All About The Disability Law Center of Virginia


About two years ago, I was given a brochure by my Department of the Blind and Visually Impaired case manager for the Disability Law Center of Virginia. I put it on my desk, and didn’t think much about it, until I had a problem. I decided to call them and see if they could help, and I was pleasantly surprised that they not only gave me several different resources, but they ultimately helped me solve my problem. Below, I have answered some common questions about the organization, and included my experiences working with them.

Who are they?

The Disability Law Center of Virginia (DLCV) is a quasi-government agency that receives federal and state funding to help people with disabilities facing issues such as abuse, neglect, and discrimination. It is the Protection and Advocacy organization for Virginia. 

Is this a national program?

The DLCV serves only Virginia citizens, but each state and US territory has an organization like this- read this list here from the National Disability Rights Network to find your state. Some states may vary with services provided.

How much does it cost?

Legal services are provided free of charge, given that the case is accepted. My case was opened after a ten minute phone call and I immediately started receiving resources.

Do you have to meet them in person?

Because my case was closed fairly quickly (it was about two weeks), I never met with anyone in person. All of our communication was done over the phone and via email. I signed any paperwork necessary using email and digital signatures.

How often did you communicate?

Given that it was a time sensitive situation, I talked with them at least once a day until the problem was solved. Usually, we communicated by phone, though we also sent emails.

Are these real lawyers?

Yes, they are real lawyers who are licensed to practice Virginia law. There are other staff members and advocates who are not lawyers, but can also provide resources.

What did they do for you?

My case fell under the category of discrimination and denial of services. The law center made phone calls on my behalf and allowed me to give their name and contact information to people involved in the situation. They also wrote a formal letter and sent it. I had tried to solve this problem by myself prior to calling them, though I wish I called them sooner.

Can I use them for special education services?

If an IEP or 504 plan is not being followed, then a person may qualify for services through the DLCV. Every case is unique, but they do work with IEP and 504 plan violations. I wish I knew about this sooner, as my experiences in school would have been so different!  Read more about collecting evidence for IEP/504 violations here.

Have you had any more issues since your case was closed?

Fingers crossed, I have not had any more issues related to the initial situation I called about. Once the people involved in the situation found out that I had access to a lawyer, they were very quick about solving the problem and have taken steps to ensure the situation doesn’t repeat itself.

Verdict

I am so happy that the DLCV was able to help me, and wish I had known about them sooner, since I received special education services in school. Every student and parent should have their contact information- their website can be found here. After all, no one should have to deal with illegal situations without legal guidance. 

No Strobing Items At Check-Out


My mom and I were walking to the check out area at a popular chain retailer when suddenly, it seemed like strobe lights popped out of nowhere. The store was selling rapidly strobing fidget spinners, which were all flashing asynchronously, and at a high frequency, each spinner with a red, blue, and green light. I went to stand away from the display while my mom checked out. I was glad she was there, because otherwise I would have had to leave the store, due to my sensitivity to flashing lights.

I didn’t say anything to the cashier, or ask to speak to the manager about the giant strobing display. My head was already hurting, and I knew it was likely a decision from corporate, not the individual store, so there was nothing they could do about it. Still, I was surprised to see that someone had decided the best place for a rapidly strobing item was at a place where customers couldn’t avoid it. Red and blue lights are one of the most common triggers for adverse responses to flashing lights- an episode of Pokemon flashed red and blue lights in a similar frequency and hospitalized hundreds of children with seizures many years ago. There are many medical conditions that can be aggravated by strobe lights- besides seizures and epilepsy, there’s also migraines, PTSD, and anxiety, to name a few.

I am not demanding that the store stop selling this product, as I’m sure it is very profitable given the increase in fidget toys, which help people with attentional conditions, autism, and anxiety, as well as people without these conditions. I would just like to request that the product be moved to another area of the store, and have a small sign warning customers of the strobe lighting. Having this item in an area where it can’t be avoided is a medical crisis waiting to happen.

If you encounter a strobing display similar to this, do not get angry at the cashier or other employee at the store, as it was likely not their idea. It is more effective to send feedback directly to corporate. Below, I have attached a sample message I sent to the store I visited:

Dear Company,

I went to visit your store today, and discovered there was a display right next to the check-out counter that was selling rapidly strobing fidget spinners. Had I gone to the store alone, I would have had to leave and not be able to purchase my items. Strobe lights are a medical trigger for me, as I have chronic migraines, and there are many other people who can be affected by rapidly strobing displays. If possible, please consider move this display out of a high-volume area and having a sign warning guests of the rapidly strobing lights.

Thank you,

Veronica

While some people do enjoy strobe lights, there are many others who can have very adverse reactions or just be downright annoyed. While I’m not looking to outlaw all strobe lights, I do hope that companies will remember their guests with light sensitivities and keep flashing products away from popular areas.

Not Graduating Early


My sophomore year of high school, especially the second semester, was awful. Over half of my teachers did not provide me with the accommodations in my IEP, due to a lack of resources and the difficulties that came with integrating assistive technology into the classroom. One of my teachers frequently reminded me how they wish I wasn’t in their class, another teacher would say isn’t their problem I don’t receive accessible materials, and the support staff would tell me to go away, or tell me I just need to continue to self-advocate, and everything will be better. The only class I felt included in was band, which had always been a safe space for me. I only felt included in one out of my five classes.

I was told one day that there was something I could do, something all of the staff members agreed would be a wonderful thing. I could take five more classes, and then graduate the next year, one year early, receiving a general/standard diploma instead of the advanced diploma I had been working towards. Or, I could take two more classes and graduate with a modified IEP diploma the next semester. Alternatively, I could get a GED now and graduate at the end of the semester. Basically, they decided they wanted to get rid of me.

Because I had been in an educational environment where my disability was considered an inconvenience to everyone around me, I started seriously thinking about this. I’d been given pamphlets about these options, but I couldn’t see them, so I put them in my backpack. I researched the GED, put together a mock class schedule for the next year, and told my parents all about the ideas I had been presented. They were horrified that this had even been presented to me as an option.

My family started to consider moving to a neighboring school district, which had a full virtual high school program and would provide better opportunities for me and my brother. It would involve selling our house and leaving the community we had lived in for twelve years, but it was the only way I was going to graduate. My parents started doing research, and made an appointment with a guidance counselor at what would eventually be my new high school.

My mom and I went to meet with this guidance counselor, and my head was full of the information I had been given. When the guidance counselor went to ask me about scheduling, I repeated what all of the other staff at my old school had said:

“I’m five credits from graduating, I could graduate a year early if I don’t take band and choose a standard diploma!”

“No, you’re not doing that.” The guidance counselor immediately said, very matter-of-factly. 

“You’re nothing special, it’s not like you’re a genius.  No college would take you.  Don’t get me wrong, though.  You are a very smart girl, I know you will be successful here, and you will get an advanced diploma.  Now tell me, are you interested in AP Language and Composition? How about statistics?  I remember you said you are a band kid, the director here is adorable and everyone just loves him.”

By the end of the meeting, the guidance counselor had created a mock schedule for me, with two AP classes, math, science, video production, and a Microsoft certification class. I even had band in there, the advanced band class. My guidance counselor told me I was going to have a better experience than I had in my old school district, and if things didn’t work out, I could always be switched into virtual classes.

The thoughts about graduating early completely left my head after I met my new band director, and they told me how excited they were that I was going to be joining them. The cool thing was, they were a former student of my old band director, and I was told they are “a way cooler version of them.” They said they would be happy to help me whenever needed, and I left the school that day feeling much more positive.

I don’t want to think about what would have happened if I gave up, but I’m certainly glad I didn’t. My new high school was far from perfect, but I was able to graduate in 2015 with a 3.8 GPA and advanced diploma, something I never would have been able to do in my old school district. My guidance counselor, case manager, band director, and technology teacher all helped support me and continue to encourage me, even to this day, to continue advocating for myself. I’m now entering my third year of college in a highly competitive program, and thriving. I could have very easily been one of the many students who fall through the cracks and believe they are not worthy of receiving education, but luckily that wasn’t me.

If you relate to any of my experiences right now, dear reader, let me just tell you that you belong, and you are worthy of receiving a free, appropriate public education. I know it may seem like there are staff members who hate you, but please continue to stay in school and do your best with the circumstances given. College is a completely different experience than high school, I promise.

Ten “Weird” Things I Brought to College


As a student with low vision and chronic illness, my dorm room looks a little different than a typical room. I live in a single room, meaning I have no roommate, and share a bathroom with one to three people, as opposed to with the entire hall. I have been very fortunate to have this housing arrangement, and cannot recommend it enough for students with chronic migraines. Because of this atypical arrangement, I brought a couple of “weird” things to college with me to help me both inside and outside the classroom. Here are ten of the items:

Bed rail

My first morning at college, I rolled out of bed, literally- I fell from three feet in the air and landed on my face. My parents bought me a toddler bedrail for me to use at night so this experience wouldn’t happen again. I found it also keeps all of my blankets from falling on the floor. A bunch of my friends even went on to buy bedrails for their own dorm bed. My parents found a bedrail for $20 at Walmart.

Desktop computer

I will have a full post on why I chose to bring a desktop computer, but here are the simple reasons- about 50% of my classes are virtual, I rely on digital tools for school, and type all of my assignments due to dysgraphia. My specific computer also has a built in 3D scanner so I can easily enlarge items.

Contact paper

Having low vision means I’m more prone to spilling things and knocking them over- it happens so often, my mom called to tell me she saw a child with glasses knock over a cup and thought of me. I decided to cover my dresser, desk, and closet doors in contact paper to help protect against water that will inevitably be knocked over, or other messes. It cleans up very easily and doesn’t damage the furniture. I got marble contact paper from Amazon for about $7 a roll, and used 7 rolls total.

Blackout curtains

I have severe sensitivity to light when I have migraines, and require a completely dark environment to recover.  Lightning storms, or as I call them, nature’s strobe lights, can also affect my recovery.  My family purchased these blackout curtains from Target that block out all light when they are closed, and I had them fire proofed for free at a college event on campus, as curtains are required to be fire proofed in the dorms.  I got two of these curtains here.

Google Chromecast

There’s a full review of the Chromecast here, though I have used this device often. I stream videos, use it as a second monitor for my computer, screen-cast my phone, and more. It was a little difficult to set up, but my post explains how I did it. Get one here.

Rolling backpack

Starting my senior year of high school, I would use a rolling backpack for all of my school supplies. I am able to carry all of the materials I need for class without throwing out my back or shoulders. While there are some days I have to use a backpack (like when I have to bring my E-Bot Pro or musical instrument to class), it has saved me on many days. My backpack was purchased at Costco, but I found a similar one here.

Video camera

While my college has video cameras for students to borrow, I chose to bring my own video camera to school. I had purchased my camera about a year prior for a mentorship, and enjoyed doing videography in high school. I have used the camera surprisingly often, from doing class projects to practicing lectures to entering contests, along with helping many friends with film projects. In addition, I brought a tripod that fits in a bag stored underneath my bed, and a camera bag. My camera has been discontinued, but it is a JVC shock, drop, and freeze proof camera with a touchscreen.

Tons of stuff for my bed

I have a full list of the items on my bed here, and probably brought way more items for my bed than the average student, mostly because I spend a lot of time in bed recovering from migraines. As a result, I probably have one of the coziest beds on campus.

Urbio

The Urbio Perch is a wall storage system that uses command strips and magnets. I use Urbio boards on both my walls and on furniture- I attach pens and highlights to the side of my desk, toiletries to the side of my dresser, and I have four boards on my wall that contain my hair dryer, chargers, winter items, and important papers. Stay tuned for a post on how they look in my dorm room. Get it from Container Store here.

Echo Dot

This is a new addition to my electronics collection, but it has been an amazing tool. I wrote a full review on it here, but some of the many things I use it for include as a talking clock, timer/alarm, weather forecasts, calculator, news source, and especially for music. Get it here on Amazon.

While these are definitely uncommon items to pack for college, I have gotten a ton of use out of them and am glad I didn’t have to have my parents mail me these items later.

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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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.

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.

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.