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Ds - Sensory stuff. Behaviour. Social Stuff....who do I discuss this stuff with??

(3 Posts)
hazeyjane Sat 21-Nov-15 21:38:20

Ds is 5 and a 1/2, he is non verbal, but has 'average understanding of language for a child of his age', has physical and health problems and is thought to have a genetic condition, possibly Kleefstra Syndrome, but possibly not! He is part of the DDD study and we are hoping to get a definitive diagnosis from this.

He is at a resource base for complex needs, within a mainstream school, he is under SALT, physio, OT (rarely sees), orthopaedics, dietician, opthamology, genetics, general paed and respiratory paed.

He is pretty covered for the issues he has, but increasingly there are things that are very difficult that aren't addressed by school or any of the above professionals, they are just seen as part of ds - but I don't know if they are 'a thing' ( I realise I am not explaining myself very well here!) When I have said that I thought ds had some behaviours that seemed 'autistic' in nature, it has been dismissed, but some of his behaviours just seem out of kilter and extreme.

I'll list them....

He has always had sensory issues - he hates certain loud noises, he likes twiddling hair and ribbons/pieces of wool, he has very sensitive skin - hates labels, waistbands, often complains of his skin feeling 'sore' (he tells us on his electronic talker

He has always been very clingy - it took months to leave his side at preschool, even at very familiar houses with friends he will try and climb all over one of us, or have to constantly be holding onto one of us.

He has a very restricted diet and doesn't try new foods

If you asked him who his friends are, he would sign the names of 2 or 3 boys in the unit, but he doesn't really want to do anything with them - he gets very upset if they touch or hug him, he doesn't want to play with them. When I see him in the playground at she is usually stood holding the hand of an adult. He likes to be with adults, he doesn't like toys, but likes to play imaginative games like - there are pirates coming in to steal our cakes, and he is going to call Spiderman on the phone who will swoop in and fight them - these games are very very repetitive although we come up with new ones and they are very imaginative ,he wants to play them endlessly with one of us or his sisters.

He has a great sense of humour, gets everyones jokes, loves drawing and is very focused and particular about things like drawing and stickers and get very cross if they aren't the way he wants them to be.

He very controlling - as in, if he doesn't want to leave the house, he will get very very upset, and scream and cry, if he wants to play with one of his sisters, but she is busy, he will become hysterical. It is nearly impossible to give him a bath, and hairwashing is like torturing a cat. It would be very easy to have a day where he just screams and shouts at people, until he ends up sobbing.

His teacher has been talking him moving into mainstream, when he is in juniors, as his understanding is good and he is able to access some of the curriculum. The ed psych is coming to evaluate after Christmas, and at the next meeting we have, options for juniors will be discussed as well as the level of support. I fear that ds's abilities, mask some of the difficulties he has, and am not sure how to broach this. A lot of the above behaviour is something that affects ds at home, but is not so visible at school - so who should I bring it up with?

I realise I have written an absolute essay, but I need to get it sorted in my head - and I am not sure who is the best person to talk to about the above stuff!

PolterGoose Sat 21-Nov-15 21:48:04

Message withdrawn at poster's request.

PolterGoose Sat 21-Nov-15 21:49:22

Message withdrawn at poster's request.

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