Profound or Depressing 😉
(My 7-year-old granddaughter’s bright idea about aging, energy, and Nana’s dim headlamp leads to a profound revelation.) The Walk My granddaughter and I were walking around my block…
Vickie Rubin
- Wife
- Mother
- Nanna
- Author
- Advocate
- Speaker
Welcome, I am Vickie.
I have a Master’s in Exceptional Education, but more importantly, I have a self-proclaimed MhD. My training for a Doctorate in Motherhood (Mh.D.) began in 1982 when I delivered our first child, Jessica, born with a rare chromosome deletion.
But there’s more to my story!
I’m a three-time award-winning author of the inspiring memoir Raising Jess: A Story of Hope, keynote speaker, and a passionate advocate for families of children with disabilities. As a mom, former special educator, and lifelong advocate, I write and speak about family, disability, caregiving, resilience, finding joy & hope—and especially laughter—in everyday life.
I’d love to hear from you! Feel free to contact me here.
Vickie
Vickie's Views
Short, funny, heartwarming
From the highs and lows of parenting to the joys of grandparenting and stories from the road. Think of it as sharing meaningful stories over coffee with a friend.
‘Twas the Last Night in Boca: Shuffle Off to Buffalo
‘Twas the last night in my dad’s house in Boca Raton, Florida. Dad decided to move to the other “B” city also known to his friends as, BRRRR…
GO BILLS! Perspective from a New Local Fan and Visit to Stadium
From "Meh" to Go Bills! How Josh Allen, game-day madness, and a stadium tour confirmed me as a true Bills fan. GO BILLS!!!
My Passport Photo Got a ChatGPT Makeover
I had to update my passport. It had been 10 years since I renewed, and I only used it once! But first, the dreaded passport photo. I went…
Which Ear is Bugging You?
Which ear is bugging you?” Usually, that’s just an expression. Mitch felt—and HEARD—a bug fly straight into his ear. 😳What followed involved a must-read story. You really can’t…
Wait – Are We Still Connected?
WAIT! ARE WE STILL CONNECTED? Some emails were lost (UGH!). Please subscribe—or resubscribe—so you don’t miss Vickie’s Views, my twice-a-month blog. I value my readers and hope you’ll…
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.
More about Vickie
Her writing has appeared in
Newsweek
The Buffalo News
Exceptional Parent
Our daughter, Jessica
Many years ago, my husband Mitch and I received news that would change the course of our lives. Our daughter, Jessica, was born with a rare chromosome deletion, and very little was known about what her future might hold. Like so many parents facing the unexpected, we learned as we went—celebrating victories, navigating challenges, and discovering joy in places we never imagined.
Those experiences became the foundation for my award-winning memoir, Raising Jess: A Story of Hope. But Jessica’s story is only part of mine.
On this website, you’ll find inspirational stories about family, caregiving, disability, friendship, aging, and the everyday moments that connect us all. You’ll also find RV travel adventures from the road, reflections on life, a bit of humor, and occasional observations that begin with, “You can’t make this stuff up.”
Whether you’re a parent, grandparent, sibling, caregiver, educator, RV traveler, or simply someone who enjoys a good story, I’m glad you’re here. I hope you’ll find something that makes you smile, think, laugh, or feel a little less alone.
Grab a cup of coffee or your favorite beverage and stay awhile.
Rare disease
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.
- <1,000cases reported in the USA
- Chr. 1qlong arm deletion
- Variesno one-size-fits-all care
Speaking
What Vickie speaks about
Keynotes, panels, conference sessions, staff training and book club visits — in person around Western New York, or by video call anywhere.
- Raising a child with a rare diagnosisWhat the first years are like when nobody can tell you what your child’s future holds — and how a family finds its footing anyway.
- Being your child’s advocateWorking with schools and agencies from both sides of the table: as a special education professional and as a parent.
- The transition to adult servicesWhat happens when school ends — housing, day programs, guardianship, and planning for a life beyond your own.
- Caregiving without losing yourselfMarriage, siblings, and the rest of a family’s life alongside the caregiving that never really stops.
- Finding the humor in itWhy laughing at the hard parts is not the same as making light of them, and how humor keeps a family going.
- Writing your family’s storyTurning a life into a memoir — what to include, what to leave out, and how to write about people you love.
Award-winning memoir
Raising Jess: A Story of Hope
When doctors couldn’t tell us what our daughter’s future would look like, my husband and I did what most parents do — we worried, hoped, asked a million questions, and somehow kept moving forward.
At its heart, this memoir isn’t just about disability. It’s about family, hope, perseverance, and discovering that sometimes the life you didn’t plan becomes the one that teaches you the most.
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