Autism Travel Adventures

Are you going on a vacation or will you be traveling? Some people don’t think there is a difference but I guess there is. Usually when people think of a vacation they imagine sitting on a beach at an all-inclusive resort with a drink in one hand and vegging for the next 5 to 6 days. Traveling may require a little more work on the “traveler’s” part. Most of our trips would probably fall into the traveling category, since I often end up preparing meals for Hunter. I have come a very long way from warming leftover French fries with the hotel blow dryer… just know that when a 6 year old with autism wants hot French fries at 2 am you figure out a way. I have discovered a blow dryer can reanimate those limp fries with a quickness! Okay not to golden crispy glory but well enough to avert a meltdown from my kiddo. My methods are a bit more “sophisticated” now.

I tend to seek out hotel rooms that have at minimum of a refrigerator. A mini suit with a mini-kitchen or full kitchen is golden! There is usually a grocery store near buy, but I am no stranger to packing one suitcase chock full of non-perishables! My checked bag often gets a little extra scrutiny but hey, a girl’s gotta do what a girl’s gotta do… I am also no stranger to packing small appliances my room may lack…no judgement!!

While we are on the TSA topic, I do experience quite a bite of inconsistency in what they choose to single out and it often varies by airport. Anytime I travel through Long Beach (LGB) they treat my unopened bag of basmati rice as though it is an extremely toxic substance. I often have rice and the rice cooker in my carry on bag. Depending on the trip, I don’t always check a bag and I have become quite a master at packing. I will highlight packing in a future blog (something to look forward to, yippee!). Las Vegas (LAS) and Orlando (MCO) are always concerned about my rice cooker and couldn’t care less about the rice itself, again very inconsistent.

The key thing to remember is, you can pack a few things that will make transition into the hotel room easier for you offspring. There may be a few annoyances but the challenges make it more interesting. And I only take appliances on trips within the US. There are different voltage requirements in other countries and I don’t want to burn the building down!

Another strategy is getting a vacation rental home/apartment which usually has most of what you need to feel right at home. I will admit it is sometimes more unnerving and I worry that my kiddo may break something but we have actually faired quite well with most of our rentals. In terms of cost, my family often travel together and we split the cost of the vacation rental. I highly recommend traveling in groups if you can, depending on where you are planning to go. It’s good to have extra people around for support in the event of a meltdown.

The bottom line is, you can leave home without necessarily leaving “home” behind. You can recreate many of the comforts to help your child on the spectrum adapt to the new environment. If you are just starting on you travel adventures, I recommend you visit the same place for a while… maybe a short local trip to test the waters. We started small and have slowly begun to stretch our wings! I will now leave you with a view of one of my “makeshift” kitchens!!

When Hunter was a toddler he fell in love with Disney’s Hunchback of Dame. He knew all of the songs and I loved to hear him sing them. This was before he lost his speech. I loved how he would mimic the vibrato during the opening song. He had a beautiful voice; at one point I believed he may even be a singer… then the words, his voice, went away. Every now and then I would overhear him sing a few of the movie tunes but it was rare. Even still, Hunter would watch this movie multiple times daily and remained fully intrigued. I always wanted to take him to see the the real Notre Dame; after his diagnosis however I thought that would be a dream that would never manifest. I figured there would be no way he could tolerate the plane ride. And he would never be able to go inside due to some of his disruptive behaviors.

As Hunter grew older and also matured, he would still watch the movie regularly. It seemed to calm him at times. I began to wonder if he would be able to make the trip? We definitely have pushed boundaries. He had grown leaps and bounds. He tolerated the nine hour leg of the flight to Rio de Janeiro… could he possibly handle another hour and a half in flight?

The opportunity rose to go Paris and I decided to test the waters. In preparation for the trip, I told him about the real Notre Dame. I told he he was you going to see the real cathedral and I knew he understood. When we arrived his excitement overwhelmed me so much I wanted to take a picture of him with the cathedral in view. In That moment, he smiled and threw his arms wide open. HE RECOGNIZED IT!

He knew where we were without me saying a word! As we stood in line to enter his excitement grew even more! I became a little concerned… He would not be able to make his usually noises and stimming once we went in. I reminded him that he would need to use his “quiet voice and hands” once we went inside, but I wasn’t optimistic that he would be able to contain himself based on history.

But something remarkable happened when we entered the doors. Though still excited, he became serene and calm. He would make a noise or two, but in a whisper. He seemed in awe of the splendor just as I was. And as we walked through, not one behavior! He knew that although we were there touring, we were still in a place of worship. He was so serene and reverent. I was so proud of him! We have come such a long way!

And then, we heard the bells… It took me a moment to realize what I was hearing, it started with one of the smaller bells. Then the others rang out. More were gradually added until you could hear the full chorus of bells! Hunter giggled and waved his hands when he heard them. I got chills listening and could not resist recording the mesmerizing sounds…the beautiful, haunting, hypnotizing sounds of the bells of Notre Dame!

This day and moment will go down in the books as the most memorable to date! This experience encourages me to continue on with our life travels!

So, we made it to our destination safe and sound. The Air France crew was actually quite friendly and accommodating. I had seen general reviews that weren’t favorable but so far I have no complaints. Hunter slept for most of the flight… better than what he normally does at home. He couldn’t or wouldn’t eat most of the I flight meal, but I’m always prepared with snacks so he didn’t starve.

Toileting on the plane has gotten…interesting to say the least. Hunter is now essentially a man so I can’t exactly go into the closet sized lavatory to assist him. Thankfully people and the flight crew don’t make a big deal of me coaching from the outside. Not ideal but it is what it is.

Once we landed, the gentlemen sitting next to us told me in French ” you have a good son.” I actually understood him and you just don’t know how proud I was of my kiddo after hearing that! Hunter has been quite remarkable and adaptive during this trip. It has been quite a journey navigating the rail/ metro system with him in tow and he has been such a good sport about it.

And I’m sure securing McDonald’s French fries has played a huge role in making this journey tolerable. Unfortunately, French fries can fix jet lag so that is my current battle. It has also been cold and rainy but he is handling it like a champ! Well I’m sure he prefers sunny California but, hey…

As far as the people of France are concerned, I haven’t had any rude encounters and most have been quite helpful. We are in a small town about an hour away by train from Paris. We will return to Paris shortly and I will keep you all posted on more of our experience there! Until then, Viva la France!

My son has always loved Disney’s Hunchback of Notre Dame. I have always wanted to show him the real cathedral. Today we begin our journey to Paris, France! This will be our longest international flight to date ( Rio de Janeiro was the original). I’m pushing the flight time boundaries by

1 more hour in the air. This is our first experience on Air France so I am looking forward to sharing our “autism” experience on this airline! Stay tuned, and share our fun!

I guess I should start with our first trip. Hunter was almost two years old and had not received an “official” diagnosis of autism. At this point, we still had eye contact and he had not totally withdrawn… but the speech that had developed up to this point was slowly diminishing. We proceeded with hearing tests and ruling out other potential causes for the speech loss. He would not receive the official diagnosis until he was 3 years and 4 months old. But for the most part, he was just my wild and crazy little guy!

So, the first journey we embarked upon was to Las Vegas, Nevada. I know, weird place to take an almost 2 year old but it was kind of a family affair. My mom, sister, and her son joined us. His dad, my ex-husband was supposed to join us as it was also our anniversary, but things don’t always go according to plan; in more ways than one. But I digress….

I packed  up the little guy, his Elmo collection and a multitude of Fruit Loops, graham crackers, and whatever else I thought would get us to safely delivered to our destination. It was Hunter’s first time on an airplane… He sat on my lap and thankfully dozed off for the short flight. In addition to the previously mentioned snacks, I had packed another bag full of Rice Dream. We had discovered at this point that Hunter had anaphylactic reactions to milk, eggs, and peanuts. We suspected wheat allergy at this point but had not changed his diet yet. In addition to the allergies, Hunter had also developed food texture aversions and would not eat anything with the consistency of oatmeal, pudding, etc. This noted the beginning of travel challenges that we still face today. One of the biggest issues now is wondering if the place we will be traveling to will have food that he will eat and hopefully will not kill him! We had thankfully discovered at this point his love for French fries. Fortunately, the texture aversion has improved and so has the food arena for him, but we will discuss that in detail in future posts. We had hoped Hunter would outgrow the allergies by the time he hit the teen years. So far, that has not happened.

It is not uncommon for kids on the autism spectrum to have food allergies and/or sensitivities. Hunter has both, and we later learned learned that we needed to avoid wheat, soy and shellfish in addition to the others. Many kids on the spectrum also may be partial to certain foods and avoid certain textures. The food dilemma often keeps parents from exploring with their kiddos. With planning, thankfully this challenge can potentially be overcome. And with McDonald’s French fries… lot’s of McDonald’s French fries (there will be more on this later, rest assured)!

The only problem I ran into on this trip was I did not bring enough Rice Dream. It took several calls to the hotel concierge and ultimately a long cab ride to the only market that carried Rice Dream during that time. Milk alternatives other than soy were just beginning to break out and finding one that Hunter would drink was not easy. Using another brand was not an option.

The trip for the most part was fairly uneventful. It was the initial spark that got us where we are today. Not only was it the first journey to a different destination, it was the beginning of what I would later learn was a life journey on the autism spectrum. The take home points from this story is that we began light travel while Hunter was still pretty young. That may have had an influence on how he responds to travel in general now. Also, I learned that the importance of the 6p’s: Proper Planning Prevents Piss Poor Performance!

But before I go… one more shot of my crazy little guy… cute little stinker wasn’t he!