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Here are some suggested organisations that offer expert advice on special needs.

SN children

NF1 and AS

6 replies

cocolepew · 02/04/2008 18:06

My 10yr dd has Neurofribromatois type 1. For a few yewars I noticed she has elements of Aspergers, but put it down to her NF. Nf has a massive range of physical and emotional symptons. Just in the last weeks I have decided it is much more likely to be AS. She is very bright esp. at science and maths, doesn't like to look you in the eye, very literal and has never told a lie. Is having more emotional outbursts, which could be linked to hormones. Her social structure is not too bad, when she was younger if other children didn't play what she wanted she had a meltdown, but now she knows to remove herself for a situation that is causing her distress (after a long, long time encouraging her to do this). She has had a couple of friends all through school, but now another girl has joined her 'group' and now she is being bullied . She has always had obsessions, latest is Dr Who and Harry ruddy Potter. Does anyone have any advice or have a child with NF1 with similar behaviour. I'm wondering whether to try for a diagnosis, even to help her to understand her emotions as she matures, and so that the school maybe able to give her more help re: the bullying.
Thanks in advance.

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cocolepew · 02/04/2008 18:19

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cocolepew · 02/04/2008 19:34

?

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Blandmum · 02/04/2008 19:35

I have taught a student with NF, no AS symptoms but some fine motor control issues only

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cocolepew · 02/04/2008 19:38

OK thanks. I was looking online and there was a few forums about this, in the US. I just don't know whether to go down the diagnosis route.

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TotalChaos · 02/04/2008 19:41

I don't really know anything about NF I'm afraid, and my child is very much younger than yours but I'll have a stab anyway. Sorry to hear your DD is being bullied - I hope that the school are helpful and have robust policies to nip this in the bud. I would imagine it is worth looking for a diagnosis - if she feels that she doesn't fit in, then I would think that a concrete explanation that it's different brain wiring rather than that she is in anyway "bad" or "undesirable" would help. Also having a diagnosis in place would hopefully help with transition to senior school.

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cocolepew · 02/04/2008 19:44

Thanks the more I think about the more I think I should go and do it. I work as a CA in a special needs school so I know some of the hassel invovled in going for a diagnosis. But my dd's emotional well being is more important.

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