This Saturday, Pope Francis will make history: He will meet with autistic children and their families to raise awareness about the condition and help end the stigma. The visit will cap a week-long international conference on autism hosted by the Vatican’s health care office, reports ABC News, which is bringing together more than 650 people from 57 countries.
Even with the significant attention paid to autism in the United States, where an approximate 1 in every 68 kids is on the spectrum, there continues to be stigma. It is far worse in other countries—including in Italy, noted Dr. Stefano Vicari, head of pediatric neuropsychiatry at the Vatican-owned Bambino Gesu hospital in Rome. In some countries, children with autism and other special needs are hidden away by their families out of shame. In Bangladesh, for instance, there is a common false belief that autism and other mental disorders are caused by ill spirits.
During the visit, the Pope will deliver a speech to hundreds in the Vatican audience hall, complete with music and movement for the children. The attention this visit receives should hopefully send a worldwide message—to people of every religion—that kids and adults with autism deserve acceptance and respect.
If I were at this conference, I’d have one request for Pope Francis: To publicly encourage places of worship to welcome children with autism and other special needs. As I know from my own experience, and from that of other parents I’ve met through social media, places of worship of all denominations are not always accommodating to kids with special needs. One survey found that a third of caregivers of kids with special needs say their church does not have a Sunday school program for their children. Per another statistic, an estimated 9.6 million caregivers of kids with special needs have no services to send them to. Some places of worship aren’t even open to including kids with special needs. As I’ve said before, you’d think that churches, temples, and mosques would feel compelled to answer to a higher authority when it comes to spiritual accessibility.
Just a few words from Pope Francis could make a difference in how places of worship welcome kids with special needs. And that would surely answer a lot of special needs parents’ prayers.
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.
Angelique Bedwell, a single mom, used to have an SUV that she used to transport her 13-year-old, Jason, who has cerebral palsy. Then it got stolen from their apartment complex in Grand Prairie, Texas. When police found it a day later, it had been stripped.
On Sunday, November 2 at 2 AM, we turn back the clock an hour. Although moms and dads everywhere may wish they could sleep during that extra hour, the reality is most kids will be up and at ‘em. For parents of children with special needs who already have sleep challenges, this can be an especially tricky time of year. A few key strategies to make things go more smoothly for everyone:
• Ease into it. For the next several days, move up your child’s nap and bedtime by 15 minutes. Come Sunday morning, your darlings may just sleep in for most of that extra hour. This worked well for our family when our kids were little.
• Find the time. If your child is learning how to tell time, or has never had her own clock, this is a good moment to get her one. I let my daughter pick out an inexpensive digital clock online. On Saturday night, I plan to explain the whole “Spring ahead, fall back” thing, turn the clock back and—perhaps most importantly—show her the time when she is allowed to knock on our bedroom door in the morning.
• Make coming home in the dark welcoming. Returning to a pitch-black house after a family dinner out tends to make all of us hate Sunday nights even more, but we’ve found a new solution. Our family got a Piper to try, a chic mini home security and video monitoring system you control through an app. It’s been great to watch and listen in on the kids while I’m at work (there’s a 180-degree lens, so you can view an entire room) and talk to them through the two-way audio. We also got a door/window sensor, for extra security. Our favorite feature is the Smart Switch sensor, which plugs into an outlet; we connected a living room lamp to it, and now before we get home I turn it on from the Piper app so there’s a nice warm glow in the house when we drive up to it. When we’re out I change the setting to “Away” so the motion detector can alert us if anyone tries to break in and steal the Halloween candy.
• Actually use the shades. Pull them down at bedtime; you don’t want sunlight waking your children up any earlier than they might be inclined to because of the time change.
• Create a sleep chart. If the time shift has thrown off your tot, make a chart with columns for Bedtime/Wake-up Time/How I Feel. Fill them out with her daily, and talk through any grumpiness issues.
• Have a time-switch treat. At our house, we make chocolate-chip banana pancakes the morning after we switch back to standard time and, in the spring, the morning after we go to Daylight Saving Time. No matter how early we rise and shine, it makes getting up totally worth it.
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).