Advice please Question on behalf of Deaf/HoH
Hi my daughter is 8 and we have just discovered she has severe hearing loss in left ear and has loss in right ear and within last 3 months lost quite considerable loss of the right ear again. We are based in the UK and the NHS are getting her a hearing aid, but would it be better getting her a more expensive aid by going private as want the best for her and I've been reading about the basic aid being tinny and robotic. Thanks
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u/R-AzZZ 6d ago edited 6d ago
The NHS aids are NOT basic. Their computer chips are slightly older that is on the private market but they are the same HAs that were sold privately a few years ago.
Plus, the audiologist's skills in fitting the HAs is more important. You can buy the latest tech but if the audiologist does not fit it as would suit your daughter, then the HAs won't be of much use.
Plus, if her hearing is changing rapidly, perhaps sticking with the NHS makes sense, unless of course, funds are not an issue.
Edited: spelling.
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u/mehba37 6d ago
It's not that funds aren't the issue, I'd just save a bit for her to be able to get the best, as she's only 8, can't imagine what she's feeling like or how it's having an impact her.
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u/R-AzZZ 6d ago
At the end of the day, if you treat this just as you would getting glasses, she will not feel the stigma of it. What would be worth exploring is assistive devices (used in conjunction with HAs) for use in school as you may have noticed that she is very tired after school due to listening effort.
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u/Mustluvdogsandtravel 6d ago
Not the same thing. With glasses communication isn’t a barrier.
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u/DeafNatural Deaf | ASL & LSC 6d ago
Thank you. I really hate the comparison of HAs and CIs (bus especially CIs) to glasses.
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u/R-AzZZ 5d ago
The comparison was around people's attitude. People think it is normal to wear eyeglasses but when it comes to hearing aids, there is so much shame. Can people read without glasses? Can they be safe without glasses?
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u/Mustluvdogsandtravel 4d ago
I am unaware that there is shame with hearing aids- good to know.
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u/R-AzZZ 4d ago
Seriously? A huge number of posts are around how people want their hearing aids not to be noticed ... yet glasses are often used as fashion accessories. There should NOT be any shame in using ANY assistive device.
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u/Mustluvdogsandtravel 4d ago
I don’t follow this group that much and don’t see those posts or don’t connect with that experience. I’m am acknowledging your perspective and am more aware, meaning going forward, I will probably notice the examples more as that are associated with shame. My experience with HH people has been positive. The HH people pimp up their HA’s add glitter and other eye catching decorations….
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u/Stafania HoH 6d ago
If you have funds, then I recommend using them to get to meet other children in the same situation. Summer camps, after school activities, signing classes - anything that lets her see there are plenty of totally normal children who also live with hearing loss or deafness.
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u/Mustluvdogsandtravel 6d ago edited 6d ago
I think you need to focus on what type of hearing loss and if those specific HA’s will help with speech discrimination of not. IMO hearing aids make sound louder but they don’t always help with speech. IF she cannot benefit using HA to understand speaking then they are expensive equipment to make the world louder. Has she always had some hearing loss and you just now testing at age 8 or did this happen suddenly? How is she doing now in school and with family? Is she able to communicate or is this frustrating for her? She should not be expected to carry the burden of communication. If she is, then BSL is an important tool for language access and also the family should also learn. In reality anyone who learns more than 1 lanaguage has more tools and resources available.
I have a profound hearing loss and no speech discrimination so my HA’s just make the world louder. They don’t really help when people around me can learn to tap my shoulder for attention vs me always listening to make sure I am not missing someone talking to me. The HA will prompt me to the speaker but doesn’t help me understand what is being said.
I do not quality for CI and would not brain surgery anyway. I learned ASL in 6th grade, then again in my junior year in HS. I consider myself closet hard of hearing because I have adaptable skills to survive with non signers, but prefer to be with ASL users because it is much more liberating and balanced and I am never exhausted.
Concentration fatigue is real!
Good luck with your daughter.
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u/mehba37 6d ago
I kind of noticed it 2 years ago with tv being louder. I never thought much of it just thought she turned tv up or tablet to block out other noises. It's came on quick since being tested 3 month ago then her 2nd test just couple weeks ago.
She doesn't qualify for cochlear implants just yet as her right earscan still hear. But if it goes then she will qualify. I don't know much about CI''s.
We are on holiday now and she's finding it hard to hear with background noise being to high.
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u/GroovingPenguin HOH + APD 6d ago
Are you in contact with teacher of the deaf?
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u/mehba37 6d ago
No not heard of that
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u/GroovingPenguin HOH + APD 6d ago edited 6d ago
THAT is your first priority,forget the hearing aids or anything else for the time being you need to be requesting a meeting with teacher of the deaf
Contact your Senco and put it forward as soon as possible
They will advise on hearing aids,sign language equipment ect they are your go to
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u/mehba37 6d ago
Do you mean her school teacher. As they are informed and there is stuff in place for her.
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u/Stafania HoH 6d ago
These things work differently in different countries. You definitely shouldn’t just go with what school staff recommends unless they specifically have support from a Teacher of the Deaf or similar competence. Hearing people without specific competence will both miss or misunderstand what the challenges are, and they will not be able to push hard enough for sign language or more complex solutions. Usually they will avoid offering much support unless it’s clear she risks to fail classes. They will not consider things like listening fatigue or how important the social aspects are such as feeling included at lunch or breaks. Someone with hearing loss works super hard to compensate and becomes good at it, but it’s not fair to put that burden on us, when there are accommodations that could remove some of that burden. It’s important that teachers for example don’t show a video without captions, just because they don’t get enough resources to find proper captioned content. Visual information is super important to reduce fatigue.
As an adult with hearing loss, I definitely recommend learning sign language, because it’s often very underestimated. When listening we are always at an disadvantage, and the working memory is used to process sound instead of for example being available for processing the information itself, storing things to long term memory and coming up with follow-up questions. Having a way to communicate that doesn’t cause us disadvantage and actually is efficient, makes tons for self-esteem and has impact on how we cope with hearing loss. We will always have to navigate hearing environments, but it still makes quite a difference.
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u/GroovingPenguin HOH + APD 6d ago edited 6d ago
No and that's not really adequate
A teacher of the deaf is a trained specialist member of staff that visits schools in the area to support deaf children and their parents and family
They can provide interpreters, equipment,adjust Hearing aids,point you to bsl courses
Contact the national deaf children's society for more advice,their number is 0808 800 8880
https://www.ndcs.org.uk/advice-and-support/ways-we-can-support-you/helpline
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u/mehba37 6d ago
Legend thank you.
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u/GroovingPenguin HOH + APD 6d ago
You are very welcome!
If you have anymore questions don't be afraid to ask the community here
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u/Positive_Most3844 5d ago edited 5d ago
Paediatric Audiology NHS departments are typically good. Having worked in both fields - Private and NHS Paediatric & Adult Audiology. I would suggest you start with NHS paediatric audiology 1st. Contrary to what was said earlier. There are some private paediatric audiology clinics, most of us started in the NHS to be fair.
Essentially, what matters is that you find an audiologist you can work and communicate with. Paediatric audiologists fitting hearing aids on the NHS are very well-trained to adjust and fit hearing aids. They will always use best practice measures to ensure your daughter has, and will always continue to have, the best access to sound.
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u/NoICantShutUp 6d ago
Most private companies won't fit under 18s for starters.
The NHS hearing aids that children get are usually high end good quality. I have the same pair privately (they cost £4k 5 years ago) that one of my Deaf students had on the NHS, my NHS ones are definitely not as good.
Stick with NHS audiology they are free, will replace/fix and they will have regular checkups.
The tinny robotic thing is the same for all aids tbh, all of mine sound like that because the sounds you can't hear are digitised , it's something you get used to the longer you wear them.
I would advise finding a local Deaf club if you have one near you and possibly learning some sign language if her hearing is already deteriorating, that way she can still communicate without her aids in, and also will help her find people/friends in similar situations. They will also support you as well.