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DD has a heart defect. Cardiologist says treat her like a normal kid. But treating her like a normal kid is nearly impossible at school. I have to make a big 'ol stink and fill out more paperwork just for her to have water at her desk/table and ensure that all teachers are notified of her heart defect. A special meeting called b/c I want to discuss it face to face with the teachers (not just my writing on some random form). I *have* to make a big deal about it otherwise, she ends up dehydrated. When dehydrated she has symptoms. She can run and jump and kick and play like any other 5 year old, but essentially her heart is a ticking time bomb. She could need open heart surgery today or 10 years from now. But it is a condition that will get worse with age. Its not a question of "if" she'll have to have open heart surgery, but when she'll have it done. Its so hard to get it through teacher's heads that this IS NOT an innocent mummer caused by a hole in her heart. God, I wish that's what it was. It'd be so much simpler to just ignore it as they usually close on their own with time and go away. Instead DD's heart gets weaker with each and every heartbeat until the time comes that she needs surgery.
I know I'm rambling, but seriously I just had a bad experience. Came the closest I've ever been to taking her to the hospital. She's fine now, but still going to get her in as soon as I talk to the school and see what documentation I need to get accommodations in the classroom. My trust was broken, and I'm not sure how to gain that trust back in the school, in teachers.
Proud Mommy To My Princess (5)
Watching over us -- August 2005, March 2010, October 2010, July 2011
We are blessed with our school system. Before Ava even started preschool, the school phsycologist, school nurse, therapists, etc... came to our house to go over her diagnosises. We had several meetings with the teachers, principal and everyone else involved at the school also. Even the kindergarten teachers have researched her disease and she's only 3!
That being said, Ava has Mitochondrial disease (which is also like a ticking time bomb), port and g-tube. I have the same fears you do about something happening. I remember showing up at the school unexpected and seeing Ava trying to crawl up stairs (like a baby would) to go down a small slide all by herself. My first instinct was to run to her and help her before she fell or pulled per tube out or........ But she managed it by herself and did it 2 more times. Everyone was thrilled and Ava was so proud of herself.
Things are going to happen and I can't be with her to protect her (even if I want to be) every second. I also have to let her be a child because her future isn't promised. I don't want the medical stuff to consume her life. kwim?
Ours isn't as pressing as yours at the moment but Danny has the severe allergy side that affects school. He is ANA allergic to tree nuts. Peanuts are fine but tree nuts make him stop breathing in seconds...if that...just from touching a surface that someone else touched after touching a nut. Thankfully his preschool has 4 (out of 23!!!) kids with peanut and/or tree nut allergies so they are 100% pn/tn free. Once he starts an actual school (rather than just preschool) I don't know what I will do about this. It terrifies me. I will tell people he is allergic to tree nuts and they have no CLUE what I am talking about! Anyway...I know this is a far more shallow level than open heart surgery but I can understand the frustration. The school system here isn't very organized unless you have a 504...then it is gov't mandated and they can be fined big time. If she doesn't have a 504 plan ask her cardiologist what you will need to do to get one. It is basically an agreement that the school system has to do anything that the doctors, parents, teachers, and principle agree is necessary. If there is not an agreement reached the case goes to a hearing where a judge orders what he feels is best. If the doctor says she needs x,y, and z or a,b or c could happen than he should accept that. If you don't have a 504 plan for her I would strongly suggest it. It makes it more than the school just saying they will do something. The school becomes legally bound to do that. Once they are legally bound teachers can be fired, principles fired, etc for not following the 504...even if nothing bad actually happens.