Here some suggested organisations that offer expert advice on SN.
Baby with hearing loss please help(22 Posts)
Hello ds was diagnosed with moderate hearing loss in December. I'm only now getting my head around it all and am desperately looking for a comprehensive book on paediatric hearing loss for further information. I have read the ndcs publications but am looking for something more detailed. DH and I are both health professionals in unrelated fields so want to read up more in depth on his needs.
Any recommendations would be greatly appreciated. Thank you
Which sort of needs do you mean?
My dc have ASD & various other bits, but there is a lot of hearing impairment in the family.
The existence of a politically/socially/linguistically active Deaf community had a huge impact on how I feel about disability issues, and in understanding that good communication is about so much more than just clear speech.
This helped me to see that own my dc (and probably me, too, because the genetic apple didn't fall very far from the tree...) are "different, but not in a bad way" and having limited patience with those who patronise them, discriminate, or accept them only when they pretend to be neurotypical.
Two profoundly deaf DCs here. Are you looking at conductive hearing loss, sensori-neural, or both? Neo-natal screening, or later dx?
I can dig out some more detailed stuff on etiology, but the key questions about needs & outcomes are all the ones that MeirAya has posed above, and many of these questions have answers that go beyond the medical model of disability.
Stay strong & ask anything
Thank you for your replies.
MeirAya - I hadn't thought that far. I guess what I'm really looking for is further information on hearing in general ie the how hearing works, how things can go wrong etc and also further information on hearing loss generally. I was looking at some basic textbooks aimed at audiology students but as they are so expensive didn't want to fork out over £50 for something unless I knew it was worth it - if that makes sense.
In terms of the needs you mention I guess everything! I think the problem is that hearing is something i know nothing about and at the moment it all feels like a foreign language!
Yes I completely agree with your comments re disability. It was genetic for us too - dh we're assuming but still undergoing testing. I'm lucky in that I work with people who would be classed disabled so have a different perspective. Unfortunately we've already experienced the negative side of this from friends/family
Ugger - he has moderate sensory neural hearing loss. He failed his newborn screening but as he had an infection we weren't concerned at the time. He was diagnosed at just over 4mo as he had poor sleep so testing took a really long time.
Your replies have got me thinking about what it is I want to know as right now feel completely lost with everything I've been told. I understand what his needs are right now and have no trouble accepting the diagnosis but am finding it hard to get my head around the different terminology, anatomy of the ear, how hearing works, and also the long term impact and needs eg learning sign language, communications needs etc
I guess my thinking around this started when completing his dla forms with ds hearing teacher and the detailed discussion of his needs. I had a lightbulb moment when she explained that ds needs eg v poor sleep could be a result of his hearing and made me realise how little I know
Sorry this is so long, I'm writing as I think
Apply it sounds like what you need to know isn't going to be buried deep in page 857 of Katz's Handbook of Clinical Audiology. You need to chat to other parents of deaf children - people who've walked in your shoes a bit - and you need time to come to terms with it. It took me 9-12 months, it took my best mate 3 months, but it takes as long as it takes.
Tbh, the NDCS leaflets have pretty much all the audiological information you need to help your DS right now. On the clinical side of things, knowing why DS is deaf will help a bit - it'll help to find out whether his hearing loss is likely to be stable over time, or variable.
If DS has a stable moderate hearing loss, then the outcomes for him are likely to be pretty good. And I mean that pretty broadly: with the right long-term support (family, educational, audiological), there will be very little that he won't be capable of achieving.
I can't promise that getting and securing that support will be easy - and it sounds like you're already starting to work out who your real friends & family are - but I can promise you that you have it within yourself to do it.
Oops, pressed send too soon. Here's what I would do if I was in your shoes again:
- Get yourself, DH & DS on one of the NDCS weekends for families of deaf children under 2 years old. These weekends are great - lots of practical information, a chance to meet other families in the same boat as you, and a place to meet some friendly, inspiring deaf adults.
- Do you know any other parents of deaf children locally? If not, then if you have a teacher of the deaf visiting, ask her/him if they can put you in touch with people. It was a lifeline for me when I was struggling early on. It helps a lot with the day-to-day stresses - the professionals don't have much that's helpful to say when your little bugger has chewed his hearing aid moulds to pieces for the third time.
- The only real experts on DS are you & DH. Ignore well-meaning people who think deafness can be cured after having seen a couple of YouTube clips of magical cochlear implant switch-ons. Screen out the competitive grief athletes who wrongly think deafness is a tragedy, and want a piece of it. Keep your distance from people who offend you (whether by accident, or by malice). It takes time to develop a thick skin about disability - if they're worth it, then you can always get back in touch with them later on.
- Just concentrate on the here and now, one day at a time. Getting to know DS, getting him to know you. Just keep talking, just keep signing if you want to. Cementing DS's desire to communicate is what matters, and this is something you'd be doing with a 7 month old baby in any case.
I agree that in time you will become an expert on your ds' particular type and presentation of hearing loss.
The information you seek on stuff like sleeping, babbling style, volume control, sensory seeking behaviours, all those "oh another parent mentioned that" that you'll get from time to time from your ToD, those bits of information you won't find particularly well documented in books or journals unless they have case samples.
That stuff will come from other parents you meet.
For that I'd recommend the NDCS newly identified weekend, and also going along to an regional DCS get together.
Hi all, sorry for disappearing off the face of the earth . We've just moved and has been a bit of a nightmare, especially with DS who hasn't coped well at all.
I just wanted to thank you for your replies I really appreciate the time taken to offer advice on your experiences. I've taken onboard your comments and booked myself and DH onto an NDCS newly identified weekend which we are looking forward to attending. I don't have a ToD yet as we've just moved but I'm saving my questions for them. I've ordered lots of ndcs publications which have answered my many questions and even answered the ones I hadn't thought to ask / consider yet!
Yes definitely to the getting my head round things Ugger - it's been 5 months and I'm only now starting to be able to process it all/look at things sensibly rather than panicking over it all feeling completely lost. Your kind words have helped as has the advice to trust in my instincts of knowing my son. We've had lots of unhelpful comments, especially of the ignoring it type where people rapidly DGPs have tried to brush it under the carpet, accuse me of being pfb if I acknowledge his needs eg by explaining his poor sleep, or why he can't hear one person screeching when 10 people are all screeching at him!
It's really helped to hear your experiences to guess I just really want to say thank you for taking the time out to offer advice
I'm sorry to hear the move was stressful for you and ds.
How are you feeling about the hearing loss now?
Gps will come around eventually, I left a couple of Ndcs publications on the coffee table and left it at that, it will take them a bit longer than you because they're not experiencing it first hand on a daily basis.
If you look on you county council webpage they will have details of HVSS (hearing and vision support services), if you make ds known to them they will allocate a advisory teacher (ToD).
No problem Apply keep asking, whenever you need to - and if you need to come here to vent / rant, that's good too.
YY to what frusso said above about GPs - it does take them a bit longer, and sometimes GPs can be a bit off with you because they simply don't what the hell to do to help with it all, and it scares them. If they're good people, then they'll be worried about you, DH & DS all at the same time.
Don't worry about their feelings - you've got enough on your plate - but sometimes the twattery comes from a good place, iyswim? And if one or two of them don't end up working out how to deal with it, then it's very much their loss...
mum with 2 profoundly deaf children here. The NDCS is a good source of information and they have certainly broadened their information to include signing and oral approaches more equally (my 2 are both totally oral). The newly diagnosed weekends can be good lots of information so worth taking a pen and paper. there's also a separate NDCS chat room and lots of different groups on facebook depending on your area and diagnosis. Generally audiology can be patchy, have you been given hearing aids yet ? You should get a TOD contact within days of calling them. We used a charity called AV UK to help our kids listen and talk worth having a read of their website, they've got lots of experience with really little babies (we saw them with my son just after he was born). Their advice was invaluable.
My mum is a ToD so over the years I have absorbed a fair bit of information - I know she often recommended the information from 'listen, learn and talk' Its Aural-Oral based but some useful, practical ideas. www.google.co.uk/search?q=listen+learn+and+talk&oq=listen&aqs=chrome.1.69i57j69i59j69i65j69i60.2320j0j4&sourceid=chrome&ie=UTF-8
If you would like to learn more about deafness and hearing loss the CochlearHope webinars are very informative and free hope.cochlearamericas.com/online-courses
They do have a Aural-Oral slant so may not be too useful if you are going down a pure BSL signing route.
Hope this helps
Thank you all for taking the time out to reply. I'm sorry for not replying sooner
I'm getting to grips with things now and feeling a lot calmer about everything - diagnosis, long-term Impact etc
Frusso - have taken your advice and left ndcs publications lying around for family, encouraged them to join/take home to read. Hasn't made an impact yet but maybe soon, who knows
Thank you for advice on tod referrals, were awaiting allocation now and hoping to hear from someone soon
Ugger - yes that's exactly it. I've tried my best I hope to include everyone. I think I expected them to feel the way I do and it hasn't happened. I've had to rethink my approach and be a bit blunt re including family and making his needs known eg by sharing his dla form. There's been no reaction yet but watch this space I guess
Iwill- thank you for sharing your story, it's really means a lot to hear from others. Yes we have phonak hearing aids bilaterally
We took some advice offered to us on this thread and have used the ndcs for publications/booking onto a weekend which is later on this year. I've found their resources really helpful and whilst I wanted more info initially m, actually once I read them I found it was exactly what I needed
We were actually recommended the avuk by a friend and have an appointment soon. It's great to hear that you found it so beneficial
Martha - yes the links definitely help, thank you so much for sending them.
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