May 23, 2016

Wheels + Sunshine = Joy!

Last weekend was all about wheels!! All 3 kids got new bikes this year... it was a pretty thrilling day all around.

Kaya was first with a new mountain bike. It was a fun new experience to strap it onto the front of the bus, and I must say that the neon green colour is really snazzy.

Just the right fit!
Her face says "why are you forcing me to stand in front of a bus for this??!!"
Liam is the most difficult one to find the right bike for. For Liam motor planning always has been (and always will be) a challenge. Liam has never been able to ride a two wheel bike. I think if he put 100% of his brain and body power into it he could keep the bike upright and maybe even get it moving... but he just can't multitask in that way. Even if he was upright, his mind is too easily distracted. His eyes are drawn to the chain rotating or an interesting vehicle passing by. As soon as his attention is pulled in another direction he would just fall over  - plop! He just can't keep his mind and body synced.

When Liam was 6 years old he received funding from President's Choice Children's Charity for a 3 wheel bike called a Junior Joyrider. It was an awesome trike that served him well for many years - He rode it from ages 6-12.

Liam aged 6 - The day he received the Joyrider.
This year Liam had officially grown out of the Joyrider. Despite 6 years of riding around the bike still had some life left in it. So we gave it a wash down and oiled it up and passed it on to another little boy who needed a special bike. It was so fun to see another little one enjoy the freedom that this special trike could provide.

So it was time to find a new trike for Liam! I was very excited to find this fancy blue Schwinn trike at Canadian Tire for him.

A grown-up trike!
I rode it home with Phoenix's bike in the back. I must say it was a pretty fun ride! I may use it to go shopping again sometime soon.

Now that's a happy kid!
And last but not least Phoenix got a balance bike. He hasn't mastered pedaling yet, so this seemed like the perfect way for him to get familiar with the feeling of a bike. I think he may end up being able to ride a 2 wheel and not needing a specialized trike like Liam... but only time will tell. Phoenix was so excited. He kept shouting "Disney-Frozen-Olaf-Bicycle" in his over-articulate, quirky way.

He wants to follow his siblings everywhere. 
I was lucky enough to get a beautiful photo of everyone on their new bikes. Hooray!

Happy Day!
I am so excited for the summer to come. I wonder what kind of adventures they will have with their fancy new wheels!

May 15, 2016

The Loveliest of Days

Every day is an adventure with my special little family. I never know what the day will bring, what challenges or victories might occur. I've learned to take each day as it comes, and I've learned to tell myself that every day is Mother's Day. But once a year Mother's Day arrives according to the calendar. For the past 3 years, for various reasons, Mother's Day has turned out to be a challenging day for me and my brood. So this year I approached with caution.... I didn't make any big plans ahead and didn't expect anything special.
This year I was blessed with the loveliest of Mother's Days! It turned out to be a low-key, relaxed, home made treasure kind of a day. What a joy!

The day started with a some lovely home made gifts!
An adorable photo collage from Phoenix
Rice Crispie Treats from Liam. He decorated it with a paver made from chocolate chips!!

And from Kaya, a beautifully made card. 
We spent the afternoon playing together in my mom's backyard, the children enjoying their time together while we had pizza and chocolate cake. The sun was shining... who could ask for more? 

My mother and I
Gramma's cherry tree
Mother & Daughter

That face!
The loveliest of days!!
Not every day ends up as wonderful as Mother's Day did this year. But I will try and remind myself each day that it is possible and that.....

May 4, 2016

Conversation Can Be Hard

I am a talker... conversation comes easy to me and I love to share my thoughts and learn what other people are thinking and feeling. Kaya is even more outgoing than I am. Even Phoenix seems to enjoy people - he greets his friends and teachers when he arrives at daycare and says hi to neighbours when we pass them in the neighbourhood. But for Liam it's much harder. Conversation does not come naturally to him - in fact it can be a special kind of torture for him.

We have lived in the same neighbourhood his whole life and spend a great deal of time at Holland Bloorview Kids Hospital where he is a popular kid. Everywhere we go we see his number-one pet peeve - acquaintances. Liam dreads running into acquaintances and being expected to go through the ritual of small talk. Liam has been known to growl, yell, grimace, or stick out his tongue at any number of friendly people who greet him in his daily travels. Ever since he was young, "hi's and 'how ya doing?'s have bothered him.

A little while ago Holland Bloorview created a lovely web bio about our family (click HERE to watch it) and he is a bit of a celebrity of sorts there. Everyone knows a lot about him and he doesn't know them - and that kinda freaks him out. He goes there every week for therapy and frequently for other appointments on top of it.

So last week I sat down and I had a think. What can I create for Liam that would help him connect with people and break the ice? I came up with the idea of conversation cards... Here's how they work; Liam chose 8 questions that he might like to ask people and we created little cue cards.
This is what Liam wants to talk about.
It took a bit of brainstorming but he was able to come up with some great ice breaker topics that would give him and his acquaintances something to relate to.

I cut the cards out, laminated them and put them in a ring...

We've tried them out at Holland Bloorview twice, and so far they've been a success!! There's always little things that we can work on - Liam insists that people answer EVERY question and I'm not so sure that he's actually listening to the answers. But they do seem to break the ice and give him a way to relate to people.

Ready for conversation at Holland Bloorview.

Apr 28, 2016

Reaching Out on Canada AM!

This week I was very lucky to have the opportunity to reach out to my community on Canada AM - a national morning news program. It happened so quickly I didn't even have time to be nervous! The host Marci Ien was lovely and made me very comfortable, it was just like having a conversation about my boys and my community.

Here are a few behind the scenes photos, and a link to the interview! What a thrill to get to share our story!

Waiting to get started
In the Green Room
Live on Air!!
Live on Air!

Talking about raising children with autism
So excited to share our story!
With Marci Ien and Dr. Melanie Penner

Apr 24, 2016

30 Seconds in the Grocery Line.

It's been a pretty rough weekend in our household. Kaya and Phoenix have both had the flu for days; fever, sore throat, fatigue, queezy tummies.... you name it. Kaya has reacted much like you would expect from a 10 year old - she wants to rest. She has been playing on her iPad, watching some TV and drinking lots of fluids.

Phoenix has reacted very differently. He vacillates between hyper & angry, there is no settled time. And all of these paths lead to Meltdown Land. He coughs and cries and screams and coughs and hits and throws and coughs. It's a pretty vicious cycle.
Under the weather.
Today I knew that Kaya needed a break from him, so I decided to take him out of the apartment for a while. No way could he handle anything active, so we just went to the coffee shop and the grocery store. He did pretty well until we found ourselves in the line-up. As I was placing the groceries onto the conveyor, Phoenix decided that he should escape from his stroller.

I caught him just as he was about to run off. Then in the course of 30 overwhelming seconds the following occurred:

  • I picked him up with one arm while prepping the harness of his stroller with the other
  • he kicked off both of his shoes which flew far away
  • he scream-laughed like a lunatic
  • I got his butt connected to the seat of the stroller
  • I used one hand to restrain him at the hips while trying to use the other to clip his harness into place
  • the action of all of this moved the stroller back so that it hit a railing and the parent tray flew off, spilling it's contents to the ground
  • I continued to pin him into the stroller by the hips while trying to clip the harness while he thrashed and hit me and screamed and kicked me and knocked groceries to the floor.....
  • I calmly begged him to stop, to just let me pay for the groceries, to let me pack them and let me leave
  • the cashier quietly stared, waiting for me to put the rest of my groceries onto the conveyor and pay and leave.
Then the lady behind us spoke up.

This is generally a very bad development. People scold him or try to touch him and blow an already out of control situation into disaster mode.

But that's not what happened today.

She calmly looked at Phoenix, keeping her distance. She said "Boy are you a cute little thing. Do you like goldfish crackers? Because I have a bag of them here that I would like to share with you" She smiled at him. He smiled back and took a cracker from her while I swiftly strapped him into the stroller and began to finish my transaction.She chatted kindly to him and told me how adorable he was. She offered him more crackers and giggled when he tossed them onto the floor. Then she picked up the contents of the parent tray from the floor while I paid.

She changed the entire course of my morning.

Shopping with Phoenix is HARD!
With one simple gesture, one non-judgmental act of kindness, she made my entire weekend. Kindness is such a rarity for me and my boys - especially in the grocery line. There's something about waiting in the grocery line that usually makes people frustrated and intolerant of my little one's antics. But not today. Today it took all of my strength not to hug a stranger. Instead I write this in tribute to her. She's the hero of my weekend - and all it took was 30 seconds of kindness. 

Apr 23, 2016

To Tell or Not To Tell? (part 1 - Self-Acceptance)


It's a pretty big decision and one that is individual to every family and parent raising a child with autism. Who are you willing to share the diagnosis with? Everyone? No one? Eventually you have to ask yourself.... Do I tell my family & friends? The schools? Do I tell my child that he has autism?

I've sat in on some pretty passionate debates over this topic, and like many other aspects of raising a child with autism... it can be something that parents have strongly held beliefs about. I believe that the choice is individual to each family, and the reasons for each family's choice are their own. That said.... I choose disclosure. I disclose my boys' diagnosis to everyone, I don't ever keep it quiet. Today I will share some of the reasons why:

Self-acceptance: It's very important to me that my boys grow up understanding who they are. At almost 13 years old Liam is emotional, creative, quirky and humourous. As with any adolescent he is becoming interested in his role in society. From his family to his school, in public and beyond, Liam tries to see himself through other people's eyes. He wants to understand how he fits into his social circle.
Liam is on a journey of self discovery
Liam is very aware that he is different, that he doesn't just slip into social situations with ease; that requires effort for him. He understands that emotional regulation is challenging for him. He knows that his interests are quite different than those of other boys his age. It's important that he understands the reason he struggles - and that reason is autism. He went through a phase where he was interested in his brain - he wanted to know how his brain was different than the brains of his neuro-typical peers. We looked online and on youtube and we talked to his doctor. He even had the opportunity to look at an MRI of his brain that he had done for research.

I fear that if Liam didn't know that he is autistic, he would know that he was different, but not why. He might think of himself as less rather than unique. When Laim and I discuss some of his struggles and strategize solutions... learning about autism gives us context; some rhyme and reason behind his reality. We talk about autism a lot, and about how it affects his view of the world and the world's view of him.

Sometimes Liam is very upset about the fact that he has autism - he tells me there should be a way to cut it out of his brain and make him just like everyone else. My instinct is to remind him of the things about autism that can be advantageous, that make him unique: his amazing memory, his talent for imitating accents, his vast general knowledge of quirky trivia, his own irressistable charm.... But I try to fight this instinct - I think it's important to let him be angry about having Autism, it's his struggle and he doesn't have to just sit back and accept it. But it's important to me that he understands that autism is what causes his struggles - that he doesn't just have a flawed personality... and that's exactly what I fear he would think if he didn't know he has autism.
He's not bad-tempered.... he's autistic
Liam has always known he has autism, I didn't sit him down one day and explain it to him. As he was growing up I would talk to him about it. When he struggled in ways that his peers obviously didn't we would talk about autism and how it was affecting his behaviour. I have always wanted him to understand himself.

Because he needs to be able to advocate for himself.

I believe that this approach is the right one for my family. I want my boys to be strong self-advocates and to contribute to their communities to the best of their abilities. And this is why transapancey and disclosure is the right choice for MY boys.

Apr 17, 2016

Finally Spring

Today the kids and I were SO happy to welcome spring. After a long winter of forcing Liam to wear a hat and bundling Phoenix into all his gear AND his covered stroller, we were SO SO happy to leave it all behind and enjoy some sunshine!!

We walked over to my mom's and pulled out the bikes. Well... except for Liam because he's grown out of his. He will be getting a full-sized three wheel bike in may - it's going to be pretty exciting!

Phoenix was pretty tired today as he's given up napping except at daycare - which can be a challenge for everyone involved! So the change of scenery was nice for everyone who lives with him - hahaha.
Phoenix loves to chase Kaya around - Even if he won't actually get ON the bike!
But what he actually loves to do is spin the wheels (and really, who doesn't?)

I was even lucky enough to get a family photo (with the bike included, of course!) That's a pretty rare treat around here..

I hope everyone out there was able to enjoy some time in the sunshine too!