The Secret World of Autism with Finding Cooper's Voice
I never thought I would have a child with autism. Stuff like that happens to other people’s children. Not mine. Even today, sometimes, it still shocks me. My son is seven. He doesn’t talk. He doesn’t attend public education. Our life is different.
I want you to know I knew right away. I knew the day that I brought him home from the hospital that something was different. I felt it in my gut. And then my head. But my heart…that took years.
Cooper was diagnosed with autism at age three.
I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I done during my pregnancy. I hated my body for failing this child. I felt every single emotion possible but they were flying at me so fast I couldn’t actually make out one from another. It was a tornado.
Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.
My little family was at the center. Me, my husband and our beautiful son.
I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him, then this would be fine. I could outrun Autism. I knew I could. No one had to know. This is called fight or flight. And it’s the grossest feeling ever. It’s not logical.
But the oddest feeling of all is how paralyzed I felt and yet the world kept going on around us. We were different. Everything was different. But yet my child was not. He was the same. The diagnosis didn’t change him in anyway.
Suddenly I felt like a stranger in my own life.
I remember going to the appointment. We got the diagnosis. We left the appointment. We told Grandma and Grandpa. We tried to answer questions about next steps and the future. Did we know if he’d ever talk? Did we know if he’d ever graduate high school, live on his own, get married, have babies?
The whole time I was dying on the inside. I didn’t know the answers to any of their questions. I didn’t know if this was going to be alright. I was suddenly expected to be an expert in something I knew nothing about.
I remember I cried. I hugged my spouse. I tried to talk about the unknown future but he wasn’t ready.
And life went on. I fed my child dinner. I gave him a bath and put him bed. I hopped on Amazon and ordered five books on autism. I joined a special needs parenting group on Facebook. I googled ‘Autism Misdiagnosis’. I got into bed and I let it all out. I cried so hard my husband didn’t know how to console me. I thought about how the Psychologist had to be wrong. She didn’t know Cooper. She didn’t know my determination or my love for my child. She was wrong.
But I knew she wasn’t. And that was the hardest part. It was real and it was a force I couldn’t stop.
I’m telling you this because beginnings are the hardest. Autism is not the end of the world. It’s just the end of the world you pictured. And once you make it through the hard parts a beautiful life will emerge.
Today, my son is seven. I am long past grieving the diagnosis. My son is funny and adorable. He is still nonverbal and on the severe end of the spectrum. I still don’t know the answers to the questions that were thrown at me when he was three. His future is unknown and I spend much of my time worrying. But throughout all of it, my son has taught me so much. He has taught me to be strong. To advocate. To love unconditionally. To never give up hope on our darkest days.
I learned that I have the strength to do this. I became stronger than I ever thought possible. My skin is so unbelievably thick and I became the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.
I learned that I don’t have to fight autism. Or carry the torch against it. But I do have to fight for the best services possible for this little person that is completely and solely dependent on me. And good god I have felt isolated and alone because of this disability.
My message to other parents? I won’t lie to you and tell you that this life is going to be easy. I won’t lie to you ever. Being a special needs parent is hard and scary and lonely. But it’s also loving, happy, joyous and amazing. I want you to know that you can do this. You are not alone.
I encourage you to follow my blog at www.findingcoopersvoice.com and on Facebook. I have built a community of hope and love that gives a glimpse inside the secret world of nonverbal autism. Our story isn’t always beautiful. It’s often heartbreaking. I share the emotional highs and lows and struggle and beauty that come from them. But at the center, you will see a little boy surrounded in love and joy. And I guarantee he will make you smile.
You can support Autism Awareness this month by shopping Sevenly's collection, with pieces designed by Kate Swenson herself, the beautiful, brave mother behind Finding Cooper's Voice. #BecausePeopleMatter