Many years ago, a practitioner sat in my home – perfectly groomed – and stated that she understood what my life was like. I knew that she could empathise but not understand – not unless she was a mum of a child with special needs too.
In order to deal with my frustration, I produced this: “Today Video: My child has a diagnosis” – this video has had over 20k hits on YouTube now and it is something I very proud of. It has been used in Australia, USA, Canada as well as here in the UK by families and practitioners to explain how it feels to be in the Special Needs Minefield.
I know how difficult life can be and a lot of the examples used in this video are personal ones. There are many though from other families who were all too happy to explain and share what their life is like. Often, there are so many things we chat about but may not appear in case notes. Or perhaps they appear in one set of case notes but not every set. We all know how poor communication can be between departments, or let’s be honest how poor they can between practitioners who share the same office.
Communication is a real issue for families and also assumptions made about us due to our background, education, parenting style or our child’s disability. As often as our children’s labels provide certain assumptions, the same practice is made for parents.
I would love to hear what you think of the video – I also have one, created later, for parents. What parents need to know – please check it out so you realise you are not alone.
I am constantly updating this video to deliver at workshops and conferences so tell me about your today if it isn’t covered in there. Let me share your story with others.
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