Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

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Payal sees children's rehab from a newcomer perspective

By Louise Kinross

Seven years ago, Payal Khazanchi and her family immigrated to Canada from Oman. At age five, Payal’s daughter Aakanksha was diagnosed with global developmental delay. Payal assumed they’d be connected with rehab services, and be able to meet other families like theirs.

But it didn’t happen.

“Because education and health are government-supported, I presumed if there was an issue with my daughter, the system would tell me where to go,” Payal says. “But instead of one single, straightforward path, the system is so fragmented that there are a million paths to reach what you need.”

It took Payal years to find Holland Bloorview, and it was only due to a chance encounter at a baking class when an acquaintance mentioned the hospital. Before that, Payal had quit her job to take care of Aakanksha, who is now 12. She spent hours on public transit travelling to multiple spots all over the city for services like physio, dentistry, orthotics and optometry.

Payal grew up in India before moving to Oman. She says Canadian health providers need to understand that disability is stigmatized in both countries, and in other areas in the region. “Newcomers come with the mindset that disability is a taboo, and you shouldn't talk about it. They may be concerned that their child's disability will affect their legal status, such as permanent residency or Canadian citizenship. We didn’t have any family here and we didn’t know anyone in a similar situation.” 

No one helped Payal navigate the system, so she had to “start from scratch,” searching for resources online.

“For the first three years, I didn’t know there was federal and provincial funding for families like ours.” For example, Payal’s daughter wears glasses that cost $750 a pair, but no one explained that a part of it could be covered under these programs.

Once Aakanksha was seen by a developmental pediatrician at Holland Bloorview, she began receiving therapies and other services under one roof. “It saves me a lot of time running around as a parent. Holland Bloorview is like a one-stop for resources.”

Payal says Holland Bloorview can better support newcomers by identifying them early on, and connecting them with a social worker and a family leader, a parent in a similar situation who volunteers at the hospital.

“The social worker has the knowledge, awareness and resources to share with someone new. I only got a social worker after six years in the country. She showed me about 12 forms. In three years of searching online, I had found eight, and filled them in myself. Getting this information, and filling the paperwork out, is a challenge for newcomers. We also need respite, and we don’t know where to go or who to trust.”

Payal says meeting Jean Hammond and Beth Dangerfield, parents who run our family leadership program, was life-changing. “It was wonderful to know that I’m not the only one struggling, and that I could talk with someone who would understand if I was overwhelmed or anxious. If I had been connected with a family leader earlier on, I wouldn’t have felt so lonely.”

Now Payal is giving back as a family leader herself. “I want to be a voice for immigrants who were like me,” she says. “I want to be someone they can talk to, who can share what I missed out on when I was first here. I want them to feel that they're accepted and can gather more information—and that they're not the only one.”

She’s doing a master’s in adult education and community development at the Ontario Institute for Studies in Education at the University of Toronto. “I'd like to help other immigrants come out of their shell and help their child feel comfortable in their own skin. I'd like to help newcomers navigate the system and share the knowledge I've gained over the years. If I can encourage someone to access supports, and change their mindset, based on my lived experience, I will have contributed my bit.” 

Payal recently interviewed eight Holland Bloorview parents to get their feedback on a research idea she has where one child with a special talent will mentor another. “When we go to the hospital or school, the focus is on the child’s disability and what’s wrong. I want to change the lens from what’s wrong to what’s strong? If a child has some innate abilities and strengths, let’s focus on those. The parents I spoke with said they believe their children have abilities that can be built upon. They’d like to see their child sharing their skills and feeling good about themselves, as opposed to always being at the receiving end of a support person or therapist or care worker. They feel their children can not only receive learning, but impart it as well.”

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Refugee claimant hits roadblocks getting disabled child's care

By Louise Kinross

I'm delighted to introduce the latest in our A Family Like Mine video series.

Meet Ola Atanda and her three kids: Bolu, 15, Abby, 7, and Rahmat Beverly, 19 months, who has cerebral palsy. The family, originally from Nigeria, has been living in a Toronto shelter for almost two years as Ola seeks refugee status. Ola is attending high school with hopes of going on to university to become a social worker.

Ola says her greatest challenge is getting Rahmat’s health needs met. “I’m having great issues with my Ontario Works case worker,” she says. “She never wants to approve any of her medical needs.” For example, she wouldn’t approve Rahmat’s feeding machine. “She’s a sick baby, a disabled child diagnosed with about six things…what do you want to see that could make her…eligible?”

Ola says her two boys get good medical care with their interim health card, which covers refugees without status. “I think the reason why I’m having this problem is because she’s a child with special needs.”

Check out all of our A Family Like Mine videos.

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New parent sleeper chairs make hospital stays more restful

Holland Bloorview family leader Lies Ferriman was one of a group of parents who tested out the chairs, which pull into beds, at the factory. She remembers sleeping on a narrow cot with pointy springs when her son was hospitalized at our old Bloorview site.

By Louise Kinross

Seventy-five new sleeper chairs for parents staying at their child’s bedside at Holland Bloorview are being purchased thanks to dollars raised by our recent Capes for Kids campaign and the Leaside Block Party.

The first 50 chairs, at a cost of over $80,000, are on site, and the remaining 25 will be ordered in April.

The chairs, which pull out into beds, were factory tested by parents before a selection was made.

“I couldn’t get comfortable when I slept on the cots at the old Bloorview site,” says Lies Ferriman, a parent whose son was hospitalized with a brain injury. “And the more recent red chairs we had were just as narrow.”

There was also a fold in the red chairs that jabbed into your back. “It was awful,” Lies says. “When you aren’t able to sleep in this situation, it creates such a weariness.” Over the years, parent complaints about sleepless nights piled up.

The new sleeper chairs are much wider and longer than the old ones, with good back support and softer material. “Every patient bed will have one,” said Irene Simpson, operations manager for two of our hospital units.

The grant submission for the new chairs was written by family leader Cheryl Peters and Aman Sium, director of Client and Family Integrated Care. It included an appendix with quotes from parents about how lack of sleep made it difficult for them to cope. “The emotional fatigue…can be crippling, and then add the physical fatigue from a poor night’s sleep,” wrote one. “If more comfortable sleeper beds were available, better rested caregivers might lead to less stress on the unit. Fatigue can lead to poor listening and decision-making skills.”

Holland Bloorview Kids Rehabilitation Foundation is still fundraising for some of the beds.

In addition, Capital One purchased relaxation kits for each family, and worked with our foundation to assemble them.

The kits include a pillow, sheet set, eye mask, ear plugs and other items designed to make parents comfortable.

Much sweeter dreams are on the way.

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Time for a parenting reality check

By Louise Kinross

It’s so easy to look from the outside of someone’s life and make assumptions about how they’re doing. In the last 24 hours, I read a couple of posts that showed me how wrong we can be. 

When we ask someone how they’re doing, do we really want to hear the answer? Do we make room for people to share candidly? Or do we just want the sanitized ‘fine,’ so we can go on our merry way?

Susan Senator and Maya Wechsler are what I think of as super parents. People who have literally moved the world to give their kids fabulous lives. Trailblazers.

But yesterday, they were both waving distress flags.

Susan is a Boston author who’s written a number of books on raising her son Nat, who has autism and doesn’t speak. The most recent was Autism Adulthood: Insights and Creative Strategies For a Fulfilling Life. She’s also written for BLOOM.

I always looked to Susan with envy at her ability to work with Nat and her family to come up with creative ways for Nat to live in the community with support. There had been some horrific bumps. But the last time I checked in, it seemed he was in a great living arrangement and doing cool things like playing in a band.

So it was a shock to hear yesterday that Nat had returned home, and to read this Facebook post:

“No matter how hard I work to help make this world a better place, to actually give a sh%t about people like Nat, I get obstacles thrown in my path, I get fight after fight for just basic inclusion and decent treatment of him. I want to f%cking just give up, I am too old for this, and not getting any younger.”

Ironically, The Washington Post also ran a piece called People don’t want to hear the ‘ugly details’ of our struggle to raise and educate our autistic son. That piece is behind a paywall, so you can find it here on the author’s blog.

I was surprised to realize it was written by a mom I'd interviewed in BLOOM: Green acres is the place for me. Maya and her husband moved their family from Washington, D.C. to a farm in Virginia and opened A Farm Less Ordinary, a business selling vegetables that employs adults with intellectual disabilities. They wanted a better life for their son with autism.

In a post from earlier this year, Maya wrote about her experience connecting online with people who were celebrating the 15th reunion of her graduate university program:

“I found myself staring at the conversation, wondering exactly what the hell to say to these people. 'Do I tell them that we are broke? That paying for my son’s therapies and child-care has ruined us, financially, so a trip to Chicago isn’t really in the budget at the moment?...Or do I tell them that I really don’t want to sit around and have polite conversation about their PhDs and growing resumes...?” 

I am in awe of what Maya and her husband have accomplished with their farm. When I interviewed her, I told her I wished I had the courage to do something like that for my son. I still do.

Back to Maya's piece: “No one wants to hear the truth, when they casually ask how I’m doing, or how my holidays were. They wouldn’t know what to do with the truth, however much I sanitize it for their comfort and digestion. People want to hear about progress.”

So I post this story here as a pause. Let's take a pause and acknowledge the lengths our families go to to try to make the world a livable place for their child. Let's recognize the immense challenges and barriers, that stubbornly persist.

Because if parents like Susan and Maya find themselves at wits' end, we need to sit up, pay attention, and extend compassion, to ourselves and to every family walking a similar path.

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My daughter is not an animal at the zoo

By Christina Herbers

We saw pandas! We saw lemurs! We saw bears and zebras and hippos.

We were just a family visiting the zoo.

And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring!

Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo.

On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not being afraid of us. Thank you for seeing us. Thank you for holding a door open for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us! 

Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers?

How can your child know the answer to “what is that face?” if you don't ask me? If you ask, I will tell you about the car accident we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her brain injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a brain injury before she was born.

She has always been this way. 

She is also mellow and calm and quiet.

Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us.

Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two people who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same have their own individual personalities.

Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers.

Let’s work on seeing each other for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life?

Share your thoughts below. I’d love to hear from you!

Did you like this story? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu: He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu: It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu: In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu: We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu: I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu: I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu: No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu: Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu: Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.

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With a little help from my friends

By Louise Kinross

Living in hospital for months of rehab after surgery can be hard for a kid and their parents.

Kim Hoben (above left) of Whitby says the kindness of neighbours, friends and family has made her stay at Holland Bloorview with daughter Riley, 8 (right), so much brighter. Riley, who has cerebral palsy, had surgery on her hips, femur and hamstrings and has been here for three weeks.

It started when Kim's neighbours collected hundreds of dollars from people in the community and her son's hockey team to cover gas and parking costs for the trips back and forth from the hospital. 

Then the family received a box with a package for Riley to open every single day she's in hospital. The bags are dated, and a great way to start the morning, Kim says. "The presents are crayons, a pencil case, books, a blanket, slippers, nail polish, and a brush. Things that keep her busy and are so special and thoughtful."

The first weekend the family came home, they were met by friends lining the driveway with balloons and a 'Welcome home girls!' sign. 

Help has also come in the way of friends offering to stay overnight at hospital with Riley, or spend time with her during the day. "On Monday night a neighbour slept over and stayed all day Tuesday. She took a vacation day to do it. My son was with my sister, so my husband and I went out to a restaurant. A teacher came one day so I could go home and watch my son play baseball."

Kim keeps friends updated on Riley's progress on Facebook and in a messenger group. 

"The days are long here, and it's hard to be here 24-7," Kim says. "The support we've had is incredible."

Kim notes that her community has come up with specific ways to help, without the family asking for it.

Parents of children with disabilities often find that people say "Call me if there's something I can do," but don't take action.

When neighbours visit, Kim says, they bring food and snacks.

Riley says her favourite activities at Holland Bloorview are "physio and rec." 

"The recreation programs here are amazing," Kim says. "Three times a day, they may do crafts, go to the gym, bake or play games. Riley likes to go on her own and do her thing, so it's also a break for me. Riley loves the student volunteers who work with the program."

As of yesterday, Riley walked with a cane for the first time. "Now she's swimming, which is great for her legs," Kim says. "She's like a fish in there."

Want to support a child and parent in hospital? Consider all of the practical ways the Hoben family has received support and take action!

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Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler: We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler: Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler: He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler: We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler: When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler: We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler: We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week—Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler: They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler: Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler: As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler: I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler: Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.

This is a fabulous Upworthy video about the family.

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Before you hit share, did you ask your kid?

By Louise Kinross

A week ago Rebecca Cokely wrote an interesting piece for Rewire.News called On parenting and consent: When sharing isn't caring. "While nondisabled parents generally raise nondisabled kids to not let strangers touch their bodies, or not to talk about their private matters to people in public, disabled kids are taught to share everything," she writes.

Rebecca is the senior fellow for disability policy at the American Center for Progress. You may remember her, and her family, from this fabulous CNN video: A disabled, biracial (and totally normal) American family. 

In her recent article, she says she was planning to write a parenting piece about bullying by drawing on her son's experience. Then she asked him if that was okay, and he said no. "He was right," she writes. "It's not my story to tell."

Rebecca notes that the medical world often strips children of autonomy and privacy. For example, she writes that as a hospitalized child, she was given the message that educating medical students came before her own need to assert personal boundaries.

Rebecca suggests parents may be putting their own needs above what's best for a child when they post about a child's disability online. "When it comes to consent and disability, the internet is full of families of disabled people sharing stories, asking for tricks of the trade, and just plain venting. These exchanges walk the line from being informative to being exploitative. For every thoughtful question about what car seat works best, there are five posts of parents sharing photos of their children in various states of undress asking if an impairment or ailment 'looks normal.'"

What do you think?

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My jar of awesome

By Louise Kinross

Lots of amazing things happen in my son's life, things that fill my heart with gratitude. But too often those memories get lost amid the challenges and worries of raising an adult son with disabilities.

Now I'm going to write those great things down, and put them in a glass jar, so I don't forget them.

The idea came from Sazini Nzula, a Montreal mother of two boys with autism and the author of Beautiful Inside and Out: What You Ought to Know About Autism. I interviewed her a couple of weeks ago.

Sazini told me about the 'jars of awesome' she keeps for her sons. They decorate two large glass jars. Then when her kids do something wonderful or have a great experience, she writes it down on a piece of sticky paper and puts the paper in the jar. She writes something each evening and watches the jars fill up. "My plan is that if we go through a really challenging time during the year, I will pull them out to read," Sazini says. "And certainly at the end of the year, we will read them to remember what happened." 

Here are two memories for my son's jar.

A week ago, my son's worker sent me the photo above. My son volunteers twice a week by cleaning at Variety Village. He also takes personal training with a coach there. The personal training helps keep him fit at a time when he's coping with a severely curved spine.

"I went to go get Ben for lunch and I found him walking on the treadmill," the worker wrote. "He was increasing the speed by himself. I snapped a pic before he realized I was there."

You'll notice that he set his broom and dustpan beside the treadmill.

What was amazing was that Ben decided to get on the treadmill and exercise himself. Usually he has a personal trainer with him. Due to his physical disability he has issues with balance and coordination, so the trainer usually starts the treadmill and changes the speed.

"On our way to lunch, he stopped at a couple of machines and did some arm workouts," his worker wrote. Again, he's used to doing the machines with his trainer, but now he felt comfortable enough to do them himself.

Working out on his own is the first note that will go in my jar. 

The second note is about when Ben took his speech app on an iPad with him to a L'Arche arts program he attends. 

Ben has always resisted using his speech app. However, in the last few weeks he started using it to tell me which animal he wanted to paint. As a result of attending the arts program at L'Arche, Ben now enjoys drawing animals and then painting them. What's interesting is that because of the speech app, Ben can more easily tell me which animals he wants, and they are always somewhat unusual ones. He'll choose the Gibbon ape, or an opossum or a camel.

Last week Ben agreed to take the speech app to L'Arche, but I was doubtful he would use it. 

When my husband picked him up, the teachers were excited to say that Ben had used the app to suggest the group draw a scorpion. And then Ben drew a really cool one. Because he doesn't have a signing worker with him in this program, he's had limited ability to express himself, and people probably don't have a sense of who he is inside. Choosing the scorpion was something very specific and personal.

So those two happenings are the first I'll be dropping in my jar of awesome. They may be small things to other people, but to us they are huge. 

Let me know if you decide to create your own jar.

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A son shows his family the way home in Love, Hope and Autism

By Louise Kinross

Robert Fresco is a professional filmmaker, so when his twins Fraser and Hallee were born, it was natural that he’d turn the camera on them. His exquisite home movies are the backbone of Love, Hope and Autism, a CBC Docs POV piece. The film covers the family's idyllic early days, the unravelling of Robert's marriage to Shannon Wray when Fraser is diagnosed with autism, and how the family regroups to co-parent with the addition of Shannon's new partner Tim.

'Hope' is in part a reference to Hope, B.C., the town, surrounded by mountains, rivers and lakes, where the kids lived with Robert for a couple of years. The film begins shortly after the twins’ birth in Ontario and culminates with their 21st birthday. BLOOM interviewed Shannon about what she hopes viewers take away.

BLOOM: I felt so much emotion watching this film. I pulled it up thinking I’d watch for five minutes, and I couldn’t stop. What was it like for you to watch the film?

Shannon Wray: It really evoked a lot of emotion around when Hallee and Fraser were little for me. Seeing the magic of movies, that slow-motion piece of Fraser staring at the farm, it really took me back to that moment of ‘wait, something is not right,’ and that first inkling of fear. On a certain level I wanted to say ‘no, we’re going to freeze frame here and take a different path.’ I had really profound feelings watching Fraser become autistic in the film.

BLOOM: Was it a difficult decision to make the film?

Shannon Wray: The really difficult parts of the film for me were when Fraser was lost on the mountain and his accident last summer. I had pictures in my mind of what that might have been like, but I wasn’t there, and I didn’t see it at the time. To be put back in that situation in such a visceral way was very difficult.

BLOOM: Yes, it’s unusual that you would have footage of Fraser in Emergency, but as Hallee noted, the camera was almost like a pair of glasses to Robert.

Shannon Wray: (Laughs). Until the nurse told him to turn it off.

We screened the film with Fraser recently and his responses were really interesting. He’s used to seeing footage of himself when he was a kid, but when I became emotional about his diagnosis in the film, he became very agitated and started saying ‘It’s okay, it’s okay.’ When Robert got emotional, he had the same response. He didn’t want us to be that upset.

When he saw the first frames of the waterfall where he got lost, he said ‘That’s dangerous, I don’t want to go there.’ We’ve never known where he was or what he thought, because he’s never been able to communicate it to us. He also said ‘It was so dark and I was very scared.’ When the first shot of the stretcher appeared he got up and left the room.

He came back and at the end of the film he said ‘My family all love each other.’

BLOOM: That really struck me watching the film. That the family is reconfigured, but there is still so much love. The scenes where Hallee is interviewed are very candid. Did she have any hesitation about participating?

Shannon Wray: She did a bit, but it was really interesting. After the years she spent in Hope with her dad, she became very emotionally closed off, and it was a long journey for me to get her to open up again. As we were approaching the film interviews, she said ‘They’re going to rip me open, and I think it’s time.’ She’s a very thoughtful girl. She knew she was sort of frozen up inside. and this is what it would take to get over it.

BLOOM: What do you hope viewers take from the film?

Shannon Wray: Robert and Tim and I have parented together as a pod for many years—across borders and across boundaries. Through shattered relationships, we’ve taken the shards of our experiences and put them together into something unique and loving. That’s what I wanted people to come away from the film with. That even if primary relationships can’t be sustained through the stresses of living with a differently abled child, there’s still a way to put a family together out of all of that.

The other narrative that isn’t talked about enough is how much of the oxygen was sucked out of the room for Hallee, for the sibling.

BLOOM: Were you aware of how left out Hallee felt when your kids were living with Robert in Hope?

Shannon Wray: Hallee and Fraser were the same age and quite interdependent, so on one level, because they’re twins, we always had this feeling that all they needed was each other. Something the film didn’t explore was that one of the reasons I wasn’t there in Hope was that I was taking care of my sister, who was dying of terminal cancer. I knew Hallee really needed me, but I had made a commitment to be with my sister till she died.

BLOOM: Can you describe Robert’s relationship with Fraser?

Shannon Wray: Because Fraser couldn’t latch and breast feed productively, and had really bad digestive issues, the doctors told us to get him on a bottle. As soon as he went on the bottle, Robert became his primary nurturer, because I was breastfeeding Hallee.

So Robert would sit and feed Fraser, and Fraser became more bonded with Robert, and they continued on with that bond. Then, as Fraser grew, Robert became incredibly fascinated by him because Fraser was very different. He followed him more with the camera than Hallee. What we realize now is that he recognized some aspect of himself in Fraser, too.

BLOOM: Yes, I remember one part in the film when Robert says he thinks he’s on the spectrum.

Shannon Wray: Not having to talk and be emotionally engaged at a deep level with Fraser was very freeing for Robert. He and Fraser just loved being in one another’s presence and doing things. They’d go on bike rides or canoeing. Fraser feels so free when he’s riding a bike. And he loves the quiet of the paddling in the canoe. From a sensory level it’s very still.

BLOOM: There’s a part in the film where you’re living away from the family and your young daughter calls and says her dad isn’t around and she doesn’t know where he is. Was Robert just absent-minded, or was he having other issues?

Shannon Wray: This is where a diagnosis of Asperger’s would make a lot of sense in our lives. Robert would get an obsession of some sort. That time he had seen an ad for a car he was interested in on Vancouver Island, and he left the kids and went to look at the car. It took him a few days to figure that out, during which time the kids were at home with no ability to cope for themselves.

BLOOM: Looking back, is there any advice you’d give parents about the impact of a child’s autism, or other disability, on a marriage?

Shannon Wray: When Fraser was diagnosed it felt to me like that was the time for us to really pull together, dig in and figure out what we needed to do to help Fraser and Hallee.

But Robert went into ‘Oh well, Fraser is Fraser and that’s fine. It’s all going to be okay.’ I went in to research overdrive—where do we find services and what do we do? I was trying to form a strategy about how we would get through this, and I felt very much alone.

BLOOM: I think that's very common, that people cope with a diagnosis in really different ways. I know in our family, my husband always felt I was over-reacting about things, and I always felt he was under-reacting.

Shannon Wray: Yes, one parent becomes the over-functioning one, and, as a result, the other becomes the under-functioning. They can’t figure out where to jump in. Instead of making room for Robert, I was like ‘I’m going 90 miles an hour this way, if you can keep up, hang on.’

BLOOM: How did you manage to stay so connected as a family after you and Robert separated?

Shannon Wray: In most cases it doesn’t work out that way, because so much anger and resentment builds up. One of the things I didn’t want was for my children to experience a lot of conflict between their parents. It wasn’t avoidance—I didn’t just swallow my feelings and shut down. I worked very hard to be a friend to Robert, and he worked very hard to honour that friendship, too. And when Tim came into our lives he tried to find his way into the family very gently and was very respectful.

BLOOM: Where is Fraser now?

Shannon Wray: He’s with us in Southern California in a tiny mountain village where Tim and I both grew up. He goes to school in the town at the bottom of the mountain. He’s 21 and finishes school in June.

BLOOM: Are there any program options for him after school?

Shannon Wray: No. The way that people with disabilities are managed in California is through regional centres, and the one we’re associated with is where the San Bernardino massacre happened. They manage almost 35,000 cases, and the programs are overwhelmed and underfunded. If we stay where we are, we’ll be on waiting lists, which is what happened when Fraser was little. We’re probably going to need to move to another state. If we aren’t able to commit to a job skills training program, we’re probably going to have to try to fund some sort of co-op program with other parents ourselves.

BLOOM: It’s incredible what falls on families. I know some parents are able to create businesses for their adult kids, and they devote their lives to the business. But not everyone is able to do that, for many reasons.

Shannon Wray: I know several parents who took out loans to set up a coffee shop and bakery. Their children were involved in baking, serving coffee and making and selling crafts. It was very creative. But when the parents got into their '70s, they burned out. They couldn’t do it anymore, and they couldn’t find younger people who had the desire and will to make it sustainable. There is an endpoint.

BLOOM: I understand that Hallee has agreed to be Fraser’s caregiver in the distant future. How did Hallee come to that understanding?

Shannon Wray: Hallee has always understood that she will ultimately be Fraser's caregiver, eventually. That's her choice, it's not something that we've told her she has to do. In fact, we've consistently told her that we will do everything we can to ensure that she has her own life, without Fraser, for as long as possible. The only promise I have asked of her is that she will do everything she can to keep Fraser from being in an institutional setting. Hallee was about 17 when she told us that she would be responsible for her brother.

Canadians can watch the entire film Love, Hope and Autism on CBC Docs POV.

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'Being a black male is...a safety issue over and above autism'

By Louise Kinross

Many of you know Amy Ma, who is chair of the family advisory council at Montreal Children’s Hospital.

Recently, Amy told me she'd heard a parent speak at a Black History Month event about her fears for her sons, who are black and have autism, and the racism and ableism they will face.

That parent is Sazini Nzula, and she lives in Montreal. Sazini has a PhD in medical microbiology and worked for years as a scientist. Sazini has two sons—Ethan, 11, and Jayden, 7. After Ethan was diagnosed with autism, Sazini trained in Qigong Sensory Treatment, a type of evidence-based massage that helps reduce sensory issues in children with autism. “At the time, we had to wait two years to get an autism diagnosis in Montreal, and another two years to get government help,” Sazini says. “This was a method that parents could use by themselves while they waited.” While teaching parents, Sazini was inundated with questions about other aspects of parenting children with autism. She now provides personal coaching to parents. Her book Beautiful Inside and Out: What You Ought to Know about Autism was just released. We spoke about Sazini's experiences with stigma related to race and disability.

BLOOM: Can you describe how Ethan and Jayden are affected by autism?

Sazini Nzula: Ethan still has language delays and only really began speaking when he was about nine. Before that he could say words, but now he actually talks. He has huge sensory challenges, which are better than before, and trouble with self-regulation. He has issues with behaviour and last year at school was horrible for him. This year is going well.

Jayden has challenges focusing and staying on task. He sometimes needs to wear noise-reducing headphones. Jayden also struggles with social interaction.

BLOOM: What has your experience been with stigma related to disability and race?

Sazini Nzula: There’s stigma from the black community, and then there’s stigma in general.

BLOOM: How are they different?

Sazini Nzula: In the black community it’s about having an invisible disability to do with the mind. I’m African, and it doesn’t matter how educated people are, there's still a tie to traditional African beliefs about witchcraft, because it’s scary and they can’t see it, so they don’t understand it. When it’s a physical disability that you can see, they can process that better. But if the mind is different in some way, it must be because of an evil omen.

BLOOM: I’m recalling now a story we did with a Nigerian mother who explained that disability is viewed as a taboo there, as something evil that brings shame on a family and is caused by the parents. Do you find that even when Africans have been Westernized, that some of these traditional beliefs are still deeply embedded?

Sazini Nzula: Absolutely. When Ethan was two I met a man who was educated in the medical field, and he told me he hadn’t told his brother that his child had autism, and the child was nine. I did some research and learned that in Nigeria and Kenya, surveys of doctors, special education teachers and social workers found these traditional beliefs about disability are still there. The stigma of disability is also a huge problem in Japan and South Korea.

BLOOM: I remember a parent here who explained that when her child was born with disability, for the first year, they were unable to tell anyone in her husband’s family, because of how disability was perceived in his community. So they had to make intricate excuses to prevent that side of the family from meeting the baby in person.

Sazini Nzula: In the part of Montreal that I live in, there aren’t that many black people. I remember meeting a Haitian social worker at a cultural event, and she told me that families were happy to speak with her about their children with autism, but they didn’t want other families in the community to know. So they wouldn’t come to events for families.

BLOOM: How do you deal with the stigma of disability in the black community?

Sazini Nzula: I chose not to let it affect me. I chose to tell everyone that my children have autism. I don’t have to hide it and there’s nothing to be ashamed of, in the same way that I wouldn’t be ashamed if my sons had diabetes.

What impacts me is stigma in the general community. For example, one time we were in a supermarket and my older son got separated from us. He can’t speak French and we live in a francophone province, so he pushed past someone to come and join me, and this woman went on and on about how he’d been badly raised, and how in this country we teach our kids manners. But my kids were born here. Had my son been a white kid, she probably would have said something similar but not ‘in this country.’

As my son gets older and taller, I started to be afraid of being outside. When I was at the Black History Month event, I talked about how we came home one night at 5:30, and it was getting dark. My son was having a hard time and he was running down our street. He ran past the two neighbours I know very well, who understand his issues.

My first thought was what if someone calls the police, and says ‘there’s this black kid in the dark running down the street.’ We have a police station within walking distance. I thought if the police got to him before me, there was a chance that things would not have gone well. Being a black male is definitely a safety issue over and above having autism.

BLOOM: We’ve certainly seen stories of autistic youth or adults who are assumed by police to be doing something illegal, because they won’t comply with what the police ask, or they have certain behaviours, or they aren’t able to explain their situation.

Sazini Nzula: That happens everywhere, whatever the race of the person. What I see as an extra factor is my black child who looks out of place in our neighbourhood. He might not be able to comply with the police commands, or, because the police speak in French, he might not understand. Even if he is spoken to in English, he might not be able to process it. Now that’s my big fear.

BLOOM: I understand you have tried to develop a relationship with the police?

Sazini Nzula: I’ve been taking my kids to the local police station since my son was four. My idea was to get my kids used to seeing the police as their friends, and to develop a relationship with the community relations officer, so that if anything happened in our neighbourhood, they would be the first to respond.

I called and explained I had a kid with autism and was wondering if I could drop by. I said I was teaching my son that police are safe people they can approach. Our experiences were good. What I’d love to do in future is go and do an actual presentation.

BLOOM: What advice would you give other parents raising black children with autism?

Sazini Nzula: My biggest fear is involvement with the law. We have to develop an understanding with law enforcement to make sure our kids don’t get hurt and make sure our kids are understood.

I have a nephew who is able-bodied and well functioning, and I’ve seen situations where he’s not treated well by police, and he’s done nothing. When I put the disability on top of being a tall, strapping, black male, we really have to be aware and be vigilant and empower our kids.

BLOOM: Do you talk to your sons about racism?

Sazini Nzula: With my older son, he’s not at a level of social awareness where he would notice if it happened. So for now I tell him if he feels he’s in trouble or not safe, to call mommy or to call the police. We’ve talked about calling 911 in an emergency, and my kids are good with numbers and use their cell phones.

In Grade 1, a student told my younger son ‘brown people are dirty and stupid.’ So I did talk to him about race. In his school, which is a public school, there aren’t that many people who aren’t white.

BLOOM: I loved one of your blogs where you talked about having a jar that you regularly drop memories of awesome things your kids do into. Can you explain?

Sazini Nzula: It’s a way to focus on the good things. Last year, when I think of my older son’s school year, I remember all of the calls from the psychologist, all of the meetings, and all of the really negative stuff. Plenty of awesome things happened, but I can’t tell you specifically what happened at school.

I thought this year I’m going to make sure I remember. Yesterday, we went to see the movie Peter Rabbit. For us, that was the first time we saw a movie that’s not adapted. It was for anyone, and there were lots of kids, and the sound wasn’t reduced. My son sat through, even though he forgot his headphones. That was awesome for us.

So I write the date on a sticky paper and write something that stands out, and drop it in the jar. I think it will make me even more aware of when awesome things happen. I’m capturing them, and I appreciate them more.

My plan is that if we go through a really challenging time during the year, I will pull them out to read and remember all of their victories. And certainly at the end of the year, we will read them to remember what happened.

BLOOM: You just released a book. What's it about?

Sazini Nzula: It’s to acknowledge that it’s difficult, but that as parents we need to embrace the uniqueness that our kids bring to the table. One of the subtitles is: ‘How to embrace the unique way your child is flourishing.’ So the message is that you need to go with your child, whoever they are, and still live your dream.

BLOOM: Is the book only relevant to parents of children with autism?

Sazini Nzula: No, it’s useful for parents of children with other disabilities. There’s a practical chapter, for example, on preparing your kids for adult life, and preparing yourself, the parent, with financial and estate planning.

BLOOM: Do you talk about race in the book?

Sazini Nzula: I do talk about the stigma of autism or disability, but not in the way of race. I have a chapter called ‘Life in An Autism-Unaware World.’ I had originally written about race, but the editors suggested I make it more relevant to everyone and I took it out. I plan to publish those sections on my blog instead.

BLOOM: I think there would be a real appetite for your writing in that area. I know I’d be interested!

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Sadie opened my eyes to reading bias: Audiobooks don't count

By Emily Urquhart

Last week, I encouraged my daughter, Sadie, 7, to cheat at school.

At least she saw it that way.

I’d suggested that during independent reading period she might occasionally listen to an audiobook rather than sight read.

Sadie has low vision but is not a braille reader, so she uses devices like a dome magnifier, an iPad, or a closed-circuit television (CCTV) to read regular-sized print. Sometimes, if the font is oversized (and no, large-print won’t cut it) she can hold a book inches from her face and make out the letters. Digesting her schoolwork aurally can provide a much needed break from this constant visual work-out. Besides, reading is reading, right?

Not according to everyone. My daughter isn’t the first person to suggest that listening is cheating. Adults say this all the time, incorrectly understanding listening to be a passive activity and by proxy suggesting audiobook fans are doing less “work” to achieve the same goal as sight readers.

First, I’d argue that reading is pleasure, enlightenment and access, not work. Second, as a folklorist, I know that stories were oral before they were written. We’ve been literate for 6,000 years, which is a long time, but only a fraction of our evolutionary history. The act of reading partly relies on brain circuits that originally evolved about 150,000 years ago to process language. So sight-reading is actually piggybacking on the pathways used for oral comprehension. This makes sense when you consider that humans have been telling stories since time immemorial, but the novel wasn’t popularized until around the 18th century.

What I wanted to know was how the sight-reading purists had infiltrated my daughter’s belief system when audiobooks and reading-out-loud have been an integral part of our life since before she could speak. My hunch is that it was an inadvertent side-effect of learning in a sighted classroom.

My daughter's sight-reading education is based on a rewards system, meaning that when she reaches a milestone (i.e. 50 books read) she can choose a prize. She does not receive rewards for audiobooks. This has set her up to value sight-reading over audio-reading. It’s also shaping her reading self-concept as she ranks herself against her sighted peers, despite working double-time to view the words in their home reading textbooks. All children compare their reading achievements and kids with disabilities are not immune to this practice.

This means that my daughter sees herself as an average reader despite the fact that she has listened to the entire Harry Potter series five times; that her favourite book is L.M. Montgomery’s emotionally mature, The Story Girl, and that last weekend she listened to Madeleine L’Engle’s, A Wrinkle in Time, on Saturday and on Sunday began listening to Mary Pope Osborne’s kid-friendly interpretation of The Odyssey—arguably the best way to digest this 3,000-year-old oral epic.

I’m proud of these achievements. But I worried. Could Sadie be forming an early reliance on audio when print will also be part of her education experience? I posed this question to University of Virginia psychology professor Daniel T. Willingham, author of Raising Kids who Read: What parents and teachers can do.

First, Willingham explained that there are two components of reading—decoding and comprehension. As my daughter memorizes letters, words and sounds and pairs them together to form sentences, she is decoding. What she brings to the table is her existing knowledge of the world—from the narrative flow of a story to the basics of science, math, history, literature and culture. And this feeds comprehension.

“When it comes to comprehension, for most adults, reading and listening are on par,” Willingham said. But, he pointed out, at my daughter’s stage, reading and listening are serving different functions. Listening to audiobooks helps build knowledge, which is integral to reading comprehension, while the visual act of decoding is a practiced way of becoming proficient at sight reading.

Back when Sadie began the process of learning to read, I asked her vision teacher what would come first for my daughter—reading or mastering her arsenal of vision tools. She’d let the question hover in the air for a moment so that I could find my own answer.

We were sitting together at a child-sized table as I learned how to use one of my daughter’s complex classroom visual aids. It’s a laptop that doubles as a table-top magnifier, connects to the smart board, and has an adjustable arm that you can point at the blackboard to have the image appear on your screen. As I tinkered, the answer came to me.

“She’ll learn to read and use her tools at the same time,” I’d said. “Because the two are inseparable for her.” The teacher nodded. I’d got the right answer.

Learning to decode is an important part of the overall process for a low-vision child who will be a visual learner, so I’ve relaxed my stance on the reading chart. As Willingham told me, “Once you know the notes, you can play music however you like.”

I did consider making an audiobook checklist with the aim of Sadie learning to weigh listening and sight reading in the same way. Then, I remembered an early summer evening when my husband and our two kids began a long road trip and we’d coasted into the night on the melody of Jim Dale’s voice recounting Harry Potter’s first year at Hogwarts. Four hours later, tear-stained and exhilarated, we’d pulled into the driveway of our holiday rental home.

Sadie, wide-eyed and rapt with attention in the back seat, couldn’t bear to have the story interrupted, and, truthfully, neither could her parents. So we left the motor running for a little while longer just to find out what happened next.

Looking back on that night, I realized that my daughter didn’t need a prize chart. She already knew the most important thing about reading: No matter what format, the story is the reward.

Emily Urquhart is a Canadian writer and folklorist and author of Beyond the Pale, a memoir about raising a child with albinism. We interviewed her about the book when it launched in 2015. 

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'We just fell in love with her at first sight'

Catherine and Trish Emmons and daughter Priscilla, 3, are the focus of our new A Family Like Mine video.

Priscilla, known as Cilla, was born dependent on drugs to a mother who couldn't care for her. She spent her first month in the neonatal intensive care unit in pain, on morphine, inconsolable. At nine months, Trish and Catherine adopted her.

"When we first brought her home, we noticed that she would have huge temper tantrums when we would leave her," Catherine recalls. "And I don't mean by leaving the house. I mean she would be in the living room and we'd get up to get a cup of coffee and she would start having a temper tantrum because she was so distraught that you were going to leave her. Because a lot of people don't realize that kids, babies, suffer loss. They think 'Oh, they don't remember.' But at that point she'd already suffered from two major losses. One from her birth mom, and one from her foster mom."

This is a remarkable family with great insights on parenting, adoption and celebrating differences. Thank you to social worker Barb Germon for suggesting them.

A Family Like Mine is a video series about diverse families raising children with disabilities. It's incorporated into the curriculum for second and third year medical students at the University of Toronto.

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Stares at the mall

Many of you know Sue Robins as the author behind The invisible mom, one of our most read posts about social isolation among families of children with disabilities. Sue recently took a poetry class and wrote this piece, which she says is fiction, based on her experiences raising her son with Down syndrome, and stories other families like hers have shared with her. Louise

Stares at the mall

By Sue Robins

Always the caboose

He’s minding the gap

At the back of the line.

Invisible but visible

Is a puzzling way to be

Stared at, all but ignored.

How old is he

The nurse asks his mom

He’s standing right there

A teenager, not a ghost.

I hate my face

He announces one hot July day

Sits on the bench, arms crossed, opting out of the moments.

I was asked

Many times by other moms

Do people stare at you in the mall?

Why yes, yes they do.

First they stare at my boy.

Then they stare at me.

They finish up by staring at my boy again. 

I see their heads turn

To and fro

As if we are a tennis match.

Marked by pity, not love.

This is how you stop making eye contact

Begin walking with your head down

And don’t leave the house.

We are not contagious we cry

But nobody hears us.

Instead they shush us to be quiet

And demand that he inspires them.

Our circle becomes smaller and smaller

Until we collapse into the tiny dot of our four walls

Passing the time by gently and together

Placing a fence of sticks

Against our respective hearts.

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