Elouise

Darn it, Nathans psychiatrist and sppech therapist sorted them out for him, I have a nasty feeling it may have been a pilot scheme for this year. When we see them next i wil ask if this is going to become more available as Sams school think its going to be the only way to get Sam to sit for English in year 6. *watch this space*

Nathan was given a place at 4 whilst his statement was finalised, but they have moved the goalposts in the last 12 years so I do not know if this still applies.

Nathan was disapplied for SATS at this age...no one wanted to tell him he had to sit them and be on the recieving end of a complete meltdown complete with doors ripped off and thrown. Funnily enough THAT little incident made his temp. special school placement rather permanant. SATs only matter to the government IMHO. Trying to build up a kids confidence to sit Basic and GCSE level exams matters more and you have 2-3 years to support him on that. I would not worry about SATs. I have also promised to keep Sam home from ANY SATS tests he does NOT want to tackle as I have to live with the horror...(mainstream school VERY inclusive, they stagger his SATS and give him lots of breaks in English and make him STOP demanding the next level up science papers) Yes you CAN get leeway for an ASD kid and its also worth asking for the ASD specific english papers to be used too. Nathan is allowed to use those.

We will be sponsered by the military... my husband is in the Air Force here in the states and we have our own form of insurance here that covers just about anything, but I dont know how it will work over there. I guess I am probably just going to have to wait and see. Thanks again. First off get your husband (the insurance is made out under his name and for his dependants I THINK) to contact your countries air force personal support services. Find out if the bases kids attend the local UK schools or if there is a school provided on the base itself. If your a non UK citizen and need to use spcecialist schools or your son needs specialised support in school this may well need to be paid for by the military. Its NOT cheap providing specialist education in the UK if you are not a UK citizen. This is something to enquire about before you arrive here. It IS possible to homeschool in the UK through education otherwise and there are resources available for parents who homeschool special needs if you struggle to find suitable schooling. You can find details of this in the education folder on this forum. Check if the US disability benefits apply to your son whilst your husband serves outside of the US with his family. You will NOT be entitles to the UK ones so find out if you are for the US ones. Contact NAS for details of whats available locally to where you will be so you can give details to whoever deals with familiy difficulties on the base so they can liase on your behalf. Your medical stuff should be covered by the bases doctors BUT you may also need to have details of specilaists in the Uk that can be bought in i.e. speech therapists, child psychologists, educational psychologists and so on. Voluntary support groups welcome anyone so its worth contacting those; it is accessing statutory services in the Uk that will be like re-inventing the wheel! Mind you if you live in the Uk as a British citizen accessing stat services can be like reinventing the wheel too.

Okay I have a few personnal gripes with NAS but it might be a god idea to contact them and get an overview of whats available Please also read the Governments information for alien residents in the UK to ensure you have the right health insurance to cover your son in the UK. You will NOT fall under the UK NHS services unless you are a British National. Is this being sponsered by a company/military secondment for a few years or are you seeking British Citizenship? The former you would have extremely limited access to UK services the latter would give you some rights.

Just going to add that all firservice rescue vehicles carry a special tool to rip through harnesses as after a RTA its often not possible to release safety catches that have ceased on ordinary car seat belts, it goes along with the rest of the rescue kit they carry to release people from cars. Having a sticker warning rescuers that the person they are rescuing is autistic and may NOT be pleased to see yet someone else scary looking after the fright of an accident is a darn good idea though. Nathan BIT the nice ambulance men after he walked through a sheet of glass because they needed to look at what he had done and he did not feel co-operative. Autism West Midlands does a special 'alert card' for emergency services. Might be worth asking NAS or local groups if they have a similar alert card too.

PS. http://www.safetyfirstsales.com/child_special.html And you can claim back the VAT if your child is registered disabled. The Crelling Hyperactive harness is a challenge even for the houdinis.

Nathan , having caused me to crash my car when he escaped from his carseat to play 'peekabo' on me at 60mph quickly had the seat before this one. Its large it takes up a seat and a half. Thats fine if you only have two kids to put in the back of a car but a pain for more than two. It can fit in the front of the car but again you need to ensure fun things like the gear lever, handbrake and so on are not within grab distance. Nathan did my blasted head in in the car. It was the only place he came to life and he was a complete deranged muppet, it was like travelling with a cross between a baby gorilla and a red setter. This company where BRILLIANT, they came and measured my car advised on seats and fitted a special 'hyperactive' harness to stop Nathan escaping in the seat itself. Britax just sent someone over who wanted to sell me the seat and could not advise if it was okay for my car. Mercia Safety Centre Ltd Warboro Farm Henley Road Hampton-On-The-Hill Warwick CV35 8QX Warwickshire Tel: 01926 411388 OR the other place offering specialised advice on fitting specialist seats. In-Car Safety Centre Unit 5, The Auto Centre, Stacey Bushes, Milton Keynes. MK12 6HS Tel: (01908) 220909 Sam *aka* hyperactive buddle of fun had a Concord Trimax seat instead. Lighter cheaper and easier to fit into cars. Annie has the trimax now and sam has the Concord Prolift. Nathan is now a huge adult who drools away in the front seat still being a red setter but at least he has stopped chasing after cars like ferraris the minute I break at the red lights. Securon make webbed harnesses that can be bolted into the car if a seat is unwise or too small. You could also contact RoSPA for info on who makes seats suitable for special needs; it is not just Britax. http://www.childcarseats.org.uk/links/manufacturers.htm Hope that helps as I have been there and had to chase info from scratch myself.

I have a Nathan (16) aka Kevin the autistic teenager. Sorry but you still have to parent adolescence on top of ASD. I also have a Sam (almost 10) who is rigid thinking personified. Reading your post it sounds like you have a young Goth on your hands, he seems to have the mindset. My home appears to be filled with ASD and off beat young Goths who settle here to watch films nick my CDs and eat everything in the fridge. Nathan has been mugged so often he now dislikes going out on his own as he cannot tell who is a friend and who simply wants to nick his stuff off him. The sleep pattern is typical teenage boy. Nathan is bouncy at midnight and a complete immoveable slug in the morning. This is the boy who would choose to sleep around the clock if I let him before puberty hit. If he is managing to vent his frustration on things rather than people well good for him. I have not a door or doorframe that has not had to be hammered and glued back together or replaced but that's one heck of an improvement on coming straight at me! Melotonin only nudged Sam up to 4 hours sleep in 24 from 2 hours and in adolescence the production of melatonin appears to occur at a different time of day than for little kids. Nathan takes Risperdral but he also has severe anxiety disorder and it does not stop teenage aggressive outbursts, it damps down the anxiety that can set some of them off. You sound like your doing a fantastic parenting job.

Just a note; When Nathan was in mainstream secondary with a VERY strict school uniform policy the SENCO over-ruled the governing body using the Disability Discrimination Act (1995) pointing out this was a boy with very sensitive sensory responses and if they did not want a streaker they would have to allow him to wear clothes that felt comformtable to him in school colours. Nathan wore soft trutex sport shirts, sandels, soft fleece, soft trousers. Everyone else had to wear ties, shirts, blazers.... Annie at 8 refuses to wear anything BUT trousers or tights. She gets hysterical if the wind blows on her legs (poor kids a little bit too DAMP) her IEP lists how sensitive she is and again whilst other kids are 'encouraged' to wear the correct uniform the school cuts her slack to make life at school bearable for her. Its a fine line for them to tread between those who need slack cut because of genuine difficulties and those who cannot bothered to adhere to the uniform policy as they want to send their kids in fully fashioned labelled. *the joys of living in a wealthy area*.

Connexions are the best people to go back to for support and help. IF you stay on in a school sixth form your statement is maintained. FE colleges often have a spcialist post 16-18 department (old sixth form college) that might be of help. IF you leave the school system under law it is NOT but as others have said your needs should be considered and meet under the Disability Discrimination Act (ammend' 2005) in further and higher education. You would also be entitled to claim the disabled students grant to purchase needed equipment (ie computers etc) The OU is VERY good with special needs students; I am registered with them as one *grins*. Some Unis are better than others for meeting special needs just as schools are so it would be worth asking others with ASDs who study where they go IF at a later date you want to use higher education.

Nathan was assesed for and issued with one by the Physio who watched his tipietoe lurching gait when he was 4 and too big for an ordinary pushchair. His was provided by the wheelchair service. I bought the rain cover myself as all they provided was the chair and footrest as Nathan behaved as if water would disolve him when it rained. This was fine around the shops but its USELESS cross country. Maclaren provide details of the buggy and accesories here. http://www.maclarenmajor.com/ I bought a mesh underbuggy bag and a mesh handle bag for the buggy as well as two buggy straps to hold toys. Nathan used to erupt if he dropped any of his twiddlies. Maclaren are now making these items specifically for the major Elite but they cost more. The buggy is tax exempt if your chid is registered disabled. Sam however.....managed to constantly tip the blasted thing over with him in it. (lax ligaments plus ADHD + Aspergers = lots of accidents) and he was not happy at all near shops he wanted to be wild and free worrying sheep. Sam did not meet the criteria in the same way Nathan had so we used his DLA to buy some wheels to get out of the house. This is fantastic; its NOT cheap but if your a family who walks its fantastic! http://www.pushchairs.co.uk/acatalog/mount...terrain_xl.html The other ATP worth looking at if you have a larger less willing to move ASD person is this one but its hard to get hold of http://www.sailgb.com/p/jogging_pram_special_needs_5_jr/ Or for up to 17years http://www.kidsense.co.uk/products.asp?view=SpecialNeeds The Major was eay to throw in the boot or on a bus *cringe* and was okay taken over to Spain but the ATP was far nicer to walk miles with. ALL special needs pushchairs/atps/pediatric wheelchairs should be tax exempt/tax reclaimable if purchased for a registered disabled person *register with your local social services*. Hope that helps.

Ensure you back up your firm NO with supportive evidence as to why you can NOT accept either of these schools in writing to the PSENOfficer ad keep ALL copies and send the rotten thing registered post too.

Nathan was good. He hated the needles but managed not to hit anyone *whew* Right now he is enconced on the sofa with crisps; enough fizzy drinks to launch a ship on and unlimited access to the DVDs! He thinks he died and went to heaven despite the pain. Normally he knows he is not allowed to watch wall to wall TV. Hopefully this will have helped I am just not looking forward to persuading him to let the nurse change the dressings tomorrow. He manged to hold it together today but Nathan is of the 'you did it once...that is IT' school of thought. *sighs* my cunning plan of catching up with some housework whilst not at work kind of did not happen today either. Nathan has a low pain threshold if someone else does the snipping. I still need to work out how to stop Sam leaping on his feet to 'test' how much Nathans feet hurt.

I learnt to plaster during Sam's 'eat the walls' phase. Never did work out WHY he ate plaster off the walls. Have a look in yellow pages and if your council has a list of approved contractors check them against that. You could also ask around if anyone has had any work down on their homes and see if they can recommend the workman who came.

Thanks to Nathan persitantly walking on his curled over toes for all his life his nails began to ingrow. Because his nails in grew the daft sod this week took it into his head to try a spot of DIY chiropody with the vegetable knife, tweezers and a large paper clip. Then he went walking about outside with nothing on his feet with open wounds and surprise surprise he got infected nail beds *double yak* I did not know toes could swell up and go quite that manky so fast! So his longsuffering GP prescribde yet again the bumper pack of antibiotics and the try not to mend it yourself come and show the problem to me 'lecture' (again) The nice chropodist the GP arranged to clean and dress his toes for now took one look barfed and told Nathan he will be having his toenails removed and the nail beds killed so his nails do not regrow so he cannot do this again. He must have been walking round on increadibly painful feet for weeks and not said a word. Nathan HATES local's and is more concerned about that than having big white fluffy toe dressings. Rich chickened out of taking Nathan this comming Monday so muggins has booked the day off work and will have to try and sit on Nathan so they can get to his feet. For those who do not know nathan is over 6 foot tall and 15 stone in weight. It will be like a sparrow trying to keep a cuckoo in check. HOPEFULLY this time me and the nurses will not be more bruised and beaten than Nathans toes! Nathan has next week planned complete with what Nathan wants me to buy for Nathan for not belting a nurses senseless for touching him to the food and how he expects me not to go into work ALL week and wait on him hand and foot. *grok* *Nathan I know you are reading this. This is why I tell you you have caused me to have grey hairs. The colour runs out each time I pull my hair out when you do something you should have a educational qualification to do*

I leave the worries to the peaditricians. Annie is VERY underweight (under the 0.4 centile) and she eats everything in front of her (she is 8 years old and less than 17kg) If she keeps this up she will be back on maxijul!

We camp, same tent same stuff same campsite same places........... I found a nice quite campsite a long way up a small track that even Sam cannot escape from onto a main road before we notice he has gone AWOL. Caravan and Camping Club has a list of sites that indicate if they accept disabilities. The best EVER was in Kent but Nathan hates traveling through london so that became a nono for us.

Nathan stood out as weird even as a baby. When he was born he was very floppy with crossed over toes and fully flexed out posture rather than the more curled up newborn posture. Okay he was five weeks early but heck this was abnormal even for 35/40. He HATED being handled, talked to; if you sang he screamed and much preferred being in his cot with his cot mobile going around and around. He used to laugh at the sunbeams edges in the corner of the rooms and smile at them rather than people. He did not sit, walk or move except for a one armed commando crawl everywhere. If things moved he would drag them back or head butt them till I moved them. He spent most of his time under the dining room table slamming his head on the floor. I never did work out why. He would not eat baby food unless it was Tabasco and the day he found chilli tortilla chips he was in heaven...well he ate the whole packet. he never made sounds except to scream and by 12 months he found the love of his life. the tape player! Tim stood out more than tacky the Penguin could EVER hope to. Nathan is also autistic with a severe communication disorder. I was worried about him from day one and we are a family of aspies... but then so were the peads its just no one could work out why.

Get practical....write in to the program producers AND the company AND the channel that broadcast it. I always find 'I am writing to seek clarification as to the exact point the presentator/social worker/etc was trying to make always upsets people and makes then nervous about things being taken further and keeps them on their toes.

Sam had his given him by his speech therapist. His school uses Widget 2000 software to generate any new ones he needs. Makaton also use a picture system. The trick is to find the symbols that holds meanings for your son and use them. Wityh Nathan I had to make photo cards of everything he used as a symbol was not enough for him to make the connection.

Between 5-8 Nathan had the lower rate as it was not ruled he needed sufficent extra care when out when compared to say a normal over enthusiastic lively 5 year old. Remember they always compare against a normal child of the same age. I have no idea who this normal child is either. Nathan was awarded the higher rate at 8. No one has ever been able to asses Nathans IQ. There is not a test available that takes into account THAT severe a communication disorder. {Nathan talks incessantly but its over 80% echo from TV shows that he tends to get 60% applied in the right places as a response to a question} Nathans autism is very bad ( he is under one of the very few Uk specilaists who specialised in autism) and I think it helps that this person always fills in Nathans medical forms. Nathan falls into the grey area some times he has higher sometimes lower. I think they work it out according to his ability to do things NOW against what could be expected if he had not got a disability. I recommend using 'The disability resources handbook'; it explains what the rotton forms mean in understanable english . I will try and think of any other useful info later.

You could try and see if an occupational therapist could asses him and see if you get get such an item on loan from the disability services. Might be worth asking any of the parent groups who also have paremnts of physically disabled kids if any have one thier kids have outgrown you could try (my areas local parental newsletter lists items for special needs kids that are outgrown)

I know oxygen is supposed to help but the thought of Sam plus enquiring mind and interest in anything that can make things go 'bang' could be worse. I need to pin down and get a clear diaognosis. Is this truly cluster headache or one of its nasty little imitators. The pain is surely something so when it stops its like 'wow'. When its there life is vile. I am keeping a full in depth log to throw at the next consulant I see! Maybe with a real indepth set of records someone can work out the best action plan for now rather than trying to work on thens. Thanks to a VERY understanding Boss I am managing some time in the office and bringing bits home to do in between 'owwiees' *sarcasm* the house work went way back two weeks ago. I know it will wait for me to tackle it.

Sadly zomatriptain can join the list of triptains that just do not cut enough of the edge of the rotten things. I will continue to go through every scrap of information I can find on new treatments that are 'just' comming out. Jen I truly do WISH that anything available over the counter did work but they are useless as they cannot get near to taking enough off the edge of the pain to allow me to function. I am back to filling in full day migraine diarys so I can take something back to the neurologist (again) I need a decent drug as the thought of my four running the house whilst I am quitely wishing for death upstairs scares me silly. Guess who gets to clean up after their efforts once she surfaces..... So far I have had Nathan burnt the handles of two saucepans and the reason the fire alarm kicked off was tracked to a lightly* (cremated) wooden spatula left in the grill I think I added to Sams vocabulary with the inventive broad anglo saxon expressions I came out with because for that I HAD to get up and investigate then go and throw up after wards. Jo washed for me thats why all my white posh work blouses now have a grey tinge. Jo washed ALL her clothes (gothic uber black) with mine on a hot wash. Hers shrank mine look like they are 'fade to grey' I have not the heart to tell her off. For a 13 something weird kid trying to run the house for me whilst I am down I can only thank her for her efforts. Rich (my husband their dad) gets to work long hours problem solving computer techie and electronic problems all day long but he does not sleep and I KNOW where Sams ADHD came from so Jo gets to do more than I would like on some days until Rich comes home. Annie has even taken to dragging a stool over to the cooker . She made me creamated toast with cold baked beans from one of those rip open cans and tea with cold water milk. NO tea bag. (For those of you reading all my children are fortunate not to have intellectual impairments. Two are gifted IQ wise (Sam and Jo) whilst Nathan and Annie could not find their ways out of wet paper bags with maps they can both manage some limited problem solving. I would not recommend leaving the average ASD child to cook without supervision. I am fortunate that Jo is willing to step in and supervise whilst I am sick and I let her go off and do her 'own' stuff aka blue butterflies and HIM once I surface) In a funny way it is so nice to know I am not the only one who tries to juggle head pain and weird children on mass. Sometimes simply knowing your NOT the only one out there helps.