It doesn’t take a special parent to turn a Down Syndrome diagnosis from a challenge into a blessing. It takes a positive and loving attitude that affects other family members, friends and the public.
“Individuals with Down Syndrome benefit from loving homes, appropriate medical care, inclusive education and positive public attitudes,” says Robin Sirkin, executive director of Up Side of Downs in Cleveland.
Matt Scheidt, 38, of Shaker Heights and his family is one example. “My parents’ philosophy was that they would raise him like they would any other child, so for me, Matt was just my older brother rather than my brother with Down Syndrome,” says Kristin Dailey of Shaker Heights.
Kristen shares some unanticipated lessons that only a child with Down Syndrome can bring to a family.
“Matt’s influence has been nothing but positive and led me to a career in special education and to be an advocate in the field. It opened me up to being an accepting, nonjudgmental person and to realize the capabilities and potential that anyone has regardless of their level of ability,” she says.
Some children choose Matt’s path and go on to be allies of their own. “Matt has been part of a disability awareness program with me for more than 20 years. He is a big self-advocate,” Kristen says.
Up Side of Downs, which is in the final 50 out of 5,000 applications nationally for a grant and a feature in People Magazine, provides support, education and advocacy to families of children with Down Syndrome.
“Once families realize they are not alone, it gets them over the initial fear and anxiety. The most important thing that is comforting for families to know is that their baby is just like any other baby that needs to be loved, held and will have a journey just like any other child,” Sirkin says. “You do not know what will be on the path.”
Like any parent, parents of a child with Down Syndrome find themselves adapting as their child makes transitions with others his age.
“A parent came in really upset the other day,” Sirkin says. “When I asked what was wrong, she said that she just got her phone bill and her daughter did 5,000 text messages last month. That is a normal, young-adult experience that can happen in any household.”
With the help of resources like Deepwood Center in Lake County, every child can be successful.
“We assess what their needs are and build on those goals,” says Beth Falkner-Brown, director of volunteer services at Deepwood. “They sing at Christmas concerts, attend book club meetings at Barnes & Noble and even participate in Special Olympics. They are working out in the community at restaurants, stores, hair salons and spas.”
Deepwood Center, affiliated with Lake County Board of Mental Retardation and Developmental Disabilities, is part of the Help Me Grow Program in Lake County and provides services for infants through age 3.
“For ages 3-5, we have an integrated preschool program with typical and atypical children. Then for ages 6-22, we have a regular school program at Broadmoor School,” Falkner-Brown says.
In Geauga County, Metzenbaum School is an option for children in preschool through age 21. Metzenbaum is a chartered school run by the Geauga County Board of Developmental Disabilities. The curriculum is individually based, but has to follow the standards of the state of Ohio for school-age and preschool, says Dr. Alan Koterba, principal.
Parental involvement at school is encouraged. “The more the family can be involved, the better the chances of having a successful program,” Koterba says.
Because no two children with Down Syndrome are alike, there is a wide variation in the abilities, physical development, behavior and personalities, Sirkin says. The one similarity is that they make strides over time.
“Children with Down Syndrome have had tremendous improvement in the past 20 years as early identification occurs and as programs start earlier,” Koterba says.
Finding out what your child enjoys and making sure he becomes involved in that can have a positive impact. Hattie Larlham in Akron offers medical programs as well as job opportunities at cafes in Hudson, Akron and Cleveland. Doggy daycare is one of the most desirable places for employment.
“It is an overnight boarding facility for dogs when people go on vacation and people with disabilities are hired and responsible for caring for all the dogs. They feed, bathe and give love and affection to the dogs,” says Bill Wahl, communications coordinator at Hattie Larlham.
For some children, the work experience becomes an inspiration.
“One of the employees started taking classes at the University of Akron to become a veterinary assistant. It was a six-month course and she passed, so now she is free to work at the vet of her choosing and help out of in the office. Our doggy daycare was the launching pad for that,” Wahl says.
