Julie's Story

The following talk was given at East Cheshire Crossroads Public Meeting in November 2008 by Julie Alexander.

My youngest son David was diagnosed with autistic spectrum condition at 3 years of age. This affected his speech badly, as it was combined with dyspraxia, and so radically delayed his development. David began to talk a few weeks before his 7th birthday, the problem was so severe.

During the past 4 years, David has experienced many aspects of his life in the same way as his older brother. He goes to the same school, he is part of a loving family, he has birthdays, Christmas and holiday trips. On the surface and to the outsider, Davids life differs very little from James’ as he has a sense of humour, he is lively and intelligent and can appreciate most of the world around him – he has one or two interests, enjoys good health, is active and experiences a good quality of life.

However, David, like many other children battles with a hidden disability – his problems are not always obvious and the solutions not easily found. David does not find it second nature to play, to share, to join in – to search out the new and the different – to experience. The joke is not always obvious to David , neither is someone else’s distress, confusion, annoyance or intolerance. David has difficulty reading body language, facial expressions, summing up of social situations or assessing the mood within his environment. David is inclined to obsessive behaviour and strictness of routine. He is learning well all about these things – but that is what he has to do – LEARN! It is not instinctive to David and children and young people like him. As we learn academic subjects David will also have to learn social ones. He has to be taught strategies and how to incorporate them into his life so that his world meets that of the neurotypicals (i.e US!) with as little adverse effects as possible.

Until you have or work with children and young people like David, you are unaware of how much we as human beings develop naturally without the interference or instruction of another. We learn quickly from those around us and we gain many skills as we do this – skills which you and I don’t even realise we have gained and use everyday! These skills are vital to our ability to respond well to the community around us and to live, work, communicate and socialise in it. Without them a huge gap is left in our knowledge of the world and its inhabitants. The human race, however, is a very diverse one– the complexities of personalities, cultures, religions, race makes it very hard for us to grasp and to deal with it. It is nigh on impossible most of the time for people like David UNLESS they receive a lot of support and guidance and from an early an age as it is possible.

Crossroads in its caring role has stepped in to help us as parents of children like my son to fill this gap and to bridge their view of the world so that we can link it with ours. Crossroads have successfully obtained funding to allow social skills classes to operate once a month within East Cheshire teaching the intangible skills which our children cannot source for themselves.

The sessions last for 2 hours – aimed at two age groups and are run by SALTs. Based around play and within an informal and relaxed framework they cascade social skills to the children and young people. To date they have attended 3 sessions and have looked at aspects of personality traits, facial expressions and general body language. This may sound very obvious subject matter but consider for a moment being with a group of your peers and being unable to take a cue of when you should speak, when you shouldn’t, what tone of voice you should use and what words are appropriate to a situation and , most importantly, what it all means!

The parent support group SPACE, for parents of children with Autism which I am involved with is indebted to Crossroads for all the efforts the scheme has made to obtain this funding and then put in place these group sessions which can only help an already vulnerable group.

Julie Alexander

Martin's Story

Martin and Sidonie

Like many carers I didn’t realise I was one at first. My wife Sidonie, an exceptionally fit and healthy 59 year-old, was diagnosed with an asbestos-related pleural cancer in 2004. We knew from the start what the outcome would be - mesothelioma is invariably fatal and her younger brother had died of the same disease ten years earlier.

There followed the most amazing roller-coaster two years as Sidonie fought to get the most out of the life she had left. Caring extended from the scary days when she returned home after what was described as “extreme surgery” in Leicester, to shepherding her down on skis only a year later, breathing hard on her one remaining lung, from over 11,000 feet high above Zermatt - she loved her skiing and wasn’t going to give up.

Her final decline was mercifully quick. She had been through so much in and out of various hospitals, my children and I were determined that she should be at home with us for her last days. At this point there was another revelation - Crossroads. With daily help from their excellent care support workers we were able to keep Sidonie as comfortable as possible and also find time to carry on with work commitments and domestic activities. Crossroads proved to be a vital and much-appreciated stepping-stone in my journey as a carer.

Sidonie skiing in Zermatt

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