This is the saga of my recent experience with American Airlines. I’m sharing it because I believe it illustrates the need for reform in how special needs families are handled. And because I snagged a secret phone number that could help other special needs parents.
The first sense I had that something was wrong came on Sunday night, when I called to check on seat assignments for our Florida vacation in December. As the American Airlines staffer reviewed our family’s reservation, she noted that our flight home on January 3 was at 9:00 p.m.
What?! We had originally booked a return flight for 11:50 a.m, then received an email that our flight switched to 3:00 p.m. But we had not been notified that it changed again, and that posed a serious problem. My son, Max, who has cerebral palsy, is prone to seizures when he gets tired. A flight arriving after 11:00 p.m. was out of the question.
I had to get off the phone to tend to the kids, but once they were sleeping I called back. After waiting on hold for 1 hour and 40 minutes, I hung up, called again and got a supervisor on the line.The choices he gave me: 1) Cancel the tickets, for a full refund (not a great option—getting a reasonably priced fare at this point for the holidays seemed unlikely); or 2) Book a return flight home at a different airport, an hour further away from our home. Max sometimes gets car sick, so that seemed like our last resort. As we spoke, I grew increasingly distraught. “So who at American Airlines will be helping if my son has a seizure on that 9:00 flight?!” I asked. Said Mr. Irving Hall, ever so calmly, “Ma’am, you are responsible for your son’s medical care.” He was perfectly correct, of course, but it only upset me more.
I had trouble sleeping that night. Air travel with a child who has disabilities or a medical condition can be complicated and nerve-rattling enough, without feeling like nobody at the airline cares. The next day, I called another supervisor. She suggested that I could call daily to see if other flights opened up. Because I do not have enough calls in my life to make for my child with special needs.
Meanwhile, I started sending out disgruntled tweets. The AA account responded almost immediately, offering to help. At one point, I got this promising message:
Aha! I called AA’s general reservations number and asked to be connected to the Special Assist Desk. The staffer put me on hold. “They won’t talk with you until it’s closer to flight time,” she said when she got back on the phone. WHAT?! Nobody at the Special Assistance Desk could hop on the line to reassure a freaked out special needs mom?
No parent is ever pleased to have vacation flights messed up. But having a handle on travel plans way in advance is especially critical for parents of kids with disabilities (as well as people with disabilities). We need to know about airport and plane conditions, get answers to questions—and get peace of mind.
I sent an email to media relations, asking for input. I got a call from customer service rep Janna Pendley. When I asked why we hadn’t gotten a notice about the flight schedule change, she said that not every passenger liked to receive those updates. In fact, she informed me that my flight had changed eight times since we’d booked it in March; little had I known when we booked a ticket that we’d be playing Russian roulette. American Airlines and US Airways were merging, leading to a lot of flight changes. I pointed out that if I had gotten a notice at the time the flight changed (10 days before), I could have jumped on the phone and attempted to find an earlier flight. She said she would pass along my concerns.
AA’s media relations never did respond to this question: “How, exactly, does the Special Assistance Desk work with assisting special needs families concerned about flights if they will not get on the phone with them?”
I finally decided to shorten our vacation by one day so we could get a better flight, and called to change the reservation. Then I received my confirmation by email. The agent had, inexplicably, dropped me from the outgoing flight. So now my family was on a flight to Miami, but I wasn’t. I called. Thirty minutes later, an agent said I was all set. I asked her to go over our reservation. My husband and kids no longer had seats on the return flight home. After we hung up, I logged onto the website to double-check. The kids were listed as adult passengers. They were kids when we booked the trip, and they still are. I didn’t have it in me to call and correct this.
Of course, the flight could still change. And AA may or may not let us know.
To be fair, I gave other major airlines a test call. Terry picked up at Delta’s Disability Assistance hotline (404-209-3434, 24 hours a day). Every special needs parent planning a flight should have Terry in her life. I asked what the desk could help with, and it was similar to the services AA offers as stated on its Planning Ahead page—once a passenger was ticketed, the department could assist with special seating, service dogs, electric wheelchairs and other services related to ADA regulations. But Terry—a warm, friendly, live human being who’d been on the job for years—was more than willing to answer any of my questions about special needs travel and lend insight. I could even call Disability Assistance and they would book the tickets for us, he told me. “We can handle it all, from start to finish,” he said, adding, “I wear so many hats, I could use a hat rack!” At some point, I mentioned a problem we used to have when Max was younger: He’d repeatedly kick the back of the seat in front of us. Terry had handled similar concerns with other passengers. He said they could seat families like that on the bulkhead on certain flights, or in seats with extra leg room. I thanked him profusely when I hung up. “We handle disability requests better than any other carrier, and we’ve been awarded for that too,” he said, proudly.
Next, I called United Airlines. Within two minutes, I was on the phone with Kimberly, at the 24-hour Disability Desk (800-228-2744). I told her I had no reservation, just some questions. I didn’t even give my name. Like Terry, Kimberly was glad to share input before I had a ticket, and also chatted with me for 10 minutes. Typically, she makes disability accommodations after seats are booked. When I mentioned the kicking-the-seat problem, she noted, “A lot of parents tell me they book seats so one parent is sitting ahead of the child who kicks.” Once again: Real, human, comforting guidance.
It seems that American Airlines is very helpful once travel plans are in place. One mom of a kid with autism tweeted, “I found them very accommodating on our last flight.” And a woman with cerebral palsy messaged me to say, “Just for the record, I’ve had great service from American so far, in fact their special services department called ME to ensure a good trip.” That bodes well for our flight, but does not excuse the wringer I went through.
Ultimately, schedule changes happen with every airline (eight times seems just a wee bit excessive). Long call waits happen with every airline (1 hour, 40 minutes seems just a wee bit long). Ticketing mistakes happen with every airline. But as a special needs parent with a real concern about her child, the lack of consideration and support I experienced with American Airlines seems so wrong. The scheduling problems I endured wouldn’t have been nearly as frustrating if only, at some point during the four-plus hours I spent on the phone, I could have connected with a disability specialist.
With its upcoming merger, American Airlines will be the world’s most trafficked airline. It’s time they revamped their system so that Special Assistance Coordinators are readily available to address questions and concerns from parents. Sure, any reservation agents can share special needs travel information listed on their screens, but there’s nothing like talking with staffers who really know special needs. It’s not just heartening, it’s necessary.
Yesterday, I got the direct phone number for American Airlines’ Special Assistance Desk—800-237-7976, open 7 AM to 7:30 PM Central Time on weekdays, and during the daytime on weekends. It’s not listed on the site, but I have my sources. I called and spoke with Cindy, who was very nice (and she didn’t care whether or not I’d booked a ticket). She noted that how they work with families is that first you book your reservation, then you let the representative know your child has special needs, then someone from the Special Assistance Desk calls you. She said that they call close to the date of travel; when we spoke, they were getting in touch with people whose flights were two weeks away.
How unnerving is it for special needs parents to leave planning that close to a trip?
Fear of flying takes on a whole new meaning when you’re a special needs parent; every bit of information, assurance, insight and good old consideration helps. Listen up, American Airlines.
Wings for Autism, an airport “rehearsal” that helps kids with autism feel calmer about flying, held a program at Piedmont Triad International Airport in Greensboro, North Carolina this weekend. Run by The Arc of the United States, and using a Delta plane, it allowed kids with autism to experience what it’s like to go through the hustle and bustle of an airport and security, and to sit on a plane with their families. Here’s a video of the program in action at another airport:
If you have a child with autism (or sensory issues, as I do), you know how stressful plane travel can be. Max went through a phase in which he repeatedly kicked the back of the seat in front of him; it helped calm him down, though it did anything but for the nearby passengers. We had to cushion his knees with our winter jackets and, once, switch seats so that I was the one in front of him. Thankfully, he grew out of it.
What’s doubly awesome about Wings for Autism is that it gives airport, airline and security staffers the chance to observe and interact with kids with autism, and better understand them. Unfortunately, you’re on your own for dealing with the glares you occasionally get from fellow passengers. Once, we sat near a woman who remarked to her kids about the “annoying noises” Max was making (basically, his form of speech). I leaned over and said, “That’s his way of talking.” And she still gave me a look. Nice!
There are five more Wings for Autism program dates coming up, in Boston, Washington and Anchorage (here’s the schedule, with a link to registration information).
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
In a few weeks, we’ll be on our way to the Most Magical Place on Earth. It will be Norrin’s second time on an air plane. Unlike the first time taking a plane together, I am not nervous. The first time we flew, I was frantic even though I prepped for months. But there was no need to worry. Norrin really surprised me and I was so proud of him.
Traveling with special needs children requires careful planning. If your child has never been on a plane and you’re thinking of planning a vacation – here are some tips that can help.
Prepare. Even if you don’t have any immediate plans for a trip, start talking about planes and pointing them out to your kids. Talk about the kind of places or family/friends you can visit by taking a plane. Many kids with autism and other special needs, require social stories to help them through new experiences or teach everyday skills. Carol Gray has written two books that may help: My Social Stories Book and The New Social Story Book.
There’s also a really cool app by Avril Webster called Off We Go: Going on a Plane. The app prepares special needs children and also includes “some of the typical sounds that they would hear during their journey.” The Going on a Plane app is $3.99 and compatible with iPad, iPhone or iPod touch.
Do Your Homework. Think about the airlines and airports you’ve traveled with in the past – which ones gave you the best experience? If you have friends that have traveled with their special needs children – ask for suggestions. Call airlines and see what accommodations can be made for your special needs child before making your final decision.
Another thing to consider is the duration of the flight. If your child has never flown before, don’t book a 5 hour plane ride or one with multiple layovers. Keeping it under 3 hours is probably ideal.
Pack Light (if you can). Traveling by plane requires a lot of waiting and long lines. If you can manage to do carry-on luggage only – go for it! That way you avoid the checking in your bag line and waiting to claim your bag after.
Prepare some more. You want to keep your kid occupied for a significant amount of time so a bag of goodies is a must! Load up the iPad or tablet with new apps or buy a new toy or activity book for the ride. Bring candy or a special treat for your child to enjoy. And don’t forget to pack any other special items like noise-cancelling headphones or favorite comfort item, pillow or blankie. It could be the thing that prevents a meltdown.
And Speaking of Meltdowns. A mom wrote to me and expressed concern about her child having a meltdown on the plane. “Prepare for the worst, hope for the best” as the saying goes. If a meltdown occurs, deal with it the best way you can and forget about if people stare – just focus on your child. If you anticipate a meltdown prior to boarding the plane – talk to the flight attendants. They want to ensure you have a pleasant experience, so do not be afraid to ask for help if you need it.
Soon after US Airways got a $1.2 million fine for failing to provide proper wheelchair assistance to fliers, news came out that the U.S. Department of Transportation will make flying more accessible.
Some 300 complaints were filed by US Airways customers from 2011 to 2012 about lack of wheelchair assistance at the company’s hub in Charlotte, NC and Philadelphia International, news stories note. Some customers missed connecting flights because of delays getting wheelchairs at the gate, others were left unattended for long periods of time.
The new Dept. of Transportation regulation that will particularly benefit parents whose kids are in wheelchairs is that airlines will now have more options for stowing wheelchairs, reports Disability Scoop. Manual, folding ones can be stored in a closet or even strapped to a row of seats.
I’ve heard horror stories of kids’ wheelchairs getting damaged in transit; hopefully, it will happen a lot less frequently. Going on flights with children who have special needs is never easy, especially if you have a child with sensory issues who is fearful of crowds as we do. There have been times when our family has been allowed special entry through the security system, and times when Max has had screaming crying fits as we waited on line.
There’s a great program called Wings for Autism that lets kids do practice runs at airports. They go in a security lane set aside just for them; board planes provided for the day by airlines; buckle up; and even get a tour of the cockpit. Although the planes never leave the gate, the doors are shut to simulate a real flight. The program takes place at Boston Logan airport twice a year, with one happening earlier this month and another next April. Wings for Autism is set to expand across the country in upcoming years. Meanwhile, this September Blue Horizons for Autism launched at Kennedy International Airport in New York, a new flight rehearsal program for kids from JetBlue and Autism Speaks.
Meanwhile, parents can call the Transportation Security Administration’s TSA Cares Help Line toll-free line at 1-855-787-2227 before flights for questions about screening policies, procedures and what to expect at security checkpoints. JetBlue, for one, has a dedicated Disability Assistance Line: 1-855-ADA-LINE (855-232-5463).
“All air travelers deserve to be treated equally and with respect, and this includes persons in wheelchairs and other passengers with disabilities,” U.S. Transportation Secretay Anthony Foxx said in a statement about the new regulations.
To that I add, anything that makes the lives of families traveling with kids who have disabilities easier gives me a real high.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Memorial Day Weekend came and went, kicking off the summer season. Over the next few months, families will take daily excursions to the beaches, parks, aquariums and zoos, week long vacations or quick weekend getaways. However traveling and venturing out with special needs kids can be stressful, especially when the destination is unfamiliar and crowded.
The summer Norrin was first diagnosed we didn’t go out much and when we did, we didn’t go far. But each summer since, we’ve gotten more adventurous. Over the holiday weekend, we went downtown to Times Square and walked around. We don’t want to feel confined to four walls and familiar places because we’re scared. We also take a few simple precautions before and after walking out the door.
Take a photo before you head out the door. Two years ago when we went to Disney World we took a photo of everyday Norrin before leaving the hotel. Since most phones have cameras, this is such a simple thing to do as a safety measure. During a moment of panic, recalling what your child is wearing may difficult. And its usually the first question asked. Having a photo will ensure your accuracy and officials will have the most current photo of your child.
Knowthelayoftheland. If you’re going someplace new, print out a map and familiarize yourself with your destination. Look for the bathrooms, guest services and possible exits. These days, amusement parks have apps. Create a game plan for the day and designate a meeting spot in case your group becomes separated.
Child Identification/Contact Information. Norrin knows his first and last name, our names, where he lives and his home number. (We’ve been working teaching him our cell phone numbers.) But he may not provide the information if asked. When we go out for day trips or vacations, we put on Norrin’s ID – nothing fancy, just a dog tag chain necklace with our information. He’s used to it now, so he keeps it on. There are also MedicAlert Bracelets and Tattoos With A Purpose.
Communicate with your group. My group usually consists of me, my husband Joseph and Norrin. Norrin isn’t the kind of kid that can walk ahead or trail behind us. His hand needs to be held at all times. (When we were walking around Times Square, if I wasn’t holding Norrin’s hand, my hand was on his shoulder.) If I have to let go of Norrin’s hand for any reason, I always tell Joseph. And I don’t let go, until Joseph takes Norrin’s hand. When out with Norrin, we always work as a team to keep him safe.
What safety measures do you take to keep your kids safe?