Elouise

Funding can be accessed through Connexions. If a child is registered disabled THAT is what helps more so than having a statement. Nathan's college needs to be 52/52 as he always loses what he learns in holidays. We are currently pushing for part payment between LSC; social services and health as nathan needs a multi-service approach they need to bicker out who is paying for what with Connexions acting as the ring leader pushing all three groups on his behalf. Connexions wil also help parents and schools prepare a suportive arguement as to why a SPECIFIED NAMED college is suitable and Connexions can NAME the colleg not just the provision. Thats better than a statemnet where they simply list the needs and not name the provison unless made to. You can begin to access Connexions from 14 years of age. I would in all honesty advise parents to begin to look at colleges from 14 years. Most require you to fill in and send the forms at least a year in advance as places are limited for special colleges. http://www.connexions.gov.uk/

Nathan does Kevin the autistic teenager to avengence. I cheat........when I get desperate I send him out with buckets of water and a housepipe to wash my car for me. He gets soaked every single time. I send Sam out to water the vegetables with the same purpose in mind as sam does not do wet but he is growing an experiment. When he comes in dripping I *cough* sympathise and suggest he takes his wet clothes off in a nice warm bath as thats easier than stripping off cold wet clothes. Then I can pinch his clothes and wash them too. One thing to nore though. Your son may be like mine and hate the smell of just about everything on the market even Lush. I use Simple or baby bath. When his skin is being riped to pieces by him and hurts his doctor prescribed a soothing bath emoillant. It only takes one bath where the soap stung a patch of sore skin to end up with a behaviour issue to deal with. If he is able to see if you can remember what happened between the last happy bath and the first refussed one or if this was a gradual tightening up on the idea of whats acceptable for Nat.

Why not gently ask him which he would prefer to do. Sam regards sports day as a way of torturing him if he has to join in the sports side of it. His infant school never made him take part. they always asked him but never forced him. Sam helped by keeping scores and using a stop watch which worked for him as he is so maths and science based. Perhaps he could help by setting up some of the props for his teacher if he wants to help but not take part in the actual race. Sams infant school was brilliant. The role model that staff gave the children was positive so that the kids with movement difficulties got roars of applause fromt heir class mates for finishing something they had found difficult even if they were last and way behind the rest. The winners still got medals but there was also awards for the most steadfast athelete (the one who did their best) effort and achievement were acknowledged. Keep talking with his teachers. It sounds as if you have found an inclusive school who are flexiable enough to make his day enjoyable rather than stressful and you could go along and support him and cheer him on and if it turns out he truly dislikes it you could take him home early .

As this school is so unwilling to differentiate his lessons and access to the circulum and seem so clueless on reducing his anxiety a chance to asses all his needs at a smaller Pupil Referral Unit might well be helpful long term. In Birmingham the PRU is run by James Bridley Schools. They take pupils who are in the process of being assesed for 4-6 weeks to help work out how their difficulties affect them and what teaching models help. This in turn allows the PRU to locate a more suitable school or push for necessary adjustments to be implemented by the refeering school. If thta school think this is a way to avoid their need to change they are incorrect. He will remain on that schools role whilst at the PRU UNTILL or unless he has a staement saying his needs are such he needs to be educated at and names another school. Nathan was assesed this way and given a full time permanant place at one of the James Bridley Schools as he needs are so specialised they cannot be meet anywhere other than at a specific autistic provision catering for intellectually bright but out there kids. There is nothing to stop you contacting the education authority by letter requesting he is assesed formally for his special educational needs. If you have not already done so contact IPSEA for complete clarification on what the school is trying to do against legalities and the code of good practise for ASD in mainstream schools.

Uggh make it a strong brandy...Nathan came home in Uber WANT NOW mode. Do I want to go droll at argos electrical goods with wet hair in this heat. No. Now All I need to crack is SS paying there share for Nathans 52 week placement at a special college and I will have truly earned my assertive with the statutory authority stripes. I tend to use that aspie persistance of mine to get my kids what they need.

Thank you Carole. I managed to get hold of his advocate from the VTS autism and communication disorders team after I has pointed out to Sam I would NOT make him go into school but we would go and find some people to help and listen. Sam agreed that its not that he does not want to go to school its just he cannot stand anymore change or missed science lessons or sports day or any one of a hundred petty things that would not rquire rocket science to tweak and make it bearable. I got a whole years worth of frustration in one major blowout last night! His VTS advocate told him he did not have to go in and he would sort out any comeback for him if he choose not to go in. Sam knows I would insist on school work at home because Sam WANTS to learn... desperatly. I took him into his sisters school and collered his old headteacher handed over the letter he had written and she made time from her hectic schedule to sit and listen to a VERY feed up little boy. She knows him so he listened whilst she helped him rehearse what he wants to say to his current headteacher as Sam gets wound up about 'appearing rude'. She has promised him if he keeps trying to go in for the next 20 days she will ensure a VERY special treat as soon as he starts year 4 as she WILL be his headteacher then and can do this for him. She has also promised him a gifted and talented science ciriculumm bespoke for him. He believed her. So do I. She has told him if he gets really stressed out not to run away but to come to her office in his old school and talk to her and she will try and help him because she knows at home he would get bored. Sam agreed. In exchgange I will give Sam chance to experiment on his lift mechanisms and choose science and history programmes of his choice and Nathan wil just have to kick the doors off and scream and sulk for a change. the VTS are talkiing with his supply teacher directly about managing his stress and keeping a very intelligent aspergers on track. His teacher comes back monday *YIPPEE* and after the VTS explained things yet again Sam is looking after the newly hatched chicks today to make sure they do not get too hot or thirsty. If His teacher is unable to get back on Monday he will be told friday so I have a chance to schedule work at home for him liasing with VTS But I have bruises on my shins and wrists from where he grabbed hold and kicked this morning and I have informed the education authority I am willing to take him to school but I cannot force him to go if he chooses NOT to but they also know I will ensure he gets an education whilst not attending school. Turns out my local education authority make greater allowences for the problems encountered by ASD children refussing to attend school than some other groups and him already having a full diaognosis and full statement and having been through a special school all help back my case if any education social workers who have not bothered reading his files turn up. I do not think this is applied by all education authorities. I did not know any of this late last night and have spent all morning sorting it out....now for a nice hot cup of tea and an hour to myself before Nathan falls through the front door from school.

Having had an absolutely awful week with Sam (supply teacher his teacher is off sick; the supply teacher is truly doing al he can but Sam and unexpected change do not go together very well) culminating in a complete aspergers meltdown tonight. Sam has written a resignation from school after the most awful screaming howling and distressed state I have seen in him in a VERY long time. He is absolutely refussing to go to school. He is 8. His advocate knows he is at this stage but I could not call them. To say communication has broken down with the current SENCO would be polite. I could strangle her for how she has asked him questins that she knows he will only automatically say yes to then written me a a piece in his home school diary.....funny have not seen that for a few months or an IEP......if she knows about ASD then I am the tooth fairy. Long and short is this. How do you stand with current legislation if your willing to take your child to school but they are refussing to get out the house...the car...remain like a limpit to any part of your body they can hang on to and make that funny high pitched whine from pure 100% anxiety? If it was not for the new SENCO and his old headteacher taking over form Sept 2005 believe me I would be withdrawing him and home educating but I still have four weeks of this left to go and I am looking at the state he is in and asking myself if its worth the inevitable run in with the education social workers if I let him come home with me.

Differentiate the circuluum! Make english accesable by teaching in a way that can be accessed by those who are literal and offer a wide range of differant books in differant subjects styles...and type faces. Offer books in PDF format on handheld readers for those who dislike paper. LISTEN to the kids. Sam just fell for the 'Your happy aren't you Sam?' from his stupid SENCO who KNOWS he will ALWAYS answer yes to a question he has not understood. Let them work at the level they are at. In Sams case that means two levels below his peers in English lit and some aspects of English and about four years ahead in science and nearly the same in maths. STOP making them do team sports when they say 'NO'. A nice quite safe place to go to that they feel ALLOWED to use when they get overwelmed. Consider letting them do part time schooling for subjects of real interest and let them plod away at home on english where kids like Sam feel safe to make mistakes. Stop and think what colour is that classroom in is it one that kid finds awful. My lot are terrible in bright red spectrum colours but chill out in blue; do you have lots of distracting 'things' that make the kid obsess like that awful light or that huming heater or the seat and desk that are just not quite right for the working height. Help them organise. Not in your face but coping stratergies that are made for each child. Let them choose what they want for school dinners on a tick sheet for the entire week ...and MAKE sure its held nback for them. Sam tried to choose and found that what he wanted has been eaten by other kids. Meltdown. Have a nice safe anger room or something like a zoom room that can be quickly adapted to let loose in when frustration builds with a punch bag and big cushons to SCREAM in. Think about allowing them to use the disabled loo if they cannot face using the toilets at break.....that can save a LOT of frustration. Ever heard how noisy and echoey those rooms can be at break time. I could say a lot more (you can tell that today has NOT been a good day and that if Sam refuses to go to school tomorrow I may well be agreeing with him after I call his advocate. He has written a resignation letter from school and only just come from his hidey hole where he has spent the past three hours raging and crying and screaming about being bored and not listened to by THEM. Oh dear) Birmingham City Council VTS autism and communication difficulties support in mainstream team have some excellant teaching DVDs.

Sam had this block of tests done by his consultant community peadiatrician and a couple of others by the consultant psychiatrist. Because fragile X is a genetic and because I had a block of very weird children from a very weird family that needed to be ruled out as a possibility so both boys where tested to be 100% sure when Sam was 2 Nathan was 9. They also decied to rule out a few other very rare odd disorders that present behaviour similar to ASD but might be progressive. It was the good old family ASD though they did find a very high level of IgE in Sams blood that is typical for children who are very atopic to certain protiens. If your unsure what a test is for or need to ask again later do so. If you cannot get a response by phoning try writing as a phone call may be ignored but a letter is less likely to be ignored.

My biggest problem has been fielding such delights as. 'Mum can WE build a delta wave in the kitchen and see how far it can really reach? Would it kill ALL the insects too?' 'Mum how strong are the daleks outer casing to prevent them exploding into space? Why did not that lady explode straight away was there a force field....how can I make a force field like the doctors?' On the regeneration Sam was 'Cool! Look mum that would solve a lot of burns people having pain...MUM....can we build a system to cause regeneration for people who get badly hurt too can I do THAT at university?' And on and on till my head hurt. Just for once I wish he could watch something like this and enjoy it as a story not a way to recreate it at home.

Nathan has a fulltime special school place AND his own LSA. Whilst in mainstream he had a fulltime LSA for the whole six hours per day he was there. At the moment we are filling all the forms in for a 52 week residential college as his post16 provison meeting we all said he NEEDED that and tough luck social services for 'forgetting' to attend. Connexions are after them. *sniggers*. Sam is in mainstream with 18 hours a week support but I want them to swop six hours of that for a computer for him. Gifted fasttrack teaching for science and pure maths and discussing a four day week when the new head comes into post who knows that boy oh so well. She was the head who agreed to let him slowly intergrate in from an autistic special school and has always fought in his corner to get the best for him and out of him. Jo is on the gifted and talented register as of this week so now gets fast-track and invites to conferances from her school that arrange to take her. Annie. Oh dear. One under needing a statement. Has outside literacy help and a weekly session with the finger and thumbs (dyspraxia) group that supports the dyspraxic/ severly dyslexic kids in her school to organise, co-ordinate and sequence through games and activities. This is run by a specially trained special needs teacher. Next term we will be looking to see if she has made any sign of progress .....or not. Poor kid she tries harder than the others and makes no progress. Hopefully when Nathan is in a college I can find her a specialist out of school dyslexic teacher to pick ideas with. Yes I have had to fight for my kids to have what they have and its worth sticking at it. IPSEA have always been most helpful.

Looks at children, looks at self and immeadiate family....looks at wider family. In our case...Herditry...the genes got out and its those who are 'normal' who are the odd ones out in our family. Any who go on to have a diaognosis of autism are obvious from birth.

Nathans mainstream school placement broke down completely. He refussed to go in and became so distressed he ended up needing inpatient care in the regional adolescent unit. He was offered a place through the local group of Hospital Schools in our region. They offer a mix of options for children to try and meet their needs In hospital education for those in hospital either on wards, classrooms or in specialised hospitals seperate schools next to the hospital. Whilst in hospital Nat attended the hospital school. He is now at one of their community hospital school centres that operate like other special schools but with more support and appraciation for very anxious pupils. Nathan attends fulltime as he likes routine. Some chidlren attend one day a week and have home tuition on top. Some have purely home tuition and attend for workshops or other special events. Its proved more flexiable and accepting and enabling than anything his very good mainstream school could do. Nathan has been there for a couple of years and is now applying to special collages for an arts and crafts apprenticeship. If you have the offer of a place talk to the centre or school about what you and your son feel he needs to begin to relax and learn.

Myself and my sister did though some years where better when we had teachers who could work with our 'littleways' and awful when we had teachers who wanted to make us fit their idea of how we should think and act and behave. That always made us worse. Sixth form was great I finally got to study what I wanted instead of all the silly bits others insisted. My sister tried college instead of sixth form. The lack of structure was a disaster and she failed after six months and found a job with a LOT of structure which she has thrived in and worked her way up in as it allows her to use her high IQ and photographic memory in a positive way. My school quickly worked out I was a menace if left with no purpose and a very understanding teacher gave me access to the science labs to 'help set things up' run extra class work experiments and help run a biology club. Before that I HATED breaks and lunch as I never knew what to do and everyone else did. The attittude of the school and the tecahers makes a big differance for able ASDs. My eldest daughter thrives in secondary with GCSE work two years early for her 'special interests' Nathan failed because he could not cope with the noise and is autistic (very) Sam has a potential to survive though like his sister before him hates juniors as he is bored and is champing at the bit to gain access to the tech and science labs he has seen at his sisters school. I have to also admit we have been lucky with schools and the fact most of us except my sister and Nathan are 'outgoing but very odd'.

Hi, My sister is highfunctioning ASD and still debating if she should have it made an 'official label' or not. She is also gifted to the point genius and insanity can seesaw mostly she copes but sometimes needs a hand. After ten years living on her own she now has a live in boyfriend who can cope with her 'little' ways. I am married and have been for 16 years to a longsuffering hubby who puts up with me (Aspie to the hilt but like my sister i wonder if a formal diaognosis on top of the 'we can give you the diaognosis if you would like' offer from the team that work with our lads) and my ways coupled with our odd four children. Nathan profoundly autistic and dyspraxic Joanne (Adhd and some ASD but did not want the official label preferring to dress goth and call herself one of the geeks) Sam aspergers ADHD finemotor dyspraxia, anaphylaxis and an intellect that scares even members of our family Annie Absolutely no ASD I can see though some beg to differ and a level of dyslexia that takes some getting used to as much as her imaginative games. I did try the local autistic society but found the constant 'are you STILL married' questions worrying. I think they found my 'I know where my kids get it from' worrying too...with hindsight. Our whole family on both sides has many strands of ASD running through one side and ADHD the other. having had a not fun three years in which Nathans school placement broke down and he ended up so anxious and depressed he needed hospitalisation after attempting and doing a good job of cutting his wrists with a school book I am only just now with a computer getting chance to read again. Hallo.

Sam was prescribed melatonin from 2. He was sleeping for patchy half hours throughout the day and barely for three hours in any 24. [Hence me paying cheerfully for him to be in a private special needs nursery. I would have gone insane from exhaustion without that] The melatonin helped by over time pulling the few hours he does sleep into one block but it was not instant and increasing the dose did not make him sleep longer. It helped him to learn to drift into sleep. Ritalin and ConcertaXL where both tried but it amplified the paranoid side of his ASD and stopped Sam sleeping. Eek. Yes it DID improve the ADHD but it made the ASD so in your face it prevented Sam from learning. Sam does not settle down until 9pm. He is allowed to read his science books for an hour or play with his train sets as long as he stays in his room reasonably quietly. He can tell the time and knows that 10 pm is lie in bed time and look at pretty lights . For Sam soft diffusing lights playing on his ceiling help him calm down as does his hand held soft diffusing light (Thank you Au Natural!) Toys for the handicapped make ones suitable for children who destroy and dismantle everything but they cost one heck of a lot more than Sams. Having a gradual slow down ritual helps him and us and he has a pecs symbol with times written by his door to double check if he gets anxious. As a family we are very lucky, I do the night shift with Sam and Nathan until they both discover sleep at 12 ish then my husband does the early morning as he unlike me can get up at 4am. My eldest daughter does a 'keep an eye on them' between 7-9am at the weekends in exchange for music lessons and other things she would like to do that she knows we would have to make an extra effort to let her do. we go back to bed .....to sleep! Nothing makes Sam sleep more. All we could do when he was small was Sam proof the house to the best of our abilities so that every room and exit downstairs was locked and every window was locked upstairs. We had a hyper sensitive circuit breaker fixed and EVERY room has a smoke alarm and in Sams room is a carbon monoxide alarm just in case he has a science idea whilst we are asleep. These days with his huge train set he stays in his room until 4am but you can still hear 'woowoooo' softly echoing through the night.

I tried Nathan on the full gluten and dairy free diet but it made absolutely no differance whatsoever. Nathan was born showing all the classical signs of infantile autism and hypotonic to boot. Its how he was put together and nothing other than TEACHH and cognitive behaviour approaches has helped. Sam was an screaming 24/7 monster whose skin began to peel off. He had an allergy rather than intolerance to casein and I had to follow a glactoseamic diet for him. Now at nearly 9 he is very intolerant of milk and dislikes it. I wish taking him off gluten as well would slow down the hyperactivity but like his brother it made no differance. Yes CF/GF is worth a try and if a child is affected by these proteins then yes taking them out of their diet makes a differance and makes life more fun. Its not worth continuing if the diet makes not a scrap of differance for a child. As my whole family is Aspie with the odd autistic thrown in to add spice I suspect in my families case we are looking at mainly a genetic reason.

I was ambling through the web trying to find some information to help my youngest son and found this forum and this thread. Hence me joining. I apologise if this post is a little disjointed. I have my teens back at school and the younger ones at home and not enough sleep over the past week. My youngest son has a diagnosis of Aspergers Syndrome, ADHD, fine motor dyspraxia. That was always going to be a fun combination but over the past year I have watched a level of frustration build up that has become scary. Sam has a full statement. His difficulties were so obvious they were picked up by 18 months [he has an elder VERY autistic but bright brother] I used his DLA to pay for a part time place in a private special nursery for two years until he ha da statement and he then spent a year in an autistic specific school nursery before being unleashed on a very accommodating inclusive main stream school. His behaviour was explosive and non stop and his word finding difficulties required help but with TEACHH he learnt there were things called adults and he was a thing called a child who would become an adult. Bens year 2 SATS were unexpected. Thanks to the problems his ADHD brings I would have been happy with 'working towards level 1'. His English is level 2 thanks to suspect dyslexia but his maths had shot up from below level 1 to level 2a in a year and his science was awarded a 3 but his answers where far higher than expected from a 7 year old and his teacher was of the opinion that his knowledge went far in excess of the questions posed by the papers. Orally his ability to explain and comprehend as long as it steers clear of emotions feelings and pitfalls like talking animals is higher than most in his class. He struggles to record his work. A year on. Sam is displaying increasingly difficult behaviour to his teacher who is struggling to keep him busy. If the aspie side is not occupied out comes all the ADHD and he goes to find a class being taught a more interesting lesson. She has been using extra hard maths sheets as a reward for staying and attempting English we are looking at having to add a 'gifted' in science to his statement. I had considered he had aptitude for sciences and mechanics. Thanks to dealing with his elder brother 24/7 I had missed his ability to not only hold on to all the 'facts' but his very unusual problem solving ad reasoning abilities. For now he is working on building a theoretical time machine and is chasing the concept of finding a way to ride a bubble in space to go faster than light and ways it could be achieved without the universe imploding. This seriously went over my ability to keep up. Then he switched into a debate on evolution with a detour into how steam engines could be improved to be more efficient and why his teacher and school science was idiotic and he was not going to do'babyscience' anymore in between playing Spyro the Dragon and twiddling blutac. He wants to go to secondary school now as they have real laboratories to use. Sam has use of the specialist support team for autism in mainstream available locally (old VTS) his worker is liasing with his head teacher, his educational psychologist and others and we will be scheduling an early annual review to go through his entire statement that was made when he was 3 and overhaul it to include specific support in recording ; this should allow him to have a computer .They will also be looking at compiling a SULP (social use of language group) group made up of the other ASD kids in the school as poor Sam took it into his head he was the only one of his species in the school which was why he had taken to insisting he be called Doctor and hiding in a box. It has taken a few weeks to work out just what was wrong. The boy is working so far ahead of his peers in science he is permanently bored silly. His ability with pure maths is not being stretched but because of the problems with English this had been missed out. For now he is doing some science in the year above as a reward for good behaviours but hopefully next year with the amendments to his statement and his very accommodating headteacher there will be advanced science available along with the advanced English and maths for gifted and talented children. For Sam this means working on similar subjects to the rest of the class but with much higher set achievement goals and opportunity to do more advanced work with other 'gifted in science in his year children. There is another gifted child in his class (no ASD) and they tend to pair up easily for maths and science projects as they both take their work seriously and want good results. I would far rather have Sam with his age peers as socially he is gauche in the extreme and have the support he needs to record and the opportunity to sail high above in subjects he is interested and good at. School is hard work for him as he his asked to study subjects he does not like or see the point of. My sons stress and anxiety levels on 'pretending' to be like other kids means I get payback as soon as he comes home. He has been asking to be home educationed but I can not consider doing that until I have his older brother in his 52 week college placement. His school has consistently done their best and pulled in extra support for him hopefully over the next few weeks they will be doing so yet again. If I find anything out regarding support for gifted ASD kids in junior school I will let you know. Sam loves BAYS (British Association for Young Scientists) and for others dealing with Einstein wannabes this is a good outlet for interests and abilities. http://www.the-ba.net/the-ba/ResourcesforLearning/ *sighs and just when I thought I had him settled down enough to concentrate on his brothers post 16 placement, sort out how bad his younger sisters dyslexia truly is and try and persuade my eldest daughter to think a bit before she tells the teachers what she thinks.(And yes she can have a diagnosis if she wants but she does not want it and prefers to go round dressed as a Goth and tell everyone if they think that she is weird they should meet the rest of her family.*