“BUT WHAT CAN I HOLD?!!”
My peaceful early morning was shattered by those five words, belted out at the top of my son’s lungs. They were followed by a mumbo-jumbo of incoherence that I couldn’t quite catch. Not from where I was comfortably seated in my morning “throne room” anyway.
But I needn’t strain too hard (no pun intended) to listen further. Already I had heard enough to know what was happening that very moment just outside my bedroom door.
Just another Friday morning, yet also surreal and unexpected in its sudden explosion.
Same same but different
One of the realities of living with a child with autism is that even though one day pretty much melts into another in its sameness and routine, that’s really just my humble opinion, my point of view.
His view however, will always be vastly different from mine.
For him and others like him, every slight variation becomes something of a major world event! That could be the shifting of a table a few degrees one way, or even a toy car that was not placed on, and aligned perpendicularly to, the edge of said table.
Welcome to my world of living with special needs.
In the past, I’ve talked about how the experts might have gotten it wrong when it comes to setting routines for special needs children. They say such kids thrive on routine and so it’s important parents ensure this to keep the peace at home. Yet my experience with my son and routines are rarely peaceful!
But, now I’m convinced that it is silly old me who’s got it wrong!
The idea of routine isn’t just about scheduled activities alone. It also has to do with the visible (and invisible) environment around them, and how the slightest change can be potentially catastrophic!
Of course, I’m also guilty of being fastidious when it comes to certain things being exactly where I last left them. Or keeping my desk as neat and clean as can be. Some may even see traces of OCD (even autism!) in my obsession that the toilet roll be carefully wound up in its holder just so. Or dining chairs must be fully pushed back under the table straight after a meal.
But you see, being aware of my quirky idiosyncrasies means that, at the very least, I can self-regulate when I choose to. I can leave the toilet roll alone or turn a blind eye to the dining chair sticking out of place.
That’s not the case for my son, and others like him on the autism spectrum.
For them, security is paramount. And one of the signs for kids with autism that their sense of security is being jeopardised, is when things aren’t where they’re supposed to be. It could be the seemingly-innocuous stuff, like furnitures shifted or toys mistakenly kept in a different box. Or it could be the big-ticket items, like a change of school campus, or when a parent’s not home by the usual time.
My experience is that it’s more the “little things” that will often trigger a meltdown for my boy. Those are the stuff we the still-often clueless adult sometimes overlook, even after being his main caregivers from the time he was born!
Like this past Friday morning on his way to school.
The little red bus
He wanted to bring along his favourite red bus toy as his mom was ushering him out of the house. It had been his routine the few mornings before, and though we don’t allow him to bring it to school, we let him leave it in the car. That way, he can have it again when either his mom or I fetch him home in the afternoon.
But not on Fridays.
We typically enlist the help of my in-laws on Fridays to pick him up after school and bring him over to their place for the day. So, if he wanted to bring his flavour-of-the-month toy, we would tell him no. He had to leave it at home while we arrange to have it brought over to my in-law’s later in the day.
Yep, that’s right.
First week of a brand new year. First week of school. New travel routes and routines. New campus. New teachers and classmates.
Go ahead. Say it. We the oh-so-enlightened parents walked straight into that one didn’t we?
And so his meltdown was nothing short of volcanic. It took Herculean strength and determination for my wife (bless her heart) to get him out of the house with a smaller bus from his older toy collection. All the while this head of the household was stuck on his “throne”, unable to rush out to assist.
Just another Friday yah?
It’s the small things that matter, silly
Here’s the thing.
To some degree, it’s about having his flavour-of-the-month toy with him. But to a larger degree, it’s about something more.
It’s about holding onto the thing that would assure him the world is still a safe space, a secure place for his fragile nerves, his gentle soul.
But when that sense of security is threatened, then all sanity goes out the window and it’s meltdown city!
Occupational therapist Kim Barthel talks about this when she says that the “world of our children (with autism) is not consistent”. To us neuro-typicals, each day won’t usually deviate significantly from the one before. The sights, sounds, scents, tastes and touches don’t vary significantly in ways that would upset our day, unless it’s pretty extreme. Like when my country left a sunny and warm 2020 and woke up the first day of 2021 to torrential rain that lasted two straight days!
But for kids like mine with autism, the slightest variation will trigger anything from a whine to a full-blown meltdown.
Like what happened that morning.
So having something precious and familiar to hold in his hand, helps to stabilise and regulate his emotions. And since his hands are still tiny, it’s the small things that matter.
So once again, the all-knowing adult in me has been brought down to a humble place by a kid.
I’m being taught again that if I don’t recognise his challenges daily, if I let my guard down instead of properly preempting those challenges, then my wife and I best brace ourselves for the ensuing onslaught.
As this new year rolls along, may I never forget yesterday morning and the lesson it’s teaching me again and again:
It’s the small things that matter, silly!