Ocular Albinism, Light-sensitivity & Dancing Eyes

Peter is just starting secondary or high school. He has finished his primary education. Peter is an able young man who happens to have an eye condition which he finds quite disabling. It is a condition which many people do not understand and is not too easy to explain. Children with an eye condition often have features that are unique to them. For this reason to have the students explain for themselves is so helpful since I as the VI teacher can only talk in certain generalities. Peter helpfully explains how he sees and what needs to be done to help him in his schooling to access the subject content to the same level as the other pupils. 

Nystagmus almost always seems to be associated with albinism or ocular albinism. Nystagmus reduces vision, causes fatigue, and often results in an unusual head turn, which is as automatic to the sufferer as blinking. He just automatically finds the best position to see. The time of day affects visual clarity in a way that non-sufferers cannot fully appreciate. Peter is at his best visually in the morning when he is fully rested, but as soon as tiredness kicks in his eyes lose their focus. Stray light coming from the side windows can also affect him in quite substantial ways, in that he appears to be unable to control his eyes and stop them turning to the light. 

There are various ways of adapting to the symptoms of ocular albinism. Wearing a cap or tinted photochromic spectacles are two ways. Young people often do not like to wear glasses because other children can tease them. This is especially so if the glasses are different from the normal glasses. Tinted glass can draw attention and cause embarrassments. So it is no wonder that youngsters like Peter prefer not to wear coloured glass, even if it could make a difference to him. No one likes to be different, however much you explain to them that no two people are the same. We all like to be the same and to feel accepted by the group. That is very natural. Albinism and its ocular variant do tend to emphasise difference and children fight hard to avoid the negative implications of their visual difficulties. 

Nystagmus is not always that obvious. Even close up the eye movements are subtle. But it is one more reminder that the dancing eyes can be more pronounced at some times than others. Albinism sufferers in addition usually have an imbalance in their eyes. Both eyes do not work perfectly together. One eye is weaker than the other. Peter's left eye is most affected and this leaves him with some of the usual difficulties of balance and depth perception. Catching a small ball can be a challenge especially if it is white and not brightly coloured. 

Summary of how to adapt materials for Peter

Interactive Whiteboard

1.     use large letters at least 3-4 inches tall

2.     use a simple font like Arial

3.     avoid BLACK, use colours that give good contrast

4.     turn off the ceiling lights to avoid glare

5.     printed letters are easier to see than handwritten text

6.     always talk down what you have written , i.e. read out at least once what is on the board

7.     IDEALLY HE SHOULD HAVE A COPY OF THE BOARD NOTES

Handouts

1.     use text that is 28 point. 18 point is barely accessible, but anything smaller is not accessible.

2.     In handouts use clear fonts with good spacing

3.     Enlarge diagrams and avoid poor copies / poor quality images. Colour is much more accessible than black and white.

4.     Use yellow paper where possible; ensure the contrast between text and paper is good. Blue text on yellow paper is ideal. Black on yellow is acceptable.

5.     Avoid writing over pictures.

6.     DO NOT USE BLACK TEXT ON WHITE PAPER.

In groups

1.     Keep close to him so he can see your face or gestures.

2.     Use as much description and explanation as possible.

3.     Address him at least once in a session so he is ‘positively discriminated’ and feels included.

Working in the classroom

1.     from time to time check him out to see he is on task.

2.     Try to avoid asking ‘can you see?’.

3.     It is better to enlarge handouts BEFORE THE LESSON.

Exams and tests

Modified question papers (in the UK) come generally in

-       unmodified enlarged (A3 size copy);

-       modified enlarged 18 point (B4 size);

-       modified enlarged arial bold 24 point on A3 paper.

It is advisable to ask for MODIFIED ENLARGED PRINT ARIAL BOLD 28 point. Although boards usually only supply modified enlarged print Arial Bold 24 point it is worth asking if this size can be produced as it does happen.