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

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.

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.

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.
~Unknown

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!**

50 Shades of Blue

Today is World Autism Awareness Day!

Truth be told, everyday seems like world autism awareness day in our house because everyday our world revolves around the awareness of the needs our kids with Autism have. But today we celebrate. Today we love all that Autism has brought to our world. Today we are loud and proud that, in our world, Autism is not a disability but a different ability. That's our world.

When I talk with people about Autism I usually hear one of two stereotypes. Either the image of Sheldon from Big Bang Theory, a socially awkward genius, comes to mind or I hear stories about how someone had an unpleasant experience in a restaurant or movie theatre because of a non-verbal yet extremely disruptive social misfit. While both can be true of people with Autism there are a million shades of blue in between and that's where most people living with Autism reside.

Autism, in all its forms, is a spectrum disorder, meaning that there is a large umbrella that covers a variety of symptoms and characteristics. No two people with Autism are the same ... just as no two people are the same. What is true for Dude rarely applies to Crafty but they both are 'on The Spectrum.' And while Dude and his best buddy Kent both have Asperger's Syndrome, both have excellent memories and both love Lego they couldn't be more different in other ways.

I think that today, of all days, as we celebrate people with Autism and all that they are, we need to understand that before the disorder, before the symptoms and challenges, before the stereotypes that they are above all else, individuals. Each person with Autism is a person. They are more than surface behaviour, quirks and ticks. Each person with Autism has gifts, talent and abilities. They have the capacity to love and be loved. They have emotions and feelings, even if they can't always express them appropriately. They have beauty and light and life. They have endless potential.

This video shows some of the challenges, hope and diversity of people with Autism ...

Blue is the traditional colour for Autism Awareness and today, World Autism Awareness Day, people across the globe are donning the blue in support of people with Autism and so are we.

Dude has been having a rough year at school. He has been the target of bullies because of his 'disability' and there are days that he feels worthless and hopeless. We, as a family, are working to help him see the positives, to work towards success and to surround him with people who respect and value him. In an effort to lift his spirits today I'm asking people to take a picture of themselves, in blue, and post it to Twitter or Instagram with the tag #BlueforGavin. Its my plan to show him the pictures when he get home from school today so that he can see that he, and kids like him, have value and are loved and respected, too.

Thanks!

What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.
~Temple Grandin

Crime; Boy, I Don't Know.

I could home school. Or maybe we could look at private school? No, homeschooling would be better. Maybe we should move? To the neighbouring town? Back to the city? Out of province? Out of country???

This has been the spinning top in the back of my mind for the last week. I'm not sure what the right answer is but right now, the way things are, the current set up isn't working. As things are, I'm sending my kid into a hostile atmosphere with a gaping wound. He is in so much pain that even when people accidentally touch his 'wound' or intentionally touch it to treat it he lashes out. And don't even get me started on the ones who inflicted the wound in the first place.

Dude has had one heck of a year so far and he just can't seem to catch a break anywhere. The year started off a little rocky. Mr. Awesome and I had concerns about his program and classroom right from the start of the year. Then, two months into the year The Incident happened (can't get into it for a number of reasons but suffice it to say, those who know the details can't believe the year we've had!) and we had Dude transferred out of his homeroom.

In the midst of the upset that comes from taking a kid with Asperger's, who thrives on routine, hates change and can't understand social subtleties, and switching classrooms, peers, routines and teachers on him, he was/is dealing with being a target of some very malicious behaviour. So, what we have now is a boy who is confused, angry, hurt and full of distrust walking through the halls of a middle school (which is not the most nurturing atmosphere at the best of times. Seriously, how warm and fuzzy was your grade seven experience?) totally on edge and freaking out on people in a huge way for what seems a minor offence.

I've had a total of nine hours of conversation, since Monday, with different administrators in our school and school division about Dude, the school culture, school division policy on bullying and how it actually plays out day to day. We've talked big picture and we've talked minute detail.

The West Wing is one of my all time favourite shows (no, this isn't a rabbit I'm chasing, this ties in, I promise). In one episode President Bartlett is talking to his political opponent. Bartlett is informing his opponent of the murder of a secret service agent in a violent gun attack. His opponent's reply? "Crime. Boy, I don't know." Bartlett looks at the guy like he's on crack and then sets out to annihilate him in the election.

During my conversations this week and for the past two and a half years I've been working with the schools in my area, I've had a lot of "Crime. Boy, I don't know" moments. As adults, we sit around and lament about the state of our kids, of our schools and of our communities but we don't actually do anything about it. Or if we do try to do something, its not enough and falls short of real change.

I'm tired of lamenting. I'm tired of talking and frankly, I'm afraid of what will happen in our schools, in our community, if things continue this way. Suicide? School shooting? Who knows, but it shouldn't have to get to that before we, the adults, set a new course for our kids.

Now, before you think I live in a war zone and my kids' schools are hotbeds of violent activity, you should know that I live in a beautiful small city with schools that are filled with caring and committed staff and compassionate and connected students. There is a lot of good, a lot to be celebrated. But there is also  a lot of room for improvement. We need to do better for our kids, we need to require more.

We can't wail and bemoan the lack of moral fibre in our kids and then go on our way. Illuminating the problem isn't enough. We have to do more.

So I am. I am going to do more. To be more. To expect more.

I promise because, "Crime. Boy, I don't know," is not an answer.

Knowing what's right doesn't mean much unless you do what's right.
~Theodore Roosevelt 

Aware!

Yesterday was World Autism Awareness Day ... or something like that. It was kind of cool to see Facebook and Twitter light up with blue puzzle pieces and stories of exceptional people, thriving though on The Spectrum. Hearing all those success stories made me a little nostalgic and I started thinking about the journey we've been on with our kids; this crazy ride called Autism.

I have written before about how chaotic and stressful our life was during those early years of Autism and how much Dude has grown and matured but it still amazes me. I am in awe of how much he's learned and how independent he is getting. We hear often from his team at the school about how good he is at speaking up for himself and communicating his needs. The strategies we have spent years teaching him are becoming second nature to him.

We are also seeing how his Asperger focus is enabling him to excel in certain areas of his life. His obsession with Lego and building is turning into a real skill of understanding balance, perspective and basic engineering principles as he constructions towers, buildings and structures in our basement. Even his sensory sensitivity, which was once a huge obstacle to every day living, has steered him towards activities that he he seems to have a natural ability in, like swimming, curling and drumming. His love for science drives him to discover how our planet works, how things like light and sound travel and how the ocean affects all life. His mind is an amazing thing.

What I also find amazing is the friends that are emerging in his life. Making friends has always been a bit of a rocky road but recently there have been these wonderful, open minded and accepting kids who have welcomed Dude as one of their own. They accept his quirks, try to guide him through some of his awkwardness and understand his 'rudeness' is just the truth as he sees it. They praise his talents and engage him in conversation about his interests. They also have taught him that he needs to be a friend if he wants to have a friend, so he asks about them and gets excited for their successes.

When I look at my beautiful twelve year old boy I am aware that we have come a long way. I am also aware that we still have a fair stretch to go. I am aware that people are amazing and that Asperger's doesn't have to limiting, it can be a gift.

Here's a video about an extremely talented surfer who found his normal on top of the waves ...

"I see people with Asperger's syndrome as a bright thread in the rich tapestry of life"

- Tony Attwood.

A Regular Kid?

I often joke about the need to teach Dude everything he should know to become more independent because he's not living with me for the rest of his life but it's true ... and a little scary for me. I love seeing him grow and learn and do things for himself. I love seeing his confidence increase and his anxiety decrease yet every time he takes a new step towards independence my heart lurches in my chest and my mind is flooded with all of the what ifs.

What if it's too loud, too busy or too bright and he gets disorientated? What if he gets overwhelmed and freaks out and no one is there to help him? What if kids start joking around and he misunderstands and gets upset? What if he says something rude or condescending and offends his friends? What if the kids he's with start making fun of him? What if someone makes fun of his hair? What if someone starts playing a Justin Bieber song?  What if, what if what if?

We have survived on what if ... they are what has got us this far. My ability to see a situation and predict all possible reactions and outcomes in a split second has kept us moving forward, kept us from melt downs. Being able to see five minutes into the future, to sense the next melt down and move around that trigger is what has made outings into the world possible. It is a sixth sense that most parents of kids on The Spectrum develop and rely on much more than any of their other senses; I know I do ... er ... did.

For the past four years or more we have hoped for normalcy. We set a goal of helping Dude to become as much like other kids as possible and we have worked very hard towards that goal. Every year we see more maturity, understanding and self control on his part. We see him making friends, fitting in, initiating conversations, looking at people when they are talking and managing his emotions and recognizing emotions in others ... just like a regular kid.

So then why does my heart stop when he wants to walk to school with his pals, stay for lunch in the cafeteria and go bike riding with the neighborhood kids? Why does it scare me so much to see him inch towards independence just like a regular 11 year old kid?

Oh yeah, because he's a regular kid and I'm a regular mom and independence and worry go hand in hand sometimes. It's normal.

Be careful what you wish for!

You'll always be different but you don't have to be disabled. You can emerge from disability.
~John Elder Robison

Small Victories

This morning we had Dude at his specialist's for his quarterly check-up. Every three months Dude goes to see his Pediatrician, one who specializes in working with kids on The Spectrum, and she tracks his growth, blood pressure and general development. For the past year she has been concerned that Dude hasn't put on any weight and hasn't grow a centimeter ... today that changed. For the first time since Spring of 2010 Dude's growth arc took an upturn. He grew!

To most moms this wouldn't be a big deal but for us it is. We have spent a year trying special diets, altering his meds and worrying about his development but today we celebrated this small victory. We try to celebrate every small victory because we've learned that a small victory is often the first step toward a great big triumph, to a new level of success.

For instance, most people who meet Dude think he's funny and interesting and can't really 'see' the Autism in him but that hasn't always been the case. I remember one small victory, a Christmas miracle of sorts, that set him on the path to the witty kid he is now.

He was eight years old and we had been muddling through Asperger's for a little more than a year. Our life was vastly better than it had been a year previously, Dude was more calm and easier to talk to and he was beginning to take an interest in the people around him and how to relate to them. We had spent much of the Fall talking about conversation, anecdotes and humor in an effort to help him understand all the pieces that make up the social puzzle called friendship but we weren't sure if Dude was really getting it.

The night of his school's winter concert we saw another small victory, our Christmas miracle that year. A year earlier our time at the concert had ended abruptly with Dude losing it on stage and threatening to kill us before he bolted from the school, into the winter night. This year, he stood on stage with his class, sang and did the actions to every song, made conversation with his teachers afterwards and walked home with the family to have cookies and hot chocolate.

I was basking in the glow of our successful evening as we sat in our living room, chatting and laughing, with my parents, aunt and sister. About half an hour into the conversation Dude came to sit on my lap and whispered in my ear, "They are telling funny stories, right?"

"Yep, they're talking about when Gran and Auntie were little, about funny things that happened with their brothers and sisters," I said.

"If I want to talk I should think of something funny to share, right?" he asked.

"Can you think of something that would fit the conversation?" I asked.

"Give me a minute to think," he replied.

A few minutes of conversation passed, everyone still laughing and sharing funny family anecdotes when Dude tapped my shoulder and winked. He was ready. After my sister finished her story there was a lull in the conversation so I nudged Dude and he began to tell his story. His anecdote perfectly into the conversation and what's more, it as really funny.

As everyone chuckled and congratulated Dude on telling such a great story I fought the tears that were welling up inside me. This was a small thing, something that millions of other kids do all the time but this was a first for Dude. It was the first time he told a funny story that was in sync with the conversation. Although there's no line in the baby book for this sort of thing, its these moments that are written on the hearts of every parent of a kid on The Spectrum. These glimpses of 'normal' give us hope that our quirky kids will grow up and find their place in this world, after all.

Although our victory today was just an inch and pound it gives us hope, hope that maybe his anxiety is decreasing, that he is feeling more secure and more confident. It gives us a glimpse of a future for him where he embraces his differences and celebrates his unique perspective on life without worry of being bullied or isolated. We see the emerging shape of a strong, self assured guy who is relaxed and comfortable in his own skin and feels in control of himself.

Its only a pound and an inch but still, its a pound and an inch!

Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more.

~Louis L'Amour

The Upside of Being Socially Unaware

For all of the trials and challenges kids on The Spectrum have socially there is one really unique and spectacular thing a lot of these special kids have in common, they don't really see the difference between 'celebrities' or 'the popular people' and 'regular' people. To them everyone is the same. We're all just people. To them, everyone deserves to be respected and heard on the basis of who they are ... social standing has nothing to do with anything. That's why, I think, there are so many stories of these kids doing extraordinary things, fearlessly asking for what they desire, because they don't feel the same social constraints that most of us 'normal' people do.

Neuro-typical people (NT, 'normal' folks) tend to put people in a hierarchy of popularity or success. We do it subconsciously most of the time. We meet someone, hear about what they do for a living, see how they are dressed or hear of their accomplishments and we score them. Subsequent people we meet get scored and mentally placed in order. Its this societal order that gives us the jitters when we are interacting with someone 'above' our score or place in the world but since people on the Autism Spectrum don't understand social subtleties, like pecking orders, they can move against the grain, outside of the bonds of what is expected. They can, and do, just look at the individual for who and what they are.

The most remarkable thing about this free-floating socializing is the way people respond to it. Because there is so obviously no guile, ulterior motives or other questionable strings attached to these interactions the requests or invitations of friendship extended to the 'celebrity' is often accepted at face value. Most people see the honest interest and respond in a completely open way.

I have seen and heard stories of these amazing kids being welcomed on to sports teams, movie sets, university research labs and even the White House ... just because they asked. They have seen someone or something that has interested them and they have taken that leap of faith that so many of us would avoid. They have assumed that people are just people and if they are able to say 'yes' they will and if they can't, its nothing personal. There is very little fear of rejection in these moments and it is a magical thing to see.

Admittedly, there is some frustration, heartache and disappointment that goes along with this kind of openness but more times than not I have seen and heard of amazing opportunities open up just because one little kid with Autism asked.

Here are a couple of links to articles and a video that depicts exactly what I'm talking about ... take a minute to read about one of the few perks of being socially unaware!

Did you hear the one about the Autistic kid and Jeff Dunham?

For the Love of the Game

I've shown this video before ... but it never gets old!

There are so many things that I am proud of Dude for doing and being but nothing touches my heart more than when he sees and responds to a person rather than a position or a status. I love how he sees opportunity for friendship and learning in every person he meets and most of all, I love how he honours the unique and special in each of his friends because to him, "we are all just people but we are all so different and I like that about us."

“The essence of our effort to see that every child has a chance must be to assure each an equal opportunity, not to become equal, but to become different - to realize whatever unique potential of body, mind and spirit he or she possesses”



John Fischer quotes

What Doesn't Change

Here's the deal, Crafty was assessed by a doctor a few weeks ago and she is on the Autism Spectrum. Crafty has Asperger's.

There. I've said it. I don't know why but in the days following the assessment and diagnosis I was nervous, scared for her, for me. I was worried that this little word, this diagnosis that I know so well, was going to change things for Crafty.

It's a funny thing, this diagnosis, it changes absolutely nothing about who she is but yet somehow it does. When Dude was diagnosed four years ago it came as a relief, like an answer to the world's most puzzling mystery, "What is wrong with my kid?!" Turns out nothing was wrong with him, he just has Asperger's. With Dude the diagnosis was a direction of travel, it was really no big deal. So why was I having such a tough time processing all of this with Crafty?

All of a sudden, I was worrying about things I've never worried about when it comes to my girl. I worried about her friends, her future, her heart. She seemed more vulnerable, more at risk for hurt. I knew it wasn't true, I knew that she was just as strong and capable as she was before the diagnosis but ... there I was, worried.

In my fretting, I decided to make a list of everything that doesn't change in light of this diagnosis ...

1. She's witty, funny with impeccable timing
2. She is creative, arts & craft-y
3. She is caring
4. She is strong
5. She is loving
6. She is compassionate
7. She is a hard worker
8. She desires to do well all the time
9. She's a little mischievous
10. She worries
11. She has an excellent vocabulary
12. She loves to help
13. She is sensitive
14. She wants to be friendly and have friends
15. She has her own sense of style
16. She's independent
17. She's a reader
18. She has a fantastic laugh
19. Her eyes twinkle when she's hatching a plan
20. She is growing up too fast

My list went on and on ... over one hundred things that don't change because she has Asperger's. I also made a list of the things that do change because of Asperger's

1. We know better how to help her
2. ...

That's about it. When I looked at my two lists I exhaled and found my bearings. Everything's going to be all right. Nothing has changed. I'm not sure what got me worked up in the first place but I guess everyone's allowed a little crazy every now and then ... and some of us more than others! ;-)

Worrying is like a rocking chair, it gives you something to do, but it gets you nowhere. ~Glenn Turner

It's No Big Deal

Every summer since Dude was diagnosed with Asperger's Syndrome we have written a 'book' about what Asperger's is and what it means to him. At first I used it as a tool for him to better understand what this diagnosis meant to him but now we use it as an introduction to new teachers and as a way of marking his development.

Last night, Dude and I sat down to finish off his 2011 book. This year we modelled after an Important Book. I asked him to list off ten things that he felt were important about him. He mentioned his family, friends and pets then he rattled off his favorite school subject, toy, movie and food. Then he added Asperger's and ADHD to his list.

We often talk about Asperger's but we hardly ever discuss ADHD. He knows that's part of the deal with him and he is an active participant in deciding whether medication works for him and how much but we rarely tell other people about it. The few times I have mentioned it I have found very strong opinions tossed back at me. People are very firm about their stance on ADHD being over diagnosed and that medication is an unnecessary and dangerous crutch schools use so they don't have to deal with active kids.

We disagree.

Maybe there is an element of unnecessary diagnosis and medication but for us ADHD is a real thing. Dude has struggled for years with his inability to focus and control his impulses. When he was seven years old he would cry, heart broken, that he had done something impulsively that he didn't really want to do. he would cry and cry and say he wanted to die. That's when, after a long conversation with his specialist, that we decided medication may be appropriate for him.

Under the doctor's supervision and with a lot of feedback from Dude we eventually found the meds and the dosage that works for him. His performance in school and his ability to make and maintain friendship has seen an unbelievable improvement. He feels so much better about himself, more confident and in control, more 'normal'.

Even though we don't make a big deal about ADHD or the medication, like I said, we don't talk about it so I was surprised when he included it in the list of important things. When I asked him if he was sure about adding that section in the book he said he was.

"I have ADHD, its no big deal. I take a pill every day to slow my brain down so I don't feel out of control, no big deal. It's like Asperger's, it's just part of what makes me me. Sometimes I like my fast brain but not when I'm at school or around people I don't know so I take my pill and it helps. No big deal."

I couldn't have been more proud or more in awe of him in that moment. I didn't realize how hung up I was about that part of his diagnosis until then. In my mind I was making a bigger deal of ADHD and the meds than I needed too. I was letting other people's opinions and flippant remarks affect me but Dude hit the nail on the head. Everything he said is true, ADHD and our decision to give him medication to help the part of ADHD that bothers him is just a part of who he is just like Asperger's, Lego, Science and his huge heart.

It's no big deal.

Acceptance is not love. You love a person because he or she has lovable traits, but you accept everybody just because they're alive and human.
~Albert Ellis

Slow Ease into Summer

As I have been lamenting, complaining and bemoaning the heat wave in our part of the country something funny has been happening in our house and those of you who have loved ones from Planet Aspergers will totally get this.

Dude has always had issues with seasonal transitions. When he was wee dressing to go outside in the winter took an hour long negotiation that usually resulted in a WWE wrestling event. His meltdowns got so bad when he was about 5 years old that we looked into moving to a different part of the country that did not experience the same temperature extremes that the prairie provinces do; we were at our wits end and ready to do anything to make life easier!

We stuck it out and as he has matured the transitions between seasons has gone a little more smoothly. We have learned a few tricks along the way that have helped too. For instance, a few years ago I started shuffling his wardrobe as per the season. Anything that was not seasonally appropriate is moved to the top shelves of his closet, far out of reach and we also starting leaving his bedroom window open in the Spring and fall so he could feel the temperature change. Although it took him longer than most kids to move into shorts and t-shirts, he usually got there before the end of June.

Not this year.

Even though the temperatures this week have been in the high 30C range, my Dude is still wearing jeans and long sleeve shirts everyday. No matter how much I remind/nag him about dressing for the temperature he emerges from his room, day after day, ready for the first snowfall of the year. For the first week or so of Summer Break I fought with him to change his clothes but this week I changed my strategy. I have let him be, thinking that once he gets outside and feels the full force of the 30C heat he'll come inside to change. No dice.

This kid rides his bike, has NERF wars and wrestles with the dog in jeans, socks, runners and long sleeve shirts, not to mention his shoulder length ultra thick hair, everyday! While I am hiding in the shade, wearing as little as decency will allow, he is frolicking in the sunshine, dressed for mid October rather than mid July! I just don't get it!

So last night as I was tucking Dude in he commented on how hot it was. Laying there on his bed with him, staring at his closet full of neatly folded t-shirts and shorts, I launched into another conversation about summer clothes. We talked back and forth for a while until I started to get chilly ... then it hit me.

"Dude, when you get dressed in the morning, how do you feel?"

"I feel good."

"I mean are you hot, cold or comfortable?"

"Usually cold."

"And what clothes do you reach for?"

"The warmer ones on the shelf."

"Aren't they too hard to reach?" I asked looking at all the jeans, shirts and sweaters on his top shelf.

He got out of bed, stood beside his closet and easily out his hand on the top of a pile of sweaters, "Nope."

So we took a few minutes to devise a basement-dwelling-tall-kid friendly plan for easy summer dressing. We covered up the winter weight clothes and made them off limits, made a shorts only rule and committed to checking the weather every night before bed to make sure our plan was still appropriate.

 Welcome to Planet Aspergers Lesson #1374.

I base most of my fashion sense on what doesn't itch. ~Gilda Radner

Timing is Everything

The first week of Summer Break is drawing to a close and surprisingly my sanity is still in tact. I miss my 'alone time' already and so do the many projects that are collecting dust. I am finding that Summer Break is the archenemy of MY productivity but I can't complain about how much the kids have accomplished this week. Everyday they have worked diligently on their Summer Smart folders, have tidied their room and kept their zones clean ... mostly. What I can complain, rant, rage and go mental over is the amount of bickering they do!

I'm not sure if its like this in your house but here it has been a constant flow of nattering. They can't spend more than five minutes together without yapping at each other. Seriously, I thought I was going to lose my mind at many points over this week. The only thing that has saved my sanity and their young lives is their wit. All three of these critters have quick minds and impeccable comedic timing.

At different points this week they have each saved each other's lives with a well timed bit of humour. We are used to Crafty's little golden nuggets of wit and Mischief's well told jokes and stories but Dude has, unexpectedly, been the headliner this week.

The other night at dinner the kids were being really rowdy and had horrible table manners. I started lecturing them about how I'd see better manners at the zoo than what was going on at our dinner table. It had been a long day and my nerves were shot. I was pretty annoyed and probably overreacted to the situation. The kids ate in chagrined silence for a few minutes when Dude, seeing the need to break the tension, whipped off his shirt and declared, "I'm a porcupine!" Then he turned around, made a metal on metal sound and stuck out his shoulder blades. I took one look at him and broke out laughing ... and so did the other kids.

Earlier in the week we had a family meeting about our Random Acts of Service Challenge and our plans for the summer. We did some planning and brainstorming for fundraisers and talked to the kids about budgeting for our summer vacation. We gave them a pretty stern talk about 'the gimmes' and how when we put out money for one thing it means we have to take it from somewhere else. We told them that they need to curb their impulsive-buying whines and be thankful for what they have. There were a couple of sour faces in the room but I was surprised when Dude flopped back on the couch and grumbled, "But I wanted it!"

"Wanted what?" I asked.

"The Bunny!" he whined and flopped some more.

"What bunny? We are NOT getting another pet so you can just forg-" I started.

"The bunny, the bunny, oh I want the bunny," he said. Then he stood up and started to do a little wiggle dance and sing 'The Bunny Song' from Veggie Tales. He had us all in hysterics in seconds!

Whenever he breaks out in a Scottish accent or his Golum impression to coerce a laugh or break the tension I marvel at how far this kid has come. I see miracles everyday and I am always amazed. A kid that isn't 'supposed' to pick up on social cues, understand conversational subtleties or empathize is doing it. He is constantly learning, asking questions and figuring things out. He still has his challenges but he never gives up and that whole list of 'won'ts' we were given by the psychologist four years ago is slowly being transformed into 'yes I cans.'

It has taken time and maturity and a lot of consistent effort but Dude is sorting things out and life is not only becoming easier for all of us but more exciting and more 'normal.' Dude is such a gift to us,  and I cannot wait to see what he teaches us next!

At the height of laughter, the universe is flung into a kaleidoscope of new possibilities. ~Jean Houston

Life from the Inside

Sometimes, while I am busy about my work, advocating for Dude I wonder, "Does he even want this?" "When he is an adult will he resent me, this blog and all I have shared about our life and our struggle?"  "Am I really doing what is best for him and not just what is best for kids like him?" I also wonder what he thinks about Autism, what he will think as he gets older. I wonder if he will feel like I have pushed him into being some kind of poster child or spokesperson.

Dude and I often talk about to whom and what we share about our life. He knows I write about him, about us, and meet with other families of kids with needs to help them get what they need from the school system, too. He is aware that I use our life as an example of what to do and what not to do, sometimes. So,every now and then I ask him if he's still okay with me talking about what Autism means to our family and what it specifically means to him, just to be sure. He says he is but I still worry sometimes.

Earlier this year, John Elder Robison, author of Look Me in the Eye and Be Different, and an adult with Autism wrote about his beliefs about Autism. Please take a minute to hop on over to his blog. I found this post, and many of his articles, very insightful. It really is a glimpse into the mind of someone living, and succeeding, with ASD.

Look Me in the Eye ~ Beliefs About Autism

The Things I've Learned Along the Way

Since I’ve entered this contest over at Circle of Moms I thought it would be prudent to poke around there a little and check out what the site has to offer. I was pleasantly surprised to see well organized forums where people are exchanging ideas without malice or condescension. People are open, genuine and respectful of each other. It’s kind of refreshing.


The forums are organized into groups, circles, based on common interests and circumstances. There are circles for military moms, foodie moms, moms of multiples and just about any other grouping or hobby you can imagine. I decided to look for a circle to join, somewhere to get my feet wet and do a little cyber mingling. I skipped over the pagan mom circles (for serious, they are there, too!) and found a couple of groups that are more my speed.

I joined a circle of Mommy Bloggers, Mommy Writers and another one for parents of kids with ASD. I started scrolling through posts and reading questions and comments. About half an hour into this exercise I was floored to discover that I know stuff. I know stuff about ASD! Don’t laugh; it was really a kind of revelation.

For all that we’ve been through, I still think of myself as a newbie at this ASD thing. I’m just a mom, not a university educated professional, what do I know? What I often fail to recognize is that I have had the privilege to work with some very creative educators and attend conferences and read books by some of the foremost experts in this field of study. I have street cred. in ASD because I am on the front lines, I am constantly studying my kid, trying to problem solve with him. I may not be an expert on ASD but I am an expert on my kid.

I guess I think that if I know something that surely everyone else in the world must know it to, but that does not seem to be the case. From reading those posts I can see that so many parents are in over their heads. They don’t even know where to begin to help their kid, they are drowning.

Hopefully this is a bit of a lifeline for someone out there. Here are some of the things I have learned along the way that have made all the difference …

1. Kids on The Spectrum, and a lot of adults with ASD, tend to respond to life out of a place of fear. The world is too bright, too loud and too fast for them. Everything is coming at them a million miles an hour, literally assaulting their senses so they panic. If you understand that they are afraid when they act out then it puts the whole situation in a different light. You wouldn’t punish a toddler for being afraid of the dark by locking them in a dark room; neither should you deal with a fearful kid with ASD by doing the very things they are afraid of.

2. Just because these kids cannot express emotion and often have difficulty recognizing emotion in others does not mean that they don’t have feelings. People of The Spectrum feel very deeply, they are happy, sad, angry, afraid, lonely and best of all, they love. Their outward expression of these emotions may look a little different from the norm but don’t, for one minute, dismiss the depth with which these kids feel.

3. For high functioning kids like Dude, the more straight forward information they have the better they are able to cope with life. We have found that having frank conversations where we lay everything out for Dude has saved us a world of headaches and stress. Information is power, that’s true, but information is also the biggest enemy of fear and confusion. Dude knows he has Aspergers, he knows what that means to him and he knows that he is normal, just a different kind of normal.

Most of all, remember that you child is a gift, has gifts and is here, on this planet, at this time for a purpose. He is not damaged goods, this is not something that is happening to you … this is just another of life’s many hurdles that you have to jump over. Jump, keep jumping … every leap gets you closer to unlocking more of the treasure that is your child.

****Please remember to head on over Circle of Moms and click on Vote for Random! Its the thumbs up button on the upper right hand side ... you can vote once a day every day until June 8. Thanks!****

Asperger's Speaks ... for Itself

While I was wasting time on Youtube, I found this video. It's written and produced by a group of kids from the UK who have Asperger's. They talk about their brains, diagnosis and their perception of the world in their own words. I love the creativity and ingenuity displayed throughout this video.

The video speaks for itself so I'm going to stop talking now ... watch, enjoy and understand.

You'll always be different but you don't have to be disabled. You can emerge from disability.

~John Elder Robison, author and adult thriving with Asperger's

Making Friends... Just Like Every Other Kid

Recently, I succumbed to the arm twisting of my sister and started watching The Big Bang Theory. I didn't have aything against this show specifically, I'm just not a fan of sitcoms or comedies. When people ask why, I say that I don't like to laugh but that's not true. I am just easily bored. Most comedies don't have enough meat to the story line to keep my interest but I have to say, Big Bang Theory may be the exception.

So many of Sheldon's quirks are amplified issues that we face with Dude and that in makes the whole premise of the show hilarious to us. His obsessive behaviour, scientific approach to social situations and total oblivion to how his words and actons impact the people around him are all too familiar to our eveyday life but nothing hit closer to home than the Friendship Algorithm scene. Sheldon's flow chart had me in stitches, especially how he got stuck in a loop.

When Dude was about seven years old we sat down and drew a very similar chart to help him understand what it takes to make a friend. We included some conflict management strategies and problem solving tips.We tought we had him covered but he was still hving trouble with friends. After a little digging we discovered that we had not given him a way out, he did not know how to continue in a situation when the other child did not respond in a way we had practiced. He was getting stuck in the loop, panicking and walking away from his friends, leaving them feeling like he didn't like them. Oy!

Thankfully, as he has matured making friends has become easier for him. We still have to remind him to think of the other person's interests, to be flexible in making plans and to respond when his friends talk to him, even if what they are saying is boring to him. We have taught him to initiate conversations appropriatey and we have spent some time talking about how to graciously handle awkward social stuations and what to do if people react in a way he doesn't expect.

He has had some successes and some setbacks in his friendships, just like every other kid his age but I am confident that as he continues to mature he'll find his own way to navigate through this friendship making thing and until then, we'll keep trying to teach him and guide him ... just like every other parent.

"A friend is a person that you meet and you like to do some of the same things but not all of the same things but it is most important to meet a friend who is always kind and will like you no matter what kind of brain you have."

~Dude

Is it Contagious?

I had a hilarious conversation the other day with a wonderful teacher at Dude's school. She is part of the Resource team and a mother of a son on the Autism Spectrum. Her sense of humour, empathy and down to earth approach to dealing with kids, all kids, is so refreshing that I often feel a little tipsy after talking with her. Yes, I think I get a little buzz on from her honesty, optimism and joy. Anyway, the other day she was telling me about her two sons and how the younger one jokes that they are all catching Autism from her older son and I knew exactly what she meant!

There are dozens of things we do everyday that are different than most families. Most of these adjustments began because we realized that its just easier to change how we do things than to watch Dude struggle though his day. I'm not talking major adaptations, just minor tweaks to our routine because although the boy is going to have to learn how to function in neurotypical world there's nothing that says he can't move through life in his own way.

On the surface, people on The Spectrum can appear quirky at best and downright weird at worst. They have their own rhythm to life and do even the most ordinary of tasks in a manner that would never even occur to a neurotypical person to try. Sadly, many times us 'normal' folk try to change these quirky habits so that the person with ASD can fit in. We think we are correcting their behaviour, doing them a favour but most of the time we're not. Making them behave just like everyone else for no other reason than it makes us feel more comfortable is selfish and wrong.

If you talk to a person on The Spectrum and find out the reasoning behind the habit, their way of doing things usually makes perfect sense and is often times much more logical than the norm. I have to tell you that after living with someone on The Autism Spectrum for more than ten years I have to say that I think ASD logic may not be that quirky or weird afterall.

There are tons of times that after a conversation with Dude, I'm not sure which one of us is normal, really. He can explain in detail, and quite persuasively, his point of view. He can give us the why and the how behind his every decision whereas most of us do the things we do, the way we do, because that's the way it's always been done. We couldn't explain our way out of a wet paper bag but we're sure we're right because we're the 'normal' ones. 

So let me ask again, who is the neurologically challenged one? The kid who can tell you why he thinks the way he does, or the hordes of us who mindlessly move through our daily routines?

The point is, I kind of hope ASD logic is contagious because I think it is a gift to move through life knowing, with absolute certainty, why you do what you do.

I see people with Asperger's Syndrome as a bright thread in the rich tapestry of life.
~Tony Attwood