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)