The Congenital Nevus Support Group
PO Box 305 West Salem, OH 44287 (419) 853-4525 (405) 377-3403
web site: www.nevusnetwork.org e-mail: email@example.com
Number 3 Se parle francais. Se habla espanol. Sprechen sie deutsch. Fall, 1992
Growing-up Tips Offered for Parents and Kids
Growing-up Tips Offered for Parents and Kids
After living with a bathing trunk nevus with over 500 satellites for 36 years now, BJ feels ready to offer her personal list of growing-up tips. So here goes.....
1. Always verbally describe the child's skin in positive terms. Moles, excised or not, can become "angel kisses" or "fairy kisses." Avoid "dirty spots" or "animal skin," please! The nevus can become "special" skin. If it is excised, then the "special" skin needs "extra special care" by the doctors to become even better!
2. Address others' anxieties to decrease the amount of staring. Tell other kids, "Susie has a special skin condition. She was born with it. It doesn't hurt her. It won't rub off. It's not contagious or infectious." Let them touch if they want. Children are quite accepting once their curiosity has been satisfied. Over the years, I've found that people stare at me less, or maybe I accept it better!
3. Dress the child appropriately, neither over nor under covering. I was covered completely as a little girl. Most people never knew exactly what my skin was like. The constant hiding made me feel so ashamed. I personally feel it is better to slightly undercover when young so that the family, friends, and school can gradually come to accept the skin as a normal part of the child. That way the child has the option of covering or uncovering as a teenager. Experiment to see what works for you and your child.
4. Dress the child fashionably, attempting to blend them in with their peer group. Let the children choose their own clothing when possible. Children will automatically pick what makes them feel good about themselves. One or two outfits in style are better than 10 out of style. My mother insisted I wear anklets while the other little girls were wearing knee socks in grade school. I felt self-conscious about my hairy, mole-covered legs and still remember the pleasure of sliding on my first pair of knee socks bought with my own money in 4th grade! I feel conformity in minor things such as hair and fashion may help a child to fit in better with a group of peers, thus decreasing teasing and heckling. This, in turn, will hopefully help a child to resist conformity where it counts, such as involving smoking, drugs, or sex.
5. Consider early swim lessons for your child, well before age six. I use a regular swimsuit at the adult health club & a unitard at the neighborhood pool to avoid scaring all the little kids out of the pool! T-shirts work well for boys. Another fashionable alternative would be a Lycra diveskin designed for warm-water scuba diving, which covers from neck to ankle. Use sunscreen and avoid the hottest part of the day or try to swim in the shade. Consider using sun protection clothing such as Sun Precautions, at 1-800-882-7860. As a little girl, I wore a homemade bloomer suit and had a great time learning to swim with my brothers. I stopped swimming in my teens because I did not have enough body comfort to cope with the boys staring at me. I started to swim again in my 20's and eventually earned a Red Cross Water Safety Instructor certificate. I still swim laps once or twice a week and have for the last 15 years now. Diving into that clear, blue water makes up for a few stares!
6. Encourage your child to stay fit and develop a strong, muscular body. It's a great boon to self-esteem! Make exercise a family priority. If anyone is overweight, consider going to Overeaters Anonymous, listed in the White Pages. Weight training might be a good idea. A 99-pound person who becomes a strong 105 pounds has higher self-comfort and receives more respect from his/her peers. The weight training can be as simple as doing pushups or lifting books in the family room. I was seldom physically bullied as a child because I was strong and muscular from daily farm work. My parents also encouraged physical exercise.
7. Avoid criticizing your children. Instead use positive reinforcement. Avoid permitting other siblings to heckle the child with a nevus. One of my siblings teased me about my skin while we were growing up. I felt so embarrassed by it at the time.
8. Minimize school transfers when possible, especially in the crucial middle and high school years. It may take a boy up to a year and a girl up to 2 years to re-establish a group of friends after a school transfer. I changed schools five times during my 13 years of secondary schooling. Because of that, I was never able to make/keep any long-term friends.
9. Consider obtaining medical excuses for certain activities when necessary. Try listening to your child and let the child be your guide in your decision-making. Different children will have different tolerances for various situations and many decisions will be a matter of trial and error. I suffered through the embarrassment of gym class and shower for 2 years because it never occurred to me or my parents to get a medical excuse for gym. Sometimes the best way to get through something is to go around it!
10. Talk to others, such as teachers, counselors, doctors, and the Nevus Network. Provide an opportunity for your child to talk to others about their skin without you present. Raising a disfigured child may have been easier for my parents if they had asked for help and ideas from others. Fortunately, birth defects no longer need to be hidden, as they were even in the recent past when I was growing up.
11. Tell your children equally how cute, pretty, beautiful, handsome, and wonderful they are, whether they have a nevus or not. One of my siblings was often called cute, while I seldom was. It is only recently that I have become comfortable with my body and with how well I really do look.
12. I'm living proof it's possible to have a fairly happy childhood and an even happier adulthood with this skin condition! Sure I had a lot of rough times growing up, but overall I did fine. I survived! I can honestly say that life keeps getting better. I hope my tips will help give you or your child a happier life. And please send us your own personal list of growing up-tips!
--BJ, with input from Kelly.
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Thanks to all of you who wrote or sent donations, especially Randi C. and Shaun R. Every little bit helps to buy more postage! We need articles for the next newsletter. Do send us address changes so that we can keep our mailing list up to date. We gladly welcome new members. Just contact us at the address above. Send us your name, address, telephone, e-mail address, and name, birthdate, and brief medical description of the person with the nevus. There are no dues or fees to join, although donations (made payable to the Nevus Network) are gratefully accepted. -- The Editors - Kelly & BJ
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The opinions expressed in the Nevus Network Newsletter are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. For any medical advice, please consult your own personal physician. This newsletter may be photocopied without permission for support group/patient information use.
© 1992 Nevus Network Reprinted 2004