The Inner Workings of an Autism Parent’s Mind

There’s probably quite a few things we, as an autism family, do that seem completely typical to us, but totally out of the norm for other families. And we haven’t realized these things aren’t typical until others have pointed them out to us.

Here are a few points we’ve learned aren’t typical for most families but are vital for ours:

Always on the defense

In our house, we are always on the defense. We’re always waiting for the next “thing” to happen.

The next meltdown, the next dysregulation, the next big fight between brothers, the next night of little sleep, the next transition to prep for, the next something to need intervention. Tyler and I are rarely completely relaxed at home.

We’re often trying to tag team meltdowns while also cooking dinner or simultaneously doing another task.

When we can’t tag team, it usually means focusing on the issue at hand while other tasks at home go undone. If we’re not completely exhausted by the time the boys are in bed (which we usually are), then it’s time to do those tasks that we couldn’t get done earlier- dishes, laundry, picking up or fixing up any aftermath from a meltdown, etc.

Parking

We never thought twice about how we park our vehicle when we’re out in the community- Until a few weeks ago when we were talking to Charlie’s therapist and describing an outing we had at the Mall of America.

We were talking with her about how hard navigating a parking lot can be with Charlie.

Wherever we go, we always back into the parking space so when we open the doors to get the boys from the back seat, the doors block Charlie from darting out into traffic and the parent blocks the other direction.

We had never considered how unusual that is until that conversation with the therapist who said she had never even had to think of something like that. To us it was just normal.

We never considered that other people don’t strategically park their vehicles.

Now, with all of this being said, Charlie doesn’t dart into traffic every time we’re out in the community. Many times he can walk safely holding on to the handle or short leash attached to Sunny’s vest. But it’s something we are always hyper vigilant about when we are out in public and walking in parking lots.

Charlie’s safety awareness isn’t where it should be for a boy his age.

Throw in a meltdown or sensory overload and he won’t be thinking of safety at all. Which makes parking lots one of the scarier places we need to navigate.

House maintenance

This is something everyone needs to do, right? Well, of course, but ours is on another level.

Boys can be hard on things in general, but throw Autism into the mix and you have a whole new ball game.

I can’t even tell you how many holes in the walls Tyler has had to fix over the years. And I’m not talking little dings in the walls. I’m talking holes the size of Tonka trucks in our sheetrock (and honestly a Tonka truck may have actually made one of those holes when it was tossed across the room).

Holes that require replacement sheetrock, taping, mudding and re-painting. These are holes that are made from toys being thrown during meltdowns or from head-banging during meltdowns.

And I’m glad we are in good standing with Schlage- the lock manufacture, because we have replaced no less than 10 doorknobs in our house. Speaking of doors, do you want to guess how many doors inside our house have holes in them? It’s a fair amount.

Tyler and I often joke that we need to have steel doors installed. Not a day goes by that we aren’t fixing something around the house.

We know our limits

There’s just some things we know won’t work for our family. We know our limits.

We know what will work and what will be a disaster. Some things we need to try regardless of how we feel it will turn out, but other times we just don’t have the energy to tackle something new.

For example, some families can have their kids in multiple sports/activities and run here and there. We know this will not work for our family. Transitions are hard for Charlie and we know the more transitions he’s required to do means the higher probability of meltdowns and dysregulation.

Some people are able to travel long distances with their kids. We know this is really difficult for us.

Charlie’s limit right now is about 1.5 hours in the vehicle. Anything over that amount of time and we need to make a detailed game plan of stops, snacks, breaks, activities, diversions, and rest periods.

Basically, it doesn’t take much to reach our limit, but we’re constantly working on expanding it.

Are dates worth it?

Of course Tyler and I love to go out on dates together, but we often need to consider what’s going on at our house.

We need to consider that most times we leave we almost always come home to chaos and meltdowns, which is why we rarely go out.

We can’t just pay the teenager down the street to come watch the boys for a few hours- it’s not that simple for us. We need people who Charlie trusts and is familiar with, who we trust and who can handle any behaviors that may pop up (and they will, trust me).

Meals

Of course every parent thinks about feeding their family, but for us Charlie’s list of food he will actually eat is small. He will eat the same thing over and over and over again- day after day.

If anyone of you work at the school during lunch time, you’ve probably realized he brings the same food. Every. Single. Day. And that’s not for lack of effort on my end. Getting him to try new foods is tricky.

These thoughts are just scratching the surface.

Autism families live different lives. What consumes them every day is a different kind of worry than most.

A different kind of worry that people can’t fully understand unless they are living it. But what people can understand is our love for all our boys, how much we love Charlie.

Autism doesn’t define him. He’s still our son.

Written by, Kayla King

I’m a mom to 3 boys ages 7, 6 & 6. One of our twins has Autism and nowadays we find ourselves navigating life with Autism and a service dog. You can follow their journey on Kayla’s blog, Adventures of Charlie and Sunny: His Service Dog.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

Interested in writing for Finding Cooper’s Voice? LEARN MORE