Replies to This Discussion

Permalink Reply by Rose Marie' on April 19, 2009 at 3:52pm

Hi

My daughter was a little older than your son when she was diagnosed with AA. (12 years old) I felt just as you do. How am I going to protect her and keep her safe so her personality grows without undue attention being paid to this condition. She had only lost her hair not really the defining feature of who she was. Sadly society does not always look at our children in this way.

One of the things that helped was education of everyone around her. She was a little to young to do this herself so I took the bulls by the horns and immersed myself into everything I could to do with alopecia. I contacted everyone I could in my area who had alopecia. i introduced her to as many people as I could dealing with this condition (they were invaluable). I went into her school and spoke to her teacher. I passed onto the school all the information that Naaf kindly gives out with regards to children and school. During this process I also talked to my daughter constantly about what choices she could make and the consequences of those choices. Because with alopecia there are always consequences (no matter what you do). I found as long as she was prepared and forewarned she coped incredibly well. She decided she would like to wear a prosthesis (Freedom Vacuum). This choice didn't take away the fact that she had alopecia but it did give her a chance to be a little annonymous before she decided who was trustworthy and who wasn't and who she was going to open up to. This isn't the only choice available, but it did work for us.

My daughter is now 18 and has gone through those terribly difficult teenage years where she was trying to find her niche in the world. She has excelled at school and in her activities of choice (music, piano and singing). She is now at University studying chemistry (majoring in Medicinal Chemistry). There were difficult times and I'm sure there will be again with regards to this condition and her. But as a family we were able to support her and help her through until she found her own legs and took off running.

There are some other lovely mums and dads here that I'm sure will pass on their experiences as well.

I just wanted to assure you that even though this condition is very challenging for our children it is not something that can't be managed so they can be whatever they choice to be.

Hope this helps a little.

Rosy

Permalink Reply by Sara and William on April 19, 2009 at 4:16pm

My son is slightly older than yours, but has only had AT for a couple of months, so I'm afraid I won't be a lot of help. The thing that really seemed to help him was getting a Sphynx. I don't know if that's something that would help others, but for him it was half consolation prize, half kindred spirit (in case you don't know, a sphynx is a hairless cat). He likes having "another family member with alopecia."

He has been somewhat the opposite of the mom above, as he hasn't wanted me to come talk to anyone. He prefers to deal with it himself, mostly by shrugging and giving some variation of "I don't feel like talking about it" or "I have alopecia." Every once in a while he comes up with some off the wall comment, like he decided to be bald, or he got tired of eyebrows. I make sure he knows I'm always here if he wants me to do something for him, and that I'm happy to get him wigs or hats as he desires, but that I'm happy with nothing if he's happy with nothing. I think he's doing ok. I guess I won't really know for years... Another thing that really helped was seeing pictures of people with Alopecia. In fact, the front cover of the winter issue of NAAF with Matt Kelley and his sphynx was where the idea for the cat came from.

We don't live particularly close, but the AA registry asked us to participate in their study, and we chose the option of coming to the twin cities for the exam and blood work, so we will be there in early August if you'd like to meet.

--Sara

Permalink Reply by Cristine on April 19, 2009 at 4:32pm

Thank you both for the information,
I have many discussions with Ben regarding his alopecia, I have spoke with the teachers at school and I asked my son if he wanted to discuss his alopecia with this classmates. He is more like Sara's son than Rosy's daughter, he chose not to discuss his alopecia with others. He is only 5 and I am not sure that he completely understands that the kids are actually aware of the fact that he is bald, but I am going to let him make his own decisions regarding who he wants to tell. I think the hardest part of AU for him was losing his eyebrows and eyelashes, the boy had beautiful eyelashes everybody always commented on the length of his eyelashes; even men. Ben is active in sports, he loves to play hockey and football and I am hopeful the more friends he makes the easier it will be for him to cope.

Sara, I would love to meet with you and your son when you come to visit in August, I would also be interested to hear about the study and who you are seeing here. Are you going to U of M for testing?

Permalink Reply by Sara and William on April 19, 2009 at 9:47pm

http://www.alopeciaworld.net/forum/topics/2022678:Topic:4355

I don't recall the name of the head researcher, and it's not in the post. They're sending me a packet of info/forms before the actual appointment, so I'll have more information then. It's just a informational study, not a treatment study, so nothing to get excited about. It's the sort of thing you do to help the next generation of kids, not this one, unfortunately.

--Sara

Permalink Reply by Penny++Amy's Mom on April 20, 2009 at 8:49am

Hi Cris
My daughter was 9 years old when she was diagnosed with alopecia. All of her hair fell out in just a matter of a month.
Kids at school made fun of her, so I visited the counsler, she went to Amys class and explained to the kids why she did not have hair and then asked each child to explain it to anyone who felt they had to make fun of her. she did this for a couple of years to each class. By the time she reached middle school she had a lot of kids that were willing to stand up for her and tell them to stop making fun of her. This year she started high school with a good attitude and a lot of support from friends. the principal called me one day to let me know that there had been kids in her office wanting to know why she got to wear a bandanna while they cannot. Her simple answer was to shave their heads and then they were more than welcome to wear a bandanna, she says no takers so far. Amy turned 15 today and is a very happy and confident girl. My prayers go out to you and your son that he is able to learn to cope with it. I tell her that people with hair have it there because they do not have such perfect heads.

Permalink Reply by Tracy on April 20, 2009 at 1:23pm

Ugh. my 6 year old daughter has Alopecia and just got her first wig. She LVOESher wig, but Im so AFRAID of her wearing i to school I know of older children who get their wigs pulled off etc. Kids are S O CRUEL! Why? i kept her home for 4 dyas after she got the wig because me, a selfish mom was afraid she was going to be teased. And today she went to school for the firsttime with the wig. She came home for lunch and the wig cap was puled forward like she kept pulling on it. I asked how it went and she said good. That kids asked if she dyed her hair etc and she just said to people, "no, its a wig" and didnt try to hide the fact she is wearing a wig like I am. I dont know why I am embarrassed for her when clearly she does not care what other people think. So really, my advice would be to go with the flow and do not treat it like a disease, becuase your child is just a child and they kno no better. If we never mentioned it they would have no clue that something was so different about them. I think we as parents who have been through the cruel times of high school just fear too much for our babies and do not realize that they probably know how to deal with it better than us. just don't focus on it, our kids are stronger than we give them credit for.

Permalink Reply by Tracy on April 20, 2009 at 1:25pm

My daughter is 8, I accidentaly siad 6 :-)

Permalink Reply by Lisa Bourgeois on April 20, 2009 at 3:44pm

My daughter was just a little bit older than your child when she developed Alopecia. She is now 8yrs old and a very happy confident bald child, she does not wear anything on her head. What really helped her were books - she loves to read! There are actually many books out there - picture books even. She chose to have the teacher and guidance counselor talk to her class without her there. I think educating people about the condition is key. At 5yrs old, kids are so accepting and once they understand why your child is different, they just go back to playing. I do think participation in sports helps them build confidence too! Good luck!

Permalink Reply by Cristine on April 20, 2009 at 9:46pm

These are all great words of wisdom, thank you so much for your responses. I do really like the idea of having the counselor at school talk to the class without him there. I will see if he wants to do this when he is in first grade.
Thanks again.

Permalink Reply by german mama in NY on July 25, 2009 at 10:43pm

Hallo Lisa,
please can you give me the title of the book(s) my dauther is 3.5 years old, but she loves to listining
stories, so if you have a good tip about a book, I will be very happy, greetings, Sabine.

Permalink Reply by margaret and nicole on August 2, 2009 at 12:01am

Hi Lisa, my daughter is 3 and I would love the name of the book as well. Thanks!

Permalink Reply by Sabina on April 24, 2009 at 12:53pm

Hi Christine,

I have just been struggling with the same issue for my son. He has just turned 6, but his hair started falling out last November. He is completely bald ( I really dislike that word ).

When his hair first started falling out, I was ready to go to the school. I wanted to talk to his classmates, the principal, the nurse etc. I wanted to educate everybody, which is a good thing, but I also knew that I didn't want to further damage my son's self esteem. I am finding that he and his friends are more adaptable than the adults around him. There is the initial curiousity at first of course, but after that, its his personality that is noticed.
My goal is not to transfer my fears to him, and to be open about his condition and not hide. I also try to be upbeat for him and friends, exclaiming how lucky is, no more haircuts, tangles, plus how cool he looks, like a wrestler or a football player.
My son, Marcus, doesn't like to talk about feelings ( such a boy), so I am hoping we are on the right path. I really feel for you, as we want to do the best for our children and protect their innocence.

I hope this helps somewhat, the way I am coping is by following my son's lead.

Sabina

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