I dubbed today “vision day” as it involved a trip to the opthalmologist for Gilbert’s regular check-up, followed by a visual scanning training session with Vision Australia.

The day didn’t get off to a great start – we misplaced Gilbert’s glasses which are sort of crucial for a visual appointment. I still can’t find them so I hope they will be found somewhere, somehow, soon. So instead we went with his backup pair.

I must say his glasses have been known to be found in the strangest of places – one year, after giving up on looking and purchasing a new pair, we found his missing glasses when we took down the christmas tree! This probably explains why he has had so many pairs over the years…
But I digress.

Gilbert was also stressed this morning as he was due to have “the drops” in his eyes. Every second visit he has drops put in his eyes to dilate the pupils so the opthalmologist can have a really good look at the retina and the optic nerve. It also helps him get a feel for whether Gilbert’s optical script is still accurate or not.

Thankfully for both of us, they decided to dispense with the drops today so we were saved the protest and the meltdown and fight to get those drops in his eyes. I am not strong enough to hold him still and I also had the girls with me too – I gave a silent prayer of thanks that we were all spared.

Even without the drops, today’s appointment confirmed that his vision is relatively stable. It remains around 6/60 (20/200 in imperial measure) which is classed as legally blind, although it can sometimes vary depending on his mood, whether he is fatigued or on his level of engagement during testing. It can be frustrating, particularly when all I want to know is – what, exactly, can he see?

The Snellen Chart below, shows the grades of visual acuity ranging from normal vision at 20/20 (6/6) on line 8 through to 20/200 (6/60) on line 1. According to the opthalmologist, Gilbert can only read the top line when he is tested with this chart with his glasses on, in normal testing conditions. This result is not a surprise but a little piece of me still grieves for him every time it gets confirmed.

image source

This simulation from Annette Ferguson gives you an idea how it might feel to have albinism and to be legally blind – it’s quite frankly scary, isn’t it? Sure you can see fuzzy words but the strain of having to concentrate 24/7 to try to make out anything at all, that’s got to be hard. And that’s what my son has to deal with every single day.

We followed up the opthalmologist appointment with Maccas for breakfast (why not?) and then met with Katherine from Vision Australia to find out about visual scanning training. In essence, it’s all about teaching Gilbert to start looking systematically about him to better scan his environment and identify potential hazards.

Currently, he looks at his feet and relies on being guided by others to get around, particularly when in unfamiliar places. Wearing a wide brimmed hat to reduce the glare and protect him from the sun makes it even harder for him to see much beyond his feet so hopefully training him to more proactively look around him will increase his overall mobility and orientation.

Unfortunately, due to the stress of worrying about the drops and the strain of waiting at the opthalmologists, Gilbert would not cooperate with Katherine and refused to participate. So I let him cool down and play his game (where he wanders around with the belt from my dressing gown and narrates his own adventure) while I learned some techniques to make the training a bit more fun and effective.

I am going to trial printing off pictures of the characters from Lego Ninjago and place them in various places on the walls of our hallway. I’ll encourage Gilbert to walk in a straight line and identify all the characters that will be placed above his head, down low near the floor, on the left and on the right, at various levels. He will need to search up and down and left and right, systematically, to find them all. To make it more interesting I plan to encourage him to create a story as he goes – that should be an effective motivator for him.

Other ideas Katherine suggested was to place single letters along the hallway to encourage visual scanning and get Gilbert to spell out words with them. For younger kids you could use shapes and brightly coloured laminated paper instead. Another great idea (but not for Gilbert who has a bit of a balloon phobia) is to blow up a balloon and let it go, encouraging the child to follow the crazy path of the balloon as it deflates. For older kids, getting them to have a go at a crossword or sudoku puzzle will also help train them to scan for letters or numbers in a more precise, efficient and systematic way.

So we have quite a bit to go on with. I’ll let you know how we get on but in the meantime I would love to hear about any techniques that have worked for you or your child to improve their orientation and mobility.