The Flat-Packed Life

build-all-the-ikea-furnitureI’ve heard it said, once, that building a life is a lot like building a fine piece of furniture.

I can’t remember who said it, but I would really love to smack that person.

I can only think they must have been talking about building a life without children, or the limitations that come with illness of any sort, or financial hardship. They certainly weren’t talking about raising multiple children with special needs, on a very restricted income, while trying desperately to cobble together something of a career. That effort is like constructing the Taj Mahal out of popsicle sticks and white glue, or at least that’s what it often feels like.

Now, I’m not totally inept when it comes to building things, whether it is a piece of furniture, a child, or a life. Prior to having Jill, I researched everything “baby” like a madwoman- I took in every bit of advice I could, whether it was useful to me or not, and tucked it away in my mental filing cabinet. I learned how to do things- things like canning my own baby food, and how to get disgusting messes out of clothing. I hoarded baby gear like a… well, like a hoarder.

I came into this whole parenting thing, feeling pretty confident about showing off all my new-found awe-inspiring knowledge and devastatingly incredible supermom skills.

I was all of that, and humble too!

I was going to build that piece of fine furniture.

I was going to show it who was boss.

When the baby came along, though, all that confidence got up and left the building. As the years have gone by, it’s become increasingly obvious that my life is not going to be at all like a fine piece of furniture, hand-crafted by yours truly.

Really, it’s more like a piece of flat-packed furniture from Ikea, built with a lot of determination and swearing.

More to the point, it is like a piece of flat-packed furniture from Ikea that came with a poorly written set of instructions, an inadequate supply of screws, and dinky little tools that seriously sucked at doing what they were supposed to do.

If I have learned nothing else in my life to this point, I have learned how to make something good out of what you have got.

So, here I am, in the middle of the bits and pieces. Here I am, the instructions thrown away, cursing and swearing a blue streak, and building until I have put together a bookshelf or something that looks more or less like the one on the package. There at my feet, are the leftover screws (from the inadequate supply) that should have been up there on the project with their buddies but are somehow lying on the floor among the leftover packaging.

Instructions be damned- I’m winging it.

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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.

Confessions of An Evil Parent

suspiciously-evil-sloth-meme-generator-hehehehe-all-is-according-to-plan-0229e8.jpgI had my kids by C-Section.

As I lay down in the hospital bed, carefully holding my oldest (Jill) for the first time, I was bemused and still a little addled from the morphine that they knocked me out with.

My first thought, as I looked down at this tiny little bundle that had just been literally plucked out of me, wasn’t “Wow, I’m a parent now.”

It wasn’t “Oh my god, she’s gorgeous”.

It wasn’t even “I love you”.

Really, it was more like “I’m going to apologize in advance for screwing you up royally. Your therapy is going to cost a fortune, but this is going to be so much fun!”

See, I don’t believe there is such a thing as a perfect child, and that’s in large part because I don’t believe there is such a thing as a perfect parent. We all mess up from time to time. The thing that determines just how much your child is scarred for life is both how badly you mess up and how evil you are.

Now, I’m not talking about abuse. I’m not talking about being a drug or alcohol addict with no intention getting off the substance. I’m not talking about anything that is blatantly harmful to you or your child. In my opinion, that’s not screwing up your child, it’s outright failing them.

I’m talking about the kind of thing that makes your child embarrassed to be seen with you out in public. You know: the not-so-subtle evil that only parents are truly capable of achieving.

As you may have figured out by now, I’m not a perfect person or a perfect parent. Not only that, but I pride myself in being evil.

I’ll give you an example.

One fine summer day, before there was any serious talk about having children, my man and I were out hiking an old forest here on Vancouver Island. We were bantering happily back and forth, our little bear bells jingling merrily as they dangled off our backpacks.

Being outdoorsy on this island means that having a bear bell or two… or twenty… is just plain smart. Bears are common, and therefore an encounter with one while you are hiking or camping is a very real possibility.

Anyway, back to my story.

As I walked along the trail, a little smile crept across my lips.

“You know, if we ever had a kid, they would come in pretty handy when we go out hiking,” I said to my partner.

My man, being both awesome and equally evil, naturally encouraged the obvious set-up. “Oh?” he asked. “Why is that?”

“Well, we could get them one of those little walking harnesses,” I began. “You know: the ones that look like a stuffed animal backpack, and have a leash attached? We could sew a bunch of bear bells all over it, and put it on the little tyke whenever we go out hiking. Then, all we’d have to do is give the leash a little jerk every few minutes to make the bells jingle.”

“That sounds like a great idea,” my man added. “In fact, while we are talking about scarring our future child for life, why don’t we name it Horatio Zaphod?”

The thing with the leash and the bells hasn’t happened yet. I haven’t given up on the idea- I just think it would be a lot funnier if we do it when our kids are teenagers. Especially if we’ve invited some of their friends to come along on the hike.

I all-out vetoed the name idea. I mean, I know I’m an evil parent, but that’s just plain cruel.

I Am Who I Am!

thefunnysideofautism

Who is my little boy, or should I say BIG BOY!!! 

Sometimes I look at him and I see all the things that he wants to be and would be if his disability didn’t make it hard for him.  He is a softy that will lay by you, take your head in his hands and cuddle you like you are his new born baby. He is a comedian who will watch you working out to the most exhausting workout video and then drink your water like he is working out himself. He is so intelligent that he can find that exact spot in his video that will make him laugh over and over again in a few seconds, while it would usually take the average person 5 minutes to forward then rewind just to get close. He is inquisitive, trying to see if what I have hidden in my hand…

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