October has significance beyond Halloween for those of us touched by Down syndrome. It is also National Down Syndrome Awareness Month. Every October, the spotlight seems to shine brighter on people with Down syndrome. A greater number of groups host awareness walks and fundraising events, and more parents share facts, pictures and stories on websites, blogs and in social media. There is Down syndrome buzz in the air.
For us, October is a time of reflection. For the past 11 years, this is the month we gather our thoughts and share our journey with Nick through our annual Visions letter. These letters document the stages of not only Nick’s development and growth, but ours as well.
The program letters from early years reflect a quest for knowledge. Focusing inward, we struggled to learn more about Down syndrome and its implications for our son and family. We urged others to welcome, value and accept Nick and to see him as more than a label. We worried about how to achieve inclusion at school, in our community and in life itself. At the same time, we fell madly in love with a precocious, determined and fun-loving little boy who gave us a deeper perspective on life.
As Nick grew, we grew too. Later letters reflect our growing social awareness and concern. Focusing outward, we fretted over outdated stereotypes held by many in our community. We watched as technological advances in early “detection” created an urgent need for mothers to receive accurate information about Down syndrome. We preached the hidden harm embedded in use of the r-word. We became advocates for Nick.
Throughout Nick’s life, we have witnessed the commonality of our journey. Parents have blazed trails before us and widen them in our wake, experiencing similar joys and challenges. There is an entire Down syndrome community with whom to share the road. And there is power in that knowledge.
Nick will turn fourteen next month. He’s not our little boy anymore, and we are no longer newbies to the disability world. We now have a new job and a new focus: to prepare Nick for adulthood. We are just starting this leg of our journey, but we expect to learn from the many guides who have already traveled this way and learned the ropes. Bring it on.
Whether this is your first year or your twelfth year participating in the Visions gala, we thank you. This event forms the cornerstone of support for everything DSF accomplishes. We could not do it without you.
- William and Dana Halle