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A mySMAteam Member asked a question 💭

I need help such as unpacking my supplies, re-packing them, opening doors and such. If you went to college, what help did you receive from the school? Did you have to bring your own sort of AID? What was College life like in terms of in-class help from your professors and peers?

(For reference I reside in Texas).

March 9
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A mySMAteam Member

This is incredibly insightful! Thank you for your response :)

March 18
A mySMAteam Member

So...i am GenX and went to college in the late 90s ...am hoping that things have changed for the better since my day, but you will be fine. Every college has a 'nurses office' (probably called something else now)...and some member of that staff should be the one to address your concerns to. It is part of their job to assist disabled students on campus .

When i went to college , i carried a notebook and pen, but the rest of my books i kept in the back of my wheelchair in a large bag. If needed for a class, i'd simply politely ask whomever the poor soul was who sat behind me to reach the book out of the back of the chair and ask same person to put it back in the chair at end of the class. Yes...this is a bit embarrassing and awkward ...but it is also a great ice breaker for making new friends . It was especially funny on days i took guitar lessons as my guitar jutted out the back of the chair and between that and all the books, i practically did a wheely every-time i hit a bump. i carried the pen and a notebook as in most cases , that was all that was needed . Be sure to look into new tech...they have things that take notes for you nowadays ...not like the stone age when i went to college .

Two of the most difficult things will encounter are doors and elevators. An elevator stick will come in handy as students rarely use the elevators to ride with them. https://www.instructables.com/The-Incredible-Am... Doors are an issue. Unless things have radically changed, while main buildings are likely to have a power door, the classrooms will not professors rarely prop the doors open. i would always try to arrive early to my classes by like ten minutes if possible to ask a student to hold the door open.

Most college tables in classes are attached to the classroom chairs. You may want to see if it is possible to visit your classroom ahead of time, especially if it is in a hall or theater. i didn't want to request special tables so i could fit in with the students . If you do, i guarantee that the professor, trying to be nice, will place that table right up in the front of the classroom practically ontop of the chalkboard in front of the class. Instead , i would turn the chair with table around backwards using my footrest and drive such that the table was facing me straddling the legs of the chair.

To get the full college experience , be sure to join clubs and activities wherever possible. Honestly job interviews asked more about those than bothering to look at grades.

The Incredible Amazing Stick! for Elevator Buttons
The Incredible Amazing Stick! for Elevator Buttons
March 18 (edited)
mySMAteam

What kind of help and accommodations are available for college students with SMA who need assistance with daily tasks?

Preparing for college with extensive support needs requires early planning. A mySMAteam member who successfully completed college shared their approach to managing support needs.

Building Your Support Show Full Answer

What kind of help and accommodations are available for college students with SMA who need assistance with daily tasks?

Preparing for college with extensive support needs requires early planning. A mySMAteam member who successfully completed college shared their approach to managing support needs.

Building Your Support System:

Start planning during senior year by identifying who can help you. Options include:
- Family members who can assist during emergencies
- Medical assistants through agencies available in most areas
- Programs like Public Partnerships that help facilitate hiring and funding caretakers, including friends and family
- Roommates and friends who understand your needs

Finding the Right Roommate:

Connect with potential roommates early through your school's matching system. Being transparent about what living with you will be like helps create a smooth arrangement. One member emphasized that being social and making friends quickly was key to gaining more independence, as friends could assist at times.

Practical Planning:

Get your exact dorm assignment as soon as possible to plan equipment setup and what to bring. Visualize a typical day to ensure you've covered all your needs. Consider the distance between campus and home for emergency situations while maintaining enough independence. In-Class and Campus Support:

While specific accommodations weren't detailed in member experiences, schools typically can provide assistive devices and accessibility features. The key is communicating your needs early to the disability services office.

One member noted that coordinating medical assistants through local agencies covered most bases initially, but building friendships provided the independence needed for a full college experience. Money can also be an incentive for friends to help through formal caretaker programs.

The overall message from members who've been through this: it's absolutely possible with planning and the right support network in place.

March 9

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