I remember visiting the classroom they intended for Nat, when he was 3.  This was the first classroom, general special ed or some such oxymoron.  It was not autism-specific.  But what did I know about autism, anyway?  All I knew was that by sending Nat to this place it would mean that he was, indeed, special ed.  It would be more than a label:  it would be an entire cloak.

When I saw that classroom I felt choked with despair.  It wasn’t the room, brightly colored and filled with art that it was; it wasn’t the energetic, smiley teachers.  It was the other kids.  I looked at the other children and I did not see Nat there.  No kid reminded me of Nat.  They mostly seemed spacey and weird.  Yet Nat was also totally spacey and weird, but that fact made me hate that classroom even more.  Nat did not belong there!  That’s what my heart said; that’s what I said, but in the end we sent him.  And not only did he belong there; he needed even more than they could offer.

I thought about that day after visiting a DayHab, the first on a list we were given to visit.  The DayHab is where the significantly disabled often spend their weekdays.  The hours are 9-3, like school hours.  A van brings them there.  They have a list of personal goals to work on.  There are therapists that come in and out.  There are shelves of brightly colored toys and games, a computer or two, and staff walking around assisting.  Not all that different from many special ed classrooms.  But with adults.  I was prepared to be depressed.

But where once there were children that made me sad, there were now adults that did not, which is odd because kids are definitely cuter.  Yet is no longer hard for me to go and hang out with highly disabled people — because I’m used to it.  My way of dealing with hard events is to plunge in, my belief being that familiarity breeds enjoyment.  This is also the way Nat comes to enjoy things, too.  Exposure, repetition, familiarity — these build a repertoire to draw upon.  So I have always visited Nat’s classrooms — all my sons’ classrooms — and gotten to know the teachers and other kids; I force myself to get comfortable.

Nat’s classmates and roommates have, by and large, always responded well to me.  It’s the same principle as I follow with Nat.  You go in thinking the best.  You fill yourself up with hope and a sense of lightness, you surround yourself with a bubble of confidence that suspends you above harm.  And the other person feels that, and wants to grab on. The moment that circuit is complete, strangeness starts to fade, you lose your inhibition, and you can connect. Simple human nature.  Learning this has given me immense comfort and strength to walk into a room full of rocking, hooting people and say hi and feel interested in getting to know them.  Now, I have to say, it’s fun to do that, because for the most part, Nat’s housemates and the disabled adults I’ve met are eager for interaction even if they’re clumsy at it.  They are really glad to see new faces, even if they can’t talk to them.  And if you treat them with interest and openness, they will warm to you very quickly.  But this is true with any person. anywhere.

Back when I visited Nat’s preschool classroom, I didn’t realize that these classmates were other people’s children.  On some level, I didn’t even realize they were people.

The world, especially this corner of it, is full of people who really have very exacting requirements of what a person has to be like.  But you don’t have to.

I think that Nat says it best:  “It’s a different that’s okay.”

Today is Sunday, another cool gray day.  A New England day, a Boston day, where you can smell the ocean or at least the harbor.  A bleach scent — (ammonia somehow?) lies beneath the gray.  A white sky, a level brighter where the sun might be, but still no shadows, no depth.  In New England, you can get a day like this any time of the year and it will feel the same:  neither winter, nor fall, spring or summer-like.

And yet this is not an unhappy day.  I am going around, straightening, fluffing, washing.  It is a day for detergent, bleach, dryers, cloth.  Ned is napping under layers of pillows to block out our noise, a trick he learned from the days of the babies.  And the boys?  All three, upstairs in Max’s room.  Max is at his desk, Ben is playing Dante’s Inferno on the PS3, and Nat is lying on Max’s bed.

Max’s room makes the most sense for the three different boy branches to converge.  His is the only room with a wall-to-wall carpet; he insisted on keeping it when we first moved in, my creature of comfort.  Max has always known how to be comfortable, physically and spiritually.  As a baby he had layers of beautiful fat, he was all chub and chunk, round and pleasing.  And pleased.  Every word he spoke had an exclamation point after it.  His eyes had smiles at the corners.  And as he grew up, and shed the outer baby fat, he went tall, an easy height hovering over most other people, so that he could be above the fray, and choose his interactions.  His bed is covered with a never-washed down comforter, bought 27 years ago for Ned’s and my first bed.  I think the hay-like breath that it exhales is utterly relaxing in its old familiarity.

That’s why Nat’s there — I think.  His head on Max’s pillow, perhaps conjuring up the earliest days of his memory, sharing a stroller with his baby brother, almost twins.  When you show Nat baby pictures of Max, he says they are Ben, because to him Max was never a baby, always a peer.

And Ben sits up, focused, sharp, interacting with Dante’s imagination, or at least some software company’s version of Dante’s vision.  Ben’s huge brown eyes slide to me, when I walk in there, interested but wary.  Why is Mom here?  But he finds me interesting, still, only newly 13 and more boy than teenager.  His hands and feet are large but his face is still small, except for his eyes and brows.  He is always thinking, his mind jumps and leaps concepts and centuries, easily but always with the tiniest edge of misapprehension.  Or is it simply his own angle?

I’m here because I want to know if Max needs his comforter washed.  My arms and my head have been full of white sheets to be washed.  I don’t know, it just occurred to me that the comforter is so old and just the perfect haven for dust mites.  I have to wash mine regularly because of the recent arrival of allergies.  Does he need that?  As always, my motherhood concerns and insights occur to me not when I want them to, but in these flashes of intuition, sudden bursts of sunlight that flash temproarily outside of my own cave.

As Max rolls the question of the comforter around in his mind, tasting it like a fine wine or at least his favorite pizza, Nat answers for him:  “Mommy will go away.”

“No, I guess it’s okay,” echoes Max.

“Mommy will go away,” Nat repeats, speaking for all of them.  So I leave, on my own white cloud of laundry, so happy with the brothers.

It’s been raining all day.  During a break in the wet, Ned, Nat and I went outside to fix the arbors that hold (held) up our gargantuan wisteria vine.  The arbors, once glorious arches, were crushed into M’s during the winter, from snow sliding off our roof.  I wanted to wait until the blossoms were over before dealing with them; today was the day.

Nat held the screwdriver and he and Ned got a few of the rungs off, while I waded into the trunks that were wrapped like boa constrictors around the iron legs of the arches.  The leaves slapped wet fingers at me as I wrestled with branches.  My arms ached as I squeezed the jaws of the pruning sheers, forcing their teeth into the rain-softened bark.  “This is what it’s like being in the Amazon Rain Forest,” I said to Ned, ridiculously happy.  It was probably because I love working in the garden with him — it is a rare occurrence.  I doubly love it when Nat helps.

At one point, Nat was holding up the semi-detached arch, and as Ned stepped down the boulder steps, I saw the arch slip.  To my horror, and before I could reach it or get any words out, it hit Nat right in the neck.  “GO INSIDE, GO INSIDE,” Nat screamed, the very same cry he made as a two-year-old whenever he got upset.  Or maybe it was “go outside.”  Nat jumped up and down on the driveway gravel, jackhammering the stones into deep bowls under his feet.

“Oh, Natty,” I said, trying to soothe him.  But I also realized it must have hurt so much and, God dammit, it makes you mad when you hurt your head.  Who doesn’t scream and swear and want to punch something.  “It hurts, I know,” I said, “Just let it out.”  I did not tell him to calm down and stop screaming; I think that was the first time I ever just completely felt that the tantrum he was having was exactly right.  He jumped more, screamed more, his legs like pistons; his fists seemed to be waving him higher.

I led him inside when he was ready and he let me ice it.  It seemed fine, once I looked at it carefully.  When we were done, he sprung up and put his shoes back on, my brave young man, getting back on that horse.  Ned and I worked for a while longer, and then the rain came down in fat droplets.  “I guess we can’t take our walk, Nat,” Ned said.

“Take walk.”

“We can drive, Nat.  Where should we go?”  Ned asked.

“Drive to Starbucks.”

“Yeah, Nat, let’s do that!” I said.  “But first, I have to nap.”

I lay down with my head in Ned’s lap while he read and I fell into a deep sleep.  When I woke up, Nat was ready to go.  We got into the car and I got the idea to see a movie.  Ned and I decided on the new Woody Allen, Midnight in Paris. It was playing right in town, in 15 minutes.  I had no idea what Nat would think of it, but we figured we’d go anyway.  Nat readily agreed to candy in the movie instead of brownie at Starbucks, and after standing in a long line, miraculously we got tickets.  Soon we were in our seats.

Midnight in Paris is about serendipity.  A young writer takes a walk at midnight down some lonely Parisian alley and finds himself literally transported back to Paris in the 1920’s, in the car of F. Scott and Zelda Fitzgerald.  The movie was delectable as only Woody Allen can do it, making you wish you were beautiful and free in Paris.  I wondered what Nat was thinking about it.  Could have been a million things.  I felt content not to know, just glad that he was sitting next to me, okay with being there, unhurt from that stupid arch, shoving Junior Mints into his mouth.  We, too had our own bit of serendipity and luck, being transported for a while from the gray sleepy June day to the golden glory of Paris.  Nat watched quietly, paying special attention whenever there was music or singing onscreen.

When we got to the car, Ned asked, “Nat what was that movie about?”

Nat smiled, and said, “You fall down.”

Ned said “No, Natty!”  We  laughed — even Nat did — and I said, “As good a movie review as there ever was.”  And we went home, pleased with our own glory, of just being alive and together on a sodden gray day.

So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24/7 care.  Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.  He will have a home and caregivers for now and especially for when we are no longer able to do it.  What will his home be?  That is still the question.  If I can get all the pieces to come together in time for his transition out of school in November, then he can live in my envisioned group home, the one I’ve been working on for nearly a year.  But if that doesn’t work, there are a few back-up options, like another group home that is just beginning in a nearby town, or one that is already up-and-running.

That is excellent news.  As the DDS Liaison put it, “He will be safe and fed.”  Basic needs met.  But the salad days of public education entitlements are ending, the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit.

But this post is not about that.  I’ve been thinking about Max these days.  My feelings with regard to Little, Little (his very first nickname, which even then was said with irony, my 100th percentile baby boy).  The other day I brought up something at dinner that we’d talked about months ago, about NYU and the Tisch School, where he’ll be going.  When I started asking him about it, he said, “I don’t want to talk about it.”

I said, “But is there something — ”

“I just don’t want to talk about it.”  His face was red, and very sharply outlined, which is how he looks when he’s mad.  I felt this mild remonstration like a fingerpoke in my belly, and my face felt hot.  Here was Max, my gentle giant, setting a boundary with me in a really direct way.  Pretty rare occurrence.

The rest of dinner I ate quietly, feeling anxious that it would happen again, that anything I said would be snapped at.  And I wouldn’t know when it would happen or why.  I felt sad.

When I woke up this morning, it all didn’t seem so bad.  Max has to do this.  He and I have a great relationship, but we are still mother and son, and so this is how a happy-well-adjusted teenage son breaks away from a loving, supportive mother.  No matter how great the relationship, it has to happen.  Max is setting the boundaries, and I have to stand behind them.

I got to thinking about how different it is with Nat.  I have to set Nat’s boundaries for him, and the way I do that is by having him not come home several weekends a month.  I am doing that to teach him independence.  I have to do it for him, because he cannot do this on his own.

I think that’s why it has been so hard for me.  It is hard enough having Max changing the rules and dynamics between us.  But with Nat, I have to do this difficult and alien thing myself.  I have to make myself do it, the way I sometimes force myself to eat broccoli.  It tastes terrible, sometimes makes me almost vomit, but it is the healthy thing to do.

He’s not here this weekend, can you tell?

Last Thursday I discovered a litter of kittens in my shed.  They were golden-orange, just like the kitten Ned and I got when we were first married.  I called her “Kotyonok,” which means kitten in Russian, until we realized that her true name was Ballyhead, or Bally for short, because her head was shaped like a perfect ball (when you pushed her ears down).  Bally was a very wired cat, kind of crazy.

But when Nat came into our lives, Bally tried to bite him when he cried, and so we gave her to a shelter.  I was so sad about this that Ned went and got her back, but then I got scared for Nat again, and he took her back for the last time.  I asked him over and over if they would put her to death and he said “No.”  There’s a part of me that has always wondered if he lied to be kind, or if it was the truth, that Bally was adopted again and lived a nice life, crazy among some other humans.

The kittens in my shed felt like a second chance.  Karma.  I made a mistake with Bally Girl, and now, here were some new ball-headed kittens.I have become very attached to them.  But when we got back from a short Cape Cod vacation for Memorial Day weekend, the kittens and their mom were gone.  That night Max discovered them under our neighbor’s porch, and now the plan is to trap them with humane traps from the MSPCA and bring them in to be cleaned up, neutered, and vaccinated.  I want to keep them all, after they’ve been checked out, but unlike my Bally days, I’m now allergic to cats.  What does that mean, in terms of Karma, then?

I have been thinking more deeply about this, since the kiddenz showed up.  Something about them is tied to Nat in my mind.  Not just the fact that he was the reason I gave Bally away, but the way that he came into my life when I really needed to be needed.  That is exactly what I thought and wished to myself before getting pregnant:  I want a baby, because I really want someone to need me.

I got need up the wazoo with Natty.  But I want to make myself perfectly clear:  Nat was not sent to me because of my wish.  I do not believe that things happen For a Reason.  I don’t think the kittens came to me to give me a second chance with little orange cats.  I think that things happen all the time, but it is our own need that allows us to see them in a particular light.  I need some little orange kittens now, with my two older babies grown up and in the process of leaving to make their own lives as adults:  Nat is finishing school and moving to a nice home with roommates, and Max is going to college.  I need those kittens to fill the void that is opening in my heart.  But a different year, they would have been a curiosity, and I would probably have let Max deal with them.

It is more romantic, perhaps more satisfying to see the gifts in our lives as being Sent to us.  We want to feel important, unique.  We want to explain the singular occurrences in our lives, like autism and feral kiddenz.  But lately I feel that it is really just as good to merely be able to see something that is right there with us, and find that we are open to loving it and enjoying it.  Perhaps the gift is having the clarity to recognize a golden opportunity — or a golden kitty.

Below you will find a new PSA campaign to End the Word (raise awareness about how pejorative is the word “retard.”), and it should air tonight around 10pm. Remember, this is not about PC — although to tell you the truth, I am sick of PC-bashing. What the hell is wrong with being mindful of how ones words can be used differently? If I didn’t believe in the power of words, I would not be a writer, after all. This campaign is about getting people to think. You are still free to speak however you choose, but just know that if you use the word around me, you’ll get an earful.

Special Olympics is not perfect, but it never claimed to be.  In fact, the beauty of SO is that it began without a plan, just an idea in one mom’s backyard.  Aimed at people who also were thought to be far from perfect, SO has taught me that the only place we find perfection is in love, acceptance, and doing our best.  Click on the link and you will feel it, too.

Nat wins the gold in the 25 meter relay

Coming soon, in an e-book…

Dirt:

A Story About Gardening, Autism, and Other Messy Business.

By Susan Senator

susan@susansenator.com

Part I

Late February:  Frozen Ground

Chapter 1

“Eye, heeem,” Nick said.  He reached up and touched his open eyeball, and blinked at the unexpected jolt of pain. The pain spread, flashing red light everywhere.  He could feel the sharpness opening outward and he silently endured it, waiting for it to subside.  There were no sounds in his throat right now and he was glad.  His noises made Mommy talk to him, and there were always too many words itching deep inside his ears.

A few moments later, there was only a soft ache behind his lid and he opened his eyes.  They were clear again.  He looked skyward, and his eyes followed the rays of the sun to where they hit the porch door.  He liked the way the sunlight slanted when it went behind a cloud, like an eyelid closing.  He closed his eyes and rotated his head until he almost couldn’t see it.  The light became a tiny ribbon, shining across the back of his eyes.  Happiness coursed through him at the beauty he was seeing.  “Heee, light,” he said quietly.  Every now and then, his own words appeared to him and he could say them.  Letting them out was like bubbles popping, like the ones Dan used to blow. They popped, a tiny sound that he liked; Nick felt he could hear the tiny click each breaking bubble made.  Also that was how words came out of his mouth:  a sudden, round pop in the air.

“Nick!Whatswrongwithyoureye?”

It was Mommy, and her line of words flew past his ears, like a sharp, stinging wind.  He shut his eyes so that she would stop looking at him.

“What. Happened. To. Your. Eye.” Mommy said this the right way, with spaces of air between the words.  Nick loved air.  He liked to squeeze it with his hand, open, shut, open, shut.

“Nick!”

Mommy was very close now.  He could smell her skin, which he loved.  It made him want to sleep.  He knew she was waiting for him to talk, and his stomach squeezed itself. Then he realized Mommy was saying a lot of words again.  He felt them rushing up to him like water, and enjoyed the sensation, without trying to break them into words.  He closed his eyes while she talked, rat-tat-tat like when it rained hard:

“I know you won’t like this, Honey, but I have to look at your eye to see if it’s okay.”  She approached him slowly, and Nick felt her pry open his lid.  “It looks okay, just red,” she said.  “You must have gotten something in it and rubbed it too much.  Try not to rub your eyes, Nick.” Mommy let out a big gust of air and tilted her head, still looking at him.  Her eyes were so big, and he could see that shadow in them.  He knew the word for this:  “sad.”  He would never forget that word.  He saw it passed over Mommy’s eyes, like the cloud and the sun.  He hated that because it always spread into him.

Once she saw that he was okay, Emmy reached out to give Nick a kiss but then thought better of it.  A kiss would feel good to her, but not to him.  Nick suffered through kisses and hugs, but never offered them himself.  She sighed, breathing extra deeply to suck in the cold air so that it might freeze the flare-up of sadness before it got any worse.  She walked through the garden, back inside the house.

She hadn’t noticed it before, but it looked like a wild animal had been let loose in there.  Henry’s junk was strewn everywhere.  She started gathering it into a pile for him, so that she could walk more easily through the living room into the kitchen.  She found herself staring at a notice that had been stuffed into Henry’ backpack. Henry, although newly fourteen, still did not mind his mother going through his backpack, or cleaning his room; at least she thought he didn’t. Her hand pushed aside a half-pack of Juicy Fruit gum (were they allowed to chew gum in school these days?), a crumbled lunch bag, a rubbed-raw binder with Green Day written in big letters and then “sux” in Henry’s handwriting right beneath it. Finally she seized on the usual small pile of flyers and sifted through. An offer for cheap tickets to several performances: Boston Ballet; Flying Karamazov Brothers; Alvin Ailey. She tossed it.

A torn note, written in smeary gray pencil.  Henry’s handwriting.  It said, “play structure — J.”  The rest had been ripped away.  Emmy suddenly felt a pang; guilty to be going through his stuff, she supposed, because this was obviously personal business of Henry’s.  Henry’s secret life.  She smiled, thinking of him and his messy head of hair. She was so proud of his emerging independence, achingly proud.  She embarrassed him with her overflow of love, she knew that. It was hard to control, hard to get things right with a crabby teenager.

She put the backpack away, and walked back to the window to watch Nick.  He was standing still in the very center of her brown, dead garden.  The tendril of sadness unfurled, fully this time. She had thought she was long inured to that kind of pain by now.  Nick was fifteen, after all.  Why was she still susceptible to sudden waves of grief?

copyright, May 2011, Susan Senator

It’s different.  Of course it’s different.  And here’s how:  because I don’t know what he knows.  I don’t know how he understands things, and that is a very unfair thing.  And that is why I think I will always be a hovermother.

We tried another House weekend this time.  It was bad timing because the House staff did not have him call for several nights last week and I was out other times.  I did not get to connect.  I hate that.  What does he think of that?  Does he care?  How far in does it go?  Or is it like Max or something, he notices but he’s okay, because he’s Whole?

No, I’m not feeling sorry for myself, and if I am, why the hell should that matter?  Why are we all so set on being Strong?  What is disgusting about being weak, or sad?  Goddammit, I am so sad.  I am supposed to be letting him get used to the Adult World (sorry for all the upper case, but that is how the words seem to me).  This is not something I am being forced to do, so please don’t tell me that I don’t have to.  If you do I will not print your comment.  Do not tell me, because you don’t know.  Ned and I are doing this.  We are doing this.  And I hate it.

And just because it makes me sad doesn’t mean it shouldn’t happen.  But I am not like others who can tell themselves truths and then move on.  I don’t know how they do that, how they convince their feelings to behave, to go away.  I can’t.  Mine just hang around, clinging to me, telling me what is real anyway.

My sadness is real, and Nat’s adulthood is real.  He is at the House, he doesn’t always get to call, and I don’t always get to call.  My other sons live their own lives and sometimes it feels like Ned really does, too.  And then it feels like I’m the only one living and thinking about Nat.

In some ways, I wish I’d never let him go.  Anywhere.  Back when he was first diagnosed — “diagnosed” makes it sound like they determined that he was sick, but he was not, he was still Our Nat, but he now Had Something.  Something he’d had along, but we didn’t know, and why did that have to matter?

Sometimes I wonder, stupidly of course, why does a person have to go away?  If he’s just not ready?  What the fuck is Tough Love?  That is an oxymoron.

Back then, I was told, like I am today, that he had to go.  He needed school, not his home all the time.  It was home that was not doing for him what he needed.

But home was me.  And Nat at home was our reality.  If I sent him to school, then didn’t it mean that reality had shifted, and he was what they were all saying he was?  I still can’t help it, a part of me feels that They changed him, with their stupid diagnosis and their special education.  They made it real by calling it a name.

Shit, I’m sitting here writing and crying.  Really, really quietly, pretending I have a sniffle.  Max is right next to me, working on something on his laptop.  Does he know I’m crying?  Is it just “Oh, there goes Mom again with a mood swing.”  Or what?  I don’t even know what his reality is, but you know, I really do know enough what it is, because there is feedback I can understand.

Why do Nat and I have to speak a different language?  Why is mine so word-heavy and his so much movement and silence?

So we all decide it is time for him to start dealing with change because 22 looms large and ugly.  There is no clawing it back to what it was, no matter how much I pull at it.  Just like school, it is just ripped away from me.  But I don’t heal.

I’m going there today to take him out for ice cream.

We have a video of Benj, from the time that he was born through 11 months.  We would just pick up the camera, shoot for a little bit, and then put it down, catching bits of Benj, Max, and Nat over the course of 1998.

One of the segments is a quiet moment in the diningroom, our old house, the yellow one, before this one.  The diningroom there was beautiful.  It had gray walls with cream trim, and there were french doors that opened out onto a tiny garden.    The camera zooms in on eight-year-old Nat, standing before the stereo in there, while Raffi sings, Thanks a lot; Thanks for all I’ve got. It’s just Nat in the room, and I am holding the camera on him.  I say, “What are you listening to, Sweetheart?”

And Nat turns around, and his eyes look like a hunted deer’s.  He has big buck teeth, and he is holding his hands out, with his fingers splayed, as if he’s in pain.  “Fanks A Yot,” he replies, and he thrusts his fingers from both hands into his mouth.  I continue filming him, and he says, “One-two-free, go!”  which was his way of telling me to finish filming and leave him alone.  I can hear myself giggle behind the camera because he is so clear in how he doesn’t want me there, and so cute. “Okay, Sweetheart,” and the camera shuts off.

Tonight Ned referred, laughingly, to “Fanks.”  I laughed, too, but then I also remembered Nat’s wild, haunted look back then.  Suddenly it was like I was there, seeing him like that, but out of my current eyes.  He was so stressed out, I could really feel it now.  But I also remembered how I felt then, with such a tenuous hold on Nat.  Back then he was beginning to be aggressive with us, and certainly withdrawn.  His fingers were often splayed but also crossing each other.  A picture of discomfort.

Back then I was so concerned with controlling him.  I was so scared of him, so scared for us.  Where was it all going?  What was he going to turn into?  He was already kind of wild.  Feral, with those teeth and eyes.  So alone, snarling in the corner.  And all I could think back then was, “Make it stop.”  I was in pain, too, because my family felt so defective.  We were falling apart, it felt like.  I had this new baby, but I couldn’t provide him with a safe, secure family.  And my Maxie was already learning to be careful, so careful.  I just needed all the bad to stop.

I wish I could have done a better job, better than damage control.  I wish I wasn’t just maintaining, staying afloat, only finding tiny moments of pleasure behind the camera, filming him but not helping him.

I don’t think I ever thought, “Oh, Natty, come here, sit down with me” the way I would now.  I had no idea I could talk to him that way.  But maybe back then I couldn’t.  Maybe he and I have both grown up and changed.  He doesn’t get that wild look anymore.  He doesn’t splay his fingers, he just walks faster and talks it through to himself.His eyes now are rich blue, always, and they are opened out to the world, to me.  He sees us.  He notices things.

How did he get to this point?  How did he shift from being so scared and bitey, to this capable young man?  Was it a slow evolution, tiny milliseconds of progress undetected by the human eye, or sudden jumps, moments of flashing revelation?  I guess it was both.   Fits and starts, periods of pain, followed by the joy of relief.

And now he’s gone, living in the school residence.  This was not a Home weekend, so I haven’t seen him since Sunday.  I still worry that he’s not happy, stressed-out by unknown forces.  But I have no real reason to believe that.  He has a lot to do there, both fun and productive things.  They went into Cambridge today, a bunch of them from the House.  He didn’t call tonight, and I miss him.

I don’t know if I’ve thought, “Make it stop,” for years.   I guess tonight I feel like, “Make it come back.”

Every so often I get filled up with happiness and it’s gotta go somewhere.  I try to make it tangible, to articulate this joy because I love to think in words.  So I make these lists I call “Keys to the Universe,” of things that make me happy, whether mundane or poetic.  Things or activities or dynamics that are no-fail, from the superficial to the significant.

I think we should all create these lists every now and then, just as reminders that there are good and great things in our lives.

1) A hard bike ride that turns out to be easy.

2) Alleve muscle relaxant.

3) Paul Simon’s song Graceland.

4) Turning the corner on Clovelly Road.

5) A “yes” from the Washington Post.

6) The three sons I’ve created in my novel, Dirt:  A Story of Gardening, Autism, and Other Messy Business.

7) Ned’s face.

8) My new bike shoes.

9) Boca burgers, the flame-grilled ones.

10) Hot shower

11) Great nap

I have really been thinking about this different set of standards we have for disabled people.  We think that we have to handle our guys with kid gloves.  This weekend I was with my family at my childhood home in Connecticut — as enlightened and loving a group as there can be — and I was struck by how it was still difficult for some of the family to address Nat directly about things. “Just ask him,” I kept saying to people.

People in general are skittish around Nat, and I can’t blame them, he has been volatile in the past.  Plus you don’t want to have an interaction that falls flat; it just doesn’t feel good.

But every day it seems that I am seeing more and more of Nat himself.  Nat, without limits.  I am seeing him fully, without a barrier of assumptions.  Just him and me.  I find I explain things to him assuming he understands a good deal of what I’m saying, even though he seldom answers, and if he does, it is with this baby-talk kind of simplicity.  When someone is as adorable as Nat, it is difficult not to let that fact take over how you treat him.  I keep saying to myself, “He can’t help how his speech comes out.  He probably doesn’t feel satisfied with the way he talks.  Imagine how that must feel.”  So I don’t want to add to his potential unhappiness, by talking down to him.

When others talk down to him, not realizing what they’re doing, I feel so bad for him now.  For people to talk about him in front of him:  it makes me want to cry.  How patient he is, to put up with that.  How frustrated he must feel, to be aware of his difference, his clunky tongue and knotted words, and not to be able to set people straight.  To feel compelled to talk to himself, unable to break the habit because it feels so good, but also to know on some level that it sets him apart from everyone.

The torment of having an autistic child is not knowing what he knows, so you don’t know what level to interact.  And you don’t know what to hope for.

More and more, I am talking to Nat without adapting anything.  Yesterday I got him to calm down over something very upsetting to him — my brother in law was wearing a sports jacket, and to Nat this looked like something you should only wear outdoors.  I had him sit down next to me.  I watched his visible efforts to get this not to bother him, but he couldn’t.  He covered his ears, wrung his hands, walked and walked, muttered about “outside,” and was just so unhappy and frustrated.  I watched him running around.  Other family members watched, too, but I don’t think they understood how I could be bursting with pride.  For I could see how he was struggling so hard not to escalate.  You could see it in his panicked eyes, his busy hands, his stomping.

He did not escalate.  But he needed help.  And I knew that and I stayed with him.  Finally I found a photo on my parents’ fridge, of my brother-in-law in a sports jacket at an inside event!  Nat relaxed soon after that.  And now he knows.  Because I talked to him and he understood.

I was having dinner with a friend tonight and we were talking about the various autism programs around the state and their philosophies.  This friend is a colleague from the disability advocacy community, and he has had decades of experience with all of the programs and players in the adult disability community.  He has helped me plan for Nat’s group home, and he has explained all of the issues and challenges I have to confront to make this happen.

We were talking about how autism school founders are very passionate and forceful personalities — they have to be to do what they do — but that sometimes the schools end up being too dogmatic for anyone’s good.  Nat’s school is a terrific program, but their flaws are that they are too afraid of lawsuits, so they are too risk-averse; and that they are too invested in behavior modification.

But parents do it, too.  Risk aversion may not sound like a problem, but without risk you cannot have growth.  You have to be able to assess a person’s abilities and potential, as well as the moment and circumstances, and then try it if the difference between the former and latter are not too great.  You have to try things in order to open up your world.  You have to be willing to fail in order to succeed.  It’s a cliche for a reason.

Nat learned to ride a bike independently because I let him ride around the block, away from me.  I couldn’t help it; he just took off.  I had to pray he’d be okay.  But I had a lot of evidence to let me feel that he would be.  Why not?  Just because he’s disabled doesn’t mean bad things will happen to him more than if he were not.  And didn’t I feel just as terrified the first time Max got behind the wheel of a car?  But I still let him practice driving.  Risk needs to happen with our disabled kids, just as it needs to happen with our non-disabled kids.

We say, “Well, it’s just different with my autistic kid.  I can’t explain why.”  You know what?  We have to explain why.  We have to get to the bottom of that.  Because we might discover that it is irrational to feel that way.  There may actually be no real reason that the autistic child gets the kid gloves and the normal kid gets opportunities handed to him.

Too much of any one philosophy is probably too limiting.  We are human and we get sick of things.  Stuff loses its efficacy.  You need to change it up sometimes.  You need to step outside of the lines once in a while.  And so I remember a couple of times when Nat’s school and I bumped up against each other, and I just wanted to write about it so that maybe a reader or two can learn from this.  The first time we disagreed was when Nat was having a lot of outbursts of aggression.  I wanted the school to deal with Nat in their way, which was why I was sending him there, but I also wanted them to have Nat apologize to the staff or student that he’d hurt.

This being a behavioral school, there was no way they were going to draw attention to the undesirable behavior by having Nat apologize:  “I’m sorry I hit you.”  That would cause him to focus on the hit and to see that it was a big deal to that person, something that got attention and potentially become something that was therefore rewarding to him.  But, I would argue, Nat needs to learn real-world behaviors and consequences; he needs to know how to apologize.  He needs to understand that his actions have an effect on others.   Now Nat apologizes.  Not only that, he tells me when to apologize, by saying, “I’m sorry I yelled at you,” if I yell at him.  That is a beautiful thing.

Take a look at this utterly wonderful comic.

Peter Gerhardt’s message about autism and sexuality is revolutionary in its very simplicity:  Sexuality is one of the most basic elements in our lives, and is inherent to what it means to be human; sexual behavior is one of our most vulnerable areas of our lives; and sexuality is a basic human right.  Therefore, it is of the utmost importance that we educate our autistic loved ones in appropriate sexual behavior to that they can keep themselves safe and happy.

Peter spoke yesterday at the LADDERS Conference in Massachusetts.  He made it clear from the beginning that he is not talking about people having sex, but rather, he is talking about sexuality as a defining and human characteristic of all of us.  Sexuality and sexual feelings are so basic, so important, and yet, there is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well.  This was not to be a talk on how to or whether to… but rather, what every human being, on the Spectrum or not, should know about safe behavior.

Stunningly controversial and yet utterly necessary.  So difficult to talk about, to think about, and yet, what do we all want for our children:  to be happy, to be safe.  What do we do towards that end, given that sexuality makes them so vulnerable to, frankly, disaster?  Peter and other experts suspect that somewhere around 60-80% of folks on the Spectrum will experience some form of sexual abuse in their lives.  This doesn’t mean rape necessarily, Peter pointed out, but that, too, is in there as a possible danger.

The lack of information is astounding.  There is nothing written on teaching ASD women about menstruation.  Nothing.  That means that every parent of every ASD girl has to wing it.

On one hand, we as a society are so out there when it comes to sex.  Peter pointed out how fascinated we are with sex — hundreds of slang words, Internet obsession with sex, debates about sex education in regular classrooms, teen pregnancy, innovations in the sex toy industries(visit Plug Lust for a wide selection) — and yet how telling that for some of our most disabled people, we are utterly silent.  What is implied by society’s attitude here, the silence, the lack of info,  is that a) people on the Spectrum do not experience sexual feelings or b) people on the Spectrum can’t be taught about sexual appropriateness.

Wrong and wrong.  We may not enjoy the task, but we have to be able to face and talk about our ASD children’s sexuality as something real, natural, and in need of guidance.  Peter made the point several times that whatever we have statistically in the neurotypical (“normal”) population, we can assume that we have in parallel in the autism population.  That means there is homosexuality, fetishes, fantasies, transgender issues.  We just don’t know about it.  The feelings are there; but because of communication disconnects, we don’t know about it and many on the Spectrum cannot express it.

I wish we could have a Public Service Announcement about developmental disability that says something like this:  Autism:  Everything you know about it is wrong.  Start from there.  Look at all of our assumptions as just that:  assumptions.  Autistics, no matter their functioning level, are full human beings and all that entails.

Does that scare you?  Does it sadden you?  Okay, then, deal with that.  But do not make the terrible mistake that you don’t have to help your autistic kiddo understand about his body and safety, because you are asking for trouble of the worst kind.

So what do we do?  Peter has what he calls The Five Year Rule:  always think ahead to what things we will need to have in place five years from now.  If the 5-year-old is running around the beach naked, we want to be sure he doesn’t do that at 10.  If an 8-year-old is touching himself in the classroom, we want to make sure he understands that he cannot do that there and then when he is 13.  Or 15.  We may have to start teaching him time and a placet now, if he is on the Spectrum, because the longer difficult behaviors go on, the harder they are to redirect.

Keeping the ASD child’s  future in mind, we need to also think about how to teach what they need to know, given their particular learning style.  If you have a person who is a concrete learner, a black-and-white thinker, then you’d better be sure that you are being clear and literal.  Do not put a condom on a banana and expect someone to be able to generalize this to their own bodies.  Use realistic photos, real words.  Keep the message simple and repetitive.  Peter even advocates allowing some silliness into the conversation, to break the ice.

Teach about what Peter called “The Circles of Comfort and Safety:”  who is in your life and what is their role?  The innermost circle is family members, loved ones, closest friends.  These can help you with personal needs like bathroom help.  Next circle, friends, cannot help you with that level of need.  The Circles illustrate who can and cannot touch you, even on the arm or the head.  It is all very well-defined.

You have to think about precisely what you don’t want to think about when you are a parent:  what your child needs to know when you are not there to buffer him.  You need your child to know to lock the door of a bathroom stall.  You need your child to know how to say “no” in one way or another.  You need your child to know that masturbation itself is not a crime but that it can only be done in the privacy of ones bedroom:  appropriate time and place.  You need your child to know who can help him and who should not.  If we use pictures and words that are not symbolic, but rather, visual and accurate and direct, we will probably succeed to some degree.

If we don’t know how to teach this, then we parents must start learning.  We must start demanding of our professionals that sexual safety goes way beyond identification of body parts.  Sexual feelings and sexual safety are a basic human right, for all humans.  The first step towards helping our autistic children lead whole, happy, and healthy lives in general is to end the silence and embarrassment over this topic.

I have an idea rattling around in my head, for a book project. Tell me 1) who is your autism or disability leader/rebel/outside-of-the-box thinker and 2) what have they created/figured out that distinguishes them? Mine would be Ari Ne’eman, Temple Grandin, Peter Gerhardt, and Eunice Shriver, for starters. People like that, who have begun a movement or figured out something incredibly helpful.  Send me your leaders, your heroes!

The Coalition for Brookline Autism Parents (CoBAP)
Invites you to
An intimate evening with Susan Senator,
local and acclaimed author,
Making Peace With Autism:  One Family’s Story of Struggle,
Discovery and Unexpected Gifts
and The Autism Mom’s Survival Guide:  Creating a Balanced and Happy Life
While Raising a Child With Autism

This SUNDAY, MAY 1st, 2011 • 7pm
Boston Institute for Psychotherapy
1415 Beacon St. • Brookline, MA

Space is limited. Please RSVP to: [ mailto:cobaprsvp@yahoo.com
]cobaprsvp@yahoo.com or call Beth at 617/566-3652 for more information

Nat made his nightly call tonight and he sounded so small, so quiet.  I felt that familiar pang immediately, of wanting to go to The House and look at him and get a sense of him.  Of course I could have, if I wanted to.  But I also didn’t want to.  I am tired, I need to be here.  And nothing is wrong with him or The House, I know that.  It is just a pang, or a ping, a question.  Is he okay, the words whisper and blow coldly across my heart.  I know he is.  But I just can’t let go.

Letting go is one of my most difficult, biggest struggles.  I know how to do it, how it actually feels to let something go.   I have certainly let many things go in my life, or I’d be miserable, or insane.  But I have so much trouble with it.  I can’t visualize how it feels to drop someone from your everyday consciousness, even one or two relationships that are clearly not good for me.

But I don’t mean Nat.  I’m certainly not trying to do that with Nat.  Others tell me I have to let him go, because he’s grown up.  The problem is, I don’t believe that he is grown up enough.  Stop telling me I have to do that, just because he’s 21.  And stop telling me I am treating him like a little boy.  He’s not.  I have the utmost respect for him.  He is not a baby even though his words and expressions are sometimes so innocent and youthful.  No, it is none of those things.  He and I are just not there yet and that is going to have to be okay.

I don’t have to let him go yet.  We have time before that.  I should be letting him go when I’m older and closer to not being able to care for him.  I don’t mean last possible minute; I just mean that it doesn’t have to be now.  I have to believe that when the time is really right, it will be easier for me.  Just like letting him move into The Residence:  it was doable; not easy, but doable when he was 18, far more than it would have been when he was 11, when we first considered having him live away from home.  Back then, because of Resperadal, we had the choice at last, we had a calm island we could all get to, and so we were given time to work things out with Nat so that he was okay again.  I consider Resperadal a gift to our family, a gift to Nat.  That drug allowed us to hold onto him until he and we were ready for that big change.  And lately, he has not needed it quite so much, so we have been decreasing his dosage.  That he can handle that is another miracle, another gift.

When I hear his wistful voice these days I wonder how I can reach him, if he doesn’t live here most of the time.  I am not wondering how I can stop wondering.  I am not looking to let all that go.  I have done a lot of that stretching, and so has he, but now, enough.  I need to feel close to him again.  I need to hear the fullness of his voice and then I know I have done my job.  For today.

1. Thou Shalt Love Your Child No Matter What (I am That I am)

2. Thou Shalt Not Worship The False Prophets of Autism (No False Idols)

3. Though Shalt Not Make False Promises or Claims To Others About a Cure (Thou Shalt Not Lie)

4. Remember a Happy Day and Keep it Holy (Remember The Sabbath)

5. Honor The Mother and Father — Thine Teachers and Doctors Must Honor You, the Parents, and Vice Versa

6. Thou Shalt Not Hurt Your Child With Unproven Therapies (Do No Harm)

7. Thou Shalt Respect Your Child’s Rights To Privacy and All Self-Expression that is Non-Injurious (Protect Their Sexuality, Physicality)

8. Thou Shalt Not Claim that Autism Has Stolen Your Child (Thou Shalt Not Steal)

9. Thou Shalt Not Speak Ill of Other Autism Parents (Don’t Be Part of the Problem)

10. Thou Shalt Not Wish For What You Think Another Family Has; Thou Shalt Not Compare Children (Thou Shalt Not Covet)

And remember, that just as The Old Testament, otherwise known as The Torah, the Jewish Bible, says that there are actually 613 Commandments — so there’s way more where that comes from. Also, interestingly enough, the Commandments are also referred to as the Mitzvot, or The Blessings. Think about it.

Nat has invented his own form of lying.

When he came home from school Friday afternoon, I noticed he was losing his voice.  All of the “silly talk”  was silly whispering.  As soon as I remarked on it, Nat said, “Social group.”  Anytime I pointed out that he was sick, he would say, “Social Group.”  So he was letting me know he was sick by basically saying, “please let me go to social group anyway.”  Yet he would never say, “Yes,” when I asked him if he was sick.

The next day his voice was almost gone.  And he had a swollen pink goopy left eye.  “Oh Nat,” I said. “You have pink eye.”

“Circus,” he whispered.  Saturday they were supposed to go to the circus.

“But Nat, you’re sick.”

“Circus.”

Nat had drawn a line in the sand.  And I hate disappointing him.  But he is so cute, so wide-eyed (at least his right eye was) and transparent in his desires.  So honest.  And yet also dodging the truth:  pink eye.  A pink lie.  So against my best judgment Nat went to the circus.

Today his eye was cemented closed by that conjunctivitis crust and his cough is even juicier.  We have no activities today.  But our doctor does have a few Sunday hours.  “Nat, I’m taking you to the doctor today.”

“Yes,” he whispered, accepting a warm compress and a blanket.  Now it’s serious — now that there’s nothing fun planned!