Originally published by Hemophilia News Today on August 21, 2024
I’m trying to accept that my youngest son, Caeleb, is a college freshman. People say that time flies by, and we should enjoy our children when they’re little. Those people are right.
As my son begins college, I’m apprehensive. I long for the days when I’d go into school before the year started and offer a teaching session about hemophilia to the instructors and staff who would care for Caeleb. Now, it’s time for my son to take charge of his blood disorder.
Still, I want professors to consider the following when they teach students with chronic illness.
Dear professors,
Please understand that not all illnesses are visible. Caeleb has severe hemophilia A and struggles with chronic pain and joint damage from years of internal bleeding. He’s an ambulatory wheelchair user, which means his chronic illness limits his ability to walk at times, particularly long distances. But there are good days when he can walk with only a limp.
Mornings are difficult, as the joint pain Caeleb endures can be excruciating. Getting out of bed is often close to impossible. Please understand that tardiness is not his way of life, but sometimes it’s impossible for him to get up and out quickly. While missed classes aren’t optimal, they can’t always be avoided. Please understand that going to class on pain medication isn’t conducive to his learning. He’ll reach out to you and catch up later.
At the same time, please treat my son like everyone else. Sometimes, people can’t look past a wheelchair or cane, and they’re perplexed that a young man who looks healthy could need a mobility device. His condition is nobody’s business, but if you ask Caeleb about his bleeding disorder, he’ll happily share information about it with you.
However, please let him determine what he shares and with whom. He doesn’t like to feel different, and when his pain is breaking through, it’s hard for him to concentrate. In those moments, he feels disabled, and that designation can be hard for him to accept.
While hemophilia isn’t a disabling condition for everyone, some, like Caeleb, endure severe complications. Because those complications have greatly damaged my son’s joints, the disability classification is necessary.
To the professors teaching my son, I ask that you see him for who he is — a capable, motivated student eager to learn and succeed. Understand that there may be days when he needs accommodations, whether it’s extra time to get to class, flexibility with deadlines, or the ability to participate remotely when possible. These accommodations aren’t about giving him an advantage but leveling the playing field so he can achieve his potential alongside his peers.
Also, please be mindful of the emotional toll that chronic illness can take. Caeleb has faced more than his fair share of challenges, and there are times when he may feel overwhelmed or discouraged. Your kindness, patience, and willingness to listen can make a world of difference to him. A simple gesture of understanding, a word of encouragement, or an acknowledgment of his efforts can help him stay motivated and engaged, even on the most challenging days.
As Caeleb navigates this new journey, I hope you’ll partner in his success. By creating an inclusive and supportive learning environment, you can help him excel academically and grow in confidence and self-advocacy. My wish is that Caeleb leaves your classroom not only with knowledge but also with the assurance that he can overcome any obstacle he encounters.
Thank you for taking the time to read this note, and thank you for the role you will play in shaping Caeleb’s college experience. Your understanding and support mean more than words can express.
Sincerely,
A mom who believes in her son
