For Gus, it was the first time that someplace other than home truly was the Happiest Place on Earth. Maybe we’d never visit Normal Land, but we could still have fluffy bathrobes and 3,000-thread-count sheets.
Eight
Doc
The endocrinologist shows me the chart. At first she says nothing. I hope she uses her words, I think. I can’t really read charts, but I don’t want to admit this. I got a 490 on my math SATs, not that that number is seared into my brain or anything. Anyway, all I see are some lines going up and a dot way below those lines, and that dot is fourteen-year-old Gus.
“Gus was in the bottom 5 percent for height for his age throughout most of his life,” Dr. Gabrielle Grinstein begins, “and now he’s at the bottom 3 percent. That’s not a huge drop-off, but a blood test might tell us a little more . . .”
Gus had quietly been playing Disney Villains on my phone, but now he is paying attention. “I have to have a blood shot?” he asks nervously. I don’t mention that if things are the way I expect they are, that one shot is the least of it. But one thing at a time, right?
Gus is short. Not Lollipop Guild short, but close. His weight is in the twenty-fifth percentile, while his height now is in the third percentile. At fourteen, he is not yet five feet tall.
I try my best to avoid doctors. I mean, not entirely. Do you have a spear sticking out of your head? OK, fine, let’s go. Otherwise, no. The best advice my mother, a doctor, gave me was: Don’t go to doctors. They will find a problem, whether or not you have one. Or, failing that, they will judge you. Particularly for fretting about something as seemingly inconsequential as height. A few years back these concerns sent worried friends with a mini son to the endocrinologist for testing. The doctor stared them up and down. The husband is five foot four and the wife, four foot ten. Finally he said, “So, what were you thinking here? That he’d be playing for the NBA?”
But this was different. John and I are not giants, but we’re not wee, either. I’m five foot eight, and John, height reduced from age and now about five foot seven, swears his draft card had him at five foot ten. “Men all lie,” says Dr. Grinstein cheerfully when I give her his stats. “Let’s go with five feet, nine inches.”
There is no surefire formula for predicting a child’s height, but the estimate goes like this: add the mother’s height and the father’s height, add five inches for boys or subtract five inches for girls, and divide by two. That’s five foot ten, in our case. A child generally falls within four inches of this height estimate, which would mean Gus should be anywhere between five foot six and six foot two. Should, but will not. Even making five foot six, which would be great, is extremely unlikely at this point.
Dr. Grinstein explained to me that the blood test she was taking may not even show a growth-hormone deficiency. To really know if he had one, Gus needed to have his blood levels checked in a hospital setting over a period of several hours. But there was another reason he might be so small. Gus was identified as “small for gestational age.” He was three pounds, eleven ounces, born at thirty-three weeks. That is considered unusually small even for a twin, given the number of weeks he was cooking inside me. About 20 percent of kids who are small for their gestational age have a lifelong problem with growth hormone. It’s not that they don’t have it; it’s that the hormone fluctuates in such a way that they never catch up. Henry was born at three pounds, one ounce, even smaller for gestational age, though now he is taller than me.
Getting Gus to give up his blood was easier than I thought; it only required three grown women shimmying and shouting “YAY” and “LOOK OVER HERE” while Gus stared at the blood coming out of his arms. He had his eye on the real prize, though, a Starbucks vanilla bean Frappuccino. It’s a drink for which I give thanks daily, as it’s the only bribe that works. Even that didn’t work for peeing into a cup, though. We had to give up, but not before we had dropped five cups in the toilet. We went home a little exhausted, with Gus mumbling under his breath every few minutes, “I’m a brave boy.” Now we wait.
“Why can’t I get growth hormone?” Henry asks when I told him Gus might get it.
“Because you’re not short?” I replied.
“Maybe I’ve stopped growing already,” Henry continued. One of Henry’s greatest talents is making himself anxious. “Maybe I’m as tall as I’ll ever be, right this second. And you know as well as I do that extra inches of height are correlated with more success. Would you stop me from being as successful as I possibly could be?”
“It requires a shot every day for the next few years,” I say.
There was a pause.
“Who wants to loom over other people?” Henry says. “Girls like guys who are midsize.”
* * *
There are several factors militating against any sort of intervention. For one thing, I am one of the taller people in my family, with many on the Italian side resembling fireplugs. So maybe Gus just got some throwback genes. And since Gus had always been short, I had my list of extremely hot, compact men ready to hand him at the first available opportunity. Mark Wahlberg, Kevin Hart, Humphrey Bogart. Prince was five foot two. You get the idea. One of my most cherished relationships had been with a man several inches shorter and considerably scrawnier than I was; once I got over the Chihuahua–Great Dane visuals playing in my head, it was fine. It ended terribly, but every relationship ends terribly if you don’t end up together, so I counted it as a great success. My takeaway from that, which I hoped to impart to my son in some maternally appropriate fashion, was this: short guys aim to please. One of the prejudices against short men is that women want to feel feminine, and culture has told them that a big guy will make her feel adorable and protected. But things are changing. Make a woman feel feminine, sure, but also powerful, and all will go well. Have you ever seen Mick Jagger with a woman who wasn’t a head taller than he was? Shut up then.
And then, there was this: Gus had not spent one second of his life worried about his height. The parents I knew with extremely short children were generally driven by their children’s fretting, not their own. So why was I dragging my perfectly content kid off to the endocrinologist to see if he was a candidate for growth hormone? A daily injection that in reality might give him two to four extra inches, probably no more? If I was willing to do this, what else about cosmetically improving my child seemed reasonable? My officemate, Spencer, not a big fan of my plan, kept throwing out suggestions for a rebooted version of Gus. “I know! He’s got your nose—well, your old nose. Why don’t you get him your new nose? Is your plastic surgeon still in business?”
* * *
“Did you hear, there’s a new breed of superlice,” John said with satisfaction as I prepared to discuss Gus’s height issue. “They’re mutants. No over-the-counter product can—”
“Speaking of tiny mutants . . . our son . . . ,” I began.
For once I had John’s full attention. A man who never wants any medical intervention at all wanted this one. “Since he’s starting out with handicaps, we have to do everything we can to level the playing field,” he said. I’d forgotten; John always felt his career would have been better if he were taller, though arguably in opera, if you’re five foot eight and 350 pounds and have a glorious voice—you know, like Pavarotti—you’re still hired. Brushing aside the exceptions, John insisted that in most of life Gus’s height would matter. “If you have a man who’s five foot five and another who’s six feet and they’re equally qualified, it’s the six-foot man who gets the job.”
But Gus’s gaining a height advantage for some corporate job he would never have or to be a nightclub bouncer was not a factor. For me, it was much simpler.
Adults should be able to do exactly what they want with their own bodies. No exceptions. But in the matter of height, there is only a small window of opportunity in adolescence when growth hormone might give him these extra inches. That window would be closing soon. He doesn’t care now because he still thinks like a little kid. What about when
he is twenty-five? Let’s imagine. Twenty-five years old, finally with the feelings of a sixteen-year-old; now he is five foot two, not happy about it, and he can’t do a damn thing. If only his mother had been able to make up her mind. For some things, inaction is a form of action, putting off the decision until the decision is made.
* * *
Most of us try desperately to do right by our children. But for many parents with the “average” kid on the spectrum, the struggle is more complicated. It’s one thing to make medical decisions for someone who will never be able to make these decisions for himself or make decisions that are easily reversible with no enduring consequences; it’s quite another to make them when you still don’t know whether or not your kid will have the understanding and will to make them himself.
This is why contemplating Gus’s medical future crushes me with the weight of the responsibility. Deciding to increase someone’s height is one thing: basically it’s cosmetic, and even though I’m fretting, little hinges on it. No, the medical issue that really makes me hyperventilate is fertility. It’s a question all parents of special needs kids wrestle with, whether they speak of it or not. What happens when you discover a lack of social skills isn’t a surefire method of birth control? That the kid you think would be entirely unable to find a partner does just that, though his or her ability to understand what it takes to raise another human being is limited?
It is very hard to say this out loud. Let me try. I do not want Gus to have children.
At least I’m pretty sure that’s what I want. Don’t I?
If I had to decide based on the clueless boy I know today, it would be easy: Gus should not be a parent. Not just because he’s still shaky on the whole concept of where babies come from, but because the solipsism that is so much at the heart of autism makes him unable to understand that someone’s needs and desires could ever be separate from his own, let alone more important. He can’t even quite fathom that the people he loves existed before he did. For a long time he thought I was born in 2001—his birthday. In a sense I was born then—born a mother—but I’m pretty sure that’s not what he meant.
Nobody wants to visualize their child that intimately, but when I think of Gus in a sexual situation, it generally has a Benny Hill soundtrack. And anything with that music does not end well.
A vasectomy is so easy. A couple of snips, a couple of days of ice in your pants, and voilà. A life free of worry. Or one less worry. For me.
How do you say “I’m sterilizing my son” without sounding like a eugenicist? I start thinking about all the people, outliers in some way, who had this fundamental choice in life stolen from them—sometimes cruelly, sometimes by well-meaning people like me. The eugenics movement can be traced back to psychiatrist Alfred Hoche and penal law expert Karl Binding, who in 1920 published a book called The Liberation and Destruction of Life Unworthy of Life. Its popularity fostered the first eugenics conference in the United States in 1921. The term “eugenics” means “the good birth.” Sample papers: “Distribution and Increase of Negroes in the United States,” “Racial Differences in Musical Ability,” and “Some Notes on the Jewish Problem.”
“Liberation” is such a wonderful euphemism, and in this context many people like my son—and undoubtedly some even less impaired—were “liberated” from the burden of life by those enthusiastic proponents of culling the herd, the National Socialists. An estimated four hundred thousand “imbeciles” were euthanized during Hitler’s rule, but not before they were the subjects of all sorts of medical experimentation. For a while there, Austria seemed to have cornered the market on brains in jars.
The idea of outright murdering “nature’s mistakes,” as the disabled were called, was softened somewhat in the United States. As the psychiatrist Leo Kanner was observing and defining autism, he was also lobbying for sterilization, but not death, of disabled populations. This was considered a progressive view at the time. (He believed there were all sorts of repetitive tasks autistic people could perform that would be good for society, and he wasn’t wrong here, that’s for sure. But we didn’t have computer programming at the time, so he proposed a population of ditch diggers and oyster shuckers.) Around the same time Hans Asperger, the Austrian pediatrician who was the first to identify autism as a unique mental condition, was concluding that “not everything that steps out of the line, and is thus ‘abnormal,’ must necessarily be ‘inferior.’”
That was an even more radical line of thought, and one society struggles with to this day. But wherever you stand on this question, when you start considering how the history of disability is inextricably intertwined with the history of euthanizing and enforced sterilization, you come away unsettled. I began to question my certainty that Gus should never have kids. There is a good success rate in vasectomy reversals, and surely there will be even easier, more reversible methods for men soon. And when there are, I’m going to be the first in line to sign him up. Kids at twenty or twenty-five? No. Thirty-five? I can hope.
“I’m never going to have kids, but if something happens by mistake, he can borrow mine,” Henry says when he overhears me discussing with John whether or not Gus should ever have children. “He might make a good uncle. He can show them how to play piano and get around the subway systems by themselves.”
Gus wanders into the room. “I like babies,” he says. “They have the best feeties.”
“Go ahead,” said Henry, smirking. “Ask him where babies come from.”
Gus changes the subject.
* * *
Dr. Grinstein, the endocrinologist, calls. “Everything is normal,” she says. Gus doesn’t have a quantifiable growth hormone deficiency, but the diagnosis of “low birth weight for gestational age” still stands. “The good news is that his bone age is younger than his actual age. So you have a little more time to figure out what you want to do. Come back in November and we’ll check again. Let’s see if he has a growth spurt on his own.”
I am nothing if not a procrastinator, so the ability to kick the can down the road, even for a few months, is a relief. It seems he may grow a bit on his own. It also seems he will not be in danger of dating anyone anytime soon. That decision, too, can wait.
I don’t mean to visit my own worries on Gus. Yet sometimes, in moments of weakness, I do.
“Honey, do you care that the kids in your class are a lot taller than you, even the girls?”
“Nah,” he says, wrapping his arms around me. “They think I’m cute. Aren’t I cute, Mommy?”
You’re cute.
Nine
Snore
Henry and I are staring down at Gus, who is forming a Keith Haring silhouette on my bed, lightly snoring. “Face it, Mom,” Henry says. “This is creepy.”
It is not creepy. It is sweet. Or maybe it’s creepy and sweet. I don’t know. I just know that this has been going on for years, and I can’t make it stop.
Let’s recap: Only child here, no idea how babies operate. Until forty I did everything in my power to avoid being around children. Husband last spent time around children when he had one at nineteen, and now is a new father again at seventy. So our knowledge of what’s normal and what’s not normal is a little shaky.
When your children are born, one of them is crying, demanding, in-your-face. Gimme gimme gimme. Food now. Change now. Pick me up. Lock eyes with me so I know I exist. You know: a baby. The other one is sweet, undemanding, and limp. He never looks at you and seems perfectly content being left alone. An angel. Maybe he has other concerns. Maybe he’s a deep thinker.
I never nursed Henry and Gus. Instead, when I fed them, I’d prop them up on my knees, stick bottles in their mouths, and yak or sing show tunes to them. Henry would gulp milk voraciously and look vaguely irritated that he couldn’t tell me, as he did in later years, how much he hated musicals. Gus would stare off into some distant point past my shoulder, like someone at a party looking for a better person to talk to. Perhaps he was listening to some music playing in his head.
But I don’t know, he seemed to enjoy himself. Well, except for the part where he projectile-vomited a lot because it turned out he was lactose-intolerant. But other than that endearing little quirk—happy.
The only thing about him that bothered me was that he really didn’t like to be touched. He would cry, tense up, turn his head away. But I don’t particularly like to be touched, either; when I think about my Circle of Hell, it would involve eternal massage. Is it so terrible that he wasn’t tactile?
Apparently it is. Apparently doctors don’t like to hear, “Oh, he’s just fine on his own.” In The Siege, the classic 1967 memoir that was the first to describe raising an autistic child, the author, Clara Claiborne Park, who had three children previously, knew something was wrong because her daughter asked for nothing: “If it’s all one to you whether mama comes or not, you aren’t likely to call her. If you don’t want teddy enough to reach for him with your own hand, you will hardly ask for him with a word.” I used to be pleased with what an easy baby Gus was. He didn’t ask, he didn’t reach, he didn’t demand. There was that touch thing, though.
When a couple of friends suggested I take him into bed with me and snuggle, I scoffed. First, snuggling wasn’t in his bodily vocabulary. And second, I wasn’t one of those hippie mothers. Gross. Attachment parenting, a phrase coined by the pediatrician William Sears, is based on a theory of developmental psychology that suggests a child’s emotional makeup is largely determined in the first few years of life. Being constantly available and sensitive to the child’s needs not only helps the child form a strong bond with the parent, but also imparts a sense that the world is a safe place. The family bed—co-sleeping with your children—is an important tenet of attachment parenting.
To Siri with Love Page 10