“The kid with the hearing aids”…

Way more than "the kid with the hearing aids"...

AC is way more than “the kid with the hearing aids”…  but, labels come cheap and everyone uses them.  
 
Below is another letter I had written 9 days after our son (then almost 4 yrs old)  was diagnosed… while we waited on getting his new hearing aids.  Reality hits home about labeling… stigma… hearing aids.  Things that still bother me 7 years later…  

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Written: February 10, 2001

Hi ___ =),

I need to vent a little more about AC… Something hit me like a ton of bricks last night… and I can’t quite shake it now….

We were over a LE’s house… sitting around the table, while our kids were sitting in the playroom… and from where I was sitting, I could see my son sitting in a chair, just watching the TV… and I was looking at him and thinking about how cute he is with his new haircut and all… what a great kid… you know… those loving motherly feelings…

Then I was thinking that soon, he’ll have his hearing aids… and I was just imagining him with them on… I’m actually looking forward to his reaction to them… and being able to hear everything… I’m thankful we now know and can deal with this.

But, then something just hit me… and I thought “Oh my God…. pretty soon, when people look at him… like I’m just watching him now… not me, but strangers or MOST people… the thing they are going to notice is going to be those hearing aids in his ears… ya know? and, I was just >
overwhelmed with a sadness thinking THAT’s how he is going to be labeled by so many people… at least initially if not longer… Not, “that tall boy” or “the one with the blonde wavy hair”… or “the big blue eyes”….  or “the kid who was talking about…” or did whatever.  No, he’ll be “the kid with the hearing aids”… Ya know?

I mean… not that describing people with hearing aids or glasses or whatever is a terrible thing… it was just the fact that it’s going to just change his whole life that hit me… He’s never been anything BUT what he is now to anyone…a great kid…and, while *I* KNOW that’s all he STILL is… I don’t know.. the whole idea jus upset me.  I actually started tearing up at the table and had to go to the bathroom. And, since then, I can’t get the idea out of my head.

I just don’t like the idea of it changing the way people see him… I feel like there’s this negative stereotype that goes with it or something that’s going to be forced on him. I mean, people will not know if he’s deaf or a little hard of hearing or ?? … and, I feel like he will just get labeled as… whatever….?? I don’t know.

I don’t WANT people to treat him different or think of him as any different… He’s a bright, cute, wonderful kid… and, I don’t want him thought of as “the kid with the hearing aids”.

It’s just not fair.

Welcome to reality, right? Whoever said life was fair, right? I know we all get judged and labeled and stereotyped… but, this is just not something I ever thought about for my child…

Maybe I’m just over-reacting… I’ve been pretty moody lately… and spending a good portion of yesterday on the phone dealing with insurance companies, doc offices, and the was given the run around on getting info, trying to figure out if we really have to pay $1200 of the $1800 cost for the aids didn’t help.

I found out there’s a lot of angry hard of hearing people out there trying to get insurance companies to cover hearing aids. It is pretty sad that they don’t.  They cover viagra…but, not hearing aids?? I have to apply for a program called “PHCP – Physically Handicapped Children’s Program”… which is cool that it might help cover stuff…but, I just hate thinking of my son as “handicapped” too. It’s all so new and strange…

I know I should just be thankful for so many good things and that a mild hearing problem is the WORST of my worries for my son… I know that… but, still..

Anyway…

I’m done.

Thanks for “listening”.

Love,
Deb  
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I never did, and still don’t think of my son as “handicapped” or “disabled”.  He’s not.  His hearing loss doesn’t slow him down much, if any.  He does get labeled as “the kid with the hearing aids”, though by others.  And, that does still bother me a little.  He’s so much more than that. 

He does sometimes get annoyed and frustrated with this.  He told me years ago that one of the first things kids will say to him, all kids, every time they first meet him, is “what are those things in your ears?”  or something along those lines.  I see it happen all the time when he meets new kids… or goes out into a group setting.  He handles it well…. really well… but, there’s been times he really hated it….

I can’t blame him.  I mean, as I’ve told him, and mentioned above – EVERYONE has some obstacle to face… However, as his mother, of course I wish I could fix whatever problems he has.  Of course I don’t like to see him struggle with issues like “Labeling” and “stigma”.   But, there are some things we have to face and deal with.  Some things we can’t fix.  That’s life. 

The only ones that are really jerks to him about it… are people that don’t know him (or anything about hearing loss) at all.  Anyone who takes more than a two minutes to speak to my son will quickly realize that he’s way more than “the kid with the hearing aids”.  

He’s smart.  Funny.  Silly.  Very handsome (if I don’t say so myself! :) ).  He Loves reading in general.  Plays baseball and the cello… and video games.  Loves camping and shooting and whittling… and Boy Scouts.  He’s a great big brother (usually).  He’s caring and polite.  In so many ways… your typical 11 year old boy.  In many ways much better than a typical 11 year old boy (again, if I don’t say so myself. ;) ) He just also happens to have difficulty hearing, and he like things loud… says “what?” a lot, and wears hearing aids.  it’s all part of him…  and the complete package is very, very good. 

So – I don’t care so much anymore if he’s the “kid with the hearing aids”… initially.  As long as others learn that this is not the defining part of his character.  Just an intro…  just a small part.  It’s the ones that don’t know… and don’t want to know that really bug me. 

Maybe, as SOME people DO get to know him better – and they stop noticing the HA’s and start engaging his whole person – their own “stigma” and “labeling” tendencies will dissipate…  ??

And, wouldn’t it be really cool if that branched out even more…  ??  and began forcing people to re-evaluate other things they don’t really understand or label with a negative stigma? 

Yeah.  That would be cool. 

My son. 

Changing the world for the better…

…one label at a time.

Don’t laugh.  It could happen! LOL 

I know he changed my world for the better. 

;)
Deb

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9 Responses

  1. Deb,
    I love your attitude! :)

  2. Thanks! I love your blog and writing as well. Thanks for stopping by.
    =)
    Deb

  3. Deb, I found your blog while searching mostly unsuccessfully for info on a mild/moderate hearing loss. My son, W turned 3 on Sunday. Little does he know, he’ll be getting hearing aids as a delayed birthday present! Your blog has gotten me through the last 2 weeks since we were told he needed HA. Your July 11th post hits home especially. It’s like I wrote it. Thank you, and thank AC. He’s a brave kid to be on your blog helping families of the newly-diagnosed!

  4. mzwizland –
    Thanks for your comments… and I’m so glad if anything you find her is helpful or comforting. I’m guessing your boy takes it all in stride… mine did… I think it’s often us (the parents) that struggle with adjusting more. You will be fine. He is fine. And, just learn as much as you can so you can be his best advocate until he’s ready to be his own.
    =)
    Deb

  5. Deb,
    I have been going through two years of hearing tests and at this point the audiologist seems to think that my son has mild to moderate loss. He is 2years 9months. I am struggling with whether or not hearing aids will help him. His language, though delayed, has improved since he had ear tubes placed in his ears in February. I read your letter and as a teacher I struggle with the stigma of hearing aids. I also wonder if my son will wear them. I know he hears me. He responds, reacts and has an incredible vocabulary. Anyone I know who has a child with mild-moderate loss had hearing aids for their child as an infant. No one can comment on the differences of before and after. Can you help me? How did AC’s (and your) life change. The emotions are overwhelming and any feedback you can give me would help.

  6. kllinc
    My son was diagnosed with mild to moderate hearing loss at 2 years old. His speech-language skills were average to above average at that time and continue to be now at 8 years old. He has been wearing hearing aids since he was 2years 2 months. I can say that I struggled with that decision as you are now (he responds well without hearing aids, will he wear them, what will the social implications be for him…). He accepted his hearing aids from the start and they have become a part of him. I did not notice a difference in his ability to hear with hearing aids initially but as time passed demands on language became greater his hearing loss became more apparent in certain situations. His hearing did not change but the demands on his auditory system did. He depends upon his hearing aids at school and subsequently does very well in school. Socially, he has not had any difficulty. Some children ask questions and I have given him the information/skills he needs to answer those questions for himself. He has friends and is socially accepted. I completely understand your feelings of grief and wanting to do the right thing but not being sure what the right thing is. My question to you is if you were told your child had a mild-moderate visual deficit would you get him glasses? Our children deserve to be given the opportunity to hear all the world has to offer. It’s difficult but get a second opinion and make the best decision you can for your child and family. Good luck to you.

  7. killinc,

    Hello =), and welcome to my little blog. I’m glad you found it… and I’m sorry for my delay in getting back to you. I came back from vacation and was glad to see your post, and was even more glad to see that you had a response from rmk. I think rmk made very good points that I agree with.

    We never knew AC had a hearing loss until he was almost 4 – and after that he promptly got his first hearing aids. Once he was diagnosed with a mild-moderate hearing loss – they just told us he needed them… and, it wasn’t really a debate. He was having some minor speech issues at the time (that was how we found out) – so, as far as I was concerned he needed the hearing aids, and so, like it or not – they weren’t an option. He needed them. That’s pretty much how I still feel.

    Before he was diagnosed – we were clueless that he needed them. He was advanced in his vocabulary too… and, hit all his milestones early. So, I guess you could argue that he didn’t really need them before that. However, once we DID know about his hearing loss – and looked back with that 20/20 hindsight – there were so many signs that he was missing things… and, I felt terrible that we didn’t know earlier. I wish we had. And, if we had, we would have gotten him the hearing aids a lot earlier on. For the simple reason that rmk mentioned – “”Our children deserve to be given the opportunity to hear all the world has to offer.”

    I mentioned in a different post of mine here (https://hearmehearmenot.wordpress.com/2010/05/16/mothers-guilt/ ) the following:

    “Learning that he had a hearing loss was difficult – mostly because there is so much we didn’t understand or know…. but there was a lot to it. It was overwhelming. The not knowing for so long definitely had an impact too. I think, for me, what made me feel the worst, was that we had scolded him for “not listening” when he couldn’t help it… but, even worse was that I worried about what had he missed that we never knew he missed…? Like how many times had I whispered “I love you” to him when he was a baby, that he never heard??? That killed me. I talked about this in a post called “Silent Whispers…“. I also mentioned how parents feel guilty and can over compensate with too much “positive coping” in a post called, “Acknowledging the needs of children with mild hearing loss…“ “

    I think it was harder for my husband and I to accept that AC needed hearing aids at first than it was for AC. AC took it all in stride… and, didn’t seem to mind wearing the hearing aids when he first got them. We called them his “Spiderman Ears”… and he actually thought they were pretty cool. Once he tried them out, he wanted to wear them. And, why wouldn’t he? He could finally hear things he never heard before. Whispers. Secrets. Birds chirping, Crickets. Sounds in movies or his favorite cartoons that he never heard before. He didn’t have to struggle to understand what we were saying so much… or to hear the TV… or other important things like his friends… his teachers…. So, why WOULDN’T he want to wear them?

    And, really, why wouldn’t we WANT him to wear them? We don’t want him to miss out on anything – or have to struggle any more than necessary. Especially not just because we are worried about what other people might think. It’s sad that there is still stigma attached to hearing aids… or hearing loss. It’s sad, and it’s wrong… and, it needs to be challenged and corrected. Don’t let it be a factor in meeting your son’s needs – whatever they may be.

    Now, maybe your son really doesn’t need hear aids. Ever child is different. Every hearing loss is different. Only you… hopefully with a lot of input from a knowledgeable doctor, can make that decision.

    What level loss does your son have? According to studies, and the chart at http://www.phonicear.ca/resourcefiles/DegreeOfLongTermHearingLossToPsychosocialImpactAndEducationalNeeds.PDF – even a MILD Hearing loss – 26-40 dB can cause a child to:

    “miss 25-40% of speech signal. The degree of difficulty experienced in school will depend upon the noise level in classroom, distance from teacher and the configuration of the hearing loss. Without amplification the child with 35-40 dB loss may miss at least 50% of class discussions, especially when voices are faint or speaker is not in line of vision. Will miss consonants, especially when a high frequency hearing loss is present. Barriers beginning to build with negative impact on self esteem as child is accused of “hearing when he or she wants to”, “daydreaming”, or “not paying attention”. Child begins to lose ability for selective hearing, and has increasing difficulty suppressing background noise which makes the learning environment stressful. Child is more fatigued than classmates due to listening effort needed. Will benefit from a hearing aid and use of a personal FM or soundfield FM system in the classroom. “

    Other articles / resources I think you might find helpful:

    http://www.familysupportconnection.org/pdf/HH%20of%20Hearing%20Brochure.pdf

    http://www.phonicear.ca/resourcefiles/DegreeOfLongTermHearingLossToPsychosocialImpactAndEducationalNeeds.PDF

    I hope this helps… Please let me know how you’re doing, and any other questions you might have… we can learn from each other.

    =)
    Deb

  8. My son received his hearing aids about a year and a half ago. He is now 7 years old. I remember when I had to explain to him what all the testing was for. I told him he would be getting hearing aids and that they were like transformers for his ears so that he could hear secrets. He liked the idea of having transformers and when his friends asked what was in his ears he let them know. They would look at me and I would explain that just like one of his friends who wears glasses to help him see better my son wears hearing aids to help him hear better. His friends took the information matter of factly and went back to playing. My son has just had new molds made for his hearing aids and he chose the color red because just like glasses it is all about style. Other than making sure in certain circumstances(water balloons, swimming and rain) that his hearing aids are out and in a safe place, his life is as it has always been and now with more clarity.

  9. Amy – thank you for sharing that. I am sorry it took me so long to reply. Your post reminds me very much of when AC first got his hearing aids. He was 4, and at that time, he was all into Spiderman… and he thought his hearing aids gave him super “spider-senses”/hearing… and we always explained them to his friends very matter-of-factually, like you did. (“Some kids need glasses to help them see. Some kids need hearing aids to help them hear”.) He use to get red and blue ear molds – to be like Spider man. Later, he had camouflage ones… Eventually, he wanted just the clear ones… which was fine too!

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