Hi all, if there are any strategies that work for you in an office setting, particularly for attention to detail, organization, or routine, please share them here. I’ve tried ways to make my current job work but am looking for different ways that might work for me as someone with NVLD. Thank you!
When I received my NVLD diagnosis, this is part of what it said:
"He performed well above the level expected for his age on auditory attention/working memory and expressive language tasks. ... All of these findings suggest a mild level of dysfunction in his right hemisphere as compared to strong language dominant (typically left) hemisphere functions. Nonetheless, despite this longstanding pattern, on this assessment [name] demonstrated clear deficits/ impaired functioning in memory retrieval on two different verbal-based memory tasks in the context of essentially intact performance on initial learning/memory encoding and memory recognition via forced choice responding. This finding points to dysfunction in the dominant left) temporal lobe region, which is consistent with brain MRI data showing left hippocampal sclerosis and EEG data indicating epileptic involvement in the left temporal lobe."
I remember acing the "digit span" test; I think I was able to hold up to nine numbers in my head and recite them back. But in school, I had to rely on my working memory and ability to hold a bunch of things in my head at the same time to get through school; I couldn't learn in the typical sense, and I remember that on days where I had "free recall" tests requiring essays or fill-in-the-blanks with no word bank, I had to study up until the test was handed out. I couldn't talk to anyone before the test, because if I wasn't consciously thinking about what the answers were, I'd fail (and often did anyway). I thought this was the normal way to study and I just wasn't doing it right until my NVLD diagnosis at age 18.
I don't know if anyone else here is like this, where their working memory is single-handedly what got them through the higher levels of school. If your working memory sucks, how did you get through high school/college or its equivalents, if you did? Did you have the ability to commit some things to long-term memory better than I did?
At 13, I burnt out so bad that I stopped speaking, doing my homework, attended school less. I was a gifted kid in all advanced classes and it was just too much for me. I would come home everyday after school and melt down basically begging for help before the burn out hit. This turned into full blown school refusal in ninth grade.
I was diagnosed with NVLD at 14. We took it back to the school desperate for resources. They said "We dont offer services for that." Luckily my pediatrician and my therapist were able to write that I had anxiety and was emotionally disturbed so I could do homebound school and then eventually transition into in person school again. I kept explaining to my therapist and the school that the hallways were loud, so was the cafeteria, etc. That I struggled with the social dynamics. That I struggled to organize and plan out when I was gonna do my homework, major projects, etc. I verbalized my struggles so well but, I was ignored. I told my mom that I wish someone could just live in my brain for one day and see what it was like.
They ended up taking the IEP away my senior year when I fully returned to school and was getting straight A's. My case manager said that she believed they got my diagnosis wrong to my mom. Well anyways I was sent off into adulthood and college with no resources, I was socially stunted (still am) & had many other challenges that I was never given resources to cope with. I went to college and got a biology degree shockingly. It was difficult and my GPA wasnt great but I really excelled in things like microbiology and immunology. Anyways, I went to community college first and really began to struggle when I got to the four-year. I eventually started strattera for ADHD. I got an official diagnosis of that today and the nurse practitioner re-told me that I had NVLD but, again didn't explain any ways to cope or resources.
I am a 23F and have hit another state of burn out. I am not working. I can barely socialize or go out in public for long periods without being overstimulated. I need fidgets and earplugs. I believe I lost my job as a research tech due to struggles with my neurodiversity. I have very poor fine motor skills. However, it wasn't very apparent in undergrad so I didnt think much of it. I struggled with various lab tasks using tweezers, verbal instructions, using scissors to cut things out, & the social dynamics. I also struggled with the noise of the lab and how bright it was. No one explained to my parents or I what NVLD really was and due to the high school controversy, they just treated me like I was neurotypical. They didn't understand my struggles with driving, my school refusing behavior, my social struggles or dating struggles. (often making jokes about it which caused me shame, even though I think it was well intentioned). I have only ever dated one person and that was short term when I was 22. (She ended up being abusive). I basically feel like I cant function. I am not hitting milestones the way other people do. I need support to help with functioning like a buddy as I clean or to break up tasks into smaller, more manageable tasks. Again, I didnt date in high school. I still struggle with dating now. I dont understand the small talk and whats appropriate on a first date vs a third or fourth. I dont like to be physically affectionate until I form a close emotional bond. I just feel so othered from society. It wouldve been helpful to have support for this as a child. I think it would've saved me a lot of years of serious mental health challenges.
Many of these struggles have caused me intense shame and guilt. I finally have a group of friends locally but, I didnt have any in high school. This has caused me chronic depression & anxiety. I also have been the victim of SA several times & I think my inability to pick up nonverbal cues is tied to that. I am so angry & frustrated at the neglect I faced. They acknowledged there was an issue but, gave me no resources to help with it. I mourn for teenage me and college me. I mourn how my experiences couldve been different with the right support. I just feel like I was neglected by the education system, medical system, & unfortunately, my parents (even though it wasnt their fault bc no one explained to them how to help me and the school made them believe I didnt have NVLD). I am just so angry, frustrated, and exhausted.
I do have a therapist who believes I am on the autism spectrum because I do have sensory issues, I prefer routine, struggle with change, and task switching. I also have intense interests & repetitive movements (stimming) that are unexplained by NVLD. However, I do have significant visual spatial challenges. Driving is difficult, I bump into things often, etc. I struggle so much with algebra (really any multi-step process) but, I was able to ace geometry no issue. I do think that it is possible that I have both NVLD & Autism plus the ADHD I got diagnosed with.
We (My therapist and I) are gonna get me help with vocational rehabilitation & another assesment to get a proper diagnosis. I just think about how different my experiences in my teenage and college years couldve been with all the right diagnoses and proper resources. I am also thinking of switching to bioinformatics so I can limit task switching & fine motor challenges but, also the potential of hybrid or remote would be great because many people in the workplace do not like me. I am also really bad at things others find simple like working a cash register, counting change and giving it back, etc. My supervisor when I was a research tech would get upset bc I wouldn't follow her when I was supposed to and Id follow her when I wasnt supposed to. Idk why she didnt just tell me when to follow or not? She would get so irritated.
i just think that NVLD shouldn't be a standalone diagnosis until it is added to the DSM. What is the point of a diagnosis if it doesn't unlock any resources? What are your thoughts? What have been your experiences with education, employment, dating, friendship/social dynamics?
I wish I was normal and didn't have NVLD. It's sucks to know that everything an average person would excel at doing, it's like an obstacle for me. I never knew I had NVLD until my mom said she had it. She was tested, but it wasn't a confirmed diagnosis. We both share the same difficulties with learning, understanding the world around us, and having to think differently. For me, though, it's so hard to accomplish anything. I'll study for hours and hours, something I never did before, and I still get a below average score on a simple test. When I was studying, I did very well. It's just that testing isn't for me. I've been a straight A&B student, but simple math from high school is difficult? It doesn't even sound right to say that. I just graduated high school and took easy courses, so why am i struggling with the same material.
I feel so dumb that I'm not sure if I could accomplish my dream of becoming a nurse. I haven't even started college, and so far, I can't do the simplest of the test. Everyone I know gets high testing scores, has perfect grammar, great communication skills, etc, but for me, I can't do anything if that. I honestly am giving up on myself. No one can say they have faith in me. On top of that, I don't have faith in myself. I've known I have had NVLD since 9th grade. I have every symptom and definitely know i have ADHD (not tested for it, though). It seems my cognitive and functioning skills have gotten worse. I can't remember anything anymore. It feels like my brain has completely given up . Countless hours of studying and learning hasnt gotten me anywhere. I'm known for being "awkward" or "slow," and at other times, I choose to be a mute to prevent further embarrassment. I have no clue how I can survive college and life in general. I also don't have anyone to talk to/help me either even though I've asked others to. At this point, I'm just a lost cause.
This is my first post in this community, and I apologize for the rant.
I have NVLD as well as a few other mental disorders thanks to experiences of trauma and neglect. I'm 45 and was diagnosed with everything in 2016.
The disability benefits place is going to force everyone receiving benefits to make an employment plan, do workshops, and whatnot to get everyone ready to go back to work. I already went through all of this trying to work and ended up being referred for disability benefits.
I'm just freaking out and need some encouragement and ideas on how to handle this whole situation.
This disorder makes it very difficult to keep a life sustainable job, especially because my visual spatial skills are horrible, and my fine motor skills are even worse!
So I can't drive any kind of vehicle or bike without being a huge danger to myself and others.
I drop stuff all the time and have the weirdest injuries ever. Example: picking up a glass jar of food, turning it to read the label, and I gave myself a huge papercut. It was humiliating because I was working at the time and I was still very new.
My writing and typing are very slow, and I make frequent mistakes.
I'm extremely clumsy, and if something is able to be tripped on, I will trip on it at some point. It's ridiculous sometimes.
I have zero sense of direction and get lost very easily.
My processing speed is very slow, and the majority of things take me a lot longer to do than an average person.
After working for 8 hours, I would sleep extremely hard and sleep in frequently the next day.
There's way more, but it'll turn into a novel if I keep going, lol.
Soooo lots of jobs are out because of these issues 😭
I'm so frustrated because NVLD gets in the way of being able to work, and everyone who I've encountered really doesn't know what it is, including in the mental health industry.
I also live in a very car centric city and have PTSD around taking transit, so that severely gets in the way of leaving the house.
But my verbal abilities are above average, so that makes me look more capable of producing work faster than my body will allow me to do without burning out.
😭