“Are there any unique challenges with your child that I should know about?”
Two small blank lines stared back at me, barely enough space for a few sentences. Yes, Lucas is on the autism spectrum and faces various learning hurdles in school, but there’s an IEP file that elaborates on all that. This wasn’t the place to rehash it all.
“Are there any unique challenges with your child that I should know about?”
The pressure mounted as I felt my face heat up, and a fog clouded my thoughts. I struggled to translate my feelings into words on the bright yellow paper. The neuropathy in my hands made it difficult to grip the pen, and the letters began to blur as I focused harder.
“Are there any unique challenges with your child that I should know about?”
With a shaky hand, I wrote, “Yes, I have Lyme disease.”
The pen slipped from my tingling fingers. I looked at those two words: Lyme disease. How could I explain the impact of having a disabled parent on my child’s school experience? Guilt washed over me, and tears threatened to spill onto the page. How could I convey to Lucas’s new teacher the obstacles my son faces because his mom isn’t like other parents?
While other children are gently awakened by their parents each morning, Lucas relies on an alarm to ensure he’s ready for school in case I’m not awake. When other kids come downstairs to a warm breakfast, Lucas often gets his own cereal, trying to save my limited energy for more essential tasks. While other parents walk their kids to the bus stop and are there when they return, Lucas walks to the corner by himself each morning and back home alone each afternoon, as I struggle with breath and mobility on bad days.
When other parents assist their kids with homework, Lucas has a mom who sometimes can’t remember spelling or math due to neurological symptoms. And while other parents volunteer for school events and PTA positions, Lucas’s mom fights to make it to conferences, often looking less than her best if she can make it at all.
“I have Lyme disease.” Those words felt like a blur, whether from my tears or the confusion in my mind, I couldn’t tell. The weight of guilt was heavy, and I needed to move on. I looked at the last question on the sunny page, eager to finish and retreat to my bed.
“What are some of your child’s greatest strengths?”
Empathy. The word struck me immediately. It’s remarkable for a child on the autism spectrum to possess such deep empathy, yet that’s exactly who Lucas is. Time and again, teachers, friends, and even Sunday school leaders mention it. Witnessing his mother endure pain and illness has given Lucas an extraordinary ability to care for others. Sure, his autism makes it challenging to identify feelings at times, but once he does, he’s determined to help however he can. He often brings me a blanket when I’m hurting or puts on his little brother’s favorite show when I need to rest.
Lucas is also impressively independent and takes responsibility for himself. It dawned on me how much learning to fend for himself has equipped him with skills he might have otherwise struggled to develop. He wakes up on his own, dresses himself, adheres to his morning schedule, and manages his time. For all my guilt about not being able to do these things for him consistently, I realized he was mastering valuable life skills that many adults today seem to lack.
Lucas is incredibly determined. This didn’t come easily; he once struggled with frustration and quick meltdowns. But having a mom who can’t always swoop in has shaped him, pushing him to work through challenges himself and develop resilience.
The pen slipped from my grip yet again. I tucked the form into his folder, zipped up his backpack, and returned it to its hook by the front door.
“I have Lyme disease.” It’s not only one of my child’s significant challenges but also the catalyst for many of his strengths. There will be moments this year when I feel overwhelmed with guilt about my shortcomings as a mom — wishing I could be better.
Yet, I hold onto the hope that Lucas will continue to grow despite these adversities, that he’ll discover his best self when I falter, and that one day, as he reflects on his life, he will remember how much I love him and recognize that my disability was more of a springboard than a barrier.
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Summary:
Navigating parenting with Lyme disease presents unique challenges, particularly for a mother of a child on the autism spectrum. Despite the difficulties, the experience fosters strength, independence, and empathy in the child. The mother’s disability shapes their dynamic, leading to growth and resilience in them both.