The author with her kids. Photo: Courtesy of Kara Melissa Sharp.
Once my daughter began crawling, it was obvious that she wanted to be around her brother—the more he laughed at her antics, the happier she became. Such joy was reassuring because I had cautiously waited four years to bring another child into the family.
Our son has cerebral palsy, which, for him, means he needs a lot of accessibility support; he uses a manual wheelchair and also needs help communicating. Because of that, our daughter needs extra support, too.
Like other typically developing siblings of a child with a special need or disability, my daughter is unavoidably implicated in the complications of her family’s life. She’s spent long periods of time tagging along at medical and therapy appointments, she’s had to entertain herself when our attention is needed elsewhere, she’s inadvertently become a caregiver, and, already at the age of seven, she’s affected by the hushed, worried conversations she overhears between her dad and I.
Balancing the needs of both kids is like a game of tug-of-war, says Meghan Toswell, a social worker at Holland Bloorview Kids Rehabilitation Hospital in Toronto who has a sister with a disability. “There’s one child on each end, going back and forth; that push and pull causes resentment,” she says. “One sibling is getting more time with a parent and the other gets pulled along.”
One of the biggest struggles for kids with siblings who have a special need or disability is that they worry. “Parents often wonder how much is too much information to share, whereas siblings say that they want to know,” says Melissa Ngo, a family support specialist who also works at Holland Bloorview and has a brother with a disability. (Both Ngo and Toswell’s siblings have given consent for them to share this information.) “It helps us worry less and to conceptualize information without coming up with the worst-case scenario.”
When our son has a seizure, which happens a few times a month, we ask our daughter afterwards how she felt or if there’s anything we can explain. We’ve found that her anxiety can be assuaged by knowing some basic facts, having an opportunity to ask questions and being given the opportunity to express her own fears.
In addition to anxiety, kids can sometimes feel resentment toward their siblings with a special need or disability. A 2016 study from the University of Pennsylvania, found that siblings often feel anger or jealousy and resentment if the brother or sister is held to a different set of standards and receives what appears to be preferential treatment—something even typically developing siblings can relate to.
In our house, this plays out with things like chores. We want our daughter to develop the responsibility, co-operation and teamwork that comes with contributing to the household tasks, but she gets frustrated when she sees that her brother can’t contribute in the same way. She says it’s unfair, and so we try to come up with jobs they can do together, like matching socks or clearing the table.
A child with a special need takes a lot of your time and attention, so it’s important to prioritize one-on-one time with the typically developing sibling so they know you care about them as an individual.
Toswell suggests parents give each sibling their time to shine to help mitigate feelings of resentment. “Focus on what it is the sibling is interested in,” she says. For example, when her parents were busy with her sister growing up, she had caring grandparents who made sure she always made it to her sports practices. “Even small victories will push kids to be motivated to be involved with their sibling and also feel like they have something for themselves.”
In our family, we work hard to nurture our daughter’s dreams while providing opportunities for both children to do activities together. She takes gymnastics on her own, but she participates in all-abilities soccer with her brother as well.
Parents can also foster equality by treating their kids the same whenever possible. For Angela Harris, a nurse and mom of two from Burlington, Ont., growing up with a sister with Down syndrome and a slew of other serious medical conditions meant her sister required constant medical care. She was often in the hospital for long periods of time and had frequent brushes with death. But Harris’s parents refused to see her health and acute-care needs as a burden or a limitation. “Despite her setbacks, my parents never gave up keeping our day-to-day life as typical as possible,” says Harris. “[My] never told [us] we could not do or have something based on her needs; therefore, we have never been resentful of her.”
Persistence is something Harris has continued to model as she raises her daughter with multiple disabilities and her typically developed son. Armed with an attitude of “how can I” and not “I can’t,” her daughter is an honours student who plays in her high school band and is a great sledge hockey player.
While having a sibling with a special need or disability presents challenges, it also comes with opportunities. Researchers at the University of Michigan found that siblings of kids with special needs often develop resilience, empathy, patience, compassion, acceptance of differences and other positive attributes as a direct result of the family dynamic.
Lucas Randolph has three kids, two with autism. “I’ve taught my children that it’s perfectly OK if things don’t go how we expect,” he says. This has helped Randolph’s neurotypical child find happiness in an increasingly chaotic environment. “His teachers say he’s flexible and willing to play with other children on their own terms and that he is a natural and empathetic leader, far beyond his own age group.”
And there’s research to back this up. A recent study from Tel Aviv University and University of Haifa found that relationships among children with siblings who have a special need were more supportive than those among typically developed brothers and sisters. “Specifically, we found that children with siblings with intellectual disabilities scored higher on empathy and closeness and scored lower on conflict and rivalry than those with typically developing siblings,” reports lead author Anat Zaidman-Zait.
“We are shaped a lot by our siblings for the better,” says Toswell. “My sister was predicted to live until she was 12, and this year she’ll turn 25. Her strength and determination has made me resilient and helped me believe that I can do more than I think; she impacts everything I do.” For Toswell, having a sibling with a disability has given her a different life perspective, and it’s one that she wouldn’t change.
According to Ngo, the family support specialist, “siblings potentially have the longest-lasting relationship in the life [of] and will have to take on duties during many life transitions, from under the age of 18, into adulthood, and even crossing into the senior ages. They need support to emotionally cope and handle things over their lifetime.”
Support groups provide opportunities to create friendships with peers who understand the challenges while also acting as respite from casual caregiving. “Siblings feel less isolated when they meet others who share their experience,” says Victoria Rombos, a Holland Bloorview sibling support group administrator. “It provides a safe space for them to speak openly about their feelings and share what it is like to be the sibling of someone with a disability.”
Because siblings can often feel big feelings and need outlets for expressing them, parents should encourage kids toward activities like drawing, journalling, physical activity or speaking with a support group or counsellor.
While life can sometimes be tough for our daughter, it’s been amazing to see her take on caregiving for her brother as part of her identity.
For Christmas last year, she received two dolls, one of them a Barbie in a wheelchair. As she played with them, she used the other doll to help Barbie transfer into her wheelchair. “Is she Barbie’s caregiver?” her dad asked. “No,” she replied. “She’s her sister.”
Young Carers Program Based in Toronto, this program provides therapeutic and recreational activities to help young caregivers.
Holland Bloorview Sibling Support Group These Toronto-based groups are facilitated by an adult sibling of a person with a disability or special need and are open to siblings of children with any disability, complex medical need or dual diagnosis.
The Sibling Collaborative This network offers support to adult siblings with special needs throughout Canada, with an online community and mentoring program.