Frustrated woman.

The Question I Hate Most as a Person With Nonverbal Learning Disability

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We live in a society that believes in personal responsibility. Many people feel that amount of effort and result are always completely and directly correlated. If something you do doesn’t meet an accepted standard of “good enough,” then you have “failed” and it’s all your fault.

In most cases, I agree. It’s the philosophy I was raised with, and I can see that it’s generally true. However, when it comes to disabilities, this idea can fall short.

I have nonverbal learning disability. It’s a condition similar to autism.  It includes some autism symptoms, and also comes with executive function and visual spatial difficulties, learning disabilities, and motor skill and balance problems.

Nonverbal learning disability means the effort I put into things is almost never reflected in my result. Whether it’s a grade, a test score, or a task, my best efforts always seem to equal “failure.”  Considering that I grew up undiagnosed, being blamed for my constant “failures” means my self-esteem has taken a major beating. I’ve lost count of the number of times that a frustrated authority figure has asked me “Well, how hard did you really try?” I have serious problems with this “question.” Not only is the phrasing incredibly rude, but it’s not really a question, and there is no right answer.

My amount of effort, like my disability, is invisible, but that doesn’t mean either is nonexistent. If anything, I try harder than everyone else because I have to work that hard just to get by. I’m doing the best I can, but it feels like I can’t make anyone believe that.

Often people aren’t asking how hard I tried, just stating outright that I didn’t. They accuse me of choosing to fail, and saying if I had only tried harder, I would’ve done better. As much as I wish this were the case, it’s not always. Since this is a statement rather than a question, there isn’t a right answer. If I lie about how long or hard I actually worked, then I failed because it obviously wasn’t enough. If I tell the truth, they say the work should never take that much time or effort, so I’m obviously exaggerating. Even though there is no right answer, I’ve come up with a few:

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Sarcastic answer: Harder than I’m trying not to slap you for asking.
Real answer: Harder than you’ll ever understand.
Truth: It doesn’t matter, because it will never be enough.

I believe the answer people want is for me to agree that they’re right. I’m supposed to admit that I
didn’t really try, take full responsibility for my failure, and never let it happen again.  Unfortunately, the answer they want isn’t one I can give. I did the best I could, I did try, and I refuse to agree that I didn’t.

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What I Wish Others Understood About Nonverbal Learning Disability

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When I was diagnosed with nonverbal learning disabilities, I was living in a youth psychiatric ward due to suicidal ideation. Everything was confusing me; I felt drowned by life itself. For my first 18 years, I had taken in all aspects of the world with alternative comprehension. This was not comprehended.

Nonverbal learning disabilities are still widely unknown, but it it is a disability that can alter your entire perception and experienced reality of the world. It is not outwardly apparent, and those with it are often overlooked and can easily feel lost without proper help.

I never knew there were reasons that could explain why I struggle. But even before my diagnosis, I identified what I thought might be a difference. Without access to help, research or a wide enough recognition of NVLD’s existence, I had no hope of finding an answer of any kind.

NVLD can create communication barriers — with others, and most frustratingly, within yourself. Because I lived for so long with social and emotional differences I couldn’t understand, and wasn’t physically able to communicate, I’ve always had anxiety, and I developed depression at a very young age.

At 17, I wrote the following about my confusion. I wrote it few months before being admitted into a psychiatric ward, and a few months before being diagnosed with NVLD.

Symptoms of depression often list a poignant tendency toward slow melancholy. I can make sense of that as a truth I’ve encountered, but I find what adds the heaviest struggle to my days is compressed and fluttering fear. A general fear for life is just part of this condition of being me. It is very hard to want to live when anything containing excitement and life causes a flooding overflow of incapability. I find the levels rise in response to more and more. How can I be “too” excited? How can I feel oncoming combustion from what should make me happy?

And what confuses me most is — I’m not even happy, not even excited, and not currently living a lively life. And yet I instantly back away from anything of interest to me. Stories I know I’ll like, activities I know appeal to me — everything within me tells me that by approaching any closer, I’ll spoil it all. I often notice it with subjects built upon skill. I feel I’ll never know enough to succeed in the way I’d wish to, and can’t bring myself to practice or study. I feel there is too much I don’t know, and a constantly growing amount that I can never know. It all rushes around in a painful, shocking kind of electric excitement, and instantly I want out of it all. My general intake overflows and it all seems too far away, too unattainable, too painful to attempt to grasp and comprehend.

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Why? Why does life promote such fear? I thought I valued learning and joy and embraced the open possibilities life brings. But these are the very things that drown me. I heard about an analogy used to visualize anxiety; it was to think of a cup holding water as a level of anxiety. Everyone has a cup, but everyone’s water level is different. Some people’s levels start higher up due to a chemical imbalance — an anxiety disorder. These individuals also find their levels increase faster than others. Some anxiety-inducing situations leave a lasting effect; this could alter anyone’s resting level and make them more susceptible to overflow.

I feel like what I’m experiencing is a constant state of “filled to the brim.” Filled to the brim with anxiety, with stimuli, with life. My cup is ready to pour over at the appearance of anything “extra” — good or bad. Too much is too much. I often hear the advice “listen to your heart.” But I think what my heart wants is some silence. When I listen to my heart it says everything is too loud, it says it is too tired and it says it would be nice to be able to stop.

I was so confused by my confusion. Now, after rigorous testing, I know there’s a name and reason behind the alternative process my brain undertakes when attempting to understand, analyze or merely passively experience. It’s easy to see now that my whole written reflection and confusion about confusion was my way of depicting the maze my unidentified learning disability had created for me.

A nonverbal learning disability is primarily characterized by a large discrepancy between verbal and nonverbal skills. This combination creates comprehension challenges because the brain can’t communicate with itself in a timely manner; it’s processing information at two different speeds. For me, it’s two very different speeds. My verbal skills listed in the 99th percentile, my non verbal ones in the 12th. Those numbers were the concrete proof I had to indicate a reason why I always struggle to interpret myself and my surroundings. The verbal part of my brain that depicts truth through language is unable to work collaboratively with nonverbal spatial and visual intake.

Because the discrepancy is such a drastic one, it affects my working memory. Learning this information was a really important part of finding an answer. Working memory was described to me as a shelf your brain uses to place current information it is processing and comparing. Because my brain goes at two very different speeds, this shelf is extremely small. It has, say, 3 spaces instead of 15. It means my verbal skills can’t work to their potential and get very tired and frustrated attempting to cross-analyze with what they expect should be there, but isn’t because the nonverbal equivalent isn’t there to hold up its end. It is the ultimate recipe for instant overflow.

I live in constant fear of overflow. It’s not comparable to the definition of “overwhelm;” it feels like a bursting flame of frustration and hopelessness. It arises whenever I need to handle more items than I can hold on my shelf — emotional, constructional, analytical, social. All at once I identify more circuits of understanding than my shelf can hold, and at the same time, I know I can’t even hope to untangle them into an order. The overflow is a drowning breathlessness from the prospect of connecting it all, but running out of energy and air before being able to start laying it out. It is wanting to die because of life; it is suffocation because of breathing.

In the past year, I’ve seen how crucial communication can be. When mixed with mental illness, a lack of communication skills can be life-threatening. Because of NVLD, I sat in complete silence with every counselor I ever had. I experienced that same overflow of information I was unable to process. Now that I know I have NVLD, it makes sense that the process of interpreting nonverbal emotions into a verbal structure is one of the hardest things for me.

NVLD deserves research and wider awareness. NVLD no matter what support is available to you, if you can’t communicate, you have no choice but to live trapped in solitary isolation. NVLD research matters because it’s a disability that can cause a fear of living while simultaneously creating an inability to communicate. NVLD matters because it is a disability that can affect the entire outlook and world experience of those who have it. With more knowledge, I’m sure this experience could be made into a better one, rather than a harsher one.

My hope is that one day, this disability will be more widely recognized, and kids who see things as I did will be given help and an explanation.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

This story was originally written for The NVLD Project.

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When a Professor Said My Accommodations Were 'Unfair' to Students Without Disabilities

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Being an aerospace engineering major has been expectantly difficult, in unexpected ways. I knew this would be a hard career path for me to follow. As a woman, I have experienced sexist behavior in my flight training before and predicted its presence in this male dominated degree as well. I have a type of dyslexia, called dyscalculia, that effects the way I see and work with numbers. So, I anticipated my disability would cause me to struggle while studying rocket science as well. However, I never would have thought simply having a disability would cause such an issue.

Because of my disability, I get certain accommodations from my university. I am allowed a calculator on every exam, I get extended time on exams and take them in a reduced distraction room that is separate from the rest of my class. These accommodations are meant to aid in “leveling the playing field,” so to speak, and every professor is legally required to provide them. Even though they must provide them, not all my professors have been happy about it.

A little over a year ago, I was discussing my accommodations before an upcoming exam with a professor of mine. Even though he signed the agreement to the accommodations from the university, he was still confused about the whole thing. He then proceeded to express his feelings of how my accommodations were “unfair to the other students.” I knew then that the semester was going to be an uphill battle.

It seemed as though at every opportunity, my professor made taking the class more difficult for me. I tried to avoid setting up my accommodations with him and sought out help from the graduate teaching assistant (GTA) instead. Before the next exam, I was discussing the accommodations with the GTA when my professor interrupted us just as I was reminding him that my extended time is double the class time. My professor informed me that he wasn’t required to give me the double time for my exam and he would consider the extension.

A wave of anger washed over me. I reminded him of the contract he signed and that he legally must provide the accommodations. I panicked and tried to calculate my exam time with my start and stop times. I struggled with it as mental math is something my disability greatly affects but I had to make sure I was being provided for since my professor wasn’t. Luckily, he allowed for the correct amount of time, out of the kindness of his heart, I’m sure.

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Eventually, the final came. Throughout the semester, I would typically start my exams at the same time as the rest of the students and go longer. For the final, I was worried this would cause a problem for me. I had another final for a different class shortly afterwards and felt as though that did not give me enough time to prepare for the next exam. So I proposed to my professor that we start my final exam 30 minutes earlier.

He dragged his feet over this trivial matter of just 30 minutes. First, he couldn’t do that because he arrives on campus at 8:00 and not 7:30. He told me starting that early was a lot of effort and he just didn’t see how it would be worth it. So, I suggested the GTA proctor it instead. That wasn’t acceptable either. I then recommended that the department secretary provide it. That also wouldn’t work because the department office opens at 8:00 and not 7:30. He eventually told me he would think about coming in at 7:30 and he would let me know.

I did end up taking my exam 30 minutes earlier, but my professor never let me know of his decision. I was left guessing at which time my exam was until that morning. I showed up at 7:30 just to be safe and caught him right outside his office.

My professor’s actions left me feeling isolated and as though my aptitude was not up to the standardss of someone who truly belongs in engineering. This experience further increased my depression and anxiety as well. My university had failed me by failing to train their faculty. I have since learned that faculty members are not required to take any kind of training from the university regarding students with disabilities.

After this experience, I have since advocated my own concerns and ideas for improvement to several campus officials. Despite some positive reactions, I feel as though not much has changed. Even in this current semester I have experienced discrimination. When explaining to a professor that I am training a service dog that will start coming to class, he inquired if I have asked the rest of the students if they were OK with me bringing a dog. He suggested that the class vote on the matter, as he thought it might be distracting to everyone else.

What will it take for my university to start listening to my concerns and train their professors? When will I be provided what I need to be successful without it being a question of fairness to those without disabilities?

After the comment about my service dog, I went to the office that provides the accommodations for students with disabilities. They were shocked about what had happened and informed me of my options. They also notified my department chair and he finally agreed to mandatory training at the next faculty meeting, something I had previously suggested with no results.

After the mandatory training, I have been able to bring my service dog to aid with my depression and anxiety symptoms, and receive my accommodations for dyscalculia without much struggle. There is always room for improvement, however, and I will continue fighting for it.

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Thinkstock photo by Monkey Business Images.

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Why My 10-Year-Old Daughter Wrote a Book About Disabilities and Adoption

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My daughter Mariah is 10 years old. We met her for the first time when she was 4 years old and living in a Ukrainian orphanage. She had been there her entire life. Mariah was born prematurely and as a result has cerebral palsy. In Eastern Europe, children with disabilities are often not valued as members of society and their parents are encouraged to abandon them at the hospital. Mariah had spent four years without proper nutrition, therapy, intervention, or a family. At the time of our embassy visit in Kyiv, she was 4 years old, unable to walk or stand, and weighed 24 pounds.

Adoption is entering into a child’s life and embracing everything about them that they’ve been carrying alone. As a parent, its not easy to jump into a book that’s already 12 chapters in the making and figure out how the story needs to go. We fumbled along for some time with the best ways to help Mariah. Part of figuring out how to help her was to first figure out what she needed help with!

During our years of trying to get Mariah the appropriate services in the Special Education system, she experienced discrimination, a lack of understanding from staff and peers, as well as massive damage to her already fragile self-esteem from being punished often and singled out for behavior caused by her physical and emotional differences.

We made the choice to homeschool two years ago, and as a way to help Mariah process all that has happened in her young life, I encouraged her to write about it. I told her that if she wrote a book, I’d help her edit and publish it, so write she did!

Owning her story and becoming a published author has been a wonderful thing for Mariah. This is something she did that is 100 percent hers. She plans to continue writing about life with cerebral palsy because she wants to explain what makes her different, but also show what makes her the same. She says differences in her abilities often cause her anxiety when meeting new people. She wonders how they will view her. Writing this book has empowered her to feel like finally she is able to affect what is happening in her life, and life isn’t just happening to her.

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Mariah wants to see this book in school libraries, and as required reading for staff and students to help educate about adoption and disabilities.  She hopes that if kids see this book in the library, they’ll choose to read it and gain a better understanding of how to be a friend to peers who might struggle with being different. She wants school staff to read her book to gain a better understanding that not all disabilities are visible. Dyslexia, dysgraphia, anxiety, visual impairments and PTSD are common diagnoses among both adopted children and children affected by cerebral palsy. These invisible disabilities were largely ignored while Mariah struggled for years. She hopes to raise awareness of the devastating impact that ignoring learning disabilities can have on a child.  As she puts it, “I wrote this book for kids like me.”

Mariah’s book “Gotcha – An Adoption Story” is available on Amazon.

Mariah holding her book.
Mariah holding her book.

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The Hurtful Words About Learning Disabilities I'm Still Struggling to Move Beyond

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Back in 2013, my high school history teacher told me after class one day that I was going to be living off the government, on the streets and would never be able to do anything with my life because I was “stupid.” He said I should be ashamed about having a disability.

I told many different people including friends, teachers, the principal, and my parents about what he had said to me, and they all looked at me in disbelief, saying “He would never say something like that,” or “I don’t believe you,” and so on. He was the most liked teacher in our school. Teachers, students, and parents loved him, and he got away with saying those things.

I have a learning disability, in almost everything: math, reading, writing, social things, memorization/memory and much more. It also doesn’t help that I have clinical depression and anxiety. 2013 was my senior year of high school. I was just about to graduate in a few short months and I was pumped to see what the world was going to throw at me. School was very hard for me to get through, and some of my grades showed that, especially in his class. When he said those words to me, I felt like everything I was working for was going to be for nothing. I kept on thinking to myself, why should I try if there is nothing for me?

I’m just starting college at 21, and it has been very hard to get myself motivated to do anything. I kept on telling myself that I’m never going to do anything with my life because of my disability. I hated myself for not being able to figure a simple problem out for a college class. I hated how guilty I felt when I had to tell my professor that I had a disability. I hated the looks people gave me when I told them I needed something to be repeated or spelled out. I hated not having the motivation to get up and do anything. I hated not understanding the assignment, and the embarrassment of asking someone for help.

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I hated being different.

It has been almost 5 years now, and I still have those words stuck in my head. I wish I could tell my past self that those words don’t matter because they aren’t true. Heck, I wish I could remind my present self that his words don’t matter, but it’s hard when part of you believes them to be true. I wish I had a motivational ending to my story, but the only advice I can give you is don’t give up. I know it’s a cheesy line, but if you give up you are giving in to those words. Prove them wrong!

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What People Don't See About My Nonverbal Learning Disability

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Most people are surprised after they hear that I have a nonverbal learning disability and I am able to speak. Most people are also shocked to find out that I have any disability at all, because I have a seemingly “typical” life with a college degree, a job, family and friends, and my own apartment. Unfortunately, this is the side effect of having a disability that is not well-known or even researched enough to reach a consensus to put in the DSM.

When people look at me, they often don’t see that I have trouble processing their body language. Their perfectly innocent facial expression could confuse me. Their tone of voice may sound harsh to me and make me upset. If they tell me something sarcastic, I may or may not get it right away, or I may not understand it at all. If they are laughing at something, I have the tendency to take it very personally. They don’t see that I have trouble meeting new people or in the past, holding down a job.

When people look at me, they don’t see that nonverbal learning disability causes me to have trouble organizing and keeping my life together. I have trouble with time management and I am always running behind. I always end up losing my keys, or I forget I had an obligation that day. I have trouble sticking to a schedule to keep my apartment clean, and I will often just say “forget it” because it becomes too overwhelming for me.

When people look at me, they don’t know how much trouble I have navigating the streets. I get lost frequently and take wrong turns. I still have to use my hands to determine left or right. I cannot go anywhere without my phone GPS, and people don’t understand why I have to have my phone charged at all times.

When people look at me, they don’t see that I have poor fine motor skills. I cannot open the childproof caps on medicine bottles. If something is screwed on too tightly, I cannot open it until someone is around to help me. I have trouble picking up small items and I have little grip strength. When people see me, they don’t see that I have visual spatial issues. They don’t see that I can’t drive because I have poor depth perception. They don’t understand why it’s terrifying for me to climb down stairs or take an escalator, because it feels like I’m falling. They don’t understand why I am constantly bruised and scraped as an adult because I tripped into something, or fell because I tripped over something.

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When people see me, they don’t see that I have sensory issues. The small noises people make will get to me and cause anxiety. If someone is chewing too loudly, it will make me angry, especially if I’m trying to concentrate. A lot of scents are too much for me and cause headaches. A lot of fabric is too itchy for me to wear, and I’d much rather be in sweatpants and a hoodie.

When people see me, they don’t understand why I am so anxious and reserved. They don’t understand that because I’ve been through so much and I’ve felt shunned so much of my life, I have trouble coping with the world around me. They don’t understand that living life is overwhelming for me and I just want to stay home a lot of the time. They don’t understand that what I go through is exhausting and takes a lot out of me. It’s exhausting having to explain what my disability involves and why I behave a certain way.

Nonverbal learning disorder is legitimate, and while I’m fortunate that I have a milder case and a great support system, I still struggle. It is my hope that I can raise awareness and hopefully someday, nonverbal learning disorder will find its way into a future version of the DSM, so future generations can get the help they deserve.

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