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.   

Slow and Steady Progress

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There was a time when I thought this kid would NEVER, EVER, get a haircut.

Today, we busted this one out in 5-10 minutes with NO SCREAMING! 😱

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I’ve already posted about haircut progress in the past, so I’ll spare you all the desensitization details.

Moms and Dads: hang in there if you are dealing with this or other sensory sensitivities, potty training, etc. It will get better.

If you think you are moving slow and taking baby steps, move even SLOWER and take smaller steps. It will be worth the time spent.

Side note: his incentive today was canned green beans 🤷🏼‍♀️ he wants what he wants! And when I tried to give him a new brand with no salt added, he smelled them and requested “different green beans”. Can’t sneak anything past this stud! 🤣

Also pictured below- our white board where we keep track of stars earned during the haircut and my version of a cup of green beans. 🙌🏻

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Also side note: he does NOT stop moving 🌪 but was so happy, I needed to capture it 📸 .

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As goes with autism, attempting this cut the night before school pictures could have gone VERY differently!! .

Today was a good day 💙 

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