How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Sunday, April 25, 2010

My Crystal Ball and My Checkmark Chart


Spring is bringing new life to Welcome to Normal! No, I am not pregnant. But my crystal ball is revealing many new visitors and topics in the months ahead. On May 1, I’ll be one of over twenty bloggers hosting a Mother’s Day post by Hartley Steiner from her First Things First series at http://www.hartleysboys.com/. Then, over the month of May, I’ll be running my Mother’s Day Interview series with women who parent children on the spectrum and blog beautifully about their experiences. I am genuinely excited to share their stories with you, as I believe they have truly valuable insights – as much in one interview as you’ll find in many books!

Over June, the Dads take a well-deserved turn at the mic. I believe their voices are often missing from the discourse – for a variety of reasons – and my goal with this series is to bring together the perspectives of a group of dads who write about their high-needs children with love, respect, and purpose.

Somewhere in there I also hope to feature my upcoming interview with William Stillman. I cannot tell you how much I’m looking forward to reading his responses to my questions, and sharing them with you.

And in between all these inteviews I’m looking forward to a guest post from one of my followers, Island Mom, about a therapeutic option she’s had great success with.

But what’s been occupying a lot of my behind-the-scenes blogging time lately, is my research for a series I’m planning, called The Business of Autism. Researching this series has led me down a lot of interesting – and disturbing – paths that I didn’t anticipate. It’s become somewhat inevitable that this series will involve some controversial topics, but it will never be controversy for its own sake (one of my biggest pet peeves about the media), but rather an opportunity to explore some legitimately difficult questions, many of which I had never before been knowledgeable enough to even know to ask. I’ll be exploring issues like prenatal genetic testing for Autism, why a respected young man with Autism had his nomination to the American National Council on Disability blocked, and why I now believe we have more to fear from Autism Speaks than we do from Autism itself.

Until then, I wanted to share with you an incentive system we implemented for Simon a few months back. It’s about as basic as you can get: one checkmark for each positive step or action. No checkmarks are ever taken away per se, but remarkably poor behaviour will earn you an x, and in the end that cancels out a checkmark. I make sure to reserve the dreaded x for an exceptionally challenging behaviour (like non-stop complaining about the same subject for half an hour, or threatening to hit when he's angry) but never for meltdowns (which are rare these days). The checkmarks are allocated according to some basic categories which are pulled from goals we set for Simon in our daily life. In the photo you’ll see these categories include Helping When Asked, Helping on Your Own, Taking out the Garbage, Carrying In The Groceries, Good School Attitude (we homeschool), Bathroom Responsibilities (adequate wiping, adequate bathing), Nose (to quit the picking habit), etc.

Each checkmark earns him a quarter, and we use this as his allowance. We add up all the checkmarks at the end of the week, minus any x’s, and pay them out. Simon generally heads straight to Ebay for Lego Starwars minifigures at that point.


This system has worked remarkably well for Simon, and I have seen some significant improvements in areas that needed work – areas I couldn’t seem to get him to work on any other way. Nose picking is a good example, also bathroom responsibilities have REALLY improved, particularly in the ... um... boy-parts-washing department.

But the unintended and pleasantly surprising benefit this chart has had, is that it now provides me with an at-a-glance record of important data. Data that helps me with strategies for Simon, and data that reminds me to keep my perspective – one of the greatest challenges in this whole parenting business.

For example, one look at our chart and I can see the areas Simon is really strong in, and areas he’s made improvement in. This does two important things: it helps me recognize what issues I can back off of because he has them under control, and it gives me the Big Picture: a reminder that, despite our many challenges, Simon is one terrific kid. Look at all those checkmarks! On days when I feel like I’m drowning, or days when I find myself harping on what he isn’t doing right, this chart gives me a visual reminder that in the Big Picture, Simon is doing well. And so am I. The gift of perspective is no small one.

Another benefit of this at-a-glance record of behaviours, is that I can track weeks with a high occurrence of the dreaded x. I can see, for example, that Spring Break week (where Simon attended a day camp at a local museum) his x’s were higher. Understandable, but also perhaps an indicator that next time we send him to daycamp we need to increase our sensory work, and perhaps send him with some extra tools for success. Conversely, maybe I need to reconsider handing out x's during particularly stressful weeks for Simon, when he's likely doing the best he can in a new environment.

I can also see that the week we allowed his bedtimes to creep into the later hours, he received significantly more x’s. Time to rewind that bedtime clock. This system allows you to track behavioural responses not just by weeks, but by seasons too. Is your child affected by lack of sunlight in the winter? Allergies in the spring? You’ll see it with this simple chart.

I wasn’t a checkmark nazi; I was liberal with giving them out, and didn’t keep a meticulous score. I kept the chart taped to the wall in our highest-traffic area where most of the checkmarks/x’s would be dished out (great room) and kept a rough tally in my head when I wasn’t near the chart. It’s been very easy, and effective. Here’s hoping it is useful to someone else out there :)

Simon a la Blues Brothers

Wednesday, April 21, 2010

The Power of You and I


Since I never have time to listen to my mp3 player anymore, I decided to pass it along to Simon, especially since I’ve read they can really help kids on the spectrum control their auditory issues. Simon absolutely LOVES it. He dances like he’s competing on Randy Jacksons Dance Crew in our front lawn, showing off for cars that drive by (not too sure I’m really comfy with that particular habit). Right now, his two favourite songs are these:





I don’t think it’s a coincidence that he’s chosen these two songs, each with lyrics that play like universal anthems for autistic kids. Then this evening we were at our local park, conveniently located right across from our house. Simon brought his mp3 player to impress the other kids (a transparent tactic to which he fully admits) and while he was on the swings he asked me to hold it for him. So I listened to that second song, I Believe. And then the strangest thing happened: not a cloud in the sky and yet a big ol’ puddle appeared out of nowhere. Climate change? Nope. It was the old mom-turns-into-mushball phenomenon. Without warning, I felt the tears stinging my eyes as I listened to Nikki Yanofsky’s lilting voice sing:

sometimes when I feel I’ve had enough
and I feel like giving up
you willed me to be all I can be
now nothing can stop me

It was filling my ears – I couldn’t hear the traffic, the other kids playing, couldn’t hear Simon or his little brother Seth who was swinging wildly in a baby swing beside him. All I could hear was the song…

I believe in the power that comes
From a world brought together as one
I believe together we’ll fly …
I believe in the power of you and I


And all I could see was Simon literally flying through the air on that swing, being pushed to dizzying heights by his Dad, and little Seth synchronized right beside him with his arms outstretched to the world, tiny hands trying to catch the wind as it feathered his golden curls. Both with smiles like half-moons.

We’ll be the change we wish from others
We’ll stand tall for what is right
And in my heart there’ll be no doubt
The arms of the world will come reaching out
And embrace me to be all I can be
Now nothing can stop me


And since I wasn’t teaching Simon math, or making him a visual schedule, or arranging his OT, or playdates for socialization, and I wasn’t giving him his fish oil capsules or blogging about Autism or posting on Asperger discussion boards or reading a parenting book or making gluten free bread for allergic baby Seth or changing his diapers or teaching him ‘car’ and ‘ball’ and ‘dinosaur’ and ‘all done?’ and the baby signs for ‘eat’ and ‘more’ while worrying about his habit of flapping his arms while insisting I don’t care if he’s flapping his arms….. since I wasn’t doing any of those things, and I was just a mom sitting on a park bench watching the two little miracles I’ve made with my life while they played on a swingset.... I let my guard down and without realizing it, I began to cry.

I believe in the power that comes
From a world brought together as one
I believe together we’ll fly
I believe in the power of you and I


Two children swinging happily, the sunset at their backs, without a care in the world. It was the simplest of all possible childhood moments. And in that simplicity lay such an intrinsic and magnificent beauty that, set against the soundtrack flooding my ears, it literally moved me to tears.

I believe in the power of you and I.
I believe in the power…
Of you and I.


Here's to simple. Here's to beauty. Here's to the power of you and I.

Monday, April 19, 2010

William Stillman is Coming to Welcome to Normal!


I am so excited to announce that William Stillman, renowned autism self-advocate, author and speaker, will be coming to my blog for an exclusive interview! William is a sought-after Autism expert, has written some of the most influential and important books on Autism and Aspergers, and has Aspergers himself. Stay tuned for details on when the interview will appear, and please tell everyone you know who might be interested! In the meantime you can read my email to William and his incredibly gracious reply (which I received less than 24 hours after sending my message):

Dear William,

My name is Caitlin Wray, and I'm writing to you from Canada. I'm a mom to the kindest, most sensitive, deep-thinking, knock-knock-joke telling, wants-to-learn-everything-in-the-whole-world-by-the-end-of-the-day 6 year old boy. Simon was diagnosed with SPD and Aspergers last fall, through an assessment process that we began after removing Simon from his public school. Simon endured a crushing and traumatic event in his classroom during his second month of Grade 1. Despite our efforts to convince his teacher that he did not have a "behaviour problem", and our ongoing attempts to convince her that there had to be something else underlying his behaviour, she decided that what Simon needed was a little "positive peer pressure". So, unbeknownst to us, she held a class meeting where Simon sat in the middle of the room while she encouraged each of his classmates to tell him what they didn't like about him. Here is just a small sample of what Simon listened to that day:

You are too loud
You touch too much
You talk too much
You hug too tight
You are annoying
You are weird
I don't like you.

Simon, understandably, refused to return to school after this, and so we began an adventure in homeschooling until we can hopefully find him the school he deserves in the future. I wanted to let you know that during this firestorm of emotions and challenges for our family, your books gave me a sense of peace, hope, and empowerment. Much of my initial research seemed to be telling me we had to 'cure' Simon of his autism, but intuitively I knew that wasn't the right approach for us. I knew that Simon just needed the right accommodations, some understanding, and above all acceptance. Your books helped me maintain the confidence I needed to be an effective and educated advocate for my beautiful, remarkable little boy.
I know you are an incredibly busy man, but if you ever happen to have the time to spare, I would be beyond honoured if you would someday consider a brief interview for my blog www.welcome-to-normal.com.

Thank you again for all that you do. It makes a tremendous difference to families like mine.

Sincerely,
Caitlin Wray
---------------------------------------------------
 
Dear Caitlin, 
 
Thank you for your lovely message. I am so sorry to learn of the humiliation and trauma endured by Simon at the hands of an insensitive and misunderstanding educator. I am gratified to know that my humble writings have been of service to you and your family, and I would be honored to be interviewed for your Web site.

Regards,

William Stillman
Autism Spectrum Self-Advocate, Author, and Consultant
http://www.williamstillman.com/

Saturday, April 17, 2010

Interview for The Gift: A Blog for Sensational Caregivers


Wow, it's been a busy month! Recently I had the pleasure of being interviewed by Chynna Laird for her wonderful blog The Gift: A Blog for Sensational Caregivers. If you'd like to read a bit about my background, my philosophy, and some of our more amusing adventures with Simon, you can check out the interview here. Chynna also puts together an excellent newsletter, full of really fascinating interviews and resources, which you can sign up to receive for FREE via her blog.

Thanks Chynna :)

Just a few weeks until my May Mother's Day interview series begins. I've completed several of the interviews already and I am genuinely excited to share with you the honest, insightful, and uplifting experiences of the women in our series. Stay tuned for more details.

Wednesday, April 14, 2010

The Problem with Pedestals


The other day I was posting a response to a mom on one of my discussion groups. Her son had just been diagnosed with Aspergers, and she was in that initial raw place of dark emotions, doomsday scenarios, devastated dreams. I jumped right in with my ‘supportive’ words about accomplished Aspies (or suspected Aspies). Stephen Spielberg, Thomas Edison, Bill Gates. The list went on, and with each name I typed, I felt a tangible sense of relief. Perhaps she did too.

And maybe this is the kind of emergency injection we need during that initial diagnostic period. When we feel terrified, lost in a fog of questions, fears and nebulous prognoses. Maybe we need those pedestals to look up to initially. But… over time, it’s becoming more clear to me that there are problems with pedestals.

A few weeks back, I went into my workplace (I’ve been off for over a year now on maternity leave) to have lunch with some colleagues. I hadn’t seen any of them since Simon’s diagnosis, but they all knew about it. I really wasn’t anticipating it would be awkward but… it was. I struggled to neatly and succinctly explain my complex feelings about the diagnosis in the short time we had to talk. I found myself saying things in ways that I think misconstrued where we are on our journey, and how I see Simon’s future.

My biggest regret in that conversation is that I tried to lighten up the mood by saying “Oh well, at least Aspergers will help him become an astrophysicist!”. That’s not really what I wanted to say… it didn’t convey what I meant… and I suspect I came across sounding like I was a mother in denial, still clinging to a vision of her son’s future that was no longer attainable.

Now, I don’t see astrophysicist as unattainable for Simon. I have no reason to place any limits on his dreams or abilities. But I also don’t think it’s necessary for Simon to attain some incredibly high level of achievement to validate his worth as a person. And I’m afraid that’s how I came across sounding in my chat with those colleagues. Like I didn’t value Simon unless he ‘used’ his autism to scale one of those pedestals.

And this brings us back to the problem with pedestals. Having only a small handful of autistic people who are highly accomplished (in conventional ways) may be useful to help snap us out of our sense of diagnostic doom, but it’s not useful in the long term for the autistic community. It defines success too narrowly, restricts membership in the club to only those who reach fame or infamy, and treasures the gifts of only those who have found acceptance in a neurotypical world. I’m not sure that moves us forward.

What we really need, is a much broader diversity of role models for the autistic community. Temple Grandin has laid the groundwork for that concept, and I hope we will see many more unlike her in the future. Meaning, many more autistic individuals who represent a different part of the spectrum, a different skill set, a different level or mode of communication. We need to start respecting achievements and gifts that are often far more subtle, but sometimes just as meaningful, as someone who’s won Academy Awards or invented telephones.

As a neurotypical, I grew up with many layers of role models – from teachers in my school, to fashion designers, authors, historical figures, scientists, actors, and activists. Isn't that what all our children deserve?They need more than just a few pedestals to measure themselves against. They deserve to grow up with a rich variety of footsteps to follow in, and a chance to be the one leaving those footsteps for others.
---------------------------------------------

This week, I was honoured to be a guest blogger for Hartley Steiner's Autism Awareness Month series on her blog http://www.hartleysboys.com/. You can read my guest post about the emotional process of accepting an Autism diagnosis here.

Sunday, April 11, 2010

The Days That Amaze


Today had all the earmarks of a catastrophy of epic proportions. Our wee one was celebrating his first birthday with a party – not a massive one, because I’ve learned my lesson about those - but my husband does have a large immediate family, and my closest friends have 3 kids each, so we ended up with about 15 adults and 15 kids. Thirty people. I barely slept last night and woke up with an impending sense of doom.

Planning is key. I made sure Simon got a good sleep, a good breakfast, and a sensory break before the party started. Having friends his age coming, and weather that allowed for outdoor play, relieved a few of my worries about Simon’s ability to cope with that volume of people (and sound) in our house. His friends distracted him from feeling like he needed to share the limelight with Seth, and the outdoors gave him room to move in relative peace. Phase 1: complete.

Halfway through the party and we hadn’t seen anything more than a few cases of shouting at the top of his lungs, which were merely the result of needing to correct his uncles when they foolishly referred to a Star Wars Droid as a “robot”. MAJOR faux pas on their part. Simon didn’t shout because he was angry, he shouted because that’s the only way anyone hears you in a room full of my German inlaws ;)

As I scurried about getting photos of key birthday moments, tidying dirty dishes and wiping icing out of my baby’s eyes, no one noticed my shoe: you know, the other one that you’re always waiting to drop?

Suddenly, a shriek from outside! Ugh! I knew it was only a matter of time. Had I pushed Simon past his breaking point? What would be my strategy now with a houseful of people, many of whom really knew very little about Simon’s sensory challenges? Where could I take him to regulate himself….

What’s this…my husband returns from his scout mission to report it was simply little Ella’s boots that got thrown over the fence during some good-natured boyish foolery between Simon and Ella’s brother. Wow… ok… shoe still teetering

Chips have been munched, cake has been smeared, pop has been guzzled, children are running amok. A meltdown recipe to be sure… but everyone is … smiling and …enjoying themselves… what am I supposed to do now? This is so anti-climactic it almost feels disappointing, in a twisted sort of way…

Then it happens: the back door opens and Ella enters in tears, holding a hand to her reddened cheek. He’s done it now – and just when I was starting to see the light at the end of the party tunnel. Ella says Simon threw a football and it hit her in the face. But wait… I happen to know that Simon has a) a wicked good arm and b) the worst aim you’ve ever seen. There’s not a chance he meant to hit her.

We go outside with Ella to have a chat with Simon, and the gig is up. Simon and Ella’s brother (gotta love those little brothers, eh girls?) concocted a plan to distract her from wanting to play with them. It involved throwing the football to the other side of the yard so she’d go get it, while they exited stage left Snagglepuss style. A misfire with a football was to blame, and a simple apology from Simon clears the air immediately. The party is almost over and Simon is breezing along like a pro. Am I in a parallel dimension somewhere? Do-do-do-do, do-do-do-do, do-do-do-do… twilight zone music plays like a soundtrack in my head.

And it never happened. The shoe that is… it never dropped. We made it to the end of the party – which was scheduled for 2 hours but lasted for 3 – without any significant incidents whatsoever. No meltdowns, no outbursts, no hurt feelings, no (major) tears. No sensory overload. Zero catastrophies. Somebody get me a lottery ticket!

Since the incident at Simon’s school last year, I’ve been keenly aware that I hover a little closer, protect a little more, let go a little less. I’ve been diligently sheltering him from situations where I know, or strongly suspect, he will be socially unsuccessful. And in hindsight, I don’t regret any of those decisions. They were right in the moment. They allowed Simon time to rebuild his confidence, re-establish his sense of self-worth and a belief in his ability to be successful in social interactions that were, admittedly, strategically designed for that very purpose. But I believe those engineered social environments played an important role in setting him up for this monumental success: enjoying himself without a single meltdown at a loud, chaotic, cramped, overwhelming-even-for-me birthday party, that didn’t even involve any gifts for him.

The lesson I learned today is one I seem to encounter time and time again: trust your instincts. If they are telling you it’s time to set up successful, carefully crafted environments for your child, then do it. But when your mama radar says… maybe, just maaayyyybeee my child could handle this crazy place or that chaotic event…. then try it. Today I learned the importance of periodically testing my son’s limits, without habitually pushing him past them.

Today, was a good day.

Wednesday, April 7, 2010

The Disney Effect: Why My Child Will be a Mouseketeer When Pigs Fly

Image from ststours

Oh how do I detest thee Disney, let me count the ways...

As a woman who’s grown up in North America during the second half of the Disney Dynasty, I have a love-hate relationship with this megalithic manufacturer of cultural expectations and disappointments. I could never relate to the Princess pack as a small child. But oh… how I longed to.

Everything is so simple in the Land of Disney. And my childhood could have used a dose of simple. But it never came… I never went to a prom (didn’t really have those in rural Canada), never wore a frilly dress, never got swept off my feet by a handsome prince. I’m less bitter than I am… perplexed. How is it that I actually have a sense of inadequacy because of this? Despite a University degree, a great career, loving husband, magical kids, comfortable lifestyle... How is it possible that I could still, as an intelligent woman, allow myself to feel this way, all on account of a company who’s mascot is a rather tiresome cartoon mouse?

When I think about Disney, I think about unattainable standards, narrowly defined roles, reinforced stereotypes, and generations destined for disappointment. I think about a boat that never rocks, an establishment never challenged. Sure, if you are in the 2% of the population who fits all the requirements to actually be a Disney Princess, I suppose they don't seem so evil. But as harmless as an entertainment company may seem, I believe Disney’s powerful reach extends right to the very heart of our culture. Moreover, I believe it is particularly devastating to a culture that seeks a wide circle of acceptance for neurodiversity.

So what does all this have to do with kids who are markedly different than the ‘norm’ you ask? Well, this thought process all began after I read a post on a discussion group a month or so ago. It was a mother desperately pleading for reasons why her life had gone so wrong, lamenting why she had been given an Autistic child instead of a ‘normal’ one. Her comments paraphrased: ‘I was supposed to be driving my kids to little league or Boy Scouts, instead I’m driving all over to therapy appointments. It wasn’t supposed to be this way.’

Now the problem for me as I read the post was two-fold. First, her child’s diagnosis was not new. It had been in place for several years, so it wasn't an initial raw reaction that was being shared. Second, her child was not far into the spectrum in terms of what is widely referred to as ‘severity’. So at first, I was internally quite indignant at her complaints that destiny had let her down. I wanted to give her a good shake and say this is your destiny! This child is a beautiful soul and you were meant to be his mother; this miracle we call life is about so much more than Little League or Boy Scouts!

And then I did that thing we moms sometimes get brave enough to do… I went to that sometimes dark corner of my spirit where I keep The Truth safely guarded. I opened my mind to how she was feeling, and while I cannot relate to her sentiments at this point in my journey… I allowed myself to understand the roots of her disappointment. And those roots are showing - in places like Disney Land. Now I’m no conspiracy theorist, and I’m not being literal in my blame of the Disney behemoth. But I am being real. Disney is the embodiment of a culture that promulgates standards of ‘normal’ and ‘perfect’ that are completely unattainable for that woman’s autistic child, a culture that so narrowly defined her role as “mother” based on Little League games and Boy Scout meetings, that set her up to envision a life that was based on someone else’s stereotype, and now – the inevitable result: lasting disappointment.

I emphasize lasting because I can’t really imagine any parent not feeling some measure of disappointment when they first receive news of a significant developmental diagnosis. It’s a very specific brand of ‘disappointment’, unique to parenthood. And if we are honest with ourselves, if I am brave enough to share a little of that Truth we all keep somewhere deep inside, I think we need to admit that it comes from expectations which have nothing to do with who our child is, and everything to do with who we envisioned they would be.

Despite our best intentions to love unconditionally from the moment of our child’s conception… we are products of a culture that values princesses and knights in shining armor, Mileys and Mouseketeers. And so, it becomes almost impossible to remain completely untouched by the Disney Effect. Disney, who takes the naturally sweet beauty of human diversity and, deeming it unpalatable, soaks it in artificial colours and flavours until everyone looks like the same brand of lollipop. I like Licorice Allsorts – where are all the Licorice Allsorts??? Would they hire an autistic Mouseketeer? Are stimming and perseverations welcome in the Mickey Mouse Clubhouse? Is Disney a cultural icon that I can imagine embracing and reflecting publicly my son’s neurodiversity? I think Porky Pigs will fly before we see that day.

And so having come to terms with my inner Truth about the cultural expectations I held for my son, and how they had everything to do with my own inadequacies as a mother, and nothing whatsoever to do with his as a child… I return to the mother who was drowning in a lake of lasting disappointments. Allowing that otherwise fleeting sense of disappointment to persevere, to persist, to fester? That’s not the kind of ride I want to spend my life on. That’s where I get off the perpetual merry-go-round of "what ifs" and "why me’s” and head straight for the roller coaster of acceptance, advocacy, passion, and peace.

And maybe, just maybe... if an obnoxious little cartoon rodent can net $35 Billion, then perhaps flying pigs are not such a lost cause after all. 

Simon and a friend visiting a close cousin of the flying pig - ground hogs - at the local Zoo.

Tuesday, April 6, 2010

Burping like an Orca Whale While Contemplating the Birth of God, A Star Wars Easter, and My New Crush


This post is a bit of a potpourri of tid bits I've been saving up. None seem substantial enough to warrant a post on their own, but together they make a nice stew of ideas...
----------------------------------------------------------------
A glimpse into the miracle of the Autistic mind, aka, Simon's battery of questions really fast one after another as we cuddled in bed one night:

What reacts to make you wake up?
How do your ears work?
How do your eyes see?
Are your eyes connected to your brain to send the pictures there?
Is that how our memories work?
So we can see pictures instead of words?
I just burped and it sounded like an orca whale.
What is the definition of the word definition?
Why do they call it a grand finale?
Is it because it’s the end of an alley?
Where was God born?
Goodnight mama.
------------------------------------------------------------------


Easter Traditions

An egg hunt in the yard on Easter morning - fortunately in our yard, actual bunnies leave tell-tale signs in the garden that reinforce Simon's belief that truly, the Easter Bunny is real. I haven't mentioned to Simon that if the @*#&*#$ bunnies don't stop EATING my garden, they may find themselves needing a miracle resurrection themselves.

This year Simon asked for Lego instead of chocolate. I...er....the Easter Bunny was happy to oblige. My favourite tradition though, is one passed down by my mother. She always wrote little rhyming clues that led me to the secret locations of my easter treats. This is something my boys really enjoy.

Oh yeah... we also made Star Wars easter eggs. Seems there isn't a single corner of my existence that is sacred enough to be spared from MORE STAR WARS PARAPHERNALIA!

 
 
 
 
 
 
 
---------------------------------------------------------------
Don't tell my husband, but I'm crushing on William Stillman...
 
I may be 35 years old but I am NOT too mature for a childish crush. Tell me this man is not one of the handsomest you've ever seen:
 
 
This is William Stillman, who many of you may have heard of. He's a well-known author of some really fascinating books on Autism and Aspergers, and has Aspergers himself. The one I first picked up is The Everything Parents Guide to Children with Aspergers Syndrome and it is written with such a tone of inspiration and compassion - yet it's a remarkably technical and practical guide as the title suggests. It's a wonderful juxtaposition of these two realms - the pragmatic and the prosaic. A book that reads like a useful tool - but one that feels light and comfortable in your hands, one that makes you feel like you really CAN take on this job with a happy heart - that's how The Everything Parents Guide feels to me. Stillman went on to publish some works that explore the concept that Autistic people have a more direct connection to the divine, to the spirit of the universe, not despite their neurological differences but because of them. I don't yet know what to make of his hypothesis, but I do respect the voice he's giving to these ideas.

Saturday, April 3, 2010


Here is my second post in honour of World Autism Awareness Day (yesterday, April 2). I decided to buttress the day with two important posts - the first was The Legend Of Smockity Frocks which tells a true and powerful story, still unfolding, of the lessons we have to learn about accepting differences and avoiding judgments. In this second post,  I am so excited to share with you a link to THE BEST AUTISM EXPLANATION EVER IN THE HISTORY OF THE PLANET. Ok, I may not have read every other one out there, but I cannot possibly imagine a better one. Seriously, you HAVE to read this (if you haven't already). MOM-NOS wrote this after an inspirational and magical experience with her autistic son's class. I have already printed off the 'Hairdryer in a Toaster-Brained World' section and shared it with some of Simon's caregivers. Many of us are deterimined to convince MOM-NOS to turn this series into a published book - read it, and you'll see why.

Thank you to MOM-NOS and all the other bloggers who seek to understand and respect autism, while pursuing change in a world that has so much left to learn.

Thursday, April 1, 2010

THE LEGEND OF SMOCKITY FROCKS

My Sweet Simon, smiling through the tears after one of his first
encounters with cruelty at a school function.

While I was busy with hot tea and chicken noodle soup over the Spring Break, the autistm blogosphere was busy being mortified and moved to action by a non-autistic blogger named Smockity Frocks. You may have already heard about this situation. By all indications, it is destined to become a bit of a legend: Smockity is a mother of 7 (if I recall correctly), who apparently has a very popular blog about Christian homeschooling. She recently wrote a post on her blog that was beyond unfortunate: not recognizing the signs of autism in a small child, she mocked and criticized the little girl for her public displays of different-ness at a library. One example of her running commentary: The little girl was flapping her arms (very common neurological stimming response on the spectrum) and Smockity wrote, rather viciously: “The flapping intensified until I thought we all might witness the first recorded occurrence of self-propelled human flight”.

Ouch.

There was plenty more where that came from. She also slammed the girl’s grandmother, not recognizing that the grandmother was using standard behaviour management strategies for kids on the spectrum. Smockity has removed her post but you can read it here.

Even those of you with SPD kids who aren't on the specturm, know that in meltdown mode you feel the eyes of the world on you and your child. Even if this child hadn’t been on the spectrum, I think Smockity’s mockery of the little girl was … well… regrettable to say the least. But surely everyone has been guilty of judging other people’s children at some point in our lives. Which is why to be fair, her initial post was not really the problem. Her initial post was the opportunity.

After a plethora of “you’re sooooo hilarious” comments from many of Smockity’s followers, a few were brave enough to raise the likelihood that this child was on the spectrum. Hand-flapping, toe-walking, social awkwardness, a fixation on one activity, repetitive language. All tell-tale signs for those of us who are familiar with Autism. Now, her venomous tone aside, it’s understandable that she wouldn’t recognize Autistic behaviour when she sees it.

But when some gentle, thoughtful suggestions were made that this child may have been Autistic, Smockity did not respond with Grace. No, she made a most unfortunate choice to turn and run the other way into denial, defensiveness, and dismissal. She lashed out at the people – many parents of autistic children themselves – who were gently trying to help broaden her perspective on neurological differences. Her responses were tinged with the same viciousness that coloured her original post. This – this is where she missed the opportunity.

We have all made poor judgments, we have all made mistakes, we are all guilty of cruelty – intentional or otherwise. But the real test is what you do when someone is courageous enough to hold a mirror up to your perspective – will you avert your eyes and pretend you don’t see how ugly it is? Or will you seize the opportunity to make it into something beautiful?

If Smockity had chosen to seize that opportunity, here is what her next post might have looked like:

You know there are some moments in life when you are forced to recognize your own human weaknesses, to confront your own hypocracies, to admit your mistakes and turn them into a lesson for yourself and others.

This is one of those moments.

In my last post I indulged in a self-gratifying, harshly judgmental, random attack on a little girl and her grandmother who behaved in a way that I was neither accustomed to, nor understood. I saw an opportunity to mock an easy target, to get some easy laughs, to make some unfounded assumptions. I seized that opportunity and now, I need to be accountable for it.

While I had no idea that the child I wrote about may have been on the Autism spectrum, I now have learned that behaviours she displayed may indeed have been a natural part of her neurological differences. Knowing this now, I need to tell you that I feel deeply ashamed of the way I judged her. And in this I have found a timeless lesson that crosses all cultural and religious boundaries: do unto others as you would have them do unto you.

When I am out with my kids, I do not want to be judged by those who don’t know me. I would cringe at the thought that someone would write a blog post mocking my beautiful babies. I broke my own rules in that post, and for that I am truly sorry. But I am determined to turn this mistake into an opportunity to be more aware of people’s differences and to share my awareness with others.

April 2 is World Autism Awareness Day – please help spread awareness of the challenges and gifts that autistic children bring to this world by forwarding this post to your friends, so that we may all learn to judge less, and love more.

In humility and grace,
Smockity

Unfortunately, that’s not what Smockity wrote. This is the post Smockity responded with:

It has come to my attention that my motives are being slandered because of what I meant to be a humorous look at life around me. I do not speak for any group of Christians, homeschoolers, stay at home moms, or anyone else, nor am I interested in defending myself to strangers who believe they can judge my character from one post. (Me: Oh the IRONY) If you are interested in spreading Autism awareness please go to this link (Autism Speaks) to make a donation. I will not be responding to emails or attacks on Twitter, personal blogs, or forums.

And so, despite my initial profound sadness at reading about the Legend Of Smockity Frocks, I now believe that Smockity has inadvertently given us a tremendous blessing: an opportunity to bring World Autism Awareness Day to another more tangible level. The Legend of Smockity Frocks is a powerful story – more powerful than a viral facebook status, more powerful than wearing blue, more powerful even than a simple donation.

The next time I am about to lay judgment, make assumptions, or lash out when in fact the moment offers an opportunity for compassion and understanding, let the Legend of Smockity Frocks remind me of what makes us human… a heart that has more capacity for love than for hatefulness.

She did eventually post an apology… of sorts. You can read that here.

And so I will seize the opportunity to learn from the Legend of Smockity Frocks, and end my post with this:

April 2 is World Autism Awareness Day – please help spread awareness of the challenges and gifts that autistic children bring to this world by forwarding this post to your friends, so that we may all learn to judge less, and love more.

Here are links to other blogs that offer perspectives on the Smockity Frock Affair. Click on the following blogs and scroll down to see their extensive lists of who else is blogging about this issue: