looking at life through a platinum blonde fringe.

What will we tell the kids?

on August 5, 2012

I have heard so many parents talk about their children with albinism, and how and what they tell them and when.

I am a parent, I have albinism. I have not had a child with a disability, I am not an expert in child psychology, I bluff and blunder my way through a lot of things. We parents (particularly us mama bears) are very particular about our children and their future, and we all want what’s best for them. I am in no way telling anyone how they should handle “disclosure”, because.. c’mon, you know your child better than me and anyone else, and you know the family life, the education, the lifestyle and the boundaries that will be set. I don’t. So this isn’t a lectionary, it’s more just my thoughts and I’m happy to be corrected.

i hear a lot of parents say “My child will never see the moon or the stars” I struggle with this, I really do. I have to wonder if children are looking for shapes like the five and six pointed figures we show them throughout childhood. Or the shiny silver moon which is usually smiling.  Ask them if they can see little specks of white in the sky. Show them a photo of the night sky with small stars and a moon and then show them the night sky. You just might be surprised. (I know my vision is comparatively better, but I’m sure your child can see these, maybe on a very clear night) Your child may still adamantly claim they can’t see. Use their monocular or a telescope. Let them see the wonder of the non-angular stars.

What to tell them? “My hair is a different colour”  “why can’t I do—” “People tease me”. Oh, in all earnestness – good luck. The teasing isn’t remotely nice. Building resilience in children is a tough job. Knowing that kids will pick on others for any reason is,  in a twisted way understood as an adult, but an 11 year old doesn’t want to know. Knowing that because of the way they look they can be spotted across a playground, park or classroom.  Knowing they can’t see facial expressions and lose some of the social skills others take for granted means they’ll misunderstand and be misunderstood. Knowing they may have a cane, a CCTV, a sloped desk…. anything different to the others makes them a curiosity. Some parents like to speak to the class or have their child speak to the class at the beginning of the school year. Some parents talk to other parents of classmates. Let them know about your child and their limitations or non-limits so they can talk to their own children with more knowledge. Share what works with other parents of kids with albinism.

Your child and sport. A no can do? Maybe. Maybe not. Depending on their vision,of course. The trouble with our depth perception is not having comparisons. So a ball coming from the sky  – it might be six inches away or six feet away. When we have something to compare it to – the size of the head of the person next to us, for example (smile) it is easier. Try, and let them try. Putt putt (mini golf), ordinary golf, ten pin bowling – with or without bumper bars – just try. Prepare for tears, prepare for joy. Go easy and don’t start them off in front of their peers or friends, just quietly let them try without an audience, and without letting them know it’s a “test” to see if they can. Hitting a ball around the back yard, tossing things into a rubbish bin or inflatable pool, catching a ball which gets gradually smaller over time — you know the stuff, sometimes we forget we know.

Reading and writing – oh boy, this is a hotly debated topic! Your child will hold books closer; this is normal. If it still impedes their learning of reading, it may be a reading issue not an albinism issue. Speak to the child’s teacher if it’s a concern. Try some of the tricks for simple dyslexia – coloured see through rulers, or covering the lines either side of the line they’re reading. Anything to help them see what they need to see. Nystagmus shouldn’t affect their ability to read, but watch them closely. If you need to enlarge their work, do so. Tell their teachers to do so. Tell their teachers to use sans serif (no fancy bits on the letters) fonts for their work. In an 18 font. Have the work emailed to the child so they can read it at home or on a computer – enlarged – rather than having a big heavy book of A3 pages. Invest in a CCTV. (The way kids use these for lego, beading, crafting and so on; not just reading… is amazing).

A number of parents have their child taught Braille. Some have fought long and hard battles to enable their child to learn Braille. It can be a sensitive topic, with some people with albinism saying it isn’t necessary, and some parents just wanting the best for their child, not knowing the ultimate answers. My take on it is do what feels right. I’m not being a fence sitter, honestly. If learning Braille is going to help your child write faster, rather than laboriously trying to write notes front the teacher’s talk, (they won’t read the whiteboard)  if it means they can read texts more effectively and efficiently, so be it. And I have had a fellow adult with albinism tell me they wish they’d learnt as a child…. so they could read in bed in the dark after their parents turned the lights off!  Our eyes get tired. After a day of reading and just plain looking, maybe with some glare or other impediments in the day, our eyes just plain get tired. To then have to read something for school or college with those tired eyes can be dreadful. Or maybe it’s just me the avid reader. As a parent you may be vehemently against braille. That is your right and your choice, and your parenting. More power to you whichever way you go. Do what feels right. Your child will need help outside in fast food restaurants, with street signs, with bus route numbers, but they’re going to anyway. Learning Braille isn’t going to lessen or increase their dependency away from their machines.

Having albinism won’t make your child any less academic. In fact,  quite a number of people with albinism are highly intelligent. Having a visual impairment won’t mean they can’t see their letters to learn to read – it’s all they know so they won’t know what you know, and will learn to recognise their letters as they see them. Does that make sense? Just because they can’t see well  – that’s how they see everything. They will learn to adapt, and they should be getting assistance from the school, volunteers or a dedicated assistant.

And canes? Using a cane will help them navigate, it will help them in a crowded space. Instead of continually looking down to miss tree roots and footpath cracks, small stones, uneven ground, the cane feels the area in front of them and they are freed to look around at eye level. A cane is also a great leveller of social awkwardness. (Many is the time in my pre-monocular days I’ve flagged a bus only to tell the driver I didn’t want them once I was able to read their route number or ask. Exit one angry bus driver!) A cane lets people know they might be needing some help, be it bus drivers, fast food workers, people crossing at the lights with them. It means people won’t walk into them as much while they are trying to negotiate their way through a crowd. Maybe it means people will be more respectful – maybe.

Telling family. Again I haven’t had to do this, so I can’t offer advice, but as I was only diagnosed at the age of 40, I have had to tell family and friends about myself, and gauge their responses. (As I’ve mentioned in an earlier post, people thought I was just really blonde) Don’t overburden people with the genetic and physical impacts all on the first go. They just won’t hear it; once they hear the word “albinism” or “albino”, they’ll have their own questions and conflicts. Have some documents ready to give them, but only tell what’s needed at first. If you don’t know… say so. Things like “he’ll have bad vision and have to wear a hat” or “she won’t see very well and we have to use sunblock and cover her up in the midday sun” are enough to start with. Don’t hide information, maybe just don’t give it all at once. You need to adapt, they do too. The internet is great for sending links where others can learn at their own pace and according to their interest. Videos, files, photos, etc are available, but check your sources to make sure they’re genuine.

I had a parent ask me when to decide things aren’t okay. For example, we love to claim that there are doctors, lawyers, engineers, sportspeople with albinism. We claim it because it’s true. Are we maybe overselling this to our kids? Telling them they can be anything they want to be isn’t technically true. They won’t be an undercover agent, they won’t be a fighter pilot, they won’t be a brain surgeon… we cant see the future and we can’t see their individual future. We can’t see what advances technology will make on cars and “bionic eyes”, on computers, on the very idea of workplaces and work itself. So I don’t know of any answers. According to your child’s own academic ability, attitude to study, motivation and resilience, they can be great.

You have been given a child with some vision issues, pale skin and hair. The child has yours and your partner’s genetic makeup. They have you as a parent. Basically, they are just a child. And my favourite child rearing quote is “Give your child roots and wings…”.

Roots – A solid grounding of love and support, of education and trust. Empathy and listening skills. So they are built on a solid foundation to help them through the tough times.

Wings – Independence, confidence, a self separate to you. (Sometimes very hard for parents)

“…Then, let them loose and watch them soar”.


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