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EDSS History | Inspiring Endless Potential
The beginnings of the Edmonton Down Syndrome Society took place when a group of four families, all who had new babies with Down syndrome, found themselves on a waitlist for services from the Edmonton Early Intervention Program (EEIP).
To support the group, the EEIP began a monthly “playgroup” at Mayfield School to bring us together to ask questions and share concerns about our babies, Down syndrome, and the future. It was wonderful being with moms and little ones on a shared journey. When we began receiving services from Early Intervention, the playgroup was discontinued. We missed it and decided to continue meeting to share information and support each other as our kids grew and learned new skills – on their own time. It was so wonderful to rejoice when each little one learned to roll, or sit – or say the first word in a safe and supportive environment, without comparison to the “normal milestones”. We knew we deserved better information at birth and also wanted access to “new” research in education and medical care for our children that was really exploding at the time. Coincidentally, the Canadian Down Syndrome Society had formed the year prior, so we quickly established a relationship with the Society and were able utilize its information and expertise to keep us up-to-date.
The Edmonton Down Syndrome Family Support Group was officially started in 1988 by our four families. We met in a playroom at the Glenrose Hospital on the second Saturday of the month. We came as families, moms, dads, the odd grandparent and all the kids in tow. We soon learned how different each child was, and how much they resembled their own families. We started by sharing information about services, information we had read or practical suggestions on child rearing experiences. We talked about how to motivate our kids to move and learn. We were very informal; we had backyard barbecues and celebrated our kid’s successes. Initially a small group of parents shared a vision and met together over coffee. As the group evolved, we borrowed space for a monthly meeting in a basement room of the Glenrose Rehabilitation Hospital to start inviting teachers, doctors and anyone we could think of, to share information. We found some baby-sitters through the Young Women’s Christian Association (YWCA) Family Relief Service to look after the children while the parents met. The EEIP let new families know that we met on a regular basis and encouraged families to contact us if they were interested.
We grew and we began wanting to do more for our kids and our families. We evolved to the point of organizing a Volunteer Board of Directors made up of community members and have been blessed with many capable parents contributing their time and energy to help us meet the needs of families and their children. In 1995 we incorporated as a charitable organization under the name the Edmonton Down Syndrome Society and hosted our first national conference for the Canadian Down Syndrome Society (CDSS). We have since hosted CDSS National Conferences in 1995, 2001 and again in 2015.
Since 1995 we have had tremendous financial support from the Daytona Group of Companies. They were there at the beginning to help us raise funds for our first National Conference and continue to be one of our strongest community supporters to this day, raising very significant dollars to support direct programming and therapies for our children.
In 2008, in partnership with Capital Health (now Alberta Health Services), the EDSS funded a pilot project to develop a Pediatric Down Syndrome Medical Clinic at the Stollery Children’s Hospital. We provided funding to hire a full-time nurse over 2 years to support the clinic. This project was so successful that after 2 years the program received full funding through Alberta Health Services and is now an integral part of health care for the Down syndrome population. The Edmonton Down Syndrome Clinic's caseload now exceeds 500 children.
After years of volunteer time, 2009 was the year to take our next steps. We hired our first staff member and 4 months later opened our Centre for Excellence at 9139-39 Avenue NW. A major focus has been providing quality programming, such as speech therapy for our children as well as information for families – and opportunities for social and activity programs for all families and ages.
Our full time Family Support Liaison assists families in our mandated area from Red Deer north to the Territories, to navigate the many systems including government, education, and health and social networks and programs that our families come into contact with on a regular basis. We are proud to collaborate with other like-minded organizations such as the Gateway Association locally, Inclusion Alberta provincially, and the Canadian Down Syndrome Society nationally.