Updated: Apr 21, 2018
The dreaded word: travel. I think that my husband and I were forever scarred when our son was two and we ambitiously traveled to Arizona to visit family. At the time, we had not officially started down the path as "special needs" parents. The diagnosis would come a year later. But we knew something was wrong and were basically treading water...every day. Meltdowns were a regular thing - in the car, parking lots, stores, in our home. No place was safe. They came on with little warning and were often wild and explosive. The kind that left you sweating because your nerves were so rattled. We have deep scars from those times - both physical and emotional. So the thought of boarding a plane with no escape route was not appealing. But, we were determined to not allow what we thought was (at the time) bad behavior dictate what we could and could not do...so we went.
We brought a bag full of comfort items, lots of food, strapped our boy into the car seat on the plane and prayed. We sat on the runway for two hours as the plane and runways were de-iced. That was two hours of no movement. My husband and I continuously swapped turns entertaining, cajoling and doing whatever we could do to keeps things copacetic - between our boy, us, and all the other poor souls on the plane. Although, my "copacetic" levels dropped immediately after the flight attendant asked us to sit in our seats while our son's face was turning various shade of purple...but I digress. When we were finally ready for take-off, we were asked to turn off all devices and that's when the fun began. Escalated by the air pressure change and the dwindling snacks and new activities I saw the storm brewing and my eyes welled with tears. I knew it was coming. It started with aggressive kicking, and then moved on to throwing shoes, a sippy cup (or anything that was not strapped down). These flying objects fell on those sitting in seats that were rows ahead of us...and neither shoes nor sippy cups feel good when they unexpectedly drop on ones head or face. Food was everywhere. There was no way to provide comfort to our son who was, in fact, suffering too.
Looking back there were a number of stressers - new environment, overwhelming noises, constrained space, pressure on the ears - which ultimately led to our son being afraid. He was on sensory overload and in his view, this experience was complete chaos. This fear, combined with the inability to articulate, was all expressed through rage. It took some time and therapy (as well as dollars) to understand this all. It also took time, professional help (and of course, dollars) to understand how to deal with it before we get to the "tantrum" stage. For us, that has meant explaining the schedule days or weeks in advance. Maybe providing a book or pictures on what to expect. We pack items we that we hope will offer relief to his sensory system - brush, blanket to wrap him tightly, or sound-cancelling headphones. We rub his back, put pressure on his limbs and remain VERY patient throughout the whole travel process. However, the total game changer for us has been the discovery of TSA Cares - a wonderful government program that provides support for those with disabilities. This service assigns a security agent to a family who then escorts them through the security process. No more separation of child from mom as they do a body scan + no more standing in lines + everyone is patient and educated on the disability = happy kid to start the travel process.
We just returned from vacation a week ago and we actually feel like, well, like we were on vacation. The travel experience was without stress or incident. There were no tantrums. None. There was no screaming or kicking. In fact, I don't think 90% of the people on the plane to and from our destination even noticed us (except maybe those who saw our boy break dancing at baggage claim in Florida). We have reached a milestone and it feels really good. That's the most important thing I have learned so far on this journey. Things can be hard, maybe even seem hopeless at times, but there are milestones along the way...and they are to be celebrated no matter how large or small.
For information on TSA Cares check out https://www.tsa.gov/videos/tsa-cares-screening-travelers-autism-spectrum-0, call (855) 787-2227 , email TSAContactCenter@tsa.dhs.gov.