In Celebration of the Speed Wobble

I saw a very apt post on Facebook recently - the words on the picture read "I thought I would have to teach my child about the world; it seems I'm going to have to teach the world about my child". This describes the last 9½ years of our lives. Some of those years have been tough, some have been really happy, all of them have given us new lessons, and new opportunities to bring awareness to others of my little one's condition.

Before 2004, I had never heard the word "nystagmus". My third pregnancy - my "miracle baby' - was progressing very, very normally. I was eating healthily, definitely getting plenty of sleep, and preparing for this new little bundle.

In March 2004, this new little bundle - Anthony - made his way noisily and hurriedly into the world. Typical Anthony - he can't wait for anything; he was 2½ weeks early! He looked absolutely healthy, and met all his milestones. He even settled into his new creche at three months old like a trooper. But when Anthony's creche teacher said that she really felt Anthony should see an optometrist as he was behind on his milestones for sight, we were given a diagnosis that would set a course in motion that is nowhere near reaching a conclusion, but is an ongoing, exciting journey.

Tiny Tony beside the engine of a Boeing 747 at Rand Airport

We had noticed that Anthony's eyes "tracked" rapidly from side to side, especially late at night when he was fighting sleep. The optometrist diagnosed this as "nystagmus". I asked what would have caused this, and she said "Oh, it could be a number of things - muscles in his eyes that didn't develop properly or that died around birth...." I spent the next eight years trying to remember every single thing I'd done, meal I'd eaten, drink I'd drank in order to work out what I had or hadn't done that I shouldn't have or should have. I needed to be able to warn people not to make the same mistake. To no avail - it was like looking for a needle, not in a haystack, but in a complete warehouse of hay.

Despite his eye movements, he grew perfectly, and was doing so well in every other way. The signs of his ADHD were already appearing, but he was such a little character - our very own Duracell bunny - that we didn't think anything of it. Yes, he was busy, but we didn't see it as a problem. It just would have been nice if he'd slept before 11 when he was little!

At age 5, Anthony got his first pair of glasses. The opthalmologist at the time told us how bad his eyes were, and also recommended that he see a specialist to give him exercises for his eyes. We went to her for a while but it didn't seem to make any difference.

Tony and his sister Cath on his first day of school

Anthony started school just before his 7th birthday. From day one, he was sold - this was the best thing that had happened in his life, as far as he was concerned. Seriously, of my three children, he's the only one that frets during the holidays because he is missing maths lessons! He had an amazing teacher in grade 1, and as the daughter-in-law of an ophthalmologist, she recognised that there was a major problem. She asked me to go back to Anthony's ophthalmologist and get him retested. I did, and got much of the same story. He went back to the eye specialist, and she delivered the blow that Tony's eyesight problems in the classroom were definitely because of the nystagmus, that there was nothing she could do, or that any specialist or surgeon could do, and then she added "Try to keep him in mainstream schools for as long as you can, but if I were you, I'd start exploring other options". I went home dejected, dispirited and despondent.

The one thing our family does have is wonderful people around us who support us, and one such person was waiting at home - my daughter's best friend. We were chatting about the prognosis, and she said "Mom, Tony's going to be fine at Summies (Somerset West Primary). You know they will go out of their way to accommodate Anthony. After Grade 7 - well, we can take that when we get to it. Who knows what technology will be available? But even if you work very closely with the teachers, and enlarge the sections of the textbooks they will be dealing with on that day, he'll be fine, and he'll get through it." So wise for her 19 years! It was just the pragmatic talking-to I needed to spur me back into moving forward.

Anthony's teacher continued to be full of patience with him, and was always looking for things she could do to make his life easier. She had him sitting right at the front of the class and she helped him with giving him paper to copy from, rather than him having to read the blackboard. She also arranged a field trip to the Pioneer School for the Blind and Visually Impaired in Worcester (Western Cape), where she hoped to pick up classroom tips to help him. He was seen by a nursing sister and a social worker. On giving him a brief eye test, the nursing sister's first comment to us was "please get a second opinion on this child's distance vision". We got some great advice that day and found some excellent things to do to help in the classroom.

It took us a year to get that second opinion, but get it we did, and this ophthalmologist, who is a specialist in paediatric ophthalmology, literally took one look at Anthony and said "have you tested this child for Ocular Albinism?" Well, as we'd never heard of it, clearly we hadn't, so he organised the test - a few drops in the eye so that it could be looked at through a special camera - to confirm his diagnosis. He first did all the distance vision tests, and normal eyesight tests. We then had a "coffee break" to allow the drops to work their magic, and also for us to Google "ocular albinism".

40 minutes later, and a couple of photographs, the confirmation was there - Anthony does indeed have ocular albinism. Basically, his eyes do not have melanin in them, so they can't filter light like normal eyes. One of the symptoms of ocular albinism is nystagmus. The doctor confirmed that Anthony has only 50% vision, and the chances of him ever driving a car are absolutely minimal. He gave us some practical advice for the classroom, and for outdoors (lots of sunscreen, cricket hat as opposed to baseball cap, the darker the pencil the better) and prescribed Anthony some new spectacles which not only saw to his distance vision but were photochromic (went dark in sunlight) to help with his light filtration issues. He also left us with a bittersweet thought: "Yes, his eyes are bad, and they're not going to get better, but I can assure you they also won't get any worse."

But here was the big thing for me - for eight years I'd beaten myself up trying to work out what went wrong during pregnancy or birth, and yet this doctor's diagnosis had proved that Anthony's condition wasn't an "event" - it was all part of his genetic make-up, decreed in those very first cells of life, just as much as his blue eyes and his strawberry blond hair. From the moment of conception, nothing I could have done or shouldn't have done would have made a difference to Anthony's sight. I cannot describe how much of a release that was for me.

In this story, the biggest challenges Anthony faces are due to his nystagmus and his battle to visually focus on items (his inability to mentally focus is due to ADHD, but that's another story). Despite that, and all his vision issues, he continues to get great marks in English and Maths. We continue to learn along with his teachers how best to teach him in the classroom, and we've implemented a lot. I've been to visit various organisations and been given advice by them as to how we can help Anthony in simple, everyday ways. More than all of that, though, we've been able to educate people and explain why he battles to identify people, places, figures, objects, and more importantly, words on any screen. I've had to explain why photocopies are often a bad option for him, why he can't share a book, why he should use 2B pencils instead of HB. And I'm sure as time goes on, there will be new things teachers will let me know have worked in the classroom, and there will be new methods I will be able to show teachers. Who says you can't teach old dogs new tricks???

"What Can I See" - a short clip as to what people with albinism, ocular albinism and nystagmus see every day

After discovering Anthony had ocular albinism, I sought to find a support group for either this or nystagmus in South Africa. I had hundreds of questions. The more I sought, the more I saw that there did not seem to be such an organisation. By the end of the year and much searching, a number of people said to me personally, or via social media "Maybe you need to be the one to start it". There isn't an awareness of nystagmus in South Africa, or indeed most of the world.

Which brings me (finally!) to the point of this blog post. This year, for the first time ever, today (6th November) marks the international nystagmus awareness day which for 2013 is being known as "Wobbly Wednesday". Nystgamus Network in the UK have taken this very seriously, and many "Nystagmus Mums" (or dads), and those who battle daily with nystagmus, are speaking on local radio stations, talking in schools and hospitals, or giving interviews to newspapers about living with nystagmus and the challenges that they face every day. As a condition suffered by 1 in every thousand, in South Africa, we can expect statistically that 51 700 people would have nystagmus.

There is no treatment for nystagmus, no operation, no magic pill. It may stabilise as children get older, contact lenses may help, but it will never go away. But it's far from a life sentence, or a hindrance. Don't believe me? Ask Sir James Galway. Or Kenny Rogers. Or Pruitt Taylor Vince. Or Apl.de.Ap - they all have nystagmus. Or ask Anthony, who will simply tell you "my eyes wobble!" before running off to start a game of Marvel Superheroes or Star Wars with his friends.

If you have nystagmus, or have a family member with nystagmus, or if you are an educational or medical professional dealing with the eye condition, please go to and "like" the Nystagmus Support SA Facebook page. And please spread the word! Nystagmus isn't a life sentence - it's an adjustment to everyday life.

A Speed Wobble By Any Other Name ....

If you've read my blog post from last November you'll know about my little Ginga Ninja, Tony, and the challenge of his Nystagmus and his ADHD.  Treatment is going ahead for the ADHD, and while I'd like to say that he's a very cool, calm, collected young boy now, he wouldn't be Tony if he was. As he pointed out a few weeks ago, "I'm not a 'calm-down' kind of guy!"


However, we decided, after our visit to the Pioneer School for the Blind in Worcester last year, that we wanted a second opinion on Anthony's eyes.  We finally got to take him to Dr Galloway in Wynberg (Cape Town) on Monday, and he tested for - and confirmed - that Anthony has something called Ocular Albinism.


This may be the first time - like it was for us - that you have ever heard of this condition, and you may be wondering what it actually is.  Here is the definition from the National Organisation for Albinism and Hypopigmentation (NOAH) :

Ocular albinism in an inherited condition in which the eyes lack melanin pigment, while the skin and hair show normal or near-normal coloration.

The lack of pigment in the eyes causes various vision problems:

• Reduced visual acuity from 20/60 to 20/400 and sometimes as good as 20/25 in African-Americans, 
• Nystagmus - involuntary back-and-forth movement of the eyes, 
• Strabismus - crossed eyes or "lazy" eye, and 
• Sensitivity to bright light and glare. 

The reduced visual acuity may result in difficulty in school, such as inability to read what is written on a chalkboard except when very close, and difficulty with ball sports. It may also result in inability to drive.

With ocular albinism, the color of the iris of the eye may vary from blue to green or even brown, and sometimes darkens with age. However, when an eye doctor examines the eye by shining a light from the side of the eye, the light shines back through the iris since very little pigment is present. There may be areas of the iris which have very little pigment.

The main problem with the eye in ocular albinism is in the fovea, small area of the retina which affords acute vision. With ocular albinism, the fovea does not develop completely, presumably because melanin pigment is needed for the growth processes that normally occur before birth. Therefore the eye cannot process sharp light images. Because the fovea does not develop well, it is difficult to correct vision completely with glasses.

Another defect in ocular albinism is that nerves from the back of the eye to the brain do not follow the usually pattern of routing. From the normal eye, nerve fibers go to both sides of the brain, that is, the same side as the eye and the side opposite from the eye. From the eye with ocular albinism, more of the nerve fibers cross from the eye to the opposite side of the brain.

Basically, after giving Tony what everyone would recognise as an eye test (chart with numbers/letters), he put drops in Tony's eyes and sent us off for half an hour (good chance to get coffee and Google Oculur Albinism!).  When we came back, he took photos of Anthony's eyes with a specialised camera, and the photo looked something like this:

"Those main blood vessels you see there are the main veins and arteries carrying blood to and from the heart.  Do you see those other, fainter blood vessels?"

"Yes"

"Well - that's the problem - you're not supposed to!"  He then proceeded to show us a photo of a normal eye, which looks something like this:

Remarkable difference, isn't it?  That coating is the pigmentation melanin, and it's what filters the light coming into your eyes. Without it, there's no light filtration.  

Let me clarify that Anthony is NOT albino - that's another condition altogether.  Someone who has albinism has no pigmentation in their skin, hair, eyes at all - Anthony has very strong pigmentation in his hair - that beautiful strawberry blonde colour is what some women pay thousands for every year!  He has the bluest of eyes, and though his skin is very fair, it's only slightly paler than usual.

However, as stated above, this condition does lead to vision problems, and Anthony will always have glasses or contact lenses. His sight will not improve.  In measuring his vision, Dr Galloway believes Tony's sight to be in the region of 50%. But the good news is, it won't get worse either. The doctor's advice was to keep him in mainstream school as long as he flourishes, but to bear in mind that it will get more difficult in the higher grades.  I decided to ask a question that has been on my mind for a while, and asked if he would ever be able to drive.  The doctor's reply was that he'd rather prepare us for the worst now, so that anything else is an unexpected surprise, but he believed with Anthony's level of vision, he would not ever be able to learn to drive.

So that's where we are. Does this affect Anthony?  Not at all - he's the same happy-go-lucky child he always was.  He'll quite happily go up to a complete stranger and announce proudly "I have a nystagmus! My eye wobbles!"  Or to another (with a huge smile on his face) "I have ADHD - and so does my best friend!" That's just who he is - ain't nothing gonna break-a his stride, nobody's gonna slow him down - oh no! He's got to keep on moving!  

With the amazing school he goes to and its teaching staff, nothing will change there either. He is already sitting right at the front of the class, with an angled add-on to his desk, so that he's not looking directly down and working in his own light. He works with 2B pencils, not HB, and luckily the print in his readers is big enough for him to see.  He gets high marks for English, Maths and Science. He has an analytic and logical mind, so he loves the problem-solving queries he has to deal with. He soaks in information like a sponge.  In short, he is more than flourishing, he's excelling.

Here's the thing.  When, years ago, I was told that Anthony's nystagmus was the result of muscles not having developed properly, I got to thinking "What did I do wrong? What didn't I do?".  However, on reading up on Ocular Albinism, it comes from the X-chromosome, so at conception there was a 50-50 chance that Anthony would get it. And he did, while his brother Andrew didn't (it generally affects boys more than girls). So here's the way I'm looking at it.  God decreed from the moment that those cells split that Anthony would have Ocular Albinism.. Why? Because He has a massive plan for his life.  "For I know the plans I have for you, says the Lord, plans to prosper you, not to harm you; plans to give you hope and a future" (Jeremiah 29:11).  At this stage I don't know what Anthony's future looks like. What I do know is that it is bright.  He's a super-bright child, a total science geek already, nerd deluxe - he'll take anyone on in a quiz on Doctor Who, Star Wars or Harry Potter.  His Grade 1 teacher already said he will grow up to be a writer - either of fantasy novels or of computer programs. I could honestly believe that.  

Did God make a mistake when Anthony was conceived?  Was this just a freaky accident of nature?  Not at all.  I believe God was very intentional in this.  In thinking about it all on Monday, the only verse that was coming into my mind was "I am fearfully and wonderfully made" (Psalm 139:14) All those intricate things that go into making Anthony who he is INCLUDED the "speed wobble" that he has, and his superdrive.  He is the first to "walk across the room" and introduce himself to new people. He is not in the least bashful, and has no qualms about his conditions.

There are many challenges ahead for Anthony, and many questions that have arisen, but this I do know - this  condition does not mean the end for Anthony.  It is a new beginning, and one from which he will spring to entirely new levels of achievement.

Finally, if anyone does know of any support groups here in Cape Town for Ocular Albinism, and if anyone has answers for me on the legal applications (like can/should I register him as officially visually impaired, what is available to help him - physically, emotionally and financially?) then please, please get in touch with me.  

Please stay tuned - I have a feeling there are going to be many chapters in this story!

Going the extra mile (or 50m)

Today the school secretary from my son's school, Somerset West Primary, sent me a beautiful photo of my ginga ninja taken last week at their Inter-house sports. Last week it seems I only heard a tiny part of the story. Anthony very proudly came home and said "Mommy, I ran as hard as I could and I came fifth out of eleven!"  When Karin sent me this picture, I saw the other half of the story and I cried.  You should see this picture!

Picture: Karin Van Rooyen

Let me start by explaining that "Summies" (as Somerset West Primary is affectionately called) has three "houses" - Van Der Stel (blue shirts), Lord Charles (yellow shirts) and Beaufort (white shirts).  That's what makes this photo even more poignant and significant.  Anthony, who is running with all his might (you can tell from the determined, focused look on his face) is very much in the Van Der Stel team. But the real story behind this is that the teaching staff, because of Anthony's low vision, organised for an older pupil to be a "running guide" for him.  This boy, very clearly from the Beaufort team, ran the full 50m at Anthony's pace, holding on to him, and gently guiding him to the finishing line.  What a beautiful example of selfless teamwork.

I've heard many "team talks" at school assemblies - my own school, at Summies and at Hottentots-Holland High School, and we all know the clichés - "There's no 'I' in 'team'" and "Team means Together Everyone Achieves More", but Summies live it, and they've proven it over and over again.  This picture just screams "teamwork" - what if Anthony had been a top sprinter and got a whole heap of points for Van Der Stel while being helped by someone from Beaufort?  It didn't matter - this was a fellow Summie who needed his help.  I don't know who this lad is, but by the look on his face, he's totally focussed on one thing - helping Anthony to finish his race and finish well.  Sacrificing your own needs to help the team achieve more.  What a beautiful lesson this is!  It really gives me hope for South Africa's future.

But I really got thinking deeply about this picture.  It's such a picture of how we as Christians - Christ-followers - should be living our lives.  When we turn to God, He never asks us to see the finish line.  He says "this is the way, walk in it" and we run with all our strength - that's what He's asked us to do. We don't have to see where the end is, we just have to run - because running beside us, holding on to us and never letting us go is our Guide - the Holy Spirit - who can see the end, and whose aim it is to see us finish and finish well. It doesn't matter that we are poor, that we come from the wrong side of town, that we came from a terrible background, that we are divorced, that we've messed up big time - as Christ-followers we're all "on the same team" and the Holy Spirit keeps leading us, irrespective of who we are or where we came from .

Together Everyone Achieves More - Anthony certainly did last week.  May it be true of all of us.

Dealing With a Speed Wobble

When Anthony, my youngest child and duracell bunny of note, was born, he looked, to all intents and purposes, 100% perfect.  His hearing test was superb, his reflexes were sharp, he certainly had no problems with his lungs, and all systems seemed to be functioning perfectly normally. Oh sure, he decided from day one that this breastfeeding thing is for the birds, and flat out refused, no matter what I tried (and trust me, I tried everything!) and then there was the issue of sleep, which he decided almost from the get-go was for sissies (I wonder who he gets that from .....).  But he was growing beautifully, passing all his milestones - in general doing just fine.

I returned to work, and I found a nursery school, where he would happily go for the next 6 1/2 years of his life.  But we started to notice something about his eyes.  They tracked from side to side, very quickly, and the more tired he was, the worse it got.  His daymother also noticed it and noticed that he didn't follow objects as well as other babies his age.  He was fine with the big colourful rattles, but smaller things, he didn't seem to follow.  She worried that Anthony was blind.  We made an appointment to see an eye specialist in the town, and she told us that he has a condition known as "nystagmus".  It is a condition in which nerve endings in the muscles of the eyes have died or not developed, resulting in an instability or involuntary movement of the eyes.  She gave us the prognosis that most people with a nystagmus learn their own coping mechanisms and will each "deal with it" in their own way.  She told us there and then that he may not read a book "square on" like his peers, but he'd find a comfortable way to read it.  I put this very comforting information in the back of my head.

What nystagmus looks like

Shortly after, I met a lady with a pronounced nystagmus.  She said that it had not held her back in any way at all.  That was what I needed to hear at that time.

And I really haven't given it too much thought since then.  Anthony completed preschool, and at the beginning of this year, started primary school.  And that's when the fun began ....

His teacher called me in within a week, and said that she had him right at the front, but that he still seemed to be battling to see, and that he would almost lie with his head on his work, and that in some tasks the class did, he needed almost double the time to complete it.  She requested that we revisit the ophthalmic surgeon.  Just before I did, something in my head said "What if it's not the vision? What if this is the nystagmus?"  The opthalmic surgeon said that his eyes are still the same strength they were.  Yes, he's far-sighted - exactly the same condition (and almost the same strength) that I have, but his eyes have not deteriorated at all.  He confirmed exactly what I'd been thinking.  He suggested I see a specialist who works in eye exercises.

So I did that this morning.  She did a couple of quick tests and said four words that would begin to change the way we view everything - "Yup, it's the nystagmus..."  She did a whole load of other tests, glasses on, glasses off, one lens covered, different positions in the room, different card charts, reading close up, reading far away.

And then she dropped the bombshell. "There is no exercise I can give you, there is nothing that can be done, there's no surgery that can correct this.  Your son is visually impaired. My advice would be to keep him in mainstream school for as long as you can, but my worry is that, certainly at high school level, he will battle to read textbooks.  You may need to research into alternative schools, or homeschooling as options".

I watch this little bundle of energy running around.  I watch him try to defeat the White Witch in Narnia on the PC.  I watch him cycling.  I see him on the stage every Sunday morning, giving all the musos a hard time.  I listen to him discussing Star Wars with my teenage son's youth leader.  I giggle inwardly, as I am introduced to yet another parent that he doesn't actually know either, but with whom he's struck up a conversation just before my arrival.  I sense his heart of generosity as he so desperately wants classmates to come around so "I can show them my stuff, and we can play".  And I can't reconcile this.  My child is not handicapped. And yet he is.

But as I said to someone today, I think sometimes God puts extra character, energy and stubbornness in certain people.  God knows the challenges that lie ahead of them.  I think I understand now why Anthony can go on so much less sleep than anyone else, and be fine.  How he can outstubborn even the most stubborn of people.  He will have to work twice as hard for twice as long to be just as good as everyone else.  I don't think there are many other kids that could handle this the way that Anthony will.  There's a level of gritty determination in him that is awe-inspiring. 

And when I see this, I know he's going to be all right.  One day, he's going to meet another lady whose baby has just been diagnosed with the same condition, and he's going to put her mind at ease, by saying, "Don't worry - my mom felt just like you, and look at me - I turned out just fine."

Some tips I found helpful in research:

Information for Parents of School Children with NystagmusThese guidelines should be used discreetly and with acknowledgment that each pupil is an individual whose sight will vary.
1. Encourage the student to explain his/her visual needs; however, continual and undue attention to these should be avoided.
2. Allow books/objects to be held close to the eyes, the head tilted and any other body posture adopted if this enhances vision.
3. Provide the pupil with his own book/worksheet. Sharing is impossible.
4. Enlarging material will often help, although good contrast may suffice.
5. Wall displays for reference should be placed at eye level and where the pupil can stand close to it (not above a filing cabinet or table for example).
6. Ask the pupil where he/she would prefer to sit. It is often facing and near to the board, they should not sit to one side. He/she should be offered positions close to demonstrations during activities.
7. Store visual aids so that the student has easy access and can use them when he/she judges that they will be helpful.
8. Allow the use of prescribed tinted glasses, cap, hat, or eyeshade to reduce the effects of glare.
9. Read aloud when writing on the board; describe diagrams.
10. Allow sufficient time to complete tasks and to examine materials/objects.
11. Good (though not necessarily bright) lighting is essential. The light should be behind the student and directed onto the object being viewed. Matte surfaces for walls, boards, and paper prevent light reflection and glare.
12. Use strong color contrast between letters/figures/lines and background. These should be well spaced.
13. To keep track of where the pupil is up to when reading, a piece of dark card may be used or he/she can track with a finger. Exercise books with matte paper, different colors, and line spacing should be made available.
14. In ball games, it may be difficult for the student to follow a fast moving ball if they have poor vision or strabismus (misaligned eyes). Congenital nystagmus alone might limit effectiveness in the outfield. 

(From the American Nystagmus Network, www.nystagmus.org)