An Open Letter to the Lady at Tim Horton’s

being-judgemental-300x300You stood, a little to the left of the line-up, waiting for your food at the local Tim Horton’s. Well dressed, and with your hair done “just so”, you almost seemed too posh to be standing where you were. There was a scowl on your face that seemed so etched in that one would almost say it was permanent. You made no sound to anyone, but you didn’t need to: your general disdain was like a perfume whose scent you’ve become so used to that you can no longer tell how much you’ve put on.

I stood in the line with my family, 5 or 6 people back from you. We were there to treat ourselves to something nice, in an effort to shake off some of the residue of what had been a bad week. The expression on my face mirrored my partner’s: worn out, irritated and a little sad.

My daughter, thank the gods, was being on her best behaviour. She quietly eyed the display of delicious-looking cookies and donuts, knowing full well that one of them would soon be hers. This was rare for her. No, it’s not terribly rare for her to be getting a treat at one of her favourite places, but it is rare for her to be so well behaved while waiting for it.

Usually, she is one to act out the most out of the two kids.

My son, on the other hand, was determined to lie down on the dirty floor in spite of the grip I had on his hand. I must have told him to stand up, in a normal tone, about 10 times all told. He kept doing it regardless of what I said because, frankly, he can be single-minded like that. That inherent single-mindedness is not only part of being a little boy, but it’s part of being a little boy with Autism.

You wouldn’t know that he- and his sister, for that matter- was Autistic, unless you knew him well, or even just knew what some of the characteristics of Autism were.

It must have been after I had told him to stand up for the 8th time, that you turned around and looked at my son (who was still sprawled on the floor just then) with a roll of your eyes, and then shot me a dirty look. It was a look I’ve seen before, no doubt like many parents of special needs kids.

It’s the look seems to suggest I ought to discipline my child better, or maybe that I’m not a good parent.

It’s the look that asks, in silent judgement: “What’s wrong with your child?”

I ignored you then, despite wanting to tell you off for staring so rudely.

After the 10th time of wearily telling my boy to stand up and hauling him to his feet, his father chimed in, with a stern tone of voice- a command.

It was not a yell. It was not belittling or abusive. It was just a tone that brooked no argument. Our boy shot to his feet and stayed there.

That’s when your food arrived (thank god). You grabbed it off the counter, and stared at my partner and I in judgement and disdain. I didn’t say anything, but stared right back until you passed behind me.

As an Autism parent, I meet a lot of people like you- people who think that Autism is just an excuse for “bad” behaviour.

People who don’t think there’s really anything different about kids like mine, and that they should be treated- and expected to behave- like every other “normal” child out there.

People who call kids like mine retards.

People who think these kids’ “bad” behaviour is the result of bad parenting.

Your attitude, and that of many like you, is one side of a coin. On the other side are those people who believe all the clichés about Autism: that people with this disorder are always geniuses, or they have some special gift (think Rainman), or whatever.

I don’t have as hard of a time tolerating those people, no matter how irritating it can be to try to dispel the myths that have cropped up around Autism, because I know they aren’t saying them out of any disdain. It comes from a place of assumptions, but not from a place of judgement.

I can be at peace with their attitude, no matter how misguided it may be.

People like you, though, make my job as an Autism parent all the harder. As it stands, I find myself constantly having to advocate for my children’s rights and needs more than a parent of “normal” children might. Even though my kids are only 5 and 3, I have already had to stand up to quite a few ignoramuses on their behalf.

I know that my children will likely have a lifetime of dealing with bullies and people like you, simply because they don’t behave like other kids, and that truly hurts my heart.

I wish we lived in a world where people remembered that there are always two sides to a story. Things are not always the way they look on the surface.

The Almighty Schedule

20150314_201637Schedules are kind of a big thing in my household.

Like many autism parents, I’m sure, we have one of those dry-erase weekly schedules hanging up on our door. The point of it, besides detailing what activities each day had in store (including the mundane stuff, like eating), is to give the kiddos peace of mind and help them ease from one activity to another. It has the space to write either the days of the week, or the whole month on it if you are so inclined, and my super-awesome partner has printed out and laminated a bunch of little clip-art pictures to indicate different activities, such as an apple for mealtimes, or a clock for appointments.

There is even a little picture with a cartoon doctor and patient, to represent… you guessed it!… doctor appointments. Remember that, because it’ll be on the test.

Last Sunday, like every Sunday, I allowed Jill to watch me while I made the schedule for that week. She likes to “help”… and by help, I mean stand there and watch while I make the schedule, and then doodle 5 or 6 pretty little stars along the bottom of the calendar after I’m done.

Hey, it gives her a feeling of accomplishment. Who am I to judge?

Anyway, when I stuck the pictures on for all the usual daily things, I started with the other stuff. I put a little clock on Wednesday and Thursday morning, to signify that she and Jack had an appointment with their OT. Since the kids are on spring break, and since I don’t have pictures of dogs to indicate when we go to walk a friend’s dog, I wrote the name “Milo” where needed.

And then, there was the little doctor picture. Remember the doctor picture?

I put the doctor on Wednesday afternoon, and wrote a little “2pm” next to it, and thought nothing further about the whole thing.

I thought nothing further about it, that is, until Tuesday afternoon. For some god-forsaken reason, I thought I should double-check the appointment time on my Outlook calendar, where I make a note of every little appointment we ever have, anywhere.

Lo and behold, as I click on Wednesday the 11th, I find…nothing.

Crap.

I click on Tuesday the 10th, wondering if I might have missed it by accident.

Nope. Nada.

I stare blankly at my computer screen for a moment, a sudden feeling of dread coming over me. A little voice at the back of my head whispered: “Well, you fucked up.”

The kids were oblivious to my despair. They sat at their little table, colouring in a couple of activity books.
I eyed them carefully.

Then, like a desperate parent smuggling a freshly bought chocolate bar into their secret stash, I slowly put my laptop down on the couch. I quietly got up off the couch, wincing and shooting a glance at the kids every time the couch squeaked. I shuffled into the front hall, my back turned to the living room, and quickly moved the doctor picture over to Thursday.

“What you doing, Mommy?” Jill’s delicate little voice piped up, from directly behind me.

“FUCKING HELL!” I exclaimed, whirling around. “You scared the crap out of me! I’m fixing a boo-boo, honey.”

“You don’t say ‘fucking’, Mommy, you say freaking,” she informed me.

“Um. Sure,” I replied, forcing a smile. Straightening up, I tried my best to casually stroll back into the living room as if nothing happened… nothing was different.

Jill stood there in front of the wall schedule. She started crying. Jack, still sitting at the table, starting crying in sympathy.

Crap. Double crap.

Jill loves going to the doctor. She’d been looking forward to the appointment all week, even though she’s not sick and the whole point of the appointment was just to get a referral to another type of doctor. Nonetheless, the mistake was practically earth shattering as far as she was concerned.

I rushed back to my little girl, and started to comfort her, saying that I made a mistake and put the doctor picture on the wrong day. It took me 15 minutes to get her to stop crying, and when I did, she finally spoke up: “It’s in the wrong place.”

“I know, honey. I made a little mistake, putting the picture on the wrong day. We’ll go on Thursday instead.”

Jill appeared to accept that reassurance, just then, but appearances can be deceptive. In fact, in the couple of hours between that moment and dinner time, she positioned herself in front of the calendar what must have been 50 more times and stared at it. Even while she was colouring, or eating her meal later on, she repeated several times that the appointment was going to be on Thursday and not Wednesday, and that I had put the picture in the wrong time slot.

See… you just don’t mess with the schedule. Once you make it, it might as well be set in stone. It’s though you have climbed that mountain and chiseled it into those two tablets, because you might as well be Moses, with his Commandments.

On Love

angry wifeIn the morning, I accomplish what often seems like an impossible feat. Somehow, though, it happens… and only the gods know how and why.

I get myself up at 5:30 every weekday morning. The fight is epic. Every bone and muscle in my body screams “Sleep more! Text the teacher and say your kids are sick! You want more sleep! You NEED more sleep!”

Also, I am beginning to think my bed is in cahoots with the pillows and blankets. At least, that is the best explanation I can come up with. Otherwise, why would the few minutes before the Alarm From Hell goes off be the time when I am at my most comfortable and toasty?

It’s a conspiracy, I tell you.

Anyway, somehow- as if by sheer will alone- I pry myself off my bed, out of the reach of my cozy blankets, and propel myself vaguely upright.

My partner, damn him, is still lying in bed. I rationalize that I shouldn’t be too pissed off at the fact that he gets out of bed much later than I do. I tell myself the he gets up later because he is an insomniac (due to his P.T.S.D), and the morning is often when he gets the best chance to sleep. I tell myself all kinds of things like this, but the fact is that- when I’m awake too early for my liking and still half asleep- I kind of hate the guy.

For a moment, every morning before I head out of the bedroom, I have this particular urge. My partner would like this urge to be the sort of urge that sees me pouncing on his sleeping form, waking him in a pleasant but not-so-gentle way, and having my way with him then and there, only to leave him exhausted enough afterwards to (hopefully) fall asleep.

No.

It’s not that kind of urge.

As I stand there in the dark on my side of the bed for those few moments, I think about quietly going over to his side. I would look lovingly down at him as he lay there quietly. Whether he is actually asleep, or lying there and wondering what the hell I am doing standing there and staring at him like a creepy stalker… I don’t know. It doesn’t matter, anyway.

I think about bending over him, just inches away from his head, with a slight smile on my face.

“HAVE A NICE FUCKING DAY!” I’d scream, suddenly.

He’d sit bolt upright in the bed, cursing and swearing and flailing, and I’d duck and dodge before dashing out into the hallway. The possible injuries, I rationalize, might even be worth it. I’d be awake at that ungodly hour, and he’d be awake to share in it; after all, misery does love company.

Instead, I quietly exit the bedroom and leave him to sleep. Love has a way of making resist these little homicidal urges; it’s a good thing I love that guy.

The Christmas Competition

frustrationIt’s Christmas evening, and I’m sitting here with a tremendous sense of accomplishment.

No one had a serious meltdown.

No one got hurt.

I didn’t give in and take up drinking as a hobby.

Our day was split up, as it always is- we spent the morning opening presents at home, and then went to Gran and Papa’s house, and opened more presents there. It’s not Jack’s first Christmas, obviously, but it’s his first truly interactive one. He finally understands the concept of unwrapping presents, and I had been looking forward to seeing his reaction to the whole experience and the new-found freedom that is represented by tearing into brightly wrapped packages.

Now, my kids’ autism means that I can usually expect some sensory or behavioural issues to pop up when they are in an environment that is hyper-stimulating. After all, there are blinking lights everywhere, little decorations piping a constant stream of carols, a television on, tons of things with different textures, and a lot of general chatter going on.

Still, I had somewhat rose-tinted expectations. You’d think this was my first rodeo, or something.

In my head, Christmas was going to go something like this:

I’d get the kids out of bed. They wait in their bedroom every morning until I open the door. It’s freakin’ awesome.

I’d sit them at their table, and hand them the usual peanut butter and jam toast, before we all gleefully tore into our presents and stockings.

I expected giggling and happy faces on both kids, lovely mealtimes, and a general sense of wellbeing and accomplishment at the end of it for us parents.

I figured that after we all happily ransacked the space under the tree, I would get them dressed in their good clothing, and we’d bundle them into the van and truck the whole damn family off to Gran and Papa’s house for more presents and dinner.

In my head, it was going to go smoothly and not morph into a game of “Us Against Them.”

For Jill, this was pretty much how it happened. Well, more or less.

For Jack… not so much.

We managed to get them out of the bedroom and fed with no incident.

Parents: 1

Kids: 0

They finished cramming their chipmunk cheeks full of peanut butter and jam toast, flung their thankfully plastic plates onto the dishwasher and then high-tailed it (with cheeks still full) over to the tree, where they gazed raptly… at the blinking lights.

Getting them to sit next to each other on the floor so they could have space to tear open their gifts was a bit like herding cats. We’d get Jill to sit down, while Jack wandered out of the living room. Then, we’d get Jack to the floor, and Jill would stand up to play with one of the ornaments. This went on for a good ten minutes. Every time we managed to talk one of them into sitting down, the other would find some reason to get up and walk off.

Parents: 1

Kids: 1

The thing that worked was a stroke of genius on my partner’s side. He set up his camera. Did I mention he’s a photographer? Jack and Jill saw the camera, and promptly sat down with a big smile and a resounding chorus of “Cheese!” (it’s sort of a reflex). The only problem was, they were facing the camera, and not the tree. It was really half a victory, but hell, I’ll just round up the number. This one’s ours, baby.

Parents: 2

Kids: 1

When I started handing out the presents, Jill did her part with flair.

Jack… not so much.

He took the first present, and gently started to tear off the wrapping paper. I think perhaps one piece of tape was actually pried off.

Then, the wailing started. I figured he was frustrated, so I bent down to show him what to do. Every time I held the present out, he started crying again. Even though I know that he knows how to rip paper, I had to “show him what to do” over and over again until the entire present was unwrapped.

Parents: 2

Kids: 2

It was a couple of colouring books, to go with some crayons that were still wrapped and under the tree.

He fixated on the colouring books, and wouldn’t unwrap any of the other presents that we put in front of him. He accumulated quite a little pile of gifts at his feet, and wouldn’t so much as take his eyes off the colouring books until I took them out of his reach…

Parents: 3

Kids: 2

… and then the crying started again.

Parents: 3

Kids: 3

Jill, for her part, eagerly tore into her gifts, and only had something to say when we went too long without giving her something else to unwrap.

I figured the waterworks would stop when we bundled the kids into the car, and headed to Gran and Papa’s house.

Nah…not so much.

When the gifts came out from under their tree, Jill gleefully went into action. She was in her element! Jack… sat with the first present on his lap, and started crying. This bit kept on, until all the presents were doled out and Jill was happily playing with her new things. It has since dawned on me that I really don’t know what makes my son “tick”; I just got frustrated with all the crying, when the kids should have been happy, and “showed Jack what to do” until all his gifts were unwrapped.

By that time, it was past noon, and I hit upon a brilliant idea: I would stuff his little chipmunk cheeks full of peanut butter and jam sandwiches. It was lunch, after all, and he couldn’t wail if his mouth was full.

Finally, I found something that made the crying stop.

Parents: 4

Kids: 3

The afternoon was blissfully quiet, more or less. Jack and Jill took turns stealing each other’s toys, and then they each took turns being pissed off because the other one stole their toys. Dinner, which was delicious, was pleasant and only marred by the occasional frustrated wail when Jack couldn’t get food in his face fast enough. A lovely dinner was topped off by an equally lovely Christmas pudding.

My kids do love their Christmas pudding. If it had been the sort to be made with alcohol, they would’ve gotten rip-roaring drunk on it.

Thank the gods for small miracles.