Can I Tell You About Nystagmus?

Can I Tell You About Nystagmus?
Nadine Neckles, illustrated by Vikas Upadhyay
Jessica Kingsley Publishers

I’ve only ever taught one child who had Nystagamus (due to his albinism). Now having read this excellent little book – the latest in the ‘Can I Tell You About series’, I feel ashamed about how little I really understood of the condition.

Herein a girl named Amber talks in a user-friendly manner about nystagamus -her ‘dancing eyes’, what this means for her in particular and about how she and other children with the condition will experience it differently, although they may share certain similarities such as taking longer to learn things. (This doesn’t mean they are any less clever than others however.)

We hear about Amber’s diagnosis (her eyes jiggle from side-to-side);

how she has to have regular eye check-ups; how she has to carefully adjust the way she sits to watch TV, preferably sitting right close to the screen; the need for her to wear glasses to prevent her ‘seeing double’ as she also has a mild squint.

Starting school presented a challenge for Amber especially the frenetic-seeming playtimes. Amber’s school has made accommodations for her condition such as adding yellow tape to the stair edges, doorframes and potential places of danger; and her mum explained nystagmus to Amber’s classmates.

When in the classroom she has a special place to sit, is never asked to share a book or computer screen and has work printed on coloured paper.

Reading itself brings its own set of challenges but again there are aids to make things less tricky for her. Depth perception is a particular challenge, so ball games, (and other things requiring rapid hand-eye co-ordination), gymnastics and running are ‘tricky’.

Of course frustrations occur but Amber’s friends are understanding and Amber herself is bold, intelligent and resilient, refusing to let nystagamus define her.

The book concludes with some information for adults, an outline of associated conditions, an important checklist for professionals, a glossary and a list of recommended resources.

Easy to understand, this book, (written by a special needs life coach and mother of a child like Amber, with nystagmus and Chromosome 18q) encompasses all the important aspects of nystagmus making it an ideal introduction for anyone wanting to learn more about the condition be they children, parents, carers, teachers, and other professionals. Line drawings by Vikas Upadhyay show Amber as the sparky individual the author presented.

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