Vickie Rubin: An Introduction
Author of “Raising Jess: A Story of Hope”
Hello there! I’m Vickie Rubin. If you were to delve into my roles, you’d find me as an author, an educator, a relentless advocate, a keynote speaker, and above all, a mother whose heart knows no bounds.
Throughout my life, I’ve been on a journey. It’s one that’s taken me through the nuanced challenges and boundless joys of raising a child with multiple disabilities. What I’ve discovered is that there’s a richness, a depth, a profound beauty in every challenge—especially when you meet it with an open heart, an unwavering spirit, and hope.
My book, Raising Jess: A Story of Hope, is not just a narration but a piece of my heart captured in words.
About My Book:
Raising Jess: A Story of Hope
Raising Jess: A Story of Hope is a heartwarming, inspirational, and personal narrative of our family’s unique story. It chronicles the highs and lows of our family’s journey, spurred by my daughter Jess’s diagnosis with the rare 1q43-44 chromosome deletion syndrome. Amidst the hurdles, the memoir is overflowing with laughter, joy, and unwavering hope.
Though born from my personal experience, this book extends its reach. It resonates with parents, educators, therapists, siblings, and grandparents, serving as a beacon of understanding and an affirmation of the strength of the human spirit in the face of adversity.
About 1q43-44 Microdeletion Syndrome
1q43-44 microdeletion syndrome is a rare genetic disorder in which a portion of the long arm (q) of the number one chromosome is lost. For healthy development to occur, all 46 chromosomes should contain the correct amount of genetic material. Loss of the genetic material in individuals with 1q43-44 leads to developmental delays including motor and speech difficulties, as well as intellectual disability. Affected individuals also have distinctive physical features, variable structural brain anomalies, seizures, and behavioral differences.
Most often, this syndrome arises due to a spontaneous chromosomal deletion, but occasionally it can be passed down in families. Molecular cytogenetic tests are the diagnostic test of choice, providing a detailed look at the missing genes within the deleted region.
Managing patients who have a 1q43-44 deletion isn’t a one-size-fits-all approach. It involves tailored therapies, medical management of seizures, specialized education, and community services & support. Given its rarity (fewer than 1000 cases reported in the USA), consulting with genetic experts and medical professionals is crucial for up-to-date information and support.
»Parent Resources for Chromosome Disorders and Rare Diseases
Vickie’s Views: Dive into My Blog
Life with Jessica, my remarkable adult daughter with a rare chromosome deletion, has been an enlightening journey. Each bend in our path has revealed moments of joy, enduring memories, and strengthened our familial bonds. “Vickie’s Views” offers a blend of heartfelt wisdom and warmth, combining both my personal anecdotes and professional insights on disability.
From the highs and lows of parenting to the joys of grandparenting and stories from our travels, you’ll discover narratives that resonate. Think of it as sharing meaningful stories over coffee with a friend. Explore “Vickie’s Views” for tales that touch your heart, and stay for the inspiration, humor, and virtual camaraderie.
About Vickie Rubin, M.S. Ed.
Vickie brings a fresh perspective by blending her background as a special education professional with her firsthand experience as a parent to an adult with a rare chromosome deletion who needs assistance with all daily life skills. Her insightful essays have been featured in Newsweek, Buffalo News Opinion, and various notable blogs. Additionally, if you’re a podcast enthusiast, you’ve likely heard Vickie discuss topics ranging from the challenges and rewards of raising a child with disabilities to instilling hope, understanding family dynamics, education, and advocacy.
Before writing her book, Vickie led the team at the Early Childhood Direction Center (ECDC) at Oishei Children’s Hospital, a role supported by a New York State grant. She has shared her expertise at local educational venues and has also taught in the Exceptional Education Department at Buffalo State College. To cap it off, she earned her master’s degree from SUNY Buffalo State College, receiving the prestigious President’s Medal for Outstanding Graduate Student. With her blend of experience and passion, Vickie’s journey epitomizes the best of both worlds.
Vickie Rubin, M.S. Ed., and her family were honored with the Children’s Guild Community Recognition Award for their exceptional contributions to the special needs community in Western New York. The Children’s Guild Foundation is committed to enhancing the lives of children with special needs through grants and advocacy in healthcare, research, education, and therapeutic recreation.
In 2006, Vickie received the title of Family-Caregiver-Advocate of the Year at Developmental Disability Awareness Day. This award recognizes a parent, guardian, family member, or advocate who has significantly enhanced the lives of individuals with developmental disabilities.
Get In Touch
Reaching out to readers like you is always rewarding. If you have questions or believe a conversation with me could be beneficial, feel free to send an email. We can collaborate and learn from one another.
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