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Nonverbal Learning Disability Affects Me, but Does Not Define Me

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I grew up in a relatively large suburb just north of Boston, Massachusetts. I grew up in a typical middle class family. My father was a truck sales manager and my mother stayed home with my siblings and I.

My sister is two and a half years older than me. People would always describe her as exceptional. She was extremely intelligent and hit all of her developmental milestones early or right on time. By the time I was a toddler, my parents were very concerned that I had not hit those milestones the way she had. I did not walk until I was almost 18 months old. When I was in preschool, the teachers expressed further concern about issues such as my lack of concentration, being overly sensitive, and sometimes shying away from my peers. My parents were also concerned with how clumsy I was. I was constantly tripping over things and dropping things.

My preschool recommended occupational therapy to help combat some of these issues. It did help, and my parents thought we had turned a corner. The feeling was temporary, however, when it was thought I had begun to regress.

My parents were determined to get me help, despite the challenges they were going through at the time. My mother had just had my younger brother, so they were also dealing with a new baby at home. My parents had three children under the age of 5 that all needed the same amount of attention and care. Despite that, my parents had begun contacting doctors and specialists to figure out what was happening with me.

When it comes to testing, I’ve pretty much done it all. My parents had me tested for ADHD, autism, and OCD, among a myriad of other things. However, after all of that testing, my parents still did not receive an answer. By the time I began kindergarten, I was in OT three times a week and speech therapy twice a week. Although these services helped, the school system was reluctant to provide them to me because at the time I still did not have a concrete diagnosis.

When I was almost 6 years old, my father took me to see yet another specialist in Boston. Although not much is known about NLD now, when I was tested for it  back in 1999, it was virtually unheard of. When the doctor presented this diagnosis to my parents, there was an overwhelming sense of relief. My dad described it as my “quirkiness.” My parents didn’t use the term nonverbal learning disability, as they felt I was too young at the time. The doctor did tell my parents it was not a “firm diagnosis” but it was the inclination she had.

The doctor recommended I continue the OT and speech therapy as well as other supports. I had received these “pull out” services throughout my entire time in grammar school. I received other supports such as a special seat cushion to help me stay alert during class, and was offered an Alphasmart device due to my very poor handwriting. Finally, I was in peer friendship groups to help with my social skills.

Growing up with these supports, I knew I was different; I just could not put my finger on what was “wrong with me.” My mother described it as extra help with math, or my father described it as quirkiness. I never knew I was living with a nonverbal learning disability.

The last week of sixth grade, in June 2005, I was in my speech and language session. The speech pathologist decided to describe NLD to me. I believe her heart was in the right place and she was just trying to educate me. I was in shock; I had no idea NLD existed, nor that I had it. It was a lot for a 12-year-old to take in. I was upset with my parents that it was kept a secret from me for so long. My mother was more upset than I was, I think. She wanted to tell me herself, because she knew how she wanted to explain it to me.

The rest of middle school was hard. I was bullied severely, and my social awkwardness and quirkiness did not help. In October 2005, I told my parents I felt suicidal. I was unable to grasp my NLD or some of the hurtful things the kids were saying to me. My peers were telling me that I should kill myself, and that no one would miss me.

My parents felt the public school environment was no longer right for me. They knew I needed a place where I could thrive and be the best I could be. My parents wanted to send me to a school for kids with learning disabilities like my own. However, my parents first wanted to get a “firm diagnosis.” In November of that same year, I was “officially” diagnosed with a nonverbal learning disability, as well as depression and anxiety disorders.

After what seemed to be a long and never-ending battle with the public school system, in May of 2006, at the end of my seventh grade year, my parents pulled me out of our public school system. Our school system had finally agreed to help pay to send me to a school for children with learning disabilities.

When I first started at the new school, I found it hard to fit in, and I thought my parents had wasted all their time, efforts, and money. I felt as though I couldn’t fit in anywhere. It wasn’t long before I started to make new friends and flourish.

It was hard for me to believe that when I graduated from high school, I was on the honor roll and I was able to give a speech in front of my peers. I talked about my journey, how it has affected me so far, and how I believed it would affect me in the future.

I have been going to college on and off since I graduated from high school. It is a big adjustment, and I think I may have bitten off more than I can chew. I am now 24 years old. I am working full time and pursuing my passion of writing. I am very blessed. I have a loving family, supportive friends, and a strong faith that keeps me going every day.

One of my future goals is to write for children with NLD and their families to know they are not alone, and that there is someone out there who is wants to help them. I know that I can do anything I set my mind to. NLD affects me, but does not define me.

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

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Thinkstock photo by Ryan McVay.

Originally published: May 21, 2017
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