Cameron and Zeke "Alone-Together"
Photography by Randy Bacon
As told by their mother, Cara
My daughter was born riding shotgun with a map in her hand. She was handed an autistic brother and a terrified mother, and she has met both challenges with a war cry and intense focus I could have never taught her. Cameron came out with her cord around her neck, sideways, and screaming like a victorious little fighter that had just won a hell of a battle. She was already so different from her brother, Zeke, who was nearly silent when he was born three years earlier. I knew I had a warrior on my hands the minute I saw her. She had fiery green, alert eyes that stared right back at me as if they were saying “Now what?”.
As her brother got to know her during those precious early months, I saw them connect to each other in a way I figured was pretty normal for siblings. He cooed at her, “read” books to her, and she watched his every move. As she grew, they got closer and their sibling bond became much more. He called her “Baby,” made her sleep in his bed, showed her how to use his computer, and hugged her every chance he had. Furthermore, as far as Cameron was concerned…her brother hung the moon. She toddled around closely behind him with all the might she could muster. She ate everything he agreed to eat. She spoke just like him. She laughed when he laughed, she looked to him for every reaction, every opinion. Every choice her growing mind made was made with Zeke in mind. She was as madly in love with her brother as a little sister could get. Zeke was her hero.
Cameron was just 6 years old when her father left and to this day I’m not sure I will ever completely know what the experiences of what we endured with him in our lives did to them. But we had a bigger battle hit us because it was at that time that Zeke was diagnosed with autism. He was considered to be high functioning and had been in speech therapy since he was 3 years old, so at the time the adjustment was pretty small. He started therapy, I began educating myself, and we moved forward with our new adventure, just the three of us. It was somewhere during this point in our lives, that I am convinced Cameron realized what the fire in her was meant to burn for.
As they both grew older, Zeke’s needs changed, and his therapy intensified. This was when Cameron began to notice her brother was different from the brothers of her friends. Zeke walked on his tip toes, and he shook his head a lot…even if he wasn’t disagreeing with her. Zeke couldn’t wear the same kind of coats that she wore, because the coats “sounded funny” to him. He ate the same food at every meal, and sometimes he had a hard time remembering to use the bathroom when he was supposed to. He could play video games for much longer than she could and had a lot more trouble in school. Cameron watched her brother struggle where she did not. She noticed his hesitation in things like making friends, developing new interests, and wanting to do well in school...things she felt a pull to do. But where most preteen girls would have run ahead and left someone like Zeke in their dust, Cameron reminded me that she was not most girls, and she slowed down to meet his pace, just as she did when they were in diapers.
Zeke was never left out, he was never ignored, and he was never sent away while Cameron tended to her own needs. In fact, I’m not sure the term “alone” includes Zeke when it comes to her. They are content to be alone, together. She never once thought about not including him in her birthday parties, often encouraging me to have joint birthday parties for the both of them. She kept her circle of friends small, and was interested in the same things her brother liked. She introduced him to everyone, proudly. She made sacrifices for her brother that grown men wouldn’t make, like leaving pools early because Zeke’s skin got too itchy, or coming home from slumber parties if he wanted her home, or eating the same thing every night for dinner.
She checked on him when he was having a bad day. She told him his picky eating made sense to her, because she “doesn’t like it when her food touches either.” She wore coats that didn’t make the noise he hated. And when we went to the beach, Cameron made sure the sand was off his feet. She learned to make his favorite sandwich while they stayed home after school, because she knew he didn’t have the patience. She showed him how to empty the dishwasher, tie a garbage bag, and made sure he washed his face as often as she remembered to do the same. And when Zeke was beat up on the bus during his last week of middle school, Cameron had the names and home addresses of each child who had done the hitting before I could even get home to them.
Before long, Cameron had done more than just met Zeke’s pace - she had sped him up. Zeke began making friends as his confidence grew. As Cameron helped with his homework, Zeke’s interest in some of his subjects increased; and he developed some interests of his own. When Zeke began to show an interest in hiking, Cameron helped me find a way to comfort him in the new terrain. “Let’s get him red hiking gear, mom, that’s his favorite color and he’ll love to wear it.” When Zeke found a new game to play, Cameron dove in head first to be his Player #2. Every time.
Autism isn’t something any parent plans for, and to this day I still don’t know how to fully navigate it. But there are books, there are workshops, and there are precedents to look to for when parents need the guidance. What there isn’t, is someone to show you how to be a sibling to someone with special needs. The patience Cameron shows my son, and kids just like him is extraordinary. The knowledge she has about her brother’s disorder doesn’t come from any book or article I’ve ever read. I had to go to support groups, and join newsletters and find advocacy programs to gain the knowledge and the stamina that Cameron has come by naturally.
She has shown complete fearlessness, dedication, and maturity in the face of what her life became when she was just a baby. Advocacy is in her DNA. In her 11 years, she has always run to be by the side of a neighbor with Downs Syndrome, or a nonverbal friend with epilepsy. She seeks out those who don’t have a voice as loud as hers in any room. She adopts every sick pet she and her brother find, she holds every baby, and she pushes herself to learn to cook/clean/lift/carry/protect every single thing she can. And she doesn’t do this out of pity. She doesn’t complain or martyr herself. The unrelenting and ferocious guard she stands for in the name of what is right and what is kind gives me all the hope I need for her and for her brother. Cameron is an indispensable force in my life and in the lives of every person she loves. She has made herself that way out of her sheer desire to be helpful.
I once read a quote from Mr. Rogers that said, "When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of "disaster," I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world."
I would have never, for as long as I lived, dreamed that Cameron was going to be part of my life. Nothing about her was planned. But in all the ups and downs of my life, I have had so much more than just a daughter. I have had a helper all of my own, and a best friend. The world is immensely better with a girl like her in it. I will forever stand on the front lines of whatever battle she has chosen to fight. From my daughter, I have learned that kindness is a weapon, and a strength, and something to be incredibly protective of. To be gentle and to fight CAN be the same thing. Cameron has become a hero to me, and to her brother, in ways I’m not sure she will ever realize.
