It has been three hundred and sixty five days since I came up with this idea. So, it is a special day for me in a way. Like I have said in previous posts, I had no idea that this blog would be such a hit with you all. It's been such a pleasure writing for each and every one of you. Let's go back to June.
When I arrived back in Glenview, it wasn't a good feeling. I chose to do some self reflecting and ask myself why. I came up with what I was labeled in Glenview versus Elmhurst is radically different. I am labeled much more frequently with the word disabled in Glenview than at Elmhurst. At home, I constantly need someone's help which is mentally draining. I can't direct the way I am taken care of, I can't say I want to take a shower at this time of the day, I can't go out of the house and necessarily be safe. At Elmhurst, I can schedule when and how my personal care is performed and go anywhere on campus and be safe. When that is taken away from you, you're going to FEEL disabled. There is a difference between BEING disabled and FEELING disabled. I am disabled 24 hours 7 days a week 365 days out of the year which is fine with me, it's my life and as I have expressed before, I love my life! However, feeling disabled is an entirely different thing. It happens when Katherine calls me on Skype and I am in bed unable to answer her call, it happens when I need to get out of my chair and I can't be doing what I want on the computer and anytime I am put into a position where I can't move or be productive which is rare at school. Now, I do lay down at school-just on my own terms. I will choose to have a meal in bed which gets me out of the sitting position or watch The Bachelor laying down. It's when I have to lay down and have it interrupt my life that I don't like it. So, at home I feel disabled more than at Elmhurst because I have control my life. But, I am happy to say there is a place where I can go that I am not labeled by my disability at all. That is Camp Courage!
I saw Katherine and that was it. We were attached at the hip. The counselors caught on mighty quick that we were a pair. I was so happy to see my girl! It was really exciting then I met up with Keith! Oh! That was just spectacular to have Katherine and Keith with me!
The first counselor I met was Kate. She understood my situation and Katherine's situation which is rare that one person can understand both of us and how we function together. You have to understand, once the parents leave, it's all on the counselors to take care of us. So, whoever meshed with me-well, really Katherine and I stays with us. I liked Kate for Katherine and I and she seemed to like us. Katherine and I were nervous about the first meal because due to a new issue where she hears EVERYTHING 100 times louder than we do. This is obviously extremely stressful on Katherine. We both knew that there was a good chance she wouldn't be eating in the dining hall. The moment of truth arrives. It's dinnertime and I ask Katherine to try eating in the dining hall. She tries and everything is going well, were giving each other looks like this is going to work. It lIt worked until they used the microphone. Kate, Katherine and I both know it is not going to happen-whatsoever. Now, we were anxious about being able to sit together. In the past if one of us has had to sit elsewhere, the counselors didn't really let us sit together. This year was completely different. They bent over backwards to let us sit together, depending on the weather we would wait in the cabin for our meals or eat on the lovely balcony. And, of course Keith would visit us at least once or even bring us our desserts. This turned out to be quite the lovely adaptation! Thanks, Katherine! There were several events that Katherine and I missed because of her hearing but I really didn't mind. I mean, if I wasn't with Katherine, it was not that fun. Half of the reason I go to camp is to see Katherine so being without her would feel so wrong!
I have to talk about Keith now. He and I both knew that the other counselors wouldn't necessarily understand our relationship. We Skype each other at least twice a week and talk about everything-not your typical camper counselor relationship. So, before I even got to camp, he explained to the counselors as best as he could how it would work. He knew I would want to swim with him and basically spend every minute I could with him. We really felt comfortable with each other. See, Keith skypes with me and through that I think he learned some of my cues such as, "breathe" and "relax" especially when I started to gag. We did get those weird looks like why are you guys so close? But that's par for the course!
There are also two other people that I simply must mention which are Caycee and Danielle. Caycee is a counselor at Camp Courage and she really is such a cool young woman. She also has Cerebral Palsy and does not let her disability get in the way of anything. I don't think she realizes she has a disability half of the time. I love the girl to death!
The other young woman is Danielle. Oh my God. The girl is exactly like me. We think exactly the same! I started talking to her and it was like talking to my twin. She wouldn't take a magic pill to walk or talk and I feel the exact same way. All she needs to live is her service dog and her wheelchair. Wow! The girl simply blew me away.As you can probably tell, I had such a great time at Camp Courage! I always say half of my heart is in Minnesota and half of my heart is here. To emphasize this point, I made a video. It's from 2007-09! It's been such an unexpected surprise and it just keeps getting better. Please watch my video:
My Journey at Camp Courage!
When I got home from camp, it was definitely difficult because I missed all my friends so much and my life was boring back home. One of the things that helps with this AND the independence factor is Facebook. Facebook is a social networking website that allows friends all over the world to connect with each other. Personally, it puts me on an equal playing field because the conversations are through instant messaging or messaging (it's e-mail on Facebook). I know all adults think it's this dangerous and horrible thing, I'm here to tell you, it's really not. If you are cautious, it is an amazing tool for socializing. I mention Facebook in here because I know a lot of parents with special needs kids read this blog. It's a great tool because they can talk to their friends without help from anyone. It's funny because once I tell people I have a Facebook, you can tell the person who I am talking to now understands that I'm a lot like them. Is it the magic pill for social acceptance? No. However, it's a step that your kid can take to be seen as a "normal" peer. Just throwing the idea out.
Also, one of the things that kept me independent and for that matter, busy is working at Pathways therapy center. I worked with two boys who used the DynaVox and helped with the newsletter. I felt absolutely blessed to have a job in this economy and the people are simply extraordinary there. I can't thank you enough!
Before I end this blog, I have to mention something quite sad. My great uncle's mother passed away this July. I wanted to recognize her life in this post. I did make a tribute to her however, DO NOT feel like you have to watch it if you did not know Mrs. King. If you do wish to watch the tribute, please go to:
All I have to say is: Elmhurst College, I am back!
Lots of Love,