Celebrating my son on International Day of People with Disabilities

Those words roll off my tongue so easily these days but it took me years to get them past the lump that's been permanently lodged in my throat since his diagnosis.

I say it so easily now, but what does that actually mean?

Two words: "profoundly" and "disabled".

I suppose to most people, when I say these words they immediately understand that my son can't talk.

But what it also means is that he doesn't have the cognitive ability, or the brain power that it takes, to communicate with non-verbal language.

For example, he can't point to something he wants because he doesn't know how to compute the thought to the hand and form the gesture.

My son has no ability to communicate his inner needs to the outside world.

I challenge you to take a minute to really take that in. Imagine what that would be like.

To be an 11-year-old boy on the verge of puberty, with no means of communicating your most basic needs. That's so vulnerable.

And to be clear, he has wants and needs. They range from the most basic requirements, like food and water, to more individual wants and needs, like "don't touch my hair like that mum, I don't like it" or, "look at the way that exit sign shines mum, do you see that too?"

I have had the great privilege over 11 years of meeting my son and truly knowing him.

As his carer it's my job to know what he needs. And I take pride in fulfilling that duty.

Much of it is obvious. Clean nappy, food and drink, providing an environment in which he feels safe and is secure.

But then there are those needs that are less obvious.

Days spent looking to him for any point of reference to work out in a careful dance of deduction what it is that is fraying my boy's nerves in that isolated moment:

Is it his belly? Is it empty? Is it too full? Maybe he doesn't like the sausages cooked that way, so this time I'll try them like this instead.

Maybe it's his chair, is it too hard? Or is it too upright for him, does he prefer to lay down instead?

I know, it's the toy with lights that spin he's needing. Let me search through all the cupboards and find it. I hope that's the thing he needs.

I spend countless hours this way. In private dialogue with my child, playing detective to his needs that are changing every day.

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Sometimes I stop and we just sit together. Him laying on his bed, creeping closer to my arms second by second.

I don't react, because I don't want him to pull away. I so desperately want him to reach for me but I also don't want to smother him.

Finally he sits up and looks into my eyes. Those big brown pools that somewhere along the line, developed a language all of their own. They're locked on me and it's in that moment that Frankie talks.

"Thank you mum." I know that's what he's saying.

"Thank you for not stopping. Thank you for digging that toy out for me, even though it wasn't what I was looking for. Thank you for my sausages, even though I wanted tuna. Thank you for trying every single day to understand me. Thank you for knowing I am so much more than two words. My name is Frankie. Thank you for seeing me. And mum I see you too. And I love you."

The words that will never be said I hear so clearly in this moment.

I challenge you, on this International Day of People with Disabilities on December 3, to take a minute to look behind the curtain, that is just a couple of words. Just a diagnosis. Just a label.

If you have the privilege, as I do, of spending time with one of the people attached to these words, then stop. Sit with them for a minute or two. Let them introduce themselves to you.

I promise you, they are all worth meeting. Some of them might even change your life.