Friday, April 11, 2014

Independent Filmmaker

Today's post is a short one.

For the Pink Shirt Assembly this week Dude wrote, story boarded, directed and edited a video. I was there on the day of filming just to make sure he got all the shots he needed but that was all the adult involvement he wanted. It was his concept that he fleshed out with his best buddy over pizza and chips at our place one Friday night. He recruited the background actors and he scouted the location. He did it all and I was relegated to the status of a PA for the morning of the shoot.

From my vantage point, manning the clipboard and holding back traffic in the hallway between takes, I was blown away but the focus and leadership he displayed that morning. The shy and mumbling boy melted away and a decisive, collaborative director stepped forward. He was relaxed and kind with the cast yet wholly focussed on getting his message on film. He ticked off the checklist of shots need then declared the shoot wrapped. I followed him to the lab for editing but he stopped me at the door.

"I've got this, mom," he said as he gently yet firmly closed the door on me.

My feelings were a little hurt and I was more than a little worried about the finished product but when he showed it to me, and the guidance counsellor, a week later I got goosebumps and teared up a little. The message in the video was in itself enough to start the waterworks but knowing that my boy did this on his own, that he worked with a team and crafted a piece of art that spoke his heart, moved me.

Everyday since he was a wee boy caught in the tangles of Autism I have prayed that he would find his way to independence and see his own strength realized. This video is evidence of this prayer being answered. He's determined to reach his goals and to Stand Up and Speak Out against injustice along the way. He is determined to be a good person and he is committed to changing his world.

I'm so very, very proud of him! Take a moment to click on the link and watch.

The Note Video

If that doesn't work click here to view the video on our local radio station's blog. It's a write up on the assembly and Dude's video is about halfway down.

“Do your little bit of good where you are; it's those little bits of good put together that overwhelm the world.”

~Desmond Tutu

Thursday, April 10, 2014

Silent No More

Yesterday, Dude and Crafty's school celebrated National Pink Shirt Day. This day began a number of years ago when a boy in Nova Scotia wore a pink t-shirt to school and was bullied for it. The next day a couple of classmates showed up at school with 50 pink t-shirts to hand out to the other boys in the school. That day they sent the message, loud and clear, that bullying was not okay. These kids became part of the solution in their school and now Dude and Crafty have become part of the solution in their school, too.

Most kids have felt that they've been bullied at some point during their school career but for us, because of Autism lives with us, dealing with the aftermath of bullying becomes nearly a full time job. Not only are kids on The Spectrum a fairly easy target of meanness but they have a much more difficult time understanding the why and the what next of bullying. Because kids on The Spectrum don't pick up on social cues and nuances everything everything has to be explained in detail and are often best received when explained as 'rules'. The problem arises then when everyone doesn't follow the 'rules'.

Dude working tech for the assembly
For instance, Dude was having issues with a classmate. She was offended by the way he expressed himself and she had begun to lash out at him, verbally and physically. He was absolutely frustrated and confused at her behaviour. When the principal sat them both down to talk our their issues, Dude was shocked to hear that he was offensive when, in his mind, he was just being honest. She asked if he liked her drawing. He said 'no' because he doesn't like cats. She was talking to friends about Lord of the Rings and said dwarves are better than Elves but, according to Dude, that's simply not true because Elves are excellent archers - and he told her so. These types of exchanges went on for a while, understandably, frustrating her to the point of near insanity.

When the principal explained that although Dude was speaking the truth, from his perspective, he was being unkind and tunnel visioned in his delivery. As soon as he realized that he bore some of the responsibility to the friendship breakdown he apologized and waited for forgiveness and an apology from his classmate for her part.

He waited.

And waited.


Then he blew up. He was hurt and appalled that he was playing by the rules, as explained to him by us, and his classmate wasn't. She refused to forgive him and absolutely refused to apologize for her behaviour toward him. The conversation ended with the rift unresolved.

Dude came out of the school that day spewing venom about his classmate and friendship in general. It took us hours to talk him down and reason with him. We tried to explain the unexplainable. We tried to reason the unreasonable. By the end of our two hour conversation we were able to get him to accept that not all families have the same rules to relationships, and not all kids respond the way their parents would like them too (including him,sometimes!), but in This Random Family we do our best to be kind, forgive and move on.

He generally accepts this for friendships gone awry but when he becomes the target of aggressive kids that he has no connection with or previous interactions with, he is dumbfounded. He doesn't understand how someone can be randomly mean to someone else. He doesn't know why he is the target when he hasn't done or said anything to the aggressors. He can't find sense to the cruel and malicious behaviour.

We've told him there is no reason and it doesn't make sense but there is something he can do about it. He can be part of the solution. He can stop being a bystander, he can stop turning a blind eye to other targets. He can stand up and speak out - against cruelty, against injustice, against bullying.

Crafty and her pal reviewing their speech
So Dude and Crafty and four of their friends formed a small yet mighty band of school changers. They came together with support of teachers and parents and decided to make a change in their school. These spark of change has become a movement and today they invited the entire school to join them, to be the change.

This group of grade 6 and 8 students found a slogan, designed t-shirts, wrote speeches, produced a video and honed their message. They hosted a school wide assembly and together they stood in front of their 500+ classmates and asked them to Stand Up and Speak Out with them.

Because of their intense sense of justice, Dude and Crafty both understood the importance of standing up for what is right - they just didn't realize that they could do it, right in their own school, right now. They didn't know that their friends would support them. They didn't know that a group of ragtag middle schoolers could turn the heads of the entire community and shine a light of truth and friendship wherever they go. They didn't know that they, and their pals, could change the culture of their school.

They didn't know but we did. We, who know the greatness inside them, the depth of their caring and their desire to be a friend and have a friend. We, who love their quirkiness and celebrate their individuality. We, who know that when you play to their strengths their potential is limitless.

When Dude was first diagnosed seven years ago we were told that he would never feel or give love and he would never be able to feel or express empathy. We were devastated and discouraged but as time went on we realized that the psychiatrist was wrong. He only knew what Autism could take but he didn't know the strength of heart inside of our boy. He didn't know that he loves so much that it overwhelms him, that he cares so much that his heart aches and that he empathizes so much that he physically feels the pain of others. He didn't know - but we did.

If you are blessed enough to have a special kid like this as part of your life, play to their strengths, support them, challenge them and encourage them. Tell them they have a voice and show them how to use it. Show them that they can make a difference, that they are agents of change. And love them. Love them. Love them. Love them.

Love them enough to teach them to play by the rules, even if no one else does.

Silence in the face of evil is itself evil.
~Dietrich Bonhoeffer

Here's link to one of the local news stories from yesterday.

Wednesday, April 2, 2014

Autism in our World

Today is World Autism Awareness Day and as friends, family, neighbours and classmates have donned The Blue in a show of support I've been reflecting back on our journey with Autism. As I wrote about yesterday, we are in a much different place today than seven years ago when Dude was diagnosed. We have all grown, matured and learned volumes about life with Autism and on the surface it might appear as though living with Autism is no big deal for us but that would only be partially true.

Our day to day life is much easier to manage than some other families. Dude is verbal (maybe too verbal sometimes!), high functioning and very intelligent (often too intelligent for his own good).

-- This blog post is interrupted by an Asperger's moment --

I started writing this post three hours ago. I was just beginning to write about how much easier our life is now and how well Dude is doing when he burst into the room in a frantic fit of upset because of something that happened at school that he couldn't understand. He was on the verge of a full fledged melt down because he couldn't understand why someone would behave inconsistently towards him.

We talked for two hours and just as abruptly as the conversation started it ended. It was 15 minutes past supper time and I hadn't even started cooking it yet so he dismissed me. Now dinner is done and cleaned up and he is content to continue to work on the language he is inventing. That is the reality of Autism in our world.

A friend once described life with Autism as 'living in a minefield, never sure of when or where the next explosion will come." I have never heard a better or more accurate statement about Autism. On the surface a minefield looks like a field. It might even look like a pleasant field with flowers or grass growing on it but its not until you step into the field that you realize how unpredictable and jarring this field can be. As long as nobody moves nobody gets hurt but that's not how life works. You have to keep moving, life is in constant motion so you are at constant risk of experiencing an explosion.

When Dude was little we could have fifteen to twenty explosions a day - no joke. Now that he is older we can go a day or two without hitting a mine but when we do watch out! He takes it personally when life doesn't work out as he expected. He feels deeply betrayed when others don't play by the rules of social norms, as he understands them. He is defensive when his actions, words or attitudes are questions because he is terrified of making mistakes.

Because we live in a minefield we spend countless hours painstakingly digging up mines and defusing them. The ones we can't defuse we mark and do our best to avoid as we move about our field. And sometimes the mines we fear the most are duds; they aren't loaded and we've been stressing for nothing.

Sometimes people walk by our field and comment on how nice it seems, how lovely it must be to live in our field, how easy it is for us. Outwardly we smile and thank them for noticing, inwardly we scream, 'You've got to be kidding me!!!' because we know the hours, the tears and the stress that has gone into defusing our field.

Sometimes I get angry and frustrated. Often I am exhausted. I walk the thin line between optimism and bitterness, one moment of self pity could push me into the abyss, so I just keep moving forward, marking and defusing as best I can. When self pity does threaten to overwhelm me or when anger simmers just below the surface I remind myself that if I feel this off kilter then how does Dude feel?

He didn't choose this wiring system we call Autism. And neither did Crafty. They aren't trying to be difficult or defiant. In fact, they are desperately trying to make sense of a world that is as foreign and strange to them as their world is to us. They want to connect with people, they want to love and be loved. They want to relax, laugh and enjoy the world but how do you relax in a mine field?

You see, the minefield isn't them or their reactions. The minefield is the disconnect between our worlds. Sometimes the mines are set off by their Aspergian points of view and just as often mines are set of by my emotional reactions to a world that makes no sense to me - their world.

So today I think of its not really World Autism Day but Autism World Day - a day to acknowledge and respect that Autism is it's own world within our world and our world is a world inside Autism. We are separate yet overlapping, apart yet together - coexisting in one giant field ... trying to dance between the mines.

I have my own little world but it's okay, they know me here.

Tuesday, April 1, 2014

Autism Lives with Us

April is Autism Awareness month and tomorrow, April 2, is World Autism Awareness Day although everyday is autism awareness day in our world.

Two out of our three kids have a form of Autism and I firmly believe that if Mr. Awesome were tested he'd be right there with them. Even though two members of our family have the diagnosis we all live with Autism, we all think differently, do things differently and see the world differently because Autism lives with us.

At this point in our lives most people who know us casually may not notice Autism in our midst. It's quieter now. It's been tamed. It hides behind learned social graces and practiced politeness. It has been taught to think before it reacts and to trust more than it fears. Autism has matured in our family, it has been taught to speak the common language and we have learned to speak its language. We understand each other better now. We are on the same team ... but it hasn't always been this way.

We used to be afraid of Autism. We saw it as a thief and a murderer; it stole our happiness in the present and it killed our dreams for the future. It broke into our lives and brought chaos and stress into everyday moments. It turned our kids against us and made us a spectacle wherever we went. Autism, for a time, stole our hope, our dignity and our sense of order in the world. Autism held us hostage; we rarely went out or mixed with other families because it was unpredictable and hard to manage. Autism, we thought, had ruined our lives.

In the midst of the chaos, fear and sadness we saw a flicker of light. It was small and weak but it was there. This light would shine in quiet moments of puzzle solving, of nature walks and of hours spent watching the History Channel. The light grew stronger over time and we began to actively look for it, even in the midst of chaos. This light, this little blue light, was curious and quirky and intelligent. This light saw the world in a way that made mundane things seem new. It shone on buildings, on animals, on science and on history. And it shone on me.

I saw myself as a teacher, a nurse and an adventurer in the glow of this light. I saw myself as a translator and fear slayer in every shade of blue. And I saw myself braver, smarter and more loving than I thought possible when this light was with me. Then I saw that this light was Autism.

I began to recognize the strengths and beauty of Autism. And all the possibilities it brought with it. I stopped trying to make Autism behave the way I wanted it to and started listening to the language it spoke, seeing the way it moved through the world naturally. I looked for the benefits of Autism and coaxed it through its challenges. I encouraged my kids to get to know Autism personally and to understand what it is to each of them, individually. The more time I spent learning about Autism, the easier it got to teach it without containing it, to work with it rather than against it, to love it rather than hate it.

Autism is neither a thief nor a murder. It does not take from us. In many ways it has added to us. It has taught us to be more patient, more forgiving and more open minded than we were before it moved in. Autism has taught us to live acceptance and to love diversity. It has revealed that gifts and talents come in many shapes and packages. And despite its own rigid tendencies, Autism has taught us to expect the unexpected and to adapt to its little surprises quickly. Autism has taught us that different in not less and that there is more than one way to view the world. It has made us laugh and hope and dream. It has made us choose our battles and celebrate every victory. It has made us be deliberate with our words and honest in our intentions. Autism has made every moment a teachable moment.

Autism lives with us ... but its not who we are. We are a normal, laughing, teasing, learning, loving, growing, dreaming, forgiving, serving, mistake-making, messy, chaotic family. We are brilliant and we are ridiculous. We are brave and we are strong. We are bold and we are caring. We are Random. We are beautiful ... and Autism lives with us.

"Not everything that steps out of line, and thus 'abnormal', must necessarily be 'inferior'"
 - Hans Asperger (1938) 

**Check back all this month for posts about Living with Autism**

**Don't forget to wear blue on April 2 in support of World Autism Day!**

Friday, March 21, 2014

A Group Project

I've never been a huge fan of group projects. I like the idea of them but the reality hardly ever resembles the idea. When I was a kid and the teacher announced that we would be doing a group project I would experience a brief moment of hope and excitement at the thought of working with my friends to complete a project in perfect unity thus attaining high grades and a closer connection with each other in one fell swoop. This optimistic moment would only last for a few seconds before my guts would twist with dread and anxiety.

What if no one chose me for their group? What if I got stuck working with the kid who never bathes or the one whose homework always looks like it was sent through the garburator before being handed in? What if no one liked my ideas? What if they wouldn't let me help? Or what if I get stuck doing all the work? 

Even writing this now I am feeling anxious as I remember the group projects gone wrong from my childhood. Times when work wasn't done, when bickering caused the group to disintegrate, when I was kicked out of the group, when I wanted to kick someone else out of the group, when I did get stuck working with the kid that never bathed and our project looked like it had been sent through the garburator. But there were other times, times when everything went right and it was magic.

I failed my grade twelve English Lit class. It's true. I did. At first I thought it was the worst - and most humiliating - thing to ever happen in the history of the world but it turned out to be one of the greatest gifts of my life. Because I failed the English Lit course in my first semester I had to take it again during the second semester and then take my English option course at night school. I ended up getting into an option course at the university and I loved it. My second semester English Lit course was filled with other 'failures', oddballs and ESL students ... and it was marvellous! Both classes were filled with back to back group projects which translated into new and interesting friendships, unique projects and fantastic grades.

Through that one course failure a door was opened for me to learn about the beauty of relying on friends, opening my creative process to others for support, encouragement and ideas and that if I want it done right I don't need to do it myself. In fact, if I want it done right, I need to trust the opinions, talents and abilities of others. I learned that group projects are fantastic!

I learned all this as a teen but somehow through my adults years some of these truths have faded away. I've forgotten how exhilarating it can be to share ideas and strategies with others. I forgot how fast friendships can form while working on a project together. I forgot how much sweeter the sense of accomplishment is when it's shared.

As many of you know, last summer I wrote a book. It's an inspirational book based on my own life experiences. I've spent the last several months trying to figure out how to publish it. I've looked into getting an agent and submitting my manuscript through traditional routes. I've also looked into self-publishing. I've chatted with friends, fellow writers and industry professionals and I've spent a lot of time praying about what's next. Sadly, for me, there was no divine sign or moment of clarity so I'm just giving this a go. I'd like to self publish this book but I can't do it on my own. Every time I've started to save up the cash to pay for the printing fees some other regular life issue pops up and my little stash of cash diminishes. So, I've turned this into a group project.

Many of you have been supportive and encouraging through my blogging years beyond my expectations. Your kind words have been a balm to my soul and in my darkest days have shone a little light into my life and I thank you for that. I feel as awkward as heck asking for more from you but here it goes ... 

I've opened an account with an online fundraising site. My goal is to raise $4,000 to publish my book and order extra copies to donate to Siloam Mission in Winnipeg, Manitoba and Teen Challenge. If you'd like to donate towards getting my book published you can go to Go Fund Me to view my profile and donate. I also invite you to click over there to read a chapter from my book, just to get a feel for what I've written.

Thank you for being in my group ... whether your contribution is a kind word, a message of support or a financial donation I appreciate it greatly. I love being in this Group Project called life with you!

Individually we are one drop. Together we are an ocean.
~Ryunosuke Satoro

Friday, February 28, 2014

38 Complete

Today I completed my 38th year of life.

I'm pretty stoked about that because I'm not always great at finishing things. I've written before about how I am easily inspired and often start a project with grand ideas. But usually by the halfway point, right around the time when things become more like work and less like fun, my enthusiasm fizzles and I bail, leaving projects either incomplete or hastily thrown together. Because of this chronic lack of follow through I tend to be very hard on myself. My inner dialogue regarding this less than desirable character trait is pretty harsh and ugly, but last night I stopped the conversation.

Last night, as I started drifting off to sleep with the list of all my unfinished work swirling around my brain, I had an epiphany. 38 times I've started a year and 38 times I've finished the year. I have started and finished 38 years, that's 1,976 weeks. 13, 832 days. That might not seem like much to be proud of at first thought but it is.

38 times I have looked a new year in the face and agreed to give it a go. 38 times I have journeyed through the year ... sometimes with smooth sailing, sometimes slogging it uphill the whole way. 38 times I have survived and thrived in whatever the year threw at me and 38 times I finished with a thankful heart.

Life is hard and messy and lovely and exhausting and wonderful and overwhelming. Life is a gift that's almost too much to bear sometimes. Unexpected things happen. Disappointments. Disease. Accidents. Heartbreak. Exhaustion. Depression. Ugliness creeps in and whispers to you to just give up, to call it quits, to allow the darkness to overtake you. But there is another voice. There is the voice of light and life and joy. The voice that reminds you that after every darkness there is light, that finishing is the best way to beat the Ugliness.

I'm proud of myself for finishing 38 years. I'm proud of my stretch marks, scars, laugh lines and extra pounds. I'm proud of the lessons I've learned during this life that I've lived. I'm proud that I know more now that I did ten years ago, that I love myself better and certainly love others better than I did then. I am proud that no matter what life has thrown at me I have stuck to it, I have stayed the course. I am proud to have crossed the finish line 38 times.

The thing is, life isn't a sprint. It's that long race on the oval track (I know, very sporty of me to know the technical jargon), the one where you pass the finish line easily at first but that doesn't mean you're done because there are many more laps. You keep running past the finish line, counting off another lap successfully completed as you continue the race. The finish line becomes less of an end point and more of a marker to how far you've come. Each time you pass it, each time you start a new lap, you sign up for more of whatever the race has for you.

If you're reading this give yourself a pat on the back because you've finished every year that you've started, too. You've not given up. You've kept on moving forward despite hardships, despite difficulties and despite whether you've felt like it or not. You've stepped into each new year, willing to give it another go, whatever may come your way. You are on the track, ticking off laps, too. Yay for you!

And, yay for me, too! 38 laps finished ... many more to go!

Here's to more love, more friends, more growth, more wisdom, more challenges, more victories, more joy, more peace, more compassion and many, many more finishes!

“Ends are not bad things, they just mean that something else is about to begin. And there are many things that don't really end, anyway, they just begin again in a new way. Ends are not bad and many ends aren't really an ending; some things are never-ending.” 
― C. JoyBell C.

Monday, February 24, 2014

What to Expect ...

I have a few friends who have recently become mothers. They were so cute during their pregnancy with their little pregnant bellies and their trendy maternity clothes. They oohed and aahed over their chic diaper bags that coordinate with their ergonomically correct strollers which are a perfect compliment to their swanky infant sling that has some kind of unpronounacable european name. They went to prenatal classes, pre-joined mommy groups, studied infant massage and read up on what to expect once they had baby in hand. Boy, did they read!

They bought books, read blogs, googled and googled some more. They became experts on what to expect but, seriously, they had no idea what they were in for! Even now, months later, with countless sleepless nights, innumerable puke stains on their strollers and a funky smell inexplicably coming from their once beautiful diaper bag, they still have no concept of what this motherhood journey is really all about. And those of us with tweens and teens laugh at them. And those with older teens and young adults laugh at us.

As I look back over my nearly 14 years of motherhood, one thing has become glaringly obvious; those first few years, the years I had studied for, planned for and read up on, those years were the easiest years of this journey ... the easiest by far. I am, by no means, discounting the adjustment, the stress and the feeling of utter inadequacy that new motherhood brings. I remember well struggling through colicky nights and unexplained fevers and rashes. And I also remember the moment by moment decision to just keep moving forward even though post partum depression was calling me to a dark, isolated place. I remember. I remember.

But what I've come to realize is that there were aspects of those days that were so easy. It was easy to create a bubble in my home. It was easy to pretend the world outside of our four, finger printed walls didn't exist. It was easy to be the gatekeeper of who and what affected our lives. Caillou was annoying so we didn't watch it, Raffi's songs gave me a headache so we didn't listen to them. Veggie Tales made us laugh so we sang those songs. Colouring was fun but play-doh was messy so we spent hours colouring and the giant box of play-doh collected dust on the shelf. Nothing existed in our world that we did not allow in.

Then came Kindergarten and everything changed. Our Wee People began to mix with other Wee People. And they learned from each other. Most of it good but some of it not so good. And that exchange of information went both ways. Fast forward a few years and you'll find me longing for simpler days.

Sure, I'm still dealing with funky smells but this time they are coming from my teen age son's room and not the diaper bag. But more than that, we're dealing with influences that can't be easily shut off or turned down. Our everyday life is filled with the unexpected, and mostly unwanted, drama that occurs when you pile 500 hormonal, impulsive teens and tweens into a building for seven hours a day, five days a week and expect them to learn.

So, to my pals with infants and toddlers, I'm going to pass along some wisdom that a few of my friends who are further along in their motherhood journey passed along to me ...

What to Expect After You've Expected

~Develop a good poker face.
     Your kids will say shocking things, do shocking things and ask shocking questions and like the old commercial says, "never let them see you sweat." Whether your kid is saying and doing to shock you or they are coming to you, looking for answers, with genuine curiosity don't let your shock/horror/confusion/panic show. Keep your wits about you and at least appear to be stoic. Keeping your emotions in check will keep the door open to future conversations. If you don't wig out, your kid is more likely to come to you first when they need advice, information or a soft place to land.

~Be honest.
    If you don't know the answer, it's okay to say you don't know. If your feelings are hurt, it's okay to tell your kid. If you're having a tough day, it's okay to let them know. Your kids don't need all the details to your life's struggles but they do need to know that disappointments, hurts and ...well, life ... happens to us all. They need to see that you can come back from a rough day, that you can be appropriate in your anger, that you can grieve, forgive and make mistakes without it being fatal.

~Being good is good enough.
     One of the best, and most freeing, things ever told to me was that I didn't need to be an exceptional mom to raise exceptional kids, I just needed to be a good mom. As moms, we can easily stress ourselves out, trying to keep up with what we perceive other moms are doing. All you need is five minutes on pinterest to convince yourself that you are an inadequate parent because you don't make baby food from scratch, you aren't 'going paleo' and you bought valentines instead of hand making them. We set unreasonable expectations for ourselves and then flog ourselves when we don't meet them. Your kids don't need the world's best mom, they just need you ... you are good enough.

~Be intentional
     If you want your kid to know something, you are actually going to have to teach them ... repeatedly. When your Wee Babe was first learning how to walk you didn't talk to them about it once, help them to stand once and then expect them to know what they were doing from that point on. You let them see you walking. You held their hand as they walked. You caught them when they stumbled and you helped them to stand again. You walked along side them. You called them to come to you. And you celebrated when they finally could walk on their own. You understood that it was a process. You understood that in order to teach your baby to walk you were going to have to model, practice, coach and be intentional with them. That process never stops. Anything that's really important, anything that is worth teaching your kids, is going to be a process. You are going to have to be purposeful when you teach them to persevere, to be selfless, to be brave, to be authentic, to be kind. You are going to have to walk them through with baby steps. You are going to have to be patient. You are going to have to be intentional.

I'm sure there's more to this sequel of What to expect but these are the chapters I'm stuck on. These are the ones I have to read over and over again before they truly sink in. These are the ones I study so that I can make it through this phase of motherhood. These are the lessons my children are teaching me. And, as hard as they are to learn, I thank my kids for having the patience to teach them to me.

There's no such thing as ready. You just jump on a moving train and you try not to die.
~Vic, What to Expect When You're Expecting