10 myths about hearing loss

As a mother of two children with hearing loss, Chaya Raichik she was disturbed by a recent announcement she saw from Dor Yesharim about their new genetic testing panel. She wrote an article that debunked common myths. Full story

By Chaya Raichik

I was surprised to see Dor Yesharim’s announcement on COLlive for their new genetic testing panel. In bright red, it says COMMUNITY ALERT. Immediately, you start to wonder, is this a new disease? Have they discovered something horrible that is critically endangering newborns en masse?

Then you realize it’s hearing loss. Oh you think Deaf people. Yes, it is quite difficult to be deaf. All that sign language and not speaking and they’re probably homebound too and having a miserable life. And it’s Dor Yesharim, so they know what they’re talking about.

As the mother of two children with hearing loss, I keep getting questions about the panel. Let me share with you the top 10 myths about hearing loss.

Hearing loss falls on a spectrum from mild to moderate to severe to profound/deaf. Labeling all children with hearing loss as deaf is like labeling all children with vision loss as blind. Children with mild and moderate hearing loss can hear most sounds naturally, but may have trouble hearing all sounds in a conversation. Hearing aids help amplify sounds so that all speech sounds can be heard. Children with severe and profound hearing loss often receive cochlear implants. Cochlear implants replace the cochlea in the ear to give the child direct access to sound.

50 years ago, it was very rare to see three-year-olds with glasses. They were big and bulky and the children made fun of them. Nowadays, who blinks when they see a child with glasses? So too, with hearing loss. These days, there are all kinds of pretty colored hearing aids/implants for kids. They come with Bluetooth that you can stream to your phone or computer. Hearing aids for adults are almost invisible.

Almost all children with hearing loss today can be successfully amplified. Babies can receive cochlear implants as early as six months. (There are a small percentage of children who try cochlear implants and they don’t work) Sign language is fast becoming a lost art, practiced by those who grew up in earlier generations before technology advanced to today’s level. Unlike the speech therapists of yesterday who taught children to lip-read, today’s cutting-edge educational research in audiology and speech therapy teaches children to listen in noise and there are specialized reading programs. Children who are diagnosed early and amplified early can often outgrow therapy once they learn to read in the early years of elementary school. Those who are diagnosed later may also have successful outcomes but may need longer-term therapy.

Hearing loss is a wide range. Most children with hearing loss learn in mainstream schools, grow up to marry, and function fully in society without you noticing the difference. In fact, the US government/legal definition does not consider hearing loss to be a disability unless someone is profoundly deaf. Children with hearing loss are also not eligible for any respite or other additional medical services. There is an extremely small subset of children who are profoundly deaf and cannot be amplified. That is very difficult for children and families. While even for those who are amplified, it’s not a walk in the park, and the early years require a lot of therapy, but it’s comparable to children with other learning challenges who require extra help in school and may later succeed in school. life.

It is not for me to decide these important matters. But I will point out that in an era where we encourage families to have children they know may have Down syndrome, which is arguably much more difficult and requires lifelong support, it’s hard to understand the focus on hearing loss. . Especially when you consider the proliferation of other conditions among frum children that can also be genetic, such as diabetes, severe allergies, autism, ADHD, and many other things that cause life challenges but are not life-threatening when managed. It is especially curious since Dor Yesharim has been known to target severely debilitating illnesses.

The fact is that we are ALL carriers of SOMETHING. It is not possible to prevent children from being born with medical conditions. We also cannot know if they will develop anything later in life.

Although it is possible to reduce the number of children born with hearing loss through premarital testing, the fact remains that there has been an explosion of people being diagnosed with hearing loss. With the advent of ridiculously loud personal music devices, headphones and earphones, car radios, and subwoofers at concerts and weddings, the CDC estimates that one in 8 teens has hearing loss in both ears and 1 in 6 has hearing loss in both ears. one ear. This is from pre-Covid studies! Seniors have a hearing loss rate of 1 in 2! (PS: maybe wedding halls and/or musicians should start providing headphones for children as a courtesy as part of the hall package or surprise! Turn it down! Think about it: Will you turn down a shidduch but not turn it down? ?) Even without all of this, it’s very common for children to have fluid in their ears at an early age, which can also affect their hearing and understanding of speech. (And it needs to be treated ASAP!) In short, we’re working to eradicate something that will affect most people at some point in their lives.

If spouse A has recessive genetic hearing loss but spouse B does not have the same gene, then NONE of the children will have hearing loss. Again, NONE of the children will have this hearing loss, even if one parent has hearing loss. As long as the second parent does not have the same gene, NONE of the children will have this hearing loss.

I am not a Rav and I am not your Mashpia, so it is not for me to tell you what to do. One of the syndromes they look at is Usher Syndrome, which is very rare and causes profound deafness and blindness. That is definitely something that is debilitating. I’m not sure if you can ask to be tested for only the most severe ones. For someone with hearing loss, getting a premarital test can ensure that NONE of your children have hearing loss. Also, my concern is more about the stigma of telling families that hearing loss is something that needs to be eradicated, especially when it is so common and not life-threatening and often children can lead successful and happy lives. as fully functioning members of society.

Pediatricians and parents should be alert. Your child is probably fine, but if he isn’t responding to sounds, a quick checkup at the doctor’s office may provide answers. Children may have hearing problems in only one ear and should also receive amplification and therapy early on. If your child has recently been diagnosed with hearing loss, he or she is not alone! Getting help or implanting them early and starting therapy right away is crucial and can lead to successful results B ” H. If you are an adult and you or a loved one have hearing difficulties, then consider amplification! The FDA recently approved the hearing aids over the counter and now you can buy hearing aids just like buying glasses I recommend going to an audiologist first to get your “prescription” and then you can just go to a store or search online for a pair. your ear and hear the difference!(Ask a Rav about wearing and charging on Shabbat and Yom Tov, and about wearing while listening to Torah, Shofar, and Megillah!)

No, I do not work for a hearing aid company and I am not an audiologist. I’m just a mother of two children with hearing loss working to help the world understand and so you can be informed about what hearing loss really is. Thank you for reading.

If you would like to join our support group for mothers of children with hearing loss, please email: [email protected]

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