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.