Every so often I look at my children and I wonder at how much they’ve grown. It doesn’t seem five minutes since Sam was smaller than a Baby Annabel, as long as my forearm and lighter than half of one of my legs, and now, here he is, nothing fitting, his voice sliding downwards, losing the little boy highness I never realised he had. I don’t think about it much, this slow growth towards adulthood, after all it has taken Sam thirteen long years to get to the top of my shoulder, but every so often you come across something that throws it in your face.
Yesterday, it was the unexpected discovery of a pile of old exercise books. Now, don’t get me wrong, I throw away as much as I can possibly get away with when the children bring their old school books home at the end of July, but every so often I keep one or two, not out of a sense of nostalgia but for the simple reason that they had only just started them and there was a load of unused pages, and, you never know, they might come in useful one day. It’s a teacher thing.
I was actually looking for something else at the time (this is a not unusual phenomenon), and, equally un-unexpectedly, I couldn’t help having a quick peep inside. There they were, little scrawly drawings that L did when she was at nursery. A set of pictures with some sentences, from the first day of a holiday where I had caught the deranged idea that making them sit down and write about their day was a Good Thing That Good Parents Do. And, tucked away at the front, before the funny little drawings of water slides was a whole load of different writing, school writing. By Sam.
Now, I want to tell you something quite simple about Down’s Syndrome. It is a learning difficulty. It may seem obvious to you, dear reader, but looking through those books, full of writing he hadn’t done, ideas he didn’t have, and yet attributed to him as if he had progressed through the levels just like everyone else has persuaded me that people like me might perhaps have to work a little bit harder at getting the idea across to members of my profession, and society generally.
You see, this big little fact doesn’t mean that people who carry the condition can’t learn things. Quite the contrary, no, it means that they find things difficult to learn. And the things that are difficult are pretty much everything. I waited longer for his first smile. He didn’t crawl until he was 17 months old. Walking was even later, and running and jumping are still ungainly, difficult. Seemingly simple things like holding a pencil and making meaningful marks with it took an age to get to grips with.
And here is another nettle that you really need to grasp if you are going to have anything to do with teaching someone with Down’s Syndrome, be they a family member or in your class: these difficult things, these things that present herculean challenges to those with learning difficulties also take longer to get the hang of once you’ve got the beginnings of the idea. It was more than three years before he fed himself with overcooked pasta, and I sent him to school with a sandwich (cheese and tomato) for the first time only this year.
Let me give you an example from my learning life, just to illustrate a point, like. When I was eighteen I took my Grade 7 Piano examination. It was hard. I practiced for an hour a day, sometimes more, for months. I sweated over the pieces and scales and arpeggios again and again and again, until my fingers ached and I had to soak them in warm water. I had hour long lessons every other week and learned the theory, deconstructed the tricky bits, analysed the fingering, figured out, together with my teacher, how to move them most efficiently over the keys, not letting the timing slide, not playing too loud here, too soft there. And you know what? After all that practice, the tired hands, the frustration and the dedication, I failed. I failed the bloody thing. By a matter of a few marks, I stuffed it up. It was difficult to do and I wasn’t quite ready.
It is a matter of great parental pride to me that Sam will now write independently. I find shopping lists all over notebooks (usually spaghetti hoops and cars and caravans) and my heart melts because I remember that well intentioned, swiftly abandoned holiday project where he sat, wriggling and cross, weakly grasping a pencil, saying, ‘I can’t’. Little fingers with low muscle tone and low sensitivity to things you touch don’t like writing or drawing; weak shoulders and arms and cores don’t support those fingers well, and that’s before you get to the point where you actually have something to write about because you have understood what is going on around you.
And I remember how cross I felt at the time at the reams of fake writing, some of which still exists in those long unused exercise books and how it contrasted to what he could actually do when he was with me, sharing my attention with his little brother and sister, no personal person to hold their hand over his, to prop him up. Not unlike the way I felt about the carefully coloured Christmas card I could never quite convince myself he had done, and never quite made it all the way to the mantel shelf.
It makes me rage, deep within, that he was forced through a rigid system that purports to be inclusive, yet fails to empower the very people who are supposed to make it work, the teachers, with the knowledge and expertise they need to ensure that a child makes progress in their learning, and does it, no matter how slowly, no matter how long they appear to be ‘stuck’ at the same point, consolidating, on their own, by their own efforts. Sometimes you get a child who doesn’t fit the mould, who sticks a spanner in the system, and what do we do about that? Let’s be honest about our answers.
I am glad that the new SEN Code of Practice means that he’ll be in the system until he is 25, because it gives him a chance to catch up on those lost years when the system was stacked against him. Sam didn’t need to be copying out information he didn’t understand to go with drawings he hadn’t done in order to satisfy some target that didn’t relate to where he was in terms of his learning, small steps or not, marked in words he couldn’t read in a language he couldn’t understand.
I’m glad he’s in a school where the curriculum can be tailored around his needs. I’m glad that, in a system where you only get one shot at an education, all is not lost.