Did I really know Down Syndrome?

In medical school, we were told about Down Syndrome (DS) as a disorder. Babies born with it have a high chance of having congenital heart disease, tracheal oesophageal fistula, Hirshsprung disease, etc. They will live up to 60 years old now but they will have learning difficulties. Growing up, I have never known anyone with DS personally. So what will I do if I have a child with DS? Before we had Sean, I felt that no matter what disability my child has, I have to love him and bring him up to fulfill his potential. As for DS, my idea of potential was being able to walk and talk, being able to work somewhat in a sheltered workshop because that was what I knew about people with DS then. After having Sean, my expectation has gradually changed. Now I want to help him to learn, to be included in the society, have a job and live independently in the future.

It is difficult if we have never met or known someone with DS to picture this. The education that we received in medical school and the clinical experience that we have through working in the hospital or surgery give us only a glimpse of what DS is or more appropriately who people with DS are. We tend to think of it as a collection of medical problems. We see it as undesirable, abnormal. This is why I was so upset when I knew of the diagnosis because I felt sorry for Sean. I thought that he had this horrible syndrome that he will never be able to live normally.

The reality is that people with DS are individuals capable of learning, interacting, socialising, working, just like other people. They may learn a bit slower but they will learn. To me, Sean is a funny and cheeky boy. He is inquisitive, creative and eager to help. Our days are pretty normal, filled with the mundane routines. They go to school and we work. They play with each other and fight with each other. You hear Hannah getting upset about Sean making a mess of her things and Sean complain about Hannah. If you ask me now what I think about having a child with DS. I will say it is not only ok but more than that. It is awesome. Our days so far have been filled with joy.

We meet families who are equally happy about their children with DS. In fact, most of the despairs come not from the child but from the society, from the society's attitudes towards disability. If that can be changed, it will be even better. It is changing and it is nice to know so many families are eager to adopt children with DS. It is nice to know more and more women choose to keep their babies when they found out the diagnosis during prenatal screening.