Memories!!!

     As I was heading out of the doctors' office, I was stopped in my tracks by my neurologist. She had a piece of paper with CAMP CHAMELEON written across the top in big, bold, black letters. She asked me if I had ever been away from home before, which I speedily replied, "I've never been away from home except to sleep at my babysitters house". Wow, is that an awful statement to make, but at the same time I was only about eight years old.
     "This is a two day overnight camp just for kids with epilepsy", my dr. told me. Then I scanned over the flyer and saw two neurologists on the flyer who would be my medical providers for the weekend. They would monitor my dosage of medication, give it to me and take care of me if I had a seizure. I looked down farther on the list where it described the activities we would do: fishing, boating, archery, swimming, arts and crafts, games and so much more!!!
     Three months went by and my mother had filled out the form for camp and sent it in. It was time for a check up with my neurologist again as I was being monitored very closely. At this point I would still have one more grand mal seizure that would occur a year later unbeknownst to us, but she also monitored my cranial nerves, balance and many other things. She actually even helped my parents find a temporary diagnosis for my "issues".
     "The camp is only two days, but now you have to wait to see if you get in", I remember hearing come out of my doctor's mouth. Those words made me feel anxious on so many levels. It made it sound so official that I would be leaving my mommy and daddy for a whole weekend. At the same time I felt nervous that I wouldn't make the cut-off and that there wouldn't be enough room for me at camp. I didn't really know what to think, but I knew everything would be okay in the end.
     That following may, it was actually the 31st, I took the long drive up to Danville to see my eye doctor who would later perform surgery on my eyes. He also monitored my eyes and my muscles carefully. It was on the way to camp, so why not stop?
     Early that afternoon, we arrived at camp and the first thing I remember seeing was a swimming pool. I had no idea they had a swimming pool and thought we would do all our water activities in the pond. Boy was I impressed. I hopped out of the car, grabbed my bags and headed over to the check-in tables where my very own doctor had greeted me and took my pills for me.I was still a little bit nervous, but when I walked into the main building to start camp, I was ready to party.  They had stations set up all over the room with crafts and activities to do. I remember painting a horse head since it was circus theme. Later we would at a long stick to the back so that I could put up in my front lawn. A little while later we went out to play "kickball" which basically meant kicking a ball around, but it was fun.
     Once everyone got to camp we had a little clown show and someone made me a balloon animal. Once we were done with that we went outside to play some relay games. I remember spraying shaving cream over our counselors head and then trying to through chips on them. With my perky little self, on my down time I would walk up to ever kid and ask them there name, age, and favorite color in Simply J fashion. One of the first people I met was another person with the same name as me. From that day on I knew I was meant to be his buddy. He had the same name as me and he was just so sweet, but struggled so much.
     During our week at camp we did get to go swimming. It was one of maybe two or three years that we actually got to go swimming since it is always so cold out. Other times we would go in the hot tub.  I was very disappointed because I couldn't swim like the big kids so I couldn't jump off the diving boards, but guess what? I could actually go anywhere in the shallow water because everyone was really calm. At other camps, when we went swimming I could only go up to my waist with a life jacket on because they were scared of seizures. We also had a camp fire with KJ, did drums with another lady, had a hayride and a carnival at the end of the week. We also saw a dog show. I came home with an athletic bag full of goodies and I'm pretty sure it was overflowing. There was candy, juice, glow necklaces, and all sorts of other prizes. Every year our camp director would give us something special.
     These memories are so important to me because this was wear I discovered my first bit of independence and acceptance. I came home at the end of the weekend feeling like I had just reunited with family I hadn't seen for five years. I went back the next year and ended up going for ten years until I was too old. Now i'm proud to be a junior counselor and last year I even got to be a counselor for a camper that I knew from another camp.
     These exciting moments wouldn't happen though if it weren't for Camp Victory and the founders of Camp Chameleon. If you ever have time I highly recommend that you watch The Camp Victory Story which was produced by a branch of PBS called WVIA. If your a local friend and on facebook, just shoot me a message to borrow it.

     Tonight I came across some OLD photos from the 90's when the director was searching out a camp that would help her son and many others affected by epilepsy. Today we are a camp that has a different theme every year and hosts about 20 kids with a one on one counselor and some times two counselors to a kid. To this day the original director has been running the camp for 13 years. Camp would not be the same with out her and I can't wait to see what camp holds for the future, but let me leave you with a photo from camp. This is the family that has changed my world and taught me where to find acceptance and family.

Alternatives

     I know over the years I wanted to get all the fidgets and sensory stuff to help me cope with over-stimulation because I have aspergers. I was always encouraged to fit in with my peers and not let the little stuff get to me. People would worry that those extra little things would set me apart from my peers, but I have some ideas for those that don't want to go the therapeutic, and expensive brand name sensory stuff.

Weighted Blanket
     Okay yes, this one is from a therapeutic company or can come from a therapeutic company. Having a weighted blanket for falling asleep at night has helped me tremendously. It may be a bit pricy, but on the positive side, its not something that people other than your family really know about. Its not an obvious object like a weighted vest that clearly sets you apart. You use it at home and thats it.

Trampoline
     I have used the trampoline to deter me from many tantrums. It may not stop a tantrum, but it may hold it off or lessen the severity of this. Its not necessary to by some big expensive one from some outrageous company like Fun and Function, but go for the alternative cheap options. I really think any home should have a trampoline. Once again, its not something that people outside the home will think about, but you can't use it outside. Just get those personal ones. When you jump, it gives joint compression to your legs which release chemicals int he brain that relax you, just like the blanket.

Shoes
     Shoes have been a huge problem for me. I hate how they squish your feet. They rub up agains my feet and I can't move my little toes. Back when Crocs were around, i got a pair because they were cool. Low and behold, they became my favorite pair of shoes. No matter how dorky I look, I wear crocs and in the winter some cute boots thats look like Ugg knock offs from Macy's. Maybe not a cheap option, but something that is an easy accommodation.

Pajama's
     It took me forever to convince my family I needed one piece pajama's with feet. It is now the best decision I have ever made and has helped me sleep too. I used to have problems with sleeping and my sleeves coming up. Now I feel whole as one encased in this cute little suit. The only problem is I can only by them around Christmas time. Everyone used to tell me I would be too hot in them, my feet would get tangled, the butt would rip, but no I love them. Now I don't know what I would do without them.

     I really wanted to share these with you because some of them  are really simple and not very visible. You may also have a child that can't communicate how they feel and these may be some options to try and even maybe do the opposite, like always use sneakers. Everyone is different which is important to remember. Accommodations can be fun if you let them be too!!!

What's your superpower?

     Do you remember being a kid or even a teenager participating in large group activities? Often times you would have those ice breaker games and sometimes you would have to answer some silly questions. They were just questions to get to know you and it was fun. One question I distinctly remember having asked/answered on a number of occasions was, if you had a super power, what would it be? I would abruptly interrupt or if it was my turn just tell them that I already had a really cool superpower instead of actually answering the question. My superpower was double vision. True fact.
       Double vision was a pretty cool superpower to have. When I was in fourth grade I had eye surgery to correct a muscular problem. One of the side affects or risks of the surgery was double vision. The doctor never told us that a side affect was permanent double vision though. He only said it was temporary. It was one of those wait two weeks, then four weeks, then six weeks, then its just not going to go away deals. We would bring the concern up to my doctor, not because it interfered with daily life, but it had the chance to and it was just not right. Many teachers and professionals as well as my parents were amazed that it didn't give me more of a problem. It really wasn't much of a big deal to me and it was fun to use it to my advantage in ice breakers. The other day though, I got some not so great news from those who gave me superpowers.
     I went to the eye doctor on wednesday. They took me in a room and did some visual field testing which checks to see if you have peripheral vision. Then they tested me for glaucoma and who knows what else. I was sent into an exam room to wait on the doctor. Before you meet with the doctor, you meet with a technician instead of a nurse. This person checks your vision briefly to give you an estimate of your vision with your current prescription. Mine was 20/60 in my right eye and 20/70 in my left eye. 20/20 is normal. This means that what most people an see at 60 or 70 feet I can only see at 20 feet. These measurements fall in the low vision category. It wasn't that big of a deal because I thought I was getting new glasses.
     Did you see I put THOUGH i was getting new glasses? The doctor checked my eyes out and there was no prescription change. Now that doesn't necessarily mean good news. There were no prescription changes, but my eyes changed from 20/30 and 20/50 with best corrected lenses to 20/60 and 20/70 within a year just because of my retina's. The doctor compared my retina's to a low resolution DPI printer from like 20 years ago.
     That was pretty awful news. After she was done checking me she showed me some pretty cool devices that would help me see better. one thing was called a monocular. It was basically binoculars but with one lens. I peeked my right eye through the lens of that thing and I thought I was in heaven for a second. It felt so good to see like normal people see. It was so vividly clear. It was as heavenly as taking a bite of your favorite food without any guilt. I don't know; i don't have words to describe how I felt, but I was happy. They can't make those a prescription though. If only I could glue binoculars to my eyes.
     After we were done looking at low technology devices we went to look at some CCTV type devices. I'm hopefully getting a device that will help me read books better. It comes at a heft price though.
     I think the moral of this story is that I went to the eye doctor to get knew glasses and came out with some really low self-esteem. I thought better glasses would help. My vision is normal to me. Its not like one day I wake up and I'm blind. You get used to it, but knowing that something can be so much more and looking through binoculars just makes you feel awful about your current state. I'm not going to let this ruin my life goals or anything, but it does make them harder. It will especially make them harder as I get older and my vision gets worse. My eyes are stabilizing but my retina's aren't cooperating. I thought I was finally over the medical drama in my life with the seizures and all, but now this. I just want to be happy.