Clarypuff

I've been away for far too long. Forgot how useful this forum is. DS is now 16, on the way to college to study music and (mostly) doing well We still have the usual problems, lack of support, ignorance of others, but together we are getting thru and have a much better relationship than we ever did before. But please excuse if I still vent, its nice to be able to where people understand what ur going thru

Requested carers assessment in Feb, it was done last week. Took phone calls from me weekly and mental health team hassling to get it tho. Don't know whats going to happen yet, SW said no respite outside of DCT, no direct payments, she's going to look into connexions. I feel like they're fobbing me off til he's not their problem anymore. And I heard its harder to access adult services without a statement in school. I'm sorry, all I ever do is post negative here, but I feel so stuck.

Hi Dana, thanks for support <'> this is my second attempt at reply, crashed last time! I'm just so isolated. SS paid for course with local charity called ADD-vance, they were very good but only lasted 8 weeks went to support group but felt really out of place, only one there with teenage late dx and associated problems. Didn't want to scare them with my experiences. Its hard to explain to people with primary school children the impact the lack of support has had on all our lives. Despairing at the moment.

Hey. Just when you think it could only get better. OH left me, said he couldn't deal with my problems and his own. Nice. Had breakdown, on lots of anti-depressants, still can't cope with DS on my own, stuck in this house 24/7 as he can't be left. Sleeps all day, refuses school, I have no life left now. Complaints about CAMHS and SS still ongoing, no support in place even after mental health team requested. MP wrote letters but still nothing. SW told me if DS had any other disability it would all be in place but disabled child team don't do ASD's. Want to get out of this rut but don't know how. My self esteem is rock bottom, hard just to get thru the day/night. Son is great guitarist so thought I might take him to some gigs but I seem to embarrass him. He said Im having a mid life crisis cos I dyed my hair red and had another tattoo! Plus money is a huge issue, DS last 3 months mobile bills total £600. Can't block subscription services apparently. I had to give up my job to care for him, don't feel I'm doing a very good job tho. So isolated, esp without OH. Positive suggestions urgently required please.

Hey, sorry haven't been here for a while, slight breakdown/overdose episode. Still not much better but struggling on. CAMHS complaint is going thru now, feel they have done nothing for my ds since dx, he feels that way too sadly. His school (mainstream) is the only place we get any support, they have been fantastic since dx, can't do enough for us. Unfortunately they don't have the authority to get support for us at home, hence problems with SS (ongoing complaint, now closed case and left us with no support at all) and CAMHS. I'm sick (literally some might say) of having to prove myself as a parent, I don't claim to be perfect but sometimes it seems they use it as an easy excuse when they don't know what to do. I don't drink, do drugs, break the law, abuse/neglect my kids but we are struggling. SS do nothing even when contacted by school, hospital, police, MP. I don't have the fight left in me. All I wanted was an appointment with a psych to get some behaviour management advice (for ds and me) and one night of respite a month so I could have a bit of a life.

He was diagnosed in 07 but never statemented, running out of time as he will be 15 next month, I heard statement can take up to a year Wish I had known sooner, prob wouldn't have got to the hellish stage it has. Googling PALS now...

Can anyone tell me who to complain to about CAMHS? Is it county council, PCT? I've looked but can't find! Am completely sick of being fobbed off when all I want is some support for my son. Already got them running scared cos I went to MP, ha ha. More pressure needed, squeaky wheel gets the oil...

Bless your heart. <'> I have no advice, just wanted to sympathise. I've been at the GPs begging for help, he couldn't even understand me I was crying so hard. I have begged DS father, social services, anyone to take him away on more than a few occasions. It isn't at all what I want but sometimes the fight just goes out of you especially when you feel you're battling on every front. My ex also doesn't see problems I have to deal with, his new gf is spiteful and fills DS head up with lies which I then have to deal with when he comes back. Have stopped access since I found out she was giving him beer and cigarettes. There goes any respite I might have had. A good friend of mine (funny how you find out who your real friends are!) told me I bear the brunt because he's secure with me. It's now a standing joke ; hows DS? Secure! I think if I didn't laugh I wouldn't cope at all. I really hope it works out for you, try and maintain contact however difficult it is. I think she will need to know you're still there when she needs you. However much she may blame you now. <'> <'>

And it has hit the fan again. Good idea about councillor etc. but after disturbing episode last night that i won't go into have e mailed requesting appointmant with mp. I really wish I had something positive to post on here, feel like such a miserable cow. I gotta cheer up

That's fantastic! Good on you!

Thanks jaded. It was actually a child in need meeting. I have requested another assesment by the disabled child team as I don't feel the specialist adolescent team are taking ds AS seriously, copied it to director of childrens services too. It usually takes me a day or so to re-group before I can continue the fight, just wish they would listen

No joy yesterday. Contact a family not in my area, only charity I could find didn't even bother to reply to my e mail sent on Mon. Am getting desperate. School called today, we're being referred to EWO cos of ds lack of attendance. Its not fair, I've been trying so hard for so long, asked for help since he began secondary school, all they want to do is work with me, not ds. Also forgot to say in post about Weds meeting, social services want ds to have complete health check including blood tests from GP, anyone had this? GP won't do until SS send letter outlining what it is they're looking for. I'm so down. Burst into tears outside supermarket today, man collecting for cerebral palsy children, all I could think was if my child had any other disability they wouldn't be blaming me. I wish we didn't have to prove our parenting skills over and over before we can begin to fight for what our children need

Big meeting 2day. Waste of time. Couldn't get anyone to go with me, too short notice. Had my mum and boyfriend with me for support tho. Made notes of everything I wanted to say. No minutes of previous meeting, apparently they cancelled when I didn't show but I know they were talking cos of things CAMHS said on Mon. Oooh, that sounded sooo paranoid! I feel completely railroaded, they tell me that all the specialist in the country wouldn't make a difference, so what? We give up? And CAMHS have yet again stated that they will under no circumstances prescribe melatonin, even tho ds sleeps for 2/3 hrs a night. Don't feel I came away any further on than i was before I'm not giving up. Ds is definitely worth fighting for. Have workmen coming 2moro to fix holes in the wall (guess who!), so have to stay in all day. My mission is to hassle everyone I can think of. Don't see what else I can do.

Our local CAMHS also refuse point blank to medicate, however bad things get. I've been told he's too young, it's unethical! Not sure where that leaves the areas that DO prescribe it! Postcode lottery I guess

Js mum, will 'contact a family' first thing 2moro. Have noticed u sing their praises quite a bit on other posts so definitely worth a try. Ds is in mainstream school, not statemented, not entirely happy but from what I've heard he would have left by the time it came thru! He desperately needs help with his anger, social skills, organisational skills, sleeping, self care, the whole gamut really. I have been given lots of advice on strategies but things are far beyond what I can deal with. He takes no notice of me whatsoever. No-one takes the time to talk to him, that bothers me a lot. Nobbynobs, an insider! V useful to hear from the other side so to speak! Its not only what it would do to ds that bothers me, but to me as well. Already feel I've failed as a mother, that would pretty much confirm it. All I want is a bit of support for him, then I can manage. Anyway, I will request minutes, and try to be professional at Weds meeting! Thank u all x