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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I applaud your reasons for doing this, but kindly caution against it. This may be your story and your decision, but it's his world.

Joyce, I agree wholeheartedly with you.  While I applaud GardenJess on her efforts to educate people about this condition, I know how sensitive 5th graders can be.  I would take my child's feelings into consideration FIRST, but that is just me.  Her son may say that he does not mind.  However, it is possible that he really does mind, but does not want his mother to know that out of fear of hurting her feelings.

I have twin boys w/alopecia and I once thought it would be a good idea to go into their class and explain this to their peers.  Their dad didn't think it was necessary and neither did they so I didn't do it.  They were in 5th grade at the time and had just started becoming a bit embarrassed to be kissed by "MOM".  I think you should see how your son feels about it and if he disagrees, I would use another platform to launch awareness and let his classroom and classmates be his decision.  You sound like a brave and loving mom. I wished more ppl shared their stories to help spread awareness! 

What a wonderful way to give an important lesson to both the class, and your child. I think it's fair to have a discussion with him in advance to "warn" him and share your reasons, to preview what you will share, and to ask him to be a supporter of you. It might also be a good idea to have him help you imagine some reactions kids in his class might have, and help him prepare responses. This way he knows how to react and can feel confident.

I would practice his reaction to both positive and negative responses, like what he would say if someone praises him for having a brave, open mom. As well, practice negative responses, like what if someone makes fun of his mom/you, or what if someone makes fun of him because of you. Finally, there is a chance a child might respond with their own private stories of someone in their life who is different, or an experience they've had with a parent who is different (a relative who went through chemo, a special needs sibling, a birth defect, parents with health/mental health episodes... anything) and it will be important he knows how to process these conversations and escalate to an adult if needed.

If you are not already planning, I would make sure to reiterate to the students that alopecia is not contagious, you can't "catch" it, and nobody does anything to get it. It just happens.

Good luck. Let us know how it goes! :)

I tend to agree with Joyce. I think there is always room to teach about kindness and inclusion, but it can be done without your story, I say that in a caring way. As the mother of a daughter with AU she has cautioned me about the need to share her story or my story. As she has clearly stated to me Alopecia, does not define her so no need to make it the focus of my life or hers. I think if you wanted to share your story doing it within your own adult circles can be helpful and informative. Just my thoughts, good luck in whatever you choose to do. Kindly yours Lisa

I agree with Joyce. I think you should talk it over with your son. But caution him if he's prepared to be potentially bullied by his peers.

I think you should ask your son.

But MY son, who is 6, agreeably tells anyone that it's not my real hair, it's a wig, completely unannounced! Last Wednesday, at hockey practice, one of the boys who was sitting next to him (having his skates tied by his father), said to me "I like your hair" and I said "why, thank you!" and MY son said "it's not her real hair. She wears a wig." The dad was really uncomfortable, LOL. I just said "it's real hair, just not MY real hair" (it's a Follea.) I think when we get to fifth grade, he'll either tell everyone or no one at all ;D. This isn't the first time he's done it either. His kindergarten class knew all about it.

But your son's comfort level with your story is important. And if he is comfortable with it, it's a great way to teach that tolerance for people who are different.

I commend you for wanting to share your story and help others. 

How about asking him if he would like to work with you on this and present it together? Does he have a bullying experience that he would feel comfortable about? Or something that happened to a friend or sibling that he can relay? Or perhaps he would like to spearhead the entire presentation. 

I understand your concern and think the only way to avoid where the emphasis is, would be to redirect it by involving him.

Good luck!

I agree, ask your son about talking to his ,class. I have alopecia and as a teacher I had to decide if I told my students or not, I was at two schools during the time I worked and had alopecia .At the first school the staff decided that I didn't tell anyone and that lead to some comments being made by astute students. At the second school I asked the principal if I could talk to the whole school. I did and the empathy from them and the questions they asked was so humbling and the questions showed some deep thinking.

Your son will be a nine day wonder and then it will become part of his persona like it was for me. Can you imagine the freedom it was to joke with my students eg. Whoa it's a windy day will this be the day when you have to chase after and catch my wig!!

Now it's coming up to the time when I talk to my grandchildren about alopecia. They see me in caps and wigs and funny enough it's the 2 year old who is puzzling about my changed appearance.

All the best Keep us all posted.

Please reconsider your decision.You should not use your sons classroom as your podium. There will be those who except, but there will be those who will make your sons life a living hell. This could make him absolutely miserable. He could be miserable for his entire school life.You state that of course it is your decision, say what?, its his class not yours. If he had come to you and asked that you do this, then great.

Thank you all for your thoughtful responses. I really am thinking about what I should do. For more context, my youngest is in kindergarten and had no qualms about announcing to her tablemates, "My mom is wearing a wig. That's not her real hair," and having dealt with toddlers and small kids since losing my hair, hiding my alopecia hasn't really been an option. I don't go around advertising alopecia, but most adults I interact with regularly know I have it. I often wear just a scarf or hat, so observant folks would know my hair is lacking, and I'm sensitive enough to not want people to assume I have cancer.

Perhaps I am being too idealistic, but I see the school climate now as vastly different from when I was in school, with bullying actively addressed and kids given the language and tools to protect themselves. I am a volunteer who reads with a program called Project Cornerstone, and we will be reading and discussing a book called Don't Laugh at Me about kids who stand out for their physical differences. My alopecia would be just a real life example. I have had two discussions already with these kids and have been impressed by their apparent maturity.

It is hard for me to read strong opinions that I shouldn't share with the kids, but, again, I do appreciate the input. It is helpful, and I wanted to get a larger perspective before doing anything. It has been important to me to be able to feel that I am not a freak with a condition to hide (and important to me to model that for my children). At the risk of sidetracking any discussion, I do believe it is just hair and doesn't define me. It is hard for me to imagine just how having a wig wearing or baldish mom could lead to a kid being picked on for years. (Would a mom in a wheelchair hide? A fat mom?)

Again, thank you all.

I have been surprised and saddened by so many of these responses. You appear to be a thoughtful person with a strong interest in doing what is right for your family. You don't strike me as seeking personal fulfillment at the expense of your child. Instead, I hear the intentions of a mother seeking to integrate her reality into the lives of her family, and into your shared role in your broader community.

I do agree with the advice to discuss with your son first, and if he is very opposed or concerned either address his concerns or save the visit to his class for a later time when he is more amenable. Make sure you don't surprise him with your content. However, presuming he is comfortable and feels involved, this is a special opportunity to work together with him on something that can be meaningful for everyone. 

Here's another idea: Have more discussion with the teachers and administration before proceeding. This sounds like it may be part of a bigger program, so understand who has spoken before and the kid's reactions. Talk about what is developmentally appropriate for these students to hear and understand. And have a game plan for actionable, relevant learnings you can give the kids to help them process your story and take action to be more inclusive.

If you meet this criteria, I see no reason this can't be a positive experience for everyone.

p.s. Sidenote: I am deeply saddened to see the fat shaming happening in this conversation (re: references of "fat" as a mean word, or calling out the embarrassment of a fat mom, among other comments). Accepting baldness as beautiful is one act of body positivity, but it doesn't happen in a vacuum. 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.



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