new to hearing loss... struggling with very unsupportive parents

I'm surprised nobody said anything about ALDA (Association of Late Deafened Adults) I've heard amazing things about them and I strongly reccomend ALDA to Late Deafened people.

View their brochure here: http://alda.org/pdfs/ALDA Brochure 910.pdf
 
hey warpedpink - the girl who started this thread lives in Britain.

I don't see why ALDA wouldn't support her. There's nothing on their website that says their support doesn't go overseas. I am not supposed to help people outside the California Bay Area at my job, but occasionally I do anyway. Especially if the person contacting me lives in an area with no support. I don't turn away a person in need and I don't think they will either.
 
Oh, I just meant maybe no one mentioned it because it's an American organization but you're right, they may have information about Britain's version of ALDA.
 
Oh, I just meant maybe no one mentioned it because it's an American organization but you're right, they may have information about Britain's version of ALDA.

My coworker was the previous president of ALDA.. I just asked her if they support people in the UK and she said a big YES! There's a large ALDA group over there. :)
 
Shame to have a hearing aids? No, I don't think so. It's shame on dad for turn you down.
 
I want to click "like, like, like" on every single post so far!

That is ridiculous that your father has taken away your aids. How would he like it if you hid his glasses, his shoes, his car keys? Tell him you need them to function, period. What you said above about passing your A levels should be crucial. No healthy parent would deliberately put obstacles in their child's path when it comes to education.

So I totally agree with the advice to talk to your audi, your school counselor, legal authorities, anyone you can - AND continue to talk to your dad yourself, please don't give up. Someone should make him see the light, I hope sooner rather than later. And I hope that "someone" can be you, rather than legal authorities, but if not, well, he's brought it on himself. You do not have to fight this battle alone if he won't listen to you. (Um, speaking of who is the "deaf" one in the family...)

Re: the discomfort. Yes, sometimes it takes time, but sometimes that "plugged up" feeling can be helped by different ear-molds, putting in an air vent (have to be careful, as if the vent is too large, it can cause that annoying feedback whistle), or using a non-allergenic material for the molds. (That would help more if you have itching, though; the non-allergenic material probably will make no difference re: the plugged up feeling.) And to some extent it's just something you get used to. But it should not be literally uncomfortable.

If the hearing aids themselves are uncomfortable behind your ears, sometimes that can be helped by adjusting the length of the tube so that the plastic HA sits at a slightly different place. I had one aid once that was rubbing me raw at a certain place; the audi changed the tube length and then it was fine. WHAT a relief!

Re: things sounding different, yes they do. Some of that "different" is because you weren't really hearing everything before, so if with the aids you are now hearing "s," "sh," and other sounds that were faint or missing to you before, yes they will sound different. That is a GOOD thing, and will just take some time to get used to.

The quality of people's voices and of music does change, there's no doubt about that. Some aids are better than others at meeting complex needs. If you're getting them from the NHS, you probably are not getting the most advanced technology possible.

However, anything is better than nothing, certainly, and it does take a while for the brain to adapt to the new sounds you are hearing. You might want to look into a listening therapy program. Here is one example:

Neurotone Inc | Hearing Loss Treatment Software & Services

Ask your audiologist for suggestions, and/or google "listening therapy" and see what you find.

Some people find it easier to adjust to hearing aids if they wear them only a few hours a day for a while, then work up to wearing them full-time. Others are fine with wearing them full-time right from the start. It's an individual thing. Again, your audi might be able to give you advice on that.

Also, just a word: now that you know you have a hearing loss of unknown origin, you need to be especially diligent about protecting yourself from loud noises. No more dancing right in front of the band! Wear ear protection if you go to sporting events where there is a lot of loud noise from the crowd. Don't listen to your iPod cranked up to high volume. Google "ear protection" and "noise-induced hearing loss" and you will find a great deal of information.

You sound like a very mature young person and well-equipped to advocate for yourself. I suspect that your parents must have done something right along the way for you to have developed those strengths. I hope that they can find a way to get over this hump in the road with you so that your relationship with them is not destroyed forever. Perhaps if they realize what they are risking, be it from conversations with you or conversations with a school or legal authority, they will come around as they should and start learning what they can and should be doing to help you.

All the best to you, and I hope things can start to get resolved quickly.
 
Hey el 888,

I don't think I really have much information or advice that hasn't been given already, but I just wanted to give you a :hug: ! I'm so sorry to hear about all that's going on. At least at your age you can be out of there soon!

Welcome to AD- I'm sure you'll find a lot of great support here.
 
From my coworker:
Here are some websites supporting people who lost their hearing later in life:

IFHOH News <http://www.ifhoh.org/> International Federation of Hard of Hearing People

Welcome - European Federation of Hard European Federation of Hard of Hearing People

National Association of Deafened People National Association of Deafened People (has lots of publications to help explain your situation to yourself and others)

Royal National Institute for Deaf People
19-23 Featherstone Street
London
EC1Y 8SL
Telephone: (44) 207-296-8000
TTY: (44) 207-296-8001
Fax: (44) 207-296-8199
informationline@rnid.org.uk
Home - Action On Hearing Loss: RNID
Description: Provides a range of information,
referral, employment, care, and training services for
deaf and hard of hearing people. Offers a wide range
of fact sheets and other informational resources for deaf and hard of hearing people and their family,
friends, employers, and professionals. Includes an
extensive list o organizations in the UK.
 
thanks to everybody for taking the time to read my post and for all the advice.
ive tried to explain to my parents that i need to wear the hearing aids otherwise i'll fail my A levels. ive tried to convince them that they can't expect me to get the grades i will need to get into medical school if i can't even hear in school! ive tried to persuade them that since ive lost some hearing, i really need the hearing aids just to get by in everyday life!!

i know some people have mentioned social services but as you've said if they get involved there's no going back and it would have a big impact on my brothers and sisters so i want to avoid that if at all possible!

without being able to hear i'm struggling alot, both in school and out of school... even my hockey has suffered since i can't hear the whistle or coaches and teammates

my parents definitely view wearing hearing aids as a sign of weakness and i just can't get through to them. i've spoken to one of my teachers at school but it didnt get me very far... my dad just denied having my aids, claiming i must have lost them or that i must just not want to wear them!! it's just been my word against his and he doesnt seem to care how difficult he's making life for me!!

If he is making life this difficult for you over your hearing loss and your hearing aids, I would venture a guess that he is also making life miserable for your bothers and sisters in a different way, and for your mum, as well. The best thing you could do for your sake, and for the sake of the rest of your family that has to live with this unreasonable tyrant is to get social services involved. This man is controlling and abusive, and it doesn't happen overnight. He has been abusive to his family for years, if you want my take on the situation. Don't allow him to continue this type of domination over you, your siblings, or your mum.
 
I hate to argue with you but I have seen cases that show the opposite.

That doesn't mean that their primary goal is not to keep families together. Sometimes is simply isn't possible to keep a family together and protect the children's best interest at the same time.
 
hey I didn’t know where to post this… I hope here is ok

I’m new to hearing loss and I’m having some problems adapting. I’m 17 and was diagnosed with a moderate-severe bilateral sensorineural hearing loss in march. The cause of my hearing loss is unknown and less than 6 months ago I had normal hearing. Losing my hearing was a massive shock as I’ve never had any problems with ear infections or anything like that. I’m really struggling to adapt and had never realised before how much I depended on being able to hear well!

Shortly after diagnosis I was fitted with BTE hearing aids on the NHS. This helped my hearing greatly but I find wearing hearing aids very uncomfortable and hate the feeling of having my ears ‘plugged up’. Also, I’m finding it difficult to get used to how everything sounds with my hearing aids. Everything sounds weird and I find it hard to make out what people are saying.

However, the main problem I have is the attitude my parents have towards my hearing loss. They are embarrassed that I have lost some hearing and are ashamed of me needing hearing aids. They don’t like me wearing hearing aids and ever since I got them at the beginning of april they have taken every opportunity to tease me for it and make me feel completely worthless simply because my hearing isn’t as good.

They don’t like me wearing hearing aids to the extent that recently my dad won’t let me wear them. He says it’s pathetic and embarrassing that a 17 year old should need hearing aids and has taken them from me. Now that I can’t hear very much I’m really struggling especially at school. I really don’t know what to do and any advice would be greatly appreciated

thanks

i understood how you feel bout that. Your parents going through awkward phase. But have you ever thought taking up ASL? Interpreter can provided afterward when you done picked up ASL. Plus if going through school, i also recommend for closed caption for tv available plus notetakers just case if there is lectures. For your parents, maybeh need to get some research or learn sign language plus they need to let have hearing aids. you almost of age.
 
I am experience lots of study reading I am pretty extremely familar, 17 years ago is legal si very authority because parents shame because lazy or irresponsiblity if supposed serious risk parents not enough responsiblity I am experience lots of observed it social worker is very strictest law! I already grow my personal

if you parents abuse to younger then social worker investiage to your personal!

Don't do that complaint to frustrated issues not easy because pretty lots of hard!
 
thanks to everybody for all the suggesstions and the contact information thats been posted. Its really daunting the idea of contacting any of them as i don't want to rock the boat at home. Also it's just hit me that i'll never have normal hearing again like i used to. Things are different now and i'm going to have to learn to deal with it all! Being hard of hearing was previously something that had never ever even crossed my mind and now all of a sudden i have a hearing loss and i'm finding it hard to adjust. I'd imagine being able to wear hearing aids may make things a bit easier for me??... but i don't know how long it will be before i can wear them.
Maybe as much as i dont want to and as daunting as it is i may just have to contact one of those organisations as not being able to wear hearing aids and therefore not being able to hear is only going to cause me problems isnt it?? :(
 
thanks to everybody for all the suggesstions and the contact information thats been posted. Its really daunting the idea of contacting any of them as i don't want to rock the boat at home. Also it's just hit me that i'll never have normal hearing again like i used to. Things are different now and i'm going to have to learn to deal with it all! Being hard of hearing was previously something that had never ever even crossed my mind and now all of a sudden i have a hearing loss and i'm finding it hard to adjust. I'd imagine being able to wear hearing aids may make things a bit easier for me??... but i don't know how long it will be before i can wear them.
Maybe as much as i dont want to and as daunting as it is i may just have to contact one of those organisations as not being able to wear hearing aids and therefore not being able to hear is only going to cause me problems isnt it?? :(

One thing for sure, if you want things to change, you have to do something. Right now, you've said your grades are failing because you can't hear. You can't hear because your father won't give your hearing aids back to you.

This won't change if you don't do anything.
 
If you are a child, how did you even get an appointment and get issued hearing aids without parental involvement?
 
If you are a child, how did you even get an appointment and get issued hearing aids without parental involvement?

because i'm 17 and once your over 16 your parents dont have to be involved with any medical treatment
 
el...888 My advice is to try and find somebody to be on your side and who will be your advocate, somebody who will stick up for your version of events and not believe everything your dad says. At the moment it appears that you are on your own.

Suggestions include:
{1} See your GP on your own who will know your medical history and about your recent hearing loss. Explain the situation and ask for advice. The GP will know of other services & people to contact that you won't.
{2} Another idea I had is whether you can visit the NHS audiology department where you had your hearing tested and HAs (Hearing Aids) issued. Most audiology departments have a hearing therapist who's job is to advise families how to adjust to a child's hearing loss.
{3} Or is there another member of your extended family (a grandparent? a favourite uncle/cousin?) who will be able to knock some sense into your dad?
{4} Is there a form tutor or favourite teacher at school you can talk to? Or a sports coach?

It appears that you're going to need advice on two things at the same time. How to handle your hearing loss, and how to handle your dad and home situation. There are adults out there who can help you and advise you - believe this! - but the question is how to find them. Don't give up if the first person you ask is no good. Keep trying until you find the support and wisdom you need. And the more people you find, the better it will be for you.

And don't forget that you can always come on here at AllDeaf and find people willing to listen.
 
thanks to everybody for all the suggesstions and the contact information thats been posted. Its really daunting the idea of contacting any of them as i don't want to rock the boat at home. Also it's just hit me that i'll never have normal hearing again like i used to. Things are different now and i'm going to have to learn to deal with it all! Being hard of hearing was previously something that had never ever even crossed my mind and now all of a sudden i have a hearing loss and i'm finding it hard to adjust. I'd imagine being able to wear hearing aids may make things a bit easier for me??... but i don't know how long it will be before i can wear them.

Yes, wearing aids will make things easier for you, especially in school. It IS an adjustment, particularly for a teenager when you may feel very alone in this, but after a while they will just become second nature to you. You need what you need, just as if you needed glasses or a wrist support or a knee brace or any other physical type of help.

Maybe as much as i dont want to and as daunting as it is i may just have to contact one of those organisations as not being able to wear hearing aids and therefore not being able to hear is only going to cause me problems isnt it?? (



Well, yes. If you're used to hearing and depend on your hearing, NOT hearing is definitely going to cause you some problems. If you can be helped by aids, which apparently you can, wearing them will certainly make your life easier. Not 100% "normal," but certainly closer to normal than not using them.

Once you are actually able to contact one or more of the organizations suggested, you might find it not nearly as daunting as you imagine it to be right now. Step by step, you can get what you need. Do keep posting and let us know how it goes.
 
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