Severe Impairment

The words never get easier. They sting across my face as I read them, transcending from my eyes to my lips.

“with severe impairment”

There they are written as though they mean nothing and everything. The words that bring supports and services and perhaps an explanation that may present an increased understanding from the outside world. We see these words in reports, on assessments, in textbooks and in applications. They are rarely spoken outright because they imply huge limitations.

Yet, give him an iPad and he can tell a funny joke, trace letters, count, make a playlist and text it to me, purchase an app, send a text and ask for a piece of granola or a foot rub please.

It’s kind of like a sunny day. You can tell someone it’s sunny but that doesn’t describe the entire day. They can’t feel the warm heat of the sun, taste the lemonade that quenches your thirst or hear the laughter of kids playing in the sprinkler nearby.

You can’t tell an entire story in just a word or a single chapter.

Severe impairment may imply limitations but it doesn’t do any justice to describing the little boy that I love and adore. Stalen is funny in the coolest way. While humor may come naturally to many of us through our words and actions imagine how difficult it is to be funny when your non-speaking and have major gross/fine motor delays that affect your ability to complete some body movements and tasks. Yet, he is undeniably funny. He is also charming, kind, loving, adventurous, and handsome with the best laugh and hugs.

Stalen rises every day beyond the limitations imposed by conditions and a diagnosis.
These words “severe impairment” are only limiting if we believe and allow them to be.

While limitations may exist in the mind and on paper…..

there are no severe limitations of the heart.

Every beat is an opportunity for love and a pulse for great potential. His rhythm is one of love, joy and purpose to spread good in this world.

So, let this be another chapter in the story of the little boy who rises above and is more than any report, assessment or textbook definition.

As always, don’t judge a book by its cover or someone’s story by the the chapter you walked in on …

Dance for you!

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.

Dance for you!

The Divide…

There is much division in the autism community. It saddens me beyond measure because I thought we are all working towards the same goals-awareness, acceptance, inclusion, kindness, understanding, and increased opportunities for autistics.

If we all arrive at the same destination does it matter how we got there? It seems so. If you don’t travel one specific way you may be an outcast, attacked, shamed and even in some cases threatened.

In preparation for world autism awareness day, I got out my son’s AAC device opened up his colors board and asked him what color should we wear and HE CHOSE blue. It was no surprise because blue is his favorite color. If he had chose yellow or purple we would have worn those colors. Next year, I will ask him the same question and we will support him by wearing what color he chooses.

So, here’s the dilemma….

Some autistic individuals are against wearing the color blue because of its affiliation with Autism Speaks. I was so worried to post pictures of my son smiling in his blue shirt for fear of backlash or being attacked. But, I posted it anyways because his voice matters most to me and I will never allow anyone to silence him. He’s worked so hard to be able to express himself and make choices.

I’ve always tried to be fair and to listen. I love to learn and to hear the perspectives of others, in doing so it opens your mind to potential, possibility and diversity.

I’ve been saddened to hear that individuals outside of the autism community who are becoming aware of autism and who posted about autism this month (to show their support) are being attacked because their post may not have the right language, may include a puzzle piece or the color blue. In my view, these attack are a major setback for all of us and what we strive for.

We need conversations about Autism. If people are getting attacked because of it then everyone will just steer clear of all of us.

Every attack, every fight is a step backwards in our journey towards acceptance and inclusion.

It’s not the message but the method of delivery. We need to disagree respectfully.

Where is the respect in the autism community?

I hope that the divide shrinks and the autism community becomes one of pride, love, respect, hope and acceptance. I hope it becomes a place where diversity in thought and perspective isn’t just accepted but empowered and welcomed.

One community. One love.

A place where parents, professionals, and ALL autistic individuals can support and embrace each other, even if they support conflicting ideas.

I have no problem extending my hand to someone wearing blue, sporting a puzzle piece, an infinity symbol or all 3. My son will also be tolerant of the symbols/colors that others use, even though he may disagree and use something entirely different.

I want my son (and myself) to be proud members of a vibrant autistic community.

A community that chooses education over destruction.

A community that chooses kindness over hate.

There is no right or wrong way when it comes to autism, but many ways to reach a desired outcome, goal or perform a task.

I will continue to listen and support my son on this journey as I always have. I will continue to focus on him as a person, not on the symbols, colors or words he may choose to represent himself.

There is room at our table for different perspectives and diversity- no matter how you got here.

I see you, I welcome you and I’m glad that you are here.

What I Wish People Knew…

I wish that people knew that assumptions and judgements get you nowhere.

I wish that people knew that not all disabilities are visible.

I wish that people knew that Stalen and other autistics are amazing people. I wish that people knew to look beyond the surface and see their true value.

I wish that people knew how to be more inclusive. Stalen just wants to be included, to belong and have friends. I wish people knew how important an invite or a gesture of friendship is for Stalen and our family.

I wish that people knew that their actions, their words and speaking without thinking, can be so hurtful and damaging.

I wish that people knew how hard my son works to be able to do things that they may take for granted like climb stairs, use a fork, speak a word, get a haircut, go into a public place.

I wish that people knew that kindness matters-every smile, every “hi”, every kind word, every friendly gesture-can be warm sunshine on an otherwise cloudy day.

I wish that people knew that our world, our systems, our institutions, are built upon the idea of sameness and similar needs. It is incredibly difficult and challenging for those who see and feel the world differently and who have different needs.

I wish that people knew to always be themselves, to always shine bright.

Time

This picture was taken in April 2017 only 3 short months after we received Stalen’s autism diagnosis.

When I look at myself in this picture I can tell we were in the thick of it. In the midst of hard and processing his diagnosis, while not knowing what that would mean for Stalen, his future or our family.

Change is hard. Unknown change is scary.

But, I also see a little boy who is happy and smiling. A little boy who loves life and loves being next to his Mom.

I see a Mom who loves her son and is trying hard even if she doesn’t know exactly what she’s doing.

Today, he’s still that same little boy and I’m still that same Mom. The only difference is that we are a better version of ourselves.

Time has passed and while there is still unknowns about the future we are no longer scared.

The last few years have shown us that our boy is strong, smart and capable. He has made so much progress and is consistently crushing the goals we set for him.

Time allows for experiences, celebrations and struggles, learning, acquisition of new skills and the strengthening of existing bonds.

Time makes us better.

It allows us to grow into the people we were destined to become.

Time allows for us to get stronger as we weather storms, but it also allows us to increase our stocks of hope and faith.

Time allows us to bask in the sunshine and see the rainbow of joy after an intense downpour.

We are now at a place of understanding, acceptance and embracing autism. We know and understand more about autism and Stalen continues to teach us every day.

I’m excited to see how we continue to evolve, adapt and overcome into the future.

Happy 6th Birthday Stalen!

Happy 6th Birthday to our amazing, sweet sunshine boy!

He is so excited that we are celebrating him today in Buzz Lightyear style!

He has the BEST smile that easily lights up the room and he works so hard every day. He continues to rises to meet every single challenge that comes his way. Impressively, he climbs the steepest mountains, all while smiling.

My wish for his 6th year is that he continues to know that he is loved beyond measure, that his overall health becomes more stable and that he continues to always be himself and shine his bright light.

Happy Birthday Stalen, may all your birthday wishes come true.

We love you to infinity and beyond!

Holidays are hard

Holidays can be very difficult for children with special needs and their families.

We often don’t see the excitement and enthusiasm from our kids, that others may see from theirs. Many of our kids need their regular routines and when we deviate from that for holidays we see anxiety, aggression, meltdowns and all the hard.

Our holidays do not look the same as everyone else’s. Sometimes these days are about surviving rather than celebrating.

The noise, excitement, gathering of family and friends can be too much for kids like Stalen.

Fancy dinners prepared with love can’t compete with the usual favorites. I am cooking a Turkey dinner today but Stalen will have his usual pasta stars and crackers.

Even though we had a great Easter morning, our day can quickly switch to total and complete chaos. Our Easter lasted about 20 mins., which was about 17 mins longer than previous years. Everything is already put away so Stalen can have his usual day that he desperately requires and needs.

I’m thankful for those 20 mins of Easter that he gave us this morning. I’m thankful for those that try to understand that our holidays are different and can be difficult.

I’m thinking of other special needs families like ours, who may be struggling with the day.

♥️We see you.
♥️We love you.
♥️The sun will shine again. ☀️

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 and baby purée now.

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.

And just like that, this year he touched the cake renewing the hope and effort of the bunny cake tradition.

Are you Autism Aware?

Are you autism aware?

Autism spectrum disorder (ASD) is a neurological disorder characterized by challenges with social skills, repetitive behaviour, speech and non-verbal communication, as well as by unique strengths and differences.

No two people with autism are the same.

If you haven’t already, you and your family will come in contact with someone with ASD at school, work or in the community.

(In 2018)1 in 66 Canadian children between 5-17 years old on the spectrum.

Awareness and education are essential to acceptance!!

Choose Love
Choose Kindness
Choose Inclusion
Choose Understanding
Choose Acceptance….EVERYTIME!!