"What keeps us awake at night is knowing we won't be here forever. And always questioning whether we're doing the right thing. We want Carol to have a life that is rich and includes all the things she does and one where she is protected – whether we're there or not."Pat Ellingson (left) with sister Carol (centre) and partner Carolyn (right)
The above passage is from an interview I did with Pat Ellingson, creative head of children's media at TVO, Ontario's public education media group. Pat's sister Carol came to live with Pat and her partner Carolyn five years ago, when she was 45. Carol – who has a developmental disability – had lived with her mother in Vancouver until she died. She lived for a short time with another of her sisters, but it didn't work out. So Pat brought Carol to Ontario.
As I interviewed Pat, it struck me that she shared the same feelings and concerns for her sister as I have for my son: the love and commitment, the pride, and the constant wrestling with how to create a rich and safe life for a family member who is marginalized and diminished in our culture: "I don't think you can ever assume that the system will take good and appropriate care of your sibling with special needs," Pat said.
Much research has been done about the positive and negative impacts of a child with a disability on brothers and sisters. A 2003 study in the Journal of Family Nursing found school-age children who have siblings with disabilities scored significantly higher in co-operation, assertiveness and self-control than peers with typically-developing brothers and sisters. Yet we also know siblings may resent the attention the child with special needs receives; feel guilty they were spared the disability; and worry about how their sibling is treated. Siblings benefit from the same kind of peer support that parents find in support groups, but often don't have access to sibling groups.
Professionals tell us to make plans for our child's future care so that siblings don't feel responsible and will never have to assume the role of primary caregiver. But when the system is strained to provide even basic supports, is that realistic? I hope my other children play a leading role in Ben's life as adults and step up to the plate to ensure he lives a good life when we're gone. I hope they show the commitment, compassion and vision I see in Pat, which I believe is unusual.
In the June print issue of BLOOM we'll run a full interview with Pat about growing up with her sister Carol, making the decision to become her primary caregiver later in life, and current efforts to support Carol as she moves into a Community Living apartment.
If you’re in Toronto, you may be interested in a sibling workshop for parents and brothers and sisters of a child with a disability at Bloorview on April 27. Contact email@example.com for more information.