ALEXANDRIA — Beth Leipholtz of Alexandria wrote an illustrated children's book that tells the real stories of 26 real children dealing with different diagnoses. Each child's name represents a letter of the alphabet. C is for her son Cooper.
When Cooper was born, there was no inkling of any underlying issues. He did have a streak of white hair, but Leiphotz and her husband Brandon Carlson assumed it was a "birthmark type thing." Cooper did not pass his newborn screening, but the doctor only casually mentioned it in passing.
"It's also not super abnormal for babies to not pass it just because, you know, fluid in the ears and that kind of stuff," said Leipholtz. "So it was kind of in the back of our heads. We didn't think a ton of it."
Leipholtz was curious about the white streak, though.
A few weeks after coming home from the hospital, she began researching to see if anyone else's children had something similar. What she found is that the streak could be an indicator of Waardenburg Syndrome — a group of genetic conditions that can produce sensorineural hearing loss, changes in pigmentation of the hair, skin, and eyes, craniofacial alterations, musculoskeletal limb abnormalities, and Hirschsprung disease.
ADVERTISEMENT
According to the Mayo Clinic, it accounts for 1% to 3% of all cases of congenital deafness.
"We got his official diagnosis when he was six weeks old — that he was profoundly deaf," she said.
"At first you go through those five stages of grief to an extent," Leipholtz said. "It was hard for me to realize that because you don't want to feel like you're grieving your child who is otherwise healthy, but you're still grieving the normalcy that you thought was going to be parenting. I can talk about that now and understand that it's a beautiful thing in a way. There are still days where it's a little bit harder to wrap my head around, or I see him with his peers, and it's hard not to play that comparison game. But early on, those first couple of days were hard. It was more just out of fear."
They discovered he was a candidate for a cochlear implant and they started using sign language right away.
"It just really opened up our world to the modes of communication that are available when it's not a typical linear path," Leipholtz said. "It's just part of who Cooper is now. And as far as how it affects his daily life. I mean, honestly, I've had so many people telling me that you wouldn't even know he was deaf if you couldn't see his implants, he talks a mile a minute, and he never stops talking. He repeats everything. He was just obsessed with sound. It's cool. It's amazing."
The feelings that came over her as a parent led her to write her first book, " Hello, Holland: The path to embracing your child’s hearing loss ," which tells her family's story and the emotions that overcame them after finding out about Cooper's hearing loss. She also began telling the story through social media like Tiktok and Instagram . She soon earned a significant following.
Through social media, Leipholtz said people from all over started sharing their stories with her. Stories of parents with children dealing with disabilities and diagnoses. It inspired her to write her second, "The ABCs of Inclusion." It follows the stories of 26 real children of different genders and ethnicities all with different diagnoses and how it affects their lives with the purpose of educating others to create a more accepting and knowledgeable world for kids.
"The things that were important to me were representing both genders equally, representing a variety of diversity in general and obviously, different diagnoses," Leiphotz said. "But, you know, each child had to have that first letter of the name. So it was easy filling in the first 10 or so. Then it was like, 'oh boy, like kind of a puzzle.'"
ADVERTISEMENT
Leipholtz works fast, though, when she sets her mind on something. She said the
whole process of finding the children took about a month. She said finding a child to represent X was surprisingly easy. U was the hardest. But, harder than that was the actual writing.
"You think kids' books and you're like 'Oh, those are probably really easy to write.' It's just different," she said. "You have to be very succinct when you do it. Taking these complex medical diagnoses and trying to bring that down to a kid level and also keep it short, that was really challenging."
The book covers a wide range of diagnoses from autism, anxiety, blindness, cerebral palsy, deafness and diabetes to epilepsy, fragile X syndrome and Goldenhar syndrome.
"I think for me, as a parent, or any parent, just wants their kids to be accepted and loved for who they are," Leipholtz said on why she wrote the book. "Watching Cooper grow up, he has no idea that he's different. He doesn't know if other kids have implants or not. And honestly, kids have been much more accepting of it than I would think. They just don't notice it half the time. But when they do, they're really curious. And so I know there are so many other kids out there who have maybe more obvious things... And I want younger kids to have that reference point to be able to be like, 'Oh, that's like you so and so in the book,' and take a little bit of that fear out of it. And also be able to relate and be like, 'Oh, I know what those are. Those are implants. This is how you hear because you can't hear without them.' So I think that that's my main driver. To create a more accepting, but also knowledgeable, world for kids."
Right now the book is still in its
Kickstarter
phase, which has been very successful.
The goal was to raise $10,000. As of today, it has earned a total of $50,814.
"Yeah, that's blown me away, honestly," Leipholtz said. "My goal was never to benefit from this financially. I just wanted to do it. I've covered the costs out of pocket to this point. I just wanted the Kickstarter to reach that goal so I can print the first run and have that covered. Already, I think I'm going to have to print triple what they usually have authors print for the first run. So I'm glad that it's done really well."
Pre-orders for the book can be made by donating to the kickstarter — which ends on Sept. 29, 8:48 a.m. — at https://www.kickstarter.com/projects/bethandcoop/the-abcs-of-inclusion-by-beth-leipholtz/pledge/new?clicked_reward=false
Leipholtz says she hopes the book is officially released by the end of this year. When it is, Cherry Street books has already signed on to carry the book and it will also be available on Amazon.
The Trust Project
