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 KIM - Jessica's Mom on
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I'm appalled at the insensitivity to your sons condition displayed by the principle. I'm disgusted that we lived in a world where we have to give up rational thinking to accomodate our fear. Gang members also wear athletic shoes. Should we ban these from schools as well. Educators should be concerned with educating our children and I'm all for dress codes that restrict clothing that may distract other students from learning. Do away with 4 ft tall mohawks, facial piercings, and immodesty! But, a kerchief.....come on!
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Permalink Reply by sharon on
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your situation also makes me angry ,your son does need an education tho and wehter or not he waers the scarf to school there will still be bullies and i know you say it is your sons security blanket and that is very hard for him to go to school with out it if he quits school it is only him in the long run that will suffer the school will not care he is jus one child in hundreds, so tell your son stand up be counted do not fade in to the back ground and finish his education . i do know how he feels i 2 like every body else had a rough time at school but my dad sent me boxing and i stood up for my self but there where still cowards who pulled my wig off and ran away and i have to say i did not finish my education and have always regretted it although i went back to college later in life but i will always regret letting those s.o .bitches beat me . yes take it up with who ever can help with the bandana thing but really really i hope your son gets mad enough not to quit x
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Permalink Reply by Suzanne Thompson on
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Wow! this has really generated an influx of discussion. I hope you and Jon can wade through it all and find an acceptable way to proceed. Lots of good info. Agreed that first and foremost is Jon's feelings in all this. And finding a way for him to get an education. Luckily, we live in a time where there are lots of options. Working with the school to find an acceptable solution is a good goal, however, my experience with schools and school districts is this: the squeaky wheel gets the grease. It appears to me that you have tried working with the school. Your letter is dated September. It is now January and you have received no reply. Sometimes, just the knowledge that you mean business and will proceed with calling on the justice system is enough for them to take the time to sit down with you and figure out a solution. Sometimes, you actually have to go through with it. I don't think having the ACLU get involved (if it comes to that) is necessarily "dragging him through" a process. What does Jon want in the end? What are his goals with this situation? Does he simply want to attend this school, free of harassment? You, as his parent, are his best advocate. Yes, he will have to develop some thick skin in dealing with this disease. But he shouldn't be forced to expose himself (in a very literal sense) before he is ready to. And here is a goal for Jon to consider...taking the BRAVE step to advocate for HIMSELF, instead of letting these uninformed, ignorant bureaucrats and peers dictate how he moves through the world. He is two years away from legal adulthood...
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Permalink Reply by Kevin on
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You get a lawyer, and take that principle to court. thats inhumain to think that the principle would say that, i had/have alopeica totalis when i was in the 7th grade all my hair was gone by 8th it grew back by 9th im in 10th now and im loseing it again. What was done to me in my times of being bald was monsterous. It turned me into a person i didnt even want to be around, but i never got mad, i never fought anyone who made fun of it i just smiled and walked away. some 1 year after i was starting to heal from the pain that was inflicted on me. Kids dont get the fact that its involentary and theres no way anyone could know my or anyones pain whose ever had AA or AT or AU unless youve had it, so therapists or parents are just no good, i totally understand your sons reasoning 100% im not saying its the right choice but i totally understand and i remember it was the hardest thing getting up in the morning and knowing youd have to go to the bathroom and see yourself in the mirror, i wanted to remove every mirror from my house. And the only thing you can do about alopecia is cry cause theres no cure so my advice would be to take that principle to court and get jon his bandana and maybe then he'll have some security in school. I really hope he gets his hair back. and i hope you work this out.
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Permalink Reply by Jo-Anne on
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I am so sorry your son felt he had to quit school. Is he now being home schooled? I have a son who also has Alopecia ariata. He has lost his eyelashes, eyebrows and has patches for hair. I recently went to the local flea market and purchased several skull caps. I bought a plain black one so that there would be no confusion as well as several paisley ones including one that sports the colors of the school blue and white. Last year the school refused my son wearing a bandana however just around xmas this year my son with the patches decided his head would be better sahved as there are just to many patches. I wrote a letter to the school explaining that his Alopecia had progressed and that the need to protect his scalp is high as well as protecting his eyes. We are trying some lotion for his scalp that was recommended and mentioned that in my letter. I have not heard anything from the school however my son wears his skull cap every day. I hope this experience does not have a huge negative impact on your son. Our children deservethe best they can have and what we can offer. I wish you and he luck in this journey. Jo-Anne
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You did exactly the correct thing! And through all the proper channels! I am in the education system in another state and I can pretty much assure you this would not have happened here. Students are seen as individuals with individual needs. A simple 504 plan could have been written for his "disability" with specifics for wearing a bandana. The school might have asked to stay away from "typical" gang colors. But I have seen many kerchiefs that do not represent any gangs. I also understand the baseball hat. It DOES NOT cover all the head. I won't wear one either. The school is there to provide an education for your son, not encourage him to quit. Are you aware that there are some high schools online where he could finish his HS degree? Linda
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Permalink Reply by Sharon, mom of Jon on
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I AM GRATEFUL FOR AND HUMBLED BY THE REPLIES THAT I HAVE RECEIVED. Thank you for your replies. I have read each of them. I had previously searched and searched for forums to talk about what we're going through without realizing that such a strong support system was already within my grasp. As for Jonathan's education, though Mrs. Lapaglia was oblivious to the fact that Jon's education should come first, his former high school guidance counselor hooked us up with a GED program through Catholic Charities. He meets with a very nice young man every Thursday at our local library to work on his GED. Jon has a plan. Once he's 18, he hopes to join the Coast Guard. My mom is an older woman and her thoughts on that are that "they wear their hair short there, anyway, right"...LOL
As for the ACLU or legal counsel, we did consult a lawyer. Our mistake was letting Jon quit school. Had they expelled him, we would have grounds for a law suit.
Thanks to whomever pulled up the crime statistics in West Seneca, which made Officer Marano's fear of gang violence at West Seneca East Senior High School look even more ridiculous.
I've got some email addresses, if you have the chance. Thanks to everyone, especially from New Zealand, who offered to send actual paper mail. The email address for the principal of Jon's school is alapaglia@westseneca.wnyric.org
and the assistant superintendent is bwiley@westseneca.wnyric.org
If it appears I'm trying to start a letter writing campaign, well...I am.
Again, humbled and grateful for your support,
Sharon, mom of Jon
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Permalink Reply by Eileen Simpson on
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I would like to send this letter to the super: but will wait to do so until you have read it. Please let me know and I will be more then happy to send it. Feel free to twik, fix it and then maybe we could all send it to him via our mail.
Thanks here it is:
Hello my name is Eileen and I am a member of Alopecia World online the day before yesterday I read a post about a student that went to one of your schools he has Alopecia Areata a serious hair loss autoimmune disease. He was told that he could not wear a bandana to school due to gang violence. If you or anyone you cared about had AA you would understand how difficult this disease really is especially for someone fighting peer pressure and going to high school. School is difficult enough without being different. Consider for a minute that he was your child what would you have done? Please do not ridicule a student a person for something that he doesn't want, something that he never asked for. No child left behind act, this only means that now he is left behind because your school district couldn't accommodate his needs. What a shame that doors were closed on those in need.
It is a real shame that your district couldn’t accommodate his needs as this condition could fall under the disability act. It is truly a sad day when shame is brought onto those that are different. A voice is lost somewhere in the crowd that pleads for the identify that is taken because of those differences.
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I am Maritza, my son age 6 suffers from AU since age 6 months. I can't imagine how your son feels on a daily basis going to school in a cruel age where people are sooooo insensitive. People like that have no empathy and don't ever imagine that something like alopecia will affect them or their loved ones. As I read your story I was thinking, why can't he where a hat, but then I got to that part of your letter. Not defending the school at all or their policies BUT as you said everyone at the school knows he has alopecia univeralis, so I'm figuring the problem is that he probably doesn't like exposing any part of him, b/c it causes people to try to get a peek out of curiousity. He wants to ensure that while they know he has AU, they aren't trying to invade his space and his pysche by staring more than they would and trying to see an area exposed by the baseball cap. Is there anything besides a bandana that he can where that would satisfy both the school policy of bandana and make him feel confortable.
I'm not sure if perhaps gang affiliations are quite severe in your area, but in NYC where I come from it's pretty intense and safety to the student and those hanging with the student must come first. I see a light at the end of the tunnel. Did you join CAP kids? It's the children's alopecia project and their goal is to help children afflicted with alopecia build their self-esteem. By the way, I homeschool my son, not b/c of his AU and not to mention his severe food and environmental allergies BUT b/c I chose to when he was in my belly and it's been a God send since as it turned out he had these very severe medical problems. Is homeschooling an option for his last two years of H.S.?
Good luck, reach out to me if you need more guidance.
Maritza
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Permalink Reply by Nathan Paul Prince on
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I think another option could be wearing a toque (pronounced tewk). I've been in the States before but haven't really seen them around anywhere... but there are quite a few groovy looking ones on our side of the border.
I used to wear bandannas all the time, because I always got a bit chilly with no hair (we lose 80% of our body heat through our head). That gave way to wearing toques when I got one for Christmas from some friends - I hadn't even thought of that. they thought it might look a little more "comfortable" around the office... I guess there is a negative connotation to wearing bandanas in public - mostly just because of what we see on television, which is lame (that whole monkey see, monkey do attitude).
Toques kept me warmer too. And they come in different materials (mostly knits but there are cottons and synthetics now, from different designers - Roots is a popular brand up in these neck of the woods).
Now I pretty much am used to seeing myself bald at the office, and everyone else is as well. I used to think I felt like an outsider, but it's all pretty much just because after banging your head trying to "look like everyone else", it makes way to the whole "I like how I look - I look like me" set of thoughts.
If I go out, though, I will wear a ball cap - I got sun stroke once at a wedding and it wasn't fun! I was walking through the parking lot after spending the better part of the day posing for album pictures, and crumpled in the driveway in front of about 150 people... So head coverings are a pretty good idea for a variety of reasons.
He'd look pretty cool in a toque though - I know I liked the look after I got past wearing bandanas... it's an option.
But I agree with the way you handled your son's school affair - there is room for leeway in some cases. Schools just pigeonhole students too much these days... conformity and all.
Cheers, from British Columbia!
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Permalink Reply by Erin on
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That is tough. I got my AU in highschool at 15 as well and so hard to deal with at that age. My school was very strict against hats and stuff in school but did allow me to because of the situation. I do believe that they should let him as well. Even just a plain black bandana or something!
Let him know he is not alone, that many of us have gone through it, and it would be good if the news ran it I think, but if he is uncomfortable that is understandable. High school is so cruel, he needs to know there is much more to life and anyone who bugs him about is Alopecia is trying to make themselves feel better for their low self esteem. As some others said, he will will be such a strong Man because of this and needs to know that. I hope it gets better soon!
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