Tag Archives: deafness

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.

 

Meet Joe…

September 9, 2013 By in ANSD, auditory neuropathy spectrum disorder, Cochlear Implant, deafness, hearing loss, rugby Tags: , , , 3 Comments

Meet Joe Campbell (if you haven’t already done so)…

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Joe is our eldest child; our first-born son.

The reason we don’t talk about Joe in our blog (much to his annoyance) is that Joe has perfect (albeit selective) hearing. When Joe was born to the world I’m not entirely sure I had ever (knowingly) even met a deaf person. I’d certainly never considered that he would end up being the ‘odd-one-out’ amongst my children.

Joe, like all my children, is a star. He is bright, charming, witty, funny, polite and handsome. Everything you could want in a son. I am so very proud of him. Joe likes rock music, playing the drums and rugby. From his early days where Joe was capable of tripping over his own feet and, after four years of hard work, Joe is blossoming into quite the little rugby player; sticking his head where others fear to go and tackling anything that moves.

Why am I mentioning this I hear you ask? Well Joe is nearly nine years old and, in England at least, this means he has started playing full-contact rugby. If his rugby future is anything like my rugby career, this mean endless trips to A&E and a list of broken bones I’m not proud of.

I am a huge rugby fan. I have dragged my children around the country and have force-fed them rugby from when they were only weeks old. Joe, Alice and Ollie are familiar faces at Harlequins and, whether it’s because of the sweets or just the chance to spend some time with Daddy, they never turn down the opportunity to come along. When Joe was born, there was no doubt in my mind that he would be a future England Captain (along with all my other friends’ sons) and when Ollie arrived, he was earmarked to take over when Joseph retired….

And herein lies the problem. Ollie is deaf and bescause of the decisions we have taken, Ollie has electronics in his head. Whilst the decision will ultimately be ours in terms of the risk of Ollie playing rugby, his future, in this respect, looks (at the very least) complicated if not entirely clear-cut. various bodies (the BCIG and NDCS) have provided some guidance:

BCIG Guidelines

NDCS Guidelines

But at the end of the day, I may have to put these dreams on hold….

This is the first time I can see we will have had to make a negative choice for Ollie’s future  that is based on our decision to give him CIs….and I find that so hard to swallow. I know that various of Alice and Ollie’s CI team cringe when they hear what we let them get up to…boogie boarding with processors on, swimming in the sea and largely living their lives to the full; as we had always said, we didn’t want their deafness to define them or the decision to implant them to negatively change their lives….

I have no regrets at the decision. On balance, it’s a small sacrifice for the freedom we have given him. Ollie’s speech is coming on daily and he really is flying; the future looks very bright, but what will he do at school when others are playing rugby? what will he do when his big brother heads off on another rugby tour…?

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I’d love to hear from someone who has made it work.