The day I was 18 it was overcast. I’d like to say I remembered the day vividly, but I don’t. Snatches jump into my memory; cards and presents at the start of English, my tutor, Roger, smiling and rolling his eyes, a pizza lunch with my mum and my friend Liz. Alcohol was probably involved somewhere, but I really don’t recall. Right before my A levels, I was in a frenzy of excitement and anticipation. This week, my firstborn, my S, was 18 too. Equally frenzied, like me, he went out with friends, not interested in staying home.
I feel chuffed when I look at the young man he is become. When he was that tiny baby and we were so worried the fact that he would one day be 18 was inconceivable. Toddler, small boy, stroppy teen, stages he has passed through (OK, so he might still be in the stroppy teen phase), the inevitable passing of time, the fascinating transformation through the ages – none of them have prepared me for my amazement at this birthday. It feels strange to have an adult child.
It hasn’t been easy, getting him to this point, and neither do I think my job is over. (I am currently huffing and puffing at the idea that I will have to apply to the courts for permission to assist my own child, but that is a story for another day.) There is plenty to be getting on with, but in some ways I think I can cautiously congratulate myself on a job well done.
This is not to say that it has been easy. Much of parenting, and you can multiply this for any sort of disability parenting I reckon, is hard work, from the almost mindless drudgery of wiping noses and arses to the withstanding of tears at bedtime and the constant turning things off. The ‘no’ word can become the hardest word, and sometimes it feels as if you, the parent, the adult, must have nerves of steel and a heart of stone.
To be honest, the disability thing doesn’t help. As a little one, S was the supreme example of cuddliness. His low muscle tone and a winning personality made him irresistible to many. His eyelashes have never had a problem working, and neither has his smile. Small in stature, especially when he was young, it was easy to kid yourself that, somehow, he would defy time and stay a child forever.
Like motherhood, there is an aspect of disability that is played out in public and Other People, every one of them with a different understanding of your child and most of them with the best of intentions, get involved (lots of them professionally). If you’re not careful, before you know where you are, your hard work is undermined by an ugly combination of opinion and pity.
But here’s the thing. Heartstrings are all very well but in the end there is a job to be done. In the end there is a challenge to be laid down and lived up to. That tiny baby, that little boy, he didn’t stay that way. He grew and grew and I am grateful for all the adults who did not give in, for all the grown ups who gently but firmly said, ‘no’ and, ‘hands to yourself’ and, when he said, ‘I can’t’ replied, ‘you can.’