After trauma, parents need space to 'fall apart emotionally'

By Louise Kinross

Say the word ‘trauma’ among parents of kids with complex medical problems and disabilities, and the floodgates open. Maybe their child is medically fragile, and they run a mini-ICU at home, constantly ruminating over how to prevent the next crisis. Maybe their child is losing skills over time. Maybe they’re tired of fighting—at school, with doctors—for what their child needs. Maybe as their peers become empty nesters, supports for their adult child vanish, and their caregiving role ramps up.

In his new book Trauma and the Struggle to Open Up, Dr. Robert T. Muller brings together his own experiences working with people struggling with painful histories, the research on treatments, and a history of how culture influences whether we support, or silence, trauma survivors. “In trauma, ideas about the world and how things ought to work—the illusions we operate under daily, to feel safe and secure—no longer fit our lived experiences,” writes Dr. Muller, who is a clinical psychologist in Toronto and a professor in the faculty of health at York University.

We spoke about how our parents may experience trauma, answered some questions from readers, and looked at how to find help.

BLOOM: What is trauma and how does it impact how we function?

Dr. Robert T. Muller: Trauma is a big word that’s used to mean different things. Of course when we use the definition post-traumatic stress disorder (PTSD), we mean someone who’s had a real experience in the real world that’s left them really struggling in their functioning. These are truly overwhelming experiences. They overwhelm a person’s ability to cope.

It could be physical or sexual abuse in a family, or service people who have been in combat situations, or refugees in war-torn areas. We also see this in people who have experienced huge medical or developmental losses. Perhaps a child has died. They’re left with difficult memories, with flashbacks. These experiences are real and overwhelming.

What’s common is the person is left with great difficulty coping. Trauma also affects the body. People’s cortisol levels get affected, their immune system is affected. We see people who have medical symptoms as a result of these traumatic experiences. They may have ongoing headaches or pain-related problems or be more susceptible to illness. They may have irritable bowel syndrome.

BLOOM: You note in your book that a common response to trauma is avoidance.

Dr. Robert T. Muller: There are people who have known traumas—there’s independent evidence that they’ve had these experiences—yet they avoid thinking about it, they don’t want to talk about it. It’s important to bear in mind that we don’t want to be judgmental of anyone who uses avoidance strategies. They do it for a good reason, because these experiences are truly overwhelming.

BLOOM: It’s a natural protective reaction.

Dr. Robert T. Muller: It’s what we need to do in order to manage, to try to protect ourselves from overwhelming memories. But after a while it catches up with you. There’s only so long you can avoid these things.

BLOOM: What kind of trauma symptoms might we see in parents of children with complex medical problems or disabilities?

Dr. Robert T. Muller: People respond to the disabilities of their children in very different ways. There are a whole range of responses. For some people, raising a child with disabilities can be a highly enriching, growthful and incredibly important experience in their lives. For others, it can be highly stressful and a lot of loss is associated with it. And there’s everything in between. Sometimes it’s both. It’s really complicated.

BLOOM: I’m thinking that there’s a difference between a one-time traumatic event with your child—like learning your child has a disability, but they’re stable health-wise and can learn to adapt—and repeated life-threatening medical emergencies in your child, or dozens of surgeries, and some don’t go as planned, or being slapped, over time, with new life-changing diagnoses that stack up?

Dr. Robert T. Muller: It makes a huge difference. With one-time events, the adjustment can be difficult. Perhaps parents are adjusting to a loss of function in a child. But then, once the loss is recognized, and a plan is made as to how to move forward, and the family is supportive, you can move forward and adapt to the situation. You can deal with a certain amount of loss.

It’s chronic, ongoing loss and deterioration that is so stressful. When there’s chronic deterioration of a child’s functioning, and parents keep hoping, and then that hope ends up turning into more and more loss, that is hugely stressful.

BLOOM: For parents facing those repeated traumas, wouldn’t it be even harder to open up? Like how would they even find the mental space to do that?

Dr. Robert T. Muller: Parents have to have a space that is their own, where they have licence to fall apart emotionally, and say I’m distressed, I’m scared, and to talk about how they’re feeling. It might be with a therapist or a parent support group. Sometimes people may not even feel comfortable sharing their internal fears with their partner, because they feel they have to put on a brave face.

Having a space where you can talk about how you’re feeling, and then, by the end of the hour, put your pieces back together, so you can go out and be supportive of your child, is essential. Of course your child needs to know you’re protecting them as best as you can, and when you’re with your child, you want to be as supportive and positive and hopeful as possible.

BLOOM: I have a question from a reader.

‘I’m very sensitive to seeing or hearing an ambulance. No matter how good a mood I’m in, this encounter sends me straight back to my son being born too early and very sick. I then have a hard time breathing, get a high pulse and I start to cry almost every time. It leaves me drained of energy and becomes a bit awkward sometimes. It is seven years since my son was born, but it still happens. My question: Can I do something to treat this, to better cope? Is it post-traumatic stress disorder? I have told my psychologist about it, but I don’t get any explanation or advice.’ 

Dr. Robert T. Muller: The short answer is that PTSD should be investigated, and it sounds like a distinct possibility. Absolutely, there are things we can do when we know people have experienced traumatic events and they continue to get symptoms. 

The physiological response this parent has to an ambulance indicates a person is being triggered. There are techniques to help people notice their triggers, to begin to identify them and pay attention to them. If they notice them when they’re happening, they may not be as affected for as long.

Then they can start learning grounding strategies: when you notice you’re triggered, you do things to pay attention to the here and now, so you don’t get drawn back into the event. Relaxation and mindfulness strategies can be helpful. Trauma-informed yoga can be helpful. Psycho-education is important.

BLOOM: What’s that?

Dr. Robert T. Muller: Reading about trauma, and how trauma affects the body. The Body Keeps the Score is a profoundly written and very helpful book. My new book is intended to be helpful for people as a resource to learn about trauma. 

Working with a trauma-informed therapist is important. They can teach you how to recognize your triggers, emotional regulation skills, and how to notice, when you’re paying attention to your body, feelings of shame, betrayal and disappointment. These are all feelings that have an effect on the body.

In the medical situations we’re talking about, people sometimes feel betrayed by the medical community. Or they may feel profound disappointment and shame about choices they made in the care of their child. Noticing these feelings, and working through them in therapy, is important.

Martial arts and trauma-informed yoga can be very helpful for people with a trauma history. They teach us to connect with our bodies. People who have had trauma get disconnected from their own body, and drawn into memories, and they can feel like they’re outside their own body.

BLOOM: A few of our parents commented that PTSD is very real for them. But they don’t feel it’s acknowledged. One questioned why they weren’t told in the neonatal intensive care unit that they might struggle with these issues. I thought this tied with a theme in your book about how our culture can make it hard for people to share trauma stories, that there’s a silencing that happens.

Dr. Robert T. Muller: I agree with you about the silencing. One of the great limitations of the medical community is that it’s not become trauma-informed. We see this all the time when someone goes to the family doctor with depression symptoms that are secondary to trauma. And we now know that people who have trauma symptoms, very, very often have depression. The family doctor, in a 15-minute visit, who doesn’t know the person well, may think ‘I’ll try them on an [anti-depressant].’

That’s not a trauma-informed approach. If you have a parent struggling with a child who has multiple medical treatments and disappointments along the way, and feels that the medical community has only partially heard them, this parent is not necessarily going to benefit that much from being put on an [anti-depressant]. They don’t have a standard, garden-variety depression.

This is someone dealing with tremendous loss, and overwhelming feelings secondary to a traumatic event, and they need to be able to sit down and talk with people.

BLOOM: Another theme in your book is about how family members can experience the same event very differently. One of our readers said: ‘Our biggest struggle is managing our feelings and worries around traumatic events while supporting the child who has experienced it, and his siblings.’

Dr. Robert T. Muller: It is so challenging and difficult for parents to navigate this. In a family where there’s a chronic medical condition, there is the worrying about the child and trying to get the child the support and treatment they need. What happens to the couple’s relationship? Is the couple still able to express love and affection towards one another, or is all of the attention placed on the child with the medical illness?

Siblings may feel that no one pays attention to them. I worked with a young man whose brother developed a chronic illness when he was a teen, and it was so hard for him. His father had died, and his mom had to navigate all of the medical care. This client understood what his mom was going through, and loved his mom, and she sounded like a really good mom. Even though a part of him knew that his mother couldn’t, and shouldn’t, have done anything differently in her care of his brother, another part of him felt cheated out of a childhood. In therapy he needed to express his disappointment in his mother.

BLOOM: We have a number of programs for siblings, and I think you’ve hit on that conflict siblings can have where intellectually, they understand why their brother or sister has to be the main focus. They get it! But emotionally, they feel like ‘I want my mom!’

Dr. Robert T. Muller: That’s exactly it, and they need a space to express that.

BLOOM: Another reader asked whether women and men experience trauma differently?

Dr. Robert T. Muller: I think women have done a much better job of making it clear that this is a real thing that needs to be taken seriously. We’re still far away from taking it as seriously as we need to. There aren’t enough support groups for men. There aren’t enough therapists, for example, who focus on treating sexual abuse in men, even though one in six men have a sexual abuse history. Not seeking help doesn’t mean the problem goes away. In men, there’s often a sense that I’m going to tough it out, I’m going to be a guy.

BLOOM: So men may feel pressure not to talk about their feelings.

Dr. Robert T. Muller: It’s better than when I was a kid, but many dads I’ve worked with still feel the need to hold it all together and have difficulty being honest about their vulnerable feelings. We’re moving in the right direction, and giving young men more options to express vulnerability.

BLOOM: One of our parents talked about the isolation she feels because her parent-child experience is out of step with the norm. When her friends are becoming empty nesters, she is coming to terms with the fact that she won’t have an empty nest, and many of the supports her young adult child used to have will vanish. So her responsibilities will be magnified.

Dr. Robert T. Muller: One of the things we’re talking about here is the issue of losses that continue. But it’s not only loss, because it can be very enriching to raise a child with complex developmental needs. 

On the other hand, this individual is being reminded that her friends are watching their kids move out. If this parent finds a way for her child to live independently, it may look very different from her friend’s children. Or maybe the child won’t live independently. Do people understand how difficult it is? How stressful it is? Friends may try to get it, but they don’t quite get it. They don’t get that stressful doesn’t even begin to describe it. That is very isolating.

BLOOM: You talked in your book about how people who have experienced trauma get used to pretending things are fine. This reminded me of a book written by one of our parents, Jennifer Johannesen. Her son Owen had complex medical problems, and died when he was 12. Jennifer wrote about how when she and her son were meeting with therapists, or others out in the world, ‘I would always wear my shining-hero cape.’ We get the sense that professionals expect her to be ‘supermom,’ and keep it all together. ‘There’s nowhere to go with the reality of hopelessness,’ she told me.

Dr. Robert T. Muller: Part of it is that we have these different personas. She had the role of the rescuer or saviour, but it’s an impossible role. When your child is limited in some way, it’s impossible to be the saviour. You need a space where you can feel sad and worried, and open up about it. It may be very difficult for you to do that, but you need it.

BLOOM: You wrote in your book about cultural influences—like the positive thinking movement—that encourage people to suppress sadness.

Dr. Robert T. Muller: Yes. On the one hand, the person knows there’s a loss, but there’s a lot of pressure put on them to wear the super-hero cape. Then, when they feel the loss, they feel bad.

BLOOM: Like, what’s wrong with me?

Dr. Robert T. Muller: That’s shame. It’s important for people to understand that it’s okay to feel a sense of loss. It doesn’t make you a bad parent.

Of course, when we communicate with our child, we want to be positive and supportive and as hopeful as possible. We don’t want our child to become the parent’s therapist.

But a part of us can feel sad and deeply worried. For example, I feel sad that I can’t pay enough attention to my child’s siblings. Parents need to know that it’s okay to feel these things.

BLOOM: I googled ‘trauma, therapist and Toronto,’ and was surprised at how few names came up. How can a parent find a therapist and are they publicly funded?

Dr. Robert T. Muller: There are a number of OHIP-covered trauma programs that are not only for people who are survivors of physical or sexual abuse. A parent who is experiencing post-traumatic symptoms related to a child’s medical illness may be eligible. There’s a program at Women’s College Hospital, at Mount Sinai Hospital, and at the Homewood Health Centre in Guelph. 

What’s important is that the therapist has worked with people who have had different trauma histories. When you’re shopping around for a therapist ask the questions: Have you worked with people who had post-traumatic stress disorder? Have you worked with people who experienced losses because of family issues dealing with a child’s severe disabilities or illness?

BLOOM: In your book you talk about how the relationship between a therapist and client is more important to a good outcome than a particular approach.

Dr. Robert T. Muller: Evidence-based research has been showing this about psychotherapy in general and trauma therapy specifically. In our quest to say ‘I’ve got the best brand of therapy,’ what is lost is that ultimately any brand of therapy is pretty much equivalent—if you have a good therapy relationship where the therapist is very attentive to what’s happening between the therapist and the client. 

The good news is that if you have trauma symptoms from being in a family situation where you’re coping with developmental losses or illnesses or disabilities, and you seek a therapist, and they say ‘I do cognitive behavioural therapy’ or ‘I do emotion-focused therapy,’ those issues are less important than whether the person is trauma-informed.

Do they know how to deal with trauma issues that may come out in the therapy relationship? Painful feelings can be provoked in the client and in the therapist. Perhaps the person had doctors who they feel betrayed by, or deeply disappointed in. Or maybe they had doctors who say ‘Be positive,’ and they feel I can’t ever admit that I’m feeling pretty negative right now. The therapist needs to be really attentive to when the client is hurt by something they say, and when they’re encouraged by something they say. 

You can read more about Dr. Robert T. Muller's work here. He is also the founding editor of The Trauma and Mental Health Report, and lead investigator on several multi-site programs to treat interpersonal trauma. His new book was recognized as the best written work on trauma in 2019 by the International Society for the Study of Trauma and Dissociation.

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'Our nursery programs are a model for social change'

By Louise Kinross

It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says.

Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born.

In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. “Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,” Silvia says.

BLOOM: How did you get into this field?

Silvia Souto: After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play.

I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.

BLOOM: What is a typical day like now at Play and Learn?

Silvia Souto: The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.

We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story. 

A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.

BLOOM: How many children are in a group?

Silvia Souto: I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.

BLOOM: What’s the greatest challenge?

Silvia Souto: Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first.

BLOOM: Is there anything specific you do to manage stress?

Silvia Souto: We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress.

Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit.

BLOOM: What’s the greatest joy of your work at Play and Learn?

Silvia Souto: The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.

BLOOM: What qualities do you need to be successful in your role?

Silvia Souto: Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative.

BLOOM: How do you get your energy?

Silvia Souto: At the end of the day, I like to say I’m enthusiastically exhausted.

BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?

Silvia Souto: Isabel and I went to the World Forum on Early Care and Education, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.

Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.

BLOOM: What was your workshop about?

Silvia Souto: We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate.

BLOOM: How did people respond?

Silvia Souto: They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.

We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.

BLOOM: If there was one thing you could change in children’s rehab, what would it be?

Silvia Souto: I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.

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Off-duty officer kills non-verbal man, injures parents in Costco

By Louise Kinross

This is a horrifying story for all of us in the disability community who love someone who doesn't speak, and may not be able to comply with police orders in conventional ways.

On Friday night, Kenneth French, 32 (in photo above right, with his parents), was shot and killed by an off-duty police officer in a California Costco store. The officer also shot and critically injured French's parents, who were grocery shopping with him.

Police, speaking to reporters just after the incident, said it happened after an argument between two men. According to this news release from the Corona Police Department, "Without provocation, a male unknown to the officer's family assaulted the officer while the officer was holding his young child. This attack resulted in the officer firing his weapon, striking the male and two of the male's family members." The child was not injured.

However, French's cousin, Rick Shureih, told the Los Angeles Times that French was nonverbal and had an intellectual disability, so a verbal argument wasn't a possibility. 

"Speaking about his cousin, Shureih told the paper, 'He was a gentle giant...He's never been violent in the past. He's always been very cooperative and kept to himself.' Shureih said it's possible his cousin may have bumped into someone but he wouldn't have been able to communicate that he was sorry."

Police have not named the officer involved, who was released from hospital with minor injuries. 

This BBC piece 'Don't shoot, I'm disabled,' looks at the hundreds of people with disabilities who are killed by police in the United States each year, because they don't respond in conventional ways to police commands. It could be a person who is deaf, or mentally ill, or who, like French, has an intellectual disability.

In a more recent Los Angeles Times piece, we learned that the French family was from Toronto. "Sandra Serrao, who lives in the Toronto area and has been friends with the French family for more than a decade, said the couple and Kenneth moved to California from Mississauga a few years ago to help care for [their] elderly parents...She said Kenneth French was not the type of person to provoke anyone..."

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In 2019, physical restraint of disabled people is still a thing

Illustration from Captive and invisible

By Louise Kinross

A couple of months ago I wrote down 'physical restraint and seclusion' as a story idea. But when I looked at it on the list, I kept hoping there would be a reprieve. 

Instead, every time I went on social media there was a new horror story about disabled children and adults who were restrained, physically or verbally abused, or locked in a school isolation room, hospital, assessment unit or 'care home' for adults. 

Yesterday, I read Captive and invisible. It's a series of stories about disabled people who are locked away in hospitals, institutions and private homes. It was produced by the UN Special Rapporteur on the rights of persons with disabilities. One of the stories is about people in Ghana, for example, who are sent to prayer camps, to be healed, where they are shackled and live in horrendous conditions. Catalina Devandas Aguilar, the UN expert, discusses the series here.

The selection of stories, such as the one in the image above, suggests that the problem is in developing countries. "Amil is autistic, and he lives in a rural village with his family," is the text that accompanies it. "They have no help, and there are no services in the community, so he spends all his days and nights locked up in a room."

But this isn't just happening in low-income countries. It is happening in Europe and the United States and right here at home in Canada.

Last month, the BBC aired a shocking investigation into a British home for adults with autism and intellectual disabilities. The home, funded by the National Health Service, is referred to in the British press as a 'specialist hospital for people with learning disabilities,' which is the term used there for intellectual or developmental disability.

A reporter went undercover as a worker and filmed her colleagues taunting, intimidating, degrading, provoking and repeatedly restraining patients. They bragged about times they'd assaulted patients, like banging a person's head against the floor. Then it was revealed that patients had reported bullying by staff in an inspection report in 2015 that was never published. Last year, the home was bought by an American multinational company. What interest, other than monetary, could a U.S. multinational have in a British hospital for people with intellectual disabilities? Ten staff members were recently arrested.

A similar case in New York City came to light five years ago in a home for adults with developmental disabilities dubbed the "Bronx Zoo" by staff. But despite an investigation that found staff at the state-run home smacked, pushed and punched residents, New York State officials who tried to fire 13 employees for abuse or neglect were unsuccessful.

According to an article earlier this week in The New York Times, the workers were shielded by the state arbitration process. In addition, The Times found that over one-third of employees statewide found to have committed abuse offences at group homes and other facilities between 2015 and 2017 were put back on the job.

Which reminded me of my own son's experience back in 2009, when a school staff member, angry because he picked a butt up off the ground in a park, and pretended to smoke it, dragged him across the playground and pushed him into his wheelchair. He had a dislocated hip at the time. Other staff reported this person, but the principal didn't deem it necessary to call me until 24 hours later, when she asked if my son had told me about an 'incident.' No, he doesn't speak, he hadn't, I said. It wasn't until that night, when I asked him about it, that he signed the story to me. He never would have told me otherwise.

The staff member was sent home, the police were called, and I was asked to check for bruises. I was told that the staff member would never be in a class with my son again. Imagine my surprise, then, when the following year, this same staff person turned up working at the mainstream school my son had transferred to. And had the nerve to approach, and talk, to my son. So I had to call the principal and read him the riot act that this person was to have no contact with my son.

Only two days ago, this piece in The Globe and Mail summarized the Canadian practise of physically restraining or isolating, in locked rooms, children with autism or other disabilities who "act out." Sheila Bennett, a professor at Brock University in St. Catharines, Ont. was quoted as saying she was horrified to hear about a plan to build more seclusion rooms in Ontario school districts. "When an isolation room exists, it becomes a viable alternative for behaviour and inhibits our ability as experts and educators and compassionate people to find solutions that work better," she said.

In April, a British teenager with autism and mental health problems who had spent two-and-a-half months in an isolation booth at school, a variation on the isolation room, where students sit in cubicles in silence and have no direct teaching, tried to kill herself. Her mother said she was unaware, for months, of what was happening.

I'm not an expert, but how could any educator possibly imagine that a child with autism and anxiety would blossom sitting alone in silence?

Just yesterday, I read a post in a closed Facebook group for parents of children with disabilities where a local parent asked if a school has to document every time a staff member physically restrains her child. She'd been asked to pick up her young child in the morning, and it was only after he was in the car that she learned that a teacher had put him in a hold. 

A teacher can restrain a child in a physical hold, and not tell a parent about it?

In 2019?

In another Ontario online group a parent spoke about how her adult son with autism has spent months in a locked psychiatric hospital because there are no options for him to live in the community. And she knows of a handful of families in similar situations.

Last week the photo below was tweeted by many British parents to show what it's like for a parent in the U.K. to visit their autistic teen who is locked in an inpatient mental health facility. 

How did being held like a criminal become an accepted practice for disabled children and adults in our schools and hospitals and group homes?

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Why do so many parents feel inadequate?

By Louise Kinross

When I first saw the title of Ann Douglas's new book, Happy Parents, Happy Kids, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems.

But in Happy Parents, Happy Kids, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.

BLOOM: In 2015 we spoke about your book Parenting Through The Storm—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book?

Ann Douglas: I thought a lot of the messages conveyed in Parenting Through The Storm needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical. 

BLOOM: What kind of parents did you interview in your new book?

Ann Douglas: I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions.

I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work. 

BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you?

Ann Douglas: It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things.

Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families.

Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages.

Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’ 

BLOOM: What other factors make parenting feel particularly hard these days?

Ann Douglas: In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue.

A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home. 

BLOOM: What in your new book will resonate with parents of children with disabilities?

Ann Douglas: I think what’s different about this book is that it’s a much more political book. Parenting Through The Storm was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents. 

BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone?

Ann Douglas: No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work?

How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent. 

BLOOM: You talk about the importance of parents remaining calm.

Ann Douglas: First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us.

I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people. 

BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems?

Ann Douglas: One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch. 

BLOOM: So a group online for parents of kids with disabilities?

Ann Douglas: Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers? 

Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud of—a letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels. 

BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges.

Ann Douglas: We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us.

We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load. 

BLOOM: I’ve found the messages from Kristin Neff’s books on self-compassion helpful.

Ann Douglas: The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself. 

BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.

Ann Douglas: At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.

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Busy engineer finds happiness in children's hospital

By Louise Kinross

Emile Benyamin is an engineer who spends his days taking care of robots. His robots extract DNA from human blood and saliva, so it can be studied in research and clinical labs in hospitals. Emile travels across Canada to train scientists on the robots, and troubleshoot when there are problems.

But when BLOOM interviewed Emile, he had come in to Holland Bloorview on a Thursday night to volunteer with young children in our Ronald McDonald Playroom. “Emile is always down at the level of the kids, right in the thick of it all,” says Daniel Scott, who coordinates the playroom. “He’s very eager and hands-on with building or imaginative play.”

Emile's presence meant that the children’s parents could attend a talk about getting their kids, who have disabilities, involved in sports.

On Saturday mornings, Emile, whose three children are grown, drives in to the hospital from Richmond Hill to volunteer with inpatients with the most complex medical problems. Many, like Krystal above, use ventilators to breathe. Last Christmas Emile dressed up as Santa Claus on the unit. We spoke about why he’s so committed.

BLOOM: How did you hear about Holland Bloorview?

Emile Benyamin: I work in hospitals—even Sunnybrook is one of our customers. I love kids in general and I always wanted to come here to volunteer. I do a lot of work for SickKids hospital. When I applied to volunteer here, I had to get two references, and one was from a PhD I work with at SickKids. I’ve been working at SickKids for more than 10 years, and they know me well. When I joined here, I was so impressed with the hospital and the services for the children. That’s why I love it so much, and I wanted to give more.

BLOOM: What is a typical shift here like for you?

Emile Benyamin: My main shift is Saturday morning from 9:25 to 11:45 on the complex continuing care unit. We have a supervisor who runs a program—like art or cooking—and we usually work one on one with the children. Some are able to participate and others aren’t. But we still work with them, and hold their hands. Some of them we don’t know if they feel or hear us, while others hear and understand. If there isn’t a program, we may sit with a child at the bedside and read.

BLOOM: What’s the greatest challenge of the work?

Emile Benyamin: My focus is on how to make the children happy, how to comfort them, and most importantly, making sure they are safe.

Even though they are not speaking they are communicating a lot. They may smile. When one child is not comfortable, she will shake her head. We know something is bothering her—maybe she needs [her airway] suctioned, or she wants us to change the song we’re playing.

BLOOM: So you learn how to read their communication. You’re a very busy person. How do you make time to volunteer here?

Emile Benyamin: I don’t go to movies. This work is fun for me. Put me somewhere where I can play with kids. It’s my relief. It takes away all of the stress and hassle of thinking about work and problems.

BLOOM: What’s the greatest joy?

Emile Benyamin: I love the kids so much that I find myself very happy being with them. Because the children are weak or sick, I feel good about doing something good for them. I'm always excited to work with them.

BLOOM: I know this place can be like a ghost town on the weekend. How do the children on the unit benefit from people like you coming in?

Emile Benyamin: In my opinion, we do a very good program, and the program drives us. I’m just a part of it.

BLOOM: How did you get so committed to volunteering in the first place?

Emile Benyamin: I volunteer with a seniors’ home close to my house in Richmond Hill. I’ve been doing that for 10 years. I have so many friends there. I had one client who was a very good friend of mine who passed away last year. She was 96 and she had a very sharp memory. She would ask me to sit, so she could tell me stories from when she was four years old. It’s heartbreaking sometimes when I go and I don’t find someone I’ve been seeing for years.

BLOOM: Has anything surprised you about your work at Holland Bloorview?

Emile Benyamin: Yes. The staff are very well trained and they respect the kids so much. They really care about them.

For example, sometimes we do reading, and one boy’s eyes are usually closed. I was taught to put the book mark exactly where I stop, so that when the next person goes to read, they know where to start. I see a lot of respect in this. I’m trying to learn from the staff.

BLOOM: You mentioned that most of the volunteers are students.

Emile Benyamin: Yes. I’m the only old guy there. I love to see people of a young age volunteering. The community needs it and the children need it. When we have a new, young volunteer, I keep an eye on them, too.

Emile and Emma at work making chocolate chip cookies that fill the room with fragrance.

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'Kindness matters...that is what good care is'

By Louise Kinross

Karen Ward has worked with children with disabilities for over 30 years. I met her 22 years ago, when my son attended a Scarborough nursery school run by Easter Seals (the program is now run by Holland Bloorview). Karen explained how the integrated, play-based program worked. She was so warm and kind and upbeat. Karen hasn’t changed a bit, but she now manages many clinical programs at Holland Bloorview, with a focus on work in the community. We talked about the joys and challenges.

BLOOM: How did you get into this field?

Karen Ward: I took a bachelor of applied science in child psychology at Guelph University. Do you remember Robert Munsch?

BLOOM: The children’s book author/illustrator?

Karen Ward: Yes. He was one of my professors. He was fabulous in how he engaged students to engage young children. He was someone who made me understand the importance of early learning and that I wanted to be a part of it. My first role after school was running a daycare program for children with special needs at Variety Village. It was run by Easter Seals, but located at Variety Village.

BLOOM: And later the nursery schools in the community that were run by Easter Seals became Holland Bloorview programs.

Karen Ward: Yes, in 2003 Joan Ferguson and Sheila Jarvis could see that the children we served in the Easter Seals programs were followed here, and there would be better alignment to have the programs run by Holland Bloorview.

The nursery schools were aligned with participation and inclusion, because they were community programs. I’ve always been interested in community-based education. Whether we have early childhood educators doing play-based intervention with families in their homes, or specialized teams who go into Toronto day cares to provide therapy or help adapt a program, or therapists who support clients who use communication and writing aids at home and in schools.

BLOOM: Why were you interested in children?

Karen Ward: I came from a really large family where there was a lot of family involvement. I think I saw the amazing potential in young kids. I saw they were this wonderful canvas for what could be, and I wanted to be a part of that.

I remember going for my first job interviews and they were to work with typically developing kids. I thought that might be interesting. But then this opportunity at Variety Village came up and I thought it would mean a huge amount of learning for me. I was fascinated by it.

BLOOM: Was that your first exposure to disability?

Karen Ward: No. When I was in my teen years I was a swimming instructor and a lifeguard and I had taught children with disabilities before.

BLOOM: What is a typical day like here?

Karen Ward: You’ve got to be kidding! I’m constantly changing hats. I may get calls from any one of the programs to help them troubleshoot, when we need to make adaptations.

I have amazing teams that run exceptional programs, and I’m honoured to work with them. A typical day is always trying to improve the quality of what we’re doing. One of the big things we’re doing right now is building community capacity.

A lot of my role is making sure I understand politically where we’re going, and who are the internal and external partners we need to be constantly dealing with to push that forward. Now we’ve become part of ambulatory services, we’ve really broadened our scope.

I think early learning, especially, is being recognized as an important enhancement to a lot of programs. For example, when a child under age five comes into our spina bifida clinic, they will see an infant development worker who will help link the parents to supports in the community.

Or if we have a young inpatient here about to be discharged, we will give them information about local services, whether that’s in Toronto or Thunder Bay. People are asking our staff to share their expertise, whether it’s in creating play-based therapies for kids with autism, or making sure literacy and communication are embedded in school curriculums for our clients.

BLOOM: What is the greatest challenge of your job?

Karen Ward: Making sure that we clearly hear what our clients and families need. They drive our programs of excellence. They make us think differently. They’re at the core of everything we do.

BLOOM: What’s an example?

Karen Ward: Well, we’ve looked at revisions to the referral criteria for communication and writing aids. Based on the organization's No Boundaries strategic plan and client and community feedback, we worked diligently to streamline the process. We made it more user-friendly, understandable and easier to access. We talked to families, reflected on best practices and what other agencies are doing, and adapted the criteria.

BLOOM: What's the greatest joy?

Karen Ward: Talking to the parents. No question. Staying connected with the parents over time. I’m known so many clients since they were two or three years old. They’re the ones who have made me change. I’m fascinated by clients and families, and I listen to them.

Then there are the frontline clinicians. I’m in awe of what they do and so respectful of it. I don’t want to be their leader, I want to be their partner. I’m so pleased when we, as a team, make a quality improvement and everybody sees the benefit of it. I’m a real hands-on leader.

BLOOM: What other qualities do you need to be good in your job?

Karen Ward: You need a tremendous level of awareness and of kindness. You need to figure out how to manage people. You may need to make decisions that don’t always have the full support of everyone. However, you acknowledge that concern, and ask that we all just give it a try. We need to keep trying, and to have a vision of what can be better, even though we might stumble along the way. I’m always telling staff that if something doesn’t work, we will work to make it right.

BLOOM: What emotions come with the job?

Karen Ward: Tremendous joy, because I absolutely want to be working here. I do have concern about the future of some of our services for our families, based on municipal and provincial politics. I do worry about how some of our families will access some programs. I do get frustrated that we can’t do more, or there isn’t enough time in the day. I’m often concerned about the wellbeing of the staff. They give 150 per cent, and I’m always trying to keep their health and wellbeing in check. I care very much for them.

I love the busyness of my work. I love that it’s never the same day.

BLOOM: Is there anything you do to manage stress?

Karen Ward: I really love walking. I walk on the boardwalk at the beach. And I have a couple of really good friends, and sisters, that I make sure that I see and spend time with.

BLOOM: If you could change one thing about children’s rehab, what would it be?

Karen Ward: I think we need to broaden what we do. We’re trying really hard to expand our hours and the diversity of groups that we offer. Our families have such a hard time when our hours are rigid. 

The other thing I think is key to success, and which we haven’t done as well as we could, is to infiltrate the community. We need so much more of our rehab services in core community groups—in camps, sports programs, library programs. We need so much more of us 'out there,' instead of 'in here.' We need to broaden our arms. If we keep rehab within four walls, it will never be as inclusive as we need it to be.

BLOOM: If you could give yourself advice on your first day, from where you sit now, what would it be?

Karen Ward: Kindness matters so much. I think we need to remember to be kind to everyone—families, staff, each other. That is what good care is.

Because my background is in education, people used to say I’m not a clinician, so how can I manage clinicians? You don’t have to be clinical, you have to have solid core values. Kindness and honesty are two values that are very important to me. I’m very good at acknowledging I don’t know everything. When I need to know about speech, I go to an SLP. If I need to know about occupational therapy, I go to an OT. As a leader, you need to be able to pull from different people to figure things out. Together, we can build remarkable teams and programs for everyone.

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