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  • Martha


Updated: Apr 6, 2019

Last night I rearranged my kitchen.  Not drastically but I’ve had a chuck out and put a few things in different places.  My son and his father had gone on a long journey to watch a football match and my daughter was sitting wide-eyed in front of the television. I seized the moment – there have not been many in this long summer holiday.

They returned at 10pm.  At 10.10pm I walked back into the kitchen to find that each item and appliance that had been moved had been returned to it’s previous location.  Nothing had been said, nothing needed to be said, the kitchen had simply been corrected.

When my boy was 4 and I was still struggling with toilet training him, I decided that the incentive should be something for his wooden trainset.  Success was measured by stickers on a laminated reward chart with the photograph of the reward velcroed onto the bottom right hand corner.  We started ambitiously with a £13 ‘train washer’.  Before long I realised that my carer’s allowance was not going to accommodate such lavish recompense and we switched to interesting-looking junctions and then, eventually, individual pieces of track.  It can take a long time to train a non-verbal child as you must first establish cues and try to explain why it is a necessary change. Change… my son’s most formidable enemy.

Before long the trainset had swelled to gargantuan proportions although my boy would only use only a few pieces at a time.  I thought I’d step in and help him as it was clear that he was finding it difficult to use the new pieces.  One morning, after dropping him off at school, I embellished his arrangement with all the exciting new accessories – stations, train sheds, extra bridges, turntables and exciting twists and turns of the track. It looked fantastic and I could not wait until he returned home.

He hadn’t had a great day at school and was mightily wound up.  It took us about 10 minutes to walk home instead of the usual 5.  His schedule was waiting for him when he got home and he knew it was time to play.  I went to the kitchen to get him a snack.

Crying and screaming pulled me back.  I ran into the playroom to find him tearing up the track, frantically throwing pieces back into the box.  He was in a frenzy, a desperate meltdown and nothing I could do would calm him down.  It took him about 10 minutes to recreate his original lay out.  Every single piece was exactly where it had originally been and he knelt down, panting and crying.  He was too upset to play with it but, in time, the horror passed.

Last night reminded me that the horror remains.  When I let out an involuntary ‘Oh no!’ he burst into tears.  ‘I’m sorry Mummy, I didn’t know.  Why did you do it when I was not here? Why did you move the bread bin without telling me?  I did not know that the coffee machine needed to be there.  I am so sorry, I didn’t know’.  

He has learned, to some extent, to deal with change every day and accept it as an inevitable part of life.  But he notices it all and it hurts him.  Still.  No matter how hard I work every day to prepare, to minimise, to support and encourage, accepting change is and will always be the greatest challenge of his life.  As he grows we expect more of him, we must, but equally we must not forget that he will always be drawn to that which has become comfortable. Why?  Because the world is so bloody confusing.  

Martha Smith Parent Advocate is a supportive blog focusing on the challenges and wins of parenting children with additional needs. Based in Hampshire Martha runs workshops for schools and other education providers in Surrey, London & Hampshire on how to encourage children with additional needs to thrive in education.

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