The first time Shannon Pulaski talked about family genes with her twin daughters, they looked at their denim pants in confusion.
“No, not those jeans; the ones in your body,” she explained with a laugh.
“We approached the idea of genetics keeping it really simple,” explains Pulaski, author of “Mom’s Genes: Empowering children to learn about their family’s health history,” published by CURE Media Group in 2018. Pulaski, a New Jersey-based attorney and patient advocate, spoke recently by phone to HealthCentral.
“We started with: ‘You know mommy has blue eyes and so do you. Where do you think you get them from?’ One of my daughters has these adorable little freckles and we’d point to them and say, ‘Those come from family traits.’
“We let the conversation move in an age-appropriate way, with the intention of adding blocks to that knowledge, creating a science lesson out of it, but always making sure they’re getting it on a level they can understand.”
Her daughters, now 7, and her son, 4, began drawing pictures about all they had learned. One day she looked at the collection and thought, “This could be a book.”
Right around the time the twins were born, Pulaski’s mother was diagnosed with ovarian cancer. She had a BRCA (BReast CAncer gene) mutation, which put her at high risk for both ovarian, breast, and other cancers. Shortly afterward, Pulaski learned that she, too, had the same gene mutation. She’s since undergone prophylactic surgeries to prevent getting these cancers.
Why she wrote the book
Last year, Pulaski’s children’s book, for ages 4 to 8, was published. Her goal for the book was to help parents share their family health history and encourage children to establish healthy behaviors at a young age.
“Knowing that there is a history of cancer in the family should be something that children are aware of from the start,” she says. There should be a steady incorporation of information so that “there’s not one day when they get this information and it feels like they’ve been hit by a bus. If it’s slowly incorporated, it will become part of their thought process and help them cope and develop positive proactive behaviors and a healthy lifestyle as they grow.”
That’s how it is for her children. “In my family we understand that we have a genetic mutation that can lead to cancer, so it’s really important for everybody to make sure that they’re eating correctly, exercising, and opening lines of communication with a health care professional.”
To encourage that, she has changed her tactics in the doctor’s office. “When we go to the pediatrician, I’m starting to have them talk a bit more than I’ll talk.” For example, she says, “If we go in with a sore throat, I ask my daughter to tell the doctor what’s wrong so she develops the confidence and voice and relationship with her health care provider.”
Even though it’s not always easy to talk about such heavy topics as illness and disease with children, it’s important to explain why Mommy has so many doctors’ appointments or why grandma is always so tired.
Kids catch on fast, Pulaski says. And don’t think that just because cancer, heart disease, or other health issues aren’t discussed, that your little ones aren’t aware. “They’re very in tune with what’s going on in the house, even if they don’t understand it.” Be prepared for questions and comments to arise at the most awkward times — in the supermarket line or on a crowded bus.
And sometimes long after your initial conversation. “One morning, I was brushing my hair and my daughter asked how I was feeling after my surgery, which had been months ago,” she says. “I told her [I] was doing much better. Clearly it was something she was still processing and thinking about.”
Such conversations about genetics and DNA are never meant to create unnecessary worry or anxiety, she says. In fact, the book approaches the subject in a very matter-of-fact way. For example, one page reads, “Mom says learning our history will help me to see that knowing myself is the key to staying healthy…. Lucky for me I’ll be able to share the story of my genes so my family can help me understand what it all means.”
Pulaski says that the focus is “not on fear and statistics. We want to turn the thought process to what is my body like, what’s normal and if it’s not, what do I do.”
She knows that not every family is ready to tackle such tough topics. The book is just “one tool in the toolbox” to help introduce the concept of familial genetic predispositions.
“Discuss what you think your kids can handle and at what age,” she says. “As they ask questions, you can add on. It’s all very personal and you have to know your family, your kid, yourself.”
Future books will continue theme
“Mom’s Genes” is just the first in a series Pulaski has planned. Subsequent books will focus on more complex topics like genetic testing. One will explore a family’s discovery of a genetic mutation. Each book will be aimed at a slightly older audience. The books will relate to any genetic mutation or disease that may be in a child’s gene pool.
Her hope is that her own children and others who read the books will benefit from the idea that “knowledge is power. By owning the information and educating themselves, [our children] can be proactive about their health and have long healthy lives.”
What more can a mother wish for?
See more helpful articles:
How to Talk to Your Children About Your Cancer
How to Tell Your Family They Might Have a Genetic Risk for Breast Cancer
How to Learn Your Family's Health History and Why It Matters