Autism Speaks Canada

Twizzles, death spirals, and throw triple-loops – all in the name of autism.

In my role as Executive Director of Autism Speaks Canada, I get to meet a lot of inspiring people. It is the best part of the job.

From the families who walk, cycle and run with us from coast to coast in Canada to help raise funds to support our mission, to the service providers and teachers and aides and support workers who are so dedicated to what they do with our kids. From the rock-star researchers who work so hard to find the missing pieces of the puzzle to the incredible corporate partners who have stepped up big tim -  check that – HUGE TIME for the autism community here in Canada – Toys”R”Us & Babies”R”Us, KRG Children’s Charitable Foundation, Spin Master Ltd., Mega Brands, Home Restaurants, Scotiabank, Tennis Canada, Peoples and Mappins Jewellers – to name just a few.

Let me tell you about two incredible people who have been my inspiration over the past 3 weeks.

Brad May and Anabelle Langlois.

Brad (“Mayday”) May is a Stanley Cup Winning hockey player – a 19-year veteran of the NHL where he was known as an ‘enforcer’ – you know, one of the tough guys who steps in to, well, enforce. Brad was drafted by Buffalo in 1^st round, went 14^th overall in his draft year and played for a number of teams in the NHL including the Anaheim Ducks and the Toronto Maple Leafs.

Anabelle – along with her pairs skating partner – Cody Hay, won Canadian pairs title in 2008 and placed 9^th in Vancouver Olympics and over her wonderful competitive career has finished in top 10 at Worlds six times.

Anabelle is petite, tiny – you might say the complete opposite to Brad the tough guy. Well, looks are deceiving. Despite being maybe 4 foot nothing and maybe 70 pounds soaking wet (a bit of editorial license here) Anabelle is as fierce and as tough and as passionate as hulking hockey  star. Truth be told, Brad is really a big teddy bear (but you didn’t hear that from me!).

In Canada, it could be said that we are a bit hockey-crazy. So, our version of the popular US-based show “Dancing with the Stars” is “Battle of the Blades” where a hockey player is teamed with a figure skater to develop and perform routines with lifts, spins, throw and jumps and win money for their charities. (Not to diminish what Emmitt Smith, Jerry Rice and Donny Osmond have accomplished on DWTS but think of their training and then picture them doing the same thing but on skates.)

Not surprisingly, “Battle” draws over 3 million viewers each week from across Canada. Brad and Anabelle have selected Autism Speaks as their charity, guaranteeing us to win at least $25,000 for just stepping on the ice.

But they are not ones to just step on the ice. They are IN IT TO WIN IT. There is a $100,000 at stake for the winning couple.

So… let’s do the math. $25K guaranteed, $100K possible, 3 million Canadians each week seeing the blue puzzle piece and hearing the word Autism.

To get there, they are working so, so, so hard. I have been lucky enough to see them at practice a few times. Let me tell you, I’m glad it’s them out there and not me.

It is hard. There are falls, bruises, bumps, blood.

But with Brad and Anabelle, there are also lots of laughs and hugs and cheering each other on.

There is a combined twinkle in their eyes that should melt the ice they skate on, and a fierce competitive spirit that will, with the support of the autism community, put them on the winning podium on November 14.

The first skate is this Sunday, September 25 with a 7 hour voting window from 7 PM to 2 AM EST – a Toll-Free phone in vote can be cast as many times as one person can get through by calling 1-877-844-8157. Online, during the 7 hour window, you can also vote by clicking at www.cbc.ca/battle/vote.html every 5 minutes through a special Facebook application.

Voting is restricted to Canadians by phone and on Facebook but we do know that many of our friends in the US and around the world have friends, families, contacts in Canada, so please reach out to them – ask  them to vote!

More information can be found at www.autismspeaks.ca.

 

Last October I had the privilege of running the New York City Marathon for Autism Speaks.

I have always found that the Autism community is, for the most part, a fairly supportive one.  I have never seen the rolling eyes, or heard the disinterested grunts when I tell another member of the Autism community about my little girl Brooke.  Parents of children with Autism simply get it.  Theyunderstand why I am so excited when Brooke calls for my attention to show me something, grabs myhand just to hold it or asks to talk to Grammy on the phone.  These are big, special moments.

I have also found the running community to be a very friendly, supportive one.  Again, it’s a groupthat will listen intently as I go over my training schedule or give a mile by mile account of mystruggles through the Boston Marathon.  They just get it.

What better way to combine two things I feel so passionately about than to run the New York CityMarathon under the Autism Speaks banner.

It was, to say the least, an incredible, uplifting experience.

***

So why run a marathon for Autism Speaks?

New York City was my 5th marathon, but it was the first that I ran representing a charity.

My daughter, Brooke, has autism. She was diagnosed nearly 5 years ago and when my wife and I were told the news, there was very little support out there. In the time since then, the tools andresources available to families with new diagnoses has come a very long way. Part of that is due in large part to the efforts of Autism Speaks.

They have been a tireless advocate of awareness, something both the wife and I strongly believe in.

In an ignorant world, my daughter would have been called a brat, or willful child, or worse, stupid. In an ignorant world she would have been constantly punished for behavior that she is unable to control without assistance. In an ignorant world, my daughter may well have been looked upon with disapproval and judgment from both teachers and peers. Thanks in part to the efforts of AutismSpeaks and charities like it, my daughter does not live in  a world of ignorance. We may not be where we need to be yet, but we are on our way.

With awareness comes understanding which can eventually lead to compassion. I have been amazed how people have responded to my little Brooke once they know what she has to deal with on a dailybasis. Once they understand that a room full of talking children can literally be a painful assault on her ears, or that trying to follow what a teacher is saying in class can be as if you were trying to understand a lecture on economics by a professor who spoke 4 out of 5 words in a language you didn’t understand, or that a simple, repetitive sound that you or I simply block out as white noise becomes an itch that she cannot possibly hope to scratch; once people understand this, their awareness quickly turns to compassion. People start looking out for Brooke because they know that in the end, she is just like any one of us, just a little different on how she perceives the world.

I believe that the more people I can make aware of autism and its effects on both those who have it and their families, the better the world will be when my little girl grows up. The wife and I have, from a very early point, been fairly public about autism, Brooke and our family. Not everyone chooses to“come out” if you will, and I have grown to accept and even understand that. By the same token, I feel that as long as autism is kept in a dark corner, hidden away as something to be ashamed of, then ignorance, fear and cruelty will continue to exist and grow.

Running for awareness.

And so I ran (and will run again!!!) with Autism Speaks.  That November I ran to help push the boundaries of awareness. I talked to anyone who asked about the lows and highs (yes, highs) of having a child on the autism spectrum.  I encouraged people to speak loud and speak proud of their children or themselves.  I reminded parents that no victory is too small to cheer and that no defeat is too large to throw in the towel.

Autism Speaks is a charity I respect and have a passion for. They do so much and work so hard to make the world a better place for my Brooke, for both today and tomorrow. But it’s not just my Brooklet that they are helping. Everyday a new family is devastated with the news that someone in their family, whether they are 3, 13 or 23 years old, has been diagnosed with autism. I have had many friends (too many friends) come to me over the years asking questions and expressing concerns about their own children. With resources like the First 100 Days Kit, these families are now able to find the tools to help ease that initial pain and start moving in a positive direction.

By running YOU can help me help my little Brooke and all the families out there affected by autism.

Much of the funds that Autism Speaks raises goes to research, but a portion of it also goes directly to grants that are reviewed by the parents of children with autism. They make an effort to make sure that the funds they distribute can benefit many of us directly.  Autism Speaks is truly working to make the world a better place both today AND tomorrow.

Maybe you have done the Walk for several years now – well, now it’s time to Run.

***

So how did my race go?

As I stood, shivering in the starting area, I tried to visualize my journey before me.  My plan was to break the race into 5 mile segments.  I knew in my head that no matter how I felt, I could run 5 miles. In my head I told myself the moment I take that first step in each 5 mile segment, I was now down to4+ miles.  I was sure it would work.  My plan was to attempt 37 minute splits.

Although I had never run New York, I tried to imagine myself taking a Gu and a swig of hydration at the designated spots.  I saw myself crossing the finish line in Central Park.  The clock read 3:16, which was fine, because I was about a minute back from the starting line.

After the introductions of the elite runners, the gun went off, and we were OFF! waited for the waveto make it’s way back to corral 12.  I took one last look around for a friend who was supposed to be in the same corral, hoping to find a running partner, but to no avail.  The sea of people began to surge forward and as we crossed the starting line, I hit my watch and we broke into a jog and then a run. My New York City Marathon had officially started.

People had warned me about the mass of humanity that I would be part of.  I thought having run Boston from the very back that I already had a grasp of what that meant.  As I began to climb the Varranzano-Narrows Bridge, I realized just how wrong I was.

The view of people ahead of me and behind me was almost overwhelming.  Reaching the peak of the bridge, I looked out over the water at Manhattan.  Having lived there in the late 90′s, I felt a tinge of sadness.  Even today, almost a decade after 9/11, I still expect to see the Twin Towers standing there. I said a quiet prayer for those who lost their lives and loved ones that day and moved on.

As I passed the first mile marker, I took a look at my watch – 8:14.  A nice, slow start.  Unfortunately the second mile was downhill and gravity did it’s thing.  Coming off the bridge I hit mile 2 in a too fast 6:43.

Too fast! I thought. But then I reconsidered, thinking that I was now on target for sub-7:30 miles.

Shortly thereafter we got our first dose of the crowds.  The cheering was absolutely amazing.  The next 3 miles went quite smoothly.  I hit the 5 mile marker at 36:02…a little ahead of schedule, but I felt good.  Real good!  Too good.

I pulled out a Gu.

***

Now here’s the thing.  I am a huge fan of NRG’s Honey Stingers.  I am convinced that they helped propel me to my BQ (Boston Qualifying time) at the Smuttynose Marathon 5 weeks earlier.  Before traveling down to New York, I decided to defer picking up my Stingers until I got to New York.  I assumed the local running shop would carry my brand.  They did…just not in the original flavor I was looking for.  My choice was banana and chocolate.  I settled on a mix.  But what could go wrong, right?  They were Honey Stingers (Gu’s)!

***

As I passed mile 5, I pulled out my Gu, tore off the top, sucked the the honey and washed it down.

It.

Was.

Awful.

I grimaced and washed it down with another swig of water.

Much better.

That is until a mile later.  At mile 6, it started mildly.  Small tiny waves brushing on the shore.  But with every passing minute, the waves of nausea became bigger and bigger.  They were soon crashing down on me.  I tried to stay focused on putting one foot in front of the other, but I could feel myself starting to fade.  Somewhere in the next mile or so I had to stop at a port-a-potty.  I didn’t feel good.

44 seconds later, I was back on the road.

At mile 8 the three starting groups (for the uninitiated, the New York City Marathon starts in three waves, each wave broken down into three separate starting areas that run their own routes for the first8 miles) came together.  The crowds and runners became more congested.

Mile 10 was coming.  The nausea wasn’t going away, but I knew I needed to take another Gu.  I tried to psych myself up for taking in sugar, but the closer I got to 10, the sicker I felt.  Mile 10 came and went, and I decided to push the Gu off until mile 15.  I took a swig of my water, but even that was now making me sick.  At the next garbage can, I chucked my bottle.  I looked at mile split – 73:35 – that was a 37:33 split.  Despite the urge to hurl for the last 4 miles, I was still on target.

I slowed down a touch, trying to give my body the opportunity to re-group.  After about 10 minutes I started to feel somewhat normal.  No longer feeling green, I pressed a little to make up for lost time. As we crossed the half-way mark I looked at my watch.  1:37:19.  Sub-3:15 pace!!!

Ok!  I can do this!

Just after the half, I spotted a friend.  I ran over, gave her a hug.

Looming in the distance was the Queensboro Bridge.  I took a deep breath.  I was going to take the ascent slowly and let gravity do it’s thing on the back side.  Passing mile 15, I realized that I needed to take in some nutrition.  The very thought of taking a Banana Gu brought back a wave of nausea.  I

decided to wait just a little longer.

I took a look at my watch – 1:52:20 – a 38:45 split.  Still within striking range.

As we began to climb the bridge, I was surprised to hear music.  Led Zepplin’s Kashmir began pounding through my earbuds.  I had somehow forgotten that I was listening to music.  The bands and crowds are so loud along the course that unless you have your music pumped up all the way(something I do NOT advocate), it is completely drowned out.

But on the bridge there were no fans, no bands, no sounds save the quiet pounding of running shoes on the asphalt.  Robert Plant wailed away in my ears.  I couldn’t help but smile.  For some reason, it felt like the perfect song for the moment.  Reaching the peak of the bridge, I forced myself to take another Gu.  The thick honey was so unappetizing to me that after forcing half of it down, I spit out the rest.  My level of nausea kicked right back up.

I had been told that I would hear the cheering in Manhattan long before I came off of the bridge, and Idid.  Momentarily I was uplifted.  Coming off of the bridge, I race over to the crowd and high-fived a number of kids.

The high was good enough to keep me going for a couple of miles, but I knew I was starting to payfor the lack of carbs I was putting in.  At this point I realized I needed to put some kind of sugar intomy body, so I decided to start drinking Gatorade at each water station.

I never drink Gatorade.

Ever.

Through 18 miles I had manage to keep my mile splits under 7:50.  I was still averaging under 7:30 per mile.  Mile 19 came in at 7:57.  I wouldn’t see another 7-handle the rest of the way.  As I entered the Boogie Down Bronx, almost on the nose at mile 20 I nearly doubled over from pain in mystomach.

Stomach cramps?  Really? My lack of drinking Gatorade while training was coming back to haunt me.

I had never suffered from stomach cramps in a race.  These were sharp and painful.  I knew that my game plan had to change.  Even as I had approached mile 20, I had been thinking that a PR was still apossibility despite the ongoing nausea.  I had fought through it for 19 miles.  I knew I could fight through it for another 7.

But this was different.  I went into survival mode.  I just needed to keep moving.  Time was no longer the goal – finishing was.

We weren’t in the Bronx long, quickly returning to Manhattan and Fifth Avenue.  I’m not sure how it is physically possible, but it felt like both going up First Avenue and going down Fifth Avenue were both uphill.  Is that possible?  It sure felt that way.  The stomach cramps weren’t going away, but I felt like I could make it through to the finish…that is until somewhere before mile 22 when I felt a twinge in my quads.

 Deja vu!

My mind flashed to mile 20 of the Manchester City Marathon when my quads froze, leaving me with my legs planted to the ground like tree trunks for 10 minutes, unable to move.

The twinge became more intense.  I could feel both quads tightening up.  This is NOT good! As I passed mile 22 I thought about quitting.

I was in official death-march-mode.

Is it worth trying to get to the end?  I’m nauseous, my stomach has sharp pain and now my quads are seizing up.  Maybe I should walk.  Maybe I should stop.

But something kicked in.  I knew that the Team Up with Autism Speaks cheering section was just a mile away.  Autism Speaks, the families that battle autism every day and all those whohad helped me raise nearly $3,500 had brought me to New York.  I couldn’t let them down.  I looked down at my singlet.  “Run Luau Run” it said right above the Team Up with Autism Speaks logo.  I thought of Brooke.  I thought of my friend Greg and his son.  I thought of my friend Sheila and her son.  I thought of Jersey Jenn and her family….and Judith…andDrama…and Gaby…so many families…

No.  Walking was not a choice.  Stopping was not an option.  I wasn’t running for me.

Each stride brought a shot of pain in each leg.  I looked up to see a sign: Pain is temporary. Pride is forever! followed by Your Feet Hurt Because You’re Kickin’ Ass!!! Two better placed signs I could not have asked for.

I caught the Autism Speaks cheering section by surprise (they were still setting up) and soldiered oninto Central Park.

Now, I love a good set of rolling hills as much as the next guy, BUT after 23+ miles?  Oh my frakking God!!!  The uphills simply brought a more intense pain to my quads, and the moment I began going down the hills, my hamstrings decided to join the party.

Gee! Thanks Hammies!  I’m glad you could make it to the Pain Party!

Up and down.  Up and down.  But as intense as the pain was, I knew I had less than 5K to go.

Somewhere around 24, something made me look left.  There was my sister!  A sight for sore eyes! I ran over to her and gave her a hug.  A big part of me wanted to stop right there and call it quits, but I knew I couldn’t.

A hundred yards later, I spotted my mother-in-law (Grammy) and her husband (Grandpa DD).  I tried to put on a brave face.

I had nothing left.  My body was working on sheer muscle memory.  At this point, my hair could’ve been on fire, and it wouldn’t have mattered.

We exited the Park and ran along Central Park South.  I knew that we needed to go back into the Park at some point, but it felt like it was taking forever.  Finally, as we approached Central Park West, we cut into the Park for the last 400 or so meters.  This was the final test of the New York City Marathon,because this very last portion was painfully uphill.

Really!?!

Usually I have a kick at the end of these races.  Heck, I even had one at Manchester for the last few hundred yards, but on this day I would have to be satisfied with just keeping a steady pace.  There would be no passing people at the very end.  No triumphant sprint across the finish line.

I looked at my watch – 3:26:31.

I mustered a smile.  Despite everything, I had managed my second best marathon time. Ever!

I didn’t hit 3:15.

I didn’t PR.

But I have to say, that in many ways, I am more proud of what I did on that day than of my BQ time at Smuttynose.  New York pushed me past what I thought was my limit.  I could have quit. Heck, maybe I even should have quit, but I didn’t. Because I was running for something greater than me – I was running for my Brooke, I was running for every family that is affected byAutism on a daily basis.

Yes, pain is temporary and pride is forever.

I wandered out through the bag pick up section, briefly checking into medical, probably leaving before I should have, woozy but proud.

I found my family, thanked them for coming.

We made our way back across the park to cheer in other Autism Speaks runners.

So what did I learn in New York? At least four things (though I’m sure others will reveal themselves):

1.  Don’t mess with your nutrition.  Last minute changes to what you put in your body can really mess you up.

2.  Train for the terrain.  Truth is, I spent the summer training on very flat roads in anticipation of theSmuttynose Marathon, which is billed as the flattest marathon in New England.  That was great for Smuttynose as I cruised to a BQ, but not so much for New York with it’s bridges, slow, long climbs and rolling hills in Central Park.

3. Running with someone makes a huge difference. At Smuttynose I was blessed to be able to run with a friend for nearly 15 miles and then with some strangers for another 7 or 8 or so. I ran New York without a partner and I’m pretty sure it didn’t help.

4.  No matter how good you feel, if you’ve been targeting averaging 7:24 per mile, it’s not wise to run a 6:43 in the second mile.

***

The point of all of this is not to scare you from running Toronto for Autism Speaks – it is, in fact, to show you that when you put that singlet on that say Team Up with Autism Speaks, you are given a strength, a resource that you can draw upon to get you through the entire 26.2 miles. Had I not been running with Autism Speaks, I would not have finished.

This is a special post by Anita Helser from team Amber’s Angels. She will be walking in the 4th Annual BC Walk Now for Autism Speaks on September 25.

I walk for my daughter and my team walks in support of both of us and all children like her. We walk with hope that a change will happen, with a belief that we can make a difference, with pride in those who have Autism and to help recover these wonderful Can you imagine living every day with thoughts and ideas to share and the inability to do so? I can’t but I know that my daughter, Amber, can. No child should feel this way.

We walk so that they can live and survive in a world that is chaos to them. We walk so that no parent ever has to hear the words, “Your child has Autism”. We walk so that others can understand and accept these precious children.

I learned something myself at the last walk: that I still needed to be more understanding myself. I had a view that Autism needed to be cured wholly. I gave a speech at the 3rd Vancouver Autism Walk last September and was heckled by a teen with Autism saying why is it bad to have Autism. This got me thinking, a lot. It isn’t bad to have Autism. I do not think any less of my child because she has Autism. I feel that she has taught me so very much because she is Autistic. I would like to see all people afflicted by this neurological disorder live a full and complete life. Find ways to be able to be independent and survive this over stimulating world in which we live.

My fears as a parent are that my child will not be able to have a full life, with friends and independence. I looked at my daughter and realized that she will be just fine. She is a very determined little girl and has a way of just figuring out life so it works for her. We are blessed by this child, who is happy and cares so very much for those around her. The trick is to find the way into her brain to teach/show her ways that will allow her to process things easier, with less stress.

Can you imagine living every day with thoughts and ideas to share and the inability to do so? I can’t but I know that my daughter, Amber, can. No child should feel this way. Can you imagine how difficult it is for these lovely Autistic people to handle all that the world today throws their way? They are over stimulated into overload every day. We are asked a question; we process it quickly and come to an outcome to be achieved. These autistic persons need to process what their environment is, how it is affecting them, the words that they hear, the background noise, their body placement, and then they can get to what the outcome can be. If the lights make noise, the TV is on, they are hot, the floor is slippery, they can overload and it an delay their responses. They need added time to get to where we need them to get to. So we get impatient and ask again or in a different manner which starts the process over for them. How frustrating! They may look just like a typical (whatever that is) person, no tell-tale features or attributes that give away that they can’t process as we do, which adds to difficulty in the “real” world.

If we take a little extra time, slow down our world just a little bit for them, remove some of the stimuli that surround us, imagine how much better we would all communicate and feel: Less stress and less frustration.

These autistic people are our early warning system that too much is happening in our world today that we need to slow down and smell the flowers a bit more. Get away from all the technology for a few minutes each day. It does not need to be cured for those that are gifted with this disorder but understood and accepted. It would be wonderful to prevent this for future children and that should be a goal. But for today, let us embrace it and work with autism to find a way to bridge the gap to the “real” world. If you open your heart to a person with autism and change your expectations, are patient and calm you will find some of the kindest, warmest and most gentle souls that have some of the biggest contributions to make to mankind.

I LOVE A PERSON WITH AUTISM AND I AM SO PROUD OF HER! She is the reason that I walk for Autism.

This is a post from Tanaya and Daniel, parents of Bryce who has autism. They are members of team Bubbles Make Him Smile and will be walking Sunday September 25, 2011 in the BC Walk Now for Autism Speaks.

 Autism is third alphabetically on Wikipedia’s list of childhood diseases and disorders. If I’m being honest with myself, I must admit that I am not aware of Diphtheria, Meningitis, or Rubella. The truth is that among the forty-five childhood diseases and disorders there are only a handful that I would recognize from their symptoms. As a parent, I understand the fact that a majority of the public will learn about Autism only after they are directly affected by it within their own lives, while those who have never been affected by it will not. Autism is a pervasive developmental disorder that affects how a person interacts with their world. Our son, Bryce, was diagnosed with Autism Spectrum Disorder (ASD) just before his third birthday. At the time we knew very little about Autism and to support his development we attended training programs and researched treatment options, becoming more aware every day.

So why is it challenging to raise awareness and acceptance?

Before you understand how we raise Autism awareness and acceptance, start by educating yourself on two prevalent symptoms of Autism. First, Bryce, like many other children with Autism, develops different socially than a neurotypical child. He often has a difficult time interacting constructively, initiating play, and making eye contact and as a result of his frustration, act out upon it. To other parents this behavior can seem awkward and challenging in normal social situations for children, such as birthday parties. It is important to be aware and accept that many children with Autism struggle to develop inter-relationships the same way as neurotypical children. This does not mean that they should be excluded from participation, it simply means that by supporting and facilitating appropriate play between children with Autism and neurotypical children, that they can grow together, develop lasting friendships, and happiness throughout life. Bryce, like many other children with Autism, displays this symptom as loud behavior or tantrums, and is quickly mistaken as a lack of discipline or being rude; ignorance is Autism’s worst enemy. These are not bad or disobedient children; they are children who face challenges every day of their lives with managing sensory issues and need support, not cynicism!

Second, Bryce, like many other children with Autism, struggles with communication, and has been delayed his entire life. This can compound frustration when asking why they are behaving atypically, as they will often ignore you or are unable to communicate the discomfort or conditions that are causing them to respond “inappropriately”. Autism is challenging to raise awareness and acceptance for this very reason; symptoms are often initially reacted toward as a parenting problem, a discipline problem, or a rude and disobedient child. Society must be accepting and compassionate about our children, they must support them. When a child is impacted by cancer, an incredibly heart-breaking disease, they are able to explain the pain, the sickness, and the suffering, and as we should, we develop compassion and understanding and accept and feel inspired by the incredible struggles and challenges they face, and we are saddened. When a child impacted by Autism is unable to explain the pain, the sickness, and the suffering, should we not also be able to develop compassion and understanding and accept and feel inspired by their incredible struggles too?

In March 2010, we created our blog site BubblesMakeHimSmile.com to raise awareness and acceptance for children with Autism, and to raise funds through our Bubbles Make Him Smile Therapy Fund to provide our son, Bryce, with Hyperbaric Oxygen Therapy (HBOT). Even though the idea behind the blog originally started out of a need to raise funds for this costly therapy, the website has since blossomed into an online tool for anyone interested in learning about Autism, treatments, programs and training, as well as providing an insight into the lives and experiences as people who love someone with Autism.

Everyday we are inspired by our son and how he teaches people to value him, his talents, his weaknesses, his strengths, and to appreciate the contributions that he can, and will make, to this world.

Be a hero for Autism, all that we ask in return is your acceptance.

This is a special post by Nicola Mitchell. She is a member of Caleb’s Crew and will be walking Sunday September 25, 2011 at the 4th Annual Walk Now for Autism Speaks.

We first created our team, Caleb’s Crew in 2008 and our first walk had one of the biggest teams out at the Vancouver walk.  The experience was amazing!  Participating in an event where we could feel completely, and I mean completely, relaxed was an experience that had been very rare in our family life.  This is our 3rd consecutive year for the walk.

 It’s been 2 1/2 years now since we received Caleb’s “official” diagnosis (Caleb was just turning 3), although we knew in our hearts for some time before that Caleb had Autism. As difficult as it was back then to hear those words, we feel blessed to have received the diagnosis quickly and begin working on an ABA program for him. There have been many bumps along the way, financial strains and sacrifices by every member of our family. But we are so pleased with Caleb’s progress, he is blossoming into a wonderful little boy (well not so little physically, I’m sure it won’t be too long before he’s taller than me!).

His personality is really starting to shine through – he loves to play pretend and give everyone a character in a story to play. He has gone from only having 2 words at the time of diagnosis to . . . well too many words to count now. This has been quite the journey and it is not over yet, but we are so proud of how hard Caleb works every single day. 

We have good days and bad days, but thankfully the good days mostly outnumber the bad. Things that other parents take for granted often take much planning on our part to go off without a hitch!  Parents of children with Autism have to be prepared for everything. We are blessed to have so many people help in the journey of getting Caleb to where he is today – our ABA team members, past and present, our wonderful family, his awesome school and their equally awesome staff, fantastic volunteers at church and in community programs, and some amazingly faithful prayer warriors – you have all played such a huge part in his growth! We thank you all from the very bottom of our hearts!

We pray daily that the research that is being done will bring solutions to the many puzzling aspects of Autism. We walk to support other families like us, we walk to support the ongoing research to put the pieces of the puzzle together; with each step we are getting closer.

Support Caleb’s Crew by purchasing a beautiful puzzle piece jewelry designed for Caleb’s Crew by Design by Ja9.

This is a guest post from Laurie and Barton, parents of Carter, who has autism, and Lynden. Team Carter with Home Restaurants will walk in the 4^th Annual BC Walk on September .

Carter is our Hero who lives with Autism

Ever since being diagnosed with Autism at the age of two Carter’s life has consisted of a whirlwind of Pediatric/Naturopathic/Specialist appointments, part time pre-school, Occupational Therapy, Speech Therapy, ABA Therapy and most recently Feeding Intervention. All together he spends over 40 hours in an average week working on overcoming some of the disadvantages handed to him.

This may sound normal to many families who live with Autism, but the truth of the matter is that Carter works harder and puts in more hours than many adults. But despite that…or perhaps because of it…Carter is a happy young boy with a rich social life and many of the same interests as his peers.

If you were to knock on our door, and he wasn’t busy in therapy, Carter would greet you with a smile and perhaps, if you were lucky, a big hug. He’d say “allo me” and wave for you to follow him into his home where he would show or tell you, with his limited vocabulary, all about his life.

He would tell you about his morning spent playing with and pestering his older sister, Lynden. He absolutely adores her and wants to be near her at all times. He would pull you the computer to “elp” him figure out a difficult level on his favorite computer game. He would tell you about how that afternoon he was going to his grandparents or “Gramma’s Ouse”. There he would be spoiled and doted on and he’d love every single minute of it. He would recite all his friends, therapists and teachers names and from the glint in his eye and the little smile on his face you would be able to tell who were his favorites. Finally, should he get a little tired or find himself in need of some love and comfort, you would see him seek out the love of his life, “Mommy”. You would see him climb into her embrace, hold her tight, twirl her hair between his fingers and truly be at peace.

An average, or dare I say “typical”, four year old boy enjoys roughhousing with his siblings, playing computer games, socializing with his friends, being spoiled by his grandparents and cuddling with his mommy. Carter is a “typical” 4-year-old boy and that is what makes him so special. That’s what makes him our hero!

We walk for Carter!

This is a post from Edmonon mom Deb Currie about her son and hero, Evan. Deb and her team, Team Evanator, will be walking September 11 in the 4th Annual Edmonton Capital Region Walk Now for Autism Speaks.

Evan is an 11 year old boy with Autism from Edmonton, AB who lives life to its fullest!

When I look up “HERO” in the dictionary, it reads; A person of distinguished courage or ability, admired for their brave deeds and noble qualities.

In Evan’s short 11 years of life, he has displayed and exemplified the utmost courage and ability in the simple tasks he takes on day to day.

His abilities outshine his disability and the courage to never give up and move forward to a new day make me honoured and privileged to be his mom!

Evan has taught me courage and strength, to never give up because giving up has never been an option for him.

He shares with this world the grandest heart, loads of compassion, joy and unconditional love. Every single day his inner strength and determination is a true testament of who he is. Evan knows no difference of who he is and loves himself for who he was created to be.

Every event in our lives which we encounter is absolutely presented to us for a reason, even if it defies our understanding and ego. Evan lives his best life every single day! He could simply chose to be a victim of his disability but rather shines above the obstacles he is faced with through great courage and determination to allow his gifts to all of us shine.

He makes me laugh everyday with his infectious sense of humour!

Although life can be a struggle for him everyday, he is able to find a little bit of good in each day and every person he encounters. No judgement, no conditions, simply good!

If you have the pleasure of meeting Evan, he will make it clear from the beginning that you are his friend. Not through a “hi” or a hand shake but a huge hug that will help you through the remainder of your day!

I truly feel blessed and enriched to be given the gift of having a child with autism. He has taught me patience, kindness, understanding and true unconditional love. 

I Love you Evan…………….No matter what!!!

Mommy   xoxo

 This is a special post written by  Claire Apostolopoulos, a Teacher and mom of a son with ASD. This is Part 2 of the  series to help prepare for the  new school year. 

As a parent of a child with autism and a classroom teacher, I have been asked to give some advice on how to prepare for the coming school year.  Having been on both sides of the coin (anxious about sending my son to school, and anxious about receiving new ASD students into my room), I have prepared a few tips that will hopefully help make your child’s transition a bit easier.

At Home:

If you took photos and made a booklet, try to review them often and speak positively about the pictures, for example: ‘This is your nice, new classroom.  Look at all of the fun things to do!’,  ‘This is Mr. __, your new teacher. He is excited to have you in his class.’

Create a visual schedule of your morning routine.  One of my biggest challenges is trying to get myself ready for work, plus getting breakfast into my 2 boys and getting them dressed and groomed and ready to go.  If your child is able to do this somewhat on their own with a visual aid, it can ease that morning rush.

During the first days of school, see if you can get a copy of your child’s schedule for the week.  This way, you will know when PE days are, as well as library, music and other subjects.  It may be helpful to prepare your child in the morning if you know a less-than-desired subject is on the schedule that day.  My son does not enjoy going to Music class because he is oversensitive to noise.  Knowing Music is every Thursday, we can talk about it in the morning, and what he is going to do in order to make it more bearable (wear his earplugs) and then I follow up when he comes home, asking how it went. 

Visit the school playground before school starts and go over the boundaries of the school grounds.  Many ASD kids are wanderers, so it is important that they know where they can and can not go.  Practice walking from the drop-off area to your child’s classroom door (if it is outside) if you are going to be dropping off your child.  If your child is taking the bus, drive the route a few times so they know how long the ride will take (approximately) and show them where to wait to get on the bus before and after school.

If your child will be changing into gym strip, practice doing this at home in a timely manner so your child doesn’t miss out on gym time.  Making a visual schedule strip ahead of time with photos of the clothing, gym bag (and hooks in the change room from your school visit!) that can be kept in the gym strip bag may help some kids.  Also, practice getting shoes on and off independently.  If laces are too difficult, go with velcro or slip-ons.

Ask for a ‘Back-and-Forth’ communication book so you can let the teacher know if there is something pressing that is affecting your child’s behaviour that morning or another issue that needs attention.  My son’s entire behaviour for the day could be ‘off’ simply because we were out of his favourite cereal that morning.  Likewise, the teacher can let you know successes or challenges of the day that may need following up by you at home.  My son always ‘confesses’ things at bedtime, particularly things that upset him at school, like a child teasing him or crying because of a loud noise in the classroom.  Often he had not told the teacher, so I would write his worries down in our book so she could discuss them with him the next day. He would always feel better after she would set his mind at ease about whatever had occurred. 

Like the ‘Back and Forth’ book, education is a partnership between home and school and in the end, both parties want what’s best for the child.  When parents and educators work together, great things can happen!

I hope you all have a stress-free start to the new school year!

This is a special post written by  Claire Apostolopoulos, a Teacher and mom of a son with ASD. This is Part I of a 2 part series to help prepare for the  new school year. 

As a parent of a child with autism and a classroom teacher, I have been asked to give some advice on how to prepare for the coming school year.  Having been on both sides of the coin (anxious about sending my son to school, and anxious about receiving new ASD students into my room), I have prepared a few tips that will hopefully help make your child’s transition a bit easier.

At School:

Some schools like to prepare their class lists in June of the previous school year.  This helps them know their staffing arrangements and placement of Teaching Assistants.  If your school does this, then it is possible to ask your principal to find out which teacher your child will have next year. 

Setting up a ‘transition’ meeting is a great idea.  This is not an IEP meeting, but could possibly be tacked on to the end of one if you are having one in June anyway.  A transition meeting would involve the current teacher and TA and the future teacher and TA.  Often parents think that last year’s teacher will automatically sit down and fill in the next year’s teacher on all they need to know about your child.  In a perfect world, this would happen.  But, in the busy reality that is June and September as a teacher, it might be a few passing comments, a question asked in the staffroom or a well-intentioned file of tips that may not get read until part way through September when the new teacher is anxiously trying to figure out what is causing a particular problem with your child. 

During the transition meeting, everyone will share strategies, challenges, and other things that will help your child to learn successfully with the new ‘team’.  They may share resources, like visual schedules, or an ‘emotions scale’ that was used the year before and is well-known to your child etc.  Consistency is a wonderful thing!  Even simple things are important to share, such as letting the new teacher know that your child feels less anxious if they can change their shoes 5 minutes before recess to avoid the crowded cloakroom area.  Why let the teacher discover that after your child has a meltdown?  

Also, don’t just focus on the things that trigger negative behaviours.  Often all we teachers see written down in a file are negative things, and that can be very intimidating, so don’t forget to highlight some positives!  You don’t want to scare off the teacher!  Be sure to discuss your child’s personal interests, strengths, goals and positive traits so the teacher has a more well-rounded view.  The teacher may decide to add some books on outer space to their classroom library, if he or she knows that happens to be your child’s ‘intense personal interest.’

If you know that your child has made a social connection with another student, ask the teacher if there is a possibility to keep them together in the next year’s class.  For kids who have difficulty making and maintaining friendships, it will be welcoming for your child to have a familiar friend in their new class and for them to not feel like they have to ‘start all over’ to make a friend.  This is not always possible depending on classroom configurations, but it never hurts to ask!  If it is possible, try to have some playdates with that child over the summer to encourage the friendship to continue. 

It is important to note that your child’s new teacher may have no experience with ASD.  He or she may be feeling anxious about what they need to do to meet your child’s needs.  He or she may have no idea what to expect other than what they have seen stereotyped in movies, and as ASD affects each child differently, it is up to you to let them know how it affects your child.  Do not leave it up to the teacher to read articles and books, because most teachers, as much as they would want to, simply won’t have time.  The reality is, only you can give an accurate description of your child’s needs.  When I came out of university, I had zero education on working with kids with autism.  It wasn’t long before I had a lovely little girl in my K class who introduced me to this complex disorder, well before I had my own son with ASD.  Since then, I have had many, many students on the spectrum, each one with characteristics so unique that no book could possibly describe them in a nutshell. 

The opposite might also be the case.  Your child’s teacher may have a host of knowledge on ASD and have some great ideas that have worked with other ASD kids, so keep an open mind in case there are some new things to try.

After you have met your child’s teacher, try to arrange for your child to go meet his or her new teacher in June.  My son’s TA took him down to visit Mrs. F., (his new Grade 3 teacher) in her classroom a few times during the last week of school.  She did not mind because it was the end of the year, when the focus is less on academics and more on year-end wind down activities.  The first time he visited, he ate his snack in the classroom on an inside day and looked around the room at all of the games and other fun things she had available.  The next day, they sat in on a novel being read aloud.  On the last visit, they watched part of a movie being shown as a class treat.  This really made him feel more comfortable with Mrs. F., because he felt he knew her and he was familiar with her room.  It also let her have a chance to see him in the classroom setting, and see what some of his needs might be.  Because his new classroom is in a different area of the school, he and his TA also had to visit the bathroom in this wing to test out the volume of the hot air dryers and the loudness of the ‘flush’.  They started using those bathrooms for the last week of school, and by the last day, he was fine with them. 

If you are able to meet before school, whether in June or end of summer, try taking along a camera.  Ask if you can take a photograph of your child’s teacher, future TA, new classroom, new hallway, new outside door (if they line-up outside before entering), new bathroom, gym, computer lab etc.  I find using iPhoto to make a simple mini-book (this is my new classroom, this is my new teacher, Mr/Mrs. ___ etc.)  may make some of these things seem more familiar in September and might help ease some of the anxiety your child could be feeling.

If it is not possible to meet your child’s teacher in June, try for the week before classes start.  It is definitely not the case with everyone, but most teachers I know go into the building at some point the week before in order to get their classroom ready.  Secretaries and administrators are also there, so you can call down and see if your child’s teacher is in the school and is willing to meet ( at some point during the week) with you and your child for a few minutes.  They may be able to provide you with the teacher’s email so you can send a message to ask for a brief meeting if they are not in the building.  If you explain that this will lessen the child’s anxiety, many teachers would be happy to meet with you if time permits.  But, if your teacher is in Mexico on the beach, enjoying every last precious moment of summer, you’re probably out of luck! 

If your child is going to a new school, phone the office the week before and ask for a quick tour with your child.  Check out the library, their classroom (if possible) the computer lab, gym, change rooms, bathrooms and playground. Don’t forget to take pictures to make a booklet!  Ask them about their PA system.  Does it make a loud noise before someone speaks?  How loud are the bells for recess and lunch?  Are there other times during the day that a bell goes to signal a transition?  Ask if they will test the system with your child there.  This will help you to see how he/she will respond and help you plan appropriate behavioural strategies, like a social story or role playing, to prepare for this at home.  Also, how much time is given for the eating period?  Many of our ASD kids have difficulties with eating, and may not finish during the time frame allowed.  Are children forced to stay inside (and miss playtime) if they don’t finish?  This could be detrimental if you are working on social skills and your child needs that outside time.  Be sure to clarify your feelings about that with your child’s teacher so you are on the same page.  Can children take some of what they have not finished outside with them, or can they be given a bit of time later to eat if they are still hungry?  My son’s most recent teacher allowed all of her students to eat a bit more during their quiet reading time after lunch, which was great for him, as he could never finish during the standard time frame.

The Rogers Cup presented by National Bank women’s WTA tennis tournament (a US Open Series Event) is used by many top players as a lead-in to the US Open in early September. Women’s and Men’s draws alter between Montreal and Toronto with 2011 being the first year that both events were held simultaneously during the same week. This year, Toronto played host to the Women’s event and Autism Speaks Canada was selected as the profile charity – only the second, non-tennis related charity to have this opportunity in the history of the event.

The Aces for Autism competition ran all week with $50 being donated to Autism Speaks Canada every time one of the players hit an ace. Stats are still being tallied but we hope to hit our goal of $20,000! Luckily, Serena Williams was on her game and hitting her serves hard all the way through the final!

The fun started on qualifying weekend August 6/7 with the Free Family Weekend sponsored by Spin Master – one of Autism Speaks Canada’s incredible corporate partners. Spin Master provided tons of free samples and prize packs at various skills competitions. Fans had free entrance to the grounds and were treated to some impressive tennis and a plethora of on-site festivities. Activities on both days included a scavenger hunt, roving entertainment, including jugglers, face painters, unicyclists, air guitar contests – and tennis too – with target practice for all those wanting to pick up a racquet and win great prizes courtesy of Spin Master.

At the Autism Speaks Canada interactive display area on-site all week, BDO-Ad Council eye contact installation was activated, allowing visitors to see how difficult it is to communicate, and make eye contact, with children with autism. Additionally, Autism Speaks hosted a Spin Master Moon Dough play area, and ran a contest to win 1 of 20 autographed pictures of Maria Sharapova. Spin Master provided an incredible basket of toys valued at over $500 that was used to encourage fans to sign up for information on Autism Speaks and the early warning signs of autism.

The highlight of the week was Autism Speaks Canada Awareness Day on Tuesday August 9th. The monsoon-like rain that fell that morning did not dampen the spirits of the over 500 women in attendance at the Ladies Day breakfast where Suzanne Lanthier addressed the crowd about the growing national health crisis of autism.

Throughout the matinee and evening sessions, as visitors entered the grounds, they were greeted by Autism Speaks Super Heroes who handed out Autism Speaks backpacks. Video PSA’s and announcements were made throughout the day. Nina and Larry Andrade along with their 4 year old son, Luke and Grandpa Nino – one of our top walk teams from the Toronto Walk – participated in the official coin toss before the evening centre court match-up between Serena Williams and Alona Bondarenko match on Centre Court.

“The tennis community is really a fantastic one to spread the word about autism and the issues that families face,” Suzanne Lanthier said. “From grassroots clubs across Canada to the high performing athletes, like Maria Sharapova, who have lent their names to further awareness about autism – we know that step by step, ace by ace, game by game and set by set, we will find the missing pieces of the autism puzzle.”

Sincere gratitude to Tennis Canada and the volunteers at the Rogers Cup, Spin Master and Autism Speaks Canada Board member Anton Rabie, and Maria Sharapova for their support.

More photos can be seen on our Facebook Site at: http://www.facebook.com/media/set/?set=a.10150279520203585.340493.85380868584