Replies to This Discussion

Permalink Reply by Miranda on April 1, 2008 at 12:43pm

Cindy, I think that I am going to inform at least her class, and I've already talked to her principal. I know when I was in school here the kids were so judgmental about everything. Especially appearance as you got older. I completely relate to everyone else that believes that teasing is brought on by not knowing. I think that since Della isn't going towards the route of covering it up, her classmates should know. I don't want her to be teased because she looks different, nor do I want her to be treated as if she is ill, and defiantly want her to have a similar experience with kindergarten that her sister will have with friends and other social things. I want her to be treated normally, and I feel that kids her age get most of their ideas from how their parents would deal with something. So, if her classmates were taught about alopecia, and their parents, then they would realize she is normal, but with less hair. I think that if I were to help her break that barrier sooner than those good friendships would develop faster and without the pressures of not knowing. I also think this way when sleep overs start, it's less stress because they know. Or if she does start liking her wig, then if it falls off, then they know. I just think it makes everything less hectic in the long run. So, when August comes around I am going to notify the classmates and their families for sure.

Your case is a little different because Samantha loves her wig. So, she has a good cover up. But Della hates it, so I right now it's something we are going to have to make aware. I wish that I could tell everyone before they see her because then it might stop the double takes and the "poor thing" comments and what not at the grocery stores, or parks, or swimming pools, etc. I think all of that makes her feel even more different than she already feels, and alienates her from being classified as healthy and normal.

Permalink Reply by Brandy Forsch on April 2, 2008 at 10:21am

I can tell you from my point of view from having Alopecia since I was 17 months old that my classmates knew from the time I was in Kindergarten untill I graduated Highschool and even in College. My mother told me stories of me in Kindergarten getting off the bus with my wig in 1 hand and my hair in the other and the wig tape still on my head!! (LOL). She can teach her classmates about it and they will then I think not pick on her as much bc of it. Yes she will still get picked on in school but atleast she will know that she did her best to inform them of her hair loss. She is stong and I am sure a very happy child, this time in her life will make her a stronger person and you might be surprised how the other children will take it. I know from my experience kids in highschool were worse then kids in elem. I would love to chat more!

Brandy

Permalink Reply by Siphnaki on April 5, 2008 at 8:43pm

Cindy,
We have informed the staff and parents of the entire school about our daugther's loss and the school fully supported and even recommended it. Our daugther does not wear a wig but has gone back and forth with hair coverings. I truly think getting it "out of the way" was a tremendous help. Yes it brought attention to it but it was a controlled one-time thing and then everyone got on with things and she has been doing fine (now in 2nd grade). I think it is liberating and one less thing to have to hide or worry about on her part. The support has been wonderful too and it has been empowering for all of us.
Siph

Permalink Reply by Mommy on April 12, 2008 at 11:09am

Hi,

The need to tell others probably varies with the situation. Since your daughter wears a wig I could understand not feeling the need to tell many people about it. They may never notice and it really isn't an issue. Just sharing with the people you feel comfortable with seems fine. My daughter attends pre-school and lost all of her hair while there. It is obvious she has no more hair ( since it was so long before) and currently we only wear hats to cover it. I have shared only with the teachers and close classmates. I assume the teacher has shared with the other staff (but who knows). The rest of the parents just think whatever they do ( maybe they don't think anything at all or maybe they think she has cancer). If anyone ever really wants to know they can just ask me.

Permalink Reply by MARIA (mom of Savanna) on April 12, 2008 at 12:45pm

I would definitely have to agree with everything Miranda said on this issue, I to informed the school of Savanna's condition and talked to some parents too...I didnt make a big issue about it i just talked to her teacher and the principal and the nurse, but for the most part most the teachers where aware of her condition before k. because i have an older son who went to her school now, Savanna lost all her hair when she was 3yrs old and i did put her in head start for the only reason of her meeting kids in our community prior to going to kindergarten, I wanted her to make friends before starting school, I do believe it was the best choice i made for her, because when she started school she had so many friends who has accepted her the way she is, made kindergarden so much easier. Parents are very understanding too, she has already had sleepovers with many friends. Savanna to hated wigs then and still does for the most part, she usually just wears ball caps, so it was obvious she didnt have any hair then and now. My main and total concern is Savanna and how she is feeling inside and out. I would never make her wear a wig in public just so no one know she doesnt have any hair.


Cindy, you are lucky that Samantha loves her wigs and doesnt care to wear them in public or all the time, I think if Savanna was older too when she lost her hair she too might not care to wear them, but she was so young and at 3yrs old it is hard to keep a wig on....

Permalink Reply by KIM - Jessica's Mom on April 26, 2008 at 9:21am

My Jessica also HATES wigs but loves baseball hats. Her school has a no hat rule and we had to get special permission for her to wear them to school. So, of course, all of her little friends wanted to know why she could wear a hat. But, I didn't have to let the kids know! Un-beknownst to me Jessi had forgotten her "show-and-tell" item at home and decided her bald head was a better show and tell anyway. She did it all on her own and the kids thought it was so cool. She even let them touch her head. The teacher let me know later and I was so PROUD! KIM(Jessi's MOM)

Permalink Reply by Cindy on May 1, 2008 at 7:36pm

Kim, your daughter sounds like mine..I could see her doing that if she was not wearing a wig at school. Actually, the first day she wore her wig to school she came home and said all the kids know. And got anxious and called the teacher. Samantha went around telling the kids she had a wig and showed them her hair under it..You got to love them! Sam is looking forward to writing Jessica...Cindy

Permalink Reply by Michelle (mom of Sam) on May 4, 2008 at 11:19pm

Hello Cindy,
Our soon to be 4 year old twins have autism among many other things. I have shared Sam's recent dx with his teachers as well as his therapist so they know why Sam has missing hair. Though he probably will not be affected by this for some time, I am. I have been researching anything and everything Alopecia so that if and when someone has a question, I can be as knowledgable as possible. I feel as Sam's parent, I carry the burden of wanting to protect him from the ignorance of others. Michelle

Permalink Reply by ashley on June 12, 2008 at 5:06pm

HI CINDY, MY DAUGHTER HAS HAD A A FOR 18 YEARS NOW. SHE IS THE MOTHER OF 2 GIRLS. WHEN ASHLEY WAS IN SCHOOL WE FOUND THAT CHILDREN ARE THE CRUELEST LITTLE PEOPLE. WHILE IN GRADE SCHOOL ASHLEY WORE A WIG AND THE KIDS FOUND OUT SHE WAS BALD. THEY TEASED HER RELENTLESSLY.. THE COUNCILORS, PRINCIPLE AND MYSELF WITH ASHLEY TOOK WIGS TO SCHOOL AND HAD A MEETING WITH A FEW CLASSES. WE HAD LAMPS AND ASKED IF ANY CHILD WANTED TO TRY ON A WIG AND JUST SIT CLOSE TO THE LAMPS. IT GOT HOT AND SWEATY UNDER THOSE WIGS. WE TOLD THEM OF HOW IT HAPPENED AND ASHLEY TOLD THEM HOW SHE FELT ABOUT IT. MANY KIDS SAW HER DIFFERENTLY ATER THAT BUT SOME KIDS DID NOT STOP TEASING. THE KIDS WHO WERE NICE HAD EMPATHY FOR HER AND WOULD STEP IN AND COME TO HER AID WHEN TEASED.I REMEMBER MY LITTLE GIRL WITH LONG BROWN HAIR THAT ALMOST REACHED HER BOTTOM. ONE DAY I WENT TO FRENCH BRAID HER HAIR AND FOUND A BALD SPOT.IT WENT DOWN HILL FROM THERE. CINDY CHILDREN WILL FIND OUT AND YOUR LITTLE ONE WILL HAVE TO DEAL WITH TEASING BUT IF WE MAKE THEM STRONG AND HELP THEM EXCEPT THIS DISEASE WE CAN HELP THEM HELP OTHERS TO UNDERSTAND. I AM SORRY IF I DON'T SOUND RIGHT I JUST FOUND THIS SITE AND IT IS ALL FLOODING BACK TO ME. ALL THE EMOTIONS, THE FRUSTRATION WITH AA. MONIQUE ASHLEY'S MOM

Permalink Reply by Stacey, Olivias mom on June 12, 2008 at 9:46pm

My daughter started school this year and her hair began to fall out and by Christmas it was gone she never wore a wig. In February she asked if she could get a wig and we got her one and off to school she went that Monday morning, I called the school to inform them that she would be arriving with a new head of hair and the teacher asked if she wanted to explain to the kids in her class why she wore one and about her hairloss. She wanted to and she was amazing from what I'm told. She has had days where she comes off her bus with wig in hand or the wind whipped it off her head on the playground and the kids would run and get it and they would all laugh about it including her. There are a couple kids that are ignorant and call her "wig girl" etc. but I said to laugh when they say it no matter how much it hurts because that will make them feel and look like the idiot they are acting like. She sometimes wheres it sometimes not. I think its a personal preference if it is a good wig that fits well and you feel fine with her keeping it private thats fine. I guess I have a big mouth lol and in my daughters situation she was bald and everyone seen her that way, mind you some kids that dont know her story thought her hair grew overnight and good enough its cute. As long as they have confidence that is the main thing! Good luck:)

Permalink Reply by Christel Hertz on June 20, 2008 at 4:56am

Hi Cindy,

At Jennifer's first school we decided to inform her class of her condition, they wer allright with it. But it was the older siblings and their friends who started the teasing. It really affected Jennifer, she acted out towards her teacher and some kids and also at home she was more difficult to handle. We chose to change our life and moved and at her new school we have decided to only tell the teachers. So far so good, no teasing. She has told one girl in her class and it has not gone further than that. I have told Jennifer it will be her decision if she chooses to tell her friends.

Permalink Reply by Cathy on July 19, 2008 at 5:49pm

Hi. I have encouraged my daughter to share her alopecia with her friends and classmates. We dont know where this thing is going to go, but in all reality we have to face the fact that she could end up bald. I have read about people going bald within a few weeks! Kids can be mean, and I personally feel would be better to educate her classmates than to have thme talkng behind her back and wondering is she is sick and dying of cancer. Moreover, I felt it might discourage teasing if the kids know what is going on. My daughters bald patches can be hard to hide, if she keeps it a secret it wil hinder her activities...like going in the pool with her friends around, not going to events etc. I can't let her let this thng take her down, and the only way I can see to deal with it and revent that is to face it head on. I don't want people talking and whispering behind her back. Cathy

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