I have been preaching about the value of peer support for families who have children with differences for a very long time. Parents inherently know that peer support is valuable. Professionals can be leery of such endeavours, citing risk and encroachment on professional boundaries. That’s why I continue preaching. Peer support is not just a ‘nice thing to do’ – research shows that it helps parents gain confidence and hope in challenging situations.
OK, let’s agree that it is a good idea to connect parents together. How do we do that? Well, we first need something to connect parents to. Informal connections do occur (in my case when Aaron was born, the friend of a woman I worked with), but that was just plain luck.
The Visiting Parents Team was created almost 9 years ago for families who have new babies with Down syndrome. This is a volunteer-led and run program which receives funding from the Edmonton Down Syndrome Society. It is the only formal community-based peer support program of its kind in Alberta. The two coordinators of the program are Shelley Wywal and Valerie Myrmo who are trained and experienced. And they are moms who volunteer their time to do this important work. They receive a referral directly from a family or a health professional. They then match that family to two trained volunteers from their team, and a visit takes place. Sometimes connections are by phone or email. This program is, at its core, family-centred, and is flexible to respond to individual family needs. (If you’d like more information, email the family leaders at firstname.lastname@example.org).
There is a need to continually train new members for Visiting Parents Team. I did visits for many years, until Aaron got older, and I became immersed in school and the memories of the early days started to fade. Ideally, volunteers who visit have a child between 2 and 5 years old so their memories and knowledge of early services are fresh.
I spoke at Visiting Parents Team training on Saturday. I am so proud of this program that I co-founded with two other moms nine years ago. It continues to thrive and grow due to the leadership from Shelley and Valerie and the commitment of the other volunteers on the team. There have been 68 in-person visits to new families with babies with Down syndrome, and our formal evaluation last year demonstrated a 94% satisfaction rate. Families who received peer support commented:
“The doctors and nurses made me feel like having a baby with Down syndrome was a burden on our family. In contrast, VPT said “congratulations!” as her opening remarks”
“Letting me know that my wonderful and perfect child is just that, wonderful and perfect.”
My call to action is that all families with an unexpected diagnosis are given the option to be connected up with their peers in the early days. This can through NICUs, on maternity units, in rehab facilities, via Home Care, in Early Intervention – anywhere families who have babies or children with unexpected news can be found.
Peer support must be delivered by peers, not professionals. With training and experience, this is one thing that families can do all by themselves.