Son's Special Needs Inspire New Lenox Mom's Nonprofit For Inclusivity

NEW LENOX, IL — Jeanine Kozlowski strives to be a know-it-all.

When it comes to her son’s learning experience, Kozlowski is a sponge, seeking out every bit of information she can find, and soaking it right up. The New Lenox woman knows her son has specific needs, and she’s fighting to make sure they’re met.

Kozlowski’s 7-year-old son Austin has schizencapahaly, a rare congenital brain malformation that causes abnormal clefts to form in the cerebral hemispheres of the brain. Austin is non-verbal, and wheelchair-bound. The condition develops in utero, Kozlowski said, and it took some time to diagnose. Kozlowski and her husband Justin adopted Austin one day after his birth.

Find out what's happening in New Lenoxwith free, real-time updates from Patch.

“We knew there could be issues when we adopted him,” Kozlowski said, “but we didn’t know exactly what.”

Austin was diagnosed at eight months, Kozlowski said, and as he’s grown, his needs have become apparent and more pressing. Also diagnosed with septo-optic dysplasia, his vision is impaired. As he entered school, Kozlowski realized she would have to be his biggest advocate.

Find out what's happening in New Lenoxwith free, real-time updates from Patch.

“As soon as we started getting him into school and everything, everything requires for you to be on top of it,” she said. “I started reading more books on special education. I want to be the smartest person in the room at the IEP (Individualized Education Program).

“I just read and read and read and keep learning, until I don’t need to anymore.”

As she pushed to have Austin’s needs met, first at Cherry Hill Early Childhood Center, she realized she was not alone in her pursuit.

“We started to meet other parents, other moms,” she said. “All of us were having problems advocating.”

A group of special needs mom forged a bond and banded together, in a quest to get their kids what they need. Kozlowski ran for New Lenox District 122 Board of Education, but fell short of election. It was a springboard to something bigger, though. The group—now known as Advocates For Acceptance—began seeking answers, turning first to the district’s superintendent and administrators.

“We meet twice a year, we go over everything we want fixed, and need help with,” Kozlowski said. “They’re super-open to our ideas.”

One thing she wanted changed immediately was protocol that any child in a wheelchair or a walker positioned a level higher would be left in a fire safety area, in case of fire or emergency.

“You can’t expect those poor kids to be left there with the fire alarm going off, waiting to be saved,” Kozlowski said. “It’s terrifying to think of.”

She turned to the fire protection district, which implemented new evacuation measures and trained first responders, she said.

As Austin grows, and Kozlowski seeks opportunities for him to play, Kozlowski learned of a We-Go-Swing, a no-transfer, inclusive swing. It features a spacious entry deck that can be connected to a ramp for easy roll-on access, and there’s no need to transfer from a mobility device such as a wheelchair.

It’s something Austin could enjoy.

“I want a swing my kid can swing on,” she said.

She sought help to purchase and install one for Lincoln-Way Special Recreation families. With a donation and the help of New Lenox Mayor Tim Baldermann and the New Lenox Park District, a swing was purchased. It was due to be installed in May, but has been delayed two months, Kozlowski said.

“After I realized how long it took me to get that swing, I realized we had to do something more.” she said.

It was heartbreaking for Kozlowski to think of her son left on the black top during recess at Haines Elementary, playing with bubbles, while other children explore the playground. She’s working now to raise the funds necessary to purchase a swing for Haines Elementary; a swing is estimated to cost $50,000 for purchase and installation.

She recently decided to seek official nonprofit status for Advocates for Acceptance, to help with this mission, but to also expand beyond it.

“We are a nonprofit for special needs’ family, for their kids,” she said. “It doesn’t matter their age, how much money they make.

“If this family needs help, they need help.”

Kozlowski said the organization is focused on making activities and equipment more inclusive, but that they hope to do even more.

“We will purchase adaptive equipment for playgrounds,” she said. “We will pay for sports and any kind of recreational activities a family might not be able to afford.

“Having a special needs kid, it’s expensive. We wanted to take the burden off of families.”

Kozlowski is starting with her focus tight, thinking local, but they’re open to statewide opportunities. They’re currently seeking donations and sponsors to help build their foundation.

Click Here:

“We’re working our butts off to get our names out there,” she said. “We want to make the world more inclusive. Where every kid can play and not be left out.”

Frustrating and humbling at times, being a special needs mom is a unique experience, made brighter by kids like Austin.

“… the happiest kid you will ever meet,”Kozlowski said. “He works harder than most adults. His life on a daily basis is work—to hold his head up, sit up. He has therapy daily. He’s been going to school full-day since he was 3 years old. Anyone who meets him falls in love with him. He gets his point across, even if he can’t speak. He has a communication device—he talks to us and tells us all kinds of stuff all the time.

“He’s happy, he’s an absolute delight. He’s changed my world, for the better. He’s made me a better person.”

She wants special needs moms to know they’re not alone in their fight for their kids.

“Our foundation is unique because we’re moms who live this everyday,” she said. “We’re parents of special needs kids who understand what you’re going through.

“It’s horrible, frustrating, and sometimes you just want to bawl your eyes out in the shower, but you pick yourself up and fight another day.”

Find out more about Advocates for Acceptance on their website.

Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

0 thoughts on “Son's Special Needs Inspire New Lenox Mom's Nonprofit For Inclusivity”

Leave a Reply

Your email address will not be published. Required fields are marked *