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Profound deafness - bilateral cochlear implants

17 replies

MrsSnaplegs · 28/01/2013 13:10

Regular on main boards but here with my work head onWink
Does anyone here have a hold with bilat cochlear implants? I am trying to provide support to a mother with a nearly 2 yo who has this but we are not in UK so trying to find online help
TIA
Mrs S Grin

OP posts:
MrsSnaplegs · 28/01/2013 13:10

Child not holdHmm

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TheNinjaGooseIsOnAMission · 28/01/2013 14:19

my dd3 is a hearing aid user rathan CI but I'd recommend the ndcs they support families in the UK nut it's a mine of information and the parent place forum has people who aren't UK based. There's plenty of groups on facebook and yahoo too.

TheNinjaGooseIsOnAMission · 28/01/2013 14:20

but not nut, must be the day for it Grin

CheeryCherry · 28/01/2013 14:30

Sense have a decent website and offer good contacts for profoundly deaf/ visually impaired.

geogteach · 28/01/2013 14:37

My DS (11) is waiting to have them. There is a charity in the UK called CICS, the woman who runs it is a mine of information, I have talked to her via phone and email a number of times. All the manufacturers have their own websites, the main ones are cochlear UK, Advanced Bionics and Med el. We have also had an assessment at the Ear Foundation in Nottingham and the are very helpful too.

MrsSnaplegs · 28/01/2013 16:33

Thank you I will have a look at those sites and pass details on to her
There doesn't seem to be any support locally or any other children here with CI and although I am medically biased in my job I don't have any experience personally or professionally so thought here would have someone with some knowledge.

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MrsSnaplegs · 28/01/2013 16:36

Sorry another question Smile
If we were to try and get some funding to provide adapted toys etc for the home what sort of thing should I be looking for ? Optic light sensory stuff or is there other things we can look at
Little boy is nearly 2

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geogteach · 28/01/2013 17:25

Not an expert by any means but I think you need to work on getting him to interpret the sounds that he hears through the implants. Depending on how much progress he has already made he needs to first react to sound, then obviously begin to recognise language and ultimately use language himself. My son already has language but I have had friends whose children have had implants as infants before they acquired language. I think the manufacturers have some tracks that you can download on their websites to practise listening through the implant but not sure what age they are aimed at. Here he would have input from a teacher of the deaf and possibly speech therapist does he have this sort of support, they would have more ideas.

BackforGood · 28/01/2013 17:53

Not a parent, (well, I am, but my dc don't have CI Grin), but I work with pre-schoolers with sp needs.
Whenever children have CIs in any of my caseload, the HI support staff always advise lots ond lots of telling them what a sound is, when it happens... "Oh, the doorbell just rang, I wonder who it is" ... I can hear a helicoptor, lets go and see if we can see it" ..... "I can hear Mummy walking down the stairs" type things, rather than specially adapted toys.... doing a 'commentary' on the day, as you do with a little baby, to just let them know what all the sounds they are hearing for the first time, are.

TheNinjaGooseIsOnAMission · 28/01/2013 19:55

I'm not really sure there are specially adapted toys, more a case of picking toys that may be interesting so things that will light up as they make a noise etc. We played lots of listening games where dd3 had to listen for a sound then post a brick in the shape sorter, say go and roll the ball to mummy, really good preparation for hearing tests too. If it's possible to get funding it might be worth looking into a radio aid, costly but you'd really need professional advice to see if it would be suitable. Do you have a sensory room locally?

2old2beamum · 28/01/2013 21:32

Hi my son 14 is profoundly deaf and blind due to pneumococcal meningitis @8 months old. As he was in care until 5yrs prior to adoption nobody really thought about him long term. However he now has 1 CI thankyou Manchester other ear too knackered for 2nd. He was post lingual at 8 years old but now can hear enviromental sounds. Our biggest problem is keeping his CI in place as his headrest on wheelchair keeps knocking the bloody thing off.
Sorry OP hijacking post

MrsSnaplegs · 29/01/2013 07:05

Right at work computer so can type responses properly Grin

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TheNinjaGooseIsOnAMission · 29/01/2013 07:46

proper sensory room kit is ridiculously expensive but there are plenty of guides online to making your own like this and sites like sensory toy warehouse are worth a look, they do deliver overseas as I'm sure other sites do. Disco balls can be a good place to start, christmas tree lights and you may be able to find small bubble tubes in novelty lighting type shops, there are often toys that will make a noise/light when they are rolled/hit etc.

don't forget the ndcs and their parent place, plenty of others there in the same position. It's very common to go through a grieving process when you find your child has additional needs, it really isn't easy. You sound like you're doing a fab job of supporting this lady, having someone that listens is very important Smile

MrsSnaplegs · 29/01/2013 19:19

Thanks Ninja Smile had a horrendous day at work so haven't had chance to look further yet - will be meeting up with her next week to look at the nursery.
Ideas about a "cheaper" version of sensory room is great - going to try to engage the "local" hospital for advice as they will eventually take on this child's care and would be good to et them involved early especially as he will be going to school here in a few years

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stringbean · 29/01/2013 21:35

My dd has bi-lateral CIs, although she had them sequentially (the first at 20 months and the second at age 7 - she's now 8). I would agree with the posts here about NDCS & CICS - both great sources of information and support. We had a fab teacher of the deaf (who still visits dd in school) who helped me make sense of it all. Yes, I did go through a grieving process - I think this is perfectly normal - but didn't talk to anyone professionally. Looking back on it, I wish I had.

My memories of dd in her pre-school/post-first-CI days was hours and hours sitting at the kitchen table, playing games, looking at books, reading, colouring, baking and all the while talking, talking, talking. At the table we were at the same level, so she was best placed to hear and lip-read. As someone else said, giving a running commentary - but allowing time for dd to respond and then mirroring language back to her.

The ToD used to bring along toys - not special ones for deaf children - but maybe something that would make a particular sound. We had a farm from ELC in which the animals all made noises and the tractor 'chugged'; a small shop when a bell rang when the door or cash register was opened; the ToD used to bring simple jigsaw puzzles or games too, just to reinforce language about colours or shapes or opposites or facial expressions or numbers, for example.

I think the main difference I found with dd was that she didn't 'pick up' language just from overhearing it. It all had to be 'fed in', hence the sessions at the kitchen table. It is hard work. Ultimately, the goal for your friend is for her son to learn to decipher the sounds he hears and to learn to speak. It is important therefore that his family talks to him a lot. 1:1 at nursery should also help. Dd has 1:1 support at school - she attends a mainstream school - and also had this at pre-school. Both environments are very noisy and the support has made a huge difference - she would really struggle without it.

We did lots of going out to everyday places - different shops, zoo, cafes, friends, soft play, school, pre-school etc - I'd take pictures at each place (people must have thought I was mad, photographing the supermarket!) so we could talk about them afterwards, and then use them to explain when we were going again. It's hard for deaf children to anticipate things as they don't always hear the 'we're going to see Granny' or whatever - I had a folder of photos of friends/family/places so I could show dd 'this is who we're going to see/what we're going to do now' so she had some sense of what would be happening during the day.

The above is just a trail of garbled thoughts, so I hope it makes some sense! But please do ask if you have any more questions.

hatchypom · 19/02/2013 14:39

I have 2 deaf children one with bilaterals, one waiting for surgery ask away !!! We found CICS great but have also done therapy through AV UK who have worked wonders. NDCS is a larger church. CICS have a good Facebook group as well as family events

hatchypom · 19/02/2013 14:42

Just noticed you're not in the UK, then try googling auditory verbal therapy as this is a method of teaching deaf children to use their CIs or hearing aids to their full potential

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