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Halifax & Petula Clark

March 5, 2014

I’m off to Halifax in a couple of hours to speak at a social work conference tomorrow. And then when that is over, travel on to Birmingham for an event with some best interests assessors on Friday. Although it is work and there is a hell of a lot of travelling, I am trying to treat it like a break as well.

As I was finishing off my notes this morning, I realised that at the point I will be starting my talk tomorrow, it will be exactly the 4th anniversary of the meeting I attended with Hillingdon where they set up the fake “transition home plan”. They had been “assessing” Steven for 8 weeks but i wasn’t allowed to read their reports until I arrived for the meeting. It was very upsetting to read everything they had logged and understanding how distressed Steven must have been at being there. It was also at this point that they started to talk about not believing me – they were so convinced by their 8 week picture of who Steven was, that they discounted my 20 years experience before that. Their view was that if Steven is like this in the Unit, then he must be like it all the time and I must underplay or not report incidents with him at home. You really can’t fight that sort of attitude.

It will be odd telling the whole story again tomorrow. The scars are still there for me and Steven but it has to be said that by going through that awful experience has given me the opportunity to speak at events like the next two days. By fighting the door closing on Steven and him being incarcerated permanently in a hospital in Wales, doors have opened and it feels okay to walk through those doors.

When I go away on these trips, we always tell Steven that “Dad is sleeping at counselling work”. A couple of weeks ago, he said to me – “Dad doesn’t sleep at counselling work anymore” (I haven’t been away since October). I wasn’t sure if he was saying this as a good or bad thing but I was a bit nervous about mentioning this trip. I needn’t have bothered. Steven has been busy making plans with his support workers and has got the next two days nailed. Here are some of the highlights:

This afternoon – visiting his mother to read his old photo albums.

Tonight – listen to his Blood Brothers CD. This will probably mean Steven and Michael having to act out the final death scene and singing “Tell Me It’s Not True” very loudly.

Tomorrow after swimming – Mrs Doubtfire, with the support worker having to make sure there’s no cream around for the “face pack in the fridge” scene.

And my favourite – I just heard Steven telling Alan – “Alan, after pepperoni pizza on Friday, Steven Neary and Alan will be singing Petula Clark songs”. (I’m glad I remembered to book a hotel or I could be sleeping in the subway).

It’s great not to be needed.

From → Social Care

  1. Kathryn permalink

    Thanks Mark – you are speaking for so many by reliving these terrible times and hopefully things will improve – one day.

    • weary mother permalink


      What you are in spades is a brilliant and passionate, loyal to the brim, proud and dogged advocate for Steven. Yours is the 24 hour eye on the ball, never off watch, number one model of knows what it takes and what it costs in every sense, to ‘advocate’, against these very ‘big’ guys with the tanks. The is something for Halifax etc, too?

      We held off accepting an advocate, for the advocacy service was contracted and funded directly by the LA. The advocates were used, it seemed to many, to just put another hump in the road for parents/families to climb over, when things (often) went wrong with LA ‘care’. This LA has also got a reputation for it’s negative aggressive/defensive style. Some advocates were inexperienced and many were young, and there was a revolving door of new and exiting staff. The LA has now appointed another provider.

      Because I am very old and not terribly fit, I have decided I have to take a back seat, so an advocate was appointed. We had another huge crises this week, (could have been fatal) the advocate although already engaged had been contacted, but was nowhere till the crises was over, so issue was resolved again by me. Having now spoken with the advocate, and it was an arduous waiting process – for I had to be checked out, I did not mind this at all. A ‘ bossy ‘ (to me and I know my son would experience the style as such and just turn off) advocate, (not a bit warm) told me bluntly what I already know, that advocate works for the client. The message was not really necessary?

      I had in friendly/politely (should not have to say this) way tried to find out a bit about the agency, and was met with chilly ‘who do think you are’ response, and was clearly not my business? My perception: we immediately had two opposing side. Sadly, in one, telephone medium, call. Where it seemed to anxious old me, a shiny new advocate (who has swallowed advocacy rule book ) had met anxious awkward oldie. Perceptions – mine: out of one reluctantly returned telephone call I was in despair. Incidentally, this advocacy service’s client book is closed after each issue, and ‘client’ has to reapply to the advocacy service with each new incident. And potentially new? advocate each time? My son won’t/cant speak out or up to authority, new authority in particular, he has learned not to. So it just won’t happen).

      This is a very bad start. I have no idea whether this person will be able to stand up to the well honed shenanigins of this LA, or if this person any good. ..for they might be?….but I would not ring again?

      I had just hoped for a mutually valued relationship, built in a very brief handover, a transition from me to them. But I felt the door was shut in my face in the first conversation.

      So…..I am back on watch?


      • Liz. permalink

        Where does this idea that it is “not our business” COME from? Of course any independent adult has the right to say that they do not want a parent to be consulted – but other people don’t have the right to decide that on their behalf. If your able-bodied son wanted your support, I don’t think he would take kindly to being told he couldn’t have it “because he is an adult”. It is a very weird notion of the dynamics of supportive families.

        Like Mark says, it is nice sometimes, and a relief, not to be needed. But to be excluded when you clearly are needed – who does that benefit, exactly?

  2. Sally permalink

    Have a good trip. If there’s time, please tell the Social Workers carespeak to avoid-bring your list!

  3. Tina permalink

    Mark you are an awesome advocate for our “kids” worldwide – good luck with the trip. I am following your blog from Perth Australia.

    • Pauline Thomas permalink

      Mark your life with Stephen sounds like one long musical. I can relate to all of it. My son’s life would have been unbearable without his 45’s, cassettes and videos. We cannot bring him into the 21st century and introduce him to digital music equipment, because he can only independently use these oldies on his own. Independence is what he most wants from life, even if it only means he is able to put on his own music. Enjoy your break/work. You so deserve it.

      • Liz. permalink

        In my 70s, I am weirdly proud of my extensive knowledge of certain television series and pop music ranging from the 80s to the present. I do wish some of the latest singers wouldn’t opt for weird spellings sometimes – like Kei$ha. My daughter’s range is very broad, and she can go from discussing generations of Royal Ballet dancers to whoever is new on the latest “Now” collection in a blink. Anyone who is around her for any length of time quickly becomes just as knowledgeable.

  4. Carbolic permalink

    Ooh ooh ooh…….can I join Steven for the Blood Brothers re-enactment. I know all the words…..pretty please with a cherry on top

  5. Weary Mother permalink

    The question that a caused most offense/outrage from the new advocate was my question ‘could you tell me a little about yourself’..;I was told ‘I cannot see the relevance’, . My son lives independently, has Down’s, very poor sight and poor mobility. He cannot read or write. He is intelligent and wise and loves life.. He is late middle aged. Over his adult life there have been numerous wonky assessments, duff carers, loads of crises, some of which have required lengthy legal assistance…and me. He is absolutely his own man, but has needed help to retain his independence and choices.. Surely it is reasonable when we/me have done the job, at as far a distance as we/me can manage and protect all his choices, and are about to peg out/know we can in near’ish future, as we(me) are pretty old……. that we/(me)he should know a little bit about the capability of the person, who is picking up our worn baton, to run with it when required? That is, without being shot down (at best) as intrusive, over protective and or over stepping the mark?

    I could have asked: will you (like me) stay the distance when things get really tough?. At what point do you give up and move on? Etc Etc…………….

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