When Your Home Isn’t Your Safe Space

I am a home body. I always have been. I love being in the comfort of my home and it’s definitely my first choice when it comes to weekend plans. And I guess in a way, that’s a good thing, because Cooper’s autism brings a high level of isolation. Some could say I even settled into the isolation faster than my spouse. He is a social butterfly. Just like our other son.

Lately though, the stress of being home is catching up with me. And it’s not just the isolation this time. My autistic son’s most challenging behaviors have really ramped up again. He is stimming on multiple Kindles, lining up objects, hoarding favorite items, tearing apart beds, destroying rooms, etc. I have an idea that he isn’t feeling well. Which is very challenging. Cooper masks stress, anxiety and pain with behaviors. I know that.

So, step one is figuring out if he is feeling well and if he is not…getting him healthy.

Step two is either managing or eliminating his behaviors.

And this can make it feel like we are living in a prison. Suddenly, home isn’t my safe space. Or my calm space. And before I know it, I start offering to run to Target or the Grocery Store. I want you to know this is different than the typical chaos of life. This is different than a messy kitchen and a toddler that carries every toy into the living room. I know that because I have one of those as well.

This is rigidity and anxiety coming out in the form of lines. Or hoarding. This is a messy child times 100.

Today, I took a a second and looked around my house. If you walked in you would know in a heartbeat that a child with autism lives here. There is no hiding it. It’s obvious. Every bed is stripped. There are lines everywhere. Jamie, my spouse is making an emergency trip to Menards to get door knobs with locks. We have to gain control.

This is so much more than a mess. This is anxiety all over our home.

And I want to say a few things. I don’t want to sugarcoat it with a smile and a giggle. Because, it’s been seven years. Seven, long years, with no end in site.

I hate that I can’t have throw pillows. I hate that I can’t have couches with cushions on them. I hate that I can’t have family photos on display in my home. I hate that all of my photo albums are destroyed.

I hate that my bedroom door has to be locked. I hate that we need to lock Sawyer’s door because his brother eats his toys and rips his book. I hate that at any given time the three beds in my house are stripped. And I don’t just mean the blankets are on the floor. I mean the beds are stripped down to the box spring. And after a long, long day there is nothing worse then reassembling three beds. I also want to say, I am not going to have my children sleep on the bare mattress. That just isn’t me.

I hate that if I forget to lock my own door, for one dang second, Cooper will be in there destroying. He knows. He waits. He got into my box of wedding memorabilia last week. Sigh.

I hate that I can’t have any visible items in my bathroom. Meaning my shampoo, hand soap and towels are all hidden. Cooper’s latest obsession is throwing stuff in the bathtub. I hate that Jamie and I are having actual conversations about locking our bathroom doors and how that will affect the boys.

I hate that our toothbrushes need to be hidden all the time. And I don’t mean hidden in a cupboard. I mean hidden behind a locked door. And I really hate that if I forget to hide my toothbrush for one minute, it will be lost or destroyed.

I hate that Cooper is throwing everything he can find into the kitchen sink. Mail, keys, Sawyer’s artwork, dishes, etc. It’s messy. And loud. It means that nothing can be visible in our kitchen.

I hate that my kitchen table has the bare minimum of chairs, which is currently three, because I know that Cooper will move them obsessively around the house. I hate that the rest of our chairs are behind a locked door in the basement. In this video Cooper is doing one of his chair lines. These chairs were locked in our garage. But Cooper saw them when we parked a few days ago. Before I knew it he got into the garage and brought every chair in one by one.

If you are following along you will have noticed that every room of our home is a target right now. It’s not just one room that has to be locked. It’s the whole dang place. Our house is starting to feel awfully small I tell you.

I feel controlled by these behaviors. And maybe if it was just one…it would be cute. Or funny. And yes, I do find the humor. I’m thankful I have a partner that will laugh at the struggles with me.

But it’s also exhausting and it doesn’t feel so funny anymore. It feels like we are walking on eggshells at our house.

It feels like we’ve lost control. Jamie and I have often joked about running away.

I know that someone is going to say, you have to teach him to stop doing these behaviors. And you are absolutely right. But what I’ve noticed with my son is it is all or nothing. He’s either lining up chairs, hoarding pictures, tearing apart beds and throwing everything in the bathtub, or he’s not.

And by then, I am at my breaking point and our family has moved into all out survival mode. I have to stop the behaviors and figure out WHY he is doing them. Always the WHY.

Survival mode in this house means mama hides all the chairs and pillows, locks all the bedroom and bathroom doors and hyper vigilantly watches Cooper to curb behaviors.

I know this will pass. I know it will pass because it has before. But I also know that it will return. If we let our guard down for one second, leave doors unlocked, toothbrushes out, etc., the behaviors reappear over night.

I want you to know it is really hard to live like this. It has taken it’s toll on our sanity, our family and our lives.

Right now, my home is not my safe space. Right now, my home feels like it is controlled by autism.

And that is exhausting. Because there is nowhere to hide.

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 and subscribe to our newsletter.