Tag: Autism

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.

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. 😂

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 …

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.

Being Stalen’s Mom

When I became pregnant in 2014, I was beyond excited to become a Mom. Time passes so slowly when your waiting with extreme anticipation. People told me things like sleep now and your life is going to be changed forever. But, no one told me how much I was going to love my baby. Nothing and no one can prepare you for those first seconds in the delivery room when you see your baby for the very first time. Time stands still as you examine every finger and toe, and realize their is nothing more exquisite or perfect than your child. There are rare times in life when you may witness magic on earth and that moment is definitely one of those times.

On April 12, 2015 at 12:11pm I embarked on the greatest journey with purpose of my life-to be Stalen’s Mom. I believe that everything happens for a reason and that many of my experiences and education up until that point were all foreshadowing and necessary for the challenge of motherhood that stood before me.

Yet, despite all of those things I’m still not sure how I go so lucky. My boy is amazing in every way. He has given me some of the best moments of my life purposefully woven with love, joy and struggle.

Every story has a hero.

Someone that inspires you to see the world differently, in a new light. Someone who makes you want to do better, try harder and to be a better person.

In my story, my son Stalen is that hero.

Stalen was diagnosed with autism when he was 21 months old. In the past 8 years he has taught me so much about love, growth, strength and perseverance. It changes you deep in your core when you watch a person struggle and fight every day for progress and skills that come easily for many. It is heart breaking when that person is your own child. Yet, he never shows signs of growing tired, becoming weary or giving up. He only knows how to fight.

Stalen has helped me discover an inner strength and a strong voice that I didn’t know existed. While some may claim to lose themselves in motherhood, I may have found myself with a renewed purpose. He reminds me to always look fo the good even if you have to dig deep to find it. I admire him wholeheartedly for the amazing boy that he is.

He really has opened up my eyes to the true potential and immeasurable value of every human being. I now see the world clearer in vibrant beautiful colors because of him.

He doesn’t care what you look like, what your wearing, or what you do. He cares about the connection that exists between your heart and his. While he may lack the words to verbally express love, he feels it deep within his soul cascading from his head to the tip of his toes. In turn, his love shines on you from his wide smiles, twinkling big eyes and tight squeezes.

Stalen appreciates the simple things. He doesn’t care about presents, the most popular toys or tv shows. He appreciates your time and being present in the moment with you.

He was amazing in my dreams before he was born, he was exquisite at birth when we met for the first time and he continues to be beyond amazing each and every day since. I’m not quite sure what I did to deserve him but I am lucky enough to be his Mom.

I’ve never been lucky in anything in my life. But, I’ve nailed it with this kid.

Even on the hard and difficult days there is no place else I’d rather be than right there in the thick of it with him.

I’m not just lucky, but honoured and proud to be Stalen’s Mom. It’s a role that I take very serious and embrace every day. I will continue to strive to be the very best mom that I can be for him.

That’s Not the Case For Us

Without any hesitation I can say that my son has made me the mother I am today.

He has made me strong and brave as he has allowed me to come along with him as he faces his challenges in the same way.

He has increased my awareness that everyone is beautifully different and capable.

He has helped me to find the joy in each day.

He has shown me an appreciation for the simple things.

He has taught me the importance of kindness, patience, and understanding.

He has shown me that words and actions do matter, especially those directed towards someone else.

He has taught me that there is more than one way to communicate and more than one way to do most anything.

He has taught me that it is okay to have hard days and bad days.

He has shown me an appreciation for things that I used to take for granted like the warmth of the sun, the tickle of the wind and grand adventures.

He has shown me the power of hope, love and positive thinking.

He has taught me that you can still go through hell and smile.

I’m an improved version of who I once was.

He has made me better. He pushes me to be the best version of myself every day.

I read a quote recently and it said,

“ men are what their mothers made them”.

But, that’s not the case for us.

World Autism Day!

Today we celebrate all the amazing autistics that we know. Thank you for making our world better and brighter. 🙏 ☀️ ✨

We also celebrate our amazing boy and the bright light he shines into this world. We are so thankful for him, his sense of humor, his unique loves and interests, his smile, his love, and the beautiful soul that he is.

🎶 Everywhere I go, I’m gonna let it shine. 🎶