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.
Really??
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.
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My THOUGHTS???????????????!!!!!!!!! AAAAAUUUUGGGGHHHHHHHHHHHHHHHH! (I cannot emphasize that word enough!!!)
ReplyDeleteGood grief...a stupid standardized test...geez.
You are by far one of the bestest moms I know...YOU will know when she is able to do her own insulin...YOU will know all the things she will be capable of doing, at just the moment she is capable of it. And, on top of that YOU and God are tight!
I get so frustrated with the whole patronizing thing with my own kiddo and his challenges. I especially get frustrated when my friends are dealing with it too!
There. That's my vent. I love you.
You have every right to be completely ticked off! If you are in Evergreen School District each school has a social worker assigned to that school. Go to them for help, that is what they are there for. I'm in school for that right now and we had a guest speaker that is a social worker for Evergreen District.
ReplyDeleteAlmost every district has to divide their school nurses between 2 or 3 schools and it is completely wrong. The nurses have to go my district mandates and since they get funding based on those tests that is what they push. I dislike those tests immensely. It stresses my kids out. I have one in college now, one in 7th grade at public school, and my youngest (6th grade) I now homeschool.
Apparently, this nurse doesn't seem to see the process of learning that your family is doing. It is definitely not something you and just hand a kindergartner one day and expect perfection.
There is definitely something wrong there and I just can't put my finger on it.
I will be praying for your decision though.
hugs,
Barb
Hang in there Heidi! I can't imagine how frustrated you must be. Don't every think that you are being an overly protective parent. You are only being an amazing mom who cares deeply about her child and her well being. Not to mention the sacrifices you have made. I will keep praying that God will continue to give you the strength and peace you need in this situation and that He would soon provide you answers as to where to go from here with the school situation.
ReplyDelete- Jackie
You may need to develop a 504 to protect your daughter. That is what they are really designed for. You should have your health care professional be a part of setting up the plan so that you are assured that your daughter will get the care she needs and deserves. I don't understand the part about the staff not being able to pierce the skin? What are they talking about. What if she is too low to check her own blood sugar or should need glucagon. I think you should talk to your Doc about setting up a plan. I would also talk to the CSE chairperson of your school and let them know that you are going to make sure your daugter is treated fairly according to laws that protect children with disabilities.
ReplyDeleteI am a mother of a type one diabetic, but I am also a teacher and this story really makes me mad. They have a duty to help care for your child and keep her safe throughout the day. You should also feel welcome to come in that building anytime you want and quite frankly they should be grateful that you are the kind of parent that is totally dedicated to the care and welfare of your child. Good Luck!
Here in California, we have a nurse one morning a week too. But they will send a nurse to my sons' school at lunch every day-even twice a day if I wanted them to. (I don't...they are pumping and can bolus themselves, they call to confirm the amounts with me...) BUT, shouldn't there be someone to give her the shots, because that is REALLY young to draw and administer your own shots. I hope you get this resolved. How frusrating! They can shove those standarized tests up their nose.
ReplyDeleteOMGsh!!!!!!!!!!!
ReplyDeleteYou're right. I've been a R.N. for SIXTEEN YEARS and throughout my entire career, I have had to have a SECOND R.N. (not a tech, or a secretary, or even a doctor -- a R.*flipping*N.)review the order, double check the dose, witness me draw it out of the vial, confirm the amount in the syringe, and then sign off on the chart.
Expecting a 1st grader to do it on their own is nothing less than ridiculous.
The ADA has an entire program devoted to sending diabetes to school:
http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/
I think you should contact your local chapter to see if they offer classes. The chapter in our area offers a "Safe At School" seminar several times a year. They will be able to help you develop a plan...and, if the school is resistant, they will be Bekah's advocate, including taking legal measures if that's what it takes!
On a side note, YES...Bekah and Addy are VERY close in age. Addy's birthday is 7/2. The decision to hold her back was difficult, but I'm SO GLAD we did it :)
And guess what else? When you guys were celebrating Bekah's 2nd bday on 7/25/05, Addy was in a helicopter flying to a PICU in DKA. That's her dx anniversary.
(((HUGS))) Stay strong, my friend.
Oh my! That just floors me! I was diagnosed with diabetes at age 9 and had a hard time with doing my own insulin injections, even at that age! My thoughts....schools just don't do enough for our kids anymore! The focus isn't in the right place and they're not doing the work that they should be doing! I definitely agree that a different school may be a better option for your little girl. She needs people who are caring and accomodating, not who think she should be self-sufficient at 7 just to make their jobs easier! How ridiculous!
ReplyDeleteYou've gotten some great advice above. Bottom line, this is ridiculous. It takes effort, but you have so much on your side to get Bekah the care that she needs. The unfortunate reality is that much of the time no one is going to offer it and asking nicely doesn't always work either. After a year of doing it "their way", I sat down and politely, but clearly stated my expectations of what needed to changed. There was nothing that I was denied. Sadly, it had to be in the context of "rights" and "discrimination" and such. But if that what it takes, then that's what it takes.
ReplyDeleteGood luck.