Hello again

[szxmum]

Haven't been on the forums for a month (had to step away as everything was all getting too much) but thought I'd drop by to post an update.

 

A month ago ds, 17, was officially diagnosed with Asperger's Syndrome by Educational Psychologist. Eeeee what a difficult month this has been. Shortly after diagnosis we had another suicidal episode (second in a year), just thoughts and talking about it, no actions thank God. So back we go to the Gp and get yet another referral through to Adult Mental Health Services (still waiting for an appointment but I now carry their crisis phone number with me at all times).

 

I have left my job in order to care for ds and although I would do so again in a heartbeat, this is causing a lot of financial and emotional strain at home. We also took ds out of school and applied for DLA, he is now receiving middle rate care and lower rate mobility. I have applied for Carer's Allowance and am waiting to hear.

 

Filling in the DLA form for my son was tough (I ended up filling it in and he read and signed it), I'm still in shock, it is so hard to label your child as disabled and think of him as not able to function. I still want to deny it and say it's not so bad but the fact of the matter is that at the moment, because of his AS and mental health problems he cannot function independently, he cannot go to school, college or work.

 

I have been pouring over NICE guidelines for depression, anxiety and OCD (it's a pity the guidelines for Autism are a work in progress) and I have also been looking at AMHS care plans. So when ds's AMHS appointment finally comes through, I'll know what support he (and me as carer) are entitled to. Trust me, there will be no more labelling ds as shy and me as an anxious mother – it's awful to feel that you have to fight in this way but I do feel that finally people are beginning to take note and to take us seriously.

 

As regards support for the AS, I feel like I've hit a brick wall. The Ed Psych has made a lot of recommendations and labelled ds as high level needs but it is TOO LATE. Because of his experience at school there is no way that I can get him back through the door to access the social skills and social communication training that she is recommending. I don't know whether her report will count for anything with AMHS and whether they will be obliged to follow-up her AS specific recommendations or whether they will just concentrate on his mental health. Who knows, lets just say given past experience, I'm not holding my breath.

 

I would be interested to hear from other parents. Have you gone through something similar? How did you get through it? To people with AS – Has something similar happened to you? Did you find the courage to go back to college or venture into work? What made you venture out again from your home and comfort zone? How did you cope with the debillitating anxiety? Is medication or CBT helpful?

 

As always, any thoughts or advice would be gratefully received.

Edited June 2, 2009 by szxmum

[pearl]

Hi, I've no advice - just sorry you are having such a tough time, & glad to see you back here <'>

[Thompsons]

As regards support for the AS, I feel like I've hit a brick wall. The Ed Psych has made a lot of recommendations and labelled ds as high level needs but it is TOO LATE. Because of his experience at school there is no way that I can get him back through the door to access the social skills and social communication training that she is recommending. I don't know whether her report will count for anything with AMHS and whether they will be obliged to follow-up her AS specific recommendations or whether they will just concentrate on his mental health. Who knows, lets just say given past experience, I'm not holding my breath.

 

I would be interested to hear from other parents. Have you gone through something similar? How did you get through it? To people with AS – Has something similar happened to you? Did you find the courage to go back to college or venture into work? What made you venture out again from your home and comfort zone? How did you cope with the debillitating anxiety? Is medication or CBT helpful?

 

I'm sorry things haven't been going too smoothly recently <'> When you mention the social skills and social communication training, what sort of training was she recommending? I'm currently having help with my social difficulties.. I have a Social Support Worker and she takes me once a week to a group comprised of other people with mental health issues. We started off slowly, with me only wanting to stay for ten minutes or so, and now, I stay for about an hour and try to take part in an activity of some kind too. I know you mentioned that your son is 17, which unfortunately seems to be a difficult age with regards to mental health professionals.. They put you in the child services because you're not yet 18, but really the child services seem to be geared for younger children not adolescents. That was just my experience anyway. I had to wait until I turned 18 and was switched over to the adult services before I had any help with my social problems. They just didn't offer that kind of support at CAMHS.

 

I've been through a similar thing - I'm 19 this month and I've still never tried college or work. It's not for lack of wanting to. It's just far too difficult to venture into yet. That's why I'm sort of starting at the very bottom, by learning how to socialise properly and then I'm hoping as my confidence grows I'll be able to get a job and go to college, etc. I found having a Social Support Worker really helped. She takes me out every week, even if I only want to try for 5 minutes and she's right there with me. Anxiety is a big issue still. I will admit that the night before going out, I don't get much sleep as I'm too anxious.

 

I learnt some good breathing techniques that really help if I feel a panic attack coming on. I also take medication every day and that is also very helpful. It just really picks me up and allows me to think more logically. When I wasn't on my medication and I'd have a panic attack it would just completely escalate to the point I've even passed out. But now, if I start to have a panic attack, I'm able to think about it more logically and put a stop to it. I was suicidal when I was 15 and I still have the odd passing thought, but my mood is a whole lot better than before. I used to just stay in bed and cry all day, I didn't even bother with washing or dressing, so I've come a long way from that As for CBT.. I've had CBT sessions on and off for about 4 years. And unfortunately it just doesn't seem to be doing much. I thought it was helping a little, but apparently they weren't seeing as much improvement as they'd like and so they're currently thinking about whether to just discontinue it. I found that it caused other problems too. I'd have a CBT session for my OCD and we'd decide that I'd cut down on one of my rituals by like ten minutes. Well I found it so incredibly difficult that I noticed my skin picking got worse because of the anxiety. It just seemed like it always had a knock-on effect on something.

 

Wishing you and your son the best of luck!

[smiley1590]

i have AS,depression and anxiety so know personal experience how your son feels! is he on meds for his MH probs? does he get any regular help and support? and do you? how long he suffered with them? i suffered for 5 years! im on anti -depressants have been on and off since 14 years old! i can understand how can't stop you functioning day to day

 

the main thing for your son to have structured routine to get for something positive he is gaining and then his self-esteem is raised and MH starts to rise and improve and adjust! keeping a diary helps me alot and having something to wake up for in morning knowing i have to be in college helps me feel motivated yet accepted and socialising when sometimes feel like doing nothing sitting at home college gives me will to hang on in there! keep positive and upbeat!

 

what bout trying voluntary work maybe getting in touch with NAS see what practical advice they give you may be able to set something in place for him to help get in into something he enjoys has interests in aswell get in out and about mixing with others in society and reducing MH probs! keeping busy and active is important part of keeping MH probs at bay trust on that one!

 

he can then update on skills,qualifications while and feels like he learning and achieving like every one else maybe do part time course find what he'd like to do! study! and go from there only ideas that helped me along the way manage and cope so well!

 

it finding the balance work experience helps you find your feet in world of work gets used to changes that may happen before do it for real!

 

have u heard of CBT?

 

take care

good luck with eveything!

XKLX

[Goody]

 

Hi,

 

If you set the goal, then you can find what you need to do. Please refer my profile where I described about myself.

AS isn't curable and weak for stress.

 

 

Hope everything goes on well.

 

Take care,

 

 

Goody,