Life with Chronic Migraines


The year is 2011, but I’m in too much pain to remember that at the moment. I’ve forgotten a lot of things- my own name, the name of my cat, what town I lived in, and who the president is. All I can sense is levels of pain that I have never felt in my life before, and I wish they would stop. My parents thought I was having a stroke, the local hospital thought it was a drug overdose. It wouldn’t be until three days later at the children’s hospital that I would get pain relief and the diagnosis of chronic migraines, something no one else in my family had.

Chronic migraines are defined as “more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use (International Headache Society).” Migraines commonly run in families, and can coexist with other neurological conditions as well. Another name for chronic migraines can be chronic daily headache. Since 2011, I have had more than 15 headache days a month, sometimes reaching up to 30 headache days, where I have a debilitating migraine every day, a symptom connected to my diagnosis of Chiari Malformation.

For me, my migraines are drug resistant, though my neurologists over the years have had me try several different medications with awful side effects. Topamax made me never hungry, Verapamil made me dizzy, Amytryptiline and Imitrex gave me allergic reactions, and Neurotin gave me worse side effects than I ever could have imagined. I was missing school to go sit in the nurse’s office or missing band performances because the flash photography was similar in frequency to a strobe light, my biggest trigger. I had to navigate freshman year of high school while on large amounts of migraine drugs with weird side effects, yet still having chronic pain. I wish that experience on no one.

I started to manage my symptoms with massage therapy and acupuncture, and found that helped a lot with managing my migraines. It didn’t lessen their frequency, but because there was less pain in my neck and shoulders, the pain seemed more tolerable. I also start finding simple remedies that help me manage my symptoms, like peppermint essential oil to combat nausea or doing yoga to release muscle tension. Using alternative medicine has helped me a lot, though I understand that it isn’t meant to cure my migraines.

My senior year of high school, I was in almost all virtual classes for several reasons, one of which was my chronic migraines. I would sleep through my first period class, come to school for second and third period, and often leave during fourth period. Alternatively, I would stay through fourth period and then go home and crash in bed. Sleep was really the only way I could manage my migraines, which could be triggered by flashing lights, loud noises, the weather, or seemingly nothing at all. Food triggers were ruled out as the cause of my migraines, as well as vitamin deficiencies and similar conditions. My migraines were confirmed to be caused by Chiari Malformation in October 2015.

Fortunately, I have been able to attend college several hours from home and continue to manage my migraine condition. I have a private bedroom, meaning I do not have a roommate, but do have 1-3 suitemates who I share a bathroom and living area with. My disability housing accommodations state that I should have a lower-level private room with air conditioning, and the ability to make my room completely dark, as I am sensitive to light and sound when I have migraines. I also have a file with Office of Disability Services that says I have migraines. I schedule my college classes at times where I usually don’t get migraines and often come home from class and sleep (read more about my bed here). I have also gone to class with migraines before, as I know the migraine won’t improve whether I’m sitting in my room or sitting in the classroom.

Often times, people can’t believe that I am able to function through my migraines so well, and ask how I am able to live through this pain. The truth is, I have two options- let everything consume me and just sit in my room all day, or get used to the pain and live my life. While that first option may be beneficial for some people (and I understand pain is relative), I have chosen the second option of developing a superhuman pain tolerance and just living life. I do not like talking much about my condition in real life, because I do not want sympathy or attention from others, especially people I barely know, as I can manage my pain just fine. My close friends and family know the depth of my condition, and that’s more than enough.

I can’t say that life with chronic migraines is the best thing ever, but I can say it has made me a more understanding person. Whenever someone around me experiences migraines, I can relate on a deep level to the pain, sensitivity to the world, and feeling like hair weighs 100 pounds. I understand there are people who have it worse than me, but my hope is that my experiences with chronic migraines can help someone else understand their condition more.

My College Bed

My College Bed

When I was shopping in preparation for freshman move-in, one of the main things I focused on was my bed.  I have Chiari Malformation, which causes severe back and neck pain, as well as chronic migraines that can only be treated with sleep, so I spend more time resting in bed than the average college student.  Because of this, it was extremely important that my bed be as comfortable as possible, and be a place where I could easily recharge, as well as manage my pain.  Here is everything I have for my bed, starting from the foundation.  I live in a single room, meaning I am the only one in my bedroom.

Mattress

While I didn’t have to buy this, I thought it might be helpful to show off my mattress with nothing on it.  While it is possible to request a full size mattress through disability housing, I have the standard college sized mattress, which is a Twin XL.  After sleeping on it at college orientation with nothing (and lots of back spasms), I got an idea of what I would want to look for in padding.

Wamsutta Cool and Fresh Fiberbed

The Wamsutta Cool and Fresh Fiberbed is the only mattress topper I have ever needed for my dorm bed.  It is very soft, but still provides fantastic support.  It also fits nicely in the college washing machines.  I never had to add any other mattress supports, as this provides everything I needed.  It is a soft pillow top cover that fits my mattress exactly.  It can be found at Bed, Bath and Beyond and Amazon.

Room Essentials Pocket Sheets

I bought a fitted sheet for my bed as well as several different pillowcases from the Room Essentials brand at Target.  They are easy to care for and remind me of t-shirt material.  One of my favorite features is that the fitted sheet contains side pockets, which work as a great holding place for my glasses at night.  I bought two fitted sheets and seven pillowcases (more on why I bought so many later in the post).  Sheets can be purchased here, and pillowcases can be purchased here, but are only available in-store in some regions.

Life Comfort Blanket

I bought this blanket from Costco about two years ago and loved how soft it was- in fact, I fell asleep during move-in while using it.  One downside though was that it MUST be washed before first use, or else it sheds everywhere!  I was covered in gray fuzzballs, but the problem went away right after I washed the blanket.  It can be found on Amazon here.

Twin XL Heated blanket

My college allows students to have heated blankets, but not heated mattress pads.  I received a heated blanket as a Christmas present in high school, and it has been one of my favorite gifts ever.  I got a Twin XL sized blanket for college, and I use it often- I like to turn it on a few minutes before I go to bed so that my bed warms up.  I cannot find a link for the one I have, but it was purchased for less than $50 at Bed, Bath, and Beyond.

Room Essentials Microplush Blanket

This blanket is great for layering with other blankets, or simply on its own.  I have a very similar blanket on bed at home, so I knew I would want one in college as well.  It hangs off my bed a bit, but I think that is because of how my bed is pushed against the wall.  Get it at Target. 

Room Essentials or Xhilaration Comforter

I have both Room Essentials and Xhilaration comforters layered on my bed.  They are fairly lightweight, and I can also rearrange my blankets so that I am sleeping on top of one (the comforter pictured is from Xhilaration).  I found very little difference between the Twin and Twin XL sizes between these brands, as the comforter on top was labeled a Twin size and it generously covers my bed.  They come in a variety of designs- here is my Room Essentials comforter, and here is my exact Xhilaration comforter.

Yogibo Caterpillar Roll

This pillow is what keeps me from rolling face first into the wall every morning, a problem that I often faced when I lived in a dorm with concrete walls.  It also provides great support for my back when I sleep on my side.  Get it from the Yogibo website or on Amazon, with Prime shipping.

Room Essentials Extra-Firm Pillow

I needed a pillow that was cheap in comparison to my other pillows that I could use for layering, so picked up one of these at Target.  I don’t use this as my main pillow, so it didn’t really matter how much support it had.  Get it at Target here.

Beauty Rest Extra Firm Pillows

Why do I have five of these pillows?  Well, with all of my different spasms, I have found that these pillows, in combination with firmer ones, provide optimal support and help me rest when I have terrible pain.  They do not put additional strain on my neck, and I can sleep in any position that I want.  Why do I have an odd number of these pillows when they come in packages of two?  I don’t know.  I originally purchased these from Costco, but they appear to no longer be available.  Get them from Amazon with Prime shipping here.

Yogibo Sleepybo

I talk about Yogibo products more here, but this Sleepybo is a very firm pillow that reminds me of my beloved Yogibo at home.  This pillow works amazing when I have pain behind my eyes or for elevating my legs.  It is also one of the main pillows I use at night.  It is currently out of stock on the Yogibo website, but can be found here.

Purelux comfort cool pillow

Another great Costco purchase, this is the firmest pillow I have, and the cooling sensation is absolutely amazing when my migraines make it feel like my hair weighs a hundred pounds.  It also has a curved end, so I can insert in a neck pillow if I need one, which works awesome for when I have neck spasms.  I found it on Amazon here.

Cozybo

Since I use so many blankets,  I like to keep a lightweight one at the top for when I am sensitive to temperature, or suddenly develop a migraine and find that it’s too much energy to be underneath the covers.  As mentioned in my Yogibo review, this is my brother’s favorite blanket and Yogibo product, because it is both warm and lightweight, and the material is very smooth.  Get it on the Yogibo website here.

How I stack pillows

When I stack my pillows to go to sleep, I usually do it in this order:

  • Cooling pillow on the bottom
  • Beautyrest pillow
  • Sleepybo
  • Beautyrest pillow
  • Beautyrest pillow between pillow stack and wall
  • Extra firm pillow on side facing wall
  • Beautyrest pillow on side facing wall
  • Extra Beautyrest pillow for rearranging or against the wall

Toddler Safety Bedrail

So, my first morning in my dorm room, I rolled out of bed…and then fell three feet to the floor because I forgot how high the bed was.  My parents bought me one of these toddler safety bedrails from Wal-Mart and set it up for me, so I wouldn’t do something like that again.  Weirdly enough, I’ve gotten lots of compliments from friends who would visit my apartment and talk about how they were constantly falling out of bed.  It also helps to reinforce my stack of pillows. Get it from Walmart here.

I am lucky to be able to sleep for hours at a time, and have so many things to help me sleep as well.  A lot of these items will be on sale in the coming weeks for back-to-school, so keep an eye out and set price drop alerts!

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App Accessibility Checklist for Low Vision


About a month ago, my friend recommended an application to download on my phone. I wasn’t sure if they had thought about this, but there are many apps, even popular ones, that are inaccessible to people with low vision or photosensitivity. Right as I was about to ask, my friend said “don’t worry, the text can be enlarged to your size and there’s no strobes.” I was happy that not only my friend had checked for these things, but that the app developers had thought ahead of time and made their app accessible to people with low vision and photosensitivity.

Too many times, accessibility is considered a last minute thing to add to an application. With so many people identified as having a disability, app developers should be more aware of how important it is to consider diverse users when developing an application. Here are seven accessibility settings I check for when downloading an application, either on my Android phone or iPad. While this is targeted towards users with a disability, this also helps seniors and adults who simply forgot their reading glasses.

Can text be enlarged?

While some applications support the operating system’s default text settings, there are other apps that use their own fonts. Check that these fonts can be enlarged to a legible size- typically, I use a size 24 font, though bigger is almost always better. If there are different font style options, that is awesome too- people with certain print disabilities benefit immensely from weighted fonts like Comic Sans.

Can screen readers be used?

Many users use a tool like VoiceOver (Apple) or TalkBack (Android) in order to access text. Adding alt text image descriptions is also important so the user isn’t left guessing what was in the picture. If the image is purely decorative, write “null” or “decoration.” And please, have a skip navigation option, so the screen reader isn’t reading through unnecessary information.

Is everything displayed?

When the font is enlarged, make sure that all text, as well as buttons, are displayed on the screen in a logical manner. Some apps have text run off the screen, or do not enlarge buttons, which makes it impossible to use the app.

Is there sufficient contrast?

Is it easy to read the text on the screen? Having options to change the colors of the background or other buttons can be helpful in ensuring that users are able to see an app clearly. Having a night mode with a dark color scheme also can help reduce glare.

Are there strobe or flashing effects?

I have used a couple of applications that had random strobe or flashing light effects, or that used strobe notifications that could not be disabled. I even had a phone for about an hour that was a giant strobing mess. These apps were uninstalled immediately, and the strobing phone was returned as well. While a light at the frequency of a car blinker is fine, do not use strobe or flashing light effects, especially in red/blue colors, and give the user no way to disable them. For more information on who can be harmed by these effects, read this.

Can I use my own keyboard?

Some applications prevent the user from accessing a third party keyboard, or even the speech-to-text option. Allow users to be able to use any keyboard for maximum compatibility.

Do I have to think about using this?

If the user has to remember a complex series of steps to take because of accessibility settings being enabled, then the app isn’t worth using. One of the main design principles is that if the user has to think while using a product, then the designer has failed. Make sure users don’t have to jump through too many hoops.

Accessibility is very important to me, and I am always grateful when developers keep users like me in mind. While there are so many other disability areas to remember, I hope developers will continue to remember those of us with low vision and photosensitivity when creating apps.

Yogibo for Chronic Pain


I first learned about Yogibo long before I had chronic pain when we visited a store in Connecticut. My brother and I both loved how cozy everything was, but it wasn’t until years later that we discovered how amazing Yogibo really is.

I started dealing with chronic pain as a result of Chiari Malformation, a structural neurological condition, when I was fourteen years old, though I didn’t receive a diagnosis for four years. With this condition, I have constant pain in the back of my head, neck, and back, as well as the back of my legs and arms. I also get spasms and migraines, which makes the pain worse. I was also in a car accident that damaged my neck and increased my normal base pain level in my neck when I was a freshman in college. While I am very good at functioning through my pain, I rely on a lot of special tools to help me with pain management. A lot of these tools are Yogibo products.

Yogibos are similar to bean bags, but with much smaller beads and smooth fabrics, instead of crunchy feeling covers. They make a variety of products such as giant pillows, bedding, supports, and even aromatherapy. Their main target audience is children with sensory disorders, but the products are amazing for people with chronic pain as well. My brother and I have never encountered a product we didn’t like, and have difficulty picking a favorite. Below, I have outlined ten of my favorite Yogibo products and shown how they help me manage my chronic pain. This post is not sponsored by Yogibo, I genuinely love their products and want to share my favorites.

Yogibo Max
My first Yogibo product was purchased nearly four years ago when we moved to a new house and my brother and I got the Yogibo Max for our rooms. I spend hours lying down on it, as the support is perfect for my back and legs, and does not aggravate my pain. It’s easy to fall asleep on too, which is great when a migraine suddenly hits. When I broke my ankle, I found that lying on the Yogibo was one of the only ways I could relieve the pain. My friends and I use it as seating when they visit as well. This is the only Yogibo product I do not have at college with me due to its size, which is comparable to my Twin XL bed. Get it here.

Caterpillar Roll
I originally purchased this because I kept rolling into the wall while I was sleeping and would hit myself in the face. I have found that when I sleep on my side, the roll provides awesome support for my back, and combines the firm support of the original Yogibo with the soft cozy feeling of my bed. On particularly bad spasm days, I twist the roll so it wraps around my abdomen and provides compression. Get it here.

Yogibo Support
When I found out I couldn’t fit most Yogibo products into my freshman dorm, I was recommended the Support pillow. I most often use it when I am in the end stages of a migraine when I can use my electronics, but sitting upright is too much of a challenge. My friends also frequently sit on the floor with it- one of my friends will walk into my room and immediately grab it, and frequently talks about how much they like it. Get it here.

Zipparoll
After I was in a car accident and started having more neck pain than I ever had before, I was trying every neck pillow in sight, hoping it would help me manage my pain. The ZippaRoll became a fast favorite because of the familiar smooth and supportive material, as well as the fact it could be configured into a variety of shapes, as well as keep ice packs from falling down. I used it both on its own and in conjunction with other pillows. It also works well for lower back support when in the car. Get it here.

Moon Pillow
I purchased this around the same time as the ZippaRoll when looking for neck pillows. I found that it provided phenomenal back support when I was sitting upright, and worked as a neck pillow when I was lying down. I can put it underneath my hip when sleeping on my side, or underneath my chin to make sure I don’t strain my neck while sleeping. I also use it combined with the Yogibo Support. Get it here.

StressLess
This is one of the only tools that helps my shoulder spasms, and has helped me fall asleep many nights. I found that throwing it in the microwave for a minute and setting it on my shoulders provides an amazing soothing feeling unlike anything else. When I start getting spasms while talking to friends on voice chat, they will tell me to go microwave my shoulder pillow. It can also be thrown in the freezer, but I find that my shoulder spasms are more receptive to heat. It is an aromatherapy product, but this does not bother me as I find the scent relaxing. Get it here.

BodyHug
One of the newest additions to my collection, the BodyHug is another aromatherapy pillow. I typically use this for cold therapy on my back, and it also helps with my shoulders when I am lying on my stomach. I’ve also had friends borrow it when they had very bad abdominal cramps- some preferred to warm it in the microwave for about 30 seconds, others preferred the cooling sensation. Get it here.

Yogibo Mate
This may seem like a silly choice, as it is a stuffed animal made out of Yogibo material. I got one of these when I had eye surgery in December and found that it was great to lean against and squeeze, and I could easily rest on top of it if needed. Mine is a sloth, but there are other choices. Get it here.

Cozybo
My mom had bought this for me online and had it waiting for me at home. When it came in the mail though, my brother looked at it, felt it, went “hey this is awesome,” and promptly took it upstairs to take a nap. He says if he had to choose a favorite Yogibo product, it would be this one. I’ve since gotten my own, and it’s my default choice for when I take a blanket in the car, as well as during the warm summer months. I love the smooth material and how it is the perfect weight. Get it here.

Sleepybo
Another pillow that my brother enjoys, this is a normal sized pillow filled with Yogibo material. This was awesome after my eye surgery when I had to spend a while in bed, and it is one of my favorite pillows that I own. I like to stack it with another firmer pillow on the bottom and a softer pillow on top for optimal comfort. It’s currently out of stock online, but you can find it here.

 

Some of the other products currently on my wish list include the Ms. Bliss weighted blanket, WristWiz keyboard support, Yogibo round pillow, and Yogibo cube. My brother has also wanted to try the Lukso fitted sheet, Ms. Bliss weighted blanket, SinusMinus, and Yogibo Double. We both love Yogibo products, and love stopping by the stores whenever we see one- unfortunately, the closest one is currently almost two hours away.

Overall, I can’t imagine managing my chronic pain without Yogibo. As I finish typing this, I have the StressLess in the microwave and am sitting against the Yogibo Support with the Moon Pillow while wrapped in the CozyBo. These products are amazing for my pain management, and I am always quick to recommend them when a friend is dealing with pain. These products really are that incredible.

10 Staff Members To Meet in College


Before I even started at my university, I had already talked to almost three dozen faculty and staff members on the phone and in person to ensure that I would not have any disruptions in receiving my approved classroom and housing accommodations.  Because of this, I was able to learn what staff members would best help me advocate for myself and that would help me while I was in the classroom or in my dorm.  Here are ten staff members that I highly recommend talking to before move-in or the first day of classes.  Please note that some colleges might have more than one person in these positions.

Disability Services Coordinator

Before I even applied to my university, I interviewed the Disability Services office multiple times about how they handled students with low vision (read more about my questions here).  Luckily, the department is very proactive, allowing students to set up accommodations before any problems sink in, and I was assigned a coordinator that specifically worked with students who were blind or had low vision.  The first staff member I worked with was a wonderful resource and helped me write out an accommodation plan that ensured I would receive all of my services  I can’t say enough nice things about them.  Read more about my experiences setting up a file here.

Assistive Technology Specialist

Assistive technology will be your best friend in college, and it always alarms me when students don’t embrace it.  I was an unique case when I arrived at my university- as one of my colleagues puts it, “most college students don’t come in knowing what assistive technology is, let alone wanting to study it.”  The assistive technology department can help with assessments, scanning in textbooks, and providing access to labs.  Some assistive technology departments also organize testing centers for students with disabilities.

Testing Coordinator

The testing coordinator helps make sure that students are able to take tests, quizzes, exams, and more in an environment where they can receive their accommodations.  Students can be referred to this department either by the assistive technology specialist or through Disability Services.  Testing accommodations are typically written in to the Disability Services file, but some testing centers develop their own student files.  It helps to talk to this person before the first day of classes because some majors may require a placement test for math, foreign language, or English classes.  Read more about my experiences with the testing center here.

Special Populations Housing Coordinator

This person is likely part of the committee that handles the special housing requests, and ultimately assigns students with special housing needs to their spaces.  When I had issues with not being approved for special housing as well as my first housing assignment, this person helped ensure that I received the accommodations I requested, and assisted me in finding an accessible room.  This was incredibly helpful with my housing this year, as I am able to stay in the same dorm room that I did last year.  Read more about my housing accommodations here.

Resident Director

This is the staff member that oversees the dorm building and actually lives there as well.  My resident director has been awesome about relaying important information and is a great person to talk to if there is a problem.  They also have helped me with navigating outside and preparing for inclement weather.

Academic Advisor

Each major has an advisor that assists students with picking out class schedules, and can also assist if there is an issue with the professor.  They also tend to be very honest about which professors embrace having students with disabilities in the classroom, and which professors are more hesitant.  Some departments may have advisors also be professors, while others have one or two people that are full-time advisors.

Student Support Specialist

For students who are apprehensive about a situation or potential situation, talking to a member of the Student Support staff can be a great help.  When I was worried about a situation with another student, the staff listened to all of my concerns and helped me develop a plan to ensure that I wouldn’t have to worry about the situation anymore.  This department usually has a confidentiality agreement in place, meaning that they do not have to report what is said in the meetings unless the student requests that they do so.

Security/Police

I made a note with university police that I use a blindness cane and have low vision, so that they would be able to assist me easier if I called.  I also made a note of what room I lived in on campus so if there was a fire alarm and I couldn’t escape, they would know where to find me.  One of my friends who has a severe medical condition gave police an abbreviated medical history, so they could assist emergency medical staff in administering care.

Student Health

While I didn’t work with them until I had my first visit, having a copy of your medical history and health insurance with the Student Health office can be invaluable, especially if you have a chronic illness.  I have a note in my file that I have Chiari Malformation, chronic pain, chronic migraines, and low vision.  Read more about my experiences with Student Health here.

Mail Services Coordinator

This may seem random, but talking to the Mail Services coordinator is very important.  With my low vision, I cannot use combination locks, so I contacted this person to ensure that the mailbox assigned to me would be one that uses a key.  Another one of my friends contacted them to ensure their mailbox would be accessible to someone using mobility aids that couldn’t bend over.  In the event that it’s impossible to go get mail, you can contact the coordinator to authorize someone else to pick up mail as well- I authorized my resident advisor to get my mail after I was in a car accident, and other friends have authorized me to pick up their mail while they were in the hospital.

While not everyone may need to talk to each type of person on the list, I have been grateful for the resources that each of these people have provided me with.  They all have helped, in one way or another, to ensure that I am thriving in the college environment.

Too High-Functioning


The teacher is passing out the classwork for the day, and there is a noticeable lack of large print or colored paper at the bottom of the pile. As it comes time to give classwork to my section, the teacher looks at me and goes “Oh shoot, I forgot you needed large print. Figure something out.” My best friend next to marks another tally on a list we call “times Veronica didn’t get her work”- in one class, we have over two dozen tallies.  I often leave the classroom to go enlarge my assignment, since I know that if I don’t, the teacher will give me a zero and remind me of how they wished I wasn’t in their class. Even though I have an IEP, and have had one since kindergarden for my low vision, that doesn’t seem to stop teachers from continuing to discriminate against me. I report this to my case manager or other staff member in the special education department, and they pretty much say the same thing each time:

“You’re so high functioning, it’s easy to forget about you!”

My parents and I are in an IEP meeting because I currently have a C, or a D, or a F in one of my classes. The teacher has repeatedly forgotten or refused to enlarge my work, saying it is a waste of resources. I have As in almost all of my other classes, Bs in a few of them. My parents are trying to figure out how an A student is getting such low grades, and why nothing is being done about it. But, by technicality, Cs and Ds are passing, and the special education department says that everything is fine, after all:

“You’re so high functioning, we have other students to take care of!”

I need some additional resources in the classroom. I try to bring this up with special education staff both at my school and at the district level. Most of my requests are ignored, because I shouldn’t need the help. When people do appear from the district level, they are asking me questions about other students, or strictly talking about other students, saying that I am an easy case, they don’t have to worry about me, there are worse-off kids that deserve their time, and I am wasting their time. I realize that the only way I will succeed is if I figure it out myself, since they always tell me:

“You’re so high functioning, you don’t need our help!”

I’m a college student who is studying assistive technology and am waiting for a friend after a band performance. I’m holding my instrument, wearing sunglasses that block out the glare of the lights, and balancing my blindness cane in the other hand. While I’m waiting, a person I have never met walks up to me and starts asking a series of rude questions about my vision and how they had never met someone like me before. They do not stop talking to me, and get frustrated with me that I don’t respond. Later on, I am told to apologize and answer their questions, and their response is almost exactly what I expected:

“You’re so high functioning, that’s inspirational!”

My typical response to people calling me high functioning used to be saying “thank you, and so are you.” However, recently my attitude changed about this, and I realized that I could replace the negative phrase with a more positive one. Despite the best efforts of school personnel, I have been able to see past the negative circumstances given to me and still succeed in school. I have discovered my passion for assistive technology and helping others to succeed. My condition is a major factor in my life, yes, but it isn’t the only thing in my life. I am not just high functioning:

“I am high achieving.”


How Do People With Low Vision…Go To The Theater?

Living in an area that has a high emphasis on the performing arts, I’ve been able to attend a lot of fascinating performances and become more cultured. Comedy groups, dances, operas, plays, symphonies, and other events frequently stop by my area, and I love to attend. Here are some of my tips for attending these types of performances with low vision and photosensitivity.

Check performer’s website

Prior to buying tickets, check the performer’s website to see what to expect. Are there a ton of strobe lights? What about special effects such as fog or fire? Use your best judgment to decide if this will be a worthwhile event to attend. For example, one of my friends had invited me to an event that can best be summarized as ninety minutes of strobe light, so we decided to plan something else instead.

Signs at the venue

Check for signs at the venue that warn about strobe or flashing lights, and before the performance, ask a staff member about flashing lights again. My family and I went to see Michael McDonald (who does not use strobe lights) and the opening act, Toto, kicked off their performance with ten seconds straight of strobe light. Because Michael McDonald did not use strobe lights, we were not notified about the use of the lights until it was far too late, and I had to leave two songs into the concert. We did get a refund, though.

Reserved seating

When booking tickets, ask if there is any specific seating for people with vision impairments. The performing arts centers I have attended had about twelve seats at each show reserved for guests with vision impairments and their companions. Under the ADA, it is illegal to be charged extra for requesting these seats. When I booked tickets for my two friends and I to see the Reduced Shakespeare Company, we were charged the student rate and had a note marked on our tickets that we needed the reserved seats. We sat in the second center row and had no problems with watching the performance.

Descriptive audio

Descriptive audio allows users to get a description of the movement and light effects on stage. This device proved to be worth its weight in gold when my friend and I went to Mummenschanz, a mime show. Some performances may require advance notice about descriptive audio if they use a live interpreter (Mummenschanz did), but a majority of groups have their own recordings that they provide, such as when my brother and I saw a special screening of Birdman.

Navigating the venue

At a performance for Giselle, I became separated from my group and found myself fairly lost . The venue I was at had given me a phone number for a staff member to call in case of a situation like this, and I was reunited with my group less than five minutes later. Writing down the phone number on the back of my ticket proved to be invaluable.

I love attending these performances and supporting the arts as much as possible. Hopefully these tips may help others to have same level of enjoyment as I do!

Collecting Documentation

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For every two fantastic teachers I have had, there has always been one teacher that wanted to make sure that I knew that the teacher considered my disability to be an inconvenience and would refuse to follow my 504/IEP.  Yes, this is illegal, but that didn’t stop it from happening.  Over the course of the school year, my family would collect documentation of teachers not following my 504/IEP, and have it on record to show to the school board or other agency.  Here are six of the types of data we would download and keep for our records.

Class progress reports/grades

Most school systems have a database that parents and students can access so that students can review their grades, as well as view grades for individual assignments.  Some examples of these databases are Edline, SchoolVue, Aspen, and others.  Print off every page of data available for each course, and check to see that grades match assignments.  Also check to make sure that the student was exempt from assignments with inaccessible materials, and not given a 0.

Hall passes

At my first high school, I was frequently sent out of class to go enlarge my assignments when the teacher forgot to do so.  We saved these hall passes that contained teacher signatures and times that I was gone, and used them as evidence to show that my work frequently was not enlarged for certain classes.

IEP/504 meeting notes

My mom took notes on everything that was said during my meetings, and who it was said by.  She didn’t rely on my case manager or other people present to prepare a transcript.  In some school districts, parents can record an audio transcript during the meeting, but that option was never available to us.

Emails/letters

If the school district sends it, save it.  This is extremely helpful for filling out a timeline of events, and is less stressful than trying to remember who said what, and when.  In addition to an online backup, print out emails and save the files in a backup location as well.

Graded assignments, or assignments in an inaccessible format

I saved copies of every assignment I received, as well as keeping copies of the assignments that were not in an accessible format.  We would check these grades against the grades in our school database, and save the inaccessible materials as evidence that my 504/IEP was not followed in the classroom.  For a couple of assignments, I had attached my hall pass at the top so there was a signed time/date stamp.

IEP evaluations

At the end of the year, each teacher writes in an IEP evaluation, so that the special education staff and parents can see if accommodations were appropriate.  One teacher, who had not followed my IEP, wrote an evaluation painting me as the worst student to ever exist, and filled it with inaccurate information about my behavior, and the behavior of the teacher themselves.  It was unlike any of the other evaluations I had received from my other teachers, who wrote positive things about me, though noted that I had trouble remembering to hand in assignments.  All of the claims that the other teacher had made were disproven using the types of data in this post- for example, they claimed I would refuse to do my assignments and read on my eReader instead, but the grade reports showed that I was exempt from those assignments, and there was no evidence that I had been disciplined for my actions (something that would certainly happen if another student in my class did the same thing).  We also had copies of the assignments that were not enlarged.  It took months for that teacher’s comments to be removed, and it helped for us to have a copy of the original evaluation and every other piece of data as well.

In addition to these documents, save copies of SAPs, 504s, and IEPs, as knowing these accommodations will be very helpful when transitioning into post-secondary education.  In the event that the school district is investigated, all of these documents will prove to be invaluable to investigators as they learn more about the school district.

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.