allsetuk

if i could edit the post title i would , because the very nice people at panorama have come back to me and said they are more interested in the LACK of support we are getting as parents to ASD children ....i explained to what we all go through and told them about the social services lottery and lack of help in terms of care /respite/ help /slow response times, children being discharged, lack of DLA mobility support becuase our children can walk so often get no help even though they are frightened of public transport etc. all the things that we always talk about here... it would be great if they could do a programme to help us

i used to get organic food from abel and cole delivered a box every week, ive had to stop that and most other things i feel totally backed into a corner

i also have experience of the harrogate NHS ...my son aged 6 has been discharged .with a "he is continuing as expected . contact us when he realises he is wierd" statement!!! i couldnt beleive my ears

my son does this constantly..cant sit still ..but im not sure why ...

I am currently talking to the producer of Panorama programme about how the credit crunch affects families. Is anyone here able or willing to say how it has affected them credit crunch plus having a disabled child that i could pass on to the programme. They seem really interested in putting across this angle to show what if anything the government is doing to help. They are also looking for someone to be interviewed.

thanks for your comments .....yes bikemad and me have said before that we have alot of similar behaviour patterns going on with our boys.......its these blooming school holidays....if my son isnt out learning being occupied every day ...from morning to late at night he just goes mad ..i dont have the funds to do anything with him this summer.

wow that makes my 10 weeks sound like nothing ....are people all over the uk having to suffer like this then...?

i cant even get them to respond to a request for assessment etc ..no calls no letters nothing ...terrible!!

HI ive been to italy quite a few times with my son in the past ....over there they call him "spirito libero" and my son is quite happy, more than anywhere else ive seen him ....i think the way they interact and perceive children is so different. They want them to be vocal and encourage them to be themselves ....its a wonderful place for non conformist children.

i just watched miss potter and it made me cry and now i cant stop cos i feel so guilty that im not dealing with it right .....my son is only 6 too and really clever and i think he knows somethings differnt ...he keeps saying im sorry i cant help it , i just get so mad, or it just makes my tummy hurt....but im so confused with people telling me that their child does this and that and that my son is just naughty..that .....i think i just make matters worse....i saw cahms just before holiday and she said devise a home plan so that he knows the rules, he just keeps destroying it, hiding it, rewriting the rules to want he wants. I say no we are not doing that ....he gets more crazy.... he wants so much to be my equal and says im grumpy and all i ever do is boss him around ...hes right i do ...but thats cos im on my own ...competly exhausted with it all and in these moments where he acts like this i just dont know where to put myself ,i walk off he slams doors, climbs doorframes..tries to run away ...... what my neighbour must think i dont know...my family dont want to know or help ...they cant cope with him for more than a few hours and they dont drive and they are 30 miles away. i contacted social workers for help ....around 10 weeks ago ...nothing not even a letter or a call!

i cant take much more....i am struggling to remain patient and calm , he is just so naughty, i dont know why or whats causing it but he just goes into this mode where he is like unreachable., no conversation, nothing i can say can be heard...running like mad, punching , slapping. then seems to forget after the event that he has done it.....tonight after we had been out this afternoon to a aircraft museum , he came in , took all his clothes off as usual and then its just non stop verbal talking At me...do this do that.... if i sit down for some nice time with him. which i tried tonight he sits on me, or twists and turns on the sofa so his feet are in my face, if i touch the remote he grabs it and says its his .......and goes into this like chemical overload where what ever i say he says the exact opposite, he is 6 going on 14 , i say please dont do it, it hurts me, he laughs or says will if i want too...ha hahaha ....this is like a red rag to me then cos i cant beleive what im hearing....when he was going crazy tonight he fell over....if i move rooms he climbs doorframes and thuds on the floor constantly ....... yesterday we watched supernanny together, he watched this american boy behave exactly like him, slap, punch, kick, answer back , attack and destroy things and he was mortified, saying i would never do that would i mummy, he couldnt beleieve how terrible this boy was and yet he was exactly like my son......ive tried the naughty step/cushion / place ..ive tried reward charts ..the thing is i dont know what is naughtiness, what is asd, whats adhd , i just know he is out of control for certain periods , and yesterday after we watched the show and had a really nice discussion like 2 hours later he was going crazy and trying to rip the good behaviour chart down and ran off with it....after he snaps out of it ...he seems really annoyed with himself ...... i feel like im at my wits end.

me too and i feel like im being a right grump , in the home i cant take anymore of the constant buzzing noises, humming ....im going insane, mines been off since JULY 9th !!!.... im trying to finish all my assignments for my Masters degree and i cant do it on a night cos im too tired and he wants to go to bed later than me, without melatonin hes up till 11pm .....i cant do it on a day cos im never on my own for 5 seconds....if im in a different room its Mum I need you ...huggy on the sofa, watch this do this do that ..he will ask me a question and before ive answered he changes the subject and asks something else, everything is a cunning ploy to get me into his world 100 % of the time. do this mum do that mum ......His need to control everything is epic when he isnt at school...does anyone else find that ? If i say something like shall we go out and have some fresh air he says something like "oh we wont go to the playground " which we always do ...we always do what he wants ...yet he doesnt seem to see that .........If i say anything that he disagrees with he stomps off saying ive been mean and goes mad ...last night he wanted the remote from the tv and becuase i was holding it, he went nuts and slapped and punched me...i have no clue how to stop him ...i tried to keep calm and said please dont hit, it means nothing ...so i locked all the childrens tv channels but i have to be careful cos when we start on this kind of pattern he does something like throw all my books out the window ..saying i destroyed his stuff so he will do it to me ...theres moments where i just dont recognise him...other times he is so lovely ...

i dont know why ..but it must be sensory?? ...someone on here will know ....

HI Claire i completly understand how hard it is to change the way you percieve it...my son was diagnosed jan 2007 after 2 years of assessments and he has been discharged from hospital with a "he is progressing and presenting as you would expect for severe ASD " and im still waiting for any help in terms of a autism course to attend for me to try get my head around how i deal with him , i struggle to keep my patience , even though i know he really cant help it. im just so tired ....and my son is incredibly compliant when anyone else is around ask he says to me people will think he is a freak if he doesnt try and conform ....but this means huge problems when we are away from anyone else and when people eventually spend time with us they see he cant maintain it for very long. Many of my freinds who actually i dont see much anymore because i got sick of hearing , "youre just not hard enough on him.....give him a time out...shut him in his bedroom, sit him on the naughty step" all of which i knew would make things much work and i had tried when he was much younger only to see how much worse they made things.....and also being told that M is just like there son .....well my son does this and my son does that ...thats not unusual....ive given up trying to talk about it with other people away from this board. My son constantly throws himself against the sofa and spends 70 % of his day naked ...in a blanket if he can ....humming , buzzing, flicking, snapping, climbing doorframes. jumping on the floor ....i cant stop him.nor should i try maybe but i would like to understand more how and what i say impacts him ..but it takes every ounce of energy to keep calm ....none of us have superpowers and we all have good days and bad days, and i always think i mustnt cling on to how bad it went yesterday but try and deal with it better tomorrow... i might shed a few tears once m is in bed cos the guilt is enormous though isnt it...but tomorrow a new day

OMG ! ME TOO mines only 6 going on 30.....he is exactly like this i feel like i live with a teenager !! i have to listen to everything he says 100 % of the time, alot of it he repeats and i just cant look enthusiastic which makes matters worse,

omg me too, i had a terrible day too....was it a full mooon....these holidays are impossible arent they not helped by the fact i have no money to go anywhere and it feels like unless M is out learning, exploring, feeding of knowledge from 7am till 11pm then he gets beside himself and turns on me....he has these extended periods of time where he goes literally hyper mental , running around jumping on the sofa, and charging at me....and saying the exact opposite of what i say , its at these times he frightens me cos i cant control him at all, he laughs in my face and turns into a really unpleasant little person . .. not a minute goes by when he doesnt command my attention in these schools holidays its mummy look at this , mummy i need you , mummy come quick, hes only happy if i sit with him all day every day ...he doesnt sleep alone , go to the toilet alone... so when he goes hyper crazy its usually when i am most tired and i just cant cope ......i noticed yesterday after like an hour of it , he said sorry , of course i was run ragged and near to tears myself and i said something mean, like You dont really mean you are sorry cos if you were you wouldnt do it ...well he went berserk ......and it was like red rag to a bull ....he was beside himself with anger at me.....of course ...and i felt terrible , i tried to console him and i was in tears .....he wouldnt give me a hug cos he wanted to stare at my face ......he thought i was laughing at him not crying .....hes 6 now and i feel like times are getting harder .....we ve just been to stay with freinds who he loves to bits ...but he spent the whole time trying to pull me out of the situation with them and to go play "alone " in the bedrooom with him .......when they spoke to him he just totally ignored them , it was so hard. ....nice to know we are all feeling the pressure together though ...if it wasnt for talking to you guys, id have no one who understood

this is my house exactly , my son wont leave me alone for a second . i go to the bathroom he comes with me, i tidy , he messes immediatly, hes non stop all day ..im exhausted and only two weeks into the holiday .....at least we are all in the same boat eh !

i just got some vouchers from holiday family fund .....u can use them for ferries, attractions like alton towers flights to see freinds ....the only problem is you have to use your credit card and then you get it back or something like that ....but i need to go to my local thomas cook to clarify, they seem awfully expensive though everything they offer ...

Hello its interesting reading what you say here. I am a single parent and i fund my sons private school with his DLA, he is in a small class of 15 and he has known them all since he was three but in one years time the fees go way beyond my affordability. He cannot cope with change at all , if one new person comes into the group he doesnt cope with them at all. He is diagnosed severe ASD & ADHD and very bright for his age with an amazing memory. I have no clue how to start on this road of approaching LEA, who do you approach first?

Ive contacted CAB locally waiting to hear from them. I got 250 pound for my sons summer outings from the family fund today which went into my bank and covered the bank costs and unpaid bills. devastated i cant use it for whats its meant to be for. My son! Like you suggested I contacted university and im waiting to hear from them too. I am going to complain about this wherever I can as its disgusting. If i sat around like a slob drinking vodka all day they would probably leave me alone like you say but im floggin my guts out trying to stand some chance of improving life in the future for us both and they do this. My family live over 30 miles away and have no transport , i do not have the petrol money to get over to them , thats why im alone on this one. Thanks for all your kind words everyone

ooh i pressed send before i meant too i meant to say ... i did a debt plan with cccs ....online but ive it said they couldnt work out a plan as i had such a lot more going out than coming in ..and no spare income....im not worrying becuase like you say there is no point, it wont change matters, as long as i can keep a roof over my head how do they help in terms of low cost consolidation , i thooght that was a bad idea

Hello ..and thanks again for your supportive reply , i cant borrow off family they have nothing to lend lol I submitted a request for a budgeting loan yesterday , my discretionary housing payment request has been in for 8 weeks and ive heard nothing ...this on top of having my HB suspended....

thanks folks for all your replys much appreciated ...i remember i have 2000 nectar points so i can get something ...in terms of food. Ive written a letter to MP and the rent service, i rang my bank they (lloyds) not interested at all , 20 pound a day charges tough they said ..i should get housing benefit but like i said its been stopped cos they say i shouldnt have it , i cant claim carers cos im a student but i dont have 21 hours of supervised study local housing is non existant in my area thanks so much for replys .

he will be heading for the tattoo parlour when hes older then lol ... if he likes pain i mean LOL

sent message to university ....and also filled in forms for crisis loan ..not sure what else to do ....have �5 in my pocket to last till sunday...got letter from bank today they are chargin me 20 quid a day for going over my agreed overdraft becuse i didnt get the housing benefit payment through this week ....