Zemanski

Com came off all by himself - he was only taking a couple of feeds a day by 8 months but then just stopped 2 days before his first birthday, it was so sudden I got serious mastitis. I liked feeding him but 12 months was about right for us. Dot, who's supposed to be NT but has just been referred to CAMHS and has various sensory issues (visual and proprioceptor) dyspraxia and severe dyslexia, was dreadful. She did not stop screaming for 6 months except when on the breast and used to only sleep clamped on (used to draw blood ). At 18 months I went away to force the issue because I couldn't bear it any longer. the major problem I had was that neither ever learned to take a bottle and I think this was mostly about dyspraxia for both of them - once they had learned to suck one way (it took Com ages) they couldn't learn another way (bottle and breast require very different motions). I tried Dot from day one but she just refused point blank and poor old Nemo had a terrible time of it. neither of them would take a dummy either. Zemanski

the proprioceptor sense tells you where your body is in space, how your body is feeling and working. Dot has serious proprioceptor problems which are mostly physical and linked with dyspraxia - she finds it difficult to feel her body, to feel movement and needed holding 24/7 as a baby Com has problems too but his are more about feeling his own internal signals. Olga Bogdashina's book on sensory perception on the autistic spectrum is the best book I've read on this(not the right title but there is a thread in the resources topics and you could do a search for her or for sensory issues - button at top right of page) Zemanski

I can only say it's a good job Com isn't in school at the moment - I fear his attitude to football would get him beaten to a pulp in the current climate Zemanski

I used those bed mats too, they're great but expensive if you're using that many one of Dot's friends uses a special washable one that she gets through her clinic - at 10 she wets, wakes, changes the mat and strips, puts everything in a bucket beside the bed and goes back to sleep. don't know where you'd get these - an internet search or an enquiry at a clinic might work Zemanski

I didn't dye mine because I'm going grey (although I am ) but to keep me out of the classroom so I went vivid purple It worked for a while but now I'm so used to it I forget what it was like to be respectable Zemanski

There was a thread on hunger and the root cause is similar - people on the spectrum do not always feel the sensory messages from their bodies effectively. This is usually to do with the proprioceptor sensory system and it will affect the sense of pain, hunger, thirst, tiredness, temperature, the need to go to the loo, etc Com broke his arm a year ago. It was badly bruised but he didn't seem too bothered so I didn't think too much of it. That was at the beginning of half term. When he went back to school he started to complain a bit that his arm hurt and knowing he doesn't feel pain very well, I realised it must be worse than I'd thought. It took me 10 days to get him to A&E, fortunately it had set straight on its own. Now I take him if he tells me something hurts more than once! It's also possible to have a heightened sense of pain if the sensory system is hypersensitive and also to have heightened awareness of some messages but lower awareness of others. Sensory overload can also have an impact. I had a case once where a child was accusing staff of hurting him and it happened in 3 different settings. It turned out that under stress (particularly in meltdown) his sense of pain becomes so heightened that even a light touch hurts him where generally he needs firm touch to respond at all. Caused all sorts of problems before we realised what was happening. Zemanski just edited because I put vestibular instead of proprioceptor

I know someone who understands this very well from personal experience - PM me if you would like a contact Z

we've never noticed negative effects using the trampoline - we had one sunk in the front garden about 6 years ago, it's out of action at the moment, replacement coming tomorrow courtesy of the family fund the whole family uses it and it isn't just a physical benefit, it also serves as Com's main social arena and a safe space when he's out of sorts the effect you're seeing may well be from over exertion on a hot day in a stimulating environment Zemanski

if there is no language delay (not including pragmatics) then the diagnosis is usually AS. They tend to give a general ASC diagnosis under school age and actually tend to diagnose AS later as it presents differently due to the superficially perfect language use. Most children with AS are not formally diagnosed with that until between 7 and 9, a few earlier but quite a lot later if the presentation is subtle (particularly in girls). Zemanski

hope it all goes well from here on in Z

not quite true LM, AS is an ASC, just a more specific diagnosis, labelling a child with ASC is a general diagnosis and it could be made more specific later. However, if there is language delay it will be autism (possibly HFA) rather than AS, if it is decided to make it more specific in the future according to current criteria. It depends on the consultants to quite a degree as there are a lot of arguments about the criteria for diagnosis of specific ASCs at the moment. Zemanski

They will see soon enough what he is like in nursery and you can back that up but they have also seen him at his best so they know what he is capable of in the right circumstances and what sort of things he will participate in happily sounds good to me <'> Zemanski

a relatively new resource for those wanting to do GCSEs at home also covers KS3 http://atschool.eduweb.co.uk/ctrh/homepage.htm Zemanski

I think you need to talk to IPSEA if you can get through to them - keep trying they cannot call a review meeting (which is what this seems to have been) without giving you prior warning and the opportunity for both you and your son to make some representation and view the documentation the statement is supposed to show what he needs not what they think will get him a place at a school - how can a school be honest about being able to meet his needs if the statement only tells half the story? are they really suggesting that this school can meet his needs or that you need to let him fail there in order to get him into the school you want? Ditch PP if they are treating you like this - your lady should have warned you this was happening and discussed the situation, she is not acting independently. Even if she does agree with the senco she should be telling you that privately and giving you good reasons, not joining in the bullying Zemanski

Com was aware of many of his own difficulties and we told him we were going to see if we could find out why and get some help for him Zemanski

give paracetamol/calpol if you use that with him and stick him in a cool bath or shower - call the GP if his temp doesn't come down Zemanski

ask the consultant to put in his written report that he and you feel she is in the best placement to suit her needs - a good consultant will back up your knowledge of her. if she has a statement already the LEA may challenge the placement at an annual review but you have the right to state your preference and they must abide by it unless they have very good reasons against it, if the consultant and school back your choice then they will have a hard job acting against it. stay strong Zemanski

Donna Williams was non-verbal till at least 9 and still has communication problems in some environments which make speaking difficult for her, Wendy Lawson was institutionalisted for many years on high doses of antipsychotics and last time I heard her speak she was still trying to get off them, Temple grandin was non-verbal for a large part of her early childhood, Roz Blackburn is still very much autistic in her presentation and needs considerable support for day to day living - these people were all considered 'low-functioning' children grow and develop and become adults. Some continue to have severe difficulties in all sorts of aspects of their lives but others do find coping strategies and achieve success in spite of their difficulties and the way society treats them. Only a few years ago it was thought that 'low functioning' autistic children couldn't grow up into successful adults, these 'celebrities' show us all how much autistic people can and do achieve - they are incredibly important to the cause of building awareness and understanding of our children's needs, problems and potential Zemanski

the refrigerator mother theory was debunked years ago, it is wrong and damaging. Parents and carers can neglect and abuse children and this can produce symptoms which can look like ASCs but they are not. I would say that for many of our children being subjected, even at a very early age, to touchy-feeliness would probably make them withdraw further; we respond to our children as they need us to respond to them but if we don't hug them all the time that's probably more to do with them not liking it than the parent having an ASC. I did find the link between the RM theory and the response of people to the deprivation in prisoner of war camps intriguing though. There are definitely similarities between the behaviours of some autistic children and the prisoners but I think he made the mistake of thinking that the root cause was the same - remember that freudian psychology was very much the accepted theory then and this puts almost all the responsibility for mental health and developmental problems on family interactions. I personally think that the root cause for the behaviours in autism is not related to family relationships specifically otherwise we would not have families with both NT and ASC kids raised by the same people but that the different sensory relationships with the world experienced by ASC children are responsible for most of the reactions of autistic kids. The expectations of parents and carers may exacerbate the problems if they do not understand the child's differences, we know that the attitudes of people outside the family can be very damaging to our children because of the lack of awareness and tolerance, but this might suggest that where parents have an ASC they are more likely to understand and support their children in the right way than NT parents might. it is mostly conjecture but it is definitely not the mother's fault! Zemanski

they will take reports from M's doctors too but the stat. assessment doctor has to be an LEA one. Their job is basically to confirm what is being said and to check that there are no other health issues affecting learning - more a general check up than anything to do with the ASC specifically. He will also need to see the Ed psycho, I think the rule is twice, and you should get a visit from the responsible officer at home. Z

I used to do the lying in a field of cows thing when I was young, but I always got scared before they did - all that slobber was just too much to take Com watched with me and kept commenting that he doesn't think like her - in pictures etc When I went to see Donna Williams she made the point that she doesn't think like TG either but that like TG her senses are her primary motivator (she does art rather than cows) and she has actually devoted quite a long section of her latest book to a comparison of herself and Temple to show how different autistic people can be so I found it fascinating to see what she was talking about. It was interesting that Com picked up on the same thing without knowing anything about DW. TG is such a strong character, I found her almost scary in her determination but absolutely fascinating. Zemanski

a lot of toddlers walk on their toes, it's only a problem if it continues past about 3 or 4 years and then it is associated with dyspraxia and autism usually although it can indicate other problems - a friend of mine does it because her muscles were affected by polio when she was a child Z

sorry they weren't a lot of help - I use them mainly to confirm I'm on the right track and not missing anything obvious Z

Dot's school sells water bottles at 20p each (in the past they have had donations from the water authority and given them away) and every child is expected to have one in class and there are water coolers in every corridor so they can be refilled every child is also expected to have a hat and sunblock - we have regular newsletters reminding us Dot's school is being responsible, this is how it should be! Z

Com, almost 14 has loads of support - full time 1-1 including lunch and break,1-1 and group AS specific teaching, group social skills, maths 1-1 (AS level), individual PE programme, life skills, access to quiet area, exit card..... but it isn't working so he's not in school now took till this year to get all that, at primary he had nothing till Y5 and then only 50% and none of the extras