Tuesday, 30 November 2010



I was recently told by a manager of a residential home (not C’s) that because I have organised a Christmas lunch for the parents of C’s home that there must be a need in me to fix people. Other parents have too many issues and I shouldn’t take them on (I was only suggesting lunch!) That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life. ‘That’ he said would be the best thing I can do for C. Stop being a martyr. Apparently I have a build up of years of grief, guilt and denial. I have co dependency issues, control issues and am over protective (maybe some parents have good reason) I should accept that this is ‘it’ for C and not to want any more for him. Staff are not there to befriend ‘clients’ or parents. It is a job. It is not about family. If your son was normal and went to university you wouldn’t know what he was getting up to. Stop trying to save the world. Stop interfering.

All because I mentioned having an Xmas lunch for parents. I'm finding the difference in attitude and expectation of some staff from the world of education to the adult world is huge. There should be a transition plan for us parents!

How can you accept and support our adults if you don’t accept and welcome their family?
Things are changing and with the Internet and social networking these days parents are all in touch with each other – and with professionals. Some of us are professionals. We have access to the latest research. Some of us go on courses and attend conferences. We read books and papers. We write books and papers! Parents can be a good resource. We are the experts. Many of us know the rules, regulations and good practice guides, we rewrite them! Some parents sit on Boards and committees and change policies. We are political. We take part in consultations. We campaign. We run Charities. We got a mention in the Equality Act! Things are supposed to be transparent. We do want more. And as Kev said – we want it for everyone.

We want to work together in partnership.

So yes I do have a need to fix!

What out of date stereotype would you like to change?

I know not all staff think like this and there are many excellent people out there who work really hard with us parents and do want to update the system and the attitudes.

Thursday, 18 November 2010

Autistic with spoons

Autistic with spoons? Autism and spoons? Here’s my attempt at a variation on the spoon theory.

We all have spoons. There are no stereotypes for spoons. Everyone’s spoons are different, everyone has a different numbers of spoons which fluxuate. Everyone uses their spoons in different ways. And maybe your spoons don’t even look like spoons!

I think I know my own spoons quite well, I have learnt to recognise (and respect) them as I have become older. Some spoons I can hide. C seems to know when I have lost a few spoons!

And C’s spoons from motherly intuition and my perception of them over many years I have some sort of idea. But I have no idea how many C has at any one time. He has ones for many more things than I do - noise, light, colour, smell, sharing personal space, things around him, movements, processing, feelings, thoughts, communicating, bodily functions, positions, health, head banging, keeping clothes on, standing up, rocking, flicking, eye poking - and many many others I just have no clue to. Nor no clue as to how they really affect him. Before during and after juggling.

Some days C is better at juggling his spoons than others.

Some days he may have woken up with fewer or more spoons than usual?

Some days some spoons maybe bigger than shovels and C is intensely aware of spoons that he can usually ignore.

Social interactions for C uses up lots of spoons so he very rarely does it and then only if he has spoons in abundance. Making him ‘appear’ severely socially isolated.

C’s spoons do not conform to many NT spoon rules. C’s spoons can be extreme - obvious or invisible. C’s spoons like to keep me on my toes :)

Some days C drops his spoons one by one – if I have been watching closely I can see this happening and sometimes I can distract him, divert him or remove him where possible before he loses too many.

We have both learnt different tactics for clutching on to the few remaining spoons. C learnt to put his fingers in his ears, to hum, to rock, to focus on an object (used to be a chopstick now it’s his thumb nail).

I have learnt where to position him, distract him with my predictable movements or by mirroring him, using behaviours he recognises, or maybe playful ‘ritualised exchanges’ like I kiss him on the nose with my finger. This seems to sometimes ground him (if he hasn’t lost too many spoons by then) or my making happy sounds that he makes. Looking deep in his eyes - Positive and reassuring. Etc

But if C didn’t drop them one by one, if all his spoons just spectacularly crashed and there is nothing he or I can do and he over loads, melts down, fragments – whatever you like to call it. All I can do to help him is to get him to a safe quiet place to recharge/process/pick up some of his spoons.

And I do the same as I also will have lost a few by then.

On reflection there is always something to learn, something I may have missed. And so the next time I try something slightly different (yet familiar and recognisable). We have built on this and evolved our routines opening up C’s world. I learnt to read the function of some of C’s spoons by being sensitive, mindful, watching and listening. It’s been hard work and some things have taken years - but C’s arsenal of spoons that he can juggle is growing and changing all the time - it has been so worth it and now we can go just about anywhere. And try anything.

We have a connection. He trusts me even when I get it wrong sometimes and drop the odd spoon.

Saturday, 6 November 2010

Cuts and Campaigning

Dear Bendy Girl

I recently went to a fascinating talk given by Neil Coyle Director of Policy of the Disability Alliance (DA). Their aim is to break the link between poverty and disability.

Some of the talk was around the background of where we are now and how the Dynamic Benefits led to the creation in Government of the 21st Century Welfare and their principles.

As you know the ‘potential improvements’ to our benefit system include a Universal Credit – a one size fits all model. A savings generator rather than to transform people’s lives and tackle poverty.

No mention of support, genuine job opportunities, supporting employers, sustainable or even enough work etc etc (Statistics can be found here).

We are all in this together! Disabled people did not start in an equal position. Disabled people are twice as likely to live in poverty already.

The DA need real people to speak up before the total effect of changes has such a devastating impact – case studies are essential.
So Bendy Girl I sent Neil Coyle your The Broken of Britain (A collection of real life stories) website which he said was very useful and he would be happy to add something to the site when they launch the research on DLA. (Dont worry i will remind him!)
So if we could urge people to send you their personal stories it could help make a difference.

Neil also urged that we all of course work with local councillors and MPs to highlight the impact of the proposals.

ACT NOW has put together an Impact Assessment report regarding the proposed cuts in public spending on people with Autism.

Disability Now warns of hard times ahead.

And the Ouch message boards are bursting!

Draft letter you can adapt and send to your MP

  I recently went on a one day Campaigning course – here is a brief summary of my notes which may help anyone wanting to take any of these issues further.

Good campaigns run by local people can make make a difference.

You need to ensure your aims and objectives are clear and concise.
SMART - Specific, Measurable, Achievable, Realistic and Time-bound

Gather accurate information and evidence to support your case.
Examples include personal stories, questionnaires and surveys, good practice examples and relevant local or national statistics.

Timing is important, find out when to start influencing the decision makers.

Lobbying your local council. You can influence your council in a number of ways:
Contact your local Councillor. Use the Opposition. Use the Local Paper. Submit a Petition: Lobby the Leader, Executive and Cabinet, and use your local MP Locally and Nationally.

Use local media. When it works well, local media can be extremely useful in advertising your campaign to a wider audience. It can influence key decisions made by a range of people including, local councillors, MPs, business people and even help change public opinion.
It’s all in the first sentence – you need to sum up as much of your story in one sentence as possible and answer the questions: who, what, when, where, why and how. This is a great way to check if your story is news. If you can't sum it up concisely in a few lines of text, then perhaps it's not a news story.

Have a good sound bite. You can either put this in a quote in a press release. It can capture the imagination and get you more coverage and impact.

Letters to the editor. The letters to the editor pages are some of the best read pages in local papers. If you do send a letter, brief friends and colleagues so that when your letter is printed, they can respond and keep the story going. If the newspaper receives a number of letters on one issue, then it might prompt them to do a news item or a feature.
Phone-ins.These are the radio equivalent of letters to the editor.

Campaign stunts are effective way of getting media and public attention.
C and i will have to think of something! Any ideas?!
Hope all is going well Bendy Girl
Love Casdok xx