World Autism Awareness Day- Acceptance begins with understanding


Sydney LIUB  It still happens…5 years since diagnosis and we can still    catch people off guard when we say the word “Autism”.

It’s funny watching someone’s reaction. We get anywhere from an “oh!” surprise/a empathetic “sorry”/ or a completely uncomfortable “I’m not sure what to say so I am going to look at my feet” look.

I get it. I remember the beginning when I had a hard time even saying the word. I didn’t understand it. I tried to. I researched the crap out of it, read blogs, cried at Youtube, felt despair, desperation, frustration and a total sense of loss of control in our life. I shared little with friends and cried a lot with my husband.

We were contemplating and (NOW) laughing about this the other day. How deep and high the roller coaster is of emotions you experience coming to terms with words like Special Needs, Autism and the number of ignorant commentaries that exist throughout your normal day. We realized we had traversed through our own version of the 5 stages of grief. The first 4- Isolation, Anger, Bargaining, Depression simply put…just sucked in terms of understanding Autism.

The last stage, the one I have ached for for these past 5 years, the one that helps me feel like I can finally breathe again, the one that has me realizing that our relationship has survived, the one that has taught us to relax, think of things in a different perspective, laugh more…


That word…means so much in our world.

For us it means calmer tides in managing a life with Autism. It means thinking of where we are as a family not what T might go through in his lifetime.

It means not getting stressed out, horrifically embarrassed or having your eyes burning with tears when publicly someone reacts or says something well…just ignorant.

It means letting go of those inside thoughts hearing other parents talk about a challenging issue with their kids. All the while you are thinking “Ok, but you know your kid is getting invited to go to birthday parties, playing sports, will go on dates, move out of the house, and live comfortably on their own.. and we don’t have a clue if any of that is in our future.”

It means a school system that admits their faults and instead starts striving towards legitimately supporting children with Autism. This won’t be accomplished by putting them in a separate special needs room. This will be accomplished by accepting that the school dynamic has changed, that moving forward there is likely going to be 2-3 children with Autism in each classroom and incorporating education for children on how to view their Autistic peers as different, not less.

As the national average has just shown yet another jump in Autism diagnosis to 1 in 68 recently (30% increase from 2 years ago), ACCEPTANCE is something we need to start focusing on in society as a whole. Whether through a friend, a relative, a neighbour or a classmate the odds are too great for Autism not to be somewhere in your world. With acceptance, first comes the need to understand.

As we celebrate World Autism Awareness Day, take a moment to try to learn what Autism is about. The funny thing…most of us Autism parents are beyond thrilled to actually openly explain the parts we can.

TRY to look at it differently. TAKE TIME to understand.

Just ASK.

Its as easy as a Lightbulb but as profound to change as any
Its as easy as a Lightbulb but as profound a change as any

TODAY is about Lighting it Up Blue around the world for Autism awareness.

Support the momentum that globally we have seen take shape over the last couple of years by taking the time to understand and teach your children about ACCEPTANCE.

Autism Speaks has some great examples of Lighting it up Blue. Head to to register how you are taking action for Autism Awareness. Super proud of Home Depot and Philips who have teamed up to provide a #LIUB blue floodlight or simply stop by and grab a blue lightbulb and put it up in or outside your house today to show your support for Autism Awareness.

Together we can make change.





The Story of Jenna

Jenna came to us as an occasional babysitter when the kids were very young. Back then she was a vivacious and quirky 14 year old, full of spirited energy and often showing up with her best friend with some off the wall on what they could do with the kids for the night. Those early times were quite the adventure as it wouldn’t be abnormal to come home to an arts and crafts hub, mani/pedi spa, bathroom explosion, mud party, dress up dance party and more. Jenna won our kids over with a sparkle in her eye and a smile that is absolutely stunning. She was amazing with T & N and we really felt comfortable having her sit for us.

So comfortable that when the situation arose the next year that we would have to look into full time care at home for the summer before the kids transitioned to a new daycare  (& Jenna was looking for a job) it became a natural fit to hire her as their “nanny”. We had just left a daycare where T was having an absolutely horrible time (see The Importance of Routine and Sensitivity of Sound for children with Autism) . He was undiagnosed at the time and was constantly getting in trouble with the centre for either biting or striking out at kids.

Hindsight being 20/20, the incidents were always happening around the time that free play would occur (when children were given no direction) and when they opened up the room from 20 to 40 kids. T often shows signs of sensory sensitivity and that much noise just became something he couldn’t handle and no routine absolutely threw him into a free fall.

If only we knew that when Jenna took on the job to keep the kids entertained and busy throughout the summer. We went to Scholars Choice. We got lots of crafts. We came up with adventure ideas that Jenna could do. We DIDN’T have a clue that T was Autistic. We just thought he was going through a phase. (I still remember one particular day, T kicked her and had a total meltdown- Jenna’s dad (now close family friends) let me know she was done. She wanted to quit. I was devastated. Fortunately, her dad is a pretty excellent voice of reason and managed to convince her to stick it out.

THANK GOD. The summer ended up being a helluva lot of fun. As I was just starting my business and was flexible in hours, we ended up on a number of adventures hitting up the Zoo, African Lion Safari, Canada’s Wonderland and more. It was a blast and Jenna added such a great dimension to every trip.

The following February we went for a developmental assessment and received the diagnosis of ASD. Jenna got busier as we reached out to her to help cover for the parenting classes we went to at Geneva Centre, the support group meetings we attended, the support group we created, the school meetings and date night. A weekly/bi-weekly effort that became constant in our lives to help maintain our relationship while navigating this new one.

Throughout these years, Jenna has never changed in the way she played and dealt with the kids. She is our steady, consistent support that bar none helped T (& N) stay relaxed at home and gave us the chance to get out and take a deep breath when we needed it. This past year, Jenna decided to do her co-op in an Autism class for her final year of school and she got to know more children with Autism, their particular pieces of the “puzzle” and the wonderful ways so many of these kids use to show they care.

Jenna is now 18 years old, a little quieter, an awful lot more mature and still has that sparkly smile. She is leaving this week for college to take Special Education as her major. Something she shared was inspired in part by being with T all these years. She has gone from babysitter to child-sitter (N cannot STAND Jenna being called a babysitter anymore) to an incredible friend. We’ve had a chance to enjoy an outstanding dance show together and even went skydiving this past June with her mom and another dear friend. We are so sad to see her go but beyond excited for the next chapter in her life.

We will miss you Jenn…Xo


#Autism makes us perfect for the Amazing Race

To all those Autism parents out there, we’ve done it.

We applied to become competitors for the Amazing Race Canada.

Many people have asked us why on earth we would be interested in going on a show that often displays couples at their worst, creates tension in an otherwise happy relationship and puts one through a series of rigorous challenges that pushes you well beyond your comfort zone.

Why? Good question.

Because we believe that living life to its fullest requires going for adventure; pushing yourself to your limits often and being proud of whatever it is you accomplish.

Because if ANYTHING has shown us to keep things in perspective…its Autism; to live in the moment and to stay positive in the face of adversity…It’s Autism. Daily we have found the humour in every situation…in its purest form….through an unfiltered mouth and an innocent mind. If we let things get us down, we wouldn’t be near in fighting form to accomplish this goal…but we have committed to each other to always be talking, always be behind one another, always helping each other get through those crap days.

IF we get selected for the Amazing Race Canada, we would be thrilled. Not just for us. But for the potential of “representing” our parents who are going through the same thing we are and demonstrating JUST how kick ass all us Autism parents are!

Check it out here…(and feel free to share!)


Want to know what daily life is like with Autism?

Like a tigress stalking her prey, she stealthily creeps into our room and maneuvers oh-so quietly to lie in between us, sneaking under the covers without us hardly noticing…until that moment that “thwack!” She hits one of us in the head with her elbow, knee, or best yet a good ol’ kidney kick with the leg.

N is 5 years old and you could say that this is a fairly normal habit, however I believe that the result of her coming into our room for a “cuddle” is often precipitated by her older brother getting up early, heading downstairs to watch Super Mario How-To Videos. That’s right, not “PLAY” Super Mario but he very much enjoys the 80’s style instructional videos in which he acts out what’s happening on screen…usually with a “hi-yah!” Usually loud enough that we’re not going back to sleep.

I started thinking recently of what is different in our world since we have adjusted to having a child with Autism.

For those parents doing as we did and researching how life changes with Autism, here’s a few excerpts from our daily life…


We hear “Do you know Super Mario Galaxy 2??? You can get it at the game store. Can you put that on my home list?” an estimated 20-30 times/day.

T’s need for instant gratitude (patience is too abstract at times) has resulted in a new “list” developing. Your Christmas list, your birthday list (both he understands means waiting for a special date) and now his home list. His home list are those things he wants now. As in let’s go get it RIGHT now, “like now ok?” ..he might be flexible enough for after school but that’s about as far as his home list wait time reaches.


How we communicate

We don’t yell. Not that we really did anyways but T’s response to a raised voice is one that can set him off for the day and create an entire meltdown within seconds. So we laugh. And we try often to look at the humour of a situation cause it is so much about perspective with Autism. Crap can get you down daily (School boards, other kids and the way they treat your kid, how your child can lose it over the most perplexing situation) that we find ourselves reminding each other to keep perspective. We have two children we are completely smitten with, we love each other…nuff said.

Fashion Fairytales

We have a lot of pairs of crisp new jeans. I try…so often cause he looks so flippin’ cute in them but he says they feel like sandpaper. Wow! Nothing that adds to a mom’s guilt than thinking she is putting her kid in sandpaper pants. I had the pleasure of meeting a lovely friend named Vicky Bisson who is with a company called Peekaboo Beans. We spoke about sensory sensitivities in Autistic children and she mentioned many of their clothes are designed to really support sensory sensitivity and their pants/jeans are lined. This could be our answer to getting out of sweatpants! We talked about trying some of their line out to see. If you want to check out Vicky’s page, Click here. Stay tuned as I am sure I will be shouting to the rooftops if this option works.

We get up early

T’s brain is active and often sparks up between the hours of 5-6am. This has led to all sorts of tactics…1) We’ve tried to lie beside him to get him back to sleep 2) I have taken him for a run with me when I am heading out that early 3) We have taught him to get his own cereal 🙂 I like Option 3 a LOT!

The Louis Vuitton bags I have under my eyes are impeccable and I have just come to terms that it will be like this for a long time…

Original source

We get creative

Motivation is often different for T. We recently discovered that daring him to prove us wrong when it comes to doing his homework makes him laugh and very proud of his accomplishment. Trying to explain to him that skating away from the play during hockey wasn’t good finally connected when we talked about the fact that he wasn’t just quitting himself but quitting on his team. A key focus for us is simply that its REALLY important to stay, line up and shake hands with the opposing team at the end of each game. To get the social part of hockey as much as the sport.

This is not what we expected but then what parent is having an experience with parenting exactly as they imagined?

Life is full of surprises, I realize that more and more each day and these are just a few we have encountered so far in our day-to-day with Autism..

Autism has changed HOW we are..

I like looking at a glass half full. I believe everything happens for a reason. I always try to stay positive within a situation.

Wish is partly why I haven’t written in a while. I didn’t want to be a disability parent who just mopes around all over the internet.

6 words.

“There’s Something Wrong with That Kid”.

Those words took down a 250 lb linebacker of a dad and a (we really don’t need to talk about my weight) pretty strong character of a mom.

It was at a hockey practice with our team and the other team we played earlier in the day. They didn’t know T had Autism. My husband was on the ice to work with T and other kids from our team to help them. T was tired and started meandering aimlessly through the practice, having a hard time staying on task and completing the necessary drills. They didn’t realize my husband was T’s dad and after watching a particularly challenging exercise,  one coach made that comment to the other.

Chris, my dear husband, protector of our family, hit a complete crossroads at that point. He was proud of himself later for not slugging the guy right there on the ice and totally disappointed that he didn’t get a chance to punch him in the face. Amazing isn’t it how one phrase can stir up such intense emotion?

Original source: Arham1234 on
Original source: Arham1234 on

You see, it’s starting to show that T is different. Up until this point, we kind of flew under the radar. His outbursts of movie content, overly sensitivity when someone yelled (he actually told a hockey mom once that she needed to stop yelling at her son and that made him “VERY angry” – clenched fists and all), kissing and hugging (inappropriately) friends, parent of friends, teachers, daycare providers and his speech pathologist kind of came off as endearing and young. So much so that we were often asked if we were “sure” that T had a diagnosis of ASD.

In some ways, he is doing a 1,000 X better in terms of social. The new WiiU he got for Christmas has allowed him to engage with his friends in something that he loves to do and is proficient at so that he can provide advice to his friends and find a way for them to play together and on the same team. But he is also starting to demonstrate those tell-tale signs of Autism- he doesn’t connect with how loud he is, can’t quite gain control of physical responses and often “over does it” when excited or stimulated, he gets very upset if you get angry with anything (most recently it was a friend’s dog who he adores that was getting into trouble for eating off the table), and his friends are noticing his repetition, nonsensical statements and lack of interest in common games typical of a 6-year-old.

On the bright side, he doesn’t lie, has a laugh that is so pure and honest, you want to bottle it up and save it, and his empathy is such that he spent an entire period of hockey making sure that everyone was ok who had fallen down.

This is yet another phase we are learning about on this journey and what we have recently discovered is that it doesn’t define WHO we are but often does define HOW we are.

And part of HOW we are going to be is to always try to stay positive, and overlook the times when people are ignorant in what they say but at the same time are telling the truth. There IS something different about him.

Something awesome.

Thinking positive- ASD


LOVE is what gets you through Autism

There’s not much I like about Autism. 

Trying to understand why T does some of the things he does: where he goes when he disappears:how to help him when he gets really upset: how to make sure he isn’t aggressive with other kids: navigating the school system to try to get him support: the repetitive, obsessive behaviour: ….and let’s not forget the over stimulating, sensory sensitivity that often starts our day off ridonkulously early…

Original source:

I wouldn’t say that I have found the silver lining in why any of this has happened…we have accepted it and we are moving day at a time. Yes there are crap days where I feel depressed and sad and wish this wasn’t our fight but there are also some beautiful days…one which I think, if T DIDN’T have Autism, if he was just like any other boy, would he be doing what he just did?

That is exactly what I thought this morning as he woke up (at a reasonable time for once,not the 5 am since Daylight Savings) came into the living room and cuddled up close. And said what EVERY mom craves to hear from their child…

“Mom, I love you so much”

Original source:

You see, right now, T’s repetitive habit (because they change like the season) is to tell everyone that he loves them so much and he is going to “squish you like a bug” with his face all cute and squished up and then asks for a big, big hug.

I know this came from one of his daycare providers who he absolutely adores and who has a particular bond with T, and who says both of those things to him often.

I’ll take it! and so will my parents, my husband’s mom and every one of our friends who he has now said “I love you so much”.

Because he is a genuine, sweet little guy and when he says it to you….it is so very heartfelt and makes your heart skip a beat out of pure love right back to him.

So as much as at times, this journey can suck (as it does for all parents)…for this moment, I will happily enjoy this aspect of Autism.


Love and Autism

Get down? or Get back on track?: Depression nearly got me

Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of keep going…to keep working towards getting T help in school…

All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.

Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.

As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.

Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??

But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.

It helped. But this morning helped even more.

I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.

I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.

Sometimes we need a little reminder what we’re fighting for

We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.

Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.

I might not be as fast as I was awhile back, but I’m back.

Warning: Acting like you’re 17 can have adverse affects on your health

So I thought I was being wimpy.

We had bought this boat to rediscover the hubs and I’s love for watersports and felt it was that time to get the kids engaged in a whole new different world at the cottage. I grew up waterskiing every weekend and couldn’t WAIT to get back out on skis. So we dropped the boat in on May Long Weekend and I braved the water temp to enjoy one of my favorite feelings of all time..the tug of the boat, the speed, jumping across wakes and going slalom…ahem…wait…did you say slalom?….Did I forget the fact that I haven’t skied in nearly 15 years…??

N and her fave part of summer. Getting thrown in the lake

As I got up on 2 skis, my arrogance  and adventurous nature of youth came careening back into my soul and I somehow forgot that I am living in a 37 year old body and instead felt like I was about 17 again. Not a problem unless that exaggerated sense of competence leads you to believe that you should drop one ski the first time out in said 15 years…so as I come sailing by the dock I think, “I can do this!!”  and promptly loosen out of one of my skis…and then promptly have one of the wickedest falls of my entire waterskiing history. 🙁

I felt a slight ache in the back of my leg but didn’t pay much heed to it until we went tubing later on…crashed (in a fun, “OMG I feel like I’m 17 again”, weeeee kind of way!) and hit the same spot on my leg.

That was May 24 and when I started out running the next week to maintain our training schedule for our next half, I just couldn’t do it. Everything about my leg felt sore and painful. I talked to my physio, went to massage and Active release therapy and nothing was fixing it. I just stopped running. Even walking or sitting in a chair was enough of a trial that I realized I had tweaked it somehow and needed to give it rest.

But here’s the problem with summer…with summer comes fun, food, drinks and parties…missing out on the exercise that counteracts all that fun gains you back the pounds shed over the last year and a bit. We all know it’s a cycle, you are either on the healthy train or you’re off and with this injury I fell off…and how! I ultimately went for an ultrasound on my leg and discovered I have torn my hamstring in two places. What does that mean? 8-12 weeks of recovery and physio to get it back in working order. I am starting to come to terms that the half I had planned is not going to happen but what I NEED to do is get back on the train.

So today I went out for my first run this morning since the week after May Long. I accomplished 2.5km…

At first I thought..2.5k? Yuck! I’m starting all over again. And then I realized..”Hey, I’m starting all over again…if that’s what it takes, that’s what I’ll do as long as I am doing!”

The other thing I realized is that part of why I haven’t been writing on the blog is because running always helped me decompress, sort out my thoughts and decide what I wanted to write about. Without that outlet, I really feel like I have been lost these past two months.

I have bought my ticket and I am getting on the train (I look at it that I was temporarily in the station). The journey feels like it will be longer this time but look forward to what’s next in the adventure.

Magnum, our friends dog getting the most out of the boat

The Summer of New Adventures

I honestly don’t know if summer could get any better. We have had the amazing good fortune of having beautiful weather, incredible friends to hang out with, a cottage to escape to and now a very cool motor boat to start our next chapter in adventures at the lake.

It didn’t start out that way. There was a significant number of times at the start of this year where when we went for a ride , it took an incredible amount of time convincing T to even get in the boat. Then it took a lot to convince him to go faster than a put put pace. My husband and I started looking at each other with a “wow, seriously? Could this be the biggest waste of money we have invested in…ever”. We weren’t sure what to do to get him comfortable with the boat (after all, this is a little man who has an auditory sensitivity to loud noises and we’re asking him to sit in a motor boat for goodness sake!)

All I can say, is that my dear husband gets the most brilliant solution award for this one. I don’t think I give him near enough props for how patient and creative he gets in working with T on challenges/resistance he faces but I am truly impressed with how he handled this one. He made sure T felt like he was in complete control. He talked through what the experience of being on a boat would feel like and then ultimately T would give a thumbs up or thumbs down depending if he felt things were getting a bit fast or not.

It took awhile as T got comfortable and once he was there, we started working on him to think about the 3 person tube we have to go on the back. Same situation, talk it through, start slow, he controls his comfort zone…That started in June and now he loves it when dad goes fast. This is so reflective on what its like every day with #Autism. If you prepare them, talk through what to expect and help them plan for the day. If you don’t give them that framework to understand, more times that not, it’s a disaster.

Just keep talking….

Next up, waterskiing…:)

Simple details can help make the world of difference in prepping a child with ASD

A much needed TIME OUT to keep in the game

Let’s be honest. June knocked the wind out of my sails.

My resolve got knocked down, my heart ached, my dukes down in the fight. This is how it started…

Part 1: An autism conference where I realized how still very far away they are from really understanding Autism, how to treat it, and really concrete ideas on managing through it. But I also felt like my heart had been given hope and crushed at the same time as we learned more about  just how much of a fight this will be in T’s growing up..Abundantly clear thanks to an endearing dialogue between The Thomas’ a mother, Sandy and her 22-year-old son, Dylan as they candidly talked about their perspectives on what it was like growing up with Autism. Bottom line..”it will break your heart, it won’t be easy, but you’ll get through…”

Part 2: A series of “showcased” events (School dance, year-end shows, school field trip) in which it became fairly obvious that people I assumed “got it” were not exactly sure how to treat or address Autism as a normal part of daily life. One instance was the school trip in which I got the impression they thought T would  “dart” …we were on a farm..I volunteered that day but instead of including the two ASD kids in with the regular group and asking us to be active observers, we were kept separate along with the other Autistic boy in class and his mother, keeping the most important challenge of Autism, socialization the missing link on that adventure. Another moment was when he was set to the side at the dance,  that “joining in” to the rest of his class would get him too excited.  The last at a year-end recital for dance (we do Tap with him cause he loves the impact), I couldn’t help but cry because he was actually doing the routine (slower-about a 5 second delay) but he was doing it, and enjoying it and we were so friggin proud! and then…he just checked out…went off to his own planet halfway into the second routine and I started crying for a different reason…I was crying because I just wanted him to come back.. to be part of the moment…to be proud of what he accomplished…to be there.

Part 3: Where we are told that the Toronto District School Board does not have enough funding to provide an SNA (Special Needs Assistant) for T (and many others) next year and that we now need to fight our way up the ladder, become the squeaky wheel, do whatever is necessary to try to facilitate support for our son in the school system.

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared husband that he’s doing ok (as much as we talk, he still has taken on the role of guardian, papa bear to us all). We have amazing friends..but I didn’t realize how amazing until we started talking and they just let me talk…and gently asked questions and reassured me that we were doing everything we could to help T and support his success.

Strength in your relationship will give you the energy you need

And this is how the month ended…My parents came to town and let us get up to the cottage on our own. I sincerely think this saved my bacon. After reading an article in the early days of ASD that quoted parents of special needs were 80% more likely to divorce, I have been a big believer that it is essential to keep your relationship strong in helping manage through Autism. This trip time gave us the chance to regroup, to reconnect, to talk, to laugh and to remember why it was we got married in the first place.

We came home stronger, moving on and ready for July..refreshed and optimistic. We will all have those roller coaster times but this part of the ride I want to stay on for a long time.