Autism and Hockey

I have been getting so many messages about Stalen’s love for hockey and how going to games works for our family.

I know so many families like ours live in isolation and want to find something that the whole family can enjoy together.

Of course, every person with autism is different so just because Stalen loves it that doesn’t mean every autistic person will love hockey.

Last year my husband suggested that we attend a local hockey game with no expectations and Stalen was completely mesmerized by it. The big screen, the team skating on the ice, the team mascot, all the sponsor logos around the ice. He immediately fell in love with local hockey.

His favorite team, the Fredericton Red Wings have accepted and included Stalen just as he is. This has made him love hockey even more.

Here are some tips on how hockey has worked for us…..

-go to a game with no expectations, if it doesn’t work you can leave at anytime. If it is working you can stay for a period, leave on a positive note and stay longer at the next game.

Our goal is to one day take Stalen to a NHL game. If we had started with that kind of game with thousands upon thousands of fans and a huge venue our experience with hockey probably would be much different.

-choose seats that are easy to access. No one wants to be stuck in the middle of a long row. Stalen doesn’t like anyone sitting behind him and he likes to stand up so we choose seats that accommodate that for him.

-consider the noise. Bring noise cancelling headphones if your loved one will wear them.

-bring snacks, iPad, fidgets and other items that your loved one enjoys. Stalen loves to watch the game but also takes break from watching by perusing his iPad.

-a social story may help prepare for what to expect at a game.

-move between periods. Stalen likes to go for a walk between each period of play.

-Elopers should sit between two people. Stalen sits in the middle between me and Dee.

-You can get special glasses that reduce the glare from the ice.

-Visit and tour the venue before the game.

-Do what works for your family. We bring Stalen’s special needs stroller to games. It helps keep him safe. Sometimes he watches from his stroller, sometimes from the seats.

-Local hockey is a great place to start.
By supporting your community, you are increasing the likelihood of future positive interactions, participation and inclusion in your community.

-If your loved one is an AAC user, you can show them visuals depicting hockey vocabulary. Stalen’s favorite hockey word is “zamboni”. He can type and spell it.

-Bring AAC to hockey game and have hockey words and phrases ready to go.

-If hockey becomes a regular outing for your family you can use a visual calendar so everyone knows when the next game is.

-if hockey works for your family, season seats ensure consistency and that you get the same seat at every game. It works really well for us.

I think the real strategy is just to get out in the community and try new things…learn what works and what doesn’t.

Stalen feels amazing to be out in the community. People love to see him at games, so many smile and wave at him and just love to see him enjoying being there.

Over the years, we have had some really great outings and some really bad ones. If the bad ones caused us to stay home and never try again, then we never would have discovered that Stalen loves hockey and it brings him so much joy.

As a side note….if you are in the Capital Region we would LOVE to see you at a Fredericton Red Wings game‼️

Kindness in the Community

Thank you to the Fredericton Riverview Ford Red Wings for including Stalen and making him feel so special.

Stalen was invited to the dressing room after the game to meet his favorite hockey team and Jesse Campbell Magic. It’s an understatement to say that it was everything to him! He even told them a hockey joke and presented them with a copy of both of his joke books.

This amazing group of men may not realize but they have left a lasting impact on Stalen just by greeting him, laughing at his joke, and showing him kindness. They play with heart both on and off the ice. Stalen cried when it was time to go home. But, it helped when I promised him he could go to their next home game.

He can’t wait to watch them in action again on Thursday night.

Exclusion

I write a lot about inclusion-about how every one should be accepted, included, valued, and free to be themselves, receive equal opportunities and the importance of inclusion in all areas of life like school, healthcare, community, work and social. But, I don’t write a lot about what happens when someone is excluded.

We are no stranger to exclusion and I know so many of you have experienced it also. As a realist, I know that we will encounter instances of it many times throughout Stalen’s life. As an optimist, I hope that by sharing his story, by showing the world ALL that he is, that we may help minimize those instances for him and others like him.

While I can’t exactly describe how it makes Stalen feel….I know it makes him sad and reserved. As a parent, it is heartbreaking. We work really hard to ensure that everyone he encounters includes Stalen and treats him with respect. We also take great offence when that doesn’t happen.

Sometimes exclusion is really ugly and intentional, other times it is subtle, it could be the result of an accidental mistake or a lack of awareness of others and their needs. The sting burns and is long lasting when exclusion comes from those we thought we knew like family and friends. But, regardless of motives, intent, or other situational factors it is never okay and always hurts.

Exclusion floods the road that inclusion has built. It seeps into the foundation and creates damage and destruction. It causes you to second guess what you know, examine motives, relationships, and fiercely guard those that you love.

I am the mother to the most amazing 8 year old boy. He deserves to be included and have the same opportunities as everyone else. No one has the right to take that away from him. While he may be included the majority of the time, it doesn’t make those situations where he is excluded any easier…

it just shows us that we need to continue to build that road, to put our messages and stories out into the world, to educate about autism, inclusion, medical complexities, to celebrate differences, to remind that we are all human, and we each add value to this world-just like my sunshine boy! ☀️ 👦

3:45AM

I was startled awake at 3:45am this morning. I awoke to pure darkness. I had stayed up until midnight so it took me about 10 seconds to gather my bearings.

It sounded like a large animal charging, maybe it was our German Shepherd Andrew or perhaps a moose. But, then I heard the familiar squeals and giggles of my 8 year old son Stalen. He burst into the bedroom running at full tilt and laughing. He was lugging his toy story pillow. He had clearly thought this out! He threw it into the bed and then jumped in after it. The giggles were louder and more intense now.

I turned on a bedside light and thought to myself…..way too early as the Toy Story pillow perhaps deliberately, smacked me right in the face. He quickly placed it beside my head and there he was. Smiling at me as if he just returned from a very long trip and hadn’t seen me in months.

As I said “go to sleep buddy”, he reached over and pretended to steal my nose and throw it out of the bed into oblivion, just as I had pretended to do to him on Thursday in the middle of the apple orchard. Then he laughed like he had pulled the ultimate prank and in a way he had at 3:50am. But, I’m sure it was really a lesson in ultimate payback for my antic with his nose earlier this week.

And with a gigantic sigh I thought to myself….awake at 4am on a Saturday but at least we never wake up late or boring.

Perspective is everything. 😂

Volume 2 is HERE

It’s here‼️

Pre-order your copy of Jokes Are For Everyone! Volume 2 which will ship on October 17 via Canada Post Regular Mail.

You can purchase a copy, a signed copy, or a bundle with both joke books-all available at Stalen’s Way Gift Store (www.stalensway.com) The book will be coming soon to Amazon.

This book means so much to us as it is dedicated to Stalen’s Nanny Vicki who recently passed away. Stalen was involved in every aspect of this book from choosing the colors, pictures, and jokes.

As always, a portion of the proceeds will go towards local organizations and projects in our community.

🤗❤️🙂

Stalen’s Way

He is vibrant happiness.

He is the smile of hope.

He is more than any diagnosis, challenge, barrier or obstacle.

In the face of a limit, he is the little boy who could.

I hope that he reminds people of the potential of love and infinite possibility.

That is Stalen’s Way

With Severe Impairment

The words never get easier. They sting across my face as I read them, transcending from my eyes to my lips.

“with severe impairment”

There they are written as though they mean nothing and everything. The words that bring supports and services and perhaps an explanation that may present an increased understanding from the outside world. We see these words in reports, on assessments, in textbooks and in applications. They are rarely spoken outright because they imply huge limitations.

Yet, give him an iPad and he can tell a funny joke, trace letters, count, make a playlist and text it to me, purchase an app, send a text and ask for a piece of granola or a foot rub please.

It’s kind of like a sunny day. You can tell someone it’s sunny but that doesn’t describe the entire day. They can’t feel the warm heat of the sun, taste the lemonade that quenches your thirst or hear the laughter of kids playing in the sprinkler nearby.

You can’t tell an entire story in just 3 words…

Severe impairment may imply limitations but it doesn’t do any justice to describing the boy that I love and adore. Stalen is funny in the coolest way. While humor may come naturally to many of us through our words and actions imagine how difficult it is to be funny when your non-speaking and have major gross/fine motor delays that affect your ability to complete some body movements and tasks. Yet, he is undeniably funny. He is also charming, kind, loving, adventurous, and handsome with the best laugh, biggest smiles and hugs.

Stalen rises every day beyond the limitations imposed by conditions and a diagnosis.
These words “severe impairment” are only limiting if we believe and allow them to be.

While limitations may exist in the mind and on paper…..

there are no severe limitations of the heart.

Every beat is an opportunity for love and a pulse for great potential. His rhythm is one of love, joy and purpose to spread good in this world.

So, let this be another chapter in the story of the little boy who rises above and is more than any report, assessment or textbook definition.

As always, don’t judge a book by its cover or someone’s story by the the chapter you walked in on …

A Nightmare….

This is my 8 year old son Stalen. He is autistic and non-speaking. He also loves books, the color blue, jokes and he has the best smile. He is an amazing boy.

In March 2022, he got his life changing gastrostomy feeding tube. Since then he has been able to gain over 30lbs, stay hydrated, avoid hospital admittances, and take all of his anti-seizure medications through his feeding tube. He receives 4 full feeds a day which accounts for the majority of his daily nutrition.

Since July when the #PSHCP a Government of Canada sponsored health care plan, changed from administrator Sun Life to Canada Life they no longer have been covering Stalen’s feeding tube or feeding tube supplies-without any notice or reason. It’s actually impossible to even get a representative on the phone.

Thousands of Canadians like my son Stalen are experiencing interruptions in their previously covered health equipment and medications since July and the transition to Canada Life. Many of these medications and equipment are necessary for life.

Yes, you read that right…..

life saving medications and equipment are being DENIED to Canadians.

It is a ridiculous situation when a mother has to tirelessly advocate so her child’s basic needs can be met, needs that are being interrupted by the Government of Canada (and their plan administrator). I’m not sure who in Ottawa needs to sign their name or flick a switch and correct this nightmare but it needs to happen two months ago.

The Lucky Ones

What Does Autism Mean to Your Family

Autism means a beautiful, brave, authentic, little boy who we love and adore. While we know that he is not defined by his autism, we also realize that it is one of the many pieces that makes him the amazing boy that we love.

It is challenges, chaos, simplicity and love.

It is no two days being the same.

It is sleepless nights, belly laughs with the wind in your face, and everything in between-from the highest high to a crashing low, from basking in the sunshine, to sitting in the dark. All in the same day.

As a mother, it means that my child is perfect just as he is. I will fiercely love, encourage, support, and defend his right to always be himself and how he sees the world differently, for as long as I live.

Autism is ever present in our lives wrapped in love, interwoven in complexity and challenges, but softened ever so slightly by finding the joy.

But most importantly to us, it is a person to be loved not a diagnosis to be feared.

We are the lucky ones-better and blessed for knowing and loving him.