Susan Senator

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?

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!”

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.

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.

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.

Is there anything worse than worrying about your child’s safety and wellbeing? I don’t think so. Tonight I am getting Nat out of the shower, trying to shepherd Ben in, when I notice red streaks across Nat’s left shoulder, onto his chest, in the configuration of a hand. Cold claws in my stomach, twist of dread, then, “Nat! What is this?”

“Yes,” he says, which is how he answers any question. “Mommy will go away.”
“No, Nat, I want to know what is this? How did this happen?”
He can’t answer these kinds of open-ended questions. He thinks I know the answer, and says, “Yes.” And then, “Mommy go away.”
I study the welts and want to cry. He knows this. He looks alarmed. He thinks he’s in trouble. He can’t stand my histrionics. But I want to pull him to me and make those ugly marks go away. I can no more pull him to me than I can make him talk to me. It would be inappropriate, (he is naked, holding a towel) and he would not like it: he has already told me twice to leave him alone.

Where did these marks come from? Did someone do this to him, or did he do it to himself? He is not beyond self-injurious behavior. He used to bite his arm all the time; thank God he almost never does that now. So why the scratches? No incident reports in the notebook, no phone call about today.

Sometimes I wonder about his bus drivers. Would they hurt him? But then, would he go smiling into the bus if they did?

In fact, he smiles so much these days, I have to figure the most obvious: he did it to himself. Ned takes a look at it. He looks at me, and shrugs. Dry skin, maybe? I sigh, and relief starts to crackle through me, as I realize this is probably the cause. “Okay, Nat, do you want some lotion on it?”

“Yes,” he says and eagerly goes into the bathroom with me, watching, enthralled as I smeared Aquifor on his skin. I rub the gloppy ointment in, hoping to soothe whatever it is and whatever caused it, choked by my inadequacy, and all of the pent-up love I feel for this child of mine that I can never quite express to him.

When I was a little girl, we had “extras.” An Extra was something that was kind of a bonus, that didn’t count, but that someone wanted to give to you anyway. It could have been an extra birthday present but one that they were not quite sure of for some reason; perhaps it was something they had found, rather than bought, or something that they knew might not be exactly right but the impulse to give it was stronger than its potential to displease. They are little splurges that you could not help getting, but they are not the main attraction. Yet they might end up being the most memorable gift of the day.

I kept the tradition going, not even consciously, when I gave Max the Sports Illustrated Swimsuit Issue for his birthday, along with several other wrapped presents (tee shirts, books, and I-Tunes gift cards). The Swimsuit Issue was a joke; Max had been asked to write an essay about sports, and he hates sports. This was to inspire him, to show him that even sports has a positive side. (He took the magazine with bright red cheeks and a huge grin and I never saw it since; and believe me, Ned has asked to see it many, many times.)

I also gave Ben an Extra on his birthday, a tiny Maggie Simpson doll, because I know Ben thinks Maggie is really cute. Anything that brings out the soft side in Benj is something to be pursued, so I handed him the figurine loosely wrapped and called it an “extra,” so that he would not be insulted about being given a doll for his birthday.

Lately I have found that extras are not only found on the top of a pile of birthday presents. It is quite possible that there are people in ones life who are also Extras. In fact, maybe all people one loves are Extras, in that we kind of stumble upon them and may or may not be swept away by what they offer. But as we love them longer, they become more like Givens. But even they are not Given, when you think about it. Parents of some sort are a Given, but parents may run off, parents disconnect from you, and of course, they eventually die. But in general, in my mind, family is kind of the Given, the central gift (mom, dad, siblings; then, when you are older, spouse and children) and friends are the Extras.

Or is it the other way around? I was raised to think the former, but as I get older, I want friends who are Givens. And for my spouse to be Extra. But Ned feels to me like the all-time Given, but I also understand the very real fact that husbands and wives fall out of love and leave each other. And, frankly, things are far more exciting when I suddenly view Ned as an Other/Extra, in relief, lifted out of the daily routine surroundings. I find when he talks about work, when he really gets into describing something he is thinking about, I feel myself move back and see him clearly as a man in the world. I see him how others see him (and it is a huge turn-on). It is then that he is like an Extra, rather than a Given.

Children move in an out of Extra status. When they are first born, they are Extras. They are a wonder to behold, something you can’t quite believe you actuallly have. Then, as you get used to them, they are (or seem) more Given. You feel you can take them for granted. When we first brought Nat home from the hospital, we drove at a speed of 20 miles per hour. Ned said, “I can’t imagine ever going fast again.” Nat was that much of a precious bundle.

Now, of course, we speed and drive crappy like everyone else, with our kids in the car. It is not because we love them less. But they become more Givens, more just a part of life, a part of us. But every now and then, when I focus on one of them, I really connect with them and feel how special they are. As my boys grow up and become more “real people,” strangers, even, I see them as Extras more frequently, these people in my life whom I don’t always know that well.

I am plagued by this model. There are very few friends who for me are Givens. I can’t help but see some people as more tenuous, more special, less predictable, than my family. Is that the best way to approach friendship? Shouldn’t we be able to take friends for granted a little bit, too, like family? Shouldn’t family members be viewed as Extras more often? Do I have this all backwards? The Libra in me would like a better balance: to be able to lift my family into Extra status more often, and for friends to feel more like Givens. I have one friend in particular, who feels more and more like an Extra, even though he tells me he is a Given. I don’t understand my discomfort in this situation, and I would like to.

But maybe that is the nature of things. Maybe that is what friends really are; they are little extra gifts that you get, that you sometimes don’t even recognize as such at first. You can’t really predict how great they are going to turn out when you first come upon them, and you don’t know how long they are going to work for you (or you for them). It is a source of excitement but also of anxiety.

As I write this, I find I would like a new model.

Why are there happy days and horrible days? Why are some people happy and others, not? What are the ingredients to happiness?

Maybe it starts with what you believe happiness is. To me, happiness is both short- and long-term. Short-term happiness is being immersed in the moment, giving in to the pleasure around you, feeling anxiety-free, speaking freely the thoughts that bubble up and connecting with the people you’re with.
But long-term happiness is also a giving-in, or perhaps more of a giving up, a letting-go. Long-term happiness is about contentment with most of what your life is, what I used to scoff at as “settling for mediocrity” when I was younger and (even more) demanding. Before I had Nat, I believed that all happiness was about the total sensory overload I described above, a connected intensity with those around me that never broke. I used to demand that of all my relationships, and of course not that many survived, or they had to change. I had to change. My experience with Nat was one thing that taught me that obvious intense sensory connection is not necessary to everyone’s happiness. Happiness can be a total being unto oneself as well. I also think that surroundings and mood have an impact on one’s happiness. I tend to be happier in warmer weather (although I have had a stunningly happy winter this year, probably because of being so involved with the book tour and newfound success). Yesterday was a warm, beautiful day, almost a summer’s day, with a changeable sky that went from light blue to purply gray at times, and burst open with showers, and cleared just as quickly. We could all be outside without even thinking about it, without considering coats, or socks. So sometimes happiness is small, close-at-hand, simple and straightforward.

But there was something else, I think, that signalled to me, to us, that this was going to be a day of sweeping happiness. Maybe it was because we all feared rain but it stayed away until much later. So the happiness was feeling like we’d all gotten away with something. Maybe it was because all there was to do was jump in the moonbounce and entertain little kids and their parents, so it was about being free from work.

It was also about the five of us jumping together, all of us children for a while, having pure physical fun. It was a day for drinking wine outdoors and eating all the birthday cake you possibly could. A huge bee got inside the slide and everytime I tried to kill it with my shoe, I would fall down the slide. One kid at the birthday got a nosebleed, another had the wind knocked out of him going down the slide. Another kid drank like three juiceboxes in a row. Little boy bodies were lumped together, head over heels, little dirty feet in faces. The sun blared, the moonbounce listed. I jumped so hard I heard it pop beneath my feet, which made us all laugh. Everyone was sweaty and yelling, including me. But it was bigger than that, I know it was, and I can’t grab onto it. It was a day of profoundly sweet sensory overload (for me) and at the same time, of serene peace (for all of us). At any rate, as Mammie said in Gone With the Wind when Bonnie Blue Butler was born, “It sho is [was] a happy day.”

I want to post this not because I’m a pretentious a****** (I admit, it’s a possibility), but because I truly always think about Chaucer’s Prologue to the Canterbury Tales this time of year. This is because when I was a freshman in college, I took a class where the prof made us memorize this Prologue and he exhorted us to recite it every spring! So I still do!

Professor Ogden taught us that, as strange and foreign as the Middle English appears at first, if you read it aloud and pronounce every letter in the word, you get a sense of what each word is and you can feel what each line means, even if you don’t understand it word for word. It is really pretty simple, a description of April’s showers, and how they satisfy each vine, creating a flower; and the sweet breath of the wind, the new plants, and how Aries is halfway run; and the best line: how birds sleep with open eyes this time of year because their hearts are so full.

1) L’Oreal sunless tanning goop – always gives me just the right color and dries fast
2) My 10-mile bikeride through Chestnut Hill – not congested, ends by Starbucks
3) My writers’ group – they understand the highs and lows of this job, they’re funny, and they’re fabulous
4) A great flirtation – oooh, baby (sorry, cannot disclose)
5) Cadbury chocolate creme egg – when I allow myself this, it is the best food on earth, with “real” egg yolk inside made of gushy sweet vanilla cream. A mouth of delight
6) One perfect glass of wine – to soften my head a little bit
7) Getting flowers – any flowers, but the best are pink roses and blue delphinium…it’s been too long…
8) Earth, Wind, and Fire’s Reasons – one of the sexiest songs out there
9) When Ben gets to play with Chris – always works out, Chris is the greatest, most easy-going kid and lives right around the block.
10) Having Max babysit – he is so conscientious, so competent, sweet, and his fee is less than our other sitters.

The other night I gave a reading near New Haven, CT (drove four hours and sold only two books, half the audience was my family, I’m still exhausted, but okay, never mind, still a good conversation with the people there…). At one point, a woman in the audience started talking about J-Mac, and she made an interesting point. She wondered why everyone was so surprised that a kid on the autism spectrum would be able to be so focused and in the zone so that he could shoot so many baskets in a row like that. “It’s a trait of ASD,” she said, smiling. “People are surprised because they are not used to thinking of autistic traits as being beneficial, but if this kid was in the zone, it’s because he is probably often in the zone!” I laughed because I realized she was probably right. One excellent aspect of having autism is the gift of profound focus. I know I wish I had more of it.

It got me thinking about Nat and his recent affinity for basketball, particularly after I received an email from Dave, the stepdad of a kid on Nat’s Special Olympics basketball team. Dave had recently invited Ned and Nat to play basketball with him and Philip once the season ended, and a few weeks ago, they went. I wrote an essay about the whole experience, which I am still trying to publish, so I cannot yet blog it, but here is what Dave had to say about the day (I hope he doesn’t mind that I am quoting from his email, which brought me to tears, and had Ned saying enthusiastically, “Dave is such a good guy!”):

I have a few memories from that day that I’ll never forget. As soon as Nat came out of the house, walked up and surpised me by saying, “Hi, Dave” (He might have actually said ‘David’ — but I was still stuck on the fact that he greeted me!) I knew at that point that he really wanted to play. I was also touched that he called me by my name.

A few other high points / surprises for me:
• After he took a few shots, I would ask for a “high five!” which for which he would offer a respectable hand smack, but after he got warmed up and started hitting a few mid-range baskets, he would give me honest-to-goodness high fives with some power to them.
• His hand position on the ball forced his shots to fly too low. It seemed that he needed to give his shots more lift, but I couldn’t figure out how to show him what to do. Finally, I realized that if he only used one hand, he would be forced place his hand under the ball for support. This position is exactly what I though he needed to give his shot more arc. Sure enough, on the first try he bounced the ball high off the glass and into the net… using only one hand!
• Later, Nat got a little winded and sat down for a few minutes. While he rested, Ned and I were chasing Phil around. After getting a bit winded myself, I came over to the sidelines and told Nat, “Ok, my turn to rest. Get up and take my place.” Without hesitation, he lept up and started shooting again.
• Watching Phil try to block Nat’s shots, and seeing Nat make adjustments to get them over Phil’s reach. A little defensive pressure made a big difference in Nat’s activity.
• At the very end when everyone was just about finshed, I was impressed how Nat would go after his missed shot and instead of picking up the ball with his hands, he would roll the ball with hist foot. Just when I expected him to let the ball roll away, he would make a swift, and accurate motion with his foot, bring the ball to a stop, and then, as if pondering his next move, would rock the ball under his foot.

I do believe that not enough was made of the possibility that J-Mac’s ability was directly linked to autistic focus. But more than that, I think, after reading this, that it is not necessarily about basketball or even focus. I think the success of Nat and J-Mac at this particular sport is all about the favorable attention they got from the people they were working with directly. Just enough, and just the right kind of attention. A guy-kind of attention, not too touchy-feely, just “Hey, dude, let’s play!” and then, “Hey, dude, awesome job!”

I have been having a horrible day, one of my worst in a while. Still having trouble with one particular friend (INF) and I still care too much merely to let it go. But I think I have done everything I can to make things better in that regard, and now it is up to INF to figure out how to make things work. I have kind of drawn a line in the sand. I had to, to protect myself. I kept getting hurt.

I had posted a blog entry that read “Top Ten Reasons My Life Sucks” but I have since taken it down. My life doesn’t suck; some things about today did.

Through all this, this horrible, cruelly beautiful day (68 degrees and sunny), Ned has been in touch with me — in his quiet way. Through I.M: “I Love You,” he wrote at one point. Then, on the phone, 6p.m: “Coming home. We going out?We going to have fun?”
“I’ll try,” I said. We had decided to go out to dinner once we realized we did not have to attend a certain school function.

So now, I’m going to put some chicken nuggets up for the boys and put on some makeup and cover up these damned puffy eyes. I’m going to get dressed up and go out with my first love, still with me after almost 25 years, and remember to thank God for this life, as bumpy and crushing as it gets.
Here we are at a happier moment, the Green Room at the Today Show

Ned believes that most people are like one animal or another. This is kind of a game we play, where we meet someone and I say, “So, what’s his animal?” And Ned will think about it, and tell me, and why, and it is always right. He thinks of himself as like a lion, because he’s tawny, he has a large head with a mane (golden beard), he loves meat, he loves to sleep in the sun, he is extremely self-confident (and right to be so) and has an incredibly powerful temper when angered. We don’t often tell other people what their animal is, because it often disappoints them. Many people think they are cats, but they are not. I had a friend who was flighty, skinny, beak-nosed, and timid, and she insisted she was a big fluffy cat. She might feel like a big fluffy cat, or want to be one, but she was definitely a bird. Some people we know are dogs, big and friendly, eager to please. Some are raccoons, pointy-nosed and overly concerned about washing. Some (my sister, for example) are monkeys, chattering a lot and jumping around, making mischief. Some are braying donkeys, long-jawed and given to making long, boring speeches. Nat is a wild pony (dances away from people, comes close every now and then for a sugar cube, has a long face), Max is a big, lumbering mostly gentle bear (can be frightening when mad, mostly cuddly, very strong), and Benj is a goat (Aries, used to eat anything that wasn’t food, is stubborn, little, and can fight you). You can see why it is often difficult to tell people what their animal is.

He thinks of me as a rabbit, because I get afraid of things, I retreat into my warren, particularly when the world gets to me, I am soft-hearted and fluffy, (and, he tells me, soft to the touch), and I am very attuned to changes in people’s moods (sniff the air for the changes) and changes in the environment. I am really plugged into the natural world. At this time of year, I stare out of different windows and study the ground and the trees daily for new signs of spring, and tell him about them (he, of course, has never noticed them, because he’s busy prowling the veldt). He calls this, “the report from the fields.”

Today’s report from the fields: I’m a little shaky from too much caffeine and not enough sleep (and my rabbit’s tender equilibrium), but happy. I noticed bright green buds on my apple tree. The neighbors’ white magnolia is about to bloom. A trilling bird call woke me up at 5 (must be someone I know!)

Joy of Autism has posted a particularly beautiful passage, about her understanding of autism as another way of being, rather than something to be cured.

When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.

I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself…

This resonated with me and made me remember how I felt when I read Sean and Judy Barron’s There’s A Boy in Here. I am not referring to the alleged “recovery” of Sean Barron. Be that as it may, what moved me is the part where Judy, a mother in the ’60’s with a young autistic child, rejects the current thinking of her day, that said that the mother caused the autism, this was a magical moment for me. Such liberation, such bravery! To be able to say to an entire establishment, “You are all wrong.” It is a lonely, but completely empowering, path to take.

And it is a scary path to take. To go against the system in one way or another is very frightening.

Last night I attended a meeting of a group of young parents whose children are very young and have ASD. These parents are now trying to organize and get our town to provide better supports to include their children in typical classrooms, much as I tried to do with the parents of Nat’s peers eight years ago, which led to my running for School Committee.

All of these parents were very knowledgeable about autism approaches, about the various components of education that their children require to learn best. They all had the common trait of being certain that, given this powerful combination of services, their children would continue to thrive in public school settings. I still believe that. Our town has never put together the right combination for Nat to thrive here, so he has always been in private, mostly autistic-oriented placements. I am a believer in public school, so I have had mixed feelings about this. On one hand, Nat has had a lot of the attention he requires to learn. On the other hand, he is lost to our community.

Nat did not have effective intervention until he was five. And then, after years of an inconsistent, spotty record of school placements (we were continually dissatisfied with his education), he wound up where he is now, a private, prevocational school for autistic people. I will always wonder if he would be higher functioning if I had followed my instincts and gotten him evaluated and helped much earlier, like so many of these new parents I know. If the schools had done right by him, if I had found his medication earlier, if I had kept up the pressure and made sure he had adequate speech/language therapy all the way through, if, if, if…

Would he be higher functioning, (I hate that term, but I can’t help but feel that I wish he could talk more, so that he could learn more about the world, and we could learn more about him, and he could be independent) if I had known what to push for sooner? Even though I have the courage to think differently, I don’t always hold onto it. Even though Judy Barron’s attitude empowered me so many years ago, I did not understand fully what Nat needed until years later. I did not even really understand how to connect with him until later. How do all these younger parents know so much, earlier? Why couldn’t I have had as much clarity sooner? Would it have made the difference in Nat’s life?

I was both moved and lonely at last night’s meeting. I was cheering them on, helping in any way I could, but on the other hand, the following question kept swimming around in my head:

By no longer being this angry, have I given up on Nat?

Is there more I should be doing? Is my “peace” with autism just another form of healthy letting go and coming to terms, or is it giving up?

A picture may be worth a thousand words, but that won’t stop me. I am so intrigued by Benji’s mind. He invented a world, a planet called “Stickfus,” which is inhabited by stick figures (Gufligees, Eywetie, Max the Mad Scientist, Pinya, to name a few), and the people on the planet speak two languages: English and Sticktopian. Benj has created this (latter language) and has remained remarkably consistent when he refers to it. His name in Sticktopian is “Bejoq,” (sometimes he signs his schoolwork that way), and so we decided to make him a Planet Stickfus cake with his Sticktopian name on it. You can see for yourself just how happy this made him; the camera caught him in a rare, soft moment. Sigh

The other night, when I read at the Barnes and Noble in New York City, the young events manager was explaining to me about the noise generated by the air conditioning; he said it was, “retarded.” As always, when someone otherwise kind uses this term in this manner, I winced (inside) and cast about for an appropriate response. I said, laughing, “You know, to me that is not a bad thing.”

He paused for a moment, looked appropriately embarrassed, and mumbled something sheepishly, maybe, “Oh, right, sorry” I don’t know, and the awkwardness passed. My mission had been accomplished: to point out in a light-handed fashion, the misuse of the word “retarded.”

Being retarded has some really bad PR. It is like one of the worst things you can be, apparently, at least to many in the general public. Kids insult each other with it, second only perhaps to saying “gay” disparagingly.

Having a child who tests in the retarded range, I have been feeling for years that I have to step in and get people to stop misusing the word “retarded.” I have written letters to ignorant, offensive talk show hosts. I have said to store clerks, “You seem like a nice person. Don’t use that word.” I have said to friends, even, “Let’s not use that word when what we mean is, ‘unskilled,’ or ‘socially awkward.’ Not as satisfying, sure, but that’s not my problem.

Then I heard that there were organizations who had for years worked to improve the lives of the “cognitively disabled” and who were changing their names from using the term “retarded,” to something perhaps gentler, nobler, PC-er?

That seems wrong to me. It’s just that “retarded” is so often misused. The burden should be on the abuser, not the victims.

But frankly, there are so many of us who just wish that our children were not “developmentally delayed,” and so that any other name would smell just as sour. I remember going to an event to raise awareness for a certain approach to autism, and one of the speakers talked about how their child was, at first, diagnosed as “mentally retarded!” Gasp. But now, thanks to this approach, he was “high functioning.” (Never mind that, in the video of the child Before, I observed that he actually played quite well, and at the time wished that Nat could even play as well as that!)

So I thought of Natty, with his “undesirable” diagnosis, and for a split second, the Mother Bear in me nearly jumped up and clawed the speaker to death. And then, I swallowed, and calmed down.

When fetal Nat was growing inside me, all I ever asked of God was that he be healthy and not a criminal. Maybe I should have asked for more, but I always like to prioritize and those two things were the bottom line. God is busy and may be a little ADD; you have to pick and choose what you ask of hm.

The problem is not with the term or diagnosis of “retardation.” The problem is that some people are viewed as less-than by others. I think it is up to me as Nat’s advocate to set them straight. You misuse the term “retarded,” treat it like it is a bad thing, and you will hear from me. Growl.

It is the shopping cliché of all time. The annual bathing-suit try-on. I do not know of a single woman out there for whom this is an easy task. I lost twenty pounds about 3 1/2 years ago, got down to maybe a 6 or a 4, and yet it is still the biggest drag in the world to buy a bathing suit. When you go to buy a dress, you know where to go; you go to several stores where you will eventually find just the thing. When you go for shoes — and this is not that easy a task — you still know that you are basically a size “8” or whatever, and you get an idea of what looks good and what does not fairly quickly. There is not tons of self-esteem at risk here. The dress, yes, perhaps, but it is easy enough to find one that covers you in just the right way.

So what is it with bathing suits? Why is it so excruciating? Why does it take twenty different ones to maybe get one?

It is the designers. They don’t know sh** about women. And this is not about “everyone hates their body.” This is about designers who cannot measure, who don’t understand the first thing about the female form and can’t be creative if their lives depended on it. Therefore I am making a list to “out” the worst features and see if they can do better from now on.

First of all, the Miraclesuit: there is no miracle here. It does not work. Nobody is fooled. Any suit that is two sizes two small will reduce ones waistline by an inch or two, but what do you do about the way the excess — usually your thighs — bulge over the leg elastic? And why do they always come in hideous, mournful color combos, namely black or black with something? Do the designers thing that because a woman feels she needs a bit of squeezing that she is also in mourning?

Second: the tankini: Why is it that these all look the same and fit completely different? Why do most of them have the high bottom if there’s also a long top to pull down, creating layers of excess stetchy fabric around the middle (Nautica)? Why do many of their bottoms have a seam down the ass crack (Ann Cole, Calvin Klein, Anne Klein, and Ralph Lauren)? Do the designers think that just because it’s mostly soccer moms wearing the things that they don’t care if it looks like they have an ass crack on the outside of their bottoms? And finally, what about the tankinis that come down to just below the bust, leaving a huge gap of stomach showing? If we wanted our stomachs to show, we would wear bikinis!

Which brings me to my third gripe: the bikini: What is the point of labelling these things small, medium, and large, when they are really small, smaller, smallest? I looked at a top marked “large” today (Calvin again) and I held the triangle “cup” in the palm of my hand and it fit right there! Then I tried on one marked “DDD” thinking, “wow! All the power to you, Shoshanna (the designer) for thinking in terms of large-busted women’s sizes, only to find that the front was cut so low and so wide that half my breast was still showing! Shoshanna must be designing for porn stars.

Fourth: Why don’t manufacturers get it together and do all mix and match? Why not decide that stores can mix and match brands, not just tops and bottoms? What woman is always an “8” in bathing suits, top and bottom? Most people who are small on top are larger on bottom, and those who are heftier around the top and middle tend to be a little lighter in the ass. That’s the way God planned it: almost nobody gets both ways. That’s why the women you see with the perfectly skinny bodies and the floaty round breasts are usually implant victims. Anyway, that way if the Nautica bottom fits you, but the Ralph Lauren top is better, you can put them together.

Fifth: What is with the colors and patterns this year? Is it 1978? If I see one more flower-power suit I think I’ll scream! Ann Cole used to be the best for color; this year, it’s all that retro garbage! The rule is, that if you wore the pattern or style when you were a kid, you probably don’t feel like wearing it now!

Sixth: If there is a tummy tightener, a waist lengthener, and a high-cut thigh for fat thighs, why is there no bust minimizer bathing suit that is not a grandmother one-piece? Why can’t they make tankinis and bikinis for people with big busts? Or an ass-shaping kind for the babies who got back? Use some of that great underwear technology harvested by Victoria’s Secret or Minimizer Bras to do some good! You’d think Victoria’s would have a clue but forget it! Their bathing suits fall prey to the same problems as everyone else’s. Believe me, we don’t want strangers knowing this much about us that only our husbands, boyfriends, or doctors should know!

We women want colors, patterns, cuts, shaping for real women: not funeral guests, not Skipper, not Barbie! Get a $#% clue, designers or we’ll all start going in the water in our shorts and tee shirts! Hey, that’s not a bad idea!

My Brookline Tab column this week was about my town’s inadequate school budget. This would have been my fifth budget cycle, had I not stepped down from School Committee this past January. I could not do it any longer. I have the book tour and other distractions these days and it was too difficult to give it my full attention. In my town, School Committee is supposed to be part-time volunteer work but it ends up being nearly full-time, and with no pay. It’s not about the money, really, but the job is tremendously thankless, and it was very hard for me to advocate for change while being in that position. And I feel there is a great need for change in my town, as progressive and forward-thinking as it is.

We should not be making cuts to the schools, not if we are as proud of the schools as we profess to be. We should be increasing the budget, and raising taxes to do so. Why are taxes a dirty word? Taxes are how we get our roads, our schools, our national parks, our programs like Head Start and Title I. Taxes are how we pay for special education. Private money is just too unpredictable, too prone to narrow ideology.

This year, the proposed budget includes two boneheaded items: reductions in our Performing Arts program and the hiring of a half-time Board Certified Behavioral Analyst (BCBA) for the kids on the autism spectrum who are not in the substantially separate programs. This is a 20-hour staffer for up to 60 kids! At 7 schools! I was appalled, so I spoke at School Committee last night, as a parent. Very weird to be on the other side of the table.

I talked about how, to paraphrase Shakespeare (I think): For want of a behaviorist, a public school placement was lost. I talked about how Nat has almost never been included in the public schools, even though I am a strong believer in public school, because there has never been adequate behavioral support for his needs. There is no mystery to educating kids with autism and behavioral issues: BCBA’s are a great help, they are the autistic kid’s wheelchair.

I am sick to death of hearing about the Mystery of Autism. And the high cost of special education. It is only a mystery if you don’t learn the approaches. SPED is costly but no SPED is even costlier. Think about it. Where do those people end up?

Poor planning is the culprit. My town did not provide for Nat other than to place him in an expensive out-of-district private school, and I’m grateful for that, of course, but there is a rub: Nat is practically lost to his community because of the much-vaunted Mystery of Autism.

The only mystery here is how to get my elected officials and school administrators to start planning and stop being pennywise and pound foolish.

This means, literally, “One beautiful chicken.” It is something my grandfather used to say whenever something broke. It is a Yiddish expression that is loosely translated, “Better that it happened to the chicken [the thing that broke] than to us.” “Us,” meaning, the family, or the Jews. Better to lose the chicken, slaughter it, whatever, than … The attitude comes from centuries of oppression, Gentlemen’s Agreements, pogroms, Inquisitions, Expulsions, Kristallnachts, Massadas, etc. As a people, the Jews have certainly endured more than their share of abuse, and it is in our DNA to remember that, no matter how much therapy one might undergo.

Anyway, I love “eine shayna capura,” because it is a great way to shrug off one’s feelings about loss. It reminds me that these things are only things, whether it is a plate that broke (a wedding dish broke this morning, prompting these thoughts) or something else not turning out the way you expected it to. Even autism. Even a flaky friend. Even nasty blog comments. Even having a mid-life crisis. It’s not the end of the world. It is just the chicken, not us.

Every so often, I let a new person into my life. I don’t do this easily, because I don’t trust easily. I know the reasons for this, and I’ll sum them up by saying that certain inconsistencies in my childhood left their mark, and so trust comes hard.

But I have had this same experience more than once by now, where I am pursued by someone interested in being my friend, and I am not sure of them for some reason. Maybe I’m wrapped up in a project, or simply content with the friends I already have. But these pursuers persist, and I slowly give myself over to their friendship. And then something shifts, and I realize that this new friendship is important to me. I realize that I liked being pursued. As soon as I have this realization, I begin to get anxious about holding onto the relationship. I start noticing it. I start noticing the dynamic of who-is-calling-whom; who-initiates-what. I think this is known as an “anxious attachment,” and it is a very tough dysfunctional behavior to break. I remember way back when I was 10, and I had my first intense friendship, with someone named Cynthia. I remember when she told me I was her “best friend.” This thrilled me so much that I felt almost addicted to it. I asked her frequently if I were still her best friend. This was my first conscious anxious attachment. Eventually (eight years later) she dumped me.

I feel it happening now sometimes with someone who pursued me and made me feel like I was the finest person on earth. I was uncertain about it. At last I opened my heart, and shortly after, the anxious attachment began sinking its black teeth into the friendship. This person often withdraws. My evil insecurity poisons it. So that’s what I’m dealing with now. A feeling of wondering if I’m a chump for trusting, and the burning shame of feeling not appreciated for being who I am. I probably see these things coming and so I resist these intense new friends, but they get under my skin, especially if they are Tauruses.

I sometimes wonder if my anxious wiring is related to Nat’s being autistic. I feel that they are related; we are both on SSRIs, and we both obsess about things. I wonder if he is free from this sort of pain, because his relationships with people are so much more basic. Although maybe they feel very, very complicated to him.

I guess we all have our own private hells to navigate.