In November of 2017, our family took a long-planned trip to Disneyland. That trip, and the extensive work we did to help Tony prepare for it, is mostly a topic of a future post. I suspected (translation: totally knew it) we could be in for a few challenging moments given his sensory differences. However, I had built an extra two days into our hotel time to do public therapy exercises with Tony in Downtown Disney before we ever went into the park, and we always pick slower times of year so there are still some quieter areas of the park to walk with him in, so I felt confident we should be able to work through the bumpier spots without being too disruptive.
Truth be told, the hotel room was the last place I was expecting to have problems that would be upsetting to others. He had been successfully sleeping 7-8 hours most nights for well over a year. Just a few days before the trip though, he got his first loose tooth. As we discovered, when he has a loose tooth he will sometimes wake up when the Ibuprofen wears off…and for this trip, that meant about 3:30 a.m. California time on the first day. I noticed he was his usual tornado of movement, running back and forth across the floor. He was being quiet enough, but I was concerned about being respectful to the people below us with the sound of the running. So, I put him in the bath and began getting him ready to go outside. At this precise moment, we got a knock on our door.
The couple below us was not happy about the running, called the front desk to complain, and they sent up a security guard to stop us presumably from reenacting Maleficent and her minions throwing a raucous party. Team Disney has long ago heard my thoughts on this: I felt this would have been much more appropriately handled with a call to our room first. I tried to briefly explain Tony’s situation and his capacity to comply with sitting quietly at that time (none, not even for movies he loved). He said he had a kiddo with a rare genetic disorder (Prader-Willi if I am remembering correctly, which is certainly not an easy path for a family to walk together), that he understood (but looked dubious none-the-less), and told me to basically do what I could to better keep Tony under control and eliminate the disruption. The only thing we could do was what I was already in the process of doing- remove him from the hotel.
A lot of times people think when they hear my descriptions of Tony’s challenges or deficits, as they were and as they currently are, that I’m exaggerating or just trying to make excuses for an inadequate effort on my part- until they actually see it or experience it over a period of time for themselves. If I could play my memory of all our experiences for you like a movie, even that wouldn’t be enough to bring true understanding. To really know the depth of this situation you would have to live it. And that would still only be one-sided. Tony’s full story about how he experiences the world remains mute but for the flashes we see through his reactions.
Anyway, we were told by a staff member at the front desk that we could bring Tony back into the hotel after 5:30 on mornings where he woke up early. So, all but one day of our trip either Andy or myself was walking our sweet son outside for a couple of hours under the fear of being kicked out. This was the experience that led to the decision to send just Hannah and Andy on her trip to see the ocean this past autumn. When a trip is important to her, or necessary for Andy’s job, we’re not willing to risk being asked to leave because of the unavoidable manifestations of Tony’s conditions.
As you may recall, Tony did not react well to the overnight camping trip Hannah and my honey took in April of 2018. This was the first time in Tony’s memory that we weren’t all staying at the same place together. He stopped eating, drinking, and communicating on his device- all of which is quite worrisome. This was a more immediate concern because Andy had four days of training scheduled out-of-state just three months from then.
I brainstormed, I planned, and then I went to work. We increased viewing of one of his favorite Daniel Tiger episodes featuring the song “Grown Ups Come Back.” We talked about Andy’s upcoming trip much farther in advance. And, this last part was key: We began having Andy skype with Tony and I before he left work to come home. We would choose differing topics and sing different songs (Andy sings bedtime songs to our little man most nights, so we wanted him to be able to do this via skype on his trip) so that Tony could recognize this wasn’t a movie of his dad, and then we would point out how Andy had come back when he walked in the door.
By the time the training trip came, Tony still wasn’t thrilled with skype, and he requested mostly junk food, but he ate and stayed calm up until the afternoon of the evening Andy returned. When we skyped with Hannah and Andy on their trip, Tony actually smiled briefly and waved at them through the camera when prompted (no prompt = no wave because of his deficits in social communication). The success of these strategies was a huge relief, because they will prevent a decline in our little man’s health for unavoidable short-term separations, and may be useful for someone you know and love.
While what got us in trouble at Paradise Pier was something that certainly should be expected to happen from time to time with any normally developing kiddo, the reality is that Tony does have some behaviors (that did not happen during the hotel portion of that visit) which could be more legitimately disruptive were they to occur. In the upcoming months, in an effort to help Tony function more smoothly in hotels, we’re going to be expanding some of our public therapy modules into staycations. Emily and I will work with Tony during the day, and if he gets upset at night, I can take him home without bothering anyone. As with everything we do in the public arena, the progress will happen at a pace that feels comfortable to Tony, who every day is doing the very best he is capable of.
