Tag Archives: Special Needs Kids

Why Jodi Picoult Deserves Praise From The Special Needs Community.

9 Feb

One of my favorite authors is Jodi Picoult. I’ve read all of her novels, and I saw her speak in March of 2010 regarding the release of House Rules (and it was by far one of the best nights of my life so far). However, I love Jodi Picoult for more reasons than she’s a great author (I quote her books more than any other author), every one of her books has taught me something, and the fact that she addresses touchy subjects. I also love her because she responds to emails from her fans. She’s said in numerous interviews that she’s the one responding, rather than one of her assistants.

In Jodi’s 2009 novel, Handle With Care, the main character, Willow O’Keefe, has OI, or osteogenesis imperfecta (a genetic disorder characterized by brittle bones that break easily). Even though Jodi discussed a disability that is very different from Cerebral Palsy, I still felt like I was able to relate to much of what Jodi discussed in Handle With Care about what it means to be different and what it’s like to feel so much physical pain on a daily basis. It was a special moment when I realized that my all-time favorite author was writing about certain feelings that I have experienced on a daily basis: the desire to find a place I belong in a society that’s not fully accepting to those who are “different.”

In March of 2009, I wrote the following email to Jodi:

Dear Jodi,

I just recently read the synopsis of your new book, Handle With Care,
and I am very excited to begin it! However, as I was reading your
conversation about Handle with Care that is featured our your website,
something caught my eye. Even though I don’t have OI, I have another
disability, Cerebral Palsy, which has affected my life since I was
young. Personally, I just want to let you know how deeply you touch my
heart with each of your books. You do a wonderful job of portraying
how it truly is for those of us who are different. I can sympathize with the kids you
interviewed that have OI. Even though it may be extremely
rough for them, they are just like any normal kid, and nothing warms
their heart more than when they are actually treated like one.
I am extremely thankful if you actually took the time to read this.
You and your books have made a significant impact on my life. I hope
to one day meet you and let you know face to face how much you have
truly helped me.
Thanks again,
-Amelia

This was her response:

Amelia, kids like you are MY heroes.  I hope you like the book and hope it rings true!
Jodi Picoult

So far, Jodi has discussed disabilities such as OI and Asperger’s (House Rules), and I applaud her for interviewing kids who are faced with the disabilities she has covered because those of us who have lived through the experiences our disability presents are the only people who know what it’s really like. Therefore, Jodi Picoult deserves a crazy about of praise and support from the special needs community for giving a voice to the issues that may have not had much prior awareness or increasing the level of awareness to a more diverse population. Though I still silently hope that one day Jodi will write a novel that has a character with Cerebral Palsy in it, I already have gained so much from the fact that she has written about many of the emotions I feel on a daily basis in regards to my disability.

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Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

A conversation with my younger self.

21 Oct

Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self, the little girl with the nervous smile who has yet to go through 3 intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain that she would experience in her future. I wonder…

I’m sitting on a bench in a small park that I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask. She looks up at me with the hugest grin on her face.

“Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said.

“Wait, how did you know my name?”

“Because I’m you. I’m you at 20 years old. We are the same person.”

The younger Amelia looks at me quizzically for a second, and then asks, “Does this mean that we can be friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something that I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends that will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” the younger me asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend that you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self as she looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something that anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially on the days when the pain gets really bad, but I promise you’ll get through it.”

The younger me then looks down at the braces that are on her feet and touches the plastic ever so lightly with her fingertips.

“I’m scared,” she whispers softly.

“I know,” I say. “It’s okay to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

The younger me looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see the younger me roll her eyes at me, I know that my words are impacting her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love for the little girl who has yet to know the intense pain that she will face. I have to look away from her before she realizes that I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” the younger me says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that the younger me doesn’t grasp the magnitude of this moment. If only she knew that I would save her from all of this pain if I were able to. However, deep down, I know that I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know that I need to remember to be her as well. I know that little girl is still within me, and she is showing me just as much love as I wanted to be sure and show her.

To Grace (Part 5): Gaining strength in little fears.

8 Oct

Here are the previous posts in this series. Take a look! To Grace. To Grace (Part 2): Walking Through The Fire. To Grace (Part 3): Accepting Love. To Grace (Part 4): Finding Your Voice.

Dear Grace,

Saying that I’ve been feeling scared recently is an understatement. Over the past month, my muscles have gotten tighter than usual, which is causing me to fall more. Even though I know the increase in muscle tightness is connected to the colder weather, it is still scary, and it often causes me to worry about years in the future where my walking could become limited due to tight muscles and severe back pain. I don’t know how much you worry about the future. Even though you are only 12, I know what you’ve been through so far in your life. I know your pain. Therefore, I wouldn’t be surprised if you did find yourself worrying about the years ahead. However, since I know how much I worry, I do hope that you don’t find yourself worrying as much as me. It’s not emotionally healthy. I think it causes me more anguish than happiness. Though it is something that I’m trying to work on, it’s not as easy thing to fix since I’ve had trouble with anxiety ever since I was a little girl.

You and I are incredibly similar in the hobbies we’ve had over the years. We both became involved in community theatre, and we also had years in which we both rode horses. Even though you were more involved in horseback riding than I was since you’ve participated in events and won blue ribbons, I know that it’s an activity that we both benefited from. Participating in “hippotherapy” was an alternative to constantly having physical therapy in same room with the same therapist week after week. Before I participated in “hippotherapy,” I thought that horse therapy was primarily used with autistic kids. I didn’t know that they could be used with kids who had physical disabilities as well. According to the American Hippotherapy Association, “Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.”

In terms of the hippotherapy that I participated in, I focused primarily on balance, trunk strength and control, and building overall postural strength and endurance. The specific exercise that I remember really well was called “around the world,” in which I’d start by sitting normally on the horse and then swinging my legs over the horse multiple times until I’d done a complete 360 while sitting on the horse. Now that I think about it, even though this activity sounds fun to me now, I was incredibly scared when I actually had to do it. The thought of falling was terrifying to me, and without the encouragement of my horseback riding teacher, Miss Mary, I know that I wouldn’t have been able to complete my exercises. Despite the fear of falling, it was an understandable worry since I did end up falling off multiple times. Even though I know those falls and having Miss Mary tell me I needed to get up and go get my horse was hard at the time, I know that it all made me a much stronger person. Miss Mary was a very important figure in my life because she was one of the first people (not counting my parents and my physical therapists) who helped me develop a tougher skin. Therefore, despite being afraid of falling and afraid that my horse would start to canter with the other horses (which was much faster than I ever wanted to go), I know that it made me stronger.

I know that your hippotherapy experience was probably much different from mine. However, I don’t doubt that you gained some of the same strength that I did when you worried about falling but then knew that your teacher wouldn’t let you fall. Either way, those little fears: the fear of falling, the fear of the horse going faster than you want him to, the fear of what lies ahead in our future in terms of our abilities, they are what make us who we are, Grace. We wouldn’t be who we are if we hadn’t learned in the beginning to let those fears propel us forward instead of hold us down. I don’t know how much that applies to you these days, but I have a feeling that you work hard too. We have to. It’s the only way through the situation we’ve been faced with. Without the strength that I’ve gained from the little fears in my life, I wouldn’t be where I am today. I wouldn’t be a junior in college who’s lived away from home since she was 16 and spends her days blogging and writing her daily story. I wouldn’t be able to talk so openly about what I have experienced.

I know how easy it is to let the fears bring you down, Grace. I’ve been there. I know how hard it is to push through and tell yourself that being more independent will be just what you need. But it’s the only choice we have. Keep on keeping on, and remember that I love you.

Amelia

The similarities between music and writing.

4 Oct

Last night, my friend Olive and I went to see a band called First Aid Kit perform at the Orange Peel, a popular, but small live music venue in downtown Asheville. First Aid Kit is “a Swedish folk duo composed of sisters Johanna and Klara Söderberg, whose close vocal harmonies and woodsy, folk-influenced songwriting take influence from the likes of Fleet Foxes and Joanna Newsom.”

I first recognized the connection between music and writing when First Aid Kit played their song, “Emmylou.” Take a look at the chorus of the song:

I’ll be your Emmylou and I’ll be your June
If you’ll be my Gram and my Johnny too
No, I’m not asking much of you
Just sing little darling, sing with me

Even though this song specifically refers to singing, I feel like it can apply to writing as well. The great thing about singing (and writing) is that even though it can be a one-person job, the pure joy in it is found when it’s shared with others. Yes, the majority of the time when I write, I write for me. I used to sing as well, and when I did so, it was mainly due to the fact that it made me happy. However, how lonely would writing be (and singing for that matter) if we weren’t able to touch people with our words and music? In my opinion, it wouldn’t be nearly as rewarding. Yes, it is an incredible feeling when I’m able to write out a specific memory and know that simply writing it out has brought me a sense of comfort that wasn’t there before. However, I don’t think I would be able to push through my writing ruts and my bad writing days if it weren’t for the people who were supporting me and encouraging me to keep on writing. I feel like it’s very similar in terms of singing. After all, when you go to concerts, you always hear the musicians constantly thanking their listeners for their love and support. I have no doubt that in their minds, they wouldn’t have been able to push through the hard days of songwriting without the support and love from their fans.

Though there were so many years that I wrote simply for me and me alone, that focus has definitely shifted over the last year. Even though I still do write for myself due to the fact that it’s incredibly therapeutic, I also write in order to impact others with my words. I write to share my story. However, I share my story because I want it to help others: others with CP, others who want a window into what CP is like (like the parents and friends of kids with CP), others who don’t know much about CP but have a desire to learn. Without the presence of those “others” wanting and needing me to keep sharing my story, writing about my life would be so much harder. Therefore, it is because of the support and encouragement from all of you that I am able to sit down at my computer every day and share my story, though some days it seems to come together very slowly. Thankfully, there’s no time frame for my writing. The only required constant is writing something, anything every day.

Social rejection through the eyes of a CP adult.

3 Oct

I walked into my Community Psychology class this morning to see the following prompt written on the board:

Journal about a time when you experienced disapproval or rejection from peers. What happened? What kind of thoughts and feelings did you have?

When I was in middle school, I took a required Physical Education class every year. In my middle school PE classes, we played “slaughterball,” which was our definition of dodgeball. I think “slaughterball” is a more accurate description of the game though. Every week in PE, I was chosen last for slaughterball. Even though being chosen to play was better than not being chosen at all, being chosen last was one of the worst feelings I ever experienced during my middle school years. When someone who sprained their ankle the day before and was on crutches was chosen over me, it pretty much felt like getting punched in the stomach.

Even though I know that many middle schoolers go through the experience of being chosen last for a game or sport, it didn’t feel the same. Though I know that other kids who were chosen last may have experienced the same feelings of hurt, frustration, and not being good enough, I know that I was chosen last simply because I didn’t have the level of physical ability that my other classmates did. I can’t even count the number of times I came home from school crying because, once again, I had been chosen last. I think it was even harder for me due to the fact that I couldn’t change the fact that I had CP, while the person who had sprained their ankle would be healed and ready to run around with the other kids in a matter of weeks. There never was a 6-week period for me to “recover” from my Cerebral Palsy. At the same time, it’s not something that I suffer from. It is just something that I have. No amount of exercises or talk therapy can change the fact that I am a 20 year-old girl who has Cerebral Palsy.

I’m incredibly familiar with social rejection. I’m way more familiar with it than I want to be. From being chosen last in slaughterball to getting pelted last in slaughterball because the other kids knew that I couldn’t move fast enough to avoid the ball coming at me, I’ve felt it all. I know what it feels like to be stared at, not just by kids but by adults as well, due to the fact that I walk funny. I know the feeling of sitting in my high school auditorium  watching a mini-play in which the main character had Cerebral Palsy…letting the tears come…and wanting so badly to just get up and walk out of the auditorium, but knowing that doing so would cause me to draw even more attention to myself. I know the feeling of having people avoid me due to the fact that I make them uncomfortable or they are just unsure how to act around me. I know what it feels like when someone is dying to ask me what is wrong with me but can’t seem to even say it because they are too afraid of bringing it up and hurting my feelings. Worst of all, I know what it feels like to have someone imitate the way I walk and then using the bullshit excuse of “I’ve been told to observe people for a class.” No, I’m not kidding. That happened.

You could say I have felt more than my share of social rejection. Sadly, the majority of the social rejection that I have felt stems from the simple fact that I have a visible physical disability, so I naturally become an easy target for teasing and social rejection. However, don’t think that I am saying that all the other kids who have experienced social rejection but don’t have CP are any less important. That’s not what I’m saying at all. However, I think it’s important to understand that due to my CP, I became an easier target for teasing and social rejection, so in my eyes, it hurt worse simply because I was being teased about something that I couldn’t change. Despite the fact that I have gotten stronger due to experiencing so much teasing and social rejection, it wasn’t easy. It still isn’t. Even now, if I get funny looks due to the way I walk, it hurts. It makes me want to cry or scream. It takes me right back to how I felt in middle school when I was chosen last for slaughterball because of the simple reason of having a physical disability. Being triggered to those moments of rejection in my childhood only takes a moment. I’ve always known that. However, the prompt in this morning’s Community Psych class made me remember just how easy it is for me to feel exactly how I did in middle school. It only takes a moment, a trigger, or even the two simple words of “social rejection”….until I’m back in the gym of my small town private school getting pelted with a red rubber ball because I wasn’t able to move quickly enough.

Being taught to fall.

19 Sep

In my early years of physical therapy, before all of my intense surgeries, I was taught how to fall. Though that may seem strange, it makes perfect sense when you realize that I was a kid who had a physical disability, which included having issues with balance on a daily basis. Because my physical therapist and my parents knew that I would be falling a lot, I had to learn how to fall so that I wouldn’t break or sprain my wrists every time my face met the concrete. I was taught to splay my hands out relatively wide when I felt like I was about to fall. However, the number one rule was to make sure my hands were out in front of me and that my palms were flat so that I wouldn’t injure any of my fingers. It seems like a relatively easy concept (one that would seem like common sense to an able-bodied person). However, things got a bit more difficult when I first began walking with four-prong canes. Since by that time I already knew I had to catch myself if I fell, I began to understand that I’d have to let go of the handles on my canes really quickly if I was going to catch myself in time. It wasn’t necessarily easy (since the canes ended up getting in my way), but I still did it.

Throughout middle school, my friends often told me I fell in slow motion. However, after seeing me fall countless times, my mom has told me that this isn’t the case. Although, it did cause me to wonder why my friends even thought to think that I was falling in slow motion if I clearly wasn’t. One of my first explanations is maybe since I “learned” to fall, my falls looked more controlled and slower, as opposed to just tripping randomly and landing flat on my face. Who knows though. As well as being told that I fall in slow motion, many of my falls go unnoticed. I remember one specific time when I was at the mall with my mom. My mom and I were shopping, and I don’t know if I was walking too fast or something, but either way, one minute I was walking and the next I was on the ground. However, when I looked up, my mom was walking away from me. I had to call to her, and only once she turned around did she realize that I had fallen down. Though it may seem sad that my own mother didn’t realize that her daughter had fallen down, I should point out that my falls were never really a big deal. I never made them a big deal unless I actually did hurt myself. They became such a regular part of my life that I didn’t make a scene when they happened. I just got back up and kept going.

However, on a day like today, falling isn’t such an easy thing to brush off. I fell a total of eight times today, and I have reached a point where I don’t fall too much anymore. Therefore, eight falls in one day sucks either way you look at it. Though it sucked that I was falling so much, when I realized that today was the first day that it actually got cold, the falls made more sense. When the weather starts getting cooler, my leg muscles get tighter, and tighter leg muscles lead to more falling. Add stress on top of that from recent exams this week and you’ve got an even higher probability of falling more. Unfortunately, even though I did learn how to fall in my early days of physical therapy, the falls can’t be prevented, no matter how much I wish they could. That’s life though, I guess.