Families Gain Expert Guidance and Support Network for Raising Children with Hearing Loss
The 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing provided education and connection to 27 Illinois families.
Marcellus Weldon and his daughter, Mariana, were born with the same rare genetic disorder called Treacher Collins syndrome.
It affects the development of the head and face, including the ears.
“We don’t have any ear canal or any ear at all, on both sides. So, we’re profound to moderate deaf. It just happens at birth,” Marcellus explained.
He uses the analogy of a car to describe living with their disabilities.
“Growing up, I was the passenger, and my mother was the driver because she also has the same condition as me,” he said.
“Now that I’m the parent, I’m the driver and Mariana is the passenger. And we have to go through hills, valleys, twists and turns together. And there’s going to be things that I just can’t do with her.”
The desire to give Mariana, 6, the knowledge and tools necessary to be her own “driver” led the Weldon family to the 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.
The Institute is a free, annual program for parents and caregivers of children ages 6 and under who have an identified hearing loss. It focuses on helping families find answers, build connections and access resources all in one place.
During the four-day program, Marcellus watched Mariana bond with other children. He also learned more about his family’s type of hearing loss, education options and how to best support Mariana through school and beyond.
“It’s nice for me to see her thrive not only academically but socially, and she’s just been blossoming like no other. And that’s a beautiful thing to see,” he said.
“She has a community. She has somewhere to go,” Marcellus continued. “She has resources that I never had — someone to fill up her tank, using that analogy.”
The Weldons were among 27 families from all over Illinois who attended this year’s Institute from June 13-16 on the Illinois School for the Deaf (ISD) campus in Jacksonville.
The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors.
“Parent Institute for me is exactly the soul and the heart of what DSCC’s mission is. You have our mission statement as partnering, helping and connecting. And this program is the epitome of what that is,” said Violet Wiker, DSCC’s Family Liaison who helps families enroll and prepare for the Institute.
Continue reading and watch the recap video below to for powerful parent and staff testimonials from the 2024 Institute:
Expert advice and guidance
The Institute provides valuable education and networking for children with hearing loss, their parents/caregivers and their siblings.
Participating parents and caregivers attend daily lectures by experts in the field to learn about raising a child with hearing loss. They also meet in small groups with professionals to discuss specific concerns and connect with other caregivers.
“They go through classes, they have educational experiences, they get to make friends that are people that are living their journeys and then interacting with the professionals that can give them great advice and guidance and expertise on how to go forward from here,” Violet said.
The children with hearing loss attend classrooms with experienced teachers of children who are deaf or hard of hearing. They play with one another and often develop deep friendships.
Each child also has the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations.
“All of those are these amazing comprehensive reports that (families) can take with them out into their communities where they need those reports and those recommendations,” Violet said.
Siblings also attend and stay with their families in the ISD dorms. The siblings have their own teachers and take part in fun recreational activities.
“No one ever leaves disappointed and without fail, by the time we depart at the end after the graduation ceremony, people are always very grateful, glad that they came and they have taken away a lot of knowledge and information,” said Angela Kuhn. Angela is an ISD administrator who serves as the director for the Institute.
“They have really a connection with the staff here at the School for the Deaf and DSCC employees that lasts for a lifetime.”
“We understand each other”
Mayra Villarreal attended the Institute looking for knowledge, community and others who would understand her family’s situation.
Mayra’s daughter, Miliani “Mili” Carmona, 6, has a rare genetic mutation that causes progressive hearing loss. It also causes retinitis pigmentosa, a condition that affects the eyes and leads to gradual vision loss, as well as seizures and other neurological problems.
The Institute helped Mayra understand how Mili perceives the world.
“The first thing that really hit a ‘wow’ moment for me was when we were doing the educational part about the hearing impairment, and they played that hearing loss simulation video. And hearing where she was, it was just surreal because you don’t really get it. You could try all you want to understand what your child’s going through, but you don’t get it unless you’re in it…” she said.
“It broke my heart. But it also made me understand her more… and see why things have been so hard for her.”
Mayra also found understanding for herself from both the Institute staff – many of whom have hearing loss themselves or are related to someone with hearing loss – and the other families.
“Everybody’s connected in some sort of way, and that’s why I feel like everybody here has such a passion for it,” Mayra said. “I’m lucky enough to take back these relationships that I have built with these parents because we might not be on the same journey, but we understand each other.”
Parent Megan Andresen and her 5-year-old son, Victor, are both deaf from Waardenburg syndrome.
“Coming into this I wanted to learn about my son’s behavior. Then I learned about implants and cued speech and different things, and it really opened my eyes.,” she said.
“The thing I think I’ll take away is as parents, whether we’re deaf or hearing, we have that same commonality because we do have deaf children, and it’s not different people in different groups,” she continued.
“It’s everybody really together, all coming here for the betterment of their children and to learn about their children.”
Sarah Dupuis’ daughter, Kimberly Pham, is 5 and was born with Down syndrome and mild to moderate hearing loss. As a special needs parent, Sarah said the opportunity to relate with other families is invaluable.
“Having a kid with special needs is so isolating. And to just be here with other families that face the same struggles… You’re sharing all of these stresses together, and it’s so cathartic,” she said.
Sarah and her husband, James Pham, also enjoyed the opportunity to immerse themselves in the classes and conversations without the distractions of day-to-day life back home.
“When you’re a parent of a child with special needs, you’re so overwhelmed all the time. And we just need resources, and it’s so hard to figure all those resources out by yourself,” Sarah said.
“You can come here, you can get the camaraderie with the other parents. You can learn about all kinds of things that you didn’t know about before. And it’s just so great. So, we’re really grateful for this.”
Inclusion and lifelong friendships
Lauren and Jonathan O’Brien traveled to the Institute with their daughter, Alannah, 7, and son, Josiah, 4.
Josiah has a genetic deletion on chromosome 15, which causes global delays with a bilateral hearing loss.
Alannah loved the sibling program and made a best friend with another girl in her group. Lauren and Jonathan also befriended the child’s parents.
“I think the most important thing was for us to find a community because we are blessed to be in a really good school district with a deaf and hard-of-hearing community. But there’s not always kiddos that also have all their diagnoses going on. And so here, you not only have the Deaf culture, but there were other kiddos that had similarities to him cognitively,” Lauren said.
“It’s just been amazing for us to have the parent side of it and then to know that (Josiah)’s being seen by all of these top specialists in the field. And then (Alannah)’s having the time of her life with other siblings. It’s so special for all of us to be here together and to get this experience.”
Ramie Nauman’s daughter Alivia is 6 and has a fluctuating hearing loss along with other health conditions. They attended the Institute along with Alivia’s big sister, Malley, who is 19 and studying in the deaf and hard of hearing education program at Illinois State University
Alivia is mostly non-verbal and communicates through sign language. Up until attending the Institute, Ramie and Malley were the only ones who signed with Alivia outside of her school.
“She doesn’t have a lot of people to actually talk to all the time. So, we wanted for her to be able to talk to other kids and other adults. And we’ve heard about the school (ISD) and that everybody signs, and so, she’s been super excited,” Ramie said of preparing for the trip to ISD.
Alivia’s excitement only grew once she arrived on campus and could sign with everyone she met.
“I love to see her in her element, talking to the cook and talking to everybody. So, I think that’s been really fun to watch her be able to communicate with everybody here, which she’s never had before,” Ramie said.
“I feel like everything’s just way less scary because she knows, ‘OK, I can talk to anybody,’” Malley added.
Alivia’s Institute classmate Kingslee also benefited from that immediate sense of belonging, his grandmother Constance said.
Back home in the Collinsville area, Kingslee was the only deaf child in his class. Therefore, his exposure to sign language and communicating with other kids was minimal.
During the Institute, Kingslee formed fast friendships and didn’t want to leave his classroom.
“It’s like a family here. Like my grandmother always said, ‘It takes a village to raise a child.’ And I see this here is his village,” Constance said.
To families thinking about attending the Institute next year, Constance has a simple message.
“Come. If this is your state, come,” she said.
Learn more about the Institute
Visit our Facebook page to see an album of photographs from the the 2024 Institute.
In addition to DSCC, the following organizations supported this year’s program:
- 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.