Baby with hearing impairment london
Aga86 · 23/05/2018 21:43
Our baby has been diagnosed with moderate hearing loss. Wondering if there is anyone in London who is in the same situation and wouldn't mind to meet up. Looking for some advise and support. Thanks!
ScreamingValenta · 23/05/2018 21:47
Hi @Aga86. I've no advice but bumping thread in the hope you get some! Newbies' Corner doesn't get much traffic, so if you don't receive any helpful responses, perhaps try the Chat topic instead.
goodtime · 23/05/2018 21:49
Hi I'm in Hertfordshire if you are north London. Dd is 4 also with moderate loss.
Muddlingalongalone · 23/05/2018 21:50
My dd2 is 3.5 now but happy to answer questions as best I can. She failed the newborn screening and has had hearing aids since she was 4 months old.
Have you been in contact with NDCS? They run courses for parents of newly diagnosed hearing impaired children.
goodtime · 23/05/2018 22:02
Definitely do the Ndcs newly diagnosed course, it was really helpful.
If you are on Facebook this group is good too m.facebook.com/groups/1687943484799253
Muddlingalongalone · 23/05/2018 22:09
Thanks @goodtime - just joined. Always looking for additional sources of help/support
Aga86 · 24/05/2018 01:27
Thanks everyone for reacting on my thread! Yes, we are exploring info and events on nfcs and other local groups. Also wanted to search through this portal since we’re a little bit lost. Our first child is 3 yo and perfectly fine, 2nd born with hearing impairment which came as a huge shock, he is 4 weeks now are we’re waiting for 2nd audiology test. While we’re still trying to cope with such news we also want to start preparing asap for all the changes we will have to go through. So was looking to hear real stories of london based parents..i.e.practical tips for the 1st year of life, experience in nurseries/ schools, balancing with work life, other helpful checks/therapies aside from audiology including private mdical route... and tons of other questions. We are based in SE london, happy to travel to central london other close by areas or even phone chat will be helpful.
goodtime · 24/05/2018 08:12
These are my suggestions
- Try not to panic, I will never forget sitting in the car after the test thinking this was a disaster and that I broke my baby. four years down the line I am much more positive.
2. Make contact with your teacher of the deaf ASAP. Audiology should do this but if you google your borough and local offer hearing impaired you should find some info. If that doesn't work the Ndcs will have a local family support officer who will know what's available.
3. Try and find out if there's a local playgroup. In the early days this is mostly to help you. Some of our best family friends are from our hearing group.
4. Do all the normal things you want to with your new baby. I did swimming, music etc. There will be quite a few appointments so dont exhaust yourself but at the same time you don't have to isolate yourself.
5. It is perfectly ok to be shocked, devastated, hate the aids etc, there is a bereavement of sorts for the baby you expected. As you already have a dc you will know the baby you thought you would have never quite appears anyway! As soon as I realised that it didn't change how much I loved dd i started to move on.
6. Nurseries etc are very local but good acoustics and experience are great. However my friends and I have come across people who are happy to help and my dad has enjoyed nursery a lot and is off to mainstream school in September.
I am sorry if that sounds horrendously bossy, I'm on the app and find I don't write well. I will try and pm you my number later.
Aga86 · 24/05/2018 11:33
Thanks so much for the tips and encouragement! Appreciate if you share your number, I promise I won’t bombard you with texts/calls. :-)
Hbf2222 · 07/08/2018 08:23
Hi aga86. My baby was born in May and also diagnosed with moderate hearing loss. We have just started with hearing aids. We are also SE London and have a 2yo with normal hearing. Would love to meet. I’ll DM you.
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