Join my Facebook Group for Mental Illness and Disability

Hi all,

Welcome back to those who have visited my blog before! If you’re new, welcome, and let me introduce myself! 

My name is Charli Dee. I was born with a genetic disorder called Turner syndrome. Turner syndrome is a condition when a girl is born with one of her X chromosomes partially or completely missing. This can lead to a lot of complications. I talk a lot about the complications I deal with here on my blog. You can visit those posts here.

I have also been dealing mental illness, more specifically depression. I talk a lot about my mental health journey on my blog as well. You can visit those posts here.

For a long time, I kept my struggles to myself. That means I didn’t have peer support from people who would understand what I have been going through. Part of why I started this blog is to share my experiences so people know they are not alone. Now I am starting a Facebook group so we can support each other. 

If you are interested in having a private safe space to discuss your unique experiences, join my brand new Facebook support group. Click here to join. 

Thankyou for reading and your support! Let’s continue supporting each other! 

Children with Disabilities have Worth

A very popular YouTube couple expecting their first child chose to terminate the pregnancy after discovering the baby had a high chance of being born with Down syndrome. He shared the news with complications that can come with the condition.

“Down syndrome carries a very HIGH risk of miscarriage and usually comes with heart defects, structural abnormalities, developmental issues, shorter lifespan, etc. As excited as we are to become parents, this was a gut-punch”, he shared with his followers.

Yes, Down syndrome comes with complications. However, the complications are only part of the story. Down syndrome is actually a very common, “occurring in 1 of 700 live births”. Many people with Down syndrome live fulfilling lives, with some going on to college and living independently. With medical and technological advancements, the lifespan of people with Down syndrome has increased to around 60 years of age

I have Turner syndrome, which is a genetic disorder like Down syndrome. Turner syndrome also comes with a lot of complications. Turner syndrome is a genetic disorder, and can be diagnosed in the womb through genetic testing like Down syndrome. I wasn’t diagnosed until I was around 13 years old, but it is possible my parents could have found out I have Turner syndrome before I was even born. They would have been able to choose abortion due to the fear of complications and raising a special needs child. My parents would not have chosen that route. However, they could have, and I would not be here sharing my story on my blog.

I’ve seen expecting parents express fear at having a child with Turner syndrome, just like I’m sure expecting parents do when having a child with Down syndrome. Knowing your child will have special needs can be scary. Raising a child with special needs is hard. I get it. This is why support and sound facts are important, all the facts. Yes, parents need to know life might be hard for their special needs child, but parents also need to know life can be happy and fulfilling for that child as well. It’s not all gloom and doom. 

I’m happy to be alive, and I know I’m here for a reason. I believe that YouTube couple’s baby had a purpose too. Sadly, we’ll never know what it would have been. 

Disability Part 2: Nonverbal Learning Disability

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

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

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