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Albinism


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Having had the first set of our induction meetings for our new intake next year, we have a little boy coming to us with allbinisn. We do already have the support of VTS, but I dont have experienec of this condition. We know that he cant see a great deal, other than shadows, and that he wears sunglasses all the time, and rarely goes outside, but I wondered if any members have direct experience of the sort of issues we are likley to face meeting his needs.

Thanks. I want to make sure that we start the ball rolling for any additional equipment or adaptations we may need.

:o

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Hi mundia

my husband is a paediatrician. I could ask him if you want. It is pretty good having an useful :o husband. I always bounce ideas off him and ask him for medical background information about health conditions. :D

 

Cheers Leo

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Mundia many years ago we had an albino child in the nursery where I worked although I was not her teacher.

She was a cheerful little soul as I remember, joined in everything to the best of her ability and I am not aware that any special provision was made but times change, childrens needs obviously vary greatly and as I was not directly involved perhaps I am forgetting something!?

Sounds as if some individual support may be order though if vision is affected and how will you manage if you want to go outside enmass and he can not go? Rather ruins ratios?!

Has the family had any other support that you can access?

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  • 2 weeks later...

Hi

 

Don't know if it's of any help but we had a delightful little boy who had this condition. His sight was poor but he could certainly see more than the shadows you describe. He was seen regularly by a hospital eye specialist and someone visited the pre-school to advise us.

 

The adaptions we made we all related to natural/artificial light and he had to sit with natural light behind him. He also had a little sort of desk shaped thing that was battery operated and lit up. If very bright paper was put on top he was fine, he also had to use big chunky writing materials in very bright colours. No white paper with pencils or black felts. Luminous yellow was particularly good.

 

I am sure there will be somebody involved with his care who will be able to offer specific advice.

 

Good luck and do let us know how it goes.

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  • 2 weeks later...

Hi! Well done for wanting to get an early start! I have been working with wonderful boy who has albinoism and my advise to you is do not assume or under estimate what he can/can't do!

This little boy achieved so much.

If we used different equipment or changed furniture around we did pre warn him so he was aware and he usually tried out things before anyone else. He managed all climbing equipment,bikes balls, no problem.

We also put in for a grant to get some blinds for the windows because of the sunlight, they don't block the sun completely, just dim it. We always made sure he sat with his back to the sun.

We had to make sure he had sun cream on if he went outside and there was a small problem of him hitting out at others if they came too close to him (children move fast and all though he could see more than shadows i think it scared him a little). he felt more comfortable in smaller groups so we tried to do this at least once a day with him.

He would position himself correctly in story and group times occasionally needing a small reminder.

There was only one thing he refused...a photograph. He knew there would be a flash, so we asked the photographer to use a digital camera..this child is only 4 and he is so aware of his own needs!

I hope this has helped. :D

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Thanks for that Allan!

 

What an interesting topic this is. I've never had any experience of albinoism, and had no idea it was quite so restrictive in its impact on a child.

 

I hope we can be kept up to date on your experiences mundia - and perhaps Allan and others could keep offering this useful advice? :)

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HI Allan & welcome, if I haven't welcomed you elsewhere!

 

I am sure Mundia will find that really useful and that she will get back to you as soon as she is well enough to do so, in the meantime if you think of anything else do let us know, please.

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thanks for that Geraldine and Allan. We will be having VTS attending when he starts and I hope there will also be some training for us. A few things we are already putting into place, like the blinds. We have been advised to have black coverings on the tables, especially where paper is concerned and to use paper in bright colours, so that there is always a contrast. We also need to cover the corners of tables in a bright colour (one of the problems of having square not round tables!!) so that he doesnt walk into them.

Ive not met him yet but am told he is charming, and as you say Allan, we certainly wont be underestimating his abilities.

Please do come back to us with any more specifics. the more we can be aware of now, the more we can be prepared.

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