We all know that young children need adults to advocate for them since they’re too young to speak up for themselves. Overseeing your child’s education and first steps out into the world can be both your greatest joy and biggest challenge. With so many different decisions that need to be made, all babies need strong voices to make sure they have the richest opportunities during their early years.
Although parents are natural advocates for their children, they often feel inadequate to do so when they first learn their child has a hearing loss (or any other diagnosis for that matter). This is compounded by the fact that most children with hearing loss are born to parents with typical hearing and no history of hearing loss in the family. For most parents, their child is the first person with hearing loss they’ve ever met.
Surrounding yourself with professionals who can support you by providing unbiased and evidence-based information is the key. This ensures that parents can gain the confidence to make informed choices. After all, no one knows a child better and has their best interests in mind like the parents.
The world of hearing loss can be wide and overwhelming, so finding a balance of information is important. If it’s your first time navigating there’s a lot to learn. But how to do this when you are grieving and sleep-deprived? If you’re not sure what to speak up for, here are some guidelines in order to get started on the right track:
Children with hearing loss have the same ability to achieve as any other child. Their capabilities are not limited by the inability to hear, they just need to learn (and hear) differently. It’s up to parents and caregivers to learn the needs of children with hearing loss and speak up for them. With access to the proper technology and early intervention, they can truly lead limitless lives.
Our annual Benefit has come and gone, but there are so many great memories that will stay with us. One of our favorite highlights occurred that morning, when our keynote speaker, Rebecca Alexander, visited the Sound Start Babies Nursery to meet our Babies!
Rebecca was born with a rare genetic disorder called Usher Syndrome Type III, causing her to simultaneously lose both her sight and hearing. She is an advocate for people with hearing and vision loss. A successful psychotherapist, author, and an extreme athlete, she’s living proof that anyone can live a limitless life.
An instant bond was clear from the moment she walked into the first classroom. She spent the morning singing songs, reading books, and really getting to know our Babies. When Rebecca’s visit was over, she offered some insight on her experience.
SSB: What expectations did you have coming into the Nursery today? What did you think it would be like meeting children this young with hearing loss?
RA: I was really excited! I know how difficult it is these days to find programs for children who have hearing loss, to really have the type of accessibility that they need to learn to the best of their ability.
SSB: How did the Sound Start Babies Program meet your expectations and how would you best describe meeting the children today?
RA: I mean, this is a place I would want to come and teach or even come and volunteer, if I would even been qualified for it! (Laughs) But it was so much fun, and I was so impressed by how well adjusted these kids are. I’ve worked in a lot of different programs and even in school systems for deaf children. I was so impressed with how socially capable these kids were.
SSB: Were there any “stand out” moments for you? What will you remember most?
RA: (Laughing) How can you forget Brian? He was so cute how he climbed up into my lap, like a little teddy bear. So that was probably the highlight of my morning.
SSB: What would you say to the parents of young children who are worried about the challenges their kids will face as they get older and go into adulthood?
RA: I totally understand parents being worried, because we can’t possibly know what our children will face. Whether they have a hearing loss, they are fully hearing or able bodied, kids learnthat they’re incapable. They don’t inherently know that they’re incapable. It’s so important for parents to manage whatever it is that they are feeling separately and not project that onto their children. Children really want to and are able to learn and gather information in so many different ways than we might initially think is possible.
SSB: What would you like to say to a child who fears hearing loss may hold them back? What would you tell them about becoming an adult?
RA: First of all, I would tell them that they’re not alone. There are so many of us out here living the best that we can in a world that is not fully equipped for people with hearing loss or vision loss. Life is about having those challenges and figuring out how to work through them. It’s not about getting over challenges; it’s about working through them. One thing has been so helpful for me: when I go anywhere, if there is something that I need to help navigate or help interact with someone, I ask for it. I want these kids to feel like whatever their needs are, it is not only acceptable, but their right to ask for it. And don’t feel like you’re burdening anyone. When you ask for what you need, you’re not asking for something that is a privilege, you’re asking for something that it is your right.
SSB: What would you like the public to understand the most, especially people who have never known anything about the world of hearing or vision loss?
RA: When we hear that a kid has a hearing loss or a disability, our first instinct is to think, oh I’m so sorry, or that’s so sad, or that’s awfulor terrible. It’s actually not terrible. It’s that pity and that idea that these kids are not going to thrive that works against them. I want people to know that these are some of brightest and most adaptable kids you will ever meet. And they are so capable. That is most important.
The world of hearing aids can seem overwhelming to navigate, especially for first time parents dealing with a new diagnosis of hearing loss. Many parents are concerned if hearing aids are right for their child. Pediatric Audiologists will help families determine which device would be most beneficial for each child to insure they receive the best access to auditory information around them.
A Newborn Hearing Screening is conducted within the first few days of life, before a baby even leaves the hospital. If the screening indicates that follow-up testing is needed, you’ll need to make an appointment to see a pediatric audiologist recommended by your doctor as soon as possible. Pediatric audiologists are best equipped to test babies, determine whether there is a hearing loss, and guide in the next steps going forward to choose the best options to suit your baby’s needs.
What types of testing does a Pediatric Audiologist do?
-Newborns and very young infants
The audiologist will conduct an ABR that is more comprehensive than the newborn screening done at the hospital. ABR stands for Auditory Brainstem Response, and measures the reaction of a child’s brain to sound stimulation. The ABR will give a picture of your child’s ability to hear.
-Older babies (about 9 months and up)
As your baby becomes more mature and can actively participate in the process, an audiologist will do follow-up testing to further define the baby’s hearing ability. This is called sound-field testing and is done in a special soundproof room with speakers. The technique used is called Conditioned Play Audiometry (CPA), which uses behavioral conditioning to teach children to respond to sounds. The child may simply look in the direction the sound is coming from and be rewarded by seeing an image of a playful cartoonish monkey, for example. Tones (like musical notes) at different volume levels will play through the speakers and result in a graph of your child’s hearing called an audiogram.
What if there is a hearing loss?
If your child has hearing loss, your audiologist and pediatrician will help decide what to do next. They may refer you to an ENT to address any medical issues that can be resolved. Therapists can provide early intervention services so you can learn more about hearing loss and how to facilitate listening, speaking, and communication development. These professionals can also help you choose the best technology and provide assistance in accessing insurance coverage.
If hearing aids are the best route, a pediatric audiologist will assist you with the fitting of hearing aids and complete the programming of these devices. They make impressions for earmolds to fit the hearing device onto the baby’s ears. Earmolds will have to be made often since tiny ears grow quickly.
The audiologist will regularly monitor hearing levels to be on the alert for changes in hearing that may result from factors like middle ear infections or progressive hearing loss. In addition, regular monitoring of the hearing aids insures that they are providing the best access to sound possible.
If surgically implanted technology called cochlear implants are the best route for your child, a pediatric audiologist will help you through the before and after surgery process that has many steps.
What happens when my child with a hearing loss goes to daycare or nursery school?
The audiologist seeks to ensure that your child has the best access to sound possible to develop listening, speaking, and communication skills. There is assistive technology available in addition to hearing aids that can make hearing easier for the child in daycare, nursery school, etc. The audiologist can evaluate these settings and make recommendations for this assistive technology.
They can also be a great source of information not only for parents, but also for daycare and school staff. All adults who have regular interactions with a child that has hearing loss should be comfortable managing the child’s listening devices and understand that these devices should be used during all the child’s waking hours for maximum benefit.
How is the audiologist certified to do this work?
New audiologists must earn a doctoral degree and hold a state license. Hundreds of hours of supervised clinical experience, passing of a national exam, post-graduate clinical experience, and continued education to maintain a current license are all requirements to practice as an audiologist. They study hearing loss, central auditory processing, and balance disorders. Most training programs allow audiologists to specialize in pediatric, geriatric, or educational audiology. They are the ideal specialists to guide you through the journey of hearing loss along with your child’s physicians.