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SN children

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Albino children?

6 replies

camilla2010 · 05/12/2011 07:40

My son has been diagnosed with albinism. Sorry I don't know if that counts as special needs but thought someone might be able to help on here with DS.
He has been for all the eye tests at moorfield his vision is OK and he is wearing glasses. Have been advised to get tinted ones and saw on another thread that different colour lenses affect their behaviour (or i may have misread that)? Does anyone know about that?
BUT the main problem at the moment is his inability to get stuff at school (he is 5).
The primary ed boards were really helpful and suggested visual discrim or visual perception issues.
Has anyone else got an albino child who struggles at school just wondering if his struggles are typical of albino children or just a coincidence?

OP posts:
TOTU · 05/12/2011 09:35

Do you know what type of albinism he has?

And when they said his vision was 'ok' what exactly did that mean? He sees ok as in he doesn't have perfect vision but can get around fine?

I have 2 boys with oculocutaneous albinism. One has glasses but still doesn't have perfect vision. The other doesn't have glasses and his vision will never be great.

My boys are in a SN school (due to some other problems that they have) so I may be limited to how much I can help with regards to accessing help in a mainstream school.

camilla2010 · 05/12/2011 12:29

sorry no I don't - he is wearing glasses and his vision with glasses means he can see the largish print in his books at school but in future they said he may need additional vision aids (he is sort of borderline at mo).
He is 5 and just learning to read at school the problem is that he is just not getting it (ie doesn't recognise 2 words next to each other as the same, phonics hit and miss, no blending, can't write his name).
I just wondered if it could be related to the albinism as vision discrimination has been suggested by some others?
I don't know what I am asking truth be told I just wondered if anyone else had any experience with these problems?
Thanks Totu

OP posts:
TOTU · 05/12/2011 12:50

Ok. I would say the vision and albinism are probably connected and MAY account for some of his reading and writing difficulties. Every child is different. My boys (non-id twins) both have it. One has just started to read a tiny bit and write his name. The other can't. But, like I say, they have other problems too.

The main things I've read about having albinism is generally it means reduced pigment in the eye, which usually causes nystagmus (wobbly eyes). So even with glasses, if your son has this, his vision will be compromised.

He will probably need to sit at the front of the class to see things like white-boards, etc.

As he gets older and learns to read, he will probably need a larger font to look at than other children.

Find out if there is a local Visual Impairment Team that can come and help. Ring the Council. They should be able to point you in the right direction. Or Social Services. Or a local Children With Disabilities Team.

Get a referral to the Eye Hospital via the people/doctors you've already been in touch with.

It's only now my sons are 7 that I've finally got to know they need to see things 6 or 7 times bigger than another child. That was after an appointment at the Eye Hospital Low Vision Unit.

Good luck, x

camilla2010 · 05/12/2011 12:55

thanks totu

OP posts:
TOTU · 05/12/2011 12:55

A couple of links that you may find useful:

NOAH

Nystagmus Network

TOTU · 05/12/2011 12:58

You're welcome Camilla. I always leap on any thread about visual problems, autism or cancer. Smile

Good luck and I hope you get on ok.

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