Here are some suggested organisations that offer expert advice on SN.
Cochlear implants anyone?(16 Posts)
Our dd is now 9 months old and was diagnosed with a moderate hearing loss at birth - I posted about this at the time on MN. She was fitted with digital hearing aids at 11 weeks, but neither dh nor I ever felt they helped her, despite having them turned up a couple of times. Since she was 5 mo we've struggled to keep them in - they're pulled out almost as soon as they're put in, and I've found the whole thing quite negative. We've been for further hearing tests recently, and got no response from dd at quite loud levels, with the result that her moderate deafness is probably a severe - profound deafness. She's going to be fitted with a body-worn hearing aid tomorrow (more powerful), although I don't hold my breath for any response; I get my hopes up at each visit we have to the audiologist, only to have them dashed each time. Meanwhile she has been referred for cochlear implant assessment.
I'm feeling quite isolated at the moment, although we have a wonderful teacher for the deaf who visits, and without whom I would be really stuck (our HV is rubbish). Someone commented recently after I'd discussed dd's deafness with her that she feels almost guilty that her children do not have any problems, so I'm getting to the stage where I'm finding it hard to talk to people about it for fear they think I'm moaning or trying to make them feel bad (which is not the case!). Part of me feels I should be at home with dd spending time signing with her ( I work 3 days a week); we have a 3.5 yo ds as well who is great, but monopolises me when I am at home, so dd never gets much attention really.
Just wondering if anyone else out there has experience of cochlear implant and can give us a few more pointers as to what the assessment process involves? Has anyone's child actually been implanted? If so, what sort of effort does it involve on your part to help them learn to talk? (Just idly wondering if I should reduce my hours at work if necessary - or even stop altogether). Any comments or experiences would be gratefully received. Many thanks.
I don't have any experience of this, but other special needs, and ime having someone to talk to in the same position is invaluable. Have you googled for any deaf specific internet support groups. Or do you live near any schools for the deaf- they may welcome you to a school run support group?
Thanks Jimjams. Unfortunately, the primary schools for the deaf are some distance away from us - we fall into an area between two centres, both about 30 miles away. One does have regular baby/toddler groups, but the times mean its too far for me to go on the day ds is at pre-school and get back in time to collect him. This is another reason for me considering giving up work (but then I wouldn't have any transport to get there anyway - oh moan!!). Another place close by runs special needs sessions (on a day I'm at work) but not sure if this is suitable, as many of the children have communication problems, and dd needs good communicators to act as role models. Again, maybe this is something any parents of children with CIs can advise on.
My only experience in this field is as a research scientist not as a clinician, and all my contacts date back to the early nineties, so will have been superseded.
But I think the Cochlear Implanted Children's Support group is what you need. The paediatric department at the RNTNE (Royal National Throat Nose and Ear Hospital) are also a good source of contacts in various parts of the country.
If you google < 'Cochlear implants' children> should bring up stuff intended for patients and parents; <'Cochlear implants' paediatric> will bring up the hard sciency stuff.
A friend's DD was left profoundly deaf followig meningitis at 2. She had a cochlear implant done at about 3.5 and now she's 6.5 is speaking normally and at mainstream school. Before the implant she had ordinary aids - I think they have to get used to wearing them as they have to wear an aid with the implant.
She's progressed from having to wear a backpack with the processor in to having it all contained within the hearing aid itself. It's been truly amazing to see her progress from having no speech to normal speech.
I think my friend has internet/email access - would you like me to pass your email address onto her or ask if she has any good support ideas?
IIRC, the only "problems" are that she can't go on plastic slides or anywhere there is a build up of static as this can screw up the processor (just have to switch it off), obviously she can't wear it swimming and she can just turn it off if she doesn't want to listen. I think metal detectors at airports etc are an issue too because there's a magnet in her head to hold the contact thingy on.
Thanks for your posts. Soupy, if your friend has any suggestions, I'd love to hear them - its great to know her dd is doing well. LOL at the bit about plastic slides, as we've recently been given a slide and climbing frame for ds, with the hope that dd may use it in future - or maybe not! Frogs, your link was really helpful, and I've contacted the Elizabeth Foundation today; they don't run baby sessions on a day I'm free, but are going to see if they can do something to help. Dd's teacher is also going to put me in touch with someone local whose dd has recently been implanted. Think I'm just finding it all a bit overwhelming at the moment.....
From what I remember, it's a hugely scarey thing to decide go ahead with so it's hardly surprising that it's overwhelming.
She'll be able to use the slide btw, you just have to turn off the processor
Hello Stringbean hun,
Please don't isolate yourself from your friends, it doesn't come across as moaning at all. It's a horrible feeling (isolation)and a difficult time for you and your DH trying to find a way through all of this and to feel confident in your decisions on behalf of your gorgeous sweety of a daughter.
It sounds as if we need to get together sometime rather soon and if at all possible have a glass (or 2!) of the old vino. Alternatively, perhaps window retail therapy (if you get my drift): "One eyelid flickers, she whips the plastic from her knickers"!!! (Though even these days it has all too often been hastily put back, before those cash registers get to ring!)
With any luck Stringbean, if you are who I very much think it is, you should recognise who I am. Hope that you're not cross with me for that BUT....though I haven't got much immediate knowledge of CIs I'm there to LISTEN as any good friend should.
Big big big hugs
xxxx Midgemouse xxxx
Thanks Feffi - I hadn't seen the BCIG website.
We've now received the first round of info from our nearest cochlear implant centre, so will await an appointment. Another hearing test last week with stronger aids again elicited no response and we now have to face the fact that dd is at least severely if not profoundly deaf.
Midgemouse, you are a dear friend with enough on your plate at the moment. Bless you!
Hiya stringbean, a friend of mine has a young dd who has had cochlear implants, and says they are amazing. She wrote an article about it describing her dd's face when she heard the doorbell or the phone for the first time I will get a copy for you and will direct her onto mumsnet so you can have a chat with her - in the meantime if there's anything you would like me to ask her just give me a shout
Where are you in the country ??
My DH was implanted two years ago and it has been brill. I only ask because we are going to a picnic, in August which is a mix of implantees and those awaiting implant.
There are always plenty of implanted children, so if needs be I could try and wangle invites.
Hi Stringbean. My DS(5) doesn't have a CI but was assessed twice for one at the RNTNE. He wears hearing aids and has good speech but still a lot of trouble understanding in noisy background.
I see the main places have been mentioned already: CICS (Tricia is lovely, give her a ring and she'll put you in touch with parents of other children with a CI, you can then talk on the phone and meet up and see the kids with a CI), NDCS, BCIG. A very good source of info is www.listen-up.org and it also has an email group. There's also Reverb-UK on yahoogroups (I set this one up with another mum) for discussions about hearing loss. There's another website you can find with "auditory-verbal Oxford".
DS was at nursery as I was working full-time. I had sleepless nights over whether I should give up work altogether or cut my hours. I can honestly say, 5 years down the line, that when I meet other deaf children you wouldn't be able to say whose mum worked full-time and whose stayed at home. It takes a lot of time and committment to help them learn to talk, especially at the beginning to help them learn to listen.
My best advice would be for you to keep an open mind and meet as many deaf children as possible (e.g. through CICS or your local NDCS branch). For us at the beginning one of the most useful encounters was with a deaf child who wasn't doing so well and we were so determined that we'd put in whatever effort was necessary and do whatever it takes for DS not to be in that situation.
If you want to talk about it, please feel free to contact me.
To add that DS is deaf enough for a CI (90-110 dB) but is making excellent use of the hearing aids, which is why he's been rejected so far.
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