Our introduction to the autism world was a single, unforgettable event etched into my memory, haunting my dreams, and fuelling my resolve to always speak up.
Let’s rewind to a time when I knew nothing about autism and my life teetered on the edge of exhaustion. I never slept, and when I did, I would wake up suddenly. My mind was flooded with ideas, thoughts, and plans of how I was going to help my son Avery escape the hard.
I had this idea it was a simple fix, and we had to just leave the ‘hard’ and never go back to it. See, Avery got diagnosed with severe nonverbal autism and I felt like our world had ended when he got diagnosed.
All my hopes, dreams, and the future I thought he would have seemed to go Gray. I was sitting in the Gray, and I didn’t know who I could reach out to. I needed to vent; I needed to talk to someone who understood our hard and my Gray.
Fast forward a few weeks to me sharing about Avery’s diagnosis online and how we were struggling with sleep, vitamins, and therapy choices. I remember an entire day had passed and no one had commented on my post. It felt like I had shared our hard and no one cared.
It became clear to me we were alone in this and everyone else must not be struggling. It must be something I am doing wrong, then. As quick as I went to my Gray place where the tears flowed daily and never stopped, a notification popped on my phone – another mom was reaching out to me. Thank goodness, someone else who understands.
A simple notification I clicked on turned into a growing friendship. Now I was thrilled, because to be completely honest, I had no one who could begin to understand what I was feeling or what our struggles were. That’s just the way it is as a special needs parent. But slowly, I started to leave the Gray. Slowly, I decided to share more about autism online. Slowly, I felt less alone.
Let me tell you, my guard was completely down, and I was on cloud nine that I had gained a friend who knew, who understood what this life looked like. Then one morning, as I was trying to get my kids ready, I get a message that I was invited to a mom’s tea.
I was thrilled to be included, nervous about making a good impression, and focused on looking perfect my excitement and anxiety all tangled together.
I was ready to gain some mom friends, but little did I know as I walked into this beautiful suburban style home at 9 a.m. sharp, my entire world would change along with all my thoughts on getting invited to any function in someone’s home.
I remember walking in, saying hello to the 7 other moms there. After a quick introduction, I knew I was the new mom. The living room where we all sat was cold. The living room felt heavy. The living room had this incredible emptiness to it.
My guard instantly went up when books started getting passed out with pads of sticky notes and pens. Before anyone spoke, I knew I needed to leave immediately. Something was not right about this tea I got invited to.
Me getting familiar with the world of autism was an unsettling experience. When I tell this story, I say it was ‘The Dark Tea Party’ that made me find my voice I have now in the autism community.
As I sat frozen with tea in one hand, and my mind started to race into panic mode. I had a book on my lap I couldn’t even flip the pages onI froze, felt sick, and realized this wasn’t a typical mom’s tea it was something dark and disturbing beneath the surface.
She asked me, “What do you have to lose?” and I froze, unable to speak, stunned by the danger behind her question. If I did, they were coming out in no rhyme or reason and without control. I remember hearing just before I could answer anything and get up to leave, ‘Bleach Therapy can cure anything Katie, don’t you want to cure Avery?’
The experience revealed the dark side of “mom culture” and bleach therapy, teaching me I didn’t need mom friends I needed to embrace Avery, love his autism journey, and advocate for him.
