I’ll Always be His Biggest and Loudest Fan
I wish I knew then what I know now.
I was naive when my son invited me into his autistic world. I took his hand and watched in wonder and awe. Never had I entered such a space of simplicity, beauty, complexity or hard. I made mistakes. I was ruled by inexperience.
I’m not sure when the breaking point came, that pivotal shift to the exact moment when I found my voice to advocate for my son. It’s more than a discovery, it’s about setting words into action. When you realize that not only can you speak up, but you will speak up. You will realize that what you say about your child, their health, safety and well being doesn’t just matter. Your words pack power because they come from a place of experience and knowledge, of having known them every single day of their life, through their highest, lowest, happiest and saddest moments.
No one else in the entire world holds that knowledge about your child.
There were so many things that happened that inched me closer and closer to growing into my voice.
There was the middle aged lady at the grocery store that shocked me by laughing, mocking my son for his stimming and flapping.
There was the man that stood outside my car and verbally shamed me because he didn’t think my son or I looked disabled enough to be parked in an accessible parking spot.
There were the many whispers and stares of judgement and pity from other parents and strangers in public places during meltdowns and behaviours.
There were conversations with doctors that made me feel that my concerns about my sons health were ignored and dismissed.
It really was a battle from the very beginning just to get the diagnosis, then the fight continued for every program and every support that we needed.
Nothing comes easy when navigating an autism diagnosis with your child.
The final straw was when I reached that epiphany,that moment of realization that we live in a world that was built upon and operates on the idea of sameness.
Our fundamentals-systems, organizations, institutions are all based on the idea that we all have exact or very similar needs.
I have realized this over and over again as I raise a child who sees and experiences the world differently than everyone else. My son Stalen is 6 years old, autistic and non-speaking. He was diagnosed when he was 21 months old.
Recently, I’ve noticed that my voice is stronger, more focused, and resilient than it once was. The unfairness that used to move me to tears, now ignites my fire within for more.
More programs, more resources.
More action, less talk.
More wrongs made right…for individuals like my beautiful, autistic son.
When you see how the world really is, when you watch the struggles and challenges that your child faces every day, there’s nothing more that you want than to make those things better, easier or different than what they are facing right now.
This is not a race, it’s a journey. It’s about learning and growing. It’s about encouraging, supporting, and ensuring that your child has what he/she needs to be successful, despite their challenges.
You will always be your child’s biggest and loudest fan.
I am almost 5 years in. I have just come into my advocacy voice. I’m not going to give up, shut up or let up….in fact I’m just getting warmed up.
Written by, Chrystal Venator
Chrystal Venator is a proud Canadian, wife, ASD Mom, and Step-Mom. In January 2017, at 21 months her son was diagnosed with autism spectrum disorder. He is 6 years old and non-speaking. Since his diagnosis, she has become a full time stay at home Mom. Chrystal is 1000% focused on raising autism awareness and helping her son live a full and fun life. You can follow their story on Facebook at Stalen’s Way.
Interested in writing for Finding Cooper’s Voice? LEARN MORE
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, subscribe for exclusive videos, and subscribe to our newsletter.