This story begins back in 2005 when my now 16 year old son was 15 months old.
I was feeling overwhelmed and desperately needed time to myself. I walked into Barnes and Noble and there it was again! “AUTISM” in bold print, on the cover of Time magazine. I wanted to rip it from the rack, throw it on the floor, jump on it, scream and smash it’s existence out of my life.
Enough was enough! I was being viciously attacked by this word everywhere I went. Daycare providers bringing me books. Doctors asking annoying questions like, “Does he ever respond to his name?” A family member inquiring, “He doesn’t respond to his name. Have you considered he might be autistic?” My thoughts consisted of, “No.” “Shut up.” “I hate you!”
Nobody seemed to understand that he was a smart, late-talking boy like Einstein. Sure, he did not respond to his name or wave “bye-bye” but he was just smart and did not see the purpose. I wanted everyone to leave me and my sweet boy alone so I could be happy again.
With every comment or question made about him, I pushed down my worry, fear and anger. I ignored it all, wanting to believe that everyone was wrong. I pretended everything was fine.
I pretended even though there was a quiet voice that said, “They might be right.” I hated that voice.
It got to a point where I couldn’t deny the lack of fineness anymore and while I was not ready, I put my big girl pants on and got ready.
I swallowed my fear and took him for tests which confirmed that everyone was right. My child was autistic. I could not breathe…or think. The moment the word autism was spoken, life as I knew it ended. My son went from being just a child to someone I thought I had to fix.
I didn’t have time to process. He needed help so I dove into warrior mom mode. Research revealed more questions than answers. Any “answers” devastated me. As warrior mom, I handled all the un-fun, challenging stuff so that my husband could be the fun dad he had always been. I did this all without letting anyone know how excruciatingly painful it was.
I would look at my son and feel anger and frustration for all he was unable to do. I had not chosen this. I felt like a horrible mom for feeling these things and the vicious guilt cycle began. All I wanted to do was to crawl back in bed. Instead, I took him to therapies while emotionally I hit rock bottom. I had nothing left to give and the excitement and expectations I had for parenting were gone.
Ultimately, I became an empty shell of a person, defined almost completely by my son’s diagnosis. I had no idea who I was and just went through the motions in my tightly controlled life. I had become everything that I was trying to help my son overcome – controlling, anxious, obsessive and isolated.
I walked into the grocery store and once again, a magazine caught my eye. This time instead of being a dagger in my heart, it was a lifeline.
This magazine issue was dedicated to reconnecting people with their true, essential selves. I needed it more than anything else in my cart. I got home and devoured it like cheesecake. The journey back to my true, essential self began that very day.
The word “autism” comes from the Greek word “autos,” and means “into one’s self.” I had disconnected from myself as a form of self protection from all that I made autism mean. However, reconnecting with and healing my essential self was the key to becoming the person I wanted to be and the mother my son deserved.
I was especially drawn to an article about reconnecting with joy. Despite having been a happy and fun person, I hadn’t felt joy in years. My thinking mind told me this was selfish, but my gut told me this was exactly what I needed. It was time to trust my gut.
The first thing I learned to do was nothing. It might seem to be an odd first step, but stillness allowed me to hear the quiet voice of my essential self once again. As I did nothing, feelings and thoughts began to surface.
Rather than repress my emotions. I set aside time to feel them in a way that felt safe – alone, writing letters that would be burned. I gave my essential self permission to express whatever came up, without judgment.
As I wrote, I cried the ugly cry. My inner bitch expressed anger. I comforted that part of myself that needed a hug. I grieved for the child I had expected. I wrote until I felt complete. Instead of feeling stuck, which I feared, I felt relief, clarity and acceptance.
What was I making autism mean? For myself? For my son?
Was any of it true?
My life was not over.
My son was happy. I was not.
The miserable person I had become was not the person I wanted to be. My response to having a child with autism was to create a life of martyrdom. I did this, not autism.
This awareness was humbling yet empowering because if I could create this, I could also undo it and create something different. I could choose my thoughts, my reactions, and what I allowed into my life.
I could ask, is this bettering my life or keeping me stuck? I began to add more of what felt good – people, experiences, surroundings – and subtracted what did not.
The power of choice expanded to all areas of my life. My son was still autistic but I was no longer controlled by my thoughts or expectations about it. I no longer attributed his behavior to my parenting skills and this made judgmental comments and looks from others far more tolerable.
The more clear and intentional I became, the more my relationship with myself and my son blossomed. I gave myself permission, time and space to care for myself. I’ve learned that one has to care for themselves first in order to best care for others. Not quite what society teaches AND it was only when I did this that I was truly able to see the world from his perspective and we were able to connect – without fear or resentment.
There was freedom in knowing I could help him but that he didn’t need to be fixed. Anger and frustration were replaced with deep breaths and practical strategies that work in our daily lives, like timers and schedules, and this feels so much better.
Autism led me on this journey to go into my self, to heal, care for and notice what I need to be the best person and mother I can be. I began the journey feeling like a victim and emerged as a leader.
A few days ago, for no particular reason, I was laughing and my son came up, with a big smile on his face, and said, “Mama’s happy!”
Yes she is!
My intention for sharing this is to let others who might be feeling this way, regardless of their hell, to know that they are not alone.