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.
He had such a challenging year with starting school and his health. It was particularly difficult transitioning to school and being away from Mom. ￼
Since January he has had 3 surgeries, got an ileostomy and a gtube, was hospitalized with Norwalk virus, had cellulitis, bronchitis, group A strep infection at his gtube and a bout of the flu. It’s been wild to say the least.
This school year he not only grew in height but his strength and tenacity grew, he acquired new skills, he made friends, was invited to a birthday party and brought so much joy to so many.
I love hearing stories of him in the hallway giggling and making everyone that hears him giggle and smile too!
I’m thankful and grateful for his teacher and his EAs who worked hard to facilitate his learning, made sure he was always included, kept him safe (which is so hard!) and made school a positive experience despite his health challenges.
The mountain he climbed was so high, he faced many challenges and more, yet persevered. He is so brave, so strong and so resilient.
Stalen will be going to grade one in the Fall, hopefully more rested after a fun and adventurous summer, probably a little taller, but with the same great smile.
Recently I took my autistic son to our local emergency room. He wore his wireless headphones just like he does everywhere we go. Throughout our visit, several healthcare workers attempted to speak with him. They did not know that he was non-speaking. In those moments, I had a choice to make…to just go with it or to tell them that my son was autistic and non-speaking.
I’m not going to lie, sometimes it is draining to explain to people over and over that my son is amazing and autistic. Sometimes I’m tempted to just go the easy route. Sometimes when he doesn’t respond and they say, “he must have his headphones too loud and can’t hear me”, I want to nod in agreement. But, nodding in agreement is not going to change the world for my son or create autism awareness.
When I tell people that my son is autistic I can gauge their level of autism awareness. Some continue talking to him as if it doesn’t matter, some become awkward and act embarrassed, and others can’t get away from us fast enough.
Conversations need to happen so that we can open hearts and minds to autism. It is a person to be loved, not a diagnosis to be feared.
We live in a world with a foundation and systems that were built upon the ideology of sameness, that people are similar, hit the same milestones and see the world through the same lens. Autistic individuals like my son, see the world through a different lens.
To me autism awareness means sharing our stories and experiences to educate and inform others about autism. By doing so, people develop a better understanding of autism.
Autism awareness and acceptance means someone sees my son flapping his hands and stimming and they recognize that he is autistic. Instead of thinking that his stimming is weird they think he has a great smile or nice eyes. When people are autism aware, my son’s autism is visible but not the focus of his presence. These people see beyond his autism.
Each and every time I have the opportunity to share and educate someone about autism, I take it! I am committed to trying to make the world better for my son, so he has a brighter future filled with understanding and kindness from others. No one ever changed the world by remaining silent or nodding in agreement.
I don’t know many people who have such an appreciation and love for the feel of the wind on their face. Most people scoff at the wind and how it may be cold, mess up their hair or blow things away.
This picture is the epitome of joy.
I believe that there are some special people walking this earth that are filled with such joy for life, that it shines from them and radiates around others. The purpose of these special people is not the things that they will do in their lifetime, but the lives that they will touch. They touch others not through words or action, but rather through how they choose to live. They choose happiness and joy, appreciate simplicity and see beauty in everything even beyond the surface.
My sunshine boy is like this….
He sees and feels the world with his whole heart. He lives joy every day. When joy doesn’t exist he creates his own.
Happy 7th Birthday to our sweet, handsome blue eyed, smiling boy. He amazes us everyday with his strength, fighting spirit and huge personality. He wakes up everyday happy, smiling and makes our days so much brighter and happier. He loves life, Youtube, fruit explosion muffins, music and his Beats headphones. He is truly loved beyond measure by his family, friends and everyone who meets him.
I can’t wait to experience the adventures, love, laughter and successes of his 7th year with him. I am so blessed and so very proud to be his Mama.
My wishes for his 7th year is that he continues to shine his bright light out into the world by being his true, authentic self; that he knows he is loved for the amazing boy that he is; that he continues to spread his wings and increase his independence; that he settles into school; that his health continues to improve; and that he follows his heart in all that he does.
Stalen… you are amazing, you are capable, you are loved.