What I Wish You Knew About My Hearing Impaired Child

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September is Deaf and Hearing Impaired Awareness month in the U.S. It may surprise you to find out that nearly 20 percent of people in the United States are in some way hard of hearing but there still exists a negative stigma of hearing impairedness and many misconceptions.

Here are some things I wish you knew about my hearing impaired son…

I wish you knew that while every birth of a new baby brings excitement and challenges those are different if your child is hearing impaired.

You first go through many tests for hearing to determine their level of loss. My son was born with a type of loss known as unilateral conductive hearing loss. This means that it is only one side and that the loss occurs in the middle to outer ear. His left ear hears perfectly and while he does have a cochlear nerve, his right ear has progressively gotten worse and he now has what is deemed a profound loss.

He has a condition known as Microtia-Atresia, which means that his right ear did not fully form in utero and he does not have an ear canal or ear drum. In past decades he wouldn’t be aided because for a long time doctors believed if one ear worked, you were fine. It was only in the last twenty years or so that research determined that you in fact do need both ears because they process different parts of sound.

I wish you knew that I’d love for you to ask about his hearing aid rather than make an assumption.

He wears an Oticon Ponto Bone Anchored Hearing Aid and he has had it since he was two months old. When he is older he will have a surgery that creates an abutment for it to attach to his skull but until then he wears it on a band. When he was a baby people always assumed it was a headband and that he was a girl. But no I did not put my little girl in a shirt that says boys rule or handsome. He has finally reached an age where other children ask and he has no problem telling them what it is and that he needs it to hear. No hearing aid makes his ear work, rather they enhance and amplify the sound and the waves so that his brain can process them.

I wish you knew that he is not deaf but does need his hearing aid.

Many completely deaf individuals sign and are a part of a distinct deaf culture. While we have made many connections with individuals and have immense respect for their culture we do not consider ourselves a part of it. He signed as an infant but was vocal at a very young age and we pursued that route. However, regardless of how vocal he is, that doesn’t mean the doctors are wrong and that he can hear better than they think. Yes, I literally had a woman who worked at his daycare when he was an infant tell me those exact words. See my above statement about the research done about unilateral loss needing to be aided, which is exactly what I sent her after.

I wish you knew that it will never hold him back.

He is the most voracious and determined three year old you’ll ever meet. He is very intelligent, kindhearted, and aware of everything. I know teachers who see hearing impaired students as a challenge but the reality is that it is not their brains that are impaired, just their ears. I sincerely hope one day we are able to think of hearing deficiencies the same way we do visual deficiencies. My son may have an ear that doesn’t work the same as yours or mine but his heart works better than anyone’s I know!

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The first day he got his hearing aid and could finally hear! He was in a state of shock for quite a while.

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My son got a reconstructed ear three months ago. Here he is with his new ear and hearing aid heading to school.

 

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7 Responses to What I Wish You Knew About My Hearing Impaired Child

  1. Lisa September 22, 2016 at 9:08 am #

    YES! To all of this! My daughter was born with unilateral loss and head an implant and a Ponto and uses FM at school, which people still think she doesn’t need because she does well at school, sports, etc! Her aid broke this week and the first day at school without is she came home and put herself to bed at 5pm! Slept all night. Hearing (especially without an aid) takes a lot of work for our kids!!

  2. Jaime Kilby September 22, 2016 at 9:48 am #

    I shared your post because this is us too!!!!! Did Lewin do his ear? Our Lucas is 2 1/2, wonderful, silly, adorable and verbal. Thank you for writing this.

  3. Regan September 22, 2016 at 11:56 am #

    dear Kim- I love this article! We are from Canada and I also have a 3 year old ( almost 4) with hearing loss. She has bilateral atresia ( no microtia) and I really found this therapeutic to read! Thank you!

  4. Suzy September 22, 2016 at 2:33 pm #

    Deaf and Hard of Hearing,
    Please connect with someone from the Deaf and HOH community. I have no issue with you using a hearing device for your son, mine uses a BAHA off and on but signs because he is losing his hearing and is non verbal.

  5. Kevynn September 22, 2016 at 3:33 pm #

    My son is 20 mos old and also has right sided microtia-atresia. He is also aided (only we are cochlear users). Love your article and agree so much – especially with the part where you say you would just prefer people ask about the device instead of staring or making assumptions. I always appreciate the opportunity to help educate someone about his device. Keep on keepin on!

  6. Cindy September 22, 2016 at 7:50 pm #

    Good for you! Well informed parents do know best! We have pursued LSL (listening and spoken language) exclusiviely for our two deaf daughters. I call them deaf ( little d) or hearing impaired. It really makes no difference. My oldest has a profound bilateral sensornueral loss and my youngest a mild- moderate bilateral loss as well. One has Cochlears, the other HA’s, they are just like any other typical hearing children. My oldest is above her grade reading level and my youngest is also bright. Early intervention and access to sound at an early age are the KEY to teaching deaf children to listen and speak!! The ears are the doorway to the brain, after all!! If you are ever looking to move to San Antonio, check out Sunshine Cottage school for deaf children, it is a fabulous community of listening and spoken language, only, kids.

  7. Alaina September 25, 2016 at 8:59 am #

    Hi! My son has Microtia as well, he was born Aug of 2013.
    I am interested in hearing about your process of ear reconstruction and surgery. I feel like I have no one to rely on for info and moving forward but 1 doctor and I just know my son has more options and opportunities than what his otologist is giving me because I have done some research myself. Would love to exchange emails with you.

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