Some Days I Have Nothing Left

I brought Cooper to the doctor this morning. He’s had chronic ear infections for years and I need to know why. My son is living in pain and he shouldn’t have too. His behaviors sky rocket the worse he feels.

Fix the pain, fix the behaviors. Seems pretty easy right?

I knew this appointment was going to be bad. I never take Cooper anywhere alone anymore. At nearly 70 pounds I struggle to have control of him. He is fast and sneaky and a runner.

One of Cooper’s biggest struggles is waiting. He gets wild and silly the longer they make us wait.

Today, we got to the clinic at 7:55 for an 8 am appointment. They didn’t call our name until 8:20. I knew it was going to get ugly. I saw the signs. I saw the wild look in his eye as he looked directly at me and knocked over a chair. He just stared at me and smiled. I stared back without a smile.

As I moved towards him he stepped back. I stepped again and he dove right. He thought we were playing. Everything is a game for Cooper.

The waiting room was of course crowded. I knew where every single person was sitting. I knew there was an elderly man in a wheelchair behind me. I know this because Cooper likes to push anything with wheels. I knew there was a baby in a carrier to my left. I know this because Cooper will kick them. Not to hurt the baby. He doesn’t even know there is a baby in the car seat. He does it for the noise and the reaction.

You can imagine how well that goes over.

Babies, children and elderly. My worst nightmare.

I want you know I am over the stares. I am over people thinking I’m a bad mom. I don’t mind any of it anymore. Honestly, I don’t care. I am to busy focusing on keeping Cooper safe and keeping everyone around him safe.

That is my life now. And I typically do it all with an audience. My son is loud and extreme.

He is a tornado. A tornado that will kick, push and throw for attention.

The nurse called our name at precisely the last second before Cooper bolted. He heard his name, looked up and smiled. And off we went.

I praised him the whole way back. I am an ABA, please work, try anything, be consistent, please just be good for once, silent prayer mom.

Once in the room, Cooper progressively got sillier. He’d been kept waiting too long. The blinds were slammed. The lights were turned on and off. The chairs were moved. Anything with wheels was pushed. At two different points he bolted out of the room and down the hall. If I was stopping him from pushing a computer he was immediately out the door.

I was one step behind. This is my life.

The sweat was dripping down my face. I eventually sat on the floor in front of Cooper and held his feet while we waited. I sang to him. He was on my phone. I did deep pressure. I praised him for having a calm body and for sitting.

He laughed. He giggled. Every few seconds he would grab my face and rub his nose and cheeks on mine. I thought about removing his shoes.

I looked at his angelic face and wondered why. That’s my most common thought. Why.

Some days it’s why my son. Some days it’s why me. Some day’s it’s why is he in pain. Some days it is why is this so hard. And some days, it’s all of the above.

Just as he settled down his doctor and two nurses came in.

Three against two. Cooper doesn’t like that. The room was small. It was crowded and dark because he had turned the lights off. It was hot.

I told the doctor about the last week. Ear infection. Drainage. Bed stripping, Behaviors. Not sleeping. I prefaced it with a fake smile and ‘Doctor, I rarely do this, but I am doing the crazy mom thing and you will listen until I am finished. You will listen because we can’t live like this anymore. My son is in pain. And you need to tell me why.’

He just stared at me.

Now, I want you to know I know this doctor well. He is a good man. He knows Cooper. But no one, and I mean no one besides Jamie and I, know what it is like to live with Cooper.

I went onto to tell him about Cooper throwing everything in the bathtub. I told him my doors were locked. My frames were destroyed. I told him about the screaming.

And I told him that he doesn’t do any of this when his ears are healthy.

I told him our son’s behaviors are controlling our lives.

As I was talking, Cooper was getting more and more anxious. I moved with him as I spoke. But he was one step ahead of me and with one flick of his arm he swept the whole entire medical supply table on the ground. He delighted and jumped at the sound of a hundred otoscope tips crashing to the ground.

The mess only excited him more. I froze for a brief second.

My eyes darted to our audience. They stared in disbelief. I did what I’ve been taught to too.

I engulfed Cooper in a bear hug, sat on the floor, skirt and all, and contained him. I put my finger up to shush the doctor as I did hand-over-hand with Cooper.

Suddenly, it was like I was watching myself.

A woman, sweating, bare knees, on the ground. A 70 pound boy, screaming, kicking, head flying back.

As I was containing him I heard someone say….’autism, wow it’s hard. I have a friend who has an autistic son.’

I looked up and made eye contact with all three people. I smiled that fake smile. The one that everyone loves. The one that makes it look like I am strong and invincible. The fake one.

Over Cooper’s screams I told the doctor to go on.

And he said he’d help me. He’d do a cat-scan of Cooper’s head. We could either rule out ear issues or find out what’s wrong. Either way, we’d get some answers.

They told me to hang in there. They told me I was doing a great job. And that I should keep looking for increased behaviors.

I giggled. Increased behaviors? I’d be six feet under.

After they left I continued to sit there with Cooper rocking back and forth. A mother and her daughter walked by. They stared in. I stared at them and whispered in Cooper’s ear. Before we left, I made Cooper pick up every single item he threw. It took 10 minutes. I helped. I stared at him. And I wondered why. Why. Why. Why.

I was following through. I wasn’t reinforcing bad behavior. And mostly, I was catching my breath. And waiting. Waiting to do that walk of shame I do after every appointment.

I wrangled him through the hallway, lobby, down the stairs, and through the parking lot. I felt the stares at each point.

I got him buckled in his seat. I gave him a snack, a drink, his pictures, and his Kindle.

I sat down in mine with a sigh and took a deep breath.

And I waited. I waited for the tears that always come after visits like this. But they didn’t. I have no tears left to cry. I’ve reached that point.

I’m exhausted. Some days, I swear autism has won. Some days, I don’t know how I can do this for the rest of my life.

Today, was one of those days.

I’m tired of trying to find the joy in the struggle. Because that’s what I do. I plaster a smile on my face and shake off the hard stuff and I find joy in the five minutes a day where it’s okay.

I live for those five minutes. Those five minutes get me through.

Some days it’s enough. And some days it’s not.

Yesterday, Cooper and I sat on the floor and played puzzles. I stripped away his Kindle. I set the timer. I waited for him to get through his meltdown and behaviors. I took the kicks. I watched him run. And I waited. And then, he eventually sat down. I watched him put the letter pieces in the correct slots. I made silly sounds. He laughed. Every few seconds he would kiss me with a sloppy mouth. He’d throw his arms around my face and smile like I’d just said the funniest thing ever.

And then the timer went off. And before I knew it…it was over. Within seconds he was back to demanding all the curtains in our house be closed.

Those five minutes though. I felt hope. I felt a connection. I felt like we were going to be okay.

That’s all I got yesterday. Today, I didn’t get any. Those five minutes are few and far between.

Why do I have to live life knowing that I get five minutes of joy with my son and the rest is hard. That is every day. That is my forever.

And it’s not fair. Some days, I have nothing left. And today, is one of those days.

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.