NDCS and us

When we were told, at 3 weeks old, that Abi was deaf we were shocked. My pregnancy has been pretty uneventful, her delivery via caesarian as she was breech and would not be budged went just fine, and we felt like we had really dodged a bullet when the heart issue they thought would require surgery didn’t unfold the way they expected. In comparison failing her newborn hearing screening was nothing (I should say not getting a clear result, they can’t have the little darlings failing anything at that age). The woman who administered the test gave us a laundry list of reasons why it hadn’t shown a clear result and told us follow up tests would be a mere formality.

Hmmm. That wasn’t quite how it went. I remember that day in November so well. My first question in response to being told she was deaf was to ask whether it would stop her scuba diving. Our lovely audiologist later assured me that wasn’t the daftest questions she has been asked when giving a diagnosis but I suspect it’s right up there. That day was the start of a beautiful friendship with our wonderful audiologist but also the with National Deaf Children’s Society (NDCS) They’re one of those charities you probably haven’t heard of unless you or someone you know have needed their services. We hadn’t until she suggested we take a look at their website for their numerous useful publications. Nevertheless their services are invaluable as we have found out over the last few years.

They provide all sorts of information and support for families, and I can’t begin to tell you how important they have been in our lives to date. I don’t think we’ll ever repay them for what they have given us, although we have tried to raise money to support their work in a number of ways. This weekend madam and I had the pleasure of attending their first South West family weekend. Our first weekend with them was when she was about 6 months old, it was a weekend for families with newly identified deaf children, and we learnt so much and were delighted to spend time with other families in the same position as us. This weekend I was attending as the parent of a pre-schooler, mired in the middle of the statementing process.

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The weekend was held in a wonderful location, Hannah’s at Seale Hayne near Newton Abbot, and comprised of a mix of family activities, workshops and 1:1 information sessions. The workshops included invaluable topics like Communicating with your child (sounds like it should be straightforward but there is a dazzling array of options which can be mixed and matched to suit your family) and the Deaf child at school. Getting advice on the mindbending Statement of Special Educational Needs was also pure gold. However possibly the most important aspect of the weekend was the socialising.

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This may sound like I am snubbing the work NDCS does but in fact I think they might be pleased to hear this. Parenting a child who is “different” can be challenging and lonely. Being a child who is “different” ditto. That’s why it’s so important to spend time with other families. Although we have friends with deaf children who use various technology and different forms of communication there is nothing quite like being in a room full of kids of all ages wearing aids and cochlear implants, and who are signing, cueing and talking. What better way to make them realise they are far from alone. And as a parent it’s a brilliant to compare notes with other people and find out nuggets of information that they have been able to mine from the reams of information that is out there as long as you know where to look.

I could write an epic singing the praises of the weekend, which is totally free to the families, and NDCS but I think suffice it to say that the highlight was seeing my gorgeous girl making new friends, and in particular walking hand in hand, hugging and chatting with another deaf 3 year old who we will definitely be meeting again in the future. The work NDCS does is valuable on so many levels and I have left feeling reinvigorated and ready to take on the world again. It’s definitely time to start planning another little fundraising effort to try and say Thanks! NDCS is a great source of information and support, and long may they continue their good work.

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