Wednesday, June 26, 2013

The invisible mom

By Sue Robins

In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids. You'll find these same circles at mom and baby yoga, the new moms' group, the kids' hip hop class and community soccer.

In the 10 years I've parented my son Aaron, I’ve never cracked that circle.

I've walked past 
that circle hundreds of times and nobody has ever shiftedever so slightlyto give me room to join in.

I’m the invisible mom. You’ve seen methe mom with the son with the visible disability.

This is the part about inclusion that’s hard. Most days I breeze past, pretending I don’t care that I’m not standing with those neighbourhood moms in their Lululemon outfits, baseball hats and ballerina flats. When I’m feeling vulnerable, I put my own hat on and charge past, willing myself not to look up lest my eyes fill with tears.

This is what different feels likeit lives tight in my chest in the place where tears are born. I’m so intertwined with my son Aaronand protecting him from this painthat my pain gets all muddled up. If I know I’m different as a mom and I don’t belong, how soon before he knows he's different as a kid? Or does he know already? I shake my head and file that unbearable thought away.

I once heard the head of inclusive education for our school board give a presentation about building friendship opportunities for our children. “You parents of children with special needs need to make an extra effort,” she said smugly.

That comment infuriated me at the time and it infuriates me now. She told us to host "extra fun" parties at our house and invite children from the classroom. Her message was that we need to overcompensate for our kids, because they'll be excluded by parents of typical children.

So the reason my son has had only one birthday party invitation from school in the past two years is because I’m not extra-fun enough? If I was super-fun, would my requests for play dates for Aaron get answered?

Instead, my little notes and contact information slipped into backpacks are ignored, and I'm at a loss for words to tell Aaron as to why Matt isn’t coming over to play.

Aaron’s teacher tells me the kids talk in the classroom about inviting Aaron to their birthday parties. But I dig through that damn backpack every evening, and I’ve never found an invitation.

If I could summon up all my boldness, I’d march right up to that circle of moms and ask why they're ostracizing my sweet, vulnerable son. I’d ask them if they’ve ever been left out and how that feels. I’d ask why they are doing that to my 10-year-old boy, who loves Bey Blades, Lego and X-Box just like their boys do. I’d tell them not to be afraid of Aaron, and that if they can’t understand him when he talks, I’ll help translate. That I’d supervise on the play date to make sure things went well. That Aaron is a little boy who just wants to have friends.

It's as if our society has no responsibility to include those who are different. Is it only up to us, as parents of children with disabilities, to force ourselves into their circles and demand social inclusion for our children? Remember: a community who excludes one is not a community at all.

I do know that Aaron needs to feel beloved. (And so do I). Because that’s what we all crave in this world.

Late Fragment
By Raymond Carver

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

Sue Robins is a writer, speaker and mom of three in Edmonton. Her youngest child, Aaron, 10, has Down syndrome. Sue consults on family-centred care with children's health centres, and has spoken to health professionals around the world about partnering with families, the value of peer support, and how to meaningfully engage families in the health system. Two of her essays about Aaron have been published in the Globe and Mail.

Monday, June 24, 2013

'Carly's Café' wins international award

This video by Carly Fleischmann and her dad Arthur won the Silver Lion award in the cyber, public service category at Cannes Lions International Festival of Creativity, held in France.

It gives people a sense of what it's like for a person with autism to go out for coffee.

Arthur Fleischmann, who co-authored Carly's Voice: Breaking Through Autism with his daughter, speaks at a BLOOM speaker night here Tues. Sept 17 from 7-9 p.m. To register, e-mail

Stories are 'companions' to patients in care

Sociologist Arthur Frank gave a moving account of how stories allow people with illnesses and disabilities to imagine new positive identities.

In his keynote at the International Narrative Medicine conference in London the University of Calgary professor said that following a heart attack and cancer diagnosis in the '80s: "I needed medical information and treatment but I also needed people's stories. The stories of other ill people were not readily available."

In providing a forum for patient stories, Frank said narrative medicine "amplifies voices that are scarcely more than whispers."

It then connects those voices with others experiencing the same thing, giving them credibility and power.

"When voices are brought together and shown to be saying the same things, in their different ways, then they can become a force and get people to take them seriously."

Patient stories "take care of people," he said. "They are companions in a relation of mutual care."

People are empowered to share their story through the accounts of others, he said. "Stories beget stories."

Frank spoke about the positive influence of the hospice movement in moving "care" to the foreground and treatment to the background. "We trained doctors to think of their primary task as listening to patients' stories and helping them feel comfortable." 

Frank spoke about how illness can take away our desire to live and stories "give us the courage to continue to desire things in life."

He said that storytelling is a way to externalize and examine our fears. "Your fears will destroy you unless you externalize them and that's why we tell stories."

He also spoke about how people facing illness or disability need to find their own "style or flare. Stories are how you discover the next viable you. Think of the need of someone who has just been paralyzed to have an imagination of a self he really can be."

He spoke about an author who had lost a breast to cancer but who felt happy with herself and upbeat when she showed up for her first appointment following surgery. Instead of affirming this woman's confidence, the nurse questioned why she wasn't wearing a prosthesis, noting that anything was "better than nothing."

He described this conversation as an assault on this woman's "right to define and claim [her] own body."

Frank noted that patients and health-care providers each have stories that need to be shared. "The ill don't hear about the vulnerabilities of [clinicians], and [clinicians] are running too fast to hear the hopes and fears of patients. And that is truly a pity that impairs everyone's life."

Patients adapt stories to fit their circumstances and clinicians need to be co-creators, Frank said.

He talked about an occupational therapist who was fitting a child with a mask. "'Now you look like Batman,' she said enthusiastically. She was giving Willie a style, an imagination of a self he really can be."

Clinicians need to listen to patients to understand how they are reimagining their lives given their illness or condition and "make yourself part of the story.

"Stories show how artful human beings can be in the face of suffering," he said. "Stories hold me up. They are my basis of being. They are weapons of the weak."

Saturday, June 22, 2013

A doctor struggles with her 'patient' shoes

A family physician from Israel spoke about being asked to counsel a couple considering terminating their fetus with Gaucher's disease Thursday at the international narrative medicine conference I'm attending in London.

What made this encounter unique was that Dr. Ruth Kannai from The Hebrew University of Jerusalem has Gaucher's disease herself. The condition causes an enlarged liver and spleen, skeletal disorders and bone pain.

Dr. Kannai was asked by a medical colleague to speak with the parents.

She recounted how she began the phone call feeling "omnipotent" in her role as doctor and capable of separating the professional from the personal. But, she said, she was quickly flooded with unexpected childhood memories about her condition that left her feeling confused about her position.

Because the couple had already spoken to a geneticist and doctor, Dr. Kannai recognized that she represented the fetus, or patient. "You should really speak to my mother," she told them.

Dr. Kannai described her life as a doctor, wife and mother of four, focusing on her abilities and describing her childhood as happy and normal between hospitalizations.

The woman on the phone asked her: "What do you do when the child has pain?" Dr. Kannai explained that as a child she took pain killers, rested and wore splints. But she said that at this point in the conversation she felt like a "failure. I felt my words were empty and hollow and I wondered how I had gotten myself into this mess."

Only later did she realize she'd left out how difficult it was for her parents to work and support the family when she lay in the hospital for weeks; the resentment her sibling voiced about the attention she got; and the way her father cried when she was hospitalized.

Co-presenter Einat Avrahami, a professor in the department of English at The Hebrew University, noted that the woman was concerned about her own suffering as a mother "deprived of the maternal ability to relieve pain in her child. The question of pain trumps most other issues" in prenatal genetic consultations, she said.

Avrahami said this was "confusing the disability trait with the whole of a person's life."

She also said that the conversation between Dr. Kannai and the parents ignored the social construct of disability, where "disability is situated in the individual and the solution for the problem is put in the hands of clinicians and it's the responsibility of the individual to overcome their impairment."

Avrahami noted that when the question is framed as "whether a couple should terminate" as opposed to "whether they should continue the pregnancy" the question isn't neutral to begin with and "highlights the medical intervention of abortion."

Dr. Kannai said she regretted speaking with the parents because she couldn't separate her role as doctor from that of patient.

However, she said parents whose fetus has a prenatal diagnosis need access to real-life stories from families of children living with the disability, or to be able to speak directly with families, so that they can make an informed decision.

When she learned the couple she had spoken with had aborted their fetus, she felt "angry. I hadn't succeeded in selling myself as successful enough or worthy of life."

She wrote about the experience to try to better understand it. "Something important happened here, but I can't explain it with the tool kit I received at medical school."

Dr. Kannai spoke about how as a sick child she wanted to become a doctor. "I was choosing sides. It's possible to be either a patient or a doctor, but never both. There is a struggle to leave illness outside the profession."

She noted that student doctors are taught that their personal story will interfere with patient care and that it's paramount to remember that "the patient is the one with the disease."

However, suffering is a universal human experience, she said. The reality is that patients and doctors have wounds. "If the doctor denies her wounds she may be unable to listen to her patient's cry for help."

Dr. Kannai quoted psychiatrist Carl Jung: "Only a wounded doctor can treat effectively." She said that when doctors don't acknowledge their own wounds, they put themselves above their patients and can't have equal relationships.

When I asked Dr. Kannai about whether it's ever appropriate to share a personal story about illness or disability, she said professional boundaries are there primarily to protect doctors. Sometimes providing the best care means breaking the rules. For example, she's had a hip replacement and when a patient considering the surgery asks her about her experience with the procedure, she shares it.

Dr. Kannai later told her 12-year-old son about her conversation with the expectant couple and asked what he'd do if he found himself in that situation in future. Would he want to terminate?

"Don't be silly!" he said.

Dr. Kannai said she has found meaning in her experience with disability but recognizes that the search for meaning "is personal and non-transferable."

She said that when she translates her patients' stories into "the language of suffering" required in a medical file "the real story is not told. When I'm offering objective information, I feel I'm faking it."

Wednesday, June 19, 2013

Stories convey emotions of care for patients, doctors

I'm in London, UK at a conference by the International Network of Narrative Medicine about the power of storytelling for patients and families and the doctors, nurses and therapists who work with them.

This morning on the hotel elevator I bumped into two attendees from Brazil. One is a psychiatrist who coordinates a graduate medical school program in Brazil. The other is a theatre actress working with this medical school to develop simulations to promote empathy in professionals.

The psychiatrist told me that the medical training there is very technical and they want to infuse it with storytelling that can build understanding. She noted that stigma in Brazil makes people with mental health issues (her field) invisible and I noted how this is a similar issue with disability.

Dr. Rita Charon, the founder of the Columbia graduate program in narrative medicine, opened the day by recognizing "the commitment and potential of our work in narrative medicine to change the face of health care" by making care "full, respectful, attentive and hearing." She said that professionals have a kind of wisdom that comes from being so near to illness and death. And she noted that the human body -- with the same organs no matter who you are or where you live -- is a unifying force.

The keynote was given by David Small, author of Stitches, a graphic memoir which was a finalist for the National Book Award. It's the story of his harrowing childhood with a depressed mother who took out her fury on her sons; being diagnosed with thyroid cancer at age 15, which seemed to be a physical manifestation of his mother's silencing of him as a person; and a surgery that left him initially speechless and then regularly without a voice. His saviour came in the form of a psychoanalyst who provided the wisdom and love over years that his mother couldn't. Small talked about how the body often expresses what our minds can not.

He wrote and illustrated his book, he says, "because at age 52 I still felt like a troubled boy of 14 or 15, but I didn't want to go there alone. I needed more psychoanalysis" but he lived on a prairie in Michigan far from health care. So he attempted to adopt his analyst's attitude himself, "staying still and listening patiently and empathizing with my story, without getting too involved."

This afternoon I attended a workshop about how narrative medicine is being weaved into the medical curriculum in Argentina, the United States, Britain and Israel.

One powerful image was a comic strip that was shared with students. It was created by a couple who are both doctors and who had a premature baby with many medical problems. I couldn't understand the Spanish captions, but the pictures conveyed the sense of this couple being rendered powerless by the technology in the neonatal intensive care unit.

The Argentinian speaker noted that students are presented with a case of a child with a medical condition and then asked to write stories from the perspective of the patient, parents, siblings and physician. Many of the exercises are aimed at getting students to learn how to see different points of view.

A physician from Paris talked about how medical students rated their satisfaction higher when asked to do reflective writing about their clinical experiences than when asked to read scientific articles about narrative medicine.

A psychologist from the medical school at Brown University described the goal of narrative medicine for students as "thinking about thinking and developing a reflective professional self."

She noted that reflection is "not necessarily intuitive" and needs to be taught. Students write about their experiences and receive feedback from peers and faculty.

The goal is to expand their perspective from "doing the work of a physician" to "being a physician" and "attending to the emotional process of becoming a doctor."

Monday, June 17, 2013

A mom's passion for AAC eclipses her son's


By Stacey Moffat

My son Carter and I recently attended our first Breaking the Ice Conference for people who use augmentative and alternative communication (he's holding his voice device in the photo above). This year the conference offered a children's program I thought Carter would enjoy. We attended for the full day so Carter could participate in the children's program and then we'd have lunch together and watch a Town Hall meeting with adult AAC users.

As the day approached I was excited about how great it would be for Carter. He'd have fun and be inspired and motivated by others who use talkers just like him.

But by the end of the conference day, my rose-coloured glasses were a bit tarnished, I think. Carter was eager to attend the children’s program and enjoyed tracing his body and then decorating the craft paper with information about himself (see masterpiece posted behind him above). But if he'd had his way, we would have headed home after that.

Carter was the only person with a talker at the event who walks, and it was a real challenge because he didn't want to sit down. Inbetween activities he kept busy going up and down escalators and was having so much fun that when I told him we were all done and it was time to go back to the event, he had a meltdown. 

After we ate, I introduced him to Jess and Emily, two amazing young ladies I met last year when I attended a condensed version of the conference. Carter liked looking at the girls' talkers because they were different from his. He examined their name tags and was thrilled to be able to say their names using his talker. Jessica is programmed into his people page because it's his teacher's name and Emily is programmed into his toy page because it's the name of one of his toy trains.

these encounters didn't last long.

Carter was determined to find the perfect spot to play with the Lightning McQueen car he takes everywhere. I let him wander while I stayed in my seat and tried to keep an eye on him. A lovely conference organizer noticed my craning neck and offered to walk around with Carter. The two ended up cozied up in a corner reading books while I watched a presentation about AAC mentors put on by Barbara Collier of CDAC and several adult AAC users. Of course I'd already heard about the program and signed up for a mentor!

felt a strong pull to the AAC community because Carter hasn't officially been diagnosed with anything other than global developmental delay. That means we've never had a place in any one disability group, like autism, cerebral palsy or Down syndrome. As a result, I think I've been on a mission to embrace the AAC community as "our group."

But it's 
a diverse group and it's a challenge connecting with members because the opportunities are few and far between. I guess it's natural that when I hear about something, I jump at it. But sometimes I lose sight of what it is I'm looking for, and whether it's suitable for Carter.

In reflecting on our experience at Breaking the Ice, I realize that while I'm driven to take part in all things "AAC," my nine-year-old son, like most young boys, isn't.

When we finally sat down for the Town Hall meeting, Carter pointed to the door and signed "car" over and over again. Thankfully, a mom who I’d met earlier and whose son was in the children’s program with Carter, came along with her iPad. She put on a TV program for Carter to watch (without sound) and that kept him somewhat entertained.

Once things got underway with the meeting, I hoped Carter might listen to the AAC users who answered questions (they'd been given the questions in advance so they could prepare). The questions included "What inspires you?" and "What keeps you motivated when conversations move too fast and it becomes difficult to add your own comments?"

Several wonderful responses were shared. Comments like Jess's brought tears to my eyes: "I am inspired by my mom. She has always been there for me. She is an incredibly strong, outgoing individual who never gives up on anyone. Even if she's going through a rough time, her courage and strong will inspires me."

In hindsight, I can't blame Carter for not taking an interest in what the adults had to say. I'm pleased we were able to attend a small portion of the meeting, but I recognize that the meeting was much more interesting for me than it was for Carter. What nine-year-old boy wants to sit through a meeting of adults? 

Perhaps the best is yet to come from our experience at Breaking the Ice, and that's the opportunity to provide feedback to the conference committee.
I can think of lots of activities that Carter and other children who use AAC might find motivating for future sessions (beyond riding the escalator!). Maybe they could have a Town Hall meeting of their own. By sharing my input, future conferences can be shaped in a manner that will draw more young families like ours, resulting in more participation from children.

I'll continue to get involved with AAC events because I enjoy connecting with others in the community and I want to stay educated. I'm glad that I finally have a community to embrace. But from here on in I'll think more carefully about Carter's involvement. Instead of feeling the need to take part in an event just because he's an AAC user, I'll first consider what Carter might get from the experience.

he truly enjoy himself, or would he be happier hanging out at home?

Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada on the Executive Committee. She blogs about raising a child who communicates differently at More than Words.

Friday, June 14, 2013

When we can't take the pain away

A week ago I took part in a think tank to develop simulations that could be used to teach rehab professionals aspects of family-centred care.

I sat at a table with another veteran parent and half-a-dozen professionals and we shared personal stories about health-care interactions where communication broke down.

By looking at some of these challenges, we hoped to come up with ideas for how to share medical information in a timely, clear, non-judgmental way that was useful to the parent given their unique story.

Mona Lee, an occupational therapist at Holland Bloorview, talked about how difficult it was to tell the parents of a young child that they needed to consider a wheelchair for the child when the parents still hoped the child would walk.

It was easy for me to imagine this scenario because when my son was young there were times when I refused to let go of a dream I had for him, even when presented with evidence that it was unlikely.

What I hadn’t really thought about was how it would feel to be the professional in that interaction. Thanks Mona! Louise

When we can't take the pain away
By Mona Lee

I work with children in our integrated education and therapy program in the Bloorview School. The program integrates therapy and self-advocacy into kindergarten and Grade 1 to ready the children to be successfully included in their neighbourhood school in Grade 2.

When students come in junior kindergarten, their parents typically have big hopes that daily therapy will boost their child’s mobility. If the child has been in private therapy, the parents have often been given the idea that their child will eventually walk without assistance.

What parents often don’t understand is the degree of independence a child needs to participate in a regular school class: to walk long distances, including outdoors or on a field trip, and if using a walker, to be able to move on their own and safely, without the assistance of a therapist.

By the end of JK here there are some children who haven’t made the functional gains that would suggest they’ll have this mobility. Their parents need to consider getting the child a wheelchair. We like to plan this so that the child has the whole of Grade 1 to “work out the bumps and glitches” and get comfortable using the device they’ll use in the community school.

We know that when students move to their local school the amount of support they get plummets.

Suggesting to parents that they consider a referral to seating for a wheelchair is the most challenging talk I have with parents.

Some parents have strong spiritual or cultural beliefs that support their hope that their child will walk. These parents may do yearly journeys back to their home country, pray and engage in other spiritual activities to keep this hope alive.

They may not hold Western values about the importance of independence. In fact, they may not realize that full independence is an expectation in our neighbourhood schools. In their culture people with disabilities may not be seen publicly, so it may be hard for them to picture their child using a wheelchair in the community.

In other cases, parents may be convinced that with just a bit more practice their child will be able to build the endurance needed to manage at the community school.

Whatever the case, I always feel anxious and almost afraid to bring up the topic of wheelchairs. Part of what we learn in school is that we’re there to encourage hope, not take it away. We’re there to support and provide what the client and family needs to keep moving forward and feeling empowered and enabled.

But sometimes I feel that I’m imposing our Western values on families. This is Canada, and here a child isn’t supposed to have a caregiver with them 24/7. If they can’t get around independently, we give them a mobility aid. But maybe the family is from a culture where there is greater interdependence. Maybe that’s their only reference point.

As a professional, it’s part of my job to explain to the family the parameters the child needs to function within in a regular school, and to explain what the reality will be in terms of the lack of supports.

As human beings we relate when we can share personal stories and be vulnerable to each other, but as a clinician I’m regulated by a college with very specific guidelines. I have to maintain a professional stance and use objective wording and that part I find hard.

Some parents are able to hear what I say, and acknowledge that we’ve tried many things over the year but their child’s present function isn’t where it needs to be.

Parents may be quite tearful and emotional, but say they knew this talk was coming.

Other parents say they’re not ready to consider a referral to seating. Some will take the referral but not attend the appointment.

Sometimes parents are at different places of acceptance and need time to come to agreement.

Sometimes we need to wait and then come back and reassess the parents’ readiness. Sometimes as the child grows larger, the parents recognize the physical reality of the situation: They can’t as easily just scoop their child up to move them.

Some children may be vocal about wanting to try a wheelchair.

I think the most important thing is that I accept what I think the parents are feeling when we have this conversation. I need to work with that, and not go in there thinking I have the magic-bullet solution, because I don’t. It’s that touch of humility. I know I can’t take the pain or struggle the parents are experiencing away.

I think this is a place where families and professionals can meet. It’s a place where we both have that mutual understanding that there isn’t a quick fix.

Wednesday, June 12, 2013

A circus performer adapts to life with paralysis

Carolyn Pioro talks candidly about the physical and social aspects of adapting to quadriplegia. Carolyn mesmerized everyone with her honesty and grace. Thank you Carolyn! Louise

Monday, June 3, 2013

When imagination fails

You have an eight-year-old daughter with severe disabilities. You and your partner have just brought her to the operating room for major surgery. But instead of setting up camp in the waiting room, the two of you leave the building:

"Laura and I crossed half the street to the grass-fuzzy median in front of the hospital. We lay next to each other, the lanes on either side of us quiet, trickling riverbeds."

This is a scene from a short story called Poppyseed in A Guide to Being Born by Ramona Ausebel.

I'd read Ausebel's first novel No One Is Here Except All of Usa fantastical account of a village of Jewish families in Romania who reinvent their history to save themselves from the Holocaust.

I loved that book, and the way Ausebel creates such strikingly vivid and unconventional ways of seeing and feeling things. But by the end, some of the storylines had become a bit too over the top for me. 

I really wanted to like A Guide to Being Born, and I was captivated by her first story, about a group of grandmothers who find themselves on a ship at sea, metaphorically awaiting death.

But many parts of Poppyseed—which revolves around the care of Poppy, 8—didn't strike me as authentic and real. The idea that the parents of a completely dependent child who can't speak would leave a hospital where they've just delivered her to surgery is so far from my experience of parenting, or that of other parents of severely-disabled children I know, that it felt like an annoying sliver lodged in my foot.

As my vulnerable child is being put under in the OR, the last thing I'd consider doing is asking my husband to come outside and lie down on the grass.

I'd be sitting in the waiting room, with a boulder in my chest, trying to slow my breathing. I'd be forcing my abdomen to rise on the inhale and on the exhale sending positive thoughts to my son and his medical team. I'd be hyped up, vigilant, on the off-chance that there's a problem and the doctor needs to speak with me.

I'm not sure why I was so bothered by the parents' divergence from my own experience in the story Poppyseed.

I had no idea when I began this new collection of short stories that one would be about parenting a child who doesn't speak or think like other children, one who spends her days on her back, looking at the ceiling or the sky.

Parenting a child with severe disabilities isn't a common theme in fiction and is poorly understood in the mainstream. Our culture spares no expense in attempting to prevent the birth of such children—who are viewed as inhuman and tragic—and little on trying to understand and support the experience for parents who find themselves navigating this strange new world.

So perhaps Ausebel's depiction of the interior lives of such parents took on a sacred urgency for me.

Can writers do justice to something they've never experienced? Is it possible to "imagine" the complex feelings that swirl around parents of a child with severe intellectual and physical disabilities? No, I don't believe it is. Some things need to be lived.

Parents of children with severe disabilities are full of ambiguity—they see-saw between joy and grief, contentment and wishing things were different, exhileration with their child's presence and angst with her inability to meet cultural expectations. Their love is messy and intense. But as with any parent-child relationship, the child is the parent's world.

So when the father in Poppyseed refers to his daughter in second reference as "our mute and immobile kin" and "our stunted eight-year-old," it doesn't ring true.

Not because in a dark moment a father might not use this language, but because one would expect his everyday narration to be marked with affection.

Ausebel's story then wades into an ethical minefield when the parents, seemingly on the advice of one doctor (do parents of children with severe disabilities EVER do anything on the advice of one person, medical or otherwise?), choose aggressive medical treatments to keep their daughter forever small, in keeping with the way they view her mind.

Many of you are familiar with this intervention—dubbed The Ashley Treatment—after a nine-year-old girl with severe developmental disabilities at Seattle Children's Hospital was given high estrogen doses to hasten closure of her bones' growth plates and had her uterus and breast buds surgically removed.

Last year The Guardian reported on the first boy to undergo an equivalent procedure.

I won't describe the parents' bizarre (some would say savage) reaction to the fictional Poppy's surgery (which involves leaving the hospital again, while their daughter is being sewn up).

I was so disappointed when I thought of all of the people who will read this story—most having no connection to someone with severe developmental disabilities.

In an interview with The New Yorker about the book's theme of parenthood Ausebel says: " kept feeling like the only way to represent just how strange the (very real) experience must be was to push the stories into the fantastical. Those exaggerated elements added more of what was already true, allowing me to see the experience better, like magnification."

I don't think Poppyseed has conveyed the depth of love (however challenging) that exists between a parent and a child who will never achieve conventional milestones, a child who will remain largely invisible and unknown to the outside world.

You'll have to let me know your thoughts.