Friday, 30 March 2018

Join Team Ottawa Senators for the Ottawa Autism Speaks Canada Walk 2018

(Follow this link, to donate to Leo from Team Ottawa Senators.)

While the Groulx family spends a good part of all of our days recognizing autism, there is a day in April where we like to encourage everyone to do the same.

April 2, 2018 is the 11th annual World Autism Awareness Day, recognized by United Nations member countries. The goal is to hold autism-friendly events and educational activities on this day and throughout the month of April. These events and activities are designed to increase understanding of this developmental brain disorder and encourage acceptance of the autism community.

Eli, Mommy and Leo wearing blue on World Autism Awareness Day 2017
Those who know our family know this is important to us because we have a member of that community in our household. Leo, our nine-year-old son, was diagnosed with autism when he was two.

I have written of the challenges we have faced with autism in our family. But for this blog post, and in the spirit of World Autism Awareness Day, I want to try to help you - someone who is not on the autism spectrum - understand what it is like to have an autism-wired brain and function in our society.

First, let’s talk about those hand dryers in public bathrooms. Holy. Moly. They are loud. And who needs that kind of force when drying their hands? 

While you might have noted yourself that the dryers are loud and weirdly powerful, to a mom with a child on the autism spectrum, they are downright villainous. I would like to take those hand dryers into a dark alley and give them a piece of my mind.

It was years before Leo could go into a public bathroom without crying.

When Leo was younger, I can only describe his reaction to those loud hand dryers as painful. His reaction was painful for me to manage. But, more than that, it was like the noise itself actually caused him pain. He would cover his ears and freeze, unable to move, tears streaming down his face. He would do this even if he was mid-peeing. It was terrible.

Sometimes I would even catch the person drying their hands flash me a quick look. I know what you were thinking, person-I-don’t-know. You were thinking, “Man, your kid is having a really dramatic reaction to me drying my hands.” Or you were thinking “It is loud but it is not *that* loud.”

But here is the thing. To Leo, it is *that* loud. It really is. Many people with autism spectrum disorder process sensory information differently than those not on the spectrum. In Leo’s case, he is sensitive to sounds (and smells - but we’ll get to that in a minute.) Hockey games are louder to him. School assemblies are louder to him. Crowds of any kind, louder to him. 

As Leo has gotten older, he has found ways to manage this sensitivity to noise in public bathrooms. In his younger days, we would be sure he had headphones or earplugs when he needed to use a public bathroom. Now, he can manage without them, but still covers his ears with his hands if a dryer is used while he is in the bathroom.

The twins are at that awkward age where I don’t want to let them out of my sight in public, but it is starting to feel a tad inappropriate to have them come into a ladies’ bathroom with me. So they have started using the mens' public bathrooms together. One time, I was standing outside the mens’ room, waiting for the twins. The door opened, as someone exited the bathroom and I could hear a hand dryer being used. I felt a moment of panic until I caught sight of the twins. Leo was standing at the sink washing his hands, while his twin brother Eli was covering Leo’s ears for him. This is equal parts a sign of brotherly love and of finding a way to navigate through tough situations.

So that hand dryer you are using is actually causing my son discomfort. No joke.

I am not saying don’t dry your hands. I am just saying if you see someone react dramatically in a bathroom to the noise of those dryers, please try to make it quick. Or do what the Groulx family does to dry our hands - the shake and dance. Works like a charm!

Let’s get back to smell. Leo also seems to have an increasing sensitivity to smell as he gets older. There are a number of foods that cannot be consumed near Leo - hamburgers, ice cream sandwiches, and vegan cheese, just to name a few.

A couple of weeks ago, I put the compost bin from under the sink on the counter so I could empty it. Leo was sitting nearby. He said, “Mommy, can you please move that compost bin?” I said, “Yes, I will move it just after I…” I never finished that sentence because Leo vomited all over the counter.

Yep.

He tried to tell me. I have learned that when Leo says a smell bothers him, A SMELL BOTHERS HIM.

I am specifically telling this story because I feel like people might not associate a heightened sense of smell with autism. I tweeted that story about Leo (@wkfg) and someone responded that he once vomited when family members cooked fish for supper, and that they took his response as an insult to their cooking. 

Here is the thing: Leo, and this man that tweeted his story to me, are not trying to be rude. If Leo tells you something smells like vegan cheese, he is saying that an odour is smelling absolutely foul to him. (I like vegan cheese, by the way!)

Think about the worst smells you have ever taken in. So bad they might have induced gagging. Now think about having to smell things like that on the regular.

There is one more story I want to share with you. Remember how I said that being in a crowd can be challenging for Leo? Picture being at the Rideau Centre food court (for those of you not from the Ottawa area, the Rideau Centre is a busy shopping centre).

One day our family was having lunch at the foodcourt. Leo started stimming (self-stimulation) in an effort to process being in the busy foodcourt. Stimming is common for people on the spectrum. It is a repetitive behaviour that is done to help process the overwhelming sensory environment. So, in the loud and busy foodcourt, he started jumping up and down, flapping his arms.

This got a lot of attention. I saw people sneak peeks at him. His Daddy saw it, too. I am betting his brother noticed the looks, as well. But we didn’t stop him. Leo was finding a way to be in a very uncomfortable-for-him environment while his family grabbed a quick bite to eat. 

Leo stims when he is excited. He also stims when he is anxious and needs to calm himself. As he gets older, we are working with him to hopefully adopt a less noticeable stim - maybe something like squeezing a stress ball. But for the time being, he jumps.

So the next time you see a child (or an adult) doing a repetitive, noticeable behaviour, maybe you will think of our Leo.

And maybe the next time you see a person cover their ears when you are drying your hands, or react dramatically to a scent, you might think to yourself, “Oh, maybe he or she is on the autism spectrum.” And maybe you might have just a little more understanding and compassion than you would have before. 

It is our family’s goal to do what we can to encourage awareness and compassion toward the autism community. Our Leo’s community.

That’s why once again the Groulx family has created Team Ottawa Senators and will be participating in the Ottawa Autism Speaks Canada walk, which will be held the morning of June 3 at the Bell Sensplex in Kanata.

My husband Pierre, our twin boys, and I started participating in the Autism Speaks Canada walks when we lived in Montreal and he was the goaltending coach of the Montreal Canadiens. Now, we live in the Ottawa area and Pierre works for the Ottawa Senators.

Last year, Mark Borowiecki from the Ottawa Senators, his wife Tara, and their dog Remi, came out to walk with us, and to support Leo and the rest of the autism community. The Ottawa Senators Foundation gave a generous donation to our walk team. And we are so grateful for the support we continue to receive from our family and friends.

Team Ottawa Senators at the Ottawa Autism Speaks Walk 2017

We are appreciative of your help and I am going to ask you all to do it again. :)

Please consider making a donation to help positively impact the autism community. Join our Team Ottawa Senators and walk with us on June 3.  

Follow this link, to donate to Leo from Team Ottawa Senators.

I spoke with Ashlee Pallotta, the Regional Coordinator, Eastern Canada, for Autism Speaks Canada (ASC) to help provide a better picture of the efforts of ASC.

“We work hard to raise public awareness about autism and its effects on individuals, families, and society. We aim to bring hope to all who live with this disorder and are committed to raising the funds necessary to support these goals.”

A recent report of the National Autism Spectrum Disorder Surveillance System states that approximately 1 in 66 children and youth are diagnosed with ASD in Canada.

ASC helps find ways to provide support to these children and their families, such as by funding autism services and programs across the country. ASC has funded more than 200 different organizations. Some Ottawa area service providers who have benefited from ASC funding include: Lanark Autism Support Group, Autism Ontario, and QuickStart - Early Intervention for Autism, just to name a few.

Another way ASC is helping support families is with tool kits. Ms. Pallotta explained that ASC has developed more than 40 tool kits designed to support autism families on a number of topics, including receiving the initial diagnosis, transition support, visiting a dentist, etc.

ASC is also working collaboratively with the Canadian Forces Morale and Welfare Services and Military Family Services to support military families and develop an Autism Military Tool Kit. Topics of these tool kits include relocating, starting a new school, navigating services and finding a community (Note: These topics would also work for hockey families!) 

Another ASC initiative is sensory-friendly events, including teaming up with Toys”R”Us to have sensory friendly shopping times and teaming up with Cineplex theatres across Canada to host sensory-friendly movie screenings.

There is a research component to ASC as well. I know that as a parent to a child on the spectrum, I think supporting the scientific initiatives that look to shed light on this disorder that is currently impacting 1 in 66 of Canada’s children and youth, is necessary and important.

I have only just touched on some of the initiatives of ASC. For more information, please visit Autism Speaks Canada.

Early intervention can make a huge difference. While ASD can be reliably diagnosed before age 2, the average age of diagnosis is closer to age 4. The more autism awareness that organizations like ASC can create, the better.

Pierre and I know that families with autism face many different kinds of challenges. Walk with us to support these families and the autism community. Walk with us to support our Leo the Lion.

Join Team Ottawa Senators and please make a donation if you can!

Leo at the Ottawa Autism Speaks Walk 2017