When Sujeet was 9, his mother arranged for him to take private violin lessons to help his memory and hand/eye coordination. "Amazingly, he did very well," she recalled. Then when Sujeet's older brother began taking piano lessons, Sujeet listened and was soon playing the same tunes. Over the years, Sujeet also learned to play the clarinet, saxophone and percussion. On Sunday, April 10, at 3 p.m. Sujeet Desai, who has performed all over the world, will present "Sunday with Sujeet: An Afternoon of Classical and Popular Music" at the WAMC Performing Arts Center, 339 Central Ave., Albany. Tickets at $5 each or $20 per family, may be obtained by contacting Down Syndrome Aim High, c/o Carol Rowell, 1282 Dean St., Niskayuna, 12309.
Sujeet also has a black belt in Tae Kwon Do and has won awards in alpine skiing, swimming, cross-country running and bowling. He graduated from Fayetteville-Manlium High School in Syracuse with honors, and the Berkshire Hills Music Academy in South Hadley, Massachusetts, in 2003.
Today he lives in a supported-living apartment in Rome
where he works for the Office of Mental Retardation and Developmental Disabilities, playing music and giving motivational speeches. He also travels giving concerts and speaking for self-advocacy and disability awareness.
"Someday I would like to have my own car and drive around like my brother," said Sujeet. "I hope to continue playing music in solo performances and with a band. I have started doing workshops with my mom where she talks about my life and how music has helped me and could help others." Still, Sujeet's mother says opportunities do not come easily for people with disabilities. "We have to constantly advocate for Sujeet in order to have his strengths recognized and not have people dwell on his disability," she said.
That sentiment was echoed by parents and professionals who are members of the local chapter of Down Syndrome Aim High, a non-profit group that provides support and up to-date information to parents of children with Down syndrome and the community. "I think it's fair to say that each and every child with Down syndrome has capabilities and talents," said Dr. Harm Velvis, a pediatric cardiologist in Albany and member of the board of directors of Aim High whose 14-year-old daughter, Mariah, has Down syndrome. "As families, we have to work hard to get everyone involved in helping our children develop those abilities."
Carol and Chandler Rowell of Niskayuna, have been members of Aim High since they moved to Niskayuna 11 years ago. They are the parents of Maggie, 13, a sixth-grader at Van Antwerp Middle School, who has Down syndrome, and Genny, 11, a fifth-grader at Hillside Elementary School. "Aim High has been a tremendous help to our family," said Carol Rowell. "We've gotten a lot of support from other families who are going through the same thing, and it's provided our daughter, Genny, with connections to other kids who have siblings with Down syndrome." Rowell described Maggie as a good reader who knows every children's song that has ever been written. "My dream is to see her work as a teacher's assistant in a nursery school some day," said Rowell.
Stacy Hengsterman, another member of Aim High, said she knew nothing about Down syndrome when her son Alex, was born one year ago. "At first, there was shock and grief," said Hengsterman, who lives in Clifton Park with her husband, Rick, and another son, Jackson, 3. "Then we learned that Alex was born with several heart defects and he needed surgery almost immediately." Alex has had two open heart surgeries, and today he is healthy. Hengsterman said and her husband hope that Alex will be able to attend school and have friends. "I hope that people who see Alex won't immediately think of his disability," she said. "We have two perfect children. It's just different than we expected."
Another organization that helps parents with children with Down syndrome is The Down Syndrome Resource Center. Located at 7 Southwoods Boulevard in Albany, the non-profit organization coordinates medical care for individuals with Down syndrome, assures appropriate education and promotes inclusion in the community. "We basically help parents through medical, social and communication issues, with a goal of making sure the child can have the most independent life possible in the community," said Diane Lang of Delmar, full-time medical coordinator. Lang also coordinates physician visits and offers to accompany parents to doctor visits. "It's particularly helpful if there is a complicated medical issue," said Lang whose 19-year-old daughter, Jennifer, has Down syndrome. "It's nice to have another set of ears."
So far the two-year-old Down Syndrome Resource Center has provided services for 421 families and 253 professionals. Down syndrome is a chromosomal condition that affects approximately 250,000 individuals in the United States and 500 individuals in the Capital Region. Improvements in medical technology has increased the life expectancy for individuals with Down syndrome - from an average of between 12 to 18 years to between 55 and 60 years, according to Velvis. Approximately 50 percent of children with Down syndrome are born with serious congenital heart disease and 50 years ago, Velvis said doctors did not know how to help them. "Today we can fix nearly any heart condition the children are born with," he explained. Children with Down syndrome are also more prone to infections, and today's antibiotics are more powerful. "Fifty years ago children with Down syndrome were put in institutions - crowded places with a lot of infections," Velvis explained. "Today they are home with their families which is a much better environment." Velvis said he and other parents of children with Down syndrome feel strongly that their children should be fully included in schools and have an opportunity to live and work in the community as independent adults. "We know that inclusion in schools is not easy," said Velvis. "It's a process of adapting the curriculum and understanding a different way of learning."
Velvis said his daughter, Mariah is a Girl Scout who enjoys downhill skiing and karate. She is in the seventh grade at Bethlehem Middle School. "She's learning about everything the other children are learning in a simpler way that she can handle," he said. Dasai encouraged parents whose children have Down syndrome to seek out organizations that will help them find appropriate services. "There is no end how far you can keep advocating to have your child's dream come true," she said. "Sujeet's performances are very inspirational. The audience literally cries - especially the parents. We do this to give hope to other parents."