April is Autism Awareness month.
And I’m going to be honest, I just don’t know how to feel about that. For me and others touched by it, autism awareness is often a lifelong experience, not an event. And sometimes it feels like I’ve suddenly been thrust into this club where everyone else is excited about something that I can’t even define. I don’t really know what to do differently for this month, so Instead I’ll do what I do best, share my heart and share what autism awareness means to me.
I don’t think of myself as an autism mom. I am a mom. Pure and simple. And God gave me the best gifts imaginable- two little boys…
And both of these good and perfect gifts have autism.
Autism has been a part of our life for almost three years now. It feels like a lifetime, yet I know one day I will look back at these moments as just the beginning. When it comes to autism, my definition of awareness is as fluid as the wind. Each marked change in time brings with it a new definition of awareness. At the beginning awareness meant feeling comfortable enough to say the word. The word I feared. The word I prayed I would never ever say or hear.
Yet still, the doctor said those dreaded words that sliced through the air and changed our family forever. Your son fits the diagnostic criteria for autism, he said. And although he kept speaking, I don’t remember much after that, except feeling shattered. My son has autism. The boy playing with the truck at my feet has autism. Greyson has autism. The words tasted like metal and it was impossible to think them without crying. I didn’t think we would ever be able to claw our way to a new normal. Yes, I’m calling to get an appointment for my son. He needs to be seen because… he… he has autism. And then the painful phone calls letting family members know. Greyson has autism. That simple and truthful sentence stole all my strength each time I had to repeat it.
But each time I said it- it also got easier and the tears came slower. I was able to push them back inside before they snuck out some of the times. And then one day- I couldn’t believe it-I could say autism and the tears just stopped showing up.
And then awareness morphed into learning as much as I could about autism; for my son and for my family. I read and read and read- in line at the grocery store, under the covers at night and while I gave Greyson endless pushes on the swing. I read everything I could: personal testimonies, scientific research, books and articles. I didn’t really understand what autism was and I knew I needed to get my PhD equivalent overnight. Through research I realized that autism is the fastest growing brain developmental disorder. Its prevalence is not affected by race, region, or socio-economic status. One in 68 children in the US are identified as having an autism spectrum disorder. I learned a new language that revolved around Behavior Therapy and special diets, bio-medical treatment and Speech Therapy. I was overwhelmed.
The typical challenges of being a parent are hard enough- making sure the kids eat enough vegetables and get enough sleep and make it to school on time. Being a mom to a child with autism infuses those challenges with the heartaches of communication disorders, social difficulties, struggles with behavior and a fierce resistance to change. It means trading T-ball practice for Speech Therapy. For us, awareness meant knowledge so I could do every possible to make sure Greyson grew up as happy and successful as he can be.
While mining the chaos and frustration of every daily life, I also found things I wasn’t looking for, AMAZING things like beauty and humor and hope. (So much hope.) I found an outlet in writing and I shared our story, chronicling a very public and emotional diary of our journey -from early autism signs through diagnosis and the daily battle of acceptance. My second born son, Parker was also diagnosed with autism. I found purpose in my life that I didn’t know was missing, connecting to an ever-increasing number living a similar journey. With one in 68 children being diagnosed on the spectrum, there’s an entire world of frustrated moms and dads who just want to feel a little less alone. I realized then that Greyson and Parker are perfect exactly the way they are, and life with them is a gift so incredible and profound that it’s impossible to explain. I knew we needed to give them therapy and all the tools available to help them so they could feel less frustrated and more understood.
They have taught me more about unconditional love, acceptance and hard work than I could ever teach them, even if I lived to be 1,000 years old.
They show me how incredibly beautiful it is to be exactly who you are instead of trying to conform to some made up society norm. As I stand in awe and let them be them- they have taught me how to be me. Awareness had morphed from research and learning into understanding, acceptance and connection.
There was still one group of individuals I was desperate to connect with. People who weren’t affected firsthand by autism. I needed them to see what I saw in my boys. When I became aware that I couldn’t change the fact that my son had autism, I realized that instead I would work relentlessly to change the world. I would change the way people thought about and talked about not only those with autism- but any group that is different and struggles for acceptance. When you shine a light on the places that are dark you take the fear away.
Because Greyson and Parker see and experience the world differently, the world sees and experiences them differently too. I needed people to see that although my children learn, communicate, play and behave differently- they are still amazing and have the same good soul as everyone else. They need extra patience and understanding. They have to work so hard to adapt to the world, but sometimes we need the world to adapt to them. I need you to teach your child about kids like Greyson and Parker everywhere.
I spoke our truth, sharing our journey out of an unfathomably deep chasm of despair to a plateau of acceptance towards fleeting peaks of happiness, mourning the death of old dreams and celebrating the birth of new ones. I shared what autism looks like and feels like for us. By sharing these hard-fought heartbreaks and victories I realized that you actually don’t need to have a child on the spectrum to relate to all the gorgeous complexities of life. Along the way I learned there is as much good in the world as I see in my boys and that the good always outweighs the bad. The strength and tenacity I see in my boys infuses me on a relentless pursuit of change and connection. We laugh, cry, teach, learn (and unlearn) while giving it our all, every single day. Awareness was the catalyst for recognition that life is a gift for each one of us. And just because it isn’t easy, doesn’t mean it isn’t good. It’s so darn good, in a million unexpected ways. We struggle and succeed. We fail and try again. We all are human and have so much more in common than at first I could have ever imagined.
Awareness begins the moment you open your mind and your eyes and your heart to a new way of thinking and oftentimes, a better way of being. Awareness is love, it is change, it is concern, acceptance, education, connection, understanding, and the reminder that we are all more the same than different. Awareness is research and funding and assistance for those that need it. Awareness is respect for the fact that we are all created differently, and we all have different challenges as well as different strengths. Awareness is a poignant reminder that we all have something to teach each other, and we all have something to learn from one another. Awareness is profound and simple and changes the world, two eyes at a time. Awareness showed me that autism was not the end of our world at all- it was just the beginning of something new.
What does awareness mean to you?