Supercalifragilisticexpialidocious!

10 03 2011

I’ve been jolly frustrated for a while at having almost-normal hearing with my cochlear implant but not understanding speech. My hearing is like that of a one-year-old, I have had almost no hearing for all of my life, and suddenly sounds are there but it’s all very confusing. I need to find a way to join the dots. On my quest to jump ship from lip reading to understanding through hearing, I came across Auditory Verbal therapy (AVT). Common in the US, Canada and Australia, it is so new in the UK that the trainee speech therapists I counsel haven’t heard of it. I did some digging around and found Jacqueline Stokes, who brought AV to the UK and set up a charity, AVUK. I promptly booked a session with Jacqueline in London. I wanted to find out more about AVT and how it might help me. This lady is Just. Fabulous.! I haven’t had so much fun with speech therapy in ages ~ in fact, ever!

I learned a lot in my first session about what I was doing wrong and how I could improve my ability to listen and understand speech. I need to relax and ease into listening. It’s really okay not to get every single word. Hearing people don’t always get it and they don’t panic, it’s normal not to hear every single word … they just blag until kingdom come. I am so used to grasping for every tiny little itty bitty clue I can get when lip reading, that NOT to do this is really quite difficult. I think Jacqueline liked my lip reading skills – I was able to lip read whilst she had her back to me – I could see a corner of her mouth and that tiny bit was enough ….. *grins*. I’m switching my focus from visual input to auditory input. I’m learning to trust what my cochlear implant is telling me.

I’m learning to stop listening like a deaf person. I always ‘switch off’ when I’m not lip reading because I’m worn out from the effort and would like a break. But the sounds of life are constant and all around me. My usual mantra to my clients is ‘If you want to be a fish, you have to act like a fish’. If you want to be an accountant, you have to act like an accountant – be comfortable with numbers, like working on your own, love spreadsheets, like helping clients. If you want to be a hearing person, you have to act like a hearing person – respond to sounds, recognise sounds, change your psychological take on incoming information, be more involved in the world. Simply put, I need to pay more attention! Listening is a real effort when you’re not used to it, it’s hard at first, but will only become easier with practice. AVT can teach you how to practice and gain in confidence, which is important to make progress. When I was at AVUK, they treated me more like a hearing person, expecting me to pick up sounds around me ….. they certainly have high expectations!

And have I made progress? It’s been 2 days since my AVT session. Yesterday I had this conversation with my stenographer. I had told her about lipreading Jacqueline from behind, so this time, she sat behind me, so I couldn’t cheat. She told me about her commute home the day before, and her commute into work that morning. I repeated it all back to her so we could check I was understanding what she said. I was stunned and delighted to understand all of what she said, except for one word.

I’m still trying to pick myself up off the floor.

Today, I have had mini conversations all day with my stenographer, looking at my computer screen instead of her face. It feels really strange. At one point, she threw a question at me – Would you like a cup of coffee? – and I delightedly threw my reply right back at her.

Ping. Pong.
Ping. Pong.
Back and forth.
Ping. Pong.
It’s becoming a little more of an easy rhythm.
Ping. Pong.
Practice makes perfect!
Ping. Pong.

I am finding it tiring, and after conversing for a while, I will suddenly get gobbledigook instead. But it’s amazing to be able to understand a whole sentence, with no set context, when I have never been able to do this. It’s incredible. It’s simply supercalifragilisticexpialidocious!

* I hope Jacqueline doesn’t give me this word to listen to!

AVUK is based in Oxfordshire but they have just opened a centre in London, next to Baker Street tube. Amazingly, there are only ten AV therapists in the UK. Six are employed by pedriatic cochlear implant programmes. Unfortunately, AVT here and in the US seems to be geared towards children. I strongly feel this therapy would help some deaf adults too. If the NHS have given us this wonderful (and wonderfully complicated) technology, shouldn’t they also teach us how to use it? I’m not talking about mappings / adjustments and getting the best out of the cochlear implant. I’m talking about getting the best out of our brains, being shown how to listen.

Here’s an analogy (thanks to Howard for the brain sparks). Imagine you’ve been given a brand new top-of-the-range Ferrari. Anyone who has driven a car before can get in and basically drive it from the outset. They’ll take a while to adjust to the steering, the power, the amazing experience. This is like someone who has been hearing then given a cochlear implant. Their auditory memory can pick up where it left off, and recognise sounds, and start to use the implant fairly quickly. Now, imagine you have never even been inside a car, or that you have never seen one. BAM! A beautiful Ferrari has suddenly landed on your drive. What do you do with it? It’s scary, confusing, and an awfully big thing to deal with on some days. Basically, the hospital have given me this fabulous technology (Ferrari/CI) and said ‘Off you go’. The car has been sitting on my drive for a year and I’m struggling with it. It drives  beautifully, but I’m no expert at driving or at getting the most out of it. The audiologist is the engineer and can make sure it runs well, but I need to be able to operate it effectively – and this is where Auditory Verbal Therapy comes in.  I need driving lessons, or to learn how to listen to sounds, before I can make sense of it all.

Cochlear implant recipients are typically offered six sessions of speech therapy which is fantastic, but I felt these focused on assessing the amount of speech I was understanding rather than on basic listening skills. Is this enough for pre-lingually deafened people? I didn’t think it was for me. I don’t know how to listen, and understand sound, simply because I’ve never done it before.

UPDATE (March 13, 2011):

I have discovered LACE (Listening And Communication Enhancement) software and will be using this to improve my listening skills. LACE was conceived by audiologists in the US – however, a UK version will be produced by PC Werth and released in a few weeks, complete with British accents. This is GREAT news for British users! I have gone through the trial version and found it quite difficult. It looks like an ideal rehabilitation tool as it allows the user to practice listening to fast talkers (this was mind blowingly difficult!), speech in noise, competing voices and using your auditory memory.

LACE : UK version / US version

Auditory Verbal UK
AV therapists in the UK
AVUK videos
Donate to AVUK

Christopher Place, London (UK)
John Tracy Clinic (USA)
Auditory Verbal Center (USA) – Samantha B is an alumni and BEA mentor

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16 responses

10 03 2011
BionicNellyWiz

Hi there,

It’s interesting reading how you’re learning to hear speech properly. I’ve not researched with speech therapy, especially with my implant that all I got at the beginning was dud dud dud….it’s a lot better now than it was before but I doubt it can ever be better and will always remain as the “child”. I think for some of us it can take weeks/months and even years.

10 03 2011
Dianrez

It’s good to hear from someone who is experiencing AVT as an adult. Would you mind telling us how much hearing experience you had before…do you remember having normal hearing early in life, or did you have partial hearing for years? Every little bit helps with success of adult CI implantation. Wishing you all the best!

10 03 2011
Funnyoldlife

I was born deaf and wore hearing aids from 3 years of age. The hearing aids gave me a little sound, I had enough hearing in one ear to pick up the vowels in speech. The other ear gave me a hint of environmental sounds but no speech (this is the ear I’ve had implanted).

10 03 2011
BionicNellyWiz

I was born deaf with my left ear having devices since I was a toddler but my right ear never had a hearing device as there was no sound at all for the hearing device to work with. My better ear was the first ear implanted and when the CI failed and it was a horrible time – depression, stressful and isolation with no sound and two kids to support at the time was hard work as had to teach my 9 year old boy and a baby to learn to communicate with me – hard work as had to teach them to sign. I was brought up to speak orally in mainstream schools throughout my life and this is due to speech therapy when I was a young child. However the dud dud sound from the right ear has progressed wonderfully due to through self-training because I wanted it to work. So do keep us posted with AVT as it is really good insight as to how it helps you as I’ve never heard of AVT.

10 03 2011
Funnyoldlife

You’ve done really well – good on you! Progress always takes a lot of hard work. Another post on AVT will be coming up shortly. I am finding this therapy fascinating – wish I had heard of it years ago!

12 03 2011
Nanna

Don’t get on top of yourself about not having heard of or known about AVT years ago, for with HA’s you would not have had a chance, whereas with the CI you are no longer standing out in left field.

With the HA, I had to lip read if I wanted to understand. My ability to differentiate between this sound or that sound was almost zero and had you spoken to me behind my back, I might not even have heard it. Certainly, even if I had heard the sounds of speech I would not have understood it.

Yesterday, coming out of a store, I heard something about a toy that is scientifically designed to give your dog a lot of play and pleasure… I am amazed! I was just passing by. So, I stop to listen but without looking at the TV screen and sure enough, I understand almost all of it. There’s no on-screen speaking person, just a dog playing with the aforementioned toy, which set me back at least £5.00, but what the heck – I was so pleased to have casually overheard something as useless as a TV advert.

12 03 2011
Funnyoldlife

Lol, what a lovely pleasure Nanna! I don’t blame you for getting the toy 🙂 I think you’re absolutely right about the HAs – like you, AVT would have been wasted on me. That was wishful thinking on my part!

13 03 2011
Howard Samuels

I’m blown away by how clearly the two girls speak! They do use odd words like fortnight, but that isn’t their fault.

Tina, having been hearing, then deaf, then CI-hearing, I can certainly attest to doing better with implants by relaxing and not concentrating too hard. And people with normal hearing most certainly paper over bits that they miss. It’s pretty much an unconscious effort.

Congratulations on making another giant step!

13 03 2011
deaflinguist

Thank you for truffling out those resources Tina! I also had a go at the trial version – whoah, I found it hard too. I think as much because of the unfamiliarity of the accents as anything, so a UK version will be great. Familiar voices are easiest, so it’s logical familiar accents will be easier for comprehension. After all, hearing people find unfamiliar accents less easy to understand too.

Howard – not quite sure what you mean about fortnight being an odd word, or is that an example of the difference between US and UK English?

16 03 2011
Howard Samuels

Sorry, that was a little jab at the UK/US differences. There are probably a lot of people here in the US who don’t know that a fortnight is 2 weeks. We certainly don’t measure speed in furlongs per fortnight!

I’ve had a lot of fun since meeting Tina learning bits of UK slang (or proper English, if you prefer). I’m chuffed!

13 03 2011
Funnyoldlife

I have just found this which is good practice for audio memory. Game 2 is excruciating! http://www.manythings.org/ac/

20 03 2011
Howard Samuels

I’m getting all the words, but my memory isn’t worth, um, what was I talking about again?

14 03 2011
Nanna

I had a wee listen to game two and just sat here with my mouth hanging open. I can hear that the words are different but what they are is up for grabs.

Shesellseashellsattheseashore.

23 03 2011
.

So Glad you have met Jacqueline – we too go to AV with our daughter and have been doing our best to document her journey through our own blog.

Great blog by the way!

Chris
http://www.alicesears.com

24 03 2011
Funnyoldlife

Hi Chris, I like your blog! Alice is so lucky to receive a CI and AVT so young, she’ll do fabulously! Wishing you the best of luck.

8 12 2011
CJ

Hi Tina

My battle seems never-ending, Consultant once again said, “People would just find it unbelievable” Well as you know I had skin graft in both ear canals, as there isnt anything at all to see anymore, and if any trouble Scan would be needed.

Latest: I wont go on and on I will make this brief As possible, I think people after all these years as I’ve said since Birth, Just wouldnt Believe me.

I have swelling behind both ears that I never noticed, but Dr did and Now have earache, oh Nooooo not 1 ear BOTH, me isnt it. Ok this is it as it stands

I had eye stitched up now as damaged nerves,muscle spams in face because of ears, are causing infections in eye.

When Dr typed on monitor at start “Hello what can i do for you” I said i dont really know, with tears trickling, I wiped them away quickly.

Swelling behind both ears, 1 eye open, broken sleep, face becomes parralised, Tinnitus STILL HASNT STOPPED and still LOUD, it never eases.

I was on 5 pills a day now up to 7, with 45mg Mitazapine, and tiazepam(sleeper added)

Depression, Dementia=forgetting grandkids by name bad enough not hearing them, The rest I think most people know about, I started a Blog but you know what Tina Ive given up, Ive had enough.

I will never be repaired as regards ears Consultant has said.

The only good thing is I saw on SEE HEAR ABOUT DEPRESSION, and Councelling but I think its in London, Maybe thats my next route I really dont know, Im having problems getting out of house now. Oh its so rediculous.

But among all this since Birth, I still wish everyone the best, you as well and Hope all goes well, I wish i could write or type a book of my history, but my memory wouldnt allow me to remember and finish it.

This isnt a moan just an update on the history of ME….sci-fi stuff.

All the Best Tina and everyone.

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