What I’d Like For You To Know: Mom of a Hearing Impaired Child

WhatidlikeWelcome to another edition of the What I’d Like For You To Know series.  If you’re new here, the idea behind this series to is to ask women to share something about a specific life challenge or circumstance, addressing some of the misconceptions and (most importantly) telling us all how we can reach out better.

Today’s guest is Julie from Octamom–she’s the mother of eight, and one of her daughters is hearing impaired.  (You can read more specifics about her diagnosis here.) 

Note: To keep things simple, Julie writes about her kids using their birth order number as a nickname.  "4 of 8" is her daughter.

Here is their story.

We sat, 4 of 8 on my lap, in a hard plastic chair in the confining little room.  I looked through the thick glass wall I faced, trying to discern the expression of the audiologist on the other side.  Tweets, beeps, high squeaks and low rumbles issued from speakers mounted in the corners at unpredictable intervals.

And 4 of 8 seemed oblivious to it.

I was about to be told that my child had a severe hearing loss.

Our path to this little room had begun routinely enough.  4 of 8’s language at the age of 2 ½ was not in keeping with the speech development I had experienced with her older siblings.  A trip to the pediatrician’s office yielded reassurances that my expectations were set too high, that she seemed healthy, that her ears were clear and her motor skills at age level.  At my insistence, the pediatrician decided to play along and scheduled us for a round of speech and development evaluations, with a routine side trip to the audiologist.  It never dawned on me she might not be hearing us.

Hearing loss is the most common birth defect in the U.S., affecting 3 babies out of 1,000.  Add to that number the population of children who go on to develop conductive losses (chronic ear infections, illness, etc.) and that number soars to 15% of school age children.  Obviously not all children have enough loss to warrant intervention through hearing aids or cochlear implants, but a steady population of children with hearing issues grows each year in this country.

One of the reasons for my complete shock at 4 of 8’s diagnosis was my misconception that hearing impaired means completely deaf.  Actually, 95% of all hearing impaired individuals have some level of residual usable hearing.  4 of 8 would react to the lawn mower, to a loud noise, to a telephone.  Her greatest level of loss is in the high frequency range, the levels where most human speech takes place, hence her lack of language development.

I was also unaware that the challenges of hearing loss are not just that sound is quieter, but that sound can be morphed and muffled.  4 of 8 perceives our speech as sounding something like the grown-ups in the Charlie Brown cartoons, a soft, warbling cadence in which vowel sounds are the easiest to discern and non-percussive consonants the most difficult. 

4 of 8 was just over 32 months old when she was diagnosed.  We entered a whole new world of decisions for her:  what type of hearing aids, what type of practical  approach toward her education, what philosophical approach to our parenting.  We learned that most insurance companies do not cover the cost of hearing aids, which usually run in the price range of $4000 to $8000.  Yes, you read that right; insurance does not cover hearing aids.  Viagra, yes.  Hearing aids, no.  We were hit with so much information, so many decisions and so many questions.

We also entered a political mine field of which we had been completely unaware.  To us, it seemed obvious that if there were technology and therapy available to help 4 of 8 make the most of her residual hearing, to help her learn to listen and talk, then, just as we would provide a kid with glasses to help them read the blackboard, so we would provide 4 of 8 with these resources.  But part of the hearing impaired community believes vigilantly that individuals with hearing loss comprise their own unique group, noted with the moniker of Deaf with a capital D,  American Sign Language as their native tongue. We have received criticism for choosing to use technology and Auditory Verbal Therapy for 4 of 8, being told that we are keeping 4 of 8 from experiencing her own ‘kind’.  In the midst of her diagnosis, to so passionately desire to give her every advantage and opportunity, those opinions were wrenching.  I do not pretend that I know what approach is right for every family.  But now, over seven years later, we know that we were guided to make the right decision for 4 of 8, choosing to raise her as a hearing child, with challenges, yes, but with amazing opportunities to leverage technology and therapy.  If 4 of 8 would like to learn American Sign Language (ASL), we would be happy to help her achieve that goal.  But as she has said to me, “I like to talk.”

I am often asked if we have considered a cochlear implant for 4 of 8, the bionic-esque device that taps the auditory nerve and delivers sound frequency directly to the brain.  The FDA has strict regulations on who can be considered a cochlear implant candidate and 4 of 8 at this time falls just below their thresholds.  However, if a time comes when she could be considered for the surgery, we would be delighted.  Cochlear implants, with appropriate therapy, can be considered modern magic.  We have seen incredible results amongst several of 4 of 8’s peers.

But perhaps more than the statistics and strategies, there is one truth I want you to know, a paradigm shift that I hope brings a fresh perspective.

Through it all, an incredible thing has happened.  This hearing loss has come to not feel like a ‘loss’ at all, rather, an astonishing experience for us as a family, an opportunity to meet other incredible families, to interact with a community of therapists who coach and guide and love, to have a view into a window of what I’ve called one of humanity’s most common miracles, the miracle of language.  It has shifted from ‘loss’ to ‘gift’–astounding.  And it is so intrinsic a part of who 4 of 8 is, how it has shaped her, how she experiences her world, that is has become a beloved part of who she is.  And therefore, of who I am.

To read more of Julie’s posts, visit her blog, Octamom.  Additionally, click here to see a photo-journalistic walk through 4 of 8’s experiences, and click here for more information about their therapy group, Hearts For Hearing.

56 thoughts on “What I’d Like For You To Know: Mom of a Hearing Impaired Child

  1. Elizabeth says:

    This post was touching to read because my grandfather is dealing with significant hearing loss. He may be 88, but the impact this slow yet sudden loss has taken on him has been astounding. Even more astounding is the tenacity with which he’s faced the challenge and learned new ways of communicating. Language is a miracle and 4 of 8 is a blessing.

  2. Charlotte says:

    My niece got cochlear implants last spring. My sister has been criticized also and has some friends who absolutely refuse to talk to her anymore. But to watch my niece begin to speak is a miracle.

  3. Kathy says:

    Our 9 year old son was born severely hearing impaired. Where your daughter can hear the doorbell, a jet would have to fly right by him before he could hear it. That was then – his threshhold allowed him to be a candidate for a cochlear implant. The story leading up to that implant is rich and heart wrenching, one I have often thought about sharing. You have given me more impetus to do so with your post. However, the five years post implant is even more rich, heart wrenching, painful and beautiful. Language acquisition is a long arduous task when initiated later in life. God is so merciful. I have found when I see no break through in my son’s progress, when my nights are dark as I cry out to our Lord for help and direction and question every decision we have made (i.e.to help him live in the hearing world not the signed world) – answers come and progress is made, albeit slowly. I can relate to your struggles medically, politically and socially with your hearing impaired daughter. I cried when I read your story, understanding your struggles, pain, and JOY!

  4. Mel says:

    Thanks for sharing while we don’t deal with hearing loss, two of my four have special needs. It is always wonderful to read how other families put things in perspective with regards to special needs.

  5. Mom24@4evermom says:

    It is absolutely inhumane that insurance companies do not cover hearing aids. Awful. I hope someday she can receive an implant. Again, I don’t understand withholding something that could be so beneficial. Thanks for the information. Very illuminating. For what it’s worth, in my opinion, I think you made the right call. My son has a good friend who’s hearing impaired and he interacts and socializes with all the kids just like any other kid. If he did not speak, if his form of language was ASL, he would be very isolated.

  6. Mommy2Twinkies--Deb says:

    I didn’t know that about insurance companies not covering hearing aids. Well, I did know it for seniors, but I guess I always thought that they’d take care of the little ones. Boy they make me so mad sometimes, we’ve had some issues with my hubby’s medicine. This is a great post. Hugs.

  7. Amy in West TX says:

    My youngest, now 13, was not talking by the age of 4. She was dx’d with a bilateral hearing loss of 65db. Surgery was an option for part of her loss. Post-surgery, she has a 25db loss bilaterally. In addition to the loss, she has a central auditory processing disorder, which means that what she does her gets scrambled between the ears and the brain. Background noise is awful for her, she can’t pick words out. She has Auditory Trainers and uses them as needed. $2500, not covered by insurance, nor was any of her intensive speech therapy that was done privately (without the public school therapy). Now for the gift part. She is a singer, a coloratura soprano with perfect pitch. She can sing anything, learns best by having things sung to her. She can’t hear worth a darn at times, but she can always sing! There are silver linings in every disability!

  8. Starr says:

    I’m a speech pathologist who is often in the position of encouraging parents to get their language delayed toddler a hearing test. I can’t tell you how often they say, “She’s not deaf! I know she can hear! She startles when I turn on the vacuum!” Leaving me to try my best to gently explain that hearing impaired does not mean completely deaf. Thanks for sharing your story.

  9. Carol says:

    Such an informative post!
    We entered the world of the hearing impaired when my daughter became best friends with a girl, 12 years ago, who has had a cochlear implant for the past 7 years. We had to learn to sign in order to communicate with the child. Her mother educated me along the way and the girls are still best friends.
    What I find sad is how many families of hearing impaired kids refuse to learn to communicate with them.
    I appreciate you taking the time to share this information with us.

  10. Jenni says:

    I love the “four of eight” teminology. We use it occasionally around here, too (big star trek fans).
    Thank you for the perspective, Octamom, and the great information. I learn so much from these Thursday posts, Shannon!

  11. A&EMom says:

    We’re one of those families with a 19mo old who mostly grunts and squeals. She seems to understand everything we say – just doesn’t speak the language. We’ve called in the experts and they think it’s fluid in her middle ear (tympanogram was flat). She has her first hearing test in Dec.
    Thank you for the bounty of information and reassurance.

  12. katie says:

    My husband is an audiologist and his passion for helping people improve their hearing and language has rubbed off on me. I was so moved by your story.
    Thanks so much for writing this and saying such nice things about audiologists!
    Now if we can only get some legistlation moving to help insurance coverage for their services!

  13. Philippa says:

    Thanks for this post. We have a hearing impaired 8yo and all these years later we remember the diagnosis as if it were yesterday. From that moment we had help and funding for everything. We are in the UK and the NHS funds the appointments and the aids. My son was picked up at the screening done at 8 months. Now every newborn is screened. I share this to encourage those people campaigning for their insurance companies to cover this. I consider it a basic right in a civilised world to have access to these services. Early intervention is key! We had help from day one and it made all the difference for him and also for us as a family.
    @ Starr – I was in the same denial and it was health professionals like yourself who made the journey so much easier. Thank you for what you do!

  14. Mozi Esme's Mommy says:

    This is quite interesting! I have severe hearing loss myself, but didn’t get tested and treatment until I was 4. I hated “being different” and refused to learn sign language as a child, though I wished I knew it now so I could teach my baby. But for me, mainstreaming was what I fought for. I did things like memorize all my spelling words so on spelling tests I could more easily lip-read the words to spell. It made me angry when concerned relatives suggested ASL, because it meant that my efforts weren’t good enough.
    So I managed to graduate from high school by the time I was 15 and do quite well for myself in the normal world, thank you very much. I regret not knowing another language well, but that’s all.
    I realize everyone is different. I just wish people wouldn’t pressure others to their way of thinking.
    Oh, and I feel the pain of hearing aids etc not being covered by insurance. I don’t get it…

  15. Britt says:

    As always you have managed to chronicle a portion of your families history in such a beautiful way, and used this challenge as a learning opportunity and a blessing.
    Thank you for sharing, Julie! er, I mean .. Octamom :o)

  16. Amy says:

    I enjoyed this post today, having a hearing impaired child (age 4) myself. I loved reading about your and 4 of 8’s experience with hearing loss.
    It has been challenging for us at times (the cost of hearing aids) but has been a unique blessing in our lives.
    What has been most shocking to us is the divisive and very political deaf community. Either you sign or you don’t. I wish both sides of this very controversial issue understood that we are all the same in the end. Trying to do what we think is BEST for our children.
    It’s good to know there are others out there experiencing, even if in a different way, some of the same struggles, challenges and joys that we are.
    Thanks again for the post.

  17. Linda Sue says:

    Wonderful post to share, Shannon, because so many will experience dealing with hearing loss – if not a child then as our population ages (and I’m aged!). Hooray for Octamom and knowing each family must do what is best for their child. We have a profoundly deaf cousin who lives very much in his own world of other Deaf. We work with friends who are missionaries to the Deaf in central America helping the Deaf to communicate – the hardest are orphans or abandoned kids who don’t even know their name because no one taught them. Thank you for making some noise about dealing with hearing loss – bless each of you making those decisions

  18. Runningamuck says:

    Thank you so much for sharing Julie. I’ve worked with the Deaf community for many years and I can only imagine your struggle between the two “worlds”. Your post was very insightful for those of us who have no idea (I had NO idea that insurance doesn’t cover hearing aids. That’s about the most ridiculous thing I’ve ever heard… and yet it doesn’t surprise me). You are so right, every family must decide for itself and adapt as their situation changes or as their child matures. Hats off to you!

  19. AF says:

    Had a childhood friend who contracted spinal meningitis and had hearing loss as a side effect. It was really inspiring to see her family rally around her. Cochlear was a very new technology when she was first diagnosed…late 80s. She was in the second grade and did keep some speech. She’s now in her 20s and in college!

  20. Happy Geek says:

    Super post.
    I was diagnosed with my loss at age 5. Back then there was not a lot of debate how I would be raised (ASL or not) and I am so sorry that people are questioning your judgement.
    When i think of all the disabilities I could have, I am so blessed to have a hearing loss. My aids were covered by insurance (move to canada :)) until I was 18 and now I shop for aids like most people shop for cars.
    I feel no different than those around me, just a bit more clueless in large crowds.
    This post just made me smile.

  21. Ewokgirl says:

    One of my dearest friends is hearing impaired. I was blown away when I learned the cost of his hearing aids. It’s astounding that insurance doesn’t cover this. He’s over 40, and still able to hear with them, although it worsens over time. And his wife envies his ability to “take out his ears” when there’s too much noise or he wants to sleep!
    Thanks for sharing about raising a child with auditory problems. It’s always interesting to read other people’s perspectives.

  22. karen says:

    Our oldest is hearing impaired and finally qualified for a cochlear implant a couple of years ago. It has been great for her, yet she continues to use all her other communication techniques of sign language and lip reading in addition to hearing and speaking. All her classmates have learned some sign language through her and her interpreters, and she is adored by all her teachers.
    Your last paragraph really struck a cord with me – while no parent would wish an impairment on their child, it *is* amazing to see and hear the world through her eyes and ears.

  23. Janna says:

    My mom has been partially (and at one point completely) deaf for most of my 38 years. Initially, her problem was corrected by surgery followed by almost 30 years with various hearing aids. I say this to say that being around people who cannot hear (or cannot hear well) has been a lifelong experience.
    When I was in school, I had two completely deaf kids (and three completely blind kids, but that’s another post) in my class. I don’t know how the kids felt themselves, but to the rest of us, they were no different. It was great growing up with such diversity.
    I hope that your child is blessed with friends that will see her for who she is, not what she cannot “do”. She obviously has a family that sees her that way!

  24. Ann says:

    I myself deal with hearing loss. Due to surgical complications, I lost all hearing in my right ear. You just don’t realize how much you miss out on when you can’t hear. I was implanted with a BAHA(bone anchored hearing aid). I couldn’t stand all the noises I was suddenly bombarded with. I think the worst thing about hearing loss is that no one can tell by looking at you that anything is wrong. They just think you are ignoring them or whatever. I am not ignoring you, I
    can’t hear you!
    Thanks for sharing your daughter’s story!

  25. Melissa says:

    Thanks for the personal story. I had the great fortune to take 2 quarters of ASL in college, and there was a lot of Deaf culture studies tied in. I never knew the strong camaraderie among the group, and the huge cultural war surrounding people who are Hard of Hearing (the Deaf community’s name for them). They’ll even call someone Deaf if they participate in the culture but have residual hearing. And they’ll call someone Hard of Hearing, even if they are totally deaf but do not participate in the Deaf community. It’s very interesting.
    I’m glad you feel like you’ve made the right decision, and that your daughter is thriving. There was a girl in my ASL class in very similar situation. She had always been in mainstream school, had hearing aids and great speech. Then, she also got to learn about the Deaf culture, and she took to it faster than any of us. Maybe your daughter will someday get the best of both worlds too!

  26. Sabrina says:

    What a wonderful post! I have tears. My 5yo son has high frequency hearing loss and is aided. We discovered his loss at 9 months but he wasn’t aided until he was 3 years old. What a journey for all of us. What a blessing to read this post. Thank you so much!

  27. Mina says:

    Beautiful as always, Octamom! Our children are all blessings, no matter what strengths or trials they are blessed with. Thank you for again communicating that so very eloquently.

  28. Dana~Are We There Yet? says:

    Two of our 5 children are hearing impaired. It really is a different path, but a lovely one, The folks at Hearts for Hearing have been a lifeline for us over the years. Can’t say enough good stuff about them. Wonderful post, Octamom!

  29. Heather says:

    You never cease to amaze me with your perspective, Octamom. What a lovely post.
    I love the analogy of people talking sounding like the teacher on Charlie Brown. I bet it does sound like that!

  30. Ash says:

    Thanks for sharing this, I am actually hearing impaired myself. I have been wearing hearing aids since I was two years old and I am a senior in college. This was encouraging to read!

  31. angie says:

    I remember the first time I read about 4 of 8. Octamom really does have a way with words that makes it totally interesting, comprehendable, and touching.

  32. Bonnie says:

    Something like this makes us realize how often we take things like hearing for granted, or makes us realize just how complex speaking, listening, and learning really is. Great post.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s