Experiences and Advice From a Student Navigating College With SMA

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by Halsey Blocher |

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A banner for Halsey's column, which shows an open book among ferns, along with some closed books and a pair of glasses.

Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few of the many options to be considered.

After exploring volunteer work and other activities at the local disability center, I began searching for a platform where I could write about life with SMA. That search led me to SMA News Today, and it flourished beyond this column into a fulfilling career in management at BioNews, the publisher of this site.

Jasmine Ramos, a friend from the Virtual Cure SMA Conference, decided the college path was right for her. She’s currently striving toward an associate’s degree in social services before she continues with a bachelor’s in social work.

Today, Jasmine is sharing some wisdom about college. I thoroughly enjoyed learning about her experience during a recent email exchange, and I hope that you also gain something from it.

Excerpts follow:

HB: Life with SMA tends to require a fair amount of accommodation and modification to make everyday situations navigable. What accommodations have you needed to attend college, and how did you obtain them?

JR: When I first applied to the college I currently attend, I knew for sure I was going to need accommodations, I just wasn’t sure exactly which ones were needed for my particular situation. However, I called the disability office and made an appointment with the disability coordinator who has been working with me ever since. Luckily, I had a copy of my individualized education plan (IEP) from high school, so she was able to get an idea of what I needed. After reviewing my IEP, we had a discussion and came up with our own list of accommodations.

The accommodations that were eventually implemented were easy and didn’t really cost the school anything extra. I needed an aide to be in classes with me because of my trach and ventilator, but it was also determined that I needed a note taker, so having my personal aide with me in classes to do this is easier than asking random classmates. Other accommodations include adaptive furniture (e.g., adjustable desk), breaks, a calculator for math classes, extensions on homework assignments, testing accommodations, digital documents, and recorded lectures.

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It’s not uncommon for people with SMA and other disabilities to be spoken to in an infantilizing manner. Have you encountered this issue with your professors or peers? What do you do to help correct that behavior?

I have experienced this a few times, but not as much as other places. A lot of people were actually scared to talk to me or just avoided me altogether. Whenever someone did talk to me like a baby, I don’t think I actually corrected the behavior, I just responded maturely and a bit sarcastically, hehe.

During the COVID-19 pandemic, many college students had to adjust to a new learning style. What has the transition to online classes been like for you? Has it been easier or harder for you to take classes this way?

At first, this transition was really hard for me because I was never a fan of online classes, so I purposely applied to attend classes on campus. It took quite a while for me to adjust, but then I eventually got used to it and actually find it to be easier. The Zoom classes kind of help simulate the on-campus learning experience, so I still get to see people and have a visual of everything I’m learning. I also save a ton of time traveling to and from school, which can be a total nightmare with paratransit. The other pro of doing virtual classes is I have perfect attendance!

Tell me a bit about your experience with working during college. How do you balance your job, school work, and SMA?

Some days are extremely challenging and overwhelming. I usually try to manage my tasks according to importance and use my energy wisely. However, sometimes I’m too exhausted or overwhelmed, so I communicate with either my professor or employer to let them know that I need an extension on whatever I’m working on. They’re always accommodating and completely understanding.

If you could change anything about your college journey so far, what would it be?

I honestly don’t think I would change anything.

What advice would you like to give people with SMA who are in college or considering pursuing a degree?

Wherever you are in your journey, do not give up. It’s not always going to be easy, and you may shed a few tears along the way, but it is all worth it. There is nothing more empowering than having a professional title by your name or a certificate acknowledging your accomplishment.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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