My son is 5 yrs old and is currently experiencing Totalis. He recognized this condition last year, and we have explained that sometimes his hair just doesn't want to grow. We have made sure that he knows that he is perfect and beautiful for who he is, and he has grown to be confident and comfortable. Since the alopecia started, we have seen a whole range of reactions from the public...from adults asking if he has cancer (right in front of him!) to kids who play with him without even noticing. The newest reaction, which has happened several times lately, is a kid walking up to him, touching his head (or pointing) and declaring "He's bald!". So far on these occasions, myself or my husband have been there to jump in and deter the child and speak with their parents. My son has not seemed to notice, but I am worried that he soon will...and that it will hurt his feelings. Fellow parents: How do you deal with people throwing around the word "bald" to your child? Thanks in advance for any insight or tips.

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Take your lead from him.  If it bothers your son talk with him about how he would like you to handle the situation.  If it doesn't bother him, don't let him know it bothers you.  You don't want him to take on your sensitivities.  If he is confident and it doesn't bother him, you don't want to take that confidence away from him.  Talk with him and let him tell you what he wants.

Sometimes it bothers me and I can tell by my daughters face that it bothers her.  It's typically younger kids who can't help themselves because they are curious and I've explained that to her.  Sometimes her friends will touch her head, but it doesn't seem to bother her and I guess it is the equivalent of playing with each others hair.  I've also stroked her head since she was little when we would cuddle (like my mom would with me) so maybe she is used to the feeling.

I agree 100%. 

Dear Melkat09

My son is also 5 years old and experiencing AT. He is also facing similar problems at school and / or other places. I have taught him to ignore such comments. I keep on telling him Hair or no hair he is my child and we love him no matter what. He is one of twins. So I've taught his brother to tell him the same. We say 'I love you' to him very frequently. It has tremendously positive effect that he has stopped gritting teeth in sleep. I have learned first thing about Alopecia is that you have to accept the situation. Stop over protecting your child, see the inner beauty and enhance child's abilities. Encourage him to come forward and speak in front of other people. Even if 1 person listen to him without teasing him, it will help kid to enhance his confidence.

Arnav's new class teacher congratulated me on the very first meeting. Saying that he is very composed about his appearance. We have long way to go. Together WE CAN..... Take care

I know my daughter enjoys people touching her head. I think in her mind that it is a way of people accepting her. The same way she plays with her close friend's hair. I have also stroked her head since this all began and her friends, coaches, teacher etc. have all done it occasionally. She tells me she likes having her head rubbed. My daughter has Alopecia Universalis and most kids comment on how soft her head feels. I am surprised by how many seem interested in touching her head, but people use to touch her hair when she had hair so I guess it is sorta the same thing. It might help to contact NAAF since your child is school age. They have lots of resources that can help his classmates understand his condition. Sometimes you or his teacher just sitting down and explaining it gets all the questions out of the way. I agree to just follow his lead. If a child doesn't seem to realize anything is wrong and their parent acts as if there is, it is only going to make them stress over a situation that they were unaware of in the first place. Young kids don't have the social skills to understand when they are crossing boundaries. I really think most of the time they mean nothing by it and I try my best to cut them a break if my daughter seems o.k. Unfortunately there are a lot of adults who are insensitive too. Those people are not so easily ignored.

Thanks again everyone. It really does not seem to bother him when people touch his we will take that into consideration from now on :)

Not the best story - but parents can be worse than kids ...

I remember minding my own business in a store, and had some woman not wanting to let me near her kids, and very loudly asking what the hell was wrong with me ... Sad thing is, we were so used to it at this point..that it really didn't phase me. I think I was 8 - but I politely answered her ... and she just wouldn't let her go. I remember telling her, that I get asked a lot of questions and was happy to answer...but that talking to her was rather difficult for me. She asked if t was becasue I was still getting used to it... and I responded  something like "No, it's because you are really rude" that matter of fact, kid inflection voice... could hear my mom laughing in the other aisle :)

That set her off, the lady just wouldn't let it go and I think called me a brat ... and my poor mom finally kind of came up behind me and kind of ruffled my hair and asked if I was ready to go ... then proceeded to put her hand on the woman's head and lean in to tell her under her breath (very much an irish thing...) "now you've got it..." and to show some *cough* ing respect... Remember leaving the store with a small bag of popcorn and that woman frozen like a statue in place ... not knowing what to do next...

Not the best way to handle the situation, but I'm sure all the parents can relate :)

Childhood with Alopecia is really a simple, one track thing, no different from other kids - just get to being an adult accepting and liking yourself...  you can't fix the environment so you never feel rejection, people will be awful, lot of folks will want nothing to do with you ... but you know - it's the same problems fat kids, poor kids, sick kids, unpopular kids, and more face everyday too.


I like your mom's sarcasm! I think she handled that situation in a more composed manner than I would have! It is crazy that you all were used to dealing with that kind of ignorance and is disturbing how horrible some people can be. I have restrained myself in many situations because I have not wanted to make a big to-do in front of my son when he wasn't upset...but someone like that would have set me off!

It's a different world now - folks are a lot more sensitive in general.. and there is a ton of information available. I think I first showed signed around 1980 - and there was a very terrifying moment when my folks didn't know what the heck was wrong with me and there was no one to ask.

They enrolled me into a medical study - which in hindsight was a mistake IMO. The one thing I took with me from it was it was in San Francisco in the mid 80's - and my testing facilities was directly across from the AIDS ward. Even at 8 - it kind of put everything into perspective. In my kid brain - I didn't understand what was happening to those folks, but knew that even bald, I was in better shape.

I think the best thing you can do for kids is get them to accept their reality quickly and develop the other parts of being a person that really resonate as we get older. If you pop into the world at 20 - but are smart, rounded, confident, respectful and can handle yourself... you are really setup to succeed. Sure, you'll have to work harder at it than some ... but the alternative is laying a lot of hope in finding a fix or a cure that allows you to start your life ... or rejecting yourself before you even try.

Shoot - how many really got the shrink wrap off their life before they were in their 20s? or really understood themselves before 30?

If I could go back and advise my parents - it would be to fully embrace my situation early as permanent, and funnel all the energy that would go to fixing, worrying and trying to change me to be like the "normal" kids to pushing me even harder to develop the parts that really matter...which really didn't start until I was about 10, and was singled out in a statewide essay contest.



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