“I remember being so curious about your condition in high school, but too sheepish to ask you. You inspired many investigative diagnostic queries into my mother’s medical texts, and as a result, I learned a whole hell of a lot about many disorders, none of them being the correct one! I wanted to know what you were going through, what it was like to be you. Was it painful? Your ravaged skin seemed like it would be painful even to a tender touch.”
I received this email from a woman I graduated with from high school. I had no idea she even knew who I was, as we never spoke to one another. Twenty-five years later, her words perfectly illustrate my rationale for the advice I’m about to give.
I realize my title is perplexing. Aren’t all children atypical in some way? I challenge anyone to find a “normal” child out there, devoid of any quirks or idiosyncrasies. For the purposes of this piece, I use the term “atypical” to mean children who have visible or invisible issues that cause them to be notably different from their peers.
In 1985, I was diagnosed with scleroderma at age 10. My mother shared minimal information about my disease with me and told me not to tell anyone about it.
I love my mom and am eternally grateful to her for raising me. I do feel that she made a mistake in her approach to dealing with my disease.
She had her reasons for her decisions, which she now readily admits were flawed. Like many parents, I think she wanted to deny there was anything wrong with her daughter. If she denied my disease with fierce devotion, maybe it would go away.
My mom’s plan not to discuss my disease was half-baked at best.
It’s difficult to ignore such a potent physical metamorphosis. Scleroderma caused my limbs to contract and I developed red spots all over my body. My disfigurement aside, there were so many things I couldn’t do that set me apart from my peers.
Despite my mom’s efforts, ignoring my disease didn’t make it less real. I was not equipped with the tools to accurately communicate information about my disease. It took me until age 40 to develop a solid and confident response to the whispers that have followed me around for the past three decades.
My advice to parents is to be open about whatever your child’s issues happen to be. Children take cues from their parents. If their parents are hesitant to openly discuss important topics, they will grow fearful of them and the ‘secret’ will fester. Don’t underestimate the toxicity of secrets.
Before I became a reading specialist, I was a fourth grade teacher. Each year, I had several students who fell into the “atypical” category. Some parents forbade the school to talk about their child’s differences with the class. They claimed that they wanted their child to have as normal of an experience as possible.
These parents loved their children with fierce intensity and did not want them to suffer from labeling or negative stereotyping. Of course, I respected their wishes and did not violate their request.
Other parents were open to coming in and sharing information about their child with my class. I would invite these parents in and seat them on my swirly black leather chair. My students sat on the floor in a circle surrounding the parent speaker and were given the opportunity to ask questions and learn.
Sometimes the “atypical” child wanted to be present for the conversation and even lead the discussion. Other times, the child chose not to remain in the room while the dialogue occurred.
Over the years I had parents talk about autism, cerebral palsy, Tourette syndrome, ADHD, peanut allergies, hearing impairments, and more. If language barriers or other factors kept parents from conducting these discussions, the school social worker or I would step in.
Each time, I saw a transformation in how my class treated their “atypical” peer. Without exception, these discussions led to deeper understanding and empathy. I only wish I had been brave enough to start off these discussions by first telling my students about my scleroderma and explaining why I looked different. This remains one of my hugest regrets, as I think it would have brought comfort to so many of my former students.
Parenting an “atypical” child presents extraordinary challenges. Every circumstance is different and must be carefully considered by those who know and love a child best.
Some parents may argue that they don’t want to call further attention to their “atypical” child or cause them to feel insecure. I’m willing to bet that 99.9 percent of the time, that child already feels quite different.
If I could turn back the clock, I would have wanted my mom to come into my childhood classrooms each year and talk to my peers about scleroderma. I think it would have demystified the rumors that surrounded me and allowed me to be comfortable in my thick skin decades earlier.