Susan's Blog

Tuesday, May 15, 2007

Stuff That Bugs Me

1) Boston Globe trying to be like New York Times but not managing it because Boston is not New York. We are not New York and that’s okay!
2) Self-consciousness (as opposed to self-awareness)
3) Losing weight in areas that don’t need to lose weight; not losing weight in areas that do.
4) Bellowing children
5) Not being able to figure out what makes children bellow
6) Being bored at the gym
7) Stupid heel-dragging editors
8) Roof repair
9) Having to listen to the roof repair man talk endlessly about roofing
10) Uncertainty
11) When my hair looks great but I really have to work out — and thus ruin the do
12) People who don’t RSVP
13) Realizing that I don’t RSVP sometimes, either
14) Discovering a bug (in the house) that reminds me of a baby cockroach
15) People who don’t click on the Tabblo and then thank me for sending it to them. Lies!!!
16) Not being able to lie in the sun because it’s bad for me
17) Ned will not buy a new car, and his is 13 years old
18) Kid birthday parties that are held in a faraway place
19) Meaningless lists that don’t even go up to 20

Mothers’ Day/Dad’s 70th

Tabblo: Total Family Fun
Monday, May 14, 2007

Disability Means Never Saying “Never”

The Sunday Times Style section packed a wallop yesterday. They ran a front page story on people with disabilities whose attitude is basically, “You don’t like it, lump it!” And they go clubbing with their prosthetic legs, etc. They are changing what the public sees and experiences with disability. The more familiar people are with very different types, the better off we all are. We need the familiarity in order to move away from initial contempt some of us might feel when presented with disability and difference.

The other bit of wonder produced by the NYTimes was the Modern Love piece on journalist Elizabeth Fitzsimons’ first taste of motherhood, which I paste in for you below. I wish I had written it myself, but having a loving friend email it to me on Mother’s Day because it reminded her of me is the next best thing. I love Fitzsimons’ attitude of wholehearted, fearful, yet unconditional love for her disabled adopted Chinese daughter. The cautionary message of the piece is also clear: be careful of doctors’ dire predictions. You never really know what a well-loved, educated, and nurtured child might be capable of and you damned well better never say never when you are dealing with human beings.

May 13, 2007
Modern Love

My First Lesson in Motherhood
I SAW the scar the first time I changed Natalie’s diaper, just an hour after the orphanage director handed her to me in a hotel banquet room in Nanchang, a provincial capital in southeastern China.
Despite the high heat and humidity, her caretakers had dressed her in two layers, and when I peeled back her sweaty clothes I found the worst diaper rash I’d ever seen, and a two-inch scar at the base of her spine cutting through the red bumps and peeling skin.
The next day, when the Chinese government would complete the adoption, also was Natalie’s first birthday. We had a party for her that night, attended by families we’d met and representatives of the adoption agency, and Natalie licked cake frosting from my finger. But we worried about a rattle in her chest, and there was the scar, so afterward my husband, Matt, asked our adoption agency to send the doctor.
We had other concerns, too. Natalie was thin and pale and couldn’t sit up or hold a bottle. She had only two teeth, barely any hair and wouldn’t smile. But I had anticipated such things. My sister and two brothers were adopted from Nicaragua, the boys as infants, and when they came home they were smelly, scabies-covered diarrhea machines who could barely hold their heads up. Yet those problems soon disappeared.
I believed Natalie would be fine, too. There was clearly a light on behind those big dark eyes. She rested her head against my chest in the baby carrier and would stare up at my face, her lips parting as she leaned back, as if she knew she was now safe.
She would be our first child. We had set our hearts on adopting a baby girl from China years before, when I was reporting a newspaper story about a local mayor’s return home with her new Chinese daughter. Adopting would come later, we thought. After I became pregnant.
But I didn’t become pregnant. And after two years of trying, I was tired of feeling hopeless, of trudging down this path not knowing how it would end. I did know, however, how adopting would end: with a baby.
So we’d go to China first and then try to have a biological child. We embarked on a process, lasting months, of preparing our application and opening our life to scrutiny until one day we had a picture of our daughter on our refrigerator. Fourteen months after deciding to adopt, we were in China.
And now we were in a hotel room with a Chinese doctor, an older man who spoke broken English. After listening to Natalie’s chest, he said she had bronchitis. Then he turned her over and looked at her scar.
Frowning, he asked for a cotton swab and soap. He coated an end in soap and probed her sphincter, which he then said was “loose.” He suspected she’d had a tumor removed and wondered aloud if she had spina bifida before finally saying that she would need to be seen at the hospital.
TWO taxis took us all there, and as we waited to hear news, I tried to think positive thoughts: of the room we had painted for Natalie in light yellow and the crib with Winnie the Pooh sheets. But my mind shifted when I saw one of the women from the agency in a heated exchange in Chinese with the doctors, then with someone on her cellphone. We pleaded with her for information.
“It’s not good,” she said.
A CT scan confirmed that there had been a tumor that someone, somewhere, had removed. It had been a sloppy job; nerves were damaged, and as Natalie grew her condition would worsen, eventually leaving her paralyzed from the waist down. Control over her bladder and bowels would go, too; this had already begun, as indicated by her loose sphincter. Yes, she had a form of spina bifida, as well as a cyst on her spine.
I looked at my husband in shock, waiting for him to tell me that I had misunderstood everything. But he only shook his head.
I held on to him and cried into his chest, angry that creating a family seemed so impossible for us, and that life had already been so difficult for Natalie.
Back at the hotel, we hounded the women from the agency: Why wasn’t this in her medical report? How could a scar that size not be noticed? It was two inches long, for God’s sake.
They shook their heads. Shrugged. Apologized.
And then they offered a way to make it better.
“In cases like these, we can make a rematch with another baby,” the one in charge said. The rest of the process would be expedited, and we would go home on schedule. We would simply leave with a different girl.
Months before, we had been presented with forms asking which disabilities would be acceptable in a prospective adoptee — what, in other words, did we think we could handle: H.I.V., hepatitis, blindness? We checked off a few mild problems that we knew could be swiftly corrected with proper medical care. As Matt had written on our application: “This will be our first child, and we feel we would need more experience to handle anything more serious.”
Now we faced surgeries, wheelchairs, colostomy bags. I envisioned our home in San Diego with ramps leading to the doors. I saw our lives as being utterly devoted to her care. How would we ever manage?
Yet how could we leave her? Had I given birth to a child with these conditions, I wouldn’t have left her in the hospital. Though a friend would later say, “Well, that’s different,” it wasn’t to me.
I pictured myself boarding the plane with some faceless replacement child and then explaining to friends and family that she wasn’t Natalie, that we had left Natalie in China because she was too damaged, that the deal had been a healthy baby and she wasn’t.
How would I face myself? How would I ever forget? I would always wonder what happened to Natalie.
I knew this was my test, my life’s worth distilled into a moment. I was shaking my head “No” before they finished explaining. We didn’t want another baby, I told them. We wanted our baby, the one sleeping right over there. “She’s our daughter,” I said. “We love her.”
Matt, who had been sitting on the bed, lifted his glasses, and, wiping the tears from his eyes, nodded in agreement.
Yet we had a long, fraught night ahead, wondering how we would possibly cope. I called my mother in tears and told her the news.
There was a long pause. “Oh, honey.”
I sobbed.
She waited until I’d caught my breath. “It would be O.K. if you came home without her.”
“Why are you saying that?”
“I just wanted to absolve you. What do you want to do?”
“I want to take my baby and get out of here,” I said
“Good,” my mother said. “Then that’s what you should do.”
In the morning, bleary-eyed and aching, we decided we would be happy with our decision. And we did feel happy. We told ourselves that excellent medical care might mitigate some of her worst afflictions. It was the best we could hope for.
But within two days of returning to San Diego — before we had even been able to take her to the pediatrician — things took yet another alarming turn.
While eating dinner in her highchair, Natalie had a seizure — her head fell forward then snapped back, her eyes rolled and her legs and arms shot out ramrod straight. I pulled her from the highchair, handed her to Matt and called 911.
When the paramedics arrived, Natalie was alert and stable, but then she suffered a second seizure in the emergency room. We told the doctors what we had learned in China, and they ordered a CT scan of her brain.
Hours later, one of the emergency room doctors pulled up a chair and said gravely, “You must know something is wrong with her brain, right?”
We stared at her. Something was wrong with her brain, too, in addition to everything else?
“Well,” she told us, “Natalie’s brain is atrophic.”
I fished into my purse for a pen as she compared Natalie’s condition to Down syndrome, saying that a loving home can make all the difference. It was clear, she added, that we had that kind of home.
She left us, and I cradled Natalie, who was knocked out from seizure medicine. Her mouth was open, and I leaned down, breathing in her sweet breath that smelled like soy formula.
Would we ever be able to speak to each other? Would she tell me her secrets? Laugh with me?
Whatever the case, I would love her and she would know it. And that would have to be enough. I thanked God we hadn’t left her.
She was admitted to the hospital, where we spent a fitful night at her bedside. In the morning, the chief of neurosurgery came in. When we asked him for news, he said, “It’s easier if I show you.”
In the radiology department screening room, pointing at the CT scan, he told us the emergency room doctor had erred; Natalie’s brain wasn’t atrophic. She was weak and had fallen behind developmentally, but she had hand-eye coordination and had watched him intently as he examined her. He’d need an M.R.I. for a better diagnosis. We asked him to take images of Natalie’s spine, too.
He returned with more remarkable news. The M.R.I. ruled out the brain syndromes he was worried about. And nothing was wrong with Natalie’s spine. She did not have spina bifida. She would not become paralyzed. He couldn’t believe anyone could make such a diagnosis from the poor quality of the Chinese CT film. He conceded there probably had been a tumor, and that would need to be monitored, but she might be fine. The next year would tell.
There would be other scares, more seizures and much physical therapy to teach her to sit, crawl and walk. She took her first steps one day on the beach at 21 months, her belly full of fish tacos.
NOW she is nearly 3, with thick brown hair, gleaming teeth and twinkling eyes. She takes swimming lessons, goes to day care and insists on wearing flowered sandals to dance. I say to her, “Ohhhh, Natalie,” and she answers, “Ohhhh, Mama.” And I blink back happy tears.
Sometimes when I’m rocking her to sleep, I lean down and breathe in her breath, which now smells of bubble-gum toothpaste and the dinner I cooked for her while she sat in her highchair singing to the dog. And I am amazed that this little girl is mine.
It’s tempting to think that our decision was validated by the fact that everything turned out O.K. But for me that’s not the point. Our decision was right because she was our daughter and we loved her. We would not have chosen the burdens we anticipated, and in fact we declared upfront our inability to handle such burdens. But we are stronger than we thought.

Elizabeth Fitzsimons, who lives in San Diego, is a reporter for The San Diego Union-Tribune.

Saturday, May 12, 2007

He’s Autistic, Not Five

Nat had an appointment yesterday morning with a pediatric ophthalmologist at the recommendation of his pediatrician. Our pediatrician is very dear to me. She is kind of a sister hen — being too young to be a mother hen — very thorough, always coming up with things I should have done to them. You can never get out of her office without a referral for something else in your hand. This is good and bad. On one hand, I feel like nothing about my children’s health gets overlooked. On the other hand, I feel like, enough with the extra appointments already!

I especially love the way she treats Nat. She seems completely at ease with him and also delighted with him, always impressed by his growth and development. She is this way with Max and Ben, too, but when people get Nat, it is an extra special gift to me. (I’ll let you all in on a big secret: he’s just a goofy, pain-in-the-ass teenager. He is difficult to figure out, but then again, so is my other goofy, not-a-pain-in-the-ass teenager. They are what they are, as Popeye would have said. And he should know: don’t you think his mumbly chit-chat was a bit familiar…? A bit self-stimulatory? Has anyone thought about cartoon characters who may have been autistic? Was Jughead an Aspie. for instance? You could make an argument that both Charlie Brown and Linus were autistic, the former with his difficulty understanding NT relationships, his perseveration over kicking a non-stable football; and Linus perhaps was a savant, with his ability to memorize long Bible passages as a kindergartener, his unusual instincts and Grandin-like connection with animals — he could pat birds on the head. And Lucy totally bullied them, the beeyotch. Where the hell were their parents, “wa-wa-wa-wa-wa-wa“?)

Where was I? Okay, the doctors. (shit, I just got coffee on Precious, my laptop, amazing what she will put up with) So Dr. R, the ped, told me I should take Nat to Dr. B, the eye specialist, to get his eyes checked. I didn’t question this; I do not know what an eye exam for a kid is like, and I admit I hardly ever get my own eyes checked. Ned calls me “Squinty.” But the eye docs always say I don’t really need them — yet! So why should I get them? I don’t really have crows’ feet yet —

Argh, tough to focus. But that’s good, because it means I’m happy and brimming with things to say. I am typing in my summer PJs on the screened porch, slurping perfect coffee, looking out at a rabbit who actually let me get within 5 feet of him to snap a few photos, and anticipating Mother’s Day and Dad’s 70th birthday. Going down this afternoon to see my fambly and celebrate, M, D, seeyster, kiddos.

And here is the greatest news: Nat seems so much his old self. He is talkative, smiley, and calm. He has been able to tell me things he doesn’t like, or would like, such as for me to keep the doors closed (this is a protracted back-and-forth we have, because I want the doors open in the spring and summer, and he feels that doors are best when they are closed. So I am trying to get him to adapt to open doors sometimes — Nat’s least favorite word, too wishy-washy — and me to adapt to closed doors more than I would like.) Why is he feeling okay again? Not entirely sure, but getting the Luvox out of his system is probably helping, as well as our renewed use of Social Stories, and our redoubled efforts to think ahead and let him in on what is going to happen, and to be sensitive to his likes and dislikes. As well as his own cycles (?) which are similar to mine. We are, as I’ve said before, very connected. He is very in tune with me.

(Just moved indoors to the window seat because I had to plug in and it got cloudy. Precious needs a new battery; I get like 45 minutes and then she totally peters out. Ben is playing Kingdom Hearts and Nat is watching. I hope it clears up because Ned and Max are going to Fenway Park with Ned’s Dad and stepmom at 1. I am getting us ready to go to Connecticut and I really want good weather for them and for us tomorrow. We’ll probably play wiffle ball and hide and seek. I already told Nat this in his social story, so we really have to do it!)

Ah yes, the pediatric ophthalmologist. Do you get the feeling that that is not what I was meant to write about today? But I want to say that sometimes well-meaning docs make things harder than they need to be. I took Nat to this specialist thinking that the eye exam would be something we need a special person to conduct, but it turned out that Nat didn’t need that at all.

First of all, I wrote a small description of what Nat could expect from the office visit. These days, with Nat being so routine-conscious, I now find that going back to social stories really helps him feel better about whatever he does. So I wrote stuff like, “The doctor will put drops in my eyes. They will feel funny but soon they will feel okay. It will not hurt.”

No eye drops! And the nurse had him read an eye chart, and he shouted out all the letters, first trying to make them into words, which was very sweet. (C A V he read, “cave!”) The nurse, of course, loved him.

Then the doc came in and opened a drawer of toys, (superheroes, little piggies, etc.) figuring this would engage Nat’s interest and she could examine his tracking ability, etc. But the thing is, he has never enjoyed toys, other than Floppy Bunny. She kept asking him questions about the toys, in a little-kid voice that must work well on her usual patients. But for Nat, the questions were a huge distraction and cause for anxiety. I didn’t know what she was after, so I didn’t interrupt. I liked the way she was gentle with him and I know he did, too.

Then she switched on a button which caused a mechanical elephant across the room to go crazy. This was to make him look far away. But Nat was startled. I thought, “Oh my God, she is in the Pinching Zone!” But Nat was fine. I was relieved when it was over, and I realized that we would have done much better just telling him to look here or look there, rather than relying on the childlike distractions that work for other children. She could have just as easily asked him to read a Shakespearean passage; he would have done it and she could have tracked his eyes that way. He is much more familiar and at ease with reading than at talking about action figures.

I felt a little pissed, I must admit. I know she is a kind, skilled doctor, and I appreciate how she and the pediatrician were trying to help Nat. But I feel that there was no real cause to treat Nat with kid gloves, so to speak just because he is autistic. All they had to do was tell us what to expect and what they were looking for, and we would have done it. He’s autistic, not five. And he and I are a pretty good team most of the time.

Thursday, May 10, 2007

Dancing in the Moonlight

Workin’ on the night moves
Tryin’ to lose them awkward [midlife] blues
Workin’ on the night moves

In the summertime

Sweet summertime.
–Bob Seger, with a little help from me

A new experience tonight. I wanted to extend the day, it was just so beautiful. I needed to be outside. I craved that warm night air. And I wanted to dance. The zills were in my head again. It’s been a while since they were really in my head.

So Ned said I should dance outside. Isn’t that kinda crazy? I asked. No, it’s not, said Ned. He keeps urging me to find what’s fun and just do it. What will the neighbors think? I said. What will they think? he asked. Who cares? I could feel it surging up inside me, a forbidden thing that I really wanted to do, like skinny dipping. I’ve only done that a few times, and that is not enough in one lifetime.

So I danced outside, under the stars. I took a pink veil and a red hipscarf, and tied it around my shorts. I had my zills, and the iPod, and just let the music move me. Sometimes a breeze would lift my veil and carry it behind me. There were faint scents of blossoms because the night air was warm and moist. I was flying, spinning, swaying, and my fingers were clicking away like little crickets. I felt light and lifted, like the air itself, dark and mysterious. I felt like a gypsy girl, wild and free. Breathless, exhilarated, awed. Happy.

Happiness is Right Around The Corner

Here is my column from this week’s Brookline Tab.

Opinion: Happiness is right around the corner

By Susan Senator/Edge of Town
GateHouse News Service

I have come to realize that I suffer from occasional bouts of depression. Sometimes it takes the form of anxiety; other times, a great gray “blah” settles over me and sucks every last bit of energy from my body.

Apart from dealing with this condition through the traditional means of therapy, etc., I have found that there are other ways I can feel happier fairly quickly. There are actually a few special places I can go right here in town that act “just like a witamin,” as my Polish-Jewish grandmother used to say. Places you go, not just for a purpose, but for the singular experience they offer.

My number-one happy spot in Brookline is Family Restaurant in the Village, for lunch, with a friend, on a weekday. The aptly named Family Restaurant makes me feel like I belong here. From the handsome, smiling fellow at the cash register to the skilled-but-besieged cook (“Number 57, please!”), the staff at this Turkish restaurant are personable personalities.

And Family is right next to Town Hall, so it is a mecca for town workers and politicos. It is the spot to see and be seen in Brookline (did you even know we had such a thing here?). Family is where you go if you are meeting with a beloved/controversial selectman-type running for reelection, seeking your endorsement. In that case, I suggest you stay away from the eggs, only because they may wind up on your face. Chicken is always the best thing to order, because if, indeed, we are what we eat, then he will understand if you decide that you are not yet taking any kind of stand in the upcoming election. And the grilled chicken at Family, tossed generously across a Greek salad, melts in one’s mouth, along with campaign promises for Proposition 2 ½ overrides we have yet to experience.

But seriously, where else would you be invited to sit down and have a glass of tea and a plate of cookies (“on the home”) while you wait to pick up your dinner? I can see my other, Russian-Jewish grandmother, owner of Adelman’s Delicatessen in Brooklyn, nodding approvingly of their good business sense and their manners.

Another favorite spot for me is — gasp! — a chain. Peet’s Coffee. It may be a chain, but it is still very Brookline, because it is filled with an eclectic mixture of people, from the tattooed and pierced barristas to the new moms wrestling with bulky strollers and sippy cups, to the elderly couples sipping tea. Peet’s feels like a very real hangout, with its tall, elegant windows, battered tables and scattered assortment of newspapers. I like to bring my laptop and write in the sunny window, watching the passersby. Invariably I spot a friend, who comes in to say hi. And of course, there’s the coffee: Its smoky, earthy flavors are unique and flavorful enough to please me, even in my blackest moments.

I never go to Peet’s without then going a few doors down to Booksmith. With brainy, gregarious help peering down from the registers and chairs in the aisles so you can settle in for as long as you want (as long as your cell is turned off), Booksmith feels like a place to go and be, not just a store for errands. And that kind of purposeful, clublike atmosphere is what I look for when I am feeling listless and dull.

In the early evening, when all my boys are home and we’re all together again, sometimes the only thing we all feel like doing is going to Larz Anderson Park. We drive all the way to the top and stand there, looking down at Boston in the distance. My little guy plays pirates in all the abandoned stone structures (I get to be the mermaid), my autistic son can wander and chit chat to himself to his heart’s content, and my middle, teenaged boy can sit on the stone wall and talk Geek with my husband.

I watch all of them, my “millions,” as my grandmother called them, and I then find it very easy to realize that happiness is actually kind of simple, and close at hand. Or, as another famous depressed person once said in her most famous movie, “The Wizard of Oz,” “If I ever go looking for my heart’s desire again, I’ll never go looking any further than my own back yard.”

Or at least Coolidge Corner.

My Millions:

Confusion Rains

The light outside is pale green because of all of the green everywhere. So much so that the bits of light blue sky that filter through the branches almost clash with it, to my eyes. The sunlight lately seems eerily bright, absurdly strong. More and more I wonder if this is my perception, or does everyone notice this. Perception is a strange, subjective thing. We never know just what it is like for another person.

This difficult phase with Nat sheds new light on former, similar phases. I feel very certain now that the last time we were “under siege” this much was due to the SSRI he was taking, and the school program’s lack of response to his escalating activation. Back then Nat was on Zoloft; now he has been on Luvox. On the one hand, these SSRIs create more neural pathways and connect information together in his brain, helping him take in more information in a way that is more useful for him (or so I imagine, based on conversations with his psychpharmocologist). On the other hand, Nat is still Nat, and he still has an autistic perception of stimuli. I do not say this pejoratively; I mean that his brain makeup is ultimately different from mine and perhaps even if he can take more information in, he may not know how to process it or make sense of it. I don’t know what he does with it. He does not know what to do sometimes with all the information he is taking in — or so we believe — and he becomes frustrated and reverts to screaming and arm-biting.

The bottom line is, I don’t know why. I don’t know what it is like for Nat and neither does anyone else. We experiment but we don’t know. And the doctor thinks now that the Luvox is “overactivating” Nat. So we have taken him off it. I feel very chastened by this. Even though we were being so cautious, there was a downside and Nat and the rest of us have paid the price.

Up until yesterday morning, when Nat had a meltdown while Max was in charge (we were at Ben’s parent-teacher conference at Ben’s school), I was willing to put up with Nat’s SSRI-driven outbursts because the positive side was that he was more engaged with all of us. But now I feel: at what cost? It was terrifying for Max, it has been terrifying for Ben, and now I wonder if it has been terrifying for Nat. Ouch, ouch, ouch. I can’t imagine his pain, feeling so overwhelmed and out of control that he would scream like that and bite himself. Having no way of getting whatever it is to stop.

Sometimes even the clear, bright sunlight is just too much for our eyes. And it does make me wonder how if you tamper too much with the way something is naturally — like the environment or someone’s neurological or chemical makeup — you sometimes end up worse off.

Monday, May 7, 2007

Running on Full

Today the glory of life shone upon her
She did not know how or why
She decided to take a run in his honor
To move between flashes of wind and sky

He could not run today, because of his eyes
Not his legs. He takes such good care
But you can’t control everything, he starts to realize
And at 70, you don’t even dare.

She wants to ask him, are you okay. Are you scared?
It’s not something you really can do.
So she will run with him sometime, a Cape morning shared
The hot sun, the flat road, and they two.

Sunday, May 6, 2007

It All Worked Out!

It all went well from start to finish. The moonbounce arrived when I came back from the gym, around 10, and it looked great, a huge monument to sports, with every kind of ball perched on top, sports cartoons decorating the sides, and a big inflatable scoreboard (home was winning, of course). Perfect for our family, eh? But Ben said, “Well the sports thing will attract more kids, though.” Little B!

And so it did. All told, we had around 10 boys at the party. The sun did come out, although it gave no warmth at all. But that did not matter: there was plenty of warmth from all the happy people there.

Tabblo: A Great Belated Birthday Party

Lovaas-The Refrigerator Theoretician

You don’t need a weatherman
To know which way the wind blows.
–BD, (which, happily, also stands for “Bellydance.” )

This is why I don’t pay attention to weathermen.
All week I checked the little pun-laden upper right hand corner of the Globe to “make sure” that Sunday, the day of B’s moonbounce party, would be sunny. All week: “Sunday, mostly sunny, cooler.” Cooler sucks, but mostly sunny, Yay! Anyway, I never really pay attention to weather reports because I grew up in New England (and on a deeper level I don’t feel that anything really is what it says or stays the same, though I badly want it to). “You don’t like the weather? Wait five minutes! Hee Hee.” PUNCH

Oh Little B!!!! Can’t you get a break???? What is with these huge, wrath-of-God, Dorothy clouds???

Yesterday the morning was another difficult one for Nat (and Ben). At around 11 four of us wanted to be either cutting a keyblade for Max’s Kingdom Hearts costume, or pulling out the myriad maple seedlings that bloomed overnight in the yard. One of us wanted everyone inside, eating lunch, because that was “next,” the ambiguous kind of next. So Nat spent a half hour bellowing/howling/screaming/stomping and basically scaring the hell out of Ben. I kept saying, “Ben, it’s okay! He’s just loud. I am here. You can still do what you want,” but Ben wasn’t buying it. He looked at me and then ran down the basement stairs, where he then yelled at Max and Ned to come inside because, “Nat’s flipping out again!”

Oy, God.

I keep thinking, “WWLD?” What Would Lovaas Do? Because that is my basic training. I do not believe that tantrums should be rewarded. I understand and believe with all my heart that you must look for positive occurrences and reward those. You reward when the not-happening of bad “undesirable” things is happening.

And this last month I find myself also thinking, “Lovaas didn’t really know shit.” Did he have children of his own, or was he simply an ABA theoretician, because let me tell you, it is easy enough to come up with a theory based on observation. You just put your heart in a freezer and then you carry on. You know what? I think Lovaas and the fucking ABA-ists are the original refrigerator people.

The real question is, WWSD? What would Solomon do? Because only he could solve this, although, come to think of it, he was the Brain who came up with the solution of splitting the baby in half — but that was taking a gamble that the true mother would make herself known in time. Brilliant, but scary.

I’m tired of scary. I just don’t understand what has gotten into Nat or how to help him. It doesn’t help that at the Team meeting one of the evaluators came up with age levels for Nat, according to how he tests, and those very very young numbers keep rattling around in my head. What does it mean, that he’s such-and-such age really? Is that true? Or is it only partly true, and totally a lie in other ways?

I think evaluators, I.Q. people, etc., are like weathermen, actually. They look at their data from their safe distance and they apply some set of rules and then they come up with their predictions/conclusions. And then when real-life people hear about it, they feel good/bad depending on those words. They make plans, or they scrap plans. They maybe even convey their sadness to their children subconsciously.


So things were looking pretty bleak for the Senator-Batchelder household yesterday around lunchtime, but then, somehow, the son really came out. I took Nat outside, spontaneously, to a little neighborhood party, a treasure hunt being run by one of B’s best friends and his family. Nat wanted to go, and went willingly. He was smiling softly the whole time, interacting with people or being quiet/stimmy, his old beautiful self. I hope Ben noticed and was soothed by it, but I don’t know. I was.

And then later, Nat napped and I weeded and planted. (Some stuff is really coming up, like my peonies from my neighbor’s garden that stalled last year, actually have buds, so come on, ants!) My wisteria is wisterical with blooms about to burst open (it is a huge arbor on the street-side of the house). My apple tree looks like a strawberry sundae.

Then I cooked a brisket. I don’t know why, probably because I’m reading Julie and Julia, about the woman who cooked through the entire Mastering the Art of French Cooking. There’s lots of cuts of beef mentioned, plus I have a lot of herbs growing on the playroom window. I called Natty in and showed him how to peel potatoes which he did with total enthusiasm and no mishaps. Could a 3.7 year old do that? I think not.

It was, needless to say, delicious, if a little light on fat (I had bought a single brisket because it looked less disgusting than the double, fat-filled kind).

Went to bed completely satisfied with my family and my cooking and then woke up to this drek. Well, the moonbounce is coming at 10 a.m. and Little Beastie’s belated party is happening, rain or shine. We’ll bounce and we’ll eat and drink however we can. Because real life includes storm clouds and unsolvable tantrum dilemmas and playing by ear and by heart. Families are the real practitioners and let me tell you, we need better tools than balloons, radar, percentages, and M&Ms;.

Friday, May 4, 2007

Love is a Battlefield

You didn’t know it, you didn’t think it could be done
In the final end he won the wars
After losing
Every battle.
–Bob Dylan, Idiot Wind

You know when people say, “…Then the terrorists will have won,” they mean that we should not be stopped by our fears of attack, we should not stay cowering in our homes just because of the new threat of terrorism. We should, instead, live our lives but perhaps with a bit more of a sense of the reality of the preciousness and possible brevity of life.

This phrase ran through my head, uncontrollably, as I returned to my driveway with Nat and Ben in the car, my plan to go to the track in utter shambles. Nat was bellowing/howling/shrieking because I suppose he did not want to go, because I sprung it on him, because it is spring and the lighting is intense and beautiful, because his meds are not quite right, because he wanted to just lie around the house staring into space, because because because because because….

I had just explained that I can’t always give into Nat’s tantrums because then he would never grow in his experiences, and he would learn that this is the way to get out of doing anything he didn’t want to do.

But Nat was screaming his head off and Ben suddenly burst into tears, saying, “Can’t you just give into him? Can’t you just give in?”

If I give in, I am reinforcing that lesson, I thought. The terrorists will have won.

But Ben was crying! How could I place the value of Nat’s lesson learned over Ben’s pain? So I turned around and we went back in the house; I felt like I’d been kicked in the ass. I was seething with my impotence.

I had a small, mean pyrrhic victory, where I insisted that Nat go in slowly and quietly, and made him stop and help me with the laundry. I watched with twisted, ugly satisfaction as he obeyed my orders with shaky deference.

After we folded the laundry together, I told him to go find something to do. I was finished with him. I was still angry, and my heart hurt, too. I asked Ben to come inside my bedroom. I said, “I’m sorry, Ben.”
“Why? Because you let him live?”
I swallowed hard. “Uh, no, because I let him scare you.”
“You’re probably angry him, at me? At God? At autism?”
Ben nodded.
“So am I.”

We sat there for another moment, and then he said, “Okay then.” And he started talking about Kingdom Hearts, how he was winning, and was even doing better than Max.

Nat is now perfectly calm. I’m going to try again soon, but maybe without Ben in the car. Some wars are too important to lose.

Talking to Autism Speaks

I have been asked to be on the Autism Speaks Subcommittee on Adolescent and Young Adult Issues. From what it sounds like it covers, I believe this is a good starting point for me in the world of adult autism advocacy. I will learn more about what this particular subcommittee does, at a meeting on Tuesday, but the person who first reached out to me about this is someone I really trust and regard very highly. It is my hope that if I do work with Autism Speaks, that I can help make them understand about neurodiversity and the need to have autistic people on their boards and subcommittees. The Autism Speaks tagline is: “Autism Speaks, It’s Time We Listen.” I already know that people with autism “speak” in their own ways, it’s just that many of us still don’t know how to listen, but I believe we want to. I hope that their “we” includes the organization itself. That won’t stop me from joining; I have confidence that I can make a difference in some people’s minds in this regard.

Thursday, May 3, 2007

My Downs and Ups

My ups, my ups, my lovely lady ups.
–Black-Eyed Peas (?)

I took a one-day hiatus from sharing my blog with all of you. Yesterday began horribly, and it led to my decision to take myself back from the Public I. But in doing so, I forgot just how many good-hearted people there are out there who are compassionate and help me just as much as they claim I help them.

I am going to summarize some of what’s going on:
1) An excellent IEP meeting on Monday, where we (the team) did a lot of working out details of Nat’s coming year in terms of his comprehensive development (vocational training, communication work, leisure/fun repetoire). Everyone seemed really to understand Nat, and to appreciate his gifts. There were many specific examples as well as clinical three-year evaluations of Nat’s growth. To fully understand how far he has come in just a few years — this made me very happy. I now feel that we have a vision for the next 5 years, and a bit of a path has been cut for us to follow.

However, as often happens when something wonderful occurs regarding Nat, I became very melancholy over the next few days. I realized once again just how much psychological energy it takes to do what I need to do for him. Not just the meetings and the phone calls and the delicate negotiating with others; there is also the weight of worry about him, the lifelong sense of his dependence on us. The feeling that he is such an innocent, as compared to the complex world he lives in, and the need to be sure he can either protect himself (whether from the errant car that runs the light even though Nat sees that the sign says he can “walk,” or from the indifferent professional whose lack of connection cuts off an avenue of potential growth and happiness) or be protected.

2) Max wants to get dredlocks. He is 15 and it is getting harder and harder for me to tell him he can’t do things to his appearance. I can give him my opinion, and try to steer him away from what I think are unfortunate choices. I save the fights for really important stuff, like morality, grades, safe sex, no drugs or alcohol.

3) Spring is in high gear; I took my first 10 mile bike ride today. Heavenly. The new leaves are out on all the trees (the lighter green, temporary ones that fall off and are replaced by darker ones). My garden is colored like a box of Jordan Almonds. Too bad you can’t eat tulips!

4) Ben’s birthday party is Sunday. We have rented a moonbounce with a slide. We are trying to figure out what the cake should be…

Tuesday, May 1, 2007

Sisters in The City

Laura just sent me this Tabblo, made from the pics she took in NYC! There might be some in jokes that no one else will get, and which are far too esoteric and Senator-family trivia to explain! Just enjoy…

Tabblo: Sisters in NYC

Gorgeous room at the Loews regency
See my Tabblo>

New York State of Mind

…Don’t care if it’s Chinatown, or on Riverside
I don’t have any reasons, I’ve left them all behind.
I’m in a New York state of mind.
–Billy Joel

My time in New York was a blast, a total, no-holds-barred blast. There is no one on earth I can laugh with like my sister Laura. And beyond that, we value many of the same things, such as intense relationships, our marriages, our children’s development, and our parents. And these are what we talked about for our 27 hours together, as we walked first from Penn Station all the way to our hotel (carrying our overnight bags and pocketbooks, me in my pointy black suede boots) which was the Loew’s Regency on 61st and Park. On the way, we headed up Fashion Avenue and stumbled upon store after store of sewing goods.

We went into one of the sewing stores and found rows and rows of appliques in all different colors, just like the beaded kind you find on bellydance costumes. I have yet to find such a treasure trove in Boston. I found a pair that exactly match my favorite bellydance costume, the hot pink Hanan. My idea was to sew these appliques onto the cups for a tad more coverage. This costume is the one that is the highest caliber of craftsmanship and it fits and flatters the most of my three costumes, even more than my custom Safti, which I still love, but… So when I found this trim I realized I had a solution for making the perfect costume. And then I began thinking regretfully about my decision not to perform in my class recital…

We dumped our stuff and I changed into sneakers (yes, me, in sneakers, in public! But guess what? Sneakers and skinny jeans are de rigeur on the East Side these days.) Then we went right back out and found a pizza place. Generic New York pizza, which is several cuts above the best pizza you can get anywhere else. Big, wide slices with soft thin crust, just enough sauce, and lots of cheese. We did not talk much as we gulped down that manna from heaven. Then we took the subway down to Union Square and walked some more, to the East Village. The shops there are great! Not overly expensive like Soho or other parts of the Village. And no chains, either.

Bought a couple of interesting items; I found a frilly little white jacket with just one huge button, at a little shop called An Ren, which was filled with little jackets that were totally delightful. Then, next door, was a store just made for my men: Giant Robot, with funny Japanese animation items (a set of stickers that said, “Hello Kill You!” and Happy Mushroom, so Japanese and funny and bizarre). The whole time we were picking things up, laughing, talking about our kids or our husbands, like two bodies but one mind.

When we got tired we went to a delightful little restaurant called The Cloisters, which had stained glass windows and a garden with outdoor dining hidden in the back. We had lattes and dessert.

We just kept walking, meandering, wasting time, and realized suddenly that we never do this. In our complicated lives back home, we are always checking our watches, feeling whatever lovely moment we are in dissolve as the family obligations seep into our consciousness. But this time, we had the whole day to ourselves, with nowhere to go, except a very late dinner reservation at Tagine Dining Gallery in Hell’s Kitchen.

Eventually we took the #4 train back uptown and luxuriated in our room. There was a huge marble tub and a separate glass enclosed shower. She went into the shower, I drew a bath. We talked and joked (I will spare you our raunchy sense of humor) while we relaxed. Then we got dressed for dinner.

Walked into the restaurant and was not impressed. It did not look that different from the Middle East, not that there’s anything wrong with that, but I had in mind something sumptuous. Still, it was friendly and the band was good, so we ordered drinks and settled in. The first dancer came out at around 9. She was not that good, but she did go to every table and got someone to dance with her. So I danced a lot that night. The second dancer was much more accomplished, and beautiful, too, with long black hair, pale skin, and an antique beaded top with a royal blue skirt and lots of eye glitter. I danced with her and it was a delight. Laura danced with her, too!

In between the dancers’ shows, I made a request of the band: Aziza, a song I love. The owner came over to me and drew me out onto the dance floor. I did some really good stuff: camels in a circle, hip drops, mayas. I could really think and figure out what I wanted to do. Then I got too bold, and did a spin, and knocked over my empty pomegranite martini glass. Oh well. They could have cared less, though! What great people. Everyone applauded when I finished.

(Right then I realized that I really had to do my recital in May. I had withdrawn from the class because it was just so grueling and I truly felt like the worst one in there. But it felt like the wrong decision, once made, and so today I asked my teacher if it was too late to rejoin. Of course she welcomed me back.)

By the time we sunk into bed we were crazy tired. But we kept making each other laugh until finally we just fell asleep, and slept until around 7.

Next day, I was aching from all the walking, but we were determined to do it again. This time we went to Central Park and then the East Village, and then a delicious brunch, and then back to the room for more relaxing before the trains. We packed up and took our bags and walked back to Penn Station the entire way, stopping here and there (once at the new Apple Store for Max; I bought him iPod Nano socks.) We discussed what we get Dad for his 70th birthday (May 14), and made some decisions about that.

We were tired at Penn Station, and reluctant to leave each other. A lot of hugging and kissing. A total whirlwind visit, of love, fun, and laughter. This is corny, maybe, but I really thank God for giving me a sister like that. Stay tuned for the Tabblo…

Cat Woman

What I really want, really really want, is a cat. I know exactly how to take care of them. They are the perfect level of maintenance for me. And they really have personalities. Mine used to nap with me, curled up next to my pregnant (with Nat) belly.

Truly, I can’t imagine a dog. I can less imagine a bunny. And the lesser pets are just smelly work. I want a cat. I love all black cats, where you can’t see anything but their eyes.I hate the siamese ones or the hairless ones, so don’t even bother suggesting it. I have a cat allergy and that’s why I don’t have a cat. I did not always have this allergy, not when I had BallyCat, 19 years ago. But now, I definitely do. I don’t know if there’s a way to overcome cat allergies. But that’s what I would do. Maybe I’ll email my doc and see if there’s some way to get me past the cat allergies?

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