Our Life is…

I write one of these letters for K’s new teacher every year so they know what they are getting into and then I pray they don’t run for the hills! 😉 I try to be as open and honest as I can be about her strengths and weaknesses so there will be limited surprises as we move through the school year. 

Hi! My name is K! 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 a little slower than my friends and I get tired easily if we are walking a lot 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. I look like a healthy kid most days, but my body has to work much harder than others to keep me functioning in basic ways. If I get very run down or tired, I may need to rest in the nurse’s office or have my glucose checked. Nurse H 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 have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I am taking a new medication that helps me feel hungry and learn to eat more appropriately and my mom is not sure how this will affect me at school. I will have some emergency snacks in the clinic, but hopefully I will eat something at breakfast and lunch and feel okay otherwise. I also need Nurse H to check my glucose every day before lunch 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. If my g-button comes out, I need to see the nurse immediately!

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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. I also am very light sensitive at times, so I may not tolerate being outdoors then.

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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. There will be days when I need to use oxygen at school because my oxygen levels are not where they need to be on their own, either due to the heat or illnesses. Nurse H will monitor me and get me set up if it is needed.

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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 intestines don’t work quite right and I have to take medicines to help them function, because of this, sometimes I have small bathroom accidents. Nurse H 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! If I have an emergency, the code word I use is “PLATYPI”.

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I get sick easier than most of my friends and illnesses hit me harder and take me longer to recover from (sometimes sending me to the hospital) so it is important that my friends remember to wash their hands often and cover their coughs and sneezes.

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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), I cannot do recess or outdoor activities in PE and I will need a quiet indoor activity while my class is outside. During the hottest part of the year, there is a good chance I will need to sit out of PE even when we are doing indoor activities because the heat causes my oxygen levels to drop. 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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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, so we will trial it to see if it is helpful in the classroom setting.

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I have sensory issues and some sounds, smells, tastes, sensations, sights, and especially  textures that do not bother people can be extremely offensive to me. If I resist touching something, do not try to persuade me because I may vomit. I am very smart about managing my triggers and will avoid them as much as I can, but it is important for you to know why I may be so resistant to “normal” stimuli so you don’t think I am just being difficult.

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I am an excellent reader. I learn very well from written word, especially because I don’t always hear verbal words or instructions as well. It helps me a lot when my reading skills are used in class to help me keep up with what is happening in the class. 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 stay on task.

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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’m a little different than my classmates and while I am VERY social and intelligent, I sometimes have trouble connecting with peers on their level and seem to connect better with adults. I don’t pick up on subtle social cues and have some things in common with people who have high-functioning autism, but this is also because of my underlying disease. I might need a little help interpreting and navigating certain situations and judging what is appropriate and inappropriate because my mom says that I was born without a filter! I am extremely honest, funny, joyful, trusting, and friendly because of this, but I am also sometimes too honest or can’t resist oversharing.

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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! My mom keeps in close contact with the nurse on a daily basis and lets her know what things are likely to be an issue and how I am functioning overall. I think EVERY day is the best day ever and I’m so excited to be in third grade this year.  I love learning and I know I will have lots of fun in your class! My mom is always available if you have concerns or questions, big or small!

Your new student,

K