Center with little government support is a haven for 320 families.
A whirlpool of blond and pink, a toddler girl is running around, too fidgety to play with toys. Basking in people’s attention, she goes around to everyone in the room, opening her arms to welcome a hug.
Thirty-month old Milana Harryvan has Down syndrome, a genetic condition in which a person has 47 chromosomes instead of the usual 46.
The extra chromosome can cause problems with the way the body and brain develop, with symptoms that vary and range from mild to severe. Children with Down syndrome have a widely recognized appearance.
The Early Learning Centre, where Milana is having fun, is a unique place in the city that welcomes children with special needs.
There are 320 families that have been coming here since the non-profit center opened a year ago.
Both the children and their parents learn something here. The parents, in particular, learn how to teach their special kids letters, numbers and even how to communicate with them better.
There is very little literature and assistance available to children with Down syndrome and their parents. A regular kindergarten will most likely turn them down.
Typically they eventually end up in boarding schools for disabled kids, most of which are just places for exhausted parents to drop the child off for most of the week.
Often babies with Down syndrome end up in orphanages, like Milana had. She was lucky to be adopted a year ago by Johanna and Cornelius, a Dutch couple living in Ukraine. This was their second attempt to adopt a child with Down syndrome.
“Once I met an orphan girl named Eva,” recalls Johanna. “She had Down syndrome. Eva wasn’t available for adoption, but at least we were allowed to arrange a guardianship”.
According to government statistics, 400 babies with Down syndrome are born in Ukraine every year. About 250 of them are left behind in maternity hospitals.
The paperwork took half a year. But by the time the Harryvans did all paperwork for the court, Eva died.
After a year, the Harryvans decided to try for another Down syndrome child, and so Milana appeared in their family.
Harryvans’ four biological children, the eldest aged 18, welcomed their new sister warmly.
When asked why the family did not adopt a child in their home country, Johanna looks surprised: “In the Netherlands, parents never abandon children with Down syndrome. And in Ukrainian orphanages, there are a lot of such children.”
According to government statistics, 400 babies with Down syndrome are born in Ukraine every year. About 250 of them are left behind in maternity hospitals.
Partly this happens because of a strong stigma in society, and a lack of support for such children and their parents.
Olga Redvanyuk says when her son, Illya, was born three year ago, she knew he was just like others. “From the very beginning we had no doubts that our child, even carriyng Down syndrome, was just as normal as all other kids,” he says.
But even with the right attitude, you still need a supporting community and infrastructure, and the Early Learning Center has provided some of that.
After coming here for three months, Illya has discovered that his favorite activity is building towers out of huge soft blocks and then ruining them. But there are not so many toys in the center, though.
“Unfortunately, we are not supported by state institutions,” says Serhiy Kuryanov, the center’s director and a parent of a child with Down syndrome. “In the beginning we applied to state agencies for help but we were told that all we could get was a state subsidy of Hr 500 [per month] to pay a teach. We thanked and refused.”
Where the government failed, private initiative helped. Norwegian EDB Consulting Group and local IT firm Infopulse are now providing some financial support for the learning center. But, of course, the money is always in short supply.
The Early Learning Centre sets an ambitious goal of helping children with Down syndrome to eventually become a functional part of society.
Kuryanov says there are some companies in Ukraine that are already willing to hire people with Down syndrome.
By law, every company with a staff of more than 50 people has to provide a certain quota for disabled employees.
“But the thing is that there are no specialists among people with Down syndrome who are ready to work,” he says. “That is because the possibility of educating children with Down’s syndrome is usually disregarded.”
So the next step for the Early Learning Center’s little visitors is to start attending a regular kindergarten or school.
“We didn’t want to send Illya to a kindergarten, because there are no specialized teachers there. But here, in the center, I was told that visiting kindergarten is very important,” says Redvanyuk.
So, Illya is getting ready.
Kyiv Post staff writer Olga Rudenko can be reached at [email protected]
