My son Robbie Gordon, who has died aged 37, due to uncontrolled seizure activity, had a unique personality, and distinctive strengths and abilities. Robbie had a very rare condition known as Dravet syndrome, with epilepsy, profound learning difficulties and autism. He experienced difficult times that would have floored many of us, but always came out smiling. His internal strength and robustness got him through the many tough days.
Robbie’s mother, Ruth (nee Melton), and I were both working in London, in a special school for children with severe learning disabilities, when Robbie, the elder of our two sons, was born. When he was two, we moved to Hastings, where our younger son, Greg, was born – he grew up with a sense of great love and protection for his brother. Robbie’s early years were incredibly difficult and Ruth gave up her career as a nursery nurse to care for him. There were no support groups that fitted Robbie, so Ruth and Robbie were always on the outside, and it was very isolating. Dravet syndrome was first recognised, by Dr Charlotte Dravet, only in 1998; Robbie had an ever rarer sub-group (of the SCN2A gene) and his diagnosis was not made until he was 30.
I had continued to work as a teacher, ending up as the head of a special school in Eastbourne that Robbie attended. Through my work, Ruth and I heard about Dr Dave Hewett and Intensive Interaction, the communication approach he had developed for parents and schools to use with profoundly disabled children, while also having fun. Intensive Interaction allowed Robbie to be Robbie, helping us to love and discover him, and allowing him to be relaxed and happy.
Robbie learned not just to accept our presence, but to be able to receive and show love to us. He was in an environment not where we were always dictating what he should do, but encouraging him instead to be who he wanted to be, to seek us out, and to enjoy with us the sensory things that were his interests, at his level. He liked rubbing his hands through the leaves on bushes; feeling the bark of trees; touching a flower and grass. He loved beads and tinsel, the shinier the better, and sparkly lights, so in our house it was Christmas every day.
Ruth and I wrote (under pseudonyms) a chapter in Interaction in Action (1998) about our early times with Robbie.
He could not communicate with us, but he could express in his face and his eyes quite complex emotions – expressions apparently beyond his cognitive abilities. He was inquisitive, playful, affectionate and so loving.
Robbie didn’t know how to carry a grudge, malice or jealousy – all he knew was how to give out affection and gentleness (not to say that he didn’t cause bumps and bruises as his ten stone landed when he threw himself onto you for a kiss, nose or forehead rub). In that respect, despite all his disabilities, Robbie was the perfect human being, with a pure soul, knowing only love and how to give it back.
He brought out what was best in people. In return we wanted to make him happier. Robbie went everywhere – his family never hid him away – and, despite his actions sometimes appearing puzzling to some of the public around him, all who worked with him were always so proud of him.
Robbie is missed by his many friends. He is survived by Ruth, Greg and me, and his niece, Elsie.
