This week I was in a group with one other counselor and two campers, one of whom required a really high level of personal care. Even though she was in her 60's, her mother sent very detailed instructions on everything from feeding to what she would like to buy at the camp store. Upon reading the pages and pages of step by step instructions, this whole thing seemed like a daunting task. This was a small, frail woman with very severe Cerebral Palsy. While the other counselor in my group was her primary counselor, most times it took the two of us for all of her personal care activities. Meal times were the hardest for me at first. She has dysphagia, which means she has a lot of trouble chewing and swallowing. She also had a cold so this made chewing and swallowing while she coughed extra challenging. Having someone cough up half their food back in your face after almost every bite is not for someone with a weak gag reflex. I remember this was an incredibly huge challenge for me with one of my campers last summer. His coughing and gagging during meals was so severe, I was worried he was going to choke after every bite. I started eating meals after our scheduled meal times just so I wouldn't have someone else's food coughed back into my own. So I was pretty happy that I had evolved enough as a counselor to be able to share a meal at the same time as feeding this particular camper. At first, it was pretty challenging and I considered taking the same approach as I had last summer and just coming back and eating a meal after the scheduled time, but by the end of the week, I realized how incredibly special it was to be able to share this one on one time with this pretty amazing lady.
She was unable to speak, so she used a Pathfinder-an electronic communication device where she could tell us what she was thinking or what she needed. She told the device what to say by selecting the words with a mouse that she controlled using her head. It was programmed so she could say anything from "I need to be adjusted in my wheelchair" to "My favorite music is Elvis Presley." Anything she needed to say, she could say using this device. The whole technology is really quite amazing. If we had a yes or no question, she would answer us by blinking for yes and looking away or not blinking for no. It is sometimes difficult to figure out how much folks who are non verbal can comprehend, but despite her inability to speak, this woman understood absolutely everything. She was sharp, witty, and really quite funny. Sometimes she would even tell her device to say something completely unrelated in order to just throw us off like "May I have a cappuccino please?", "I'd like to drive myself," or "Don't forget to charge my chair" when she was using a non-power wheelchair. On the last day, she started to cry several times, telling us that she would miss us and that we were doing a good job. Although, I wasn't her primary counselor, it was still really hard to say goodbye to her. Her staff sent a notebook with her so we could write about the things she did each day and about all of the pictures she took. The first thing I could think to write in her goodbye note was that she was what camp was all about and why this place was so special. In her everyday life outside of her home, I'm sure many people never take the time to really listen to what she has to say, to hear her jokes, and to just spend time with this amazing person. Even just thinking about it now makes me emotional. She is such an amazing woman and I feel so fortunate that I had the opportunity to spend the week with her.
The other camper in our group turned out to be one of my favorite people ever. She was so sassy and so incredibly funny and all without really ever speaking more than a few words. All in all, it was a fantastic week spent with two fantastic ladies.
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