Why I Gave Up Hope As An Autism Mom
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. As I was changing him he gave me a swift kick to the groin that took my breath away. This is the side of autism that no one talks about.
I almost started to cry. I’ve been awake since 3:30 am. I haven’t slept through the night in months. I’m exhausted. And I let myself think, just for a second, ‘why me, why us, and why my kid. Why.’
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, the, I’m not strong enough to do this for the rest of my life.
I wondered what I did to deserve this. I made it all about me for a second. Which I never do.
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 their playing with them. These boys should be my son’s friends. They should be having play dates. But they are not.
Cooper doesn’t play. He doesn’t have friends. He doesn’t even know these boys 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, I snapped out of it. 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 it all up and I I let myself fully accept reality.
Before you line me up for the firing squad hear me out. I had to give it all up.
I was living in this exhausting fantasy world that so many parents of newly diagnosed children live in. My heart truly believed that his autism was going to go away. If we just did more therapy. More teaching. More of everything…he would one day be fine. And then, well then, we could take a sigh of relief and look back on all these hard times and smile. Cooper would be talking. He would be in a typical classroom. He would have friends and playdates. We would all be fine.
That fantasy world almost killed me. The hoping.
I couldn’t take the pressure of it 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 and get married and have babies. Of hoping that one day, just maybe, he wouldn’t be autistic anymore.
I would tell myself I was hoping for first words, friends, games and hugs but what I was really hoping for was that his autism went away. And I was too scared to say that out loud.
The hope was a cover up. And it was killing my reality.
I had turned into this person that I hardly recognized anymore. I was treading water basically.
I was waiting for words. For a conversation. For it to get easier.
I was waiting for something that most likely wasn’t going 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.
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 days hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what it ‘should have been like.’
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.
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 when she 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?
Daily people were asking me what the future looked like. And they’d always say something like, ‘well, HOPEFULLY, he improves.’ ‘Hopefully he starts talking.’ ‘Hopefully, he improves enough to attend public education.’
I would stare at these people. And I would be dying on the inside. I would always smile and say, ‘hopefully someday.’
And then one day I just stopped. I started saying ‘probably not.’ And now, I say, ‘no.’ 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.
And the relief I felt from those sentences. It was so freeing. I realized I was keeping this false hope up to make everyone else feel better. I wanted to give them 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 and our family.
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. And slowly, those things started to make me feel OK. Not quite so sad.
But I had to give up on the hope that we would have someday have a conversation. 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. But I’ll be dammed if I am going to spend my life waiting.
Instead, I am loving the kid that I have. No more hoping for a different one. Because he is the funniest, cutest, most amazing little boy. Autism does not change that.
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.