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A New Life & Depeche Mode

May 9, 2015

Feeling thoroughly depressed at the events of the last 48 hours, I needed a distraction, so went through some paperwork at my flat. I realized that it’ll be six months next week since I got the keys. So whilst watching the post election Question Time, my mind started reviewing how the six months have panned out.

For me, it has been a weird experience and its only been in the past couple of weeks that I’ve started to get used to it. For months, I saw myself as living two lives – my life with Steven and my life on my own in the flat. And each time I went from one to the other, I found it very unsettling. Not good or bad – just unsettling. Now I just see it as one life and that is how it is. I’m now able to do things that were impossible six months ago. I can have a long uninterrupted bath. I can watch a whole DVD without having to engage in a commentary. On Monday nights, I have a choice to cook something for myself or walk along the towpath to the pub. I usually chose the latter and don’t have to worry about hurrying back to relieve the support worker who’s shift has finished. Even though this is great, it has taken some getting used to.

Steven has adapted, although I don’t think he likes it. It certainly makes the time we are together more intense because he stores up all his conversations that would previously been spread throughout the day. Yesterday morning, for example, I was nearly late for work because Steven wanted an in depth conversation about the history of Depeche Mode. As Steven loves a back story, this includes a whole narrative about Dave Gahan’s wardrobe in the Personal Jesus video.

Steven’s old social worker saw everything about our relationship through a negative prism. Steven was “too clingy”. I was ” over protective”. And we were “too close”. Too many “toos” for my liking. Since I’ve been around less, Steven does engage with the support workers more, which is great. But he’s never going to have the Depeche Mode conversation with them because they don’t get all the references. They never will and that’s not a criticism – it would be impossible because they don’t have the shared history. My move to the flat has condensed those conversations into a shorter time and that can be tricky. I think it is part of having autism in that Steven has to complete everything to its absolute end. A DVD will be watched, through the end credits until the screen goes black. Nothing is left on a plate. He won’t get out of a bath until the last drop of water has gone down the plughole. Incidentally, this led to another of the big disagreements with the ATU. They saw Steven as being “greedy” or “unboundaried” when he ate a whole tube of Fruit Pastilles in one go. They wouldn’t accept it as a “completion” thing. Anyways, I now have to check if there is enough time to do something until completion before I leave for the flat. Time is more important.

So much has changed for both Steven and me in the last six months and I guess its going to take longer than six months for us both to get used to it.


From → Social Care

  1. Where DO “they” get their ideas of how things “ought” to be? How do they get to be so certain of when “Too” comes into it? Are the people with LD who don’t have anyone to be “too close” to really fair better in their systems? And do they actually go around congratulating parents who are, in their opinion, protective to exactly the right degree, or are we all condemned on principle?

    Yes, our children become adults, and our lives get a lot more complicated. But in a failing system, our choices and those of our adults, do tend to be Hobson’s.

  2. For quite a long while the tactic worked and I was forever questioning myself. Once you realise that it’s all part of the social care illusion, the relief is immense.

  3. Sally permalink

    Nobody should be allowed to get away with”too” or close behind it, “not enough” without being made to justify the comment. They need to specify exactly what is happening which is “too” and what level they would consider better. And why.And how they would suggest implementing that !
    It is not ok to have carers running about anxious and guilty, chasing vague goals which can contradict each other. As I understand it, you were pretty well on your own with care for long periods. If that is “too involved” what did they suggest . Moving in themselves?
    Had you walked from the room when Steven was talking in front of them they would have had you down as “not enough”
    So many decisions when living with someone with LD/ASD are a mix of:
    What we hope helps the person (My son has no friends. If I let him talk for ages about his interests he is happy. I can only try to figure out ways to contain this a bit. Usually with activities. What a pity the day centre has closed.)
    What we are able to do. (If he eats the whole pizza, I am able to do other things and he will be calm.)
    What limits we feel we have a chance of enforcing ( It never works to try to get him to eat less than the whole thing. More of a chance if I make one day pizza day or buy a small size. But he now knows that big sizes exist. Blast )
    What just got past us . (Damn! He found the biscuits and has nearly finished them. He has mangled the chocolate bar in the shop he ran into because I dropped my bag and had to let go for a second!)

    I have spent ages feeling terrible trying to work out how on earth to not be too involved ,set better limits and so on. I have to try to remember to ask the people making these observations how they would go about it This often reveals they have no idea about autism and think it’s just a matter of being firm and all is well. Of they believe that there are heaps of people and services eager to help out which I am somehow refusing.

  4. I will reiterate my question: are “they” conspicuously successful, or do they end up resorting to drugs and neglect? I KNOW I am not perfect; I KNOW it isn’t ideal for an adult to still be dependent on a parent. I have yet to see much that works conspicuously better. Our carers are on the whole terrific – they are stumped as well. In the past, some of those from agencies have been stuffed full of theories that don’t work, or scared to death of their supervisors. The people I know whose parents have collapsed under the strain are seldom better off.

    It isn’t rocket science. Listen to families, give us help and advice, stop assuming that we are all “too” something undesirable.

  5. Sally permalink

    You are so right. Of course we know it isn’t good for an adult to be pretty well entirely dependent on an aging parent ! Of course we want our children to eat healthily, have friends ! Of course we know that limits are necessary for all sort of reasons
    Now, can this be brought about? I have been involved in so many cycles of behaviour management training and while there was some good stuff ,nothing solved the major problems. That really had to do with things which take money and thought. Extra help, carers, activities etc.
    Anybody who says “too” is suggesting not just that it isn’t desirable, which we sometimes would agree with, but that it can be done differently. Great. Let’s hear exactly how.

  6. Pauline Thomas permalink

    The people who say “too” anything when offering criticism about the parenting skills of families looking after someone with any intellectual or physical disability (or even both), should perhaps try and stand in that parent’s shoes for a week or maybe a day would be enough before they would be tearing their hair out.

    Sally and Lizzie are correct in their views. Shutting down day centres and paring down services which were enabling parents and their loved ones to get a little bit of respite and a chance of a life which people who are not carers take for granted, have so arrogantly been denied them by the very people who are dishing out advice on how to cope with the fallout.

    The introduction of the White Paper Valuing People was instrumental in demonizing parents whose sons/daughters used day centres. They were considered to be using the centres has free day care. They said that day centres were segregated from he community. They forgot to say what would happen to the families that used them when no alternative was forthcoming. Pass me the Prozac please.

  7. junkygirl permalink

    My 3 year old son is just in the process of being diagnosed with high functioning autism. I just read your blog post on the BBC website and was relieved to know I am not alone in my thoughts and opinions. It annoys me when professionals pick apart and analyse our behaviours, especially what is entirely normal for a parent (to be worried for their child) and what is normal for a child (to be affectionate and clingy. Hell I’m 27 and I speak to my mum about 5 or 6 times a day and see her 3 or 4 times a week!) I am very glad I found your blog and will now start to follow. The election result has left me feeling more isolated than ever and in great fear for my sons future. And as for Mr Bean, that is my sons favourite!

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