Monday, September 3, 2018

A Letter to all Teachers/Professors | Una Carta para Todos los Profesores

Hey Everyone,
Since school is about to start or has started for many students I was thinking about how much school was a struggle at times for me, whether it was Middle School, High School or College. I wanted to write a letter to express how us kids/teens/young adults may struggle to just even sit in the classroom. 

To all the teachers and Professors this school year:
     Many of you may have no idea what Juvenile Arthritis is. Many of you may not even believe kids can have arthritis. Many of you might not even believe if a child or parent were to tell you. At first it may be hard to understand or even grasp the idea of a child having JA. Some teachers and professors might come like little angels to our lives and be extremely understanding and go out of their way to make sure we are comfortable and not struggling in the classroom. But that isn't the case all the time.

    To Elementary School Teachers: These kids have no idea of what they're going through. A diagnosis such as JA, they may not grasp everything they need to know. Kids just want to be kids. You will hear from the parents more at this age. The parents will give you information if you have never had a child with JA before. They will help you understand how their child needs help. Please have an enormous caring heart. These kids can feel extreme pain you may never think a child can feel. They may want to color and play with their little friends, but their pain might not allow them to run around or even grab a toy, crayon or pencil. Try your best to not have the kids feel like they're different than the rest. Help them feel involved in the class with things they might not be able to do. Show them that having limitations does not necessarily have to stop you from doing things. Please, as a child who grew up with JA, keep an eye for any other kids trying to bully them because they're different and can't do much. Or because they walk funny or have to wear braces or use things to help them get around. Please keep an eye for any kid making fun of them. They already feel different than everyone else having to take medication every day, get medication injected and just being limited to doing things. All I ask for is to help kids feel welcomed and like they aren't different then the rest of the classroom. 
    To Middle School Teachers: Kids at this age can communicate with you easier, but it may be a little difficult for them to open up about their illness. Middle School is a big change. A bigger school, new kids, and complete new faces for teachers and staff. If the child was diagnosed at a younger age, they will know they may have limitations and can open up to you about it. But if its a new students starting a brand new school and just diagnosed like I was (3 months into 6th grade), it can be a bit difficult. Trying to understand a condition you didn't have before that you rarely understand is difficult. Even though they are older and can communicate, being recently diagnosed may cause a child to be shy about it and not want to talk about it or even act like they weren't diagnosed with anything. Please be a helping hand in every aspect. They may need help getting up from their chair, trying to grab their book bag, or even taking notes or taking tests. Please be understanding that it may not be easy for that child to open up about what they are exactly feeling. Please try to communicate as much as you can with the parents. I know you can be busy with many other things, but try your best to understand how much you can help your student out. Even if its trying to get a scribe for your student. I had one of these for most of 6th grade and it was immensely helpful. Please allow the student to leave class a little earlier to be able to get to the next class on time and without all the other students rushing in the hallways to get to class. That way the student doesn't get pushed around or rushed in the hallway by others who do not understand what's going on. A major thing I ask is that bullying happens a lot at this age sadly. Please keep any eye on them and make sure they aren't pushed around in the hallways, made fun of because they need help getting places, or they have a scribe, or have to wear braces or use crutches, etc. I was in that position where I had kids make fun of me and it was the most uncomfortable situation ever. New school, new kids, a new diagnosis of an illness I was still too young to fully understand what it was and to add kids making fun of you on top of all that can drive a child to shut down and be physically and emotionally distressed. Be open with your students and show them you're there for them every single day. Let them see they can trust you to talk about things they are feeling and at least have someone to talk to about besides their parents. 
    To High School Teachers: They can have a better understanding about their illness and their limitations. High School is a very crucial time for teenagers. They slowly start preparing for their college careers and understand how important this is for us. The one thing is that once exams start coming and essays and lab reports are due, please if a student is struggling not because they're lazy, but because they're constantly at doctor's appointments please be considerate about this. We can be at doctor's appointments for hours for multiple times a month or even during a week. I understand they have to be responsible, but sometimes the most responsible student had their chemo medication the day before or had their infusion appointment. These type of treatments really exhaust us and may end up with side affects that keep us up at night or just sick throughout the day. Random doctor appointments will come up and sometimes we may be out for a couple of days. Please be considerate and allow us to take work home or make up any work we miss. Please have an open about school work and emailing back and forth with a student that's missing school because of a legitimate reason. All we want to do is make sure we are not falling behind in school because we know its something we cannot control, but please help us make that possible. Gym period could be one of the toughest class to attend. Of course they will have a medical excuse, but even just sitting during gym period is hard for a student to deal with. They have to sit through an entire period of seeing other kids their age running around playing and being active when at the moment they cannot do those things. It is frustrating seeing your friends having fun and being active while you're trying to figure out when that will be you again. Of course, bullying still occurs at this age so please be aware of anyone treating the student differently. They may be able to defend themselves to an extent, but if they get pushed around when they can't even get up without struggling they won't be able to help themselves out too much. Depression hit me hard at this age so please be aware of this as well. Again, be open with your students and show them they can count on you whenever they need help with anything even if its just to have a friend to talk to because they will have days where they feel alone even though they can have tons of friends. We feel alone because we may not know or have people around our age that understand what its like to live with a chronic illness like Juvenile Arthritis. 
    To College Professors: This is the time where we have major issues. Not once have I met someone with Juvenile Arthritis or any other chronic illness that has not had 1 issue with a professor. I know colleges have specific rules about absences and as a professor you may feel a certain type of way about absences as well and may have your own rule about it on your syllabus. I know I may not make a difference here, but please be understanding about students will chronic illnesses! Yes, its our responsibility to come up to you the first day of class to let you know our situation, but many of you don't seem to care or bother to understand what its like. We aren't asking you to understand 100%, but if we tell you we will be out of class believe us, we do have legitimate reasons. 3 absences for us is NOTHING and the fact we can be in danger of failing a class if we pass that amount is honestly ridiculous. Yes, we may have help from our college's accessibility office, but sometimes that's not even enough for you to accept absences. Please we all just ask to be understanding about our situation when we say we have to be out of class for a day or a couple of days. If it were up to us, we wouldn't want to miss out on so much school time, but our reality is that we will no matter how old we are. I failed about 3 classes when I was in college due to just being absent. I had doctors notes, letters from my accessibility office, gave notice in advance that I would be out and I STILL FAILED! I passed all my exams, made up all the classwork I needed to in order to stay up to date with the lectures, had good grades on all papers, but just because I had to be absent for more than the days on the syllabus I FAILED! Do you really think that's fair? I don't think I should be penalized that badly when I can't walk at all and make it to school when I can't even get out of my own bed. Please, I'm not asking to understand fully, but take the time to listen to your students and about their struggles they face every single day to make it to YOUR class. To those professors who are extremely understandable, I thank you from the bottom of my heart. You made going to school so much easier and I knew that my chronic illness and disability would not interfere with my grades. You made my life easier in general and you don't understand how grateful I am for that. I wish we had more of these amazing professors to help us when we have days where we won't make it to class. 

Overall, to all the teachers and professors of any grade, I just want you all to be a little more cautious about the situations many kids go through. Whether they were diagnosed at a very young age, or have been diagnosed recently, please be aware of some of the things we go through. I could have gone on and on about all the other things we deal with in a classroom, but I would be writing forever. We are already going through a rough time trying to understand an illness we might not fully understand yet or trying to understand that we will be limited to doing many things. We are already vulnerable knowing we are "different" and if you can make life a little bit easier for us no matter what you do, we will really be grateful for what you did. The parents will probably love you forever and show their gratitude all the time, but its because you're helping their baby feel like they can have a "normal" life despite of their diagnosis. I am not expecting to make a huge difference here, but its an idea of how students are affected by a chronic illness and how school can be one of the hardest obstacles we have to go through. I am not a doctor either to tell you what we go through exactly, but I was once that  student who lives with JRA (Juvenile Rheumatoid Arthritis) through all of that with many other issues.

If you have any questions, please feel free to message me on here if not email me at fightingwithpaula@gmail.com 

-Paula Valencia 
   *Stronger than Arthritis* 
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Hola Todos,
Quise escribir una carta para todos los profesores de cada grado porque estamos en la temporada del regreso al colegio. Esta publicación es para los profesores de Primaria, Secundaria, y la Universidad. Quería escribir una carta explicando el esfuerzo tan grande que nosotros como estudiantes nos toca hacer viviendo con una enfermedad crónica.

Para todos los profesores de cada grado:
   Muchos de ustedes no saben que es Artritis Juvenil. Muchos de ustedes no van a creer que un niño puede sufrir de artritis. Puede ser que cuando un padre te hable sobre esta condición, no vas a poder imaginarte que un niño sufra de una enfermedad tan fuerte a esa edad y vas a pensar del dolor que pueden sentir y no lo vas a creer. Hay unos profesores que llegan como angelitos a nuestra vidas que hacen lo imposible para que nosotros como estudiantes podamos hacer todo y no sentirnos diferentes. Pero, eso no es el cuento todo el tiempo.

   Para los profesores de Primaria: Los niños a esta edad no entienden que es una enfermedad crónica y menos van a entender que es vivir con una enfermedad. Con un diagnostico de Artritis Juvenil realmente ellos no van a entender que significa eso. En esta edad, los padres son los que van hablar mucho contigo para explicarte que es AJ. Ellos te ayudaran entender que es lo que tienes que hacer para ayudar a su hijo. De pronto te demoraras un poco para entender completamente que es AJ y porque un niño tan pequeño tiene que sentir todo ese dolor, pero por eso necesitan que te enfoques en la educación del niño y que no se vaya a esforzarse mucho. Ellos no van a entender porque van a ver días que sienten mas dolor que otros y no van a entender que son "diferentes" a los otros niños. Ellos van a querer jugar y hacer todo lo que hacen los otros estudiantes, pero realmente es que van a tener dificultad hacer muchas cosas como caminar, coger un lápiz o hasta parrase de su asiento. Traten de que el niño no se sienta diferente que los demás. Si lo son pero lo peor es cuando se sienten diferentes. Demuestra que pueden contar con tu ayuda a cualquier hora escolar y que no tienen ninguna razón de parar de hacer algo por sus limitaciones. Demuestra que ellos pueden hacer todo lo que sus amigos están haciendo a pesar de que lo hagan un poco mas lento. Por favor estes atento a todo lo que hacen los otros estudiantes con el niño con la enfermedad crónica. Los demás pueden estar riéndose del ellos o preguntando porque caminan diferente o porque tienen que usar muletas o una silla de rueda. Le pueden explicar a los niños la razón que el estudiante tiene que usar eso en una forma que entiendan. Cuando los niños tiene que tomar sus medicamentos y se dan cuenta que los otros amigos no tienen que tomar medicamentos o inyectarse el medicamento, ellos con eso se sienten diferente que los demás. Lo único que pido es que por favor ayuden al niño sentirse cómodo y como si fuera un niño "normal". A pesar de que les toque hacer las cosas un poco diferente, ayúdenles  a sentirse como el resto de los estudiantes.  
Para los profesores de Secundaria: Los niños en esta edad pueden comunicasen un poco mas, pero se les puede hacer un poco difícil porque muchas veces les da pena hablar sobre la enfermedad que tienen. Ellos ya saben que tienen limitaciones y que no se pueden esforzar mucho. Yo solo llevaba 3 meses en grado 6 cuando me diagnosticaron y no fue lo mas fácil de entender. Estaba comenzando un colegio nuevo y no conocía a nadie. Para mi fue muy difícil porque no entendía porque estaba enferma. Yo no hablaba de mi enfermedad porque me daba pena hablar sobre ella. Es una edad muy difícil de entender que uno va seguir enfermo por mucho tiempo y que es una enfermedad que es dolorosa. A esa edad uno no se quiere preocupar de dolores, medicamentos, o de las cosas que no puedes hacer.  Por favor ayuden en todo lo que puedan. Si necesitan ayuda pararse de la sillas, si necesitan ayuda ponerse la maleta o hasta cuando necesitan de tu ayuda para escribir las notas de la clase por favor hazlo. Entiendan que el estudiante de pronto no se va sentirse cómodo de hablar de la ayuda que necesitan o de su enfermedad. Traten lo mas que puedan de comunicarse con los padres por si ellos saben en que forma los pueden ayudar. Si ves que necesiten ayuda con escribir, busquen que la escuela les ayude con un escriba (yo tuve un escriba todo el grado 6). Esto fue una de las ayudas mas grande que necesite y que me dejo hacer todo en clase. También me dejaban salir de clase antes que sonara la campana para poder llegar a mi otra clase con tiempo sin tener que caminar rápido para no llegar tarde o caminar con todo los estudiantes con mis muletas. El bullying todavía ocurre en estos grados. Por favor no dejen que se burlen de ellos o que les digan cosas feas por la forma que tienen que hacer sus cosas en clase. Cuando estén un poco mas grandes van a entender su enfermedad mas. Si tienen que entregar un proyecto o un examen, por favor entiendan que de pronto tuvieron su cita medica donde les dieron una infusión con su medicamento o tomaron su quimioterapia. No es fácil cuando tenemos tratamientos fuertes, pero la realidad es que vamos a sentir efectos secundarios. También podemos estar en muchas citas medicas en una semana o hasta en un mismo día. Esto no es fácil para nosotros porque cuando querremos estar estudiando no lo podemos hacer. Entendemos que debemos ser responsables para no perder mucho estudio o faltar días cuando tenemos presentaciones o exámenes, pero muchas veces nos va tocar faltar. Por favor, si pedimos mas tareas o trabajos que podemos hacer en casa para no quedarnos atrás del resto del salon danos lo que necesitemos para no perder el año. La clase mas difícil siempre sera gimnasia. Nos toca ver nuestros amigos jugando y ser activos, pero la realidad de nosotros es que nunca sabremos cuando podamos hacer todo lo que ellos hacen. Esto nos puede afectar mucho y causar depresión porque empezamos a pensar cuando tendremos una vida "normal" como el resto de los alumnos. Yo sufrí de una depression a esta edad y sigo sufriendo de eso. Ser niño es una época que debemos disfrutar sin preocupaciones y cuando no lo podemos hacer es difícil. Si ven que un niño esta mostrando señales de depresión, por favor hablen con los padres y hablen con ellos. En ese momento nos sentimos muy solos, especialmente si no conocemos a nadie que tenga la misma enfermedad. Hablen con ellos y hablen con los padres para que estén atentes.
Para los profesores de la Universidad: En esta etapa tuve muchos problemas. No he conocido a una persona que no ha tenido problemas con la universidad con nuestras ayudas especiales por nuestra incapacidad. Entiendo que las universidades tienen una regla especifica sobre cuantos días podemos estar fuera de clase, pero cuando son 3, nunca será suficiente. Se que no voy hacer una diferencia muy grande hablar de esto, pero si pido que sean un poco mas razonables. Cuando uno tiene una enfermedad crónica, nunca sabemos cuando vamos a faltar ni sabemos cuantos días vamos a faltar. Si faltamos mas días de lo que "podemos" perdemos la clase completamente. No creo que porque tenemos una enfermedad crónica nos deben castigar. NO ES JUSTO! No es mi culpa si un día no me puedo levantar de mi cama o caminar. Tampoco es mi culpa que no puedo llegar a clase porque tengo mucha inflamación en mis articulaciones donde no me puedo vestir o hacer cosas sin la ayuda de otra persona. Permisos de faltar 3 clase nunca sera suficiente. No les estoy diciendo que nos tienen que entender a 100%, pero si pueden pensar en todo lo que nos tocar sufrir para llegar a clase. Hay unos profesores que llegan como angelitos a nuestras vidas. Hay unos que se preocupan por uno y hasta nos escriben para preguntar como seguimos. Hay unos que hacen lo que sea para que nuestras ausencias no afecten nuestros grados. Le doy gracias a todos los profesores que han sido super especial conmigo porque nunca entenderán cuanto me hicieron la vida un poco mas fácil. Les agradezco todo los mensajes y la ayuda que me dieron para poder pasar mi semestre. En realidad, necesitamos mas profesores como estos que se preocupan de uno mas de lo que deben hacer.  

En fin, para todos los profesores de cualquier grado, solo les quiero decir que sean un poco precavidos sobre las enfermedades crónicas que pueden afectarnos desde muy pequeños. No importa la edad que fueron diagnosticados, pero si importa a que tiempo fueron diagnosticados cuando entran el primero día a tu clase. Hay unos que pueden entender todo sobre su enfermedad y otros que todavía no han podido entender la enfermedad que tienen. Vamos a tener muchos limites que de pronto no nos gusten o no sabemos la extremidad de nuestra condición. Vamos estar muy vulnerable que somos "diferentes" y si pueden ayudarnos tener una vida un poco mas "normal" seria una ayuda muy grande. Los padres de los niños con estas condiciones siempre van estar muy agradecidos si los pueden colaborar que sus hijos se sientan bien mientras estén estudiando. No es fácil tener una enfermedad donde te sientas solo porque no conoces a nadie con esa enfermedad. No soy doctora para decirles que tienen o pueden hacer, pero si era una estudiante con una enfermedad crónica que me toco pasar por muchos obstáculos. Solo quiero que ninguna persona tenga que pasar por lo que he pasado con mi enfermedad cuando estén estudiando.


Si tienen cualquier pregunta o quieren saber mas, por favor me pueden escribir en mis comentarios o sino, me pueden mandar un correo electrónico a fightingwithpaula@gmail.com


-Paula Valencia

   *Mas Fuerte que el Artritis*

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