Stalen’s Joke of the Week

Hope vs Reality

Here I sit, in a familiar place. In little over a month Stalen, my sweet baby boy will be turning 6. Just like all the other birthdays, it’s bittersweet. I can’t wait to celebrate Stalen turning 6. I can’t wait to see his face when he sees the special cake that I’m having made for him and how his eyes will light up when he sees the balloons. But, there is a thought that is always there and always looming. Each passing year is another year without language. It’s another year where the statistical likelihood of language drops and the possibilities become slightly murky.

You see I find myself teetering-swaying back and forth between hope and reality. Each is pulling me towards them but I can’t decide which direction to go in. I need to have them both in harmony but sometimes Autism does not allow that. Autism tries to steal every last ounce of hope with meltdowns, regressions and comorbid conditions.

It’s so hard to balance the hopes I have for my son in conjunction with the reality that we live every day. It’s always a battle between an optimistic future and the daily grind.

I will never let Autism steal my hope. I hang onto it with a grip tighter than I have ever clenched anything between my fingers before. Hope is the driving force that fuels my fight, my advocacy and gets my through those hard days.

My son is my everything, my most precious passenger on this wild ride, and hope is securely buckled in the back seat. I take it everywhere with me.

It’s the beacon guiding me in the distance during the storms.

It is the anchor that keeps me floating in place when the sea rises and falls.

This place I sit is a temporary rough spot not a permanent destination. I will choose to be aware of our reality but I also choose to believe that things are possible, even when I don’t know how or when they will happen.

He’s my friend. He can’t talk.

One of the most beautiful conversations I’ve ever overheard was between a mother and her child (who was in Stalen’s class) at preschool pick up.

Mom: I’m glad you had a good day.
Child: I made a new friend.
Mom: What’s your new friends name?
Child: I don’t know his name. He can’t talk. But he’s my friend.

I was meant to overhear that conversation that day. We often receive signs when we need them most.

It was a small preschool, I knew instantly that this child was talking about Stalen, my non-verbal autistic child.

That conversation planted a seed of hope. The hope that my son will make many friends who are accepting, loving and compassionate.

I saw so much possibility and potential in those words that day. Sincere words that were soaked in freedom from attitudes and abilities.

I continue to wish for a world where friendships are forged when a person knows all about you, but still loves you. As simply expressed in the words of a 5 year old, “I don’t know his name. He can’t talk. But he’s my friend.”

Make those moments special

Children need a minimum of 8 touches a day to feel connected to a parent.

If they are going through something challenging then they need 12 a day.

There are 9 minutes during the day that have the greatest impact on a child:

👉The first 3 mins right after they wake up
👉The 3 mins after they come home from school
👉The last 3 mins of the day before they go to bed.

Let’s make those moments special and ensure that our kids always feel loved no matter what. ♥️

There is no room for shame

About two years ago my son and I were waiting in line at Walmart. He was sitting in the cart happily flapping and stimming as we waited. A lady waiting in line behind us started talking to him. When he didn’t respond I explained to her that he was non-verbal and on the autism spectrum. She immediately proceeded to thank me and tell me how great it was that I wasn’t ashamed to bring him out and about in the community.

I will never be ashamed that my son has autism. It’s one of the many parts of him that contribute to making him the amazing little boy that I love and adore.

No one could ever take over the space in my heart that he fills with his spins, squeals, smiles, jokes and flaps. These things are mixed in amongst deep love, hope and faith.

There is no room for shame here.

I’m not ashamed of autism and you shouldn’t be either because it’s not about a diagnosis.

It’s about the person.

My son brings so much more to this world than autism. He is smart, funny, charming, handsome, witty, kind, brave, loving.

I would hate for anyone to miss out on the positive bright light that he shines because they are consumed by the negatives.

Don’t miss out on something that could be amazing just because it could also be difficult.

Autism may look hard and challenging on the outside.

But, HE lives it every day from within.

Why would I punish him with shame for a life circumstance that he has absolutely no control over?

I will always take my son into the community.
I will always encourage and support him.
I will always hope for progress for him.
I will always advocate for him.
I will always walk beside him.
I will always be his dance partner even when there is no music.
I will always ensure that he is treated with respect and dignity because he is a human being and deserves to be treated as such.

As I watch this bright, brave boy climb mountains and shatter nevers, I feel nothing but pride and gratitude because he’s mine and I am blessed beyond measure to be his Mama.

Be kind

We all know how it feels when someone is mean to us. I don’t wish those feelings on anyone.

I’m raising my son to be kind because kindness feels great. One small gesture no matter how small can change someone’s entire day and make a big impact. We can all remember someone who was nice to us, who made us feel valued and included. I wish that feeling for everyone.

Bullying is lasting trauma that scars our mental health forever. It doesn’t matter where the bullying occurs or who it involves-it is wrong!

Bullying is never ok. It is never justified.

Bullying is ugly.

I’m teaching Stalen to smile and wave, to take turns and share. I’m teaching him to love, how yo give, how to look for the best in everyone, how to tell jokes so he can cheer others up.

Kindness starts at home.

Kindness is free.

Kindness is sunshine. ☀️

Kindness is caring for others, even when they may not care for you.

Kindness is making a difference.

Kindness is cool. 😎

Kindness is spreading visible love.

Kindness is my jam!

#kindnessismyjam #pinkshirtday

#standup #speakout #beafriend

#autism #inclusion

Who do you advocate for?

I advocate for Stalen.

I advocate for all children and their families.

Requires Full Assistance

Requires full assistance….

It’s a sentence that I’ve written many times over the last few years as I completed forms and paperwork. Even more so now as I am in total school prep mode because my boy will be going off to school soon enough.

I’m not bothered by those words “requires full assistance”. They have no bearing on his intelligence, sense of humour, kindness, his big heart, or the love he gives. They have no bearing on his value as a person or the joy he brings to my world.

These words will allow me to set my son on the right path for success. I don’t want him frustrated in the cafeteria because he can’t get his food opened, I don’t want him crying in the hallway because he can’t get his boots on to go play outside, and I don’t want him upset in the classroom because he can’t use the scissors or open the glue.

He is brimming with potential. Full assistance will allow Stalen access to full opportunities.

It’s not about the words or how I feel about using them to describe my son’s ability to perform certain tasks.

I don’t see these words as a limit but as tools, just like his IPad with special software, and his cecostomy tube. They are tools that will compliment what he can do but give him assistance with what he can’t YET do.

What’s age appropriate?

Today, I smiled when this new bath toy that I purchased for Stalen arrived. I smiled because it said on the packaging that it was for age 18 months even though my son is turning 6 soon.

I smiled because we have come so far on this journey. There was a time when I would have worried about what others would have thought. I would have talked myself out onto a limb for not buying age appropriate toys.

But, those days are long gone. None of that matters now. All of those thoughts are gone in the wind.

Over time I’ve learned what really makes my son happy. It’s lights and soft music, it’s crackers and smiley face stickers. It’s letters and numbers and tight hugs. AND it’s having a mother that understands and accepts who he truly is regardless of all else.

It’s about encouraging his light to shine bright without feeling the need to hand out sunglasses.

I live for his smiles, squeals and eyes that glimmer with magic.

It’s not about the numbers on the box, or the limits we set in our minds. But, about true happiness that radiates from the soul. True happiness blossoms when we are loved and accepted for exactly who we are.