#disabilityblogger

Let’s Talk More About My Guide Dog’s Retirement

Link ⬇️

(Or, how to survive Uni as a disabled student)

Disclaimer: 

This is what has worked for me. I don’t claim that this will work for everyone. Not every ADHD brain is the same. Also other axis of privilege, time of diagnosis, and support are different between people. I have severe ADHD-C and was diagnosed as a young adult and had little support to help me deal with my symptoms until I met my partner. Psychiatrists aren’t trained to help you deal with the range of issues you will face. 

Do keep in mind as well that some professors are just ablest assholes. The idea that someone is kind, empathetic, or will always follow federal law just because they are in a profession that gives them a power differential is ridiculous. You may also run into professors that also take pride in their exam distributions looking like a statistician’s nightmare. Keep an eye out for the obvious dog whistles, and do research before registration when possible. If you end up in these situations, drop the class during the add/drop period if you can. If not, be prepared for your GPA to take a hit. 

I’m writing this from an American perspective, if you are in the UK/Europe I lived in Scotland for 5 years and would be happy to help if you have questions regarding the Equality Act 2010 and the UN convention of disability rights.

A. Lifestyle:

1. Sleep hygiene. Sleep = study retention.

I had trouble sleeping for most of my life. I wouldn’t be able to fall asleep or stay asleep at the appropriate times. A lot of people deal with this by being “night owls” — i.e. just accepting that our clocks are set later than neurotypicals’. Other people deal with this by sleeping on a biphasic or polyphasic sleep schedule. 

There is another option though. You can train yourself to go to sleep at the same time every night and wake up at the same time every morning. This might take a couple of weeks for your body to adjust. Here is how I did it:

Take your morning dose of medication about 30-40 minutes before you actually need to wake up. This allows medication to kick in. It’s similar to the trick of drinking a cup of coffee before taking a power nap. I have two alarms. One to take my medication, and the other to actually wake up. My medication alarms have a particular tone so that I don’t take my medication twice.

Wake up at the same time every day, including weekends. You can’t oversleep or your body won’t adjust. Do not press the snooze button. Get up right away to start your morning routine. The 5-10 minutes that your snooze gives you isn’t going to make you feel less tired. It will make your feel groggy, which is something called sleep inertia. Your body doesn’t get to complete a full sleep cycle, and it will donk you up.

Add going outside to your morning routine. Even if it’s the winter, or mostly dark. I have an adorable greyhound, and he has to go potty as soon as I wake up. In the very least open your blinds/curtains and open your windows to get some fresh air and morning light. Studies show that light effects our circadian rhythm. I find that even when it’s dark out though, going outside helps due to the cool morning air.

Keep a consistent morning routine. Do everything in order like you are going down a checklist of tasks. Make your bed as your final task. Don’t get back in your bed. Your bed is for sleep or sex only.

Go to bed at the same time every night, no matter what. Medication has likely worn off by the time you go to sleep, and contradictory to neurotypical belief, when your brain wanders it can make it harder to fall asleep. So can hyperfocusing. I find that reading can keep me up as I will hyperfocus, but listening to audiobooks doesn’t cause those problems. I turn off the lights, put a seep mask on, and play an audiobook with wireless headphones to help me get to sleep. I recommend reading/listening to something light like fantasy or science fiction.  Save thrillers, horror, and mystery books to listen to during the day.

2. Exercise.

I recommend exercising in the morning everyday, cardio and strength training. Even if you just do some cardio 10-15 minutes, it is still beneficial. Most exercise physiologists would recommend a rest day, but I’ve found that lighter days work better than complete rest days. You will see a noticeable difference in your hyperactivity symptoms. It’s not simply that it gets the fidgets out of your system, it is good for a hyperactive mind and helps with emotional dysregulation as well. It will help you sleep at night too.

Always speak to your doctor before you begin any exercise regimen, especially if you are taking 60+ mg of ADHD medication and have not exercised regularly on your medication previously.

3. Eating.

Eat at the same time everyday. Your body will tell you you’re hungry at those times. It’s also helpful to schedule your food around medication so that you don’t repress your natural appetite. Also, not that it needs to be said, but the brain uses up a lot of calories. You need to eat to retain what you learn.

4. Emotional Regulation.

This is one of the hardest parts of ADHD that no one ever talks about. You may not even know what this is, or that emotional dysregulation is a symptom of ADHD. It’s never mentioned in the DSM or ICD because emotions are hard (and expensive) to quantify. A lot of medical professionals have never even heard of it. If you want to read up on it, I suggest reading work by Dr. Russell A. Barkley. To give you the basics though, ADHD brains fail to self regulate emotions. We have emotional impulsivity. When we take in sensory information for conscious appraisal the pathway goes like this: stimulus —> thalamus —> cortex —> amygdala. Our frontal cortex is not the greatest at giving us context, or telling us to chill out, so our amygdala can be in the driver’s seat often. This aspect can make us really fun people, because it can make us get excited easily and enjoy life to the fullest. It can also cause us problems. For example, expressing anger at your boss or teacher (even if you are rightfully angry) might not be the best—diplomacy may give a better outcome. Our amygdala doesn’t know what is best for our future selves.

So, how does one regulate emotion when you’re brain doesn’t function like you want it? Try practicing mindfulness. And no, I’m not taking about attending to everything coming into your working memory or weird granola hippy garbage. When you are having an emotional response, check in with yourself. Are you feeling overstimulated? Are you feeling understimulated? Are you hungry, are you thirsty? Are you tired? Is your medication wearing off? Notice patterns, notice what triggers the emotion, write it down. Develop a proverbial toolbox that can help you when you are not regulating your emotions well. This toolbox is individual to you, and it may take some trial and error.

Keep in mind that trauma is different than emotional dysregulation, although our emotional dysregulation doesn’t exactly help. A lot of us ADHD brains have experienced severe emotional trauma via ableism and abuse from the school system, from teachers, or from parents. It never gets talked about because it’s usually caused by someone in a position of authority, and we are hardly ever given a voice to talk about our own experiences. Find someone you can trust to talk to about it. Find ways to self sooth in a healthy way when re-experiencing that trauma. You may have complex PTSD. It’s difficult for us to get help for complex PTSD because society doesn’t recognize that disabled people experience trauma in a very unique way. Keep in mind PTSD wasn’t even considered a disability under the ADA until 2008, one couldn’t get social security for PTSD until 2017, and the ADA didn’t exist until 1990. If you do seek out help though, expect push back from some medical professionals, have someone that will support you through the process, and do so when you will not be experiencing new trauma. Also, remember, fellow ADHD brains are here and we all love and support you.

B. Disability Services:

I’m not going to sugar coat this. We are barely recognized as human beings, so our rights are always under fire. Being disabled in this world is like walking through a mine field. Not every university or work environment is going to follow the ADA. The ADA became law in 1990, and the abled have been dragging their feet ever since. It’s difficult to enforce, complaining to the government often leads to nothing, and getting a lawyer is expensive. It’s also hard to prove discrimination in court. The ADA leaves a lot of room for improvement. Ableism is a systemic problem pretty much worldwide. I’m not trying to upset anyone, but you need to be prepared for what you are up against.

1. Keep the nature of your disability private.

Never ever ever tell a professor or TA the nature of your disability. Tell them you have a disability recognized under the ADA which is federal law, do not tell them what disability you have. There are lots of tips on tumblr that will tell you to inform professors that you have x disability, and that they will be empathetic and blah blah blah. Those uninformed tips are putting your legal rights, and your grade, in danger. There are so many biases professors can and do have when it comes to ADHD and dyscalculia. You are just asking to experience ableism if you divulge. Some professors don’t believe that ADHD is a disability, or they believe that vaccines cause ADHD, or that you just magically grow out of ADHD when you turn 18 etc.  It isn’t your job to deal with their delusions, their biases, or their ableism — that’s their therapists’ or HRs’ problem. You do not have to tell anyone but your university disability services. Under the ADA you have a legal right to privacy, but if you divulge to a professor you are waiving that right.

I also wouldn’t recommend telling other students the nature of your disability. Unless you are pretty sure the other student also has your disability, but even then internalized ableism is a thing. You never know who they are going to tell, if they are ableist, or how they feel about your accommodations. You never want an abled student crying to a professor because they think your accommodations are “unfair”. If a student wants to know what disability you have, and you want to tell them something because you have become acquaintances/friends but don’t want to tell them exactly, say that you have a neurodevelopmental disability and/or a learning disability.

2. Advocate for your legal accommodations.

Disability services are not going to hold your hand. They are not going to simply offer you all the accommodations that you are legally allowed or would make you successful. They deal with hundreds of other students and likely have accommodations they offer everyone, regardless of the type of disability you have. Request accommodations that actually put you on the same playing field as everyone else. Read the ADA, and understand what reasonable accommodations are.

If you have ADHD, I would recommend requesting extended time on exams and assignments, a private room to take exams in that is free of distraction, handouts/materials and textbooks in text-to-speech capable formats, the ability to take breaks in-class or exams, reduced course load, and the ability to record lectures for note-taking. You may be able to request a memory aid for ADHD, as a lot of ADHD brains have very low working memory (also called short term memory) capacity. Part of our attention difficulties come from low working memory capacity as sensory input goes through working memory before it is stored in long term memory. Anything stored in long term memory must be pulled back into working memory to be used and manipulated. Get a psychologist that specializes in ADHD adults to test your working memory capacity if needed.

If you have dyscalculia, I would recommend requesting a memory aid (used for formulas, constants, equations etc), the use of calculator on exams and assignments, extended time on exams and assignments, reduced course load, and a private room for exams.

3. Get accommodations implemented.

This is a different process than getting accommodations approved. My uni makes me contact professors at the start of the quarter in an ‘engagement process’. Due to re-experiencing trauma, I avoid setting up a meeting with professors and just email. Emailing prevents professors form cornering you or badgering you to divulge your disability, or subtly threatening you about your registration or degree, and puts everything in writing so there is a legal paper trail. 

Professors may try to get out of their legal obligations. I have had this happen multiple times. I’ve even had professors tell me that accommodations aren’t helpful for disabled students, or that they are not fair to abled students — I responded with “well it’s not fair that I was born with a disability and that you’re gatekeeping disabled people from getting an education”… they didn’t take that well. Do not try to argue with a professor about your disability rights or accommodations, it will only make you upset and they will likely accuse you of being hysterical or unstable. I’ve even had a professor say that I “threatened” them when I simply reminded them of their legal obligations under federal law as they were trying to not implement accommodations. This is why email is the best choice — you have time to respond professionally and having the receipts is important to keep you legally safe. If a professor is being belligerent about implementing accommodations, tell disability services what is going on (forward your emails) and remind them that accommodations must be implemented in a timely manner under the ADA. If disability services tries to make you argue with your professor, say that you do not feel comfortable doing so. If they push further, tell them you would rather not without an attorney or other representative present — mention you would rather the university handle it internally as you are concerned bringing an attorney or representative into an argument would escalate the situation which isn’t ideal for anyone.

I have a standard email that I send professors during the ‘engagement process’ that I edit slightly to reflect the course. It is professional, polite, and reminds them of their legal obligations as well as university policy. In it I also outline what my approved accommodations are and suggest how they should be implemented. 

4. Any paperwork you have to turn in, make sure to do it early. 

Create reminders on your calendar, write the dates in your bujo future log, whatever you need to do to get that paperwork in on time. Read everything slowly. These are legal documents. If you have a support system… ASK FOR HELP. Seriously, don’t be afraid to ask your support system for help with legal documents.

C. Studying:

1. Choose two places to study.

I don’t like studying in the library or in cafes. I know it’s not as aesthetic to study at home, but it prevents me from people watching and getting distracted. I have two designated study areas. One is my desk, the other is a cozy couch. Choose locations based on stimulation and comfort. My desk is fairly understimulating, while the couch is a bit more stimulation.

2. Learn to use your hyperfocus.

Most reading this probably know what you need to get in the hyperfocus zone. If you don’t, then note any patterns/conditions when it happens so you will have an easier time using the only ADHD super power you’ve got. When you are hyperfocusing on studying, ride the wave for as long as you can. However, make sure to set alarms to eat, go to the bathroom, stretch etc. Don’t let your hyperfocus keep you from taking care of yourself.

3. Create a study routine.

I know I keep blathering on about routines, but it helps. Treat studying like you would training as a professional athlete. When you have a study routine, you never have to decide to study. That decision is already made for you. When studying for exams, make a checklist of everything you need to cover. Ask the professor in advance about what is going to be covered on exams so that you can make an exam study plan early. If your professor is a garbage person and won’t tell you use the syllabus, textbook readings, labs, lecture slides, and snoop on the internet for past exams. Last minute learning is never a good idea. The human brain simply can’t do it, and your working memory capacity is too low to cram.

4. Accept that everything will take you longer, and that it’s okay.

It sucks, it really does. Those neurotypicals don’t know how lucky they are. It’s going to take you longer to read, to learn material, and to do basically anything in life. That’s okay, you do you. Don’t compare yourself to others, it will only cause you to feel bad about yourself. Guess what though, you are already a statistical anomaly. Only 32% of ADHD children graduate high school. Only 22% of adults with ADHD get into university. Only 5% of ADHD adults graduate from university. You are already punching those statistics in the face by existing. Seriously, do what you need to do and fuck anyone that has a problem with it. You’ve got this! 

5. Create the environment you need for your brain.

Sometimes I’m feeling really over stimulated and I need complete silence. Sometimes I feel at a sort of stimulation equilibrium and I listen to lofi study beats playlists. Sometimes I feel understimulated or I’m doing something really tedious, and I need to put on a tv show or a movie in the background. I keep a list of TV shows and movies that I can put on in such cases. Pick things that you won’t really watch and that you are familiar with. It usually helps me transition so that I can start the studying task. Listen to your body and do what works for you.

6. Don’t use the pomodoro technique.

The pomodoro technique was made for neurotypicals. ADHD brains have difficulty transitioning between tasks. It’s better to study for as long as you can maintain focus or hyperfocus than rely on a set 25 minutes. Again, be sure to eat and use the bathroom! You don’t want to be taken off your meds due to weight loss, and you don’t want to get a UTI.

D. Tools of the Trade:

1. iPad Pro & Apple Pencil v.s. Echo Livescribe Smart Pen

I used to use the echo livescribe smart pen but now I use an iPad. It’s cheaper in the long run and I don’t have to worry about running out of paper. Apple has way better customer support as well as iCloud backups, plus they can find your device if lost. Now I only use the echo livescribe pen when taking exams. My university lets me use one from the disability office so that I can make verbal notes when doing long answer exam questions and to keep track of my thoughts if I want to skip over a question and come back to it. I requested it as an accommodation, it had to be approved by committee. They actually thanked me for being so creative and trained the person in charge of accessible technology so that it could be used with other students. It’s almost like asking disabled students about what helps us and our experiences is a good thing!

2. Notability

I use the app Notability for lectures as it can record the lecture and has great organizational capabilities. I usually copy/paste slides into my notes so that I can write on them as well. I also use Notability to read textbooks. It’s got fairly good text-to-speech compatibility, so you can move around if you need to. 

3. Goodnotes 5

I use the Goodnotes 5 app for a digital bujo as well as for making mind maps. It’s got some great shape recognition functions. Although Notability has improved their shape functionality, it’s still not as great as Goodnotes 5.

4. iWork 

I also use pages on my iPad to make condensed study guides / study notes. It’s also really great for writing essays or making tables. I used to hand-write study notes, but it takes way longer.

4. Omnifocus

Omnifocus is great for breaking down big projects into smaller tasks or making quick checklists. It’s a bit of a pain to learn how to use, but once you do it’s completely worth it.

5. Quizlet Plus

Quizlet Plus is completely worth it. I use it a lot for figures or structures I have to memorize, I draw figures in Notability and take a screen shot or grab it from my textbook. It’s a really amazing flashcard app. Also, if you have your textbook on your device, you can copy/paste definitions right into quizlet.

6. Studybreak

#disabeautiful is a hashtag I thought of because disabled people are beautiful too (looks or personality) and there is more to a disabled person than their disability.

03.22.20. Sorry for not updating in awhile! So my third animal physiology exam didn’t go so well, I did about average. The final went really well though! We have not gotten our grades yet, but I’m expecting to do well. We had our finals online due to the pandemic, so it was open book / open note which was awesome. We had to memorize less, and focus more on understanding so we could apply what we learned to novel situations. I know some people are really struggling with the transition to online learning, I guess they never had to learn how to regulate themselves and manage their time, but I’m thriving. I may write a post about how to work/study from home since it seems people are struggling. If any of my followers have anything they are stuggling with specifically, or something they want discussed, my ask box is open!

We will have spring quarter entirely online, which I am incredibly excited about. I hope this goes on until autumn, then maybe I can actually take more classes than I normally would be able to. Normally I have to have a reduced course load, but with online classes, that is less of an issue. Plus my time isn’t going to be micromanaged by neurotypical privileged professors! It really chaps my hide that my university told disabled students online learning couldn’t be done, that it fundamentally alters courses and reduces course integrity, but as soon as a pandemic occurs that effects the abled, they can suddenly make classes online and maintain course integrity. This pandemic has made it abundantly clear universities just don’t care about disabled students and want to play education gatekeepers.

The downside to the pandemic that has affected me personally is all the boomers and Gen Xers food hoarding in my city. I have celiac disease and food allergies, as well as disability related texture issues, so what I can eat is fairly restrictive. We have ordered instacart twice and they have had to refund most of our order both times this past week. I have no idea why people feel the need to hoard, grocery stores will remain open, delivery services will remain operational as they are essential. It’s just selfish to hoard food and other essential items like toilet paper rolls. Even more selfish to try to resell it and price gouge. Another downside is that my partner, like other people with autoimmune diseases, take plaquenil. Plaquenil helps prevent lupus patients from having deadly complications. Apparently shady doctors are writing perscriptions for their pals or wealthy patients that can pay for fake diagnosis and causing a shortage because there is some preliminary observational evidence (Not causation! Not even correlation! There hasn’t even been a study published yet!) that it prevents COVID-19. This has caused not only a shortage of plaquenil across the country, but the copays have increased. Also, unless a doctor is in the study or has an autoimmune disease or blood disorder, they shouldn’t be taking plaquenil. Sorry, but they signed up for these risks. Doctors complaining about the risks during a pandemic is like police complaining that they could get killed on the job — salary is high in those professions for a reason. If anyone reading this is planning on doing either of those things, don’t be a monster. Other people need food and medication to survive. You will be fine, just follow the WHO/CDC guidance.

Disclaimer, I’m not an attorney and have no legal training.... but my dad was so I’ve interacted with a lot of lawyers and have pursued litigation before. Honestly it would likely cost you more to pursue litigation than get retested by a psychologist. Universities have extensive monetary resources and could turn your case into a war of attrition. You can use student loans or grants to pay for testing as it is an educational cost, just like buying a laptop or assistive technology. I had a similar experience when I moved to the US and transferred to a giant state uni. Though they accepted my diagnosis, they couldn’t offer me all of the accommodations I requested without further testing. This is because a lot of psychiatrists only ask a short questionnaire, get parent testimonials, and use sometimes school records to make a diagnosis... obviously alongside the DSMV. Psychiatrists just practice differently than psychologists. Though some do use the same tests that psychologists use. Contact your psychiatrist and see if they have records of what was used for the diagnosis, your uni may accept it. The tests that psychologists use are extensive, mine took over 10 hours if I recall. I chose to do mine in one day, but often they are broken up into multiple days. They usually test for other disabilities as well due to high symptom overlap with other disabilities and high comorbidity. I had them also test for dyscalculia.

10/28/19- Sorry for not posting! Everything has been crazy. I got 92% on my second bio exam, I didn’t think I was prepared for it. So, that’s good news! In bad news, or infuriating news... I got in trouble for standing up to a douche on the class forum. I asked a question about the content coming up, and he (because of course it was a dude, right ladies?!) mocked me for wanting to get a start on making study materials for the next exam... And I’m the one that gets in trouble for saying it was rude. Apparently, I was too “negative”. How dare I call out some douche for making our class inhospitable to people wanting to study early? How dare I call someone out for making fun of studious students? I’m just so tired of my every decision, my every word, my very existence being picked apart and criticized. I’m tired of being judged more harshly than someone who is clearly in the wrong. I’m tired of being told to take abuse with a smile and a thank you. Neurotypicals, I don’t understand you. And I’m not sure I want to. What I experienced today is backwards. So of course, I got upset and my emotional regulation has been terrible all day because of this. Anyway, I hope you all are having a much better start to your week.

Instagram: physioblr

Shop & Free Bujo Spreads: here

09/24/2019 - Today I woke up early, worked out (cardio), did the dishes, did the laundry, and studied biology for ~3 hours. The first day of quarter starts tomorrow! I’m rather nervous. I’ve not heard back from my access coordinator about a new accommodation request yet. If she hasn’t replied by tomorrow, I will have to write a follow-up email. I always feel like I’m being annoying with follow-ups but time is of the essence. The in-class worksheets we are supposed to do in bio haven’t been converted to accessible format by the disability office yet. My financial aid is on hold while they process the reduced credit load disability paperwork. I’m a bit stressed to say the least. Wish me luck!

Instagram: physioblr