“I love him with all of me. I love him even when he hits me, when he screams at me, when he punches holes in the wall, when he throws an object across the room leaving a trail of broken glass, and even when he claws my arms in a storm of rage. If he were anyone else I would have left the relationship a long time ago. But he is my five-year-old son, and we are battling autism.“
In a boxing ring, two opponents square their jaws and prepare for battle; a timed battle that in the end, will have only one champion. The arsenal can consist of menacing shots to the kidney, bone-crushing uppercuts, and sometimes sucker punches below the belt that take their foes breath away. But when you enter the ring coming toe-to-toe with a brain disorder called autism, the fight is even more complex. Autism is a formidable heavy weight that is, incurable, with horrifying statistics, and a wide spectrum. How do tiny hands even begin to fight when words and emotions are trapped behind the exit door? How do I fight for my son and fight off my own anger, hurt, exhaustion, and fears?
Some days I struggle very hard to be enough. Some days I cry when my young daughters have to find strength and understanding beyond their years as to why he lashed out at them, or why strangers are looking at us awkwardly, or why we have to leave church, the grocery store, or the movie theater suddenly. Some days I just want the bell to ring…
I know this much about boxing. I know that between rounds there is much needed rest and a person called the corner man who advises, offers water, reduces the swelling, stops the bleeding, wipes the sweat away, takes the mouthpiece out so the fighter can talk freely, and prepares him or her for the next round. As a mother, and especially a mother of a child with special needs, this corner gives life and light to me. It’s where I breathe in and also vent. It’s where I listen and learn new strategies. It’s where I regroup, because throwing in the towel is not an option.
I am in constant communication with my son’s team of therapists and they have been more than amazing at finding what triggers his heightened behaviors, and then finding a way to deescalate them. We’ve started breathing exercises so he can find a way to calm himself down, a visual schedule so that he knows in advance what to expect, tight squeezes for his sensory diet, and because recently he spontaneously danced his way to a place called happy, we will add more music to his day. We also are finding new apps for communication on his iPad. That’s a sampling of what they’ve done for him and for me they keep the conversation honest and have on several occasions told me to take a break, before a breakdown. (Seriously, three of them sent me for an early morning manicure and pedicure.) #exhale
I continue to talk openly with his teachers, present and past, and there are hugs, high-fives, and hallelujahs, for just how far he’s come. In my corner are my closest girly-girl friends who journey with me as sisters, I call them that. They intentionally make sure our conversations extend past autism, because even though it is a big part of my life, it isn’t all of my life. We talk about everything from beauty and aging, to the political climate, to our new finds at a lingerie store. These conversations remind me that I lead a multifaceted life, and my friends help me celebrate that always. Our families on both sides have unselfishly given much of themselves to lift our spirits, and we are grateful for their presence.
If life would have it that I would be chosen to be mother of a child with special needs, then I am certainly grateful that my husband and daughters were chosen to journey with me as father and sisters to my son. Some days I watch their father-son bond, and I am strengthened by that genuine beauty. Walks to the park, bedtime prayers, frequent visits to the school, and spontaneous games of tag, remind me that I do not fight alone or love alone.
Someone asked if I thought autism, though incurable, was undefeatable. For me, continuing to fight is winning. Not throwing in the towel is winning. Going to your corner and asking for help, advice, new strategies, respite programs, and support groups, is winning. Simply not giving up is winning. And when you’re winning, you have not been defeated!
I know that my fight is not against my son, but for him. It’s for his peace, for his wholeness, for his chance at the best life he can live, and round after round that will always be worth fighting for…
As a parent, have you ever felt like the opponent you were facing was one you couldn’t beat? Where did you find strength? Who was in your corner?
More from GEM:
Sarena James is a writer and enjoys the sanity that brings. When her son was diagnosed with autism, she started a blog www.onaisle9.com, which became her platform to advocate for families of children with special needs. It serves as a forum for conversations and a place to exchange ideas…judgment free.
A married mother of three beautiful children, Sarena’s other passion is theater and she has served as theater coach and consultant for the public school system. When she’s not on stage you may find her script writing for future performances. Originally from Aurora, Colorado, she is a Paine College graduate. She and her family currently live near Charleston, SC.