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allsetuk

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Everything posted by allsetuk

  1. Hi , I just wondered what luck, if any people were getting with the council tax reduction for disabled children, I recently moved from one LA to another LA,the first offered me a reduction being a single parent as well as 25 % extra/reduced banding becuase of my ASD son, but the new LA has refused saying he doesnt have a wheelchair or special fixtures in the house. Its very confusing...They have also refused my request for a Carers need for assessment saying that becuase my son isnt statemented I dont fit the criteria.
  2. Thank u mosey, no i dont have any help , have very little family & they live 30 miles away and dont drive and cant cope.It really is so hard , I cant walk away as little man follows me all the time..its so sad..and without patience your right, it all seem so helpless...its hard to keep calm...
  3. i totally understand what you say here, all of you. My son is just 7, and has been on school holidays since July 9th, i took two weeks off work, I am a single parent and I have done nothing but cry, im so exhausted, im meant to go to work tomorrow and i dont feel like i can function, i feel like im just gonna cry if anyone speaks to me......ive had to borrow money to send him to childcare ....which i know will be stressful........I feel like he is 17 not 7, if he isnt shouting,banging on the floor, jumping on sofas, thrashing against the sofas, ignoring me completley, then he is agressive, pinching me, trying to rip the skin off my arms, attacking me , controlling and hurtful, wont reason, wont talk, licking me if i sit down , jumping on me to make me sit down, inappropriate behaviour, trying to escape , running off , i feel like im walking on eggshells from 6am -10pm, i cant have a discussion as everything gets misinterpreted, unless i talk about pokemon, which he has learnt entirely about in the last two weeks and i am getting shouted at if i dont understand all the evolving and in the correct order ........he gets so angry so quick, then hates himself and has started turning on himself, hitting himself for failure....i despair , i really do... the thing is he is a lovely bright boy and has loads of friends but he hides all this from school so when he is on holidays he goes nuts, i just dont know how to communicate with him I cant understand why we get no help, i made a complaint to social services, still nothing...family fund have got a delay on payments so no help for holiday or outings...its like if he isnt busy learning constantly out the house he is a monster but he doesnt want to go out, the clash between aspergers and adhd is really being felt in this house.
  4. thank you for your advice, ive contacted the JET people, got some forms. and the parents partnership who actually just reduced me to tears, they were rude and hostile and seemed annoyed with me for having my son in an independant school. Juat said they cant help me and theres ABSOLUTLY no reason he would crumble in a state school....she wouldnt even listen to me. Said they cant help. She didnt want to hear that the only reason he is managing is because of the school he is in. the Autism inclusion officer replied to say he cant have a statement because his behavior is excellent and academic ability high. The same one who told me that this week nearly all her Aspergers children are facing exclusion.....if the system is working so well how come children are being excluded left right and centre, that is if they even go to school at all. Thanks everyone
  5. Hey I just wondered if anyone can guide me, My son 6 has severe ASD , as we know they are all individuals and he is a real rule follower and only social with the 14 children he goes to school with if Im lucky, more like they have grown up with him and are used to his individuality ! He is in a very structured independant music school (as he is very musical )that I have strived and struggled to pay for putting everything else to one side, but now the fees are going up , not so much but enough to mean I simply cannot do it. I have no clue where to start to see if I can get any help to meet the cost, He would not respond well to a change and I have been advised by everyone that is involved with him that the change could be reallly detrimental , and even the autism inclusion officer cannot suggest an alternative. Has anyone a clue about these things, id be so grateful if someone knows of anywhere you can go for help Thanks <'>
  6. HI my son, has taken something called VEG EPA, which i think may be similar to MOR EPA, i was told the dha cancels out the EPA and to make sure I had a DHA Free product which is really hard to find, i have seen a massive improvement in focus and concentration. also my son couldnt take tablet, these you can cut open and massage into skin when asleep.
  7. HI my son, has taken something called VEG EPA, which i think may be similar to MOR EPA, i was told the dha cancels out the EPA and to make sure I had a DHA Free product which is really hard to find, i have seen a massive improvement in focus and concentration. also my son couldnt take tablet, these you can cut open and massage into skin when asleep.
  8. Why does it worry me so much ???? it worrys me becuase my son is a perfectionist and tries incredibly hard to hold it all together at school, it worries me as i havent the strength to start fighting in a tribunal and i have heard horror stories, from many people on here who are already vunerable and having to fight constantly to get any help at all, i also have no clue if in fact if it is just a letter or a series of questions in a dla style questionnaire. its just a load more to worry about when im already at my wits end!!
  9. - I am already very very grateful for the one night of overnight respite my middle son gets each week, but even that didn't stop my family breaking up. aww nikki im sorry to hear this, as a single parent , i know how hard it is to go it alone, but to cope with a break up to must be really hard...when i have the mental strength i am going to take on my social services and file a formal complaint , and bring in mp's etc ....i can only just deal with one thing at a time at mo, or i want to crawl into a cupboard d x
  10. Im feeling really freaked out, I sent of my DLA renewal for my son aged 6 half, who has had DLA for coming up 2 years, after diagnosis. They have written to me this morning saying they have approached school for a report , when my sons teacher had already written a letter of support that was included in the DLA paperwork when i sent it back. why have they done this ? Does anyone know? if school mess this up , by writing that everything is fine becuase he tries really hard to hide his true feelings as he is petrified of breaking rules. i have been ill for about 3 months and at the end of my tether, autism just seems to have taken over every minute of every day and I cannot understand why they have written to school for a report when they have got one , my son behaves very differently at school than at home and the reason he can just about cope at school is because of the 100% colling off time i give him. But his teacher already explained all his issues with food, repetition, work, literal understanding, misunderstanding, pressure on himself to get everything right etc School dont know that the second he leaves he will lie down and cry cos his stomach hurts when he walks , school dont know that we are prisinors in our home cos he doesn't want to go anywhere , school dont know that i cant get him to wash his hands ever , or it takes 30 minutes of tears to brush his teeth just once a day. School dont know it takes 2 hours to get him dressed or he needs melatonin to get to sleep , or that i have to sleep next to him as if he even senses that he has been alone in a room for a second he will scream and talk about nothing else for days. Sorry for spelling mistakes im so upset
  11. i would love social services to even respond to my request for help a year ago. after repeated requests for help, they do not respond and are very hostile when approached , i am disgusted
  12. this post really made me cry, the idea of him countin his steps every day and that being so important that he cant enjoy his lunch, i wonder sometimes, do schools want to make any effort at all ...but im glad you are making positive steps with the senco. i hear every thing you are all saying and my son age 6 has said all these things many times, isnt it heartwrenching. All we want to do is help , and we must never overlook the smallest things, its like think and rethink !
  13. any chance mods could delete the other two new topics, for some unknown reason this same topic has come up three times ...thanks thanks for reply mumble and so sorry to hear that you couldnt go to lapland
  14. ok , does anyone have any ideas for travel insurance where to go, apparently as aspergers often is related to anxiety ...no ones wants to cover it anymore !!! whats experience does anyone else have of this ..... just had a really fustrating experience rang a so called pre medical condition friendly insurance company, that were meant to be experts ......and they didnt know what it was, they had to google it!!!!!! grrr so frustated
  15. same here, my son got diagnosis when he was 4 and since then we were just left to deal with it, took me 18 months to get in to see CAHMS. after diagnosis i was sent a reading list and discharged , every time ive tried to engage them in dialogue they have said my son is progressing as expected and thats that. Other than that not one iota of help , the physchologist said to ring him when my son realises he is wierd but for now he isnt "bad enough " to be seen and I should be glad he isnt coming at me with a knife !!!! Six months ago I contacted social services for help, so far ive been completly ignored despite repeated requests. shocking the whole thing is shocking Im appaulled by it all
  16. allsetuk

    Goodbye

    i dont understand this forum, why do people keep leaving ?
  17. i dont know if anyone was thinking of going to the every disabled matters march in london oct 4th , i would have like to but struggling to get there and afford it. but i just got an email saying that The Family Fund is keen to help all families with disabled children to attend Keep the Promise. If you know a family that would like to come but needs financial or other help to do so, please ask them to sign up on the Family Fund's website at http://www.familyfund.org.uk All families that join the Family Fund's group will be put in a draw for �250 for a Comet gift card or towards a holiday. thats pretty cool , if anyones struggling and wants to go, sounds good
  18. i get this constantly, but i feel bad not watching tv with him, but when im there he either rolls on me, sits on me, or generally tries to squash me whilst asking 100 questions and then if i walk off he says i dont want to have fun with him and its just an endless cycle of why , what for , why dont you know, what do you know , how do you know, i wish i knew as much as you !!!!
  19. same with my son , on first day back this week , he ate a plate of tuna, cheese and cucumber for lunch that was it , this was going on last term when his teacher was off sick and no one was watching over them at lunch. Its because he doesn't want to use his knife and doesn't want to eat anything thats hard or crunchy.Its all about sensory issues and The thing is the school dont realise what tricks he will do to do things "his way" and then he is starving all day. school dont seem to recognise his As at all
  20. mines exactly the same will only get dressed if he knows he is going out the door, will spend hours naked , i mean hours. cant tolerate the slightest bit of water anywhere , a single drop clothes will come off, tries to do it at other peoples houses but so far keeps them on when out. he is 6
  21. sounds amazing , is it abroad?
  22. Persistance is the word , constant monologue over this years obsession, last summer it was ben 10 , now its phineus and ferb. And he is constantly telling me over and over and over and over , did you see , come see, come look , its so funny, ohh you missed it, why didnt you watch, you dont love me, you want me to leave, come now I said NOW, what are you doing, you didnt do as i say, why cant i be the boss of you. This is the favourite saying this year. Why cant i be the boss of you. if i dont sound interested he gets madder and madder with me
  23. I cant even get social services to return my call /email for an assessment. I agree spending all your time having to fill forms in and prove that you are in need of services. being discharged from the hospital when your son is 5 and told to come back when he realises he is "wierd" I feel like im hitting my head against a brick wall everywhere i turn there is some sort of huge obstacle and financially im on my knees .
  24. The email said we (PANORAMA)should look into the lack of support that you, and others in your position, are getting. Looking after any youngster is tough enough, but, as you say, your children need to be occupied and looked after at all times. if there are related issues which you also feel strongly about, then please do let me know im thinking education issue/ carers issues/ social services and all the struggles we face and see what other issues people want to raise. specific stories would be good about the terrible struggles
  25. meant to say thats what they are intending on doing , a specific programme
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