Jump to content

call me jaded

Moderators
 View Profile  See their activity

  • Content Count

    2,292

  • Joined

  • Last visited

  • Days Won

    3

Posts posted by call me jaded

  1. Posted · Report reply

    Okaaay.

     

    Let's not get into a debate about whose life is the more harrowing, because obviously it's yours and I have been extremely lucky.

     

    I still count breaking into a sweat to hold down a child who'd turned into an eel and was screaming primeavally whilst the anestheatist did his stuff (whilst apologising about how badly it was going) and then watching him go off to have a scan that you'd been told might reveal a brain tumour pretty harrowing. Call me lucky.

  3. Posted · Report reply

    Yes I agree there can be 'learned helplessness' if there's always going to be someone there to pick up the pieces. You get to a point where you accept that or walk away. As a family we do it to support the mother who is now getting on a bit and who we really can't leave to get on with it as she was being taken advantage of quite outrageously. The thing is to step back emotionally if you can. Very difficult I know.

  4. Posted · Edited by call me jaded · Report reply

    Having a son who has had an MRI, the only way it was achieved was by giving him a GA. Restraining him so they could get the needle in and then seeing his tiny motionless body wheeled away on the trolley is one of the most harrowing memories I have. I would make the same point as Charlotte Moore about the difficulty of expecting a child to just submit to the procedure.

     

    Having also been through battery after battery of testing to be told the results were 'normal' when clearly everything was not normal I think parents are not generally seeking validation of their preconceptions, but seeking some answers. I didn't appreciate the strain of living without a diagnosis until it was removed. Every 'results' consultation we went to up to that point we were bracing ourselves to hear whether his condition was terminal. Autism was a relief. He was nine years old.

     

    Anything to speed up the process is welcome. 90% (and hopefully more) getting an accurate diagnosis is something to be celebrated. The focus on weeding out of 'false claims' seems bizarre TBH.

  5. Posted · Report reply

    You have to be able to isolate all new plumbing and they normally use those things that you see on washing machine connections that you turn a quarter turn to switch on or turn off. Can you locate something like that for the taps you need to turn off? It would depend on him not seeing you do it for it to work, but it has worked very successfully for our shower - the other kids even know how to turn it back on.

  7. Posted · Edited by call me jaded · Report reply

    I have a family member with mental health issues and long term cannabis use who has dipped in and out of crisis despite a tonne of help and support from many family members - can't tell you how many times we've all got together to bail him out. His mother has said to me so many times that she hopes that this time he'll sort himself out. And yet he doesn't, ever.

     

    I'm not sure that there is much more that you can be doing other than be there to pick up the pieces. There doesn't seem any preventative agencies out there. I did some work for what was then the Healthcare Commission around people in supported housing. There seems to be a cycle of sinking into debt, being close to being made homeless, having some kind of breakdown and being admitted to hospital, then being put into supported housing again. Very depressing stuff that has stayed with me. I'm not sure what help there is out there. It's all gate kept by some very tight access criteria so that you really do have to be at rock bottom.

     

    You have my sympathies.

  9. Posted · Edited by call me jaded · Report reply

    Been mulling over all the 'what if's here for some time due to the geneticist thinking she'd found something that fitted DS which would mean he doesn't have an ASD after all. No diagnostic conclusions yet and I am hesitating to pursue it without some kind of reassurance that his placement at his ASD-specific school would continue. We have decided not to 'risk' the school placement so pursuit of an accurate label will be delayed.

  18. Posted · Report reply

    You're best bet of finding out is Hansard. I seem to recall that the cost of appeal to the parent averaged at £5,000. That was maybe in the Bercow report, but certainly evidence given to the Commons Education Select Committee that was chaired by Barry Sheerman (so maybe the Sheerman report). That was SENDIST in its old format, not SEND.

     

    I'm sure an accountant looking at the assertion that it was costing nothing would think otherwise. Perhaps you could phrase it in those terms if you can't find a figure.

  23. Posted · Report reply

    Yes we have a couple of secondaries with them and plans to open more.

     

    You need to check the criteria carefully. We have a primary S&L unit for children without ASD and about 5 for those with. Your parent partnership service should be able to guide you on what's available locally.

×
×
  • Create New...