“Hey, come look at this.”
“Look at what?” I ask.
“This response I just got,” Heather, says to me.
“Response to what?” I ask.
“Remember how I got added to that support group?” Heather says. “I’ve been talking to an adult with ACC about what their life has been like.”
I get up from the couch and walk over to my wife, sitting in the kitchen, staring at her laptop. Tim, sitting quietly in his bouncer, starts cooing as I approach. I smile at him and he smiles back. He’s got this funny little grin that just gets me, and I stifle a laugh.
“Ok, show me the response,” I say. Heather points at the screen, and my jaw nearly hits the floor.
“No way,” I say, “that can’t be possible. Can it?”
The text of the message that Heather received is from a young woman in her twenties. She tells Heather that her parents had been embarrassed (their word, the message assures us) that their child had a disability, and so had hid the fact from her until she was a legal adult. This young woman relates to us how devastating it was to find out something so fundamental at such a late stage of the game.
“Not Tim,” Heather says.
I nod in agreement.
There will come a moment in the life of every child with special needs where they will figure out that they are different from their peers and will want to know why. This is a day of reckoning for parents, because, on that day, parents have a choice. What should they say to their child, and more importantly, how should they say it?
By the time Tim six months old, Heather had joined several support groups for the parents of children who have ACC (or, more generally, any Disorder of the Corpus Callosum [DCC]). Within a few weeks, Heather had heard the life stories of many adults with ACC, and her overarching conclusion was that parents who kept secrets about their child’s special needs created adults with a lower quality of life.
It became clear to Heather, as she spoke to these adults, that we needed to take a different path with Timothy. We didn’t want to hide his diagnosis from him, because there was nothing for him to be ashamed about. We wanted Timothy to know everything he could about ACC, and we wanted him to celebrate it. We believed that if we empowered Timothy with knowledge, and with support, that on the day that a peer teased him for being different, Tim would be able to proudly tell this person why he was different, and how much of a blessing that difference was.
But even more importantly, we wanted Timothy, when he was an adult, to be able to look at his childhood and know that we were proud of him and not ashamed. We wanted to make sure adult Tim had as many advantages as we could give him, and we wanted adult Tim to know that he had been loved unconditionally from the moment he was born.
How to tell him about his condition, and when to tell him became the question. Do you tell a two-year old about brain scans and Probst-bundles? Do you wait until he is ten and can fully process the science of it all? We decided, after much deliberation, to begin explaining this to Tim at such a young age that he would never be able to remember a day in his life when he didn’t know about ACC. We started by explaining in small ways, that his “thinker” was a little bit different from other people’s but that it was a good thing, because it made him special. Over time, we’ve come to refer to Tim’s ACC as Magic Brain, as in, “Tim has a Magic Brain.” We started with that when Tim was just about two years old.
Children’s book ACC and Me
At about that same time, we discovered a children’s book published one of the leading researchers at the NODCC (National Organization for Disorders of the Corpus Callosum https://nodcc.org/) called ACC and Me (here is the link to purchase the book, and support research into DCC https://nodcc.org/product/acc-and-me-book/). The book is written to help a child with ACC understand exactly what ACC is, and what some of the triumphs and challenges of living with ACC are.
The book was a tremendous blessing for our family, because it gave us the right tools to help Tim understand, and celebrate how unique and special his brain is. It also became a useful tool for communicating with Tim’s teachers (every year we send the book to his upcoming teacher, so they have a sense of how they can best positively impact Tim). Tim also reads the book to his classmates during Show-and-Tell, so that his classmates know why Tim might sometimes seem different. So far, all of the advocacy has worked. Tim’s classmates like him (he’s six, so of course playground arguments are still a real thing), and his teachers work very hard to provide Tim the resources for success that he needs.
July 2nd is International Disorders of the Corpus Callosum Awareness Day, and it was chosen because July 2nd is the middle day of the year. What better day to celebrate mid-brain awareness? And celebrate we do. In our family, July 2nd is a wonderful day to reflect on the many blessings we’ve been given, and how wonderful it is that Tim has a Magic Brain. But really, July 2nd is just an extension of something we do year round—celebrate our wonderful children, and teach them how blessed we are that they have unique abilities and challenges.
As a family, I think that it’s the most important thing we can do for each other—celebrate.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here.
Cover Photo: Merijn Hos