Oh Canada!

We are headed out this summer, my son with autism and I, on our biggest, boldest travel experiment yet. We are going to travel thousands of miles to attend a wedding of a former therapist who is getting married in the Canadian Rockies. This trip is fulfilling a lifelong dream for my son–leaving the country!

More details to follow!

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.

 

 

Navigating Life in Texas

I have been lucky enough to work on a project for the State of Texas’ Health and Human Services Commission to help launch (in a very small role in a huge major multi-year effort) a new website that will help parents with children with disabilities and special health care needs find their way to services. It’s called http://www.navigatelifeTexas.org and boy, is it a revelation. There is so many ways that parenting a child with special needs is confusing and this takes so much of the guess work out.

If you know anyone that parents a child with special needs, I encourage you to have them visit the site: http://www.navigatelifeTexas.org.

New York, New York

One place I’ve always wanted to take my son, who loves art, is to New York City. But, my goodness, the sensory challenges. And now, with the 25th anniversary of the passage of the American with Disabilities Act, the Metropolitan Museum of Art is highlighting its programming for people with disabilities. I am very very curious if anyone has experience going to the museum with an autistic child or adult. It’s a loud place, I was just there, on a solo trip in May. But, the art. Oh, breathtaking.

Touring the Capitol for Autism

As a parent of a child with autism, I have taken many “trips” to the Texas Capitol building, and it is a gorgeous structure to tour. However, I’ve never been there as a tourist, not once in my eight years of trips as I’ve always gone there as an autism mom and advocate. I’ve testified at every session since 2007 (the first session that I knew my son had autism) on legislation related to disability services, special education and access to autism therapies. I have seen many interesting nooks and crannies of the Capitol building during my now eight years of autism advocacy and learned a thing or two about how laws are made and how advocates working together can make a difference.

I started my efforts with the 2007 Session working to get laws passed for the coverage of autism therapies and now just finished testifying at the 2015 session, again in support of access to autism therapy. One of the things that I learn is that slowly oh, so slowly, does autism law change. But, the few laws I’ve been able to see change have been well worth it.

This year I was speaking in defense of funding that is certain to be cut, and that’s a real shame, because my own child has benefited so greatly from the type of therapy on the chopping block–funding for Applied Behavior Analysis (ABA). ABA can help children with autism gain speech, reduce tantrums and allow them to more fully participate in life by helping them overcome some of their anxiety that keeps them homebound. I testified, not because my son would likely use this program, but because other children in the state need this opportunity.

I know for my own son, ABA helped him immensely. He’s able to leave our home, attend school without tantrums (well, very few) and speak in sentences, all things that were impossible to him 8 years ago. I’ve even asked him as I’ve watched him excel in school and manage his tantrums, “How did you accomplish so much?” and his answer, “the therapies worked.”

Sometimes the best trips are those not taken

In 2013, we were able to manage and enjoy the Austin Trail of Lights at Christmas time. It was a wonderful experience for us and really made our family feel like we had turned a corner in our son’s autism. It was something that for years he could not manage and then through buying a FastPass and paying extra to enter early, we were able to stroll through the lights and displays joyously as a family. For those of you who have autism, you know that getting to be out in public can be a challenge and this was a big event for our son. He loved it.

So, we eagerly bought our tickets to the 2014 trail event. However, our day that we chose, was cancelled and we were given the option of attending on the weekend to make up for it. And we just thought as a group, “no, that’s too crowded” to be fun. So, sometimes, you make the decision NOT to travel and that’s also a good part of the journey. Instead we watched a Christmas movie on TV at home and baked cookies and this activity still felt plenty festive.

We didn’t consider it a “failure” that we couldn’t attend, just a change in venue for our family party. Also, my son was very flexible, although disappointed that the evening we had tickets for was cancelled. So, that was another big step on our journey in autism–learning and accepting changes to our travel plans.

Have you had a time when NOT traveling was actually the best idea for your family? Leave us a comment and share your story.

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.”