A-Z Disability Challenge | F : Treat Your Friends In The Way You’d Want To Be Treated

I know I’ve said this for almost every post, but for today it is really important. The topic I will be discussing is how you should treat your disabled friends. I wish this was common sense, but I guess for some people, they lack knowing how to act while hanging out with a person with any kind of disability in both private and publicly!

I am purely basing this off of my own experiences I had while I was in school, because this was the time that I saw anybody outside of my family really making the conscious decision to really hang out with me outside of having a sleep over and of course, seeing each other in classes. This was also the point in my life that I realized that I was truly different than my “friends” because whenever I was around them, I made myself forget that I was disabled. I wanted to be like them so badly that I never felt accepted to be myself, so I wanted to write this post for both sides.


I loved birthday parties! I enjoyed getting out of the house and spending time with my friends outside of school. Although, from the ages 7 to about 10, there wasn’t anything too major that we all did together. I never played spin the bottle or seven minutes in heaven like most preteens did. Now whenever I had birthday parties and sleepovers, I was in a more controlled environment and everybody was basically forced to do what I wanted to do. After my 7th birthday and having over 20+ kids, that included a bunch of rowdy boys, came over to our house, I never had boys over ever. So, I never really had the chance to play spin the bottle like I really wanted to!

I think my favorite parties were over at Haley and Zack’s houses. I’ve been friends with both of them for YEARS! I met Haley in kindergarten, she was my first true friend and Zack’s grandparents lived really close to mine, so we’d see each other almost every other weekend. Anyways, I loved going to their parties. Whenever I would go over to Haley’s, we would be indoors, but when I was attending Zack’s, we were mostly outdoors, sitting by the bonfire, or at least I was. Both made sure to include me as best as they could, but there were a lot of things that they were doing that I knew I couldn’t do, so I felt conflicted a lot of the times, but whenever I’d get in that little funk, I’d end up talking to their families. I love both of their mothers, and whenever I see them, we’ll talk and hug each other!

Once we all got into high school, it was almost like, everybody was too uncool to have sleepovers. I had the hardest time finding people that wanted or had the time to sleep over at my house. I rarely slept at anybody’s house other than my friend Haley and with my cousin Kristi. There was a reason for this though, after I had my back surgeries I grew a lot both in height and weight,  in a short period of time, and it wasn’t until probably 2008 that I began to feel okay with somebody touching my back again. I was still pretty fragile by the time I hit middle school to the end of junior year of high school. This is why I only hung out at two people’s houses, because only two adults were really comfortable and basically took up the challenge to lift me up stairs, beds, couches, etc.

It wasn’t until the end of high school, were things really started to change. There is nothing like a broken heart, especially when it’s caused by your friends. Boys will come and go, but I think I cried more about not being to hang out with my friends. It was never like I wasn’t allowed to go out because my parents said so, it was the fact that nobody would do it. It wasn’t until my 18th birthday that I actually had a friend of mine, take me out. One person.

So, imagine the disappointment when I was told that I was going to get picked up to go out to eat with some friends and I never got a call or a text that said “they were right outside.” In that moment, I truly hated the body I was born in, because I thought if I wasn’t like this, I could be driving my own car, picking them up, and we’d be happy as clowns. Instead, I sat in my room permanently attached to my mom’s shoulder as the minutes trickled by and I received no messages.

It wasn’t until my mom basically said this is not right and packed us up, she texted my cousin Kristi to see if she wanted to go putt-putting that afternoon. While we were at a stop light, I got a text message from the same person I was supposed to be waiting on, asking if I was there already because they’d seen my mom’s car–still didn’t get the message that they were going to pick me up like they said–so I quickly realized that the whole thing was a big joke and that I got excited for no absolutely fucking reason! I know it’s been over 8 years, but I still feel somewhat hurt about this! Friends should never make you feel like that, ever! I can never literally look forward to anything because of this one outing that never happened. It’s okay though, my mom, sister, Kristi and I had fun at miniature golf anyways!

I do worry about these younger generation of disabled kids and teens, because I know how I was and how I dealt with my pain of never feeling like you are enough for roughly anybody. It wasn’t healthy and I know that now. It wasn’t until 2012, two years after I graduated from high school, that I truly began to really love myself for who I was. I started treating myself better! Unfortunately, I’m still not good at keeping up with my friendships, and it’s probably stemmed from this past experiences and other stuff. That’s why it’s highly important to always remember to treat your friends, whether they are able or disabled, like you would want to be treated.

The End.

Do you have any advice for the younger generations on how to treat other people? Were you ever put in the same situations? How did you make it out? Let me know!

A-Z Disability Challenge | E : Events

This was originally supposed to go to a fellow blogger’s site that fall, but by the time I had the time to work on it, she was booked on her blog. So, when I came up with this series, I thought about putting this subject on my blog instead. I hope this post helps with creating or attending your next event.

We all make some type of events with our friends, coworkers, etc all the time. A lot of people love being the person that comes up with the ideas and puts it all together. I will give kudos to anyone that does that job, because I would have a headache going into it. Anyways If you are the one that plans for the entire thing, you usually have it all planned out in your notebook or tablet, just to keep everything organized, you might be missing some things that you wouldn’t necessarily think about needing to know right away.

If you invite somebody that has a disability, whether it’s physical or invisible, you need to cover all areas to fit that person’s needs. Now how do you do that? Well here are some of the basic things you need to remember to do.

  • You need to make sure the place where you will be having the event itself is handicapped accessible.

  • If you’ve invited somebody who is deaf, hire an interpreter.

  • Put things to at eye-level, so that everybody can reach for things easily.

  • Allow them to have their own food brought in, if they can’t have what you’re serving.

  • Brings plastic ware like forks, knifes, spoons, and even multiple straws.

  • Ask the person if they need help, especially if they didn’t bring somebody with them.

  • Make sure they are included in every aspect.

I was going to explain each one of the helpful hints in full, but I thought some were pretty self-explanatory. The first one needs to be discussed is making sure the area is accessible to everybody. For somebody with a disability, we always look out for certain things, like ramps, elevators, and a large bathroom. As a warning, from the moment we get out of our vehicles, we are like hawks, making sure everything is how it should be. You have to be as honest with them as you can as well. If you tell a person with a disability, that the building is accessible, you have to mean everything! If there are stairs, there has to be an elevator. If there is a curb, you have to say “there’s no ramp”. If the bathrooms are tiny as hell, you have to tell them!

Nowadays, lots of people have different food allergies. They might have an allergy to gluten, milk, peanuts, etc and since these are pretty common, a lot of people will respect their wishes and make sure to leave out these foods for that person. However, if you’re on a special diet, and this goes for vegan/vegetarians too, things can be a little bit more difficult for the planner. You want to serve food that everybody will enjoy, but when more than one person cannot have a certain dish, you can’t just change it for them. This is why I included allowing people to bring a small bento box of food that they know they can have to eat, but also I say this for those, who are only allowed to be feed through a tube as well!

To me, this last one just seems mandatory for anybody hosting or planning an event. You need to make sure that everybody in the room is getting attention. Whenever I’d go to events at school, I always felt like I wasn’t included on a lot of things my classmates were doing, and it made me feel really conflicted and sad, because you don’t want to pull somebody or a group of people away but you also don’t want to be lonely at the same time. One thing I do want to say is that, when you do have somebody with a disability at your event, don’t watch them like a hawk. We don’t want your full-on attention, we just want to be included with the rest of the group, so just treat us like in the way you would want to be treated.

Have you ever hosted and/or planned an event before? If you invited a person with a disability, did they explain to you what you needed to look out for to abide by their needs? If you’re disabled, please comment below with some of our helpful hints you think people should know when inviting disabled people to events. 

Goals For 2019!

Howdy!

On the 31st of December, I saw a tweet that was asking for the top 5+ goals you’d like to accomplish for the new year on my sister’s account. I don’t usually post things like that, because mainly I don’t usually have a clue of what I want to do, but this time I did and I just decided to list all five of my goals for 2019!

The next day, my mom was at work, so it was just my dad and I for the day and I actually let him on these goals, because I thought he’d get a kick out of what I put down for the first two; what I didn’t know was that the next day, the second goal is getting closer to happening. I was a bit shocked by the news, but more so on the fact that my dad asked me what number that goal landed on my list. I was kind of stunned that he had remembered them in the first place, because when I originally told them to him, he was half asleep on me. And then as I was busy telling the both of them, I realized I forgot to tell my mom at all! Oops!

Move Into Our New House ✔️

We’ve been in the process of dealing with our new house for longer than we had planned. Everything was supposed to be done before Thanksgiving, but we’ve passed two holidays and we’re still not in the house yet. We’ve had a lot of issues! I don’t particular want to talk about that on this post.

Update: On January 9th, we finally moved in! It took a few more days to the rest of the stuff into the new house, but we’re here. I’m hoping to do a longer post about designing the perfect bedroom soon.

Finally Getting My New Wheelchair

I think my parents got the ball rolling on the house and my wheelchair around the same time! September was a big month for us, that lead to more question marks than anything else. However, we recently got a letter that most of the things we were wanting to be added onto the new chair were approved, so that is a good sign! I am still fairly wary about the whole thing. I’ve been waiting for a new wheelchair for almost 7 years. I’d like to gain some of my freedom back, like being able to clean my room by myself and just spend a couple of hours outside with our cats, taking pictures than being stuck up in my room the whole day.

More Cuddles With My Nephew ✔️

This had been the only goal to have been fulfilled at the start of the year! My sister brought little man over on the 2nd, and my mom let him sit on my right leg. We haven’t been able to do that before. Even though, he is really active, he really calms down whenever he sits on my lap. On this occasion though, he did something that kind of made me want to cry, because I wasn’t expecting it. He gave me a hug. He grabbed ahold of my shirt and left hand and pulled us together and I couldn’t help but put my head on the top of his; we only stayed like that for a couple of seconds but he’ll never know how much that meant to me, especially since I love giving cuddles myself too!

All The New Music

This one kind of stumped my mom, but as a music blogger, you know you can kind of devout your time into talking about Christmas music, because once it becomes the middle of November, the amount of real music coming out the next month is fairly smaller than you’d like and unfortunately, January has a slow start to releasing new music. You definitely don’t hear anything brand new right away in the new year. You usually have to wait until the second week of February to fade before you hear anything worthwhile. That’s why I’ve had to go back through the last bit of 2018 for any albums I can review on here!

New Opportunities For My Blog & I

In 2018, I decided it was time to branch out a little, away from the blog, and even separate myself from Disability Horizons for a while. I had big ambitious to start writing pieces for other people, whether they were other bloggers or bigger sites for digital magazines. Technically I have a three part series that I was planning to give away to a site that I actually like, but more importantly because they don’t have a lot of disability themed articles. I just wanted to lend my voice to them. I’ve talked to several blogger friends, Lucy and Melissa were very helpful during this time but I kind of lost my nerve at the end of spring.

One thing that I was able to do was work with The History Of Royal Women. I was writing for them at the end of 2017, but most of my work came out at the start of the year until the beginning of summer. I had done two different themes: disabled royal princesses and lives of heiresses of the eras. I’d like to end out that last one, because I still have two more ladies to talk about, but I worry that it’s been too long of a gap and they won’t let me back on to write anymore.

I would love to have more opportunities to write for other people, plus also offer up to other people to write guest posts as long as they match the topics I normally discuss on here. If you want to contact me, click here.

I do have more personal goal. The reason why I want to keep this one under a lock and key, is because I don’t want to put any pressure on anyone to make it happen right away, nor do I want to feel bad for my expectations. So, for the time being, the sixth and final goal will remain hidden away.

What do you hope to accomplish in 2019? Can you name five or more in the comments?

A-Z Disability Challenge | B : Building Trust

Howdy!

I created this challenge to talk about disability topics and today’s post will discus about building trust with other people. So, this piece will contain some personal advice and experiences, but it’s more directed to the families of disabled kids and young adults.


Trust is a big thing.

You learn it from a very young age, I think you don’t necessarily realize it until you begin to look back and it does make sense, it all goes together. Here’s an example, whenever a toddler is about to do something he’s not suppose to, you tell him “no” and try to explain that he’ll get hurt. You can’t expect your child to leave it alone, that’s a rarity even in itself, so you’ll most likely see the kid do it anyways and start wailing because it got a bump on the head. First off, kids have to learn things on their own. You hope they’ll get the message and learn to trust you the next time you say something like that, but even you know better not to trust a young child either. So, it goes back and forth quite a bit…

As somebody with a disability, I rely on people to help me with things. I don’t like to, because I always feel like I can figure it out on my own, but there are things that I cannot do by myself so I need help with them. When you have to invite a third party, it can always be a hit or miss. I learned this while I was in school. Whenever my aides were out for a period of time, I had many, many substitutes that would have to be with me throughout the day. I would have to teach them what I needed for each class and what they could do to pass the time. They were kind of dragged from one place to another; not to mention to give your trust on a person you’ve just met once or only had a few times, circumstances would worry me sometimes because I didn’t know what this person would do.

Honestly, I tend to give people the benefit of a doubt. It’s one of the bad things about going with the flow. You don’t want to second guess people right away, so you go all in and give your trust away like it’s pieces of candy. However, I’ve learned over the years to listen to my body about certain things: your gut will tell you when something’s up and mine would flare up a lot while I was in school. I would break down in the middle of classes and feel completely awful, afterwards I would be switched out of that class and I’d calm down and be myself again. Unfortunately, I haven’t had this happen whenever I’m around people, just whenever I’m in a different place physically. I guess that’s better than anything though, right?

For families of disabled kids though, everything is heightened. They’re not there with their child. They have to hope that whoever’s watching over their kid is doing what that person would do for their own children. If something has happened that is a little weird, things can escalate really fast and as someone who has had been in this kind of situation, it feels horrible. You don’t want to get anyone in trouble, but if something is off about how you’re being treated whether it’s physically or emotionally, it is best to speak up about it. You don’t deserve to live in fear of what’s going to happen once the dominoes collapse. They have to give up a lot of their trust to the people their child is around on any given day, and that includes their friends, and that alone can cause a lot of anxiety, but you do continue to take chances because you do want your children to be treated like everybody else, if they don’t, how is your child suppose to live in the real world?

How are you with trusting others around you? And families, what kept you going when things weren’t ideal with your child’s aide or surroundings? Do you have any advice you could to other parents out there?

A-Z Disability Challenge | A : Arthrogryposis Multiplex Congenita

Howdy!

So, last week I basically announced to the world that I was starting my own challenge. I have created this challenge to talk about disability topics in alphabetical order. Some will have a personal touch, like today’s post will discus my condition: Arthrogryposis Multiplex Congenita. The others will be educational and/or opinion pieces. I wanted to give you a good mixture of different themes that everybody, whether you have a disability or not, would understand a little better.


Honestly, I just wanted to write this for people who are really curious about my condition, and who are maybe a little embarrassed or shy to ask me questions up front. This will hopefully help you understand a little more about what it is, what areas it affects, and some of the stuff I’ve had to learn to do, to adapt to my surroundings.

Arthrogryposis Multiplex Congenita is simply as a joint condition that can affect many areas of the body, but it is formed in the womb. Since my joints of my arms and legs are limited to movement, the muscles never really developed, thus why they are really skinny. My arms have always been bent at the elbow, I’ve had many therapy sessions to help lessen the tension in my arms. My elbows will never unlock and I’m okay with that. I’ve always had insecurities with the fact that my hands just lie there. I was never able to use my fingers, but there are a lot of people and young kids whose hands like mine and they can actually write and draw with them. I don’t know what actually possessed me to use my feet, but it was definitely a day to remember for my parents that’s for sure!

I am not able to walk like everybody else. I have two very different feet, and neither one are able to lay flat on the ground, so whenever I did experiment with walking, I usually walked on my tippy toes instead. I grew up rolling and eventually scooting around on my bottom. The only way I can explain for the rolling is because since I wasn’t able to move my arms on my own to get them out of the way, I think my family was afraid I’d get rug burn, so I just started rolling around. Thankfully, I was so small that I could fit through most doors and hallways. I can’t give you a definite age when I switched to scooting but it had been before I was four years old, because I was going to a special school and honestly I needed a better way to get around. I was pretty slow, but I didn’t care one bit. I use to chase my sister and cousins around my grandparent’s house all the time! Of course, for long distances, I was usually carried around but when I was four years of age, I got my first wheelchair and then the roles were reversed and everybody had to chase me!

As I continue to get older, I am in more and more pain. The majority of it is around my back, but the rest of it is in my hips and knees. I was very active as a child, but as an adult, I’m a pretty-stay-in-one-place for a long time. I can sit in the same position for close to three hours and power through the pain in the sides of my hips in order to get work done. Don’t worry, I was not in any pain while writing this post! I feel like I should be considered lucky with the pain in my knees, because I have family members with different types of arthritis, so I always know it could be worse. My nana goes old school and just rubs Vicks on the affected area, I’ve tried talking to my mom about going that route but I agree with her of the overwhelming smell, so I take painkillers to ease the pain away.

If you have any other questions, I will be doing a Q&A later on in the challenge, so just leave your questions below if you’re curious about anything.

The Book & Cookies Tag

Howdy!

One day I realized it had been a long time since I read some blog posts of some of my favorite people, and as I scrolled through the long list I found a really fun and interesting tag about books and cookies. Marie had published this on her blog last month and I thought her answers really great and I just thought it would be a great first post of 2019!

I had to write out all of the questions on my note pad so that I could basically memorize most of them and think of the answers while lying in bed watching a really awful Rockets game! We’re not going to go there! I hope everybody enjoys this and if you decide to do it too, please let me know because I’d love to know what kind of books you picked for each cookie!


Chocolate Chip – A Classic Book That You Love Or Really Enjoyed

Unfortunately, I haven’t read a lot of Classics, even when I was in school, we rarely read anything which now is a bit of a bummer because I feel like I missed out on a lot of interesting books and lectures, but my teacher wasn’t the type to read the kind of classics I’d like to read nowadays.

However, when I was a junior I took a Novels class and we read three classics. The one I loved the most was Mary Shelley’s Frankenstein. It was the first book we read and it’s been the one to last the longest in my mind. I could understand Victor for the fact that he was seeking attention from his father and the love of his life, by doing something that was seemingly impossible and criminal to do. In 2016, I got to learn the origins of how Mary came up with this beloved Gothic story, and I think all that did was make me fall in love with the story even harder!

Thin Mints – A Fandom That You Really Want To “Join” and/or A Hyped Up Book You Want To Read

I’ve noticed that every book I read, I’m usually one year or in some cases 10 years after its original release and you miss everything that the rest of the speedy readers of the fandom have been able to enjoy. A part of me isn’t as upset about it, but since I have found my love for the Harry Potter, Red Queen, and To All Of The Boys I’ve Loved Before books, I feel like I’ve been left out again but instead of it being the other person’s fault. This one is all me. I feel like I am apart of their fandoms, I just don’t voice it out loud very often.

Now for the hyped up book though. I’ve tried my hardest to get into Paula Hawkins’s The Girl On The Train novel and I just cannot get into it. However, if I were to decide to say “screw it” and watch the movie without picking it up again, I would probably enjoy the movie because I have been loving suspense-thriller type of films lately! It’s really hard to explain why these two sections have different results, I’ve never been able to solve the mystery.

Shortbread – An Author You Can’t Get Enough Of

This is really difficult to answer because I’ve only read a handful of books with sequels. I know that’s not exactly the question, but I guess my favorite author is Olivia Cunning.

If you want a book that is in the exotica genre but not as “degrading” as Fifty Shades, I would suggest you check out Olivia Cunning’s books. She writes about rockstars! The series that I love the most is the Sinners On Tour and I’ve always been torn between Trey and Jace being my favorite male characters. I have a soft spot for the both of them! Olivia has been working on another series/band, called Exudes End and I have read one of the novellas and I didn’t like it as much but I want to give it another try as we get to see what’s happened with Trey and his ménage à trois with Reagan and Ethan.

Somoas – An Emotional Rollercoaster

This was the easiest one of the bunch, because it’s tie between The Fault In Our Stars by John Green and Me Before You by JoJo Moyes.

I find it a little odd, although it definitely didn’t surprise me that these would be the ones I’d chose because I bawled my eyes out for the both of them. Since they discussed real disability issues, it would have an effect on me but I didn’t know how bad until I got to the stuff I have, myself, have thought about, like leaving a legacy and contemplating suicide. I wish I could say, I didn’t cry as hard while watching the films as I did reading those heartbreaking senses, but I did and I’m not ashamed to admit that it got me twice!

Oreos – A Book Whose Cover Was Better Than The Story Or Vice Versa The Story Was Better Than The Cover

Unfortunately, I am the type of person that does judge a book by its cover. However, I am still very picky with the stories no matter what the cover looks like, because I’ve seen some gorgeous front covers but the stories were not my cup of tea, like Melissa de la Cruz’s The Ring And The Crown. I thought was cover for both editions were absolutely beautiful but the actual story was a nightmare. I never finished reading it because it was such a let down for me.

The only cover that I feel like was perfect to the theme was Nikki Sixx’s photography book called This Is Gonna Hurt. The cover is very dark and mysterious; it was exactly what I wanted to see for this type of book. He tends to like a lot of different oddities, and thinks the ugliest of things are the most beautiful of all. He was trying to give you a different perspective of things and I loved it!

Peanut Butter Patties – A Book That Wasn’t What You Expected

I think we all have our expectations of what a certain is going to be like, sometimes we’re right with our assumptions and other times we’re not. I’m always in the middle of the pack when it comes to thinking about where a book is going to go, but I do try to keep an open mind as much as possible!

I had decided to read Thirteen Reasons Why by Jay Asher while the first season of the show was on Netflix. My sister had bought the book after she completed the series, which I thought was strange, so after she was through with it, I asked if I could have it next to see what all of the fuss was about and I had heard of what it dealt with and I was both curious and shocked by it. However, when I started reading it and learning about the significance of each character and what made Hannah Baker want to take her own life. I felt bad for both Hannah and Clay, he about broke my heart in half with his sweet personality, but I carried on because I wanted to know more, but once I was finished with the book I made the decision to not watch the series. The book was enough for me.

Snickerdoodles – A Book You May Never Stop Loving or Re-reading

Well, since I hardly ever re-read a book, I can’t answer the last bit, but I love a lot of books. I love my historical books–they’re my babies, but weirdly enough my beloved stories, would probably be counted as short stories or novellas? They are The Last Leaf by O Henry and The Yellow Wall-Paper by Charlotte Perkins Gilman. I read both of them while I was in high school. They both have really interesting plots and I’ve never been able to forget them and I’ve been out of school for close to 10 years!

So what did you think of this tag? Have you read any of books I’ve shared with you today? Hope you all enjoy your first day of the new year too!   

Did I Watch The Winter Paralympics?

moviws

Howdy!

First off, I wanted to ask how everyone is on this lovely morning? I hope you all are enjoying or have enjoyed your Monday, hopefully you had a good day overall. We are now in April, and spring is in the air, but just because our calendar says “spring” it doesn’t that the snow will suddenly go away! If you live in an area that has had these experiences in the month of April, you should know better!

I wanted to talk about something today, as you can tell from the banner above, we’re going to be discussing the Winter Paralympics, but before I answer the question, I wanted to ask if you got a chance to watch any of the sporting events? A family friend of mine had some issues finding a channel that was airing it on her television, so she ended up having to use Google Play to see it, but unfortunately they didn’t have closed captions so I don’t think she could really keep up with it as much. As far as I know, she was the only one close to me who showed some interest in it.

I don’t know who thought about scheduling the Paralympic games in March, but it was the worst idea ever! I knew that they were going to be airing the events back in December, but I also knew the Big East conference was going to start up too, and I also had to add in any of the professional basketball games that were on during those two weeks! As those coming weeks got closer, I realized I had to make a decision about whether or not to watch the Paralympics at all.

I didn’t think I would like it as much as the summer games. So I made a last minute decision and didn’t watch more than like ten minutes of both wheelchair curling and sled hockey. After watching all of the basketball games, I just wanted to have time in the afternoon to relax and if I wanted to watch anything, it could be one of my food shows or a Disney movie. Sometimes when I was actually sleeping good during the week, I was literally recording any of my games that came on at 10:30pm, because I couldn’t keep my eyes open any longer!

So did you get to watch the Winter Olympics and/or Paralympics? If you did, could you tell me what were some of your favorite highlights? If this was your first time ever watching the Paralympic games, were you ever surprised by a certain event or athlete? 

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