I always knew there was something different about Debbie. She began special education services through our county’s Infants and Toddlers Program when she was 2 years old. However, she was not formally diagnosed with autism until age 5. Now, I could tell you that I was ready to conquer the autism world from the beginning. I could tell you that I was ready to be the Autism Warrior Mom that Debbie needed. But the truth is that I was not. Even though I knew Debbie was not developing typically and was missing many of those oh-so-important milestones, I was not ready to slap a label on my daughter. I was not ready to use what I deemed the “A word.”
My husband and I walked into our first IEP meeting and soon heard these three words: isn’t, can’t, won’t. Debbie isn’t talking. Debbie can’t use the toilet properly. Debbie won’t play with other children. I was sad. I was angry. I was devastated. My husband, on the other hand, went right into battle mode. And, on the day we got the final report from that meeting, he said three life-altering words to me. While I was crying over Debbie’s life gone awry, Vince said, “Debbie is still Debbie.” What? Say that again. “Debbie is STILL Debbie!!” He continued, “We have always known that something was different with her. I know you don’t like having a label slapped on her. But at the end of the day ‘autism’ is just a word. She is still our daughter. We still love her. We are still going to help her and fight for her. And, Julie, you can either choose to play the game or you can watch it from the sidelines!”
I dried my tears, dusted off my battle gear, and joined the battle! Vince was right. Crying wasn’t going to change anything. Crying wasn’t going to solve anything. Crying wasn’t going to help Debbie. Debbie needed me to guide her. Debbie needed me to be not just her mom but her Autism Warrior Mom. We had hit a traffic jam on the road of life. It was time for me to take us on an alternate route, and I was not going to let my strong sense of direction fail us.
Together, Vince and I turned isn’t, can’t, and won’t into is, can, and will. We worked with our local elementary school to help design an inclusion program for Debbie. Soon, when we walked into meetings, we heard three new words: is, can, and will. Debbie is learning to speak and use her words to meet her wants and needs. Debbie can use the toilet properly. Debbie will engage with her brother in a game of chase. Are these miracles? No. They are small milestones, and along the way I have learned that those small milestones can turn into big ones.
There will be bumps in the road. There will be potholes in the highway. There will be roadblocks. However, our job as parents is to find ways to go around those bumps, potholes, and roadblocks. We need to stop and savor the little things because one day they will become big things. We need to jump in and be a part of the game. And then one day we will stop and look around, and we will see that isn’t, can’t, and won’t turned into is, can, and will.
xoxoxo ~ Julie