October is National Down Syndrome Awareness Month
Braylee Ness, 3, Molly Sullivan, 8, Hunter Bertuleit, 8, and Joy Edyvean, 14, are like many children — they like meeting people, making friends, learning and playing.
These four children — all part of the North Branch Area Public Schools system — have some of the same highs, lows, success and struggles as their peers, but there is one aspect about them that sets them apart: They all have Down syndrome.
Last week, these four children’s parents met at the North Branch Area Education Center to talk about what it’s like to have children with Down syndrome and to dispel some of the stereotypes surrounding the genetic condition.
Tina and Tony Ness had a rough start with their daughter. Shortly after Braylee was born, a nurse told them children with Down syndrome have about a 45 percent chance of having heart problems.
Their daughter had extensive heart problems, had to be resuscitated numerous times and had open-heart surgery.
Since those first few tenuous months, Braylee’s physical condition has rebounded, and now she’s a healthy, energetic young girl.
Even though her parents hope she’s out of the woods when it comes to her health, Braylee faces another challenge as she ages: judgment by those who don’t understand her condition.
Tony Ness said recently he and his wife had dinner with some older family friends, and one of them described their daughter as “mongoloid.”
“I had to bite my tongue on that one, but she didn’t say it derogatorily. … That’s just what they said back then,” Tina Ness said.
Tony Ness added, “I think people are just uneducated on what Down syndrome really means. It’s just something a little different; they’re going to do it a little slower.”
Tina Ness said what frustrates her most is when people only focus on the fact that her daughter has Down syndrome.
“What drives me crazy is when people put the diagnosis before the kid,” she said. “The child needs to come first. It’s not Down syndrome Braylee; it’s Braylee is a child who has Down syndrome.”
Mary Kay Edyvean, Joy’s mom, agreed with that assertion.
“It’s what they see — not the name, not the person behind the diagnosis — it’s what they see.”
Difficulty keeping up with peers
Early on, the parents agreed that the differences between their Down syndrome children and children without the disorder wasn’t especially noticeable in school.
But each year, the struggles become more and more noticeable, which can be frustrating for them and their children.
“Hunter wants to badly to keep up with his peers, which is a good thing because it motivates him to keep working hard with them, whether its playing games or doing what they’re doing in gym,” Hunter’s mom, Amanda Bertuleit, said. “But he gets frustrated because he can’t always keep up.”
She noted that her son isn’t very vocal, which is sometimes another barrier, but he’s starting to get better at using language to communicate.
Molly’s parents, Jenny and Mike Sullivan, are also experiencing many of the same frustrations with their daughter, even though she’s more vocal.
“She gets so frustrated so easily,” Jenny Sullivan said. “She knows there’s stuff she can’t do and it just aggravates her. When she gets frustrated, she gets naughty — it’s hard for her because I think she understands there’s stuff that she should be able to do, but she can’t, and it frustrates her.”
Jenny Sullivan added, “She’s always been incredibly verbal, and that’s helped her with some of the frustrations, but as she gets older, I think there is more of a divide now than there was in, say, kindergarten. In second grade, it’s becoming more noticeable to us and, I think, to her.”
So far, Jenny Sullivan said her daughter’s peers have been pretty good about accepting her, but as they age, they notice she’s not exactly like them.
“It’s unfortunate, but I think it’s just human nature — kids are just going to start to notice stuff more,” Mike Sullivan said.
A false perception about Down syndrome
The parents also noted that there’s a perception that anyone who has Down syndrome is always in a good mood.
It’s true that their children are generally outgoing and may have less of a filter when it comes to talking to complete strangers than children who don’t have Down syndrome, but they all have a myriad of emotions and aren’t in one emotional state all the time.
“Molly is sometimes one of the crabbiest people I know,” Jenny Sullivan said with a laugh.
Tina Ness said she’s been approached by people who think her daughter is never irritable.
“So many people are like, ‘Downs kids are so loving; they don’t throw temper tantrums.’ Really? Come to my house.”
Concerns about the future
Like other parents, the parents of children with Down syndrome sometimes worry about their children’s future.
Being the parent of the oldest child of the group, Mary Kay Edyvean was able to share some of the experiences she’s had with her daughter through the years and aspects of some of those experiences that concern her.
She said, during her daughter’s elementary school years, teachers were great about working with her to get her to learn as much as possible, but learning has become more of a struggle as she’s progressed into junior high.
She also noted that she worries about people taking advantage of her daughter because she’s so outgoing and will talk to almost anyone.
“Everywhere I go with her, people are saying hi to her — They’re like, ‘Hi, Joy,’” she said. “I’m looking like, ‘How do you know her?’”
Even though there are a host of challenges to wade through when raising children with Down syndrome, the parents all said they love their children unconditionally and wouldn’t change the experience they’ve had of raising them. They noted there are many highlights to being the parents of children with Down syndrome.
“Molly will come up and just give you a kiss for no reason, or hug you or say, ‘mommy, I love you; mommy, I’m going to miss you,” Jenny Sullivan said.
Mary Kay Edyvean said raising her daughter has given her a new, valuable perspective on life.
“Seeing the world through Joy’s eyes has taught me a lot on how to treat other people,” she said. “Things are very simple in her world, and it keeps my life simpler.”
Jenny and Mike Sullivan said their daughter has helped them become more outgoing people.
“I’m a shy person – you can’t go anywhere with Molly and be anonymous,” Jenny Sullivan said. “People know me through her. She sticks herself out there and she pushes me out of my own self.”
Jeremy Bertuleit, Hunter’s stepdad, said he’s amazed at how much he’s learned since coming into his son’s life when he was 3 years old.
“The things that child has taught me about patience, understanding, … taking a step back and trying to look at the world from a different view — he’s taught me more than I’ll probably ever teach him.”
He said he wanted people to know something important about all children with Down syndrome: “They’re just kids — don’t label them by their genes,” he said. “When Hunter is in our house, there are four kids. One of them just happens to have Down syndrome.”