Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Fitzy on
-
This is disgusting behavior on the schools part! I am going to write a letter, all the way from NZ! Gangs have colours, such as red and blue, did they not consider he could wear a non gang associated colour?
-
Permalink Reply by Gill on
-
My heart goes out to you, as a monther and a sufferer of AU also...............BUT I am even more concerned for Jon, he must be the first consideration, he is the one that has to deal with this day to day, and his feelings have got to be paramount.
I understand as a mother, you feel so angry with the situation, and so would I, but Jon is old enough to make his own desision, and you must support him whatever it is.
I also would want to ripe the schools heads of also. If he was a Sikh, would they let him wear a turban?
Good luck
-
Permalink Reply by Joshua on
-
Hello Sharon,
I am very sorry to hear about your son's situation. I personally started AU at the age of 16 and bald spots were visible even I kept long hair to cover it at the age of 17. Yes, at the time of me senior year at highschool. It is tough, and I wouldnt been seen in the public without a baseball cap on, eventhough I am pretty sure that most around me knows that I am bald.
At the time when my bald spots were so visible that I started wearing my baseball cap to school. The attention from the school authority became clear when a public annoucement during school assembly (Mind you, the school has about 1,100) when the principal critically annouced that the school forbids anyone to wear a baseball cap during schooling hours. The shame, embarressment were beyond any imagination, eventhough I have a medical letter from the dermatologist, that wouldnt do the school authorities well enough to understand my situation. My family werent very supportive when I started losing my hair, I dont blame them really but of course it was a very very very hard time for me.
I did not quit school, as because I had only a couple of months left at the place. I took in the stares, laugh and names from my schoolmates, I became a loner at that point and picked up some very bad habits along the way as I did not know how to cope with the situation. However, quitting school was not an option in my mind.
I continued on to university. As the attire rules is more relaxed, I was able to wear my baseball cap to attend classes except for a few rare formal occassions. As in uni, things were better as I do not receive much nonsense name calling and jeering, as I suppose my experience at highschool level was much more excruciating.
I joined an Alopecia Support group, online. My life started to change as I engaged actively more into the online support group. My self-esteem and cofindence built up throughout the years. After about a year, I shaved the remaining hair on my scalp every other day and is comfortable enough of not wearing anything to cover my alopecia when I dont neccessarily need to.
I can go on forever into talking about these as your son's Jon condition reminds me of my pain in the past.
As I am not from the US, I have not much input on as how to deal with the school authority and state/ district law but it does not mean that I support the School Authority's decision of NOT ALLOWING YOUR SON to wear a kerchief on the excuse of being in a "gang" or looked like being in one. While, I personally believe and support that legal action should be taken against the school / district authority to send a message out loud and clear that their inflexibility and ignorance were unacceptable, I am also concern about your son's future.
Getting your son at his free will back to finish up his highschool education and then to college is crucial. Alopecia should have no final say in one's future and decision. I believe that you and your family are doing a terrific job in supporting your son in his alopecia but eventually most of the decision rest with Jon. He is 16 and I understand how one 16 years old feel as it was not too long ago that I was one. Its very tough but he need something of good influence in coping with his alopecia. Your post said very little about how Jon cope with his alopecia except that he has quit school over it.
Jon has to start to realize that he is not alone in alopecia. I believe most of the wonderful people here at Alopecia World are most glad to write to the School Authority but I believe that it will not yield a desirable outcome which pertains to Jon's future in particular. NAAF as a registered NGO charity for Alopecia Areata of the US would be the best body to seek advise and help in sorting out this issue, I believe that NAAF has enough voice and strength in terms of its influence and legal basis on issue relating to Alopecia Areata.
As I am more worried about Jon in coping with his alopecia NOW as compared to how to deal with the school. I've been through the situation as Jon is doing now, it was a very very very painful time to deal with alopecia as his age, especially that he has QUIT SCHOOL because of it.
I have no problem in writing to the school if you want me too as I am most happy to do so. It is important for Jon to start reaching out to other Alopecia patients as Jon needs to know in first hand that he is NOT ALONE.
I believe that I have speak far too much and I will also email you a copy of my above response to your yahoo account.
Please let me know if I can do anything to help.
God bless.
-
Permalink Reply by Carrie Bell on
-
Sharon - My heart goes out to you and your son. I think it's important to find a support group for your son, so that he does not feel so alone. Regarding the school, I know it takes an extraordinary about of patience and time, but I would continue to try and meet with School Board members and the Superintendent of the District. I know how frustrating it is, but you have been your son's best advocate - and will continue to be! Good luck to you.
-
Permalink Reply by emilie on
-
I am a 15 years old girl who has alopecia universalis and I go to high school. I wear a wig and my eyebrows are tattooed so its probably easier for me because I can hide my alopecia. But some people can still see threw what im hiding and ask me if I have cancer sometimes ( because of my tattooed eyebrows and no eyelashes). I think about homeschool everyday. But I always tell myself that this is life, life is not meant to be easy and no matter what, I am not going to be influanced by anyone who tries to tell me that it would be easier.
I understand your son's reaction, I totally understand it, because I lost ALL of my hair when I was 14, and at that moment, I was going to ask my parents to quit high school because I think its the hardest part of life ( when people look at your looks)
I would be very interested in talking to him. Chatting or something, because we seem to have a lot in common. But I understand completely if he wouldn't. Just let me know if he does! :)
I really hope everything will work out with him. I wish you the best of luck!
-
Permalink Reply by NPC3 on
-
This breaks my heart. The people at this school are complete morons. You should sue them under the discrimination/disability act--they deserve it! In the mean time, how about having Jon wear a color bandana that is not associated with a gang like black or something? You need for him to get his butt in school, go to another school, do home school, do the night time GED, get the GED online, or something. Don't let him not finish high school over this.
As for the newspaper article, I say it's a good thing. Let the community know just how awful these people at this school are. A little bad press and they will probably change their tune, especially once they are flooded with angry calls from people all over. As for embarassment for Jon over the article, well everyone already knows he's got alopecia so nothing much should change.
I want to refer you to a forum that's mainly 99% men using invisible hair systems, www.toplace.com . There are several teenagers on that forum that wear these systems (bonded to the scalp for weeks at a time), they post tons of pictures and it is amazing how you'd never know they were wearing a piece (they swim in it, hike, bike, etc). The systems are inexpensive (about $200) and looks utterly fantastic. If he's not interested in that, at least he can talk with other young men with the same condition.
-
Permalink Reply by Cindy on
-
I am really sorry to read your son's story and all the pain and agony you are all going through. I do feel that your son's rights are being violated. He has a medical condition that it well documented and he should be entitled to cover his head as he sees fit. As beautiful as your letter is, I am not sure what impact it will have. I strongly suggest sending this letter to your local counsel, legislature, board of education and so forth until you can get your story heard. Even exposing the school neglect of your sons needs on the local news can put some pressure on them. If needed, I would find an attorney and file a suit against the school district and make an example out of them. I can be an extremest when I get irked, but it gets me what I want. I hope Jon is able to maintain his friendships because peer support will really help him get through this and you may want to think about having him talk to a therapist. You sound like a great mom and as long as he has family and friend support he will be fine. Unconditional love is the best medicine you can give Jon right now.
-
Permalink Reply by Joe on
-
I've been bald since I was 5 and trust me I know what he feels. Kids can be down right cruel and when teachers do nothing to help the situation it feels even worse. When I was in high school I had the same problem, the teachers and administrators told me I could wear nothing on my head. They basically told me to tough it out, and that no one would even notice. While most kids thought I just shaved my head and eyebrows and couldn't have cared less if I had hair or not, there were some that thought name calling and jokes were okay. Even though it was probably the toughest four years I've ever had in my 28 years on this earth, it made me the man I am today and i don't thing I would change anything about it. Four years seems like an eternity when you a teenager but once that four years is over your life is only beginning because once you graduate you never have to see any of those kids, teachers, or administrators again. Tell him he has to remember that he cant let people's perception of him determine his course in life because he would only be cheating himself out of living life to the fullest.
-
Permalink Reply by Vicsta on
-
I do not think you are out of line. Do I think the school is out of line - yes.
Your letter is well written and to the point. I hope that you manage to sort things out to your son's benefit. It is such a difficult time in his life and these are his formative experiences... the school should respect that and I do believe you have a very good case for your argument.
Best wishes,
Vicky
-
Permalink Reply by Trina on
-
I am so sorry to hear about your son. I too developed Alopecia in my 9th grade year. Within 2 months I was AU and my world was upside down. I wore a wig and it was the hardest time of my life. The teasing and taunting was horrible. I made it through and developed thick skin but to endure it is heartfealt. I think you should sue them in order to bring more light to this condition. I mean in a world with so much access to the internet you would think they would have the common sense to research it. It saddens me and maybe he can do some kind of home schooling to complete it because you need an education.
-
Permalink Reply by Patricia Lyn Rhue on
-
Sharon, I sent you an email regarding your situation and the help I can provide. I too went through school bald and am not afraid to stand up and share. I've been bald since the age of 4 and totally understand. I've contacted your community and we will get something rolling. Please check out my site www.iwearawig.com.
Look forward to hearing from you.
Pat
-
Permalink Reply by Nicole on
-
I am so sorry to hear a situation like this happening. I am going to pray for you & your son Jon. You are doing the right thing by putting all of those people on blast for what they are doing. Do they not realize that they are causing more harm than good. Teens have so much to face and it is not right for these people to force Jon to feel uncomfortable and have to quit school. I pray that things turn out for the best and that Jon is able to go to school and feel secure in his environment.
© 2024 Created by Alopecia World.
Powered by
