He is vibrant happiness.
He is the smile of hope.
He is more than any diagnosis, challenge, barrier or obstacle.
In the face of a limit, he is the little boy who could.
I hope that he reminds people of the potential of love and infinite possibility.
That is Stalen’s Way
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.
Forever Boy is officially out today!!!
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.
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 born and raised in the 80s. It was a time of big hair, mix tapes, the Walkman and neon colors. We didn’t hear about autism or inclusion back then. In the small rural high school that I attended, individuals with different or special needs were grouped together in a separate classroom. Our exposure was limited, no one taught us about accepting and celebrating differences. Throughout history and even today, many attitudes still exist that fear those that are considered different.
My experience with individuals with special needs was minimal until my son was born in 2015. I gave birth to a beautiful baby boy, with big blue eyes and a full head of hair. Within the first year of his life, we noticed some concerning behavior and a major regression in language. My son was diagnosed on the autism spectrum when he was 21 months old. Today he is 6 years old, non-verbal and has some comorbid conditions like seizures and gastrointestinal challenges.
There is so much emphasis on fitting in and being accepted, the pressure to be like everyone else overshadows the underlying true beauty of being different.
My son sees the simplicity and beauty in everything. He loves the feel of the wind against his face, how he can make his shadow dance in the sunlight, and gentle squeezes when holding hands. He loves the texture of rocks, to run his fingers along the wall as he walks and to twirl with excitement when he realizes it’s the weekend.
He is all love. While he understands body language and words of others, he doesn’t acknowledge unkind words, judgements or when someone is mean to him. His response to such acts is to smile. One of the most beautiful things is that he only knows love. Sometimes I wonder in awe what the world would be like if we all only knew love, if we never allowed negativity and toxicity to taint our happiness, self-worth, or our relationships with others.
I’m not quite sure how he does it, but he lives every day with a grateful heart. He appreciates all life has to offer him, and that offering is enough for him, regardless of the opportunities life has offered to others. He expresses his gratitude with squeals of delight, eyes as wide as saucers, and a smile that is so bright it puts the sun to shame. This boy of mine was dealt so many challenges, yet he finds the joy in every single day. Despite being non-verbal, he uses an iPad with special software to communicate. His specialty is not asking for his own wants and needs but instead trying to make others smile.
When you spend time with someone who is different than you, it creates an insatiable thirst, a curiosity about how they see the world and how that compares to your view.
My autistic son likes to enhance authenticity by stealing quiet moments like holding your hand and sharing space. He makes everyone feel seen not with his eyes but with his heart. He is energized by that connection forged between his heart and yours. When you spend time with him and you bask in the quiet moments of love, being present and feeling that unspoken connection, renewed optimisms creeps in and you always want more. It revitalizes you so you can go out into the world and do better.
He paints the world with a palette of rich, vibrant colors.
I know that sometimes people feel sorry for me because my son is autistic. But they have no idea how much I have won. I’m so fortunate to have moments of so much love, connection, and quiet moments daily that so many others may wish for. These moments that I get to experience so often, are the reasons that so many others take vacations to escape from the hustle and bustle of everyday life, to recharge and reunite with more meaningful connections.
For most people, parenting is preparing to send your children out into the world so they can pursue dreams and be successful and happy. I’m not certain what the future will look like for us. I’m focusing on raising my autistic son to be independent, to be able to take care of himself as much as possible so he can one day exist in a world without me. I will probably never retire as a mother; my son has made me a forever one.
When others are facing the challenge of sending their son/daughter off to university or college, I will probably be holding my son’s hand helping him to navigate a busy parking lot and assisting him to shave at the bathroom sink. When he is an adult, we will probably watch kids shows and sing nursery songs, do all the things that he loves.
A life lived differently, is not a life less lived. There is no formula for a life well-lived. But I think my son is on to something with how he lives each day with love, gratitude, and purpose. He is not like anyone else. He uses his ability to find and create beauty, shine it onto others and set them out into the world better and brighter than they were before they met him.
Different isn’t just beautiful, in my world it is everything!
We have all met a “pretender”. You know those people who act like they are okay with and accepting of autism. That is until you bring your autistic child around them. The first time that your child gets too loud, flaps too much, they start doing repetitive behaviours, or have a meltdown..you see that the person is not accepting or understanding of autism at all. The acceptance that you thought they had quickly turns to awkward uncomfortableness. They don’t say anything because they don’t have to. You see it. You feel it and so does your child. It’s written all over their face and in their body language. It hurts…when someone is not what you thought they were, especially when it comes to your child.
Sometimes people see differences and they don’t know how to deal. They forget that we are all the same on the inside and require the same things to thrive like love, relationships, and a sense of belonging. Instead they become scared and unkind. This fear may cause them to reject your loved one (and you), perhaps not outright, but in their own way-avoidance, hurtful comments, lack of contact with you, excuses, no more visits or invites.
The pretenders may also make excuses that seem like they are acting in your child’s best interest…..maybe it will be too loud or busy here for today. Last time I didn’t think that _____liked visiting my house. I don’t want to upset __ so I won’t be stopping by.
You can avoid being a pretender by being honest, asking questions and educating yourself about autism. It’s about a willingness to learn and put forth an effort to understand autism, focus on the individual and how autism effects them, and find ways to connect with them. If you have never been around an autistic person and are unsure what to expect or do…ask…..parents are a great resource and we could talk all day about our kids. I love telling people about Stalen and his interests and tips on how to have meaningful interactions with him.
Pretenders miss out on really amazing people. Autistic people are not a burden and they certainly aren’t someone to be embarrassed of, or to avoid being around. The real burden is pretending to be someone or something that you are not.
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.
You have to fall to rise.
Super boy and super pug
When my son was diagnosed with autism at 21 months, I had no idea what I was doing.
It was hard. It was overwhelming.
I wasn’t sure how to deal with his behaviours. We weren’t getting any sleep. He wasn’t eating well. We were in the thick of it.
I was trying to reconcile the unknown, worries, fears, the future, a family, and the reality of the present.
It was too much when combined with all of the regular daily life stuff of laundry, groceries, cooking, chauffeuring, cleaning and errands.
When I think back, I now know that we were in survival mode, white knuckling it as we hung on for a better way.
Even today, we go in and out of survival mode.
But, things are different because of what I’ve learned over the years about taking care of myself. I wish I had learned these things sooner.
I ignored all the talk about self-care when Stalen was diagnosed. I had no time to think about myself as I processed his diagnosis. There was no breathing room in our chaos.
How can you make time for yourself when your child is biting them self and banging their head off the floor and walls?
But, there were little things that I could have done to make things better.
I fell into a spiral of eating fast food and quick processed meals. I was eating to have a meal rather than eating to fuel my body. I started working with a dietician and have learned that there are quick, healthy options that will fuel my body. Proper nutrition helps me feel good and gives me the energy I need to get through the loooooooong days.
I try to walk 30 mins every day. Even on the days that are hell. Fresh air and movement are so good for you. When the weather is good, Stalen gets in his stroller and comes with me. When I’m at home I jump on the treadmill or do a quick online workout video. It could be the worst day ever, but movement always makes me feel better and stronger.
I try to sleep whenever I can. Naps are important too. Never pass up an opportunity to grab 20 mins or to sleep in. Never!
I also try to go to bed early. I’m more of a night person so this is hard so sometimes I go to bed really early one night a week. Sleep is so important!
Find an interest outside of your child’s diagnosis. I love to watch Netflix and reality tv. In the spring/summer I like to run and garden. So much of my time is dedicated to my son’s care, it’s nice to have interests that don’t involve autism or his cecostomy. It’s healthy not to spend all my time researching tools, approaches and treatments.
It’s so important to find friends who understand raising a child with a disability and complex medical needs. It can be very isolating and difficult to physically attend play dates or meets ups with friends. I have found so many wonderful friends online who have been such a great support to me. There are no expectations and you don’t have to leave your house.
Remind yourself that you are human and that you are doing a good job. Social media is very one sided so don’t compare yourself to others or think they have it all together. Don’t wait for praise from others to validate yourself.
No matter where you are on this journey-whether your just starting out or years in-you must be kind and forgiving to yourself. No one is perfect and no one has it all together.
You will never speak to anyone more than you speak to yourself so make those words kind, encouraging and supportive.
Autism is lifelong. There is no competition. It is not a race, it is a journey so take care of yourself!
Without any hesitation I can say that my son has made me the mother I am today.
He has made me strong and brave as he has allowed me to come along with him as he faces his challenges in the same way.
He has increased my awareness that everyone is beautifully different and capable.
He has helped me to find the joy in each day.
He has shown me an appreciation for the simple things.
He has taught me the importance of kindness,
patience and understanding.
He has shown me that words and actions do matter, especially those directed towards someone else.
He has taught me that there is more than one way to communicate and more than one way to do most anything.
He has taught me that it is okay to have hard days and bad days.
He has shown me the power of hope, love and positive thinking.
He has taught me that you can still go through hell and smile.
I’m an improved version of who I once was.
He has made me better. He pushes me to be the best version of myself every day.
I read a quote recently and it said,
“ men are what their mothers made them”.
But, that’s not the case for us.
Stalen's Way 