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Trust The Cabbie

August 22, 2016

Despite years of experience that proves otherwise, I still cling on to the idea that if someone terms themselves a “professional”, they’ll have an understanding of autism and will have the empathy and good sense to consider reasonable adjustments. I wish I could let go of this belief because it doesn’t cease to disappoint and always adds to extremely stressful situations.

I’ve not slept much at all the last three nights. I keep myself awake having fantasy conversations with people from housing and social care. The place I’ve got to go and view on Thursday doesn’t feel right at all. It fails to tick so many of Steven’s boxes. I’m stressed because I can hear the housing officer saying I’m being too picky. I imagine the things that are so important to Steven’s well being dismissed as unimportant. And I still have those words like ” difficult” and “uncooperative” from 2010 ringing in my ears.

Steven has been picking a scab on his arm that has become infected. This morning I tried to arrange a GP’s appointment. The woman I spoke to knows Steven but I still explained his autism and said I would need a time when we have 2 support workers on duty as he needs 2:1 when he goes out. I suggested Thursday morning. No can do. She offered Friday morning. No good as only 1 support worker on duty. After a few minutes of stalemate and a lecture on how busy the doctors are, I asked whether the practice has an autism policy. Two minutes later, she came back with an 11am appointment for Thursday.

The other big thing is Steven’s weight. I reported that he’s lost four stone as we reduced the anti psychotics. I reckon he’s possibly lost another two stone since stopping them completely. It’s wonderful to see the weight fall and for his energy and fitness levels return. The delight is tempered though by my anger at 7 years of no professional acknowledging the link between the medication and the weight gain. The number of dieticians I’ve seen. The amount of time wasted compiling endless food logs. The doctor who said “starve him”. The psychiatrist who said, ” you’re letting Steven down by letting him get so huge”. Hillingdon’s assertion in court that I was managing Steven’s behaviour by over feeding him. For me it’s been a terrifying seven years of seeing Steven balloon to a probable early death whilst all the professionals blamed me. Isn’t the truth that the medication causes such a chemical imbalance and strain on the organs. Is an early death (by 20/30 years) the price to pay?

On the way back from swimming yesterday, I asked the cab driver to do a detour, so we could check out where the house I’ve got view is. It was a mistake. Steven had a meltdown and the five minute car journey got pretty hairy. The cab driver handled it brilliantly. As I paid him, I said, “Thanks for being so patient. You must know someone with autism?” He replied:

“Nah mate. Just common sense”.

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From → Social Care

12 Comments
  1. A rare commodity, especially in official circles!

  2. Don’t you just love it when it’s ordinary folk who get it so right? Why don’t so-called professional revert to being people first – not to say good ones will automatically treat people with respect as well as with insight. It isn’t always “common” sense though it helps – like treating people with respect and not making assumptions. My friend (we’ll call her Joan) and I were in Sainsbury’s queue once when she didn’t have the money for the giant milk she wanted. She wasn’t for listening and started making a lot of noise when a young man who was one of the staff (maybe a manager) came over and said to her “Is there a problem madam?” She was so surprised to have him address her, let alone talk to her with respect that she immediately ceased the noise and we left quietly without the milk!!

  3. Leo permalink

    Wow. Indeed what a lovely cabbie.

    And Mark I totally get your anxiety.
    Keep strong and keep going for what you want.

  4. Superstar cabbie. One to ask for by name for future bookings?

    And Steven’s radar is obviously in A1 working order. He already knows, without being told anything about it, that the Thursday flat is Totally The Wrong Direction For Him To Go In. Unless it ticks all of Steven’s must-have boxes, it has to be rejected. The new-build is waiting.

  5. empathy and good sense would be nice, the requirement to consider reasonable adjustments will suffice in their absence. Steven’s wellbeing and preserving his independence cannot be dismissed. You bid via the choice based scheme for this particular property and Steven’s priority cannot be withdrawn if he declines the property as unsuitable . You have only been provided with scant detail of the property before viewing. Anything and everything that you need to raise as an issue for refusal must be recorded. The location of ‘ kerb side’ in relation to the property potentially matters for safe pick up and set down, whether Steven is able to see people arriving at the property potentially matters. The mismanagement of Steven’s weight gain is appalling, stay picky and difficult !

  6. Mr Trebus permalink

    Bit of an emosh day but this moved me to tears. I would love to see an up to date pic of Stephen on here.

  7. Pauline Thomas permalink

    It amazes me how psychiatrists prescribe these drugs but do not bother to inform you of the side effects like weight gain, restlessness, aggression and overwhelming tiredness. It was once said to me that if you read all the side effects on the manufacturers guide lines you would probably imagine you have got them. However there is no way you can imagine weight gain.

    Mark to have your integrity questioned by professionals who have not bothered to check the weight gain side effects of risperedone is insulting and yet parent blaming is the name of the game when they do not know the answers. People who are articulate and have experienced terrifying withdrawals from antipsychotics get listened to. However LD people and their parents get ignored when they raise concerns about the medication their loved ones are being prescribed.

    People with LD are given antipsychotics even though in most cases they are unable to tell the clinician what side effects they are experiencing. They are being blindly medicated, sometimes to their detriment, and no one is questioning the ethics of these practices.

    The Royal College of Psychiatrists are now beginning to warn doctors about the overuse of benzodiazepams. The drug of choice for tranquilizing people who are challenging. These are highly addictive and can in the long term be counter productive. They should, if used at all, be used sparingly and for a very short while because they can actually do more harm than good. What’s the betting they are being used regularly in these hell holes known as ATU’s.

    Bedlam chained poor souls’ wrists and ankles. ATU’s chain their brains.

  8. Shirley Buckley permalink

    Martin’s consultants and I knew of all the risks of the various benzodiazepines in 1978. This was owing to the quite simple fact that we worked as a team and all my observations were recorded. I also had direct contact with the pharmaceutical firms involved. However, this was Switzerland, and the Children’s hospital Zurich, one of the best in Europe. The consultant trained at Great Ormond Street, which was considered top notch. Those were the days

    • Pauline Thomas permalink

      Shirley forgive the mistake. It should be benzodiazepines and not benzodiazepams. I had the benzodiazepine called Lorazepam on my brain when I was typing my response to Mark’s blog..

      • Shirley Buckley permalink

        My e mails and comments contain all sorts of mistakes, worse than spelling ones! Benzodiazepines are so complex and dangerous.Clonazapam was one of the worst for Martin – gave him tonic clonic seizures instead of stopping them

  9. Judy permalink

    Find it staggering when psychiatrists claim anti-psychotics don’t cause weight gain when they see the evidence that they do every working day. there is also huge amounts of research confirming it. Sometimes also deny sedation. however if you ask nurses they all say , yes sedation and weight gain. ……

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