What I learned from Melanie and Tommy

By Sarah Weinstock

I was really looking forward to seeing the BLOOM talk called Let's talk brothers and sisters that happened back in November. I knew that the family giving the talk had a daughter with special needs and a younger, typically developing son. Since I have the same dynamics in my family (two daughters, the older one with a genetic condition causing global developmental delay), I knew I wanted to hear their story.

The parents, Nathalie and John, helped their kids give a short presentation that explained their close relationship as siblings, their beloved pet rats, and how their lives are affected by Melanie’s syndrome and other people’s reactions to her. Then, they talked about how they dealt with Melanie’s syndrome as it relates to Tommy. They covered how they helped him to understand her challenges, how they comfort him when he’s upset about people’s reactions to her, and how they have worked to let him express his feelings about her and their sibling relationship (see the book they wrote here and their website here).

I reacted very strongly to this talk and I’ve been thinking about why ever since. I think it was mainly due to how open this family was. Obviously, a certain level of openness is expected if you’re standing in front of a group giving a presentation, but it was more than that. I really felt that this family is comfortable with how they are navigating life with a child with special needs and her younger brother. And they were willing to let all of us see that life with all its bumps and thrills.

When they moved on to answering our questions, they continued to let the audience in. And not just to the happy images of the two kids playing with their rat friends and the media attention that Tommy has received with his desire to tell people about his sister. They were just as comfortable telling us about the difficulties of raising a child with special needs: the heartbreak of hearing another child tease yours because she’s still in diapers and doesn’t know her ABCs or the attempts to comfort her brother who doesn’t understand the taunts he hears at school.

Nathalie made one particular comment that gave me such a clear view into the way this family has chosen to open up to those around them. She said that if Tommy ever came home upset that a child had made fun of Melanie, her first reaction is to tell him to invite the child over. That blew my mind! I think it’s so generous to understand that kids (and adults) often react negatively to a new and different situation out of fear or uncertainty rather than out of malice or cruelty.

Instead of retreating from the negative feelings of others, Nathalie’s instinct is to lean in, and believe that being open and welcoming will help her own children as well as those who might not know how to behave around those who are different. And that approach has succeeded, as kids have reacted positively to Melanie when they see her at home with her family and get to spend some time with her and Tommy together.

To see their mother respond that way is so rewarding for Melanie and Tommy. They’re learning to let people in, to teach and offer people new experiences rather than resent those who don’t understand a different kind of family.

It's tempting to look at what this family has done as a blueprint. I thought to myself, “If I write a book with my younger daughter about her older sister, then we can tell other people about it and help them learn that children with special needs are such special siblings, etc.” But, in fact, what Nathalie and John did was listen to what Tommy wanted and help him express his feelings about Melanie in a way that made him feel comfortable and powerful. I look at my younger daughter, who's only just three and doesn't even know that anything is different about her older sister, and I wonder how she'll react when she hears others comment on her big sister's difference. She'll have her own way of expressing how she feels about living her reality and, whatever it is, we'll be there to help.

I hope to be as open as Nathalie and John have been with their kids and those around them. I think about it almost daily, how I'd like to model that kind of generosity and belief that people tend to surprise you when you give them the chance.

We face an uncertain future – about my older daughter’s life, how she’ll exist in the world, how others will react to her, and how all of it will impact her sister. But I can always choose to focus on some certainties: the love and support we’ll give our daughters no matter what, and our option to remain open and trusting. I’m grateful to Melanie, Tommy, Nathalie and John for reminding me of that.

Sarah Weinstock (above with Rae, left, and Willa, right) is a family leader at Holland Bloorview.

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In Mary-Ann's 'ark,' diversity is welcome

By Megan Jones

Mary-Ann Nova (front right) steps into her miniature jungle cat’s cage the same way as always: holding a dog dish filled with a fat-laced slab of chicken. Her 40-pound caracal Sassi—a lynx-like cat that fells small prey with a swift five-metre leap and a bite to the neck—is perched, hissing, on a platform above.

Pressed against the cage, about 25 children stare, their fingers intertwined with the structure’s chain-link fence, trying to get as close as possible. To one side, miniature pigs squeal and crash into their pen’s walls. To the other, a young woman clutches a three-foot bearded dragon to her chest like an over-sized, amphibious infant. Still, all eyes remain fastened to Mary-Ann and Sassi.

Mary-Ann ignores the hissing. She lays the dish down, steps back and absentmindedly twists her tangerine-orange hair into a bun. Sassi descends and circles the food before eating. After she tears the last piece of meat, Mary-Ann makes contact and Sassi melts into a seated position while her owner strokes her back.

“Some people are just like Sassi,” the 57-year-old explains to her audience. “They’re very anxious at first, so you need to learn how to approach them carefully, at their own pace.”

Not one word is ignored. Mary-Ann’s voice doesn’t just calm, it mesmerizes. Some children in her audience have disabilities and are accompanied by volunteer mentors. Others are typically developing. But they’re all absorbing the same inclusionary lesson in Mary-Ann’s backyard through a program called Nova’s Ark. Mary-Ann’s been a bit of a misfit her whole life, but here, she’s found her calling.

Nova’s Ark is a day camp designed for children and adults with special needs. On any given day in the summer, there are about 15 to 20 children and young adults visiting Mary-Ann’s property.

The camp caters to children with a range of disabilities. Over the past 10 years, Mary-Ann has collected more than 60 different animals from rabbits and turtles to hawks and kangaroos. She builds her programming around the animals, using the critters to bring campers together. “Some children may have trouble socializing or relating, but when they see these animals, it starts a conversation,” she explains. "The animals are something everyone can relate to.”

It isn’t what Mary-Ann intended to create. In 1998, she left her Whitby, Ont. subdivision and moved about 10 km north with her husband, Geoff, and son, Kyle. They settled on a 10-acre property in Brooklin, Ont.

Mary-Ann, then principal at Sir Samuel Steele Public School and former special-needs consultant for the Durham District School Board, bought two horses and some house pets. She wanted to use them to provide alternative summer programs for a few children with severe developmental and physical disabilities who were friends of the family.

Mary-Ann was discouraged by the existing school education available to kids with special needs. She felt students were unfairly subjected to one-size-fits-all standards of success. If kids didn’t fit the model, Mary-Ann says, they were given up on.

She was familiar with the feeling: Mary-Ann has a learning disability that makes it difficult for her to understand written information. Growing up in Selkirk, Manitoba—about 20 km north-east of Winnipeg—she struggled academically. In elementary school she was called unintelligent by teachers. As a teenager, Mary-Ann says she was told she’d amount to nothing “except maybe get married and have some kids.”

Mary-Ann was a farm girl, and found barnyard animals like pigs and horses comforting. As an adult, she started believing they could be used to teach empathy. She saw animals as catalysts for bonding between humans.

Mary-Ann started small: about five kids each summer and on weekends. She gathered volunteers—mostly teenagers from unstable family backgrounds or those who were struggling academically. She wanted to give them chances to thrive. At the same time, she collected increasingly exotic animals, working up from guinea pigs and goats to a python and zebras. Many came cheap: they’d been abandoned at birth or abused by breeders.

In 2004, Nova’s Ark became a registered charity. Soon, Mary-Ann had amassed an army of over 60 part-time volunteers. In 2011, she left the school board—abandoning a six-figure salary and nearly her full pension—to build Nova’s Ark full-time.

Mary-Ann admits that growing the program was challenging. She and her family share everything with Nova’s Ark—their time, labour, even their living space. “There’s always something in the house,” she says. “We’ve had a play pen in our bedroom with a baby wallaby. We’ve had a capybara that spent evenings on the couch watching television with us. In the winter we open up the deck-room door and the lemurs come in and sit in front of the fireplace or on our shoulders.”

Geoff, who’s “not an animal guy,” sometimes gets frustrated, particularly when she makes decisions without consulting him. Once, the former General Motors executive went away on business and returned to a five-foot tall baby camel on his couch. Another time, Mary-Ann sold the dining-room set while he was gone, and began converting the space into a parrot room. Still, she says, “When he sees our children with special needs or hears from the parents and sees how happy they are, he understands.” They have been married 35 years.

The Novas also faced financial stress. In the three years before Mary-Ann quit her job as school principal, they contributed about $100,000 of their own funds annually to the program. When Mary-Ann no longer collected a salary, they used their savings. Nova’s Ark can’t secure government funding because the program doesn’t fit squarely into existing application categories. But corporate and private sponsors—like Home Depot, FreshCo and Autism Ontario—have come through. This April, after 15 years, the Nova family was able to stop contributing, relying solely on sponsors for funding.

Mary-Ann only accepts campers with disabilities into the program, a choice she plans to stick to.“The campers who come to see me are always being told to wait, always being pushed to the back of the line,” she explains. “There are lots of opportunities for [other] children. I wanted to create a space for children who need this most.”

Sometimes Mary-Ann lets other day camps—mostly made up of typically developing kids—visit her property for the day (for example, aToronto day camp is in attendance during Mary-Ann’s lesson about Sassi). When other camps come, the visiting children are encouraged to interact with Mary-Ann’s campers. This way, she says, both groups learn from each other.

Once Mary-Ann finishes feeding Sassi, her audience disperses. She moves to her porch and watches children choose their activities. This part of the day is deliberately unstructured: Mary-Ann believes that kids with disabilities shouldn’t be bound to rigid learning schedules. Instead, she gives campers charts with activity options—trampoline time, spa activities, crafts, discovering animals—and allows them to decide their own schedules at their own pace with the help of volunteer mentors.

It could be chaotic, but under Mary-Ann’s ringmaster-like watch, it’s calm. “Over there are Connor and Sierra,” she says, pointing to a boy with autism and a girl with cerebral palsy. “Some people may say that I’m very crazy and that I’m very eccentric, and they can say that, but just look at this.” Connor and Sierra, along with their mentors, lead two donkeys across the lawn. “And look,” she says, “here comes our bearded dragon.” This time it’s led on a leash. Close by, some children swing from a tire attached to a tree. Others use oversized wands to make large, clumsy bubbles.

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Take a look at yourself, and then make the change

A commenter on Paul Austin's response yesterday said that it was clear I had misinterpreted the frustration expressed by some parents.

I don't believe I did.

I did feel the same discomfort when I first read Paul's piece. As the parent of a child with intellectual disabillity, I have a strong radar for depictions that suggest a person like my son is less than human. When I felt those pangs of discomfort –  the first being where Paul pinches Madison to try to get her attention and likens her eyes to those of an animal caught in a trap –  I wanted this story to be tied up neatly at the end with an epiphany. I wanted this doctor to come to a place where he clearly sees that as humans we are all fragile, and we are equal in our fragility. I wanted him to understand that expressing pain isn't an indicator of being less than human. If anything, it is what makes us human. It is what makes us capable of empathy.

However, the more I read the piece, the more I read irony and bravado into Paul's thoughts. He's trying desperately hard to build a case for why his daughter is better off than Madison, mentally cataloguing each comparison. Yet the more he insists his daughter is both different from Madison and invulnerable, the less convinced he seems. That line from Shakespeare's Hamlet came to mind: "The lady doth protest too much, methinks."

And then I thought about how stereotypes are transmitted through a culture, so that no person (except perhaps a baby or young child) is immune.

I thought about how I'm part of a culture where stigma against people with disabilities is deeply rooted – in all adults – not just people outside the disability community.

I thought about the French study last year that showed that stereotypes exist at the unconscious level – so that one can be surprised at thoughts or feelings one has that don’t line up with one's stated views. "Where did that come from?"

In the study linked to above, researchers found positive explicit evaluations of children with Down syndrome can co-exist with negative associations at an unconscious level, revealing hidden stereotypes.

In other words, people who say and believe they are accepting of children with disabilities – even, according to the study, caregivers who work with people with intellectual disabilities – can carry the same dark stereotypes you would expect in the ignorant, but in an automatic way they're not necessarily aware of.

I thought about how these stereotypes are within all of us. It's not a matter of parents who are "enlightened" vs. those who aren't, or parents vs. the outside community. These stereotypes are socialized into our collective consciousness. That's why we can so easily trot out the negative attributes commonly associated with people with intellectual disability. It's no secret because we were raised with these ideas.

What is disturbing is that people who don't acknowledge their own connection to these stereotypes may not even be aware that they operate at an unconscious level. When I asked the lead researcher of the study above if we can be trapped in automatic stereotypes handed down to us by our predecessors, she said: "As long as we don't know about them, yes."

Only, she said,  if we have self-awareness, can we "choose to change stereotypes, to struggle" to free ourselves from them.

I can recall times during my son's life when I've had thoughts that are fed by our culture's discriminatory values against disability, and against particular types of disability.

I remember when my son was diagnosed at three days that I took comfort in the fact that his rare genetic condition wouldn’t immediately mark him with the features associated with Down syndrome.

Before his intellectual disability was diagnosed, I went to great pains to tell people that “mentally he’s fine” – knowing that in our culture, people with limited intellect are not valued as much as those with high IQs.

I feared what life would be like if my son was indeed intellectually disabled. My conception of what that meant – based on my ignorance – didn’t match up with my beloved, charming, curious little boy.

When I received his diagnosis at age 11, I wept inconsolably, knowing the stigma my son would face.

I thought about times in which, like Paul, I've compared my son with other children, with my son coming out on top. But I now see this as a last-ditch coping mechanism and not a position of strength.

It’s similar to when I hear about a horrendous incident on the radio. I might say to myself: "Well, at least I’m not dealing with that." Is that a charitable thought to have? No. But during a stressful period it may give me perspective.

I know that at vulnerable times when I have found myself tied up in mental knots about my son's disabilities – one in which I might fall prey to trying to convince myself that my son is better off than another child – that this does not reflect my sense of superiority but the exact and utter OPPOSITE.

It reflects my deepest insecurity, vulnerability and anguish. I've been reduced to trying to prove to myself that my son is valuable – something that in a saner moment I would know to be immutable.

I know how tempting it can be when writing to censor out thoughts or feelings, to present the "next-generation" Louise –  the one who doesn't carry any of our cultural baggage about disability. Why not just wipe the slate clean?

But when I see the dialogue sparked by Paul's piece and the follow-up posts, I believe it's a good thing. I don't believe we're better off pretending that as parents we've never had stereotypical thoughts flit through our heads, even gain some traction. If anything, I think we need to talk and talk and talk about this. And not just amongst people in the disability community. But broadly. We don't change stereotypes by mandating what people think or feel, and castigating those who don't measure up.

(Of course, we can legislate and enforce how people act!)

It makes me think about how I used to be on the alert to catch anyone not using people-first language – convinced it meant they were demeaning people with disabilities (whether they had even heard of the people-first concept or not).

And then over time I realized that someone could use people-first language and still be incredibly patronizing. On the other hand, someone could "put their foot in it" with language but be genuine.

Recently, adults with disabilities are speaking up to say that they should be able to choose how they'd like to be referred to: "I'm not a person with a disability, I am a disabled person" writes one young woman. And a colleague of mine who has a disability asks: "Why do people without disabilities decide what I'm called?"

Pediatric rehab researchers have begun using the term "disabled children" to refer to children who are disabled by their environment and public attitudes.

But without open discussion, we might not recognize this new meaning. "They just don't get it," we might sigh, shaking our heads.

I'm for bringing things out into the light of day. We all need to hold the mirror up and take a close look at our attitudes.

And I say that knowing how disappointing it is that we're not somehow above our culture, its values and stereotypes – but rather, a product of them.

If you're as old as I am, then you know that the headline is a line from Michael Jackson's Man in the Mirror.

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In praise of honesty

By George Estreich

Last year, I wrote a piece for BLOOM called Why pictures matter. It’s a short essay about an insensitive ER doctor, and its occasion is a picture I came across on the Internet. It showed a teenage boy who’d had a bad fall, and who was bruised and disoriented. The ER doc had snapped the pic and posted it on his blog, not only violating the boy’s privacy but also—in my view—dehumanizing him, by putting him on display.

I thought of this after reading Paul Austin’s recent piece, also published here. In that piece, Paul, a physician, describes attending to a young woman with Down syndrome in the ER. Because he compares the woman unfavourably to his own daughter (who has Down syndrome), and because he seems to suggest that the woman’s humanity is absent or lost, you’d think I’d agree with the comments criticizing him. But I can’t do it, because I think that the writing is powerful and valuable. To me, it’s raised a really useful conversation about why we write about our kids, and what for, and what sorts of feelings we’re willing to welcome, and most of all, how we make sense of what we read.

Full disclosure: I know Paul (met him at a conference in Iowa). I’ve read an early version of the manuscript he’s working on now, and it’s fair to say we have very different senses of what it means to have a daughter with Down syndrome. For one thing, Paul’s a lot further along than I am—his daughter’s an adult, and mine’s 11—and for another, Paul is one of those few guys whose publicly stated inner turmoil makes mine look kind of mild. There were things that troubled me in Paul’s manuscript, and I said so to him. (I’m pretty sure that, in doing so, I ruined his week in a big way.)

But I made those criticisms in friendship, and as one writer to another, and as a fundamentally constructive act: that is, in hopes that the criticisms would lead to something better (in this case, a revised book). None of those criticisms, though, were horrorstruck condemnations of his character. It’s been troubling to read the comments section, particularly the bits that attack Paul personally, and though Paul has responded in his own post, I feel I have to speak up. Paul's a deeply decent man. He’s one of us. He proudly showed me texts from his daughter while we were chatting together, and that was truly moving to me: all of us with younger kids have the future in the back of our minds, and often in the front, so to see texts sent in real time from a real adult with Down syndrome gave me hope for the future. (Worries for the future, of course, are the subject of Paul’s piece.) In any case, the idea that Paul is a stereotypical Heartless Doc is categorically false.

That’s not to say there’s nothing to talk about. For me, the excerpt published in BLOOM walks right up to the line, and probably stomps on it a little bit too. I was uncomfortable, reading it. But I’m okay with that: the best writing ought to make us a little uncomfortable, and literature is about the mysteries that are not only unresolved, but perhaps fundamentally unresolvable.

In any piece of writing, context is crucial; and the overriding context of this piece is a man seeking to illuminate his own contradictions, as amplified by crisis. It’s memoir, and should be judged as such. If Paul were a clinical geneticist arguing that all people with Down syndrome are less human and therefore should be screened for, I’d be the first to reject his argument. But he’s not: he’s a writer of nonfiction, and as such he’s not advancing a proposition, but trying to capture the complex texture of experience. If as writers we truly value honesty wherever it leads, if we value—as I think we should—the uncertain and unresolved, then Paul's piece succeeds. And if we truly believe that our children are diverse, and that the families involved with disability are diverse too, then we need to accept the entire diversity of meanings that come from the experience.

What's most troubling about the excerpt, of course, is Paul's frank expression of distaste, and his relief that his own daughter is better off than his patient. I agree that this is troubling. But it should be noted that this is far from the first time that it’s been expressed. Marilyn Trainer, in her book Differences in Common, writes about the time when her son Ben began school at six. Trainer describes seeing older students at the school. It’s a long passage, but it’s directly relevant:

“Although Ben adapted quite well, I had a problem, and one which caused me considerable anguish and guilt. I’m not proud to admit this, but I found it very disturbing to see “older” kids with Down syndrome and older people with mental retardation in general. In fact, some of the students in their teens and twenties downright scared me when I thought in terms of the future. For one thing, I was bothered by their physical appearance. Some—particularly those with Down syndrome—were quite overweight. Others were extremely thin, and a few had very small heads and twisted limbs. Even more disquieting was how “out of it” many of the older students with Down syndrome appeared. They had a certain dullness of manner and facial expression that seemed so different from the high spirits that animated kids like Ben and his friends. I couldn’t help wondering . . . . Someday would Ben be like this too? I knew these feelings were not unique with me. I had discussed them with other parents who admitted reacting the same way.”

I don’t have a problem with Trainer’s writing, at all. To criticize it is to tell her she shouldn’t feel the way she did, or that she shouldn’t expose it to view. I don’t hold with either of those, as the first is absurd and the second is unreasonable.

In fact, on the issue of being human, I’ve always been far more troubled by a moment in Martha Beck’s Expecting Adam:

“If you’ll cast your mind back to high school biology, you may remember that a species is defined, in part, by the number of chromosomes in every individual. Adam’s extra chromosome makes him as dissimilar from me as a mule is from a donkey. Adam doesn’t just do less than a ‘normal’ child his age might; he does different things. He has different priorities, different tastes, different insights.”

I find this deeply problematic, not only because Beck’s biology is questionable, but also because she is implying that all people with Down syndrome are categorically different from all people without. She implies, in fact, that “they” are actually a different species, and that their “different” tastes and so on are actually a result of the chromosome. Not only is this very doubtful—tastes, FYI, are cultural—but it at least echoes some dangerous eugenic assumptions about human categories, and generalizes vastly about all people from a single child. It’s a useful contrast with Marilyn Trainer’s piece, or with Paul’s, both of which are rigorously focused on individuals, and which are rooted in the more difficult and mutable world of feeling. Both Marilyn Trainer and Paul Austin stay well away from generalizing about all people with Down syndrome—and Paul explicitly rejects the sentimental idea that a sweet character comes from the chromosome.

It should also be noted that the self-criticism leveled by Paul against himself is as harsh (almost) as anything present in the comment threads. I don’t think he’s trying to say that people with Down syndrome who are more severely affected are less human. I think—and here, the book’s title, and the ending sentence of the passage, are crucial—he’s saying that extreme pain threatens our humanity, no matter who we are. His pain comes from both identifying his daughter with his patient, and from resisting the identification—and from his awareness that that’s what happening, which is why he describes his own feelings in terms of perversity and shame. Those feelings are not presented as timeless biological truths. They’re presented as dramatic moments, and to make sense of them, you have to read the whole passage to see how the drama turns out.

The beginning of the piece draws a stark separation between himself and his patient, his daughter and his patient; but by the end of the piece, those distinctions have collapsed. In crisis, as he narrates, he shuts down empathy to work. In a quieter moment, he gives out his phone number, he opens his family to the family of his patient. What made the ending so moving to me was the quiet domesticity of the scene, which contrasts sharply with the controlled chaos of the ER. Ironically, in that very contrast, he sees the similarities between his daughter and his patient—and transforms his memory of the event. He actually wishes for his daughter to scream as loud as his patient, if that’s what she needs, and there’s an implicit recognition that that screaming does not lessen humanity, but expresses human need. Where he begins by wanting to separate his daughter from his patient, he instead finds commonality. Pain is what threatens our humanity, but pain is also what, as humans, we all share: everyone, Madison, Sarah, Paul, need something for the pain. It’s a powerful moment, and what makes it most powerful to me is the presence of Sally: she, in effect, gives him permission to feel what he actually feels.

I think this is something that readers should grant writers, even when we dislike what we see there. The alternative is to restrict the kinds of honesty that we are willing to welcome—and, by extension, to decide who is positive enough to belong to a community of parents. None of us, I think, is hurt by frank discussions of being conflicted. What hurts us, as parents of kids with Down syndrome and other disabilities, are generalizations that treat all those kids as the same—and an insistence that our accounts be finally celebratory or positive. Because if being positive becomes a requirement, then it risks becoming oppressive too.

George Estreich lives in Oregon. The paper and e-book editions of The Shape of the Eye, his memoir about raising a daughter with Down syndrome, will be out from Penguin this April.

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A note from Paul Austin

Something for the pain was not easy to write, or easy to read. It shows me with my imperfections, trying to navigate a painful place. As one reader commented, any of us would scream in pain with an open tib-fib fracture. The pain itself can strip us of our humanity. And of course it is painful to witness that kind of suffering. That's why I gave Madison such a big dose of pain medication prior to moving her over to the ER stretcher. Madison's pain and terror were particularly difficult for me to witness because I could imagine my own daughter suffering like that.

But I meant this story to be about another type of pain, as well: the pain of having a daughter who is different from other children. For some parents, having a child with a disability may not be difficult, or painful. But for my wife and me, it has sometimes been a struggle. And as a flawed human, I've navigated it as best I could. As a writer, I've tried to be as honest as I could.

Several readers have expressed outrage. My attitude seemed superior to them. It's not what I felt at the time, or what I meant to convey. Rather, I meant to convey how disabilities, and our responses to them, sometimes reveal our character. In this story, we see me getting rattled by Madison's pain, particularly because she reminded me of my daughter, Sarah. We then see me give Madison pain relief, and sedate her so her leg can be set without her feeling it, and then help Madison's sister get in touch with resources. From an external point of view, Madison got excellent care. She got pain medications before we even moved her to our stretcher. I went and found the x-ray tech to personally ask him not to make the film until Madison had gotten her pain medication, because the x-ray technicians sometimes have to move a broken limb to make the film, and I wanted to be certain that Madison got her pain medication before they made the films: typically, in a busy ER, the doctor writes the order for an x-ray, and moves to the next patient. Unlike the orthopedist that one reader mentioned, I treated Madison with compassion and courtesy. I was her advocate. It may not have registered with the readers, but in terms of bedside manner, I did pretty well: kept Madison from hurting, talked with her sister, empathized with her sister as a father of a daughter with Down syndrome. I gave her my home phone number, so my wife could help her find resources in the community. I did the things most of us would want a doctor to do. Madison felt no pain after I started taking care of her.

I believe that some of the readers’ anger may not be from what I did, but from what I felt and thought.

Towards the end of the story, at home, I'm still troubled by the event. It's a couple of weeks later, and I feel that I failed to be caring enough, even though Madison's sister had told Sally, my wife, I'd been kind. That's what some readers may not have registered: that on the back porch, drinking a beer with my wife, I "got it," that my feelings had been muddled, and that I'd somehow failed. And my failure had been that I hadn't registered Madison's full humanity: that in the moment, I hadn't been able to see past her disability. My failure wasn't as a doctor: I'd made sure she'd gotten pain medication, made sure her leg got set optimally, and made sure her sister got resources. My failure wasn't as a father: Sarah and I had a good relationship. My failure had been as a person: to see past Madison's disability.

In my writing, I've tried to avoid self-justifying stories, because they are dishonest. I could easily have written a version of the story in which I had been an all-knowing, all-kind doctor, who gave Madison plenty of pain medicine because I was such a caring person, and had extra insight because my daughter had a similar disability. I think some people may have liked that story more. But having a daughter with Down syndrome hasn't made me all-wise. I'm still a flawed person, doing his best to navigate through times that are sometimes painful.

I can imagine a reader saying, "Of all people, a father of a child with Down syndrome shouldn't have felt that way," as if I should've been able to register Madison's full humanity, even as she shrieked in pain. But in all honesty, all I felt at that moment was the desire that the screaming would stop. I think that many people, in a similar situation, may have felt similarly.

Some of the readers may not have reflected on the fact that Madison was one of many patients I was juggling. My last shift, for instance, I was taking care of a man in his fifties who'd had a large bleed into his brain, causing him to act bizarrely (drinking from his urinal) and the medication he’d been taking to thin his blood is a new drug, and has no antidotes – he could easily have died right there in front of me, and there are no reversal agents I could give him. His CT scan had this huge blossom of blood in his brain, and there was nothing I could do about it. At the same time, a young woman with twins, at 16 weeks gestation, came in with vaginal bleeding. One of the twins miscarried right onto the ED stretcher, this tiny purple human, dead lying on the clean white sheets, and not revivable (at 16 weeks a fetus can not be resuscitated.) I wasn't sure if the other twin would still be viable or not, so I paged OB, to get some help, but the other twin soon miscarried as well. The father, who looked to be in his twenties, never took off his sunglasses. Both of these patients were squeezed into a shift that was already awash in suffering.

What I'm getting at is that the community, and particularly "the disabilities community" can be extraordinarily stringent in their expectations of doctors and nurses. The nurses and doctors in the ER are often overwhelmed by the burden of pain we see, by the violence that enters the ER, by the intoxicated, hostile patients, and by the just plain old heartbreak of what we see, day after day, night after night. Most of us are doing the best we can, balancing the needs of multiple people, many of whom feel that their need and pain is the most pressing.

I've learned a lot from being Sarah's father. But I still have a long way to go. There may be parents of children with disabilities, who – seeing a child with worse disabilities – don't feel a guilty twinge of relief that they've been spared the worse disability. I believe that for many of us, though, that even as our hearts go out to the child with disabilities and to their families, we're grateful that we were spared that extra bit of pain. We just don't admit it to other people, or maybe even to ourselves.

If we look at this story, we see that I gave Madison a strong dose of pain medication. I sedated her so her leg could get set. I offered her family help in getting to resources. I felt relief that Sarah wasn't as disabled as Madison. I felt conflicted the entire time. By the end of it, all I am left with is the hope that if my daughter screams in pain, someone will hear.

I think that may be what is so disturbing about this story: that we have to trust the world to be kind to our children, when even we, sometimes, have problems seeing past the disabilities of some one else's child.

Photo of the Austins at the beach

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Something for the pain

"A stunning account of the chaos of the emergency room," is how the Boston Globe described Something For the Pain: Compassion and Burnout in the ER, written by Paul Austin, an emergency-room doctor in Durham, North Carolina. But what most interests me about Dr. Austin is his upcoming book about raising his daughter Sarah: Beautiful Eyes: Notes on Down syndrome, fatherhood, and what it means to be human. I thought being a physician and parent of a child with disability would give Dr. Austin an interesting perspective. I asked him if he'd write a guest blog for us and he suggested we share this chapter from Something For The Pain—about a time when his emergency-room work and experience with Down syndrome intersected.


A high-pitched shriek scaled up and down, piercing the normal noises of the ER: the squawking of the paramedics’ radio and the retching of the homeless man in the hallway. I grimaced and glanced over to room 27. “What’s in there?”

“Broken leg.” Joanne, the charge nurse, said. “Down syndrome.” She held out a clipboard.

I liked working with Joanne, who is a small-framed woman with gray-blue eyes and feather-cut hair. Over the years we’d worked together, I’d enjoyed our quick snippets of conversation about favorite books, vacations, and kids. She knew that my sixteen-year-old daughter, Sarah, had Down syndrome, but her tone carried nothing personal. Busy shift.

I stiffened from the unexpected tweak of pain as I imagined Sarah screaming like that. I hesitated to reach for the chart. The paramedics had been hammering us all evening and I was maxed out. I didn’t have the reserve to deal with anything extra. But the other doc was getting ready to go home, and I didn’t want to listen to the screeching until the next doctor came on duty. Taking the clipboard without comment, I walked to the room. I’d focus on the injuries, get her in, get her out.

“Mama mama mama,” the woman on the narrow EMS stretcher screamed over and over. Her left leg angled out to the side, just above the ankle, like a freakish extra joint. Her slanted eyes were open wide, and her crowded yellow teeth overlapped unevenly. I felt for a pulse at the top of the foot to see if the fracture had disrupted the arterial flow; without a good blood supply, the limb wouldn’t survive. The pulse rose and fell under my finger, fast and strong. I clicked my pen and marked the spot with a small blue “X.”

“Let’s move her over.” Barry, the head paramedic, grabbed a fistful of sheet under the screaming woman.

“Stop.” I looked from him to the heavyset woman standing off to the side, clutching a pocketbook. “You are her . . .” I had to speak loudly to be heard over the incessant shrieking. I tried not to scowl from the noise.

“Sister,” she said, in an equally loud voice.

“Paul Austin,” I said, “one of the ER doctors.” Our conversation was like the ones I’d had as a firefighter in my twenties, straining to talk clearly and loudly enough to be heard over the noisy confusion of a working fire. “I want to give her some pain medicine. Is she allergic to any medications that you know of?”

“Peanuts.” The sister shook her head. “Only peanuts.” She winced and bent forward slightly with her shoulders hunched, as if the screams were hailstones beating down on her.

“She get hurt anywhere else?”

“No.”

“What’s her name?”

“Madison.”

I walked to the head of the paramedics’ stretcher, and gently placed my hand on Madison’s chubby shoulder. “Madison?” I patted her arm.

“Mama mama mama.” The shrieking didn’t change in volume, pitch, or rhythm.

“Madison.” I took a roll of fat between my thumb and finger and pinched, gently first, then harder, hoping to get her to focus on what I wanted to tell her. She continued screaming. Her eyes looked like those of an animal with its leg in a trap, understanding nothing of the pain that wouldn’t go away.

“Let’s give her some Dilaudid and Phenergan before we move her,” I said to Lisa, the nurse. I wanted the shrieking to stop, and the pain medication would help.

“You don’t want to get her on our stretcher first?” She pointed to the woman’s forearm. “She doesn’t even have an IV.”

“Leave—her—where—she—is.” I pronounced each word distinctly. “Start an IV. Give her 1 milligram of Dilaudid and 12.5 of Phenergan. Repeat the Dilaudid if you need to. Then you can move her.”

The paramedics and nurses stared at me. We usually move the patient from the EMS stretcher to ours before we start working on them. Partly because the paramedics need to clear the scene and get back into service, and partly from habit. But my first priority was getting the room quieter, which required that we get the woman’s pain under control. I looked Lisa in the eyes. “IV, pain meds, then move.”

“Okay.” She let out a deep breath, shrugged, and snapped an IV tourniquet around Madison’s stubby, fat arm.

I stepped over to the sister. “We’ll have her feeling better in just a minute or two. I’ll go get her X-rays ordered.”

I hurried out of the room, eager to get away from the wailing. I felt bad that Madison was hurting so much, especially since she didn’t understand what was going on. But her screaming penetrated in an almost physical way. I was ashamed for feeling more irritation at the noise than concern for her pain, but beneath my crust of irritation was something too complicated to get into at the time. I wrote orders for leg films and put them in the ward clerk’s rack.

“What’s wrong with her?” Carol, the ward clerk on duty that night, was about my age. She enjoyed a bawdy joke and was pleasantly efficient, so I liked working with her. But she also had a sweetness of spirit that helped to counterbalance the casual cynicism that comes so easily when working in an ER.

“Broken leg.” I walked away. If I’d told her that Madison had Down syndrome, she’d have said, “Poor thing,” or, “Bless her heart,” and her unfussy tenderness would’ve opened up the feelings that I didn’t want to deal with. I needed to get through my shift without seeing any similarity between my daughter and the injured woman whose bleating and screeching made her seem less human.

I walked to the X-ray room. The X-ray technicians are often “travelers,” techs who’ve found they can make more money doing fill-in work through agencies. Some are good, some are bad. That evening, the tech was a guy whose name I didn’t know, but he was good. Crew cut, stocky, quick. “Need a tib-fib in room twenty-seven,” I said.

“Portable?”

“Sure.”

He grabbed a film cassette and slid it into a compartment of the wheeled machine.

“Don’t move her till she’s had some pain meds.”

“Okay.” His battered white machine made a whirring sound as he headed for the room.

I listened for Madison’s screaming. Quiet. I went into the room.

“I gave her the second milligram of Dilaudid,” Lisa said. “Zonked her.”

I nodded. “Good.”

“Can we move her now?” Barry asked.

“Sure.” I moved to the other side of the stretcher and grabbed an edge of the sheet to help pull. “And thanks for giving us a minute.”

“No problem.”

When we hefted her over to our stretcher, Madison moaned, but didn’t open her eyes. Closed, they looked almost exactly like Sarah’s baby pictures, slanted inward, almost masklike in their exotic curve. She had a small pug nose like Sarah, and a large forehead. But I doubted that her face had ever been as animated as my daughter’s, or could show as much intelligence, humor, and grace. I couldn’t imagine Madison knowing every movie Julie Andrews had ever made, or the names of the actors who played the twins in both versions of The Parent Trap. I couldn’t imagine Madison raising her right eyebrow like Sarah did, when emphasizing an ironic point in conversation. Sarah was in the “high-functioning” class at school, read books for preteens, and could make her own connections between books she’s read and movies she’s seen. Madison looked liked she’d belong in the “severe and profound” class, maybe “trainable mentally handicapped” at best. These are gradations that no parent would want to learn, but once you have a child with Down syndrome, you’ll gladly take what you can get.

I turned to Madison’s sister. “How did she break her leg?”

“Fell down the steps of the back deck. The wood was wet and slippery.”

After the tech had made the X-rays, I asked the sister the standard questions. Madison was twenty-nine years old and, other than Down syndrome, was healthy. Hadn’t hit her head, no loss of consciousness. No other injury. She lived with her parents. I did a quick physical exam, and then turned to the sister. “Let me know if she starts hurting again.” With the room quiet, I felt I could relax a little. “It’s obviously broken.” I pointed to Madison’s lower leg. “After I see the films, I’ll call orthopedics.”

The orthopedic resident returned his page and I described, as best I could, the fractures through the two bones that run parallel, forming the lower leg. I was hoping to relay the information quickly, and move on with my other patients.

“How angulated are they?” he asked.

“About fifteen degrees.” Some ER docs are really good at describing X-rays over the phone, using all the correct terms, precisely and quickly. I’m not great at describing radiographic findings, but I’ve been doing it fifteen years, and I know when a fracture is something I can splint and send out, and when it’s so complicated that an orthopedist needs to come down to the ER. The resident physicians will sometimes ask multiple questions, looking for reasons I should splint the fracture and send the patient home without their involvement. Even on a good day, it can be irritating. And in this case, I knew that the resident would have to come down and see the patient, no matter how well I described the fracture. When he came in, he could look at the film for himself.

“Both the tibia and the fibula?”

“One’s probably less angulated than the other, but they’re both comminuted.” “Comminuted” means that instead of a simple fracture with clean ends, there are chips and chunks of bone at the fracture site.

“So, which one is worse?”

“The tibia. I don’t have the film in front of me,” I said. I was feeling defensive, and his insistence at asking more unnecessary questions was irritating me. “Probably be best if you just come in and look at the films.”

“So, you don’t know which bone is more comminuted?”

“Look, this ain’t a fucking quiz show. If you don’t want to come see the patient, you need to tell me now so I can ask your attending to come in.” I waited a second, and then hung up. What a day—screaming patients with Down syndrome, ortho residents with attitudes. I looked at my watch. Four more hours to go.

I went back to Madison’s room, still frustrated with the ortho resident. “She feeling better?”

Her sister had been sitting in a blue plastic chair. She stood, and walked over to the stretcher. “Seems to be.”

“When the orthopedist sets the bones, I’ll give her more pain medicine.”

The sister brushed Madison’s hair from her forehead. “Thanks.”

“She lives at home?”

“With my parents.” Madison’s sister shook her head. “But they’re getting old.”

We stared at Madison’s face.

“I have a sixteen-year-old with Down syndrome,” I said. “Named Sarah. We’ll be looking into group homes when she gets older.”

Madison’s sister turned her face to look at me, dark circles under her eyes. “I’ve talked with Mom and Dad about it, but they’re . . .” She shrugged.

“It’s hard,” I said, looking back at Madison’s placid face. “But Sarah’s looking forward to getting out of the house, having some independence.”

“I think Madison would, too,” the sister said. “But my parents are used to her being at home.” She looked at my face. “But as they get older . . .” She stopped.

“It’s a hard transition.” Was she afraid Madison would eventually have to move in with her? I didn’t want to sound like a salesman for time shares in a group home, but if I could assuage some of the guilt Madison’s sister might feel for thinking about finding a place for Madison, it might help. “When Sarah’s brothers graduate from high school and move on to college, she’ll finish school and move on to a group home. If she didn’t, she’d feel like she’d been left behind.”

“I think it would be good for Madison, too,” her sister said. “If only Mom and Dad could accept it.”

We stood quietly for a moment, and then I went to check on my other patients.

The ortho resident, a tall guy in green scrubs and a short white coat, looked at the films, and went to talk with Madison’s sister.

Earnhardt and I sat in our little dictating booth, working on charts. “I had to tighten up on the ortho resident,” I said.

“Yeah?” Earnhardt looked up at the resident, then back to the prescription he was writing. “What’d he do?”

“Kept pimping me about an X-ray. I couldn’t tell if he was jerking my chain, or if he was just trying to understand the fracture.”

He shrugged. “Always seemed pretty reasonable when I’ve talked to him.” He tore the script from the pad.

“Now I feel like an asshole.”

“Don’t.” Earnhardt snapped the script under the clip on the clipboard. “If he didn’t deserve it this time, he will the next.”

When I walked into Madison’s room, the ortho resident was talking to her sister. He ignored me. “We’ll pull the bones in line and put a plaster splint on tonight. It’ll take a couple of days for the swelling to go down, and then we’ll put a cast on it.”

“Conscious sedation?” I asked. The orthopedic residents are rarely comfortable sedating a patient for a procedure, and I was offering to help.

“Sure,” he said, without looking at me. “That’d be great.”

Fair enough. We didn’t need to be best friends to get Madison’s leg taken care of. I ordered the medication to sedate Madison, while the ortho resident got his plaster ready. We didn’t exchange ten words.

When we were done, I went to dictate the chart, still feeling bad for barking at the resident. I knew I’d feel lame trying to explain that the screaming woman who looked so much like my daughter had made me feel vulnerable and clumsy. And I didn’t plan to confess my sensation of inadequacy at describing X-ray findings. No reason to get into all that; but I did want to apologize for being an asshole over the phone. But by the time I’d finished my dictation, he’d gone.

* * *

I checked up on Madison a couple of times. Even after the sedation had worn off, her face remained slack and expressionless; her Down syndrome was much more severe than Sarah’s. I found this perversely reassuring: My fears that my daughter would someday wail incomprehensibly in an ER diminished somewhat. Sarah would never feel or sound like an animal with its leg caught in a trap; even in pain, she’d still be Sarah, her humanity intact.

Back in Madison’s room, I spoke one last time with her sister. “Do you know about the ARC?”

She shook her head.

“The Association of Retarded Citizens.” I pulled a paper towel from the stainless steel dispenser over the sink in the corner. “They offer respite care. Someone can come out to look after Madison while you go take a break. They can also help you look into group homes, activities, movies, dances, stuff like that.” I clicked my pen. “What about the Comprehensive Chromosome Clinic? Heard of them?”

“Huh-uh.”

“It’s a clinic with a doc who knows a lot about Down syndrome, a cardiologist, a physical therapist, an occupational therapist, every specialty you need to see, all in one morning.” I wrote Sally’s and my name on the paper towel. “My wife, Sally, used to work there.” I wrote our phone number and address under our names, in clear block print. “Here.”

Madison’s sister took the paper towel and looked at it.

“Sally keeps up with this stuff better than I do. Give us a call, and if she answers, tell her I took care of your sister here in the ER. Don’t worry—people call her about Down syndrome stuff all the time.”

I rarely give out my home phone number to people at work, and most of the ER docs have unlisted numbers. We serve a troubled, sometimes dangerous population, and we instinctively keep work and home separate. There’s too much turmoil and pain at work to risk letting it spill into our homes. The simple cases aren’t so bad—a kid with a laceration on the forehead from standing too close to a swing set, or a guy with a fishing lure dangling from his ear—these are innocent injuries that heal and are over as soon as we take the stitches out. But we see too many examples of long-standing meanness and indifference—guys with their eyes beat shut, women whose boyfriends have given them gonorrhea, kids with diaper rash that’s been ignored until the whole perineum is puffy, red, and weeping. It’s not surprising that we try to peel away our work, like a pair of gloves, before going home.

A couple of weeks later, I was at home sitting on the back porch, reading Empire Falls by Richard Russo, the bill of my ball cap shading my eyes from the last rays of the early evening sun. Sarah had finished her homework and was swinging on the front porch swing. John and Sam were up the street playing with friends.

Sally backed through the kitchen door and onto the deck, a beer in each hand. She was wearing a denim wraparound skirt over a black leotard. She’s still taking two dance classes a week. Every year they give a recital, and Sally wonders if she’s getting too old to perform, but there are always a couple of the younger ones glancing over at her, trying to keep up. I’m proud she’s still dancing. Plus that, she looks good in a Danskin top.

“Beer?” She carried two Coronas, each with a small wedge of lime floated inside the clear glass bottle.

“Thanks.” I held my place in the paperback with my finger.

She handed me one of the beers, and with her free hand corralled a big handful of her hair, lifting it away from her neck. Sally’s fifty-two, and quit dying her hair about five years ago. She’s one of those lucky women with thick, riotous curls of hair that keep looking better as more gray and white streak through it. She calls it “the new blond.”

Sally took a sip of her beer. “Did you recently take care of a woman with Down syndrome? Broken leg?” She let the hair flop down over her shoulders.

“Oh, yeah,” I said. “Wouldn’t stop screaming till we snowed her. I gave her sister our number. Didn’t think you’d mind.”

“Not at all.” Sally sat down in the black metal chair next to mine. “Had a good chat. Gave her a bunch of names and numbers.”

“Thanks.” I sipped my beer, enjoying the fresh tart hint of lime.

“She said you were really nice.”

“I didn’t feel like it. This girl was so profoundly retarded.” I took another sip of the beer. “Kept screaming and screaming.” I shook my head. “I kept thinking how glad I was that Sarah isn’t that bad off.”

“Sister said you took good care of her.”

“Huh.” I stared at the wedge of lime. “I gave her the pain medicine mainly to get the room quiet—I was treating myself more than I was treating her.”

“Maybe neither of you deserved to suffer.”

I looked at her. Even after twenty years of marriage, and even factoring in her background as a psychiatric nurse, I’m still surprised at how much wiser Sally is than I am.

Sarah came out onto the back porch. “When’s supper?”

“Soon,” Sally said.

“How was work?” Sarah stood by the door. A couple of years ago she would’ve run right over for a hug, but she’d begun to show a little more reserve during her teen years. I was glad to see that develop. People often tell me, when they discover that I have a daughter with Down syndrome, that “Down syndrome kids are so loving.” Their tone suggests that I should be pleased to hear this bit of folk wisdom. But the assertion seems facile. The kind of thing a dog owner might say: “I just love my beagle—he’s so calm,” or, “We had to get rid of our Scottish terrier; she was smart as a whip, but so hyper.” It somehow turns the ability to express love into another stigma of a medical condition, like slanted eyes, decreased muscle tone, or an underdeveloped occiput.

Who knows? Maybe the conventional wisdom is right. Maybe people with Down syndrome do have an easier time showing affection, just as people with autism seem to have a harder time. But I didn’t want to view Sarah’s affectionate personality as the result of a chromosomal abnormality.

“Work was okay.” I held out my arm for an embrace.

She put one hand on her hip and tilted her head. “No hug for you today.” She turned, and sauntered back into the kitchen, laughing at the joke she had played on me.

I laughed along, glad that Sarah was confident of our love, and could tease me about it. Underneath my laughter, though, I was vaguely fearful—someday she may lie in someone else’s ER with a broken leg, and I won’t be there to help. Like Madison, Sarah might have to scream to get relief. But if she has to, I hope she yells and shrieks until someone brings her something for the pain.

Something For The Pain was published in 2009 by W. W. Norton & Company.

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Health: Does it come in all shapes and sizes?

Last month I sat in on a bioethics session where health providers discussed 2012 media stories with a health ethics angle.

One was about using costly growth hormone in kids who are short (but who are healthy, not growth-hormone deficient and otherwise typical).

In this National Post story, two parents in a custody battle couldn’t agree on whether their healthy son should receive daily growth-hormone shots at a cost of $30,000 a year over many years.

In this case the healthy boy’s predicted adult height without the injections was 5’3.” Growth-hormone treatment might give him an additional 1.5 inches.

One health professional at the bioethics talk questioned whether it was fair to deny a child the opportunity to do something in adulthood that depends on size—like being a firefighter—by restricting growth hormone treatment. What if a healthy but exceptionally short child has dreams of fighting fires?

Because I was once a parent demanding growth hormone for my son Ben—whose short stature stems from a genetic condition—I understand how extreme shortness can be viewed as a physical disability in a world designed for big people.

However, having given my son shots of growth hormone six nights a week during a six-month trial many years ago, I question the treatment of what I now believe is more of a social, than physical, disadvantage.

Can't we promote a vision of health that is more inclusive of different body types?

Can a gain of one or two inches in final height justify daily shots over a decade that cost as much as a mortgage?

There are all kinds of studies showing that tall people make more money and have other advantages in life. This 2004 Journal of Applied Psychology study found that a person can earn an extra $789 per year for every inch above average height they are.

“There's plenty of evidence to suggest that height—particularly in men—does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.

Just before Christmas I was driving home and heard a CBC radio interview with bestselling author and New Yorker staff writer Adam Gopnik. I haven’t read any of Gopnik’s eight books but I have read some of his brilliant writing in The New Yorker.

When asked “If you could change one thing about yourself what would it be?” this is how he answered:

“I wish I just had six inches vertically because I am a very short man and unfortunately and truthfully being short is a deeply limiting condition in every sense. I think that if I had been somewhat taller my life would have taken a completely different line. And though people don’t admit it, the sense that the short are fundamentally jumpy, nervous and needy is built into that and the tall man is always the man who is the calming leader.”

For someone who’s achieved remarkable success in his career, Gopnik’s wish to be taller struck me as unimaginably sad. I think he's right about the prejudice against short people. But to go through life in a healthy body feeling that your height prevented you from a certain greatness makes me shudder. What kind of world are we living in?

Instead of being gatekeepers to drugs that are driven by the social stigma of being short, how can we work for a world in which a child’s opportunities don’t depend on height and other attributes of appearance? Wouldn't that be a kind of disease prevention—with huge savings in medical and psychological costs? What can be done to change public attitudes so that we expand our notions of health? Can't wellbeing come in all shapes and sizes?

My son’s trial on growth hormone didn’t work and we took him off it.

But sometimes I imagine how I would have felt if we’d given him shots six nights a week for 10 years, and then had to face up to the fact that he was one or two inches taller than what he'd have been without it. I know I would have been wracked with guilt and the sense that I'd made the wrong choice. At the time I was gung-ho to reduce the limitations a genetic syndrome placed on my son. But it's painful to remember the times my younger daughter would alert my son that I was getting the needle ready and he would run to hide in a different part of the house.

To think that this treatment is gaining use with families of children who are otherwise healthy is troubling.

I think we have a critical role to play in challenging stigma so that kids and adults can live in the world without interventions to make their bodies fit social norms.

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