Flying With Special Needs: The Rumble at 40,000 Feet

By on Jun 16, 2018 in Apraxia | 7 comments

Sometimes the worst experiences in the moment become some of my favorite memories, because they make the best stories.  Like Rory’s meltdown on Small World at Disney World and then subsequent meltdown on Living With the Land (another boat ride) at Epcot, on which I started singing the Small World song.  Both rides were AWFUL when they were happening, but looking back I can laugh and be proud of myself for surviving.  Because let me tell you, having a special needs kid is HARD.  Having three typical kids as well, I can say that our Rory is most definitely different in how we can deal with her.  When she is having a meltdown, or spiraling as we call it, there is literally nothing we can do but ride it out.  And if you have a special needs kiddo as well, you likely know what I mean.  There is no bribery, no rationalizing, no yelling or spanking or time out or disciplining that is going to stop it from happening.

So you can imagine my terror in booking my first flight with Rory, who just turned 4.  She has apraxia, sensory processing disorder, a chromosome microduplication and a healthy scoop of other symptoms that make being her parent very trying on a daily basis.  But there was a very good reason for booking this flight (more on that later), so as much as I wanted to avoid it, I bravely purchased our tickets for a journey across the country. My dad, Rory’s Grampy, agreed to come along to help me, thankfully, because I don’t think I could have done it on my own.

Man, what a story I got out of the third branch of our flight.

I’ll start by saying the trip out there, which had one connection, was pretty easy.  Rory really seemed to enjoy the flights, was excited to go on the plane and sit in her car seat, didn’t seem at all affected by the change in cabin pressure, and didn’t have any meltdowns.  I was lulled into complacency and thought we would be fine for our trip home (again, with one connection), while in reality I was setting up the perfect storm.

See, we brought my mom’s iPad (because we didn’t want her to associate her “talker” iPad with Proloquo2Go with being a toy) and had loaded Netflix with several of her favorite shows and movies downloaded to it along with a few games she liked and plenty of pictures to look at since that’s one of her favorite things to do.  Rory was exhausted from our whirlwind trip, and we had worn out all of her patience by getting to the airport 3 hours early, in hindsight a bad move.  And once we got on the plane, Netflix totally failed me.  Without going into detail on our technical snafus, we ended up high in the sky with no Netflix and a Rory who just wanted to watch something.  Trying to make it work was riling her up and she was getting very agitated, squawking and crying and fussing.  When we realized how frustrated she was getting, my dad suggested giving her some Benadryl (approved by her doctor) to help settle her down a bit, which had helped on her first flight, which again in hindsight turned out to just be bad timing because it made her want to sleep on this flight instead of the next one.  The more I tried to fix the iPad, the madder she got.  I was borderline losing it, ok actually losing it, trying to keep her quiet (unsuccessfully), fix the damn iPad (unsuccessfully) and was extremely frazzled.

Enter scene a very cranky older woman who was unbeknownst to me sitting two rows ahead of us, wearing a black dress, a  straw-brimmed hat, a permanent scowl, badly dyed hair and too much makeup.  She waddled back and stuck her broad face into our row.  “I just want you to know that you are making this trip a living hell for me,” she said with wide eyes and a scowl.  I was completely taken aback and so was my dad.

“I know.  I’m sorry.  But aside from placing my hand over her mouth (which side note, I did every time she screamed and had been bitten a few times), what would you like me to do about it?” I replied.

“I’d like you to discipline your child,” she said.

“Ma’am, my daughter has special needs.  She has autism (because really, that’s easier to explain than apraxia or her chromosome disorder, and honestly, I think they are all on a bigger spectrum together anyway) and there is literally nothing I can do to stop her.”

“Well I have special needs children too,” she retorted (and if she was being honest, I feel very sorry for them).  “And we all paid the same amount of money for this flight and your daughter is making it unbearable for me.”

I don’t even remember the rest of the conversation, I was so in shock that it was happening.  My dad was also sparring with her, there was more complaining about how much money she had spent on the flight, blah blah blah, but I remember telling her that I think she needed to go back to her seat, which she finally shut up and waddled back.

Immediately the man behind us stood up and leaned over to tell us that she had no right to say anything and that we were absolutely fine and not bothering them at all.  The man across the aisle smiled and gave us similar sentiments.  And then the flight attendant came over to talk to us.  I assumed she was going to tell us we needed to control our child.

“I hear you had a problem with that lady over there,” she said.

“I think she wanted to kick us off the plane,” my dad said.

“I can assure you sir, that if anyone is getting kicked off this plane, it would NOT be you,” she said with a smile.  “Are you ok?  I’m so sorry you had to go through that.  Someone is talking to her right now to let her know that her behavior was NOT acceptable.  This plane is very noisy from the engines and the people around you have all said that they weren’t bothered so she must be extra sensitive.  If you would like to press charges you can.”

I immediately burst into tears.  Like big, hysterical tears.  A combination of stress from Rory, mortification from the mean lady and complete gratitude for the grace and kindness of strangers.  Because let’s be honest…we ALL, me included, were frustrated by Rory.  Screaming children on airplanes are cliches for a reason.  But this mean lady stepped over the line.  She was not only unreasonable, she was unkind.  She showed ZERO compassion for someone who was going through an obviously difficult situation and was too wrapped up in her own personal drama to remember that it’s important to walk a mile in someone else’s shoes before you open your mouth.  ESPECIALLY if she actually did have special needs children, one would think she would have extra patience for my little girl, but she most definitely didn’t.  The nice flight attendant brought me a box of Kleenex, my dad comforted me and told me how proud he was of how I’d reacted (and told me in hindsight he wish he’d told her to go away before someone dropped a house on her, too), and Rory, seeing her mama in tears, actually had empathy and settled down.

We somehow made it through the last part of the flight until landing, at which point Rory just wanted to go to sleep because it was getting late and the Benadryl had kicked in, and I wouldn’t let her sleep because I knew it would mean there was a chance she would be awake for our 4 hour connecting flight home and was not about to let THAT happen!  So she screamed.  Literally.  Repeatedly. I clamped my hand over her mouth every time she did it, and she was so worked up that she almost threw up about five times.  It was literally the worst I have ever seen her, and it just happened to be in a large tin can full of people with no escape.  I couldn’t get off the plane quick enough, and as soon as we landed, I left my dad in charge of the car seat and carry-ons, scooped her up and stood in the aisle waiting for the door to open.  I apologized to the nice women in front of us who had endured her incessant kicking without a peep and they graciously accepted my apology with a smile.  The other people around us chimed in with a “we’ve all been there before” and “you’re doing a great job” and “we used to fly with four children and we know how hard it is.”  I was teary-eyed as I explained to them that she is special needs, and I know it was awful, and thanked them profusely for their kindness.  Then I hustled off the plane carrying my Rory, the mean lady just ahead of me.

I was greeted in the terminal by Southwest customer service.  He’d heard about the altercation and asked me to tell him what happened.  I recounted the story and he again reiterated that her behavior was unacceptable, that she was currently being chased down in the terminal by Southwest employees, and they were considering whether to let her continue on her connecting flight.  I told him I had no interest in ruining anyone’s life and just wanted it to be over.  He then presented me with three $100 Southwest credits to use on any future flight, not that I have ANY desire to fly in the next, oh 14 years or so.

We had a quick connection we had to make it to, so carrying Rory, I hustled quickly to the bathroom in the terminal before it was time for pre-boarding.  And there she was.  The mean lady was standing in the middle of the terminal talking emphatically to two Southwest employees.  I thought about passing her by, but stopped.  I marched up to her, Rory in my arms, and said, perhaps in not the nicest tone, “I hope you have a better experience on your next flight.  Good luck to you.”  She looked like she wanted to punch me as I spun around and marched into the bathroom.  While I honestly wanted to yell at her and tell her what a horrible person I thought she was for the way she had made me feel, I consciously chose to be the bigger person and not invite ANY bad karma into my life.  And let me tell you, it felt pretty darn good to know that I had only been kind in a situation where most people would not have been.

The reason I’m writing this is because neurodevelopmental disorders like apraxia and autism and sensory processing disorder are skyrocketing, we all know that. But these children occasionally have to leave home, and guess what, sometimes that means they will be in a restaurant making a fuss, having a meltdown in the middle of a store you’re shopping in, and yes, on an airplane making your life “a living hell.”  I am very selective with the places I take Rory because I know there are certain situations in which she just doesn’t do well, but guess what, I have three other kids and I don’t want to NOT take them to museums and the splash park and yep, even Disney World.  So we will be out there in the big, scary world.  Often it’s just me and all four of my kids, and I will be sweating and chasing and hovering to make sure Rory isn’t hitting other kids or causing problems while also trying to keep tabs on my 8 and 6 year old and either chasing after or wearing my 1.5 year old.

As I said earlier in this post, it is HARD to be a special needs parent.  So if you are also out there in the big scary world and you come across a family like mine (heck even a family with typical kids who are being jerks, because let’s face it, kids are jerks quite often), please look at the parents before you open their mouth.  Are they trying? Are they sweating?  Are they looking frantic and trying desperately to fix the issue?  Or maybe they are intentionally ignoring the meltdown trying to let it extinguish on its own?  Whatever the situation, that parent is probably far more stressed out than you are, and guess what?  When you leave and escape the stress, that parent will continue with it, maybe forever.  So please, have some grace.  Be like the majority of the people on the airplane who very graciously lied through their teeth and said we didn’t bother them at all.  Be like the Southwest employees who went out of their way to make us feel like we had a right to be there just like everyone else, even if we were being disruptive.  And most importantly, just be KIND.

P.S. Rory fell asleep immediately upon getting buckled into her car seat on our last flight home and with the exception of a few fussy stirs, blissfully slept the whole four hours.  So we are still 3 out of 4 for successful flights, a winning record.  And I am thankful that we only had one awful flight when I was expecting them all to be just like #3.