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Alopecia & our kids - Success stories from parents
Do you have a young son or daughter dealing with Alopecia and are experiencing the anxiety of worrying about how they handle it socially today and what it will be like for them in their teen years? If so, I wanted to share my story about my son (who was born with alopecia) with you....hopefully you will find this comforting.
Over the years, I always looked for positive feedback and information; I desperately needed reassurance that things were going to be OK for him as he went thru the various stages of his life. I am hoping that I can give you that reassurance with this posting.
Anything I could read or hear, that would help me to put my fears to rest, is what I grasped for. Fears such as...."What if he has no friends and is looked at as an outcast?". As we know kids can be very cruel, "What if the comments are so cruel that he isolates himself from everyone?", the worse one...."What if as a teenager he becomes so depressed that he takes his depression to the worst level imaginable". You get the picture, I am sure.
I worried ALL the time...it is what we do as mothers. ;-) Friends and family would tell me that I worried needlessly but to me my fears were real and the anxiety of it kept me up at night. If my story helps one parent from having the extreme anxiety that I had, then it is worth my time and effort in sharing my story.
My son was born with alopecia, completely bald, he is now a freshman in high school and still completely bald (he does have eyebrows and eyelashes). Over the years he would periodically make comments such as "Why me", "I hate it that I don’t have hair". He didn’t do it very often and the fact that he didn’t led me to worry that he was keeping it all inside. So what did I do??….I worried even MORE. He seemed happy most of the time, despite these comments, but I still worried.
I remember dropping him off for his first day of pre-school and the teacher telling him that he had to take off his hat as he walked into the class. I wanted to lash out at her and say…. “We need to make an exception for my son, he needs to keep his hat on!” but I refrained myself. She was aware of his situation and years later I realized that her goal was to make him feel “normal” since the other kids were not wearing hats.
Looking back on this I understand that this was actually a very good thing that she did this, sheltering him from learning to deal with his difference was not the right thing for me to do and that is exactly what I would have done during his younger years if I could have.
He is now 15 and is a very happy, outgoing individual. He has been playing baseball since he was 5 yrs old and this has become a real passion for him, giving him confidence....(which was very convenient when he was younger since this meant wearing a hat all the time, just like everyone else). He has also played basketball, soccer and football, also giving him confidence. In addition, he has been heavily involved in school activities such as band, chorus and other groups over the years.
My point in mentioning his involvement in sports and school activities is because I truly believe that these are the things that helped him not only build his confidence but also made him feel accepted by all kinds of kids and people in general. Now as a teenager, he has learned to have fun with his situation, wearing silly T-Shirts that make lighthearted humor about his alopecia….such as one that says… “Who needs hair with a body like this?”
Today he often will not wear a hat because he is proud of how he looks and takes pride in actually appearing “different”. If someone would have told me this would be the case 10 years ago I would not have believed it! I truly feel like my prayers have been answered.
My advice, to those of you that are confronted with this situation with your child, is to find something that they have a real passion for, making them feel good about themselves. In our case baseball really did it for our son. I believe, based on our experience, it is extremely beneficial to keep your child involved in as many activities as possible, as we all know, getting out in the world makes all of us stronger individuals.
We didn’t know how to handle the situation and often wondered if we did and said the right things. Reading as much as possible about Alopecia and attending a couple of support group meetings helped us out tremendously. My son never had an interest in attending the meetings so I did it on my own.
In elementary school I sent a letter to the school in order to inform the staff of the fact that he is a healthy child, that he just has alopecia. (This was suggested by the Alopecia Foundation). I do believe that this was beneficial so others did not wonder if he was dealing with a serious illness. This spread the word to our community and if kids had questions their parents would have answers.
We had a couple of instances in which he was teased about his lack of hair, the hardest years were between 3rd and 6th grade, but as he got older he learned to accept his condition and make light of it. He has gone to the same school district since kindergarten so his classmates became very acceptable of the fact that he does not have hair.
I realize that everyone’s situation with alopecia varies, based on environment and social settings. However, please know that if you have a child that is dealing with alopecia that it does get easier as time goes on. I am not an expert by any means but I believe with all of my heart that getting your kids involved in as much as possible will lead to them becoming very comfortable with their unique situation.
This is what has worked for my son and continues to work. He still has situations, especially when first meeting new people, in which he is hesitant in letting it be known that he does not hair but this is short lived and within no time at all he is sporting his shiny head proudly.
My heart and prayers go out to all of you that are dealing with a child that has alopecia, I truly understand your struggles. As parents we just want our kids to be happy and others can not understand the anxiety that having a child with alopecia may cause, unless they are dealing with it themselves.
I know that we still will have some bumps in the road with our son but with each passing year he is getting more and more confident and acceptable of his condition and I am sure your child will do the same! So close your eyes and go to sleep without the worries of alopecia on your mind!
I wish the best for all of my “alopecia family” thru-out the world. I am sure many of you have similar stories, so I thought it would be great to start a blog where we can all share uplifting insite on how we as parents and our children deal with living and growing with Alopecia.
Replies to This Discussion
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Permalink Reply by jackie on
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Thank you....hugs from Illinois! Your story means so much to us :) We are new in this journey, just 2 years. Our daughter is now in 6th grade, the school year has started off shaky. A girl is trying to pull her wig off in school and teasing her.....as a mother I want to fast forward these years, but we keep encouraging and growing her coinfidence. Sports has been another coinfidence builder too. From the bottom of our hearts I thank you for sharing your story--keep inspiring!
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Permalink Reply by amym on
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Jackie- depending on where you are at in Illinois, we have started an alopecia support group in Crystal Lake, IL. You and/or your daughter are very welcome to come. Next meeting is on Nov. 19th from 7-9. If you look under the support group posts you will see all the information. There are a couple teens that have come to our first 2 meetings. Sometimes just being around others with the same issues helps.
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Hello--thanks for reaching out. We would love to come-I am having a hard time find the info :) Thanks again---we live in St Charles, not too far from you
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Great- I also know there is a St. Charles group, but not sure when or how often they meet. Everyone decided from my group that they would like monthly meetings, so that is what we are doing. Just had our second meeting ever this week, so it is a small group right now, but has been really beneficial. I have an e-mail address set up for the group of alopeciaareatacrystallakeil@gmail.com feel free to contact me through that whenever you need something.
If you want to check the NAAF support group calendar you might be able to find out if or when St. Charles group is meeting. I believe they recently had their leader move, so not sure if they've started up again or not. If I get a chance I will check the calendar and/or e-mail my NAAF contact to find out for you, and will post it here.
But, we would love to have you at our meeting! As I stated we've had a couple of teenagers come in with their folks.
Next meeting as I said for us is Nov. 19th from 7-9 pm location is:
Crosspoint Lutheran Church
8505 Redtail Dr.
Lakewood, IL
60014You can e-mail me at the e-mail I gave you if you have further questions.
Thanks
Amy
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I did just found out the St. Charles contact is only phone support. We'd be happy to have you at our meeting, though. Just e-mail me to RSVP if you could when you know so I can be sure to have enough chairs set up.
Thanks
Amy
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Permalink Reply by Ohio on
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Jackie....my heart goes out to you and your daughter. Kids can be very cruel, my son went thru this (kids taking his baseball hat) however by the time he was in 7th-8th grade it seemed like the kids became more accepting of his condition and now that he is in high school they are starting to mature and the coments are much less seldom. I always told my son to not bully back but kill them with kindness...not sure that it always worked out that way though. ;-) It is tough, we just want our kids to be social, happy and have confidence. Having alopecia I do believe brings strength to our children, I have seen some positivies come from it as far as creating character but it is a challanging road to travel. I with you and your beautiful daughter the best of luck Jackie!
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Permalink Reply by Dena on
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As a mother of a beautiful bald 7 year old, I absolutely love this post. I couldn't agree more about keeping your kids involved as much as possible. When she lost all of her hair at 6, I was a nervous wreck. She lost it all in a matter of days, the week before a dance recital. I didn't know what to expect. I knew everyone would be talking because she went from hair down to her waist, to no hair at all. She wasn't happy about the hair loss, but never indicated that she didn't want to dance. She went up on stage and I was sitting out with the audience listening to all the whispers when everyone saw her. I was sitting there fighting back the tears worried about her. Later that night when we watch the video, for the first time I realized that my daughter was just gleaming during her performance. None of it affected her and unfortunately I was so distracted that I miss out on her happiness. The whole time I was preparing myself for the worst, and missing out on a good time. I was the one worrying about what people thought. Something I have always told my kids not to do. Alopecia hasn't slowed her down a bit, if anything it has made her more competitive and active. She is a gymnast, runner, dancer, and participates in Brownies. We have tons of hats, head bands, bandanas, and wigs, but she prefers to wear nothing at all. She said one time that kids just stare trying to figure out if she has hair if she wears these things, so she would prefer to go bald so they will just ask her about her baldness. Then she can explain it is Alopecia and they don't have to wonder. She hates for anyone to think she is sick and it helps get everything out in the open. I think the fact she isn't very sensitive about it makes it hard for others to bully her. It just isn't really that big of an issue for her because she is more concerned with the things she is involved with to notice. She gets her confidence from participating in activities. I truly believe that Alopecia has given her a focus in other aspects of her life that wasn't necessarily there when she had hair. I am sure that there will be times in her life where she will be more sensitive and will struggle, but we have chosen to worry about that when the time comes.
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Great comments, Dena. I absolutely agree that if you are open and not sensitive about it that kills the whole bullying/ mean comments people make about alopecia. There will always be those few, but congratulations to you for raising a child who can be comfortable and educate others. You should be proud.
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Dena....your words brought tears to my eyes since I have traveled this same path. I can not tell you how much I can relate to these words....."Later that night when we watch the video, for the first time I realized that my daughter was just gleaming during her performance. None of it affected her and unfortunately I was so distracted that I miss out on her happiness. The whole time I was preparing myself for the worst, and missing out on a good time." I can not tell you how many events whether it be cub scouts, school events, sporting events etc. in which I have sat there with exactly the same thoughts and fears. In the end my son was happy and not impacted by the lack of hair at all....it was all my emotions involved, not his. I just recently, within the last 2 years, reached the point to where I can watch my son and not only not think about the fact that he is bald and wondering if he will be OK and fit in but also proudly point out to other parents that may ask "which one is your child?" that "he is the tall bald one"! My son jokes about how he can run into people, that he has not seen for a long time, from piror clubs and sports teams and that everyone recogonizes him....it makes him feel like a bit of a celeberty...lol. Your daughter sounds like a wonderful child and she is blessed to have such a loving supportive mother, I am sure she will do great during the various ages and stages of dealing with Alopecia. I wish you the very best and I am so glad that my post helped, it is a tough road for parents and nothing helps me more then to know that we are not on this journey alone. :-)
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Thank you so much for sharing this story. It really does give me hope. My 8 year old daughter Ava was diagnosed in July 2012. I've stayed awake many nights worrying about the effects of alopecia on her. We've cried together but I've done alot of crying on my own over the last year and a half. She went from waste length hair to little wisps on her head in a matter of months. It has grown back and fallen out again and she recently lost much of her eyebrows. Right now she has very patchy areas of hair. Last school year she wore headbands and scarves. We did the same in informing the school and the parents last year. We showed the class the DVD from NAAF and that really helped all the children understand what was happening. All her neighborhood friends have been great. She is actually comfortable without anything on her head around them. She asked for a wig this summer when we decided to stop all the shots and treatments. We were able to get her a hair system at no cost from a wonderful organization run by the Hairclub For Men called Hairclub for Kids. If your child is in need of hair I highly recommend them. They have been absolutely wonderful to us. She now wears her wig to school everyday and since she came back with it after summer vacation not too many kids have noticed. Only a few of her close friends know it's not her own. My focus has always been to give her confidence and love. We went camping this past summer and she was going to the pool without her swim cap, I asked her if she wanted it and she said "No, I'm free to be me Mom!" Then we were having lunch together the other day and I asked her how she was really feeling about things and she was just so incredible. She said that she gets down about it sometimes but she is thankful that she's not sick or in any pain like some other diseases cause. She is my hero... But I do worry so much about the coming pre-teen and teen years. My husband and I and her big brother will continue to focus on building her confidence and hoping and praying for her to be happy and have a healthy life. I haven't heard of any support groups in Northern NJ so if anyone has any info please share. Blessing to all of you and your families!
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I am so glad Illy that my story has helped you. I think we don't give our kids enough credit for the strength that they have. My son has always been strong and has dealt with it well however it is normal for us, as parents, to worry about their happiness. I just recently read a school jouranl of my sons, from 3rd grade, in which he wrote "My mom asks me if I am happy all the time, I dont know why she worries, I am happy". It brought tears to my eyes. I am glad to hear that your daughter has the support of neighborhood friends that is so important. My sons friends have said if my son grew hair it "would be weird"...lol....they dont know him to look any other way since he was born with alopecia. I love it that your daughter said "I'm free to be me Mom". Coming from a mother that has been down this road I know how great those type of statements can make you feel. I wish you the very best of luck, your daughter will do great I am sure!
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Aimee .....Thank you, I am very proud of my son and the young man that he has become. I completly agree that children dealing with alopecia should have the option to wear a hat or another form of head piece if they chose to do so. If my son would have insisted at anytime that he wanted to always keep a hat on during school, I would have fought tooth and nail to make it OK for him to do so! ;-) I honestly am not sure what his school policy is on this topic since it was never an issue for us. I have heard a couple of terrible stories in the media over the years, in which schools have prohibted it and that just breaks my heart. Every child handles alopecia differently and their wishes should be granted, we need to be sure that these children are confident and comfortable in their daily environments.
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