While in Boston, we spent a morning in the South End talking with Matthew, a psychologist with two siblings with special needs and a typical sister. One of his brothers, Scotty, was born with very severe medical and physical disabilities and tragically passed away when we was only two. His next brother, Steven, was born with Down’s Syndrome.
Because his hometown of Kansas City was pretty lacking in services, Matthew’s parents committed themselves to creating those services for families like their own. Over the course of Steven’s life, his parents created a Down’s Syndrome clinic in order to make it easier for families to see all their service providers in the same location, formed the Down’s Syndrome Guild of Kansas City, started a program with the Kansas City Chiefs called First Down for Down’s Syndrome, and established a residential and work program for adults with developmental disabilities — what a family! It’s possible though that as a result of all of this enormous time and effort spent on improving the lives of those with disabilities, Matthew was able to “fall through the cracks a bit” in his own family.
Not only did Steven’s disability lead the family down this path of public service but it also had an enormous effect on Matthew’s father’s personality. He described his father pre-Steven as super-macho, no emotions, workaholic who could even be a bit scary in his parenting. However, through interacting with Steven and realizing that his son didn’t have a “mean or spiteful bone in his body”. Matthew believes that his dad essentially looked at himself and said — how can you possibly be mad at this boy? and through that began to transform entirely. He told us that now he’s often amused at what his dad likes to do — being a doscent at a local art museum, going to wine tastings, traveling, etc. He credits all of this new flexibility to Steven and his unfailingly sweet attitude.
Because his family has become such celebrities in the world of disability services in Kansas, several former classmates have reached out to Matthew upon having children with special needs. They ask him how to best ensure that their “sib” child has a meaningful and close relationship with their sibling with a disability. Matthew told us that he tells them how important he thinks it was that shortly after Steven’s diagnosis, Matthew met an older boy with Down’s Syndrome that was extremely high functioning. This experience allowed Matthew to think about his brother in terms of all of the possibilities that could lie ahead versus his future limitations.
Beyond dolling out advice, Matthew also has spent his life dedicated to helping others. He notes that as a teenager, he spent his time volunteering and participating in community service initiatives. In college, he continued this by participating in both Best Buddies and Big Brother Big Sisters. In his career, he chooses to mostly see patients from low-income backgrounds as he continues to dedicate himself to “rooting for the underdog”. As someone who has also immersed themselves in service since high school, I resonated so much with this portion of the interview and was happy to meet another sib who shared my interests.