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My sons lost hearing

5 replies

24601valjean · 15/08/2024 23:13

A few weeks ago we learned my 3 year old son has severe hearing loss in both ears.
He passed the hearing test at birth and has been such a healthy little boy, we noticed his speech was a bit garbled from the age of 2 and he was a loud kid always vocalising so loudly. He was picking up words and phrases and responding to requests and questions so we thought it was a speech and language issue, it sounded like he couldn’t make certain sounds, pronounced words strangely like his mouth was too full, also hasn’t picked up words, sentences or understanding questions like his sister did. Speech and language wanted a hearing test done first and lo and behold he had mild sloping to severe profound sensorial hearing loss in both ears.
We are distraught, so many questions, we are very early days, he will be given hearing aids next month with the audiologist. It’s taking until November to meet with the paediatric team to start investigating what has cause this.
in the mean time we have reached out to charity’s and started learning sign language. We were advised not to look into reasons why this has happened, I’m guessing because there are some nasty conditions and so far I haven't but November is so far away.

Is this it, will it get worse, is this part of something else, is he ok cognitively. This is all racing through our heads.
he also starts school next year, his sister just aced reception and I have seen how quickly children are expected to grasp reading and writing, he seems so so far off doing anything like that but I guess a lot can change in a year.
I love him so much, when we spend our days together everything seems normal as it was before and I can keep the thoughts away but the second he is down for the night it’s all I can think of.
i don’t think there are any questions in here, just a stream of consciousness.
any advice would be welcome

OP posts:
Violinist64 · 16/08/2024 00:00

What a terrible shock. You will be going through a form of grieving at the moment. I would suggest getting in touch with the National Deaf Children's Society. They will be able to advise you on all sorts of different questions that are buzzing round your head at the moment. They also liaise with schools.

Mehmeh22 · 16/08/2024 00:24

I would not assume sign language is the first option as I know people with profound hearing loss at an early age get on fine without it. It's quite isolating to learn sign language and would mean he may have to go to a special school to learn it too.

I am not saying don't learn it at all. But just think how well he has coped so far without it?

I know this sounds odd, but I did research about this on a small scale and it is amazing how deaf people cope with hearing loss. All is not lost. You are reeling right now. I am sorry to hear this happened.

hampsteadmum · 16/08/2024 00:46

It could be any number of things OP. EVAS (enlarged vestibular aqueducts syndrome) might be a possibility as it usually gets diagnosed at that age. An MRI would co firm this. Honestly though the cause doesn't matter.You may never find the cause. What matters is how you handle things and how your DS is supported.

Hearing aids will help and later you may consider cochlear implants that are life changing. Your DS will need SLT for a few years. You don't need to learn sign language. Your son will receive
LEA support, a statement of education needs (EHCP) a teacher of the deaf and subject to where you live your son may get funding for a dedicated teaching assistant or even tutors if he needs them. Trust me it will be OK.

Your head is spinning at the moment understandably, but it will be perfectly all right. Go to a National Deaf Children Society family weekend, speak with parents of older deaf kids in real life. And feel free to DM me.

hampsteadmum · 16/08/2024 00:50

Oh and to put your mind to rest there are kids with profound hearing loss at the top academic schools in this country e.g Westminster, at Oxbridge, Imperial, at magic circle law firms. (And I know them personally). Deafness /hearing impairment does not equate cognitive impairment.

Violinist64 · 16/08/2024 02:26

I would like to add to hampsteadmum's reassuring words. So many things have changed for the better when it comes to deafness. The technology in modern hearing aids is nothing short of miraculous and public awareness is so much better than it was in the past. There is better provision in schools, too. I also wondered about the possibility of cochlear implants. is true that deafness does not mean cognitive impairment for the vast majority. I have had hearing impairments for most of my life and have had a career as a professional classical musician.

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