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

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Sharon,

I believe your letter written is right-on-target correct. Schools must find a way to accommodate all students regardless of their differences or similarities, which includes the necessity for those in charge of the school to create environments that encourage peer students to embrace and not ostricize certain students.

I send you and your son my best wishes, my best wishes for a better and more hospitable friendly world.

Gordon
HI, Iam so sorry that your son has gone through this. I've had alopecia since the age of 2. Kids can be very cruel. My suggestion would be to get a medical doctor who deals with alopecia patients to put together something to show the school. It might help. I would encourage your child to try to get his GED through a local college if he is not able to go back to school. He should be able to wear something to cover his head. The way you all have been treated is really bad, I feel for you and your boy.
Hi Sharon,
Firstly my heart goes out to you and Jon. Be strong and confident for both your sakes. Now, I haven't read all the replies but I may be able to add a perspective that has not been voiced yet. At Jon's age I had Alopecia Areata and I wore a baseball cap to school every day. I know not everyone knew about my condition but some of my classmates did. I only had one incident with a teacher who asked me to remove my hat. The teacher did not know about my condition so I can't fault her. What I did was simply stood up infront of the class and announced that it was her job to "teach" us regardless of our attire and if she continued to insist that I remove my hat I would march down to the office and make a formal complaint that she was not fulfilling her contractual obligations to provide an equal learning environment for all her students. I also announced that I would make a formal complained of harassment against her and if the school agreed with her I would also name them in the harassment complaint. My fellow students were very silent during my speech and when I was finished they applauded. That felt really good. The poor teacher was shocked and embarrassed. She appologized to me infront of the class and asked me nicely to sit and continue learning the lesson.
Through time my alopacia began to worsen and that was during the decade of the 80s...the "big hair" decade. I couldn't take it anymore. At 16 years of age I too quit school. My parents were understanding; the school wasn't. I was an honours student and I think the school just couldn't come to grips with an honours student quiting on them. What I did was formed an informal agreement with myself and my parents that I would quit for 1 year. After that 1 year I would re-register at school regardless of my condition. That was the best thing I ever did at that time. It removed the massive amount of stress I was going through and during that year all my hair grew back. During my year off I just got a local job and hung out with my friends; the friends who truely liked me for me and couldn't care less what I looked like. I was able to finish school completely normal. The first couple years of post secondary school I was also normal but then the cycle continued again. Now at 40 I have AU....but this is not about me.
I have a couple suggestions:
1. Don't be upset with Jon quiting school; accept it. Form an agreement with him like I did with my parents, it will eleviate a lot of stress for both of you. He may need more time but do whatever is necessary to ease his reintegration into school. I understand that he has AU and his hair most likely will not grow back but during the time off he may come to grips with it and begin to accept it and learn to deal with others' ignorance.
2. During his time off have him wear a ball cap now and again....after a while he might get used to it. Convince him that a ball cap is better than the bandana because other people might think the bandana is a symbol of gang affiliation, and a ball cap is more normal for a 16 year old boy (or young man :-)) to wear than a bandana. It could be for his own protection and I suspect that that is how the school board and the police officer involved may see it also.
3. During his time off try to come to an agreement with the school. Try to agree on an acceptable form of head dress. If they will allow him to wear the ball cap then it sounds like you have to convince Jon to wear it. Maybe make that part of your initial agreement with him.....like you will come to terms with him quitting for a period of time if he agrees to try to wear the ball cap...I know he'll get less "looks" wearing the ball cap than a bandana because a ball cap is really more normal than a bandana for a teenager.

I really hope some of this helps.
James X.
While girls are typically allowed to wear wigs and scarfs, Headkerchifs are not usually permitted. However, you can have a doctor provide a statement to allow your child to wear a protective head covering such as a soft SCULLY (kind of looks like a stretch spandex cap)-made of stretch cotton or crotched or even a men’s dress hat such as Dobbs stingy brim might be acceptable and would not look ‘street-ish’ if that is the concern.

But, if he is being bullied, it is a police matter and if the school has failed to respond appropriately they are liable.

Good luck.
I too suffered with Alopecia during grade school and H.S. in the 80's. It was very difficult to say the least but I made it through fortunatly. It is very upsetting as a parent to know that this little thing called Alopecia can do a lot a damage mentally especially during our childrens formative years when they are dealing with so much during the journey to adulthood. Life is not over for your son if I could suggest GED classes at maybe a traditional college where he could wear what he wanted in school (bandana, hat, etc). After GED he could then go to traditional college where again there would possibly be no dress code and he could move on with his life. During GED and College he could then do some research on what to do when he is not able to wear bandana, etc in the work force. (Just go all natural, hair pieces, etc). I may not be saying anything you don't know but I hope this helps in some form or fashion. I want to say Mother to Mother take care.
My son was 14 and in the last couple of months of junior high when his hair started falling out. He kept trying to find ways to comb his hair so it wouldn't show. When I suggested he wear a hat he emphatically told me that NO HATS WERE ALLOWED AT SCHOOL! Being a mom, I told him that I would make sure that he could wear a hat to school. He was so relieved. So the next morning I wrote a note and escorted him and his hat to the office. I explained the situation and gave them a note for their records and he went off to class with the hat on his head (and a copy of the note in his backpack). The school was SO helpful and understanding that I was in shock. They told us that he could most definitely wear his hat or anything else he wanted to cover his head. If any teacher were to question him he was to show them the note. If a student was teasing or bullying him he was to report it to his counselor and she would handle it. The counselor even called me on several times to see how he was doing and even called his future high school counselor before summer so they would know to expect him. Within 3 months he went AU and spent the summer dreading high school. The hardest part was the school pictures that had to be taken, for ID purposes, the week before school started. I did my mother-thing again and called the school to get permission for him to wear his hat for pictures and all went surprisingly well. His hat of choice by this point was a fedora. He was pleased to find out that people were identifying him by his hat, not his hair loss. He even told me that he intended to continue to wear his fedora after his hair grows back. Just a few of weeks ago we found out that the hair loss apparently wasn't due to anemia, as originally thought, but an autoimmune issue and quite probably is permanent. Now, although the school has been extremely supportive, my son's grades are starting to fall. The teachers are telling me that he isn't participating in class any longer, that he just seems to zone out. I know that he's dealing with a lot, before it was temporary and now he feels his whole world has changed. He says he's dealt with it and he's just fine, but that's not what I'm seeing. He won't talk to a counselor and I'm at a loss as to what to do next. Quitting isn't an option at this time, but if his grades keep falling I don't know what I'll do, I may have to home school.

As a mom I feel for you and can only offer you the advice to FIGHT ON! We have to show our children that we are there to support them and do whatever we can to make this time in their lives as "normal" as possible, allowing them to achieve everything (or maybe more) than they would have if Alopecia had never entered their precious lives. I do believe that God doesn't give any of us more than we can handle, but He doesn't say we have to handle it alone. As moms we are undeniably on this journey WITH our children and I know that I gain my strength daily from prayer and then attempt to lift up my son and make his burden lighter.

Connie
Hi Sharon
Wondering how you and Jon are as it's been a couple of months. I am stunned with the narrow mindedness of the school and am willing to write to support if it's not too late!
Sam
I'm very sorry to hear that. I too had her as a principal and let me just say it doesn't matter if you're the worst kid in school or the best. She absolutely despised me. I was a student that just came back from having a stroke and she refused to give me my schedule. She was constantly calling me to the office. She tried to expel me because I wore baggy clothes. Her exact words to me were "you're a bad kid because of how you dress." I wasn't a bad kid until she called me one. Then I made it my mission to be a "bad" kid. I did graduate on time and she claimed she was mean to me to make me stronger. Bitch please! You were just a miserable hoe. I'm not surprised she said your son looked like he was in a gang. She just wants everyone to dress like the 1940s. Long skirts and dresses and zoot suites. Honestly I'm happy to hear he quit school because she probably would have tried to get him expelled for no reason. Good luck to your family. God bless.

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