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.
What many people don’t know is that there are several different types of hearing loss. Each type has its own best practices for treatment, but even within these categories each case is highly individualized. Once a diagnosis is reached, patients work with their doctor to find the best treatment plan for that specific case.
If you or your child is new to the world of hearing loss, the information can be overwhelming. Doctors and audiologists are best suited to guide you through the process, but arming yourself with some basic knowledge can help make the whole experience easier.
Common Types of Hearing Loss
Sensorineural Hearing Loss (Inner Ear): This is the most common type of hearing loss and is likely permanent. It occurs when there is damage to the tiny hair cells of the inner ear. Family history of hearing loss, genetic disorders, and anatomical abnormalities are some of the possible causes. Families can work closely with their team of professionals to help determine what the cause of the loss might be, although sometimes the etiology remains unknown.
Conductive Hearing Loss (Middle and Outer Ear): Conductive hearing loss occurs when the outer or middle ear is not functioning properly. Many young children suffer from conductive hearing loss during their toddler years because at this young age, the eustachian tube that lies in the middle ear is more flat than angled as seen in an older child. This makes it difficult for fluid to drain from the middle ear when little ones are sick. Some known causes are fluid, frequent ear infections, and swimmer’s ear. Your pediatrician or ENT can often manage these conditions. However, some children have outer or middle ear differences such as microtia (a very small external ear), atresia (no external, middle ear, or opening to the middle ear), or abnormalities within the tiny bones in the middle ear system. These abnormalities can cause conductive hearing loss to be permanent.
Mixed Hearing Loss: Mixed hearing loss is a combination of both a sensorineural and conductive hearing loss. The middle ear and the inner ear both contribute to the diagnosis.
Less Common Types of Hearing Loss
Auditory Neuropathy: This occurs when sound travels through the inner ear normally, but the transmission of sound to the brain is impaired. Individuals with auditory neuropathy may have fair to poor ability in discriminating speech. This type of hearing loss needs to be monitored closely as the hearing will fluctuate (as the degree of hearing loss varies), and hearing aid programming needs to be adjusted accordingly.
Neural Hearing Loss: This rare type of hearing loss results from malformation or damage to the auditory nerve that connects the cochlea to the brain and is typically profound and permanent. Traditional hearing aids or cochlear implants do not provide benefit, because the auditory nerve cannot transmit information to the brain. An auditory brainstem implant may be recommended.
Treatment Options: Children diagnosed with hearing loss should be evaluated by an audiologist and specific recommendations such as hearing aids, bone conduction hearing aids, and cochlear implants will be recommended depending on the factors of their individual case. Children with conductive hearing loss may have options such as PE tubes if hearing loss is a result of chronic fluid that is medically managed by a physician. Your doctor and audiologist will help guide you through treatment after a successful plan is determined.