The R-Word

Everyday, I hear people ignorantly use the r-word or the word retarded. I truly believe and hope that when people use this hurtful word, that they are doing purely out of ignorance. They don’t see or understand the impact and true meaning behind the word they throw around as just any other adjective. People use this word in situations where adjectives like stupid, dumb, silly, slow, weird, messed up, and many others would be more appropriate to use. Not many people realize the great impact that this has on people with disabilities and their families. The r-word doesn’t promote a world and society in which people with disabilities are valued and accepted. Rather, this word creates a society in which those with disabilities are viewed as less and as though there is something wrong with them. The r-word defines people as nothing more than their disabilities and differences that make them so unique. Some people feel that there is an appropriate context to use this word in, but I completely disagree. This situation some might be referring to would be in medical scenarios such as a diagnosis of “mental retardation.” However this is incorrect, many do not know this but educating them can make a difference. In 2010 Obama signed Bill S. 2781 that removed the term “mental retardation” or “mentally retarded person” and replaced them with the terms “intellectual disability” and “a person with an intellectual disability.” This simple rewording helped to create a more inclusive and accepting environment by eliminating the hurtful r-word and replacing it with people first language. People first language is important because it identifies people as who they are first, and their disability second. It makes sure that people are not simply defined by their disability.  

To me, the r-word is more than just a hurtful word to some people that many people use. Using this word directly hurts me. It hurts me to hear people use this word and be so ignorant and derogatory towards people like my sister. When people use this word I hope that people don’t realize the true pain that it causes me and families like mine, I hope that they aren’t doing it on purpose. Hearing people use this word everyday validates the issues I deal with and worry about. I know that people aren’t always accepting towards people with disabilities and that sucks. When people ignorantly use this hurtful word, it shows that our world, while it is changing for the better, it isn’t changing enough. People like my sister still are not valued for who they truly are, they are seen as less because of their disability. I wish people could see people for who they are first, I wish that people didn’t see the disability before they saw the person. Due to all the negativity that comes along with this word, I do my best to try and educate people as to why they shouldn’t use this word. Of course, I can’t change everyone’s view on those with disabilities but I can definitely try. When someone around me uses the r-word I politely ask them to use a different word and explain to them that it is incredibly hurtful to people with disabilities and their families. Some people don’t care and continue to use the word, but that is their loss. By continuing to use the word they are hurting people and missing out on amazing friendships and relationships that could be built with people who have disabilities. But, the reason I continue to remind people is that sometimes it gets through to them. Most of the people around me don’t use the word anymore as they have been educated on the hurtfulness behind the word. By becoming educated about not using the r-word, we can make a difference. We can do this by starting with something as simple as pledging on r-word.org to not use the r-word. From there, just reminding people not to use the r-word and reminding them of its hurtfulness, even encouraging them to pledge can make a huge difference. Together, a world can be created where the hurt this word causes is understood and therefore not used. A world where special needs are embraced, valued, and accepted. This is a world that we need for people like my sister. This is a world I hope we can one day achieve. To get there, we need to start with ourselves, and that is something everyone can do.

Dear Fellow Siblings of someone with special needs...

Dear fellow siblings of someone who has special needs,

I myself am also a sibling of special needs. My younger sister, Megin, is nonverbal and has multiple disabilities but not a diagnosis. I love my sister more than anything in the world but that doesn’t mean that it is always easy to be her sister. I don’t know what it is like to be your siblings sibling just like others don’t know what it is like to be my sister's sister. But as siblings of someone with special needs we can all relate to each other more than other people can.

Our lives aren’t easy and it is perfectly normal and okay to feel like our life is hard and at times wish it was easier. Sometimes I wish that my sister didn’t have special needs and that she could play with me, do chores like me, and talk, but that doesn’t mean I love her any less. It isn’t easy when our siblings throw fits even when they are eleven years old. And it certainly isn’t easy when our siblings are in the hospital, I am lucky my sister doesn’t spend a lot of time in the hospital, but I have spent Christmas at the hospital before and she has spent many birthdays in the hospital.

It is okay to feel jealous of other people's lives because they have typical siblings. I know I have felt that way before. And it isn’t because I don’t like my sister or wish she wasn’t my sister, but that it can be hard to be her sister. People look at her weird and make fun of her and that hurts me as her sister as I am sure it hurts other siblings when it happens to their siblings. She uses a talker because she can’t speak and people make fun of that too. She doesn’t always understand when people look at her weird but I do, and I do my best to not let people hurt her but I can’t be by her side all the time. And sometimes it seems like my name might as well be Megin’s sister. I am Megin’s sister and you are your siblings sibling but that is not all we are and that can be hard for us as siblings I know. Yes, we are a big part of our siblings life and we love them very much but that is not all we are. We are members of teams, musical instrument players, volunteers, friends, pet owners, and many other things.

It can be hard to be us sometimes, but we are also extremely lucky. We get to have experiences that kids with typical siblings don’t get. I have an extremely close bond with my sister,  she trusts me and I am like her personal translator. I can know exactly what she needs when other people can’t. I’ve gotten to see her through big milestones, like when she got her g-tube out. People with typical siblings probably won’t see their siblings through milestones like that. As siblings we get to see all the milestones our siblings reach even if they are simple. We are our siblings biggest protectors. We also are accepting, and kind. My sister has shaped me and my life in so many ways and many that I don’t even know yet. Without her I may have never been able to know how to make the great connections and friendships I have with some of my friends with disabilities. I may have never decided that I want to become a special ed teacher because I would have never had interactions with them and seen what amazing differences they can make in people like my sister's life.

Overall, all of us siblings know it isn’t easy, and that’s just is the way it is. However, I feel extremely lucky that I get to be my sister’s sister because she is amazing and the best sister I could ever have. She has taught me so many things and impacted my life in amazing ways. Other people may not always be able to relate to what I am going through, but that is okay. My sister is awesome and as siblings we all know that our siblings rock no matter what. It is okay to feel the way we feel, the not great feelings, and the amazing feelings.

From,

A special needs sibling just like you

Overall my posts, I have really talked most about all the good things that come along with having a sibling with special needs. But in reality, having a special sib as I do, isn't all rainbows, sprinkles, and happy stuff, there is a lot of not so great things. One of them is how sort of unfair our lives are. My new friend from this year who also has a sister with special needs and I recently had a conversation about this. We were talking about how our peers have typical siblings and we don't. My friends and their siblings can go play volleyball outside together and play for a long time. With Megin and I, we can't. She doesn't get the concept of hitting the ball with your arms back and forth. And we can't play for a long time because she'll get tired or I will get frustrated with her. Megin and I can play some things together, but it is much much different from the way that typical siblings play. If I have won the uno game many times and she hasn't, then I will let her win, that isn't really something that typical siblings do. When my friend and I were talking, we also talked about how we just can't do what typical siblings do because we aren't typical siblings. It was a snowday when we had this conversation and we talked about how we couldn't go outside and a snowball fight with our siblings like our friends were doing. That isn't really fair. It is also hard because neither of our siblings talk, Megin walks but my friends sister doesn't. Those two things make life and being siblings a lot harder. We also talked about how we get jealous of other people. Its annoying when people talk about how they get to go to Jump Street or the movies just them and their sibling, that will probably never be the case for us. Once again, it just isn't very fair. Being a Special Sib is also hard because you are so much different from your peers. Before I met one of my best friends, none of my friends knew what it was like to be me. They had no idea what it was like to listen to your sister scream all night because she didn't want to eat her food or get ready for bed. Being a Special Sib sort of segregates you because no one understands what you deal with, or the severity of what they think are small problems. In the end, I feel that people who are special Sibz don't have it as easy as people may think. But my sibling is still the best thing that has ever happened to me, and in this last year, I've also learned that having someone who gets it is also an amazing thing!

I love my sister more than anything in the whole world. But, she also can bug me. I know I shouldn't but I get mad at her for things she can't control but I still sometimes do. It is not her fault that when I try and play volleyball with her we can't because she doesn't get the concept of hitting it with her arms. When we try and play "soccer" its not her fault that we can't kick the ball back and forth because she doesn't have those skills. I shouldn't be frustrated when we can't be like typical siblings because we are anything but typical. Even though I know that it, doesn't change anything. We play together a lot, its not like any other siblings when we do though. Our friends can play Legos, baseball, football, and do all those things with their siblings but, we can't. It makes me jealous that we can't do those things. Sometimes all I want is a typical sibling that I can do typical stuff with, like play sports.  Megin and I can't talk about everything or things like that. She can't give me ideas for what to write about for my homework or what to draw. She can't really help me with problems that I have like other siblings do. Most siblings have relationships where they tell each other everything but that isn't how our relationship is. Instead, we play Frozen Uno 24/7 and listen to Frozen music. We go to therapies, I laugh at her jokes, she laughs at mine, I always do her magic tricks and she always get my card right (most of the time it is not really my card 😉), and I almost always know what she means and what she wants. Most of the time I do all of the dishes and stuff by myself because she throws a fit when you ask her to help. That isn't fair and not like most siblings. But everything that I get mad at, I shouldn't because I know she can't help it and its not fair for me to be mad at her for something she can't control. I love my Megin special needs or not, she is still the best little sister I could ever have.

Being Different

As a sibling of someone with special needs, I have often felt like no one gets it and at sometimes, I have even felt pretty alone. The kids in my class up until this year never knew what it was like to have a Special needs sibling, so they didn't understand what I was going through. I always felt sort of different in the way that I didn't have anyone to relate to on a daily basis. Because I felt that way, it made the social and friend part of school a lot harder. One boy who has been in my class ever since kindergarten happens to have autism. I was (and still am) his best friend. We ate lunch together, we hung out at recess, and worked on projects together. I was definetly one of his only typical friends, most other people made fun of him for who he is but around me, he knew that he could be himself and not feel like I was going to make fun or take advantage of him. When ever someone would try to make him feel bad or make fun of him, he knew that I would stick up for him and make sure that he wasn't getting bullied. Ever since I was in kindergarten, I have just always been able to connect to people with special needs in a way that makes them feel good. But, because I was really good friends with the kids who had special needs, that also segragated me from all the other kids because they didn't know how to include kids like my sister, and sometimes the kids would even make fun of/bully me because of who I hung out with. Up until I was in fourth grade, we had a challenge program at my elementary school. Often times, instead of going out to recess I would go and help out in the challeng classroom. When I was I third grade, I ordered my lunch seperate because I would eat an hour earlier. I would eat with all of the kids who were in the challenge program and then I would go and play at recess with them. For me that was just easier than going with my class and getting bullied and some of my friends in that program would always be so excited when I would come and eat with them. Now at my new school this year, we are very segragated based upon what "team" we are on. I am on purple team which is probably the most segragated team. There are also a red, blue, and silver team. The silver team is the SSN team. Often times kids make fun of all the kids on silver team and treat them very cruely. I feel like this hurts us Special Sibz more than anyone else because we know that most likely kids are making fun of kids like our brothers and sisters. In middle school, it is hard to stick up for people but I still do it and I see some of my friends sticking up for people too. This year, one of my new friends sister has a disability also and she gets what it is like to experience all the good and bad things that come along with being a special sib. But overall, I feel as though being a sibling of someone with special needs can at times make you feel very alone and different from all of your peers. I think the reason that your peers make you feel so alone is because they don't know how to include kids like our siblings, they don't know how to talk to you about your sibling or what it is like to be you. In my opinion all it takes sometimes is being blessed by knowing, interacting or being a family member to a person like my sister to get how to act and what to say.

If I had a brochure

Being a special sib, there are embarrassing moments, angering moments, and moments when you just wish everyone would get it.When we are at the store, and Megin occasionally starts to throw a fit, it is definitely embarrassing because then everyone looks at us with dirty looks. They just don't get it. When Megin throws a tantrum at home, typically near bedtime, it is frustrating because then the whole night and often doesn't end well. I talked a lot about that in The not so easy part of being a special sib. And then, most often I just wish that people get what it's like to be a Special Sib. Some of the people that my parents hang out with don't always understand how they should act around her or how they should treat her. I wish that I had a brochure that told people about my sisters disability or her different skills and abilities, how to act around her, how to talk to her (she is not stupid!), and how to include her the best. Often times, someone will talk to her like she is an infant. SHE'S NOT STUPID! She just has a different size of skill bubbles, hers is smaller then other people's but that doesn't make her stupid. Sometimes people also give her weird looks or talk about her when she is within earshot. That is really annoying, just because she's non-verbal doesn't mean that she can't understand you and doesn't have feelings. She doesn't always understand when someone is being mean which means that people could easily take advantage of her which isn't fair. By having a little brochure that tells you how to treat her and act around her it would make everything easier and then maybe people wouldn't feel awkward or unsure how to act. Bottom line is that you should treat Megin and other kids with special needs the same as you would every other kid. Don't make them feel stupid or less than other people because kids with special needs are just different not less. And I think all Sibz would agree with me on that.

The not so great side of being a SpecialSib

I think it is inevitable that being a sibling of someone with special needs that, at some point you will experience your sibling getting mad and throwing a fit. Some siblings will experience this more often than others which just depends on your sibling and their disability. In my family I feel like I experience this more often than not. My sister will have good days or sometimes even weeks, but she always ends that honeymoon period with an even larger tantrum or something like that. Often times when my sister gets mad it is because she doesn't want to eat what is for dinner, or she doesn't want to get ready for bed, or someone else got mad and that rubs off on her and makes her angry also. Once she is just a tiny bit angry, it typically turns into an all night event of screaming and fighting. Not exactly the greatest way to end a day. In fact, just last night we had one of these nights. We had just gotten home from talker speech, it was our first full week back at school, and she was just tired. For some reason or another, she got mad and started to throw a fit. When she throws a fit, it is not fun to listen to, and seems to put the whole house in a bad mood. Having her throw a tantrum isn't my idea of a way to enjoy an evening with your family. I also really hate having to experience her fits and everything like that, but it is just a part of my life and part of being a sibling of someone with special needs. And, I think that most Specialsibz would also agree with me. Often times, when Megin starts throwing a fit, I decide to finish whatever I am doing, most often dishes and then go into my bedroom and try to focus on something else so I don't have to listen to her screaming and throwing things. Most of the time that doesn't work because there is too much banging or screaming. After awhile of her screaming, it gets annoying and makes me irritated. But she also only throws fits when we are just with us. We went to the mountains with my dads family and the whole time, she never threw a fit. But, as soon as we got back to our house, she of course threw a fit. We also have an adopted college student named Mackenzie who has become a part of our family, but she also has never seen Megin in her angry state.  I don't know why she doesn't throw fits in front of Mackenzie, but she just doesn't. Also sometimes my friends who have typical siblings don't get my struggles which can be annoying and irritating because they just don't get it.  Overall, there are good parts to being a Specialsibz like being able to have a pure relationship and learning acceptance and things like that. And then there are the times when it is hard to be a SpecialSib with the fights and things like that. But no matter what, I couldn't be happier with how Megin has impacted my life.

Megin is the one on the left. Mackenzie in the middle, and me on the right. :)