Susan's Blog

Monday, February 27, 2006

7 Year Twitch

Is there anything more adorable than 7-year-old mouth? Benj lost a front top tooth and I can’t stop looking at him and smiling. Why, oh why, can’t you just kiss your little boy as much as you damn well want to? Why does God make them so cute and then so twitchy about kissing their mommies? So unfair…

Then, last night, he got all nervous that the Tooth Fairy (which he once spelled “Toth Fairy”) might not be able to get to the tooth under his pillow because his head was heavy. I reassured him because I know her very well.

When morning came, I was probably as excited as Benj to see what she had brought. But he said, “All that was there is the old dollar on my dresser from last time.” I knew he meant the last tooth that had come out (bottom, also cute but not as cute); he had left the dollar there all that time! Money — who needs it? Not Benj!

Anyway, when he said that there was nothing there, I said, “Yes there is, I — ” and I caught myself just in time. So I said, “Yes there is, I know it must be there. Let’s go look.” Sure enough, it had gotten tossed among the covers. I blamed it on his bear, Bluebeary.

Ben was thrilled with his dollar, and I stole a kiss.

Friday, February 24, 2006

The Lady in Red?

Opinions, please!

Can I wear this red dress to my sister-in-law’s June wedding? Do people think red is a problem? I love it!! My husband’s stepmother says no; my husband says yes! Do the old rules still apply?

I also have a fabulous black one (sleeveless, halter neck, A-line, ruffled hem). What do people think about black? It is a noon wedding, on the water.

J Mac’s Slam Dunk

Hooray for Jason McElwain! Imagine, being benched for an entire season, knowing you could play as good — if not better — than the rest of the kids. Then, surprise, surprise, you go on to sink 6 3-point shots at the end of the game. The very last game of your high school career. You go, Dude!

Why do you suppose J Mac was benched? Was it that he was autistic? Did some idiotic school administrator make this decision? Do you think???? I guess I didn’t realize that such idiocy was still legal in this country, but how naive am I? How did it slip past everyone that this kid was such a ringer?

My own Natty is the only one of my three sons interested in any sports. As I say at my talks, at least I have one normal boy! He is playing basketball with the Special Olympics and though he is no J Mac, he loves the game. He loves to throw the ball at other teammates’ heads; he loves to run in the wrong direction. It doesn’t matter. He is a quick stringbean of a boy and he is getting the chance to prove his mettle. Too bad it took so much longer for Jason McElwain, but better late than never!

J Mac, my new hero! A role model for Nat!

Thursday, February 23, 2006

The IEP and Dumbo

Second Quarter Summary:
Achieved: Outbursts, Follow Directions, Short Passage, Sightwords, Safety Skills, Task Completion, Vocational Checklist, Academic Checklist, Initiate Interactions, Respond to Questions, Money ID, Filing, Vending Machine, Typing, and Gym.
Progressing: Complete Sentences, Conversation, Intelligibility, Math, Answering Phone, Placing a Call, and E-Mail.
Not Progressing: Vocational Tasks, Meal Prep.

Language Arts/Reading: (Achieved)
“Nat has reading skills at the beginning first grade level…Nat currently reads a short reading passage out of a level-appropriate book….Nat currently reads directions on a worksheet and completes the appropriate tasks…Nat currently identifies sightwords that he would find in recipes in a cookbook.”

Communication: (Achieved)
“Nat is a very quiet student and will only have a conversation when spoken to. He needs to choose a topic that he would like to discuss and initiate a conversation with another person.”

Math: (Achieved)
“Nat has a variety of math skills…He has learned to complete simple subtraction, addition, multiplication, and division worksheets using a calculator…He currently follows the Touch Math Curriculum where he is learning to add and subtract without the use of the calculator.”

As I read through this Quarterly Report of Nat’s IEP, a whole range of emotions tumbled through me. First, I had my oldest feelings, a welling-up kind of sadness, where I said quietly to Ned, “Poor Natty.”

Ned looked up from his computer, “Huh?”

I said, “His brain is so fried.”

Ned did not seem to hear, and I did not persist.

The television buzzed and flashed in the background. I kept reading. It wasn’t long before my feelings morphed into something quite different. The more specific description that I absorbed about how Nat spends his school days and all the tasks he is speeding through, the more the sadness gave way to a lump in my throat: pride. “Wow,” I said.

Ned looked up. “Huh?”

I said, “He is doing so much!” As I continued to read, I felt energy pulsing through me and a strong desire to call his teachers and shout my praise. Soon I was flooded with a sense of wellbeing and excitement. Who knew what Nat could be capable of? The sky’s the limit! I put the sheaf of papers down and stretched out on the couch happily and watched the stupid T.V.

A bit later, Ned put his computer away and sighed.

“Huh?” I said.

“I just wish Natty weren’t so closed up,” he said.

I thought about it, and wondered what to say. In some ways, Nat is more closed up than he has ever been. It is very hard to get him to initiate with us and tell us even the most basic thing, like asking for the salt. He’ll just stare at his dinner for the longest time without saying a word, without eating. “Yeah, I know,” I said.

But I also thought about this afternoon, sitting with Nat while he watched Dumbo. During “Baby Mine,” where Dumbo is visiting his jailed mother, I, of course, started to cry. Nat looked at me in alarm; he hates it when I cry. I said, “Dumbo’s mommy loves him. He’s her baby.”
Nat said, “Yes.”
I said, “Who is Mommy’s baby?”
Nat said, “Nat.”
I jumped up and hugged and kissed him.

Conversation goal achieved.

I looked at Ned, whose face was very tight. His eyes looked wide and a little blurry, as if tears were close. Then I remembered that he had woken up very early this morning. “You should go to sleep,” I said. “And read this thing soon. You’ll get a better idea of how Nat is really doing most of his day.”

We went to sleep. I think that rest will restore Ned’s natural optimism, and I hope that reading the IEP Quarterly Report will take care of the rest. If not, I’ll have Ned watch Dumbo with Nat.

Wednesday, February 22, 2006

More Joy

When it’s good, it’s good…

1) A f***ing great husband
2) Realizing that even if my intense new friend ain’t always so intense, I will survive
3) Treadmill + Ipod filled with Dane Cook, Eric Clapton, and Bob Dylan
4) Being at my ideal weight (because of #3)
5) Driving around in the Amazon/Das Boot/new Volvo XC90 with Derek and the Dominos blasting in the best stereo I have ever owned
6) Hair just the right length/color at last
7) Boys gone for the entire day
8) Shopping (the good kind) and lunch plans (although no $$, see #5)
9) At least one interested editor
10) Playing guitars last Saturday with my sister
11) Making up

The Light Has Changed

I swear to God, it may still be February, but I looked out this morning and the light was different. More yellow. I looked up to check, and the sky was a richer, thicker blue. A spring sky. Spring light. Also, the first sound I heard this morning was a slower bird cry, a different bird cry than the winter birds. But it is the different light that convinces me. There is always a moment towards the end of winter when I just know there has been that magical shift into spring. Even if we get more cold, more snow, the light has changed. Its back is broken, winter is now a limping, crawling beast, clawing at us all but nearly dead, no longer a threat.

Paging Nyemade Washington

For the most part, I have been able either to reconnect or stay in touch with all of my kids’ teachers (the ones with whom I want to stay in touch, that is!). It astounds me how many good ones all three boys have had in the thirteen + years I have been involved in their education. Max and Ben, who go to the neighborhood school in a town that is renowned for its school system, have had all good teachers. I am not exaggerating. Their principal is retiring this year and that will be a huge loss for our town. I, whom you cannot hold back when it comes to my kids and pushing for their rights, have never had to do more than request this kid or that kid in Max and Ben’s classes. I have always been able to have faith that the teacher would be fine, and they always have been. Sometimes they have had the same teacher (Ben, several years later) and this is an added plus because I know her so well by then and it is like having another friend.

Nat, who started school at three, has had mostly wonderful teachers, and I do not use that word lightly. There have been a few total losers, too, whom I dearly hope have since left the profession. Since this is my very own bitching forum, let me say once again that there is an entire collaborative of people in west of my town for whom I wish “A Yir Of Dur” (don’t know how to spell it, it is Yiddish for “A curse on all their heads,” my late maternal grandmother’s favorite phrase for the Tsar, the cossacks, and all the many others who get their kicks preying on Jews). Well, Nat’s collaborative did not prey on Jews, but they sure as hell did not understand a little autistic boy near and dear to my heart. (See chapter 8, Hitting Bottom). These were the same folks who told me that they would not put any additional support in for Nat when a behavioral specialist proved to them that this is all it would take, and for a short time, to get Nat back on track. These were the same folks that said he could not have any behaviors if he wanted to stay there. These were the people who suspended and ultimately expelled Nat from their “special education” program because he had — gasp — special needs. One day I will have the nerve to say their names in public. Everything I have said is true; there’s even a formal complaint at the state Department of Education Program Quality Assurance that describes this in full. What I got out of it: The DOE made these folks relearn correct team meeting procedures. A slap on the wrist, you might say. Move on, you might say. Ah but you are talking to a person with (mild, under control) OCD. You are talking about a person who models herself after Mrs. Jumbo, Dumbo’s mom. Did Mrs. Jumbo move on when those kids made fun of Dumbo’s ears? No, she went to elephant jail for her son’s rights. Moving on is not my specialty.

But I digress. I will always digress that way, however, because this was a wound that cannot heal. When someone messes with your kid, that is the way it is. A curse on all their heads.

Someone who did not mess with my kid, but rather, reached out and helped him in such a way that I could actually see it, was Nyemade Washington. She was a tall, strong, no-nonsense kind of woman, the kind that Nat is always attracted to (wonder why that would be?) When we visited her classroom with little four-year-old Nat, she demonstrated the behavioral approach to educating kids with autism.

She stood five feet or so away from Nat and said, “Nat, come here.”
He stood there, not doing anything, as he had always done.
She came over to him and gently but bodily moved him to where she had been. “This is ‘come here.'” She said.
She went back to where she’d been, and put him back to where he’d been. He was very alert now.
“Nat, come here.”
Nat went right over to her.

We had never seen him comply with a command before. We had never experienced him learning the meaning of words so quickly. We had never seen another person connect to him so easily. So gently. Yet it was also appealing, seeing this literally hands-on approach to teaching. It made so much sense to me, that to connect you would need to touch, to show. And clearly, she was not a cruel person. I could feel that she would never be harsh with him; she was centered and inwardly strong as well as outwardly. This was the right person to take my boy and teach him things about the world. Around six months later, he began school there.

Nyemade lasted through that year and then went on to get her PhD. She is probably running some fabulous school for the autistic somewhere by now. I wish that I could reconnect with her and tell her how wonderful she was, show her Nat and how he’s grown, how we’ve all grown. To thank her for being one of the most important people in our lives: a great teacher for my child. This is the best way I know to do that.

Tuesday, February 21, 2006

Is Autism the New Gay?

I came across an excellent blog and post today, courtesy of my ever-industrious, web-surfing husband Ned. “This Mom” talks about a list she found, of all kinds of famous people who had/have Asperger’s. As I scrolled down and saw the names, some of whom did not surprise me, like Einstein and Ludwig Van Beethoven, my all-time favorite classical composer (for his Archduke Trio, his Piano and Cello Sonata op. 69, for the Pastorale, and for the second movement of the 7th Symphony). Anyway, also listed were Woody Allen and Keanu Reeves!

Come on. I will grant you Einstein. I will grant you my Beethoven, I studied him in college, I know about the whole “Immortal Beloved” thing and his difficulties relating to people, his mood swings, his savant-like skills (he composed when he was deaf??!!). But Woody Allen and Keanu Reeves? Here are my questions: 1) Why Woody and Keanu? 2) What evidence is there?
3) Who diagnosed them?

But the bigger question here is, what is going on in our society that is making autism so much the catch-all problem, the designer diagnosis of the decade? And don’t tell me that Woody and Keanu had too many vaccines! [JOKING]

Seriously, this list reminds me of that list that circulated not too recently, outing all the supposed gays in history. Or Adam Sandler’s excellent, funny Chanukah song, which outs Jews. This Mom’s newest list illustrates that autism has made it officially to being A Trend. I used to wish for this, years ago, when I felt all alone with our diagnosis and no information, no good way to help my Natty. I remember envying the AIDS Action amalgam, with their ubiquitous red ribbons, the breast cancer pink people, wanting so badly for their to be some recognition for what I was going through (but when the puzzle piece ribbon finally made its debut, I have to admit I cringed, though, purely from an aesthetics perspective: the glaring primary colors, the canary yellow next to the royal blue and the fire engine red, made me sick. I hate those colors! If you look, you will see nary a primary puzzle ribbon on my site; only one puzzle piece, in Restoration Hardware green).

Now autism has its recognition. And it’s almost too much. I hear about some people who are “on the spectrum” and I think, “yeah, me too.” Some of them simply are not! Like those who “de-auticize” upon trying a new diet (this is my friend NancyBea’s brilliant word), a new this, a new that. It is kind of a mystery as to why some lose their diagnoses. Could it be that many are misdiagnosed because autism is the new ADHD? Could it be that there are many different disorders that present as autism when the kid is 18 months old, but clearly become what they are (something else) as the child develops? Could it be that some children develop differently, end of story? I am not saying that these people have no issues; I am saying that perhaps they do not have autism. Or perhaps autism should not be lumped in with Asperger’s? Just a thought.

The problem with too many people on the autism spectrum? It draws away resources — financial and yes, perhaps even compassion — from those who truly are. I’d like there to be infinite money and love in the world to encompass my Natty, Woody, and Keanu, embracing them in their struggles, but there just is not. And I don’t want Nat to get less of anything because Woody and Keanu have sopped it all up for themselves, only for people to then look at them and say, “Autism/Asperger’s? Big deal!” It is a big deal. My guy struggles daily and will always struggle just to survive in this world. He needs all the help he can get. Woody and Keanu? Maybe they need help but it’s a different animal altogether.

There needs to be new definitions, new words for what these other people “have.” Or maybe we can go back to some of the old words. The polite, respectful ones, that is.

Monday, February 20, 2006

To Need or Not to Need

Excuse the teenage-style angst, but I have been wondering lately about what to do with feeling needy. What do others do? It seems to be true that nobody loves you when you’re down and out. I find this to be incredibly sad. But then I think about those whom I like best to hang with, and most often I describe those people as “fun.” I don’t look for people who are really needy; and yet if one of my dearest friends were in deep need, I would leap to their side.

But if it happened too frequently? Would I still be there for them? Hmmm…

So why should I expect others to find it appealing in me when I am vulnerable?

Because that is when I need people the most!

I am quite willing to be needed by my children; in fact, I relish it when they come to me for something. It is pretty unusual because my kids are all very self-sufficient in their own ways. Nat will not/cannot(?) tell me what he needs, for the most part. I have to guess and guess. Max keeps it to himself also, and only tells me when he is already pretty upset. The same goes for Ben: he goes from content to angry in two seconds flat. He chooses anger (well, it probably does not feel like a choice to him but a reflex) because he is threatened by other, more vulnerable feelings.

When Ned needs me, he also does not tell me. I am supposed to hear it, or feel it, in a particular type of silence and his quiet words. I am supposed to put my needs aside and pull out of him whatever it is that is dragging him down. Often he does not know; he merely needs to talk about it, slowly, and quietly, until he has figured it out. And that takes a lot of patience for me — and I am not so good at patience.

My neediness is messy and ugly. It just kind of spills out of me, usually onto Ned, unless he is not here. Then I have to try to find an appropriate outlet. But there are few people whom I can trust with my roiling neediness when it is there. Why would I want people to see me in that state? But it is then that I really need someone, so I take the risk and look for someone who can handle it, who will cradle my fragile moment in just the right way. But who really can perform such a task for someone else? There are few I can trust and there are fewer interested, because maybe it scares them, or is a turn-off. There is nothing worse than offering your most real self to someone and then having it misunderstood — or rejected.

When I find a way to let flow the stuff that’s welling up, and maybe smear it onto some paper or a computer screen, I can eventually float back into a normal, comfortable place. Lately I have been learning how to do that for myself. I am surprised and delighted when I can, when I find that writing or thinking or exercising has smoothed me out again. Then I don’t need anyone to do it for me. Then, I can turn outwards once more, to friends and family, show the beautiful, shining side, and lo and behold, everyone flocks back, because I am strong and whole again — or so they think.

But I’ve just shown you: can you handle it?

Thursday, February 16, 2006

Coming to My Senses

I was standing at the sink waiting for the coffee to finish brewing. As soon as I heard that sucking sound, indicating that it was ready, I thought of my father saying, “That’s a good sound,” because of how he loves coffee. And then I knew I wanted to write about favorite sounds, smells, sights, touches, and tastes.

1) Favorite sounds:
the sucking and burbling of coffee finishing
the straining, desperate crescendo of a newborn crying
teenage boy’s voice cracking
the heaviness of male voices
Nat’s quiet silly talk
Max’s sudden high, giddy laughter

2) Favorite smells:
brown, earthy morning coffee
rusty, sweet slightly wet garden soil
warm, yeasty loved one’s skin
the surprise of a hot rush of cotton-candy apple blossoms
sickly-sweet milky baby breath
baby foot

3) Favorite sights:
green vulva of daffodil shoots
sky blue of delphiniums
flipping, shining hair
pale green beach grass in brown-blue ocean water
squooshy baby thighs
eyes with crinkles at the sides
silver in men’s hair
Ben’s mouth and nose
Ned’s beard
frothy bridal white tulle
just the right pink lipstick on my mouth

4) Favorite touches:
fingers in my hair
kissing on the lips
downy child’s face
baby’s chunky foot
coolness of grass
my hands in pie dough
cold water in a parched throat

5) Favorite tastes:
coated mouthful of melted chocolate
salty, crispy melted cheese stuck on a pan
hot crusty french bread and butter
tangy, sticky blueberry pie filling
loved one’s skin

Tuesday, February 14, 2006

The Bread and Chocolate Of Parenting

I have been uncharacteristically busy this year because of the book and I have become more conscious of my parenting. I now think of my parenting styles/moods in two ways: maintenance mode and connection mode. Bread and chocolate.

Maintenance mode is what it sounds like: it is all the basic stuff you’ve got to do for your kids. In my case, maintenance mode is meal-making, school shuttling, activity shlepping, playdate-finagling, homework checking, that sort of thing. Being there, in the house, on call, for any of their needs and for general conversation, nothing pithy. Bandaids, kisses, and generally providing them with a soft, omnipresent backdrop of comfort for their lives.

Maintenance mode may sound exhausting, but it is actually easy for me (other than the meals) because although as I have said I am no hausfrau (do ye thinks this lady doth protest too much? Maybe I am just a bit of a hausfrau — I do own four bathrobes, after all –) I am around the house and I naturally and unconsciously go around mutchering (as my mother would say. Not sure if “mutcher” is a Yiddish word or a word Mom made up, but it means to fiddle with a lot, too much, perhaps.) I keep a running social calendar both in my head and in my Palm Pilot, (which I have named “Pontius” because it allows me to wash my hands of scheduling responsibility) so keeping up with my boys’ lives is a fairly mundane task. Maintenance mode is everyday parenting.

Then there is connection mode. Ahh, the Promised Land of parenting. Connection mode is what I aspire to, but rarely reach. I have written before about the moments I have been able to connect with Nat. Connection mode is the same for all three of my sons. It requires a complete submersion in the moment, a real letting-go of the concerns and demands that press in on me — ironically, a letting go of maintenance mode. Therein lies the rub. Maintenance is tantamount to getting the day’s work done. It is the bread-and-butter of parenting. But man (and children) cannot exist on bread alone. So connection mode is like the vegan friendly drinkable cocoa powders of parenting. I know that sounds silly, but I like the hot chocolate analogy. It is the moment I leave thought behind and just drop down into the warm, sticky, sweet universe of busy boys. I sometimes wonder if , being a girl myself (or a former girl), I’d had girls, would it be just a little easier or natural to fall into connection? I don’t mean doll play or dress-up. I mean floating into their orbit, the place where they are being themselves so thoroughly and so defenselessly and yet they unconsciously let you in.

What does it take, to get to connection more frequently? Perhaps it is best left as it is, as it comes, the unconscious, purely being; the surprise of the unplanned. All the more satisfying when it occurs, and you realize it just as it is over, with a delighted sigh, that you found it today.

Sunday, February 12, 2006

Idiot Wind

No, this is not a post about the President’s State of the Union Address or strange false alarm in Los Angeles, his denial of being tied to Jack Abramoff, or his godawful budget proposal. It could be, but it is not.

This is about nothing. My own Idiot Wind. The wintry weather, which I hate, has inspired a blank, cold breeze blowing around in my head. I’ve run out of things to do with myself, I feel stuck indoors and stuck in time.

Idiot Wind is one of my alltime favorite Bob Dylan songs, a paean of pain about a love whom he now hates (apparently his wife of eight years, Sara). I’m been playing it on my guitar quite a bit, having found a site that gives you the lyrics and the chords to just about any song you want.

Max feels the way I do about the weather. If he’s not going to miss school because of it, he’d rather not have the snow. He went to bed in dread of the shoveling last night; what can I do with such a kid? 6’2″, strong as a throroughbred, no plans today, but going to sleep worried that he’ll have to shovel in the morning. Oy. “We’ll all shovel, Maxie,” I said, trying to be reassuring.

I woke up at 4:30 a.m. to see what we’d gotten. The light coming from the Palladian window at the top of the staircase was pink, which told me all I needed to know. Yes, indeed, it was snowing. I peered outside with sleep-weakened eyes and assessed the depth. A few inches. Max would have nothing to worry about. We got our snowstorm, as promised, but it is no wrath-of-God blizzard like they were all predicting. Talk about an idiot wind: the weather people on all the newsstations make such a big deal out of these things. It looks like a few inches, but it is incredibly blowy, and still coming down, so it looks like we’ll be shoveling more than once.

For me, idiot wind is far more literal than Bob Dylan intended it: it is the stupid weather, pure and simple, that sabotages my plans and eats away at Max’s equanimity and makes us all stir crazy. It is the slight feeling of dread I have the eve of a snowfall, that we might lose power, or get three feet as we have before, or be out of some important food item, or just be really, really bored.

I am waiting for the spring already. And of course Dylan, in Idiot Wind, provides the perfect, absolutely poignant line about waiting:

I waited for you on the running boards, by the cypress trees
while the springtime turned — slowly into autumn.

That is a long, bitter wait. Imagine losing your springtime to autumn waiting for someone who has let you down. What could be worse? Here’s my version:

I am waiting for spring, feeling really bored, watching naked trees
while the winter turns — slowly into springtime.

Yeah. That is my Idiot Wind; the stupid parodies I make up while I wait for my day to unfold, the light thoughts that float around in my head, adding up to nothing, but amuse me nonetheless.

Friday, February 10, 2006

Island in My Storm

6 p.m. Nat sat dead center on the white living room couch, knees to chest, staring ahead of him. So peaceful. I was not feeling peaceful, I was in a lot of turmoil. Not a good day for me. I have a lot of trouble transitioning to the weekends, with all of the unstructured downtime and everyone around when I’m used to being by myself. A lot of stuff has been going on in my head and heart lately and I was feeling tossed by my emotional discomfiture.

So there was Nat, an island of quiet. Demanding nothing. Soaking up the early evening hour. As usual. I stood behind him and knelt over him, my hair spilling into his face. I kissed the top of his head. He smelled like oily skin and strawberry shampoo.

Then he surprised me: he reached up and wrapped my hair around his hands, very gently, and pulled it to his nose, breathing deeply. Breathing me in.

“Natty, do you like that? You like my hair like that, in your face?”
“Yes,” he said, a big grin stretching across his face.
“I didn’t know, Honey.” I felt a quick stab of pain as I realized that here was something easy I could have been doing with him for all this time, some happy thing I could have given to him so easily had I known. Had I tried sooner.

I sighed, and looked at his long fingers, clutching at my hair so gently but also so definitely. He wanted me. He still loved me, I was still Mommy. The wonder of it spread through me, soothing my heart.

We just sat there like that for a few long moments, as his soft silence wrapped itself around me, and I was content.

Thursday, February 9, 2006

Disability Baggage Check

I was asked to blurb a great book that is coming out in the U.S. soon, A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. It is a thematic collection of essays from parents of kids with disabilities. Some were moving, some were funny, some were informative. One of the most striking essays was written by a mother of a child with Down Syndrome, who was told by the doctor, “I’m sorry to have to ruin your day, but…” when the child was just born.

This sentence has stayed with me ever since. In some ways, all of us who have children with disabilities have been given that kind of message somewhere along the line. It made me think, however: how much worse does a message like that make things? And, if we are being handed this label describing one aspect of our child at birth or upon evaluation, wouldn’t it be fair to be handed a similar list of issues about all of our children?

I know that is a ridiculous thought, but bear with me. That mom had her day saddened by learning something about her child that she didn’t know; by learning that her child was going to have to struggle, and how; but also, by learning that many in society (including their doctor) would view her child in a negative light.

The first two items are hard enough to deal with: dashed expectations and hardship, maybe physical, maybe mental, or both. But why add to that the baggage of an outsider’s personal issues with disability?

What the doc could have said, instead:

Your child — among her many other wonderful traits, such as a lovely smile, smooth skin, chubby legs, good reflexes — has Down Syndrome, which means that she may have some trouble with X, Y, or Z. We can cover all that at her [whatever] checkup. She would do best with such and such educational approach, and Early Intervention — here’s the phone # of a good practioner, by the way. With the right education and healthcare, she should be able to lead a happy life. Who knows what she may accomplish? But no need to worry about any of that now, right now you need to get some rest and then play with your new, delicious baby.

Or, if doctors and the rest of the world must make us feel awful on top of delivering the specific information necessary for helping a child, then they should be required to tell us all the goods on all of our children. Here, for example, is what my doctor might have said about me when I was born:

I am sorry to ruin your day. Susan is not an easy person to know. She is rarely content. Her nose is kind of long, and her hair is impossible. She will always struggle with her weight — she is genetically meant to be a heavy peasant-type like her paternal grandmother but because of current fashion will have to diet way below body type and therefore be unpleasant to her immediate family whenever bread or chocolate are present. Also, she is impulsive, obsessive, and very hard on people. She can be lazy, too. She cannot do any math above a fifth grade level. She is argumentative. Positives are: she loves beautiful things, she loves to write, she loves very deeply, with her whole heart. Which can also be a negative. Therapy might be a good idea at some point.

Why is it that only the disabilities get the downer report? I think all we really need to know is how to care for this child and help him be the best he can be. All the other loathsome crap can be checked at the door, thank you very much. Life is hard enough.

Wednesday, February 8, 2006

The Good Life

It is fifteen minutes before I have to leave for a reading in a library not too far away. I have been reviewing my notes, now old and worn from all the events I’ve had since MPWA came out (Aug. 30). Even though I didn’t want to, I forced myself to delve back into parts of the book that I have not looked at in months. I always think I’m going to be bored with it because I went over those parts so many times while writing and then editing the book, but of course I never am. It is my life, after all. As I told Jay McInerney the other night, when I heard him read from his new wonderful book, The Good Life, my book is most definitely a memoir, and unlike James Frey, there’s no way I could have made all this up!

I have recently divided my book talk into three parts, the stages that my family went through in dealing with autism in our lives. I think is is a good way to think about what we go through in our quest for strength and a good life of our own.

The first stage was what I call wondering and worrying. This included the earliest days of Nat’s babyhood, all the way until he turned three and was diagnosed with a form of autism.

The next stage was anger, grief, and learning. This stretched from the time Nat was three until the time he was 11 and was expelled from his school program. We hit rock bottom as a family, dealing with terrible aggression and less and less understanding of who Nat was.

The third stage was understanding, expansion, and connection. This is from the hardest period when Nat was 11 to where we are now. We now understand that Nat’s “behaviors” are expressions of what he is feeling or trying to articulate. We know that Nat is often trying to be a part of things, to connect with us, but in his own way and on his own terms.

Thinking things this way has given me a sense of where we’ve come from and where we are. It is true that we have let go of certain dreams we had when our first baby was just born. But I think everyone does that over time. Parents cannot apply their vision to their children; it just doesn’t work that way. With something like autism, you find this out earlier than usual.

Our life has settled into more of what I think of as “fairly happy, fairly normal.” We try to get each of our boys into activities, or playdates, or sports, or do family outings and have vacations. Ned and I go out together or with friends or alone. We go out with just Nat, or just Max, or just Ben — or all three. Our lives are not proscribed by autism. Autism is just many of the conditions we live with. Nat is not a handicap to us, nor a burden. He has his limitations, just as we all do. He has trouble using English and thinking of what others may want. He resorts to aggression (rarely but intensely). But how about the rest of us? I am oversensitive, moody, and impulsive. Ned withdraws into his computer and his math. Ben gets angry easily and Max goes quiet.

I am not trivializing the hardship that can be attached to autism, but it would be dishonest for me to say that I feel it very often. Only now and then, when Nat is particularly thorny, or when I see a typically developing boy just his age, do I get a pang, an wish for something I can’t have. Only now and then.

It is a good life, but you have to learn to reach out for what you can.

Tuesday, February 7, 2006

Life’s Top Ten +

A friend just blogged her top ten things that keep her happy to be alive. I love to do that, so here are mine, in no particular order:

1) Finding out that I was pregnant (March 1989, July 1991, August 1997)
2) Seeing/smelling my babies for the first time
3) The glorious April day/night in 1982 Ned went from friend to boyfriend
4) Being close to my sister Laura (lately better than ever)
5) Having parents who are (alive, thank God), fairly cool, and fun to be with (when not bugging me)
6) The day my agent sold my book
7) The day of thaw (every year) when I realize winter is truly over
8) The first time I gave a talk and realized I was good at it
9) Realizing we were going to buy this house
10) My new, very intense friend — you know who you are — no guessing, please

1) The first trip (every year) to the ocean after the winter
2) When Nat learned to read
3) Learning that Benj was “normal but stubborn” after his eval.
4) When I told Max about God, when he was three, and he said, “I like him.”
5) The gorgeous moment when Ned finally agreed to marry me*

*To be blogged, explained, and given its due at a later date.

Sunday, February 5, 2006

The I Hate Oprah Book Club

Warning: Self-Pitying Rant Ahead

Here’s a novel idea: Maybe I should start an “I Hate Oprah” book club, to counter the outrageously unfair Oprah phenomenon. I could call it the “Sour Grapes” Book Club, so as not to offend Ms. Winfrey (in case she ever deigns to choose my book). But truly, I am in a snit here. How unfortunately true that there is no such thing as bad publicity? Take a look at the torturous New York Times bestseller list (worse than my daily venture onto the Amazon book rank chart) and you will see that number 1 is Elie Wiesel’s Night. I have nothing against Mr. Wiesel, in fact, I loved Night when I read it one hundred years ago! So let’s forget the fact that the noble and deserving Mr. Wiesel has not had a new book in ages, nor has a movie been made of Night (and we should thank God for that, it would be sad, so very sad that we would not recover); it is because Oprah chose him!

But far worse than that is the slap in the face to all decent writers, that the infamous James Frey, of A Million Lies fame, is number 2 on the bestseller list!

Meanwhile, we lesser writers slog away, traveling the countryside week after week, spreading little droplets of wisdom (or some facsimile thereof), hope, and cheer — not that there’s anything wrong with that — and Ms. Winfrey has yet to choose them for her illustrious, fame-boosting book club, or worse yet, do a story on autism!

Why, oh why, can’t she use her powers for the good? Or at least, to help sell my book?

Friday, February 3, 2006

Ungrateful Dread/Cooking with Sass

As I have said in previous posts, I am no hausfrau. Technically, however, aside from “rarely-paid writer,” my primary employment would be “housewife,” because I am married to my house. I hate that job, though. Even though I love my house, my husband, and my kids, sometimes I do not like any of them for the difficulties they impose on me. More than anything, I hate the 5:00 pm. hour. When 5:00 pm. strikes, I am cloaked in a black cloud of despair as I consider what the f*** I am going to make for dinner. This is because 1) I would much rather sit on my derriere and blog or write other columns that will most likely go nowhere; and 2) I hate cooking for people who hate my cooking.

Why do my children hate my cooking? I often consider, “which came first, the chicken, or the egg?” Well since eggs are for breakfast and chicken, dinner, I suppose the egg did. Also, because my children were once my eggs, I guess I have my answer: it is my fault that they don’t like my cooking, it is genetic. What I mean is, how did it start? Did I hate cooking meals that little kids eat, or did they hate eating the meals that I cooked for them?

I remember fourteen years ago, in early pregnancy with Max, cooking Nat’s little dinners in the toaster over and microwave: hot dog and frozen vegetables, and wanting to throw up from the smell of the salty red meat and the sickly sweet aroma of freezer-burned cooked carrots. Somehow, that scent memory remains, all these years later. No matter what I make for them, no matter how carefully I think about what they like and how to prepare it, one of them is guaranteed not to like it, and I am going to feel slightly nauseated by the sight of their plates, loaded as they are with three piles: protein entree, carbohydrate side dish, and vegetable. So predictable, so boring. Nothing may touch on these plates; it’s as if none of the food components can stand the other, and who could blame them?

Here is the piece de la resistance: Benji requested steak the other day. I was (foolishly) delighted. How adult, how interesting, and how Atkins-friendly! I asked him, “Why steak, Benj?” and he said, “Well, Obelix eats it in the Asterix books and it always looks so good. Plus, it has that white thing in the middle, which is really the bone that runs all the way through the middle of the animal” (which it turns out, was wild boar).

I should have seen the trap! But I did not. Hope springs eternal, after all, especially in this mother’s breast. So I bought two lovely steaks. I don’t really know how to cook them so I consulted two cookbooks (unfortunately the Brat Cookbook had not yet been written — see below), so I looked at Joy of Cooking and The New Settlement Cookbook. After that, I decided to pan-fry my steaks, which seemed thin enough.

While the meat browned in the pan, Ben took a peek. “That’s not steak!” he exclaimed. “Huh?” I mumbled. “Sure it is, Darling.” I was not yet alarmed. “No it isn’t,” he insisted. “Steak is red and has that white round thing in the middle.” “Well, this steak doesn’t,” I explained foolishly. “It’s steak, and you’re going to love it.” Well, maybe I didn’t say that, I may have said something slightly more threatening.

At around this time Max came into the kitchen, took a look in the pan, and wrinkled up his nose. My heart started to sink, but I valiantly persevered, flipping the leathery gray slabs and cutting them open, only to see red spurting out with every jab. By the time Ned came home, the steaks were in the broiler. About an hour later, I pronounced them e-coli free.

Nat did his usual, slathering it with half a bottle of barbecue sauce and then moving over to the french fries. Max avoided his steak for as long as possible, sneering as he chewed his bouncy half-thawed peas. Benji looked at his cut up steak bits and said, “This isn’t steak.” I looked at him and said, “I wouldn’t say that to me while I have this knife in my hand.” (I am not proud of it, I am just telling it like it was.) Ned said, “Put a lot of salt on it; that’ll make it good.” Ben complied, thankfully.

They all managed to choke down a lot of steak. In the end, my plate looked worse than anyone’s because of gristle and red pieces.

So, I have two things for you, dear readers: 1) Does anyone have any ideas of what I can cook for these ungrateful eaters? and 2) What do you think of my writing a Brat Cookbook?

At least if I did the latter, it would take me away from actually having to make dinner on time.

Thursday, February 2, 2006

Crazy about Hair

I was driving back from an event in New Jersey yesterday, (in my new XC90, by the way, every bit as wonderful as I imagined. We are going to call it “Das Boot,” as a nod to both its yacht-like hugeness and sleek dress boot aura.) I had stayed at my parents’ house for two nights because it was so much shlepping. Dad, ever cool in his musical taste, even at the age of 68, lent me his CD “Hair,” the original Broadway recording. I used to listen to Hair as a little girl, which he played while he exercised in our basement playroom. We had a phonograph down there, and he used to run in place with music blasting. I guess I was six when it came out (1968?). So many of the songs are inappropriate for a small child, and I don’t remember how my dad explained the strange words in some of the songs. I don’t think it actually came up; there are many things little kids accept as the mystery of adultworld.

What I do remember is how he explained the political upheaval of the era, how proud he was that people were finally asking questions about everything that was going on, from horrible foreign policy decisions (Viet Nam War) to interracial relationships to how men should wear their hair. Hair is breathtaking in its joyful innocence and exuberance about everything in life.

As I was driving home, I blasted the music and was transported to the basement playroom. Sometimes tears streamed down my face as I recalled playing at Dad’s feet, looking up at him, so big, strong, and wise! How excited I was back then, about the era I was living in — because of his excitement. His attitude of “Question Authority” and reverance for progressive ideas has stayed with me and helped make me who I am.

I played some of the songs for my kids, “Hair” for Max, who has shoulder-length hair. The lyrics are very a propos to his hairstyle and worldview:

Give me a head with hair,
Long, beautiful hair,
Shining, gleaming, streaming, flaxen-waxen…
…Oh say can you see, my eyes?
If you can, then my hair’s too short!

While he listened, I hoped he was grooving on how there could be an old song that expressed some of who he is; I hope I get an opportunity to convey some of what I got from this album, to him.

I also played it for Benj, who is just the right age for some of the songs (I skipped the more outrageously inappropriate ones, about drugs, and sex). He loved “I got Life,” because the guy says, “I got my ass!” He also loved “Crazy for the Blue, White and Red,”

Crazy for the blue white and red,
Crazy for the blue white and red,
You look at me, what do you see?
Crazy for red blue and white…
My heart beats true… for the red, white and blue!
Crazy for the red white and blue, and yellow…fringe!

Because it is okay to mix up the colors and disrespect the traditional; you can still love your country! This is what I explain to my kids. That is what America is all about — or should be/used to be.

Wednesday, February 1, 2006

SOTU Stream of Consciousness

nucular, nucular, nucular
bi-partisan — when it benefits my party
it’s my party and i’ll bi if i want to
one-sided standing o — standing orgasm after standing orgasm
hillary smirking
will lieberman eat ham-as?
condy rice looking nice
evil dum and evil dee on either side of president b
do you wear a blue tie or a red one?
no cliche left behind
State of the Undone