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.
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.
I can’t imagine how hard it must be for Gilbert, though I am almost blind in one eye – I have limited peripheral vision . I had a partially detached retina as a child after an accident at school.
My son hates the drops too, we have them every 2nd visit to check his optic nerve too.
I don’t have any ideas sorry , I like the Ninjago idea you have though .
My niece when 2yrs lost her glasses and they also found them on the Christmas tree after they spent $$$ on a new pair.
My son is always losing his temporarily and sometimes it is my fault …not remembering where I put them at bath time or after swimming or some activity where he doesn’t wear them.
I’m glad I’m not the only one who has trouble keeping track of the location of glasses. I still haven’t found them BTW – hoping they will be found before school on Monday though!
Wow I just checked out that simulation! How frustrating that must be, I can’t even begin to imagine. My Dad has Retina Pigmentosa (I dont even know how to spell it). He is going bind, and has been most of his life. The rate of vision loss varies from person to person, and he has been fairly fortunate. He uses a cane now ,but he will be 70 next year. I have a cousin that was almost completely blind in his 30s. My 4 boys have a 50% chance of having this disease as I am a carrier of it. It affect boys, and not girls. So whereas I am a carrier, I don’t get any symptoms. It sucks that we just don’t know if the boys have it (chances are, one or more will have it). We could get them tested but have decided not to, as it is alot of stress we just don’t need yet, as there is nothing that can be done about it yet.
I am in awe of what you and Gilbert are going through. I don’t have any advice or experience in this.
But the Ninjago pictures sounds like a great idea though, especially seeing he likes making his own stories. They could have some great adventures!
The whole genetics thing does my head in. My husband and I are both carriers of the albinism gene and both gave one to Gilbert, hence his albinism. The two girls are most likely carriers too (50% chance) and we’d have a 25% chance of having another child with albinism in any future pregnancies. I can understand you not wanting to test your boys – we were offered testing for albinism for the girls during pregnancy and I felt I didn’t need to know as it wouldn’t change anything anyway – so I adopted the approach of what will be will be. I know this is slightly different to your situation but i do understand that sometimes knowing doesn’t make things any better, does it? Thanks so much for sharing your story, Sophie.
Goodness- so much for a small boy to handle. So much for Mum too! That simulation really makes you think. You sound like you have such a positive attitude about it all though. The Ninjago pictures sound cool!
He is so strong Robyn – every day I look at him and am amazed at how far he has come considering all the obstacles that are in his way. Looking at him makes it easy to be positive for him – if he can deal with it all, living with it every day, then it’s easy for me to do all that I can to support him. In the end, it’s that simple.
Oh wow,that’s hard for all of you. Once again though I’m in awe of your commitment and relaxed attitude towards it all. You seem to do it so well. (Not to say its not ok to fall apart ocassionally 🙂 )
Jess, there has been many times that I’ve fallen apart – I wouldn’t be human otherwise. But I do consciously try to be more positive than negative on the blog and in life – otherwise I don’t think that I’d be able to get out of bed every morning…it would all seem too much…
What a challenge for you both. But I love that you take it in your stride. Good mum. xx
Thanks Danya – I try to do the right thing although I have questioned myself many a time over years, but that seems to be par for the course for most mums. Thanks so much for coming by and taking the time to comment – it means a lot to me.
Oh, Kirsty! I had no idea! You’re amazing to keep on track and committed. It must be terribly hard when he’s in an uncooperative mood so I take my hat of to your persistence and patience.
Please do keep us all updated.
Thanks so much for linking up! xxx
Thanks so much Grace. He’s often in an uncooperative mood so I’m used that now! We printed out some Lego Ninjago characters today for his visual scanning training so I see another post in the future updating you on how it’s all going…
I hope the ninjago posters works~ very clever idea!
Fingers crossed! We have printed some out and are getting the kids to colour them in so we’ll soon see if they help him or not…