A trip not taken is sometimes the smartest travel plan

Sometimes the smartest travel plan is to choose NOT to travel. In parenting, and particularly with autism parenting, you have to decide that a trip will be too hard to accomplish at this time. It’s not that you’re giving up on the idea, it’s just that right now, not everyone in your family can travel a great distance.

I know my son has the ability to manage a 5 hour flight, but at this time, a 10 hour flight, no. As you may recall, we’ve traveled to one of our favorite therapist’s weddings in Canada two summer ago, and just that distance within North America was a very big challenge for us. When a close friend decided to get married in Cornwall, England, I had mixed emotions about how to accomplish this outing with children in tow.

National Trust seaside park, Cornwall. Celtic Sea in the distance.

Originally, I had planned to take my entire family and then discovered that expense prohibited that choice. Then, I thought I would just take my son who loves British history and then the length of the trip to London and then to Cornwall just seemed a flight too far. And then I thought I would just take my daughter, who I can more easily travel with, and then I thought…I’m in a wedding…I need to focus on the wedding.

So, you can see a great deal of thought goes into the decision of “who can come on a big trip?” It’s not a clear decision when a family member has autism. There are many additional thoughts that have to be accounted for–can I get the food we need for the special diet? How much of the setting can I control? How exhausting will the actual travel be? As I had not taken this trip before, I didn’t feel that I could anticipate enough in advance to make this a smooth experience for my son or even my younger daughter. In the end, I went alone to my friend’s wedding and our kids went with my husband to visit his family.

Morrab Gardens, Penzance

And let me tell you, it is a strange experience to travel alone for the first time in 18 years. And yet, by taking this time to decompress in nature, at a friend’s joyful event, I have more internal space to approach a new school year, an important milestone birthday for my son and the recent passing of my mom with greater clarity and calm.

So while I am determined to get my son with autism to Cornwall (and the rest of my family!), I felt the first trip was a good scouting opportunity for me. I was able to see what parts are going to annoy him (the overnight flight may need to be broken up into two legs), the long train ride (again, may need side trips along the way) and the lack of gluten-free options in Cornwall, England. I’m sure the dining options are there amidst all the fish and chips and pub food, it’s just that I’ll need to do a better job finding them before my next trip across the pond.

If you have visited Cornwall and have suggestions for me and my son, feel free to leave us a comment. Brilliant!

Holiday Travel–Do’s and Don’ts

When you’re traveling with autism, usually the holidays are not your best choice of travel dates. Today’s blog entry will be a good primer in what NOT to do when traveling with someone who has autism. As we left with little notice, we did not do our normal protocol of traveling–like researching food options at our destination and writing a social story for unexpected flight delays. We did pay attention to our son’s internal timetable though, and that’s the number one way to make trips a success.

For flights, I have always tried to book our air travel portion over weekdays and far from national holidays like Christmas. But, this past holiday season, it couldn’t be helped. Our son really wanted to visit his grandmother and requested this at the last moment. As our son rarely makes requests, we wanted to honor this.

We ended up booking the flight with only a week of notice, we got terribly expensive tickets, and packed at the last minute, not really getting him prepped or his food prepped properly for a trip out of state to a place where we were not familiar with the restaurant options.

The flights going to grandma’s were okay, but his main concern the entire trip was trying to get wifi. A new obsession for us to worry about is his need to get wifi access for his devices. In the past, we didn’t need to worry about this issue. So, this was a new stressor. I cannot say that we had a great plan, other than using our hotspot from our own phones to boost our son’s device. If you have a brilliant idea on this, please leave a comment!

For food, again we needed to have planned ahead better. Looking for gluten-free food when you’re traveling in the U.S. Deep South is not an easy feat. We found a Japanese/Thai fusion place that was not what I would call amazing food, but was edible and gluten-free, our only real concern. Again, we should have planned ahead better knowing the regional options for food.

However all is saved by staying in a hotel with a pool. Our son loves hanging out in hotels, so this is always a good thing on any vacation. For food at the hotel, he was able to find some gluten-free options but not any bread options as few hotels at their free breakfast bars have gluten-free bread. Again, since we traveled at the last minute, we did not do a good job of planning ahead. We should have packed a loaf of our own bread in our carry on.

He also only wanted to see his grandma for the day. He wasn’t there for a long trip. I’m not sure about other children with autism, but for our son, he is checking off a box mentally. Did he see you? If he saw you, then he has “visited” you. There is no sitting around for days chatting with him.

For our son to feel that the trip was successful, he wants to see you, spend a little bit of time answering your questions and then is ready for a restaurant and a museum or zoo! Something fun and visually appealing for him. Again, nothing that involves having to talk, but just looking at things together. That is a huge happiness for him.

And I think this is the most important point of traveling with someone with autism. What makes the trip a success TO THEM? Not to you, not to someone else, not to your relatives who will have expectations, but to the person with autism. Try to see the trip through their eyes. This will save you a lot of frustration.

Our son just needs to be doing something with someone, not sitting and talking for him to stay happy. He doesn’t have to be interacting like in a conversation. To him the shared experience IS the conversation.

When he’s ready to go, he’s ready to go. So, it’s back to the hotel. And then the next morning, he doesn’t want to see anyone, he’s just focused on getting on the airplane and heading home. He doesn’t maximize time with someone he loves, he just enjoys the time that makes sense to him to spend.

 

 

Lady Bird Johnson Wildflower Center

On Black Friday, while millions were flocking to the malls and superstores for deals, my family relaxed at a beautiful Austin location–The Lady Bird Johnson Wildflower Center.

famgarden_nowopenImage from Wildflower.org website

The new “Luci and Ian Family Garden” is just wonderful. In fact, my son says it’s like “A Village of Wonder!” He could have stayed for a few hours which is really saying a lot because we normally just spend around 30 minutes at most places due to the usual cuprits–crowds, noise, or boredom. While we were there, he was wandering around and exploring and really grooving on the beauty of this new addition to the Wildflower Center. It’s “autism friendly” because there is just so much space to roam and no prescribed way that visitors are expected to interact with the park. This kind of natural setting + open areas = our most successful outings.

Also, as a bonus for the entire family, the Lady Bird Center boasts a restaurant. It’s small and quiet (perfect for keeping sensory overload at bay) and has several gluten-free options. Nothing specifically gluten-free, but there are options, like baked potatoes, salads and chicken dishes. From this limited menu, we were able to cobble together a very healthy meal for our son who is on the gluten-free, dairy-free diet that many kids on the spectrum live on.

On the Autism Friendly scale: Our family gives this family field trip location a BIG thumbs up for beauty, calm, and best of all, wonder.

Austin City Limits Music Festival

My son, who is normally very afraid of loud noises, has asked if he can go to this year’s Austin City Limits Music Festival, known as ACL. I bought us two tickets. I have earphones. I have toilet paper (porta potties, yuck). What I don’t have is a plan.

I’m not even sure where to start. I’ve tried calling the ACL number listed on their website and it’s a recording for the music promoter that’s handling the ticket sales.

I need to talk to someone at ACL to see if they have some suggestions about how they accommodate people with disabilities at such a loud, crowded event. I’m really most concerned about the food issue, as my son is on a gluten-free and dairy-free diet for his autism. They search backpacks when you enter, so I can’t just waltz in there with his day’s food without talking to someone. Also, it would be ideal if he could hang out somewhere away from the music without having to leave, like a volunteer tent or something like that.

I know, I know, it sounds crazy to even try, but when my son wants to try something, I really go into action mode to make it happen. Perhaps we’ll get close to the gates and he won’t be able to manage the noise and crowds. Well, then, I guess this experiment was $180. I give him a lot of credit for even wanting to try.

My next steps are to call the City of Austin ADA department to see if they have any ideas. Do you have any suggestions, dear reader?

I’ll keep you posted.

Flying with Autism

Air travel can be tricky, for anyone. It’s particularly difficult for children with autism, as the experience is completely out of their control, flights are delayed or worse canceled, and add in the noise and waiting, and you have a recipe for stress. That’s why I’m always a bit nervous when we fly. Not so much that I’m not willing to take big trips, but enough to where I have developed some travel routines when I fly:

  • I always check with my airlines about bulkhead seating 2 days before departure. This is the time when the airlines are assigning these seats. Bulkhead seats are typically, but not always, reserved for passengers with special needs.
  • I bring presents on board that are small, but fun, that will keep my children occupied, I give these out every 15 minutes for long flights. I have traveled with 20 presents before.
  • I introduce myself and my special needs child to the attendant when we board, so that possibly, they will know who we are if I need to request something.
  • I bring tons of headphones, videos, books, art materials, snacks, stuffed animals, and basically try to keep my children engaged the entire trip.
  • I have a story written with pictures that describes what we are going to do every step of the trip. (Google Carol Gray Social Stories for more information)
  • I hope for the best and plan for the worst. I have a first aid kit with me for minor health complaints. I don’t want my son crying in mid-flight because I didn’t have a band-aid on me.

We have been flying for years now, and except for one loud yell on a flight about 3 years ago that I think was related to a stomach ache, we’ve made it through hours of flights with no incidence.

Much of this is attributed to our work to prepare for the flights, but also, much of the experience is in the hands of the airline and the other passengers. If they’re helpful, we stay calm, if they’re rigid, we get nervous.

Our most recent flight was with American Airlines and they were absolutely great. We’ve also had good luck with Delta. I always call the airlines ADA number before the trip and list our son as disabled so that when we check in, they’re aware and allow us to pre-board.

I hope all of this information helps you on your next flight. What are some ways that you travel with your children with autism? I’m always looking for new ideas.

San Antonio Way

As San Antonio is within an hour or so of our house, it is one of our favorite (and easiest) vacation destination. Each summer, if my son has “earned” it, through reaching his behavior goals (don’t tell him, but we arrange it to where he is always able to earn it!) we travel to a close-by hotel for a night away.

Unknown-5

La Cantera Resort, San Antonio, photo from Destinations Resorts

This summer, as with last summer, the travel fates smiled upon us and I was able to find a Groupon Coupon for a $149/night room mid-week at this gorgeous resort–La Cantera Resort, San Antonio. 

We swam, ate by the pool, took a beautiful nature hike on the hotel’s trails that wind around the golf course (NOTE: These trails are not ADA accessible.), and enjoyed a spa treatment. Yes, you read that correctly. My son requested a spa treatment “for a man” he said. So, we used the WoodHouse Day Spa services that are right on site. They were able to accommodate a child with special needs as long as I was present in the treatment room. My son chose a calming 30-minute hot oil scalp massage ($45). He was in heaven. It seems extravagant, but truly, it calmed him so much that it was worth it. Those of you with autistic kids know that calming their minds and bodies is a big part of the experience of parenting our special children.

We were able to secure a late check-out the next morning and then sadly said goodbye to our 24 hours of bliss at La Cantera. Hasta next summer La Cantera! 

Sleep Away Camp is a Dream Come True

I never dreamed my son could manage sleep away camp. His autism used to impact him so severely that he wouldn’t leave our house for days at a time if there was cloud cover. He hated gray skies. And now, he was a part of a camp experience (as an inclusion camper with a 1:1 counselor) where every other week, they went out of town. And this camp was not special needs camp with specially trained counselors and an itinerary with sensitivity to autism. This was for typical children and wouldn’t have the kind of daily structure that his brain craves for a successful experience. But one day recently he said, “I want to go on the camp overnights.” Dumbstruck I asked, “How will you handle this?” And in a very nonchalant way he said, “I’ll be fine.”

I’ll Be Fine.

Oh my.

For years we’ve managed his every new experience, through writing social stories (copyright Linda Gray), prepping him, preparing his caregivers, having lots of options if Plan A doesn’t work out, you name it.

And now, in early teenage years, he’s telling us, he’s fine.

And he was. We held our breathe, packed him up and let him go. For days he had to wander around San Antonio doing what the group was doing, managing the sounds, the sites and the smells of a large group of middle school kids. None of whom had autism. My son was the camp’s first overnight camper with a disability. He is breaking barriers, and more importantly, changing hearts and minds about what people with autism are interested in doing. Autism for him means not talking to others much, but he likes to be with others. That’s his brand of friendship–presence.

The week wasn’t completely glitch-free. On the last night, the counselors, not trained in autism tantrums, accidentally made the group late for a concert that my son was excited to go to. When they were late, he threw a pretty big fit on the bus, but recovered once they arrived at the concert venue. I think the counselors learned, “don’t be late!” as a primary autism imperative when traveling.

When he triumphantly returned home, I asked, “How did you do that????!!!”

And he said, “I just stayed flexible and survived the heat.”