Elijah was under house arrest. At 12 years old going into public was overwhelming and chaotic for him. At any moment a baby might cry. The hum of the florescent lights were too loud. The cash registers were constantly beeping. The smells made his head hurt and the shelves were all crooked and disorganized. He survived a weekly trip to the supermarket by wearing noise-canceling headphones and curling up in a fetal position in the shopping cart that he was far too big for.
Elijah has autism. Elijah has OCD. Elijah has Sensory Processing Disorder (SPD). He suffers in ways he can not express because he is also mostly non-verbal. His world is a very different experience from yours and mine.
I am here to tell you that autism is NOT house arrest. Elijah is also the strongest person I know. He is my hero.
Today Elijah is living a life of adventure on the road with our family despite autism. Over the past 3 years, he has traveled across the United States and visited over 30 National Parks. He rode his first zip-line and swam in a cenote in Mexico. He even went snorkeling in the Belize Barrier Reef!
What we did not know about Elijah before is that he is a thrill seeker! Because I was afraid to take chances with exposing him to the world I had no idea that he actually loves roller coasters and riding on motorcycles! He hangs his head out the window when we are driving in big cities! He dances like no one is watching when he hears live music in the streets of Mexico.
He no longer dons the bulky noise canceling headphones that I have seen so many kids and adults on the autism spectrum wear. He has taught us that he can handle so much more than we ever thought possible. What we did not know about Elijah is that he wants to explore and go on adventures. We assumed he was better off sheltered from the crazy world out there. He is brave. He is resilient.
Autism is not house arrest.
If you are reading this and you also feel trapped in your own home and autism proofed safe zones because autism has taken its toll in your life I am here to offer you some encouragement. Your child is brave. Your child is living in a world much different than ours too and still manages to make it through each day. Every aspect of life that we take for granted is a challenge for a child with autism.
Every child, teen, and adult with autism deserve a chance to explore and discover what they like to do. When we first started our adventures were small things like visiting National Parks and going on hikes. When we saw that Elijah was watching roller coaster videos online we decided to visit a small older amusement park. He wouldn’t stop asking for “roller coaster please” the rest of the day. That was the light bulb moment for me. I assumed that he would be terrified and hate the overwhelming sights and sounds of a busy amusement park. What else had I assumed? He is a teenage boy after all. What do teenagers like to do? Let’s give motorcycles a chance. What about one of the loudest, brightest and smelliest cities in the US, Las Vegas?
Elijah’s very limited verbal abilities include asking for things he likes. There is not a day that goes by that he doesn’t ask for Las Vegas. He absolutely loved it! The Fremont Street Experience, the Bellagio Fountain, fireworks and roller coasters! Las Vegas was the first true test of his ability to handle a high level of sensory overload and he rocked it! The second big test, Mexico.
Matthew an I love to travel and full-time travel became our passion. After 3 years on the road, we can’t stand stopping for very long and crave that new experience and fully engaging in a community and culture. We decided after traveling around the US for a while that all of us were ready for the next step, International travel. We are currently heading South in a 1966 Airstream until we get to the bottom.
How many times have you been told that Mexico is dangerous? We decided to take a teenage boy who barely speaks any English south of the border. Are we crazy or brave?
Elijah can read and understand what people are saying. His first request in Mexico was “United States please”. The billboards, street signs and everything everyone was saying is suddenly in Spanish. My concern was that his behaviors and outburst would be misunderstood by the locals. You see, autism is a first world problem and just saying he has “autismo” didn’t translate. The second concern was noise. Mexico has an above average level of sounds. Loud music, cars, and random fireworks are a constant everyday occurrence even in rural towns. How in the world would he handle the sensory overload?
We lived in Mexico for 6 months. We made sure to expose him on a regular basis to the chaos which keeps him from getting too comfortable with being in our quiet home environment. Exposure really is key to helping him regulate his responses. He can now walk through a crowded market and loves to dance in the city squares to mariachi music.
At the time of this writing, we are in Guatemala. There are still days when I don’t want to take Elijah into public and start to get that autism house arrest vibe again. He will regress back to old behaviors and it feels safer to just stay home and that is exactly when it is most important to keep his exposure to the world going. Autism and OCD are very common co-morbid conditions. His OCD right now has escalated and to him, the world is out of order. So what did we do? Take him to the market, of course!
Markets in Guatemala are crowded, loud and full of smells. Today was busier than normal too. We observed his mood as he went from stressed to dancing. Perhaps the chaos he felt inside matched the outside and it made him feel safe to just be. We will continue to travel and expose Elijah to new experiences so that he can have a fulfilling life. Our desire is that he can thrive and not just merely survive.
One of the major concerns I have had is how my child’s behaviors might affect other people. I have had a few odd looks and comments but 99% of the people we have encountered have been kind, compassionate and offer help. It is human nature to want to help each other. Give humanity a chance to surprise you.
Autism is not house arrest. Give your kid a chance to discover the world.
If you are new to your child’s diagnosis please seek help and support from these trusted and parent founded and supported websites.
The Autism Comunity in Action (TACA) I was a volunteer for this non-profit. TACA is run by parent volunteers and mentors from all over the US. Look for a chapter meeting in your area and get support from parents that know the road you are on far too well
The National Autism Association This Non-profit gives to the autism community through grants and help with keeping your kid safe with the Big Red Safety Box and much more.
Autism Research Institute – Great resource for free articles and webinars on all topics concerning autism and the latest medical research.
The Autism Society of America – This is a great place to connect with other families and professionals in your area. Look for an Autism Society chapter in your town to find meetings and services available in your state.