“I can’t cope with life, I’m too different”

At 8.58 am 4 June 2001, the staff at Gloucestershire Royal Hospital accident unit surrendered and pronounced my son dead. He was twenty two. He had been brought in by the police who had gone to pick him up after a householder had reported him behaving strangely. As the policemen approached him he stuffed the plastic bags he had retrieved from bins into his mouth and choked. Those bags contained dog excrement.

Revolting? Yes. To be condemned? No. Not if you knew the story behind what this young man did.

Robbie was born after a mismanaged labour. He was yanked into the world by misapplied forceps which damaged nerves linking his brain to his body. He could not suck, he could not swallow his own secretions. He was termed a “floppy baby” and after multiple tests was assumed to be brain damaged. We, his parents, were told it was unlikely that he would ever walk or talk. I did not believe them—his eyes told me otherwise. The medical profession talked tests, weights, and tube feeding. I talked love, touch, home. I discharged him without medical consent. I’d learnt how to tube feed him, aspirate him, do everything they did for him in the special needs unit. Robbie started to show signs of wanting to live. However, we had now lost the support we might have had, had we been in accord with the hospital. We were, in a real sense, alone. The stage was set for marital strain and individual misery. Well meaning health visitors trotted out advice suitable for healthy babies and were, it seemed, as ignorant as we were of the special problems.

Things improved. Robbie put on weight, and he learned to walk—albeit not until he was well over two—and went to the nursery of a special …