This blog is for families with children who have Down Syndrome.
Our son Alex has Down Syndrome. While we learned that our son likely had a genetic irregularity very early in our pregnancy, it still felt like the world was moving a million miles a minute when Alex was born. We were overwhelmed with our new life, our new medical and health challenges, our new services, our new normal. Now just as we are somewhat getting a handle on a few of these things, we are suddenly forced into a new educational environment and all that having a child with special needs in school entails. These decisions are important, and there are a lot of things to examine and study. Later we will have to consider how to enable and empower our son toward independence. It is a remarkable and lifelong journey.
We have thought a long time about whether or not to make this website. On one hand it is somewhat of a violation of the privacy and sanctity of our son’s life. And our son is – by far – the most important person and part of our lives. We went into this project knowing full well that we would be sacrificing our son’s anonymity. We are not totally comfortable doing this, so our decision has been agonizing.
However, we felt that the issue of Down Syndrome, the current advances in prenatal testing, parental concern over having a child with special needs, and distress over a child’s development warranted the telling of our continuous journey. We believe that there may be assistance or resources that we can offer other parents and potential parents to make our journey with Down Syndrome together just a bit easier and more manageable. So we have decided to share part of our lives in a semi-transparent way.
We are not sure that we have reached a safe, healthy, and risk-free compromise, but we hope this will be helpful.
Bob May and Olma Olay-May