There are three little red books sitting in a row in a cubby hole in my desk. At one point they took up far more of my attention than was probably healthy, and now they sit, gathering dust, rarely seen and rarely remembered. Inside, they contain all sorts of useful information pertaining to the health of infants, including records of health visitor visits, immunisations and growth charts. When you are at home with baby you can pore over them and obsess to your heart’s content.
They aren’t all the same, though, and I freely admit that I had a problem with it at the time, and to a certain extent, I still do. Inside Sam’s book there is a plastic packet containing the growth charts for Down’s syndrome. At the time, I wasn’t ready to accept that he should be measured by a different yardstick. At the time, as now, I couldn’t accept that different yardstick as symboliaing a different standard, of expectation or of care.
And, after going on seventeen years of tangling with doctors and nurses of his behalf, I know that I am right to be cautious. Too many people seem to accept a lower standard of health and a higher threshold for pain for him for me to be entirely trusting of the protocols. When a young person (or an old person, come to that) cannot advocate for themselves, be that because they are too young, or because they have some form of learning disability or difficulties in communication, you, as their parent or carer, have to learn to step in and make sure that things happen – sadly things like food and drink and getting the right medicine at the right time (and I’m not talking about the NHS in recent years, either).
But, and here’s the thing, he is different. His physiology is expressed in a different way to the typical population, and, along with that, comes an understanding that in all sorts of ways he needs something different. At first I understood it in the acceptance that, as his mother, I was allowed – and I was – to be more anxious than the average parent. As he has grown, I see that he needs different, earlier, bed times at home, different, adapted texts at school.
In many ways, that growth chart represents both the blessing and the curse that is a diagnosis of Down’s syndrome. While perhaps not so obvious to the untrained eye when he was tiny, it is there, now, for all to see. Unless you are asking for help from someone official, like a government or local authority department or something, people can see, they can hear that he is different, and that adjustments will need to be made for him wherever he goes. If only it didn’t mean that, at the same time, people who had less of an understanding, if not of Down’s syndrome, but of him as an individual, that expectations would be simultaneously lowered. The application of a medical diagnosis to a social context isn’t always helpful.
I’ve never taught anyone with Down’s syndrome (if you don’t count Sam). The children who have been through my classes have been the kinds with an invisible disability, like Autism, ADHD or dyslexia – and the vast majority of them haven’t had a diagnosis at all. And, as their teacher, I have made all sorts of adjustments in order to make my classroom the kind of place where they can learn, from special places to sit to requiring the rest of the class (and myself) to change our behaviour or printing out the words in a larger format.
Which is why I am confused by the assertion that it is only those children who have a legally protected characteristic who I must make adjustments for. If you want learning to happen in your room (or your corridor) then adjust you will, in a hundred million little ways, from creating a calm and purposeful atmosphere of mutual respect (and no, children don’t mind when they are asked to stop teasing/winding up certain individuals, in fact, quite the opposite, and no, they don’t mind when some children need more stickers than they do, again, quite the opposite, unless we bang on about it not being fair and make out that it is the stickers or the ‘special treatment’ that is the important thing, rather than the learning) to adapting materials and resources so that they can be universally accessed, or finding a different way for a child to show me what it is they really know rather than tying themselves in knots over spelling in a science lesson. To suggest otherwise is to perpetuate the myth that teaching is (or should be) easy, and that special educational needs isn’t complicated.
And no, I don’t see that as a lowering of standards. What it is, is an understanding that an education is a process and that you will never, especially in a child, be presented with the finished article. Because, in the end, learning is fundamentally unlike that one dimensional, linear, medical growth chart.
I’m trying desperately to keep on saying the same thing, but in a different way so you don’t get bored.