What To Bring To The Disability Services Testing Center

At my university, the Office of Disability Services has its own testing center that students can use to take quizzes and tests assigned in the classroom, as well as midterms and final exams.  There are single rooms with CCTVs and long tables, small cubicle-style areas, as well as other small-group testing rooms.  This is an awesome service for students who need a modified testing area, and I am really grateful that I have access to such place to take my exams.

Over the course of the last four semesters, I have learned a lot about what to bring to the testing center, and what to leave back at my apartment.  I’ve gone from bringing an entire backpack worth of materials to just carrying a few items.  Here are five of the items that I always bring to the testing center with me, and five items I leave in my apartment.

What to Bring

Student ID and Government Issued ID

For all exams at my school, the student must bring their student ID so the instructor can verify their identity and student number.  For a couple of my classes, I have been required to bring a government-issued ID card in addition to my student ID.  Since I don’t have a driver’s license, I obtained an under-21 ID card from the DMV and use that.

Colored Pens/Scented Markers

I use colored pens instead of pencils when taking my exams, since gray pencil lead on white paper provides very poor contrast.  I like to bring several colors with me, typically blue, pink, orange, green, and other bright colors.  I also bring four different colored highlighters with me for marking multiple choice questions.

I started working with scented markers while studying for my math exams and found that I was able to see numbers more clearly than when I would work with the fine-tip pens.  Another thing I noticed is that my brain would recognize the scents from the markers and help me remember things I studied, which is actually a proven study tip.

Cardstock Paper

When working with pens and markers, it’s easy to have ink bleed through to the other side of paper- or worse, transfer to a surface.  I request that my test be printed on single-side paper, and use cardstock paper, sized 8.5″ x 11″, in order to do scratch work.  I attach all of the materials that I wrote on at the end of the exam.

Earplugs

While my testing center provides these for students to use, I like to bring my own pair of comfortable earplugs that help cancel out random noises outside.  The pair I use feels very similar to earbuds/headphones without wires.  Here is a link to them on Amazon.

Professor Contact Info

I bring a small index card to each exam with my professor’s name, email, office location, and phone number.  The index card also has my name, student ID number, class name, and class section.  This has come in handy many times when the test wasn’t in its correct location, or the proctor had to call the teacher for further instructions.

What Not To Bring

Cell phone

While cell phones can be stored in a locker at the testing center, I prefer to leave my phone in my apartment.  Since I live a two minute walk from the area, I don’t find it necessary to carry with me.  Why would I carry something just to lock it up?

Backpacks

Backpacks, purses, and other bags can be difficult to store at the center and locate after the exam is over.  I prefer to get out of the testing center as quickly as possible, so I don’t bring anything that I have to check in.

Pencil Pouches

One time, I organized everything nicely in a pencil pouch to bring to the testing center.  For security reasons, it all had to be dumped into a clear plastic bag once I got to my exam.  It’s okay to bring these to exams, but don’t expect that you will be allowed to keep it with you in the testing center.

Portable CCTVs

I have been advised not to bring my own portable CCTVs because of the potential that the devices can store screenshots of the exam.  The testing center provides their own assistive technology devices for students to use.  I have never had any issues using their devices.

Personal Computers

While it makes sense to take an exam on a familiar device, personal technology is not permitted in the testing center.  My recommendation is to write down all of the common settings used and show it to the testing coordinator, who can enable those settings on a testing computer if needed.

For more testing-related information, check out these posts below!

Testing Accommodations

Surviving Midterms/Finals

Accommodations For Print Materials

How To Create A Disability Services File

Accessibility Settings For Windows 10

 

 

 

 

How Do People With Low Vision…Graduate From High School?

As the school year comes to a close, many seniors are working on preparing for graduation and ensuring everything goes smoothly. My family widely joked that they were surprised I was graduating, because I had faced so many challenges in school because of my disability and chronic illness. My brother also thought I would somehow fall so spectacularly when getting my diploma, that I would become a viral video. Luckily, my graduation went smoothly, even though I had an awful migraine the entire time. Here are my tips on how to make sure that graduation isn’t memorable for bad reasons. For reference, my graduation ceremony took place indoors, at a college, and I did not use a blindness cane or other mobility aids.

Share concerns with teachers

I remember being extremely worried that I would trip and fall off the stage while walking to get my diploma, or that I would fall down the stairs shortly after receiving it. I shared these concerns with a trusted teacher who was going to be helping with graduation, and they were able to warn me about the location of potential obstacles on the stage, as well as appoint a human guide to help me down the stairs.

When entering, keep your eyes down

As we walked into the ceremony, I kept my eyes down and searching for obstacles, as well as avoiding the onslaught of flashing lights that was all around me. A member of my friend’s family remarked that it looked like I was crying, to which someone else said “she’s not crying because she’s graduating, it’s because this entire room is like a giant migraine trigger.”  This wasn’t noticeable on the graduation film.

Request no photography

Since I get migraines from flashing lights, I requested that the photographer, who was taking pictures of each student as they received their diploma, please skip taking photos of me. It really helped with making sure I didn’t fall off the stage either.  My teacher and principal helped enforce this and kept reminding the photographer prior to graduation about not taking pictures.

Have someone else move the tassel

At some graduations, the tassel on the cap is moved to the other side while the student is on the stage, while at others it is moved after all other students had received their diplomas. For those who are supposed to move their tassel on the stage and are unable to do so, ask someone, such as the principal, to move it for you. This is especially helpful for students who may have a broken arm, have their hands full with a blindness cane or guide dog, or that are very paranoid about knocking off their glasses.

When tossing the caps

At the end of graduation, everyone throws their caps in the air to celebrate being done with school, and done with the ceremony. I didn’t throw my cap in the air, and instead chose to duck and make sure I didn’t get hit in the face. Also, there was tons of camera flashes going off at that moment, so the idea of opening my eyes was not appealing at all.

I didn’t attend any of the extra graduation events that my school put on, such as the baccalaureate celebration, because I had only attended that school for two years and didn’t know a lot of my fellow students. Plus, there would be more flashing lights. I’m fortunate that no one could tell that I had low vision or that I was in chronic pain as I walked across the stage to receive my diploma. Most importantly, I’m glad that I didn’t end up as some viral video because I had tripped over thin air.

Five Myths About Print Disabilities

As the school year comes to an end, preparations for a new school year are beginning.  As students transition to new classes and possibly even new schools, they may find that there are people that don’t know what a print disability is, and these people may struggle to create accessible materials or order special items.  It’s important to start the school year off right, so here I have compiled a list of five myths about print disabilities, and how to ensure students receive accessible materials

Myth 1- There’s no need for large print in math/science

While there are some print disabilities like dyslexia that only affect letters, most print disabilities affect letters and numbers in all subjects, as the font is too small to read.  There may be added difficulty with graphs, exponents, subscripts, maps, and even music.  Always have large print materials available for all subjects- this extends to textbooks as well.

Myth 2- Writing in all caps is the same as large print

DOES THIS LOOK ANY LARGER TO YOU?  Nope, didn’t think so.  Writing in all caps in a small font size is not the same as having large text.  There’s no need to write in all caps in large text either. Unless the rest of the class is getting everything in all caps, there is no reason for the student with a print disability to get everything written that way.

Myth 3- If you sit there long enough, inaccessible materials will become accessible

One day, I received a practice test that was in small print.  I walked up to the teacher and asked for large print, and they told me to sit there and try harder to see it.  After staring at it for an hour, the font didn’t magically enlarge or become clear so I could see it.  It’s also a bad idea to argue that the student doesn’t need large print, especially if they have an IEP.

Myth 4- Students should feel bad requesting large print 

At a band audition, I had trouble seeing the music that was provided for me.  The teacher on duty (not my teacher) informed me that I could throw everyone behind for 45 minutes so they could enlarge my music, or I could suck it up and play the music I couldn’t see.  This teacher knew exactly how to make me feel guilty for something I couldn’t control, so I just tried to guess what the music was- and looking at my extremely low score, I’m pretty sure my guess was very off.  Looking back, I should have made them enlarge it, as I deserved the same opportunities as the other people auditioning.  I don’t get any extra advantage with my large print.

Myth 5- If a student can use a cell phone, they don’t need large print

I actually have an entire post dedicated to this topic called “My Phone Isn’t Paper.”  Paper displays and digital displays are two different things, and students have found ways to be able to use technology using the accessibility settings.  After all, you can easily zoom in on a digital screen…the same can’t be said for a paper screen.
You have the right to see materials just like every other student, and your school is required to provide accessible materials for you if you have an IEP or 504.  Don’t let anyone tell you otherwise.

State Standardized Tests/ SOL Accommodations For Low Vision

Every state has their own form of standardized tests. In my home state of Virginia, we have the Standards of Learning exams, most commonly referred to as SOLs. At least one of these tests is administered a year, from third grade to twelfth grade, and students sometimes take up to four of these exams. While they technically don’t count for a grade, students need to pass a certain number of SOLs in order to advance in school or graduate. For the majority of the student population, the tests are administered online with fill in the blank, choose multiple answers, and multiple choice questions, in addition to exams where the student writes an essay. There’s only one problem with these digital exams- they can’t be enlarged.

Before the digital exams came out, everyone took exams on pencil and paper, but I had a special exam that was in large print. In third grade, my first year of taking the SOLs, the school forgot to place an order for all four of my exams, so when test day came, I didn’t have a test, so the school decided I would go sit in a classroom with first graders while the rest of the class took exams. When the tests showed up a week later, I had to take all of the tests in one day, as opposed to having one day to complete each test. Luckily, the test proctor gave me candy inbetween tests as a way to apologize for what was going on. Ordering tests early is extremely important, as if you have a student who uses large print in the classroom, they need it in the testing environment too.

In middle school, the tests converted to a digital format, and I was beyond excited for this. I couldn’t wait to be able to enlarge text and graphs how I needed them, and be able to work with computers, since I love technology. As I expressed my excitement, someone turned to me and said “oh, you can’t enlarge this. The magnification feature is locked to prevent cheating.” While this was before I knew a lot about assistive technology and accessibility, I still thought that made absolutely no sense. How is being able to see something clearly considered cheating?

I think a lot of the stigma about receiving a large print test started once the digital tests started being used. The large print test was printed on ridiculously large paper, since it took up three desks in size. The text was enlarged to size 20 point font, and at the time I also had accommodations to use pens and highlighters, while other students had to use pencils. One interesting thing is that while the rest of the class could use a calculator, I was not permitted to use one because they did not have one that I could see. Another fun fact about the test is that the ten field/test questions on the traditional exam are eliminated, as are the fill in the blank, true/false, pick multiple, and other free response question formats. I had less questions than everyone else, and the questions were multiple choice. One year, I had a teacher complain to the principal that I finished before everyone else, to which my family and I had to explain that I had ten less questions than everyone else, so naturally I would finish quicker. I also didn’t have to transfer my answers to a Scantron document, so that saved time as well.

I always managed to pass my SOLs until I took geometry. My geometry teacher was awesome, and probably one of the best math teachers I had in school because they understood how to create accessible materials. Unfortunately, the people who created the SOLs did not know how to create accessible materials, as my mom and I found out that graphs and other images were only enlarged to 113% (as of 2017, they are now enlarged 166%, but since I receive materials enlarged to around 250%, this still wouldn’t be large enough). I wound up failing the SOL because I had so much difficulty with the graphs and shapes, but I was eligible to retake the exam the next semester.

As a student with an increasing interest in assistive technology, I suggested that the test be broadcast on a projector in a classroom so I could work out the problem on the white board and then record my answer in the test booklet. It was easier than magnifying the test, as my eyes hurt whenever I used a magnifying glass, and I was not provided any other assistive technology like a CCTV. Because I had sensitivity to flashing lights as well as lights in general, I had to take the exam in a classroom that was almost completely dark, with my case manager as a proctor (who later told me they were worried about falling asleep while I took my exam). I wound up failing the exam on the second try as well, but only by two questions. Since I passed my algebra 2 SOL (using the same projector accommodations, and still without a calculator), and I only needed to pass two math SOLs to graduate, we decided not to worry about geometry anymore.

When I moved to a different high school junior year, I got the opportunity to finally use a calculator on my SOLs. I was recommended the myScript calculator app, which would be enabled in guided access mode so I couldn’t use the Internet or any other apps. This was extremely helpful, and I managed to do very well on my chemistry SOL because of it. I remember being very excited about this calculator, to which my guidance counselor asked if I wanted to try my geometry SOL again, and I said that I’d really rather not.

I graduated with an advanced diploma from Virginia public schools in 2015, meaning I had passed at least two English exams, two math exams, two science exams, two history exams, and another exam in one of those subjects. Since I have graduated, the E-Bot Pro, my favorite CCTV, has been approved for use with the SOL. Students can also apply for accommodations to use portable CCTVs such as the SmartLux or other video magnifiers on the exam. As I like to say, everyone has the right to see the same things as everyone else, and that applies to testing as well. I hope my experiences with the SOL can help other students with low vision taking standardized tests, and that they may be able to do better than I did.

If you have any specific questions about my SOL accommodations, feel free to comment below, as comments go directly to my email. I will do my best to respond.



Colored Paper and the Readability of Text

On my seventeenth birthday, I presented at a science fair affiliated with my school district about my research on how the color of paper can affect the readability of the text on the paper.  This was the first time I really investigated how important contrast is when creating accessible documents, and I was able to determine the colors of paper I preferred for my assignments.  When I presented this research to the science fair judges, I received an unexpected surprise- three out of the five judges were colorblind!  Globally, one in twelve men and one in two hundred women are colorblind, and the odds of encountering two men and one women who are colorblind in a room seemed to be one in a million.  My friends and family found this experience absolutely hilarious, and told me that it would be a great story to tell if I ever presented my research again, though I wasn’t very amused.

My interest in this topic began in 2013, when I visited a neuro-opthalmologist at a large medical center who showed me an eye chart with different colored backgrounds.  They explained that people tend to see better on the eye chart with colored backgrounds because the colors helped reduce eye fatigue (from the white glare of the normal eye chart) and it was easier for the eyes to focus.  I was fascinated by this, and chose to do more research on it for my science fair project.  Over the years, I have learned even more about creating accessible materials and how important contrast is, and will be sharing some of the practical applications of my research below.

What colors work best

Light yellow and light blue were found to be the paper colors that were the easiest to read off of.  It could easily be read in all lighting conditions, and the effectiveness of the colors weren’t diminished if someone wore tinted glasses (like I do).  I have found it is easy to read on these colors for long periods of time, and all colors of my pens and markers show up sharp even on the colored paper.  Blue is best for large amounts of information or reading, while yellow works great for worksheets.

What colors work less well

Neon bright colors, while they do stand out, often contribute to eye fatigue and the eyes may have trouble focusing on the page.  Darker colors, such as those found on conventional construction paper, may also be difficult to read.  The darker backgrounds obscure text and make information difficult to process.

Using colored films

While this wasn’t part of my project, one of my teachers found that I processed information much better when they added a colored film on top of the paper that they were projecting, or when I layered a colored film on top of what I was reading.  Because of the way fluorescent lighting was set up in some classrooms, I found these films difficult to use when the lights above me would reflect on top of the plastic, so I very rarely used them while sitting at my desk.  Now that I am in college though, and most of my classrooms don’t use fluorescent lighting, I have found myself reaching for these films more often when I have to read papers for long periods of time.

Changing white intensity

Since sharp white can be bad for eye fatigue, I have blue light filters on all of my main electronic devices, including my desktop computer, laptop computer, Android phone, and iPad.  I also have a post dedicated to reducing eyestrain with technology.

If I put it on a colored background, does this mean I don’t need large print?

NO!!  If you have low vision, please continue to use your preferred font sizes and image sizes, even if you use a colored paper.  The page color is supposed to make text easier to see, not to add any other difficulties.

Bottom line, the page color can influence the readability of font, and by using light colors, the reader may find it easier to read for long periods of time and not have as much eye fatigue from glare.  Experiment with different papers and figure out which one works best.

ACT Accommodations For Low Vision

Even though I took the SAT, it was recommended that I also take the ACT (plus writing) test, as colleges liked to see that students took both exams.  While getting my SAT accommodations for my print disability was fairly easy, since I had taken an AP exam in the past, getting my ACT accommodations was extremely stressful.

I was denied my initial request for large print, however was approved for triple time, and received notification about this eleven days prior to the test.  Following that, my mom and I contacted the ACT organization, who requested more documentation for my disability, so we sent them my IEP and certification of low vision from my opthalmologist.  We also got the school testing coordinator involved in the process.  Nine days after I was initially denied accommodations, and two days before the exam, I was approved for everything I needed.

Like my SAT, I took the test in a small group setting in a different classroom than the rest of the students.  We went to the school I would be testing at the day before my exam to fill out forms as well, so when I got there, they could immediately start my exam.  Since I had triple time on each section on the test, the sooner I started the exam, the sooner the exam would be over.  I had triple time for all of my sections, and while I was approved to take the exam over the course of several days, I chose to take it all in one day.

I received a large-text test booklet with 18-point Arial font, and the testing coordinator transferred the responses from my booklet to the answer document.  I was allowed to mark in my test booklet, and use my colored pens and highlighters for the test.  I had two desks that I used to spread out materials, and the lights were replaced with lamps in the testing room to reduce the risk of flickering fluorescent lights.  I took a break between each section, but never left the classroom.

I was approved to use the myScript calculator app on my iPad with guided access enabled, so I couldn’t access the internet or any other apps.  I also was permitted to use a magnifier and a blank 3 x 5 index card for tracking text.  The index card was especially helpful when tracking math and science text.  I was not allowed to use a computer for any section except for the writing section- I used Microsoft Word and had spell check and the internet disabled.

I received my scores about six weeks after everyone else, as is typical for most large print exams.  One thing I liked is that I was able to see how I did in individual sections, and it was relatively easy to send scores to the colleges I applied to.  Overall, I would recommend taking both the ACT and SAT tests, and filing for accommodations several weeks in advance, and submitting every piece of documentation you could possibly think of.


 

My Phone Isn’t Paper

Back in high school, I had teachers who didn’t believe that my vision was as bad as I said it was. They believed that I was like the rest of my friends- texting, reading, and driving around. These teachers would often ask me, my friends, my parents, and even my case manager why I could be texting (or doing some other task) but not able to see what was on the board or on my non-enlarged classwork. And honestly, it was very frustrating to explain time and time again.

I have many accessibility settings enabled on my phone and also use third party apps in order for me to see my phone clearly. The font size on my phone is the same as the font size I receive for print materials, and I have a high contrast filter applied. As a result, I am able to text my friends easily and use my phone as much as anyone else.

I also use an eReader to read books,enlarging the font size to the largest one available. I have a print disability, meaning I cannot read small text, which is why I had an IEP in school with accommodations that included large print. Comparing my ability to read accessible materials and my ability to read inaccessible materials is unfair.

As I’ve gotten older, more and more teachers have asked me if I drive or have a learner’s permit. Since I could barely see the board even with visual correction, I was always confused when teachers were surprised that I don’t drive. One teacher went as far to ask my friend sitting next to me if I was able to drive, trying to see if they could trick my friend into telling what they believed was the truth. Of course, my friends often laughed at the idea of me behind the wheel, saying I would have six casualties before I even pulled out of the driveway.

The most frustrating comments of all were when I was asked why I couldn’t see perfectly, even with glasses. Just like crutches don’t make someone walk perfectly, glasses don’t make someone see perfectly, it only gives them the maximum correction. That may not mean perfect eyesight, and they might need some accommodations to ensure they are able to see things. Never doubt that someone could have low vision just because they are wearing glasses, and don’t compare their sight loss with correction to someone’s sight loss without correction. Also, if someone has an IEP, chances are they need the services they are provided, and it is a bad idea to argue that they don’t, especially when it comes to low vision. Assistive technology has come a long way, allowing people with disabilities to seamlessly integrate with their friends, and I will always be grateful for the technological advancements that have helped me succeed.

SAT Accommodations for Low Vision

I remember when I walked in to take my SAT.  The day before, my mom and I, along with the testing coordinator for the school I was taking the exam at, spent at least an hour filling out a variety of pretesting forms and filling out my information on what seemed like several dozen pieces of paper.  Keeping track of all those forms seemed to be more stressful than taking the exam.  When testing day came, the testing coordinator gathered all of the forms and signaled for my mom and I to come to the front of the line so I could be escorted to testing.  As my mom and I walked forward, a bunch of parents started yelling at us for cutting the line and seeming like we were more important than everyone else.  They started asking what was wrong with us as I was walking away with the testing coordinator.  To answer their question, there isn’t anything “wrong” with me, I was just a student who received accommodations for my vision impairment.

We filed for my accommodations at least twelve weeks in advance.  While I had taken an AP Exam in the past, the College Board had us resubmit my accommodations because we had to make some minor changes.  My accommodations were approved in a reasonable amount of time, and I didn’t have to worry about rescheduling.

I took my test in a small classroom where I was the only student, with at least two staff members present.  The overhead lights in the classroom were turned off and replaced with lamps to help with my light sensitivity.  I had a giant table to work on my test, and there were computers in the classroom for when it came time to type my essay.  I received short, frequent breaks to stretch my legs and walk around the classroom, since I was prone to leg spasms.

The test itself was in 22 point Arial font and came in a spiral-bound book on 8.5″ x 11″ paper.  The paper was thick so I didn’t have to worry about the colored Sharpie pens I used bleeding through and obstructing my view of answer choices.  Images were enlarged 250%, and math notation such as exponents were enlarged as well.

As for assistive technologies, I used my personal iPad with the app myScript calculator, a calculator that calculates equations that the student writes with their finger and that supports large print.  There were no graphing capabilities on this calculator.  Guided Access was enabled for the duration of the exam so that I could not access the internet or other apps during the test.  I also had access to Microsoft Word 2013 with the dictionary, encyclopedia, and internet functions disabled, for the essay portion of my exam.  The essay was printed after I finished typing.  If I could go back in time, I would have also used a CCTV device as an extra support during my exam for when I had trouble seeing smaller items.

I received time and a half on the exam, which was adequate for me.  I also did not fill out the bubble sheet for the exam, instead having a paraprofessional do it after I had completed testing and left the building.  It’s worth noting that I did not receive my scores at the same time as everyone else who tested on the same day as me- I believe I had to wait an additional 4-6 weeks, as is common with most standardized tests that are in an accessible format.

Below, I have outlined my official accommodations for the exam:

  • Large print, size 22 Arial point font
  • Graphics enlarged to 250%
  • Extended time- 150%
  • Use of pens on the exam
  • Word processing software
  • Extra/untimed breaks
  • Use of alternative calculator
  • Small group testing environment

Overall, taking my SAT exam went incredibly smoothly, and I was able to score very well and get into my top choice college, as well as my second choice.  I am grateful that it was a relatively stress-free experience in taking my exam…well, about as stress-free as taking a SAT can be.

Having an Undiagnosed Chronic Illness in High School

Back in high school, people often asked me why my vision was so bad, why I had frequent migraines, why I wore a leg brace several days a week, and how I simultaneously looked completely normal.  It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself.  Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.

Isn’t there medicine/glasses that can fix this?

WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again.  Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have.  I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about.  Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is.  Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.

You’re faking for attention

Ah yes, I must be faking my condition.  I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage.  I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird.  I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick.  And most of all, I love  not being able to do my classwork because I can’t see it, and having the teacher give me a zero!  All sarcasm here, but people say that a condition is fake when it is something they don’t understand.  What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.

I wish I had your condition, haha!

I wish I didn’t have this, but hey, things happen.  There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights.  Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal.  I just laugh off the comment and drop the subject.

What do you even have?

If you can answer this question, then you would be a totally awesome person.  My condition baffled doctors for many years.  When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions.  About a year later, he looked at us and said “time to find that zebra!”  I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn.  Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had.  Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with.  I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition.

If I were you, I would be in bed

Well, I would love to be, here I am at school regardless.  Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done.  I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me.  While pain definitely is relative, I have learned to function through it and be able to continue living.

Why can’t you do this anymore?

As my vision has gotten worse, my need for accessible materials has grown exponentially.  I’ve also found it more difficult to participate in activities like dance.  It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done.  I got more into writing and playing instruments after I got sick, and took up several other interests as well.  This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done.

Have you tried essential oils?

I have had several people tell me that my symptoms can be cured by essential oils.  I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms.  I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.

Aren’t you a little young to be dealing with these medical issues?

Yes, yes I am.  Another favorite response to this question is “apparently not!”  Chronic illness can strike at any age, it does not discriminate.  While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that.  Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends.

Why can’t you do this, but you can do that?

The environment I am in greatly influences whether I am able to perform a certain task or not.  If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them.  Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in.  Just because I can do something one day doesn’t mean I can repeat the same task the next day.

It would suck to be you

Actually, no.  Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise.  I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning.  As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition.  It’s important to be grateful for the opportunities I have.  My illness will always be something I have, and never who I am.


 

All About AIM-VA

When I was in high school, I was unable to read the textbooks that my teachers used in class. Since my middle school didn’t use textbooks, I was surprised to find out that I had to work with them so much. Because the books were older, I was unable to find copies of them to purchase digitally. Thankfully, I was able to use AIM-VA to receive accessible digital copies of my textbooks.

Accessible Instructional Materials Virginia, also known as AIM-VA, is an organization affiliated with the Department of Education that provides accessible materials, not just textbooks, to students with IEPs and print disabilities across the state of Virginia. Each state has their own version of this program. Through their service, I was able to receive math, science, Spanish, and English textbooks. The math and science textbooks were the most important because each letter, number, and symbol is important, as opposed to English where the brain can miss a letter while reading and still understand what word is on the page. I benefitted tremendously from these textbooks, and have written some tips on how to help other students benefit from receiving services from AIM-VA as well.

Order early

Textbooks can be ordered for the next school year starting in late March. Once your schedule is finalized, I recommend placing the order. Some textbooks can be downloaded instantly, others may require processing time. Do not wait until a month into the school year to order textbooks- after all, shouldn’t all students get their textbooks at the same time, not just the sighted ones?

Order ALL the books

Math and science are just as important as English and history. If someone can’t see small letters, they can’t see small numbers either. Also remember that some classes may use multiple textbooks, and it helps to have all materials available. These materials come at no cost to the school, so why not order everything the student will need?

Think beyond textbooks

Do you use workbooks? How about music books? AIM-VA can make all of these materials accessible, even materials used in the classroom such as worksheets and pamphlets that the school might not know how to make accessible- for example, I once had a map enlarged so large, I had to stretch the paper out in the hallway so I could work on the assignment.

Choose a software

Good old Adobe reader works great for reading textbooks, but not all students may be able to take a laptop to school. Back up files to storage solutions such as Google Drive (and ensure they are deleted after the student is done using them for the year). That way, the materials are available on any device, and can also be input into programs like Notability, which allows students to easily read and annotate documents.

My experience

The textbooks and workbooks I receive from AIM-VA were very high quality, and I was able to easily follow along in class using my laptop. Since my first high school did not have wifi available for students, I especially appreciated that the files were available to be downloaded offline so I didn’t have to worry about losing access to the files. AIM-VA is a great resource, and ensures that students with print disabilities have the right to read in an accessible format alongside their peers.