By Patricia McAdams, Staff Writer, Nevus Outreach
A roomful of moms gathered during the 2012 Nevus Outreach Conference to share stories and bounce around ideas for raising happy, confident children. This session was led by Kathy Stewart, mom to 16-year old Megan, who has both a large congenital melanocytic nevus (CMN) and neurocutaneous melanocytosis (NCM). Stewart is one of the co-founders of Nevus Outreach, and wife to Nevus Outreach CEO Mark Beckwith.
While conversations touched on a number of practical topics, the most interactive conversations fell into certain categories — covering up vs. not covering up, educating others, and sibling relationships.
Covering up – or not covering up
A surprising number of children and teens own their nevus and love their spots. But not all kids are comfortable uncovering and, even the ones who are, want to be in the mood.
As they are choosing clothes for an outing, one mom simply asks her daughter, “Are you in the mood to get stared at and to talk to others about your birthmark — or not? Sometimes she is. Sometimes she is not.”
When in the mood to cover up, though, kids want to look as stylish as anyone else. One mom found an online company called Capelsio that she and her daughter love.
Another mom raves about Target. “I want to send them a thank you note,” she says. “They’ve got this great line of bathing suits that come with Capri pants and a matching bikini top — for about $15. It’s almost like someone with a nevus designed these suits. My daughter is sensitive about her nevus, which is on her leg and thigh. She’s in heaven with these suits, because she looks so hip and cool in them.”
Most moms agree that letting your child take the lead in whether to cover up, or not, is the best approach. Then empower him or her with a language to respond to others if they do not, or cannot, cover their nevi. One mom said she and her daughter “practice” their smiles and responses with one another, so they are prepared when the need arises.
Remembering that CMN is a rare disease is helpful. Most people have never seen anyone with a birthmark as large as some of our children may have, so folks may do a double take simply because they are surprised. Most, at least, do not mean to be unkind.
One mom, who has a little girl with a facial nevus, has no trouble with children’s harmless questions, she says. “They will ask, ‘What is that?’ I tell them it’s a birthmark and they say, ‘Oh, okay.’
“It’s the adults!” she says, angrily. “They are so accusatory. They ask, ‘Did you drop her?’ ‘Did she run into a coffee table?’”
Furious, she responds, “How dare you accuse me of hurting my child!”
Regrettably, Stewart is not surprised by such accusations and says, “We’ve had folks call social services on our nevus families.”
One mom, who is a teacher, explained that teachers are required to pick up the phone if ever they suspect abuse, adding how life saving that obligation is for boys and girls in threatening situations. “In our city, we have a child who would have been dead, if a teacher had not picked up the phone.”
But one day, this mom’s school provided handouts to all the teachers showing images where bruises typically appear on abused children. Stunned, she recognized that the images on this handout perfectly matched her daughter’s nevi. Educating others is even more imperative to protect your family from accusations of abuse.
Raising awareness about CMN, in fact, is just an ordinary part of what Nevus Outreach families must do. It’s even part of the group’s mission statement. Overall, everyone agreed that the best way to manage stares and questions is to take advantage of teachable moments.
Act — not react
Moms offered several suggestions for raising awareness and responding to others:
- Educate — hand out brochures on CMN.
- Meet with teachers and kids in the beginning of the school year.
- Make up stories about having a birthmark and read to your child’s friends and classmates. Nevus Outreach mom Lisa Witherspoon, for example, wrote Noah’s Mark to read to the boys and girls in Noah’s class.
- Face painting offers an informal way to chat with your child’s classmates individually to answer their questions about your child’s nevus.
- Make up an album with photos showing your child before, during, and after tissue expansion surgery that he or she can take to Show and Tell.
- Download CMN support literature for teachers from the Caring Matters Now Web site.
- Be positive because kids take their cues from us.
Stewart pointed out, too, that giving kids confidence and protecting their spirit sometimes means separating them from others, if the burden of CMN and NCM is too heavy. Sometimes this means whisking them away from a bullying child for an ice cream cone, and sometimes this means home schooling them. "We home school Megan," says Stewart. "It's been a challenge and it's not right for everyone, but it has worked for us."
Moms talked about the pros and cons of telling their child with a nevus that he or she is “special.” While this distinction can bring a child confidence, it can be a hurtful designation in a family with more than one child. This happens unintentionally sometimes when, because of the newness of CMN, parents can’t find any other words to explain this large birthmark to their other children, when they bring a new baby home from the hospital.
Even without referring to one child as special, some siblings resent the extra attention a child with a nevus might require. And some sensitive siblings don’t resent their brother or sister with a nevus so much as they shoulder the burden of the birthmark on themselves. Either way, situations like this can put healthy relationships between siblings at risk. Several moms report that family therapy really helps when relationships need to be healed.
The good news is that teens gathered for the 2012 Nevus Outreach Conference thought that having a sister or brother with a nevus was a good thing. They reportedly learned a lot from their sibling and it had a positive impact on their lives overall.
In many ways this session was a celebration as one mom after another talked about the strength and resilience of their children, who are so comfortable in their own skin.
“I’ve learned so much from this amazing girl,” one mom said of her daughter. “She is so much more poised and confident than I was at that age,” said another of her child. Yet another mom said her daughter tells friends that it’s cool to have a birthmark, “because I get to go to Chicago to see this great doctor, and I get to go to Dallas, where I have lots of friends.”
Everyone could relate to one mom, who said that the biggest weight off her shoulders came at her first Nevus Outreach Conference, when she met so many adult nevus owners.
“Oh my gosh, they are married. They have children,” she says. “Most of our doctors have never met an adult with a nevus and don’t know they are living fabulous lives. There are so many examples around here.
“Some doctors just don’t have a clue.”
If you missed this meeting, and wish you could have been there, you should plan on attending the 2014 meeting July 2-5, 2014, in Dallas, Texas! “We hope to see you there!” Stewart wants you to know.