Susan's Blog

Tuesday, July 27, 2010

Phone Call

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.

Monday, July 19, 2010

A Window to a Soul

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.

Sunday, July 18, 2010

Susie’s Summer Pie

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.


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.


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!


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.

The Korean “Peace”

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!

Making Peace with  Autism in Korean

Saturday, July 17, 2010

Something So Right

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.

Friday, July 16, 2010

Post Post

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