I am very excited, but also a bit nervous, to become a Parent Liaison with the Down Syndrome Association of Atlanta. I am attending the Parent Liaison training this coming Saturday and I've volunteered to be the contact at a local hospital for families that give birth to children with Down syndrome.
When Gwyneth was born four and a half years ago we did not have a visit from a parent of a child with Down syndrome. I think it would have made a monumental difference in our first months with her. We were lucky enough, however, that there was a lactation consultant who worked with us who has a daughter with a developmental disability and hypotonia like Gwyneth has (which made breastfeeding hard). This woman made a big difference for us in those early confusing days. We were bombarded with visits from all types of medical professionals, some of whom (I know now) did not say the most appropriate things. It tough for anyone to know exactly what to say in a sensitive situation like that. So it was very helpful to meet a woman who could give us empathy, instead of hesitant sympathy, because she had been in our shoes.
The biggest turning point for us in our early journey as Gwyn's parents was when she was 6 weeks old. We went to a Down syndrome support group for families that had kids ages 0-5. Neither of us had ever known young children with Down syndrome before. Only teenagers or adults. So to see a few 2- and 3-year-old kids with Ds running around and playing with each other and the siblings was eye-opening. And talking to the parents and hearing their stories made me realize we weren't alone.
I hope I can make a difference for the new or expectant parents in my area soon and give a little back to this wonderful community of Ds families.
This video came out at the beginning of the year, and I loved it's message to new parents. It is also full of well-explained facts and figures.
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