autistc son homeless sleeping rough and starving

[loulou]

Hi Florrie,

 

I'm glad that things are more positive. Stay strong <'>

 

Loulou x

[timelord]

hi florie, is there a local jigsaw gorup, they may be able to help, not sure about england, but here in scotland its normally up to the police or medical services to insist on someone being sectioned. thats what happened to our son, he finishe dup being sectioned, 3 years ago now, he has aspergers, and is now also suffering from paranoid scizhophrenia, our other son is bi - polar, and self harms

[florrie]

K en has sent urgent email to social services about the urgency of current situation because we need there input to make the housing work for J but there has been no reply yet and we need one by wednesday when he gets his interview for it.

[Kathryn]

Hi Florrie,

 

They sound like our social services. It might be a good idea for K to ring them tomorrow if you've still heard nothing from them. Emails don't always get picked up straight away, and a phone call is less easy to ignore! Can J's GP help by ringing them as well, perhaps?

 

I hope all goes well on Wednesday.

 

K

[florrie]

Thanks for all kind and supportive messages it really helps

 

there is good news and bad news, the good news is Jake has fgot a one bedroom flat for which I am extremely grateful, he still does not have benfits sorted though and not whether he is going to be able to cope but we can keep an eye on that.

 

The bad new is the doctors appointment went extremely badly so badly in fact K won't even tell me the details because he doesn't want to talk about it was so awful, the only bit of info I could glean is that doctor refused to look at him and just talked non stop so that J couldn't follow anything he said, he was already stressed out about the appointment and we managed to get him down there by saying doctor would help him get somewhere to live. Jake has been with me last few days and has been ok if stressed no more violent incidents meltdowns i think people refer to them as, difficult to cope with when they are children but terrifying when they are 18, he was really relieved he was getting somewhere to live so I think that kept him in more stable frame of mind, although he doesn't really talk to me except to be rude but he can't help it, so it is very unfortunate the doctor appointment has gone wrong, he has referred him to cmht but i doubt we will be able to get J to go and to be honest my experience of them was that they don't have a clue, and that can make things worse which is usually what happens. W were lucky enough to have a brilliant psychologist and a paediatrician when he was young who really understood what asd are without being patronising. so not really sure what to do about that, but i am very grateful that he has got somewhere to live that is a first step.

 

thanks everyone who has been understanding and supportive i can't tell you how much that means.

Edited March 1, 2006 by florrie

[timelord]

why wont theyu section your son??? at least then he will get the help and support he needs, thats what happened to our son, it was only once he was sectioned that he got the help he needed

[florrie]

I just found out some more info from ken, the doctor told jake he would end up in prison if he didn't go on anger management course, well i know that is dangerous for his particular difficulties he wouldn't understand what they were saying, has anyone else had this kind of attitude , it is a disability, he has extreme difficulties processing information, he is not a criminal. I don't know what to think it reminds me of the psychologist I saw for depression who told me asperger people ended up in prison, how is that helpful, they do not know what they are talking about, and made me feel more depressed.

[pepper]

oh florrie! thats terrible! gosh - i cant believe doc is banging on about anger management, ur family must feel so let down at their ineptitute at understanding ur son.

 

dont glet yourself feel down ( ok i understand that a pressurising comment as u have to sort all out) but do look after yourself first and foremost

 

good luck for the future. Is there anyone local that u trust and can help you at this trying time? you need support as well as your boy.

 

*big hug* keep chin up

 

xx pep

[pepper]

psssst at the 'asperger ppl end up in prison' shall we gather a list of really OBSCENELY succesfull ppl' who alledgedly/ have aspergers?

 

INSULTING! hey! as I say, it isnt a handicap, its a different brain formation - I've the most upbeat boy who is happy understanding that hes wired a bit different. What he lacks in some skills - he's gained in others

 

no way id swap him, if your boy isnt coping, its the fault of the majority- happy my lads a minority cos hes special in his own way, and its a social crime that your young adult hasnt been helped earlier on ( oh do forgive me for blathering away) have been following thread and im so cross to hear your lad has slipped through the system completely

Edited March 1, 2006 by pepper

[florrie]

Thanks so much for that support pepper, it is just so difficult, I just cannot believe it either, Ijust do not know what to think, I agree he is not coping because of the terrible so called support he got earlier which was harmful, and that then contributed to my difficulties in coping. I'm feeling very anxious abut this

[pepper]

I'm sure many ppl can offer and have offered good advice and support system, its just so shocking its came to this

 

btw, my sons father ( whom i feel - now i know is undaignosed AS) mentioned years ago that he thought he was schitophrenic in teen years and dropped out of uni. I mean, I dont know much about ASD but i have read lots of mental illness is missdiagnosed - and unsymathic education system can give rise to mental illness ( huge apologies if im rambling all sorts of useless stuff) just mentioning what i recall

 

xx pep

[lil_me]

I would cmplain in writing to the GP's practice manager, and maybe the PCT aswell, he shouldn't have said that, particularly to a person with AS who takes things literally.

 

Good news with the flat, might be worth giving Welfare Rights or Citizens Advice a shout about the benefits issue.

[nellie]

Florrie, <'>

 

Great news about the flat, but so sorry to hear the GP appointment went so badly. To be honest I'm not sure what to suggest. I think I would be thinking about changing my GP. Would that be a possibility? Maybe you could make enquiries about other GP's who have an understanding of ASD.

 

lil me has given you good advice about benefits, Welfare Rights, Citizens Advice or Princess Royal Trust for Carers would be able to help.

 

This site has a great guide for filling in the DLA form

http://www.bhas.org.uk/

 

Another great source.

DLA - guidance for adults with an ASD completing the form

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=300&a=7788

 

I have just completed my sons DLA form, he's 25 and wasn't able to fill it in on his own. I found this tick box form very useful indeed, it made it easy for him to document his difficulties.

http://www.nas.org.uk/content/1/c4/77/90/D...application.doc

 

Hope this helps.

 

I hope things improve soon.

 

Nellie <'> <'>

[lil_me]

Benefit applications can also be done by an appointee, my friend does this for her dyslexic son.

[Kathryn]

Florrie,

 

Good news about the flat, but I understand your concerns about your son coping on his own. I hope you manage to sort out benefits for him soon.

 

I'm sorry to hear the GP appointment didn't go well. I agree with Nellie that it might not be a good idea for J to stay with this particular GP who doesn't understand his difficulties. You mentioned that your new GP was sympathetic - is it possible she could see your son?

 

K

[florrie]

Thanks for support this is a new gp as i moved jake from other practice as i became certain the other gp was blocking referals to his psychologist because he never received them and i madeurgent calls to him and he never received the messages, one day he saw that i phoned and called back immediately and saw us the next day he said the referall had to the wrong place, the thing is has happended 4 times with that gp so I'm incllined tothink it is deliberate.

 

There are no gps in that practice with understanding of asds, i did have one about 6 years ago who was great but another doctor struck me off his list it is really complicated and I don't know why, I wouldn't dare complain otherwise you will never get any help,and it all goes on your records, anyway i complained before when i was struck and they just doctored my records and manipulated stuff and said i was an unpleasant person etc which really upset me, one doctor told me to f*** off and sort mylife out when I felt suicidal . and alstuck together , there was nothing I oculd do i've learnt that when you object you get burnt you get burnt, I have to go another way round it. I know I sound paranoid and I am but it is true. K will tell you too it is true, i think they misinterpreted me to such a degree that they thought that was the best way to deal with me, I don't know why I'm only guessing

[florrie]

I know I have to work at remaining positive otherwise I will just crumble, and the positive messages Ihave received have really helped with that, and dwelling on the negative things that have happend in the past doesn't help, I have to move forwards and it is reaally hard because i have got bad depression and i think it has probably been caused or exacerbated by all of this, i have to try and move forward now. I can't bear all that negative comments they make, it really hurts, although my gp was nice to me but my first one was too but eventually got fed up i guess because they didn't know what was wrong and kept making the wrong conclusions before i understood i had asd.

 

Ihave difficulties arranging thoughts around concepts which is what lb tested for and institue of cognitive neuroscience and causes the communication difficulties in all asds, and in my case why i ramble and sometimes never get to the point I do reach conclusions but I can't demonstrate them because i process differently and you can't just say to them well iknow because i know, you need tot demonstrate how you know, and that is what is so hard, and while most people on here have understood what i'm saying because of there own understanding of asds gps, and those with no understanding or experience of asds don't.

 

I remeber being told by j psychologist of a asd child who could get to the right answer but couldn't do it the way he was taught so they put him in the remedial set or whatever they call these days.

 

Also because I present on the "mild" end of the spectrum the expectations put upon me to be able to cope have been overwhelming, but my ability to arrange my thoughts around concepts is actually severe and this is the core prob of asds and why you can't say it is mild or severe based on what you think you see.

 

Sorry for ramble

[florrie]

everyone on here has been an absolute godsend, even though people have got their own difficulties they have taken the time to repeatedly come back to this link and offere heplful advice.

 

Thanks all so much

[Kathryn]

Florrie,

 

<'> <'>

 

You express yourself very well in writing, I think, better than many people who are not on the spectrum. It might be a good idea to write everything down and get your point across to the professionals this way, rather than trying to explain it all to them, if you struggle with this.

 

I hope in between worrying about J's needs, you manage to get some support for yourself too.

 

take care,

 

 

K

[timelord]

hi florrie, our son had several spells both in young offenders institutes, and prison. whuile not the ideal [palce for someone with aspergers, we found that the daily routine in prison was ideal, in fact because the routine in jail was so strict, he could not survive on the outside, and as soon as he was released, he did something so that he would be sentenced to prison again

[Guest hallyscomet]

Hi Florrie, <'>

 

Thinking of you, and sending you lots of these <'> <'> <'> <'>

 

Hope today is better than yesterday, you are accomplishing so much, it is exhausting too..

 

Take care

 

Love

Hailey

x

[rvsurtees]

Hi Florrie, i hope things are getting better for you now. it sounds to me like people are ignoring you because they are able to, so perhaps if J and K agreed you could get your local paper to print your story and embarass people into doing the jobs they were in employed to do? just a thought and perhaps not appropriate for your situation.

[florrie]

Thanks, things are a little better at present I agree people ignore the situation because they are able too i go into passive mode and I agree with the rubbish they say because i can't process it quick enough annd sometimes it can take weeks to get together what i want to say or even years, and then I feel like i want to explode with frustration bu t no one understands why but when it builds up year afer year after year thats what happens, probably what is also happening with j and other asd who have meltdowns it is the sheer overload and stress they experience and it may not be clear what is causing it at the time of meltdown I've learnt to internalise mine as outbursts weren't favourable for me but it has made me more mentally ill. I wouldn't know how to get the newpaper to publish story anyway.

 

J moved in to his new flat yesterday but it is a year trial and i'm so worried things will go wrong, I mean disaster occured when K went on holiday for 3 weeks in summer, there are a number of rules ie no drugs or he is out, no music that is loud and that is his main interest and he doesn't get why it might irritate others, although I think he is begining to i hope so, and if they are broken he will lose accomodation and he is not always able to control the situation with people that takeadvantage etc, I know he will try his hardest, I just hope it is enough, he'll get it eventually it just takes time and usually disaster occur before he gets it, I can't cope with it I'm the opposite I don't want to do anything to offend anyone and take it to the other extreme

 

He is getting some support from some who is checking things on behalf of the housing association, but no understanding of asd, she started lecturing him and K said he hadn't understood a word of it but it is not always obvious to others, when you explain he hasn't understood they then treat you like a "retard" sorry for that dreadful expression but I couldn't think of another word to explain what i mean i don't mean it literally and would never use that word to descrive anything normally which he is very sensitive too, and makes him paranoid.