April 2, 2023
World Autism Day
Today is World Autism Day.
This is our 12th one. As my son has gotten older, the meaning of the day has morphed for me. It used to be about education.
Today, it’s about celebrating. Celebrating differences, celebrating progress, and celebrating a boy who has climbed far more mountains than I have. And ice cream and dancing.
I have three boys and a girl. Four crazy, wild, busy, smart kids. Each of them is exactly who they are supposed to be.
My oldest is autistic. There are a lot more words used to describe him too. They are written on a piece of paper shoved in a drawer. Words that make me sad to read all in a row. They feel heavy like a weight when I do.
And while they are true, they don’t mean all that much to me as his mama. Not anymore. For too many years I let those words predict his future. I let those words consume me. And I lost my joy for a while.
Not anymore. They do not determine his future. They do not determine his worth. He is exactly who he is supposed to be. Who he was born to be. And I promise you he will have an amazing life.
Do you know that when my son was diagnosed with autism at age three, not one person told me anything positive about autism. Not one. No one told about the absolute joy he would bring to the world. About how he would learn to type words into his iPad and put on his shoes and knock on a stranger’s doors asking for paper.
They only told me about the hard. And the scary. They told me about the darkness. My son is the light that everyone needs in their lives.
And just like our family, autism is woven into him. Invisible seams sewn throughout his arms and legs with rays of color and light and sound peeking through. His autism can’t be separated from him because it is who he is.
He smells like the wind. He always has sticky fingers and little pieces of cookie in the creases of his mouth. He loves the number 17. And the hoot of an owl. He almost always puts his shoes on the wrong feet. He loves holding hands. Waving is his favorite.
He isn’t a big talker. He isn’t a big joiner. I wouldn’t call him a social guy. But when you least expect it he will give you a hug or a high five and you will feel like the king of the world.
I would take away his pain and frustration in a heartbeat.
We have hard days. Unbelievably hard days. Parts that I don’t share with the world. But they are there. And they set us back. But every day we get up, believing it will get better.
Last night he kicked a soccer ball three times with his dad and I. We ran around the road cheering with our arms up in the air like he’d just scored the winning goal. It felt like he had. Because he played with us. We live for those moments.
I pray that one day he makes a friend. A real friend. I pray that someone comes to my house to pick up Cooper and they aren’t a paid employee. I pray they go do something fun together and when he gets home he can tell me about it.
I pray that when his father and I pass away, we are confident in his care. I pray that he has a village around him. I pray that when I take that last breath, I know that he will be loved and happy.
I worry every single day about his future. Some days the worry is a fleeting thought. Some days it is crying in the shower as I think about who will treasure him after I am gone. The worry will consume me if I let it. I just have to trust. I have to trust that it will be okay.
I have to be brave like Cooper.
My dream is to show him the world. I want to take him to concerts and on roller coasters and on boats and airplanes. But honestly, I don’t know if that will ever happen. It may not. But I’ll tell you this, we will never stop encouraging him to try new things. To get out of his bubble. Because the world needs to know him and see the gifts he has to offer.
Please people outside of our world, keep educating yourselves about autism. Learn as much as you can. Teach others. Teach your children and your own parents and your neighbors. Tell them about the blonde haired, ruddy eyed boy from Minnesota who doesn’t talk and loves trains.
Say his name if you have too. Cooper.
So today, on World Autism Day, I ask you this. Think about how you would react if you saw my Cooper sitting down in the checkout line at Walmart holding 47 pieces of paper or sliding on his belly like a penguin at the park or dancing in the street?
Would you be kind? Would you give a smile? A wave? I ask that you do. I promise you we will wave back.
Today our family went to the sensory friendly time at Chuck E. Cheese. We spent this World Autism Day just as we should….immersed in autism. One with happy hands and hugs and noise and chaos and parents like us.
Today, we celebrated our boy. I invite you to do the same.
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.
