MDF Magazine Issue 72 December 2023

5 things we’ve learned about finding a good college
for a son with DMD
How we've determined which schools are inclusive and accommodating
by Betty Vertin,
Muscular Dystrophy News Today
October 13, 2023
I always assumed my three sons with Duchenne muscular dystrophy
(DMD) wouldn’t get to experience college. I knew it
would depend on their health, disease progression, and openness
to making it happen, as well as all the typical things like
good grades and test scores.
However, as my boys — Max, 17, Rowen, 14, and Charlie, 12
— have grown, it has become apparent that college is an option,
especially for Max, who’s already begun the process. It
may look different for each of my sons with DMD, but based
on our first experience of preparing to send a son with Duchenne
to college, the following are five things we’ve learned
about finding and choosing a school.
1. Visit more than one
We picked five colleges we wanted to visit: a two-year community
college, two small, private, four-year schools, and both
a medium and large public university.
In the beginning, Max didn’t know what he was looking for. As
I mentioned in a previous column, Max didn’t dream of attending
college because he was never sure he could. So we picked
a variety of sizes and types to help him figure out what he did
and didn’t like about each.
Max recommends that you “don’t count out a school before
you visit.” His top choice is a university he didn’t think he’d like
but fell in love with once he saw the campus and met the people.
2. Don’t limit your choices to schools close to home
This advice came from a good Duchenne mom friend of mine.
I’d assumed Max couldn’t go to college far from home because
he’d be unable to live there alone. She told me not to limit
him, so we will let Max decide where he wants to go, and then
figure out the logistics.
Max has yet to decide, but he’s considering living on a campus
90 miles from home. I am so glad we didn’t limit our choices
based on distance. I love that he may have the typical experience
of living in a college dorm.
3. Not every college has ideal accommodations
I assumed we would find appropriate accommodations everywhere
we looked, but I was wrong. Max was unsure if he
wanted roommates, so he sought a single room and a private
bathroom. But not all colleges offer those options, especially
for first-year students. He would have to live with older students
instead.
As a disclaimer, some of the schools we toured failed to schedule
us a meeting with the campus disability coordinator as
we’d requested. If we had met with every disability office, we
may have found more accessible options.
Unsurprisingly, Max’s top picks are the schools where we met
with the disability coordinator. It sent the right message to us.
Through the tours, he found that he likes the suite style,
where he’d share common areas with roommates but have his
own bedroom and a more private bathroom setting.
4. Talk to students with disabilities
Disabled students living on campus will have firsthand
knowledge that tour guides, disability coordinators, and admissions
counselors do not, simply because they have lived
experience.
For example, Max talked with a former student who
has dyslexia. Yes, his needs differ significantly from Max’s, but
he could attest to the support he received and how easy it was
to work with the appropriate office to ensure accommodations.
That conversation went a long way.
5. Pay attention to the people
On some campuses, everyone walked around wearing AirPods
and looking at their phones. At others, everyone we passed
was engaged and said hello, professors and students alike. At
Max’s favorite campus, people held the doors open for him
without being asked. The vibe just said inclusion — and that
matters when you look different and have different needs
from most others on campus.
We can get Max moved into college by next fall, but first we
need to figure out financial aid, find personal care assistants,
and get answers to a growing list of questions. But in this Duchenne
life, worrying about those things is a win.
Article available at https://musculardystrophynews.com/
columns/5-things-weve-learned-finding-college-son-dmd/