Replies to This Discussion

Permalink Reply by Sharon on July 26, 2008 at 12:51pm

Hi there this is something I have been really thinking hard about the last few days. Nicole is pretty much AU and has worn a wig to school since the beginning of this year. We have told her teachers and there are some who do know about her alopecia. At present she is waiting for a freedom wig to arrive so has had to have the last little bit of hair shaved off, in the last week we have also noticed that her eyebrows are going as well. Our reaction has been ohhh perhaps we should ask someone to come in and talk to her class, but then another part of me is wondering is that really necessary, I have talked to her about it and she doesn't really seem to worried about telling everyone and I don't really see that she should have too if she doesn't want too, perhaps there will come a time when she has too. I don't know this is a really difficult decision it's not like we hide it because I do tell those people who need to know I just don't see the need to make her personal business common knowledge. It's a hard one my gut feelings are to just go with the flow and if it becomes a huge issue then we will deal with it. I am hoping that her new wig will give her more control in the fact that she can tell those people that she feels comfortable telling compared to having her wig yanked off by some incensitive kids who needs to curb their curiosity..........Regards Sharon

Permalink Reply by Montica on August 26, 2008 at 2:36pm

I can tell you from experience that sharing right away is the best route to go. It is also probably the hardest in the beginning. We chose not to share my daughters hair loss due to her concerns. She began losing her hair at 13. Teenagers are some of the worst people to have to deal with. My daughter was popular and a school athlete, unfortunatly, this did not help with the situation. Popular kids are so fickel. She was teased and tormented to the point where we had to pull her from school. We home schooled for a year. When she felt she was ready to go back to public school, we proudly enrolled her only for her to end up tormented again. This time 2 girls jumped her so they could rip her wig off in front of everyone. It was more interesting to kids to gossip about what they thought they knew. Adults would say things because of lack of information that later they would regret. Hiding it took a toll on our family. She would cry constantly because kids would talk and she would try her hardest to deny and brush it off. Sure, the same things happen now but on a smaller scale. Now that the whole school knows its not as much fun to talk about. Now that she's not trying to hide it, she is free from the burden of holding a secret that was so private to her. I can not tell you how proud I am of the person she has become when it comes to her hair loss. She is only 16 now but she is strong and confident. She no longer has to walk the halls wondering who is saying what or afraid of her wig coming off in front of people. She has alopecia and she doesnt care who knows it. It is really hard on you to hold it in and its hard on the kids. Either way its going to be difficult. From what i can tell its much easier for you to explain it to grade school kids than it is high school kids. So to answer your question on why.... Its simply because these parents are trying to do what they believe is in the best interest of their child for what the future may bring. In our experience, I believe it would have been easier for us if she would have just told everyone from the beginning. I do want those who arent aware that Hair Club for kids provides free wigs to kids under the age of 18. Its a wonderful program we have been a part of for a year. They glue it on for you. My daughter has diffused hair loss and they were able to glue it on for her. If you already know they are having the hair loss and you want to keep it a secret, I would suggest beginning the wig sooner rather than later. It will help with the hiding. But hiding is hard emotionally. If anyone would like to talk to my daughter about her experience and get her first hand feelings on the woulda, shoulda, coulda's, please feel free to post and I will have her reply.

Permalink Reply by Sharon on August 26, 2008 at 2:50pm

Hi Montica I am so sorry that your daughter had to go thru such a horrible experience, that would and is my worse nightmare.

I also agree that every parent does and wants the best for their child. Even thou I think that what is best is for my daughter to tell her class and we have had some wonderful people offer to come in and talk to her class, she has read posts on here about the pros and cons of telling or not telling the problem is that she isn't ready and doesn't want to yet and I have to respect that. She is gettting a new wig in a few weeks and has been discussing the prospect of maybe telling her class when that arrives so who knows what the future will hold, I really hope she does decide but I am not the one living her life I can be here to support and guide her but she is very much her own person. I guess it will all unfold somehow in time. Anyway your daughter sounds like a very strong young lady (as is mine) alopecia has a way of making our children grow up before their time.

Take care
Sharon

Permalink Reply by Montica on August 26, 2008 at 3:02pm

You are so correct in having to follow her wishes. That is exactly what we did with Myranda even though from the beginning we told her it would be much easier to just tell. They do have to come to terms with it in their own time. I used to hate it when people I did tell would say things like, "well tell her to just go without the wig, she should be stronger and just get over it." Oh my! I had to hold my punches many times. I would always say, "You go out and shave your head tonight and then tell me how easy it was to go without hair. And you are not a teenage girl!" that would usually shut them up. Its so emotional to read about parents who are now going thru what I went thru what feels like so long ago. I wish you all the best of luck with this journey. It really teaches you a few things about people.

Permalink Reply by Montica on August 26, 2008 at 3:07pm

Also, since they are just in Kindergarten, when and if she is ready you can really make it seem like a cool thing. I would suggest working with the school and having a visit one day. If you have a wig shop that would loan you a few wigs for the day it would really help out. You can let the kids try some on and make it a fun day. Tell them how your daughter can change her hair now all the time without having to wait for it to grow back. She doesnt have to get up early to fix it. Its like being a rock star or Hannah Montana!! She can be a new cool person everyday if she wants to...I mean hey, even one of the jonas brothers dated Miley Cyrus and she wears a wig. I think the class would totally relate to that at this age.

Permalink Reply by Margie on September 7, 2008 at 7:03pm

My son (9 years old) developed alopecia during the summer. In 1 1/2 months he has lost 75% of his hair. We really struggled with what to do about school starting. We went out and bought him 2 wigs. This was the way we were going to go as we didn't want anyone to know - we were so fearful people would tease him. I then did more looking into what others have experienced and sat down with him. I toldhim that I didn't know what the best way was but I thought that it would be a good idea to go ahead and face this head on. He is extremely athletic. If his wig were ever to come off I don't think there would be any way to control the teasing (that would almost be like a boy wearing a dress to school). We decided together to go to the school and get permission for him to wear a hat. Of course kids would want to know why he got to do this and they couldn't. The school suggested that the district nurse come into the "behavior assembly"that they have at the begining of each year and teach the kids about what was happening to him. We did this and I think it was the best decision we could have made. I sat at the back of the room as the nurse asked who knew Casey. About every hand went up. She then told them what he was going through. The kids faces showed me that they were imagining what it would be like if it happened to them. They were then told what to do if someone was teasing him. We had one incident were he was teased. It actually turned out to be a good situation. One of his friends turned the kid in to a teacher and that kid was sent to the principal's office where the parents were notified. Casey now knows that he has some wonderful friends that will stand beside him and stand up for him. He doesn't even bother wearing his hat and doesn't worry. It has relieved so much stress and as that might be a contributing factor we are very happy. For us this was the best decision. No more worrying.

Each person needs to weigh the social situation they will face and work it out. I just always want to make sure my child is involved and in agreement with all the decisions we make in regards to his alopecia.

Kids are awesome and sometimes handle this stuff so much better than the parents (like myself). I'm still trying to come to grips with the fact that as his mom I can't make this go away. I wish I could take it on myself instead of him. Someday I know I won't cry at night and will be able to deal with it as great as my son does :)

Permalink Reply by Shana and Taylor on September 26, 2008 at 9:17am

Hello,
I understand your concern and need for privacy. I was very confused on what to do also. My daughter is 10 so I let her make the ultimate decision in telling her teachers and classmates. I talked to the guidance counsler and she informed me that in her experience that she found the kids embrace and sort of "protect" the child. We decided that the guidance counsler would talk to her class and explain what Taylor has and alittle bit of what AA is. She did a wonderful job, she went out and bought a few childrens books and read them to the class, the class asked questionsand then the next day when Taylor went back to school all the kids hugged her and said that not to worry about anything. My daughter felt so much better that everyone knew about it because she felt like she wasnt "different" anymore.
Im not sure that this helps you but in my experience telling people has taken the stigma and awkward feeling away.

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