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.
For the longest time, I’ve always thought that a smile meant happiness. I mean isn’t that why we are told to smile for pictures, to show we are happy?
When you have a non-speaking child you learn to pay close attention to smiles and the communication behind them.
When Stalen is having a medical procedure he often smiles at me. His smile reassures me that despite what he is enduring he is okay.
When I see Stalen every morning and he smiles at me I know it is his way of greeting me with a “good morning”.
When I see Stalen for the first time after being away from him I know he’s smile says “welcome back, I missed you”
When I show Stalen something new, his smile tells me that he is interested, curious and wants to see more.
When I’m eating and Stalen smiles, I know he may want to try a bite or have a better look at my food.
When I’m struggling with something and Stalen shoots me a smile, I know it’s his way of being supportive and encouraging me to keep going.
When Stalen squeals and smiles, it’s a sign of pure unfiltered excitement.
It is music to my heart.
When I show him something and he smiles and raises an eyebrow, I know it’s his way of saying “you got to be kidding me”
When I ask him a question and he just smiles I know it’s his way of saying “your not going to like the answer to that”.
When he wraps his hands around my neck, looks straight into my eyes and smiles, I know that it’s his way of saying “I love you Mom”.
Stalen has taught me that a smile is so much more than happiness. It is just one of the unique ways that he communicates with me. We have our own form of communication, accepted and understood between our hearts. It is a symbol of hope for all to see and feel, you just need to listen with your eyes and heart…
What’s in a smile?
So much Power….hope, light, love and so many unspoken words felt by the heart.
As he sat on the buddy bench for a rest, my heart broke a little. I imagined him sitting here by himself, yearning for a friend-someone who understands and accepts him. Someone other than his Mom, Dad, brother and sisters.
My son Stalen is 7 years old, autistic and non-speaking. I have prayed, hoped and wished for amazing friends for him.
I find it hard to build and maintain friendships and relationships. I can’t imagine how hard it is for someone who has difficult communicating. But, I know he will find his way and learn to build and forge friendships, the Stalen way.
It takes someone special to see beyond the challenges instead of just seeing the challenges; to see the whole person. I’m hoping for that special person for my son, or special people.
We have had brief tastes of friendship. Invitations to a party, a child reading Stalen a book, a child sitting beside him to eat a snack, a child who told his parents all about his friend Stalen.
A true heart connection lies at the basis of friendship and that is what I’m hoping for for Stalen.
A friend who will giggle when he tells them a joke on his communication device, a friend who will sit beside him at eat their snack while Stalen is hooked up to his feeding pump, a friend that won’t blink twice at his stimming and arm flapping, a friend who thinks his super hero ostomy bag cover is cool, a friend that can come to Dairy Queen with us on Fridays and run through the sprinkler on hot days.
A friend who will see that together they can have fun, go on adventures, and support and encourage each other.
A friend who always sits next to him on the buddy bench.