The Difference Between You and Me: Raising disabled children

In between loading and unloading Jumby's wheelchair into the back of my SUV for what seemed to be the millionth time in a day, (and I wonder why my back is perpetually on strike,) I had a conversation with a stranger about what my daily life with the Jumbster entails.

While there was nothing particularly special about this conversation in and of itself, what struck me as I was yapping is that I will be doomed to repeat this conversation over and over again for the rest of my life like some poorly scripted Canadian version of the movie Groundhog Day.

"I don't know how you do it, Tanis. I couldn't do it. Most people couldn't do it. Most people can't look past the disability and see beyond their sympathy and discomfort to parent a child like Jumby."

"Parenting a disabled child is so much harder than raising healthy children."

"You and your family are very special people."

I've been having this dialogue since the day I gave birth to Shale and with the adoption of Jumby this discussion resumed once again.

Miracle Children and Altruistic Parenting Part 17 trillion! Now available in Version 2.o, completely not new with absolutely no improvements since the first installment!! Whoot!

Early on in Shale's life, I had to make a decision about how to deal with people who had no experience in living with disabled children. I had to choose between being driven crazy from the ignorance around me, or being driven crazy from trying to educate and alter public perceptions about raising differently-abled kids.

Since I've always enjoyed the sensation of beating my head against a brick wall, I went with the latter choice.

I actively choose to take the time to try and dispel any misconceptions or myths about raising these rock star children because, well, someone has to. I do it not just because I have a soft spot for challenged children but because I am trying to teach my family and the world around me that just because you can't see the value of something doesn't mean it doesn't exist.

However, this week, I'm a wee cranky when it comes to repeating this conversation, mainly because no matter how many times I repeat myself, there will always be another wave of new people crashing against my shore who will need to hear our truths.

There will always be someone who sees Jumby and looks away in fear or disgust. There will always be someone who can't see his beauty beneath his drooling smile or slumped frame. And just like there will always be people who insist on using the word 'retarded' in a derogatory manner, there will always be people who can't fathom the love and rewards involved in raising these children.

This saddens me, especially when the real untold truth of the matter is, these children hold the secret of true joy and pure love clutched tightly in their tiny twisted hands.

Or in Jumby's case, he keeps the joy hidden in his new spanky casts.

The real secret to raising handicapped children is there is no secret to raising handicapped children. Like healthy children the basics are the same. You feed them, water them, shelter them, love them, clean up their messes and hope like heck that they leave your heart intact at the end of the day.

Just like you would any child.

My husband and I didn't plan to raise health-compromised children. The only thing we planned was the orgasm that gave us said kid and even that was more of a 'playing it by instinct' action than any real choice.

When we discovered our third-born was severely disabled, we did what anyone would do. We cried, whined and railed against the injustice of it. But once the tears ran dry we got down to the business of raising our baby. The same way we raised the first two children we hadn't planned (to this day I still don't understand what birth control is).

Raising Bug was different from his siblings only in that he came with more equipment and different expectations. It required more patience, more prayer and a completely different set of milestones. And while the mechanics of raising a medically fragile child were different than raising a robust child, it felt the same. Triumphant, frustrating and rewarding. With a heaping side of guilt and self-doubt.

So it was an easy decision to choose to adopt a special needs child after Shale passed. And while we blindly ticked off every box describing every available handicap known to mankind when we filled out our adoption application, neither of us actually thought we'd end up adopting a child who had every darn disability known to science. But when Jumby came to us, we knew that regardless of how many disabilities he had, or the severity of those disabilities, we could do it and it wouldn't be any more frustrating than trying to convince my 12 year old son to embrace personal hygiene and use some darn soap.

Most people believe they can't raise children with disabilities simply because they never had the opportunity or experience to be around them. People fear the unknown. I, personally, was less than enthusiastic about Bug's diagnosis when I learned about it because holy cannoli! I don't know what to do with a disabled kid! I can barely handle the two healthy kids I have now!

But the thing is, I adapted (sometimes willingly, sometimes less so,) just like most people would. For every mother who gives up and ships her child to Russia with a note saying she doesn't want him any more because he's broken there are a thousand parents who rise to the challenge of learning how to parent a child with a disability.

In the end, parenting these children is not a whole lot different than raising healthy kids. Yes, there can be moments of extreme stress but those moments are guaranteed with healthy children too. Life comes with no safe guards and no assurances and it doesn't matter how many precautions you take, bad stuff still happens.

Children die; children get hurt. Monsters hide under everyone's bed no matter how many times you try and shine a light on them.

But what kind of life would any parent have if we focused on the fear of the unknown instead of embracing and appreciating the known?

The day-to-day aspect of my family to yours isn't all that different. We have temper tantrums and laughter just like regular families. Sure I have syringes and pumps, wheelchairs and standing frames littering my house, but I also have a mountain of dirty socks waiting to be washed, posters of sparkly vampires tacked to bedroom walls and the sounds of Justin Bieber ringing in my ears.

Some people take their kids to dance recitals; I take mine to the hospital for Botox.

Instead of running myself ragged driving my son to soccer games and football practices, I'm chauffeuring him to clinics, hospitals and medical supply shops. You are buying helmets, shin pads and crotch protectors; I'm out grabbing medical diapers, hearing aid batteries and medical grade plastic tubing. Either way, we are both spending more time road running than a taxi driver and we are both going to end up with less money in the bank.

Parenthood. Ain't it grand?

And while I like to think my family really is the cat's meow, I'm pretty sure every parent feels that way. It is mandatory just like its mandatory kids won't eat anything unless it's covered in ketchup.

Parents to disabled children aren't saints or any more special than the parent that has ever had to pick the snot out of a crusty nostril or spent the night awake worrying about their child's safety. We are just regular parents who are lucky enough to love extraordinary children.  We are all heroes to our children, and if we aren't then we need to try harder.

So I explained to yet another person, once again, for what was the umpteenth time, that raising Jumby isn't so very different than raising Sally, Jim or Sue. To the untrained eye it may look like Extreme Parenting (minus the eating live bait or chicken testicles) but really it's not.

(It's more like Survivor: Parents vs. Children, No Holds Barred.)

Our routines may be different than yours and certainly more complicated and time consuming than most, but in the end, it is just that: a routine. One filled with laughter and love and a heaping spoon full of sugar to make sure all the medicine goes down.

Just like our kids, our families may look different on the outside, but I promise you, the love feels exactly the same.

I am inviting you all to stop peering in from the bushes and come on in to see exactly how alike our chaos really is. I promise you, we don't bite.

Well, okay, Jumby totally bites but he does it out of love.

Mike Tyson ain't got nothing on me. I'll chew anyone's ear off, in or out of the ring.

What to do if Your Blog Gets Hacked

When I was a little girl, my brother built a two story tree fort with his friend and banned me from entering. In an attempt to avoid parental prosecution for his misdeed, he instituted a broader NO GIRLS ban, hoping he could trick my parents into believing it wasn't just me, his annoying, smarter, more talented sibling he was banning, but the entire half of the human population who had to sit to pee.

My parents didn't buy into his argument any more than I did, but they decided that my brother Stretch had a right to his own privacy and warned me to keep away. Which, of course, was like dangling a carrot in front of a rabbit and telling them not to nibble at it. It became my life's mission to break into that fort and hack through my brother's security and see just what was on the other side of those plywood doors.

It took me a while and it was certainly a lesson in patience, but after a few failed attempts which typically ended with my brother sitting on my chest and dangling a loogey in my face, I managed to sneak my way into his ten year old nirvana.

The fort itself wasn't anything special. But the bottom level was carpeted in purloined shag carpet from somebody's basement and the upper level was covered in wall to wall posters. It was an artful mix of hair bands and big naked boobs.

It was as I was staring at the biggest set of boulders I had ever seen in my young age (I was nine) I realized all the effort and the trouble I had gone through had been for naught. Sure I managed to successfully annoy my older brother but it turned out the only thing he was hiding was the fact he stole a Playboy magazine from somewhere. I don't know exactly what I thought I would find once I managed to pry my way in, but I do remember being bored silly once I was there.

After that, I never bothered to try and gain entry again. It was much more fun to watch my brother squirm as I threatened to tell on him for his choice of wall paper than it was to actually hack into his space.

This week, my fort was hacked. Except, unlike my brother, I don't have green shag carpet or pictures of playgirls on my walls. These walls are virtual and other than a few odes to Billy Ray Cyrus and Nickelback scribbled across them, they're fairly clean.

Talk about a pain in the ass, having your blog hacked. Not only was my itty bitty blog threatening to blow up the internets but I'm pretty sure my head was a mere millisecond from popping off when I was trying to clean up the joint.

I have new empathy for how my big brother must have felt when he discovered I had taken a permanent felt tip marker and scribbled moustaches on his wall of whores and drew happy faces using all the nipples staring back at me.

Please forgive me Stretch, I knew not of what I did...

I've learned a lot of things during the four plus years I have been blogging, but how to fix a broken blog has not been one of them. So I did what I do best. I panicked. Then I cried. Then I cursed. Then I grabbed my big girl panties and took the bull by the horns.

It's a process yo.

Since I couldn't fix my blog, I begged the internets to do it for me. And a big fat smoochy kiss to each and everyone of you who came through for me. A bigger sloppier kiss to my web designer, Judith Shakes for putting up with my whiny ass emails and calmly telling me to pull my head out of my arse, it wasn't the end of life as I knew it. It only felt that way.

Perspective, I needed it.

While I can't tell you exactly what she did to my blog to fix the malware some hacker so very kindly decided to install when they broke into my castle, I can tell you what NOT to do.

Don't threaten to blow up your blog permanently, because hours later when your web designer does that very deed (on purpose) you may be forced to eat crow. And crow never tastes good no matter how one prepares it.

Don't call your husband in hysterics when he's in an important meeting. He's trying to keep men safe and alive and you are crying over people being re-directed to a Russian-rent-a-wife site. He may or may not roll his eyes at you and tell you to get over yourself.

Don't ignore the problem because, like the ostrich with it's head in the sand, it's still there. And Russian women are being rented by the minute while you try and rub the grit out of your eyes.

In the end, my blog survived and my sanity remains, clinging to that lone thread it normally dangles by. So no real harm I suppose. Except for all those people who were hoping to use my blog as a gateway to Russian bought happiness.

So Stretch, I know it's 25 odd years later, but I'm really sorry I hacked into your fortress. Mom and Dad were totally right when they said what goes around comes around. You can keep your shag carpet and your wall of boobs, I promise to never peek again.

In the meantime, I give you full permission to hunt down my hackers like you hunted down yours, tackle them to the grass, sit on their chest and drop off a loogey surprise right between their eyes.

What goes around and all that noise...

Holy Spitballs, I Survived

In an effort to try and restore normal family function around these parts, I did the unthinkable. I volunteered to be a supervisor for Fric and Frac's grade seven/eight class field trip to the local science centre.

Actually, I less volunteered and more groaned and whined when I discovered my kids had forged my signature and then threatened a mutiny if I didn't play along. My children? They should teach hostage negotiations to local law enforcement agencies. They have it down to a science.

But since I'm a sucker for their puppy dog eyes and have no life of my own, I decided to play along. I mean, it's just a class field trip. What could go wrong?

Feel free to stop laughing at me any time now.

With much less fanfare and applause than I felt I deserved (heck, if I had my way, the school halls would be lined with balloons and streamers as I walked towards the school bus amidst the excited chants of adoring children, "Go Tanis! Go Tanis" and I'd be handed a trophy carved from pure gold as I board the yellow tin box of doom), I took my seat on the dreaded school bus and tried to make myself as inconspicuous as possible.

My son, the charming shit disturber he is, foiled my plans to blend in seamlessly by insisting on having me sit next to him and then standing up beside me on the bus and loudly announcing that yes, I was indeed his mother, not some hot chick who had a thing for junior high science field trips.

Every kid on the bus had to turn around and size me up and I knew right then I was in for a rough ride. When the supervising teacher  handed me my itinerary I knew I was doomed. It's always a bad sign when the teachers wish you luck in a furtive manner while reminding you not to look any of the kids directly in the eyes. "For the love of God Tanis, don't engage them. Just survive."

Before I knew it, the bus doors pulled shut and the games began. With each jostle and bump of the road, I was reminded once again why I hated riding the school bus when I was in school. The windows refuse to open, stuck from years of grimy paws and bubble gum sealing them shut, no seat belts and an acoustic sound that every concert hall in North America would covet.

I swear, every time the back end of the bus hit a pot hole not only did my brains rattle behind my eyeballs but the noise decibel rose accordingly. What in God's name did Steve Jobs make the iPod for if none of these technophile children refuse to put in their ear buds and use it??

After the what seemed like the world's longest bus ride from hell (although, admittedly it could have been worse. I could have been stuffed on this bus with teenaged jackals alongside caged poultry, gassy goats and screaming babies while crossing a desert.) we finally arrived at our destination.

Excitement was rife and the hormones were thick. As the kids found their groups I looked at my list and the size of the groups around me. Somehow I managed to pull the largest crowd and teens were begging their group leaders to be released into my custody. Since the other grown ups were apparently smarter than I, they leapt on the opportunity to get rid of one of their charges as I stupidly and naively gave my permission for random pimply brats to join my pack.

I took comfort that if we were a street gang, my crew would kick some ass and dominate all the other little packs.

Fric, excited to have me watch her in her natural habitat.

Once everyone had filed into the building and split into their supervised gangs groups, the fun began. I had no idea what we were supposed to be doing and for the life of me, I could not find another grown up to ask for instructions. I was on my own. In a mire of quicksand with nary a rope to haul my sorry arse to safety.

If you are correctly imagining a gaggle of teens surrounding my swampy death as I slowly sink in my pit of doom, you'd be half correct. Include in your image a the predatory cackles as the teens stood around and poked me with sharp sticks and you have an accurate portrait of what the first half of the morning felt like.

I'm Dorothy, stuck in Oz. Meet the tornado responsible for the chaos.

As we wandered around the gallery looking at the exhibits, it quickly became apparent that the only learning getting done by anyone in the building was by the adults. Learning how to survive and keep our charges out of the clink. The kids were less interested in the dizzying array of fascinating experiments surrounding us and more interested in trying to prove to society why teenagers should be held up as an example of birth control for future generations.

I don't remember getting to play with fire in junior high. School has gotten way cooler since I got old.

As I observed the teens not learning, I learned a thing or two myself. Interestingly enough, in the twenty years since I've been in junior high, not much has changed. The cliques haven't changed. The popular kids, the invisibles, the rejects, the plastics; they are all still there, just as predictable and annoying as they were back when I was hip deep in the nerd herd, being hung by the back of my jacket (while still wearing it) onto the science door's coat hook.

Only now, time and gravity have erased the boundaries of my own teenaged kingdom and I have a hall pass to mingle with whomever I choose to. As I watched the children struggle within their own social structures I just wanted to pull up the pants of the kid who thought he was too cool to wear a belt and tell him that he'd better enjoy his status as ringleader because chances are when he's a grown up he'll be the lone guy sitting at the lunch table at the used car dealership where he works because no one wants to deal with his arrogance. I wanted to hug the misfits and tell them it was okay if these kids didn't like you now, it doesn't matter. All the school aged angst ceases to matter the moment you step out of high school for the last time.

I didn't though. I was too busy trying to keep track of my group as I was haunted with images of reporting back to the bus only to find half my kids had run off to join the circus. I don't know what the official punishment of losing other people's children is, but I assumed it wouldn't be as fun as getting a brazillian.

Frac proving he didn't fall far from the dork tree.

As I discovered on that field trip, trying to keep a dozen teenaged kids together and accounted for is much like herding cats. Just when you rope one cat in another strays. And they all give you the stink eye no matter what.

Just call me Buzz.

By the end of the day, I was ready to runt punt each and every child, including my own, to the moon. Yet my objectives had been met. All the children I was responsible for were accounted for and safely back on the bus and each and every one of them had been told at one point to behave or I'd put my boot up their arse.

I'm not sure how much science was actually digested by the future minds of our civilization, but enough gift shop candy was consumed to power a rocket to the moon. And while the kids may not have walked away with more knowledge than they walked in with, I certainly did.

Puberty is an ugly thing, and it is kind to no child. Junior high teachers are the unsung heros of our education system. Either that or underpaid babysitters to feral humans. I can't decide.

Spitballs are still funny but not near as hilarious as what the kids call fashion these days. And it's official. At 34 yrs, I'm older than dirt.

Although I'm fairly certain I didn't need a space science center to confirm that. The general hissing sounds a teenager makes when I walk in the room is evidence enough.