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6m DD diagnosed as severely deaf - can anyone help?

(18 Posts)
Murphee Tue 28-Nov-06 09:18:45

My lovely friend's lovely daughter has recently been diagnosed as severely deaf and will have hearing aids for the rest of her life. Although she is only 6 months they already have a speech therapist visiting her twice a week. My friend is English but lives in Naples (married to an Italian)and feels very isolated - she has been forced to give up work and has no support network. They have another DD-4yrs and my friend feels guilty that she is unable to give her older DD enough attention. There are no clinics or patient/parent groups where she lives and originally the Italian doctors told her the bilingual household would be a problem. At this point her husband agreed to move to England where there would be more support but following a visit to Great Ormond Street where the specialist contradicted this he has changed his mind - bad for my friend and the strain is showing on the relationship. Purpose of this message is to (a) see if there are any MNers with experience of deafness who might be able to offer advice; (b) see if there are any MNers in Italy, especially Naples? My friend will have internet at home within two weeks - meanwhile I am receiving messages for her. THANK YOU!

geekgrrl Tue 28-Nov-06 09:30:22

Hi Murphee,

my 5.5 year old dd has a moderate hearing loss (bad enough to stop her from ever learning to talk if it was unaided), she also has Down's syndrome so it's a bit of a double whammy.
She has had the correct hearing aid for her type of loss since earlier this year (she has to have a bone-implanted one so it all took rather long) and has made so much progress, she's on to 2 word sentences now which is great. We're also a bilingual household (I speak German to the children, dh is English and we live in England), and she is coping fine with that, she understands German just as well as English and says a few German words.

I met a girl recently who had just had a cochlear implant done at 14, and was taking GCSE French & German - she was obviously coping with learning these languages at school, so I would think/hope that someone learning at home could cope too.

There is so much ignorance when it comes to bilingualism - I recommend joining the NDCS (www.ndcs.org.uk) and phoning their helpline - they're very knowledgable and helpful.

moondog Tue 28-Nov-06 09:47:05

Murphee,hi.
I am a speech and language therapist but not one with specialism in this area I hasten to add.
There are an awful lot of decisions to be made here with regards to accesssing support,cochlear implants (I presume it is a sensori-neural hearing loss?) whether or not to use sign language and so on.

Your friend needs expert support and fast.

The bilingual issue is an important one.
Generally speaking this is to be encouraged.
Without Italian this little girl is arguably even more disadvantaged.
Her ability to master a spoken language both receptively and expressively depends on the extent of her hearing loss and the manner in which she is educated.

As a trilingual myself (Welsh,English,French) I can tell you some very sad stories in the not too distant past of children who were sent away from Wales to be educated through the medium of English in places for hearing impaired children and who came home unable to speak Welsh with their families.

Is your friend coming home soon?
It may be worth her paying for aone off appt with a specialist speech and lang.therapist to talk through the options.
Ideally it would be someone who is either bilingual or has extensive experience of bilinguals with hearing impairment.
Iwill link up the official list of approved salts.

Also worth remembering that someone who uses sign language and speaks is also considered bilingual as something like British Sign Language is as sophisticated as any other language.

She also needs to know that if they decide to use a sign language,then they will all differ somewhat according to each country,just as any other language does.

Interestingly even intra country,sign language will have different 'accents' (ie slightly different hand shapes) depending on where it is used.

LGJ (MNer) has a dh who had a sensori-neural hearing loss diagnosed as an adult and he went on to have a cochlear implant.
Look out for her.She has many positive and useful things to say.

Also post this in Parenting and Specail Needs so you get a greater response.

Will get that link up...

moondog Tue 28-Nov-06 09:47:46

Ah,great that geekgirl is along.

moondog Tue 28-Nov-06 09:50:47

Here you go

moondog Tue 28-Nov-06 09:52:01

Brill that they already have salt support twice a week btw.

Murphee Tue 28-Nov-06 10:12:07

Thank you both for all your really useful advice. I have to go out now but will be checking MN this afternoon and calling my friend after that.

lorina Tue 28-Nov-06 10:27:23

murphee my ds is deaf ,but wasnt diagnosed as early as your friends baby. I think the earlier you know the more positive the outlook.

But what I really wanted to say was it is the single most helpful thing is that she has given up work. My ds is a teenager now (using digital aids and a radio mic system) and he has flourished. He is a very high acheiver in a mainstream school and speaks to a fairly high standard.He is confident ,happy and has a good circle of hearing friends. I am convinced that that is the product of me giving up my life for several years to support him intensively.

Murphee Tue 28-Nov-06 20:52:29

bump

morningpaper Tue 28-Nov-06 21:05:55

well I have some very random thoughts

My dd is 4 and at her private nursery there is a boy who is deaf

As a result of this, much of their day's 'work' is taught in sign-language and all the children have learnt it

The boy also has a lot of one-to-one time with the staff - they are not paid extra for this, the nursery is just very understanding. This is a large, national chain but their response seems amazingly positive to me

I went into one of the younger classes recently (2-3 year olds) and they were having a silent session, taught purely in sign language

The primary school that my dd will be attending is on the same site as the school for the deaf/hard of hearing and many of their lessons are integrated

I was brought up with a lot of deaf/hard of hearing children because my parents did a lot of voluntary work with them, but then (30 years ago) things seemed very separated - my daughter's experience has already shown me that things are much more integrated now in some areas, which is fantastic

With the right support (and choosing the right area to live in) your friend's daughter should have the same chances for living a successful and independent life as a child who has no hearing loss

I have worked with people who have been deaf and I must say that being in IT it was really easy - MSN all round the office made integration into the team very smooth

One chap caused problems though because he was horrendously good looking and always wore tight shirts and no doubt picked up quite clearly on my non-verbal signals of MY GOD! every time he turned up at my desk

disgressing here sorry

stringbean Tue 28-Nov-06 22:32:48

Hi Murphee

I'm sorry to hear your friend is having a hard time. My dd is 2 years old and is profoundly deaf. She was identified at birth and fitted with hearing aids, which made no difference (she was initially thought to have a moderate loss). The hearing aids drove me MAD - always falling off and whistling incessantly, getting caught on the buggy, carseats, hats, dd would grab them and put them in her mouth. I found the whole thing really stressful, and would imagine this is getting your friend down (how many times a day did I cut toupee tape to stick them back on? 20? 50?). Dd got no benefit from the aids, and no response to hearing tests at all, and finally had a cochlear implant in the summer, aged 20 months; she is now making fantastic progress, getting very noisy and babbling a great deal. We have signed with her since she was tiny and, as a result she has a huge signing vocabulary and can sign 2-3 word sentences to us - which is age appropriate - and can understand much more. I would like her to keep up the signing if possible, even as she acquires speech. Cochlear implants are not a 'cure' for deafness, rather a sophisticated hearing aid, so we want to encourage both verbal and non-verbal forms of communication. To this end, I have just started a BSL course to help expand both my and dd's (and the rest of the family's) vocabulary.

In terms of support in the UK, we have a teacher of the deaf who visits us regularly. Our teacher is fantastic, but I have heard reports from other parents that their teachers are less than helpful. We also have support from a ToD and speech therapist at the implant centre, as well as a local speech therapist. We have a lot of family close by, and that helps as much as anything (especially as it means our ds, who is 5 and hearing, gets plenty of attention from grandparents etc., and it's helpful to have someone he can stay with when we're attending appointments for dd). Sounds like your friend has good support in terms of speech therapy - can the therapist not put your friend in touch with other parents of deaf children?

Tbh, I don't really attend any groups for parents with deaf children at the moment - I work part-time - although I'm planning to make enquiries soon, as much for advice on schooling and statementing as anything else. I would also recommend the NDCS - www.ndcs.org.uk - they have a really helpful section called Parent Place where you can post for advice/support. Dd has plenty of friends, all of whom are hearing, so she has lots of good role models for speech which is important in any language. She just enjoys doing all the normal things that 2 year olds enjoy - the only difference is that she can't hear or speak as well as her peers. Yet.

I can completely understand how your friend feels at not giving her older child enough attention. I felt much the same with my ds, and used to take my frustration out on him; I used to snap at him easily - still do sometimes - and have less patience with him. I'd then feel guilty that I was horrible to him, as well as guilty that maybe I'd done something when I was pregnant to cause dd's deafness (which I didn't - it was just 'one of those things'). I used to try and set aside time specifically for ds - at lunchtime when dd was asleep - to do things just with him, or we'd arrange time together at the weekend - nothing special , just playing a game he wanted, or knocking a football about. We've always been very open about dd's deafness, and have encouraged ds to sign with her - which he's really good at - and to come to some of her appointments, so he can see what happens and feel more involved. He's just started school, so it's less of a problem now.

Looking back, when dd was 6 months old, I still felt pretty shell-shocked about the whole 'deaf' thing. I didn't know anyone who is deaf, none of my family is deaf, and it seemed like a bewildering new world to be in. Two years on, and dd communicates so well, has a great personality and sense of humour, can point out and comment on so many things - all of it non-verbal. The verbal bit will follow - she'll get there in the end - but it's such a delight to see her blossoming in the meantime. Her life will present more challenges, undoubtedly, but no reason why she should not live a full and independent life.

Best of luck to your friend. Do get her to post on here or the NDCS website; she will find a lot of support in both places.

Murphee Wed 29-Nov-06 10:25:25

Thank you all very much! Frustratingly I went out on Monday night and lost my diary with my friends number in so now I'm frantically trying to think of ways to get it from another source as I've promised to call her back by Thursday. One way or another I'll get hold of her and suggest she joins MN asap.

kokeshi Wed 29-Nov-06 11:36:42

Hi Murphee,
I recently suffered Acquired Profound Hearing Loss over a matter of weeks. Although they can diagnose it as sensorineural deafness, they will probably never find a reason why. I'm still in shock, and really feel for your friend. At least I had 30 years of hearing.

I've been put forward for a cochlear implant assessment, and I believe there have been some amazing results with profoundly deaf children, if they are impanted at the age where speech develops. So I think there may be hope for your friend's daughter yet.

I'm still on a huge learning curve at the moment myself so I hope your friend gets all tghe help and support she needs. You're a good friend. kx

Murphee Fri 01-Dec-06 18:14:48

Finally got the number in Italy again and have just spoken to my friend. I read to her all of your posts and she was overwhelmed and tearful that you all took the time to reply so THANK YOU ALL VERY MUCH. We will be speaking again over the weekend when I hope she will have an internet connection and can log on to MN herself. Meanwhile, if anyone has further thoughts I would love to hear them. Mx

nat31 Thu 27-Aug-09 16:55:56

one of my twin daughter's is deaf and she had a cochlear implant at 1 and 1/2 year she has come on quite a lot in the last year and i am so proud but i still feel that even though she hAS HAD THE COCHLEAR THAT SHE STILL NEEDS TO KNOW SIGN LANGUAGE (BSL) as my brother is deaf also but beside that there are going to be alot of times when she can't use her implant, ie swimming running, jumping and in other active play as it falls of so easily. the only thing i am struggling with is the fact that eva will hit her head on the floor when she doesn't gat what she wants and also she is very devious in going back to places on the house she is not aloud to be in .....ie sweet cupboard........yes i do keep moving the place too! she has found moving chairs and every other accessory to get her higher places to get onto the kitchen surface easy to move. help

ohjustgrowup Thu 27-Aug-09 17:07:45

My ds is 4 and profoundly deaf. He was implanted at 2 and half and is making good progress. We are thinking of having a second implant now.

I agree with Nat, though and he is at a deaf school where he is learning British Sign Language as well as receiving S&L therapy as we feel it is important for him to be able to communicate in all circumstances.

DS loves him implant and is now putting it on himself and replacing it when it falls off (which is does quite often).

The NDCS have been a great help to us and I would recommend she looks at their website and maybe orders some materials from there.

If your friend wants to explore cochlear implants then this may be of interest.

hatchypom Wed 02-Sep-09 11:28:58

Hi
My DD is 2 and a half and is profoundly deaf. She recently had a cochlear implant and the change is amazing. If your friend is serious about implant then there is a really good yahoo group called CI circle, there are quite a few mums on there with CI children in Italy (its mainly US but there are people from all over). I have an older son and we try and divide and conquer. We individually spend time with both children and have also involved the older one in all the SLT we've done with the little, as a result its him that comes running in when she's learnt a new word or often he translates for strangers !. Your friend should also look into Auditory Verbal therapy which is a specialist speech and language therapy (there are some practioners in Italy - not sure where).

scottishmummyofone Wed 02-Sep-09 13:47:02

hi there

I am deaf. I went to university and have a good job so please dont worry.

It's great that the baby is getting speech therapy, I don't think things would be much different here regarding support although the bilingualism would make things hard.

Its important to face the child as much as possible when speaking.

I have been deaf since birth so the baby will probably teach itself to lipread like I did. I was 7 before anyone realised I was deaf, I lipread that well

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