Change of Perspective

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.

How accessible is accessible?

This weekend I went on a travel camp trip to Omaha, Nebraska. First and foremost, it was great to see my family and to show them all of the great things we've been up to here at camp. It was absolutely incredible to see my family jump right in and help out with the campers. It made my heart smile. :) Second, it was an interesting adventure into the world of accessibility. There are all sorts of ADA laws to make sure things are handicap and wheelchair accessible, but outside of parking spaces how accessible is accessible? The other counselors and I began comparing bathrooms-which ones were wide enough, had the best railings, etc. This is an odd thing to notice, but when you are travelling with seven campers in wheelchairs, these are the things you pay attention to. In Omaha, we visited the Henry Doorly Zoo which as it turns out does a pretty good job of making things accessible. We opted out of the rain forest and the desert dome in favor of attractions where the animals were easier to see with more wheelchair accessibly pathways. I have done travel camps before with Camp K, but the majority of their trips are camping in the great outdoors with campers who don't utilize wheelchairs so there wasn't much in the way of comparing accessible bathrooms. So this trip definitely helped me to look through an accessibility lens.

Pick on Someone Your Own Size

This week proved to be an interesting dynamic in our little group. We had a group of five ladies. One was mostly non-verbal. She said a few words, including her own name (which by the way was adorable). When she was upset, she would let out this screech that would get progressively louder the more upset that she was. A couple of our ladies were especially bothered by this sound and chose to voice their opinions about it every chance they got. It didn't matter how many times we explained that sometimes people express their frustrations differently, even if it was something they could cognitively comprehend, a couple of them continued to yell at her and holler at her to stop, thus increasing the noise level significantly and making it that much more stressful for everyone involved. This happened multiple times each day and each time the ladies irritated by the screaming became a bit meaner with their hollering back and their comments. I felt the need to defend our non-verbal friend and  they noticed it. One of them even said to me, "Sure, go ahead and stand up for her." I simply said, "Of course I will stand up for her. And I'd do it for anyone of you, too." It got harder and harder for me to hear these other women yell at her when I knew she couldn't defend herself.

It got me thinking about bullying among people with special needs. I am sure that many people with special needs know bullies all to well be they classmates, co workers, or heaven forbid even impatient family members. But at camp I've also seen them bully their own. Someone who is higher functioning will take it upon themselves to make fun of, harass  yell at, or even physically harm someone who they perceive to be weaker or lower functioning than themselves. I would like to think that if someone knows what it feels like to be bullied, then they wouldn't then be the bully. But I can also imagine that many people with special needs hear these unkind words all of the time so it seems only natural for them to repeat it to someone doing something they don't appreciate or understand. So I suppose it starts with those that interact with people with special needs. If they don't hear those words used against them, then they are much less likely to repeat them.

In Over My Head

I felt like this week provided a lot of lessons rolled up into one crazy week. This week, we had a one on one ratio of counselors to campers due mostly to behavioral issues. I had a camper who was self-abusive. What this means is that they harm themselves in some way (biting their hand, hitting their head against something, etc.). They do this for a wide variety of reasons: frustration, anger, being asked to do something they don’t want to do, or an inability to communicate something they want or need. My particular camper hit himself in the head and face. Hard. He had significant scarring on his face and forehead and was virtually, if not completely, blind.  And all of it was self-inflicted. Hearing his story from his staff member that dropped him off was heartbreaking. Not knowing how to manage his behavior at home, his family used restraints to tie down his arms in case his self-aggression got too intense for them to manage. He had scarring on his arms from the restraints. To meet him Monday morning and hear all of this first thing was quite intimidating. My first thought was, “I’m in over my head.” But then somewhere during the week, something changed. This camper and I bonded. He would begin to hit himself and all I had to do was hand him one of the stuffed animals he brought, tell him to hold on to it tight, and tell him, “You’re okay” for him to stop. By the end of the week, he was holding my hand and putting his head in my lap just as a reassurance that someone was there, that it really was okay. He was nonverbal, but his smiles and laughs said it all. And sometimes so did his outbursts. I came to find that he hit himself when he was angry, frustrated, or asked to do something he didn't want to do. Sometimes I also think he did it out of habit. When we sat down, often he would feel around to see if there was a wall or a railing close by that he could hit his head on. Simply putting an arm around his shoulder usually solved this problem. Wednesday I wasn't feeling well so I took the afternoon off and I found myself really missing this camper. Thursday we sat on the swing for what seemed like hours and I talked and he listened, all the while laying his head in my lap, nodding off to the rhythmic squeak of the swing. It was probably one of my favorite moments at camp thus far.

This week also had me thinking about something else: how people with special needs are viewed in other countries. My camper was Korean and it occurred to me that I know nothing about how people with disabilities are perceived in other cultures. Do they have group facilities abroad like we do in the United States? Or do people with disabilities live with their families? This is something I’d definitely like to learn more about…

This week also made me think about the spectrum of emotions that human beings experience. There was a camper in another group who was always extremely happy. She always had a huge smile on her face and was always super excited to see everyone, to hug them, or to hold their hand. I never saw her unhappy. For someone with a severe cognitive disability, I wonder how this affects their spectrum of emotion. Do they worry in the same way as those of us who worry about seemingly trivial things? Do they feel jealously if someone else is getting the attention they consciously or subconsciously crave? How do frustrations manifest? In even asking these questions, I admit I am showing my complete ignorance about the wide spectrum of cognitive disabilities  but I think it is definitely something that warrants more investigation to answer the questions being asked.

Looks like I've given myself plenty of homework on the cultural and emotional aspects of people with special needs...

If I Die Tomorrow...

This week, I had a group of three ladies who had Cerebral Palsy (CP) who were in wheelchairs and two other campers with only three counselors which was as logistically challenging as it sounds. All of the women in our group were absolutely fantastic (even the one who would be difficult on purpose...but get her hopped up on some cold medicine and she was a giggling, self-proclaimed "fruit cake"). They were all excited to be here and had a great attitude, but having only three counselors for three campers who needed complete assistance with personal care was a quite a challenge. It was the most physically demanding week I've had working at a camp thus far, but I found myself, in spite of my fatigue, really trying to enjoy my time with these ladies. And what a fun time we had! One of them, the one I worked with the most closely throughout the week, is probably one of my favorite people ever. And I feel extremely fortunate that I had the chance to spend a week with her. She was always happy and always excited, so how could I not be? Even when I was exhausted, the other counselors, campers, and I still laughed til the point that we cried many times throughout the week. This was one of the most physically demanding weeks I've experienced in recent memory, but it was a wonderful, hilariously challenging week. I had this moment on Thursday where I thought "If I die tomorrow, I'll be happy with what I did during my last day on earth" which I think is just about the best lesson I could hope to learn.

Can he do that?

This past weekend, I worked a respite weekend at camp. Respite is an opportunity for families and care givers with special needs to bring their loved one to camp for a weekend. The purpose is two fold: to help the campers have a fun weekend away from home and for the care givers to receive a much needed rest from providing 24 hour care for their loved one with special needs. Even just having campers here for 40 hours, I was able to take a lesson anyway. That's the beauty of this kind of work. Always something to learn. :) This weekend's lesson was on ability.

I had the opportunity to work pretty closely with a young man with severe Cerebral Palsy. He was pretty fantastic. I'm not going to lie. He had a great sense of humor. He was also one of those people that when you were on the receiving end of a smile or a laugh, you feel that you must have done something pretty special to earn ti so it makes you feel pretty wonderful. There was a group of  nursing students from a nearby university volunteering. Each of them was assigned a camper to work with one on one while the other camp counselor and I were there to help out as needed. I'm not sure of this volunteer's experience in working with people with special needs, but I was pretty surprised when she asked me several times at activities throughout the weekend, "Can he do that?" I thought it was an odd question to ask of a person with special needs at a camp for people with special needs. I'm sure this is a question people ask (be it in their heads or out loud) about this young man all of the time. But the beauty of it is, he can do that here. He can do whatever he wants here. We will do our absolute best to make it work or die trying. He lives in a world that I'm sure doesn't always accommodate to him, but luckily camp isn't that world. Did you know there was such a thing as adaptive golf clubs? And that there are countless art projects that can be adapted for people with special needs? It's all really quite amazing.

I also found it odd that when our dear camper left, the volunteer said to him, "It was a pleasure to take care of you this weekend." Sure, assisting with basic personal needs comes with the territory but was that our primary job here? I felt that my primary goal was to help him participate in the activities that he may not be able to do otherwise and to help him have a positive experience while he was here. In my head, providing the personal care was not our primary goal this weekend. In his file, it said he loved camp and loved being here so I wanted to keep it that way. I earned several of those smiles along the way, so I'm hoping that mission was accomplished.

This had me thinking about my own abilities. I can't even tell you how many times I've looked at something of which I'm perfectly capable and said, "I can't do it." I know I've taken for granted the fact that I can do something, but something inside me be it fear or nerves or what have you has decided that I can't when in reality that's really not the case. There's a few things in my life where I let the "I can't" get the best of me and quit on some things that I know in hindsight that I could have done. I don't believe in regret because it's those choices that led me to where I am today, but if I had it to do differently, I probably would have done it...differently.

Most recently, during our staff training, we went caving. Now for those of you that have never been caving, it's really quite an experience. We shimmied through a cave not more than a few feet high and a few feet wide for Lord knows how many feet by the light of a flashlight to get to an open space at the back in order to sit down and do some team building activities. I was very anxious about it the day before, but decided that I would try it. I was still pretty nervous going in , but the person behind me was even more so. She decided to back out of the cave pretty early, but I kept going. The element of the unknown soon got the best of me and I, too, decided to turn around about halfway in and head back. Part of me is okay with this decision, but part of me regrets not completing the challenge. After all, it's not that I can't. I can. I'm perfectly capable. Guys who weight 150 pounds more than I do and that are a foot taller have made it through this cave so I really have no excuse. That goes for most things, really, and is the lesson I'm glad I was able to take away from this weekend. I'm hoping I'll have the chance to go back and try my hand at the cave again. Next time, I will bring extra batteries for my headlamp in order to provide some additional peace of mind. :)

An example of ability that makes me come out on top is when our group climbed the "Angle Dangle" during our staff training. The Angle Dangle is this ropes course element comprised of 4x4s at wonky angles attached by cables on each side, like some kind of crazy ladder. The "rungs" were about as far apart as I am tall, so it was a bit challenging and there were times when I didn't think I would physically be able to do reach the next beam and pull myself up, but somehow, I did it. It took awhile and I had lots of bumps and bruises to show for it, but I proved to myself that I could do it. The physical ability level was there. It just took my brain awhile to realize it. So in the future when the thought "I can't" starts to creep it's way in, all I have to picture is that volunteer asking, "Can he do that?" and then remember the smile on the camper's face when he did do it. I only hope I can be as cool as him some day.

Faith in Humanity: Restored

This weeks lesson is on keeping your faith in humanity. I felt a little sluggish this week (I'm going to blame it on Baltimore), but my group of gals was completely fantastic so overall it was a great week. I have one camper who this is her first week at camp. Everything to her is new and exciting. She has so many questions about all of the activities and is absolutely excited about everything. And I mean everything. I have never seen anyone so excited to go canoeing or do archery in my life. Her smile is so bright and her laughter is contagious. She has the biggest heart of just about everyone that I know, making pictures and crafts for all of her friends and family, keeping none for herself. She made a craft for one of the new AmeriCorps NCCC counselors that just joined us and also drew a picture for my mom. (How great is that? Last time I drew my own mother a picture was well over two decades ago.) If that doesn't tell you how great she is, nothing will. She also wants to talk to everyone and to know everyone's name. To have this camper call you a friend means you must be pretty great. She is a fantastic camper and I wish I would have appreciated that more during her first four days here. Good thing tomorrow is Friday and I still have one day left with her. :)

At our weekly dance tonight, one camper (who happens to be in a wheelchair) asked one of our gals (who also happens to be in a wheelchair) if she'd like to dance. And dance they did. The nurse's aid wheeled our lady right up next to him and he spent the next half hour moving the tray of her wheelchair in order to move her chair back and forth, bobbing his head to the music. Watching these two "dance" brought a tear to my eye and definitely restored my faith in humanity. There is this basic human need for us to connect with another person, even if it is two people sharing a space on the dance floor. I'm just fortunate I was able to share a little bit of that space with them.