Hi! My name is KayTar! I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.
I am an excellent reader. I’m almost done reading the Harry Potter series and I’ve read it all by myself! I learn very well from written word, especially because I don't always hear verbal words or instructions as well. When I watch TV at home, I like the captions to be on, so I can follow what is happening. I think it would help me a lot if my reading skills were used in class to help me keep up with what is happening in our room! Sometimes I get distracted or forget what I am supposed to be doing, so my other teachers have provided written instructions for classroom tasks and schedules and it helps me a lot.
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I can't hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don't hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy. This is another reason it helps me to have written instructions. My audiologist wants me to use an FM system in the classroom this year.
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I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.
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I am a little slower than my friends and I get tired easily if we are walking long distances so I might need extra help. I use a wheelchair for long distances, so if we go on a field trip I will need it. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I might have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens. The muscles in my hands get fatigued and weaken easily, so I have special modifications in this area. My doctors think I have a disease that causes me to be weaker than my friends and causes me to run out energy much quicker than they do, called mitochondrial disease. It may seem like I am being lazy at times, but my body just cannot always keep up. Even when I seem to be keeping up on the outside, sometimes my body is slowing down on the inside because it can’t keep up with all of the energy demands, so my mom and dad try to make sure I don’t burn too much energy on “outside” tasks so my body can use more energy for “inside” tasks and keep me feeling better. If I get very run down or tired, I may need to rest in the nurse's office or have my glucose checked. [The nurse] is very familiar with my medical needs and can help you make decisions about how best to care for me at school. I get tired much quicker when I'm even a little bit sick and there may be times I need to sit out of PE during the year. If I ever complain of being dizzy or wobbly or say my legs aren't working, I need to see the nurse right away.
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I am very sensitive to heat and cannot be outside for very long in the heat of the summer months. While it is so hot out (above 90 degrees), it is best if I do not do recess or outdoor activities in PE and I will need a quiet indoor activity while my class is outside. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. It also makes my stomach have a harder time working properly and can make me feel badly in other ways, too. Sometimes if I play too hard even when the temperature is nice, it might make my stomach feel sick. It doesn’t always happen immediately, but my tummy gets very slow when it is too tired and it makes me feel bad.
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Some days throughout the year, I am very light sensitive and can't bear to be out in the sunlight. I have magic lenses in my glasses to help, but some days they don't help enough. If my friends are going outside and the sunlight is bothering me a lot, I might need to go sit in the nurse's office or with another class while my friends play outside. Other days it doesn't bother me as much and I enjoy playing outside with my friends very much!
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I get migraine headaches and if I ever complain of head or eye pains, or changes to my vision, send me to the nurse immediately for medication, even if it doesn't seem to be keeping me from participating. It is important I get my medicine at the beginning, so they do not get much worse.
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I have asthma and if you notice me coughing a lot or coughing so hard that I gag/vomit, I need to be given 4 puffs from my Albuterol inhaler with my yellow spacer mask. I have some other breathing problems and I wear oxygen at nighttime.
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I don't like to eat much, so at breakfast or lunch I might choose not to eat. My mom will send something that I like every day, just in case. The textures of some foods might make me gag, either by sight or touch. If it gets too close to me I might push it away from me to protect myself. Sometimes just thinking about these things might make me feel sick. I have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I also need [the nurse] to check my glucose to be sure my body is getting enough of what it needs. There are times when my tummy just doesn't work right and I vomit even when I'm not sick. [The nurse] knows how to help me and will call my mom if she thinks I may need to go home, but many times I finish the school day even if my tummy is acting funny. If I say I feel too full or like I might throw up, send me to the nurse quickly and she can help me feel better by venting my tummy. I also need to keep my water with me at my desk so I can take small sips and get enough fluids during the day to help prevent headaches and other symptoms from getting worse.
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My lips and tongue have gotten VERY big a few times and my doctors aren't sure why this happens, if you notice my lips swelling, or if I say, "My tongue hurts." it means I'm having an allergic reaction. Take me to [the nurse] immediately. I need to have 2 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.
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Like the rest of my GI tract, my colon doesn't work quite right and I have to take medicines to help it out, because of this, sometimes I have small bathroom accidents. [the nurse] will have supplies to handle this if it is an issue. When I go see her before lunch, she will remind me to try to use the bathroom to help prevent accidents. Rarely, I may need to wear pull-ups when I am having more trouble with this, but I don’t want my friends to know! I am on new medications that are helping this problem more, so I hope we won’t have to worry about it much this year!
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I know it sounds like I have a lot of things going on, but most school days go really well for me! I think EVERY day is the best day ever and I'm so excited to be in second grade this year. I love learning and I know I will have lots of fun in your class!
Your new student,
KayTar
You can find the letters for previous years here: 2011, 2010, 2009, 2008.
[As an aside, I find it REALLY strange to call the nurse "the nurse" because she is SOOO much more than that to us these days!]
5 comments:
My husband has mitochondrial disease too. He has a hard time when he has to exert too much energy because his body just won't let him.
KayTar, you are one awesome girl! I hope this school year goes fantastic for you and that you have a BLAST!
As a former teacher (had to leave after 17 years), and someone w/many serious health issues. I love this letter and wish more parents would share these things. I had a student that had epilepsy and it wasn't until he had a seizure in front of me that anyone @ the school knew. The mom didn't want us to know for fear her child would be treated differently. In a way I can see what she was saying, but it was scary and could have been dangerous. Where’s her Epi Pen kept and how long do you have to get it to her? I had a student w/ a severe peanut allergy. Until he was in 4th grade the Epi Pen was kept in the Office (we had a Health Aide; no medical experience AT ALL) always and an RN shared btw three buildings. Best case, I could get the Epi Pen to this child in seven minutes. I would have to: determine he needed it, call the office and hope that they are not gossiping and answer the phone by the 10th ring, tell her what I need, wait for someone to unlock the cabinet and run it up to me (no offense but at 250+ pounds one doesn’t run fast) while someone else calls 911! That is when all works out. I refused the student unless the needed medication was kept in my classroom. The Union fought it, and I won. The mother didn't realize that while he was in grades K-3 this was how it worked. Have you thought of giving the teacher a copy of "The Spoon Theory" with a note that says, "Insert any serious and chronic health issue that KayTar has for Lupus!" That may also help the teacher understand. Because sometimes, like me and many other's with chronic health issues we may look okay on the outside, but might be having one of our bad days & nobody would ever know. Just a thought! Again, a great letter. I know her teacher is going to love her. I can already think of 100 ways I can make a classroom awesome for KayTar. One last thing; just remember that a good teacher never lectures from one point in the room. It's important for us to move around the room so that we can pat a child on the back, redirect, give a cue to a child w/attention issues w/out anyone knowing, allow all children to feel like they are close to the teacher, etc.! If you ever need something, or want some sites where you can find grade level reading material for KayTar let me know. Also, I have lots of material here @ home that I could copy and send her (and BubTar) well above their grade level if they needed/wanted it (or the book names)! Just let me know. I had a child in kindergarten who came to visit every day in 1-4th grades (had her again in 5th grade) and her spelling wasn't hard enough in second grade. Mom and student talked to the teacher 1,000,000 times and nothing. So, she came to me for spelling (secretively; on the side~her Mom knew of course). I would give her 4th grade spelling assignments, pre/posttests during my free time just because she wanted the chance to learn at her level. Crazy! Have a great year! Take care! Jodi
have a great year.
I'm glad you take the time to write a letter to KayTar's teacher explaining her health issues. I had a few mean teachers growing up, and I'm sure there are some out there, so it's good that KayTar attends a great school and has school staff to look after her.
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