Will my child be able to play with other kids? Are people looking at me? How do I understand this child?
Those are among the first questions Evon Mucek-Kucharczyk hears over and over when parents with a new baby or a child newly diagnosed with special needs walk through her doors.
Getting parents over those fears is one of the first steps, says Mucek-Kucharczyk, administrator of children’s services and a developmental therapist at Aspire in Hillside.
The key, she says, is helping parents really see their child through a different lens-not just their special needs, but their strengths-and then building everything from there.
“It takes a lot of work, a lot of intensely focusing on the child,” she says.
Three local moms who are balancing home life, typically developing siblings and special needs-Katie Driscoll, Rolanda Laird and Beata McCann-know just how hard those first days after the diagnosis can be and the effort it takes not to buy into the feelings that the dreams for their children are lost.
‘My child will be a success story’
Two years ago, Down syndrome was just a word to Katie Driscoll. Then doctors discovered the baby she was carrying, Grace, had Down syndrome.
“We were scared and sad,” she remembers.
But Driscoll, a Palos Park mom who already had five little boys at home, isn’t the kind of mom who lets fear stop her. She fought the sadness with information.
Before Grace arrived, she says, she immersed herself in research, connecting immediately with moms who knew all too well what having a baby with Down syndrome means.
She now has a list of tips for new parents in the special needs community:
Celebrate, take photos. “You can’t predict the future, you don’t know what’s going to happen. You can make today great. You just don’t want to have that regret (of not cherishing fleeting moments with your child, particularly their birth). You’ve just got to love that baby because that baby is yours.”
Make it your mission to find a friend. No one will understand what you are going through unless they have been through the good days and bad days themselves, she says.
Support your spouse. “You’ve got to come together, you’ve got to talk about it. It’s hard, but you’ve got to be there for each other.”
Find a therapy program you believe in. “Everything you do today will make tomorrow easier. It is hard, and you do have to work hard. I think a lot of people settle and that is the one area not to settle.”
She says her expectations for Grace are exactly the same as for her boys. “I am determined my child will be a success story. I don’t want her life to be a tragedy.”
She is now sharing her story with a new blog, 5boysand1girlmake6.blogspot.com.
‘I’ve got to find a yes’
Rolanda Laird sensed something wrong with her son, Tremaine, when he was about 6 months old. He would not stand on both legs and kept one hand in a tight ball.
Doctors ran a lot of tests and by the time he turned 1, he was diagnosed with cerebral palsy, she says. Laird spent a lot of time researching and finding programs like Aspire to help Tremaine even though doctors told her he’d never talk and probably wouldn’t walk before he entered school.
“The more they told me no, I said I’ve got to find a yes,” says Laird, a mom of four.
Tremaine, 6, is proving doctors wrong. Laird remembers setting milestones low at first, but has since stopped setting them at all because he surpasses them daily.
“He’s just an amazing kid. Wow, he did it again,” she says, adding that the first thing people notice about him is his smile. “He has taught me not to make exceptions. They just have to learn their way of doing things.”
Over the years, she says looking for the bright side of things and focusing on all of Tremaine’s positives gave her something to hold onto. That’s good advice for everyone, she says.
“You have to accept what you have.”
‘Don’t dwell on the special needs’
Beata McCann’s three kids keep her busy. Really busy.
The biggest challenge this Western Springs mom faces is not with Olivia, 3, having Down syndrome, but balancing her intensive weekly therapy sessions with 6-year-old Andrew’s and 4-year-old Ella’s many activities.
How has she managed? “I try to organize the time as best as I can and just realize I can’t do it all. I just do the best that I can.”
She also has set the same expectations for Olivia as she has for Andrew and Ella. “To be able to function as best as they can, don’t underestimate them. Expect the world and they will meet it eventually.”
While she says she gets sad when she sees what other 3-year-olds can do, she considers all that Olivia can do.
McCann’s advice to other parents: “It’s not as bad as you think it’s going to be. It’s your reality and you adapt to it. Don’t dwell on the special needs.”
Kids’ own timeline
Mucek-Kucharczyk says there are plenty of books about the typical milestones of development, “but there is something to be said about being available and open to understanding your child. Every child has their own timeline. Respecting that and following their lead is how they develop, thrive and grow and develop healthy relationships.”
Parents of children with special needs will find themselves facing unwanted advice, suggestions and comments, she says. And yes, stares.
It can help to focus on the disability itself and not make it personal, Mucek-Kucharczyk says.
Sometimes, in the midst of dealing with the special needs, parents forget their children will also give them the same parenting challenges every other parent faces, from figuring out potty training, to discipline, to getting them to sleep and feeding them.
For that, Mucek-Kucharczyk offers this advice: A lot of trial and error, with a very consistent message.