Susan Senator

I wish I knew, I wish I knew

What makes me me what makes you you.

-Cat Stevens

I’d thought myself too old in this regard.  So often I feel like I’m supposed to be a role model.  Beyond it all.  Well, not beyond it all, but wise and easily recovered from it all.  I’m the future, some people feel.  But I forget that I’m also the present.  And the past.  The usual state is that the waves of pain subside, it feels like an eternal low tide.  But when it rises, it has the strength of twenty years.  I fear the ocean.  I love the ocean.

There will be a flash of something, something I forgot to do, something I’ve lost.  A song, forgotten in my shuffle. It sends me back to you, my darling boy.  I can’t help it, please forgive me, I feel heartbroken today, because I just wish I could talk with you.  Really talk.  Hear your thoughts.  Have you want me to hear your thoughts. I wish I could make you less alone.  I wish I knew how you felt about life, how much you know.  I feel that I know, but just once, I want certainty.

There is no blame here, no one’s at fault.  That’s what makes it so hard; no one to be mad at.  I like to know why and who.  But I can’t.  I have to go by my heart, by the air, it slips through my fingers.  Strength is about having strong fingers.  Strong heart.  But how can a heart be strong and soft at the same time?  How can a person be so silent?  What happens to the life teeming in your brain?  Where does it go?

I want it to come out.  I want to hold it in my arms.  I want it to come to me.  I am tired.  You’re so alive.  Come to me.

It was past 11pm, so I was fast asleep.  Ned heard the screen door creak open, but then there was no other sound.  He waited for the sound of the key in lock, a long, drawn-out cranky conversation between old metal teeth and grouchy tumblers.  Nothing came.  He went downstairs, figuring it was Max, home from his girlfriend’s house, with no key.

He found Max out on the lawn, throwing things up at Ben’s window, which was lit up.  “I figured Ben was awake, because his light was on,” Max explained.

Ben was awake, but he had not gotten out of bed because, as he put it, “I heard the noises, but I just thought it was stuff breaking.”

I danced tonight; it had been about six weeks since I had done it last.  I was beginning to think I was done with it, until yesterday when I was invited to perform for an organization in town.  I was psyched about the invitation.  My response told me that I was not done with dancing at all, just coming back from a big break.  That was a relief, because I was feeling really sad about being done.  But it just had not seized me the way it always had before.  I didn’t want to force it.

So tonight it was there again and I went upstairs and changed; I put on the deep red fringed Turkish one, my most recent acquisition.  It fit better than ever, probably thanks to all the bike riding I’ve been doing.  I felt no pressure to have an intense workout like I used to; all I wanted was to perform, imagining that I was at my performance downtown.  I haven’t even said I’d do it; I have to see how I feel about it.

The dancing was fabulous.  I chose all old classics, because those are much more conducive to performance.  The new Egyptian pop stuff is more dance party music.  But George Abdo, Eddie Kochak, and Samy Farg all have that old world feel and they always have an interesting, definite finish, rather than a fade-away.  All my moves were coming back to me, and I felt relaxed and also energetic.  In fact, it seemed almost as if I were better than before, even though I’d had a 6-week break.

Which made me think about Nat and the way he comes back to things after long breaks.  It is so weird to think about his first forays into sports, and how disappointing that was.  Challenger T-Ball and Viking Soccer.  Nat was too spacey, and the coaches just didn’t get him.  They were more interested in the kids who were better at it.  I guess I can’t blame them, but then again I really believe that kids sports should be about teaching/learning first, and beating everyone else second.  Maybe what we have here is a mother who just doesn’t get sports.

When I think about it, our very first foray was when I took Baby Nat to that pool at the Y for the mother-tot swim class.  Where he just floated and stared at the ceiling, poor darling.  And me, poor darling:  I just wanted to cry over my odd little baby.  And now, look at him.  He’s a champion swimmer, a gold medalist.

I get Nat.  At least now I do.  I learned from those sports debacles that it was a matter of trying again in a year, and some other sport.  Some other coach, some other venue.  Not to get discouraged and chuck the whole thing, but to regroup and find a different group.

And the thing is, he comes back to his sports better than he was, each time.  It doesn’t seem to matter that there’s a break or a rest — for either of us.  Maybe that’s actually better:  to have a break, and not to have to think about it for a while.  Then, let it come to you, naturally.  A break is good.  Down time.  It’s just a little thing Nat taught me, but sometimes I’m just not paying attention.

The Pennsylvania Gazette, which is the University of Pennsylvania alumni magazine (Ned and I graduated in 1984), has just published a feature article on me, autism survival, and family love/life.  You can read it here.

Ain’t it just like a friend of mine,

To hit me from behind.

–JT

One of the best friends I’ve ever had is someone I met in childbirth class, while pregnant with Nat.  Merle was the second Southerner I’d met in my sheltered New England life, but I had never met anyone like her.  Merle had a lot of knowledge stored up, about babies, but also about family, health, people, religion, organizations; you name it, she had something to say that would make me think.  I didn’t always agree, but I did think.  It seemed as if an entire structure of World View — (sorry to geek out here, but I mean in the Schopenhauerian, Weltanshauung sense of world view, our inner, indestructible, and immutable perception and value system) —  had been built around her, like a library of good sense and information. Whether it was particular to her family culture or had to do more with growing up in a small town in South Carolina, or just how Merle is, she could always match what was happening to a reference in her mental stacks.

I was always surprised by her certainty.  I was never certain about anything.  And when our two babies came along (Quin and Nat), I was even less so.  I had read Leach and Brazelton, but still I knew nothing.  It was as if I were inventing motherhood.  Merle, on the other hand, had only read Spock, but she knew right away about things like allergies, thrush, possible ear infections, and subtle shifts in behavior.  Merle was the first one in my circle who mentioned a concern about Nat and how quiet and withdrawn he could be.  When we found Nat hiding in the bathroom from Quin one day when they were around two, Merle told me she was worried.  When I protested that Quin was just too noisy for him, and that our pediatrician was not concerned about all the other things about Nat, Merle’s response was, “Well, you are.”

She knew that I was worried, and didn’t make a big deal out of it, even though it was a very big deal.  Nat’s behavior, to her, fit right into an area of her wisdom, called, “The Doctor Needs to Do Something About This.”  No value judgment, just certainty.

I got angry at her.  She backed off, but she was unfazed.  All the while that I churned the idea in my head that we would no longer be friends because she just could not deal with her out-of-control kid who terrorized tiny Nat, and because of her cornball Southern Common Sense, Merle just eased off and continued to be my friend, just a little more quietly.

I don’t actually remember how she responded to the news of our diagnosis.  We just kept being friends.  I do remember telling her a lot about my own relationship with my parents, which was very strained, on and off, at the time, and that Merle would listen with furrowed brow, and always say, at the end, “Yes but they’re your family, and they love you, so…”  Another bottom line.  Infuriating, and yet, when you found yourself in Merle’s orbit, it was very easy to find a place and go with the flow.

I gave a talk the other day in North Carolina, for Autism Services of Mecklenberg County, and there I met another Southerner, Ann,  the organizer of my talk, who possessed a similar solid scaffold of wisdom.  Just having lunch with her, I was blown away by the way she could dip into her stores of experience/philosophy/knowledge. She told me about how her son, who has Asperger’s, was once asked by fellow students, “Are you a snob, or just a retard?”  because he did not talk to any of them.  His response was “neither.”  Ann told me that when she heard this, she told him how he had missed a teaching opportunity.  He could have explained Asperger’s to them, enlightened them about how it is difficult for him to converse the way they did.  She said (and I’m paraphrasing awkwardly here) “everyone gets one more chance, to be good.  You explain, inform, enlighten, and maybe they’ll be sorry, or next time they’ll think.  After that, if they do it again, they’re bad.”

No dithering around with bullying and teasing theories, no wailing about the lack of adults present, no throwing up of hands.  Ann could really think on her feet, and grab onto the teachable moment, while at the same time, treating her son as the responsible individual.  And in doing so, this is what he has become.  He just got back from a year in Americorps.

Ann seemed familiar to me while we sat there and ate and exchanged stories of our adult sons, even though we’d never met before Friday.  I felt an odd ease and comfort with her, that feeling that I was being challenged and embraced at the same time.  I realized at some point later that she reminded me of Merle.

Quin and Nat are all grown up, and I talked to Merle the other day for the first time in a while.  I don’t know why we lost touch.  She told me how Quin was probably going to take a gap year from college, and how she thought that was a good idea, give him a little more time to grow up.  She told me what her worries were, and what she would do about them.  She listened to mine.  My problems were not bigger or worse or anything, even though we have autism going on.  When I brought that time up recently, when she’d told me what was what about Nat, she merely shrugged and said something like, “Well, I just knew he was too quiet.”  Just like always, Merle knew what was what, and went on from there.  I could feel my place in the universe, talking with her like we used to.  Things fit softly together, and made inexplicable sense.  Surrounded by her solid walls, I found I could really enjoy the view.

This is the second day of battering winds and cold rain on my Cape Cod vacation.  You might find yourself saying, “Oh, that is really too bad!  Ugly rain on your vacation!  You have to be indoors and bored and trying not to eat to console yourself.”  Of course, you could also say, “Wow, you get to be on vacation in the most beautiful place on earth with your true love and ultra cute sons.”

Which is the truth?  It’s both.  How do I balance contentment with the human condition of dissatisfaction, and the drive to have the best/be the best?  Lately Ned and I have been really into Louis C.K. (the link I’ve given you is much more restrained than his usual stuff, but still funny).  The other day, Ned quoted from him, saying, “The key to being happy with your body is to want the body you have. In my case, you just have to want a shitty body.”  The thing is, unfortunately this is the truth.  Loving what you’re given is so much a part of happiness, yet it is one of the most challenging things to do.

It is also not what we are supposed to do — not entirely.  Because even as I try to curl up softly and contentedly with what I have, there is all that I still want, and that I am working toward.  My children are the best example of what is given, of what I have, but there is no way on earth that I’ll simply let them be exactly who/what they are.  They have to be pushed to try things and grow.   We say we love them for who they are, but we also love them for what they could become, if they push themselves.

I’ve always been trying to balance this dynamic, so that I am not pushing them to be something they’re not, thus giving them a bad message about themselves.  But — who they are is changeable, improvable!  So how do you do it right?   For example, over the years, I have learned that it is important not to view Nat’s autism as a defect, but rather as a collection of characteristics that are both him and not him.  This makes it all the more complicated, trying to get him to grow.  He’s like a big beautiful sunny meadow of flowers:  but which are the “real” flowers and which are the weeds? If you pull out too much, what will you have left?  If you completely replant, haven’t you changed the original essence?

I have heard virulent ABA-ists talk about stomping out all of the autistic behavior, in order to make the child fit in better.  Of course we want him to fit into the world, to find his place, and yet, at what cost?  Perhaps his self esteem will suffer, perhaps not.  The cost may be something more broad, like a vague pervasive unhappiness and feeling of discontent permeating the family atmosphere.

Sometimes I envy those autism parents who are just so sure of what is bad about their child, or fixable.  They have it all stacked up, solid and immutable.  They have a list in their heads of what is what.  I have never had that kind of certainty.  I have always seen the dreamy spacey qualities in Nat as both things to work on and things to let be.  I have sometimes (often) simply been in love with his autistic traits, such as his ability to sing the erratic movement of his wagon, as a little boy.  Or his odd verbal formulations that truly express the sentiment, far more than the “correct” usage:  “It’s a different, that’s okay.”  Or his soft self-talk, wispy whispers of things he needs to say, but also needs you not to hear.  How can I explain this to you, you who might say, “I have no right to complain to you because you have it so much tougher with that” that you have every right? I don’t know the depths and darkness of your misery, and you don’t truly know mine.

There is no way to compare one child to the next, one family to the next.  It is all about what it feels like.  It feels good to me to have this particular messy garden, where stuff dies one year and inexplicably grows the next.  Louis C.K. probably has it right:  he just loves his “shitty” body, rather than feeling miserable about the body he just can’t have.  The real truth, however, is that it is not a shitty body if it is alive and giving you joy.

This is what happens when a teacher is great.  A whole world opens up.  This is what Therese, Nat’s teacher and camp-aide-to-be, sent me:

Today I went to Nat’s House in the morning and I had one of the best conversations with Nat. It started with the probing questions from me about what we will be doing this weekend and next week and the quick affirmative responses from him; but after two or three turns he started giving me more details. He started giving me the details of what he would be doing or going during the day. Like when I asked him about Sunday, he said “you go to airport, you go to Colorado, you go to camp.”  The school staff at the house started to engage in the conversation and he switched his eye contact back and forth between all of us. And when someone asked him what he will do during the day at camp and he said “you wake up” then paused then said “go tubing.” Not all of his responses were complete sentences but still he gave us DETAIL! The conversation between the four of us lasted close to a minute and Nat was completely engaged! That just made me that much more excited about this trip!

Me, too. Here is a Tabblo of pics from Nat’s very first time in Extreme Sports Camp, in 2007:

Day Eight:  Back to Boston.  We left Aspen and headed to Snowmass to pick up Nat from his camp.  Each of the campers swung into view via a ropes course!  When Nat finally disembarked, he got a lot of cheers and hugs.  Fifteen hours later, we were home!
… See my Tabblo>

Rabbi, we’ve been waiting all our lives for the Messiah. Wouldn’t now be a good time for Him to come?

Rabbi: We’ll have to wait for him someplace else. Meanwhile, let’s start packing.

–from Fiddler on the Roof

I guess all families, all people really, must live with the unresolved.  I feel like sometimes I go around with the anxiety of the unresolved as if it were physical; I feel it right in my stomach.  It happens a lot when I think about Nat, and also Max and Ben, but maybe moreso with Nat.  Especially now that he’s not here for most of the week, and so a lot about Nat has to be taken on faith.  I’m not so good at having faith.

Sitting here on my living room couch, with creamy sunlight splashed across the frayed armchair nearby, I thought about the things that I had to get done in the rest of the week.  Any peace that the softness of the scene could have given just shattered as I realized that the number one thing going on is Nat going to camp on Sunday.

Why do we do this to ourselves every year?  This is the third time we are sending Nat away to this camp in Colorado, and it is always an anxiety-producing proposition for us, and by us I mean me, Ned, and Nat.  Even if all the details were squared away, such as the packing of sunblock and sturdy shoes for hiking, (and by the way, they’re not), this trip is one big nightmare of worry. Thankfully, we are going to get the gear honey website to ship last minute items directly to the camp and so, that’s a relief. We send him on a plane with a teacher who knows him well.  She has to get him through airport security, a plane ride, a plane change,  into a rental car from Paris and across a mountainous highway to the camp.  And then there’s camp itself.  Extreme sports camp!!!  She’s never been there and actually this is a new location for the camp, so neither has Nat.  Same set-up though, of one-to-one counselors during the day, and the teacher with Nat during the night.

I am not going to go into all the details here because that will only make my stomach feel worse.  The thing in my head right now, that forced me to open up and start writing is just that sinister undertow of Unresolved, pulling beneath the surface.  What do I mean by “unresolved?”  I mean all the stuff I have no answers to, never a definitive, tablets-from-God certainty.  Is he alright?  Is he going to be alright?  What does alright look like when you are fairly severely disabled?  From Day One, we all wish for a manual that will tell us these things.  We read book after book, and google autism until we’re googly-eyed.

We all want to know:  am I doing the right thing?  How about this?  How about now?  What if I stop, because I’m so tired?  Why did we commit to this path?

What have I forgotten?

Why do we have to be human and flawed, and so we just end up having to hope for the best?  What if we never get the best, but only the so-so?  Maybe it’s just that the thing about my life is that I’m doomed to uncertainty, and that happier days are ones where I’m more certain.  But I don’t think I’ll ever be Sure.  And so I’m sending him on this trip, feeling like it will probably be okay, probably great, but dammit, I just won’t know until he’s back.  Meanwhile, he has to keep leaping faith, because I fly by the seat of my pants.

The other day I had a pretty bad bike accident.  I was going really fast down a hill, on a street where I’ve ridden many times before.  There were no people around, no cars.  There was nothing to distract me, except my own thoughts.  I was thinking about colors.  I was feeling my power, and the glory of being alive.

I hit a curb and flipped to the right, landing on my right hand, shoulder, and knee.  My helmet and head were intact.  A kind woman living nearby helped me with hydrogen peroxide, water, bandaids, and a sit-down on her steps.  Ned picked me up in the car, and it was over.

Except that it wasn’t.  I became depressed for two days after that.  I still lived my life, functioned fine, but I was sad.  Even though I got right back on the bike the next day, it wasn’t fun.

It wasn’t fun because I was riding in the company of fear, and I was being very careful.  I was trying to prove to myself that I could still do it all, eyes only on the road, head cleared of all color.  I took another ride the next day, a brief one with my sister, her kids, and Benj, and it was slightly better, but I was still subdued and grayish.  But because Laura makes me laugh so much, I felt a lot better at the end of the day.

So, today I had enough time and I rode all the way back to where I’d fallen. The familiar tingling pain of pumping pedals up hills bloomed in my muscles.  Gradually I felt my body settle into my bike, with deep pleasure. I rode fast down the hill, just like the other day, and when I got there I spat on the ground.  While riding back home, I found myself singing and psyched, pushing the pedals very hard and fast.  I aimed for a low curb, and took it hard but in good control.  I swerved in and out, on purpose, delighting in the return of my mastery.

I thought about how it is with this kind of high joy, that there has to be a kind of recklessness, a forgetting, in order to fly like that.  Suddenly I thought about Nat, and my fears of going out in public with him, of being hurt by him, and lately, of him getting hurt — on a bike or anywhere else.  The more he moves outward into the world, the more fear I feel, right there next to my pride, my celebration, my elation.

I found myself wishing I could experience that crazy wild fun joy with Nat — with my boys; what would that be like?  Will I ever get to a point of utter blissful forgetfulness going out somewhere with Nat?  I think so.  It has already happened in tiny bursts, on bikes, in the waves, in my dreams.  It’s gotta start somewhere.  But, also, it occurs to me now that it may not be possible to, because they are my children, and I will never be reckless with them.  I have to settle for the watchful kind of happiness, always in the company of the fear phantom, because balancing motherhappiness is just not the same as balancing on a bike.

Yesterday we were up in New Hampshire visiting Ned’s dad and stepmom.  They have a new cat, almost a kitten, the black kind with the white markings.  His name is Scotty, and he is really friendly.  Still, that didn’t mean much to Nat.  As soon as he saw the cat, he backed away, saying, “Nooo.”  His strong and certain “No” is very striking.  Innocent and confident at the same time.  He hears over and over that these pets won’t hurt him, but it just doesn’t get in.  He tenses up and he struggles to wrench himself free, even when I am gently holding his hands telling him it’s okay.

As a little guy Nat didn’t really notice animals.  I remember taking him to farms, zoos, to animal movies:  nothing.  He knew what animals “said.”  He knew Floppy Bunny was a rabbit and that Fuzzy Minken was a minken (monkey? bear? lamb? we just don’t know, but Nat called him Fuzzy Minken and that was that.).

The fear of animals has nothing to do with his autism.  And I don’t think autism has anything to do with his stubbornly insistent fear in the face of all explanations and evidence that he should not be afraid.  I think what’s happened is that this is yet another awakening of Nat’s.  His animal switch went on.  He’s aware and he’s afraid.  He is aware of danger now; I can see it when he rides his bike, the way he swerves to the side to avoid cars.  But to get him to understand that most people’s pets are safe is a hard thing to do.

Max and Ben played a lot with Scotty, getting him to jump up and chase stuff.  Max really loves cats these days, I think because Hannah turned him onto them.  She has four.  They watch kitty videos together pretty often.  Anyway, Max was in love with little Scotty.  We all were, except for Nat.

At one point we were sitting in the living room watching something on tv, and Nat was in the armchair.  Max was standing next to Nat. I became aware that Scotty was moving a lot back and forth because Nat kept fidgeting.  I also became aware that Max had his hand right near Nat. and he would lay it right on Nat’s shoulder, saying, “It’s okay Nat,” every time Nat tried to leap up. Nat would settle right back in his chair as soon as Max’s hand went to his shoulder.  I’ve never seen Max and Nat interact like that, ever.  I have never seen Max being tender to Nat, and Nat responding.  It’s like the brother bond switch just got turned on — in both of them.

I’m up at 5am because I had a dream, though I can’t quite remember it.  I noticed the phone was flashing, as it does when there’s been a call.  I pressed the buttons to see who had called and I saw that Nat’s House was on there, at 12am.  What did that mean?  I called them, and an overnight staff person answered.  He told me that no one called and that everything was alright.

I was embarrassed, so I hung up.  I don’t know what this means.  Why would there be this mistake?

No reason, I guess.  But of course the thought flashed through my head that this was some sort of Sign.  My 5am brain was tormenting me with the “what if it were Nat calling to tell me something?”  And now, as the sky is starting to blue up, I realize that my brain is tired, there was a phone glitch.  But it occurs to me also there’s something here to acknowledge, something of a wish in there, because it would mean that Nat had reached out to tell me something, period.  I want him to be okay, happy, healthy.  But — there it is:  that old old ghost, reminding me that I may just want more than that.

Over the years, people have suggested art therapy as a possible way to get Nat to express himself.  Back then we were always looking for therapies that would get at Nat and help him.  We did years of music therapy (in addition to years of speech, language, sensory integration, and behavioral therapy.  We tried a little Floortime and we looked into auditory integrated training, as well as perhaps a week of The Diet.   Blah blah blah try try try, fail fail fail) but we never did try art therapy.  I hated when people suggested it to me the same way I hated it when people say that “autistic people respond well to visuals.”  It seemed to be one of those sweeping generalizations that had no bearing on who Nat was. I still get that feeling, like a balloon losing air, when people suggest things I should try for Nat.

Nat did not like art.  We’d put crayons in front of him and he’d scribble, filling every white space on the page with the one color he’d chosen.  To me, this felt hopeless, rote.  It did not seem like he was expressing himself, or if he was, what was he saying?  It was just painful for me at the time.  I guess this is because I was judging him by how I would do things:  if I had crayons, I’d draw something. A woman in a ballgown, a garden, an undersea scene.  I suppose I could have said that Nat was more abstract, but it felt like a thin assumption.  His scribbling was listless, phoned in.  I know when he likes something and when he doesn’t.  It just felt like art, for Nat, was not an avenue to pursue.

Today I drove out to Nat’s school with a pile of blue-colored tulle I’d bought at JoAnn Fabrics.  (I love JoAnn Fabrics because any craft project you want to do, they got aisles and aisles of the raw materials.  Walls and rows of every color, every texture.  Beads, baubles, brushes, paints, feathers, glitter.  It makes a gaudy girl like me want to sing.  Or sew.)

The tulle was for decorating the school gym for the prom.  They are having another prom, just like last year, for the upper school.  This year the theme is “Under the Sea.”  I immediately had an entire vision of what they should do:  swaths and swags of tulle, in blue, green, purple, waving from one end of the gym ceiling to the other, like the top of the ocean.  Tiny lights (plankton?  starfish?) to further delight.  I was laying the tulle out along the floor of the gym with the school’s Family Services person, Jessica, who also seems to be the go-to girl for just about everything there.  Jessica suggested I come with her to the art room to see some of the decorations the students have been working on.

The art room was a beautiful rainbow of sea-themed clutter:  seahorses standing up on their own somehow; a big stingray spread out on the table between Crystal, the art teacher, and Norah, a mom.  Crystal pointed me to Nat’s work — his class had also painted sea creatures on the school window. As I turned to look, I felt that same old soul deflation beginning.  But there, in very recognizable form, were two stingrays fluttering through a thickly painted ocean of sea life.  “He did it completely on his own,” Crystal said.  “He copied this picture,” and she handed me a picture of rays.  “I didn’t know he could paint,” I said — shouted, really, with my voice cracking and tears pushing behind my eyes — while they all looked at me sympathetically.  Norah, the other mom, said, “Yeah, they never show you at home what they can do.”

Just when you think God had closed the door on something, He opens up a window.

I baked a pie last night for my dear college friend Ray (who was an usher in our wedding!) and his beautiful family, visiting all the way from D.C.  I mentioned it on Facebook.  Then, a friend, upcoming author, and hurricane of an autism mom suggested I blog my recipe. She is going to adapt the recipe to a GFCF (gluten-free, casein-free) diet.  Kim and I don’t agree on many things autism, but we agree on many other things, one of which is the beauty and necessity of pie in one’s life.
My recipe is bastardized from the great James McNair’s Pie Cookbook, but done on my terms.  By that I mean that you should view your homebaked pie as you should view your life:  a rare and welcome thing, and it doesn’t really matter how imperfect it is, because most people won’t notice.  You should all be too busy enjoying it.

Crust:

2 cups flour

1 cup cornmeal

2 sticks butter (1/2 cup of some kind of fat)

2 heaping teaspoons sugar

a little bit of salt– maybe a teaspoon?

1/2 to 3/4 cup ice water — enough to make the dough just moist enough to work with.

Mix it all up with your fingers until you can form two fist-sized balls of yellow-colored dough.  Chill one of the balls in the fridge; take the other one and press it right into the pie plate.  Press it flat and even, up the sides, smooth and as thin as you possibly can.  You’re doing this instead of rolling it out, which I hate to do.  Why bother?  It is just as good pressed right into the pie pan.

Prebake this for 15 mins at 400.  About halfway through this time, prick the bottom (the pie’s, that is) with a fork.  After you take it out, let it cool at least 15 mins.

Filling:

2 1/2 pints of awesome in-season blueberries (if you can’t get ’em, don’t make this pie)

3 big nectarines or peaches, really ripe, peeled and sectioned into thumb-size slabs

Juice of half a lemon, and the zest from its peel (maybe a teaspoon or two?)

1 cup sugar

1/2 tsp nutmeg, 1/2 tsp cinnamon

2 small handfuls of flour, to get it to that gluey consistency of pie filling

Combine and make the pie:

Once the fruit mixture is piled into the pre-cooked shell, get out the chilled other ball of dough and roll it out on something it won’t stick to.  I use a marble rolling pin because it is less sticky than wood.  Use flour sparingly sprinkled on the rolling pin and the rolling board, to help ease the dough along.  Roll it into a circle that looks wider than the pie itself.  By now this should be pretty thin, like 1/8 of an inch, something crazy like that.  Just look at it and decide whether it is thin enough that you’d want to eat it, that’s how you know.  The trick, however, is making sure you can peel it up off the rolling surface…  hopefully you chilled it enough and used enough flour for sprinkling.  Don’t worry if you mush it up, though; pie crust is very malleable when uncooked and very forgiving.  Just moisten your fingers to mold it into the shape you need.

Cut finger-wide strips down the dough disc and lay them out across the pie, weaving a lattice top.

Or, just dump the whole circle across the pie and trim the edges, for a covered pie.  Soften down the edges with your thumbs to give it that curvy pie-ish edge.  Take a knife and cut notches in an “X” shape in the center because it lets air out and looks like a cartoon-perfect pie!

Bake:

Put a baking sheet underneath your pie because mine always runs over onto the oven, and makes an unfortunate pie-flavored smoke later on at Thanksgiving.  Bake at 425 for 20 mins, then cover lightly with a piece of foil to keep crust on top from getting too dark; turn down the oven to 350 and cook for 30 minutes more, checking now and than that it’s not getting overdone.  Also, check that it looks like a pie before you take it out, though — by that I mean the crust should be golden brown and the fruit mixture should be bubbly.

My first book, Making Peace with Autism is now available in Korean: 자폐아 가정의 좌충우돌 성장 이야기.  Not sure how that family of five down there adds up to ours, particularly the dad with the tie(!) but I believe the spirit of the book is all there.  I even noticed, in the middle of all the Korean, the English words “Floppy Bunny” on one of the pages!

You got the cool water

when the fever runs high.

–Paul Simon

In the book I’m reading the character Nana says, “All my life it took me two tries to get anything right. And all of a sudden I’m old.” But she wasn’t sad, because this made it all the sweeter.  I feel that this must be one of the themes running through my life.  When I was coming back from my honeymoon, for instance, I turned to Ned, a propos to nothing, and said, “I don’t think I want to be married.”  I really felt this way, coming back from two weeks in Italy.  I was terrified.  It may have all been about anticipating the roaches that I suspected were all over our new apartment.  It may have been the foreign sturdiness of the word, “wife.”  It may have been my fears about starting grad school soon.  But there it was.  Into my heart/head and out of my mouth.

Ned is not one of those people like me who needs to be wrong a few times to understand what right is; he is much clearer and steadier.  Ned’s words and thoughts are, to me, like a deep underground mountain spring:  not easily visible, but clean and bright when it surfaces.  So Ned knew, he just knew, that I was being me even though I did not.  He did not take my statement seriously — well, he did, in that he listened and respected my feelings and doubts — but he dipped into his deep well of knowledge, his feelings about me, and he did just the right thing.  He did nothing.  The feeling passed, and so did our plane ride.  I’d like to say that this was the last time I ever had doubts about my married and grown-up self, but it was not.  And all through these ugly periods, Ned has stood by me, while I make my damned mistakes, keeping me from drowning.  Because that is how I get my knowledge.  My certainty comes from fucking up numerous times.  Not that Ned doesn’t make mistakes; it’s just that he learns about life differently than I do.

The mother role was no less difficult for me.  After we brought Baby Nat home from the hospital, I remember thinking, “Now what?”  The pregnancy had had all of its drama of anticipation, the birth even more so, but now here I was with this little guy and long days stretched ahead of me.  And this little guy did not act the way I expected him to.  “Something’s wrong,” I said to Ned.  “It feels like he doesn’t need me or something.”

“What can you expect a baby to need from you?”  Ned asked logically.  And there you have it, the polar difference between us.  I voice the dangerous rumblings in the earth and he stays safe in his pool.  The beauty of our relationship is that we don’t stay apart in those places.  We mix it up, he gets dirty, I get clean.  The truth about Nat was somewhere in between.  There was something different about him, even as an infant.  Autism.  But it’s taken me so many times to understand that this difference was not something wrong.

I just wanted to post the oped I wrote for last Saturday’s Washington Post.

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.

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!

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.

“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.