said, years ago. These days he speaks a lot of “gibberish,” as Max called it in his college essay. Harsh, but true to them.

In the verbal/social sense, Nat seems many years younger than Max, but that is the tragedy of disability. He seems that way, but he is most definitely not. There are so many ways in which you can see Nat’s 20 years. Most obviously, his low voice, his beard-roughened face, his rock-hard man arms. But there’s also the way that he is more distant from me, more unto himself than ever. He doesn’t share his candy anymore. He does not willingly hug me — not that he doesn’t want to, but it’s clear that it’s for me, not for him. He does not want to talk about things in my language, and when I delve into his (“Nat, did you just start singing Your Mother and Mine? That’s from Peter Pan!” — “No Peter Pan.”) the wall comes down. It is so hard for me not to feel that this is Nat rejecting me somehow. It is so easy for me to believe that this distance means Nat is unhappy with his current life, mad at me for sending him to live at his school. Did I break his heart as I did mine? I will never know and many would tell me therefore not to think about it or not to think the worse. But I do. There are so many interpretations of his dimmer connection to us all, and most of them are not good.

But when I observe Max and his recent development, I can interpret Nat a little differently. Max has more social skills, so he knows how to coat his distance with kind smiles and soft shrugs. He never comes over to me to hug me, and I would never expect it. And just as I get a pang of jealousy when he so happily runs to open the door for Hannah, this is kind of the same pang I feel when Nat walks into The House so eagerly.

Ned says the eagerness on Nat’s part is about his hunger for consistency, rather than it being a preference for The House over home. I, of course, do not know what to believe but Ned’s interpretation feels too cold for me to accept. Nat is not just a creature of routine. Nat is one of the most complex human beings I have ever known, but for some of us it is easy to reduce his actions to simplistic reasons (like thinking he’s babyish for loving the Sylvester story or for speaking in a simple, childlike way, when really there are plenty of adult reasons for this). For me it is easier to interpret his actions as being complicated and full of painful meaning. If the truth is absolutely somewhere else, I don’t know how I will discover it.

Last night Max and Hannah went to see a concert at The Middle East. It may have been his first or second rock concert, but definitely his first in a bar-like atmosphere. I drove them because it was a cold rain and naturally one or the other of them was unprepared for the discomfort of the T, the questionable safety of the neighborhood, or of standing outside for a while waiting to get in. But I could not get them to think ahead. They were utterly unconcerned about the rain or the seediness of the neighborhood, the time of night (a school night), or any of it. I realized that this time next year Max would be completely without me, going off to places like this or worse, possibly underdressed and definitely unprepared. Driving home in the dark almost-winter of the night I felt kind of bitter and lonely, jealous, too, of his youthful innocence. Feeling so far from that myself as the mother of two young men at this phase in life — both so innocent and both so unaware of all that may lie before them.

Ben gets the window menorah ready.

The latkes came out great. Nat stares at them covetously.

It turns out, I flap too.

I came home today to Ned engrossed in a phone call. He handed the phone to me, mouthing the name of Nat’s teacher, and then whispering, “outburst.”

Shit! Didn’t I just write yesterday that Nat’s outbursts had decreased? I had even knocked wood. Wood! What good is it, anyway? Lesson here? Don’t knock it until you’ve tried it.

So I found out about Nat’s outburst, which was — as always — directed at himself, a bite to the arm, and lots of staccato screaming. Terese told me that it happened because the class computer froze. But — she told me about the bright silver lining. When the computer froze, Nat asked for help. He watched Terese press the “reset” button (whatever, I don’t know). It did not fix the problem. He then pressed the reset button himself. My God.

Still nothing. Then he started “perseverating about wanting to play the computer game,” (to me, it is not ‘perseverating,’ which has a clinical, slightly pejorative ring to it. Why do Neurotypical people get to ‘persevere,’ but Autistics are said to ‘perseverate?’ One is good, one is undesirable. I would say that Nat was persevering in trying to accomplish his aims. Perhaps perseverating is in the eye of the beholder, and it has to do with how annoyed the beholder is getting.)

So — after articulating the problem, observing what was to be done about it, trying it himself, and then talking about it many times — Nat blew his stack. But still, he directed it at himself. Just what I was talking about yesterday.

Terese feels about this the way I do. It is actually such progress, to see this sort of behavior, even the outburst, compared to what Nat used to do (need I go into it? See Chapter 8, “Hitting Bottom“). It is a grim reality that this society would much rather see someone hurt themselves than others.
_____________________________

Terese changed tracks after letting all this sink in. “Oh, my God, at Papa Ginos,” she burst out, her voice swollen with joy. “Wow. He was just whizzing through his work. Over 100 boxes in an hour. Phenomenal. So we are now fading the job coach. I almost never get to tell a parent this, but we are fading out Nat’s job coach.”

I wanted to cry. “It’s like he’s your honor student,” I said.

“Definitely. Nat is going to graduate summa cum laude,” said Terese. “The problem is,” she went on, “sometimes our students see the job coaches as a kind of prompt, and they depend on the job coach to be there in order to do their work. This is what happened with Nat. The job coach had moved to where he could see Nat, but Nat could not see him. Nat would have the package in front of him and just sit there.”

There it was again. That passiveness. The crux of Nat’s disability, where the “I” is somehow not clear. It is getting better, of course, but it is a long time coming. It reminds me of when Nat was just a little guy, around 4, and we took him to LCDC (Arnold Miller’s Language and Cognitive Development Center) in Boston, where Miller did an hour-long intake. We loved the theory of LCDC, whereby a child must go through all of the developmental phases in order to progress, and the school would mold the environment physically to stimulate developmental growth and problem-solving. ( It was so long ago, I may have some details wrong.)

At the intake, Miller took Nat’s shoes and hid them in a large play structure, full of holes, shelves, ins and outs. He watched to see what Nat would do. What did Nat do? He cried for an entire hour for his shoes.

Miller interpreted this as a “motor planning issue.” But I knew — I just knew — that Nat’s angst was about not knowing that he could just go and get the damned shoes. He was waiting to be told. That is my Nat. Motor planning be damned! Needless to say, Nat did not go to that school. People have to watch out that they don’t bulldoze you with their dogma.

At any rate, Nat waits for his moment, and I am sure it will come one day.

Nat has been pretty much chugging along, progressing, managing his sensory overload, communicating in many different ways to those around him. I can’t tell you how often I now hear him say, “Want some help, PLEASE!” and (knock wood) he does not even get close to an outburst. In his House he has had a few, but that is no surprise: they are making many more demands on him than we are; plus, there is so much structure there that when it is broken, Nat really notices. Last week he was so upset over a change in the routine that he stumbled and hurt himself. (I questioned the staff many times, and Nat, to be very sure of precisely what happened.)

The most comforting thing of all was asking Nat.
“Nat, where did you get hurt?”
“On your arm.”
“But what happened?”
“You got hurt.”
“Where?”
“On your arm.”
Who’s on first??
Before the whole circular echolalic thing could burst into full fruition, I changed tactics. “What did you hit with your arm?”
A long pause. “The wall.”
Ah. So it seemed that Nat had somehow hurt himself by falling against a wall.

I checked with the staffer that had worked with him and he told me something like this: “Nat tripped over his dresser drawers (still open, always open) and fell, scraping his arm on the wall.” The catalyst was that the staffer had had Nat lay out his clothes for the next day, as always — but he did it after his shower this time, rather than before, and so when the clothes were out on the bed, Nat thought he was being asked to put them on. This, of course, made no sense to him, but that is what he does with laid out clothes. So he got upset.

In Nat’s outbursts these days, he gets upset with himself. He bites his arm and screams. He does not go after other people. He has learned not to do that. I truly believe he is biting himself out of frustration — with the event and with himself for not getting it, for not being understood, either. I can’t imagine how terrible that must feel. I remember when I was a girl and my hair was just horrible, not doing the right thing at all, I pulled and pulled it, hurting myself terribly. That kind of rage is so rare for me now. But that is where Nat goes once in a while — perhaps once every six weeks. Not bad, but still, pretty bad.

However, I am just so proud and relieved that most of the time, he manages to find the words and get some clarity or help, before becoming enraged. It takes a real man to ask for help. I bet Nat would ask for directions, too, if he were lost while driving.

Today I attended a summit of the Health and Human Services Agencies with the Massachusetts Governor, Deval Patrick. Held at UMass Boston, the summit gathered together about 300 people who work in or advocate for some sector of the population affected by the EOHHS (Executive Office of Health and Human Services) for example, people who work for Healthcare for All, for example, or the Massachusetts Society for the Prevention of Cruelty to Children). And me. There were one or two Simply Parents there, but mostly it was the agencies and vendors.

The first half of the summit consisted in speeches, from the Governor and a few others who wanted to make it clear that they need help making their government, EOHHS in particular, more responsive to the consumers (families like yours and mine). Randall Rucker, Executive Director of Family Service of Greater Boston gave a moving speech about his travels to Zimbabwe and the utter chaos and horror of life there (in 2005), and yet the small areas of human dignity and innovation he found that were evident everywhere. He used this as an example of how we in that room could build great new systems even in the bleakest of economic times. Then the Governor gave us a directive, which was to find barriers to innovation in the Health and Human Services arena; to discover ways to remove those barriers; and to name what is the next frontier of social services innovation.

One young man spoke up to talk about how he is a success story for DMH (Dept. of Mental Health). He used to be homeless and “out of his mind,” as he put it. He found his way to a program called Vinfen (which Nat has participated in for social outings) and he is completely on his feet, working, and apparently happy. He got the biggest applause, and deserved it.

A panel of people spoke about how to get money steered towards non-profit groups, particularly those that are innovative. A representative of SEIU was there, a union that has partnered with Personal Care Attendants in Massachusetts, to deliver better services in that area. My friend and neighbor Vanessa Kirsch was also one of these panelists, there to talk about her organization, New Profit Inc., which is all about non-profit philanthropy. Vanessa also happens to be married to US Senate Candidate Alan Khazei, which made me doubly attentive to what she had to say (Disclosure: I am a big Khazei supporter, though honestly I believe two of the other candidates, Martha Coakley and Mike Capuano would do excellent work as Senator Kennedy’s replacement. Alan, however, is the most dynamic, has the freshest ideas, is the most grass-rooted, and is extremely progressive in terms of the issues.).

I had the chance to meet the Governor and to give him my book, and to talk for a few moments with him about autism education — it turns out that just last week he had toured a big autism school in the Greater Boston area and he was very impressed with what he had seen there. He said he was glad to see a parent (me) here at this event. I don’t know exactly what he learned from visiting the school but I do know that for a governor at least to tour an autism organization is a step in the right direction for our state. Autism education being on the map in that respect can only be a good thing.

The meat of the program occurred after a brown bag lunch, where we broke into four groups, all of which were to address the Governor’s 3-point directive pertaining to the removal of barriers to innovation. This part of the summit enabled the smaller groups to go around the room listing what they thought were the biggest issues and then to brainstorm over possible solutions.

Several people stood up to talk about the issue of “silos,” whereby one agency does not communicate with the other and so there is confusion and duplication of effort. Others stood up to discuss the need to end the strict territorialism within the departments, to put the emphasis back on the consumers rather than on the budget. Others talked about the disincentives for serving individuals within their own homes and communities — that there is still an emphasis on workshops, dayhabs, and institutional living. I have nothing against those — Nat may have to use a dayhab program if he does not have fulltime employment, for example (and what are the chances he will?), but I definitely see the need for those who can to be given the support to live independently and on their own terms.

I stood up to talk about the parent perspective, namely that we parents often don’t even know where to begin. We don’t know who to ask what. We find that three years down the road we missed out on some major source of support or some important milestone. We have enough to wring our hands about in terms of not doing enough for our kids; but we need help at least knowing what to ask for and when. I suggested a parents’ “Cheat Sheet,” which would map out one step after another as a child transitions out of the school system and into the state system.

Afterwards we all reconvened to summarize what each group had come up with — some items were interesting to me, such as how the human service workers do not feel valued; how even the term “non-profit,” is defined by what it is not, rather than by all the things it does. There was an emphasis on focusing on real, relevant, and measurable results. On involving staff in decisions. On incorporating peers and families at all levels of the decision-making. And of course, of bringing those most affected to the table.

The Governor ended the session with an inspiring quote from Abraham Lincoln: The dogmas of our quiet past are inadequate to our stormy present.” But most inspiring of all was when he said, “Taxes are the price of civilization, but you need to make the case that the money will not be going towards the same old thing.”

Ned’s often telling Ben (and me) not to judge our insides by everyone else’s outsides. He means that people may look a certain way, like they have it all together, etc., but that it’s more complex than that. I, on the other hand, am approaching others from my insides, as screwy and twisted and small-intestined as they are. The upshot is, I see everyone as smoothly as they show, and then I think I’m so different because I feel differently inside than how they seem to be. And Ben, who is in the throes of sixth grade social angst, does just what I do. He is so much like me that I often have trouble knowing how to help him.

Last night I was drifting off in bed, taking inventory of the day. But something was not right. So I had to poke around until I found it; and it was Nat. I was thinking about how much more he does in his House than here, and how that bothers me. I was remembering how much I had to prompt him: “Nat, want to listen to some music?” or “Nat, want to watch something?” And this made me feel bad because I was imagining Post-22 Nat, living some place where they don’t prompt you to do something with your down time because the ratios are more like 2 to 8, rather than 1:1 or even 2:5 as it is here in our home.

Then I got this picture in my head of Nat smiling and rocking and talking to himself in his Adult Home and nobody intervening and that’s that. As I thought of this, Ned was walking around, getting ready for bed and had no idea that I was swimming in such murky stuff so late at night. This realization took me away from Nat’s world for a minute and into Ned’s. I watched him putting stuff away and taking off his glasses, beginning to anticipate soft, welcoming bed, and I suddenly did not want to yank all that away from him.

But — too late. He saw my face and he knew that something more than “Mmm, covers,” was on my mind. “What is it, Sweetie?” he asked.

I could see Nat in his quiet, small grown-man world and it gripped my heart and wouldn’t let go. Such a small life. I couldn’t bear it just then. But how to answer Ned’s question, without plunging too deeply and shrinking delightful bedtime for Ned? “Nat,” I answered. “He’s so — well, he can hardly do anything without prompts, and when he’s on his own, they’re not going to prompt him so much.” I didn’t want to stop there, because if I did I would be handing it all to Ned in one heavy lump.

I waited a moment, and so did he, and then I had a new thought. That’s the disability, right there. I said that to Ned. “This is what it means that he is severely disabled.” It’s not about mobility, or talking, or behavior management; it is about his own inner ability to advocate for himself. To be active, rather than passive.

Yes,” Ned said softly, “He is very disabled.”

We lay there in silence; I, trying to hold up this new but also very old revelation and keep it from smothering me. And Ned, with the covers newly torn off of his momentary peace of mind about Nat, and also probably hoping that this would not lead to an hour’s worth of miserable conversation where he could be reading his Kindle and drifting off to my rhythmic snores.

Nat, Nat. How did this happen, how come this is your life? I saw him with that smile, maybe not even knowing how narrow his world was, and that hurt my heart even more.

You’re judging your insides by his outsides. No one had said it, but I felt it. Just because I would not want that life, doesn’t mean it is bad to him. As the weight of sadness started to lift, I sighed, and also reminded myself that I just do not know how it is for him. That I’ve done everything I can — maybe not everything someone else could, but everything I can. That I’ve loved him deeply and worked for him all his life and now, he is who he is. I have no idea how that feels to him, and I never will. Why assume it is bad for him, just because it would be for me?

Looking at the image of Nat, I see that he is smiling, after all. So maybe I should, too.

What a lovely image to wake up to. Thank you, NancyBea.

Being Jewish is a way that I get to understand what it’s like to be different from the majority. This is the time of year when Christians begin their holiday rituals and it is so interesting to observe apart from it all!

There are all sorts of feelings I experience this time of year: excitement, anticipation, the loosening break from routine, along with a sprinkling of wistfulness, envy, and feeling left out. And I wonder: is this what it’s like to feel autistic in a neurotypical world? Black in a white world? Gay in a straight world?

My students — who are freshmen — are getting so excited about going home for their first holiday (Thanksgiving). One young woman simply sighs and smiles and whispers, “I just love Thanksgiving. Right afterwards, my family gets out the Christmas decorations and we put up the tree!” She is so adorable in her warm happiness, so perfectly on the brink of life, and so excited to be who she is and where she is.

Another student, equally delightful but in a completely different, horn-rimmed glasses and piercings and cynical way, sits next to her and of course feels very differently. “My family is so lame,” she says, frowing . “We don’t put up the decorations until just a few days before. So lame.”

However different their own family traditions may be, there is still this common knowledge that they share, however, that I am not a part of: the how and when you start your Christmas. The only part I experience is buying presents for people, and having time off. And, since I’ve been with Ned, I have been going to his family for Christmas, where they do a very traditional, almost Dickens-like Christmas dinner (roast beef, Yorkshire pudding, mince pie with hard sauce, gorgeous china and old heirloom silver, plus we dress up!). It is lovely. And it has become mine. But it is not something I grew up with, so it is not, shall we say, in my bones.

There was a time when, in my thirties, I tried to decorate for Chanukah, by making these blue and white garlands of ribbons and lights and silk flowers. But having lights on my house made me feel like a pretender, like a Wanna Be. I felt like I was covering something up, or flattening something out about myself: this was not what Chanukah looked like to me.

Chanukah, to me, is not lush and gorgeous, velvet and crystal, evergreen and merlot. It is not proud spruce forests and knee-deep freshly-fallen snow. Chanukah is more of a desert holiday, an oil lamp shining from the dark ruins of a hard-fought war; yellow light on brown stone. Songs in odd minor keys, that give you an uncertain feeling, rather than a deep affirmation of joy. Oily, salty, barely-sweet potato pancakes (potato?! WTF?!), rather than thin golden sweet butter cookies.

Both are beautiful and desirable in their own way. But trying to cross over into the other is definitely a move outside of the comfort zone. For some, perhaps, it is utterly impossible.

Massachusetts readers:
This plea came in from the ARC of Massachusetts. The Legislature is bailing on its responsibilities again. They have ended the year’s session without resolving the budget!!!

Ask Legislators to reconvene — unfinished business can’t wait.
Take Action!

People with Disabilities need help now!

The state House of Representatives adjourned formal sessions for the year last night, having failed to address important business. Those matters that it didn’t address could have helped stave off further damage to the lives of thousands of people with disabilities and their families.

As a Boston Globe editorial today points out, the House “rejected or hacked away at many of Governor Patrick’s proposed cuts [outside Human Services]… and rejected the governor’s request for authority to make emergency cuts to agencies outside the executive branch.” See the Globe editorial here.

This is all bad news for disability services, as it limits the Governor’s ability to spread cuts across a broad variety of agencies beyond the Exec. Office of Health and Human Services. Or as the Globe puts it, the Legislature’s failure to grant the Governor expanded 9C authority “only concentrates the pain — especially for human services agencies” and will have “grim consequences.”

Some of these consequences can be averted if the Legislature goes back into formal session to give the Governor the authority he needs to limit cuts to disability services. We recognize that this is only a short-term solution. Our leaders need to go further by adopting a new state revenue strategy. However, without this step, people with disabilities and their families will be at much greater risk.

Please use the Action Alert to email your legislators as well as Speaker DeLeo and President Murray to request that they:
Reconvene a Formal Session
Vote to give the Governor Expanded 9C Authority
Vote to give the Governor authority to transfer funds between line-items.
Edit this message with a personal story and call your legislators to follow up.

Sometimes I wonder if Nat feels freedom the way I am feeling it today. It is my day off, and I drove downtown and looked for a book to read. Found nothing, bought a hot chocolate and just sipped it, allowing the creamy sweetness surround my tongue and shoot into my brain, and continue on wherever it goes. I felt free.

I was light, not burdened as I often am by a day off. So often I see the day off as this expanse of time, a road with a vanishing point almost invisible, it is so distant. I have to walk on that road, in the hot sun, just walk. Today there was warm sun, steamy air, and a false light that kept blaring through confused clouds and into walkers’ eyes — strange light for late November. Not at all spring light, but the same, thin brightness that shatters your eyes, makes you reach for sunglasses, but just as quickly throw them up on your forehead because it is just not sunny, only bright.

I did not feel like my usual self, heavy with tasks and rules. Does Nat feel the rules as much as I do? His are different; mine are things like: buy only skim lattes, not hot chocolate. Make sure you have a dinner plan and the food to work with. Get your grading out of the way. Make sure all laundry baskets are empty for the weekend.

What are Nat’s rules? Does he know that he is not supposed to stim loudly in public? How does that feel to him? Is it a mild nuisance, like my skim latte over hot chocolate; or is it a gross impingement on his needs?

Is he happier in the freedom of his home, unstructured and unpoliced? Or is he happier in The House, with his lists and rules? He was so eager to return there last weekend; I wonder if sometimes his empty days here stretch before him like a long, boring road, like they do with me?