Author Archives: Claire aka Mummy

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.

Fragility…

September 30, 2013 By in ANSD, auditory neuropathy spectrum disorder, Cochlear Implant, deafness, hearing loss Tags: , 2 Comments

All children are fragile, whether it’s physically or emotionally.  All parents want to make sure that their little ones are safe and happy at all times.  Everything we do, we do because it’s the best that we can for them.

All three of our children are fragile in their own way, Joseph is a sensitive soul and Alice and Ollie have thousands of pounds of sensitive electrical equipment embedded in their skulls.  We as parents try and balance normality with protection.  Today, Alice and Joseph went happily into school for another day of learning and wonder.  I smiled as I waved them both goodbye.  Half an hour later, the difference between a normal child and a CI child became clear, Alice’s processor has a fault.  She instantly goes from being a “normal” child, to one with a significant hearing impairment.  Her confidence slips and I turn on the rescue protocols.

The spare that lies under a layer of thick dust 99% of the time has to go and get reprogrammed, the school nurse and Alice’s amazing LSA do their best to reassure and repair, but ultimately it’s a replacement job.  We are extremely fortunate that we have a spare.  Due to a high level of losses, our CI programme is out of spares, so without the dusty old processor, Alice would have lost her favourite ear for days…. School would have been a nightmare.  It never ceases to amaze me how much on a knife edge we live.

If any CI company is reading this, our real list of wants as parents is as follows ….

  1. The most robust processor you can make (water, sand and falling over are all part of a normal life as a child)
  2. GPS and other localisation technology.  Ollie likes to crawl into small spaces and sometimes we find processors under drum kits, beds and other corners.  The park, theme parks, the beach and public transport are our idea of hell, 3 children, 4 processors, tickets, keys, phones it’s a lot to think about
  3. Spares – Cochlear Europe is 10 mins drive from Alice’s school, the MAPs can be carried on a USB and Alice could have been up and running in 10 mins.  Remote mapping helps those of us with spares.  But not everyone can afford to have £6k lying on a shelf for an emergency.

And as parents we need to make better promises, we need to take care of our children’s ears and processors and not leave our CI teams short of processors for the unusual occasion when something does go wrong.

 

%d bloggers like this: