Mea Culpa. I lost one of Alice’s hearing aids last week.

Since January I have been ‘working from home’ on Mondays to look after Alice as her Nanny has now left us. I made it as far as the second Monday before, whilst leaving St. George’s after one of Alice’s many appointments, I lost one of her aids. I tried my hardest to blame everyone else for this – Alice’s mummy, the dog, Alice etc. but unfortunately this was to no avail.

New hearing aids it is.

Friday saw the second of Alice’s SLT assessments. We have now had four of her five audiology assessments, both of her TOD and SLT assessments and most of her general medical scans and assessments. All that remains before a decision is made is one more audiology and her eye test. We are finally getting there!

I also found out on Friday that we have a date for her review meeting where they will approve her for a CI (or not as the case may be) – March 6^th. Surgery should be 4-6 weeks after that!

So with my head hung in shame, Alice was fitted with new aids on Friday. This time, as even despite her ANSD, the team have confirmed reasonably consistent ‘Severe’ results, they have cranked them up to 85db. We are still waiting for one new mould, so Alice only has one aid at present, but it does seem to help more than the old ones (unsurprisingly).

Funnily enough, while Alice was having the new mould taken, David Sevadurai came in to tell Eleanor, the CI Manager, that his CI surgery that morning had been postponed as the patient had drunk some orange juice and couldn’t be anaesthetised. And with that it all suddenly seemed so real. Somewhere in St. George’s were another set of parents and a child for whom this was the big day – the end of all the waiting – the end of the countless assessments and the start of………well who knows? We can only hope.

One thing that we are acutely aware of these days is our continual use of the word normal.  When describing Alice, it’s a case of she’s normal except for her hearing, we want her to go to a normal school, we want her to do normal things and we want her to communicate with normal people. 

We also accept that Alice is not normal.  If  things go well, in the next couple of months, she will have an extraordinary amount of technology permanently embedded into her head.  This is clearly not normal, but we want her to feel that this is special but not unique. 

This is where the various support networks come into their own.  We are starting to get into contact with other families like us.  We’ve joined CICS (Children’s Cochlear Implant Group) and we now go to the NDCS South West London meetings.  These are hugely important for all of us.  Firstly, instead of being strange and different, Alice will be part of a wider community, within which she is anything but unusual.  In time, we hope, she might make a friend who also has her own special computer in her head and they can share things together that we as her hearing (non-computer-head) parents will never know (dare I say dating, university and others) …..

Also we can talk and share our experiences together to make things better for all our children. 

I am amazed of the strength and friendship offered by the various yahoo groups (ones for AN, CI’s, UK deaf children, UK CI users and more) and what we learn from all.  There are now adults out there who were implanted as children and the perspective that they and their parents can offer is invaluable.  Top tips on habilitation, special passes to Disney land and even anti static sheets will all have their place, as will (at some stage) the annual CI kids ski trip ! 

We have our down moments, our moments of quiet reflection, then we hear of children with multiple problems or those achieving amazing things and perspective comes back.