Omar says brain injury has turned his shy personality bubbly

By Louise Kinross

Rehan Siddiqui tells the chilling story of how his son and daughter were hit by a car that went through a red light. “She hit both kids going 60 km an hour,” he says. “How could the driver not realize the light was red? There was nothing wrong with the signal.”

Rehan, who sleeps inches away from his son Omar’s hospital bed at Holland Bloorview, says that Omar suffered a severe brain injury and was on life support for 19 days. He spent two months in acute-care, and has been here since January.

Omar, 14, has a slightly different perspective. “It’s a great story to tell my kids,” he says with a smile. “It was like one day I fell asleep, and the next day, I woke up in a wheelchair in this hospital.” The other thing he woke up with, he says, was a new personality.

“Before, I used to be really shy and quiet. I would never crack jokes. I was never brave enough to raise my hand up to answer a question in school. When we did presentations, I wanted to go last.”

Now, “my family says I can never stop talking. I’m always cracking jokes, and I like acting. 'Reporting live,' he says, holding a mock microphone, 'right now, I’m doing an interview with this young lady.'”

When Omar is discharged in two weeks, he says his first order of business is to put together a video for his YouTube channel. “I want to tell the story of my accident and recovery. Bloorview said it might put it on their website for other kids to see.”

Child-life specialist Amarens Matthiesen says Omar has been a great support to other children on the unit.

For example, when Omar encouraged one boy, the patient smiled for the first time. “I said ‘Oh hey, I was just like you. I was sound asleep for a month, and I needed to be in a wheelchair. But look at me now. I can jump. I can run.’ I gave him a lot of motivation.”

Omar used to want to be an architect. “I love to build stuff, and me and my father do handiwork around the house. But I changed my mind since my accident. Now I want to become a YouTuber when I’m older.”

Omar says his best advice for rehab staff is to have fun with patients. “I think most are very good at having a sense of humour, and joking around. Some are really serious, which makes me feel a little uncomfortable.”

Omar says the hardest part of rehab was when his favourite child and youth worker injured herself, and was off work. “She was a beautiful, caring woman who I loved. She would push my wheelchair everywhere, and she would do anything to make me laugh. We had really funny jokes. We were heart to heart.”

Omar is excited about returning to school. “He’s a miracle child,” his father says.

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Hope: 'We cannot take it away from parents'

By Louise Kinross

Imagine coming to the scene of a car accident and being told it’s your child that’s been hit. But your child is not there. She's been taken to the trauma centre, a 30-minute drive away.

Or entering a room and finding your teen unconscious from a self-inflicted injury.

Or hearing a code blue called after taking your child to Emergency with what you thought was the flu. He's suddenly developed a life-threatening illness.

For almost three decades, Holland Bloorview family therapist Caron Gan has heard hundreds of stories from parents whose children suffered a brain injury as a result of unexpected trauma or illness.

“One of the most important things I’ve learned from working with families is the power of supporting hope,” Caron says. “We cannot take it away from parents. Hope is what helps parents keep going for their child. It helps them to catch their breath, so they can be at their best for their child, and be active in their care.”

According to the National Child Traumatic Stress Network, 80 per cent of parents who witness a child’s accident, self-injury or sudden, serious illness experience symptoms of traumatic stress. For about 20 to 30 per cent, these problems will persist in a way that affects everyday life.

“I see a range of responses,” Caron says. “Some parents need to talk openly and candidly about how awful or horrific the experience was. Then I have parents who are not yet ready to talk. It’s way too painful. Avoidance is a common feature of traumatic stress. I know underneath, they’re all experiencing high levels of distress, but coping with it differently.”

Parents often struggle with sleep. They may have trouble falling asleep. They may have nightmares, or wake up in terror, recalling how they found their child, or what doctors told them at the hospital. “They remember every word and detail, and when they describe those earlier experiences, it’s seared into their memory,” Caron says. “Common things I hear from parents are that they were told their child will not walk, or talk, or be able to go to school like they did in the past. Some parents are even asked about organ donation.”

Supporting parent hope is essential, Caron says. “My role is to gauge where the parent is at, and to walk alongside them in that journey. It’s not uncommon for a distraught parent to say ‘I don’t want to hear anything about my child’s brain injury unless I know he or she will have a 100 per cent recovery.’ I've learned that if I don’t hear what that parent is saying about how they want to remain hopeful, and launch into education about what can happen after brain injury, I’ve lost that parent. That parent will have difficulty opening up and trusting me to have further conversations.”

Parents’ readiness to accept their child’s current situation is a process that can’t be rushed. Hope is fluid, Caron says, and changes over time. “Initially, their hope may be that their child will live, and they are so relieved that their child survived. Then it may move to hope that my child will recover fully from their injury or illness. That may morph into hope that my child will make gains in rehab, will walk again or return to school, or adjust to their new normal. It changes from hope for survival, to hope for a full recovery, to hope for the child to live a good life, in spite of their illness or injury.”

Caron embraces the journey. “It’s not something I would try to change by giving a blunt reality check, or telling them what the literature says about outcomes. Families need time to slowly absorb the information, and their hope narrative will change over time.”

Caron says there are variations in how children heal from brain injuries, and offering the range of possibilities helps parents. “They want to know recovery can range from worst-case to best-case scenarios, and that there is no crystal ball. They want honesty from their healthcare providers, but the way it’s delivered can either shut them down, or help them hear what’s said.”

Knowing that most parents in their situation experience depression, anxiety, irritability, guilt and blame helps to normalize their feelings. “When I show parents a handout about what we call pediatric medical traumatic stress, I often hear a sigh of relief. They’ll say ‘You mean I’m normal?’ They need to be given permission to feel what they feel, and to know that it's okay. Acknowledging your feelings doesn't mean you are giving up hope, or will stop fighting for your child.” 

Caron shares tools to help parents calm their symptoms of distress. It may be teaching grounding strategies if they're having flashbacks, to remind them that they aren’t reliving the event. For example, they may learn to name five things they see, hear, feel in their body, and smell, so they know they’re not “back in that nightmare.” They may be taught deep breathing exercises, to visualize a calm place where they feel safe, or to track their emotions in a journal.

Telling their story, in a guided way, is an important part of healing. “I really listen carefully, and with compassion, when families share the details,” Caron says. “They need to reprocess what they’ve been through, otherwise the distress gets locked in the emotional memory of their brain, and can be reactivated when they least expect it.” For example, when they hear a code blue on the unit.

Caron keeps a celebration board in her office where former inpatients have posted graduation pictures. “It helps to cut through some of that despair or fear of hearing the worst-case prognosis. I can talk about how these young people got to know their brain injury, and how it affects them. That these young people had hoped for 100 per cent recovery, but they all had some persisting effects. However, they learned strategies to help them manage those effects, graduate from school and live a good life worth celebrating.”

Acquired disability happens out of the blue, and changes the child the family knew. In this way, it’s different from learning your child has a disability at birth, Caron notes. “These parents had memories and an imagined future with their child that didn’t involve disability. These parents have to mourn the loss of the child as he or she was.”

Brain injury may alter a child’s abilities and personality. “Psychologically or emotionally, the child may feel to the parent like a very different person. Mourning, and letting go of the child that they remember, is really difficult. And outsiders don’t always make it easier.”

That’s because children with brain injury often have an excellent physical recovery, and the lingering effects on thinking, concentration, memory, personality and mood are invisible.

“People will say ‘It’s so great that Johnny’s walking now. He’s in rehab and he’s going to get back to the way he was.’ That creates more distress for families who are grieving inside. They may be told ‘It’s time to move on. Just focus on the positive, and put this behind you.’ But that type of positivity is almost dismissive of the pain they’re going through. Parents may shut down or isolate themselves when their feelings are misunderstood or minimized.”

Sometimes, changes in a child’s abilities, behaviour or emotions may not show up for years, when some people have forgotten that the child even had a brain injury. Often these changes emerge in the teen years, so it's difficult to know if they're due to the brain injury or to adolescence.

Being part of a support community where other parents understand exactly what you’re going through helps. Caron is working with eight parents at Holland Bloorview and the Ontario Brain Injury Association (OBIA)to co-design a four-hour parent workshop that will be launched here in September, and then rolled out across the province. “It’s a place where parents can be comforted, validated and supported, all while learning from one another.”

Traumatic stress in parents tends to be under-identified, Caron says. “There may be a tendency to dismiss the severity of trauma for parents. People may think ‘parents weren’t the ones who went through the traumatic event—it was their child.’ We know that these events have a huge impact on families.”

Clinicians need to remind themselves that they often don’t have the full story of what a parent experienced before arriving here. “If the parent is irritable, or questions staff around what we’re doing, we can’t take it personally. We know from narrative groups with parents that many had to take their child to multiple Emergency rooms before anyone would listen to them. 

“Sometimes, when parents are reactive, or presenting with high stress and anxiety, we need to take the time to hear what their fears are. Learning their back story helps put a different spin on it for us, as clinicians. It’s not about us. It’s about the parent needing to ensure their kid isn’t going to fall through the cracks, like they did before.”

You can register for the OBIA parent education and training program, or, for more information, e-mail Caron at cgan@hollandbloorview.ca.

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With Aicam on the case, hospitalized kids have fun

By Louise Kinross

Aicam Chuong has been a nurse at Holland Bloorview for over 30 years—first as a student, then working with children hospitalized here with complex medical conditions and acquired brain injury related to trauma or illness. She’s seen the hospital through four name changes and two sites. A patient recently dubbed her a vampire for the precision with which she always draws blood on the first poke.

BLOOM: How did you get into the field?

Aicam Chuong: When I was in high school I volunteered in a nursing home feeding the old folks. One day I was there when a code blue was called on the unit, and I saw doctors and nurses come, and each played a different role. One was starting the IV, one was documenting what was going on, one was giving medication orders. I thought ‘Wow, this is really interesting. I saw the dedication, and I thought maybe I want to do that. I went through a four-year nursing program in Nova Scotia and then moved to Toronto with my family.

BLOOM: Why were you interested in children and rehab?

Aicam Chuong: Children are fun. They recover more quickly than adults and they also open up and tell you what’s going on. A child may draw a picture about being sick and write ‘I want my mommy or daddy here,’ and sometimes parents have to work. I remember calling one mother and telling her: ‘I’ve told your son that you’re coming back after lunch, so you better come back, because I have to tell him the truth.’ I love working with kids. You can console them, you can give them a hug, you can carry them around. You can play games with them to make them happy.

BLOOM: What is a typical day like on the brain injury unit?

Aicam Chuong: I get my assignment of two to four patients and check in to read the report on how their night went. Then I go into Meditech and look at the care plan so I know how to provide care and get the medications. Some of the patients need extra tests or blood work. The kids are here for therapy, so it’s very important that they have breakfast and be ready for therapy on time. Time management is very important, and I want to make sure all of my patients get my attention.

One of the patients said she was going to give me a name, and the name was vampire, because while some nurses didn’t get her blood with many pokes, I always got it with the first poke. We have to have fun sometimes with what we do!

BLOOM: I think vampire is a great name to recognize your expertise with blood draws.

Aicam Chuong: Something that helps us when we have to do invasive procedures is to work with our therapeutic clowns. They can come and distract the patient by doing something funny or singing a song. Our child-life specialists also help prepare our patients through play. That’s how our team works.

BLOOM: What is the greatest joy of your work?

Aicam Chuong: I’m happy to be here and I’m happy I can help the patient and the family. There’s one joyous thing in particular I remember. One of the patients had a head injury and was staying with us from up north. One day he came back from an appointment at SickKids and he and his mother were very upset and emotional. They had been told he probably wouldn’t regain his speech.

But guess what? This patient comes to me one day and says ‘I want to learn Chinese and I want to learn Cantonese.’ I said ‘Okay, let’s start today, right now. I will take my break time—an hour a day—and I’m going to do this for you.’ We started with simple vocabulary and he learned one sentence each day. By the time he left, he could have a full conversation in Cantonese.

One day in the parking lot a Chinese couple was having trouble with paying at the gate and he started talking Chinese with them and they said ‘You speak Chinese, but you’re Caucasian?’ He came back and told me ‘Guess what I just did?’ I said ‘I hope something good.’ He told me about helping the couple outside and it was amazing. His speaking tone was so accurate. His family was so appreciative and always come back to see us when they’re here for appointments.

BLOOM: Was the patient able to speak again in English?

Aicam Chuong: Yes. That was a very joyous story. He gained back his language and he also learned Cantonese.

BLOOM: What is the greatest challenge?

Aicam Chuong: When families come in after their child has had a sudden trauma—like a car accident—or a tumour has been diagnosed. They don’t know what’s going on, or what will happen. The challenge as a nurse is to be present for them, to do active listening and to figure out what they most need help with right now.

BLOOM: I assume some families are very distraught and it must be hard to be on the receiving end of that pain.

Aicam Chuong: We are here for the family. When I’m here, it’s not just my body, but my mind and my heart. The heart is very important.

BLOOM: What about when you’re incredibly busy?

Aicam Chuong: We make time. I would rather have a 10-minute break than an hour if that can help the family. We tell them it’s a partnership. I may suggest spending an hour or two with their son or daughter so they can go have a shower or go down to Tim Horton’s for a coffee.

BLOOM: What emotions come with the job?

Aicam Chuong: Joy, caring, understanding. Sometimes I feel helpless if there’s something we can't do and we have to transfer the patient back to SickKids or another hospital. But when I don’t have the solution to something, I go to my manager and my colleagues for help. We are a team and we stick together.

BLOOM: Do you do anything to manage stress?

Aicam Chuong: I exercise. I go swimming five to six days a week in the community. I do Aquafit and then I go sit in the sauna and get all of the sweat out. If I work a day shift, I swim in the evening. If I work an evening shift I swim in the day. It makes a big difference. I also listen to classical Chinese music. It relaxes my mind.

BLOOM: You’ve had such a long career here. What keeps you coming back?

Aicam Chuong: We can make a big difference in the kids’ lives and that’s what makes me stay. It’s very rewarding.

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

Aicam Chuong: We see so many kids who come to us after trauma. I think we need better psychological support on the unit for patients and their families. Children and parents need someone to spend more time talking with them. If a parent comes out of a meeting where the news was not good, they cry, and they need to talk about it. It’s hard to do that and devote equal time to all of your patients.

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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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'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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Listening to a band or hosting a tea party makes therapy more fun

Photos and interview by Louise Kinross

Carling Robertson (right) is an occupational therapist assistant at Holland Bloorview. She works with children with brain injury and youth preparing for employment. After doing an undergraduate degree in kinesiology, Carling changed course and began working for a trucking company. “I remember the exact moment when I said I can’t do this anymore,” she says. “I had spent months coordinating a huge delivery of hospital beds, and someone forgot to close the back of a 53-foot trailer. One of the beds in a crate fell off, and was super damaged. That broke the camel’s back.” Carling is a dancer and her cousin Deanna was hired recently as a registered practical nurse on the brain injury unit. This is how a client described Carling: "You made my heart so happy. Thank you for always being there for me...through this dark time...With so many other kids to help, you will probably forget me, but I will never forget you!"

BLOOM: How did you get into this field?

Carling Robertson: My degree in kinesiology was a huge factor in wanting to get back into healthcare. I started to research rehab programs because I wanted to make a difference. I figured working with people during one of the most stressful and difficult times in their lives would allow me to do that. It appealed to me because I didn’t want my work to feel like a job, I wanted it to be my purpose. I did the two-year program at Humber, and my second placement was at Holland Bloorview.

BLOOM: What is a typical day like here?

Carling Robertson: Three days a week I’m doing therapy with children who have acquired brain injury. The other two days I work with our youth employment programs helping to coordinate placements, job coach and facilitate community outings.

BLOOM: What’s the greatest joy?

Carling Robertson: It’s the progression that you see in clients, and each child learning different things about themselves. With therapy, we’re working toward specific goals, so it’s seeing them achieve those goals. With youth employment, it’s having participants realize they may like doing a job that they’d never thought about. Or seeing them learn how to write a resume, ask for specific accommodations in an interview, or disclose their disability. No matter where I’m working, joy is being able to be a part of someone’s growth and their journey.

BLOOM: What is the greatest challenge?

Carling Robertson: When I first started, it was the compassion fatigue. I didn’t realize it would hit me so hard.

BLOOM: I imagine it would be particularly hard working with children with acquired disabilities, and their families.

Carling Robertson: I found myself leaving the building, and unable to shut off thinking about clients I’d just seen or others I’d be seeing soon. I’d throw myself into imagining what they were feeling, or what their family was feeling. I would go down a rabbit hole, and then I’d be completely exhausted, and feel like the weight of the world was on my shoulders.

BLOOM: How did you learn to manage that?

Carling Robertson: I have extremely supportive teams in both areas. I was able to talk to them and ask: ‘How have you been able to do this for 20 or 30 years and not burn out?’

They told me this happens when you begin to work in this world. They said you need to know you’re doing everything you can, and the families are getting all of the resources we have to provide. To be there as a support is really important, but if you’re not there completely, they’re not going to benefit from it. It was the old airline analogy about putting on your own oxygen mask first.

BLOOM: So how do you personally do that?

Carling Robertson: I had to teach myself that when I leave the building, I shut it off, and I don’t think about it till I’m back in the building the next day. If I can’t shut it off, I’ll talk to the OT I’m working with, and we’ll talk through it. It’s hard to explain this to people who aren’t in health care, so I’m super grateful to have supportive teams.

BLOOM: Do you do anything physical to manage stress?

Carling Robertson: I’m a dancer and I love to dance if I can. It’s a physical [way] to get out all of the stress, confusion and anxiety that comes up on a daily basis. It helps me get it out of my body.

BLOOM: What have you learned from families?

Carling Robertson: I’ve learned that families are incredibly resilient, and that every family is different. Every family has their own process, and every family copes differently. I’ve learned not to take things personally, because families are in such a difficult situation.

BLOOM: Acquired brain injury must have been a huge learning curve.

Carling Robertson: There’s only so much you can learn from a textbook. In school, everything is presented in kind of a cookie-cutter way—these are the symptoms that are typically present. But when you come here, you realize every client is so different, even though they may have experienced the same type of injury.

You need to learn skills to adapt what you do based on the client. Two clients might have the same goals, but the way they get there will be different. Some of the kids are only motivated by Peppa Pig or Paw Patrol, while for others it’s their favourite band. Learning how to incorporate what they love into therapy makes it so much more meaningful. One of my favourite parts of the job is thinking outside the box.

BLOOM: What are the most important qualities for someone in your job?

Carling Robertson: Patience is number one and empathy for sure. You have to be flexible and adaptable, because no two days are the same. One of the great things about Holland Bloorview is that I’m given latitude to be creative and to come up with new ideas. For example, one of my young clients asked if I could go to a tea party at her house. So we’re going to do it here, instead. You need a willingness to learn. If you think you know everything, that’s detrimental. You also need a willingness to accept constructive feedback from colleagues and families.

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

Carling Robertson: I think the gaps in programs and resources for specific age groups. I’d love one long, continuous road map of resources from birth, all the way to employment.

BLOOM: You have a tattoo on your arm. What does it say?

Carling Robertson: It says curiouser and curiouser. It’s the only quote I could remember from Alice in Wonderland. It makes me think of someone observing something that’s a bit different, and wanting to learn more about it, to get to the bottom of it. It’s about thinking more critically. I knew that being curious would be a constant in my life. I’m super curious getting to know each client, and finding out how they tick, and what I can include in therapy that will make just that little bit of a difference.

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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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'The tears represent sadness, but sort of a beautiful sadness'

By Louise Kinross

Jessica Chan, 20 (above), made a mask to convey what it’s like to live with a brain injury. At age 17, she had surgery to remove a brain tumour. Today, the University of Toronto student is one of several young adults showing masks they created at an Unmasking Brain Injury workshop at Holland Bloorview. The goal is to increase public understanding of this invisible disability.

BLOOM: Can you tell us about your brain injury?

Jessica Chan: I had a brain tumour. I was having really bad nausea and headaches and I went to the family doctor multiple times, but they brushed it off as stress related, because it was exam time. They never even considered that it was possibly connected to this. Some of the exams I took, even though I felt like I was going to pass out, and some I couldn’t. That summer, when my vision was getting wonky, I went to the eye doctor to get glasses, and the doctor saw the pressure behind my eyes and sent me to the emergency room at St. Michael’s Hospital. They put me in a scan and saw a pretty big mass, and I didn’t go home for months. I had surgery there and came here for rehab.

BLOOM: How were things different for you after the brain injury?

Jessica Chan: Before I started noticing differences, I could remember things easily, including big chunks of text. Now the way I absorb material is different, and I have to get the general concept first. Before I could continually work for hours, and now I have to learn to take breaks and hold myself back or I tire myself out. 

Before my diagnosis, people around me said they started to notice that I seemed to take longer to respond, and wasn't as quick to get humour or jokes. They said I seemed more distant.

BLOOM: What about changes after your surgery?

Jessica Chan: When I first woke up from surgery my right side was completely paralyzed. I had to retrain it, and it’s still not as great, but I’m able to move and be almost as active as I used to. I used to play volleyball and be a cross-country runner, but when I went back to school after rehab they wouldn’t let me back on the volleyball team. That was a big blow. I was also in band and played trombone. I was able to play here in music therapy, and that was something from before that I could still do and that kept me going.

BLOOM: What has been the greatest challenge?

Jessica Chan: Trying to get back to where I felt like I was before. The summer of my brain injury was before Grade 12 and that was a big year, the year before going to university. When my parents told me I couldn't go back to school in September, that was a big blow. You feel like you had all of these things on your plate, and the plate has toppled over.

BLOOM: I know that some students find the invisible nature of the injury difficult when they go back to school.

Jessica Chan: When I went back to school people kind of knew what happened, but they didn’t know the extent, because I was walking and talking similar to how I had before. They didn’t notice my issues with right-sided weakness, and they couldn’t see that I had a hard time understanding. They didn’t know I’d had to relearn how to talk again. In our school, no one really talked about disability. I did a TEDx talk to the school to share my story. The theme was mindfulness, and I used my story to share my own experiences and the importance of taking care of your mental health while dealing with a physical injury.

BLOOM: Do you have any practical coping strategies that might help youth who are earlier along in rehab?

Jessica Chan: Build your support network. Find things and people that help you get through it. Make sure you keep connected with your friends. My family was an important part of my support. I also relied on support from health professionals. When I was in the ICU, a big part was building mini-relationships with the nurses. Don’t be afraid to open up and make connections.

BLOOM: How have you changed?

Jessica Chan: I had high grades and I’ve always been an over-achiever. I was going to enter a business program, and I put a lot of expectations on myself. I think I cared a lot about what I feel are superficial things now.

When I couldn’t pursue that at the pace I wanted, I had to start looking at other qualities I have to offer—other than my GPA. Through this process I was introduced to health care, and the support I was provided reminded me that that’s more of what I want to do with my life. I’m now at the University of Toronto in a psychological and health sciences program, and hope to specialize in mental health studies.

BLOOM: Can you describe your mask and why you decorated it the way you did?

Jessica Chan: I designed it on the spot. The red side represents the one-sided weakness and the pain you feel targeted in that area of your head. I feel pain is most closely associated with red. The rest is mostly a lighter, brighter blue, the wellness part and me fighting to make it okay. Blue sky, blue waters, clarity. When you think of those calm words, you think of the colour blue. And when you combine red and blue, you get my favourite colour, purple.

The tears represent sadness, but sort of a beautiful sadness. This experience has given me many opportunities that I wouldn’t have otherwise had, and there’s some beauty in that. I feel like I was pushed forward to get more insight into myself a bit earlier than I would have. The tears are for pain and growth.

The floral arrangement of gems represents the beauty that spontaneously occurs as a result of what I've been through. The new paths, connections and friendships are represented by this colourful, sparkly collection.

BLOOM: What are your hopes for the future?

Jessica Chan: I’d love to be a counsellor, a psychologist. In whatever I choose, my main goal is to be able to help people in a meaningful way.  I was also really inspired by the speech-language pathologist I had here, so that’s another pathway.

BLOOM: What interested you about speech therapy?

Jessica Chan: It was the testing. I remember there was a picture of a hammock, and I couldn’t for the life of me remember what the word was.

BLOOM: Because of problems with word finding.

Jessica Chan: I couldn’t find that word. I tried to think about it for a long time and when I finally got it I was amazed—that I’d lost a word I knew my whole life. It hit me how fragile language really is, but also how important it can be. 

Thinking about the rehab process and helping people find words could combine with my interest in psychology and my passion in writing and language. Because I’ve had that experience of not being able to find words, I have insight into what it feels like for the patient. I think that would make me more empathetic.

BLOOM: We just did a story with Dr. Brian Goldman, who said that the best doctors are ones who have been patients. Did you find making the mask valuable?

Jessica Chan: Yes. Every time I have to do something that involves thinking back, it helps me realize how I’ve grown. While living it, you don’t think about all the little things you’ve accomplished through this process. Having a chance to make my mask and explain my story helps me realize how far I’ve come. I also have a radiation mask that I keep at home, as another reminder. It was starting to look a bit scary, so after doing my mask here I covered it in flowers. Now it’s a decorative piece that isn’t as frightening.

BLOOM: And the flowers are about growth.

Jessica Chan: Yes, the growth part. It’s not just about the physical symptoms, it’s the whole process that happens to you and the changes, and the emotional impact—especially the little things. There are multiple layers. It’s not exactly being comfortable on the bus telling people you can’t give up your seat, because you will fall over. It’s subtle things that people fail to recognize.

BLOOM: You mentioned emotional impact. Can you talk more about that?

Jessica Chan: It was hard. It was shocking. It takes a while to really digest and understand all of the subtleties of how you’re impacted. Every time you’re told you can’t do this now, it’s another blow to your self-esteem, your ability level. Or being told you have to do something this way, instead. Before, I could easily serve a ball, but now, after I had to train for it, I still can't do it as well as before. It’s having to work back to the level you were. Everything takes longer to process and do.

BLOOM: It sounds like you would need a lot of self-compassion.

Jessica Chan: That’s hard for me to get. It’s still hard for me to comprehend why this happened to me. I’m in second year at university, and so many people I know are already ahead, in their final years, and they’ve had co-op positions and jobs that they’ve kept. You can’t help but compare.

BLOOM: But it sounds like you’ve developed in other ways.

Jessica Chan: Having people tell me about my insight and level of compassion that they don’t have, or can’t really ever get, that was a big realization to me that this might have turned into a different path, but I went along the path just as much as they continued along theirs.

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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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After a near drowning, a teen accepts she's 'a different person'

By Louise Kinross

Recently, Holland Bloorview family therapist Caron Gan sent me this message:

‘Yesterday I went to pick up a prescription at my local drug store and was served by a former [patient]. She had sustained a significant brain injury from a near drowning, and was not expected to live. In spite of this, she made a great recovery and was determined to be a pharmacist...Her mom has been instrumental in supporting her daughter. Seeing her behind the pharmacy counter brought such joy to my heart. I wonder if this could be a story to inspire others who are in the earlier stages of their rehab journey?’

In 2011, Chantel Asamoah almost drowned when she was pulled into an undertow at Woodbine Beach in Toronto. Chantel, then 15, didn’t know how to swim and was playing in the water with friends. One friend, a lifeguard, tried to pull her out, but Chantel was in such a state of panic that she pushed her down. Her friends ran to call 911. An emergency crew arrived, but couldn’t locate Chantel, so they formed a search line with others on the beach and walked into the water. “When they did find me I’d been under for about 10 minutes and had a very weak pulse,” Chantel says.

We spoke about Chantel’s brain injury and how she’s learned to cope with it in her journey to become a pharmacist. She’s almost finished her third year at the Leslie Dan Faculty of Pharmacy at the University of Toronto.

BLOOM: What was your prognosis when you got to the hospital?

Chantel Asamoah: The doctors told my mom I wouldn’t be able to walk or talk, and would essentially be a vegetable. They weren’t sure if I was going to make it, and they asked if she wanted to donate my organs.

I was at SickKids for two weeks and the first time I woke up my mom said I was confused about what happened and why I was there. I still have no memory of the accident. When I woke up I thought I was younger than I was. After SickKids I was at Holland Bloorview for two months.

BLOOM: What was the biggest challenge?

Chantel Asamoah: My memory. I couldn’t remember what I had eaten the night before, and I couldn’t remember how some family and friends were related to me. There was also a big impact on my processing speed. It took me a very, very long time to take in information. My mother noticed that generally my personality was different—I would become agitated more quickly and my responses were more emotional. Speaking and eating were okay, but I had some problems with word finding.

When I first came to Bloorview I was in a wheelchair. Then I began to walk, but I was a lot clumsier and had problems with balance and coordination. That’s what I worked on in physio.

Before I was injured I played sports at a high level: basketball, volleyball and flag football. That was the end of me being involved in sports.

BLOOM: How did you cope with all these changes?

Chantel Asamoah: At first I was kind of angry about it. I didn’t want to accept it. I just wanted to pretend that rehab was something I had to do, but when I got out of here, my life would be the same. Now it’s been almost eight years, and I’ve definitely accepted my brain injury and I’m working on my coping skills.

BLOOM: You mentioned your mom felt your personality had changed. How did you feel compared to before the injury?

Chantel Asamoah: I felt like a totally different person. Things that came naturally to me before weren’t the same anymore. It was harder to do simple things, like playing sports. I was pretty emotional about it because sports had been a huge part of my life.

In terms of studying, I was a very smart student. I wouldn’t say my brain injury increased or decreased my intelligence, but it made it harder for me to study. Something that before took me an hour would now take three hours. I had to take a lot of breaks and I was easily fatigued and had to take naps. And it was hard to concentrate in class.

Part of accepting that you have a disability is accepting that others may not completely understand. For example, when I first went back to high school, most people knew I was getting accommodations. I was still performing well with the same marks, but with more effort. My other peers would tell me ‘Why do you get extra time for an exam when you get higher marks than me?’

BLOOM: I’ve heard other youth with brain injuries talk about how they lost friends after the injury.

Chantel Asamoah: The whole situation was hard on my friends, especially the ones at the beach and the ones who came to the hospital to see me every day. They thought everything was the same. It was hard for them to cope with the fact that I was a different person.

I would say I lost a lot of friends. But I was also able to have new friendships with people who didn’t know me before the incident. So it was a brand new slate.

It was especially hard for my mom to understand that the way I process things or react to things is slightly different. Caron Gan made a big impact on my mom’s life. Her sessions with my mom helped her to understand how to better cope and deal with me as I was transitioning from hospital.

BLOOM: Can you talk about that transition?

Chantel Asamoah: When you’re in the hospital, everything is idealized, compared to real life.

BLOOM: Do you mean protected?

Chantal Asamoah: Yes. It’s not till you leave the hospital that you’re dealing with everyday stressors. When I left, Caron visited regularly with my mom at home, which was good, because my mom doesn’t drive and works.

[Social worker] Val Lusted met regularly with me at my high school, to help me cope. I had a lot of anxiety surrounding the fact that I was diagnosed with a brain injury, and wondering how it would impact my relationships with my friends or work or the sports I used to be involved in. One of the things Val did was talk about relaxation techniques. I still use them when I’m extremely stressed out, especially at school.

Before my accident, I was a perfectionist. That is very hard to do when you have a brain injury. When I first got out of the hospital, I was fighting the diagnosis and Val helped me come to terms with that, and with understanding that not everything can be perfect. She taught me ways to cope with things when they aren’t perfect, ways that are more desirable than getting angry and lashing out.

It’s really important to have these supports after you leave, because when you’re in hospital, you don’t get a taste of how your brain injury will impact everyday life. I’ve heard that a lot of this work is now done while patients are in hospital. For me, it was meeting with Val after I left that really helped me in finally accepting that this is a part of me. I feel it was a big factor in my school outcome.

I also worked with Sara Diederichs, a community resource teacher from the Bloorview School. She helped with my transition from high school to post-secondary school. At our high school there was a guidance counsellor, but it wasn’t the same. Sara understood the intricacies of dealing with someone with brain injury.

BLOOM: Were you able to finish high school with your peers?

Chantel Asamoah: Yes. My accident happened right after I wrote my Grade 10 exams and I went back to school the second week of classes in September.

BLOOM: How did you decide on going into pharmacy?

Chantel Asamoah: Pharmacy was a goal for me before my brain injury and I decided I wanted it to stay a goal. Because I had to give up on some things, like sports, I wanted to be able to maintain some part of what I was before.

I’ve always been interested in the sciences, biology and chemistry. I wanted to help people, but I didn’t necessarily think other healthcare positions jived with my personality. I also noticed that I liked educating people.

I was a tutor in high school and did a lot of mentorship programs with other students. Pharmacy is a good blend between having knowledge of the drugs and the biology and chemistry, and education. You’re taking that knowledge and applying it to patients—whether you’re solving their drug therapy needs or educating them about their medication or condition.

BLOOM: What has pharmacy school been like?

Chantel Asamoah: It’s been difficult for me, but rewarding. It’s been difficult because of the sheer amount of work and information I have to go through, and the number of courses. I’m finding it’s important to advocate for myself. I’m glad I got a lot of practice doing that in my last years of high school and first years of university.

BLOOM: What kind of work do you want to do when you graduate?

Chantel Asamoah: I really enjoy community pharmacy. I’ve been working in a pharmacy since my first year and what appeals to me is getting to build relationships with patients. When you work at a community pharmacy you see patients grow up. They come back and thank you for the recommendation you gave them last week. Even now, I have patients who come and remember my name or call and ask to speak with me.

BLOOM: It seems that you would bring special qualities to this work because of your health experiences.

Chantel Asamoah: In school, we don’t talk much about invisible disabilities or brain injuries. I think I have a certain understanding with patients who have an invisible condition. I know that even though things look normal on the outside, it doesn’t necessarily mean they are. It gives me extra perspective and an understanding that things may not be as they appear. It allows me to be more sensitive.

Some of my co-workers tell me ‘Chantel, you’re too patient with some people.’ I think I understand the importance of patience. I needed people to be patient with me. Patients will come back looking for me because they know I’ll go through all of their medications and answer all their questions.

BLOOM: What do you hope to do when you graduate?

Chantel Asamoah: My hope is I’ll get a full-time job in a community pharmacy. I also want to be involved in advocacy for invisible disabilities and disabilities in general. I’ve reached out to Dolly Menna-Dack with the youth advisory.

BLOOM: When you were in hospital here did you meet other youth with brain injuries, or hear from people who were further along with their journey?

Chantel Asamoah: I didn’t hear stories about how other people were affected, or how people were dealing with it successfully. It would have been nice to hear.

BLOOM: I remember that a few years ago we were able to connect a current inpatient with a former one and she said she found it so helpful to speak to someone who understood.

Chantel Asamoah: I think it would be very encouraging.

BLOOM: I understand you volunteered in our pharmacy before you went to pharmacy school?

Chantel Asamoah: Yes, it was my first exposure to pharmacy. I learned a lot about the accuracy that is needed, and it was a safe environment for me to learn how my disability might impact my work in the field. Everyone knew I was a past patient, and they understood more about invisible disability than the general public. They really focused on what goals I wanted to reach, and only expected me to do things that they knew I could do.

BLOOM: What advice would you give other youth earlier on in their rehab for brain injury?

Chantel Asamoah: What's important to be able to move on is acceptance. You have to accept that although the brain injury doesn't define who you are, it is a part of your life. It doesn't mean everything is now negative. Once you accept it's part of you, it allows your mind to think of ways to cope with things.

Advocacy is very important. Only you, yourself, know exactly what you need in terms of accommodations at school, or how you want your family members to treat you. That reflection on what it is that you need is important.

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A practical guide for parents of disabled children and their doctors

By Louise Kinross

Many of you followed Julie Keon on her blog. Julie just released a revised edition, with new content, of her book What I Would Tell You: One Mother's Adventure with Medical Fragility. The book covers all Julie has learned since her daughter Meredith was born with a severe brain injury 14 years ago. One of the best parts of the book, for me, was the chapter about befriending grief. Julie asked me to write a review, so I did:

What I Would Tell You is a candid, riveting account of what happens when you're told your precious newborn will not do any of the things you anticipated. Julie leads you through what to expect: how you might feel, how others might react and most importantly, what you can do to thrive and find meaning.

This book is packed with compassion, practical wisdom and life-affirming insights. It's a must-read for parents, family and friends. Anyone seeking courage and resilience in the face of catastrophic events will benefit from it. 

What I Would Tell You is an indispensable guide for doctors and nurses and others who work with children with medical fragility. It illuminates the kind of care that empowers and uplifts, and the kind of care that can break down and further traumatize.

Congratulations Julie! This book should be on medical school curriculums.

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Six years later, a mom embraces life with her son's brain injury

By D. Brown

Wow! How time flies! Another “back to school” season is upon us. Six years ago, our healthy two-year-old son was hospitalized after suffering seizures and then severe brain inflammation. Since that fateful day, we have watched our son suffer and heal, struggle and overcome, falter and thrive.

Today, our son is firmly settled at his school where there aren't any grades. I know that he “would” be in Grade 3, if he hadn’t had his life-threatening illness. Instead, it's our seventh year raising a toddler. And when I see the young boys playing organized baseball at the local park, my heart does ache.

Despite the sadness around what would have been, what's new about this anniversary is that I no longer feel victimized by what happened. This year, there’s an acceptance around our family's reality and the sense of responsibility that comes with it.

Despite the fact that we have willingly sacrificed ourselves every minute of every day for our son's wellbeing, and are exhausted and worn, I now embrace this reality rather than feel sorry for ourselves.

I don't cower with embarrassment or feel the need to explain our situation when our son is loud and excited in public. I smile at him and comment about what he is experiencing, excited right along with him.

I no longer feel burdened by changing the sheets every few days with overnight diaper leaks. Instead, I'm thrilled that our son is daytime toilet-trained since February.

I don't feel slighted because he’s not neurotypical like other kids. I am enthusiastic about his unique unfolding of growth and development that continues to amaze us.

How did I get here? I think it's a combination of a few things.

Our son has continued to show steady gains in his recovery and development and time has given us practice at our new reality.

I don't really think about what “would have been,” because it's as irrelevant as what life would be like if I were born male, or in 1823, or if our son were a daughter. It didn't happen that way, so who cares?

After our son’s brain injury he was diagnosed with autism. We’ve embraced the Developmental, Individual differences, Relationship-based (DIR) model, or DIR/Floortime as the approach within which to support our son's growth. This is a developmental, rather than a behavioural, approach. DIR/Floortime is a lifelong model that encourages independence, relating, communicating, thinking, and the pursuit of a meaningful personal journey.

This too has given us a framework for acceptance because we can now be patient with our son's own developmental trajectory.

Sure, I still feel sad that our son will never have the kind of school memories that we did, that he hasn't started academics yet, doesn't know how to colour or read, can't write his name or dress himself, nor understand how to count objects.

But for the first time, I'm also okay with it because it will probably all come in time. If it doesn't, he's already perfect as he is, if I just open my eyes and see who is before me, instead of comparing him to a child I might have imagined.

After six years, I've come to own our reality. Our family tragedy called upon us to be there for our son in ways we might not have otherwise been able to.

For example, without our son’s illness, I would have been back at work much earlier, rather than staying home to care for him full-time. Being at home during the day since he started school gave me the time to fulfill the hobbies that kept me sane, and gave me the gift of getting to know our son to the point of experiencing the world from his perspective, to the best of my ability. With that empathy, I have been able to help him flourish.

He feels safe in this world with us. He is loved and treasured. His wellbeing is always taken into account first and foremost. Every day, I wake up happy to have our son with us and to be his mother, because I know that we can take nothing for granted.

I do feel angry, sad, scared, sorry and tired from time to time, but these moments are now fleeting, because I have the confidence that I understand our son, and I know how to support and guide him through his development.

This is different from how I felt in the early days, when I was scared and desperate to find the right therapy for him, or felt pressured to teach him skills that professionals thought he should know. I became disillusioned with the pressure to make him “school ready,” when I was only concerned with his wellbeing and development.

Mostly, I feel joyful, grateful, proud, hopeful, and eager. I've earned this because of the joy I sense in him and see on our son's face every day.

Our family, through my dedication, have collectively given our son a life where he can be himself and is happy. What more could we ever want?

You can follow this family on their blog.

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A dad's view of the NICU

By Louise Kinross

Bob Moran is a political cartoonist for The Telegraph newspaper in Britain. In 2015, he illustrated a heartfelt memoir about his daughter Poppy, who suffered a brain injury during birth. Father’s Days contrasts how he imagined his new role as dad with the terror of seeing his critically ill newborn hooked up to machines. It’s been viewed millions of times around the world and is used to train clinicians in neonatal intensive care units. This year on Father’s Day, Bob released a sequel about his family’s first trip abroad: Father’s Days at Sea. His daughter Poppy is now four. “She’s happy, she’s cheeky, she’s determined,” he says in the second video. “She also has cerebral palsy and epilepsy.” BLOOM spoke with Bob about the process of illustrating his life parenting a child with a disability.

BLOOM: When did you start drawing the story of Poppy’s birth?

Bob Moran: The idea came about when she was two. A newspaper colleague suggested I create a long-form piece done in cartoons that would be something autobiographical. It would take a difficult subject and do it in cartoon form to make it more accessible and easier to talk about. I said the only thing that would be suitable is the birth of my daughter. But to begin with, I really didn’t want to do it.

BLOOM: What were your concerns?

Bob Moran: I didn’t feel comfortable about sharing something so personal and I was aware that I hadn’t dealt with a lot of it myself. I was nervous about confronting the memory head on like that. Another thing that worried me was the awareness that families who’ve been through this all have a slightly different story, and their children have different diagnoses and levels of ability, and I was aware that it had to be sensitive to all of that. Ultimately, I realized that the emotional journey everyone in this situation shares is similar.

BLOOM: The video is so moving because it’s so candid. You contrast how you imagine fatherhood will be with the shock and helplessness of learning your daughter is fighting for her life.

Bob Moran: Not many people had heard that story from a dad’s point of view before. A lot of the correspondence I got was from other dads saying it really helped. You shouldn’t generalize, but I think men tend to find it harder to face up to the emotions of things like this, and there’s that sense as a dad that you’re supposed to be strong and hold it all together. That struck a chord with dads and enabled them to start talking about the fact that they felt the same way I did. They felt quite helpless.

BLOOM: What was the process of creating the illustrations?

Bob Moran: Recreating it in so much detail was like a form of therapy for me. The first thing I did was look at all the photographs we had taken. We’d taken a lot of photos when she was born and then during the two weeks we spent in intensive care. I had deliberately not gone back to look at those. I had to look at them for reference, but also to help trigger my memories of how I was feeling. That, in itself, was very difficult.

It made me start to realize there were a lot of feelings I hadn’t processed. I had to work out a way of telling the story that dealt seriously with the emotions, but with a visual style that was gentle and accessible. I had to create myself as this central character that was slightly clueless and awkward.

BLOOM: Because you’re so honest, there’s so much humour in the story. I love the part where the nurse is basically ordering you out of your wife's room because you can’t cope.

Bob Moran: For a long time it was sillier. It went through lots and lots of versions. I worked on the whole thing for about eight months. I think in total I did over 200 drawings for it. For a long time there was more of that silly, outlandish humour. Then we figured we needed to strike a balance with that to hit the right emotional note, so we came back to sensitivity. We didn’t want to make it too silly.

BLOOM: Did you have dedicated time to work on this project?

Bob Moran: It was in addition to my regular political cartoons. It was a good change because it was a complete change of head space and subject matter. To be working on something completely personal and apolitical was refreshing.

BLOOM: But you were doing it on top of regular work?

Bob Moran: It did get stressful at points. More for my wife, Sally, because I don’t think either of us realized how long it would take. As the video explains, we were so busy with Poppy and our days were filled with hospital appointments and therapy. So in a way trying to create this project was very difficult to balance with being a dad and looking after her.

BLOOM: What is it about illustrations that enable you to convey emotion and ambiguity in a way that words or photos don’t?

Bob Moran: That’s right. You could tell the same story using photographs of all of those frames and it wouldn’t work in the same way at all. If you’re illustrating, you have total control. You decide what to leave out, which is as important as what to put in, and you can make things more ambiguous. You can amplify bits of emotion or focus on certain things. And you can add in certain bits, like the superhero bit. There’s something subconscious going on for the viewer who knows these are drawings that someone sat down and did, and that makes them feel more comfortable. They’re not looking at something real, and yet it’s making them think about something very real. They feel they can immerse themselves, but in a comfortable way.

There were certain moments where I didn’t want to make it explicit in terms of what was going on. For example, I didn’t want any words with the frame where I’m in the hospital and going to see Sally, and she’s crying in bed. It’s enough that you see the picture.

BLOOM: I think that also makes it relatable to people who have been in similar situations. As a parent, I can see myself in that image. What did you learn about yourself through the creative process?

Bob Moran: It helped in lots of different ways. It threw everything into perspective. It enabled me to really get my head around how far we’d come since those early days of her birth, and how well she was doing relatively, when compared with what we expected at the beginning.

Personally, it gave me an understanding of how guilty I had been feeling about the whole thing. I think this is true of a lot of parents who go through this. Part of you always feels like it’s your fault, or you could have done something to stop it. I think telling the story again in my own way—it didn’t make the guilt go away—but it helped me to accept that maybe it’s a natural feeling, and I shouldn’t let it worry me.

BLOOM: I also think that when you have to tell the story over and over, it sinks in that you really couldn’t have done anything.

Bob Moran: When I started thinking about how am I going to tell this to someone who doesn’t know me or about me, how do I make this relatable and understandable, I ended up telling the story back to myself, as if for the first time. And you start to realize, you know, that there wasn’t really anything I could do and maybe I did cope as well as anyone else would. I’ve always dealt with things by drawing them, ever since I was a child.

BLOOM: There’s one brilliant line where you say 'I just didn’t think I was strong enough,' with an image of you lying prone on the floor at home, after leaving the hospital. My son is an adult now, and I still feel like I’m not strong enough. Somehow, having a child with disabilities seems to show up all of my inadequacies.

Bob Moran: There are two aspects to that line. A lot of people will say to me ‘Yea, what parent ever does know what they’re doing?’ and that makes it relatable to everybody. At the same time, it means something very different to parents with a child with a disability or additional needs. It literally means you don’t feel like you have the inner strength to be able to do what the child needs, or what you want to be able to do for them—which, ultimately, is to take it all away.

BLOOM: Yes. I think that’s it. I always wish I could be better than I am. Or maybe I wish I didn’t have such wild, conflicting emotions about it.

Bob Moran: Before Poppy was born I felt like I had a rough idea of what I needed to be able to look after a baby. I felt I was equipped to do the pretty simple things—to give a home to live in and love them and be ready to take care of and teach them things. Then suddenly, it was like because I’m not a neonatologist, I’m not up to this. I can’t look after my daughter. I do pictures for a living. You’ve suddenly got these people who’ve spent 10 years in medical training saving her life, and it makes you feel so totally inadequate. It’s silly in a way, because you’re there, but you still feel like it should be you somehow.

BLOOM: You talk at the end of the piece about how Poppy, and the many health professionals in her life, are the real heroes. Did you feel happy with the medical care you received?

Bob Moran: That’s a bit complicated. Once she was transferred to the NICU, which is where the video begins, she received care that was out of this world. But everything that happened in the lead up to her being born and my wife being in labour was horrendous and really bad. Essentially, Poppy should never have had the brain injury. Sally was two weeks overdue and when we went to the hospital saying something is wrong, they wouldn’t let us see a doctor. So we’ve experienced both extremes of the health care system: the worst and the best.

BLOOM: What about the rehab services Poppy has received since?

Bob Moran: Overall we found it a bit of a mixed bag. Quite a lot of the therapy that she’s received we’ve had to seek out and pay for ourselves. What you get on our health service here is very basic. Last year she had one physio session that was covered.

BLOOM: One?

Bob Moran: We had to end up paying for private physio for her. The communication from the system to us has been very difficult, very bad at times. Certain things that we knew she needed we had to really keep fighting for and pressing for.

The system is disorganized and doesn’t make sense in a lot of ways. For example, she needs a Lycra suit that she wears to support her core muscles when standing and walking. So they measured her for the suit, then we had to wait six months for it to arrive. By the time it arrived, she’d grown out of it. It’s really ridiculous.

The one thing I thought at the time she was born was at least we live in a country where she’ll have everything provided for her, and the equipment and therapy she needs. But it hasn’t quite worked out like that. It’s really disappointing. I don’t think it’s to do with a lack of funds. I think the system is really disorganized.

BLOOM: Britain seems to be a difficult place to live as a person with a disability at the moment, with all of the cutbacks to home-care supports. There's also a perception that people with disabilities are 'working' the system.

Bob Moran: I think it is hard in this country. It’s a question of balance. There are things we’re willing to spend millions of pounds on that are totally not needed. Yet we’re not willing to make sure that disabled people have everything they need. Poppy has needed a wheelchair for over a year now and we just last week found out she can have one, we hope, in two to three weeks. Poppy can walk independently, but she’s really unstable, so she falls over all the time. She also tires quickly and can’t walk a great distance. Originally, when we were told it takes a year to get a wheelchair, we said how is that even possible? Why aren’t we doing something about this?

BLOOM: Has Father's Days been used to educate medical students?

Bob Moran: It’s been used to train doctors and nurses in Britain who are going to work on neonatal wards. Quite soon after the video came out, I had a lot of neonatal doctors get in touch with me to ask if it would be okay to show it to their staff. It’s been shown at conferences all over the world, and translated into four or five languages.

BLOOM: Wow. That’s amazing. Can you tell us a bit about Poppy now, at age four? What does she enjoy doing?

Bob Moran: The latest thing is horse riding. Lots of people said it would be really good for her hips and her core strength, so we found a nice little stable near our home and we’ve been taking her every week. She loves being around the horses and touching them and the smell of them. It calms her down and makes her feel at ease. It’s really making a difference physically as she’s getting stronger and has better balance. She has a little riding hat—it’s the smallest size they make, and it’s still massive.

She loves drawing as well. She likes to get the paint and splash it around on the paper. She likes to come up to my studio and see what I’m working on. When I’m painting, I have sheets of paper where I mix the paint up next to my drawing board, so it’s a mess of colour. She always says she prefers that to the picture I’m working on.

BLOOM: That's funny. How does she get along with her little brother?

Bob Moran: They have a good relationship. They’re very similar in development, because Poppy was so delayed with speech and movement and Dillon has ended up being quite ahead because of the work we’re doing with Poppy. He’s listened to all of the speech therapy. Some people think they’re twins because they’re so similar.

BLOOM: How would you describe your new video called Father’s Days at Sea?

Bob Moran: It’s a sequel, a way of showing where we are now as a family and, in a way, how far we’ve come. It’s more lighthearted than the first video, and doesn’t have the same emotional punch. What was important for me was we were genuinely quite scared about going on holiday. I hoped that other families would watch it, and feel like maybe they can go on holidays, too. It won’t be perfect, but perhaps it will be okay.

BLOOM: Do you plan on doing more videos in the series?

Bob Moran: It depends on if the newspaper wants more. I do have some other projects on the same theme that are more fictional.

BLOOM: Writing about parenting a child with a disability?

Bob Moran: Yes. Writing the first video made me reflect on where I wanted my career to go, and how I wanted to use my talents I guess. I found it so much more rewarding than just drawing politicians in a very cynical way. Doing this actually affects people in a real way, and I need to do more of this. What I’ve done so far has reached a lot of adults and maybe helped parents in similar situations. Maybe people who didn’t know anything about this world have gained a different perspective on it. What would be even better is if I could do the same kind of thing in a way that worked for children.

BLOOM: Like as a children’s book.

Bob Moran: A book that everyone could have in school that would help them talk about disability and not be afraid to ask questions. That would help children understand what a disabled child had gone through and what their strengths are.

BLOOM: What do you hope people take away from your videos?

Bob Moran: Overall, I hope people feel uplifted generally and reassured that however useless you feel as a parent, you’re doing okay. There’s no right or wrong way. As long as you love your children, you’re doing a good job. Don’t beat yourself up is one of the main messages I’d like to get across. Don‘t be hard on yourself. If you’re in this situation, everyone is doing their best, and no one can do everything.

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