When parent hopes and rehab truths clash

By Louise Kinross

Sarah Davidson is an occupational therapist at Holland Bloorview. For 14 years she’s worked with children with complex medical needs who are hospitalized here after painful surgeries or life-changing illness or trauma. Of course, that also means working with their parents. She worked with my son when he was an inpatient. We talked about what it’s like to work with families who are under enormous emotional stress.

BLOOM: How did you get into this field?

Sarah Davidson: I always knew I wanted to work in healthcare. When I finished my undergrad degree, I took four years off and explored different professions. I looked at nursing, medicine and physio and occupational therapy, and OT was what worked out for me. At the time I worked at SickKids in an administrative role. I’ve always wanted to work with kids and once I finished school I waited to start my first job as an OT at Holland Bloorview so that I could find a job that fit with my interests. 

BLOOM: What is a typical day like now?

Sarah Davidson: A lot of the OTs start early. We’re here at 7:30 a.m. That way if a child is learning how to get dressed in a different way, we can assess them and try to help them become more independent. We see a lot of inpatients for active therapy, so we book sessions throughout the day. It could be to work on strengthening their arms, being able to sit while they play and finding ways for them to self-feed. Our main goal is to help kids to be as independent as they can be.

Equipment is a big part of what we do—trying out equipment to toilet, or to be able to have a shower or bath. We do a lot of wheelchair prescriptions and prepare families to go home. It could be talking to a family about how to transport their child with a ventilator.

BLOOM: What’s the greatest joy of the job?

Sarah Davidson: I think, like everyone who works here, we love coming and seeing the children and the families. I love seeing kids make changes and be able to go home with their families, because it’s difficult to be in hospital. I also really love learning about the experiences of the different families I work with and where they come from.

A huge part of my love of this place is the team I work with. I’m surrounded by people who support me and who I can learn from. They’re there when you're not sure what to do, or have a difficult situation. They bring treats. They make you laugh. They know about your life outside of Bloorview, so they know a lot about you as a professional and as a person.

BLOOM: What is the greatest challenge?

Sarah Davidson: One of the greatest challenges for me is balancing a family’s hope for their child’s recovery with my own understanding of what their recovery will look like. We may know, deep down in our hearts, that a child is not going to do some of the things they did before.

I’m thinking about what the family will need to do to get home. Will they need to change how their home is set up? Or move to a different house? Or make decisions about wheelchairs and equipment that they never anticipated their child needing?

We’re at a place where we’re ready to have these conversations, but families often aren’t ready.

The wheelchair conversation is the hardest. 

BLOOM: I know Barbara Gibson has done research about how our culture places so much value on walking.

Sarah Davidson: Sometimes Holland Bloorview is the parents’ first exposure to disability. Their child may have gone through something traumatic and lost a lot of their abilities. And the parents are still grieving and in crisis. Sometimes needing to make significant decisions that will impact their child’s future is just too much. 

BLOOM: It sounds like it’s an emotional process that you can’t rush. On the other hand, you must feel pressure to make sure they have what they need when they go home.

Sarah Davidson: The time they’re here isn’t indefinite, and it’s a window during which we can help support them. The fact that they will need to be discharged is a pressure.

What I’ve learned, after being here for so long, is that some families won’t be ready to make those big decisions while they’re inpatients, and that’s okay. Sometimes they need to go home and live their new reality first.

BLOOM: What kind of emotions come up for you around difficult conversations with families?

Sarah Davidson: Sometimes I get nervous. I can also feel sad when I put myself in the family’s situation—they have to think about things they never thought they would think about.

BLOOM: Do families sometimes lash out at you?

Sarah Davidson: When the family’s stress level is high, it can be directed onto staff. Parents may say hurtful things. I don’t think families realize that we take their situations home with us. I try not to take things personally, but it can be very difficult at times.

BLOOM: As a parent I didn’t think about how it felt to be on the staff side of hard conversations until I heard a therapist here describe it. Is there anything you do to support yourself?

Sarah Davidson: We use our team to help deliver a consistent message. That may be during a family team meeting, or by pulling together a smaller team. So the physio and I may meet with the family together. If the physio has been working on walking, having us both there to make suggestions is helpful.

BLOOM: What do you do to manage your own stress?

Sarah Davidson: I do my best to take my lunches and take advantage of what’s offered at Holland Bloorview. I go swimming at lunch or participate in the weekly mindfulness session. I also participated in the mindful self-compassion group last fall. I go for a walk or come and read in the library. It’s easy to get stuck at your desk working through lunch but when I do, I’m exhausted at the end of the day. Then I’m not really there for my own family.

BLOOM: What qualities are important in your role?

Sarah Davidson: Being able to listen to what families want and need. Even if you’ve done something a few times with clients with the same diagnosis, every family needs something different. Being patient, and realizing you will have to say the information over and over again, in different ways, for families to hear and understand it. Being able to have empathy and compassion for what they’re going through.

BLOOM: What about creativity?

Sarah Davidson: That goes with knowing every family is different. Sometimes you’ll plan for a session but it doesn’t go as you thought it would, and you need to think on the spot to try something different. For the older kids, you can negotiate things, because they understand that you’re trying to help them. But for the younger kids, you have to make what they need to do appear fun.

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

Sarah Davidson: I think better access to services and resources when families leave here. Our families are fearful and worried about finding community nursing to support kids who have tracheotomies and ventilators. Respite services are limited and families are burning out. Even in a big city like Toronto, the home nursing isn’t there to support families.

Funding is another big area of need. A lot of the equipment is very expensive. We also need better access to therapy services in the community. There’s some, but not always the frequency that is needed.

BLOOM: If you had to give advice to yourself on your first day, from where you stand now, what would you say?

Sarah Davidson: It’s okay not to know everything. You’ll never know everything, and you’ll continue to learn from your colleagues and from every family you work with. When we’re honest with families that we don’t know everything—that we’re not sure about what the best solution is—it makes it easier to partner with them and get their input.

BLOOM: Because we can’t necessarily ‘solve’ things in a traditional sense for many of the kids and families we work with.

Sarah Davidson: Sometimes you can’t change what is. Sometimes you can’t make it better.

BLOOM: If you could change something about our workplace, what would it be?

Sarah Davidson: Recognizing that staff are under an incredible amount of stress. They’re dealing with an ever-increasing complexity of clients and families, and it’s important to offer supports.

For example, I felt valued that we were allowed to take the eight-week mindful self-compassion course. It was a significant amount of time out of our work week that enabled me to connect with clinicians, not just in my program, but across the organization. I got to hear their stories and learn how to better take care of myself.

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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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While in hospital, Fiaz creates bright, bold, energetic art

By Louise Kinross

Fiaz Rahman has had a rough six months. The 18-year-old developed a pressure injury in August that prevented him from going to school for months. Just before Christmas he was hospitalized at Holland Bloorview. "More than physically, it was emotionally painful, because I wasn't in control of it," he says. "I didn't intend for it to happen. It ruined my lifestyle. I couldn't enjoy my summer or go to school. It was difficult for my parents, and I couldn't hang out with friends. I felt trapped, isolated and lonely." While in hospital, Fiaz has pursued his love of art, and he has dozens of bright, bold, energetic pieces on display in his room. We spoke about his stay here.

BLOOM: How has art helped you cope while in hospital?

Fiaz Rahman: I've always loved art. I love media and I'm a poet. I love movies and colours and imagination. They're all a big part of my inspiration. Doing art here showed me a lot of things I didn't know I had inside me. It feels like I'm creating content for the world. You know how artists leave their mark and their legacy, and make a name for themselves?

I like colours—constructing colours, colliding colours, obstructing colours. I want to create art as a business in the future, as a career. I want to go to the Ontario College of Art and Design. I like trying new things, and seeing what works, and what doesn't work, for me. I like making something better.

BLOOM: Where did you do your art while here?

Fiaz Rahman: I did some of it in recreation and some of it by myself in my room.

BLOOM: I noticed you have some art gallery tickets on your windowsill.

Fiaz Rahman: Dr. Flap, the clown, printed those up. I've tried to invite everyone and anyone.

BLOOM: What has been the hardest part of being in hospital?

Fiaz Rahman: I love this place. It's an amazing place. People need each other and we need to take care of each other. Kindness goes a long way. I've had a lot of support and I'm happy mentally and emotionally here. I still have my pressure ulcer, but it's healing and I'm so grateful. It's not as deep as it was. 

BLOOM: Do you have any advice for our staff?

Fiaz Rahman: It's important for staff to understand where a child is coming from. Don't judge them. Understand and have empathy for them. You need to connect to the kids.

BLOOM: What advice would you give a child or teen who was coming to stay here?

Fiaz Rahman: It's such a great facility. Speak to people here, and let them help you. Create new friends. Surround yourself with a positive environment. Try to find out what you're good at and explore your passions. It's going to be tough, so you have to be strong and patient.

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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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Why silence is golden after doctors express empathy

By Louise Kinross

Every day, doctors in children’s hospitals meet with parents to talk about life and death medical decisions. It may be whether to surgically create a hole in a child’s windpipe to place a breathing tube, whether to remove a life-sustaining ventilator, or whether to proceed with a high-risk medical procedures, such as a third bone marrow transplant.

Studies show that when families feel their emotions are heard and understood by doctors, they’re more likely to share information that’s critical to the best care.

But what features of a conversation effectively transmit a message of empathy?

A fascinating study in JAMA Network Open looked at the transcripts of 68 recorded care conferences about high-stakes medical decisions at Children’s National hospital in Washington, D.C.

Researchers wanted to evaluate how doctors communicated that they had heard and understood parents', or other family members', emotions.

“The biggest surprise was the 18-fold increase in moving the conversation along and getting more information on a family’s fears, hopes and values just by using ‘the pause’ after expressing empathy,” says lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children’s National.

While doctors in the study recognized and responded to emotion in families 74 per cent of the time, in almost 40 per cent of cases they didn’t then pause—giving families a chance to respond. Instead, they reverted to medical jargon.

“I always thought the pause was powerful, but I didn’t expect it to have that magnitude of effect,” Dr. October says. “It supports the thought process I had going into the study, which was that families who have their emotions responded to are more likely to share additional and new information. Language really does matter.”

To categorize empathetic words in the transcripts, researchers used the NURSE pneumonic on how to communicate with seriously ill patients and their families: naming the emotion, showing understanding, being respectful, giving support and exploring feelings.

Most often doctors did respond to emotional cues from families, but too often they immediately plunged back into clinical talk, followed their kind words with ‘but,’ or were interrupted by another doctor who provided more medical data.

BLOOM interviewed Dr. October about the study.

BLOOM: Why was there a need for this study?

Tessie October: I do both palliative- and critical-care medicine and I find that by straddling both, I have a unique understanding of the parent and family and their role in the care of their child. In the ICU, we don’t always respond to family’s emotions in the way families need to be supported. We know the families need medical information to make informed decisions, but we also know these are heavy, emotionally-laden decisions.

I find, anecdotally and in the literature, that we lean more heavily toward the medical information without the emotional support, and we need a better balance. In children’s hospitals, we do have other support folks like social workers or our palliative-care team or our chaplain, and physicians rely on them to provide the emotional support. But that’s not what our families want. Families want emotional support from their doctors.

BLOOM: How did you define empathy?

Tessie October: We defined it, looking at the Webster's dictionary, as being aware of the feelings and emotions of the families, and responding to that emotion with care and love and compassion.

BLOOM: What were the key findings?

Tessie October: The most important finding was that silence matters. Physicians in general are trying to be empathetic—they’re responding to the emotional cues of families—but they don’t realize that they’re sometimes burying that response in medical information, and when they bury an empathetic statement, families don’t hear it.

So giving an empathetic statement and pausing is what allows the family to hear. But more than that, after a pause, the family was more likely to talk about their worries, hopes and values, and these are the things we need to make some of these decisions. It wasn’t just that doctors responded and families felt better. It was that the pause moved the conversation along.

BLOOM: Your study notes that doctors sometimes linked a kind statement with ‘but,’ and this wasn’t helpful. Can you explain?

Tessie October: 'But' is a conjunction that indicates to the family that the next clause will contradict the previous one. So a doctor might say ‘Gosh, this must be really hard for you. I can’t imagine how hard this is—but—we do need to start making some decisions.’ Parents no longer hear the first part, and all they hear is: ‘You guys need to move this along.’

This happens pretty frequently. As much as doctors are trying to be compassionate, we have a purpose and an agenda in the meeting, and we want to get to it.

BLOOM: I assume that time pressures are a factor?

Tessie October: We’re trying to change the way we think about the family meeting. In my research on communication techniques and training, we find that when you slow down and do less of the talking, you get more information, and the meeting is shorter. You spend less time, you get less conflict, and you respond to the family’s emotions. As a result, they’re able to collect themselves and are ready to hear more information. Think about when you’re in an emotionally distraught state. Until you come down on the emotion, you can’t take in any information. Until you respond to family emotions, they can’t hear medical information properly.

BLOOM: Why do doctors often bury compassionate statements in medical talk?

Tessie October: It’s what’s most comfortable. It’s how we talk with each other, and how you’re evaluated in medicine. It’s the language that physicians know. It’s much harder to be in an emotional space and sit with a family in silence, or make statements that you know will hurt.

It’s harder to sit with a family that’s crying than to revert back to the stuff we’re comfortable with—talking about the kidney or lungs or other medical parts. It’s an avoidance behaviour that happens when you’re uncomfortable. We need to learn the skills that are necessary to respond to emotions, without feeling guilty. Having those tools in our tool box can be helpful.

BLOOM: How do we prepare doctors to do this emotional work? You note in the study that when a parent is distressed, it’s often difficult for doctors to pause after conveying empathy. Don’t they need coaching on how to do this?

Tessie October: This is the hard work we’re trying to do. We don’t get this anywhere in our critical-care training. In palliative-care training, we do spend a lot of time talking about emotions and how to connect with families. Our procedures in palliative care include responding to family’s emotions and navigating care conversations and meeting as a team. But for a lot of ICU doctors—and other doctors beyond that—this is not part of their training.

We don’t think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube. I’m trying to change the framework of how we think about these conversations. If you think about how we even evaluate people who are appropriate for medical school, it’s not about how they communicate with people. We’ve decided that technical skills and the science background is enough to be a good doctor.

What we’re finding is that doctors who have better relationships with families are doctors who are less likely to be sued, who find more meaning in their work, and who are less likely to burn out.

BLOOM: Don’t doctors also need to regularly express their own emotions to the work they do? We did a narrative group with our inpatient nurses here, and one of the findings was that prior to the group, nurses felt they were alone in experiencing work emotions like grief, regret and guilt. During the intervention they would say things like “I thought I was the only one.” We found they benefited from hearing other nurses tell similar stories to their own, which normalized their feelings.

Tessie October: We need to do more work that allows people to have a space to unpack these emotions that you describe in your narrative work. When we don’t do this emotional work with staff, we end up with burnout. There are some things hospitals are doing, like Schwartz Rounds. We also have debrief sessions with our chaplain after an emotionally challenging death of a child.

Part of it, truthfully, is that there’s a protective mechanism we invoke to be able to do the work we do. We try to stay a little bit distant. When a child dies, if you’re the ICU attending, you still have 40 other children who are expecting you to be on your game.

We need to normalize the fact that we have these emotions. Medical staff experience repeated work traumas. We need to make a safe environment for people to be able to emote, and talk about these things. It’s not institutionalized until every staff member has their own process that they can use to do this work. This is an area we need to address as a field.

BLOOM: What do you hope other intensive care units take from the study?

Tessie October: That conversation matters. And that sometimes just slowing down and pausing can make a real difference in the family’s ability to hear and understand the information you’re giving. The motivation may be to rush through certain things, and we have to remind ourselves that these are emotional, life-changing decisions. Responding to emotions is equal in importance to providing technical, medical information.

BLOOM: To some degree, isn’t empathy subjective? Isn’t it possible that one parent would find a statement helpful, and another parent might find it hollow? Was there thought given to studying which words and phrases parents find most compassionate?

Tessie October: That would be a very interesting study to do. We didn’t study that in particular. I think you’re right—some families respond to different words. Our goal is to increase the options that are in the doctors’ tool box, so if they try something and it doesn’t work, they can try something else. What I do in my meetings is I let the family talk. I let them start the meeting and get off their chest what they’re really worried about and, and based on the language they use, they give me a lot of clues.

It’s being present, and being aware, and listening to those clues. One thing we want to do is help doctors recognize statements as emotional. For example, if a family says “There’s got to be something more you can do,” I’m trying to help staff hear that as an emotional statement, instead of as a cognitive statement.

Often, the family is not asking ‘What’s the next phase 1 therapy available for my child?’ They’re saying ‘I can’t believe we’re at this place. I can’t imagine that we don’t have any other treatment for my child.’

BLOOM: Yes, it sounds like the parent is feeling powerless to protect their child. Was any thought given to connecting parents who are going through similar situations? In one of the statements listed in your study, a doctor says ‘I completely understand.’ But how is that possible, unless they’ve had a child in the same situation? I’m wondering if other parents—or a parent in a staff role—could provide additional support?

Tessie October: I don’t know that that’s been tested. I know some hospitals are testing parent navigators, where a parent is on staff to provide continuity for families. Part of the problem is that parents often participate in meetings with different providers who give them different messages. A lot of times these meetings happen impromptu. We do offer to have families speak to other families going through similar things, especially around heavy decisions such as tracheotomy placement. We’ve also created resources in terms of videos that are parents talking to parents.

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'I want a job where I play with toys and make kids feel awesome'

Photo and interview by Louise Kinross

Lisa Kakonge is a speech-language pathologist with Holland Bloorview's brain injury program. She did her training in Albany, New York, but always planned on coming back to Toronto, and had her eye on working here since high school.

BLOOM: How did you get into the field?

Lisa Kakonge: I knew about speech pathology from the time I was four years old. I have a brother one year older, and he had a severe phonological disorder. All of his sounds were funky. I used to be his interpreter when we went to the playground. When he was five, he started speech therapy and I would go to his weekly sessions with my parents. Back then, I thought it was so cool that he would play with a Mr. Potato Head, and come away sounding better. And when he sounded better, I could see he would feel better. I thought 'I want a job where I play with toys and make kids feel awesome about themselves.'

BLOOM: Which kids do you work with?

Lisa Kakonge: They can be babies up to 18 years old. Most of them have acquired brain injury through stroke, meningitis or a trauma, like a fall from a bike or a car accident. Some of our kids have seizure disorders.

BLOOM: You said you're in your 14th year at Holland Bloorview. Was this your first job after school?

Lisa Kakonge: I went to school in Albany, New York. After graduating, I worked for six months for the Boston school system. But I'd always had my eye on Holland Bloorview. I used to take the Sheppard bus to go to Ikea, and I'd see signs for the hospital. Before graduate school, I had worked with a private company as a speech therapy assistant, and they specialized in traumatic brain injury. I wanted to do something related to kids and rehab. Three full-time jobs came up here at the same time, and I applied for all three and was offered my choice. I chose outpatient brain injury.

BLOOM: What kind of therapy do you use?

Lisa Kakonge: It varies greatly. Our inpatient cases start with a five-day assessment looking at general areas of strength and need with speech production, language and the interplay between thinking and language performance. We find goal areas such as word finding, or working on motor speech challenges.

BLOOM: Is that for kids who have trouble with the physical mechanics of speaking?

Lisa Kakonge: Yes. We also work on language processing, how they understand and integrate information and being able to express things in a coherent way. A few years ago we moved to a seamless care model so I work with inpatients, day-patients and outpatients.

BLOOM: What is a typical day like?

Lisa Kakonge: I usually have four to five children a day, and based on their age and tolerance, the sessions are between 30 and 60 minutes.

BLOOM: So today I saw you playing with the Fisher Price school bus and plane.

Lisa Kakonge: I choose toys based on client and parent feedback about what they find interesting. Today we were working on the concepts of in and out, up and down, and on top and behind.

BLOOM: Do you usually get down on the ground with kids?

Lisa Kakonge: Yes, getting down to their level allows me to see what they're interested in, and what I can comment on. It's always easier to do these things through play. Today, when we were putting the blocks away, the client said 'away,' which I'd never heard before. That wouldn't have happened if if I had controlled things.

BLOOM: What are the joys of the job?

Lisa Kakonge: Seeing change. Setting goals that are collaborative with the parent and client and actually seeing change over time. We have graduated goals, and I review them every three to four weeks. Being able to show parents 'This is where they started and this is where they are.' And having a conversation about where we go next. It's really impactful to see that change over time.

BLOOM: It seems like acquired brain injury would generate some different emotions in parents compared with the experience of having a child born with a disability. What are the challenges?

Lisa Kakonge: You touched on it. With a brain injury, it's something that is often very new. It's not just the changes in language skills, or changes in the interplay of attention, memory and planning on language, that families deal with—it's the whole picture of grief over what has brought them here. It's that idea of having to grow into the brain injury, and not knowing what the future looks like. These were typically developing children and something happened for them to be here, and that's a lot to cope with, for parents, and even for clinicians.

BLOOM: How do you cope with that?

Lisa Kakonge: I talk a lot with my team. We meet once every week or two, and it's an opportunity for someone to say 'How are you dealing with that particularly big emotional case?'

BLOOM: Why does it help to talk about it?

Lisa Kakonge: It helps because it normalizes your feelings. It doesn't take the feelings away, but it helps you unpack the feelings, so you don't bring that into therapy sessions. I never want my response to how I'm coping to impact the care I'm giving. Most colleagues have had similar situations, and it's an opportunity to be heard.

BLOOM: What are the main emotions you experience?

Lisa Kakonge: Honestly? Grief. And shock. Some cases are terribly shocking and confusing.

BLOOM: Do you have any other strategies for managing stress?

Lisa Kakonge: I'm a good walker. I put my my head phones on and pump really loud music. I used to walk down in the ravine behind the hospital—until I saw a coyote one day. Now I just walk through the neighbourhood—or to Whole Foods. I have two girls who are very busy and rambunctious and we spend a lot of time together at the park and biking. Even after a hard day, it's always such a comfort to know I'm going home. I'm biased, but I have awesome kids, and they are very empathetic. They'll say 'Today looks like it was a hard day.' Then they'll run to make me tea. I'm signed up for the mindfulness self-compassion course with Anna Marie Batelaan and I think that will be really helpful too.

BLOOM: What have you learned from families?

Lisa Kakonge: They have this ability to walk with so much grace in the face of adversity—so much courage. I've learned a lot of patience. When I think about it, the parents who come in often have many children to care for, not just the child here. How they navigate that—caring for the self, for the family system, and are still present for the child here—I don't know how they do it.

BLOOM: If you could go back and give yourself advice on your first day here, what would it be?

Lisa Kakonge: I think I would say 'It's okay not to know. You're going to work from the point of view of what clients and families feel they want and need.' When I first started, I felt really overwhelmed. I felt I've graduated, and I should know everything. But there's a lot of strength in saying 'I'm not sure, but I'm going to find out.' I had a really supportive team, and thankfully there were more seasoned speech pathologists who had put in the time, and had really neat clinical insights. I was never shy to reach out to others, to ask questions and to brainstorm. I would also tell myself to practise work-life balance. I didn't have a lot of that in my early years. I was always conscious of the deliverables of my program. Everything would get done, but it would be because I was working really long hours. Work-life balance is key to ensure you don't experience burnout.

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

Lisa Kakonge: More staffing resources would be wonderful.

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In Baby and Me, parents craft a lullaby for hospitalized infant

By Louise Kinross

When a child is born premature or with serious medical problems, parents’ plans go out the window. Instead of getting to know each other in the relaxed and quiet safety of their home, parents sit at a hospital crib, unsure of how to interact with the newborn beneath the wires and noisy equipment.

While their baby is in intensive care or rehab, parents may miss some of the most basic bonding experiences.

For example, a mother attending Holland Bloorview’s new Baby and Me program, noted that when she lay down beside her child on a mattress in the program, it was the first time she’d ever snuggled in bed with her baby. The baby was seven months old.

One morning a week, inpatient babies up to 18 months and their moms or dads meet in Holland Bloorview’s music therapy room for 45 minutes of creative arts psychotherapy, which includes art- and music-making.

“We started the group to facilitate creative and playful opportunities between caregiver and child,” says Eunice Kang, a registered psychotherapist and music therapist at Holland Bloorview. “We offer a means of coping with trauma and help parents connect to their infants through song writing and creating art. It’s an opportunity to stop and take stock of their journey so far—to talk about the difficulties and celebrate the achievements.”

The session begins with parents playing soothing bells of different pitches. They then choose to compose a personal lullaby for their child, called a "song of kin," or paint and decorate a piece of canvas to honour their baby.

Eunice and Andrea Lamont, also a registered psychotherapist and music therapist, learned the "song of kin" technique from Dr. Joanne Loewy. Last year they attended Dr. Loewy's continuing education program in the neonatal intensive care unit at Mount Sinai Hospital in New York City. They then worked with Shawna Perkins, Holland Bloorview's therapeutic playroom coordinator and art therapist, to adapt the techniques for the growing number of infant patients we see here.

For the lullaby, parents are asked to choose a favourite family song, then work with Eunice and Andrea to create meaningful lyrics for their child. “The baby has experienced a lot of stress being in new hospital environments, and we know that listening to Mommy or Daddy sing to them will help the baby regulate their emotions and bond,” Eunice says. “While we’re making the lullaby, we listen to the family’s concerns and issues. It’s a quiet time, with no beeping alarm sounds or interruptions, that can also be emotional and cathartic for parents.”

In addition to the lullaby, parents and babies work on their art canvas with Shawna, adding patterns and textures and photos of the baby. At the end, Shawna takes a picture of the child and superimposes it on the canvas, adding the lyrics from the family's lullaby as a border.

The facilitators play instruments to accompany parents singing their lullabies. “With their consent, we record the lullaby and send it to their e-mail or phone,” Eunice says. “Some of the families tell us they cry the first time they hear it, and they cherish the moment they share it with the baby.”

For more information on the Baby and Me program for inpatients, please contact Shawna Perkins at ext. 6268. This project is funded by donors through Holland Bloorview Kids Rehabilitation Foundation.

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'We validate the diverse experiences siblings have'

Melissa Ngo (far right) and Daniel Scott (second right) run Holland Bloorview's sibling workshop. Here they appear with Liam Durack and Brittany Rogers, who are adult siblings that participated in a Young Carers' Forum hosted by the Change Foundation last year.

By Louise Kinross

“What should I do if a sibling might embarrass [me] and it might affect [my] friends?”

“What do you do…or say to someone who says ‘you’re so r-word,’ or refers to someone as autistic who isn’t?”

“Have you ever been really angry with your sib?”

“How do you participate in their care?” 

These are a few questions children with a brother or sister with a disability asked adult siblings at a workshop in May at Holland Bloorview.

“The purpose is to connect siblings of people with disabilities so they can have a network and can ask questions in a safe space,” says Melissa Ngo, a family support specialist who has a brother with a disability. “It’s an opportunity for children to discuss with their parents any worries, concerns and positive experiences they have.”

Twenty-five years ago, June Chiu, then a parent of a child with a disability, got together with two other parents and asked Holland Bloorview staff to host an event for siblings and their parents—which they did. “We just intuitively felt that the sibs in our families needed a forum, a safe space to identify and find common needs and support,” June says. “Like parents, sibs needed support—a place to talk, ask and learn that their feelings and questions are okay. It was an opportunity for parents to be more aware of sibling needs, especially when planning for the future.” 

Later in the 1990s, June Chiu became a family support specialist at Holland Bloorview and formally launched the annual sibling workshop. It’s now run by Melissa and Daniel Scott—staff who are both siblings themselves.

“My whole life was impacted, and continues to be impacted, by being a sibling of someone with a disability,” Melissa says. “A lot of the decisions I make, and a lot of my personal characteristics and personality, have been shaped because I’m a sibling.

“As a young child, I grew up learning a lot about caring and compassion—and understanding what that looks and feels like. I also know what barriers look and feel like to my family. I’ve always been very aware of other people, and I see that as something that’s an asset. Now, as an adult, the severe lack of systemic supports from the government, and health care, as my brother grows older, is something that I worry about. I think the system needs to do better in supporting adults with disabilities and their families.”

The two hour sibling workshop in May drew 32 children, adult siblings and parents. It began with a short presentation from the Young Carers Program on some of the upsides and challenges of having a sibling with a disability. Then children aged seven to 14 broke into one group, and adult siblings and parents into another. The children “do activities and discussions that centre on the family, and have a safe space to talk for about an hour,” Melissa says. At the same time, parents in the other group have an opportunity to ask adult siblings questions. Then the younger participants rejoin their parents, and ask the adult siblings questions.

“It does get emotional,” Melissa says. “Parents are worried about the same things that sibs are worried about. Parents are very aware that sometimes they have to spend more time with the child with a disability, and they worry about their other children.”

Organizers select a diverse panel of adult siblings—age-wise and in terms of the diagnoses in their brother or sister. They also include adults whose siblings have died. “I think the great thing about our workshop is that we tell everyone right from the get-go that we’re not going to 'rose-colour' any of the information.” Melissa says. “It’s very honest and from the heart. I’ve heard of other workshops where they don’t talk about the hard or challenging things sibs go through. They try to encourage one way of thinking. We validate the diverse experiences siblings have.”

Children like meeting others who “get” their situation, Melissa says. “The most impactful thing I’ve heard from parents is that they will continue the discussion at home. Because we’ve opened the conversation, they may have learned something new about their child that they want to keep talking about.”

Some parents keep a question box at their house and encourage their children to write down anything they want to talk about and put it in the box. “Parents can encourage children to say things that might be really hard for them to say, or that they might be afraid to say,” Melissa says. It's good to check in regularly with kids to ask if they have questions, ideas or feelings about having a sibling with a disability.

Siblings may want to be involved with their brother or sister in different ways, and that can change as time goes along. It's also great to bring the child with a disability into discussions. “We also encourage parents and caregivers to model self-care. Because when you take time to do things you enjoy, siblings can see that they don't have to feel guilty about doing the same thing, especially in the future.”

Melissa and Daniel have applied for a No Boundaries grant that would support a program for siblings that would be run at the same time as Holland Bloorview’s education workshops.

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Being kind to yourself makes you a better clinician

By Louise Kinross

Anna Marie Batelaan is a social worker at Holland Bloorview who works with children who have a brain injury as a result of trauma or illness—and their families. She provides emotional counselling and helps families connect with resources. “We recognize the whole family is impacted,” she says. “With acquired brain injury, the child is usually developing typically, and the brain injury has turned their life upside down.” One of the tools Anna Marie uses with parents is mindfulness meditation. She and social worker Dagmara Urbanowicz are bringing a new mindful self-compassion program to staff in the fall.

BLOOM: How did you get into this field?

Anna Marie Batelaan: I’ve always been interested in giving back and helping others. My first social work jobs were working with young offenders in a group home, and working with homeless women. My dad was an engineer with the National Research Council who made aids for people with disabilities. He worked closely with what was then the Hugh MacMillan Centre. My sister is a social worker and my brother is a fireman. We do a lot of helping in my family.

BLOOM: How would you describe your job?

Anna Marie Batelaan: Social workers do a lot. We’re there to help navigate young people and their families through the system. We help them understand the impact of brain injury now, and what they need to think about as they get older. We look at the big picture of things. We do a lot of emotional counselling to help them cope and adjust and move forward with their lives. We also provide them with funding resources and supports in the community.

BLOOM: What are the joys?

Anna Marie Batelaan: I find it extremely rewarding when families and young people come back to tell me how they’re doing. Last summer, one of my first clients, who I saw here when he was nine, came back at age 27. He wanted to visit and tell me what he was up to, and was thinking about volunteering here. It’s seeing young people and their families find a way forward that is still going to bring them a lot of happiness and joy. It’s being able to be a small part in their recovery at a time when they need help.

BLOOM: What are the challenges?

Anna Marie Batelaan: In health care we’re often asked to do more with less, and that can be a challenge when you know that what you’ve done in the past was really successful. For example, we used to be able to visit people in their homes and spend the time they needed to help with their adjustment on the outpatient side. Often it's six to 12 months after going home from hospital that people realize the brain injury is not going away. Home visits allowed us to see more easily how they were coping, and were very appreciated by the families. But when we changed our model of service delivery, we stopped doing home visiting, because we’re so busy with inpatients.

BLOOM: What emotions do you experience on the job?

Anna Marie Batelaan: The whole wide range of emotions. We’re here for the tears and sadness, but also for the laughter and excitement and joy of progress. Sometimes frustration comes up as well.

BLOOM: How do you cope with the emotional side of work?

Anna Marie Batelaan: I have strong mindfulness and compassion-based practices. I’m in my 10th year of mindfulness, and I’ve done self-compassion practices for three years. That’s helped me to really be there for myself. I’ve learned how to soothe myself in difficult emotional times, but still be present for clients and families. I’m not perfect. We all ‘fall off the cushion,’ as they say. But you’re kinder and gentler to yourself, and you’re able to get back on.

BLOOM: What are the practices that you do?

Anna Marie Batelaan: I do a formal daily practice of sitting on a cushion and doing a breath practice or a body scan or a loving-kindness meditation.

I think I’m getting much better at informal practice, where I catch myself in the moment and stop and take a breath and ground myself. I often do a three-minute breathing space in the transition between one client and another, so I can let go of what I was working on with one client, and be set up to work with the next one. There’s research now showing that clinicians who stop and do that have better outcomes with their clients and families, even though they aren’t aware that you’ve done it.

BLOOM: You and Dagmara recently took some training. Can you describe that?

Anna Marie Batelaan: It’s called Intensive Mindful Self-Compassion Teacher Training, and it was the first time it was offered in Ontario. It’s an international protocol started by Kristin Neff and Chris Germer. It’s training to lead an eight-week group where you teach compassion-based practices. These are compassion-based practices that involve mindfulness, self-kindness and common humanity.

BLOOM: How would you describe each component?

Anna Marie Batelaan: I like Jon Kabat Zinn’s definition of mindfulness. He says it’s paying attention, with intention and without judgment, to the present moment. It’s not getting caught up in worries of the future or thinking about the past.

Self-kindness is how we approach ourselves with more kindness and appreciation and care. The common humanity is that we’re not alone in this. All of us struggle, we all have challenges, and when we can recognize that, we can allow ourselves to take better care of ourselves.

BLOOM: Have your thoughts about disability changed in the 18 years you’ve been here?

Anna Marie Batelaan: I don’t think they have changed much. My views were shaped by my dad, who worked with so many people with disabilities. He would show me paintings by people who had painted with their toes, and I’d say ‘Wow, that’s so cool.’ He came into my grade school for Show and Tell and talked about the aids he designed. One was where you blew threw a straw to type.

BLOOM: What have you learned from the families you work with?

Anna Marie Batelaan: Families continue to teach me every day. They’re amazing in how resilient they are and how they take care of their children and find a way forward. If I was in their shoes, would I have the same amount of resiliency?

I like it when we do groups with families and they can share and learn with each other. The best way forward for families is to hear from another family: ‘This is the way you might want to try it.’

BLOOM: Do we run a group like that?

Anna Marie Batelaan: Right now there’s a parent group that runs at the same time as our Helping Hand constraint-induced camp for kids. It brings together inpatients and outpatients—and even outpatients from five to 10 years ago. We have themes and discussion, but the best piece is the learning they get from each other. It’s neat. They walk away feeling like there are common threads in all their experiences. They come from all over Ontario, and often stay in touch on e-mail or with FaceTime and texting.

BLOOM: Why did you decide to bring mindfulness to our parents and staff?

Anna Marie Batelaan: I’d been practising on my own and found it so helpful that I wanted to share the benefits. Five-and-a-half years ago I began a mindfulness group for inpatient parents. It ran for about five to six months and then staff starting asking me if I’d do one for them.

BLOOM: What do parents and staff tell you they get from these sessions?

Anna Marie Batelaan: They say they’re better able to be present, to take care of themselves, to regulate their emotions and make better decisions. Research shows that when you’re present, you’re happier.

Research also shows that 47 per cent of the time we’re not focused on what we’re doing, and when we’re not focused, we’re pretty unhappy.

BLOOM: Why is mindfulness and self-compassion important for parents of children with brain injury?

Anna Marie Batelaan: A lot of parents put their child first and they’re way down on the priority list, to the point that they’re not taking care of their basic needs—sleeping, eating well, or even taking breaks from the bedside. Mindfulness and self-compassion can help them start looking at what’s happening to them, and to understand that they need to take care of themselves in order to better take care of their child.

BLOOM: How have you changed as a clinician since you began mindfulness?

Anna Marie Batelaan: I think I’m calmer. In the past, I felt my emotions could take over sometimes, and I felt more anxious. Now I can be more present for myself and others. I'm better able to look at what I need to accomplish in a day, and I prioritize my work easier. I feel I can be a better listener and speaker—as far as choosing what I say and how I say it. I think I’m a better colleague. 

BLOOM: Can you talk about the new mindful self-compassion group for staff?

Anna Marie Batelaan: Compassion is one of our founding values at Holland Bloorview. But to be compassionate, we have to complete that circle of compassion by being kind to ourselves. That’s where it starts.

The course will be three hours a week over eight weeks. We’ll look at how to work with our inner critic, how to become our closest ally, and how to better be able to be there for our clients, colleagues and our own families.

BLOOM: Can you describe one of the practices?

Anna Marie Batelaan: One of the ones I like best is the self-compassion break. You learn how to work with a small difficulty and, as you gain the skills, you can apply it to the bigger challenges in your life. It’s a way to deal with the pain that all of us carry within ourselves.

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I feel joy

The following is a found poem created last night by the narrative group for parents of children with brain injury at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child..." In the narrative group, parents read, write and draw about parenting their children as a way to build self-compassion, resilience and peer support. While parents attend the group, their children participate in a writing club at the hospital.

I feel joy

I feel joy when my child has fits of laughter.

I feel joy when my child is getting better, is smiling, is eating well and is hugging me and saying 'I love you, Mommy!'

I feel joy when I see my daughter happy. I hope she lives happily every day.

I feel joy when my child laughs out loud... and smiles with her eyes.

I feel joy when my child smiles, gives me a giant hug and a squeeze, blows me kisses and says 'Mommy, I love you.'

In speaking about how life changed after her child suffered a brain injury, one parent said:

"We were a typical family who were sort of wanting to live the right way. We wanted our children to attend the right school, so we moved to a better school district. We were wrapped up with our neighbours and with moving and with progressing. We had all of these plans down the road. In six months there was a birthday party, and in a year a vacation.

Looking back, these were things that didn't matter. 

When your child is very ill and you could lose them, none of that matters. No amount of money in the world, or success in the world, can trump health.

I can't predict tomorrow, I can only predict today. It simplifies life. It means letting go and accepting what is. We have now."

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As a child, 'my strength faded away'

By Terrence Bishundayal

At the age of six I began losing my childhood.

In 2002, my family came from Guyana to Canada. I started first grade at North Kipling Junior Middle School. Immediately after, I noticed that I had trouble climbing the stairs. I would lose my balance and fall. My teacher suggested I walk on the opposite side of the stairs, while the class walked on the right, so I could take my time.

My legs hurt when walking long distances and I would ask to be lifted. I didn’t realize it at that age, but my muscles were getting stiff. Sometimes when I was walking I would trip.

In gym class, I couldn’t keep up with the other kids doing sports. My gym teacher told my parents she thought my shoes were too big. At the time, none of us thought it was anything serious.

By the end of Grade 1, I was using the elevator.

My dad took me to the doctor and he ran tests and referred me to SickKids. I had surgery which determined that I had Duchenne muscular dystrophy (DMD). This is the continuous weakening of all of the body’s muscles over time.

To be honest, as a kid, I didn’t really understand it.

By the spring of 2003, I was using a manual wheelchair. This confused the other students. “What’s with the chair?” they’d ask. “I’ve seen you up before.” They weren’t mean, but more curious.

The same thing happened when I was given easier things to do in gym class. If we were playing basketball, a hoop was put on the floor and if I got the ball in the hoop, that counted as a goal for my team. The students wanted to know why that just applied to me.

“I have a leg problem,” was my response. That was all I knew about DMD at the time.

In Grade 3, I was prescribed Deflazacort, which is a steroid medication taken by patients with DMD. My parents told me “If you take these pills, your muscles will be better.” I thought that meant I’d be like the other boys. But while they were getting stronger and able to do more physical activities, my strength faded away.

I was living with my cousins at the time, and one day we noticed that they were all growing taller and I wasn’t. It was the first time I noticed I was shorter than other kids. I didn’t know Deflazacort would affect my growth, and I wanted to be tall like the others. I was clearly upset about this and I became more emotional and sensitive.

The school had a large playground outside but I couldn’t play during recess. My wheelchair was hard to push over grass and a couple of times I flipped over. Many times I’d just sit by the door so when the bell rang I could get back to class quickly. In the winter, my wheelchair could get stuck in the snow or slide on ice.

In Grade 4, the teacher picked other students to help me at recess. She would assign one boy and one girl. I wanted to hang out with the guys, but often the boy assigned to me would say ‘I’m going over here to play basketball,’ or would just throw me off to the girl.

Then my homework started to pile up. My hands got sore when writing, and I couldn’t work at the same speed. I’d often do homework from 4:30 to 9:30 at night, and sometimes I still had to get up early the next morning to finish it. I didn’t know how to tell my teacher what was happening. I was the kind of student who didn’t want to show up at school with incomplete work.

Eventually I got frustrated and cried, and my mom called the teacher. After that my homework was reduced. For example, instead of 30 math questions, I’d do 15, or instead of a full page of journal writing, I’d do half a page.

Students started to tease me. I was gaining weight because I wasn’t getting as much exercise in my wheelchair. Nobody had told me anything about wheelchair sports. They called me fat and an emotional wreck.

Kids can be mean, and they didn’t understand what was happening to me. I did report it to the teacher when I thought a student was going too far, but it involved many students.

In Grade 5, the teachers began planning a three-day trip to Ottawa. I was excited to go, and it never occurred to me that I wouldn’t be able to. But I had to stay home because they didn’t have knowledge about how to do my personal care, and my mom was working. I was very upset about that.

If I was talking to a younger student with DMD now, I’d say to always report teasing to your teacher, no matter how small, because it can get worse if you don’t.

When you feel down or sad, it’s best to talk it over with an older adult who you trust. It might not be your parents, because they may be working, or you may be scared to tell them. When I tried to talk to other classmates about what I was going through, they didn’t understand. Their greatest worry was what they were going to do at recess, or getting a snack.

I was a patient at Holland Bloorview, and sometimes I was invited to attend events with other kids with DMD. But I didn’t want to take part in any of that. I didn’t want to talk about the pain I was feeling, and I didn’t want to look at someone older and to think “this is what will happen to me.” It’s kind of ironic, but I was scared of people with disabilities, because everyone was able-bodied at my school. I was the only one who was different.

My elementary years weren’t all bad, but many times I didn’t feel good. It was hard to have a disability when the other 800 children didn’t. Whenever I felt angry or sad, I would try to get back to a calmer mood. I never had any counselling. No one ever told me if you feel angry, there are things you can do, like listening to music.

Growing up I thought of myself as a storyteller, whether telling real stories or fictional ones. I was very big on movies, and I wanted to learn how to review them. I’ve just finished my second year in journalism at Humber College, and I’m learning how to tell stories in many different ways.

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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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'It's nice to know we're not alone'

Photo by Rachel Friesen

By Louise Kinross

Rachel Martens is hosting a CP-Net webinar on Thurs. Feb. 8 from 12-1 p.m. called Finding Community: Social Media for Families of Children with Disabilities. Rachel, who lives in Calgary, is mom to Luke, 11, who has mosaic trisomy 22, cerebral palsy and autism. She is also a family engagement facilitator for CanChild’s Facebook group Parents Partnering in Research. I met Rachel at a conference and she is a wealth of information on how to use social media to connect with families, advocate on disability issues, and share practical and emotional parenting support.

BLOOM: What are the benefits of social media for parents of children with disabilities?

Rachel Martens: I spent time on Twitter the other night on a healthcare leader chat, and they were talking about the role social media plays in mental health. They weren’t talking specifically about disability, but I think what they said was just as insightful for families like ours. Social media is a way to find community and find health information. It brings more people into your world, and gives you another tool to work with, in tandem with your clinical team.

It’s nice to know we’re not alone, especially in the rare disease community. This society doesn’t have a dialogue for struggle, and if your life doesn’t fall into the norm, it’s nice to have people who are experiencing the same thing. It’s a community where you can share the small and big victories.

Writer Brené Brown talks about how storytelling is ‘data with a soul.’ I can mentor fellow Facebook friends who have children with a similar diagnosis, and I can also look at the victories other parents have, and that gives me hope for my kid.

BLOOM: How has your personal journey with Luke been impacted by your participation on social media?

Rachel Martens: My son was born just before social media started taking off. When I first got a diagnosis, I didn’t even know what a ‘chromosomal rearrangement’ was. I had to go off to Google to see what that meant.

But beyond that,I leaned heavily on the Internet. I found a forum another mom had created at Yahoo News Groups. Then, when Facebook got going, all of those families went over to Facebook.

I got adopted into that community and we watched each other’s kids grow, and talked about challenges we were facing. At the time, there was no model for transitioning into being a parent of a child with a disability. Social media shortened the gap.

BLOOM: For a parent who isn’t active on Facebook, how would they start?

Rachel Martens: There are groups for a wide range of disabilities and groups that are more specific. Different groups feed you in different ways. I would suggest doing a search with the words ‘disability’ and your local region—so I would put in ‘Calgary.’ You’ll find local organizations and groups. You can also expand into reading people’s blogs. There’s one Facebook group that I randomly stumbled upon—called Mommies of Miracles—that is quite large.

BLOOM: I like that one too. What social media channels should parents start with?

Rachel Martens: When I mention Twitter to some parents I get the same reaction—they grimace. Perhaps it’s the idea of limiting your characters. But if you’re trying to tear down walls with advocacy, I’d jump right into Twitter. Many institutions and healthcare organizations have their own social circle on Twitter, and they’re very welcoming to hearing parent voices as well.

BLOOM: What about Facebook?

Rachel Martens: Facebook is a good place to find private corners where you can be vulnerable and share your fears. Many Facebook groups are private, and that’s where I’d start. It’s a place where you can bare your soul with people who understand. While Twitter is great for advocacy, you can get more practical information on Facebook.

BLOOM: Do you have any words of caution for parents?

Rachel Martens: It’s important to remember that you may have to do some searching to find a community that feeds you in the right way. You’re not married to any group. If you join a group and it doesn’t feel right, drop it and keep searching. Also, when you come across health information, it’s good to bring it back to your care team, to make sure you totally understand it.

I encourage parents to ask themselves ‘What do I want?’ from Facebook. Who do you want in that environment around you? Then adjust your privacy settings accordingly. It’s good to know, too, that Facebook just put out an option where you can take a break from seeing a person’s posts for a week or so.

I think you also want to do some self-checks, to make sure you’re not avoiding things you could be doing in the outside world, beyond your phone.

And you may want to stay away from certain content that could trigger you in a negative way. So, for example, I belong to a pediatric hospital group, and sometimes I learn about children who have passed away. That could be very triggering for some people, so you need to set healthy boundaries.

Social media is just one piece of the mental health and information exchange puzzle. Make sure you have other sources—like books or counselling—to feed your soul.

BLOOM: Can you describe the Parents Partnering in Research Facebook group you belong to that’s run by CanChild?

Rachel Martens: It’s a Canadian community of about 150 parents and professionals that talk about different aspects of disability-related parenting. The original intent was to bring parents and researchers together so they could work to socially understand each other. Due to the time limits of clinics, there are often knowledge gaps where you can only get so much of a parent’s story.

Parents and researchers both tell us ‘Wow, I understand what you do, or what you go through, a whole lot more after spending time here.’ It’s a great way for parents and researchers to brainstorm ideas.

BLOOM: Who is the group open to?

Rachel Martens: Canadian parents. We also have some researchers from other countries—like Holland and Australia.

To find out more about Parents Partnering in Research, e-mail Rachel at lukesbloggermom@hotmail.ca and put "Bloom article" in the subject.

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Raising a disabled child in an abled world takes a toll

By Louise Kinross

Today is Bell Let’s Talk day and we want to join the dialogue by talking about mental health and parenting children with disabilities.

Over the last decade, studies show that parents of children with a range of disabilities like cerebral palsy, autism and Down syndrome have higher rates of depression and stress than other parents.

This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and carers of children with disability.

Consider some of these contributing factors. 

Parenting a child who is devalued and marginalized in our culture can be heartbreaking.

Parents of children with disabilities often have to fight to have their children included in everyday activities and regular school programs. Advocacy is time-consuming and emotionally exhausting. It's sad when your child struggles to make friends.

Parents may not be able to get the therapies their child needs covered publicly. Raising a child with a disability costs more. Often times, one parent needs to be at home.

Some parents have experienced many traumatic, life-and-death situations with their child. Others have been with their child through dozens of painful surgeries and gruelling months of rehabilitation.

Lack of home-care nursing and the need to care for a child around the clock can be physically exhausting. See Parents of ventilated kids risk own health due to sleep loss.

It’s sad when many people don’t delight in your child the way you do, and see their beauty, value and wholeness.

Recently, we’ve seen some exciting studies about interventions that can reduce stress and depression in parents like us. For example, in the last year we’ve written about three CAMH studies showing the benefits of mindfulness, self-compassion and acceptance and commitment therapy. The most recent: Accepting emotions reduces depression and stress in parents and Self-compassion may fuel parent resiliency. In 2014 there was this Pediatrics study: Peer-led groups treat distress in parents of kids with autism.

Holland Bloorview's Dear Everybody campaign aims to help the public understand the experiences of disabled children and their families, and to reduce stigma.

In light of Bell Let's Talk, I asked parents on our BLOOM Facebook page this question: “What would you like the world to know about mental illness and parenting children with disabilities?”

Here are some of the responses (edited for space).

Post-traumatic stress disorder is now recognized in first responders. Living through repeated life-and-death situations with your own child takes a toll.

The world should know that we worry constantly and that it can be exhausting. I love our daughter to death and she brings us so much joy, but the stress and worry about her future can be debilitating. Except—it actually can’t be, because you just carry on. You have no choice. I worry that this reality takes a toll.

Hopes, dreams and fulfillment for our children are waylaid for doctor appointments, constant phone calls about denied necessities, hospitalizations, Emergency visits, sleepless nights, loneliness, lack of freedom, but most of all guilt. Did we do enough? What did we forget? Are we paying enough attention? The list is endless, but at the top of that list should be FEAR. Who will be there to carry on for our child when we can’t?

I have never gotten over the trauma of our daughter’s early birth and the subsequent turn she took after birth that led to her disability.

We may always look like we have it together, but placating us with ‘You seem to be very strong’ pushes us further into the dark and away from help. We need proper assessment.

Don’t leave it till we fall off the rails. Studies show that parents like us have higher rates of depression and anxiety than other parents.

I took a physical for insurance and was asked ‘Why are you on an anti-depressant?’ I simply stated: ‘I’m a special-needs parent and I’m always advocating, praying, teaching, learning, and I must cope somehow.’

There is the everyday worry I have for her health and wellbeing, both physical and mental. I constantly worry about what happens to her in the future. Will I be well enough to take care of her, or will she be able to live a somewhat independent life? Oh, and let’s not forget the worries of possible abuse of my girl—physical, mental and sexual. Our lives are mentally exhausting!

Please leave a comment about your experiences with depression and anxiety and strategies you use to help yourself stay healthy.

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