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.

 

 

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ACL Rocks!

Well, we finally did it. We managed to make it to ACL (Austin City Limits Music Festival) and enjoy it without a hitch. My son and my husband enjoyed the Monsters and Men show on Sunday afternoon at the last day of the ACL Festival. Also, if you have a disability, there is an ADA station that you can go to near the entrance to the festival where they have ADA porta potties that are locked and only for people with a disability. They also provide you with an ADA wristband, and if there is room, you can watch some of the bands from an ADA access stage.

The one hiccup is exiting the festival. Once my son is done, he’s done. So, we needed an exit that didn’t require fighting our way back through the huge crowds. To hopefully figure out a solution, I wrote a letter to the ACL festival after we went and asked about next year’s exit plan for people that have autism and need to leave from another exit without fighting through 70,000 people to get back to the one exit gate. The promoters said they would look into this issue for the 2016 concert. So, we’ll see.

I never thought ACL would work, but my son asked to go, he said, “Pretty please, por favor.” So, how could I refuse such a polite request?

My philosophy on outings is…I just try different events with my son and sometimes they’re just not fun and we leave early, and sometimes, with the right supports, we can make it 20 minutes or an hour and that makes everyone really happy. When we left he was very proud of himself and said, “I made it through the whole concert.” Meaning, he made it through an entire act before leaving. We will be back next year!

Museums meet the needs of more diverse disabilities

I’m excited by the recent additions of more and more programs offered by cultural institutions to provide services to differing types of disabilities. For years, ADA has meant wheelchair accessibility, and that’s very important, but also important is meeting the needs of those with intellectual and developmental disabilities, those with visual impairments and other types of disabilities beyond providing a ramp into a building. Speaking from the perspective of a parent with a child with autism, I can tell you that my son benefits ENORMOUSLY from cultural institutions like libraries, museums, and concerts when he can manage the sensory issues. I’m happy to share that our local museum the Thinkery here in Austin has provided several days a year specifically geared to the needs of children with autism and other sensory issues. It’s a great way to enjoy things that typical families take for granted. We all want our kids to enjoy being kids. These community initiatives allow us as parents to help provide that. If you know of a good cultural program that benefits people with an intellectual or developmental disability in your city that you’d like to share, please feel free to add a comment and let us know about it.

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.

Trail of Lights–Better late than never

trail of lights

Well, I’m running about a month behind on this post, but didn’t want to let the year go by without saying that The Austin Trail of Lights has special needs accommodations and we found the event to be a really great experience for our son with autism and our typically developing toddler.

The event was a success because they had early entry (around 6:15 p.m.) for anyone saying they had a special need, or at least this is what the organization told me when I wrote them an email asking about early entry, or special entry. However, I didn’t take any chances, and went ahead and bought the “fast pass” parking called the ZiP pass and the ZiP pass entrance, which allows you to enter 45 minutes before the big crowds of people and at the same time as the special needs visitors. I highly recommend this ZiP pass if you can afford it. I was told in an email from Trail of Lights that anyone with a disability could enter at 6:15, but when we got there, none of the volunteers were familiar with this, so I’m glad that I bought the early entrance package for $60. (I think that’s how much it was, if it was a little more, it wasn’t much more.)

My son cannot handle large crowds, so I went expecting to just leave right away, but the early entry allowed us to enjoy this experience together and I was so thankful for it. If you have a child with special needs, you know that it’s sometimes hard to find activities that you can do as a family and I was so grateful for the magical experience we had together at the 49th annual Austin Trail of Lights in Zilker Park. We will make this an annual visit as long as their are special accommodations. Without it, I think it would prove too challenging to wait in long lines and be so crowded while looking at the colorful displays.

So, now you’ve got 10 months to plan your visit for the 50th anniversary Trail of Lights coming in December 2014.