Don’t be sorry.

When I tell you my son is autistic, please don’t say “I’m sorry.”

“I’m sorry” feels like there’s something wrong with him.

Something that makes him less than.

Something that I too, should be sorry for.

But I’m not.

I’m not sorry he has autism.

I’m not sorry he stims and flaps his hands and makes loud noises.

I’m not sorry he jumps up and down when everyone else in the room is quiet and calm.

I’m not sorry that he prefers to line up toys or play by himself sometimes.

I’m not sorry we have to decline party invites or leave early when he’s overstimulated.

Do I wish things weren’t so hard for him?

Absolutely.

No parent likes to see their child struggle.

But what I’ve learned over the years is to and focus on the things he CAN do and everything he has overcome.

We embrace the differences and celebrate all the things that make him unique.

Things that make him happy.

Things that prove his resilience and strength.

Our son is not defined by his diagnosis but it is a very large part of who he is.

His quirky little facial expressions.

His ability to see the beauty in the simplest of things.

His amazing personality and a smile that lights up an entire room.

His way of seeing the world differently and teaching us to enjoy the little things in life.

His way of saying I love you without speaking a single word.

There is so much joy when we stop listening to the expectations of who our children should be or how they should act.

Children of ALL abilities, regardless of a diagnosis, are worthy of our love and acceptance.

They don’t need people to feel sorry for them.

Or for their parents.

And it’s time we start changing that.

Be kind.

Be empathetic.

Be supportive.

Be compassionate.

But please, don’t be sorry.

We closed out autism awareness and acceptance month by presenting to my son’s class today.

We started our presentation by reading the story My Brother Charlie by Holly Robinson Peete.

We talked about what autism is and shared a video of what it can feel like being autistic.

The class listened so intently.

They were engaged and eager to learn.

They asked thoughtful and meaningful questions.

We had an open discussion and Q and A for them to ask any questions they’d like.

Ethan’s twin brother joined in as well to share what it’s like to have a brother with autism.

The three of us answered their questions, shared our experiences and talked about how to be a good friend.

As we were finishing, the kids in his class started writing on their white boards and holding them up to the camera so we could see.

“Ethan is awesome!”

“Ethan is a rockstar!”

“Ethan is unique!”

“We love you Ethan!”

“You guys rock!”

I couldn’t hold back the tears watching these amazing kids show their love and support for our sweet Bubba.

This group of 4th graders are so special and truly remarkable.

Ethan was smiling ear to ear and would say “thank you” when each child held up a white board with a special message.

This is why it’s so important that we have these conversations with young children.

To provide a safe space to have open communication, talk about acceptance of differences and the importance of inclusion.

When they learn this at an early age, they grow up with love and kindness in their hearts.

In a world filled with so much hate and judgement, we can learn a lot from these kids.

Be compassionate.

Be a good friend.

And be kind.

Always.

UPDATE❗️

What a week!

We have SO much to celebrate after receiving a unanimous vote from the International Code Council in support of adult changing tables in family restrooms.

These changes will be made to the building codes starting in 2024.

So what does this mean?

Building codes get updated every three years and that’s why this is not an immediate change.

We asked for powered height adjustable adult sized changing tables to be installed in family restrooms.

We are still in the process of figuring out the specifics of every place that will be required to have a universally designed changing table.

Until this fall when the final adoption occurs for the I-codes, we won’t know exactly.

Our goal is to have as many large venues, public buildings and places in the community as possible.

We recognize that not every single public place will have one, but this is still a HUGE WIN for millions of families across our country.

Even if this doesn’t effect you or impact your family at this time, one day it could.

We are all one accident, injury or illness away from needing something like this for ourselves or a loved one.

There were so many amazing parents, caregivers and self advocates that helped make this possible and I’m grateful to have been a small part of it.

We had a powerful impact on everyone who listened to our personal stories and why these changes are so important.

I’m grateful that our voices have been heard.

WE did it!

I will be sure to keep everyone updated as I know more information and the specific places that will be included in the building codes.

This has been years in the making and now we have to be patient with the process.

Hang in there friends.

Change IS coming.

2 minutes.

That’s how long I have to share our story and talk about why universal changing spaces are important.

2 minutes to testify on behalf of hundreds of thousands of families who would benefit from adult sized changing tables in family restrooms.

Today is the day my friends.

In the next few hours I’ll be testifying at the ICC hearing in support of making changes to the building codes.

These changes are specifically talking about installation of powered height adjustable adult sized changing tables in restrooms.

These are federal building codes so these changes would impact our entire country.

If things go well today, it will still take time for this to pass and we wouldn’t see the changes written in the codes until 2024.

But friends, THIS IS HUGE.

If passed, there will be more inclusive and accessible restrooms across our entire nation!

That is LIFE changing for families impacted by disabilities, injuries, chronic health conditions and more.

I have a full speech prepared and tried to get in as much as I possibly could for a 2 minute time limit.

Trust me, I could go on for hours about the importance of this.

But, I’m hopeful and confident that this will shine a light on this very important issue that impacts so many families.

If you could send some positive vibes my way and a little bit of luck, I’d greatly appreciate it.

We are in this together.

It’s time for change.

That question is on my mind every single time we leave our house.

When he has an accident, where will I be able to clean him?

Our son is almost 10 years old and weighs over 100 pounds.

Do you see what the sign says in the picture?

MAXIMUM weight is 35 pounds!

Needless to say, my son is too large for a baby changing table.

I have changed him in the back of our car in busy parking lots while people walk by.

I’ve had to lay him on a beach towel, on the FLOOR, and clean him.

And to everyone who will say “change him standing up” – it’s not that easy. Without going into graphic detail, let’s just say not all messes can be cleaned while standing.

Please note, some individuals aren’t physically able to stand to be changed.

We’ve also had to leave him soiled until we return back home.

There are THOUSANDS of families doing these exact same things every single day.

NO HUMAN BEING should ever be layed on a public restroom floor.

Our loved ones DESERVE better.

They deserve HUMAN DIGNITY just like everyone else in the world.

This is why it’s so important to keep advocating until we have INCLUSIVE and ACCESSIBLE restrooms across our country.

Our proposed bills in different states hope to include these tables in highway rest stops, hospitals, sports arenas, amusement parks, airports, and museums.

PLEASE use this as a learning opportunity and share how important it is for public places to have universally designed changing tables.

Baby changing tables are for BABIES.

Universally designed changing tables are accessible for EVERYONE because they are 6 feet long and hold up to 400 pounds.

Powered height adjustable adult sized changing tables also give care givers the ability to transfer safely without lifting their loved one onto a fixed height table and risking injury.

There are hundreds of thousands of individuals with different abilities and chronic medical needs of ALL ages that require assistance in the restroom.

My son being one of them.

It’s time we start making human dignity a priority.

It’s time for our voices to be heard.

IT’S TIME FOR CHANGE.

Give yourself grace.

Yes, I’m talking to you Mama.

Didn’t get everything checked off that long to do list today?

Give yourself grace.

Late dropping the kids off at school again?

Give yourself grace.

Clothes fitting a little tighter than you’d like them to?

Give yourself grace.

Forget to call your friend back or respond to that text from three days ago?

Give yourself grace.

Friends, I think most of us are still living in survival mode.

And one thing I know for certain, is that we are all doing the best we can.

So if you forgot to pick up the item you needed for dinner tonight or you didn’t get to the laundry piled on top of your bed.

It’s OK.

Maybe you’re being pulled in a million different directions and feel like you got nothing accomplished today.

If all you did today was survive, I’m proud of you.

And you should be too.

It’s not worth beating yourself up over little things that will impact your mood or mental health.

Life is too short to constantly tear ourselves down and worry about things that take away our joy.

I think it’s time we start being a little more gentle with ourselves, don’t you?

Promise me tonight that you’ll try.

That you’ll lay down that heavy weight you’ve been carrying around all day.

And let it all go.

Inhale peace and exhale everything that’s weighing on your heart and mind.

And give yourself grace.

7 weeks.

That’s how long it’s been since this sweet boy was able to play outside in our yard.

Something scared him outside of our house and he’s been too scared to play outside since.

If we go somewhere else and we’re outside, that’s ok.

It’s here.

Our yard.

One of his favorite places to be.

So to see him terrified to go outside and trembling with fear broke my heart into a million pieces.

We’ve been trying to help him through it and nothing was working.

Literally nothing.

After talking in length with his therapist about our concerns, she did something amazing.

She showed up today with a bounce house.

Yes, you read that correctly.

She showed up with a huge bounce house, including the extension cord.

Talk about going above and beyond right?

He was a little hesitant, but after he finished his work, she asked him to play with her outside in the yard.

And out they went!

I couldn’t believe it.

He smiled.

He laughed.

He played.

And he was HAPPY.

My heart was exploding!

I hope this is the first step in the right direction to get him feeling safe in our yard again.

I pray it continues to get better and better every day.

Because we miss seeing his happy face and hearing his silly giggles playing with his brother outside.

Here’s to many more joyful moments and having fun in our yard!

• Note – His therapist owns the bounce house and is letting us borrow it. She’s absolutely amazing and we’re incredibly grateful for her *

Welcome to our world
Come in and take a seat
What you’re about to see
Is something amazing and unique.

You’ll experience highs and lows
With a few outbursts in between
It will be a little surprising
Like nothing you’ve ever seen.

We do fist bumps and stomping
And redirection like a pro
We do happy dances for everything
No matter how fast or slow.

We do stimming and hand flapping
And lining up toys
But don’t blink for a moment
Or you’ll miss all the joy.

We do lots of love
And wiping of tears
Acceptance is key
Let it wipe away your fears.

We laugh and we play
And make up silly games
Years of creating
I can’t remember all the names.

We do therapies and appointments
Like it’s just another day
It may seem kind of busy
But it’s been life changing all the way.

We do talkers and sign language
And picture cards each day
And If you really listen closely
You’ll hear he has a lot to say.

We advocate and teach
And we’re learning as we go
Hope always fills our hearts
And is forever in our home.

We do adaptive sports
And sensory friendly shows
Headphones and hand fidgets
Everywhere we go.

We try to call ahead.
We try to make a plan
Day in and day out
We do all that we can.

We do big squeezes
And hugs that will melt your heart
One smile from our Bubba
And you’ll never want to part.

I hope you’ve enjoyed your time with us
And liked what you’ve observed
My wish is that you’ll stay awhile
And welcome to our world.

It’s here.

April is Autism awareness month, or as some say- Autism acceptance month.

For me, I think it’s ok to say both.

You see, without autism awareness, how can we have autism acceptance?

People don’t know what they don’t know.

Until our son was diagnosed, I knew very little about autism.

I’m far from an expert and I learn from our son every single day.

I’m also learning from autistic adults and listening to their stories.

Learning from their lived experiences and the impact it had on them growing up.

As a parent of an autistic child, the autism community can be overwhelming sometimes.

The division I see is upsetting and hurtful.

How can one person or small group, speak for an entire community?

EVERYONE in the community deserves to have a voice and speak their truth.

I believe we ultimately all want the same things.

Acceptance. Inclusion. Equality. Kindness.

In a world that is filled with discrimination and judgement, wouldn’t it be nice to try something different?

To flip the script of constant comparison and judging parents and replace them with words of encouragement?

My hope for today, and every day, is that we can advocate TOGETHER as a community.

To champion side by side inspiring people to embrace differences.

To respect one another, even when we have different opinions.

To have open conversations about the hard things and be mindful of each others feelings and beliefs.

There shouldn’t be a “my way or the highway” mentality when it comes to discussions about autism.

This community should be a safe space for autistic individuals AND parents.

There’s enough room at the table for all of us.

To share our different journeys and learn from one another.

How can we expect others to be kind and accepting of our autistic loved ones if our own community tears each other apart?

We’re on the same team my friends, and it’s time we start acting like it.

Let’s be the change we want to see in this world.

So that one day, this harmful division is a thing of the past.

And we can finally be a community of strong self advocates and parents that work together.

A community that my son will be PROUD to be a part of.

The unsung heroes.

As a mom of three during a global pandemic, I’ve heard those words many times in the past year.

While I appreciate the compassion, I think there should be more emphasis on our children.

To the kindergartners with cute little backpacks who were excited to attend school and play with their friends at recess.

To the elementary students who were looking forward to getting their favorite teacher this year and sitting next to their best friend in class.

To the students who have been virtual learning and still trying to navigate online google meets instead of sitting in a classroom with their peers.

To the disability community and special education students losing supports they desperately need and fighting for services in a broken system.

To the Highschool seniors who have dreamed of this year their entire childhood and it’s been torn apart by social distancing and schools being closed.

To all of our children and youth navigating through this pandemic for the past year, I’m sorry.

I’m sorry you’ve had to endure these troubling times and been expected to carry on with interrupted schedules and academic stress.

I’m sorry that we, as your parents, don’t have all the answers or solutions to the many issues that arise.

The truth is – we’re learning, just like you.

I’m sorry your world has been flipped upside down and turned inside out.

I can’t imagine how difficult this has been on you, physically and mentally.

You have sacrificed so much and have missed out on childhood memories that should have been made during this time.

I pray you find the strength and courage to keep going.

Because whether you think so or not, you are doing an amazing job.

You have survived a very unconventional and difficult year.

Your strength and perseverance has been encouraging to see during a time of chaos and disarray.

On behalf of myself and every parent out there, WE ARE PROUD OF YOU.

You have been living in a world of uncertainty and constant change and have handled it better than most adults.

Every single one of you deserve to be recognized for your resilience, dedication and strength.

And in my opinion, YOU are the true unsung heroes.