looking at life through a platinum blonde fringe.

To todays teachers part 1

on August 18, 2012

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.


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