This Life.

Nothing ever prepares you for the shock of finding out your child has a disability, but that is what we face and deal with it we will.

Similarly, I don’t think anything really prepares you for what the aftermath of cochlear implantation entails. We have, along the way, sought out and been offered advice from a range of sources so diverse it makes my head spin just to think about it. We have spoken to countless people – clinicians, therapists, teachers, friends, parents and have read more papers and books than most people will read in a lifetime. Every single one has their own interpretation of what is needed to make your child ‘succeed’ with a CI.

I knew there would be therapy. I knew that it was up to us and of course Alice, to make this work, but I don’t think anything really prepared me for how all-encompassing it would become.

Make no mistake if this is a journey you are embarking on yourself (and I know various of our followers are). This is a full time job. There can be no half measures, no hoping it will be alright by itself, no taking your eye off the ball else Alice suffers as a result.

Cochlear implantation is about windows. Firstly you have a window of opportunity in which to implant your child to give them any chance at all of developing normal or near-normal speech and language. The ideal seems to be before 2 years old, but 2-4 is deemed OK. Once you have been through the surgery itself, you then have a second window in which to instill an appreciation of sound into your child. Miss either of these windows…….we can only guess at the outcome.

So here we are in this second window. Alice is implanted and her progress has been nothing short of stunning so far. That said, if we have a finite period to get this right, then every waking hour becomes dedicated to making sure Alice gets the best possible chance and we never have to look back with regret.

Let me give you an idea.

Monday 11th May – Afternoon nursery at Christopher Place including 40 minute one-on-one SLT session. This is a five hour round trip.

Tuesday 12th May – Off to AV Oxford for our first session with Jacqueline Stokes. This is a four hour round trip. 4pm, Home SLT with Mila.

Wednesday 13th May – Home visit from sensory support worker Jackie.

Thursday 14th May – Home SLT with Mila

Friday 15th May – Home visits from TOD from St. George’s, Gill and our own TOD, Anne.

Sunday 17th May – Afternoon at CICS get together at the Bank of England sports club.

Monday 18th May – Morning at St. George’s for new mapping. Home for a quick lunch before heading off to Christopher Place again.

Tuesday 19th May – Morning at St. George’s for SLT session with Antonia from Christopher Place.

and so on so forth. Come September we will be at Christopher Place twice a week as well as AV Oxford.

These are just the formal sessions. Every waking hour with Alice has become an SLT session. Everything we do is described, discussed, repeated and then repeated again. People have taken to stopping  and staring at me when we walk the dog in the morning as I probably appear insane making funny noises to Alice in the middle of the woods.

And then there is poor Joseph, our beautiful son. Fortunately he is at school most of the time now else I have no idea how I would share my time with him. Anyway, he’s a great help and loves being noisy with Alice.

Like I said, nobody said this was going to be easy, but I never knew it would take over our lives quite as it has.

Dear Alice, we do love you so.

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Progress

I’m not really sure any of us knew what to expect after Alice was switched on. You can read every blog, paper, book and website you like to get a feel for the progress your child might make when they are activated, but in reality, it is a classic case of idiosyncrasy. Add to that the natural anxiety of being a parent and the minute-by-minute examination of the minutiae of Alice’s behaviour – is she hearing me or is she just lip reading? –  and the whole process becomes very confusing.

All this said, I cannot believe the progress Alice has made in the 1 month she has been switched on. She is already consistently responding to sounds and is showing first signs of being able to differentiate between different noises. I have been absolutely blown away. Equally, the ease with which she wears her ‘new ear, and the rapidity with which she has moved up through her maps – she is now basically up at ‘full volume’ (a dynamic range of 44) after 4 weeks – is more than we could ever have hoped for. 

I have no doubt that this whole process will be a case of two steps forward and one back, but that still means we are moving in the right direction.

Alice has had some remarkable and staggering assessments from her various SLTs so far, one even saying that she had ‘never seen a child implanted at Alice’s age who had progressed so rapidly’ – this from one of the SLTs at Christopher Place who, you would imagine, has seen quite a few CI users!

Best of all, Alice has developed the ability to say Ma-Ma. Something we both dreamed of, but had not expected for anything up to 12 months from now, if she ever said it all. When she first said it clearly in the car on the way back from Devon last weekend, I have to say there was not a dry eye.

I think we are winning…..

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