Sonia and Peter

19 March 2013

Sonia and Peter

story_1Sonia and I have been participating in the LEAD forum for a couple of years. We have three children (7, 5 and 2) of which our middle child has ASD (Autism), a diagnosis that began when he was two. He now attends one of the Boroughs dedicated teaching provisions embedded within a mainstream school, where he is very happy.

As a family we are still coming to terms with living with Autism. It is a condition as equally fascinating as it is frustrating, and has impacted upon every part of our family life.  Going out, especially to somewhere new, is always a trial for our son and a constant source or bemusement to the wider public. Try explaining to a random stranger why your child has stripped off in a McDonalds car park and is covering themselves with garlic mayonnaise – it defies simple answers. A long standing obsession with buttons and zips never ceases to alarm the owners of the trousers to which they are attached. There is, of course, the more upsetting side – the anxiety attacks and meltdowns and the obsession with switches that possibly caused an electrical fire. But that’s just life with ASD, laughter and tears in equal measure.

We are, in many ways, fortunate to be living in Kingston upon Thames – it has all of the resources that living in a major city can offer to a family with a disabled child. However, this also creates a bewildering array of professional health services, teachers, social workers, support groups and charities with overlapping responsibilities and interests all working with the best intentions, yet limited resources.

The forum acts as a channel through which we can influence decisions and give active feedback to the key professionals caring for our son and his peers and is a common ground in which ideas and experiences can be shared amongst carers.  No one knows what strategies work and what resources are really available and effective more than someone who has been there before.

Uniquely, LEAD brings together parents and carers from a wide range of disabilities and of different ages – helping us have a better appreciation of the challenges other families face and a window in to those challenges we have yet to take on. In particular, the lectures hosted in early 2012 have really helped us plan for the future, thinking about the financial support our son will probably need later in life whilst these open-to-all events hosted by LEAD helped our sons grandparents learn communication strategies that are helping today.

Listen, Engage, Advocate for Disability

Listen, Engage, Advocate for Disability

Working with/for parents & carers of children & young people in Kingston

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