December 5, 2017
Stop & Stare
There were certain things my dad was persistent on teaching me. Making sure I knew it was wrong to point and stare at people were biggies. Now, my son is someone who gets plenty of points and stares. Since my dad instilled how impolite those actions are, I initially felt a gamut of emotions when our son received them.
At the zoo, mall, and school, I had nodal moments: realizing our family was at the end of finger points and long stares. “Did you see that little boy?” “Aww, poor baby.” “What’s wrong with him?” Coming from young children, okay. When adults “Aarrgh” like pirates at our son because he wears an eye patch, it’s rude. Asking if he patches and wears glasses for fun appears thoughtless. Beyond teaching me valuable lessons on self control and decorum, having a child with an exceptionality has motivated me to better understand the power of words, how to best approach children with exceptionalities, and how to most responsibly teach my children about differences.
Recently, I turned to a college friend for help. Mandy Sheridan is a mother of two: Bailey, an accomplished child actress, and Madden, an inspirational young boy. Madman, as he’s also known, was born with Jeune Syndrome—a rare genetic condition. Children with Jeune are born with small rib cages. Consequently, lungs might neither fully develop nor expand when the child breathes. Surgery is common, and Madman undergoes surgery every four to six months. He’s had several chest expansion surgeries, the VEPTR procedure. The vertical expandable prosthetic titanium rib enlarges the chest and attaches to the ribs. As Madman grows, surgeries are needed to expand the VEPTR. Like many with Jeune, Madden has a tube to help him breathe and eat. The family calls it a “tubie,” and it’s visible.
Many of us are cautious of the unknown. The hesitancy people display around Madden frustrates Mandy: “When people purposefully avoid him or don’t include him, it’s frustrating. They shoo their kids away. I don’t know what they’re afraid of.” Rather than avoiding and being afraid, Mandy encourages parents to teach their children to ask questions: “If you want to know, ask. If you’re worried about your child hurting mine, just ask if there’s anything you need to tell your child.”
Mandy believes many parents are trying to protect Madden and their own children. Kids, however, just want to play and parents hinder that. “In their hearts, kids are wonderful,” shared Mandy. Madden started school this year, and the children in his VPK class have been inclusive: “Kids are phenomenal,” she added. Hearing parents say things like “don’t touch” and “stay back,” Mandy tries easing fears and encouraging inclusivity: “We compare his tubie to crutches and explain it helps him breathe.” She believes parents fear their children will pull Madden’s tubes and step on his vent. A nurse is with the family 24/7, and Mandy’s confident they can handle anything. She focuses on letting all kids be kids.
With adults, Mandy focuses on the power of words. Parents must model responsible word choice. Don’t ask what’s wrong with another child: “There’s nothing wrong with him, he just needs help breathing.” Mandy’s been asked what she did during pregnancy to cause Madden’s condition and if it’s a leash around his neck: “I have to laugh,” she recounted. She educates adults so that they don’t ask insensitive questions again. The experience has taught big sister Bailey a lot: “She doesn’t see disabilities. She understands that different people have different needs.”
Parents need to engage children in conversations about language. Have age appropriate discussions about just what normal means. Explore the negative tone of wrong, within the context of differences. The movie Wonder was recently released, and it follows a young boy with significant facial differences who undergoes numerous surgeries to help his vision and breathing. After screening for appropriateness, parents can use movies as catalysts for conversations about differences. With younger children, picture books are effective. When we learned our son had to patch, we read Jacob’s Eye Patch together. Another option is going on an online journey, as a family, to learn more about particular conditions and how to best address differences.
Stop & Shift Perspective
Recently, I saw a marquis that read, “The only disability is a bad attitude.” Rather than teaching our children to focus on perceived limitations, let’s help them shift perspective to abilities. We all have the ability to focus on kindness, and we can use our unique abilities to help others. As parents, we are responsible for helping our children develop the capacity to thoughtfully engage with others—regardless of differences.