My name is Kian, I am 15 years old. I was born with a condition called Ocular Motor Apraxia. This is an extremely rare eye condition which means I can’t move my eyes as quickly as everyone else. I also have a restricted range of vision. To compensate this I make very fast head thrusts which makes eye movements easier. This condition also causes hypermobility and low muscle tone which means my joints have a large range of movement and I am very flexible. Due to this I have to work harder at school and I get tired more easily than others would.
I often fall over my feet and other objects when I am walking somewhere. Stairs or steps are a problem for me as I find them difficult and have poor balance. Sometimes when I do fall I get minor injuries but most of the time nothing major happens. My friends, the bodyguards, stick up for me. When I walk with my friends at lunch time, or any other time, I am a penguin who falls behind them quite a lot but they wait for me. Whenever someone in the school is saying something about me or purposely trying to annoy me, my friends stop them usually by telling them to shut up. The only time I do like doing football or other games is at the Astroturf at lunch. When I’m over there no one can annoy me. I have a good group of friends and whenever something happens they stick up for me quite a lot.
From nursery age I have had help and support from my vision support teacher Jill. I still have monthly visits from her. I was worried about going up to secondary school because in my primary school I grew up with everyone but in secondary school I didn’t know anyone. I was also worried because I knew that a lot of people would make fun of me. I also didn’t want to go there because I thought it would have been harder to make friends since they didn’t know who I was and the problems I had. I was so nervous on the first day that there was sweat dripping from my head and I was shaking like I had to defuse a bomb. On top of all that my stomach felt like it was in knots.
In 1st year I didn’t go anywhere for lunch I just stayed up in the guidance room. The reason why I did this was that my friends went to the shop and I didn’t think I could make it back in time for the bell. I stayed in guidance that long that eventually my mum phoned the school to try getting me to stop going there. Eventually I stopped going there and went with my friends. The first time I went to the shop I was quite nervous that we wouldn’t make it back in time but we did.
Ever since I was even at primary school I have used my laptop this meant I learned to touch type from an early age. I really struggle to write with a pencil because my hands are bendy and they begin to hurt after a while. I find it hard to do some subjects at school such as Tech and Design, Cooking, Graphic Communication and P.E. In one of my subjects I couldn’t use the equipment that I needed to use because of my hands. The teacher thought that I was just being lazy and that I didn’t want to do it, but the problem was that I couldn’t do it. I even asked the teacher for help but they just completely ignored me. The only people that helped me were my friends and the PSA.
In P.E I can’t play any team games because I’m too slow or I can’t see the ball because it always is moving. In P.E whenever I can’t see the ball, I just try to listen to wherever people are shouting for the ball, and then I go over there. Whenever I do get the ball I don’t know where any of my team mates are because I have to focus on the ball. I also always get picked last for whatever team I’m in. When I get picked last now I don’t really care, but before I got really annoyed and I felt I could fight every one of them.
I am now in 4th year and whenever someone tries to make fun of me, I just don’t care. I don’t really get annoyed at it because I’ve probably heard it before. I also have a 9 year old brother with the same condition. I try to help him a lot considering that he has worse mobility than me. It’s almost like he’s an exact clone of me I know how he’s going to feel when he goes through school so I help him whenever I can.
Whenever he is even just trying to go up the stairs I help him. He has a wheelchair to get around because he finds walking extremely hard and very tiring to do. When we are out I offer to push his wheelchair and most of the time I do. When he is walking he needs someone’s hand to hold on to, it’s mostly my sister but sometimes it’s me. Even when we are in the car I put his seatbelt on for him. I know what he is going through and what he has yet to go through and I’ll support him in every way I can. If it’s not me supporting him it will be someone in his school or in my family.
If I could change anything in the past it would be to react differently with the lunchtime thing. I would not take things so personally when people made fun of me, I just wouldn’t take it to heart and not get so annoyed at it. I have learned to be a caring person which is why I help my brother.
Now in school I actually enjoy the choice of subjects I have made. I concentrate now on things I’m good at such as Computing and Admin instead of doing subjects I struggle with. I am hoping to study Admin in college next year and nothing will hold me back. I have realised now that it doesn’t really matter what other people think of me. Despite all the problems and difficulties I face day to day, I still see myself as a typically normal 15 year old boy and would like to be treated like that.