Listen With Me

I want so much for this boy, above all, to just be understood.

I don’t care if he finds his voice through a device, or a drawing, I just want him to be heard.

A boy who was built differently than most.

Whose words get lost while intention and thoughts remain.

One who fights daily to just be calm in his body and peaceful in his mind.

His favorite color is red, though he’s never once told me this. I just know.

I also know that he’ll tolerate wearing blue, but only on some days.

Sometimes the world is too much for a boy who feels everything.

So, we’ll have to change the world.

He listens, even when he doesn’t respond.

He knows, even though he may not say.

I want his laugh to be shared and his efforts to be acknowledged.

This boy who jumps and jumps to share the pure joy radiating through his body.

I want people to see that.

The jumping and the joy.

The resilience.

The blue shoes.

Being his mom means listening to a million things that are not said. Or trying to.

I am trying to listen.

Please, try to listen with me.

I share this boy with you

I share this boy with you because he is unique.

He is a constant reminder for me that every single person I encounter is so much more than meets the eye, and maybe he will remind you, too.

While I don’t ever want to miss an opportunity to celebrate this amazing boy, I also choose to share some of his challenges, progress, joy, and everything in between.

I do this because it isn’t enough for people to just know that autistic people exist.  I want the world to understand the vastness of this spectrum including the behaviors, abilities, needs, challenges, and beauty in all people who live with autism.

I want people to learn about and celebrate differences.  When someone looks, sounds, smells, and behaves differently than you, how wonderful of an opportunity you have to learn from them!✨

When you meet someone like my boy, whose brain may work differently than yours, it may take some time and patience to understand the contradictions weaved throughout his daily life.

How someone as wild and free as the wind can also feel as caged as a bird; with words, thoughts, and feelings often trapped inside of him.

How he needs predictability and order like his sandwich cut a certain way, the same clothes daily, and to constantly see his schedule, but this same boy loves speed, spinning, and falling just to the edge of out of control.  I think all of this is how he feels safe but also feels ALIVE. ✨

I spent a lot of time trying to untangle all the contradictions inside of this sweet boy, like it had to be one way or another. It doesn’t. He is not something to be untangled or fixed, just understood, supported, and included.✌🏻

This blue-eyed boy finds JOY ✨ everywhere, and the best part is, he helps others see it too. I hope you get the chance to know him, or someone as uniquely wonderful.

Pictured: getting cozy at a photo shoot for our kindness/inclusion centered apparel brand, Little Rebels with a Cause 😍

LittleRebelsCause.com

A Very Merry Season

I was wrapping presents last night when I came across one designed for children 3-5 years old that I had purchased for my eight-year-old.  It got me thinking about how we do things a little differently around here.

Throughout the years, we’ve found that not every holiday event is one we should attempt.  Occasionally we get a sitter for the outings that we know Wilson cannot tolerate so his sister still has the chance to go. Sometimes we leave early, or we arrive late. And sometimes we buy toys designed for toddlers because we know how happy they will make him.

This year, we were all able to go on a holiday train ride to see the city lights. We even saw Santa and Mrs. Claus, and Wilson did amazing. He loved every minute of the ride (beyond the wait to board the train.)  This was huge progress for him, and something we wouldn’t have attempted just a few years ago.

I don’t share this for any kind of “I’m sorry” or what not. The fact is that we don’t lack any JOY around the holidays while doing things a little differently. I wish everyone could FEEL this season the way that Wilson does.  I am overjoyed to be wrapping these items that I know will bring my boy such happiness, all while knowing that they may also lead to some overwhelm or sensory overload, too. I can appreciate a time not that long ago when we were at much more of a loss as to what to get for him. He’s never asked for much of anything.

Doing things differently was harder in the beginning. Birthday parties, trips, holidays.  Now we appreciate the joy and balance we find in the way we do these things our own way.

So, this little note is here as a reminder for those in the beginning, the ones struggling with wrapping their heads around “different”, the ones stumbling and getting back up. It gets better.

Or maybe you have friends or family with kiddos like Wilson, who are navigating things like autism, sensory processing disorder, developmental disabilities, or anxiety.

During these times, your grace and patience is extra meaningful and so appreciated.

Be easy on you, and where you are in this. And remember, it always gets better.

Wishing you so much JOY this holiday season.

xo,

Lauren

Appreciating the Slow Progress

All that progress at the salon and then look what his mama did!   I feel like a broken record talking about haircuts on here, but I am so blown away at how this boy is doing with them these days. There was a time when I honestly thought we just wouldn’t be able to cut this guy’s hair. It was just too much for him, and in turn, too much on everyone around him.  I resolved that we would have our own Wilson-Rapunzel situation going on for the rest of our lives and that would be simply fine because the torture that haircuts caused all around was just not worth it.

Here we are, seven years later, and he is cool as a cucumber (well, almost) as mom decides she’s going to buzz all his hair off. I think he’s pretty impressed with the outcome.

A reminder to appreciate the progress, no matter how slow it may be!

Autism & Progress & a Proud Mom

Proud mom moment.  Wilson hasn’t had his hair cut outside of our home in more than six years.  The last hair salon we attempted with him was when he was about two years old, and he was screaming so much before he even got into the chair that the stylist said she couldn’t work with him.  So, we left, and started a haircutting program with his therapy center that lasted about four years.  I’ve continued to cut his hair at home, and while he doesn’t necessarily like it, he has improved greatly and will tolerate it.

Last week, while I was getting my hair done, I asked my stylist if she would be willing to attempt to cut his hair at her salon.  I honestly sat there thinking about it for an hour or so before I asked her.  Deciding when and how to attempt things like this is tricky.  I don’t mean to be pessimistic, but we have been there and done that and I was sweating at the thought of attempting it again. I pictured the screaming and the other clients staring, and the headbanging, and the hand swatting. And thought maybe continuing with the mediocre mom-cuts was good enough.

Her salon is small, quiet, and I had a feeling he just might like it there.  She was very happy to give it a try and we agreed that if it didn’t work out, we wouldn’t push it.

I talked with Wilson about the salon over the weekend. I told him about the cool plants he’ll see there, the big mirror, and the nice lady named Sarah that was going to cut his hair this time. He said “no.”  Later we talked more and landed on him getting to watch his dad’s iPad after his haircut. Sunday night and throughout yesterday, he calmy repeated his schedule, including the haircut.

He did AMAZING.  He stayed calm, let her use scissors (hadn’t used those in six years either!), and was so excited to feed the ducks at the lake afterwards.

Proud is really an understatement. As much as I want to erase some of our tough experiences from memory, they sure make me grateful for how far we have come.

Also, there are really good people out there. Find the courage to ask, it’ll be worth it.

autism & changing the world

When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to try and change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!

progress + happiness

Wilson has worked so hard on tolerating haircuts for YEARS. This has been a series of small, very intentional and consistent baby steps. For reference, it began with him tolerating the buzzer to be in the same room as him. Then it moved closer. Then weeks later, it was about tolerating the buzzer to be plugged into an outlet in the room with him.

You can imagine, the actual haircutting steps were even smaller, helping him to very slowly work through his sensitivities and anxiety around the entire process.

Years ago, I would have never believed that one day he would be laughing and singing through a haircut. He has come so far!

Proud of this boy.

Sweet video via link below:

haircut progress with our happy boy!

I wish I could feel things the way you do

I wish I could feel things the way you do, my sweet boy.

I want to understand.

I didn’t know sound could physically, deeply hurt until you showed me.

I see you fold your precious ears in on themselves, an attempt to mute the overwhelming world.  That doesn’t usually work though. So, you quietly, nervously, moan. This slowly grows in intensity and frequency until your shrieking blocks out the unwanted sound or it’s removed. Whichever comes first.

I want to explain to others how you feel inside during these moments.  The way your senses hide and seek all the input from the world around you so differently than most of ours do. 

Others should know that anxiety and sensory processing difficulties ride shotgun with your autism diagnosis. Together, as a team, they run interference and wreak havoc on your peace. Every hour of every day.  

I could tell them that the seemingly small, simplest of sounds are like the proverbial “nails on a chalkboard” multiplied to the nth degree to you. But that probably sounds silly to you. I know you feel so much more than my words can describe. 

I want them to know in these moments you need space.  To let you moan and shriek. That you can’t hear anything else once you feel this way.

You’re practicing wearing your headphones and we’re so proud of you. But I know this only dulls the sound and you need it to cease to exist in this world before you feel calm in your heart again.

I remember when you were little, we took the batteries out of so many toys, puzzles, and games because they were so distressing.  The things we thought you would love made you cower in my lap at times.

I know that sometimes, even familiar sounds or music that make you happy tend to also overwhelm you so much so that you need to block them out just like the other, unwanted ones. I’m sorry it took me some time to understand this.

I see the way you are constantly ready to protect yourself.  Like when we visit the horses. They are so big and unpredictable, aren’t they? In those moments of silence, you are ready.

Every day you work on tolerating more. You do this for your sister, your dad, and I. You practice because you have the most curious heart and you want to explore this big, unpredictable world, even though it’s so overwhelming.

You’re so brave.

I’ll never feel the way you do, my boy. But I’ll never stop trying.

new adventures

New adventures tend to overwhelm Wilson. We went on a boat ride last night and he did great! We had held off for various reasons in the past, mostly concerning safety and how he would react to all the sensory stimulus involved.  These are the things that you and I don’t normally think about but are forefront in Wilson’s world in a very loud way. The bright sun in his eyes, the smell of nature mixed with exhaust, the wind in his face and subsequent noise in his ears, the heat beneath the snug and cumbersome life vest. He quietly took it all in. Exploring this new environment with his usual precise curiosity.

The biggest sensory obstacle was the abundance of wet items that, according to him, should not be wet. The soaking swimsuits and life vests dripping over the seats and carpet as people came in from the water. The splashing, the items that fell overboard… he went around with a towel drying things as best he could, including his hat that had fallen in the river.  But he remained calm about it all. It didn’t rock his world like it would have in years past.

He even made his way into the water and pure happiness ensued.

Eventually, all the newness, sensory input and excitment caught up with him and he was done. He laid himself under a towel for the remainder of the boat ride home.  He slept well until about 3:30am when he was up and ready to start his day, back in his outfit from the boat ride.  This used to happen after a day at the pool, and I swore it was the chlorine or something that he wasn’t processing well. That was a whole other rabbit hole of research and information. 

I think it’s just the usual roller coaster of exhaustion, excitement, and repeat.  It was so incredible to see that happy face and watch him process everything so calmly.  It’s these kinds of successful outings that give us the courage and confidence we need to continue to venture out and try new things. In the past, he just hasn’t had the coping and regulation tools that he does today. We didn’t either. We have all grown. He’s always impressing us, when we give him the chance. On to the next adventure!

(Once everyone recovers from the lack of sleep! Major props and extra coffee to David for starting his day at 3:30am with our little man.)

hope + progress

This is the boy that never allows his head to get wet.

When we force a hair wash, he used to scream throughout the entire process. This eventually morphed into him yelling for a towel as we quickly washed his hair. He would furiously dry his head and return to his bath toys.

If he gets splashed in the pool, he gets out to dry his head and neck and gets right back in. 

Swimming lessons, floating and water safety/survival have been rough, stemming back from the very beginning at a torturous mommy-and-me swim class (we eventually dropped out.) 

We’ve tried so many tactics, including his ABA interventionists joining us for weekly pool sessions using visual schedules. I didn’t care about the actual swimming part or even getting his face in the water. I just wanted him to be able to float, to be able to survive if he were to fall in without a life vest. He has always been so drawn to the water but has never understood its dangers.

In usual Wilson-fashion, he has come around in his own time. Here we are, six years later, and he has found his zen place, floating in the water. 

Every bath night, David and I look at each other with pure astonishment. Who is this kid?

Maneuvering through life with sensory sensitivities is difficult. The struggles Wilson experiences are often invisible to everyone but him. Certain sounds, textures, and sights literally cause him pain and distress.  This affects the foods he will eat, the clothes he will wear and the places he is able to go. 

Helping him grow and experience new things is a prolonged, relentless, and delicate dance.  I remember thinking he would never be fully potty-trained, tolerate a haircut (or a new outfit!), or learn to float. I know that sounds dramatic but when progress is tortoise-like or moving backwards, it’s easy to resort to that attitude. When you are in the proverbial thick of it.

I still don’t think he’ll expand his food tolerance but here we are, reminded that things can change. It’s funny how renewed hope sneaks up on you right when you need it.