David Loves Road Trips.

One of his favorite places to go is “Gramma Grampa house.” Whether it’s my parents in South Dakota, or Drew’s parents in Northern Wisconsin and Minnesota, “Gramma Grampa house” is always on the approved list for trip taking.

With David’s anxiety, our communication with him surrounding these trips has to be extremely focused and well-timed. If we mention the trip, it better be because we’re getting in the car to go.

Or we will hear about it.

Every 4 seconds.

For days.

We don’t even make packed bags visible to him. As soon as he sees them, it’s on.

“Gramma Grampa house?!

Gramma Grampa house?!

Gramma Grampa house?!”

We even have to be explicit in which grandparents we’re going to see, because David is also a savant-level mental mapper. The “split” to go West to see my parents or North to see Drew’s is in Central Wisconsin, and he starts becoming anxious about two miles before it – mind you, it’s 175 miles from our home. If we tell him we’re going to see my parents and go straight at that split, all hell breaks loose.

The same can be said for leaving our parents’ houses to return home. The communication has to be very explicit. In these instances, we need to start communicating with David that we’re leaving almost as soon as we get there. “All done bye bye Gramma Grampa house!”

He’s never fond of leaving our parents’ houses.

So this weekend, we went to my parent’s house in SD to help them with their front deck. The project went smoothly, Allayna helped us out huge with David while we worked, and we ended up finishing early with all of Sunday to relax.

So we had an idea for going to visit a State Park today. It’s fall, and Allayna wanted to go see the colors.

We started communicating that to David, and for a long time it did not go well.

Even trying to let him know that my parents were coming with us; he simply did not want to hear that we were leaving.

Sometimes communicating with David gets taken for granted, because there are a lot of conversations in a day that are based on his rewards and favorite things. Tablets. Snacks. What movie he wants on.

Then, we have a situation like today.

No matter how we explained to him that we were going to come back, that everything was okay, that we weren’t going home… David refused to hear us. We were having a communication breakdown.

David’s anxiety about leaving was standing in the way of us being able to communicate with him that everything was okay. Even watching as Grandma and Grandpa climbed into their car to come with us, David was still trying to breathe through it.

I wish there were a way to tap in.

To be able to whisper past the anxiety and the stim, and tell him “it’s okay. Just hear my words. Everything is okay. I’m here.”

To be able to see what’s hanging up our communication.

Is it me?

Do I really still not know his language?

Why can’t I calm him?

Even as we were in the car, David required verification over and over again.

“First park, THEN Gramma Grampa house.”

“Okay buddy.”

“First park, THEN Gramma Grampa house.”

“Yep.”

“First park, THEN Gramma Grampa house.”

YESSSSS, DUDE…

Please don’t get me wrong. The fact that David even HAS words is something we are BEYOND grateful for. We didn’t always know this would be the case.

But having words, and being able to verbally communicate using them, are two very different things.

David has no way of communicating what hurts or where; he can’t tell me how his day really was, or how he’s feeling. Answers to questions like that are scripted and mean nothing to him.

This makes these intense moments really hard, because you need him to understand everything is okay; while he’s having a hard time telling you that for him, nothing is.

It’s in these moments you have to learn to listen without ears. You have to learn to hear what he’s trying to say through tears and yelled scripts, and you have to find a way to communicate with him that you’re simply there and you love him.

Most importantly, you have to keep trying.
You have to keep talking.

Maybe one day, instead of a communication breakdown, you can experience a communication break through.

Here’s to hoping. 💙

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