BLOOM media round-up

By Louise Kinross

Last week we posted Ho, ho, humbug about how toy shopping can be a difficult time for parents whose children have disabilities.

Every year Ellen at Love That Max creates a list of regular toys that may work well with children with special needs, based on recommendations from therapists and parents. She just posted her 2015 list.

We had a comment on our post about how expensive specialty toys can be, particularly for a single mom. If you have any ideas on how to find great deals, or perhaps gently used toys, please comment below.

We also heard from Holland Bloorview family leader Susan Cosgrove about how she changed her gift-giving routine to make it manageable for her son with autism. 

Although it's in a different way, the holidays are a challenge around here too. I think it's hardest on Liam who is 12 and autistic. He gets so wound up about his Christmas list and wondering if I will be able to find the things he's asked for. He's not being greedy... But surprises and unpredictability stress him out.

Last year I let him choose and purchase his own gifts. One month before Christmas I give him a $100 budget. We purchase his gifts together (sometimes online). This year he chose Toys R Us on a Saturday. 

I wrap his gifts and put them away. He knows what he's going to get and plans what order he will open his gifts Christmas morning. For my own sake I wrap up a few surprise gifts, but we don't talk about those beforehand. 

It's amazing. It reduces his anxiety by 90 per cent, easily. He knows what's coming and plans his Christmas morning. I think it's a great system and could work for most kids who have anxiety. It's a small thing but it's been life-changing for us. 

Let us know if you have other ideas for making the holidays merrier. Here are some links you may find interesting.

Ontario's sheltered workshops to close forever, The Toronto Star

How one Paris start-up is becoming an Uber for people with disabilities Mashable

Don't get angry, and don't get even Paul Levy, former CEO of Beth Israel Deaconess Medical Centre in Boston, on why anger in negotiations doesn't work on the world stage or among senior clinicians in hospitals.

Study says disabled face clear job bias Boston Globe

How high-paid bosses blew it The Toronto Star
"...While the Community Care Access Centre bosses were getting massive pay raises, many of the therapists, personal support workers and nurses who actually provide care to patients were earning less than $25,000 a year and hadn't seen a pay raise in years."

Special needs traumatic stress disorder Seizing Hope
This parent notes that there is no P (post). "We get up and live these scary moments every day."

Wheelchair users 36 per cent more likely to be killed in traffic than pedestrians The Atlantic CityLab

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Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst

There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely.

For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available that Brennen can “play” with.

Christmas shopping has become a challenge, and though I try to resist it, every year I inevitably find myself in a toy aisle, tears streaming down my face with the realization, once again, that I am living in a starkly different world. While I dream of wrapping up the one thing my child will adore, the one thing that will attract his attention, ignite his creativity and give him opportunities to play and learn and grow, it is unfortunately not that easy. 

Finding products and toys that will work for Brennen is difficult. I look at items, analyze their potential, and ultimately decide that they are not suitable—that he can’t physically manipulate them on his own, and will be a complete waste of money. Sometimes I will purchase the toy anyway, in hopes that some miracle will happen and his skills will improve. 

Sometimes I just want to feel like any other parent shopping at Toys R Us, who can pick out a present for their child without having to stress about whether or not it will be used for its intended purpose, or be added to the pile of stuff that goes into a closet and never comes out.

Christmas is different with a child with special needs. Brennen can’t write a letter to Santa. He can’t tell me anything that he would like to ask for, or what he hopes to find underneath the tree on Christmas morning. He can’t get up in the middle of the night to exclaim his excitement that Santa has come, and he can’t unwrap his own gifts. 

I don’t even know how much he understands about Christmas or Santa Claus or traditions or magic, but we do it anyway. We bring Christmas into our home and we celebrate with all of the things that a little boy should have around him—love and light and wonder and joy. We do it for him, and we do it for us, as a family. 

It is important for Andrew and I to carry on with some of the things that meant a lot to us growing up. We love Christmas! I still get giddy thinking about my favourite Christmas songs (so many I can’t pick just one!), favourite Christmas movie (It’s a Wonderful Life), and favourite Christmas treats (my Mom’s (used to be Nan’s) apricot raisin cake).

My most cherished Christmas memories from when I was a child are never related to a present. They are memories of going to mass on Christmas Eve with my father and grandfather, Dad reading The Night Before Christmas to my sister and I no matter how late it was (every year until we moved out), having turkey dinner on Christmas Day with my Mom’s family, and a sing-along at my parents’ annual blow-out Boxing Day party (that is still a tradition today!). My favourite memories revolve around people, family, spending time with loved ones and celebrating the holidays together. This is what matters most to me, and this is something that I can continue with my own little family. 

Brennen enjoys the sights and sounds of Christmas. He loves to look at the twinkly lights on the tree, and we have Christmas music playing constantly. He is happy when he is surrounded by people, and he certainly knows that he is loved.

We have also started some new traditions. On Christmas Eve, instead of going out, our family and friends now come to our house to see Brennen before he gets tucked into bed for the night. Our schedule of events now includes the Janeway Children’s Hospital Christmas party, Easter Seals Breakfast with Santa, and the Rainbow Riders Live Nativity. These have quickly become our favourite and most anticipated events of the season!

We don’t go overboard with gifts. On Christmas morning, we take time to help Brennen unwrap each one, enjoying the sound of ripping paper, and the anticipation of what’s coming next! We focus on the importance of what the holidays are truly about—family and togetherness, kindness and giving, magic and wonder. 

 
If I were to give advice to parents of children with special needs this Christmas, I would have to say not to put too much pressure on yourself, and don’t expect things to be ‘perfect.’ 

The holidays are stressful for all parents, but our children’s special needs add an extra degree of difficulty. Try not to get caught up in the details, and just enjoy the time with your family. It may not look the way you had envisioned it, and it may not run as smoothly as you had hoped, but it can still be special. Focus on the positive things, and think of all the things you are thankful for. Find happiness in your child! 

Bruce Templeton, who has visited with 1,500 children dressed up as St. Nick, writes in The Man in the Red Suit: "It's your presence with your family that matters a whole lot more than anything that's under the tree. It's your presence, not presents that counts."

Julie Brocklehurst is a writer, an advocate and a mother to a little boy with cerebral palsy. She created her blog Tiptoeing Through as a place to share some of her thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Every month in her Tulip Tales series, Julie features a child with special needs from Newfoundland and Labrador and shares their amazing story. Julie is a director on the board of the Cerebral Palsy Association of Newfoundland and she runs a child care program for children with disabilities.

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A letter to my Bubbie

Laura Rosen Cohen has a teenaged son with a rare genetic disorder. This is a letter she wrote to her late grandmother, who was and remains a formative and towering figure in her life and who sadly passed away too soon.

By Laura Rosen Cohen

Hi Bubbie,

I started this letter to you a hundred times or more in my head, and each time, I started crying, so I had to stop, and try to focus on the positive until my breathing became more rhythmic, my limbs a little more heavy and relaxed, giving me a chance let my body and mind rest, and sleep away my worry for a blissful few hours while I have help at night.

When morning comes, and the sun returns to its rightful place on the new day’s horizon, my fears start creeping in again. I wake up, generally thankful and truly grateful for the new day and its blessings. But I confess, I look into the mirror and see a middle-aged woman looking back at me. That woman no longer has a special needs child, she has a special needs teenager, who will soon be her developmentally disabled adult child, a dependent adult different from other adult children—always. 

We had our first “transition” meeting, and I guess that has been sort of a trigger. The road from disabled child, to teen to adult is a bumpy one and I have to admit how scared I am to travel upon it. I’m driving into unchartered territory, toward the time in my life, to a destination called No Empty Nest, and will stay there for as long as my husband and I are well and able. I wish you could have met him, and my kids.

Even though I know you’re with me all the time, watching over me, I wish I had you here to talk to, really talk to. I wish I could hear your voice, really hear it out loud, and not just in my head saying “Laura, you are going to be OK, you can do this.” I wish you would make me a cup of sweet, milky tea in those white tea cups with the pretty purple flowers on them, and your banana bread, and we could sit in your kitchen, and let me feel your soft hands, and you would be humming old songs, and giving me more bits of wisdom that would carry me through my fears now as they did even then.

I guess what I’m saying, Bubbie, is that I’m scared. I’m scared of finding adult services and programs and doctors. I’m worried about how independent he will be even though I know worrying will not win any more independence than what he is actually destined to achieve. 

I’m concerned about making it as easy as possible for my other children to lead full and rich lives, with as much support as my husband and I can possibly generate to give them as much freedom and peace of mind as possible for when they start to navigate my son’s life on his behalf when we are no longer able.  

I’m worried about him having a meaningful life. And I’m sometimes tired, sometimes I grow weary from the constant need to project strength, to lead by example, to express a general sense of optimism and gratitude for what I have to others even when my reserves become low themselves or in the moments when I find myself momentarily and regretfully bitter, or even sadly—resentful. Yes it happens. These moments are fleeting, but they do happen. 

I wish I could sit back in your den and talk it out with you. If I close my eyes I can feel the fabric, and see the sun shining through the windows and hear a few notes on the organ, and hear you singing.

I know you know exactly what scares me before I go to sleep so I’ll be talking it out with you frequently, even if only in the peaceful no man’s land between consciousness and dreaming, when the line between your voice and mine converge into a dreamscape, as I try to retain and remember your sage advice and our conversations as dawn breaks and a new day begins.

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Why home nursing is not respite for one mom

By Marcy White

It looks good on paper.

After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home.

But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters so my son doesn’t choke to death—we’re facing alarming incompetence when they do show up.

Jacob has had registered nurses care for him every night since he was discharged as a three-month old baby. In those days, our challenges were nurses who fell asleep, a nurse whose eyesight was so poor she had her driver’s license revoked, and the one who was arrested for shoplifting at Winner’s when she hid items behind my son’s back on a walk.

Talk to a family whose child relies on home nurses and most have a story or two about workers who fall asleep during night shifts (I’ve never heard of anyone being disciplined because of it). 

But in the last few months, the mistakes nurses have made while caring for my son at home have alarmed me beyond measure.

One fell asleep at 3 o’clock on a Saturday afternoon. When I woke her up, she apologized, saying: “I’m sorry, I took too much codeine.”

Another nurse placed food from her fingers in Jacob's mouth, despite the fact that Jacob has always been fed through a stomach tube because of life-threatening breathing problems. At the time, he also had a collapsed lung and required frequent suctioning and oxygen. “Everyone should be able to taste food,” she explained.

There’s been a nurse who couldn’t speak English, one who repeatedly poked him in the eye and accidentally wrote on his face with pen, and one who’d never suctioned a patient before.

Another nurse thought 140 mg of medication was equal to 1.4 ml of liquid. She didn’t realize that one measurement was for solids and one for liquids. She thought they were interchangeable.

A day ago Jacob fell out of bed onto a hard tile floor because the nurse had him too close to the edge and the railing was down. Aside from a lot of crying, I’m not sure how he didn’t break something. When I reported this to the director of the nurse’s agency, she responded: “Thanks for letting us know. We will log it in our risk file.”

The nurses I'm writing about still work with the agency that’s the largest provider of pediatric nurses in Toronto. Prior to welcoming them into my home and introducing them to my son, I was assured that they had the qualifications and experience necessary to safely care for Jacob.

We have met a handful of wonderful, caring and skilled nurses. But although we’re funded to receive round-the-clock nursing, we can’t get consistent, competent care. Everyone involved knows this, but excuses are constantly made.

Until something as serious as death can be attributed to the malpractice of a home nurse, I’m afraid the system will continue to ignore the danger faced by the most vulnerable patients like my son.

Because of Jacob’s medical fragility, he is always at risk of choking. His breathing problems are constant and we rely on the skills of proficient nurses to clear his airway and administer oxygen and other medications when he turns blue. There is little room for error or hesitation when his oxygen levels plummet to dangerously low levels.

It’s safe to say that I’m barely hanging on at this point. I actually parked my car on Avenue Road the other day and as I was going into the bagel store I realized that not only did I leave the keys in the car, I left the car in park, running! A few days ago I went to pick my daughter up at gymnastics at night and ended up at her school by mistake. I am exhausted. I even have dreams about being tired. Perhaps it will be me who is hospitalized next.

Despite families like ours receiving funding to cover round-the-clock nursing, there’s no respite when you’ve witnessed many serious errors in your child’s care and a nurse “no-show” (with no backup) is just a call away.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

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How does disability enter into care decisions about preemies?

By Louise Kinross

Last week I read this post called One Size Does Not Fit All about “shared decision-making” between parents and medical staff in a neonatal intensive care unit. It’s written by a Winnipeg neonatologist. Kate Robson, who is the parent coordinator in the NICU at Sunnybrook, posted a link to the piece on Facebook.

In looking at challenges to agreeing on whether intervention should be offered to a small preemie, the doctor gives an example of a woman who is in advanced labour at the hospital at 24 weeks. At 24 weeks parents are given the option of resuscitation or no resuscitation. 

The doctor notes that he has about 15 to 30 minutes to share information and a pamphlet.

 
“…we do our best but don’t for a minute think that shared-decision making has occurred.” he says. “I don’t believe this is possible unless the family has prior experience with a preterm birth or perhaps is a health-care provider working with newborns or children with disabilities themselves.”

I posted a comment saying that he makes a good point that parents with no intimate experience with disability will have a hard time predicting what the experience will be like if their child is diagnosed with disabilities. But so will health providers who've had little exposure, over time, to families raising kids with disabilities. 

“In the same way that a parent who’s had no firsthand/intimate/long-term experience with disability can’t accurately predict what that experience will be like, neither can a health provider who lacks that kind of exposure,” I wrote.

Annie Janvier, a neonatologist at the CHU Saint-Justine Children’s Hospital in Montreal, responded to my comment on Kate Robson’s Facebook page).

“…and providers only see children and families when they are not at their best (sick, in hospital, ER...),” Annie writes. “They do not see them during their family life, at school or birthday parties. In the literature, you will find we, physicians, are very pessimistic when it comes to disability. 

“When I hear another physician/nurse/provider tell me ‘parents have no clue what disability is’ I often tell them ‘I don't think you do either.’ We have to teach families about adaptation, resilience, coping. While other areas of medicine (cancer, amputees, spinal cord accidents, colostomies) have examined that, we haven't. Parents want to know about happiness, functionality, family life, friends and relationships, love, regrets, etc., not a list of diagnoses.”

Thoughts? 

Katharina Staub, outgoing executive director of the Canadian Premature Babies Foundation, posted this comment.

“Having given birth to preterm twins at 27 weeks of gestation has been a life-changing experience for me. I remember the prenatal consultation very well, even seven years later. It was full of statistics, negative outcomes and I was alone late in the evening. I was 25 weeks—the consult left me bewildered, fearful and stressed. It was actually not a discussion, I was given information.

 
“‘Partnering With Parents, One Size Does Not Fit All.’ I do agree with this title. Each family is different, comes from a different place, has different values and expectations when they end up in a delivery room unexpectedly at 23 or 24 weeks gestation. 

“I think what needs to be looked at is what shared decision-making means. What does it mean to provide ‘pertinent information’ to families? Is it giving a lot of statistics? How do health-care professionals decide what information is to ‘be delivered’ ? 

“I believe that in a shared-decision model, there is a discussion about this baby—the family’s hopes and dreams. This does not have to be a two-hour discussion, but knowing about the family, their hopes and dreams, will help in guiding the ensuing discussion. Do we need to discuss all potential outcomes at this time? I don’t think so.

“A number of parents and I have written an article on this topic in June, 2014 in Acta Paediatrica: Our child is not just a gestational age: A first-hand account of what parents want and need to know before premature birth. The recommendations we make to health-care providers are as true today as they were then.”

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I wish I'd seen the beauty of sign language years ago

By Louise Kinross

Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up. 

Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars.

In preparing for it I got to look up many signs on Handspeak, which is a wonderful site where you can watch video clips of different signs.

I also typed out my story, but in the word order that is used in American Sign Language (ASL), which differs from English.

When my son was young, I tied myself up in knots over whether to use signs in English or ASL word order.

"ASL is a language completely separate and distinct from English," according to this description from the National Institutes on Deafness and other Communication Disorders. "It contains all the fundamental features of language—it has its own rules for pronunciation, word order and complex grammar."

Instead of recognizing the beauty of ASL as a rich language that stands on its own, I was always translating signs into English and then fretting that it wasn't "proper English." How would this affect my son?

So, for example, to ask someone's name in sign language, you use signs that translate as "You name what?"

We ended up using ASL signs, but in English word order because we were also speaking at the same time we were signing.

This meant we were never fully immersed in ASL and deaf culture. 

We were, as they say, sitting on the fence.

I think this happens to a lot of families when their kids with disabilities are young. They are bombarded with different therapies, techniques and approaches and advice from professionals and other parents and just about anyone on the street who will chime in to give their opinion.

What if I make the wrong decision? What's the right decision? 

Meanwhile, all those years ago, in terms of communication, I was conflicted about whether we should use sign at all. It isn't generally recommended by therapists who prescribe augmentative communication (voice devices, picture boards etc). "No one in the community will be able to understand him," I was told.

And it wasn't something that my son naturally took to because of his weak fine motor skills. On the other hand, most of the "words" my one-year-old daughter had were signs she'd learned from us signing to our son.

When we were out and about I felt self-conscious about signing. I wanted to blend in like the rest of the young families in our neighbourhood. I still "cared" about what other people thought of me (ha ha, how times have changed).

We tried to do everything: sign, pictures, a voice device, years of speech therapy. 

There are so many value judgments about all of these things, and even value judgments about approaches within each area. 

Of course speech is the most highly prized, which can push parents like myself to pursue it for years and years, even though the child is not showing any functional gains (or maybe that was just me, maybe I just didn't see the light).

My son has chosen sign language as being the mode of communication he's most comfortable with, and that is most efficient. He's still limited in what he can express because of his fine motor issues, which means we can't get a really rich understanding of his thoughts. But it is his language. 

A few months ago a person who's helping us with life planning suggested that we needed to get on board with sign language in a bigger way. I think she was surprised at just how little signing my husband and I did (and our other kids, despite going to sign language camp for years, do none. It had stopped being "cool").

So my husband and I took a course and a couple of our workers did too (when our son was very young, we'd gone to an immersion program and also had weekly lessons from a tutor).

I adored my sign language teacher this time around. 

She told the most amazing stories that always had us in stitches. Part of it was how visual and dramatic sign language is. It's so much more than hand signs, it's facial expressions and body movements and sounds. It's often like theatre.

I began to see how full and fun this language was.

The other day we went by our favourite party shop and my son was very upset to see a sign that said the store was moving.

He was looking in the window when one of the staff came out. She recognized him as he loves costume gloves and has bought many pairs there. They were selling everything at half price before their move, and she said she'd found a box of gloves in the basement that she wanted him to have.

This was like Christmas for our son.

But what was so interesting to me was after we left, he signed: "New building where?"

He was asking me where the new store would be located.

What stunned me was his use of the sign for "building," which I hadn't seen for years.

In the last couple of months, since we've begun consistently signing with him, he's starting to string more signs together in a sentence, and to surprise us with signs. 

In the past, we've often expected him to express himself in silent sign while we, and everyone else around him, "talk, talk, talk." 

Now I realize that we weren't entering fully into communication with him. We weren't giving him the message that sign language was this rich, credible language that was worth using. We kind of expected him to use it as a default, while we never learned more than the basics (which spoke volumes), and kept on chattering.

I'm excited about where things may go from here.

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What do disabled youth say about friendship?

By Louise Kinross

Youth with disabilities tend to have fewer friends and smaller social networks than their peers. And studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability.

Most of the research about friendship for people with intellectual disabilities is based on the perspectives of caregivers and support workers.

That’s why a three-year University of Toronto study called Voices of Youth is so innovative.

The project asks youth with intellectual disabilities aged 13 to 24 what friendship and community means to them.

“Friendship is very important for a happy life,” says David Conforti, a 25-year-old with an intellectual disability who’s a project consultant on the study. “I find it difficult to find new friends my age. We all need to feel connected to other people, that way we feel more safe and comfortable in our communities and lives.”

The Voices of Youth research involves three in-person interviews, including one in the community and one where participants are asked to invite a friend who will join them in an activity. A videographer is part of the research team.

“We’re videotaping to get less of an interview and more of an experience format,” says Shauna Eisen, an occupational therapist coordinating the study. “We want to make sure we catch a lot of different subtleties that we might miss in written answers. We also want to make the research accessible for people who might have difficulty communicating verbally.”

The research aims to get a youth perspective on “what friendship looks like and what some of the challenges may be,” Shauna says. “We also want to explore the definition of community, which is seen as vital for a balanced quality of life. Community engagement might be seen by some as physically engaging with neighbours or being part of different groups, or it might be an online presence.”

Researchers are working with three project consultants who have intellectual disabilities and three community organizations that work with people with intellectual disabilities (see photo of the team above).

One of these is Hand Over Hand, a non-profit in York Region that pairs volunteers without disabilities with youth with disabilities for monthly social events and activities. “I’ve seen the difference this peer-driven social experience makes from the individual’s perspective and from feedback from families,” says Shauna, who is a volunteer. “I’ve seen how much personality, how many skills and abilities are brought to light with this type of opportunity.”

Voices of Youth is wrapping up its second year and will eventually produce a video that incorporates what participants had to say about friendship and their experiences.

The research, a partnership with McMaster University, is supported by the Social Sciences and Humanities Council of Canada.

Participants are still being recruited. To get involved, e-mail Shauna at voices.ofyouth@utoronto.ca.

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Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross

The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.

He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.

That night, when I asked him about it, he signed that there were two cats. They were black and white.

(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour and the other wasn’t. It’s amazing how much you can lose when communication is fuzzy).

They were small, he signed. He got to pet them. In his job he would feed them and clean their cages and do paperwork for adoptions.

“What were the cats’ names?” I asked.

 He made the sign for ice-cream (which in a different context could also mean “lick” or “lollipop”).

“Ice cream?” I said.

 No, he signed.

 Licky Tongue? This is a Pokemon character he used to like.

 No.

“What is the first letter in the name?” I said. I grabbed a piece of paper, a pen and a book he could write against and thrust it upon him.

I felt like a desperate contestant on a game show.

He kept repeating the original sign. He didn’t want to write down a letter because it’s hard for him to write.

“Please, just the first letter.”

Finally he wrote an “L.”

“L?” I asked.

Yes he signed.

“/l/” I said, sounding the letter out phonetically.

“/l/ is for lollipop,” I said, referring to the Jolly Phonics system we’d used years ago to teach him to read.

Yes! he signed exuberantly.

“Lollipop?” I said. Was this a clue or the answer? Unfortunately, the wheels don’t turn that quickly in my mind anymore.

“Lollipop is the name of the cat?”

Yes, he signed. Then he began to clap.

“The cat this morning was called Lollipop,” I yelled out enthusiastically to my husband.

I felt like I’d hit the jackpot on Jeopardy or just won a brutally competitive game of charades.

“What was the other cat called?” I said.

My son looked at me blankly. He got up and walked into his room. I couldn’t blame him for giving up.

About 10 minutes later I was still thinking about the cat called Lollipop.

One of the cats was black, he’d said. Suddenly “Licorice” popped into my mind. Licorice would be the perfect name for a black cat.

I raced into his room: “Is one of the cats called Licorice?”

“Yes,” he signed.

“Licorice and Lollipop!” I exclaimed. I gave him a high-five and screamed out the news to my husband.

Then I texted the worker who was with Ben that morning. “Was one of the cats called Lollipop?”

Sometimes my son gets so frustrated with our inability to interpret what he’s saying that he’ll sign “yes,” just to get me off his back.

“Yes,” the worker wrote back. “He read the cat’s name on the adoption paper.”

“Licorice?" I typed in. “What about Licorice?”

“Yes.”

It had taken about 30 minutes to determine that the cats Ben saw were in fact called Lollipop and Licorice.

But what if I’d stopped guessing after getting “ice cream” wrong?

I shared this tale last week at a talk by Dr. Franco Carnevale, ethicist and psychologist at McGill University. Dr. Carnevale worked for decades as a nurse in the pediatric intensive care unit at Montreal Children’s Hospital. 

Dr. Carnevale asked how we can better hear the voices of disabled children in healthcare, particularly those with intellectual disabilities or who can’t speak. The question is on the agenda of VOICE—an interdisciplinary research team he’s leading to identify and address ethical issues in Canadian children.

Dr. Carnevale encouraged us to think of children as agents “who have a capacity and intentionality to engage and form meaningful preferences and to direct those preferences in a way that matters. They have an intentional, meaningful engagement with things that matter to them.”

He said the concept of a child’s best interests must be “highly informed from the child’s agency, from their expression of interests.”

This is particularly challenging when a child can’t communicate in conventional ways. “We consider all young people as vulnerable, but there are all kinds of ways that young people who have any form of compromise in their expressive capacity are additionally vulnerable and marginalized," Dr. Carnevale said. “We don’t have a clear way of understanding how things matter to them. Does that mean their voices matter any less?”

Dr. Carnevale spoke about how solving ethical issues in medicine usually centres on the child’s “best interests. But there’s no agreement on what that is," he said. “When we do case consultations, people make rival claims on what is in this child’s best interests.”

He noted inherent problems with the way we assess best interests.

“The interests are being evaluated and declared by adults without the recognition that adults have interests that may not be congruent with the child” he said. “There is an inescapable subjectivity when adults—healthcare professionals and parents—assert what is in the child’s best interests.”

Dr. Carnevale said we tend to systematically underestimate children’s ability to participate in treatment decisions. In addition, our understanding of capacity is poorly developed and often arbitrary. “You either have capacity or you don’t,” he said. “There’s a threshold. If you’re below that, what you want and how it matters has no ethical weight. I worry deeply about the common ‘all or none’ tendencies among clinicians' views of mental capacity.”

When considering what’s best for a child, “suffering” and quality of life are discussed. “But almost always these are incongruent with how people with disabilities themselves describe their quality of life in studies.”

Dr. Carnevale said the treatment teams who make life or death decisions about whether to continue or withdraw care don’t have experience with children who survive prematurity or injuries with medical complexity or disabilities. “We’re imposing highly uninformed concepts of quality of life with the illusion that they are objectively verifiable.”

Clinicians need to strive for empathic attunement, he said, which he described as “not just trying to get the emotive sense of a person, but trying to get what that person’s perspective is like. We need to find a way to foster intellectual humility on very complex concepts.”

As a reminder that medical beliefs can be based on biases, not science, he recalled that when he began nursing in the 1970s clinicians didn’t treat pain in newborns. That’s because they believed newborns didn’t feel pain. In fact, studies now show newborns may have a heightened sensitivity to pain.

Dr. Carnevale said he’s horrified to recall how he and other clinicians performed painful procedures on infants, without pain control, despite the fact that the babies grimaced.

Is it possible that we misjudge capacity, and what matters to a child, in a similar way?

How can we be so sure of a child’s inner world when they can’t express it in ways that we understand? 

Dr. Carnevale said our concept of best interest must be “maximally informed by the child’s own important information on how things affect them. I worry that we too readily dismiss the importance of taking the required time to understand, by conflating communicative difficulties with experiential compromise. It's easy and tempting for someone who is rushed to assume all words are meaningless.” 

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'I was raising him on my own'

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

Meet Joshua Bennett, 17, who’s heading off to Georgian College to study automative business. Joshua has cerebral palsy and was raised by his mom Roma. “When you’re a single parent, you tend to have to do everything yourself,” Roma says. “So, it wasn't only going to appointments, medical appointments. It's going to school appointments and being challenged by the teachers who may think that Joshua's not going to do very well in school, and so challenging them back… I’m a mama bear and I thought differently.” 

See how Roma did it and hear Joshua’s advice for other kids with disabilities. 

*This video is captioned. Click on the CC at the bottom right on Youtube.

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More than meets the eye

By Sue Robins

There’s been a tropical storm on the Hawaiian island of Kaua’i and the one-lane bridge to the North Shore is washed out. We’re renting a cottage in Hanalei and decide to venture north to Ke’e Beach. Paradise in the rain is still paradise to me.

When we get there my son Aaron, 10, refuses to go to the beach. It’s filled with debris from the storm, and the water is unsettled. I understand his thinking: what’s the point of a beach if you can’t go swimming? My husband and daughter venture ahead. I stay behind with my willful child in an empty parking lot. He’s content to pick rocks and investigate the lifeguard tower.

Two people on coaster bikes appear: a mustachioed dude in a trucker hat and a stunning young woman. We exchange hellos.

“Are you from North Dakota?” the guy asks me with a smile.

They’ve been eavesdropping on us Canadians and our flat accents. We get to chatting—about the monk seal sighting at Tunnels Beach, about the awesome burritos at Red Hot Mamas down the highway. He has a home in LA and one here, he says casually. This guy looks familiar to me, but then, he looks a lot like a local surfer guy too.

“Hi there,” he says to Aaron. “How old are you?”

Aaron has Down syndrome and can be difficult to understand, but the surfer is patient and waits for Aaron’s answer. He’s genuinely interested in my boy, and that makes him utterly charming to me. He has a son too, he says, who’s five.

The young woman, Helena, is from Melbourne. We chat about the amusing rivalry between Melbourne and Sydney. She doesn’t have a stick of makeup on and is very beautiful. But she also has a quick wit that keeps her older man in place, and an easy, lovely laugh.

The three of us exchange stories about different health systems. “I once tried to give the nurses my credit card in an emergency room in New Zealand,” he says, “They laughed at me and wouldn’t take my money.” This unassuming dude is clearly well off and well travelled, too.

“Where are you from in Canada?” he asks.

“I’m from the west, above Montana.”

 “Where in the west?”

“Edmonton.”

“I was there in January!” he exclaims.

Edmonton in January? I rib him. Nobody travels to Edmonton in January.

“I was there for work,” he says. “Vancouver, Calgary, Edmonton and Winnipeg.”

I squint at him.

And suddenly, I know who he is.

It’s Anthony Kiedis from the American band Red Hot Chili Peppers. The cities he’s listed are destinations on a Western Canadian band tour.

I take a deep breath. Do I start sputtering fan-girl accolades?

I hesitate, blink and choose to soldier on. We’re debating how to pronounce the word “herb”—those of us from the Commonwealth say “urb” and find the American pronunciation of “hurb” amusing.

My daughter Ella wanders back and Aaron insists we introduce ourselves.

“I’m Anthony Kiedis,” he says.

I knew it. It’s him.

Here we are, hanging in the Ke’e Beach parking lot: One teenage girl, a kid with Down syndrome, an exotic supermodel, a famous rock star and me—the suburban mom.

But under the swaying palm trees, we aren’t any of those things. We’re just a collection of folks gabbing by the beach.

My husband returns and Aaron is listless. It’s time to wrap up. Anthony and Helena climb back on their bikes, wave goodbye and ride away.

“Who was that guy you were talking to?” my man asks, puzzled by my exuberant, chatty behaviour, which is out of character for my introverted self.

“That was Anthony Kiedis,” I say.

My husband’s eyes pop, and he grabs the arm of the nearby lifeguard.

‘That guy was Anthony Kiedis?” he shouts.

“Yeah,” the lifeguard says. He shrugs. “He just lives up the road.”

Later, back home in Canada, I’ll hear a Red Hot Chili Peppers tune on the radio. The temperature is below zero, but I warm as I remember our lovely encounter with that dude on the beach.

I know I know for sure
That life is beautiful around the world
I know I know it's you
You say hello and then I say I do
from All Around The World

Nobody is ever just one thing, I think. Anthony didn’t dismiss me as a boring mother, and he didn’t treat my son as a disability. I chose to see him as a dude first and a rock star later.

In the disability world, we preach that people are people first. I see that this is true in the rock star world too. 

Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. 

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The story behind Robert Munsch's 'Love You Forever'

By Louise Kinross

I made up my own melody.

When my son was born with "unusual features" and a suspected genetic condition, Robert Munsch's Love You Forever popped into my mind.

Singing the lines in the hopes my baby would "feel it" was a way to defy and deflect the doctor who treated him like a piece of broken machinery and trotted out a litany of things that were "wrong" with him at an hour old.

I’ll love you forever,
I’ll like you for always,
as long as I’m living
my baby you’ll be.

In Munsch's book, a mother creeps into her son's room after he's asleep and picks him up and sings this song as she rocks him.

She sings it during the "terrible twos," when he flushes her watch down the toilet; she sings it when he's nine and tracks muddied shoes and bad words through the kitchen; she sings it when his loud teen music makes her feel like she lives in a zoo.

Her grown son moves away from home, and even then, she drives to his house at night, a ladder strapped to the top of her car, so she can climb in the window and sing to, and rock, him again.

Eventually, the mother gets old and calls the son to come see her. When he comes over she begins to sing the song, but she can't finish it. She's too sick. So he picks her up and rocks her in the rocking chair while he sings it.

The book captures the beauty and fragility of life and the undying bond between child and parent.

Many years ago Robert Munsch came to Holland Bloorview to interview a client of ours who was the inspiration for his book Zoom, about a girl and her power wheelchair. I got to meet him.

What I didn't know then was that Mr. Munsch had himself experienced loss as a father.

Today I read an article that linked to this description of the book written by Mr. Munsch on his website:

"Love You Forever started as a song.

I’ll love you forever,
I’ll like you for always,
as long as I’m living
my baby you’ll be. 

I made that up after my wife and I had two babies born dead. The song was my song to my dead babies. For a long time I had it in my head and I couldn’t even sing it because every time I tried to sing it I cried. It was very strange having a song in my head that I couldn’t sing.

For a long time it was just a song but one day, while telling stories at a big theatre at the University of Guelph, it occurred to me that I might be able to make a story around the song.

Out popped Love You Forever, pretty much the way it is in the book."

I was always drawn to Munsch's book, but assumed that the author knew only the typical parenting experience, the normal life cycle in the book where the child grows up healthy and happy through all of the regular stages and ages.

Reading that the narrative in fact emerged from Munsch's love and loss of two children, who were born "still" in 1979 and 1980, is haunting. It was a love letter to the children he never knew.

Munsch sings his version of the song on his website (quite different from the one I sang to my children), and encourages readers to send in the melodies they created.

"Everybody makes up their own song for this book... If you send me your version, either as a tape or an audio file or a MR3 file, I will try to put it up in the LOVE YOU page. If lots of people send me their versions, I will not be able to put them all up, but I would like to hear them even if I can’t put them on the site.

The way I sing it in the story is just MY version. You are supposed to make up your own."

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Parent, advocate takes on role at London's Children's Hospital

By Louise Kinross

“It’s a dream job,” Darren Connolly says, and it’s a world away from the bank call centre where he once worked. Darren is the new family advisor of the Pediatric Family Resource Centre at Children’s Hospital at the London Health Sciences Centre in London, Ont. His role is funded by the Children’s Health Foundation at the hospital. Darren says that parenting his son Tyler, 11, who has cerebral palsy and complex medical problems, inspired him to want to work with other families on a similar journey.

BLOOM: Tell us a bit about Tyler.

Darren Connolly: He has cerebral palsy and is medically fragile. He’s g-tube fed, and won’t walk, talk or crawl. He’s in a wheelchair and needs help to do everything, including eating. Tyler loves Challenge Ball, bowling and the Easter Seals Camp’s high ropes course. Sometimes he just loves it when I don't speak, hold his hand and watch a Pixar movie. Tyler loves school and is fully integrated in Grade 6. He travels with an educational assistant and nurse.

BLOOM: How did you move from banking to the non-profit world?

Darren Connolly: I wanted to make more time for Tyler and I had a strong desire to get involved in the disability community. Almost seven years ago my wife Helen and I started a medical supply business. We knew firsthand that the price of products was so high and felt we could do something about it. At the same time I started volunteering with March of Dimes and Easter Seals and the Sunshine Foundation. I really enjoyed the advocacy and volunteering and decided I wanted to be involved in that side, rather than the selling of products.

BLOOM: What do you do as the family advisor?

Darren Connolly: We have 52 amazing parent volunteers and I coordinate our parent and family hours on the different floors. These are parents whose children have spent time in the pediatric critical care unit or months in the neonatal intensive care unit, and they want to give back. So they donate a Saturday night or a Tuesday afternoon. We set up snacks in a waiting room or the kitchen and sit with families and encourage them to meet other parents in the hospital and share stories. Sometimes we have guest speakers.

BLOOM: What’s available in the actual resource centre?

Darren Connolly: Our initial focus was books and brochures, but as technology has progressed and parents have connected online we have four computers they can use here. Parents can do research here or borrow a laptop from our lending program to Skype with family if they’re a long way from home.

One of the big things I do is connect families to community resources as they leave the hospital. For example, we have a Snoezelen room called the Smile Room that kids love. Once they leave, we want to encourage them to use outside resources, so I’ve connected them with a Snoezelen room run in the community by Community Living.

We also have a lawyer on site through Pro Bono Law Ontario and two law students. The students are available to help families fill out forms to apply for grants or funding. Sometimes those forms can be overwhelming.

BLOOM: What do you bring to the job as a dad?

Darren Connelly: Most of our family advisors are moms, so it brings a bit of balance, I think, to have that father perspective. We’re seeing more dads come by the resource centre and feel comfortable here. I had a meeting with a dad this morning. His family has a tough road ahead with their son and has lost a lot of hope. I was able to talk with him about living in the moment and not spending all of your energy worried about what’s coming, or what could come, in the future. I think he left encouraged and will come back.

BLOOM: You obviously have credibility with parents because you’ve walked in their shoes.

Darren Connelly: It’s all about lived experience. We’ve spent time here in the PCCU, in the NICU, in the trauma unit and on the floor. Our parent volunteers have experience from all areas of the hospital.

BLOOM: What’s challenging about the job?

Darren Connelly: One of the social workers took me on a tour of the hospital and the emergency department and we walked into a room and she said 'This is the resuscitation room' and I took a deep breath. I immediately went back to that time when my child was in that room and we weren’t sure what the outcome would be. That was hard. But at that point I realized I need to take this in and then let it go, allow it to float through me. You can’t build any walls with this job. It’s about being real and understanding the journey of the families and you need to embrace that. Even on the dad side you need to be a little bit vulnerable.

BLOOM: What has working in the hospital been like so far?

Darren Connelly: It’s a dream job. But at the same time you’re working in a very complex world. You’re not a doctor or a social worker. You’re a parent who’s walked the journey and you need to be really cautious that you don’t give any medical advice. I talk about the experiences we’ve had and the things that have worked for us, where there have been positive outcomes. Parents who are struggling want to hear about how you or other families got through a similar situation. 

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Austerity cuts threaten to silence British writer

By Penny Pepper
 
From humble beginnings on a council estate, bereaved of my father aged seven, battling a personal fight with the pain of juvenile arthritis and the bigger war against a discriminating society—I now find myself at a threshold.

My memoir First in the World Somewhere is launched on the crowd funding publisher Unbound and will later go into the shops via Penguin Random House.

The memoir details my fight to break free from the constraints of an unhappy home, but also celebrates the wild adventures of my time as a singer songwriter, pushing my way into the vibrant scene of the mid '80s onwards, into crazy connections with music makers and writers and ending with my second marriage to an eccentric archaeologist in 1999.

This is my passion: to tell the story. Having reached a certain level of success as a writer, poet and performer I feel comfortable to tell my own tale.

One reason I feel the memoir has been taken up is that these stories have not been told. Not so much stories about personal experience of impairment, but stories where we confront the barriers that constrain us, forcing us to exist in a shadowland.

It’s ironic this comes against the backdrop of Britain’s most severe government attacks on disabled people in many years. They say we are all in it together, they say everyone has to feel the pinch. But as disabled people do not have equality in the first place, the cuts made are truly unkind and immoral.

One of the worst has been the closure in June 2015 of the Independent Living Fund (ILF). I paid for care workers from the ILF and the closure is terrifying, after 27 years of supporting severely disabled people like myself to live in their own homes.

The government clearly lied as, day by day, accounts are collected which highlight the lack of provision and evaporation of the so called “transition money”—through which local authorities were to take over the funding.

A close friend who I’m advocating for has had a 48 per cent cut in his social care as a result. For example, this translates into “no food or drink for five hours during the day.” It’s been suggested that his personal assistant do his weekly shopping in one hour. My own review will happen in March—I have no idea of the outcome.

As a writer/performer, like anyone in a similar position, I grasp all opportunities. But every one of them is reliant on my care support—and let’s be plain, I’m frightened. Never mind the work I love, this support starts the moment I wake up, when my care worker Emma helps me out of bed, to use the toilet, to have breakfast, get dressed and so on.

I was on ILF from 1998 when my first marriage ended. Before that, my husband did the bulk of my care. It worked for a while but when we split up, ILF allowed me to remain fully supported at home.

This was the true beginning of my adult life. A rebirth, underpinned by my new understanding of disability activism, and my involvement in disability arts. ILF, through the care workers it paid for, under my control, to match my needs and life-style, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.

I left the parental home at 25—after a struggle—to live with my best friend Kate, who was also disabled. We had six hours a week home-help to share. How did we prioritize our care? Having a hair wash often came above eating. We were often ill and never went out without immense logistical planning.

Fast forward to 2015. Disabled people fought for a lot and we won’t give up on what we’ve achieved, refusing to lose those services which gave us a semblance of equality. Attitudes remain variable, the right wing tabloid press loves a good story about a disabled “scrounger,” and it also loves a spread on a Paralympian. Disability hate crime is up 70 per cent —and I’ve certainly experienced that on the streets of London.

But outside statistics, starting from disabled communities themselves, there is a strong growing connection to the mainstream anti-austerity protest and a realization that impairment does not only equate to a wheelchair. There are sensory impairments, learning difficulties, long-term health conditions and mental health problems. All face the attacks of austerity differently, but with similarly frightening outcomes—a cut in support or benefits.

As for me, I have to pitch to get pledges for First in the World Somewhere, to bring it out into the world with its message, told through the tales of my rascally goings on, of highs, of lows, marriage, divorce, music and words. Always words. Reminding the world disabled people are part of the broad experience of the human condition. We have a right to be, and a right to tell our tales.

Read about Penny Pepper and the current tour of her one-woman show at http://www.pennypepper.co.uk. Photo by Elixabete Lopez.  

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