'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.

Read More

Siblings say depression in disabled adults is their top worry

By Louise Kinross

Concern about the mental health of a brother or sister with a developmental disability was the most pressing issue for over half of 360 Canadian siblings who completed a survey by the Sibling Collaborative released in March. “People with developmental disabilities are three to four times more likely to have depression and anxiety than the typical population,” says co-author Helen Ries. “As life goes on, and they face more adversity—such as the death of their parents, and changing living situations—it’s not lost on their siblings that mental health is an issue, and there are very few resources to support them.” Two years ago, Helen wrote a piece for BLOOM about her own experience having her brother Paul come to live with her and her husband after the death of their parents. We spoke about the findings of the survey.

BLOOM: Do you think siblings identified depression and anxiety in their brother or sister as the top challenge because they know the statistics, or because it’s something they’ve experienced in real life?

Helen Ries: I think they’ve seen it in real life. When you have a brother or sister who has faced discrimination, harassment, and, potentially, even abuse their whole life, you know there’s going to be some kind of negative outcome on mental health.

We asked about 13 different challenges, and we didn’t expect mental health to come out as number one. But I don’t want to forget the mental health of parents. That was rated second. As brothers and sisters, you watch your parents deal with so much over a lifetime. One respondent talked about how her parents were in their 90s and still looking after their adult child.

BLOOM: I know Yona Lunsky at CAMH is studying which interventions reduce depression and anxiety in parents. Almost half of your respondents said getting emotional support for themselves was a challenge.

Helen Ries: Every sibling journey is different, and it depends on at what juncture they might need that support. For example, in my case I was faced with the death of my parents and transitioning to sudden caregiving. You have your own grief, and you have the added anxiety of trying to learn in two to three months what your parents learned over 40 or 50 years. The expectation is that you will continue to support your brother or sister in the same way your parents did. You go to Developmental Services Ontario and say ‘My brother is alone in the world, what can we do to best support him?’ and that crisis point doesn’t trigger anything. I think we need to be supporting the mental health of siblings early on, and it should be part of programming.

BLOOM: Housing was listed as a top need for 60 per cent of respondents. How can you respond to that when in Ontario, the wait for a group home is over 20 years?

Helen Ries: Everybody knows that housing and financing paid support are huge issues within the disability community. What’s heart-wrenching is that this is problematic over generations. As part of our survey, we asked ‘Where is your brother or sister living?’ In early adulthood, it’s not a popular choice, which is understandable, because it’s not easy. But we noticed there’s a jump in later years when they are living together—and that speaks to the fact that there really aren’t other options. There comes a point, related to the aging of parents, where housing becomes a potential crisis.

BLOOM: For people who need 24-7 support, everything really falls on the parents to create something.

Helen Ries: I think it’s because there aren’t a lot of options, and there is a lot of judgment and criticism around different choices. We’ve been criticized for choosing to live with my brother. It’s difficult for families when you face criticism. It can lead to a lot of second-guessing.

BLOOM: In terms of getting information to help them, siblings in your survey said friends and family were their top choice. But you note that in focus groups, you learned parents don’t share information with siblings.

I wanted to comment, as a parent, on why that may happen. I came to Holland Bloorview in 1999, and for the next decade, I went to all of our sibling workshops. The advice we got was to make future plans for the child with disability, independent of siblings, so as not to place anxiety on siblings. But the reality is that with no public housing and funding shortages, it’s impossible to make a plan like that. So in my case, as my son got older, I went silent. I didn’t want to harm my other children by telling them there was no plan, so I just didn’t say anything.

Helen Ries: I don’t think you’re unusual. Parents feel guilty and confused and they don’t have a lot of choices. In our family, my parents wanted me to have my own life. My dad had a plan that I was not involved in creating, but there are very few parts of that plan that still stand today. I think that’s because life is so dynamic and things change. This discussion in families has to happen over a lifetime. It needs to be ongoing and dynamic and include siblings. As a family, what kind of life does my family member want, and how can we support that?

BLOOM: I think there are siblings who naturally want to play a big role, but for others, for many reasons, they may not be able to. What happens when a sibling says no?

Helen Ries: Well, at least you have the information you need. What you said is really important—for some siblings it comes naturally, and for others it doesn’t, and that’s why every sibling pair is on their own journey.

I know it would be very hard to have these conversations. When parents come to chat with me, I see that instead of enjoying life day-to-day, they’re so worried and stressed about what’s going to happen that a lot of joy 'now' is lost.

PLAN in Vancouver is doing a lot around developing a future planning tool. You may not be able to do all of the parts, but maybe you can do one part. For example, my parents got the RDSP stuff right and the Henson trust stuff right, even though they weren’t able to solve the housing problems for me. That helps me to fill the duty I have now.

BLOOM: Sixty-five per cent of respondents said they’d like an online website with information that could help them.

Helen Ries: There are some areas in which we can provide support. For example, in helping siblings build resilience, which is the mental-health piece. How do you have a creative mindset to help you with problem-solving? Or maybe in sharing ideas from siblings who have found solutions. Our collective is based on contribution and collaboration and is an asset-based perspective. We want to lend our experiences and ideas to other organizations, to build their capacity around the sibling issue. This doesn’t have to be housed within the disability realm. This is a huge issue. It’s a gender issue—mostly affecting women. It’s a poverty issue. It’s a homelessness or housing issue.

Helen will be discussing key findings of her report with co-author Eric Goll and CAMH psychologist Yona Lunsky in a PRP webinar on May 14. Two recommendations are to create a national survey, as this survey had a majority of respondents from Ontario, and a national conference for Canadian siblings in 2019. The third author on the survey is Becky Rossi. You can join the collaborative on Facebook.

Read More

A brother unites a family and inspires research

By Louise Kinross

Five siblings have created research scholarships in occupational science and therapy at the University of Toronto in honour of their brother Peter Rappolt. Peter (bottom centre), the youngest in the family at 57, has a developmental disability and severe, chronic mental illness. His brothers and sisters have worked together for decades to advocate for him in the health system.

The Peter Rappolt Family Scholarships for Research in Occupational Performance and Wellbeing are aimed at improving the lives of people with complex, intractable conditions. Peter’s sister Marg sits on Holland Bloorview’s board and chairs its business and audit committee. BLOOM spoke with Peter’s sister Susan, who is chair of U of T’s Department of Occupational Science and Occupational Therapy, about her experiences as a sibling.

BLOOM: It’s quite unusual that there would be five siblings who are all able to support their brother. Where does Peter currently live, and how do the five of you stay in contact with Peter and each other?

Susan Rappolt: Peter is the youngest of the six of us and lives in Cambridge in a long-term care facility with a very high level of care. We all live in southern Ontario and are in reasonably close proximity. My sisters Marg and Gail are power of attorney for care and finances, and they’re frontline contacts with the nursing and support staff. We’ve hired workers to come in and take Peter out when he’s well enough to go for a drive and do activities.

My siblings are retired or semi-retired, and I’m the only one working full-time, so I visit on the weekends. We all text and e-mail after a visit with Pete, to keep everyone up to date on any swings in his abilities or mood.

This morning Marg visited and because Pete really likes picnics, Marg took him for an indoor picnic, because it was snowing. He’s had a slump these past few weeks and been pretty frail and psychotic, and in pain, so it was nice to hear that he’s feeling better. Marg sent out a photo of him eating lemon meringue pie and smiling.

BLOOM: How does Peter's mental illness affect him on a daily basis?

Susan Rappolt: Pete’s had probably every diagnosis you can imagine. He is paranoid and hallucinates and is fearful and very vulnerable to psychotic visual and auditory images when he’s not well. The intensity and frequency of his psychosis has increased over the past 10 years. More often than not, he’s engaging with people who are villainous and threatening him. They’ve tried every medication, and nothing has been successful. It’s really hard to see him suffering. Sometimes we go in and he’ll see us, and he can’t pull himself out of it, but if I give him a hug he’ll start crying on my shoulder.

BLOOM: When did his mental illness start?

Susan Rappolt: As a teenager and young adult. His primary diagnosis was developmental delay. So he has a dual diagnosis.

Pete has many cognitive strengths. He gets and makes jokes, and he has an amazing sensitivity and insight into human dynamics. He’s way more perceptive than other people in the room about how you’re feeling, and about how what someone says may affect others. He loves sports. In better days, he knew the names of hockey players and teams and followed hockey and baseball. When our kids were little he liked to do stuff with them and we’d have family gatherings. We’d go to the local diamond and the kids and Uncle Pete would play baseball.

BLOOM: Was your decision to become an occupational therapist influenced by Peter?

Susan Rappolt: Yes, it really was. When I was 11 or 12 and Peter was six, I recognized his potential to do stuff that wasn’t being realized because he was very much protected. And he was smart enough to milk it. It did influence my thinking, and when I learned about the discipline of occupational therapy, it seemed like an obvious fit.

BLOOM: I read a piece on the U of T website where you talked about having to advocate for Peter in hospital when he wasn’t getting appropriate care.

Susan Rappolt: Yes, that particular incident was horrible and it was outstanding, because we hadn’t faced that kind of discrimination in the health system otherwise. Pete wasn’t doing well and had an incident that looked like a small stroke. We got a message that he was on the acute-care side of the hospital and was being monitored, and would need to be kept quiet for a couple of days.

My sister and I went in and there was a nurse sitting there recording something, which I thought was odd. I asked ‘Is Pete eating? Is he drinking? How are things working here?’ And she said ‘no’ and put her eyes down. ‘So where’s the IV?’ I said. She said ‘No, there’s no IV.’ I knew what was happening then. ‘Okay, you start the IV right now,’ I said. No one had given a do not resuscitate order.

I know that our situation is unique in that we siblings probably have close to 10 post-secondary degrees, and lots of skill sets, and we all speak English. It’s so different for a single mom living in poverty. We’ve very lucky that we have all of these skills and I work in health care. You have to know the system to ask the right questions to get the right care.

BLOOM: How do you cope with seeing Peter distraught, and not being able to find something to treat his mental illness?

Susan Rappolt: It’s really hard to see him suffer. We’ve been very lucky with our experience of the nursing care he receives and the community care workers. They’re lovely people who are so talented and skilled in trying to support him and soothe him. It is heartbreaking. But it’s not a sudden tragedy. We’ve watched his decline over the last years, and are coming to terms with the doctor’s projection that he would see a physical decline and probably an early death.

Although it’s not a good situation, we have turned over many stones and pushed as hard—and in as many places—as we can, so we know there aren’t other answers. We’re really dealing with palliation now.

BLOOM: Why did you decide to fund the scholarships in Peter’s name?

Susan Rappolt: As a family, we know we can’t make big changes to Pete’s quality of life because of his intractable mental health condition. So we’re focused on providing him with whatever pleasure and support we can.

The focus of the awards is research to promote quality of life in individuals who have chronic, declining and, often, very complex needs. How can we bring joy or alleviate pain in a life that is otherwise pretty miserable?

There’s nothing more medicine can do, but perhaps we can do compensatory things with assistive technology, or social interventions, or by modifying an activity so a person can participate. Often it takes an occupational lens to parse that out. How can we intervene with the person, the occupation or the environment to help someone reach their goals and be happier?

BLOOM: I understand the first gift will fund a scholarship for a PhD student at the Rehabilitation Sciences Institute?

Susan Rappolt: Yes. The PhD part is endowed, and our first student should receive that in September. Our scientists in the RSI will supervise that student in the doctoral stream. The second gift creates a research fund for projects by students doing a master of science in occupational therapy.  

BLOOM: What advice would you offer other siblings who perhaps live at home with their parents, but are concerned about how they may support their brother or sister in the future?

Susan Rappolt: It’s a very challenging scenario, and I don’t know of any families that experience it differently. Especially if the person is still residing at home, the family caregivers need support, in the same way that we’ve developed caregiver protocols in palliative care and stroke. I don’t think the same kind of attention has been paid to family caregivers of individuals with a dual diagnosis, like Peter. I’d like to raise awareness of this issue.

Read More

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

By Louise Kinross

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BLOOM: Where is Fraser now?

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

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

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

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

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

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

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

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

Read More

'I was afraid to make a mistake, so I hid behind the camera'

By Louise Kinross

Sweet Dreams for Chiyo is a film that follows the Ehara family when their toddler Chiyo is diagnosed with Type 1 diabetes. Parents Rhiana and Kaz are filmmakers, so Kaz gets behind the camera as the family—which includes Cai, then three months—adapts to checking Chiyo's blood sugar around the clock and counting every carbohydrate she eats. Missing a hypoglycemic episode—when blood sugar dips dangerously low and the person requires immediate sugar or a high-carbohydrate snack—could be deadly. The film follows the family over a six-year period and airs on CBC on Sunday, February 4 at 9 p.m. BLOOM interviewed Kaz about his role as dad and filmmaker.

BLOOM: Why did you initially begin filming your family when Chiyo was diagnosed?

Kaz Ehara: I think this was my initial coping mechanism. When something unknown happens to me or my family, I often capture it by image. I trained as a photojournalist. I have a Japanese family and when my grandfather developed dementia I started filming as a way to understand what was happening more objectively. I discussed with Rhianna capturing our daily life, and I think we also used the filming sessions as an outlet to express our fears and feelings. A lot of the interviews were conducted at night after the kids went to bed.

BLOOM: We quickly see the strain in the film of monitoring, weighing and recording everything Chiyo eats, and late nights where Rhiana is still awake at 3 or 4 in the morning. I think it’s common in families with chronic conditions for the mother to jump in and become the expert and do all of the health-related tasks, and it’s sometimes harder for dads to find their role.

Kaz Ehara: Rhiana was dealing with the daily treatments so beautifully, and she was definitely comprehending the situation much better than I was. I started losing some confidence, especially in the beginning. With Type 1 diabetes, the stakes are high. If we miss one check at night, it could be fatal. The fear was there. I think mainly I was afraid to make a mistake, so I hid behind the camera.

I think I said in the film that, without realizing it, I started to abuse my position. I was obsessively filming, because that became my coping mechanism.

BLOOM: Well, I think that’s understandable, as it was something you could do well.

Kaz Ehara: I started adding more pressure on Rhiana and now I know it was wrong. I was a filmmaker, and if I’m filming, I’m working. That’s how I justified my actions when I wasn’t supporting her enough.

When Chiyo was born, I changed diapers and fed her and was able to be independent with her. I would compare that with my childhood in Japan with my father, who left for work early in the morning while we were asleep. Because I’m self-employed, my hours are much more flexible. In comparison I thought I was doing really well.

But when Chiyo’s illness hit it put a lot of stress on the family. I didn’t realize the family was close to falling apart. When Rhiana would cry for help, I couldn’t hear her voice, because I was too busy listening to my own inner voice thinking ‘I’m also tired and I’m also working hard.’ I would keep filming, but without any desire to actually watch it.

One day my friend asked how things were going and I decided to watch some interviews. They were emotional and capturing Rhiana’s feelings. It was almost like watching someone else’s life on the screen in a very objective way. I had no baggage attached to me. My inner voice wasn’t there, and I suddenly realized ‘Oh my gosh.’ I felt a pain. That was the turning point. I wanted to change.

BLOOM: Did you or Rhiana have contact with other families whose children have Type 1 diabetes? I don’t recall that in the film.

Kaz Ehara: We had some mixed experiences with that. Our primary reason to get in touch with parents in our community is to get the latest information on technology. We decided that to keep a happy family, we couldn’t let diabetes becomes the main priority in our life. If we started fixating on diabetes care we would neglect our relationship as husband and wife, and as parents. We had very limited mental space in our brain and, for us, we needed some distance.

BLOOM: So you didn’t want diabetes to become the only focus.

Kaz Ehara: I think the word has a strong power and if you talk about certain things over and over again, that becomes part of your identity. We didn’t want our daughter to feel like her identity is with diabetes. We wanted to focus on who she is, and the diabetes is always there to come along with her. We never neglect diabetes or ignore it. But we needed to keep a healthy distance for our sanity, and so we can focus on the bigger picture of keeping our family as happy as possible.

Maybe we are unique in that way. We didn’t want to be 'diabetes parents.' We wanted to be parents first. We have another son who doesn’t have diabetes and we needed to have a bigger perspective than that.

Rhiana was very insightful in that her parents got divorced, while my parents stayed together. I didn’t know the warning signs for divorce, but she said family begins with a strong healthy couple as a foundation. If we neglect our relationship, then the family shakes. When our family was almost falling apart, I was only caring about my sanity and making excuses. I’d say: ‘We don’t have time to go out for a bite’ or ‘We can’t hire a babysitter that we can trust.’

Since then, we started increasing our comfort zone, and suddenly we discovered a babysitter who has Type 1 diabetes. And we started to see that when we changed our attitude, things we thought weren’t possible were. Recently our family went to Mexico for two weeks backpacking in a rural area. It took a lot of preparation, but our world is widening again.

I think I didn’t want to be part of a parent group that was focused only on diabetes.

BLOOM: In one of the scenes in the film, Chiyo needs her insulin pump changed right away—rather than at night when she’s asleep. And she’s crying and hides under the table and begs her mom not to do it. Even your dog Ruby looks really upset. How do you manage those moments when you need to do something that hurts Chiyo, but that in the long-run is necessary to her health?

Kaz Ehara: I was afraid and I had no idea what to say to comfort her. I think I was hiding behind the camera. And even I looked at my little son that day and observed he was much more of a brave participant than I was.

BLOOM: Do you and Rhiana do anything specific to cope with stress?

Kaz Ehara: We try to exercise. Now, I’m able to be independent when it comes to the diabetes care, so we try to give each other space as much as possible. For example, Rhiana went to Guatemala to see her friends who were teaching there. And I went to Japan. Our coping mechanism is to see the world as bigger than ours. We had to come to the realization that what we were dealing with is not the end of the world.

Another thing we try to do is not to fixate on doing everything perfectly. There are over 100 factors that can affect blood sugar, including hormones and emotions. We can’t be reactive to each little incident, but try to see more of the bigger picture. We need to tell each other we’re doing a good job.

BLOOM: The film covers diabetes from a sibling perspective. We can see how knowledgeable Cai is about his sister’s care, and how he often tries to comfort her. But we also see him feeling sad and resentful because Chiyo gets candies as ‘medicine,’ or seems to get more attention than he does. Is there anything you do to meet Cai’s unique needs?

Kaz Ehara: Part of our strategy is that we try to separate the kids as much as we can. For example, we take them out separately, so Cai can have some free time and space separate from the disease.

Rhiana will also ask Cai: ‘Are you tired of being on our team?’ Because we ask him to be on our caregiving team and we need extra eyes to support Chiyo. But before being part of a caregiver team, he’s a child first, and we want to make sure we don’t screw up that priority.

BLOOM: Later in the film you take the night shift and are up till 3 in the morning because Chiyo’s blood sugar is very low.

Kaz Ehara: Usually I took the morning shift and Rhiana stayed up late, and that’s partially because she was a night owl to begin with and I was more of a morning person.

The problem is that sometimes you can’t bring Chiyo’s blood sugar level to the point where you feel comfortable to sleep until 3 or 4 in the morning. We have no idea why the blood sugar is acting this way, but we can’t leave it. If it’s too high, you worry about long-term complications and if it’s too low—this could be fatal.

It feels lonely when you’re the person most responsible. We’ve given up on the idea that it will be easy at some point. We have to accept that it is what it is. Acceptance is very key. In the early days, we kept changing technology with the hopes that it would make things easier. But we only got more data, and not the ability to analyze the data. Too much data is overwhelming, and just makes you fixate more on diabetes.

BLOOM: There’s a moving scene where Chiyo is going off to school carrying a large yellow box for her needles. And Rhiana talks about how she feels like a freak when she’s the only mom who has to stay at birthday parties to count Chiyo’s carbs. How do people who don’t understand diabetes respond to you out in the world?

Kaz Ehara: In the beginning, birthday parties were very difficult. We’d have no idea what food was going to be served, how many carbs were in each food and also, people usually serve buffet style, so we didn’t know how many portions of the items our daughter would eat. We could have talked to the parents before the party, but we didn’t want to be in the way. Rhiana created an art out of carb counting and now she can get in and out quickly.

In general, people have responded very nicely to us. We go on all of Chiyo’s school trips because the nurse can't, and we see how the other kids are helping and are curious about her condition. Chiyo’s friends are very empathetic.

One of the things we worried about is that Chiyo is in a portable outside the main school building. We worried about when she might have to walk to the bathroom, if she got weak. The school created a special buddy system so that whenever they go out of the portable, they go in twos. We are very fortunate with the people around us.

BLOOM: Are there ways that Chiyo’s diabetes has made you a stronger family?

Kaz Ehara: I think we definitely built up a resiliency and became stronger as individuals. I think we also became more sympathetic to others who have different conditions. We talk with our kids about how everyone has something to deal with. We’re not the only ones facing a challenge, and we can help other people. Overall we became stronger as a family because we were dealing with the same challenge as a team. The more experience you have dealing with conditions outside your comfort zone, the more you gain confidence.

BLOOM: What did you learn by filming the movie?

Kaz Ehara: What I learned most was that in order to see things clearly or objectively, I had to be very flexible about the way I’m thinking about myself. One of the things I try now, when Rhiana needs to talk about things, is to be almost silent inside my brain. Instead of trying to understand in my mind, I’m trying to feel her pain.

The biggest thing I learned was that she doesn’t need my advice. She’s the one understanding her situation and her coping mechanisms, but she still needs someone to feel the same pain, or share the experience.

By looking at the footage, I could see that whenever she said something to me, I would say ‘You should do this.’ Rather than giving her reassurance—‘Yes, of course you can do that’—I was giving her opinions.

So now I try to clear my mind, almost like a white canvas, so I can be vulnerable to feel her emotions. Rather than listening to my brain analyzing and coming up with a solution, I try to create a field of empathy towards her.

That’s what I learned from looking at what I was doing in front of the camera.

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

Kaz Ehara: I hope fathers who have a child with a chronic illness, who maybe feel their contribution isn’t enough, that they can project themselves into me and feel the mistake I made. I think mothers in our society carry much more expectations and stress than fathers, so hopefully this film will open the eyes of fathers a bit and make them think about what kind of a father they want to be.

Read More

'We are hungry for neat, tidy stories.' Grief 'is much more messy'

By Louise Kinross

Last year, several parents whose children had died came to Holland Bloorview staff with an idea: They wanted to hold an annual celebration of life at the hospital to recognize their children and to develop supports for bereaved families. “When you walk through the door for the first time after, there’s a sense that you don’t belong anymore,” recalled Bruno Geremia, whose son Matthew died three years ago. “We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Since then, the group hosted its first celebration of life event in Spiral Garden and offered a workshop on coping with the death of a child with Andrea Warnick. Andrea has worked as a pediatric oncology nurse and director of Camp Erin, a bereavement camp for kids. She now works as a grief therapist in private practice with children and adults. BLOOM interviewed Andrea about what it’s like to grieve the death of a child, and how to support parents and siblings.

BLOOM: What would be helpful for our parents to understand about grief?

Andrea Warnick: I think we often simplify grief. A lot of my job is helping people understand that it can involve such a wide range of emotions, and conflicting emotions.

For example, parents may feel heartbroken and relief at the same time, particularly if they’ve been caring for a child for a long time, or if they felt the child was suffering.

We don’t talk enough about guilt. For most of the people I work with aged 10 and up, guilt is often a part of the process. They may feel guilty that they didn’t do things with the person earlier, or that they were somehow responsible for the death. If the death resulted from a car accident, the person may think: ‘If only I had called five minutes earlier, maybe they wouldn’t have been in the accident.’ Perhaps the last time they were together they had a fight.

It’s not uncommon for adults to feel guilty the first time they laugh after their child has died, or the first time they realize they haven’t thought about the child momentarily. I always want to validate that it’s completely okay to still feel gratitude and joy and 'do' sorrow at the same time.

I find children are better able to balance joy and sorrow. They could be at a sibling’s funeral and be devastated one moment, and the next they’re running around with their cousins and having the time of their life.

BLOOM: Do you do a specific type of grief therapy?

Andrea Warnick: No. I’ll often use elements of narrative therapy, but what I do wouldn’t fall under one category. As a pediatric oncology nurse I was on the front end of things as kids were dying and I got to know grief in families really well. I also came to understand there was a massive gap when it came to supporting kids who are grieving.

I like to emphasize that grieving is natural and rooted in our humanness and it’s not pathological. For the vast majority of people, grieving is healthy. Unfortunately, we live in a society that’s death-phobic, and uncomfortable with grief and intense emotions in general.

As a result, families often receive well-intended but misguided advice. For example, it’s not uncommon, a few months after a child has died, for families to feel that people are suggesting they need to ‘move on’ or ‘get over it.’ We have to throw those sayings out the window.

Grief is not about getting over your child and it’s not about forgetting your child. What we want to do is help people figure out how they can stay connected to the person that died in a healthy way.

BLOOM: How do you do that?

Andrea Warnick: By talking about the person. If you’re supporting someone whose child died, let them talk about the child. Don’t tiptoe around talking about her. What often happens is people think ‘I don’t want to bring up the child’s name, because it will make the parent sad.’ What parents tell me is that they're terrified that people will forget their child and stop talking about them.

I always encourage supporters to ask if the person wants to talk about their child. Use the child’s name. You can say ‘This is one of the memories I have’ and share a memory. If you never met the child, you could say ‘I wish I got to meet your child. Can you tell me about him?’

BLOOM: Do parents of children who had disabilities or complex medical problems ever feel that people minimize their grief?

Andrea Warnick: Families where there’s been a prolonged illness, or where a child had a condition their entire life, tend to already be dealing with society underestimating the attachment and importance of the relationship. That gets magnified in death. Often the assumption is that the parent gets their life back, and the death is minimized because it wasn’t a healthy child. I work with a lot of families who are contending with that, on top of all the other complications that come with grieving in our society.

BLOOM: What I’m hearing from you is that grief is individual and personal, and also, that there isn’t an end-point.

Andrea Warnick: We are hungry for neat, tidy stories where we can package things in a linear way. Many people who come in to see me ask ‘How can you help me get to where I need to go?’ Grief doesn’t break down into Elizabeth Kubler-Ross's five stages and an end-point. It’s far more messy than that.

Grief is a process of learning how to live with loss. For most people, the feelings won’t always be as psychologically intense as they are at the beginning. Many get to a point where they learn how to live with the heartbreak in a way that still allows them to experience joy and gratitude.

BLOOM: So it’s about learning to live with pain.

Andrea Warnick: A lot of families come to a point where their pain isn’t as acute. But it’s the missing of the child—of the life the child led and the unlived life—the time they didn’t get with their child, or what their hopes were for the child’s future. People often get the idea that they have to hold onto the pain in order to hold on to the child. A lot of my work is helping them get to a place where they can stay attached to the child, but they don’t have to hold onto the pain.

BLOOM: So pain isn’t a marker of the degree of their love. How long do families usually come to see you?

Andrea Warnick: Sometimes a family comes in just for one or two sessions. They only need validation that they’re on the right track, and that what their gut is telling them is right. I validate for them that we live in a grief-illiterate, death-phobic culture, and that grief is not about ‘getting over a child.’ Sometimes they may see me for years, or not see me for years and come back.

Grief can come and go, and grief bursts can happen for years.

BLOOM: What is a grief burst?

Andrea Warnick: It’s when you’re going about your day and something happens, and a wave of grief washes over you and it feels very intense, like you’re right up in those early days. It’s totally natural, and it happens to everybody. We just don’t talk about it enough.

A parent may be walking through their house and come across something of the child’s that she wasn’t expecting, and it’s a trigger. Or sometimes we don’t know where a grief burst comes from.

Often times families feel as though they’re grieving ‘wrong,’ or that it shouldn’t be this hard. Families need to know that grief bursts are totally natural. As time goes by and they process the death, they may get further apart, but they still come every now and then.

BLOOM: I guess the problem is that we fear grief. We're afraid it’s going to pop up, or that we're going to get consumed in it.

Andrea Warnick: Often, as adults, we’re hesitant to feel the depths of our sorrow. We’re a society that’s so busy. I often come across a dynamic where parents keep themselves very busy, or let themselves feel some pain, but hold the intense sorrow at bay. They can’t see the utility of experiencing it.

My job is to help them understand that feeling emotional pain and longing and grief is actually, in the big picture, going to serve them well. I encourage them to find the time and make space for that. Often it’s when they’re in the shower, or in the car listening to music.

Of course we all feel things to different depths and there isn’t a right degree.

I help people learn that they have the capacity to feel deep sorrow, and that they’ll still be able to get up and continue on with their day.

Teenagers may be afraid that they’ll be sucked down into a black hole. There aren’t any absolutes, and there are situations where people can get stuck. But for the vast majority of people, they can feel extreme sorrow and not get stuck in it. I help people to gain the capacity and confidence to know that they can go to these places, and be able to process death in a healthy way.

BLOOM: I know that the families who started the supports for bereaved families here want their children to be recognized and remembered in a more formal and ongoing way.

Andrea Warnick: The most important thing is that death is acknowledged. Many pediatric hospices have a memory book that everyone passes when they come in. I was recently at the Roger Neilson House in Ottawa, and there was a wall with the names of children who had died. It's called The Wall of Stars.

BLOOM: Several years ago our beloved therapeutic clown Jamie died of a brain tumour, and some inpatient parents asked that their children not be told. This created a very difficult situation for the remaining clown, Helen, who had to field questions from children.

Andrea Warnick: A lot of this is rooted in our death-phobic culture. Parents think ‘I don’t want my children to know, because then they’ll be upset.’ What they don’t realize is that it’s far scarier for a child when a beloved therapeutic clown has gone missing, and no one is saying what’s happened, but people seem upset.

In a situation like that, I would do an education seminar with the parents to reassure them about why it’s important to be honest with children and to use correct language, rather than saying ‘he passed away’ or ‘he is no longer with us.’ I would say: ‘He died from a brain tumour and it isn’t anybody’s fault, and it’s not something you can catch.’

BLOOM: Is talking to children something you addressed in your workshop here in December?

Andrea Warnick: Yes. I wanted to give parents the language to talk to their surviving kids. These children need a narrative if someone asks ‘What happened to your brother?’ They need to have a response, whether they’re comfortable saying ‘He died’ or ‘I don’t want to talk about it.’ I want to make sure the child has that language in their back pocket.

I always use the word ‘die’ with children. When we skirt around it with euphemisms, it’s confusing for kids.

BLOOM: How do you suggest parents explain what death is?

Andrea Warnick: I encourage parents to begin with talking about the physical part. So I say: ‘Death is when the body stops working, and will never work again. And the body doesn’t feel anything anymore.’

Oftentimes, parents don’t want to explain certain things—like cremation. But it’s very important.

Quite often, parents fall into the trap of thinking ‘I’m not going to explain death physically. I’ll give them an existential explanation, like he went to heaven.’ That is very confusing for kids, who think concretely.

I encourage parents to start by explaining the physical aspects of death to children, and then introduce their beliefs once the child has demonstrated an understanding of what happened physically.

BLOOM: What if as a parent you don’t have a belief about what happens to a person, separate from the body?

Andrea Warnick: It is okay to say you don’t know! 

I often have parents tell me: ‘I’m saying she’s gone to heaven, but I don’t know if I believe in heaven.’ 

Kids as young as three, where English is a first language, tend to understand the word ‘mystery,’ so it's a great one to use in these situations. Historically, we've lived with a lot of mystery, and this is a unique time in that if you don’t know the answer to something, you just Google it. It's okay to explain to kids that there are limits to what we can understand as human beings. So in these situations, I coach parents to explain that when it comes to the part of a person that is not the body, it's okay to say: ‘We don’t know what happens, and it’s a mystery.’

A great book for kids aged four to eight years old is When Dinosaurs Die. At the back of the book, they share a lot of different belief systems. It’s good for young children to learn that people believe in different things.

Canadian Virtual Hospice just released a whole website called Kids Grief which I contributed to. It has three modules on how to talk to children and youth about death and dying, as well as webinars and other resources.

Any child in Toronto whose sibling is dying or has died can access free counselling through Dr. Jay Children’s Grief Centre. And Camp Erin, which is a weekend camp for kids, is totally free.

Read More

A letter to myself

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.

Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work. 

The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.

Below is a parent's response to this writing prompt:

Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.

A letter to myself

Don't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.

Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.

Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.

Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.

Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it. 

Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.

When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.

If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.

And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.

Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone. 

Read More

Young carers and other pieces of disability news

Photo by CBC News

By Louise Kinross

Youth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.

Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff, so there’s that huge guilt factor, too,” she says in this eye-opening interview. “Because I am younger than her, I’m getting all these opportunities and stuff that she didn’t have the chance to experience.”

The Change Foundation says as many as one-third of people between the ages of 15 to 24 in Ontario act as caregivers to a family member. You can watch some of their stories here.

Two Toronto programs for siblings of children with disabilities are the Young Carers Program through Toronto Hospice, and a Sibling Support Program at Extend-A-Family.

In other news, check out this interview with Microsoft’s Chief Accessibility Officer Jenny Lay-Flurrie, who is deaf, on AXSChat, where Twitter users discuss accessibility in business.

Microsoft has its own profile on Jenny.

The London, U.K. travel company Accomable, for people who need accessibility, has been bought by Air BnB. That should mean more and better accessibility features in Air BnB listings.

Two new books caught my eye today. The first is Academic Ableism: Disability and Higher Education. That’s it, I thought! Academic ableism. That’s the concept I’ve been trying to articulate. How the culture of academia excludes people with disabilities, especially intellectual disabilities.

Here’s a short passage: “Disability has always been construed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of 'lower education' to justify its work and to ground its exceptionalism, and the physical gates and steps that we find on campuses trace a long history of exclusion.”

The book looks at how universities have helped define, study and devalue disability, but never recognized disability as a source of knowledge.

University of Michigan Press describes it thus: “The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation.” Author Jay Dolmage is associate professor of English at the University of Waterloo.

The book come out Dec. 27.

The other book that intrigued me is A Feminist Ethnography of Secure Wards for Women with Learning Disabilities: Locked Away.

Author Rebecca Fish writes: “This book is an ethnography of locked wards for women with learning disabilities. It represents just a small part of my life the year of my fieldwork...These women had been removed, sometimes a great distance, from their families and friends, and compelled to lead a restricted life under surveillance and control.” Rebecca is a researcher with the Centre for Disability Research at the University of Lancaster in the U.K.

Finally, CanChild is looking for feedback on a new knowledge hub based on its F-words in childhood disability. Check it out and click on the top right to do an evaluation.

Read More

'He's taught me to think differently:' Siblings video

My friend Kristen Huys has produced a candid, tender, illuminating video in which children talk about their brother or sister with a disability. Siblings was produced in support of Beverley School in Toronto. It includes kids of different ages and with different kinds of disabilities. Take a peek and share.

Read More

Confessions of a 'super sister'

By Helen Ries

For many of us, the sibling relationship is the longest and deepest relationship we experience in a lifetime.

This is certainly true for my brother and me. When he was born in 1972 he didn’t come home from the hospital right away. The doctors told my mother they needed to run some tests.

I can still remember my deep disappointment that the promise of a baby brother was taking so long to materialize. When he did finally come home, there was nothing better than dragging this baby around, dressing him up and pretending to feed him.

As we got older, he was my constant shadow. I made sure he was included as we played games with the other kids on our street. He was always there and under my constantly protective eye. I went away to university and then spent many years living in other cities trying to make my way in the world. Our bond faded, but didn’t weaken.

Recently we’ve become very close again.

Sadly, our parents both passed away unexpectedly within a short period of time. My brother came to live with me and my husband, and we became his primary caregivers. I had always known this day would come, but it was never really discussed as it was a painful and seemingly fictitious conversation that I wanted to avoid.

The change was shocking and difficult for all of us. Unlike me, my husband didn’t have a lifetime to anticipate becoming the primary caregiver of a person with Down syndrome.

Sibling caregiving is complex and very different from the parent-child relationship. My brother is his own decision maker. I am responsible but without authority.

As siblings, you are close because of circumstance, not necessarily choice. You are honouring family values and unspoken parental wishes but you also have your own to consider. You walk the grey line of ethical decision making every day and in everything that you do.

I wonder continually: “Is this decision about him, or about me?” 

These conditions are ripe for the emergence of the ‘super sister.' I am a super sister. I am not the only one. There are lots of us out there. Super brothers, too. As a super sister I have taken on this caregiving role with my whole heart and then some. It comes from a place of deep love.

I have shifted a lot of energy that was focused on my own life to my brother’s life. I organize, plan, arrange, boss and frankly dictate so much of my brother’s life. I feel I have to do it this way because I am new to this job and I don’t know how else to do it. If I throw everything I have into it, everything will be all right, right?

I have been a super sister for one-and-a-half years now and I’m thinking that it’s time to retire my cape. Or at the very least find a spot for it in my closet.

Over the last year I’ve learned that even the mightiest of us super sisters can’t make pain go away, do everything right or be wholly responsible for creating a good life for my brother.

When you love someone deeply and for a lifetime you want them to be happy. I think this is especially true when that person has a disability.

I know that the pain my brother has dealt with in a lifetime has superseded my own. I have not faced discrimination and prejudice daily. I have been able to make my own choices, accumulate assets, enjoy good health, have many friends and do so many other things I take for granted. My brother has watched all of this and wondered why life has been different for him. When our parents died, super sister was all over his pain, trying to scrub it off his life because that is what seemed fair.

I could articulate my pain, rationalize my grief, and express my feelings in a way that brought me relief. But my brother could not.

So instead, I provided an endless roster of tonics: from tubs of ice cream to a new cat, from singing childhood songs to taking him on an exotic trip. On a daily basis he got a speech about what our mother and father would have wanted for him, how he shouldn’t be sad, how he has so many good things in his life. One day he told me: “Leave me alone.” The shine fell off my super sister costume that day. After that, I tried to take a back seat.

One day recently someone was rude to my brother on the city bus. Actually it was beyond rude, it was harassment. I overheard it, because we were on the phone together at the time.

I cried and was lost in despair about it. How can people say those things? Don’t they know what he’s been through?

My brother yelled back at the offending passenger: “You are not very nice and you should watch your mouth.”

Later on, when the drama had subsided, I realized that being super sister had been all about me. He doesn’t need super sister. He just needs me. And only sometimes. This letting go is something I’m trying to figure out, and I don’t think I’ve quite got it yet.

It’s hard to accept as a super sister that you can’t erase pain. It’s hard to accept that you have to back off and let people be, let them travel their own path, and allow them to get there in their own time.

Even the deepest and longest relationship in a lifetime has its limits.

Helen Ries is a writer, community activist, and professional consultant, and is also in the role of primary caregiver of her brother, a person with an intellectual disability. Helen’s work aims to build caring communities, better programs and smarter social policies for a more inclusive society. You can connect with Helen on Twitter @helenries  or through her website greatriverconsulting.ca. Or visit The Sibling Network, a Facebook group Helen created to provide information and support to caregiving brothers and sisters.

Read More

New book explores sibling emotions about disability

By Louise Kinross

Perfect is a new children's book about the birth of a baby with a disability, told from the perspective of her older brother. 

In a piece she wrote for The Scottish Book Trust, author Nicola Davies said she "wanted to write a story that gave a space for children's feelings, that allowed the 'unsayable' to be said." 

Nicola, whose mother is deaf, writes that one of our problems is our hesitation to talk about disability. 

"When a disabled child is born, there is a lot of fallout. Everybody has to adjust their expectations and there are, inevitably, powerful feelings involved: disappointment, grief, anger. All sorts of ugly things rear their heads. In time, as the new family member shows that they are a person, not a label, those negative feelings are erased and replaced by love. But pretending that the initial difficulties do not exist isn’t helpful, particularly for young children who may be confused by their own feelings."

The book, suggested for children aged five and up, will be released Nov. 1 by Graffeg Books.

"This is a story about disability and how we see it, but it's also about any sort of difference, and how we make space for diversity in our society," Nicola says.

Stunning illustrations are by Cathy Fisher.

Read More

Why my sister was the best maid of honour

By Kayla Smith

When my sister Christy was born, I had a lot of plans and dreams that grew to fill the empty spaces in my life. I think this happens when little-girl wishes come true. Most of my aspirations were pretty typical. She would be my best friend, my late-night confidante, the student in my classroom, and the mannequin in my hair-salon. My partner in crime. My taste-tester. My maid of honour. 

Fast-forward 10 years, and my sister had been diagnosed with autism and a significant intellectual disability, among other things. Given her exceptionalities, I had to let go of many of these dreams.

I gave up trying to make her sit through my hair experiments and classroom lessons. Sometimes I would talk to her late at night, but it's hard to talk to someone who can't respond. She was pretty selective with her food (for a few years, her meals consisted of bananas and strawberry yogurt), and she didn't know how to keep secrets. Despite all of these things, there is one dream I never gave up on: my sister would be my maid of honour.

So, when Ryan proposed to me, my “proposing” to Christy was the first thing I checked off my list. I didn't think twice about it. I had known my whole life that my sister would be the one to stand next to me on the best day of my life, and, as someone who is usually packed full of worries, I can honestly say there wasn't a doubt in my mind that it was the right (and best) decision. This was all confirmed when Christy began to introduce herself to every person she met as “Kayla's maid of honour” and refer to her navy-blue dress (that was identical to the other bridesmaid dresses) as the “special maid of honour dress.”

Then the questions started coming. The questions I never could have imagined.

“So... who's going to, you know, do the actual maid of honour stuff?”

Since Christy has a hard time with planning, it made sense that this was a concern for some people.

“My mom is the queen of organization,” I told them. “My other bridesmaids will support my sister, and naturally, I will be super-involved with every detail.”

“Well, that's good... but will she be able to make it through the day? Like, what if she can't?”

“Okay, so maybe she won't, or maybe she will.”

To be honest, this didn't matter to me. I wanted my sister there with me. Whether she cried, laughed, sat, stood, took two pictures with me or 20, it wasn't important. I wanted to experience the day with her there, and I knew that's all she wanted too.

“Okay, but seriously, who is going to be your actual maid of honour?”

This is where things started to head south for me, and I was afraid steam might come out my ears.

Fact Number One: I am extremely protective of my sister. I'm usually a very gentle and quiet person. That's just me. But I do remember times in elementary school when I would storm over (as intimidating as a 70-pound Grade 6 kid could be) to anyone who might be bothering Christy and give them a piece of my big-sister mind. Christy is beautiful, hilarious, kind, and a lover of all things neon. She is perfect to me, and anyone who saw otherwise was not welcome around her (or so my 12-year-old self thought).

Needless to say, when people suggested that Christy might not be “good enough” as my maid of honour, it didn't sit well with me.

Despite my confidence in my decision and happy hopes, making Christy my right-hand girl caused a lot of conflict in the nine months leading up to my wedding. My mom and I tried hard to remain organized and lightly delegate the support Christy might need, but a lot of people were really unsure about her capabilities and the role that she should have.

It came to a climax on the day I overheard a conversation that wasn't meant for my ears: “All the stress and problems Kayla is having are because she doesn't have a real maid of honour.”

I cried for almost an entire afternoon. What did they mean she wasn't real?! And how was she in any way responsible for my wedding stress? All wedding plans become stressful at one point or another, and if anyone was responsible for the stress it was me. After all, it was my choice to involve her, right?

I learned a lot of valuable lessons that day. I learned that the ability to forgive is a matter of the heart, and that it’s often hardest to forgive a person for hurting someone close to you. I learned that not everyone will understand my sister like I do, and that is something I am going to have to be okay with. I was also reminded of something that I so often forget: my sister is my personal cheerleader.

That day when my heart broke for the hurtful words directed at Christy, she was the one beside me offering comfort. She gave me multiple hugs, put her arm around me, and confidently told me that I was going to be beautiful on my wedding day. Isn't that what all us girls want to hear in our lowest moments? She also assured me (not for the first time, or last) that she was very excited “to have a brother in the family.” I'd say that's exactly what a bride needs to hear from her maid of honour.

Christy knows me better than almost anyone. Despite her struggles in many areas, she is one of the most intuitive and empathetic people I know, and I am crazy-blessed that I get to walk with her through the adventure of life.

I'm extra grateful that she stood by my side through my entire wedding day. She held my flowers, she saved my twin flower girl and ring bearer, aged 3, when they got lost walking down the aisle, she danced her heart out all night long, and she wrote the most beautiful speech. If I had to do it all over again, I would choose her in a heartbeat.

Christy is my lifelong biggest fan, and she is the best one I could ever ask for.

Read More