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Dad Can Go

December 28, 2016

There’s a massive change happening in the Cowley house. Although it is being driven by Steven, like any change, good or bad, it is making him very unsettled. This change has all the hallmarks of being very positive, although it’s exposition is like crossing a minefield.

Since Steven moved into his new house in October, he is wanting me around less and less. He has fully embraced the idea that it is his house and moves around it with total authority. He constructs his day and is intolerant to any external suggestion to do things differently. A lot of the old routines have gone out of the window.

I guess it started in those three weeks before the move when I had to spend most of the time at the new house making it habitable. Most of the things Steven and I do together had to be handed over to the support workers. Steven found this initially difficult and the outcome has been that some things have been dropped forever. Whilst others have formed a new routine that doesn’t include me.

Take Tuesdays. Prior to the move, Steven followed the same routine for years. Upon his return from his water aerobics group around midday, me and Steven would prepare a C90 tape in preparation for his Wednesday morning disco. Then we would watch an episode of Gladiators together. The support worker would return from 3pm to 6pm whilst I did the personal budget admin and then from 6pm, Steven would do a two hour music DVD session, calling on me to cue up the tracks. All that has changed. Steven now does the tape with Des. “Dad can go to his room”. Then instead of Gladiators, Steven chooses a video and insists he watches it on his own. “Dad can go to his counselling work house”. “Alan can go to the kitchen”.

As I said, this is all good from an independence perspective.

So, what’s the problem? As much as Steven loves his new home, I don’t like it. It’s partly because I’m worn down by the damp, the boiler and all the other things wrong with the place that he doesn’t really notice. It’s also because I get bored spending most of the day in my bedroom. I start to feel a bit claustrophobic. And I’ve got that bloody allergy to the carpet still. I’m wearing my trainers or slippers all the time but the other night I got up for a pee and forgot to put them on and by the next day my feet were red raw again. It’s also very symbolic.

The other problem with “Dad can go to his counselling work house” is that I have to pay the support worker to cover my absence. That’s £30 from 6pm to 9pm and £65 for the Nightshift. This isn’t covered by the personal budget, so I have to find £95 myself. I can’t sustain that.

Back in 2011/12 when I had to attend monthly meetings with the council, their first question would always be, “When do you see the time when Steven will be living independently from you?” I always knew that their hidden agenda was to move Steven to one of their 20 unit supported living flats with pooled budgets and minimum staff. But I could never answer the question because I always felt it should be driven by Steven. When he was ready, it would happen.

The life Steven has now is very different to the LA’s idea of independence. It is genuine independence. It’s not a cloak to hide saving money and warehousing people. Heaven forbid, Steven’s life is what a non learning disabled person might choose for their independence. But for him to push it one stage further and have Dad at his counselling work house most of the week, will expose the kings new clothes of the council’s “independence” policy. Will they joyfully increase his budget by £95 per week so he can achieve the independence he is striving for? Or will it rekindle the real agenda of the supported living studio flats?

Whatever happens, it will be another battle.


From → Social Care

  1. Beverley Teasdale permalink

    I have recently found this, it is a fascinating yet horrendously brilliant record of a journey that I shall have to embark upon with my dear daughter some time soon. Scared doesn’t cover it.. Thank you for your openness, and I hope to learn a little of how to go about this incredibly difficult phase in both our lives. Meanwhile I will read everything here to get up to speed!

  2. Pauline Thomas permalink

    When I, you and many other people have to face up to the fact that having a family member with a learning disability usually means fighting, begging and sometimes pleading for some support. I long for the days when life was so simple. So easy. So ordinary. So like normal.

    We love our children/adults so fiercely and yet even that can bring so much pain. I hope Steven gets his chance of independence and more so, I hope you do too.

    Jimmy Cliff’s song ‘Too many rivers to cross’ often runs through my brain whenever I feel that the task in hand is too much

    Reverie over. My son will be back from his day centre soon. A welcome break for his father and me.

  3. Steven loves his new home , warts an all, how fantastic is that after all the uncertainty of the recent past. Letting you go, you not being central to his plans for his day will work out. Like all parents you will be dealing with the ‘domestic ‘ crises for all of your remaining years as required on call 24/7 . Living with damp is a misery but you will find a way to minimize the problem for Steven. Hope that your personal funds are sufficient whilst the all important review of Steven’s funding takes place.

  4. It’s wonderful that your son’s with you. Great that he’s assertive.
    Battles are better from that position, worse when they’re not with you. Keep protecting what he has.

  5. weary mother permalink

    Thing is, it is all so transitory. The island of steadiness, confidence and security that we all see in our sons and daughters – from time to time.

    We earn it for them – we strive for it – without missing a step – without taking anything – (strive does not cover it does it?) we know and we love them – our magnificent sons and daughters. We feel who they are in our head and our hearts – and we have learned them. We are there only to help them reach further and further – to help them be who they want to be. They know we will steady them – reach them just before they are about to fall..again…Always.

    Unconscious certainties – misthinks – made by well paid others – made on very short aquaintance – steal us – take from us – invent us and our sons and daughters…Shatter us and ours.

    Confidently and carelessly shoot holes right through our real lives – again and again – then they go home – oblivious – to their own.

    Always certain. Of another job well done.

    If we question – this – they take some more.

    Soon they will move on to another place – sans awareness or any insight of damage done… again.

    To do it all over again….to other ‘others.’

    Because of us ….our sons and daughters – in these too rare good times – do not have to notice that they live on an island of glass – for – they know – mum/dad will always be ready to catch them…

    …………………..wont we…?

    • Yes. Writing this as you’ve done is so important. The good professionals reading this, must also be part of putting things right.
      In my case, the odd professional has changed the dynamics or power balance in a positive way, although damage is already done because of what you described.

      • weary mother permalink

        I agree – these joyous islands of hope and happiness have always been brought in by wonderfully brave professionals and inspirational support staff – till they move on/or are moved on – in despair to other jobs. Often to small voluntary agencies – where they can have some influence over the misery and complacency they see every day.

        The thing that saddens me beyond all – is that too many professionals see parents like me – who challenge complacency around poor and neglectful care – as their enemies – and then do their best to destroy us when we complain.

        Wen we should be allies.

        I have wondered why we rarely see a comment here from professionals – countering – or challenging – our real life experience. .

  6. Pauline Thomas permalink

    Yes Weary Mother i agree with you totally.

    My son is now attending a day centre after five years at home with us because he could not come to terms with losing the day centre he used to go to which is now gone, the land it stood on sold off to developers.

    This remaining large day centre still has some staff that worked in the old centre. On the whole these are good staff, caring staff and most of all they are dedicated. The company that are now running the day centre come across as caring too. They certainly are doing their best for my son. I do hope they achieve the goals that they seem to want to achieve which will hopefully give some meaning to the lives of people with a learning disability. It is a mammoth task.

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