I just want to scream!!
I just got off the phone with the school nurse. She called to just give me a brief update. She is only at Bekah's school 1 day a week and Bekah is in kindergarten so Bekah is under her care maybe 3 hrs a week. I filled her in on some changes in Bekah's routine and carb to insulin ratio.
She then preceded to lecture me about how important it is for Bekah to be able to give her self shots by next fall so that I won't have to come to lunch to help her.
What if I worked full time and couldn't come to the school at lunch? And really does she think it's safe for a barely 7 year old to be dosing and giving herself insulin?
The next part almost sent me through the roof. She told me that she thought it was important that we get Bekah a 504 (ok now we're talking) so that if she is high or low she won't have to take the state standardized test. She added, "after all this is a life threatening condition".
A STANDARDIZED TEST!
She is worried about my daughter's ability to take a standardized test but not about her daily ability to receive insulin by someone who is trained.
The nurses in the hospital had to have a second nurse sign off on the amount before insulin could be given and I had to have hours upon hours of training on diabetes management to be able to bring my daughter home from the hospital.
I have no doubt that at some point Bekah will very skillfully be able to do all that is required to manage her own diabetes. She is growing up too fast as it is why should I force her to grow up any faster. Diabetes in and of itself has caused her to have to do some very uncomfortable things and I don't want to force her to do something she is not ready to do. I should not have to come to the school daily to help her. You can bet I will though. (Actually we are hoping to move into a different district that will play better with D or home school).
I am happy to fight for D and for other families that will come behind us so that the school will provide better care but not at the expense of my daughter. I don't want her to suffer because the school is concerned about their budget and their precious standardized test scores.
These are the kind of answers we have been getting from the school. It is so frustrating! What happened to really caring about the kids and their well-being?
I kept her home for the first couple of weeks after we got home from the hospital. I was tempted to keep her home for the rest of the year and just home school. She loves school though and D has taken away so much, I didn't want it to take that from her too. Her life is going to be difficult enough she doesn't need me taking away something that she loves so much or make her feel different or like something is wrong with her.
She wasn't even able to check her own BG level and the staff at the school is not allowed to pierce the skin. My solution to that was to pack David up and camp out at the school for the three hours she was there every day. I didn't hover, I did production work for the teacher and walked the halls with David so he wouldn't be too distracting. I just wanted to be in the building if Bekah happened to need me. I did that for a couple of weeks. Then I did every other day or so and eventually I let her ride the bus and be at school the whole time with out me. This was only after I knew she could confidently check her own BG level if necessary.
I keep my cell phone on my person at all times while she is at school. Her teacher is great! I made her a cheat sheet with number ranges and what to do with the given number if Bekah should ever feel the need to check at school. Bekah has never needed to check her BG level at school.
She eats a good breakfast (brunch) before school and then at school has a 15 carb snack (no insulin needed) and for good measure a cracker before she gets on the bus. Then lunch (or a large snack) is after school and dinner about 3 hours later.
Maybe I am being a neurotic, overprotective parent. But at this point I don't feel like the school she is at currently is the best option for next school year.
I welcome your thoughts.