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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss


Tuesday, 30 September 2014 01:00

My Sense Presentation - First As Sense Ambassador

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I was just 12 when I was diagnosed with usher syndrome and I have learnt so much, but of all the things I have learnt I would say the most important have been Support and Friendship.

I think I had to experience bad support before I really knew what good support is and now not only do I want it but I want all people with usher to have it.
It is for this reason that I began speaking out, not just for myself but for others and I will continue to speak out whenever I have the opportunity because awareness of our needs is key.
Deafblindness is rare and I'm glad it is, but for those of us with it it is very difficult.
Sadly there are very few really experienced to work with us and often worse, too often those who work with us don't listen to us as it is only us who really know what we need.

I am not an expert on deafblindness but I now understand myself, I've had strong positive parents supporting and fighting for me and now, having just started university I have started fighting my own battles and realise just how hard they worked for me and they didn't do it all alone.
There wasn't much help easily available but Mum found it, when things got very tough and we didn't know where to turn, there was Sense who were able to educate others and over the years their input here and there behind the scenes has been invaluable, however, their resources are limited so the next form of support I found was through social networking with others with my condition or similar and I found not only lots of support from all around the world but lots of friends too and from this commonality came the confidence to do more – we are all different but we are all walking similar paths.

I was very honoured to be approached and asked to be an Ambassador for Sense, I really had no idea why they wanted me but feel proud to be associated with "The Deafblind Charity" and I hope to be of some value to them and their members.

Thank you Sense.

Lastly I would like to say a little about myself, hopefully to inspire others a little.
In 2011 I experienced a mental breakdown as a result of others assuming they knew me better than I know myself, they ground me down until I couldn't cope. As a result I had 2.5 years of counselling whilst studying for my A levels, it was very tough but I never stopped believing and being determined to achieve.
I am very proud to say we fought for support in my sixth form college, they knew nothing about my condition but they had a "can do attitude" and they listened, Sense played their part behind the scenes and at the end of my happiest years since primary school when I had perfect sight I completed my A levels with 2*s with distinction and a C, I was disappointed with my C but that is the perfectionist in me.
I got my place at first choice university and two weeks in I am fighting for the right support and in the process raising awareness of usher syndrome.
It is tough again but it will get better because I will make sure of it, if not my parents will be there to assist.

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