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 firstname.lastname@example.org. 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
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,