Living with Daily Defiance

Want to know how mind-slammingly hard it can be living everyday with kids? How about with a kid that ‘gets it’ but also doesn’t ‘get it’?

 Let me explain.

You see, it’s kind of hard working with children who have special needs like my Caleb. With him, it’s always a fight to transition to doing something different. It’s not that your neuro-typical kids aren’t also a handful. Of course parents all over the world have had to fight constantly when it comes to asserting their ideas and opinions and plans.

But this post really isn’t about that as much as it’s about the actual struggle.

With Caleb I often find that it’s both predictable and unpredictable. But when it happens, it will happen over a longer-than-I-would-like period of time! And it just shreds my patience to bits and pieces.

Like his eating.

He just doesn’t understand that simply staring at the clock will not stop time. So, even though he’s still many many mouthfuls away from finishing his dinner at 7.30 pm as agreed, in order to be granted his TV cartoon time, he won’t make it if he doesn’t consistently put spoon to food to mouth, but stares blankly or chats incessantly!

Like his morning routines.

He doesn’t realise that if he doesn’t decide in the next minute what toy he wants to bring out for his daily car ride to school, we will be late. And despite several warnings and attempts to have him decide earlier, even the night before, if the little man decides to change his mind right there and then as we’re about to put our shoes on and step out, then the tussle begins.

Like his insistence I drive only along a particular route to school.

Just so he can see his favourite coach park site located along the highway, or have Google Map announce out loud his favourite “bear right (then turn right)”. One day is fine. Two, cute. But everyday?

Like his bathing routine.

His insistence on standing naked in the shower waiting for instructions on how to bathe. And all the while humming/singing his favourite cartoon tune, or reciting what he recalls Google Map uttered that morning. At nine years of age, he still needs someone to be in the shower with him to help because he just can’t rub the soap on hard enough or reach places like the back of his shoulders. And if no one is there to supervise and bark out instructions, he will just stand still. Or he will just rub and rub the same few spots on his body over and over again.

And even when he gets out, he needs constant reminder on thoroughly towelling himself dry, otherwise he will just stand still stark naked, dripping wet, like he was waiting to catch his death of cold.

I could probably go on and on to list down all the areas that he clearly frustrates the heck out of me, his stay home dadd. I really don’t want to stay home every day of my life if this is what I have to deal with every single time. From homework to road safety awareness to social norms, he is just not responding to our various attempts to help him learn what he must to survive in this world.

And so there are days when I feel like I just want to wrap my fingers around his neck to shake and throttle him, as though by doing so I can really knock some sense into him and we can finally see some progress.

I know all too well how ridiculous I sound, but you wouldn’t think so if you were me, living everyday with someone who only wants to move to the beat of his own drum. It’s almost like he’s managed to completely tune me out at times. The things coming out of my mouth are just falling into empty space, making me wonder sometimes if I did actually say anything at all, so clearly unresponsive he is. And I know my son has good listening. He can hear thunder in the distant skies long before any of us, and he can even hear what we’re saying about him even when we’re in the next room from him, and speaking in quiet soft tones.

But I realise too that this is my lot as Caleb’s parent. Often times I’m so focused on changing his behaviour that, in truth, I’m not really sure if I’m doing it for his own good or for my own preference and convenience. I often suspect it’s the latter. Because this is how we shower, this is how we eat, this is how we choose how long we need to pick our favourite toy. But when you’re dealing with someone like Caleb, you must be ready for a fight every time if he is every kind of stubborn that we experience him to be every day.

And that’s just who he is. He has his logic, his reason. And the sooner I come to accept that, the sooner I can start to work with him, get his buy-in eventually and let peace be restored in the household.

But first, I must change. I must recalibrate my expectations and I must give him more time and space to adjust, because he just takes longer than most people. And most people was probably not what God had in mind when He made Caleb.

Yep, that mind-slammingly hard!

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