Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on December 20, 2009 at 12:33am

You'll get the most personal, helpful and responsive advice directly from a mom who has been through exactly the same situations if you contact Betsy Woytovich at Childrens Alopecia Project: childrensalopeciaproject.org or email Betsy at CAP4U@verizon.net. She will also take an active role in helping you talk to other parents in your area. The feedback I get is that CAP is progressive and hands on available to parents in a ready response mode more than other organizations.

Betsy and her husband Jeff are an excellent resource for getting strategies you can use for how to talk openly and fearlessly about what alopecia is and isn't to family, friends and strangers so your child won't be subject to bullying or teasing.

The antidote to feeling worried ( for families as well as adults who have aa) is to be pro-active. Once you can connect to CAP ( as well as parents on AW who've taken the pro-active approach) you'll feel relieved because you'll have specific tactics to put into use. It's the feeling of helplessness before knowing the strategies that creates anxiety. And while it's a bumpy road at the start, this all gets easier and easier as time goes on.

Permalink Reply by agnes faux on December 20, 2009 at 2:58pm

mine was the same way do u have hairclub for men and women where u live if so call them the give customized wigs to kids from age 6 to 18 no cost, audrey has a wig and feels a lot better, it fits her head and its double sided tape on it. and its human hair

Permalink Reply by Cindy (Duncan's Mom) on December 20, 2009 at 10:02pm

Saida,

My little guy is 5 years old and in kindergarten. He has decided on some days not to wear hats as well. I let him make that decision. Other than we asked that he wear it when outside to protect him for the elements. My little guy does notice people staring. He has asked why they have to stare. He has recognized that his friends don't stare, but that strangers are the ones that stare. I think at some point they (our kids) have to deal with some of this on their own. We make sure that Duncan hears that he is special -- that he is beautifully and wonderfully made. We explain that people stare just because they don't understand (like he does when he sees someone in a wheelchair). We cannot always be with them and they are going to have to know how to deal with these situations. It is so hard though!

Cindy :-)

Permalink Reply by Larry on December 21, 2009 at 2:38pm

- Our son started with noticeable alopecia around the same age. His school doesn't allow hats to worn in school and he eventually lost all his hair to AU. When AU first started the school allowed him to wear a hat for the remainder of the year, which got us through the rough beginning being new to AU. The next school year started and my wife & I thought he should abide by the school rules be cause he is not any different than the other children, he just doesn't have hair. We felt that by wearing the hat made him stand out more than him having no hair. Also it allowed the whole school learn what alopecia is and my son has had no problems with bullying or teasing. He does wear a hat out in the sun and the cold to protect his skin and keep warm. he also does wear a hat when he goes some place new and feels there may be alot of people who don't know about Alopecia, but if he is with people who now his condition he will go with out and meet new friends. We try to teach proper etiquette, like no hats in restaurants, the house, ect... We still wonder if he will grow hair and how it will affect relationships, but the more we learn and the more people we meet, like on Alopecia World, I personally worry a lot less. Hope this helps and the Childrens Alopecia Project (CAP) is a great resource, I only wish we were closer to them; but I have talked to them by phone and internet early when my son was first diagnosed. Wish you the best and have a great holiday and New Year.

Permalink Reply by Cindy on December 21, 2009 at 7:23pm

Hi Saida, Samantha was in Kindergarten when her hair began to fall out. While she always covered her spots and then transitioned to a wig the kids did notice her lashes and brows falling out. I have to say the children in her class were nothing but supportive. They would make a comment about the lack of hair followed by it does not matter because you are my friend and your still Samantha. Those statements made her feel good. Now, they tell her they are excited to see her hair coming back and that they are happy for her. You see either way the kids in her class support her. The kids in her school don't look down her and no one has ever said anything hurtful to her. It is all in how our carry yourself. Give you daughter confidence and she will show it to others in her world. Keep your daughter active in the communities she enjoys. It will help build her self esteem and confidence. If it is one thing I learned it is that you can't make your child wear a hat or wig if they don't want to. Your daughter may very well just want to be accepted they way she is and she is not afraid to show it. The best thing you can do is support her and let her make the decisions.

If you haven't contacted CAP you definitely should email Betsy. They will be holding their 2nd Alopeicapalooza this summer at a camp in PA. Betsy may also be able to help you connect with families in your area. It is a great organization. The kids come first.

If you want to try something different from a hat I suggest www.hatswithhair.com. Sam loved wearing them. They have headbands with hair sewn into them. I recommended the microfiber ones.

Hang in there! Cindy

Permalink Reply by Ellie on December 22, 2009 at 8:08pm

My daughter is almost 5 and she has been wearing hats and headscarves for over a year now. Haley has so many scarves and head coverings that she could never be bored with them. I let her make the decision because she has to be comfortable however now that the weather is cold I make her wear a a hat or something to cover her head so she doesn't get her head to cold. I have actaully bought hat for her to wear in bed as well. We are talking about getting a wig right now she goes back and forth about wanting one. I am looking at buying through Children with Hairloss.Right now they don't have money to sponsor but you can still buy though them. I am really worried that kid will be mean to my daughter as well. Haley's School is having Jeff Woytovich from CAP come into talk to the kids in January. I think that educating the parent will work in the school because if the parents know what is going on they can talk to their kids about it and will in turn make a better environment at school. Another good thing to do is give your daughter the words that she needs to be able to tell those people what she has. Good Luck.

Permalink Reply by Jen Deletto on February 15, 2010 at 10:40pm

How as the talk that Jeff had with the students at Haley's school? I have spoken to him on the phone and he sounds amazing! My daughter starts kindergarten in the falll and I would love to pass on the information about him speaking to her school.

Permalink Reply by BaldGirlsDoLunch.org on February 15, 2010 at 10:47pm

Have you checked with Wigs for Kids?

The most universal truth that parents find is that if they get out front and tell school, teachers, friends, and parents the correct information then their child is not traumatized nor bullied. The issues of bullying and teasing arise when families try to keep alopecia a secret.

CAP has good materials and when you call CAP you're speaking directly with a parent who has a child with alopecia.

Sounds like you have a lot of style options, but if you need more resources for hats, scarves and how to tie them or with make-up for eyebrows ( BGDL has a line) I can offer suggestions.

Thea
BaldGirlsDoLunch.org

Permalink Reply by Saida Z. (Ariana's mom) on February 16, 2010 at 8:28pm

thank you Thea. i would really appreciate if you could let me know how to tie scarves my daughter loves to wear them but after a little while its falling off, for now she still wears her hats to school a little girl told her it looked ugly so she rather just cover it up. I finally found a salon close to my area that does custome maid wigs hopefully we can get something that will stay on cause she is a very very active child

Permalink Reply by BaldGirlsDoLunch.org on February 16, 2010 at 9:09pm

If you can find scarves or fabrics with lycra in them it stretches just a tiny bit and grips the head AND any tie or knot grips itself better. Believe it or not I just saw some at the "dollar store". If you don't see any, send me a private email and I'll be glad to drop some in the mail for your daughter.

For a little girl I think the bandana look is one of the best.You can get it tight and it has the least amount of weight/drag. If she likes the side tie like in the photo, a stretchier fabric will work best. Try to keep it on the shorter side....the longer the tails of the scarf the more weight it has to pull off the head.

I have a way to tie bigger scarves very firmly but don't have a demo video made yet.

A product to try is hatswithhair.com..they have different styles of attached hair and now have a type of synthetic fiber that can take high heat. Many are in child sizes.

If your daughter is very active and has a bare scalp, the most secure wig is the suction type. Anything else runs the risk of coming off even with wig tape.

She may decide she doesn't want to be bothered with anything on her head some days and she'll let you know when that's on her mind.

Thea
www.baldgirlsdolunch.org

Permalink Reply by Saida Z. (Ariana's mom) on December 25, 2009 at 5:42pm

Thank you everyone for your comments it really helps a lot comming from people that are going thru what im going thru, no one can understand better. Im going to let my little girl decide how she wants to deal with it, we are on winter break now but when she goes back to school im going to have a talk with her teacher let her know whats going on so it doesn't catch her by surprise or the kids they've never seen her w/o hats. Hope everyone had a Marry Christmas and I wish you the best for this comming year:)

Permalink Reply by terri on January 12, 2010 at 9:49am

Saida, I love reading that you are going to let your daughter decide. From what you wrote, it sounds like your daughter will do just fine in school without anything on her head. I think it is important for the child to feel like they are in control of something that we can't control. She sounds confident. As her Mom, I know you are aware of the stares that your daughter doesn't yet see. Help her by making her transition into the classroom as smooth as possible by talking to the teacher (you said you plan to). And we had Claudia's school send out a letter to each of the parents in the Primary school before classes began explaining alopecia and that it wasn't contagious and that we chose the school because of their high standards of individual respect and dignity. It was a two page letter and Claudia never experienced anything negative in the years at school.
We also did role-playing at home and taught her how to explain alopecia.

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