Tuesday, November 10, 2009

dear family...

I've been meaning to write this one for so long that I almost can't write it anymore. I lie awake at night going over and over what I want to say. I think my recent reading of the new book 'Children and teenagers with aspergers:the journey of parenting from birth to teens' has really made me re-focus on my need to do this.

It presents real experiences of a range of families, all who recount the immense struggle of being a parent to a child or young person with a diagnosis of Aspergers Syndrome. Why is it important to read this book?

Well I think it is very easy to fall into the trap of only presenting the best of our children to the world. I am guilty of this because I want people to see his gifts and his strengths, his beauty and his unusual window on the world. I want people to love him enough to help protect him from the harsh cruelties that exist in our society for anyone who presents in a non-neurotypical way. If you don't know what I mean then go back a couple of years in this blog - you'll soon get the picture.

In fact the stories in this book also present a catalogue of failures from the various professional systems that are meant to support our children's wellbeing, health and education. But these stories also recount some of the huge difficulties that present a parent of someone on the autistic spectrum. Of course no one person with a diagnosis of AS will present in the same way as another. What is really evident from the stories are the number of times people deny that there could be anything 'wrong' with these young people other than bad parenting, lack of discipline and the old favourite 'not enough boundaries'. Anyone who has had to engage at any level with any of the support services that are supposed to help us will have had these accusations many times.

Many of us don't have to look further than our own families and friends to experience these accusations. At least three people in our very immediate families do not believe that our son has AS. They find it difficult to see how such a very bright child could not be anything other than manipulative and oppositional.

What is really distressing about this is the absolute denial of our whole life (because having AS in the family does affect your whole life). So these people have no concept of what our daily lives are really like. They only see us when we have made significant planning efforts and taken damage limitation actions to reduce situations that will trigger autistic meltdowns. If they do witness one due to uncontrollable circumstances such as sensory overload, verbal ambiguity or a myriad of other triggers they label it as a tantrum.

I remember my son cowering in the corner of a corridoor surrounded by family members talking really loudly. He was very distressed and covering his head due to sensory overload but couldn't get away because none of the would move. When I tried to explain and asked them to move a close family member said ' oh he's just having another tantrum'. This enraged me. Why can't you bring yourself to believe me/us. I have reached the point now where I feel like saying 'OK - well you take your small and narrow minds elsewhere - we haven't got the energy to deal with you'

I'll go away and focus on the things that really need my energy, such as when my son can't sleep because he thinks about death all the time, or when he is self harming because he hates himself and what he does so much, or when he can't control the meltdowns and becomes abusive or violent. You don't see all this and you don't help...

And that hurts quite alot.

To go back to the reason for this post - it is not easy to say those things about my wonderful son. I do sometimes feel incredibly lonely, tired and helpless. But if I spend my life hiding them then I am denying our lives in a similar way that you do. Well excuse me - but this is our life...

Get used to it or clear off...

A recent BBC documentary also highlights these issues and include a couple of families with children with autism who display violent responses - available to watch for a limited time only 'When a mother's love is not enough'. It looks at how easy it is to lose control and harm the child you love, through exhaustion, sheer loneliness and frustration. It also highlights the ridiculous and failing support system that the state offers to parents of disabled children.

Monday, November 02, 2009

do educational institutions have a future?

This is a post about one of the sessions in the JISC Innovating Learning 2009 Online Conference.

We wanted to have a session which stimulated discussion around some of the technological, social and organisational issues that are likely to affect the future learner, teacher and institutions. So we found three people to help us with this task. Martin Weller, Graham Attwell and Rob Howe have each taken on the task of producing a short video to offer us a selection of possible futures. do educational institutions have a future?

Martin has looked at this from the angle of the academic/scholar and engaged in a conversation with some of his future selves. I wont spoil the pleasure of watching it by describing any more but the beardyness seems to have caught a few people's imagination. Some people have also responded to his blog post and video by making their own 'conversation with a future self'. This could be catching - I will try to list these at the foot of this blog post in an attempt to pull them together.

Rob Howe has offered us a range of futures through the eyes of four learners and more beards... Personally I really love the last one with the TRIPE invention which involves tingling brains and Tesco's. He also links us to the JISC funded Learner Experience work too...

Graham Attwell offers two starkly contrasting visions of how institutions will cope with the various economic, polictical and technological drivers. From the abolition of JISC and courses costing 20k a year to a federated open innovation approach. Personally I love the 'aesthetics of bots sport' course.

John Traxler Director of the Learning Lab and Professor of Mobile Learning at the University of Wolverhamptonfrom will be facilitating the discussion during the conference who brings a wealth of experience as both an online and face to face facilitator.

I look forward to the discussion around this session and would encourage people to register with the conference to ensure that you don't miss it.

In fact we will be offering free spaces to the best three responses tagged with jiscel09 so get your beards ready and show us your future vision...

Inspired by the videos Grainne Conole has set up a very popular cloud on the OU Cloudworks site.

See also
Alan Cann, Leicester University
Very apt Halloween special vision of the future

Gill Clough, Open University
Interview with future self envisions a pink future; )

Short film for CLT's 2009 away-day. Asked to imagine the state of e-learning in the year 2020... Devised by and starring Jane Secker, Steve Bond & Athina Chatzigavriil

Innovating e-Learning 2009

Innovating e-Learning 2009 - Thriving, not just surviving

Innovating e-Learning 2009, the fourth JISC online conference, takes place on 24-27 November 2009.

Now a major event in the calendar of conferences on learning, teaching and technology, Innovating e-Learning focuses this year on the theme of Thriving, not just Surviving. The programme reflects the challenges facing further and higher education institutions in the 21st century and features leading thinkers, broadcasters and academics, such as Charles Leadbeater, Nigel Paine, Helen Beetham, Rhona Sharpe (Oxford Brookes University), Peter Bradwell, (Demos).

The 2009 conference has two themes:
Finding the way, which focuses on focuses on exploring guiding principles for technology-enhanced learning and teaching, and
Meeting the challenge, which explores the integration of technology-mediated practice under specific agendas such as meeting the needs of employers, developing sustainable and external-facing strategies for curriculum development and engaging stakeholders in the design of learning spaces.

Delegates from the UK meet in the asynchronous conference environment with colleagues from overseas, making this a particularly vibrant and accessible way to attend a conference. Last year’s delegate list topped 400 and included representatives from 14 countries.

New this year is the Have-a- Go area, where delegates can try out innovative new technologies demonstrated by JISC services, projects and other agencies. Representatives from the JISC RSCs are set to provide guided tours in Second Life, and James Clay (Gloucestershire College) returns by popular demand to take up the role of conference blogger.

Innovating e-Learning 2009 takes place in an asynchronous virtual environment which can be accessed at a time and place that suits you. The keynotes, however, are delivered live in Elluminate, a collaborative web conferencing platform.

For booking and further information, visit www.jisc.ac.uk/elpconference09

Delegate fee: £50 per delegate

word press madness

I've been having a go with wordpress as an alternative blogging mechanism and have transferred the wedding photography blog to one which uses a photo blogging template.


I'm also working on some other sites as I've just bought a few domain names. I'll post these soon. Most exciting too is a new portrait photography website as we've decided to move into that area of work too. It's in devenlopment - haven't even got the price list in yet...


Here is one of my current favourites of the boy...