The Hardest Part About Traveling With Autism

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Last winter my husband Joe and I took five red suitcases, four messy boys and one pink girl on a Caribbean vacation. As soon as our second son, Jack, climbed into the shuttle to the airport, he made an announcement to the driver: “None of us. Smoke tobacco.”

The driver looked back at me in the dim light of the van. It was 3:30 a.m., and I imagine this was not the sort of conversation he expected to have with a 10-year old.

I smiled weakly. “Uh, he’s right. None of us — we don’t use tobacco.”

Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean. You just keep your fingers crossed that he can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns and anxiety.

Right this minute, Jack is obsessed with Oreos, something called a Bamboozle challenge, all of Disney’s evil characters, and, because of fifth-grade health class, the dangers of tobacco.

Oh, and lately he licks things, like public signs and handrails and my jacket sleeve and once in a while, the walls. I have no idea why.

So, as you can imagine, between the licking and the tantrums and the tobacco, a trip with Jack can be all sorts of crazy fun. But he actually loves to travel. He loves to see new places and figure out the best way to get there. He loves to try and guess just how blue the water is in the Caribbean.

“Blue. How blue is the ocean. Tell me now how blue.”

That is, he loves to travel as long as we let him pack his 14 Chapsticks and his beloved stuffed bunny and his pillow with the license plates printed on it and countless other useless items. For this trip, we had to talk him out of packing his humidifier. Basically, he needs to bring his inside world whenever he ventures outside. This is what makes him comfortable.

We got to the airport around 4:30 in the morning. Joe and I exchanged uneasy glances when we saw how crowded it was and the long line to check in for the flight.

As we moved our luggage and made our way onto the line, Jack fell. He began to scream the loudest, rawest, most guttural scream, and a hush fell over the entire terminal. Hundreds of people watched as Joe and I tried to soothe our flapping, flailing son.

“Jack, ssshhh, it’s OK, calm down.”

“Hurt hurt hurt HURT!”

Joe looked stricken, and I felt my own face burn.

I glanced over towards the crowd of people waiting on line and staring, and in that muted space and time, I realized the hardest part of traveling with Jack.

It’s not the tantrums or his mouth on my jacket or the obsessive questions about the flight schedule. Rather, it’s explaining him. There is so much I want people to understand about him, about us, about the spectrum disorder. So, if you are ever in an airport or on a shuttle or a bus or a train, and you see five red suitcases, four messy boys and one pink girl, this is what I’d like you to know.

Our son Jack has autism. He has trouble regulating himself, especially if he’s hurt or scared or confused. This means he screams sometimes, which can be a little jarring because he’s a giant 10-year old boy with the voice of a toddler.

But from the moment we step out of our front door, I am devoting every ounce of my energy into keeping him safe and comfortable. I am trying to make sure he doesn’t wander away from me or step on your toes or kick your seat or cut you in line. At some point, you may overhear my husband and I argue, because traveling with autism is very stressful business.

“Carrie, he needs to wear his fleece, it’s freezing in here.”

“Oh, really? We’re going to worry about that right now? You know he’s going to freak out.”

When I am not hissing at Jack to keep his tongue off the counter or assuring him our flight is on time and that we will try very hard to get him a window seat, I am looking at all the people around me. I am doing my best to anticipate his questions and comments and loud, booming observations about your wig or your skin or your hat or your baby.

I am trying to help him flex and bend and learn and grow; to see that many people are small while others are tall, there is dark and light and wide and narrow. Some even smoke tobacco, and that is OK. At the same time, I am hoping those around me may flex and bend and learn and grow; to see that some boys hop and lick and shout and fall. Some boys have autism. And that is OK, too.

Every day, I fight for his place in this world. And every day, I fight for your place in his world.

You can ask me anything. Please, ask me anything. Ask about spectrum disorder and stimming and medication and early intervention. I will tell you everything I know. You can ask Jack anything. He may not answer you, but if you really want to get a conversation going, casually mention that you think Golden Oreos are the best kind.

See, in our house, autism is not a secret. It is not a buzzword or a vague, underground rumor. It is true and vibrant and powerful. It is living within my son.

Trying to describe Jack’s autism to someone who doesn’t know him is like trying to describe the bluest ocean to a person who doesn’t see. It is deep and sparkling and brilliant and alive. It is slippery and quiet, but it can also be deafening. It likes to make waves. It’s not something you can hold in the palm of your hand, and yet all at once it surrounds you. It can take your breath away.

We are a family traveling with autism, and we are messy and loud and real. We are imperfect, yet unbroken. But please, don’t feel bad for us. Promise me you won’t shake your head or sigh or murmur about how it isn’t fair.

You see, for the longest time, fair was lost to us. In fact, we stopped looking for it altogether. But then we found it again. We found fairness and justice and truth in our boy. He is unexpected and earnest. He is delightful and strong.

In so many ways, he is just like you and me; he wants nothing more than a seat by the window and as many Oreos as he can eat. He longs to be understood. He wants people to stop smoking because it is bad for them, and for everyone around him to know he hurt his knee when he fell on the floor.

“I hurted my knee so bad. That’s how I screamed.”

And after an early morning ride on a shuttle and a fall in the airport and a very long trip on a plane, he wants to take a deep breath, close his eyes and jump as high as he can into the dazzling blue waters of the Caribbean ocean.

traveling with son with autism

This post originally appeared on Carrie Cariello’s site.

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Dear Mom Who Was Kicked Off the United Airlines Flight

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Dear Momma,

I am so, so sorry.

I understand, 100 percent, how this happened. I fly frequently with my son, and frequently, I have to manage meltdowns — in the airport, waiting for the plane to take off, mid-flight, and while we wait for the crowd to deplane.

I know it was already stressful.

I know the flight attendant, not understanding how critical that hot meal was, must have made you feel a panic only a momma of child on the brink of a meltdown can understand.

I can only imagine the shame and indignation, mixed with fear and a whole lotta anger that came along with the emergency landing and a police escort from the plane — even though your daughter was already calm, and you thought you were on track to Just. Get. Home.

Woman being interviewed on the news.
Photo source: KOIN

I have often wondered how long it will be before we are escorted from a flight. We fly frequently due to our custody agreement, and it is always stressful.

My son, as he gets older, could potentially do some harm, I think. The truth is, it would likely be to himself or me, but the potential is still there.

I am not even sure what I would expect the airline to do in a situation where my son becomes out of control.

I am writing this to you, however, not because of what happened.

I am writing this because I am reading the responses to the articles circulating about you, and my heart is breaking.

On one side, you have moms just like me, saying this is “terrible,” “awful” and “that poor woman.”

On the other side, though, there is a much larger, much louder group, saying “You should’ve.”

You should’ve known better.”

“You should’ve made arrangements ahead of time with the airline for a hot meal.”

“You should’ve brought food on the flight and kept it warm.”

“You should’ve taken a train.”

“You should’ve planned ahead.”

“You should’ve…”

I think this is exactly what you were thinking, prior to asking the attendant for help. We always blame ourselves. In the 24/7 reality that is autism, we are accustomed to the demands of always being one step ahead, always anticipating, always planning, always trying to avoid what is just sometimes inevitable.

I want to say this as LOUD AS I POSSIBLY CAN…

You were on your way back from a family vacation. You deserve a medal for even trying to attempt that. I hope it was amazing!

You were encountering a significant, three-hour time change. We can barely handle Daylight Savings around here. If your daughter is anything like my son, the time changes mean all bets are off as far as anticipating eating habits and behavior.

Maybe you ate right before the flight and thought you could make it to your destination without another meal.

Maybe you were up half the night — because autism doesn’t sleep well in unfamiliar surroundings — and just didn’t think it through.

Maybe you were just plain done — like every mom I have every known, autism or not — who is headed home with her children after a family vacation.

No matter what, please know this: no meltdown is ever, ever your fault, and this one is no exception.

We do the best we can, and sometimes, it is just not enough to avoid the meltdown.

No matter what, you are not alone. There are mommas all over reading your story and cringing because we know it could just as easily be us.

Thank you for speaking up.

Thank you for not being silenced by the shame, and the feelings of failure.

Thank you for sharing a difficult, but important reality for so many of us.

I am so glad you did.

And I will be championing you all the way.

Love, Shawna (on behalf of my son and me!)

Woman smiling, touching her son's hair.

Related Story: Police Escort Teen With Autism and Her Family Off a Plane

This post originally appeared on Not the Former Things.

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Police Escort Teen With Autism and Her Family Off a Plane

On May 5, Donna Beegle and her husband, son and daughter were on a flight home. They were returning to Tigard, Oregon, after a vacation at Disney World in Orlando, Florida. The family had flown from Orlando to Houston, Texas, where they caught a United Airlines connecting flight into Portland, Oregon, KOIN reported.

About an hour into their second flight, Beegle noticed her 15-year-old daughter, Juliette, seemed uncomfortable. Juliette has nonverbal autism and Beegle said she could quickly tell Juliette’s frustration meant she was hungry. When she asked a flight attendant if she could purchase her daughter a hot meal from first class, she was told she could not. She explained her daughter’s needs and said Juliette could have a meltdown if she couldn’t eat something. At that point, Juliette received a meal and quickly relaxed again.

Half an hour later, Juliette was watching a video in her window seat when an overhead announcement told the passengers they were making an emergency landing in Salt Lake City due to a passenger with “behavior issues,” ABC News reported. Paramedics boarded the plane and asked Beegle if everything was OK. Quickly thereafter, police officers came onboard and told the family they had to exit the plane.

Police officers escort Juliette and her family off the plan in the video below, taken by a passenger:

The officers told Beegle the captain had said he was uncomfortable continuing the flight with Juliette onboard, ABC reported. Beegle then stood up and asked if anyone on the plane felt threatened by her daughter, and no one indicated that they did. Jodi Smith, another passenger on the plane who was sitting three rows behind Beegle and her family, says she thought the situation did not merit an emergency landing.

“That was just ridiculous… she was calm, she had done nothing,” Smith told ABC News. “That was the epitome of discrimination. I have never in all my years of flying seen anything like this.”

When KOIN reached out to United Airlines for comment, a spokesperson issued the following statement:

After working to accommodate Dr. Beegle and her daughter during the flight, the crew made the best decision for the safety and comfort of all of our customers and elected to divert to Salt Lake City after the situation became disruptive. We rebooked the customers on a different carrier, and the flight continued to Portland.

Beegle told KOIN she believes her family was asked to leave the plane because of “a fear of autism.” She contacted a lawyer and intends to file a lawsuit.

“I get the ignorance,” she told KOIN in the video below, “but it has to change.”

Learn more about the family’s story in the video below.

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20 Things I've Learned Since My Son's Autism Diagnosis

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1. A lack of sleep makes everything seem worse than it actually is.

2. It is possible for one person to talk for four hours straight about snakes, or aquariums, or cats. Trust me.

3. People can be really, really mean.

4. People can be really, really kind.

5. Just when I think I can’t do another day, my son does something amazing and changes my entire perspective.

6. Sometimes doctors know exactly what we need. Sometimes they don’t. Either way, only go to a doctor that sees you as a valuable partner in your child’s health and progress.

7. My son’s abilities are far more impressive than I ever dreamed possible. I have been stunned more times than I can count. Like when I realized that he has, without even really trying, learned the scientific name for every single fish at the aquarium and every single plant at the gardens. It’s like glimpsing something sacred, something completely beyond me.

8. There is a reason for the behavior. There is always a reason for the behavior (and that reason has never once been to just annoy me).

9. Stimming is a thing. I had no idea.

10. Fixations serve a purpose. They are a valuable way for our children to connect with the world. And, our kids are often wicked smart because of them.

11. Most of my grief is my own, not my son’s. Letting go of all the expectations I have about being his mother is one of the most difficult parts of all of this. My son does not share these expectations – not even a little. So the problem most often is me. Not him.

12. Pick your battles. I will say it again. Pick. Your. Battles. I try to just work on one thing at a time, until it is a habit, and then move on to the next. Trying to do all the things at the same time does not help anyone, and just causes stress for every single person in our house.

13. Being a student of my child has helped me learn more than any book, therapist or website. Differences in brain function can be really hard to understand for the neuro-typical momma. The more I pay attention to how my son thinks and responds, the more I begin to understand.

14. Autism makes my life weird sometimes. For example, I found myself in an aquarium store every single day last week. Every single day, for at least an hour a visit. It feels like a bizarre way to spend our time, but this is us, living our life well.

15. You will figure out the unique things that work for your child. Lycra sheets work for mine. A quiet space, with lots of blankets in the closet, works for another little girl I know. You will find things that help, even when it feels like nothing can.

16. You will never feel like you are doing it completely right.

17. You will have days where it feels completely natural.

18. Other mommas are like a fresh drink of water. Find them, either in person or online. Ask them questions. Let them assure you that you are not the only one.

19. Prayer is always answered. Maybe not in the way I thought it would be, but prayer is always answered.

20. The way may feel when you first hear the word “autism” associated with your baby is awful. But I have learned that there is good and bad, beauty and ugliness, joy and messiness – all wrapped up in that one little word. If I have learned anything, it is to make peace with it. My son would not be my son without it. And I love my son. Exactly as he is – including the one little word that has completely changed our lives.

Autism.

I never thought it possible, but somehow, rather than fighting it, I have learned to welcome it. I have learned to know it.

And I have even learned to embrace it.

What would you add to this list?

boy sitting in doctor office

 

This post originally appeared on Not the Former Things.

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When My Dates Would Ask Why I Teach 'Those' Kids

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When I started dating again after my divorce, one question could ensure no second date.

Why do you teach those kids?

To be fair to the guys, it’s a legitimate question to ask when your date walks in with a limp and a giant bruise and explains that there was a substitute teaching assistant today who didn’t know we don’t sing the morning song and in trying to protect the substitute, she ended up with a limp and a bruise.

It wasn’t the question I had the problem with. I had a problem with the way it was asked. Those kids. You know the ones. The behavior ones. The ones with autism. The ones who get mad and hit because a person accidently messed up their morning routine. Why do you teach those kids? Said as if there was a problem with the kids and me in turn for teaching them.

I’d sigh. Sip my water. Wait for my friend to call and tell me that I had some vague emergency. I’d apologize and leave.

Once, I made it all the way to a sixth date with a guy when he announced that he wouldn’t let his wife teach those kids. At this point in the date, my car had a flat, my cat needed to go to the emergency vet and I think my grandmother was coming down with something. I really need to go check on her, sorry.

When I was done with dating in general, my teaching assistant said I should go on just one more date. Promise, she said. I have a really good feeling about this guy, she said. So after several days of texting, he asked me out.

“Why did you choose to teach those kids?” he asked, showing me a picture of his son. His son is disabled. He was not asking why those kids. He was asking me about why I made that choice.

So I said:

I get to hear kids labeled “nonverbal” speak words for the first time.

I’m there when they finally make eye contact and spontaneously request Goldfish.

I feel complete and total joy when one of my students says hi and interacts with another student in the hallway.

And the feeling you get when your student is finally, completely and totally potty-trained, well nothing tops that.

He smiled at me. And I smiled at him. We’ve been together ever since.

Fast forward a few years and I’d moved from an elementary autism unit to a secondary one. The kids were bigger than me. The kids were stronger than me. I did not know if I could teach those kids, and I was mad at myself for thinking it. I came home upset and crying after a particularly hard day.

He looked at me and said, “Why do you teach those kids?”

I answered, “Because if I don’t do it then someone else is doing it, and I cannot bear to think of someone who doesn’t love them as much as I do being with them.”

Then he said, “And if I told you to just quit, that we’ll be OK. What would you do?”

“Work with kids with disabilities,” I said. “I’ve never wanted to do anything else.”

“And so,” he said, “why do you teach those kids?”

“Because I love them,” I answered. “Because this was one bad day and one bad day does not a year make.”

He hugged me and said, “You better suck it up, Buttercup. Sounds to me like you’re the perfect person for those kids.”

I smiled.

Autism is always teaching me lessons about myself and life. We’re all worthy and sometimes we just need to find the person willing to talk us through the meltdown. 

I teach those kids because for them, I am their person. 

The author with her family

The Mighty wants to read more stories about dating, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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With Just 2 Words, My Son With Autism Let Me Know We’d Be OK

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I remember my son TJ was still 2.

He’d been diagnosed with autism a few months before this day. He only said “Ba” for ball, “Da” for dog and “Ma” for no.

He was immersed in so many different therapies and programs — most of them taking place in our home.

I remember I was tired.

My son Peter was 1. I remember how I wanted to go for walks, to playgroups, to Mommy and Me classes. But I couldn’t. Our entire day was scheduled around these therapies.

I remember I was playing with Peter in the living room. TJ was upstairs in his room with Diana, our first Discreet Trial teacher. It’s a one-on-one therapy away from distractions where the teachers use a reward system to teach things like emotions, colors, letters — everything. Parents were not to be present during their work. I listened through the baby monitor so I was in touch with what he was working on.

I remember being busy with Peter that day, and I wasn’t being my super stealthy listening self. We were playing and giggling when TJ and Diana came down the stairs.

“Mom, TJ has something to say to you…”

Wha… what? My heart stopped. Something to say?

“Hi, Mom,” TJ said simply, with a smile.

Even today when I remember this moment, I’m overcome. Overcome with pride, with surprise, with joy.

Overcome with hope.

Now my TJ is 15, and Peter is 13. TJ talks all day, every day. We have many more good days than bad, for which I am so thankful.

But every now and then, if I get a case of poor me or if we’re having a tough day, I remember those two little words that gave me so, so much hope:

“Hi, Mom.”

Happy Mother’s Day to all of you.  I hope your day is filled with love, with joy, with surprise.

And with hope.

laurenjordan

This post originally appeared on I Don’t Have a Job.

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