Saturday, 15 September 2012

A Brush with the Deaf Culture....

This is my personal opinion and in no way do I wish to belittle the decisions of others to hang on to HAs only nor do I wish to promote CIs to anyone.
I write this blog as our decision to go for a CI was challenged by one from the Deaf culture, especially for the wrong reasons.
And these are my answers to the questions we were asked.

CI = Cochlear Implant
HA = Hearing Aids

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A few weeks back, on the insistence of a few close important people, we went to meet with this Teacher of the Deaf.
She has been working in this area of speech therapy for 40 years and if you check on YouTube for "Speech therapy in Pune" you will find an old lady (60-70 years of age) by the name AU.

First, when we called for an appointment, She flatly refused to entertain us, as Aarav had a CI.

Yes. That was the reason.
Then she said, please go and study from one of my student - Abc's mom. She will teach you. (umm??? what??)
Then when we still persisted, she let us come and attend 'sit by the doorstep and watch' one of her therapy session.

First thing we saw and were happy to see??
The kids were speaking all right!! They were speaking full sentences.

What we also saw??
1 - That she made the kids LEARN the sentences and repeat word by word.

2 - She sat facing the child and the child could see her expressions. So most of the repetition the child did, would be on facial visual clues, right?..

3 - The child - this normal child with nonsyndromic hearing loss- who was speaking ---- was. missing. out. syllables. when speaking.
Ff , sh , ss , whispered sounds were missing. or very low and rare.
Umm.. after a year or more of therapy if the child is still not identifying or repeating these syllables, is the HA really enough for him??
I think not.
But the Therapist has drilled into the heads of these trusting gullible unsuspecting parents convinced the parents that CI is not an option.


Is it not the job of the therapist to inform the parents that progress is not being made as expected with the HA and that something more might just work??
I can understand that one may strongly believe against CIs, for whatever reasons, but the decision should lie with the parents right??
One should not spread ignorance.


This lady SCOLDED us for option to go for a CI.
Reasons for the CI refusal??


1 - That the child with a Cochlear Implant cannot have a normal life.
What a big fat lie to be told!!
Says who?? In my list of blogs, please see the blog by the name "Triplet Princes and a Princess". I see a normal life here!!
I am so proud of this mom for all her efforts and little Cormac for being the little genius that he is!! He plays ball. Reads. Speaks. And does so much more. Just as any other kid his age..
Read about him here..
http://www.thelawrencetriplets.blogspot.hk/
Who said a normal life is not possible?

2 - That the child with a Cochlear Implant, cannot go near water!!
Again, says who??
Aarav bathes with his CI processor on him. He has to remove his HA but the CI stays on.
She said that with Hearing Aids, the recipient can go swimming and in the rains --- Ummm swimming?? Super big Myth.
The Hearing Aids are water resistant NOT WATER PROOF. They have to be removed before entering water.
With CI ??
AB Neptune
is WATERPROOF and one can swim as well with the CI on.

Aarav is too young to be accepted in any swimming pools here in my locality as of now.. but BELIEVE me, the moment he turns the right age mentioned by these pools, I will personally throw him in the water WITH HIS CI on him and sent this lady a billboard size picture.


3 - It is not possible to do a Magnetic Resonance Imaging (MRI) scan with a Cochlear Implant. Ever.
AGAIN Says who?? FALSE again!!
Of course its possible. Not easy and not the same as for a normal patient. But possible nonetheless.
The surgeon who did your CI plays an important part here.
But the CI recipient has to be handled differently for a MRI scan. Few important prerequisite procedures need to be done for the implant.
Extra precautions need to be taken during scanning.
The MRI team should be informed that the candidate is CI patient, and involvement your ENT surgeon is a must, so that the correct MRI procedures can be done.
And always have your CI identification on you.

All the above precautions are not impossible.
Besides, no one gets a MRI just on whim, it is a planned medical procedure.
So why not take the needed precautions and then do it?


4 - Any magnetic interference affects the Cochlear Implant...

Yes, that is true, but its not like the implant will be damaged!!
A magnetic interference such as the magnetic walk-through metal detector gates at airports need to be avoided. These may erase or corrupt the program that has been set on the processor. The internal implant is NOT affected at all.
So, this may be a demerit of a CI with respect to HAs. But all you need to do is to NOT walk through the magnetic metal detectors!!
(every CI patient is given a CI identification for such situations.. Make sure you have yours ID ready when you expect metal detectors.)
In case you do manage to get your program erased, please just go to your audiologist and reprogram the device again and your hearing is back to normal.

5 - You fall on the site of implant, it damages the Cochlear Implant and you need to replace it.
True. Very true.
So wear a helmet or the required appropriate protection when you are doing any activities that may increase the risk of hurting your head.


6 - Every few years the HA can be upgraded while the Cochlear Implant cannot...
False.
The CI upgrade can be done by upgrading the Processor only as well. No surgery needed here.
The new enhancements come in the form of a external processor upgrade. The enhancements that come as the internal implant are not as frequent and not mandatory at all.
The internal implant is compatible with a range of external processors and the cross compatibility is amazing.
All four AB processors work with HiRes 90KTM Implant.

Just so you know. Aarav upgraded from the PSP to the Neptune. And there have been no problems. In fact, the upgrade has been of a lot of benefit for him.


7 - If you get a Cochlear Implant then you are not eligible to get Stem cell therapy to cure hearing loss.
Ohhhhh okaaay..
So what do you want me to do?
Do I wait for the next 15-20 years for them to do trials on rats and gerbils and then say that Stem cell therapy is now ready and can be used for curing hearing loss in humans??

Just to clarify again, we too banked Aarav's stem cells when he was born as an insurance for the future. Stem cell therapy is surely a promising science of the future.
But we are not going to have Aarav wait for that long in the future. Aarav needs to hear now. And he needs to hear all his syllables well.
8 - With a Cochlear Implant the parents have to take too much care as the child cannot.
Aarav started putting his magnet back on his head one month post the switch on. And he was 20 months old then.
Being a kid that small, Aarav takes care of his processor really well.
He even says good-bye to the processor at night and puts it in its dry kit on his own and pats the dry kit to sleep.....
(he just stuffs the entire Neptune in and I have to dismantle and keep it properly,, but then, what more do you want a 23 mnth old to do?? )

He leads a normal mischievous life full of naughtiness just as he would have lived without hearing loss.
We see no difference.
9 - With a Cochlear Implant, Life is hectic.
Yes it is. So?
If Aarav hears well and responds well, is it not worth it?

.

.

.


And when none of her above reasons were good enough to make judge our CI decisions...

10 - The Cochlear Implant, ENT surgeons don't inform the patients about the Cochlear Implant, they just push and get it done.
NOT TRUE, complete BS.
The staff at Big ears KEM, told us everything that we should know before deciding on a CI.
Our Surgeon answered all our questions with truth. Blunt. Crystal clear truth.
No questions were dodged, or falsified or not taken. Nothing was hidden. No one forced us to take the CI decision.
We were the ones who took the decision.

Our Surgeon, our Audiologist, our Speech therapist have been the BEST people we could ever have met.
I could go on and on and on about how much the KEM team have supported us and helped us and this page would not suffice.
More on that later...


Later, I even read a blog written by one of AU's patient's mom.
 
(Google on 'im paired but em powered' - Check label Cochlear Implants).
Her lines as is :
"The mothers trained under her are all very good speech therapists and counselor. As we don't have certificates we are not recognized by anybody.I wish some good soul could see this and bring change in India."




Oh sure why not?? So next time I need to get some surgery done on me, I'll go to the doctor's doorman who has been 'trained' by him to cut me up.

As if a biased therapist is not enough .. who needs more fake-therapist-trained-mothers-who-think-they-are-therapists too.
Outrageous. I could comment and negate with proof her every written word.



So.


We walked out this lady's place without saying a single word to her. Only out of respect for her age.

Meeting with her, we felt even more blessed to have met our Big Ears KEM team. They really are the best.
And more importantly, that our CI decision has been correct all along.


All that we got from this AU lady, was that her information was - Outdated. Biased. Narrow viewpoint and incorrect half-baked opinions.
And after read her views put down in the words by her own student in her blog, I now find her to be a megalomaniac.
But then, that's my view.

These thoughts were eating at me from inside and hence this post.
Good to have this out in the open and out of my head... My blog is becoming my Pensieve!


I do not wish to comment on her any more.
Aarav's blog deserves better.

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