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.
Two years ago, Down syndrome was just a word to Katie Driscoll.
Then doctors discovered the baby she was carrying, Grace, had Down
"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
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
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
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,
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."
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
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
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
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."
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
Parents of children with special needs will find themselves
facing unwanted advice, suggestions and comments, she says. And
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
For that, Mucek-Kucharczyk offers this advice: A lot of trial
and error, with a very consistent message.
Tamara is the editor of Chicago Parent and mom of three.
See more of Tamara's stories here.
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