October begins Down syndrome awareness month. Many Down syndrome organizations and groups will carry out “Buddy Walks,” as many of them are called, encouraging friends, family, and other members of the community to come alongside individuals with Down syndrome for a walk to raise awareness. When I served on the North Carolina Down Syndrome Alliance executive board, the Buddy Walk was a gargantuan event and well more than $100,000 in order to support to families and education efforts within many organizations and agencies. Those were wonderful and encouraging events that fostered connection and community.
Tomorrow morning, here in Hawaii on Hickam Air Force Base, a small band of 4-5 families will join together for our own Buddy Walk. We will raise no money. We will have no sponsors. There will be no fanfare. No media coverage. As I understand, aside from those of us with children with Down syndrome, there will be no other individuals outside of immediate family members participating. The only outside involvement I’m aware of will be a friend of one of the families who wants to provide a small lunch at the conclusion of our walk. In my mind, I imagine that we will simply look like a gaggle of families on a hike. And maybe that’s all we will be, but that’s okay. I look forward to the connection with other families, only one of which I have actually met.
As I’ve thought about the idea that we utilize different months throughout the year to emphasize awareness, I can’t help but wonder what exactly do we mean when we raise awareness? Especially as it relates to Down syndrome. I found a great definition of awareness that is worth sharing and perpetuating as part of this effort. Awareness=Concern about and well-informed interest in a particular situation or development. Great definition, concern and well-informed interest are commendable components. But I would add one thing, namely, action. If awareness does not drive us to action, what good is it to be aware?
With that, a few points of actionable awareness for you to consider as we begin this month.
-Down syndrome is a genetic condition and occurs when there is an extra copy of the 21st chromosome. Thus, the commonly used mantra 3-2-1, or the Lucky Few, usually indicates association with a person or family member that has a Down syndrome diagnosis.
-Down syndrome encompasses a variety and broad range of developmental delays as well as physical disabilities. There are distinct physical features that typically accompany Down syndrome, such as a flattened skull, almond shaped eyes, larger than average tongue, and often short stature. Intellectual and social abilities are typically effected to varying degrees as well.
-Families with a child or individual diagnosed with Down syndrome face a variety of unique challenges as it relates to the developmental delays, educational challenges, and social dynamics associated with Down syndrome.
-Children and individuals with Down syndrome are people with emotions and the ability to express and sense the emotions of others. While their ability to verbally communicate is sometimes challenged, their ability to sense and relate to emotions is a definitive strength.
-Never be afraid to talk directly to a child or individual with Down syndrome. Regardless of the degree of their development delay, they are capable of interacting with you and will likely respond to you warmly and with energy. I’m always endeared when individuals bypass me and talk directly with Kaydan, even as if I don’t exist. Kaydan, and others like him, can manage to communicate on their level and enjoy when they are treated like anyone else.
-Lastly, always be willing to ask questions. Questions create opportunities for connection and deeper understanding. Whether about the individual themselves or about the impact of their diagnosis on the family, questions give opportunity for the story to emerge. This can be incredibly helpful and meaningful for parents to talk about their child or the unique challenges that they face.
As we begin this month of awareness, I hope and pray that you will put your concern and well-informed interest into action by engaging at least one person with Down syndrome, as well as their family! You will be surprised by what you learn, and you will definitely be encouraging to a family by understanding the challenges and victories of this journey in the world of Down syndrome.