Yes, it is time..

Hearing evaluations are recommended every 6 months for a hard of hearing child and Adith’s next one is due in July. But since I felt he was asking for more repetitions at home, I scheduled one in May. As suspected, his hearing had dropped further, especially in the right ear. This had happened a few times before and the audiologist usually reprograms the hearing aid to accommodate the additional loss. I thought the same would happen this time too but was in for a little surprise.

Shelley, our audiologist was concerned that with his right ear offering little support, it was too much work for his left ear. His left ear itself had a high degree of hearing loss and moreover, his speech was still developing. She said that although he may survive at his current school which had trained teachers of the deaf and had small group settings, it would be hard for him once he moved to a public school. In a regular class of 20 to 25 students with teachers not specifically trained, he was bound to struggle and might possibly fall back.

We had begun to see early signs of this already – engaging in larger groups of children was becoming more difficult. When we go to birthday parties and potlucks, Adith prefers to play alone (at times). This might be something to do with his personality and not his hearing but it is a matter of concern for us. Being able to hear is essential for anyone to engage in a group. And of course, success in school largely depends on the ability to hear teachers and follow directions. Shelley went on to say that at this point, he may benefit more from a cochlear implant and as per her evaluations, he was a possible candidate. If we wanted to proceed, the scheduling team would call up for further appointments – one with a cochlear implant audiologist and another with a Speech Language Pathologist. These were further evaluations in the standard procedure to confirm the candidacy.

Now, this was huge. With his progressive loss, we did anticipate a recommendation for implants in near future but this took us by surprise. We expressed our consent and ended the visit. That was the last time we would meet Shelley. From now on, it would be another audiologist. We thanked her for all her help, she had been really amazing!

We spent the next few days reading about implants and their working, stories shared by CI (cochlear implant) recipients etc. Loveson showed me a video of a CI simulation and to be honest, I was shocked and disappointed. It was nothing like what I expected. The sounds were there, but embedded in a stream of electronic white noise. Whaaat! Was this what the best technology offered? I could barely believe what I heard. The music part especially made be sad. I was devastated that our son could never experience music the way we did. It was nowhere close to the original.

Oh well, what was I thinking! The incredibly complex task of sound processing done by 30,000 hair cells was taken up by programmed electrodes. How close to actual can it possibly be? As I read further, I understood that though it sounds artificial and robotic at first, the human brain would adapt to this new way of hearing and it would become the new normal. It is not that once the implants are there, the child begins to hear everything the very next day. It would take weeks or even months for the brain to train itself how to process these new signals. It is indeed a time consuming and effortful process to learn to listen all over again with the implants, but would be well worth it. I have seen videos of people with cochlear implants talking in fluent English, with excellent articulation. In fact, one could never even guess that it was a deaf person talking, such was the clarity of speech! However, it must be noted that not every one who is implanted has this level of clarity. There are several determining factors like how early it was done, the amount and quality of speech therapy, other oral motor deficits etc. Here is a video from Adith’s school. I like to see this video at times to remind myself where Adith could be if provided with the right training. They are siblings and both are bilateral CI users. So inspiring to hear them talk!

Video Courtesy: YouTube Channel of DePaul School for Hearing and Speech

The guest article section in MED-EL Blog has posts from CI recipients belonging to various age groups. Though there are some instances where the implants cannot help, for the most part they assist an individual to lead a life remarkably close to that of a hearing person in spite of their severe/profound hearing loss. Isn’t that really amazing? Thanks to the World Wide Web, we could read all these stories and take an informed decision for Adith!

And now for the physical aspect of having implants. Here is a picture of a boy with cochlear implants.

Cochlear-Implant-on-boy
Image courtesy : New Zealand federation for deaf children

The device behind the ear is bigger than a typical hearing aid and additionally there is a thin coil and a circular magnet that stays on the skull. I once told Loveson “I am not sure if I like implants. It would make him look so different and people might stare”. Loveson calmly asked “Do you want him to look like other kids or do you want him to hear?”. I felt so lame being concerned about his appearance, when his hearing was in question. Of course I want him to hear, just that I wished the device was a bit more discreet. How would Adith feel about this when he grows older? We are talking about a device not for a few months or years but an entire life time! My only solace is having read “I am glad that my parents chose to implant me. It is indeed the best decision that they made!”, ” I don’t think my deafness is holding me back in anything”, “I enjoy music and talking with family and friends”, “I play piano” etc. in blogs written by cochlear implant users. Everyone seemed to love their implants and highly recommended it for others too.

In one case however, a girl noted that she did not really benefit from implants a whole lot. She was profoundly deaf since birth, heard no sounds or voices and was implanted at age 15 or so. When people talked, she could hear some sounds as per the lip movements but still found it difficult to decipher it as speech. It was good to read a different perspective about implants too. The bottomline is that cochlear implants is not for everyone. It should either be done at a very young age or done for a person who has had some level of hearing. Otherwise, the brain cannot get accustomed to it.

Coming back to our story, Adith had evaluations done by a cochlear audiologist and a speech pathologist and they have found him to be eligible for an implant. We then met his ENT doctor and scheduled the surgery. Yes, it is time..on June 29th, he will receive an implant for his right ear.

PS: I was watching the cochlear implant simulation video again and noticed that there were several comments by CI users themselves. They report that it is a poor simulation and is far from how they hear! What a relief! I would never know how it actually sounds but I guess the video I shared above is testimony that implants can do wonders :). We are hoping for the best!

5 Comments

  1. Neetha said:

    Diyappa I don’t know what to say but I am deeply moved every time read your blogs. You write in such a matter of fact way inspite of the heartache you have. Your blog keeps things in perspective for me and reminds me how easily we take things for granted. Thanks for sharing and keep writing. Prayers and wishes for the implant to work wonders for adith.

    June 20, 2016
    Reply
  2. Remya said:

    Diya…I’m sure he will benefit a lot from the implants…my prayers are with you :)

    June 20, 2016
    Reply
  3. Reni said:

    Diyappen , I am really happy to see the positive energy with which you are taking things….. Praying that everything works out well for Adith…. God is in charge…Nothing happens without Him knowing….So trust in Him and march ahead with confidence…

    June 21, 2016
    Reply
  4. Diya Loveson said:

    Your words of support mean a lot to us..Thanks!

    June 21, 2016
    Reply
  5. reena thomas said:

    mole enthezhuthanam, evide thudanganam ennu ariyilla.enkilum ezhuthunnu blogile oro sentence vaaikkumpozhum ninne muzhuvanaayum njan kaanunnu. ente mole through prayers & holymass & adoration we can be as close to god as possible so thatwe will get the stength to face the situationsWe shall pray strongly surrendering allofus ,Adith , his doctors & therapist to Him-god will surely help & bless us I am sure.hope & pray for the best mole, umma

    June 21, 2016
    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *