Try to imagine being him

Sol J
3rd January 2014

Seth signing


Once there was a little boy, a bright and shiny as a button. He laughed and sang and the whole world glowed with his presence. He was similar to his peers until language began to be of more importance, then he fell behind and was confused, and then sad.

Never again did my bright, shining boy emerge from this cloud of difference. Never again did he catch up with his peers.

My son Seth is 22 years old. He has climbed mountains, Everest even, to stay alive. He has Mitochondrial myopathy, so endures more pain in a day than a soldier. But he does not complain.

His social problems, or his problems in relating to society, hinge on the fact that hardly anyone 'speaks' his language. His language is Makaton.

To most this is foreign at best, or dismissed by the unknowing, or a butt of jokes at its worst. We have to deal with the indifference and unkindness of others on a daily basis. Really it is a lack of imagination, so I feel no sorrow in my beautiful son's lack of interaction with a person with no imagination or empathy. It is their loss.

Seth and a young woman sitting on a swing signing togetherThere are a growing number of children leaving school with a communication system that their communities do not understand. So, they are dismissed, their thoughts and dreams and even basic requests for water are dismissed.

The Ed Evans Foundation and the Llantwit and Cowbridge Lions gave funds for an iPad and apps, including MyChoicePad, last year, and this has opened up Seth's life to more people. Makaton could be taught to all carers and teachers and professionals and friends. But it is not.

Seth was only diagnosed as being deaf at nine years, by then, it was too late. He was sad and introverted. He would never have been diagnosed at all if this small mother hadn't pushed for the brain stem test.

Sounds pass my son by on a wave like the grumblings of the stones on a sea shore. The swish and swash of a never ending growl. Coming nearer then receding. Swish. Swash.

Some sounds he hears, but not the upper levels of language. So blends are lost. Bed and Bread can only be separated by sign. He has given up on verbal language, but communicates well with those who have Makaton. And those few see how intelligent my most beautiful son is.

Seth using MyChoicePadYou think my son, because he cannot speak, is lacking in intelligence. I know you are wrong. I know his life and I know what he can do. It is not that his brain doesn't work. It is that you do not speak his language.

Take a leap of imagination. Place yourself in the position of my beloved son. Walk in his place and talk in his place.

This is one of the things I require of carers. Try to imagine being him. Learn his language and communicate, or you are of no use to us.

At home

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