Friend's baby is deaf

[Jenda]

Hello

Just wondered if anyone had any advice for me. My dear friends little baby boy has had his second lot of hearing tests today and they have been told he has severe hearing loss and is unlikely to be able to hear or talk, although they will try hearing aids when he is older.

I know and she knows that all that matters is that he is a healthy and happy baby, she has lost a baby before him and he is obviously very precious. But it is still sad, and of course a different life than what she would have imagined.

I am going to learn Makaton because i would like to be able to talk to him (i live with them at the moment so trying to be supportive)

Does anyone have any advice, any useful resources you have used, good things to say and not to say?

The National Deaf Childrens Society is a great place to get help. They run a lot of events for parents - we went to one as a family when our son was diagnosed with high frequency hearing loss, they were fab!

Try to get on a BSL course. Makaton is more for children who can hear but have other SN and communication problems, but BSL is a proper, recognised language.

And just be there for your friend. Be positive but don't trivialise her DS's problems. She's lucky to have a good friend like you.

as cwtch said, the ndcs are really good, they have a helpline and a parent forum that are good. Have a look to see if they have a newly diagnosed weekend running that your friend could get to, they are usually free and well worth going along to. Get your friend to give the helpline a ring, they have an audiologist who will call her back (she's not always immediately available) and go through any of the hearing test results and what they mean, it wouldn't be that common for a person with a severe hearing loss to have no speech at all.

I'd agree with ellen, BSL will be more useful than makaton, it's worth checking to see if the family can get the course at a reduced rate, some areas offer discounts for families with a deaf member.

your friend should also be referred to your local sensory impairment service, they can be found on your council site under education if she hasn't, you can usually self refer. She should be allocated a Teacher of the Deaf who will work with her and her ds, offer support and advice, they work with children from birth and ours has been absolutley fab.

take your friends lead, she may or may not want to talk about the dx, I'm sure you'll be fine, you sound a great friend.

Hi, my friend has a dd who was born with no hearing, my friend learnt to sign with her from a very early age but when she was 2 she was given hearing aids and had a Cochlear Implant, by the age of 3 her speach was quite clear (behind but undersatandable), she's now 7 and doing very well (no real problems). Dd1 also has a friend at school who has Cochlear Implant's and his speach is great and appart from the fact he wears hearing aids there are no other real problems. Theres so much that can be done.

The information she has been given is not correct. A severe loss does not mean no speech - there are some excellent hearing aids around and he should get lots of benefit from them. If he is taught sign, ultimately it will be BSL, not Makaton, although for a baby Makaton is fine.
My dd is now 5. She was born profoundly Deaf and got hearing aids at 6 weeks. It has not all been easy, but it has all been worth it.

Thanks so much for replies. I wasn't sure on difference between BSL and Makaton so thanks for clearing it up. I can't believe you can't learn it for free when you have a child with hearing loss. A friend of mine has paid thousands to qualify in BSL so i will ask her to teach me.

You're right, I will take her lead. I will also read up on the NDCS as recommend it and suggest she looks there when she feels up to it. I had moved out for a while to give her time to bond so am not sure what frame of mind she is in. She is going to be a fab Mum and I am sure she will do everything to make his life easier!

Thanks again

Not sure who told them that a severe loss means no speech. This is not true and very wrong. The vast majority of children even with profound loss can develop normal speech as long as they have the right amplification. Before thinking about signing, please make sure your friend has all the information to hand. My dd was diagnosed with a profound hearing loss ( worse than severe) and now speaks as well as her peers. She has 2 cochlear implants that bypass the bits that don't work in her ears.

I am saddened when I hear parents told that as most of the time it's just not true and if they want a child to grow up with spoken communication as their first language it is possible.

I don't want to come across as anti signing it just that the vast majority of deaf children are born into hearing families.

My dd was 24 months by the time she finally heard anything useful. We follow something called auditory verbal therapy.

Hello. I think they just want to start learning BSL so that if the hearing aids don't work for him they are able to use it to communicate with him. Its really great to hear how the implants worked for your DD and I will pass that on to them. They're just at the stage of wanting to get as much info as possible and don't want to rule anything out. He has also got to have more tests to see if anything else if going on as they do wonder if he has problems beyond hearing loss.

Im not sure if they were definitely told he would have no speech, i imagine she took the worst scenario because she is a bit upset at the moment, but also very positive and open to hearing great stories like yours. Thank you

I was a bit concerned that you've said your friend will consider hearing aids when her son is older - your friend should aim to get him aided ASAP. My dd was born deaf and had hearing aids fitted at 9 weeks. You friend needs to be referred to a teacher of the deaf who can start to visit and support her by providing info about options. As others have said, it's very unlikely your friend's ds will have no hearing or speech at all and there is a lot of support out there for parents of deaf/hearing impaired children.

FWIW my dd is now 7 and has a cochlear implant - she's in mainstream school and doing really well. She also signs - largely because the hearing aids had no effect at all early on, so it was our only means of communication (contrary to what I've said above, her hearing is pretty much non-existent) - but this is really to supplement her hearing with the CI, especially at the end of a school day when she's tired, or in noisy environments, as her speech & language is age appropriate.

The NDCS is very helpful, and they also run courses for parents of newly-diagnosed deaf children, so your friend might want to consider this. In the meantime she just needs to take it one day at a time; I recall the early days as pretty bewildering. Good luck to your friend - she's very lucky to have someone like you.