When it comes to siblings, support is key

And it’s a reality Daniel and Melissa know all too well.

While both are staff members at Holland Bloorview, both are also siblings of people with disabilities: Daniel for his older sister, and Melissa for her younger brother.

That’s why it was no surprise, when both were tasked with being consultants on the project team for Holland Bloorview’s SibKit: a 50-page booklet for siblings of children who experience brain injury.

Funded by the Centre for Leadership and lead by Kathy, a social worker and Vibhuti, a research assistant, the resource is used to help siblings process their feelings as they handle being both a sibling and a caregiver. 

"As integral members of families, brothers and sisters can struggle with the emotional impact of pediatric acquired brain injuries. Siblings can feel lost and confused, isolated from their injured brother or sister during hospitalization, and cut off from information," says Kathy.

"Interprofessional colleagues, including Daniel and Melissa, as well as siblings, clients and families put together the SibKit booklet and online versions, with the intent to respond to the needs of off-site siblings." 

To date 500 copies of the SibKit have been distributed to families on the brain injury rehabilitation unit, with the online version expected to be available later this spring.

Included in the SibKit are sections explaining how different parts of the brain work, and what changes happen when they’re injured; a section for siblings to share their story with drawings and words; and sections that elaborate on common emotions they may feel. 

And It's a tool, Daniel and Melissa say, that’s needed.

Carving out a safe space for siblings to understand and process their feelings would have been a great resource for them growing up. But they hope through Holland Bloorview’s workshops and now the SibKit, siblings of kids with disabilities will feel less alone and less like a “rare unicorn,” thanks to the support and community the hospital is continually building.  

Growing up, what was your favourite thing to do with your sibling?

Daniel: My sister is10 years older than me, so when I was quite young, she always wanted us to be best friends. Then when she got older, she moved to Toronto and I would love when I visited her because she was this super cool, big sister and she would take me out and show me around. I just loved being able have that quality time together.

Melissa: My brother and I did pretty much everything together but we both had the same sense of humour and a need to run around. We’d be outside a lot. Goofing around in the backyard, going to the park, or doing anything sport-related was my favourite thing to do. We just loved to spend all our energy and also share a laugh at the same.

Why did you consult for the Sib Kit?

D: They really wanted us to come in and look at the nuts and bolts, help give perspective where possible. The organization is really starting to look at siblings in that caregiver light a lot more, and that’s one of the reasons that we were brought in; to use our lived and professional experiences to inform the work.

M:Kathy and Laura, one of the clinicians involved in the project, wanted to make sure that it could be framed in the sibling voice and incorporate things that would really be resonating so that siblings could use it as a resource and a tool to help them along their journey.

Was there anything specifically within the kit, from a sibling’s perspective, that you were like, ‘This needs to be in here’?

D: The Sib Kit we worked on was specific for siblings of kids with acquired brain injuries, but we also wanted to make sure that the resources that we were providing would also be applicable or useable for any kind of sibling. It was really about framing it from a kid's perspective, using kid-friendly language, and directing it towards the sibling themselves.

We both talked about how we really want siblings to own their narrative, their voice, their story, and give them the opportunity to think through how they would want to tell their story, but also giving them the permission to say they don't have to talk about it if they don’t want to.

Do you have any advice for other siblings or families about how they can cope through COVID-19?

D: I think now more than ever, self-care is so crucial. It’s important to acknowledge that your feelings and your stresses right now are all very valid and very important. There's no wrong way to feel. I think it's about finding the tools and support to help navigate those feelings. And whether those feelings are because of COVID-19 or whether it's specific to your sibling and your interaction or your family dynamic, taking advantage of any support—whether it’s your family coming together to talk or do something fun to destress or FaceTiming a friend—taking care of yourself is important.

M: Siblings may already have a lot of things that we tend to worry about or are responsible for, more than the average person. And those feelings might be heightened [during COVID-19] because maybe your sibling is more at risk or maybe parents are at risk—it's okay to feel those feelings. It can be really overwhelming when you're on social media a lot and siblings may be doing that a lot more than parents, potentially. Siblings might be the people who are getting inundated with a lot of different pieces of information from different sources. Knowing where to find trustworthy information is important; however, it's also important to balance being connected, but also taking a break, and knowing where you can find mental health support if needed.

Any other advice you’d give parents and siblings as they navigate day to day life?

D: My advice for parents and caregivers it to have open honest conversations with your whole family, with the client, with the sibling. Talk about your feelings. Ask questions. Lots of parents are so worried about putting too much pressure on their kids or taking away their childhood that they don’t want to say too much. The reality is that most siblings are much more aware of the realities of what their lives are than parents are comfortable thinking about.

My advice for siblings is to find that peer support network: ask questions and connect with Holland Bloorview. The support that comes from being around other siblings and hearing their stories and feeling that sense of community is so strong and impactful.

M: Model self-care for your kids. It helps when we see moms and dads take those self-care breaks and model it for us because then we understand it’s important and valuable to our experience as well. And my advice for siblings is: your experience may be different from others, but it is valid nonetheless. There’s someone out there who might ‘get’ your experience, and it’s important to connect with each other. We need those spaces where we can choose to be present or to share our sibling experiences.