Have Portable Feeding Pump, Will Travel

Or: Wherever you go, there you – and your special needs child – are.

Traveling these days can test the equanimity of even the most experienced meditator. Add in a special needs child with sensory issues, mobility limitations, a bunch of medical equipment, and the potential for seizures or other emergencies, and you have the formula for nervous-breakdown levels of stress. Sarah and I travel often and in this post I share some of the lessons I have learned about how to make traveling as stress-free as possible.

#1 Arrive Early & Stay Calm

The number one, most important piece of advice I have is to give yourself more time than you think you need when traveling with a special needs passenger. You never want to arrive with minutes to spare only to discover that the check-in line is a mile long or that you are the lucky random traveler selected for the full security pat-down. Remind yourself that much of what happens during travel – especially when flying – is out of your control. Getting angry about delayed flights, lost luggage, or damaged mobility equipment is pointless (Sarah’s adaptive stroller has been damaged on several occasions). I usually make sure to meditate for at least 15 to 30 minutes on the morning of a travel day, although it’s not always possible if we have a super early departure. I also wear a mala bracelet or something similar to remind me to practice patience and mindfulness while en route. Sarah and I arrive early, smile at everyone, and find something to eat while we watch airplanes take off.

#2 Packing

Medically complex children tend to need a lot of extra stuff. I use a list or “to-do” app so I don’t have to try to remember every thing I need each time I travel. I just check off items as they’re packed and can then uncheck them before the next trip. I have separate lists for myself and Sarah, and even a specific list for packing for a meditation retreat.

I use a mini backpack as our “go-bag” and stock it with things we will need immediate access to, like a day’s supply of medication, rescue meds, syringes, g-tube extensions, and a small bottle of water. This goes under the seat in front of us and is easy to carry around or hang on the side of Sarah’s adaptive stroller. I also have a backpack for general stuff like my wallet, Sarah’s iPad, snacks, and jackets. For short trips, I try to avoid checking any luggage which saves the hassle of waiting in line at the ticketing counter. When Sarah was on the ketogenic diet, we also brought a soft-sided cooler on board. I discuss traveling with liquids later in the post. Fortunately, those days are over.

#3 General Tips

I strongly recommend having everyone traveling with you, including your child, apply for TSA pre-check status before booking flights. This will save tons of time getting through security. Once you purchase your tickets, call the airline’s disability services number to let them know what your needs are. They will make sure you have seats assigned together and will arrange for an aisle chair or for assistance lifting a heavier child from their seat to their wheelchair. Let them know if you have an adaptive stroller, wheelchair, or electric scooter that will need to be checked at the gate.

Never select the bulkhead seats unless traveling with a service dog because you will have to stow all your bags in the overhead compartment during take off and landing; you want a row of seats in front of you to put stuff under for immediate access. Medical equipment doesn’t count toward your 2 carry-on bag limit, so bring your suction machine, ventilator, feeding pump, and any other supplies you don’t want lost or damaged on board with you. If you will need more supplies than you can carry, your DME company may be able to ship some to your destination.

#4 Liquids

You are allowed to bring more than the usual 3 oz limit of liquids through security if they are medically necessary. Put all liquids including formula and medication in the same bag or cooler so the TSA agents only have to search one bag. Semi-solid foods like yogurt count as liquid. The agent will have to open and test all bottles for volatile fumes by waving a strip over the opening; they don’t remove any of the liquid or put anything into the bottle. Only bring things that you can’t easily purchase in the airport kiosk or at your destination. It’s not worth the time or stress to argue with the TSA agent. After we’re through security, I just buy bottled water or use the water refill station to fill up my own bottle. The TSA website has more information about traveling with liquids and medication. If your child is on the ketogenic diet for epilepsy, weigh any food you will need to use during the flight ahead of time. I learned the hard way that the food scale does not work while in the air.

#5 TSA Cares

TSA Cares is a program to help disabled passengers get through the security screening process as efficiently as possible. The agents are given special training for helping disabled adults and children, including children with autism. Call TSA at least 72 hours in advance (855-787-2227) to give them your flight information and discuss your needs. Each airport varies in the availability of staff and how they meet you. Our local airport has a separate number to call when we arrive and sends an agent out to meet us. Some airports call or email the day of travel, while others just have you ask for a personal support specialist when you get to security (the airline check-in agent can help you contact one from the ticketing desk to save a little time). The TSA Cares agent will escort you through the entire process. I keep Sarah in her chair even though she can walk because the chaotic, noisy crowds are over-stimulating and she does better when she has a consistent routine.

The agent tests the chair and Sarah’s hands for volatile fumes by swiping them with a device. They will also pat down the chair, and sometimes pat down Sarah as well; the gender of the agent will always be the same as the passenger (male agents do not pat down female passengers, or vice versa as far as I know). It has occasionally happened that the chair comes up hot: I assume we rolled through oil or gasoline outside the airport or something. When this happens, the security agent will then have to do a complete pat down of both me and Sarah, and open and search all of our bags. Remember my first piece of advice? Always give yourself more time than you think you need because you never know how it’s going to go.

#6 Service Dogs

Notify the airline ahead of time that you will be traveling with a service animal. Each airline has different rules, but they must allow the dog to fly in the cabin with you and can not charge you an extra fee. Ask for bulkhead seating where there is more room on the floor for the dog (you will sacrifice storage space under the seat in front of you). Bring a mat for the dog to lie on because the floor can be cold. It is best to hold breakfast the morning of travel if possible, but do give your dog some water. Many airports now have places for service dogs to relieve themselves so you don’t have to go out and then try to get back in through security. However, they’re usually gross and most dogs will only go there if desperate. Our dog once chose to hold it for over 12 hours rather than use the doggy facility, despite being given several opportunities. Bring plenty of “poop bags” and be prepared for the occasional accident. Last, be generous with training treats and praise. Traveling is just as stressful for the dog as it is for you.

Don’t pass your pet off as a fake service dog! It’s unethical and illegal and it hurts those of us traveling with real service dogs. Review the ADA law and know the difference between a public-working service dog and an emotional support animal (not legally allowed public access). Don’t be scammed by places that offer to sell you a “service dog certificate”. There is no official certifying organization. A legitimate organization like 4 Paws for Ability will issue a certification once the dog has completed training and passed a public access test.

#7 Practicing Mindfulness

A common saying in the mindfulness world is that negative experiences are like velcro, while positive ones are like teflon: We tend to remember the one mishap and gloss over all the ways things went right. When traveling, make a point to notice and savor the many moments of joy, and work to let go of the stressful ones. Remembering the Parami, practice kindness, patience, and generosity whenever possible. Also, let go of (renounce) ideas that everything will go exactly as planned – it won’t. Connect with other people whenever possible. We tend to have the same shuttle driver whenever Sarah and I travel to Seattle for her neurology appointment and it’s a joy to reconnect every few months. Don’t be afraid to ask for help; you might be surprised at how generous strangers can be. Sarah and I once navigated the San Francisco BART system during morning rush hour. When we needed to get off the packed train, I made an announcement shortly before our stop and the crowd readily moved out of our way so we could get off and someone even helped pull our suitcases so I could handle the adaptive stroller.

Last, slow down and take time to rest. Sarah’s endurance is pretty low, so I tend to let her set the pace. We might have pizza delivered to the hotel room rather than try to go out and I try to limit the number of extra activities we have planned. Recognize your own and your child’s limitations and don’t overdo it.

May the merit of my practice and experience be of benefit to all.

Metta

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