Replies to This Discussion

Permalink Reply by Cindy (Duncan's Mom) on March 13, 2010 at 10:50am

June, I have a little guy that is 5 years old. He started school this year. He has hold alopecia universalis since about 18 months. He sometimes wears a hat and other time does not. He has coped very well. He does ask why people stare at him, but he says that his friends in his class treat him normal and do not stare. Before school started, we met with the principal and ask for a list of upcoming students that included parent's names and addresses. We sent a letter to them explaining Duncan's condition. We included a picture of Duncan as well. We asked the parents if they would go ahead and let the kids know about Duncan before school started. We felt that at this age a lot of the questions would be more out of curiosity so if the kids were already aware there would not be as many questions. We had parents thank us for the information and the kids acted as if they already were Duncan's friend when school started. Good luck to you! I am sure that Isla will do fine. I will be praying for you both! Cindy

Permalink Reply by june edwards on March 13, 2010 at 4:03pm

thanks for the advice i am sure she will be fine she is going with some of her friends from nursery school we have a meeting with the headteacher of her primary school on monday so hope to get more information then.

Permalink Reply by Tara- mother of Presley on March 13, 2010 at 12:08pm

My daughter got alopecia when she was in Kindergarten (she is now in gr.2) and we got the book "The Girl with no Hair" from the National Alopecia Areata Foundation. We read it to her a few times and then had the teacher read it to the class. We also sent a letter home to all the parents of her classmates explaining her condition and thanking them in advance for helping their own children understand what our daughter was experiencing. It helped put the onus on the parents of potential bullies or teasers to potentially prevent it from happening at all. It also helps them to understand her condition as one of the parents in Presley's class kept their kid home from school one day because they didn't want to get the kid with cancer sick. Since then, Presley has had very little trouble with teasing and the kids have been so supportive and accepting. I hope that helps and good luck.

Permalink Reply by june edwards on March 13, 2010 at 4:04pm

thanks nice to hear from other parents who have children with the same condition as isla sometimes feels she is the only one with this

Permalink Reply by Lisa Leppert on March 13, 2010 at 12:37pm

My little girl will going to Pre-K at the elementary school this year, but has attended a private pre-k for the past two years. She has had alopecia totalis since she was 2 ( she will be 5 in Sept). Each year I speak with the parents at open house and tell the teacher if anyone has any questions to ask. Alexandria is great about it. If she goes into a room with new peopleshe will happily announce #1 I am a girl!!! and #2 I have alopeica. Lets play. I have made sure not to make an issue of the condition and I am raising her to believe in herself and how God made her. We are going to get a shirt made that says God only made a few perfect heads... The rest He gave hair. It is her little motto.

Permalink Reply by june edwards on March 13, 2010 at 4:07pm

my daughter is similar and will also tell people what she has , i love your motto of God only made a few perfect heads... the rest he gave hair. i will tell her this tomorrow i'm sure she will love it as she attends sunday school and understands about God. Thanks

Permalink Reply by Marte Carlson on March 21, 2010 at 9:37pm

I love this!!! My daughter is fiesty too!! I am totally going to have her do this when she starts school too. I am telling you what....these little ones that are coming up with it, and the openness of this condition.....the WORLD is gunna know!!! We bought our little girl a couple of shirts that are just awesome. One says, Alopecia Areata.....look it up. Another one says, Does this t-shirt make me look bald? And another one says, Bald chicks rock! We get some many compliments and it opens up the door for me to talk about what she has, and educate parents and kids!!! Love your motto!!!!

Permalink Reply by Kristin Devies on March 26, 2010 at 11:42am

Marte, I love the T-shirt idea! My little girl is only 21 months old right now, but my main concern is making sure she grows up with plenty of self-confidence. She was just diagnosed last week, so I'm pretty new to all this. It's so great to see parents with such positive attitudes. I'm convinced that keeping a positive attitude will make all the difference in her life!

Permalink Reply by june edwards on July 15, 2010 at 4:51pm

just thought we would say that the saying of god only made a few perfect heads the rest he gave hair to has come in very useful. My 8 year old daughter has written a short book about her sister isla and her alopecia and in it she says how they now sAY to their sister to say this to people . She was interviewed by newspaper and the scottish news and all seem to think this is a great saying . It seems to catch peoples attention in a positive way , so thank you for sharing it it has made a difference.

Permalink Reply by Jen Deletto on March 15, 2010 at 9:12pm

The Children's Alopecia Website has some great information about how to talk to schools and sample letters. We have also read The Girl with No Hair. It is beautifully written. the NAAF has a video also and a school packet that you can request.

My daughter is also 5 and her Alopecia just came out in December. She starts kindergarten in August and we just briefly met with her guidance counselor at her elementary school when we went for parent orientation. We went in, shared our story and asked if she could wear her hat if she wanted to. She loves her military styled hats and wears them often. The school staff were very sweet and said they would address it however we decide. :) Good luck and feel free to message me...sounds like we are in the same boat!

Permalink Reply by june edwards on March 16, 2010 at 8:30am

thanks for the advice, we met with the school yesterday and it went well the school well tell the children if needed what iis wrong and will address any teasing. isla full of confidence and very fiesty so am sure she will cope fine. I think at times she feels she is the only one who looks like her as although we have shown her pictures of other people with alopecia she has met any children. the girl with no hair is this a book and did you get it from childrens alopecia website?

Permalink Reply by Jen Deletto on March 17, 2010 at 7:23pm

I got The Girl with No Hair from my local library actually. It's very reassuring once you do talk to the school staff - i felt a huge weight lifted off of my shoulders after I did!

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