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In my two articles last year I looked at the life and death of my 22-year-old disabled son Robbie and my grieving process. But what is it like to be the mother of a disabled child?

Bringing up any child is hard work but rearing a disabled child is infinitely more so. It challenged me at every level. My son was disabled by virtue of what had happened to him at birth. My life had been irrevocably changed and I had to adapt. I ached for the healthy child who might have been but wasn't.


It started from the moment I knew things were not "right" with Robbie. The anxiety was horrendous. Being first-time parents was perplexing enough but being plunged into a world of incubators, tube-feeding, tests, waiting for results was worse.

There was guilt, irrational though it may have been, that I had brought this trouble upon my own child. From the guilt stemmed faulty handling, a falling over backwards to "make it up" to my son who was struggling to relate to the world normally. There was the pain of witnessing his struggle, of seeing my child's progress fall further and further behind that of his contemporaries. The embarrassment of him dribbling profusely until he was six, seeing people recoil from his slimy state and his eyes showing their rejection. Even then, I found it difficult to cuddle him in that condition. I faced a terrible mixture of feelings; those of the fiery vixen fighting for her cub, warring with my own needs for relief from the task.

I called my love for Robbie "tortured" and it was. My commitment to him was immense. I would have done anything for him - and I did - but there was never the warm and easy flowing relationship that I knew later with my younger and healthy son. It was a perpetual battle against ill-health, co-ordination difficulties, antisocial behaviour and perpetual demand - the black hole of unanswerable need.


But there was also constant learning and the satisfaction and thrill of small progress. There was the challenge of finding help and seeing development, the accompanying of a strong spirit who saw life differently, who in turn gave me another outlook. He brought me into contact with people and places that I would not have encountered. He forced me to go deeper into my own resources, to explore emotional and spiritual truths. Robbie made me question what real love is - he showed me how conditional mine was. I saw him reach manhood, questioning, challenging the status quo, pushing people to their mental and emotional limits. I was proud of him and dismayed by him. It was too much in the end for him, he couldn't do it any more, he was tired. He had to go and I had to allow him to.

Then there was the missing him, the loss of that part of me which belonged to him and always would do, combined with the release from the worry, the strain and the hurting. Robbie was, and is, my teacher.

Judy Clinton's late son, Robbie, had cerebral palsy.