Nearly 20 Illinois families gained valuable knowledge, support and connection for raising a child with hearing loss during the annual Institute in June  

June 10-14, 2025, marked 80 years of the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

This free, annual program is for parents and caregivers of children ages 6 and under who have an identified hearing loss. It helps families learn, connect, and find support all in one place.

Since 1945, the Institute has welcomed families at the Illinois School for the Deaf (ISD) campus in Jacksonville. This year, 18 families from across the state found community and connection at this five-day program.

The Division of Specialized Care for Children (DSCC) helps support the Institute, along with other sponsors.

Support for the Whole Family

The Institute is more than a learning program for parents. It’s a family-friendly event where everyone can join in.

“It really is a valuable experience for everyone who comes,” said Angela Kuhn, director of the Institute and an administrator at ISD. “It’s an event that is inclusive of everyone in your family.”

Parents Rogelio and Lizeth came to the Institute with their 10-year-old son, Roger, and their 2-year-old daughter, Aliah. Aliah was born with Microtia, a condition that affects the shape of the ear and causes hearing loss.

Their family came to the Institute to learn how to best support her development.

“We have learned a lot, how to help my daughter and how to make us stronger, how to defend her, how to prepare her for the future,” shared Lizeth.

“My son Roger has been learning how to help his sister,” added Rogelio.

While Aliah was busy playing with her peers and receiving evaluations from professionals, Rogelio and Lizeth spent their time in workshops and lectures for parents. Roger joined the sibling program, where he took American Sign Language (ASL) lessons and made friends with other siblings of children who are deaf or hard of hearing.

By the end of the week, Roger had formed a close bond with other siblings in the program, including Michael (7), Neela (11), and Jezreel (12).

“I wasn’t expecting that…”

Michael came to the Institute with his mom, Brittany, and his younger siblings—Dominic (age 1) and Gianna (age 5). Gianna is profoundly deaf and has CHARGE syndrome, a rare genetic condition that affects multiple parts of the body.

At first, Michael wasn’t sure what to expect. “I expected that it wouldn’t really be that fun, I wouldn’t meet any kids to play with,” he said. “But I guess I did—and it was really fun.”

Michael and his new friends spent almost every moment together.

“He’s just like, ‘Hi, Mom. Bye, Mom.’ And I’m like, ‘Oh, okay, bye,” Brittany said with a smile.

“I wasn’t expecting that part to be so neat,” she said. “To see them as strangers on Tuesday and then to watch them eating lunch together, being inseparable, that was really cool.”

Extraordinary Connections

Institute and ISD preschool teacher Natalie Garver explained how attendees transform from strangers at the start to a close-knit family by the end.

“It’s so cool how we show up day one and everyone’s kind of looking around like, ‘Was this a good idea? This seems kind of awkward.’ By the last day of Parent Institute, it’s like, ‘Bye, we’re going to miss you. Like, let’s keep in touch, find me on Facebook,’” she described.

“When you share this kind of experience with other people, the connection you can make with families is just extraordinary in such a short amount of time.”

Natalie has taught children who are deaf or hard of hearing for 17 years. She has worked at the Institute for several of those years. Natalie is one of many returning team members who make the experience feel like home for families.

“The staff here does a really good job of making it almost a family setting and culture,” said Institute parent Brent.

Brent and his wife Rebecca are the proud parents of Cash, age 5. They live in Jacksonville where Cash, who uses cochlear implants, is a student at ISD.

 “It’s our job as parents to stay informed and stay involved and keep learning,” Rebecca said. “The Parent Institute is perfect for that.”

“There’s a community for us and they’re closer than we think.”

While Cash and his family are locals, many families travel from all over Illinois to attend the Institute.

Cindi and her 2-year-old daughter, Luna, made the trip from the north side of Chicago. Luna is the first person in her family to be diagnosed with hearing loss.

“This is all brand new. I felt lost, like nobody around the neighborhood that I know of had children with hearing loss,” said Cindi.

“Coming here, I’ve connected with so many parents. I actually found a neighbor, not literally a neighbor, but she’s so close by that we take our kids to the same playground, and we never even noticed. So, it’s been great. There’s a community for us and they’re closer than we think.”

DSCC Family Liaison Violet Wiker, who helps families enroll in the Institute, emphasized the value of these new friendships and their lasting impact.

“I think it’s very wonderful when you walk around the cafeteria and you can hear the kids scream across the line asking mom if they can sit with their new friend…” Violet said.

“And then you see mom and dad making another friend at the lunch table, and they’re sharing experiences and they’re not even in the same location, but they found a friend that maybe they can take home with them and connect with later to say, ‘Hey, I’m feeling this sort of way,’ or’ Hey, do you have a suggestion here?’ And we built that network now.”

Looking Ahead

The 80^th year of the institute was full of learning, laughter, and new friendships. Families left with more knowledge, stronger support systems, and lasting memories.

Tori Lynch, an Institute cadet, looks forward to the Institute’s bright future. “I have no doubt it’ll go on 80 more years.”

Find more memories from the 2025 Institute on our Facebook page in our 2025 recap album. You can also see videos that highlight different parts of the Institute experience on our YouTube playlist.

The following organizations supported the 2025 Institute:

• University of Illinois Chicago’s Division of Specialized Care for Children (DSCC)
• Department of Human Services – Division of Rehabilitation Services
• Illinois School for the Deaf
• Illinois State Board of Education
• Illinois Department of Public Health
• Ann & Robert H. Lurie Children’s Hospital of Chicago

For more information about the Institute and how DSCC supports children with hearing loss, call (800) 322-3722 or email dsccinstitute@uic.edu.

Fowler Bonan Foundation, a southern Illinois nonprofit, worked with DSCC’s Marion Regional Office to provide shoes and clothing for participant Renesmae and her two younger siblings

Renesmae is an outgoing 5-year-old who loves unicorns. She recently started kindergarten with extra sass and confidence thanks to new unicorn outfits and orthotic shoes for the school year.

Renesmae and her two younger siblings received a free back-to-school shopping spree for these much-needed items and more from the Fowler Bonan Foundation.

Renesmae’s care coordination team from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) partnered with the foundation to make the special shopping trip possible,

“There’s a lot going on. With the kids starting school, we just didn’t know what we were going to do,” her mother, Misty, said during the shopping trip.

“Everyone at DSCC is really nice. They help with rides to the doctors and other things, but we never expected this. I can’t believe we’re shopping! It’s just above and beyond.”

A family in need

Renesmae has been a DSCC participant for most of her life.

“She had viral meningitis and severe seizures when she was 2 months old,” Misty said. “She has partial paralysis on her right side, can’t open her right hand on command or raise that arm very high, and limps or drags her foot when she walks. Thankfully, she hasn’t had any seizures in a while.”

Renesmae also has hypertonia, which makes her muscles stiff and difficult to move, and homonymous hemianopsia, a condition that causes her to see only one side of the visual field of each eye.

Misty describes Renesmae as “outgoing and not one bit shy.”

“She’s my absolute handful and, like the country song says, can be ‘t-r-o-u-b-l-e,’” she said. “She’s also a great big sister and is always doing stuff for her little brothers. She’s such a mother hen to Liam and Aries.”

Liam is an infant, and Aries is 3. Aries is now starting Head Start, a program that promotes school readiness.

Renesmae’s DSCC care coordination team includes Care Coordinator Cheryl Golliher and Program Coordinator Assistant Renee Woodson. They partner with Renesmae’s family to find treatment options, transportation to appointments and other services to help Renesmae thrive.

“The family let me know they needed help getting her orthotic shoes,” Cheryl said. “Renesmae wants to be like every other kid. The shoes look like any other pair of shoes but are different sizes and fit her brace. The shoes are an important part of keeping her focused on positive things, not other distractions.”

As Cheryl and Renee looked for options for Renesmae’s footwear, they learned all three siblings needed new clothes and shoes for the school year.

A local nonprofit ready to help

Our DSCC care coordination teams can help our participant families find community funding opportunities and resources to meet these important needs.

Amy Jones, DSCC Regional Manager for our Olney and Marion offices, and her team contacted the Fowler Bonan Foundation to see if they could help Renesmae’s family. The foundation provides clothing and shoes to low-income children through their Clothes for Southern Illinois Kids initiative.

“They agreed to help buy clothes and shoes for all of the children and asked that we join their volunteers to help the family shop,” Amy said. “We contacted the family and worked with the foundation and our team to get everything set.”

Bobbie Fox is a Fowler Bonan board member who began volunteering with the organization nearly two decades ago.

“My family was new to the area, and I worked as a store manager. Back then I did all the shopping for our families on my lunch break,” Bobbie explained. “Now, more people know about us and that we offer help in 17 counties throughout southern Illinois. We work with local organizations, community businesses, teachers and others to fundraise and make sure that every bit goes out locally to reach our families and help kids.”

 Time to shop

Everyone met at Walmart in Anna on July 20 for the shopping trip. The group included Renesmae’s family – her parents, Misty and Jerry, and little brothers, Liam and Aries – and Bobbie from the foundation and her daughter, Saylor.

Cheryl and Renee were unable to attend. Their teammate Jimmy Baldi, a DSCC Program Coordinator Assistant from the Marion office, volunteered to join the group and help shop.

The first stop was the shoe department. Mom and dad located the right sizes, but the kids had a tough time deciding with so many options to choose from. Renesmae selected Minnie Mouse sandals. Aries went with the Batman sneakers.

“We want to be sure that the kids have shoes and other essentials, such as socks and underwear, in addition to everyday clothes,” Bobbie explained. “The foundation typically provides $100 to $150 for each child to cover these needs.”

A team effort and “win-win for all”

Everyone did their part to help Misty and Jerry feel comfortable and find items the kids needed.

The group took turns hunting for unicorns and superheroes (Aries’ favorite), suggesting styles and finding the right sizes.

Everyone’s efforts were worth it. At the checkout, the kids were happy campers and Misty couldn’t believe they each had five new outfits for school along with plenty of underwear and socks.

Jimmy even snuck in some baby time with Liam.

“I’m really amazed and just so thankful to the foundation and everyone,” Misty said. “These will be hidden away until school starts so that they don’t get messed up.”

As the shopping trip ended, Bobbie exchanged high fives with Renesmae and got a big hug from Aries.

“It’s such a joy to be able to do this,” Bobbie said. “The focus on the kids, partnering with other organizations and individuals. It’s a team effort and a win-win for all.”

The Fowler Bonan Foundation also ordered Renesmae’s orthotic shoes.  Jimmy later traveled to the foundation’s headquarters in Harrisburg to pick them up. Cheryl delivered the shoes to the family.

What started as a team effort, ended as a team effort.

“The Foundation is a great resource and so quick to respond to the needs of our families,” said Cheryl. “The shopping trip helped relieve so much stress and worry for the family. It was a great team effort in every sense of the word. I hated to miss the shopping trip, but Jimmy volunteered to go and really loved going.”

We’re thrilled our Marion Regional Office team and the Fowler Bonan Foundation came together to support Renesmae’s family. A big thank you to Fowler Bonan for providing the generous shopping spree!

If you would like to volunteer to help the foundation or know of a family or child in need, please contact them at FowlerBonanFoundation@gmail.com.

You can see more photos from the shopping trip on our Facebook page.