It's hard to believe it's been almost four year since autism entered my life. And like an unexpected dinner guest that at first is fascinating and charming - but after a while grates on your nerves - it shows no sign of leaving. Ever.
So I've tried my best to get acquainted and be a gracious hostess...er...mom. Raising my son is still a largely mystifying experience, but there are some takeaways I've learned along the way:
When my guy likes something, he likes it to the point of obsession. Kids on the spectrum can fixate on anything, really. I've heard stories about children who loved vacuums, knew everything there was to know about vacuums - every make and model since the thing was invented. In my son's case, up until recently it was the alphabet. Letters were sentient beings to him, and he treated them the way typical kids would dolls or action figures. He even taught himself the ABCs in half a dozen languages. Just for kicks.
All I heard about 24/7 for YEARS on end was letters. Not Hot Wheels, not Lego. My boy's fascination drove me to drink, I'm not kidding. Yet I knew if I wanted to connect with him, letters were that inroad. Exasperating though it was, I devised games like hide and seek and memory matching using magnetic or foam letters. And it worked. Tapping into his passion brought me closer to him. Sometimes it was the only way to connect with him.
That's the thing about autism: it's the whole package. An integral part of who he is. Autism is what makes him funny and charming and difficult. Loving him means, in some warped way, also loving autism because it's inseparable from what makes him him. So I've had to check my own expectations time and again. That means letting him be himself and not trying to steer or shift his interests. Yes, even now that he's a seven year-old boy obsessed with Shopkins!
So much of a child's future depends on the detective work you do while they are young. It's not about fighting or haranguing (although sometimes if push comes to shove, you may need to do just that). It's about putting on your Sherlock hat and shopping around until you find the school or the therapy that is right for YOUR child. It may not be the route everyone recommends; it may not be the most expensive or even the most popular option out there. Finding the absolute right fit for your child is often a trial-and-error process. My son has been to four schools in four years. I sincerely wish that wasn't the case. By the same token, I didn't want to see him stagnate in the wrong place for years. Time is precious for kids like mine. His development depends on getting the right supports in place from the get-go.
For all the talk of Autistics not being able to take 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 hard to understand what makes my son tick. At least once a day I wish I could pry open his complex, beautiful brain and peek inside.
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 his carrots on the plate. Maybe the colour of his marker isn't the exact right shade of blue. Maybe that gorgeous walk along the beach to him is like walking on shards of glass.
Thanks to videos like this one, though, we are slowly learning about how overwhelming the world can be to individuals with autism.
Although I can't profess to understand my son, as his mom I have to give it my best shot. Above all, I have to give him the benefit of the doubt. Most kids aim to please their parents, and kids on the spectrum are no exception. When my son acts out, it's usually because he doesn't know how not to - either because his senses are overloaded or he doesn't yet have the coping mechanisms to keep his shit together.
On a hard day I look back at how far he's come, and I remind myself to keep putting one foot in front of the other.
Autism keeps me on my toes. There is never a dull moment with it around. Autism is what makes our family awesome one minute, awful the next. For better or worse, I'm getting used to its company.