“Mom, why is my sister different from other kids?”
I froze with a spoon halfway to my mouth. My 5-year-old son was looking at me expectantly while picking glumly at his dinner. I was alternating between feeding his older sister, and myself, bites of dinner. As a child with complete agenesis of the corpus callosum, a chromosomal abnormality and a host of other diagnoses, my daughter could not feed herself. I paused to explain the diagnosis to him as I had before, by saying her brain was made a little differently.
However, I wished that there was some resource I could use to explain to him, to his cousins and to her classmates, why she did things differently. I had searched online for a children’s book that explained her conditions. I was seeking something kid-friendly, fun and educational that celebrated individuals with ACC just the way they are. In the words of Temple Grandin, the well-known author with autism, the book should show that kids with ACC /HCC are “Different, not less.” I wanted something written not by a clinician, but by a parent – someone who had lived with and loved a child with developmental differences.
Someone should write one, I thought to myself. Then it hit me. I could be that someone. That’s how the “Kids Like Me” series was born.
“ACC Kids Like Me” is a fun rhyming story about a boy with ACC. His friends zoom away in race cars on a super highway to the other side of the brain, but our ACC hero cannot follow because there’s a gap in the road. He must become an explorer, forging a new path through the jungle to the other side of the brain in his own way. He gets there, but it takes him a little longer. In a simple way, the book explains what ACC is, some challenges people with ACC may face and why they’re ultimately just wonderful kids like any other.
The other books in the “Kids Like Me” series are “Chromosome Kids Like Me” and “Tubie Kids Like Me”, which focus on explaining chromosomal conditions and feeding tubes, respectively. I am working on more children’s books focused on developmental disabilities and health conditions now. My other writing includes “Playing in the Mud: An Amateur Farmer’s Guide How Not to Farm”, a humorous, light-hearted memoir of our family’s adventures starting a homestead while raising a special needs child. With a goat who thought he was a dog, a swimming llama, a temperamental emu, a club-footed duck and a host of other unique animals, farming showed us how differences are a natural part of the world. I left my career as a professional speechwriter after my daughter was born. Going from writer to special needs mom to farmer and back to writer, the book shares the story of how a parent of a disabled child can still pursue their dreams after a diagnosis.
I’m hoping “ACC Kids Like Me” can help children feel good about seeing themselves or their sibling represented in print, and help parents have a positive resource to teach others. I also find it can be comforting to hold something in your hand that connects you to other families living with the same condition, and remember that in no way are we alone in this journey. By finding support through organizations such as Corpal and using resources such as “ACC Kids Like Me”, families can find an easier way forward in living life with the diagnosis, not in spite of the diagnosis.
It can help us remember that alone we may be rare, but together we are mighty.