Local author releases latest book
By Jason Gabak
Editor
When Merlyn Fuller gave birth to her daughter Shawna Rose almost 29 years ago, she was asked some questions a new mother likely never expects to hear.
Shawna Rose was born with Down syndrome.
“We didn’t know she has Down syndrome,” Fuller said. “They actually asked me if I was going to give her up for adoption. That was not even a consideration for us. I was shocked they would even ask us that.”
Giving up her daughter was a thought that never entered Fuller’s mind and now she has put the past 29 years of experiences, some joyous, some difficult, some rewarding and some challenging into her new book, “A Rose By Any Other Name: Shawna Rose & Her Family Story of Down Syndrome.”
The Jordan based author and musician, has previously published two other books, but her latest work is perhaps her most personal.
“I really enjoyed writing this book,” Fuller said. “I wanted to take all of our life experiences and put them in a book so other people could see what we have been through and hopefully form reading our story it will help make some helpful changes.”
When Shawna Rose was born, Fuller said there was far less awareness and even fewer opportunities for educational and social interaction for special needs children.
In the past 29 years, Fuller and her family have seen opportunities improve.
The family was able to take advantage of early intervention programs and educational opportunities that Fuller said proved incredibly beneficial for Shawna Rose.
From her education to Special Olympics to the Cayuga Seneca Arc’s Fingerlakes Artists, Musicians and Entertainers, or F.A.M.E, program, Shawna Rose leads a very active life.
“She is very busy,” Fuller said. “There are definitely better opportunities than there were 30 years ago. The Jordan-Elbridge school district was great to work with. They were very supportive. We have had a lot of support and great opportunities.”
Living in a home in Skaneateles, Shawna Rose also works part time and leads a largely independent life.
This may be one of the motivations behind Fuller writing this book.
She wanted to shine a light on Shawna Rose the person, not the person with Down syndrome, but the person who leads a busy life.
“She is an adult, she has her own ID, she can go out and have a beer if she wants,” Fuller said. “She is a person and she is independent and she can do the same things we can do and go out like we go out and enjoy ourselves. I want people to see that she and others with Down syndrome are just like the rest of us and do the same things as the rest of us. I wanted to take away some of that stigma.”
To better illustrate this point, Fuller included numerous photos of her daughter and their family in the book.
She also got Shawna Rose involved in the writing process.
Fuller posed questions to her daughter and also opened the process up to a larger community.
Fuller said she asked her friends on social media to offer any questions they might have.
An entire section of the book is dedicated to this question and answer with Shawna Rose and Fuller said the questions run the gamut from the lighthearted to the serious.
“There were a lot of great questions,” Fuller said. “Everything from what her super power would be to sex. She is an adult and there were some very poignant questions that I thought it was important to share her answers to.”
The book also shares insights into services and opportunities available, opportunities Fuller said have grown and improved since Shawna Rose was born.
As these strides have been made, Fuller said she hopes this has helped remove some of the stigma associated with Down syndrome.
Fuller said even in the way people phrase things there has been growth.
As opposed to saying Shawna Rose has Down syndrome; Fuller said there is an important distinction to her being a person who has Down syndrome.
“She and others who have Down syndrome are people who happen to have Down syndrome,” Fuller said. “They are people first, people who happen to have Down syndrome, but they are people first. I hope people are becoming more accepting and kids are more included in school and people are just becoming more aware and understanding.”
But as much progress as has been made since Shawna Rose was born, Fuller said there is concern about the current administration’s proposed budget and cuts to programs and services for those with special needs.
“They are proposing a lot of cuts, cuts that would affect a lot of these programs and opportunities,” Fuller said. “We are very concerned about what is going to happen.”
Fuller said she hopes her book can help open some eyes and progress can continue to be made.
“I hope people will read this and see our lives and they can learn something from it,” Fuller said. “I think we can all learn to be more accepting and inclusive and really treat everyone as individuals.”
To learn more visit merrymischief.net.
