Inspirations can come out of nowhere sometimes. And this was one of those times.
There she was blow-drying her hair last night, like she does every night after a bath, when my wife suddenly had an inspired thought. She decided to stim (gesticulate randomly) in between blow-drying her hair. At various moments she would suddenly stop, brush her ears repeatedly, flap her arms wildly or slap her thighs loudly, then resume blow-drying her hair. These were a few of the ‘odd’ behaviours Caleb exhibits in front of us almost daily.
All this was done in full view of Caleb, who was reading at his favourite spot in the house (his parents’ bed), as he always does every Friday and Saturday night.
Eventually our little friend looked up and started taking notice, his face growing increasingly panicky at what he saw! He began to blurt out a succession of questions, each uttered with more alarm than the last: “Mommy, what are you doing? Mommy, can you don’t copy me? Mommy, can you don’t be like Xuan Ler (his classmate)? Mommy, can you be ‘normal’?”
And there it was. The word of the day: Normal.
So what exactly is normal my wife asked him, the point she was subtly trying to bring across to our dear son. In response, he immediately sat up straight on the bed, crossed his legs and kept perfectly still!
And there it was. The response of the day: Normal.
It seemed our precious little gift knew what ‘normal’, or (more accurately) what wasn’t normal, looked like.
Now according to the Oxford dictionary, the word ‘normal’ means “conforming to a standard; usual, typical or expected.”
Which begs the question: “What is the ‘standard’, the ‘usual’, the ‘typical’, the ‘expected’?” If all that is what it means to be human, then there really isn’t any one ‘standard’, one ‘usual’, one ‘typical’, one ‘expected’ now is there? I mean, just look at the variety of people and behaviours in this crowded world we live in!
Or is ‘normal’, as Caleb offered in reply to his mommy, sitting up straight, crossing one’s legs and keeping still?
Let’s first be clear. Caleb IS human. Very much so.
He breathes in and out through his nose, just like the rest of us. He has all the visible physical features of a human, just like the rest of us. He smiles, laughs, cries, frowns, sneezes, coughs, pees, falls, sleeps just like the rest of us.
So he’s normal, isn’t he?
Which means that if he’s stimming, spinning, flapping, echoing unintelligibly or monologuing incessantly as he pretends to be the Google Map voiceover, he’s also just being ‘normal’, albeit his version of standard/usual/typical/expected ‘normal’, right?
And yet, each time he does any of these, we his parents and caregivers, as well as others who know him, forget that Caleb’s just being ‘normal’, being the unique human God made him out to be. Instead we invariably ask him with increasingly worried tones: “Caleb, what are you doing? Caleb, can you don’t do that? Caleb, can you don’t be like Xuan Ler? Caleb, can you be normal?”
It’s ironic that while Caleb clearly knows what aren’t considered ‘normal’ for us, we don’t seem to know what are considered ‘normal’ for him!
Last night, I think my wife was inspired to try a little reverse psychology; to see how Caleb would react when he sees behaviour he exhibits showing up in the neuro-typical people around him as well. Especially people who know him intimately.
No doubt his mommy wanted to make the point to Caleb that how he behaves often makes us uneasy, uncomfortable. And by extension, the rest of the neuro-typical world uneasy, uncomfortable.
For me though, I couldn’t help but see just how far we still need to go to understand the world Caleb (and others like him) inhabit. A world where behaviours like stimming, spinning, flapping, monologuing, etc are deemed ‘normal’. A world where expressing oneself in such ways, in the absence of understanding conventional ‘normal’ behaviours to express oneself that are acceptable to society, shouldn’t be disparaged or discriminated against.
So can we as a society accept these ‘normal’ behaviours from people like Caleb? More importantly, can I as his caregiver and closest kin?
Or do I draw the proverbial line in the sand, and say to Caleb and his friends that if you behave the way you do, you stay on that side of the line? And if you want to come to this side of the line, then you have to behave the way I do? The way the rest of society does?
If so, then how does that help inclusion and integration? If a child’s or adult’s disability causes him/her to stim or shout in public involuntarily every now and then (like for eg those with Tourette Syndrome), do we draw the line right away to keep their ‘normal’ from ours?
Someone once said that if we want our special needs children to ”enter our ‘normal’ world”, we must first “enter their ‘normal’ world”, then gently lead them safely over to ours.
Was that what my wife did last night? Or has that episode merely reaffirm in Caleb the harsh societal reality that he must leave his world completely in order to be allowed into ours? That his ‘normal’ must surrender to ours because ours is the true ‘normal’?
Have we caused him more harm than good?