Photos: First Days of School for Kindergarten, 1st and 2nd Grades
On the 9th Day of Christmas Phoebe wants you to know...going to school can be challenging. Enrolling your child in school is supposed to be an exciting time for any parent. Your little baby is finally old enough to enter school, ride the school bus, go on field trips, participate in class parties and experience all the milestones that come with being in elementary school. But living with rare undiagnosed diseases makes going to school, participating in these activities and experiencing this excitement challenging. For Phoebe, navigating public school has proven to difficult to say the least. When she began her journey in our school district we knew she was going to need certain services. For transportation Phoebe needs to ride a certain school bus that has air conditioning and heating that helps her regulate her body temperature. Having her take this bus also helps with her breathing during the hot/humid and really cold/frigid days throughout the school year. During Phoebe's school day she has temperature guidelines for when she can go outside that also help assist with these things. If the temperature is above or below a set temperature she is able to stay within the school and rest. Other modifications that Phoebe gets while being in school have included an abbreviated length of day, the ability to use the elevator when she is having pain/difficulty walking, having assistance walking the long hallways, ensuring bathrooms as close by with easy access, not participating in gym and certain recess activities due to her muscle and lung issues, and having built in breaks throughout the day. We also have accommodations she needs in place to be able to attend field trips with her class. With having services like these it could be easy to ask "What challenges are you facing with school?". The first answer is we do not have a diagnosis. Therefore the school board fights and argues about these services and how we receive them. Often times it comes across as a because you do not have a name of a disease that can researched to prove what you are saying, why should we provide these for you. The countless letters from doctors, recommendations from doctors, conversations with doctors, two page list of symptoms, and copies of pertinent medical history have not been enough to ease the challenges we continue to face. The second answer is Phoebe so desperately wants to fit in with her classmates and be able to do things that they do that she always seems happy in school. Because being in school with her classmates makes her feel (sometimes) that she is one of them. The excitement of being able to attend school and participate in the things she is able to is why Phoebe pushes herself in school. In her mind, if she pushes herself she will be able to do more. No matter if she is hurting or not feeling well. This becomes a challenge because she doesn't tell her teachers when she isn't feeling well or when she is pain. She is scared that she will miss something or have an activity taken away from her. She suffers silently. But by suffering silently she is being viewed as a child who can handle all the events and activities of the day. And things with her health and body can be easily missed this way. While facing these challenges I cannot help but think to the years to come. If we are having difficulty now, what will we face in the much larger middle school or massive high school? With only being in second grade middle school is a long way off. But from what these challenges have taught me, it is better to begin thinking about these things now than waiting and scrambling when she is in fifth grade.
Photos: First Days of School for Kindergarten, 1st and 2nd Grades
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AuthorThe true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you. Archives
June 2021
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