It's hard to believe it's been five years since autism entered my life. My son is eight now. Raising him remains a mystifying experience, yet I have learned some valuable lessons along the way:
Share his interests (no matter how weird or esoteric)
When my guy likes something, he likes it to the point of obsession. And kids on the spectrum can fixate on anything, really. I've heard of some who are crazy about vacuums, know each make and model since the thing was invented. In my son's case, it's the alphabet. Letters are to him what dolls or action figures are to typical kids. He started reading aged two, has since taught himself the ABCs in half a dozen languages, and even created his own. For fun.
Not Hot Wheels, not Lego, but letters, 24/7, seven days a week. This preoccupation should thrill his wordsmith mama -- alas, too much of a good thing can drive one to drink! And yet I've learned that in order to connect with him, letters are the inroad. Sometimes the only inroad. So I devise games like hide and seek and memory matching using magnetic letters. He draws and colours letters, and I oblige him by cutting them out. It's exasperating, yes, but it works. The willingness to tap into his passion brings us closer.
His special interests, like autism itself, is all-encompassing. It's what makes him funny and charming and difficult; it's what makes him him. I've come to realize that I can introduce new ideas and activities, yet for the life of me cannot hope to shift or sway his interests. I'm just grateful he hasn't discovered vacuums yet.
Never, ever quit advocating
So much of a child's future hinges on the groundwork parents do while their kids are young. Contrary to popular belief, advocacy is not about fighting or haranguing (although, if push comes to shove, it may require just that). It's about donning the Sherlock hat and shopping around until you find the school or the therapy that is right for your child, even if it's not the most cheap or popular alternative out there.
Since kindergarten, my son has been to four schools. Four. While I sincerely wish it wasn't the case, it took that long to find a place that could accommodate his needs while still challenging him. In other words, a place where he wasn't sitting around doing crafts all day long!
Get a PhD in patience
For all the talk of individuals with autism not being able to take on other people's perspectives (theory of mind), we do precious little to empathize with them and see the world as they do. Admittedly, it's sometimes hard to understand what makes my son tick. He rarely communicates his thoughts and emotions in a conventional manner. At least once a day I wish I could pry open his complex, beautiful brain and peer inside.
"Like it or not, autism is with us for the long haul. It's what makes my family awesome one minute, awful the next."
Behaviour itself is a form of communication. Being patient is a tall order when you have a kid who's continually pressing your buttons. You never know what will set off his fireworks. Maybe his peas touched the potatoes on the plate. Maybe the colour of the marker isn't the exact right shade of blue. Maybe that gorgeous walk along the beach to him is like walking on razorblades.
I can't always understand what drives my son. But as his mom, I have to give it my best shot, and above all, give him the benefit of the doubt. Most kids aim to please, and kids on the spectrum are no exception. Most people don't wake up thinking, "I wonder what I can do to make today suck." When my son acts out, it's usually because he doesn't know how not to. It's because he doesn't understand or can't handle something in his environment, and has reached his breaking point.
Like it or not, autism is with us for the long haul. It's what makes my family awesome one minute, awful the next. On a bad day, I take a breath and try to take stock. I look back at how far my son has come, so much further than anyone could have predicted. Then I look forward and remind myself to put one foot in front of the other.
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