....to do anything in public with a child as involved with autism as ours. As I plan a memory-making trip to Iceland for Greg, I wonder if it is the right time. We had two outbursts this week just in our ordinary lives, and the potential for crisis looms whenever we take Greg out of his routine. We tell time by his routine....
First crisis? It was unavoidable. Greg came home from work on Tuesday, laid out his clothing for Wednesday and we left for the gym. About ten minutes from home, he started to repeat, “Closet closed.” Now if I were smarter, I would have turned around, driven home and checked out the problem with his closet. Instead, I was trying to get to the gym to stick to our schedule and thought Greg would work through his concern. In hindsight, I‘d known that I might be creating a situation when I responded to Greg’s fixation about his work shirt not being in the hamper by sending him back upstairs to see that I had, indeed, put the shirt in the laundry basket. He took his concern to new heights, uncertain about whether or not to close the closet door.
Jay and I were together in mind and spirit that day. As Greg was preparing for a melt down, Jay talked with him. I remembered that I had a mild tranquilizer in my bag and ran to my locker. Jay got on the treadmill next to Greg and walked and waited until the pill began to reduce Greg’s stress. By keeping up a conversation and joking with Greg, Jay was able to diffuse the situation.
I forgot that Greg has anxiety when asked to do something independently. Now, in Iceland, if we remember that, we should be OK.
Order to self: Do NOT ask Greg to do anything independently.
Who am I kidding? As if Greg’s OCD issues, his anxiety issues and his need for routine weren’t enough to keep us from taking the trip of a lifetime, the reader must address the parents’ shortcomings. Simply stated, we don’t communicate! If we can’t navigate the simple skill of communication around here, how can we ever navigate a volcano, geyser, lagoon and other sights and sounds of a foreign country!? Our trips, to date, have been Niagara Falls, the Grand Canyon, Disney World and the beach. All in the United States where English is spoken. We know the restaurants here and can deal with whatever happens. In a hotel, we can complain to the higher ups that our son was promised a room with a falls view and hope for a new room. This happened, of course, at Niagara Falls. We can see when a tantrum is coming and get out of Dodge, if necessary. However, Iceland? It’’s a foreign country. Where can we hide? We can’t just go home in a crisis. We must FLY! Are we crazy?
Note to self: Study escape routes in case something goes wrong in Iceland.
Back to Communication. As Jay ages, he is losing his hearing and his concentration. As I age, I am more impatient and less likely to repeat myself more than 3 times about the same topic if Jay says, “Huh?”. I also have a short memory. I’d forgotten that whoever Greg goes with to any location, he needs to stay in that vehicle until the trip is completed. So when we left the gym yesterday and I yelled to Jay that Greg wanted to go home in his car, (we had two cars at the gym), I waited for an answer, and got none. Greg was already following Jay! Greg looked confused, especially when I hesitated. Doom. I figured Greg had gotten into Jay’s car, but it was dark and the lot was full, and I lost sight of him as he maneuvered his way through the lot. There began my frantic drive through the streets of Lebanon until I saw Jay’s car, but saw no sign of Greg’s hat or head sticking up at shotgun! I called and called by phone, with no answer. I even beeped my horn repeatedly, hoping Jay would hear it.
Could Jay have accidentally left Greg in the parking lot? I panicked and drove back to the gym, expecting to hear Greg screaming in the parking lot because we’d left him behind. I hoped that someone who knew autism would be with him.
I did not see Greg. I drove up and down all lanes of the lot and looked inside Planet Fitness. I checked my phone to see if Jay had returned my calls and was frantic to see that he had not, because, remember, he is deaf and doesn’t hear his new Samsung that I made him buy for emergencies. A harrowing trip home, for sure. What I didn’t know was that Greg was torturing Jay with his relentless questioning, “Where’s Martha?” Greg, once he makes a decision, then regrets it and perseverates about it. My anxiety plus Jay’s deafness does not make great communication.
Reminder to self: Always require the listener to offer an answer. Double check each and every communication.
How will we manage in Iceland? We have calming meds for Greg, but they take time to work. As families of children with autism know and experience daily, disaster awaits, often catching a family unprepared to deal with the ensuing tantrums, screams and other irrational behaviors.
We cannot stay home and live in a bubble, however, never experiencing life’s journeys for Greg. Greg deserves to have memories of some of the wonders of the world, and it is our job to make that happen. So, we will pull ourselves together, organize the trip the best we can and go. Hopefully the Icelanders know autism like we know autism and welcome us with open arms. If not, I’ll hand out cards introducing them to this blog.
Years ago, I received invaluable advice from a worker in Oregon when I took Greg out there for a hearing treatment. I asked her if I should take Greg sightseeing during our free afternoon even though he was having lots of stress and her reply? “Martha, he is going to have stress back in your hotel, also, so you might as well go, enjoy Oregon’s waterfalls, forests and snow and live your life!” Sage advice which we have taken to heart. Just need to remind ourselves once in awhile to get out there and live so we don’t become reclusive with our special child.
The world is changing. People with special needs are more welcome everywhere. Positive comments are far more common now than negative ones. Once people recognize that our son is special, they are on board. Yes, it takes guts to journey into the unknown. But the unknown sometimes brings a new look at why we are here on this earth, to enjoy the gift and see the sights.
Reminder to self: Book a nonstop flight. Greg likes to get where he is going without having a layover!
Image from Safari: Nomadic Matt, 2014
We have guts, and with luck, will see this!