special globe, usa today, and my daughter

 

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{image is a photo of Katie and Brooke wheeling their bags through the Orlando airport last year.}

At the end of January, I was contacted by a travel reporter. He was planning to write a feature in USA Today highlighting Special Globe, an up and coming travel service for families including children with special needs. He was hoping I would contribute some thoughts. Given that I love the company’s premise, making travel accessible to all, I was on board.

He asked a number of questions about our travel experience, including which accommodations we’ve already seen the travel industry begun to implement, which are still lacking, and how we would envision a service like Special Globe being able to help.

I told him a number of stories, both positive and not, about our experiences. I sent him the following links for further background and color:

Why Jet Blue Rocks – by Me

Like Coming Home

I told him that Brooke loves to travel to see characters at amusement parks, and explained that they can be difficult to navigate without some significant help. I told him that the game changers for us are the disability passes (which most parks have) and, more than anything, staff’s time and patience.

I shared more links.

Thank You

Sesame Memories

Yesterday, the article went live.

When I read the first lines, I went cold.

Think travel is a challenge? Try doing it with a special-needs child.

Jess Wilson knows what that’s like. Her autistic 11-year-old daughter is prone to anxiety attacks when her family is on the road. So Wilson, a disability advocate who lives in Boston, tries to smooth the way with careful planning.

“Think travel is hard? Try doing it with a special-needs child.”

The clear message in that opening is that disabled kids like mine are (literally) unimaginable burdens / hindrances to travel.

The phrasing says to typical families, “Ha! You think YOUR life is hard, you have NO idea” and it says to children like mine, “YOU are the reason that my life is so hard that no one with a typical kid could ever understand.”

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{image is a photo of Brooke on a plane last year, wearing her headphones and watching Dora on her iPad}

Brooke, at almost twelve, is just beginning to read newspaper articles in school, albeit with a great deal of support. When I read the words from her perspective, I’m terrified of their implications for her. No matter how I try to turn them in the light, those two little sentences look the same – they propagate the alienation and stigmatization of kids who are already fighting both every day. And they’re followed by her mama’s name and my implicit endorsement of their sentiment. I’m trying not to cry as I type. Brooke, baby, when you read this someday, please, please know your mama would never have said those words.

These. These I would say …

Traveling with children is always a juggling act, but traveling with a child with special needs can present unique challenges.

No less true, but much less damaging and incendiary.

Undeniably, there are unique challenges upon which one stumbles when traveling with disability. Just as undeniably, they affect not just the disabled traveler, but, to a lesser degree, everyone in the family. But why can’t we say that just like that, respectfully? Why can’t we skip the incendiary one-upmanship in some imaginary round of Who’s Got It Harder and just say, “There are unique challenges” and, “Hey, isn’t it cool that someone is stepping into the void to help address them?”

The article goes on to offer some solid advice, highlight some great resources (like the Jet Blue program that I love so much) and provide some good ideas for traveling with people with unique needs. I’m very, very happy that the topic of equal access is being addressed and I’m grateful that Chris wrote it and USA Today published it.

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{image is a photo of Brooke in the cockpit of our Jet Blue flight, hanging out with the pilots, as you do.}

I want Special Globe to succeed. I want to see scores of other companies like them enter the industry in various ways and succeed too. I want accommodation of ALL travelers to be an ongoing topic of conversation at every transportation company and every resort and hotel and tourist attraction and restaurant and, well, everywhere in the world that serves and welcomes human beings.

And I really, really want us to remember that that’s what this is about – human beings.

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{image is a photo of Brooke, spinning in the Orlando airport while waiting for the bus to Disney.}

* For the sake of clarity, I think it’s also important to note that Brooke doesn’t really have “anxiety attacks.” She struggles with severe anxiety that is exacerbated by her communication challenges. She has meltdowns precipitated by that combustible combination. That said, it would be more accurate to say that, “as is common for many autistic people, she struggles with severe anxiety.

14 thoughts on “special globe, usa today, and my daughter

  1. I get this. So much.
    I see my son as hope and brilliancy. I don’t like using negative language but its a battle to get services he needs without making it sound terrible.
    I wish I knew about Jet Blue years ago. We had a horrendous experience in 2 airports/airlines and I even called ahead. When we got there it was like I had never even called. When I wrote a letter, I only received back “sorry” and a pamphlet on handicap access in airports. I’m glad to hear about Jet Blue though.

  2. UGH – he’s lucky he didn’t put that sentence in ” “. I hope you’re sending them a link to this post. If they are looking to be an asset to the disabled and their families – they need to be aware that multiple approaches must be disability friendly, and not just the travel, but the full-out attitude.

    Many hugs and thanks for all you do!!!

  3. My son has Autism and just talking of plane travel or roller coasters (planning a trip to Disney) his anxiety is shown and expressed. Thank you for this post. I will be coming back to it as we plan our trip. He has traveled before but only by car. I’m nervous and anxious about him on a plane but I also know that I will take every measure to make it happy for him. Thank you….you have given me somewhere to start. I hope people can someday focus on the ability of kids with Autism and less on the word disability. We don’t call Autism a disability in our house. Our son has always been told he has the ability to do anything. We might have to look at a different route but he knows he is always able. Autism is just another stepping stone along the way. I wouldn’t have it any other way.

  4. I Flew with my kids this Christmas on southwest. I explained the situation and we were given preboarding passes so we could all sit together. They manage the flights really well. I was happy with the accommodations that southwest was willing to make at the gate. Since we preboarded we were able to sit in the first row where there was more leg room and not so closed in.

  5. I have such mixed feelings on this. And actually, my feelings are only tangentially related to what you wrote (bad me, I know). So before I get into anything else I just want to say – I totally agree with all of this. With the importance of programs like this, with the importance of how we say things, with needing to remember that autistic people read those articles too, all of it.

    The thing that gets me is that I am an autistic adult. I don’t have anyone who will hold my hand or help me. There are no programs out there designed to make travel more accessible for me. And travel is one heck of a challenge. There was that time a few years ago in a train station when I wound up spending an hour rocking with my eyes closed and my hands over my ears, barely able to hold myself together, because the overload was Just. Too. Much. I never, ever fly.

    And no one, NO ONE, thinks that maybe helping autistic adults is important. The new groups coming in are just another in a growing line of help for special needs children, while totally ignoring the adults who are right here, who are still challenged, who still need help, and who ultimately just don’t do things because we are alone with our needs.

    • I hear you. I really, truly hear you. It’s funny, I don’t know if you saw this, but I coincidentally posted it this morning on Diary’s FB page:

      “I had to write a bio this morning for an upcoming event. I HATE writing bios, so I went searching for one that I’d already written in hopes of avoiding having to do it again. In the process, I came across an e-mail interview that I’d done a couple of years ago for an article in SheKnows. The interviewer, Maureen Rich, had asked, “What do you wish more people understood about autism?” The following was my answer.

      Good Lord, how much time ya got?

      That not speaking doesn’t mean having nothing to say. That there are myriad ways to communicate and interact with others. That when we talk about autistic people lacking core human traits like empathy, creativity and humor, it’s generally us, the neurotypical population, lacking the imagination necessary to understand that an atypical experience and / or expression of any one or all of those virtues does not mean that they don’t exist. That joint attention starts with trust and that trust starts with respect. That autism can be both an identity that is the source of pride and a disability that is the root of significant challenge – at the same time. That autism spans generations and that when we speak as if it is only found in children, we effectively dismiss the experience of the adult population and erase their stories from the autism narrative. That the only real experts on autism are autistic people. That it has changed me. And I’m forever grateful.”

      In other words, I get it, and it needs to change.

      That said, the Jet Blue program that I mentioned is not exclusive to nor even aimed at children. Anyone who needs the service can call ahead for it. Special Globe is specific to children, but in a very recent conversation, I heard about a similar type of service that was aimed at adults. Let me dig for the name of it. I’ll be back.

      But yes, I hear you.

    • Last year my daughter made an appointment with the local airport for a tour for her autistic son and NT daughter. We were getting ready for a trip to Disney. Cincinnati airport was GREAT. Nearly an hour to try out the security checks, walk on the airplane while it was nearly empty ( being cleaned) and even look into the “pilot’s seat”. Best part was the adult couple who was also getting a tour. They had extreme anxiety on a previous (failed) trip and were getting ready for their planned flight. We enjoyed and benefitted from each other’s past difficulties and the respectful way in which we were all treated. Humans, with issues getting past it and moving on.

  6. I’m a Special Globe travel partner and I was so excited to read the article — kind of a let down. Obviously not written by someone who lives with it or even “gets” it. Perhaps you can write a few articles on the Special Globe site and tell the world what you think! I’ll be looking for you…

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