I’m not the biggest fan of labels. Not that sort that tell me how many calories there are in that chocolate bar, or the one that tells me when to throw out the yoghurt that’s been lurking at the back of the fridge, or the type that tell me what kind of place I have arrived in when I am on my travels. I’m talking about the labels we give to children, the labels that lock them in to low expectations and underachievement. I was very interested to read this , because so much of it chimed with what I have discovered on my little adventure with Sam.
Obviously, without the label, ‘Down’s Syndrome’, many essential services would have passed us by. No-one would be checking as a matter of protocol that his eyesight is doing what it ought. No-one would be keeping tabs on his hearing. There wouldn’t be anyone, other than me, regularly measuring his height and weight, no blood tests screening potential problems with his thyroid. I wouldn’t have been introduced to a whole community of professionals who made such a profound difference to his early life. Without it, we may well have had to fight for the support that Sam needed if he was going to be able to cope in a mainstream school.
As a new mum, I dutifully went along to therapeutic playgroups where I met physiotherapists, who taught me how to teach him to sit, roll over, crawl and eventually walk. I met play specialists who taught me new songs to sing, and reminded me of old ones, who showed me toys designed to stimulate the skills I was trying to teach. And I met a wonderful lady called a Portage Worker, who helped me to bring therapy into everything that Sam and I did at home, to make ‘learning how to take his first steps towards independent living’ a way of life.
One of the most important things that these ladies did for me was to support me in my view that my son was more than a label, that he was an individual, someone who was journeying into the unknown future just as much as anyone else. When someone made a remark, no matter how well intentioned, like ‘all Down’s children have speech difficulties’, they took my umbrage for me, and helped me to rephrase the comment into something that went along the lines of ‘many people with Down’s syndrome have difficulty in acquiring spoken language, so it’s a good idea to make a start with Makaton signing. They laughed with me over comments like ‘Down’s kids don’t get nits’. They felt the same outrage I did when to have an extra chromosome was referred to as akin to a ‘breed’. It became normal for me to look beyond the label, to see the little boy for the individual he is, and I, perhaps naively, assumed that everyone else who ever worked with Sam would feel the same.
By the time he was ready to start school, I was pretty confident that I had done my best to make Sam as ready as he could be for his entry into mainstream education. He knew his colours, could count to ten, knew which way round a book went and how to turn pages, make purposeful marks on a piece of paper, all that sort of thing. Yes, I knew that his development was significantly delayed, and yes, I still had yet to hear him call me ‘mummy’ but, I felt, we were well on the way. The foundations were laid.
We had, we felt, chosen a lovely school with care. The head teacher had impressed me with his calm acknowledgement that the school was there to serve the local community – whatever their needs, and Sam was, finally, entering a world I thought knew well. I wasn’t baffled by the jargon, or intimidated by busy professionals. I knew these people. These educators. I knew that the needs of the child was at the heart of everything that they do. I was one of them.
What I failed to appreciate was that the professionals to whom I was handing over my precious cargo were just as susceptible to labels as anyone else. In fact, in the five years I had been at home with baby, years which encompassed the introduction of a new SEN Code of Practice (that’s the way that Special Educational Needs are dealt with in schools, for the un-initiated), there was a veritable explosion of labelling children, many of which carry negative, and to my mind, often barrier-forming connotations.
The first inkling I had that all was not as I thought was when I watched the TA (that’s the teaching assistant) who worked with him playing ball in the playground. I watched, confused, as she played with him, and him only, fetching and carrying a ball I knew Sam was only too capable of fetching himself, having spent what felt like hours in our garden, gently throwing balls into his eagerly welcoming arms. When I heard that he had fallen asleep on her lap one story time I wondered why he wasn’t sitting on the floor listening with everyone else.
After almost a year in Reception class I began to wonder why Sam wasn’t bringing a reading book home, like all the others. I had spent the best part of two years travelling to Bristol to weekly speech therapy sessions with the Down’s Education Trust. He and I had learned the first lot of sounds; we knew the pictures, we knew the letters, we knew the actions. I wondered, in the later years, if the struggle I had to get him to dress himself in the mornings, to put on his own shoes, hang up a coat or carry his own bag was hampered, in part, by his having a personal assistant on hand at all times of the school day.
It occurred to me that the negative connotations of ‘Down’s Syndrome’ may be holding him back. Because, despite my not knowing anyone else with the condition, it turns out that there are an awful lot of people out there who do, and sometimes, just because we know one person with a particular label, we jump to the conclusion that therefore we know lots and lots about everyone else who appears, by their label, to be the same. We don’t.
- Helping kids with Down’s syndrome to communicate (scotsman.com)
- Why I write my Down’s dad blog (bbc.co.uk)