janb55

thank you so much....i think you are right ... not the right time just yet.... i just felt so positive for the first time in quite a few years having found a potential explanation ...a chink of light before all this began... his handwriting has always been pretty much illegible ( as was mine...actually remember at a strict.. high achieving school i went to that i was kept in one lunchtime a week to "get it right" ) by the time he reached high school i was asking for advice and they were very unhelpful and blaming tom for not trying hard enough...i remember saying .. it's not that he won't do it.. it's because he can't .... he also has a coat that when he did ever venture out to the shop and back he wore come rain or shine ... his pockets were totally stuffed with things he needed /wanted to know he had with him ... his pockets looked like saddlebags on a donkey... he called it his OCD...he also .. as has his youngest brother (28) has incredibly sensitive eyes ... he wears sunglasses all year...as do i actually !?!?!?! when he was admitted he had multiple and i mean multiple styes... which cleared up while he was in there but a bit bubbly again now though he has an appointment at the end of the month.. i can't understand what has happened between his girlfriend and i ... i have always respected my sons' partners and at the hospital i made a point of letting staff know that she is 'family' ... more than just a girlfriend... a partner of ten years... as visiting was anytime but family only ...during the darkest days we were solid... when one of us broke down... briefly.. the other immediately comforted and calmed the situation... but as he started to get better i started to feel as if some sort of competition developed... important things and trivial things ... she had to have the last word which was often quite daft and she would qualify it by saying sooo many times "if that makes sense"... which it didn't ....or "not being funny but..." yesterday we exchanged texts ... while he was in hospital she removed his beer supply from their room... her dad is going to pick it up but the only place to store it is in my study.... but when i was in their room talking to him i noticed a stock of wine... vodka and other stuff... hers not his ... ( she doesn't drink every day.. though goes out on the razz with girlfriends now and again and i can hear her being sick the next morning) so i asked if she could please take that out too... she said "don't think he'll touch it .. but sure" and it just went downhill from there ... i thought least said...soonest mended although i really wanted to stick up for myself but... as he has had no income for maybe a couple of years... she has bought his beer and tobacco ... eventually when he wasn't strong enough to go out she gave him her card to get a tesco home deliveries.!!! ..must have cost between £50 - £70 a week ... far more than she contributes to the house.... she told me i need to do this ...i need to do that ... i have said we need to encourage him to gradually leave their room ...she agreed yet she had a new computer game delivered for him ...i had the devil's own job to tear him away from it to come and eat and go to a dr's appointment yesterday i intended cooking pork chops new potatoes etc the other eveing and she had brought in family size bags of crisps and snacks which he munched till he wasn't hungry...... anyway ... becoming very aware that i am moaning ... completely off the subject of aspergers... but i appreciate both your advice and support... will get him well ..physically... read through the posts here ... and return to the subject when it is appropriate... thanks for listening ! jan

i would appreciate any advice...help...support for my son because so much has happened in the last month... the situation has escalated so quickly ... i think it may be easiest to state dates and events to clarify what has happened my son ... and his girlfriend.. live with me. i have tried to get help for him for ?? years... he lost his job 5-6 years ago ,,, treated very badly .. second son of four... spends all day every day in his bedroom.. smoking.. drinking and gradually restricted his eating to almost nothing friday may 1st i was staying with my son in essex for the bank holiday weekend ... i live on the isle of wight...and i was speaking with my friend on the telephone... her teenage son is awaiting assessment on the autistic spectrum and things she told me about him started alarm bells ringing in my head ... i couldn't speak...she knew i was worried about my son and i managed to say ??/ oh my goodness ...sounds like tom....and she said but he is a fully functioning adult isn't he? and for maybe the first time i blurted out... no.. he's not... i spent the day on the internet and telephone trying to find out more and many of the symptoms...characteristics of aspergers describe tom to a tee...i have made notes on articles etc but haven't had chance to go back to them as events took over... highly intelligent..... terrible handwriting... not a sporty bone in his body ... socially ?? awkward...always wanted to be included in the adult company and conversations not the children ... knew every flag of the world... lots of things that i need to re read now... i felt sooo positive and spoke to a lovely lady on an advice line and she recommended a book called Asperger Syndrome and Alcohol... i had been desperate to help him ....downloaded the kindle edition and it is possibly what saved his life... sunday may 3rd / monday 4th i drove back from essex got home in the evening ...decided i would broach the subject when i could because he is smart and has made no secret that he is a bit OCD ...mentions it often ... again not diagnosed....so he is open and aware of things that affect people..i didn't see him on the monday tuesday may 5th deliberately sat in my study so that i would be able to hear him as his bedroom is next door... when i heard him moving around i went in and asked can we talk ?l he wanted to sleep on but i said ok but lets talk later ... tried again later ...laid on his bed with him and started explaining but could tell he wasn't well... i pretty much begged him to let me get help but he said no...cut to the chase.. when his partner arrived i said we HAD to do something ... she said he would hate us if we did and i said ..well he'll have to hate me and i dialled 999.. paramedics arrived while i was still on the phone... checked bp etc and they looked ?? gravely concerned said options were .. hospital or...and i just blurted yes..hospital... actually felt relieved that he was going to get some help... thursday may 7th by thursday he was in intensive care ... all happened so quickly .. he deteriorated and was sedated and put on life support... because his lungs failed...his was in heart failure...they had the kidney filtration machine on stand by... he was diagnosed with sepsis ... life threatening ...total body septic shock... some infection ...treated for chest infection / pneumonia and the consultant warned us that in his 25 years experience no one in tom's state had ever recovered... but they would do EVERYTHING they could for him ... and oh my goodness they did... they pumped him full of so many things ...a list as long as your arm....blood transfusion ... platelets ...the lot friday may 8th just got worse and worse ... the sepsis was "raging" through him.. his temperature went above 40 degrees ... and the consultant told us "he will die" his brother came from essex... his youngest brother who lives in texas flew home... and family came to see him... it was totally hideous ... that is the only word i can use to describe it.. i was in absolute terror of my phone ringing during the night... then dreaded what thy would tell us the next morning.. he had to have his chest drained as his right lung had collapsed ... a routine procedure but on a high risk patient as he was ?? an empty shell... his platelet count ... which is what makes the blood clot had been 14 when he was admitted ... normal is 140 + ..it fell to 3 and then to 1 .... so the doctor told us there was a real risk of him just bleeding .... sometime after that ... can't remember what day he had to have another chest drain the other side which was in a more difficult position .... but the critical 24 -48 hour period passed and he was still alive... temperature kept spiking and infection markers raised ... but gradually... very gradually we started getting good news... might lose the tips of some toes because the circulation had been sending everything to try and protect his organs.... they dragged him back ..... overwhelmed and in awe of the ICU nurses and the NHS.... sunday may 17th he had been moved from a separate room to the ICU ward i think the day before and we walked in that morning and he was off the ventilalor !!!!!!!! wonderful wonderful surprise ... the dates after this are blurred but he then spent about a week on the cardiac unit ... diagnosed with dilated cardiomyopathy... his heart is damaged from alcohol ... so he is on medication... he was discharged last friday ... so now i can resume and revisit my thoughts on aspergers.... don't now where to start yet ...still reeling ... but he is back to spending the day in his room... although he is still poorly he is soooooo much better than he was... he has started eating three times a day... on special high nourishment milkshakes and takes vitamins ... but he is alive... not living.. the irony is that his partner is a learning support assistant and works with children who have aspergers... she doesn't agree with me ...she says she can tell by looking at her groups and recognises who has aspergers... wasn't happy when i talked about it at the hospital... yesterday she ordered a tesco home delivery of apple juice etc but there was a computer game for him also... which will keep him in his room ... she says we don't need advice..i disagree... any info ..suggestions..anything ...greatly appreciated.... thanks if you've managed to plough through this .....at a bit of a loss at the moment what to do / what not do for the best... thanks ..jan apologies .. just realised i didn't even say hello...hello !