Forum

I have thought for quite some time about creating a forum/discussion group where people can chat about ANSD and CIs. Particularly one for us folk in the UK as the Yahoo group is pretty US centric – that’s not to say it should be solely for us Brits! So I have done just that. If you follow the link HERE it will take you to the forum. There is also a new tab at the top of this page. I am sure it will take a while to get going, but as we get so many questions through the blog, most of which we have no answers to, I thought it would be really useful to have a place to discuss our hopes and fears. Let me know what you think.

You’ll need to register first, but do pop along and say hello.

Auditory Neuropathy Spectrum Disorder

Now there’s a blast from the past.

When we started this blog, we did so for largely cathartic reasons. Our heads were spinning and we had no idea where to turn. There was so much disparate information on the internet, so many different opinions that, for our benefit alone, it made sense to pull it all together in one place. In doing so, it seems we have managed, in some small way, to help some others who are going through what Alice and we went through. It certainly feels good.

This got me thinking. When Alice started her journey this was all about ANSD, or AN/AD as it was back then. We found out everything we possibly could about the ‘condition’ and through a bit of luck and no lack of determination, we had the chance to talk to some of the world’s leading authorities about it.

And now Alice has two new ears. ANSD seems something in the past. Granted, we still need to be aware of it as, even with her CIs, there is no guarantee that she doesn’t still have fluctuating hearing. That said, she seems to be progressing well.

I guess this is the crux of it. Now she has CIs, much like any other child with more ‘traditional’ forms of hearing loss, her issues are the same. In some senses, she now has a new ‘condition’ to be dealt with – and that condition is the limitation of her technology.

There are days – and believe me there are many of them – when life seems….well, normal. Bar having to clamp a whole load of electronics to Alice’s head every morning, we go about our daily lives with very little thought to her specific needs. I wonder if this is the right thing to do? We are so ‘AV’ in everything we do now that, in some senses, Alice is receiving constant input and ‘therapy’ without us thinking about it.

Is normality a good thing?

I guess Alice will never be ‘normal’ in that respect, but to us, because of her technology, her wonderous determination and the help we have had along the way from AV, life is just that……normal.

I think that’s where we wanted to get to. Does this mean we are winning?

Alice has adjusted to CI number two remarkably well. She wears it every day without complaint and is showing signs of responding well to her Lings with it. She is progressing through her maps quickly and the terror of her surgery seems a long time ago now. School is now finished for the summer and Alice will be going into proper school next term (reception). She now has her school uniform and, even if I do say so myself, looks beautiful. She is so excited and so are we.

To anyone else on this journey, particularly if you ar just starting out and wondering if your life will ever be the same again, Alice is testament to that. She is my wonderful daughter who has got through this because of who she is – an amazing young lady. Life, for now at least, feels pretty normal and ANSD………….well what was it all about anyway….

Alice the 'Big Girl'

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