Tag Archives: nystagmus

Seeing into the Future.

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I’m sorry. 

That first visit to the hospital, when you couldn’t see anything at all, I promised I would do everything it took to get you the help you needed. To give you options which were the same as anyone else’s. 

I insisted on being referred not once but twice until we found you the best doctor, the doctor people got on a plane for, the doctor who knew everything there was to know about our condition, who could suggest treatments and surgeries that even the nystagmus mums groups on Facebook didn’t know about yet, despite their collective knowledge of everything Google has to offer. 

Two years ago, this doctor, this doctor I have the utmost faith in, did what he called ‘a bit of cut and paste’ on you. 

So blase, as he took a scalpel to your eyes. But even as we shuddered, that’s what we wanted-it meant he did this every day. 

But the results didn’t work out exactly as we’d hoped. 

Your head still turned, your eyes wobbled even more as you learned to read books and study things up close. You were growing up, and the surgery hadn’t worked as planned. 

“A repeat surgery is risky”, they said.

“It could cause side effects”, they said. 

“Double vision”, perhaps. 

“Let’s do a test” we agreed, nervously. 
We held your hand as you slipped under anesthesia again, this time so they could put needles into your eyes, temporarily freezing your muscles.

It sounds futuristic! It sounds amazing! What a time we live in!

(It sounds awful. I won’t think about it. Motherhood doesn’t change just because medicine does.) 

When you woke up, it didn’t take long to see that it hadn’t worked as we had hoped it would.

Double vision. Frustration. Exhaustion. I can only share two of those with you. 
“It will wear off”, they say.

“Just two months”, they say. 

But two months to you, is an eternity. Waiting five minutes for the iPad is an eternity. Two seconds while I get you your snack is forever. 

Two months is an age where you learn that life can be hard. And takes energy you shouldn’t have to find. Not at six years old. 
So they’ve patched your eye, and they say we will wait and see. But it’s me who waits, and you who can’t see. And they? They can’t do anything at all.

But I know. I know that this was a test which went badly. No positive effects to speak of. Just a ‘phew, it’s only temporary’. A pat on the back that we didn’t make it worse long term. That it will wear off.

And when it does wear off? 

Your head will still turn. 

Your eyes will continue to wobble. 

Life will still be harder than it could have been. 

And there’s nothing more that these doctors that people get on a plane for can suggest to help you. No more chances to give you the same options as everyone else. 

And so I say, in a bright voice, Rapha, wobbly eyes are our superpower. You and me? We are superheroes. And you? You are my superman. 

And we wobble our eyes and our faces together in the hospital waiting room like maniacs, and you laugh and laugh and I force my face into a smile and am pleased for a moment that your eyes are patched and you can’t see the tears in my own. 

Because I don’t feel like a superhero. I feel like I’ve let you down. 

Wobbly Wednesday 2015

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My eyes never stop moving.

That’s not a clever way of saying I spot everything (quite the opposite actually) or that I’m constantly busy (ditto), it’s just a statement of fact. it sounds like a small thing, eyes which jerk or swing from side to side, the way mine and my R have done since we began to see, but as a member of the Nystagmus Network, named after the condition we both have, I see so many questions daily, so many confused parents and worried adults, people who have to work just as hard as their eyes do to get on with a normal day, that when Wobbly Wednesday (a day to spread awareness for Nystagmus) rolls around, I can’t help but jump on the bandwagon.

Spreading awareness is a funny thing. Especially in a blog form. While my closest friends probably know more about Nystagmus than the average person who has the condition themselves, I can ply them with lattes and croissants, and distract them with questions about themselves interjected into an otherwise self-centred conversation about my life and my child and my fears, y’know, to make them think the conversation is two sided.

I can’t do that anywhere near as effectively on a blog. I probably have only about 3 more minutes of your attention span before you realise the jokes are drying up and click through to something about Kanye West. So I’ll try for a top 3.

Top 3 things I wish you knew about Nystagmus

  1. My glasses don’t mean I can see as well as you, any more than a walking stick turns an arthritic into a cross country athlete. I wear glasses, and so does my son. They support us, help the development of the eyes, and in my case-improve my vision where short-sightedness is involved. But Nystagmus means our vision is poor, with or without our specs. In R’s case, it means he is registered partially sighted. No amount of “lens 1, or 2? better with? or without?” will make a difference to that.
  2. We’re so tired. The simplest way of explaining it is that our brains have to work a lot harder to produce a still image for us to understand what’s going on around us. It’s an extra step in processing information, in seeing what someone is showing us, in reading a book, in playing a game. New settings are particularly difficult. It can be frustrating (especially if you’re five), it’s always exhausting, and often when I’ve been to a new place for the day, my eyes physically hurt by about 4pm.
  3. I just can’t see that. Whatever it is that you’re pointing to on your computer screen, yes even if it’s font 18. The faces of the people on stage, yes even from the front row. That sign out of the car window, yes even if you slow down. The detail in that drawing, yes even if I hold it closer to my face. Your face in the sunlight, yes even when it isn’t hot ouside. Who you are when you drive past me in the street, yes even if you beep and wave.

Next week, my R is having an eye surgery to help with some of the symptoms of his Nystagmus, in particular his head tilt, (adorable though it may be.) We are nervous about the operation as any parents would be, but we are also indebted to the UK Nystagmus Network and the Barnet VI team for being not only a font of knowledge, but also a community of kind listeners and intelligent answers and support. There is no cure for Nystagmus, but people like the ones we’ve come across not only never stop tirelessly looking for answers, but also help us get on with our daily lives so effectively that we have to suffer through people insisting there’s nothing wrong with us in the first place. A great testament to their hard work.

Lastly, I don’t run marathons, I don’t do sponsored mountain climbs, but I do write things down.

If you enjoy my writing, if you’re one of the people who stops me in the street and says “Hey, you haven’t blogged in ages”, please consider texting WWNN15 followed by any amount at all to 70070 to donate to Nystagmus Network.

Wobbly Wednesday

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

Keep Listening

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I recently wrote an article about how difficult and frightening it can be as a parent of a child with a special need, when it comes to approaching your child’s teacher. I discussed the fears and the expectations we all try to balance daily, and the fierce ‘mama bear’ instinct that can be so hard to suppress when we are advocating for our children.

This instinct doesn’t only rear it’s head when we are facing a particularly difficult or frustrating situation, It is there all the time, and probably exists outside of the special needs world as well. It’s an overwhelming urge to do the most you can for your child; a surety that our children give so much just to get through what would be second nature to their peers, that they deserve to have equal opportunities, and sometimes perhaps more than the children around them. Like any parent, we want our kids to have everything. But they sometimes need that bit more help.

Once in a while, we meet a person or a teacher who goes above and beyond. Who waits outside the building to meet you in the morning, because the room looks different today and they know your son doesn’t like change. A friend who brings an extra copy of the story book to rhyme time so that your child doesn’t have to simply sit and listen to words which refer to pictures he can’t see. A teacher who takes the paperwork for his statement home to make sure all the t’s are crossed and i’s are dotted before an important deadline. Who never forgets to crouch down to his level to say good morning, so that he can see their facial expression clearly and know who is speaking to him. Someone in your life who phones you before booking their own child’s birthday party to see if it’s accessible for yours. A visual impairment specialist who somehow knows exactly how to bring your child out of themselves, help them learn confidence and social skills and pride in their own abilities. Who not only encourages your child to be the best they can, but encourages you to give them the freedom they need and simultaneously find confidence in your own parenting.

Those of you who follow my blog will know that my writing is broader than any specific person or place. I am overwhelmed by the response I have received for my special needs article, from parents in countries around the globe, whose children vary from toddlers to teens, all of whom have sadly experienced the emotions I wrote about. I am so glad that my words resonated with all of you, and I truly hope you’ll forgive my foray into the personal just this once, and that the following speaks to you too.

Because once in a while, as the parents of a special needs child, you have experiences that make you forget why it is ever difficult. This week, my 3 year old walked out of nursery with a ‘welcome to big school’ folder, with all the same photos and drawings as his peers. The only difference was that unbeknownst to me, his folder had been made 3 times the size of anyone else’s. My heart burst with joy as he easily showed me who he will be taking with to big school, and explained to me what every page in the folder meant. And the ‘mama bear’ inside me was proudly redundant.

This week, as my son says goodbye to his nursery, I am sad. He entered the building barely two years old, with no language, little confidence, and zero understanding of his own limitations. Among so many other incredible leaps, he can now clearly tell me when he cant see something, is strong enough to ask for help, and yet somehow still has no idea that there is anything in this world which he cannot do. I couldn’t possibly ask for more.

Being the parent of a child with additional needs is often hard, and there is no setting or person in the world who will know your son or daughter and what they need as well as you do. I can only hope I continue to find people in our life who go above and beyond to ensure he is always as happy and secure as I saw him this week.

Start Listening

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I have never felt so helpless in front of another human being.

I have been a child, strapped into a highchair or a car seat, wriggling for freedom to run and play. I have been a teenager, full of angry hormones, shouting and demanding independence and insisting I know best, met with inflexible rigidity. I have been a woman, crippled with labour pains, fighting against my own body for release and comfort. But standing in front of you, I have never felt so acutely another persons hands wrapped casually around my heart.

You are my sons teacher. But I am his mother. To you, that title may not mean much. Yes I gave birth to him, but I do not have any qualifications or certificates to prove my worth. I don’t have years of experience or references from children now grown. I don’t have a shiny laminated badge with my credentials, and I can’t issue you a formal letter with expectations or give you any funding or resources.

But that title. That word. Being a mother to that little boy means I know. I know the obstinate way he mutters under his breath crossly when he’s done something naughty, I know that as soon as we walk in a room he will be counting the lightbulbs, (including which ones are faulty.) I know from how far his head is tilted to the right how much difficulty he is having seeing something, and I know from the subtle head wobble when he is too tired to try. I know when his frustration at being left out or overwhelmed is causing naughty or difficult behaviour, and I know when it’s just a symptom of the dreaded threenage years like any other fully sighted child.

You are his teacher. But I am his advocate. I’m the only one he has. And it’s a ferocious balancing act throughout which I’m scared nearly all the time.

Scared to argue my case, because I know that we’re paired together my son and I. Who knows how I could unintentionally offend you and without any malice on your part, have it taken out on my helpless child? Frightened of not saying enough, and leaving him without the same opportunities that so many other children and parents take for granted. Practising with my husband in the morning before I approach you, trying to find that elusive tone of voice, or expression that will make my words appeal to you. Hoping that you will put aside the issues of resources and check-boxes, and just look at this mother who has no pride, and would crawl over hot coals if it meant that you would believe she isn’t hysterical, she isn’t trying to upset you or make your life harder, she’s just acting on the most basic instinct on the planet, that of a mother protecting her young.

I am one of thousands of mothers whose child needs that bit of extra help. We shouldn’t have to write letters or shout loudest or cry tears to be heard. We shouldn’t have to pick our battles and decide which parts of our children’s school life aren’t as important for them to access if it turns out that we can’t fight for them all. We certainly shouldn’t have to feel scared that we’re going to be ignored or condescended to or fobbed off with excuses when we summon up the strength to stand our ground against the system.

But in a world where these situations are often the sad reality, please acknowledge how it takes immeasurable courage for me to approach you. I am the advocate for my son. I’m the only one he has. For the time being, I am not only his eyes, but also his voice. And I’m asking you to stop simply hearing me, and start listening.

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.