grass

“Make a green light choice!”, I said, my voice rising in exasperation.

Green light choices are those that are acceptable responses, said our autism specialist.

Red light choices, by comparison, are not.

Yelling and screaming was in the red light choice category. I was hovering dangerously close to making a red light choice in my pursuit of Kane making a green light choice.

It had been a long week. It was his third week at a new school, we were dealing with a lot of change resistance, and way too many rules.

“It’s not morning because the sun’s not out.”

“I’m not eating until the sun goes down.”

“You have to leave school before I go out for morning recess or you’ll have to stay at school all day.”

“You have to check on me before you go to bed,” (after already checking on him)

“My time on my timer doesn’t start until…you leave the room…you get to another room…I get downstairs…I get upstairs…I am on this particular space/time continuum.”

There is little room for ambiguity in the world of autism. I am made to conform to the literal, and prodded and pushed to follow “the rules.” These rules are formed based on Kane’s reasoning, however illogical to me. He is often frustrated if I don’t follow them, made even worse if I can’t follow them because I simply don’t understand them. Also, the tendency to create new rules or demand compliance is exacerbated by other stressors. When Kane is dealing with an uncomfortable level of change, this uptick in rules is his way of compensating.

This is the side of autism that is an everyday occurrence, and one in which we constantly seek middle ground. It can also, at times, be utterly maddening.

The conversation with myself goes something like:
I. Do. Not. Get. This.
Dig Deep.
Patience.
Understanding.
I do not know what to do.
I’m losing my freakin’ mind.
No, you aren’t.
Patience.
Understanding.
Deep breaths.
Try to stay calm.
I. Do. Not. Get. This.
What’s up with this kid?
Sigh.
I love this boy.
I know him.
I get him.
I know he’s stressed, and confused, and struggling.
I know he’s rigid because he’s anxious.
But damn, can he cut me some slack?
Okay, okay.
What do I need to do?

And then the answer comes: Guide him.
Firmly, but gently.
Lovingly.
With patience and understanding and compassion and kindness.

This piece of artwork hangs in my house:
Be Kind image

These are my rules. And for what it’s worth, I tend to get as upset with myself for breaking them as Kane does with me for breaking his. I’m in a bit of contention with the “Work Hard” one, but that’s because I feel that working hard means we give it our best and aren’t afraid to keep going when things gets challenging, not that it has to be hard work.

I am also not perfect. I’ve messed up many times. But that’s what growth is. It’s messy and it’s imperfect. I also know that I have a spectacular child, and autism is a piece of who he is, not the totality of who he is. He is first and foremost a human being, with all the amazing human traits and foibles as the rest of us.

This artwork isn’t meant to scold me for being human and making mistakes. That’s not the point. It’s meant to remind me of my important core values when I forget a little, when I don’t speak in a gentle tone or I don’t give freely from my heart. It’s not all-inclusive. There are certainly other values that I hold that could be added. But this speaks for all of them by reminding me of some key ones. And it’s no accident that it ends on the reminder it does.

Be Kind.

About Tabitha MacGowan

Hi, I’m Tabitha. I’m an author, autism parent, and advocate of acceptance, compassion, and love. I believe that we are all here for each other and we can co-create the world we want to live in. My book, Phig and the Eaven Prophecy, is a delicious fantasy written from the perspective of a boy on the autism spectrum. I invite you to join me and be a part of my magical world!

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