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Monday, November 29, 2010

Living With Ushers Syndrome

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.

Wednesday, November 10, 2010

Too Early for That

by Mark Dunning

My daughter’s vision is getting worse. It shows up in a lot of little ways. She plays street hockey with my son but can’t see the ball as it comes to her (to the screaming frustration of her ever sympathetic little brother). She’s told to pick up all the Legos, which she does in good faith. When told she left some behind, she sweeps her hand across the floor like someone searching for a lost earring under a bed. She needs an elbow to get from the car to the house in the dark. She knocks over more glasses. She trips over the dog more often. She walks in to more door frames than she walks through.

I see all of these things, I expect them, I internalize them, but somehow I don’t believe them. My little girl can’t really be losing her eyesight. I hope that it’s my imagination, delude myself to believe that she has always been this way. I just recognize it now that I am aware of her diagnosis. It’s a bias, not a reality. It can’t be reality.

Then the school calls. They notice that she is holding her books a little bit closer. She is missing lines on quizzes, skipping sentences when she reads. It’s small. It’s subtle. Her grades have not changed, but they will. My daughter needs more help and the school wants to offer it. It would help them make the case to the pencil pushers and green eyeshades if they had her latest vision tests. You know, the ones that will inevitably show that her vision is declining, that will confirm what we all know to be true. The last results we have were from 18 months ago. Has she had any tests recently? No, huh. And none scheduled for another six months? Any chance you could move up them up to, like, now?

No, I’m sorry, I can’t. Whether it’s right or wrong for her to have the tests, whether it’s necessary to get her the services she needs or not, she’s not having it. My argument is that it’s too difficult to reschedule. No, wait, my argument is that the ERG is too taxing for her and besides she really can’t afford to miss another day of school. I cite mouse studies and the effects of light on the retina and all those flashes in her unblinking eyes and it’s just too dangerous. I make most of it up.

No, I’m sorry. She can’t have the test. I don’t want proof that her vision loss is progressing.

I’m too scared.

…..

I recently met a friend for dinner, an adult with Usher syndrome. When I got home later than usual, Bella asked where I had been. I told her about my dinner guest. She asked matter-of-factly “Is he blind yet?” I was staggered by her lack of emotion as much as I was by her comment. I didn’t know that she fully understood the possible end game for her diagnosis. “Do you worry about losing your eyesight?” I asked. She shrugged. “Nah,” she said as she returned to her drawing of a horse, “it’s too early for that.”

Is it too early for that? Is it too early to worry?

I’m the level-headed parent brimming with life experience. I’m in charge of the ‘be carefuls’ and the ‘brush your teeths’ and the ‘don’t stick your finger in the sockets’. I’m responsible for evaluating the risk and protecting her welfare. I’m responsible for her future.

But Bella is twelve and she is living in the now. She’s as tall as her grandmother and she makes her own lunch and tacks up a horse and goes out trick or treating with her friends without a chaperone. In the dark. On a street with no streetlights. She doesn’t have time to worry about the future. It’s too early for that.

……

Families have a tremendous influence over the care a person with Usher receives. They drive to appointments and schedule tests. They talk to school systems and translate doctors. They encourage and discourage, cheer up and calm down. And they worry.

The trick is in identifying when certain emotions are influencing a decision to the point that it may no longer be the right decision. Usher syndrome progresses slowly. A day or two does not make a great difference. Heed Bella’s advice and realize that you don’t have to make any decision immediately. There is time. There is always time. Time to think. Time to sort through the fears. Time to be certain you are acting rationally and not emotionally. “I’ll have to think about it,” is always an acceptable response. Then go for a run. Take a bath. Write a blog post. Cry in the garage when no one’s around. Clear your head, drain the emotion, then decide what is best.

The reality is that while the disease will not change, your attitude about it can, and families and caregivers could do worse than to take their cues from the Usher patients themselves--even if the patient in question is only twelve.

Well, we’ve taken time and thought about it and we are not rescheduling Bella’s vision tests. We’re not rescheduling because missing more school at this point will only put her farther behind. We’re not rescheduling because she has access to professionals who can teach her techniques that will allow her to keep up, at least for now. We’re not rescheduling because the teachers feel they have a strong case to get her more services even without test results to back it up. But mostly we’re not rescheduling because my wife and I had a logical, sane, emotionless discussion about what was best for our daughter and decided this was it.

We’re not acting out of fear for the future because, like Bella said, it’s too early for that.