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Hi everyone,

I need help re schooling. My youngest child has microcephaly, global developmental delay, high pain threshold, UV allergy, dental issues( which mean he has to have a controlled diet), sensory processing issues,hypermobility and ?seizures (bizarre eye rolling rapid blinking episodes), to name a few of his problems. He is queried with having mild cockayne syndrome or another DNA repair disorder on the same spectrum. He is nearly 4 and has to start school next sept.

He has not been in nursery. We have spoken to the ed physc, who agrees that he is delayed but said that it does not mean he has learning difficulties (that makes no sense to me). She told us that we cannot get Dillan statemented as he has not been in a school setting and that he will have to go to mainstream school with no support. He is incontinent (completely does not tell you even if he is soaking), cannot feed himself with a spoon, has speech delay, his understanding is quite poor. He has to have no sugar in his diet, no fruit or yoghurt even and has to have prescription suncream applied on sunny days.He also does has reduced sweating so can get hot easily. He cannot dress himself,wash his hands anything like that. His high pain threshold also means he has to be watched incase he hurst himself. He is also very small, still wears age 12-18 months clothes.He has also just recently had an episode of cyanosis so that has to be looked out for as it could be sign that he has a heart or lung condition.I cannot see him coping or being cared for properly without any support. I really would like him to go to an MLD school where the classes are smaller and he could have some friends like himself. I so hate having to put all this negative stuff about him I haven't put all of it, he is a lovely sweet boy.

What can i do to get him either support or in a special school?
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Statementing can be done before mainstream our Euans statement was done whilst he was in nursery Smile
Could you tell me more out the fitting?

As statement can be done on medical grounds so if you could detail a full medical profile ill happily give best information.
Also you can apply for a statement yourself but ill give this information in full with more background Smile
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Hi there my sons statement was done before he went into reception. First, as Daniel has said, he had it done on medical grounds to get the ball rolling and then the learning difficulities added later down the line. The school would not take him without a statement and full time hours and made this very clear to all involved which helped it get done very quickly. Have you spoken to the headteacher of the school about it and the SEN at the town hall? x

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Hi do you have a social worker or does your son have an open CAF ? If so contact the person responsible for your son and ask them for help. Also if he is under a child development centre the team there should help with all the relevant medical reports.

Good luck
Life is not about waiting for the storm to pass, but learning to dance in the rain .....
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hi my my son alfie was statemented at age 2 for an early nursery placement at a local special needs school. his portage worker requested a visit from ed phyc who came to do a home visit and then recommended he be statemented, like your son alfie had no formal diagnosis at that point but it was very apparent he would not only be unable to cope in a mainstream setting but that he wouldnt benefit from it either. He is 3 1/2 now but can not walk, talk, feed himself, is in nappies with no awareness, global developmental delay, high pain threshold the list goes on. nobody ever mentioned learning difficulties all though it is quiet apparent until his statement came through and he is now classed as having severe learning difficulties. i know it varies greatly depending on which area you live in how willing they are to statement children, i believe we are extremely lucky in lancashire. however i do have a couple of friends who are teachers in other areas and i would recommend you contact the school your child would be attending and also your local education department, quiet often the school are reluctant or not willing to take the child without something beibg in place, especially a child who requires one on one support.
i really hope you get something sorted for your peace of mind, good luck x
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