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The Pope Will Meet Children With Autism: Great! Here’s One Special Request

Wednesday, November 19th, 2014

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.

From my other blog:

Good Night Moon: Special Needs Edition

A cool way to describe kids with special needs

Raising kids with special needs: Why it’s good I didn’t know then what I do now

 

Image of Pope Francis kissing child via Shutterstock

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Tags: | Categories: To The Max

If This Is The Future Of Plane Travel, Special Needs Parents Are in Trouble

Thursday, November 13th, 2014

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?

Exactly.

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.

American Airlines’ site notes, on its Accessibility And Assistance for Customers With Disabilities page, “American and American Eagle want every customer to enjoy flying as much as we do.” Um, right. After you nearly die from heart palpitations about your reservations.

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.

From my other blog:

A cool way to describe kids with special needs

Good Night Moon: Special Needs Edition

Then I took my eyes off him, and it was OK

 

Image of plane in sky via Shutterstock

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A Brief History of Autism: The Infographic

Tuesday, November 11th, 2014

According to the CDC, 1 in 68 kids now have autism. The Pacific Child & Family Associates offered Parents.com the exclusive infographic below, which shows a timeline of autism spectrum disorder.

If your child, or someone you know has autism, learn more about the history of autism spectrum disorder, common myths about autism, and therapy and treatment options.

Early Signs of Autism
Early Signs of Autism
Early Signs of Autism

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Happiness Hit Of The Week: Community Buys Van For Boy With Special Needs

Friday, November 7th, 2014

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.

After a local TV station aired her story, strangers chipped in to buy a new van—within a day. The money she’d been spending to pay off the SUV now goes toward bills and food.

This is the kind of thing that reaffirms your faith in humanity.

From my other blog:

Goodnight Moon: Special Needs Edition

Raising kids with special needs: Why it’s good I didn’t know then what I know now

Then I took my eyes off him, and it was OK

Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs

Photo: NBC video screen grab

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6 Things I Learned When I Made A Friend With Down Syndrome

Tuesday, November 4th, 2014

At first, writer Judy McFarlane didn’t know what to make of a friend’s request to help a young woman who wanted to write. “Her name is Grace, she’s 23, and she has Down syndrome,” her friend said. “Would you meet her for an hour or so and help her get started?”

This was in 2005 and, recalls Judy, “My immediate reaction was negative. I’d never met anyone with an intellectual disability. How could someone with Down syndrome think about writing? How would we talk about writing? Or talk at all? What if she became frustrated, upset, even agitated? But Grace had said out loud, I want to write. The words I hadn’t been able to say when I was her age. She’s braver than you were, I told myself. And so, with much hesitation and fear, I went to meet Grace.”

The result of their collaboration: Cinderella-Grace, Vancouver Princess, a modern-day fairytale in which Grace cast herself as a feisty princess who marries her prince, honeymoons on the Titanic, has three daughters and becomes a famous spy. Judy helped Grace edit and revise her writing. “Her parents published her book, her church held a book launch, and Grace displayed her book at the World Down Syndrome Congress held in Vancouver, Canada,” she says. “Delegates from over 30 countries took Grace’s book home with them.”

Now, Judy has written a book about her experience, Writing With Grace. Reviewers describe it as “beautiful” and “absorbing and moving” and “brimming with insight that inspires us to re-examine our attitudes towards both ourselves and those we deem to be different.” Here, some key things Judy learned on her journey with Grace:

A person with Down syndrome is a person, with Down syndrome

Before getting to know Grace, I saw her as Someone With Down Syndrome. It was as if the real Grace was hidden by a dark cloak called Down syndrome, making it impossible for me to see her. But as I got to know Grace, I began to see her for who she is – someone who loves to read, likes learning a new language, someone with a good memory. Someone who is not cheerful all the time, who can get annoyed or angry or frustrated like anyone else. Someone who has dreams. And loves going to Starbucks!

People don’t know how to interact with disabled people

One day, as Grace and I read a speech given by a young Japanese woman about what it meant to her to have Down syndrome, Grace blurted out, “My truth is too scary. I like to hide my real truth.” When I’ve been out with Grace, I’ve seen a variety of looks directed at her—unease, discomfort, and even, once or twice, outright hostility. Others appeared not to see her at all. It’s rare for someone to smile at Grace and say, “Hi, how are you?” Grace always seemed to take these reactions in stride. But after she blurted out her words, I realized she had noticed and concluded that having a disability is a scary thing. And she’s right. It takes courage to go out every day into a world that does not always welcome you, that sometimes gives you the message that it wishes you were not there.

There’s no one-size-fits-all with Down syndrome

There’s a tremendous range of abilities for people with Down syndrome. Some are non-verbal, some are able to hold down a job and live independently, some can drive a car, act on TV, or even graduate from university. All of which tells me how ignorant I was before I met Grace, when I made assumptions about what she couldn’t do.

Inclusion is a nice word, but….

There’s no question we’ve made enormous progress in the treatment of those with disabilities over the last fifty years. Laws now provide for inclusion in many areas, such as education and employment. But real inclusion, I’ve come to see, is not just about legal rights. It’s about whether someone feels welcome, that he or she belongs. And that happens on an individual level. Do we look someone in the eye? Do we smile at them? Do we include them in the conversation? In his wonderful book, The Body Silent, Robert Murphy (a former Columbia University professor forced to use a wheelchair because of a spinal tumor) wrote that those with disabilities often stand outside the formal social system, as if they’re in a strange darkness, like an eclipse of the sun or the moon. When I read that, it struck a chord with me. Before I met Grace, to me it was as if those with intellectual disabilities were shadowy, almost invisible.

Fear is a powerful force of exclusion

Jean Vanier, who founded L’Arche, an international organization that provides support and homes for people with intellectual disabilities, has written that we are frightened of those who are different, that fear is at the root of all forms of exclusion. I recently experienced this close to home. Almost every day, I walk through my neighborhood park. I often pass a man who lives there, camped out beside the park caretaker’s building. In all the times I’ve passed him, he’s never once looked up at me. And I’ve never once said hello to him, although I’ve often wanted to. He always seemed so alone, so unreachable. And I was afraid of him, afraid of how he’d react to me.

Yesterday, he was standing right beside the path. I don’t know why, but as I passed, I said good morning. He looked up at me, and for the first time, I saw his blue eyes. A half-smile crossed his face before he looked down again. I walked on, and then I cried. For his loneliness, and for all the lost times when I could have spoken up, when I could have looked him in the eye and smiled.

There are unexpected moments of delight

One day, after Grace and I had been interviewed by a local magazine about her book, we were driving home. Grace asked me to sit in the back seat with her, while her mother drove. As we drove along, Grace turned to me. “I’m a famous writer now,” she said. I agreed that she was, in a way. We drove along for a few more moments, then Grace said, “So where’s the black limousine?”

I laughed and broke the news that most writers never get a black limousine. And then we carried on. Grace would always have her book and nothing could take that away from her. And I knew I would find a way to tell both her story and the story of how she changed me.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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