This is day 23 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Kerith Stull is being brave and asking special needs moms some hard questions about their own responsibility in community.
There seems to be two opposing messages from special needs moms out there:
(1) The Special Needs Mom Superhero Myth. Some special needs moms believe that because they have it so much “worse” than typical moms that they have to be and are so much better than typical moms. It’s that whole “God only give special children to special parents.” In all honesty, I feel those pangs once in a while when I want others to notice my child and recognize my unique struggles. I proudly display a car magnet with signature colors on its ribbon announcing my child’s disability. I enjoy the extra kindnesses the members of my church show Brielle and me because of her “uniqueness.” But, I didn’t get any super hero powers just because my 18-year-old daughter, Brielle, has cerebral palsy. And I can’t seem to find my super hero cape anywhere amongst the well-worn clothes in my closet.
(2) The Belonging Myth. Many special needs moms want to be treated like every other mom despite their child’s “differentness” and some are very outspoken about feeling left out. I spend a lot of time on the sidelines, watching other moms interact in close huddles at playgroups in church basements, PTA meetings in school cafeterias, and observation rooms at gymnastics and dance classes. Wherever new mothers congregate, they use their babies’ accomplishments as currency to pay for their membership cards to the mommy club. I cannot trade accomplishments. Brielle does not have the same kind of successes. Without the proper currency, I am not part of their club. As the parent of a special needs child, I often feel like the odd mom out, living on the margins of everyday life. Just like the elementary school girl at recess or the college girl at sorority rush week, I want to belong, to be included in their circles, to be one of them. But, what do we need to get from those other moms to feel like we belong?
What’s Your Role?
Here’s another idea you may not have considered: What if special needs moms are sometimes inflicting self-banishment on ourselves?
Have you ever hung back from a group? Not gone to school activity? Not engaged another mom in conversation about their child? Is it that your go-to self-defense mechanism? It was mine for a very long time. Maybe you want to avoid those uncomfortable moments. Perhaps you are afraid they wouldn’t know how to talk with you. Maybe it’s easier to isolate yourself rather than risk hurt. But, isn’t that taking away that mom’s opportunity to show you some grace? Isn’t that taking away an opportunity to open yourself up to someone and find connections? Isn’t that missing an opportunity to educate someone about your child’s disability and increase awareness that may spill over into their future interactions with other special needs children and parents?
Hmmm….. Maybe I got you thinking on that one.
Already One of Them
Maybe I’m stating the obvious here, but if we want others to connect with us, we shouldn’t have unrealistic expectations. We need to meet them halfway.
It all starts with finding common ground. Every mom has a similar experience, a similar set of responsibilities, joys, fears, hopes, and frustrations. Special needs moms have a few complications, sometimes a lot. But, every mom (every person) also has a distinctive journey with its own struggles.
That Super Hero Myth can be dangerous territory that excludes other moms and puts us in a class by ourselves. I’m all for empowering and pumping each other up, but let’s be realistic and not cause more drama or separation than there already naturally is.
Kerith Stull earned a Master’s Degree in communication and worked in marketing before becoming a stay-at-home mother when her children were little. She has been married to her high school sweetheart for the last 24 years and is a recent semi-empty-nester since her 20-year-old daughter moved out to go to college. Kerith blogs about special needs parenting issues at brielleandme.net with her uniquely positive perspective. You can also find her on Facebook, Twitter, Pinterest, and Google+. She recently published a book, Brielle and Me: Our Journey with Cytomegalovirus and Cerebral Palsy, about her experiences with their 18-year-old special needs daughter and their family’s journey of hope, determination, love, and faith.