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.
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.
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.
Forever Boy by Kate Swenson may appear on the surface to be the story of a Mom with an autistic child. But, it is so much more than that!
It is the inspiring story of a Mom navigating an autism diagnosis, seeking supports, inclusion and education for her child, while also navigating motherhood, marriage, relationships, personal struggle, sorrow, hope and joy.
Kate and her son Cooper are an amazing example of a great unconditional love between a mother and her child.
The world needed this book and so did so many moms, families and caregivers. Kate’s memoir is the validation of so many unspoken battles that families face when trying to get the supports and services that their autistic loved ones need and deserve.
This must read-can’t put it down-page turner will leave you feeling seen, heard and rejuvenated to push forward to find the hope and joy in your own struggles and journey.
Whether you are a parent, friend, family member, or professional who wants to learn more and understand both the internal and external challenges of raising a child with autism….Forever Boy has something for everyone!
Thank you Kate for showing us we are not alone, and for your willingness to bravely sit in the dark with so many on similar paths.
My son Stalen was diagnosed on the autism spectrum when he was 21 months old. He is now almost 7 and non-verbal. He is also pretty amazing!
Here are 5 things that I’ve learned from being his side kick on this wild ride, that I want to share:
Autism is neurological. It is NOT physical or intellectual. There is no look to being autistic. Autistic individuals are quite intelligent and capable. They just see the world differently than we do.
There is no right or wrong way to perform a task, or reach a desired goal or outcome. Instead there are many ways. My son may communicate differently than you with the support of a device but he is just as capable. He may also require additional supports but that does not affect his worth or value as a human being. If nothing else, it shows his immeasurable determination and fight, please don’t try to stand in front of that.
My son wants to be accepted, loved and included just like everyone else. He wants to be active and involved in the community free from judgement and discrimination. He needs to be himself free from consequence. Please don’t invite him to the table and expect him to be like everyone else.
Meltdowns are not tantrums. Meltdowns are not a sign of always getting one’s way. Meltdowns are hard moments, signs of an individual trying to cope with an overwhelming world. Please be kind. Please don’t stare. Please don’t judge what you may not understand.
Autism is just one of the many pieces that contributes to the make-up of my amazing son. It does not solely define him as a person or define his life. There is no formula for a life well lived.
We choose everyday to live by embracing differences, kindness, understanding, unconditional love, adventure, laughter, hope and faith.
We always choose to believe in miracles, the power of yet and the goodness of others.
We share our story to inspire, educate and make this world a better place for Stalen and so many others.
Yesterday I had to get 4 items at the grocery store. I decided to bring Stalen with me and have him free moving without a Caroline’s cart and without any expectations.
It was a workout but he did so well. He only tried to run off twice and he was quite interested in what others had in their carts. 😂
He helped me bag the green pepper. He lifted the bananas in the cart. He pushed the cart for a couple of seconds to see what it was like.
Everyone deserves to have opportunities to learn and grow. Everyone deserves opportunities to be active and involved in their communities.
For us it’s about progress over perfection. Next time we will try to go for 5 items.
Leaps of faith are important because they help you push past limits and try new things.
They help you build independence.
Until you spread your wings, you will have no idea how far you can fly.
In 2017, Stalen was 21 months old and was diagnosed with autism. I didn’t have it all together. I was like a fish out of water. There was so much I didn’t know, so many worries, so many fears. What do you do first?
I stumbled across this page on Facebook called Finding Cooper’s Voice. The first video I watched was this Mom, Kate, crying in her car. It resonated with me because I knew there was at least one other person in the world who was feeling and struggling just like I was. Although worlds apart, we were together in trying to do everything we could for our autistic sons.
My friend Kate, has selflessly shared her family with the world, while enduring all the criticism and judgement that comes with that.
Her family is a fun loving and wild bunch. The kind of family that you meet and you want to be friends with. Her son Cooper is autistic and loves trains. He has two amazing younger brothers, Sawyer and Harbor. Sawyer loves hockey and Harbie is all about monster jam. They have a beautiful baby sister named Wynnie. Their Dad Jamie, is a grill master and fishing enthusiast.
My friend Kate is brave and strong. Every day she wakes up and does her very best for all of her children. She has also been a lifeline for so many. Not only has she made so many feel like they are not alone, but she has shone a bright light on autism….acceptance, understanding, inclusion and so many other topics that are important to families with an autistic loved one.
It is because of Kate and Finding Cooper’s Voice that I decided to start sharing Stalen’s journey. It is also through her writing that I realized that I needed to find the joy in every day, instead of focusing on the negative.
I am thrilled to support Kate as she prepares to launch her book in April. Forever Boy is going to be amazing. I have pre-ordered a copy and you can reserve yours on Amazon. #ForeverBoy #getyours
Stalen's Way 