Parents of children with partial hearing loss. How do you cope?

[uberalice]

DS1 is nearly four and is deaf in one ear. Hearing in his "good" ear is sometimes normal, but he has frequent bouts of glue ear which reduce his hearing levels even further, and this fluctuates from day to day. Despite this, his speech is very good and he seems to be coping well with nursery. He is a very sociable and confident little chap.

His behaviour is no better or worse than any other child's I've met of his age. He's a lively, boisterous little boy who likes pushing his boundaries and driving his parents up the wall. If I ask him to put his shoes on, I'll need to repeat it half a dozen times, and in the end I lose my temper and start shouting . I know that 3 year olds tend to ignore what they're being told at the best of times but I feel so guilty that I'm so impatient with him given that his hearing isn't good.

A few months ago I was diagnosed with depression and I'm taking ADs and going for counselling. Things have improved enormously since then, and in general I'm OK - much calmer and more patient. But I still lose my temper sometimes (once every few days, or so) then I feel horribly guilty afterwards.

I'm wondering whether I've been underestimating how much his hearing loss has been part of the problem, and I'm hoping that by focusing on this more, I might be able to find some more patience which will help us all through this. I feel like the worst mum in the world sometimes, and I desperately want to pull myself together.

I'd love to hear from other parents who are in the same boat. Does anyone else have similar experiences to share?

My son is a older than your son. He is six years old and has a mild hearing loss in both ears and has hearing aids in both ears. My son has recently had a perforated ear drum in his right ear. We thought that my son hearing loss was due to glue ear, but our GP is adamant that there is no glue ear and my son's hearing seems to be as bad as ever. I am worried that scarring in both ears from previous perforations has left my son with a permament hearing loss and we do not see audiology until May.

The emotions of finding out that your child has a hearing loss is hard. Its hard not to feel guilty.

Have you tried posting on the National Deaf Children's Society bullitin board. Its good to get support from those who do understand. I have never plucked up courage to go, but the NDCS do arrange events for parents with deaf children to meet up.

Thanks so much for replying, ReallyTired. I hope you get some answers soon. I know how worrying it is to wait for endless tests and appointments.

Was your son born with a hearing loss? How does he cope with it from day-to-day? We've only recently told our son about his deafness and it's not really caused any major problems for him so far, just my own inability to cope with the added pressures sometimes.

Thanks for the tip about the NDCS bulletin board - I will check it out. I did contact them a couple of years ago and went along to one of their events. It was nice to chat to other parents of deaf children, but I did come away from the event feeling that somehow their issues were slightly different from mine - all the people I spoke to had children who were profoundly deaf. Perhaps I will contact them again.

Hi uberlice, my ds2 has glue ear and a senorineural hearing loss. He is also 4 years old.

He is severely deaf in one ear and mild/moderate in the ear. Again his hearing changes according to the amount of glue etc.

For our ds it has severely impacted on his speech and language development although he does sign so this has helped alot.

I think it is very difficult to deal with a hearing loss, I have a seven year old ds who wears glasses all of the time and whilst I was a little sad for him to begin with I know that the glasses enable him to see clearly. Whereas for ds2 he hears things differently to everyone else even with his aids iyswim.

I'm sorry that you find it difficult sometimes but I confess I frequently feel impatient with my ds for not listening/ hearing me. I also think it can be quite difficult to tell if it's because he's not heard me (so I shouldn't be impatient) or just because he is being 4yrs old and ignoring me,(in which case I'm allowed to be a bit cross with him!). I'm often the mum that has to leave the room to take a few deep breaths!

Reallytired- has your ds had an ABR hearing test done under sedation or GA? For us it was this test that was able to determine exactly what type of hearing loss he had.

My son was born with perfect hearing. His hearing was damaged by a series of severe ear infections. Our GP has a policy of prescribing anti biotics for ear infections. This has meant that my son has suffered 6 perforations to his right ear and 3 perforations to his left ear. Prehaps I should have shouted at my GP more for refusing to prescribe anti biotics. I don't know.

My son is doing well at school. He has digital hearing aids his classroom has a soundfield system. He is extremely good at lipread and has plenty of friends. He is lucky in that he has good speech.

He is in a completely different position to a child who was born deaf. His hearing has got worst and he knows it. He remembers what it was like to have perfect hearing. It would be nice for him to meet other children who are hard of hearing and wear hearing aids.

My son has had a bone conduction test and his cochelar is in perfect conditon. His hearing loss is purerly conductive. Its much easier to do a complex hearing test on a year old than a four year old.

His hearing loss is caused by damage to the ear drum from multiple perforations.

Reallytired, my ds2 was also born with perfect hearing,(at least he always passed his hearing tests as a baby) but he also had alot of infections including perforated eardrums and pnuemonia.

I also feel that it is due to these infections etc that damaged his hearing although ENT tell me it's almost impossible to get an accurate test on a baby so I guess I'll never really know for sure.

It must be especially hard for your ds if he knows his hearing isn't as good as it was, but great to hear he is doing well at school, I hope I will be able to say the same thing about ds2 when he starts school in September!

Hi I am in a similar position. DS1 (7 next week) was diagnosed at 3.5. His hearing has continued to deteriorate, at that stage he was coping well with nursery and pre school and able to hear me speak. He now has hearing aids and a radio aid, he hears well with these but hears nothing without. His lip reading is excellent, speech and language normal. I think it is important for him to know other deaf kids, we go to our local NDCS events and he has made 2 friends who are also deaf which is important to him. It does take a bit of effort, we felt at first that everyone else was in a different position as they signed or had cochlear implants but with perserverence we have met others in simalar positions to ourselves and he is going to his first national deaf childrens event in a couple of weeks.

cazcaz, it's a relief to hear that other parents lose their patience too. Perhaps I need to remember to take a few deep breaths myself.

geogteach, thanks for sharing your experiences of NDCS events. I think I'll get back in touch with them get more involved.

ReallyTired, I'm so sorry you had such a hard time with your GP. It can't help you to be wondering if the problem could have been prevented.

Do any of you have any strategies for coping with the hearing loss? I've started touching ds's cheek with my hand to get his attention when I want to talk to him, and I do make an effort to speak clearly. I also ask him if he's heard what I said, but often it just starts to sound like I'm hassling him. Perhaps there are other things I could be doing.

It's hard for me to separate the problems caused by his hearing loss from the normal problems encountered when parenting a young child.

Strageries that have helped us to think about lighting conditions in the room. For example if you have a shadow across your face its very hard for someone to lip read.

It does not help your child to shout because its distorts lipreading patterns. Its easier to have a conservation with your child in a room where there is plenty of furnishings rather than a room that has lots of hard surfaces like a kitchen or a bathroom.

It does get easier when a child gets older as they develop their own strageries.

For us it is making sure he can see us clearly, (although hadn't thought about shadows across the face - thanks for that one reallytired.)and because he is only four and his speech is so hugely affected,(forgot to say he has a sub mucus cleft palate as well)makaton sign language.

Tbh the times I find it most difficult are when we are out of the house. His road safety and personal safety awareness are shocking! This has been particularly bad during the winter months with hats and hoods being on as he can hear me and the traffic even less.

I take comfort in the fact that it gets easier as they get older.

One thing I have seen used where there are groups of deaf people is flashing the lights to get everyones attention. The other tip I would give is have the subtitles on the telly, this has helped DS concentration no end and we started when he was in the very early stages of learning to read and he now uses them all the time. A neck loop can be good for hearing stuff on the pc - I was sick of being deafened when he was on it. Other technology has included a vibrating alarm clock and amplified phone (this is the least successful, talking on the phone is definately not his strong point.)

This is all useful stuff, many thanks.

I think it's fair to say that I've not really been thinking of my him as a deaf person - it's not that I forget or anything, but just that the hearing that he does have serves him quite well, considering. He can't read yet, but I think it will make a huge difference when he does learn.

I do worry about road safety too. Because he can only hear from one side, he doesn't know where sounds are coming from so crossing roads, etc will be a challenge as he gets older.

There is and there isn't a sharp line between Deaf and Hearing. (both with a capital on purpose)

My son is not Deaf, but he is partially deaf (with a little d). It all depends what you mean by the term deaf. My son is definately hard of hearing, but he manages well with his hearing aids and speech good English. He is able to socialise with other children of his age with normal hearing.

There are children at the school I work at who first language is BSL. They have little or no useful hearing, even with hearing aids. They have been deaf from birth and are party of the Deaf community. They have their own language, culture and an almost ethnic like identity.

My father in law is profoundly deaf, however he lost his hearing after he had aquired English. My father in law depends on lipreading rather than learning BSL. Even though his hearing levels are worst than many BSL speakers, he will never be part of the Deaf community.

There is a huge debate within the Deaf community about cochelar implants because many Deaf people don't want their culture to die out.

I am partially deaf .... and I would say it is much more of a problem for those around me than it is for me - and that was certainly the case as a child when I didn't even know there was a problem.

However, I sympathise with my mother and with you ... it is bad enough as a mother of children with normal hearing when they ignore me (as the 6 year old repeatedly does) without having to factor in the possibility that he might not actually have heard.

Crossing roads - no problem at all when at the right age for learning to cross roads - eyes are far more important than ears. Clearly at younger ages you have to be vigilant but I think this applies equally to all children regardless of hearing levels.

Don't stand in front of a window when talking to him. When I'm in a group of people I try to sit myself in front of the window so everyone else has the light from the window on their faces.

Subtitles on the television a good idea. It's often forgotten that a lot of deaf/hard of hearing people are actually not that tolerant of loud noises so keeping the volume level at a normal level and putting the subtitles on is what I usually do.

Hi again, ReallyTired, I see your point about Deaf and partially deaf. My ds is not Deaf. I was meaning that whilst I never forget his hearing loss, it's not in the forefront of my mind, and perhaps it should be a bit more. If he was Deaf, I would have to adapt to deal with all the problems that that would entail, and it wouldn't be very reasonable to get annoyed with him for ignoring me. But because his hearing fluctuates so much, it's difficult for me to know how much he's not hearing and how much he's just ignorning me.

Today his hearing was worse than usual, and just by taking care to remind myself that he has a hearing loss, I found it much easier to be patient with him.

robinia, thanks for your advice. It is very reassuring to learn that crossing roads needn't be a problem. I have a friend who is partially deaf and she's often said it can be advantageous in some ways. I always assumed she was just saying this to make me feel better about ds's problem.

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Its OK not be a perfect mother. My son's hearing levels are all over the place and seemed particularly bad today. He even chose to wear his hearing aids today. Normally its quite a challenge to get him to wear his hearing aids.

My worries about my son's hearing is whether it interferes with his school work. A lot of hearing impaired children find literacy very difficult. My son is also useless at following verbal instructions.

So much also depends on the child's teacher. In the Autumn term my son had a complete and utter witch. The horrid woman said at parents' evening "In my professional opinon, your son does not have a hearing problem, he has a listening problem." My answer to her was that our in NHS audiologist's professional opinon my son had mild to moderate hearing loss and his digital hearing aids are not jewelary. Thank gawd this teacher left after one term and my son now has a lovely teacher.

I feel protective towards my son. I worry about other people's prejudice.

Hi DoodleToYou, lol at selective hearing. I sometimes ask my ds if he wants a biscuit if I'm not sure how well he's hearing. He never ignores that question deliberately!

ReallyTired, what an awful cow of a teacher. In fact, hearing loss causes a listening problem, because it's so tiring to concentrate for long periods when you can't hear properly. I think I feel more protective towards my ds aswell. In fact, I'm less protective of his brother in some ways despite the fact he's much younger. Never really thought about that before.

Ah...this looks like a thread I need.

Will check in and catch up later.

VVVQV, are you coming back?

oops! This dropped off my last so-many-threads-in-72-hours list.

Had letter confirming yesterday that she has 30 decibell loss in low tones, and 50-60 decibell loss at the higher end of the scale. Reading it in those terms makes it seem so much worse .

She keep clamping her hands over her ears at loud noises though which is throwing me.

And I'm still finding myself irritated or annoyed when she gets uptight because she cant hear

gonna take some getting used to I think.....

At least the clinic have written to her school now. I've been waiting AGES for senco to get involved with her.

My son's hearing loss is a different pattern, his right ear has a loss of 50 db at very low and very high frequencies, but is mostly 30 db. His left ear is much better and is mostly a 25 to 30 db loss.

She probably doesn't like loud noises because it makes it harder to hear what she wants to hear. My son gets angry when the tap in the bathroom is running and he wants a conservation.

Has she been issued with hearing aids yet?