12. The battle to communicate properly and be heard by the’Professionals’

My niece had a visit from a ‘professional’ yesterday, one of two teams involved in her care. To date time has been spent talking to the adults in her life, rather than putting things into place for her.  I am normally present at such meetings, however doing temporary work has meant longer hours this week in order to make up for lost pay next week especially as the working week will be absorbed by two bank holidays. The ‘professional’ had received misinformation from the person who sent her, leaving my niece with pent up frustration. She has not yet been taught how to manage frustration or to act positively in light of that frustration and in this case, correct the ‘professional’.

The result was that heat was sent in my direction in the form of a text which began ‘Why did you tell…….?’ Although my sister was present throughout, my niece decided that the incorrect questions she was asked originated from me, the dominant force. The ‘professional’ had tried to investigate why she did not enjoy playing sport, when in fact she did not enjoy swimming. The dislike recently came to the fore when she tried to pummel her ill mother into keeping her off school because of a swimming gala. This is where my role as a Carer as well as Aunt comes into play.  Leaving home earlier than planned I had to talk my niece into attending school. The deal was that I would speak to the Sports teacher about her sensory overload.  In fact there was no need for a big build-up to an explanation as he was fine with it.

When I later chatted to my niece, her reason for disliking swimming was not sensory, nor was it the thought of wearing a swimsuit in front of the whole school and parents, she just disliked swimming. I am aware that she has difficulty identifying her feelings. Not being the strongest swimmer might have meant that she could not take being beaten or she suffers from sensory overload – a trait on the list of spectrum disorders.  Who knows! I hope the key to deciphering negative experiences for my niece is creating opportunities where she can explore what is going on for her,  even if she uses her cognitive skills to do so.

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About 95 Frames per Second

This blog is about my caring journey, looking after family members with high functioning autism / aspergers, multiple sclerosis, getting older, etc. in the midst of trying to function normally. Hopefully along the way you will find my experiences useful. 95 frames per second is roughly the frame rate life runs at.
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