A deadly disease takes a family captive

By Marcy White

I hate Pelizaeus-Merzbacher disease (PMD).

On March 21, 2003, I was told that PMD was the cause of my son Jacob’s many medical problems. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had so weakened his immune system that a cold required him to have mechanical assistance to stay alive, my hate relationship was in full swing.

These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme. When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying “life isn’t fair”—often used half-heartedly by my parents when I complained as a teen about not being allowed to go to a party with friends—is 100 per cent accurate. Life isn’t fair and my son’s disease is proof of it.

Life’s cruelty and my abhorrence of PMD crashed into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.

The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this, alongside their brother, is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this injustice every day.

When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.

I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much injustice in that scene, but also a ton of love.

My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.

Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98 per cent to a dangerously low 77 per cent in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.

Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake is thinking about how PMD is affecting my twin daughters.

Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.

Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.

How do I hold it together when they ask questions like “Why doesn’t home feel like home anymore?” or “Why does my life have to be harder than everyone else’s at school?” or “Will a cure for PMD be discovered in time for Jake?”

These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends’ families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.

We love Jacob with every fibre of our beings. But we hate PMD.

This piece originally appeared in Her Magazine. You can follow Marcy White on her blog Cure PMD or read her book The Boy Who Can.

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Why your kid's sniffles make me sweat

By Jennifer Philp Zakic

I have a confession: whenever I enter a new place, I scan the room for signs of infection. I look for runny noses, speculate about whether the cough I hear is a “real” cough, and ask people “Do you currently have, or are you getting over, a respiratory virus?”

When I walk into a grocery store, I cringe at the thought of using a cart. I have learned to take Lysol wipes with me everywhere, and this eases my concerns, albeit ever so slightly. I always have a bottle of hand sanitizer near me, and I put it on about every seven minutes when I’m outside the home. I feel explosions of relief in the pit of my throat whenever a friend cancels on me because they suspect a cold is coming on. I rarely go to parties anymore. If I do, I’m the weird girl in the corner who only talks to people she’s known for at least 10 years.

By nature, I’m not a paranoid person. I’m not even a shy person. I have no definitive phobias toward germs. In fact, I’m usually the one who pulls the mystery food out of the fridge at work.

I am simply trying to protect my son, Branko (above right, with sister Nina). His last respiratory infection occurred in August, and it was, not to sound technical, a real doozy. His lungs were so full of junk that he was intubated for a week. It would be really wonderful to never have that happen again.

Our son, Branko, has a complicated medical history. Depending on your proximity to the world of special-needs parenting, his condition would either scare the pants off you, or not shock you in the slightest. He has skeletal dysplasia, caused by a chromosome 12 microdeletion, which affects pretty much every bone in his body. However, the only life-threatening aspect of this condition relates to how his ribs have grown. Funny. They have grown very funny. And small.

To sum it up in the simplest of terms: small ribs = small lungs. The actual cells and alveoli function beautifully but those pesky, funny ribs are restricting the movement of the lungs. As a result, he has spent an extraordinary amount of time in an ICU bed. He has had two unplanned intubations. Oh yeah, almost forgot, his heart stopped for five minutes one time because he had a Rhinovirus, aka The Common Cold.

For strangers or people I haven’t seen in a while, attempting to condense the summary I’ve just given is hard. It’s hard to accurately convey the severity of his situation. I either provide way too much detail—and watch as my listener’s eyes glaze over—or I don’t give enough, and I look like an overbearing and paranoid parent. I would hate to think that people assume I’m avoiding germs just to escape the inconvenience of a runny nose and a lost night of sleep.

Since his last respiratory infection in August, we've kept Branko in quarantine. He just had his first playdate in five months. He rarely sees other children now, and when he does, it will be a one-on-one playdate. It was a difficult decision to make, because he has always had some degree of social anxiety. I feel incredibly guilty for adding fuel to that fire.

At first, we tried to keep going on with our lives as if everything was normal, but this attitude led to some tricky situations. At the park, a friend’s sick child excitedly ran up to Branko’s stroller to say hello. At a birthday party, a friend-of-a-friend casually mentioned that her daughter, who was sitting right beside Branko, had been sick for three weeks.

We quickly realized that most parents have no problem sending their children out into the world with a cold. In an effort to kill hundreds of birds with one stone, we used social media to tell our story. It only took one Facebook post to make people understand that yes, we might run away from you if we see you at the store, and no, it wasn’t anything you did. And it worked. I realized that the people in our lives—friends, acquaintances, friends from former lives—were all really wonderful people. Now they understood. They hadn’t been through it themselves, but they got it.

There are a lot of things we don’t do anymore. We don’t go to birthday parties. We don’t go to the museum. My husband and I avoid crowded places, especially with people who aren’t aware of our situation. And did I mention the hand sanitizer? I own plenty of hand sanitizer.

But Branko still does so much. We have turned his weekly hospital appointments into an adventure. It’s not just a car any more, it’s a safari ride blasting all of his favourite songs. As an exclusive treat, we let him use the iPad in the waiting room, and I’ll admit, those days usually end with a trip to the toy store.

And sometimes, one of us will take him shopping so that the other parent can simply have some peace and quiet. We take him to larger, open, less crowded stores with the idea that fewer people and more space might reduce our proximity to viruses. We keep him busy at home. We reach out to other people when things get tough. We understand the importance of having time to ourselves, without our children. We complain. Some days are darker than others. There are days when I have no idea how long the TV has been on, and other days where I don’t turn it on at all.

Some days, I am swimming in fear. I try not to get angry when we visit the hospital for Branko’s monthly RSV vaccination. It’s in a very unfortunate location, right next to the children’s walk-in clinic. I try not to be angry with the parent who lets her sick toddler run up to our stroller—the blue one with the sickly looking boy attached to a portable oxygen machine. I try to keep my cool, but it’s really hard.

This past weekend, Branko’s dad took him to his first playdate since August, with one of our oldest and dearest friends. For the first 30 minutes, Branko had a meltdown. He clutched onto his dad’s neck and begged to go home. His little friend was determined to snap him out of it, hiding and reappearing from underneath the furniture. After a few minutes, Branko was laughing. My husband sent me a picture of the two boys playing together on the floor. I exhaled deeply when I saw the picture: this was Branko, being just fine, in a non-quarantined world. I saw a glimpse at our possible future.

We have a difficult decision to make, and that’s when to lift our quarantine, since Branko is eligible to attend Kindergarten in the fall. I often wish that parents of medically fragile kids could look into a crystal ball, or at least have the superpower to see viruses with the naked eye. Until this is possible, I guess I will continue to be the weird girl at the party, scanning the room for runny noses and speaking to a scant handful of people. Please don’t be offended.

Please follow Jennifer Philp Zakic on her blog Branko Has Funny Bones.

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Want to know what kids think? Just ask

By Louise Kinross

Tommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.

Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”

The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.

“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”

“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”

Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.

The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.

For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.

The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott, Holland Bloorview’s outpatient playroom coordinator.

“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities will be systematically marginalized for the rest of their lives—so if engaging them in a council helps them become their own advocate that’s an incredible life skill down the road.”

When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”

Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.

The council meets on a project basis to consult with hospital and external programs looking for input from this age group.

Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it note on items they’d like to see in the playroom. "The toy catalogue captured data from kids who weren't as verbal or who are shy,” Daniel says. “We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids get could in and out independently—and getting a wheelchair accessible art easel and sensory table. We also lowered the level of shelving and made it open and at eye level for kids.”

Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn't presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”

Another client who's lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. "These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief," Daniel said. As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.

They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they're developing are easy to use and fun, so Martin and Tommy and friends came out for a night of video-game playing (in the photo they're with scientist Elaine Biddiss, right, and their mom Andrea, left).

“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy's mom.

Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.

“This is teaching them skills they'd never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They're learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can't hear him. That’s something we practise.”

To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.

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How many red flags on mental health do we need?

By Louise Kinross

Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.

There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.

There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.

The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.

When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population. 

They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.

They identify these ways to help promote mental wellbeing: 

Practise self-care.
Ask yourself 'How am I doing?'
Ask for help.
Try not to be too hard on yourself.
Recognize your achievements.
Plan time for yourself.
Take a break from caring.
Build supportive relationships.
Talk about how you feel.

I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."

"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").

I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.

The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."

They got that right.

So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?

I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night? 

When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.

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A brother's story fuels autism researcher

By Louise Kinross

“I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre.

Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome.

Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network study that follows over 300 children and young adults.

“The goal is to understand how genes and biology affect the brain and behaviour in autism and other neurodevevelopmental disorders,” Susan says. That includes attention deficit hyperactivity disorder, obsessive compulsive disorder and intellectual disability. Participants give a blood sample for genetic analysis; have a brain scan; do interviews and questionnaires; and choose whether they wish to participate in a medication trial.

Susan’s role includes conducting detailed parent interviews that track “everything you could imagine about a child’s history back to birth: sensory issues, anxiety, sleep, eating, medical history.”

Her passion for understanding autism stems from her own family’s experience with incorrect information when her brother Rick was diagnosed in the early 1960s (see Susan top right in photo, with her siblings). 

“My mother was told that Rick’s autism was the result of poor parenting,” Susan says. “The implication was that somehow she had damaged my brother and the only treatment offered was psychotherapy for her. When she pointed out that she had two typically developing kids in the waiting room, the response was ‘but they’re girls.’ The way my mother and father dealt with it was to be an open book—to share our story to move understanding along. My mother wanted to educate people to help the next generation of families.”

Susan’s work on the POND study feels like coming full circle from her family’s experience of being blamed for her brother's autism, she says. “I used to worry about the lack of quality research into autism and now I get to work in a lab led by a child neurologist, a psychologist and an engineer that’s doing quality research that’s going to advance our knowledge and potential interventions.”

Susan has fond memories of her childhood. “When we lived in a small town my sister and I would take Rick on adventures that we didn’t fully explain to my parents. My older sister was the boss and I was the little sister. Rick would go cliff-climbing with us or ride his bike with us out into the country or go to the race track with us.”

Rick never attended school. “In some towns we lived in he went to programs run in church basements by 'the Association for the Mentally Retarded.' But the rest of the time he was with my mother and he liked to help her with cooking and cleaning and doing the laundry.”

In his early teens Rick went to live in an institution. “I feel very guilty about it,” Susan says. “I’ve never talked to my sister about it but I’ve always felt that some of it was that my parents thought it would be the best thing for my sister and me. That’s what they were told. Rick got very sick when he first went. There was a long period of time where we were told that to help him adjust we weren’t allowed to see him. That was hard. I think I blocked out a lot of things I didn’t want to remember.”

As a teenager, Susan worked with other children with disabilities. “My mother volunteered me to babysit for free for a family that had a child with autism. I think I knew I had skills working with individuals with disabilities and their families.”

That led her to study psychology at university. Ironically, Susan did an eight-month clinical master’s placement at the same institution her brother had once lived in. “It was eye-opening,” Susan says. “There’s a reason they were closed. They’re not the ideal setting for most people.”

Rick was one of the first people transitioned back to the community. He now lives in a group home and visits Susan and other family members every two to three weeks. At 60, he loves horse-back riding, sawing wood and fancy restaurants.

After graduating Susan spent decades educating people about autism, most recently at the Geneva Centre for Autism. “What people remember most from my talks is the examples I’ve given of my brother. As a family, we always talk about how Rick has educated two generations of workers. When I did public speaking there was always someone in the audience who knew Rick. One time I was talking about strengths and how just because you can’t talk and didn’t go to school doesn’t mean you don’t have strengths, and a woman in the audience started crying. It turned out she’d done her master’s research on my brother and had interviewed my parents. Rick’s had a huge impact on a whole lot of people’s lives.”

In recruiting families into the POND study, Susan feels she’s enabling youth and families to continue educating professionals. “I was consenting a kid into our study and one of the questions is ‘Why do you want to be in this study?’ This boy said ‘I want to be in the study because I can talk and I can tell you things that those other kids at my school who can’t talk aren’t able to. I’m speaking for them.’”

Growing up, Susan’s family participated in lots of research studies but didn’t typically hear back on the outcome. “I’m proud of the fact that we have annual science days for our POND families and the principal investigators come and explain how they’re using the data. The families are giving us their time, their information, and opening up a lot of stuff for us. We have a responsibility to respect them.”’

Susan believes her experience as a sibling to a brother with autism and as a parent to her own children helps her draw out the information she needs from parents.

She’s excited that the study is leading to practical interventions. For example, scientist Azadeh Kushki is developing an anxiety meter “that gives youth a visual prompt to changes in their heart rate that signal they need to do a calming strategy. This helps because kids with autism have difficulty identifying their symptoms of anxiety. It’s truly a collaborative effort.”

Most kids enjoy participating in the POND study, Susan says. “They’re with people who appreciate them and see their uniqueness as an interesting thing, as opposed to something to be fixed. We meet some of the most amazing kids who daily teach me something new.”

The study is funded through the Ontario Brain Institute until 2018. “It’s such a robust, rich source of information,” Susan says. “I hope we’ll be able to follow some of these kids and their families longitudinally.”

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Slip slidin' away

By Louise Kinross

Yikes.

The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter.

Their comments paint a stark picture:

“In the slush and snow my walker seizes up” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work…because it’s cold so the hydraulics don’t work…So even if the bus comes, the ramp doesn’t work. So you wait for the next bus. I have times where I waited for four buses.”

Snow-blocked pathways and sidewalks force participants onto the road. One was hit by a car at an intersection when she had to drive on the road because the sidewalk wasn’t plowed.

Most youth can't wear gloves because it impedes their ability to use their walker or wheelchair—so frostbite is a common problem.

One recounted getting stuck on patches of ice and having to wait to ask someone for assistance or call the police. Another was choked when her coat became caught under a wheel.

These extreme conditions led many youth to fear and avoid going out, which made them feel lonely and isolated.

When they did go out, they had to depend more on parents or others to ensure they were safe, whereas in the summer they could go independently.

Participants suggested strategies to help others with mobility devices cope with winter. These included having equipment more frequently maintained to keep it in top working order; paying more attention to conditions of paths and sidewalks and avoiding problem areas; asking a pedestrian about whether a route was hazardous; giving yourself more time to get somewhere; and putting flags and lights on wheelchairs to improve their visibility. To prevent isolation and depression, some participants kept busy in activities like adapted winter or indoor sports. Girls were less likely to participate in adapted sports than boys.

Because heavy winter coats were hard for youth to put on and limited their movement, they suggested wearing layers with a thinner winter coat. Some wore anti-slip boots.

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs, due to smaller wheels on their devices.

Clinicians must ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful, researchers said. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to leave enough time to assess clients for signs of depression. A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.   

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Acceptance: What does it mean to you?

There is a very cool group called 3E Love Network that promotes acceptance of disability.

Today is their International Day of Acceptance.

The group was founded by siblings Stevie and Annie Hopkins, two young adults with spinal muscular atrophy.

Their message: "tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals, who loves life, and who will not be without a voice in society. You are not living disabled, you are living."

Read Annie Hopkins' powerful story here. Annie grew up facing discrimination. She had a ton of spunk. "In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week," according to the 3E Love website.

Annie created a wheelchair heart symbol to unify people of all abilities and spark conversation that would change attitudes. She and her brother Stevie started a company to spread the message. Unexpectedly, Annie died in 2009 due to a complication from a simple medical procedure. Stevie took the company forward.

To me, acceptance means respect for a person's intrinsic self-worth, their value as a human being, regardless of anything they do.

What does acceptance mean to you?

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BLOOM media roundup

Girl advocate for disabled American Girl doll to write book Kickstarter

Last year Melissa Shang, then 10 (above), got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability. The company hasn't. BOO! So Melissa, who has a form of muscular dystrophy, is moving on to write a book about a middle-schooler with a disability. You can also hear Melissa and her older sister Eva calling for more visibility for girls with disability in the media in this TEDx talk: Why girls with disabilities matter. Rock on sister!

Ode on a stethoscope The New Yorker

How poems and medicine fit together in medical journals. Great quote from a seasoned doctor at the end: 'When you get in the twilight of your career, relationships, connections—with patients, and connections with those who help you care for patients—matter as much as or more than the chart, the medical record, the lab tests,' LaCombe said.

Girl invents Hello Kitty IV backpack for chemo and transfusions The Huffington Post

Kylie Symonds, 11, invents a wearable, portable IV machine for kids receiving chemotherapy or transfusions so they don't have to bother pulling cumbersome IV poles around. 

Disabled girl types with nose, opens online store to sell apples Shanghaiist.com

A young woman in Yuncheng, Shanxi province has sold over 350 kilograms of apples from her village over the Internet, using her nose to type and her chin to manipulate the mouse.

We wouldn't accept actors 'blacking up' so why accept 'cripping up?' The Guardian

'When it comes to race, we believe it is wrong for the story of someone from a minority to be depicted by a member of the dominant group for mass entertainment. But we don’t grant disabled people the same right to self-representation.'

Harsh critics in public spaces New York Times Motherlode blog

Blogger David Perry writes about how parents who take kids with disability out in public face constant judgment and prejudice that is isolating.  

Trapped in his body for 12 years, man breaks free NPR

Martin Pistorius was a healthy 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable' but years later Martin regained the ability to communicate and said he had been aware and understanding.

Teen invents snap-on underwear for people with disabilities The Huffington Post

A girl who had to wear a fixator on her leg which meant she couldn't easily slip her legs into undies designs cool underwear that you put on with snaps.

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Nick knew how to take the pain away

By Louise Kinross

When I first got to know Nick Joachimides (above centre), it was in his role as a nurse educator at Holland Bloorview.

Nick was part of a research study to address a growing body of literature that suggested pain was under-recognized and under-treated in children with disabilities. The study aimed to shift the focus from treating pain in our kids to preventing it.

This was of great personal interest to me because my son had just had a major hip and knee surgery that wasn't successful: the hardware put in his hip had pulled out of the bone, taking a chip with it, he was in unbearable pain, and he had to have the identical surgery a second time to correct it.

I was an emotional wreck when my son came to Holland Bloorview in a body cast following this second surgery.

But I had one huge advantage. Nick worked on the unit my son was on.

Nick was convinced that by proactively treating pain with medication before it spun out of control, it could be kept at bay. He was implementing a number of best practices that included pain assessment tools to track pain; anticipating and treating pain prior to therapy or procedures; making pain management the responsibility of the entire rehab team; using distraction and relaxation techniques; and educating families.

Nick was caring, calm and unflappable.

When my son's cast had to be cut off unexpectedly because his wounds continued to ooze, Nick was part of the team that supported my son in the treatment room pictured (in the photo above he is with a different client).

Children need to feel safe in their hospital rooms, so painful or anxiety-provoking procedures are done in a separate room at Holland Bloorview.

I expected cutting the cast off would be traumatic for my son. I was also concerned that it might result in the hardware pulling out of his hip again. "He can't take another surgery," I remember telling Nick, which was really my way of saying "I can't take another surgery!"

I was astounded when I came to the treatment room and found my son lying on a bed, completely relaxed, grinning. Nick and a number of nurses and child-life specialists were circled around him, as was the orthotist who was cutting off the cast.

Fibre-optic lights were draped over my son, blinking peacefully, and his favourite Star Wars movie played on a large-screen TV above. I hadn't asked for any of these things. Because staff had gotten to know my son, they knew he adored Star Wars. They had taken the time to think about what might soothe him and take his mind off the medical procedure.

There was only one person visibly stressed in the room: me. One of the child-life specialists suggested that it might be better for everyone if I went back to my office and they called me when the procedure was over. Ha ha! She was right.

When the cast was removed they found my son had pressure sores that needed to be treated. Nick is an expert in wound care and he always seemed to be able to change my son's dressings with a minimum of pain.

Something I learned when my son became an inpatient here is that nurses are the heart of the care we provide. They're the ones who are with you and your child for the most amount of time every day and night. They're the ones who problem-solve with you when your child's pain is bad. They're the ones who make handmade heating packs to soothe your child's aches. They're the ones who are there when everyone "leaves" for the weekend. They're the ones who give you a hug when you start to cry. They're the ones who make being in hospital bearable.

Two years ago I got to interview Nick about how he got into children's rehab. I was moved by a story he told about the deep connection he made with one inpatient boy on our complex-continuing care unit. "They want to have fun, they want to be treated like children," he said. "They need people here who can demedicalize the environment." One of the ways he did that was by concocting practical jokes with this boy that they'd play on other nurses. "We'd both laugh when we pulled off a good one," he recalled. 

In the last few years Nick moved out of frontline nursing and worked with people in and out of Holland Bloorview to make it a leader in patient safety and infection control. 

When I heard he was going to a new position at Bridgepoint Active Health Care I was so sad. Holland Bloorview and Nick went together. But then I learned he was returning to clinical care, as an advanced practice practitioner for wound care. I could picture the immense trust he would engender in the patients and families he was going to, the way he would work to take away their pain and put them at ease. And it totally made sense.

"Do you remember a nurse called Nick?" I asked my husband.

"Not really," he said.

"Come on," I said. "He helped Ben with his pressure sores."

"Oh him! Yes, he was very gentle and kind."

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'How poor are they who have not patience'

By Louise Kinross

Patience.

It's a quality that doesn't rank high in our competitive, consuming, instant-gratification culture. We want things, and we want them fast.

Some families reminded me recently of the importance of patience in raising children with disabilities.

The first was Pia Pearce, mother to Kevin Pearce, an American snowboarder expected to win gold at the 2010 Olympics until a crash nearly killed him, severely injuring his brain. Kevin was hospitalized and had to relearn everything—to swallow, walk and talk. He was unable to return to competition. It’s common for parents of children with traumatic brain injury to mourn the child they knew pre-injury.

“I didn’t see any value in going there,” Pia told me in an interview. Because of her experience raising her son David, who has Down syndrome, and two boys with dyslexia, “I had learned, over the course of time, a lot about patience and acceptance. Because I’ve had so much experience with accepting differences, my focus is on acceptance.”

That stuck with me and I wondered how it could apply to my experience raising my son with a rare genetic condition.

Last week I interviewed Joyce Scott, the twin sister of Judith Scott, a world-renowned fibre sculptor who's described in this New York Times piece as a “complex and brilliant artist and person.”

Judith—who had Down syndrome, was deaf and was institutionalized for over 30 years—didn’t find her gift till her mid 40s, when Joyce brought her to San Francisco and became her guardian. Joyce enrolled Judith in Creative Growth, a community art centre for adults with disabilities. At first Judith didn’t show any aptitude or interest, Joyce said. “It’s a place where they don’t teach art, they provide materials and allow people to explore them. Judy was there for about two years and she wasn’t liking drawing or painting or ceramics. We thought ‘Maybe this isn’t the right place for her.’”

One day Judith was sitting at a table where an artist was using textiles and “she took some of the materials—the threads and yarns—and found some sticks and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded,” Joyce recalled. “Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.”

Judith’s work, which combines fibre and found objects like an umbrella, branch, bicycle wheels and plastic tubing, has been shown in museums around the globe. Ten years after her death, “Bound and Unbound” is a 60-piece exhibit at the Brooklyn Museum in New York until the end of March.

Judith’s story made me think about how impatient we typically are—as families and professionals—when exposing children or adults with disabilities to activities or work. How often do we encourage a person to try something like art—on a daily basis, for two years, as Judith was—when the person doesn't show any affinity for it? Rarely. We're more likely to assume the person isn't capable and insist that they move on. I think Judith's story is exceptional because without her unhurried time at Creative Growth, her talent would have remained hidden.

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

I think the key word is respect. Because Joyce respected her sister, she continued to support her participation in the art program even when Judith didn’t appear to be making gains. When you respect someone, you give them time. You give them latitude. You believe they have worth. You value them as they are. 

I saw the benefits of patience in my own life recently. My son has been working at two high-school work placements. He has significant disabilities and a lot of growing and maturing to do. So this has not been without bumps. I reached out by email to the owner of one of the businesses to ask how things were going. 

In his response, the owner began by describing our son as “an awesome individual.” He went on to say that they had seen “slow but real improvements” in our son's work, behaviour, focus and attention. He addressed one of our son's challenges and his need to improve. He finished off by saying that our son was an asset to the team. 

I read this message to my husband and we teared up. We agreed that we had never had a message like this about our son before. Usually the feedback we receive focuses on the negative. And that invariably leads us to question our own weaknesses as parents.

What I took from this business owner's message was that my son was being given time to develop and improve at his work. They were being extraordinarily patient with him. Despite his disabilities, they saw his value. This made my husband and I feel more hopeful about our son and more motivated to support him and stay positive about his experiences.

It made me wonder why we don't talk more about the benefits of patience in parenting kids with disabilities and the intrinsic self-worth of children (distinct from ability). Is it possible that we're missing something in our focus on goals and outcomes and hurrying people along in their development? Are we too quick to judge people incapable? And resign them to the margins? Maybe we could all benefit from more patience.

The photo is of an unnamed sculpture from Judith Scott's Bound and Unbound exhibit at the Brooklyn Museum. Please click on it to see the full image. The headline above is a quote from Shakespeare's Othello. Look for a more in-depth interview with Joyce Scott in the winter issue of BLOOM next month.

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Israeli military opens training to disabled youth

By Louise Kinross

Special in Uniform is a world-first: a four-year training program that prepares youth with disabilities to serve in the Israeli Defence Forces (IDF) alongside their peers. No other nation's military trains people with disabilities for service. A decade ago IDF Lt.-Col Ariel Almog argued it was time to include youth with special needs and began “one by one to take youngsters and train them,” says Yossi Kahana, Special in Uniform co-founder. Today the program, funded by private donors and the Israeli government, works with 200 adults with a variety of intellectual and physical disabilities and plans to expand to military bases across Israel.

BLOOM: What is the purpose of Special in Uniform?

Yossi Kahana:  In Israel, army service is the gateway to successful integration into society and the workforce. The entire population joins what is known as the people’s army at age 18, after Grade 12, for two to three years. So siblings, friends and neighbours go to the army and youth with special needs stay home. They receive a letter saying you're not eligible and you're released from service. A number of years ago the commander Lt.-Col Ariel Almog decided that it's time to include people with special needs because they add great ability and can contribute. We wanted to open the door to them. We did a pilot of 20 men and women and it became an official program and now we're launching it nationally.

BLOOM: Who can participate?

Yossi Kahana: The age range is 18 to 24. They have a variety of physical and mental disabilities. Some have physical challenges and some have autism or Down syndrome. We work with their special-education school so in their last year they begin coming one day and then two days a week to our program. We have an apartment where they're trained to live full-time, first a couple of days a month and then for longer periods of time. Parents of children with special needs tend to protect their children so they don't have the same opportunities to do things on their own—to go to the mall and shop or communicate with the public or learn how to be responsible. They don't know how to act in a public place. We're giving them an education they're not getting in special-ed school or at home. They start as volunteers and along the way most will become [paid] soldiers.

BLOOM: Are there any disabilities you can't accommodate for?

Yossi Kahana: It's how they perform with the disability. They have to have a certain level of communication and understanding and learn how to behave among others and work on their own. They have to be able to function well in the community. Our job is to train them and coach them and push them.

BLOOM: In a video posted online we see participants going to live on the base for a week-long basic training.

Yossi Kahana: That's the last stage of training.

BLOOM: What are some of the jobs they do? In the video some were packaging masks?

Yossi Kahana: Each citizen gets a gas mask and batteries and medicine in a package. So some of them are in charge of putting that together. Others are taking computers that aren't working apart—for parts—or working in the kitchen or office. Each is assigned to a meaningful job and they are coming in each morning and doing their job. There is a program for soldiers with autism working in intelligence. They are analyzing what comes in on satellite maps from different locations and they can find a needle in a haystack. They have a visual ability that is 10 times more accurate than the regular person and much faster.

BLOOM: What kind of support staff do you have to make this possible?

Yossi Kahana: We have therapists, social workers and school special-ed directors, principals and teachers working with us. It's a big team and there's a lot of work behind each person that becomes a soldier.

BLOOM: It sounds very expensive.

Yossi Kahana: At the end of the day it's about funding. Initially we had philanthropists in Israel supporting us, and now we receive some funding from the government. We're trying to educate the government and communities around the world in order to raise more funds.

BLOOM: What changes do you see in participants?

Yossi Kahana: When they're getting the uniform you see the smile and the joy and the self-esteem is rising right away. This is something like magic. Every day on the base they are having so much dignity. They start the program thinking they can't do anything. Their parents have protected them and they didn't get the challenge or chance to go out and try to live on their own. We see an increase in self-esteem and they do what they thought they couldn't do. They are doing a job, they know how to work, what the responsibility is. Just imagine when the family and neighbours see the person come home in uniform. It changes the environment. For the parents there is so much joy and pride.

BLOOM: I just read an article in the Jerusalem Post about a survey that found that 40 per cent of Israelis don't want their child to go to school with a child with disability. It seems there's still quite a bit of stigma there. How do you make the army a welcoming place?

Yossi Kahana: Israel is a young country and there's a lot more work to be done in terms of acceptance and inclusion. But before our people with special needs come, the commander gathers all the soldiers and educates them about these new soldiers: what they need, what the challenge is. We're preparing them. And we see some interesting things. One of our commanders told me that when she has a regular soldier who's a problem—who wants to go home or is not coming in on time—she matches this soldier with one of ours, and she sees an incredible increase in morale. Now that soldier has a responsibility to someone who has a disability and feels ashamed to run home when these guys are trying so hard. Hopefully our soldiers' interactions with soldiers with special needs will lead to more tolerance and acceptance in the real world.

In the short run this program is making our soldiers more sensitive and tolerant to people who are a little different than them. In the long run, we [increase] the value of the army because no army in the world is accepting people with special needs and disabilities. Our soldiers are helping to build this army and they are sharing the same dining room, eating lunch together, and accepting our soldiers with special needs as part of them. It's a big change. We hope that in future every base in the country that has jobs will accept people with special needs. It will be huge.

BLOOM: What difference will Special in Uniform make to these people's futures?

Yossi Kahana: If we look at the big picture, if you serve in the army many doors are open to you. That's true for regular people and it's even more true for people with special needs who have difficulty getting a job in the community and being part of society. For them, the army is a golden gate to the community.

BLOOM: How did you get involved in the program?

Yossi Kahana: I'm the father of a child with special needs. My older son is serving in the army and my younger son, Gershon, who is nine years old, is autistic. My dream is that my younger son will one day join his brother in the army. So I helped to put together the Special in Uniform program. I co-founded the project and created the plan for it and advocate for it.

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Would your kid like to do this?

Wheel Dance is a Canadian non-profit hoping to bring ballroom dancing classes to children with disabilities.

“It’s a great physical workout, it’s a social activity, it’s fun and it’s a great confidence booster,” says Dr. Iris Kulbatski, executive director of Wheel Dance.

The group currently offers subsidized beginner and advanced ballroom classes to adults with disabilities and a standing partner at an accessible studio in York Region. They’re looking for Toronto area dance studios, rehab facilities, schools or community centres to partner with to offer the activity to children.

Children who use wheelchairs can learn to dance with a parent, sibling or volunteer from Wheel Dance.

Iris would love to hear from parents who’d like to get their kids involved. You can e-mail her at wheeldance@outlook.com.

The photo above is taken from the International Paralympic Committee's Wheelchair Dance Sport Facebook page.

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BLOOM media roundup

Vulgar poster campaign sparks Human Rights Tribunal The Toronto Star

Anonymous posters displayed in a Scarborough co-op targeted residents with disabilities. In one case,  a 9-year-old boy with cerebral palsy was described as "a retarded monkey" who "should have been put down when he was born." A group of residents, including the boy's mother, are having their case heard at the Ontario Human Rights Tribunal today.

Song and daughter inspire plans to celebrate people with disabilities The New York Times

Inspired by his daughter, who has Prader-Willi Syndrome, New York jazz pianist Mike LeDonne is organizing an annual disability pride day. The first Disability Pride NYC parade takes place this July.

New #IMREADY campaign pushes for child models with disabilities to be featured in media ABC News

Parent-founded Changing the Face of Beauty is challenging retailers to become part of their #15in2015 campaign by using kids with disabilities in their advertising.

"A living hell" for slaves on remote South Korean island salt farms CBS News

Hundreds of people with disabilities work unpaid 18-hour days on salt farms on remote South Korean islands according to an Associated Press investigation. And although 50 island farm owners and regional job brokers were indicted, no local police or officials have faced punishment, despite multiple interviews showing some knew about the slaves.

An oasis of care for people with intellectual disabilities The New York Times

A sobering story about American parents trying to find health-care for adults with complex medical needs, including intellectual disability. The Lee Specialty Clinic in Louisville, Kentucky is one of the few free-standing facilities designed to provide medical and dental treatment to this population.

Majority of autism increase due to diagnostic changes, finds new study Forbes

Almost two thirds of the increase in autistic Danish children results from how autism is diagnosed and tracked, found a new study in JAMA Pediatrics, lending more support to the idea that the apparent rise in autism rates, or at least most of it, is unlikely to be "real."

Innovative wheelchair technology is helping people stand up The Globe and Mail

An innovative wheelchair design by Chilean physiotherapists helps patients move from a seated to an upright position, allowing them to see the world from a different perspective.

Did we miss a good story? Post a link in the comments! Thanks, Louise

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Looking up

A year-and-a-half ago Sue Robins (with son Aaron) wrote what's become our most read post: The invisible mom. It was about how moms of kids with disabilities can face the same social exclusion their kids face. Now Sue gives us an update on the steps she's taking to make her family be seen and understood at their local school. Thanks Sue! Louise

By Sue Robins

When I wrote The invisible mom last year, it hit a sensitive nerve with parents. Many wrote to say they too had felt the sting of being left out of parent circles at their child's school. They too felt like invisible moms.

There's still a gaggle of moms who stand in the playground at my son Aaron's school, and I still haven’t been welcomed into their circle. 

I've thought a lot about why I've been left out, and how I may contribute to my own invisibility. For example, in the past I always walked through this parent group with my head down. As a first step, I vowed to look up to see if I could make eye contact with anyone and initiate a smile. So far I haven't connected with any of the moms, which is disheartening.

However, I've realized that if I want change to happen, I have to lead it myself. Here are six things I've been working on in the past year to make myself more visible at my son's school.

1. I presented our story

I was fortunate to be asked to speak last March at a Parent Partnership Group at our school on the topic of What Inclusion Means to Me. It was the first time that I stood up to speak to other parents and teachers about how it feels to have a child with differences. I tried to be honest and authentic. I public speak for a living, but still, I was SO nervous.

Not everybody liked what I had to say. I had a heckler at the back, a mom who felt that kids like mine took away from her kids' time with their teachers. That was challenging. But at least I had the opportunity to share my story with a larger group. I started to become more visible, at least to the small audience at the meeting.

2. I reached out to other parents who had kids with differences

The Assistant Principal who asked me to speak on inclusion started to informally introduce me in the hallway to other moms who have kids with differences. My son Aaron is the only kid in the school who has a visible disability. In a setting of 900 children, it's impossible to identify who's the parent of a kid with autism or an invisible disability without some assistance. Turns out there are 27 students who have support in the classroom. I wasn’t alone!

3. We began a Family Inclusion Group

I discovered that I wasn’t the only one struggling with IPPs and calls from the school! Five of us moms started talking to each other in the playground about starting an inclusion group in partnership with the school. This would be a group of families with kids with diverse learning needs and anybody else interested in inclusion and building a compassionate school community. Some people in our disability community were not supportive of our inclusion group, and accused me of starting a segregated group, but I ignored them and soldiered on. We had to start somewhere.

We started to meet for coffee at our local recreation centre. We met with the school's new Assistant Principal to plan a formal meeting. We only had four parents attend the first meeting, but our school trustee showed up! This was exciting to us. We wrote a Terms of Reference, and worked hard to partner with the school. As an added bonus, a mom joined our planning group who has typically developing kids, but who really believes in supporting us. That almost made me weep. We are not alone, even in our wider community. People do care about our kids. We just have to be given opportunities to find them.

4. We had regular coffee meetings

This fall our little group regularly met for coffee to vent, support each other, and come up with constructive suggestions to improve things at our school. We grew close, and survived a rocky meeting with the school about cuts to the educational assistant budget. We’ve had a setback, relationship-wise, with the school, but we aren’t giving up.

5. We started representing at Parent Council

We committed to showing up at every Parent Council meeting. Even better, we have a standing agenda item to give an update about what we're doing. The first time we had to present to this bigger parent group I was quaking in my boots. What was interesting is that the other parents said they wanted to know how to talk to their children about our kids and differences. They said they didn't know where to start. At the last meeting we shared an essay I wrote with some tips: How to be part of Aaron’s village. I haven't noticed a difference in how parents interact with me. However, last month as Aaron was walking to school one of the Parent Council moms shouted out to him: "HI AARON."  This seemingly minor happening is a major breakthrough for us.

6. I volunteered for more field trips and Hot Lunch

If I want other parents to accept Aaron and me, I have to do my part to be more visible. So I’ve made an effort to volunteer more at the school. That way at least the kids in his class get to know me as Aaron’s mom. I’m a true introvert, and volunteering for Hot Lunch with the other moms is a BIG stretch for me, but my first shift is in January. Wish me luck.

In December I met some of the moms from our inclusion group at a local fancy restaurant for a holiday lunch. We talked about things other than school, like where we went to university, our Christmas traditions, our other kids. We are getting to know each other as people, too, not just as "special needs" moms. At the end, we all gave each other a hug goodbye.

I wish that the world was accepting of my son and our family, but that’s not our reality. I know from my paid work life that good change management strategy means that you celebrate the 20 per cent of people who get it (our inclusion group), and focus on the 60 per cent who are neutral or not engaged (like our Parent Council). The other 20 per cent, who don’t get us, like the heckler at my presentation? Forget about them. They aren’t worth your time or energy (Believe me, this is a tough lesson to learn, and I certainly don’t practise this philosophy every day).

Because of our inclusion group, us moms are not alone. We greet each other in the hall. We no longer stand separately in the playground after school. We have found each other. We vow not to exclude others as they have excluded us. We are open to anybody who wants to join us. We listen to each other, root for each other, and our kids are slowly getting to know each other too. This is awesome. Aaron now knows the names of the inclusion moms' kids, and they greet each other and high-five in the hall. He’s building his own community too.

Even when things aren’t okay, they will be okay because we have found each other. Here’s to building safe spaces, like BLOOM, where we can support each other and share information. I truly believe in my heart that together we are stronger.

Please share any strategies here that you've tried to promote your family's inclusion at your school.

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