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gingertn

Need Advice

17 years ago

Bradley has high frequency hearing loss from nerve damage due to one of the chemo drugs he was given - it's quite normal and he's had hearing evaluations every 6 months since then. They always tell us he's borderline for hearing aid recommendation. He has only 2 out of 8 normal range frequencies, one that is barely out, one a little farther and then four that are way out (the high frequencies, 3000-8000). We keep putting hearing aides off b/c neither of us really want him to have them and we feel that he speaks quite well and seems to hear well enough. However, if he goes to school, they tell us he will have trouble hearing in the classroom, playing ball etc due to background noise. Apparently, hearing aids cost around 3 grand (excluded by insurance) and there is the free hearing aid program going on right now that a friend of mine told me about, but I'll have to overnight the paperwork, deadline is Wed. I want to go ahead and get them and do a trial. Larry does not want to do it. Period. He thinks he'll do fine w/o them. But I think I'm going to veto and do it anyway, but I'm really torn up about it, b/c Larry says I'm giving him a whole lot of problems by getting them (kids will make fun of him etc.)

I don't know what to do. I hate to take hearing aids and then not use them - someone else could benefit from them. I need to be there at 3 today to get ear molds made. Argh. Really upset and frustrated

Comments (19)

  • 17 years ago

    Stick some silly putty in Larrys ears and make him wear that for about a day and see what all he would be missing out on.....How can he deprive his son of hearing everything? I think kids don't tease kids who have special needs like they used to it is more understood and talked about these days then when I was growing up and also I know that at my kids school even the special needs kids were treated with respect and included in everything even if it meant other kids pushing them to base in wheelchairs etc etc etc.....I would do it.....JMO Stacy

  • 17 years ago

    I agree with Stacy. Not allowing your son to hear properly because of vanity would be a shame. It would have a more negative impact on his life to fail in school due to not being able to hear than to be teased a few times because of hearing aids. You would be possibly saving yourself $3000, so I would go ahead and do it!

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  • 17 years ago

    Another point they make the hear aides so small anymore that they are almost not even noticable.....please please go for it....Stacy

  • 17 years ago

    I'm mostly a lurker , but I wanted to post to your bulletin with my opinion/insight...

    I lost my hearing in one ear a little over a year ago. I've seen various docs and ENT (Ear Nose & Throat) specialists and they all claim it's sudden ear loss due to me having the flu and a really high fever one night. I literally woke up one morning and couldn't hear out of my ear, my equilibrium was totally off whack and i couldn't stand up alone or walk due to the room feeling like it was constantly spinning. They hoped that I'd slowly regain my hearing, but it's been over a year and it hasn't come back and the chances in me getting it back are slim. So I figured I'd post and give you my opinion as to what it feels like to not be able to hear. It is very frustrating, it's hard to imagine what a difference not hearing in one ear makes. I have a difficult time hearing in large or crowded spaces and have to turn my head and good ear in the direction of the speaker in order to hear. I cant tell where sounds come from, so if one of my kids is calling me in the house i have to go find them or have them call out where they are. And it's difficult to hear over background noise or other people talking in the background. The docs said that in my case a hearing aid is pointless since i cant hear at all. I think that your child would benefit from a hearing aid if he has some hearing left. In his case it would be beneficial to him and as far as other kids making fun of him, they make hearing aids so small nowadays that it might be hard to even notice he has one on. IMO - I think that you should really consider getting him the hearing aid.

  • 17 years ago

    I will tell you that I have a high frequency loss and the situations that you describe are where I have trouble. As long as you are close by and looking at me, I can hear you...but in a car with road noise or in a gathering of any kind etc etc I can't hear and it isolates you terribly. No matter where i sit at the table in a restaurant, I cannot hear if there is any kind of noise or just more than one person talking. I can't hear my granddaughters when they call on the phone etc etc.

    Do him a big favor....Get the hearing aids...

  • 17 years ago

    have you contacted his dist school yet? when dgd was checked the day she was born, and found to have 30% loss, they were visiting dd at home within days. (and still are)

    unknown to us, her mother (dd2) had hearing loss from repeated ear infections (spent hours with her at the drs)and while she didn't "suffer", her hearing could have been enhanced espcially in her college years...

    besides, the newer model hearing aids are barely visible and i'm sure he could, as time goes on, be removed for sports, etc...

  • 17 years ago

    My first thought was maybe to wait until he has started school and see how he does, then I read the article in the link.

    I imagine it will take some time for Bradley to adjust to the aide, but I think it would be beneficial.

    Here is a link that might be useful: Untreated hearing loss in children

  • 17 years ago

    I work in our school system part time and as far as I can tell not a single kid with hearing aids has problems with teasing. I'm not saying they don't get teased ever but over all the other kids are great about it. They really don't even notice day to day. Once in a while one of the boys has to use a plug in amplifier but no one gives it a second thought. I know that if there ever was a 'teaser' there would be kids on them like flies on honey.

    I have three kids , two that are very fair skinned, they don't tan much and really stand out in a crowd of tanned kids at the pool every summer. What can I do about it? Nothing really. They have a nice bunch of friends and a stock pile of sunblock. They have fun, go to school and are talented kids. No one thinks much about it except me, cause I'm the one who is constantly asking them if they have sun block on. One of my DD's friend's (and softball team mate) recently discovered she has type one diabetes. She has to test often and give herself shots near her peers. Everyone is getting used to it. We're learning what her numbers mean so we can assist her if needed.
    So if a kid needs sunblock, insulin, hearing aides, it's a no brainer in my book. Like Nike says,,just do it.

    Last January I temporarily lost hearing in my left ear and because I knew what I was missing, thought my world was turned upside down. I was ready to find a hearing aid when most of the hearing returned. I still have a high pitched ring that may be with me forever I'm told. No fun but it's ok. I learned how precious hearing was though!

    Bradley may not know what he is missing now but he will know some day. So please don't hold back on Bradley's future by denying him at least a chance at better hearing. In our school they test the student's eyes and hearing and once the loss is discovered they do expect parents to do something about it. If your on top of things now you won't have to worry about it when testing comes up. That might help change your dh's mind. Good luck Ginger!

  • 17 years ago

    Just do it is my advice!
    My gosh suppose he was in danger of being run over by a car and didn't hear anyone yelling get out of the way? or didn't hear the car coming? I know that is extreme, but a dog could growl at him and charge, would he hear it as a warning?
    Bradley's safety is the utmost importance, I know I don't have to tell you that Ginger, maybe Larry hasn't thought it through enough. Then you have the fact that he is going to hear things he has probably never heard before. Can he hear the birds singing outside?
    If you wait and he gets behind in school it will be twice as hard for him to catch up!
    You have to do what you have to do for him. This is NO different than getting him the chemo treatment.

    It sounds like Larry is the one with the bigger problem here.

    I'm sorry if I sound bossy here, but this is a subject near and dear to my heart. The person you're speaking of that would benefit from them is Bradley. Please do this for his sake!

  • 17 years ago

    DH didn't get his hearing aids until he was 6, wishes he'd gotten them sooner. We started getting our kids tested early because he didn't want them to be at a disadvantage like he'd have been. Is that enough of a testomony? Get them, if after you've tried them, then don't use them (he'll have a period he won't use them anyway. As far as getting picked on, he may, but he will if he is always saying what, of not answering or answering the wrong question. Get the aids! Dads ego can go to...okay you know the word. Because that's what it is right now, Dad's ego.

    Vickey-MN

  • 17 years ago

    Just Do It! When he's older, he will thank you for your courage to go ahead of your husband's wishes. I was teased as a child, because I was a foster kid - I survived and if he does get teased, he will survive, too. Being able to hear and understand directions is half the battle of getting an education.

  • 17 years ago

    PLEASE, PLEASE, PLEASE! get him hearing aids. Eric didn't get his first pair until he started college. He was picked on all through school by kids AND teachers! His loss is genetic and his parents knew about it all along. They didn't have much money but what extra they did have went to things other than hearing aids (nice way to say I have "issues" with some of their decisions).

    I am also emailing you, feel free to let me know if you have any questions!

  • 17 years ago

    I kind of agree with everyone but one thing jumps out... "he's borderline for hearing aid recommendation". I don't know how bad you son is, but if my kid were borderline for glasses I wouldn't necessarily make him wear them. It sounds like that he "may" not really need a hearing aid.

    I mean, put it this way, if you had to pay the $3000 would you be getting him one? If not, maybe you do need to reconsider. Just because you can get a free one, doesn't mean he should all of a sudden use it. Either he needs one and you'd be willing and were planning to pay or he doesn't need one now.

    Another thing to think about, are there other offers and programs going on at other times that he may be able to get into later if one is really needed? Don't let a financial reason be the deciding factor in if your child should wear a hearing aid or not.

    Good luck no mattter what you choose.

  • 17 years ago

    There is a little boy in our church who was losing his hearing. His behavior was really bad because of it. Where ever he went he was disruptive, loud, and threw tantrums. Other kids didn't like to play with him because of his behavior.
    He was not quite three when he got 2 hearing aids. In a short time he was the sweetest little guy. He behaved nicely and fit in with all the other kids. We can see his aids, but so what, they are part of him and made this poor little guys life normal. This year he just completed Kindergarden. His parents had a hard time accepting the need for the hearing aids, but they have never regretted it.

  • 17 years ago

    If he needs them, then you should do whatever is necessary to see that he has them. Maybe the doctor could talk to your husband and make him feel better about the necessity for hearing aids, and the potential difference it could make in Bradley's life.

  • 17 years ago

    I was recently diagnosed with the same type of hearing loss as Letmag.

    The hearing think that deafness is about what you don't hear. What they dion't know is about the noise. When you can't hear ambient sound still bounces off the eardrum. Sitting with one or 2 people I can carry on a normal conversation. Add just a few others or someone in the next room doing usual and not exceptionally noisy activity and I can no longer have that normal conversation. Like Letmag said sound bounces around and you cannot tell who is speaking or where the sound is coming from.

    Kids in the early grades are very unlikely to tease him. In fact they will probably be interested about his aids. It might make a great "show and tell" opportunity for him.

    As he gets older the kids get more conformist and meaner. Does your DH really think it will go easier on him when he shows up with aids in the fifth or sixth grade?

    Now classrooms and playgrounds are full of all sorts of sounds. He WILL be teased for misunderstanding and making simple mistakes due to his hearing loss.A hidden disability is less understood than a exposed one. You have a chance to spare him the stress. Use it.

  • 17 years ago

    Thanks for all the responses. I did take him in and get the impressions and have sent off the paperwork. Larry and I have already had an argument about it this evening. Lydia, thanks for the link, I emailed it to L and asked that he read all of it. Carla, that is really his point, that B's hearing is borderline, so he wants to continue evaluations and wait. The problem is, his hearing is nerve damage, and will not get better. The program is the first of it's kind, so whether they'll do it again, no one really knows. He has had two seperate testing facilities, the one through Vanderbilt - b/c they knew he'd likely have the hearing loss, but also through an ENT b/c he had tubes put in last year. I used a referral from B's ped to a guy not affiliated w/ Vanderbilt. When the lady did his hearing test, she had not read his history and did not know about the chemo. She kept going back and retesting and finally asked me if he'd ever had his hearing tested - I was like yeah, sorry I thought you knew his history and she was like yeah he has a lot of high frequency hearing loss. They pushed harder for the hearing aids than the Vanderbilt people, but I told them we were already dealing w/ it through Vandy. I have been content w/ watching him b/c he does speak really well, even better than children we know that are older than he is. My fear is when I'm not around. I do enunciate and speak up when I can tell he cannot hear me. Teachers/others will not do that for him. And I know from personal experience, kids will tease him regardless. Ugh. Thanks again, everyone. It's good to have a place to air this stuff out to more supportive people.

  • 17 years ago

    We know a boy that is 11. We've only known him a few years. He plays baseball with my middle one. He's got the coolest blue and red hearing aides. I've never once seen anyone tease him. He speaks pretty clearly, but you can tell that he does have hearing difficulties by some of his words and enunciation. He uses a little sign but that's mostly just to clarify things. It sounds like the kid I know's hearing is much worse than Bradley's. I would tell Larry to stuff it...people are much more tolerable of "difference" than when he was growing up.

  • 17 years ago

    I'm glad you're trusting in your own instincts, Ginger. You're a good mom! Bradley will be fine and Larry needs to concede this point. He's so outnumbered. lol

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