Susan's Blog

Friday, April 28, 2006

Novel Novel Scenes

More novel excerpts. I have changed the main character’s name from Nat to Emmy because it was confusing to people, given that my son’s name is Nat. I also changed the estranged husband’s name from Todd to Eric, for reasons I cannot disclose except here’s a hint: I have a thing for Eric Clapton.

As she opened the waiting room door Emmy thought, see this is why you don’t get involved with your kids’ specialists. You don’t shit where you eat.

Jim was standing behind the desk, sorting mail. He looked up at her. “Hey,” he said, friendly enough. Well, thank goodness he could be a professional.

“Hi. Go ahead, Nick, take off your sweatshirt.”
“Yes,” said Nick.
“Seems happy,” Jim remarked.

“Yeah, sure. I think he likes coming here,” Emmy said, taking a seat. She glanced at the magazines but they were all the same as last time. She really should have brought a book.
“You don’t.”

Emmy just looked at him. She had tried to block their date from her mind. Her experience with Eric had left her feeling mixed up about where she stood with Jim, and whether she should even be considering dating him at all. “I’m fine.”
“I don’t think so,” Jim persisted. “Nick, go in and play with the play-doh for five minutes while I talk to your mom.”
“Play-doh, yes.” Nick ran into the room.
“I hope he doesn’t eat it,” said Emmy. Nick had always loved the salty flavor of Play-doh.
“It’s non-toxic anyway. What kid doesn’t eat Play-doh?” He came over and sat right next to her again. Just smelling his soap smell made Emmy want to bury her head in his shoulder. How could she like him so much physically, when they hardly got along? “You seem so forlorn. What is it?”
“Jim, it’s hardly the time for a heart-to-heart.”

He gave a self-conscious cough, slapped his knees and stood up. “Suit yourself.” He walked away. Then, “Nick! Whoa, looks like you like orange, huh Buddy?”

Jim brought down the Beginning Drawing book that was something he had brought to the office on a whim, as something to fill the vast bookcase that took up one wall. He had found all but the very first lessons to be elusive to him; his skill was definitely in the oral and verbal rather than the tactile or artistic realms.

But something about the way that Nick had opened every can of orange Play-doh and pressed his fingernails into the flattened mushy discs, the same pattern every time, gave Jim an idea.

“Nick. No Legos today. Today, art.”
Nick did not respond, but kept indenting the Play-doh with his thumb and then index fingernails.
Jim leaned over and put his hand on Nick’s, to stop him so that he would attend to him. “Nick.”
Nick looked up and then away. “Yes. Art. Okay.”
“Good, you heard me. I think you like art.”
“You like art.”
Ah-hah, thought Jim. An immediate response, though echolalic, indicated some passion. “So we can work the Play-doh for a while and then maybe take a look at the is drawing book and get out the paints.”
Nick snapped his head up from the Play-doh. “Paints, yes. Yes.”
“You like paint?”
“You like paint.”
“Then let’s paint.”

Jim brought out large white paper, brushes, and paints. He opened the Beginning Drawing book, and pointed out the steps of forming basic bodies with the most basic shapes. He would point to a shape and ask Nick to tell him what shape it was, and then have Nick first draw it with a pencil, and then he got to draw it with the brush in the color of his choice. Nick had no problem doing everything Jim requested, and had a remarkably steady grasp of the pencil and the brush, far better than his shaky handwriting indicated.

By the end of the session, Nick had drawn and painted a house, a snowman, a cat, and a clown, using basic shapes and naming them all clearly. His lines were crisp and true and he always chose his colors in the same pattern: orange, red, green; orange, red, green.

“Let’s hang them here to dry, Nick. It’s just about time to go home.”
Nick jumped up from his chair. “Yes. Go home.”

Outside in the waiting room, Jim walked over to Emmy. “A fantastic session today,” he said. “Does he paint much at home?”
“You know, only just now, because we tried it when he was little, you know, when they’re like three or four and you get them finger paints – “
“A lot of neurologically atypical kids are squeamish about messy wet stuff like finger paints.”
Emmy nodded. “That’s what I discovered. I tried brushes with him, too, but he just looked right through them. After a while, I gave up, you know?”
“A hazard of the disability. Sometimes these kids aren’t into things developmentally until years passed the time.”
“Yeah. But I found out the other day kind of by accident that at school he had been thrilled with painting, particularly orange paint. So I bought him some, right away, and he’s been painting in his room every day after school.”
“Really? Independently?”
Emmy nodded, smiling. Pride shone from her eyes. “It’s the first thing he has ever liked that I can understand. You know, not much I can do with wiggling string or squeezing air with my hand.”
“I know what you mean. This is fantastic. We can really do a lot with this.”
“That’s great to hear.” Emmy smiled warmly at him, and with that, all the bad feeling from the other night dissipated.

Henry knew that he had a few more minutes until Mom came back with Nick from therapy. Little Thing 2 was watching Dinotopia, a really bizarre long movie, so he’s be okay and would leave Henry alone for a while. He deserved a little break. He had worked all day in school, aced his math test, did okay in French, and even got out of breath in gym. Then, onto Taylor’s office, to Xerox like a million things and staple them. Then, home to watch the brat. Yeah, now it was his time. He dug out a joint and lit up, with his window cracked a little bit.
He coughed and felt the slow heaviness settle on his brain, stroking his thoughts until they each stood separately like a shining beautiful thing. He thought about Sylvie, now in the privacy of his room, and how she had stood up in front of the class today presenting her report on a figure in 20th century American history. Sylvie had picked Amelia Earhardt. Not that original, but he knew that Sylvie had wanted to choose a woman; who could blame her? She had looked luminous; he had just learned that Wordmaster word. Usually he hated spelling but luminous reminded him of pearls, flower petals, ice on a lake in the cold sunshine. Sylvie.

He closed his eyes, seeing Sylvie, and dragged on the joint a bit more, until his thoughts were too muddy to look at anything clearly. He could hear the noise from the movie coming up through the floor and he could practically see the dinosaurs marching in front of him.
Suddenly, his head started hurting like a hammer had come down on his skull. He stood up, clutching his forehead. As soon as his feet hit the floor, his lunch traveled upwards, seizing him by the throat. Covering his mouth, but knowing it was futile, he tried to run to the bathroom. But he could not move his feet quickly enough. It was like they were blocks of cement. Panicking, he reached for the desk chair to pull himself along, but the chair flipped over and he fell on his back. The vomit started coming up, out of his mouth, all over his shirt and the floor. He could smell the acrid aroma
and this made more vomit heave upwards. He closed his eyes to all the pain and disgusting odor around him.

The joint fell from between his fingers, next to his bedspread which dragged on the floor. The end of the joint glowed, a tiny dot of orange, turning the hem of the bedspread gray, then black as its heat spread across the white cotton.

Thursday, April 27, 2006

Autie boy

I was so taken with the Code Monkey song that I decided to write a parody, “Autie Boy.” I hope everyone understands that I’m rooting for Autie Boy.

Autie boy get up, get breakfast
Autie boy go to school
Autie boy make boring schedule
But Autie boy no fool.
Teacher say “Autie boy very diligent
But his data sure stink
Not making 80 percent with ABA
Why can’t Autie boy think?”

Autie boy think maybe teacher want to perform boring discrete trial tasks by herself
But Autie boy never say it out loud
Autie boy not verbal
just cowed.

Autie boy like M&Ms;
Autie boy like wiggle string
Autie boy not a simple boy
Big warm fuzzy secret thoughts
Autie boy like stim

Autie boy hang out at bus stop
Cause the bus routes look nice
Autie boy want to ride forever
Not just once or twice
Bus Driver say no thank you to this rider ‘cause
Autie boy give him the creeps
Anyway you go to subway now
Horn make too many beeps

Autie boy have long walk back to apartment
Sit down watch t.v.
Autie boy not watching the show
Only want see credits — you know

Autie boy he good at b-ball
No one gave him a glance
Autie boy keep doing his training
Hope to get him a chance
Coach say go in at end of game
That won’t do school no harm
Autie boy make 6 winning baskets
Magic come from his arm

Autie boy think someday he get to live in world where no one thinks he’s weird
Where no one thinks he is sick
Where people accept his shtick.

Autie boy like M&Ms;
Autie boy like wiggle string
Autie boy not a simple boy
Big warm fuzzy secret thoughts
Autie boy like stim.

Wednesday, April 26, 2006

Orange You Glad?

Another excerpt from my new novel-in-progress. Remember, Nick is the autistic kid, Nat is the mom. D*** is the guy Nat is having an affair with, and Todd is her husband.

Art was next on his schedule. Nick was breathing easily because art did not have words in it, or numbers. Or people. Margaret put the brush into Nick’s hands and gave him a color choice. He liked that: “Do you want red or orange?” And not, “What is your favorite color?” He did not know how to answer that. He knew there was a right answer to every question but that most of the time he did not know it. He hated words and the way they lumped together in front of his eyes.

The brush in the orange paint was smooth and beautiful. The paint was wet and glided all over the paper, turning white into orange. Nick dipped and stroked over and over, watching the tiny drips of orange dry and harden on the paper, watching the orange grow bigger. He wanted to do more with it, so much more, but soon the timer went off and he had to go to the next thing on his schedule. The hard knot in his stomach came back and he felt his hands squeezing. He saw an arm nearby, smooth and soft and close, and pinched it hard. Then there was a little yelling, which made him want to cry, but then he had to sit by himself for a while, which was very good. He almost forgot the orange. Almost. But when Margaret came back she had ugly bandaids on her smooth arm and her eyes looked at him too hard.

“I know you liked the painting, Nick, but we have to do other work now. If you do a good job, we can do more painting, okay?” As she spoke the hardness left her eyes and he could breathe again. He had heard what she had said, about the orange paint, and he was able to say the right thing back, “Okay, yes.” He rocked a little and squeezed the air, and waited for Margaret to give him his work.

Nat had finished dressing and was getting ready to call D***. It had been days since he’d left his voice mail. She did not know what to say to him, or what to do about their strange relationship. And there was Todd to consider. And Jim, now. At least Jim was unattached. She really had not wanted to speak to D*** until she knew how she felt, but no clarity had come to her in all these days.

The phone rang, startling her. She waited for the Caller I.D. to come up. “Ford School,” Nick’s teacher. She picked up. “Hello?”

“Hi, Nat? It’s Margaret from Nick’s classroom.”

“Oh, hi!” Her anxiety level jumped. A call this time of day from the school was never good, no matter which of her sons it was about.

“Hi. Nothing’s wrong. Just wanted to let you know there was an incident today.”

An incident. The school’s banal way of discussing difficulties that arose with the students.


“Yeah, it happened just as he was finishing one thing and was asked to transition to another part of his schedule. He aggressed with a teacher.”

Nat knew there was little point in trying to get more details from her; the staff was extremely careful at maintaining confidentiality and what they considered to be professional neutrality from their students and the families. But she had to ask anyway, “Who was it? Did he hurt anyone?”

Margaret hesitated. “Just a staff person, no, it’s fine.”

Nat felt that it was Margaret herself who’d been hurt. She always wished they would tell her and make Nick apologize, make him have normal consequences, rather than autistic ones. Rather than treating him like a set of behavioral problems to be decreased or discouraged. Nat also wanted to know what were the activities he had been doing at the time; was there a reason behind his aggression, other than what the school saw as autistic stubbornness? Maybe he merely had liked what he’d been doing. Whatever it had been. And if there was something Nick liked that much, she wanted to know what it was! “Can you tell me what he was doing just before he aggressed?”


“Uh-huh. Did he like it?”

“Um, I guess so. He stayed on task admirably. Covered an entire sheet of paper with orange.”

“So he likes orange?”

“Well, I guess he does. He was offered a choice of orange or red. He picked orange.”
Nat wondered what would have happened if he’d been offered more than two pathetic colors. Nat liked Margaret but she sometimes could be a little too crisp, too professional, and things usually worked much better for Nick if is teachers were sloppier, and more in love with him. She wondered, what else did Nick like and want that he was denied? Her heart twisted in pain for her silent son.

“Okay, well that is all good to know. I hope the rest of the day goes better.”

“I’m sure it will,” Margaret said warmly.

As Nat hung up, she told herself to remember to buy a set of paints this afternoon.

She zipped up her boots and decided she would call D*** a little later. Right now she had to get to a showing, the Pearls again.

The condo they were seeing was in The Farm, a historic section of town that was extremely desirable and difficult for most middle class people to afford. But, she figured, maybe the Pearls had some undisclosed source of income, so who was she to judge?

As soon as they pulled up she knew she had a sale. The look on Mrs. Pearl’s face gave it all away. The neighborhood had all the signs of pedigree that Mrs. Pearl craved: tasteful black or silver Mercedes, Audis, and Volvos were parked outside on granite block driveways. The gardens out front were small but well-tended, with neat gravel or winding brick paths. Black wrought iron or stone balustrades edged properties and terraces. It was a 1.5 million dollar two-bedroom, but every square foot was polished and perfect. Mrs. Pearl tried to restrain her Cheshire cat grin – she was already trying hard to fit in here – but every few feet she let out an “ooh,” or “aah.” Nat didn’t like her, but she couldn’t blame her, either. This was a pristine, beautiful showplace.

They walked through it and within fifteen minutes told her they wanted to make an offer, before anyone else did. Nat smiled. “Sure, let’s go back to the office.” Hah, D***, see? She thought. I may not be a real estate wiz, but I know people.

Nick settled himself into the middle of the white couch. Mommy was nearby, so he crouched over, covering his face with his hands so that he would not have to look at her. Most people’s eyes hurt him, or scared him. They glowed outward from faces and pressed into him, making all the words in his head whirl around or disappear.

Mommy moved into the playroom. He heard rustling in there, but no talking. He felt the breath come out of his throat again, open again. He opened and closed his hand, and felt the air stir around his fingers. He thought over and over about the orange paint at school. The orange had filled up his head and burned in front of his eyes, but in a happy way, like music. He had wanted to sing while he painted, but he knew that he couldn’t do that in school. Someone was always saying, “Quiet” to him, except when they wanted him to talk. He did not understand those rules either.

But the painting had no rules. There was just the liquid fire on the soft page. The perfect furry black brush, soaked exactly right with orange. He almost cried remembering the orange, but like the way he almost cried when Mommy made fudge. The taste filled him up, blocked out all noise. This was what orange did.

“NickIhavesomepaintforyou!” Mommy came crashing into the livingroom spouting loud words. Nick covered his eyes harder.

“Nick,” Mommy said quietly and slowly, “I have some paint for you. Like at school.”
Nick popped up his head. “Yes.” He stood from the couch. Mommy p
ulled out a rustly white bag and dug around. She produced four brushes of differing thickness, and five fat jars of bright paint, two of which were orange.

Nick stared at all of this for a moment, smiled and turned away.

“Oh, Baby Delight,” Natalie whispered, calling him his very first nickname that she and Todd had thought of, because of the way he would turn away from them as a baby when he was especially happy. She handed him the bag and watched him run upstairs to his room, a tearful joy on her face, knowing that she really had gotten it right this time.

My Code Monkey

Code Monkey is a funny song that is making the rounds in geek world. It is all from the perspective (and in the language) of a code monkey, who says things like, “Code Monkey get up get coffee; Code Monkey go to job. Code Monkey have boring meeting. Boring Manager Rob.” Some of this rings very true, even for a Code Gorilla like Ned, who would never have to write code for a boring login page. Later on Code Monkey confesses that he has “a big, warm, fuzzy secret heart…Code Monkey like you.” Code Monkey likes the girl at the front desk, likes her sweaters, and tries to buy her sodas, but she won’t drink them because they make her fat. That’s me!

Here is my own highly evolved Code Monkey. Sweet!

Tuesday, April 25, 2006

Juicy New Project

I have been writing my novel, so my energy has been going into that rather than the blog. That is a good thing, however, because I need to have a big writing project again; my emotional and creative energy have been so scattered and shredded lately. I met with my editor last week for lunch and although it was great seeing her and catching up, and talking about potential projects, I walked away a little shaken. This is because she had listened to my new autism book proposal, and she told me that it was a “smaller book” than MPWA. Translates to = narrower market, paperback original, smaller advance. “Why don’t you write about ______?” she suggested, a topic that we both knew that a friend of mine is working on and trying to sell. This felt lousy to me and, although an interesting topic, I could never do that to a friend.

BLAH. Back to square one.

But by Saturday, my head was back with Natalie and her boys, Nick, Henry, and Dan. Nick is very sweet and severely autistic, Henry is also a wonderful boy but struggling with drugs, and feisty Dan is struggling with being the youngest in a family that is very challenging. Natalie is separated from her husband Todd and is beginning to see other men. Her husband finds out and things become very complicated. My agent is discouraging me from going the fiction route; so much harder to sell. My editor: definitely not their kind of book.

But while doing an excellent workout on Saturday, I thought of the twist that I think will make my book interesting and edgy, and of course it has to do with playing around the edges of traditional marital fidelity, and keeping a family together in emotionally trying circumstances. Here’s a new excerpt:

Nat dialed the pizza place the moment she got in the door. “Henry!” she called with the phone on her ear. “Are you going to eat?”
Henry had stayed home from school today because he’d been so sick last night. Nat had had to force him. He claimed he was fine, but she thought he looked green around the gills, as her mother used to say. Must have picked something up at Todd’s.
“Nick, will you come in here and help Mommy with the table?”
Nick got up from his spot on the couch and pulled a napkin out of the drawer.
“There’s more than one person eating, ya know,” came Dan’s voice out of nowhere.
“Dan, where are you?”
“In here.”
Nat looked around the kitchen, under the table, but couldn’t find him.
The voice was coming from the slats in the louvred pantry closet. He couldn’t possibly fit – she pulled the door open and Dan came tumbling out. “Ow!”
“Well, honey, why were you in there? You’re too big for that.”
“I like it in there. I can be a spy. And let me tell you: that guy does NOT know how to set a table.”
“Well, why don’t you show him?” Nat asked, running out of patience. She got out the juice and the salt.
“Hey, I thought we were doing that!”
We. She liked that. Dan and Nick, doing something together. She smiled and stepped back from the fridge. “Oh, sorry. Didn’t mean to get in your way. Go for it, guys!”
“Yes,” said Nick, hurrying to pull out one more napkin.
“You need three more!” shouted Dan.
Nick put the napkin down and brought his palm down hard on Dan’s head.
“Ow! Stop that!”
Nick kept hitting in a blind rage, and then started biting his own arm as Dan began shrieking and crying.
Nat came running in from the dining room. “Nick! Nick! Sit down,” she pointed at the floor. “Time out.”
Nick sat down immediately but kept biting his arm.
“Calm hands, Nick. Calm hands.”
“That guy is a stupid idiot freak!” Dan was rubbing his head. “I’ll never forgive him for this! Never! I’m telling the President!” He stomped out of the room.
“Idiotfreak whoooom,” said Nick, covering his eyes. “Sorry I yelled at you.”
“Oh, Baby,” Nat said, and started to cry. “Oh God. I can’t do this. I can’t do this.” She balled herself up in the corner by the pantry door and just cried. After a while, she became aware of someone standing right next to her, completely quiet. Nick.
“Crying,” Nick said. “Mommy sad.” He was peering down into her face. He put his hands on her cheeks.

Sunday, April 23, 2006

Pigs Taste Good

Saturday night gave me a glimpse of my future. It was a little like Chinese food: sweet and sour. Both Max and Ben went to sleep over at friends’ houses, so Ned and I were home alone with Nat. We decided to go out to a restaurant we would not usually go to with all five of us, because we knew that Nat, the most mature and least picky eater of the three boys, would eat well anywhere. I didn’t want to spend a lot (see, I can change!) so I chose Chinese, a place in my favorite neighborhood in the more urban part of town. I had eaten a little too much all day, and the day before, and the day before that, so I (stupidly) figured “Oh, Chinese! I can really maintain a non-fattening meal that way.” So easy to lie to oneself when one is craving certain foods. Last night all I could think about was sweet, spicy sauce on some kind of diced protein. I figured I didn’t have to “count” the sauce. Uh-huh.

We drove around and around looking for parking, and I could just feel Nat becoming more tense with each disappointment. Here is a sample tense parking conversation:
N:”Oh, there’s one, she’s leaving!”
S:”No, Ned, that’s not a real spot!”
N:”Oh, sorry.”
S:”Jeez, who are they honking at?”
S:”What about that one? Can I get to it from here?”
N:”Yeah, but — d’oh, that person just took it.”
S:”This time I’ll drive around and go left. I have a little secret parking area.”
N:”Oh, look at this, clever!”
S: “See? Good parking karma.”
S: [upon exiting car] “Nat, you were very calm while we were parking. Good work!”
N: “Yeah. Natty, hold my hand. Nat, calm hands! Nat, we won’t go into the restaurant if you pinch.”
Nat: “Go restaurant.”
N: “Then don’t pinch.”
Nat: “No pinch. Go restaurant.”
N: “Lately this happens every time we go out. A little flare-up, then it’s over.”

We sat at a window booth, which always makes me happy. Ned ordered spareribs, which I thought I wouldn’t like them anymore, but, wow, I was wrong. After having like five little pieces, I noticed the traitorous honey-colored sauce beneath the pile. No wonder.
N: “See? Pigs taste good.” (This is one of Ned’s favorite phrases, because when we were first married, and for the longest time after, I didn’t ever cook pork, because my mother never did either. So when I finally started buying bacon, sausage, etc., I often exclaimed over how tasty they were. So Ned started saying, “Pigs taste good.” He even made it his signature for a while on email and his cell phone said it when it was first turned on. Just to remind me: buy pig products. Sorry to offend my truly Kosher friends, and my maternal grandmother, may she rest in peace.)
S: “Yes, they certainly do.”
N: “I was remembering when Homer Simpson was talking about all the different meats he liked, and wondering where they all came from: spare ribs, bacon, ham, sausage. Lisa goes, ‘Dad, they’re all from pigs!’ Homer says, ‘Oh, sure, like there’s some kind of magical animal out there.'”

It was a bit of a struggle getting Nat to try the spare ribs, but neither Ned nor I would give up because we absolutely knew he would love them. Finally, I put a little greasy pink chunk on his plate and said, “Nat, it’s like bacon. It’s sweet, too. You’ll like it. Just try it.” He gingerly poked at it with his tongue but then, of course, was completely blown away.

Ned and I continued to talk about whatever we wanted to, not afraid of kid interruptions (Nat never interrupts; he barely initiates any conversation at all). We talked, among other things, about our sex life, using subtle innuendo and hints, so that Nat would remain in the dark. This would never have worked if Max had been there, so it was a lot of fun.

Ned urged me to try “Dragon and Phoenix,” a sweet, spicy, chicken and lobster dish, sauteed with onions. OMG, as Max would say, this was one of the best things I ever tasted! Nat loved it, too, and scraped the plate (filled with fattening sauce) completely clean.

A peaceful, enjoyable dinner with my husband — and my nearly grown son. Not exactly how I pictured a Saturday night out, way back when, but back then, what did I know? I didn’t even realize that pigs taste good.

Thursday, April 20, 2006

Sew Happy Together

The spring birds and my own thoughts woke me up at 4:11 this morning. Not a drop of tiredness, but it’s coming, for sure. In the meantime, coffee: mostly-decaf, drop of cream, and 1 1/2 packets of Splenda, stupid, barely readable, gossip-lit novel, and laptop (and birds) to fill my senses.

Today is supposed to be the day, the warmest and sunniest day of the week, so all week I have been anticipating it. Ned, Max and Ben are going to the Big Apple Circus with Ned’s dad and Nat’s at school until 4 so I am here by myself for the first time since — I don’t know when. I am probably going to the beach. This has been one long school vacation, starting with Passover a week ago, Good Friday off, Boston Marathon on Monday, and the whole week of no school for Ben and Max.

I have filled myself with my boys this week. Mostly Ben and Max. I always dread vacation weeks because we generally make no plans and I worry about boredom and too much down time. As I mentioned earlier, however, Max had planned on making a Star Wars sequel, but I did not actually believe it would happen. His ventures are so ambitious, and he is such a perfectionist, that it is tough to get it right with him sometimes. I was surprised how well the green screen turned out and how satisfied he was with that. But then he started telling me how he was going to need seven Sith robes! And Ben kept asking what his role was going to be, and I kept noticing, with sinking heart, that Max did not answer him. Poor Little B.

Anyway, Max’s pouty words about the lack of costumes in stores finally got through to me. First I tried calling around, to I Party and to Toys R Us, to find cheap Star Wars costumes. But April is the cruelest month for costume wearers, it seems. None to be found. Next idea: go into the dress-up box and put robes together, from all the old Halloween costumes: Zorro cape, Dracula cape, guy-with-brain-leaking-out cape. All made Max sneer in disdain.

I saw what was coming before he did. Another trip to the fabric store. So, off we went, and bought twenty yards of $1.99 black. And, of course, a couple yards of brown to make one for Benj, who figured he’d be a young Jedi, even though Max kept saying, “NO!”

Lunch at McDonalds, in a sunny window table, view of the parking lot and Route 1 (ugly) the place was filled with threesomes, moms with two kids, dads with two kids. Vacation week McDonalds. I had two Quarter Pounders with cheese without the rolls (Atkins). I still can’t believe the counter-intuitive freakish way that I eat, but I have kept off that 20 lbs for almost 4 years. Drinking in my Diet Coke and that warm sun, I was filled with a feeling of wellbeing and just snuggling in the moment. Max and Ben are very pleasant to be with for the most part. Max’s low, soft voice and Ben’s helium-filled louder voice mingle and give and take, discussing the stupidity (or not) of Neopets, the fight scenes Max is planning, and the downhill progress of Happy Meal toys since Max’s younger days. His naive cynicism is one of my secret pleasures.

Back home, plastic bag full of fabric and potential. Okay, time to make the robes. We go to the third floor, where I have my sewing machine (named Irving, for my grandfather the tailor) set up. I have a river of black material spread out all over me and the floor, and Max and Ben trying to help (trying). We fold, cut, rip, pin. No measuring, no patterns. My favorite kind of sewing. I call on Grandpa’s spirit to help. I tell the boys about winding a bobbin, and why there’s two threads in a sewing maching seam. How Grandpa was so used to the old sewing machines, where you turned the wheel away to reverse, using your hands, and how he used to jam my machine because it was all electric. Ben feeds the fabric and steps on the peddle, Max does not want a try.

I end up with a huge Emperor’s robe, with some of the seams mysteriously inside-out, and a lot of lumpy fabric leftover in the hood. But Max is grinning at himself in the mirror, so I know it’s going to be okay.

They go downstairs and come up with a picture of a Jawa, and I determine to make that for Benj. It is much easier, it turns out, to work with three yards than ten. I piece it all together in fifteen minutes, pointy hood and all. A black stocking to block out Ben’s face. They are thrilled.

The best part is, the Jawa costume is too cool to leave out of the movie.

Wednesday, April 19, 2006

Calling Franz Kafka

A few friends have forwarded this link to me “Escape the Hopelessness,” from the National Autism Association, and I feel the need to blog it myself. Frankly, it is ads like these that make me feel hopeless. Hopeless that this society will ever be able to get to a place where they accept difference and even learn from it. I, for one, do not want any of my children, autistic or not, to morph into something they are not. Especially not some kind of bug.

Is autism treatable? Some say it is. But we have to be extremely careful that we are only treating difficult symptoms and not trying to alter who a person is inside. And sometimes, the symptoms are there because we lack the understanding, not the child. I remember when I finally let go of all my ABA training — I had been directed to make Nat file cards alphabetically to rechannel him whenever he laughed inappropriately — I discovered connection with Nat. In that split second that I did not reach for the file cards and instead, sat down on the couch and laughed with Nat, got as silly as he was, he looked at me, really looked at me, and soon his laughter died down naturally. In that moment everything shifted for me, and I realized that he truly is just a person, just a kid, with his own goofy way of doing things and it was up to me, the parent, to figure out how best to connect with him, rather than squelch the “inappropriate” without looking beneath the surface.

I think the question should be “how can I help my child be the best he can be without giving him a message that he is somehow defective?”

(Photo is Nat, caught “mid-flap” and doing silly talk while looking at his Lego swimming pool birthday cake)

Tuesday, April 18, 2006

Ziese Neshuma(s)

Here’s why autism does not rule my life: because Nat is a ziese neshuma, Yiddish for sweet soul. We have enough going on that the autism doesn’t jump out and seize me by the throat, the way it used to. Or I should say, the behaviors Nat exhibited due to autism, due to our not understanding his needs. We have enough going on, good and bad, Ned, Sue, Nat, Max, and Ben. Five puzzle pieces that fit together fairly well, some days better than others.

Yesterday I had the day from hell, and by the end of it, I was ready to go to bed at 8:30, two hours before my usual bedtime. Nat and Ben had just finished their showers, and were dancing around getting into pajamas. I got into mine and settled into bed and Ned said, “Really? You’re going to bed now?”

I sniffled, “Yes.”
He got in, too, and lay on his back, extending his arm towards me, his age-old invitation to snuggle. I told him why I was sad and he listened, offering advice or sympathy now and then.

Suddenly Nat walked into our room.
“Nat!” Ned greeted him enthusiastically.
“Hi, Sweet Guy,” I said, less so. What did Nat want? He did not usually come into our room. He usually waitied in his room, until someone remembered to come and kiss him good night.
“Yes,” he said, as always.
“Natty, come lie down with me,” Ned said.
“Yes.” Nat, so literal and physically awkward, threw his long bony frame right on top of Ned, making him gasp for air and laugh. “No, Natty, over here.” He made room for Nat, and Nat laid his head on Ned’s chest, his face just a few inches from mine.

“Oh, it’s the Original Three,” I said softly, tearing up from remembering lying in bed with Ned and baby Nat. One time, I tried to nap with little Nat right in the bed with me and we couldn’t because every few moments he would raise his head and see me there with my eyes closed and he would laugh his baby laugh at me. Oh my God, did that really happen? If that happened, then why was I ever sad about him? Why did it matter that we had some label to go with some of what he did? Why did I let that define him back then?

Oh well. Enough ass-kicking for today.

I extended my hand and stroked Nat’s cheek, still soft because he doesn’t shave yet (the long hairs on his face are white blond so he doesn’t quite have to). I pushed my hand under his face — his skin felt clammy and alive — and left it there, and he let me.

Why was he there? I think he was there because he knew I needed him. Like his father. Here we are at the NAAR Walk for Autism.


Here is yesterday’s “controversial” post. This is not about my love for Ned; it is about love in general, between friends. It is about how I have experienced love sometimes. Unfortunately, many, many times it has felt this complicated and painful to me. But not my marriage; never my marriage. That is one of the few things in this life that I have somehow gotten right (knock wood, etc.)

Why does love got to be so sad?
–Eric Clapton, 1970, before he pursued, won, then divorced Patti Boyd Harrison, his good friend George Harrison’s wife.

I know I’ve blogged this topic before,
so forgive me if it’s a crashing bore
But I’ve got to work it once more through
And bounce it off of all of you
I just want it to make some sense
But sometimes I fear I’m just too dense.
My question is: why do we love?
What causes it, what’s it made of?
What is that moment when you see someone
As something more than just for fun?
Why do we suddenly have to need
And those strong feelings, then, do lead
Us to forget ourselves and all we have
Thinking that now we’ve found a better half.
Is it all about luck and choices we make?
But in choosing we find a remaining ache
For we always seek that missing piece
One way or another, and find no peace.
–me, today, eternally

Does anyone else out there perceive certain relationships as a chase? Are all relationships, to some degree, about beloved and lover, as Socrates posited? Do all people have that moment of vulnerability, when they realize that they do indeed want/need this person, and in realizing the desire, they lose something? Why does that loss sometimes feel greater than what we’ve gained?

Just A Blog of Rain

Some of you may have noticed that I took down (and just reposted) my last blog post, about love. Some readers have been troubled by the fact that I talk about myself and my problems; someone even made the suggestion that if I’m going to do that, and not talk about my kids, I should start a new blog.

I’m not going to start a new blog. I have said before that my blog is about all kinds of things, but all related to me and what I think, how I process life. Autism does not rule my world, and neither do my children. I have been extremely bogged down with one particular friendship lately, (not my husband), and I have tried writing about it to gain clarity. This has helped me tremendously, though it has frustrated some readers.

I guess that is the hazard of relationships, and a hazard of the blog. For us all. The bloggers put themselves out there, and anyone can read and comment. Anyone. And the readers go to the blog in search of something, and sometimes they get it, sometimes, they don’t. The thing that bothers me, I suppose, is that people who came to my blog because of my book have a certain expectation that the blog will be just like the book, a family memoir kind of thing, when in reality, the blog is a lot more personal, self-indulgent at times, perhaps. But my blog is always honest, and that is the similarity to my book. I tell you what I’m thinking, what I’m going through, the painful, the beautiful, the ugly. It makes people wince sometimes. But it is always true. I put pictures of myself up there, and of those in my life who don’t mind being put up there. I think pictures explain what words cannot, and I think they are fun to look at. I sometimes allude to people without explaining who they are, and that’s because I either can’t or choose not to. But sometimes even I cannot put myself out there to have my ass kicked, so I took that post down.

I’m considering deleting anonymous comments because I don’t see any benefit to them. I think people use Anonymous mostly to jab and run. I put myself out there, I think the least I can expect is those who read and comment can put their names to what they write.

Bottom line here is that I am a whole person, not just someone’s mother or someone’s wife. This blog is a warts-and-all kind of thing. As the Grateful Dead said in 1970 in Box of Rain, “Believe it if you need it, if you don’t just pass it on.”

Monday, April 17, 2006

Blog Book Group?

I’d like to start a fiction book club. On my blog. I have tried being in book groups in person, and I don’t always love it, probably because I am a lot more private than I seem. I am sometimes uncomfortable with group dynamics. But I like one-on-one, and I love the distance and control that email and blog conversations give me.

I love to read, and I try to always have a book going. But lately I have been having trouble finding one I like, so I resorted to junk, which is never all that satisfying. The last great thing I read was the new Jay McInerney, The Good Life (I also heard him read it in person and was so taken with him that I wanted to flirt with him, but there were too many others like me there!). In the last year, I also enjoyed Prep, The Glass Castle, The Speed of Dark, Plain Truth, My Sister’s Keeper, Extremely Loud and Incredibly Close.

What is the common ingredient there? What causes one to pick up a book and make the effort? If anyone out there has similar taste, let me know and maybe we can try a blog book group here — and we won’t invite Oprah.

Sunday, April 16, 2006

Easter Shpiels

Ned sent me this great blog post about making Cadury creme egg cake! The guy who did this substituted Cadbury creme eggs wherever the cake recipe called for real eggs. This is what vacation weeks are all about, in my mind: fun and decadence. Maybe later in the day we’ll do the same, but with brownie mix. However, if I am to stick to my Atkins, what the F*** do I do with all that delicious chocolatey stuff lying around?

I make Nat eat it. Nat, the string bean, always hungry. At Passover, (my Pesach table shown here)
he ate three plates of my brisket and potatoes), loves intense flavors, just like his Mommy, and so I know he will eat as much sickeningly sweet chocolate confection and not even feel it! (Also like his Mommy: I have an infinite tolerance for fudge, chocolate, etc. Or I used to, pre-Atkins. Now sugar does make me ill. What a wimp!)

So, first we’re watching King Kong (the new one), which is pretty good. Although I don’t know why they had to “add” to the story by putting in dinosaurs and giant bugs, for God’s sake! What kind of mishegos island is this, with an oversized ape, dinos, and insects? And why didn’t the natives — who are smart enough to build this bridge-like catapult contraption to get across chasms on the island — figure out a way to leave the damned place? Instead, they choose to live in abject fear of all the grotesque life forms that surround them? That is where I refused to suspend my disbelief.

But Max likes it. Nat wanders in an out, waiting for lunch. I think after lunch I will try to take Max back to the fabric store, if they’re open — what is open on Easter Sunday? Not much, I would bet. Easter is a bit more of a mystery to me, a Jew who has never celebrated it; never even so much as an egg hunt! When I was little, my friends had those colorful baskets filled with ribbons of fake green grass and candy, candy, candy, while I had to munch on matzah. But unlike Christmas, I don’t know what they really do on Easter. My guess is: Church, brunch, family, egg hunt, candy-eating, special dinner? I’m sure my readers and friends will enlighten me, or even invite me next year!

If we get to the fabric store, it’s going to be an entire day of making Sith robes, for Max’s Star Wars movie. I’m going to have to buy like 20 yards of the cheapest black cloth and cut out robes for 7 boys. I figured out a quick and dirty way to do it: fold over three yards, cut out a slit for the head, cut out arm shapes, staple the whole thing together. Then, drape more cloth for a hood. Trouble is, Max is such a perfectionist that quick and dirty often upsets him.

The problem is, the outdoors beckon. I want to plant stuff! Mom brought me California poppies, the sexiest, most male-like plants around because of their black fuzzy buds that hang so provocatively, like testicles. Some have opened and there is this incredible lollipop orange blazing against the chocolate brown earth.

Another day with not much planned but enough beauty and peace around me to keep my heart full.

Saturday, April 15, 2006

Five Star Day

What a day. I started with a troubled feeling which led to the previous post, but a good bike ride helped ease some of that. Then, a trip to Fenway Park, a glorious walk home, a sweet nap, and dinner out. At the end of the night, Ned and I are going to watch The Aristocrats, which we’ve seen before. It is extremely raunchy, sometimes offensive, but really, really funny.

I bike this 10 mile loop which is both urban and suburban, with lots of hills, which I like because I enjoy the feeling of my legs working hard. I ride in the hardest gear all the time.

I began with a sweatshirt on but by the end of the ride the sun had come out and I could unzip it, and I needed my sunglasses. Every single shrub, branch, and bit of ground, was tinted with the new green of spring. Frothy pink trees had exploded into bloom overnight. Easter-egg colored tulips floated on fat green stems.

Came home, had lunch, and then Steph came over to be with Nat. The rest of us were going to Fenway Park, for our very first family baseball game, the Sox vs. the Seattle Mariners. We all know next to nothing about baseball, although we did watch and cheer when they won the World Series two years ago. I feel the need to explain why we chose not to take Nat. We were only given four tickets, and I thought we should give Ben the chance to get to like a sport, since so many of his friends do. Plus we thought Nat would just be spacey and maybe even difficult. Turns out we were probably wrong. Next time we’ll leave Ben, take Nat (if we only get four tix).

I thought the whole thing was going to be spoiled when we got to the gate and the guy made us throw away Ben’s water bottle. Ben had grown very attached to this water bottle, filling it daily and offering to pour us water each night at the table. But in order to enter the ballpark, I had to throw it out. It felt like flushing Max’s dead goldfish. Ben cried, and said that he was going to “tell the President about this.” I agreed that it was a stupid policy, and offered to buy him a new water. But his arms were folded and he was totally closed up.

As I said, our neighbor had given us the four tickets, which were amazing seats: front row of the new section one level up behind home plate. We were comfortable, had an excellent view, and there was food and drink service right there. We bought the boys hot dogs and Ben cheered up when he got his water. The game began and it was exhilarating to watch, because it was simply baseball and yet there we were, in Fenway, watching The Red Sox.

There was Papi (David Ortiz) and Manny Ramirez. We quickly learned all the things you’re supposed to do, like chant, “You, you, you,” when Youkilis comes up to bat, and to boo Carl Everett of the Mariners who used to be a Red Sox and apparently had once head-butted the umpire. And when Sweet Caroline (a corny Neil Diamond song that I deep down really love) came on the loudspeaker, we all sang and laughed. Ben asked for his pad and pen by the third inning. Every so often he asked when it would be over, but he seemed content. Max ate three hot dogs and kept in touch via cellphone, with his friends who were also there. I sometimes leaned on Ned’s shoulder and felt like I did so many years ago at Spring Fling at Penn, when we were 19 and newly in love. It was April then, too, and warm like today, with the same festive, picnic-party-like feel to it.

We chose to walk home because the T would have been too crowded, and it was only two miles, a gorgeous walk past the hospitals where all my boys were born. I wondered if Nat had had a good time with Steph, who was taking him to see Ice Age II. No calls from Steph, who used to work at Nat’s school, so I knew all was well.

Upstairs for a catnap. I sunk into my pillows and fell asleep right away. I woke up half an hour later, feeling a little refreshed but not enough.

After a while, it became clear that neither Ned nor I wanted to cook. I said, “I want something different, can’t we just do that for once?”

Ned said, “How about Thai?” Max groaned and Ben pouted, and my heart sank. Nat jumped up and said “Yes, go to restaurant.” Proving once again that autism does not have to be the defining factor in family challenges.

In the restaurant, Max was sullen and Ben was fighting with him over who gets which water. Then, the water had ice in it. Then, bits of lemon. Nothing was right. My head was heavy and still tired, and I said, chanelling my parents, “If you guys can’t be nice, I am going to punish you when we get home.” Instantly I felt like a heel. I sunk in my chair. Ned leaned across the table and whispered, “Sue, remember, this is new to them, and so whatever they manage will be a victory, right?”

I rolled my eyes. But I knew he was right. “Yeah, okay, I’ll try.” And then, I looked at them and felt those love-flutters pushing away my anger and I sighed and said, “I’m sorry boys. I’m just tired and I want to have fun.”

Ben said, “What would our punishment have been?” I smiled and said, “I don’t know. It was an empty threat, I guess.” We don’t punish them, I realized. We don’t have to. We speak firmly at times, and hold up certain boundaries and expectations, so punishment is never necessary.

Ben made chopsticks out of the chicken satay skewers and enjoyed using them with sticky rice. Max managed to eat some chicken and liked the sweet pea pods. Nat ate everything put before him: sweet beef, chicken satay, Pad Thai. Ned and I had pretty good curries.

And then, the piece de la resistance: At the end of the meal, a woman came up to me and said, “Excuse me. But I just read your book and I had to tell you I loved it.”

Wow. Recognized in a restaurant!

A perfect end to a five-star day.

Weighty Waiting

I have stated before that I am experiencing something akin to a mid-life crisis. I am 43, and some people think that is too young for this, but it is what it is. There are several reasons for this, having to do both with external and internal forces. I have reached a point in my life where my children are more self-sufficient than ever, and I believe that this has created a space in my days that I did not have before. Their lives have fallen into what is mostly a pleasant routine of school, homework, downtime, friends, meals, and — rarely — family togetherness time. I joke about how none of my boys talks to me, for one reason or another. But it is a truth that strikes deep. There is a lot of silence around me and I am grappling with that. I don’t do so well with silence.

All I really want to do is write. I want to have tons of assignments and things to write and crunched deadlines. I want my head to be swimming with ideas of what to write and where to send it. But that is not happening. I have written a bunch of poignant or funny essays but cannot sell them to my usual places. I have submitted a book proposal to my editor but cannot get her to meet with me. I have a regular column in the local paper, but they don’t want me to write every week because they already have so many columnists. I have this blog, and I always feel constrained about what I write here because I have been told by some readers/friends/my parents that they are a little afraid of what they might read.

You know what? That sucks. This is the Internet, for God’s sake. If you can’t write what you need to write on the Internet, where you are not subject to an editor’s whims or a newpaper’s style, where no contract or paycheck binds you, where can you write? Do I have to be concerned that my book won’t sell if I’m too honest in my blog? That’s stupid; the whole point of my book was to reveal an honest emotional process in dealing with something as difficult as a child with autism. If some have elevated me to some kind of hero status, they got me wrong. I’m just a woman trying to work it all out so I can be happy. Besides, I can’t live my life, or write my stuff, with one eye on marketing. That is so not me.

At 43, I’m happier than I’ve ever been — in some ways — and worse, in others. I suppose that’s life, where we can’t ever expect a complete, unsullied happiness. I feel that understanding the new empty spaces in my life are the key to greater happiness. I have sought to fill these spaces with various pursuits but remain emotionally unsatisfied, searching for more. What I am wondering now is:

What is the issue at the heart of things? The empty spaces that cause me to explore activities that are unfulfilling, or the unsatisfying pursuits that take my energy and leave me with gaping holes in my days?

Sometimes I think, “I should just get a job.” People think I’m crazy to want to work if I don’t have to. But I do want to be more occupied. I want to be paid to use my mind; isn’t that the ideal? Don’t we all want that? But that isn’t happening. I have been pursuing a university teaching job, more speaking engagements, a new book project, and freelance articles, but very little of this has panned out. Am I casting my net too wide, and not focusing my energy sharply enough on any one thing?

Or will something happen for me when the time is right? I also find that some things do fall in your lap, but sometimes even then you don’t recognize it as something important. I can look back and identify the turning point moments when things changed, the times in my life when I semi-consciously chose a new path and my life changed: the moment Ned caught my attention, by teasing me about something, and suddenly I saw him as a guy I wanted to get to know. The time I put together my first Nat book, propelled by the happy buzz of creativity and problem-solving; the time I wrote a byline in an article that read, “Susan Senator is working on a book about autism” before I had even started it, leading people to write me and ask about my book. The time I went to a gala that I almost blew off, and met an exciting flirtatious guy, making me aware that life could be more deliciously complicated than I had realized. The time I decided to give a signed copy of my book to someone I’d just seen on a panel at a conference — who would turn out, for better or worse, to be someone I call “INF.” The first time I read Autism Diva’s blog and learned about autism pride.

Until I figure it out, I remain in this strange limbo of half pleasure, half torture, surrounded by stillness and silence, yearning and waiting for something but not knowing what.

Wednesday, April 12, 2006

Looking for Ice Cream in All the Wrong Places

Warning: This is going to be one of those blog posts that makes the people in my life really uncomfortable and for which I get no comments. But I need the outlet, so here goes.

I think George Santayana said, “Those who cannot learn from history are doomed to repeat it.” I think that psychotherapists would agree that this is also true for relationships. If you do not learn from your upbringing the things that make you crazy, then you are probably doomed to repeat these unfortunate patterns and dynamics in future relationships.

Sometimes even when you know that you are involved in a destructive relationship,one that smacks of past unhealthy dynamics, you continue it. Why is that? I think it is in the hope that this time, you will get it right.

I am way past being angry about my flawed childhood, at least I think I am, but I do know that there is a legacy to deal with. My mother and father were at times difficult to read, emotionally. And I have always been very other-focused and introverted, and of course eager to please, as well as one to probe the layers, to make sure I am getting at the truth. So Mom and Dad were a challenge sometimes, which was stimulating to me on some level. I think that at a very early age I learned that love was supposed to feel like an anxious kind of excitement, where sometimes you hit it and sometimes you didn’t. I guess that is why I seem to have a knack for sometimes attracting people who do not easily show their love. The dynamic that gets set up is, I feel I have to earn it. I start to feel like if I can just “get it right,” then this person will be more forthcoming with their affection.

It is so frustrating to realize that this sort of person will always be who he/she is no matter what I do, and that I am going to therefore feel more and more compelled to get it right.

This is the phenomenon called “Going to the hardware store for ice cream.” No matter how many times you visit that place, you are not going to get the ice cream. There may be a sweet snack there that satisfies temporarily, but it won’t be ice cream and it is not always there; it is unpredictable. I am also reminded of that experiment with the rats, some of whom pressed the button and never got a pellet of food; some of whom pressed the button and always got the food; and some of whom pressed the button and sometimes got the food. The first two groups learned amazingly quickly whether to press the button or not. The third group always, always went back to that button in the pathetic hope of getting that delicious pellet. Intermittent reinforcement = anxiety in relationships. My finger clicking the “get mail” button is no different from those rats’ paws. Even as I write this, I have a terrible yearning for things to just be good again with INF.

I guess this is another manifestation of OCD [mine, but maybe also the rats’]. When I first had Max and Nat, I had OCD really bad. The checking, the cleaning, the whole horrendous thing. Basically the only thing that helped me then was to STOP. To stop and to realize that I had survived. Then this built upon itself until I no longer do any of that. But it has morphed into a new form: obsession over a person. A person who is not able to give me what I need except once in a while, but whom I am still foolishly and pathetically drawn to because this person is very familiar, brings me back to my original conception of what love feels like, a kind of heated, uncertain thing, rather than the still, solid, sunny thing Ned brought me.

I remember when I was first with Ned and I realized that he was so unchanging in how he treated me, no matter what I did or said, he was strong and centered and unflinching. I remember feeling like, “maybe I don’t love him,” because it was so encompassing, soft, easy. A bed you could just fall into, always there, always welcoming. Love had not felt that way as a child. It took a very wise therapist to show me that I had actually made the smartest choice of my life.

Why isn’t that enough? Why do I still seek the other kind of love?

How do I stop looking for ice cream at the hardware store?

Tuesday, April 11, 2006

Enough With the Tragic Autism, Already

Here is a letter to the editor that appeared in the New York Times regarding the article about siblings. I was blown away by this letter and I thought you all should read the article and then the letter.

Why Not Ask Us?

To the Editor:

Re “Siblings of Disabled Have Their Own Troubles” (April 4): It’s often been said that “less bad” doesn’t necessarily equal “good.” Such can be said about your article on siblings of those with developmental disabilities.

I am autistic. I have “typically developing” siblings. And I have news for you: all y’all aren’t that easy to live with, either. Neurotypicals are loud, impulsive, manipulative, too easily embarrassed and unpredictable. They have friends who are loud, impulsive, manipulative, too easily embarrassed, mean to us and unpredictable. M\ny an autistic child has been bullied by a group that includes his or her own brother or sister (who often claims not to be related).

But no one ever asks us. Maybe it’s time to start, instead of assuming we don’t have thoughts and feelings, and should be grateful just to have families that put up with us, at least sort of.

Maybe next time, someone should ask us. It’s time that people with disabilities had equal time in the “griping about siblings nationally” arena.

Kassiane A. Sibley
Missoula, Mont.

It is time for a new paradigm for autism. There is far too much unconscious bigotry, whereby we assume that the person with the disability is someone to be pitied, fixed, or rejected. Or the family with autism is the lowest on the totem pole of misery. But how do you measure such a thing?

Who can compare their misery to mine and come up with an accurate equation?

Some people assume that my life is so much harder than theirs because Nat happens to have autism. People tell me, “I don’t know how you do it,” and although I know they are expressing admiration and perhaps friendship, there is an element of separateness in the comment, and a lack of understanding of who I am and who Nat is. I shrug off what they say, and they assume I am being modest. I am not. I am just being me. Nat is just my kid. My family is just a family. Autism is a part of the family, but not its defining characteristic. I think that being a family of geeky males and one ultra femme female is more defining. Or, a Jewish family. Or a New England family. A family that likes witty jokes. A family that makes great birthday cakes, or who loves Cape Cod. But even those only scratch the surface.

Autism is not our tragedy. Nor is it my other sons’ tragedy. The tragedy is how easy it is for others to gloss over who we all really are and to see us by one label. The tragedy would be if Max and Ben (or Nat) were somehow stunted or wounded by events in their childhood or dysfunctional family dynamics. So Ned and I are doing everything we can to make things work in our family, where everyone is equal and has rights and feelings.

In a sense, Marx had it right: From each according to his abilities, to each according to his needs. In a family, this is probably the best way to operate. As my Grandma would say (may she rest in peace): “Genuck Shoen [enough] with the autism is a tragedy, already! He’s a beautiful boy, they’re all beautiful!”

Monday, April 10, 2006

Only the Bad Die Young

Yesterday I took Max and Benj to the fabric store to buy a bolt of neon green cloth. They were planning to craft a green screen, which is used as a backdrop in filmmaking when you want to shoot something with zero background. We bought about 7 yards, which I then tore in half and sewed the long way to make it very large. Then the playroom was completely rearranged, which gave me an opportunity to pick up huge dust bunnies and repot a plant. They are planning on using this room, with the fabric stretched across the back:
(In this photo the Today Show crew is filming Nat being Nat but you can see the large bay behind him.) Max is going to make a sequel to the final Star Wars, and he is currently working on the script. In a rare voluble moment, he told me that he and his friend Yaz will star and direct this episode, which will take place hundreds of years after Episode 6 (which I believe is the Ewok one, which people like me think of as Episode 3). Max tells me that he and Yaz will both be bad guys, but the problem is, for Max this means that they will have to die in the end, (the bad guys must die, he says) and he doesn’t want to die. I asked him why be bad in that case? They just find it more interesting, he told me.

I suppose that for some of us, being bad is sometimes more interesting than being good?

Ben keeps asking what his role will be in the movie, and Max is barely civil in his response. Is there anything less cool than a little brother trying to be cool? Just breaks my mushy mommy’s heart.

Sunday, April 9, 2006

Declaration for Independence

I have been asked to be a guest speaker at the Massachusetts State House in Boston on Tuesday, as part of Autism Awareness Month. I want to get the Legislature et al., to understand in a deep and personal way just how acutely challenging the whole Post-22 thing is for people with disabilities. I mean getting jobs, getting housing, having the right supports to be independent. This is the thing that keeps me up at night: the question of how best to help Nat live a good life, particularly when Ned and I are no longer around, without it being completely the obligation of my other two sons? I think the state has to do a lot more to help people with disabilities so that they can contribute more fully to society and live worthwhile lives. All it takes are laws, funding, and compliance! Below is what I was considering saying.

Right above my gym is a workshop for mentally disabled adults. When I see them climbing out of their van and walking slowly to start their day, my impulse sometimes is to look away. Maybe a lot of people feel that way. It’s not the kind of thing you really want to think about, the lives of the severely mentally disabled. But I have to think about it, because my severely autistic son is just a few years away from turning twenty-two, the year when going to school ends and adulthood supposedly begins.

I have been wondering about Nat’s future for much longer than I ever expected, from the time he was just a baby who didn’t respond to my overflowing love. I have long been dealing with his limited prospects and with the world’s lack of understanding, from the first doctor who told us that Nat probably would never marry (he was three years old), to the time five years ago when a prominent Children’s Hospital psychologist pronounced him “retarded,” to the blank stares we faced recently at his school when we requested stronger academics for him. We have had to think of our son defensively and strategically, always protecting him from the harsh world while at the same time pushing to get him ready for it somehow.

In my family’s world, independent living is the Promised Land, the dividing line, the measure by which you assess your child’s chances for a decent future. For the last six years, Nat has attended a private school for autism, at my town’s expense. It is a place where the emphasis is on job training — jobs like copying, watering plants, and stocking shelves. Meals on Wheels. They will do everything they can to make him ready for independent living. When Nat comes home from school, I often work on more of the same: chores, cooking, and self-care. We are on a two-year waiting list for a state grant (the DMR-DOE grant) that will enable us to hire someone to work with him on using the phone, taking the T, and talking to people at the counter in a store.

Just about every weekend my husband Ned takes Nat on a long walk into town, running errands with him.
This is part of our “community training” for Nat. Ned and I believe that we have to keep Nat fluid and flexible out in the world, so that he doesn’t become too routinized – a hazard of autism – and so that his repertoire of experiences keeps growing. Ned often springs the plan on Nat last minute for this very reason.

“Nat,” he’ll say suddenly, “Come with me to the library and CVS. If you’re calm we’ll get a treat.”

“Okay, yes,” is the sweet but odd way Nat always responds, whether he means it or not. Accurate answering is another skill we have to work on with him.

Outside, longlegged Nat lopes ahead and Ned runs to keep up so that together they can handle crossing the street. Recently Ned told me that Nat finally understands about looking at the lights to determine when it is safe to cross. But he was not happy as he told me this wonderful news: “Nat watched the lights change to ‘Walk.’ He was just about to go. It was a good thing I was standing with him because just then a car ran the light. Nat would have been hit if he’d been on his own.”

For nearly Nat’s entire life, we have sweated to teach him things that I used to think every human knows intuitively. Now, I want Nat to be independent like I’ve wanted nothing else, like some parents dream of Harvard. I don’t see Nat in a place like that sheltered workshop above my gym.
But I have to accept that it is a possibility. For some, it will always be a possibility. Because without the supports Nat receives in his school, he may not succeed on his own. We can plan for how he will work. We can spend every weekend trying to keep him flexible and ready to be out in the world. But without the right kind of help when school is finished, how do I make sure he is ready? After all, there will always be that one car that runs the light.

Friday, April 7, 2006

Back Home

I went to give a talk at the Barber Institute in Erie, Pennsylvania. There were about 180 enthusiastic parents, board members, education professionals and other staff people there to hear me give my “What’s Disability Got to Do With it?” talk. I really enjoyed the event, as I almost always do these kind of things.

But the best thing about the two days I was gone was Benji. Apparently when Ned went to pick him up from school he said, “I miss Mommy.” Probably most of you reading this are thinking, “That’s nice, but so what? He’s a little kid!” Well then you don’t know Benji. Benji never expresses vulnerable emotions. He has always been “sugar and spike,” cute as a button but as cuddly as a porcupine. You go to hug him and he turns around so he has his back to you. You say, “I love you, Little B,” and he says, “Yeah, I know,” sounding bored with the whole thing. I had long ago resigned myself to having yet another boy in my life for whom I have to guess his emotional state; moreover, for whom I had to take his love for me on faith. Obviously Nat is similar, in that he has autism and cannot express these kinds of feelings for me or to me. And Max is a fourteen-year-old boy, and the last thing on his mind is making his mom feel good and needed.

I have a lot of good friends as well as very intensely affectionate and expressive parents, and I have my writing as an escape. I wrap myself in all of them when I need to feel a rush.

But when Ned told me on the phone how Ben lit up when he saw my car in the driveway, and mistakenly thought I was home, (“Mommy’s home!”) I almost got on a plane to come home there and then. It was only then that I realized just how much I crave my kids’ open affection, and how rarely I get it.

So on the little propeller plane ride from Erie to Cleveland, Ben was on my mind. He was especially on my mind as the plane dipped, bumped, dropped, and creaked in the thick white clouds. I looked around, fearfully, and thought for a split second, “This is what heaven would look like if we crashed.” And then I thought, “Oh, God, we better not crash! Not with Benji now having had his heart opened up a tiny bit!” In my mind, I begged God to get me home to Ben, and I kept his little finely drawn face right in front of me the whole way.

And here I am. I rushed to the school to pick him up, grabbed him and kissed him, and he said, “Mom! PUT ME DOWN!”
I said, “Benj! I’m here! I missed you so much!”
He said, “I know,” and turned his back to me, collecting his school papers.

Back home again.

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