Kaitlyn Quinn: Communicating in Silence
What do you mean they don’t talk or use a communication device or know ASL? How am I supposed to know what they need? What if I can’t figure out how to help them? How do I care for them when I barely know them and they can’t tell me themself? These are all thoughts that raced through my mind at orientation. The Honors College requires that your “Breakaway” be an experience that “immerses you in a culture that’s different from what you’re familiar with” and “challenge you personally” but after the first day of orientation I was really questioning what I had gotten myself into.
For my Breakaway experience I worked as a lead camp counselor at a fully inclusive summer camp for kids with special needs. This summer camp is no different from what you think of when you think about a traditional summer camp: crafts, water days, and—everyone’s favorite—field trips. The only difference is that all the kids who attended had some form of disability, which meant that some activities were altered to make them more inclusive. This camp did not turn anyone away, so there was a wide range of disabilities, which meant you had to be ready to think quick on your feet if something was’nt working for your campers.
One camper in my group had a particularly complicated diagnosis that caused him to have very limited control over his body except for his eyes. He used a wheelchair, had a constant feeding tube, and was fully dependent on his caregivers. These factors limited communication and made it difficult to know what the camper wanted or needed, but that did not stop us from including him in every activity possible. This also meant that there was a lot of trial and error with the camper, trying to think of new ways to adapt activities that engaged him as much as possible. In the beginning, there were many things we tried that we could tell did not make him happy, but as I began to bond with him, I felt like I was able to read him better and make adjustments more effectively. However, this bond is not something that came quickly or naturally to me.
Prior to this camp, I had over 4 years of experience working with kids with special needs and thought I had a pretty good idea of what it took to be a caregiver for someone with disabilities. But never had I worked with a kid that was fully non-verbal and had no other form of communication. One of the things I loved the most about working with special needs kids was the pure connections I got to form with each kid, but I had always done that by talking and interacting with the kid. How was I supposed to form a bond if I couldn’t talk with the camper?
The first couple weeks of the camp I was really struggling to feel like I was connecting with the camper. I specifically remember one day at camp, I was doing a Leaning Tower of Pisa craft with him, but I could tell he was not having fun. With kids that do not have the ability to communicate, some of the ways you can tell if they are engaged is to look at how awake they are and look at their facial expressions. During this activity, he did not seem to be awake, and his facial expression was very neutral, so I could tell he was not engaged. Then the speech therapist that worked at the camp came over to our table while I was working him and there was an immediate change in his facial expression. The therapist asked if she could work with him on the craft for a few minutes, so of course I said yes. It was night and day difference when she was working with him compared to when I was working with him. I felt so out of place.
I had gone into this job feeling like I had plenty of experience to guide me through the unknown, but in this moment, I felt lost. Even though I was spending almost 8 hours a day with him, I felt like I still didn’t truly understand what he liked, wanted, or needed from me. In all honesty, I felt like I was failing him and started second guessing my role at this camp. I specifically remember coming home after camp the Friday before July 4th and feeling so relieved that he was going to be in the hands of his parents who could actually give him the care he deserved. I knew that this was my own conscious getting to me, but I still couldn’t get over the fact that I felt like I was failing him and his family by not understanding his needs. In the same breath, I knew I couldn’t give up on him. I knew from talking with the other staff that due to the severity of his diagnosis, there are not many camps or programs that typically accepted him.
After taking the long weekend to recuperate and saying lots of prayers, I went into the next week with high hopes. Little did I know, the next day’s field trip to the aquarium would be the answer to my prayers.
The morning of the field trip had rocky start: two of my campers showed up late which threw off the group’s schedule, another camper was refusing to eat his breakfast, and one of the buses was having issues so we were down a transportation bus. However, things finally seemed to smooth out once everyone had finally got on the bus. Except they didn’t. There was an event happening in downtown Charleston, so we couldn’t take one of the main roads we were supposed to use to get to the aquarium, which caused us to be late. The aquarium also didn’t have an abundance of handicap accessible parking for the buses, so each bus had to go one by one to load campers off the bus and furthered our tardiness. By the time we finally got into the aquarium, I felt like I had already been on a field trip. But after everything it had taken to get there, everyone was so excited to finally get to go look at all the exhibits, so I knew I had to find some energy.
Campers had been given a scavenger hunt activity while we were there, so my camper and I immediately started on that. As I mentioned, I had really been struggling to connect with him. Since communication was so limited, I had really been trying to pick up on things that got even a little reaction out of him, but again just did not feel like anything I did was making his camp experience fun. I felt like I didn’t know how to talk with him when there was very little feedback. That is until I got a tip from one of the long-time therapists at the camp that this camper loved to go fishing with his dad. She told me to just try talking to him as if he was talking back to me and go from there. Desperate to stop feeling like a failure, I started talking through the scavenger hunt with him and asking him questions about which fish he thought was the one we were looking for.
Then, it was like a switch had flipped. He started fluttering his eyes back and forth between me and the exhibit. From what other people at the camp had told me, this is one of the very few ways he would communicate and that when he held his gaze that usually meant he was making a decision. Finally, a connection! I was so over the moon that I had finally found a way to connect with him. I continued to push him through the various exhibits and his face was lit up like I had never seen before. Towards the end of the day, he even cracked a smile as we sat at the otter exhibit and watched the otters spin and swim through the water. The more I talked to him, the more he seemed to interact with me, and his facial expressions got even bigger.
I know that connections are not made in a single instant, but during this field trip, I felt like there was finally that spark between us that I had been looking for. Even after everything that had happened leading up to the aquarium field trip, I remember feeling so light and accomplished leaving that day.
Looking back, I wish I had realized that just because the camper couldn’t have a conversation with me doesn’t me that we can’t “talk”. In hindsight, I wish I had just started talking to him sooner. Even though I had experience with special needs populations prior, I feel like I let stereotypes of people with disabilities get in the way of me forming a connection with this camper prior. There was nothing crazy about our interaction at the aquarium; I just finally started to treat him like any other person at camp. Thoughts, feelings, and emotions can be communicated in so many other ways than just with words and just because there was no verbal feedback doesn’t mean there was no feedback at all. This Breakaway taught me that even when I don’t mean to, I can carry stereotypes in my head and sometimes I need to take a step back and assess where my head is at before I can truly be of any help. Also, that just because I don’t succeed right away doesn’t make me a failure, it just means I might need to look at a different way to approach the problem.
Kaitlyn Quinn is a senior pursuing a BS in exercise science, with an emphasis in occupational therapy, and is also a member of the Honors College. For her breakaway experience, she worked as a group lead at an inclusive summer camp for kids with physical and mental disabilities through Pattison’s Academy in Charleston, SC. Kaitlyn plans to graduate in May 2024 and attend graduate school to obtain a master’s degree in occupational therapy.