My question is probably either too general or too specific, but I am preparing to share my alopecia story with my son's 5th grade class, and the only thing that worries me is, that by sharing, my story will become in part his story. He will become the kid with the mom who lost her hair or who wears a wig. I will be sharing in the context of a program that teaches about inclusion, kindness, and preventing bullying, and I feel like I have something to give that might help a child or young adult sometime down the road. Having been open about my hair loss, I suspect some of the kids already know, but so far in their class this year I have carefully worn a wig.

My son hasn't yet reached the stage where the very existence of his parents embarrasses him, but I'm curious how kids who do care have reacted.

I do plan to forewarn him, but at the same time I feel like sharing is my decision, and I will explain my reasons to him if he objects.

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First, let me say I used the word "fat," and I chose to use it not for shaming purposes but with the assumption that it isn't something to be ashamed of and yet is a visible attribute that, if we assume kids will pick on other kids for their relative's physique, could be just as much of a target as alopecia. I get that being oneself and talking about oneself are not the same thing, but to me no one should be picked on for their or their parents' appearance. Very few of us are supermodels. 

You said it so well:

"If different is ok, then let all differences be ok. Take the power out of shaming others for their inherent physical attributes (skin color, features, baldness, stature, weight, height) and practice kindness and acceptance for all physical attributes."

I will talk to my son, and I will talk to other adults who are part of the program before I go forward. While it is true that I might get the reward of facing my fear and of telling my inner self that I have nothing to be ashamed of, I really do see this as my small bit of the world I can influence for the better. Someday one of the kids might meet someone with alopecia. Someday they might encounter a kid or adult who is just different, and if I can in any tiny way help them to see beyond that, then that will be great. If there is some young woman or young man who someday reveals her or his alopecia and gets the response, "Oh, alopecia. I've heard of that," as if it's no big deal, then that will be great. If there's a girl who really feels the message that it isn't all about appearance, because here it is in front of her and not just in a story or a lecture, then that will be great. I don't consider myself qualified to be a spokesperson for alopecia, so I'm not likely to head away from "home" to attempt inspirational talks. 

And when it comes down to it, I'm guessing my hair loss will be far from my most embarrassing mom attribute. :)

I have to suggest you talk to your son first.  I never would think to open up to my daughters peers about my alopecia, always kept it to myself.  She would never invite her friends over, when she graduated from High school we had a party, we invited friends.  I told her to invite her friends, the day came and none of her friends were there after every one left her father and I asked her if she had invited anyone, she said no, and informed us she was embarrassed by my alopecia and that was why she would not have friends over all her life. 

This came as a shock to both of us as I had worn a wig since she was two weeks old and had made always efforts to make sure the wigs looked realistic, penciled in brows, made every effort to look "normal" and we never talked about the AU in front of people.

So I warn you to talk to your son, any child before going public to their peers.  You might want to go public, but apparently our children might not want to be known as the kid with the bald mom.  At the wteen and teen age they do NOT want to stand out as NOT Normal or different.

Thank you for sharing your story. To me it sounds like a story of missed opportunities, as if she never had an opportunity to get over your alopecia because it was never in the open. Again, I don't want to sound like I am arguing with anyone's perspective, because I'm not--I'm just thinking things through. I wouldn't want my kids to be so embarrassed by my alopecia that they wouldn't invite friends over, and to me making it no big deal and being open about it seems a good way to do that. I'm sure I couldn't have managed careful wig wearing with three little kids, and, in a way, I think that was a good thing because I made it clear to them that I wasn't ashamed (not that you were, but I feel that kids can get that message if something is kept secret from the world).

Having been a victim of bullying as a child and young adult, I got teased about my Mom's loss of a breast due to cancer. The kids who gave me a hard time were crueler if they found out on their own. I didn't get much grief from those who already knew. I think the "shock" value is less when something isn't a secret. Choosing when to tell also gives you some power and control  I think by discussing it openly you're saying neither you or you're son will be victims.

God bless,

Larry

Don't share this with your son's class. Children cannot handle it.  They will take it out  on your son. Keep your baldness a secret.

Thank you for your input. My baldness isn't a secret. I'm trying to be more consistent, but I've shown up at school with a wig, and then, hours later with just a hat. I'm a self confessed bad wig wearer. I'm not good at it. That said, I don't walk around saying "Look at me, I have alopecia!"

I'm still wondering what kids could do, which no doubt shows up my naiveté. There's no taunt in "Your mom wears a wig," when it isn't a secret. Do I assume the worst of these kids, that they would make up an excuse to ostracize my son? That somehow seems unfair to them.

I must admit that some of these comments hurt me a little bit. 

It's sad to think that we should ever have to carry shame for something we don't get to control. And I believe, kids will take on whatever attitude we have. It's our job as adults to teach them the appropriate way. It's true that kids can be cruel. But often times, it's easier to change their minds than adults who are often set in their ways.

Small anecdote: My 7 year old niece is kinda mean,but I know she learns it from somewhere(prob her mom). She told me that my thighs were "fat." Now, I must admit, my first inclination is like "B****, plz."----(then I remember she's only 7). So, instead I say, "These are not fat thighs. In fact fat isn't a nice word. I prefer....womanly, curvy, and sometimes juicy." And, she laughs, and so do I. 

We don't get to control what others say or do. We only get to control the way we deal with it. 

So, your story was personal to me because I have alopecia areata that has turned into almost totalis last year. I shaved what was left. I'm also a 9th grade teacher. 

I shaved my head over the summer, so the next year I returned to school with a wig. 

I had AA episodes before, but they were never noticeable. And, they always went away eventually without anyone really knowing. I finally started to understand that this may not be a temporary situation. I was delusional just thinking "Oh, it'll be back soon." But then, after 8 months of going through it. I realized I had to come to terms with the possible permanence of the situation.

So, I took my wig off for my students. I explained to them the condition, let them ask some questions. I even have a youtube video of the shaving process. Here's a link to my blog with that video on it if you're interested. There's two, actually. 

https://wordpress.com/post/namastates.wordpress.com/215

But anyway, after that, it wasn't really a big deal. In fact, I don't usually spend much of my time talking about my problems. I spend more time listening. They tell me all about their relationships, sports, parents, friends, etc. They're more into themselves. I kind of think people are like this in general, probably. 

If people, especially children, see a weakness, an insecurity or some type of hole that they can poke at.... they will.

But if you want to see a kind accepting world, you have to teach it to be that way. First, live by example. Second, you may have to bravely be kind and accepting in a way others aren't. 

And, I think people who say "kids just won't understand" must be projecting or something.... because they understand a lot. And it's important that we as adults model that understanding.

Although, I do agree that it is important to assess the situation with how your son feels about it. If he's a really shy or insecure kid, maybe not. Does he already get bullied? Is he a loner or does he have a good group of friends (at his school and in his class)? 

What is the classroom climate? How do the kids interact with each other/teachers? Socio-economic can play a role. The education of the parents makes a difference. 

And plus, if it's not okay to make fun of someone with one arm or leg, blind, or deaf.... so why in the world would it be okay to make fun of someone with AA? Is it really something we should be ashamed of?

And to the person who isolates themselves, I feel sorry for them. 

And for me, that will never be an option. 

 But, this could be a really great growing opportunity for your son, his classmates, and everyone. You know, his classmates have body image issues too! Maybe you could teach them something. 

Good luck and keep us updated. 

Thank you for your teacher's perspective. I think the classroom climate issue may be part of the reason for such divergence of opinion. While I can't know what my son's future will hold, for now his 5th grade is still elementary school, and I want to say it's a good group of kids, but that seems to imply there are bad groups of kids. Maybe I can say we are in the California Bay Area, where inclusion and acceptance of difference is a way of life. It's a school without bullies because we don't want to label the child, just the behavior, and even then, isn't it better to thinking about bucket-fillers and bucket-dippers than "bullying"? OK, so I'm being a bit sarcastic, but what I am contemplating is just trying to be a positive example in a classroom where I am already a presence.

It sounds like you did well living by example.

Well done I always believe that being honest and open is the best idea. If your child's school  has an anti-bulling policy this is a golden opportunity to teach how to respond to someone that is different with empathy and compassion. I taught at a low decile school  and the students treated me well. If all of their questions are answered with honesty and is part of a values programme it should be fine,

Odds are if you show up with a wig and then with a hat, the younger the kids are, the more they notice. Kids are amazing like this! They notice the details adults fail to miss (because we're much more used to our worldview filtering things out, and we've enculturated not saying anything to anyone who might be different about their differences.

So I'm guessing many of your son's class mates have noticed already that you have hat and wig times even during the same day. And they're still young enough for deep curiosity without necessarily looking at it as a BAD thing. All this being said, I'll be if you put a temporary dinosaur tattoo (or maybe a stormtrooper or a heart or something) on your head, they would think it would be super cool when you took your hat (or wig! for drama!) off with a flourish.

I do a lot of work in breastfeeding advocacy - and it's shocking how something that, sixty years ago was entirely necessary (before formula) has become so taboo. We work to normalize it - and that means making sure everyone - especially kids - see nursing moms everywhere. I kind of look at alopecia the same way. We have a very visible disease, with alopecia. So many like arthritis, or celiac, don't have any physical attributes. And  yet, it's a very unknown disease (unlike, say, diabetes, which is also not visible but very known). So maybe it's a good thing - at least these 28 people will grow up knowing what it is!

Good luck!

I think the point some of us are trying to make is this: yes, it is important to teach our (and other people's)children to be accepting, and we should absolutely model that behavior. However, you could go to any number of schools, youth groups, community centers, etc. to do that. By inserting yourself in your son's classroom, it is making this all about you.

It is not about you, or acceptance, or whether or not children will be bullies, or how one can force the situation so that they will not be bullies, or how sad the state of the world is when we can't all feel comfortable to wip off our wigs and walk freely.

It is about your son, and about what he is comfortable with. I cannot imagine my mother coming into my place of work to share something personal about herself (regardless of what it is), particularly if I was not comfortable. It is not her place.

I am just not sure why this needs to be made a "teachable moment", unless the circumstances truly call for it, and your son is clearly comfortable with it. And I say all of this with kindness and support. As a mom of two toddlers, I'll be dealing with this sort of thing soon enough, but it will be led by my daughters, not me, and hopefully I will have taught them enough at that point. Or, that the world will be a different enough place in a few years that all of these ideals we have about other people (and their children) will be reality.

My daughter was in 6th grade when I lost my hair, my son was in 3rd grade.  Both kids handled my alopecia universalis differently, as well as I'm sure each class would too. 

I agree with both sides on this issue, so maybe talk with your son and make a decision together?  If you two disagree and you choose to go your path, that's ok  I think since you both talked it out and heard each other's side.  I think as a 5th grader (about 10yrs old) this is a great learning opportunity about communication as well as about how a person with Alopecia feels. 

Just my thoughts. 

Heather

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