Susan Senator

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.

When our kids have disabilities, on the one hand we believe that fantasy, dreams, and plans are no longer possible. Special classrooms bump out exclusive preschools, the would-be football hero, even the class clown, is not to be. Prestigious colleges shrink away, perfect marriage — busted before it was even foreseen in Heaven.

Are you depressed yet?

The thing is, we should never have those pictures in our heads in the first place. Who says that this is what we get? Whoever made that brochure sending us to Italy (you know, the trip where you end up, by accident, in Holland), lied. It was all a marketing ploy, to get you to buy fancy Italian strollers, to match your fancy imported car, to go with your Ivy League life. Your baby is supposed to match your carefully groomed self, your therapy-smoothed insides, your product-smooth hair. Our babies, on the contrary, are real life. Products of complicated blood and tissue and sophisticated neural circuitries — it’s a wonder it comes out “right” any time!

It truly is a wonder, that we have life at all. We forget, living in our beautiful homes, that nature is red in tooth and claw. Primal. Raw. Remember your child’s birth? Enough said.

I’m not usually this cynical. So, maybe my fantasies have to become fanatasies, in other words, dreams shaped by what Nat is like. Okay, so no grandchildren from Nat. Yes, tragic. The world could use some extremely cute little blond Nat babies (oh, no, tearing up) but — not every adult reproduces, okay? And as for Ivy League: well, that’s not all it’s cracked up to be, either. Besides, how many super-educated kids come back home to live with their parents these days? You shouldn’t know from it.

My latest fanatasy looks more and more like it could fall into place, knock wood. (Take it from me, the descendant of shtetl-dwellers who ran for their lives during one pogrom or another. We autism parents always should keep a little wood handy, for when things are going well.) Today I met with a couple who founded an organization 20 years ago, that helps disabled adults put together housing. These are small group homes with a couple of live-in staff (not 24/7, but enough).

The organization’s staff and resident turnover rate is low. Live-ins are often promoted to house managers. The set up is similar to Nat’s current House, and also the way his school does their adult housing. I am becoming fairly conversant in adult service lingo, which makes this process all the better.

This is the third set-up I have discovered, right in my area. Group homes in urban locations (my town is urban-ish, with access to public transportation and very walkable, interesting streets) so that the residents can get to jobs, day programs, volunteer situations, all without relying on paid transportation.

My fanatasy is that Nat would be able to get a job similar to one of the 5 (five!) jobs he now has. So far he has learned to do cafeteria-serving; janitorial stuff; making boxes; delivering messages; and filling orders for classrooms, as well as his volunteer work with Meals on Wheels. My Natty is a Nat-of-all-trades, at least of trades that many 19-year-olds find for themselves, disabled or non.

The best part is, Nat loves to work. Nat does not even know that his work is “beneath” him. Therefore, it is not. And as for housing, I have been dreaming, as of today, that some of his social group friends could also live in one of these homes along with him! Imagine how happy he would be, to get to live with his buds, just like many young men who get a house together somewhere after college.

What does an adult need to be happy, to live a life and get along in the world? A home, friends, work or other productive activities. There is no need to see Nat’s future as a nightmare, because all that other stuff is just a dream for all of us anyway.

Sunday night was a bit of a trial for me. Nat did not make his nightly call, so I called the House instead. The staff person was kind of quiet and not only difficult to hear, but he just didn’t have a lot to say about Nat’s day. There was nothing outwardly wrong with what he did or did not tell me. I heard about Nat’s mood that afternoon, and where they went for fun (they went apple-picking). But I did not feel satisfied. The thing is, I don’t even know what to ask, I only know I’ve heard it when I hear it. I mean, when a House staff person gives me a certain feeling about Nat, based on a few things they tell me about his day — that’s when I know I have heard enough.

I asked to speak to Nat. He was the worst, most spacey I have ever heard him: completely out of it, unable to answer most of my questions, dragging out the word “ye-es,” even when it didn’t make sense to answer “yes.” I got that downward tugging in my face, and my mind raced quickly but came up blank. “Give the phone back to —, Nat” I said, again and again, wanting to speak once more to the House guy. Nat could not do it. Or would not? He just kept saying nothing, or “ye-es.” It was horrible. Finally I said, “Nat, I’m going to hang up. Goodbye, Darling. Nat, hang up!” He would not even hang up. It was a terrible feeling, hanging up anyway.

I then called the House back. I asked them to check on him, to tell me how he seemed. But the staff person thought Nat was fine. Maybe tired. I got off the phone. I was not satisfied. I was starting to get angry, which is where my Nat-worry usually goes.

I called again. I asked them to check on him again and call me back. Then, apparently, the nurse came in just then to do a weekly check on everyone. I asked for her to check on him. Then I had Ned call them back. Call number four from us. The nurse told Ned she thought Nat was fine, just a little tired from the apple-picking.

I wrote a fiery email to the House Manager, which I did not send. Instead, I emailed him briefly, merely asking him to call me when he had the chance. Very restrained for me. I didn’t talk to him until today, which was a good thing, because by now I was much calmer and could separate out what it was I needed from them. The Manager was very good at figuring out what needed to be done about Sunday night (from the staff perspective) and also reassured me about a number of things. Also Nat was himself again by Monday (although he’d had one of his rare outbursts that morning, about a pair of shorts with a broken button, under the bed. the House Manager checked under his bed, but there was nothing. But when I heard about the outburst, I went upstairs to check under his bed here, and sure enough there were a pair of shorts under there. No broken button, but I’ll figure out what was wrong with them.).

I am learning that my instincts are pretty good but my impulses get me in trouble. I feel that Nat is well-cared-for there at the House, my gut and my brain tell me so, but sometimes I trip over my wildfire temper. Anyway, Nat is worth the fall.

There you are, looking so happy to have found the Richard Scarry book Cars and Trucks and Things That Go from so long ago. That book was one you had memorized, and recited again and again while you walked in circles at Aunt Rhoda’s house, on that successful Thanksgiving 18 years ago. I would get the diagnosis just two months later, but the darling circular repetition did have an edge to it, I do remember that. So much fear slicing, but subtly hurting, like a million tiny paper cuts, into my consciousness back then. So much fear, knowing that all was really not.

On our walk today I felt grateful for that tiny gesture, your finger pushing the “Walk” button without any prompting from me. Anyone else would have missed that pink fingertip moving so wisely, but I am ever vigilant, my attention to you drawn like a sword against the world. My heart open, soft as a pillow, ready to rejoice at the smallest advance, the step forward. This is something I learned probably in Aunt Rhoda’s noisy TV room. Maybe even much earlier than that.

So, the finger on the button. But yesterday, even with that flashing “walk” sign telling you to walk, that blue Prius had to make her right turn, she just took her opportunity, without seeing your bright green tee shirt, or that deceptive white lit up man who beckoned with evil banality, mechanical indifference: Sure, you can walk. Go ahead! I take no responsibility for you, I can only do so much.

Me too.

Yesterday we went to see “9,” a new CGI sci-fi movie produced by Tim Burton, about evil robot-ruled earth and the nine small sack people who remain. The movie was, according to Ben, “1/4 Myst, 1/2 Wall-E, and 1/4 Little Big Planet.” There were also strains of The Matrix. Interesting flick, but not emotionally compelling, except at the end, where the question of missing loved ones came up.

After dinner, although we started out giving our critiques of the movie (with Ben saying, “Everytime we see a movie, we always end up criticizing it for three hours!) we found ourselves in a lively conversation about the houses of Harry Potter’s school Hogwarts. Max began it, by stating that he would have been in Hufflepuff. Hufflepuff? I asked. Not Gryffendor? I looked at Max, with his golden mane, his physical beauty, and his inner strength, and I felt disappointed that he would pick Hufflepuff rather than what I thought of as the “best” house. Max explained that Hufflepuff was all about being loyal and true, whereas to him those in Gryffendor were headstrong. Given this description, I could agree with Max, and I realized that, yes, even though I always see his potential and power, his rock-star looks, Max has never been interested in any of that. Max’s true self has always been about quietly knowing what was what, and not leaping up to brand the moment with his views.

Ben then said that he’d kind of like to be Slytherin. I felt a moment’s concern, but then Max pointed out that Slytherin was not actually evil, but ambitious and political. I could feel that Ben could have been in Slytherin, but maybe more Ravenclaw, because of their intense cerebral abilities and their focus.

I said that Ned was Gryffendor, because he is my prince, but when I think about it now, he might be Hufflepuff like Max: steadfast.

I said that I was fascinated with Slytherin, and would love to be named Bellatrix LaStrange; I also think alot about who does what to whom and why, but I don’t think that makes me a Slytherin. Maybe I’m a Gryffendor, because I like my own ideas best and I like to put them into action. Maybe Ravenclaw, because most of the time I dream things up and then go back to my laptop.

The conversation was coming to an end, when I brought up Nat. There was silence, small but excruciatingly awkward, yet I persisted. Nat was not here with us, but he still has a personality and he deserved to wear the Sorting Hat like the rest of us. Ben muttered, “Hufflepuff,” but without conviction.

“Gryffendor,” I said. “Think about it. He’s charismatic; he always attracts people to him, people who believe in him and adore him. He gets into trouble with his passions and single-mindedness. More silence. I said, “And, you know, sometimes I get a glimpse of who Nat could have been if he were not autistic.” Max and Ben looked at me, processing this. I did not elaborate; nor did I give up. I am determined not to let Nat slip into the background, the family netherworld, just because he is not with us all the time, just because he can’t converse with us when he is.

Then Max said slowly, “Yeah, I can see Nat as a Gryffendor.” I felt ridiculously elated hearing Max talk about Nat, think about who he was. And then Ben quietly agreed. The conversation gently moved on, but something good and powerful remained.

Wow. I think Nat may have found an alternative to Disney videos. I heard him saying to himself, “To the left, to the left,” and I said, “Nat! I know what you’re singing…” A quick foray into YouTube and my 19-year-old son was mesmerized. Well, well, well. They do grow up.

If I were the king of the world, I tell you what I’d do: I would pay caregivers/service providers a lot more money. Any kind of caregivers. Babysitters. Daycare providers. Teachers. Aides. Nurses. They should earn in the same ranges as CEOs, rock stars, and ballplayers. They should earn more than CEOs, rock stars and ballplayers. It just doesn’t make sense, that those who need care, are given the least of it. In schools, paraprofessionals work with the most complicated kids while someone highly qualified consults or oversees. In group homes for disabled people, the direct caregivers are those who really need a job and may not necessarily want to work in that profession. They may be underpaid, undertrained, and unmotivated: a perfect storm of Un-care, or care-lessness. It’s like the Woody Allen movie, Sleeper, where the scientist says, “It’s precisely the opposite of what we now know to be true;” it is the exact opposite of what it should be. Ballplayers. Ballplayers! And rock stars! “Any jerk with a guitar can be a star these days,” is what my mom used to say.

It’s because it’s not glamorous to care for others. Unless you have a flying umbrella that talks and you can jump into your chalk drawings on the sidewalk, you had better be ready to be shat upon. Sometimes literally.

How do I make disability glamorous? How can I make people notice and not look away or deride? How can I make people care?

Again, what is at the bottom of this is that people are attention-limited and they cannot devote energy to too many causes. It’s true: while I spend a LOT of time reading and thinking and writing about disability/autism there are many other worthy causes I don’t even glance at int he papers. I did not listen to Obama’s speech on education. I barely know about the floggings in the Sudan. And I call myself a caring person.

I had coffee with a director of a large charitable organization today, which contributes a lot to disability quality of life projects, and the news was not good. The money is just not there like it used to be. So the care will be even more spare. How is that okay? And later on, I had a meeting with our Department of Disability Services liaison, and again I heard that this was the worst year for funding in the 18 years that she has been working for the state of Massachusetts.

I drive through poorer sections of Boston, or walk around New York, and I see the disabled and the homeless, bent, staggering, ragged, in wheelchairs on corners with boxes and hand-lettered signs that ask for help. I pretty much always help them. I roll down my window and slip them a dollar or a five. I have been blessed by some of them for this, and that embarrasses me. I do this because I figure that’s where money really ought to go. I think, like Melanie Wilkes, who tirelessly tends to the ravaged soldiers that make their way past Tara: “One of them could be Natty. They could all be Natty.” There but for the grace of God. And funding.

We just got back from a mini-vacation on the Cape; it was our goodbye to summer. And what a goodbye it was. Aside from bathing in the ocean and the sharp golden light of approaching autumn, we were also immersed in one another. My family has swollen to six at times, because Nat is with us on weekends and Hannah, Max’s girlfriend, is here perhaps even more often. I don’t think people should be careful of what they wish for: I had wanted a fourth child for the longest time, maybe a girl, and now — !

So we spent three days playing all together. I took 15-mile bike rides to the same old places — bay, marsh, pond, woods, ocean, dunes — feeling as excited about their familiarity as I had about Paris’ unfamiliarity the month before. One morning I took Nat on a bike ride that was just a 1 1/2 mile loop, short because he seems to get anxious when we go for too long on the bike. His self-talk changes when he gets anxious; he inserts a few hums that sound more neurotypical than his usual Nat words, but you can feel the anxiety in their breathiness. So I don’t push him too far, although he really rides well and I think he could — and will — do more at some point.

At my request, Nat’s teacher had made a small laminated booklet of “Beach rules” for Nat, reminding him of things like others’ personal space, and how to walk quietly around the beach. The last year has felt like a boom time for Nat, a time to learn, to try new things. So I did try periodically to remind him of quieter beach talk and I also reined him in when he got too close to others’ blankets. Ben took his cues from me and tried just as hard to pull Nat back, perhaps with a bit more zeal than I would have liked. A lot of Ben’s former anger resurfaced on this vacation, but it was mostly appropriate and controlled. He would say to me, with glowing eyes, things like how embarrassing it is, how Nat just doesn’t learn, how we should tell him this or that. I listened a lot, and found myself agreeing with him at times: “Yeah, I know! I wish he would learn that. I think he will some day.” Ben would disagree, and then I would point out the things that Nat has learned in just the last year. I would also tell him, “Ben, you know, autism is really hard. Sometimes it is horrible. I know that. I know that you have a lot more to deal with than other kids your age, and I am sorry for that.” For this is as true as my love and respect for Nat. Both things exist in one family, in one heart.

I felt my breathing become lighter as I said this to Ben. I found that validating him was not only something he needed but something I needed as well. A few days later Ben even joked about how he feels about Nat. When he couldn’t find his watch he said, “Someone must have taken it.” I asked him if he meant Nat. He said, grinning, “Nah, but it would be awesome to blame him and have him really have done it!”

Ben seems especially bothered by Nat’s issues with privacy, that is, masturbation. Ben hates the whole pillow thing and talks about it with disgust. Again, I can’t blame him. I have to balance Nat’s needs and dignity with Ben’s — and society’s — boundaries. And with safety. I am the eternal juggler. But I’m a mom; it’s my job. So just the other day, when it was rather clear what Nat was thinking of doing for the next few minutes, just before I reminded him to do that in his room with the door closed, I also handed him a piece of paper towel and said, “Nat, use this, not a pillow.” I explained it a little bit, very matter-of-factly. Ned shrugged, not sure that this would have any affect on Nat. And I felt bad about Nat’s business being discussed, and that this was done in front of Ben — a pre-teen with a very large sense of shame — but then again, our family is unusual, I just got finished telling Ben that. What else am I supposed to do, if I want to teach Nat sanitary and safe behavior, in the moment, when it will make sense to him? What are my choices here? Bad, either way. But the lesser of two evils is for me to try very very hard to correct Nat’s bad habit of pillow-use. I have to think of Nat’s safety out in the world, do you understand???

I think it is going to improve one of these days because Nat, too, seems very conscious of privacy. Anytime his hands start moving down to his lap he looks to see if I’m watching. His eyes widen if I am. Then I say, firmly but quietly, “Nat, do that in your room with the door closed.” I do this every time. And either he stops or he goes to his room. He is very aware. I feel like it is only a matter of time before it all clicks and becomes a new habit, just like when he was five and always, always pooped in his pants standing by the window, even though he knew how to use the toilet! I even tried moving the potty to that window. Nothing worked until we went to Disneyworld and I showed him the toilet and said, “This is where you will poop, and when you do you will get a Cadbury creme egg,” and I showed him the egg. And he went right away and pooped in that toilet.

It is quite the conundrum, trying to be a champion for Nat’s rights, and Ben’s rights, while at the same time, having to deal with these problems that are usually so private. I am just doing my best, though it feels like I’m in a cave without a flashlight at times.

Happily, there are organizations that exist solely to promote understanding and awareness of autistics’ rights — and information that can help. Autism National Committee is one of them. On their website they describe themselves as “The only autism advocacy organization dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.” Their conference is September 25th-26th in Nashua, New Hampshire. I feel very hopeful that truly humane and helpful solutions for families like mine are on the way.

In the meantime, I am treading water, holding my sons up while the waves crash around our heads and the rocks are tossed about our feet, trying to teach them how to hold themselves up in the surf, and also trying to have a little fun myself.

A long time ago, we gave Nat a bar mitzvah. This was before special organizations like Gateways, or other special needs religious school curricula were as common as they are now. I got together with a few other parents back when we belonged to a synagogue and we formed a Special Needs Task Force, to get the temple community to understand that they were inadvertently leaving out an important minority of the congregation. They needed to make aides available. One of Nat’s teachers became an aide in the Sunday School class, and Nat was fully included that year.

It is difficult to put your finger on what our kids get out of Sunday School or religion in general; that is true of most kids. These days I don’t get much out of mine. I identify with Judaism as a faith and I definitely believe in God and good; but I don’t want to be part of a congregation. I really don’t like the way I feel in religious services. Now and then I’ll go with my mom, and every once in a while I’ll feel something special and moving, especially when speaking or singing in Hebrew. The ancient Hebrew prayers feel real to me.

I think Nat feels the same way, with one big difference: he loves being in temple, much the way he loves being in any kind of group. I often don’t feel good in groups. It’s funny, that stereotype of autistic people disliking crowds, noise, others’ company: you just can’t lump together “autistics” any more than you can lump together “Jews” or “Republicans,” for example. Nat loves groups, he loves noise, he loves parties.

At temple, however, he also tries to sing along and he definitely knows many of the shorter Hebrew prayers. I never did try to teach him Hebrew; that seemed too arduous. But he picks up on things, especially music, so he really enjoyed Sunday School.

The problem was, the year he was to be bar mitzvah’ed, he was left out of the choosing of the dates. The choosing of the dates of bar mitzvahs is important; your date dictates what your Torah portion will be, and what the theme of your Haftorah will be. But every Saturday was chosen already. They forgot Nat. All that was left for Nat was a mid-week bar mitzvah.

It broke my heart. But, like most things that piss me off, it spurred me to action. I planned a bar mitzvah without a temple, without a congregation, and it turned out beautiful. Nat was just perfect — give or take some giggles.

Soon after the bar mitzvah, my book came out, and I gave a talk somewhere, and met Cathy Boyle. Cathy had just developed a Catholic Sunday School curriculum for autistic people. She and I were on the same page (different Bible). Today I got word that she has a second part of her curriculum, and that it is available here.

No child should have to be without a religious background if they have that side to them, and if it is important to the family. People like Cathy (and the folks at Gateways) make it that much easier for families to go about their business being just families. L’hitrot.

Extreme Sports Camp for Autism, the wonderful camp in Aspen Colorado that Nat has attended twice now, will be featured on ABC World News tonight!! Autism Speaks Board Member Sallie Bernard is a co-founder of this hugely successful rec program for kids on the spectrum (all the way up and down, whatever that means), and she just told me that ABC did not film when Nat was there, but that I could send in a photo of him for their website (she is in the process of updating the site). I urge you all to watch and consider this program for your child. They do it well and they do it right.

Hot off the press, this is a book of poetry that will make you think, but will also make your heart light. Take a look into the mind of Nat’s grandpa…

The successes of the Aspen camp, two very different years of Nat’s life, makes the wheels of my fantasy bus spin. He should live a life where more of that is possible. He is competent and capable in the physical realm, and eager to learn. Why couldn’t he live at least some of his adult life in that kind of environment? Maybe eventually he could be a counselor-in-training at the Extreme Sports Camp, or one like it. Or, as Ned suggested, work for the Parks system? What would it take, let me see:

– A job, to earn his stay.
– A place for him to be.
– A supervisor/support person who could direct him to various tasks.

Here’s what I imagine: Nat would have to help maintain a National Park campground. He already knows all sorts of maintenance and cleaning chores. So his job, what he gives to the Parks, the employer, would be that he could clean anything. He could sleep in a bunk somewhere, where other workers sleep. These people would have to be honorable and helpful, and that is something I would really have to explore. It’s always the people. The others are the problem. People make or break your life, especially if you are more vulnerable, like Nat.

And for the rest of his time, he could climb, hike, swim, and walk and walk and walk among trees, sunshine, and little critters. If he had a designated area that he was familiar with, he would not leave it, he would not go beyond the perimeter. I know Nat, and I know this about him: he does not bolt. He is a guy who knows where Home is.

This existence would not have to be all the time; it could even just be a few weeks out of the year, where Nat goes off to the West and works out there as summer help. We would not have to worry about street lights, or traffic. It would be like a vacation, and yet he would be doing all sorts of odd jobs, which are what he likes. I can ask him to do anything, get anything, go anywhere, and he does, eventually. Here’s how it went this morning, for example: “Nat, go get me the laundry out of the dryer and bring it up and help me fold.”
“No fold.”
“Yes fold. Then you can come back downstairs.”
“No downstairs!”
“Nat come on, please help me!”
And he does. And this is something he didn’t really want to do. But if he were in a place he enjoyed, like a camp-like setting, and he knew that after he finished he could go hiking on a steep trail with so-and-so, then wouldn’t he do it?

The real challenge, as I see it, is getting Nat to eventually realize that he does not always need to be the one who is taken-care-of. He can also be the one who takes care of something. That is a leap. But because he made the leap from being someone who did not see the value of playing with others, to someone who loves basketball because of being with others, I know that these leaps can be made. It takes exposure in a safe environment, and repetition of the exposure, until it becomes something known and expected. It also takes positive feedback, where he feels good about his participation.

So to help Nat grow from being passive and waiting for others to help him, into an adult who accepts that he has responsibilities that he must attend to, both for his own wellbeing and for others — that is the next big step, as I see it. The first steps have been taken; he already knows very well how to go to a job and do what is expected of him. He enjoys it, and he is dependable. He knows the happiness of being a good employee, in several different work venues (Meals on Wheels, Papa Ginos, and message delivery within his school).

Now he needs to learn, to internalize, that he is the one to do this job. That he is important, a part of something — just as he is now learning that he is part of a team. He needs to shoot for a basket when he gets passed the ball. That light went on at the State Games this winter. So my thinking is, you get the lights to go on by flicking them on and off a whole lot. You give him experience after experience — long or short, go for miniscule victories, see victory and triumph in the tiniest steps — so that he can store that in his repertoire. From repertoire to resume. Isn’t that what we all need to do to grow up and take our places in the world? But it all starts with just the right kind of experiences and exposure. Fearless exposure. Exposure that is happy with baby steps.

“Declare victory, then get the hell out,” as Ned says. But then, as soon as possible, go back in.

A few pics of Nat at his Extreme Sports Camp in Aspen last week. This is the second time Nat has attended this wonderful, extraordinary program. Photos by Ali Iddings, who accompanied Nat there. (Without us!)

Nat went to the Extreme Sports Camp for Autism, in Aspen Colorado. They don’t call it “extreme sports” for nothing! Take a look at what this guy did! Photos taken by Ali Iddings.
… See my Tabblo>

Lately I have had to consider Nat’s areas of skill, because I’ve been having so many conversations about what sort of living arrangements would work best for him. Clearly he doesn’t need 24-7 supervision. Nor can he live entirely by himself and be responsible for everything in his life. Nat is somewhere in between. I see him as being able and willing to have roommates; to prepare his own food for the most part; to eventually take his meds on his own; to keep himself and his place clean (for a guy, that is); and to spend his day doing part-time work, and part-time leisure, activity, fun (with others and alone).

This has been an interesting exercise for me. Instead of feeling depressed (other than how to manage The System), I feel energized and happy. I feel doors opening for Nat — provided I can find the correct buildings for him. People are always so enthusiastic about his skills, his achievements, and of course, his personality. It makes me feel like there will be good things for him to do and good people to live with; I just have to stay on top of each step. I have to keep networking, keep lists of what I did and still have to do. I have to remain strong, and not get tired. But I’ve been his mom for 19 years so I know how to do that!

The trick is not to do so much for him when he’s here! That way I can see what he really can do, the way they do it in The House. I am such a (S)mother.

I have really been finding that it is a good idea to look at your kid in terms of what he can do. Then you can see just how far he has come. After I made this list about Nat’s morning, I felt so good, just seeing it in black and white, his level of independence:

Got completely dressed and came downstairs
Walked around the kitchen
Stood by the fridge until I prompted him to get breakfast
Made breakfast completely independently: toasted bagel and butter (I cut the bagel; usually they are pre-cut); smiled a lot
Cleaned up plate when finished
Prompted to wait for meds
Prompted to go brush teeth
Looked at camp pictures with me and answered questions about who, what, and where. Smiled a lot.
Ran a mile around the Reservoir with me, passing by a dog without any incident
Went walking and on the T with Ned, downtown Boston, to apply for Section 8 Housing Voucher
Walked around kitchen indicating lunchtime; took out the tuna when I said, “What do you want for lunch, Nat?”
Got the mayo when I said, “What do you need for tuna?”
Opened the can of tuna.
I drained it — shouldn’t have; he could definitely do that.
He added the mayo
Cleaned up when finished
Went to the market with me to buy ingredients for choc ice cream w choc chip cookie dough in it
Nat went and found the eggs and brought them to me in the market
Back home, Nat separated eggs, (yokes from whites) with some hand support
Now waiting patiently for ice cream custard to cool (takes one hour, then you have to churn it for half an hour, add the cookie dough bits, then chill the junk for three more hours).

What have I learned? It is SO easy to just do things for him, but if I force myself to hang back, he can do just about anything. I guess we are training each other for his adulthood.

We were supposed to go to the Cape last night for one more brief stay, returning Monday. By midmorning even I, a weather-report-ignorer, had heard enough gloomy weather predictions about Tropical Storm Danny coming in by tonight to make me call the whole thing off. Unfortunately, Nat was expecting to go to his favorite place on earth, and also, was waiting for me to pick him up at The House. The plan was to then continue down to the Cape, all together.

I went alone to get Nat at his house and did not tell him anything yet. I waited for him to finish dinner — even though I was there, we couldn’t just go home; he had to eat dinner because the plan had been to go “after dinner.” Charlotte had set out the plates, filled with food, and Nat just sat down and started. Donnie asked me if that was okay, and I shrugged. Let him eat. So I waited. I sank into the couch in the living room and watched while Donnie and the other guys brought in groceries. E kept grinning at me; he always seems happy. At one point I got out my cell to say something to Ned and when I said, “hello,” into the phone, E looked up and said, “Hello!” All the guys noticed I was there, hanging around, but they’ve all seen me so much that it didn’t really matter. I saw one of the guys — K — bring one small thing in and then sit in the corner, flapping quietly. It didn’t take long for Donnie to notice, too. “Hey!” he said, smiling. “Get out there and help!” K stood up and I saw he was smirking. I sighed, content for a minute. The House is really a good place and it was nice to be there, among Donnie all those bustling, smiling young men.

I did not tell Nat anything as we drove home together, pretty quiet. Soon after Ned got home, he and I conferred and made the final decision that we would not go this weekend, but that we would go next. No matter what. Even Max had informed me that he had to go one more time, to say goodbye to the Cape. Ben seemed okay, lost as he was in the game he was playing. “Boys, come in here,” I summoned them all to the livingroom and told them. The disappointment of an aborted vacation pressed in on us all like the darkening evening sky.

Nat was next to me on the couch, looking like a lightning bolt in his bright orange shirt and long sharp limbs. His eyes went round as he heard that we weren’t going. He said, “yes,” quietly, but when I said something about how I hate the rain he started to say that as well: “Hate the rain, hate the rain,” I looked at Ned, silently asking him if he thought Nat was going to be okay. Ned nodded. Nat’s shimmering, sheathed energy warmed the air around him. I said, “I know you must be disappointed, Sweetheart. But we will go in a few days. We’ll go next week.”

“Okay,” he said. Then: “Disappointed…”

I looked at him. His eyes were reddish and moist. I wanted to hug him but it would be like hugging Max: heavy, bony, rough-faced, and reluctant. Anyway soon he stood up and started walking around, gently whispering and moving his right hand, his puppet stim. Max had his phone at the ready to make new plans for the weekend. Ben was hopping off the armchair, to get back to his game. “Pancakes for dinner,” Ned said, meaning that I didn’t have to cook.