I was struggling with how to present information about Nolan's myriad issues without completely
Here is Nolan's "Letter to the Teacher" for this school year:
Hi! My name is Nolan. 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.
I love going to school and playing with new friends! I really love stories and painting, and I know I am going to have a great year!
****
I don’t hear very well, and both of my ears have a moderately-severe hearing loss. I wear two hearing aids to help me hear better – I compensate for my hearing loss very well, but the presence of background noise makes hearing more difficult. Because of this, I also use an FM System in noisy situations: this system brings your voice directly to my ears. I hear better when people face me, and I do not hear as well when people are behind me or speaking from a large distance.
****
I wear glasses to help me see clearly. Both eyes have significant astigmatism, and my right eye is also nearsighted. I have amblyopia in my right eye, and cannot see very well out of that eye, even with glasses. Because of this, I sometimes have difficulties with depth perception (and may bump into things or appear “clumsy.” My eye doctor says I might need to start wearing an eye patch over my stronger eye – if that happens, I will have some difficulty seeing while patched. We are hopeful that the glasses will be enough to help me see!
****
Sometimes, I will get a bit “droopy” and complain that I am “out of energy” or “tired.” Sometimes I will complain that my legs hurt or that my tummy is sick. My mom and dad are not sure why I do this – usually a snack or some gentle encouragement will get me back into the swing of things. I usually do this in the afternoon, so hopefully this will not happen during my school day this year.
****
I don’t breathe very well at night because I have a floppy airway (laryngomalacia) which causes sleep apnea. Because of this, I use a C-Pap machine at night. The doctors are not sure if this will work, as it causes me to become very congested and sometimes causes my lungs to sound very congested. I am not sick, but I will frequently have a congested nose and rattling lungs. Sometimes I wake up very cranky in the morning, because I have had a very bad night’s sleep. We are currently looking into some other options to find a way to treat my breathing problems, but this is expected to remain a problem for the foreseeable future.
****
My stomach doesn’t work quite right. I have very severe acid reflux. The acid reflux is the reason I have had four sets of ear tubes, chronic congestion, and why I developed the floppy airway. I generally do not vomit, but I will occasionally gag and choke on reflux. When this happens, I often cough and my eyes turn red and water. These episodes are brief and I will be fine as soon as the reflux clears. I take very high doses of proton pump inhibitor medication, in addition to an acid blocker, and none of these medications are able to control the reflux.
I also have delayed gastric emptying, which varies in intensity. This means my stomach does not digest food properly, and empties too slow. On very bad days, my stomach hurts badly and I will not eat any food. Sometimes I will vomit the food I have eaten the day before, completely undigested. Most of the time, however, my stomach works well enough and I eat just fine. If I complain about severe stomach pain, this is the cause of the trouble!
****
I'm so excited to be in school this year and I know I will have lots of fun in your class!
Your new student,
Nolan
8 comments:
Leah, this is AWESOME! If I was a teacher, I would not freak out about this....rather, I would want to thank you personally for explaining the issues that you face.
Good job, Mom! And have a great time in school, Nolan!
Praise God for brave litte ones and parents that are advocates for their children! So wonderful!!
That's an AWESOME letter. I should think anyone reading it would feel compassion for Nolan.
It's good to emphasize the part that HE'S NOT SICK. A lot of his symptoms (the rattly chest, coughing, or vomiting) could alarm other adults, thinking he's contagious when he's not.
Glad he had such a fun birthday - I can't believe he's FOUR!!!
Julie
Yay! Glad it helped you. I think it is a lot easier for teachers to digest when written from a less technical point of view and this format also helps them see the direct cause/effect for the different issues, since 2 kids with the same medical issues can have slightly differing presenatons.
I really wanted to make sure she understood that while he appears sick on a very frequent basis, that he isn't ill from anything contagious. Poor kiddo would miss half the school year if we kept him out for congestion and bronchitis! Kyla, I love this method because it presents information in a less technical form than the reports included with the IEP. You are awesome!
I really like it. I'd like to suggest ending each paragraph with what the teacher could do to make their mutual lives easier. For example, the hearing paragraph. "So if I don't seem to be listening, come get my attention and make sure I can see your face so we can talk better..." or for the Cpap paragraph where he wakes up grumpy - how long does this last and does he get more fatigued on those days? Does he snap out of it on his own, etc. Know what I mean? Highlighting that the solutions/coping are really easy...
Oh, that would have been a good idea! I met with the teacher today - she is WONDERFUL. Fortunately, I was there in person with Nolan, so she could see him and he actually did have one of his "out of energy" meltdowns (not a bad one, but still). We told her that we sort of push him to keep going, and so she was able to see a lot of the coping mechanisms. Next year, hopefully I'll have a shorter list of issues and I'll put a "how to deal with it" component in!
Its so you Leah....writing in all details and with so much clarity.I am sure the teacher must have melted as I am. Hope he has a fun year !
Post a Comment