Loving Life!

Stalen is living his best life and loving his new pool.

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A Wish…

We often send people well wishes. We wish them health, happiness, success, luck in love, and many other wonderful sentiments.

I wish those things to many of those that I love and care about. But today as I wheeled Stalen through our neighborhood and saw his arms moving to the song of the wind, his squeals of pure joy and delight, I thought of this wish….

I wish everyone could experience the pure ecstatic joy that Stalen feels every time the sun shines on him and the wind hits his face at just the right angle with a tickle of bliss. The immeasurable appreciation and enjoyment of simplicity and rich gratitude to be alive.

I wish that for everyone…

The Buddy Bench

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.

Six Years Later

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.

Stalen Graduates!!!

Oh, the places you’ll go!

I’m so proud of my boy!!!!!

He “graduated” kindergarten!

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.

Noah Bear

Stalen and I want to share one of our new favorites, “Noah Bear” by Dave Lawrence. We had so much fun reading about a day in the life of a young bear with autism. Stalen smiled when he realized that he and Noah Bear have lots in common. I know he enjoyed reading about a character just like him.

This book is a gem! Its sweet rhymes make it fun for the beginning reader or for the whole family to read aloud.

The story of Noah Bear is insightful and can be appreciated by readers of all ages. It teaches us about many of the misunderstood behaviours and challenges that come with autism, which often overshadow the kind, caring and good intentions of an autistic trying to deal with the world.

Stalen and I highly recommend this book as a story to teach everyone about autism and the importance of embracing and celebrating our differences. We are also happy to support a local author and look forward to more adventures of Noah Bear!!!

You can find Noah Bear on Amazon! #noahbear #autismawareness

Bunny Cake Tradition

The bunny cake tradition….

I’m not really sure why I started this tradition. At first I thought it was a fun way to show Stalen’s physical growth year over year.

But, now I know that it was so much more than that.

The bunny cake has become a concrete example of hope and effort.

Each Easter I buy a bunny cake for a little boy who doesn’t eat cake. He has a very limited diet which only includes eggs, a baby purée and g-tube feeds.

It’s not a symbol of what he can’t do but it’s a symbol of hope for what he may do one day.

Some day I know he’s gonna want to taste the cake but each year we will try again until HE decides that he’s ready.

Each year I will provide the cake and he will make that choice. I will follow his lead.

When and if he decides he wants some bunny cake, I will be ready. I’m always preparing for those “you never know” and “just in case” moments.

As a parent to an autistic child, I have learned that this journey is one of lots of hope and effort.

It is these two ingredients that have watered the seeds for the greatest growth.

I will always continue to hope and put forth the effort because progress never comes from just standing still and great things take time.

While the photos may show a physically growing boy, they don’t show all the other areas of him that are experiencing growth too.

There’s also a Mama behind the camera that’s growing every day as she learns more and more about her boy and how he sees the world.

Each year with renewed hope we look forward to the bunny cake tradition! 🐰

What does Autism Awareness/Acceptance mean to me?

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.