How to deal with kids calling your child bald

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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Permalink Reply by Emily Scovell on July 23, 2014 at 11:04am

Hi there,  I'm glad you're asking this question because only recently this is becoming more of a problem for my son which is 9.  MY son got alopecia when he turned one and got his immunization shots including a new one funded by the government.  Never the less, he's been completely bald and hairless up until the last few years it seems to be getting more and more unfortunately it's still very bald.  My son was put into group sports since he was young to ensure he wouldn't have insecurities but certainly now when he joins sports with a new kid(s) on the team, he wears his hat and is afraid to take it off.  With his current friends who he's played with for years and even new ones he's made within the last few years, like him for him and don't even notice his hairloss.  Obviously the moms of all these friends probably spoke to their kids as well to ensure he wasn't made fun of.  Its a tough battle everyday for him I'm sure, but I also have a hard time because I want to protect him from all these ignorant people or kids.  Just recently there was an incident that I was around for and it broke my heart. MY son also plays baseball and this year there were a few new kids on this team.  He got a long with every one of them.  They all like him alot, he's outgoing and just a goof ball. However he would never take his hat off so nobody ever noticed.  I took my son to a daycare program for the day where he saw one of the new players and he was excited to see the kid until he walked in and the other boy said, hey buddy, what happened to your hair LOL!!  MY son sat down and ignored this boy.  At this time I asked the teacher if he coupld please wear his hat today because its a summer program and not school and it would make his day.  He put his hat back on and was okay.  I pulled this friend aside and told him about my sons condition and how much of a surprise it must have been for him, but please don't make fun of him, its not nice.  Well turns out the whole day, this friend told my son to put his hat back on because nobody wants to see his bald spot!  I was so upset and cried because it's just not fare.  Why him?  So my husband pulled the boy aside last night and ball and explained to please don't say nasty things like that.  So hopefully this won't happen again.  This is just a story I was part of and saw, but how many times is this happening to him on a daily basis.  Just breaks my heart.  I try to talk to my son about Alopecia and he should teach others but he refuses to talk about it.  He's ashamed he has it and feels if he doesn't talk about, then it's not really there.  He doesn't like it when I explain to other parents either, he's embarrassed.  Amungst his friends, he is strong and confident, but when he comes home he is an angry kid and has no one to blame so he's angry until we straighten his attitude out again! LOL!  Anyway, if you ever need someone to talk to, email me directly at: escovell@gmail.com  as I'm not always on this site, only emails come through oonce in awhile.I hope all goes well with your son.  ITs a tough road and a tough road for a parent as well.  Its not fare, but I keep telling myself and my son, it could be a lot worse as many kids have a lot more things wonrg than alopecia, but I understand its tough to have to live with.  I just hope sports will give him the confidence he needs to not hide.  We plays ice hockey and baseball and so far its the best thing I ever did.  I can just imagine myself, if I had alopecia I wouldn't want to leave the house ever, but since we put him into sports all his life, he is use to it and learns to accept change from new kids joining teams but at least he plays and not ignores everyone.  

Permalink Reply by Raya on July 23, 2014 at 2:39pm
To be honest your son is going to go through a lot of hurt in his life but I've been there I was called a lot of names had people say take your wig off at school,and I didn't want to tell my parents about the nasty names I was being called cause I didn't want to hurt them I pretended to be happy. My advice would be to be there for him and tell him about the good ppl in this world and the bad ppl and if and when he wants try to get him some counselling . He's always going to need to talk to someone even tho he won't admit.
Permalink Reply by Jennifer on July 23, 2014 at 4:27pm
My daughter is 10 and has lived with alopecia since she was 2. She has been "bald" off and on for about half those years. We don't shy away from the word. It's just an adjective not necessarily pejorative. When she was little, we would sometimes explain if a child seemed interested. Yes, she has alopecia which means she has trouble growing hair. We did this in front of her and now she can explain it herself very matter of factly. I think being open about it is best. She may have just been lucky, but she goes to a huge school and kids rarely give her grief about it. Her brother gives me reports too. She got more grief when her hair was in an in-between stage, coming in or growing out and it looked more like a bad haircut/style decision instead of a health issue. People are more openminded/curious of bald in my observation. That makes it easier to discuss. I think it's good for the psyche to be open about it and then not dwell on it.
Permalink Reply by Sara and William on July 23, 2014 at 6:10pm

My son first went totalis when he was in first grade.  He's now got patchy bald spots, and just recently decided to shave it all off so that he can wear a wig if he wants or not if he doesn't.  A couple months ago he was getting his hair cut and the stylist spun him so he could see it, and it was the first time he'd seen the back (which has the least hair).  Later in the car he said "I didn't realize how big that spot was. No wonder kids were commenting."  I braced myself, because, of course, middle school was exactly where I figured the problems would be, and he's almost 13 now.  "Oh, what were they saying?  Just commenting or making fun or...."  "Commenting.  Why would they make fun of it?"

I've never been so relieved in my life.  Take a deep breath, this is a long ride, and we are all basically terrified of how this will change our children forever.  But the fact is, it's not necessarily going to be accompanied by teasing and taunting.  I can't promise you it won't be, but it might not be as bad as you fear.  I tend to go with the approach that it's ok to ask questions, and you do have bald spots.  People wonder why.  That's not bad.  When you see something unusual, you wonder why, too.  It would be mean if you made fun of it, but being curious isn't mean.  Being curious is being curious.  

And yes, the questions about cancer were fun.  We don't get them as much right now, I'm not sure why, I guess because he's not totalis just this moment.  Kids just a tiny bit older than my son came up to us and asked if he was a baby, because old people and babies were the only people they'd seen who were bald.  The teachers were the worst, not when he had totalis, but when it started growing back.  THOSE were the ones I hated.  "OMG aren't you glad it's coming back!  Thank goodness his hair is growing back in!!"  Like his life would be over if his hair didn't grow back.  Thanks guys, that's a really helpful message considering his hair will almost certainly be falling out again.....

Just give people a chance.  Being curious isn't the same as being mean.  That's just my opinion.

--Sara

Permalink Reply by Jaxelladaddy on July 23, 2014 at 6:59pm
My son has been bald since he was 2. He will be 8 in August and has had kids point out the fact that he is bald. We taught him to say "Yes I am". Most of the time the kids are not trying to be mean, they are just pointing out something that they don't see everyday. My wife and I try not to make his baldness a big deal and in turn he does not think its a big deal. He has accepted this just as he would have accepted whatever hair color he would have had.
Permalink Reply by Dena on July 23, 2014 at 8:13pm

This best thing I did when my daughter lost all of her hair at age 6 was to make sure she knew how to answer questions about her condition. She has no problem talking about it with strangers. It really bothers me, but I can see she doesn't mind so I just keep it to myself. She usually just tells other people that she has Alopecia an autoimmune disease that attacks her hair sometimes. This is usually enough to end the subject. Kids naturally ask questions and don't really know when to stop sometimes. I have just explained to her that they are curious and to explain that it isn't contagious and that she is healthy.

As far as being called bald, she has no problem with it. Her favorite shirt is her Mondo Baldo shirt that says "Sorry about your bad hair day." She loves to apply temporary tattoos to her head. And on her gymnastics team they always rub her head for good luck. I was a little apprehensive the first time someone did that, but she loved it. I honestly think she is getting attention from all the girls and she loves it. I realized I needed to get my sensitivities in check and just be vigil to how she is reacting. It is hard because I am definitely protective, but she just turned 8 and I can only think of one time a child said something that hurt her feelings. We talked about it and she got over it pretty quick. Her and the girl are friends now. I honestly think my daughter has had this so long that the questions really don't bother her. I think she just thinks that's the way things are. Our kids really feed off our emotions and it is important that we not overreact. I just try my best to be there for those times when she needs me.

Permalink Reply by jjcostag on July 24, 2014 at 8:10am

Hi Melkat09,

My son is dealing with the same problem (7 years old, alopecia universalis) .

I think it's a normal reaction from other kids, when they see someone that is different.  The word "bald" itself is not an insult.... So I talked to him saying "Yes, that is true, you are bald!... But remember that you are a handsome bald". 

I hope it helps

Permalink Reply by Alanna on July 24, 2014 at 9:17am

Awesome!  Love this.  My mom used to tell me, "It doesn't matter that you're bald or not, it matters that you are beautiful from the inside out. You are a pretty girl."  For the past 40 years, I still think about this when I start feeling disappointed, and it helps.

 

Permalink Reply by Stacey B on July 24, 2014 at 3:01pm

Hi,

Help him by being a strong parent but not hiding it from him or sheltering him. Explain it to him. As he gets older give more and more detail. This will ensure that he is able to grow a back bone over it therefore he won't shy away or be embarrassed. He will be able to handle it in time. Until then  continue to be strong for him. 

Permalink Reply by melkat09 on July 24, 2014 at 7:35pm

Wow! Thank you all so much for your responses. It is pretty amazing to hear your stories and to know that I am not alone in the ways that I struggle. I think we will start with a casual conversation so that he is aware that some people are curious and may ask or say something, and teach him a quick, matter of fact response. Can I pick your brains again really quickly as to how you deal with the kids touching or rubbing your children's head as well? That REALLY gets me worked up.

Permalink Reply by BaldisBeautiful on July 25, 2014 at 9:19am

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.

Permalink Reply by Jaxelladaddy on July 25, 2014 at 12:39pm

I agree 100%. 

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