"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 jchiu@bloorview.ca for more information.
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 jchiu@bloorview.ca for more information.
Thanks for this post. I was surprised to read that "professionals" advise parents to ensure that siblings won't be taking care of each other. That seems like part of what it means to be a family.
ReplyDeleteAmy Julia
Hi Amy Julia! The advice is given because it's thought that siblings will be highly anxious about the thought of needing to care for their sibling in the future. So the idea is that you reassure the siblings if you make plans independent of the siblings and you reassure them that everything is going to be taken care of for the child with a disability. However, I don't think that's realistic for many families (depending on finances and the degree of disability, etc.) I think it generally takes the bond of family ties to ensure someone gets the best care. Louise
ReplyDeleteI have a story about this issue and my own sons that I think I will post tonight with a link back to your post. Perhaps we can get a real dialogue going -- it's such an important topic and one with very little visibility. Pat, Carol and Carolyn are so inspiring and lend new meaning to family. Thank you for sharing them with us!
ReplyDeleteI too have a story about siblings and responsibility that I need to write...someday. Please do post yours Elizabeth!
ReplyDeleteBut briefly, when Oscar was born part of my grief was for Abe and his loss. I've made a point over the years not to burden Abe (and now Ruby) with thoughts of future care of Oscar. Abe, 11, has already suffered a lot of anger and depression resulting from Oscar's disability -- we have spent years getting to this stable place where Abe can truly love and appreciate Oscar without feeling guilty, responsible, or angry. He is generally more confident now and engaging better with his own peers too. Part of our approach was lifting the burden of responsibility that Abe placed on himself. We are starting over again now with Ruby (5) who is now experiencing the anger.
I feel that since my husband and I made the decision to have a 2nd child who ended up having a disability, WE need to bear the responsibility for Oscar's care, setting up things so that Abe and Ruby can be "just" Oscar's siblings when we are no longer around. I just don't think it is fair to expect the siblings to fill our (humongous) shoes when these were not their decisions. But I realize that that is perhaps naive, since, as you say, Louise, the system is very strained. I'm still hopeful though.
Ultimately, while I hope Abe, Oscar and Ruby will always have close and loving relationships I also hope that Abe and Ruby can live their own lives and make decisions that don't revolve completely around Oscar's needs. I hope they can live where they want and raise their kids in a house with an unlocked fridge. Maybe even be able to give their kids a chocolate bunny on Easter? (Talk about wanting my kids to live out MY dreams...)
Anyway, thanks for raising this important topic. I definitely will look forward to the full interview!
Hi Mary -- Thanks so much for your message! I have never talked to my other children (aged 11-13) about Ben's future care. I think the idea of removing the responsibility from siblings of primary caregiving after we die is a good one, I just can't fathom how it would be practical because I don't like any of the supported living options I see for Ben. I would love to hear about whether you've done specific planning for Oscar -- how do you envision his future when you are not here? Who would be his primary caregiver? How would you ensure that your wishes for his care were followed? This is something that I haven't spent a lot of time thinking about. Pat shared that they looked into supported living for Carol before she moved to Ontario, and they were told that unless she was homeless, she wouldn't be accepted into the program (she was living with a sister at the time, and also had her job -- which appeared to work against her getting supports). I can't imagine someone who doesn't have family ties having Ben's best interests at heart -- particularly when the resources are so strained. I also see the necessity of building a circle of friends for Ben and hope that perhaps that is one way to create people in his life who will play an active role when we are gone.
ReplyDeletePlease share what plans you've put in place because I would love to hear about them! Thanks!
wow what a nice blog I'm so happy to have found it. Maybe my two boys 9 and 7 would benefit from a sibling workshop. I'll have to look into it and see what ages it is geared for. My third child has special needs and I hope one day they will want to care for her if I don't live forever (that's my plan right now to care my dear Ashley as long as I can.) I've never talked to them about that I think that is something we will discuss much into the future. Ashley is blessed with 3 amazing brothers and their lives are enriched because of her. I'll be following your blog now and posting a link here to.
ReplyDeleteMy obstetrician told me the most important thing to do for my daughter (with CP) was to give her as many siblings as possible. He has five children, one with autism, so I think he was speaking from experience.
ReplyDeleteI honestly don't trust the system , broken or otherwise to love. A system can 'care for', but only family and friends can 'care about'.
SO I am busy cultivating a culture of loving care in my family. And trying for number 5.