How Embracing Disability Transformed My Life: A Journey of Growth and Empowerment

My life, like many others, has been marked by a series of diagnoses and the learning experiences that come with them. In elementary school, I was diagnosed with a specific learning disability and anxiety, which resulted in the need for an Individualized Education Program (IEP). As I grew older, I learned that my learning disability was actually Dyscalculia. In middle school, I moved to a 504 plan and, as a side note, was also diagnosed with asthma and Raynaud's disease.

Over the years, I became more self-aware and took an active role in my educational journey. By high school, I was an integral part of my education team. During that time, I was also diagnosed with Generalized Anxiety Disorder and Obsessive-Compulsive Disorder. In college, I received a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). While managing my anxiety as an adult, I came to realize that I have ADHD, and I am currently in the process of obtaining an official diagnosis for it as well.

"You're So Quiet, You Must Be Smart"

I vividly remember kids asking for help with homework or wanting to use my work for assignments because they associated quietness with intelligence. They thought my silence meant I was focused and smart, but in reality, I was quiet because I was constantly anxious. I often considered myself an average to below-average student, partly due to a learning disability and partly because of overwhelming anxiety.

From a very young age, I often felt a knot in my stomach, my heart would race, and the room would spin around me. I was terrified of being called on in class, afraid I would look stupid for not knowing the answer or for mispronouncing a word. This anxiety made it difficult for me to focus and truly absorb what I was learning because my mind was constantly racing with at least five different thoughts at any given moment. I found myself trying to anticipate what would happen next throughout the day, just so I could know what to expect.

I frequently found myself heading to the nurse's office right before it was my turn to speak, read, or when we were choosing teams for a game or project. The nurse would call my mom, and she would bring me Tums. I would then return to class, knowing that I had missed most, if not all, of the lesson.

Looking back, I wish someone had taken the time to notice my pattern instead of sweeping it under the rug and moving me along. I wish someone had made an effort to understand me and help me understand myself. Maybe then I could have worked through my anxiety and made progress much sooner.

Something missing in my elementary education and middle school years was a push for me to understand who I was and how my mind worked. I was placed on an IEP, pulled out for occupational therapy because I couldn't figure out which direction to go in gym class (something I would later understand is a facet of Dyscalculia), and given extended time or a quiet setting—things that set me apart from the majority of my peers.

Some of my classmates felt that it was unfair and wondered why they couldn't have the same treatment. I wish there had been more education around disabilities and an understanding that every person's brain works differently and needs different supports. I knew I needed help and that everything in school did not come easily to me. I wanted that help. I wish one of the supports in place had included helping me understand myself, my needs, and how to advocate for myself without making excuses.

The culture of my earlier educational years discouraged open discussions about these challenges. We were taught not to make others feel different or acknowledge the reasons for our individual support needs—only watered-down explanations like, "You just need some extra help sometimes."

Navigating a Traumatic and Confusing Time in My Academic Life

My mom and I frequently discuss my education now that I'm an adult and understand the special education system. She wishes she had known more about how to advocate for me. My mom firmly believed in the school system that she and my dad researched for my brothers and me to attend. She trusted that they had our best interests at heart, and for the most part, I believe they did.

What frustrates me is the lack of education for parents, guardians, and caregivers about the services and supports available to them, as well as how to access and utilize them. So much of this system feels like a game, with an unspoken rule of, "If a family doesn't ask for it, don't offer it." My least favorite "rule," which caused me irreversible trauma, was, "Your child has to fail to prove they need supports."

I was in 5th grade during my tri-annual evaluation to demonstrate that I still qualified for services. The good news was that I tested so high I no longer qualified. My mom was informed that I was doing well because of the supports in place but that I still needed some help. However, they needed data to prove my need for these supports. To obtain this data, they decided to stop all support, and I needed to fail. And, by the way, they weren't going to tell me about this plan to ensure they got the most accurate results.

So I went to school, and everything changed. I no longer received extended time or was pulled out to a quiet area. I didn’t get help with reading comprehension or math anymore. I gave them the data they wanted. I failed—miserably.

We were in pods in 4th and 5th grade, with four classrooms in one large area. I actually loved how the teachers worked together; the units were similar and complemented each other. Everything connected and made so much more sense to me, which made the sting of failure that much more drastic. I thought I was finally understanding the material. I thought things were finally clicking.

We had desks with a side compartment for our belongings. At the end of the quarter, we received our report cards, which were placed face down on our desks. I eagerly ran over, flipped mine over, and saw a line of Fs and Ds. I shut down. I felt clammy, my heart raced, and I thought I was going to throw up. I buried my head in my desk and started to sob.

My teacher came over and walked me to the office. I barely remember the conversation I had with the administration about how I had performed well with supports, and they would reinstate some of them, though it would look different. They explained that I would be transitioning from an IEP to a 504 Plan. My mom had no idea how she could have approached the situation differently. She wishes it could have unfolded in another way. I do too. At 36, this remains one of my most prominent memories.

When families approach me with similar situations regarding their children, I recommend that if the school believes a student no longer requires the same level of support—which is, by the way, a very positive development—they should build in a period before the expiration of the IEP to gather data in a way that won't harm the student. There are effective ways to communicate with students about what is happening and how the team plans to adjust different levels of support to determine what works best moving forward. The following year can then be spent gradually reducing supports to see how the student performs without completely removing all assistance. This approach also allows time to teach the student the necessary skills to succeed independently, without relying on services.

Understanding and Advocating for Myself

During high school, I had several teachers who challenged our thinking and encouraged us to embrace our individuality. It was during this time that I discovered my passion for participating in various activities and clubs. I was actively involved in organizations, including our high school chapter of the Council for Exceptional Children (CEC) and the school newspaper. Outside of school, I enjoyed taking dance classes and babysitting. Whenever I had spare time during the school day, I preferred to spend it in the moderate to intense disability classroom. The teachers in that classroom were also the faculty members in charge of CEC, where I held various board positions. I discovered my love for special education early on, and that passion has remained with me ever since.

In high school, I began to understand the special education system more deeply and became actively involved in my own educational plan, my goals, and my meetings. I was in the early stages of understanding my diagnoses and quirks, as well as the services and supports that helped me succeed.

I found my stride in college. I started out as a Deaf Education major, but I realized I was missing Special Education. I discovered that I could merge my love of American Sign Language with my passion for Special Education. I knew that to succeed in college, I would need support, at least to get started and make it through the basic required courses. I reached out to Student Accessibility Services right away after being accepted. I completed everything they needed and was granted accommodations such as extended time, testing alone, and audio recording of lectures.

I quickly realized that some of my professors were excellent in understanding and working with me and my disability. Others, however, taught me how to respectfully and assertively advocate for myself. One professor was particularly passionate about teaching and their curriculum. Every book we used was at least partially written by them, and there weren't any supplemental notes, making it a class you could never skip. I knew I would need to use my accommodations to succeed.

The only issue this professor had was with recording the lectures. I explained that I couldn’t successfully take notes and follow along 100% of the time. I learned better if I could participate in the discussion while jotting down some notes and then listen to the lecture later to take more detailed notes. Initially, the professor was not agreeable to this. I provided my accommodation letters again and suggested we have a signed agreement stating I would delete all of the recordings at the end of the semester. Eventually, they agreed to that. I understood their concerns; I might have felt the same way. After all, why would anyone come to class if they could get the recorded lectures instead? I learned to respect the professor's intellectual property while also ensuring my needs were met.

Self-advocacy is a skill I wish I had learned in school before attending college. Now, I teach this skill daily and encourage others to incorporate it into both special education and general education. It is an essential skill needed in educational, professional, and social settings.

The Freedom of Being Me

We never stop learning about ourselves. With each new experience, we develop and gain more understanding. Like many people, I felt constant pressure growing up to be who I thought I should be. It wasn't until I had children that I truly began to embrace my authentic self. I have two daughters, and I see so much of myself in them. I want them to feel free to be who they are.

There isn't a specific person, group, or entity to blame for my struggle to feel comfortable in my own skin. However, my daughters are the greatest motivation for my change. I envision a better future for them: a future that is safer, freer, and more inclusive. I feel a strong need to contribute to positive change in our society.

Fortunately, this mindset is increasingly common among my mom friends. We share similar stories and are committed to reshaping the world for our children. While we know there will be challenges ahead, we aim to equip our kids with knowledge, acceptance, understanding, and compassion. The world can be harsh, but I hold onto hope that together we can support one another and create a better environment for all.

The most important lesson I have learned is to understand, accept, and embrace myself. Once I did this, everything started to fall into place. By being open and transparent, I have formed incredible bonds and strong friendships. I admit that I sometimes overshare, but my intention is to make others feel comfortable being open with me too. Here, there is no judgment—only grace, hope, and support for whatever they choose to share. I’ve discovered that the more we share, the more open we become to new ideas and help from others. This openness allows us to broaden our horizons and create an amazing community.

I would love to learn more about you and your experiences so we can build more inclusive communities. Feel free to leave a comment, email me, join one of my groups below, or schedule an initial consultation.

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