Hi Kristen! What can you tell us about FHSR at a basic level?
Few people know that statistically, 2-3 babies born out of every 1000 in the Chicagoland area have hearing loss at birth. Early detection and early intervention impact lifelong results.
For more than 65 years, the Foundation for Hearing and Speech Resources (FHSR.org) has been a grassroots non-profit organization with a mission to support children and young adults with hearing loss. FHSR creates and funds unique programming to help deaf and hard-of-hearing children thrive.
From education to music to community to clinical support, FHSR bridges that gap and helps children with hearing loss achieve all they want in life.
Great! Moving on, what is 1 3 6 and how does FHSR tie into it?
Great question. 1 3 6 is FHSR’s awareness campaign around pediatric hearing loss. One of the biggest issues we are facing right now are parents in the Chicagoland metropolitan area not following up when their baby does not pass their newborn hearing screening test. All children born in Illinois are to have a newborn hearing screening test to determine if there are any issues with the baby’s hearing. If there’s an issue, the families are asked to follow up within a month at their local pediatric audiology clinic.
What we’re seeing, based on a report that the Illinois Department of Public Health did in 2021, is that there’s a problem with parents making that follow-up appointment. When your child is born with hearing loss, time is of the essence. We want to make sure that we communicate to the parents the importance of making that follow-up appointment to retest their baby’s hearing within a month of their original test. This way if there is an issue with the baby’s hearing they can start on a path to receive support and services.
Take the 1st Step
Within the first month, we need to do the re-screening. Within month three, ideally, parents would want to have all the diagnostic tests run and any assistive technology the baby may need in place and ready to go. By month six, families will want to have their baby enrolled in Early Intervention and therapeutic services in place to give the child the best opportunity for healthy outcomes and lifelong results.
What is the mission of FHSR?
Our mission is to level the playing field for kids with hearing loss. Every program we create is science-based, it is informed by a Board of Directors who have either been either been touched personally by pediatric hearing loss or who work in pediatric hearing loss fields. Our goal is to create programs that support the whole child, helping children with hearing loss achieve whatever level of success they want.
What are 3 key takeaways that we should consider from FHSR?
- We’re firm believers in early intervention and early action when children are young. Time and again we’ve seen it proven in our programs that it takes one advocate – one adult caregiver to make a difference in a child’s life. The sooner you make a plan to decide how you’re going to address your child’s hearing loss, the better your outcomes and results will be.
- We truly believe in a sense of community and work hard to make a compassionate, healthy atmosphere for you and your families. Pediatric hearing loss is low incident – it’s been called “The Silent Disability”. Normalizing hearing loss has always been a priority for us. Keeping a sense of community helps us support the parents and the child, so they feel that they know children who look exactly like them.
- Our final piece is the idea of making a parent the best resource. We feel that the more educated the parents and caregivers are on pediatric hearing loss, the better they’re able to advocate for their child. This then helps the child learn to advocate for themselves on their own. Self-advocacy and positivity really make a huge difference when it comes to a child’s future.
FHSR helps kids from birth through young adulthood. What are the best resources for a parent with a child dealing with hearing loss? Who should they reach out to and where should they look for help?
The first thing I’m going to tell that parent is to look at our website. We have a program online that’s free to anyone who visits our website, called “Ages and Stages”. The program starts when your child has failed their hearing screening and does not pass the follow-up screening. It is built to give parents and caregivers key information on pediatric hearing loss and encourages families to start addressing the hearing loss as soon as possible. This online resource teaches the parents what an audiogram looks like, what the testing is going to be, and what their options are so the parents have the knowledge and the ability to make informed decisions and advocate for their child.
In addition to that program, we have an excellent music scholarship program, which is very near and dear to my heart, called “Music To My Ears”. This program starts from birth encouraging parents to create a music-rich home environment for their baby. We’ve partnered with some of the preeminent music schools around Chicagoland to provide early childhood music classes. Again, they start at birth and go up to four years of age where a child and their caregiver can come in and take a music class once a week, free of charge.
Being exposed to the wonderful science and beauty of music at that age is such a gift. I’m a huge fan of that program. It also grows with children as they get older. We continue to support the program because we really believe in the benefits music education can impart to children, such as literacy and math in addition to expressive language, which supports deaf and hard-of-hearing children. From language acquisition to sentence structure to receptive hearing and socialization, it’s amazing. All this is available to children with hearing loss in the Chicagoland area.
What are three success stories or lessons learned that you can take away from your experience with FHSR?
Going back again to the idea of early intervention and early action, we have some children who have been with us almost since birth. To see those children grow, continue to blossom, and participate in our programs is very exciting. We have children who’ve participated in our Music To My Ears program in Early Childhood Enrichment who now play piano. They’ve taken our classes through our curriculum schools — they’ve also come to our music therapy program. Seeing these children grow and become their best selves and self-advocates is wonderful. We’re very lucky to be able to do the work that we do.
I can’t reiterate enough the importance of creating your team. For families, it’s important to find people who are going to support you and your family’s journey. Be it your speech-language pathologist, your developmental therapist, your audiologist, or just your whole team — making sure that your child is surrounded by people who all help work towards the goal that you’ve set forth for your child’s life is key.
It goes back to being your child’s advocate. Creating a lifelong advocacy skillset for children with hearing loss helps them grow into successful adults. When we interview kids who are going to college, the one thing we continuously learn is to be your own best self-advocate. To me, that is crucial, along with starting the work as young as possible which carries through to adulthood. Those are the kids who now are able to have their needs met as they get older and become successful.
It’s almost similar to a mindset that teaches you how best to advocate for yourself. It also helps lead the conversation about how to best communicate about your hearing loss in various settings, from social to academic. Being able to raise your hand and say “I didn’t hear that,” or “I need to sit at the front of the class,” or “I need to hear that again,” in a large classroom is a huge step forward.
Also, being able to say to a friend “I didn’t hear you, could you please repeat that?” or “Hi, I’m Kristen, and I have hearing loss,” is extremely helpful for self-advocacy. That sense of confidence is imbued by the parents. The more we can get parents on board from the beginning, the better the outcome for the children.
Where can we find out more about FHSR?
Come visit us at our website FHSR.org. We’re also on Instagram and Facebook. We’d love for more people to be friends of the foundation. We have wonderful information available on our website. We have a newsletter that goes out quarterly — it brings our community up to speed about what’s happening in both the foundation, generally, and up to speed on issues surrounding pediatric hearing loss.
This has been wonderful. Thank you so much!
Thank you! Have a great day.
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