Education, etc.

Every adventure is an opportunity to learn, and every lesson is an opportunity for adventure! 

As the parent of a child with autism, this has been both rewarding and stressful, and often at the same time. As a teacher, I know that every child, those with autism and those who are neurotypical, are each different with unique needs. This is, perhaps, never more true than it is when it comes to traveling. For some families, a quick trip to the amusement park is a simple walk in the park. For our family, it requires planning, structure, flexibility, an “all for one” approach, a “divide and conquer” mentality, scheduled down time, and freedom to throw all the plans out of the window at the drop of a hat!  That may sound contradictory, and believe me, it is, but it is also a lesson we have learned for what works with our family. I will share these hard-learned lessons with you in hopes that some of them will work for you if you are just starting to see how autism partners with your family’s life.

Planning

          We can drive ourselves crazy planning every detail from where we are going to who is eating what on which day. For our family, this is especially stressful because we have one person who likes to have every detail planned for, most of the rest of us can go with the flow, and one who can make sure even the best made plans are as secure as wet single ply toilet paper. 

          If you are taking a big trip to a theme park that requires tickets and overnight stays, I suggest working with one of the planners for the park. When we took our first trip to Disney, we used a Disney Vacation Planner. They can usually help you see the best places to stay, the best times to go, and can help you with any information that you need for accommodations. We did the same when we traveled to Universal for the Harry Potter experience. Both of these planners were extremely informative and made navigating what can be an overwhelming process that much easier. 

          Each theme park, Disney and Universal, had a program or option for individuals who needed accommodations to enjoy the experience. They were extremely helpful, as were the employees in each park. Guest services in each park, usually located right inside the main gate, can provide you with all the information you need and how to use their accommodations. Each theme park does their accommodations differently, so be sure to check with them and learn their ways before heading deep into the park. 

          Although these examples are really big adventures, we have learned we need planning even with the smallest of adventures. We used the big parks as a learning experience, helping teach my son how to assess his emotions and sensory information, how to express how he is feeling, and for us to learn to read his body language when words were just not working at that moment.

Structure

          Our family adventures function best when we have an itinerary. From a simple weekend trip to a week-long excursion at multiple theme parks, our buddy with autism likes to know what day he is doing what. It helps him to know when we will be going to certain places that he enjoys. On our annual family beach trip with the uncles and grands, our buddy likes to know what day is Dave and Busters day. We thought we could be flexible and say, “we will go one day, it will depend on the weather” or other explanations, but that just did not work. He would spend the entire week looking for a rain cloud or asking when we were going. 

          To address this need, we turned Dave and Busters from a stressful requirement to a planned event. We usually arrived at the beach a few hours before we could check in, so we went straight to Dave and Busters. Our buddy and his brother got to have their Dave and Busters time, and the rest of the week was reserved for the beach, the water, and family.

          I wish I could say this was a lesson we learned early on, but it took more than a few stressful beach trips to learn this was an aspect that had to be planned for in the itinerary for everyone to be able to enjoy their time. In return, our buddy learned that sometimes it is best to plan if he wants to do something. He also learned that everyone else has things they want to do, too, so if we all give him this opportunity, he must be willing to do things we want to do, too. That lesson has been learned, within reason. 

Flexibility

          We used to plan every detail for a trip just so we would be prepared. Our itinerary could sometimes be down to the minute. But real life does not work that way. In real life, you must be flexible. Sometimes autism riding shotgun does not make flexibility a familiar. Now, before anyone assumes I am being disrespectful by saying “autism riding shotgun,” believe me, I am far from disrespectful about an aspect of my child’s life. Instead, I am pointing out that some days autism rides along in a bag in the back seat while other days it takes over as driver and navigator. And as a parent, I must be flexible for the times when he needs me to bend to overstimulation, to exhaustion, to not being able to find the words to communicate how he is feeling, and to days when all that we had planned is just not going to happen. How do we remain flexible to these moments? We plan for them. 

          We learned to build breaks into our itinerary. When we went to Disney and Universal, we planned our lunch breaks to have quiet moments. We packed picnics and found benches near the lockers where we could sit and eat in the shade, always away from the hustle and bustle, where we could talk about how our morning was going and what we were thinking about for the afternoon. We talked about what we enjoyed and what was not as fun as we thought it might be. We took turns, we listened, we modeled what we wanted our buddy to do, and we helped him express himself when he was not able to on his own. And when he would jump up and say, “let’s go,” we knew the break was over and we moved on to the afternoon’s activities.

          Most importantly, we learned that since Rome was not built in a day, our vacation did not have to be packed in one day, either. We did not have to go running from one ride to another. We took our time, we looked for hidden Mickeys at Disney. We cast spells at Universal or enjoyed a refreshing drink on the way from one ride to another. We taught him to enjoy the in-between moments as much as the major activities.

An “All for One” Approach

          There have been times when we have said, “we are a family, and we are doing this together.” And, it worked. My husband and I took the boys on a tip to Pigeon Forge, Tennessee to go tubing down a man-made snow hill. It was our adventure to see snow. Now, before you ask why this was an adventure, we are in southern Georgia where the only snow we get comes in late February through early April in the form of pollen. So, for us, a trip to see snow was a grand adventure. We went together, we got our tubes together, we all looked silly like we would fall over on the conveyor belt that took us up the hill together, we all squealed coming back down the hill, and we all laughed at each other in the process. What we did, we did together. 

          This was especially true at Disney and at Universal. Their accommodations are specifically for the individual with the need, but we wanted to ride as a family. This meant that we all rode the rides together. If it was something he really, really did not want to do, then we found a way for others to do it without him, but for the most part, we were a 6-person group (the grands made the trip happen) and we operated as such. 

          To move a 6-person group, effectively and efficiently, through a theme park, took planning, but we made it happen. Our buddy had to learn that it was not all about him. There were times he had to ride something that was not at the top of his list. But we also made sure he knew that we did not see him as a ticket to the front line, that what he wanted to do mattered to everyone else just as much as what everyone else wanted to do.

A “Divide and Conquer” Mentality

Even though we try to approach all things as a group, there are times when that is just not going to happen. There are times when we must divide and conquer, or divide and rest, as it usually ends up being. On our big adventure to Disney and Universal, there were times when we had a group that wanted to go to a certain show while others wanted to go on back to the hotel. These were times when dividing up was best. 

On the Tennessee snow trip, we had an evening open on the itinerary and the boys wanted to race go karts. So, we did, together. We purchased enough tickets for the 4 of us to have 3 turns since there were 3 tracks at this particular place. After 2 turns, our buddy had had his fill of racing and decided the last track was just not for him. I decided to sit out with him, giving our tickets to my husband and our other son. Our buddy wanted to go back to the hotel, but that was not in the cards. We came as a family, we would leave as a family, but maybe just these last 2 races, some of us would race and some would watch. So I sat with our buddy and laughed and cheered as my husband and his brother raced and talked smack. 

The hardest part of the fine balance between “all for one” and “divide and conquer” is knowing which is best for the situation. We have learned over the years that splitting up is not best when it is only for one person’s benefit. When we have put every measure in place to make sure the whole family has a good time while being acutely aware of how our buddy’s needs have to be acknowledged, we work hard to make sure that he is not isolated nor allowed to isolate himself. There are times when he needs to have some alone time, and as he has gotten older he has learned to articulate that. We have all learned the importance of communicating so we know when to stay together and when to split up.

Scheduled Downtime

          I cannot say that we never see meltdowns anymore. I cannot say that meltdowns are unique to only one member of the family. What I can say is that over time we have learned the importance of scheduling downtime on big vacations. We used to try to make the most of every adventure, but when we would vacation until we needed a vacation from the vacation, we knew something had to change. This meant learning to not fill every moment in the itinerary. We learned, especially on the big trips, how important it was to have a pool break. We learned these pool breaks could be every day or even an entire day right in the middle of a big vacation.

          When we had a big trip to Disney and one to Universal, we had evening dinners by the pool. We ate as a family. The boys swam after dinner. Sometimes there was a movie by the pool. And we went up to the rooms to shower and go to bed as a family when the day’s adventure had left us all spent. Some days were earlier than others. 

          For family beach trips, we have learned the importance of an after-dinner float. By this time of night, the day had caught up with all of us. Some want to swim, some are more buoyant at this point and mostly float, but it brings the family together in a calming way to end the day. These scheduled down days have helped everyone, not just our buddy. Through these experiences, our buddy has learned to express how he is feeling, he has learned to be a team player, and he has learned that we will always be in his corner.

And freedom to throw all the plans out of the window at the drop of a hat!

          The phrase about not throwing the baby out with the bathwater is rooted in a real meaning. So is the idea of dropping back to punt. Sometimes the best made plans just do not work. No matter how much we plan to be structured, this flexible family occasionally splits up for planned downtime and I still throw my hands up and wonder why someone is having a meltdown. And it’s probably me, but that is another topic for another blog on another day. The bottom line is, we have learned that we can do everything right, and our traveling and vacation plans just do not go as we had hoped. We had many times when I had to explain that you cannot just look at our buddy and say, “well, things happen and it just did not work out this time.” We have learned that we have to approach each vacation with understanding up front that not everything will go as planned. Surprisingly, our buddy handles planning for things to not go as planned a little better than the adults do. Maybe that is a lesson he learned that the rest of us need to learn, too.

          At the end of the day, our successes and failures in vacationing with autism have taught us that we have to account for how autism will impact our plans. It cannot be ignored. It is a part of who our buddy is at his very core. So we plan with him instead of around him. We seek to make each adventure an opportunity for fun and for growth. We ensure that he knows we value his input so that he continues to learn how to share it. We also work to teach him that even though his input is important, it is not the only one in the family. These lessons have not been easily learned, but they have been lessons learned by everyone in our family. And we are grateful to have learned them through the power of memorable adventures.

*UPDATE: He decided I had to blur his face on my blog to protect his identity.