The personal story in the Guardian ("I half hoped that I might miscarry") of the Mum of a baby boy with Down's Syndrome, well illustrates the first trauma and guilt, followed by the later emotional contortions that some parents go through in having and loving a child with a disability. I say "some" quite deliberately, partly to leave the number unquantified and partly so that should your experience as a parent be different, well, that's OK, too.
A number of thoughts struck me. For instance, whilst obviously this is a mother's account of her own emotional journey, the father's emotional journey is almost entirely absent. "He" or "we" in this account are almost entirely extensions of "I". Most remarkable is the passage, "I told my husband that I wanted Paddy adopted and that we'd have to go and live in New Zealand so that no one would know and condemn us. He agreed as he endlessly stroked my hair and told me all would be well." Do not misunderstand me. I do not criticise Mum here at all. Partners give such emotional supports to each other. But over the years, often enough, and again on reading this, I have thought that Dads have feelings too and, too often, Dads feelings are neglected in such institutional supports as are available (the clinics, the professionals making home visits, the letters addressed only to Mum). I have wondered if there should be some formal, local level, system offering supports to Dads?
Another thought that struck me was the emotional similarity to that piece I first read many years ago, "Welcome to Holland", by Emily Perl Kingsley, the Sesame Street writer, who had a son with Down's Syndrome. My point is the emotional contortion, almost the necessity of the contortion, that can set apart the experience of parenting for the parent of a child with a disability from that of other parents.
But my main thought, as a parent, a Dad, for now 25 years, of daughter "I love to bits", just as I love all my children and grandchildren, is that, for some (perhaps for many or even for most parents with a disabled child), it doesn't get any better. Indeed, when our children reach school leaving age, adult services are even worse. How can it be otherwise when, for instance, the Government doesn't even know how many adults with learning disabilities there are who need adult services, be they for health or for independent living or whatever, that most people take for granted?
Annie Rey, the mother and writer of the Guardian story ends with a sentiment we can all share: "I truly believe that if my precious boy did not exist, our world, and probably the world at large, would be a poorer place." What bothers me most, always has done, and probably always will, is what will happen to my daughter when her mother and I can no longer fight her corner? What happens to her when we "drop off the tree"?
It's a long leap of reasoning from this point in this blog posting across the gap of years back to the point why Paces and then Paces Campus were set up. Nevertheless, it is a direct leap. It was to put parents at the heart of public services; to be an exemplar of transformation in those same public services; in our case, of the benefits of conductive education. As I write this, I am asking myself - I will ask our Trustees - Have we ourselves still not done enough to put parents at the heart of what Paces does?