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.
If your son has no hair, then he is bald. I wouldn't feel this word is an insult unless it is being delivered as an insult. My daughter is bald.
I feel the only thing you can do for your son is create an atmosphere of open communication. If your son is worried then he will come to you and your husband to discuss how he may be able to manage these situations. You can't change everybody's behaviour, just what you do around it will count. I also believe your son has to feel supported and empowered to deal with some of these situations (when he needs to himself). So, open discussion and a little role playing may be helpful.
In a school environment there is a lot that you can do as a parent to help manage any type of bullying. Contact Naaf and Cap as both these organisations have very good support literature around this for parents.
If I can be of further assistance feel free to contact me.
I see what you are saying. I have been struggling with how to bring it up to him (because I want to teach him how to handle it if we are not there)...but maybe I shouldn't worry so much or treat it as a "heavy" thing. Thanks for the response.
Teach him what he has and how to talk about it. So if someone calls him bald, he can say "yes I am. I have AT and this is what that means.
I lost my hair at age three, so I can tell you from first hand experience that he can handle a lot more than you think he can...if you let him. He has to see you not react like it is a negative thing. Protect him as any parent would, but don't take it overboard.
Ass an adult with Alopecia Areata, I like when children ask me why I have no hair, then I can teach them something. It's all in how you, as parents, approach it. At least from my perspective.
Thanks David. We haven't taught him what it is called yet. I think that is a good step.
I went through this -
Looking back, I think my mom was a bit too protective of me. There is a big difference between curious kids pointing out and being curious about something different and the kids that are genuinely little pricks. Don't group them together. It's really easy to be excluded due to hyper sensitivity and developing a complex and group that all under "they have a problem with me"
I like joining cub scouts and a lot of the clubs in my area. Let me do regular things and be exposed to other kids, from other school districts, in different settings.
The school district back then was worse than most of the kids - know my folks butted heads with them more than once. Remember, there was no internet or really any information out there back then... I met my first person with alopecia in my softmore year off college. Beautiful girl, had a quick conversation on the steps of DVC in Pleasant Hill in the late 90s .. and it stuck with me.
Don't be afraid to push back, not so much for special treatment...but more to ensure parents and kids aren't inadvertently causing problems.
This isn't for everyone, but one thing I was very thankful for was my mom's attitude around sticking up for myself. I'd, of coarse, get a whooping if I started something - but would not get in trouble for sticking up for myself. Had a couple of little kids that were just mean that liked picking on others ... and if that professed into a typical little kid schoolyard incident, I wasn't punished like I did something wrong. I was taught there are other ways to handle yourself.
In hindsight - I wish I had totalis then. I had areota - and we spent so much effort and time trying to make it "cosmetically acceptable".. total mixed message that there was nothing wrong with me, but I still should strive to be fixed. Would have much rather used that extra time to accept myself as early as possible.
If you see your folks treating you as normal, sticking up for you and making you not just take it ... it isn't nearly so bad :)
Hope this helps -
Parents can be the worst...they will push you t
Thanks TallGuy! I especially am quick to jump in and stop the kids from mentioning it and have been trying to figure out how to make the transition into showing my son how to handle it for himself. I really get worked up when kids start poking or rubbing his head. We have also learned to be very protective as the steroid we first gave to treat the alopeica caused adrenal problems for 2 yrs...so he stopped growing. His small figure combined with his sweet demeanor seemed to make him a target for bigger kids to push him around. We have taught him that no one gets to put their hands on him...and he will not get in trouble for pushing/hitting back if necessary (at first he should try and tell an adult, of course). I like the insight about your parents trying to make the alopecia comsetically acceptable and the message that sent to you. I have given him military-looking haircuts when all he had was hair on the top, but I will def keep in mind that we don't need to put the focus on "fixing" it. I appreciate your response :)
wow thanks Tall guy,im a parent of a five year old girl with alopecia,has just lost her eyebrows an starting to lose her eye lashes as well.what you have just said has just put things into perspective more.
im always worried abut how it will be for her growing up (teasing).
to me she is still as beautiful as ever,an always will be.
My 8-year-old son with AA is naturally a very confident kid. We've taught him the specifics of alopecia, so his usual response is to confront the person himself with, "Yep, I have bald spots. It's called alopecia. You can't catch it and it' doesn't hurt." When he was younger, I gave the same response for him, but it's been empowering for him to answer for himself. We've gotten the same reactions as your son has...they seem to bother me a lot more than they bother him. If your son is confident enough, I would encourage him to answer people's comments for himself, but don't be afraid to step in if the comments are abusive or bullying. Best of luck to you and your little guy!
I have had alopecia universalis since I was 2 years old. Now my daughter who is now 9 years old, has Alopecia as well, and we have had children shout out or just stare as you described here.
We have experienced and dealt with the trauma that your son is going through. I still am bald, but have chosen to not wear wigs any longer. Throughout my life, I have struggled with the trauma you describe and watched my parents, as well as become a parent with a child who suffers my same struggle.
My non profit- Boldly Me - focuses on helping people embrace yourself as you naturally are. Your son, like me and my daughter did not have a choice. So, it is very hurtful when people say you're bald. BUT, if you embrace him and he embraces himself as a bald person, and realize it is not a criticism but who he is, life is easier. I look at my bald head in the same way that other women say they are a brunette or blonde. It is a bold way of being, but I am finally happy. My daughter can't wait to be a bald woman, and brags about it. She has fully embraced it, because she knows that she can be bald and beautiful.
I have also found that the stress caused by trying to hide it, actually draws more attention to you. And replying with "I'm totally healthy and happy, I just can't grow hair." Then people embrace me and my daughter, and we are able to build really fun, long lasting friendships.
But, I totally understand if your family is not ready to manage in this way. My mother was not ready to respond to the questions about my alopecia, so growing up so I wore wigs to avoid any potential comments. I am parenting differently with my daughter, and she is very happy/confident in embracing who she is. She also hopes that she loses all of her hair, just like mommy. I hope this helps. Let me know if I can help. Another resource is http://www.boldlyme.org/
thank you for your input.
people really are beautiful from the inside out
Hi! My daughter has AT and she is 6 so we are right in that transition area like you. I'm completely right there with you, I find myself avoiding the word "bald" as if it is a 4 letter word. Bald has such a negative connotation that I hate to use it.
We have taught our daughter to say that she is perfectly healthy and that her body won't let her hair grow. She isn't always comfortable telling that to other kids and especially adults, and I've noticed that it is how they ask her. If it is an accusation type she isn't comfortable responding and that is when I jump in and talk with the child. If the child asks and is more inquisitive she happily answers and away they go to play. She isn't comfortable talking with adults yet and to be honest I'd rather talk with the adults about her Alopecia. We have had a little problem with adults talking with her about their cancer, assuming that she has cancer, and it has caused a lot of confusion for her. I almost always cut them off before it gets too far. I know they are trying to connect and make her feel better about her self, but they shouldn't assume that she is uncomfortable being who she is. After a dad volunteer at her school talked with her about his cancer she asked if she should hid her head. WOW was that a tough conversation.
A short little story... When she was 5 she was in a soccer game and one of the boys on the other team walked up to her and said, "You're bald!". As you can imagine I was on the edge of my seat ready to jump into the game if need be to protect her. All the parents heard it. She looked him in the eye and said, "So what?". He then said, "But you don't have any hair." and she replied, "Well I can run faster than you!" and off she ran to the ball. I WAS SO PROUD!!! Turns out the little boy's father was sitting next to me and never said anything. We've found that if the child is rude, most of the time the parents apologize to me.
It is a tough transition to make but teaching our daughter to be happy and confident in who she is, has really helped her handle these situations when we aren't around.
this might sound a bit bad but with my girl having alopecia i feel like its worse than for boys,as ive always liked having a shaved head,i do know its not the case and that it would be very hard for boys aswell,im glad to see that your daughter has stood up for herself ,i just hope my girl gets the confidence to do the same when it comes to that.
thank you baldis beautiful