fairynormal

Well he's still on Risperidone (0.5mg at night) and it's made a huge difference to his life. He sleeps brilliantly and his anxiety is much less severe. He's come on in leaps and bounds in the last couple of months and is a lot more settled and less agitated. We're due to go and see a specialist in Nottingham at the beginning of September who is an expert on meds, as his docs want to start him on Ritalin or similar as his ADHD is pretty manic. They are also looking at giving him a second smaller dose of Risperidone in a morning to help him during the day. I am really pleased with how it's worked for him as apart from the weight gain and constant hunger, it's all positive

I haven't posted on here for a while but just wanted to share the fantastic news that Isaac has a new school place starting in September. After being out of school since January, this is just fantastic! The school is an LEA special school for children with ASD. We went today to meet his class which consists of 9 children and 4 staff. He was very nervous and shut himself in a cupboard and ran off a few times but settled ok in the end. We've had tears tonight as he is still nervous but was crying because he can't believe how lovely the school is compared to his old one. They weren't at all phased by his behaviour and were really positive all the time. I could jump for joy tonight as I feel so happy. The school is truely wonderful and the staff and kids are welcoming and friendly to everyone. Here's to a brighter future!!

Our SS out of hours team came up with some amazing advice for me. They asked how they could help when they called me and I jokingly said they could send someone round at 3am so I could have some sleep! She polietly explianed that they couldn't do that then suggested that I phoned the on call GP service and ask for them to give him a sleeping tablet!! What planet are these people on?

Warning!!! This post contains a rant. Feel free to ignore!! Today was just awful. I had to take DS supermarket shopping this morning, and even though I know he hates it, I had no option but to take him with me. He shouted and ran wild with the trolly before crying because it was too loud/hot/bright etc. He refused to wear his ear plugs but I did manage to get some rescue remedy down him and he did calm down a little. After lunch he was moaning he was bored so we popped on the tram into town to pick up a couple of things. We only went in 2 shops. Whilst in Holland and Barratts, he lost sight of me for a second as he'd gone on ahead and I couldn't get through. He panicked and shoved hard ast a woman who started having a real go at him, calling him rude and nasty. I asked he what was wrong and explained that he was Autistic and he didn't mean to be rude but was panicking. She was lovely and apologised (now that doesn't happen every day!) but DS lost it big time. Before I knew what he was doing, he had turned round, punched me really hard on the arm and started shouting that I was a liar and started swearing really loud. Next minute, he hit me full force in my face and almost knocked me over. My face really hurt and it still does now. I felt so humiliated as the whole shop was stood staring at us whilst he kept on shouting and swearing. I manged to hold it together whilst crying and finished my shopping whilst totally ignoring him. I feel so dissapointed. Since he has been on Risperidone, he had calmed down so much. The violence and agitation had stopped and I had my lovely boy back again. Over the last week it seems to be building back up again. He has kicked me really hard, deliberately smashed a plate, nipped his sister and made her arms bleed and been really defiant, argumentative and agitated. I wonder if he needs his dose upping a bit as he is only on 0.5mg at bed time so am going to speak to his doc. I feel really down today. After a few good weeks I was really begining to think we had turned a corner but now I feel we are getting back to square one again. Sorry to moan but it's better than crying! Thanks Sam x

A quick reminder of our situation. About a 2 months ago I begged SS for some help and my sons medical team also made a refferal for us and filled in 'Child in need forms'. To cut a long story short, SS decided we didn't fit the criteria for Children and Families as my son isn't abused, neglected etc. We didn't fit the criteria for The Childrens' Disability Team either as by their criteria, he isn't classed as disabled! I put in a stage 1 complaint, contacted my local MP and Councillors and threatened to go to the media and the Disability Rights Commission. They still insisted that we didn't fit and even sent round a worker from the CDT just to 'pacify' me and show they had been out to assess us. They said they had dealt with my stage 1 complaint and that was that. I wasn't happy, neither was my MP who contacted the Exec Director of CHildrens Services for our city who was incensed!! Last friday I received a phone call from someone saying they were the social worker allocated our case by the Dual Diagnosis Team of CDT. She is coming to do an assesment on 5th April!! I was gobsmacked!! I then called the service manager of CDT and spoke to her PA to ask if the criteria had suddenly and miraculously changed?! She said the service manager said we still didn't fit the criteria but realised that it was in everyone's best interests to resolve the matter as quickly as possible so had allocated us a worker from the CDT!!! Yippeeeeeeeeeeeeeee!!!!! Looks like a small victory for us and one in the eye for them. It's awful that parents have to go to such extreme lengths to get the help they need but I am so glad I did. I would encourage anyone else in the same situation to do the same and not back down.

Thanks again everyone for your input ....... it's much apreciated. After thinking it through and chatting to my sons Dcotors etc, we are all in agreement that this school, as amazing as it is, is not the right place for him to go to. I think he would benefit so much from the low stim environment and the experteese of the staff but not at the expense of being a happy, sociable little boy. I spoke to the case officer at the LEA today and she was in agreement too. She thinks he would be best placed in one of the local LEA special schools who deal with Autism and so do his docs. I have visited the school and was very impressed. He already has a good friendship with a boy who goes there so that is another plus point. The only downside is that it is full to capacity until September and the head really wasn't keen on taking him anyway. The case officer suggested him going back to the mainstream school on a part time basis with increased support. I am not adverse to this either. If he went back for mornings only he wouldn't need to be with his class teacher (who is intollerant, flippant and uncaring) as he would be in maths and literacy sets. If the LEA were prepared to pay �68000 a year to send him to the NAS school then surely they can't complain at funding a properly qualified support worker for 15 hours a week!!! I spoke to the head at the mainstream school this afternon who obviously was NOT impressed at the thought of him coming back. She had alsorts of reasons why he shouldn't be there, most of which were pretty silly and grasping at straws reasons really. Everyone is going to get together and see what is best ASAP. Thanks again. It's so brilliant to be able to talk things through with other knowledgable parents who can offer an impartial perspective but one where they do understand the issues. <'> <'> <'> <'> <'>

I have a relative who has long term mental illness an lives in a supported living scheme. He doesn't work and recieves benfits plus monthly DLA. As far as I am aware, nothing is taken off him as Housing benefit covers his rent costs. It does seem a bit unfair to be expected to live on �20 a week. Can Citizens Advice offer some help? I hope you get it sorted.

I had a lovely day. My daughter got me bath bombs and some lovely wooden roses plus a card. My son bought me a scented candle and a bath bomb plus a card. He made me breakfast of two buttered scones and a hazlenut yoghurt! It was delicious. Mid morning he got himself on Radio 1 on Vernon Kay's show!! He had called them up yesterday to ask if he could wish me happy mothers day. They called him back today and he had a good old chat with Vernon. I also had the pleasure of talking to him He was so excited and was grinning from ear to ear when Vernon called him a 'legend!!' I was so proud of him as he was so nervous and tends to gabble really fast and be hard to understand but he did brilliantly. My son the superstar!!!

Thanks everyone. My son is 10 at the end of the month and is in Y5. Things are complicated because he just isn't AS. He has Tourette's, Severe OCD and anxiety, ADHD, sensory integration difficulties and motor learning difficulties. He is very paranoid and can be verbally and physically very agressive. We have basically no local schools that can cater for his complexities. The special schools are mainly for children with severe physical or learning difficulties and the ones who do take AS kids are all full and say they couldn't have him anyway because of his other problems. They have to look at how his behaviour would effect the other kids too. Most schools run a mile when they hear the phrases 'mental health' and 'agression'. In his mainstream placement he had a statement of just 9 hours (standard for speech and communication) which was advertised twice with no applicants. No-one wants to work for just 9 hours a week do they and anyone who is qualified to work with someone like my son is already doing so in the special schools etc. The job ended up going to a part time TA who was really lovely but had no idea how to work with him. As far as I am aware the only other relatively local school who can cater for my son is the one I visted on Thursday. It is run by The National Autistic Society so isn't an LEA school. There doesn't seem to be anything else at all round here. It gets even worse at senior level! Mainstream has plodded along okish up until now but he does need to be in an environment with staff who actually understand about AS, TS, OCD etc. There are times that he just cannot cope in the classroom, he gets so anxious and fidgets and makes noises. He constantly turns round because his paranoia makes he feel he is being watched and followed all the time. He won't even go to the toilet by himself at school as he is convinced that someone will be waiting to get him in the toilets. He can never sit still or be quiet, laughs innapropriately and makes innapropriate comments all the time. The teachers just can't handle this and have such little understanding of him. He deserves so much better but where? I suppose I should wait for feedback from the school and the LEA and take it from there really. His case is sort of high profile within the local council as our local MP and the Chief exec director of childrens services are involved in my complaint against social services and have taken it upon themselves to make sure he gets an appropriate school place too. They are concerned that he has been out of school for 2 months now and are kicking up a big fuss with the LEA. My head is in a spin as all I want is him to go somewhere where he will be understood, encouraged and most of all happy.

My son has been out of school for 2 months now. (long story!) About 3 or 4 weeks ago the SEN panel met and came up with a list of 4 schools they felt were suitable for his needs which are very complex. 2 were LEA special schools which are both full to capacity until September with huge waiting lists. I have visited one and didn't think it was sutable and the other school, as well as being full hasn't got the staff capacity to have my son there. The 3rd is a local LEA Junior school with an integrated resource. They say they cannot have him there because of his complex needs and again because of staffing levels. I went to visit the last school on Thursday which is an out of town N.A.S school. It is the most amazing place I have ever seen with wonderful staff and out of this world facilities. The deputy head said they felt they could only take him in their inclusion unit but that is already oversubscribed with no places coming up at all. They are going to re-look at his case and talk to his docs as my son is so different now he has been on Risperidone for a couple of months. He is like a different child and so eager to get back to school. The only thing is that I have a real dilema should he be offered a place. I will try to word this so not to cause offence to anyone as I sincerely don't mean it that way. From looking round the school, it seems that a lot of the pupils are on the more severe end of the spectrum. Some have very poor or no language skills, lots walk round wearing ear muffs/headphones to block out any noise etc. My son has Aspergers but is the complete opposite almost. He is very very lively, talks for England although more often than not, very innapropriately because of his communication issues and is very sociable. Although he is slightly behind academically, this is mainly because of his motor skills (he can't write properly) he doesn't have any major learning disabilities or anything along those lines. My worry is twofold really. One part is that we live a fair distance from the school so he is unlikely to make any friends who he will see socially out of school as the pupils come from all over to attend. Secondly, will he actually make friends? His potential key stage has just 5 pupils so there aren't many children to start with. What if these children have very poor or no language skills? The opportunities for him to build friendships will be severely limited. I am not saying that children with severe autism cannot build friendships or are somehow inferior to my son ( this really isn't coming across as I mean it!) what I am trying to say is that I want him to go to a school that can cater for his very complex needs but where he can make friends who are on his level so socially he gets something out of it too. He is a great kid who chats to anyone and everyone regardless of what they are like. He made friends with a much older (18/19) boy on the park last week who had learning disabilities and severe langauge problems. They were laughing and giggling and racing on the swings together which was fantastic to watch. As it appears that none of our local schools will take him (mainly because of his mental health problems and his aggression) so this school feels like our last chance. I do think he would gain so much from being there but don't want that to come with a downside. I hope I havn't offended anyone with this post as it really wasn't my intention. Thanks Sam x

Today whilst watching Child in a million on TV with my son, ther was a little boy who said his wish was to have a proper friend who didn't laugh at him. Isaac turned to me and said, "I'd be his friend. Just because he has something the matter with him he's still nice. I mean, I have ASPERGERS and I'm still ok!" I could have fallen off the sofa in shock and joy but didn't comment at all to him as I didn't want to make a big deal of it. Up till now, he has gone ballistic if anyone mentions Aspergers of Autism and has been adamant that he didn't have either and we were all liars. I think what has changed this was that we went to a local playcentre on Monday night. They have started running a night just for kids with special needs. We popped along and knew all of the kids there and he had a fab time. He played a lot with another boy with AS who is the same age and they get on really well. He said they were discussing how they are very alike and "have the same thing". He has never spoken like this with anyone as he was in total denial. I have never pushed it but he seems to have accepted it in his own way in his own time. I feel so proud of him and feel we have turned a corner. Just wanted to share that with you as it made me so happy <'>

Sorry you had such a bad day. My son sounds very similar to T and is now also on risperidone. It has been a life saver! He now sleeps and is so much calmer and happier. He is like a different child. On his behaviour chart at home today he got all stars (stars = good spots = bad) and even got a special gold star as he had been so good this morning. He's only on 0.5mg at night but it's been nothing short of a miracle to us. I hope the meds have a similar effect for T an dthings start to be a bit calmer. Hugs Sam xxx

Good on ya Bambi! I hope the article is a favourable one and that some good come sof it, even if it's just meeting others in the same position as you. Go get 'em! Sam x

Good luck to you Bambi. I am currently wrangling with SS too. My son attacks me physically with knives, scissors etc and constantly says he wants to kill himself. But ...... We don't fit the criteria for any department as my son with a long list of disnosis isn't classed as disabled by them! I put in a stage 1 compliant which I copied to my local MP, all my local councillors and the heads of departments saying I was going to contact the Disability Rights Commission and the media. My MP has taken up the case as has the Chief exec of Childrens Services. After the MP contacted them and they refused to give her any information, they sent someone round from the CDT who still says we don't qualify for help. They feel they have dealt with my stage 1 complaint so I am now in the process of writing my stage 2 complaint letter and back up evidence. SS are appalling. Even My MP is outraged by their attitude. She has even gone as far as saying that if she finds their criteria are set too strictly, she will challenge it in Parliament! I wish you every luck in this. Make sure you make notes of everyone's names, dates and what's said. Stick to your guns, you owe it to yourself and your family <'> <'>

My son lines things up too. He likes the variety packs of cereal and lines those up in a certain order. He lines other foodstuffs up in accordance to their sell by dates. He loses it big time if we move or disturbs his lining up. He also lines things up and orders stuff in shops. He spend half his time on our weekly shop lining up the shelves, particularly the fruit for some reason! He also does the canned foods, filling in any gaps and making sure the labels all face the same way! He also lines up clothes in shops too!! Me thinks he's destined for a (happy) life as a shelf stacker!!