I just Focused on Making Life Easier

three boys

This morning my son slept in until 7:30. That is unheard of for him.

To say at age 8 we’ve had our fair share of sleep struggles is the understatement of the century.

We live sleep struggles. But lately, we have some days that are better. Easier.

Traditionally, he wakes up before 4 am, comes in our room, sets all of his treasures and blankets on the floor next to our bed, undresses, turns all the lights on, goes potty in our bathroom, and then stands next to my bed and touches my shoulder.

He never says anything. Just smiles, as if to say, ‘We are burning daylight here mama. Let’s get our day started.’

I typically groan and wonder to myself, ‘This is it. this is how I am going to die. Sleep deprivation.’

But this morning, I was already downstairs feeding the baby when he peeked his head around the staircase.

He gasped and waved when he saw me. As if he hadn’t seen me for years.

‘M-OOOO-M,’ he says. His voice deep and choppy.

He smiled at me and before taking one more step downstairs says, ‘PPPP-OOOO-PPPP-ER,’ and points to the basement.

And so it begins.

On a typical day, my little boy asks for paper hundreds of times. We have it ‘hidden’ in the basement behind a locked door. Although he knows exactly where it is.

He can now verbally request it, walk downstairs safely by himself, grab 3 times the negotiated amount of paper, and come back upstairs.

Every time he shows us as if it’s the best thing that has ever happened to him. Construction paper. 10 plus pieces. All different colors. His favorite.

If I don’t respond with enough elation, he will run to me, grab my cheek, turn it, squeal with delight, and point repeatedly at his favorite colors.

It’s probably the best thing ever, honestly. Pure joy.

A year ago, it would be self injuring. Screaming. Kicking. Hitting. Sitting at the door, banging his hands on it. The thoughts of paper consuming him.

The things that bring him the most joy, causing him the most anxiety. It was heartbreaking.

It’s gotten easier.

I smile at him and tell him we have to wait for the sun to rise before we can get paper. He runs to the window, looks up for the sun and smiles.

See the sun has risen. It’s just cloudy. I’m pretty sure he knows that. But he grabs his Kindle, turns on Thomas, sits down, and requests a snack.

I bought myself 10 minutes.

After starting anti-anxiety meds, his anxiety has lessened. It’s changed our lives. The days are easier now.

My husband is gone today. He’s on fishing trip somewhere. So I am alone with the three boys.

A year ago that meant we couldn’t leave the house. Cooper couldn’t safely ride in the car. Going anywhere made him to anxious. He’d self harm. He’d harm his brother.

It meant no drive thrus. No parks. No stores.

It meant following him around from room to room to make sure he stayed safe. His ADHD keeping him pacing our floors from 4 am to 9 pm at night. No breaks.

Not anymore. It’s gotten easier.

He has learned to sit. He has learned to relax. He can do puzzles. Watch a show.

I don’t have to worry about him running out the front door. Or putting cords in his mouth. He hasn’t stripped a bed in months.

We can even go a handful of places. Like three. But that’s three more than a year ago.

We are going to the park later to go for a hike. He will probably alternate between yelling at me in protest and finding joy in every stick he finds.

He will laugh. Then yell at me.

I will have to negotiate my life to get him up once he sits down in the middle of the trail because the truth is I can’t lift him anymore. I am at his mercy if he decides not to move.

But we will make it. We always do.

After that we are going to Starbucks. They have a drive thru and Cooper no longer tries to tear my car apart piece by piece when we stop moving.

Sawyer will get a cake pop. I will get a strong coffee. And Cooper will ask me for a cookie by repeating ‘PPP-OOOO-PPPP-EEE’ over and over again.

It’s amazing really. My nonverbal boy has words.

He will wave to the Barista. He will get anxious when it takes longer than it should. And it always does.

He will clap when I hand him the cookie and then laugh uncontrollably when I ask him for a bite. And most likely say no. Verbally. Perfectly.

The other boys and I will curb our cabin fever. We will see other adults and kids. We will get out of the house and take in the fresh air.

This is what I prayed for. Easier.

Here is the truest statement I will ever tell you. Love it or hate it…it’s my truth.

Around age five, when I realized my son’s autism was forever, that it wasn’t going away, it hit me like a dang freight train. It leveled me.

But after that, after the grief, and acceptance, I switched my prayers and hopes to making his life easier. To making our lives easier. To creating a world that we could live in…happily.

To calming his anxieties and ADHD. To giving him the tools to communicate, whether that meant verbally or nonverbally.

To teaching him how to sleep and sit. To stopping his self injuring, screaming and aggressions.

To finding places we could go as a family, and practicing, over and over again.

I focused on making our lives easier. It’s as simple and as complicated as that.

Our lives aren’t perfect. But it sure is easier now.

We are on the right path.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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