Tag Archives: VI

Wobbly Wednesday (or ‘What I Saw Wednesday’)

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By far the most common question I get asked when I mention that my son R has a visual impairment, is “How much can he see?” Although it’s an innocent question which seems simple enough, there is no clear answer for a child (or an adult for that matter) with Nystagmus, the condition my son and I were both born with, which causes an involuntary eye movement. While sight will vary from person to person, the far more interesting fact about Nystagmus is that it also varies depending on situation, stress levels, schema and mood. As part of Wobbly Wednesday, I thought I’d write a little about our own ‘out of the box’ visual experiences with R, many of which were just as much a surprise to us at the time, even with my own experience with Nystagmus, and bringing up a VI child.

So here we go.

Five times my son could see less than expected. (Yes, even with his glasses on!)

1. As a baby, it was nearly impossible to tell whether R could see in any given situation, but once in a while it was extremely evident what he couldnt see. One day at a lunch with friends, one of the guests was speaking, and I noticed R crawling towards the radiator, which I knew was on, and hot. Not wanting to be rude and leave the table, I uncovered an extremely sparkly charm bracelet I was wearing, and dangled my hand down by my chair legs, at his eye level, moving my wrist so that the sunlight and faux gems could attract his attention and move him away from the heater. I was less than a metre away from him.
R, around 14 months old was sitting up, facing in my direction, but however fiercely I moved my arm, he had absolutely no idea anything was happening. Not knowing I was wearing a bracelet, or that I wanted his attention, with no auditory cues, I may as well have been doing nothing at all. I realised how important my verbal cues had been to him up until that point.

2. I am told all the time what a surprise it is to find out that my son has a VI. He runs, jumps and plays like any other 4 year old boy. Thankfully, he has no fear. But once in a while, this can backfire. On holiday last year, he was almost 3, and we were visiting Hershey’s Chocolate Factory in Philadelphia. The room was large, and it sloped downwards on a walkway and then turned to the right. I told R he could run ahead, and warned him that the floor wasn’t flat, an issue of depth perception that we take for granted, but a person with Nystagmus would find it hard to notice. He took a couple of cautious steps, got a feel for the gradient, and ran down the slope to the end. Before we knew it, he was lying flat on the floor, after running into the metal handrail at the end of the room. it being parallel with the wall, he had not noticed that it wasn’t flush with the wall, another issue of depth perception, and had underestimated how much space he had to go before he needed to turn right. This kind of situation, where he feels like his eyes misled him, can be extremely distressing for a child with Nystagmus, and can cause temporary fear. Completely of his own accord, for the rest of the day in this unfamiliar place, he walked alongside us and did not run ahead.

3. We all know the slightly unnerving feeling of coming across someone in a mask or full costume and not knowing who it is, relying on their voice to give them away. A visual impairment makes this so much more complicated. The Jewish holiday of Purim, (think Halloween for a good VI comparison) means that many familiar faces are suddenly covered. While this is obviously difficult, what you may not expect is how much as small a change as a funny hat or glasses, or a design drawn in face paint can confuse someone who is partially sighted. Last year, R joined in with his friends in dressing up, and was unable to recognise people he saw every day and knew well, because of such simple additions to their attire as a sparkly hat. Friends of mine who knew his condition cottoned on quickly, stooping down to his level and announcing their name when they said hello, (a sensible thing to do with R even in a usual situation) but many people rushed past waving at him, or just said hi breezily, forgetting what a struggle it was for him to recognise them now that they had pink hair, or a huge red nose. By the end of the day, he was more exhausted than I’ve ever seen him, and he slept for close to 15 hours that night.

4. It’s okay, he can sit right at the front.  Another reassurance I get a lot from friends and family. But sitting close up does not help in every situation. (Although it is obviously better than sitting far away!) One good example is the first time we took R to a child’s birthday party, once the kids started graduating from tea and cake and onto entertainers. I sat R directly under the nose of the entertainer, and sat next to him so I could point out anything he might miss. For an adult, the misdirection and horseplay is obvious and predictable, but we forget that our children are seeing all of this for the first time. When the entertainer held his wand behind his back while it flip flopped all over the place, complaining bitterly that he couldn’t find his wand ANYWHERE, looking out into the crowd of children laughing and pointing behind him, my R looked at me blankly. All he could do was follow the entertainers eyes and instructions, which were telling him nothing about what he should be focusing on. The children’s raucous laughter only made him feel left out, which to be honest-he was. Quick tricks with lightning fast fingers meant nothing to him, and fiddly characters looking out of windows and hiding back down again, met with cheers and whoops from happy kids, but confusion and stress from my own. After 5 minutes, he started misbehaving, and after 10, I took him out of the room. His speech delayed, I was moved to tears when he turned to me and said clearly, “I just couldn’t see that.” Nowadays, friends may be offended when I show up late to those kind of parties, bringing him for birthday cake and music rather than the sit down and watch portion of events. But it’s not something which can be solved by him sitting at the front, or another common answer, getting him stronger glasses.

5. Another common struggle is when something isn’t where it’s ‘meant’ to be. R, like I’m sure all VI kids, likes to make his visual field easier to navigate. That means that every single thing has a place. If it isn’t where he left it, even if it is 3 inches to the right, it may as well be in Siberia. As a toddler, he would wait for all the other kids to finish playing with a particular activity at nursery, so that he could put it all away and put it back in it’s right place, for fear of not finding it later. He will talk to me sitting on a particular chair, run off to play, and then run right back to the same chair to show me something else, stopping suddenly about half a metre away from it, because it takes him that long to realise I’m not there any more. If someone appears out of context, where he doesn’t expect them to be, he will not name them until they name themselves. If a person is where they ‘should be’ however, where he expects you to be, he might be able to wave at you from across the room, or maybe even respond if you motion him to come here without words. That doesn’t mean he’s being naughty the next time he ‘ignores’ you, it just means you caught him knowing what was expected of him or in a situation which he found visually easier. Maybe it was a familiar place, maybe he already walked past you and took note of where you are or what you were wearing, maybe he simply slept better the night before and it’s helping his sight today.

There is clearly no easy answer to “How much can he see?” but I don’t mind you asking. I know that it’s a complicated response, and I appreciate anyone who tries to understand it. The only comments I don’t know how to respond to are “Oh wow, he saw that Aeroplane!”  or “I’m sure he recognised me from across the playground!”  because yes, sometimes it may seem like I’m making a fuss about nothing, or that his vision is as good as any other kid in specs that you’ve met before. And some days it is. Which is why most of the time I love how no one has to treat him any differently from his peers. And I’m so proud to know that you can be happy for all that he can see and achieve. But if you happen to come across him on a day where he needs that bit of extra help, I’d really appreciate you knowing how to do that too.

Wobbly Wednesday is today! It is a day of fundraising for better understanding, support and research of Nystagmus and it’s sufferers.
To help, you can Text WWNN14 £ and the amount you want to donate to 70070 or visit https://www.justgiving.com/nystagmusnetwork/donate

Disneyland Paris… through his eyes.

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As many of you know, my son has a genetic eye condition known as Nystagmus. Those of you who have met him, will notice his involuntary eye movement, like a pendulum from side to side. You may know from me that he is partially sighted, as it would never be obvious to look at him, he is fiercely capable in almost every situation.

But when we booked to take him, age 3 and a half to EuroDisney in Paris, I can’t pretend I wasn’t nervous. The noise, the crowds, the simple newness of it all can be a recipe for disaster for even a fully sighted child, let alone one who struggles when we move his coat along a peg without sharing the info first. So when the Nystagmus Network, a fabulous charity working to provide support and information for us all, asked me to write a blog on what turned out to be an incredible trip for all of us, how could I refuse?

EuroDisney has an excellent accessibility policy which covers a wide number of disabilities, and the staff are happy to answer any questions you might have about the parks suitability. As a disclaimer, this blog can only comment on visual impairment, and even then only specifically on Nystagmus… And even then, really on my particular little boy. Hello? Any readers left? … Oh hi Husband.

The first thing you need to know before you book, is that you’ll need clear medical evidence of your child’s condition. We used his sight impairment card, and also took a couple of recent hospital reports which detailed Nystagmus and his difficulties with bright lights, crowds, loud noises, and the like. Truthfully they were happy with just the card, and seemed familiar with it too. Go straight to city hall, on the left once you enter the main Disneyland park, and present this evidence, and they will give you a green card, ticked with visual impairment on the back. On the front it will detail how many people the card admits to an attraction. There were three of us, and the card can admit up to six depending on the individual circumstances of the card holder. Note: this counts for all rides and attractions, but not for parades and shows. (See below.)

Once you have the card, you will not have to queue for any ride in either park. Just look for the disabled sign at each ride, (no mean feat for a sight impaired child and his sight impaired mother!) which is usually by the exit, and a staff member will be along to help you. You will need to show your card for each ride, so keep it handy, and try not to lose or destroy it. One extremely capable parent had somehow managed to have hers laminated, a feat which will keep me puzzling for years to come. Does she carry a pocket laminator around with her?

Nystagmus parents will know, that simply the passage of time itself, as well as any new environment is truly exhausting for our wobbly eyed little ones. Standing in queues, waiting in crowds, sometimes for up to an hour, all for a two minute flash of a ride, is either impossible, or not maintainable for longer than a ride at a time. The card meant that we could get on average three times as much done as those without it, meaning that although we would still need to take a long break for him to sleep or rest every two or three hours, it would be after 10 rides rather than 3. There was still waiting, for rides to begin and behind others with a disabled card, but it was usually in an emptier space, often with seating, and never for longer than five minutes at a time.

The other amazing plus was that we could get off and on the same ride sometimes 3 or more times in a row, using the first time round as a ‘getting used to the feelings/sounds’ and then subsequently pointing out what we thought he could see the next time(s) round. The staff were really helpful and lovely about this. Just remember to get off at the end of the ride, and ask the staff where the best place to wait to go on the ride again would be.

One further note on the rides, which we didn’t think of before we left. An unexpected discovery for us was how much our little man enjoyed the roller-coaster kind of rides. Where he was tall enough to go on, these were by far his favourite. Debriefing in the hotel, we think we can understand why. On those rides, it is a purely sensory experience where he can stop working hard to see and just let go and enjoy. Dark tunnels, light outside, fast movement in every direction, no one on the ride knows what’s coming next, and no one can see anything at all, in fact- there is nothing to see! If your LOs are of the brave variety, I would really recommend being courageous yourself and taking them on Thunder Mountain. I rarely see my son that freely enjoying himself, with no hard work on his part whatsoever. Just wait an hour or two after lunch.

A word on the shows and parades. Disney is known for its productions, and there are various shows running all day long. The staff will be as helpful as they can be, but the disabled areas are not close to the stage in all the theatres we tried, (being more set up for wheelchair access etc) and parents do not stop to look at your disability card before elbowing you out of the way with an Elsa wand so that they have the best view for their hyped up candy floss filled youngsters. Once people are seated, they will not move anyone to make space for a visually impaired child.

You may decide that all the shows are just therefore entirely unsuitable, and you will still have plenty to do at the parks. but where you can, present your green card, and bat your eyelashes, and ask at the door whether you can reserve a seat for a later showing,. This also has the benefit of being able to ask for something specific. (For example our son sees far better on the left than right.) Make sure they write the request down, as staff changes often on the admissions desks.

In terms of parades, it’s a little more complicated. The disabled areas give the best views, ensuring no one will be standing directly in your line of vision, but at the end of the day, it’s a parade! It’s fast moving, lots of colour, lots of music and no way to prepare for each new float ahead of time. The characters were brilliant, coming right up to the barriers to shake hands and wave at the kids in the disabled area, which made the parade worthwhile for us, even though I don’t think our LO got a great deal more than that out of it. Coupled with the fact that the card only admits one carer at a time with the child, meaning we had to separate, after that one try on the first day, we skipped the parades and used the time to get food and drinks where the queues were shortest. The night time Disney Dreams show in particular is late at night, full of loud noises, fast changing pictures, confusing colours and large crowds. Just to make things even easier, you can not stand anywhere remotely close due to the fireworks. Our son immediately asked us to “turn it off” and spent the remainder of the show in a frightened cuddle.

The Disney hotels, Cafe Mickey, and various ‘character meets’ around the parks meant that I personally didn’t feel like he was missing out by not seeing the parades, but it’s definitely something to bear in mind when planning your trip, especially with fully sighted siblings in tow.

I was incredibly impressed with both Disneyland Paris itself, and the accessibility policies they had in place. A number of decades ago, children like my son would not have been able to walk through the park gates without a meltdown of epic proportions. We would have managed maybe two rides a day, and certainly no shows or parades. The whole experience would have been miserable. We are extremely lucky to live in a time where disabilities of all kinds are recognised and worked around. and EuroDisney are certainly to be commended for their work to provide equal opportunities for all visitors.

As with any experience in life, there were elements of our stay which were out of our son’s reach, but these largely went unnoticed. Thanks to a little organisation on our part, and incredible effort and thought from the magic of Disney, the wobble in his eyes was far outweighed by the wonder.