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.
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.
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.
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.
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.
Every Sunday, Stalen tells a joke with his communication device. He is 7, autistic and non-speaking and loves jokes. Each week he shows us that jokes are for everyone.
Stalen's Way 