1. What do I do?

    Posted by swissmiss at Wed Aug 29, 2012 8:50 am

    I find myself back where I started...older, wiser, more skilled...but no services for my youngest son who is severely Autistic let alone for my eldest who has Aspergers. They are adults now and as bad as it was for them as children now it is worse. If you have Aspergers or high functioning ASD you have to pick one of the few places in the country with any services which even so are very variable and patchy and move there it seems. Assuming you can.
    There was bugger all [apologies for my language!] in Lincs for either of them and it is very likely that had there been their Dad might not have taken his own life. We have had to swallow our pain and hatred of Social Services and try to get services for my youngest. 15 months later and after leaving me with his severely challenging behaviour....meltdowns, not sleeping all night, punching himself in the face...until 9 months in we couldnt cope any longer and had to sit in at the hospital and call the police to stop them throwing us out [I so wish I had felt like John and Yoko more than an oppressed member of an authoritarian dictatorship!] ...and even then several more collapses in our ability to care for him ...we being me and my eldest son who by all considerations should be being cared for not caring for his brother and me...all we ended up with was a Social Worker who went around telling everyone all sorts of crap about me and a crisis team consisting of an OT and a SLT who every time I said I couldnt cope sprung into alert mode to take my boys away and refer me for Psychiatric help! In the middle of all the crisis with Mum and Ali struggling with his emotions even more as a result...not to mention me...rather than care and support they tried to build up to this. The moment for me was last week when i was holding Ali to stop him hitting himself and trying to ring for help...Angus had to take the phone and they started on about whether I was cracking up and did they need to intervene...he said very calmly and assuredly [he has been through so much with his Dad that he has learned to deal with these prats] "It's not Mum that has a problem..its Ali!" I was so proud of him. It made no difference. Well a crisis nurse was called but she never came. So we managed...again. Angus and I feel that enough is enough...the system has been tested to its limit and has failed us. We cannot live under threat of being separated rather than given care and support...and God forbid..LOVE?
    A calm has descended and we are on our own again. What next?
    Karen :?

  2. Re: What do I do?

    Posted by jaye2080 at Thu Sep 13, 2012 7:34 pm

    Hi Karen,
    I long ago reached the conclusion that nobody is going to come to help me. Much as i have struggled with my husbands behaviour problems nobody wants to know. I've been told that unless my husband asks for help himself or is a danger to himself or others there is nothing they can do. Now that they know this behaviour is neurological and not a mental illness the situation is worse. They say control the seizures and you stop the behaviour - a lot easier said than done!
    I've had to stop hubs from jumping from a first floor window, he was in a post ictal state at the time and didn't know what he was doing, same thing when i had to stop him going to the shop in the buff. He's sawn through the plumbing and flooded the house and pushed the car into the road leaving it to free wheel because he couldn't cope with taking it for an MOT. These and hundreds of other incidents are not enough for me to get help, god knows what has to happen before help arrives.
    I can understand what you're going through there.

  3. Re: What do I do?

    Posted by swissmiss at Thu Sep 13, 2012 8:23 pm

    Thanks Jaye. It does help to share. The SLT got in a muddle and thought my mobile number was the psychaitrists number so i got some of his messages. I couldnt resist on Friday using this to ask if she had heard from me to which she answered "NO." and told him there was a Multi Disciplinary Team meeting to discuss us on Monday at 4pm. So I emailed her because originally there was to be a Care Pathway meeting on Monday which I was to be invited to attend. She tried to deny having told me this but I had it pencilled in my diary. So I asked if there was any meeting to discuss us and she denied it. I rang the manager of the SS dept and said I understood there was a meeting happening. He told me there was a "professionals meeting that afternoon to discuss how best to help Ali and myself" so I asked if I might attend so I could best inform them of our needs! No! So then the post came. Because I have put a stop to them coming to our home and nosing into our lives because I dont trust them and it isnt producing any support anyway they had referred me for Psychiatric help! I was furious. I rang round and found out who had done it, what they had said in support of it and rang them...the clinical director of the mental health team..he apologised and withdrew the referral and we had a frank exchange of views. He is quite nice..has an Autistic daughter himself...but i still dont trust him. neither will i ever trust any of them again. I emailed the SS manager today and asked if they intended to tell me the outcome of their discussions how best to help us.......no reply YET!
    We are planning a future in a new place with no records and a fresh start ...I shall never ever open up to anyone from SS or LD teams in the future as they use it against you not for you.
    Karen :x

  4. Re: What do I do?

    Posted by suejane at Sun Sep 16, 2012 4:08 pm

    Im here for you swissmiss if you need to share anything, or say anything or scream! Im very much on my own with Cian now, but hes lucky hes back at college and playing sport. When he gets into his low moods we really are on our own. Might you want to stay where you are until you feel stronger im so angry no one is helping you. Do you have an Ombudsman in your area who could act for you if you are not satisfied with things as you obviouly arent. Hugs xxxx
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