How to help your child

Posted by Harriet Rowe on August 3, 2010 at 11:26pm
Hello all parents
How do you help your child to feel as positive as possible about their vitiligo and to explain it to other children?
All has been fine for my son at his school - his friends accept his white patches and no longer comment on his vitiligo. However with summer holiday activities my son is meeting new children. He is upset that everyone is asking him what these patches are and asking them if he has been burnt. He said noone believes him or knows what vitiligo is, so he doesn't want to explain anything to them. He said last night he feels weird and I can see it has really knocked his confidence. I tried to work out with him what he felt happy saying to a new friend but I don't think he was completely convinced. He is only 7 years old.
Please let me know if how you have helped your child - I am struggling!
Many thanks in advance
Harriet

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Replies

  • Barbara Summers October 7, 2010 at 6:08pm
    Hello, I can help you with this matter, I work along with a group that can get a pen pal for your child. Also they have a summer camp each year. Contact me at barbara2212@verizon.net in subject line put child with Vitiligo so I will know your child has vitiligo and will get you intouch with the group. The group is legal and only the parents make the contact, we just pass on information. This organization is 501(c)3 AND IS REGISTERED.
  • gene durocher August 9, 2010 at 8:22am
    Hi Harriet, My son Pete just turned 9 yrs. old... He says alot of the same things... He is very active and plays sports all the time. All of his team mates dont really say any thing about it. However.. with the sun..It really shows up. He feel s bad when he is asked..He says he tries to ignore the questions because he is tired of being asked about it. Would you want the boys to talk or Email one another ?? Thanks Gene " Rocky"
    • Harriet Rowe > gene durocher August 9, 2010 at 8:05pm
      Hello Gene
      Thanks for your message. I just spoke to my son Theo and asked him if he would like to have a friend to email in the USA (is that where you are?). I told him he loved sports too and also had vitliligo. Theo was over the moon - he said "you mean I am not the only one with vitiligo?". He is very keen to ask him about sports. Shall I get him to send Pete a message via your profile?
      Harriet
    • gene durocher > Harriet Rowe August 10, 2010 at 12:12am
      Hi Harriot,

      ABSOLUTELY... Pete would love to talk to and/or email another boy @ his age. We are in New Jersey.
    • Harriet Rowe > gene durocher August 10, 2010 at 12:23am
      Hi Gene

      Theo has written a message to Pete already so I will send it through your members page.

      Thanks for the good idea!

      Harriet
    • Marty BlackEagle-Carl > Harriet Rowe September 30, 2010 at 11:39am
      kids always think they're the only ones with it, as theyre not as well traveled as adults r.
      good job getting these boys talking.
  • Tracey August 4, 2010 at 2:25am
    I am struggling too right now. My daughter is 5 and is starting kindergarten in a few weeks. In preschool and at home she seemed to not mind the new spots. I kiss the white spots all the time just to make her feel okay about them. And she points out new ones to remind me to kiss them too (so cute, I know they get older and wont let you do that anymore :) ) But this past summer the people keep asking her about her white spots. The ask her what her scars are from and she tells them about vitiligo (but they don't seem to understand). I had a parent ask me if she was a burn victim too. Still everything seemed okay until she went to a new gymnastics place and wouldn't go in the door and asked me if they were going to notice her white spots and what they were going to say. She kept saying that she hoped they didn't notice. I tried my best to hold back my tears. Seeing a huge spot on her face, knowing that they would see it but not knowing if they were going to say anything. It's so hard at this age. Her peers went from not noticing one month to asking her questions the next month. :( Good news is I talked her into to going in and no one said a word about her spots, their attention was on these crazy fluffy shoes she wears everywhere and loved them. She made a lot of new friends and everyone wants those shoes. :) But the truth is I am getting scared with school starting in a couple weeks and her new worry of what people see and say. :( Any help and ideas that have worked for others would be great. It's tearing me up. I just don't know what to do. Thanks...Tracey
    • Sanjay > Tracey September 30, 2010 at 10:42am
      my daughter is 5 and she also has the spots on her hands and feet but she is completely oblivious to the spots and lives her life as a child should. At one time at age 3, she was almost 60% white with her face completely depigged, but thanks to a wise derm, who put her on a short term steroid therapy and she recovered most of her pigment and now it is only on her hands and feet but they are not going anywhere. My son who is 11 also has it on his ankle but not on visible areas.

      We never discuss vit at home as I do not want vit to become an all consuming issue for them. they do apply their meds and expose to sun for 2-3 minutes or so, but they are so used to it now that it is a non issue. They have seen me getting rid of spots through depig and know that if things really go from bad to worse, there is a way out of this. Till that point they need to concentrate on better things in life. Undue stress is not healthy for small kids and I am glad they are not stressed about it. cheers ,, sanjay
    • Harriet Rowe > Tracey August 5, 2010 at 2:37am
      Thanks to both of you, Tracey and Jane, for your kind words of support and advice. Vitiligo is a challenge for the kids and for us too, isn't it?
      We just get on with things most of the time and things seem ok but in the summer when my son's skin gets darker (he is mixed race) it shows more and becomes more of an issue.

      We are off to Germany in October to try the pseudolactase treatment. My friend lives near there and suggested it. I have no idea if it will work but sometimes just doing something makes you feel more positive.

      Good luck to both of you and your lovely children

      Harriet.
  • Jane August 4, 2010 at 1:52am
    Hi Harriet. We experience the same struggles with our 7 year old daughter. As with your son, kids at school who know our daughter no longer comment on her white patches. They just accept her as she is. However in situations with new kids (especially summer), she starts getting comments again. There was a period where she really let it bother her, refusing to talk about it with anyone. However now she seems to be getting more comfortable. I wish I could attribute it to something we've said or done, but I can't say for sure. I do periodically ask her how it's going and if anyone's asked her about it lately, and we discuss how she feels about talking to others about it. Once in awhile she says she wishes she didn't have her white patches, but it isn't as often as it used to be. Coincidentally, she was at that hairdresser's yesterday and the lady cutting her hair asked about it, because she noticed the white hairs on our daughter's head (she doesn't have many, they're mostly underneath the back of her head). I explained to the hairdresser about vitiligo and our daughter seemed fine with the discussion. We commented that her skin is like a beautiful "painted horse", all brown and white together. In our daughter's case, she is caucasian so in the fall and winter months it is less noticeable and she gets a little break from most comments. Sorry I can't offer you more wisdom, it's a struggle in our house too and we just take things as they come. We try not to make vitiligo a big focus, and at the same time we don't ignore it either. We tell her that her vitligo is only one aspect of what makes her a unique person, and there are so many other things about her that make her the special person she is.. So far it appears our daughter is pretty strong headed and doesn't let any comments from kids stop her from doing what she wants to do. We hope that will continue, but know things could change at any time. We'll be there for her either way, talking, sharing and doing whatever we can to help her be the person she wants to be. I find comfort just knowing there are other parents out there trying to work through this with their own children, so we are not alone. I also take comfort in knowing vitiligo is not a more serious health condition, and have discussed that with our daughter as well, explaining that there are children in the world with health issues that prevent them from doing the things they would really like to do. We've talked about how lucky she is that her vitiligo doesn't stand in the way of all the activities she loves (dance, swimming, biking, etc). Hang in there, I know it is tough and I'm sure you're doing a better job with your son than you realize. Try not to be too hard on yourself.
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