kathyanne Report post Posted February 13, 2011 Hi Im new on here, im so so sorry this is the longest thing ul probably read if you get through it, i just pray some one is out there that can help?? My son James is 21 now, from the age of 7-8 he would play in his room on his own with his guitar, or paint toy soldiers, some would call him the boy in the attic... I was a single teenage mum so didnt know any different and didnt know he was different to other kids. looking back he did some very strange things but i cant change how i felt and wanted him to be normal. i remember shouting at him in his early teens to open up and talk to me, but he always had a blank expresion and he never confided in me for anything. By 14 he was off the rails, so i thought... he stopped going to school and spent most of his time in his grandmas spare room with the curtains shut and earphones on, he would come out night in his hooded top, and not speak, he smoked a lot of canabis and listened to music all the time, i couldnt communicate with him. His moods were terrible and he always threatned to kill himself, he would fly off the handle and throw knives at the wall, i had two other children , was scared and didnt know what to do ?? when we went on holiday, he would sit alone on a table with a blank expresion on his face, ear phones in, i took him to the doctors, time after time from the age of 15.. he was refered to phsyc who basically told me.. hes just another statistic, lazy, hel be ok when he starts to help himself!! so, i belived that!! by 19, i never saw him, i had asked the authorities for help and he moved into a supported house where they had lots of rules. he was kicked out for breaking the rules 3 months later, he basically wouldnt socialise with the others and take part in the activities with them, he locked himself in his room, his personal hygeine was terrible. I went to the docs again.... he has to want to help himself is all i got:( His gran, whom james calls his guardian angel took him back in to her house, i couldnt cope, we thought he was rude, ignorant and lazy.. infact i thought james hated me.i would ring everyday, hes in his room, he only comes out at night shed tell me, he never talks.. same old story. I was offered a job in ED in NZ, so moved with my youngest son Adam and husband Nick,Perry my middle son was finishing off college and would be following soon to be with us. I saw james before i went, he didnt say a lot but he did turn up to our leaving party... he had the same old coat on he had had for 6 years, we couldnt get him to take it off?? and earphones in at my party.. how rude my dad said, i agreed, he smelt, i felt embarrased as we all had tried to help him... i now belived what the authorities were saying about him. so... i moved to NZ..... i missed him terribly though and would ring his gran every day.. same old story... hes in his room, hes depressed now kath she said, i cant get him out. eventually, evelyn, his gran had had enough and showed him the door, we payed a bond and got him a room in a rented house with some others , we thought this might help him, and he needed a supported enviroment. It was 18 months after i had moved to NZ and I was about to return to visit him and his brother. What a shock i got when i returned. 18 months had passed and i was so pleased to see him, james had turned up at my mums house to greet me, hi mum he said, ive missed you. im taking you away for a few days with grandma i said, a small holiday where we can all spend some time together and have fun, im taking your brother perry too... so we set off for blackpool the next day to go on the merrigo rounds and fair/ rollercoaster etc. when we got there i looked in his case... he had not packed any clean clothes and everything was unorganised. no tooth brush, smelly socks packed, it was terrible, i went out and bought him loads of new clothes but he wouldnt wear them... also he refused to eat with me mum and perry in our hotel... everyones looking at me he kept saying... when i did drag him downstairs to eat one night, he lost his appetite and looked around the room paranoid. lets go to the fair i said. we all went out.. we got to the fair ground and james nearly freaked out, he looked confused and put his hood up around his eyes, ear phones in again... i shouted at him... you ungrateful ###### i said.... then i stood back for a minute and something in my head snapped for the first time in 21 years.... oh my god mum i said.. watch him..... just observe him.... mum was a social worker and i was a nurse.... why hadnt we seen ??? what are you listening to i said on your earphones??? static he said... i opened his jacket and the earphones were not connected to anything.. he was listening to fresh air.....i sat him down, and from that moment on we realised he was wired up different.. he tried explaining to us that he didnt like being there, it was too much of a change and he felt out of his depth, i decided to get him back into his comfort zone and we set back off for our home town... maybe hes got asbergers syndrome my mum said.. i didnt know what that was .. i had 10 days left with him, to sort a doctors appointment out, get him on sicness benefit because he had been warned by income support that he would loose his dole because he refused to work on a busy shop floor as he said he got clostraphobic!!.... i managed to get him a phsch referal.... and my mum has moved him into hers for now. we also have a social worker for him....we have all read up on asbergers ... all the family and everyone agrees that it is ilke reading a book on him... however.... his social worker says he needs to come to appointments on his own and he refuses and stays in his room, he agrees to go with someone but his worker says that at 21 he needs to help himself... his worker has only refered him to an elderly day centre where elderly people go to play bingo... we are all bemused... a junior phsychologist saw him and assessed him and told him a senior phsychologist might assess him futher, but we havent heard a thing and that was 6 monts ago.. i have written to his social worker, gp , and phsych doctor and have got no where. James has no friends, cannot do simple tasks on his own, my mum is getting old and needs support with him, i cannot cope with him again as hes such hard work and cannot find a job to go back to in the uk to support us. He now very seldom comes out of his room, he always has the light off.he does play on the play station.. my mum says maybe 1 in every 4 days hell come down stairs to socialise. he steals alcohol when he can and gets out of his head, he dosnt know when to stop drinking, hes sensitive to light, noise, has few motor skills and gets confused with washing dressing personal hygeine, he cant operate a cooker and cant go shopping. hes very lonely and tells my mum hes a social misfit with no one to turn to. he feels totally unloved.......i speak to him every 2 days on the phone.. he says he wants to study, but college wont take him seriously.. he lost a job for weraing earphones at work when he was 17, and now hes lost all confidence....... What can i do.. where can i go to get him diagnosed... we need to know that there is something we can do for him as a family....this is turning into a nightmare... any help would be so much appreciated,Kat. Quote Share this post Link to post Share on other sites
sky Report post Posted February 13, 2011 this is terrible- i am no expert but its obvious to me that your son is on the spectrum -and felt so cross to read social worker said he had to go to appt on his own ! if it was me i would go to his gp INSIST he needs an assessment as he needs support and so do you. any good ringing the national autistic society for help?feel so cross you have been palmed off with 5the reasons for his behaviour you have-where are the professionals who should have picked this up?!!! Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted February 13, 2011 what you explained and described by your post get muddled confused daily living skills such washing dressing you said he sensitive to noise and light ( sensory issues) saying he has motor skills probs /difficulties that he can't do shopping and can't operate a cooker this all points high possibility of showing classic signs of being somewhere on spectrum the fact he likes being on his own in his bedroom isolation side of things keeping himself to himself and not having any friends is common situation for people on spectrum of all ages as socialing causes great anxiety the headphones wearing all time could be him trying to block out sounds/noises which causes him discomfort /pain and block out the world so he doesn't have to face it head on! people on spectrum struggle to cope and manage with change of any kind whether environment anything involving change causes stress and anxiety when you say you brought loads of clothes for him and he wouldn't wear them this maybe due to sensory issues of the texture of the type of clothing on his skin alot spectrum people need support and help with daily living skills. the frustration can build make him 'just fly off the handle' and the confusion this also make him desperate this is why he may have felt depressed leading to the comment ' i want kill myself' as i have come to that point myself he may take alcohol to block out the world like he does with his headphones to help him cope get through each day as feel like no one understands him he's on his own in his own little world! when he came to your leaving party he probably didn't say much ashigly pressured uncomfortable anxious situation him to social interact and communicate which he find hard and challenging anyway sounds like his obsessive hobby is play on his playstation this is common spectrum hobby as this helps him relax his comfort he goes as routine he does everyday! this situation has probably i guess grated weared you all down over the years with frustrations anger of unsolved situation not having a clear explaination of why the reasons help stuff make sense more than it is that's why probably snapped that day as been building up as lack support etc does take it's toll ov everyone involved! alot people come to same conclusion and judgement that lazy igornant and rude when he 14 years old he probably went off rails due to puberty hitting him and hidden struggles difficulties didn't help the situation added to it make it worse! the NAS can help get him out of his room and into the community build his confidence and get him practising he daily living skills he struggles with and finds difficult and also they help with college and employment too so many areas they can provide support for! i'm at the moment approaching practising daily living skills with my support worker they can help him use cooker go shopping etc XKLX Quote Share this post Link to post Share on other sites
lee2010 Report post Posted February 13, 2011 Everything you describe would definetly describe your son as been AS, its wrong that they should insist he goes on his own as this unlikely he will and certainly not without a lot of distress which is wrong. Unfortunately in my opinion they is a lot who work in the field ie social workers doctors etc who do not believe in AS or general mental health or believe they is any advantage been diagnosed. I hope your son gets the help he deserves as he has gone so long without it i can imagine life as been very hard on you both dealing with this which is only made worse by ignorance from some people. Quote Share this post Link to post Share on other sites
kathyanne Report post Posted February 13, 2011 Yes, I know, im very angry, he had a terrible time being bullied at school, and teachers always said he was the problem and no one else:( he eventually just refused to go and hes so intelligent too, ill have a look at the links provided in my inbox, thank you, i dont know if ill get anywhere as the social worker i have wrote to has ignored my letter up to now, howeever ill plod on and demand assesement from the GP and support, does anyonre know who i ask to get him referred to for assesement?? thanx, kat:) Quote Share this post Link to post Share on other sites
auldreekie Report post Posted February 14, 2011 What a nightmare you are/have been facing. Have you tried contacting OASIS? I found them very helpful, but am STILL waiting for a diagnosis from CAMHS. Seems both our sons have been let down by the system. I really hope your son gets the help he needs and finds peace with himself. Quote Share this post Link to post Share on other sites
kathyanne Report post Posted February 14, 2011 What a nightmare you are/have been facing. Have you tried contacting OASIS? I found them very helpful, but am STILL waiting for a diagnosis from CAMHS. Seems both our sons have been let down by the system. I really hope your son gets the help he needs and finds peace with himself. how long have you been waiting for?? what does OASIS stand for as when i google it all sorts of stuff come up?? he went for an appointment today for his sickness benefit with my dad where the doctor said basically im no expert but it dosnt look like u have autism to me, u are just depressed. at least you know your not mad. aghhhhhhhhhhh the man only got an hour with him and dosnt have to live with him, how can he make that assumption ?? Quote Share this post Link to post Share on other sites
auldreekie Report post Posted February 15, 2011 how long have you been waiting for?? what does OASIS stand for as when i google it all sorts of stuff come up?? he went for an appointment today for his sickness benefit with my dad where the doctor said basically im no expert but it dosnt look like u have autism to me, u are just depressed. at least you know your not mad. aghhhhhhhhhhh the man only got an hour with him and dosnt have to live with him, how can he make that assumption ?? Sorry, works in capitals - www.aspergersyndrome.org . Also get some Burts rescue remedy - good for calming down. Good luck! Quote Share this post Link to post Share on other sites
kathyanne Report post Posted February 15, 2011 Sorry, works in capitals - www.aspergersyndrome.org . Also get some Burts rescue remedy - good for calming down. Good luck! Thank you Quote Share this post Link to post Share on other sites
Shrinking Violet Report post Posted February 17, 2011 Kathy-Anne, It's been misspelt - it's OAASIS and it's the Office (for) Advice, Assistance (and) Support In Special (Needs) and their website can be found here Hope that helps, Sarah xxx Quote Share this post Link to post Share on other sites
auldreekie Report post Posted February 18, 2011 Yes, I've finally realised that - also it's Bach's Rescue Remedy! Apologies again. I don't mean to confuse anyone, it's a mixture of my brain, a keyboard that sticks and hurrying so that passing kids don't see what I'm typing. I'm sure most of you have been in that situation. Quote Share this post Link to post Share on other sites
