In 2012, my daughter came to me with frustration, because she was struggling in a class. She said she needed a wealth of resources for research in order to do well on her project, but unlike other children who picked local venues, my daughter had chosen one out of state. “Where?” I asked her. The answer changed my mood, and brought an instant sparkle to my eyes. “Broadway,” she answered. I smiled, because New York is a place that holds great emotion in my heart, having studied at the American Academy of Dramatic Arts in Manhattan, and having a penchant for “the Arts.”
Personally, I love to travel; but, at that point in life, I had never wanted to take on the enormous responsibility of traveling alone with two children, one severely autistic. My son’s behaviors were as unpredictable as a roller coaster. Making it through the plane ride would be a huge accomplishment for us all… “Behaviors” vary and change (over time) for most on the spectrum. And sadly, are often uncontrollable in autism… unlike some children who voluntarily present with behaviors. However, to an onlooker with no knowledge of autism, there is no added empathy. To them, a behavior is symbolic of a “brat” child who won’t listen to their parent or to others, it is a reflection of bad parenting. At that time, my son’s behaviors consisted of hitting, kicking, biting, spitting, and elopement. The duration could last for up to 5 hours per episode with little or no break, and having multiple episodes a day. Then add on his other diagnoses of Seizures, Tourette’s Syndrome, Sensory Processing Disorder, Severe Receptive and Expressive Language Disorder (I’m sure I’m forgetting some!) and you may get an idea of why I hesitated to travel alone with the children, thus far, or why I may ever want to travel again.
I mulled over the seemingly endless possibilities of doom that could come to be, then decided this impromptu trip may be a blessing in disguise. So, I set my heart on going, channeling my inner strength and and focusing my mind on all things positive. In the interim, I went to one of my son’s doctors, and requested she prescribe him some type of sedative. If I were presented with the worst type of challenging behavior, I, who typically does not believe in giving prescription drugs, would make an exception for the greater good. She was a family doctor unfamiliar with the complexity of autism. She prescribed an antipsychotic drug, which sounded a safe bet for me to be able to manage him in a new environment, when any type of change could bring out a worrisome amount of behaviors on any given “normal” day.
I made sure to prepare his mind with lots of “Social Stories” that would set up expectations and positive behavior and social skills. I gave him a pill, prior to the flight, thinking he could sleep through his first plane ride. However, he was always fascinated with airplanes, and was quite excited for our trip, so he was wide awake. He is primarily nonverbal, but can communicate in words/short phrases or sentence fragments.
“Christopher scared,” he said, his body shaking nonstop. And, my daughter, who was normally the thrill seeker, was a bit scared, too, having had a recent life-threatening fall… So, we did a three hand huddle… I sat in between the two of them, and they both hugged me with all their might for the majority of the flight, and again with the landing. I closed my eyes and prayed for the strength to make it through the trip. We made it safely through the flight, but to the detriment of us all, the pills backfired. In a lot of autism cases, which a Biomedical doctor of my son’s later explained to me, certain antipsychotic medications actually have the opposite reaction and cause the individual to have a psychotic breakdown. And, this is what happened to my son. Unfortunately, I had no clue what was happening, and his condition was deteriorating by each new day. The final day before our flight home, we planned on seeing a Broadway play, and he had a fit of hysteria so severe, during the performance, that an ambulance was called. In the ambulance, he seemed to relax, and they left it up to me on whether or not we should go to the hospital. My son seemed better, and was able to voice two requests: “No hospital” and “M&M World.” Now, for him, M&M World was the highlight of our trip, so I succumbed to his wishes. But, as we exited the ambulance, a rainstorm ensued. Fortunately, they let us have some of their white bed sheets, which we used to cover our heads with and speed walk to the M&M store, which was not far from the theatre and only a very short walk to our temporary home at the W Hotel.
My daughter was heartbroken that we had to leave in the middle of the performance, and I was heartbroken for her. But what could I do? There was one of me and three of us, so I had to put the most serious/critical concerns/needs first. My daughter cried from frustration and upset about not being able to finish the musical, because what little she saw caused her face to light up like a Christmas tree. I tried to stop the tears that escaped my eyes, for not being able to “do it all” alone, but it was not overtly noticeable as we were caught in the worst mini rainstorm ever, and water pummeled our faces like rocks.
When we finally made it to M&M World, I felt happy to give my son some small respite of peace from the madness he had been experiencing. We had determined, in the ambulance, that the new meds were the trigger for his unmanageable state of psychosis. However, multiple doctors felt if I stopped the pills that he would return to what was his “normal” state as soon as the remainder of the drugs were out of his system.
To those who don’t know me, a glance at the picture of the three of us being hugged by a life-size M&M seems nothing more than a snapshot of a random family trip. However, when I finally did make it home (with one more trip to the ER later that night) and lots of drama that followed, I felt that I/we had made it through the worse possible scenarios. And, since that first trip, I made a vow to treat myself/us once a year to a family vacation/new destination.
Thanks to the staff at the W Hotel for their prompt and pampering attention/accommodations, and for the assistance from those at the Mary Poppins Show on Broadway.