Mixed Signals

So this weekend, I am working another respite weekend. I really enjoy working respites because it's a chance to work with kids, which is something I have missed during the fall season where we work primarily with adults. This morning, looking around at all of these sweet faces of kids with special needs, I had this moment where I thought, "I would love to teach special education and get to work with kids like this every day." Then throughout the course of the afternoon, when a six year old had such a series of temper tantrums that he smashed his skull into my collar bone, hip bone, and my chin multiple times one time so hard I saw stars, I thought, "There is no way I'm doing this. Ever." That doesn't even include the battle scars his primary counselor has to show for the weekend. Then my thought turned to the parents of this particular kid. He and his nine year old brother both have behavior disorders. I don't know that much about them, but I'm pretty sure they are not my forte when it comes to working with people with special needs. Personally, I prefer folks with disabilities that don't involve me getting hit in the face. I started to picture what it would be like to have a classroom full of kids like this every day and then felt relieved that I didn't impulsively reroute my life based on my blissful feelings this morning. I started to think how sometimes how these disabilities manifest, either positive or negative, can depend largely on their parents. And how I don't want to inherit someone else's poor parenting for 9 hours a day times 20 kids. I am not a parent and I can't imagine the challenges of having a child with special needs, but at this point in the day and in life, I don't think behavior disorders are my thing. I know people that are incredibly passionate about it and I am incredibly thank for each and every one of those people and for the countless others that dedicate their lives to these kids. As for the six year old who beat the crap out of me today, no less than 15 minutes after he cleaned my clock (when this occurred  I was simply trying to hug him and hold him until his counselor came back so they could go swimming), he came up to me in the pool, held my hand, and climbed up on my lap. Go figure. How about that for mixed signals?

Thanks, Universe

So this last week, I am not particularly proud of my performance. The best way to describe my state of being this week was "desperately tired." I was completely exhausted and couldn't seem to snap out of it. Also, my group this week was a little lower energy than the groups I'd had for the past couple of weeks. The past two weeks, I'd worked with ladies with Cerebral Palsy who, while they had more personal care needs, were genuinely happy people who were appreciative of their time here and excited to be at camp. I have come to find that folks with Cerebral Palsy are just genuinely happy people. They are nice and happy and excited and all of those things that make camp wonderful.  I am not sure if this positive outlook is associated with their particular disability. Perhaps, I just got lucky with the wonderful ladies that came into my life the past few weeks. Either way, it was pretty fantastic. This week, I had what I'd consider a relatively "easy" group, but things that shouldn't have annoyed me did. One woman asked the same handful of questions over and over and another loved to give hugs. What's so bad about hugs you ask? Well, these hugs hurt. She would basically tackle you to tell you she loved you. She also liked to touch everything that you were also touching including the spoon holding the cereal enroute from your bowl to your mouth. She also liked to elbow you in the rib cage just to say "hi." The bruises are still healing... It was one of those weeks where I kept thinking, "Tomorrow is a new day. I will wake up tomorrow and do better." And every day, I didn't. And I hated it. I feel like I wasn't my best self for the ladies in my group which is unfortunate because they each had this unique fantasticness about them. And some of them had things that were significantly less fantastic that bothered me more than they should have, but I suppose we all have those things.

Friday morning, as I was counting the hours until the start of a new week when I could officially start off on a new foot, something pretty great happened. A camper in one of the other groups who I had chatted with a few times gave me a hug. She held me so tight, crying that she didn't want to go home. The tears started coming and then I also started to cry. At first, I tried to pull away, but she didn't let go. So then I just embraced it and her. So there we sat, hugging, both crying, both not wanting to leave. Sometimes the universe gives you what you need when you need it and not a moment sooner. On Friday, the universe gave me an amazing hug from an amazing camper, reminding me that this job doesn't have an eight week cut off like it did last year in AmeriCorps and that I need to continue to be my best self for my week 12 campers as I was for my week 1 campers. Thanks, universe.

Reinforcement

This week was another "Just for You" week, a week with a one on one camper to staff ratio. This was mostly for campers with strong behavior issues or those with a high level of personal care. We had a fabulous group of five campers, all of whom were sweet and funny. A much needed change from the craziness of the last Just for You week.

The real lesson this week came from a weekend adventure-a send off for one of the counselors whose work visas expired and was leaving the country. We went to Iowa City to have dinner and hang out. Long story short, some shenanigans ensued and it reminded and reinforced my ideas in relation to alcohol. Inevitably, in every group of friends, there are the responsible ones: the ones that round everyone up and drive them home at the end of the night. As someone who didn't ever drink until I was a senior, this was a role I held throughout college and well into my adult life. I have never been the one to get completely ridiculous, drop my cell phone in a toilet, leave my credit card at the bar, and disappear, leaving my whereabouts unbeknownst to my friends. Even during a few crazy nights in grad school and during the cold winter months in Alaska where the bars were the warmest place to be when it was -32 degrees outside, I still managed to make it home with everyone I arrived with with all of my belongings in tow. As the responsible one, sometimes I envy those people and their ability to be completely free of any and all responsibility for themselves and those around them. But on the other hand, I can't imagine being on the other side of the table. I know myself pretty well at this point and I know that's not the person I ever wanted to be. My motto when going out? Don't ever be that girl you make fun of. I feel like that may also be a good life motto as well.

I never went through that"crazy get it out of your system we're in college let's find ourselves and make really bad decisions" phase in college. It just never happened. And I'm perfectly okay with that. The up side of never going through that phase? Having more time and money to travel or to do whatever I wanted to do that didn't come in a glass. I got good grades in college. I was involved in lots of activities and had time to do all sorts of things that I wouldn't have been able to do otherwise. Also, meeting other amazing people who weren't interested in partaking either. They're out there and they're pretty great. I don't judge people that choose to be ridiculous when they drink, I really don't. (Well maybe those girls. And maybe just a little.) But I am also making a choice-to never be that girl that I make fun of. And if I can avoid college bars and nights out that make me feel like I'm a hundred, that's okay too.

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.