Traveling With Autism
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 am, 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 fourteen 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 okay, 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 okay.
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 okay, 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.
March 2, 2015 @ 12:14 pm
As always, you know just how to say what is real, with just the right amount of humor and beauty and honesty and grace. I love this one and will share with my Mom, who is trying her best to understand my son and his quirks. The licking, OH, THE LICKING! My son licks too… my cheek, the wall, and I often find little dried up clumps of chewed up paper all over the house…. he likes to eat paper, and Chapstick. I laughed so hard when you mentioned the fourteen Chapsticks! Every time I go to put on my beloved lip balm, I open it up to find teeth marks on it and half of it missing. It’s hard not to hiss from time to time, and to cry, and to laugh. And the packing – YES – one of my son’s favorite things is to pack – everything but the kitchen sink. And what an amazing packer he is, rolling each item of clothing, placing it snugly in his suitcase. He likes it so much that packs at home for fun, playing “camping” nearly every day. Thank you for sharing your days with us, and for making it all feel so perfectly ok to laugh and cry and hiss from time to time.
March 2, 2015 @ 12:27 pm
I love reading about your experiences! We took our boys to Florida a few years ago gor the first time. I was really worried about how it would go. I discovered my son with autism loves the ocean. I am so glad we went. I can’t wait to read your next post!
March 2, 2015 @ 12:30 pm
OMG….how much did I love this post!! I could relate to so much of it. I laughed, gasped and eye-rolled at your husband’s comment about the fleece (been there). Sounds like you had a fabulous time.
March 2, 2015 @ 12:39 pm
Carrie, I love all of your posts. Mostly because they bring me back to a time when all of that happened to us too. “exit, exit, exit” is not really what a crowded plane wants to hear from a screaming 3 yr old. (But he’s using his words) But we persevere. Having my family on the East Coast has made trips mandatory (not to mention my love of travel) So I adopted the attitude of….it will get better. and you know what, it has. At almost 17 he is a master of the airport. Long plane trips aren’t an issue. Though the one thing he does still say in his not so inside voice is “It’s not OK to say bomb on a plane, right?” and then he starts laughing because he is thinking of the scene from Meet the Parents…”bomb, bomb, bomb, bomb, bomb, bomb”
So thanks for sharing in your experiences and don’t forget to look back at how far you have come…because each time it will get a little better.
BTW Your last post about the cake….oh my. Flipping pancakes has never been so stress inducing…if they aren’t shaped just right…let’s not even mention a broken yolk. Why would one ever try to serve that..lol.
March 2, 2015 @ 1:10 pm
I was in the Caribbean last week also, unfortunately I didn’t see you guys. It was a well deserved break from life. This year has been hard. Our two year old son has started speech and ot, because he doesn’t speak and has sensory issues. Last month, the therapists recommended we see a developmental pediatrician. Making that appointment was very difficult for me. I want to know and I don’t want to know. I want to help our boy, but I also keep hoping “he’ll grow out of it”. A diagnosis means he will never “grow out of it”.
Thank you for this blog. I look forward to it every week. Your strength gives me hope either way.
March 2, 2015 @ 4:03 pm
He may never “grow out of it,” but you will see progress forward once he has the appropriate diagnosis. It’s really hard to fight a nameless monster. Adding a name gives you the right tools to, if not completely defeat, at least fight valiantly. I am glad you are getting help early on. His chances of being productive in the future are much better with earlier intervention. Hang in there. You are not alone! (I have a 23 yo Aspie and a 14 yo PDD-NOS. Others have survived before us. We can do it, too.)
March 4, 2015 @ 11:05 pm
Hang in there Lisa. My 6 year old son was diagnosed with PDD-NOS when he was 3, and I remember feeling exactly the same way that you are feeling right now. He also started speech and OT at that time, and many other appointments with specialists and therapists followed. He is now in kindergarten and thriving! While for years we were worried about him not talking, now he hardly stops to take a breath! The diagnosis is not an end but the beginning of a journey that will lead to great things for him.
March 2, 2015 @ 3:47 pm
Wow, Carrie…I’m so glad I stumbled onto your blog. There is something about being in the shared company of others, even though it may not be face to face, that brings peace in knowing that our spectrum kids will be ok. I was in denial with ours, until he was in 9th grade. There were a lot of separate issues, things I easily explained away and until he was a lot older, I didn’t connect it as a whole. I lost a lot of time understanding his uniqueness. My son does not like being away from home. “How much longer” was asked multiple times throughout the 10 minute trip to school. The distance never changed, but neither did his repeating mantra. And so now, as a graduating Senior I casually asked him if he’d like to take a trip to celebrate his success in completing High School. Yes! He wants to visit Ireland…to kiss the Blarney stone and sleep in a castle! So, we are making that happen this summer. Take heart in knowing this: as my son has grown, his meltdowns are less often and much more minor. He is learning to handle frustrations and becoming more patient. “How much longer” was a mantra that used to be as constant as a dripping faucet. Now, it is uttered infrequently and posed more as a true question than a frustrated whine. It is a joy to watch him grow.
March 2, 2015 @ 6:56 pm
Hello Carrie. I loved your post. I can relate to so much of it.
My son is 12 and is on the spectrum, considered low functioning because he is mostly nonverbal. I despise the term “low functioning” because I know he, like so many others on the spectrum, is very bright. We know he comprehends so much…and we love discovering his world with him.
Thank you for sharing.
March 6, 2015 @ 11:55 am
I hate that phrase, too! I feel like non-verbal kids have a higher functioning brain than the rest of us. Their internal monologue never stops, and they have to figure out all sorts of ways to deal with a difficult world.
March 2, 2015 @ 7:55 pm
My Grandson is 5 yrs old and started hitting, did Jack do this and if so how did you handle it?
Sent from my iPad
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March 2, 2015 @ 8:25 pm
Your blog gives strength to many of us Working everyday with autistic students
Thank you for your insights and laughs. It makes it all worthwhile.
March 3, 2015 @ 1:15 am
Reblogged this on oshriradhekrishnabole.
March 3, 2015 @ 9:58 pm
This is a lovely post and your son is blessed to have you and your husband as parents. You provide him with security but also allow him to head out into the world, to stretch and to grow. I have a daughter who cannot talk but who can scream bloody murder and cries so hard it breaks your heart. In my family she’s not disabled but in the world she is. What’s wrong with the world?
March 4, 2015 @ 5:02 pm
Dear Jack, It sounds like you and your family have amazing adventures. I will let you into a secret we have a book because we know our airports can be very big places with lots of people and if you want to see the amazing blue seas around the world you have to get up every earlier. So to help you and all your family please have a look at this book and some videos. This was created by a young lady whos sister also loved to travel
http://www.manchesterairport.co.uk/manweb.nsf/Content/airportbooklets
You may not use our airports but if you do I hope we will see you again soon with your golden Oreos and your pillow I never leave home without mine!
I love the way you think about the colour of the blue ocean. The ocean goes on for ever and takes you to amazing places and people.
I hope you all have a great spring thank you for your story and I hope you have many more trips abroad
March 4, 2015 @ 10:52 pm
You are spot on, again! Thank you!
March 5, 2015 @ 8:59 am
Carrie, you continue to amaze me with your wit and humor in your writing all while explaining your adventures. I have a cousin who is mostly non verbal with many ticks and outbursts much like Jack occasionally has. My aunt called the airports ahead of time to get a escort for them (he was a teenager at the time and a bit more difficult to handle than Jack). She was amazed at the compassion of the staff in helping her travel with her son, and how seamless the process went, even on the airplane. I just thought I would share, in case you or any of your readers were in need of this service. And of course, I don’t know if it is offered at every airport. 😉
March 6, 2015 @ 4:53 pm
We took our 22yr old daughter who has autism abroad for the first time last year. Your worries and concerns were so similar to ours. The most worrying thoughts and nightmares concern how someone with autism copes with another universe that is an airport with all its security, carousels, sniffer dogs and immigration officials, to say nothing of noisy airplanes. This article was beautifully written and absolutely nails the whole family dealing with the human reaction to a condition that is only gradually being understoond by everyday folk who we were once like – untouched by the mystery of autism and the issues it raises for those with the condition and the families that support it.
March 7, 2015 @ 6:58 am
“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.” So been there, so done that. Even now, as they are in the process of transitioning to independence, I devote a lot of my energy, prayer-wise and thought-wise, to keeping them safe and comfortable. They do a fairly good job of keeping themselves safe and comfortable now, but the parenting instinct doesn’t just disappear when they leave the nest.
March 10, 2015 @ 4:46 am
I’m glad he got to jump into the blue ocean
March 13, 2015 @ 10:56 pm
My first grandchild was diagnosed with autism when he was about 3 years old. For a very long time, my daughter, son-in-law and I couldn’t even speak about my grandson’s diagnosis without shedding tears. Now we share tears of pride when we look at our six year old who has worked so very hard to learn to use his words, sit still in a chair, go to the movies or a play or go to the stores with us without the worry of him running away from us. We socialize him at every opportunity because we realize how important it is for his future as an independent young man some day. His newest love is mixing ingredients! He’ll either be a baker or a scientist when he grows up! 🙂 He also wants to go in an airplane, so I’ve decided to take it small at first ,so this summer he and I are going to take a little 30 minute flight in a prop plane out of one of our local airfields. I just want him to feel that he can do anything he has a passion for…even if it’s something as small as making chicken cutlets with grandma (which he is a pro at now..LOL) or to go in an airplane or play hockey or zip line. We are all committed to showing him that he can try anything. After reading some of the comments here, I believe we all feel the same exact way and that’s truly heartwarming……
March 15, 2015 @ 3:59 am
I personally related to your comment of keeping him safe when stepping out the front door.
Parking lots were especially difficult to maneuver about in with my son. Eventually, my Andrew would learn to look before crossing the street. And now he drives himself to college.
He is performing with his college choir at Carnegie Hall next month. There are so many obstacles that he has overcome, yet I’m never surprised to learn of new challenges.
As his mom, I’m his biggest cheerleader. I understand his strengths and weaknesses and love him unconditionally no matter what.
Thanks again for sharing your story.
May 16, 2015 @ 1:34 am
Thank you for this. The moment I read ” really? We are going to worry about this right now?” I cried and laughed. You quoted me. My husband and I have these moments often while traveling or just dealing with every day life. I agree, our kids are always flexing, always trying, working so hard. It would be nice if those around us flexed a tiny bit…would make this journey a little easier.