I Knew it would be Hard, Just not this Hard

When my son was diagnosed with autism five years ago, I knew we were in for a challenge.

And I don’t just mean the fight for services or supports, I just knew my little guy was a pistol.

At that time, he didn’t sleep. At all. He was up all night and started our day around 4 am.

I also knew that he hated all foods. And refused to eat almost everything.

I knew he couldn’t communicate. And refused to participate.

I knew everything was a fight. He refused to try anything new.

He hated therapy. All therapy. He didn’t like toys. Or being outside. Or leaving our house.

So, when the word autism was given, my husband and I knew that we were in for some challenges.

Life was hard for a lot of years. Really hard.

We were trying to find our place in life. Where did we fit in. How did we balance severe autism and having another child.

We worked to find the right therapies. We found out public education wasn’t going to work. Had some tough times in our marriage.

Moved a lot for better services. Struggled to maintain friendships and obligations.

Put way too much therapy debt on a credit card.

Found out his autism was severe. And nonverbal. Added in Apraxia and a severe intellectual disability. A one-two-three sucker punch.

But those are just words really. Words on a piece of paper.

They were nothing though compared to how hard it was to never leave the house. To never relax. To never sit down.

Blah, blah, blah. You know the story. It’s not all that unique really.

We had to make our way through. Just like all families of newly diagnosed kids have too.

But in reality, none of that compared to the emotional side for me.

As my son aged, 5, 6, 7 and now 8, I’ve personally struggled a lot. Not with love. Don’t ever think that.

I have more love for that little boy than I ever thought possible. I am his person and he is mine.

But with the picture I had in my head of who Cooper would be. And our relationship. Of our family. Of our life.

Don’t let anyone tell you that it’s not hard to say goodbye to a typical path.

I thought Cooper would do so many things. I thought he would play sports. And have a dozen friends.

I thought he would love riding his bike. And fishing with dad.

I thought we would make a trip to Disney World. And camp all summer long.

It’s safe to say that life didn’t turn out how I expected.

And while those may seem like big things, there are even bigger things coming in the future. Ones that I try not to think about. But they still manage to creep in while I’m in the shower or falling asleep.

School plays and dances. Prom. Getting his driver’s license. Graduation. Moving out. College. First job.

Going on fishing trips with his dad. Having his first beer. Going to his first concert. First kiss.

It’s hard. It’s as simple and as complicated as that. It’s just hard.

I walk the fine line of realistic hope every single day. I stay positive. I stay hopeful. I stay motivated.

But again, I’m 8 years in.

I’ve had time to accept. To understand. To change my perspective the best that I can. To adjust.

And I’m doing okay.

But lately, we are encountering a new type of hard.

A harder hard.

And Jamie and I didn’t expect it.

We are dealing with the forever of this. And an intensity that we never expected. With no break.

And challenging behaviors. Aggressions. Yelling. Meltdowns. Protesting.

And let’s be clear. We are realists.

We knew we would always have a harder time doing things. Like going to the store or visiting family. We just didn’t know it would be this hard.

Somedays there isn’t a second to breathe. It’s constant hyper awareness. Never taking a break.

It’s having a family BBQ on Memorial Day, everyone enjoying themselves, playing basketball and catch, and watching your son meltdown and self injure. And knowing there is no real reason why.

It’s knowing you can’t run into a store. Or go to a movie. Or leave your front door open.

It’s yelling. So much yelling. It’s running. And chasing.

It’s an 85 pound child dropping to the ground, in an instant, kicking and flailing. And everyone staring at you.

It’s laying your body on his…just hoping you can both make it through.

And then it starts all over again at 5 AM.

And yes, there are joys too. There is beauty. There is laughter and happiness.

Cooper has made SO MUCH PROGRESS. I want to be clear about that.

He is potty trained. He is starting to verbally communicate. He is dressing himself. He can ride safely in the car.

But the hard. It’s harder than I every thought it could be.

I am a big enough person to admit…I knew autism was going to be challenging. My eyes were always wide open to that. I just didn’t know it would be this hard. This intense. And for this long.

It’s okay to say you are tired. And it’s okay to admit that it’s hard. It means you are human.

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.

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