The new school year is approaching fast and while most parents seem to be worried about purchasing the required school supplies, I’m consumed with an entirely different set of worries that come with having a child with vitiligo: Will other kids stare at my daughter – or even other parents? Will she be too nervous and anxious to show her amazing personality? Will kids ask her why she has spots? How will she respond to everyone’s reactions? Will kids not want to play with her because she has these white patches? Will her teacher be there for her?
If you’re the parent of a child with vitiligo you probably share my concerns. Sadly, there are no fixed answers or established solutions for these worries. However, there are other parents, children and so many advocates who have come together to create this Back-to-School Handbook to hopefully lead parents like me to be the best support and guidance for our children as they bravely step into another school year.
This Back-to-School Handbook has been created to provide practical and emotional support for parents and kids with vitiligo heading back into the classroom this fall. We’ve packed the guide full of authentic parent experiences, advice from experts like authors and counselors, and hands-on tools to help you and your little one through the school year. It’s our hope that Living Dappled and this handbook will continue to be a resource and place where parents of children with vitiligo can find comfort and unity, knowing that we’re in this together.
Julie Hartley, Parent of Leah, an 8-year-old girl with vitiligo
Erika Page, Founder & Editor-in-Chief of Living Dappled
FEATURING AUTHOR LORI MITCHELL
While most parents worry about school supplies and bus schedules, parents of children with vitiligo have a whole different set of concerns when it comes to the school year. Author Lori Mitchell knows those concerns all too well – because she has a daughter with vitiligo too.
We talked to the author of “Different Just Like Me” about her advice for parents of children with vitiligo and here’s what she said.
Parent’s Panel: Back-to-School Q&A
Are you worried? Is your child worried? Will you talk to the teacher? If you’re the parent of a child with vitiligo, you probably have a million things to think about as you approach the school year. And maybe you want to know what other parents facing the same thing are thinking. So we asked nine parents of kids with vitiligo a series of back-to-school questions. Here’s what they told us.
How Journaling Helped
My Child with Vitiligo
WRITTEN BY JULIE HARTLEY
Coping with fears, anxiety and self-doubt is difficult for anyone. But when you’re a child with vitiligo, it can be particularly hard to express such intense emotions.
Julie Hartley, mother of an 8-year-old girl with vitiligo, understands this well. After a touching exchange with her daughter, Julie discovered the power of journaling in helping her child share emotions and talk about the things she’s going through.
Reading with your child can be a great way to create space for conversations about things like differences, anxiety and bullying. This collection of books for kids and teens covers topics including vitiligo, anxiety and overcoming fear.
Real Talk: Moms on Going Back to School
How does your child explain vitiligo to other kids? How do you prepare them to talk about their skin with other kids?
Do you plan to address your child’s vitiligo with other parents, teachers or administrators and if so, how?
If your child has experienced bullying before, what kind and how did you respond to both your child and the teacher or school?
Real Back-to-School Letters
Let’s get down to it – how do you actually go about talking to your child’s teacher about his or her vitiligo? These moms shared their letters so you can see real-world examples. The first is an email letter from Julie Hartley to her child’s third grade teacher. The second is a letter that Lori Mitchell sent home with her daughter’s classmates when her daughter was younger – April is all grown up now! You can find more about Lori’s letter on differentjustlikeme.com.
Letter from a Mom to a Teacher
Hi Ms. Smith,
It was a pleasure meeting you last week at “meet the teacher” Leah is excited to come back to school!!
I just wanted to give you some information on Leah that I thought would be appropriate to know and understand prior to school starting. She has an autoimmune disease called Vitiligo. It is were her body’s own immune system attacks itself and in her case it attacks the pigmentation in her skin. Depending on what she is wearing she has white patches noticeable on her knees, small ones on elbows and fingers. Also some that are started to regain color on her neck.
She is pretty comfortable with herself and we’ve talked about kids being curious and that being ok. I’ve let her decide what she wants to tell the kids if they ask. Usually she’ll say she got it when she was 3 it doesn’t hurt her. or she has said something related to diet since we have changed her diet. Saying she has Vitiligo probably wont make any sense to an 8 year old.
She has yet to have to deal with kids being mean to her because of this. However she said to me last week…”people may think I am weird because I have Vitiligo” we chatted just about some kids being mean for any reason and to let an adult know if someone has said something that was not ok. I am hoping we never have to deal with it or that it wont happen but in case it does and you hear or see anything if you’d let me know. I’m trying to anticipate the best way to handle it.
Sorry for the intensely long email. Hopefully though you’ll better understand her a bit. I have not mentioned this to Ms. Tyler but if you feel its a good idea that other faculty know please feel free to pass along this email or I can speak directly with whomever.
If you have any questions about anything I didn’t cover in my ridiculously long email (HA) please let me know!!
*Names have been changed to protect identities.
Letter for Students to Take Home
Hi my name is April,
I am in your child’s class (or I will play with your child on the playground).
I like to draw and paint. I have a really soft, playful cat named Gizmo. I love to go swimming and my favorite food is macaroni and cheese, and mint chocolate Chip ice cream.
I also have Vitiligo. Vitiligo is a loss of pigment in my skin. It looks like white patches or “clouds” on my skin.
I’m a little shy at first so it’s hard for me to talk about it at times. Kids ask me a lot of questions about it so I thought I could give you the facts about Vitiligo so that you and your child will know about my condition.
• Vitiligo is not contagious
• It doesn’t hurt .
• I started with brown skin and it is slowly turning white.
• 2% to 5% of the population has Vitiligo.
• There is no safe cure for Vitiligo yet.
• It doesn’t affect me in any other way.
If you know of anyone with Vitiligo, you might want to let them know that we have found a couple great resources via the Internet at http://www.vitiligosupport.org and http://www.vitiligofriends.org/.
Free Download: Vitiligo 101 Handout
Vitiligo can be hard to explain, so here’s a one-sheet handout with ten fast facts about vitiligo that you can hand your child’s teacher or school administrator.
VITILIGO 101: FAST FACTS
A one-page handout with ten fast facts to introduce people to vitiligo.
Vitiligo Pen Pal Patch
SPONSORED BY VITFRIENDS
Looking to connect your child with other children with vitiligo? Look no further. Pen Pal Patch is an outreach program hosted by VitFriends where children with vitiligo are paired with a pen pal and can mail letters, send pictures or face chat.
“As a parent of a child with vitiligo, I’ve seen first hand how different kids can feel once they start realizing not all other kids have spots,” said April Sawyer, the Children’s Division Director at VitFriends who created the program.
“My hope is that Pen Pal Patch will build a bridge of friendship among our children with vitiligo. I want Pen Pal Patch to be a positive support system for my daughter and all children dealing with similar issues. This will be their space to express themselves and to build real lifelong friendships.”
Today the program has sixty children enrolled. In addition to being matched with a pen pal, families that join the program will have access to a private Facebook group where kids can get to know one another. In order to ensure safety, the group is secret and admission to the group and conversations within the group are closely monitored. Families can also opt into the Big Vit – Little Vit program that connects kids 3-5 years of age with a child over the age of 10 who can act as a mentor.
To join the program, send April an email at email@example.com.
One of the largest vitiligo support group networks in the U.S., VITFriends was launched in 2009 to support and enhance the quality of life of those affected by vitiligo through networking and education.
What do you worry about most when you think about your child going back to school?
“Different Just Like Me” Downloads
BY AUTHOR & VITILIGO MOM LORI MITCHELL
Author of the children’s book, “Different Just Like Me,” Lori Mitchell – who is also the parent of a child with vitiligo – has dedicated her career to writing and illustrating books and helping parents of children with vitiligo deal with the condition in schools. Today she speaks at schools and shares lesson plans on how to decrease bullying by increasing conversations about diversity.
Here are some of her resources and downloads for incorporating the book into the classroom:
Thank you to the following people and organizations that made this handbook possible:
Erika Page, Living Dappled
Julie Hartley, Living Dappled
April Sawyer, VitFriends
Lori Mitchell, Author of Different Just Like Me
Generous parents of children with vitiligo
Amy Alexander, Story Collaborative