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Time to Conform

September 6, 2013

From now on, I vow to see myself in the way that the State sees me.

Tonight, the young autistic man who is not a member of my family went off to access the community at the local Mencap Pool with his two paid carers. This live in carer decided to catch up on some kip.

For the past three nights, the move/non move anxiety has really got to the guy who is not a member of my family and we have only got about four hours broken sleep each night. This live in carer is utterly exhausted from the constant reassuring of the guy who is not a member of my family.

Before I hit the bed, I phoned a member of my circle of support to see if he was free for a drink on Monday.

A couple of minutes after nodding off, my estranged wife who is not a relative phoned and we chatted for five minutes, which was odd as we don’t have a meaningful relationship in the conventional sense of a marriage.

And now, this live in carer can’t doze off and is eating a Cornetto instead, awaiting the return of the chap who is not a member of my family.


From → Social Care

  1. David permalink

    Understand where you are coming from, whilst admitting I couldn’t even begin to appreciate your feelings. Not sure sarcasm is the answer, especially as you have shown yourself to be articulate. Good luck.

  2. All of this shows that there`s something seriously wrong with the official line. It`s nuts. And it`s abusive.

  3. Liz. permalink

    The disappointment of the decision is bad enough – but the reasons for it beggar belief. I am so sorry you are having to struggle with this.

  4. Julie Cook permalink

    it’s fucking ridiculous but obviously you know that! How can this happen? Can we draw peoples/government attention to clarifying the family member/carer/son jargon? start a
    petition? WE HAVE TO DO SOMETHING (yes, I’m shouting)

  5. sparrow permalink

    Hi Mark – I hope you both manage to sleep better tonight. Hope the cornetto didn’t give you indigestion. Some professionals can be very cavalier with their powers as you know from bitter experience. My son’s an adult with autism so I think I’ve an understanding of how some people don’t understand, if you see what I mean. Life can be difficult enough without others messing things up sometimes. Hope you get some good news soon.

  6. Sally permalink

    Dear Mark,
    Surely you were not eating a cornetto, you were impacting upon it ! As in: “Mr Neary’s housing issues are impacting upon his abillity to access sleep”.
    And you are not tired-you have fatigue issues. Possibly you would benefit from access to support. A meeting could be called in which the word “support” would be thrown about like wet spaghetti, everybody agreeing how great it is , nobody defining what would consist of or who would be responsible for delivering it…
    I very much hope you are soon given some hard facts about housing, appeals, finances, and that Stephen had a good time in the Mencap pool.

  7. Only thing you can do is laugh if it wasn’t so tragic….

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