The long road ahead

Anyone entering on this journey should be under no illusion, its very very tough.  Alice needs to be taught speech and language one step at a time.  Being determind and logical people we have chosen to follow an AV approach. 

For the uninitiated, AV is Auditory Verbal therapy.  In essence, AV believes that parents (or carers) of the hearing impaired child are the primary therapist.  The AV therapist merely directs and shows the family the techniques for achievment.  think of it like a rugby team with coaches and players.  the rugby analogy seems to work better given the amount of time you’ll spend grinding out a result.  every metre is hard fought. 

Anyway, AV’s other main ideology is that Alice needs to learn to listen, (of course you all say) but here’s the rub.  Given she has spent 2 years not listening, we have to draw her attention to sounds and then stop giving her the other clues we all take for granted in speech.  That means no signing, no gestures and no lip reading. If she is to gain the most from her CI, she needs to develop an “auditory feedback loop”.  In plain English, this means I hear it, I say it, I think about what I can hear myself saying and then I improve it.  Alice should start to regulate her own speech and improve on what she hears.  This is a skill that hearing children do naturally, Alice needs to switch on her concentration to her ears alone. 

This is tough, Alice is an excellent lip reader, she mouths so many words, but take away our lip patterns to copy and she’s not as good.  She doesn’t like that (Daddy on the video below is distracting her by pointing at the jigsaw, to stop her lip reading), but every day we practice.  Alice is becoming good at connect 4 as every time she gets a sound right she can put another piece on the board, have a grape, get a sticker or whatever the latest game is. 

AV is all about lifestyle.  You shouldn’t leave a room without telling Alice where you are going, Alice has everything around her explained constantly and she is surrounded by the most annoying parents in the world.  We forget sometimes and talk to the rest of the world in the same way (and thereby look slightly mad). 

Aside from all the  therapy, she is growing up.  She’s down to start nursery in September, a huge leap of faith for both us and her new teachers.  Her teachers have no specific expereience of deaf children and certainly not of CI’s, so its a huge learning curve.  However, this is where her TOD comes into her own, with training days and specific Q&A sessions for the staff and the special needs team.  We have been overwhelmed by the positive response so far and pray that she will cope.  Alice can stay at the same school until she is 18, so we hope that she likes it.

The hard work continues and if you see a mad man in the supermarket, showing his beautiful daughter the milk and repeating himself a hundred times, stop and wonder why, chances are he’s doing his best to give her a most wonderful gift.

2 responses

  1. Hi Claire,

    I have just met your Mum (I think) in Waitrose in Cobham. She approached me as my son William (2 and 8 months)has a cochlear implant too. Infact he had his surgery for his second last friday. She told me all about Alice and your website and whilst William doesn’t have ANSD our journeys have been very similar. William was implanted in February and switched on in March. He was also diagnosed very late at 14 months.
    I am absolutely amazed at your blog and all the details you have given. Having a deaf child completely takes over your life and it so hard to explain to people how stressful it is.
    William and I go to the Elizabeth Foundation every week and he is well supported in Surrey too. His progress is slow but we know he can hear. We are kind of waiting for it to explode out of him. We unfortunately have no words yet, not even ling sounds. It would be great to swap stories. I am really interested in the Auditory Verbal approach. I don’t know if you can see my email address above but I would love to hear from you. I live in Cobham and most of the other people I know are based in Hampshire as he had his implant in Southampton and the EF is in Portsmouth.
    Look forward to hearing from you,

    Carmel Fenton

    • Hi Carmel – I’ll email you as well. Would be great to meet up especially as you’re just down the road and the bionic ones are so close in age.

      By the way it was my mum, she’s very good at that sort of thing !

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