NobbyNobbs

its good to know that PDA kids can improve. having read the NAS info that is K. aspergers never quite fit (imaginitive role play, eye contact are excellent) but everyone is in agreement there is something going on. she's our most challenging placement by a long way, and nothing we say/do gets us any further than managing the behaviours for a short period of time. her tantrums/rages are absolutely exhausting and go on for hours at a time. last night she screamed at the top of her voice for 2 hours because she didn't want to go to bed. the same happens when we ask her to put on a particular pair of shoes/item of clothing/go somewhere/do anything. how can a 4 year old scream for hours over putting her knickers on?! its incredibly dispruptive. i arrived home one day when she was in a rage and i could hear her screaming in her bedroom from 8 houses away, goodness knows what the neighbours think we're doing to her. she is utterly non-cooperative. a typical play session goes along the lines of - (pretending to be a chef) K - what do you want to eat? we have cake and we have sausages me - i'll have sausages please K - no, you can only have biscuits me - ok K - what colour cup do you want? me - i'll have the blue one K - no... only green. and on and on it goes. today she was riding around on her scooter in the kitchen, we said if she wanted to do that she had to take it outside. cue screaming rage throwing scooter across floor. she makes up terrible stories blaming other people for things (in the scooter exaple she would then tell someone that i had thrown the scooter and wouldn't let her play on it) and is generally a nightmare to get to do anything. there's no doubt in our parenting skills fortunately, and if we can't deal with it most other people dont stand a chance with her.

citalopram made my sleep problems worse. apparently in ASD it can cause you to be hyper-alert and cause more problems than it fixes. i'm on mirtazapine now but i dont like it much, its very effective at dealing with anxiety and makes me sleep, but because its sedating it makes me feel tired all day too!

i'm going to raise going onto ESA with my disability advisor when i see her in 2 weeks. i've been getting hassle/abuse from the person doing my signing. today i took my support worker with me and she was so horrified with the way he was treating me that she's writing a formal complaint about him from her organisation! previously he's been very agressive with me, making me list places i've looked for work (when i said i'd asked around all the local nurseries he made me list them, trying to catch me out), then got really stroppy with me when i said i wouldn't do a work-trial at mcdonalds. today i said a job as a pot washer in a kitchen was inappropriate, my support worker backed me up and he got in a full blown argument with her about whether kitchens were noisy after talking to me like this - me- i asked about the job at X, but it turned out it was a kitchen job and that's not suitable him - *glares* why not me - because kitchens are too noisy and i can't work in noisy places him - yes you can me - ... no i can't him - yes you can... and kitchens aren't noisy anyway at which point my support worker chimed in that she's married to the manager of a restaurant and kitchens ARE noisy... to which he replied 'you've worked in a kitchen then have you?' he then threatened to have my benefit stopped because i wasn't keeping my agreement. when i said i was, it was all in there he then said i'd have to go and have it reviewed. i said that was fine if thats what he wanted, but i knew the disability adviser would side with me because i'd discussed all of this with her before. he then kept me there another 15 minutes doing a job search, coming up with a job contracted for 4 hours a week at what he would only say was 'a shop' that was open 24hours... i said the only places around here that are open 24 hours are tesco and petrol stations. he denied it was a petrol station, put on my records i had agreed to apply for the job and gave me the information... which states 'somerfield stockbridge forecourt' so it IS a petrol station. if the disability advisor can't guarentee i wont have to deal with him again then i'll go on ESA on grounds i can't cope with signing on. i got 98 points on that test, but dont hold out much hope as i've heard its tricky to get through and i dont have a very good experience of DWP medicals

i would expect they'll give him oral meds to make him as drowsy as possible, then without him seeing his arm put the canula in and top him up asap. the pain he feels is probably as much from knowing its there as from it actually hurting so if they can do it without him noticing all the better. do canulas in your hand hurt? i had mine in the bend in my arm (otherside of elbow) and i didn't feel a thing. i wont have anything put in/on my hands and they said that wasn't a problem. they took it out again before i woke up from sedation, so if all goes well perhaps he wont even know that he had it in the first place. also, has your son had a lot of nettle stings? my sister shoved me over in a field of nettles when i was 7/8 and i was head-to-toe covered in stings (and then she ran off and left me to walk home on my own, nasty girl). now when i get stung i get a really nasty reaction, the area swells and blisters, then the blisters burst and more grow on top. is really nasty and very painful so perhaps he reacts strongly too and it does actually hurt a lot more than normal

i would disagree with that. 'New Labour' are only interested in the interests of certain groups of working people (and of course single parents, the unemployed, social deviants etc.) unless you live in london or the north you dont get a look-in with labour because they put their money/schemes where they can win/buy votes. it's courtesy of labour that my parents would be better off if they divorced. when my mother had cancer and could not work we could claim no benefit because my father is employed... even though he earns just £11,000 a year... how's that for looking after working people? our area is a done deal. i have no idea when someone other than the conservatives won, but i bet it was a long time ago! on a side point i find the local elections far more exciting. i'm happy to vote for anyone who isn't our local UKIP member as he feels the need to walk along the beach naked in the middle of summer in front of all the children.

we have a very good ASD charity that is used by the NHS/SS to provide support workers as well as being independent. it covers 2 counties. admittedly the two are often lumped together, but they're HUGE counties and they seem to be very efficient. i called the NAS for advice about DLA and had to wait 2 weeks for a phone call which lasted 20 minutes. the advice given was useful, but there wasn't much time. i paid for membership to the NAS, the money was taken from my account and that was the last i heard. i dont recieve emails, mailings etc so haven't bothered to renew it (not that i know when to since they don't give me any information...)

ive read in various places that we can't claim for K because we are already recieving payment to provide care for her (foster care). now i'm reading in lots of other places that we CAN claim for her, for example - anyone know the rules on this? we provide a .tremendous amount of care for K, not only above a normal child, but well above a 'normal' foster child (who are far from normal anyway!). she is harder to care for than 3 children we had previously, all feral and 1 with ASD all put together. all social workers have acknowledged this so its not just us being dramatic. i've never understood why we couldn't claim because the whole point of DLA is its above normal care.. but i suppose since all foster kids are classed as needing more care it would be hard to draw the lines. we dont 'need' the money but could enrol K on a couple more clubs or start horseriding lessons etc which would really help her

i'll be voting. not voting doesn't get you anywhere, theyre not going to say 'lots of people didn't vote so noone will run the country'... the party i vote for have certain views that would make my life a lot harder, but the general thrust of their views fits with mine so thats the one for me. the bad bits, none of the political parties do what i would like and i'd rather be ignored than patronised and used as a 'we're not X-ist' label

the problem with the deadline is that i'm waiting on 3 consultant appointments and i need to request letters off of each of them. one appointment is thursday so thats not a problem, and i think for the other two i'll ask for the reports and send them in late as extra evidence. that way i can get the form in and at least not have that to worry about. at least the one thursday is the most important (physio) as i need a letter of evidence about the hypermobility and the problems it causes as well as that i have loss of nerve function in one foot. the DWP mecical person came to my house and decided that cos i could walk ok on our kitchen floor (completely flat lino and 8ft long) that meant i didn't have any trouble walking at all.

from the AS point of view = i spent upwards of 6 months unable to leave the house/attend school through anxiety. in the end the only thing that worked was literally being dragged out of the house screaming and forced to deal with it. that combined with certain special measures (i attended school part-time, then full time but in the library rather than class) got me back on track. understanding is incredibly important, but so is knowing that you can't go on the way things are and something has to be done. 'toughen up and get over it' does work for AS people sometimes (often), just like it works for NT people sometimes... we're not a completely different species! how old is K? if he's primary school age then i really do thing the standing your ground and insisting thing is the best option. for our k we now have a visual timetable, and if she resists going out to do something we take her to that and say 'but your tiimetable says thats what we're doing' and then she feels she has to do it! can't argue with the timetable (although i have caught her sneakily rearranging it so her swimming lessons are on whatever day it is rather than wednesday!)

K has weather issues. she whinges and moans constantly about the sun, wind, rain, cold and anything else she can think of. we now carry sunglasses for her, and she generally has a hooded top and if she complains about the wind we put that up and she stops. not ideal as i didn't want to be dependant on 'things' but we are now turning it round to her responsibility. if she complains its too sunny we now respond with 'well you should have brought your glasses' as at this point i expect her to start organising her own life. if i know she'll need them i do try to remember but ultimately i've placed it all on her which stops her going on at me. as for leaving the house, we had this one too. if she refused she was placed on time out until she put her shoes on and cooperated. if she sat on time out for 2 hours with her shoes in front of her that was fine, but she wasn't getting off time out and doing anything else until she cooperated. if we missed the window to go out and do whatever it was, we still went for a short but very brisk walk somewhere so that she still had to go out and explained that she had missed the fun! it took about 4 months but she now knows not to bother. she'll still whinge and complain, but does it while putting her shoes on!

do you claim DLA? do you get funding from SS for looking after your grandchildren? sorry if thats offensive but it is sometimes set up that way depending on legal status on the children and it means you can't claim DLA as far as i know (and if you're not getting funding you can ask for it, again depending on legal status - they tend to 'forget' to mention these things). the resources thing is possibly family fund? i dont know how that works but there's a thread on it somewhere.

they never asked for it before, the manager admitted they probably wouldn't ask for it again. i probably overreacted, but i'd never been asked it before and still can't really understand why they need that information on top of everything else they'd asked. and had been hassled by the call person already as he got cross with me at the start saying i was giving my NI details wrong and again when i couldn't tell him the exact amount of jobseekers i get paid (weekly, 2weekly? how was i meant to know). it turned out he'd put in the wrong surname, but had me repeat my NI 4 times before realising. i'll call them back tomorrow and see where that gets me, hopefully if i call early i wont have to be on hold so long. and then use my inability to deal with the phone conversation as evidence on the form. not sure on the fairness of being told i couldn't make a complaint, and being hung up on but nevermind.

i know its all on the computer, but at least then theres a record of who has accessed what/when etc and its not some bloke somewhere that i can't see who will only tell me hes called 'sy' with all my personal details who can perfectly easily write them down. also not quite sure why after giving them name, address, post code, date of birth, national insurance, what levels of payment i recieved, that i recieved jobseekers, and what rate for that they felt they weren't sure i was really me! i'm pretty sure if i went into my bank and told them the details they wanted me to give out they wouldn't be too pleased. every piece of literature on identity theft ive ever read says dont give out your bank details over the phone. i've called them lots of times before and they've never asked for it, so alarm bells rang when he asked this time. the managers only response to this was 'we dont always ask it'... so why on earth were they insisting i tell them this time if they dont actually need it to access my information. i offered to answer any other question they wanted, but he just said i'd failed, and that i could keep calling back... so if i really wasn't me then surely i'd just do that and theyre no better off! i had a letter and the forms ages ago, i've lost the letter so called to ask them to comfirm (its somewhen in may) as i didn't want to miss the deadline.

i just phoned the DLA helpline to find out when i need to send my renewal form in by and they deamnded i give them my bank details. i refused to do this and they then refused to help me. i asked to speak to the manager who said that i had to give the bank details if i wanted help, or i could write a letter. i said i couldn't write a letter, that was part of my disability so he insisted i give him my bank details. i said i had never been asked this before and i wouldn't give them. he then said the questions were random and i could continue to phone until i didn't get asked my bank details, but refused to ask me another question then. i wont give them my bank details over the phone and explained why - how do i know that 'sy' in the call room isn't writing them down? he didn't answer this. i then asked to make a complaint and he refused to let me, saying he was the manager. i then asked for a letter confirming that he was refusing to speak to me because i would not give him my bank details and he said 'we'll see' and hung up. so now what do i do? i'm not giving bank details over the phone, but i can't write a letter and am loath to spend a fortune on phone calls sitting on hold for 40+minutes each time to be asked the same thing. all i want to know is when i have to send the wretched form in by! (i'd just send it in but i have 2 consultant appointments in the next 3 weeks and if i can include the details from them it will help my case). you heard endless news stories about how you should protect your identity and since i'd already given him my national insurace no, full name and address and DOB, plus details about my jobseekers i dont see how its safe to then go ahead and give him access to my bank account! anyone know how on earth you make a complaint when they wont let you make one

i found them! they're on the do2learn website, under the resources - PECS thread on this site. i forgot to say the reason i think these will work is she was given a book for christmas which was a wipe-clean book (peppa pig i think) and dry-wipe marker and then one page had a step by step how to draw a dinosaur (just a bloby shape with eyes and a smile, spikes etc), and she spent weeks doing this over and over. the guides have the instructions down one side and then space to draw so i'll laminate them and give her some pens. i think she feels more comfortable drawing where she can wipe it out straight away or scribble over it so if its 'wrong' its gone. she loves drawing, even if it is just faces and i suspect will be quite good at it, she had underdeveloped motor skills when she came but has made fantastic progress at it over the last few months of intensive play-dohing. now she can draw round templates very well and has a photographic memory so can replicate things perfectly when the mood takes. all good preperation for when she has to start writing at school... although again we have a set of dry-wipe boards with big letters on and she spends ages drawing the letters out perfectly.

its important to talk to the GP about it. some are really helpful like tally said, but they can also be incredibly unhelpful. the form sent out to the GP is very limited and if they fill it in giving minimal detail it is very misleading. a different doctor at my surgery filled mine in and this is the total of what he put on it - medical conditions - asthma, possible AS (even thought i had full dx), depression. he ignored the hypermobility, agorophobia. IBS completely then to the question 'what effects do these have' he wrote 'sometimes breathless during asthma attack' (i'd like to see an asthma attack when you dont get breathless!). thats all he put and the DLA people took that to mean that was the only effect of those conditions. i now have a letter on my medical records stating they're not to send any letters to anyone without my permission and that i expect to see all letters before they send them. i had previously tried to discuss the DLA forms with my doctor, even bringing in a copy of the NAS aditional information sheets. her response was 'i dont need/want to know any of that'

i'm sorry you're going through a tough time i agree with kathryn. if he can't deal with the chocolate situation i'd remove it completely, particularly as violence over a bag of chocolates is unacceptable no matter how stressed you are. what will happen if one day the shop has sold out of m&ms? would he attack you over that? or if someone brings him the wrong food in a restaurant would he hurt them? i think he needs to get a clear message that violence is unacceptable and if nothing else he clearly cares about the chocolate so that may be the best way to deal with it. i would also be wary of assuming that because he is not acknowledging anyone elses emotions he isn't aware of them at all. AS means we interpret things wrong, and can't tell which emotion people are feeling sometimes, but as far as i know it doesn't mean that we dont know that something is wrong.

the citalopram may be causing the sleep problem as it can cause hyper-alerting tendencies in some people (me included) which cause the mind to race, and make it very difficult to calm down enough to sleep. this could be masked by the 'psyching up' for the tests. did the problem start/get worse after he started on citalopram? i'd go back to your prescribing doctor and ask for an alternative

in oder for an interim care order to be granted there has to be considerably more going on than the information given here, was he under a care in the home plan prior to being taken into care that was not met after you signed a contract/agreement, this is the most common route these days and i would think so judging by your comments about agreements with SS. it is also somewhat risky for yourself to be posting here during court proceedings - are they going for a full care order? if so social services will be evidence gathering. under an interim care order you still have some parental rights and need to talk to your solicitor about any concerns/issues you have. you can then have these issues raised at his LAC reviews where all professionals (including your sons court appointed guardian) will hear your concerns and discuss/address them as they see fit. frustrating as it is your sons social workers have a large number of children/cases and you will learn they are almost always on the phone to someone about something. if they delayed the start of your meeting it was because another case had to be dealt with (children in care are considered 'safe' and priority is given to those still at risk at home )its not deliberate rudeness, its just the way the system is at the moment, with social workers having double the case-load they should. you dont say how old your son is, but if he is under 16 then he has very limited say in what the courts rule (his court appointed guardian will talk to him about his wishes and speak for him in court and at certain meetings, and he will have forms to fill in for each LAC to say how he feels, and is meant to be present for certain meetings). if you are encouraging your son to reject his current placement that will count against you very badly (not supporting your childs mental health by creating conflict) and you may lose contact rights completely. all in all i really do suggest you speak to your solicitor and follow his instructions or you may well make things worse for yourself.

easter for me is all the religious things, plus a lot of chaos. i organised a craft morning on good friday for 50 kids, and then this afternoon we had an easter egg hunt so its a lot of running around doing community outreach (everyones welcome to both events). i dont like chocolate so i generally dont get eggs.

our old dog was banned from the vets and we were told they would inform the authorities he was dangerous (they never did) because he growled and snapped (not bite) at a stupid vet who grabbed him by two legs and yanked on them trying to shove him to a lying down position. he was a st bernard so that was clearly never going to work, he weighed more than me! all she had to do was pat him on the head and then tickle his tummy and he'd have gone down happy and stayed there! the vet had also told us she was afraid of big dogs when we walked through the door so obviously didn't have a clue what she was doing. it amazes me these people are allowed to look after animals good luck finding someone who will look after her for you. we're currently searching for someone to look after our chickens and that is rather complicated, think we've settled on someone who can come round and collect the eggs and top up the food and water without any contact with the chooks (who dont bite, but do like to escape and refuse to go back into the run)

for those whose kids use these - do they block out all sound or just reduce the noise? we're planning to drag K to the cinema to see the new nanny mcphee film as she loves the first... but need some sort of noise reduction for her. i'm just aware that the last thing i want to do is reduce the sound so much she can't hear whats going on!

mine was for 2 years because they wanted to be as awkward as possible. the renewal form arrived less than 2 months after i finished with the tribunal (that took 18 months to get to!) the online form will be great as it means i can do it in the evenings, whearas the paper one i have to do on the kitchen table and K always wants to 'help'

i'm doing mine at the moment, the forms seem to have changed slightly, and surprisingly seem to be a little bit easier/less based on physical issues. my only grump so far is that they dont give you enough space anywhere, so the 'any other information' bit is full and i keep losing track of what i've put where. i have no choice but to do the forms myself, my mother took one look at them and said 'you're on your own!' good luck!