Awareness in Action

October 26, 2016

As the mom of a first grader with Down syndrome, I always wonder about the origin of "awareness" months. While many people are aware of Down syndrome, few really know what it means for an individual for the day to day life of the individual who lives with it. We were told very early on that the number one indicator for employment for individuals with disabilities is not which courses a student takes or how they score on tests; it is parent and teacher expectations. For us, that has meant that we always have the opportunity to educate those who come into our son's life, and that means teachers and school personnel as well.

We have been lucky to have wonderful support from day one: from Early Intervention therapists to pre-school and elementary school teachers, each adult has been willing to learn and to not just check the boxes but to be actively engaged in the process of making high expectations a reality. My husband and I committed early on to becoming partners with therapists and school personnel in order to see those expectations through.

Many parents despair at the complexity of IDEA because they think that they need to become legal experts. They don't. There are many resources out there to help families better understand what the law means to them and how to apply practical steps to advocate for their children with Down syndrome in school. Wrightslaw was developed expressly for this purpose and it is available online and in cities all over the country.

But perhaps the best resource that parents of children with Down syndrome can access is the lived experience and expertise of individuals with Down syndrome and their families. Our local Down syndrome network has been invaluable when navigating the schools on behalf of our son. As a result, we knew what to ask for and how best to achieve what we sought out to do.

Our son Julian is now in first grade, so our journey has just begun. He is in a typical classroom with a 1:1 aide and he is pulled-out for small group instruction in reading and math. We have had great experiences with teachers by putting our heads together and getting creative when dealing with the challenges that arise in school, and there are many. But committing to taking an active role in our son's education has been the best way for us to turn Down syndrome awareness into action.