I’m writing this for the lady in Tesco’s today. This is what I wish I had said as I’m never very good at saying it at the time; I’m guessing you’ve never come across a child with a brain injury before? Because if you had any understanding of the kind of behaviours that can result from such an invisible injury, I doubt that you would have been so shocked and offended by my son. His behaviours are what you might call ‘unexpected’ so your reaction is something we regularly encounter. But recently, my DS is becoming more aware that he is being watched and judged negatively. He just doesn’t understand why.
I wouldn’t ordinarily take him into a busy supermarket. In fact I go out of my way to avoid such situations by getting groceries delivered and making sure we never run out of essentials. Why? Because shopping is just not easy for my son. The glaring fluorescent lights, noises incoming from all directions, beeping checkouts, booming tannoy announcements, crying babies, people down every isle to literally bump into and the queues that are just not possible for him.
As soon as we enter the store, he bolts. He’s running straight up the fruit and veg isle, taking little notice of the people he is barging past, he’s beating his chest with his clenched fists and making a ‘rargh rargh rargh’ sound. All of the shoppers are stopping to stare. First at him, then back at me, perhaps wondering why I am not ‘reining him in’?
I chase after him and try to physically steer him to the pharmacy counter. It’s the only reason we are here, I need to collect this damn prescription – it’s an essential I haven’t been able to pre-plan for and we’ve got to do this. People are still staring as now I am half steering half pushing him in the direction of the pharmacy.
When we get to the counter, there’s a queue. My eyes instantly well up. We can’t queue! ‘Don’t cry don’t cry, you can do this’. There’s a shelf of Easter eggs nearby, I take him there and point at the colourful tempting array of shiny eggs. It’s enough to engage his attention and he doesn’t bolt. He grabs 2 Easter eggs, Peppa Pig ones and brings them back to our place in the queue. He spins around and around on the spot with the eggs, banging them together and repeating ‘stinky peppa pig’ over and over. He runs to and fro between the shelf of Easter eggs and me in the queue as I try to take the eggs from him. Suddenly he notices that you, the woman behind us in the queue, are staring at him, mouth agape.
He approaches you, gets very close to your face, just to check. Then he asks ‘why are you looking at me?’ I hear you gasp in horror at the insult you feel. You’re muttering to your companion ‘OMG how dare he, blah blah’.
I can feel your eyes burning a hole in my back as you are demanding an apology, you want me to grovel.
What I should have told you was that he was not being rude. He really wanted to know why you were looking. Despite my very best efforts – with behaviour charts and flash cards and explanations and rewards, he doesn’t understand that his behaviour is unusual. Neither does he know how to be rude. He just wanted to know why you were looking. Did you want to engage with him? Did he know you?
What I wanted to ask you was this – would you stare agape at a child in a wheelchair? A child with a visible disability? Probably not I would hope, because that would be rude right? So, why do people feel it’s ok to stare at children with learning disabilities? I think my DS asked a fair question. Why were you looking at him? And I didn’t apologise or explain as I felt it was a matter between you and him. It is very obvious that he has a disability and we have as much right as everyone else to be out and about collecting a prescription.
And what you don’t know is that every time we leave the house to go out to a public place, I am filled with dread and anxiety about how people like you will react. And every time we get back home, I close the door, lean against it shutting the hostile world out and breathe a heavy sigh of relief vowing that we will never venture out again. But we do. And each time, we hope and pray for more acceptance, understanding, compassion and kindness from the world.