Extraordinary Teens: Matter of Life and Deaf

[purpleme12]

Did anyone watch this?

I thought it was a lovely programme. Gave you some insight into what their life is like.
And I did feel really proud and pleased for Lewis in the end.

Why can some deaf people speak normally and some can't? Is it just in direct correlation with how good they can hear?

[kateclarke]

I loved this too. I was surprised that the school seemed to discourage signing.

I loved Lewis and hope he does well.

[TheDrsDocMartens]

A lot of speech depends on hearing /copying/learning from a young age.

Haven’t watched this yet but plan to this afternoon.

[haveacupoftea]

My son is deaf and I loved this programme. It isn't possible to show in one hour the physical and emotional struggles that come with not being able to hear but they did a really good job.

Fluency in speech and sign often depends on when the hearing loss was diagnosed. With the newborn hearing screening babies are diagnosed with hearing loss that previously wouldn't have been picked up until the age of 2 or 3 or even later when speech wasn't developing properly. There is a window of speech development in the early years during which a child must be aided to hear or their speech may be affected for life. There are other factors too, like the cause of the hearing loss, how often they attend speech therapy and how much time their parents have spent developing hearing and speech with them.

The school encourages pupils to use hearing and speech because at some point the kids will have to join the hearing world for work and everyday life and these skills need to be well developed to make this doable.

[Tory1981]

Yes I did and it was amazing. My daughter attends Mary Hare and has done since she was 6years old.
It portrayed how difficult life can be for a deaf child and how they try to intergrate into the hearing world.
What they hear has a huge impact on speech, but even when they hear something they have to be taught how to listen. It takes years but it’s fantastic what technology can do now!!

[purpleme12]

I did wonder how much they could all hear? Those twins seemed to manage fine when you watched them. I mean I'm guessing they didn't in reality otherwise they wouldn't go to the school. But was it just the lip reading they were going on? Or could they hear a bit? And that one who was going for head boy too? Forgive me if this is showing how much I don't know.

[haveacupoftea]

@purpleme12 technology is fantastic and you could see from Lewis's audiogram that he could hear around 30dB at all frequencies after he got his implant so he could hear all speech sounds. The problem that deaf people have is that sounds are distorted and muffled because they are either massively amplified through hearing aids or the sound through cochlear implants is synthetic. Imagine someone stands beside you talking with their hand over the mouth, while the wind is blowing in your ears. You could hear them but you would find it hard to listen to what they are saying.

[TheDrsDocMartens]

And implants won’t work for everyone and other people won’t get on with them.

[Kitsandkids]

I thought Lewis was lovely. I'm glad he seemed happier in the end.

Listening to Andrew you wouldn't know he was deaf, but I think his mum said he was 4 when he lost his hearing so I suppose he already knew how to talk and what speech sounds like, whereas Lewis was deaf from birth I believe.

It was interesting that the school doesn't encourage sign language and that some of the kids, like Andrew, don't know sign language. I would have thought it would be taught at the school. Where do the other children learn it, if they are from families with no deaf people in so can't pick it up that way?

[TheDrsDocMartens]

Traditionally it’s learnt from each other and outside in the Deaf community.

[nomorespaghetti]

My daughter is profoundly deaf, diagnosed at age one and implanted four months ago when she was 18 months old. I loved this programme, I loved the school, made me want to send my daughter there (although i don't know if i could be without her every day!) I think the manualism/oralism debate wasn't really touched on, probably because it would have required the programme going on for several more hours. It's so controversial, we're trying to raise my daughter bilingual, and we've come up against resistance on both sides.

I wonder if Lewis had wished his parents got him the implant as an infant, when he might have been able to get on with it a bit easier, or if he appreciated that they left the choice to him. That's one of the things i struggle with as the parent of a deaf child, whether we have made the right choice and whether she will thank us for it in the future, or if she'll wish we hadn't implanted her.

[guiltynetter]

what channel was this on please? i’d like to watch it.

[guiltynetter]

ahh i just found it on channel 4.

[haveacupoftea]

@nomorespaghetti I am struggling with that decision at the moment to. It is a big thing to make such a life changing decision on someone else's behalf. Especially in this day and age when you feel like the big breakthrough to restore hearing could be just around the corner - by which time you've consented to remove any residual hearing your baby has. It's tough.

[purpleme12]

Cupoftea yes I guess it makes sense about it being muffled.

Can I ask what you mean when you say about agreeing to remove any residual hearing he has left?

[TheDrsDocMartens]

bilingual is always going to provide more options than being reliant on a CI/hearing aids etc. CIs might not be tolerated, break, not practical in sports and no one knows how long they’ll last as the first ones are only 20 (ish)years old.

[TheDrsDocMartens]

purpleme the CI is fed into the cochlear destroying any potential residual hearing

[hyperspacebug]

CI doesn't necessarily destroy residual hearing these days as surgical insertions are much softer - I still have most of my residual hearing. It definitely makes interesting to compare Hearing aids vs CI. No contest there...

To OP, how well deaf speak is correlated with the combination of the following:

1. how much residual hearing they have (kids with moderate/severe hearing loss expected to speak better than profound)
   
2. prelingual (like Lewis, born deaf) or postlingual ( like Andrew deafened at 4, after already having learnt to speak as hearing child and his brain has memory of sounds)
   
3. how balanced/distorted the residual hearing is (lots of profoundly deaf people don't have hearing of high frequency sounds at all)
   
4. access to intensive speech therapy and having your speech corrected
   
   I didn't get from the program how old the twins were when they got CI.

[TheDrsDocMartens]

hyper I didn’t realise they’d improved the insertion. That’ll make a huge difference in long term use.

[nomorespaghetti]

Yes we were told that the surgeon would try to use a soft technique to preserve my daughter's residual hearing, but due to complications during surgery they had to drill out her third bones of hearing, so she had nothing at all now. That was a sacrifice we thought was worthwhile though, as all the pre-implant tests showed that she couldn't detect even 120db at all but one of the eight frequencies that tested, and hearing aids did absolutely nothing for her.

@hyperspacebug if you don't mind me asking, I'd love to know more about hearing through the CI. How are the high frequencies compared to HA?

My daughter's been activated four months (she's 22 months old now) and it's amazing how much receptive language she's picked up already, she's very close to being age appropriate (obviously a lot further behind expressively). But we also know she can lip read. With her processors off she still points correctly to objects/people when we ask, amazing really!

In case of interest: www.theguardian.com/lifeandstyle/2017/dec/16/a-letter-to-our-child-who-is-deaf-for-whom-we-have-to-make-a-big-decision

[Mamia15]

Also, with CIs, not all work which is why preserving residual hearing is important although not always possible. I know of a couple of failures, one couldn't get to hear all of the frequencies and another could not hear anything at all :(

[Mamia15]

nomore - the sounds are very different. You usually hear these as beeps or robotic noises to begin with.

[PurpleAlerts]

I work in deaf education, but not in a school for the deaf, so I found this programme really interesting. A few of my past pupils went to Mary Hare for senior school and all did really well. However, I do know that one struggled massively when he left the school to go to college.

I thought the different difficulties faced by deaf teens was very poignant. Lewis, who wanted to be more a part of the hearing world and the frustrations that brings in learning to hear through a cochlear implant and improve his speech, and the total opposite in Andrew who, because he didn't sign felt caught between the deaf and hearing world.

New born screening has changed my job dramatically as children are aided or implanted from a much younger age. When I first started in my career, it was not unusual for little ones not to be diagnosed until 2 1/2 -3 years of age, sometimes even later, when suspicions were raised about lack of speech development. Many even profoundly deaf children passed early health visitor hearing checks due to poor screening methods where they appeared to respond to sound but might have been reacting to other sensory stimuli such as as the draft from a swishy skirt, strong perfumes, the glint from sparkly jewellery or just the fact that children with hearing losses have more developed peripheral vision.

Much of my current work is with deaf babies and pre-schoolers and if aided/ implanted early enough, with no additional needs, the hope is that they will have developed normal speech and language skills by the time they start school. In our service, we have a family signing tutor as many of our parents want to use signing too. In my experience, signing does not slow down speech and language development. Most of my older past pupils can sign and can speak as well as a child who may have been drilled in auditory verbal methods. It was lovely to see the MH pupils signing away to each other. The school must have changed dramatically in the past 15 years or so. I know a deaf adult who went there years ago and signing was positively banned, even in social situations!

On the question of cochlear implants and the destruction of residual hearing, they do try to retain this and there is a new hybrid cochlear implant system which is a cross between a CI speech processor connected to an internally implanted electrode array and a regular hearing aid facility which goes through the ear canal through an ear dome.

[TheDrsDocMartens]

I’ve worked with children who have BSL as their first language and when given it from birth ( as in BSL fluent parent/s) their language is amazing. Way above speech in most cases.
Its a shame so people believed Sign stunted speech as with more positive attitudes towards Sign many more deaf children could be bilingual without deaf parents.
There was research done at Lancaster Uni on some of the first cohort of implanted children to reach adulthood and many wanted to sign or already did.

[hyperspacebug]

nomorespaghetti - I got CI as adult - I was born with very little hearing so whatever I had amplified with hearing aids was very distorted - hearing aids never gave me a good speech discrimination but enough to alert me to presence of sounds. CI is much better in terms of sound discrimination than what I knew before (which is not much).

Congratulations on your daughter getting CI and flourishing!

Late-deafened people say it will be horribly robotic in the beginning but usually after couple of months things smooth out. The sound are probably slightly more electronic or whatever, but by the time you get CI you are too desperate to hear again. For vast majority CI is already great at picking up on most sounds and conversations. The only thing CI research could do more in is music. ex-musicians with CI do struggle with more tonedeafness. But again I have seen kids with CI picking up music instruments.

The most interesting bit about this documentary of Mary Hare is how many children with CI are there. And twins with CI joining deaf school after struggling at mainstream. It just shows that CI is not a quick easy passport into hearing world. Twins - one got CI at 2.5 (after no speech) and another twin was hearing until 5 and got CI later.

It'd be good for parents to be prepared for this possibility that may or may not happen, it's not very uncommon to see children who are deemed to have done amazingly well with CI and are on same level if not ahead of their hearing peers - then they start to struggle with increased auditory demands as they reach secondary school and uni stage. So continued monitoring and support in hand may be still needed.

Good luck.

The saddest part of the documentary is also it shows that Mary Hare is not very accessible to more deaf students. I've known adacemically very intelligent people who couldn't talk and found MH difficult. I'll be following Frank Barnes school whose lessons are in BSL with great interest.

[Lovelise]

We have a deaf 6 month old and are just at the beginning of our journey. Watching this gave me and DH food for thought. I would definitely consider CI for DS as a child if he needed it. As for sending him to board at that school, I think we would miss him too much!

The kids there were doing great although I felt sorry for the main lad they were following. When he said the first thing he wanted to hear was his name. I was in floods.

I'm slightly obsessed at the moment about hearing anything about deaf people, how they get on with hearing aids, how they've gotten on in life. So reading some of your responses on here is heartening.

With DS being so newly diagnosed, it hasn't quite sunk in.

Wow, that was long. Sorry.