Replies to This Discussion

Permalink Reply by Jen Deletto on March 17, 2010 at 7:23pm

I got The Girl with No Hair from my local library actually. It's very reassuring once you do talk to the school staff - i felt a huge weight lifted off of my shoulders after I did!

Permalink Reply by june edwards on March 18, 2010 at 4:14pm

thanks have got a borrow of a book but will probably buy one as think it is really good. she was five and had a fab day

Permalink Reply by Jen Deletto on March 21, 2010 at 9:25pm

I believe that you can also get the book through Amazon.com

Permalink Reply by Jennifer M. Nielsen on March 21, 2010 at 5:44pm

What is the actual children's alopecia website? I have a son who will be entering K4 in the fall and I'm looking for sample letters. Thanks!

Permalink Reply by Jen Deletto on March 21, 2010 at 9:25pm

http://www.childrensalopeciaproject.org


They have great sample letters on their site!

Permalink Reply by BRANDY GOOGE on April 1, 2010 at 9:31pm

HEY BRANDY HERE .. WANTD TO SAY HEY MY LIL GIRL IS 7 AN SHE GETS TEASED ALOT ALSO...I CRY MYSELF TO SLEEP EVERYNGHT ITS SO HARD...I DNT KNW WHAT TO DO AT TIMES....HOPE IT GETS BETTER

Permalink Reply by june edwards on June 8, 2010 at 3:45pm

i find it hard when she gets teased the child psychologist said that the more we have control over our feelings iie not to let isla see how much it bothers us the more positive she will be and it does seem to work We are working on her self esteem and on the whole she is very confident and fiesty however at times ahe will look in a mirror and say she isnt happy because she is bald and doesn't always belive us when we say she is beautiful. her biggest thing will be starting school in august and she is excited but scared as she thinks people will laugh at her or tease her , we just keep going and support her if and when she needs it.

Permalink Reply by Sara and William on April 3, 2010 at 12:58am

I guess we've been lucky. I don't think William really gets teased. Sometimes he comments about not liking to be different, but the kids don't really say much anymore, it's just who he is. They did ask when he first started losing his hair. Teachers aids, other parents, they were harder. They were all sooooo concerned, and would come up and whisper "Is he ok?????" and were obviously thinking cancer. Sometimes they were discrete, and sometimes William could not possibly have missed it. For about 6 months, I hated going to his school because SOMEONE would always ask. But now....it's just him. I guess in the end you can get used to almost anything, right? I worry about Middle school, but for now, it looks like we're going to skate by without any real problems.

And there wasn't anything magical. William didn't want to show the video we got from our local support group, didn't want me to send letters, or anything else. I thought it was important that he feel he was in control, so I followed his lead. Guess he knew best in the end:)

Permalink Reply by Evie and mom Gail on November 23, 2010 at 10:52pm

Hi June, our daughter Evie also has alopecia universalis, since she was 10 months old. For school this year we wrote a letter for all the parents of the kids in her class to tell them she is not sick and is not a baby (this is what many younger kids say to her) and that she needs to have help sometimes in telling kids not to stroke her lovely bald head, and how to answer when people ask why she doesn't have hair. WE have given her some lines to say when she is teased, like it's only hair and it doesn't really matter, or I'm beautiful without hair, or to say that everyone is different. Kids in her classes have always embraced her and she has friends, but it can take a bit of time at the start to feel comfortable. I also find the problem is more with older kids, and those who don't know her. We posted a picture of Evie in the staff room and asked other teachers to keep an eye out for teasing, to help her. She doesn't wear hats or wigs, except for fancy, or when she is feeling like the new kid. I hope school is gong well for Isla. All the best, Gail

Permalink Reply by Amanda Crichton on December 29, 2010 at 5:43pm

Hi June, not sure if this is of any use...but the school I have enrolled my daughter at for 2011 let the whole school know what her condition is, so they understand why she is wearing headgear that is not uniform regulation...and stops any teasing etc The head girl for 2010 here at this high school, has the same condition and that is how they dealt with it...
she was there for 4 years and the children were very understanding. Maybe that is something to think about, if the children know about her then maybe it will make a difference...that is what this school found. All the best

Permalink Reply by Debra (twin mom) on January 13, 2011 at 1:35pm

I think that sometimes it hurts more as a parent than it does the child. My son is 4 and is in Pre-k. It doesnt bother him at all, but he is also a boy, so I am not sure as to the impact on a girl :(. My son's derm said that it is less psychologically affected in a child, as compared to a teen who begins the condition. Listen to your baby, she'll let you know :)

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