Eileen

In my previous piece, I wrote about how my IEP teams tried to guide me in a different direction as they believed my stated plans were unrealistic and would cause unnecessary stress. Regrettably, my experience doesn’t seem to be unusual which to me is very disappointing. Now I will continue with examples from my experience and demonstrate how an IEP team will not only support your choices but will also be very proud of you. Through your own determination and work ethic. they will see, that lowering the expectations isn’t always the right answer. Read More

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

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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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

In my previous piece, I discussed how students with an NVLD can sometimes have too many services and modifications to address different areas of weaknesses. However, I do believe services for many  NVLD students are typically necessary at least in the elementary years as gaining these skills is so important to help make school and life as successful as possible. However, I do understand your child’s frustrations as it took me a while to understand the need for these services too. Read More

First Example- Growing up I was fortunate enough to have widespread support though the family that made the strongest impression on us was the Pinkerton Family as never once did having an NVLD  matter.  This led to many hours of playing at each other’s houses. With our mothers loving the outdoors many winter days were spent playing in the snow and summer days were spent in our pool. In addition,  Mr.Pinkerton had me on his baseball team despite my poor gross motor skills. Additionally during my high school years when the social deficits showed up more, the Pinkerton kids never once ended their friendship with me and their parents were always there for our family too. It truly set a great example for not being afraid to reach out to neighbors for support or be afraid to join outside groups.
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Growing up with an NVLD, one of the things that greatly bothered me was how clear it was that students weren’t being encouraged to challenge themselves a little by joining activities, and having new experiences. It truly took some time for my support team to understand my parents’ philosophies. However, as time went on it ended up being a great learning experience for us all. The truth is students with an NVLD and other disabilities loved challenging themselves more than some realized. Read More

One of things I learned during my high school years as a student with NVLD is that having the same resource room teacher all four years was so helpful.  My resource room teacher had such a clear understanding of my NVLD and it made it easier to truly reach my goals. Another thing I learned was that by speaking to your school counselor ahead of time to request teachers is so helpful too as regrettably not all teachers are so accepting of students with disabilities. Some districts do this automatically and others don’t so it is important to speak up especially if you are a hard working student. Read More