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Damn – Forgot My Mantra.

August 4, 2017

Yesterday, Steven’s reassessed care plan arrived. All 14 pages of it. Whenever I receive a letter from social care, I go through a short meditation to protect myself from what is to follow.

I lie down on the carpet. I close my eyes. I picture myself being fitted into a solid looking suit of armour that covers me from head to toe. I repeat the following mantra several times until I feel ready to read the correspondence:

“Do not have an emotional response to anything you’re about to read.

The document will say nothing about the real you or Steven.

Steven is the least important person in this document about him”.

It normally works a treat. But yesterday I got distracted by Steven wanting to discuss the career of The Thompson Twins and forgot to do my mantra. I was as exposed as if I’d been stark bollock naked.

One line did for me. Under the heading “Developing and maintaining family or other personal relationships – eligible need”, it stated “Steven has not formed any friendships”.

I’m not going to go into a defence of the many friendships that Steven has. The important thing is that there are several people in his life that Steven calls his friends but they didn’t count because they didn’t fit into the assessor’s classification of a friend. They very fact that it is a section in a care plan shows that there is a pre-judgment taking place.

It took me hours to calm down and then I reread my last carer’s assessment and realised the same attitude is at play there too. People I’d described in my assessment as workmates suddenly became “work colleagues”. Similarly, I remember talking to the assessor about some of the friends I’ve made online and they are classified in the final document as “online support”.

I guess it doesn’t matter if you are a person with a learning disability or their family, it’s beyond comprehension that you can live a life, and have relationships like the rest of the population. Heaven forbid I ever went on Who Wants To Be A Millionaire. Instead of phoning a friend, I’d be asked if I wanted to call someone from my circle of support.

It’s patronising, bordering on the contemptuous, nonsense.

Rant over. I’ll go and buff up my suit of armour whilst listening to Doctor Doctor.

 

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5 Comments
  1. When I first started working with disabled children we had to experience what they experienced; being pushed around in a wheelchair, being spoon fed, communicating without talking. Maybe the people that do these assessments should have the assessments and reports done on themselves first?

    • Yes, they should be assessed too

      I often re-phrase language in assessments and send back amended versions, encouraged now even more by Mark’s blog about the jelly, and remind people to translate into normal language – or I translate for them.

      Just as there was a ‘Parental Statement’ in SEN Statements at pre-school age, there should be as long as the parent is involved and wanted by their child whatever age.
      We (family) contributed most to assessments but wording is sometimes altered – our psychiatrist wrote my wording and attributed it to me, which I liked.

      I introduce some people as friends, some not.
      My son had friends at school, who liked to sit next to him or followed him around, as they felt safe with him. He had had affection for them. And university students I employed to look after him, acted like friends.

      We need social care not to be so anti-social, and not to be more medical model than health.

      Our psychologist is okay, and psychology academics I meet actually are too and less hung up on special needs terminology.
      The one at the ATU, however, used the word ‘support’ a lot, but never actually supported us at all.
      Real support would be great..
      Emotional needs are the biggest thing to speak out about.

      And yes, I have my mantras too, and I re-read later instead of panicking on the spot. I used to fall on the floor mentally. Not any more.

  2. Pauline Thomas permalink

    Surely the lovely support workers who are a part of Steven’s life are his friends too. Surely the people he meets at the Mencap pool are his friends also.

    How can someone make such a ridiculous statement about Steven and his supposed ‘lack of friends’ when they obviously do not know him.

    Not so long ago we asked the disability team to arrange for my son to talk to a psychologist. We thought maybe talking to someone might help him now that he is experiencing some psychosis.

    Two ladies came to see us first without my son being present. ‘How are you going to explain to your son why we are seeing him’ My husband said ‘We are going to say that you are his friends and you are going to help him’. ‘No, you cannot say that because we are not his friends.’ ‘But we always say that people who help him are his friends’ They were not moved by our explanation so my husband said ‘do not bother to see him then’.

    I can fully understand that professionals need to keep at arm’s length people who may become so dependent that that they become a nuisance or a threat. However my son is never going to be ringing them up at all hours of the day or night or even stalking them. He is incapable of doing those things.

    The English dictionary states Friend – A person whom one knows well and likes, supporter. There are many people in my son’s life who he knows and likes and nearly all of them have been a part of his support through school, college and day centre. He calls them his friends. Why is it so hard for those two psychologists to go along with that?

  3. weary mother permalink

    There are so many ways the – Publicly paid by us people – who are paid only – to support our sons and daughters can make it difficult – if not impossible for – our sons and daughters – to have what ‘they’ the publicly paid people – call friends.

    1. Lead the organisation so badly that very human being care manager or social worker ‘friend ? leaves.

    2 Fire all the kind and caring long tenure directly employed ‘friends’ ? …care assistants.

    3. Boot said son daughter out of day centre to free up places to be sold – for loads a money – to other LA’s….who have closed theirs.

    4. Reduce the contract offer for agencies, so excellent ‘friends’ ? support workers – disappear – to be replaced by strangers.

    5. Cut support and day care so that son daughter with no mum or dad – is sitting in park in rain – dirty and shabby and no one walks near them far less talks to them’.

    6. Believe that our sons and daughters ‘friends’ will all have – and must have – a similar learning disability. And not ever be employed to support him.

    7. Cut benefits and increase travel costs – decrease access to – community events – and local Mencap club, so that only family supported sons and daughters can attend.

    Also:

    My son has a diary of birthday dates and with support worker he sends a card to every member of his beloved extensive extended family – I have to ask him when a birthday looms for I am never sure of the actual date..

    Ask him who his ‘friends’ are – and he as Pauline’s son will relate and name people who have been kind to him – valued him – and have taken the time to know him.. As has his current very excellent support worker.

    He will talk happily about his school friends and teachers of long ago – apart from one boy and one teacher both of whom were thoroughly unpleasant to him.

    My son can discern between people in a way that I cannot – and the people who are kind and treat/ed him as a person, and people who listen/ed to him even when they are no longer around,, are/were all very important to him.
    .
    He would have difficulty sifting through all these important, to him, PEOPLE ,

    ……..to keep a care manager happy – and fill in a space on an assessment form.

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