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 Erica on
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Okay - I am going to make a lot of insensitive comments here but I want to provide a different viewpoint.
Firstly - the school are behaving appallingly. They should be there to help their students through a difficult time and not have a problem with explaining to visitors that their student wearing a bandana is not in a gang.
Secondly - your son's education is important. He shouldn't drop out of high school because life isn't conforming to spare his feelings. The world is full of ars*h*les. Man up, accept the alopecia and get back to school. Jon needs some guts to be different, bald and happy in himself but I think he should find them fast or make sure he knows what he's going to do with his life without getting to the end of high school (an apprenticeship in a sector that encourages kerchief wearing?). Life is difficult but to use that old cliche, what doesn't kill you, makes you stronger.
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Permalink Reply by Mari on
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Sharon you have every right to be upset! I can completely understand what he is going thru. The first time I went AU I was 17 and a senior in HS. And leaving school is exactly what I did. At the time I was lucky and it had nothing to do with the teachers. All was because of the kids at school. There were so many rumors and snickers and snide comments. As a teenager we all know how difficult it can be growing and dealing with things, but add any extra stress and it can seem immensely overwhelming. Adults should have the knowledge and compassion to treat things differently I agree, unfortunately it seem the "No Tolerance" rules have overtaken all, and no one can think for themselves or have the guts to buck the "rules"! I know how hard this is for Jon and I am so very thankful that he has such a supportive Mom.
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Permalink Reply by Catherine on
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Keep fighting! I was in a similar situation in my high school. But being a girl I simply refused to not come to school without a bandana on my head. Then once I moved on to college I had a professor who marked me down every day that I wore a bandana to class without a medical note from my doctor in my hand. Needless to say I dropped the class and brought the issue up with the board of education and they were simply embarrassed that I was treated such a way by one of the employees of the college.
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Permalink Reply by Cecelia on
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Hi, Sharon... I replied earlier. I homeschool. I love who my daughter is... and I think school would change her for the worse. She's openhearted and generous. She friendly and confident. Homeschooled kids tend to be less judgemental and more compassionate. Obviously your son should have the education of his choosing... and if that means public school it should be his right to have that education... but a girl posted that she considered homeschool every day. I think homeschooling has some assumptions associated it with that aren't true. Many homeschooler network and have close friends outside the family. Certainly, in most states, you have freedom that you don't have when you go to school. Maybe you want to see if their are homeschool groups in your area. At the very least it might give him a reprieve, short term, so he doesn't fall behind. Here in WA there are "school at home" programs through various school districts. We don't do them. But you might look into that option.
Basically, I just wanted to say... there are many, many, many ways to get a solid education and have a solid social network. You might find that yours is outside of the traditional school system.
I know some people think you learn "social skills" in school. I have yet to see that happen. It is my very personal opinion the opposite occurs there. People learn to shut down rather than communicate through conflict. There aren't enough adults with good skills themselves to help children learn them. Schools seem so filled with hierarchy and policy. Red tape galore if you want to be seen as an individual. Life's too short... and as many have written here, high school was it's own type of hell... and then it was better in adulthood. Maybe there's a less painful road to pursue.
However, if you do proceed with challenging the school... you will probably make it better for the next kid. There's something to be said for undertaking that kind of responsibility for society. The question then becomes, "Is that something you and your son feel able to undertake at this point in your lives?"
If you want to explore homeschooling this organization has some good links, although I don't agree with everything they stand for:
http://www.hslda.org/orgs/default.asp
Found this one there. It looked interesting:
http://www.leah.org/
Blessing...
~Cecelia~
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Permalink Reply by Donna Hakim on
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Sharon - please don't let your son quit school. If the school is not being responsive to your needs, there is something called a 504 Plan you can apply for to become protected. Please see the info below on it. You can also read more at http://www.naaf.org/temp/aa_onset_schoolpack.html Click on schoolpack.
Do you Need to Construct a 504 Plan?
Unfortunately, most schools currently prohibit the wearing of hats within the classroom and many have
adopted a school-wide “no-hat” policy. You may therefore consider applying for an exception through the US Equal
Employment Opportunity Commission under the Individuals with Disabilities Act (IDEA). Here is a list of
resources that will help with this process:
Reference Sites:
http://www.chtu.org/504.html
http://idea.ed.gov
Contact Information:
The Americans with Disabilities (ADA) Information Line: 800-514-0301
US Employment Opportunity Commission (EEOC) Information Line: 800-669-4000
Resources:
Council of Administrators of Special Education, Inc.(1991). Student access: A resouirce guide for educator, Section
504 of the Rehabilitation Act of 1973. Albuquerque, NM.
Council for Exceptional Children, Department of Public Policy. (1994). The rights of children with disabilities under
ADA and Section 504: A comparison to IDEA. Reston, VA.
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Permalink Reply by Sooze on
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Sharon - don't give up. I am hoping & praying for you that the school see the error of their ways. Be strong. xx
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Permalink Reply by Dorothy on
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I have a son who is 16 yrs old, although he has a full head of hair and I am the one with AU, I can understand how he would feel about being forced to uncover his head and I can tell you the kids in school can be cruel and if it is the bandana that makes him feel comfortable, well then he should be allowed to wear it.
I would hope he might reconsider the newspaper article, attention should be brought to the community in general that this young man is being denied an education based on the narrowmidedness of people in authority.
Certainly there would be kids who might try to get away with wearing the same apparel, but that could be put down with ease. I would hope they might reconsider, if not I would be tempted to take the issue to court, I am certainly there are resources that would help with legal fees, if not fight the case totally free of charge.
Telling a person who has alopecia they can not cover thier heads with the items of choice is totally rediculous and highly prejudicial.
D
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Permalink Reply by Peyhton's mama on
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As with everyone else here I support you 100%! My 7 y/o little girl began her alopecia at age 3, what started out as AA has now turned to AU since the beginning of this school year. And though her classmates are quite accepting at their age, I worry constantly about how she will be accepted and deal with this condition as she progress through her school years. Knowing full well how much tougher it gets just for "normal" kids in school.
I totally agree that you should keep fighting this fight for not only your son but for others as well, you may very well set a precident that will help my daughter when she reaches her high school years!
Take the good advice you've recieved, keep pushing, keep fighting fairly and you will win this one for your son, for yourself, for all of us!!!!!!
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It is possible to request an Individualized education Plan-IEP. I would be curious to know how the school would handle tthis if it were a child with cancer on chemo.
Also, remember that while you are hurting for your son, you are the parent. How does your son plan to continue his education, home schooling, GED or certificate, adult ed program or private school? He needs to come up with a plan that is acceptable to you and him.
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Permalink Reply by Josh and Kiah on
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Thanks for sharing. Your anger is well founded. I think the school district is being completely unreasonable and I wrote them an email to express my support for you and your son. My daughter is not in high school yet, but her school has been very supportive of her wearing hats and scarves even though it is against the rules. I am posting the email that I sent. We will see if they reply. Let's flood them with emails and letters!
As a parent of a child with Alopecia Universalis I find it extremely irresponsible of your school to not allow one of your students, Jon, to wear a head scarf in order to feel comfortable with his alopecia. The excuse that people may think he is in a gang is outrageous; it is exactly that an excuse that allows your administration to not have to deal with a PERSON whose situation is an exception to your rule. My child attends Milwaukee Public Schools, a school district that does have a gang problem. However the administration has enough compassion, and understanding to allow an exception to their rule for a medical condition. No one in their right mind would walk into a school, see one person with a head scarf on and say the school has a gang problem. If they did, a simple explanation would clear it all up. The person has a medical condition, they have no hair, and so they use a head scarf... that’s it.
Looking at your website I noticed that the end of your motto is "...to produce literate, caring, ethical, responsible and productive citizens who are capable of adapting to change". How ironic when the citizens set with the task of helping to produce those individuals are themselves unable to adapt to change and behaving in a manner that is anything but caring.
I hope you revisit this issue and reconsider your decision based on reason, compassion and logic. I am sure that a compromise can be reached that would allow Jon to feel comfortable in school, and clear up any confusion that his kerchief if gang related. Please allow common sense to rule the day.
Sincerely,
Josh Lang
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Hi
My son is also in high school and has alopecia. He had a very stressful junior year and what was alopecia areata has now become totalis. (he is now a senior in high school) He shaves his head and also has permission to wear a hat at school, all of his teachers totally understand. When he previously had a bad flare up in grade school they also let him wear a hat.
I will keep your family in my prayers for some resolution.
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Permalink Reply by Lori D. on
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Your post brought me right back to high school. I had AU in school starting in the third grade and right through high school...then, for whatever reason, it progressed to just AT where it has remained for 20+ years. I'm so sorry your son has gotten such a negative, non-supportive response from the administration. I work in a school for kids with severe behavioral issues...many have been arrested and have probation officers...many are in gangs and are involved in drug use and criminal behaviors. One of our school rules is "no bandanas, no headbands." So I can understand the school's position. However, your son has a disability, and along with his disability, he has rights. He has a right to be able to focus on learning and not to be consumed with self-consciousness while he is trying to learn. I would certainly seek legal assistance with this matter. There are laws that protect individuals with disabilities. I wish you the best.
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