My Future Could Have Been Affected, Too

Writer’s Note

There have been initiatives to rename special education programs. I use this terminology because it’s the phrase with which I’m most familiar due to it being used during my time in school.

Individualized education plans (IEP) and 504 plans vary by state and district. Transitional 1st (T-1) programs are intended for students who have completed kindergarten but are still socially or educationally unprepared to begin first grade with their peers. It’s a year-long program and is often suggested for students with additional support needs.

My Education Journey

In preschool, my teacher told my parents that I was struggling with academics and with fine motor skills. The remedy for improving the latter, at least, was to place me in occupational therapy. I remember learning how to button a jacket and crab-walking. I was rewarded with lollipops. In kindergarten, I began receiving additional support for academics through a special education teacher. We met one-on-one, multiple times per week.

Transitional First Grade

I remember being sent home with lined sheets of paper with dotted letters name writing practice for home. My mother stated that I only learned how to write my name at five years old because she promised me a Strawberry Shortcake doll if I did so.

Towards the end of kindergarten, my teacher thought I still required extra help with my handwriting, despite my progress in other skills. She suggested to my mom that I start first grade a year later, participating in a T-1 program. T-1 would allow me to remain in one class all day and work with a teacher on an individualized scale. It was eventually decided that I would begin T-1 instead of moving directly into first grade.

Professional photo of a five-year-old girl, smiling in a fairy Halloween costume.
Image courtesy of the writer.

I was upset when I realized that I wouldn’t be moving up to kindergarten with my classmates. The worst part: no longer being in the same class as my best friend. Due to having a February birthday, her birthday being six months earlier, and starting first grade a year later, I was suddenly two grade levels behind her. My younger self wasn’t so happy; my older self knows that the decision wasn’t easy for my mother, and she just wanted what was best for me academically.

After a full academic year in T-1, I finally moved into first grade with an IEP.

IEPs and standardized testing

My IEP included a non-specific math learning disability; an auditory processing disorder would also be noticed once I got older.

Math doesn’t make sense to me, especially when I try to calculate things mentally. Imagine trying to solve a 500-piece puzzle while missing 100 pieces. I’m not unable to solve equations mentally; I just need support like a calculator or a piece of paper to better visualize it. Multiplication and division is a lot more straightforward because of the kinesthetic way it was taught to me.

The math-related learning disability determined the bulk of my IEP; I’d be pulled out of class a few times a week to work on math with a teacher one-on-one. Additional accommodations included clarification on assignments and instructions, preferential seating, extended time on tests and assignments, use of a highlighter on paper copies of schoolwork, and more. Having a paraprofessional in a math class was my norm. By third grade, I began to take standardized tests (SOLs), which I found difficult. Passing SOLs, however, was mandatory for advancement.

Starting in middle school, special education was rechristened resource classes. Same thing, different title. And no matter how much time I spent studying and prepping on my own and with my teachers, I still struggled.

In 9th or 10th grade, I failed my first three attempts on the SOLs. Due to my disability and trying my best every time, an exception was made. I was close to the desired score, so my teachers chose to consider my final score as passing. Without that exception and advocacy, I might not have graduated high school.

Then, COVID happened

The pandemic shut down in-person schooling during my junior year. The future of standardized testing and specialized learning was unknown.

A hybrid learning system was put in place for senior year. School administration considered resource classes too complex to navigate in this environment. Instead, we had “learning coaches” who ensured that we did our classwork on remote days. That was the extent of support. Without access to the resources I needed, I knew my results on the SAT, which I was due to take that year, would be poor.

Miraculously, a COVID consideration was available. Some school districts, including mine, decided that SATs were optional. Many colleges chose to make reporting scores optional as well. Keeping this in mind, I chose not to take the test. It was through this series of events that I managed to receive several acceptance letters from different universities.

The future is uncertain

I know I’m one of the lucky ones. Recent headlines have discussed layoffs and budget cuts to educational programs, including the Individuals with Disabilities Act. Millions of children in schools today rely on these educational programs, like I did. Cutting resource programs like these removes access to opportunities for students, changing the course of their lives. Without those very resources, I don’t think I would be where I am today.

I can’t imagine how children who have to worry about their accommodations and plans being taken away from them feel. There are legal protections surrounding resource classes for students with learning disabilities, but how can we know that the protections will always be guaranteed? For now, the action of removing accessible education has been temporarily reversed. Its long-term future is uncertain, and I worry about what might happen over the next few years.

My only hope is that future students have access to the resources they need to succeed — just like I did.

Image of a person in a cap and gown facing away from the camera.
Image courtesy of MD Duran on Unsplash.

Further Reading

If interested in reading further about resources for students with additional support needs, here are some resources below:

A Guide to the Individualized Education Program

Center for Parent Information & Resources: Paraprofessionals

Am I Posturing?

Here’s an idea

Over the past year, people have asked me many questions about my health, then proposed how I should approach seeking medical answers. At this point, the suggestions and perspectives overlap, muddling all of the feedback into one processing & storage facility within my brain. I know people have good intentions, but. 

So it becomes complicated when there are so many factors that affect my ability to receive the correct diagnosis.

My health journey began in early summer of 2024, when bloodwork that was done during my voluntary psychiatric hospital stay indicated that part of my lab work was not within the “normal” range. I began experiencing widespread pain, dizziness, fatigue, and other symptoms after my lab results were examined. Since last summer, I have been limited in my mobility due to my symptoms, as I become extremely dizzy when my posture changes from sitting to standing. I know that my widespread pain and fatigue is because of my fibromyalgia, but I continue on my journey to receive the information that will allow me to further adapt in my daily life. 

Posture and diagnosis

After rounds of regular bloodwork, head imaging,  EKGs — plus two heart monitors — I do not have an official diagnosis for POTS (Postural Orthostatic Tachycardia Syndrome), yet it fits as “a group of disorders that feature orthostatic intolerance. Orthostatic intolerance is the term used to describe symptoms that occur when a person stands up and can be relieved by lying down.” I fit the criteria of having this condition, due to the fact that I become dizzy when standing, as well as my heart rate fluctuating before and after standing. Thus, my posture is part of the diagnostic criteria itself. Possibly. 

About two months ago, I decided to go on a walk around my neighborhood, ignoring my body’s intuition that I overexerted myself. As a result, I endured presyncope/syncope and collapsed in the grass a few streets over. Since then, I do not attempt to regularly overexert myself. When I reach the breaking point, I listen to my body. It isn’t safe to collapse in grass, especially when your heart rate reaches the 150-160  beats per minute range. I suspect that I have POTS, but it has not been officially confirmed by a healthcare provider. It’s often hard for me to tell if the symptoms I consistently undergo are from my fibromyalgia (pervasive pain) or from what aligns with POTS (standing symptoms). I am unsure of which specific condition it is, as it seems to be one of three conditions on the POTS spectrum.

Although I am 23 and still figuring out how to adapt, I have many interests and ambitions that fill up the time I have lost. Even with lost time I could have spent at college parties or social events, I feel proud of who I am, and who I am becoming. I have gained a deep fondness for accessibility initiatives and disability rights. Activism and advocacy has become a love of mine, and it’s something I often research, to inform myself on a deeper level.

Accepting and adapting

Being a disabled woman is part of my identity, something I have learned to take pride in. The disability community is my community — my connection to others who can relate to my experience. My health journey has changed my outlook on the world, as I continually consider elements of my everyday life that I previously did not think of. For example, in social gatherings, I bring snacks, water, a portable fan, and a foldable camping chair, just so I can comfortably participate. 

When traveling, I research the cities and their accessibility features. Will certain routes require more walking? Do certain hotels and buildings not have elevators? Do I need to bring my shower chair to the hotel? Are there seating areas inside and outside of popular destinations? Am I allowed to bring my own water bottle into museums? Depending on my energy level, I sometimes have to skip or delay traveling to further destinations within a city. 

Overcoming hurdles

I attempt to adapt as best as I am able to, but it can be very difficult at times when I am unsure of which accommodations & support needs to utilize.  In August of 2024, I purchased my first cane in order to independently support my balance when walking. Navigating a college campus was already challenging before I became more physically disabled, but it developed into something that was 10 times as difficult. 

The college I recently graduated from is known for its historic features. Translation: it was not the most accessible. 

For instance, traveling to academic buildings was extremely frustrating, as I would often have to cut through other buildings with fewer stairs to reach class. Moreover, I had to speak to several of my professors about having classes relocated to a different building, so it was easier for me to attend my courses. Going from my dorm that had an elevator to the cafeteria took me an extra six minutes with my route of shortcuts. Accommodating myself for one year on campus was not simple, yet I persevered and graduated.

Reality that is life

However, in less than six months, the grace period for repaying my undergraduate student loans will end, meaning I will start paying back my loans. I do not know if continuing to keep searching for verifiable results is a viable option for me in the near future, even though I view it as necessary.

To most, it’s just some writing on a piece of paper. Just something on my patient portal. Just words. People often ask me why I keep trying to figure out what is going on with my health, why I am getting myself into debt over it. I see it as something that is vital for myself. Wouldn’t I wish I didn’t have to owe a lot of money to doctors and hospitals just to figure it out. 

Taxed if you do, taxed if you don’t

That’s the reality of being chronically ill. It’s either I get myself into medical debt or go without knowing for the rest of my life. That’s the disability tax: the extra money that I put into healthcare and mobility equipment so I can thrive in this world. 

For myself, seeking a diagnosis is not about a label or just something that exists in my medical chart. A diagnosis will create the specific accommodations that will help me succeed. I need it. Accommodations are tailored, personal, and often based on your medical history. Without it, I will continue to have difficulty finding jobs I am able to perform as a result of the physical limitations my health has on my body. I aim to continue searching for a job where I do not have to stand for long periods of time or lift a lot of weight. Impossibly. 

I know I will eventually reach this goal, because I know I have a support system and will have better access to resources when I am no longer in central Virginia. 

I may be unsure of how my life will look in terms of my health, yet I approach this challenge through the lens of destigmatization and inclusion. I can accommodate myself to the best of my ability, while using my voice to speak up for those who cannot do so themselves. 

Small European robin with orange face and breast, calling out with open beak.
(Image courtesy of hotblack via Morguefile)

When life feels tough, I remember a quote that has helped me through hard times, “Embrace the void, and have the courage to exist” — Daniel Howell.  

To readers who can or will be able relate to my experience at some point — you are more than valid. You are seen, you are enough, and you belong. You will eventually have the medical results that you have sought after for so long. 

You are not alone in your journey. When you are ready, there will be others in the disabled community who will welcome you.

Well, That Was Awkward

I broke down in tears at the pharmacy this morning.

I cost too much to live. 

I was only $20 off. My car payment of $150 went through the night before. I thought I was in the clear. I had not calculated, however, that I would need to hold an extra $20 in my account to cover my prescriptions.

My medication costs a lot in terms of other people’s money — and my time — just to secure them. I then go to the extra effort of taking them, so as to not waste other people’s money; it would be one thing if I were footing the bill for these meds and didn’t take them, but when someone else is paying for them? Unacceptable.

Second, I take them so as not to spiral into the chaos that is my unmedicated medical condition (insanity) — thus not wasting my time by visiting a mental institution (again). It would also cost more money for that additional visit. And it is already expensive to live: rent, utilities, cell phone bill, gas for the car, rent of the car…. And that’s if you’re normal… but, “no one is normal,” right?

“It is ok to not be ok.” Right?

If you say so.

Life is certainly expensive either way. In addition to the federal government backing the mission that is “Justin’s Life,” my parents give me money to make up for the difference between being a have and a have-not. They provide me with $1,400 or so a month, on top of the $1,500 or so a month I earn by being disabled (what a moral conundrum in and of itself, I must add). With that money, I earn the right to live at the poverty line.

The emotional price

I can provide you with a balanced account from this morning alone. The costs were high — high enough for me to cry as the pharmacists dispensed my medications and politely removed items I could not afford to buy if I wanted to afford my medications. Mouthwash. It upsets me to think that my breath smells, but it makes me feel worse to wake up in a mental institution. So, there is the first emotional cost decision — be unhygienic so it keeps you out of a mental institution or worse. So I cried.

As a 40-year-old, 6’3” white male in Manhattan, Kansas, I am sure I created an awkward situation for the attending pharmacists. They are just trying to do their job in the midst of my existential crisis. I would love to thrive or at least have clean breath, but I have to focus on surviving.

If it costs a lot of money to be disabled, I apologize to the economy. 

But I never met an economy that rewarded me for having emotions so powerful they have to be sedated and subdued with prescription medications. So, how much is my emotional labor worth at this moment? I am breaking down, apologizing for not having enough money to pay for what I need, and these two pharmacists are not paid enough to deal with my shit. So, did I make an emotional deposit with the pharmacists or a withdrawal? 

A lonely corridor with high steel bars and a murky gray sky in the background.
(Image courtesy of Indigite Cruel on Unsplash)

The moral price

That is where the moral costs come into play. Were we in Sparta, my baby body would have disintegrated long ago because I was born dead, and thus I would have no value to add. But I was born in America, baby! No concern for the umbilical cord strangling my oxygen supply; they just forced an oxygen tube down my throat and up my butt to bring me to life, according to some. According to those still living, I was born happy and healthy. Either way, according to the federal government, I am permanently disabled. But I was born in America, baby, so I have the rights of Life, Liberty, and the Pursuit of Happiness. 

Healthcare, however, does not fall under the auspices of those rights. 

I gotta fight for those rights every second. A moral dilemma: be an economic burden on the economy by existing or take your chances without the support structure that allows you to survive. A further moral dilemma is believing you are meant to thrive while knowing it takes much more than your emotional budget just to survive.

The intellectual price

My IQ is high as fuck. Too high, really. According to a former psychiatrist, I connect too many dots… that is a nice way of saying I am paranoid, delusional, and insane. But then again, everything is connected, right? From my left nut to my right brain to the end of the cosmos, everything is connected by the reality of energy alone. That is a good-enough stretch for my intellect to admit, in my opinion, that this morning I cried by design. 

What if I spent the money my family gives me to survive on a business that could make me independently wealthy? Then all my problems would be solved. But as a real one once said, “Mo money, mo problems.” That is the smartest thing I have ever heard, and I say that as someone who has seen what happens when people get the wealth they worked toward. I have enough problems as it is.

And so the economy did what it was designed to do — take labor from me in return for goods and services. The labor, however, was in the form of financial, emotional, moral, and intellectual production; my family came through for me financially, as they always do. I merely had to invest the emotional, moral, and intellectual labor. To survive.

What am I capable of when I begin to thrive? 

A single pink tulip and orange and purple pansies thriving next to a brick wall.
(Image courtesy of taliesin on Morguefile)