Wednesday, August 01, 2007

A response to Fintan's comment

Hi Fintan,

Here are my answers to the questions you posed in the comment on the post ‘Radio Shows that should know better’. I hope it goes some way to demonstrate that we did not pursue cochlear implantation lightly but that it wasn’t a difficult decision for us, or many other parents, to take.

Fintan's comment is in block quotes - my reply is in italics.


Lets hear 2 sides to every story... ah well I cant join the debate.. no transcript.

You nearly lost your child through meningitis and your doing what you think is best for Tom after all you are a parent.

I would tend to wait till technology improve before implanting people .. but happily they do have guinea pigs.

The technology is progressing at an enormous rate - with his processors Tom is able to interpret the full range of speech sounds and is completely ‘peer appropriate’ in terms of his language skills. He sings, he shouts, he mimics. He has an array of 'silly voices' that he uses to make us laugh and get his own way. His voice is an incredible tool that he makes use of every minute of the waking day.

Considering the impact that meningitis can have on the cochlea in a very short time span (the fluid channels often turn to bone making implantation difficult or impossible) and the key language development phase that Tom is in, waiting was just not an option. Happily, Tom got to join the thousands of guinea pigs around the world and got to speak.

I have a few questions to ask is..

1) did you meet any implantee before Tom was fitted?

Yes, we met a number. None wanted to remove their implants.

2) were you aware risk of meningitis after having a implant?

We are only too aware of the risks of meningitis both with and without implants. We watched our son lie in a coma for four days and were told that he may not progress much further. The grand irony is that, in the UK, the vaccine that would have prevented Tom contracting the illness (and, of course, being left profoundly deaf) became part of the national vaccination program in September 2006; five months too late.

What you seem to be unaware of is that all children who are about to be implanted are given the meningitis vaccine too so any risks are vastly reduced.

3) Do you actually think that Tom will never get a job ,have family because of his Deafness?
What exactly is he missing out apart from not hearing music.

I think Tom’s deafness will have an impact on his career choices regardless of whether he had implants or not. I think having his implants and developing spoken language will greatly increase the number of choices open to him. Whether that is a comment on how prejudiced society is, I don’t know. Clearly there are injustices done but it is not my place to campaign for rights for the deaf on the back of son’s disability. I want him to have choices.

4) are you aware that you are saving tax payers money by implanting Tom and sending him to a Hearing School than having to send him or set up a Deaf school?

I am only too aware of that fact. Do I think that is the reason why children are implanted? I suspect it is one of a number of factors that contribute to the calculation of the Quality Adjusted Life Year (QALY) but is that a reason not to implant?

5) Have you asked that when going for a brain scan (for example a motorbike accident)that a implantee will give false readings...

I know that Tom can’t have an MRI without having his implants removed but I suspect that, if circumstances were so serious that such a procedure was necessary, I think we’d be worrying about far more than his implants.

Can you see why some people are against it for example... why bother getting the whole family to adjust when adjusting a implantee is the easier option.

I do understand people’s concerns and, without wishing to appear trite, I hold with the phrase ‘I disapprove of what you say, but I will defend to the death your right to say it.’.

I do, however, take issue with regard to ‘bothering getting the whole family to adjust…’. In the twelve weeks that Tom was without sound we, his parents, started learning BSL as did his grandparents who were around a great deal of the time. They were all committed to lessons and learning but the harsh reality is , for the extended family, when you are not exposed to it every day it would be very difficult to progress. This would put communication barriers up between Tom and his extended family, isolating him from them. That can’t be good.

You do your best to make it sound the poor choice but when ‘the easier option’ brings this much joy to our family I’ll opt for that every time.

Loads of research being made to *cure* Deaf people and as you can now see the research into downs syndrome where you can abort them in womb.
Can you imagine (for argument sake) that you can detect Deafness in a womb and you have the option to abort it.. As you know that any child with a disability is too much work for parents and the cost of help is prohibitive.

Sweeping statements like that don’t help any debate. Children with disabilities cannot be described as ‘too much work for parents’ and hinting at eugenics doesn’t help either. Cochlear implants are about giving people access to sound and, as a natural consequence, spoken language. They are not forced on anyone and they are not about taking something away.

So there is always a debate on who CI benefit? the implantee or the parent?

It is clearly a benefit to society as a whole – I don’t think there is really a debate there. What’s good for the parent is going to be good for the child and vice versa.

I wish Tom good luck in the future and hopefully by the time he is 16 and leave to get a job all discrimination will have ended..

I thank you for your good wishes and hope he isn’t the victim of any discrimination too.


Fintan said...

Hi Jason,

Thanks for your reply to my comments.
Its late and I will make this one short,should be getting some sleep ready for the holidays with my children tomorrow.

I will reply to what you wrote when I feel fresh from my holidays.
I just want people to be aware that without hearing it does not mean that our mental ability are low or stupid.
Just want parent to know that...because that's how we feel what the doctors or general public thinks.

I know 2 CI people and we get on great never treat them any different to me but however like tom will find that other people treat us different!

anyway I am rambling on and I hope we can talk more when I get back :-)

Orfhlaith said...

I just want to say that, as a parent of a bilingual deaf 13 yr old boy, where was the deaf community when I needed support and I needed to learn sign language to communicate with my son. I had great help in NY, but when I moved to CO I hardly met anyone. As a hearing person, I was "tolerated" but hardly welcomed with open arms. My son communicates both in sign and in spoken language and he is far from stupid, but, as an adult, sign was difficult for me to learn and the best way is continued exposure to people who use the language on a daily basis. This just wasn't possible and my son was losing out because of it. My daughter also signs fluently, she started learning when she was eight. So, not all families ignore the sign language route, it is just double hard when you are trying to be a family too.

Fintan said...

"What you seem to be unaware of is that all children who are about to be implanted are given the meningitis vaccine too so any risks are vastly reduced."

Like all so called experts on Deafness this what I always come across.
I am aware of meningitis vaccine, it only reduces the risk.
Just don't assume!!

Although I only know one such case a child died through CI , and yes its a small risk.
I wouldn't take this risk let alone have my children go through this risk.

But every parents are different, and 9 out of 10 children are born to hearing parents, and they are horrified the children born with a disability.

Although your son wasn’t born deaf, just don’t assume that we can’t be educated without hearing.
Ask a deaf person,life isn’t bad without hearing.
Do you ask a wheel chair pusher how he/she copes rather than asking the person themselves?

Children now adays are screened for hearing and mine was screened a day after he was born, I am not against this but its nice to know if he is deaf or not so we can put him on the right path.

I am not against CI at all, but what I am against is lack of information from these company’s that supply CI they are not really telling the whole truth!

Also Tom wears glasses are you going to suggest that he takes laser surgery to fix the problem?

It is very misleading that deaf people cant cope/get on with life without hearing

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