Traveling With Children Who Have Special Needs: Perception Influences Reality

Traveling with children of any age can be difficult at times. Traveling with someone who has special needs can add additional challenges and frustrations to the regular stresses of travel. Combine the two, and traveling with a child who has special needs can seem like an impossible task to even think of undertaking. But, it isn't impossible. It is simply a new challenge where the rewards are worth well more than the effort. However, as we have learned through firsthand experience, it is not always easy.

I hope by sharing our experiences traveling with a child with special needs here at TPG we can help encourage, support and guide others through these complex situations so they can also get out there and see the world.

About Our Traveling Family

Let me start by introducing myself. I'm Stephen and I have been married to my wife, Angel, for 19 years. We have two kids, Westin, who is 7 years old (yes, he is named after the hotel chain -- we travel a lot), and Haydon, who is 4.5 years old (she insisted I put in the half). Westin has had medical issues since birth. At the age of 5 months, he was diagnosed with an ultra-rare genetic syndrome called Costello syndrome that impacts about 1,000 people in the world, that we know of. A few weeks after being diagnosed, he took his first flight heading to the biennial International Costello Syndrome Family Conference in Chicago to meet with researchers and other families from all over the world. That was our first eye-opening experience into traveling with a child who has special needs. Since then, we have logged more than 30 family trips all over North America.

Before we had kids, my wife and I took 10 to 15 trips a year, both gaining top-tier American Airlines Executive Platinum elite status, along with status from Marriott, Starwood, Hilton and Hyatt. This traveling lifestyle got us hooked on earning miles, points and chasing status.

Perception Adds Challenges to Special Needs Travel

For my first article here, I would like to talk about one of the reasons that traveling with a child who has special needs is so complex. Quite simply, I think it comes down to perception and assumptions.

Growing up, I had very little exposure to children with needs that were different from mine. Into adulthood, I again had very little exposure to anyone with kids who required extra help. I did not actively avoid it, but I just was not naturally exposed to very many people with special needs or challenges. Given this background, I like to give everyone the benefit of the doubt. I do not expect people to know all the different challenges a child (or adult) with special needs may face.

Not All Airline Employees Know the Rules

On the flip side, I do expect airline employees to know the rules as they relate to travel. Or, if they do not know the answer to try and find an answer that works for everyone versus just saying, “No” or “Get off the plane” or “That doesn’t apply to you,” which happens all too often and sometimes shows up on social media.

Our needs traveling with Westin have changed greatly over the years. On the mobility side, we have gone from bringing a stroller, to a stroller and a walker, back to just a stroller and now we travel with a wheelchair. Westin can walk, but he is slow and struggles with long distances, changes in surfaces and going up and down stairs. Westin had a feeding tube, which led directly into his stomach, for his first four years of life. We would use a pump or syringe to put milk or blended food directly into his feeding tube, even when on the road. He spent about a year eating only thickened pureed foods, like thick baby food, and now is on a gluten-free, mostly vegan diet. Luckily, we fly out of Austin–Bergstrom International Airport and it has to be one of the best airports to find complex diet-friendly foods.

Since we have started traveling with a wheelchair, we have had exceptional service on every trip. While we often hear about TSA horror stories, sometimes they get it right... like when a TSA agent helped a teen with autism navigate the airport at rush hour.

However, our experiences were not as smooth when we previously had our 6 year old in a stroller.

Why Perception Plays Such a Huge Role

No one questions an older person in a wheelchair as needing additional assistance when going through security, boarding a plane or getting his or her luggage. In fact, many people go above and beyond to do their best to lend a hand. I can also bet if anyone at the airport questioned their needs or was rude, this would quickly become an escalated and potentially viral incident. This is not always the same experience you receive with a child with special needs, again, because of perception.

Things That Really Happen to Special Needs Travelers

Let me summarize a few of our perception-related encounters:

• On numerous occasions, we have lined up for disability pre-boarding only to be told by a gate agent that families are no longer allowed to pre-board with one person actually telling us to “get out of the way.”
• When Westin was a bit older and traveling with a stroller because of his mobility issues, it was a real challenge for some people to understand that it was an adaptive aid like a wheelchair. We lost this battle on at least one occasion and his stroller was checked all the way through to baggage claim at our final destination, as opposed to having it treated as a wheelchair and available on the jet bridge.
• We were questioned about, and had to open, every baby food pouch we had with us — even after explaining the situation. Because Westin was older and we did not have a baby with us, it was challenging at times to get others to understand and approve his special dietary needs.
• Back in the tube-feeding days, we would make our own blended food following a strict ingredients list. We never had the food taken away (as that would have been a no-fly situation for us) but one of us always had to be patted down. Interestingly, we got to pick which parent TSA patted down, which seemed to defeat the presumed purpose of the additional screening
• One gate agent said under her breath, "I can't believe they want to pre-board with just a peanut allergy." We had no idea what she was talking about, but she refused to let my wife board with us, so I was struggling trying to get the stroller folded up and holding a heavy Westin (he couldn't walk until he was nearly 3). The pilot saw me and asked if I was by myself. I said no but that the gate agent would not let me wife board with us. He took off, and about 30 seconds later, my wife showed up.

Tips to Manage Special Needs Travel With Children

What can you do to avoid these situations if you are traveling with a child with special needs? First, of course there is not much you can do about the way you are perceived by others. But, you can position yourself in a way that may help others assist you more effectively.

Communicate Early and Often

What I find helps best is to communicate your family's needs to basically everyone: ticketing agents, TSA, gate agents and flight attendants. Remind them as needed during your trip. You might need to explain why you need something extra beyond the regular allowances -- like why we have 20 pouches of baby food, or why we have a pump, feeding bags and syringes.

Use Any Helpful Adaptive Aid

If you are on the fence about bringing that walker, wheelchair or other adaptive aid on your trip, do it! It makes a world of difference in not only getting around, but it also serves as a recognizable symbol to others that there is a special need present. Also, make sure you look into all available services from the airport and airline ahead of time. Be aware that the few times we have used airport wheelchairs (not by our choice), they only had adult-sized chairs with no seat belts, harnesses or additional support.

Call the Airline's Disability Assistance Line

The airline disability assistance lines are a great resource for information. However, keep in mind they do not seem to communicate with anyone outside of their team with any consistency. Rather, they just tell you how things should work when you travel. This can almost give a false sense that things will go smoothly, when it really all depends on the airline employees you are dealing with at the time.

Lean on TSA Cares

If you have concerns with TSA, they have a program called TSA Cares. This is something I have not had experience with (I wish they had this when our son was younger), but I have heard great things from others. You can find out more on the TSA website or call (855) 787-2227 (Federal Relay: 711). I will offer the warning that I would treat this service like an investment in that: Past performance does not guarantee future results. Meaning things might go a different way when travel day arrives and you are working with whichever TSA agent is on duty that day.

Bottom Line

I look forward to hearing about your experiences at the airport, at the gate and on the plane when traveling with a child with special needs. We will share more of our own tips, stories and learnings from continuing to travel with a child who loves flying, and just happens to have special needs.