mossgrove

Welcome Karen, glad you found us! My name is Simon and we have two boys on the Spectrum (7, Aspergers and 5 ASD) as well as a younger boy and girl. You'll find answers to many questions if you wade through the topics here. If you cant find the answers you need, feel free to post away, there are some wonderful people here who will be happy to help. Simon

LKU I've only just read this phrase. It could only have come from someone who has read a *little* bit about autism and now thinks they know it all. Many autistic people (especially at the higher functioning end) may appear as if they don't care what people think, or about the consequences of their actions, but are just as capable of feeling remorse when they realise the consequences of what they have done as anbody else. Why do they allow people who know so little to have such a big say in our childrens futures? I would go back to CAMHS and say that you would like to see a different doctor (i.e. one who knows about Autism). You may have to wait a little longer, but it will be worth it in the end. Simon

Well done! I am delighted things went well. Simon

Drift Your LEA will almost certainly have ome kind of a support service to help teachers deal with autistic children in the mainstrean environment. We badgered the school into requesting a visit. Simon

Tez I'll reply to your PM later, but I think we might not be talking about the same thing! Simon

Our son is a bit younger than yours, but we had similar comments from school. We arranged for the LEA autism co-ordinator to go and observe him in school, hi portage worker and the complex special needs worker from CAMHS did the same. They told a very diffeent story. The most likely explanation is that your SENCO has no real idea what is going on, and is using the fact that your child is not being disruptive to conclude he is coping. Sadly this mistake is all too common. Simon

Our school does this sort of thing too. It's why we are trying to place our children somwhere else! Simon

Tez I would not dismiss the idea. We found it useful for our 5 yo who is also non-disruptive and has sensory issues. One of the end products of the 6-8 week placement is a written report which is immensely useful as 'ammunition' if you need to argue for more provision. Why not ask to visit before you make up your mind? We did and it turned out to be a wonderful place with some wonderful and understanding people there. PM me if you want to know more as I am sure these units vary up and down the country. Simon

I should have added one thing,which may seem a little obvious, but I'd just say: "Make sure you know what is going on!" I have heard of cases where the meeting was so overcome by jargon and insider talk that the parent concerned had not even been aware that the meeting had 'agreeed' a porposal to reduce the level of care. If they are taking past you or over you, don'ty be afrais to ask them to stop and explain. Simon

Good luck with the review. I would flat-out oppose any attempt to reduce the hours. If they establish over the course of the next year that they can gradually reduce support that is one thing. Asking you to agree a reduction and trust that they will put it back later if the provision doesn't work is quite another. The main thing I would do is to go through the statement tonight clause by clause and see if I agreee that the provision has been met. You may well find gaps in last years provision. If you are constantly asking for extra resources to be put in to plug these gaps, it make it much harder for the LEA to argue that things are going so well that provision can be reduced. Simon

I haven't read it myself yet! It's all very recent, we got a phone call last night to say the letter was tready for collection, my partner will be collecting the letter on the way to work this afternoon. I'll PM you tonight if I get to see it (But it willbe quite late). Simon

Barefoot We discussed this with our GP. He needs to write a letter addressed to 'To Whom it may concern" This is important, because if he wrote a letter to us, or the headmistress or any other named individual there are potential confidentiality issues if we wish to make and include copies in statement requests etc. THis doe not arise for 'To whom it may concern' letters. I think we were lucky that our GP is so aware of the issues. This awareness may not be universal. Simon

<'> You've been to hell and back to get this far. So many people are having such a hard time at the moment, it's wonderful to log on and read some good news. As you said, there are some more hurdles to overcome, but if you are still up and reading this, it's time to pour yourself a big drink, then go to bed for a well-earned rest. Simon

I should have added that our eldest has full-time 1:1 support and the school were entirely supportive throughout the process. His form teacher was the same teacher we are having problems with now. Our 5 year old's needs are far more profound than out 7 year olds. The main practical difference is our eldest is very disruptive under stress and caused many 'in your face' problems, so his help was organised vey quickly. Because our 5 year old causes other pupils no problems, the school are draggin their heels every step of the way. Simon

I know exactly where you are coming from. We have a 5 year old boy who has recently been diagnosed by a consultand pediatrician with autism and ADHD. He didn't speak until he was 3 and still has major communication issues, especially when under stress. He still does not know the name of a single other person in his class and curls up into a ball when any other child speaks to him, and has yet to learn anything at school. He only attends aftenonns with 1:1 support (Grudgingly given, but was agreed in writing by previous headmaster.) He had portage prior to schol, speech and language therapy, CAMHS complex special needs support, and went three mornings a week for several weeks to an assessment unit where they concluded that he had major attention and communication deficits and would require intensive 1:1 therapy in a special school environment if he was ever to be 'taught' anything at all. When we tried to send him full time to his mainstream school his behaviour deteriorated alarmingly and we saw some self-harming behaviours. During this period we could only getting him to school by physically dragging him there and he would frequently undress himself three or four times in the run-up to leaving the house. I mention this only because his class teacher had independently reached the opinion that he was 'absoluterly fine' and suffered from nothing more than over-anxious parents. The difficulties getting him into school and the behaviours afterwards were dismissed as being a matter for the parents and not the school. The asessment that he was 'absolutley fine' appeared to be based on the fact that at school he retreated into himself and did not disrupt the class, and therefore needed no extra input. The fact that he wasn't learning anything, would not accept direction and spoke to no other children didn't seem to concern her at all. She had not identified any special needs and recommended at least two terms of full-time education before asessing him again. It sharply illustrates the lack of understanding by many professionals, especially teachers, that autistic children do not always misbehave at the time. "coping in the classroom but melting down at home" is very common and often leads to bewilderment on the part of teachers who can see no further than the fact the child appears to cope in the classroom. At the end of the day, if the school haven't got a clue what they are talking about, and it sounds like they haven't, you will have to by-pass them and request an asessment of Special Educational needs yourself, which is what we are doing. In order to do this you will need as much input as you can get from the 'medical' side iof the fence. If you do not have a diagnosis you need to ask for one, and you need to get any specialists who have dealt with your child on-board as you will need their support. One thing you can do is speak to your GP. We are also having problems with our eldest (7, Aspergers) who is different from your child in that he is not coping at home or school. Our GP has written us a letter stating that continued full-time attendance at his current (mainstream) school will be detrimental to his mental health. We will only be sending him three days a week from now on, while his staement review is processed. We hope to have him in a special school or a dedicated autism unit in September, but there are many battles to fight before then. The reason we haven't simply withdrawn him from school, which is what our gut intinct tells us to do, is that we have been advised by almost everyone that it is better to try and maintain some kind of relationship with the school while the asessment procedure is underway. If we do get a place sorted for the autumn term we will withdraw him from school until then. Sorry that this has turned into a bt of a ramble, but I hope some of it has been useful! Best of luch in whatever you decide to do. We know just how hard it can be! Simon

Helen I think you need to get some advice and fast. It sounds to me like the LEA are making it up as they go along! In out area I have never heard anything about panels meeting in secret without parents knowing who is on the panel and documents being shredded immediately afterwards. Being as there could be a tribunal hearing later on or potential judicial review if you wanted to take it that far, I would question the fact that they have the legal right to act as you have described.It hardly sounds like open government! Does anyone know if this is legal? Simon

Rick Wecome to the forum! You'll find plenty of help here. I am not sure what 'level 6' means in this context, you may find that term isn't recognised over here. A good place to start would be the National Autistic Society website at http://www.autism.org.uk They also have a helpine you can ring, and can probably put you in touch with people in any areas you may be considering. We have two children with Autism, one is in school full time, the other part time, both have 1:1 support for all the time they are in school. (They wouln't cope without it). Please keep coming back here! Simon

Fingers crossed here too!

Our AS son (7) would eat all the time if we let him. There seem to be two main things driving this. 1. there is definitely a sensory issue where he simply doesn' know when he is full 2. He 'comfort eats when under stress, which is most of the time during term time. This ends up making him very self-concious as he is about half a head taller than anyone else in his class, and he has also become quite chubby too. Haven't got any answers I'm afraid! Simon

Kathryn Good luck next week Simon

Not sure if this helps, but describing our 5 year olds behaviour might clear things up a little. In the opinion of ourselves, his consultant, an asessment unit, his portage worker and several other people our son is almost certainly on the spectrum. His formal diagnosis is due on Monday. In pre-school the staff there thought he had no issues and was doing fine. How can this be? The answer lies in what the children are being asked to do. Our son was non-verbal until 3 and still will not talk to anyne he doesn't know or like, he will simply ignore them. In pre-school the environment was very unstructured, nobody forced him to inetract so he didn't. He was somewhat overrawed by the situation and his behavious outside of pre-school deteriorated alarmingly. But he did not disrupt the class, he was not overtly upset and didn't do anything to make the staff take notice. So the staff though he was fine. He wasn't 'normal' either though. He showed no interest in other children, spoke to nobody, didn't 'join in', didn't really learn anything. I think what your EP was saying is that yur daughter is not doing things in such a way as to bring herself to the attention of the staff. As your daughter is not unhappy at the nursery there are things that can be learend from proactive observation of what she does, and the interaction will help her development, just don't expect staff with no training in ASD's to notice much. The specialist nursery provision will recognise your daughters issues, and help her work to overcome them, so there is a role for both types of provision. Does this make sense? Simon

Rabbit I am not sure that his hands are quite as tied as he says they are. You're getting to be vey good at this now, time for another round of phone calls! As I am sure you have found out already, it is the parents who don't accept this kind of cr*p that get the best for their children, your son is very lucky to have you! Simon

Sallyanne You are doing a great job! One of the things that will come into play is the amount of resources that are needed to meet your son's needs. In particular it would be useful if the head teacher could emphasise that he is already devoting considerable resources. In our LEA area they have a units system, there may well be something similar in your area. It works like this. Full time support is assessed at 12 'units' of provision. The school is responsible for provising the first 5 units from within their SEN funding. Any units over and above that are provided by the LEA via the statementing process. The LEA have a policy that they will refuse all requests for statutory asessment until the school has provided 5 units of support for at least two terms. If the needs are less than 5 units worth of provision they argue that a statement is not required as the school is able to meet the child's needs. It the child needs are above that, they will not proceed until it has been demonstrated that 5 units of provision is insufficient to meet the childs needs. The only exception to this seems to be where a child needs are such that they do not go to mainstream at all. This is an unfair system because it introduces an unecessary delay in getting provision to children with a high level of need, it risks prolonged disruption forthe class if the child is painly not coping, and it makes it nigh on impossible to get a statement if the school is not fully co-operating. I mention it only because it is entirely plausible that your LEA is taking a similar view. Strange as it may seem, you may need to emphasise the amount of provision you child is already getting just as much as you need to emphasise the needs that are not yet being met. Simon

We know the feeling all too well. The LEA initially turned us down for an assessment, let alone a statement. I understand what a gruelling, demoralising process it can be at times. Ultimately we were successful on appeal, and now have a statment that includes full time 1:1 support. Do you mind me asking if they have assessed D and declined to issue a statement, or declined to undertake the asessment? Simon

Rabbit Sorry things seem to be going from bad to worse. Our eldest (7) had major issues with us going out in the evening, to a point where we didn't go out at all for a spell. He is a bit better now, but at one point we were able to resume going out by taking walkie talkies with us t the restaurant so he could speak to us at any time. (Restaurant was walking distance). He isn't actually need to use it much, bit knowing he could speak to us kept him calm. Walkie Talkies can be bought cheaply from Argos. (about �20-30 a pair). He is better now, but we still make sure we take mobile phones with us, and tell the babysitter to ring us on Jacks's behalf any time he want to speak to us. I hope you get you CAMHS referral soon. We get a lot of support from their complex special needs service which has been a real lifeline over the past few months. Simon