When Grief Affects Every Aspect of your Life

Kya-1

I was swallowed into the autism pit and it almost destroyed every relationship in my life.

I became so caught up in my grief that I began to become bitter towards my friends and their children’s growth. Seeing their accomplishments devastated me. I would become resentful listening to them ‘complain’ about running their kids around or how many activities they were in., etc.

I would snap at them saying, ‘at least you aren’t spending your Saturday’s in therapy.’ I stopped answering the phone and they eventually stopped calling. It drove a wedge between me and the rest of the world. I was stuck in the rut of autism.

The grief is debilitating. It took me to a very dark place and a place I never want to be in again. You must live it to understand it.

It’s unexplainable.

If we were fortunate enough to venture out of our home, it would almost always end in disaster. And it doesn’t matter how much you prepare – you cannot prepare for what autism may throw at you. I remember taking her to Peppa Pig Live. That was a defining moment in our autism journey and it caused severe anxiety for both of us.

I strongly believe I have PTSD from these experiences.

I arrived early for the event, paid $500 for our VIP tickets and before we got through the door is was a disaster. Waiting is not easy for any kid let alone one with autism.

Kya began kicking the entrance doors. I tried to restrain her, my purse went flying along with all my belongings, she ripped an earing out of my ear and I was scolded by the venue for her kicking the doors. Do you know that not a single person offered to help me?

Now, keep in mind I was crying so hard at that point I didn’t even know what to do. I turned around and at least 200 people stood there in utter shock staring at me.

I yelled like a lunatic, ‘you’re all getting a whole lot of Autism Awareness.’

Once inside I could not stop crying. My ear was bleeding and I was horribly embarrassed. How could I not be?

Kya then began screaming and hitting me again. Enter an angel. Someone from the theater literally swept us up and took us to a quiet place AND got me a glass of water or maybe it was wine.

That was the defining moment I knew I could no loner take Kya to events alone.

Fast forward a couple years. I’ve survived and more importantly, Kya is thriving. I’ve begun to rebuild relationships and let go of some anger. It was never that I wasn’t happy for my friends’ children, but I was resentful, jealous and heartbroken.

I would surf Facebook and see parents posting their kids ballet recitals, soccer games, first sleepovers, carnivals, vacations and simple play dates. All of those seemed so out of reach – Kya could barely tolerate being outside our home.

To all the parents going through this, I promise it gets better.

Well, maybe not better, but you will learn to live with it. Autism is always there. You will learn as I have, to accept it. All of it. And there will be days that you drop to your knees wondering how on earth your life can be this hard. And then I look at my beautiful daughter and remember why I am fighting so damn hard.

I wasn’t helping Kya by being so full of anger and resentment. It was holding me back from accepting our life. I was grieving so hard for the child I thought I would have that I wasn’t seeing what was right in front of me.

It stopped me dead in my tracks.

I literally stopped living life and simply went into survival mode. I shut almost every single person around me out. I faked it on social media and posted happy things all the while I was slowly losing myself to the autism hole.

It took me a long time to accept that autism was going to be forever. It took a lot of time and understanding from some exceptional humans. Some to this day don’t fully understand the impact they had on me.

There are still far more bad days than good, but I have learned to welcome each day with what it is.

I am happy to say I am out of the pit, rebuilding relationships, making new ones and taking autism head on.

To my boss – your kindness, compassion and understanding literally saved my life. To my friends that stood by me – thank you. To my family – I can never thank you enough.

On we go.

Written by, Jennifer Dunn

My name is Jennifer Dunn, I am the mother of a beautiful 7 year old girl with ASD. Kya and I live in Vancouver, Canada. I work full-time and also manager her team of therapists. Our weekends are mostly filled with therapy, but I am happy to be on this journey with my Bug. I share our journey at https://www.facebook.com/keepingupwithkya/

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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1 Comments

  1. Melanie on September 5, 2018 at 7:31 am

    I read this post with tears streaming down my face. My daughter is 26 years old, but I always say I have PTSD from her youth. We still struggle, and the memories are painful. Your little girl is precious. Thank you for sharing this.