Susan Senator

I spend so much time thinking about autism; studying it like a college course. I give talks and travel all over the place expounding on autism. The last few days I was in Washington serving on a panel alongside scientists, reviewing autism research grants. The cerebellum was working overtime. Autismautismautismautismautismautismautismautismautimsautismupthewazoo.

I was asked over and over again, what, among other things, ist my plan for Nat when Ned and I are old and unable to care for him (or dead). I always say, “My plan is not to die.” That is not much of a plan. So I spend a lot of time talking to people and programs and agencies about what we’re supposed to do when he’s older.

It’s a lot to worry about. I have spent a lot of his life worrying and planning. Shoot.

This morning as I was running around collecting odds and ends for boys’ costumes, I realized I was having a lot of fun — with and because of my boys. I had to take B to TJ Maxx to get some brown socks to cut up (he was going as Link and needed stuff like brown gauntlets — let me tell you, I know a lot about gauntlets; they are a necessary part of the bellydance cossie:)

So we cut up socks, pinned on his hat, belted his tunic. Nat, on the other hand, was Aladdin — as Prince Ali. Max was a Jedi Wizard. All made out of stuff we had, some of it years old.

I suddenly thought how so much of my autism parenting is planning and worry. So much of my parenting in general is. Baby days. Preschool. Elementary school. Bullies. Tough homework. High school. Girlfriends. College. Independent living. It’s the job description.

But tonight it was just wrapping boys up in ugly old shmatahs and sneaking candy.

Look at my three goofballs. There, nothing to worry about. Except — gotta go through the candy, make sure they are careful crossing the street, …

The issue for autism parents should not be what they did and did not try. That should not be a divisive factor in our community. Why judge? Why not assume that each parent is doing the best they can, with the small margin of exceptions? How can someone judge from the outside what the inside of my family — or my kid — is like? In fact, how dare they?

Some of the comments in my last post just blow my mind. I can’t imagine equating advocacy in the State House with giving up on my kid. It just doesn’t make sense. I also can’t imagine making the broad statement that “most parents” don’t have the time to advocate like that, to give up time to sit in some representative’s antechamber. How the hell does anyone know what other parents do and don’t do with their time? I took my lunch hour to do that. Sometimes I make a trip into Boston specifically to meet with my state rep about Nat and others. If he’s in school, why does that mean that I’ve chosen the wrong way to spend my time?

I just think we all need to tend our own gardens a bit, and work more towards understanding how to solve problems, rather than think that we have all the green grass on our side of the fence.

Sometimes people ask me, “How do you do it?” meaning that I have so much energy, blah blah. I was thinking about this today, because after I taught my class, I went straight to the State House. There I joined fellow parents of developmentally disabled adults, who were also there, as well as advocates. They were sitting vigil, which they’ve been doing on and off for weeks: first, in the Governor’s office, and now, outside of the Senate President’s office, as well as the Speaker of the House. They were on the floor, or hanging around the closed doors. They said that what they were told is that people could go in to see the Senate President Therese Murray “two at a time,” and that the others just had to wait.

So there we all were, pissed off tired parents, with many mentally retarded adults. I use that word non-pejoratively, because it gets right to the heart of things, doesn’t it? You get a visual, which is what I intend. Nat is one of them, and I have no shame in saying that. The shame is on those who use the word “retard” as an insult, and emphasize the first syllable. The shame is on those who never stop to think about how if you just say, “those public programs are wasteful, therefore I don’t support them,” you are taking the easy way out. What else is there? What has the private sector done in any kind of consistent, predictable way? To rely on charity alone is to be at the whim of donations.

The shame is also on those who develop biased I.Q. tests, that ask you to stack cubes a certain way, or trip you up on categorizing. They don’t and can’t test compassion, or willingness to work, lack of guile, or eagerness to learn. They don’t test mastering activities of daily living, nor do they test how far a person has come. They don’t test those who have learned to control their eccentric behaviors, or their aggression.

And the shame is on our leaders. Our legislators, our Governor, who promised so many wonderful things and are not delivering. They are letting our most vulnerable simply go home, if they are even lucky enough to have one. Even Nat, with all of his skills, does so little at home, when compared to his group home.

And perhaps the shame is on all of us, for sending the message that we don’t want any new taxes, when there is no other way to pay for these services.

It’s as simple as this: if you cut services for disabled adults, they have no services. If I must say this, then I will say this. It is not the same as cutting funding for libraries, for roads, for zoos. Even for schools. There is nothing like there is when they are school-age, where they are entitled to go to school. There will always be schools to educate people, in one way or another. But there will not be group homes. There will be no day programs, no way to work. There will be nothing but parents like me, or not like me. Elderly. Fixed income. Working class. Jobless. Ill. Mentally ill.

If you cut the Department of Developmental Services, formerly the Department of Mental Retardation, or if you cut the Department of Mental Health, you cut the services. There will be no services for thousands of people like Nat.

I went into the Senate President’s office and I demanded that she come out, even for a minute, and meet all of these people I said it was an outrage that no one was talking to them. Some of them were even her constituents!!!

I heard that later on, she did come out. Not an aide. The Senate President came out. I am grateful to her for that. Now I hope she and the rest of them will come through.

How do I do it? How do I not do it? I do it because it makes me so angry. We should all be.

I’m on Twitter now, mostly writing short tweets about autism. I’m kind of doing not tips exactly but thoughts, ideas, points of view, aphorisms. It’s not as bloggy as my blog (of course, because there’s a 140 characterlimit, but I like that challenge) and it’s not as in-your-face as facebook. Follow me, you might like it. You can find me @susansenator, of course.

When Nat was a little guy, starting at around age two, he used to memorize books. He did not know how to read; he would just listen to the story and memorize it, with our inflections. This talent was the thing that threw his pediatrician off the autism scent. He would stand there in her office, reciting whole paragraphs of The Velveteen Rabbit, and when I would say, “I think something’s a little off in Nat,” thinking about how he could not answer a “yes” or “no” question, or ask for much of anything except to say, “want juice,” she would respond, “Oh, he’s a little genius,” with such love in her voice that I never could muster up any anger at her for missing the crucial fact that Nat was autistic. To this day, I forgive her, because I love people who love Nat, and because he was, indeed, a little genius. I still think there are hidden, deep reservoirs of knowledge running through Nat, but he keeps it to himself. But he knows. You can see it in his Disney eyes, wide-open and Elizabeth Taylor lavender blue.

Nat was six when he did his kindergarten year in a pre-K class in our town. That was the first and only time Nat was included in a “regular” classroom where he lived. (It took me years to get over the fact that there was no classroom for autistic kids, while there were whole programs, magnet schools, that provided specialized curriculae for LD and cognitively delayed/Down Syndrome kids. This fact ultimately led to my running for School Committee, five years later, where I was resentfully given a seat at the table of folks who created policies for the entire school system. I say “resentfully” because I was considered a “one-issue candidate,” a grave sin in politics. Anyway, I soon proved them wrong, but I certainly did keep special education front and center during my reign — er, terms. By the time I left there were several different autism programs — I’m not saying it was something I did, but I’m certainly glad that the administration saw the light. They saw the autism wave coming, but like the crew in the Poseidon Adventure, and school systems all over the country, it was only when it was upon them.)

There were three aides in Nat’s kindergarten classroom, not assigned to anyone, but by Christmas time I was yelling and screaming that one of those aides had better be for Nat and only Nat, or else he was going to lose all the progress he had made in the last two years in the private behavioral school he’d gone to. I called an IEP meeting at that point and wrote up a curriculum for Nat based on the town’s kindergarten curriculum. I showed the team, point-by-point, what they needed to be teaching Nat and I suggested ways that the aide could facilitate that.

The teacher in that classroom was very good, especially at including Nat. Because of his prowess with books, particularly of the Maurice Sendak variety, she designated him the “Expert in Where the Wild Things Are.” Nat was obsessed with the book, like many children are, and reading it over and over was a frequent way we spent time together, his high voice giddily shouting the words, filling in my blanks.

This afternoon we all went to see Where the Wild Things Are. I didn’t know what to expect; how could they make a full-length feature out of a short children’s book? But they did. There was so much material in the book, explicit or imagined, that the movie really worked. I could see that the Wild Things were archetypes of some sort; maybe Carol was supposed to be Max’s alter-ego, a way that Max could work out all of his sadness, anger, and disappointment with how his life back home was going. The other creatures were friends, imperfect and yet each filling a place in his world. Max back home was pretty lonely.

Nat was riveted during the entire movie. I think that it may have been the stunning, true-to-the book characters and scenery. It also could have been the lovely, haunting score sung by Karen Orzolek; Nat loves music, especially in movies. But my heart tells me that it was the way, throughout the film, the script was true to the book. Especially that in the end, Max sailed back over a year, in and out of weeks, and through a day, and found his supper waiting for him.

And it was still hot.

In English 101 we are starting our last unit, which is all about perfecting the research essay.
I tried to get my class interested in Steamboat Willie yesterday, which Ben and I think is hilarious.

I showed them this cartoon because we had just read Stephen Jay Gould’s A Biological Homage to Mickey Mouse, a research essay with warm narrative components. The essay purports that Mickey Mouse physically “grew down” as he grew up; that at 50 he was more childlike in appearance, and yet, more Rated G in personality. He’s become gradually more innocent, insipid, and boring. If you watch Steamboat Willie, the original Mickey Mouse, you see something more akin to Itchy and Scratchy, minus the butchery.

I could not get my students interested in old Mickey. Most had not read the Gould, either. I tried to get them thinking about the point of the Gould, that there is an evolutionary purpose to our tenderness towards big-eyed, round-headed baby creatures. Nothing. I then bombed again by trying to get them to analyze journalistic research in an actual paper newspaper. Most had no idea what an oped was.

I don’t want to sound like those cynical types who say, “Kids these days are so poorly educated, they don’t know anything, they don’t want to think…” That is not the case. These kids know a lot, but their exposure to knowledge is limited, ironically, by the sheer enormity of the Internet. They also do like to think, but isn’t it the adult’s job to teach them the importance of that skill? I am responsible, and I want to be better at it. I want their minds turned on the way mine was in college, the way mine is.

They remind me of Nat in some way. They are the same age. They stare blankly at many things I say and seem to just want to sleep or be in their own worlds. It has been so comforting teaching freshman in spite of my occasional failures to ignite their passion for writing, because they seem sweet like Nat, and innocent and naive, even though they appear more savvy than he is.

One major difference is that I can always interest Nat in old Disney. Nat likes the oldest Disney movies, rather than the new, whereas my students spoke of how they were influenced by Beauty and the Beast, the Little Mermaid, and the Lion King. Nothing wrong with that, except when you watch Snow White or Pinnochio, you feel like you are watching a real movie, a work of art. They put so much time and thought into those movies. I’m glad that I can appreciate them with Nat, if not my college students.

I had to go to the Apple Store to pick up Twilight Princess (this laptop) whose clicking pad was clicking way too much. I couldn’t get anyone to go with me to get it, though. Not Ned. Not even Max. I didn’t know why at the time but this set off a huge crying jag.

When Max was little, I always took him shopping with me. He loved shopping with me, because he knew I would get him a little treat: at the Stop & Shop, a fresh-baked cookie from the bakery; at the mall, a tiny transformer guy. I learned about transformers from Max. I was fascinated with the tiny plastic fire truck that, when you twisted the parts around, became a robot. So was Max.

I was also fascinated with the way he played. He was my second child, but the first one who played. He was the first little boy I ever really played with — I only played with girls when I was a girl. Back then I would try to organize the toys in bins: a box for all the different toy people figures; a box for vehicles; a box for play food; Beanie Babies; weapons and tools; and so on. Max had some toys that were a combination, though: where, for example, did you file the Chicken McNugget Man? Was he a food, or a person?

Max also played with toys from all different toy species, mixing them in ways I could never imagine. He would take the Playmobil guys and put them with stuffed animals for a picnic. All the parts of the toys would be spread out, put away in the wrong boxes, the wrong bins. And now, of course, the bins are filled with as much fluffy dust as fake hamburgers. It used to frustrate me; how stupid. Here I had a boy who actually played with toys, and yet I wanted him to play with them differently!

So tonight Max barely raised an eyebrow when I told him how I had sweet-talked the Apple Genius into fixing my computer for free, even though I’m out of warranty. I drove to the mall stewing in my self-pity. At home, I threw a tantrum and played alone with my new, clean computer. Max shuffled in, “Everything okay?” What a great kid he is. I am such an idiot.

I realized, with a sudden sharp stinging in my throat, that Max was going to leave next year, and that he already was leaving. I just couldn’t take it.

He’s doing exactly what he should be doing but it just hurt and hurt. There is nothing I can do about it. It is another thing that is just going to freaking hurt. It’s Nat all over again. They do grow up, people say, laughing at me. Oh, it hurts when you drop them off at college. It hurts when you drop them off at The House.

They just grew the hell up. I never thought I’d wish for a chance to pick up little Happy Meal toys again. Or that I’d miss watching Disney Sing-Alongs year after year after year.

I told him eventually how I already missed him, but that he was doing everything right. He pulled me into a deep hug, and for a moment, he was my little boy again. But so tall!

In case you are not aware, there is a movement sweeping the nation that is of absolute importance to autism families, that has nothing to do with cure vs. accept, diet vs. Floortime, A vs. B. It is about all of us. I am talking about insurance coverage.

Today parents, professionals, and legislators met at the Massachusetts State House in downtown Boston to testify at a hearing for Bill H3809, which is about mandating private insurance coverage for autism therapies. Fifteen other states have already passed such a measure, which will relieve school systems of anywhere from $7 million-10 million expenditures in autism support. Not to mention the millions Massachusetts families already spend, as well as their angst and energy.

I was only there for an hour, but I heard one of my heroes, State Rep. Barbara L’Italien, mother of an Asperger’s teen, give testimony about what parents like her (and me, and you) go through to help their children learn to talk, socialize, ameliorate their behaviors and sensory issues, and adjust their bodies when their neurology is working in another direction. L’Italien said there were already 111 legislators sponsoring the bill, which is tremendously encouraging, but the bill is still in Committee, so it needs phone calls to dislodge it from there.

Representative DiNatale from Fitchburg talked about a constituent of his who could not attend herself because of the need to care for her child with Asperger’s. Drs. Rafael Castro and Ann Neumeyer (a LADDERS clinician; LADDERS is where Nat was first diagnosed by the great and powerful Margaret Bauman, back in the Autism Stone Age of 1992) testified about how there are many more children with autism than even Type 1 Diabetes, but that none of these autistic children receive insurance support from Medicare, Medicaid, or private insurance (for the most part). Parents work two or three jobs to get the care their kids need. Despite there being many plans which are extremely beneficial such as Aetna Medicare Supplement Plans, due to the busy daily schedule of life not many people know about them. Which ends up in them missing plans suitable for their needs.

This is an issue that is nationwide, worldwide. This is all about helping families (and school systems, e.g., towns and cities) and most of all, children in great need. This is about fairness. This issue should not be controversial. The law needs to change. Autistic families need help NOW.

Yesterday I gave a keynote at the Midwest Autism Conference in LaCrosse Wisconsin. It was one of the best conferences I ever attended, full of practical workshops and even more useful books. Some people came from as far away as Des Moines (5 hours), but I hear that out there, they don’t really notice the time spent in cars. I found that while I was in rural New Jersey last weekend for my wonderful amazing nephew’s wonderful amazing bar mitzvah, I was really taken with how much driving my sister has to do in a day just to get anywhere. I would never leave my house if I had to drive so much. One long run just to get to a Chili’s.

But that’s just me. And just me is what they paid to see at the LaCrosse conference. I enjoyed the talk, and the questions and mingling, as I always do. But the thing that gets me is that it’s me on that podium. Because no matter what I say, just being up there and listened to transforms me into Someone Who Knows. And that’s just not really the way it is. I always say, “Some of this talk is about what not to do, so…” it gets a laugh, but it is the truth. So much of my life with Nat has been trial and a great deal of error.

So much of my life with Nat has been about figuring out what he needs and how to ask for it. That is well documented. But there is also a dirty little secret (although I’m sure I’ve probably mentioned it once or a dozen times): I get really lazy and discouraged and sometimes I just want to give up and keep him home with me. Build that apartment in the basement with a kitchenette and hire someone to live with him and take him places for fun. And that person will sometimes not work out and I will get depressed about that and just decide it’s only us, in the end.

Oh, it’s not as bad as that. And it makes me sad to think of his life like that, but then again, it also makes me feel relieved. I could just chuck the entire state and federal system if I did that; one big F Y to the Bureaucratic Nightmare that is Post-22.

But I am sometimes a role model and so I can’t say that, can I? I’m supposed to tell you all that it will be okay. That it’s doable. That if you do this and that and then yell about this or that, someone will listen and eventually do the right thing.

I don’t know if that’s true! I don’t want to sell you all a bill of goods!! I don’t know what I’m doing half the time. It’s all so much guesswork and hoping I didn’t forget something or get it wrong.

Today I just want to keep him home with me, but that feels like prison. There’s got to be something better than that, but what if there isn’t?

And so there is. If you live in the moment, rather than in the long run.

I choose this moment, at my sweetness nephew’s bar mitzvah.

It sho is a happy day.
–Mammy, GWTW

Tomorrow is the family’s second bar mitzvah of this generation (the first being Nat’s, 6 years ago). My sister’s son Paul is being called to the Torah. We are headed down to New Jersey this morning to celebrate with them. Nat, Max, and Ben are being called up to the bimah to say a blessing together!

Here is what I’m thinking about, this morning:

The other day was kind of a long one, but one that bore fruit. I had to get Nat to his doc, so he came home from school at 12:30. First we went food shopping, which was great, because Nat is so helpful and skilled in the supermarket. He is not skilled in the way Max would be, where I could say, “Max, go get oatmeal,” and Max would find the right aisle, the right kind (the 5-minute Quaker), the right amount (not the biggest). With Nat I have to actually be in the cereal aisle, right next to the oatmeal, and I have to say, “Don’t get the really big one,” and I have to indicate with my head where to look. It’s like playing huckle-buckle beanstalk, where you hide the classroom eraser and then say, “you’re getting warmer! Nope, colder!” as the person moves inch-by-inch toward or away from the eraser. When Nat finally grabs the right product, you almost want to yell, “Huckle-Buckle Beanstalk!” His skill lies in how well he has listened to my descriptive words, and how much he is paying attention to my body language. Sometimes he has to read labels, as well. From each according to his ability…

So we went food shopping, tiring but exhilarating. Then we had to get Ben early from school, to drop him off at home, because I didn’t know if he had his key. Then we hurried off to the doc, at Children’s Hospital in Boston, which in some ways reminds me of the circles of Hell, particularly as you careen up the spirals in the parking garage. Then there is this strange, slow revolving door that you are not allowed to push. Who thought of such a thing, where children are involved? “Nat, it says not to push! See the sign? What does it say?”

“Do Not Push.” He says this with his hands pressed outward, ready to push hard.

The doctor had something interesting to say. He was wondering if I’d considered a rural, farmlike option for Nat in adulthood. Something that was self-sustaining, like a nursery. Nat’s job could be right there; public transportation and city streets would not be in the picture. Instead, there’d be lots of space, cute animals, benign absorbing tasks like watering everything (ah, flowing water, Nat’s personal version of Lost). It would be further away from us, because we’d have to find a house over an hour away, where all the nurseries and acreage are. But suddenly, I loved the image. It seemed so safe. It felt like there would be so much less to worry about. Nat would be in a Victorian farmhouse with 7 other guys and some live-in staff (truly live-in, so that there would be someone around-the-clock). I wouldn’t have to worry that Nat was being stretched too far, burdened with too many Real World demands. I wouldn’t have to worry about cars. Animals, plants, fields to roam. Hmm. Things growing. Flowers, vegetables, tomatoes, corn, beans. Maybe I’d move out there as well.

That was the part of the day that bore fruit, almost literally. As we walked back to the car, fairly exhausted (an EKG was involved, too; Nat’s meds need quite a bit of oversight, but he smiled throughout the procedure!), I said quietly, “Hmm… I thought you were wearing your jacket.”

“Your jacket! Yes!”
“What? Did you leave it at the doctor’s?”
“You left it at the doctor’s! Go get your jacket!” He was panicking.
So we walked quickly (except for that damned revolving door) back through the hospital maze, all the way up to the tenth floor, and retrieved the jacket — just where Nat said it was. Hurried back, exhausted, piled into the car, and wove our way through the cement Inferno and then through the writhing, angry Boston traffic.

It seems a bit ironic, but with all of the expressive forums we have at our disposal, it is perhaps less common to take the time to write something truly expressive. First I blogged, and found that my writing became less formal, more direct, even junky at times. Then I joined Facebook, and with the small word-limited status screen, I found I had to compress my thoughts and be even more direct, and yet also somehow compelling, worthy of showing up in the column of Friends’ reports. And there was txting, of course, and then came Twitter, my latest attempt to keep up with the Jonesing media-heads. With Twitter, there is actually a character limit (which does not prevent many characters from reporting their latest “thought”). I find myself compressing even further what I have been thinking about, or else stop thinking at all, and merely reporting.

Then I got rid of my cell phone. Okay, here’s the truth: I broke it in half one evening, and threw it away. I did not want to get another txt, I did not want to hear that nauseating little chirp. This is what my hands just did, before my head even registered.

I went for ten days without the damned thing, but then it became clear that I needed to be connected at least to my basic four or five people. But it was blissful. It was quiet. I was cut off from words and I was loving it.

What does all that Twitter- compressing and txt-abbreviating of our thoughts mean? It means that even our own words and thoughts are not important enough to spell out. Or does it mean that we are all shifting to making words less important?

I’ve been taking yoga for a couple of weeks, taught by a friend. I don’t really know what kind of yoga it is, and she does not make a point of going into that stuff. She doesn’t correct poses, she doesn’t teach or lead. She suggests. She reminds you of how you can stop for a moment, and redirect your energy from your thoughts down into your belly. She makes me realize that the brain, the origin of our words, is just that: one part of our bodies, not the leader. The part that distances us from our bodies and gets us to analyze and find meaning in everything. Which is necessary and miraculous, but it is okay to leave that for a while sometimes.

I used to scoff at yoga. I thought it was phony. I shrugged off anything “New Age,” as if it were beneath contempt, because it was not traditional, and also because it is older than traditions I knew of. I guess I was threatened by it, or perhaps I just did not feel the need to get out of my head.

But I realize now that I needed to get out of my brain so much. How many times would I massage the same problem until it hurt as much as the first time it bloomed? This was called OCD by a doctor, but what good did it do to know what it was called? I still did it. I was still carrying around a little knot of pain inside, that nothing, no medication could dissolve.

I have often felt that labeling, or naming, gives something its power. A doctor tells you your child has Autism, and suddenly a whole nightmare opens up before you. Your brain rushes in with stories of why that is bad, and what it means. Your eyes start to reconstruct your own child, that baby that you held from the very beginning of his life, until your vision blurs and you don’t even recognize him.

We are told that the label helps. We can now deal with this. We can dissect it, divide it into channels: therapies that will work or ameliorate; school programs that will help; friends that will understand; books that will inform. More structures, more words.

Words are Nat’s enemy. Nat is forced to divide his existence into words, which I imagine feel to him like gouges on a colorful painting. Nat approaches the world from his center, from his own being. He experiences it all through all of his senses. I have no idea how his senses feel to him. I can pretend I know how my other sons’ senses feel to them, but the truth is, I don’t. The Other is unknowable. There is only the self, and the rest of the world around us. Nat has always known that. Aut-ism: being unto ones self. Nat is just himself, until he is forced to be other.

I have been believing in the primacy of the word, of the brain, over all else, for so long. I guess I’m finding now pockets of silence, and ways of resting within them. Maybe I can take a page out of Natty’s book, so to speak, and connect without words, without analysis, or distance. Just be.

What are you doing under that tree? A mom asks this of her child.
I was dividing seven into twenty. With seven it starts repeating after the sixth decimal…
The mother smiles in awe at her seven-year-old boy. Did you play with anyone today?
Not really. He looks up at her with his beautiful clear-green eyes and smiles.
— A paraphrasing of a new, fascinating book by Katherine Beals: Raising a Left-Brain Child in a Right-Brain World, Trumpeter Press, 2009

Here is a book that you will want to read: Katherine Beals’ Raising a Left-Brain Child in a Right-Brain World. Anyone with an alleged quirky child, or in fact anyone who is allegedly quirky themselves should really take a look. Katie, a friend of mine, really knows firsthand about the problems with school curricula that do not take left-brain issues like the ones listed at https://www.werecover.com/blog/cymbalta-withdrawal/,  and alternate learning styles and social challenges into account; she is the mom of one such quirky child. She intelligently and sensitively raises all the right questions about how we need to accommodate square-peg kids and bring out the best in them. With chapters like, “Hindered by reform math and other trends,” and “Playdates, friends and family life,” and “Adrift in today’s classroom,” Katie really nails the topic of the odd, often gifted child who is misunderstood, and how to better understand him.

What are you waiting for? Go get it!

Being 50-75% there does not feel good; however, I think it’s a good idea for me once in a while to remind myself of what it feels like to be far less capable than those around you. Or to appear to be so. For this must be how Nat feels around many neurotypical people. But look how gracefully he deals with being that different. Is he aware of his difference, and simply used to it? Or is he aware, and frustrated? I would say both. And I admire him all the more for his sunny disposition. I don’t believe I would be nearly as sweet.

I took a bellydance workshop yesterday with Bellydance Superstar Amar Gamal, who also performs with the Bellyqueen troupe. She was wonderful. This was the first Bellydance Superstar workshop I’ve taken that was solely about Egyptian dance (not tribal, not spinning), so the focus was entirely technique and combinations. It was skillfully taught, and Amar is a very warm and accessible teacher.

I consider myself to be about early Intermediate, or perhaps a strong Beginner; this workshop was at least Intermediate +. I struggled to keep up, and for the most part I did in one way or another, but not beautifully. I suppose that is what it means to be almost Intermediate level. A few years ago I would not have been able to do this workshop at all.

The difficult aspect was the layering of one move on top of another. For example, we would do a scissor step (one foot goes forward, then backward, while the other foot drags you sideways, so you can move). Then, scissor step on tip-toe. Then, add some hip lock to it (side-to-side). Then shimmy while you are doing that. Also, arms should be moving together in semi-circle, one side to the other; hands and arms should be slightly tensed, full of energy and holding a strong line from your body. All this, while remembering the move that comes before and then after, such as a hip lift, or a pivot turn. Then go back and do it towards the other side.

I am not complaining, I am just in awe of those who can do this (like most of the women in the class). I could do 3/4 of the step, and I could put it all together in a dance move 50% of the time. My arms, unfortunately, were 25% there. So I tried to do the fake-it-till-you-make-it, and I tried not to feel bad about it, but I did have that burning in my throat that I used to feel in 3d grade math.

I took notes, however, and practiced for Ned when I came home, even though I had shooting pains in my right heel and lower back. I iced everything, and slept in the boot (which keeps my foot flexed as a treatment for the plantar fasciitis in my heel). I will rest today, but tomorrow — more of the burn/ice cycle. It’s the only way to improve. I wonder what Nat thinks when he wakes up, facing school, and all of the demands on his body and brain. It only makes me admire that kid even more for how far he’s come.

When we first taught Nat to ride a bike, at age 7, (actually it was my dad and Ned who taught him, I just stood by, tensed with excitement) we learned a lot about the intricacies of Nat’s psyche. At 7, Nat was becoming mischievous and very apt to push to the edge of any rule. He was fascinated with rules, and with breaking them. He felt profound joy in consequences, no matter what they were. Rip that photo of Daddy? Time out. Yay!! Pee in a plant? Help clean it up. Hooray!! It seemed like there was nothing that we could use for leverage (nothing that would last in terms of efficacy). Nothing worked long enough so that we would end up the authorities and he would end up knowing he had done wrong– feeling he had done wrong. His preoccupation with testing and danger was worrisome because it was so clever. The harder we tried, the more intense and charged it all felt to him, and the more we were stimulating him.

I think of Nat’s ages of 7 and 8 as when he began to develop difficult behavior, and ultimately, the aggressive behavior that got him in so much trouble when he was 10, and even as a teen. Nat’s periods of aggressive behaviors come and go, and are very different from how they were when he was 10, but there remains that characteristic of stimulation-escalation.

I have seen, over the years, that our responses are intricately tied to Nat’s escalation. Everyone in Nat’s life — his family, the teachers and the House staff — experiences Nat’s rare outbursts as happening “from the blue.” That expression — out of the blue — is one that has battered my ears ever since Nat was 8. There has never been a teacher who could figure out the “antecedent” to Nat’s outbursts (screaming, biting his arm, pinching someone). Every single person Nat has spent time with has tried to tease it apart: “Well, I think it was because the music on the van was turned down to low,” or “He gets this way when the light changes, when the seasons change,” or “He could not find his shoes.”

Naturally, when anyone gets upset back at Nat, he becomes more upset. We call it escalating. Once Nat is charged up by something he has done, it only gets worse. He cannot pull himself back from the brink except with enormous effort. It’s as if he is thinking, “Well, I must be horrible for doing that, which makes me feel horrible, and so there’s nothing but horrible.” He is imprisoned by his actions, he is flailing out in an utterly impotent attempt to break free, but it only makes him further trapped, like Satan frozen in the ice at the very bottom of Dante’s Inferno.

This dynamic is not unique to Nat. Being trapped in a self-destructive behavior is the universally human condition. The spiral downwards. Taking no prisoners. Hung for a lion as a lamb. I understand what Nat is feeling more than he knows. I am prone to the same fatalism. Once I slip, I continue falling. I have a terrible time trying to grab hold of something and pull myself back up.

How can I teach Nat to do the very thing that I struggle with myself?

To prevent Nat’s outbursts, we model effective behavior. We all scramble to help Nat by repeating things like, “Nat, you can use your words and say, ‘I want the music louder, please.’ Or, “just say ‘Help me!'” Whenever we remind Nat about the words he can say, he then says them immediately, but of course, the moment has passed. We are left hoping he will remember next time, and of course, 99% of the time, he does. Most of the time he is not bothered by any of these things; he takes most irritations in his stride, continuing about his day with a cheerful mellow attitude and a ready smile.

In our home, neutral is a distant dream, especially for one as emotional as me. My straining, fear-filled breath and tensed body set him off further. The escalation of Nat’s anger and upset are completely symbiotic with mine. But I have learned how to “act” neutral, how to pull my immediate self a few feet back and present Nat with Ghost Mommy, a brittle Stepford Susan, which kind of works. I know how to direct him to the couch, set a timer for a minute of calm behavior, and how to then welcome him back if he has emerged calmer (otherwise, the timer cycle is set to zero once more, and so on. It usually only takes one or two repeats before he is okay again).

Slowly but surely, his outbursts have become less severe. But not more predictable. Yet, Nat has learned how to detect the hot spot in the distance and take the right path, for the most part. Week after week his teacher tells me how he expresses himself and thus staves off anger: “The velcro, the velcro,” he repeated, pointing at a tiny piece of velcro on the floor, which had become detached from the wall calendar. The teacher picked it up, and all was well.

Nat regulates himself before trouble builds. I wish he could teach me how he does it.