AT/Software for High School andCollege Students with Disabilities

Having a disability or being chronically ill in college comes with many challenges: time management, memory, missing class, taking notes, studying, typing papers, reading textbooks and more! While this by no means will be an extensive list, here are some applications, software, and modifications that you might find helpful broken down by task. *Note: if you have an IEP/504/ College Disability Accommodations, some of these may be available to you for free through your school or may be covered under insurance so talk to your case managers!*

Time Management:

Timeglass (Free) List of three timers in a screenshot of timeglass app

This is a simple application that allows for the use of multiple timers at once, including multistep timers, repeats, customizable icons, and a visual timer. There is a limited feature free version on iTunes.

VisTimer Lite (Free)
screenshot of visual timer
Another simple visual timer application that has customization options such as display size, circle color, alert sound, and time warnings. Available in iTunes Store here for free with ads, upgrade available. Compatible with iPhone and iPad.

Things 3 ($9.99 iPhone/Watch)

I have tried many to-do list-esque applications over the years and while most start off great I find I stop using them after a week or so because they are too complex, don’t sync well between devices, or don’t help. Things 3 is the exception. It has iPhone, iPad, Apple Watch and iMac/Macbook compability, iCloud, Reminders and calendar syncing, it clean and easy to use and helps me immensely with homework, projects, things I need to buy, and my “remind me to think of…”. It is available here.

Why I love it:

items are easy to move, categorize and mark as complete
a log book is kept for your completed items for the inevitable “oh shit I didn’t actually do that” moments
it syncs well with devices
it syncs with iOS Reminders, Calendar (including google), iCloud, and various devices flawlessly
You can set due dates, reminders, and assign a time to complete it
You can make subcategories
It helps a lot with packing and grocery lists too

Taking Notes:

Microsoft OneNote (Free)

Microsoft OneNote is part of the Office365 suite and is like Word, Powerpoint, and a Notepad combined. It offers the users to create subject sections, draw freehand, add tags such as “question” “to-do” or “follow-up”, simultaneously record and take notes, highlight, change page color, and more! Additionally, if used on Windows, “Learning Tools” is a free package download that includes features such as text-to-speech, focus mode, font-spacing, page coloring options, reading tools for low vision, dyslexia and other print disabilities, and more! I find OneNote to be the most useful one touch screen devices, especially for working out things like math problems that are hard to type out correctly or quick sketches. OneNote is also integrated with Office Lens (below).

screenshot of OneNote application screenshot of One Note app

Notability ($9.99)

screenshot of notability app on ipad

I have only just started using Notability by Ginger Labs instead of OneNote and while the two applications have large amounts of crossover in terms of functionality, I prefer Notability’s design as well as ease of integration of pictures, better functionality of audio recordings, more functional highlighter, and overall more functional to use and sync.

Writing/ Reading

Wrise ($59)

Wrise is an accessible word processor for Mac that includes word prediction, text-to-speech, tags, and an export to iTunes feature. It is made by Assistiveware and is switch compatible. It also has tools to help people who struggle with similar sounding words, spelling, and reading.

Dragon Dictation (Naturally Speaking- $69.99)

Dragon provides one of the best speech recognition/dictation softwares out there. For those with fine motor issues, hypermobility in fingers, or who just prefer to talk rather than type, this is an amazing software. Dragon works with most common word processors (Word, Notepad etc) and can also be integrated into social media and web browsing.

Studying

Quizlet (Free)

Quizlet is a free study tool that allows the user to make e-flashcards, practice tests, and learning games all from a study set. The free version allows for pictures to be used on flashcards as well but you are limited to a small database. Additionally, study sets can be shared with classmates, worked on collaboratively, or you can search for pre-made study sets by other users. Some of the really beneficial tools of quizlet are: web based with app options, several different modes for learning from traditional “flashcards” to an adaptive learning course that prepares you for your exam. As someone with a learning disability, the ability to have the cards/ questions read to me when I want to is a major plus.

Crash Course Videos (Free)

These videos are fantastic! While you are limited to the topics they cover, I find them informational and think they do a great job of summarizing and presenting information without being too complex. These are great reviews for science courses, history, and other introductory courses. Also just fun to watch to learn something new. They even have videos on study skills!

Khan Academy (Free)

For more specialized informational needs, especially in math and science, Khan Academy does a good job of summarizing, providing examples, and covers more discrete topics.

Other

Office Lens (Free)

Office Lens is a free mobile application (integrated with OneNote) that gives you a scanner and optical character recognition (OCR) in one application — and for free. I use this app all the time!

Things it can do:

take a picture of a whiteboard at an angle, auto-crop it, and perform OCR (scans and converts characters to type)
take a photo
take a picture of a business card, crop it and perform OCR
save anything you snap to camera roll, OneNote, PDF, email attachment and more
scan and read a document to you
scan a document, perform OCR, send document to OneNote, then edit the document
compatible with VoiceOver and switch access

Keeble Accessible Keyboard ($24.99)

Another product of Assistiveware, Keeble is for anyone with vision issues, limited use of hands, dyslexia, and switch users this app is an accessible keyboard that can be added just like a foreign language or emoji keyboard and allows for customization of color, font, word prediction, quick phrases, auditory feedback (speaks what you type), Open Dyslexic font, ALL CAPS, and arrangement (ex. switch user making keyboard in frequency order as opposed to QWERTY).

Hope some of this helps!

College a cycle chart

Life Hacks: Spoonie College Edition

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So I’m actually starting my 5th year of college going straight (fall, spring and summer except one summer). I have attended three different universities and started out only minimally effected by health problems (mostly GI, migraines) and wound up here, a professional patient needing complex care and supports. While each college had different systems, strengths and difficulties, I learned some valuable things about being successful in an environment that is largely unsuited for those with chronic illnesses.

Here are some things I have learned along the way, in no particular order and not institution specific:

1. Disability services: The process towards getting accommodations is LONG, often repetitive, and stressful. Often, accommodations are generic, inflexible, and “base packaged” (you probably will get about (max) half the things you need to keep up and be successful and the rest is up to you. Here are some tips to get the most out of the services offered there (and your time and energy):
  1. Start paperwork ASAP, pester those overworked doctors to get their part in before the semester starts as accommodations will never be retroactive. Also, make copies/ scans of every form or piece of documentation that leaves your hands. Things get lost all the time.
  2. Know which battles to fight. Back to the max 50% of what you need thing, often times you will receive basic accommodation and get some pushback asking for more. Is that note taker necessary for you to succeed or can you work out a way to record lectures, ask a classmate to look at theirs, use assistive technology and save your fight for extended time on tests where you might fail without it.
  3. Send a personal note/make a personal introduction along with your formal accommodations sheet. In my experience, this has helped teachers relate to me, understand how my disabilities effect me and my learning/schooling, and also makes it seem a lot less like taking passes on things and more like “I expect this to happen, I don’t know when or where or how, but here’s a proactive heads up”. It isn’t necessary to name or intricately discuss your diagnoses to be effective.
  4. You’ll have to do a lot of accommodating for yourself/ working 1:1 with teachers.
  5. In most universities, students with disabilities have priority class registration. SUPER HELPFUL!!!
2. Housing: While living on campus may at first seem unappealing (again, varies in atmosphere by university), there can be a lot of benefits especially if you can’t drive.
  1. They are required to have ADA accessible rooms. My room has widened doors, a lower peephole, lower closet bars, grab bars in the bathroom and shower, a fold down shower bench, and lowered light switches.
  2. Accommodations for single rooms can be made for those with compromised immune systems, PCAs, MCAD, severe GI issues, and other medical reasons.
  3. You can have a quiet place to rest in between classes, are close to dining (if you eat), and have access to evening events such as clubs, performances, and hanging out with friends without being too far from home or living in the Student Union Building.
  4. DOWNSIDE #1: If you have problems that can be exacerbated by fire alarms… apparently no one knows how to cook MFing popcorn.
  5. DOWNSIDE #2: Germs spread fast and easy, may not be the safest place if you have a weak immune system without taking precautions.
3. Class Schedule Advice

1. 1. What you want isn’t always what is best. Sure, like nobody wants 9 AMs every day… or any day… but for me, the later in the day the more medication wears off, pain increases, spasticity increases, and overall deterioration occurs. Class is already hard enough to sit through, concentrate, learn and remember… don’t make it harder on yourself for a potential 2-3 more hours of sleep. Or flip all that if that’s how your body works.
  2. Register ASAP. Classes fill up, plans change.
  3. Schedule max number possible classes, attend all the first week and then drop as needed. That way you secure your seat, get to meet the professor, see the syllabus, see if there are major barriers in the class (i.e. Service dog you’re allergic to in a small classroom)
2. Medical care/ health safety

1. If you live on campus, tape a folder somewhere visible (wall, by light, dresser) and write EMERGENCY INFO on it super big and put in your medical emergency info, copy of your license/state ID card, insurance card (if you have it), and your school ID/student ID #
2. Start a file with on campus health. Even if they never care for you it is helpful for them to have your base information in case you need them in an urgent matter, have doctors far away, or just need something simple like a wound cleaned. Most student health offices will be able to do allergy shots, some will even help manage infusions.
3. Introduce yourself to the campus chief of police, especially if you have the potential for reoccurring EMS issues like seizures, anaphylaxis, diabetes etc. They are usually first on the scene and can inform EMS.
4. Wear a medical ID bracelet. Bonus if it has a way to see all your info. See my post on my system here.
5. If you have asthma, MCAD, or immune problems I highly suggest purchasing a high quality, relatively comfortable mask to wear outside around campus. I pass smokers, high perfumers, and other triggers CONSTANTLY on campus. I use these and love them (recommend the ones with 2 filters for comfort and breathability).
Miscellaneous
1. Join one club. Even if you only go twice a year, you may meet some people and you feel somewhat a part of things.
2. If you live on campus, get to know some people on your floor. They may be good for procrastination buddies, errand helpers, cards against humanity mates, or near family friends.
3. Don’t bring everything you own to move-in. Stuff accumulates anyways and it is a pain.

Hope this helps. It can be overwhelming but it IS manageable with the right supports.

Where’s that Flintstones Chewable Morphine at?

I know I literally just said I don’t like talking about my pain and now here I am doing a post on pain. I decided I felt like it was an important enough aspect of me and EDS and since I don’t often talk about it, awareness month might be a good time for that. So here goes!

#spoonielife

I can not remember not being in pain, there may have been times where that has been the case but I thought I was normal until middle school (diagnosis backstory here). Nowadays, most of my chronic pain comes in one or all of the following forms: muscular (spasms, tears, fatigue and irritation from subluxations and dislocations), joint movements (subluxations and dislocations), mostly constant dull all over pain (I’m sure its a sign of being a demi-zebracorn?!), migraines (light sensistivity, eye strain, post-concussive issues, cervical spine subluxations, cerebrospinal fluid blockages, Chiari, position of the earth and sun, stress, lack of “good” sleep), GI pain (digestive tract paralysis, gastroparesis, mast cell activation in gut (MCAD) ), and other. Between allergies, MCAD sensitivities and Long QT Syndrome restrictions the only pain medication I can take is morphine and it gives me a lot of strange symptoms so I avoid it unless absolutely necessary. Pain management in EDS is almost always complicated due to the varying types of pain, comorbid conditions (including other pain disorders such as fibromyalgia), and severity and chronic nature of the pain. Because every case of EDS is different, what works for one might not work for another. I have zebra friends who manage pain with essential oils, some with opiates, some with PT and yoga, some with sheer willpower… everyone is different.

As EDS is a mostly invisible illness, people I meet and befriend are often shocked that I am in pain. I have learned to hide it well and have learned exactly how far I can push myself before the pain becomes too bad (though sometimes I totally disregard that knowledge). I really dislike that pain scale but on a good day I usually average a 5-6 and bad days a 8-9.5 for people who that means something to. Even well managed, pain effects your whole body, mind, and life. It does not have to control it, but it is a huge part of it.

Another thing I find people have a hard time understanding is the fluctuations or flare ups of chronic illnesses/chronic pain. This runs many into questions like “I saw you walking yesterday…why are you in a wheelchair now?” or “But last week you could unload the dishwasher, I saw you do it…are you just trying to get out of doing it?”. These questions can be prefaced either judgmentally or curiosity but are hard to deal with over and over again, especially on high pain days. Additionally, many of us face invalidation from medical professionals that impact our reactions and instincts, further complicating things. In my experience, leading a comment or question with “I want to understand but I’m confused…” usually gets a better reaction. Pain can be very isolating and can make us say or do things we don’t like. Pain sucks guys. DUH.

May the forth be with you all and beware of the revenge of the sixth!

"Falling Behind"

I’m a junior in college.
Actually, well, I should be a junior in college.
I’m actually a sophomore in college by credits, junior by age and semesters.
But I’m catching up!
No, actually I’m not. Still chugging away at what feels like a cruise controlled speed. Chugging away at the arbitrary set number of hours you must sit in school until deemed “educated”. And I’m readily becoming more and more frustrated trying to arrange class schedules, accumulate credits in any way possible, and get a good enough grade so that I can move on. GMU has this nifty program called Degree Works that takes your credits and tells you what you still need to graduate, which classes fill that requirement, which classes have qualifiers, ya get the drift. According to Degree Works, after almost 9 semesters now, I am officially half way.

College is not friendly towards students with chronic illnesses. Despite many universities attempts to bridge the gap with programs like disability services, the odds are still stacked against you. Many classes will drop you if you have too many absences (sometimes even 1), regardless of your ability to keep up with the work. College is also a breeding ground for germs, poor eating and sleep habits, and stress. Being physically able to get out of bed is one thing, going to class another, and then absorbing it? How about homework? Most homework either involves reading, computer use, studying, or essay writing. Most of those tasks are near impossible when eye strain, fatigue, migraines, photo sensitivity, concentration issues, and other fun cognitive issues plague your daily life. Reading that may take most people 30 minutes takes an hour for me. While most college students become sleep deprived zombies around finals too, finals for students with chronic illness can be especially challenging. Most people get sick during finals but because the pressure is on, non-chronically ill students are more likely to go to class, despite being sick and often times, contagious. This puts those of us with weaker immune systems at risk for getting very sick during finals when we are already probably pushing our limits.

All of this and more makes me look at that half way mark and want to cry, but not tears of joy. Finishing college seems impossible (all my family out there chill, I know its not impossible and I’m not dropping out). It makes me sad because before I got sick I was so excited about college. About life beyond school. About making a difference. Now I feel like that motivation and joy of education is being slowly stripped from me. I don’t want it to be this way. I want college to matter, to be something I enjoy rather than just another constant struggle. I’m scared this fog in my brain will never clear. I’m okay with “falling behind” but I’m not okay with staying behind.