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By Nora Lowe
Children are notoriously curious, asking questions such as “Why are the trees green?” and “Why is the sky blue?” But Erica Blit, a Harrison resident and mother of two, was posed a more difficult question by her daughter Skylar before she reached her second birthday: “Why doesn’t Brandon talk?”
Skylar’s older brother, Brandon, has a rare genetic disorder called MED13L. After being born prematurely at 30 weeks, Brandon spent the first three months of his life in the NICU at Columbia Presbyterian Hospital before receiving care at Blythedale Children’s Hospital in Valhalla for about six weeks. Brandon came home with a trach and feeding tube.
Also associated with the disorder are certain behavioral traits, such as being nonverbal.
That information may be a lot for a younger, albeit curious, sibling to absorb.
Blit said she believes curiosity is both positive and to be expected.
“I always welcome questions from kids. I think that’s natural,” she said. “Lots of people shush them, thinking they’re going to offend somebody, but if things are asked in a nice way, there’s no reason not to ask.”
Hoping to explain things to Skylar in the best way possible, Blit contacted the psychiatrist working at Brandon’s school for some advice. They then worked together to create a simple book explaining, “this is my brother Brandon, and this is what he does and doesn’t do.” They also added a couple of photos of Brandon and Skylar, who are now 14 and 10 years old, respectively, and it quickly became one of Skylar’s favorite books.
That experience motivated Blit to establish and found My Heart Books in 2019. She offers pre-made and customizable stories about differently-abled characters.
During Parent Day at Skylar’s preschool, Blit decided to read the newly-created “My Brother Brandon” to the class because “empathetic kids just have such greater success in life.” Also, early exposure is crucial when educating children about respect and understanding, Blit said.
It was such a positive experience that she started running similar workshops at the school every year.
The epiphany came, though, during a visit with family friends. Brandon “loves being around people” and was tagging along with their friend’s son of comparable age, but he was finding Brandon’s presence off-putting and became aggravated. The parents of both children tried to de-escalate the situation with no success. Then Blit pulled out the “My Brother Brandon” e-book on her iPhone. Soon after she read it, things improved rapidly.
“We read the book, they love it and the little boy’s attitude totally turned around,” Blit recalled.
Witnessing the power of storytelling to change perceptions of disability was the true “a-ha” moment for her.
“There are so many kids with different challenges and different disabilities, and wouldn’t it be great if there was a way for everybody to have a book like the ‘My Brother Brandon’ book?” Blit wondered.
My Heart Books’ mission to make books easily accessible for everyone. The project helps families of differently-abled children and adults create a storybook about them. This is a helpful tool for teaching others about the individual’s medical and behavioral challenges, but also highlights what makes them special and loved.
Four other titles were created by Blit, each addressing a different health challenge, based on families having used My Heart Books’ custom template on its website.
They are “My Aunt Helen,” about a woman who is unable to walk and is deaf; “My Cousin Ryan,” who is blind, among other challenges; “My Friend Samantha,” about a girl who has a learning disability; and “My Son Evan,” who is autistic.
Blit noted that high-quality children’s books about disabilities, especially ones that don’t generalize, are “few and far between.” The customizable and individualized offerings of My Heart Books are designed for those who don’t “fit in a box.” For example, before Brandon’s genetic diagnosis, he was labeled with the term “global developmental delays.”
My Heart Books serves a community of people who might not fit perfectly into a predefined category, she said.
Blit, who has a marketing background, used her expertise in establishing My Heart Books. It has a national market range and on-demand printing, which helps the company reach a growing audience.
To customize a book, the My Heart Books website includes a simple questionnaire with inclusive, comprehensive drop-down menus and photo/illustration options, taking about 15 minutes to complete. The resulting book can be purchased as a softcover, hardcover or e-book. My Heart Books also offers a number of pre-made selections for the general population to learn about different types of disabilities. In addition, they offer social skills classes and maintain an expanding Ambassador Program.
“The thing that is really important to me about the books is that they don’t just focus on what’s difficult for the child,” Blit pointed out. “These are their challenges, but here’s something that they’re great at and isn’t it amazing how this person works extra hard to do all these things that are so easy for us? And this is what I love about them.”
“I think that’s the story,” Blit said. “Somebody is not just their disability. They’re so much more, and that’s what people really need to see.”
To learn more about My Heart Books, visit www.myheartbooks.com.
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