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.

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.

The Crumble Incident

In 2002, I was living in Inverness, Scotland. My fiancé and I were renting a fantastic little apartment that looked like something straight out of a catalogue. My favourite part was the kitchen. It was a tad on the small side, but perfect for two people. The floors were terracotta tile, the cupboards were light pine, the appliances were stainless steel, and the walls were painted a pleasant buttery yellow. There was even a washing machine.

The apartment came to us looking the way it did, but if the decorating were left to us, we would have probably done it the same way.

There was one little thing about the kitchen that was a little odd: the “hood” above the stove wasn’t really a hood… it was a piece of decorative wood in front of an empty space. We never knew why the landlord didn’t install an exhaust fan, but it was never really an issue.

In April of that year, my sister and her then-boyfriend were supposed to be coming all the way from Canada to visit us for a little vacation. It was the first time I had ever met The Boyfriend.

Knowing that my sister had a few dietary issues that we would have to plan around, my fiancé and I came up with a series of sister-friendly meals so that she wouldn’t have to feel left out. The day after they arrived, which also happened to be my sister’s birthday, the dinner menu was to include roasted chicken with mashed potatoes and gravy, steamed vegetables, and a mixed berry crumble for dessert.

I practically hibernated in the kitchen, making the dinner. There were dishes and ingredients everywhere- not a space to be found on the counters at all.

The Boyfriend popped his head into the kitchen and asked if there was anything he could do to help. I directed him towards a small baking pan, and practically threw some ingredients at him, telling him to put the crumble together… preferably in the dining room.

Put it together, he did. Like a boss. That thing was practically beautiful.

My man was doing what he did best, whenever I was busy making a big dinner: getting in the way. He got in the way at a champion level, picking that exact moment to “come in and help tidy up”.

By “come in and help tidy up”, I really mean “come in and magically be everywhere the wife needs to be”.

As I stood in front of the gas stove, sweating over my glazed carrots and mashed potatoes and dodging my man, The Boyfriend popped his head back into the kitchen and asked where he could put the pan of mixed berry crumble.

Knowing he’d never find a spot on the counter, I said: “Put it on top of the cupboards, it’s clean up there.”

To this day, I do not know exactly what made him forgo all the other cupboard tops.

I didn’t even think about what he was doing as I moved aside a little to let him squeeze into an available space in front of the stove. I simply moved aside, and kept stirring seasoning into the mashed potatoes.

In retrospect, that was probably what saved me.

As The Boyfriend was about to set the pan down on what he thought was a surface just above the stove, I looked up in horror.

There was an instant of panic in my eyes as the crumble began its downward spiral.

“Crap!” I shrieked, as the pan hit the stove top. The berries, and all their juices, went everywhere. Dark purple juices went all over the carrots, potatoes, nicely roasted chicken, the walls, counter, floor, you name it.

Everywhere but on me, apparently. I still have no clue how that happened.

I turned around. There behind me stood my man and The Boyfriend, with nice dark purple berry juice all over their white t-shirts and khaki shorts.

“Right!” I commanded. “Strip, you two!”

“Huh?” The Boyfriend asked, stupefied.

“You two are about the same size. You can borrow some clothing from my fiancé while I wash your clothes. If I get them into the wash right now, I can save them.”

I have to admit, I took no small amount of pleasure in the fact that there were two good looking men stripping down to their skivvies in my kitchen.

I managed to save their clothing from an evil stain, even if I never could get the berry juices completely off my nice yellow walls after that.

The dinner turned out to be oddly delicious. We had berry-flavoured roasted chicken, berry-flavoured glazed carrots, berry-flavoured mashed potatoes, and berry-flavoured gravy.

Needless to say, I never let The Boyfriend live it down after that. I made sure to tell everybody that I had him strip for me practically the day after meeting me.

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 F Bomb

swearingI used to be a lot more shy than I am now, and a lot less inclined to swear, when I was younger.

Then, I let some crappy people into my life. Now, I swear like a trucker.

It’s cathartic for me- I swear to vent my feelings, so that I don’t have to explain to a judge why I killed so-and-so. I’ll admit, sometimes I swear to get a reaction, too.

It isn’t as though it reflects a poor intellect on my part, either. Not to be vain, but I like to think that I am at least as smart as I am smart-assed. Technically, I could say the same stuff in a much less vulgar way, but frankly it wouldn’t be as inherently satisfying.

My thought is that swearing is fine, but you don’t do it until you know what the words mean and when you should NOT use them.

My partner and I do actually try to curb our use of the choice words, whenever we’re with our kids, but we don’t cut them out altogether. We simply explain that those particular words are “Mommy and Daddy words”, and hope for the best. After all, the F bomb and other words like it are an intrinsic part of what makes up our sarcastic, vulgar, smart-assed personalities. Without them, we just wouldn’t be the same people.

The problem is that not only are kids (especially A.S.D kiddos, apparently) like sponges, but they are also like broken records- they will latch onto something and, despite being warned not to, they will repeat that thing ad nauseam. My kids have done this to the point where their Dad and I are on the verge of being driven crazy by it.

My particular problem is that I find it hard to be stern with my kids when they say a word they shouldn’t, because I’m usually too busy laughing.

Case in point:

Jill had just abandoned her Magnadoodle, after writing the alphabet on it, and sat down to colour at the kids’ table. Jack, even though he actually has his own Magnadoodle, immediately pounced on the opportunity to play with two of them simultaneously. The look on his face was sheer joy.

Jill: “Jack, don’t erase my freaking letters!”

Me, wanting to use this as a teaching opportunity: “It’s O.K to say ‘freaking’, honey. ‘Freaking’ is a good word.”

Jill, while colouring: “’Freaking’ is O.K. I can say ‘freaking’. I can’t say ‘fucking’.”

It took me several minutes to stop laughing, before I could tell Jill not to use that word.

My kids’ future teachers are going to love us parents. I have a feeling there are going to be plenty of Parent-Teacher Interviews.

I can see it now:

Their dad and I will be sitting in front of the teacher’s desk, in a couple of chairs that are way too small to fit our asses, looking as contrite as we can possibly manage. Some teachers just have a way of making the parents feel like they’re also in need of disciplining, at those little meetings.

The teacher will say something like: “Your daughter has been using the F word in class lately.”

Me: “Aw, crap.”

Teacher: “Do you know where she might have learned that word?”

Me, shrugging and smiling innocently: “I don’t have a fucking clue where she could have picked that up. Do you, honey?”

The Dad: “Fucked if I know.”

The Art of Having Good Manners

rude-behavior1When I was growing up, manners were everything. If you didn’t mind your P’s and Q’s, you didn’t get what you were asking for, and it was as simple as that. More than just saying please and thank you when it was appropriate, we were expected to excuse ourselves when it was called for, and say “bless you” or at least “gesundheit” whenever someone sneezed, and what have you.

My partner came from a similar household, so we do our best to instill good manners in our children- especially when we are bombarded daily with a distinct lack of courtesy: kids who demand or take something without saying please and thank you, people who let doors shut in others’ faces, and so on. It makes me wonder what the parents were doing while those kids were busy growing up.

Now, I’m not perfect. My partner is not perfect, and neither are my kids. We all slip up now and again, but at least the effort is there. I can honestly say that, at age 5, Jill has a firm concept of what good manners are. Whether she always uses them… well… that remains to be seen.

One thing she never lets pass is the opportunity to say “bless you” when someone sneezes. I would even go as far as to say she is practically militant about it.

Although she has said “bless you” to a sneeze since we first taught her to many moons ago, a little while back she must have come to some decision to take it up a notch.

On the evening in question, my partner was lounging on the couch while working on his laptop. I was in the kitchen gathering up the dishes to put in the dishwasher. I had literally just put the kids through their bedtime ritual not moments before, so they were playing out all their leftover energy in their room. I could hear them talking and giggling and jumping on the bed.

My partner sneezed.

Out of the kids’ bedroom, there came Jill’s tiny voice: “Bless you!”

I don’t think their dad heard it. Not even a moment passed before Jill got a little more assertive.

“I SAID BLESS YOU!” she screamed.

I yelled back that Daddy said “thanks”, even though I know he hadn’t heard her at all.

After that evening, she started being almost obnoxious in her courtesy, when it came to sneezes. She let it be known that she expected a “thank you” when she gave her blessing after someone sneezed, only she didn’t really give them a chance to answer before launching her inner diva at them.

Lately, Jill has taken it up another notch.

About a week ago, we were in a similar sort of position. I had just put the kids down for the night, and was putting away some dishes while their Daddy worked on his laptop.

He happened to sneeze a few times (how dare he?).

Out of the bedroom, there came that tiny little voice again: “Bless you!”

And then, not seconds later: “I SAID BLESS YOU!”

My partner heard it this time, and said “thank you”, but I don’t think Jill caught it because it wasn’t a few more moments before I heard: “Did you say thank you?”

We both burst out laughing. If it weren’t for that fact, we would’ve answered her before she screamed: “SAY THANK YOU!”

I think her next step may be to come out of the bedroom and get right in the poor sneezer’s face. You know, before my daughter, I never would have thought simple courtesy could be aggressive.

The Bedtime Ritual

5f98828d2d81f27b0478d9828f7a372aMy kids are creatures of habit.

Well, perhaps it’s more accurate to say they are creatures of routine.

Jack and Jill can be flexible, when it comes to what goes on during their day, don’t get me wrong. They roll with the punches, as it were. As my partner and I have come to discover, however, there just some things that you don’t mess with.

Ever.

Not even if the house were on fire, and getting out alive meant Jill couldn’t wash her hands after going potty (because then you would have a house fire AND a screaming meltdown on your hands).

Not even if the richest person in the world offered you obscene amounts of money, but collecting it meant you had to pick it up at the doors of Walmart without actually going in to shop.

You just don’t mess with that kind of thing.

Here’s the deal, though: you can change a routine by adding to it, without any incident. If you take any part of it away… well… heaven forbid. I’m sure taking items away from a set routine is a popular activity for masochistic A.S.D parents.

I, however, am not a masochist.

With that being said, as I reflect on some of the weirder routines my kids have, I suppose I am probably a glutton for punishment.

For instance, the rational part of me knows not to add anything new to the bedtime ritual. After all, once something new is said or done, it can never be taken away, ever, until the end of your life as you know it. In fact, it’s this particularly idiotic trait of mine that has led to the bedtime ritual being the way it is. I shudder at the thought of an onlooker witnessing this nightly show.

Imagine, if you will, a small bedroom, crowded with furniture and toys. Imagine two small kids who are expert climbers and mischief makers. Imagine a little boy who has his own bed, but refuses to sleep in it because he likes to be near his sister.

There is a mom who, exhausted from the day, shuffles the kids into a darkened bedroom lit only by a night light, because the little boy’s compulsive fascination with flicking switches has led to the dad duct-taping the damn light switch in the “off” position.

Mom checks the room for hidden dangers because, if there is one, her kids will surely find it. It’s certainly part of Murphy’s Law and, well… Murphy’s Law is what masquerades as this particular Mom’s luck.

After a thorough look, she picks up certain stuffed animals as the kids hop up onto the bed: three little horses (Crystal, Tazzy and Jasper, after the ones Jill rides at therapy), a brown bunny, a Hello Kitty doll, Sick Bear- a giant teddy bear that is as big as Jill- a small black teddy bear, and a sock monkey doll.

The kids stand on the bed, waiting eagerly for their turn. Jill is first, and it goes like this:

Me: “Wipe your face.”

Slobbery kisses and a tight hug follow.  I’m pretty sure Jill thinks the words “wipe your face” are followed by an unspoken “on Mommy’s face”.

Crystal, the white horse, starts off this part of the routine.

Me: “Where does Crystal go?”

Jill: “On my left arm!”

I put the white horse down on her left arm.

Me: “Where does Tazzie go?”

Jill: “On my right arm!”

I put the brown horse down on her right arm.

Me: “Where does Jasper go?”

Jill: “On my left arm!”

I put the brown horse with the white mane and tail on her left arm.

Me: “Where does Bunny go?”

Jill: “On my right arm!”

I put Bunny next to Tazzie.

Me: “Where does Hello Kitty go?”

Jill: “On my chest!”

Hello Kitty goes smack in the middle of it all.

Me: “Where does Sick Bear go?”

Jill (with squeals and giggles): “On my face!!!”

Then, I count to three, yell “Bonzai!” and drop the giant teddy bear on her face. All you can see is a pile of stuffed animals, not unlike the one in the picture above (except, you know, inside) topped with the over-sized Sick Bear, with only two little feet sticking out at the end.

Jack’s part in this bit is thankfully simpler. With him, it’s a matter of counting to three before dropping the black teddy bear and the sock monkey on him, followed by covering everyone and everything with a blanket.

This is not the point at which I leave; no, no, no.

Because at some point in the past I couldn’t keep my mouth shut, I now wish them goodnight this way:

“I love you both. Don’t climb on the shelves. Don’t climb on the furniture. Don’t turn on the light. Don’t open the closet. Sleep well!”

Finally (blessedly), I get to leave the room.

One day I’ll get the clue: if the routine is perfect, don’t mess with it.

You Said What, Now?

your-e-cards-miltonious-101Being an autism parent, no matter where your kid falls on the spectrum, is not an easy ride.  When you factor in other people’s offerings or responses, the result can be frustrating or even heartbreaking.

I’ve come to believe that, when it comes to any sort of disability, there are four kinds of people out there:

1/ People who either have a disability, or are related to someone who does.

2/ People who may not be either of the above, but are knowledgeable and understanding anyway.

3/ People who have no direct experience, who are ignorant but well-meaning.

4/ People who are just plain assholes.

In my 5 1/2 years of being a special needs parent, I’ve encountered all three of the other types of people out there.  If I know that they aren’t trying to be jerks, I do my best to be polite.  Sometimes, though…  I really wish I had the balls to say what I’m thinking, out loud.

Since I’m not that sort of person in real life, I figured I’d put together a list- a list of the worst things I hear as an autism parent, including how I usually respond and what I would really like to say.

Fair warning: my attitude’s showing.

1. “All kids do that”, or “All kids have weird fears.”

How I Respond:

“I guess so, to some degree.”

What I’d Really Like to Say:

“Really?  Are your kids afraid of dandelions?  Do your kids cover their ears, or slap their head when they’re upset? Do your kids break into screaming and crying fits when you brush their hair gently?”

2. “That’s funny, they don’t look Autistic”, or “I never would have known!”

How I Respond:

“You really have to spend some time with them to notice.”

What I’d Really Like to Say:

“Funny you should say that, because you don’t look like an idiot.”

3. “It could be worse”

How I Respond:

“Yeah, I guess so.”

What I’d Really Like to Say:

“I know there are kids who are lower functioning. I know there are parents with more than two special needs kids. I know there are kids in wheelchairs. I know there are fucking starving kids in fucking Africa. I’m expressing frustration, and what you’re doing is the opposite of helping.”

4. “He/she’ll outgrow it.”

How I Respond:

“You don’t outgrow Autism, you just learn how to thrive in spite of it.”

What I’d Really Like to Say:

“Do you have any idea how much therapy and extra teaching will go into turning my kids into fully functioning, independent adults? They don’t outgrow it- we just teach them how to work around it.”

5. “He/ She’s so cute. It’s a shame about the Autism.”

How I Respond:

“Why is it a shame?”

What I’d Really Like to Say:

“Why is it a shame? My kids are pretty awesome little people, if you give them a chance. They’ve just got a different way of expressing it.”

6. “They’re just trying to get attention.”

How I Respond:

“I know what ‘trying to get attention’ looks like, thanks.”

What I’d Really Like to Say:

“Really? Because I thought that all the inconsolable screaming, crying, ear-hitting was a meltdown. My kid is having a sensory-overload meltdown, you ass. They aren’t ‘trying to get attention’.”

7. “Don’t Autistic people have special talents, or something?”

How I Respond:

“Sometimes they can appear to be talented in one particular area, like anyone else.”

What I’d Really Like to Say:

“Sure. My daughter can fly, and my son can shoot fireballs out of his eyes.”

8. “I don’t know how you handle it/ I couldn’t deal with that.”

How I Respond:

“It’s stressful, but we just keep pushing forward.”

What I’d Really Like to Say:

“How do you know? Have you tried it?”

9. “Like Rain Man?”

How I Respond:

“Um… no.”

What I’d Really Like to Say:

“You know, I enjoyed that movie. It really did a lot to raise awareness for people with Autism and other learning and sensory disorders. The problem is, now everybody thinks all Autistic people are like the fellow on Rain Man. Seriously, crack open a book, or at least Google it.”

10. “Everyone’s a little Autistic”, or “She/he’s just being a kid.”

How I Respond:

“Seriously?”

What I’d Really Like to Say:

“Oh, well that makes it O.K then. By the way, thanks for undermining our struggle.”

11. “Let them stay with me for a while- I bet I can fix them.”

How I Respond:

“Thanks, but we’re handling it.”

What I’d Really Like to Say:

“Is there someplace you can go to fix your attitude?”

12. “There’s a word for that kind of behaviour: brat.”

How I Respond:

“My kids aren’t being brats, they’re just having a bad day.”

What I’d Really Like to Say:

“There’s a word for your kind of behaviour: asshole.”

13. “It’s nothing a good spanking won’t fix.”

How I Respond:

“You can’t beat the Autism out of a child, you jerk.”

What I’d Really Like to Say:

“I’m guessing your parents didn’t succeed in spanking the asshole out of you.”

14. “So he/she’s a retard?”

How I Respond:

“No, he/she is Autistic. Please don’t use that ugly word when referring to my children.”

What I’d Really Like to Say:

“That’s funny, I didn’t think my kids were even related to you.”

15. “He/she’s one of God’s special little children.”

How I Respond:

“I guess so.”

What I’d Really Like to Say:

“Why? Why should my kids be considered any different from any other kid? Sure, they’re special to me, but they shouldn’t be put on a pedestal or set apart from other children.”

16. “I hear it comes from the Dad.”

How I Respond:

“Well, that’s one theory.”

What I’d Really Like to Say:

“Well, that’s one theory…out of literally hundreds.”

17. “I’m sorry to hear that.”

How I Want to Respond:

“Thanks, but we’ve got a handle on it.”

What I’d Really Like to Say:

“Why are you sorry? My kids are awesome.”

18. “You must really have your hands full.”

How I  Respond:

“You bet!”

What I’d Really Like to Say:

“Doesn’t any parent?”

19. “He/she can’t be Autistic, because he/she speaks.”

How I Respond:

“Yes they can. Not all people with Autism are non-verbal.”

What I’d Really Like to Say:

“Oh. Well, I guess she’ll just have to stop talking, so that everyone will believe me when I tell them.”

20. “You won’t even be able to notice they are Autistic, when they are older.”

How I Respond:

“One can only hope.”

What I’d Really Like to Say:

“Do you know how many hours of therapy and specialized teaching they have already gone through? Do you know how many hours they will have to go through between now and adulthood, just to be able to function normally, like everyone else?”

21. “Everyone is Autistic these days.”

How I Respond:

“Um… I guess so.”

What I’d Really Like to Say:

“The reason it seems like everyone is Autistic these days is because it’s being researched and diagnosed better. We have better tools and tests, and are able to properly diagnose those people who, only a generation ago, might have been considered a dreamer, anti-social, or severely mentally disabled.”

22. “God only gives you what you can handle.”

How I Respond:

“I guess so.”

What I’d Really Like to Say:

“I really wish God would see fit to send a babysitter my way every so often, so my partner and I can take a break from what God thinks we can handle.”

23. “Did you get him/her vaccinated as a baby? I heard that vaccines can cause Autism.”

How I Respond:

“Yes I have, and that’s only one theory as to what causes Autism.”

What I’d Really Like to Say:

“There isn’t enough conclusive evidence to support that theory, actually. Frankly, even if it were true, I’d rather have kids with Autism than kids who die preventable deaths because they weren’t vaccinated properly.”

24. “Does he/she ever sit still or stop talking?”

How I Respond:

“Sometimes, but they are naturally very busy and chatty.”

What I’d Really Like to Say:

“Do you ever stop being an ass?”

25. “What end of the spectrum is he/she on?”

How I Respond:

“They are high-functioning.”

What I’d Really Like to Say:

“Why does that matter? Will it make you treat them differently?”

 

Well, there you have it: the things that make the Momma Bear in me come out.

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.