often overlooked, siblings are key caregivers
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melissa ngo has been a caregiver to her brother scott since he was diagnosed with autism spectrum disorder.
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melissa ngo remembers going to her brother’s school meetings alongside their parents when she was 12 years old. her then 10-year-old brother scott was diagnosed with autism spectrum disorder at the age of two, and ngo wanted to help his teachers come up with activities so he could thrive in the classroom, so she tagged along and gave suggestions.
a sibling relationship where a brother or sister is living with a disability often involves the typically developing sibling taking on a care giving role. for this reason, families and advocates say siblings — both children and adults — need support and shouldn’t be left out of the conversation when it comes to caring for a person with a disability.
meghan toswell is a social worker at holland bloorview kids rehabilitation hospital in toronto and says parents often worry their young child is too involved in their sibling’s care.
“what i usually say to them is that more often than not, the sibling wants to be involved in the care giving process so it’s really important to recognize and validate how they’re feeling so that you can understand the different fears that sometimes come along with being a sibling,” says toswell.
encouraging the sibling to find meaningful independent activities can be helpful, and something toswell practiced in her own life. she has a younger sister living with cerebral palsy and epilepsy. growing up, toswell loved to swim, and even competed at a national level, but her sister only watched her swim a handful of times.
“it was my space and that was my activity that i liked to do so i protected it for much of my life,” she says.
toswell also encourages parents to carve out one-on-one time with the typically developing sibling to help them feel special and supported.
this is what andrea haefele started doing five years ago. haefele has a 12-year-old daughter living with autism and a rare genetic disorder called pitt hopkins syndrome which means she needs around-the-clock support. she also has a typically developing son who is nine years old, who she describes as, “a 30-year-old man in a nine-year-old body.” her son is very attentive to her daughter’s needs and has always assumed a caregiving role.
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but when he first went to school at the age of four, he started acting out.
“it was almost like he discovered school as his respite,” says haefele. “his role is to always watch out for his sister, but she wasn’t there, so it was almost like he didn’t have to be a parent anymore.”
it was then she realized her son needed alone time with her and her husband. since then, they set aside an hour or two a few times a week to do any activity their son chooses whether that be playing soccer or watching a movie.
every sibling relationship is different and for helen ries, she only started to think of herself as her brother’s caregiver in her 40s when her mother suddenly died. her brother is a person with down syndrome and for most of her adult life, their relationship looked fairly typical — the duo would go out for dinner together, garden together and visit one another when they lived in different cities. but when her mom died seven years ago, ries moved in with her brother and quickly assumed the role of his primary care giver.
“it changed my life in a lot of ways, i couldn’t work the same way anymore, so i had to find a new way of working,” says ries. “i love my brother very much and we get along really well, but it’s a traumatic life shift to suddenly or not so suddenly find yourself in a position of being responsible for the life of another person.”
it was during this period of transition that ries considered how important it is for siblings to be connected — she figured she wasn’t the only one hitting barriers as she tried to navigate caring for her brother. countries like england and australia have had sibling-specific organizations for decades and ries felt it was time for canada to follow suit.
with this in mind ries co-founded the sibling collaborative, which she describes as “a passion project that has become quite significant.” the collaborative has connected hundreds of adults across canada who have a sibling living with a disability, offering meets up, workshops and information sessions (now done virtually because of the pandemic).
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“when parents get a diagnosis for their child, they connect immediately with a down syndrome group or an autism group for example, but siblings don’t connect with each other until maybe there is a crisis, if at all,” says ries. “the sibling collaborative gives them a way to connect, and we’ve also been working on building resources that cater to what siblings want to know.”
when the collaborative launched two years ago, ries sent out a survey to get a sense of exactly what siblings struggle with — an area that hasn’t been well studied —and partnered with researchers at the centre for addiction and mental health to analyze the responses. they found that typically developing siblings struggle finding mental health supports for themselves, their sibling and their parents. they also worry about finances and finding housing for their siblings.
one of the barriers, says university of calgary researcher dr. brianne redquest who was lead author of the study, is that policy makers and service providers aren’t always aware of what adults deem important when looking after a sibling living with a disability.
“siblings are a wealth of information that can really make care more effective, but there’s such a disconnect between them and decision makers and it’s frustrating because how loud do siblings have to scream before they’re included,” says redquest.
ngo is now 32-years-old and continues to advocate for her brother. in many ways things have come full circle — she works as a family support specialist at holland bloorview kids rehabilitation hospital where she spent a lot of time as a kid with her brother, and was recently involved in developing a sibling toolkit. ngo and scott still share a close relationship and the duo enjoying hiking and going to the library together.
but new challenges are on the horizon — scott lives with their parents and ngo says they’ve recently started to discuss what life will look like when her parents can no longer take care of him. she still struggles with putting herself first after a lifetime of always prioritizing her brother, but she’s getting better at scheduling personal time.
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“there’s no way that i could see myself being separate from scott; i will always see myself as a caregiver to him and a sister to him and somebody who will support him into the future,” says ngo. “we are very close and we both help each other in different ways.”
editor’s note: scott provided his permission for melissa to speak about his diagnosis for this story.
vanessa hrvatin is a vancouver-based writer.
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