Help!!! Son has sensory problems, need advice when dealing with school please??

[mummycanhandleit]

Hi, I am new to posts etc but I really need advice. This is going to be a long one, so I hope your ready lol.
My 4 year old son (5 in May) was born with his lower left limb and arm missing. This in itself was hard to deal with at the start because it was all such a shock, we had no idea when we were pregnant but hey, he's him and I wouldn't be without him. He is very able and does things that we never would have imagined he would have been able to. At 2 I started to worry about his speech. He could talk but his words were not as well formed as children his age so his health visitor referred him to Speech & Language Therapy. Now, the problems begin. My son started nursery last September and once every couple of weeks they were telling me that he wasn't settling and he was hitting out. He wasn't making friends very well and he became obsessed with dinosaurs. They started an IEP with him but things didn't really improve so I got him referred to see a Community Paediatric who said that due to his arm his father and I had give into him and his problems were just down to behaviour but she wanted him to see an OT to see how he was getting on with his physical problems. We went to the OT and the only problems she could see was his pencil grasp wasn't what she would expect for a child his age and she discharged him.
When Ashton started school in September, Oh my word, I can not even to begin to explain what I was feeling. My daughter was born 7th September and born only 5lb 3.5oz and while I was in hospital struggling to get an oz of milk into her the school was sending a daily report home with my 4 year old, P1 child. He was headbutting the other children, kicking punching. You name it he done it. This has nothing to do with new baby as it was going onin nursery only worse now because he was in class for longer period. He would act out a dinosaur or rhino and run at people with his head (school said he genuinely thought he was a dinosaur) he tried to put his head through the glass fire escape door. When the bell rings in school he covers his ear and became extremely upset. He has tried to run away from the teachers at school thinking its a game but nearly got to the road. Finally, the school came to me thinking they needed to refer him to Ed Psychologist to see if he could get a statement for a one to one assistant, then the school informs me they think he has ASD and they would like him to be seen again by community paediatric. We took him to appointment and she said no, he does not have ASD, the only problem is behavioural. Now, Ashton has been diagnosed by OT as having sensory issues, proprioceptional,vestibular,tactile, oral and auditory. Last week I got the letter from the board to say he was turned down for his statementing but a behavioural specialist is coming in to see him once a week. They came up with this before he had his report/diagnosis from the OT about the sensory issues. Can anyone advise me what to do. I think I want to appeal but is there any point?
The school is still talking to me about ASD, I am starting to think they are right myself but my husband does not (I don't know if he is just burying his head in the sand) Could the community paediatric missed ASD diagnosis since she missed the sensory too? Was it too easy to blame the parents for giving in.
Granted we maybe did give into him but we were born with such a special little boy that we maybe did indulge him a bit too much but it could have been worse, couldn't it?

Yup the community pead could have missed a whole host of things - he or she is only human.

Get yourself or your hubby down to the GP and do not leave the building till that GP has written a referral to a consultant developmental pead.

Look on Ipsea for info on how to appeal the refusal to statement and lodge that appeal sharpish. You've nought to lose.

Others will be along shortly who are far more knowledgable than I but I couldn't NOT respond to your post.

If you really have let their comments discipline get to you - there is a book "123 Magic". It's kinda the experts "standard" reference text for parents. It's about £6 on amazon. Get it, read it , (you'll probably find you do most of the stuff in it anyways). Then you'll know how they expect a "good parent" to disclipine etc and it'll give you lots of reassurance too.

It really winds me up how they try and make us doubt ourselves to in order to avoid paying for the help our kids need.

Thanks bochead, I have never posted anywhere before. Thank you replying. I will look out for that book. Thanks again, take care xxx

I was told by community paed that my son definetely did not have asd. To the point where she even cancelled an appointment that had been made by hospital (he had been in with bowel problems) to see the autistic specialist in the hospital. Our community paed specializes in autism. after seeing my ds lots of times and me specifically asking does he have autism was told definitely not. Due to being extremely worried ended up going private (turned out saw same doc who was supposed to see in hospital before appointment was cancelled), was only with him half an hour when was confirmed 100% he has severe autism. At the time he was 4yr 8 mths. He then sent letter to comm paed who apologised and said they were looking for something else (fragile x), she then did own assessment and confirmed yes definite Autism. So yes they do get it wrong (even ones who specialize in the field). And we all indulge our dc cos they are all very special and sooo deserve it

Hi, I know you are not specifically asking for help with regards to his sensory needs, but the book "The out-of-sync child' gives some excellent strategies. Well worth a look.

Also - both retained reflexes therapy and sensory integration training really help improve SPD.