“Are there any specific challenges your child faces that I should know about?”
The two small blank lines on the form stared back at me, barely enough space for a few words. Yes, my son Lucas is on the autism spectrum and faces various learning challenges in school, but all that information was neatly tucked away in an IEP file. Rehashing it here felt redundant.
“Are there any specific challenges your child faces that I should know about?”
Again, those two little lines beckoned for an answer. My heart raced, and the weight of the moment grew heavier as I struggled to articulate my thoughts on the sunny yellow paper. The neuropathy in my hands turned writing into a challenge, and the words began to blur as I desperately tried to focus.
I finally scribbled, “Yes, I have Lyme disease.” The pen slipped from my tingling fingers, and I felt a wave of emotion wash over me. How could I possibly convey how having a disabled parent affects Lucas’s school experiences? Guilt washed over me, leaving me teary-eyed as I considered how much my child had to endure simply because I wasn’t the typical mom.
While other kids wake up to gentle nudges from their parents, Lucas relies on an alarm clock to get him up for school, just in case I’m not fully awake. When his classmates enjoy warm breakfasts, Lucas often helps himself to cereal, saving my limited energy for the essentials. Instead of having a parent walk him to the bus stop, he makes the trek alone, as I struggle with the steep hill near our home on tough days. When other moms help with homework, Lucas has to navigate the challenges alone because my neurological symptoms sometimes make it hard for me to assist.
“I have Lyme disease.” Those words felt heavy and unclear, either from tears or the disarray in my mind. The guilt was suffocating, and I couldn’t bear it any longer. I hastily glanced at the last question on the bright page, eager to finish and retreat to my bed.
“What are some of your child’s greatest strengths?”
The answer came to me almost instantly: Empathy. It’s remarkable for a child on the autism spectrum to possess such a profound sense of empathy, but Lucas does. Teachers, friends, and even Sunday school instructors often mention it. Watching me cope with pain and illness has seemingly gifted him with a remarkable ability to understand and care for others. Sure, he sometimes struggles to pinpoint feelings, but once he does, he’s fiercely determined to assist. He’s often seen bringing me a blanket when I’m in pain or comforting me when I’m having a tough day.
Lucas is also impressively independent, taking charge of his own morning routine and managing his time well. I’ve come to realize that my inability to do everything for him has inadvertently equipped him with essential life skills that many adults seem to lack today.
He is incredibly determined—a trait that didn’t come naturally to him. In the past, he was easily flustered and quick to give up. However, I see now that not having a mom who can always swoop in to save him has pushed him to overcome obstacles and find solutions on his own.
The pen slipped from my fingers once more. I tucked the form into his folder, zipped up his backpack, and hung it by the door.
“I have Lyme disease.” It’s not just a challenge for my child; it’s also the source of many of his strengths. There will be countless moments this year when guilt will creep in as I wish I could be the mom I envision. But I hold on to the hope that Lucas will continue to grow despite the challenges, finding strength and character in the areas where I may falter. One day, I hope he’ll look back and remember my love, seeing my disability not as an obstacle but as a catalyst for his growth.
This article was originally published on Sep. 10, 2016.