Why I Said Goodbye To Hope

I just changed my six year old’s diaper. It was messy. There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand, couch and carpet. This is the side of autism that no one talks about. The kind that challenges your hope and sanity.

This was the tenth diaper I have changed this morning. It is 6:37 am. I am exhausted. I am almost crying. I thought, why me, why us, and why my kid. Why. What did I do wrong?

And I let myself go down the rabbit hole of feelings that accompany raising a baby with special needs. I let myself sink right into it. The self-pity. The why me’s and the this isn’t fairs. And my personal favorite, how the hell can I do this for the rest of my life.

I wondered what I did to deserve this. And for one brief tiny second I let myself picture what this will be like when he is twelve.  I pictured Cooper as a teenager. Then a man. Only for a second though. I let the feelings last as long as it took to wrap the diaper in a Target bag and throw it on the front porch.

As I shut the door, I caught a glimpse of the neighbor kids building a fort. Two boys. Both Cooper’s age. They waved and shouted hello. My son should be out there playing with them. These boys should be my son’s friends. They are neighbors. They are the same age. But they are not. Cooper doesn’t play. He doesn’t have friends. He doesn’t know these boys even exist.

I breathed a sigh of exhaustion as Cooper non-verbally screamed at me to put another diaper on him. And then, just like that, the feelings were gone. All of the sadness and depression and jealousy just left.

How you ask? Well. Truth? I gave up hoping for life to be different a long time ago. I gave up hoping that his autism would go away.

I just, gave up.

God that sounds terrible. But, well, it’s the honest truth. I had to give up. I couldn’t take the pressure of hoping anymore. The pressure of hoping he would talk. Of hoping he would be potty trained. Of hoping he would turn out normal. Of hoping that he would grow up, graduate high school, go to college, get married and have babies. Of hoping that one day, just maybe, he wouldn’t be autistic anymore.

Before you think I am a monster I have to tell you why I gave up hope.

I was living in a false reality. I refused to see what was really happening. And most of all, I refuse to acknowledge the future.

I would tell myself I was hoping for first words, friends, games and hugs but in actuality, I was really hoping for his autism to go away. And I was too scared to say that out loud or even admit it to myself.

The hope was a cover up. And it was killing my reality.

I had turned into this person that was always waiting for my kid to get better. I was waiting for words. For a conversation. For it to get easier. I was waiting for something that may or may not to happen. I was living in this constant game of waiting for life to get better.

I’d have these thoughts like, once we start ABA then this will be fine. Only, it wasn’t fine. Or, once we get him communicating then this will be better. Only, it still wasn’t. And before I knew it I looked around and my son was almost six and I felt like I’d been hoping and waiting for so long that I was missing the amazing kid in my life.

And I was slowly going insane.

Hope. It’s a funny thing. Never give up they say. Keep trying. Stay positive. But, what if the hope is killing you.

I found out that Cooper’s autism was severe when he started Kindergarten. Age five was a tough year for my ‘hope.’ My baby was so different. He was in special education. School wasn’t fun for us. It was IEP’s and stressful conversations. I spent every single day waiting for a phone call telling me something bad happened. I spent every day hoping he would just make it through the day.

I would spend my time hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what could have been.

And then, I stopped hoping.

Just like that. I realized to keep my sanity I had to give up hoping for things like play dates and friends and field trips. I had to let go of the hopes for school dances and sleepovers. And sports and games of make believe.

Giving up hope damn near killed me people. I won’t lie to you. I felt like a terrible mother. But I couldn’t take the alternative any longer. I was living in a constant state of denial.

Do you know what it does to a mom who is continuously asked by friends and family if her son is going to talk? Or use the toilet? Or learn to read? Or move away after High School?

It kills them.

Daily, people were asking me what my son’s future looked like. I’d tell them about the unknowns and the one kid in a million with severe autism that snapped out of it.

They’d always say something like, ‘Well, HOPEFULLY, he improves. Hopefully he starts talking. He doesn’t seem THAT autistic Kate. I bet this will be fine. I’ll pray. Don’t give up hope. I bet he will get better.’

I would stare at these people and I would be dying on the inside. I would always smile and say, ‘hopefully someday.’

Then one day I just stopped. I started saying ‘probably not.’ Cooper will probably never talk. And he will probably live with us forever. And my favorite, Cooper’s autism is for life. It’s not going away. It would shock people. Some would even say I was being dramatic.

I want to tell you about the relief I felt from saying those words out loud. It was so freeing. I realized I was keeping this false hope up to make everyone else feel better. I wasn’t living in reality. I wanted to give the world an answer that made them happy and comfortable. And it was at the price of my heart.

So, I stopped. I gave up the hopes of my perfect, normal child. And as soon as I did that I was able to accept life for what it was.

Giving up hope saved me.

I want you to know we are just fine.

Cooper and I have beautiful moments. We laugh. We hug. I tickle Cooper. He blows raspberries on my back. We go swimming and wrestle. I lay with him before he falls asleep. I laugh at his trains. I sing him song after song. I jump with him on our trampoline. He even communicates with me using his speech device. And, oh, his smile people. It’s the best.

The truth is though I had to give up the hope that someday he wouldn’t be autistic anymore. I had too. I just had too friends. The hopeful waiting is gone now. I don’t spend nights thinking of what if’s anymore. Now, I live in reality. And yes, it can be a sad place. But, it’s OK. We are OK.

And if someday my beautiful, funny, amazing little boy starts talking I will be the first person to shout it from the rooftops. I will experience the joy in a brand new way.

Until then, I am loving the kid that I have. No more hoping for a different one.