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.

Ive just re read the letter again and they are going to send out a Limited Capability for work questionairre and then they will decide if he needs to have an ATOS assessment which he has to attend if he is required one...good luck with that one me thinks lol

I recieved a letter from DWP today telling me that kierans(26) incapacity is changing to ESA and they will ring me in two weeks to discuss this.If ESA assessing goes the same as my husbands did im in trouble.He had to go and have the said medicals husbands is physical disability and we arae in the process of appeal which as been ongoing since september 2012 so he s only actually getting jsa rate until tribunal date like many others are.Kieran rarely ever leaves the house very rarely talks to anyone he doesnt knoiw with one word answers yes or no there is no way that he would get to one of these medical assessment things and there is no way he would ever be able to go out to work.Surely ther must be other criterias for assessing things like autism and aspergers or other related conditions.As anyone else already gone through the transition already then i know what to expect

I agree with what as been said in all honesty christmas can be a nightmare a lot of it is i think is the unknown and the anticipation and the different in change of situation. Kieran from be little as never known how to react to recieving christmas gifts which before he had his diagnosis im sure he offended with people with his "i didnt want that" "what you bought me that for" because he has money of his own and buys things himself throughout the year i usually go for things that are in line with his latest interest at the time which usually works.

Well christmas eve and already had a running battle with kieran over something simple that nts take in thier stride.Im not getting into running arguments with him on christmas eve so ive decided in the new year that i must get some help with him or for him.Im hoping that you lovely people will point me in the right direction to access help for a 26 year old,Biggest stumbling block 1 doesnt leave the house.would care for carers be any good to start with.or something like that ?

Kieran loves christmas from the first of december right up untill christmas day he is so hyped about it but he doesnt get it.He has a ritual from being little he gets up early and if no one else gets up he will make sounds and noise until we do, presents given out from under the tree excitement but once presents are open its like theres something really big missing i often ask him what else he expects and he says he doesnt know not more presents but just something more seems like all the hype then a massive anticlimax for him .But my family understand he doesnt do thank you for the presents its usually "thats sad" because he doesnt know what he s expected to say.We have a quiet christmas at home me his dad and his three brothers because he doesnt do out and doesnt like socialising.The only thing we do ask of him on christmas day is that he give his xbox a miss for one day.

I must say kieran is the same with his steam trains he has quite a few now and the same as yourself he doesnt play with them (i got told off by my mums neighbour who is in his sixties when i said you play with steam trains lol) If we had the space for a lay out he would use it on a regular basis but unfortunately we havent so his are in the original boxes in a large plastic box under the stairs along with the scalextric and cars that he doesnt use either due to lack of room we could find the room but by the time we get it out and set up he s fed up of waiting he doesnt have a lot of patience he wants things doing like yesterday .He is pretty good at knowing what to buy people usually but this year he s stumped so i just decided what i think theyd like and get the money off him otherwise they wouldnt get anything it all

Thank you for your your replys it makes complete sense what you say as i thought it would.I maybe should have put in my post is that kieran is 26 so any thing he buys he buys it himself.which makes it even more difficult to get him presents .I do actually stop him buying anything in november if i can.Thats easier because he does not got out himself he is a bit agrophobic and doesnt like the outside world .He loves christmas and the whole present giving but once the presents have been opened its like an anti climax for him as if there is something else not in present form but something.Because he is is what shall i say behind in his development for his actual age i usually try to get him things to do with his current obsessions we ve got angry birds at the minute or the olympics.he still likes his thomas the tank engine and Fi Fi flower tots of all things and toy story but he likes what he likes.The good thing is the people who buy him presents they usually ask what to get him know that because he doesnt know how to react when given a gift they dont take offence when there is no thank you or wow just what i wanted he justs place it on the pile with the rest.And as mentioned he doesnt part with anything we ve got games magazines from ages ago and car magazines why he s not going to read them again.

I am just sat here wondering how to approach the move of last years christmas gifts upstairs without world war 3 . Then i had a thought and i wonder how many of your children and adolecents are the same. Kieran has lots of things he likes things but doesnt use them he s got two dvds he bought about 3 months ago still in cellophane in the bags on his pile of things in their place hence the christmas presents two not ecen out the box is a typical trait of autism or aspergers?

I know ive posted about this before but my patience is being tested to the limit.Kierans world is his xbox he lives breathes talks it untill boredom factor.He gets so angry with his games screaming and shouting at them now the question is here what as anyone come up with in the same situation.Removing the x box was an option but i know kieran and he will go on and on about it just like he did when it was broken a week.We ve explained to him that if the games annoying him to stop playinging it and do something else instead which he did agree to only not to keep to it and ive lso got the added problem that as christmas fast approaches he gets more and more wound up is there any natural remedy that would make him any calmer i dont want to go down the medication road which would be hard as he doesnt leave the house so i couldnt get him to the drs lol and at 26 and 6 ft 2 id be hard pressed to drag him kicking and screaming but sometimes i am so tempted .The problem in kierans world is winning isnt everything its the only thing but i suppose thats the autistic trait not grasping the point of a game

i was just wondering if anyone feels that one or more of their younger children have missed out because an elder sibling is on the spectrum? why i am asking is my son 23 is 3 years younger than my son on the spectrum and has issues of his own at the minute and i feel maybe he missed out on the attention that my others had when they were little becuase of kieran Kieran talks continual and never shuts up talking always talk at not to my youngest when sometimes he s not interested in the slightest what he has to say usually about some game or some new car coming out.i do feel sometimes that he hasnt had the attention that maybe he needed and he is paying for it now as kieran talk up all what should have been his childhood time he has never come out and said it but i think he thinks it,evrything has to be done on kierans terms and kierans topic of conversation even though we try to make more than a one way conversation