On the Brightside…

It’s no secret in the developmental disorder world that individuals with Down syndrome are often among the kindest, most precious individuals to walk the planet. In an online article published by the National Association for Down Syndrome, one academic researcher wrote that, if people with Down syndrome ruled the world, “affection, hugging and caring for others would make a big comeback.”

Working at Kennedy Krieger—both as director of Social Work and of the Brightside Program for individuals with Down syndrome—I am so incredibly fortunate to share in the lives of so many of these incredibly caring and unique individuals. Sure, everyone has their bad days, and those with Down syndrome are no different. But, in the grand scheme, their exuberance and caring demeanors make me feel so lucky to know them.  And Alexandra Carter is no different. 

From the moment I met her, it was clear that Alexandra would not only thrive in the Brightside program, but that the program would benefit from her presence. Brightside first started in hopes of helping teenagers with Down syndrome to build the kinds of meaningful friendships that they often lack in day-to-day life. In addition to sponsoring activities and outings, the program tries to connect younger members with older individuals with Down syndrome, who’ve gone on to create happy and fulfilling lives for themselves and who can serve as an example of life’s possibilities—it can be an important lesson for these teenagers, who might struggle see a bigger picture or find hope.

Even for those who do well in their schools and among their typically developing peers, opportunities to make friends and socialize are often scarce.  But friendships and socialization both play important roles in helping teens with Down syndrome to function in the world and build meaningful, happier lives. Without these opportunities, these teenagers—who may have gotten by happily as a child—often struggle to develop the kinds of age-appropriate behaviors that would help them function better at home, at school, and in their communities

Alexandra, however, has quite a leg up in the socializing department.

One of the most remarkable things about Alexandra is how beautifully she interacts with others. In addition to Down syndrome, Alexandra also has alopecia—a condition that causes individuals to lose their hair. But, while this might make someone else embarrassed of uncomfortable, self-consciousness and insecurity are not in this 15-year-old girl’s repertoire. Whatever differences exist between her and others are mitigated by her confidence and bravery and enthusiasm. Within an hour of meeting me, Alexandra had broken into song (she loves to sing). She gave a repeat performance when she joined us on her first outing to a bowling alley, during which she enthusiastically cheered on her fellow bowlers and made friends as if she’d been with the program from the beginning. She’s the kind of girl I know will make the most of the program—and who could easily go on to be a mentor for other young members.

I have to be honest—directing the Brightside program can be a challenge. It takes time to organize outings and opportunities for participants, funding is always tight, and we’re always looking for volunteers and supporters. But watching Alexandra—and so many of the other individuals who join Brightside—reminds me why the program is so important. This is the chance that so many of these individuals need to build the skills that can make a vital difference in their lives. I think about these individuals and the beauty they bring to it, and think about what a waste it would be, should they never develop those skills and never have the chance to introduce the world to their warmth and kindness. So, while I truly believe that their lives are made better for having the Brightside program, what’s even more important is that I and the rest of the world are all better off for having them.

Mary Snyder-Vogel is director of the Social Work Department at Kennedy Krieger Institute. She is also program director for the Brightside Down Syndrome Mentoring Program.

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