Alopecia World
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My son quit high school because of alopecia..I'm so angry!
Tell me if you think I'm out of line. And If I am out of line, If I've taken this too seriously.. I'll back off. The local paper has agreed to do a story on it, but Jon is so embarassed by it, he is so embarrassed of his alopecia, that I told Don Esmonde of the Buffalo News that we can't do the story, and I can't blame Jon.. he quit school because of this.
Jon had a previous brush with alopecia. He lost most of his hair when he was 12. Everything started to grow back. My hushand's brother has alopecia universalis. And apparently, this is a family trait. Jon has lost all his hair with no re-growth. Tony lost his hair in his 30's. Jon lost his hair, all of it, at 15. We begged the principal to allow him to wear a bandana, as this is what he is comfortable with, and she re-buffed us...said if Jon wore a bandana to cover his alopecia, it would mean there were gangs in the school.
Here is the letter I sent them. If you have a moment, write a letter to the West Seneca Central School District , most notably Angela Lapaglia, principal at West Seneca East High School, and let them know what you think.
You can contact me, Sharon, mom of Jon, at sharonandstan05@yahoo.com. Here is the letter I sent to the addressees and the school board...with no response.
September 22, 2008
12 John Brian Lane
Cheektowaga, NY 14227
Mr. Brandon Wiley, Assistant Superintendent
West Seneca Central School District
1397 Orchard Park Road
West Seneca, NY 14224
Mrs. Angela Lapaglia, Principal
West Seneca East Senior High School
4760 Seneca Street
West Seneca, NY 14224
Officer Marano
West Seneca Police Department
1250 Union Road
West Seneca, NY 14224
Sirs and Madam:
I am writing to state my absolute disgust with regard to the manner in which incidents regarding my son were handled. Mr. Brandon Wiley, Mrs. Angela Lapaglia and Officer Marano of the West Seneca Police Department all took participating roles in my son’s situation.
To review our situation, my 16-year-old son Jonathan suffers from Alopecia. This is an auto-immune disease in which the body mistakenly attacks hair follicles, causing hair to fall out and ceasing to grow. There are variations of the disease. Alopecia Areata results in bald patches on the head. Alopecia Totalis results in no hair on the victim’s head. Alopecia Universalis results in the victim losing all hair on the body, specifically losing hair on the scalp, eyebrows, eye lashes, nose hair, everywhere. My son suffers from Alopecia Universalis. He has no hair anywhere on his body. As suggested by the medical staff at The Cleveland Clinic, we, as his parents, have taken every precaution to prevent any ill effects of the disease as our son has no eye lashes, which protect the eyes, or nose hair, to protect his respiratory system. We have instructed him to always cover his head.
Being a 16-year-old young man and having no hair brings about other ramifications. It is certainly difficult just to be a teen-ager, maybe more difficult during the times within which we live. Jon has carried on in a commendable fashion. He maintains a circle of friends. He just recently started his first job. He is learning to drive.
With regard to being bald, he has developed a “security blanket” through a kerchief he wears on his head, similar to what a patient undergoing chemotherapy might wear. We are supportive of Jon wearing this kerchief. Anything that brings the boy comfort, at this point, is okay with us.
The problem we have lies solely with the West Seneca Central School District and Officer Marano of the West Seneca Police Department. I have read district policy regarding appropriate attire. It calls for nothing to be worn on the head. I respect rules and regulations, but in my 46 years, I have found that there is an exception to every rule.
It was suggested by Mr. Wiley, Mrs. Lapaglia and Officer Marano that my son wear a baseball hat to school. For his own reasons, this is not acceptable to him. He has stated that his peers can still see that he is bald. And while surely everyone knows he has no hair, his only sense of security is with the kerchief on his head.
I called the district office at the end of July, knowing of Jon’s problem and his apprehensions. Mr. Wiley seemed receptive of my concerns and, after our conversation, I felt confident Jon could attend school covering his head in a way with which he felt comfortable. I was told I would receive a call back. That call never came. The week before school started, I left Mr. Wiley a voice mail stating I was still waiting for the promised call. He did then call back, only to inform me that my son’s way of dealing with his affliction was not acceptable.
Jon started school, and even though we told him the kerchief was not allowed, he wore it anyway. I cannot stress how self-conscious he is with regard to his affliction. On one particular instance, a call was made to my place of employment stating Jon could not stay in school because of the kerchief and I needed to go to school to get him. Thankfully, I work for a very understanding group of doctors and was able to have a conversation with the assistant principal. I currently cannot operate a motor vehicle due to health concerns of my own. His suggestion was that, since I could not come to get Jon, that he spend the day in the office. I suggested it would be in Jon’s best interest to remain in class. Why would you punish the CHILD in a situation like this? After I stated that, it was decided Jon would stay in class and a meeting was arranged between administration and my husband and myself.
My husband and I met with Mr. Wiley and Mrs. Lapaglia on the following Tuesday. Even though we stressed my son’s mental state and explained his affliction, we were rebuffed. The message we were given was that if Jon wore his kerchief, it appeared he was in “a gang”. Mr. Wiley presented a poster that Officer Marano provided suggesting that if my son continued to wear a kerchief to hide his Alopecia, someone might think he was in a gang. What was said to us was that if someone came into the school and saw my son, it would be perceived that there were gangs in the school or that my son is in a gang.
MY SON IS NOT IN A GANG. MY SON HAS ALOPECIA, A MEDICAL CONDITION!
I am the proud parent of four children, Jon being the youngest. As a parent, I have told my children on many occasions that it does not matter what other people think, rather it is more important that they do what is right. The message I got from the West Seneca School District and Officer Marano of the West Seneca Police Department is exactly the opposite, that it is more appropriate to cower to other people’s thoughts and beliefs, rather than do the right or compassionate thing.
My son Jonathan, at the age of 16, quit school on Monday, September 15, 2008. I will forever hold Brandon Wiley, Angela Lapaglia and Officer Marano of the West Seneca Police Department responsible. I lie awake at night worrying about my son. I hope that they, too, on sleepless nights, realize what they could have done for this boy and remember, instead, what they chose to do.
Very truly yours,
Sharon Lesakowski
Jon had a previous brush with alopecia. He lost most of his hair when he was 12. Everything started to grow back. My hushand's brother has alopecia universalis. And apparently, this is a family trait. Jon has lost all his hair with no re-growth. Tony lost his hair in his 30's. Jon lost his hair, all of it, at 15. We begged the principal to allow him to wear a bandana, as this is what he is comfortable with, and she re-buffed us...said if Jon wore a bandana to cover his alopecia, it would mean there were gangs in the school.
Here is the letter I sent them. If you have a moment, write a letter to the West Seneca Central School District , most notably Angela Lapaglia, principal at West Seneca East High School, and let them know what you think.
You can contact me, Sharon, mom of Jon, at sharonandstan05@yahoo.com. Here is the letter I sent to the addressees and the school board...with no response.
September 22, 2008
12 John Brian Lane
Cheektowaga, NY 14227
Mr. Brandon Wiley, Assistant Superintendent
West Seneca Central School District
1397 Orchard Park Road
West Seneca, NY 14224
Mrs. Angela Lapaglia, Principal
West Seneca East Senior High School
4760 Seneca Street
West Seneca, NY 14224
Officer Marano
West Seneca Police Department
1250 Union Road
West Seneca, NY 14224
Sirs and Madam:
I am writing to state my absolute disgust with regard to the manner in which incidents regarding my son were handled. Mr. Brandon Wiley, Mrs. Angela Lapaglia and Officer Marano of the West Seneca Police Department all took participating roles in my son’s situation.
To review our situation, my 16-year-old son Jonathan suffers from Alopecia. This is an auto-immune disease in which the body mistakenly attacks hair follicles, causing hair to fall out and ceasing to grow. There are variations of the disease. Alopecia Areata results in bald patches on the head. Alopecia Totalis results in no hair on the victim’s head. Alopecia Universalis results in the victim losing all hair on the body, specifically losing hair on the scalp, eyebrows, eye lashes, nose hair, everywhere. My son suffers from Alopecia Universalis. He has no hair anywhere on his body. As suggested by the medical staff at The Cleveland Clinic, we, as his parents, have taken every precaution to prevent any ill effects of the disease as our son has no eye lashes, which protect the eyes, or nose hair, to protect his respiratory system. We have instructed him to always cover his head.
Being a 16-year-old young man and having no hair brings about other ramifications. It is certainly difficult just to be a teen-ager, maybe more difficult during the times within which we live. Jon has carried on in a commendable fashion. He maintains a circle of friends. He just recently started his first job. He is learning to drive.
With regard to being bald, he has developed a “security blanket” through a kerchief he wears on his head, similar to what a patient undergoing chemotherapy might wear. We are supportive of Jon wearing this kerchief. Anything that brings the boy comfort, at this point, is okay with us.
The problem we have lies solely with the West Seneca Central School District and Officer Marano of the West Seneca Police Department. I have read district policy regarding appropriate attire. It calls for nothing to be worn on the head. I respect rules and regulations, but in my 46 years, I have found that there is an exception to every rule.
It was suggested by Mr. Wiley, Mrs. Lapaglia and Officer Marano that my son wear a baseball hat to school. For his own reasons, this is not acceptable to him. He has stated that his peers can still see that he is bald. And while surely everyone knows he has no hair, his only sense of security is with the kerchief on his head.
I called the district office at the end of July, knowing of Jon’s problem and his apprehensions. Mr. Wiley seemed receptive of my concerns and, after our conversation, I felt confident Jon could attend school covering his head in a way with which he felt comfortable. I was told I would receive a call back. That call never came. The week before school started, I left Mr. Wiley a voice mail stating I was still waiting for the promised call. He did then call back, only to inform me that my son’s way of dealing with his affliction was not acceptable.
Jon started school, and even though we told him the kerchief was not allowed, he wore it anyway. I cannot stress how self-conscious he is with regard to his affliction. On one particular instance, a call was made to my place of employment stating Jon could not stay in school because of the kerchief and I needed to go to school to get him. Thankfully, I work for a very understanding group of doctors and was able to have a conversation with the assistant principal. I currently cannot operate a motor vehicle due to health concerns of my own. His suggestion was that, since I could not come to get Jon, that he spend the day in the office. I suggested it would be in Jon’s best interest to remain in class. Why would you punish the CHILD in a situation like this? After I stated that, it was decided Jon would stay in class and a meeting was arranged between administration and my husband and myself.
My husband and I met with Mr. Wiley and Mrs. Lapaglia on the following Tuesday. Even though we stressed my son’s mental state and explained his affliction, we were rebuffed. The message we were given was that if Jon wore his kerchief, it appeared he was in “a gang”. Mr. Wiley presented a poster that Officer Marano provided suggesting that if my son continued to wear a kerchief to hide his Alopecia, someone might think he was in a gang. What was said to us was that if someone came into the school and saw my son, it would be perceived that there were gangs in the school or that my son is in a gang.
MY SON IS NOT IN A GANG. MY SON HAS ALOPECIA, A MEDICAL CONDITION!
I am the proud parent of four children, Jon being the youngest. As a parent, I have told my children on many occasions that it does not matter what other people think, rather it is more important that they do what is right. The message I got from the West Seneca School District and Officer Marano of the West Seneca Police Department is exactly the opposite, that it is more appropriate to cower to other people’s thoughts and beliefs, rather than do the right or compassionate thing.
My son Jonathan, at the age of 16, quit school on Monday, September 15, 2008. I will forever hold Brandon Wiley, Angela Lapaglia and Officer Marano of the West Seneca Police Department responsible. I lie awake at night worrying about my son. I hope that they, too, on sleepless nights, realize what they could have done for this boy and remember, instead, what they chose to do.
Very truly yours,
Sharon Lesakowski
Replies to This Discussion
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Permalink Reply by Bob Hershberger on
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I also had Alopecia in High School..Needless to say,it was diffulcult..My Dad said Im going,sooooo,I had to go..I was tortered at every turn..This was in 1970,and I had never heard of another person having AA..I'll pray for your son..Im sure he needs it..Bob
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Permalink Reply by Jason "Shanks" on
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Sharon,
I am a 32 year old AU sufferer as well and I just want to let Jon know that he is not alone and that there are many of out there just like him that have to deal with this every day. I know it is hard but no matter where you go in life or what you do there are always going to be people that stare or want to know why you have no hair. But quitting school is not the answer. An education is everything these days and without it he will have to struggle even more through life. It is easy for me to preach now that I am done with high school but you just have to go through with it and deal with the intollerable people. You say he has a circle of friends as did I which is who he needs to rally behind. Those are true friends who like him for who he is not for what he looks like and the other ones he would obviously not be friends with anyways. Just let him know from me, a fellow AU sufferer who went through the same crap....it isn't worth ruining your life over stupid comments from immature kids. High school is 4 years of your life, after that is the rest of your life. Don't throw that away! Someday you will be their boss because dealing with this affliction made you a stronger person than they can ever hope to be.
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Permalink Reply by sr on
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I'm sorry to hear of you and your son's experience. I hope it all works out ok for him.
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I'm so sorry for you and your son. It seems to me that, on a practical level, the school should have to accomodate your son because of the laws requiring them to accomodate children with special needs. There have been legal cases fought and won that are based on the Disablities Act which prohibits discrimation. I'm not a lawyer but it seems to me your son's right are being violated. I found this site:
http://www.disabilityinfo.gov/digov-public/public/FindSL.do?search=...
it had a link to this one:
http://www.advocatesforchildren.org/
I don't know if they will help... but for every jerk, there is also someone who truly cares.
I think it's horrible that "policies" have replaced people and compassion... But don't give up. Not everyone will hide behind policies.
I don't have alopecia. I have a friend that does... but I joined this site because I found the people here inspirational.
I shaved my head a few years ago... just because I wanted to... and there was an amazing feeling of being "naked", "exposed"... and it was both exhilarating and raw; like a wound that one wanted to cover but couldn't... The people here are coming to terms with their own beauty... often letting an inner beauty shine through the journey. I don't know if that is the gift of Alopecia... if there is one. But I do think that is the gift we all are offered, in one way or another... because self acceptance is a universal challenge. Obviously, more so with Alopecia because I don't imagine you get much rest from the issue.
I don't think you can hide when you have alopecia... and so often hiding is comfortable... and comforting. It is natural to seek to blend in... it can even be a part of belonging. Just not sticking out...
Still...
I have yet so see a photo posted here that I don't find absolutely beautiful. Stunning. I am often so humbled, looking at the photos.
I'm sure your son is beautiful... without his kerchief... but no one has the right to force him to be exposed and naked to the world at a time that so often one is already feeling raw... and not knowing why... But when he's ready, I'm sure he will inspire others because of who he is... not in spite of Alopecia.
Blessing to your family...
~Cecelia~
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Permalink Reply by Suzanne Thompson on
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Beautifully written letter. I am with Cecelia. Find an advocacy group, or even the ACLU to take on this situation and sue the (excuse my language) SH.T out of the school district. He has every right to attend school , free of harassment, ESPECIALLY from the administration. Some group will probably take the case for free. You GO, MAMA!! Best of luck to you and your boy. He needs to know that in this situation, HE is the one who is acting reasonably, and the others are merely showing their ignorance. WTF should the administration care if "someone should walk in and think there are gangs in their school"?? They should be backing up Jon, not stigmatizing him. OOH this kind of thing makes me SO angry. Please keep us informed as to developments with this. I hope he has found support in his friends, and consider going to an alopecia support group with him, if there is one in your area. It may help him with acceptance.
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Permalink Reply by Teresa on
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Before joining this site, I had no idea such things could happen. I have just recently got alopecia, but I am a grown up woman. And I have a son too, so I can imagine what could live a young boy with this problem, when his "self" is still developing. I understand that in some places there may be policies etc.. but above all there are human rights, and one of the most important human right for children is the right to have an education, as well as get food and clothes and love.
Hold on!
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Permalink Reply by BaldGirlsDoLunch.org on
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Keep the dialogue open with these folks and stress the need to seek to put Jon's needs first and keep working on finding acceptable solutions together. Stress collaboration and don't blame. It won't help. ( even if you don't feel that way, fake it)
"Let's figure out how Jon gets his education".
"I urge the school and the PD to do more to counter-act gang perceptions if it's such a pressing concern. One bandana is not the issue."
If the school is concerned about the perception of gangs, encourage them to start up some community outreach that clarifies their stance in a general way and not by inappropriately hanging the perception issue on one child. They may be very sensitive about this issue, but you can remind them that most people visiting a school in most places do not see one bandana and jump to the gang conclusion. They are hypersensitive for some reason. It could be that Jon's bandana has just coincidentally coincided with flak they've been getting lately. Try to see if they are pointing at him due to criticisms they are getting from another direction. Once they are willing to admit/talk openly about why they are so hypersensitive, their narrow thinking and knee-jerk reaction to Jon's situation should start to resolve. Right now they've got to defend their tough stance for some reason.
They are more concerned about public perception than the well being of a particular child...you can point out how their actions appear without being accusatory....and urge them to fix their public problem and not exacerbate a sensitive, teenage issue.
Of course, as educators, they should all know better. But that's just not how it is in many places.
Take the high road in negotiating a way to solve it together.
thea
No need to inflame the situation by going to the papers.
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I should of mentioned that I also wore a beenie hat,that wasnt allowed at all,but they ""knew"" about it and let it slide..This was at a strict catholic school..You can e-mail me if youd like any feedback..Id be glad to help..Bobn
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Permalink Reply by Sharon on
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Sharon my heart goes out to your son and your family........this situation is just so wrong, I really hope that you can get some support so that there is the best outcome possible for Jon. Take care and I am thinking of you........this is every parents worse nightmare........high school is hard enough without this stuff going on.
Sharon
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Permalink Reply by Mary on
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Sharon, my heart goes out to you and your son. I agree completely that you should contact the ACLU. You are NOT out of line, and you are not doing anything wrong.
Please keep in touch with us and let your friends at Alopecia World know how you and Jon are doing.
Mary
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Permalink Reply by Amy on
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I am so sorry that this is happening!
My AA didn't manifest until I was in my early 20's & it was devastating enough! I cannot imagine dealing with this at 16! Kids aren't the kindest, unfortunately & when you add uneducated adults to the mix, it's not a good thing.
I commend you for your love & support of your son!
I agree with the others on contacting the ACLU. I hope that something can be done & that your son can go back to school.
Best wishes!
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I will never forget losing my hair at high school .Im not sure about other countries but here in new zealand, we have canteen bandana week which raises money for youth cancer. Its widely regonise and many famous celebs endorse the week. While i have had my episodes of alopecia I wished that alopecians had there own bandana. So I could stand up and say yes, I am different on the outside but the same on the inside. Kids get cancer,burns,and allsorts of disfiguring things happening to them.Teenage years are the most important confidence building time of any humans life. May this, in time empower your son to stand up and make changes and fight for the right to maintain self esteem. After all are we alopecians a CULTURE.................... and.....They are being culturly insensitive. Don't give up! He's not alone. What you sow, so you will reap my mother used to say. These reply don't alway's help your cause. Though I hope that something big stems from someone reading your story and letter that takes your worries away. God Bless
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