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No Fear of Flying

A mother talks about life with her autistic son.

It’s 2:00 AM, and through moonlit shadows I see my son standing next to his bed in my mother’s guest room, searching for me in mute appeal. I slide off the window seat that doubles as a sleeping space and walk towards him, with the intent both to comfort him, and to beg him to return to slumber. We do this dance for the next forty-five minutes or so, until sheer exhaustion overtakes him and he clambers back under the sheets, and lets me wrap him cocoon-like in his airplane sleeping bag once more.

I slide back into my borrowed bed, knowing sleep may be an elusive fantasy not again realized until many, many hours from now. I resign myself to consciousness, and hope that the airplanes on Justin’s sleeping bag are not the only ones he comes in close contact with in the next twelve hours.

In theory, if we’re very, very lucky, for the first time ever my boy will step foot inside a plane. My family is hoping to fly to Disney this fall, and I knew that if we had a chance in hell of getting my almost nine-year-old son who has moderate-to-severe autism in the air, we’d better have a practice run. Luckily, my mom had heard that US Air was running a free program with Autism Inclusion Resources out of Philadelphia Airport, one which caters to families with autistic children. 

The event takes families through every aspect of the travel experience, from checking baggage and security checks, to boarding the plane and baggage claim. Months ago we were able to secure a spot for their spring event (they generally hold it once in the spring, and once in the fall), and at the time I was quite eager to see how Justin held up, and was fairly confident he’d love every aspect of it.

Unfortunately in November he became ill with a garden-variety virus, one that when it released him left behind some unwanted extras. We saw the return of aggressive tendencies which had lain dormant for years, body tics which shook him from head to toe, and a vacant expression that often claimed his countenance for hours at a time. His teachers and home therapists were concerned as well, and after it became apparent these unwelcome afflictions weren’t going to disappear any time soon, we sought help.

Four months, three specialists, a debacle of a medicine change, and half a dozen tests later, we were back at square one. We put him on the original medicine that had seemed to improve his life so much, and upped it a bit. Within a few days we saw some improvement. And as I contemplate that progress on my cushy window seat in the wee hours of the morn, I remind myself we’ve only been dwelling in that more peaceful oasis for a week. Nothing with autism (or life in general), is ever guaranteed. Eventually strong sunlight banishes the moonbeams from view, and after having caught another hour or two of rest I see my son stretching from across the room, a glorious smile on his face.

It’s a good start, and his ebullient mood carries him through breakfast and that semi-harrowing rush hour traffic to Philadelphia International. Thankfully we’ve been well-prepped by Autism Inclusion Resources, the non-profit sponsoring the morning. I’ve had a phone interview with one of the founders, Becky Jacket, which helped me both envision how the day would unfold, and imparted valuable information to the group as to how to make the day more positive for Justin as well.

We’ve been sent a social story, family travel tips (since I fly these days about as frequently as I win the lottery, these were particularly valuable), and a detailed itinerary as to what to expect from the experience. We are as prepared as humanly possible. But sometimes with Justin, that doesn’t count for much. I’m questioning my decision to even attempt this excursion about five minutes in, when my son is almost pulling my arm out of my socket in front of baggage check, imploring me to quit this place and return to grandma’s car.

I whip pepperoni out of my purse and parcel round slices one by one into his outstretched hand, making him mouth the word “more” after he’s consumed his morsel, hoping it will buy us some time. It’s his latest favorite snack, and I’m conferring magical properties upon it at the moment, because we’ve made it this far, and it’s suddenly apparent to me how much I want this to work for him. I know, it’s just a family vacation.

There are so many families struggling just to pay for services for their autistic kids, and we’re contemplating the Magic Kingdom. I completely comprehend how lucky we are to be in this place. But honestly, the last four months have been hell. I’m ready for something, anything, just to be simple. And for once, it is. Cold cuts seem to do the trick for my boy, and he waits patiently as Rick Dempsey, ADA coordinator for Philadelphia Airport, lays out the impending steps for the waiting families and children. There are only a few participants today, one with a child who is similarly affected, and several who are very mild in comparison.

Miraculously all of them, including mine, make it through his welcome speech, which is great practice for the multiple waiting periods which occur at any airport. Justin stands calmly next to us as we pretend to check our luggage and acquire our boarding passes (families can actually check their bags, we chose not to), and happily takes my hand as we venture on to security. This is where I anticipate the most problems for my boy. And once again, he simply blows me away with his compliance. We sail through the checkpoint, Justin standing calmly at our sides as we reclaim shoes, his iPad, and multiple electronic devices devised to keep him entertained on our journey. I have a bonding moment with an airport volunteer who praises Justin for his behavior, and shares his own story of his son’s autism.

I feel my heart-rate slow a bit, my pulse begin to settle for the first time since that middle-of–the-night awakening. My boy waits patiently for the entire group to finish, and eagerly walks beside me to the boarding area, where once again he is required to wait for approximately twenty minutes. Generally, Justin wants to leave even the most reinforcing destinations after twenty minutes. The fact that we’re still here, pepperoni not withstanding, is a miracle. Finally, we’re called to board the plane (destination Philadelphia), and my son revels in it all.

He wears his seatbelt the entire “trip." He excitedly consumes the pretzels the kind airline attendants offer to him. Justin and I even take a jaunt to the bathroom when the line clears a bit, and I discover he’s an old pro at navigating that slim space with his mom. I even have the opportunity to thank some staff and tell them how much this opportunity means to us, how grateful we are that they’ve volunteered their time.

They share with me that they feel the same. I am inordinately proud I manage not to bawl all over them in the back of an airplane. Eventually we “land," and make our way to baggage claim. I walk my son around the corner from my mom and ask her to heave our suitcases onto the carousel, and I show Justin how we relocate our luggage (of course, that is when his mother recognizes it).

Our leader thanks us for coming, when it should be us thanking him and AIR. Every single participant involved, from the volunteers at Autism Inclusion Resources and participants from the Department of Transportation in Washington, DC, to the employee/volunteers from Philadelphia International Airport to the United Airlines crew and the pilot in particular (who flew in on his day off to help), have been wonderful. None of them could have been more professional, or more prepared. Our family is forever indebted.

Finally, the experience concludes. But the ramifications for Justin, the doors this day has thrown wide for him for future opportunities to travel, are just beginning to open. From the McCafferty family, to all those who participated in the making of this day, we thank you from the bottom of our hearts. Look out Disney. Here we come.

To learn more about the program, check out the Philadelphia International Airport website at:  http://www.phl.org/ada.html/, and scroll down to the section entitled “Airport Autism Accessibility Program” Email address for the AAAP:  accessibility@phl.org Email contact for Autism Inclusion Resources (Wendy Ross) wendyrossmd@gmail.com

This piece originally ran on 4/25/12
 

For more on my family visit my blog at autismmommytherapist.wordpress.com/  

Follow me on Facebook at Autism Mommy-Therapist


Stephanie Salardino February 26, 2014 at 06:43 AM
Amazing story! :)
J February 26, 2014 at 09:16 AM
♡:-)
Jeanne1956 February 26, 2014 at 12:36 PM
What a wonderful program!
Kimberlee Rutan McCafferty February 26, 2014 at 02:02 PM
Thanks to all of you for reading it!
Me February 26, 2014 at 02:27 PM
Great story. I see that you originally wrote it in 4/12. Did you make the trip to Disney? How did it go?
Janet Persing February 26, 2014 at 06:01 PM
Your well-written article brought tears to my eyes!
Kimberlee Rutan McCafferty February 27, 2014 at 03:05 PM
I did go to Disney, and it was a success! I wrote about it on my blog at autismmommytherapist.wordpress.com/ Go to "AMT faves" and scroll down, you'll see it. Thanks for asking!
RT Higgins February 27, 2014 at 11:24 PM
I had no clue what this article was about when I clicked the title, figuring it was probably about some boneheaded TSA policy or something. By the end, I was leaning forward at my desk and quietly rooting for your son :D Thanks for sharing your experience...I've had a couple interesting encounters with people on the autism spectrum, and in one of them in particular where I was leading a scout training program, I realized how little I understood about how they see and interact with other people and situations. So I appreciate the opportunity to gain some insight. Thanks! (and congrats on your successful vacation!)
Kimberlee Rutan McCafferty March 02, 2014 at 12:41 PM
Thank you, that's why I write, so people can gain a better understanding. I appreciate your kind words so much, and thanks to everyone who commented!
I've Got the 'Scoop'!, LLC March 11, 2014 at 02:05 AM
Kimberlee, such a beautiful story… and what an incredible program!!! Will definitely share this, as I know many whom would benefit! Amazing, 29 years later, I still learn about the best resources through other parents! Having a child with significant special needs, cognitive and now physically ill, we appreciate the smallest accomplishments our children make… but this was just grand -- or shall I say Magical!!! : ) I just loved reading it… and appreciate your sharing the information!!! Lori

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