NVLD: A Journey Through Education, Advocacy, and Passing the Torch, by Kayli

I can’t say that I remember the exact moment I found out that I had nonverbal learning disability. There wasn’t really a time that anyone sat me down and said, “You have NVLD.” There is one memory, however, that sticks out to me like a sore thumb.

In 1st grade, my teacher, Ms. Marlar, would have us practice our handwriting. She would write sentences on the board that we would have to copy down multiple times, and it was the hardest thing I’d ever had to do. Because of my poor motor skills, holding a pencil hurt my hand. Because of my visuospatial issues, it was a chore to transfer the words between the board and a paper sitting on my desk. So, I did what most kids do when they find a task too difficult: I hid the incomplete evidence away and pretended it was done. But Ms. Marlar, like most fantastic teachers, was way too smart for that. She’d gone through my desk and found all of the unfinished papers stuffed at the back. She’d then thrown them all into the trash. However, before they could be covered up or the trash emptied, she’d pulled me over to look at them.

I still remember the look on her face as she asked me, “Do you know what these are?” I also remember how crushed I’d felt that I’d disappointed her; I really liked her. The fact that she would become my first advocate in uncovering my disabilities was just one of the many reasons. (I’ve never been able to track her down to thank her, but if she sees this I hope she takes to heart that she set me on the path to the success I have now.)

After Ms. Marlar had talked to my mom about the issues she’d noticed with my behavior and overall academic performance, that was it. My mom was researching and learning as much as she could to find out exactly what I was dealing with. She was used to this, because I was also born with Turner Syndrome, which had been identified through karyotyping at birth. Upon her research, she learned that NVLD is extremely common among TS women and girls. Noting my difficulty reading body language and my impaired motor development, among other things that were impacting my daily life, the journey began.

A few years later, I would begin seeing a counselor. Sometimes it was private sessions, and other times it was a group session with other children who also struggled socially. It was with this therapist that I would get a formal diagnosis. I would also spend some time in occupational therapy, working on my fine motor skills, as well as continuing dance classes I’d started at age 5 to develop my gross motor skills. From 3rd to 5th grade, I thrived in school. My 5th grade teacher, Mrs. Rodriguez, was another educator who would push me to my best. She was also the teacher who sent my Young Authors project – a book about my experiences with TS and NVLD – to a competition. (That book would be published two years later through a publishing company with connections to the Turner Syndrome Society of the United States). Outside of all of this, my mom was also religiously studying my conditions and constantly working with me at home.

It was an endless effort. And unfortunately, I would have middle school teachers who didn’t have the time nor patience to learn about nor understand me. Then we moved out of state.

I went from living in a big city and having every resource I needed at my fingertips…to living in a town where the closest resources I had were two hours away. My new teachers were also not quite so adept at my condition. (My stepdad, several years before he and my mom got to know one another, was even my teacher in 7th and 8th grade – and a great one at that – but his intelligence and expertise in math often went over my head; he’s one of the smartest people I’ve ever met, and I love learning from him now.) At this point, I was also getting to the age where I was becoming more socially aware. I was a teenage girl dealing with other, mostly vicious and catty, teenage girls. The rest of middle school and high school were a nightmare socially for me.

Thankfully, they were not a nightmare academically. I graduated high school having been on the National Honor Society. I also went on to college, where I graduated cum laude. Those years were a whole different ballgame in and of themselves. Socially and mentally, they were dreadful. I was keeping A’s and B’s in the classes. I’d also studied theatre and communication, and I performed, which I believe helped me greatly develop my team-building and professional skills. I also believe it helped me become more emotionally aware and understand how emotions are reflected through the body. (Thank you, Dr. Miller, if you’re reading this.) But I battled depression and anxiety through those years. I was away from home, and I didn’t have a driver’s license at that point because my mother had concerns about teaching me; I struggled to form adult friendships; I was burnt out trying to keep up with school work. All by myself. When I graduated, I’d realized I didn’t have a talent for what I’d studied and originally set out to do – perform. Searching for work and making a plan for my future did not go well, and my first year post grad was, definitively, the worst.

Then, I found education.

I remember the day I applied to substitute teach, thinking how funny it was that I’d spent so long praying to just be done with school…and here I was going right back to it. I spent several months subbing in my local district, going from preschool all the way up through high school. Every day was a new adventure, and I loved it. And, surprisingly, being in a classroom was not so much torture when I wasn’t the student. It also gave me purpose. I constantly found myself noticing certain behaviors in students that were similar to mine as a child, and I developed a passion for being that advocate I had in school.

By the end of that school year, I decided that I would pursue an MAT. That was put off, however, when I’d met teachers and parents from a local Christian school who’d brought their choir students to perform at my church. I got to chatting with one of the parents, who was also a board member, and mentioned I was interested in becoming a teacher. He said they were looking for teachers, and within weeks I was sent an application to fill out. Long story short, I started teaching junior high and high school that following year, and I lived and taught at that school for two years.

At that point, things began to change for me. I’d reconnected with the man who would become my husband, who I’d met in college, and we got engaged. I left my position at the Christian school, intending to take a break from teaching to focus on marriage (because lasting, committed relationships are…kinda hard) and really solidifying my future career. But when my plans fell through, I applied for one job which led me to interviewing at my public school district’s high school. Where I was offered another teaching position. I spent only a year there because I didn’t have a certificate and I could only be emergency certified for a year. Due to a miscommunication, I found myself without a job just before the start of year two there.

But, as a Christian, I fully believe God had a better plan for me, because I ended up doing what I’m doing now.

You see, I learned in those three years of teaching that running and maintaining a classroom is a major struggle for me. I’m not a natural teacher in the functioning sense. However, I still adored working with the students and seeing them learn and grow. I felt like I was part of something and like I could help kids the same way that my favorite teachers had helped me. Like I could be their advocate. When I found out that I couldn’t continue in my teaching position, I applied for another. This one through a grant-funded program that places educators in local schools to work closely with a caseload of students who need just a push to get them to where they need to be. So, for the past four school years, I’ve been working with students in 3rd through 5th grades, helping them in reading and math, engaging their families, and collaborating with their teachers. (Teachers who I am heartened to say are among the best I’ve seen and who possess the same care, passion, and skill that Ms. Marlar and Mrs. Rodriguez showed me all those years ago.)

I don’t exaggerate when I say it’s the best job I’ve ever had. And when I see a smile on a student’s face because they finally understand something, or because I’ve complimented something I’ve noticed they have a talent for, I forget that I was the one in the exact same position as them and that I still face many challenges in my day-to-day. I let go of the social anxiety, the constant thoughts that I’m going to say or do the wrong thing, and I’m able to focus on helping these kids find the tools they need to make it. And while those moments might come between times when I feel paralyzed by sensory overload, burnout from decoding nonverbal cues, and the like, they keep me going. They make me want to work even harder, because these kids deserve a successful future. They deserve to grow up to form happy and healthy families and find fulfilling work as I have. And that’s what I live for now.

All because I had people in my life who stood by me when I needed help. All because I had advocates who said, “She deserves a chance.” All because I still have loved ones who continue to help me and take the time to learn how to communicate with me. (God bless my husband, because it takes a very special person to be as intentional, loving, and patient as he is with me.)

To make a long story short: if you have NVLD, you are not alone, and your future is just as bright. If you love someone with NVLD, please don’t underestimate how much your time, your patience, and your care can make all the difference. We’re all just trying to understand and be understood. There’s beauty in things that aren’t perfect, and there are wonderful things ahead. Even on the hard days.