Allison Hurwitz, MA, MSW, and Shawn Reynolds, PhD
Living well with a visible difference
Piggybacking on earlier interactive sessions of the most recent Nevus Outreach Conference, parents continued their ongoing discussion of issues related to living with a nevus. Leading this session were Allison Hurwitz, MA, MSW, and Shawn Reynolds, PhD.
In addition to being a psychotherapist, social worker, and art therapist in private practice in Princeton, NJ, Hurwitz has a 12-year old niece, Ariella, who was born with a congenital melanocytic nevus (CMN). And Reynolds, a clinical child psychologist at the Glenrose Rehabilitation Hospital in Edmonton, Alberta, Canada, has a five-year old daughter, Kalina, with CMN.
Sharing resources and tapping the collective wisdom within Nevus families is a powerful reason for attending the biennial Conference and this session was no disappointment. Hurwitz started the meeting by offering three valuable handouts to families:
- “Real life issues for parents resource guide” names literally dozens of books, Web sites, and social media for kids, teens, and parents that might be of interest.
- “Strategies for living well with a visible difference” offers countless practical suggestions for everyday issues from handling rude reactions, to understanding resiliency, to helping your child to realize she is not alone — and more.
- “Famous people who have overcome challenges” shares the story of a number of individuals who have significant accomplishments despite a challenge of some sort. Among those Hurwitz named are Walt Disney, who had attention deficit disorder; Albert Einstein, who had dyslexia; Jim Abbott, who was born without a right hand and yet became a major league baseball pitcher, and others.
When a child is first born with CMN, families are initially caught up in the grieving process, but parents say they become more accustomed to dealing with the public over time. In fact, families had mastered many strategies for raising awareness and responding to the reactions of strangers.
In general, parents gathered in this session were a proactive group who anticipated teaching moments and came prepared for them. They suggested the following:
- Keep brochures about CMN and Nevus Outreach handy when going to the pool.
- Take pictures and put them on your cell phone.
- Send books about being different along with your kids when they go to school and camp.
- Write the stories yourself like Nevus mom Lisa Witherspoon, who wrote Noah’s Mark to read to her son’s friends.
To explain to her child’s teacher and other school personnel about her child’s nevus, one mom writes stories, downloads information about Nevus Outreach, and sends everything to the teachers, the school nurse, counselors, and administrators in her child’s school. She asks them to respond to acknowledge that they had received her information. If they don’t respond, she sends it again.
Reynolds suggests taking written information a step farther by including photos of your child. “When people get a file of printed materials, they are looking through a particular lens and don’t see the child as a person,” he says. “Having a picture, they see the child, not as a file, but as a person. Some parents put together a little scrapbook for school personnel, which is really good.”
Jodi Unsworth, founder of the UK support group Caring Matters Now, says that their Web site has literature specifically written for school personnel. She urges you to download these packets for your child’s teachers.
One mom put together a surgery scrapbook, taking photos of her daughter before surgery, after every tissue expansion filling, and after that surgery. “My daughter decorated this book and owns it. She showed it to her class. The kids looked at her scars. It was liberating to her and educational to her classmates.”
Parents talked about all kinds of other things, too, such as how helpful it is to a child with some differences to enjoy the same friends growing up. In addition to living in the same neighborhood and going to the same schools, if at all possible, one mom praised the benefits of organized groups such as the Girl Scouts.
Two of the most creative ideas for raising awareness, perhaps, came from one mom, who had taken 16 teens with very visible nevi to the local Texas mall and wandered into the Apple Retail Store a day earlier. “It offered a great moment to educate and talk about what a nevus was,” she says. “In fact, I think the Nevus teens should do a road trip and go to different cities and Canada to raise awareness!”
But what am I going to say?
Finding the right words is sometimes difficult, but one great strategy, Hurwitz says, involves explaining that your child has a birthmark called a nevus. “Reassure others that it is not contagious and does not hurt. And then use distraction to shift the conversation away from your child’s nevus and onto something else.”
A more thorough description of this technique with great examples of how to put it into action can be found in the support literature for parents under the Resources section on the UK support group Caring Matters Now.
Try not to act emotionally when you respond to questions and stares. In most instances, it makes all the difference when kids or adults know what the nevus is. If you assume most people are decent, they will be decent. On the other hand, if you respond too defensively, your child may accidentally get the wrong message that the nevus is something to hide or be ashamed of. Few people are ugly once they get educated.
“If you can learn to squelch your anger, you will have a happier life and your child will have a happier life,” says one mom. “Remember that your reaction will give your child the skills to respond to others on their own.”
Reynolds reminds the group that people are just looking, because a nevus is so different. “It’s hard on family members and on kids, but it’s only human curiosity,” he says. “Remember how you felt when you first saw your child.”
Therapy can be healing
Repeatedly, throughout the Conference, we heard that participating in therapy with the right therapist was golden. “I’m amazed at what these psychologists really know,” said one parent.
The time has to be right, though. If therapy is unsuccessful when a child is in primary school, for example, the timing could just be off. He or she may welcome this opportunity as a teen or adult. Hypnosis was even mentioned as unburdening one adult with a nevus, who had buried many painful experiences growing up.
Whatever strategies these parents have fashioned in raising children who are different, they appear to be exceedingly successful. Hurwitz, who participated in some discussions with kids and teens in other Conference sessions, found them “a fabulous group: They are fun, soulful, kind, thoughtful, strong, compassionate, and witty,” she says. She also noticed an increased closeness among group members, and especially among siblings, which was more prevalent with kids and teens at the Conference than in the general population. “As Jodi Unsworth said in her inspirational Keynote address, perhaps the strength and resiliency we see in our kids is not in spite of having a nevus, but because of it.”
Allison’s Web site: www.allisonhurwitzcounseling.com