.png)
The Invisible Layers: Parenting vs. Caregiving
I was talking with another mom recently about the hidden layers of parenting versus caregiving, and how so many of the responsibilities, especially as a caregiver, remain unseen.
Both parenting and caregiving are rooted in love, but they follow distinct paths. While each role involves nurturing, protecting, and loving, caregiving for a child with disabilities adds a level of complexity and depth that extends far beyond traditional parenting.
More Than a Parent: The Caregiving Complexity
This distinction hit me hard as she pointed out the pediatrics system rolls up everything into parenting. In pediatric appointments—whether with the neurologist, geneticist, physical therapist, or occupational therapist—I was always Summer’s mom.
Can you believe that I had never noticed that? No matter how complex the issue or how different the context, I was seen simply as her parent. Yet, these weren’t typical checkups; they were appointments where every visit carried layers of emotional and logistical weight that often go unrecognized.
Reflecting on the mental load that caregiving carries, the difference between parenting a neurotypical child and caregiving for a child with disabilities becomes undeniable.
Navigating the Parenthood Spectrum: From Buffets to Fine Dining
As a mother who raised both a neurotypical son and is raising a daughter with autism and a rare genetic disease, I’ve lived through the stark contrasts.
Take recreational programs as an example. My son Jordan had a buffet of choices—sports, leagues, you name it. If he had an interest, there was an opportunity. Many of these programs even offered options for different levels, from house leagues to competitive play.
We’re an active family, so the vision was always that both our children would engage in sports and activities.
But where Jordan had a buffet of options, Summer was left with what felt like a fine dining experience: limited selections, often with barriers that made access difficult, and costs that seemed unreasonably high.
The Emotional Burden of Advocacy
The difference goes beyond logistics; it reaches into advocacy. As a parent caregiver, I’ve felt the deep, aching desire for accessible recreational programs.
I’ve wrestled with the frustration and anger that arise from so many obstacles—whether it's navigating the sparse availability of programs or dealing with the emotional fatigue of constantly having to fight for the bare minimum.
The Beauty and Constraints of Caregiving
This emotional exhaustion is invisible to most, but it is ever-present. It’s the fine dining experience of caregiving—beautiful on the outside, but limiting, costly, and often out of reach.
Reflect on your own journey as a parent or caregiver—how do your experiences compare? Share your stories and insights in the comments below. Let's create a space of support and understanding for each other.
