Malika

Hi This is very important point please make some research about Wendy Lawson who was wrongly diagnosed with schizophrenia and in fact was on the autistic spectrum. This is one of the links, you can find many more searching about Wendy Lawson there are some good interviews with the BBC apana Hope this will be useful thanks for your e-mail about fragile X. Malika.

Hi to all I had the first part of H assesment with the OT about H physical problems : low musle tone, flexible joints, poor balance, difficulties in controlling his muscles strength and his fingers grips , the OT was amazed about how much I understood about my son difficulties and told me that I was completly right (too late for the SENDIST ) the next part will be on Tuesday she will test him to understand his perception of space (spacial awarness) I am nearly sure that this is the big problem H cannot see himself in space more open the space around him worst the problem for this reason he his not free to move as he feels scare and unable to control his movement fully. I am not sure at all about H having fragile chromosome X but he has a big head long hears (respective to all people in the family who have them quite small) his jaw seems to close in a different way his lower teeth covering his upper teeth and one of his hand fold in two parts not in three, of course it is not much but I feel that he should be tested just in case I am quite keen as well to find out if a bad fall he had in the bath when he was 3 would not have affected him. Yesterday I just had the confirmation that he will be seen (eventually) by a specialist in Great Ormond Street. I know as well that many professionals do not advive further test when there is a diagnosis of autism however I think when the child is well supported by his parents he won't suffer from it and further test can bring valuable information and even help the child to understand why he his different than his peers, beside H may as well be a good candidate for epilepsy as my brother was suffering from convultion and his father brother was severly epileptic H had a fit when he was 3 and 1/2 and slight convultion when he had fewer at age 4, hopefully nothing more will happen but I would be reasured if he had a good pediatrician who understand about autism. As for his learning it is too early to say but it seems to me that he is slowing down which could be attributed to the lack of support at school, still it may be better to know. Sorry for such a long post. Let me know your thought and advice, thanks to all it is so nice to feel somebody somewhere is listening. Thanks thanks thanks Malika.

To Lisa Carol Jaded and to all . Thank you so much for your support I had problems to log in, forgotten my user Id (it is not alzeimer Iam suffering from hypothyroidism) The end of the year has been very difficult for my son his teacher has never managed to make any effort up to the end with continuous comment like "I cannot differenciate, I am sure he will learn how to cope with .... thats what's growing up is all about " I did not felt like saying good bye to her and decided to keep H at home for the last 2 days before the end, the problem is now that I do not know wh.ich teacher he will have next year. Nobody apparently was allowed to tell me until the day before the last. I have in another hand ask my GP to refer H to Great Ormond street Hospital for a second opinion I sometime think that he may suffer from fragile chromosome X, beside he has no pediatrician and suffer from tics and even complete cut off from the world, in fact I am not sure if he will be refer at all, in the mean time H has b een booked in for OT assesment this will be on Wednesday the 27th. I had been told just before June that there is one year waiting list (that was before going to the sendist) then after I have lost my case because of lack of evidence they call me for an appointment can't really understand what's going on if this is coming from my GP trying not to refer him...?????? Well I suppose we are allowed to take a break from time to time but not to give up, so the battle will have to continue until something more positive happens. Thanks to all of you this site is great at last I am not alone. Malika.

HI Carole and Lisa thank you for your concern this post is to explain a bit more about what Hapened. I had a representative from IPSEA who thought we had a good case, one of the main problem was that the school did not support me but none of their staff had any training in autism, because my son is "high functionning" and he is not a problem I mean that he is well behave, the fact that he does not make any progress in certain area is not an issue. The other factor was the EP report classifying my son at the top 5% of the population respective to cognitive ability except in language/expressiuon and an EP who has not moved on from 25 years ago and still think autistic have emotionnal problem due to poor parenting and langage problem because of bilingual home (she did not openly put her view on paper but there were so many inuendos). In that occasion I think the panel has not been fair as they did not discuss it at the tribunal and did not gave me the oportunity to express my opinion. The school as well put on paper provision not happening any more or which never happened (none of them being tailored for autistic ) and the panel did not record what we said on the day, as well they asked for evidence of sensory motor integretion while we asked an assesment to establish those difficulties. Overall I think the decision was unfair as they privilege the EP report and not the medical report on the ground that the medical report was partly based on questionnaire to the parent (kind of "look at what a fussy mother we got here") while the SEN code of practice always remind of the importance of the parents opinion; beside the law said that if there is a probability that the child needs cannot be met by the school provision then an assesment should be done the law does not say that we need all the evidences but just talk about "probability" Well Carole this is more or less the situation on principle I should fight it and go to Hight Court but I cannot be sure of the outcome and to find a solicitor specialised in education and to be able to finance the case is a much more difficult matter. At least I have learned a lot about autism and SEN. Thank you for your concern I hope your survey will go well. Malika PS I think the panel is just following the new government directive "no more assesment no more statement"

Hello Carole and to all. I am new to the groupe and quite glad to express my view on my son sen provision, very poor in fact as it seems that where I live only few professional "believe" in Autism at least in my son autism he has been diagnosed last september after 2 years struggle with the school, he is nearly 8 years old and had 18 month speech delay at the age of 5. I have yesterday recieved the answer from the Sendist that they have dismiss my appeal for statutory assesment, on various ground like discrepancy between the NDT assesment and the EP assesment. Well I am still in shock wondering what to do, we do not have enough money to go for hight court proceding, and it seems so odd to have to go to hight court to obtain an assesment. I feel quite numb now after crying so much for the last two days, if just I could find a solution please any idea is welcome. Thanks Malika. :