Comment by SabineTawni on September 1, 2016 at 11:13am

Fiorina 161, Excellent point!  Every child deserves an education.  If the public schools cannot provide it in their facilities, then the child should be able to get it someplace else (private, cyber, homeschooling).  

Comment by Wigsthatwow on September 1, 2016 at 12:06pm

I'm sorry you have to endure this unfair treatment of your daughter. You mentioned that you purchased wigs as an option, but have you considered hair replacement alternatives. There are a few type options, but the one that I have use on my clients, involves net-weaving, creating a style based on the clients features, and customizing a cut, where the finished product is so natural, and undetectable to being artificial hair. Lasts 3-4 months wirh regular maintenace, and most insurance companies pay for the service. I pray your load gets lighter and God leads you to make the best decision for you and your daughter. Be Blessed!

Comment by Karen on September 1, 2016 at 12:57pm

Kelsey,it is called Its Vital but please like I said I am not saying it will work 100% but it did work for my son. I am not a Distributor anymore but not because I don't like or believe in the products. If you have questions please feel free to call or text me at 906-370-9095.

Comment by JessicaU on September 1, 2016 at 1:13pm

I completely agree with Anne's comment. Build her up. Some kids get bullied for having glasses while the kid right next to them has glasses and doesn't get bullied. The bullies pick on certain kids that seem to be affected by their comments. She needs to be as strong as you can make her so no matter what they say it doesn't break her. Role playing and coming up with as many answers as possible was great for us. They should be educational responses not mean come backs. Make it fun for her. Talk openly about it. Teach her that if people stare she should smile back. The only reason people stare is because they don't know why she has no hair or they've never seen anyone with no hair. Build her self esteem as much as possible. I also think that since she is already having problems you need to get the guidance counselor involved. This is her/his job! Request a meeting with just you and the counselor. Ask for her to help you address the class. Bring books that she can read to the kids. Since she wears wigs and hats maybe with the help of the guidance counselor you could do a class room presentation. Have your daughter sit with you and maybe a friend or two with her and they could all wear different wigs or hats and show how Alopecia can be fun. She has the power to change her look anytime she wants. Maybe one day she wants to be brunette and the next a red head or a blonde. Pick up some Halloween fun colorful wigs too. She can have pink hair, purple, or blue and maybe her friends can wear them too. Make the other kids see that it can be a positive. If she is hot she can go bald. No one else can do that! She can take a shower or bath much faster because she just has to wash her head and she never has to wait for her hair to dry. Bring in a poster show other people to have alopecia who are famous. Show movie stars, athletes, and singers that have alopecia or wear hair extensions (almost all of them), wigs, and hair pieces. Explain how common hair loss is. Explain that the majority of them sitting in her class room will experience some form of hair loss within their lifetime. Remind them that they don't make friends with someone because of their hair. It's what's on the inside that counts. You're friends with someone because you both like the same sports, you both like the same video games, you like to skate board, you like the same animals, and/or you have the same sense of humor. Not because of their hair or lack of hair. Hair is not what defines you or what defines who your friends are. Send home a letter to all of the parents explaining what Alopecia is, your expectations of how you want the other kids to treat your daughter, and how you hope that with some education and the support of the other parents that her class mates can learn to support her instead of bullying her. Ask the parents to please take some time to talk to their children about Alopecia and bullying. Don't be afraid to be a little vulnerable people need to learn empathy. Over 6 million people have this condition and it can affect anyone at anytime. I hope this helps you and your daughter. Sending you both lots of love!

Comment by Devonpolignani on September 1, 2016 at 1:29pm

Hi there!!!
I am so sorry to hear what your daughter is going through and you as well because feeling helpless as a parent is an awful feeling. I just want to talk to you from the perspective of someone who went through this EXACT SAME SCENARIO. I am now 24 years old. When I was in elementary school I slowly started losing all my hair and in middle school it was gone. I wore wigs and I was tormented I was bullied my entire school career even through HIgh school. Kids don't understand empathy they just don't they mock and make fun of what is different. But honestly this was the biggest blessing I feel I could ever receive in life because this scenario helped me grow into what I believe a wonderful person. It was hard and I did not want to live at the time but with the guidance from my mom who would take me to alopecia conventions and help me realize that other people have this, while the majority don't she made me realize that this is what makes me ME. It is what makes your little daughter different and I think if you and the rest of the family stress this to her maybe it will help. Tell her other people are afraid of different but that doesn't make her any less special. Because I do believe that this was a gift given to me to understand empathy, people should never be judged for being different. It helped me understand compassion, we all deserve compassion. And it taught me strength if I could make it through what I considered way to much for any child to go through I could make it through ANYTHING. I joined the military, now I am in college and have a baby of my own and I have so much joy in my heart I don't have time to think of my bald head! Sending you and your little one love ❤️

Comment by MelB on September 1, 2016 at 1:59pm

My son lost half his eyebrows at age 7 (2015).  On May 4th 2016 he started losing his hair... today he has nothing left.  Universalis.  He is 8 and in grade 3.  We live in Québec, Canada.  I wish my son had some French speaking kids close by who he could share with.  He feels so alone.  There is no one.

Having said that, I try to concentrate on the fact that we ALL have a bunch of things we hate about our bodies but have to live with them.  I get pimples every month... at age 41 it totally sucks, but I have grown to live with it.  Some things are worse than others obviously, but you get the idea.

If he realises that we are all different and all have something we don't like, maybe he won't feel so alone.  For some it is their heigth, their weight, their eye or hair colour.   It is what makes us all unique.

My son won't talk to anyone about it except for me.  On Sunday I suggested we buy him a private journal with a lock so that he could write anything he wants.  (After going to 6 different stores we finally found 1 with playfull aliens on it rather than girly things)  At school on Tuesday, they had a science day where they did experiments with hair static.... can't do it without any hair!  He was extremely upset, but writing how he felt in his journal on Tuesday night was a great releif.  He went to bed smiling after all. 

He is in a different school this year, a close knight bunch of students it looks like too.  I think he will be ok.  Still, as he is NOT ready to talk about it, I chose to tell everyone on Monday night at a Parent teacher meeting so that the parents knew what to say if their kid asked them about the boy with no hair.  He is not sick, it is not dangerous, nor contagious, purely esthetic....but it sucks and he feels bad about it.

He wears a bandana everyday, everywhere.  We finally convinced him to get different colours and not just the bright orange he wore everyday this summer... It draws less attention if it matches his outfit.   Plus, it is fun.  Without it he says he feels naked, like if we removed his underwear. :(

We also try to laugh about it here and there.   He went to a special camp 1 week and the list said to bring shampoo and a brush... I read out loud and looked at him...he laughed so hard we all started laughing too.  Also, taking off bandaids no longer hurts.   :)

Try and stay positive.  Convince your daughter the nasty class mates are the ones with the problem.  These people must suffer themselfes and must be unable to express their own pain, so they take it out on others.  It is difficult now but it will make her much stronger than all the nasty people.  Try and block them out.  Like an "eject' button on a video machine.  Eject the negative and Record the positive.

We may be going to the Alopeciapalooza in Maine, USA next June.  There will be a bunch of alopecia kids there (CAP - Childrens Alopecia Project). 

Comment by Angelynds on September 1, 2016 at 2:03pm

My daughter is 8 and in third grade and we are going to alopeciapalooza too!! We live in indiana.

Comment by SabineTawni on September 1, 2016 at 5:52pm

"He went to a special camp 1 week and the list said to bring shampoo and a brush... I read out loud and looked at him...he laughed so hard we all started laughing too…... 

MelB, Thanks for the post.  Ironically, just today as I was coming out of the supermarket, a young lady was inserting some sort of coupon in car shields.  She was sweet, smiled, and handed me one as I was about to enter my car.  The coupon was from a hair salon across the street, offering discounts for haircuts, coloring, and permanents.  I smiled and said, "Thanks so much, but I don't have any hair".  (I wear a wig, so I took it as a compliment that my wig was very realistic-looking).  She gave me kind of a puzzled look and smiled, telling me to have a good day.

Comment by Renee on September 1, 2016 at 8:29pm

Your school has an assembly and shows all the students this video  https://www.youtube.com/watch?v=E1RwDayaqNU     Maybe even email the parents or send the students parents information.   More help  https://www.naaf.org/advocate-for-change/advocacy-in-schools   .   I think these would have helped me very much when I was a child going through what your child is now.  But back in the 80's this was not available yet.  Try and keep her in school if possible.  Having gone through this myself, I truly believe that this will do the trick.  Kids are really more curious than cruel.  Once they are informed of whats going on, they will understand and likely lay off.

Comment by Akbama2007 on September 1, 2016 at 9:35pm

Thank you all so much for your advice! I went to her school today and the staff was very supportive the nurse showed a video to her class on alopecia. I'm am really hoping this helps. I will definitely be checking out children's alopecia project and also work on getting info out to other kids at the school. Thank you all again so much for the input this helps a lot!!

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