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Autism Hits The Road

When it comes to ASD family travel, preparation is key…

My fondest childhood memories are those of summer vacations taken with my family. One trip in particular stands out in my mind—a road trip to Yellowstone National Park. The whole family piled into a 1960 Pontiac Station Wagon and headed for the open road. We travelled over 3,000 miles with no air conditioning, no seatbelts, no reservations, and no autism.

We converted a shoeshine box to hold maps for all the states we would traverse, and I’d sit on the box in the center of the front bench seat between my parents to navigate—I don’t even recall a time when I couldn’t read a map. When Dad got tired, we’d search for vacancy signs at small motels along the way, my parents hoping for a cheap room and the kids all hoping for a pool.

There were no iPods, no video games, and no movies. For entertainment, we’d sing 99 Bottles of Beer on the Wall, before it was politically incorrect for children to do so. Every five miles, or an estimated 600 times, we asked, “Are we there yet?” As an adult, I’ve often wondered what prevented my mother from opening the door at 75 miles per hour and bailing out. I also find myself, like many of you, wondering how to plan a family vacation where the urge to bail out won’t overcome me. Certainly, having two kids with autism—one with Asperger’s Syndrome (AS) and my youngest with autistic disorder—has taught me that the adage, “If you fail to prepare, prepare to fail,” is particularly true with travel planning.

Managing Expectations

The first and most critical question to ask is if you should even take a vacation. The urge to stay home can be strong if you have a child that gets easily frustrated or upset when normal routines are disrupted. If you take away nothing else from this article, I hope you get this: I believe firmly that children with autism need to experience many things, even if they are hard to do. Travel is a great opportunity to learn new skills, see the world and make new neural connections as the novel experiences rack up. It’s critical for all of us to experience life beyond our four walls, beyond our community, and, I believe, beyond our own country if possible, to develop a greater understanding of our world and one another. If we shield our children from the world, and the world from our children, where will they belong as adults?

That said, chances are there will be bumps “on the road.” At times when we’ve travelled together, my son would have more challenges with his autism than in the predictable comfort of home, appearing to shut down due to the barrage of sheer newness. But, after we returned home and all settled down, that’s also when we saw the greatest developmental leaps. I’ve found nothing compares to travel when it comes to teaching my son to be flexible and expand his coping skills, which is probably more vital to his future success than how he is doing on his math IEP goals. Although new experiences can be challenging for him, my little guy also craves novelty and is a sponge, even when that’s not apparent.

The first time I sent my oldest son with AS to Boy Scout camp, we sat down and talked about expectations. “Some of it is going to be great fun,” I said, pointing out swimming, camp fires and other fun activities planned. “Some of it will suck,” I continued, “and the rest will be neutral. But, at the end of the trip you will look back and be glad you went.” At the time, that statement was made on faith but I’ve found it holds true and serves as a good reminder for the whole family (myself included) before each trip.

Where to go?

Over the years, I’ve learned to be realistic and consider what we’re most likely to enjoy together. When Andrew was very young, waiting in line was almost impossible—so a trip centered on museums or attractions with long lines would have been miserable. During that time, beach vacations that were unstructured and relaxing were best. My son was a swimmer, though, and not a runner—for some parents of children with autism, a vacation centered on water would be anxiety-ridden and unsafe.

It’s a good idea to join online parent support groups and ask families what they’ve enjoyed doing (you might learn of a destination that hadn’t even occurred to you). Use your social networks to ask for advice—you can get great tips on travelling on a budget, accommodating dietary restrictions while on the road, and myriad other details that will make your trip more enjoyable. From camping, to cruises, to amusement parks, urban vacations and family visits, there’s usually a destination that fits your family’s unique needs and budget, and it’s likely you have a contact who can help you understand your options at that destination.

Without a doubt, the vacation destination most autism parents recommend to me is Walt Disney World Resort (see Doing Disney). Guest assistance cards are available for people with disabilities, including autism, which can make your trip much more enjoyable. You must obtain a card from the Guest Relations office at each park you visit, and it’s recommended you bring a letter from a healthcare professional verifying your child’s diagnosis. The pass can reduce wait times for rides and other attractions.

Another stand-out in autism friendly vacations is the TradeWinds Islands Resort on St. Pete Beach, near Tampa, Florida. Decidedly more laid back than busy theme parks, this property is on a beautiful quiet stretch of beach, and its owners consulted the Center for Autism and Related Disorders (CARD), located at the University of South Florida in Tampa, to provide special training for hotel staff to better understand autism. Two other Tampa area hotels, the Wyndham Tampa Westshore and the Crowne Plaza Tampa Westshore, have also provided staff training.

If you’ve dreamed of a cruise but have been concerned it would simply be too difficult, you may want to check out Autism on the High Seas. Partnering with Royal Caribbean Cruise Line, the company provides options of travelling with AOHS staff for support, or helping you book cruises where accommodations are available without hands on assistance (such as priority boarding). Options include cruises for adults with autism, but it’s recommended you book these cruises far in advance, as popular itineraries may sell out quickly.

How To Get There?

We’ve always been road warriors of sorts—my general rule is that we drive anywhere within 12 hours driving distance, and I’ve always preferred the convenience of being able to stop and take a break along the way whenever we see fit. For a family of five, it’s also often cheaper even when you factor in the wear-and-tear on the family van.

Anything further and we fly, but when researching which airlines might be more autism-friendly, sadly I came across very little information. A delightful United Airlines employee did contact me to answer my queries (coincidentally, she has a child on the spectrum): the airline recommends contacting a gate agent to request pre-boarding if you feel you need to and packing your own snacks, since there are very few items available for individuals on a restricted diet.

Whichever airline you choose, it’s a good idea to call in advance to ask questions about lines, pre-boarding, special diets or other assistance you might need. While the airline might not have official policies regarding children with autism, this doesn’t mean it won’t accommodate your requests. The Transportation Security Administration (TSA) recently announced a new customer service option—TSA Cares—to serve travelers with disabilities. It remains to be seen how much they care, however, as they failed to answer my phone and email enquiries.

The TSA website (see Find Out More) provides limited information, but doesn’t specifically mention autism or issues associated with the disorder, like trouble waiting in lines or being touched by strangers for screening. Bottom line: if you’re travelling by air, you might want to approach an agent and explain that you are travelling with a child with autism and ask what they can do. Perhaps they will give you priority in line, and according to their security procedures, they may modify how they screen your loved one (though nobody is exempt from some form of screening).

If you’re travelling with medications, you will need a letter from a doctor or health care practitioner. There are also allowable exceptions to the amount of liquid you can carry on if you are travelling with liquid medications, again with a doctor’s note. Be sure to check out TSA Care’s guidelines on medications, which can be found in the Traveler’s section of its website, under Medical Conditions and Disabilities.

There are a few initiatives that show we are going in the right direction. A new free program called Autism Explores, a collaboration between Albert Einstein Medical Center, Philadelphia International Airport TSA and several airlines, allows families to walk through the airport experience with their children as a trial run.

When To Go?

If there’s one time when I envy people who homeschool their children, it’s when I’m making travel plans. If your schedule is flexible you can choose the least crowded times, avoid long lines and often get better deals.

Think through what a location has to offer off-season as well. I love Colorado in the summer time and you can get great deals at ski resorts that are packed in the winter and early spring. I wish now that I’d pulled my children out of school to travel at off-peak times when they were younger—once they reached upper elementary age, it became too difficult to catch up on missed work.

Make It Easier On Yourself

I’m still amazed each time we travel by the sheer number of items we need even for a short trip. I keep a list on my computer that includes all the usual items, along with supplements, medications, favorite sensory items, every electronic device known to man (along with chargers and batteries), and soft headphones. When my son was very young, it was very calming to him to be brushed (a version of the Wilbarger protocol). That tiny white brush was on the top of our list when we travelled.

When we travel by air, each boy has his own carry-on with snacks and entertainment devices, as well as some sort of identification. I ensure my son with autism sits behind a family member on the flight, because he tends to kick the seat in front of him; I also fill out a stick-on luggage tag and, when he’s not paying attention, put it on the back of my youngest son’s shirt. Although he can speak, if he were to get lost and be very agitated, he may not be able to communicate reliably. Only you know your child and can determine the details that will help keep them safe, calm and happy in different environments.

When we were living in Singapore, our live-in helper (called “amah” in Asia) would often travel with us so that we had an adult for each child. My husband has often said, if you have one child, you can double-team him. Two, and you’re into a man-on-man defense. With three children, you’re in a zone defense and, in our case with three very active boys, at a distinct disadvantage. It’s possible you have a babysitter, therapist, niece or someone else whom you could invite along on your vacation. An extra set of hands and eyes can be invaluable, and you and your spouse might even get to eat dinner by yourselves one night. Imagine that!

Like everything else with our kids, the three most critical determinants of a successful venture are preparation, patience and a sense of humor. So, pack your bags, pretend you’re fearless and go for it! Bon voyage!

Doing Disney…

Lisa and Rick Garza went to Walt Disney World to celebrate their graduation from dental school and have been fans ever since. But when autism entered the picture, they wondered whether they could navigate the challenges of vacationing while maintaining a GF/CF diet and working around sensory and behavioral challenges.

Rick, an endodontist, and Lisa, a dentist, had already made many modifications in their lifestyles due to autism. They desperately wanted to provide their children with as many fun childhood experiences as possible, and so they both got to work researching how to have a successful vacation. According to Lisa, Rick took the lead on much of the planning, joining an online travel blog for families with autism travelling to the Florida theme parks. With careful planning, they’ve made several successful trips.

Garza recommends that parents with young children stay at one of the properties along the monorail line to avoid waiting for buses. “If it’s a once in a lifetime trip, I think it’s worth the extra money to avoid time waiting and an unhappy child,” she says. One year, when they chose to stay at a property not on the line, she says they spent too much time apart tag-teaming the kids, and much more time in transit to the parks. The three properties along the monorail are more expensive, so there is a definite trade-off.

You’ll also need to consider whether you will need a kitchen. The Garzas have made arrangements in advance for a small refrigerator and microwave when the accommodations did not include a kitchen. This, Lisa says, was good enough to get them through the week. If your child follows a restricted diet, Garza says there are many choices in the food and beverage facilities, but it’s important to call ahead. “If your child is not picky, it’s likely you can find GF/CF meals in a variety of venues,” she notes. “If your child is extremely picky, like mine, you can call ahead and request that a favorite can be waiting for you at a particular restaurant where and when you plan to eat, even if it’s not offered on their menu.” Careful planning, she says, is important but will pay off. “If you do your part, they will do their part,” she says of Disney staff.

Morgan’s Wonderland is all about special needs families…

By Linda Smeltzer

Quite possibly one of the best places to go with anyone and any ability, Morgan’s Wonderland will meet all your family’s special needs. Gordon Hartman, father to a special needs daughter named Morgan, created this inclusive wonder park so that children and their families could have a safe and wonderful time together. After my husband and I showed the kids the Morgan’s website, we put it on the calendar for the next weekend we had available.

When we pulled up to Morgan’s, the kids were so excited: Nick, our injured son, was ready to jump out of his seat. The entrance was grand and inviting—clearly Mr. Hartman had carefully planned this entire park to meet the needs and wishes of his daughter. The activities and attractions are accessible for all abilities, and the staff are friendly and helpful, ensuring that all visitors get the most out of their visit to Morgan’s.

When first entering the park building, visitors are greeted by staff and entered into the facility’s GPS system so guests can be located should they wander off from their group. A lightweight GPS bracelet is placed on each guest’s wrist, leg, belt loop, or wherever needed to accommodate sensory issues. Should there be a wandering incident, a quick enter into the system and the location of the guest is pinpointed in a matter of seconds. How awesome, right?

The park provides tons of choices for guests, with attractions spaced in a manner that doesn’t overwhelm visitors, but also won’t exhaust them getting from one location to another. Our first stop was the giant play-scape—wheelchair-accessible, large, covered from the hot Texas sun, and truly fun! Our entire family had a blast running, hiding, swinging, rocking, and climbing. After all that activity, we relaxed with our coconut waters and snacks at one of the many tables provided. As visitors can bring their own food and beverages to accommodate special diets, the food hut filled with carnival favorites wasn’t even an issue as we enjoyed our favorites brought from home.

Next we were off to Water Works, a very large multi-sensory water feature that had things squirting, making music, and more. The kids loved the dam-building feature that allowed them to move water this way and that, and stop it completely if they wanted (bring extra clothes for this one!). Next we headed for the swings (all styles are provided to meet various needs), then the giant covered sandboxes and the music garden. The Carousel was also adapted and a delight to ride. For those who love wheels, they have rigged Jeep style vehicles and a scenic train ride surrounded by beautiful landscape and soft music from around the world. Love to use remote controls? Then head over to the wharf, where you can race boats and even go fishing for real fish! We had so much fun trying to catch the fish and then we were chasing each other’s boats, a true highlight of our visit to Morgan’s.

The Sensory Village was also a favorite in our house. These inside attractions consist of a large grocery store filled with play food, which makes for all kinds of fun and interaction with other guests. It also has two Equicizer horses, an area to pretend to be televised weather forecasters, interactive technology walls, and an area to design cars. Still have enough energy for more fun? Check out the Event Center, a cool/heat zone filled with balls of all kinds, basketball hoops and soccer nets. It can be transformed for meetings, large gatherings and events and includes a beautiful amphitheater!

Tons of wonderful memories have been created at Morgan’s. For us, it was the perfect place to meet new families and chat while our kids played easily together without issue. To learn more about Morgan’s and their recent involvement with TV’s Extreme Makeover: Home Edition, check out www.morganswonderland. com.

 

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© 2012 Autism File is a lifestyle guide to achieving better health. It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers. The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions, products or procedures that appear in this website. All matters regarding your health should be supervised by a licensed health care physician. Copyright 2011 Autism Publishing Group, LLC. All rights reserved worldwide.