Replies to This Discussion

Permalink Reply by Mandy ( Bradyn's Mom) on March 28, 2010 at 9:49pm

I would ask the parent if it would be ok for you to tell the child why. You can use terms for the hair loss that they can understand. Something like.. She has Alopecia, which makes people lose their hair, but she cant give it to you and shes not sick.

Permalink Reply by Pamela on March 28, 2010 at 10:37pm

Usually parents of the child are at a loss to explain too, so ask if you can explain it to the child. Tell the parent that you get this all the time and would like to help. If you get the OK, just tell the child that some people are tall, some are small, some are dark brown, some are light brown, some have hair, some don't. Younger children are usually just fine with that much explanation. Also, your daughter hearing that will develop an attitude of acceptance of herself and of others who look different from what is expected.

Permalink Reply by Sara and William on March 29, 2010 at 12:36am

It's going to keep happening, and it won't even always be children. Parents of child survivors of cancer have come up to me asking how long my child has been in treatment. A teenage mother and her newborn baby came up to us at McDonalds a week ago and asked if someone shaved my son's head or if there was something wrong with him. I guess, in the end, you just get used to it. It's probably harder for you than it was for me, because you have a daughter, but it's not a walk in the park with a boy either. Just today my son declared that if he ever gets hair again, he's going to let it grow really REALLY long and not let anyone cut it.

I think the most important thing is for you to decide that it's not a big deal. I can't tell you how to do that, and don't beat yourself over the head, because I KNOW that's easier said than done. We've all been there. We all feel your pain. Many of us will cry with you. I'm not criticizing. But in the end, I think that's the thing that will help your daughter the most. I try to let my son (who's older than your daughter, so I don't know how practical it would be for you) decide if it's a big deal or not. I ask him if he wants to answer, or if the questions bothered him, things like that, and then I act accordingly.

Remember, though, if children ask, that's mostly a good thing. It's when they start looking away and being embarrassed, staring without saying anything...those are the really hard things to deal with, I think. When they ask, you can answer. When they stare.... Well, I haven't figured that one out yet, either.

Permalink Reply by Cindy (Duncan's Mom) on March 29, 2010 at 10:52am

Beth, I know it is so hard. It amazes me as well how "big people" can be even more rude. I think with kids, they are truly just curious. I know Duncan once asked loudly, "why is that guy in a wheelchair - do his legs not work?" It was a great teaching time for me to show him the comparison of how people ask about his lack of hair -- it is really just because they don't understand. I explained that the way it makes him feel uncomfortable that he probably just made the man in the wheelchair uncomfortable (the light bulb went on). When we are asked -- Duncan or I will tell them what he has Alopecia Areata and a simple explaination as to what it is. Sometimes Duncan will just say "I'm bald -- just how God made me!" He has a great attitude about it. I think it bothers me sometimes more than he. I feel that it is important for him not to know how much it bothers me though. I am glad that he is just bald -- I love him that way. He has a beautiful head and is perfectly healthy. I had an eye-opening experience when he first found out why he had lost his hair. I was in the airport and saw this beautiful toddler boy (about Duncan's age at the time) -- he had beautiful long, dark eyelashes and thick, wavy hair. I had that envious feeling hit me "why can't Duncan be like that" Then the little boy sat down and his pants leg cam up some -- he had an artifical limb! Wow - God thanks for the message of the blessing that my little healthy bald boy is. My attitude change has been a good one and I think Duncan picks up on that positive attitude. I mean really we all have something about us that we don't like -- we all need to remember that we are beautifully and wonderfully made!!!

Permalink Reply by Jen Deletto on March 29, 2010 at 8:46pm

I've gotten some cards from the Children's Alopecia Project that are business card size and briefly explain what Alopecia is. I have no problem handing one to an adult who is looking or asks a question. I rather just continue on about my day instead of stopping and explaining every time somebody asks something.

Permalink Reply by Beth Breslow on March 30, 2010 at 3:15pm

That is just what I need. How did you get them? We attended the CAP fundraiser on Saturday night and another parent mentioned using them but I wasn't sure where they got them. Thank you so much for your helpfulness!

Permalink Reply by Jen Deletto on June 28, 2010 at 3:41pm

Beth - I have some in my purse. Remind me to give you some when I see you next or email Betsy. She sent them to me in the mail.

Permalink Reply by Lisa Leppert on March 30, 2010 at 5:23am

You are lucky. Everyone usually refers to my daughter as "little boy"; which hurts her feelings a little. Kids are going to have quesions. My children ask all the time about people that are different. My Alexandria will tell the children she has Alopecia. That she can't grow hair. If I hear it I will also approach the child and explain. It natural to be curious. I would much rather people know than to assume like most that she has cancer. I am raising my daughter to not be ashamed of who she is and to "owe" her baldness. And believe me she does. She is a little spitfire.

Permalink Reply by Cindy on March 30, 2010 at 3:10pm

My daughter recently did a presentation on Alopecia to her girl scout troop. We read a book called the Girl with No Hair which I highly recommend using a tool to help talk to your daughter about her hair loss. But, more importantly Samantha talked about her AA in terms of an allergy. She explained that her body is allergic to hair and unlike other allergies to animals, peanuts, milk, etc you can see her allergy. She further stated that she you can't catch it and that she is no different from anyone else. If you haven't contacted Childrens Alopecia Project yet I would suggest you do so. They maybe able to offer you some suggestions and provide to you the business cards describing Alopecia as I saw someone else comment on.

Permalink Reply by june edwards on June 8, 2010 at 4:08pm

i dont think their is a simple response , however as much as i continue to look at my little girl who is 5 and has no hair and think i wish she had hair and i think her having none has partly defined who she is . In that I mean she can play the clown and make people laugh , i think she is saying well if you are going to look at me I' ll give you something different about me to remember. My daughter has the most amazing smile and beautiful twinkling eyes , which a lot of people comment on . Yes she will be noticed more because she is bald but they rememeber her for a different reason beause she is happy , friendly and fun loving. I think that is a nice reason to be remembered . You will find it does get easier the psychologist said to us they easier we find it the easier isla will cope with it and that is true just keep seeing that they are curious as we all are about people that are different .

Permalink Reply by Jen Deletto on June 28, 2010 at 3:45pm

We just got back from Disney...the Happiest Place on Earth... and I cannot tell you how many ADULTS came up to me asking about cancer, Chemo, and trying to offer words of encourangement (her hair will be more beautiful then ever once she stops her chemo treatments). Here we are on a family vacation trying to just enjoy being away and we were constantly reminded of her condition and stopping on our tracks to explain it to others. I don't mind explaining it but I do mind the assumptions that just because she is bald people think she has cancer. While in Disney, my sweet 5 year old asked if she had cancer and that was why she didn't have hair! NO NO NO! Wrong on so many levels!

Permalink Reply by Maritza Stern on July 3, 2010 at 11:19pm

I usually just start explaining it to the child, I don't ask for permission and then the parent gives me a smile and lets out a sigh of relief as if I just saved them some embarassment. You have to do it quick and swiftly get your message out in as little words as possible, while keeping a smile on the entire time you are explaining Alopecia. I get a lot of smiles from people when they see Thomas (age 7). We just walk around as if nothing is different and for the most part so do others. They look but really don't stare much. So far so good. If you are shy and reserved to begin with, this approach may not be easy. Hang in there, you'll figure it out.