Others may call this page volunteer work but I like the term unpaid work to validate that what I do is indeed work. Even if I don’t get paid for it. This is a value and worth concept.
Here’s what I do:
- I am a Co-Coordinator of the Edmonton Down Syndrome Society’s Visiting Parents Program. This means I connect with parents who have a baby with a new diagnosis with Down syndrome. Then I match them up for a visit from two parents on the Visiting Parents Team. Sometimes I do visits, too, which I love. We see parents in hospitals, in NICU’s, in coffee shops, in their homes. I also give presentations to health providers about the Value of Parent to Parent Support and Sharing the News (disclosing a diagnosis of a disability) and also Gifts Gleaned and Lessons Learned from having a child with a disability.
- I chair the Steering Committee of the Canadian Family Advisory Network, which is a national organization dedicated to collaboration with the health sector to create family centered care for children and youth across Canada.
- I am a member of the Glenrose Rehabilitation Hospital’s Parent Advisory Council. This group advises senior administration about how to make the facility more family centered. I also give presentations to clinicians in conjunction with this role.
