Showing posts with label Easter Seals. Show all posts

Back before my memory was fully functional I belonged to an Easter Seals swim group. A group of kids with varying disabilities, a parent, and sometimes their siblings would get together once a week to swim and do water-related activities. It was really during this time that my love for swimming and being around water began. The staff and volunteers at Easter Seals were equipped and trained to work with multiple disabilities, the point, from what I remember, was to emphasize the therapeutic benefits of being in a liberating and "weight-less" environment.
And while I don't remember the specifics of this swim group, I do remember that it was one of the few times (if not only times) where I was immersed in a 'level playing field' with other kids my age who were also disabled. Some may have had tubes coming out of their stomachs, some may have also had O.I., others may have had surgical scars down their backs or arms, there were arms and legs that flapped uncontrollably, limbs that curved in every which way, necks that struggled to hold up heads.. but somehow, in the water, none of that mattered.

I remember that I was excited to go to the swim group each week. I looked forward to changing into my bathing suit at the Marriott Hotel where it was held, I couldn't wait for my mom to blow-up my Little Mermaid themed swimmies for my arms. I absolutely loved feeling free alongside them, with the other kids who, like me, couldn't conceptualize what it was we were so thrilled by - but we just felt it and through the bubbles we just knew what a difference being together in the water made.

Years passed and I grew-up, funding was cut, I fell out of my high chair and wound up in a body cast for half a year - several events led up to my slow phasing out of the Easter Seals swim group. By the time I was in middle school my parents were unable to find an Easter Seals swim program for me, so enrolled my older brother and I into swimming lessons at the local YMCA.
My parents understood the risks they were taking. The class would be taught by a YMCA staff person who probably didn't have any of the same training as the Easter Seals swim program teachers did, my parents also understood that the kids in the class would be 'normal.' I'm sure that they told me all of this and in my 11 year-old way of understanding things, I probably just shrugged it off not understanding the implications of what any of that would mean. In my mind I thought I go to a school with all these regular kids so what's the big deal with a once a week swim class? I found out soon enough.

"Okay everyone we're going to start off in the shallow end of the pool..." The instructor said. And with one hand along the wall the entire class began strutting down to the other end of the pool. I sat there on the pool deck, uncertain of what to do, and feeling incredibly vulnerable in too many ways for me to count. The instructor looked at me and asked if he could pick me up and carry me down to the other end of the pool. I shrugged and nodded.
For the rest of the lesson I remember wishing that I had more clothes on than just my bathing suit, wishing that my mother had been allowed to stay, shying away in terror into the corner when we practiced our kicks. When the class was over we had 10 min to ourselves for what was called "Free Swim." Kids jumped out of the pool, grabbed at kick boards, noodles, diving rings, and squirt toys and plunged after them.

"What happened to your legs?"
"How come it looks like you have two knees on one leg?"
"Why is your chest bone sticking out like that?" 
"Why did the teacher carry you?" 
Before I knew what I had gotten myself into a small group of kids had surrounded me. I hadn't come to class in my wheelchair. Hadn't been allowed to explain anything as I usually did at the start of a school year. I was just a kid, naked in a bathing suit - and O.I.'s classic symptoms stuck out like sore thumbs.

The point of this story isn't to throw more distance between the 'disabled world' and the 'normal world.' In fact it's to do the exact opposite! Those years (yes, I continued those YMCA swimming classes..) that I spent in those classes allowed me to literally grow tougher skin. Albeit it may have been somewhat brutal and a load of reality for an 11 year-old to handle, but it's something my parents could never have taught me because they're my parents. It's not something any amount of teasing from my brothers could have taught me because they are my brothers. In school kids are not as nearly naked as they are in a swim class, and I was usually always around the protective wing of an aide. It took total strangers, peers, and a level playing field that was provided by the water in order for me to truly understand what it means when I said to them:

"My bones are fragile, I was born this way but I can do everything you guys do as long as it's in the water. I'll race you to the other end?" 

This week I got back from the Easter Seal's Explorers Camp in Maine and hit the ground running with loaded entries! Miss any of'em? Check them out here:

• Monday: I started the week off by writing a Post-Camp Letter to myself summing up my week away

• Tuesday: It wasn't until recently that I thought about how my self-image has changed over the years. In this 2 part series post I wrote about my self-image from childhood to high school

• Wednesday: Part 2 of "My Evolving Self" was a tough entry to write but an important one nonetheless!

• Thursday: Originally written in 2003 by my 10th grader self, it was then published in the OI Foundation's Breakthrough! "The view from the bottom..."

• Fracture Free Friday: The line between staying safe but having fun can be a difficult one to manage. This week I give tips on how to make the decision process a bit easier! 

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.

Hey everyone, I had a great experience during my week away and I hope you enjoyed the posts from this week. Next week I've got an exciting announcement and will write a more detailed entry about my time in Maine at Explorers Camp! If you missed any of the posts while I was gone catch them here:

• Monday: Before I left for camp I wrote a pre-camp letter  where I shared my excitement for the adventure to come

• Tuesday: In the process of writing this blog I have found that I've been unintentionally giving advice about what I would do if I had an O.I. child

• Wednesday: This was an entry where I could share a bit about me, thanks for the questions!

• Thursday: There are times when P.T.'s can be like physical terrorists to me! But in the end I have come to learn that rehab time is vital to the healing process

• Fracture Free Friday: This week's question dealt with young children who find my appearance to be a little "off" or different. What do I tell them? 

All packed & ready to go!

As I am getting ready to pack for camp there are a thousand questions poking my brain, dancing around my head with sly little smirks on their faces -- like they all have some huge secret that I don't know about. Usually I would be annoyed but this time I don't mind, instead of annoying me, this time around the unknown is exciting and it's also one of the few times in my life where the unknown hasn't cast a long shadow of fear!

As I am packing for the next five days this is what is going through my head:

"Why do I own 12 pairs of jeans?? This is absurd! And how did I pick-up so many free t-shirts from those non-profits that I worked for and interned with?! I literally have an entire wardrobe of idealistic slogans and calls to save the world!
I have no idea what I'm getting myself into as a camp counselor but that's okay. I am telling myself it's going to be fine because I will fall back on my love of helping others, of working with kids, of helping others face challenges, and I hope I will be laughing throughout the entire week. Yes, even when that huge creepy crawly comes near me in the middle of the woods in Maine - I will laugh. As opposed to screaming like the pipsqueak that I can be... okay, I will try my hardest not to scream.

Seriously though:
I am most curious about the group of kids that I will be working with. The camp is geared towards kids who fall somewhere on the Autism spectrum (some have other disabilities as well) -- and I'll admit that I have little to no experience with working/camping with kids with Autism. But I have been assured that no prior professional experience was needed so what can I say? I really am just a sucker for adventures and mystery! Usually I would have done all the research, talked to my friends who were Special Ed majors in college, or thought about various scenarios and how I might react - but not this time around.

From what I know of Explorer's Camp it seems to be just like any other mainstream camp but with the flexibility in the schedule, a and day-to-day routine that works with the various challenges the campers may face. Whether it's extreme anxiety, difficulty following directions, or participating in group activities... ultimately I get the sense that at Explorer's Camp it doesn't matter what the challenge is, the camp works for and with the child. How I wish the real world, the world beyond Explorer's Camp, beyond the next five days that I will experience could function like that always! Imagine a society that works for and with any disability! It almost sounds like a vacation from my usual routine! Instead of the individual constantly needing to find ways to adapt to the everyday, this time, at least for a little while -- it will be my job to help flip their societal expectations a bit. Of course, I am not naive enough to believe that in the span of 5 days I will reverse societal expectations of how people with disabilities live their lives, but it is my hope to help someone at Explorer's Camp believe that it just might be possible."

So that is what is going through my head and I can't wait to update my readers on what my experience was like when I get back. In the mean time, I hope you enjoy the rest of this week's blog posts while I'm away!!

Rays of shine,
Sandy

Just in case you missed any of the entries from this past week, here's a quick sum-up!

• Monday: Although my academic adviser in college was in a wheelchair, we NEVER talked about disability 'stuff.' But I'm getting better at it though: It Doesn't Need to be Awkward

• Tuesday: This was a fun entry to write! We've all been asked some head turning questions, these are the ones in my Idiotic Questions Hall of Fame (Responses included...)

• Wednesday: In 8th grade I begged my parents to allow me to go on a class trip in the woods. Now, more than 10 years later I'm going to be a volunteer counselor at an Easter Seal's Camp later on in the month :-) 

• Thursday: There are plenty of times when the "standard" accessibility just doesn't work out for an OI'er. I have learned to be handy and creative about my accessibility options 

• Fracture Free Friday: Just because I had a cast my Phys Ed teachers still had me participate in gym class. My experience in gym throughout my schooling involved a lot of "tough love." 

• 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.