Lessons from My Six-Year-Old Teacher: Presence, Patience, and Phones

Glasses slipping down her nose, eyes focused on her two students. Her markers are lined up in rainbow order, and papers are stacked neatly on our couch as she prepares for her first class. And I prepare for lessons from my six-year-old teacher.

My Favorite Teacher is Six

Mitch and I bought our granddaughter, Noa, the Pretend Play Teacher Set because, at 6 years old, her dream is to become a teacher. It combines Noa’s love of telling people what to do with her love of doing things for others. For her first lesson, Gus (our Vizsla) and I were her students. Gus’s tail wagged back and forth like a pendulum as he waited for the class to begin.

PHONE

“No, Nana!” My first infraction came quickly, the dreaded peeking at my phone during class. I was caught midscroll when Ms. Noa immediately grabbed my device and put it in the phone box. “No phone Nana!” Hence, no photos of our school day.

A no phone sign displayed on a pole in a public area, indicating that phone use is prohibited.

CRISSCROSS

After the phone incident, we rotated through several classroom stations in our simulated setting, each requiring me to sit “crisscross applesauce.” Does she know how old I am? Yet, I “crisscrossed” sat, stood, and sat again, as directed.

Lessons from Noa

Wednesday —A Hard Spelling Word

Unfortunately, it was Wednesday. She paused, head tilted, clearly sounding it out in her mind, “Whenday”..No, “Wenday”…No… Ms. Noa took off her pretend glasses and said, “Pause game!” Gus was no help, so I spelled the long word, and we resumed our lesson.

Gus, My Classmate

A brown dog wearing glasses sits in a classroom, with a chalkboard in the background displaying a sun drawing and 'ABC'. A book cover titled 'Raising Jess' is partially visible in front of the dog.
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I was impressed by how little my classmate knew. He only seemed to respond to “Get in your seat!” and paid very little attention to the lesson.

Our school day grew tense when Gus had one behavior that sent ME to the principal’s office. Ms. Noa threw some food into the classroom garbage pail. My furry fellow pupil immediately left his seat to eat out of the garbage.  I started laughing at the ridiculousness of it all and was immediately sent to the principal’s office.

Ms. Noa took me downstairs and removed her glasses. Now she played Principal Noa, and I was reprimanded. Oh, she must love this! Meanwhile, Gus didn’t even get a scolding. Unfair!

NOA Nowledge

When I was done with school and started thinking about our day, I realized Noa is always playing the role of teacher. She didn’t need the teacher set, but it added a new level of play. I reminded her that my own undergrad and grad degrees are in teaching, so maybe it runs in the family. Her great-grandmother Rita was a legendary teacher.

Noa is always teaching me about fashion. And if that were a subject, she would send me for remedial help (her opinion, not mine—though I do need to expand my gown wardrobe). Meanwhile, Gus wears the same red suit every day.

Lessons Learned

Playing the role of teacher, feeling the responsibility and yes, pride to be in charge and teach others is the big lesson here.  

Noa is educating me, although it’s not the lesson she intended. She is teaching me to be present. I am learning to remember what it was like to be a young girl and to have patience for ninety minutes sitting cross-legged on the floor as a student of my granddaughter.

Class Dismissed!

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

OMG! Jessica and I are in Exceptional Parent Magazine: A Home of Her Own

I wrote an essay about our daughter, Jessica, and planned to submit it to Exceptional Parent Magazine. Clicking the send button with my essay traveling the digital waves is like setting off an avalanche of ruminations.  Fellow writers will understand the agony of waiting to hear what the editors think: 1. Will they take a hard pass, or 2. Accept, or even worse,3. No reply. I need to face the fact that more often than not, my story will not be accepted.

A Home of Her Own
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But Then…

BUT THEN, many months later, I received the email that we would be featured in the February Issue (page 25) of Exceptional Parent.

A Home of Her Own

Jessica

I have been reading Exceptional Parent since 1982, when our daughter Jessica was born with a rare chromosome deletion. So, I am exceptionally honored and thrilled that they chose my story to share with their readers.

Choosing to move Jessica into a home of her own was one of the hardest decisions we faced as a family.  We knew our daughter deserved a life surrounded by more than just mom and dad.  But it’s complicated. When your child has a disability, one often thinks that the most compassionate route is to live at home with mom and dad.

I understand the need to protect and keep your child at home. We felt especially conflicted because Jessica is nonverbal and cannot express her feelings with words. But there will come a time when a parent can no longer care for their child. Planning for your child’s future is crucial to a smooth transition to adulthood. It is a compassionate decision. Exploring options for your loved one while you are able, rather than in an emergency, is a loving gift.

A Home of Their Own

My hope is that families consider their child’s options with an open mind and heart, fostering independence to the best of their child’s ability, which is the beginning of the next step in their child’s future: a home of their own.

If A Home of Her Own inspires and moves you, there are many more real-life Jessica and family stories in the three-time award-winning book, Raising Jess: A Story of Hope.

To help spread Jessica’s story, consider sharing this article with your network, leaving a review on Amazon, or gifting Raising Jess: A Story of Hope to a friend. Each small action can create a ripple effect of awareness and inspiration.

HAPPY VALENTINE’S DAY!

A Home of Her Own
Happy Valentine’s Day!

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

How FaceTime Keeps Us Close to Our Nonverbal Daughter Jess

Our daughter’s face rises to the iPad display.  Seconds pass before her joyful shouts fill the screen. She is using her unique language to tell me, “I see you, Mom”. Our 43-year-old daughter, Jessica, has severe intellectual disabilities. Though she cannot speak, she fully understands and participates in virtual connections like FaceTime.

Seeing Jess Through A Screen
Jess, I am excited to see you, too!

FaceTime with Jessica is unfiltered singing, laughter, and bliss. Her housemates frequently join in, singing all of Jessica’s favorites. And, I often wonder what the staff in the background think when my full-volume, off-key singing fills the call. For me, our chat is also a mom-to-daughter check-in because Jessica is unable to speak. “Are you okay, Jess?”   (This story reminds me of the first post I wrote about FaceTime with Jess in 2020- So much has changed including how I post a blog!)

(more…) “How FaceTime Keeps Us Close to Our Nonverbal Daughter Jess”

UNIQUE Little Red Book: Our Daughter, with a Severe Intellectual Disability, Story in an International Book 📕

The Unique Little Red Book
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For many years, we did not know Jessica’s correct diagnosis. We didn’t know that the DNA Jess was missing played a significant role in her development. Heck, we weren’t sure if it was DNA! And what does this have to do with a UNIQUE Little Red Book?

A rare genetic diagnosis gave us a name, a global community—and a spot in the not-so-little UNIQUE Red Book.
(more…) “UNIQUE Little Red Book: Our Daughter, with a Severe Intellectual Disability, Story in an International Book 📕”

Recipe for Disaster with a Happy Ending : Sibling Advocacy for Our Daughter With Severe Intellectual Disabilities

I love mashed potatoes, there – I’ve said it—boring, white, fluffy, buttery mushy mashed potatoes, steaming from the pot. My eldest daughter, Jessica, also loves mountains of mashed, earthy potatoes. Jess is unable to chew functionally due to a rare chromosome deletion and developmental disabilities. When her food is not a proper consistency, it can be a Recipe for Disaster. Mashed potatoes are her ideal food.

Recipe: Mashed Potatoes

Ingredients:

  • 4 pounds of russet potatoes
  • 2-3 cloves of garlic, optional
  • 1/3 cup butter melted: salted butter optional
  • 1 cup of milk or cream (confession – I use water or vegetarian vegetable broth)
  • Salt and pepper to taste

Jessica needs assistance with all the ingredients of her daily life. Think of every single thing you do, from waking up to the moment you go to sleep, and that is what Jessica needs help managing.  

Recipe for Disaster
NO ISSUES WITH DRINKING, MOM! WELL, MAYBE SOME SPILLS 😊

Jess is 43 years old, and at age 25, she moved into a group home for individuals with developmental disabilities. Her home is two miles from our house.  The five women-friends-housemates have round-the-clock staff who assist, including preparing food with the correct texture and consistency.  Jess will choke if there are large, chewy, hard, or chunky pieces.  Her food is ground up in a processor.  As parents, my husband and I must have daily faith that her staff members pay attention to the details — all the ingredients. Food that is not prepared correctly can be a recipe for disaster.

(more…) “Recipe for Disaster with a Happy Ending : Sibling Advocacy for Our Daughter With Severe Intellectual Disabilities”

My View: Life’s Battles Continue Regardless of Circumstances: Medical Appointments with our Daughter with Severe Intellectual Disabilities 


“Hello, Jessica! It’s so nice to see you!” says the dental hygienist. Slowly, I roll Jessica into the small bay, where she will duke it out with the hygienist and me for the next hour. You are familiar with the size of the compact dental treatment room, which contains the chair, tools, and shelving.  Add a wheelchair, Jessica’s aide, and me, and it’s seriously snug.  I’m sure dental hygienist schools did not have a rule book for cleaning Jessica’s teeth.  Yet, every 3 months, the hygienist creates a new page to her manual called “dodging the bite, head turns and arm flail while using sharp instruments.”  It’s sure to be a best-seller!

READ ON BUFFALO NEWS IF YOU HAVE A SUBSCRIPTION

Jessica

Born with significant disabilities and a rare diagnosis, Jessica is not considered your typical patient. Fortunately, we are close to a dental office that caters to those who are, for lack of better words, not in any “how to” books.

JESSICA GOES TO THE HOSPITAL UNDER GENERAL ANESTHESIA FOR A FULL DENTAL CLEANING

The Visit

(more…) “My View: Life’s Battles Continue Regardless of Circumstances: Medical Appointments with our Daughter with Severe Intellectual Disabilities ”

Thankful for Superhero Healthcare Folks: Bones, Scopes & Hopes

An essay about bones and scopes? EWWW—Don’t despair; no details are given other than a heartwarming story about our thankfulness to healthcare Superhero providers.

BONES

Accompanying Jess for a bone density test or Dexa Scan is daunting. This test measures if you have some calcium and other minerals in your bones. Are your bones looking strong (high number) or more like Swiss cheese (low number), or perhaps all the numbers in between? Low numbers increase the risks of fracture. 

Have You Had This Test?

Raise your hand if you have had a bone density test.  For those who have not, I will give you a short version.  Lay on your back on a table, don’t move, keep your arms and legs in this position, and watch the scanning X-ray arm pass over your torso.

NOT SURE IF THIS IS A HAND RAISE OR A MIKE TYSON MOVE

Meet our tech, Kelly, at ECMC Medical Center.  She is Jessica’s radiologist technician.  She is also a unique individual with a heart as big as Jessica’s personality.  Jessica’s house manager (also Kelly), myself, and I roll into the exam room.  Tech-Kelly (I will refer to her as TK) helps us transition Jessica to the flat, hard scanning table and instructs us to stay behind the protective wall. 

Sing Loud, Vickie

My job is to sing at the top of my lungs to keep Jess calm and distracted. Not sure how calming my voice is to the others in the room. Thus far, nobody, at all the doctor appointments I attend, has ever had the nerve to ask me to tell me, “STOP! You’re hurting my ears!”

TK settles Jess on the table under the X-ray equipment. We are ready to begin the scanning. “Wait,” I protest. What are you doing? You can’t stay there while the X-ray is shooting rays?”  At first, TK smiles and ignores my worry.

Jess squirms and giggles as our angel tech gently helps her stay still.  

Take 1

The pictures are blurry; we must do this again.  Again, I protest, “Please don’t expose yourself.” 

Take 2

This time​, TK sings loudly with me. I am sure they did not learn singing in X-RAY school; this song is straight from the heart.  Yes, there is a bit of guilt that I am not standing there.  Throughout Jessica’s childhood, I stood by for every x-ray and, at one point, decided that I couldn’t continue doing that.

When the test was complete, I spoke to TK about her kindness and empathy. She said, “I have no children, and my mission is to help special patients like Jessica.”  She was honored to be able to provide this compassionate service.  I am honored and thankful to ​​have met TK-Kelly.

Bone Density Result

Bone Density result – Osteoporosis – We are not surprised; many individuals who are wheelchair users have problems with bone density.  Limited physical activity, immobility, and certain medications can contribute.  We are working on new strategies to get Jess standing, if not moving. One potential option is a standing wheelchair (more on this at another time)

THIS WAS A DEMO – WE ARE GOING TO START WORKING ON GETTING THIS FOR JESS

COLONOSCOPY

Kelly, Jessica’s house manager, is a nurse, and we trust her opinion and guidance in making medical decisions. Jess experienced some rectal bleeding. TMI? Kelly suggested we visit the proctologist, who suggested a colonoscopy to rule out a serious problem.

OK, I will not go into the S@#%^ details because everyone knows about the prep. I will start at the hospital after the prep and before the procedure. You can thank me later.

This time, we were in Buffalo General Hospital.  Once again, the staff are exceptional.

Eminem and Jess

Yes, it was an encore of my loud singing until I used my phone as a backup. Jessica’s favorite musician is Eminem. I started playing his music until the F#%^& word screeched loudly among all the drugged and gassy people in the Colonoscopy prep and post-procedure area. OOOPS! I immediately shut it off until a nurse said, “We enjoyed her music—don’t worry about the lyrics.”

So Eminem cleaned out his closet while Jess cleaned out her colon.

I am thankful that the staff allows Kelly and ​m​e to assist. Years ago, the medical professionals insisted that they knew EVERYTHING and didn’t take the opportunity to use Jessica’s experts. For more details, see Mh.D.

A Hoyer lift was used to assist Jessica in getting onto the bed. 

This is Hoyer Lift used at another location

Choose Me

Kelly and I ​put on her gown and kept Jess calm while waiting for her procedure. Inserting the IV took a few tries but was successful. After the first try was unsuccessful, another nurse jumped in to assist. One little vein raised its hand to say, “Choose Me.”  I watched the nurse slowly insert the needed into Jessica’s skin, the top layer, and then into the willing vein. GOTCHA! 

The doctor removed two polyps, and Jessica is scheduled to return in three years. I was second-guessing whether Jess needed a colonoscopy; the risk and the prep were weighing on me. Kelly initiated this appointment​, and it was the right step to take. Thank you, Kelly, for your wisdom.

Village

As I’ve said many times, it truly takes a village. Some villagers, like Kelly, are there daily to support our Jess. Others, like the X-ray and hospital staff, are just passing through Jessica Town. We witness the best of humanity, the superheroes, and the reasons people choose their professions. Mitch and I are forever thankful for our village.

Thankful to You

I am thankful for all my readers—those who have supported and encouraged me on this post-retirement gig, shared thoughtful comments, sent kind messages, and taken the time to read my stories. You are my village, and I am thankful for each of you. Wishing you a joyful and meaningful Thanksgiving!

Your Turn! Would love to hear your comments

My Award-Winning Vegetarian Chili Recipe

OMG, this weekend’s weather “forecast” A good time to repost my award-winning Vegetarian Chili recipe – Stay Warm and Safe – XOV

Each year, before Covid, in the small resort town of Ellicottville, NY, a Texas Chili Party rounded out the summer festivities. Every participant brought their award-worthy chili creation. You may think Texas Chili includes a lot of meat, and for the most part, it does. But I am a vegetarian and decided to enter the contest with a Vegetarian Chili. 

It was a risk, but what the heck? What is the worst that could happen?

(more…) “My Award-Winning Vegetarian Chili Recipe”

Brady’s Extraordinary Birth Story, as Told by Nana

Noa’s planned delivery date was my birthday, October 1st. The birth of our first granddaughter and third grandchild. Our excitement and fear were growing with each day. My daughter Carly and her husband, Steve, invited me to attend the birth. Noa’s birth was not an ordinary delivery. We knew the potential complications.

(more…) “Brady’s Extraordinary Birth Story, as Told by Nana”

Finally Seeing Our Daughter Jessica After 54 Days Apart

Today was our first-time seeing Jessica after 54 days–I was not sure how this was going to play out. Jess enjoys facetiming with us, but I was concerned that she would not understand why we were unable to touch her even though we were visibly in front of her. My husband, Mitch, insisted that we needed to visually look at Jess and he wanted Jess to know that we are here, not just on her iPad or iPhone.

(more…) “Finally Seeing Our Daughter Jessica After 54 Days Apart”

Home My Tara

Opinion Piece Buffalo News – My View

 

My husband Mitch refers to my childhood home as “Tara,” the glorious homestead featured in the movie Gone with the Wind. My Tara was not antebellum style; it was more suburban Long Island ante-chic. But to me, it was home.

Westbury

We moved to Westbury, Long Island, when I was almost four, and my unborn brother was months away from appearing. My dad’s sister and her family lived next door to us. On the other side of our house was one of three homes belonging to cousins from another family.

My Tara
Cheers to Westbury House – where everybody knew my name

Kids of all ages played kickball, argued, and shared birthdays. We even learned the “Cha-Cha” from neighbor Millie, who had once been a line dancer in NYC. One, two, cha-cha-cha! None of us was very good or coordinated, but Millie kept up the encouragement. Back in the 60s and 70s, all the neighborhood kids felt like cousins, connected by shared experiences.

“The City”

We were close to New York City. Throughout high school, I imagined living in “the city” as an adult, specifically on the Upper East Side. My vision included easy access to Bloomingdale’s and all the new Broadway shows. I did not consider how I would afford any of it at the time.

A large building facade covered with a black and gray patterned wrap featuring the Louis Vuitton logo, with construction scaffolding visible at the top and clear blue sky in the background.
My Tara
One World Trade Center towering over surrounding buildings under a clear blue sky.
Home My Tara
The City

My childhood home became legendary to me because I felt safe and loved by my family, and embraced by our small community. Before you start thinking it was idyllic, it was not. I was rebellious, always fighting the rules and curfews,  and trying to get my way! Yet the secure foundation gave me the confidence to navigate tough times as an adult and kept me grounded.

Where are you from?

I have lived in Buffalo, NY, since 1979, yet when people ask where I am from, I still often say, “I’m originally from Long Island…” Why is that? Perhaps it connects me to a larger picture of my identity and history. There is something about where I was raised that will always be my provenance, the first chapters of my personal story. Mitch reminds me I lived only 18 years in the NYC suburb, and well, you can do the math. Yet, those formative years still coax me to say, “originally from Long Island.”

The move to Buffalo was a tough one – the difference was tremendous. First off, my immediate family was four hundred miles away. Shallow, younger me was disappointed by the lack of shopping. Lonely Vickie could not find a friend. Nevertheless, I moved here to start my life with Mitch and was determined to overcome all the perceived hardships and make Buffalo my new home.

Jessica

It wasn’t quick, smooth, or easy, but it happened! I slowly made friends who would become family. I found my community and felt a sense of belonging. I saw the love and devotion my new village showed my husband and me when our daughter was diagnosed with a rare chromosomal deletion. Our village stepped in when Jess was young and volunteered at my home.  Jessica is now 43, and we still have the tremendous support of friends and family. Westbury will always hold a strong place in my heart. Yet it is no longer where I want to be. My sanctuary is now in a Buffalo suburb. My home is less about brick and mortar and more about my people. My home is my family, friends, and the local community.

A woman with curly hair and a vibrant blue sweater interacts joyfully with a boy wearing a black t-shirt, both sitting on a red couch, sharing smiles and laughter.
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Two women smiling and laughing together, one with short hair and a purple shirt, playfully sticking out her tongue, in a lively indoor setting.
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A smiling older woman with glasses stands beside a young woman in a wheelchair, who is wearing a cozy burgundy jacket. Both appear happy and engaged in a friendly moment.

My New Tara

Now, in 2026, living with my husband and Vizsla (Gus), I feel the same as I did in my childhood home. It is my new Tara, and I promise I will not make a velvet dress from curtains, a la “Gone With The Wind!”

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

How to Help Your Child with Special Needs Engage with the Arts

Thank you, Betty Vaughan, for an engaging and informative article for families.

Key Takeaways

  • Art helps children express themselves, especially those with special needs who may struggle with verbal communication.
  • Digital tools can aid in organizing and sharing children’s artworks, making their creativity more visible to others.
  • Creativity fosters essential skills like fine motor coordination and emotional regulation, but should avoid unnecessary pressure.
  • Adapt art activities to each child’s needs and let them explore without rigid rules to enhance focus and self-worth.
  • Technology can empower children with speech or vision challenges, allowing them to communicate their artistic experiences more effectively.
Engage in Arts
Image via Pexels

It can be hard to know where to start. The paint sets get knocked over, the music is too loud, the instructions feel vague — and suddenly art time becomes stress time. But for parents of children with special needs, the arts aren’t just nice-to-have activities. They’re lifelines. Creative expression offers structure without rigidity, emotion without pressure, and joy without preconditions. If your child struggles with communication, sensory integration, or focus, art might become their clearest and safest language. But the path isn’t always obvious — and that’s okay. What matters is that you’re looking for a way in.

When Words Don’t Work, Let Color Speak

Some kids don’t speak in full sentences, but give them a brush, and they’ll explain everything. Drawing, sculpting, even simple collage can offer a way to express

ss emotions without words — especially when those emotions are tangled in frustration or isolation. A 2024 research review found that children with autism spectrum disorder often use visual expression as a regulated emotional outlet, building confidence and reducing anxiety in settings that might otherwise overwhelm them. When verbal processing becomes too demanding, visual language steps in as a translator.

Keep the Memories, Share the Growth

Capturing your child’s creations is one thing. Organizing them for others — teachers, therapists, IEP teams — is another. If you’ve ever had a pile of art but no way to explain it, digital tools can help. Some parents convert sketches into digital portfolios, pairing the image with short notes or observations. It might be as simple as uploading scans or photos and exporting them into a shareable file — if that sounds useful,check it out. A lightweight solution like this becomes more than a filing system; it’s a way to make your child’s creativity visible, understood, and respected across contexts.

Building Skills One Brushstroke at a Time

But don’t mistake creativity for chaos. Controlled mess matters here. A child doesn’t need a masterpiece — they need the freedom to repeat motions, try again, and see how cause leads to effect. When your child squeezes clay, strings together beads, or layers on paint, they’re doing more than just making — they’re building the hand strength, coordination, and tactile awareness needed for other parts of daily life. These seemingly small steps help build fine motor coordination that can carry over to writing, dressing, and even feeding skills. The key is repetition without pressure. A predictable art space — even just a corner of the table — can act as a calm anchor in their day.

Forget the Rules — Adapt the Art

Start with what’s reachable. A piece of chalk. A gluestick. Finger paints in a tray. Then watch how your child approaches it — and resist the urge to correct. One of the most effective things you can do isadjust projects to each child instead of trying to make them fit a traditional lesson plan. Research in the journal Art Education emphasized how “student-appropriate activities” — meaning, art that meets the learner where they are — increases focus, reduces shutdowns, and boosts self-worth. That means offering options, embracing imperfection, and letting repetition replace novelty.

Therapy Time Can Be Creative Time Too

Therapeutic goals don’t have to clash with creative ones. In fact, art often does best when it lives inside another routine — not outside of it. If your child receives speech therapy or occupational therapy, ask the therapist about ways to embed art into therapy sessions themselves. One publication from the Council for Exceptional Children outlined how adaptive materials — from wide-grip brushes to sensory-friendly modeling dough — can support emotional processing, executive function, and resilience. It’s not about keeping your child occupied; it’s about giving them agency in how they explore and respond to their world.

Make It Musical, Make It Multisensory

Art
Jessica’s Creativity is through Music

Some kids don’t connect with paint or markers — but hand them a drum and the room changes. This describes our daughter Jessica, who refuses to do art, but if you give her an instrument, she is in her element. Multisensory engagement matters, especially for children whose neurological wiring favors rhythm, vibration, or auditory feedback. If your child responds better to movement and sound than to visuals, try instruments made for their hands. There are professionals out there who specialize in just this — therapists whotry inclusive adaptive music tools tailored for nonverbal learners, neurodivergent kids, or those with motor differences. And the science backs it: Music and movement can enhance focus, support regulation, and encourage spontaneous interaction.

Let Technology Amplify Their Voice

And through it all, remember this: the goal is not to raise an artist. It’s to raise a child who feels seen. Who can make a mess, try again, and have that process recognized as valuable. When a child with special needs is offered a canvas — metaphorical or otherwise — they’re being offered control, clarity, and calm. That doesn’t happen through perfection. It happens through practice, patience, and presence. You don’t need training to give that. Just your attention, your consistency, and your willingness to stand back when the art begins to speak for itself.

Discover the heartwarming journey of resilience and hope in Vickie Rubin’s award-winning memoir, Raising Jess: A Story of Hope. Dive into her insightful blogs and resources for a blend of humor, education, and inspiration that will touch

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

A Celebration 95 Years in the Making

About eight months ago, we began planning our dad’s 95th Birthday Party. His 90th was canceled by COVID in 2020, and we were grateful to get another chance. The “we” in this narrative is me, my brother Keith, my sister-in-law Cathy, and my husband, Mitch.

Happy Birthday Dad
We celebrated 90.5 during Covid

Dad was hesitant to plan so far in advance. He tried to say, “Well, what happens if we can’t have the party?” My thick reply was, “Huh?”  Dad, trying to be clearer to his dense daughter — me—said, “You know, what happens if I am not here?”   I finally got it. “Oh, (head slap), we will just cancel the party!” I was trying to keep it light.

Age doesn’t determine whether you know what each day will bring. So, plan away, which is exactly what we did.

The Gathering 🎉

The youngest attendant was our 6-year-old granddaughter, and the oldest was not my dad but his friend Joe, at 102! We gathered in a festively decorated private room at a local restaurant with family and friends.  Dad was the center of attention. Most of his buddies have been together since the 1960s and 70s. They were together on Long Island and moved to the exact same location in Boca Raton. It’s Long Island 2.0

95th celebration
My son Alex (speaking) had a good speech – everyone was very attentive! (Not an easy task these days)

Once seated, we began with a few speeches. I was the MC and called Dad up first, but I am saving his speech to last.

Words from the Heart

Keith – My Bro

Happy Birthday Dad
My Brother Keith and his family – Dad in the middle (sort of)

Keith spoke from the heart, not from a piece of paper or a phone. (Fun Fact— Keith followed my dad, who followed his dad, into the garment center in NYC—three generations )  

My brother spoke about how Dad leads by example.  “Dad is a man of character — disciplined, loving and caring, and smart,” He spoke of Dad’s open mind, his ability to change, and the deep, caring love he showed our Mom every day. 

Cousin Lisa

Happy Birthday Dad
Heartfelt Hugs

My dad and Lisa’s late mom were brother and sister, and our houses sat next to each other in Westbury, LI.  (Fun Fact: Dr. Cousin Lisa is a twin who gave birth to twins, and now her daughter has recently given birth to twins.)

Lisa spoke movingly about Dad’s devotion to his sister, Carol, and how he repeatedly demonstrated how much she was loved and cherished by him.

These are the lessons we learn from our parents, and even though we are grandparents ourselves, those lessons continue to guide us.

Our Son Alex and Family:

happy 95th Birthday Dad
Alex, Dad, Joyce and family

“Grandpa, you’ve been there for everyone your whole life.  I keep coming back to the last few years of Grandma’s life and how you were so present for her day each day. Not out of responsibility, but true love.”  

“Thank you for showing my parents how to spoil the grandkids. I’m seeing the fruit of that labor now.” 😉

“Thank you for helping me learn how to love Broadway, golf and to be a devoted husband.

 

Fun fact: When Alex was in high school, Dad promised him the Camaro convertible as a graduation gift—a hard no from Mitch and me. So Dad told Alex it would be his someday, and Alex ended by hoping Grandpa keeps driving it for many years to come.

Joyce

My grandparents passed when I was in second grade, and gaining Monroe as a grandfather was a gift I never expected.

Our Daughter Carly & Family

happy Birthday Dad
A Heartfelt Hug! Dad and Carly

“My grandpa has always been someone I looked up to. He’s kind, generous, funny,

strong, and always puts his family first.   One of my favorite memories of growing up was after my Bat Mitzvah. I started reading the Haftorah for Yom Kippur services. My grandparents would come to Buffalo every Yom Kippur to hear me chant the prayer, and I would sit next to grandpa in temple and try to pray like him.”

“He would sing this one prayer so loud and with so much enthusiasm that I always tried to

match it. To this day, when I sit in Yom Kippur services and we sing that prayer, I

immediately think of my grandpa sitting with me  , and it still brings such a smile to my face.”

Hubby Mitch –who shares the Same Birthday as Dad

birthday Boys
Happy Birthday, Dad and Hubby Mitch!

“Monroe has lived through world wars, typewriters, and rotary phones, yet still manages to pay for his groceries with his Apple Watch. He is generous, kind, and welcoming as a father-in-law. He probably had a few moments wondering, Is this who Vickie brought home, AND he is from Buffalo!?”

“As a father-in-law, Monroe is welcoming, generous, and quietly influential. Long before the phrase “pay it forward” became popular, Monroe lived by it— Mitch said, “I’ve tried to do the same with our family.”

Mitch ended with wisdom he learned from dad, “True class is generosity, true success is family, and legacy is what we pass on to others.”

Happy Birthday Dad
Dad with Mitch and me

Jess

happy Birthday Dad! With Jess!
If you look closely, you will see that I added a sticker of Jess to the photo.

It’s always sad, as parents, when the entire family gathers out of town, that the ENTIRE family isn’t there. We are unable to travel with our daughter, Jessica. Jess has complex medical needs,  our backs are old, and travel isn’t possible for Jess.

Below is our family photo. I thank my level-one tech skills and a tip from a beloved cousin for creating the image.

Dad‘s Words

Happy Birthday Dad!

“I hope you don’t mind if I read this because my eyesight is slightly better than my memory – 😉 – Dad thanked everyone for coming and honored those we lost, especially Mom. He celebrated his expanding family, including his most recent dividend, the great-grandchildren. Dad thanked lifelong friends who have shared both joys and hardships —together.”  He was deeply touched and honored to share this day with all of us.

He ended with, “Everyone’s invited in five years to my hundredth birthday, and if I am not here, don’t be sad, it’s been a great run.”

We love you, Dad!

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

68 is the New 13- My Adult Bat Mitzvah

The morning of October 12th, I sat at my desk practicing Hebrew for my Bat Mitzvah that evening.   I am not 13—traditional age for becoming a Bat Mitzvah in front of family, friends, and the community —that ship passed 55 years ago.  

Six months back, I saw a notice at our Temple – Congregation Shir Shalom– for an adult B’nai (plural) Mitzvah class.  Yes, I want to do that!  In true Vickie fashion, I put it on my list of things I mean to do but don’t. 

A month later, I received a text from my daughter Carly with an announcement about the Adult B’nai Mitzvah class. She knew it was on my “bucket list.” OK, OK, I’ll sign up.

Bat Mitzvah Day!

Bat Mitzvah
Beautiful Tallit and Yarmulke from all my kids!- this is the Bag

The morning of October 12th, as I sat practicing my portion for the gazillionth time, I listened to the news of the release of the remaining living hostages.  Tonight we would be celebrating their release along with my Bat Mitzvah. And, although I can’t compare the magnitude between the two events, I love that I will be in Temple and sharing my personal memorable day with the humbling news of the hostage release.

It’s Happening!

68 is the new 13

The Temple was filled with family, friends, and community to celebrate the 11 people who were formally and publicly showing their dedication to tradition.

We all came from different starting points- most of the class were not born to the Jewish faith. I was so impressed at their decision, especially at this time when antisemitism is rampant. Yet, they chose to become part of the tribe.

OK back to me — I am shvitzing (Yiddish for sweating bullets!) – how does somebody do this at 13? So much pressure – all those people!

I wish one of those people was my Mom – Here is a photo of her Bat Mitzvah in Israel and I think she is older in that photo than I am now!

A couple smiling while holding a decorated Jewish Torah scroll.

My Turn

Bat Mitzvah
Reciting The Prayer

My first moment at the microphone was to sing and lead the V’Ahavta (Vee-Ah-Hav-Tah) prayer.

For six months, I practiced the pronunciation and the chanting tune. Oddly, I thought that I knew all the words-and, not oddly, I was 100% mistaken – I knew none of the words!  What was I singing all those years at Temple?  Why didn’t anyone stop me?

Hebrew text of the V'Ahavta prayer alongside English translation and instructions.
See why it took 6 months!

Oh!, It’s My Turn Again

Bat Mitzvah
Reciting My Portion from the Torah – Sacred, handwritten parchment scroll of Jewish law and instruction

My next big moment was reading my small portion from the Torah. I taught myself Hebrew this summer and was able to actually read the Hebrew words.  Side note, I had a very small portion, so it was not a huge leap – again, how do those 13-year-old kids do it?  I guess their brain is also 13 and soaks up more letters!

Me, Once More!

My speech summed up some of the reasons why I would consider this – right here, right now.

Quiet, Please — She’s Speaking

A portion of my speech

Many! Years ago, when I was in third grade, I had a strong memory of my parents saying, “Do you want to go to Hebrew school?”  My second solid memory is me saying, “Uh, NO!”

I didn’t regret that decision until I was in my 30s.

Watching all three of my children become bar and bat mitzvah reawakened a desire to formally express my dedication to being Jewish.  Yet, I still put it off.

A newspaper article discussing a mother's reflections on her daughter Jessica's Bat Mitzvah, highlighting Jessica's challenges and achievements, alongside personal anecdotes and community involvement.

When we decided to celebrate our daughter Jessica’s Bat Mitzvah, we were told that a girl automatically becomes a Bat Mitzvah when she turns 12, and a ceremony is not required. (Jessica has significant disabilities and needs total assistance with all daily life skills.)

Yet, the Rabbi also said that Jessica can show her dedication to religion to the best of her ability, and for her, it was through music. 

A young girl sitting in a wheelchair, wearing a tallit, smiling warmly at the camera with plants in the background.

So, Let Me Get This Straight -I am Already a Bat Mitzvah?

Yes, I had a Bat Mitzvah the day I turned 12; it’s an age thing.  BUT I wanted to formally take responsibility to the best of my ability by learning to read from the Torah, correctly pronouncing prayers that I thought I had been pronouncing correctly for years (Oy Vey!) and independently learning how to read Hebrew. 

Everyone on this stage has a unique, compelling story of why they are here, but together we share the dream of celebrating our adult B’nai Mitzvah on the bimah (stage) with our family, friends and community. 

We met six months ago, under the leadership of Rabbi Alex and Cantor Frank. We dedicated ourselves to learning about prayers, rituals, and what this uniquely means to each of us.  Congratulations to all my fellow adult B’nai Mitzvah friends.

October 7 inspired my resolve to become a Bat Mitzvah publicly, and today, October 12th, we celebrate the release of the remaining hostages and the hope for peaceful times. Part of my Torah portion says “And g-d saw the light” – today we see the light.

Thank you to my Dad, who is watching online – (Hi, Dad), for teaching me to love going to Temple and keeping our traditions. To our kids (er adults), Jessica, Alex, and Joyce, Carly and Steve, and grandkids Brady, Griffin, and Noa, who enthusiastically encouraged me.

Finally, thank you to my husband, Mitch, who supported me through every step of this milestone and all my endeavors.

Third grade, Vickie would agree that this day was a long time coming.

Will This Speech Ever End?

PS – On the wall in our home are signed B’nai Mitzvah photos starting with my dad in 1943, and all three of our kids. I want to add my photo to our wall. If you’d like to sign the mat, it will be located in the back of the hall.  (Speech Over)

A framed newspaper article titled 'Congratulations to the' featuring a mother reflecting on her daughter's Bat Mitzvah. The article includes a photo of a smiling girl holding her hands together in prayer, along with celebratory text about the event.
Jessica’s Bat Mitzvah
Framed photo of a young boy wearing a baseball cap, surrounded by handwritten congratulatory messages and well wishes from friends and family.
Alex’s Bar Mitzvah
A framed photograph of a young girl smiling, surrounded by handwritten messages and signatures on the matting.
Carly’s Bat Mitzvah
A framed black and white photograph of a young boy in traditional Jewish attire, wearing a tallit and holding a prayer book. The photo is surrounded by handwritten notes and signatures.
Dad’s Bar Mitzvah
Bat Mitzvah
Dad’s Invitation ( 1943 )to His Bar Mitzvah – I am Officially a Hoarder!
Torah
COULDN’T FIND MITCH’S BAR MITZVAH PHOTO – BUT HERE HE IS CARRYING THE TORAH TO OUR NEW TEMPLE
Framed photo of a woman in traditional Jewish attire, standing in a temple holding a Torah scroll, surrounded by colorful flowers, with congratulatory messages written around it.
Bat Mitzvah
The Wall!

OK, Gotta go write some more thank-you notes! 13-and 68-year-old is Vickie is so grateful…

Raising Jess: A Story of Hope
97 Five-Star Amazon Reviews ⭐⭐⭐⭐⭐

A heartfelt, inspiring true story that readers call honest, beautiful, and unforgettable. GET YOUR COPY OR GIFT FOR SOMEONE SPECIAL TODAY!

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

Graphic displaying '97 Five Star Reviews on Amazon' in bold white text with five yellow stars on a red background.

🦃ThanksGiving ThankFULL

I am Thankfull for all the below and more — This list is in no particular order — which, is actually how I think! 😉

Here We Go…

🦃My Father-in-law survived his medical crisis and is on the road to recovery — and his family surrounded him 24/7. A lot of togetherness, like “a lot,” but every moment felt meaningful and healing for all of us!

A family gathers around a smiling elderly man in a hospital bed, showing support and love.
NOT US!!!!

✈️I got on a plane and survived to write this sentence — and to Mitch, who consistently tells me I overpack!

A chaotic pile of colorful clothing and accessories spilling out of various suitcases, representing the challenge of packing for travel.

🦃Our kids fought over who was going to host us for Thanksgiving — yes, it got complicated, but geez— To Quote Sally Field – “They like us, They like us! “

🍴My daughter asked to borrow my fancy silverware — YAY! There is a chance it will not show up on eBay one of these days!

🦃Jessica had visitors — every day while we were away— and as we Facetimed in a restaurant, she hummed the Star Spangled Banner to the delight (?) of the other people in the restaurant and me. 

Jessica
Loving FaceTime with Jessica

🦃Mike, who watches our dog and refuses any compensation! We keep trying to find the magic gift, but his gift is truly our dog Gus. And,Tova and Mark, who feel the same way about Gus— I wish we had found this much enthusiasm when our kids needed babysitting back in the day. 

💖Mitch and I still feel like a loving team after 45 years- 11 months- 3 weeks- and 4 days of marriage — and we not only love each other, but also like each other— Most of the time!

A couple happily dancing together at their wedding, dressed in formal attire with the bride in a white lace gown and the groom in a tuxedo.

🏈🀄That I play and understand (to a point) fantasy football — and Mahjong

✌️I have the right to change my voting registration to say I don’t want to be affiliated with any party!— and I did it!

📔Grateful for my book and blog readers who are not only friends and family— like people I have never met! Thank you!

🍨Chocolate ice cream, Tofurky and Chardonnay, not necessarily at the same time—”Not that there’s anything wrong with that!“

A glass of red wine alongside a bowl of creamy vanilla ice cream, set against a blurred background.

🏃‍♂️That I am still participating in the Turkey Trot with my kids and grandson—The oldest foot race in the world, and it’s here in Buffalo! I am beginning to become one of the oldest participants – but not yet…

A group selfie at a Turkey Trot event, featuring two adults and a boy, all smiling in athletic gear. The background showcases people participating in the race and a city building.
TURKEY TROT 2024

👨‍👩‍👧‍👦Family and Friends who feel like family, my readers— and YOU!

🦃That I can say Happy Thanksgiving to my Wonderful Dad — He’s reading this so, “Happy Thanksgiving, Dad – I am Thankful for you!”

A smiling couple takes a selfie, sitting close together with a warm backdrop.
OLD PHOTO!

Happy Thanksgiving, y’all and thank you for inspiring me to continue writing even when I feel like putting my pen down (actually, it’s more of fingers and keyboards and complicated internet thingies but you get the picture! —May your turkey or Tofurkey be tender, your family be kind of calm, and your joy loud!

With ThankFULLness, gratitude and appreciation, Vickie

(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)

For inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

vickie's views

Calling All Book Clubs! 

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.

I Am Not Defined by Disability: Seeing our Daughter Through Strength, not Disability

A Mother’s Words for Jessica

Our daughter Jessica is 43 and has severe intellectual disabilities. This is a parent’s perspective of defining our daughter by her abilities and strengths, seeing past the disability.

I am not defined by my rare chromosome deletion —but some dismiss me immediately

crop chemist holding in hands molecule model
Photo by RF._.studio _ on Pexels.com

I am not defined by my wheelchair—although many people can’t see past that

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Jessica 2020

I am not defined by the assistance I need to get through each day — yet, many cannot overlook the daily moment-to-moment care that I need

Driving Miss Jess
Mitch Helping Jess out of her Van

I am not defined because I cannot speak words —You do not know what I understand

A woman and a young adult with disabilities are engaged in a lively conversation at a table, with a piano visible in the background.

I am not defined by pity—because I, my family, and friends do not feel pity for me.

Dear Colin Farrell
Jessica and Housemate-Friend Playing the piano

Please, if you are going to give me a label—Let it define:

  • My love of friends and family, music and food, community and temple, and all the things that make me who I am.
  • My ability to show and share joy
  • My right to experience each and every day, just like you
Happy Birthday Jess

(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)

For inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

vickie's views

Calling All Book Clubs! 

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.

Our Daniel: When Love Means Letting Go (Buffalo News)

An Italian Greyhound wearing a bright orange life jacket stands on the deck of a boat, gazing out at the water.

My View Buffalo News: Sometimes you have to accept that it’s time to say goodbye

A woman with curly hair holding a cup, sitting in a cozy space, wearing a colorful plaid shawl.

Daniel, our Italian Greyhound (IGGY), is 13 years old —and his body and he are trying to tell us something.  Just a few days ago, he showed moments when he had a bounce in his newly awkward gait. But mostly, Daniel is medicated because he is in pain.

Is it his time?

Is it his time? Sometimes we say yes. And then, as if he heard our conversation, he gives another wag and a prance — and we know that neither he nor we are ready.

Doctors

Could be a tumor or disc disease. Perhaps it is an autoimmune inflammatory condition. The questions spiral like a tornado – the answers remain few and silent.

Because of his age, size, and breed, anesthesia could be fatal. Surgical recovery — months of pain and restricted movement — would be intense. And if it is a tumor and not a disc, it’s terminal.

Is compassion not performing heroic measures for an uncertain and painful outcome?

Our other dogs let us know when it was time. Is Daniel telling us now, but are we unable or unwilling to hear his message?

I searched his eyes for an answer; he searched mine for a decision.

We Schedule an MRI

We arrive early for our 8 a.m. appointment with the veterinary neurologist, and I think we are going through with the complicated sedation and testing. As we sit with the veterinary neurology tech, Matt, my husband, Mitch, says, “I have one more question.”

“What is the best scenario?”

Matt hesitates and looks us in the eye. The best scenario, he explains, would be one small disc that needs repair. The surgery is extensive, and the recovery and post-op are intense. The more likely diagnosis is a tumor that may have spread. He reminds us that, due to Daniel’s age and breed, the procedures are very risky, and Daniel may not survive any of it.

Compassion

Matt’s compassion — as a dog owner, a professional, and simply a good guy  — guides his honest words. He leads us to a private room so that Mitch, I, and Daniel can make a decision.

Daniel
IS THAT WHY I DON’T UNDERSTAND YOU?

Daniel has been in pain for weeks. The crate rest and meds have not worked. There are small windows where the meds are just right, so that I can lift him from his stroller for hugs, pets, and a visit to our lawn.

Daniel and Gus
GUS WILL MISS DANIEL, TOO

Mitch says it is ultimately up to me, but he thinks it is the moment to say goodbye. My head knows this is the right decision. My heart is shocked that it’s now.

Together, we decide that this is Daniel’s time. The doctors agree — our painful choice is a compassionate choice.

With my head resting on Daniel’s and Mitch’s and my hands on his body, the doctor inserts the life-ending injection. Daniel slowly quiets until he is completely still. I feel the minute life leaves his body.

Fly over the rainbow bridge, Daniel. Your pain is gone, and our pain is growing. You are at peace, and we are heartbroken, but we are also at peace.

A brown dog wearing a colorful bandana sits closely with a small Italian Greyhound on a leather couch, both looking towards the camera.
Daniel and his Vizsla brother Gus

 

For inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

vickie's views

Calling All Book Clubs! 

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.

How Parents of Children with Disabilities Can Recognize and Manage Emotional Spillover

Guest Blog by Betty Vaughan:

HOW STRESS SHOWS UP IN THE HOME

Parenting a child with disabilities often means managing needs that never pause — medical, behavioral, and emotional. That weight doesn’t just sit on your shoulders; it leaks into the walls of your home. Maybe the meals are rushed, the conversations short, the laughter less frequent. Maybe your partner feels like a co-worker more than a co-parent. When stress becomes the houseguest that never leaves, it’s time to take inventory. What feels like tension between you and your child may actually be the daily strain of caregiving that’s coloring every interaction. Naming the stress won’t fix it, but it’s the only way to begin untangling it.

A joyful moment between a father and his child, with the child playfully reaching for the father's sunglasses while seated in a stroller against a sunny blue sky.

Consider Outside Sources

If your job is contributing to your anxiety — whether due to overwhelming demands, poor management, or emotional burnout — it may be time to consider a long-term career shift. Re-evaluating your path doesn’t mean starting over; it means recalibrating toward work that fits your strengths, values, and lifestyle. For example, if you work in nursing and want better working conditions, shifts, and pay, you can explore flexible masters in nursing programs that support both career growth and family responsibilities. Programs like these can help you gain more autonomy, reduce chronic stress, and build a future that doesn’t require sacrificing your health for your income.

PREPARING FOR PEAK STRESS PERIODS

Some days are heavier than others. Medical appointments. Transitioning back to school. A therapy schedule that feels like a part-time job. These moments don’t just raise the volume — they can hijack your nervous system. That’s why planning matters, so start managing stress during transitions before they hit. Build a playbook before the chaos starts: pack snacks the night before, text your friend who always grounds you, map out parking in advance. Keep one small thing — even if it’s just the pen you bring — consistent each time. These steps aren’t about eliminating stress; they’re about shifting the ground beneath it. When you have a system in place, you don’t spiral — you act. You need that clarity for yourself and for your child.

SELF-CARE THAT’S ACTUALLY POSSIBLE

Forget bubble baths and spa days. For most special-needs parents, those belong in fiction. Real self-care looks like breathing in your car before pick-up, eating an actual meal, or texting someone just to say you’re unraveling. It means noticing when your chest gets tight — and choosing to pause, even for ten seconds. Self-care isn’t a luxury, it’s a circuit breaker. Without it, you snap — maybe not outwardly, but inwardly where it counts. By integrating self-care for special-needs parents into your regular routine, you’re not just helping yourself — you’re modeling coping for your child.

BUILDING SUPPORT AROUND YOU

You shouldn’t have to parent in isolation. There are people — local, online, even unexpectedly in your extended family — who get it. But you have to let them in. That means reaching out to the parent you saw at therapy, joining a support group, or looping your sibling into the daily load. Isolation breeds anxiety, but community breaks it. The strength you need isn’t always inside you; sometimes it’s relational. Your village may not look how you imagined, but it exists. Start building a support network that gets your child — and gets you.

INTEGRATING CALM THROUGH CREATIVE TOOLS

Sometimes the thoughts come too fast. Your mind is juggling what-if scenarios, school paperwork, therapy goals, and forgotten laundry. Writing it down — actually seeing it on a page — can help quiet the chaos. Tools like a PDF maker let you turn mental clutter into something tangible: a list, a journal, a shared plan, a routine your child can see too. It’s not about productivity. It’s about finding structure in disorder, calm in motion. And sometimes that structure becomes a shared bridge — between your anxiety and their security.

You’re allowed to feel it. The fear, the frustration, the fog. But what matters most is what you do once you notice it’s there. Your anxiety doesn’t disqualify you — it invites you to build new tools, to find new support, to care for yourself in the margins.

Discover the heartwarming journey of resilience and hope in Vickie Rubin’s award-winning memoir, Raising Jess: A Story of Hope, and explore her insightful blogs for a blend of humor, wisdom, and inspiration.

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vickie's views

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

 

Calling All Book Clubs! 

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.


Message me here or write to vickierubinauthor@gmail.com to set it up.

Seizures and Bravery

“Mitch, Jessica is not responding to me! Her lips are a blueish tint and… OMG! I think she is having a seizure!”

“Brave doesn’t mean you’re not scared. It means you go on even though you’re scared.“

Angie Thomas, The Hate U Give

Seizures

Everything hits me at once – is this the day the seizure will win? Will Jess be able to get enough oxygen? Will this be the seizure that doesn’t end quickly? And how much I hate F!@#$%^ seizures!

Jessica is unable to communicate with words, even when she is not in the midst of a seizure. Oh, how scared she must feel, and she will never be able to tell us.

Bravery

I want to run ~ Out of the room…Out of the house… And come back when the seizure is over and Jessica is well.

But, of course, I can’t. I wish I could say my fear encouraged bravery. However, my fear encouraged more fear.

Jessica’s dad, Mitch, my husband, is the brave one in this scenario. He is also fearful for Jess and, unfortunately, needs to manage me, as well.

Mitch tells me,”Call 911.” After that, he says, “Go upstairs and get supplies for our trip to the ER.”

An emergency call graphic featuring bold, red text labeled 'EMERGENCY CALL' against a blurred night city background with emergency vehicle lights.

He is taking me out of that room ~ giving me the steps that I need to collect myself and find my bravery.

Once the ambulance arrives, I am brave~ I am brave as we travel to the hospital speeding down the roads. I am brave when we sit in the ER exam room, as Jessica slowly wakes up… as Jess becomes herself once again.

Jessica

The true brave person in our story that happened more than once and more than twenty years ago is our daughter Jessica. No matter what hardships she has~ she overcomes them and starts again.

Bravery isn’t always loud. Sometimes it’s Mitch calmly telling me, “Call 911… go get supplies.” Sometimes it’s me holding it together in the ambulance. And most of all, it’s Jessica—our daughter—who faced the unimaginable every single time.

Mitch

Bravery
1984 and 2022 (Mitch and I haven’t changed a bit! 😉)

Bravo our brave daughter and thank you Mitch for the numerous times you helped me find bravery.

As I write the following words, my superstitious self is yelling at me, “STOP!!!!!,” and I hope that I am not putting a whammy on our luck. Jessica’s seizures “appear” (maybe using that word helps with superstition 😉) to be under control with medication. Perhaps, at age 43, other metabolic changes have occurred. So we hope and pray that Jess remains on this path.

Have you had a moment of bravery in a time of crisis?

(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)

vickie's views

Have you read Raising Jess: A Story of Hope? I’d love to join your book club—for an engaging, heartfelt discussion.

We can discuss the real-life moments behind the pages, including parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book. Message me here or write to vickierubinauthor@gmail.com to set it up.

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

RV 3.0 – Maiden Voyage USS Rubin 🚙

No judgment, please – We’ve bought another RV. This RV 3.0 is a camper trailer, unlike our RV 2.0 EKKO motorhome, which was second to RV 1.0 Truck Camper. The official name is Winnebago Micro Mini – and before you start thinking Mitch and I are sharing 10 square feet of mini space, (lord help us!) we actually have more room than we did with the EKKO. I told Dad that we were going on our maiden voyage and he named our rig the USS Rubin. How did CHATGPT come to the rescue during our first RV Camping trip?

RV

Moving IN

Moving into an RV is like furnishing a home: linens , supplies and deciding where everything will go.  Amazon is  delivering all types of gadgets to our door (love that!).  OK, maybe some of the gadgets aren’t exactly for the RV… It’s fun imagining our new space and all the ways I can become disorganized!

RV
BEFORE
rv
AFTER

Our first trip was to a small campground called Chautauqua Gorge.  It’s a lush, tree-covered site on private land bordering 563 acres of NYS land. It’s close to the Chautauqua Institute, Bemus Point, and other resort areas.  All was going well until we…  

Added Water to the Tanks

Have you ever wondered how running water is supplied or where toilet waste goes? (Here is a funny reminder 😉). When you get to a site, you may be able to hook up to water. This means attaching your hose to the campsite’s spigot, giving your RV endless water for washing dishes, showering, and using the sink. But where does all that water go, you ask?

Well, you see, the campsite provides a drain hole. We connect our hose and drain the grey water tanks (sink, shower water). The black tank is, well, you can guess where that hose goes. Dumping black tank water is not high on my list of preferred activities.

ICK

Garbed in a mask and full gloves. Yes, Mitch rolls his eyes! I take on the role of opening the lid to the drain hole and inserting our hose. I am keenly aware that the person before us may have dumped their black water tank into that opening, and that thought is enough to make me want a full hazmat suit. But that would probably be grounds for divorce. So mask and gloves it is.

Cartoon depicting a person in black attire using a hose to drain an RV at a dump station, with a sign indicating 'DUMP STATION' in the background.
OK, This Has Not Happened YET!

Back to the USS Rubin

After our RV has finished eliminating all its waste, Mitch and I go through our (my) Lysol routine; spray hose, spray gloves, spray the bottom of shoes, spray inside of hoses –

RV
WATCH YOUR SHOES! TOO CLOSE!!!

Finally, we are back in the RV, sanitizing our hands, and I try to forget all the ICK.

ChatGPT-RV

But after we connected the hose for the first time in our new-to-us camper – PUFF! An “EWWW, that smell” filled our site.   “Mitch, what is that rotten egg smell?”  

The kid in the next campsite told his mom that he thought there was a stink bug nearby.  Yes, it was bad. (Of course, I was immediately  ready to abandon ship and go to a hotel)

Surprisingly, thanks to my love of technology and Mitch’s willingness to do the dirty work, we were able tackle the problem.

At one point, I heard Mitch say, “This will be really easy. I watched a video.”  That gave me zero comfort!

ChatGPT Help

A cartoon depicting a woman sitting on a stool with a laptop labeled 'ChatGPT', looking at a camper with its hood open, while a man stands beside her, appearing concerned.

First, I took a photo and asked ChatGPT – She (he, they) suggested propane issues. After we ruled that out, I sent Chat some photos

Chat replied – “Thank you, Vickie – This clarifies – These are the next steps for finding the source.”

  We went back and forth with this dialogue for about an hour until the problem was solved. Mitch, willing to get his hands and clothes really dirty, and me, who is willing to type questions and add photos, make a great team.  I particularly loved it when Chat thanked me for the clarifications.  It was like having a polite repair person at the campsite.

RV 2.0
THIS HELPED! IGNORE THE CAMPING NAILS!
rv 2.0
JESSICA’S OPINION OF BEER!

Who You Calling Old?

Once the smell was gone, we relaxed (as did the kid next to us) and enjoyed our first trip. By the way, I heard the same kid tell his grandparents that there were old people in the campsite next to them.  Oh, you mean us!? Thanks, kid!

During our three-day tour, we hiked, ate at She Sings (Click here to read the owner’s powerful story), built a campfire, watched Hard Knocks with our beloved Bills, and had a great time. 

RV 2.0
HIKING

When we got home, Mitch said, “We get along really well in the camper.” 

I completely agree and will go as far as saying we are more compatible in the camper than in the house 😂

RV 3.0 = Success! Next stop: Watkins Glen. 🏞️

RV2.0
RV 3.0 MAIDEN VOYAGE WAS A SUCCESS
RV 2.0
NEXT TRIP – WATKINS GLEN

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 Calling All Book Clubs! 

Mom and daughter - book cover
Raising Jess A Story of Hope

Have you read Raising Jess: A Story of Hope? I’d love to join your book club for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.


Message me here or write to vickierubinauthor@gmail.com to set it up.

Bat Sh!+ Bedlam

Mitch and I were watching The Gilded Age. As usual, I was half-asleep on the couch when I saw something flying.  

“Is that a bird?” I asked.

Mitch already knew it was NOT a bird and was trying to decide what to do with me and the EEEEK! BAT! My voice sounded stressed as I headed to my “go-to” mode of panic-first, ask questions later.

Mitch told me to hide under the couch blanket while he went full Batman.  He was overly optimistic about his Batman skills. After 2 minutes (felt like years) hiding under the blanket, I panted that I needed to go for cover in our bedroom. Yes, I knew I sucked—my panic and fear overcame me. On the other hand, the last thing Mitch wanted was for me to assist.

Meanwhile, the dogs watched the bat like it was a back-and-forth tennis match- Wimble-BAT-don—until Mitch convinced them to abandon the Bat match and go to the bedroom with me.

BAT

Bat Sh!t Bedlam

From the safety of the bedroom, I heard “BANG!,” “DAMN!,” “SHIT!” (and other words), but still no bat. For almost 90 minutes, Mitch was unable to capture the hiding bat. We put a towel by our bedroom door jam and decided to try again in the morning.

Match 1 – Bat wins


Match 2 – Calling Robin

In the morning, Mitch called our son-in-law Steve (Batman’s Robin) to join the search and capture. I stayed in the bedroom, Googling Bat-everything. Dr. Know-It-All Google was feeding me all kinds of information about bat poop—or guano—and other bat secretions. Google’s cleaning procedures reminded me of the first COVID-19 sanitation efforts from 2020. The one suggestion that got Mitch to listen was to capture and keep the bat alive so we could get it tested for rabies. Do not just chaperone the flying beast out the door. Side bar:  As I relayed this story to friends, I have discovered that shooing bats out the door is indeed the preferred method of disposal among the non-Google persuasion.

Jessica
I called our daughter Jessica’s group home to say I could not bring Jess to speech therapy that morning. I was not exiting my room until the bat was caught. I sent an email to Sarah, her speech therapist:

Good morning, Sarah.
I cannot bring Jessica today for a reason you’ve never heard before.
We have a bat in our house and I am hiding in my bedroom.

Sarah replied that I was correct; it was an excuse she had never heard used before.

Holy Batman!!!!!!!

Finally, I heard whoops and hollers from our loft—SUCCESS! “How?”, you may ask. Well, it goes like this: Mitch swiped behind a wall clock, the bat flew out, latched onto his shirt (cue screaming), and he and Steve trapped it with their nets. One net on top of the other, which created a cage of sorts. They secured it in Steve’s net. The sulking or perhaps sleeping bat was sent to a fishing bait bucket on our porch.

BAT

Match 2 – Mitch and Steve Win!

Batman

YOU SOUND STRESSED, MA’AM

When I called the Department of Health, the woman said, “You sound stressed, ma’am!” No kidding! She told me to stop looking at Google. The county instructed us to bring the bat in for rabies testing. If the bat tested negative, we were good to go. If the bat tested positive, that meant rabies shots for us and another blog. 😉

A close-up view of the inside of a vehicle, focusing on the driver's seat and the armrest, with a fishing bait bucket on the floor.
Erie County Department of Health sign displayed outdoors with the county seal.
A man wearing a blue T-shirt, sunglasses, and gloves holds a bucket labeled 'Dick's Sporting Goods' while standing in a parking lot with trees in the background.

I calmed down a bit until the health department called and said, “The bat you saw last night but didn’t capture is not 100% the same bat that was captured this morning. We are treating this as a two-bat exposure.” Translation – two bats might have entered our house since we lost sight of bat 1 when we went to bed.  She assumed it was the same bat, but there was a chance it could have been another bat. 🙄😲

We haven’t had any bat sightings, so we’re assuming it was only one bat.

A person wearing a headset and a mask, with blue gloves, sits at a desk with a glass of water and points while engaged in a conversation.

Finally received the results from the Department of Health – Our Bat was Rabies Free! WHOO HOOO!

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📚 Calling All Book Clubs! 📚

Have you read Raising Jess: A Story of Hope? I’d love to join your book club—for an engaging, heartfelt discussion.

We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.


📩 Message me here or write to vickierubinauthor@gmail.com to set it up.

Dear Colin Farrell-Group Home Story

Dear Colin?, Mr. Farrell? Fellow Parent, Mr. Great Actor?,

Thank you for your wise words about living arrangements for your beloved son, James, diagnosed with Angelman’s Syndrome.  Our daughter Jessica has a rare chromosome deletion (1q43-q44). Like James, she needs assistance with almost everything. Jess moved into her own home at the age of 25. As you eloquently stated in the Buzzfeed article, our difficult decision of choosing a group home was made out of love and concern for her future.

Dear Colin Farrell
Thanks, Mom and Dad!

Your quote from Buzzfeed Article

“It’s tricky, some parents will say: ‘I want to take care of my child myself.’ And I respect that. But my horror would be… What if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, …is taken too — and then James is on his own. Then he’s a ward of the state and he goes where? We’d have no say in it.”

Group Home Choice

When we decided to move our daughter, Jess, into a certified residence, it was a painful choice. As parents, we felt like we were giving up, no longer willing or able to provide care. Yes, we knew we were establishing Jessica’s long-term care, a plan for when we couldn’t offer direct protection. Our minds believed it was the right choice – our hearts felt a bit broken. But as you stated, what is the alternative? We knew moving Jessica into a home in our community was crucial for her future and ours.

I Literally Started MOVING after I Moved to My Own Home!

Your quote from Buzzfeed Article

What his mother and I want is to find somewhere we like where he can go now, while we’re still alive and healthy, that we can go and visit, and we can take him out sometimes,”… He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life.“

That’s Exactly It!

That’s exactly it! We always dreamed that Jess would live as independently as possible and be connected to her community. And it happened! Her housemates have become her sisters, and she has friendships and a community independent of us. And we are still a central part of Jessica’s world—her family. But like you stated, she also has a connected life.

Group Home
I Always Connect with Dad!

Thank you for sharing your reasons for choosing a group home for your son, James. Although we will never meet and lead widely different lives, we do share the unique experience of raising a child with disabilities.

I have always been a fan of your work, and now I am even a bigger fan of your parenting and sharing your story to help others. 

Thank you,

With gratitude and respect,

Vickie Rubin – Jessica’s Mom 💖

PS – In case you are interested, I wrote a memoir about raising our daughter, Raising Jess: A Story of Hope 😉

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Two Years for a Teeth Cleaning: A Dental Story with a Happy Ending

Hope in the Operating Room
Jessica and Dr. Abeles Before OR

After two years of waiting and relentless phone calls, I was on the brink of losing Jessica’s hard-fought dental combo appointment in the operating room (OR).

Why was Jess going to the OR? How come we needed to wait two years? Why was this done at a Children’s Hospital when Jess was 43? Why, did they almost cancel our appointment two days before the procedure? What’s a combo appointment?  And how did Jessica’s phenomenal Doctor save the Day? OK, OK, I will start explaining.

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WHY?

Every Single Thing

Our daughter Jessica has a rare chromosome disorder and needs help with every single thing, including brushing her teeth.  She fights the nightly brushing routine, and staff in her group home cannot force the issue. That would violate Jessica’s right NOT to brush her teeth.  

A woman and a young adult with a joyful expression, both smiling widely for a selfie, with a cozy indoor setting in the background.
Hey Mom, I think My Teeth Look Just Fine!
(more…) “Two Years for a Teeth Cleaning: A Dental Story with a Happy Ending”

A Surreal Moment as an Author– My 3 Minutes of Fame

(This Author Had A TYPO (Thanks for nothing, the Autocorrect! 😂) and needed to fix the title – sorry if you receive it twice!

This is a first – Never Have I Ever had somebody come up to me and ask this question.

Surreal Moment as an Author
(more…) “A Surreal Moment as an Author– My 3 Minutes of Fame”

Buffalo News My View: Meals on Wheels – More Than Food

Meals on Wheels
HOW LONG DO I HAVE TO SIT AND STAY FOR THIS PHOTO?

If You Do Not Have a Subscription to the Buffalo News, the Story is Copied Below:

The Meals on Wheels volunteer knocks on the door; there’s no answer. He strikes again, but still no answer. He calls the elderly gentleman who typically answers his cell phone, but the phone keeps ringing. He’s about to leave when he realizes there isn’t a container outside the door for the Meals on Wheels delivery. There’s always a cooler when the recipient isn’t home. Something doesn’t feel right. He decides to try the door handle.

The door opens, and he hears a moan.  Lying on the floor is his client, *Joe (who is more like a friend at this point), who has fallen and is unable to get up. Joe’s phone was out of his reach. Joe does not have a medical alert device and has no way to alert somebody that he is in trouble.

https://buffalonews.com/opinion/article_acd789f4-faa2-4468-b734-a62e950e926b.html

He quickly bends down to talk to Joe.  His instinct is to help him up, but he knows that is a dangerous move and can potentially cause more harm to Joe. He dials 911 and sits with Joe until the ambulance arrives. He discusses the possibility that Joe might need more assistance than his current situation allows. You see, this is the second time that he helped Joe in a crisis. 

(more…) “Buffalo News My View: Meals on Wheels – More Than Food”

Creative Ways to Support Kids with Disabilities

Thank you, guest blogger, Betty Vaughn!

You already know that the world isn’t always built with your child in mind. Sidewalks without ramps, classrooms without aides, activities that assume a one-size-fits-all body or brain—these aren’t just inconveniences. They’re daily reminders that traditional paths to learning often leave children with physical or developmental disabilities trailing behind, or worse, left out entirely. But if you’ve been parenting for even a minute, you’ve probably learned to adapt in ways most people never have to consider. The same goes for learning: when you embrace creativity, flexibility, and a healthy disregard for convention, you open doors the standard system never bothered to unlock.

Adapt Movement for Access and Meaning

Learning through movement isn’t out of reach—it just requires a little translation. If your child uses a wheelchair, maybe spelling words involves tossing bean bags onto letters instead of hopping to them. If mobility is limited, fine motor games like finger painting with adapted brushes or switch-operated toys can build both physical coordination and cognitive connections. Movement, in this context, doesn’t mean running laps. It means engaging the body in whatever way your child can to reinforce what the brain is discovering.

Sensory Play as a Gateway to Understanding

(more…) “Creative Ways to Support Kids with Disabilities”

Diapers, Dishes & Delusions of Control – Happy Mother’s Day!

FORMER YOUNGER SELF – HIGH SCHOOL GRAD


If my former younger self had known,
That adult Vickie would have three kids and a home,

I would have laughed and said, “Not me!”
I was still learning that money doesn’t grow on trees.

But oh, how my life has changed.
I have developed talents that span quite a range—

From changing diapers while balancing a child on my elbow,
To learning the name of every sports person in Buffalo.

And in between, I cook and clean,
Fix the plumbing, install a screen.

I do some painting, talk on the phone,
And bathe the kids as I write this poem.

All the talents I never knew existed—
Before children, I just may have resisted.

Diapers, Dishes, and Delusions of Control
I think it will be many years until my parole

This poem was written in 1990, back in the day
Now I am NANA and hiding my grey

I still have a lot of playtime with my three youngins’
They are now grandchildren, another generation begins

Diapers, Dishes, and Delusions of Control ,
It went so fast, I sometimes (not always) miss that original frenzied role.

This is year five celebrating Mother’s Day without my Mom,

I thank her for all she taught me about giving love and not remaining calm!


I love our family more than this poem can rhymingly (is that a word) say,
And to all my fellow Moms, Aunts, and Nanas,

Happy Mother’s Day.

Happy Mother's Day
Mother's Day

Your Turn! Would love to hear your comments

Tradition and Women- By My Dad

Dad, as a guest blogger, is becoming a Tradition. Without further ado, here is Tradition, written by My Dad- Monroe Schlanger.

Fiddler on the Roof

Many years ago, during the Fiddler on the Roof rehearsal, the team felt something was missing from the show. They believed it needed a setup. What is the show about? What are we trying to say? They decided it was the Tradition of the Jewish families in Russia.

TRADITION

Tradition 🎼🎵🎶

That night, they wrote the new opening number, Tradition.

Traditional Women’s Roles

(more…) “Tradition and Women- By My Dad”

Happy Birthday, Jessica

Chapter 1 – April 11, 1982 : Raising Jess: A Story of Hope

(Original Blog on new Motherhood Post May, 2022)

On April 11, 1982, Easter Sunday, I was twenty-four years old and had chickenpox. And I was about to deliver my first child. ( Raising Jess: Did Motherhood really all start with Chickenpox?)

For a week, I  complained to my doctor about a rash. For a week, he replied, “The baby is settling. Do not worry,” or, “Just put some lotion on. It must be dry skin.” I was naive, pregnant, unaware, and truly wanted to believe it was nothing. And then my water broke.

We arrived at the local hospital and I told a few doctors about my rash. Each physician dismissed my concern. Finally, an astute nurse (probably an experienced mother) said that my rash looked like chickenpox. My mind went into overdrive, racing with anxious thoughts. How could this be? I was in labor, and I was twenty-four years old. Didn’t I already have all the childhood diseases?

(more…) “Happy Birthday, Jessica”