Tag: hope

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‼️

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.

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.

In the Community….

Stalen just stopped by Autism Connections Fredericton and donated $100 from the proceeds of his book ”Jokes Are For Everyone!”

Autism Connections Fredericton is one of our favorite places and they have provided so much support, encouragement, and programming to us over the years. They do amazing things in our community!!! ❤️

Stalen is waving hi from Oromocto & Surrounding Area Food Bank

Stalen stopped by and donated $100 to the Food Bank from the proceeds of his joke book, “Jokes Are For Everyone!”

The Oromocto & Surrounding Area Food Bank helps so many individuals and families in our community. Thank you for the important work that you do!

Stalen also donated $65 to sponsor a Christmas dinner for a local family from his book sales.

Way to go Stalen! Keep spreading your kindness in the community.

A reminder….

When Stalen was two years old he needed complete darkness in order to sleep. We had blackout curtains in his bedroom but it wasn’t enough. I took large dark coloured garbage bags and taped them over the windows. I had to do this in our bedroom as well because he often ended up in bed with us.

For over two years, we couldn’t lift the blind, open the window or let the light in.

I know so many of you will understand this….

We couldn’t risk messing up what we had in place because it was working.

When your child is struggling and you find something that works, you don’t allow anyone to mess with it. I would have fought anyone who tried to touch those windows and alter those garbage bags or how the curtains laid upon them.

At first the garbage bags were a dismal reminder that autism controlled every aspect of our lives. Stalen’s diagnosis was new and we were learning to navigate it all. As we settled in and found our groove, I realized that the garbage bags on the windows were a reminder that we were willing to do whatever it took for our son.

Now, almost 6 years post diagnosis we have no garbage bags on our windows. The light shines through. We have learned to ebb and flow, to live with autism. Time and experience have become two of our greatest allies.

Always remember….garbage bags on windows are temporary, it won’t be like that forever.

The current situation and how your feel at this precise moment, will not always be your situation and how you feel permanently.

The light will always find a way to break through the dark.

He Can!

When Stalen was diagnosed at 21 months old, I affirmed to give him a life full of rich experiences. I’m so proud of this joke book and what it has meant for him.

Over the last few months, it became a labour of love for us. This book is all Stalen! I have watched Stalen empowered as he made all the important decisions. He chose the cover design, the pictures, the color, which jokes we would use. He was in involved in every aspect. He struggle with his fine motor challenges to print his name on the very last page of the book. But, he was so determined and he did it!

It is determination.

It is ability.

It is hope.

It was made with love.

I hope that it will always remind him that he can do anything.

Autistics can have dreams, goals and successes! They can play musical instruments, be movie stars, be friends, paint pictures, do gymnastics, ride bicycles, make others smile one joke at a time, and anything else their heart desires.

Thank you all for your support-kind words of encouragement, purchasing copies, and shares.

Thank you all for helping to show him that

HE CAN!