A few weeks ago we were asked to participate in a video social story for the fragile X clinic here in Boston. The clinic wanted something they can share with new patients to help them with their first clinic visit. It’s quite a good idea, isn’t it?
We were not their first choice. While they wanted it to be realistic, they didn’t want it to be too real, if you catch my drift. Unfortunately for them, everyone else turned them down. We were going to decline as well but, once we established that they understood that if we used Monkey it would likely be very real and that they were going to do voice overs1, we caved because it is a very good idea.
I then spent two weeks breaking out into a cold sweat and nearly vomiting every time I let myself think about it. There were many times that I wanted to back out but we had made the commitment and they were counting on us. So. I sucked it up.
On the morning of the filming we were running late…which is the perfect way to start off an already sure to be stressful day! After we arrived at Children’s Hospital we met with the whole crew plus the clinic coordinator and the clinic director. Already this visit was much different from our normal clinic visits. I mean, we hardly ever have a camera crew these days. Cutbacks, you know.
Monkey did really well or the first 10 minutes of us standing around and chatting but then he began to get antsy2. We decided we had made him wait long enough and finally got down to work. None of what we were asked to do was unusual, it was the same things we do every time we go, but we had to do them multiple times. For example, we walked up the stairs 3 times before we headed toward the elevators.
I had been really worried about how Monkey would handle all of this and for a few minutes I thought we had just wasted everyone’s time. He wasn’t happy, he didn’t want to do the same things multiple times…until we finally got to the first set of elevators. They asked us to ride up and down several times and Monkey approved. Heartily. That seemed to break the ice for him because after that he did exceptionally well.
He even began interacting with the videographer, Adam. He was fascinated by the camera and enjoyed helping Adam set it up and break it down between locations. Now that he was fully warmed up he even started to ham it up a bit. When we had to film the check-in process he was greeting the receptionists and asking how they were doing. When I sat down to fill out forms he asked for his own pen and paper.
The one thing that surprised me most happened when we were talking to the OT. She asked us a few questions to give an idea of how the OT visit starts and while we filmed this, he sat in a chair, by himself, and quietly played with the bristle blocks. We were floored!
Of course, the whole experience wasn’t that easy. He had plenty of moments when he whined about what we were asking him to do and after 3 hours he was D.O.N.E. We tried a break and a snack to no avail. They assured us that they had enough film of him, which was good because they were not getting one more second of snot free film. That would have fallen into the category of being too real for sure.
We were all a little stressed after we left and though we had promised Monkey a ride on he Green Line as a reward he was in no shape to collect. We all went home and had comfort foods in our PJs and I even grabbed a nap.
I’m not sure how long it will be before the video is done. Monkey pretty emphatically does not want to watch it. I agree with him but curiosity will win out in the end. I’m hoping that they really did capture enough of the reality of clinic visits with a child with fragile X. I would hate for a new family to watch this and think, “Yeah, right!” but I don’t really want them thinking, “Who let these idiots in?” either. I guess we’ll just have to wait and see!