I’m keen that this isn’t my blog, but one where parents feel they can share their experiences and concerns. So I’m delighted that Nancy Gedge contributed this for the second post. Thanks so much Nancy.
It’s always someone else…
Now that my eldest child is 15 and nearing the end of his school days, I don’t find myself thinking about his babyhood very often. It’s strange, but somehow the teenager I see before me, the one who is always hungry and hates his spots seems to bear no relation to the babe I held in my arms, the firstborn I waited for all those years ago. Together we have travelled a road through time that has not only changed him, but me. As well as asking myself where he went, I find myself wondering what happened to her too.
That woman, the one who excitedly bought teeny-weeny baby socks (you know, the ones that you really buy for yourself because there is no way that you can ever get the damn things to stay on a teeny-weeny baby foot), read her baby book from cover to cover (subconsciously taking in all those lovely, fluffy photos of babies who never cry – except in an attractive way – and who never poop all the way down their legs and half way up their backs) seems like an alien creature.
You see, there’s this thing about having babies of your own, you know, the sort of real ones who keep you up til all hours wailing and generally having tummy aches or other mysterious ailments, that does a very fine job of bringing any rose-coloured preconceptions you might have had about the state of early parenthood crashing to the floor and splintering them into a thousand million little rose-coloured shards. And, as they grow, the destruction of your preconceptions continues.
The chance to go to the toilet on your own? Ha. Siblings playing happily and sharing toys nicely? Ho ho ho. A full night’s sleep? Yeah, right.
Mind you, it has to be said that the vast majority of my expectations disappeared about three days after my firstborn arrived. It’s not a very nice experience, I can tell you. There you are, recovering, and in come a load of doctors and nurses with long, long faces and clipboards with blood test results and there it is. Everything you thought you were expecting isn’t. That moment when you are told that your child doesn’t measure up to the perfect-ometer is a bit of a shocker.
The thing is, I suppose, that we all have expectations of our children. I certainly did before Down’s syndrome came along and knocked them all flying like skittles. We think, when we hold that baby in our arms that they will be the brightest and the best; they will be the next Formula 1 champion, or football star, or whatever it was we wished we had turned out to be. Being told that this will not happen, and instead they will face a future of hard graft, just to get the smallest amount of mastery over the basics, is a hard egg to swallow.
So why am I telling you this? Why am I, a primary school teacher, and ordinary working mum-of-three sharing the destruction of my hopes and dreams in such a way? Because, aside from the fact that March is all about Down’s syndrome awareness for me, I am worried.
You see, being told that your child doesn’t measure up, that they fall short of national expectations isn’t very nice. In a funny kind of way, I am thankful that we received our son’s diagnosis when he was a tiny baby, because by the time he was eleven or twelve years old, those feelings of failure, or grief and disappointment, had faded well into the background. He has never had to deal with them. But now, things are different, and not just for us, the one in however many infinitesimally small number that we were.
Because our children, even if they don’t have a learning difficulty, if they don’t get to the expected standard in Year 6, they’ll have to do all that hard graft, that learning of grammar and spelling and maths all over again in Year 7. On the face of it we might raise our eyebrows in smug self-satisfaction, look at our charming offspring, so lively, so talented, and wonder what all the fuss is about. Of course they ought to reach the expected standard. It’s expected, after all. What a silly little thing to get our knickers in a twist about.
Only the thing is, I look at my daughter. She is ten years old, and bright as a button. She is smiley and giggly, she runs around and gets tangled hair and dirty knees. She has just discovered that she can read an entire novel and enjoy it and she gets cross with maths. She is everything, in fact, that a ten year old should be. Except, according to curriculum measurements, she isn’t. Since the introduction of a new standard, she is below national expectations, and, just at the point when she should be facing secondary school with that butterfly feeling (there are Bunsen burners and art rooms that smell of mysterious concoctions, music rooms and a drama studio, a gym with ropes that go all the way up to the ceiling and a big grand piano tucked away in the corner), she will open her school report and understand that she falls short.
Will all those wonderful things be hers? The art, the cooking, the science and history? Will she have access to a broad and balanced joyful education suitable for the young person she is? Or will she have the constant dry diet of narrowness that she is already experiencing in order to justify her teacher’s continuance on the pay scale? Will she be paying the price of far off decisions made in far off Westminster?
When I write or talk about Down’s syndrome there is always the caveat that these things don’t happen to very many people (as if that somehow makes them less awful). That this knowledge of not measuring up to someone else’s scale affected us, but not so much him. But this. This one affects us all.