The Magic of the Man with the Sunglasses

Carson carries a clinical diagnosis of Angelman Syndrome, a lifelong neuro-genetic disorder. Like many with Angelman Syndrome, Carson cannot speak, read, or live independently, and his behaviors can appear unusual to those unfamiliar with developmental disorders.

Debi was inspired to write a book because of people's reactions to Carson in the community. "On more than a handful of occasions people in public have spoken harshly to Carson for looking, staring, or pointing at them. I forget that everyone doesn't have an innate comfort with people who are different."

Reflecting on these experiences, Debi realized that a children's book would be an opportunity to reinforce respect and acceptance before prejudices set in. She thought about Carson's signature look—multiple pairs of sunglasses worn at once—and how it was a perfect entry point for talking about differences.

Debi recognized that Carson's fun style would resonate particularly well with children. Carson has more than fifty pairs of sunglasses he has collected over the past decade, and his favorite pairs switch from day to day. It's not unusual to see him sporting multiple pairs at once, a look that is captured beautifully in both the book's beautiful illustrations and in a collage of photos on its back cover.

The Magic of the Man with the Sunglasses has been warmly received by audiences of all ages. Debi believes that telling our stories, with both the ups and the downs, has the power to help others feel heard, supported, and less alone. When asked what she'd share with a family considering next steps for their young adult child with a disability, Debi's first suggestion reflects that same belief in the power of sharing stories: "Find other parents who have gone through it and ask questions."

She goes on to acknowledge that it can be difficult to find exactly the right option for your family. "Think outside of the box and be creative," she encourages. "Mostly, listen to your gut and be assertive."

As her own family explored options, Debi dealt with questions about why she no longer thought Carson should live at home with her. She says the answer was simple—she knew Carson would thrive in a new setting. She and Carson's stepfather both worked full-time, and Carson's sisters were in college. Life at home had become too mundane. She wanted to find an environment where Carson would be challenged and grow. Because he was not eligible for residential services through the Department of Developmental Services, Debi began to explore alternatives. After much exploration, Adult Family Care (AFC) turned out to be the best fit for Carson.

While most Advocates' AFC participants live at home with family caregivers, Carson's situation is a bit different. He lives with a multigenerational family in the community, where he has gained four "bonus" sisters. He has chores and responsibilities and a schedule packed with his caregivers' family activities. Moreover, he continues to grow his social skills by navigating relationships with bonus siblings.

Debi acknowledges that this arrangement has benefits for everyone. For Debi, it has opened up possibilities previously unavailable to her: she can go to the gym, pursue hobbies, and continue working. Her life now allows for spontaneity in a way that many parents of adult children take for granted.

Reflecting on her family's experience with Advocates' AFC program, Debi is deeply appreciative. "I am so amazingly lucky, as is Carson, to have the setup we have currently." Having identified such a good fit, however, Debi is not content to rest. "Now knowing what is possible, I have even more dreams for Carson's future." 

If you are caring for a loved one with a developmental disability and would like to learn more about the supports available from Advocates, please check out the Developmental Services page of our website.