Deaf child.

[nubby26]

I found out my child is deaf if both ears 6 months after she was born. She was in hospital for 6 months due to being early and having complications.

She got fitted hearing aids but they don't do nothing and she's currently being reviewed for cochlear implants but needs mri scan to confirm if she's eligible for them.

I can't help but just feel so upset though. I didn't really think about it much before as I was just grateful that she was alive. but now I always think about how she can't hear me and if she ever will be able to, do I make her feel loved even though she can't hear me, do I do enough for her I've never had a deaf family member so I don't really know what to do. I'm really struggling mentally with it all now because I just feel so guilty like I don't do enough or I don't make her feel loved. She is the happiest little baby but can't help but just think the worst. Anyone got any advice on what to do if you have a deaf child please as I don't know what to do. Sorry about lost post but I needed to just vent and get it off my chest.

PLEASE get in touch with NDCS (National Deaf Children's Society).

They are brilliant.
They even have weekends away where parents can meet with other parents of deaf children.
Honestly, you will get so much support.

I'm a British sign language interpreter and I echo what PP has said. Contact the NDCS and have a look online for local deaf organisations in your area that may run parent and baby/toddler groups and youth groups.

The most important thing you can do for your daughter is to start learning BSL now. NDCS will be able to help with classes or one to one lessons for you and baby as the traditional classes (level one BSL, level two BSL, and so on) are not useful to parents with young children looking to learn sign language for every day use. I would recommend doing level one, two and hopefully beyond when you're ready. But for now just focus on learning signs for every day use with baby.

Please also involve her (and yourself and family) in the deaf community. She needs to be around language models who are fluent in sign language and it will benefit your learning too and do wonders for her self esteem as she grows up.

Second this, I have worked with the deaf community for over 10 years. My best advice learn BSL and teach your child xx

Just like to add, the deaf community have their own amazing culture! BSL is a really beautiful language

Thankyou all for your replies! Will deffo have a look.

Both my DC (now young adults) are deaf with cochlear implants. One working, one at uni.

NDCS definitely, and ask them to put you in touch with your local Deaf Children's Society where you can meet other families.

Happy to answer any questions. I know it's worrying and it's definitely not always easy but I promise your DC will be fine and live a happy, fulfilled life.

I think the NDCS is free to join? I know they have lots of events on in our area

That's so nice to hear :) I'm really hopeful she's able to have them. did your children need mri to see if they had a nerve in their ear aswell? If they did, did you get results the same day or did you have to wait?

Yes MRI is standard part of the assessment process. We didn't get results the same day, we just got a final outcome once all the assessments were complete (although this was 17/18 years ago so may have changed since then!)

Thankyou so much for your reply! So helpful to know. How was the surgery and how was they afterwards? Did cochlear implants work straight away or was it something that worked gradually? Sorry for all the questions 😂

Cochlea implants are amazing

CIs only help a child hear while they are wearing it, but if you are in a noisy place they may struggle to hear you and if they don't have them on they won't hear at all,vso signing is really important. They also don't work overnight , it takes a long time to learn to hear and so don't expect a magic fix.
Level 1 is not helpful for use with babies though is better than nothing, but speak to your QTOD (teacher of the Deaf) about local opportunities to learn child appropriate sign.

I have a deaf daughter, she’s 8 now. She was born deaf, but not diagnosed till she was 1. She got cochlear implants at 18 months and is doing really well with them. Her speech is amazing, she is doing really well at school, she does hobbies like brownies, synchronised swimming and dancing. Lots of good friends, she’s a sassy and independent little thing!

We started signing with her as soon as she was diagnosed which helped massively. She was signing back really quickly. It also gave her a language framework for when she got the implants, and she started responding to sounds and talking really soon after getting them (a matter of weeks).

All the above sounds great, and it is, but behind the scenes her dad and I have worked really hard to ensure she’s well supported and has access to everything she needs. She has an EHCP for school, and she has a 1:1 TA to support her, she has funding from the council for 1:1 swimming lessons, she has a radio aid, we’ve organised deaf awareness training for school and extra curricular activities. We did BSL levels 1 & 2 (which is pricey, and shouldn’t be - whole other rant!)

Don’t freak out - your child is amazing and will go far with you on her side. First things to do would be contact the NDCS, also the Cochlear Implant Children’s Support Group (CICS), who are a parent led support group and really helpful (they also run trips to theme parks each year which we love!) Join some Facebook groups - Unofficial NDCS, Parents of Children with Cochlear Implants, etc - you can get some good advice there. If you’d like to PM me any questions I’d be happy to answer.

In the news last week there was a story about a little girl whose deafness was “cured” by gene therapy. She has the exact same genetic cause of deafness as my daughter. I showed my daughter and she said she wouldn’t want that because she loves being deaf! I wouldn’t change her for the world either. It’s been a hard journey, and there’ll be loads more challenges I’m sure, but honestly it’s also been amazing. I’ve met so many great people in the deaf community, other parents of deaf kids, it’s given me a whole new perspective… I’m so lucky to have had her exactly the way she is.

Sending lots of love to you, I know it’s a tough time x

Hi OP! My mum could have written your post, 30 years ago.

I was born profoundly deaf in both ears. I wore hearing aids until I was 18, and decided to have a cochlear implant at 18. I am fluent in sign language and speak well too.

First off - it is so scary, but the Deaf community are absolutley fantastic. I have seen so many people isolate their child from the Deaf community and this leads to feelings of isolation and confusion, as they feel they don't fit with either the Deaf or the hearing world. Please try and make sure you allow your child to meet other Deaf children. NDCS and RAD put on lots of wonderful events for children - I have many fond memories growing up and having fun with other Deaf kids- many of which I am still friends with.

2 - whatever you choose to do regarding hearing aids/cochlear implants - it is wholly your choice. Medical professionals will push for a cochlear implant but do be aware they don't always work, and it is a major surgery.

1. Learn sign language. I absolutely cannot stress this enough. Your child will benefit massively from having exposure to speech AND sign. Some councils will fund free classes for parents. .

1. Schooling - it is early, but try and find schools with a deaf unit. This will allow the child to have support for their deafness (hearing aid/cochlear checks, speech therapy, smaller classes if needed, etc), but also gives them the opportunity to mix with hearing peers. I went to a school with a deaf unit but was put into mainstream classes with an interpreter which was best for me.

1. It really isn't the end of the world. Your child will grow up knowing your love, knowing how hard you worked for them. They will be able to communicate with you via sign language and/or speech. As a family, you will adjust. Many deaf people, myself included, go on to be very successful. I currently work in the NHS at a high banding, am married, with a baby on the way! ❤️

Best of luck OP and I am happy to answer any questions! X

How was the surgery and how was they afterwards? Did cochlear implants work straight away or was it something that worked gradually? Sorry for all the questions

It is important to understand a few things about cochlear implants as parents often latch onto them as a cure for deafness which they are not. I have worked with many deaf children over the years who have been given bilateral implants and have no speech and no exposure to sign language. They end up with language deprivation and a whole host of issues as a result of this.

Please understand, I am not trying to frighten you. I just want you to understand the reality of CIs because the medical community will push for them and it's important to know the following:

-Cochlear implants are not a cure for deafness
-Not all children are candidates for CIs
-Not all children who get CIs go on to have success with them
-People who wear CIs do not hear things in the same way that hearing people do, although the technology is improving over the years
-Not everyone who wears a CI hears the same way as each other. Some hear better than others. Some still struggle to understand speech but feel they are beneficial to hear environmental noises etc. CI use is a spectrum as much as hearing and deafness is a spectrum
-CIs do not "work" straight away. Your child must wear hearing aids for a period first until they are old enough for surgery. After the surgery there is a period of time of healing before the initial "switch on". This is why you need to learn sign language and use it with them because in this waiting period deaf children are having no exposure to language which is detrimental to their development.

You may find the medical community telling you not to sign to your child as "they'll never learn to speak if you do". Ignore this a thousand times over. Sign to your child. Doctors are wiser to the evidence now that signing is the native language of all deaf children. CI or not, their brains are wired differently from the womb as they don't have access to sound. They need sign language. However, you do still see remnants of the old Oralist thinking in some doctors. They are quite frankly misinformed about the rights of deaf children.

If deaf children have success with CIs they can choose their preferred mode of communication later in life. If you don't expose them to sign language the consequences can be devastating. But if you sign to them they will have been given a head start during the crucial "language window" of their development, they will feel at home in both the hearing and deaf communities, and they can access the support of interpreters if CIs don't give them access to speech sounds.

I have worked as an interpreter for years and I see a change in the community now. More of the younger generation have cochlear implants and also use sign language fluently. Their parents are giving them the best of both worlds. I have also seen my share of children with two cochlear implants and parents who think they have done their best for them but their children fall far behind their peers at school because they cannot hear like their peers.

For every thriving child with CIs there are children struggling at school who cannot catch up. Please give your child every tool you can. Learn British sign language and involve her in the deaf community where she can mix with native BSL users.

All the best OP xx

As someone who has cochlear implants I can tell you the earlier she gets them the better able she can develop speech and keep up with her peers.
You almost definitely will get push back for 'denying deaf culture'. Ignore those people. If you want to learn BSL, go ahead and learn but I personally wouldn't rely on BSL alone. In combination with implants, your daughter can be a part of both the hearing and deaf communities.

Even with CI do learn bsl, sooner you start the better. It's really easy to pick up some basics. I'm far from fluent but I have used it many times including in emergency situations where it's really helped. Both my dc know bsl to a certain degree too, not a deaf family but have deaf friends.