My daughter who is in first grade was just diagnosed on 2/26, I sent her back to school after talking with the nurse. Although now that I have been doing more research about diabetes and since she has just entered her honeymoon phase and has been running low I am now no longer comfortable sending her to school, as there is only a school nurse there when she needs her shot for lunch and then to chk. bg after recess. The nurse is never on time which makes my daughter miss out on what the class is doing and/or recess since there is only 15 min. to eat lunch. Has anybody else in Washington had a problem with the school not having a nurse there all the time?
Although I am not from Washington, I can relate. I was diagnosed in elementary school as well and my honeymoon phase was a difficult situation. The best solution is ultimately communication. My school was very diligent in helping, from the school nurse, to my teacher. Even if it means sitting down with her teacher and asking for assistance.
I know your daughter is young, but this is something she will be living with for the rest of her life, when I was diagnosed my parents were very diligent in me learning to do everything on my own. The sooner she can learn to do her shots by herself, the more positive (in my personal experience) her outlook on her diabetes will be, as well as the whole nurse not being around situation won't be a problem. My parents gave me encouragement to learn to do it on my own, it can be intimidating, but I've seen diabetics diagnosed at a young age whose parents tested their blood glucose and injections for them for quite sometime after diagnosis and to this day they still have a hard time doing it on their own.
Having diabetes unfortunately is not accommodated by everyone. In every school there is a nurse who isn't always around, there are teachers who have no clue what diabetes is or how it affects us. Independence is the key. I can understand being nervous for your daughter being at school with a new disease and especially at such a young age, that is unstable, but she has 10 more years of school at least, and she can succeed in education and in her health, she will be a stronger person because of it. As my parents told me in a corny way, getting diabetes is like being a caterpillar you can stay in the protective little cocoon and be hindered from ever experiencing life on your own, or you can take it into your hands spread out your wings and fly with it.
Regardless of what state you are in you need to have a 504 plan put into place. The only time this does not work would be if your daughter attends private school. It will be a plan put together by you, your doctor, the school nurse and the school administrators that states your daughters needs and accomidations. It is legally binding and MUST be followed. Contact the ADA for more information, and if they give you any problems with requesting one the ADA will provide legal help on where to go from there. There are several people in this community who can help you, but also try Childrenwithdiabetes.org as there is a whole forum for parents with T1D children that is very active and helpful.
I fully agree with setting up a 504 plan.
In addition, can you set up a meeting w/ her teacher and principal? Maybe try to get them "on your side"... Then you can train the teacher to do blood checks, etc if the nurse is late. I'd emphasize that every child has the right to a free and appropriate education under federal law, so it is a must to minimize class times missed. And, missing lunch and recess "counts" because that is her time for social interaction and exercise.
Good luck!!
Many schools don't have full time nurses anymore. Because of that most people find the 504 plans helpful. This site has good ones. http://www.childrenwithdiabetes.com/504/
As others mentioned, your daughter is probably old enough to test on her own. I started doing my own shots when I was 5. She's definitely old enough to identify and treat a low blood sugar.
If you or a family member are available during the day, you can be the ones to stop at school and help her as needed.
You may ask your daughter's healthcare team about lowering her insulin on school days or having snacks at times when she's running low.
Don't know if this reassures you, but I was diagnosed a long time ago, before glucose meters and cell phones existed. Somehow we just dealt with the challenges and I never passed out or had any major problems in school. You are in a transition time right now, but you and your daughter and her school will figure out how to make it all work. Take care. -Jenna
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As others mentioned, your daughter is probably old enough to test on her own. I started doing my own shots when I was 5. She's definitely old enough to identify and treat a low blood sugar.
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Jenna has great advice, but I have to disagree here and say that she still needs an adult to supervise when she tests and treats. She's new to T1 and may feel confused or embarrassed if she's low. I agree it's great to teach her to do it, but I'd feel better as a parent if an adult was watching to be safe for now..
Thanks everyone for all of your advice. I am meeting with the school nurse today and with the staff tomorrow to see if they will at least have someone in the school while my daughter is there that can at least administer the glucagon, as she is not yet aware of how she feels when she is low, she will go from 140ish to 40 and not have a clue.
Definitely Sarah. I assumed it would all be done with adult supervision. I have a 5-year-old myself and can testify that even the easy stuff (getting a glass of water, washing his hands) needs adult supervision. =)
Hi, we have an all-day nurse at my daughter's school, specifically because of her diabetes management and how unstable she is. It was extremely difficult to convince the school of the neccessity of having one, especially when they thought that a nurse showing up 15 mins before her lunch to check her sugar and leave was acceptable. She wasn't even there to give her the injection and treatment that she needed, I had to come in every day to do it. My little one is on a sliding scale and we can't figure out her dose until we know not only her levels before she eats, but how much she eats. All I was told was that the nurse was too busy and no one needs a nurse all day. I contacted my doctor who made a huge effort to inform them otherwise (specialized services here in IL deals with all the medical problems and needs of students, it wasn't the school itself giving me the problems it was specialized services, the social worker and principal in the school were lobbying for a nurse too). We finially got a full-time nurse to come in, who then turned around and wanted to administer the glucagon injection if my daughter was CONSCIOUS and under 40. I about had a breakdown. I told her no, and then specialized services told me that their nurses were trained and they didn't need to talk to me or let me know what was going on at school. I guess there is a nurses code here that no nurse will take advice from a "lay person" such as myself. They wanted to figure out her insulin, not contact me, and I had no say-so on anything that went on at school. Well I called a lawyer that works pro-bono for children with diabetes in the school system and he helped us out immensely. My doctor's nurse referred me to him. The minute we had a lawyer specialized services became extremely cooperative like both I and the employees in her school wanted. Now, the nurse at school calls me every day after my daughter finishes lunch, tells me what her pre-meal glucose was, how many grams of carbs she ingested, and then we decide how much insulin to give her. Thank goodness there are good people out there who care! I honestly was ready to pull my daughter out of school and home-school her. I know every school is different, just make sure that if they give you problems, don't back down. You know what's best for your little one, not someone who sees them for a short period of time every day. And just because the person is a nurse doesn't mean they have diabetes experience. I had to personally train 3 nurses on how to draw up a 1/2 unit because they never had to do it before.
Not trying to scare you or anything, but have a little bit of faith and you guys will come through!
OMW- if this doesn't sound like my story and I'm in another state completely, in a rural school, with about as much ignorance going on no matter how much training I seem to do. I get some trained and then the school merges and it's like starting all over again, with an even larger district. It's exhausting. I might have to get one of these pro bono lawyers to help me too. I really hope it doesn't get to that point, but if it does, it could mean the difference between life and death of my child in a district that doesn't seem to get that each diabetic is an individual case. Although some can self monitor, feel lows, etc.. others cannot and those that cannot are still guaranteed an education, and that doesn't mean making me home-school my child because you won't provide the services she needs. I might be back in touch with you about how to get a pro bono lawyer should I need one. My meeting is coming up very shortly.. wish me LUCK!
If you need the name of a lawyer in your state maybe mine has a referral. He consults for the American Diabetes Assoc.
If you need the name of a lawyer in your state maybe mine has a referral. He consults for the American Diabetes Assoc.
I think ti would make sense to at least have someone in the office who can watch your duaghter test her own blood sugar, look at the number, and say, "Oh, your number is under ___, and the plan the nurse and your parents set up says you need a box of juice if your number is under ___. So, here's your juice."
And the glucagon. You're right on that, as well. I actually think her teacher should know how to do that. It's the teacher who will usually be near her, and I'd rather she be able to grab that red box off a shelf than have to call the office and wait for someone to rush over with it.
Hi crazy4cure,
The JDRF website has a section you can read about 504 plans which I hope will help you better understand your child's rights at school. Here is the link: http://www.jdrf.org/index.cfm?page_id=103474
Thanks for the info. Unfortunately we have pulled my daughter out of school for the remaining of the year. After meeting with the school nurse for hours she told me she was going to ask the staff if anyone would be willing to go through the diabetes training course so they would be able to administer the glucagon. I called her the next day and she said that no one was willing to do it. And it wasn't until I told her that we were going to pull her out of school that she decided to tell me that there is a teacher at the school who's daughter was diagnosed with t1 a while ago and had been trying to get into contact with us as soon as she found out that my daughter was there. So all the meetings with the nurse have been a complete waste of time because there is already someone there who could give the shot! I am so frustrated with the nurse and don't feel that my child's well being should be in her hands when she can't remember the simple things. Not only that but she was telling me one thing and the staff another. It amazes me that she cares for other t1 kids at other schools. I am now in the process of looking into the other schools around here and will definitely do an interview with the nurse and principal before we try another school.
I completely understand. I would probably do the same thing. How can schools hire nurses that are not qualified in diabetes and health conditions? It really boggles my mind. I hope that you find a school that can accomodate... please keep us posted!
I live in alberta not washington and i was newly diagnosed 1 week ago. i am nervous to do my own finger pokes but i do my own shots. my shots are done in the mornings at 600 and the evenings at 600. but relating to ur story my school is not the best organised school. somedays we go on a field trip and they didnt even tell my parents. im in middle school and my names sarah and if ur daughter has a bracelet a cell phone( recommended for emergencies) a medical card a poker, a sugar for lows and extra stuff she needs im sure she will be fine. she can text u for the insalin dose text u a pic and then another pic of it in her =) good luck
Sarah