Raising a family with special needs

Breathe! Faith or fear? The universe is abundant and full of resources.

These words of encouragement, written in pen and marker on strips of construction paper, are taped on the cupboards and doors of Kathy Lavin’s Chicago home-a casual, inspirational complement to her paintings that hang more permanently on the walls.

Painting is a hobby.

Life is a mystery.

And there’s a divine timing to it all, Lavin says.

For Lavin, 43, this belief is as much a part of her life as the supposed coincidences that have shaped it.

It hasn’t always been easy for Kathy to embrace the divine timing and mystery of life, though. It’s a daily practice, she says.

As her children filter into the house and drop their things by the front door, Michael asks, “What’s been happening?” Kathy replies, “Oh we’ve just been hanging out; Emily’s doing her thing. You know.”

Emily, bright and curious like any 13-year-old, spends her time after school captivated by a television show and a snack. Unlike other teenagers, Emily struggles to communicate-an obstacle that proves frustrating and heartbreaking for the Lavin family.

Kathy’s first child was born with Down syndrome and, at first, the young mother felt angry. But she says she has decided that Emily’s birth, paired with her years spent working in the field of disabilities, might have been much more than a coincidence.

“I think you attract certain things in your life,” she says.

After graduating from Boston College with a degree in human development and education, Kathy started her career working with people with disabilities in 1988.

First she oversaw group homes for Catholic Charities in her home state of New Jersey. Eventually, at age 27, her path led her to Chicago when she began doing research at the Institute on Disability and Human Development at the University of Illinois at Chicago.

She forged lasting bonds with people in the group homes and those at work, though her managerial roles didn’t require it.

“True to Kathy’s nature, seeing what she could do and how she could help people flourish was her motivation,” says Selima Ani, a former co-worker.

At the same time, Kathy met Jack Lavin and they married in 1995. A year later in May, Kathy graduated from the Jane Addams School of Social Work. Emily was born in June. Kathy felt her life fill with fear.

“Even being a professional, when it happens to you, it’s a totally different ballgame,” she says. “I thought, ‘I can’t do this. I cannot go back to working with people with disabilities.'”

Lynda LaCombe, Kathy’s friend since college, says Kathy has always been open about the emotions she went through when Emily was born.

“Kathy loves Emily and delights in her, but she has always been very honest that it was difficult,” LaCombe says. “Being a person who worked with adults with disabilities, she knew right away what Emily’s future could hold and she grieved for that.”

In the years after Emily’s birth, Kathy shifted gears from her professional path and worked as an advocate and volunteer. Among other endeavors, she became a founding board member of Belle Center of Chicago, a non-profit organization serving the needs of children with disabilities. She also had two more children, Michael, 11, and Katie, 5.

Despite her love of Emily, “having Michael was a healing moment for me. It proved to me I could believe in myself to create something perfect,” Kathy says.

Meeting the challenge of having a child with special needs only a year into her marriage, Kathy’s mother worried for her daughter’s relationship with her husband, Kathy says. But she and Jack have become closer.

In fact, along with a trip to the cardiologist and ophthalmologist, Emily’s doctor listed date nights for the parents as part of the treatment plan for Down syndrome.

“So we date every Friday still,” Kathy says.

After 12 years of volunteer work and raising her children, Kathy is now the director of community relations at Neumann Family Services.

It’s easy for moms to get lost in their children, especially if one has special needs, Kathy says.

“The biggest lesson for me is to say it’s OK for me to put my oxygen mask on first,” Kathy says.

And with that, she went back to spelling “Thursday” for Katie, asking Michael about his day and making sure Emily had everything she needed.

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