BENEFITING: DOWN SYNDROME ADVOCACY GROUP
Changing Lives Project
Changing Lives Project (TM) Copyright 2009
The Changing Lives Project was created to aid hospitals and hospital staff with the delivery of information to expecting and new parents. The literature that is provided is overwhelming and, in some instances, outdated and depressing. Here's an example from my own experience:
Corinne was only about two days old. The hospital provided me with a packet of information congratulating my husband and I as new parents and welcoming Corinne. I had not cried -- not even once in the previous two days -- until reading what was supposed to be positive information. The positive information read something like this, "...great strides have been made that have improved the health and longevity of people with DS. In fact, many adults with DS go on to lead productive lives and even work outside the home in jobs such as grocery bagging,...". It was at that point, in that moment, that tears fell.
This was all that the medical profession and society was expecting of my child's contribution? I wasn't crying because this, in fact, may be the upper limit of my child's capabilities, but because that was all that I was being told to expect from her and that was all that society was likely to expect from her. This was simply not acceptable.
The Changing Lives Project was developed to provide hospitals with literature drafted by those who have experienced and witnessed the great strengths of children and adults with Down syndrome. DSAG would like to work together with medical professionals in the development of this information in the hope that it will inspire parents, patients, and medical professionals, to name a few.
It is our sincere hope that slowly, over time, society's expectations will change regarding the capabilities of those with Down Syndrome, and in turn, more and better opportunities for them will follow.