During college I worked in Developmental Therapy as a Therapy Technician.  After graduating my boss moved away and I was promoted to her position of Developmental Specialist. (It still makes me laugh that they gave a 20-something childless college graduate the title of Developmental Specialist.  As a mother of four now I can see that I was fairly clueless, in the practical sense, of childhood development).  Many of the kids on my caseload I saw in various settings; at home, at school, out in the community.  Overall, their behaviors were pretty consistent.  One little girl, however, was a very different girl in therapy and at school than she was at home.  I knew I was no expert on parenthood, but could see a lot of the behavior problems she had at home had more to do with parenting style than her disability.  Her mother wanted things to be easier at home, but insisted that the behaviors were due the disability.  The daughter was defined by her disability in eyes of her mother.

We attended Outdoor School last week as a family and it was the first time we were around a large group of people who didn't know that our son has Down Syndrome.  While he does have some of the facial features common in people with DS, it's not always all that obvious and often times people are surprised when they hear his diagnosis.  However, the way he interacts with his world is like a child about 9-12 months younger than his chronological age.  So, at Outdoor School, I struggled for the first time about how to introduce my son.  When asked about his age do I tell them he's 2 and leave it at that.  Do I say he's 2 and has DS?  It probably depends on the situation, but I'm wondering how to decide when it's necessary to reveal his diagnosis.  Where is the line between defining my son by Down syndrome and facilitating how he and others interact together?  I think, so often, people with DS are defined in the eyes of others by their diagnosis.  They are not "Sally who has DS."  They are the "Down Syndrome child" and in a way loose their identity to their diagnosis.  DS certainly affects who my son is, but he is so much more than DS.  I guess I'm not sure how to express that in a simple introduction.