I am Nat's ghostwriter

This piece by Susan Senator (centre), author of Making Peace With Autism and the Autism Mom's Survival Guide (for Dad's too!) touched me. Susan always writes with great honesty and insight about raising her son Nat (left). Here she writes about her role in speaking for Nat, who has autism and limited speech. The truth of this line hit me: “I notice how the norm for most people in our family is to ignore Nat.” Susan describes how a child's inability to communicate will leave him isolated, even within the family, as an adult. And it's not because siblings and other family members are mean! I don't think parents of younger kids foresee this. I didn't. Much food for thought. Thanks Susan! Louise

By Susan Senator

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be. I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them. It feels like it is crossing a line to do that. Don Meyer, director of the Sibling Support Project, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary. It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.

Susan Senator is the mother of three sons, the oldest of whom has autism. She is an author and disability advocate and her published work can be found at http://susansenator.com.

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This looks mesmerizing

Trailer for Stand Clear of the Closing Doors.

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Happy holidays!

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Wanted: friends

By Nathalie Wendling

I think having friends is the most important thing in life. No matter how bad my day is going, having a friend around seems to make it better.

Finding friends for my 14-year-old daughter Melanie (above right), who has Cornelia de Lange syndrome, has been an endless, exhausting and sometimes devastating, struggle.

In nursery school, the whole class was invited to a birthday party—except Melanie! In Grade 2, Melanie was invited to a party, but bullied when she got there. Girls took turns pulling down her pants and laughing. There were so many difficult moments and painful realities that I didn’t want to see.

In elementary school I figured out one-on-one play dates didn’t make sense. Melanie couldn’t communicate properly and had no idea how to socialize. So I'd invite a bunch of girls over at the same time. Over the years, these girls learned how to communicate with Melanie, understand her differences and even help with some issues like toileting. The girls were comfortable with all of it. They loved Melanie and loved coming over as a group. The hardest part was accepting that Melanie could never bond with the girls as well as they’d bond with each other.

By Grade 5, our local school couldn’t meet Melanie's needs. So we placed her in a special program 45 minutes away. The program was designed for children with special needs. We were excited and curious to see if Melanie would bond with other children with disabilities. 

Within two years, Melanie made a friend at this school. But she lived far away. We tried a few play dates but the distance to get together was absurd. We'd drive three hours for a two-hour play date. Melanie would cry. She wanted to see more of her friend. The two girls were very comfortable with each other. They'd spend hours on the phone, which was amazing because Melanie can’t really talk.  

Melanie seemed more at ease and confident in her new classroom as well, which was a program for 10 children with special needs (as opposed to the full integration with an assistant she’d had in our local school).  

Then, in Grade 8, Melanie had numerous health problems. She was absent from school for almost six months. It was awful, lonely and depressing. No phone calls, no visits, no cards and no friends nearby. Her new friend lived too far away. Melanie was alone all the time. She seemed depressed for the first time in her life. It was heartbreaking. 

“This is not a life,” I said to my husband and son Tommy. “Something has to change. Friends are so important. We need to figure something out. We need to find friends! We live in a small neighbourhood. Where is everyone? Everybody deserves at least one good friend!”

So we discussed some options. We decided:
-Melanie needs to attend a school with a special-needs program with some integration that is much closer to home (one exists in our neighbourhood for Grade 9) 
-Melanie needs to find friends, maybe peers with special needs, close by.
-Melanie needs to get out of the house to an activity in our neighborhood—not downtown where most of the activities are offered
-As a family, we need to find a common activity that isn’t TV! We can't ski, skate or go swimming together, so what else can we do? 
-As a community, we need something for everyone: children with and without disabilities, teens, adults and seniors. We need inclusiveness and integration. Melanie enjoys being around people of all ages. 

After months of thinking and intense discussions, we had a plan.

Last spring we started a hand drum circle in our basement with two other families—moms, dads and siblings. We found a teacher and bought some hand drums.

After six months, we moved the drum circle to the Legion in our neighbourhood. And the circle keeps growing. By February, more than 50 people will join: old, young, teenagers, those with and without special needs. Everyone in our community is invited.

The drum circles are a blast of energy and super social! We never imagined they would be this fun! Melanie and her brother Tommy have made new friends. My husband and I have made new friends (we needed some too!).

Melanie was able to reconnect with her elementary school friends from the community. Last week, we invited the group of girls who used to come to our house when Melanie was younger to the drum circle. Melanie was ecstatic to see them!

Melanie also gets to make new friends. One is Rob, who is 31 and has cerebral palsy (above centre). He attends the drum circles on a regular basis. He also comes over to our house for dinner and watches Tommy (above left) play hockey at the arena.

Melanie, Tommy and Rob have become good friends. They laugh so hard together that they can’t breathe! And that makes them laugh even harder.

Nathalie Wendling is happy to answer questions about her drum circle at nats.wendling@gmail.com. You can follow the family at 2 Pet Rats, the website they created when Nathalie and her son Tommy wrote Melanie and Tommy Have Two Pet Rats and One Syndrome.

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For some parents, the 'empty nest' is a fiction

By Ijeoma Ross

Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.

Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for offspring is evaporating.

While there are different concerns about leaving teenagers unattended, this is the first step toward the joys and adjustments of an empty nest, when, after years of dedicating time and energy to their children, couples are free to do what they want. They can eat out, travel and generally rearrange their schedules at will.

It sounds nice.

For parents with severely disabled children, it also sounds like fiction.

Despite his age, we cannot leave our son Deane alone and I can’t imagine a time when that would be possible.

His younger sister, who understands Deane’s needs completely, can look after him for a brief period of TV watching, but cannot lift or reposition him. We also feel strongly that she has her own life to live.

It’s not that we are without a social life. Our friends are very accommodating about doing spontaneous dinners and events at our house. They are also more than willing to put their backs into lifting Deane’s wheelchair into inaccessible houses. But now that they are increasingly free to enjoy short-notice activities and meals without kids, we just can’t adapt to that kind of schedule.

In the short-term, a full-time nanny or a robust roster of capable babysitters could provide some flexibility. But, with the exception of a couple of families who have had nannies since their children were young, I know few who have managed to make either arrangement work.

As children get older, bigger and heavier, many nannies cannot do the lifting, repositioning and other physical care. Babysitters grow up, move on to real jobs and to real lives.

I have spent much time working on a solution for our immediate needs. Finding someone reliable usually buys me a few months, but then something comes up and I am forced to start again.

The long-term issue is so depressing that I have ignored it—although I recognize that is no longer a responsible option.

So, as I listen to our friends and acquaintances talk about their increasingly free lives, I get that isolated feeling I used to get when parents talked about their children learning to walk, talk and pass other milestones. It’s another reminder that no matter how much we try, we live a very different reality.

Ijeoma Ross is a freelance writer in Toronto who blogs at Disabled Families.

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Former client helps youth gain independence

By Louise Kinross

Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working in children’s rehab.

BLOOM: What are your memories of Holland Bloorview as a child?

Gabriella Carafa: I always enjoyed coming here because it was such a welcoming place, even though the clinics were long and we’d sometimes spend the entire day (or what felt like the entire day for a child!). I didn’t come here often—once a year for my clinic appointment. I also went to the dentist here and had my orthotics made here.

BLOOM: What was the greatest challenge for you growing up with a disability and using a wheelchair?

Gabriella Carafa: There weren’t any challenges until I became a teenager. Then I started to realize my life will look different from my friends, who don’t have disabilities. They’re going to backpack around Europe and if I need to do that I have to bring someone with me—like my mom or an attendant. At that point I didn’t know how to manage being away from home for more than one night. I needed to learn skills to live independently and that’s why I went to The Independence Program (TIP) at Holland Bloorview.

BLOOM: What was the most important thing you got out TIP?

Gabriella Carafa: I learned that independence doesn’t mean doing everything for yourself. It means making decisions for yourself. So I could have an attendant come and help me with my morning routine so that it didn’t take three hours, but only one hour.

A lot of youth feel they have to do everything themselves and that if they don’t do it themselves, it doesn’t count. Once you go to college or university or are working or volunteering, you’re not going to want to spend three hours getting ready in the morning. At TIP they said: ‘Yes, you can do this now, but when you have a job and kids and are married, what time are you planning on waking up?’

BLOOM: What other things did you learn there?

Gabriella Carafa: I realized how much stuff I didn’t know. I was 18 and I didn’t know how to make a grilled-cheese sandwich. At home I was like ‘Okay, I want grilled cheese’ and my mom would make it. At TIP they said ‘Okay, so how do you make grilled cheese?’ It was a lot of practical things. The bigger thing was realizing I could still reach all my goals. My life would look different, but everyone’s life looks different. No one has exactly the same life as anyone else. I’ve still managed to accomplish great things.

BLOOM: How did you decide to become a social worker?

Gabriella Carafa: I chose social work because I wanted to be able to work one-on-one with clients and families, but also to tackle larger macro policy issues through advocacy. I’ve always wanted to work with individuals with disabilities and working here was great because it’s my way of giving back to the organization. Not only am I a social worker, I’m someone with a disability and someone who got services here. I feel I have a different understanding.

BLOOM: How does your firsthand experience aid you?

Gabriella Carafa: In social work we have something called ‘use of self’ where the therapist can bring parts of themselves into the equation. So if you have a good therapeutic ‘use of self’ you know when to share things, when it will help build a stronger therapeutic relationship, and when not to, so you don’t make it about you. People tend to feel like they can ask me questions.

BLOOM: What do you do in the LIFEspan clinic?

Gabriella Carafa: I see clients and their parents, often together. They’re coping emotionally with the transition to adult services. Most of the families feel like Holland Bloorview is their home and a lot of services are centralized here, or at SickKids, as opposed to in the adult system where services are scattered at different hospitals. Some of my work involves equipping clients and families with advocacy skills to navigate the adult system.

A lot of it is about funding, about connecting with the Ontario Disability Support Program or Developmental Services Ontario. They want to know what’s possible with housing options, relationships, sexuality.

I strongly encourage clients to go to our life-skills programs because I find youth often don’t know what they don’t know. Our life-skills programs can help them see what their strengths are and what they need support with as well as what their life may look like in the future.

BLOOM: Who do you work with?

Gabriella Carafa: I work with a youth facilitator, a life-skills facilitator and a nurse practitioner. We all work together as a team.

BLOOM: What’s the most challenging part of your job?

Gabriella Carafa: That I can’t change everything and increase the resources out there. In general I find that services are lacking and I wish there was more I could say or do. It’s hard when families say: ‘It’s not enough, what are we going to do?’ They’ll say ‘How does anyone live on the money you get from the Ontario Disability Support Program?’

I find families and clients want to be heard, they want to feel listened to. I focus on client and family strengths. Families are incredibly resilient. It’s not about empowering families—they already have it inside them. They just have to figure out how to use the skills they already have. They’re already powerful.

BLOOM: What do you like best about your job?

Gabriella Carafa: Being able to see a client and family at their first appointment and then over the next three years watch them become more comfortable with transitioning and building their skills. Sometimes clients will start coming in with their parents and then later they come in alone and if they’re able to do that, that’s what we want. In adult services they need to be able to manage appointments and problem-solve. I’m part of that journey with them.

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BLOOM media roundup

Happy Monday!

Looking for a read that will make you think? Check out the disability and parenting stories we've collected recently. Let us know if we missed a good one! Louise

Forget what you know about disability Channel 4 video

Singer Viktoria Modesta is part of British Channel 4's Born Risky campaign, aimed at challenging viewer stereotypes. She wears 'artistic' prosthetic limbs made at The Alternative Limb Project.

This amazing father created his own school for his injured daughter Viral Nova

When his newborn suffers a severe brain injury after being shaken by a nurse, this father opens a school in New York for kids with brain injuries.

Silence wrapped in eloquent cocoons The New York Times

After spending 35 years in an institution, Judith Scott, who had Down syndrome, was rescued by her twin sister and went on to become a world-famous fibre artist whose work is showing in the Brooklyn Museum.

A teenager with big dreams CTV video

A boy with a rare disease that leaves his skin as vulnerable as a butterfly's wings and in constant pain raises $80,000 to grant wishes for others with his condition. 

And the beat goes on Cincinnati Children's Hospital blog

A music therapist records the heartbeats of dying kids and incorporates them into songs that parents can keep.

The day some of my son's class snubbed his birthday Chicago Tribune

'When my son with autism turned six, only one kid from his class came to his party.'

My son is black. With autism. And I'm scared of what the police will do to him
Medium

'Yes, less than an hour after hearing my son has autism, I took into consideration what it means when he interacts with a cop.'

How to hear voices that are seldom heard Video

Researcher Sara Ryan speaks at the Transforming Patient and Staff Experience Conference at Oxford University in November. Her son Connor, who had autism and an intellectual disability, drowned in a bath unsupervised after having a seizure in a special unit in a British hospital.

North Korea's disappeared: Regime 'performs experiments on disabled people before leaving them to die' The Telegraph

North Korea is 'cleansing' its population by leaving disabled infants to die and sending people with disabilities to a remote village or using them for medical experiments, a defector says.

Why is Reginald Latson being denied the support he needs? 
The Washington Post

A police officer questioned a youth with autism who was sitting outside a library, waiting for it to open. A scuffle ensued. The young man was convicted of assaulting a police officer and is languishing in solitary confinement.

Oversold prenatal tests leading to abortions Boston Globe

Companies are overselling the accuracy of a new generation of prenatal tests and doing little to educate expecting parents or doctors about the significant risks of false alarms.

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'You get the one you're supposed to'

By Kari Wagner-Peck

When my husband Ward and I started dating I was 42 years old and he was 29. Yeah, I have a trophy husband.

We eventually wanted a child. We briefly explored fertility counselling, but after I cancelled our introductory appointment with the clinic—twice—I had to explain to Ward that I didn’t want to be pregnant. A biological child wasn’t important to me. Understandably, it took a while for my husband to come to terms with the fact that adoption would be our path to a child.

We couldn’t afford to adopt internationally so we decided to go the route of state adoption. It was simple really: we wanted a kid and the state had free ones through their foster-care program. We attended their classes and entered into the Byzantine world of state adoption.

What followed was months of excruciatingly close calls and near misses: we kept hearing about children who might be available for adoption—but turned out not to be.

Almost nine months to the day our adoption classes ended we stood next to each other in our dining room listening to a voicemail from Cathy, our foster-care worker. It went something like this:

“Hi guys! I met someone today who may be a match for you. He is a beautiful boy who is two years old and (pause) he has Down syndrome. Let me know what you think.”

What? Hadn’t we made it clear the biggest disability we were capable of handling was a child who was left-handed or colour-blind? We were first-time parents and we weren’t sure of our skill set (of course you don’t need a skill set, you just need to love your child, but we didn’t know that then!).

“Did she say Down syndrome?” I asked Ward.

“We better listen to that message again,” he said.

We played it six or seven times, until we were absolutely convinced she had said Down syndrome.

“I don’t know why, but that doesn’t bother me,” said Ward.

“Me neither,” I said.

We were silent for a few minutes.

“Do you feel calm?” I asked. “Because I feel strangely calm.”

“I do, too” he said. “Everyone has something. We just know what his something is.”

He was right. Everyone in foster care—and really in life—has something that makes them more vulnerable.

We talked a little more and realized there must be a reason we both felt this sense of calm. It wasn’t logical. It wasn’t planned. Something had happened that made us calm.

We decided to trust it. That was the extent to which we considered Down syndrome at that moment.

I called Cathy back and told her we were interested.

Then I started researching online. Googling ‘Down syndrome and adoption’ brought up mostly Christian adoption websites. Many people who choose to adopt an infant or child with Down syndrome do so as a part of their religious practice. That wasn’t us.

I was shocked by one fact I learned in my search: upwards of 90 per cent of women who discover they’re pregnant with a fetus that tests positive for Down syndrome abort. I had no moral judgment about their decision. I did, however, find it interesting that we were considering an option most people would reject.

I called a couple of friends who I remembered talking about families they knew with a child with Down syndrome. Without exception, the first thing anyone talked about was grief. These stories were essentially the same: they were about parents not getting the child they had planned on—the one without Down syndrome.

I spoke to a woman who had a teenage son with Down syndrome. She was shocked we would consider this: “I love our son,” she said, “but I wouldn’t seek it out.” She added: “I wonder if you will end up grieving who he could have been, too?”

“What about who he is?” I wanted to say.

I’d known about our kid—as I’d started to think about him—for only a few weeks then, so I was surprised that what she said made me angry. I was already feeling protective.

When we shared the news of our adoption with friends and family we found out what people really think about kids with Down syndrome. No one said “Hey, awesome you found a kid!” Instead, we heard “Why do you want to do that to yourself?” or “That sounds hard” or “Don’t do that, please.”

These reactions got to me and I started questioning things. I shared my concerns with my husband. He wasn’t moved by any of it. But I just couldn’t stop. Every few days I had some new tidbit of negative information about what to expect when you’re adopting a child with Down syndrome.

The last straw was when I told Ward that I’d talked to a woman who said she and her husband still changed their son’s diapers—at age 13.

“So, do you think you could change a 13-year-old’s diaper?” I asked, baiting him. “I mean, really, could you?”

“If it was just any 13-year-old boy, no,” he said. “But, if it was our son, I could.”

That was the heart of the matter. This boy wasn’t just any boy. This boy would be our son.

“Hearing all of these doubters and reading the information is frightening,” I said.

“So stop listening to it, kid,” Ward replied.

And that’s exactly what I did. I stopped my online searching. I stopped listening to other people’s fears, anxieties and doubts. Instead, I began to wonder about the emotional life of my son, who I hadn’t yet met. Children in foster care don’t get there by having stellar families. I thought a lot about how we might help our son overcome his own feelings of anxiety and fear and loss.

A social worker who was a 20-year veteran of state adoptions told us early on in the process: "You get the one you’re supposed to."

She couldn't have been more right.

This post is a compilation of pieces originally published on Kari Wagner-Peck’s blog A typical son. She’s now homeschooling her son Thorin (in photo above centre, with Mom and Dad), who became part of the family at age two and is now eight. Kari has a master's degree in social work and is a freelance writer and development consultant. She and her family live in Portland, Maine.

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Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday: Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see Deliberate termination of life of newborns with spina bifida, a critical reappraisal). 

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.

“The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

“What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s naïve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. “We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even years...to know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.

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'You go to places you never thought you could'

By Louise Kinross

Life with children with disabilities and chronic health problems is complicated. It can be traumatic and a source of heartache.

But it can also be life-changing in a positive way, says Laura Kerr Meffen, mom to Emily, 16, who has a rare metabolic disorder and multiple disabilities.

“With Emily it was kind of a tragedy and a grief, but I’ve had so many positives with having her in my life,” Laura says. “Sometimes you feel guilty that you’re using your child’s disability or a trauma to have positive experiences. Or people think you should be grieving and sometimes you aren’t.”

She better understood her experience after attending a workshop last month at the 2014 conference of the Ontario Association of Children’s Rehabilitation Services.

“They talked about something called posttraumatic growth and it validated the feelings that I had and gave them a name and a positive spin,” Laura says.

Posttraumatic growth in parents and pediatric patients is a review of 26 journal papers on positive psychological change that results in parents or children after a child's traumatic medical event (including cancer, prematurity and acquired and congenital disability).

“Posttraumatic growth is the positive psychological change that results from a struggle through a life-altering experience,” write the authors of the Journal of Palliative Medicine study. It may include “greater appreciation of life, improved relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image.”

The authors conclude that posttraumatic growth is an important, little studied and poorly understood phenomenon affecting children with serious pediatric illness and their families. They suggest research is needed on how professionals can positively intervene “to facilitate families' movement away from dysfunction or deterioration and toward growth.”

Laura says the concept of posttraumatic growth helps to explain her experience parenting Emily.

“I guess the biggest positive is that I’ve changed my life to recognize the small things, the little things that other people take for granted. I know now that life is not about money or career. It’s about doing things that make me and my family happy. It’s about being with friends and family who make you feel good and surrounding yourself with those people.”

Laura says that her decision to leave work to care for Emily full-time was initially hard, “but then I made myself a life as a professional special-needs mom. I think it’s okay to have positive feelings about that and to feel like my child is unique and special, and so am I.”

Laura says she’s grown in ways she never would have without Emily. “You become an advocate, and you go to places you never thought you could, meeting people you never would have otherwise.”

An example is her participation last year in the Easter Seals Drop Zone fundraiser where she rappelled down an 18-storey office building (see photo above of Emily and Laura dressed as a “Super Mom Hero”).

Laura advocates for and develops recreation programs for people with disabilities by sitting on a Markham Parks & Recreation committee and on the Markham Sports & Recreation Accessibility Committee.

She’s also played a key role in fundraising and writing grants to support the first universally accessible schoolyard in Markham at James Robinson Public School. This is a community school her children attended. “The playground will be accessible to all,” Laura says. "It will have an accessible outdoor classroom, an accessible stage, sensory and community gardens, loose play with pine cones, rocks and pots and pans, and play equipment that is connected by a paved serpentine trail with ‘calming bumps’ for wheelchair users,” Laura says. The group has raised over $100,000 to date for the project and needs another $100,000 to cover the play equipment, Laura says.

She hopes the study of posttraumatic growth helps parents understand that all of their emotions raising children with disabilities are valid. “It’s okay to have positive feelings and it’s also okay to grieve. I’ve grown, and it’s important for parents to know that we can be empowered and have positive outcomes raising our children.”

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Finding your voice

Anna Rendell presented a workshop called Me to We on the power of parents finding their voice on social media at the Ontario Association of Children’s Rehabilitative Services conference last month. She presented with parents Anchel Krishna and Darren Connolly. Below she shares how she benefited from using social media when her twins Drew and Dean, 6, were diagnosed with cerebral palsy. Anna and family are pictured above at Great Wolf Lodge.

By Anna Rendell

To get anywhere, we need to know who we are. We need a level of honesty and openness to discuss our emotions. We also need to be aware of our comfort levels, of what we want to share and what we want to keep private. When raising children with disabilities, we need to figure out our story. Social media can be a great place to do this.

When my boys were young, I was obsessed with seeking out families like mine. I hoped that connecting online with other parents would enable me to become comfortable with my “new norm,” with the normal that nobody wants and no one tells you about.

I wanted to know how people coped with their child’s diagnosis of cerebral palsy; how many parents had twins with CP, like me; how they supported their typical children; and what the future looked like for my kids.

My boys don’t have the same issues as some other children with CP, so I also wanted to connect with parents who could relate to having children who are non-verbal and have developmental disability. I think I wanted to protect what I cherished in my boys, what was normal to me, but wasn’t normal to everyone around me.

After a while I found myself overwhelmed with the Facebook groups and Twitter feeds I followed. A lot of the content was negative, and I have always lived my life positively. So I learned how to delete the feeds that were less than positive, and choose only groups that were well organized, respectful, and like-minded.

I had so much to say that I started to write a blog. I needed a place to vent, to think, to process what I was going through. I wanted to voice moments with my boys, both positive and negative. I didn’t care whether I had a large readership.

Over time, I began to see that this little blog could make small changes in how my friends and acquaintances thought. I saw that my words had power and my perspective could influence the way others looked at things. Telling my story was no longer just about me. My story could generate broader understanding in the community.

Here’s an example.

When my boys started junior kindergarten they took a cab because they weren’t walking.

I made it our annual goal to have them ready to climb on and off the bus for senior kindergarten, so that they could ride with their older sister. We incorporated physio, occupational and speech therapy into this goal and they achieved it. But it takes them longer than usual to get on the bus.

We live on a main street, which means that dozens and dozens of cars wait behind the bus while my boys get on every morning.

I posted on my blog about how every day I wave to the cars lined up, hoping that someone will interpret the gesture as a sign of gratitude for their patience. I said I wish I had a sign that I could hold that said: “If you only knew how hard we have worked for this, you would smile.”

My goal was to lighten people’s moods if they were feeling angry or frustrated about the delay.

After running this piece, I received kind messages from a handful of friends and acquaintances. They let me know they were talking about my post and now they understood why it took my family longer to get on the bus.

Recently, a friend wrote to say she was in a rush one day and started to get frustrated sitting behind the bus. Then she saw me wave and realized who we were. She remembered my piece. She cried all the way to work, knowing how hard my family worked to achieve this goal and that each step up was a great accomplishment for us.

In the early days, sharing our stories on social media helps us as parents understand who we are, and what kind of support we need. But soon, we move from that place of “me” to one of “we.” We begin to foster understanding in our friends and families and in the larger community.

Follow Anna @annakrendell and at Sometimes you have to dance in the rain. I love her recent post titled Spinning bawl of grief.

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A mother's dream for inclusive, arts-based housing takes shape

By Louise Kinross

A community garden and farmer’s market, arts programs, yoga and a café are part of a Toronto housing community Skye Gross (above left) envisions will bring adults with disabilities and artists together to live and work.

“This is a radical departure from anything we’ve seen before,” says Skye, whose daughter Rachael, 18, has complex medical and developmental needs. “The current housing, recreation and job opportunities for people like my daughter are minimal, expensive, isolating and stigmatizing. I don’t want that for her, so I decided to build something better.”

Skye joined with Jan MacKie (right) and Karin Farkashidy (centre) to create the non-profit Triluma Living Collaborative, which aims to develop this new model of housing. The three women have a long history as leaders in Holland Bloorview’s Spiral Garden and Centre for the Arts.

“We’re looking to create a holistic community that will be completely inclusive, not just of people with developmental challenges, but of artists, wellness practitioners, families and community organizers,” Skye says.

The project will incorporate housing as well as commercial ventures that draw the public in.

Triluma is a response to the current housing crisis for adults with developmental disabilities in Ontario.

Earlier this year, a report from the Select Committee on Developmental Services said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. The report also noted that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.

Since then, the Ontario Ministry of Community and Social Services has partnered with MaRS—the medical research and social innovation hub in Toronto—to develop and test new housing models.

In April, MaRS issued a Challenge Brief with this question: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”

Skye hopes Triluma will be chosen as a MaRS incubator project to receive pilot money.

“No matter how lovely I make our beautiful, accessible home, eventually I’m not going to be here anymore and I don’t want my daughter being thrust into a strange environment with people she doesn’t know,” Skye says. “People want affordability, an end to isolation, and this notion of meaningful livelihood—as opposed to killing time watching TV. Our model addresses those elements.”

Skye hopes that a Triluma community will be operational in five years. “To start with we’ll need government support, but we won’t rely on ongoing government funding. Our financial model will allow residents to pay a reasonable rent in exchange for contributing their time to building and sustaining the community.”

That could mean growing food in the garden and selling it at a weekly market, or working in the café or in an arts program.

To launch their inclusive community building model, Triluma is offering Welcoming Back the Light workshops on Sunday Dec. 7 and 14 from 2-4:30 p.m. at Evergreen Brick Works.

Bring your kids and learn how to build lanterns and work with light and shadows in preparation for a Winter Solstice celebration on Dec. 21 at 5:30 p.m. All are welcome!

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After the fall

By Louise Kinross

Today is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin’s close-knit family, which includes four brothers, one of whom has Down syndrome, and the gruelling rehab that follows.

BLOOM: What is it like to have two children with disabilities?

Pia Pearce: What’s even more interesting is that in addition to David having Down syndrome and Kevin having a brain injury, my husband Simon and sons Andrew and Adam have dyslexia, so my whole adult life has been about special education. I have a doctorate in education. So it’s interesting how life turns out and we all get what we need.

BLOOM: How did having children with disabilities influence the way you responded to Kevin’s injury?

Pia Pearce: I think it was incredibly helpful to me. I had learned, over the course of time, a lot about patience and acceptance and a lot about understanding differences.

Even though David, who has Down syndrome, didn’t have major health challenges, we started early intervention with him when he was only three months old. I feel I was very fortunate in many ways with my background in education and experience with the medical field.

I had learned that you can take things that can be challenging and difficult and see a silver lining and a positive side to them. For example, my husband, who didn’t do well at school, was a huge success at home and his family celebrated all the things he was good at.

BLOOM: What kind of prognosis was Kevin given early on?

Pia Pearce: We were never given definitive information because all brain injuries are different and everyone’s rate of recovery and ability for recovery is vastly different. When we were at the rehab hospital there was a floor for patients with spinal-cord injury and a floor for those with brain injury. It was surprising to learn that everyone with a spinal-cord injury seemed to have a very similar recovery process but with brain injury there was a huge variation.

BLOOM: How long was Kevin in hospital?

Pia Pearce: He was in intensive-care for 28 days and a step-down unit for six days at the University of Utah and then he was in the Craig Rehabilitation Hospital in Denver for three months.

BLOOM: How did Kevin end up in Denver when you live in Vermont?

Pia Pearce: When Kevin was in intensive care, a good friend of ours said he’d help by doing research on rehab hospitals. He spent a lot of time on the Internet and making phone calls to other parents whose children had been in rehab. He determined that Craig Hospital would be best and then my husband and son Adam and our friend went to visit Craig Hospital and made the decision.

BLOOM: How were you able to pack up and move to Denver?

Pia Pearce: I was very lucky. It’s amazing how things fall into place and friends step up when you need them. One of my closest friends from my first year in college lives in Denver and she had a friend who had a house available. The house was on the market and they said that until it was sold, they were more than happy for us to stay there. It wasn’t far from Craig Hospital. So Simon and I moved there and our son Adam decided to take a year off from his job to be with Kevin every day in therapy.

BLOOM: The bond between Adam and Kevin really came out in the film.

Pia Pearce: They were very, very close before the accident and Adam knew exactly what would motivate Kevin. Because of the lack of insight that comes with brain injury, when Kevin came out of intensive care he thought he was way better. He wanted to go home. Adam was with him all day, every day, in therapy and was able to bring humour to the situation and make it bearable.

BLOOM: As a parent, what was most challenging?

Pia Pearce: We’re coming up on five years and Kevin is still working on his recovery. Kevin has always been very particular about the therapists he worked with. He either really liked them or he didn’t. One of the hardest parts was finding the right therapist that was best matched for Kevin.

Kevin’s had a terrible time with double vision and trying to find people to help him with his vision has been a major struggle. He’s hugely excited right now because he’s finally working with a doctor in Atlanta, Georgia who specializes in brain injury and has helped enormously.

I feel really fortunate that Kevin has been so motivated about his recovery. He was born a very determined little boy. He came out into the world with perseverance, determination and wanting to work hard and that’s why he got so good at his sport. He then took those gifts and talents and applied them to his rehab. I think the hardest thing for parents would be having a child who doesn’t feel motivated and who gets discouraged easily—and the amount of extra support that child would need.

BLOOM: What helped you keep a positive mindset?

Pia Pearce: I can’t say enough about family support and the hospitals we were in valuing that part of the process and including our whole family. I didn’t have any experiences of places where we as a family were pushed aside and that would have been incredibly difficult.

I was able to support Kevin because I was getting support from my family.

I think family support, in all different ways, is critical. I learned early on that it was better if fewer people were with Kevin, because he got easily overwhelmed. I come from a big family and I had to ask them not to come and tell them they were supporting me by not coming. Some of our family was front and centre, taking shifts with Kevin and rotating. To other people I said ‘This is a marathon, not a sprint, and we’ll need you later.’

BLOOM: Families here say they often receive tremendous support initially but then people go back to their own lives.

Pia Pearce: It’s hard for others to sustain that kind of support when it’s not something like a broken leg that gets better in six weeks. For other people, your situation falls off their radar. The same is true for the friends of the young person. Kevin was very fortunate to have very good friends. But I’ve talked to other parents who were desperately unhappy that the friends of their son or daughter were leading their child astray, minimizing their injury and saying things like ‘You’re okay. You can come for a drink.’

BLOOM: Some parents say they have to mourn the loss of the child they once had to accept their child after brain injury.

Pia Pearce: I have to be totally honest and say that wasn’t a big issue for me. I didn’t see any value in going there. Or maybe it’s what we talked about earlier—that because I’ve had so much experience with accepting differences, my focus is on acceptance. We’ve worked forever with our son David, who has Down syndrome, on accepting who he is.

I’m a firm believer in the importance of feeling your feelings and feeling the grief. I’m not about denial.

However, there was a lot about Kevin’s extreme snowboarding that was nerve-wracking for me. So I thought at least I don’t have to go to those events and stand at the bottom of those mountains freezing cold and full of anxiety. What he was doing snowboarding was very hard for me.

The other big thing was that even though he had setbacks, overall he kept getting better.

BLOOM: Some people with brain injury have a change in their personality. Was this the case with Kevin?

Pia Pearce: Some of Kevin’s friends would say he’s quite different now. But I just experience who he is now and in some ways he’s more open and communicative than he was before and more aware of how blessed he is and how important it is to live in the moment.

I understand the sense that the person isn’t exactly the same, and some people with brain injury change more than others. It’s good to acknowledge one’s feelings about who the child was in the past, but getting stuck on them isn’t very helpful.

My present moment is so full and busy I don’t see the value in choosing to spend a lot of time grieving what was or could have been. I was amazed that Kevin did as well in snowboarding as he did. Maybe if I had been the parent who wanted more than anything for my son to win a gold medal in the Olympics, I would have felt differently. But that wasn’t the important thing for me.

BLOOM: What would you recommend for parents who may be stuck in grief?

Pia Pearce: Support groups for caregivers are very helpful. I’m also a big fan of talk therapy.

BLOOM: In the film one of Kevin’s friends talks about how their roles shifted. Kevin used to be like his big brother and mentor, and now their roles are reversed. Have roles in your family changed?

Pia Pearce: I’m the mom and I’m still the mom and I’ll always be the mom! My role hasn’t changed. Adam’s role changed the most. Adam and Kevin were in the world of competitive snowboarding together and travelled together. They went from being brothers and best friends to one being so injured and the other being part of the caretaking team.

I think it’s important for family and siblings and friends to adjust their expectations of the person with brain injury, based on the ramifications of the injuries. I remember a therapist said it was hardest for parents when they didn’t get enough information from doctors so that they could adjust their expectations realistically.

BLOOM: What kind of brain injury did Kevin have?

Pia Pearce: He had an injury deep in the centre of his brain. He had to relearn everything—to swallow, walk and talk. It was like starting over with a baby, but on this warp speed. The major issues were memory, his balance and vision. He still has a lot of problems with double vision.

BLOOM: Kevin’s brother David, who has Down syndrome, plays a central role in the film.

Pia Pearce: A number of people say that David is the secret star.

BLOOM: I agree! How important was David’s plea that Kevin not return to competitive snowboarding because he didn’t want him to die?

Pia Pearce: Kevin and the other boys are very independent-minded and I realized that if I put on too much pressure it wouldn’t be helpful. But David could speak from his heart and Kevin could really hear him.

BLOOM: In one of the most moving parts of the film, David talks about hating Down syndrome.

Pia Pearce: David has a therapist and we’ve worked on that in therapy. We’ve always told David we want him to love who he is. Kevin, Adam and David have taken the film to the National Down Syndrome convention and other self-advocacy events and focused on the theme of acceptance. It’s had a very positive impact and David now is able to say that he does accept his Down syndrome.

It has been hard for him to make close friends—not so much in the elementary grades, but as he got older. More recently he has a close friend who he’s calling his girlfriend and that’s making a big difference in his life.

BLOOM: Does David work in your husband’s business?

Pia Pearce: He has three part-time paid jobs. He works in our glass-blowing business, and at a payroll agency and at our local fitness centre. He loves to work out at the fitness centre and they employ him in the operations department folding towels and filling soap dispensers.

BLOOM: What did Kevin find to replace the joy he got out of snowboarding?

Pia Pearce: He does still snowboard, but he does it for pleasure. He goes where it’s safer, where they have deep powder. He’s more aware of what a huge risk it is.

The biggest thing for Kevin and Adam right now is the foundation they started called Love Your Brain. They want to improve the quality of life of people living with brain injury. Their big push is offering free yoga classes to people with brain injury and their support workers. They’ve got pilot programs in Vermont and New Hampshire. Kevin has benefited so much from yoga and mindfulness meditation.

Kevin and Adam were just speaking to 900 managers at a Lululemon conference in Vancouver about partnering with them to promote yoga.

BLOOM: The film covers Kevin before and after the injury. Did you begin work on it before his accident?

Pia Pearce: No. We had a lot of family footage we’d taken and when Kevin began rehab, Adam and my husband Simon were great at having a camera around all the time. The doctor said that Kevin wouldn’t be able to see how he’s getting better, so it would be important to show him through video. We were able to give that footage to the director, Lucy Walker.

BLOOM: Has participating in the documentary helped or harmed the healing process for your family?

Pia Pearce: The process has been hugely helpful to Kevin and David. I can see how much it’s also helping other families who watch the film. That’s been a fantastic feeling for me: to take something that’s been so incredibly challenging and difficult and stressful and have amazing, positive things come out of it. One of the things I was happy about was that when we watched the rough cut I felt it was really honest. I felt it was an honest, accurate portrayal of who we are and how we dealt with it.

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Coming up: Interview with Pia Pearce

Next Wednesday is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

Some of you may have seen The Crash Reel, a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin's close-knit family, which includes four brothers, and the gruelling rehab that follows.

Pia talks about how her experience raising one son with Down syndrome and two sons with dyslexia influenced her reaction to Kevin's traumatic brain injury.

This interview is not to be missed. Louise

(Learn more about Kevin's foundation Love Your Brain, which raises funds to improve quality of life for people with brain injury.

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