Nystagmus – Overdue Update Of My Youngest Son

My little boy is now 9 years old! Where does the time go?!
He is simply the most beautiful and kindest person I know.
He still wears glasses, and the prescription strength has increased over time, but has been stable for around two years.
The ‘wobbly’ eyes are still present, but the speed and rotation of movement have slowed down, and only really get worse when he’s tired or upset.
He has to have an eye test every six months at the hospital eye clinic, and he had genetic tests around a year ago, for a condition called Ocular Albinism. This does not affect his hair, eye, or skin colour, but could be the reason he has Nystagmus and low vision. I myself have Photophobia, which means my eyes become painful in bright lights, and this affects my night driving too, as I can get dazzled by oncoming vehicle lights. Photophobia is also a trait of Ocular Albinism, so there could be a link. We are still awaiting the results of the genetic tests.

Learning to read has taken more time, as a lot of books have print which is too small, or is buried amongst a lot of imagery, which can make it incredibly hard for his eyes to distinguish the text.
At home I have been using the Oxford Reading Books, which I first bought when I was home educating my middle son. These are the books that I use – Oxford Reading UK or Oxford Reading US

I have also sourced some brilliant ‘flash’ cards that are bold enough for him to read, and have meant I can assist in his teaching at home.

His reading level is that of a 6 year old I think, so he is not doing badly at all, and with my input at home, as well as the amazing work his teachers do at his school, he will be proficient within no time at all.
He can read common words with very little ‘sounding out’ ( c-a-t), and longer words are becoming easier for him to read, but he does sound them out more often, which is all a part of learning to read.

During his time at his special needs school, he has won two end of year awards – one for Sport, two years ago, and one for Maths, which was awarded recently.
For both of these, he received a small trophy with his name, the date, and the category he won in. He was so proud of himself, as was I.

His Maths ability is fantastic. He has a very logical brain, just the same as his middle brother
(who is 13 ), and they both find Maths an easy concept to learn.

There is always the thought that he should attend a mainstream school, as he has ability in a lot of areas, but he needs specialist input from the understanding and skilled staff at a special school to really help him flourish. His speech is still not 100% perfect, and he finds longer syllable words tricky to say, but his concept and understanding of words is exceptional. He amazes me with some of the tricky words he uses, and in the correct concept of the sentence.
I would also oppose him attending a mainstream school as I am always concerned about the level of bullying that happens – he would be a prime target, with pupils taking his items away, and him not seeing them do it, and not able to find it, because of his eye sight.
I know schools have to have an ‘anti-bullying’ policy in place, but bullying has always been around, and always will, and whilst schools can produce wonderfully worded policies, it will never be eradicated completely.
Here in the UK, mainstream schools are over-stretched and filled to the brim in each classroom, so W would not get the individualised education he needs, and he would be ‘lost’ in class.

If I were ask W what the worst thing about having Nystagmus and low vision is for him, I’m pretty sure his answer would be the eye drops he has to have at his eye clinic appointments! He detests them. He has gotten better with them, but is still frightened, and I have to do a lot of talking and reassuring for the preceding week, and on the day. On one of the days he had that, around two years ago, he was so distraught when they were trying to administer them into his eyes, that he screamed and cried, for twenty minutes, until they finally got the drops in, and then he refused to talk to me for the rest of the day. As he is such a chatterbox (he gets that from me!), it was quite peaceful during his silence!

W does use a white cane at times when we’re out and about, as in busier places, people can be very impatient and rude when he doesn’t move out of their way, and he has been pushed by adults, with one incident that ended with him being pushed into a metal display unit in a pharmacy shop. We were in a queue to be served, and someone behind us decided to get irate that he didn’t move forward three inches when the queue moved forward, so pushed W hard, and sent him flying into the shelving unit. With the white stick, the majority of people recognise what it represents, and tend to give him more room, with less impatience.

W has described his vision to me before, and one very insightful one was when he said, whilst standing at the top of the stairs – “it all looks flat to me. The ground isn’t any different from the stairs, as it’s all one level”. What he’s describing here is the occurrence of something called ‘depth of perception’. When he was little, he would stop when he was aware a rug or carpet or flooring changed pattern under his feet, as he had to make sure it was flat, and wasn’t a dip or rise that could trip him up or make him fall. When crossing the road, the kerb doesn’t appear to him as ‘going up’ or ‘going down’, (but as a continuation of the road and pavement) but he’s learned this, so is careful when stepping up or down.

To sum W up, I could use so many adjectives, and could write all day about his amazing ability to just be himself, despite his disabilities. I will be succinct however, and will say this – he is a bright, funny, intelligent, loving, kind, and thoughtful little boy, who I am so proud to call my son.

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