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Resonances of Mrs Slocombe’s Pussy

July 23, 2013

Here is a bit of a collector’s item – a positive post from me!

It’s been a shit three days, mainly due to not being able to sleep. It’s not the heat that has kept me awake – more the heat of our housing problem. For the last three nights, I have on average 3 1/2 hours sleep per night. My mind catapults between two thoughts and then I get caught up in the feelings of those thoughts. I start with: “What will happen in 24 days if Hillingdon are lying to me again and they don’t have a place for Steven and I to move to?” That then triggers off massive fear and loads of questions about buying furniture; arranging support for the day of the move etc etc etc. Then I swing over to the thought: “What happens if I win my housing benefit appeal?” And that brings up great rushes of anger. Three years ago we had a year of hell because Hillingdon didn’t follow the law. Surely, the last ten months of hell haven’t been because they couldn’t get the law right again.

Where’s the positive bit I can hear you ask.

This morning I got up determined to do something. I had no idea what but I loathe feeling so powerless. The last few days I have been phoning chain stores in an attempt to order some furniture for the next flat but none of them would accept an order without an address – neither would they take an order and store the items until I could give them an address. It didn’t matter that time has already ran out for some items – we wouldn’t get them before we move.

So I decided to go to our local department store, Randalls. It is an incredible throwback to a more innocent time. The men’s hat department is next to the dining tables; they have half day closing on Wednesdays; they even have a small selection of antimicassers. I love the place. I love the smell. I love the staff. I love the idea that as I enter the shop, I may be approached by a Captain Peacock, shop walker, who takes me under his wing for the duration of my shop.

It went like a dream. The assistant agreed to sstore all the items for me as long as they were in stock. I just need to phone him a couple of days before I want them delivered and he’ll organise a mass delivery. As I brought Steven’s sofa from there a while back, he gave me a 25% off voucher and when he came to tot up the final bill, he knocked a further 10% off because he’s heard about our case and he wanted to help in some way.

Isn’t that fabulous? This tiny oasis in the heart of Uxbridge, with a massive heart and decent values that have meant the shop has survived over 100 years. You couldn’t possibly imagine that treatment in DFS, Argos or any of the other chain stores.

And that was that. I went off with my shopping list and ended up with 2 beds; 2 huge wardrobes; a dining table and chair; a smaller sofa and a desk. Thats is us sorted for whenever the council come up with an address for Steven. All I need to do now is order the kitchen equipment and perhaps another set of storage shelves.

On the way to the shop I bumped into Wally Kennedy. Wally is a former councillor and I met him for the first time back in 2010 when he was a great support in trying to get Steven home. He does so much great work with people in terrible housing crisis and I often see him at his “office” – a bus stop outside the Civic Centre. We chatted and as we parted, Wally put his hand on my shoulder and said: “You’re an extraordinary man Mark – keep strong”. It really choked me up.

It’s funny but in our modern world, people like Wally and Randalls department store are easily dismissed as dinosaurs. But by christ, I’d rather have an ounce of their humanity than the awful inhumanity I encounter in the social care world.

It’s been a mighty fine day.

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From → Social Care

40 Comments
  1. Really refreshing to read this, I’d never heard of Randalls before but will certainly look in there next time I’m in Uxbridge.

  2. swanarchie07 permalink

    Mark your An inspiration to other parents and I love your blog. One day I would love to be able to tell my tales of socialcare and the injustice they serve this community. I look to your blog and think I dont want to go down that route but its already started and he is only 6 but I am a fighter and I wont be treated like they think they can treat us.

  3. Hi Mark. I arrived here after reading your guest blog on the BBC website. I think Wally’s right – you ARE an extraordinary man! The way the system treats individuals like your son makes is simply horrendous. Steven is lucky to have someone like you fighting his corner. All power to you!

  4. Drax permalink

    Simply wonderful.

    Hurrah for the niceness of people.

  5. Jonathan permalink

    I too have arrived here via the BBC article. And I’m already inspired. It’s heart warming to know that despite the overwhelming tide of disinterested and uncaring organisations who are more concerned with making people fit their systems than actually providing any sort of service, there are still those who care and make an effort.

    It’s like finding an oasis of hope and generosity in a desert of indifference…good on Randalls and well done to your man Wally for just being human. I hope there are many more out there like them!

    Stay strong, Mark. You’re talking a lot of sense in a world full of pointless drivel.

  6. Junwy permalink

    Steven is lucky to have you in his life as a loving father and very good friend, hold on in there. Please believe there is humanity that tries to get past red tape, policies and procedures. Be as happy as life allows you both to be 🙂

  7. James permalink

    Hi Mark, I too am here via the good old Beeb. You talk a lot of sense, the care system and the NHS / education world in general seem so wrapped up in their own pointless world of management and targets that the entire point seems to be to make the results fit the system using convoluted language to mislead us into believing those in charge are doing their job. All they are doing in fact is safeguarding their own careers by making themselves an elite. One day they might wake up and realise they need to create a transparent system that is treats people with dignity and is measured by peoples happiness and ownership of their lives.

    Well done you for writing about this so eloquently in the first place, You’ve inspired me, you’re a strong person and a good dad.

  8. I did a social work degree recently. The social work course uses gobbledygook which barely masks a deeply nasty set of arrogant attitudes. I argued with the Professor who insisted that ‘We didn’t need to know’about the benefits system!. It’s nothing to do with us.’ Yeah. ..The course exemplified a ‘Them and Us’ attitude to ‘service users.’

    Part of the problem is that the degree is run by sociologists and burned- out social workers. The degree was a mishmash of ideological stances rather than being based on research of what works.
    So we didn’t cover domestic abuse, people trafficking or drug dependency, but we were forced to study Freud, Jung and ‘Identity’, loaded with meaningless but high- flown jargon.

    As you know from bitter experience, social care uses ‘newspeak’, which Orwell coined to explore the abuse of the English language, but which also reflects the abuse of real people. So ‘social care’ language reflects the exact opposite of reality. [Lack of] Care in the Community. [Care] Homes. ‘Care’ itself. ‘Unconditional’ Positive Regard’, which behind closed doors means the exact opposite.

    If you haven’t considered it already, how about writing a book, ‘A Grammar of Social Care from the sharp end’? Some extremely unpleasant people sailed through the course, while any one with any sense of decency struggled with the doublespeak, which pervades and distorts the reality of people’s lives and their experience of ‘social care, particularly now with the Coalition’s really foul policies, targeting and blaming the poor, the ill, people with disabilities.

    It’s important to challenge the dishonesty in social care and politics. Speaking truth to power.

    I was thrown off the course a few weeks before the end of the third year, ‘too disabled to be a social worker.’ Which, in retrospect was probably a blessing in disguise, despite the £20,000 student loan.
    Because frankly, Social Work…doesn’t.

  9. Emily permalink

    I found your blog via the BBC and will now be following on a regular basis. I have a son of 4 that has been diagnosed with autistic tendencies. I live in Cyprus and the help here is non existent. You have to pay for everything.

    Keep up the exceptional work. Only through awareness and support will things change.

  10. Andy permalink

    Like so many others I was stunned, enthralled, horrified, touched by what I read on the BBC this morning. Your life, and your sons, has immediately become something I want to know about on an ongoing basis.

    If you need help – some of us are still human beings. I’m not above getting in the car and standing outside your local council offices to change something for your son.

    Be strong – you resonated with a lot of people today. You did your son the latest in a long line of services. If you believe in a God, I’m sure he believes in you.

    Peace.

  11. Chris permalink

    Just come across your blog from the bbc’s website, have to admit I hadn’t heard of your case previously but having now read it and some of your blog posts you seem a person of incredible common sense (something which all of the social care systems seem to have non of!), compassion and intelligence. I have an autistic step son and my wife is also disabled so I have had a few wrangles with the social systems but nothing quite on the scale of yours! Its great that you had a good day and I hope you and Steven have many more! Keep smiling and dont let the buggers get you down!

  12. Pat permalink

    Again, I’m here courtesy of beeb. What a great guy you are, Steven is lucky to have you to fight for him. Councils and social workers are so PC it’s way beyond belief. I’m keeping my fingers crossed you get good news about your new home soon.

  13. Steve permalink

    I was so moved by your story on the BBC that I felt I must leave a comment
    I have recently come to the conclusion that there are two types of people in this world. Those who care only for their own self interest – and those who care. Your son is incredibly lucky to have a father who cares. If the self-interested in our country ever look at themselves and ask “What am I, what have I done?” I doubt that they will have much to answer except say ‘make money’! You can hold your head high and say “I cared about more than me!” Thank you for making the world a better place!

  14. I too read your BBC guest blog. I’m a disability historian, and as such am always shocked at how inhumane our modern world has become, despite so-called advances. Reglemented ‘care’ is presumably intended to be applied fairly and equally across the board, according to set criteria, but all such a system achieves is de-individualising needs and de-humanising real people. It’s probably no consolation for you in your present situation, but way back in the fourteenth century an Arabic scholar called Ibn Khaldun already made a few comments about people we would today call ‘learning disabled’, he just called them by non-PC names. I’ve quoted this below, if you pardon the ‘wrong’ language and labels. Your council and care professionals might like to note that this medieval chap already argued that absence of ‘rationality’ (would that be mental competence in modern PC-speak?) did not mean absence of humanity nor lack of a sense of reality:
    “The rational souls of such people [“fools and imbeciles”] are not non-existent, nor are they corrupt, as is the case with the insane. They merely lack the intellect that is the basis of legal responsibility. That intellect is a special attribute of the soul. It means various kinds of knowledge that are necessary to man and that guide his speculative ability and teach him how to make a living and organize his home. … Now, a person who lacks that special attribute of the soul called intellect still does not lack the soul itself, and has not forgotten his reality. He has reality, though he lacks the intellect entailing legal responsibility, that is, the knowledge of how to make a living.”
    Good luck to you and Steven with your struggles!

  15. Lisa Kenn permalink

    So glad I stumbled across your blog. I am in a similar situation. I pulled my daughter 24, out of residential care 2 years ago and now she is safe and at home :)). I just read your ‘jargon’ post on the autistic society’s website. Absolutely brilliant and spot on!!!
    Warm regards and I wish you good wishes :))

  16. Me too, here via BBC and I am glad I have found your blog and I am looking forward to reading more.

  17. Armand permalink

    Saw your article on the BBC and I wanted to comment on your site and what it is that you do for and with your son. To say that you are an inspiration would be a collosal understatement. You write brilliantly, honestly and with fierce love. Because much of what I feel had already been expressed in the comments of others I will keep it simple: I am sending you both good vibes and the very best wishes of success as you continue to deal with the challenges of simply being and living as you desire to do. Peace & Love.

  18. Anonymous permalink

    I also stumbled across your blog after reading your story on the BBC website.

    I don’t have anything to say that adequately expresses my sentiments so I say nothing more except that I wish you well.

  19. Steve permalink

    As the parent of a 2 year old newly diagnosed with autism it’s deeply inspirational to me to see someone like you fighting your corner for you and your son. I hope I will become the kind of bloke you are and never give up and never let my son down. All the best.

  20. Mark, I have just come across you via the BBC! You are an inspiration to so many and a great writer!
    I know what you mean about local shops, even department stores having far more soul than the big chains.
    Keep it up, and good luck for both you and Steven.

  21. christine lay permalink

    I’ve just read your story for the first time ,again courtesy of the BBC. I’m touched that their are still such good, caring people as you in our world Mark. Lucky are those people that know you personally. Your son is lucky to have you as father and friend. I wish you both all the best for the future….Chris

  22. You are an incredible person Mark. I read your piece on the BBC website and was horrified at the way the use of politically correct bollocks only seems to demean and dehumanise your son. I pray you take heart from the messages of support and still believe that there are some decent human beings in the world.

    Keep strong and keep the faith.

  23. angela permalink

    Hi,
    your not alone, even if it feels like it………some days are good and some days well you already know BUT…. tomorrow is another day..life really does go on…you love your son and its amazing….
    and i’m pretty damn sure he loves you.
    I want to say stop worrying….almost impossible…..
    Just get through it..one day….at a time.
    I was told to stop living for tomorrow and enjoy today, especially the small stuff, I hope I can pass that on to you.
    Good luck. x

  24. Sara permalink

    Mr Neary. I am sitting in hospital and laughing out loud in the chemotherapy suite at the poignant but brilliant writing of your blog. When I’m not dealing with cancer I have been a carer of someone going through every irrational, wasteful and unhelpful intervention the mental health system has to offer so believe me, I know what you are talking about. How to change??

  25. Robert permalink

    Another BBC tourist! Your article was moving and made me consider things I remained ignorant of before, you must be a very positive inspiration to many. Best wishes to you and Steven.

  26. Trevor permalink

    Hey Mark,
    just discovered your blog [thanks BBC] my boy has is 5 and has classical autism. Thank you for your blog, great respect for what you do; hope I can live up to my boy’s needs as he grows older , as you continue to do for your son.

  27. Chris permalink

    You are very much an inspiration. My mother is in her 80’s and still caring for my sister who has learning difficulties. She/we have had to fight and are still fighting for the care that we feel is right for her. They say it’s your choice but only if you pick one of their providers. I pray that my mother will be able to die in peace knowing she has achieved this. Your son is so lucky to have you looking out and fighting for him. God help those vulnerable people out there who have no one to fight their corner and get stuck in the system.

  28. Jakki permalink

    I too arrived here via the BBC and can only applaud you!

    As a provider of services I know only too well the problems you describe and how increasingly difficult it is becoming to provide quality support to those who need it but are unable to overcome the barriers put in their way.

  29. Another arriving from BBC post.. Mum to two with ASD 20 and 28 yrs and another with moderate LD 18 yrs. I shall be a regular reader as i totally get where you are coming from. What a wonderful dad you are!

  30. Paul Jensen permalink

    Steve, I read the BBC report as many previous readers did. I work in special education with young people who have an array of needs, ASD being but one. Educational institutions like ours often take on a family support role because it would appear support from Social Services has not been adequate. With the summer holiday period upon us, I might be able to spare a day to help you move. I, like you, love spending time with my sons, the eldest having ASD (Asperger’s), but giving you a day of my time is the least I can do to go some way of making amends for the lack of support you appear to be receiving from Social Services. Let me know.

    • Hi Paul. Thank you so much for your kind offer. We havent got a date yet for the move but all of Steven’s support workers have offered to come in that day, so I think I’ll have enough help. Great offer though – I really appreciate it. I have been so touched by people’s kindness. Mark

  31. James Christie permalink

    Dear Mark

    I’m 48, with Asperger’s. I’d like to say I shook up the world but nobody noticed. However, I am now the proud author a of a book based on my own experiences and intended to inspire people with autism.

    Dear Miss Landau

    Chaplin Books (www.chaplinbooks.co.uk)

    I stress it’s commercially published, I’m the real thing, and it got a rave review from Radio 4’s A Good Read last July.

    I hope you might track it down (Amazon) and find it of interest.

    Best wishes

    James Christie

  32. Laura Smith permalink

    Mate, you are quite amazingly strong. And wonderful. You move heaven and earth to get what is best for your son and I am truly inspired. I’m going to pass your blog on to my sister, who has an autistic 4 year old. She’s already starting to see huge problems with the system and I think you will be a true inspiration. Stay strong, a lot of people are behind you

  33. Sarah permalink

    Wonderful

    My brother is autistic and i know how much little “wins” can matter

    U deserve all the happiness n smiles u can get and yea, youre an extraordinary man

    Kudos

  34. Paul Burke permalink

    Hi Mark,

    Saw your story on the BBC and resonated on many levels. I do not live too far from Uxbridge and want to offer practical help. I will happily give you and your son a day’s hand to help you move, when it happens. I have provided my email address on comments. In the event you do not have access to this information, I have selected “notify me of follow up comments via email” so you can give me a follow up shout, if necessary.

    Best wishes to you and Steven and hope I can help.

    Paul

    • Hi Paul. Thats a very kind of offer – thank you so much. We still havent got a date yet but all Steven’s support workers have offered to work on the day of the move, so I think we’ll have enough help. Thank you for signing up to the blog. Mark

      • Paul Burke permalink

        Hi Mark,

        No problem, good to hear that you have one less worry.

        Cheers

        Paul

  35. Mitch permalink

    Dude … I didn’t know you existed 10 minutes ago … but I’ve already seen enough to say with utmost confidence that you are indeed an extraordinary man. Well done for being you; we could do with more of you in this world.

  36. jonathan hall permalink

    Hi Mark, I have just read the article about you and your sons story on the BBC website, I would have left a comment there but that option is no longer available, I just wanted to let you know my thoughts. It says in the article that it was judged not to be in your sons best interest to spend christmas at home with you. I want to tell you that whoever is responsible for that decision must be a childless idiot, I can’t find the words and fear prosecution if I told what I was really thinking.
    However all power to you for fighting a noble and just fight and not giving up. Love is a powerful emotion that cannot be defeated, if anyone stood between me and my children blood would be spilt.

  37. Sadly Randalls is to close at the end of January. It has obviously not kept up with the times and on a quick look in the sale today the merchandise has remained in a time-warp as well as the store itself. A great place to buy a tweed hat, but how many of today’s generation want to buy one?

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