THE COUGH IS SPOILING MY GREEN - 09 02 13

I was told of a bright verbal child with severe Autism who became very distressed in class and cried out, 'the cough is spoiling my green'. The child was taken to a quiet room to calm. He explained very clearly that he knows we call the days of the week Monday to Sunday but that he sees the days of the week in colours. He moves through colours. His favourite colour is green. Wednesday is green. He wants nothing to spoil the green. Screaming and coughing are the two worst things in his world. The Teaching Assistant was coughing. It was Wednesday.

My child is non-verbal and even though knowing someone is about more than speech I know very little, nothing, about what my son thinks after 10 years of loving him. Why does Axel do what he does, what motivates him, what does he fear and why? I have no idea of his sense of future or whether he imagines it and if so how? I can know what he eats today and that he 'likes' being chased, tickled and massaged, where he chooses to sleep, that he climbs, that he bites himself. Beyond these things, I can only imagine why he does what he does and I know nothing of what he thinks about. I am limited by my Neurotypical imagination. By being me.

If Axel points to a picture of the shops, is it because he wants apple juice or to get out of the house, because he fancies a run or because he likes to sit at the back of Sainsburys. Does he like the back of Sainsburys because he likes the lighting, the hum of the refrigerators or the smell of the bakery? Or something I can not even begin to imagine. The staff are very helpful and will bring me a kick stool to sit on whilst I wait with him. Why is a bath ok one day and then terribly not another? How well do we ever know each other really but this is so very extreme. Without this knowing, it is so hard to help or know what fun might be. I know he likes something about glass elevators and he did enjoy the Brighton Wheel for his birthday treat but I can sense my ability to glimpse into his world is so very slight. 

Axel is very bright. He would never not play the tv in his bedroom because it is bed time so I would lug it out to the landing where there's no plug socket. I found him out on the landing, changing the volume with his toes having plugged it in with an extension flex from the under-stairs cupboard. I have never showed him such a thing or where it was stored. 

I imagine his world is fascinating and, I fear, frightening. I wish I was better able to tune in to his world. To be with him.


For those of you who have or care for completely non-verbal children... What do you experience?