Perfectly Imperfecta

Last week I was a volunteer camp counselor at Easter Seals Explorers Camp, before I left I had written myself a pre-camp letter. This morning I am following-up with a post-camp letter. Note: Pics will be posted later on!
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First off I was amazed by the accessibility of the camp site, Agassiz Village. Smooth dirt paths all around, ramps leading into cabins and activity cabins, even a smooth path down to the water front! But the more I threw myself into the daily routine with all of its challenges, ups and downs, small joys and victories - I came to understand that the biggest asset to accessibility wasn't the infrastructure. What made the camp experience so worth it and what helped me get so much out of it were the 50 camp counselors and staff who were there with me, about half of whom had some type of disability.
But wait for it............... the coolest part, of course, were the 5 OI'ers who were either camp counselors or program staff. The 2 'bosses' of the camp were OI'ers themselves! (And people I am very lucky to call friends). They zoomed around on their scooters and power wheelchairs making sure that every cabin was at their activity, saying the magic words that ceased any tantrums our campers were throwing, and raced to the site of any emergency even when it was late at night.

Our days were busy from 7:30AM to 8 in the evening with arts & crafts, nature/fishing, island explorations & canoe trips, camp fires, ropes course, and sports. Every day we took the campers swimming on the lake, there was rest hour to hang out in the cabin with your bunk mates, and the greatest part was that it didn't matter if you had autism or were in a wheelchair, or had some other disability - every camper was held to the same expectations: to learn new things, make new friends, participate in activities, and listen to camp counselors. Campers were awarded stickers at every meal as counselors announced who was the Friendly Camper of the day from each cabin, and those cabins who cheered the most and were most amicable got a spirit stick for the day!
As I had said before, Explorers Camp is geared towards kids who are on the spectrum of autism or who just would not have been able to participate in a 'normal' sleep away camp or even a day camp. With that in mind you can imagine all the challenges that may come with throwing a bunch of kids into a new environment and expect them to be fully engaged in the day's activities. But it was through the incredibly patience of the camp staff, our willingness to help one another, and endless words of encouragement that got us through all the tough times and allowed us to celebrate the victories and joys.

One morning was particularly tough, for whatever reason the campers in my cabin were all a bit 'off.' No one was listening, it was a struggle to get even the most compliant camper to follow directions, and everyone seemed to be deep in their own world - literally. We headed towards our morning activity, music, and two of my campers decided to have a melt down "I don't like loud noises, music isn't my thing, I won't do this..I just want to be left alone.." eventually one of them sat outside the whole time, and the other sat herself in the bathroom and refused to budge. I decided to focus my attention on the campers who were more willing to participate in the fashion show that they were supposed to be putting on, and helped the other girls choose costumes and cheered them on. We had twins, M & K in my cabin:
"Hey K look at how much fun your sister is having dancing to the music, why don't you dance with her?"
"No. I don't want to." She said in her monotone. Then looked down at the floor and curled up in a ball.
"What if I danced with you?" I asked her - determined to get her going.
There was no response, only a blunt silence and she continued to stare off into space.
After some amount of pleading and encouraging, during the last 5 minutes of the activity period I was finally able to get K up and dancing with her sister, she even tried the hula hoop and I felt like I had just coached someone through a marathon!

Though all of the campers in my cabin were teenage girls and towered over me, none of them questioned my authority as a camp counselor or doubted that I was able to help them. Even the most stubborn of them! I was never asked why I was in a wheelchair, why I couldn't walk, or why I was so small. Not only was I not questioned by any of my cabin but not even by any of the other 40 some odd campers in the rest of the camp. I will honestly say that this past week was the first time in my life that I did not feel the need to explain my presence, differences, abilities, or inabilities. The nonjudgmental environment of the entire camp was such a relief and though the kids may not have been aware of it - this aspect of Explorers Camp was definitely a huge component of the overall accessibility to our day-to-day lives.

Overall I had a lot of fun, got so much out of the past week, and my boundaries have been pushed in ways I didn't think I would ever be comfortable with. But not only am I glad that I was thrown into this new experience but look forward to participating in future Easter Seals programs as well.

“Explorer’s Camp is really your typical sleep away camp with camp fires, swimming in the lake, friendship bracelets, and sleeping in cabins…” said C, a fellow OI’er I had met a couple months ago who is in charge of Explorer’s Camp.

As she was telling me about the camp schedule, the set-up of the area, and what to expect as a volunteer counselor – I had a flashback to 10 or 11 years ago when I was in the 8^th grade:

“Mom I want to go to Nature’s Classroom with everyone else! We’re going to be living in the woods together and learning stuff, everyone else is going!” That was pretty much all I was aware of when the teacher told us about our class trip; I was 13 or 14 and only cared about doing what ‘everyone else’ was doing. It may have only been something only my classmates were participating in, but in my mind back then the entire world was doing it, and I don’t want to be left behind.

Up until then I had only ever gone to summer day camps or nerd camps (“enrichment” summer classes at the local high school). These other camps I went to ensured that when the program or class was over I would be sleeping in my own bed, and go home to my overly-attentive helicopter parents. I should also note that I was never allowed to attend a sleep over at my friend’s house; so literally, this whole going away for a week in the woods was brand new territory for my family. I should also add that during this time my fractures were unstable and occurring fairly frequently. The year before I had broken my legs four times and by the start of 8^th grade I was enjoying an injury-free few months.

With all of that in mind, I totally understand now why my parents were hesitant. Their reluctance was so much so that my mother came into the middle school and told my teacher I was absolutely not going to be attending the trip. I think it was my 8^th grade science teacher who had the joy of calming my frantically nervous mother down. He told her about the activities we would be doing, that there would be aides on hand and around me at all times; my mother resisted, she kept on spewing out worst-case-scenarios like my wheelchair breaking down, or if I broke a bone in the middle of the woods “Sandy, you know how much it hurts when you break a bone. Imagine if you broke a bone in the middle of the woods, you’d have to wait several hours before you could get back to Chldren’s Hospital in Boston.” In my naivety and stubbornness I remember insisting to her: “I won’t break anything! I promise!”

For weeks the tug-of-war between the school and my mother went on. Finally the tie breaker was decided to go to my orthopedic doctor, Dr. Shapiro. “We’ll ask Dr. Shapiro what he thinks about you going. If he says you can go, then you can go.” Although Dr. Shapiro was the guy who diagnosed me at birth, and though he knew practically everything about me – I was nervous and restless during the days leading up to the appointment: I wondered to myself, what would he say? What would he want to know? Will he say that I can go? Why wouldn’t he let me go? What if he says that I can’t go?! I am pretty sure that I had some half-dreamed up plan to run away if Dr. Shapiro said “no;” it involved my best friend hiding me in her duffel bag.

Finally the day came when we went to go see Dr. Shapiro. It was one of the few times when I went to see him without a fracture or a cast. My mother explained to him the class trip and I sat there silently watching his facial expressions. Dr. Shapiro is an extraordinarily calm and composed fellow. He takes his slow steps down the hall with certainty, and he always speaks with a reassuring confidence – so when my mother was done exasperating him with all of her “What If This Terrible Thing Happens” scenarios, he looked at me and shrugged: “Sure, I don’t see why she can’t go. As long as she stays in her wheelchair for the activities and keeps her leg braces on. I don’t want you to be doing any walking with your walker in the woods, and no strenuous physical labor in the woods – don’t go cutting trees down.”

So it was decided! I left his office ecstatic with the news, I felt like he had just taken off a spica cast that I had been in for 5 long months!

Now fast forward a decade or so later, and my parents have long ago stopped being by my side for every single decision I make in my adult life. Although no one in my family was at that meeting yesterday as I listened to the details of Explorer’s Camp -- I could still hear my parents’ frantic worries, my own stubbornness to participate in everything, and Dr. Shapiro’s reassurances. This time at camp I won’t have an aide by my side every single second of the day; in fact I’ll be one of the volunteer counselors helping the young campers instead! There won’t be anyone there to remind me to charge my wheelchair every night; no one to make sure that my hearing aids don’t get wet in the lake; I’ll be the one to help accommodate activities for others; I won’t need to ask Dr. Shapiro’s ‘permission’ or get a medical ‘okay’ beforehand; and this time instead of pleading my family to let me go, I am just…gonna go! As I was thinking about this last night I had one of those self-assuring moments where I thought yes, I have attained another aspect of independence!

Growing-Up with O.I.:

It's really easy to only think of the progress OI'ers make in terms of fractures: "oh she hasn't had a fracture in 5 months now.." or "he had a rod surgery 6 months ago and is now able to walk for much longer distances!" As in the above story I shared, it's important to note all the intangible things too!
What I didn't appreciate then that I understand now, I really learned a lot from the decision my parents helped me with in the 8th grade BECAUSE they included my doctor and me! Although my parents were initially against my decision to go, the fact that they heard me and wanted to make the safest decision for me paid off a lot now that I am an adult! I now know about the things I need to consider when I make decisions like this
No matter how ridiculous and stubborn your child might be in trying to 'make a call' in his or her life, let them! It's the only way I learned what my limitations are and how to problem-solve in 'the real world' without my parents by my side 24/7
Parents might be losing hair, sleep, and gaining bags under their eyes over the decisions their OI'ers might be making - this is probably normal (although I wouldn't know cuz I don't have kids). The best thing to do, as hard as it probably is, is to be supportive while GENTLY and QUIETLY voicing your concerns. Badgering and screaming "WHAT IF THIS HAPPENS?!" Is probably going to put distance between you and your child for the next 'big' decision
Though I don't TOTALLY know what I'm getting myself into, the fact that I am willing to take this risk AND look forward to doing it, I think, speaks volumes about how my parents raised me.

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Dear Post-Camp Self,

Another instance of gaining independence

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