A-Z Disability Challenge | G : Long Term Goals

Howdy!

For today, this post will hopefully be lighthearted; the kind to make you smile with some of the things that I’ve been collecting as part of my long term goals to accomplish in the future. It’ll have the same format as the other post about my goals for 2019, but I’ll explain a little more about each one, so you will understand why they are important to me.

I like to think there’s a big difference between a bucket list and long term goals. In my Pinterest board for my bucket list things, are not very realistic. You’re wishing to do them rather than actively trying to seek them out. Now, I’ve seen a lot of people who make bucket lists and actually cross off certain ones, but not everybody is that lucky. I’ve never thought about having or even listing out my own personal long term goals like this before, but since I wrote out my other top five goals for the year, I figured maybe I’d be lucky and actually push myself a little bit to actually make a dent in my list. I’m hopeful that’s all that matters to me!

When I created this list, I tried to list them in some kind of order, but we all should know that life doesn’t always follow this rule all the time, but at least it’s organized for me to explain each one for you below!

Write A Cookbook 

I’ve always wanted to write a cookbook, between being my dad’s guinea pig for years and the beloved recipes that my nana was taught by her parents, and then papaw’s family, I just feel like this is the next step! What I find interesting is that I have these big plans of writing it and including inventive gadgets that could help other disabled aspiring cooks and/or bakers, but I still have yet to actually do anything in the kitchen.

When I was with my nana, I could convince her to let me help her mix or pour the various things into the bowl, but I can’t even do that with my own parents! Recently, I went out into the kitchen to watch my mom make broccoli and cheese soup and she would not let me do anything. In her defense, she hadn’t made it in a long time so she was basically panicking making sure she had everything and it was all coming together. I was basically there to express my cooking knowledge with her, which that part was fun, but I yearn to actually do something. I’d love nothing more than to make my parents dinner one day, but these two goofballs won’t let me!

Go To The AMC Convention 

In 2012, I found out about the Arthrogryposis Multiplex Congenita Convention. This was also the same year, I found the whole mother-load of fellow AMCers and the fact that we even had an awareness day for us! I was extremely happy because I love to talk to people, especially family members of kids that have various types of disabilities. Parents and guardians are always looking for others that may have experienced similar situations, and I enjoy being a voice to the younger generations to gain some independence and be who they want to be. This was one of the main reasons why I created my blog in the first place!

It wasn’t until 2017, when the AMC group basically announced to everyone where they were going to host the next convention – because they go to a different state every year, so it keeps things interesting for everybody that attends. Well, I usually like to look on their Facebook page on the last day to see where they will be going to, and for 2018 they were going to Louisville, KY. I was happy! I showed it to my mom, who basically told me “if you can talk your dad into it, then maybe.” Now this came out at the end of July, my sister announced to us in October that she was pregnant and that she was possibly due at the beginning of July… So, my nephew was the reason why we basically dropped that idea from ever happening.

I would love to go to the convention one day, which is why I have included it onto this post. I would love to meet other people to see how they’ve managed to do things. I also think it would be a good thing for my family too, because I’m always hoping that they’ll want to help other families, especially my sister, she’s very helpful and I think she’d enjoy meeting the siblings and basically talk to them about her experiences of being the younger sister of someone with such a physical disability. I just think it would be a great experience for all of us!

Speak On A Panel At AbilitiesExpo

A couple of years ago, I heard about the AbilitiesExpo. I know there is one in Chicago and the other is in Los Angeles. I saw a vlog on YouTube of an attendee that jacked a tripod onto the foot pedals of his wheelchair so he didn’t need somebody else holding his camera for him. I was stunned at this, and I immediately showed it to my dad, we’ve been tempted to do something similar to mine. Anyways, I think the expo is very cool! It is usually for three days, and includes small sections of different companies for fashion, wheelchairs, biotechs, etc.

I have had the same recurring dream of speaking on a panel with other wheelchair users, it usually included Tiphany Adams, Jordan Bone, and myself. These ladies are very special to me as they’re always talking about their experiences of becoming a wheelchair user, and what keeps them going and thriving! I think being able to speak to a large crowd with several other fellow disabled ladies would be interesting! We could discuss real topics like sex and relationships, and give people another outlook to women with disabilities. I don’t know if AbilitiesExpo has ever done anything like this, but I thought it would a cool idea to do in the future!

Visit England

I think everyone knows about this one. I actually didn’t have it in the original line-up, I had a totally different goal but I realized that it kind of went with the first one, so I switched it out.

I’ve talked about how much I love England, and yes, most of it goes with the royals, but I have become kind of obsessed with the overall history of the country. I love the cities, London being my favorite! Bath and York are two of my favorite cities that like to show off their impressive structures, from the cathedrals to a row of houses.  Recently, I’ve been loving various pictures of the countryside. The villages are beautiful, they’re completely different compared to what I see here in the United States. Buildings and houses that were built in the 1600’s still being used to this day, the architecture is gorgeous! If you’d like to know all of the places I’d like to visit one day, click here.

Have A Baby

For a long time, this was the only long term goal I ever had and as the years go by, it continues to go further down the list. I’ve talked about this in the past, so I’m going to attempt to keep this as short as possible.

Years ago. I did include the words “get married” before it, but I’ve sort of lost my interest in wanting to do that. Even though I have my parents and sister’s marriages to look at for inspiration, marriage as a whole in this day and age doesn’t appeal to me. People make vows and sign a certificate but will cheat on their spouses anyways. I don’t want to say because of my disability, I’d always be faithful, because I am not invincible to anything, especially my own temptations.  However, being attached to someone that could be the one to give a child frightens me, because they could always come up with a story that I could be a bad mom, adding to the stereotypical image of people with disabilities can’t bear and raise children.

I’ve always wanted to be a mom. My maternal instincts come out whenever I am around young children. I want to teach them how not to be afraid of someone like me. It is hard sometimes to be around my sister and nephew together, I still get fairly jealous that she has a son to call her own, but I also have to tell myself that I get the easy job as an aunt, but I’ve always wanted to do the things that she does on a daily basis. I have met with other disabled moms out there and they do ease the questions of whether or not, if it’s possible to have a child, but it’s getting to that point where I can fulfill that dream of mine that feels impossible. Hopefully one day it will happen.

Do you have any long term goals? What have you done to try accomplishing them?

Life Lately | Oh, Singing The February Blues!

Howdy!

Yup, it’s me! I’m back to blogging after what feels like forever! February wasn’t a bad month, but it still sucked. I wasn’t my normally peppy, productive self and even though I had a lot of different types of blog posts in my head and in my daily planner, it’s been hard to concentrate to do anything worthwhile.

It seems like for the most part, February was full of sickness. I have over 200+ friends on Facebook and I’m pretty sure, the majority had some sort of illness! I wasn’t sick with the flu, like most people, but I felt really out of it though. I just wanted to sleep, which concerned my parents because they know how I hate taking naps in any part of the day. A part of me thinks it has to do with my depression creeping back to me. I’ve been feeling negative with myself again. I’ve also noticed that I just want to start bawling in both happy and sad times. It’s been really frustrating to figure out which could be wrong with me, because I don’t know what could be different compared to how life was like in October!

When February arrived, I was a little down with myself because I hadn’t used that last week of January to work on the first two weeks of the new month, so I think that was part of the issue in the beginning, but once I started working on my disability challenge posts I was fine! It wasn’t until I started working on my Valentine’s Day stories that I really noticed something different with myself. In January, I wanted to write happy, love stories. I don’t know why I decided to write about breakups instead. I was really mad at myself for not doing better since I had been so excited to begin production on them.

I don’t like putting a lot of pressure on myself. I’m already doing two other series on my blog, plus one more exclusively on my blog’s Facebook profile for this year. I did not need to add a fourth idea this late–and yes, it is considered “late” because I’ve done enough planning! When I came up with these ideas, I gave myself enough time in between so I wouldn’t feel like everything was crushing me to the point where I’d give up on everything! I just decided stop what I was doing for February and wait to publish anything until March begins, so I would have a new month, a new start to get things finished, scheduled and ready for you all to read something different and fun!

For the past few weeks, I’ve been trying to do more self-care things, like reading and watching movies again. I’ve also joined a fun community of baby name euthastists like myself on Facebook, so I’ve been having fun collecting pairings, and adding onto my personal list and “baby names” Pinterest board too! Speaking of Pinterest boards, if you’d like to see what I’ve been watching on TV lately, you can check out my “seen in 2019” mini board now! I’ve been exploring the drama and time period films again, so if you are into historical, tear-jerker type of movies, you’d think you’ve hit the jackpot with my list!

How was your February? Have you or your family been going through the sickness too? Hope you’re all feeling better!

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. 

A-Z Disability Challenge | D : Dear Disability Community

Howdy!

For today, I am basically writing a letter to the disability community. This post is going to a very strong, opinionated piece. I have been keeping a lot of these thoughts locked up for a long time and I think it’s time to unleash them on here. So you’ve been warned!

I feel like the disability and feminist communities are fairly similar with the way people within it can be quick to judge you if you don’t agree with a certain subject. Everybody thinks we all should have the same feelings about the main topic that both groups discuss, like equality and you role as a human being. I’ve been thinking about the role and where I stand on the various topics that both groups fight for on a daily basis, but I’m mainly targeting disabled people.


I think I’m an army of one. I’ve always thought that, because I was kind of taught that over the years. The only back-up I have is my family and maybe some close family friends, but hardly any of them share the same feelings as me, especially about disability in general, because they’re not in my shoes, or maybe in this case we’ll say “wheels?” It’s not their fault by any means, and I’ve kind of learned to live with it. I’ve become more of a silent advocate for the community. I don’t join a lot of the discussions of bigger topics, like politics. When I was in high school, we were taught how to register to vote and if you already 18, you were allowed to go ahead and do it in class. When I was asked to do it, I said no. There was a lot of backlash for it, one person even told me that I wasn’t allowed to complain if a person you’re rooting for doesn’t win because I didn’t vote. Fast forward to 2016, after seeing the chaos, I don’t think my vote would have mattered because Trump had bewitched the public into letting him into the White House anyways.

The second reason why was because I was afraid of basically breaking rank in my household. My parents are strong Republicans and being somebody, who supports the opposite committee or person, is literally the worse thing you could possibly do. So, I try my best to stay far away from politics at home and even online within my own community. Despite the fact that the majority of the disabled people out there, hate our President as much as I do, there are some very extreme people who will do anything to “stand up” for their rights.

At the start of 2017 I think, I saw a video of a news channel filming people with various disabilities, some of them removing themselves out of their wheelchairs, lying on the ground, and being carried away by security and police officers to jail. I’ve never been in a position to feel like that was my only option, but I was conflicted at the thought of seeing how far people in different circumstances doing anything and everything to plead to people, even making a spectacle of themselves. However, whenever a bill that contains something about disabled people, I am concerned but all I feel like I can do physically is pray.

The next topic I’d like to discuss is about the death of Stephan Hawking. There was a cartoon drawing of Stephan ascending to Heaven, free of his wheelchair, computer, and tubes, and he’s shown walking up the golden stairs to the sky. I thought it was a beautiful drawing, but a lot of wheelchair users were really angry about it. Immediately, there were arguments being made about being in a wheelchair is a form of being “free” and that the drawing just added to the myth that once we die, we’re free of all of our flaws: disabilities included.

Again, this was another thing that I chose to stay out of, because I did not agree with the disabled community on two things. Throughout my childhood, I was told by various family members that when we die, our bodies will be transformed if you will. As I got older, I began to believe this more and have always looked forward to that possibility. And the other was, I don’t believe my wheelchair gives me my freedom. Am I mobile? Yes, but I am not free to move around for a long distance by myself. I feel like I have the most freedom when I’m on the floor. Why? Because there’s more space to spread things out, I don’t need everything right beside me at all times. There are issues with reaching for things that are higher than me, but I always find my way around it.

I know I’m going to be attacked in some form by the words I’ve said in this post, but I still stand by what I believe and that is, we’re not all supposed to have the same feelings and nobody is going to make me convert to their way of thinking, trust me, people have tried their hardest to do this for years! I’ve heard many different sides of these two subjects online, mostly on Twitter and so far, nobody’s said anything to divert me in another direction, the only thing I’ve learned to do is hold my tongue and I’m perfectly fine with doing that for the rest of my life.

How do you stay out of the drama with your family, friends and/or online? Are there topics you do not discuss at all?

A-Z Disability Challenge | C : Be Truthful To Your Children

Howdy!

This post is very close to my heart. Since my sister found out she was pregnant with my nephew, I wondered how we were going to explain to him about my disability. It’s kind of easier to explain to children in the grocery store about how came to be like this. Our go-to is “god made me like this” or “I was born like this” but I have a feeling Nolan isn’t going to let those explanations slide. I think it is important to talk about disabled people with young children.

I’ve never been able to hold him like everybody else because of my arms, so imagine the expression on his face when I started basically wagging them in front of his face when he was about three months old! He was mesmerized that these large hook-like arms that were just swinging back and forth. He’s been practically in love with them ever since. He has expressed his interest in my feet recently, one day he was on the couch and I started waving at him with my feet and he just starting waving with his foot! He’s starting to realize how different I am compared to his mom and dad. We have a special connection.

Children are both very curious and honest creatures. They haven’t been in this world long enough to see the bad unless they’ve been taught it since they were in the womb! They like to figure things out for themselves, and only ask their parents or grandparents when they’re a bit lost for words. I’ve seen a lot of kids in various ages, stare but also try to shield their faces so you don’t notice them. They usually wait to ask questions until I’m fully out of view, but I’ve realized if I tell them “hi” or I wave at them, they’ll just put you on the spot right there and you just have to go with your gut and hope their families will fill in the gaps the best they can after you leave. Here’s my advice to parents who would rather dodge this discussion because you think it might be too difficult for them to understand; if you’re comfortable then explaining the differences between a girl and a boy’s anatomy and/or race, then saying something how a person could be in braces from head to toe, standing in crutches, or rolling around in a wheelchair will be a piece of cake.

How do you explain to children about disability? Where do you stand on educating people on how to talk about some of the more common disabilities, like spina bifida, blindness, deafness, or even cerebral palsy to children at home or even at school?

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?