Editor’s note: Occasionally, we invite young adults to write first-person account essays of their childhood experiences. We hope their reflections shed light on certain circumstances so that parents gain insight as they care for their own families.
When I was born, I cried a lot. It took nineteen years to find out that I had FOXG1 syndrome, a rare genetic disease that causes incessant crying in young children. It also causes difficulty eating, seizures, involuntary movements, and sleep disturbances—all things I have, too. Many FOXG1 patients, including yours truly, cannot speak. Luckily, my dad invented a communication system for me, Tell Us Abey. I use it to email friends, write articles like this, and participate in spirited debates at Columbia University, where I go to college. While I have an incredible life now, in my first years, my parents struggled to maintain normalcy for their daughter, who was nine when I was born, and themselves. It was difficult, but they were determined.
Leaving the house
When I was about six months old, they decided to take us out to dinner. When we arrived at a local spot, the dining room was full, so the hostess offered a table in the barroom. My parents figured that since the barroom was near the door, we could go quickly if I started crying. Sure enough, I started screaming as the entrees arrived, so my mom picked me up and walked toward the exit. A man at the bar got up and stood in her path. “I’ll take the baby. You enjoy dinner,” he said, and he wasn’t taking no for an answer. He held me in his arms and walked up and down the length of the bar while my parents and sister ate. For the first time, my parents felt they were welcome and had support in our community. That moment was important for everyone in the bar that night—the patrons saw that it was okay to bring a child like me out to a restaurant and it was okay to lend a hand.
As I got older, my symptoms became more severe. While a crying baby is fairly common, vomiting, vocalizing, flailing, and pediatric wheelchairs are not. When we went out, people stared and sometimes asked uncomfortable questions. “Is he contagious?” “How did he get hurt?” “Have you tried…?” It was tempting to stay home where we had a wheelchair-accessible environment, all of my supplies and equipment, and no queries from strangers. But my front yard doesn’t have a beach, a mountain or famous gardens. And my living room doesn’t have a Tyrannosaurus rex model, an elephant god statue, or a fighter jet. To experience the world, we needed to leave our house, and so we did.
“To experience the world, we needed to leave our house, and so we did.”
Leaving the house requires being prepared. For as long as I can remember, my wheelchair’s backpack has functioned as a “go bag,” carrying everything I might need on a day out. My bag has feeding tube supplies, like an extra carton of formula, gauze, and tape. It has diapers and wipes, emergency meds in case of a breakthrough seizure, and a tire pump for my wheelchair. Your child’s go-bag may be different, but having one makes walking, or rolling, out the door easier. Nowadays, we sometimes leave the house for more than just an afternoon. When traveling, my dad keeps a Google doc, which covers supplies and equipment, as well as a reminder to stop the newspaper delivery.
How to find winners
I live in New York City, where there are endless options. Our community includes restaurants, supermarkets, movie theaters, museums, parks and gardens. One of our strategies is to find what we call “winners.” For example, when looking for a restaurant, our starting point is whether they have big accessible bathrooms. If so, they are eligible for our trial. If they have a bar that shows the Mets for my dad and a menu with vegetables for my mom, even better. But what is really important is that they are welcoming to someone who eats differently. If the staff makes us feel at home, they become a winner, and we become regulars.
“If the staff makes us feel at home, they become a winner, and we become regulars.”
Sometimes, when we are in a restaurant and someone tube-feeds me, people stare, presumably because they have never seen it before. The feeding pump is more discreet, but I use the gravity method because it is simple and fast. I have never felt embarrassed by being fed, so I go with the easiest option for us. The bag is held a bit higher than my head so that the formula can flow down, using gravity, into my stomach. I have poles that my father fabricated to fit with my wheelchair, or someone stands up and holds it between courses.
This process is completely normal in my family, and after the appetizer, it is completely normal for the family at the next table, too. The next time they see a different nutrition route, they won’t be surprised. While it is not our responsibility to teach the world about my way of consuming calories, my mom never misses an opportunity to do it. She answers every question, reassuring parents of inquisitive children that it is okay to ask. She smiles and says hello to people who stare. She expects being different to be accepted. This has made it easy for me to accept myself, and it’s likely why I have never felt embarrassed.
Growing up, we often visited the Metropolitan Museum of Art, where the guards were friendly, the elevators always worked, and there was a big family bathroom. We planned our visits to include our favorites—the Greek and Roman mezzanine for my younger brother, French Impressionists for Mom, and Tiffany glass for me. This didn’t guarantee a perfect trip, but it stacked the deck in our favor. You see, we’d also always plan to see a new exhibit, but if it was crowded or had displays and I couldn’t see from my wheelchair, the trip was not a failure because we’d seen our favorites.
Once, another patron complained about my loud vocalizations. These sounds may reflect my excitement, but they are involuntary. My mom told them that children like me will be supporting the museum long after they were gone. She did not let anyone exclude us.
I’m an outdoors person, so we take trips to botanical gardens and city parks. They aren’t perfectly accessible since grassy hills are not wheelchair-friendly. Outdoor environments are ideal because you can bring a child who needs low sensory stimulation. When I was little, that was me. For example, there were outdoor performances that I could enjoy and still step away from if I became overwhelmed. We stayed as long as we enjoyed it and left without regrets. Plus, the smells of flowers and pine needles were soothing for me.
Becoming part of the community
Getting out of the house has made me part of my community. When I started college, I was not living at home during the week, and concerned neighbors stopped my mom to ask where I was. They then became delighted to hear about my success. Many times, my mom didn’t know them. But they knew me, and they knew my family, because they watched me grow up. They had seen me at the grocery store, the pharmacy, and the ice cream truck. I was part of their world.
Though exploring the world, or even just your neighborhood, can be challenging, we have found that help comes from unexpected places. Like the man in the restaurant, people surprise us sometimes. I remember going to our local ramen shop, where the owner created a way to hang my feeding bag on the spot, allowing my mom to eat her soup. I remember a man getting out of his car to carry me, in my wheelchair, up the stairs of a friend’s synagogue to attend a Hanukkah party and wishing us a Merry Christmas after. There have been many more who held the door, told my mom that my vocalizing “is absolutely fine,” and anonymously paid for my family’s meal just “because.”
“Help comes from unexpected places… accept the kindness of your community.”
It can be concerning, worrisome, nerve-wracking, and even scary to go someplace new. When possible, we do some reconnaissance to look for winners. We call ahead to ask about accessibility, and our family and friends are always on the lookout for ramps, elevators, and grade-level toilets. We make restaurant reservations so the table is set for my wheelchair, and I always buy movie tickets in advance and arrive early to get the best accessible spot.
Planning doesn’t make things perfect, but it often makes things easier. The imperfect outing is still a success if you imagine leaving the house is your primary goal. Sometimes, it’s important to reframe your goals so that you are not discouraged when the accessible stall is filled with highchairs or the accessible parking spots have been pre-sold to VIPs. It’s completely reasonable to be angry, just don’t let it stop you from trying again somewhere else next time.
Be open to surprises and accept the kindness of your community when it arrives unexpectedly. Remember, this is your child’s world, too.
