Category Archives: ANSD

The best Christmas Present ever ……

January 7, 2013 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss Leave a comment

Whilst the world enjoyed the joyful celebration that is Christmas, in the Campbell household, Christmas was particularly special this year.

2012 has been a very mixed year, in some ways the most amazing with the safe arrival of Oliver, but then his deafness has also continued the hard work of the last couple of years. But without a doubt, one of the highlights of the year, was Alice’s final session at AV UK. After 3.5 years on the course, Alice graduated with above age appropriate language and we are cast adrift into the world. Alice just thought it was an excuse to eat cake and tell Rosie about her world, we were secretly shedding a tear of pride.

When Rosie told Alice she wasn’t coming back because she had learned to talk and listen so well, Alice just answered,”I know.………….”

We have created a self-assured little girl who is more than capable of speaking for herself. Leaving AV is really hard for parents. They have been the most incredible support and holder of our hands. I always tell people that the second call we made after family was to AV when Oliver was diagnosed. We needed them to remind us that it was all going to be ok. When problems have arisen, our concerns and emails are always answered in a calm and reassuring manner. We put our faith in them when they said they could change Alice’s fortune and to trust them – we did.

I would be more scared if I didn’t know we’d be back there in a month’s time for Oliver. By the time he graduates, we will be experts.

But in the meantime, Merry Christmas and thank you Santa for the greatest gift, Alice’s future.

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Our Pom!

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October 30, 2012 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder 2 Comments

We have been inundated since the programme about ANSD ran last week. Thousands of people have visited our little blog and we have had emails, messages of support and calls from all four corners of the globe.

We are humbled and astounded.

As I said to someone yesterday – we don’t have all the answers, but we are happy to point Parents in what is hopefully the right direction. In a world where the decisions you make based on ‘expert’ opinion have such far-reaching consequences, it is so important sometimes just to be able to talk things through with Parents who have been on the same journey, free of professional input or dogma.

That’s why we started our forum last year and why we have put together the Parents network. The latter is already proving invaluable to some new families on the journey. The forum was, sadly, less successful, but I suspect that is down to us.

We also have a Facebook group that we set up last year. We are not trying to detract from any of the other groups and forums that exist, but I can’t help thinking that there is still room for more, else we wouldn’t get so many emails and calls (which, of course, we are always happy to receive). So please do come along and join the group – say hi and ask some questions to get it going – I really hope it works. Do also pass it onto your friends and acquaintances.

By Parents for Parents, that’s my moto….The blog will also update on there from now on.

Parents of Children with ANSD Facebook Group