lynyona

Thank you for your reply I must confess I wasn't sure what the word proprioception meant until I put it in google reading the definition it made sense to me .Excuse me for my ignorance but I presume that in his mind it makes sense to him to and im hoping that he will just turn it around somehow like he did before .He doesn't like heavy blankets only his quilt on his bed

Kieran is 28 now and when he was 9 or ten he had issues wouldn't sleep in his own bedroom we decorated with things he liked still nothing he d walk around until 4 in the morning crying so to let the household get some sleep we put a mattress on our bedroom floor which he slept on till we moved here which is over 15 years ago quite happy with his new bedroom. On Friday he was walking around until 3 o clock and I went out to see what the matter was and he said he couldn't sleep in his bedroom when I asked him why he said he didn't know he just couldn't and could he sleep on the sofa which he did three days on he is still sleeping on the sofa and he doesn't know why we ve explained he cant sleep on the sofa forever its not good for his back and it ll be getting cold soon he accepts that but chooses to ignore it I cannot possibly think what as made him go back there after all this time...was it maybe a spider in his room a bad dream..im at a loss but im not going to let him sleep on the sofa forever

Just want to put something out there to see who can relate to this. I have just got a job as a Support worker at a Specialist college but to support in residential accommodation with students with varying ASD. We have been in to the college training this week and have met some of the students been told about some students some with Downs Syndrome or severe Learning Disabilities . While I wont go in to Kieran only briefly to see where I am coming from . He wasn't diagnosed until nearly 18 years old so missed out on all the help that would have been there sooner he is now 27 soon 28 with only our parental support .I went into this with good intentions to see how Kieran struggles and to maybe learn something while doing something worthwhile .I suddenly realised that maybe I am not emotionally ready for something like this as I will not be able to detach myself from it .I see these pupil ages from 16 to 23 being tutored in things like learning life skills and being independent IT serving in the student canteen which is brilliant and the slightest thing they achieve is truly an achievement they go to lessons socialise in the common room with each other and it makes me sad just watching them do these things which Kieran could have been maybe doing if id not just plodded along without making the noises and challenging and I sometimes feel that I have failed him as a parent.. which I shouldn't he is cared for looked after and provide for.. but is that just because I am now comparing the students I see to what I see and Kieran and what could have maybe been .I spoke with another lady on the training about it and she is a firm believer that what will be will be so he may never have progressed the way these students have, I will never know..Don't get me wrong I am focusing on the positive and going to go ahead and stick with it but if its to much for me I will have to walk away . If kierans had a bad day which isn't often how will I feel if I come home and have had a bad day at work and as I t looks like my husband will be a stay at home husband while I work will I be strong enough?

Thank you for your reply I do totally agree with what your saying but it is difficult ,,he doesn't ever leave the house he as a friend that comes and stays sometimes who he was at school with...he likes to watch sky sports news its just a organised loop if he wasn't on his xbox he d go upstairs on his ps 3 he does have a keen interest in steam trains and will watch his dvds now and again .....we have no input from anywhere with him so we just fly solo and make the best of a bad situation which I always liken to the film groundhog day

I am just wondering on a parents point of view is on obsessions with gaming a good thing or a bad thing and could you share your views and experiences with me .My son is 27 and his world is gaming mainly xbox 360 I don't know if I still don't understand the autistic mind but as much as he loves his gaming I cannot understand why he gets so angry with them shouting at the tv repeatedly to a point where I want to smash the xbox into pieces...you could understand it if he were losing but he does it when he is winning and he thinks its some conspiracy that he isn't allowed to play a specific game and the usual response is "take the cheats out"! ring ring why make games that your not allowed to play them and given the fact that he also has slight hearing loss this is very loud in a monotone drone. And Yes ive tried turnin the tv off telling him to play something else only leading to meltdown I don't think I ll ever get it and he always seems to be angry about everything

Thank you very much Nellie that information is very useful. Yes we do get dla for him low care and middle mobility .He is now 27 and he did go to a special school and only had the dx of being on the spectrum just before his 18th birthday were before he was only 9 years old I think when he got a statement of special needs .When he was younger he did use to run away if he got the opportunity but he now prefers to be in the safety of his own home where he rarely ventures out My mum moved house to years ago and he has never seen her new house.He would be unable to go out by himself as he as no sense of danger from traffic etc and if I am honest with myself he his a bit agoraphobic we wee told once to try and coax him out and let him go to the shop himself like that was going to ever happen id love it to have done but in reality an impossibility because of the anxiety he experiences of the outdoors.I will get a letter sent and see what happens it cant hurt to do so

we did about ?ooooo must be 4 years ago now they came out and did and assessment and said theyd be in touch soon I rang them a couple of times about it and they said they hadn't forgotten theyd be in touch soon gave it up as a bad job in the end

we haven't had a social worker or any involvement from anyone apart from ourselves the offer of any help wasn't ever made

Hi I was just wondering does anyone know if there are say care agencies that have carers that come into your home that are specifically trained in autism or challenging behaviour to be able to provide personal hygiene care showering etc ..and if someone can point me in the right direction where I can find out about this or a good starting point ive no idea

My son Kieran who is 27 is on the spectrum. His younger brother 24 doesn't cope very well with things in life he is NT. depression self worth issues relationships fall apart for no apparent reason. Looking back I always felt that because Kieran took so much of my time up when he was younger he missed out on what should have been his childhood time because Kieran always came first even today he does t is how it as to be unfortunately I try to divide my time to all my sons but they are all adults now and shouldn't need as much time as they have their own lives and are old enough to make their own decisions in their lives and make their own mistakes .My friend thinks I am being to hard on myself but I cant help wondering . So my youngest is on medication and been to see open minds for cognitive one to one therapy which he knows makes sense but cant put it into practice which makes me sad as nothing helps when all I want to do is scream get a grip. I am being a bit harsh here ..sorry for ranting I cant get over the feeling I am to blame

My son Kieran who is 27 is on the spectrum. His younger brother 24 doesn't cope very well with things in life he is NT. depression self worth issues relationships fall apart for no apparent reason. Looking back I always felt that because Kieran took so much of my time up when he was younger he missed out on what should have been his childhood time because Kieran always came first even today he does t is how it as to be unfortunately I try to divide my time to all my sons but they are all adults now and shouldn't need as much time as they have their own lives and are old enough to make their own decisions in their lives and make their own mistakes .My friend thinks I am being to hard on myself but I cant help wondering . So my youngest is on medication and been to see open minds for cognitive one to one therapy which he knows makes sense but cant put it into practice which makes me sad as nothing helps when all I want to do is scream get a grip. I am being a bit harsh here ..sorry for ranting I cant get over the feeling I am to blame

Special_talent 123 no he doesnt have speech therapy he had it when he was younger for a while since he left school at 16 we have had no help with anything for him he is 26 now.Saying that even if we had we d have had problems going to these things as he rarely leaves the house nowadays through anxiety issues lyndalou Could be right obviously his brothers arent always there when he asks for stuff he wants he does it with things like football games and he s mad about tennis and does it with players just giving us the first letters of the name and we are expected to know who he is talking about.Could also be a bit of laziness easier that way i dont know

Kieran has never been a very good talker because of slight hearing loss and his autism and it seems some times he is embarrased in some way to talk just recenctly he has become mor reliant on using first letters of words instead of the actual words eg he will say dont forget my ca ma s ga mas and das ma s ca s now i can decipher these words car mags games mags and drinks munchies crisps he is 26 it is okay when we know but we have to go through every word associated with the letter sometimes until we get it which he gets frustrated we ve said to him just say the words.Im not sure if it stems from his siblings questioning about why he wants for eg a certain game or not and fear of comment does anyone else have this or is there another reason why he does this .just seems trange that he s only started getting more regular and he is abbreviating most things when he can

What isnt helping either is the back log of appeals theyve got my husband is awaiting appeal for esa and been told it can take upto a year and i have just go the ESA questionairre to fill in for my son who has to go from incapacity beneit to ESA very soon i am dreading it becuase there is no way he d even get to the assessment going to crack on with that sometime today going to write what i need to first to make sure i havent missed anything before i fill it in. It is just getting ridiculous this Atos Situation.They are putting undue stress and financial hardship on the people that need it the most.

Im kierans appointee can you explain to me what this support group thing is all about my husband goes to this back to work support thing through ESA and if thats what it is i would sstill have difficulty with kieran has he doesnt leave the house and at 6ft 2 i cant really drag him out kicking and screaming .I think i will have to ring this atos place i might wait untill the benifits place ring me and i will put my questions to them first.