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.
I wish I could tell you that this Mom in the picture was wise and ready for whatever came her way. But, she was young and naive and just getting her feet under her after the birth of her first child. Things weren’t going as they were supposed to and behind the smile, she was struggling like never before. Struggling to understand what she was doing wrong and why her baby wasn’t sleeping, eating and was doing so many repetitive things. She had read all the books and taken the parenting classes, but none of it had prepared her. No one told her that she may have a child with special needs and what that life would look like. Not one person mentioned that possibility, the one that became her reality.
She was devastated when she realized that her child was autistic. Devastated because she didn’t even know what that meant for her child-and that was the scariest thing that her child’s life now had a label, that she didn’t understand.
She didn’t know that she would cry in her car after someone mocked her child in the grocery store because he flapped his arms.
She didn’t know that other moms would stare at her at the park and give her looks of pity as her child lay by the swings crying from sensory overload.
She didn’t know about the trips to the ER for climbing and running injuries, and all the therapies.
She didn’t know what it was like to be excluded, but she learned that lesson the hard way.
She didn’t know that she would be so isolated that she would crave a smile from a stranger or a pleasant exchange with the gas station attendant.
She didn’t know that she would watch people come and go, some running as fast as they could to get away from her and her child.
She didn’t know that people would make assumptions and judge her because her child was different. That their lack of understanding would cause them to blame her.
She didn’t know that people feared different instead of embracing it.
She didn’t know that different was often received with the most unkind and cruel remarks.
She didn’t know real exhaustion.
She didn’t know what it was like to fight for every single thing like proper care, safety, education, health care and accessibility.
But she also didn’t know that….
You can find the joy in every day.
How one smile or squeal of delight from your child can make your day.
How someone’s heart and soul can smile from a new pair of buzz lightyear shoes or a song about toilet paper.
That there are many different ways to communicate and that love needs no words.
That watching your child hold a cheesie, or climb a set of stairs could be a bigger accomplishment for you than being handed that university degree.
That it is okay for someone to not be a good fit for your child and to outgrow people and watch them leave.
That the right people will find you and stick around.
That boundaries and doing what’s best for your family would become your peace and priority.
That strangers can love you and your child like family.
That simplicity is good for your soul. You will never feel more alive than you do walking on a beach, laughing until you cry or feeling the wind on your face.
That your heart can break and you can also feel immense joy all in the same hour.
There are many different ways to reach a goal or acquire a skill.
That a life lived differently, is not a life less loved.
That a diagnosis is a road map but not a final destination.
After the diagnosis, there will be some really ugly days, some heart breaking days and some of the absolute best days of your life. Days when your heart is bursting with so much love and pride.
You will realize that your child is the amazing person that they were meant to be and they will teach you so much about unconditional love and personal growth that you won’t be able to express it with words.
And through it all your child will constantly remind you that anything is possible, the sun always shines again, and some of the best days of your life haven’t even happened yet.
Six years later, as this mother looks back on this picture she knows that most importantly, despite it all, she has found joy in her journey.