Once you’ve been on the ‘disabled child’ merry-go-round for a few years, you get to know what’s coming. There are trails of thought so familiar to every synapse within your skull they can work right through from beginning to end in an instant, depositing you firmly in the centre of the quicksand you've been struggling to escape for so long. No way for you to intervene, nothing you can do to alter your course, no bargain to be made.
Some of the things that used to hurt so much deep down within your chest are dulled over time, become part of your consciousness, instead of sharp pin~point pain re-discovered over and over again. The loss remains the same, but the emotional reaction to that loss lessens ~ like the soft warm soles of a baby's feet, enough friction over enough time hardens the skin, as their body builds its own layers of protection from the roughness of the road. When you spend enough time on your feet the nerves become desensitized ~ they have to, it's impossible to live on that tightrope for years at a time, balancing emotion and action, never taking a breath deep enough to tip you over. The gravel or paving or dirt is just as hard and unyielding and peppered with the jagged edges of anguish as it was when you took that very first step ~ it is you who has changed.
I remember pitying glances, and those comments people make from a place of good intentions – ‘I don’t know how you cope’ was a common one – funny, I didn’t realise I had a choice. If I refuse to cope, if I fall apart and cry for hours at the life my gorgeous son will never have, will that alter it? Will he suddenly be able to walk and talk, reason and decide, read and write? Will his blood and bones and chest and brain behave in the way they do for his two siblings? Will it all go away, will he become ‘normal’? I know that he won’t – I tried. And even now, every so often, more tears travel down over my cheeks, wetting my face, washing my skin clean, and I learn all over again that even if I could cry an ocean, it would do nothing.
So, what is considered coping? Every parent who says ‘I can’t do this, I need help’ - does this mean they are not coping? Are they ‘bad’ parents? Is it really that simple? Of course not. Do you ever sit there with the letter from the hospital, underlining the medical terminology to look up in your handy medical dictionary, because you don’t remember having seen that phrase before, and it sounds serious? Do you ever have a hurried conversation with a teacher or LSA, trying to let them know how the weekend was while they’re (understandably) distracted by what the students are up to? Do you troll the internet every so often, just to see if there’s any new info out there? Do you patiently sit there playing with shaving foam or sand or cold cooked pasta to try and help your child accept touching different textures without becoming distressed? So what if English is not your first language, and most of the words in the letter seem unfamiliar and worry-inducing? What if you can’t follow what the teacher says because you depending on lip-reading and they keep turning around to the children? What if you find reading challenging so skim-reading websites takes you hours? What if you have other children to care for and don’t have hours to sit and help one child focus?
Somewhat more controversially, do activities such as this serve to demonstrate that we do cope and are coping, or alternatively, are they the very means by which some of us cope? By focusing on some aspect of the life of our child where we can feel useful, does this empower us as parents, give us that opportunity to feel we're having an impact, that we're contributing in some way to the world our child inhabits? That stoic public face of coping, that need to be in control of something . . . anything . . . does that validate us in our role of expert parent? Does this help us feel that we are not on some kind of crazy journey down a rocky mountain, backwards and head first and upside down, never knowing where the next blow will come from, never really able to take a deep breath because we might end up with a mouthful of sand or dirt?