The end of an era…..perhaps

Hello all.

It has been a dreadfully long time since we last posted here. Life is very busy these days; three children at School and a business to run. I don’t flatter myself that people wait for the latest update on Alice and Ollie but I have felt something of a sense of duty to continue their stories.

I have often wondered when I would stop. I always said it would be at the point Alice caught-up with her hearing peers and, bar the daily charging of batteries and a few other small concessions, her hearing troubles needed no longer be something we talked about. That plan came and went with Ollie… Ollie is, of course, another story but he is ploughing along and never stops talking. Am I bad for wishing he would shut up sometimes?

Lots has happened in the past six months, or so, since we last updated the blog. Alice and Ollie have gone from strength to strength, the sky really is the limit for both of them. They have been the stars of a short film made for a charitable foundation – The October Club – whose support of Auditory Verbal UK has been and will be game-changing in allowing hundreds, if not thousands, more children to access AVT in the UK.

Our Facebook Group has nearly 600 members now from all over the world; a superb community of people who come and go often joining in a time of confusion and despair and then disappearing again as their little-ones take positive steps and life returns to ‘normal’.

And that, my friends from all four corners of the globe, is the crux of it. What is normal; what does it even mean? I have to admit that when we started this adventure all we wanted was for Alice to be ‘normal’ whatever that was. But, of course, Alice is just Alice, the same as Ollie is just Ollie. My beautiful, remarkable, children who fill me with pride and despair all day every day. Perfect children one and all.

Alice’s hearing loss never has and never will define her; doubtless Ollie will follow suit.

So where does that leave us?

Telling the story of two remarkable children who deal with the trials of every day life with the same vim and vigour as every other child. They sing, dance, laugh, cry, shout, scream and bring joy to everyone they meet. You’ll not find a prouder dad than me.

We never set out to offer advice on navigating the crazy world of ANSD. The world is vastly different to the one we joined nearly seven years ago. There is much more information at hand and technology continues to make the world a smaller place. We chose a path for our children and, even through the toughest of moments, our unerring faith that we were doing the right thing helped us get through. What was right for us and what has worked for our children may not be for everyone. We have always valued every different decision that parents make for their babies. All I can say is that Alice and Ollie are proof that there is a bright light at the end of, what can be, a very dark tunnel. It will always be alright in the end whatever the outcome.

Love your ANSD children with all your heart. Choose a path and give it everything you have got. Never take no for an answer and remember, when the chips are down, how much your little ones need you to be strong for them.

I wish you all the best of luck and do stay in touch.

I’m not sure there’s much more to say than that…..

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Fragility…

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.

 

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