ALF - question about HOH

  1. You have chosen to ignore posts from ALF72. Show ALF72's posts

    Re: ALF - question about HOH

    Hi Misslily.  I didn't experience hearing loss until about 3-5 years ago. I got a really bad sinus infection that went improperly diagnosed and treated for about 5 months when I was in my early 30s. I then developed tinnitus.  The hearing loss came on after that - or it may have come at the same time but it wasn't diagnosed till then. And I was distracted by the constant ringing so I didn't notice right away. ;-) I have hearing tests every year. The most recent was about 3-4 months ago. I had an MRI last year to make sure that there was no additional problem.  There's not, but I have very mild hearing loss in both ears [it was just one until this year].  It only impacts the spoken word, esp when there is background noise or when a man w/ a deeper voice or who is soft spoken is talking.  It's at specific decibels.

    I have been given pamphlets for hearing aids.  I'm actually teleworking today b/c of snow so I just ran into the kitchen to get the pamphlet that I have stuck to the bulletin board. I'm not ready to make the plunge just yet [though I'm reconsidering based on my business trip last week].  The aids that I was interested in were by ReSound.  I liked the ReSound Live 7-BTE model b/c you could adjust it as needed.  The be by Resound and the dot [squared - it's a raised 2 but I can't type that here] were also pretty small but are automatic.  They also have custom models.  The estimate I got was $5k for both ears.  I don't know how much would be covered by insurance b/c I haven't gotten to the point where I'm ready to take the plunge.  I think that point is coming soon. Anyway, the website is www.resound.com.  

    Strangely enough, I am super bothered by loud noises. I carry ear plugs to wear at the movies and at the gym. I can't use ear buds, but have been told by the audiologist that ear phones are okay. 

    I hope this helps!
     
  2. You have chosen to ignore posts from tomarra. Show tomarra's posts

    Re: ALF - question about HOH

    Misslily,


    Both my sister and I have mild/moderate hearing loss since birth.  I recommend that you continue to have them wear hearing aids through the school years.  Once they are adults they can decide is they want to continue wearing them.  My mother was very relax about it, so I did not wear them all the time. So, I ended up having a lot of speech and writing problems.  Which I'm sure you can tell by my writing skills. 

    My sister and I were born 8 years a part and when I was born there was not a lot a resources to help us.  By the time my sister came the city of peabody school system did a better job helping kids with hearing loss.  Though, I still feel there is still a lot that has to be done to educate people about hearing loss.

    I know that I was assigned a speech-language pathologist and she was there for me through out my school years.  I will talk to mom tonight and get you more information.

    For a good support system chech this link out.

     
  3. You have chosen to ignore posts from ALF72. Show ALF72's posts

    Re: ALF - question about HOH

    Miss Lily, my grandmother also lost her hearing [it was considered profound hearing loss] in her 40s [or so] due to a reaction to penicillin [why no one initially told me this was the reason I don't know - I was given penicilin for my sinus infection and had an allergic reaction, so this could have been the source of my hearing loss].  She learned to lip read on her own, though she also used a hearing aid and had a CCTV device. 

    One of the reasons I'm hesitant to get a hearing aid is b/c of the driving issue.  I don't know whether I'll have to give up a license; my grandmother had to. Not driving is not an option for me.  My hearing is 'fine' other than for certain levels speech.  I'm sure I'm freaking about nothing, but don't want to take the chance.  If an audiologist has told you that your children need hearing aids during their formative years, I would go w/ what they recommend.  GL.
     
  4. You have chosen to ignore posts from ajuly09. Show ajuly09's posts

    Re: ALF - question about HOH

    Lily, as a classroom teacher I have worked with children with hearing loss.  Right now I have a student who has mild hearing loss and I wear an FM system to make sure that the student can hear me amongst the background noise and a large classroom.  This student socially fits in and the children hardly notice that he has hearing aids. He goes to speech a few times a week.  He is doing very well in kindergarten, right up there with the other students academically. You would not know that he is hearing impaired from the way he talks or his speech.  I know every case is different, but wanted to let you know for the future that children with mild hearing loss can "fit in" in a classroom and still learn and make academic gains just like any child w/o hearing loss. 
     
  5. You have chosen to ignore posts from bostonslp. Show bostonslp's posts

    Re: ALF - question about HOH

    misslily - are your twins in Early Intervention? 
    If not, you should get them in right away - they would qualify because of the HL.  They will have a speech person and teacher of the deaf out to your house hopefully weekly. 
    Also, they will help you with the transition to school when they turn 3 - making sure that your twins get everything that they need. 
     
  6. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    Thanks everyone.  I haven't used EI yet - I've been taking them to Mass Eye & Ear monthly to see the speech pathologist.  I'm thinking of switching to EI just because I think it will be easier.
    My biggest problem is my DH.  He worries so much that they will be teased or bullied when they get to school.  He hates having them wear their aids - so I have them wear them mostly when he's at work.  I know they should wear them all the time, and I'm working on him to realize how important this is.
    It's hard because the aids are a choking hazard so I have to watch them like a hawk.  Right now they wear bonnets (which they hate) when they wear their aids, but I'm told I can transition out of that in a few months. Hopefully that will make it easier for all of us.  I'm told eventually they stop pulling them out and just "put them in a go".  I hope so.  I makes me profoundly sad to know that my beautiful children are going to have to deal with this for the rest of their lives.  Thank heavens that they dohave a lot of hearing.  As I said, if you met them, you'd never know.  They answer to their names, turn when they hear noises, can find a book if I start reciting the words. Receptively I'm told that they are right on track - so that's helpful in making me feel a little better about it.
    And I know that they will qualify for an FM system when they get to school.
    BTW - Alf - my mom has hearing aids that she got a few years ago and she's still driving.  I can't imagine why you would have to give up your license.  Besides - the aids would help you hear things like sirens and horns - right?
     
  7. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    Tomara - thanks for writing in.  It's helpful to hear everyone's stories.

     
  8. You have chosen to ignore posts from ALF72. Show ALF72's posts

    Re: ALF - question about HOH

    I know, misslily. I realize I'm probably freaking for nothing.  My grandmother did have to give up her license, but that was in the 60s. I hope you can bring your DH around to your way of thinking re the kids wearing their aids.
     
  9. You have chosen to ignore posts from bostonslp. Show bostonslp's posts

    Re: ALF - question about HOH

    Misslily - Just so you know where I am coming from, I am an SLP who works for early intervention and in the schools.  I have worked with many families who have gone through situations similar to yours and I (try) to understand as best I can how difficult it is for a family. 
    I don't know what town you live in (or if you want to reveal that at all) but I do know that the EI program I work for has a wonderful reputation for working with children with all types of HL.  They usually have a social worker involved to help with worries and challenges that families face.  In addition, they have support groups specifically for families with HL.  I don't know if you are looking, but Emerson College also has a wonderful program and as part of it has a support group for parents. 

    It seems like your LOs have a great foundation and have a lot working for them!  Also, with so much new technology, HAs are coming a long way and are getting smaller and smaller so that other people barely notice them. 

    I know that this phase is so hard with the kids pulling them out, but believe me, once they realize the benefits of the HAs and make the connection that they need them on to hear better - they won't want to take them off! 
    If you have any questions, or want to pick my brain, please do.  You can also message me if that is easier.  There is a lot of help out there - for free - which can make it even easier for you and your family. 
    I hope that this information is helpful and if it's not, or I'm saying too much, please let me know. 
     
  10. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    Bostonslp - thanks so much.  It's really helpful.
    I live in a nice town west of Boston that has a good reputation for schools and education so I'm sure they will be well taken care of when the time comes.
    Sometimes I simply despair that my beautiful babies have this problem.  Then I think about how much worse it could be. But i wouldn't wish this on anyone.  It's so hard right now - I worry about them learning to speak properly.  They are at home with me and we read a lot (they love books) I sing to them all the time and try to talk up a storm. I basically narrate my day as we go along.  "Mommy is folding laundry." "Cup - here is your cup. do you want more milk?" stuff like that.
    MEEI has been taking great care of us.  They have a program that allows us to "rent" the aids until they are 3 years old.  If they break or lose them, MEEI will simply replace them for me. And they help me with the speech issues and try and give tips to make the wearing of the aids easier.
    I have been told that eventually they "get it" and actually want to wear them.  I'm starting to see signs of that.  My DS has cried every day this week when I've taken them out for nap time.  Of course he cries when I put them in too - but I think that's because he hates the bonnet. But without the bonnet, they do tend to pull them out and PUT THEM IN THEIR MOUTHS instantly. (sigh)
    Both DH and I worry that they will be teased or worse at school.  It was nice to hear from the teacher who said her student is doing well.  Their aids are small and in the case of DD her hair covers them already.
    It's just hard - having children who have a problem that I can't fix.  They will never get better - and of course they could get worse.  I shouldn't complain - they are beautiful, I think they are fairly smart, they are curious, funny and fun. And some days I think "oh it's no big deal - they'll be fine."  Other days I think "Oh cr@p - why oh why did this happen?"
    I am going to get them into EI - they are 18 months old now, so I can get a good 18 months of EI time.  I'm hoping they will be able to attend "regular" nursery school so they can make some neighborhood friends when they are 3 or 4 so they will already have some buddies when they get to kindergarten.
    Thanks again for all the support. I'm open to any and all ideas anyone has to make things easier for me and most importantly, better for them.
     
  11. You have chosen to ignore posts from KAM2007. Show KAM2007's posts

    Re: ALF - question about HOH

    Misslily, my story is a little different, but I'll share my experience anyway...I had 60% hearing loss as a infant/child due to constant serious ear infections. I never had hearing aids, but probably should have! I went to a speech therapist from when I was a toddler to about 2nd or 3rd grade. I have regained a majority of my hearing because my loss was due to scars from the infections and I physically grew larger than the scares are. My hearing is still not perfect, but I manage without much hassle at all. This is what I've been told-but I've never been to an audiologist as a teen/adult to get any more explanation.

    Ways I feel it has impacted me is learning languages. I've mastered English pretty well, but learning a new language is tough. I just don't hear the subtle differences that most people can hear.
     
  12. You have chosen to ignore posts from Lucy617. Show Lucy617's posts

    Re: ALF - question about HOH

    Misslily,

    My DS who is 9 months old has moderate hearing loss and wears hearing aids.  I just called EI earlier this week and am working on scheduling our first appointment.  I completely understand how you feel.  We also rent the HAs from MEEI.  Everyone there is great and help to make us feel better about what we're going through.  The other kids in his daycare don't even pay attnetion to his HAs.
    I just wanted to let you know that you're not alone in either what you're going through or what you're feeling.
     
  13. You have chosen to ignore posts from CT-DC. Show CT-DC's posts

    Re: ALF - question about HOH

    misslily,
    many children with chronic ear infections have mild hearing loss (not why your kids have it, I know) but you'd never know it when you observe them - they seem to respond to sound, your voice, know their name, etc. 

    BUT the issue is they aren't hearing ALL the sounds of language - it's easier to hear consonants vs vowels (or the other way around) because of the decibel level of the consonants (or something like this, this is a VERY simplified way of thinking about it) but basically, kids can hear only HALF the sounds of a word, making it hard to actually SAY the word.

    So instead of hearing elephant they hear lft - and if that's actually WHAT you hear, that's WHAT you'll SAY, too, making speech delayed.  So that's why they need to wear their hearing aids.  I think that while you and your husband will certainly have your emotions and feelings, it's important to keep those at bay vs. what's BEST for your children. And wearing their aids is best for them.  so they will wear them.  period.  just like they HATE their carseats and seatbelts and bike helmets but they WILL wear them.  period.  because it's best. and safest.  so for your children, wearing aids is just what is.  period.  once you both can get to that state, it'll be easier for you to have that attitude and expect your children to wear them.  and you won't feel so sorry for them. 

    Oh, it's hard for me to explain what I mean without making me sound either hard-hearted or flip.  I know it's not this easy, and I know it's hard to imagine that your wonderful children have any type of need that's unusual. 

    does this help me explain?  I am VERY allergic to nuts.  deathly.   as in epipen.  all my life everyone has been so very sorry for me - that I couldnt' eat pecan pie, or eat cherry ice cream, or have bit o' honey candy or eat nuts on my ice cream.  everyone except my parents. they were just matter of fact - you can't eat that, you are allergic, period.  so I don't feel sorry for myself.  but if my parents always were sad about me, and kept saying, I know you want to eat pecan pie, I'm so sorry you can't, let's see what we can do to make it up to you...  then I'd feel that I was somewhat less than others, and I'd be sorry for myself.  which is unproductive, to say the least.

    we have a child in our center with a club foot.  basically he has had several surgeries, at at 5 months old he wears special shoes and a bar between them to keep his legs turned out properly.  he wears this bar 24 hours a day (except in the bathtub).  yup, in the crib, to play, when you carry him, in the carseat, period, all the time.  in a few more months he'll graduate to only wearing it 12 hours a day, and then to eventually 10 hours a day.  Until he's 4 yrs old.  YUP, until he's 4 (or 5 at the oldest) he'll wear a spacer bar and special shoes ALL NIGHT every NIGHT.  now, he's gonna hate it at some point, but his parents also are very clear that if he doesn't wear it, he won't walk or play soccer or do everything they want him to do, eventually.  so they don't feel sorry for him.  and they don't let anyone else, either.  he's already learned to turn from back to front and he's working on from tummy to back.  he doesn't feel sorry for himself, he just keep doing what he does with the bar.  and that's a great attitude.

    so that's what I'm talking about, mislilly, re: attitude. 

    but how to keep those hearing aids IN toddlers ears and not IN mouths?  Yikes, I got nothing!  Laughing

    When will they start working with a speech therapist?  I'd assume it's sooner than later, as 18 month olds typically have some words, and by 2 yrs old they have sentences - you want them to stay pretty much on target (hence the wearing of the aids all the time). 

    oh, could they wear their bonnets even when they nap and don't have the aids in, so they don't associate the bonnets with the aids?  Just they always have the bonnets on, that's part of who they are.  (and for you, couldn't you find cute bonnets that match their outfits sometimes so you can dress them up and look even cuter  - if that kind of thing matters to you, that is.  Me, I hvae a hard time getting myself dressed, if I ever had children they'd be the worse-dressed children in the world, totally mis-matched and everything, lol. so I would NOT be the one with matching bonnets, although I'd envy your kids their matching bonnets. 
     
  14. You have chosen to ignore posts from lemonmelon. Show lemonmelon's posts

    Re: ALF - question about HOH

    Regarding teasing -- I had a pretty impressive speech impediment growing up (now people just ask me where I'm from all the time because they think it's an accent); my older brother is legally blind and had to wear those giant, thick glasses; and one of my good friends was almost totally deaf and wore really big hearing aids that buzzed all the time. We all got teased, but not for that stuff. Everyone gets teased. There's absolutely nothing any of us can do about that, nor should we -- it builds character.
     
  15. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    Oh - I hope I didn't give anyone the impression that my kids don't wear their aids.  They do wear them every day.  Well - once in a blue moon we take a day off, but basically they do wear them every day for most of the day.  It's not easy to explain how hard it is.  It's not like a car seat or helmet - it's a struggle with them pulling them out or trying to pull off their bonnets etc. So imagine your LO pulling something that they need out of their ear and trying to eat it (choking hazard). Now imagine two of them doing it.  Now add in everything else you need to do for your LO every day - now double that. plus the things you do for the rest of your family (laundry - dinner etc.) That's my day...every day. :)

    Lucy617 - I'd love to chat more - does your LO wear his aids all day?  How is it going having him wear them at the day care?  Has he started pulling them out yet?  Mine were fine until about 10 months when all heck broke lose with them pulling them out. That's when I got the bonnets from Silkawear.
     
  16. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    And I don't ever let them know that I feel sorry for them.  They will never ever know that.  That's something I don't share with anyone.  Not even DH.  It's just something that is in my heart because they are my children and I love them.
    We just get on with our day.  It's normal for us to put the aids in after breakfast until nap time and then again after nap until bath time.
    It's very hard to explain without sounding like a whimp or a whiner - and I'm neither.
     
  17. You have chosen to ignore posts from lemonmelon. Show lemonmelon's posts

    Re: ALF - question about HOH

    You don't sound like any of those things, miss. The logistics of the whole operation sound really difficult.
     
  18. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    As an example - even the audiologist said one day, "I don't know how you do it."  If you have one at this age who is pulling out his/her aids you can keep an eye on him/her.  If you need the bathroom you can take the baby with you.  But you can't take twins to the bathroom with you.  I can't even run to the basement to change the laundry.  What if someone pulls out an aid?  What if one of them chokes the other with the strings of the bonnet?  It will get easier and I should just get on with it and stop complaining, but some days I just want to sit down and have a good cry.
    I just wish they'd start talking a little more.  I think once they start to talk, I'll be able to worry less and I'll know that at least all the effort I'm putting into it is helping them. :)
    Thanks everyone for all the ideas and thoughts.  I do appreciate it. 
     
  19. You have chosen to ignore posts from Lucy617. Show Lucy617's posts

    Re: ALF - question about HOH

    Hi Misslily,


    Yes, my LO does wear his hearing aids all day at daycare (except for naps).  He's good with them when he's occupied.  It's when he's not doing anything that he pulls them out. 
    It's almost more of a challenge for me to just get them on him because he always turns his head to see what I'm doing which blocks me!  Maybe he knows more than I think and does that on purpose.  ; )

     
  20. You have chosen to ignore posts from lemonmelon. Show lemonmelon's posts

    Re: ALF - question about HOH

    Miss, do you think if they wore them more consistently they'd play with them less? Maybe they would just get used to them.
     
  21. You have chosen to ignore posts from KAM2007. Show KAM2007's posts

    Re: ALF - question about HOH

    one bonus of all my speech therapy-no boston accent! People ask me where I'm from all the time and when I tell them I grew up just outside of Boston they're all stunned.
     
  22. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: ALF - question about HOH

    Hi KAM - that's funny! Isn't it weird how some towns get the accent and some don't?  I don't have one and none of my friends to either and we all grew up in the suburbs of Boston. (Newton, Wellesley, Weston, Dover etc.)
    Lemon- to answer your idea - my kids wore their aids without any problem until about 10 months old.  Thenone day - poof! My son went from wearing them all day to wearing them for 10 minutes.  I couldn't keep them in his ears at all.  And he would pull out her aids too!  That's when I got the bonnets.
    The audiologists tell me to just hang in there.  They see this a lot at this age.  Guess I'm just impatient.  I want it to get better, and I want them to speak more.  I'm sure one day I'll look back and say, "What was I worried about? They wear them without any problem and speak fine!"  As with all things with toddlers...it's just a phase.  It's just one of the harder phases to get through.
    Thanks again to everyone!
     
  23. You have chosen to ignore posts from KAM2007. Show KAM2007's posts

    Re: ALF - question about HOH

    Missllily-that's the group of towns I grew up in...and have since moved back to. Odd how the accent has skipped most people here.


    I'm sure the twins will start to accept their hearing aids again soon. Then probably go through a phase as teenagers in no wearing them. How profound is the hearing loss?  Are you able to have them do play dates/groups?

     
  24. You have chosen to ignore posts from tomarra. Show tomarra's posts

    Re: ALF - question about HOH

    Misslily,

    The best advice my mother has is to be advocate for your children and to listen to gut about everything.  She also wished she had join a support group because she had all of guilty feelings about our hearing loss.  I thinks it's normal for every parent to feel guilty when it comes with their children especially if the have a disable that's why I highly recommend support groups. 

    Truth be told, my mother was the best mother ever.  She was our biggest advocate and no matter how bad our days got she was always there for us.  Plus, she raise three successful children...one being microbiologist, an speech pathologist and an architect.

    In regards, to you kids being teased ...I don't think that will be a big issue at first.  Kids these days are used to seeing people with bluetooth these days and will think that your kids have this cool toy.  What you might have to worry about is other kids pulling the HA out of their ears!

    It may become a big issue once your kids hit the pre-teen or teenage years.  On top of all of their other insecurities the HL be may at the top of their list.  So, if it becomes an issue case just make sure they see counselor.

    If you haven't done so..I would have your husband and you try on hearing aids so that you can get a feeling to what's it's like.  My sister and I used to get a lot headaches during our pre-teen & teenage years.  We often have to take them out for an hour or two to get over the headaches. In some cases we had to bring them back to the shop to make adjustments.

    This all I can think of now and if you have another questions just ask.
     
  25. You have chosen to ignore posts from lemonmelon. Show lemonmelon's posts

    Re: ALF - question about HOH

    In Response to Re: ALF - question about HOH:
    [QUOTE]I don't have one and none of my friends to either and we all grew up in the suburbs of Boston. (Newton, Wellesley, Weston, Dover etc.)
    Posted by misslily[/QUOTE]
    all the rich suburbs! Accents are for poor people. Which is why they drilled them out of us at Emerson (also where I got my speech therapy).
     
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