Susan Senator

I am putting up an excerpt from The Autism Mom’s Survival Guide today (Tuesday) rather than Friday. Fridays I tend to want to post about Nat. This piece is from Chapter Two, Surviving the Great Autism Therapy Chase. Remember, the focus of the book is not on the parenting of autistic children, but rather, finding happiness as a parent of an autistic child. Happiness, big and small, given the context of autism in the family. The solutions I have found range from large and philosophical, to focused and pragmatic. No solutions in today’s excerpt, however; you’ll have to wait for the book! 🙂 Pictured here is Nat (with me) last June, going to his prom.

…Families need help determining whether their children actually improved due to whatever therapies they’re using, or if they were simply misdiagnosed as “lower functioning” at the first office visit…

… If these children are all autistic, why do their outcomes vary so much? Why do some children seem to benefit from certain therapies while others do not? It is this confusion that gives autism a particularly soul-consuming quality for parents. Unlike most other medical diagnoses, there’s little precision or clarity—about what the disorder is, what the prognosis is, or about how best to treat it.

Raquel from Arizona was spitting mad when I first talked to her about her child’s autism. The ambiguity of the spectrum left her filled with a sense of frustration and impotence. She felt she was being led nowhere by doctors, autism books, and the autism community at large. “With most other special needs, you know more,” Raquel said, and as the mother of both a child with cerebral palsy and one with autism, she should know. “With my older son, who has CP, we looked into a couple of alternative therapies. But we understood that no matter what, he’s still going to have CP. We weren’t going to be able to cure him.” In the case of autism, however, many parents and professionals feel that one therapy or another can not only improve a child’s functioning but can actually cure them.

Raquel, like many autism parents, believes that autism is a unique childhood disorder in that so many children are diagnosed but so little is known about best practice, treatment, and prognosis. “What we’re calling autism is probably a bunch of different things,” Raquel says. Although not everyone I talked to would agree with Raquel on this assertion, most parents would agree that the spectrum is huge
and varied and that that in itself can be an obstacle to our peace of mind.

Here is my latest Tab column about how Papa Gino’s is coming to my tony little town, and I, for one, am glad — Papa Gino’s gave Nat a job. And a promotion.

I hear the ones who get residential as adults are not — she shook her head.
But you have to have a plan for when — they don’t say ‘dead.’
You have to go and visit a lot of places
We should just start a house, all of us — scared scarred faces
What is he going to do? He’s almost 21
I see what he loves, what he thinks is fun
But it was never something you could wrap up in a box
More often it was the box
You entered this place, beautiful and whole
But we had to force you, perfectly square peg, into the world’s dirty round hole
In the name of helping you
We had to change you
Educate you, medicate you
(I wish Bob Dylan would make a song
And tell us all where we went wrong)
Cause all I really want to do
Is just be a mom to you

Watching LOST became a bonding experience for the family. Max has been obsessed with it for a few years, and so has my sister, so finally I decided to give it a try. I may not have been hooked if it hadn’t been for the enthusiasm of Max and Ben. But soon, I, too, was part of the whole Oceanic 815 experience, where I was trying to remember who was whom and what did that mean. The best thing about the whole LOST thing has been the way we have been talking about it at dinner, offering theories and even drawing a timeline to connect all the events and characters.

Today, LOST Season 6, The Final Season, premieres, and we will be glued to the TV, the only interruption allowed being Nat’s phone call from The House.

I baked a LOST cake to surprise Max. Now I’ll have to figure out a way to save a huge piece for Nat.for Friday.

This week’s Haiku prompt is “uncanny”

Dark eyes see too much
Your mind gnaws, your heart breaks soft.
You repeat my self

“I highly recommend having children one day,” I said to Max and Ben this morning as they chatted behind cereal boxes and open laptops. They did not look up at me but they did pause to listen. Nat was hovering in loose gray sweats and rumpled hair, waiting for me to make his bagel. He can do it all himself but I like to do it when he’s home. Cinnamon and coffee smells laced the air.

I leaned on the cold granite counter and cut into the bagel. “No matter what kind of pain they may bring — “

“The pain isn’t going to affect us because we’re men,” interrupted Ben, grinning and hoisting a chunkily buttered piece of toast. The green sweet tendrils of “Nothing’s gonna change my world…” were blooming from Max’s computer.

“I don’t mean that kind of pain,” I explained patiently. Nothing’s gonna change my mood… “I mean emotional pain. With children, there is so much of that, it’s true. But the thing is, no matter how much pain there is, there is a level of joy like nothing else you could ever experience. Believe me. Just looking over at the two of you at the table like that, talking together, makes me want to cry.” I paused, realizing my eyes were puffy and wet. “Hey, I am crying!”

Max laughed. There goes Mom again, I guess they were thinking. They went back to their conversation about the animation they were working on and I went into the kitchen to check the bagel.

Well, yeah. But it’s true. You know what I mean.

Every Friday I hope to post an excerpt from my forthcoming book, The Autism Mom’s Survival Guide: Creating a Balanced and Happy Life While Raising a Child With Autism. This will be the first of nine excerpts, which will end the week the book comes out (March 3oth). Enjoy!

A happy life consists not in the absence, but
in the mastery of hardships.
—Helen Keller, “The Simplest Way to Be Happy”

W h e n m y s o n Nat was diagnosed with autism at the age of
three, I had no idea how much autism was going to force me
to change: how I parented, how I made plans, who I hung out
with, how I felt about family, how I felt about my life. Those
changes were huge and fraught with emotion and intensity.
We didn’t know what to tackle first—finding him a school
program, educating ourselves, finding specialists for him and
for us—but we realized fairly quickly that we had to do all of
these at once.

“How can I bear it?” I wrote in my journal a few months
after diagnosis. “Nat is being called a ‘special ed’ kid, the very
thing I dreaded. If I let everyone else decide that is what he is,
I feel like I’m giving up on him. I see myself as his last hope.”

Back then I thought that if I accepted his diagnosis, it would
make Nat’s condition worse. I feared that it would change
how we all saw him and treated him, in a way that would be
harmful to him. This may have been magical thinking, but it
is what I felt at the time.

I eventually realized that I had to let go of the old idea
of him, of the prediagnosis innocence, and the visions I had
of him that never really matched who he was…

…How do we get to the blessed point where we finally step
back and understand deeply that our children are whole, not
broken? And that our own lives, by extension, are also whole
and full of potential? In talking to parents, I learned that
achieving this knowledge has nothing to do with our age, our
child’s age, or the severity of our child’s problems; nor does
it have to do with income, race, or any other factors we usually
think of.

Connecting synapse
Bursts of quiet and knowing
It comes but it goes

I got the call I hate to get today in the afternoon: Nat had had an outburst with aggression. He had bitten himself (in the arm) and had scratched and pinched the teacher he’d been working with. Terese, the head teacher (whom I love), naturally had an explanation for this. I didn’t even need one, because I could see this coming, what with the weather and the past two weekends, with Nat commenting on lights left on outside and bags that needed to be zipped up.

Terese said that Nat had been saying over and over, “No schedule, no schedule.” Still, the teacher he was with knew that she had to set up his schedule so that he could begin his school work.
“No schedule, no schedule.” As she got the items she needed off the shelf, Nat screamed, bit his arm, and went for her. Terese told me that he calmed down quickly and went on to have a great day, including going to his job.

Later, when the House called, I heard that Nat really loved basketball practice and was happy all evening. When he got on the phone, he sounded tired and hoarse. I asked him, “What happened in school today?”
He said, “You bit yourself.”
I said, “Oh, Natty! You didn’t want to set up the schedule, right?”
“Right.”
“Oh, Darling. You must have hurt yourself. Don’t bite yourself.”
“Yes.”
“Nat,” I said, my throat full of tears and love for this guy who just tries so hard to get it right. “You’re a good boy. I love you.” I didn’t know what else to say. He pinched and bit, but he really is a good boy, living in a very hard world.

Senator, Susan. The Autism Mom’s Survival Guide (for Dads, too!): Creating a Balanced and Happy Life While Raising a Child with Autism. Trumpeter/Shambhala, dist. by Random House. Mar. 2010. c.208p. ISBN 978-1-59030-753-3. pap. $16.95. PSYCH

“When a child is diagnosed with an autism spectrum disorder (ASD), parents often lose themselves in the overwhelming task of caring for their child to the detriment of themselves, their marriage, and their other children. The parent of three boys (one of whom who has ASD), Senator knows about these pitfalls firsthand and here encourages other parents to strike a healthy balance in their lives. She addresses topics such as feelings of despair and hopelessness when dealing with ASD, nurturing and sustaining one’s marriage, accepting the child with ASD while remaining open to new treatments, adolescence and ASD, and looking forward to the child’s adulthood. VERDICT Senator’s message of a balanced life is valid and empowering at any point in a family’s journey with ASD. A great read.“—Lisa M. Jordan, Johnson Cty. Lib., KS

yay! 🙂

Listen with your heart, you will understand.
–Grandmother Willow

Just now I was playing the marble game with Nat. He was getting into it; I could tell because of all of the self-talk — both of us: I was babbling stuff like, “Oh, cool!” and “Oops, that’s the wrong way to match it up.” And Nat was doing his thing, words all stretched out or truncated, disguised so that he can be left alone.
At one point I invited Ned in to see our tower, and Nat demonstrated how all the marbles just go in, down, around, down, down. Always. Ned then pointed out to me a tower of books he’s going to resell to the Brookline Booksmith, our beloved indie bookstore, and Nat looked up and said, “Go to bookstore.”
Right away we both responded, “Okay, Nat. We can walk to the bookstore tomorrow after lunch.”
Nat said, “Walkabookstore tomorrowafterlunch, yes.“
Okay, so that was a plan.
Ned left to go play with Ben, who is working on drawing cartoon frames to make an animated film. I went back to building with Nat, trying to get in a little bit of science (“blah blah blah gravity”) — you can’t blame a mom for trying! But Nat kept on just self-talking and putting in the marbles.
I heard him saying, “Taaaaaaaaaaaae waaaaaaaaaaaw boohstore. Taaaaaaaaae train. Waaaaaaaaaaw traiaiaaiaiaiaiaiaia”
“Whoa!” I said, “You said, “take a walk to the bookstore. Take a train.”
Nat looked down, saying, “Noooo.” He was very uncomfortable.
But I persisted. “Nat! You don’t like when I know what you’re saying. But I want to know. I want to know what you’re thinking.” I said this very slowly and let it sit there.

Then Nat said, perfectly and clearly: “I want to go to the bookstore after lunch tomorrow.”

My new dance teacher is also my old dance teacher; I took classes with her a few years ago and it was terrifying, because she is very exacting. Now I look forward to it with a nervous excitement. Nervous, because I know I am going to be tested and pushed. Excited because I know that this way I will learn and improve. I have come to love the teachers who drill this way, however, because every single part of your move must be accurate. There are so many variations of the moves: hip walk, hip side-step, hip lift, hip click, hip bump, hip drop, hip circle… the more your body understands the differences between these moves, the more subtle and rich is your dance.

Dance teachers talk about something called “muscle memory,” which is about understanding a move within your body. The way I learn, I first must see it in my mind, and then translate it to a move. But I find — and I’ve said this before — that sometimes I have actually learned the move first, before even knowing that I’ve done it. Usually when that is the case, however, my form is not that pretty. With muscle memory, first your body understands how to execute the move, and later, with technique, drilling, and breaking it down, your body simply does it, as one fluid move.

Nat-urally I find myself wondering how learning works for Nat, if it is the same for him. Some tasks, such as with making the pizza boxes at work, or learning some other rote routine, Nat’s school has relied on breaking it down and drilling, or breaking the task down and rewarding each part that Nat has learned. This is called Discrete Trial Training. DTT is a keystone of Applied Behavioral Analysis, a very popular educational strategy used for autistic students. DTT relies on starting with the smallest steps and building into a whole, to the point where someone can then generalize and smoothly integrate the task into other actions. DTT and ABA are popular largely for two reasons: it is a good way to teach step-by-step tasks; and it is a way of teaching that allows for accurate data-taking. The latter has given ABA a predominance in autism education because ABA practitioners can claim that they are the only method based on scientific method. But the thing is, the approach can only go so far.

In terms of learning the more sweeping, organic, intuitive skills, DTT falls very short. DTT can teach a child how to speak, in a very rudimentary way. and perhaps how to attend to a speaker, and how to comment (Nat has all of these skills), but DTT cannot impart the desire to speak, the fluidity and the spontaneity of conversation. The tiny leaps from: “the dog is barking,” to “I want a dog,” is actually an entire lifespan of a leap for Nat. Even “the dog is barking,” to “barking is loud,” implies the desire to say more about something, to express.

Some things — many of them large and wondrous — Nat has learned sort of in bursts and sweeps. When he learned to read, it was letters letters letters. Trace letters in the sand. Write letters. Hear letters. See them on the computer. See them with the word they mean. Read, dammit!! For years. But finally, when he was 8, and playing with Spell-A-Puzzle, a few days later he saw a whale on the wall of a restaurant, and shouted, “W-H-A-L-E spells ‘WHALE!'” And after that he could read. Or how about the time we drilled him for two years the exact steps and rewards for pooping in the potty; we even moved the damned potty under his bedroom window, which was his favorite spot to stand and poop in his pants. Nothing worked. Nothing, until the day we arrived at our Disneyland hotel and I showed him the bathroom and said, “Here is where you will make your bm, and when you do, you will get this Cadbury chocolate creme egg.” I showed him the toilet, and showed him the egg. Next thing I know, he went in and pooped in the toilet. Came out, got his egg. Never went back to the poop-window.

Why? Why did the toilet neuron fire at that moment? Was it all the drilling, and suddenly the connection after two long years? Or was it that he was ready to fly, so to speak?

Today my dance teacher emphasized all of the ways that you listen to the music and then you do what the music tells you. She pointed to her diagrams, the hip steps we had drilled in the first hour, and said something like this: “You can use any of these steps, forward and back, eight and eight, when the music sounds like this: “da-da-da…” [fill in strong Arabic melody that would make you want to clap and stomp and sile] The steps were in my mind, and pounding in my body, so I was good to go.

Then she said (paraphrasing): “But. You have to convey joy. That is what the audience has come to see.” No one can teach you joy. Just as no one can make you want to talk.

So all of the steps are there, in Nat’s brain. The moves are there in his muscle memory. He feels joy. Now I want him to just dance.

Nat’s teacher sounded so bubbly yesterday on the phone, the Friday check-in. “It’s been such a great week, everyone’s been so happy,” she said. “Probably because it’s a short week and a long weekend!”
I was happy for her because God knows she can use any time off she can get. “So Nat had a good week?” I prompted. “How is work?”
“Well, he earned his soda, so he’s definitely doing well with the job coach being faded back.”
I, of course, was happy to hear this. I began thinking about how quickly Nat learns things; just a month ago or so they had started having the job coach hidden from Nat’s view. His productivity plummeted, without the usual person sitting there as the glue to keep him sticking to his job. But within a few weeks, Nat had figured it out that he was supposed to continue to work anyway, whether or not someone was standing over him (or next to him).

I asked if I could talk to the job coach directly, to get more info about Nat and work. One of my dreams is to work things out so that Nat would always have job support, no matter what. He is so good at working, so quick, so loyal to his job, that he should always be able to work. I have begun to think about ways to generate income that would pay for a job coach for Nat when he is older. Nat’s teacher told me that sometimes people share a job coach, as long as they don’t need someone to stand over them. To have Nat share a job coach with someone else, or even only to have someone at work who checks in on him — that would be a piece of Adult Heaven for me, in terms of Nat. Imagine if he could simply arrive at work and go immediately to his task. Work for a couple of hours, have a snack break, and work a few more. Every day. That would be five hours of something worthwhile for him to do, five hours when someone else did not have to arrange activities for him, when he wasn’t simply walking a circuit around and around. Because after those five hours, there are still so many and I want that golden soul to be filled up with a sense of purpose and satisfaction.

Nat’s teacher said, “I’ll have him email you, but I also know a little about how this works, because some of my students have gone on to have jobs after they leave.” Then her voice cracked and she said, “Oh my God, I can’t believe we’re talking about Nat graduating, though…” I wished one could give a hug through the phone. Then she went on, telling me how sometimes her students can continue working, because the school has ties to larger corporate chains with many franchises. “The job they have while they’re in school stays with the school, unfortunately. But what they do is get the manager at the TJMaxx or the Rite-Aid, or in Nat’s case, Papa Gino’s, to write a letter of recommendation to a different Papa Gino’s near his adult home. “It amounts to a job transfer, rather than hiring someone totally new,” she said, matter-of-factly.

And there it was again, that big puff of something inside my heart, my throat, rising up so that I wanted to shout, all because of this completely banal explanation of how, exactly, my very autistic son would have a job. Nat’s teacher had given me the gift that all autism parents search for, when they are ready: a piece of the future. For now I could imagine just how it would work, how a few people at his school and at that little pizza store in that little town, would look at Nat’s productivity, his needs, his disposition, his letter of recommendation. And just like that, he could be an employed adult.

I had an oped published in The Tab, regarding the Senate’s version of the healthcare bill, in which a substantial portion of funds will be recommended for curing autism. I believe in public healthcare, certainly. I also think that if the horribly challenging co-morbid problems that often occur with autism (aggressive behaviors, for one) could be cured, many would be better off. But, I don’t believe that there is enough public attention span, energy or money for there to be this particular emphasis, rather than for job supports, independent living services, autism education, or autism family support. It’s a very deep issue that affects everyone, and really, we as a society only stand to benefit from it. There are other countries out there with free health care already! Living and breathing proof that as a system if implemented correctly improves the quality of life of its citizens greatly, among many other direct and indirect benefits as well. You can find more information here, if you’d like to read up on the specifics. I find it so sad, whenever the topic comes up there’s always pushback.

I admire Nat for his ability to stick with his jobs, to find what is good in them and to keep going. I don’t know if he feels like he has no choice, though. I don’t know if he knows the concept of choice. Sure, you can ask him to choose between ice cream and oreos, and he will, (or he’ll cleverly say, “Yes.”) But to know that he can protest or question working? The thing is, when you let yourself believe that someone may not understand much, you can drive yourself crazy wondering what he does know.

Why can’t I just decide what I think Nat knows and just leave it at that? For that matter, why can’t I decide something and just leave it at that, without looking back and revisiting?

When I give my “Making Peace With Autism: Family Life, Autism, and the Pursuit of Happiness” talks, I discuss my family’s arc of coming to terms with autism: how we went through wondering and worrying about what was going on with Nat; how we then learned and grieved and learned some more (the learning curve, or really, the learning mountain); and then, how we accepted and connected. Recently I have added the concept of letting go of the child and coming to terms with the adult he is becoming.

But am I truly coming to terms with Nat’s adulthood? If I’m continually questioning what he knows or doesn’t know, if I’m continually squeezing myself into his brain and seeing the world as he might, am I still too wrapped up in him?

I did let him go to some degree when I moved him to the residences at his school. It really seemed like an opportunity for him, to learn that other people could help him and that his Home wasn’t the only place he could live. But I have worried so much about what he makes of this change. The way I think of Nat, almost anything goes! I torture myself by never allowing an end to a phase.

I wonder if other people just come to a milestone and they don’t keep tripping over it. I wonder if discussing the arc of a family’s autism understanding is relevant to others. The way I handle that is I tell my audience that they should take home what is relevant and throw away the rest. I have no agenda to convince you to view autism or family life the way I do. I’m just telling you about my experience and what I’ve learned.

Maybe the work experience is different for Nat than it is for me. In the end, the only job I’ve ever felt truly comfortable with is writing — which I’ve been doing for 25 years (if anyone wants to publish any of my novels, let me know!). I’ll write anything for anyone. I’m a writing slut.

How about Nat? Is he a pizza-box slut? He is the unstoppable box-maker. He has risen to his old high levels of production; this past week he was back to earning his soda (he also gets a paycheck but the soda is more relevant to him). So even though they have really faded back the job coach, he is now able to work as he used to. One day — OMG — he may not even need a job coach. Kinahura.

So he must get it. He must like it. Or wouldn’t he be having fits?

It is so hard to realize that this is who Nat is now: a mensch who is game for just about any new experience, whether it’s living somewhere else, or work, or games, or friends. Little Nat was so different, so timid about everything. So uninterested in new things, toys, people, places. I never imagined he’d be living in basically a dorm, and working four jobs. Maybe Nat has learned a kind of confidence because he’s had so much success as a teen and a young man. I hope so. And one day, maybe I’ll know so.

Somehow this reminded me of Ben and Nat. I think my Ben’s sense of justice bubbles hottest when it comes to cruelty and being misunderstood. I sense that there is a gossamer-thin sheet that separates his rage at Nat from his anguish about Nat. For now, I’m grateful for that frail boundary, because Ben needs all of his resources about him as he bushwacks his way through sixth grade. But the day is quickly coming when my small fierce youngest kitten will be a lion, ready to do battle for his brother and more importantly, ready to befriend him.

One of the reasons I write this blog is that it gives me a medium for working crap out. Another reason is that I want people — particularly autism parents — to understand that autism is not the only challenging thing someone can face in this life. But rather than saying, “Hey, autism is not so bad,” I’m saying sardonically or with a kind of wisely ironic cynical sneer, “Hah, there’s so many things that are bad, why just pick on autism?”

Sorry. A bad day for me. Stop reading right now.

While many people are so glad to see their kids back in school, I am a bizarre weirdo who misses them when they go back. I like having them to fuss over, talk to, cook for (except dinner. I hate making dinner as much as I hate going to the dermatologist. But more about that later.).

I think a good New Year’s Res for anyone is to do the things that make you feel good, and to keep away from people who make you feel bad, even if it’s a doctor. Let’s say a dermatologist. But for some of us to stay away from those who make us feel bad, that would mean staying away from the entire world. Other people more wise than me would advise me to focus on something outside of myself and see what’s good rather than notice what’s bad. I found myself telling Ben to do just that a few minutes ago, but even then I was sure to also tell him that I’m still working on that, at age 47.

Being 47 has been a weird ride. Mostly I’m understanding the beginnings of growing old, and feeling kind of good about it, like, cool, I’m wiser than those 20-year-olds. Or like the 11-year-olds in Ben’s class. But not today. I went to my dermatologist today; that makes twice in two months, for nothing. She’s mostly about “improving” everyone who crosses her doorway, rather than someone you feel scared to see. It made me feel so grossed out about myself to see all those skin flaws so close. From her point of view. I could see the skin not popping right back into place. I could see the spots on my cheeks. I know, I know! A sun worshipper my whole life. She doesn’t have to point them out and tell me she’s got something for this, and I can choose from Door A which is not so expensive as Door B, but is far less effective. “Of course if you’re satisfied with the L’Oreal, then just stay with that.” Jeez. What if I actually never noticed that stuff before and was quite happy with my sagging chin lines?

I know, I know, I have to Eleanor Roosevelt myself, and not let anyone make me feel bad without my permission. Anyway, it is so easy to hate yourself if you’re a woman, and if you’re a mother. And if you’re an aging female mother — well, watch out. And we don’t make it any easier on each other.

So my New Year’s Res is to not be part of the problem and never again give a stranger a makeover in my head or to try to suggest a new way for my sister to dress or laugh at Mom’s sensible shoes or scoff at people who think they have all the autism answers. What do I know? I just ate ten oreos.

My usual place for revelations is as I’m falling asleep. A light goes on — and I don’t mean Ned‘s little book light, even though that definitely goes on every night. Last night I was talking to Ned about how I wished I’d played marbles with Nat yesterday, how great it was that he’d wanted to play both Thursday and Friday. And then Wednesday afternoon, we had done a puzzle together, come to think of it! But instead, yesterday, on Saturday, I was gone for a long time seeing a friend I hadn’t seen for weeks. I thought suddenly how Nat rarely asks for things, even things he desperately wants, like food. If he wanders into the kitchen at noon, and I look at him, he speeds away. If I say, “Nat is there something you want?” He replies, “No something you want!”

But he really does want to eat. As soon as I offer a concrete food choice, or simply take the food out, he’s back, wanting and waiting. It’s just that there is some kind of disconnect, some kind of block to his asking for what he wants/needs. I don’t know if it’s physiological, psychological, neurological, or illogical. It just happens, or actually, it doesn’t happen. He does not ask.

I was drifting off, teary-eyed about how poignant it was to see him gently and deftly picking up the tiny ball bearings and placing them onto the delicate black ramps. I remembered how I’d just gotten the box out excitedly and cried, “Nat! Let’s play with these! It’s a different marble game.” And how he’d come right over: “Yes.” Finding something he wants to do with me is always a real high for me.

But it had been the same for the puzzle. It wasn’t just the marble kind of toys. It was any toy.

“Oh my God,” I said to Ned, as he welcomed me over to his shoulder. “What if it’s that Nat really wants to play and do stuff with people, and he just can’t ask for it somehow?”
Ned thought for a moment and then said, “He probably does.”
I went on, “Maybe that’s why he seems glad to go back to The House. Because they have so many things going on, so many people who try to get him to do things.” It never occurred to me to understand why he was happy to go back every Sunday; all I ever thought about was the fact that he seemed okay going back.
Ned said, “I think he really likes it there. I think he really likes doing things with people.”
Now the tears were coming. “So we should be asking him to do stuff with us all the time, like the marbles. See how he jumps up to go on walks with you? Or to shovel snow?”
Ned replied, “I think he gets bored here.”

That is the truth. Or maybe it’s the truth. But what I know is he walks and walks and talks and talks around our house all day and people say so little to him. We all have become so used to the fact that he doesn’t interact with us.

But — just the way he wants to eat but doesn’t tell us, it is very likely that he wants to interact/play/do something outside but doesn’t say so. He can’t. So it is up to all of us to offer it to him, the way we would with food. Otherwise he might be very lonely here, very bored. I can’t bear that thought. Even though he’s used to it, even though he’s found ways to be content (walking and self-talking, lying on the couch, lying on my bed). It’s not good enough!!!!!!!!!!!

I felt myself plummeting into despair, realizing what I had not been doing, feeling sad for Nat who gets stuck by forces unseen. But then Ned said, “You can always start tomorrow.”
I laughed in relief, soothed by his common sense. He is right. You can just start doing better tomorrow. And I went to sleep, while he reached for his little book light and read.

So I realized — just yesterday, in fact — that I get a little afraid of Nat. There’s a kind of super-polite distance that has been created from his living elsewhere during the week. But it may go back further than that, because it is a familiar feeling. It’s a brittle apart-ness that develops between us when I am not truly connected to him. It happens in two different circumstances: when he has recently been aggressive with one of us; and when I’m not used to his being around.

The memory of any sort of aggression fades but does not die. It traumatizes; it sinks beneath the bruised skin and becomes a faint scar long after the wounds have healed. This must be an evolutionary-based development, meant to protect us from further harm by causing us to learn from these situations.

I also have to remember that Nat is not the only aggressor, though his hurt the most, physically. There are lots of forms of how parents learn to “Get back! Leave me alone!”

But still, when it’s your own child hurting you, it is very disturbing. As Nat’s mother, I come from a place of the deepest connection, when he first grew inside me, a tiny lima bean spinning and gathering and dividing. I held him, I protected him.

As kids grow up, however, their job is to split from us in every way possible, and stand on their own. But this can be a very bloody process, as messy as birth. The trick to having a relationship nonetheless is to maintain a fluid and flexible connection even so. So there’s a kind of natural backing-off I have had to learn — with both Nat and Max, and now even Ben a little bit — to let them grow and do their thing, but also a weighing-in, a putting-my-foot-down, a re-gathering, that I must also do regularly with them.

Reconnecting after fights is tough; reconnecting after absence may be even harder. I now have an inkling of what next year will feel like, when Max comes back from college, a big man with dirty laundry and secrets. That’s why these long family vacations are so necessary.

But they are so intense. When Nat first came back, at times I had this sinking feeling of, “How long is he going to be here?! How am I going to get through this?” Especially when, on one morning, he was extremely anxious (remember when I almost made myself eggs just to please him?).

So there’s this thing I learned, long ago, I don’t know when, maybe when he was 11, maybe younger, maybe older. Instead of running from it, I have to fall into that long span of time and space that opens up. Instead of dreading contact, I must dive into it. I dig down inside and reconnect with my own true priorities: loved ones, including myself, feeling the time we are in together, enjoying it somehow.

Nat always knows when I have come back to him. He can sense genuine from false very keenly. So when I said the other day, “Nat, you want to play something with me?” I said it with my heart and with hope that he really would want to play. And he did. We settled on that marble run game, where you take all these bright plastic ramps and platforms and you construct large Rube-Goldberg-like structures and then roll the marbles down and see what happens.

We had not gotten this game out for years, and the dust attested to that. (There is no real way to get my house clean, I accept that. It has a clean appearance, and the clothes, sheets and towels are truly clean, but the rest of it — don’t look too closely. ) (Here is an old picture of Ben with the game, you can see what I mean about the clutter issue.) We settled into it quickly, because it was fun. I had to relearn how to hook the things up so that the marble would roll somewhere and not just plunk out immediately to the floor.

I didn’t know if Nat understood the physics involved; he seemed interested in the marble aspect. I’m sure that the throaty clinking of those curved glass balls pleased him as much as me. I built and he rolled for a long time. There was no sense of how it would end, unlike Candyland or Connect Four. You would think, with your Autistic Assumptions, that Nat would prefer a game with a finite end, but there you would be wrong. He was so content just to sit there in that sunny spot and watch me build, and wait for his chance to try it out with a handful of marbles. Click, click, clatter.

The next day I found a new, similar game. It was an adult version of the marble thing; a desktop toy with tiny ramps and tiny ball bearings instead of marbles. Nat was game, so we played with it. His fingers had terrific dexterity as he plucked a tiny silver ball from its magnet home and rolled it with care down my fragile structure. He did not mind when they collapsed. He figured out how to get the ball to roll when it got stuck, due to our uneven floors.

The playing ended when it ended. We both got tired of it eventually. He helped me clean up and he went on his merry way. But I have found that I am now more casual with him today, more assertive. I am not afraid, because we’re friends again.

The New Year is here, and with it comes the Old Fear. I keep buzzing around the issues of adult services, or perhaps these are buzzing me, tiny specks needling into my eyes and ears like gnats. But it is Nats, really; Nat’s future.

When Nat was younger, plunged deeply into the center of his school days, all I could think about — in activist terms — was that the career of the private special needs school teacher needed to be improved. Let me clarify that I am not talking about regular private schools that families pay big bucks to send their kids to. I am talking, instead, about the state-accredited private special needs schools that public school systems pay to send their complicated special needs kids to.

These state-accredited private SPED schools (which Nat has attended most of his school life) are also known in Massachusetts as “Chapter 766 Schools,” because they grew from the beloved Chapter 766, the legislation that called for every single special needs child to be given a free and appropriate public education. Chapter 766 opened the doors of the public schools to kids like Nat. And yet, Nat only attended school in our town for one year of his life; when he was six.

What I learned in all of Nat’s school years is that the public school special education (SPED) teachers had the same training as the private school SPED teachers, but earned sometimes a third more salary. I may have that figure somewhat wrong, but what I was told by the teachers themselves at the private schools is that they were always being made offers they could not refuse. The public schools would siphon them off, freshly trained in the private SPED school trenches, causing frequent turnover in staff of the private SPED schools.

The turnover in the SPED schools created an unstable situation for students like Nat, who were most likely in those private schools because the public schools could not/would not accommodate their needs (classes were too large, approach was not appropriate, etc.). So here you’d have a guy like Nat, who needs situations and people to be ultra reliable, but instead, he was getting all this upheaval.

I remember going into a board meeting at Nat’s school, comprised of parents, teachers, and administrators, and suggesting that either the teachers unionize for better pay, or that we all start a campaign to legislate higher pay for the private SPED schools. (The state legislature sets the pay rates for the private SPED school teachers.) I was met with confused and/or shocked faces. I realize now that union is a four-letter word to many, and so I’ve moved on with different ideas of how to improve things in the private SPED school. I joined organizations that lobby for such things. I pestered my own state rep and state senator for better pay for private SPED schoolteachers. And I donated annually to Nat’s school. Private giving, sure, but I try not to be too dogmatic ideologically when it comes to Nat. Whatever helps.

In the last few years the turnover rate has eased in Nat’s school. I am not sure why or how, but they may have had an infusion of new funds recently. They also built a huge new facility a few years ago. The vocational preparation is fantastic, too. I have begun to look at the future now, to the time when he is no longer under the aegis of public education. I don’t love what I see.

I see rapid turnover of residential staff in adult homes. I see low training levels of these staff. Low-to-none. Poor pay. Poor oversight. And I realize that as troubled and imperfect the conditions were for private SPED schoolteachers, things are far worse for adult service providers.

I have been told that when Nat is an adult, I can no longer expect any sort of skill-building for him such as we get in his IEP. Now, when he is not at his job (should he still have one) or in his DayHab, the emphasis will be on “leisure.” We all know what that means. Sitting around doing whatever he feels like doing. Utilizing his skills to the extent that he has learned them while still in the IEP years.

Nothing strikes fear in the heart of a special needs parent as the ticking of the clock. Our kids’ development is like a time bomb, where we feel nothing but dead lines and the mile stones that hang around our necks. Catch up! Lost year! Lost time! Brief window! This is our Greek chorus.

But instead of wringing my hands like Medea, I’m going to figure out how to improve the situation of the Post-22 developmentally disabled adult. I think that the place to start is the direct care workers, the group home staff, the personal care attendants. Who is working directly with your loved one? How dedicated are they? What is their level of training?

Why does the law demand that those working with Nat are highly trained, until he turns 22, and then, suddenly, anything goes as long as the CORI checks out? Why are the pay levels and training levels so different, between public education personnel and adult group home care? Do our adult children’s needs suddenly drop off? Or are we just not fighting hard enough?

Clearly the law needs to change. Extend the standards of IDEA into adulthood. Those who work with the most vulnerable must be the most highly trained. And don’t tell me it will never happen. That’s what people thought before the ADA/IDEA/Chapter 766…

This is a civil rights issue if I’ve ever seen one.

The renewal of energy and focus is what New Years are for.