Make A Difference (through music) Monday

Hi Everyone!

Just a heads up, this will probably be my last post before heading to Camp Care Thursday-Sunday then immediately off to a beach vacation for a week with my family.  I’m trying to “unplug” for this time, as I always do during camp, but you never know what I might get inspired to share with you all during a week on the beach.

I wanted to share a little something about Camp Care before I go though.  I thought, what better way than through music since music becomes a huge inspirational diving board for our morning and evening meetings.  This will be my 6th Camp Care session now, and these two songs have kind of become a perfect definition of what Camp Care is for me and for every one of the therapist staff, volunteers, kids and their families. (Note: get your tissues for the Matthew West song…)

Tenth Avenue North-Love Is Here

Matthew West-The Last Ones

For my readers that don’t know much about Camp Care, please check it out here. It is an amazing, completely free, therapy and recreation camp for children with special needs. Any of my SN parents readers or peers, if you are in the area anywhere driving distance to Connecticut (and even if you’re not) it’s worth checking out for you or your child.  Therapy focuses on both manual therapy techniques and functional therapy. I might have been a few years late on the bandwagon, but it has truly made the biggest difference in my life in terms of other therapies.  At least, that’s how I feel now that I’m an adult and have tried various things for myself. (Second note: you do not have to be of any specific religious affiliation to take part in camp or its activities.)

I know so many of you reading this have been such a huge source of support for me over the years through all my different trials and triumphs and I thank you immensely for that.  Many of you have supported my fundraising efforts in the annual Columbia Classic which benefits Camp Care.  This is so important since the camp, and its therapeutic riding program, are entirely run on donations. Thank you.

Even though I choose to participate in Camp Care as a volunteer first and foremost, when the time comes to participate as a camper, I thank God that I have so many of you praying for me and hoping for me. It makes all the difference in the world for me and my spiritual, emotional, and physical successes during Camp Care. Thank you.

All I ask is that you continue to keep all of us involved in camp in your thoughts and prayers over the coming days. All my love.

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Summer fun! and the Camp Care Countdown

Yesterday, I read a post by Dana of the Uncommon Sense blog–a wonderful blog about life with her adorable daughter Maya! She talked about having SBAD, or Seasonal Blog Abandonment Disorder, and how she’d been letting her blogging slip by in exchange for ice cream and park trips and all-around fun. I got a kick out of this concept and it is so true!! Summer showcases so many more fun activities than sitting on your couch (ahem, like I am right now) blogging.

For the most part, I feel like I’ve suffered from this a bit as well between weekend getaways, trips to the beach, and just being plain old busy, but right now I feel like writing. About what?

My first swimming lesson went great last week! I was nervous the night before, but when the time came I promised myself I’d try everything at least once and see where it took me. By the end of the half hour a swam all way to the deep end with just two noodles under me for support! Needless to say, I will be having another lesson this week.

We are officially 11 days away from Summer Camp Care 2011 and I couldn’t be more excited! Not only will this summer’s camp be acting as a sort of reunion between myself and some QU friends that I, regrettably, don’t get to see very often, but I also feel more “ready” for this year’s camp.  As I said in this post, you can never be truly ready for the amazingness that camp bestows upon you, but you can try.

First off, I’ll be staying up in the town when Camp Care is located this year, which is going to make things all the more wonderful! Camp is only about 45 minutes from my house and I had been going one because it was easier to shower, etc in my own house but that also meant either leaving early from fun night events with the kids like the BBQ and talent show, or getting home at 11pm only to leave the house by 6:30 the next morning. No good. Staying will allow me to have extra bonding and fun time (and extra sleeping time!!)

I’m also looking forward to taking on the dual role of Camp Care camper and volunteer. At past camps, I have had moments of questioning my place–if I really belong as a camper or a volunteer, what I could even do to help the kids, what I could even do to help myself?  Though I’ve had many times of questioning myself over the past few months, I feel much more sure of my abilities to be available for our amazing kids physically and emotionally. I also feel much more sure of my own goals and things in order to make the most of my experience as a camper.

It’s going to be a great 4 days!! Followed immediately by a week of beach vacation before the semester starts up…but let’s not talk about that yet!!! 🙂

CP Awareness Day

Hello again! Two posts in two days, who am I?! I couldn’t not write something today since it is Cerebral Palsy Awareness Day…

First, if you’re interested in reading some other awesome blogs about amazing children and adults with CP, please check out The Roll Call created by Sarah a few months ago.

Second, I wasn’t really sure what to write for today. I didn’t want to bore everyone with statistics because we can all look those up on our own. At the same time, I didn’t really have a specific “CP story” I felt compelled to share today in particular. So, this is what I came up with…

Cerebral Palsy, for me, has never meant much. Not to say it hasn’t affected me, clearly it has, but the term itself has never meant much. CP is what doctors call an “umbrella term”; it can be classified in different ways based on how it affects a person, but the term itself doesn’t really mean anything. At least not in the traditional way that most diagnoses do.  I’ve come to realize this more and more over the past few months.

I have no stories, no real words of wisdom tonight…but I will say that Cerebral Palsy for me has become defined by the things I do in spite of it and, in some ways, thanks to it. I have chosen to create my own definition to the best of my ability every morning when I wake up. Not the other way around.

Change the Conversation. Please, I’m Begging You…

Okay, so I have to be honest with you all. I first became aware of the Spread the Word to End the Word campaign (to remove the word “retard(ed)” from people’s everyday vocabulary) only one year ago when a friend of mine brought the campaign to our university.

While I wasn’t aware of the movement, I’ve always been a proponent of its message. I have always HATED the word, and HATED how casually it’s used. But, honestly, this hatred wasn’t because I have a disability; it was because I am a human being. And I believe any human being can, or should, understand why this word can be so damaging to so many people.

In fact, it wasn’t until today, reading Ellen’s post that I was hit–hard–by the reality this effects every single one of us. Physically disabled, intellectually disabled; the word is discriminating in itself, but the hurt caused by the use of this word does not discriminate. Basically, Ellen set up an alert on Twitter for anyone that used or tagged the word “retarded” in their posts. She then replied to each of them explaining how their use of the word could be hurtful and damaging to so many. Please take a minute to view her post. It will amaze you ( or at least I think it will) how many people just don’t get it and how many people are not afraid to make it clear that they don’t care. There were some poeple who, Ellen reported, thought and apologized, but it’s still shocking.

One user in particular really was my reality check. They replied back to Ellen’s message saying something about a “photo wrecker”. Ellen did not know what this meant, so she looked it up on Urban Dictionary. For the record, this was the first I’d heard of the term as well.

According to the site, a “photo wrecker” refers to: “a retarded or disabled person”.  The example they used was:

Question: “Who’s the photo wrecker you’re posing with?” Answer: “Oh, that’s Stephen Hawking.”

Absolutely disgusting. That was the point where I lost it today. I sat at my computer and sobbed. Realizing, for the first time, it effects all of us. I cried until I had nothing left, until I realized I could do something about it.

So here I am tonight. Asking each of you, from the bottom of my heart, to do what you can to Change the Conversation. Thank you.

Racing Ramblings…

There’s “Music Monday”, there’s “Make a Difference Monday”…all of these usually lead to some pretty great posts with new songs and new causes, but today all I have is a Monday post. It’s been a while–my apologies! School took over for the month, and I can’t say I’ve had anything life altering to post for you all. Which, I suppose, could be a good thing.

I’m really excited for the upcoming months. March boasts my 5th Elton John concert with my dad, Spring Break (not going anywhere, but can’t wait for the mental vacation) and of course the 4th Annual Pedal for a Purpose!

Add in there that I might be participating in my first race of the season on the 19th, and I’m one happy girl. I stress the might because it all depends on weather/road conditions/my body. Either way though, it’s coming! I sat down on Saturday and picked out a race a month (tentatively) from March-October. Right now, everything is local with the exception of the LIVESTRONG Challenge Philly in August. This race has been on my radar since 2008, and I think this might be the year. I’m not sure that a race a month will physically and logistically work out, but I’m going to try my hardest.

I miss everything about having a solid workout regimen since moving back home after college, and having the races in the back of my mind will hopefully give me some added motivation.  Speaking of motivation, it was lacking for about a week, but it’s back again. I think I had been going so strong since right before Christmas with the working out and everything that I just needed a break before I hit serious burn out.

Having taken a week off or so has left me with a question…and I thought I’d pose it to all of my readers, not just those with special needs or parents, but anyone. After taking about 6 days off from stretching an hour a day, I am extremely tight (particularly hamstrings) and kind of feel like I am starting back at the beginning. I know that I will get everythiing back now that I’ve started again, but it just seemed fast.

So I guess my question is: is that normal, when you take a week off, to feel like you’ve lost ground that quickly? Do any of my reader’s know if CP makes the tightness happen quicker(or something)? Or is this something that everyone who works out, stretches, etc. goes through and I just don’t know because I’ve spent most of my life NOT doing those things? 🙂

Thanks for checking in, Happy Monday!

Big Picture

I’ve always prided myself on being a “look at the big picture” kind of girl. For the most part. I mean, except for the whole, “I want to accomplish this and I want to accomplish it RIGHT NOW” attitude I sometimes find myself having. But who doesn’t experience that feeling sometime of another in their life?

I had a Crossroads appointment Monday, that I happened to squeeze into at the last minute. I’ve been so happy with how things are going, and still am. I wake up every morning–no joke–and thank God for bringing me to this place and to these therapists; because for the first time in, honestly ever, it feels right. It’s difficult for me to explain to anyone who hasn’t experienced it, why Crossroads is so amazing and why it has worked for me when so many people didn’t think it would and so many other therapies really haven’t. But the more I go for appointments, the more I realize I don’t need to explain anything, because I know it, and I feel it. 

Like I said in a few post back, I was struggling recently with feeling like I’m not doing enough for myself outside of PT and one my own. I talked, at length, about it with my PT Anthony yesterday and his answer was one that I didn’t expect. So I thought I’d share his insights here, for any interested readers.

I basically said that I didn’t feel like I was doing anything because I may work on standing for 3 minutes a day, or stretching and that’s it. And, while I know those things are all helpful, they don’t feel like enough because I’m so used to the mindset of “okay, do these 5 exercises and cross them off your list everyday”. Anthony laughed, and we had a long conversation about how your body isn’t made to work that way. We don’t do things in isolated movements. We don’t lift a box by simply curling our biceps. We are dynamic movers. We use our movement systems and our postural systems together. They feed off of each other. So, why would we want to intentionally seperate something that doesn’t work seperately? Good point.

The second question I asked was sort of more specific to me, but can also be useful to anyone reading–disability or not. More about the brain and thinking through a task and why, sometimes,  you seem to get caught up on some part of the task. Anthony told me when I’m working on something to focus on what I’m trying to accomplish only, not every step, because our bodies do all of that extra thinking at a level below our consciousness so that we don’t have to; and when we try to over think or work against that, it becomes harder. Makes complete sense.

Yet, it’s not something we ever think about because we’re all taught that working out the “right way”, again disability or not, means to do a certain number of this or that so many times a week. But in reality, it’s all about the big picture. Because how often when you’re functioning on a daily basis are you really going to stop and say, “Okay, now I have to shift my weight to my right foot”? Never. Or hardly ever. So, why start that habit when practicing to do something?

I think, in a way, (for my parent readers out there especially!) kids have it right. For many children with and without special needs, anything they do is trial and error. And it’s also done without higher order thinking. Okay, mainly because they haven’t developed that yet, but still! There are some things worth overanalyzing, but I’m starting to learn that the movement of your or your child’s body isn’t one of them. You can aid it in ways that might be easier or more efficient, but really it’s taking the time to work through itself, even if it’s a slow pace.

It’s all becoming much more clear why everyone’s body is made to go through the developmental sequence. There’s a reason we roll, crawl, sit, etc. in the order we do. Forgive me if I don’t know the correct order, still haven’t gotten through the whole sequence at 22. 🙂 It’s also becoming more clear that, if I want the end of that sequence: walking, the stages I’ve “missed out” on are what I should be working on.

Like I said, now it’s all making sense as to why this might take years to accomplish. Just some food for thought.

Hope [noun, verb]

1. The feeling that what is wanted can be had or that events will turn out for the best.

2. To look forward to with desire and reasonable confidence.

The two definitions of hope, courtesy of Dictionary.com. I wanted to start out my Winter Camp Care post with these definitions just to show how broad hope can be, how there are so many ways one can have hope, and how there are so many reasons to have hope. Almost any situation, event, or object can fit into one of these two definitions. We all have different hopes. For ourselves, for our loved ones, for the world, the list could go on and on.

As I mentioned in my MM post (I hope you enjoyed those songs!), hope was the camp theme this session. Our shirts were printed with Faith. Hope. Love. on the back; hope a little more bold and upfront than the other two. We all knew this was going to be an amazing session, but we always think that.

Our morning inspiration started off with one of the therapists reading the Rich Mullins essay, 23rd at 32. It’s a moving story about fear, faith, hope, and the balance between the three. Check it out at the link above. I was playing both sides this Camp; patient in the AM, volunteer in the afternoon, but my session wasn’t until midmorning on Saturday. It ended up being nice enough outside that we took some of the kids (in coats and hats and gloves, don’t worry moms!) to play wonderball, and soccer, and whatever else they wanted. Some kids could run around on their own, some had to be pushed, and some had to be carried. Either way, everyone was having a good time! And we definitely have some future soccer stars at Camp! 🙂 

I played photographer for a bit outside and will post some of those pictures when I get them. Capturing these moments through the lens is always as exhilarating as it is to experience them first hand.

When I went in for my Bootcamp session, which started out with another mini Crossfit workout, I was less than thrilled. I’ve been feeling “stuck” and like I don’t do enough for myself outside of PT sessions. This tends to be a recurring thought every 6 months or so.  With that feeling, I wasn’t really expecting the bootcamp session to go that well. Plus, I’m still getting used to this whole “crutches only” lifestyle I’m trying to live. It’s hard to explain, but there a safety in the walker, knowing that if you let go to lift something over year head, it’s behind you if you lose your balance. With crutches, if you lift an arm over your head, you’re also lifting half of your stability. Without going into major details, it was much harder for me this time, because it was much more active.  Which also gets my brain playing the “this shouldn’t be so hard” game. I don’t recommend it. Not that fun of a game! The second hour stretching felt amazing, though! If someone could come over and decompress my spine for that long everyday I’d be a very happy girl!

My absolute favorite part of Winter Camp is the Christmas Show. It’s a performing arts showcase, but on by the Skating Club of Hartford. They sing, dance, and dress up (no skates!) to perform different Christmas Carols and love-themed songs to represent the Christmas season. The kids love seeing Santa, Rudolph, and Gingerbread men dance around for them, and I love watching the joy on their faces. In the middle of the show,I wish I could tell you what song it was, I broke down crying. I’m not ever sure what sparked it, but something got to me. 

The theme was hope. And with these children, these families, these volunteers, and these therapists–this is the place I feel most hopeful. I sat there for a minute just taking in my emotions and having one of my ever-popular silent conversations with God; wondering where this came from and what I was supposed to do about it.  I made up my mind that whatever He wanted to do about it would be done tomorrow, because all that was left of the day was indoor activities while the 3rd bootcamp session went on.

The third bootcamp session. The deeper I got into conversation, I knew He was willing me to be at the 3rd session. After the way the first session went, I didn’t know if this was such a good idea. But I’m learning it’s better not to question. 😉 Apprehensively, I drove back to Crossroads and asked my PT if the 3rd group was a specific group of kids, or if I could join again…and downstairs I went again. Since all of us in 3rd session had already been stretched in the morning, it was much more active. We worked on core strength, kneeling, crawling & patterning, and sitting. Yes, sitting. For all of us in the group, sitting on the floor unaided either cross legged or otherwise, can be really challenging and quite a workout. I hadn’t worked on sitting or really been able to, since Summer Camp. Or so I thought. It wasn’t easy, but I was able to do it for about 5-8 minutes. And everything else. All while this was happening, two moms were telling stories about their sons, both young adults ages 18 and 23, who had been told to have no hope. Doctors had written them off, therapies had been cut, nothing seemed to be going anywhere. Until they decided to take control, both by coming to Crossroads and Camp and by doing something for themselves and working toward something. The stopped using everyone else’s lack of hope for them as an excuse, and found their own.

As you can imagine, being in a room with 12 other people, all fighting as you have fought can really play with your heart. As one of these moms was speaking for her son Chris, who has very limited verbal ability, all I could do was stare into his eyes, and sit a little taller for a little longer, even though I was getting tired; to keep fighting as he does.This was my moment of awakening, my moment of finding my own hope. I don’t want to say I’d lost hope in the past few months, but it wasn’t easy to find. I was still using every excuse in the book to my advantage. I was still afraid to try. And I still had not found reason for me to hope for myself. That all changed this camp. I realized that it’s not magic fairy dust that gives me the ability to do very well in a PT session, but then not at home. It’s not environmental. And there’s no outside force to blame. Yes, therapies have been cut and doctors have expressed their lack of belief, but it’s been 2 years now. I can’t keep using that as my shield anymore.  It’s all on me. I’m the one putting in the effort or not putting in the effort. And I’m the one holding myself back or propelling myself forward.

There you go, more life lessons learned via Camp Care. Hope you enjoyed!

Assistive technology

Just a quick post tonight because I’m exhausted and need to rest up for my date with Harry, Ron, and Hermione (Harry Potter and the Deathly Hallows Part One for anyone who might be living under a rock…sorry, but it’s true!) in 12 hours! It’s actually really sad that this era is officially going to be coming to a close soon. 😦

Anyway, tonight we went on a field trip to the New England Assistive Technology (NEAT) Center for my Rehabilitation class. The center deals with all sorts of assistive technology; from car and home modifications, to wheelchairs/walkers/crutches, to high tech stuff like computer mouses (mice?) controlled by your feet and A LOT of apps on the i-pad and i-touch for speech, voice recognition, etc.

One of the technologies we got to talk a lot about and play with was the new Proloquo2go app for the i-pad. This is a augmentive communication app that can say a variety of things just by a person touching a picture or word. Sorry, that was an incredibly simplistic way of describing that, but hopefully you get it. I was SO SO SO excited to hear the women at the center talk about this app because it’s something that Ellen over at Love That Max, who I’ve blogged about as being one of my blogging idols, has talked about.  NOTE: the other idol being my cousin, friend, and all around amazing human, Jen at Marvelously Comical. Check her out too! You won’t be disappointed! If you read this, sorry, I had to! 🙂 )  Anyway, back to the app. I’ve seen videos of Ellen’s son Max using it to communicate a thought and get so excited over doing so! 🙂 It was a really cool moment, for lack of a better world, to tie tonight back to something from my blog family. You can check out a video of Max using his i-pad here and here! Pretty sure you’d be hard pressed to find someone not smiling after watching this!! 

It’s so amazing and inspiring to see all the new technologies that are coming out for kids and adults with special needs! They are all so useful in daily life, and also in encouraging development of new skills and abilities.

Expectations

Disclaimer: I just took my cough medicine with codeine, so we’re all pretty lucky if this post makes sense. Sorry in advance!

I’ve been thinking a lot today about the other “CP stories” I’ve heard from either people I’ve met in my life, or other bloggers that I’ve now developed connections with. The thought came after Greg over at The Casual Vegan (who you should definitely check out if you haven’t already in my previous posts) cross-posted the article I shared yesterday about the man who found joy and freedom from his CP via dance. Greg wrote that this man’s story was a lot like his own as far as doctor’s expectations and opinions about his abilities, as well as the ineffectiveness of much of his time spent in PT.

It’s so interesting/weird to me that so many of us out there, no matter the age, have all gone through the same old process of doctors, PTs, and, for some of us, surgeries. We have all gone and done our own things in life and have lived our lives the way we see fit, yet we’ve all been met with the same attitudes and expectations at one point or another by those doctors, PTs, etc. This is the hand we are dealt. We must live with it. Don’t expect to do this like your peers. You’re not going to be able to handle that. Whatever those things are for each of us, we’ve heard them.

I like to think that things are different now than they were when I was 5 or 6, or even before I was born. Yes, I’m sure they’re better, but they are nowhere near perfect. Children and adults with CP and other disabilities all over the country (don’t even get me started on world view, because it’s 100 times worse in MANY other countries) are still facing that invisible, yet powerful wall of can’ts and don’ts.

I guess it just makes me think…when will this gap start narrowing? When will so many of these health care professionals step up and start believing in their patients/clients/whatever you want to call them, the way they expect us to believe in ourselves? And why is it that we are always expected to lower our own expectations of ourselves to match their’s of us. I absolutely cannot imagine what my life would be like if I (and my parents) did that. I mean, come on; spinning, 5ks, and “normal” exercise in general have become my sanity. That certainly was not what was expected of this 3-month premature, 2lb 2oz baby!

Until they start to “get it”, I suppose we should just keep raising, and surpassing, our own expectations! After all, that’s much more fun than lowering ourselves to someone else’s!

A fighting chance

As you might be able to tell by some of my recent posts, I’ve been at a bit of a loss for topics I guess you could say.  I’ve been so busy with trying to get projects and papers done while also making sure I stay on top of my committment to exercise, etc. that I blogged about a few posts back.  I think that’s somewhat bogging down my brain and slowing down my creative juices.  Hopefully they’ll be back and fully functioning by next week, because I’ll have a lot to blog about by then! Well, I hope I will anyway. Monday starts off with a Crossroads appointment, Master’s grant interview, and maybe even a spin class?! Like I said, hopefully lots to blog about.

For today though, I have something really awesome to share!! I don’t know how many people out there are familiar with Kyle Maynard, but Kyle is Mixed Martial Arts Fighter and CrossFit Gym owner (we all know how much Molly loves CrossFit 🙂 ). Oh yeah, he’s also a congential quad amputee. Yep, no arms and legs. Yep, I said MMA Fighter. Intrigued? I was too. This guy is AMAZING! When I first heard about his story I was completely shocked at what he has done with his life and how he’s completely turned it into such an amazing gift to share with others.

 The reason I’m blogging about this today is because on Monday, November 8th at 7pm E.T. ESPN 2 will be airing an hour-long documentary called “A Fighting Chance”, chronicling Kyle’s quest to be the first amputee MMA fighter to compete against another able-bodied fighter. My DVR is already set. I’m sure it’s going to be awesome.

This is a video trailer for the documentary with a little glimpse into Kyle’s life.