Dylan is very well liked in school so mostly its been more curiosity than anything. Some comments to name a few ... "Why are your eyelashes white? "Whats wrong with your eyelashes?" "Did you color your eyelashes?" "Your eyelashes are cool." and "Your eyelashes are ugly, you should cut them off". < this particular boy on this last comment never has anything nice to say to anyone, so I was not surprised.
I asked him how he was feeling about all the questions and his responses. He said he felt more frustrated and mad vs sad. He said he gets frustrated trying to explain and has often says. "I have vitiligo." When the kids ask whats that? He says, "I have some health problems". Then he just says "oh never mind" because they arent really understanding him and he gets upset. He also said thats why he likes wearing his hat during class, so kids wont notice.
We talked and role played about some different responses that may be helpful. He mentioned one idea of me talking to the class about vitiligo so he didnt have to do all this explaining. Has anyone tried that? Id like your thoughts on it. Im undecided for several reasons.
Some reasons being. Will it take away his ability to address his vitiligo, and handle confrontation? Will it give more attention to his vitiligo then it would have otherwise?
He seemed very excited about the idea. He said, "I wont have to explain to everyone or answer all these questions all the time". I want to help as much as I can. I am willing to do it if thats what he needs. I want to do what is best for him.
Has anyone done that for your child or was done for you as a child? Maybe even the school nurse? Found it helpful? Found it not helpful? What are your thoughts? Id love to get some feedback on this question and/or some other creative ways to help.
One positive outlook is eyelashes can be dyed when he gets older if thats what he chooses. But we have a ways to go for that and is completely his decision. Atleast the option is there.
Thanks
Alysia
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Replies
Christie,
It breaks my heart too!
Tracey,
Thanks for sharing. It seems as though our little ones vitiligo is spreading the same on their face. Seems like your daughters white hair really bothers her too. Its all so difficult to watch this happen. Dylan doesnt like me to talk about it either, Im surprised he wanted me to tell his class. Maybe just from frustration and wanting to get it over with. I think after all of the comments on this post I may go ahead with it next year if thats what he wants.
Hi Alysia,
My son Latif is 10 years old. We talked to his school counselor and nurse and set up a time to speak to the class about Vitiligo. There is a book - Ryan's Vitiligo - that we found on AVF that is very simple and explains what it is and how a child feels if he has it. We read that to the class and then there was question and answer time. The children were very engaged during the presentation. One thing we did not do but my son suggested was substituting his name for Ryan's name when reading the book and personalizing it to incorporate his life. I thought that was a great idea but the counselor did not incorporate. Nor did she incorporate Latif answering the questions when asked. This was about 3 weeks ago and he just went back to school after being off a little over a week for spring break so I don't know if anything has changed. He is/was going throught the same types of things your son is. I don't think it will take his ability to address his vitiligo or handle confrontation. He will still get the questions and have to deal with that but maybe not so much on a day to day basis in class. I do find that after explaining once the questions seem to taper off, I think the children just get used to it.
Marilyn,
Thank you for sharing. I will be sure to check out that book as well. Please let me know how things go with your son in class. Sounds like things went over smoothly. Thats great!
I just re-read your post. I don't think it will take away his ability to handle it on his own, instead I would say that you are now modleing HOW to handle it. He can watch you and learn how to do it on his own. If you decide to talk to the class, I would also talk about things Dylan likes in life... legos, building, cars, whatever. Show how he is LIKE the other kids as well as how he is different. Give the class an opportunity to tell how they are different or someone they know/love is different. Promote uniqueness enough that they want to share differences of themselves and their loved ones. We are not the only unique group in life, I'm sure there are kids in those classes who have a loved one with something unique about them. Boy, I sure wish Paige would let me do this!! I've got all kinds of ideas!
Becki,
Thank you for sharing! I really like the thought process of being the example of how to handle it. Ill run some of these by him and see what hed like to try. Has your daughter had vitiligo long? Seems likes shes got a handle on things at school, thats so good to hear. You have many wonderful ideas. Thanks again!
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