Elouise

This place http://www.tfhuk.com/ Absolutely BRILLIANT Nathan cannot get his hands on enough of their stuff and it even withstands Sam at full pelt with a screwdriver! It is expensive though. Wesco make a huge range of soft play shapes and ball pools if your after a complete sensory/play room and can get the funding together for it. They have aUK outlet but I am struggling to find it on the web and my lunch time is short todey. http://www.wesco.fr/anglais/toutplan.htm

Government party policies and white papers...now those are truly works of fiction. (Sorry the only real fiction I like is T Pratchett because he pokes satire at our socities. I just seem to lack the ability to 'get' fiction)

There is a job share position between and advisor on disability. You can find it here. http://www.officefordisability.gov.uk/ MPs are not supposed to have conflict of interests, they are meant to represent their party and the constituancy that voted them in. They MAY be asked to represent an area affected by government policy in either the cabinet or if in opposition the shadow cabinet. The Office for disability is very recent has arised from the current governments interest in pushing through policies that facilitate the social model of disability. Its mostly staffed by civil servants.

I am pretty certain you would have a case to lamp that Social Services department for disability descrimination for decideding you had to be a poor parent as look you have a disability...they used the medical model and not the social that they should have used under current practise. Your solicetor should be able to help get you in contact with the correct disability discrimination lobby groups.

Nathan has done this for years. The others are correct to say push for an appointment with CAHMS. You can also ask to go through the CDC too. Nathan has to have a twiddly in his hands all the time otherwise he literally picks his poor face off. Its also worth going to the GP, Nathans cannot stop him harming himself like this but we have the following arrangement with Nathan, Red raw bleeding and sore, use the special anti-infection creams from the doctor to stop getting impetigo in the wounds (again!) Your HV should be able to tell you the symptoms to warn you if he develops a skin infection. Those can be hard to clear up if you miss the early warning signs. One of Nathans took two blasted years after I thought 'oh well leave it till tomorrow I am tired, surely it cannot be that bad by tomorrow morning' WRONG...I had to take him to E&R after I saw him the next day. Keep Nathans nails short and scrubbed to reduce the risk of bacterial infections of deep guages rather than wounds to the surface of the skin. The latter leave scars. If Nathan ever over does it he comes to me and I use the hospital issue wound dressings to clean and patch him up. If its still bleeding after 10 minutes we go to casulty and if he has removed an area of skin larger than the size of the palm of his hand I ALWAYS take him to casulty (thats a good rule of thumb for anyone else out there with skin removers) Thanks to NICE guidelines hospitals are becomming more understanding towards kids who harm themselves from anxiety and distress. *sighs* it also spends up your referral to CAHMS, Nathan is so well known I am allowed to self refer him and he gets seen whenever I suspect he needs to see them. (That is not a good thing to have it means they think he is risk to himself) Repeated self injury leaves 'lichification' (makes the skin toughen up and go lethery) Nathan has some darn good specialist creams from the consultant dermatologist to help sort out his worst goes that involved removing the skin from the fronts of both his legs with scissors...and yes that WAS a casulty job BUT he did not do this till he was 11 and the removing skin response to stress had become deeply ingrained. CAHMS have helped Nathan find less destructive ways of dealing with stress and anxiety, as others have said watch for when he doies this and see if you can see anything leading up to it. If you can get in and break the stress/harm cycle by earlier intervention go for it. I wish I had been able to get in before Nathan hit 7, everything he was still doing after that he cannot break from doing. The best thing I can do for Nathan is treat this form of self injury in a matter of fact and calm way, if I worry about him doing it, he worries more then harms himself more and we get stuck in a cycle. I KNOW he pickes so I point him towards eating holes in his clothes or hlding a block of ice to melt in his hand or write over himself with a washable pen or go play with his 'twiddle' lights in his room. Heck he can have his gameboy in his hand 24/7 if he leaves his face alone. The important thing is to work out what works for your son and for you. People can share ideas and things that have helped them but your the one who deals and lives with this and you know your son better than anyone else.

Might be worth contacting KIDS in london to see if they have any inclusive projects running in youth groups and so on near where they live. Its also worth contacting the Area Youth Worker *go through the council leisure and recreation options first* for the area you live in and ask what is available in your area that meets his needs.

One of my frineds has a aughter who struggles like this. She contacted ERIC went through all her daughters problems and difficulties and her learning problems and they helped her to come up with ideas to cope and how to push to be seen at the hospital quicker to improve her and her daughters life. http://www.eric.org.uk/

Nathan had the MMR. Jo had MMR Sam...erm overreactive fruit bat had his DTP and HIB delayed thanks to having raised IgE so there was no way I was having anything cultured in a protein injected straight in having seen what he can do with the stuff in his hands. Annie well I did ask her peadiatrician but he said he would not if she was his given what Sam is like, given all her problems in her first year of life and given how sick DTP made her so she has not had the MMR either. In Jo and Nathans case the risk of measles outweighs the MMR but in Sam and Annies case due to their very differant medical histories its the other way around. I may let Annie have the MMR once she stops flatlinning on growth charts but Sam...no way...I have seen that boys reaction just handling egg.

YES!!!!!! and 24/7 in Nathans case..he even does echolia in his sleep. Thats why we have a big box of ear plugs.

Thats not even remotely funny. Glad you all got in and did not need to call a glacier to fix windows as well.

Have to be fair. Rich holds a management post as a comp/techie troubleshooter. it takes him nearly three hours travelling time per day and he is very good at repairing Nathans DIM (did it meself) attempts at rewiring the house, removing windows with his head and repairing the cooker, washing machine, dishwasher, TV, DVD etc etc after Sam has been busy with a screwdriver and his enquiring mind. He also stays up with Sam at night every night and has done since the little none sleeping horror was hatched out of a people pod . To be honest I would rather Rich did that so I can sleep than tried to do the house work and left Sam to me between 12am and 4am. If Rich did not deal with Sam at night there is no way I could deal with Nathan at night *too tired by then and my ears feel like they are bleeding from his none stop echolia* and then get up to study, go to work for a few hours and field the muppets when they come home at 2pm and 3.30pm. The sad thing is my idea of a night out is to head off for a university lecture and my all time best day would be hill walking and camping with just maybe a decent pint outside one of those tiny old CAMRA rated pubs.

Sam lost his first tooth at school. His teacher told him that a special fairy would come into his room at night when everyone was alseep to take his tooth and leave him money. Sam did not like the idea of someone comming in his room when everyone was asleep especially someone who stole your teeth. He stayed up all night armed with a torch, a 4 foot bokken (japanese wooden sword) and surrounded himself with traps lots and lots of fairy traps!

I have decided that I can never be ill and stuck in bed for over a week again. The chest infection was nasty, the allergic reaction to the anti-biotic was somewhat colourful. So was my language once I could speak felt so awful I simply crawled to bed and pulled the covers over my head working on the theory that Rich could cope with our four at full pelt and work instead of me for one week. I even pulled in favours from those who owe me their mortal souls to get Sam & Annie to and from School for Rich to get to work! (Nathan's in a taxi he gets lost trying to find the end of the drive) BOY was I wrong. Its taken five strong cups of tea to get over the state of my lounge. Nathan had left his elderly and incontinent bunny loose forgetting the poor thing needs steps to his litter tray so the poor bunny did what a bunny has to do ....everywhere. And did he clean the cage once? Of course not. I cannot believe Rich failed to notice the smell....I cannot believe my four happily sat in that mess adding extras to it in the form of crisp packets, sweet wrappers Annie's snail collection and things even I am scared to try and identify I just hope they were dead. Just about coped with that...then I went into the kitchen....... *cries* no food, rubbish all over the floor, Nathan's attempts at cooking burnt on to every surface, sticky something on every surface, a new N gauge train track layout has been nailed to the table (Sam) and unlucky for Jo I DID find the two phone bills she had carefully hidden as she got to the post last week before me....even I resorted to drinking out of a jam jar whilst i wait for the dishwasher to remove all the blue fluffy fur from the cups and mugs! The beds all looks like a mud hurling contest was organised and no one is to talk to me about the state of second bathroom. no one worked out what the washing machine was for either , you would think in a house full of man men who love technology one of them would have known which buttons to use. I spent my day off work with a paint stripper, bleach, abrasive cleaners and Zoflora. Thank GOD I had the sense to replace the carpets with laminate and tiling, the sofa with a washable leather one and everything else is machine washable or I think I would have cried and had a relapse. I have just added NEVER be ill again to my list of things to do with my life. *and after all this I am still thinking of training to work with more kids like this lot!*

One things is very clear, whatever the reasons causing it, your daughter is mentally distressed. You are not refussing to send her to school, she has choosen to refuse to attend school. (Nathan pulled the same trick at 12) CAHMS are the best people to help having been there done that if she ever becomes EXTREMELY distressed please remember that you can go to casulty, if your able to get to a childrens hospital with an A&E your more likely to get a peadiatric psychiatrist on call. The depression is potentially more dangerous than ASD which is why they want to tackle that for her first. Also have a look at the website for Youngminds. Sadly ASD can bring extremes of mental distress in some kids and you do need to take it seriously and be prepared to shove your foot into doors to get them help.

For Sam who has ASD/ADHD I tick the following boxes in part 5 Has problems with speech and language which effects communication with other people. Has a learning difficulty ( yes gifted minus all common sense! Lethal mix) Has a mental health problem (gets stressiyitisis that leds to anxiety) Part 4 gives you a box to detail the exact disability (rest assured the staff do go look the words up in a medical dictionary.) Part 6 to 27 gives you chance to DETAIL how your childs disabilty impacts pon their life. I also recommend getting your hands on 'The Disability Rights Handbook' http://www.disabilityalliance.org/drh31.htm

The journalist has written two conflicting sentances. First in # 2 there is this Then in #6 This reads as if he was trying to get through to a journalist the differance between autism (as nathan has) compared to autistic traits which MAY point to an ASD disorder or MAY point towards as the schools made group indicates, emotional and behavioural difficulties. UK Local government does not spend money on special education of any form unless it has to. Central government merely formulates the policies. Sadly there ARE parents out there who for whatever reasons think parenting involves saying yes to everything and they then wonder why said child by five is a horror to live with. If you add that into any form of ODD or CD oh BOY. Most parents of ASD kids are already up and running on behaviour intervention, SALT, CAHMS and so on before 3 and thats way before other parents are whining that their little stars are not top of the class. I can imagine those stratergies working with kids like Sam but Sam is a complete muppet who goes like a tornado from ADHD (real Macoy not some flight of my imagination and he does not sleep because he does not sleep not because his room is filled with gadgets) Nathan however would produce some spectacular behaviour if anyone tried to get near his gameboy, at his old special school he was one of the very few allowed to have one IN class as it made his behavour better and that was with two teachers working with one Nathan.. If a teacher was to ask me to remove stuff for Sam I WOULD because Sam is Sam. If anyone asked the same for Nathan I would suggest they could try and perhaps go in wearing protective clothing of the sort worn by Father Ted to deal with Father Jack and ...let them try! The one thing that does concern me is the probablity that this could easily become a 'one behavior intervention fits ALL children'. I know from my own four horrors this is not so. It should have been presented by journalists as 'with this small group (about 16 children) it has been found to be beneficial to encourage them to SLEEP by removing distractions to sleep from their bedrooms. It would also have been good to know what conditions these children truly do have recorded on their statements before any sweeping generalisations were made by the journalist. Sorry I have dealt with journalists from the BBC to the local rag and all have had their 'own angle' and slant they want to print. The few times I have seen my comments in print its not been what was said....its been spun to get the angle even though I always stick to three points and hammer them home repeatedly

I tried Nathan on the CF/GF couple of years back. His behaviour was so challenging ANYTHING was worth trying . Lets put it this way even we had been driven to the point we offered to hand him over to social services nay BEGGED them to see if they could shove him somewhere just so our families frayed nerves could unwind enough to have another go. It gave him something to do for a couple of weeks but it made absolutely zip differance to his behaviour and ate lots of dosh to do. *ah well it was worth trying* Sam however is slightly differant. As a baby he screamed pretty much 24/7 did not sleep, his skin looked permantly red and blistery. At 3 months his eczema and lumps and bumps were so bad he was covered in icthabands. By 5 months I had managed to push hard enough for an appointment with a peadiatric dietician at the regional childrens hospital. She took one look at Sam and slaped him straight onto a total exclusion diet (rice, organic chicken, organic lamb, pears, carrots) and Prosobee. Sam is allergic to casein in milk. He had tests and challenges run at the hospital and was found to have an unbelievably high IgE count and to be allerigc to nuts, severely intolerant to eggs, fish but NOT gluten. If Sam had anything with milk in he would projectile vomit and break out in hives with swollen lips, thankfully he has calmed down a tad and merely throws up and breaks out with a nasty itchy rash if he gets hold of something. Sams CF/nut free diet is horribly limited by himself. It consists of toast & marmite and the occasional wheatabix (dry) granny smith apples ONLY, raw carrot, chicken, cucumber and maybe just maybe a chip or two. I do know that for those who do benefit from the CF/GF diet there is an absolutely AMAZING improvement and you can tell within nanoseconds if they have eaten something they should not it would be intresting to see what the results show for this group compared to the entire test group.

...compared to some of the names I have called Nathan on discovering his efforts at 'cooking' and 'cleaning' and the fact it takes me an hour to clean up after he makes me a cup of tea *please do NOT ask ...shudders...the saucepan and the ceiling will NEVER be the same again* believe me Piglet is MUCH nicer. And I have called Annie Piglet since she was born as she is kind of small and is the runt of the litter and rather like Piglet from Winnie the Pooh. I find some of the tripsy overself from PC'ness more cringe making. Watching Nathns Social Worker trying to find the 'postive' thing to say about his 'more difficult aka CHALLENGING behaviours is to watch an art form in the making. Bless the lad.

Sadly migraine is something I HAVE to know a lot about. Been juggling the beasts since I was teeny. Sam gets them too *poor lad*. In Sams case he starts off being more 'jittery' even by his normal ADHD standards. His behaviour goes all whiney and down hill. His tummy hurts a lot aka 'oh ######' tummy because that is what Sam says when it starts up and its about the only thing that makes Sam STOP moving. He too ends up curled on the floor crying because he has a headache in his stomach. They also make him sick and even Sam will try to go to sleep something he does not do easily. As Sam has grown the migraines have moved from just his stomach and settling after an hour to beginning in his stomach and moving to his head. He has nothing but my deepest sympathy, heavy pain relief (migraleve as it works for him) a hottie teddy as he finds clutching that to his head works better than an ice pack and a cool QUITE totally dark room with a bucket for company. Neither of us makes a fuss about migraine as for both of us its a fact of life. I make sure he is safe, clean cool and as comfortable as I can make him, I also check he has not suddenly developed any 'worrying' symtoms and just keep an eye on him. Sam usually feels better and is bouncing again after 10-12 hours and he averages one attack per month. Its not confinded to an exact time of day same as my migraines are not confinded to a time of day. That side of it does sound like anxiety induced and reserach certianly indicates that stress and anxiety can in of itself set off a migraine attack. Have a look here to see normative patterns of childhood migraine http://www.migraine4kids.org.uk/index.htm Sam also shakes ...from pain not from fits but then I also shake badly and I also loose my vision and hearing on one side during the acute phase following on from the 'aura' I also collapsed a lot so had to do the EEG to rule out epilepsy as its rare for people to collapse in that way with 'just' migraine. Throwing up is sadly part and parcel of migraine for many sufferers. My neurologist said that happens when the stomach 'switches down' at the start of an attack and you try and put anything in its quickly thrown back out. This is one of the reasons that drugs have been developed to be taken nasally by inhalers, instant melts like heart tablets and even auto-injectors for the worst off who can cope with sumotriptain. If it is migraine there are a lot more drugs that are effective available now than existed 10 years ago. Its important to rule out any possibility of epilepsy esp. in a child who already has ASD. If he is unlucky and does have migraine their are some very good peadiatric childrens migraines clinics but I warn you the waiting lists can be longer than for adults! (If your desperate you can always ask contact the London Migraine Clinic)

He should NOT loose his DLA unless he attends a residential special colege. If he goes to a residential specilaist college then its pro-rata; he gets DLA for the weeks when he is at home but not when staying residential (the DLA pays for a small part of the care fees) If he stays at home and goes to college he is entitiled to DLA. He is also entitled to make a claim on the disabled student grant. Get in touch with connexions again and keep pushing untill you get hold of someone wth more experiance of assisting a student with disabilities to get what they need. An ordinary less experianced connexions adviosr will not know as much but if you encourage them to ask and have a look you would be grateful as would your son the results are usually better.

try starting here on for initial info on disabled students allowences and grants. http://www.direct.gov.uk/DisabledPeople/Ed...dTraining/fs/en

Before I begin I would like topoint out my kids have exceptionally good schools that are keyed up on ASD and its co-morbities. I agree your being fobbed off. Sam and Annie go to a mainstream school. Its listed as a regional resource for demonstrating inclusive practise below are some of the things they do for my two. Sam ADHD / Aspergers/ Allergies & Gifted and Talented. Mainstream (has won awards for inclusive practise and teaches other schools re inclusion) FULL Statement Has his own LA who is with him for all English lessons, leaves him to it for science and maths at Sam's request and makes herself available if he gets stuck. All other LA and TA in the school know who Sam is and step in to help if he asks or if he looks stuck or appears where he is not meant to be. The school has also created posts for three roving behaviour mentors who step in when any child becomes challenging stuck distressed or just needs to step out for a break. (that really won my vote!) They also created a science club at lunchtime and allow him to access the library/computer suite with the nominated behaviour mentor (who assists at lunchtime in place of the TA's and LA's) when he gets fed up with the other kids but they also encourage him to try and join in outside and they have play assistants who run non competitive playground games for children who need structure and support to mix and join in. Playground pals system. They ALWAYS use social stories, always back up abstracts with symbols and ALWAYS give him photos and books etc on any new changes. they even make external visitors formally introduce themselves to him by letter with a photo attached. Annie Pead is puzzled thinks its DAMP waiting for CAHMS to have another guess Mainstream High Focus Plus School pays for LA to help her with English/Maths and recording work Provides gross and fine motor OT bought in from local special school Provides specialised interest groups at lunchtime so she does not have to be outside at lunchtime. Operate playground pals system to allow more mature pupils to help less confident. Provides extra sessions 1:1 in the 'zoom room' to give her chance to allow her cohesive learning Provide access to behaviour support mentor for when she hits 'overload'

You NEED to have the high rate to access the scheme.

Whilst I AM glad Nathans funding finally came through I would far rather he did not need such funding in the first place. I have spent the past few years trying to get statutory services to asses him on the grounds I KNOW he is very badly affected by ASD but its at that point the profesionals choose to 'ignore' the fact I used to work WITH them.....I suspect I finally manged to get this for him because I geared back into 'profesional jargon' and blasted them with the social model and meeting clients needs and pointing out cost factors for failure to do so long term and ooohh......to think I used to think parents used to simply whine by friday afternoons...now I know its from a mix of exhaustion and not knowing how to target what they wanted and persisting to get hold of it. So Anyone else out there who will have to fight for funding keep EVERYTHING you EVER get on them carefully filed and Think as persistantly on getting funding and go all out to get as your child does on their special 'thing' Its a hard slog but its been worth it Nathan even has a possible maybe gosh slight upturn to his normally empty expression. Now Nathan is at college I am going to go back to bring my training up to date and go to work again doing the job I loved before Nathan threw the big spanner in when I found I could not afford the special needs nanny he needed.

Yippee! Nathans funding for a ******** College has been passed and agreed. He starts at the start of Sept this year. YAY after two years of putting my foot in doors and refussing to move it and offering to bring an unexploded Sam with me tis DONE.....*faints in relief* Someone else gets to deal iwth the horror on his bad days over the next three years. Sams statement has been upped to eight pages to cover the toads gifted status on top of his ADHD /Aspergers so now for the final and toughest round on this parenting three peaks...finding out what the HELL is going on in Annies head and getting her that FULL statement instead of a stupid school action plus plus. If I had not keeled over from a chest infection I would crack open the bottle of fizzy I kept back hoping to be able to celebrate this. This has made being off work sick well worth the pain. (edited to remove name of college -K)