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Deaf children manchester

(27 Posts)
stig29 Tue 08-Jul-08 10:02:29

Hi there, do you have a deaf or hearing impaired child ? Has your baby just failed the newborn screening ? Are you hearing parents and never had any experience of deafness before ?
My ds was diagnosed profoundly deaf at 6 days old, although I have had lots of help and support from various organisations I thought it would be good to post this for any other mums out there going through the same thing and help each other through our own experiences.

bubblagirl Tue 08-Jul-08 16:13:43

bumping for you

stig29 Wed 09-Jul-08 16:06:06

cheers for the bump, just hope it helps someone x

geogteach Wed 09-Jul-08 16:07:38

Hi DS1 is deaf, we are in the south east, he was diagnosed at 3 (no new born screening then), he is now 7.

stig29 Thu 10-Jul-08 08:02:55

Did you have any idea he was going to be deaf ? or any experience of deafness before ? How's he doing now ?

geogteach Thu 10-Jul-08 13:38:18

My first suspicions were at around 2 but he had good speech so his presentation was unusual and suggests that he could hear in the past, his levels have continued to drop. He is currently severe / profound uses hearing aids and a radio aid, goes to mainstream school speech is completely normal and he has just got level 3's in his key stage one sats so doing brilliant grin

paranoidmummy Thu 10-Jul-08 16:26:08

my 12 week old ds failed the newborn screening and we are in the process of finding out the severity - his right ear is profound but they are unsure on left - mixed results. we are in essex tho. how old is your son? would u have any clues anything was wrong? i have an older ds (5) and can see no diff in how he was at this age!
this thread is just what i needed!!!thank you

lottiejenkins Thu 10-Jul-08 16:54:29

My ds is 12 today! he wasnt diagnosed[profoundly deaf] till he was two and a quarter. I get a lot of help from Parent Place on the NDCS website.. do you use that too?

geogteach Thu 10-Jul-08 17:28:34

Ds is 7, my first clue he was deaf was him saying 'pardon' alot. I agree parent place is great, I have forgotten my password so don't post but do read regularly

stig29 Fri 11-Jul-08 08:11:55

Hi paranoidmummy, my ds is now 10 weeks old, he also failed the newborn screening, at the time we just put it down to gunk in his ears from the birth. the hospital made us an appointment to see to audiology dept 6 days later. Those 6 days were tense to say the least. We were not aware of any history of deafness so didn't talk about it too much but both me and his dad kept trying tests on him each time the other other person went out of the room, we banged doors, clapped hands, shouted, banged pots all sorts and everytime he didnt respond we just reassured ourselves it would be fine, but if im honest i think deep down i knew. When it came to the hearing test and i heard the sounds getting louder and louder in his ears with no reponse from him at all i sat there crying. At the end of the test the audiologist just looked at me with an it will be ok kind of smile and that was it, i bawled and bawled and didnt stop crying for 3 days. Looking at him now he is no different to my dd when she was his age, so no I dont think i would no, other than not jumping at loud noises. Lottiejenkins is right get on the NDCS website, it is fantastic for info and to have a look at other parents experiences. Im sure there will be lots of threads on here now just like geogteach's to show that deaf children can do very well in life.

paranoidmummy Fri 11-Jul-08 09:14:22

stig, your story sounds very similar to mine.ds was born by c section, which they said accountedfor the initial fail (on my bay of 6 babies 3 of us failed!). we were then given an appt 6 weeks later. i spent the first fortnight worrying about it and then kind of put it to the back of my mind. i just assumed he would pass [blush} he seemed to wake up if a door slammed, if we shut the car boot etc. but it was obv a mixture of coincidence and vibrations!when he failed the oae again i wasn't TOO fussed... then they did the aabr initially they had put the wrong headphone over the right ear shock which relaxed me and made me think it would all be ok once they put the one with the actual sounds over it!i could hear the clicks and see their faces and knew what they were going to say they couldn't do the left ear that day as he woke up. i can honestly say that day was the most horrendous day of my life. i cried non stop for the next 24 hours, couldn't eat, threw up constantly and my milk just evaporated (thankfully conyinuing to feed allowed it to reestablish). we then spent the next week praying the left ear would be better. it appeared to be - responses at 40 - 50dB but further tests now show that it is more severe over lower frequencies . interestingly the right ear performed better in the lower frequencies hmm
we are due to get him aided in 5 weeks which terrifies me. we are having repeat tests before... not sure why but i feel i have to see it again to show myself i am doing the right thing. have u got a date for the aids?
how are you coping? i find we have practically gone back to normal but if i think about it too much i feel sick to the stomach and have to hold back the tears. i feel almost a grief for the baby that i thought i was going to have
it just all seems so unreal... if he's asleep in a room and i open a drawer he will wake up, if a dog barks he jumps, if i talk to him then he stills, if we're having playtime together he'll imitate every sound i make! its mad really!
i would be really interested to hear of other people's experiences with older children too. my biggest concern is whether he will be able to talk etc? have you been given much info on that kind of thing?
sorry for mammoth post - one handed as well as lo is feeding so may be many typos! its been cathartic to put it down on paper!

stig29 Fri 11-Jul-08 11:53:03

paranoid, everything you feel is normal, i too kind grieved, it was a 1o year age gap,when i had my dd i was just 20, being preggers was the worst thing that could happen and nobody was happy for me, this time round i had the pregnancy and birth that i wanted, the cooes over my bump a natural birth (had c sect with my first) but the news of his deafness took the shine off it for me, i looked at ds from a hearing persons point of view, all i could think was my poor baby lying in silence, but thats not the case, i see that now,he has never had hearing so its normal to him. ds results came back that he has sensori nueral deafness, poor sod deaf as a post up to 110 dbs in both ears, we had the sky man round and ds didnt bat an eyelid when he drilled a hole in the wall !! lol. i am now coping really well with it but thats because i have had such good support from the early support team, the best advice i can give you is to phone ndcs and register with them, have you been put in touch with an early response team ? if not ask for one ney demand one !! i have decided not to hold back the tears anymore, whats the point? they will always come back, just accept how youre feeling at that moment in time and you get over it better, theres a strength to be found in having a good cry and wollowing in self pity for a few hours/days, you will bounce back !! i have a weekly meeting with a deaf mentor she is profoundly deaf and has a cochlear implant, her speech is very very good. Have a look if there are any deaf centres in your area, the sooner you start meeting deaf people the better you will understand that your fears although very rational will slowly fade. ds had his hedaring aids at 4 weeks old, we are not sure if they are doing anything for him but his face is more animated with them. I wish i could tell you all my experiences in one post but would blow the system lol. has anyone spoken to you yet about a cochlear implant ? just remeber your lil boy is the same boy you walked into the room with you just have to work a bit harder as hes growing up. i will get a list of all the websites ive been on so you can have a look at them x

mamalino Fri 11-Jul-08 12:21:32

As a parent of children who are deaf it saddens me to read that people have such negative initial reactions to their children being deaf. This has been discussed at length on the NDCS site but I just wanted to present a different point of view for any parents of newly diagnosed children. I think with newborn screening there may be issues with post natal depression which make a diagnosis harder to deal with but that's a whole other subject!

I just wanted to make the point that children who are deaf are children first and deaf second. It shouldn't be the end of your world, they have not been diagnosed with a life threatening illness. I am grateful to have the experiences and knowledge which I wouldn't have gained without my childrens' deafness.

paranoidmummy Fri 11-Jul-08 13:41:26

all sounds so familiar stig! i got pregnant at 19 with ds1 and it was really not the right time - not with partner etc. this time around i am married, ds1 is nearly 5, we seem this perfect family etc etc. it came as a huge blow. i have had none of this early support you speak of?! going to contact audiology today. cochlear implants have been mentioned but not discussed as such. tbh we are very much in limbo at the moment. i take it you are in manchester? have u thought of going to any of the ndcs weekends? i'm keen but not sure dh is...
mamalino - i really don't mean to offend with my reaction to ds2's diagnosis and your post makes me feel much more positive. i totally agree that diagnosis this early may be mixed in with pnd and i certainly feel that i may exhibit certain symptoms of it which has been exacerbated by his hearing loss. i think i would have found it much easier to cope with if i had noticed things weren't right myself as he got older. it wouldn't have seemed such a big deal. may i ask a bit more about your children? are they aided etc? did they develop normal speech etc? i'm sorry to come across nosy but, at this stage, i am curious to find out as much as possible about other children with hearing loss

mamalino Fri 11-Jul-08 16:26:51

Paranoidmummy, no offence taken at all, just wanted to promote a positive view of deafness paticularly for parents of newly diagnosed children.

I have 3 DC, DD1 (7) has a moderate hearing loss, DD2 (5) is hearing and DS (3) has a profound loss, both diagnosed pretty much at birth. Both DC have great aids and DDs speech is great. Her vocab is comparable to hearing child, sometimes her pronunciation is a little hard to understand. DS uses sign and we are starting to recognise familiar sounds as speech. The important thing for us was giving him communication skills from the beginning. Both of them are happy and very endearing, they mix well with other children.

I think it's really important to pass a positive view of deafness to your children.

lottiejenkins Sat 12-Jul-08 09:41:05

I just got this link from The NDCS site looks interesting!

stig29 Sat 12-Jul-08 11:59:15

Hi mamalino, I agree with everything that you say, deafness shouldn't be the blow to new parents as it is at the moment and i think the more deafness is promoted into the wider community the less people will have these reactions. I myself am saddened by my own reaction when ds was diagnosed but not ashamed. I have decided to accept what I felt at the time and to move on, the more i have discovered deafness and met deaf people of all ages the more "accepting" it has become to me. Before I met with my deaf mentor I was terrified of how I would communicate with her, would I talk too loud, would I slow my speech, basically would I make an eejit out of myself !! but Jayne was great and after 10 minutes of being in her company her deafness was no longer an issue (her poor jokes and terrible sense of humour still are though wink
There is a petition at the moment to get the government to teach BSL in schools whether this will be optional or not Im not sure but I think it will go some way to teaching people from a young age that deafness isn't the disability it once was. I consider myself very lucky to have the early support that is given in manchester, they allowed me to wallow in self pity and fear for a day or two to come to terms with my own feelings and preconceptions and then just completely shattered them, they have shown me the positives that my fears although rational no longer apply, the way I feel about ds deafness now is totally positive, my fears have now gone onto knife and gang crime when he's older ( as any parent is ) I now have a sense of humour about his future just as i did with dd and that is all thanks to the natural approach from the support I have been given. I once asked his deaf mentor " how the hell do I teach him to ride a bike if he cant hear me?" (daft question I know) her response was..."you run..FAST!!" such a natural funny answer to a ridiculous question made me realise that I was putting too big a deal on ds deafness and to just see him as being the pain in the bum boy he will be !!

paranoidmummy Wed 16-Jul-08 10:03:04

thank you mamalino, its very interesting to hear from other people with deaf children. Have cochlear implants ever been discussed for your ds? i must admit i am pretty naive when it comes to them,how they work etc...

stig, i'm glad you are so positive. I feel like i am getting there but am still somewhat in denial!i find myself REALLY worrying about his speech. i am aalso petrified there may be other things wrong; we have been told he needs thyroid, kidney and liver checks plus an ecg... ecg is today. what worries me is that he has an actual health prob. have u had to have all these checks?

mamalino Fri 18-Jul-08 12:14:59

Paranoidmummy, we have decided against a cochlear implant for DS as we feel this is a decision he can make for himself when he is older. We feel it is natural for him to use sign language to communicate and whilst I am not anti implant per se, I feel sad that people seem to see them as a "cure" for deafness. I think they are presented to parents as the normal route to go down and people can be pressured into making a decision too quickly. It's a controversial topic.

Re the tests and ECG etc, I do remember feeling the same and being worried that the deafness was part of a syndrome and DCs would have other problems. We found out eventually it is a genetic hearing loss (Connexin 26) with nothing else associated with it. It's hard because results seem to take a long time but I would say just try and relax, get the tests over with. They are mainly just routine and to rule things out rather than looking for something IYSWIM.

geogteach Fri 18-Jul-08 12:29:37

I agree about the tests ,they seemed to go on for ever but most of the things they are looking for are very rare. The person who tested DS eyes must have been 60 and admitted he had never diagnosed anyone with the condition they were trying to rule out. You also need to be prepared for the fact that there may be no answer, we still don't know what caused DS's deafness and many of our friends don't either.
DS doesn't have CI as when he was younger he didn't qualify, now he probably does but he refuses to go for the tests, I wouldn't rule it out for the future as he may still loose more hearing. I do know a number of people who have had them and they are very successful. For us as a hearing family and with DS the only deaf child in his mainstream school sign has never seemed very relevant, but as he could already speak when we found out he was deaf it was not really a decision we needed to make.
There is another organisation called DELTA who specifically support the oral approach, we went on one of their weekends a few years ago which was very helpful.

Chickmama Tue 29-Jul-08 20:58:51

Sorry, this is a bit late as I've only just joined. Just wanted to say my son is nearly 2 & half now and is profoundly deaf. He was diagnosed at 3 weeks. I was stressed to start with as he had a few other needs too but as time has gone on it has been amazing. He communicates through sign & shouting (v LOUD!) but really does get his message across. He is a very happy little boy who mixes well with other children which was a big fear to start with. Along the way I must say I have met many very supportive Deaf Mums, Hearing Mums with Deaf babies,professionals working with
Deaf children and have been given loads of great advice but in the end it really does all come together and you know whatever decisions you make yourself are the right ones. I am sure it's the same for any 1st time Mom?
The reason I joined was to ask for help !! Any Mums got any advice at trying to keep a little fella in his own bed at night? We just switched from a cot? But as he can't hear it's not easy to leave him there awake but i know from past experience rocking him to sleep then slipping him in bed and sneaking off is not a good idea for the future?!

bigpolarbear Tue 29-Jul-08 21:31:32

Hi Chickmama, as a Dada to 3 DC's aged 7, 5 and 3, moderate loss, hearing and profound loss respectively, we used the same routine with all three. It was just bathtime then bed and they got used to it very quickly.
I understand what you mean about him lying on his own awake and when we put the youngest down I do feel a bit sad sometimes, but I know he's fine and we are just downstairs and he also knows this so..
Ours did get up a few times but we stuck to it and they were settled after a week or so. You could also try a nightlight if he doesn't like the dark, or maybe a favourite toy or something, ours have their blankiese, lol. I hope it all works out for you and he settles well.wink

bigpolarbear Tue 29-Jul-08 21:35:24

Blankiese, just realised that sounds odd, lol, it's what they call their fleecy blankets they like to snuggle!smile

QueenBhannae Wed 30-Jul-08 00:20:05

Hello everyone!
We have just had a dx of severe deafness for our 11month old and she gets her little pink hearing aids in a couple of weeks! She will look even gorgeous (if possible) with them in according to my older dd grin who is very excited about her getting them (pinkness related probably lol)
We already use makaton and pecs in our family so will continue to do so just in case she wants to pick it up although I was led to believe that with aids she will get most converation?

chickmama how about one of those night light shows?
[[ or this is cool and not babyish so will last.

I am in north west too grin

QueenBhannae Wed 30-Jul-08 00:21:14

sigh - I was trying to do two things at once and bodged the link sorry

here it is

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