Family steps up for kids with Down syndrome
Pandemic doesn’t stop annual walk from marching forward
For Michelle Katz and her family, the annual Step Up for Down Syndrome Walk is a big deal. But like most things in 2020, this year’s walk was threatened by the coronavirus.
Katz refused to let that stop her
When the walk went virtual, she and her family brought a version of it to Stamford.
For Andy, Katz’s son with Down Syndrome, it is one day when he knows that he fits in.
“I can’t even describe to you the feeling I get that day,” said Katz. “I love that day more than I love my son’s birthday.”
In a normal year, the Step Up for Down Syndrome Walk, held at New Britain Stadium, celebrates people with cognitive disabilities and their families.
Fire trucks, face painters and bouncy houses lined the stadium in years past. Children led packs of family and friends around the stadium to raise money for Down Syndrome Association of Connecticut initiatives.
The association funds services for both its members and the larger community, including the Literacy Education Center — one of a handful in the United States. The center provides educational support for children with Down Syndrome, teaching them how to read with methods specific to kids with cognitive disabilities.
Anywhere from 10 to 15 people join the Katz family at the walk in New Britain under normal circumstances. This year, the pandemic has caused the event to be held virtually, with families walking in their own neighborhoods all over the region.
Some 55 people joined Katz’s team, Andy’s Angels, at Belltown Park in Stamford.
Both Katz and Shanon Mc
Cormick, the executive director of the Down Syndrome Association of Connecticut, have watched the Step Up for Down Syndrome Walk grown exponentially in the last several years.
McCormick has been involved with the Down Syndrome Association of Connecticut since she moved to the state 15 years ago with her son, Sean Martin, who has Down Syndrome.
“My son was one of those kids who's the only one in the school district with Down Syndrome,” said McCormick.
The association works to ensure that those kids have adequate emotional and professional support, especially in school.
October is Down Syndrome Awareness month, and Down Syndrome Association members often go to local schools to make intellectual disabilities visible to the community.
Michelle Katz finds interacting with students essential to normalizing cognitive disability in the greater Stamford community. Alongside her middle daughter, 5-year-old Emma, Katz reads books about Down Syndrome at Stark Elementary School in Stamford.
Like McCormick’s son, Andy Katz was the only child with Down Syndrome at Stark. The children around him, like his younger sisters’ friends, had questions.
Questions about intellectual disabilities are common, particularly among younger children. Children may wonder why a person with Down Syndrome uses sign language or why their speech is delayed in general.
Families answering those questions in early and in intimate environments is instrumental to ensuring that children with intellectual disabilities feel accepted in their communities, McCormick said.
“People don't know whether they should ask or not ask.
“I can’t even describe to you the feeling I get that day. I love that day more than I love my son’s birthday.” Michelle Katz, on the Step Up for Down Syndrome Walk event
They don't know what to do. And that's where the separation starts,” she said. “When people don't know what to do, they do nothing.”
Decades of research show that individuals with intellectual disabilities benefit from being deeply embedded within their communities. Research published by the Journal of Intellectual Disability Research shows that when people with intellectual disabilities are involved with others, they exhibit greater community, civic and social participation later in life.
Michelle Katz thinks that being vocal about Down Syndrome in Stamford has helped strip away some of the misconceptions that people still have about cognitive disabilities.
“I will not let anyone think that Down Syndrome is what your grandmother told you it is,” says Katz.
People are quick to tell Katz how sorry they feel about Andy’s Down Syndrome. It started happening the day he was born.
After Katz delivered her son, a nurse entered the room with a solemn expression plastered on her face.
“We have reason to believe that your son has Trisomy 21 and I want to tell you how sorry I am for you,” the nurse said.
Katz’s heart ached when she first learned of her son’s diagnosis. She mourned the version of her future that she fantasized about before having children.
Now, Katz rejects the idea that her son’s diagnosis is anything to be sorry about.
Katz celebrates her son’s neurodivergence. She says that he can do everything other little boys do, just at a different pace.
She hopes that after bringing 55 people to Stamford to come together and walk, the rest of the city will celebrate children like her son, too.
“This is not the life I had planned for myself,” said Michelle Katz. “But this is a damn good one.”