Sophomore Year

My second year of college is officially underway. I am still living on campus in what is considered upperclassmen dorms. I made the decision to stay on campus in case a new health concern arose, as well as to remain in a relatively quiet environment. I have to admit, I do semi-regret the decision. Many of my friends live in nearby apartment complexes and I miss not seeing them as much. However, my single room is quiet and peaceful all of the time, so I am definitely not complaining about my living conditions themselves, just not waking up to my buddies in the morning. The new kids in town, freshmen, have never been so obvious, walking around huddled together like little ducklings with their gold lanyards swinging back and forth. They even managed to start a fire outside one of the dorms last week (WHY?!).

Surprise: I changed my major from Elementary and Special Education to Family and Human Development with a focus in Child Life. I thought that I wanted to teach within hospitals, but, I no longer see myself leading a classroom full of students anymore. My teacher’s college courses have made me realize that while I do find education fascinating, I want to know why children think the way they think, how their families function, and what outside of the classroom makes them the student that they have become. Best explained in one of my McGraw Hill textbooks, “Child life specialists work with children and their families when the child needs to be hospitalized. They monitor the child’s activities, seek to reduce the child’s stress, and help the child to cope and to enjoy the hospital experience as much as possible. Child life specialists may provide parent education and develop individualized treatment plans based on an assessment of the child’s development, temperament, medical plan, and available social supports.” Do I think that I would have learned about or been interested in this career had I not spent so much time in the hospital? Probably not. Do I think that this career best suits me? Absolutely.

Announcement: I also have a job on campus this year! I am the Social Media Chair for an organization that focuses on community service, community outreach, social entrepreneurship, innovation, and student-driven social change. We work as connectors to other organizations and resources on campus as well. The job keeps me busy, which I like. I was weary about disclosing my medical conditions at first, but then I noticed that a co-worker was wearing a medical alert bracelet (for diabetes), and we bonded over shared stories and experiences of being the “sick kid” at school. Another co-worker missed a day with a massive migraine, and we bonded over headache struggles. I wondered if I should disclose my various conditions to the faculty advisor, but waited a few weeks until doing so. She was very supportive, and even shared that her brother-in-law had passed away from GBM. It wasn’t one of those cancer comparison stories where a person tells you about someone they knew with the same condition who died because they were so uncomfortable that they didn’t know what else to say. Instead, it was a way of her reaching out and saying hey, I know that this is hard, and I will do whatever I have to do to help you. I really appreciated that gesture, as well as how co-workers have checked in with me during events to see if the noise level is too loud, or to ask if I need to take a quiet break somewhere. Working with this team of tremendously hard working, dedicated, and driven students has been an incredible experience so far, and I can’t wait to see what the rest of the year brings for our organization.

Exercise plan: I’ve been really into swimming since I returned from First Descents this summer, but now that I’m back on campus I haven’t been getting into the pool as much. I’ve been going to the gym with one of the co-workers that I mentioned above, and I can’t tell you enough how helpful it is to have someone else there with you to cheer you on. I also signed up for a yoga class this fall, because why not? I had to get a doctor’s note to prove to the instructor that I wouldn’t pass out and die in the middle of class once I disclosed my medical history to him. I’m not sure that the note was something that I legally had to provide for him, but it wasn’t too difficult to acquire, so I did it anyways. To my surprise, I was actually pretty dizzy for most of the first class, 99.9% likely due to all of the head movement. The class will carve out a set schedule for exercise during my week, as well as strengthen my back.

Not a surprise: Once again, there was an awkward situation when it came to setting up disability accommodations with a professor. Last semester’s incident was horrendous, but this situation was more of an kind-hearted accident. I had reminded a professor to read off the statement provided by the disability resource center that requests another student in the class to scribe and submit their notes to the DRC for $25 per credit hour – the student essentially gets paid to submit a copy of their notes, something that they are already doing for the class anyways. He then added an extra slide to the lesson’s PowerPoint and made the announcement mid-class where he had inserted the slide so that he wouldn’t forget. Just as class ended, he looked at me, asked if he had asked about a notetaker, re-asked the class, and then asked me if he did the announcement correctly. This professor was very nice about it all and meant very well, he just didn’t realize that he had singled me out. The purpose of announcing that a notetaker is needed is to provide an accommodation for an anonymous student in enrolled in the course, not to identify them to the entire class. This accommodation serves as a backup plan for days when I have a seizure, or when my hand/arm is too weak/heavy to take notes. Having an extra copy of notes to refer to also helps in case I wasn’t able to write down a point fast enough. As I move farther and farther away from my surgery, I find myself feeling the need to justify any accommodation or “special treatment” that I receive more and more, even though that I don’t have to. This feelings stems from the notion that people who don’t look “sick” don’t need help. But, we still do.

Check back here in another week for a TWO year post-cranio reflection.

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SPE 222 – Orientation to Education of the Exceptional Child

SPE 222 is one of two courses that I am taking towards my elementary and special education degree this semester. SPE 222 is by far my favorite course of the year, and it’s just getting started. I connect with the class on a very personal level. I walk in a little bit nervous, and I’m not sure why, because I am so extremely public about my medical history, but I have continued to leave feeling all warm and fuzzy inside. We learn about disabilities, and as someone with a “disability” of sorts, I feel like my classmates are learning about me. The course “provides an overview of the education of children with special educational needs from birth through age 21, and is intended to provide background to allow for the meaningful inclusion of diverse learners in educational environments.”

In my mind, not only am I learning about my future students, but also about the system I would have navigated if I had had my brain surgery earlier than my senior year of high school. If my crantiotomy was in elementary or middle school, I would definitely have more cognitive delays. The resource room I noticed in passing would have been my homeroom. I would have needed a 504 plan. A 504 plan refers to section 504 of the Rehabilitation Act and the Americans with Disabilities Act, and explains the modifications and accommodations needed for students to have an opportunity perform at the same level as their peers. In a sense, I have a 504 plan through my accommodations via the Disability Resource Room here on campus. I have most of my textbooks available via audio for extra enforcement because too much reading leads to unusual fatigue that I had not experienced before surgery. Blame it on the gaping hole in my left insula (aka the speech and language hub).

Maybe my grades would have been based on alternate achievement standards when I was younger if my speech and language capabilities had taken a bigger hit. Maybe I would have needed alternate assessments, or supplementary aids and services. A direct quote from the textbook states that those with “traumatic brain injury are most likely to be educated in a hospital or their home (U.S. Department of Education, 2011).” I know that the traumatic brain injury the text is referring to is most likely geared towards car accidents and not brain tumors, but the information is still relevant. After all, any disruption or subtraction of gray matter is a brain injury. We’re covering students with traumatic brain injuries in Chapter 13, 10 chapters from now, and I will most likely write a review of the chapter on here afterwards.

I’ve noticed a similiarity between neuropsychology testing and IEP (Individualized Education Plan) meetings. Major components of IEP meetings include: Evaluating current levels of performance, sharing thoughts about resources, priorities, and concerns, and sharing visions and expectations for the student. Meetings also involve considering student goals, placement, and services as well as determining modifications for assessments. A neuropsychology evaluation starts with a 6-8 hour evaluation and then moves on to discussing results, and determining strengths and weaknesses. Patients are also given advice on how to improve their functioning, as well as what accommodations they might need when returning to work, school, etc. Then, like how IEP meetings are revisited, patients visit six months, a year, etc. to retest where they are at, the progress they have made, etc. and set new goals. 

Dear current and future educators

Please do not breach your student’s privacy and loudly announce that they are “the one with epilepsy” in the middle of a lecture hall full of 199 other students. Also avoid stating that you are “sure that someone in a room full of 200 people will know what to do” if the student has a seizure without taking the time to ask about precautionary measures you yourself could take. Do not proceed to ask how often the student has seizures, once again loudly in the middle of the lecture hall, as well as assume that it is ok to announce a student’s affiliation with the Disability Resource Center. Such acts are highly offensive, inconsiderate, and unprofessional. 

Sincerely,

A fuming student

Disability Resource Center

Today I went to a meeting at the Disability Resource Center on campus. I felt at home amongst all of the other students with visible and invisible illnesses. Half of the people there “looked” just like me – no visible cues to distinguish us from the rest of the college students. Although we looked “the same” as everyone else, there was an unspoken understanding that we all weren’t the same as the other students here on campus.

I learned that students aren’t required to tell their teachers the reason for their registration with the disability resource center…whoops! I sent an email to all of my professors explaining my accommodations and why I needed them last week. I didn’t realize that professors are obligated to follow confidentiality agreements and whatnot about students who are registered with the disability resource center. I guess I’ll just have to wait and see if the extra email information works for or against me.

There was an organizations and club fair today where I signed up for the neuroscience society. Yes, that’s a real thing here. They discuss TED talks and even have neurologists come in as guest speakers! Eerily, their first meeting of the year is the same day and my one year cranioversary. I signed up for the ultimate frisbee team as well as community service related groups as well.

School starts tomorrow morning…here I go.