Here is a list of some of the things that helped April and me when she was growing up. A lot of them could be used for any situation, not just vitiligo.
1. Find ways to see the positive
When April was about 6 years old the spot on her back looked like a snowman. We had been looking at it in the mirror before school. I grabbed my paints and added a scarf, coal eyes and buttons, a top hat, carrot nose and stick arms. April loved it and went off to school with a huge smile and her own little secret. She showed her closest friends at school and just felt kind of special that day.
On another occasion there was a boy at the playground that said April's skin looked like chocolate and vanilla. Instead of taking that as an insult she made up a superhero that was called "Swirl girl" that looked like a chocolate and vanilla ice cream cone. She had this idea for a long time and finally drew what the superhero would look like.
2. Let people know the truth
It’s important to let the kids and adults, that will be around your child, know about vitiligo. Just answer any questions as honestly as possible. With April, kids just wanted to know that they wouldn’t catch it. After they were reassured, they played and never had a second thought about it.
3. You're not alone
I think April felt she was the only one that had vitiligo and that made her feel even more different. We found a support group on the Internet and she had “pen pals” from all over the world. We had a big map with everyone marked with a flag so she could see how many others there were all over the world. We also went to the vitiligo conference each year so she could meet, face to face, with others her age. Now there are websites and support groups online where kids can see there are others out there that look just like them.
If you are in the Los Angeles area there’s a wonderful group called More Than My Skin that meets from time to time. This is their mission statement. “ This project was born to bring together people in the vitiligo community. We are a network of powerful individuals, of all races, genders and ages. What we have in common is the unique physical beauty that is called vitiligo. You are not alone." Or check out Vitiligo Support International to see when they will be having another conference. They also have a support page with people in different states.
4. What to do to help your child fit in
I knew April would be starting kindergarten soon and she wouldn't know anyone at the school. I figured she would do better if she knew a few kids before she started. I put an ad in the small local paper about the new playgroup that was starting for all prekindergarten age kids that would be going to her school. The group met once every couple of weeks at the park. When April started kindergarten she knew several kids in her class and felt comfortable. She went all the way through to middle school with those friends and she still keeps in touch with them.
5. What to do on the first day of school
We went to orientation day for kindergarten. I had talked myself into thinking no one would notice April's spots because I was so used to them. Well, not only did her classmates notice, so did their brothers and sisters and moms and dads. There was a lot of pointing, wide mouth gasps and whispering. I went home and cried. Once I got that out of my system, I took action. How could we let everyone know about her vitiligo without singling her out and embarrassing her on her first day? We could send her out of the room and I could tell everyone, but that felt wrong and we felt it might send the message that she was ashamed of her skin, or that it had to be a secret. We decided to dress April in tights and long sleeves to cover as much of her vitiligo as possible on the first day. We sent a letter home with all the parents. It was told as though April was telling it. It detailed what vitiligo was, and what it wasn't, and April signed it. At the top it asked that they discuss this with their child and it had a photo of April's face. It didn’t just say that April was the girl with the skin disorder, it also listed her favorite foods and TV shows and it talked about her cat. That way it was more about her as a whole person. It seemed to work. Most of the kids just played with her and didn’t even ask about it. I also went to the school nurse and gave her some information and we talked it over so I knew she understood.
6. Stay involved at school
You can’t just talk about it at the start of kindergarten and then expect everything to be ok until 5th grade. April still had comments and teasing from time to time so we kept up the education. I talked with the principal and always keep in touch with April's teachers. One year I even went from class to class with our book, Different Just Like Me, to talk about how we can all be different but so much more alike.
7. Start a program of respect
There was a program of RESPECT at the April's school. It was very nice to see that the teachers talked about respecting others and really enforced it. They would not tolerate any teasing or name-calling. You could volunteer to talk to the students every other month or so and bring a project for them to work on. Maybe other parents might want to join you. At there's a 5-day lesson plan, coloring book pages and games to play. They are all free to download and easy to use in the classroom. The lessons are all about acceptance and diversity. Some lessons will need the book Different Just Like Me, which is usually available through the library, but many lessons can be used on their own.
Parents could put a note in the school newspaper and ask for volunteers. There's bound to be other parents that would like to see a program of respect in the school. They could all meet once and talk about ideas of what to do each month in the classroom and each parent could pick a date to go in. That way they would just need to have one day each year. They could use my games and lesson plans that are all very easy to follow, if they need help thinking of an activity.
Another idea: I invited Jeanie, a woman from the Braille institute to come and talk with the students. You can talk to your local Braille institute and see if they have any outreach projects. Jeanie and her dog snuffer were a big hit.
8. Follow your child's lead
April has always had a mind of her own. She wears what she feels comfortable in, like tank tops and shorts. At first, I wanted to tell everyone that was staring to STOP. I wanted to give them a dirty look, at the least, but I also wanted to educate them about vitiligo, but I could see that sometimes that made April uncomfortable. Her way to deal with it was to just ignore the stares, so I had to honor that. I asked her if she ever wanted me to say anything and she said sometimes it's okay. I tried not to pester her. I sort of figured out her body language as to whether she was uncomfortable or if she wanted me to step in to say anything, but I tried to take her cues. I wasn’t always going to be there to “fix” things for April so I wanted her to know she could deal with any situation on her own. I didn’t want her to see me as her protector. I wanted her to know she had the power to deal with whatever came along. So instead of just stepping up and telling people what vitiligo was or me giving dirty looks, I had to ask her what she wanted. How did she want to play it? I wanted her to feel like she was in control.
Eventually when someone stared, I would look them right in the eye and just give them a big smile. If I were to glare at them it would have given April the signal that there was something really wrong, and it felt very negative.
9. Don't always put the vitiligo first
I was a little concerned when April went to Girl Scout summer day camp in shorts and a T-shirt with all new girls that didn't know her. After camp I was dying to ask if anyone had asked about her vitiligo, but I didn't want that to be the whole focus of the day. I figured she would tell me if anything had happened when she felt like it. It turns out that no one said a word about it the whole day. (I just love those Girl Scouts).
10. What to do if your child is tired of explaining
We had been shopping at the mall and had about 6 different kids giving her "the look" throughout the day. It was more than usual and for the first time she hid behind me. I asked what she wanted to do. I didn’t want to solve this problem for her (as much as I wanted to), I wanted her to process her feelings about it so she would be able to face any adversity in the future, on her own. She didn't want to talk to each one because she figured we would have been there all day. She came up with the idea of handing out cards explaining her vitiligo. Brilliant! Ok, I asked what she wanted to put on these cards. They had the Vitiligo Support International web site on them and she added, "I'm just like you, I just have two colors of skin and it’s not contagious.” We went to Kinko's and she picked out the colored paper she wanted to print them on and she cut them all out. At home she put on colorful stickers to make them more fun. She brought them to one of her summer camps where she wouldn't know anyone. They were a big hit. All the girls wanted one and I think they actually read them. I think being able to give out the cards made her feel like she had a little more control over the situation. I kept the cards in my purse and if someone was staring or asked, she could give them a card, if she felt like it.
11. Let yourself and your child be sad about it sometimes.
April has visible signs of vitiligo from head to toe. At first it was a shock to find out about her vitiligo. The first doctor said it wouldn't spread. Then it started to spread everywhere. It began as one small spot. I started to panic. We went to so many doctors and spent so much money. We tried almost anything that was considered safe to try. I have gone through my ups and downs. I cried sometimes in the beginning (not in front of April) I talked to close friends and family just to get all the fears out and it always made me feel better just to say stuff out loud to a trusted friend. I used to just try to hold it all in and tell myself not to be "a big baby," but then the pressure would build up. If I could let off steam every once in a while and admit that it made me sad sometimes, then I could go on and I really was okay. If April told me she didn't like her vitiligo, I would try not to talk her out of it. I would just listen to her and try to empathize. I didn't want her to think she had to be happy about it all the time. I wanted her to know it was okay, even normal, to feel sad sometimes. We eventually came to understand that living with vitiligo was going to be just fine, but we had to process our feelings, really feel them and express them, first. Now we don't really even think twice about it.
12. Try to be here NOW for your child
I used to worry about what would happen to April in the future. All the "what if’s" would keep me up at night. I would imagine April going all the way through from middle school and dating, to marriage and what would happen if she wanted kids. Would they have vitiligo too? (There’s only a 5% to 7% chance that her kids will have vitiligo) Then on to what would happen with them and so on. I would be so distracted I wouldn't be focusing on what April needed right now. So I tried to stay in the here and now, for April's sake. I had to keep telling myself that she's okay right now and she will be okay in the future, I just couldn’t take up our present moment by worrying about things that probably wouldn't even happen in the future. Now I can see that if she has kids with vitiligo she would be the best parent because she knows how to deal with it in a very healthy way.
13. Role play
April and I talked about what to say if someone asked about her vitiligo. We would do a little role-playing to act out how to respond if anyone asked her about her vitiligo. Sometimes I would pretend to be her and she would call me a name she has heard or she would just ask me about my skin. Then she would play herself and I would ask her about her skin. We would get pretty silly sometimes and I tried to keep it light, not too serious. It just gave her a chance to practice how to respond with a truthful, simple answer. She came up with… "I just have two colors of skin. I was born this way."
The point of "Role Play" is not to come up with the one and only perfect reply to any teasing. There will be different situations and your child will have to think on their feet. The point is to have the discussion with your child before the bully does. The bully will zero in on any shame the child might be feeling. If you can role-play and have an open, honest discussion, that shame is diminished, if not totally dissolved.
I remembered some of the silly things we would say in role-play. Sometimes we would use stuffed animals as the bully and as April. I would be the bully and say that April was a tomato. She would laugh. I asked if she thought she was a tomato and she would say of course not. The point was that anyone can say anything, it doesn't make it true. Only if you accept it and decide they are right, can it hurt you. We had to practice so she would know that she wasn't any of those things that anyone called her. We talked about how much her family and friends loved her, just the way she was. We also talked about the bully and some of the reasons they might be teasing her. It could be that they were scared of catching vitiligo. It could be that they were being teased at home or they don't feel good about themselves. And that their behavior is very rarely anything to do with the person they are teasing.
14. Let your child figure out what to do
April seemed to tell me if anyone had said anything about her vitiligo and I would try to just listen. I tried to let her figure out what she wanted to do. I think that helped her to feel like she had more control. If she asked for ideas, of course I would try to suggest something, but she would need to be in charge because I would not always be with her. In first grade a second grader pushed her and called her a name. I let April tell me about it then asked "What do you want that girl to know?" She said she wanted her to know she didn't like it and didn't want to be pushed anymore. She's usually quiet and a bit shy, so I worried whether it would happen again. I was making plans to go up to the school and talk to the girl and the teacher of the girl that pushed her. Just as I was leaving to go up to the school, the phone rang. It was April. She said she had gone up to the girl and told her not to push her any more because she didn't like it. Her teacher was so impressed that she let April call home to tell me. That girl never bothered her again.
15. Get involved
Sometimes I would feel completely out of control over this condition. What could we do? We ended up writing and illustrating the book Different Just Like Me and 10% or more of my profits have gone towards vitiligo awareness and research since the book came out in 1999. I also have been going to schools, from elementary school all the way up to child education classes in college, to talk about diversity and acceptance, along with education about vitiligo. I try to step up where needed and it makes me feel like at least I'm part of the solution. So if you ever feel helpless, just contact Vitiligo Support International (https://www.vitiligosupport.org/) and ask what you can do. There's always something, even if it's just sending in a check.
16. Change the subject
Sometimes when people asked about April's vitiligo she would answer but I could see she wanted to change the subject. April had her pen pals from all over the world, so that gave her an easy segue into talking about how cool it was to know all these kids from other country's. She could turn the conversation around so she was talking about something positive that had come because of her vitiligo.
17. Let your child know they're okay just the way they are
We never tried to cover up any of April's spots. First of all it would be almost impossible. Second, it would be telling her there was something wrong with whom she was. She was and still is a beautiful girl and there's no reason to hide, or keep any secrets about whom she is. We took pictures of her often (maybe too often) and had photos of her all over the house. If she ever chose to use make-up or cover-ups we would help her in any way we could to find what was right for her, but it would be her choice.
There was a 10-year-old boy on the vitiligo support list several years ago that tried to hide his vitiligo. His parents thought it was best and he would fit in better. They tried make-up but on an active boy it would drip and run. He would pull his sleeves down and try to hide the make-up on his hands. His whole body language was one of shame. He was thinking about his vitiligo and how to keep it covered all day, it was difficult for him to focus on his studies and his grades went down. Soon he had kids whispering about his skin. Because they didn't know the truth about it they assumed the worst and even made stuff up. They teased him and then started to beat him up. It got so bad he needed to change schools. He and his parents decided to come right out the first day and explain his vitiligo at the new school. He was fine from that day on and made friends and could focus on his studies.
18. Start your own list of what you love about yourself.
I met Jono Lancaster at an online conference. Jono has Treacher Collins syndrome, a genetic disorder that affected the way his facial bones developed. He was sharing some advice with the kids at the conference about what helped him to feel good about his looks and what helped him have more confidence. He had a hard time with being teased as a kid. When he was in his 20's he was at the gym working out and he would avoid looking in the mirror at his face. One day he looked at his new sneakers in the mirror. He was admiring them when he started to look at his legs and he thought, "hey I have good legs." His eyes moved up and up and finally got to his face, he was thinking he was looking pretty good after all. He liked his legs, his smile, his hair and even his butt. He decided to keep a journal with a list of things that he liked about himself. Each day he would write down a few more things. He would write down that he liked his dimples or the way that he had been kind to someone and so on. The list started to grow longer and longer. He figured out that this list was all his. No one could take it away and these were things that he loved about himself, no matter what anyone said. He could always go back to this list and remind himself of his good qualities.
You can follow Jono on Instagram @jonolanc