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 JeffreySF on
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I'm sending a Poison Pen Letter now!!!
United Together, We'll Never be Defeated!!!
Grrrrrr
Jeff
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My letter starts with
Wake up and smell your Starbucks
I've got the rough draft prepared. Just deciding on some choice words
Meow,
Jeff
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Permalink Reply by Eileen Simpson on
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Hi Sharon
I don't feel that you have said anything wrong in you letter. I do think that you should contact proper people. Another think have you ever home schooled? It could be what you need. Or maybe another school private different district if he is driven it might work. This truly makes me very angry that such a thing can happen. Is there anyway to write you congressman and receive support somehow from them?
Best of luck
Eileen
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Permalink Reply by Carol on
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I know you've already recieved tons of responses from this posting but I just wanted to let you know that I can understand how your son must feel. I know that my wig was my security blanket throughout high school and at that point in my life I wasn't ready to reveal my head to anyone except my parents and maybe a good friend. From time to time I forget what that's like. I've dealt with alopecia for 30 years, I'm 31 now. It wasn't until my early 20's that I finally "woke up" and decided I didn't care what anyone thought of my head anymore because I liked myself even my "alopecia self".
It would be plain human compassion for the school to allow the bandana, especially if that is his security from alopecia. Being a teenager is hard enough let alone having alopecia, together it can be a recipe for trouble. When I went to school everything was swept under the rug and somehow I ended up getting the brunt of any disagreements however these days kids and teens are sharing their alopecia stories with their peers and some their entire school which I have found to be quite effective in not only peers being able to accept this disease but the child themself! That doesn't end all their problems but other than this whole bandana thing he seems to be leading a very healthy life and even the healthiest lives have their ups and downs. Whether your son returns to school or not, feed his potentials, our suffering makes us great and understanding individuals. If there is a local support group for alopecia it would be good for your son to meet other people with alopecia too. Keep us posted!
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Permalink Reply by BaldGirlsDoLunch.org on
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My opinion is that the most compelling issues are what your son does or does not feel comfortable with his parents doing on his behalf and just as importantly how your actions enhance or erode his relationship with you. Nothing is more precious or essential than that.
Going to battle publicly or through filings and determinations is usually wrong for the emotional welfare of a teenager and fabric of a family.
Nothing is more important to a teenager's well being than the trust and honest ability of his parents to really listen to him without judgment. Doing anything with the purpose to vent, or simply make the school look bad or anything with the potential to embarrass your son is ill advised. To calmly and rationally work to alter the school's admin policy is the real goal....getting more options for your son and making it better for the next child
I'm opposed to parents trying to make a point and drag their kids through "a process" when it has no probable tangible benefit and may very well set the stage to erode the solid trust that teenagers and their parents need to preserve above all else.
Identify your goal and stick to a plan to get there. As said in my earlier post: do everything you can to take the high road and demonstrate that civil compromise with the school, etc is likely to be the best all round solution for everyone. Be a really good example to your son of how to handle these kinds of situations...which come up all through life in one way or another. The way you demonstrate how you handle this has ramifications very far down the road. Turn this into a valuable experience. I think that trying to bring a case,prove a point and drag your child ( as if you could) through endless layers of documentation and hearings is misguided advice and may erode your relationship with your child
Thea
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Permalink Reply by kristin on
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hey Jon, i know this sucks right now, but believe me it will get better, much better... don't ever stop being you and dont ever stop believing. You have a lot of people here and we all support you and we are all on your side. Unfortunately there are a lot of people who don't get it and frankly they are just going to have to get over it. Rock on Jon.
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I've read all of the posts on this discussion and sent a letter to the powers at be.
Sharon, have you contacted NAAF or CAP for assistance and their sugesstions?
Thank you to everyone at Alopecia World for their responses and support for Jon
Jeff
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Permalink Reply by Ashton on
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I am so sorry for your son i am 15 and i have AA, my friends do not understnad it. also my best friend goes to a differnt high school and is 14 and has AU and her school allows her to wear a hat ut her school is a pulic school but mine is a private school and our uniform is very strict and i am not sure if she went to my school i hope that they would let her wear a hat there so i wish you the best and i pray for your son.
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Permalink Reply by Buddy Daniels Friedman on
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Hi Sharon & Jon, I have had my A.U. since I was 36 about, and it was a struggle for me to adjust, but I did, it took a couple of years and more than anything else, the Alopecia family I meet from going to 16 years of NAAF Conferences, For what you are going thru there are a lot of other roads to a good end, To Fight with Attorneys and or groups, that will stand behind you, or to find a better High school, or to wear and ajust to what the School says, Or not, BUT MAINLEY ......NEVER let it stop you from doing what you want to do, and to keep on moving forward. This is just a little Glitch in life, which in years to come you will smile at, cause of the lessons and the strength you will get from this.
You can be angry, your choose, but a better choice is to not let them get to you. Smile and laugh at the stupidity, of some Humans. You will win this no matter what, believe that, for that is the SECRET.
Your Brother in Alopecia .....Buddy Daniels Friedman
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Permalink Reply by Patricia Lyn Rhue on
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Sharon, I know you are suffering and Jon is having a hard time. I lost my hair at 4 and understand the cruelty of children. My wig was pulled off, taken to the boys room with me having to ask someone to go in for it. It was the worst time of my life, BUT I didn't let them win. My dad taught me to be honest and face the fears, because i would come out on top in the end, which I did. There isn't anything that I haven't done that my hair loss could stop me from doing. I tried lying as a teen, but my dad one day gave me some tough love and I tried his suggestion - Be honest when asked. It worked. That is not to say it wasn't any easier, but no one was going to prevent me from graduating from high school or college. I had a dream and it was going to be fulfilled. I also know as a parent of a senior in college, we have to be the anchor for them. First, you have to make him go back to school. 2nd, the school is willing to meet you half way with a hat, that is a huge give from them since schools don't allow hats. 3rd, for his own safety, he doesn't want to wear the scarf BECAUSE it could possible cause him harm if another gang took offense to it. It isn't easy Sharon, but as someone who has been in his shoes all my life he will gain total control and since boys like to shave their heads today, he has an advantage. You can't let him quit school, his future will be much brighter and he will be a better man for going through the hard times. When I hit college, it stopped. No one cared if I was bald and I can't even remember the names of all he people who were so cruel. I am speaking from my heart and knowledge. He will soar so high if he moves forward. If he or you would like to chat, please visit my site www.iwearawig.com and click on my "Pat with Chat." Stay strong - he needs a strong foundation in his parents. You know what is best.
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Permalink Reply by Lynn AKA Mom of 2 w/AA on
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Dear Sharon:
I'm sorry to know your son & family have to go through this. I think it would be a good idea to send the same letter addressed to the School District (if there is one in your area), as well as to the State Board of Education ~ be sure to "cc" the folks you wrote to in the first letter (at least they will know you are not messing around, and this is serious stuff!) Also, maybe this school is not the right school for your son. I hate how public schools make any situation or problem the parent's problem, rather than just dealing with it properly - like they should. Have you given any thought to applying for "full ride" scholarships to private schools in your area? Even if it is a religious private school, all religions are good. You could call around and find out how to apply for a scholarship. If you are stuck with this school, maybe a "home study" program would be a better option than him attending every day ~ a school where the administration is sooooooo flawed. Best wishes always.
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In addition to my last post, an immediate remedy for this situation would be for you to get a note from your son's doctor (or dermatologist) addressed directly to the school which reads, "For medical reasons (your son's name here), must be allowed to wear a kerchief at all times." That's all you need and the school must comply with the doctor's note. Three years ago, when my daughter was eight years old, she lost 1/4 her scalp hair atop her head (complete regrowth followed, after six months). She was under the care of Stanford Professor of Dermatology Alfred T. Lane. When we couldn't cover her hair loss with a side pony tail, etc., Professor Lane wrote a letter to my daughter's school which read, "For medical reasons (my daughter's name here), must be allowed to wear a hat or kerchief at all times." She opted for wearing a half head scarf which fit snuggly. After my husband and I gave the note to the school, we didn't have any problems. If your son's school wishes to violate a doctor's order, then maybe we all at Alopecia World should start a major letter writing campaign to your state's secretary of education onto the federal secretary of education, cc'ing the adminstration of your son's school in each and every letter!!!!
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