‘He is more like my other kids than different:’ Mom reflects on raising son with Down syndrome

March 21 is World Down Syndrome Day

March 22, 2019 12:50 PM

Christina Lorey,

Posted: March 22, 2019 12:50 PM

Updated: August 31, 2021 12:27 PM

by Christina Lorey

‘He is more like my other kids than different:’ Mom reflects on raising son with Down syndrome

MADISON, Wis. — One in 700 babies, less than 1 percent, is born with Down syndrome. Babies with the condition have an extra copy of chromosome 21, which changes the way their brains and bodies develop.

It can be hard for them and their families to live normal lives, but it doesn’t have to be.

Melissa Shutwell’s 3-year-old son Augie was born with Down syndrome. But instead of dwelling on what some consider a dis-ability, Melissa celebrates her son’s poss-abilities.

“I didn’t know what it was going to be like having a kid with Down syndrome,” said Shutwell. Three years later, she does.

March 21 is World Down Syndrome Day. This year, the global theme is “Leave No One Behind.” It’s a push to give every single person with the condition, like Augie, the same opportunities as everyone else in every area of life.

Now, the Shutwells know that’s possible. “Life was going to be just fine, and it’s proven to be more than fine,” said Shutwell. “It’s pretty great.”

World Down Syndrome Day is a time to recognize people living with Down syndrome as just that, people, first and foremost. It’s also an opportunity to celebrate what they’re capable of, as well as to share some information about local resources available to parents of kids with the condition.

Children born with Down syndrome often experience medical complications at birth. Augie did. Those complications are costly, but Medicaid programs can help cover bills that insurance plans don’t.

The Madison-area Down Syndrome Society provides a bunch of local resources for families who have someone with Down syndrome. You can find a link to those resources here.

One of those, the Parents’ First Call program pairs first-time Down syndrome families with those who are further along raising a kid with Down syndrome.

“Having a family that we can hear what’s it really like versus what you might read on the internet or in a book is valuable,” said Shutwell.

Gigi’s Playhouse, a Down Syndrome Achievement Center, is another local resource working to give people like Augie the same opportunities as everyone else in every area of life.

Thursday night, there’s an event, “Gallary 21,” to raise awareness for people in our community living with Down syndrome featuring art exhibits at the Memorial Union on campus.

If you can’t go, celebrate people with an extra chromosome by wearing brightly colored, mismatched socks.

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