Updated: Feb 18, 2021
AJ’s senior yearbook quote: “Never let your circumstances define you.”
At age 13 months our son, AJ, was diagnosed with a rare muscle disease. The neurologist told us he had myotubular myopathy. After 12 years of searching for a genetic diagnosis, it turned out that AJ actually had a disease that is a ‘close cousin’ to MTM known as titin-related centronuclear myopathy (also known as titinopathy). The neurologist advised us to plan for his future. “Save for college” she told us. And here we are, the parents of an 18 year-old, standing at the precipice of campus life. In the sometimes heart breaking world of rare disease we appreciate that not all families reach this milestone. We are profoundly grateful to be here and wanted to share our journey with others who may travel this path. Below are a few things we learned along the way which we hope helps other families. Best wishes to you in your journey.
Here’s a bit of background, AJ has a titin-related centronuclear myopathy. He attends our local high school. He uses power mobility at school and has a 1:1 nurse. His school day includes a hybrid of ½ day of online classes and ½ day spent at the actual school. It was a good fit for his interests and academic skills to pursue attending college. I should note however that although college seemed like a good next step for AJ, many people can pursue other paths to adulthood including other forms of vocational preparation. Please note that our search took part in the United States and I realize that high school and college situations vary by country. You may also want to consider whether a high school graduation plan is the right choice. Keep in mind that in the US, students in some circumstances can stay in their local school system until age 21. This may allow for a less rigorous high school curriculum as needed to balance rest, manage health, etc. and can include vocational training and preparation through age 21.
Where to begin
There are thousands of colleges and universities in the US, so it is a bit overwhelming to think about how to narrow it down. For us, we started with a geographic limit to our state of residence. Many of the social support services are state-based so it seemed like a logical parameter to stick with our home state. We started with a complete list of colleges in our state. We then asked the guidance counselor for some recommendations and attended a few college fairs, too. College fairs are one way to gain information about a variety of schools in a short period of time. We then physically toured 10 different campuses.
Start early. We started our first campus tours in Sophomore year. This took off a lot of the time pressure that some people face. AJ was also not the kind of kid who could attend a full day of school, then drive two hours away and do a two hour campus tour. So, we needed extra time, advance planning and took advantage of school breaks to visit schools.
Round one: Campus visits (x 10)
I really think for people with physical disability, especially wheelchair users, campus visits are a must. Most colleges now have fantastic websites with loads of information and even virtual tours but please do not rely solely on a website. Private colleges and older colleges can really have problematic accessibility and we realized that even public institutions that are supposed to be accessible, are really not. Just as an example, AJ’s dad looked at his own alma mater and only 25% of the buildings on that campus are accessible. Some of the accessibility issues we saw included:
Inaccessible buildings (both academic and residence hall buildings)
Tour guides that took the group down a set of stairs
Rugged terrain like cobblestone sidewalks, broken up sidewalks and hillswe found electric ramps for stairwells buried behind a table and chairs
One campus was on a cliff overlooking a river and the tour guide mentioned that the wind off the river in the winter was “really special” – he also noted that some winters they had to tie a rope between the buildings for safe travel on campus due to the wind and ice. So, not too wheelchair friendly.
We went on one tour where 10 minutes in, AJ realized that he did not feel welcome on campus due to physical barriers and he was ready to leave. These issues and more are just some of the reasons why it’s really important to do an in-person, physical tour of campus.
Make sure to let admissions know about your accommodation needs before visiting campus. After a few campus visits we realized that group tours and open house days were not for us. It was just too hard to hear, see and keep up with a group in a wheelchair plus hearing aids. We started asking for either very small group tours or private tours. Most colleges will try to avoid this, because of the volume of prospective students, but I highly recommend you strongly request this.
Round two: meet with the Office of Special Services (x 6) and academic departments
After our 10 campus tours, we then narrowed our search down to re-visit six schools. On these follow up visits we set up two meetings, one with the office of special services (OSS) and one with the head of the academic department of AJ’s intended major. Each college will have a department whose job it is to create and support any accommodations needed due to a disability. Different campuses have different names for this department but you can find them on the website. Requesting these meetings was really informative. For example, for one of the colleges I left four messages and sent three emails requesting a meeting and no one from that office returned our call. That college was removed from consideration because with AJ’s high need for adaptations, we knew this lack of responsiveness ruled this school out of consideration.
The point of this second round of visits was to determine:
How responsive is the OSS department
What is the feel of the OSS department
Do they have the resources to support our requested accommodations
Are they able to meet his needs?
If you are thinking about a college plan – start a document brainstorming accommodation ideas now. We started our list in Sophomore year and added to it as the years went on. Each time we visited OSS we picked up new ideas and added them to our list. We separated our list into different categories like academic needs, housing needs and medical needs. We went over this detailed list as a prospective student at six schools.
Well, what we found out by visiting these different OSS department was fascinating. We definitely got a feel for the campus culture of how accepting each one is to folks with disabilities. One gal told us how great she was at, “Fighting for her students’ accommodations to be followed” and how much “education” the faculty needed with understanding the need to follow mandated accommodations. She also alluded to budget constraints that would limit AJ’s access to needed modifications. So, this school and a few others were excluded from our list during round two.
Visit OSS departments before you are accepted. It really was fascinating to see how finding the right fit for college was way more than academics and visiting the OSS departments was a big part of that. The window of time between acceptance and commitment is very short so we wanted to have these meetings set up well before that.
After this, AJ applied to and was accepted to five schools. After narrowing it down to two top choices we went back again to meet again with OSS again and see the wheelchair accessible housing. AJ made his selection and we are all very excited.
Concurrent round: setting up supports
At the same time that we were searching for colleges, we were learning about different government supports for people with disabilities.
Some of these include:
Department of Vocational Rehabilitation Services
For AJ, he needed to wait until turning 18 to access some services. Applying for these services depends on many personal factors including assets/income, medical needs and what state you live in. For us, applying for these programs was a critical aspect of preparing for more independent living on a college campus due to the need for personal care assistance/nursing services.
Last round: Affiliating with the office of special services
After the admissions process, the last step includes affiliating with the college office of special services. Accommodations and services are covered under different laws in college versus high school. In order to receive services, a student must identify their needs to the school and provide medical documentation to prove need. A student would then work with the school to make an accommodation plan.
Tip: Affiliate with your college’s office of special services sooner rather than later.
Our family’s journey to campus life took place over many years with a lot of advanced planning. Best wishes to you with your transition to adulthood path. We are all excited for the adventures ahead.