Wednesday, April 30, 2014

The Gatekeeper

… otherwise known as 'The Mom'. That's me. As a mom, and particularly a mom of kids on The Autism Spectrum, I'm often asked what advice or tips I might have for other parents of ASD kids. I'm reluctant to give advice because each family, each kid is so unique that I know the things that have worked for me might not necessarily work for others. The only really helpful 'advice' I can give boils down to two mindsets that I've adopted in recent years and they've served me well.

1. I have a kid, not a diagnosis.
Whenever a situation arises with one of our kids the first thing I remind myself is that I have a normal 12 year old or 14 year old kid who happens to have ASD. Not every challenge, conflict or outburst is because of Autism. Sometimes kids wig out, have disagreements with friends or think school bites. That's just the way it is. So, when my kid comes to me with an issue I don't automatically jump to Autism as the culprit. My kids are more than Autism therefore their life has to be about more than their diagnosis.

As we work through the challenge together, sometimes it becomes evident that the struggle stems from their ASD perspective and that's fine. We address it and move on. And sometimes it has nothing to do with ASD and that's fine. We address still just address the issue and move on. Either way, my kids need to learn how to function and thrive in a nuero-typical world. They need to learn how to manage conflict and problem solve. They need to learn to respect themselves for who they are and to not use Autism as an excuse.

As long as we're talking about excuses … we have a saying in This Random House; Autism is not an excuse for disobedience, disrespect or bad behaviour. It's just not. There is no reason why children, with or without, any type of diagnosis can't be taught to be respectful and polite. It's harder to do with some children than with others but all can be taught. I have seen non-verbal low functioning kids learn how to use manners and indicate their needs calmly because their caregivers have taught the child, not succumbed to the diagnosis.

2. I am the Gatekeeper to their world.

When Dude was little he was an absolute sponge, and to a certain extent he still is. He was constantly studying the world around him, desperate to make sense of it. It was kind of like living with that robot from Short Circuit, "I need more input!" He took in everything he saw, good or bad, and applied it to his own social situations.

At first it was cute but soon we began to realize how sarcasm, 'slams', quasi-swears, verbal jabs/burns, mockery, mimicking and disrespectful tones and facial expressions were turning our boy into a brat. Some of these things he was absorbing through school and neighbourhood contacts but most of it he was observing in our own home, on our own TV.

We'd always thought we were careful about the shows and movies we allowed our kids to watch. We kept things rated G and Disney-esque but when we started really paying attention to what they were taking in we realized how wide we'd left the gate open and how rampant the wolves were in our sheep pen.

Many of the shows our kids watched, though marketed to kids their age, had characters who were wee smart alecs with stupid parents. The themes of most of the shows revolved around dating, greed and bickering. And in between shows the kids were blasted with commercials that quickly convinced them that they needed more toys, more food, more clothes, more EVERYTHING!

We tried limiting their TV time and the shows they were allowed to watch but we had a hard time policing them as they adjusted to the new rules. We also spent far more time than we wanted in negotiations and discussions of the 'why' and 'how long' of these new rules. So eventually we just gave up. No more negations, no more bickering and no more cable.

We cancelled our cable package and disconnected the internet from their computer. We removed all movies from the family room with the exception of Veggie Tales, everything else they had to ask us for. We also disconnected the Wii. We did a full stop on all screens for a few weeks and then we gradually reintroduced appropriate movies and limited gaming time with limited game options.

We aren't religious nuts and we don't think the world is full of evil influences. We do, however, think that we are responsible for what and how our kids learn. This is a weighty responsibility that we can't just shrug off on Family Channel. We need to be intentional with the influences we let into their lives. Even with us being as intentional and careful as we are, we are still constantly fighting against cultural norms and teen attitudes.

And being a Gatekeeper isn't just about stopping things from coming in but it's about inviting the right things in, it's about creating opportunity for learning. We explore, google, read, research and plan our vacations around learning something new. And we talk. We talk a lot in this house.

Everyday we have conversations about who we want to be and what we want to do. We talk about the impact we have on those around us and whether or not we are on track to becoming the people we want to be. And, before you ask, yes it's exhausting and no, I don't always feel like talking, explaining, reasoning and teaching.

 But I am the Gatekeeper and it's my job.

Whether you have a nuero-typical kid or a kid with extra needs, two things are true for all of us; Our children are sacred gifts and we are their first and best teachers. And with that I'll remind you of the best piece of advice I've ever received. My very wise and lovely friend Becky once told me that I don't need to be an extraordinary mom to raise extraordinary kids. I just needed to be a good mom.

Be good to your kids. Be good to yourself.

“When you want to teach children to think, you begin by treating them seriously when they are little, giving them responsibilities, talking to them candidly, providing privacy and solitude for them, and making them readers and thinkers of significant thoughts from the beginning. That’s if you want to teach them to think.” 
― Bertrand Russell

Tuesday, April 29, 2014

It's a Girl Thing

I am about to write about something I know nothing about. Usually I try to stick to topics I at least know a little something about but this time, I'm in the dark - but at least I'm not alone on this one. Most people are in the dark when it comes to this topic, even 'the professionals' are just taking educated guesses, for the most part.

It's a girl thing. It's a girl and autism thing.

Dude was diagnosed with Asperger's Syndrome when he was 7 years old, in 2007. At that time I had no idea what Autism was, I just knew that it was something I didn't want my kid to have. I spent months reading every book on Autism that I could get my hands on. I spent hours in the local library, pouring over medical journals, psychology textbooks and every obscure reference to Asperger's Syndrome that I could find. Slowly I pieced together an understanding of what Dude's diagnosis meant and how we might be able to begin to reach him. During this time we were also referred to a paediatrician who specialized in treating children with neurological issues.

At our first appointment with Dr. C she asked about our other two children. She wanted to know if we had any concerns about either of them. I looked at three year old Mischief, who was literally tied into the stroller, lest he break free and climb the bookshelves to 'web' people (a la Spiderman) and five year old Crafty who was wearing butterfly wings and sunglasses that looked as though they came from Elton John's personal collection and said, 'No, I'm pretty sure these two are … er … normal."

Every year, at Dude's big check up with Dr. C, she would ask about Mischief and Crafty too and every year I would make some wisecrack about how nutty - but normal - they were and I would walk away from the appointment with a wee twinge that maybe our normal wasn't exactly normal.

You see, Crafty wasn't exactly like other girls her age. She had a wicked vocabulary and an interesting cadence of speech. Her memory was like a steel trap yet she seemed to move through the world slightly off beat to everyone else. She was a habitual sleep walker and talker and she had a peculiar fascination with collecting like objects - so much so that we began calling her Meg-pie because she was like a wee magpie. She also suffered from intense social and environmental anxiety. But that was normal, right?

When Crafty was eight we realized that things with her collections were getting out of hand and had turned the corner toward hoarding. Her anxiety attacks were also beginning to resemble Dude's Aspergian meltdowns. When we met with Dr. C that summer I finally set the jokes aside and told her about my concerns with Crafty. She immediately set us up with an appointment with a children's psychiatrist. After a twenty minute conversation with the psychiatrist, all of which Crafty spent with her head under my jacket, the good doctor proclaimed that Crafty had an anxiety disorder and we were dismissed.

I spent the next year taking Crafty to appointments at the anxiety clinic every week but we saw little improvement. At the end of the year her councillor admitted that although Crafty certainly had issues with anxiety, there was something else going on with her. I felt it, too. All of her quirks and behaviours didn't stack up right, they didn't add up to anxiety alone. I saw hints of blue in the mix. I saw undeniable traits of Autism.

The next year was spent going back and forth with the psychiatrist and Dr. C. The school wrote letters to the doctors and the doctors explained to me, again, that anxiety 'fits'. It was a frustrating and at times humiliating year for me. The psychiatrist was making me feel as though I was crazy and on an Autism witch hunt. Finally, Dr. C stepped in and assessed Crafty for Asperger's. The test indicated that Crafty was, indeed, on the Autism spectrum. The psychiatrist disagreed.

After some more back and forth and hoop jumping Dr. C and the psychiatrist settled on a PDD-NOS diagnosis. And I exhaled … but only for a moment. Although her diagnosis was very similar to Dude's, Crafty's behaviours, strengths, challenges and quirks were so different. I didn't even know where to begin. And three years later I'm still pretty much in the same spot. Maybe even a little worse off.

You see, as Dude has matured managing Asperger's has become easier. He understand what Asperger's means to him and he's working on bridging the gap between his world and the neuro-typical (NT) world. He can play to his strengths and he's learning to ask for help when he's facing a challenge. He is actively dissecting social interaction to better understand them and replicate the success he is beginning to experience with more regularity. And Crafty is moving in the opposite direction - or so it seems.

The older she gets the more glaring the differences between her and her NT pals become. Where two years ago she could just follow the crowd and be 'that quirky, shy girl' now her behaviour is considered odd, rude, strange and inappropriate for her age. Even people who know her and love her see her issues as a behaviour problem and not as Autism. They see Dude and understand his Autism because it's by the book, ordered and to the letter Asperger's. Crafty's Autism is different. It's chaotic, in constant motion with no sense of reason or pattern. Crafty's Autism is like a wave on the beach, you don't see it until it's thundering toward you and crashing against you and then just as you try to grab hold of it, it's gone again. But it will return and when it does, you are just as unprepared for the encounter as you were the last time.

Most days I feel like I'm slogging uphill, through knee-deep mud with her. I'm at a loss when it comes to helping her make sense of her world and helping the world make sense of her. I feel like I can't get in front of this thing, can't control it or explain it. I feel a world of judgement every time she acts out of the norm yet I can't even find the words to define her for myself never mind the words to explain her to the outside world.

I see her struggle to understand, her hurt when she doesn't belong and her confusion when she offends. I see her heartbreak when she is left out and her devastation at being called a 'retard', a 'freak' and a 'loser'. I see the anger at being toyed with by the other girls in her grade and the rage at her own perceived deficiencies. I see her fear. Her overwhelming fear of being alone, of being misunderstood, of being forever out of sync. And I feel my own fear, the very same fear.

But I also see her incredible, undeniable strength. I see her face each new day with courage and optimism. I see her creativity and I marvel at it. I see her whimsy, her humour and her compassion. I see her soft, gooey, loving heart and her deeply loyal soul. I see her mischievous eyes and her sassy smile. I see her, my beautiful, brave, glorious girl and I see hope.

I don't know what Crafty's autism is and I don't really know how to help her. I just know how to love her and how to accept her just as she is.

And, I think, that's the thing she needs the most right now.

Being a typical teenage isn't easy. When you have autism, it can be extra difficult. We need more public awareness about these hurdles as well as compassion towards young people.
~Holly Robinson Peete

PS - This is a brilliant article that outlines the issues girls on The Spectrum have with getting the appropriate support.

Here's also an excellent video featuring a group of girls who have autism talking about autism.

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!**