patient inclusion: how long overdue?

I’ve been on this huge audiobook kick the last week. As in, since December 12, I have read 8 books. (This is what happens when I finish my work early/do not have enough work to do. Honestly, this is fun but I’d rather be writing.) Maybe I’m just trying to hit my 40 book goal for 2016—I am at 26. The answer seems like yeah, right.

Through the Centre for Equitable Library Access program (CELA), Canadians with print disabilities can access a variety of audio or braille books on loan, for free. Most of these books are recorded by the CNIB (Canadian National Institute for the Blind), and as such, Canadian authors are well-featured, and I’ve actually been able to find a book on goalball in the collection. Following Margaret Trudeau’s Changing My Mind, I read Invisible: My Journey Through Vision and Hearing Loss by Ruth Silver.

On attending a conference about promoting independence for those who are both hard of hearing and visually impaired (Deafblind or deaf-blind), she writes:

There was only one speaker who was deaf-blind.
—Ruth Silver in Invisible: My Journey Through Vision and Hearing Loss 

Immediately, I rewound. I listened again, and shook my head.
Typical.

I do not know for certain what year Ruth Silver attended this event in question, of which she wrote “There was only one speaker who was deaf-blind,” prior to starting the Centre for Deaf-Blind Persons in Milwaukee in 1983. She published the memoir in 2012. In any event, that is twenty nine years prior to the book’s publication, and thirty three years ago as of 2016.

I do know that not much has changed.

In mid-November, I had the opportunity to attend an event in Toronto, one that had patients in the title no less. While matters were not “solved”, in response to Twitter-vocalization regarding true patient inclusion by Bill and I, the organizer reached out to us via e-mail following the event to “address” our concerns. The crux of the matter is, even an event that was meant for patients, did not feature a single patient speaking on the matter at hand. While you can scroll back in my Twitter feed or contact me directly to learn more, I’m not going to give nods to the event itself. One, because as much as this event frustrated me, I want to believe they had good intentions even if they were way off the mark, and two, because I believe that these nonprofits are likely doing their patient communities good: it is not up to me to speak on the actual work of these groups. (Disclosure: They paid my travel and expenses, they being pharma, I presume).

So here it is again. There was not one single patient on the agenda. I don’t want to hear any of that bogus “we are all patients” crud (nor that taxpayer BS)—yes at some time we are all patients. However, there are those of us who are chronic patients, reliant on medicine to stay healthy and/or alive.

How sad is it that as this uprising, somewhat-bright, restless collective of humans craving better, how is it we have not gotten this straight in thirty three years?

I wish I knew. Documents like the excellent Patients Included Charter for Conferences get us closer. But they need to be implemented, advocated for in themselves. And we need Canadian patients to be in on, in for this movement, too.

It’s been 33 years. And we’re only starting to figure this out. The uprising is bottom-up, not top-down. I mean, or the reverse, depending on how you view who is in power.

so must we demonstrate
that we can get it straight?
we painted a picture
now we’re drowning in the paint
let’s figure out what the fuck it’s about
before the picture we painted
chews us up and spits us out 

sick of painting in black and white
my pen is dry, now i’m uptight
so sick of limiting myself to fit your definition.

redefine.

—redefine, incubus

We are well overdue to break the typical.
Probably, well overdue by well over 33 years. 

find me at understood: “what ADHD feels like to me”

ADHD doesn’t define me, but it does help me understand who I am.

from What ADHD Feels Like to Me.

I’m stoked to finally share my first post on Understood’s “The Inside Track” blog! What ADHD Feels Like to Me shares a glimpse into my life with undiagnosed learning and attention issues, and what finally identifying my ADHD and learning issues means to me.

understood promo 1

The experience I’ve had working with the Understood team has been a brand new one to me. For the first time, I’ve worked with an editor—and, while he changed every ‘university’ to ‘college’ in this post, ‘cause America, he is beyond fun and the process has been awesome. (Hi, Andrew!).

Understood gets me.
I found the weekly #LDchat on Twitter run by Understood not long after my diagnosis. From that point forward, until I entered a contract agreement with Understood in September (and, let’s face it, even since then. Also, disclosures here), I would continually and politely remind the Understood team about the existence of adults with learning and attention issues.
Unlike so many groups, Understood listened. We threw some direct messages and e-mails around, and on September 1st, I signed my first contract with Understood (renewed January 1, 2016). While Andrew and I work together to rework and polish a piece to go live, honesty is as important to Understood as it is to me: everything I write on Understood reflects my experiences, feelings and opinions—Andrew made it clear that nothing would go up that I wasn’t 100% on. And, he’s been equally 100% solid on that.

What ADHD Feels Like to Me has been awhile in the making, but the process to get here has been awesome. I’m thankful for Understood: both for this opportunity to share my story with a bigger audience, and for what they offer parents of kids with learning and attention issues.


Disclosure: I receive compensation to blog for Understood.org (note: I would have done it for free but they offered me money). I am under no obligation to share these posts on Kerri on the Prairies or via social media. (But, you know, I like them, so why wouldn’t I?)

post secondary with disability or chronic disease: an introduction to accommodations for accessible learning

Diagnosed with learning and attention issues during my fourth (of five) year of university, I have said before that having my psychoeducational assessment done is one of the best things I ever did—next to that, was taking that next intimidating step to receive accommodations for the learning and attention issues that were brought to my awareness in a clinical fashion no more than 24 hours earlier. I have nothing but good to say about my experiences from that point forward receiving accommodations as a student with a disability. The other day, my friend Jenni posted on Facebook about her apprehensions surrounding taking the advice that she contact student disability services at her university.

While not intending to reinvent old posts (you can read those here), I’d like to summarize [or expand] the conversation I had with Jenni in the form of a hopefully usable rundown: of the help I have, or have heard first-hand stories of, people receiving from their post-secondary institutions, so that students with a variety of disabilities can consider for themselves whether or not these may work for them, and see if their campus offers such accommodations (or would consider adding them to their options).

Intimidation is normal.

Perhaps students who have been dealing with accommodations for their whole lives will feel more at-ease discussing their needs to university staff (I’ll be using the term university, but this applies to all post-secondary institutions)—or, it may be intimidating to move out of the familiar school system and into navigating the post-secondary environment. From my experience speaking with students newly accessing accommodations in university, these students can often feel very intimidated to take the first steps OR to self-advocate.

Self-advocacy (or, simply, sticking up for yourself and communicating what you need!) can be made more challenging with certain disabilities, or if a student don’t have much experience self-advocating. Accessibility/disability services staff deal with students with disabilities every day. If you don’t know what to say, that is okay. In my experience, I was simply asked questions so that it could be better understood what I might need to make my university experience more successful.

Bring Documentation

If you do one thing to prepare for your meeting with the necessary people on campus, bring documentation of your diagnosis. If you have a psychoeducational assessment report, bring that (they usually need to be done within the previous five years, but your campus may vary). If you have a chronic medical condition, or take medication that may affect your ability to learn, attend class, or sit in standard classroom seating, bring that documentation. They can’t help you if they don’t know what you’re dealing with!

Self-Advocate!

If you struggle to communicate your thoughts verbally (or freeze under pressure), you might consider requesting to make accommodation arrangements by e-mail, or provide a list to the person you are meeting with what areas you struggle with or ideas you have. Accommodations are meant to level the playing field, not provide an advantage. With that said, I have had a lot of success with trial-and-error: “Could we try [x]?” “I’ve heard this work for someone else in similar circumstances, is that an option we could try?”

Remember, it’s about you, but it’s about forming allies—we can be an important word! It’s always worth a try: the worst they can do is say no—and in that case, you’re not any further behind than when you started, you’ve just learned more about yourself, your circumstances, and what might be able to be done in the future if plan A doesn’t work out. (Look, my plan C for anatomy wasn’t even my plan and it’s the one that ended up working—be OPEN and people will be open to your suggestions, too!).

As well, it’s important to be as transparent as you feel comfortable with: student support staff are trying to help you, and they have probably heard everything before anyways. Anything you say will be kept confidential, and if—like many of us—you are feeling overly emotional surrounding discussing your disability or chronic disease, that is okay. I know that I am not the only person ever to have cried in our kickass accessibility advisor, Jess’s, office, and I’m sure someone else has cried in there since I last did, too. The last time I wrote an anatomy exam (my last anatomy exam ever) I was visibly shaken up and Jess invited me in to hear office to talk before the exam—when I declined, she said that if I needed to, I could leave the exam at any point and go see her or just take a walk. Yes, we often don’t want to be vulnerable, but that vulnerability was what I needed to push me through that exam, knowing I had the freedom to take a break if I needed to—and that I was supported. People supporting students with disabilities aren’t afraid to think outside the box—don’t be afraid to encourage them to!

My university provided letters of introduction to students for their instructors/professors upon request. These were meant to start the conversation between the student and the faculty member, and provide an official way to communicate which accommodations were in place for the student in a clear way, without divulging information about the student’s disability. I used these for most of my classes, and was grateful for their existence—it changed a really potentially awkward conversation to “Hi, I’m Kerri [I e-mailed you for the syllabus three weeks ago for my alternate format texts…], I have this letter of introduction from accessibility services outlining the accommodations I have.” If I felt it was necessary, I followed up a few days later, because I’m an open book, but it was rare anybody asked questions—they kind of can’t.

Common Accommodations

Access to Food/Drinks

If you have a medical condition that requires you to eat at regular times to avoid negative health effects, it can be arranged to allow you to have access to these items immediately (or in a timely fashion—as my friend Teigan pointed out, it may be hazardous in some classroom environments, and plans can be made for this).

Allergy/Sensitivity Awareness

If you have allergies to foods, latex, chemicals (etc.), sensitivities to fragrances, or asthma, your campus may have accommodations in place to assist you in mitigating these things. If they don’t, suggest that they start: signage can be placed on doors of classrooms students with allergies or sensitivities attend to inform people not to wear/use scented products in these areas; the same can be done for severe allergies to food or latex. My campus also had a bank of lockers that were peanut free; our accessibility resource centre also aimed to be an allergen (nut, fish and scent) free space.

Alternate Format Tests

Refer to the next point to see why the S is underlined!
While it may be obvious that a student with a visual impairment will most likely not be doing a standard written test, it may be less obvious that there are a variety of formats they can use to complete the same test as their peers—including large print, computerized versions [text-to-speech technology and typed responses], orally through use of a scribe… etc.
Students who have trouble writing by hand due to learning disabilities or neurological/neuromuscular disorders may also use a scribe, type responses, or use speech-to-text software (ie. Dragon) to communicate their knowledge. For students with other learning disabilities, swapping long-answer responses for short answer questions or multiple choice might help to organize information better and help to communicate knowledge more effectively.

This is just a small sampling of test formats that may be available—which is why it’s important to talk with the people on your campus to see what they can offer you. 

Alternate Format Texts

Far beyond the typical audiobook, alternate format texts can be both used to provide a different format for students with specific learning or perceptual needs, they can also be provided for students who struggle with turning pages, or cannot carry heavy textbooks. Alternate format texts can be digital, audio, or Braille; eText provides the advantage (in my opinion) of being portable using a tablet, and being searchable. As a student with a learning disability affecting my visual memory, it was recommended that I use audio books—I found that these books were too difficult to navigate—if I spaced out, I had a hard time finding where I’d been previously. Using the iPad, I set it up to highlight sentences as reading was occurring so I could find my place and easily scroll back if needed. With that said, some people might find audiobooks more friendly to their own disability: which is why options are important, and experimenting should be valued.
In Manitoba, Alternate Format Texts are handled by Manitoba Education—if resources were already produced for students with disabilities, on occasion I had access to them without purchasing the physical book; other times I needed to have a receipt for the book, or provide the book myself to have the eText created (students who wish to have audiobooks in Manitoba that are not already produced need to provide two copies of the book for production), so it’s important to find out your school’s needs early on in the term so that production can begin—your late request is not their problem.

In general, some provinces/states and a variety of programs may cover textbook costs for students with disabilities. It’s worth researching.

Assistive/Adaptive Technology

Computer access is commonly available for students with disabilities who need access to adaptive technology through the university’s accessibility services centre. These computers can offer print magnification, speech-to-text and text-to-speech programs (such as Kurzweil). An assistive technology specialist may be available on campus to help you explore which options may be relevant to your needs.

Extended Time (Tests)

Some students may need extended time on tests for a variety of reasons, including learning disabilities, ADHD, slow processing speed, or physical disabilities that affect writing speed. Extended time may be also provided based on circumstance (ie. people with diabetes receiving additional time to compensate in the event of a high or low blood sugar, or students with disabilities who need test time paused and restarted to take breaks to stretch/move or use the bathroom to ensure they are receiving a fair amount of writing time.

I had flexibility in adjusting my time accommodations—I started off with 125% (ie. received an hour and fifteen minutes for every hour my class had), but eventually adjusted to 150 to 175% for some classes, and 200% for others—it took some trial and error, but I was fortunately supported through this.

Interpreters

Students who are D/deaf and communicate through signed languages will require interpreters during lectures and tests to ensure prompts are communicated. (For the rest of us, remember to look at the person you are speaking to, NOT their interpreter!)

Lecture Recording

Using a tape-recorder or laptop to record lectures allows students with learning disabilities to return to lecture materials at their own pace. [I used Evernote to take notes and record at the same time. When I missed points, I glanced up and jotted the record-time into my notes to fill in later.]

Missed Lecture/Test Support

See note-taking next. If you have a chronic disease that may require you to miss class due to symptoms, medical appointments, etc., access to supports from the instructor/professor, as well as notes, can be crucial to being successful. Make arrangements BEFORE you need them! In the event of an unexpected circumstance  communicate with your instructors as soon as possible so they can help you catch up—being up-front, even without divulging too much information, helped me a lot when I got sick unexpectedly during two different terms. Meet with the instructor as soon as you are able so they can help you get back on track: most of them teach because they want you to learnlet them give you a chance. They can’t give you what you don’t ask for. Having a plan can also help you reschedule tests, extend deadlines, and help with group work—thanks to Rachel for these ones.

It’s also helpful to make friends in classes to share notes, study with, and, you know, have the occasional post-class eye-roll with.

Note-Taking

Many campuses enlist volunteer note takers for students who need note-taking support. This can be fantastic at best and horrendously unreliable at worst (or sometimes nobody volunteers—been there). Make sure you have a back-up plan, and if at all possible, try to take your own notes and use the volunteer’s notes to supplement. 

Priority Registration 

To increase the ability that students can attend class, students with some disabilities can register early for courses to avoid landing in sections that don’t jive with their symptom patterns or needs for accessible transportation. [Thanks to Teigan for reminding me of this one!]

Separate/Private Space for Assessment

Alongside alternate format tests, students who need it due to test anxiety, learning and attention issues, or medical needs, should be provided the opportunity to use alternate space for tests. Sometimes this means having students with similar testing needs writing in a room together, but among a smaller group (ie. 3-5 students who need a less distracting environment and also have an hour and a half to write a test); others it means having a completely separate space (with access to assistive technology if needed) to write in. I did much better with private space. This can also be implemented for certain in-class assessments [ie. lab quizzes] with adequate planning.

Seating accommodations can also be covered for tests (see next); additionally, my friend Riki has just shared that she now has a test accommodation to have dimmer lighting in her testing space (to quote: “because I like never really even thought that could be a thing but it is! And it’s fantastic.”)

Seating Accommodations

Students who need to should be able to pre-select seating for lectures. This can be for a variety of reasons, including vision, hearing and attention needs, but also for other reasons. When I was selecting seating, I would choose a front row seat, but by the door if possible so that if I was fidgety, I could slip out easily without disturbing half the room. Someone I know experiences anxiety when people are behind her, so she prefers to sit at the back. Students using wheelchairs will need a desk with removable seating; students with chronic pain may require different sorts of chairs to comfortably participate in class. Seeing the classroom and having a seat picked out and marked as reserved ahead of time can alleviate a lot of stress—plus it can be a great deal of fun when someone sits down at your assigned seat and is kind of being all “I wish I had assigned seating,” [maybe he had a need, maybe not…] it is kind of satisfying to be able to walk up and be all “Hi, I’m sorry, I need you to move” after someone is acting all cocky…

Study Space 

At least before I made a bunch of friends, I found the Accessibility Resource Centre a great place to study (then all my new friends distracted me, but oh well). They also offered testing rooms as study spaces if they weren’t booked—ask around, especially if you’re on a crowded campus like I was. This may be less of a problem for people who live on campus (or in the US where campuses are often gigantic), but for commuters on small campuses like mine, study space is at a premium.

Tutoring/Mentoring

Whether directly through their university or through grants, some students have received funding to receive tutoring. At the local community college, someone I know says he has tutor coverage up to a certain number of hours per term, and then he has to pay. Investigate the options. If you’re new to post-secondary, I would also ask around with the student support people if you are thinking a mentor might be helpful to you—other students with disabilities themselves are a great wealth of knowledge—and fun. 

Peer Support!

While not a formal accommodation, if your campus has an accessibility centre… USE IT! My campus had a few tables in a room and a computer bank for students with disabilities to use—I also met a ton of friends here, and had some of the best times I had at university in this room (…Shotput on the floor, much? Bringing cupcakes back from a cupcake run for the Accessibility Services staff, puppy playtime when my friend Gerry would let his service dog, Marcus, off his harness, seeing a business prof do a headstand—all of that and more. Sometimes disability perks happen, y’all!)

So yes, there are some unexpected bonuses—at least in my experience… but that could be because I am slightly a troublemaker? In a good way.

Make it happen.

Remember Riki up there—even if you don’t think it could be an accommodation thing, it possibly/most likely IS A THING. Don’t let intimidation or nervousness stop you—you can always quit accommodations if you really hate it (I don’t know why you would, but hey), but you’ll never know if you don’t TRY.

Have stories to share about being a student with a disability? Have tips to share that I’ve missed? [There are probably seventeen thousand.] Share ‘em below [or shoot me an e-mail if you want to guest post or just connect off the record!]

modifying the process, not the outcome: part two.

I am a mess at making series properly. I’ll provide background, but for full context…
Related posts:
Modify the process, not the outcome: Assessment results. . . and hope | March 23, 2013
Modifying the process: Part one | April 3, 2013 
Beyond expectations | September 9, 2013
—–

This one time, I failed anatomy. You know how many people fail anatomy? Lots. You know how many medical students fail anatomy? Lots. As I discovered after googling “failed anatomy”. So, after that I wasn’t too fazed by my first F in university. I mean, it’s anatomy, I didn’t really even expect to come close to passing the first time, it was like the experience round.

Except then, this other time, I failed anatomy again (and social psych, the only other class I was in at the time), and I was not cool with that at all.

Then I was diagnosed with learning and attention issues, and was handed a report that literally says, in part, that I am “not suitable for visual learning” and “therefore, finding ways to have information presented through other means may be [of considerable help].” and to “[…] be mindful that subjects that require an abundant amount of visual learning, such as understanding graphs, charts, and diagrams may be a challenge […]” (Wang, 2013).

Key word there is understanding graphs, charts, and diagrams. That says nothing of the abundance of memorization and application of [memorized] knowledge required to pass Human Anatomy. Yes, a lot of people struggle with these things—anatomy is by no means an easy course for most people (there are some people who are wizards, however, and I cannot explain them). Except not only was it simply extremely difficult for me, I then learned after two terms of extreme frustration that I am pretty much not even wired to do it—especially, at least, not in the format they were providing.

 help me if you can, it’s just that this is not the way i’m wired so could you please, help me understand…

the outsider, a perfect circle

I took this knowledge alongside my recent registration with Accessibility Services to chat with Dave, the Department Chair of Kinesiology. At the time, program requirements for my degree kept changing, so I made a few swap requests which he took to the departmental review committee for approval—two of the requests were approved. The swap of anatomy to physiology, though, was not, as “the department feels it’s important for all of our grads to have human anatomy”. I don’t disagree, but with documentation like the above, it sucked to hear. I had a meeting scheduled with Dave to follow the e-mails, and when I asked if we needed to keep the meeting, the Associate Dean of Kinesiology, Glen, replied, “I think we should still meet to discuss how you are going to handle the Human Anatomy requirement.”

Pause right here to note that Glen has a PhD in Human Anatomy, 30+ years of teaching experience, and a reputation for being awesome. So I was kind of like “Okay, see you Monday.”

I’m pretty sure this was the day he said for the first time “We’ll get you through anatomy, whether I have to help you through, or drag you through.” Yes, dragging apparently can be a thing. I was expecting . . . not nearly as much as he had worked out. I left the meeting with him saying, “Let’s get you through this and get you out of here.”

This was September. I started anatomy in January, for the first time with accommodations (and my iPad).

By three weeks in, I was meeting with Glen once or twice a week. He would quiz me, attempt to figure out how to make things stick in my brain. We’d go sit with a model in the athletic therapy lab, or in the anatomy lab, or around my iPad and binder of notes from the instructor. Beyond this, I was making anatomy a full time job (on top of two other classes and a part-time job, and a contract project with the Asthma Society). A week before the midterm, week 5, I texted him this picture:

Yes, that’s a 3/10 there. 30%. Despite everything we were throwing at this, well, it sucks when your best simply isn’t good enough. I met with Glen the next day—we intended to meet in the open lab session to study, but given that lab quiz result a mere three days before the exam, we took a detour and took over one of the kinesiology instructor’s offices instead.

“Well, I told you that we’d get you through this, whether I had to help you or drag you,” (yes, this was probably more dragging than anticipated) “I know you’re working hard. What’s not working? What can we do to get you through this?”

My brain isn’t working, that’s what. “If I knew, I wouldn’t be almost-failing again.”

Back to the drawing board. We talked about the lab quizzes—the big issue in previous terms, and becoming the (an) issue in this one. We’d already accommodated those by having me do the lab quizzes before lab with the lab demo before my weekly labs so that the time component (quickness required in having the models move by me too fast). Since this was my only form of assessment thus far, it was the one that needed to be addressed. We also covered what, exactly, the struggle was for me outside of processing speed: visual memory. It was just too much for me to be able to hold that information in my head, and manipulate it to get the correct answer without any sort of visual guide to work with. I tried to explain more about this, but three days before the exam I was just really stressing and emotional (I was thankful that the office we borrowed contained Kleenex). Fortunately, to an extent, he got it; he said again that he knew I was working hard, but that things just weren’t working. After three attempts, I knew that I knew more than I was able to demonstrate. Sometimes lab questions involved the model being partly covered and flipped in another direction, and being asked “Does this bone belong to the left or right side of the body?” So not only would I have to figure out the bone from it being partly covered and oriented bizarrely, I had to flip it around in my head and identify the side or structure in question.

He rolled with it. He first contemplated with me whether oral quizzes would be better—except, writing’s not the problem (he’s seen this blog—he knows that now :]). Well, if writing’s not the problem, then, it was decided we’d eliminate the lab quiz aspect altogether, and then assess me in a way that worked with that. He took the reigns and simply pulled me from lab quizzes—the grades thus far were thrown out. Instead, I submitted weekly 1-2 page papers on an aspect we covered in anatomy that week to cover that portion of my grade. We also agreed that I would be allowed to sign out the lab models to work more with them at home, because by my 4:30-6:30 lab time, with all the potential chaos on lab, I simply wasn’t able to absorb enough in that allotted time to make a difference.

Then, of course, I was brought back to earth with, “This doesn’t help that you have a midterm on Friday.”
“Yeah, I have one tomorrow too that I haven’t even started studying for, since I’ve been trying to keep my head above water in anatomy.”

With that he told me he was deferring my midterm and to “get the hell out of lab and go study”, and he would talk to my instructor about the new plan of action. He met me briefly outside the lab after I’d gotten my stuff to discuss when I’d write the midterm (since the next week was Reading Week), but since I had test accommodations with Accessibility Services, I didn’t need anybody to invigilate so I got the “Oh, you can write whenever you want!” response again (like I’d gotten in the Fall when my instructor approved a midterm deferral in Sport in the Ancient World because once-upon-a-time-my-uterus-tried-to kill-me-except-it-failed). We also briefly discussed that we’d have to figure out how we were handling the final lab exam, but we’d deal with that after the midterm. Tutoring was also basically off the table (which we hadn’t implemented yet aside from working with Glen), as were my study sessions with Glen beyond if I had specific questions. In reality, if the sessions with him weren’t working, I think we’d be hard-pressed to find many tutors who could help. As much as this man knows anatomy, he’s an educator through-and-through in my perspective :).

I wrote the midterm a week after the rest of my class, on the Thursday of Reading Week (since I had a project deadline the Sunday of Reading Week with the Asthma Society). I got my test mark back a couple weeks later—53%.

I was all

My instructor was all “How do you feel about that?” “AWESOME. I PASSED.”

These people really didn’t understand I was serious when I said “I just want a D.”

Glen, however, wasn’t quite as enthusiastic as I was (I mean, I maybe was overzealously excited about my bare-pass, but SO?): 

I have looked at you midterm exam and it is unfortunate to see that you were not able to score better (42/80). […]
 
You had difficulty with almost every part of the exam except for the short answer questions.  You had the most difficultly with the Charts section which gave you one or two clues from which you had to determine the anatomical structure being asked for.  Similarly you had difficulty with the diagram section which I would have thought you have done well with given the drawing you were doing on your iPad.

[This] exam is challenging in that it calls for information that is gained by memorization, visualization, conceptualization and functionality.  I think you did well in the  functionality portion of the exam (short answers) but had the most trouble with the visualization aspect (relation of now structure to the other, charts based on one or two clues, diagrams).
 
Not sure where we go from here.  Do you have any suggestions?  Who in disability services are you working with?
[Note: The charts are torture.]

Of course, I was like “WHAT I DID AWESOME” (there’s no punctuation in my brain), and told him that. Except at this point, we not only moved forward with the alternative assessment in labs, we got Accessibility Services in on the shenanigans once more, and Jess had a lot of good suggestions on how we could work with the lab component for the final. For the finals, we eventually decided that we’d do a modified format to both the final written [lecture] and lab [bellringer] exams (more on that shortly).

I kept pushing through—I had, fortunately, also made two friends in the course, helpful in working through the labs with and teaching each other, and also having people to study with outside of labs (…”The articulating end of the radius is conCAVE because that’s where the radial bear lives!” Merry: It clearly worked!). I studied my ass off, with Merry and Ashley, and by myself: with a pile of pencil crayons and coloured pens, many killed trees (sorry trees, blame anatomy), Quizlet and other online flashcards, and $50+ worth of iPad apps to try to get smart things into my brain one last time. I asked initially if there was a way I could get into the lab to use the models more often (since we had so few open lab sessions in a term and were only really allowed to use models during our lab times) but with limited availability of people to provide supervision, I ended up getting permission to take models home. I’d like to say it helped, but I’m also realistic about the amount of information from visual input my brain actually is useful for.

With a now 175% time accommodation for tests, I asked if I could write one exam Monday [two days before the day my class was scheduled to write] and one on Wednesday [the same day as the rest of the class], as otherwise I’d be writing for like 9 hours on a single day, which all parties agreed to—I was no longer writing the same exams as my class, so this was no longer an issue. I did my lab exam in a way similar to the class, except through flash cards and without a per-question time limit, and formatted in multiple choice to reduce the number of variables in front of me (the traditional bellringer allows students one minute per station with an open-ended question and most times a sticker on the model identifying the structure in question. The model can’t be touched). For the lecture exam, I was provided a multiple choice/fill-in-the-blank/true-false exam created by Glen and based on the class exam, and allowed a very simple, un-detailed, un-labelled diagram to use simply to orient myself to the questions.

(I spent much of the night before my final lab exam doing this, above—I have no clue if it helped, though!)

The lecture exam went okay, or so I thought, except for the amount of lower-body questions (what we had covered on the midterm) that I hadn’t realized were going to be on there. The lab exam? I was freaking out even prior to it starting, because of my difficulty on the lecture exam. The epitome of all this? If I failed anatomy, I wouldn’t graduate in June. From Facebook, Jess in accessibility services knew how hard I’d been working, and told me so while I was waiting—she asked me how I was doing and when I almost broke down, she asked if I wanted to go talk in her office. I basically knew if I did this, I’d lose it and declined, so she said to come see her or go take a walk during the exam if I needed to. Of course, the exam was kind of an emotional disaster—I have never cried during an exam before, but this was the one. I spent some time staring at the ceiling and eating a Rice Krispie square to calm myself down; I knew I could leave and take a break, but I also knew if I did, I wouldn’t want to go back in, so I kept going. 

I finished the exam, and went to see Jess, who got the whole anatomy-related breakdown (and was awesome about it, because she’s always awesome), and assured me that if I didn’t pass we’d figure things out, and regardless I’d worked really hard. I went out for lunch and then as I was waiting for the bus, got a text from Glen saying “Check your e-mail – good news :)”. 

Turns out, four minutes was too long for him to wait for a reply to his e-mail.

 

Anatomy = PASSED.

A photo posted by kerri (@kerriontheprairies) onApr 4, 2014 at 3:58pm PDT

77% on the bell ringer? Yeah, my brain just about exploded because that’s the thing I’ve failed hardcore the last two times.

Final grade? C+.

Yes, I had some pretty awesome people on my team. Some very awesome people. But, I didn’t work any less hard than I worked other terms: in fact, I probably worked harder, but also more effectively. The style of my assessment was heavily modified, of course, but in no way was I handed this grade: after the exam, I texted Glen to thank him for all of the work and hours he invested in me, he replied “No thanks required, you earned it” (thanks were still totally required); he told me the same when I took him cupcakes one day in May to [attempt to!] thank him. Not only did I potentially work harder than many of my classmates (who possibly received better grades), I worked that much harder for the second time (the first time through was the first time through, really—many people have two attempts at anatomy).

Accommodations don’t give an advantage—they level the playing field. I know this, and the people on my team know this. I just hope that other people realize it, too. Sometimes, students would ask about certain things, accommodations I had, and say “I wish I had that”—I wish I could use the instructor’s notes/have a volunteer note-taker; I wish I could write tests in a private space; I wish I had electronic textbooks. An honest response, yes, but one that is not well thought out: I wish that I could spend the normal amount of time reading a chapter and taking notes, not one or the other; I wish I had a GPA higher than 2.8; I wish I knew the right technology to access earlier.

Mostly, I wish I knew earlier what I know now. That I have a learning disability and ADHD, that it’s a part of who I am, and that I can work with this.

Maybe it took a bit more time, but I accomplished what I set out to accomplish—and that’s what is important: learning and attention issues or not.

My cousin Dean and I—I still got to graduate 24 hours before him.

Photo credit to Linda Mikulik.

ADHD/LD and me: executive functioning.

Yesterday’s post covered the basics of my world with ADHD and a learning disability. As I wrote about briefly, a big theme in the ADHD/LD sphere is that of executive functioning. I know, I know, it conjures up images of fancy businesspeople, specifically at a cocktail function. (No? Just me?)

So, what is executive functioning? Why does it matter? I’ll let the experts—and a sixth-grader named Josh—handle that in infographic form, made by the awesome folks at the National Centre for Learning Disabilities:

[View infographic here since the link broke]

(Source)

Nope, I’m not a sixth grader, but I struggle with most of these areas.

Organization: I was the person who never had a pencil or pen in school (fortunately, my friends—especially my friend Sam—were excellent with dealing with this annoying trait of mine…). Even in university, I usually had to get lucky on this one! I miss buses because I can’t find my keys, or I miscalculate how long it will take me to get ready before getting to the bus. A later pane has Josh unable to remember the correct place settings when setting the table at dinner—at twenty-three, my mom is still telling me to switch the position of the forks and knives more often than not! In a later frame yet, Josh forgets to put his finished homework in his backpack—yup, just because it’s important, doesn’t mean it’s making it where it needs to go: been there.

Working Memory: This is why it’s important for me to write everything down somehow. Whether it’s the post-it notes of chores, or making notes of what I’m reading… say it with me: “If it stays in your head, it gets lost.” (…Thanks for that mantra, Jay!). Sometimes, let’s be honest here—most of the time, I just simply didn’t do a lot of readings in university. Others, I would spend a ton of time doing the reading, and it wasn’t much different than when I actually did it. “I don’t know… I wasn’t thinking of those words when I read last night. I’m so overwhelmed.” is how I felt—and, hoping the instructor didn’t call me out for an answer: yes, I raised my hand when you asked who did the reading, no I didn’t lie—I did it, but, I can’t get the information you want in cohesive thoughts quickly enough to not look dumb or like I didn’t do the reading. “His heart sinks thinking about all the steps answering this question takes.

Self-Monitoring/Impulse Control: In the big picture, I appear okay with impulse control. Sometimes I catch myself talking way too much and apologize. But let’s go back to prior to the infographic when I noted that I took a 30 minute deviation looking for t-shirts. That’s because I impulsively read an e-mail instead of selectively ignoring it until I was done this task, and then allowed it to take priority over writing. Now, once again—how much is me, how much is ADHD? How much is that I desired to do that versus this, and how much of that was pure choice vs. choice with a side of impulsivity driven by ADHD? For instance, if I want to change my behaviour on a bigger scale (make it habit, perhaps), will it take me more sustained effort to change that behaviour versus someone with a “typical” balance of neurotransmitters (aka, a non-ADHDer!); how much of the success of this desire to change is derived of ADHD, and how much, more simply, of pure personality? Am I less likely to, for instance, adhere to an exercise routine because of my ADHD, or purely because of personality, than someone without ADHD? I don’t have answers for that, but for more on self-regulation theory and its applications, check out this article.

Cognitive Flexibility(/Working Memory): Here’s a parallel: Josh in the infographic struggles with keeping his thoughts organized in a soccer game… and kicks the ball into the wrong goal. This is 100% me. Interestingly, I coach now, and keeping the rules to the game straight is still very difficult for me—as is quickly revamping a plan without having somebody to talk it through with. This also translates into simply making/keeping plans and obligations. The combo of cognitive flexibility and working memory are probably also the difference between finishing a project early (be it a paper, volunteer research, or editing a video) because I remember it at other times and not simply the days before a due date! (I could be interpreting this wrong, but, that’s my take on it.)

Emotional Control: Little things -> big reaction? Sometimes. I still struggle to express anger or frustration in any other way than bursting into tears—or being on the verge of doing so. And, when so many basic things can be the source of my frustration, this is just another thing that is very difficult to deal with sometimes, because sometimes the small reminders feel like personal attacks—even if they aren’t at all, it’s just that when I forget my keys for the thousandth time or don’t have bus fare, I’m already frustrated enough at myself—so any outside digs are simply more than I need in a given moment.

Task Initiation: Going hand-in-hand with organization, switching from one task to another or prioritizing, can be extremely difficult. Why am I writing a blog post instead when I have a task I was supposed to have submitted yesterday is incomplete? Why did I not do any preparation for coaching Goalball on Sunday until the night before? Because it is difficult for me to initiate tasks that require a lot of mental organization or “figuring out” beforehand—even if they are things I really want to do. Because “I don’t even know where to start.” is 100% accurate. Which, of course, goes along with the next point…

Planning + Setting Priorities: I remember one occasion specifically where I started writing the bulk of my final paper for Sport in the Ancient World two days before it was due. I went to bed at 6:45 AM. I’d done the research, or at least a lot of it, but the writing of the paper itself went on the back-burner. I’m legitimately surprised that I had as few all-nighters as I did in university. Not being able to figure out the structure of a paper isn’t a mystery to me either—a combination of poor planning and task initiation lead me to having no idea how to write a midterm paper for Sport Ethics a couple years ago—I couldn’t figure out how to structure it, and it was due the next day. Had I planned better, I’d have been able to get help from the prof; instead, I dropped the course—a common thread in my university experience, and probably much to do with difficulty in terms of cognitive flexibility and planning/prioritization!  Refer also to task initiation.

Those are just a few ways executive functioning issues affect my life. As a young adult who is supposed to be gaining more and more responsibility, this is why my ADHD/LD diagnosis is key: in understanding myself and how I interact with my world, I am able to be more patient and self-accepting when I do mess up. It will happen, so best to prepare for it—and accept it!—through understanding the impacts of my quirky brain on my interaction with the world.

…The problem, of course, is that I think I’ve been too self-accepting: as I alluded to yesterday, my room is still a disaster :].