Cat

I have tried to send out invites for the group - in fact it tells me that I have sent them out but I suspect that no on has received them? There is now a group on facebook - not mine but if people are interested I could post a link and try again with the invites. I have no idea why what is wrong with the group Cat

I have been asked to forward the following Cat Dear Colleague As you expressed an interest in the Lamb Inquiry meetings during the summer, I thought you may be interested in the email below which we have been asked to circulate. Kind regards Anna Route NDD Programme Officer Subject: TreeHouse to host Brian Lamb webchat Dear all, I hope you are well. I’m just writing to let you know that Brian Lamb OBE will be logging on to the TreeHouse talk about autism forum on Friday 27 November to take part in a webchat about the Lamb Inquiry and answer questions from the public. We would be grateful if you could pass information about the webchat on to your networks of children and young people with special educational needs and their parents to let them know that the webchat is happening and that it will be a great chance to find out more about the Lamb Inquiry and put their questions to Brian Lamb. The webchat will be happening on Friday 27 November at 2pm GMT at www.talkaboutautism.org.uk. This follows on from the TreeHouse Annual Lecture 2009 on Monday 23 November, where Brian Lamb is the keynote speaker. If you have any questions, don’t hesitate to get in touch! Best wishes, Robbie de Santos

I think that you will find that what you ex is doing to your boys could be classed as emotional abuse and would be treated very seriously. I would certainly have a word with a solicitor because you ex needs to be stopped from doing this to his kids. Emotional abuse is now taken very seriously and your ex needs to understand this. Cat

It as whoever was reviewing the papers on BBC News 24 who angered me more that the article itself. The woman (sorry I did not catch her name) commented that it was probably an appropriate use of the word autistic when used in connection with the Conservative Party who are disconnected from reality Cat

The biggest issue with home education is not actually educating the child it is the fact that Local Authorities either do not know the law as it stands or ignore it and some of them appear to have not even read the 2007 EHE guidelines, and they are still the guidelines being used at the moment even though all of that is probably going to change very soon. At the moment the law clearly states that it is the parent's responsibility to educate their child, and I do mean every parent's responsibility not just those of us who do home educate, and that part of the law is not going to change anytime soon. Parental Duties: Section 7 "The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable; a) to his age, ability, and aptitude, and b ) to any special educational needs he may have, either by regular attendance at school or otherwise." As parents are responsible for ensuring that their children are properly educated, it is their decision whether to use schools or provide education at home. I am trying very hard not to be offended by this statement because I know that it was not intended to be offensive. At this moment in time you have, as the law states got to supply you child with an education that is suitable to his age, ability and aptitude and any special educational needs that he may have. There is no ‘minimum standard’ that the child would receive an education in school that applies. School is a building Education is wherever we are. That is how I have always viewed educating my sons at home, something that I have been doing for the last 11 years. I have never felt the need to separate myself as a Mum from myself as a teacher because we do not do home education as if we were living in a school. Some parents do pay for tutors we did this ourselves at one point and I would never rule out doing it again. But you do pay for these tutors yourself because once you have de-registered your child from school then how you educate your child does become your responsibility. Receiving funding for home education is something that has been floated because of the Badman review but when I was asked if I would accept funding to help to educate my son at home, while I was giving evidence to the Select Committee who is looking at the Badman review, a couple of weeks ago, I said no. I personally do not believe that funding will be available for starters and I find it quite ironic that the funding was not available in the system to support my sons but will now be made available to me to educate them at home. There are many many myths surrounding home education and sadly LAs are often the people who subscribe to or actively promote these myths, which does not help parents who has decided to home educate. Cat

My son was 13 when he finally got his diagnosis and I know that we were fortunate that he accepted the diagnosis. It answered many of his questions because he knew that he was different. But knowing and accepting are two very different things. Who wants to be different to everyone else at that age? I was very worried about how my son would take the diagnosis because in my own head I thought that finding out that you have a form of autism at that age must be like finding out that you were adopted. I am not proud of the fact that even though my son accepted his diagnosis I had to trick him to get him to leave the house for the ADOS assessment. My youngest had just been diagnosed with High Functioning Autism, had he not have been my middle son would probably still be un-diagnosed but that is a different story, and I told my middle son that the Doctor wanted to see him to talk about his brother's autism I then had to keep my fingers crossed that he would actually comply with the assessment. He did but he tells me now that that was only because he thought they were trying to find out why him and his brother were different. It was not a time filled with happy memories that's for sure. In a way accepting a diagnosis is not as important for your daughter as it is for you right now. Even without acceptance you can develop strategies that will help her. For us it was adjusting the way we were with our son as opposed to the way we had been with him for the 13 years before we found out for sure, although I had known from him being 3 that there was something. There are parents on the HE-SP list, which is where you will find those of us home educating our children with autism and other sens, whose children never actually got a formal diagnosis for many reasons. One being that they were not believed by the medical people. But by making adjustments to their lives and allowing their children to be themselves without the pressure of having to try to be normal they have found a way through. I will shut up now because I sound like someone who has just seen the light Here is a link to the HE-SP site http://www.he-special.org.uk/content/joinhere.php Cat

We ended up home educating our son Julia after two disastrous attempts to get our son back into school. Neither the school nor the LA could actually understand that our son could simply not attend no matter what. I was not happy having psychiatrists having their fingers in our pie either because some of the things they suggested just made matters soooooo much worse and that in turn made our son worse. I joined a home ed list and it was like someone opening the windows and letting the fresh air in. Not only did the parents on the list fully understand where we were at, they also had some really good suggestions and ideas as to how we could move on from where we were. I have been a member of that list for 7 years now. Although my son was very bright he could not cope with school work so instead we did life skills and communication skills. He still makes the best lime cheese cake I have ever tasted in my life and he can change a bed faster than I can. He's not bad at cleaning windows either. Once he had calmed down, which did take a long time, he started watching programmes on the OU and also started watching teacher TV. This actually proved to be a very good thing because he did eventually want to learn again. There were times when my son’s one and only friend (who thankfully stuck with him) would stand having a conversation with my son through a closed bedroom door because my son refused to open that door to see his friend. My son does go to the pictures again now, he plays pool, he is an avid Ice Hockey Fan and he has a season ticket for our local team. He has loads of on-line friends and they talk on skype or whatever it is called and I would say that he is now happy and comfortable in his own skin. For many years he was not comfortable in his own skin and the people who all wanted a say in his life were all seeking to normalise him in my opinion. I did not want him normalised. I wanted him to accept himself for who he was because who he was and still is, is a pretty OK guy. Once my son found himself he found an inner peace and that was when things started to improve for him.

We had this with my middle son who practically did not leave the house for four years. Yes it was a great worry while it was going on but I realise now that he physically and mentally needed this time at home. It is difficult when there are other children I had a toddler myself during this time and had to ask my Mum to come and sit with my middle son because although he did not want to leave the house he did not want to be home alone either. My son had suffered a breakdown in year 7 and he never returned to school. If your daughter is quite happy then I am tempted to say try not to worry. We offered our son opportunities to leave the house but it really had to be something that he wanted to do or mean something to him before he was interested. Forcing the issue just made him ill. It all started to change when he became 16. He started asking if he could go out. He wanted to socalise with other young people his own age, something he had never been interested in ever, and he started to care about what he looked like, and smelt like to thank goodness. As for the missing out on things. Your daughter is only missing out on something if it is something that she wants to do. It took me a long time to come to terms with what I thought that my son should be doing and what he actually wanted to do. The two things were totally different. My son did not want to see films, go to theme parks, watch footie, go swimming, have sleep overs etc etc. It was me who thought that he should be doing them. My son is 22 now and has the social life that is right for him now and basically that is all any of us can want for our children. Cat

We spend a great deal of time telling our children not to speak to or accept anything from strangers, and then we actively encourage them to believe that it is OK for a strange man to come into our homes while we are all sleeping to leave gifts for them? It never quite added up for me and I know which message I thought was most important to get across to my two autistic kids. I know I know I am Ebenezer Scrooge in female form Cat

Christmas has never been a magical time for my sons more of a total nightmare really. They hate surprise and they hate change. Until a couple of years ago my two always looked dreadful all day on a Christmas Day and never ate a things because they were so stressed. In fact having Christmas Dinner was part of the day they hated most because it just re-enforced the fact that Christmas Day was a BIG issue. So we changed it all to make it easier for them to handle. They both need to know well in advance what they are getting although the younger of the two can handle the odd surprise if he has to. For the last two years they have picked the menu for the day and we keep the day just for us and my Mum who they see on a daily basis anyway. I told my two at a very early age that Santa Claus was not real because neither of then liked the idea of a strange man wandering about the house in the middle of the night. But then we did not have any younger children, well I suppose we did when my youngest was born because there is a ten year age gap, and although his elder brother never said anything the youngest was much happier once he realised that Santa was made up. I also know a family who did not tell their autistic son that Santa was not real until he was 10 and he took it very badly indeed. I am not sure that I would discuss the options of what 'Santa wants to do this time around' because when he finally finds out that Santa is not real he might start asking why you lied to him. Allowing him to continue believe is one thing but making Santa even more real and giving him an even bigger role to play would not be something that I would consider doing but you know your son best. My sons consider anything that I make up to be a lie. There are no in-betweens. My youngest does not mind more than one gift and he does chose to spread them out over a few days or even weeks. We give him the gifts on Christmas Day and then we leave it up to him to decide when he wants to open them. Three years ago he finally took his DS out of the box to play with it in February. Cat

Welcome to my world <'> <'> Cat

Welcome to the world that those of us who have children 16 and over often inhabit <'> My own son who is now 22 years old has seen no one from the age of 16 and even though he also has a serious visual impairment he does not have a SW either. We have really had to get on with things alone. My son is probably gifted and talented academically but he has never been able to find that out for sure because he was never able to attend a mainstream college and although we have ESPA sitting on our doorstep because he had never had a statement he could not attend there either. However I am pretty sure that ESPA admit pupils now without a statement. What would your son think about distance learning? It’s not ideal but there are lots of subjects on offer and it is at least a way for your son to continue learning is that is what he wants to do. Here is a link that will at least give you an idea as to what is on offer http://www.distance-learning-centre.co.uk/ but there are lots of other places that offer distance learning. There is also the OU they have quite a lot on offer too http://www3.open.ac.uk/about/ Has your son managed to make any on-line friends? It took my son a while but he now posts on some groups and forums and actually has his own you tube channel where he has become on-line friends with several other teens and adults who also have AS. It really has helped our son a great deal and he now also talks to his friends via skpe or whatever it is called. The emotional and chronological age of young people with autism rarely match up. Even though my son is 22 emotionally he is nowhere near that age but he is slowly getting there. I have just finished helping to draft the National Autism Strategy for Adults, goodness only knows how much of it the DOH will actually write up – but it is now well documented that there is nothing out that for the majority of young people aged 16 and over who have a diagnosis of autism. We are hoping that now that the Autism Bill has just been passed and will some become an Act that things will change. But I still think that it is going to take autistic adults and parents and carers to affect change in their own back yards, which is wrong but if we can make this happen then it is something that I personally will do. Cat

Where is the 'groan' avitar? Cat

I think the good news is that now we have a framework complete with screws. When you have screws you can always tighten them This is worth watching Cat

Today we have made legal history! The Autism Bill has made it through its last parliamentary stage, and will now become the Autism Act 2009: the first-ever disability-specific law for England. The Act will guarantee a future Adult Autism Strategy that will introduce a range of legal duties to improve local services. We will of course continue to campaign until the strategy makes a real difference to people affected by autism. You, our members and campaigners, and the wider coalition of autism organisations across the UK, have all been vital to achieving this landmark victory. Thank you! For further details please visit www.autism.org/autismact2009. Cat

Well given that the goal posts are very probably going to be moving around in home ed in the not to distant future were it I about to be embarking on home ed at this time I would want to be doing it without a statement. But I would only say this if you are thinking about home education as a long term option. A statement is of no use at all to a home educator at the moment although the Badman Review has said that children should be able to keep the support that they had while they were in the system, which of course will mean that LAs keep their finger in your pie which the majority of us do not want. When we gave up on the system 11 years ago now with the eldest of my two sons and 7 years ago with the youngest we were not particularly interested in letting the LA off the hook or giving them the best run for their money that we could. What Iwe were interested in was our sons and them being the meat in the sandwich while we went ten rounds in a ring with our LA. Going ten round with the LA also meant that we had to let our youngest son fail in a placement to prove that it was the wrong placement for him. Frankly that did not make sense to us at all because our son was going be the one failing while we did battle with our LA. It was never about running out of steam for us it was about putting our energies into providing an education that was right for our sons and meeting their needs. I can honestly say that I have never once felt that we made the wrong decision. Home ed was the right choice for us. We have been home educating our youngest since he was 5 years old. He is 12 now and is doing really well and he is also happy. It is true that there is a great deal in the pipe line with the Lamb Inquiry due to report back any day now but even if Brian Lamb has a jewel studded magic wand it is going to take quite some time, perhaps even years for the changes to bed in and make a difference to the children already in the system. Home ed is not right for everyone and yes the state should be providing the right kind of education for every child. There are some parents who believe that educating their children at home does not mean that we failed in our battles with our LAs it means that we invested that energy in our children instead. I do not know if you are familiar with this group http://www.he-special.org.uk/content/joinhere.php but they have a mailing list which is a really good list to ask any questions that you have about home ed. There are some really knowledgeable parents on the list some of them home educating their sen children with statements and some like myself home educating them without them. Cat

You absolutely can not just keep your school at home between now and next September. If you wish to do this you will either have to deregister your son and then reregister him at a new school next September or you will have to have your son signed of school by a doctor to say that he is not able to attend school at the moment because of stress, anxiety or whatever. I doubt however that the school would accept a doctor’s note for this amount of time. Also if you deregister you will have to officially educate your son at home. That is not as difficult as you might imagine many of us home educate our autistic children and find it a very enjoyable and productive way to educate our children. Cat

Hi Mumble I checked this out with someone who knows about these things and have been told that SS should indeed have kept a record of their involvement with your family. It is worth trying to find out. I was also given a link to these people http://www.stah.org/autistic-spectrum-diso...m-disorder.html This is a private service but someone might be willing to speak to you. Again it is worth a try. <'> <'> <'> Cat

Sorry to jump in here but I would want to be sure that removing gluten and casein was playing it's part here before I embarked on the diet. It was not in my son' case. I know that it can be a BIG factor for some children but not for others and the fall out can be very hard going - been that way to. You can have a test done by Sunderland Uni to see if removing the gluten and casein is going to have any affect. It was Sunderland Uni who came up with the diet which is called the Sunderland Protocal. You can read all about it here http://www.espa-research.org.uk/onlineresearch.html - it might be worth reading before you jump in with both feet. The guy who actually came up with this Paul Shattock was the person who told me to think before diving head first in. Type Sunderland Protocol into a search engine and you will find the PDF from which the following quote is taken or pm me and I will forward it to you. This is a quote from the man himself Before you start - 1. Read and understand; 2. Obtain professional support; 3. Consider known conditions - Coeliac Disease and amino-acids; 4. Take a good, balanced,(GF/CF) vitamin and mineral supplement. Cat

Totally agree with Kazzen and Suze here. Although it is perfectly acceptable to make reasonable adjustments for anyone with a disability it is totally unacceptable to reinforce, tolerate or allow this kind of behaviour. There is no way at all that I would allow any of my children to be referred to as a nemesis. If this continues goodness only knows what being referred to as ‘her nemesis’ is going to do to your youngest daughter. I have had this and some. I have two autistic sons, both of whom I love dearly, the elder of the two never liked or got on with my youngest. It got to the point that I could not leave them alone in a room together. So I did not. As he got older my eldest’s levels of aggression really did get worse and I was really scared about what my eldest might do to his younger brother. I had never encouraged my eldest’s behaviour and I had always left him in no doubt that I was not happy about the way in which he was/treated his younger brother. I am aware that autistic children often do not like babies and younger children because they are noisy and unpredictable. I made allowances for this but no matter what my youngest did or said as he got older, his elder brother found it objectionable and I frankly found that objectionable. My youngest had his own bag of issues and I was not having those issues made worse by my eldest and it was no way to live. I really stood up to my eldest and left him in no doubt that his attitude towards his brother was not going to continue, to the point that the moment he started to say something that I knew was going to be insulting he was told to leave the room. I made it clear that if our youngest was annoying him that he had a room and he was to stay in it. OK so that meant that I was isolating him from the rest of the family but I was past caring about that. My eldest always felt that he was fully entitled to say or do what he wanted to his brother and that it was OK. It was not. I started sanctioning him and once we started on our zero tolerance regimes we stuck with it. We had some massive meltdowns but never backed down. I would certainly have a word with everyone who thinks that it is amusing to her your younger daughter referred to as a nemesis. My Mother used to make excuses for my eldest or laugh and say that he did not mean what he was saying about his brother. He did. I told my Mum that she either supported me of she stopped seeing my eldest until I had stamped his unwanted behaviour out. My Mum chose to support me and that really did help. I made a point of spending quality time with both of my sons but I did increase the amount of time I spent with my youngest and made it clear to him that I was not going to have him being treated in such a terrible way by his brother. Even though my youngest is autistic he was fully aware of what was happening in our house. He is 12 now and we often talk about the way things used to be with the emphasis on ‘used to be’. The good news is that we got there in the end but it did take a long time and we are talking years as opposed to months but we never took our foot off the pedal once we made the decision that things had to change. My eldest is 22 now and even admits to loving his younger brother now. He can still be domineering but not just with our youngest with all of us and I do accept that in part that is part of his character; however my son is fully aware that he is not the boss in this house and never will be. Cat

Nope I think it stinks too. Someone has asked for your son to be referred back to your son's old Pead and it wasn't you was it? There does appear to be a strong smell of fish wrapped around this. It would not be the first time that an LA have asked a medical professional to back track about a child. Although this there is a difference between what is happening to you and what happened to Sarah Spiller http://www.dailymail.co.uk/health/article-...ols-chiefs.html I would be asking questions about the re-referral were I you. I would hate to think that this Pead had been asked to look at your son again with a view to his diagnosis being removed. Adding together all of the other little niggles that you have about what is happening at the moment then I think that I would also be seeking some advice were I you. You could go to IPSEA but they are not always easy to get hold of. Or there is Network 81 and ACE. You could also have 30 mins free advice from a SEN specialist solicitor like Maxwell Gillott who specialise in SEN Education and Health issues. I will post a link but will understand if the mods remove it http://www.maxwellgillott.com/ Sometimes an LA just knowing that you have back up can often back track themselves. Cat

Thanks for posting this - very interesting indeed Cat

One of the issues is that there are so many things that we do not even know that we don't know about ASD if that makes sense. There does appear to be links between auto-immune disease and ASD. I know of some groups that have been set up because people believe that there is a link. For example there are groups for familes who have thyroid problems and ASD. We have both of those in our family. In fact my middle son has an underactive thyroid problems as well as AS and multiple allergies. Having been tested for MS myself - and the jury is still out on that one at the moment - I have been quite stunned by the amount of parents I have spoken to that have MS and ASD in the family. The auto-immune link to autism is something that has been discussed by the external reference group helping the DOH to produce the Autism Strategy for adults. There are more than a few autsitic adults do believe that there is a link between auto-immune disease and autism - and so do I. Cat

Well I did read the comments - all of them Clearly their is a huge lack of understanding about this condition which makes it all the more important that groups like Autism Speaks do not make videos about autism where it is portrayed in a demonic way. Cat

My son had two break down one when he was 11 and one when he was 13 he says he remembers very little about what happened during that time. He does however have flash backs and he hates them. I often wonder if his mind is blocking out probably one of the worst periods in his life. Cat