Susan Senator

Silent striped-shirt ‘scuse me-less skinny bikers on skinnier bikes

Sail past

Muscular me mashing my feet on Max’s mountain bike,

faithful friends

But knot my knees.

I hate noises.  So does Ben.  So does my dad.  Growing up there would sometimes be anxiety in the car when my dad identified a new noise and would try to pinpoint it.  Back then I couldn’t understand what the big deal was.  So what, a rattle, who cares?  So says the carefree ten-year-old playing in the backseat with her 12 year-old-sister.

I had to bring Max’s bike back to the bike store this morning because there was a noise somewhere in the tire area, when you pedal.  He and I had brought the bike in to get the brakes repaired and when we rode out, brakes worked but new noise worked better.  I took a long ride with the bike anyway, and heard that stupid sound the whole time, even through my iPod. “That happens sometimes,” my dad said, “just get the guy to adjust it.”

So this morning, the guy put the bike upside down on the platform and spun it around a lot; but he could not reproduce the noise.  So I had to accept the fact that maybe it was all okay now, mysteriously?  I hate that!

When I bought my most recent car, a lovely little 2010 silver Honda CR-V, I noticed a rattle somewhere in the driver’s side door.  It was kind of like teeth rattling.  I tried to joke about it, to be okay about it, by naming the car, “Clickety Clack,” but I was pissed off.

“Sometimes a new car has noises,” my dad said.  “Just let them adjust it.”  Well, he would know.  Sure, easy enough, but of course the first time they couldn’t reproduce the noise and the second time it was only a temporary fix.  By the time Ned brought it in again (notice that Ned did it because I was way too mad to do it), they worked it all out and now we are noise-free, knock wood.

Seriously, I surprised myself to learn just how unhinged I get by noise.

And so this got me thinking about noise, and assumptions.  One of the biggest stereotypes about autistics is that “they don’t like loud noises.”  That one is way up there with “they don’t like to be hugged,” and “they are visual learners,” and “they are all preternaturally handsome.”  All 1 in 100.  Imagine that.  So many gorgeous auties and aspies in the world.  We should start a whole new modeling industry so that we could pay off the therapies!

The assumptions we draw because of our own narrow set of experiences!  I don’t know where the extra-helping-of-beauty legend came from; maybe because we hear so much about autism being a monster that people think that autistics should look warped and twisted and thus are so are pleasantly surprised to see that they look like everyone else.  I get embarrassed for people who make that assumption because it is so pathetic; it’s as if they want desperately to believe that I’m getting something out of this autism deal.  Hah!  Little do they know, I have Natty; it is they who have the short end of the stick, for being Nat-less.

I think that what people need to consider more often is that if you get your neurological signals crossed, then you might end up looking like you dislike something when maybe actually you like it a whole lot.  It’s like laughing during a funeral.  It happens to all of us.  An overload of signals and emotions, and, voila! Inappropriate response!  Makes sense to me.  But Natty laughs when there is a lot of noise.  It looks to me like he truly enjoys the noise.  When Ben was first born, Nat would go around saying, “Noise like a baby!”

We were at a party recently and a veteran school therapist saw Nat there and said, “Oh, this noise and crowd must be very hard for him.”  Hard for Nat, to be at a party?  Nat loves parties probably more than the rest of us in this family.  He grins his head off and does joyful party stompies everywhere. He loves the food, the music, the friendly people who always seem delighted to see him (must be that preternaturally handsome face of his).

I’m the one who can’t stand certain noises and certain parties and certain stupid narrow assumptions.  My father can’t stand certain noises either.  Ben is like that as well.  No one makes assumptions about us; rather, they give us the benefit of the doubt.  But Nat?  Well, he’s autistic, so, there you go.

But Nat couldn’t care less.  To him, it’s just a lot of noise.

There was a boy his name was Nat
He couldn’t make up his mind-oh
Yes, yes, no, no, no
Yes, yes, no, no, no
Yes, yes, no, no, no
He couldn’t make up his mind, oh.
–Nat, 4 years old, song from preschool (sung to the tune of ‘Bingo’)

Yesterday we went to a barbecue with old friends. These are people who always make me laugh and always make amazing food. We were all outside for the most part, sitting in their meadow-like backyard while kids played in the pool. We’d brought Nat and Ben with us, Max having been invited to the first of many graduation parties. These days having the five of us together at one time is really an event, sigh. So much so that I find myself thinking, “Hey! Family of Five!” when it happens. (When Ben was born, I’d made up this song:

Family of Five, Family of Five,
So much trouble just to stay alive
They’re always tired
Please don’t get fired
Family of Five.)

Anyway, our friends have a dog and a cat. Every time they invite us up, I ask what the situation will be with Lindsay, the dog, because Nat is afraid of dogs.  It’s kind of a habit of mine, because the reality is that I don’t want my friends to do anything special with the dog; I want Nat to stop being afraid of her.  It’s just one of those things, one of my goals.  I see no reason for Nat’s fear of this dog.  Lindsay is friendly and not obnoxious in the constant-barking, jumping-up, crotch-sniffing way dogs have.  But Nat just fears all of them.  “NO,” he will say when a dog approaches, and he scrambles behind Ned or me, and almost tries to climb up on us to get away.  He is utterly, irrationally, phobic about dogs and cats.

And yet, there is this element of fascination he has for them. He’s not screaming running away.  He’s not teary, or upset.  It’s just this insistent, “NO, NO,” while looking at the dog.  It is not like real fear.  Yesterday I felt that it was almost like a rote response.  Or a game.

So Ned and I set about getting him over it.  Lindsay hung out at our feet for a long time, while Nat said, “NO,” quietly and continuously, all while staring at the dog in fascination.  We extended the backs of our hands to Lindsay to let her lick and sniff them, to show Nat that was okay, and nice.  Everytime we would say, “Nat, show Lindsay your hand, like this!” Lindsay would extend her head towards Nat, watching him in curiosity.

Little by little, Nat started extending his hand in Lindsay’s direction, never close enough for actual contact, and still saying, “NO.”  Lindsay would try to meet him halfway, but she knew that she should not be too forward with him.  This continued for awhile, with us saying, “Nat, really, she’s just a little friend, she likes you, it’s okay,” and all of that stuff you say about dogs, and with Nat still saying, “NO,” and yet sticking his hand out — but always too far away actually to touch Lindsay.

After awhile Nat started smiling while saying, “NO,” and we all laughed.  He never did touch the dog.  He had made up his mind,oh.

I think I was raised to be a perfectionist. This is not a criticism of my parents; it is merely a statement of fact that we Senators are supposed always to do our best, to try our hardest, to be as kind and smart and healthy as we can possibly be… All not to be better than anyone else but so that we would not be faulted for anything. I think perfectionism springs from a fear being found out as being flawed or fraud.

I also do not think we are unique in this approach. I think most people operate from the need to be on top of the heap. Maybe it’s Darwinian.

Of course I am speaking on a deep, primal, irrational level. I don’t go around feeling fear or struggling to be so very good. But I do notice sometimes, that I am making an effort to “rise above.” What I mean is, I’m often trying not to be part of the problem. What I should have said at the outset of this piece is that I was raised to make the world a better place.

Having a child with a profound disability makes this an interesting challenge. Here you are, sitting politely in a restaurant, perfect manners, smiling kindly to everyone around, mentally wishing a happy time to all… jeez, I sound like Saint Pollyanna of Eateries or something and I swear I am not. (My religion doesn’t do sainthood. Instead, we have The Supreme Jewish Mother inside us, saying, when you bring home an A: “Nu? So you couldn’t bring home an A+?”) . I know I am “diseased to please,” as they say.
So anyway, sitting there with Nat, while he does his thing: puppet hand, self-talking, difficult eye contact, few reciprocal greetings —

(You know what? I hate the way I refer to Nat as what he is not or cannot. People ask me what is Nat like and I say, “Well, he has difficulty speaking, and doesn’t really converse to well… ” It’s like I am ticking off what is not perfect about Nat, what is still unformed. When people ask me what Max is like, on the other hand, I say, “He’s a real mellow, go-with-the-flow kind of guy. Very bright, into technology, coding software, making movies, making animations. He’s going to study film and technology at NYU. He makes apps for the iPhone. He has a wonderful girlfriend…” It’s like I’m selling him, like a product! Like I think we have to reach a certain standard, always. This is what I mean by perfectionism. You don’t want anyone to think you’re slacking off. This is why I have such a problem with my free time. I feel, deep down, that having free time means I am not doing what I am supposed to be doing at the moment. There is an element of almost-panic to my productivity. People ask me how do I have the time to do this and that, and I feel embarrassed, because I do it all to avoid having nothing to do! I hate having opposite problems from others. I hate feeling different. Learning to relax and maybe just go on a bike ride is an achievement I’m proud of because it means I am actually enjoying my free time!

Sure, I know that many times I do speak of Nat in a positive way, but there is the same piece to it where I am trying to — justify his existence? Just like I justify my own: “He has four part-time jobs! He lives with five other guys in the residence at his school! He is happy doing most things and learning new things. He has a lot of friends, loves sports, especially basketball and swimming…” This is what I’m proud of in Nat, these are accomplishments the average non-autism citizen can sink his teeth into.

Again, bear in mind that I am speaking on a more subconscious level, I’m speaking almost theoretically here. This is something that occurred to me while eating in a restaurant with Nat today. At my conscious level, I was so proud of him. Tangibly, I was proud because (here come the “necessary” reasons) he ordered for himself and the waiter understood him. The waiter spoke to him, not to me, about refilling his water. I will let you absorb how momentous that is.

One thing I left out when describing how I was raised: My parents were also probably aware on some level, of the quest-for-perfection streak that runs through our family. And so they often said to me, “Give yourself a break.” I remember thinking that I did not know what that meant at all. I had no clue what giving myself a break was.

I think I know what it is now. Sitting there with Nat today, on the edge of my seat and making sure he did everything right, I was suddenly aware of an even deeper feeling: just pure joy that he was mine, that we were there together. Doing everything right because we love each other, nothing more, nothing less.

The Globe did a little Q&A piece on making peace with autism (the philosophy), featuring the Survival Guide and me!

Ned, Ben, and I started watching Lost this past winter because Max is SO into it that we wanted to see what was so good about it.  We have the whole thing on DVD (minus Season 6, of course) and became, predictably, obsessed.  And now we just cannot bear the fact that it is ending. So, of course, to honor this momentous occasion, we all baked a cake:

"Lost" Cake with Smoke Monster & Golden Cave

Lost is the best show that ever was.  It had science fiction, yet, which normally I hate, but that ended up being one of the best things about it (the time travel)!  It had religious themes, character backstories, what-if flash sideways, love, hate, excellent dialog, humor…

…and totally sexy men to watch.

Desmond. Jeez.

mmmmm Sawyer

mmmmm Sayid

My favorite hunk, Ned

When Benj was a very little guy, he used to sit on my lap at the beach, holding on tight to some little palm-sized truck or being.  He did not like to move from there.  I was his base.  He took a long time to get himself into the sand, and even longer to play in the waves the way he does now.

It worried me, of course.  All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing.  Benj could do all of it; he just had to do it from my lap.  I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self.  Sweet Baby.  But oh, God, was I worried.  He wasn’t like Nat, but he wasn’t like Max.  So what was he?

He was always content to play on my lap.  He was always content to sit in the big arm chair with kitten Beanies or drawing tiny palm-sized pirate ships over and over and over again. Sometimes he’d ask me to play with the kitten Beanies with him, but he always had such a firm idea of what the game was that it was tough to get it right.  He had such plans, so much going on in that adorable head, such an intense stare, thumb plugged into his mouth as if to help keep it all to himself.  Why did he have to keep so much to himself?  Why did he enjoy solitary play so much?  Why was I the main playmate, for so long?  Why was it always his idea that had to win?

Of course I had him evaluated.  Wouldn’t you, seeing that Nat was autistic, hearing all of the Early Intervention warnings/statistics?  I learned that he was not on the autism spectrum.  He was “normal, but stubborn.”  I was instructed to break into his solitude with other little kids and other games:  to gently insert my own ideas and steer him off his internal path.  But the psychologist also pointed out that she knew our family, so she knew the chances of my actively changing my behavior, into this play therapist mommy, would probably not be stellar.  (We are all islands in this family.  We all have our laptops open at all times, and Ben’s desktop is always on with a project of his.) Dr. W knew us very well and she smiled, saying it would all probably be okay.

That was a great thing for her to say.  He is indeed what she said, and then some.  He is not Nat, and he is not Max, and he is not easy.  No diagnosis, but life comes to him kind of hard anyway.  He’s “got”  Life-Comes-At-Him-Hard-Ism (LCAHH)

Today I was thinking about a friend whose second child was also found to be on the spectrum.  And also another friend who fears it.  I know of so many who did a sib study program somewhere because of one child on the spectrum.  And so much of the time, the sibling turns out to have a diagnosis of some sort, but much more minor.  I was thinking about Little Benj as well.

I had a thought that was kind of radical for me, and please don’t let it offend you:  what good does the diagnosis do in some of our children?  We all reply, “Well, of course you want to know.  You need the services.  You need to know what you’re dealing with.”  But do we?  Do we need to know?  Does hearing, “He has Asperger’s” give you relief, does it change how you parent him?  Really?  How?  Weren’t you already creating structured routines, rewarding good behavior, using five-minute warnings for transitions?  Or did it only make you sad and unsure of what this means?  Weren’t you already worried about some stuff, like where was he going to be in five years or ten years?  Or how would I take him to the supermarket?  Or can he have sleepovers, if he’s on the autism spectrum?  Relationships?  Did the technical certainty from a doctor bring you relief, make a positive change?

Probably not.

Okay you need the label for the services.  I’m not going there.  Nat has come so far with the services he’s gotten.  And then there’s the argument for Early Intervention, the nip-it-in-the-bud argument.  Yes, a good one.  But —

What bothers me is that the worship of EI has gotten to be so fervent that people believe it to be fundamental in Making a Difference Later On.  Pay now or really pay later. But sometimes EI didn’t make a difference later on.  And no one knows why.  Did the kid get misdiagnosed?  Did the schools fail him?  Did the parent screw up? Does it matter?  What matters is that there be supports and structures for him in Later Life so that he can live okay as an adult.  No matter what the diagnosis, if someone is struggling, they’re struggling, and they could use a little help.  You might have an Aspie who simply cannot be left alone.  You may have an adult with Down Syndrome who can live independently.  Life is full of surprises.

What bothers me is when the label confirmed what you already suspected, and made you feel worse. Made you now think your kid had a limitation that he doesn’t necessarily have.  Changed his childhood into one with services and therapies, with assessment and appointments.  If that’s what’s needed, okay.  But I am here to say, don’t let the label change how you see your child.  It’s just words.  You already knew who he was, his difficulties.  He is different, you know that already.  Okay, the therapies may help some of that.  But what you need to do the most is give your kid a childhood to the best of your ability — and his.  You have already been adjusting to the way that he plays (or doesn’t), the odd language (or lack thereof), the eccentric behavior, all the difficulties.  Okay, that’s the disability part.  You’ll do what you can, he’ll do what he can.

But you don’t know what will be.  Benj wasn’t like Nat, and he wasn’t like Max.  He is Ben!

So do you have a future, an entire life with your kid.  And a few letters cannot change that, one way or the other.  He’s got you, his base on the beach.

Having a rich imagination sometimes works well with autism — and sometimes it doesn’t.  With my ability to think, dream, and create, I have been able to imagine the way some things could be for Nat, a bit like Jack Kennedy, only I dream of things that might be and ask, “Why not?”  My imagination has helped me have breakthroughs, in that I would give myself new ways of seeing old things, and continue to hope.

My imagination can also be my worst enemy.  The way my autism upbringing began, the evaluating doctor told me a lot of “we don’t know, so you’ll have to find out what’s true for Nat.”  That was the perfect bit of (non)guidance for me in that it fueled my already profound sense of my own intuitive ability.  But you might also say that it ignited my morbidly obese imagination.

Tonight, while talking to Nat on the phone, I detected a scratchiness to his throat.  He was hoarse.  I asked him, “Nat, do you feel okay?”  And he said, “No.”  He did not respond in his usual rote way, tossing off a casual “yes” the way he does even when the truth was a dire “no.”  Tonight, he answered “no” right away.  I then asked, “What is hurting you?”  And he answered,”Your froat.”

Stunned, I asked Nat to give the phone back to R, the staff person he was working with tonight.  Nat understood that he was saying good-bye to me, and he said, “I love you,” which is what I say when we get off the phone, and what Nat says if prompted. Every now and then he says it unprompted, like this time. But I was too overheated to mark it.  I asked R to take Nat’s temp (normal) and to check on him in the morning.  Had he come down with strep, like Max had a few days ago?

I went through the rest of the night with Nat not far from my consciousness, wishing I could know for sure if he was feeling awful.  Knowing for sure is, for me, the Holy Grail.  I don’t know if I’ll ever know anything for sure, and all my life I’ve been able to drive myself crazy with that quest.  Having autism in my life has provided a never-ending list of things I will never Know For Sure. Tonight, I suddenly thought, “What if Nat is lying in bed, in pain from strep, and feeling like the night will never end, and his pain will go on and on, because he’s not home? How do I know he’s not sad and scared?”

I brought this to Ned, of course, because I was immediately filled with too much pain to bear.  Ned said, “Why would he think that?  He knows the drill by now.”  And — splash!  Out went the fire.

I realized that it is just so easy for me to work myself up, believing the worst, imagining an entire Dante-like world of horror in Nat’s mind, simply because I don’t know for sure.  And what’s more, it seems like in doing so, I miss out on the perfect little gem of reality that Nat put in my hand tonight:  not only the “I love you,” but even better:  he told me how he was feeling, for real.  He took care of himself.

Ned took Nat back and I am sad.  I pack up his bag and the feeling inside me was that this was so wrong.  So sad, mushing his crapped up pillow into the canvas bag.  His clothes, his bright colored clothes, and his messily folded jeans, all tumble back into the bag, that no longer smells like my home.  It smells like their detergent.  And why do they send him with so many clothes?  That makes my heart sink a little.  I know I am sighing a lot.  I imagine him unpacking the stuff, and jamming his pants into the drawers.  Why does that bother me?  Max does it, too — when he even puts his clean clothes away, that is.  Ben’s stuff rests eternally on his desk chair; the dresser seems to be merely a storage space for stuff he will never wear, all the hopeful Gap stuff in non-black.

They all make me sad.  I shouldn’t be sad.  So much to live for, so much to love. But I had children to have children — around me.  Now they’re not.

Why did Ned take him back?  Why didn’t I go with him?  It hurts me less to go sometimes.  And in this matter, I don’t think Nat really cares.  Sometimes I don’t want to draw out the non-caring.  It makes me tired.

You don’t get over some stuff; you get used to it, and then, suddenly, out of nowhere, even on a gorgeous May day, the wound is opened.  Not fresh and flowing like it used to be, but dull and achy, like a phantom limb after amputation.

I think that lawmakers should have to go through training, just like teachers do.  Teachers are required to have many courses in education strategies, child development, special needs; and then they also have to do internships, and learn on the job before they take charge of a classroom.  Lawmakers, on the other hand, are simply elected, and they serve based on whatever their experience or record may be.  When I was on our Board of Education (School Committee) a few years back, not one of us was an educator; we were laypersons elected for what we believed and had done in the community.  We were there as representatives of “the people” in town, and not as experts.  We had to meet with and listen to the experts’ recommendations (the superintendent, the assistant superintendents, department chairs, etc.) as well as to weight what we knew the parents and students felt (ideally) and make our decisions based on all of that.  A lot of responsibility and not a lot of expertise, but that is representative government.

What made a difference for me back then was whenever we were invited to take part in an activity of a particular group or issue. For example, we would read to a random classroom anywhere in the school system, on Dr. Seuss’ birthday; it was kind of a symbol of how reading is important.  The kids gathered around me; the teacher sitting off to the side, smiling.  Me, trying to make this children’s book come alive to them.  All in all, a small gesture, certainly one for the newspapers, and yet, not without its actual merit.  Just the half hour I spent in that first grade classroom at a nearby school taught me so much that I didn’t know about teaching.  It made it real to me.  It made me stop and think next time anything to do with “first grade” or “literacy” or “large classrooms” or “challenging children” came up.  However much more a School Committee member could attend events and meetings, made that much of a difference in our ability to represent because we had learned something firsthand, or at least, first fingertip.

Training does not have to involve actually going somewhere like I did.  I am reading Precious, based on the novel Push, by Sapphire, and getting a tiny but vivid training in what it’s like to live around crack addicts, survive child abuse, navigate the Welfare system, become homeless.  I thought I knew something about this just by reading newspapers but the thing is, reading Precious’ story is making me feel what it is like, just a small painful slice.  I caught myself remembering some quick, summary judgment I had made about how “of course, a victim of rape should get an abortion,” and then thought about how Precious feels about baby Abdul, her child and her brother(!), and how she fights to keep him with her.  This is the first time I understood how that could be so.  I also realized how much our social programs helped save her life.  So easy to talk about Waste and Big Government in the same breath, but do we ever stop to think about the millions who are actually helped by Big Government?  Precious was a victim, whose life would have remained shit in a swamp if she had not been able to collect Welfare, go to an Alternative Public School, and live at a halfway house.  All funded by the US Government.  That right there is a modern-day miracle of how the system works. And your tax dollars are going towards repairing the world.

So I got to thinking about how legislators have to vote on item after item with little knowledge about it, and certainly without any training around it.  They come to power with their beliefs already intact.  Often based on ignorance, or worse, on hatred.  But imagine if legislators were made to teach a class for twenty minutes, or work in an adult residence for a little while, or sit behind a Welfare desk.  What if they had to meet with the parties that would be affected by their vote?  Cutting the education budget?  Before you do, come in and teach in that overcrowded classroom, just for twenty minutes.  Against healthcare for all?  Live with an autism family whose insurance refuses autism therapy coverage and who cannot afford any interventions and whose child is in one of those overcrowded classrooms.  Against environmental protection?  Spend a little time in a country where there are no EPA controls and have fun breathing.

The legislator’s life would become much fuller; he’d have less time for meetings with wealthy and powerful lobbyists.  His schedule would be much more finely drawn.  His brain would be stretched and tired; his heart would be soft and worn.  And his votes would be infinitely more intelligent and compassionate.

All this time I’ve been saying that I have to be careful of being too negative about autism, especially around Nat, for fear of hurting him or others with ASD’s.  I’ve talked about the neurodiversity movement, of autistics and non-autistic family members who argue for the right to dignity, acceptance, and accommodation rather than for a cure.  Or, more importantly, they don’t want to talk about autism with disgust because it is a part of them.

I have tried to tread lightly because I don’t want to be part of the problem; I don’t want to hurt autistics who are fighting for civil rights and dignity.  Nor do I want to hurt other parents who are struggling to help and understand their autistic children to feel bad about what they do.  Even if it is to cure autism.  It’s not my business to criticize them; they are another family and you just can’t do that.  You don’t know what it is like for them.  You don’t know what they know.  You don’t know.

This weekend I started asking myself, “what if I were to think and act as if I really don’t know what it is like for Nat?  Eliminate all the years of assumptions, the labels (MR, DD), the interpretations that I’ve been laboring under.  What if I approach Nat the way I approached “A”, my friend’s son, the other day, that is, assuming in a new way?  Assuming that he understands many things?  I’ve been saying all this time that I believe Nat understands a lot, but that he “just has trouble” getting the words out.  I know it is more complicated than that; but what if it is not that much more complicated than that?  What if I think about that statement, and posit that Nat understands 75% of what people say?  Or 50%?  One third?

Let’s say that Nat actually does understand in some ways what is being said around him — and about him — but that he, like “A,” can’t do anything about it.  “A” is inside a physical form that interferes with his self-expression, his conversation, his interactions with the world.  So, many of those who’ve studied autism theorize that there is receptive language but not expressive.  And the more able to converse an autistic person, the more we hear about how they are aware of what goes on around them.

What, then, do I know about Nat’s reality?  He appears “out of it” when he walks around talking to himself.  But if he understands even a third of what we say around him, that is a lot.  That is enough.  That means that he has some recognition that he is different.  But does he know why or how he is different?

He orbits us, walking in and out of my mother’s kitchen this weekend, where the rest of us gathered to drink coffee and talk.  The noise level of several different conversations at once — Senator style — is pretty bad in there.  Nat is long used to not being a part of the talking, because something gets in the way for him.  He is smiling and chatting to himself, and yet when you address him directly, he stops and grows as still as a stone, as serious as a student in a difficult class.  He looks afraid, actually.  He labors for the answer.  What comes out is something that sounds young, it sounds innocent and “babyish,” and so we have come to feel that he is kind of babyish himself.  Our experience of him is that he’s not really a part of what’s going on, not listening, because of what comes out of his mouth.

But what if we are mistaken about Nat and his comprehension?  After talking to “A,” who has CP,  I am certain that we are.  Because this weekend I set aside all of my previous assumptions about Nat and I looked at him the way I look at Max.  Not that they are the same — not at all.  But I decided that I would not say or do anything to Nat that I would not say to Max.  I would not just go up to him, “Natty!”  and hug him.  Yes, I hug Max at times, but it is always with a lot of checking to be sure it is okay.

What did I notice?  That Nat hung around us a lot, watching quietly, until someone noticed him, and then he would start moving again, maybe even leave the room.  He would get more animated in his self-talking, walking away from us, less “reachable.” I wondered if the self-talking was maybe a defense?  A way to block us out — and our painfully confusing words, our talking-down ways — and have something of his own?

I asked this question years ago, when we first took the boys to Disneyland, when Nat was around 5:  What if he knows somehow that he is really different from us in that he cannot participate with us?  What if he knows, but doesn’t know why? What would a person do with that question, and all that it implies, if he didn’t know how to ask?  If he didn’t even have the inward words to work it out?  Nothing but noise, confusion?  What must that be like?

In the last two years I have seen tremendous growth in Nat’s abilities.  He willingly and competently goes to school and work, and learns new things without any trouble.  He controls his anger now, and finds ways to communicate what he needs, even though his speech level is almost like a preschooler’s.  He has friends, sports; he has preferred activities.  He can go and do just about anything you ask him to do.  He may not understand, and he certainly does not know how to ask you to clarify; but he will go and try to find that book you left in your room, or bring down the laundry.  Always.

I asked myself yesterday, in the morning of Mother’s Day, what if he really does understand some of what is being said around him — and about him — but that he can give no indication of this, just the way that “A” cannot make his words clear and sharp.  You have to listen very carefully to “A.” You have to take a lot of time and effort and focus.  So does he.  But you see that it is all there.

I’m not saying that it is all there with Nat.  This is not just about being able to talk.  There are certainly other issues.  I know he has some delays, processing problems, issues with connecting things up in his brain.  I know there are circuitry issues in his neurology.  But if Nat does comprehend some of what we are saying, then that is an entire universe of knowledge.  That has cataclysmic ramifications for us. It means that over the years he has learned ways of withdrawing from us because he does not know how to keep up.  Because he perhaps suspects that people don’t take him seriously.  That a lot of what he gets from me is this amorphous affection.  A lot of explanation, but perhaps in an overly simplistic way.  A lot of forgetting that he is really right there.

I turned to him yesterday and said, “Nat, I am sorry that I have treated you like a baby at times.  I know you have trouble talking, but that you understand a lot.  I am going to try really hard to just talk slower and wait for you to respond.  I am not going to baby you.”

He listened, looked at me, said, okay.  He looked serious, drawn brow.  I don’t know what he thought or felt.  But I do know that he thought or felt something, and that is so much.

Yesterday I ran into a friend’s son at Starbucks, while I was waiting for Benj.  I didn’t recognize him at first.  I did a double-take, because this was a young man, with a beard and all, but something about him looked familiar.  He was finishing an iced coffee at one of the central tables.

“Are you A?”  I asked shyly.  He smiled and nodded.  “I know your mom and dad,” I said, shaking hands.  We caught up a little bit, not much to say between a twenty-something and one of his mom’s friends he didn’t even remember, but I love his mom, so there I was.  And he was very nice.  He told me he was going to transfer to an art school nearby and study film.  I told him that Max would be studying film at NYU. I studied his face while he talked; I couldn’t believe how grown-up he was, and handsome.

“Well, anyway, tell your mom,” I said, smiling and getting into line for my coffee. I had that same feeling I get when I’m out with Nat; like I know people must be watching us and I’ll be damned if I’m going to make eye contact and let them get their shit all over me.  And spoil the moment.  Because I had really liked talking with A, and seeing how much he had grown.  After all, he has a fairly severe disability — Cerebral Palsy, I think — and he gets around in a wheelchair.  It’s quite an effort for him to talk, although he clearly enjoys it.  But in the years since I last saw him, he had become this young man, out on his own — someone I could chat with while waiting to get coffee.  That kind of growth really does happen.  Of course he made me think of Nat, and the gentle blooming I have witnessed in him the past two years.

I was telling Ned this morning, and the first thing out of my mouth was, “A just has so much courage.”  But then I stopped and said, “Well, actually, I hate when people say that about me,” about how ‘brave’ I am going places with Nat, working hard at my relationship with him, and his relationship with the world.  Brave that I’m his mother, doing the mother thing in such difficult circumstances is the implication.  As if there’s some kind of — choice involved?  He’s just my son, and I love him.

They are also expressing admiration, I know that.  And that’s what I felt about A, too.  But — when people say that to me, still, I always want to scream, “It’s just what I do!  I’m just his mother.  There’s no “brave.”  It just is.”

Same thing about my friend’s son.  This is just his life, and he felt like getting a coffee.

I have sent this letter out to my state reps and senator, to my US Rep and US Senators, too.  Feel free to adapt it to your child’s specific situation and send it to your government officials.  Just google them; they’re all online now.  Elected officials need specific, personal stories to make their case.  They want to hear from constituents.  Our emails and phone calls are their currency.  I have heard this time and again from the senators and reps I know here in Massachusetts — and I know a lot of them.  You should know yours, too.

All I’m asking is that you, my readers, keep housing for developmentally disabled adults on the front burner of our government’s priorities.  This is how you do it.  One email at a time.

Hello Senator____
Let me introduce myself.  I am the mother of three sons, the oldest of whom, Nat, is 20 and has fairly severe autism.  I have written two books about autism and many other pieces because it is just such an encompassing factor in my life. I love my sons, and Nat is a wonderful young man.

Now I am piecing together information so that I can secure Nat a safe and fulfilling homelife as an adult.  I am writing you with this issue in mind.

Nat currently lives at _____ and attends school there.  He comes home on the weekends.  Having him move out at 18 to live at his school nearly broke my heart but we had to do it, because of his aggressive behavior.  My 12 year old son Ben was terrified of him.  Anyway, Nat has improved SO much due to the round-the-clock efforts of the ___ staff.  He now holds 5 part-time jobs (two of which are at Papa Gino’s) and he still attends school.  He helps me when he’s home on the weekends, with food shopping, laundry, and housecleaning.  He is just a wonderful young man.  But he will never be fully independent.

I have spent most of this week meeting with all kinds of people about post-22 housing for Nat.  I have so far met with the Housing Authority president; with the Housing Advisory Committee head ___; with Combined Jewish Philanthropies, and one or two others active in Massachusetts affordable housing.

I also visited the ____Adult Residence housed in ___a few months back, which felt a lot like where Nat is living now __.  We love the level of care and attention Nat gets in the ___ residences.  I am thinking about the feasibility of perhaps through Project-Based Section 8’s and Massachusetts Residential funding for Nat, (not that Nat has gotten anything yet, because that can’t be known until he is 22) beginning a home for young men like Nat.

I want you to see what it is like for parents like me — and just imagine what it is like for parents who don’t have my energy and time (I work my own hours as a writer)!!

I am not panicking, but I am — shall we say — highly motivated and energized about his future!  I am asking you to do what you can to use your incredible energy and sharpness for the developmentally disabled populations, particularly the complex needs of the booming autistic population aging out of the public education system.  It feels pretty dire to most of us!

Let me know how I can help you in all of this advocacy.  I believe in you and in all of your excellent work in Congress.  I want to be able to continue that faith as Nat becomes an adult.

Thanks for listening,
Susan Senator
Address
www.susansenator.com

I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies).  I have not taught BB all year — I got burned out last year — and so I have not been in my stride.  Today was the second class.  And I was totally dreading it.  I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?”  I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing.  And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much.  Good luck with that, as Jerry Seinfeld would say.

The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!

To be honest, there are some Fridays where I think, “Argh!  I almost forgot, Nat’s coming home for the weekend.”  And, please God forgive me, my spirits plummet.  I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me.  So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.

There were so many times in his younger life when Nat was so difficult my life felt like a prison.  I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that.  It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself.  But loving someone and living easily with someone are two different things.  There was the bloody wrestling to the ground outside of the Stop & Shop.  There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat.  There was the clawing of Max’s hand at the Bertucci’s.  The screaming, screaming, screaming.  The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it).  The attack while I was driving.  The pouring of water in the handbag, the pushing over of little kids at the playground.  These things die hard in the memory.  It is very unfair to him.  That stuff, after all, is the disability.  Or, more accurately, the co-morbid conditions that frequently accompany autism.  There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap.  Intermittent Reinforcement, a most powerful psychological dynamic.  Rats.

He’s not like that now.  Now there is this fast-moving young man, very content to be himself, anywhere, with anyone.  He is game for anything:  a trip to the mall, Home Depot, a restaurant, a bookstore.  He will try on shoes, try new foods.  He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.”  He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for).  So what, then, is my excuse?  Get over it, right?

There is, however, my low-grade anxiety that is always with me, like a small, invincible infection:  the worry that somehow, what he does with his time is not good enough.  And it is that feeling that I dread on a Friday afternoon.  I have pinpointed it as of today, right now.  The feeling, the fear, that I am allowing a mediocre existence for my son.

Which is interesting, because that was exactly what made me dread Baby Bellies.  For the longest time I felt like I wasn’t very good at teaching because I could not reign them in.  I could not get them to systematically learn the moves.  I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring.  I have a memory for the bad stuff, that’s for sure.  The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening.  Of not knowing what level to teach, what to expect.

Sometime recently, it gelled, however.  I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions.  When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals).  Every now and then a pair of girls will have a duet they made up.  Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart.  The other girls wanted to learn it.  Then E starts in with her move, “which is kind of like jumping rope with a veil.”  “Just be careful not to trip,” I say.  Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…”  or “Pretend you’re…”  Those were my exact words when I was her age.  And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials.  Weird music, but nothing’s perfect.

So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned.  R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does).  K is just in her own world, wrapped in her turquoise like a blue mummy.  I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.

I got de fire in my belly today — and those flames are dancing around Nat’s future!  Where the F is he going to live in a year and a half?  I ain’t gonna wait around for no stinkin’ entitlements to kick in — or not.  Today I made two appointments:  one with a group called Specialized Housing, who have been setting up group homes for decades!!!  Another is Jewish Family and Child Services, part of Combined Jewish Philanthropies.  I am going to go to these people and pick their brains dry.  Call me the Housing Vulture.

Here’s the fantasy — and don’t tell me I can’t do it!!! As an autism mom, you must know that is the best way to get us going and doing it!!!!!!!  I am going to gather 8 or so guys like Nat (of course I’ve known them for years — stay in touch with those autie families, folks — in the end, they might just become your family).  I am going to go to our Housing Authority.  I am going to find a fixer upper near my town.  We will all pool our money and buy it and fix it up.  We will get assistance from philanthropic organizations.  We will pool our services to pay for one qualified live-in staffer.  The guys in the House will share a kitchen and a livingroom and have chores to the best of their abilities.  I will try my damnedest to get a job coach for my darling so he can continue to be the best darn worker Papa Gino’s has ever seen!!!

If I succeed, or when I succeed, I will write about how to do it.  Autism Parents of the World, Unite!  Our kids will not be lost. They will have a future, we just have to really really plan and try to stay awake and alive.

They never tell you what it’s like because they are still struggling with that realization themselves.  Tell you what it’s like?  I got my own problems!  So we all have to find out.  We all do, over time.  Maybe autism is your first time.  Childbirth itself was the first thing for me that made me realize down to my bone marrow that life was not going to the way I had planned.  Autism was the second thing.  I hadn’t even planned, actually; I had expected.  In my mind there was a semicircle of things spread around me that were possibilities, back when I was pregnant with  Nat — little girl storybook things like “he’ll look like me; he’ll look like Ned.  He’ll be into school; he’ll be kind of bad.  I hope he won’t become a criminal.  I hope he doesn’t have a disease.  I should breastfeed him so that he’ll be healthiest.  I’ll research the stroller safety, the crib bar distance.  I hope the cat will like him — what if they don’t get along?”  So adorable!  I was a baby, too.

Once Nat was born, the semicircle became a circle, stretching behind my back, to things I couldn’t see.  I had no idea, before his birth, how the worry about his pure survival would give me a permanent feeling of anxiety; it just would not go away.  How in the world could such a soft pink hairless boneless creature survive?  What?  It’s all up to me?  That’s just crazy.

But I got over that, inured to it, callused.  So I could just do what it took.  Become a young mother, no longer a carefree girl (well, let’s face it, I was never carefree.  There’s always something to worry about, after all.  As a fourteen year old:  will that boy like me?  As a ten year old:  will that new girl be my friend? As a six year old:  can we go to Old MacDonald’s Farm for my birthday?

So the young mother sloughs off some of that flawless youthful skin and suddenly has circles under her eyes.  Give up the damned dream of breastfeeding because how could it be the right thing if he howled like that, clearly starving?  No no, it could not be right.  So they were wrong about that.  The bottle was better for this baby.  What else were they wrong about?

Guess what else they were wrong about.  This baby was not progressing the way all the books said.  I could not interest him in anything.  Yet he was clearly happy.  Was it the case that babies were not all alike, that they did not all watch Sesame Street or delight in rolling a ball?  That they didn’t give a shit about other babies?  Like people, they were all different!

Gradually, I figured it out.  Or in sharp ugly bursts of awareness.  Oh.  Oh God.  It’s the worst thing that could possibly happen to a person.  It really is.  My child has something wrong with him. What now?  Penelope Leach and Dr. Spock and Brazelton had no answers for that one.  Neither did my doctor.  All the people I’d looked up to, suddenly the mask slipped and I saw that they were as young and stupid as I was.

When you see that, you lose years of life.  So I became a much older woman at that point.  I was “seasoned.”  I was seasoned so much I was like Cajun food.  My flesh became plump and yet not all that juicy.  I was completely thrust into the mother phase of life, where my job, my identity became all about being strong for someone else. I had to take extra special care of this child because he had something.

I became old beyond my years, as they say, and because I eventually figured out how to survive that stuff, I was deemed wise.  I was wise simply because I was not dead, and neither were my kids. There were more ugly surprises along the way, rabid bite-in-the-ass kinds of surprises, like sleep disorders, manic behavior, aggression.  Traumatized siblings.  But there were other issues, other tragedies, completely unrelated to autism.  I didn’t know that things could be even worse.  Terrible mistakes, irrevocable scarring. Things wrong with people, not just Nat.  Nat turned out golden and beautiful, strong-limbed but flexible.  Brilliant in his own way.  Max and Ben, they struggle, they are scary, too.  Children grow, all of them, no matter what they “have.”

And here’s the thing:  People leave.  They leave you, in all kinds of ways.  I find that now I am increasingly grateful for the ones I still have:  children, husband, parents, friends.  Life.  We never know for how long.  We forget, unlike the cavemen or the poor desperate Medieval folk, that we are completely vulnerable organisms.  As soon as we know that, once I knew that, I became old, like the boy wizard who read the Book of Knowledge and overnight had a long white beard.  I am on the other side, an older mother:  aware, all too aware.

The part of me that is wise, though, is not that I know so much.  It’s only that I now know it won’t last forever, and whatever it is, I am damned lucky to have it.

I use the puzzle piece symbol on my website, in a kind of loyalty to my younger blogging self.  I remember when Ned and I searched for a subtle and elegant puzzle piece that was in the public domain, and we eventually found my clear one.  Do I think of Nat as a mystery?  But I know him so well.  There are things about him that I don’t know, of course, but to assign a puzzle piece to him and not to enigmatic mellow Max or smoldering secretive Benj — not sure if that’s the best use of a compelling symbol.

The mysterious part of Nat, the aspect that fascinates me and gives me both joy and sorrow is his language.  Sorrow because I want more.  Joy because sometimes I get a little bit from him, and then I want more — but it’s a good kind of want.  I have always been interested in how people talk, their particular idiosyncrasies, their voices.  When I was a kid I loved doing impersonations and part of the secret of a good impersonation is to channel that person, to immerse yourself thinking of them and how they talk, and then for a moment, letting yourself become them.  It’s not that I get the timbre of the voice or the pitch or tones right — not like Rich Little or Dana Carvey, let’s say — it’s that I channel them wholeheartedly for that second or two.  It’s fun.  Benj can do it, too; and he’s even better than me at remembering precisely what a given person has said, so his imitations are amazing.

Capturing how a person talks is like finding an open door to their mind.  If you can think them and make their way of talking, you can kind of know them a little bit.  A good writer can find other people’s voices and speech patterns this way.  One of the best writers in that regard is Sharon Kay Penman, who writes good historical (non-bodice-ripping, except where warranted) fiction about old English kings.  Her best are Here Be Dragons, (about Llewellyn, the last king of Wales before it became an English add-on), and  The Sunne in Splendour, which is about the last of the Wars of the Roses, of Edward IV and his much-maligned brother Richard (III).  Pennman basically turns history on its head and rethinks Richard, building the case that he was not the Crouchback or the murderer of his nephews.  Rather, she draws Richard as a faithful, bright, but humanly flawed brother living in terrible political times.  In this story, the bad guys are the Tudors who basically steal the crown from both the Yorks and the Lancasters.  Not only does Penman get inside this famous story and find details — or create them — that really convince us; she also seems to have a feel for what the speech was like.  They talked 15th century, but somehow, it worked.  “Your life is in mortal peril, my Leige.”  I love that stuff.

Ever since Nat was a tiny guy, before age two, I have been fascinated and in love with how he talks.  I have also been terrified by it.  When he spoke only from his books, repeating lines over and over, exact same emphasis, it gave me the chills.  That’s because I didn’t know.  I feared something was wrong with him and this seemed the real evidence.  To write sincerely and honestly about this, I need to immerse myself in my younger self, grab hold of some detail or imagery that transports me to those days.  I have to sit still and imagine the scene, and allow the slow simmer of emotions begin.  I have to then type as I’m remembering, with little editing.

I no longer feel fear when I hear how Nat talks, because I now know, and have known for nearly two decades, what it’s called, what it means clinically.  Communication disorder, neurological problems (synapses not met, pathways closed off).  But the mystery of what this means about Nat remains.  Even that is not such a mystery.  Nat processes language very slowly, and needs or likes to repeat words and sounds.  He likes to distort words so that they become his own.

When Nat talks now, I feel something like hunger.  I want more.  And more and more and more.  It is delightful when he shares with me his mind and experiences.  Last night, for instance, he went out with his social group and they saw movie.  Ned told me that when he picked Nat up, they had a conversation about it, Nat-style:

“Nat, what did you do tonight?”

“Movies.  You ate pizza.”  [something like that]

“Nat, what was the movie about?”

Long pause.  “Dragons.”

And yes, they had seen, How to Train Your Dragon. No mystery, just perfectly to-the-point.  If I need to know more, I guess I’ll have to read the book/see the movie.

Tonight Nat referred to The House as “home.”  It stuck in my throat like a piece of dry steak; there’s nothing that will make that thing go down once it’s passed your teeth.  But I kept trying.  After he said that, I inserted the words, “The House,” and “tomorrow- when-you-come-home” several times in the conversation, because I am that petty.  So now he thinks of there as home.  And so what are we, chop liver?

I wonder what Nat thinks of this place, his childhood home.  What are his memories like?  Does he get shots of scenes shown incongruously with others from his past and present, like I do?  Does he suddenly see our previous home, his nursery blue walls with the Laura Ashley border, when he’s looking at the walls of The House?  Are words tied into the images, or are words too difficult, even in thought and memory?

When did I stop thinking of where I grew up in Connecticut as “home?”  Was it when I went to college, or when I got married?  Now when a childhood memory flashes before my inner eyes, it feels odd, like “did that really happen?”  Today, for example, when I posted a shot of a rabbit in my garden (see below) on my Facebook page, I was thinking of Dad.  Dad loves rabbits, identifies with them, defends their garden-destroying ways.  I love them, too, but I love sparring with Dad even more.  Dad reads Watership Down every May, for his birthday.  He knows the language of the rabbits intricately, and the way they thought as they made their journey to their new home.  He discusses the qualities of Hazel’s reluctant leadership, the growth of BigWig, the belligerence of Woundwort; he sees how each character has his use and purpose to the rest of the group in the warren.

When Laura and I were little, we played a game called “rabbits,” with Dad.  We would be crouched around the living room floor, pretending to eat lemon leaves and lettuce leaves, but eventually, inevitably, Mr. MacGregor (Dad) would show up and try to catch us.  He’d call for help from Mrs. MacGregor (Mom), but she seldom helped him.  That would have made it really an unfair match of them against us.  Mom would call things out from the kitchen or wherever, but Dad was pretty much on his own.  This was our game.  Sometimes instead of being Mr MacGregor, he would be The Trap.  He would lie on his back on the blue tiled foyer that was next to the blue living room carpet where our garden was.  Every so often he would raise a robotic arm or leg with a “chk-chk-chk” mechanical noise, because after all, he was a machine. I can see it and hear it as if it were yesterday, and yet I also see how strange this whole scenario seems.

Dad perpetuates our memories and our childhood by talking about the rabbits and The Trap every now and then.  He has an amazing memory, so he dredges up jokes and games from forty + years ago, so that we remember them as if they just happened.  And yet when I really think about them, it feels like they couldn’t possibly have happened to me.

So what does Nat remember?  When I try to quiz him, like fill-in-the-blank, from a favorite childhood book, he looks at me blankly.  It could be that he doesn’t remember; it could be that he doesn’t want me to do that.  After all, Max and Ben only barely tolerate my frequent dipping back to when they were little.  Maybe Nat feels the same?  It is so hard to know what he feels, what he thinks about.  I know that it is that way with the other two as well, but they still communicate so much more with their expressions.  It’s like I keep grasping at them as they were, and sometimes they let me catch them and they indulge me in the memory.  Nat doesn’t.  He doesn’t even think of this as “home.”  I guess he has made his way to the new warren and is very happy with his place in the group there.  And I’m supposed to be Mrs. MacGregor and not interfere.

Even though I am no longer a member of my town’s School Committee, I am still a part of the Massachusetts Association of School Committees and Superintendents email listserve.  A propos to a question posed by a School Committee Member from a different town, I wrote the response below.  Massachusetts is one of many states in our country that administers a high-stakes test that determines whether a student gets a diploma.  I have protested this policy ever since its inception, over 10 years ago.  Here is my argument.  If you agree, feel free to substitute your own information and state and send it along to your Board of Education, local newspaper, and state representatives.

What Massachusetts ought to do is administer the MCAS but not tie it to graduation, i.e., not make it a high stakes test but simply another standard by which to measure a student’s proficiencies.  Otherwise you do indeed get a system that discriminates — not only against better resourced school systems (per today’s Globe op ed) but also against different learning styles.

Let me give you an extreme but poignant example.  My own son, severely autistic, now 20, has benefited phenomenally from my town’s generous special education.  Despite great struggle, he has learned how to read, how to converse (limited, but still…), how to live in a group home, how to be street safe, and how to control his frustrations that come from such a communication deficit as his (he is no longer aggressive, thank God and thank a terrific education).  He also works 5 part-time jobs:  3 at his school, 2 at Papa Gino’s.  They are fading out his job coach because he has become so independent and capable.  He is now an educated person who can contribute to society.

If you measure how far Nat has come since he first started school at age 3, you would probably see off-the-charts progress!  And yet, because of our system, Nat will not get a diploma when he turns 22.  I don’t think he will care, but it always makes me sad because what does a diploma symbolize these days, if it won’t reward someone who has worked as hard and come as far as Nat?  To me it’s some sort of exclusive club membership, then — not at all what a public school education is supposed to be about.

It is very hard to get it right.  When Nat is home for the weekends, it is tough to figure out what he’d like to do, other than walking all over the house, again and again, or going from bed to couch to bed.  I suggest movies, reading, or music to him, but yesterday he kept saying, “no.”  I don’t feel I should force him to do something on a Sunday.  But I do wonder if he would be happier having a schedule.  At one point, I even thought I heard him say “schedule,” in his stream of self-talk.  I stopped him and I said, “Nat, we could make up a schedule.”  “NO.”  Am I supposed to pursue this, behaviorist-style, and force the matter?  At 20, if he views home as the total stimming ground, how do I change this view?

When I think this way, my head gets very murky, like I’m suddenly swimming in the part of the Bay that’s got the icky hidden underwater grasses.  You can’t put your feet down anywhere, because what’s in those grasses?  Some kind of weird tick things?  Crabs with open claws poised?  Way-too-soft mud?

I rewind a little and think in terms of real activities to do with Nat, that we both enjoy, rather than “what are Nat’s choices of activities I could set him up with?”  When I think the latter, I get overwhelmed with how few things I can think of.  But when I think, “It was nice and easy going to Starbux with Nat,” and I imagine the walk, and how long it will take, and the people staring or not, I almost always decide to do that.

Yesterday I did not.  It did not even occur to me, I have to say.  Yesterday was a day like an old puzzle you find, where you know there are going to be missing pieces, but you work on it anyway.  I knew from the moment I got up that I was not going to have enough to do.  I knew I was going to plant seven shrubs but this would be over in an hour.  I have a good book, and a new crossword, too.  Yesterday I had cleaned the house, top to bottom.  Laundry was chugging away. Groceries totally need to be bought, but I just didn’t want to.  Or I’d see if someone would do it with me.  Max busy with friends, Benj busy with some new animation project.  If I don’t know what I’m doing with myself, how can I begin to know what to do with Nat?

Bad thoughts beget bad feelings, so for a lot of yesterday I had a kind of low-level guilt running through me like a cold coming on that you think you can ignore.  Max and his friends saw the bare cupboard and offered to go buy a few things so they could make pancakes, bacon, and eggs for dinner.  Fine with me.  I hate making dinner, I hate food-shopping.  More guilt, but okay, go ahead, knock yourselves out.  I listened and heard some joking about how we were out of food, but this annoyed me because why do you think we’re out of food?  Because Max and his gigantic friends move through the kitchen every few hours like locusts.

I roused myself to bellydance for the time they were gone shopping (so no one would see).  They got back and got busy with the dinner preparations.  Nat kept traveling all over the house.   I started to feel bad that he had no social group this weekend, so no friends.  I wondered if he wanted to be with Max and his friends.  I wondered if he was sad being alone, on his house journey. I would have been.  I was.

(A tiny little thought flashes through my head right now, too little too late, but it says, “were Max and his friends gainfully occupied by playing video games all afternoon between snacking?  Is that better than what Nat was doing?  I think so because it is “social.”  But at least Nat was getting exercise.)

Max’s friend put out a plate of bacon, while they finished up setting the table.  The plates of fluffy yellow eggs were set at each place.  Nat was already sitting down, eating.  At that point, I should have told him to wait, but it never occurred to me.  I grabbed three pieces of bacon off the plate and gave them to him before we all sat down.  Because I wanted him to have “this little bit of joy, Poor Darling.”  Those were my feelings, the underlying ones.  Let Nat get away with not-so-great behavior because I feel sorry for him!  (I only realized this in the middle of the night last night).  Plus, what did Max think, seeing me just go and let Nat eat before everyone else?!  Did Max think, “oh, well, it’s what Nat does.”  Did his friends also accept it, because Nat is “different,” and so in a category by himself?

By trying to take care of Nat I think I was unfair to Max.  I think I was also unfair to Nat, by not treating him like everyone else.  Okay, okay.  Learn from it.  Next time, he waits his turn.  Next time, he helps and sets the table.  Think like Scarlett, tomorrow is another day.  And sure enough, it is.