Category Archives: Auditory Neuropathy

One year on….

May 14, 2014 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, deafness, hearing loss Tags: , , Leave a comment

We have just passed the first anniversary of Ollie receiving his bilateral CIs…

We are, therefore, now at the stage where we can start to make comparisons between Alice and Ollie. Some things are clear, she is calmer and more settled, Ollie is certainly more headstrong (he must get that from his dad) and needs running time as part of his day. Ollie likes nothing more than being chased round the sitting room, the challenge is turning that into a listening opportunity.

Having a toddler with bilateral CIs has presented some interesting challenges. Ollie still sleeps a lot so our windows are small, he also spends quite a long time in the car doing the school run every day. It’s no surprise that some of his first words are car park and school. He also spends the car journey pointing out the buses and lorries at every opportunity – bless him.

But, he’s also discovered the terrible twos. I cannot explain the frustration of dealing with a toddler, who has thrown £12,000 worth of processors across the pavement in different directions, whilst having a shout and won’t even put them back on so you can tell him off. The defiance is huge. He also dead weights himself whilst somehow managing to ensure that at least one processor is not where you thought it was. My fear of traveling anywhere increases tenfold when Ollie is involved. The car has also provided significant opportunities for tucking a processor into a little hole, causing another grey hair before 9am.

But most of the time Ollie is too cute for words, his new favourite words are cuddle and story. Dear Ollie, don’t listen to AV UK when they teach you naughty words like “no”, you don’t need to know that and I’m waiting for “I don’t like that” which is imminent. Language development is all about what’s useful and giving him the words for what he’s thinking, so clearly we need “I love you mummy” and no more of this naughtiness.

It’s Funny What It Takes…

March 28, 2014 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant 2 Comments

…to make people learn about hearing disability and Cochlear Implants.

In some ways, it still amazes me the number of times folk ‘share’ the latest viral video of an emotional CI switch on with me through social media. I don’t say this because they shouldn’t; I don’t say this because every one of these very personal videos is not a small miracle; I say it because 31 years after the first ‘official’ CI switch on, people are still only just recognising that CIs are here to stay; that they change lives every day and that they are part of everyday life; much like glasses to those of us with failing eyesight….

I have no interest in entering into a debate about the cultural issues surrounding hearing disability. Parents make decisions for their children every day; some big, some small. For my babies they have been life changing decisions and ones I will never regret. Nobody could ever tell me they were the wrong decisions.

For those of you who haven’t seen it yet, here is the video of Joanne Milne – the same age as me – being ‘switched on’ for the first time. It has ‘gone viral’ simply because it shows that joyous instant of intense human emotion – one that most people will never experience or understand – when a life changes forever. Having seen two of my children go through the same thing, albeit deprived of the adult understanding that adds significance to the moment, I can share and understand every tear. I cannot watch the videos of Alice and Ollie being switched-on without crying like a baby. I am so glad Alice’s mummy had the chance to say her bit on the BBC World Service this evening about the wonder of CIs and the wonder they have brought to our family.

Every day in my house is a small miracle and we are so very thankful for the fact our children now have choices: There is nothing, now, they can’t have because of our choices. They can achieve anything they like, they can attend whichever identity they please and they, most of all, can make these decisions for themselves.

I, for one, will always thank Graeme Clark for what he has done for my family…

 

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