Category: Disability

Turner Syndrome and Disability

Charli Dee4 Comments

So I’ve recently been denied a service for people with disabilities. This wouldn’t be the first time, but that doesn’t make this situation any less frustrating. I’ve mentioned on my blog before that I am a person with a disability. The problem is that my disability is very unclear. I have an invisible disability, and often others can’t understand what exactly is wrong with me. My physical and intellectual abilities seem to be very much intact. What could I possibly need with disability services, right? Sometimes I even question whether or not I am a person with a disability myself because of all the doubt around me. However, while people are deciding whether or not I am actually a person with a disability, my struggles are very much real, and I deal with them everyday. 

I’ve talked about the condition that I have on my blog many times. I have a genetic disorder called Turner syndrome, and it’s the reason for my struggles. Having Turner syndrome does not automatically make a person disabled, however, it can lead to disability. Tuner syndrome can lead to many complications. One of those complications is learning disability. Unfortunately, this fact is not very well known, because Turner syndrome is not well known. Also, girls with Turner syndrome can lead normal lives with proper treatment. However, every girl with Turner syndrome’s experience is different, and some do struggle more than others. 

Another issue is the type of disability that girls with Turner syndrome sometimes have. Turner syndrome can lead to nonverbal learning disability. This means they can have issues with visual-spatial skills. Unfortunately, nonverbal learning disability is still not recognized as an official disorder. 

All of these combined issues make it hard for me to get the services I need. People simply don’t understand my struggles, and don’t understand why I need help. What is really needed is more awareness on both Turner syndrome and nonverbal learning disability. What is also very needed is an understanding that every person’s experience is different. Not every person with a disability has a disability that is obvious. 

Advertisement

Disability Day of Mourning

Charli DeeLeave a comment

I just found out that today is Disability Day of Mourning. It is a day to remember people with disability who were killed by their caregivers. Unfortunately, children don’t get to choose the parents they are born to. I am very fortunate that I was born to parents who love me and for fought me and my rights all throughout my childhood, and still fight for me.

My unique struggles are invisible, so fighting for me to get the support I need hasn’t been easy on my parents, but they have been by my side anyway. They have never once made feel like a burden. To all my beautiful friends with disability out there, you are beautiful. You are not a burden. To all my friends out there who are the loving caregivers of someone with a disability, you are beautiful and appreciated. 

Disability Part 2: Nonverbal Learning Disability

Charli Dee4 Comments

Welcome to my first blog post of the year! The topic of this post is one that has been on my mind for some time. I have shared my experience as a person with a disability on my blog before, but I have had yet to go in to detail about what my disability is. Issues that people with disabilities face is one topic that I am passionate about, and one of the reasons I started this blog. I want to raise awareness on the issues we face. In this post, I want to discuss learning disability, and raise awareness on a little known type learning disability called nonverbal learning disability. 

If I were to tell a friend that I caught a cold, they would know exactly what I am going through. Chances are that I am dealing with a cough, a sneeze, and a runny nose. A name and a diagnosis leads to understanding. That type of understanding was what I craved for growing up, and what i’m still looking for in my adulthood years. I came close to that when I was diagnosed with Turner syndrome in my early teen years, and when I was officially diagnosed with learning disability in early adulthood. However, it’s not enough.

In previous posts, I have mentioned that I’ve recognized how different I am from my peers from the time I was a very small child. My Turner syndrome diagnosis answered a lot of questions for me, especially when I started to do a little research on the condition. I found that girls with Turner syndrome often have learning difficulties, and when I was diagnosed with learning disability, I was relieved to finally have a name for what I was experiencing. However, the diagnosis was Learning Disability NOS, NOS meaning not otherwise specified. Learning disability is a catch all term for a group of neurologically-based processing conditions. According to Learning Disabilities Association of America

“These processing problems can interfere with learning basic skills such as reading, writing and/or math. They can also interfere with higher level skills such as organization, time planning, abstract reasoning, long or short term memory and attention. It is important to realize that learning disabilities can affect an individual’s life beyond academics and can impact relationships with family, friends and in the workplace” .             

Examples of different types of leaning disabilities are

As already mentioned, learning disability is a general catch all term. “Not Otherwise Specified” is also a general term, and is often used to give a general, nonspecific diagnosis. When someone is given a diagnosis of learning disability NOS, it means the psychologist doing the testing recognizes the patient has learning difficulties, but can not pinpoint what his or her specific learning disability might be. As happy as I was to have a diagnosis, I still wished I could have gotten a diagnosis that was a little more specific and provided more answers. However, I understand why I was given the general diagnosis. Out of all the learning disabilities that I mentioned before, the only one that is not considered an official condition is nonverbal learning disability.

According to the U.S. National Organization for Rare Diseases, girls with Turner syndrome often “have difficulties with directional sense, learning math, nonverbal memory and attention. Affected females may also experience difficulty in certain social situations”. Most of the symptoms mentioned are symptoms that I have, and are also symptoms of people with nonverbal learning disability. Unfortunately, learning disabilities like dyscalculia and nonverbal learning disability do not get as much attention as language based learning disabilities that cause issues with communication, reading, and writing. Moreover, nonverbal learning disability is not included in the Diagnostic and Statistical Manual of Mental Disorders, which is now on it’s fifth edition (DSM-5), therefore psychologists can not use the condition as an official diagnosis. Another issue is that since people with nonverbal learning disability often have issues with nonverbal communication and poor social skills, the condition is often compared to Aspergers Disorder. Nonverbal learning disability is also compared to Autism and ADHD, and children with NLD are often diagnosed with one of those conditions, which some experts believe does an injustice to the patients because they don’t get the help they really need with the wrong diagnosis. 

Do I have nonverbal learning disability? Would be I diagnosed with the condition if it was recognized as an official condition? I’m not entirely sure. All I know is that I do have many of the symptoms recognized as symptoms of people with NLD. If It were to be made an official condition, then maybe there would be more answers. More answers means learning more about oneself, and learning how to handle struggles due to disability, and learning how to advocate for yourself, starts there.

Interview with Amanda Gene

Charli Dee9 Comments

Hello everyone! I am so excited to be collaborating with fellow blogger Amanda Gene! Amanda’s blog is a personal blog that covers her life experiences, particularly her experiences as a person with a disability. She also uses her platform to let other people with disabilities share their experiences too! I have mentioned on my blog and social media many times that I am a person with a disability, and Amanda asked me to do an interview for her blog to share my experience! I am so honored! You can click here to read the interview! Amanda’s blog and story is so inspiring, so be sure to checkout Amanda’s other blog posts as well! Thankyou for visiting and supporting my blog! Once again, happy holidays, and I will see you in the next post! 

With love,

Charli

Teacher Appreciation Week

Charli Dee6 Comments

This week is Teacher Appreciation Week. I had many wonderful teachers who had a huge role in shaping who I am today. However, if I had to pick one teacher who made the biggest impact in my life, I would have to pick my first grade teacher. Let’s call her Miss. Z.

When I was a child I had a terrible attention span. That’s the case for most children, but my attention span was short even for a child. I was easily distracted by anything. Instead of listening to my teacher, I would play with whatever might be in my hands, or I would turn my attention to what’s going on outside if I happened to be near a window. Sometimes it would be so bad that I would be daydreaming the whole class time and forget to write down the homework. My mother would get furious whenever that happened! Both my parents and teacher started to worry about me. Miss. Z started working on ways to help me, such as giving me extra attention. She also collaborated with my parents. For instance, she would have my parents sit in class with me. My parents also tried to do their part by helping me at home. Miss. Z suggested timing me while I did my homework, which is exactly what my parents did. Miss. Z recognized that I needed a lot of help, but she didn’t lower her expectations for me. She didn’t ignore my struggles, and believed that with help I could be just as successful as my peers.

All of the intervention helped. My attention span is still not great, but it has improved tremendously since elementary school. I am very grateful for Miss. Z. Here in the U.S., a teacher’s job is not easy, especially if the teacher is working in a public school. Many classrooms in public schools have classes with around 30 students. It is not easy to pay attention to that many children. Also, the work load can be very heavy. On top of planning  lessons the teacher has to grade the classroom assignments, homework assignments, projects, and tests of around 30 students. The teaching profession also doesn’t receive as much respect as some other professions. These are some of the few reasons many teachers here in America often leave the profession behind after a short while. In fact, statistics show that around 50 percent of new teachers leave the profession within their first five years, and around 52 percent of current American public school teachers have 10 or less years of teaching experience. 

However, teaching is a very significant profession. Pretty much every other profession starts with a teacher. Whatever profession a person is in he or she needed to learn how to do his or her job, and the person who taught him or her was a teacher. Also, a teacher’s job is not just to teach. In the case of children, the teacher is like a second parent, and spends the most time with his or her students outside of the parents. It is the teacher’s job to pay close attention to the students and notice anything out of the ordinary. A child may be going through abuse at home, or might have a disability (the latter was the case for me), and it is part of a teacher’s job to catch these possibilities. If a child is struggling at home or is struggling with a disability, the child will also struggle to learn. 

Despite all the hardships that come along with the teaching profession, my teacher Miss. Z still managed to notice my struggles, and give me the attention I needed to overcome them. I appreciate her and teachers like her who genuinely care about their students and take their jobs seriously. To all teachers here in the U.S. and around the world, Happy Teacher’s Appreciation Week! 

Source

Facts about the Teaching Profession for a National Conversation about Teaching. United States of America Department it Education, https://www2.ed.gov/documents/respect/teaching-profession-facts.doc

Disability: Seeing the Unseen

Charli Dee28 Comments

“We hire Shaun and we give hope to…people with limitations that those limitations are not what they think they are, that they do have a shot!”

Dr. Aaron Glassman The Good Doctor Episode 1 Season 1

I’m a little late to joining the bandwagon as the show is already in its second season, but I started watching a show called The Good Doctor. For those who don’t know, the show is about a man named Shaun Murphy who is a surgeon. He also happens to be a man with autism. I’ve been really enjoying the show so far, and was inspired to tell me story about my own experiences as a person with a disability. 

There is one word to covers the two reactions people with disabilities generally receive: doubt. There is either doubt in the person’s capabilities, or there is doubt that the person has a disability at all. In the show The Good Doctor, Shaun Murphy fits into the first category. His memory, visual spatial skills, and analytical skills are far above average. He is an asset to the hospital he is working in. However, many of his coworkers can’t see past his very apparent disability. I, on the other hand, fit into the latter category. My disability is invisible, and I often find myself having to prove that I actually am a person with a disability. 

From the time I was a small girl, it was apparent to everyone in my inner circle that I was a little different from my peers. Spend enough time me, and one would definitely be able to see my deficits, but only if that person is paying close attention. 

“You don’t seem like a person with a disability to me”, a friend once told me. 

Little did she know that it’s that same sentiment that often makes it difficult for me to get the help I need. The specific kind of disability I have is learning disability. There are different kinds of learning disabilities, and most of them are language based. That means people with those types of learning disabilities have trouble with spoken or written communication. The most well known language based learning disability is dyslexia. Communication is not a problem for me though. In fact, I’ve been told that I express myself very well, especially through writing. 

For me, the problem lies in processing. Many activities that might take other people minutes to complete can take hours for me, however, this would not be easy to notice through mere minutes of conversation with me. 

“I wish I had your brain.”, a classmate from college once told me. She did not understand that it was not a superior intellect that made me successful during my time in college. It was my work ethic and perseverance that made me successful. Like any other person, I work extremely hard for what I want, and in some cases I have to put in even more effort than the average person. 

For Shaun Murphy from The Good Doctor, his disability is front and center for those who meet him, and masks his capabilities. They don’t take the time to understand him and realize that his disability is only one part of who he is. That is a reality for many people with disability. In my case, people don’t take the time to understand that some disabilities are invisible, and you never know what someone might be going through. My take away from the show The Good Doctor and my experiences is that we might all have our different stories to tell, but there is one thing that connects us: the desire to be understood.