For many parents who have children with special needs, life can be hard. Where can they get parenting advice if the time-honored traditions of child-rearing refuse to take?
That’s one reason the Down Syndrome Association of Greater Charlotte exists. And it’s one reason why the organization has been holding a picnic for the past 10 years.
This year, the picnic will be held Sunday at Dan Nicholas Park — a relief for parents in the area who are used to driving an hour or more to attend a meeting or an event.
Paul and Lisa Lucas are such parents. Their 13 month-old daughter, Ella Beth, was born with Down syndrome.
Down syndrome, or Trisomy 21, is a genetic mutation of the 21 chromosome. It results in developmental and cognitive delays and distinctive facial features.
Paul Lucas said they found out their daughter had Down syndrome while his wife was still pregnant, when a routine pre-natal test came back with bad news. A lot of couples choose to abort when they hear that their baby-to-be has a developmental disorder, Lucas said, but for his family it wasn’t an option.
Instead, Lucas pushed through the shock and began an intense period of in-depth research on the disorder. Lucas spent more than 20 years investigating child abuse with the Department of Social Services and group homes and was familiar with kids who had special needs.
“The funny thing was, in all those years I’d never come across a child with Down syndrome,” Lucas said.
He looked up everything he could think of over the next six months, and that’s how he found the Down Syndrome Association.
The nonprofit organization started in 1986, and its goal is to help children with Down syndrome fulfill their potential and become functioning members of their communities. But it also serves to help educate the public and to help a community become a more inclusive place, Greater Charlotte chapter Director Kathryn Lariviere said.
Lucas is thankful his family found it.
“Probably a lot of people with a child with Down syndrome don’t know that there’s support out there,” he said.
The Greater Charlotte Chapter holds several events each year — including the Buddy Walk in Charlotte’s Freedom Park — for kids with Down syndrome to meet others, for siblings of those children to meet other siblings and for new parents to learn the ropes from parenting veterans.
The meetings, meet-ups and pages of advice he’s collected have been invaluable to Lucas.
“There’s just a wealth of knowledge,” he said.
From talking to other parents, Lucas has learned when his daughter can be expected to walk, talk and begin school. Just over a year old, she is happy, healthy and already involved in physical and play therapy. Lucas says she is progressing well.
The Down Syndrome Association also offers support groups. Lucas is a member of D.A.D.S. — Dads Appreciating Down Syndrome — and is grateful for the group. He said the hardest thing for a family with a special needs child is trying to raise them alone, without additional help. With the support offered by the Down Syndrome Association and the connections that he’s making there, Lucas knows his family doesn’t have to worry.
And that’s what the picnic is all about, Lariviere said.
“The purpose of this picnic is socialization,” she said.
Anyone with a child with Down syndrome is welcome to come. The picnic will be held at the Friends of Dan shelter at Dan Nicholas Park, from 11 a.m. to 2 p.m. RSVP to Kathryn Lariviere at klariviere@dsa-gc.org.
Rebecca Rider is a Catawba College senior and an intern at the Salisbury Post.