“Beep! Beep! Beep!” That’s the sound I heard as the wheelchair van started to back up. There was a lot of laughter in the middle of the vehicle. My daughter, Jess, was waiting for an adventure before I set off, driving the van for the group home where she lives. It was my first time driving and I felt like a novice driver behind the wheel of my parents’ car.
Jessica was born in 1982 with a rare chromosomal deletion. She requires full assistance with all skills of daily living, from getting up to going to bed. Jessica has a caregiver who meets all of her needs.
When Jessica was born, we did not know she had a diagnosis. She was our first little baby. She was born close to her due date but weighed less than 5 pounds when we brought her home from the hospital. We called her “Peanut” at the time. We later found out that Jessica was behind on all of her developmental milestones. She is self-care, wheelchair bound, non-verbal and severely intellectually disabled. Our daughter Jessica is also the biggest star in any room.
Vicki Rubin with her daughter Jessica and her husband. Jessica was born in 1982 with a rare chromosomal deletion and requires assistance with daily activities. Vicki Rubin with her daughter Jessica and her husband. Jessica was born in 1982 with a rare chromosomal deletion and requires assistance with daily activities. Vicki Rubin
Raising Jess came naturally to my husband and I. We accepted her for who she was and had two more children after she was born. There were many challenges as Jess grew up, from a seizure disorder to exploring educational opportunities to making sure her siblings experienced typical childhood activities.
Now, at 40, she lives as independently as possible in a group home two miles from ours. To me, Jess is the quiet laugh in the silence and the tender embrace when I need it most. Her beautiful smile, vibrant passion, loving hugs, and sense of humor are just a few of her many endearing qualities.
Before having Jessica, I didn’t understand the challenges families face when a child needs extra support. Heading out on a family adventure was like packing for an overnight stay. It was the same stuff new parents bring when they head out into the community with their baby, except it doesn’t end when the child turns two or three. Our bags included bibs, clothes, pureed food, juice boxes, plastic bags, briefs, and other gear.
Sometimes I think we made it look too easy. We may have given the illusion that we had it all together, when in reality it was a total mess no matter what we did. Our motto was “We do it all, it just takes time.” And we tried to live by that most of the time.
Getting used to driving with Jess
When I was in college, my parents gave me a Datsun 280Z sports car, which I kept until my son Alex was born in 1987 and I needed a backseat. Before that, Jess and I would drive around town in my hot rod, with her as co-pilot for my baby. This was before you had to fit a car seat in the back of the car.
I think my husband and I were naive about the need for a modified vehicle. We felt like once we started down the path of needing a modified van, there was no turning back. We felt like making that decision would be the same as declaring that Jessica would need a wheelchair forever. Maybe we just weren’t ready to accept that fact.
Vicki has fostered a unique group two miles from her home with five families in her community for five years. Vicki has fostered a unique group two miles from her home with five families in her community for five years. Vicki Rubin
We had some freedom before we bought a wheelchair-accessible minivan. It was easier for us, but not as taxing, given how long it took to get Jess into a standard car rather than using a power wheelchair ramp and various attachments. Families learn to accept accommodations at their own pace. Intellectually, they may understand they need extra support, but emotionally, it’s often difficult to admit that caring for a child is becoming harder.
Luckily, we had therapists and experts in the field who knew it was time to take the plunge and buy a wheelchair van. They saw the bigger picture and warned us that if we didn’t do something to make lifting easier, it would have a negative impact on our backs in the future.
Buying my first wheelchair van
The decision to switch to a wheelchair-accessible vehicle was huge. For me, it meant envisioning our future without assuming that one day our situation would change. We knew we needed help, and that help came in the form of a heavily modified 3-ton truck.
I once told my husband, Mitch, that I didn’t want to drive a station wagon or any other suburban vehicle, but as fate would have it, we ended up owning not only a few minivans, but eventually a wheelchair accessible minivan.
The company removed the middle seat and added supports, harnesses, a wheelchair ramp in the side door, and other modifications that are beyond the scope of my automotive expertise. We were incredibly excited and grateful to receive our new car. I imagined it would be easier to get Jess around town, fun to get there early and probably not be late to everything.
But the deftness of strapping Jessica into her new van required skill, expertise, patience and a good sense of humor. Our transportation learning curve was perhaps most highlighted during an outing with my friend Cheryl, who invited me, Jess and her youngest daughter, Carly, to go to the local ice cream stand to celebrate our newly converted van.
Cheryl got in the passenger seat while I got Jess all into the harness, clamps and hooks. The hours were ticking and I was sweating trying to secure Jess into the van. Meanwhile, Cheryl was joking that if she’d known it would take so long, she would have brought an overnight bag. “Maybe you should call your boss tomorrow morning and tell her you’re going to be late for work,” she continued.
Cheryl’s monologue made my fumbling even worse. I was laughing too hard to do anything right. Thirty minutes passed before Jessica’s wheelchair was secured in the van. We finally got ice cream, and every drive got easier.
In September 2022, Vicki was able to drive Jessica’s group home van for the first time. In September 2022, Vicki was able to drive Jessica’s group home van for the first time. Vicki Rubin
The moral of this story is that we could laugh, and that was much better than self-pity. We overcame a lot, endured a lot, feared some things, and got through it all. Most experiences that start out as insurmountable challenges become doable over time. Unfortunately, it’s often just another lesson learned later.
Having Jess changed my life. She changed Mitch’s life and paved the way for her siblings. Jessica’s diagnosis transformed me from a somewhat “overly spoiled” young woman who prioritized cool clothes and designer handbags to a woman known locally as an advocate for families with children with special needs. And I still love a good handbag.
This didn’t happen overnight. Families raising children with special needs need hope from those around them. Healthcare professionals, teachers, clinicians, friends, and other family members have powerful tools to support families of children with special needs: help them choose hope; without hope there is only despair.
Jess moved into a group home at age 25. Many families say they never consider putting their children in a group home. But unless your family plans to stay forever, you need to have a plan for emergencies. Jess was able to return home safely and live as independently as possible, with support and guidance from my husband and me.
Learn to drive Jess’ group home van
And now I’m driving Jess again, except this time she lives independently.
So how does a mom drive a group home approved van? Well, it took quite a while.
First, I became a volunteer for the welfare agency that owned the van. The application process involved a lot of paperwork, fingerprinting, online classes, and exams. I took a road test to ensure I was a competent driver. I relearned how to put on straps, harnesses, and other safety equipment.
The application process was a lot of work, but it was worth all the prerequisite work. The result was more freedom and opportunities to go outside. I understand the need for regulations. I appreciate that the rules were flexible enough to allow me, a parent volunteer, to pick up and drop off Jessica.
In September 2022, we were able to take Jess on her first trip out of her group home. Mitch and I took Jess to dinner and I was the official driver.
I was nervous about hitting the main road, but we made the three mile round trip to dinner. Our maiden voyage was a success. Jess and I have made several trips since that first one.
Jess is non-verbal, but there is so much she wants to communicate without words. The first time I put her in the group home van and started the engine, she screamed with joy. One time, we brought my Vizsla to an activity, and Jess had a good laugh when she found out the dog was in the van too. Becoming a volunteer and passing all the paperwork and exams has been worth all the time it takes.
Before I was licensed to drive the group home vehicle, I would communicate with the home staff and shuttle Jessica to and from activities. This schedule was limited by staff availability. Learning the skills to transport Jessica has opened up a new world of freedom for our family.
Being able to load Jessica into the van and hit the road has opened up a world for both of us, and although we still struggle with the complicated straps, we’re both happy with the independence and freedom we’ve gained.
Vicki Rubin is an author and mother. Her memoir, Raising Jess: A Story of Hope, is out now. You can buy her book here.
All views expressed in this article are the author’s own.
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Newsweek is committed to challenging conventional wisdom, seeking common ground and finding connections.