The Land of Grief

I’ve scoured so many posts, blogs, and advice columns looking for moms like me. The moms who still struggle with the diagnosis. Moms who still wake up in the middle of the night unable to breathe, and moms who doubt everything they thought they knew.

I look for moms like me, who have been crushed by the weight of autism.

It’s been ten long years. Nothing has soothed these wounds. I’ve tried. I’ve tried different therapies. Antidepressants. Christianity. Wine. Way too much wine. No one seems to understand what this feels like.

The longing and the wandering in my heart. The pain from watching smaller children than mine do so effortlessly what my boys cannot. The wondering if I will ever truly know my boys, their thoughts, and their dreams. I long for deep heartfelt conversations with them about everything and nothing.

I miss what I’ve never had. And I hate the feeling that I’m missing out on what motherhood should be.

My mind keeps asking the same questions. ‘How do I do this?’ and ‘How do I go on?’ And if I’m being quite honest, many days I do not want to go on.

Some days, I want to lay in bed all day, soaking the pillow with my tears. Years have come and gone, and my journey with autism hasn’t become any easier. No one has come to show me the way down this long road. No one has come alongside me to hold my hand.

I have no family to support me. Autism is ignored by my family, and my struggles with it aren’t acknowledged either. Because of this, I lost the ability to be understood by others around me. I became ‘other.’

I lost friends. I retreated into a place where it became about survival. Nothing has changed me the way that autism has.

After the pediatrician told me that my first son was never going to talk, he handed me a sheet with a list of numbers to call after the diagnosis and shuffled my husband and I out the door. I called every single number on that sheet thinking that they were going to “fix” my son.

I remember jumping headfirst into ABA, reasoning that autism was a temporary blip on the radar screen. I thought to myself…’I can navigate this.’

I was used to achieving anything that I set my mind to. I was used to getting the things that I wanted through hard work and a little elbow grease. But slowly over time, when my first son didn’t get better, I began to realize it didn’t matter what newfangled therapy was out there or how many gluten free waffles he ate.

This was life.

A new normal that I hated and couldn’t control.

I remember looking back at my pregnancy and scolding myself for eating hot dogs from Costco and vaccinating him. I began a war of attrition against myself, litigating every little thing I did until I came to the conclusion that autism was my fault. It was the only answer I had.

When I became pregnant with my second son, I thought for sure that lightning wouldn’t strike twice. I had the perfect pregnancy and delivery. I’d read all the baby books, and I knew all the timelines and milestones. I watched and waited each month with agony, hoping that my child would look me in my eyes and call me ‘Mama.’ But the months came and went.

And slowly, I watched my beautiful boy slip away into the world of autism.

This time, I hadn’t eaten the hot dogs, or vaccinated him. This time I did breastfeed.

The question of ‘why’ loomed as big as ever. I thought…’Surely now it must be my fault.’

I’ve gone around the mountain asking the same questions.

‘What did I do to deserve this?’

‘What does the rest of my life look like?’

‘Why did this happen to me?’

I was alone in my grief. I knew of mothers with one child with autism, but I was the only mother I knew with two. I felt like no one would ever understand what life was like every day for someone like me and my family. I felt cursed. And I couldn’t find anyone else who felt the same kind of complicated grief, which isolated me even further.

When I found out that I was pregnant with my third son, I cried. I had no pretenses that it would be any different. And it wasn’t. My third son followed in the footsteps of his brothers, but I was battle hardened this time.

Hearing the words ‘autism’ for the third time wasn’t any easier than the last two, I think I just became numb.

We often talk about what a child with autism needs to survive this world. And that is vital.

But what about the parents?

Especially parents without extended family and support. It takes a village. A village of therapists, friends, and hopefully extended family members to come alongside us. We are expected to be strong for our children.

But I am not strong, I’m just human. Sometimes I want to feel understood.

I am not like the other moms who found their way out. I’m still in the trenches fighting, hoping for the breakthrough that I’ve witnessed other moms have.

No, I am not yet that mom. But if another mom can read this, and see herself in it then at least there’s two of us. Maybe even more. And I’d feel a little less alone. And she would too.

Written by, an anonymous mother to three autistic sons

Finding Cooper’s Voice accepts guest posts from writers that choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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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.