An Oxford father has turned his love for his special needs daughter and his experiences caring for her into a series of self-published books designed to open minds, help others and hopefully, provide her with a little more financial security for the future.
It’s called The Leah Books and in them, author Sam Sottile tells the story of his 23-year-old daughter Leah, who has severe autism. She’s non-verbal and requires 24-hour care.
“I talk about the need to see things through her eyes,” he said. “I talk about all of the different elements it took to care for her and learn to care for her.”
The first two books – “Love Poems for Leah” and “Leah is a Masterpiece” – are collections of Sottile’s poetry.
“There’s a poem about her in each of the two books, but most of the poems are things that I wrote over the years,” he said.
The third book, “Messages for Anthony, Daniel, and Leah,” consists of quotations that Sottile shared with his children on a nightly basis as a way of imparting wisdom and life lessons to them.
“I basically wrote about all the things that I learned in life,” Sottile said. “It was all those things that I learned that made me appreciate (Leah), love her, learn to understand her language and learn to understand what she needs.”
Raising Leah has taught Sottile a number of things.
“It’s taught me a level of patience that you can’t imagine,” he said. “It’s (given) me a greater level of appreciation for everything. It’s taught me to better see through the eyes of other people.”
Most importantly, it’s taught Sottile “to not label folks,” but instead “look deeper” at what makes each person unique in effort to find the most effective ways to communicate and connect with them.
Sottile said there’s a tendency to look at people with disabilities as “broken.”
He sees things quite differently.
“I have this idea that everybody’s a masterpiece,” he said “They’re a work of art.”
He loves the fact that even though Leah is an adult, in some ways, she still behaves “like a toddler.” She enjoys running from one end of the house to the other, dancing around the living room and being sung to, he explained.
“She’s really a joy,” Sottile said. “She will let you hold her hand when you walk – sometimes it’s just pinkie to-pinkie.
She smiles a lot. She’s pretty clever and sneaky. We have to lock the refrigerator and pantry. If we don’t, she’ll get in and make an epic mess.”
When it comes to helping people with special needs learn, grow and overcome issues, Sottile said people need to realize there are no simple or easy answers, no one-size-fits-all solutions.
“Every person is a collection of characteristics,” he said. “If you want to really understand them, love them, motivate them (and) appreciate them, you have to take the time to learn their characteristics and learn how they respond based on who they are. If you do that, then you can begin to find the right treatment for them.”
With Leah, Sottile found “you can’t push her too hard” and “you can’t force her” to do things.
“You have to let her (take the) lead (when it comes to) what she wants to learn and do,” he said.
This earns her trust and confidence, which in turn, makes her more willing to try new things, visit new places and engage in new activities.
For example, Sottile explained Leah used to be afraid to go into stores, so he gradually started introducing her to them.
“Now, she loves to wander around stores and wander around the mall. She’ll shop with me,” he said.
Sottile will soon start work on the next two volumes in The Leah Books series.
One is a cookbook that will contain recipes he created for Leah along with research-based nutrition information and advice, plus ideas on how to help special needs people eat a balanced diet.
The other book will deal with how Sottile learned to care for his daughter, communicate with her and help her overcome issues such as the severe tantrums she used to have.
Sottile stressed that although the books on nutrition and care will cite some research studies, they will largely be compilations of his personal experiences with Leah.
All of the proceeds from the sale of The Leah Books will be used to help care for Leah after Sottile passes away.
“I’ve actually set up a trust fund for her,” he said.
The Leah Books series is available at Amazon.com in both paperback and e-book.