15 minute read
Traveling with kids is not a walk in the park, unless you are actually at a park, walking. Add in a diaper rash, a missed nap, or a complete meltdown, and the excursion becomes much more difficult. Yet for families with children who have any type of physical or cognitive delays, the challenge of traveling beyond your home is far greater.
A good sense of humor is an important item to pack.
Over the years, we’ve learned a lot about travel. We’ve also learned a lot about Autism Spectrum Disorder (ASD). Both subjects are linked, which makes it important for parents to understand both. For those of us who are neurotypical, standard daily activities may only require a little planning. But for those with ASD, careful planning is a base necessity. In many ways, these people are explorers, charting courses into environments which are completely foreign to them. Sensitivity to environmental effects can misdirect and confuse. Wayfaring through unfamiliar people and places is a big deal, and can adversely affect the explorer’s mood and ability to process information.
A good sense of humor is an important item to pack.
“We were convinced that the 12-hour flight from AKL to SFO was going to be real challenge. To occupy our two year old son, the internet suggested that we take enough toys to switch out every fifteen minutes. We’d packed a small backpack full of familiar toys and somehow gotten it through airport security. There was enough paraphernalia in there to build a musical instrument inspired by Dr. Seuss and I expected nothing less from our little inventor. As soon as we arrived at our gate, I placed the overloaded backpack onto his shoulders. In full view of our fellow passengers, the little guy promptly tipped over backwards and laid there like a confused turtle. Everyone laughed, including us.”
This is what it’s like to travel with a young child with ASD. It takes a lot of planning and the best of intentions, only to be quickly undone by a ridiculous event. All you can do is laugh and move on.
Our Family, Our Story
We are a family who loves to travel. I am an American who met and married an amazing woman from New Zealand after knowing her for only four months. Eleven years of marriage and four children later, we continue to look for any opportunity to get away and experience new places. Whether its taking a last minute trip to Beijing or carefully considering our next local day trip, we jump at the chance to get out of the house. But it wasn’t always like this.
“Visiting Muir Woods – north of San Francisco – was an inspiring trip for all of us. Never before had any of us seen the great redwoods of California at close range. The textures and smells were incredible. We drank it all in as the afternoon sun filtered down through those towering trees.
Our son was nearly two years old and very mobile. He sprinted up and down the path, chirping at the redwoods and staring into the sky above, through layers and layers of leaves. Our daughter was tightly packed in a carrier strapped to my chest. Her sleeping sighs and deep breaths were a marked contrast to our son, who was beside himself with glee.
As I watched him run circles around other visitors, I noticed that he stopped to touch everything in sight, as if taking haptic inventory of the world before him. Every few steps he would stop, look up and point, uttering a deep “wooo,” before returning to his explorations. There was an interesting rhythm to his movement that seemed too methodical for a kid his age. It was the textures that excited him the most, but also the light and shadow and the great scale of the forest. It was a magic he really hadn’t encountered yet. His little frame responded in an almost animalistic manner – a frantic array of wonder and joy.”
It was in Muir Woods that I first noticed the difference between our son and other children his own age. While his contemporaries walked the line between excitement and imitation of those around them, our son was completely enveloped by impulsive behaviors. He was bottled lightning – a nonstop blur of confusion and mayhem. Sometimes it was fascinating. Sometimes it was worrisome.
We needed answers.
Like any parents would, we wanted to know exactly what made our child tick. After several rounds of testing and observation, our son was diagnosed with ASD when he was three years old. Genetic testing indicated he had an extra Y Chromosome. This is referred to as Fragile X or Martin-Bell syndrome and is what causes the delay in some of his cognitive abilities. It is a rare condition, with only 200,000 cases diagnosed in the United States, annually, and cannot be cured.
A further diagnosis of Attention Hyper-Active Disorder (ADHD) has compounded his challenges – his need to focus on small details is constantly usurped by impulsive and unpredictable behavior. Thankfully, our son qualified to begin a Special Pre-Kindergarten program at the same time, which we hoped would mitigate his behavioral and educational needs. Now six years old, he is integrated into a kindergarten program with students of many different neurological capacities.
None of this is easy.
Managing our son’s needs can feel like a full-time job. It is thankless, difficult, and exhausting. It is very easy for parents to feel like life is on pause while simply surviving this season of life. But for us, our family’s love of travel and exploring new places was an important activity to hold on to, despite always feeling overwhelmed.
Autism Quick Facts
If you have a child on the spectrum, know someone on the spectrum, or simply want to learn more, Autism Speaks is a great place to start. This nationally recognized non-profit organization is dedicated to promoting solutions through advocacy and support. Additionally, they seek to increase ASD understanding and acceptance.
“If you know a person with Autism, you know one person with Autism.”
You can learn more about the Quick Facts below through Autism Speaks:
- People on the spectrum may struggle with typical social and communication skills. Communication skills include spoken language, gestures, eye contact, facial expressions, and vocal tone.
- People on the spectrum will often succumb to repetitive behaviors. Repetitive behaviors include body movement, motions with objects, fascination with spinning objects, ritualistic behaviors, concentrated interests in specific topics, and a need for routine.
- Symptoms of ASD begin in early childhood (though they may not be diagnosed, yet). Symptoms continue throughout the individual’s life, affecting daily life. There is no cure for the disorder, though many individuals benefit from medication, diet, and therapy to address behavioral responses to their environment.
- People on the spectrum may have sensory issues, which includes both over-stimulation or under-stimulation to sounds, lights, touch, tastes, smells, and pain, among others.
- Autism spectrum disorder is often related to other physical and mental health conditions.
- People on the spectrum may struggle with understanding emotions, both in themselves and in others. This may cause them to feel overwhelmed in social situations, where taking turns in conversation and understanding appropriate personal space are important.
But the most important characteristic of the disorder is that there is no single type of ASD.
Autism is a spectrum. Each person on the spectrum will have different strengths and weaknesses. Remember the saying, “If you know a person with Autism, you know one person with Autism,” meaning, no two people living with ASD are the same.
Parenting a Child on the Spectrum
Welcoming any child into your life is a series of hits and misses. You try different things, hoping to find success and joy for everyone in the family. Some attempts go well, like our vacation to Rarotonga and Aitutaki when our son was only seven months. Other attempts crash and burn, like watching 4th of July fireworks in Maryland. You have to keep trying, knowing that eventually you’ll have more wins than losses.
Please understand that your responses are completely normal. Not perfect, just normal.
Being a parent of a child with ASD can affect you in a variety of ways. In our family, my wife and I respond very differently when we are traveling with our children and spending time in public places. Embarrassment, fear & anxiety, anger, distrust of strangers, a heightened sense of public appropriateness – all of these are normal responses, as well as many I have not mentioned. Please understand that your responses are completely normal. Not perfect, just normal.
20 Travel Strategies For Children With ASD
The best way to combat your negative reactions to your child’s disability from a traveler’s perspective is to develop better travel strategies. If your child struggles with typical environmental situations, it is a good idea to create situations to mitigate non-typical social situations and keep your child safe.
1. Introduce the Staff
If your child has difficulty around unfamiliar people, or has limited language, don’t be afraid to introduce a member of staff to your child using their job description. These descriptions could also help your child identify staff that can help them if they get lost. These types of continued social interactions are a good way to build upon language and social skills while in a foreign environment.
2. Personal Identification
This can be as detailed as you want. At a minimum, many people recommended that you include their name, their diagnosis, and your mobile number. You may even wish to include a vague travel description. This could be placed on a lanyard that hangs loosely around your child’s neck. It could also be pinned or adhered to the back of their shirt. There are several professional products available, such as The Autism ID Card, which “helps people with ASD explain their medical condition to police, EMTs, and other first responders in the event of an emergency.”
If visible personal identification seems like a risk, there are other options, such as Project Lifesaver. This service “is a community based, public safety, non-profit organization that provides law enforcement, fire/rescue, and caregivers with a program designed to protect, and when necessary, quickly locate individuals with cognitive disorders who are prone to the life threatening behavior of wandering.” Project Lifesaver features wearable technology which police, fire, and rescue departments can use to quickly locate your child.
Autism Speaks lists a bunch of other products and services for protecting and location at-risk individuals. Follow the link to learn more.
3. Goodie Bags
If you are traveling in close quarters with other people, consider preparing some goodie bags for passengers in your immediate vicinity. Include a short note and some sealed candy. Help your child pass these out; they will meet the people nearest to them and your fellow passengers are less likely to respond poorly if a meltdown occurs.
4. Travel Preparation
It may be essential for your child to retain as much routine as possible in their daily lives. Yet traveling in any capacity challenges this concept and can quickly create a situation of confusion and discomfort for your child.
For parents of older children, you may find success in discussing your travel plans in growing detail. Begin months in advance with small details, then continually expand on the details, using images, videos, books, and maps to explain the process. For parents of younger children, add travel-based toys and stories into your daily routine. Use the “First-Then” clause, as in “First go to airport, then eat snack.”
5. A Favorite Travel Item
An object may become part of the narrative, such as a toy airplane. Allow your child to hang onto this object and then take it with them during your trip. Once a favorite object is identified, purchase several of the same items and pack them in different parts of the luggage in case they lose it along the journey. By mixing a familiar item into unfamiliar surroundings, there is potential for your child to self-soothe when anxious.
6. Travel Simulation
This is a good way to make traveling part of the routine and to address a fear of unknown places. For example, if you are taking a flight across the country, you may experiment with ways to simulate parts of a 5-hour flight. Acclimate your child to sitting in one place with a media device full of their favorite shows, movies, books, and games. Add in a series of routines that mimic the real thing. This may be taking their shoes off at airport security or using a small restroom on the plane. If you are going to be staying at a hotel, it may be a good idea to spend a night at a local hotel a week before you depart. Use a familiar item, like a blanket from home, to connect your child to familiar surroundings.
7. Overpack Medication
When you are away from home, you don’t want to be short on their medication, especially in the event that your traveling duration is extended by a crazy snow storm or an attack by Godzilla. Either pack more medication than you expect your child to use or know where to find it at your destination. This includes any dietary supplements.
8. Supplementing Diet
If you have taken steps to regulate your child’s behavior through their diet, like eliminating Red 40 (a food dye) from their food, you will want to plan ahead and have a clear picture of what food awaits at your destination. I recommend contacting your airline with dietary requests, as well as working with your hotel’s concierge. There may be local food substitutions that will work in a pinch. Many countries around the globe are not as aware of autism as the United States, so plan accordingly.
9. Positive Reinforcement
If your child is in therapy, it is likely that they are using some form of positive reinforcement. Be generous with positive reinforcement immediately after your child completes a non-typical task, like using a toilet outside of home and school. Use a favorite treat or activity to teach new behaviors and reward consistency. You could also use visual aids, like a laminated schedule of events with pictures. After each event is completed, provide your child with a reward.
10. Noise-Cancelling Headphones
Introduce noise-cancelling headphones well before you depart. These can be connected to a tablet loaded with favorite games, movies, shows, and books. These can also be used in conjunction with some soothing white noise or calming music. Experiment at home.
11. Don’t be Afraid to Get Weird
If your child uses any objects to mitigate their responses to sensory-overloaded environments, then bring these along and keep them close at hand at all times. This may include dark sunglasses, mittens/gloves, a blanket, or a hat. Contact all methods of planned transportation, especially your airlines, to ensure that you can bring these items with you. If an item is restricted, start substituting another item before leaving home. For example, if your child wears a mask on car rides, try introducing a baseball cap for your impending flight.
12. Use Candy
Candy is a great treat because it can combat strange smells and tastes that your child cannot handle. It is also capable of helping children to avoid their ears popping once a plane takes off.
13. Know Your Limits
Even if your child has not been diagnosed with anything other than autism, please know that there is the potential for additional symptoms. When planning your trip, ask yourself, “If everything goes wrong and their is a real medical emergency, where will my child receive care?” This may mean that you seriously consider the infrastructure of your destination.
14. Schedule a Preemptive Doctor’s Appointment
Before you depart, schedule a Doctor’s appointment for your child. It’s better to know and cancel your plans, then arrive at a destination and be miserable.
15. Buy Travel Insurance, Every Time
Do not leave home without purchasing travel insurance. If you cannot afford it, you shouldn’t be traveling until you can afford it. Parents of children on the spectrum have a far greater risk of complications happening anywhere – at home, at school, and yes, even on vacation.
16. Swimming Lessons
If you are planning on traveling somewhere that has a swimming pool, and waterpark, or a swimmable shorepoint, make sure your children can swim. It is very common for autistic children to become overwhelmed in social situations, which can result in wandering off or bolting away from the group. According to Autism Speaks, drowning accounts for 90% of all deaths that occur with wandering or bolting children.
17. Hire an Assistant
Bring along an extra pair of hands if you think you may be overwhelmed. This may be a family member, your Au Pair, or a close friend. There may even be services at your destination to help with this.
18. Use Third Party Services
There are many companies and organizations around the country who are helping children with ASD travel better. Notable standouts are the Blue Horizons for Autism by JetBlue, the travel agents for ASD Vacations, Royal Caribbean’s Autism-Friendly Ships, and Autism Awareness Days at various theme parks. For many years, Disney has always been a leader in cognitive disability services at their parks and on their cruises.
19. Be Okay With Bailing
If you’ve scheduled an activity for your family, you may arrive and realize that it is beyond you or your child’s capacity. It is okay to cancel last minute. Don’t worry about the money or what the operators are going to think of you. You know your child and you get to make the final call on whether or not you follow through.
20. Frequent Travel
Find any excuse to travel beyond your hometown. These experiences may help your child learn to accept new experiences, people, and places.
In Our Experience… Travel is Always Worth It!
The effects of travel on most people is one full of positive experiences and fun stories that enrich their mind and body. But for children with ASD, it is often assumed that they are struggling through a world they could never understand, and that traveling out of their comfort zones is not only a difficult task for their parents, but a waste of time.
Parents of low-functioning autistic children are likely to be the toughest to convince of the benefits of travel. This may be due to an expectation that travel must be defined by several expensive weeks sojourning in distant and exotic lands. Yet travel allows new experiences to reshape, reorder, and reconnect our brains. It can be a short day trip to the neighboring county or a long weekend in the major city in your region. Any time you go somewhere new, that is the act of travel.
An important lesson for us has been to actively insert travel into our weekly routine. It is usually a family day trip somewhere in the Maryland-Viginia-DC area, but it serves a greater purpose than our humble plans would suggest. Our son craves routine, yet the more time we spend traveling, the more adept he becomes at participating out of sequence with his normal weekly activities. By including travel into his routine, we can now stretch him into new territory. Our goal is always longer trips to more sensory-rich locations.
Additionally, our son’s limited use of language gets stretched beyond his limits when we recount our experiences. Our bedtime routine often includes looking at photos of our recent trips. This mechanism helps him to learn new words and phrases. It also expands his mind and helps us bond as a family.
At the end of the day, my wife and I will find a quiet moment together – she’ll turn to me and say, “I had fun today.” In our experience, travel is always worth it. ◊
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