General Chat

Many thanks Snowdrop.. Will follow it up.. My daughter has spent the last 2 years fighting to get a diagnosis.. and she is a fighter. many thanks Grayx

Muffy's right - the Coeliac Society should be able to give you some good advice x

My grandson became diabetic aged 4 and the school was brilliant.Always testing his blood and if he was high they would take him out of class and put him in with a class doing p.e.My daughter never had to worry.The only thing she did not like was that he was called special needs.Annie

Your grandson will need to have a statement of special needs to give the school specific funding for any recommendations he would need (ie: assistance with toileting/changing). Note they are only recommendaitons and until the funding is in place do not take their word for it - it won't automatically happen without you constantly pushing for it. Unfortunately it will not be an easy road and you may need to fight every step of the way (depending on your LEA). But the sooner it is implemented the better. There is a thread entitled 'Autistic Spectrum and Special Needs Kids' from Maz in the East End which covers a multitude of special needs questions and answers. I will bump that up for you. Sorry if I sound so down about things - 18 years of putting my daughter through special needs education taught me lessons. Once everything's in place it does work - honestly!! Snowdrops

Helen, Thanks for your reply This is in Herts.. also came from the special needs teacher. Grayx

Why does everything always come down to money? It is such a shame Is there not an association or help group for the condition which could maybe guide you through it. My friends nephew is an insulin dependant diabetic and the diabetes association have really helped with things like this.xx

Muffy, School knew the full facts when my daughter applied for the place and a place was offered.. now because of no funds.. Grayx

I think you need to ensure that you raise this with the Education Authority. They have to provide education for a child and if there are special needs they must provide the resources to meet them. I know of a child in a primary school in Herts who wears nappies and is accommodated. My own primary school had work done in one of the toilets to make provision for changing nappies should we ever have a child with these needs. Your head sounds a bit out of touch. nell

My oh is an undiagnosed (4yrs on) coeliac. I really feel for you but surely they have a duty of care to cater for every condition especially as this doesn't affect his brain! Get some advice from your health visitor and local authority. I'm sure your local press would be interested too. This is total discrimination! My OH has just seen gastroentologist who suggested he eat 6 weeks worth of gluten before his endoscopy would show anything. Second opinion said that would probably kill him! It seems this condition has yet to be accommodated for - but I'm sure if your son had a nut allergy the school would cater for him and there should be no difference. Makes me v v angry for you and your son who can't have any easy time of this anyway - its so unnecessary xx **update - sorry grandson**

Thanks Julia for our reply, They have been in touch with their local LEA.. but no joy so far. Grayx

Oh how awful.. I have no advice at all I am sorry, but I really feel for him poor little love. I am sure that given the choice, he would choose not to have the condition in the first place. Only thing I can think is to maybe ask to have a face to face talk with the head of the school and make sure that the school knows the full facts of the medical condition. I do hope it gets sorted out as soon as possible for the little boys sake. xx

Have to have a rant.. Grandson aged 4 is coeliac, due to start full-time school in September. Because of his condition has to take laxatives daily. Therefore still wears a nappy as he does not have bowel control. He was offered a place earlier in the year them knowing the situation. Now , because he is still in a nappies(needs two people to change him, government safety guidelines) Head is saying they cannot fund this. In fact she was horrified that at 4 he was still in nappies.(No fault of his) He has to go to school, the law says so, so what do they do now?? Your thoughts are appreciated. Very frustrated and angry Nana.. Life is going to be tough enough for this little lad.. Grayx