by Karina Mcdonald
My son Jake is 6 years old, non-verbal and non mobile. But his ‘communication’ has exploded lately.
It is very easy to tell now whether he wants a drink or more food, for example.
A dissatisfied grunt and turning his head away from the offerings. A furrowed brow and a glaring look at the disdain and the undesirable object. That’s the quickest way he now tells me what he wants. Or doesn’t want.
At dinner tonight he grunted and turned away from the drink AND the dinner. I wasn’t sure what he wanted. He continued to furrow his brow and stare intently, so I followed his gaze and realised he wanted MY dinner. Not his!!!
I said, without thinking, “Sorry Jakey, this is tough for you to chew at the moment, you have to have your dinner.” Jake’s dinner was puree while mine was a roast pork feast.
And then I heard a snuffle and a sob and I looked over at Jake’s 8-year-old sister Sienna. Her eyes were full of tears and her lip was trembling. Her face crumbled, and she burst out,” I wish Jakey could eat what we’re eating! I wish he could eat what he wanted to eat”.
Then she shocked me by asking, “What if he’s like that man who drives the trucks in that video you showed me?”
And I realised she’d been talking about a news story I’d shown her of a man with cerebral palsy who drives trucks MONTHS ago. I mean, maybe even a year ago.
I asked her “What would it mean if he was like that man”
And she cries, “It means he would talk different to other people, walk different to other people and I don’t want him being made fun of.”
My heart stopped, my throat tightened and my tummy flip-flopped.
“Sienna, he probably will be like that man… And that is what some people perceive as ‘different.’ And some people don’t understand ‘different’. Sometimes they can be afraid or uncomfortable with differences. So they make fun of it instead.”
She cried some more and said, “I wish I could be like Jake so he doesn’t feel different alone,”
And that’s about the part where my heart cracked open. Kids. They hit all the spots, don’t they?
I thought for a long moment. How in the heck do I tackle this? When as an adult it’s hard enough navigating these choppy waters of acceptance, inclusion, guilt, fear and sadness. How, when as a special needs parent we grapple with the discomfort of ‘what is’ daily, to now be a source of wisdom and comfort for others, least of all siblings.
Then I replied, “Instead of feeling sorry for Jake, feel sorry for the person teasing him. By not understanding differences, by being scared and teasing instead of trying to understand, THEY miss out.
“They miss out on hearing Jake’s magical laugh. Of feeling his soft hand reach out to touch their face. Of looking into his almost black eyes that are so gentle and sparkly. They miss out on his cheeky humour and his determination and love of fun.”
“They miss out on witnessing a determined, powerful kid who won’t stop until he’s picked up that toy, or reached for that flower, or struggled to turn that page, no matter how difficult it was to coordinate. They miss out on seeing him communicate with his peers, without being able to talk. They miss out on watching him squeal when his favourite people visit or his favourite song comes on the radio.”
“So don’t feel sorry for Jake, Sienna. Feel sorry for those who are afraid of difference. Their world must be a boring, predictable, unchallenging, void of magic, place. Feel sorry for them.”
Smiles for Jake is a page about how this 6-year-old handles Quadriplegic Cerebral Palsy, Polymicrogyria, Epilepsy, Cortical Displaysia and a myriad of other diagnoses, like a BOSS. And with a 1000 watt smile. The page is about awareness, advocacy, education and insight into our days. Follow our journey at https://www.facebook.com/SmilesForJake and https://www.instagram.com/smilesforjake/