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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Life with Harlequin Ichthyosis: The Downs of Middle School

Today’s guest post is from Hunter, who is a teen affected personally with harlequin ichthyosis. She is featured on Extraordinary Humans: Skin, and The FIRST Story, and has been very active in spreading awareness and lending support to many of the moms of younger children already featured here.

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I’m so glad to be a part of this Harlequin timeline. Part one of my story is about my middle school experiences. My high school experiences as well as any relationships and beyond will be the topic of next week’s article. My middle school experience was an interesting one, to put it lightly. I spent time at two different middle schools. And at both I had trouble with my peers.

I entered 6th grade at a local middle. As part of my 504, some air conditioning units were placed in two class rooms in the school. The building had central heating but not cooling. So, the ACs were placed in two of my rooms and then teachers and student schedules were adjusted to fit that placement so that I could be in those rooms for two classes a day. On the physical needs side of things, the school did everything they could to accommodate me. However, dealing with my classmates and the rest of the school was more difficult.

Throughout my school career, I have dealt with bullies and ignorant teachers. Usually things were at least tolerable. Incidents would occur and I would report it to the right official and it would be handled as best they could. Of course there were never a lot of things that could be done because it was always another student’s word against mine; there were never witnesses, but at least in elementary school the teachers did what they could.

In this particular school I had to deal with the same ignorant bullies that I had in elementary school plus a new group from other elementary schools that hadn’t grown up with me. The way they treated me is very hard to describe in a way that other people can understand but I will do my best.

Let me walk you through a day in my 12 year old shoes. It started on the bus every morning. The first great question was where to sit. Usually, I sat with a small group of friends, but if they were seated in a full booth, I had a problem. I could usually find an empty booth and sit, but the rest of the bus ride either involved snide comments, cold eyes and people avoiding me. There was nothing the bus driver could do. They weren’t fighting or throwing things, just isolating me, which isn’t a bus offense, though it still hurt. My friends were not the kind to stand up for me. I had to deal with that on the ride back from school as well.

Then, once I went to class, the games began. I had the type of bullies that would laugh at someone else’s expense. So they would take someone else’s paper or pencil or something and drop it on the floor. Then they would come to me and ask me to return it to so and so. Because I was kind-hearted and gullible, I tried to help by returning the object to the person. Of course that involved touching it and the object’s owner was not too keen on that idea. Usually there would be a big scene and I would end up embarrassed and sometimes in tears.

Where was the teacher in all of this? They were right in the room and did nothing to stop these antics. When I approached them about it, they would say they never saw anything, even after I continued to  tell them about it multiple times a week.

Gym was a whole other ball game (no pun intended). Of all the classes I didn’t want to attend, gym was the one class I would actively try to avoid.  In gym, many games involve touching a ball and throwing it to other people to catch.  Any time I got the ball in class, my classmates would throw a fit. They would say things like, “Oh, I ain’t touching that!” or “Get that away from me!” And in reverse, they would go to great lengths to keep me from playing and from touching them or the ball that everyone had to touch. And just like with the other teachers, my gym teacher would not hear or see anything either.

After a time of getting nowhere with the teachers and being labeled a tattle tale, I went to the principal, asking for help.

He told me that he would do his best to help find those students and see them reprimanded for bullying. I was happy. I thought I had found someone who could do something. But I was wrong. He spoke with the teachers and told them to be on the lookout for subtle games and antagonizing behaviors. I told him exactly what they needed to look for. I have no clue how much they looked but it seems that they were purposefully ignoring the incidents. Nothing changed and things only got worse when the bullies realized that nothing was being done. They could get away with it and so they started acting out right in front of the teachers.

At lunch, people started calling me names as I went up to get food or throw something away. The teachers on lunch duty did nothing. I went to the principal about this and he told me that things would be taken care of. Nothing happened and the incidents continued. Eventually, things got so bad that the principal was trying to catch kids for things that had happened weeks ago and was far behind on the current events.

When I entered 7th grade, I was hoping that things would change. Unfortunately, things got worse. Until this point, all the incidents were verbal and emotional. I was isolated and belittled and humiliated but no one had the guts to attack me physically until now.

In the first month of 7th grade, I was physically assaulted twice. The first time was in English class. Someone took a piece of broken crayon and threw it at my head. I had a bump on my head for a while after that. Nothing happened to the responsible student. The second time was on the bus. I went to sit down next to a girl I did not know. I asked her if she wouldn’t mind me sitting next to her. She said no. The way I had phrased the question, that meant I could sit. So I did. As soon as I sat, she screamed, “No!” and kicked me. I landed on my friends in the booth across the aisle and the girl jumped over the seat back into a booth that was already full.  She was suspended from the bus for a while. But that only meant that she wouldn’t be on the bus; she was still at school. Her mother defended her and claimed that she had done nothing wrong.

After a third incident, Mom pulled me out of the school and threatened to sue the district if nothing was done. They told us they would let me change schools and that they would help me any way they could.

I went to my second middle school in the fall of 7th grade. The other school was farther away from my house and I still had problems but at least the principal did not tolerate bullies and did something about it. It was a step up from my first middle school but there was still a lot going on. This time it was more with the adults. For example, I had trouble with my bus driver.

She started out nice, but as time went on and I got to know her, she did not treat me well at all. She would play very loud music and it hurt my ears. If I asked her to turn it down, she would say, “Is this your bus? No, it’s not. I will keep it up and if they want it louder, then I will turn it up.” The rest of the kids on the bus were on her side, so I never won the argument. She would do other things too and I told who I was supposed to when things happened. She got tired of dealing with the administrators about it so she decided to leave our route. That made the kids on the bus think that I was having her fired. They ganged up on me and it lead to some fights.

My second middle school was not the best environment to be in but it was far better than my first middle school had been.

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We are not doctors or medical professionals. A doctor or nurse looking to confirm or consult on a diagnosis of harlequin ichthyosis should immediately contact FIRST, the Foundation for Ichthyosis and Related Skin Types because time is of the essence and specialized expertise is critical in caring for a newborn with harlequin ichthyosis.

Part 1: Life with harlequin ichthyosis: The basic science behind harlequin ichthyosis
Part 2: Life with harlequin ichthyosis: Newborn Surprise
Part 3: Life with harlequin ichthoysis: In the NICU
Part 4: Life with harlequin ichthoysis: Going Home
Part 5: Life with harlequin ichthoysis: Ups and Downs in the First Year
Part 6: Life with harlequin ichthoysis: Toddler years
Part 7: Life with harlequin ichthoysis: Starting Elementary School
Part 8: Life with harlequin ichthoysis: The Downs of Middle School <–You Are Here
Part 9: Life with harlequin ichthoysis: The Ups of High School
Part 10: Life with harlequin ichthyosis: Moving Past School
Part 11: Life with harlequin ichthyosis: A Harlequin Pregnancy

 

5 comments to Life with Harlequin Ichthyosis: The Downs of Middle School

  • Darcy Carlson

    This is similar to my experience in school and in daycares. I am sorry that you had to deal with this, Hunter!

  • Rachel

    Hunter’s draft actually triggered some fairly nasty memories for me the first time I read it. I remember having a really horrible time riding the school bus when I was in junior high. No one wanted to sit next to me and there were a couple neighborhood kids in particular who were especial tormentors. I actually wound up begging my mom and dad to drive me to school so I wouldn’t have to deal with them.

    I attended a fairly large junior high and high school (about 500 students per graduating class). The people who knew me — mostly the ones I knew from my honors/AP classes — treated me decently. I had several run-ins with others, though. Wow, I really hated lunchtime.

    Yeah, those are horrible memories for me. But, as they say, living well is the best revenge.

  • Keith Charsha

    I had pretty much the same experiences as Hunter and Rachel. I went to a small catholic school for 1st through 6th grade and had my 3 older sisters in the same school so I was protected as much as possible by them. The teasing was minimal at first but I have come to realize from my own memories and others that the teasing and bullying starts out in 4th or 5th grade and progressively got worse as you approach junior high. I transferred to a public school for junior high (7th and 8th grade). Junior high was the absolute worst time for me, kids are no longer innocent and curious, they begin to take on a personality like their parents or whoever has the biggest influence on them and they have no sense of compassion yet. I was teased, left out, isolated and ignored by most kids that I didn’t know. I still had the group of friends I grew up with that knew about my condition and a few new ones that I had made who really didn’t care about my skin. I actually like gym class, it was the locker room and “dressing out” that was hard. Changing clothes, being stared at and hearing people say “I wonder if he’s going to take a shower, I’m not using that one if he does”. I never showered after gym class because I never let myself overheat and I didn’t to expose my self to further ridicule. The one time I wet my head/hair down because I was getting too hot students instantly noticed my hair was wet in between the next class and the whole buzz around the school was did I take a shower and whether or not anybody was able to see me naked. Things got better after getting into high school, most kids mature and most of the teasing stopped. There was still the same few who teased and teated me the worst in junior high who continued to do it all through high school. To this day I still remember their names and faces, fortunately I have never seen them since graduating.

  • Mars Girl

    This entry actually triggered my own memories of middle and high school bullying… and I dont have ichthyosis. The thing is, kids at this age are horrible to each other. ESPECIALLY when you’re different. My differences were a lot less physical and more personality, but I got picked on pretty horribly too. And I’ve experienced teachers who acted deaf and blind to what was happening to me. I would never go back to those years in my life. Ever. And my experiences are also part of the reason why I do not want to have kids. If I did have kids, I would home school them. I have a lot of sore feelings about the public school system and their complete lack of empathy for bullies. This is not something the kids should work out among themselves. Adults do need to step in and put a stop to it.

  • Pauline

    Oh Hunter, I can’t believe that people did these things to you. It is awful and I am so sorry you had to experience and suffer for it. I was very lucky not to have this kind of treatment at school, as I was sent to disabled schools. I mean some of the kids called me names but they were more endearing, as we were friends. Everyone had nicknames for each other in a disabled school, so I saw it as ok. I did get some kids avoiding me and not going near me for fear of catching it. Also the nursing staff always warned the kids to keep their distance from me so they didn’t knock my skin. I was always infected pretty badly and in a wheelchair most of the time.

    years later when I was a teenager I begged the teachers to allow me to go to ‘normal’ school, but they would never let me like the other disabled kids. They said I would get knocked, and teased and hurt. I guess they were right after reading all of this. When they did eventually trial me at a normal Catholic all girls’ school run by Nuns, they couldn’t handle my skin and asked me to leave by the end of the first term.

    I think the teasing in some ways might make people stronger in adulthood, and maybe the constant protection and isolation stopped me from developing ‘a tough skin’. I don’t know, I guess this is another one of those debatable topics.

    Take care Hunter, and thanks for sharing, reliving these experiences must have been difficult for you. Good for you. xxx

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