Eric Goll along with Helen Ries and Becky Rossi, all siblings of a person with an intellectual disability, carried out an interesting research study about the top concerns of siblings of adults with intellectual disabilities.
Here is what they found.
Top issues identified:
- Mental health of their disabled sibling and their parents.
- Managing relationships
- Emotional Support for themselves
Farther down the list of concerns was funding and support for their brother or sister. Isn’t that interesting?!
The research also found that the intensity of support increasing over the years though it decreased temporarily in the 30-39 age group. Perhaps (though no information was collected on this) building a family and a career during that time affecting how much support sisters and brothers could or wanted to provide at that stage life.
The researchers also looked at information from Census Canada about what percentage of people lived with their parents as adults. Census Canada collects all kinds of interesting information about the population.
The 2016 Census data showed that:
- 35% of young adults (20-32 years old) in general still live with their parents.
- 86% of young adults with disabilities still live with their parents.
- 63% of adults with disabilities in their 30’s still live with their parents.
- 60% of adults with disabilities in their 40’s still live with their parents.
- 16% of adults with disabilities in their 50’s still live with their parents.
Eric points out, by looking at this data we can pretty much predict a crisis for people with disabilities in their 50’s and their aging parents. If parents are living with their sons and daughters until they just can’t provide the care anymore then a crisis is likely at the point of transition. Everyone might be better off if people thought about the issue of home for their loved ones before the time when parents are just too elderly to manage supports anymore.
If you are interested in thinking about the issue of home for people with disabilities, check out the editorial that I wrote here.
So where does that leave us?
Well, Eric and his colleagues have some suggestions.
Parents, involve all your kids in these discussions early. When you learn about how to support your child with a disability, find ways of sharing that in some capacity with your other kids and family members. If your kids are young, this might just mean being sure to have conversations around them – not privately – about support issues. As they get older, make information available.
Gather people together before there is a crisis.
Consider sharing information about where your kids can get together with other kids and families that include a person with a disability. I was shocked to hear that Eric’s experience and his research shows that often siblings aren’t meeting other siblings until they are adults.
While getting advice, support and encouragement from friends in your general community is important and valuable, often they don’t fully get it. Talking to other people who understand the joys and the challenges of your family life can be really helpful.
To address this need, Eric and his colleagues launched the Sibling Collaborative. The Sibling Collaborative takes a strengths-based approach to their mission: “Think differently. Feel differently. Live differently.” The Sibling Collaborative offers in-person and online resources and opportunities to network to adult siblings of people with intellectual disabilities.
Helen Ries has published a short e-book of stories told from the perspective of brothers and sisters of adults with intellectual disabilities.
You can see in those stories great love but also some frustration with their parents.
In my conversation with Eric we discussed two areas that parents might want to reflect on.
The first is learned helplessness. Learned helplessness is when people become incompetent, not because they don’t have the capacity to learn something, but because those things have always been done for them or they have always been told that they aren’t able to learn them.
As parents, we probably do an awful lot for our kids that they could learn to do for themselves. We probably do it without even realizing it. Can you imagine all the problems that this creates for our children? 😫
Eric points out that we all learn by doing. And he acknowledges that it is probably easier for brothers and sisters to watch their siblings take risks while they learn than it is for parents.
Eric’s advice for parents? Present reasonable challenges to your kids with disabilities and help them to reach their full potential!
Thanks for Listening!
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Special thanks to Eric Goll for joining me this week. Until next time!
Started young with a sister with a disability, amazing mentors and a strong mother with a vision. Now a mother to two sons, one of whom has a disability, a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. Genia’s a registered midwife, International Board Certified Lactation Consultant, MSc in Evidence-Based Health Care (student), Speaker, Presenter, Podcast host, and founder of Good Things in Life which offers resources, courses and networking opportunities for a community of parents with a shared vision of the good things in life for their children with disabilities.