My Journey to Self-Advocacy With My Communication Disorder

My earliest memory is of sitting on the basement staircase of our Maryland house churning my sister’s peanut grinder. It was the coolest toy and it made peanut butter! I was 2 and a half years old.

I wish that sweet and vivid memory was the first of a childhood filled with joy, but many of the memories that follow are of fear of getting lost, fear that I couldn’t say my name or where I lived, fear that I would be alone and unable to communicate and anger that no one understood me. I was born with a communication disorder and didn’t speak my first words until I was 4 years old. The doctors told my parents I had a neurological lag, but I never really understood what that meant. I don’t know what my diagnosis would be in today’s world of multiple labels, but I do know the impact these early struggles have had on my life, career and my way of parenting two children with special needs.

By the time I reached elementary school, I felt my differences. I was an outsider and my school performance was poor. It’s clear to me now I had both an expressive and receptive language disorder that impacted the way I processed and organized information. When my teachers spoke, I felt like they were speaking a different language. Nothing made sense and I basically moved along in school because of social promotion.

Special education in the 1970’s didn’t look anything like it does today, but I did receive speech therapy and worked with a special educator. As I entered my tweens, I remember asking my older sister if I could live with her when we grew up. I had found an evaluation from years earlier that said I wouldn’t catch up to my peers. It was devastating to read, and I started thinking I would never be independent. How would I successfully live on my own? How would I ever have a job like my parents?

Friendships for me were complicated. I had a few close friends in early childhood, but there always seemed to be an imbalance. My friends dominated our interactions, with me following along because I didn’t know how to do it differently. Middle school, a painful transition for many kids, was excruciating for me. Those preteen years were the most difficult to navigate. Small kids can be brutally honest about differences, but they are often accepting — tweens in my experience, not so much.

By the time I reached sixth grade, the differences between my peers and me seemed insurmountable. I became the object of humiliation and systematic bullying. The end result was that I was ostracized by other children. I turned to journal writing and reading.

Upon reflection, I think my immersion into journaling helped propel me forward academically. I learned to process and sequence language and to organize my thoughts and feelings. I felt socially isolated and vulnerable, but for the first time, I had a vehicle for my pain other than screaming or biting one of my siblings. Writing was my outlet and novels became my escape. These were the essential tools I would need to succeed in school, and I emerged middle school inspired and hopeful.

In high school, I was placed into remedial classes but soon realized true boredom. Instead of being lost in class as I was in elementary school, I felt detached from learning because the material wasn’t challenging. High school was a real turning point for me.

In my first act of self-advocacy, I asked my guidance counselor to transfer me into accelerated classes. Believing in giving me a chance, he supported my request. In the world of today’s special education, we call that “assuming competence,” meaning educators should give special needs children access to the general curriculum and coursework that some may see as a reach. My counselor assumed my competence and gave me access to a completely different track of learning. That one change altered the trajectory of my future education and the course of my life. I continued on an accelerated track and graduated with a New York State Regents diploma.

I wanted to write about overcoming my communication disorder in my college admissions essay, but my guidance counselor, never perceiving me as disabled, encouraged me to write about my strengths instead. One morning, I walked in on a group of girls crying in the school bathroom. They told me my beloved counselor and advocate had died suddenly. I was heartbroken. He was the first person outside of my family to believe I was smart and capable.

In that moment of grief, I realized my greatest strength was the journey I had travelled with my communication impairment. I wrote my college essay about finding my voice and how my learning differences were my gift. My acceptance letter to Kenyon College applauded my strength in overcoming my challenges and welcomed me to the class of 1990.

Now it’s my turn to pay it forward. I’m working on a media project with a phenomenal group of people to bring acceptance, support and a voice to those impacted by communication disorders.

To learn more about “Late Talkers, Silent Voices” visit their GoFundMe page.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.