6:12 PM

Teachers Guide to Albinisim

**** I did not write this, but unfortunately I have lost the orriginal source, I would be happy to credit the author if they contact me***

Maybe you’re reading this because you have a child with low vision in your classroom, maybe you’re expecting a low vision child in a few years, maybe it’s not something you’ve ever experienced.
There are plenty of other resources for you regarding IEPs, Braille instruction etc. and I don’t know anywhere near enough about those areas to write. I am more interested in writing about the every day, the day to day experience of having a student with albinism (SWA) in your class.
The condition of albinism isn’t like any other low vision condition, so your student can’t just be treated as a generic LVS. (not that any child should!). Albinism is kind of unique, even to the point where if you had five people with albinism together in a room, you and they would be surprised at the variations in their abilities and non-abilities. Each would probably have different visual acuity (the reading given by optometrists), some would wear glasses, some not. Some would use a cane, have a guide dog, or see unaided. Some need sunglasses inside, some can walk outside without sunglasses and a hat. All need sunblock, and all need some exemptions or accommodations.
Most IEP providers have very little understanding of albinism, unfortunately, which can complicate issues. That’s not their fault. Most opthalmologists and optometrists can go their whole career and not have a patient with albinism, because only 1/17 000 people are affected.  So how are you, without ophthalmic experience supposed to know what to do? You aren’t, so relax.
The parents will hopefully have good advice and care from a vision point of view, use their knowledge; please don’t underestimate them, and please don’t assume your local education office knows more than they do. Researchers are finding out new things about albinism all the time; the parents are most likely to be researching just as diligently, and there are so many conditions your local education office are expected to know about….. So, about parents? Trust them.
The SWA is usually fiercely independent, stubborn and intelligent. You will likely have some fireworks from time to time, maybe over misunderstandings on either side, and I’m hoping to help diffuse some or give you some forewarning. The main thing I strongly recommend is to encourage their independence. Don’t pander to them. Unless there are intellectual or other issues, a child with albinism can participate in class activities as much as other children, and should be simply expected to do so, within some boundaries. As an adult with albinism, I can tell you their skulls are as tough, their muscles as firm and their wits as quick as any other student, and making too many allowances for them doesn’t  create the independent, spirited adult they can become.
They need sun protection. The skin of a child with albinism is very fair. White, yes, but with a tinge of pink or yellow. Because albinism presents as a lack of pigment, the skin of a child with the condition won’t tan, it will burn. Getting burnt a couple of times doesn’t ‘toughen them up’ nor does it make the skin respond differently over time. They will just keep getting burnt, and the angry red of their skin will bring with it pain and discomfort, sometimes severe.
Sunblock before leaving home will protect most people without albinism for a day, but in the case of your SWA , it should be reapplied regularly. For short outside breaks, you wouldn’t generally need to cover the hands and feet in sunblock, but be guided by the parents, as they have set protocols for their child and family. Definitely for longer outside breaks or field trips, constant reapplication needs to happen. It is common on a hot summer day between 10am – 3pm, to reapply sunblock every 15 minutes. This isn’t an affectation or helicopter parenting. This is what their skin needs for protection. Melanin changes normal skin colour when sun touched, your SWA has no melanin.
The sun doesn’t only hurt their skin though. The eyes of your SWA are greatly affected by and sensitive to light. You might find you have to put your hand over your eyes sometimes when the sun is bright. Or you may have experienced driving into sun rise or set, when the sun can cause near blindness? In a child with albinism it can be like this under a fluoro light, let alone sunshine. The iris of a SWA is often blue – violet colored (not red!) but the inside of the eye is also pale! so the effect of bright light is often similar to putting a bright torch right by your own eye; it can cause total ‘washout’ or ‘whiteout’ making just the act of seeing difficult.
Because the interior of the eye is pale, sunlight or light isn’t absorbed into the retina etc like in a normal eye, it can ‘bounce off’ the white color. This can cause physical eye pain in some, and result in a headache in many.
Inside, often a cap is best, as this eliminates the light just over the eyes from overhead lighting, whereas outside, a brimmed hat offers this plus sun protection for the ears and neck. The best outside protection is a hat and wraparound polarizing sunglasses. Even normal sunglasses frames have small gaps where light can get through, but it depends on the effect sunshine has on the individual SWA. As mentioned, this varies from person to person, with some people needing complete eye glare coverage from infancy, others not affected until adulthood and beyond.
If its a school sports day, the SWA should still attend but be aware they will need shade, at least access to shade, and while they will hate you for reminding them about their sunblock, they need to reapply it. As if their brimmed hat and sunglasses doesn’t set them apart enough, the continually using sunblock adds to their equation, so they could be embarrassed angry and frustrated. Remember, it’s not aimed at you, it’s at their lot in life, and we all struggle with what complicates our progression and acceptance amongst peers
So you can see these children’s condition makes it imperative they have hats, sunblock and sunglasses.
If your school’s rules don’t support hats and sunblock for students, I suggest they soon will. Work with the parents so they don’t see this as a battle in having their child’s needs met. It’s not only their child being protected, it’s every fair skinned child and teacher in the system.
In Australia, most kindergartens and primary schools have a “no hat no play” policy, meaning if your child attends without a hat, they aren’t allowed out of sun protected areas. Most students are itching to be out with their friends, so generally only do this once or twice. A SWA may actually choose to stay indoors, under a verandah, a tree or similar. Just as many will want to be out in the sun playing, and classes will be outside for PE, trips and so on, so if the school recognizes the importance of sun safety, it can be to everyone’s benefit.
The Australian sun smart motto is ‘slip slop slap and wrap’ which means SLIP on a shirt, SLOP on sunscreen, SLAP on a hat, and WRAP on your sunglasses. It just so happens to be incredibly relevant for people – adults and children – with albinism.
There’s a child in your class with really blonde hair, right? And probably pale skin and blue eyes?  Okay maybe there are a couple of them. But there’s one in particular who squints, pulls things close to their face to see and maybe pushes other people out of the way to look at things?
Having a student with albinism isn’t really that hard. They are independent (sometimes incredibly so) spirited, proud, clever and capable. Unless a child has albinism plus other issues, they don’t need extra help with bathroom breaks, they don’t need extra space in the classroom and they won’t affect your ability to go on field trips etc.
So a lot of the information you may have heard about albinism or albinos may be incorrect.
There are a lot of misunderstandings and myths surrounding albinism. A lot of misinformation and a lot of guesses form some “theories”, and even ophthalmic professionals will admit they don’t know enough.
I’m hoping to show you how the student with albinism (SWA) / Person with albinism (PWA) in your care can help you blow more of these myths out of the water as you watch them grow.  This isn’t to scare you or complicate your school year. By helping your understanding of the nature of the condition, I hope to demystify it.
Looking at the student, you can see their fair skin and hair. However, perhaps surprisingly, the skin colouring isn’t the most reliable or the only way to diagnose albinism, as the vision in a person with the condition is actually also a heavily affected element.
Most people with albinism are found to have a visual acuity (the measurement to determine the ability to see detail) of at best 6/60.  This means what “normally” sighted people can see clearly at 60 metres, a person with albinism sees from only 6 metres. (6/60 – This is the visual acuity classified as “legally blind”)
And remember this is an at best reading, and doesn’t account for health, tiredness, glare or other issues. Some people with albinism have better vision than this, but it is still far from perfect. (The US equivalent is 20/60 – 20/400 with some individuals showing 20/25. The difference in the numbering is simply metric/imperial. 6 = metres, 20 = feet).
Normally with low vision and these numbers, an optometrist or ophthalmologist would prescribe corrective glasses. Sometimes with PWA they will too, but the glasses are unable to completely help with vision. Melanin, while being important in production of pigment, is also needed in the visual pathways which are forming in utero. As the fetus is unable to create melanin, the visual pathways are underdeveloped from the beginning, meaning the vision cannot be corrected. Glasses might help with clarity of some parts of “seeing” but not others.
It’s very hard to explain; a simple way of understanding this is comparing the vision to pixels (the little squares of colour) in a photo. Imagine a photo of a bus. In a photo with large pixels, nothing is clear. If you improve the pixilation, but not to full quality, the image is clearer – you can make out what it is, but not the detail. You can determine the shape of a bus, but you can’t see the lettering on the sides or the edges of windows or wheels. That’s what it’s like for the PWA, even with glasses. A PWA may see a bushy tree, but needs to get closer to differentiate clumps of leaves, even closer to see a patch of leaves and within a few centimetres to see the veins of a leaf. Spotting a bird or bird’s nest in the tree is close on impossible. Remember 6/60 – The leaf you can see clearly at 60 centimetres, our PWA  needs to be within 6 cms (or closer).
There is also a compromise in depth perception. PWA learn ways to compensate, often subconsciously.
By looking at a set of stairs, the shadows indicate a difference in height level. Without any indicator like shadows, or perhaps yellow lines or darker edges, the PWA can see the whole area as flat and may trip up, over or down stairs, which is embarrassing as well as dangerous.
Carpet edges can pose the same dilemma. Unless indicated, is the vinyl strip between two areas of carpet a step? Slightly raised, sunken or flat? You may see a PWA touch these areas with a toe or finger to feel their way. A shoelace, a block or similar on the floor can be a tripping hazard, especially if it’s the same or a similar colour to the floor.
A hint: Try looking through the clear part of a window faced envelope at your surrounds. It’s not a perfect simulation but it’s close.
So what can you expect?
The student may have a cane. This helps them negotiate their way around. The cane can give confidence in the determination of a step, a branch, pebble or person in the path ahead. Using a cane takes practice, and your SWA is using a huge array of their other senses in using a cane.
The student may have a monocular. This is almost ‘de rigueur’ for a PWA. To see the board, to see across a playground, to see a sign.. to see almost anything. Some days it will seem permanently attached to the student’s eye! Other visual aids they may use include  domes, rulers or an array of shaped magnifiers.
The student may use a CCTV, tablet or computer. Their parents aren’t rich, nor are they spoiling their child. The child is legally blind, and the parents are trying to make access to text, resources and craft activities more reachable. PWA get quite adept at using a these tools, they may surprise you.
The student may insist on sunglasses or a hat inside.  The light, be it artificial or from a window, will affect the student’s vision. The inner part of the eye is normally dark coloured and absorbs light. In PWA it is without pigment, so light coming in through the pupil and iris can affect their ability to see as it is reflected back off surfaces. It can in fact cause physical pain.
They may get headaches. Sometimes just the physical act of looking can hurt. If there is glare, or a lot of reading, if it’s a hot day, or the student is unwell, all can add to the stress of just seeing.
They may tilt their head or their work. Along with the low vision, PWA have ‘nystagmus’, an involuntary movement of the eyes. Without their even knowing it, their brain finds a position to hold the head to make it easier to see. This is called a ‘null point’ and means the brain has selected this position to nullify the effect of the movements.
They won’t look at you. They try to, but yet another complication is strabismus, sometimes known as ‘lazy eye’. PWA don’t have Binocular vision like the rest of the population, they have Monocular vision, so while their mono – solo – eye is working, the other is taking a break and may look totally crooked or wobbly. This isn’t controllable; the student can’t start or stop it and they’re unaware of it. So their gaze may not be directly at you, either, even though they are talking to you.
They may not respond to you, or respond inappropriately. If this is behavioural, it’s the child. However, before determining the nature of the response, it’s important to know a PWA won’t know you’re looking at them unless you say so. They can’t determine the detail of your face from where they are seated. They see your face but not where your eyes are looking, and not if you wink, smile, frown or slightly shrug a shoulder. They are unlikely to see a finger point from a distance.
How can you help?
Allow eye breaks. Eye strain is all too common, not just in PWA. Have the whole class stop every now and then and focus on the other form of viewing. ie if they’ve been working closely, have them look in the distance. If looking in the distance, have them look closer.
Allow an initiation visit. Before the first day of school, invite the child into the classroom. Let them see where your desk, their desk, the doors, the bag rack… everything… is. The child will be more confident knowing they won’t trip, walk into something or misname something in front of the class and feel embarrassment. (eg the misnaming; they may identify a picture of a ball on the classroom wall which is actually a picture of an apple. They are unable to make that distinction from their seat).
Educate the class. Have the parents come in, or have the child tell the class about how they see and albinism. Other kids can be bullies, and a child with low vision – who can’t see the prank about to be pulled, who can’t see if the other person is smiling or angry, who can be the target of a tripping hazard – is at risk. Educating the class about their vision, and that the student may need help can open discussion and have the student accepted more readily rather than the ever present “why have you got white hair?” question from each person in the class which can make the student more reclusive. Make sure other staff, including relief teachers are aware of the issues as well.
Magnify class work. Photocopy work, or print it in a larger font. At least an 18 sans serif is best. If the child has a CCTV or a computer with magnification software, utilise this. Email any work that you can, or provide it on a USB, then the student can view it at a size they find comfortable.
Expect and only accept excellence. Don’t allow the visual impairment to rule their life. They are intelligent and need to produce work at the regular standard. Obviously within reasonable boundaries, and the absence of other issues, they are as able to complete work as their peers. They may just need extra reading time in some cases. Push their own expectations without over-reaching them.
Accept their individuality. Often a PWA hones other senses to compensate for the vision. Their hearing or sense of smell may be more heightened, and they may not have the vocabulary or the knowledge to convey this, and they can appear socially awkward. (ie some children talking about the colour of an orange blossom, and the low vision child says “I smell oranges”. They appear to not follow the conversation, but as they can’t identify the blossom, they use another sense.) They will learn different ways to adapt, some will appear odd. Discuss it with their parents if you’re concerned. However, try not to see albinism as the reason behind everything. Some behaviour is just recalcitrant or the student pushing boundaries.
Verbalise. saying “it’s over there” and/or pointing means virtually nothing. The child doesn’t know and can’t see where you’re pointing. “It’s beside the red stapler on the corner of my desk” or “In the corner by the toybox” helps the student far more. Letting them know what’s happening keeps them informed. As in “Jeff has brought his turtle in for his talk this morning, would you like a closer look?” Also getting other children to reframe can help, so Jane could learn to say “We need you here at our table” rather than gesturing with her hands.
Listen to and trust their parents. What may appear to you to be helicopter parenting is the family adapting to a low vision child in their family. They know what they have been told by specialists and albinism support organisations, and how that fits into their own family. The way each family responds is different, just as each family is.
Research albinism yourself, find other teachers who have had a PWA in their classroom and network. Trust your own ability, yet never be afraid to ask. If you’re curious, other people have been too, and the parents will know or find an answer. And they’d rather you asked than assume something wrong.
Enjoy your student within the whole scope of the class. Remember their albinism doesn’t define them. They are an individual with every personality nuance possible. They can and will fall down, trip over, and make mistakes. That’s how they learn; it’s how we all do. Albinism doesn’t set them apart; it just makes them as different and unique as the other students in the class.
One last tip remember its correct to say a child with albinism not an albino.  Just as you would say a friend with cancer not a cancerous friend.  Its her medical diagnosis not her definition :)