Meet Colin Etchison & his Family

By Aaron Olson

Colin Award

Colin Etchison lives with his parents Don and Susan in Fishers, IN, and is a remarkable individual. Colin was born with Sotos syndrome, a rare genetic disorder, and despite many challenges, has had a number of accomplishments and achieved a sense of independence.

Colin Frisbee

Sotos syndrome is a rare genetic disorder characterized by excessive growth during the first years of life and is often accompanied by cognitive disorders such as autism, attention deficit hyperactivity disorder (ADHD), and obsessive-compulsive disorder (OCD). Early on, people with Sotos syndrome experience advanced bone growth and bone aging, and as a result, typically are much larger children and develop a larger than normal skull. The tallest teenager in the world has Sotos syndrome at 7’ 8,” though this type of growth is not typical. Sotos syndrome is also unique in its paradoxical existence as an autosomal dominant inherited trait, but 95% of cases are due to a “spontaneous” genetic mutation.

Colin Birthday

For Colin, Sotos syndrome had the usual physical hallmarks. His mother, Susan, remembers getting odd looks carrying him before he learned to walk because he was so big for his age. As Colin got older, it became apparent that he also had some form of autism spectrum disorder (ASD) as he had trouble processing information. Susan describes his mental state as being very “black and white” or “literal.” For example, Don once asked Colin to “check the door” meaning to check if the door was locked, but Colin interpreted it as him needing to check the door to see if it was closed. This poses a number of difficulties when so much of the English language is driven by inference and innuendo.

Colin Fishing

Susan and Don were always supportive of Colin and acted as his advocate when he needed help. That said, Susan credits his current independence to letting him try things on his own when he was younger. As Colin got older, he was enrolled in occupational therapy, and, in 2010, he participated in Project Search at St. Vincent Hospital. While there, he was able to obtain part-time employment as a cart attendant at Target and Kroger. Recently, after seeing his siblings and friends move on to full-time jobs, Colin took up full-time employment as an assembly line worker.

Colin

Colin’s favorite activity is basketball and has been his passion since he was 8. His favorite professional teams are the Pacers and Nuggets. He is an avid player and takes the sport seriously. When Colin was 13, he broke his femur and was bound to a wheelchair. Despite the challenges posed by this situation, he continued to practice, and he eventually went on to participate in the Special Olympics and was named Hamilton County’s athlete of the year in 2005.

If you would like to share your personal or family story, or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com

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