Plan ahead when traveling with your loved one with Rett
When my husband’s family decided to plan a Thanksgiving family reunion in Florida this year, we were utterly torn about what to do. Jilly, our 18-year-old daughter and the oldest of our three children, has Rett syndrome. She is non-ambulatory, doesn’t bear any weight on her own, can’t sit up on her own, and she hadn’t flown on an airplane in more than 15 years. Her two younger brothers were beyond thrilled about the thought of spending a week with all their cousins on the beach, so we considered our options: don’t go, go without Jilly, or to take Jilly with us. Ultimately, we decided to go for it and take Jilly with us. I learned a lot, and I’m pleased to share my tips based on some of our experiences.
I will start by saying, it was HARD, but it was worth it. The whole family is grateful for the time together, despite the challenges. I’ll also admit without hesitation that I had a lot of anxiety over all of our preparations, especially how Jilly would do on the travel days. I worried about getting her the proper identification and getting through security. I worried about changing her at the airport. I worried about how she’d get on and sit comfortably on the plane, about how she’d do in the air. I worried an awful lot. I’m happy to report that everything worked out, and here is how that happened.
I started planning long before our departure date. In the weeks before departure, every time I thought of something Jilly might need during our travels I added it to a running list. I wrote down everything she uses for daily routines with regard to feeding, changing, bathing, etc. Had I waited until a few days before, I am certain I would have forgotten things. By the time we left, I had a comprehensive list and felt confident we’d be well prepared for a week away.
We got Jilly identification well before we left. We had been told Jilly would need identification now that she is 18 years old, so about a month before our trip we went to the DMV to get her an identification card. The process was simple, and her ID arrived in about 10 days. We were not ever asked for her ID while traveling, however I would not count on that happening again. Be sure to inquire about what kind of identification your child will need to pass through security at the airports you’ll be using.
We shipped items we didn’t need during travel to our destination. Looking over my list, I worried about how we’d get everything to our destination — there was no way to fit it all in our luggage. I decided to pack only what Jilly needed for travel days and ship the rest so it was there when we arrived. I boxed up items such as briefs, chuck pads, formula, feeding supplies, blankets, and suction machine and sent the box so it arrived before we left home. The box cost around $65 to ship, and it was well worth every penny!
Jilly’s doctor wrote a detailed note so we could carry several containers of liquid on the plane. In the US travelers are restricted to liquid containers no larger than 3.4 ounces in their carry-on. That wasn’t going to cut it for us. To circumvent this restriction I had Jilly’s pediatrician write an order with the name of her formula, details of how she is fed, and information on all of her medications. Having an order on hand made me feel well armed, however we got through security without ever being asked to show it — I think the folks there understood our situation and let us go through. That said, I have heard from other parents that they needed it, so I recommend getting documentation from your child’s doctor in order to board a plane with liquid formula and medications.
On our travel days I had help. It is crucial to have at least one person with you to help, if at all possible. My husband and sons were incredibly helpful throughout our journey.
At security we used TSA Cares. It wasn’t until after we made it through security for our departure that we learned about a program called TSA Cares (https://www.tsa.gov/travel/passenger-support), which provides travelers with disabilities, medical conditions, and other special circumstances additional assistance during the security screening process. We utilized the program on our return trip, and we were treated like VIP’s — going through security was definitely expedited. You can also call the airport within 72 hours of your trip to inquire about screening policies, procedures, and what to expect at security.
I planned ahead for changing at the airport. Jilly does not bear any weight, so she needs to lie down for changing. I have heard of very few airports that are equipped with changing facilities appropriate for adults who require them, and unfortunately at the airports for this trip we had access only to a regular public bathroom, a family bathroom, or a mother’s nursing room, none of which had more than a typical baby’s changing table. Thinking this might be the case, I packed a tarp, which my husband and I utilized in the family bathroom on our way out and the mother’s nursing room on the way home. When we laid the tarp on the floor we explained to Jilly what we were doing. It didn’t feel dignified whatsoever, but I was thankful I had thought of the tarp. We were able to wash it at our destination and use it on our return trip.
We used Jilly’s wheelchair until the last minute. For both flights we were able to push Jilly’s wheelchair right up to the first row of the plane, which was where we requested our seating. My husband transferred Jilly from her chair to the seat and then made sure her chair was given to the appropriate person. Her chair had been tagged with a bright pink tag stating it was an “Assistive Device,” and the tag included our contact information and chair information (that it can not be disassembled, it is not motorized, etc.). The chair was brought to us after both flights and let me tell you, it was a major relief both times.
We considered the best seating situation and learned from our experience. When thinking about seating options ahead of time, we thought it would be easiest if we had the first row, closest to the entrance. However, when we boarded we learned that the front row seats had fixed arm rests. We had envisioned being able to sit closely next to Jilly to hold her upright, but that was not possible. If being able to move the armrest is important to you for positioning reasons, confirm with your airline which seats have adjustable armrests.
We were granted early seating, which gave us an extra 30 minutes to get seated prior to departure. Upon arrival we were the last people off the plane because we had to wait for Jilly’s chair to be delivered to the door. Boarding early and exiting last added almost an hour to our travel time, so definitely be prepared for extra time on the airplane with the whole family.
We made the flight as comfortable as possible for Jilly. As for keeping Jilly entertained and comfortable on the plane, we were sure to have her iPad and iPod fully charged. We massaged her legs and feet periodically. We propped her up with blankets, and we kept her feet from dangling by placing them on a folded up blanket. There were times that she was not happy sitting in the seat, so we managed to get her on our laps for a bit of cuddling. Be sure to pack as many comforts from home as possible!
We planned ahead for transportation at our destination. We reserved an accessible van through Mobility Works (https://wheelersvanrentals.com/), and we really hit the jackpot! We arranged for the van to be waiting for us upon arrival, and the woman who met us gave us the rundown on the vehicle, and then we were off! Jilly literally let out a sigh of relief and began to giggle once we left the airport.
We brought secondary seating for the beach. Jilly traveled and sat in her wheelchair most of the time, however we also decided to bring her jogger for the beach. It collapsed down fairly well, and we put it in an inexpensive travel bag to check with our luggage. It probably isn’t in any shape to use again, but since it was cheap it was worth the one-time use! https://www.amazon.com/J-L-Childress-Standard-Double-Strollers/dp/B003554H9M/ref=sr_1_3?keywords=jogger+travel+bag&qid=1638925923&rdc=1&sr=8-3. Consider your travel destination when thinking about what your child will need for seating.
Traveling with Jilly was stressful and hard at times. However, the overall experience far outweighed the struggle. Having Jilly together with all 22 members of our whole family on vacation was very special. We felt like we accomplished something pretty amazing. If you have some help and plan well ahead of time, I say go for holiday travel!
