Hi all,

I thought I would post to basically get some advice from anyone whose children are deaf.

My son George is 4 weeks old and has now failed 3 hearing tests 1 of which being a different test to the normal ones. I have now been referred to a specialist hospital in London for diagnostic tests to see whats wrong but things are not looking good. I will also mention that he doesnt respond to sound around him.

I just basically want to know how you can deal with deafness, I also have a 2 year old and a 3 and a half year old and worried how this will affect them too.

I know nothing has been confirmed yet but I just wanted to get as much info as possible to prepare myself. On all tests there was absolutely no response from his ears so they know that something is wrong, its just a matter of finding out what now.

Any advice greatly recieved.

Thanks all xxx

There are several different roads you can go down. It depends on how hearing impaired your baby is. One option that might be offered if he is suitable is a cochlear implant whick would involve an operation to fit a device in his head and he would then wear a special hearing aid and a little back pack that is so descrete that it goes under the clothes. I think they do this operation at around the age of 2 but might be wrong. If thats not an option or you don't like the idea there is always the sign language route. It would be best to learn the signs now so you can sign basically straight away so he can learn it as his first language. There are different courses on sign language but after you have done level 1 and 2 training you should be fluent enough (I think there are 4 levels). There's an online course here: http://www.british-sign.co.uk/ Obviously it all depends on the outcome with your further tests before you need to make these decisions.

I don't have a child with hearing impairment but I worked with a girl that communicated through sign and I did an entry level course a few years ago.

Thank you so much for your reply. I think I will feel alittle bit more relaxed when we know how bad it is and what the options are.

I am definately going to be looking into the sign language and especially for my girls to learn too, They both watch mr tumbles and my eldest seems to pick up on some already.

Thanks again xx

The sign language used on Something Special is actually Makaton not BSL and although some/most signs are similar/the same there are major differences. Makaton was developed for people with special needs and only consists of around 600 signs whereas BSL is a recognised language.

Let me know how you get on xxx

hi i dont have a deaf child but i have suffered from glue ear. before my first set of grommets (at age 6 years) i could not resond to any sounds. though after 6 different sets of grommets my hearing is better i still sruggle ( its worst when i have a cold). i recomend sign lang' and lip reading( talk normaly, clearly and make sure that they can see your face clearly as faceal expressons help to understand what you are saying). i now relie on lip reading when my hearing drops (ie due to cold). dont worry about your two girls sign lang' or lip reading (should you choose to do this) will become just the same as talking. ( my older sister has always been fab with me and in a way i feel it has made me close to her). sorry i cant be any real help. i just thought that may story will help some how.x.

Thanks to both for replies.

Nic I didnt even realise it was a completely different method used on something special. I must admit mr tumbles does annoy me but the girls love him!

Faeriestar thanks for the advice, my brother had to have grommits as a child for glue ear and like you he is fine most of the time apart from when he is ill.

I ams still waiting for my appointment but it should be withing the next few weeks, I have to seemy doctor too as he now seems to cry when he yawns and they think this could be connected with his ears too.

Thanks again for the replies xx

madnbella+bluebump

I was wondering, what was the out come? Abi will be 4 weeks on sunday and has so far failed 2 tests, we have a more in depth test booked on the 9th October so we're hoping to know more by then.

She reacts to nothing! I've been told it could be the size of her ear canals, the probe doesn't fit so gets no readings or a mucus blockage, I'm hoping it's the mucus as that can be fixed. My dad and all his brother are half or completely deaf but it's all late onset (meniears)

I have ordered a few things as we were going to do baby sign language any way. I used a site called Chelltunes.co.uk.

Hi Lisa I thought I would reply on this one, I know you replied on the other topic too! I too was hoping it was blocked canels unfortunately for us it wasnt and he is completely deaf as it has affected his inner ear and will need the cochlear implant.

We have not any family history of deafness at all apart from my brother having glue ear as a child but have now been told that thats isnt connected. They will still be doing genetic testing but will also look into other causes as I had a difficult pregnancy and birth with him and they think that this could be the cause as he was starved of oxygen and had growth retardation in the womb from 35/36 weeks which went unnoticed by the doctors even though I was having regular scans due to extreme polyhydramnios!

You will have to let me know how you get on I am still in shock to be honest and going through so many emotions even though I had convinced myself this was going to be the outcome!

Thanks for the link to th site I will be looking into that. I have 2 girls already whom are 3 and a half and 2! I definately want to teach them young even though I have been told they will pick things up a lot quicker than me!!

Anyway I have rambled like I normally do!! You will have to let me know how Abbie gets on George is next at the hospital on the 13th and they will redo the tests and take the mould for his hearing aid.

I will just say quickly if they do all 3 tests there and then it takes a long while and is better for baby to be asleep and my arms went dead by the end of it keeping him asleep!

Good luck hun xxx

Thanks for the reply. I will let you know the outcome. I think I'll take her in her ringsling she sleeps well in it and I don't have to support her.

Lisa

one question though, before you found out did you notice your LO crying loads, less or about the same as a hearing baby?

Thank you
Lisa

George cries loads and just doesnt seem to settle whereas my girls always settled and slept! I always put it down to him just being a different baby and being clingy. But at the hospital they did say it could be where he becomes disorientated due to not hearing anything. He does seem to cry more if he doesnt see anyone or feel you close to him. At nighttimes we have had to resort to him being in bed with me as he wont settle any other way. I have now taken the side of his cot and put his bed at the same level as mine so he is next to me but still in his bed!

They have said when he has his hearing aids if they work he will become more disorientated of a nighttime when we take them of as he will hear little bits during the day but nothing again of a night.

Does Abbieseem different at settling to your other children? xx

she is different to the other 2 but because she settles alot easier! since the day she was born it's not been me talking to her that has settled her, it's when I have my hand on her tummy or stroking her face. She crys very little infact, she seems to be very contented. Maybe it is because she's so contented that nothing disturbs her, not even the loudest of noises, like my DH banging on a saucepan, she didn't even blink where as my ears were ringing (he's deperate to get some kind of reaction out of her)

My house is extremely noisy all the time and always thought that he just got used to the loudness of noise and dint respond. I used to lay him down when it was silent and click or clap my hands either side of his head and he never turned to see. I think I was quite sure somrthing was worng when we were blowing up balloons and he was next to me when one popped so loud me and everyone else jumped and he didnt flinch!

My husband convinced himself that he was responding to sound so it hit him a little harder whereas I knew deep down something was wrong was just shocked at how severe it actually is.
xxx

god, that sounds so like Abi!

Most of the time I'm fine and tell myself that everything is ok, and I hope that it is, but sometimes, esp when I'm on my own I start to think that maybe it won't be.

I'm such a slow learner that I'm worried if she is deaf I won't beable to learn sign language.

Some times when I'm talking to her I think why bother, I suppose thats one of the bad moments, and we haven't even had the tests yet, I don't what will be worse, not knowing or finding out.

and why oh why do they make you wait 3 weeks before doing the follow up tests?? It's giving me way too long to think about things!

it sounds terrible because I'm worrying that she could be and you have found out your little boy is deaf. All through your pregnancy your tested for all the disabilities but no one ever says to you, by the way, there's a teany tiny chance your baby will be born deaf or blind and we'll never know why for sure.

And all these tests they do when they are born, after 3 kids I still don't know for sure what the heal prick test is for, and the 'routien' hearing test, you take for granted that all will be fine, even after the first test has been failed, it was blamed on too much back ground noise, the second time, you could have heard a pin drop it was soooo quiet!!

sorry for rambling, but got to get it all out at some point!!:cry:

Dont worry about rambling I always struggle to find the right words and explain in writing so ends up being longer!!

I sound like you I havnt got a very good memory and not good at co-ordination I was never good at dance at school, so very scared about sign language. I talk to him and feel like why am i he cant hear! But its the facial expressions and makes the whole situation feel normal if thats the right word!!

I had to wait ages for the tests I had the first 3 done by 3/4 weeks and then had to wait til last week when he was 10 weeks to know for sure!!

I am suprised at the support you recieve though, I have been assigned a social worker type person who is also called the teacher of the deaf and he explains evrything clearer and gives loads of support he came round for the second time today and brought the speech and language development lady round too and she explained her role too! He will be coming with us to the hospital in 2 weeks today to give support and guide us through everything without too much medical rabble!

I keep thinking back to when he was first born and being relieved he was ok and thinking there was nothing wrong and like you just took the hearing test as standard and never imagined there to be a problem.

See lookI have rambled again!! xx

Hi,

I am new to the forum but thought that I would reply to this one. My son (adopted from Guatemala) is 8 years old and profoundly deaf. He has been fitted with a cochlear implant which helps enormously and attends mainstream school where he is doing well.

It is a huge shock when they are diagnosed and I can still remember how devastating the news was. Children are far more resilient than us, they just get on with it. There are of course, communication frustrations on both sides but that is common with hearing children too!! James uses total communication, speech and signing and it is my experience that most of his peer group are fascinated and want to learn signing also. He now has a younger sister who signs (and shouts) at him and is very protective.

The most difficult part I found was sleeping and this was before he was diagnosed. Once I put James into his cot at night and left the room he would freak and spend hours screaming and getting into a state. In hindsight I think it was the isolation because he could not hear any of the household sounds and I eventually overcame it by letting him sleep close to me. At 8 years old, he still goes through some challenging sleep patterns but I tend to go for the path of least resistance, happy mother, happy child!

I can honestly say that despite all the difficulties and there are many, James deafness has done more to enrich our lives than we could ever have imagined. We have made friends, shared experiences and learned so much that we would not have done had our lives taken a different path.

I wish you all the very best with the diagnosis and the future with your little bundle.