Kunal blindly flails at his alarm clock as the sound of its loud and unwelcome buzz jars him awake at 6:30 A.M. After hitting the snooze button a few times, he finally rolls out of bed in his two-bedroom apartment in Auburndale, Massachusetts. He showers, brushes his teeth, gets dressed and heads for work. At six in the evening he returns home and watches CNN while enjoying dinner; a meatball sub courtesy of Tom’s Pizza – his favorite local fast food joint. He gets to bed by midnight so that he can repeat his routine again the next day. Although Kunal seems like a typical man in his mid-20s, that is hardly the case. What makes my brother Kunal different is his genetic disorder called Trisomy 21, commonly known as Down syndrome.
Despite his disability Kunal insists he leads a normal life. “I live in my own apartment, and I work two jobs – the Price Center and Ablevision,” he said. Located less than a mile from his apartment, the Price Center is an organization that assists young adults with special needs in finding employment. Through a program called “Worksmart,” people like Kunal are placed in local businesses based on their skills and interests. His other job is at Ablevision, an organization in Malden, Massachusetts. A subset of a company called Triangle, Ablevision is a media production facility that gives disabled adults an opportunity to produce and film original multimedia content. “We get to interview celebrities and sports icons like [Boston Red Sox second baseman] Dustin Pedroia, and [New England Patriots quarterback] Tom Brady,” said Kunal. The productions are archived on Ablevision’s YouTube channel as well as the organization’s website. For Kunal, who has always had an affinity for performing and being in the limelight, participating in Ablevision is a dream come true.
He is also a member of several other organizations such as the Special Olympics and the Best Buddies program. Kunal explains the experiences he has with other intellectually disabled individuals helps him cope with his condition. “Seeing other people with special needs makes me feel like I’m not alone,” he said. “I feel welcome and accepted at [the Special Olympics] and [Best Buddies] events.”
Situated just 15 minutes away from our parents’ house in Wellesley, Massachusetts, Kunal sees our family frequently. “Every Wednesday dad takes me out to Subway,” he said. “Then on Friday I go home for the weekend, and then come back to my apartment on Sunday night.” Our mother, Sandhya, works with toddlers with intellectual disabilities. She explained her decision to pursue a career in this field was prompted by the news she received in the delivery room 27 years ago. “When the doctor told us that our first born had Down syndrome, we were in shock and disbelief,” she said. “It was difficult to comprehend all the implications and the ramifications that were involved in raising a child with special needs especially when we were totally unprepared for the news.”
My mother reported the first few years of parenting were trial by fire, but through extensively educating themselves, my parents learned how to deal with their situation. In 1994, my mother went back to school, earning a master’s degree in early childhood education from the University of Illinois, Urbana-Champaign – a decision she claims changed her life. “I went into the field because I had a son with special needs, but I always had a fondness for children with special needs,” she said. Now as an early interventionist, she helps parents who are in the same position she once was.
A member of a big extended family, Kunal has made an indelible impression on his grandparents, aunts, uncles and cousins. He shares a special bond with our thirteen-year-old cousin, Anisha, who he sees when home on weekends. “It's definitely a unique experience having an older cousin with Down syndrome,” said Anisha. “Early in my life, [Kunal’s disability] did not really affect me, but as I grew up I became increasingly aware of his limitations.” She admitted she worries about the psychological impact her growing up will have on Kunal, and his eventual realization that her intellectual development will continually and significantly eclipse his. “When I was little, [Kunal] babysat me and I wanted to play ‘school’. Of course, I wanted to be the teacher, and him the student,” described Anisha. “I’d write out a sentence and ask him to copy it. As I watched him struggle, I saw for the first time the differences between him and me.”
Now a teenager, Anisha offered insight into the bittersweet reality of growing up. “I worry about the day I start driving or go to college,” she said. “I've always been his baby cousin. It’s hard to think that he has to watch his younger [family members] grow into adults and move on with their lives while he’s still tethered back.” As she gets older, Anisha learns more about her dynamic with her cousin. “My relationship with Kunal is not easily described as it is multifaceted,” she explained. “He will, of course, always be like an older brother to me. I look up to him and am happy when he succeeds, and distraught when something is taken away from him because of his genetic disorder.”
According to my mother, having a son with special needs is both a blessing and a curse. “He is a very sensitive and caring person but it is difficult to see him deal with his limitations and shortcomings on a day-to-day basis,” she said. Although he has expressed his frustrations and even battled a brief period of depression, Kunal has learned to accept his condition. “I know I have Down syndrome and nothing can change that,” he said. He is thankful for his family, who according to him, has been the most supportive and nonjudgmental group of people in his life. He draws on them for encouragement knowing they are the ultimate source of unconditional love.