The sounds of happy children waft toward me as I walk into the children’s museum to pick up my 5-year-old son after a class field trip. I find him with the other students in the lobby, listening to their teacher read a story as they wait for the parents to arrive. Henry’s voice tears through the sweet atmosphere as he spots me, screams and melts down in front of his classmates.
Earlier, the entire class had ridden the city bus to the museum, and Henry wants to return in the same manner. No amount of consoling is going to fix this. Somehow, his teachers and I failed to prepare him adequately for this part of the day. A spotlight seems to be on the two of us as he continues to melt down. I feel the stares sear into my back.
“Honey, take a deep breath.” I kneel to his height, look in his eyes, and speak calmly, but we are far beyond the stage of reason. Trying another strategy, I pull him close to me and attempt to soothe his out-of-sync body with deep pressure input. As I tuck my head over his shoulder, I see her. Henry’s other classmates and their parents are leaving, but not this mother. Our eyes meet before mine dart away. For that brief moment, I think I see her inner debate: What can I do? What should I do? She walks away, and I don’t blame her. Maybe I would have done the same thing.
We are now past the days of sudden meltdowns, but I still think about the day of the museum field trip. I wish that mother had known it was ok to approach me – to ask me how she could help or to simply put a hand on my shoulder to let me know I wasn’t alone. I wish she had known it wouldn’t be intrusive or rude. I wish she had known how tears would fall in gratitude if just one person was brave enough to help.
A simple Google search yields excellent ideas on how to be a friend to a special needs mom, and I’m thrilled to see these articles exist. But I think the real issue is much deeper than simply not knowing what to do. Most of us, if we put on our thinking caps, would know the right thing to do. The real problem? We don’t know how to feel.
We can’t figure out the line between empathy and pity.
Do you feel sorry for these moms you see in the trenches? Do you pity them? Do you thank God you’re not them? I know the heart behind these questions, because I used to ask them. I was the one on the outside looking in, completely uncomfortable with my thoughts and unable to distinguish the difference between Christian compassion and shallow sympathy.
Even when I discovered I had a disabled child of my own, the feelings didn’t become less complicated. I realized my own desires were mixed. I want others to recognize my challenges, but not feel sorry for me. I want them to care, but not put me on a pedestal. I am not extraordinary because my child has special needs; I’m putting one foot in front of the other, with God’s grace, every single day.
To sort out my own conflicting feelings, I looked up the definitions of empathy and pity. Empathy involves “imaginative projection” and “understanding, being aware of, being sensitive to, and vicariously experiencing.” One definition of pity is “something to be regretted.”
A vise squeezed my heart. Something to be regretted. I don’t want anyone to feel this for my family. To regret the autism is to regret Henry. There is no Henry without autism. We cannot sort out the part that is autistic and the part that isn’t. What I do wish for is empathy.
Perhaps, if everyone could imagine how others feel, fewer moms would crouch all alone next to their hurting children. If we could project our own emotion into an unfamiliar situation, maybe fewer moms would feel the heat of others’ stares. Maybe more moms would be placing their hands on shoulders and whispering words of comfort. Maybe we would all feel a little less like strangers and a little more like community.
Meredith has generously made the following book recommendations for anyone who might be looking to read more on the topic of autism. She is a wealth of knowledge herself, and I highly recommend her blog!
*The following links are affiliate links. If you decide to purchase any of these books through these links, at no additional cost to you, a small percentage will come back to help support Kindred Mom.
The Thinking Person’s Guide to Autism edited by Shannon Des Roches Rosa, et al.
Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm
Loud Hands: Autistic People, Speaking published by the Autism Self Advocacy Network
The Reason I Jump by Naoki Higashida
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
Switched On: A Memoir of Brain Change and Emotional Awakening by John Elder Robison
Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him by Sally and Nathan Clarkson
Meredith M. Dangel writes at MeredithMDangel.com about her unique joys and challenges as Mom to Henry, a smart, tender, quick-witted, train-loving, autistic 7-year-old with an infectious smile. She longs to encourage special needs parents on their journey of transformation and empower others to see inclusivity doesn’t have to be difficult; it can be beautiful. You can connect with her on Instagram and Facebook.