Founding Open Arms Play Group
When my daughter Karley was just a few months old a resource available to my family, for my daughter with Down syndrome, was a community early intervention playgroup. The group consisted of parents and their babies and toddlers. The children had varying disability diagnoses but we all lived in the same county. There were only a few babies in the group, in 2003, with Down syndrome. One mom Sydney and I immediately bonded. Her son Aiden and my daughter were close in age, so were our older daughters, and we both had similar feelings about the lack of Down syndrome specific resources in our area. We valued the playgroup we were attending but felt there was potential for something more. It was then that we decided to start our own play group specifically for families with babies and toddlers who have Down syndrome.
We wanted to learn from parents who had children older than ours and wanted to see what children, other than our own, with Down syndrome were like. It was our goal to get connected with other local families through the play group and facilitate connections for them as well. Sydney and I felt isolated and didn't want others to feel that way. The ideas and stories we shared with each other were a lifeline and we felt other families might be craving their own personal relationship with another family for support as well. It was important to us to bring the community of families with children who had Down syndrome together. We knew if we felt strongly about sharing our experiences and learning from other's experiences than there were probably other parents out there who did too.
A local church opened their doors to us and let us have our play group there.We reached out by calling and emailing our flyer to local CACOON nurses, labor and delivery departments, cardiologists, the Northwest Down Syndrome Association and any other group we could think of or find that may come in contact with a family who had a child with Down syndrome. The playgroup was held once a month and every month a new family would join us. The group steadily grew and we decided to research grants to try and fund some resources necessary to keep the group going. We received a grant that helped pay for some toys and soft tumbling mats for the babies and toddlers to safely play on. We also met with the NWDSA board and received a mini-grant to help the playgroup financially.
The mini-grant from the Northwest Down Syndrome Association was used to pay for monthly snacks, printing resource materials, and other regular expenses. This opportunity helped grow and formalize the play group. With formalities came the time to come up with a name. We had a few in mind but learned about People First Language and decided on Open Arms Play Group. It fit because not only did we want society to embrace our children with open arms but we also wanted families to feel they could come to a group that met them where they were at with open arms. Eventually, in 2004 our parent-driven play group became part of the NWDSA.
Open Arms Play Group, officially under the umbrella of NWDSA, for children birth through five, with Down syndrome and their family, focused on giving parents opportunities to connect with each other on a personal level by asking questions, sharing ideas, and learning from each others experiences. Open Arms continued to be a fun place where children enjoyed playing, having snacks, learning and growing together. New families would come and meet other children with Down syndrome, their siblings and families as they were engaged, interacting and involved in everyday activities. Often you could see a weight lift off their shoulders as they looked around and realized their child would be just fine. In playgroup we also worked to instill the belief in parents that they are the experts and number one advocate of their children and worked to empower families to find their voice to share their story.
Today Open Arms is a successful group of the Northwest Down Syndrome Association, located in Portland and Vancouver. Under new leadership it is still gaining new membership, creating future leaders and continuing to open the hearts and minds of people who attend. New families are provided the invaluable NWDSA New Parent Guide, upcoming event flyers for learning and awareness opportunities, conversation with everyday families about daily life, meeting other dynamic children with Down syndrome and the many other benefits of the playgroup. Continuing families benefit from local and personal connections, monthly support, sharing life's experiences, remembering where they were through the faces of babies and looking forward to where they are headed in the business and brilliance of older kids.
In founding Open Arms I was also able to find the path to make the most of my daughter's life. My husband's and my determination to hold on to every hope and dream we had for Karley, my friendship with Sydney, getting answers to my questions at Open Arms Play Group, and receiving direction from the NWDSA to learn to be an informed parent were all key pieces in knowing that life with a child with Down syndrome would be just fine. Being involved in an active Down syndrome community has helped me and many other families find the way.
Jamie Burch
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