When I look back to when I was between 8 and 9 years old, I realise that my sight was already deteriorating. Stargardts is such a strange disease to pinpoint as it is so gradual and only affects the central part of one’s vision. I had no way of knowing that my sight was deteriorating as I could still read, write and run about. My grade 2 teacher was Miss de Nation (it took me 6 months to realise that she was not gender confused, but rather I was baffled as I thought her name was Mr Nation but she had such big bosoms!?) Anyway, I remember sitting in her class and looking at the word ‘aeroplane’. The clever children could spell each letter, but I could only see the first 3 letters and the last 2 – ‘aer????ne’. I learned to read by the shape of the whole word rather than seeing each letter. Sentences were much easier than lists of spelling words as they had a context in which to recognise the possible words.
I remember break time being very stressful as I could not always recognise my friends. I would ‘dwaal’ around until I recognised someone or until they came up to me. In standard 3 we all congregated at the end of the field to practice handstands and backbends. Those lunch breaks were easier for me to find my buddies as they were the ones who were upside down or contorted in some gymnastic position.
Mostly, to avoid the stress of having to recognise others, I tried to finish my work quickly in the class before break time so that when the bell rang, I would be ready to run out with my friends and not have to go looking for them.
I feel so sad for that little girl who did not know why she was so unsure inside and yet pretended so well that all was fine. My advice to parents of children with visual impairments in mainstream schools would be to help the child identify what the stresses are and help them, in consultation with teachers and fellow students, to implement practical coping strategies. E.g. meet at the lamp post in the quad. Or have a special whistle (a simple, short melody) to identify where the mates are.
We have a family whistle that has a related answering call that we use to find each other in shops or crowds. Our children learned to whistle or sing the little tune so that I could find them when collecting them from the playground. I wish that I had had a ‘find my friends whistle’ at school that I could have shared with selected friends (assuming that they wanted to be found by meJ ).
Later on, even into high school, I never let on that I actually couldn’t see people’s faces or recognise even close friends. It was a great security for me when a group of us used to hang out in a particular spot. When timetables changed or there were break time meetings it became really stressful … but I never let on. I was such a great pretender in my quest to be ‘normal’. I wonder if they ever watched me walk right past and thought I was just plain rude?
Anyway, I am grateful to those who stuck it out with me and helped me in the classroom. I had a friend in each class who volunteered to dictate to me as I could not see the writing on the board, even from the front of the class. Often we would get into trouble for talking and I would have to go after class to explain to the teacher why I wasn’t using my binoculars to see the board – a girl has her pride! Besides, chatty remarks were easier in between whispered dictation phrases as it was quicker than trying to focus on the board, adjust my eyes to seeing the page, and still think of something entertaining to share with my neighbour. I suppose it did cause some disruption in the class at times and would have been irritating to others who worked better in silence. I have not thought about the impact it may have had on my friends until now. I I’ll have to check in with my old school pals to find out how it affected them. I would love to hear their perspective on this as it has relevance for other visually impaired children in mainstream education.
I hope that this ‘hindsight’ will provide ‘insight’ to others currently in similar situations.