Pulling Together to Bringing Awareness
March is Cerebral Palsy Awareness Month
Olympia, WA March 15, 2018: PestStop Pest Control is bringing awareness to Cerebral Palsy during the month of March by wearing green boot covers and sharing the story of how Cerebral Palsy affects one the families at Chuck Sullivan Exterminators. About 1 in 323 children has been identified with Cerebral Palsy according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM). We have found that not many people really understand what CP is and although they may not expect to hear about it from their exterminator we are happy to start the dialogue.
“What is Cerebral Palsy?” I said it over and over in my head as I stared blankly at my son’s physical therapist. I couldn’t say the words out loud. I could feel a ball in my throat blocking my vulnerable new mom voice. My baby boy and I had been through so much in the last few months I didn’t think I could take one more curveball. I listened to his therapist list off the potential problems we could encounter: loss of muscle tone, gross and fine motor functions, balance, control, coordination, reflexes, and posture. Oral motor delays or dysfunction, like swallowing and feeding difficulties, difficulties in speech, and maybe facial muscle tone as well.
The therapist took a pause and let me soak it in. After a few moments of silence, I broke. The ball in the back of my throat turned into uncontrollable sobs and tears. I wanted my mom. I wanted my husband. I had never felt so alone. The tears slowed after a few minutes and Charlene, my son’s therapist, handed me a tissue as I picked up my chaos of emotion off the therapy mat. I took a deep breath, cleared my throat, told myself to pull it together and then finally spoke. “So what do we do?” She smiled and said “That was a good start.” She explained that mourning the loss of “normality” was important. And just like any loss, the pain may not heal- but we move on and continue to better our lives and circumstances. She told me that to help Charlie I needed to help myself and find a support system.
At the time I didn’t know that this was going to be a fundamental part in my journey. In just a few short weeks She became more than Charlie’s physical therapist, she was my reassurance in the big world of the unknown. Mrs. Charlene was retiring a few short months after we began our therapy sessions, moving us on to other therapists, but I am so very grateful for having her coach me through those first rough months of adjusting to the life of a CP mom. Charlene helped me find resources i didn’t know I had at my disposal.
Washington State has a Department of Early Learning (DEL) and through them I found an early intervention program to help us with preparing for preschool. They had resources about transportation to and from our multiple doctors and therapists if we needed it or how to file for disability if we were having trouble financially. They put us in contact with our local elementary school and we were able to start having in home therapy sessions instead of driving 45 minutes to the closest therapist. I was able to find help in the areas I needed it most, and it made the burden of being a CP mom so much lighter. I went searching for a CP mom support group and couldn’t find one in my area. I turned to Facebook and found several I could be a part of.
Even as I was typing it into the Facebook search bar I felt silly searching for one but once I found them I was so glad to be a part of a community that really got my struggle. As a family we continually need to choose to pull together instead of letting the struggle pull us apart. We figure things out at a time, trying not to put too much emphasis on what we think Charlie can do but let him show us that overcoming obstacles doesn’t always look the same for everyone.
Though I have had my rough seasons, because they come and go, I have found immense joy in our journey. We celebrate big when we cross a milestone! From jumping to writing his name and now the big task of potty training is our current hurdle, but we will get there- it just takes more time than some others.
Our therapists have taught us how to incorporate his exercises and stretching into our daily activities and with persistence and a good attitude we’ve made it a long way. He can dress himself (though not always matching) and feed himself (though not always without a mess), and (though not the fastest) he is able to run jump and play with all his friends at school. In a lot of ways, I have found that Charlie is just like every other kid- making the most of his talents and abilities, figuring out what this thing called life, is all about.