Sam didn’t get the message that he has Down’s syndrome. Was that something I used to say? Was that something I used to think, used to say, when he was little, and I was still making sense of learning disability in the family? Is it something I would still think, still say? If I say it, does it mean that I don’t accept my child, just as he is? That I am, somehow, defensive? And more, should I feel bad about that?
Well, yes. And no.
It’s not something that I would ever say now, not now that Sam is fifteen and I’m a long way down the parenting road from the days when milestones mattered, when, when we sat in our groups in church halls and community centres, when we drank gallons of tea and coffee in each other’s houses, we discussed the minutiae of growth charts and feeding and nappies and developmental steps, each, in our own way obsessing over our offspring and seeking reassurance and validation from our peers that we were, in fact, despite our floundering, doing OK.
Now, now that the gap has widened between Sam and his typically developing peers, his typically developing siblings, and I’m a long long way from the reading book competition, or the setting competition, the sports’ day competition, the Level competition or all the other competitions we indulge in when we discuss our children, there is no doubt that he has Down’s syndrome. You can see it in his face, in his body language, his stature. You can hear it in his voice.
But when he was little, when I might have said those words, or heard those words, what did they mean? Did saying it, or thinking it, somehow mean that I am making out that my child with Down’s syndrome is better than someone else’s? That because my child can do something or other, all the other kids are somehow rubbish?
It meant that I didn’t know, when he was a baby, what Down’s Syndrome was. It meant that my internal expectation, like that of many (most?) people who don’t know anything about learning disability until it rocks up in their family, was wildly out of kilter with the babe I held in my arms.
It meant that I was proud of him. That here he was, the baby that caused the long faces and the soft sighs, the reason I was hidden away in a private room, the recipient of concerned glances, of well meaning, but crushing comments, defied the expectations of those who would have thought I’d be sad.
It meant that here before me, and here besides me, is a real person. Not a stereotype, not some shuffling, shambling monster, of whom I should be afraid, but a living, breathing, complicated, complex person. It meant that, although he had a diagnosis, and one which society seems to disapprove of, I had, somehow, got beyond it. It no longer mattered.
What I was probably saying, while I stamped my angry way around my small town, shoving my pushchair in front of me and learning how to get through heavy shop doors without causing myself, or my baby, serious injury, was that other people’s judgements didn’t matter. That I was determined that they didn’t, and that they don’t matter to me. And that they didn’t matter to my son, because he, no matter what his talents, or his difficulties were, and are, is doing just fine. Just as he is.
That memo, the one that told me not to believe in my child, the one that told me that I shouldn’t hope for the future or take joy in today, was never meant for him. It was meant for me. And I never took any notice of it. I threw it away.