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.

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.