By Jessica Schultz
Some stories need to be told! There are so many families that deeply love their children but sometimes just have so many issues relating to them, especially if their children happen to be those with special needs. It can be a struggle just for daily tasks and typical things. Author Vickie Rubin has experienced this situation herself firsthand with her daughter Jessica and through trial and error, she found a system that works for their whole family together. Now, Vickie is coming to Ellicottville, NY to share her story with our community. The Villager had an amazing opportunity to speak with author Vickie Rubin about her life, what led her to this point and what she wants to share with everyone.
The Villager (V): Your book, Raising Jess, is a memoir of your own life; what prompted you to write it down?
Vickie Rubin (VR): “On the book’s first page, you will see the dedication to Jessica and my mom. To Jessica, who changed my life. And To Mom, who gave me life and always said, “You should write a book. I wish you were here to see it come true. My Mom nagged (motivated) me by saying, “You should write a book.” I always enjoyed writing and often wrote published pieces for the My View column in the Buffalo News. I kept telling Mom, “I have three 3 kids, a full-time job – who has time to write a book!!” But then I retired. My son Alex and daughter-in-law Joyce bought me a – thesaurus, dictionary, and writing journal and said – do it. Still overwhelmed by the task – “How do you start? I had boxes of Jessica’s notes and journals–Do I start on day one, I did this, and on day two, I did that? – Is it a textbook?” I was overwhelmed. Then my daughter Carly gave me a book called The Diving Bell and The Butterfly (Jean-Dominique Bauby, editor of Elle, was forty-three when he suffered a devastating stroke. Bauby wrote The Diving Bell and The Butterfly solely by blinking his left eye in response to the reading of an alphabet, arranged according to the frequency with which each letter occurs in the alphabet). Bauby’s book was so inspiring, and it was written in essays – a bell ringed as I then knew I could write this book – essay writing is my style. It did not need to be a textbook – it could have humor and honesty. I started writing each day – woke up at 6am and worked on one chapter at a time for over 4 years. I wrote this book to give hope to others. To give a peek into the life of our unique family. To share our story with humor and humility. And to “hopefully” inspire strength and courage, bring readers a smile, a tear, and a sense of hope.”
V: What have been your greatest challenges not just as a mom but as an author as well?
VR: “The challenges of raising a child with severe special needs who needs total assistance with daily life skills are numerous. The greatest challenges: Education- I needed to continually advocate for Jessica to receive an education in the least restrictive environment. When Jess was young, her school was not in the neighborhood. Through advocacy and partnership with our district, Jess returned to our neighborhood school and received the support needed to thrive alongside her peers. Adult life: It is still a challenge to find a day program that is stimulating and enriching. After an outstanding school district education, the opportunities diminish once a person is 21 years of age. Siblings- We made sure Jessica’s siblings received as typical a childhood as possible and that they had our undivided attention. Jessica needs a lot of physical care, which is time-consuming. My husband Mitch and I were determined to divide and conquer! We made it work. COVID – we could not see Jessica face-to-face for so many days out of an abundance of caution. Fortunately, she understood and loved Facetiming with us! As an author, one challenge was writing an authentic book that was positive yet, honest. I wanted to share hopeful and optimistic stories without glossing over the hardships our family and marriage experienced. My family is very tolerant of the time it took to draft this book, get it published and promote the finished product. I frequently say I had a failed retirement! I still work each day on my blog and marketing my book nationwide.
V: Do you see yourself writing more real-world stories, or do you think you may broaden to other genres?
VR: “Interestingly, I have a challenging time writing fiction; my genre is real-world stories. My blog at www.vickierubin.com shares stories, with humor, of everyday life, family, marriage, navigating the world of COVID, RV travel, and raising a child with a disability.”
V: You are going to be visiting us in Ellicottville in July; could you share the details on that event?
VR: “My husband and I have a home near Ellicottville, and we spend almost every weekend here. We love this village, the skiing, the beautiful hiking trails, the town, and the community. I am honored that Ellicottville Memorial Library is hosting me on July 20, 5:30-7:30pm, for a book signing. There will be a short presentation and reading from 6-6:30pm. I will also be available to answer questions about the book, the writing process, what I know about publishing a book, and advocacy questions for individuals and families of individuals with special needs.”
V: Would you be able to share how Jess herself is doing and if she has any feelings on sharing her story with the world?
VR: “In a COVID world, Jess still has not gone back to her day program. She refuses to wear a mask. We can now visit Jess at her home with masks and Jess is now able to attend family functions at our home. She receives music therapy in her home using her piano, speech via ZOOM with assistance from staff. Recently she was able to receive Occupational Therapy and Physical Therapy in person. Things are slowly getting back to normal. Throughout the last 2 ½ years Jess has remained cheerful, enthusiastic, and playful. She loves the women who live in her home – they are her extended family. Jess is unable to communicate her feelings about sharing our story. I have told her about the book and read many chapters. She joined me for the first book-signing and was thrilled!!!! If her reactions to seeing the book in print and attending the book signing are her way of telling me it is OK, then she definitely approves!”
V: Anything else you would like to add?
VR: “When I think about what we want for all our children – the answer usually is to be happy and to bring joy to others – Jess has exceeded that goal her momma set for her! Without a spoken word, Jess has made friends and is an integral and participating part of her community – she is loved by family members and also nonfamily members – Raising Jess is available on Amazon, Barnes & Noble and other online outlets. Check out my blog – Vickie’s Views – www.vickierubin.com”
Thank you, Vickie, for taking the time to speak with us and for sharing a look at your long emotional journey. A special thank you, to Jess herself for striving and succeeding to find a place for herself in the world. Remember, July 20th, Ellicottville Memorial Library, come down from 5:30-7:30pm, meet Vickie and hear her inspirational tale firsthand.