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.
I love how this kid sees the world. While I don’t know the totality of his entire world view. I can tell you what I see…
A little boy who rises to every challenge while smiling. Quite simply, he loves life and it loves him right back.
A little boy who doesn’t care if you stare, if you say something rude, if you misunderstand his disabilities….he greets that misunderstanding with smiles and unconditional love.
A little boy who loves people that he doesn’t even know, because love is all that he knows.
A little boy who is fuelled by simplicity and seeks a connection of the heart over everything else.
A little boy who already grasps that happiness begins with yourself. A lesson that many of us strive our entire lives to learn and understand.
A little boy who will spin, giggle, walk backwards, close his eyes while walking and always moves in a wicked, wild, zig zag formation.
A little boy who makes the world better, more authentic because of his genuine kindness, more affable with his love, and brighter with his smile.
A little boy who may not be little forever, but a boy who will undoubtedly leave his mark on the world and all those who he encounters.
My boy, keep being you and continue to see the world just as you do through those big, beautiful blue eyes.
Written January 09, 2022 while in hospital with Stalen
Today Stalen and I made our way over to the big window in his hospital room. I sat on the bed and he leaned up against me. As we looked outside we could see children with their families sliding in a field nearby. They were having so much fun!
As I looked down at Stalen leaning on me to help him sit up, I saw his bandages from surgery and his ileostomy bag. I thought how different our lives are from those outside running, chatting and sliding.
It didn’t make me sad…not one bit.
In the past, I probably would have been teary eyed and wished so many different things for us in that moment.
Stalen has shown us that he can do absolutely anything that he wants to. Even if it seems impossible, he will find his way to get it done. You see just because my son is autistic, doesn’t mean he should live a restricted life.
Life really is what you make it, and we are determined to make Stalen’s great. A life of love, fun, successes, kindness, purpose, acceptance and adventure.
I know that our life is different from many others, and I’m at peace with that because I know that a life lived differently, is not a life less lived. That’s one of the greatest lessons that my smiley, blue eyed boy continues to teach me over and over.
I was naïeve when my son invited me into his autistic world. I took his hand and watched in wonder and awe. Never had I entered such a space of simplicity, beauty, complexity or hard. I made mistakes. I was ruled by inexperience.
I’m not sure when the breaking point came, that pivotal shift to the exact moment when I found my voice to advocate for my son. It’s more than a discovery, it’s about setting words into action. When you realize that not only can you speak up, but you will speak up. You will realize that what you say about your child, their health, safety and well being doesn’t just matter. Your words pack power because they come from a place of experience and knowledge, of having known them every single day of their life, through their highest, lowest, happiest and saddest moments.
No one else in the entire world holds that knowledge about your child.
There were so many things that happened that inched me closer and closer to growing into my voice. There was the middle aged lady at the grocery store that shocked me by laughing, mocking my son for his stimming and flapping.
There was the man that stood outside my car and verbally shamed me because he didn’t think my son or I looked disabled enough to be parked in an accessible parking spot.
There were the many whispers and stares of judgement and pity from other parents and strangers in public places during meltdowns and behaviours.
There were conversations with doctors that made me feel that my concerns about my sons health were ignored and dismissed.
It really was a battle from the very beginning just to get the diagnosis, then the fight continued for every program and every support that we needed.
Nothing comes easy when navigating an autism diagnosis with your child.
The final straw was when I reached that epiphany moment of realization that we live in a world that was built upon and operates on the idea of sameness.
Our fundamentals-systems, organizations, institutions are all based on the idea that we all have exact or very similar needs.
I have realized this over and over again as I raise a child who sees and experiences the world differently than everyone else.
Recently, I’ve noticed that my voice is stronger, more focused, and resilient. The unfairness that used to move me to tears now ignites my fire within for more.
More Inclusion. More programs, more resources. More understanding. More acceptance. More opportunities. More actions, less talk. More wrongs made right…
for individuals like my beautiful, autistic son.
When you see how the world really is, when you watch the struggles and challenges that your child faces every day, there’s nothing more that you want than to make those things better, easier or different than what they are facing right now.
This is not a race, it’s a journey. It’s about learning and growing. It’s about encouraging, supporting, and ensuring that your child has what he/she needs to be successful despite their challenges.
You will always be your child’s biggest and loudest fan.
I am almost 5 years in. I have just come into my advocacy voice. I’m not going to give up, shut up or let up….in fact I’m just getting warmed up.
Sleep and autism have brought about big feelings of stress, desperation, anger, blame and guilt for me.
Exhaustion is no joke. It effects every aspect of your life.
In the early days, sleep was pure hell. It was a nightmare that I lived every night with my son. Every night I would put him in bed and I would have to hold him securely in place. He would thrash and scream, cry and kick. Most nights I would cry too. He just couldn’t go to sleep. It lasted 3-5 hours every single night. Each night it seemed to continue for a little bit longer.
What was I doing wrong? Why had no one told me that it was so hard to get a baby to go sleep? When would it get easier? I am a horrible Mom.
These are the thoughts that went through my mind. I had no idea that my son was autistic. I had no idea that sleep problems were common with autism. I had no idea that he couldn’t settle or calm himself down enough to go to sleep like I could.
I would finally get him to sleep and any noise-a cough, a door squeak, rustle of a blanket, a barking dog, the sound of a loud engine driving by,….he would wake for hours. I would hold my coughs or urge to move my arm that had fallen asleep. I wouldn’t drink fluids after 5pm because a trip to the bathroom in the night was risky business.
This went on for months.
Sleep is still a challenge and lacking, I think it always will be. But we are in a much better place thanks to research, strategies, knowledge, maturity, prayers and luck.
We have just entered our 6th sleep deprived year. Some people will never understand that struggle or the daily strength that it demands.
Those dark days of no sleep, hours and hours of holding my son while he teetered on the cusp of being awake and falling asleep were some of my most difficult days. I have never felt more alone or disconnected from him than I did in those 3-5 hours every night in the dark begging and praying for sleep.
Today, the memory of those days and how I felt serve as a reminder…..
A reminder of survival. There are all these moments that you think that you won’t survive but you will.
The forces that were designed to break your spirit will built it-stronger and more resilient.
A reminder of progress, that things do get better.
A reminder of learning, that over time as knowledge grows so does understanding and reasoning.
A reminder of forgiveness, that we are not the cause of all of our challenges and struggles.
A reminder of time, that things may feel permanent or stuck but there is room for movement. Our feelings can blind our view of temporary.
A reminder that new hope rises like a Phoenix from the ashes of struggle, bitterness, anger and self-blame.
We have all heard the saying, “dance like no one is watching”. When we think no one is watching, we dance freely and we forget about everything else in the world. It means being present and not consumed by the expectations of others. When we think some one is watching us our moves are more reserved and we are all too aware, focusing on their view of us.
My son Stalen lives his life every day dancing like no one is watching. I realized that today as I watched him in one of his favourite places on the floor sprawled out in front of the patio door windows with his music. I’m not quite sure if he’s basking in the sunshine or patiently waiting the arrival of our neighbours big lawn Santa. But, regardless he is giggling and squealing with pure delight. He doesn’t matter who is in the room or who is watching. He always does what makes his heart happy.
When I think about it, there are lots of things that I don’t do because of the lack of time, lack of energy or societal norms. I’m often aware of who is in my presence and who may be watching. I want to dance more like no one is watching. I want to get lost in the moment more.
When we go to the doctors office, Stalen doesn’t play with the toys or read the books, he stares out the window enjoying one of the best views of the busiest street in town.
When we travel in the car he brings his headphones and listens to his own music even though we listen to music the whole drive.
We have a Turkey dinner and he prefers his veggie bologenese pasta stars. We have cake and he has crackers, even when it’s his birthday cake. Yet, he is all smiles and happy consuming what he loves.
I don’t think I’ve ever met anyone who is more true to their own heart. When your busy dancing like no one is watching, there is no time to worry about judgements, criticism, or fear of what others may think.
Stalen may only be 6 years old but his lessons in how he lives and loves are well beyond his years. The best lessons are those taught from the heart and seeing immeasurable joy over and over, no words needed.
I think we could all appreciate this lesson to take more time to dance like no one is watching and do more of what makes our hearts happy.
My son Stalen is 4 years old. He was diagnosed on the spectrum at 21 months. He is non-verbal. We struggle every day with Autism and often times people do not understand our struggles or his behaviors.
This week I went on a field trip with my son’s preschool class and the upper class. One of the things that I loved was that the kids were waving and saying good morning to him. They knew he was non-verbal and wasn’t going to respond back but they still made it a point to greet him. They greeted him eagerly and excitedly…it was genuine. It is hard to put into words how I felt in that moment. As a parent to a child on the autism spectrum we hope and pray for friends for our kids. We hope that others will see how amazing they truly are. In that moment, these kids that I had never really met before gave me the greatest gift possible-they made my son feel loved and he mattered. Regardless of any diagnosis, he was included-they affirmed that he belonged with them and they accepted him-just as he is. It was beautiful!
Earlier this week when I picked up my son from pre-school I overheard a conversation between a boy (who is in Stalen’s class) and his Mom.
Mom: I’m glad you had a good day. Son: I made a new friend. Mom: What’s your new friends name? Son: I don’t know his name. He can’t talk. But he’s my friend.
I could immediately feel my eyes well up and I had to quickly get in the car.
These amazing kids see so much more than Autism when they see my son. They see him as the amazing little boy that he is.
There are so many lessons that can be learned from these kids…
Every person matters. Every person needs to belong and be accepted for who they are.
One kind word or gesture-a simple hello, a wave, a smile-can and does make a difference.
People will always remember how you made them feel.
How you make others feel says a lot about you.
Sometimes I see people and I know they may not be sure what to say to us. I can sense that they are uncomfortable Most times in public, my son is moving and stimming fast. It is his way to cope with the world. If they are not sure how to handle this, they may want to avoid us or turn and go the other way. I want you to know…it’s okay if you don’t understand Autism. It’s okay if your not sure what to say to my son when you see us at the grocery store or out in the community. Please just say hi and treat him how you want to be treated. I will do the same thing and greet you and your children pleasantly and respectfully.
Please remember….my son and I are a package deal.
It’s really quite simple-if he doesn’t matter to you then you don’t matter to me!
There are so many lessons that can be learned from the hearts of small children. I’m so happy that I got to see one of those lessons first hand this week.
Stalen's Way 