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Living With Usher Syndrome

November 29, 2010

by Molly Watt

Editor's Note: Molly has been a guest blogger on this site in the past and wishes to share more of her experiences. Her past posts have been among the best received on the site. It's no wonder. She was recently named 'Young DeafBlind Person of the Year' by SENSE in the United Kingdom. As always, we're thrilled to welcome her involvement.

20th August 1994, a very special date might I say. I'm Molly, I'm 16, I have one younger sister and two older brothers, and I have lived in Maidenhead all my life. No, it doesn't end there, behind all smiles; there were a few complications! At 18 months old, as cute and cuddly as I was, mum and dad could sense there was something that wasn't quite right. Mum was getting worried that I wasn't responding when my name was called. So I was taken for some hearing tests, and it proved I was in fact moderate-severely deaf. This was a tough phase for my parents, they were distraught, I was too young really to understand any of it, would you know what you're doing at 18months old?

So I was given my first hearing aids, which I detested right from the beginning, I would hide them under the sofa, In the toilets- anywhere but my ears! I attended Wessex nursery, at 3 years old, it included a hearing impaired unit. This is where I met two girls both deaf, and I remained very close to them both, one of which I've lost touch within age, and the other I now attend Mary Hare with. I grew up with a hearing family, so I had always been a very oral child, with many hearing friends. After nursery, I then went on to go to Oldfield Primary, no hearing impaired unit, no hearing impaired friends. I had a teacher for the hearing impaired, called Jane Perry, I bonded with her very quick, and we had a great relationship. This is of course, when we had our one to ones, I developed more oral skills. I was always the 'odd one out' but I grew up with that, and got used to it. It never occurred to me that I was different to the others at a young age. I always quoted, "I'm not different, I'm unique." I mixed in very well with all hearing people, and lingered in the hearing world.

Mum always wanted me to grow up in the "real world," she wanted me to be able to communicate with everybody, not just deaf people. I was happy with that, I was always happy, as far as the eye could see, I was coping well with my impairment and lived life like any other, could it really get any worse?

Well, not for another 6 years! A few more years later, when I got toward the end of my Primary school years, at 11 I started recognising some difficulties in my sight. I started walking up to the white board to read what was written, I felt reasonably clumsier than before, and I was constantly getting headaches. I reported this to my parents throughout year 6. Our instinct was that I might of needed prescriptive reading glasses to release strain of the eyes. At the time, I quite liked the idea of wearing glasses! So we went for a routine eye check, and shockingly it lasted hours. There I was perched on this big chair, with not one, but many eye opticians, gawking intently into my eyes, repeating the same tests with every possible instrument that had in the room! What was I thinking? I wasn't sure, I didn't understand it, I'd never had an eye check before- many hearing tests, but never an eye check, maybe eye checks were supposed to be considerably longer? After a long tiring few hours of remaining present in Vision Express, it was time to let my parents know they had found something peculiar, something they had never viewed before. I was too busy choosing frames for my reading glasses with my younger sister, too busy to notice my parents having a very sensitive conversation with the optician. That was all a mystery for a while, I still had no clue, and just finishing year 6 meant I had to make a big decision. So I had other things on my mind then; which secondary school? Decisions are never easy. Before long, I chose to go to Cox Green School, a mainstream school, that was in fact round the corner from where I had attended nursery, so Cox Green had actually seen through a few deaf people and had experience, perfect! ...Not for long, when people in my year were becoming 13, they had big parties, I got invited to lots of them, I thought, "Oh wow, a party, a chance for me to socialise and have a bit of fun!" After going to a few of them and realising my eyes were starting to affect my confidence. One party I remember, I walked in and it was pitch black, I recall thinking, "I'm not going to enjoy this," I was struggling to walk across the hall without someone's arm to hang on to, I felt so overbalanced and unsafe that I was going to fall off a step any moment.

This isn't normal? Why can't I see people's faces? Why do I trip up on steps? As a result of this, I'd return home in tears, devastated, and stopped going to parties altogether. After being at Cox Green 2 years, things were getting rather tough. By then, I had an idea that I had some sort of eye condition, that I had restricted sight and poor vision in the dark, so I had extra help for modified papers at school, and I relied more on my friends to hold on to me when I was out and about. After having many meetings with visually impaired teachers as well as hearing impaired teachers, I got a bit curious. I was falling over at school, finding it hard in crowded places, I started to isolate myself at home, I didn't have much understanding of what was going on.

At home, I began to question my parents about my scenario. It all got out one day, mum and I, have a really close friendship as well as a mother daughter bond, so when It was out, I felt comfortable to turn to her and talk to her about how I felt. I recall being sat in our car, mum started asking me what I could see our of my peripheral side, "Can you see my hands? Can you see the steering wheel? Can you see your window? I told her what I could and couldn't see. Mum went silent, was she just concentrating on the road? I thought. I thought this was a good time to ask about my eye condition, I wanted to put a name to it. It all got exposed, emotionally. Not only am I deaf, but I'm also a victim of blindness. Deafblindness. "You're just extra special!" I tend to hear a lot.

Cox Green was starting to illustrate they were beginning to struggle with providing the right support. It wasn't their fault. Why couldn't I just be easy like the rest of us? No, I had to be complicated!

After a lot of forward thinking, we looked around two schools. One was Newlands Girls School, didn't like the idea of an all girls' school, so that was out of the question. The other was Mary Hare School for the Deaf. I visited the school for a week; it did have its disadvantages, a boarding school? Be serious!

After being there one week, I was stunned. I felt that being there would finally blend myself in and be like everyone else. Year9 I went to Mary Hare, a new start, a new positive chapter and new friends.

I was tearful most nights; I hated being away from home. Where I had been bought up orally, and all the students in my year were BSL signers, I couldn't make friends as easy as I thought I could. Great, just what I needed! It took me a year to settle in properly, I eventually made friends and picked up sign language, just so I could communicate with everyone at the school. I had, and never will, have any intention, in taking up sign language, I was bought up in an oral world, and that's where I'll stay. I learnt sign language to benefit my peers. It took a very long time for everyone to adapt to how things were in my situation, both teachers and students had to get to know me first, before being entirely aware. But now everyone is aware, my life is so much easier with the right support I'm getting. Being at Mary hare, doesn't make me feel I am one of them, I am oral, I have quite a different outlook on life to the others. I'm not proud of being either deaf or blind, that's just unfortunate, but I am proud of who I am, as a person. I' m me, and I'll always maintain that, life is too short to please others, being myself and being positive is the only way forward- even if I'm going blind. I'm now a day pupil at Mary Hare, I only live 40 minutes away, I get a taxi to and from school, I'm happy with that. Now being in Year 11, it's definitely a harder year, but one of the highlights would be work experience. Now, where was I going to do that? My first instinct was to go to my old primary school, I knew of the head teacher very well, and had always welcomed me to go in and help out. The school had said that it had to be arranged specially, as it was outside Newbury. I was desperate to go there, so within a couple of weeks, it was all ready to go. My job interview wasn't at all nerve racking, I felt completely calm, as I said, I knew Mr Jarratt, the head, very well, he had taught my brother, and became head when I was at that school. He mentioned that I was to be placed in year 1 for the whole week. I was a little disappointed, I was hoping I'd be in one of the slightly older classes, where their English was more understandable and they were just a little bit more human!

Surely a week of work experience is far more exciting and easy going than a normal school week in Year 11, I thought to myself. Boy was I wrong!

There's me walking through the old school gates I used to walk through, all those years ago at primary school, was I excited? I didn't know, was I nervous? I didn't think so, I knew the head of Oldfield Primary pretty well, and so I was in good hands.

"Morning Molly, go straight in, sign in, and head to your first lesson." Cool, I thought, nice and easy. So many memories flew right back at me as I entered the year 1 classroom. My first day was lots of fun, but I was completely and utterly shattered by 3 o clock. The class was filled with tiny dots, -smaller than me! All buzzing with inquisitiveness and giggles. I got told that I was to work on one particular table, and to participate with a small, sweet boy named Samuel, "He's just a very young five year old" I recall Mrs Brooklyn, the year 1 teacher, saying, "No problem!" I was fine with that, I felt so comfortable in their presence. "Today and tomorrow, we are going to be talking about fireworks! Have any of you lot, ever seen any fireworks?" Within a split second, all the class had their arms up, incredibly excited and desperate for her attention. They got out their writing books, and had to write three sentences, I saw... I heard... I felt... And being 5 years at the least, their spelling and vocabulary were very basic, so I was pleased that I could easily help them out without fail. As I got to know Samuel better throughout the week, I realised I had to do his writing for him, and read out whatever I wrote, I wanted to make sure he was part of the class as much as possible, no one likes being the odd one out, I would know, from my own experience. The children never failed to make me laugh, I forgot how easy life was in those days, I so badly missed those days, with no trouble, where all you had to do was cut and stick, and play in the sand! By the second day, I was so proud; I was taught how to use the photocopier! The whole staff were so friendly, some of which taught me in the past. Every lunch time they asked me, "where's your lunch!?" It was like having thirty paranoid mothers! The fact was, because key stage 1 finished for lunch fifteen minutes earlier than key stage 2, I had already finished my lunch by the time all the rest of the teachers came in the staff room for their break, besides, I would never forget my food! I helped out both the teachers and the pupils in year 1, it was an interesting experience, and now I have developed more of a plan for after my school years; I'd like to stay on and do Year12 and 13, then do a gap year, and go into different schools to be a teacher assistant, just to see if I want to go down that teaching path. I feel better now having more of an idea of what to do. The week had flown faster than I wanted it to, before I knew it, it was Friday!

I bought in some stickers to hand out to all the pupils, just a personal gift from me to them, for being a great class to work with. They were overjoyed. It was sad to leave, especially because I knew what was ahead of me: Saturday school!

I thoroughly enjoyed my week, and felt physically exhausted, little ones are just simply shattering. But all in all, I loved it there, felt really relaxed not pressured at all; it all came to me naturally. A lot of the teachers I spoke to at break times in the staff room, really boosted my confidence, one of them, had been my TA (Teaching Assistant) all through from Reception to year 4, commented on how my speech had improved. None of the new teachers noticed I was deaf, until I told them.

Mum and I have been working hard to raise a profile of my condition, and due to my achievements, (I won the 'Young DeafBlind Person of the Year' award), I was in The Maidenhead Advertiser a few times, my Dad also worked his socks off and raised a huge sum of money for doing the 3 Peaks Challenge, because of all this we had been in our local papers and also 'Chat' magazine.

So I had a lot to talk about, some were amazed and gob smacked by my achievements. Mr. Jarratt had also pinned up some of the articles on the walls of the staff room. I felt very proud to be me, and to be able to talk to people about it too. After this experience I've felt confident enough to go into schools and help out to the best of my ability, maybe help out the less able, because I grew up being one of them, I felt it came naturally just helping out. I think doing a gap year will help a lot, because then I could experiment with what age groups, and whether I'd like to specialise, like being a 'teacher for the visually impaired' or maybe a 'multi-sensory impaired teacher'. I can see myself doing something along these lines, in the future.

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