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How do I help my child who is being bullied at school because of her alopecia?
Just last year my daughter, who is in elementary school, lost all of her hair. She's had alopecia areata for a few years but we always managed to cover her bald spots. All of a sudden all of her hair was coming out. It turned into alopecia universalis. At first she wore hats to school, then we got her a wig. Kids immediately made fun of her for not having hair and then for wearing the wig. When school got out for the summer she was so relieved. She had a great low stress summer but just started school again. This is only her second week of school and to date there have been three different incidents of kids making very mean comments about her wig and also about her lack of eyebrows and eyelashes. The school has been very good about helping as far as letting the kids know it's wrong to bully but I'm feeling so hopeless. It kills me to see her going through this and I really don't know what I can do to help her. I'm pretty sure she's going to need counseling but other than that what more can I do to help her get through all of this? I don't want to put her in homeschool and withdraw her from social interaction because I don't want her to be ashamed or feel like there is anything wrong with her. However, at the same time I don't know how much more I can take of watching her be sad because another person put her down. Any suggestions or anyone who's been through this I'd really appreciate some ideas! Thanks
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Comment by SabineTawni on September 3, 2016 at 6:21pm
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You bet it is difficult to deal with, CoachJudith, even as an adult! I am 68 with AU and still have days where I am in shock over what has happened to me. I had the thickest, healthiest hair in the world. Hairdressers used to shutter when I walked into their salon as I was a full-day's work. Three years ago, I went totally bald after 40 years of very occasional (ever 4 years or so) of have one bald spot. I never had any treatment because the spot started to fill in after 3 months or so.
Who knows what went wrong. But my heart aches for young children and even younger adults than me who have this condition.
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Comment by CoachJudith on September 4, 2016 at 3:59am
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Hi Sabine,
Boy, do I know that one! My hair was so thick a brush would break off in it. It was about 4 or 5 years ago for me as well. My hair was always my crowing glory. My hair started shedding, and I kept telling myself, "Don't be silly, everyone sheds hair. It was when it started coming out by the handful that really caught my attention. After going to several doctors, expensive treatments, etc. I ended up with an integrated hair system. It isn't a cure all, but it works for me. My only problem is I moved to a warmer climate and this summer I have been roasting. I am seriously thinking of having it removed, shaving off the hair that is left and buying a good wig! At least I can take a wig off.
I coach a lot of people who suffer from hair loss. What I find interesting it is the young ones that seem to handle it better. I know kids you have NEVER had any hair ever. I have come to the conclusion, my hair is just another accessory.
If I can be of any support, you will find my details on my profile.
Kind Regards,
CoachJudith
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Hi. I'm crying right now. I just stumbled on to this group chat and I'm so much in my feelings right now. My daughter just turned 12 on May 25th 2016. On that Same night I went to do her hair for school/her birthday and all of a sudden we noticed several bald spots. We weren't sure what was going on. I immediately took her to the ER because her doctors office was closed. They told me it's not an Emergency and confirmed it wasn't ring worms. They weren't sure about anything else. That much I was comforted with so I went to the hair store to get Wild Grow to put in spots and then just had a weave put in hoping it would just grow back. About a week later the weave was loose and more of her hair was just coming out!????? Then even more. At this point I went to a differ emergency fast tract clinic. They said it might be her thyroid and to have her primary Doctor do some blood work. Ok. Did that. It took about 2 weeks more waiting for blood results. By then those last 2 weeks school was still in session so I had a temporary wig made for her. She felt confident going to school because wigs are commonly worn by her older 21 year old sister and even myself at times just for style. I will never forget My daughters face when she got off that school bus. She stepped down as if a model on a runway with heels, Her expression was strong and fearcefull, full of strength in her walk and demenior, Smiling with grace and virtue. But as walked closer toward me her eyes welled up, her back began to crouch as she heard the school bus pull off... By then she collapsed in my arms sobbing. She had been the subject of ridicule and laughter, multiple kids pointed out her wig throughout the day, asking her if that's a wig, laughing and joking behind her head as if she wasn't even standing there at ears length, chanting songs that she's wearing a wig and one boy even went to try and lift her bang up to see. Mind you these details she at first didn't want to tell me. I learned only until later that evening. After I had held her for almost two hours in my arms when she first got home, repeatedly asking but already knowing what was wrong. She didn't want to go back to school but did. It was only 9 days left till the end of that school year.
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Comment by Tallgirl on September 5, 2016 at 1:52pm
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Contact the National Alopecia Areata Foundation at www.NAAF.org for videos and pamphlets for your family and the school. Have the school nurse, principal, teachers, counselors, school board and parent group see the video and make a solid plan how to insure a safe environment for your child.
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Comment by Louise m on September 6, 2016 at 2:44pm
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I've had alopecia universalis since a baby , the best thing you can do is be there for her kids a cruel, once you keep reminding her how beautiful she is and always let her no no one is perfect God made us the way we are for a reason , trust me she will grow into a strong independent woman with ur help , hair doesn't define who we are , my 3 kids look at everyone the same because I let them no not one person is perfect it's what's inside that counts, all my love from Dublin
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Comment by Lana on September 12, 2016 at 5:52pm
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Don't panic! Little kids can be TERRIBLE. I wore the same hat from kindergarten until 4th grade...the same one guys. Let's just say I didn't always have the best ideas and that fact didn't escape my classmates. I wore a wig from 4th-7th grade and then again my junior and senior year of college. The thing that helped most from me was meeting other kids with alopecia at the national alopecia areata foundation's summer conference and becoming pen pals with other kids my age around the country. Check out www.naaf.org and see if there's a support group around your area. If you haven't met anyone with a child around your daughter's age here I'm sure one of their contacts can help!
IT. GETS. BETTER.
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Yes it does! Having support of others who have Alopecia is so empowering for these little ones. They suddenly realise they aren't the only ones and have somebody to share their hair loss journey with. Brilliant comment!
Coach Judith
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Comment by Ella Bourchier on September 11, 2019 at 7:32am
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Teenage students are often cruel to each other. Alopecia is an external problem and adolescents pay attention to it. Society is now significantly degrading. It reminds me of an essay on George Ourwell's 1984. You can read this book on my website. I recommend that every student read this book to see the consequences of their actions. Everyone has the right to look as he wants.
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