Susan's Blog

Sunday, June 27, 2010

Just Get Out There

After such a happy weekend, I ought to feel happy, but I’m not.  My feelings swirl outward and become thoughts — about Nat.  I feel that same 20-year guilt, still there, still unnamed, though I write and talk about it a lot.  I am still not satisfied with the shape my words have given this feeling, and this dissatisfaction drives me to write yet again.  My latest “cri de coeur,” a friend calls my blogging.  Yes, it is exactly that.  It is my heart asking in its own mute way, “WTF?”

I try to start outwards, looking at him, trying to match the inner feeling with what I’m seeing.  He’s laughing, he’s giddy with his own thoughts; but what are they?  I look at him and I see that Nat is so very alone, not engaged with anyone or anything.  I think in that same pattern, after all these years.  I think that I should take him on a walk.  I imagine the walk, down High Street, the long wait at the intersection, clammy skin, annoying cars.  I don’t want to get hot.  So I don’t do it.  I don’t say, “Nat, want to go to Starbux?”  I know he’ll want to, but I don’t say it. I don’t want to.  I’m trapped in my guilt and my inertia.

Meanwhile he moves from seat to seat, smiling, chatting, and we are all so used to it, but when you really think about it, it seems bad.  The old messages are still there:  the teacher who said that “anything he will do in life will only be because you have pushed him to do it.”  Something like that.  But no one pressures me like that anymore.  No one tells me what I should do with Nat.  Everyone assumes that I do it already or that there is nothing left to tell, that I am almost done.  Find him a good adult living situation, and you’re done.

I’ll never be done, probably because I don’t want to be.  Probably because of this same vague dissatisfaction, guilt, heartache, whatever.  Sometimes I feel like I waited for Nat my whole life, and when I finally had him, I didn’t know what to do with him.  Eventually I learned that I did know, and that there was nothing bad.  But days like this, the doubts spring up again, and it feels like an indistinct Something Bad has invaded again, like a sudden bad smell.  And suddenly, it’s not enough, I haven’t done enough.  And yet, here I sit.

The feeling sits there, entering through my eyes as I notice him making his circuit.  Maybe if it were Joyful House Stompies I would not feel this.  But what I’m seeing and hearing is Run-of-the-Mill-Talkies.  A lot of circling near the front door.  I’m noticing that he’s by the front door, as if ready to leave. He really wants to go to Starbux.

And now I know what I am going to do, and the noxious guilt starts to lift like morning mist.  You know, come to think of it, it’s not really that hot outside.  Maybe I’ll take just a little walk with Nat, see where we end up.

Tuesday, June 15, 2010

Favorite Things

It’s been a while since I’ve done this, but on a long drive today I found myself thinking about Favorites.  I began to come up with pairs of the Best of Everything, and I thought I’d share them.  I think it’s really important to count your blessings and to be very cognizant of what makes you happy.

Favorites, in pairs:

Songs:  And You And I (by Yes); Beethoven’s 6th, first movement

Prayers:  Shehecheyanu; Sh’ma

Movies:  Rain Man; Wizard of Oz

Clothing:  My red dress; my black suede cowboy boots

Days/Moments:  When Ned first said, “I love you;” the White House Dinner we attended

Colors:  pink, periwinkle (Delphinium) blue

Vacations:  The Atlantis with Ned; Cape Cod week when I was 13 (1976)

Men:  Ned, Dad

Women:  Laura, Mom

Young Men:  Nat, Max

Boyish Men:  Ben, Paul

Desserts:  fudge; melted M&Ms

Foods:  Baked ziti; pancakes

Books:  The Help; War and Peace

Jobs:  Oak Hills Golf Club Tennis Receptionist; English Prof

States:  Massachusetts, California

Cities:  New York, Jerusalem

That’s all, folks!

Monday, June 14, 2010

The Physics of Developmental Delay

Today is Nat’s final IEP.  I feel very teary.  Kind of scared.  Also excited, because I just love his team and I always love to hear about Nat’s progress.  There are always surprises from the teachers and house staff, things I didn’t know he could do, lovely interactions I hadn’t heard about.  They all adore Nat, and are moved and delighted by him.  It has (nearly) always been this way, in all of his 17 years of school.  There was one terrible painful year, a really bad fit, a nightmare placement, but shouldn’t I put that behind me by now?  Otherwise, a clean, bright school record.

Nat loves learning.  He loves the whole structure of school.  He hates learning a brand new thing because he doesn’t know exactly what he is supposed to do with it.  As soon as he figures it out — and it is usually with lightning speed — he whips his way through it.  Sometimes they have to keep adjusting his goals.  Other goals have never been met, but have always been just what they’re called:  goals.  We will have to bear it, that some goals are not going to be met.  At least not during the school years.

There ought to be institutes of higher learning for the cognitively impaired.  I would bet that the large majority of these folks picked up on the joy of learning a bit later in life than the “normal.”  Why do you think it’s called a Developmental Delay?  Delay implies that there was a pause before the expected progress kicked in.  What if someone (like Nat) discovered the joy of learning at 15 or 17?  I think this is the case with Nat.  He learned that he could trust this school; he learned that he got satisfaction out of the new task, he learned that he could learn more about this crazy world if he learned yet another task (a lot of “learn” in this sentence, as is necessary).

He even learned that communication + people = acquisition of new knowledge, which = accumulated experience, which = greater comfort.  The more he learned, the happier he has been.  The more he understood, the more he could understand.  The world of education was an ever-widening outward spiral. I see him as a small star at first, rotating outward, colliding with all the detritus of the universe, accumulating mass and energy, exploding, reforming, until now:  he is a sun.  Warm, radiant, bright, beautiful.  Ready.

So now, in about 17 months, this particular mode of learning will come to an end for Nat.  I suddenly feel that the goal for both Nat and me will be to find him more goals, to continue to move his target — not too far as to frustrate, but just far enough to intrigue him.

Saturday, June 12, 2010

Killing Two Birds With One Can of Tuna

“Can I have tuna today?”  asked Benj plaintively, knowing that he’d pretty much already reached his two-servings of mercury fish a week.

I decided to look the other way today.  “Can’t you make it yourself?”  I was tired from a long bike ride; besides, why can’t he make his own, at 12 years old?

Ben shuffled off, mumbling that he’d make it later, meaning, he’d wait until I was ready to make it.

Meanwhile, Nat had been running into the kitchen and then out again, telling me non-verbally that he, too, wanted to eat.  So I got a 2-bird killing idea:  have Nat make it.  Whatever part of it he does, it would help me out.  “Nat, can you make some tuna?”

Nat pivoted elegantly into the kitchen and pulled down a can.  His face was tense; he was just as happy to make his own lunch as Ben had been.  He half-heartedly looked in the wrong drawer for the can opener.  “Oh, it’s in the silverware drawer,” I said, without helping any further.  Let him ask for help, I thought.  That’s what I’m supposed to be doing these days:  not doing so much.

Nat got the can-opener and I asked, “Do you know how to use that?” immediately forgetting what I’m supposed to be doing, i.e., not doing.

“Ye-es,” he said, which usually means, “not really.”  But I watched him puncture the lid, and I pressed his hand down a little bit more, and then he did the rest.  “Can you drain it?”  I asked, my voice trailing off as I watched him drain it. He looked for a bowl.  “Oh, you can use one of those green bowls,” I said.  Shut up, Susan!  He got the bowl and dumped in the tuna.  “You can use a fork to get the rest out,” I said. At this point, I figured it was okay for me to keep instructing, because I wasn’t doing any of the work, and it seemed like all I was doing was giving him the tiniest nudge of help.

But I now restrained myself.  The mayonaise.  Hidden in the depths of the crowded, over-stacked refrigerator.  I have “bad refrigerator etiquette,” as my Dad calls it when you just place stuff haphazardly (tupperware container of spaghetti balanced on the top of the ketchup bottle) and slam the door shut hopefully. The next person gets the rude awakening of the ketchup falling on his foot.  So I watched Nat, wondering if this would go okay.  He made a tentative foray behind a few items, to no avail.  He stood back.  He went back in, and this time, was moving stuff around.

“Motor planning problems, my ass,” I muttered, remembering that asshole school intake, from when he was four, the horrible thing the school director did, hiding Nat’s shoes inside a complicated play structure, and giving him no instruction whatsoever.  Nat could see his shoes, and he cried and cried for about an hour; we were not allowed to help.  “You see, he has motor-planning issues,” the All-Knowing Autism Expert told us, “that’s why he cannot get to his shoes.”  But I, sad little Mommy, knew that Natty just didn’t know that he should go get his shoes.  Someone had taken them away.  These things happen to Nat.  But he wanted his shoes.  Now what?  Cry.

Such was young Nat’s predicament so often in those days.  Not knowing if he could, if he should, so he’d just be quiet and wait, wait, wait.  Needless to say, we did not send him to that mean little school.

Nat deftly pulled out the mayo and twisted the cap a few times.  He shook a few huge glops out and mixed it up.  Done.  “Wow, thanks, Nat.”

I plopped a little on a bulkie roll for Benj, and gave Nat the rest.  “Oh, thanks, Mom,” Ben said with relief.

“You can thank Nat,” I said.  Ben whispered a thanks that Nat never heard, so of course I, mediating little Mommy, shouted, “Excellent, Nat!  Thank you.  I love when you do things yourself!”

A lot of irony here, and a little mercury.

Thycling Thoughts

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.

Friday, June 11, 2010

It Just A-Noise Me

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.