Two dads adopt a son with autism

Here is the first video in A Family Like Mine, a new BLOOM series covering diverse families raising children with disabilities. 

Meet Rob and Dave, two dads who adopted a son with autism. 

“We have a nephew with special needs and we’ve seen what they’ve had to go through and fight for,” Dave says. “We thought it was the right thing to do.”

Initially their son was fascinated with the movement of trains, doors, locks and washing machines, but as he’s grown comfortable with his new family, his ‘stimming’ behaviours have faded. He’s doing well at school after receiving behavioural intervention (IBI) therapy.

Rob and Dave wondered whether having gay dads would be challenging for a kid who already had autism, but he’s thrived.

You may remember this BLOOM post Rob wrote about their adoption. This video will be captioned this week. Hope you enjoy!

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Two moms, one ill baby, and the best care

My dear friend Janis Purdy is speaking today on a SickKids panel celebrating PRIDE week. Here she writes about parenting a child who was born with serious medical problems and the hospital care—often kind and empowering and sometimes challenging—she and her partner experienced as two gay moms. Thank you Janis! Louise

By Janis Purdy

I remember all the people and intensity in the room when Jonny was born. I remember him being whisked away from me and wondering if I would ever hold him.

I remember touching his hands and feet. I remember his omphalocele looking bigger than his body. I remember his curved spine, his yellowish pallor and his old-soul eyes.

I remember his isolette, his PICC line, his NG tube, the IV in his head, his wound dressings twice a day. His daily dose of medications. His failure to thrive. I remember infections and green bile and TPN.

I remember a spontaneous bowel perforation. I remember emergency surgery. I remember praying desperately. As Anne Lamott writes, all my prayers were either “Help”, “Please” or “Thank you.”

I remember six long months in the NICU.

I remember two open heart surgeries, chylothorax, chest tubes, pain in his eyes, and a hernia surgery. I remember three months in the cardiac intensive care unit. I remember the NJ tube, low tone and the discharge plan.

I remember all the good, smart and kind people. I remember the sharp looks, the insensitive comments, the mistakes.

I remember leaving Sick Kids. I remember being so happy and so scared at the same time.

I remember emergencies and admissions and back and forth and in and out for a year. I remember feeds every three hours around the clock and dressing changes and meds that got stuck in his tube and I remember being very tired.

I remember his abdominal closure surgery. I remember a nurse in the surgery recovery room bringing him a brand new Thomas the Train toy.

I remember little friends who got better and some who didn’t.

I remember how much Jonny always loved his big brother. From the moment they met. And I remember his remarkable will to live and his incredible spirit of life and love.

I remember OT and PT and speech and language and oral aversion. I remember being completely humbled by Jonny’s strength and endurance.

I also have different memories that relate to today’s topic: Insights and Ideas for Creating an LGBTQ Positive Space at SickKids.

I remember growing up being taught that lesbian and gay people were dangerous to children. And that trans people were mentally ill. I remember a lesbian who lost custody of her children when she came out. I remember hiding and covering up and feeling ashamed.

I remember a nurse in the NICU asking if Diane and I were married. I remember that opened a door to a lovely conversation.

I remember a nurse practitioner in the NICU asking me, of my older son, “Does he call you mommy or mama?” It showed a wonderful level of insight.

I remember introducing our children’s biological Dads to the staff, and their grandparents, and their aunties and uncles of all genders and being amazed at how nice they all were in trying to understand and support our unconventional family.

I remember the receptionist calling Diane, Mr. Purdy once. She was so apologetic when she realized her mistake. Like red-faced and tripping over herself. I felt sorry for her. I began to call Diane Mr. Purdy after that as a joke.

I remember an older nurse sharing that she was gay too. That was nice and it helped us feel understood and comfortable. I appreciate that she shared that confidence in us.

I remember a younger nurse discussing the finer angles of lesbian motherhood with us.

I remember a GI doctor we’d never met before. We were not having a good day and he walked into our room without knocking, as they are want to do. “I’m Doctor X” he said looking between us. Then he asked, “Who is the mother?” I responded “We both are.” He seemed irritated. “Who is the BIOLOGICAL mother?” Instant tension. My partner tried to diffuse it with a joke “It sounds amazing but we both are!” He looked at her without smiling. “Who are you and why do you need that information?” I said. Sound of horns clacking. “There are many medical reasons we need to know who the biological mother is.” That was a bad start. Hard to get over a bad start.

I remember a social worker in the cardiac ICU asking us the kindest, most thoughtful questions about our family situation. She was concerned about whether we had enough support going home. Gender was not an issue.

I remember sometimes feeling angry at the world and dark and ready for a fight.

I also remember feeling so lucky and thinking, if anyone can handle this, we can. With our age, our experience, our families, our friends, our financial security, our good health… we’re going to be able to handle this. I remember thinking, Jonny chose the right family. And feeling so grateful.

I remember meeting moms and dads from all over Ontario, from little towns here and there and some who were very religious and some who had never met a lesbian before but it was all okay because here we were all surviving and hanging in there together. It was all about the kids and the diagnosis and the treatment and the prognosis.

I met people at SickKids, and made friends here, with people I’m not sure I would have crossed paths with in any other way. And that was good for me.

I remember a doctor here, someone I deeply respect, and will always love in a kind of hero-worship way, telling me that he thought Diane and I were great parents. I think I burst into tears, which would have been disconcerting for him, but that is how much I appreciated what he said.

When you grow up thinking you can’t or won’t be a parent, or you’re holding onto an ancient fear that other people will judge you, or dislike you before they’ve met you, or when you’re used to fighting and you’ve got your dukes up for no good reason, those little compliments and small indications of care, and empathy, well they can blow up your well-constructed walls and bring down all your defenses and really soothe your soul. Which is a really good thing for any parent of a sick child.

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Does disability make us human? Or is it a threat?

By Louise Kinross 

In the last couple of days three stories on social media jumped out because they portray such different, opposing, pictures of what disability means in our culture.

Last night CTV reported that Swiss genetic lab Genoma used a family photo of a child with Down syndrome belonging to a Canadian family in a building-size banner to promote their prenatal test for diagnosing Down syndrome in a fetus.

The photo was used without consent or knowledge of the Canadian family.

Genoma says it acquired the image legally through a stock photo company and is taking legal action against them.

It's both horrifying and not surprising.

Horrifying that a parent would find a beloved photo of their child in an ad suggesting that a child like her should be aborted. And not surprising in that a company is trying to illustrate in its ad the reason for, or 'benefit,' of their test.

What is surprising is that a company wouldn't think twice about purchasing a stock image of a living, breathing child and using it to promote public questioning of the worth of children like her.

It reminded me of when a Duke University researcher contacted me last year to let me know that my son's rare genetic deletion was now on the list of disorders identified by microarray analysis of a fetus’s DNA. I wrote about how that felt, a bit of a knock-out punch, here.

Earlier this week The New Family posted this story about two Canadian moms who set out to adopt with one request: they wanted a child with Down syndrome. This is how one of the moms, Holly Graham, explains it:

"Rewind 25 years to when I was a little girl. I had a best friend named Mandy who just happened to have Down syndrome. She was fun, loving, friendly and magical. I always knew Mandy was different, I didn’t know why, and it didn’t matter. I just knew that I loved every single thing about Mandy. One day I came home from school and proclaimed to my mom that I was going to have a baby just like Mandy one day!"

And now Holly and her partner Alex are the proud parents of Jaxson, age 1, who has Down syndrome.

On the one hand, you have an entire industry devoted to preventing the birth of a child with Down syndrome. And on the other, you have a couple who choose to parent a child with Down syndrome.

And finally, there was this piece published a couple of days ago, which I read this morning, about British anthropologists who suggest disability itself is what made us human from an evolutionary standpoint, promoting our social, empathetic, flexible natures. This line of thinking fits with the views of French geophysicist Xavier Pichon, who helped create the field of plate tectonics.

As Xavier told BLOOM in an interview: "What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long term] of those who have been affected by major suffering and handicaps. I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most."

So where does the truth lie?

Earlier this week my team met with Dr. Peter Rosenbaum, a former chief of medical staff here who heads up the CanChild Centre for Childhood Disability Research at McMaster University. Yesterday Peter, a developmental pediatrician and children's rehab researcher, was awarded Holland Bloorview's Medal of Excellence in Childhood Disability.

He noted that medicine has swung too far to a biomedical, science side focused on "cure," forgetting that the most important quality in a health professional is human "care."

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Why can't you just forget 'that thing?'

This is an excerpt from Lisa Bendall's latest book Magic Moments: Twelve Little Stories About Disability, Family and Fairly Normal Life. Lisa is a Toronto writer who lives with her husband Ian, who has quadriplegia, and their daughter Emily. Her blog www.50gooddeeds.com shares inspiring ways to make the planet a better place. Thanks Lisa!

By Lisa Bendall

“Do you have a driver’s licence for that thing?”

If my husband and I had a dollar for every time we’ve heard that, we would have our mortgage paid off. Paid off? Heck, we wouldn’t even have had to take out a mortgage in the first place.

“You’re a pretty good driver in that thing!”

My husband uses “that thing”—namely, a power wheelchair—for his mobility. So of course his manoeuvring skills are not too shabby. After all, he’s had a couple of decades of practice at it. Usually, that’s the kind of response he will muster, accompanied by a weak, patient smile.

“I know what it’s like—my father’s in one of those things.”

Oh? And his lessons in wheelchair etiquette went right over your head?

“That’s a pretty nifty way to get around, eh? I wish I had one of those things!”

You’re looking for a shortcut? Allow me to give you the starting push.

Anyone with a wheelchair user in the family is familiar with openers like these. We hear them so often we could write a top-10 list for David Letterman. And we probably all have a ready store of sarcastic retorts—although, admittedly, we usually put them to use only in our imaginations. At least, I do. Thus far, I have not been able to summon the nerve to reply to a “So, what happened to you?” with a “Nothing—but hey, what happened to you?”

Deep down, we know they mean no harm. They’re just looking for a way to make conversation, and for some reason my husband’s wheelchair seems to them a much more fascinating icebreaker than something so mundane as the weather. In truth, though, I think we could be trapped in a blizzard, and the person trapped with us would still be asking my husband how fast “that thing” can go. And they wouldn’t be asking so he could go for help.

This summer we visited my husband’s uncle and realized that the new weather-stripping he had installed at the front door since our last visit had transformed a tight passageway into an insurmountable one.

As we made this discovery, and realized we would need to change strategies and take the back door, my uncle-in-law’s neighbour came bounding across the street. Rather than introduce himself, the first words out of his mouth were: “My mother’s in one of those things!” And then, as though he had just uttered the secret password at an exclusive club, he proceeded to wrench the wheelchair away from me and struggle against the impossible doorway.

Believe me, it took a few minutes to wrench it back—he was stronger than me.

I wish the general public could learn from their children. Kids are so much easier to deal with. They have yet to learn that individuals with disabilities are anyone other than ordinary people with really cool accessories. The most frequent greeting we get from children in public is not “You’re fast in that thing!” or “A kid in my class is in one of those things!” but: “Hi.”

Hi… Simple, yet classy. I like it.

I suppose we’re a little further progressed than we used to be. It wasn’t that long ago when people with disabilities didn’t even get to the point of exchanging words with children. At least those days, when parents yanked their children out of a wheelchair user’s path faster than you could say “Elephant Man,” are becoming less frequent. Disability is not as contagious, I guess, as it once was.)

I only hope the public gets comfortable approaching people with disabilities sooner rather than later.

Personally, my tolerance will last only so long. Otherwise, the next time someone asks my husband if he’s “always been in that thing,” my inquiry about what they’ve “always been” just might not be printable.

 

 

 

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When humour, stories are the best medicine

By Louise Kinross

When Emma Evans (right) couldn’t sleep in the middle of the night after a bone and muscle-lengthening surgery, the best medicine was a Holland Bloorview nurse who told her funny stories.

“I had very bad heel pain,” Emma, 14, recalls. “I wasn’t sleeping great and I didn’t respond well to high-intensity meds. It was a tricky situation. My nurse Katie Hauer (left) was able to help me calm down and not focus too much on the pain by telling me funny stories about herself and asking me about my interests. This distracted me from difficult pain and, since we knew more about each other, it was easier for me to communicate and feel more comfortable.”

Emma says that nurses who took the time to know her interests and tell her a little about themselves best helped her forget the pain. “Talking about the pain—about where it was and what it felt like—made it worse. It was hard to describe. But if we mixed talking about the medical situation with non-medical conversation and humour, I was able to stay calm and feel better.”

Emma says she liked Katie’s approach because Katie would acknowledge how tough the pain was, but then get her talking about something else.

Katie, who works on the complex-continuing care unit, says the way she connects with each child is different. “You have to figure out what that person needs. Some children might not want to hear silly stories or want to joke around. It can be challenging when you first meet a patient to really find a connection. It takes time and patience and thinking through what each individual needs. I really like working here because you have an opportunity to enter into a really intimate space with a person and you have to bring yourself to it. It has to be authentic, particularly for a teen who will sense it if it isn’t genuine.”

To get to know clients and parents, Katie asks a lot of questions. “I always try to pull the patient out first. Who is this person? What is their sense of humour? What do they like to do? What are they comfortable with or not comfortable with?”

Talking with parents about their unique expectations is important, Katie says. “Everyone is so different. Some parents want to do as much as they can for their child and don’t necessarily require as much support as others. I like to say: ‘How can I support you? What are your needs?’”

Katie says nurses and parents need to work as partners. “It’s so important to work together. There has to be a mutual understanding of each of our roles, and how we can best support the child together. Grace needs to flow both ways between parents and nurses.”

Emma says that sometimes it can be challenging to feel comfortable with your medical team when there’s so little time for non-medical interactions. “That’s why I feel it’s important to spend time talking to the patient about their interests and, if you’re comfortable, to share a bit about yourself.”

Creating relationships “is the biggest part of how I care and nurse,” Katie says. “Relationships need to be valued and honoured. When Emma was in a lot of pain, I could have met all of the standards as a nurse by giving her the prescribed interventions, like pain medications. But I needed to take more time to figure out how to relate to Emma in the midst of what she was experiencing. I have always appreciated the power of stories—how therapeutic they can be, and how they help us relate to one another in very real ways. With Emma, it was simple: I was 14 once and thought about what would have helped me if I was in her shoes.”

Emma says that even when nurses do medical tasks with her like taking vital signs or changing bandages, “using humour, stories or conversation makes the situation better and more fun for everyone.”

During her most difficult times, “Katie’s humour was the best strategy that worked for me,” Emma says.

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'Making friends' an unexpected rehab gift, parents say

By Louise Kinross

Jimena Ortiz and Ricardo Menendez say one of the greatest gifts of their son Sebastian's inpatient stay at Holland Bloorview was the friends he made.

Because of life-threatening seizures, Sebastian, 16, wasn't able to go out with school friends in the past. "We didn't allow him to go anywhere alone so he missed trips with school," Jimena said on Friday as they were packing up to leave. "He felt like he was alone, and different from the other kids. His self-esteem was very poor."

Sebastian came to Holland Bloorview in March after brain surgery to remove an area thought to be causing his seizures.

"We are so blessed to be here," Jimena said. "He had physio, speech therapy, school, occupational therapy and so many groups where he got to meet other kids: a teen support group, the lunch club, and a cognitive group. The staff helped him work on social skills and looking people in the eye and he's going home with so much confidence. He's made three very good friends. He says he's not alone anymore and he has friends that understand him. The experience in the hospital gave him an attitude of being more understanding of other kids and of their parents."

Sebastian didn't have a seizure for six weeks following his surgery, but did have three shortly before he was discharged. "The big goal was that he be free of seizures but we are generally feeling more optimistic. Sebastian has a hope to be normal: to be able to drive, go to sleepovers and parties and trips with friends."

Jimena says she benefited from getting to know other parents of children who were hospitalized here. "I've made some good friends too. It's been an unbelievable experience to see parents with a pure love for their kids."

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The blame game

By Louise Kinross

This morning I woke up with a sense of dread. My chest felt like an aching black bruise.

I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night. 

Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.

I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.

I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).

Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred. 

The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.

The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

"There's nothing you could do to reduce unequal crossing over," Dan said. 

So how is it that 21 years later I could be hit with such a massive sense of guilt? 

We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.

This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."

And the corollary is that if your child is born with a disability, you did something wrong. 

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First steps for a boy attached to an oxygen tank

By Louise Kinross

A couple of weeks ago I got to meet the most adorable child you see above. His name is Branko, and he's almost four, and his mom Jennifer Philp Zakic had written this exquisite piece for BLOOM about having another child after Branko was born with a rare genetic condition.

Jennifer called me from the lobby at Holland Bloorview to let me know that Branko was in the rehab gym on the second floor taking his first steps in physio. 

So I got to race up and meet Branko and his mom and dad and sister, and watch this precious little boy hold his arms down tight at his sides to stabilize himself, kind of like a penguin, and take small steps back and forth between two tables (see photo below). His task was to pick up coloured plastic bugs from one table and bring them to the other table where he matched them to pictures of the bugs. 

Branko was ecstatic with his progress and it was a beautiful moment to share.

To read more about Branko, check out this long interview with his mom: Branko, 3, has bones growing out of his chest.

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Why I don't believe 'disabled' dolls invoke pity

By Louise Kinross

I was so psyched when I heard that British toy company Makies was creating dolls with disabilities and differences, like a birthmark on the face, in response to the #ToyLikeMe campaign run by parents of kids with disabilities.

So when I saw this New York Post piece by Kirsten Fleming criticizing the move, I was puzzled.

Kirsten writes that she has a "massive birthmark" on the left side of her face. Growing up with a doll that looked like her would have "magnified the very thing I learned not to focus on," she writes. And more than that, she argues that creating dolls with disabilities or "quirks" that set them apart is "code for condescending pity."  

I think Kirsten is wrong.

When our family adopted two children from Haiti 10 years ago, it was painful to take them into a mainstream toy store and find only white dolls. What does it say to a child when they don't see themselves mirrored in the culture around them?

Creating dolls that look like real kids, whether it's different races or abilities or with birthmarks, doesn't generate "pity" for those kids. It allows those kids to see themselves reflected back, and it allows their peers to make kids with differences part of their imaginative play. 

Last year 10-year-old Melissa Shang and her sister Eva got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability storyline. Melissa has a rare form of muscular dystrophy and is the only student in her class who uses a wheelchair. "I hope they learn how it feels to be in a wheelchair and how it feels to be such an outsider in middle school," she told BLOOM in an interview. "Most importantly, I want them to know I'm just like them."

American Girl declined, missing what appeared to be a slam-dunk marketing opportunity.

I think Kirsten Fleming is a lone voice. And there's something mean-spirited about her words, as if she's really never gotten over being singled out for her own birthmark. 

In her piece she recounts the story of a family with a toddler with red birthmarks covering her legs in this way: "They complained that when they went out, her splotchy legs drew persistent stares. How inconvenient for them."

What do you think?

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Sisters: 'Look at me, I'm disabled too!'

By Jessica Geboers

When I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and began riding around the room calling out, “Look at me, I’m disabled too!” She wasn’t trying to be offensive or insinuating that I, somehow, had it better; she only wanted to fit in and have fun like me.

I often ask my mother what she thinks BLOOM readers may be interested in reading about. In addition to her own personal experience of raising me, she now belongs to a Facebook group where moms of children with cerebral palsy share stories and advice. Mom suggested that I write about siblings, given that parents in the group often express concern about not spending enough time and attention on their able-bodied children because their child with a disability requires more care. They also worry, she said, that they might be putting too much pressure or responsibility on their children without disabilities to pick up the slack.

These concerns seemed reasonable, even for larger families with many children without disabilities. Like any good journalist, I decided to begin with some preliminary Internet research to see what had been written on the subject. What I found focused mainly on siblings of children who had severe disabilities and required constant care.

While this is obviously a reality for many families, it didn’t apply to my family. I am moderately disabled and able to take care of myself for the most part. Growing up, my parents always told my siblings—sister Avery, now 17 and brother Jared, 15—and I and anyone else that was around that I was part of the family but that our family didn’t revolve around my disability and me. This meant that while I may have needed extra care, my parents were also mindful to make time for Avery and Jared as well. So, for all the time they spent playing with the toys and adaptive equipment while I went through physiotherapy, it could be said that they were just killing time until Mom dropped them off at gymnastics or hockey.

In a lot of ways, this was Avery and Jared’s normal. Mom recently reminded me that it wasn’t until my sister began school that she realized that not everyone needed ankle-foot orthoses or had sisters who were disabled. Every morning Avery sat on the bottom stair trying to put my AFOs on the way I did, while telling Mom that she couldn’t go to school without leg braces. Before then she hadn’t known any different. Avery even learned to walk pushing my walker around the front lawn.

Obviously, Jared, who came along two and a half years after Avery, had a wider frame of reference, but he was still rather desensitized to my differences. Once he learned to walk, his favourite game was running away with my canes. He learned very quickly that I couldn’t get around, let alone get them back from him, without at least one of them. (This is when I learned to get around the house with the aid of the furniture and walls; from which point onward Mom cursed me as she scrubbed my fingerprints from the walls.) Once Jared began to talk, he would yell, “You’re nothing but disabled!” whenever he got mad at me. “Thanks Tips” was often my response.

When I was around eight, and we still lived within walking distance of our grandparents’ house, Dad would often walk us over to visit them. I would drive the grey Power Wheels Jeep my parents gave me as a reward for using my quad canes for two months straight. My sister was strapped into the passenger seat with a pillow for support and always fell fast asleep (how she slept through my jerky stop-go-stop-go driving no one could quite understand). Our green wagon, the one with two seats and a door, was attached to the back carrying my canes and whatever else we needed to bring. Dad, with seemingly endless patience, strolled slowly behind us.

Avery grew into what my mom calls a “Mensa baby” because she not only reached all of the expected milestones in a way that I had not, but she did so quite early. My parents couldn’t help but be shocked and impressed. Not long after she crawled, she walked, climbed and ran. One of her favourite activities for a time was dismantling her crib, escaping from her room and climbing into bed with me (although I now find this funny and cute, at the time I had mixed feelings). To try to remedy managing a wheelchair and a double stroller, Mom briefly entertained the idea of putting Avery on a harnessed leash of sorts. This was short lived however, as Avery quickly began behaving like a dog in public, and I encouraged her by laughing shamelessly and patting her on the head. From then on, the kids would take turns riding on my lap.

The juggle and struggle of three kids, one with special needs, never stopped Mom from taking us on trips and activities. Together we have flown countless times between Toronto and Edmonton and Palm Springs to visit family, and been horseback riding in Banff and white water rafting in Jasper. Mom told me that rarely if ever did she worry about how to manage us until we were on our way and she had no choice but to figure it out. 

A great example was rafting: When our 20-something instructor, highly attractive, shirtless and with a nipple piercing, saw me struggling to walk over the rocks to the boat, he picked me up out of nowhere and carried me to the boat to sit with him. I was 15 and mortified that my mother might tease me, as she looked like she could barely contain her laughter. Although it wasn’t always easy, I really appreciate my mother’s determination to do these sorts of things with us. Not only has it given us all wonderful family memories, but it has also taught me not to be held back by a potential struggle because it could be worth it for the life experience.

As the oldest I’ve spent a lot of time babysitting and caring for my siblings while my parents worked. This included playing house with my sister while she used my canes to pretend she was disabled too; watching movies while pretending our living room was a movie theatre; trips to the park, me with my walker and them on Jared’s Power Wheels dirt bike; and making grilled cheese, Kraft Dinner, chicken nuggets or tea and toast—the only foods they’d eat for years.

When my brother and sister began school, I assisted with kindergarten and primary school homework. When they bathed I would answer the call to rinse soap from their eyes and check their hair was free of shampoo. To accomplish a lot of these things I taught them how to “help me help them” by carrying things, opening doors or climbing up on the counter to reach dishes I was too short to reach (thanks to my short stature of 4 foot 9). I may not have always appreciated this time with my siblings, but in hindsight, I love this time with them! They were so funny and cute, and it made me feel good to play a helpful role in my family. I’ve also realized, as I’ve gotten older, that it’s helped me to prepare for the possibility of having my own children.

However, this isn’t to suggest that there was never any jealousy. We battled from time to time for the upper hand, as many siblings do. But, likely due to the age gap between the kids and I, most of the jealousy came from me rather than them. I’ve always admired the apparent ease with which they did things, and I never wanted to see them waste their potential—especially when it came to their education. The struggle to accept my physical disability is definitely real—and at times, ongoing—but I’ve always been particularly annoyed with the limitations of my learning disability. Although I’ve often enjoyed school and achieved good grades, I’ve always had to work hard to achieve them. (I think one of the reasons school has always been so important to me is that, unlike my CP, I have a bit more control over it and can more easily combat it with time and effort).

Avery, on the other hand, is quite naturally academically inclined. I’ve always felt that if one can do well easily, one should. So I’ve always encouraged the kids about the importance of school. In reaction to Avery’s apparent ease, both my parents and I have always praised her while unintentionally developing an expectation of her success. And although it is difficult for me to know the full extent, we have learned in recent years that this expectation resulted in Avery putting a lot of pressure on herself. She feared disappointing us if she did not keep it up. We now make an effort to praise her accomplishments without any implied pressure. Jared has always been far less bothered by such things, and is quite easy going in general.

When Avery, Jared and I would argue while growing up, Mom would often remind us to be kind as we may need each other one day. This always bothered me because I took it personally to mean that I may not be able to remain independent as I aged. More recently, I realized that Mom only wants us to be able to depend on each other as family. It has also been an interesting realization for me, now that the kids are older, that I can depend on them to help me. 

For instance, when we were at the West Edmonton Mall’s indoor waterpark a couple of years, Avery and Jared worked together to assist me: in inner tubes, we all linked together, with me in the middle, to keep me from floating too far from them in the waves. Later, Avery held me up as we walked out of the pool towards my canes. Mom was so happy with this that, we later discovered, she took a photo and sent it to Dad. More recently, when I injured my back in a fall, Avery came to Toronto to look out for me. Jared, while he is less likely to volunteer, will help me if I ask him to carry or reach something. I see the effect of growing up with me more so in the way Jared responds to and is tolerant of others who are different. While the other boys made fun of another boy in his class with CP, Jared did not, and was mindful to help him when needed (even though, Jared told me, he did find the boy a bit annoying, but not because of his disability).

During my research in preparation for this piece, I asked Avery if she had ever been jealous of me or worried about caring for me when we were older. She told me she’d never been jealous, except when I went to Easter Seals’ Merrywood Camp: “That made me a bit jealous,” she said, “because it looked like fun.” As for caring for me, she’d never given it much thought because I was older and she’d always seen me take care of myself. “I’ve just thought that maybe we should live in the same city,” she said, which we soon will. 

Avery recently rented an apartment in Toronto with a friend in my building and will be studying at the Ontario College of Art and Design in the fall. Not that I think Avery moved here for me. It just so happens that we both love Toronto. But it will be nice to have her close by. As much as I hate to admit such things, maybe Mom was right: we may need each other one day.

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Dear doctor, therapist, nurse and teacher

By Louise Kinross

I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.

Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and the health professionals who work with them. 

A must-read chapter in the book is directed to clinicians—doctors, and also therapists, nurses, social workers and teachers. It includes 10 suggestions. I am including the first four below (the following belongs to Julie Keon and is copyright 2015). Please read these and share with the clinicians you work with.

1. I do not think you are God. There is far too much pressure placed on doctors. They cannot, and should not, have all the answers. Nor can they prevent catastrophic outcomes. As much as you deserve tremendous respect (as all of us do), you might be relieved to know that I do not hold you up on a pedestal or expect you to perform miracles. You are human, and I do not expect you to predict the future or a life expectancy. Nor do I expect you to know exactly what is going on with my complex child. I appreciate it when, with all of your years of experience and knowledge, you can look at me and tell me that you do not know the answer. I do not need either shaky hope or dark predictions. What I do need is the truth as you know it, regardless of whether or not you believe I am able to handle it.

2. Be aware of how long I have been on this path. If we are meeting for the first time because my baby was born just days or weeks earlier, please keep in mind that I am exceptionally fragile right now. I am not only learning that my child will have lifelong issues, but I am also in the middle of the postpartum period. Please be mindful of my tender emotional and physical state. If we are meeting years into this journey, do not assume that I have become accustomed to the fact that there is a DNR (do not resuscitate) form in the desk drawer in our living room, in the glove compartment of our van and in our daughter’s lengthy hospital chart. Please know that updating this form never gets easier. Speaking nonchalantly about our child’s life expectancy is insensitive, whether you intend it to be or not. It will always be a delicate topic for us. Knowing that we will likely outlive our daughter will never, ever be acceptable to us.

3. Meet me where I am. Please do not expect me to be where you are mentally or emotionally, for I am not there yet. I have not lived the sorrows and losses you have witnessed. I have not experienced even a fragment of what you anticipate for our future. I have only lived this life for a decade, and anything beyond this moment has yet to be lived. Use caution when sharing with us the medical outcomes of other families “like ours.”

4. Unless absolutely necessary, please refrain from asking me about my pregnancy and birth. Especially in the early days, months and years, having to explain how and where our daughter was born each time we enter an emergency room, hospital or medical clinic becomes redundant and is unnecessary, especially when our visit is to rule out an ear infection. It is emotionally invasive to make us relieve this intimate and personal experience with virtual strangers, simply in order to fulfill clinical checklists. Interestingly, by the time we have integrated this experience into that part of our brains that deals with difficult experiences, you will no longer have a need to ask.

Do these suggestions resonate with you as parents? Please add your own in the comments. Julie's book is available to be borrowed through Holland Bloorview's library.

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Grief? A friend? Don't miss this interview

I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here.

Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would Tell You, get ready to feel like Julie can see into your heart and understands when your courage for what some people call “extreme parenting” has run dry. 

As I flipped through the book, so many chapter titles resonated with me. Then I hit “Befriending Grief.” What? I’ve always resisted grief, pushed it down. The  thought of making it a friend that I welcome in for a cup of tea, as Julie suggests, was hard to imagine. Then I read the chapter and when I next felt grief I did what Julie said. And I realized that it did, indeed, change the dynamic, turning it into an act of great self-compassion. 

This is an excerpt from that chapter. Read the words carefully, and then when you feel the pain of grief, stay with it, as a friend would, follow these steps, and tell us what happens!

“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home. You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice that it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”

And later:

“Trust that the deeper you allow yourself to know your grief, the deeper the joy you will feel when grief's visits get further and further apart. There is no barricade large enough to keep grief out. Welcome it with open arms, serve it warm tea and sit with it without judgment, knowing that grief will come and then it will go, as long as you give it the attention it needs.”

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Want to know how dads feel? Watch this film

By Louise Kinross

It's not often you hear fathers of children with disabilities talk candidly about their child's diagnosis and how they reacted emotionally to it. But in Do It Differently, Scott Phillips sought out four dads with kids with autism and created an environment, maybe because it was dad-to-dad (Scott also has a child with autism), where they felt comfortable. The result is an exquisite, hour-long documentary where dads bare their souls. "We said 'why us,' as well as 'what did we do?'" recounts one of them. This is a must-see for every dad, and for every mom who felt their partner didn't 'get it' the way she did. You can watch it for free on YouTube or buy a DVD at Fan Blade Films. "For all fathers who feel lost, scared, and helpless I hope the film...inspires you to want to do more for your child who is different than you expected," says director Scott Phillips. "You are not alone."

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Dutch student heads home with new vision of advocacy

By Megan Jones

In February, 23-year-old occupational therapy student Anna-Lena Burdick arrived in Toronto from the Netherlands for a 14-week study placement at Holland Bloorview. While here she says her perspective on working with children with disabilities shifted dramatically. She learned about the concept of advocacy, and the role health professionals can take in being a voice for their clients. In the Netherlands the idea was one she’d never considered. There, she says, the concept isn’t widely embraced, and, in her experience, students aren’t taught how to become advocates for their clients.

Below, Anna-Lena, who grew up in Germany, shares her experiences and insights as a student working at Holland Bloorview and why she believes clinicians need to back their clients inside the clinic and out.

BLOOM: How long has your work focused on disability?

Anna-Lena Burdick: Not very long. I started to focus on disability when I began studying occupational therapy at university three years ago. Before that I wasn’t really exposed to people with disabilities. I’ve always liked working with kids. But Holland Bloorview was my first real exposure to kids with special needs.

BLOOM: You travelled far for this placement. What made you choose Canada?

Anna-Lena Burdick: Back in the Netherlands, the first couple of years of study are theoretical. You spend a lot of time learning about frameworks and different models of care. Many of the frameworks we learned about were developed in Canada, and a lot of our practice is based on what this country is doing already. You have a leading role, from my perspective. I wanted to see the best example of occupational therapy in practice. And plus, I also knew that Holland Bloorview was a leader in pediatrics and rehabilitation.

BLOOM: One thing you discovered here was the concept of clinicians acting as advocates for clients. How did that come about?

Anna-Lena Burdick: I was approached by my supervisor Darlene Hubley and she asked if I would be interested in working with her on a research project on the topic. She explained the concept of advocacy to me. It wasn’t something I had heard of before. It was totally new to me. Immediately I found it interesting and told her I would love to participate.

But when I first started I didn't know how to translate the word 'advocacy' into Dutch and German and it was difficult to communicate the idea of the project without using the English word.

I looked up 'advocacy' on Google Translate in Dutch. There are other words in Dutch that are similar, but not the same. The concept of advocacy never came up before in classes at my university. The term wasn’t mentioned, and neither was the idea of the role we might have ourselves.

Fully-trained clinicians in the Netherlands may understand the concept and know when they have to do it. But from a student’s perspective, I feel that we need some more guidelines. We need professionals to mentor us and tell us, “Here is a good example of a situation where we need to advocate. Here are the steps we can take to advocate for this client.”

BLOOM: Tell us a bit about the research work you’ve been doing.

Anna-Lena Burdick: We ran a series of interviews with a variety of people: students and clinicians, educators at the University of Toronto and one of the parents from the Family Resource Centre at Holland Bloorview. We were trying to figure out whether people were aware of their potential role as advocates, how professionals integrated advocacy into their work and whether students were aware of how to do it.

On a personal level, it was very interesting to see what each of their perspectives were, and to gain more of an understanding of what I should be taking on as a junior professional.

BLOOM: What did you take away from those interviews?

Anna-Lena Burdick: You can advocate on a micro level. For example, say the child you are working with needs special support at school. You could write a letter to the school’s administration explaining why it’s important the child get access to a particular program or therapy.

Or you can advocate at a higher level. You could try to influence the law. Even something as simple as noticing a building in your community that isn’t accessible for people with wheelchairs, and lobbying the government to make that space accessible. These may seem like small things but they can help others to achieve the fullest possible quality of life.

BLOOM: Why is it important for health workers to be advocates?

Anna-Lena Burdick: As occupational therapists, we take a holistic approach to patient care. We try to focus on the client and their individual goals. We build a pretty good idea of what the person needs, what their strengths and challenges are. But we also look at the environment they’re in. We try to see what barriers exist and how we can modify situations to help the client participate as fully as possible. We’re very aware of our clients’ everyday lives. We have such a comprehensive view of their needs and their goals. That makes us great candidates to advocate for them.

As a [clinician], you can also teach your clients to advocate for themselves. That can help them achieve more independence, which is a very important point, particularly from an occupational therapy perspective.

BLOOM:  What is the most important thing you’ve learned here?

Anna-Lena Burdick: The experience broadened my horizon a lot. I learned not always to focus on diagnosis. A diagnosis helps give an idea of the strengths and difficulties the child might have. But it has limits because each person is different. As a student it can be easy to get stuck on the diagnosis. But it’s very important to look at the child and their family as a whole, to focus on what that individual child’s strengths and [challenges] are, and on their particular goals and how to help achieve them.

I also love the idea of a family-centred focus. I think empowering families by making them a part of the team and a part of the child’s treatment is so important. I also realized that you always have to be aware that parents can have different goals than the child. And it’s important to listen to both. These two ideas were very new to me.

I’d like to go back to my university and encourage other people to think about advocacy and to become advocates themselves. I don't think many students know a lot about it. I want to try to inspire them with what I learned.

BLOOM:  How would you describe Holland Bloorview?

Anna-Lena Burdick: I think it’s just an amazing place. My supervisors were very focused on my learning goals. I feel as though they wanted my input and appreciated my perspective as a student. I also felt welcome as an international student. It seemed as though everyone wanted to get to know me and my story. It was a great feeling, and I’m very thankful for that opportunity.

Holland Bloorview has such a leadership role in children’s rehabilitation. I got the sense here of how important it was to help children reach the fullest quality of life.

Anna-Lena (bottom right) presenting her research work with Darlene Hubley, interprofessional education leader and Anna-Lena's placement supervisor.

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How to hear what the heart is saying

By Louise Kinross

Last year at an American conference on patient/clinician communication, Holland Bloorview family support specialist Lorraine Thomas participated in a simulation.

An actor playing the part of a patient was lying in a hospital bed in his robe. He had a number of scripts for clinical interactions and randomly picked people in Lorraine’s group—including doctors and nurses—to role play the part of the health professional.

“With me he started by saying ‘My mother had this disease and now I have it too,’” she recalls. “I said ‘I’m sorry to hear that’ and he came back immediately with ‘But it’s not fair. Why did it happen to me?’ He was there to push our buttons and take us out of our comfort zone. Then he said: “I saw my mother die of this disease and it was awful. I promised myself I would never let myself go this way. I looked after myself and had regular checkups and it still happened to me.’ Then he started sobbing.”

Lorraine says she was so concerned about appearing “professional” in the eyes of the clinicians watching, that she panicked. “When the actor started sobbing, it was a little too real. I got flustered, wondering whether I should hold his hand or pat him on the back. But I was aware that the other health workers might think that wasn’t professional. I said ‘I know it isn’t fair, but sometimes that’s how life is.’ The actor and the group groaned and said ‘You can’t say that.’”

Lorraine had “overthought it,” the group told her. “I needed to respond to the emotions behind the patient’s words. So it would have been better if I made a physical gesture—like patting his back or holding his hand silently. Or even saying “‘I'm so sorry, this is very hard for you.’   

“The actor said the way I responded made him feel like I wasn’t really listening to him. That I was glossing over things by making them abstract. He said ‘I don’t care about “that’s life.” This is happening to me, and this is personal.’”

At the conference Lorraine learned about “deep listening”—described as a whole body experience meaning “I give you my ears, my eyes, my undivided attention and my heart.”

Instead of jumping in to resolve or fix the client’s or parent’s problem, she says, “we need to look beyond the words at what is the emotion under it. We need to acknowledge that emotion, whether it’s sadness or anger or fear: ‘I understand that you’re afraid or very worried. I hear you.’”

Often clients and parents aren’t looking for an answer, or to be given a list of “action items” to resolve the problem. In many cases, they have problems that can’t be resolved in a logical way.

“The group felt I was trying so hard to be professional that I was holding back on my emotions and I didn’t trust my response. Sometimes briefly squeezing a person’s hand or a neutral touch on the back or shoulder can physically ground people. It’s a way of saying: ‘I’m here okay? I’m here and you’re here.’”

Lorraine says the most important thing in difficult clinical conversations “is to be present and in the moment. The person in front of you needs to be the only thing on your mind. Don’t start thinking ‘I’m going to make this observation’ or ‘I’m going to ask this question.’ Just be present in the moment.”

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I want a doll (or toy) like me

Here are some example of dolls and stuffies adapted to include stomach tubes, braces, wheelchairs and more. A number of you sent photos in. We couldn't include them all, but hopefully these will give you some ideas for your own dolls and toys.

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Four dads on raising kids with autism

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A sister asks 'Do you see me?'

By Cristina Breshears

Dear Mom and Dad:

Even though I was born into the chaotic aftermath of my big sister’s diagnosis, I wasn’t born understanding it. I saw how difficult things were for you: how hard you worked, how hard she worked. I saw the different people come to our house to help. I saw your tears and heard your prayers. But I couldn’t know what was wrong. I didn’t know what to expect or what I should do. It was my everyday normal, it was all I ever knew, but I didn’t know. 

I need you to help me ask the hard questions so I can better understand.

Although I could be scared of some of the things that happened in our house, I didn’t know I could come to you for comfort. Sometimes I was sad and sometimes I was angry. And sometimes I really didn’t know how I was feeling. You were so busy helping my sister and you were tired; and I saw how sad you were sometimes. I didn’t know that it would still be okay for me to come to you and tell you all that I was feeling. 

I need you to invite me to share.

Because I was the little sister, I didn’t know it was expected that I would someday surpass my big sister’s abilities in walking, in talking, and in school. It felt wrong when I could read the book to my big sister, and sometimes I thought I could see your sadness at those bittersweet milestones. I thought I reminded you of what might have been, and sometimes I felt guilty. I didn’t know it was okay and good for me to grow bigger and stronger and smarter. 

I need you to encourage me and celebrate my milestones and accomplishments.

Because my sister needed so much of your time and attention, it sometimes seemed that she was all anyone could see. I didn’t know that my efforts to stay quiet and still, to be good and not make trouble, would eventually lead to me feeling invisible sometimes. I didn’t want to take attention away from her. 

I didn’t know it was okay for me to be noticed. I need you to come find me.

Because your two hands were so often full of what needed to be done, I offered my own two small hands to help. It was a way I could be close to you. It was how I could be part of our family whose clock and calendar revolved around my sister. 

I need you to remind me that my efforts are appreciated but never expected and that your love for me is not contingent on my always being helpful.

Although standing up for my sister against bullies and discrimination was second nature to me, I didn’t know how to stand up for myself. I could hold her hand and help her hold her head up high, I could fight against injustices and lobby for change, and still feel too inconsequential to stand up for myself. 

I need you to show me we are all worth fighting for.

Although you and my sister taught me how to be compassionate and speak out for those who are marginalized, I didn’t know how to show myself that same compassion. 

I need you to help me understand that everyone deserves compassion, second chances, a hand-up, a shoulder, an ear, a hug—even me.

I was born three years after my sister’s brain damage. Her diagnosis and its effects were all I ever knew, but I didn’t know.

Love, me

Cristina lives in Portland, Oregon and encourages parents to check out the resources at The Sibling Support Project. 'All the feelings parents experience and share with their therapist, best friend, support group or spouse are also felt by their typical child. But many siblings have nowhere to go with all these feelings.' Sibshops are groups where games, new friends and discussion help siblings see that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. None of this support blames parents, Cristina says, and all of it can be life-affirming for a sibling.  

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A twin's bond sparks brilliance

By Louise Kinross

Judith Scott was an acclaimed sculptor whose abstract pieces—combining fibre and found objects like an umbrella or bicycle wheel—show in galleries and museums around the world.

Yet for more than 40 years, her talent lay dormant.

Judith, who died 10 years ago, had Down syndrome, was deaf and lived most of her life in an institution. Ironically she was deemed too “retarded” to draw with crayons while there. Judith’s life changed at age 42 when her twin sister Joyce brought her to San Francisco and became her guardian.

Joyce enrolled Judith in Creative Growth, a community arts centre for people with disabilities where Judith found her passion.

Joyce’s upcoming book EnTWINed: Secrets From The Silent World of Judith Scott will be published in 2016 by Beacon Press. For seven years the girls lived together in a rural setting on the outskirts of Cincinnati where they were inseparable. At age seven, Judith was sent to an institution three hours away.

BLOOM: What was your early childhood with Judith like?

Joyce Scott: It was idyllic in many ways. We had three older brothers who had their own lives and because we were twins, our parents made this giant sandbox for us where we’d be safe. We played together in this enclosure and had a lot of experiences with nature and the physical world. Behind us were sheep pastures. It was a beautiful place to be children. We slept together and as we got a little older we went around the neighbourhood and played with other children.

BLOOM: What kind of personality did Judith have?

Joyce Scott: She was very loving and outgoing and interested in everything. We didn’t know she was deaf, and what came to be seen as behaviour problems—not coming when someone called her or not being responsive—was related to her deafness. She was very involved in the physical world and now, knowing that she was deaf, I realize the world of tactile sensation and of our touch was a lot more important to her.

BLOOM: How did you communicate?

Joyce Scott: Through signals and touch and she had a few sounds. She understood signals that we developed naturally.

BLOOM: How was her disability explained to you?

Joyce Scott: I don’t remember it being explained. Our parents didn’t even know what Down syndrome was, or have a name for it. I don’t remember realizing she was different for quite a long time, until she started being excluded. I just thought she was Judy.

BLOOM: Why was Judith sent to an institution?

Joyce Scott: She was seen as being more difficult. She’d figured out how to go to the back door where the screen door was locked and get on a chair and climb up and unlock it. She’d wander away and we’d call her and she wouldn’t respond. We had a bad experience when Judy was maybe six where we were next door with a lot of children on the porch and a little one…fell off and her mother had this idea that Judy had pushed her, which was untrue. She said Judy couldn’t come over after that. Our mom carried Judy a lot and she developed back problems. Our parents met with a pastor and a doctor and were told ‘you need to put her in an institution.’ They were told it was bad for the other children for her to live at home.

BLOOM: What was it like when she left?

Joyce Scott: It was absolutely horrendous for her and for me. I woke up and we slept in the same bed and she wasn’t there. I went looking for her and my mother said she was going to a special school where she would learn to talk. At first I thought she was coming back and I thought maybe I could do something to help to bring her back.

BLOOM: Did you visit?

Joyce Scott: It was this horrendous state institution that was something out of Charles Dickens. Terrible. We went regularly for a while, and she came home the first summer, but then our father had a serious heart attack and he died a few years later and that sort of changed everything. Initially she was three hours away but when we were 10 she moved to another place that was four-and-a-half hours away. We would go, but not as frequently. Our mother had a nervous breakdown and was hospitalized. It was very hard on her. She had a lot of guilt and shame about sending her away.

BLOOM: How did Judith influence you?

Joyce Scott: I’ve worked almost my whole career with children with disabilities and families. I was a pediatric nurse and a parent/infant specialist and I did home visiting with parents of babies up to age three who had a disability or were at risk for having a disability. It was an incredibly satisfying and meaningful career for me. So much of what my life has been has been deeply influenced by Judy. When I first finished school at Ohio State I got a job teaching at the state institution where my sister had been sent.

BLOOM: How did you decide to bring Judith to live with you?

Joyce Scott: I moved to California when I was 25 and I would go back to Ohio once a year to see Judy. Later on I was working as a critical care nurse to a family of a baby with medical problems. I became close with the family and went to meditation retreats with the mother. One was a six-day silent retreat. I’ve always been very busy and it was the first time ever that I was quiet. Every day I went deeper inside. Around the fifth day I felt like I came to my heart, my centre. I had this feeling that I was there with Judy and that our core was a central core that we shared. It was like someone turning on the light in a dark room. It became clear to me: ‘What on earth is she doing in an institution 2,000 miles away when she could be with us?’

BLOOM: How did she adapt?
Joyce Scott: It was completely unbelievable. She walked in the door like she’d come home and she went into the kitchen. There were dirty dishes and she looked at me and laughed and washed up the dishes and then she took her wet hands and wiped them down my body and laughed. She was always doing little tricks. She had a bedroom and she came in and took things out of her suitcase and rolled them up and put them in her dresser and put her shoes under the chair. She was completely at home—like she’d been waiting for me to realize she was supposed to be there. I had two daughters at the time and the 10 year old became best friends with Judy. She lived with us for a while and then I found her a ‘board and care’ home nearby and she stayed there. We saw her every day and she’d come spend the weekend with us at our house in the country.

BLOOM: How did you find Creative Growth?
Joyce Scott: I was looking at different programs and really not liking them. Some had cubicles and people would sit in them separating nuts and bolts. They were doing stupid, meaningless activities and it was isolating. I have a good friend who’s a psychologist and she told me about Creative Growth so I called and went to visit and fell in love with the place.

BLOOM: Was this a public or private program?

Joyce Scott: It was provided through the Regional Center in California, an umbrella organization for people with disabilities, so it was paid for. It was a program from nine to three.

BLOOM: When did Judith first start to show potential?

Joyce Scott: For about two years they were introducing her to different materials. She didn’t like drawing, painting or ceramics. She would draw, but not even look at what she was drawing. Eventually they began to think ‘Maybe this isn’t the right place for her.’ One day Judy was sitting at a table where a visiting artist was working with textiles. Judy took some threads and yarns and found some sticks on her own and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded. After that they gave her free rein to go to a materials room and pick out what she wanted. Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.

BLOOM: What did her art mean to her?

Joyce Scott: Without language, she couldn’t communicate her thoughts. Tom, the director of Creative Growth, felt she was finding her own language and finding a way to give voice to her feelings and her deep self. The sculptures are her way of telling her stories and speaking her truth. When people are in the presence of them they often say they get this feeling of such intensity and spirit inside them. They feel they’re pulsing with this life force. The idea that her sculptures were her voice—and her language, her paragraphs and sentences—makes sense to me.

BLOOM: How did she feel about the recognition she got?

Joyce Scott: She was becoming well known in ‘outsider art’ and museum circles and people would come to see her. She would usually be quite gracious and shake their hand and then go back to work. It didn’t mean much to her. When she finished a piece she would rub her hands back and forth, as if to say ‘That’s it, it’s done, good job’ and then she would point to the staff person next to her and point upstairs to indicate that the person could take the piece away. Within five minutes she’d start on something else.

BLOOM: You mentioned she had a first show at Creative Growth?

Joyce Scott: Yes. With that first show they brought her into the room where her pieces were on exhibit. These were pieces she hadn’t seen for months or years. The staff was hiding in the alcove, waiting to see how she would respond. She went to each sculpture and either patted it or blew it a kiss or waved to it. There wasn’t a dry eye. It was like she was greeting her long-lost children.

BLOOM: Her talent could have easily remained hidden.
Joyce Scott: I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ can and often do have great giftedness and great potential. I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.

BLOOM: What advice would you give parents on how to best support siblings of kids with disabilities?

Joyce Scott: Often the focus is on the child with disability and the sibling assumes a caretaking role that is more dominant than is healthy for their own self-development. I think it’s important to encourage brothers and sisters (and mothers!) to stay in touch with their own wishes and dreams. I think it’s important for parents to have special time to really honour the other child.

BLOOM: How did Judith die?

Joyce Scott: She was just about to turn 62. We had gone out to dinner and she seemed to have a stomach ache. She hated hospitals and would become hysterical if I took her to one, so I called my ex-husband, who’s a doctor, to ask what he thought. He felt certain it was just a stomach ache. So we went home and I was lying in bed with her and talking to her and she suddenly stopped breathing. In some ways it was such a gift that she died in my arms. But there’s another part of me that thinks maybe if I’d taken her to the hospital, things would have been different. However, when she was born she was given a life expectancy of 13 years and she’d lived a half century beyond that. So I need to focus on being grateful that she was with us as long as she was.

Learn more about the twins at Joyce Scott's website. The photo immediately below is of Judith's exhibit at the Brooklyn Museum earlier this year. Photo by Ruth Fremson, The New York Times/Redux.

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