Hearts have always been Wilson’s favorite shape.

Because of his autism and limited verbal skills, in all of his five years on this earth he hasn’t told me this, I just know.

He is drawn to them. He likes to build them by putting other shapes together and points them out whenever he comes across one.

This makes perfect sense, with him being the sweetest little guy I know.

Sweet, and a little spicy, too. He is often in his own world, one that we are constantly working to understand, and I know he is working so hard to do the same.

The daily frustration he feels from not always knowing how to clearly get his wants and needs across just hurts my heart to think about.

Our constant prompts and reminders to “use your words” or “try again” are likely just as maddening for him as the desire to hear his sweet voice is for us.

We often forget that words aren’t what is needed, not what is missing.

For someone with limited eye contact (or, as the reports say, “poor” or “lack of”) he catches me by surprise when he sits and stares into my eyes with such a prolonged gaze. It’s like he is studying every single molecule in my eyes, lashes, and skin.

He touches, smells, takes it all in.

I always wonder what he sees when he surveys me so intensely. He is probably just admiring his own tiny reflection mirrored back at him from my eyes. His reflection has always fascinated him.

Sometimes it feels like he is peering right into my soul. He is so full of wonder and curiosity. I know he can’t read my mind, though. He doesn’t seem to feel my fear and worry nor is he weighed down with concerns about safety, inclusion or health.

He is pure happiness, and I am so thankful for that.

Simple things make him so happy.

He recently discovered our old DVD collection and has been carrying several around with him, his new treasures.

The other night, he repeatedly played the same DVD over and over again, always stopping and restarting after the previews had finished.

During the preview for Dumbo, the sweetest song called “Baby Mine” played in the background as Dumbo’s mother caressed, comforted and protected her baby. Wilson came over and gently stroked my face during this scene every single time he replayed it.

If you haven’t heard “Baby Mine” (by songwriter Frank Churchill), grab a tissue, here is a little glimpse:

Baby mine, don’t you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one when you play
Don’t you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you

They’d end up loving you too
All those same people who scold you
What they’d give just for
The right to hold you 

Cue the tears.

This sweet boy may not talk much, but he is learning how to communicate in so many different ways every single day. He pays attention and interprets even the tiniest of details.

In that tender moment, I went ahead and let myself feel what I thought I had been needing to hear from him.

I love you. I am happy. I’m going to be OK. Thank you.

Truthfully, I don’t know why I thought I needed to hear these things. Wilson has been showing me all along, I just wasn’t always listening.

“Is he going to be like this forever?”

My seven-year-old niece was quiet and hesitant with her inquiry.

Her mom and dad have talked to her about my son’s autism and I was thrilled when they told me that she had some questions for me.

I love spreading autism awareness. I especially love talking about my sweet boy and all of the unique, wonderful and challenging pieces that come together to make him so very special.

I could barely contain my excitement that someone so young was taking an interest in learning more about autism. I said, “Ask me anything!”

“Is he going to be like this forever?”

I wasn’t expecting that. I was certain she was going to ask why he doesn’t talk much, or listen to her, or why he lines up his toys over and over again.

I started rambling on and on about how he will always have challenges and possibly be delayed for his age, but he won’t stay like this. I’m quite sure I lost her.

I do know that I avoided saying, “Yes.”

I often write and talk about how important it is to stay in the present when raising a child with autism. I don’t allow myself to think too far ahead when envisioning my son’s future. There is so much fear and worry about the unknown, the stress over it can send me down a spiral to nowhere. I try really, really hard to avoid this. But once a week or so, I have a meeting or conversation that forces me to think of my boy’s future.

The other day we were in a session with our OT, who I adore, she has been such an integral part of my son’s progress, treatment plans and my overall understanding of autism and what he is experiencing. We were talking about cognitive testing and upcoming IEP meetings and preparing him for kindergarten.

Kindergarten. I seriously say that word like I am allergic to it. I have so much anxiety about him entering kindergarten but that is a whole different spiral that I will save for another day. She mentioned something along the lines of “if he graduates high school.”

IF.

I had absolutely never put it in my mind that there was a possibility he would not graduate. I mean, look, I can’t bring myself to think as far ahead as kindergarten next year!

That thought stayed with me the rest of the day. These are the kinds of conversations that trigger that pesky spiral to nowhere. I shouldn’t have to be thinking about IF my son will graduate from high school. He is five years old.

I should be dreaming about him graduating and going on to be an engineer, a firefighter, a professional climber, whatever he wants to be. He can be whatever he wants to be. God, help him be something. He’ll be something. Let’s see, his interests are keys, eggs, pirates, and trains… and music! He could be a musician. No, some sounds literally hurt him. That won’t work. How will he even get to work if he isn’t ever able to drive a car. I can drive him. He’ll probably be living with us anyway. Maybe he could take a bus? No. No bus. I just can’t get old, or unhealthy or busy so I can take care of him. No one else can take care of him like we can. God, please make sure I stay healthy for my boy. I need to be here.

I share these thoughts with hesitation. I know some people would call this a pity-party or complaining. Call it whatever you want. I still want you to know what it looks like, and how quickly it happens. I know some of you know what it feels like, too. The fear, worry and anxiety that some parents face. The push-pull of telling yourself it’s ok and it really not feeling ok.

I kept the excerpt short, because I will not allow myself to stay in that rabbit hole for long.

Negative thoughts are exhausting and they take their toll. That’s why it’s so important to stay right here, right now and continue to grow.

I know my boy is going to do amazing things. He already has.

Goodbye, 2018!
Many days this year felt as chaotic, fast and disheveled as the wake of a leaf blower. Or a hair dryer. Or something to that effect.
We untangled the idea that life can be good and hard and messy and beautiful all at the same time.
I’m so thankful for this blog. It has become the safe place for my midnight ramblings and daydreams to live, the avenue to organize thoughts, put together our puzzle, vent, praise and celebrate our sweet boy.
We are so thankful for the support we’ve felt from friends near and far, old and new.
Looking forward to continuing the climb in 2019.  Forward and up.