Category Archives: why we travel

TSA Cares program helps disabled travelers

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Of the many horror stories that I see on social media about traveling with a disability, the ones that usually scare me the most relate to getting kicked off of an airplane or having a terrible time at security. So, to assist passengers with disabilities or special healthcare concerns, the TSA has created a program called TSA Cares that allows you to call in 48 hours prior to check-in and request assistance getting through security.

I called TSA Cares yesterday (1-855-787-2227) at their Kentucky-based offices and spoke with an incredibly helpful young man about how I could get through the TSA security lines with my son with the least amount of worry. He told me that at any time, you can request “going to the front of the line” with a person with a disability. Make this request to the TSA supervisor at the airport you are using. Ask if there is a Persons With Disability (PWD) line that you can utilize. At some airports, they will direct you to the TSA fast pass lane. TSA did not require this, but I also always travel with my son’s doctor’s diagnosis letter with me along with passports and IDs. Since autism is an invisible disability, I like to have all of my paperwork handy so that there is no confusion about the need for accommodations.

And if you are inclined to complain that people with autism should have to wait in line like everyone else, that’s like holding a grudge that those with physical disabilities get the best parking spaces. P–u–leez. Give me a break.

It’s really really hard to travel with autism and every effort should be made to be inclusive and helpful to those traveling with challenges. We all want to experience life, and travel is a part of life.

My next phone call is to the Vancouver Airport to see what kinds of accommodations are available for autism as we make our way for the first time through customs and immigration. Wish us luck.

And Travel Well.

 

Holiday Travel–Do’s and Don’ts

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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.

 

 

Love this blog on wheelchair travel

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Check out this really well written blog about traveling in a wheelchair. What a great guide. And the layout of the site is just beautiful. Puts my little diary-like blog to shame. But, it gives me something to go for in the future. It also encourages me to get more opinions from my son as he grows up. He was a small boy when I started the blog and not one to have many things to verbally communicate. He’s made more and more strides in the last 5 years that I want to have a he said/she said blog post in the future. I do get his opinion but I’d like his voice to come through more clearly in future blog posts.

Happy Travels!

San Antonio Way

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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.

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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

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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.”

 

Ski trip teaches confidence and courage

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It’s been three years since I had the budget or the time to take my son snow skiing in Park City, Utah, at the National Ability Center. And it’s expensive to get there from Austin, so this is a pretty big chunk of change just to ski for four days. But, after it’s over, I cannot imagine not having this experience for him. He’s super excited to go and it’s one of the only things that makes him spontaneously talk to people at school.

He’s still enthusiastic when we get home and his teachers and therapists all report that he is more social before and after his ski trip because he has such great memories of the trip and is motivated to talk because of this experience. For someone with autism, it’s a pretty big deal to initiate conversation and this is one of the only topics that seems exciting enough for him to overcome his speech disorder and social anxiety and plunge into having a conversation. Thus, ski trips seem expensive and frivolous when there are therapy bills to pay, but for our family, it gives us a chance to let our son shine in a way that he rarely does–socially.

Each morning as we left our condo to “hit the slopes,” he would gear himself up by saying, “Now I will gather my courage.” So, even though it was scary to him to try skiing, he conquered those fears and followed directions well. Also, he just adores Park City, Utah. When asked how he liked his ski trip, he said, “It’s like we are in a living heaven.” So, I think it’s pretty worth it to him as well.

Trip Tip: If you do go to the National Ability Center, make sure to book your child’s lesson far in advance, as far as you can, because I booked three weeks out and was on the wait list until we got there and almost did not get a lesson. The Center teaches skiing and other winter sports to children and adults with physical and developmental differences. Lessons are very reasonably priced, but it’s just the cost of getting to an expensive resort that will set you back financially. If you live in Utah, lucky you! And a final note, if you think your child will have problems with focus while skiing (pretty dangerous to lose your focus if you’re on skis!), ask the instructor to use the tethers and safety harness. Not every instructor likes to do this because they want to teach independence, but I wanted my son to ski safely more than I wanted him to ski independently. I’ll post a video next post.

Staycation Vacation

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Autism is challenging. There, I’ve said it. But, I still like to have fun, and so does my son. So, one of the best ways we can vacation is to staycation. To achieve that summer bliss, we enjoy spending a weekend in a local hotel–our favorite is the Austin Renaissance Hotel–and enjoy feeling very far away even though we’re close to home.

The last weekend before school is a great time to get away. Most people with autism need constant scheduling and consistent routines. Well, that is not what summer looks like. I try to book special needs summer camps that provide my son a consistent routine, but even with advance planning, we’ve still had four weeks this summer of very little structure. As a result, his autism-induced nervous tics have gone into overdrive. He’s coughed all summer from anxiety, not from a medical condition. Yes, friends, we’ve seen specialists and therapists about this problem, we are just waiting it out until school starts and his routine improves for this to get better. It’s a waiting game with his tics.

We both needed a vacation.

Thus, we decided that the hassles of an airplane ride and the exhaustion of packing up weren’t worth it and opted to spend the weekend at a close-by nice hotel. We swam, we lounged, we hottubbed (is that a word? it should be), we relaxed. It was really nice.

So if you think your family cannot handle the stresses of a vacation, what about the pleasures of a staycation? For us, it really helped us achieve the desired “summer vacation vibe” without spending too much money (I think $139/night is a great deal) or even leaving the city limits.

All I want for Christmas is a passport

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Traveling with our son is pretty complicated. We have to write social stories, pack all of his food for his autism diet, and troubleshoot as much as we can with the condo we’re renting, to make sure that there will be no obvious problems for our son’s sensory issues.

We have gotten very used to doing lots of homework, preparation and mental jujitsu to manage our son’s anxiety when we leave our house. Each and every time is a challenge.

But, oh, so worth it.

Whenever our son has a new experience, he adds it to his creative world. And we are enriched from it. He speaks rarely, but when he does, it revolves around where we’ve been and where he wants to go.

When he was asked what he wanted for Christmas he answered with serious focus, “I want a passport.” Why? “So, I can go to faraway places.”

Oh, my wish is for the world to get flexible enough to handle our son’s autism and allow him to experience all that he wants in this world.

Santa did grant our son’s wish. Santa brought Jackson a passport application in his stocking. Now, we just have to figure out how to get him on an international flight.