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

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

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!****

Beyond Empathy

Empathy is a big deal in the Autism community. People write about it, talk about it and hunt for signs of it in their kids. It is the single most discussed emotion or social piece among parents and professionals in the ASD world. Why? Why is empathy so important?

By definition empathy means the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another. It is the recognition and projection of emotions. It is our ability, as humans, to feel an emotion, identify it, and accept that others also experience the same emotion in similar situations. It's all about relating to each other.

When Dude was little we realized that he didn't know what he was feeling. He could not identify emotions properly within himself so how could we expect him to identify emotions in others? We had to teach him how his inside feelings related to his outward actions. We had to give the feelings names and teach him that 'feeling' is nothing to be afraid of, it's normal ... we all feel.

Once he understood that, he was able to begin to recognize the outward expression of an inside feeling in others. He was able to empathize, but understanding, empathising, was only the beginning of his emotional and social development. He needed to be taught what to do with that emotional recognition, how to respond appropriately to what he was seeing.

We can all recognize when a house is on fire but if we do nothing with that awareness, if we just stand there and watch the house burn, then the awareness in meaningless. Action, or reaction, to the recognition is what brings us together. It's when we see the house is on fire and respond in a meaningful way that we really begin to connect with each other. Empathy or emotional education is the same way. it's what we do with the knowledge that really makes the difference.

The funny thing is, the more time I spend with students, the more I see that empathy is not just an issue with kids on The Spectrum. Somehow the ability to see each other and respond with respect and compassion is just as absent with 'normal' kids as it is with ASD kids, more so even. At least parents of kids on The Spectrum are aware that this is something that needs to be taught to children whereas many parents of neuro typical kids think that empathy is just something they 'pick up' along their life's journey. After walking through the halls of any junior high school, I can tell you that empathy is definitely not something that kids naturally soak up and understand.

Acts of schoolyard aggression and cyber bullying are on the rise, not because kids don't care but because kids don't know how to care. Most kids are dealing with so many thoughts and emotions that go unidentified, and therefore, untreated that they are drowning in their own emotional cesspool, unaware that other people even exist. If they don't know how to give voice to their own emotions in a constructive way there is no hope of them being compassionate toward the emotions of a peer.

Empathy is more than just understanding someone else's perspective. True, meaningful empathy needs to involve us in a purposeful response to the emotion we see in others. It should spur us into action, it should stir within us the desire to offer aid, support and understanding. It should bring us together, break down barriers and differences, it should strengthen the bond of respect. Empathy should, no, empathy can change our world and how we respond to it.

Empathy is the only human superpower - it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke political and social change.
~Elizabeth Thomas

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

The Telling

One of my favourite shows on TV these days is Parenthood. I started watching it because I love Lauren Graham as much as my sister hates her but I keep watching because there is a storyline that I identify with all too well. In the first episode Adam, the oldest adult child of the Braverman family, discovers that his son, Max, has Asperger's Syndrome.

I have watched this story play out over the past season and a half. I have watched the Bravermans meet wacky families, experience and explain Max's meltdowns and struggle to come to terms with what the diagnosis means for their family. Each step the Bravermans have taken I have been there with them, remembering similar times in our own history but last night something happened that was foreign to me.

Max overheard that he has AS and asked what it means. His parents froze, like deer in the headlights, panicking and scrambling for the 'right' answer. This is where they lost me. I have written before about my feelings regarding honesty about Aspergers. To us, right now, its no big deal so I was a little annoyed by how this show that I love portrayed this moment. I was annoyed by the panic and fear on the parents' faces until I thought about The Telling and not the topic.

As parents we all have conversations that we dread having with our kids, most of those conversations revolve around puberty related issue but there are other tough conversations. Anyone who has had to explain to their kids that they are getting a divorce, or that a teenage relative is having a baby or that a loved one has passed away knows that the initial telling leads to questions. Its those follow-up questions, for me at least, that cause me to hesitate when I get to The Telling.

I can control what I am going to say but I can't control what questions the kids are going to ask and for a control freak like me, that stresses me out a little. Their random questions demand thoughtful, age appropriate, honest answers and to come up with those answers on the spur of the moment requires some fast thinking, a cool head and a lot of coffeejuice!

But seriously, we can't let the fear of the follow-up keep us from having the tough conversations because if a kid is asking a grown-up a question then its a question they desperately want answered. I remember plucking up the courage to ask my parents what I knew where tough and uncomfortable questions. It wasn't easy for me and it sure as heck wasn't easy for them but I can't remember one time when I asked a sincere question that they did not answer it.  They took things one question at a time and gave me all the information that I needed to know, no more and no less. And that's what I try to do with our kids now.

I strive to be honest with the kids, if I don't know the answer to a question I say so and either we google it together or I tell them to give me a little time to find the answer and we'll talk again, soon. If they ask something that isn't age appropriate or is beyond what they really need to know, I tell them. I tell them that as a kid, they have the privilege of not having to deal with adult issues and that the answer to this particular question is an adult thing and that when this situation has any impact on their day to day lives then we'll let them know and answer their questions.

I try to remind myself that I am teaching them about life, how to live, how to think, how to respond to the things that happen in the world. Its my responsibility to frame their world, to explain, to answer questions ... to tell.


Pretty much all the honest truth telling in the world is done by children. ~Oliver Wendell

Taking a Shot

This morning, moments after my alarm went off, I flicked on the TV to my favourite morning show and began the arduous task of getting out of bed and getting ready for the day. As I went through my normal routine, I listened to the local news, segments on how to cook a baked potato (seriously) and how to save money for retirement, without really paying attention. And then a story came on that caught my attention. It was a follow-up piece to a story that had aired five years ago.

The original story was about a high school senior, a basketball player, who had set a school record for points scored during a game. The thing that made this story newsworthy on a national level was that it was the last game of the season, and it was the kid's first time on the court. I remember hearing about this story when it first aired and at the time I thought it was a nice, little, feel-good piece but it wasn't until this morning that I heard two things that I had never heard before. Those two little nuggets of information changed my perspective of the story.

I searched Youtube and found this segment that aired five years ago. Can you spot the two things that I missed?

He's autistic and he missed his first shot.

Watching this clip made me a little emotional. I love that the whole school was behind this kid, cheering him on, wishing for his success. Who says kids on the spectrum can't have friends? I love that this kid missed his first shot but instead of pulling him from the game, his coach crossed his fingers and said a prayer. I love that this kid felt confident enough, strong enough in himself, to try a second shot. And I love that he didn't stop the moment he achieved success, he kept going, he kept reaching for the next goal and the next. He didn't stop until the whistle blew and the game was over.
Often times those of us who know, work with or love a kid with extra needs want to give them a chance to 'be normal' but we are afraid of what a failure may do to their 'fragile' self esteem.  We don't want them to have to deal with another disappointment or rejection so we shield them. We decide for them what they can handle, and often we put limitations on them that are unnecessary, limitations that end up suffocating their potential.

The reality is that failure is a part of life and without risking failure we would never know the joy of success. These kids will never know what they are capable of if we don't get out of their way and let them try. Let them be normal, let them experience life as it comes to them.
This kid, Jason McElwain, is now an adult who has published a book about this event in his life, tours around North America raising money for Autism Awareness, is entertaining assistant coaching job offers from several schools and universities and is confident, independent and self-sufficient. He was given the room to try and he succeeded.