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NVLD Bloggers

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The Importance of Challenging Yourself Part A , by Eileen

By Eileen, NVLD Bloggers

As I was leaving middle school and through high school my IEP teams tried to guide me in a different direction as they believed my stated plans were unrealistic and would cause unnecessary stress. Unfortunately, this experience doesn’t seem to be unusual so  I would like to share my examples and explain how your IEP team will realize your choices were correct and will become very proud of you. Read More

How NVLD Students Can Be Underestimated and Misunderstood Part A , by Eileen

By Eileen, NVLD Bloggers

As a student with an NVLD over the years, I was greatly underestimated and very misunderstood at times. Not only did I have a different disability from others but also wanted to challenge myself more than others. This was especially hard as so few could really understand how difficult it was for me to fully understand non-verbal communication and to appropriately keep up with the social demands. In addition, the school day could become very overwhelming with all the changes at the secondary level and working with multiple adults in the elementary school years.  Unfortunately, my experience doesn’t seem to be unusual and I would like to share my difficult experiences and offer insight on how things can become easier.

One of the first times I was misunderstood was during gym class when I was sitting in the corner of the gym rather than taking part in a tag game. This made my gym teacher frustrated as everyone else was already completely engaged in the game. However, the truth was that because of my gross motor skills deficits, I had no clue how to put on my jersey, and having social communication deficits it was difficult to ask for help too.  Therefore I just sat in the corner rather nervous and hoped no one would notice but of course, she did immediately. While interacting with me fortunately my gym teacher then learned I also struggled to ask for help and the situation never happened again. .

The next example happened when I was receiving some supportive services 1:1  as it caused me to shut down and become uncooperative with the adults working with me as a young child. This was so overwhelming for me.  The reality was in most situations this happened because there wasn’t another student in our group with similar academic and social skills so giving me individual care made more sense but of course, I couldn’t understand this. As a result, this caused adults to become very frustrated with me. Fortunately, Rhonda Fletcher, my APE teacher, was a problem solver and started to use the push-in model more regularly with me, and by doing this she was able to see how much I enjoyed her and realized 1:1 interactions could be very hard for me. As a result, the speech and occupational therapist became aware of this and went out of their way to make me more comfortable and in turn, each session became a better learning experience for me.

The following example happened in elementary school: teachers believed my reading level was lower than it was so I was grouped with the other resource room students for group work and projects. This was rather frustrating for me as  I would always finish first and occasionally they would copy my answers but because I had empathy so I understood if this was a math group they would be getting frustrated with me. One of the reasons why I was underestimated was due to the fact they didn’t understand my added speech impairment was motor-related not language-related. In addition, I had visual processing deficits so I read silently at a slower pace. Therefore it made sense but it was still discouraging, however, just like the other situations everyone eventually understood reading was a strength for me. This led to my teachers letting me work with non-disabled peers.

Now my last example for Part A. It was so hard for others to understand why transitioning to classes took longer for me. One of the first reasons was  it took me longer to open up my locker. This was because my fine motor skills deficits and my added spatial skills deficits organizing my locker took a few extra minutes too. In addition, once I got to my classroom having these deficits made getting prepared for each course rather difficult for me, and at times my teachers would have to delay the start of class. What was hard about this was it required the teachers’ aide to help me a great deal which made the other students with IEPs very frustrated as it seemed like she liked me more as she always helped me first before going to check on the other students. Fortunately, through open communication, my educational team developed a greater understanding of this challenge and did whatever they could to help so transitioning wasn’t a real challenge anymore.

Overall it is never easy but it is important to remember NVLD is a very misunderstood disability. So please be patient and be very honest about your feelings in a kind and understanding way as most difficult experiences can turn into positive experiences.

Eileen

Eileen is a Project Social Ambassador and blogger for The NVLD Project. She loves helping others understand they can achieve their goals and dreams through hard work and dedication.

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Letter for NVLD (non- verbal learning disability) Advocacy, by Lindsey

By NVLD Bloggers

Below is an example of letters I would right:

Hello Mr. C,

I was wondering, with your experience in science through the education system, if you would be able to vocalize about the difficulties with nonverbal learning disability-identified students?

It seems to me that they are adapted perfectly for scientific pursuits, they are honest and make observations about everything. They have a semi-audio and visual memory which can be very useful for remembering facts and can be a great strength.

This disability is a spectrum. As we’ve seen with many disabilities one size does not fit all, the disability affects individuals differently and they have different symptoms.

One of the pitfalls of individuals with a nonverbal learning disability is understanding social cues, this is usually attempted to correct with behavioral therapy, but it is unproductive because the brain has a defect in the right hemisphere that affects the white matter, and it seems that the brain can’t compensate regardless. The individual is born that way, examples: similar to trying to change the color of your skin, or if you identify as a homosexual (disclaimer: this is not meant to be offensive, it just seems that it’s a similar struggle).

There isn’t medication to help for this disability, like for example ADHD – being prescribed Ritalin, it is not as well understood as dyslexia and has more complex parameters to explain to society. For example with dyslexia: doctors can identify the problem by watching the person struggle with reading and can see a tangible situation that is easy to understand, and can be easily explained to the masses.

Many people with ADHD also struggled a few years ago with the same concept, but because it has been researched, it is more widely accepted in society.

This is not an easy task to take on, any advocacy for this disability is diligently needed, but unfortunately, the individuals that have it, with their social cues issues, are not well-liked, and they seem to conflict with each other so they unable to organize because they’re all dealing with the same difficulties, and just trigger each other.

Please see the attached letters.

I appreciate you taking the time to read this email,

Lindsey

PS: I appreciate any help you can give.

Tangent note disclaimer:
I graduated in a scientific field, and just because I graduated in a scientific field does not mean that that is the right path for every person with NVLD, I truly believe that when you figure out something that you want to do passionately you have to face adversity.

It is easy to say it and difficult to apply it.

I only have my own experiences to rely on, and even through diligent reading of scientific papers from proper sources, it is important to question all information that you read (understand there are biases), and how you’re affected by the individuals around you. At the end of the day, look at the relationships you have, and ask yourself these questions “is this person good for me?”; “Do they promote the kind of person that I want to be?”;  “Do we help each other achieve our goals?”

Lindsey

I’ve been through the cycle of being ostracized and stereotyped and seen the pitfalls of this Learning disability.

I believe changing human rights procedures to identify this as a learning disability on the DSM-5 is a productive way to contribute to helping NVLD individuals and promoting research and human rights legislation.

Share your own story

Don’t Beat Yourself Up , by Barbara

By NVLD Bloggers

I am a 62-year-old woman with undiagnosed NVLD.  My  28-year-old daughter has it, more severe than me, but I see bits and pieces in myself.  As difficult as it has been to watch my daughter struggle with this learning disability, there has been a silver learning.  I always felt inferior, comparing myself to others.  Like I wasn’t good at anything.  Now I see that there was a reason for my struggles.  Those people I envied were fortunate to not have NVLD, they were not better than me.  It is clear why I  have had self-confidence issues.  Watching people around you do things with ease that you struggle with isn’t easy. Read More

Possible Reasons Why Many With Learning Disabilties Still Don’t Graduate College: Part A by Eileen

By NVLD Bloggers

While more students with learning disabilities are attending college the overall graduation rates continue to be relatively low. One of the theories for this could be that students attending schools that don’t offer nearly enough support either because they were unaware of all the colleges that have structured support programs or the high cost associated with them. Read More

The Importance of Taking Risks Part A , by Eileen

By NVLD Bloggers

Growing up while overcoming an NVLD, one of the things I noticed was that a large percentage of those with disabilities didn’t take as many risks involving decisions for inclusion in school and life outside of school. While the recommendations they were being offered were good, at times more could have taken place if both families and IEP teams stepped out of their comfort zone to try new methods and experiences. Read More

An Open Letter To Today’s Youth Who Face Gross and Fine Motor Skills Deficits Connected To Their NVLD , Eileen

By Eileen, NVLD Bloggers

To Youth with an NVLD- Growing up facing fine and gross motor skill deficits did bring some confusion as it seemed I was the only one who had these difficulties. Early on it caused me to be so sad when my mom said we needed to leave for OT or when my APE teacher would say things like “Eileen you’re with me today so we can do a music and movement activity that involves jumping, doing jumping jacks and skipping.” Read More

A Prelude to Starting Over , by Justin

By NVLD Bloggers

When I first was diagnosed with NVLD I was 18. I was a senior in high school. Long story short, starting in middle school I often struggled with time on exams and struggled to keep up. This continued through high school although people thought I was smart, my grades didn’t reflect that and because of this I never really liked school and I didn’t think I was all that smart. Read More

Walking the Tightrope , By Malka

By NVLD Bloggers

My observations of a professor-friend about twelve years ago led me quite accidentally to the conclusion that he had Asperger’s Syndrome. After further research on how Asperger’s is expressed in women, I became largely convinced (especially on bad days) that I was similarly afflicted. (This was a few years before the removal of Asperger’s Syndrome from the DSM-5.) Read More