Thursday, July 21, 2011

For Joe...

Pre-post note: Joe's school, his teachers, his teacher's aides, his school nurse, his principal have all been exemplary in their care of children with diabetes. I am sharing this out of Joe's need and out of my need to support Joe.

"OK Joe, I need to talk."

Joe was pre-occupied with spying on Oscar (our Miniature Schnauzer) and Gus (our friend's Miniature Schnauzer) who were playing tug-of-war with a mechanically-squeaking Zhu Zhu pet, while Bridget played the Vietnamese Bamboo Xylophone as a "doggie distraction" (again, not making this stuff up).

"Joe, seriously, I need your opinion about something."

I have him come with me into a different room. "Joe will you be OK with doing all of your care in the Health Office next year? Or do you want to do some of it in the Classroom? I need to know."

Joe responds without hesitation "Not in the Health Office. I can do lunch, if I have to. I am late to Math every day. I am last to lunch every day. I miss so much and people make fun of me for not knowing what to do." This last bit was referencing instruction that Joe would miss while he was out of the Classroom for his Diabetes Care.

"Alright, I understand."

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

**********
Today on the phone, I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He is ready for more independence. I want to nurture this. I want to foster it. I want to facilitate a learning environment that isn't dictated by his diabetes care. I want this not for me, but because of what he said to me tonight. Trust me ... I was ready to not rock the boat.

Some history...

During Kindergarten and First Grade all of Joe's care was done in the Health Office. Those classrooms are in close proximity to the Health Office. While Joe did all of his "physical" care at that time, he relied on the school nurse to guide him verbally with blood sugar and carb count entries into his pump. In Second Grade, Joe continued to grow with his self-care and had made the "calls" when he should "boost", when he should do a "combo bolus" of 0%;100% over 30 minutes when he was going into lunch with a borderline low (70s) blood sugar, and his carb counting and nutrition label reading were progressing. At the beginning of Second Grade, the school nurse came to his classroom for his morning snack check and bolus; he would go to the Health Office for his lunch blood sugar and bolus; the nurse would come to the classroom for the afternoon blood sugar check. The care in the classroom was taking the school nurse away from the Health Office too much, so all of Joe's care was transitioned back to the Health Office for the second half of his Second Grade year.

In the spring ...

I had met with school personnel to start planning Joe's care for the 2011/2012 school year. We were wanting to support Joe with his independence and personal growth. We were also wanting to limit his time away from the classroom.

The Health Office is at the opposite end of the school from Joe's home room. On a good day, Joe walks down to the Health Office through the halls decorated with all kinds of cool art made by his school-mates, he walks down to the Health Office passing by many of his peers, he walks down to the Health Office by water fountains, bathrooms, and all kinds of interesting~to~an~8~year~old~boy stuff... he walks down to the Health Office at a minimum of 3 times daily for routine Diabetes Care. This is on a 'good day'... a day without lows ... a day without highs. Joe misses quite a bit of class-time due to Diabetes.

The tentative plan that school personnel and I had arrived at during this meeting was that: Joe would do his morning snack blood sugar check and bolus in the classroom with an aide over-seeing his self-care. He would do his lunch blood sugar check and bolus in the Health Office. His afternoon, post-lunch blood sugar check would, again, be supervised by an aide in the classroom.

The plan is being questioned a bit. I won't get into the specifics out of respect for the staff whom all care deeply for Joe and our family. I am writing to get ideas, suggestions, and input.

Parents of CWDs and/or PWDs can you please provide me with any insight to the following:


  1. Where does your child's care take place? Health Office? or Classroom? or Both?

  2. Who oversees or conducts your child's care while he/she is at school? Is it a Nurse? Is it an aide/a teacher/a principal? If it is not a Nurse, do they delegate the medical tasks to the non-medically licensed-personnel?

  3. Have you been asked to sign a waiver if care is provided by anyone other than a nurse?

  4. Any other good tips/ideas/situations that you think could be helpful?

A day-in-the-life of going to bat for Joe.

27 comments:

The DL said...

I was 15 when I was diagnosed, so in high school I would take care of my stuff in class.

NikDuck said...

I have no advice since we are just embarking on this journey with kindergarten in the fall. I am VERY interested in everyone's responses and your advice though about all of this. I have a post brewing with some of the same questions. So much to think about! Glad to see a post from you again. I've been thinking about you at hockey camp this week!

Becky V said...

I am also newly embarking on this for John with K this year. However his pre-school was WONDERFUL. They do not have a nurse on staff, so they agreed right away that it made more sense to do D-care in the classroom - with John's teachers supervising. John has been able to do his BG checks since he started pre-school at age 4, so the teachers just had to keep track of the time and what the treatment was for the BG. The teacher also ran all of the pump bolusing. Very much like your play date cheat sheet, they had specific instructions on what to do and when to call. We had almost no problems. I realize we were very fortunate. My initial brief meeting with the public school nurse was that D care would not be in the classroom, but i will be advocating for it, since it is what John is used to.

Lora said...

I have been thinking of this myself with school only a short month away. On a "good" day, Justin sees the nurse twice(before lunch and snack).

Last year, I inquired about Justin testing in the class and the nurse wasn't comfortable with it so I let it go.

But he is going into 5th grade. I think he needs to start being more responsible because he's not going to go across campass once he gets into middle school.

I know he is allowed to test in class... I just haven't decided if I need to push it. I agree that he misses a lot... not only that, but Justin takes a few minutes to get back into the "groove" of things, so that just added to what he missed.

I guess that might be something I NEED to talk to him about. Knowing him... he'd prefer to go to the nurse to get out of doing work. Little shit!

Naomi said...

Up until about 4th grade I did most of my testing in the nurses office. Then I slowly was allowed to do some testing here, some there. It also helped that through elementary school, I only had two classrooms and was allowed to keep snacks stocked in both. However, I had to go to the nurse for all my injections.
Through eighth grade, I was overseen by my nurses. The teachers knew what signs to look for and had "buddies" walk me down, but (up until 5th/6th) I went to the nurses for lows/highs.
I would say, if Joe is ready to do it, let him! If you're concerned with what may happen, let him try it out slowly (say, one day a week) and then graduate if all goes well. Maybe ask if the aide can call the nurse (or vice versa) to let her know what happened at those two times?
The two reasons I didn't do it sooner were because I was on injections and the teachers weren't able to put as much time as I needed into helping me with all of that.

sky0138 said...

Since we live in Canada, we don't have nurses or medical staff in schools at all. There are a couple public health nurses that can make the trip out to schools to oversee things if you are lucky...many d-kids + not enough nurses= not the greatest plan. SO, Emma does morning snack check and bolus herself while the teacher oversees. Then I pick her up and bring her home for lunch (unless its pizza day or sub sandwich day...and thats a whole 'nother ball game!) Then Emma does afternoon check and bolus for snack on her own again with teacher overseeing. So far we've lucked out with amazingly supportive teachers who can spot a low from across a sea of hyper 7 year olds and make Emma check her BG too. I think it's amazing and incredible that you are easing Joe into more independance. You are a rockstar my friend!

shannon said...

[Background: L is 11 and will be starting 6th grade next month. I am answering all your questions from her 5th grade experience. There may be some changes this school year since her classrooms will be farther away from the nurse's office. In 5th grade, her homeroom was right down the hall from the nurse.]

1 - Both. L tests her BG at 10am in the classroom, and a couple of days a week there is a morning snack. She goes to the nurse's office for her pre-lunch check, talks about what she's eating and how many carbs she'll eat, then pre-boluses. She is usually the last to arrive at lunch and it does bother her. She also goes to the nurse's office at the end of the day, to check her BG before she gets on the bus. Additionally, she carries her tester kit with her as she changes classes and does test herself in the classroom if she's feeling low. She also treats herself in the classroom. Sometimes the teachers do not even notice she is doing so.

2 - The school nurse is the person in charge of her care while at school. If the nurse is absent, there is typically a substitute. If for some reason the nurse is not available, she knows to consult with a specific school secretary, though I don't believe that ever happened last year. But I would say that this specific nurse would be considered "non-medically licensed-personnel".

3 - no.

4 - general advice to all parents sending their kids off to school with D: try to meet with the nurse/staff as early as you can; before school starts if possible.

get a 504 plan in place, even if you don't think you will need it.

if you learn from your child or the nurse that your child had a low BG that day, if possible, try to make a note of which class it was in and what they were studying. that way, if a test comes back with an unexpected or lower-than-usual grade, you can look to what they were studying when they had a low and see if that might have interfered with their learning, whether due to the low BG itself or if they had to leave the room for treatment when something was being studied (this was suggested by our school nurse and would never have occurred to me).

i can't think of anything else right now, but i look forward to the other comments.

Joanne said...

Nothing to add, because obviously we're not there yet... just wanted to say I hope it all gets figured out in a way that's best for Joe.

Kelly said...

Man, this is a hard one. I'm still not content with how we have managed "D" in school the past 5 years for Maddison! It always seems she misses too much class time, recess time or is too dependant on others....

Typically for school Maddison would walk to the Health office for her first check 2.5 hours after breakfast, then again before lunch. At lunchtime she would get get half the carb bolus up front, and correction if necessary. Maddison has never been a big lunch eater, so she would have to come BACK to the nurses office with any lunch uneaten/eaten and get the remainder bolus then if any. Problem with this....missed recess time. But, with a picky eater that sometimes just doesnt want to eat it this was our only choice. (This year though (blog post pending!) EVERYTHING is going to change with a new school and greater indpendance)

For lows the teacher would call the nurse (by phone) to the classroom. I must say we were VERY LUCKY to have a FT health aide and FT RN in our school that were within a short hallway of Maddison's class and willing/able to accomidate this for us. The problem here was that some kids were fearful of needles, and it distracted the class.....so it ended up Maddison would sit outside the classroom door and wait for the nurse. Waiting is never good when you are low! Sure, her wait was probably less than a minute most times...but still. Now that I look back I wonder WHY THE HELL I Didnt have Maddison keep a meter in her classroom for lows, check and treat while waiting for the nurse to get there!!?? UGH.

Alexis Nicole said...

I love the pics you add. Such a cutie.

I'm probably not the best person to help since in Vegas schools cannot bolus the kids. They cannot count carbs. So its either I come in and do it OR allow him to do it. If I allow him to do it I have to sign the 504 stating he's self reliant. Nope. I won't. Cause then it gives the school less responsibility. So I go for boluses, and carb counts.

With that said J checks his bg in the nurses office before recess, lunch and at 2pm (2 hr post lunch). If he's low they come to him, even though he treats on his own).

To minimize time away from class he leaves 3 min earlier than everyone else.so while they are lining up to go to recess he's walking with his buddy to the office. Same goes for lunch.

So far it works. He's only been late for recess/lunch if he's low or high.

Also we don't have a school nurse available everyday so the nurses assistant does everything with him (aside from insulin dosing/carb counts).

He also has a cell phone. If he needs to check from class he calls me and tells me what bg was and we discuss. Idk if that's an option?

Hope this helped some. Xo

Scully said...

I certainly don't want to ruin all your awesome tips and comments. I just wanted to say how I am, yet again, humbled by what goes into parenting a CWD. You are amazing.

Tracy, Mom of The Diabetes Dude said...

I posted on your FB too but for the last year or so, we have insisted in Noah's 504 that he needs to be allowed to keep his PDM in the classroom and that he be allowed to check his sugar as frequently as he needs without missing class. The principal, etc., had no argument about the fact that it was a good idea because it cuts down on the amount of class time that he is losing by walking to the nurse's office. He basically checks his sugar as needed as well as a set number of times during the day anyway and if there is an issue with a low or high or he needs to bolus, the nurse will be called to the classroom to "supervise" his bolus. If he is low, the nurse is called and she will either come to the classroom immediately for his care or another adult will walk him down to the nurse's office (teacher's aide, or another adult). He pretty much only goes to the nurse now before lunch and that is only because she has five kiddos she needs to check all at the same time so it is easier for her to have them all in front of her. Also, if the nurse is going to be out of school for the day or if there is a substitute nurse, we also have in his 504 that the school is to call us in the morning and let us know, this way, we can decide if we want to send him to school that day or not. If we choose to keep him home, it doesn't go against his absences. We have had to do this because there is one sub nurse, in particular, that we feel doesn't care for him appropriately enough or is too inexperienced, so we normally will not send him if she is the sub nurse for the day. We've got some other stuff in his 504 and if you'd like to see a copy of it, just let me know!

Penny said...

Girlfriend, I feel like you are writing about G's life!!! We are dealing with some of the same issues and did last year too. G complains about missing class time and being late to lunch cause of checking in the nurse's office. We changed her plan last year so she only saw the nurse at lunch time for her pre-lunch check and bolus. It worked out well.

That being said, I should preface all of this in that I have a nurse who is willing to do anything. Honest. She is up for anything, willing to learn, change, try something, and she lets others know that Grace's care comes first and everyone will be on board. I want to actually have her bronzed when we leave Elem. school. So, she's flexible and always interested in the latest and how we can incorporate Grace and her maturity into the equation.

1. Grace has a total kit for testing and treating in her classroom/homebase. There she tests mid-morning. She has a cheatsheet pasted into her kit, 50 or below requires the nurse to be called and she comes with juices, tabs and glucagon. 50-80 requires one juice and nurse to be notified only and a recheck within 15 minutes. 80-150 within range, great, stay in class, all is well. Above 200, go to the nurse.

Grace goes to the nurse at lunch time, leaving class 5 minutes early. There she pre-boluses for lunch, counts her carbs if she is buying or packing and doses. Then she heads to lunch, joining her class as they stop in front of the nurse's office to wait for her (yep, they do)

Grace checks before PE class in the nurse's office and treats accordingly. She also checks there before she heads home each day, as she walks to and from school, so she has to be above 80 to walk home. She then picks up her entire kit from the nurse's office, as that is where her main kit resides all day.

2. Nurse oversees everything. Teacher in class has a walkie-talkie to communicate with the nurse. It's in Grace's 504 plan. Teacher has the walkie talkie with her at all times and it's hooked to the nurse, main office, custodian and principal, that's who only has the walkie talkies.

As I said, in mid-last school year, we developed the kit in the classroom cause Grace had been running to the nurse's in mid-morning to check and thus, missing Math class. This kit in the classroom allows Grace to have independence in checking and then we just follow the number rules, honest. We literally abide by the numbers. The new teacher may not understand what they mean in the beginning, but she knows just how to respond to them. So does the Principal.

3. Nope, no waiver asked to sign. All of this new plan is in her 504 plan, which means she is allowed to do it, regardless of who is 'supervising' her testing. Se is allowed to test in her classroom. There is no 'care' provided by other personnel as Grace is testing herself and they are acting on the numbers. I guess you could call it 'care' they are providing, but it's splitting hairs in my opinion. She has rights and I'm exercising them. They can figure out if it's care or not. I would not sign any waiver, I know that. I would be calling ADA Legal Advocacy before I signed any waiver of anything when it comes to my child's right. Just my two cents (no names jokes, please ;0)

4. I have lots of ideas when it comes to our kids and thinking outside the box when it comes to handing over some responsibility to them and their care. I believe in moving along with the child and keeping them going into self- care, cause isn't that what it's all about anyway? It's also about respect for that child and their diabetes.

I probably need to chat with you, as my fingers hurt now. I will email you my home # and we can chat. This is good stuff Reyna, This is good stuff for Joe.

Shiloh said...

Alexis Nicole, I want to tell you that legally you have the right to expect the school to care for your child. I am not one to advocate suing, legal action, and the like BUT this is exactly the type of situation where the ADA says "discrimination" and it's valid. My sister (whose son has D) lived in CO his first two years of school, and they told them they would need a parent to come in to give him shots etc. My brother-in-law said they'd be happy to train folks, request necessary training from CDE's if need be, etc. BUT that if they refused to provide adequate care for my nephew, they'd be receiving notice of appropriate legal action. He quoted the ADA book at them frankly. They changed their tune very quickly and the rest of the story was very much a "happy ending" (no bad attitudes etc - very cooperative). There was no way they would be able to go in daily to bolus him - it was reasonable accommodation - and they did NOT have nurse's on campus but once a week. So the law is there to help us - learn it and use it appropriately.

Your son also needs to be SAFE, and that includes bolusing following appropriate guidelines, just as it would include treating lows and highs (haven't you ever had to bolus to treat a high? They would refuse to do that it sounds like!).

As for us, we provide the carb count for our daughter (that's reasonable) and have taught our schools how to bolus and correct etc. Lots of communication both ways. And I'm pretty sure when she was younger, they've had to administer shots in my absence to treat highs. That said, I do go in if she needs to change her inset.

Reyna, you rock. This is great. I'll be in touch more - these are the issues we ran into last year and which we are trying to "figure out" for this coming year (paving the way for you, my dear, even as we learn from you!) The CDE's say esp. at Patience's age (7th gr) that the more we check off on "self-reliant" the less push-back we'll get. My impression is that they will push-back. It's legal. Patience just wants someone to "check to see that her numbers match" - not a legal thing, just a "look over my shoulder and tell me did I type this correctly" thing. It's her preference, not my requirement. But the school sees that as taking responsibility vs. friendly assistance and "won't allow it", so we're going to try again this year, wording things differently, or not at all...

You'll love the next school w/our favorite nurse and amazing, cooperative, teachers, who were very willing to oversee things. At least I hope!

Shiloh said...

"I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are."

They are NOT magnified. They are real, daily, and an issue. It's not about being different; it's about "every day", not getting to sit w/your friends (can't save seats), having to ask what was missed, etc. Every day. Not just once a week or once a month. Daily. It's hard. Even my not-so-sensitive, go-with-the-flow daughter has been in tears over these very things.

FeltFinland said...

It is very interesting to see how you all manage Diabetes at school. Here in Finland most of Aleksi's care is done by his teacher and a classroom assistant. Aleksi can do his own blood sugar checking and bolusing with an adult casting an eye to check the right figures go in the pump. The kitchen staff calculate the carbs for his lunch once he has served himself.We have tried to keep his school day as 'undiabetes' orientated as we can and have managed quite well so far with the input from school.
Luckily we live only 5 minutes walk from school so I am always ready to leap on my bike and head there to help if necessary. School are also very good at ringing me if they have any queries or problems too. Good communication is so important. Is it really only a month before they go back to school?(secret skip and smile from Mum!!!!)

Stephanie said...

Reyna, I don't know much about this since we are just starting out, but I just happened to attend at Safe At School 504 meeting at our Children's hospital last night, hosted by the ADA. She had GREAT information, and one of the things I'd urge you to look into are the statues in your state. Arizona has a statute signed into law that says that school districts and their employees are relieved from civil liability if they administer medications and supervise under good faith - meaning basically that they shouldn't ask you to sign a waiver, they are protected anyway. I also learned that whether the 504 is written or verbal, your child is still protected by the law. You should be able to put whatever you want in that 504 as long as it's a reasonable expectation. And I say that letting Joe do classroom care is a total reasonable expectation! I would contact your local ADA office for help if you think you need it - they told us they are always willing to come out to schools and help clarify the law and issues. Good luck! I am totally nervous now about the fact that Adam will be missing so much classroom time...I know it's only kindergarten, but it sux.

Barb (Diabetes Advocacy) said...

Care has always been done in the classroom. We also have no school nurses in our school but did have a secretary who helped another child with D. My son was fine doing things quietly in class this meant that he didn't interupt the class or miss anything. His teachers watched over things for me although at one point we did have the help of a TA for a short period of time. We also always had access to a phone so teacher or child could call me with questions. An older brother in the same school was also a great help for years when they had a question.

Anonymous said...

I was diagnosed in 4th grade. For the first part of the year, I went all the way to a seperate building for lunch, afternoon snack, or whenever I felt low or high. So I can relate to that. But the next half of the year I carried my stuff with me and only had to go over to the nurses office at lunch, which helped a lot. In the afternoon check I used the phone in the Faculty room to call the nurse. I think that helped a lot. When I checked it was in the back of the room on a tray that my teacher bought. And if I was low, I ate carbs in the room, unless I was really low, and in that case, a buddyy walked me over to the nurses. I don't know if we had to sign anything, considering i was in 4th grade. But I don't remember my parents sign anything. Good luck to Joe and the school-year!

Stacy said...

Hi Reyna,
So glad you asked these questions! Isabelle was diagnosed with 3 weeks left in school last year so this year I am hoping to go into the year with more/better info. We do have a RN at our school and the great news is her daughter is a friend and Isabelle has actually spent the night at their home before so needless to say I am very comfortable with her caring for Isabelle during school. She has been very open and supportive/protective of Isabelle. This year we will be completing a 504 plan (our 1st).

Last year all of her care was done in the clinic and yes she missed quite a bit of class time. BUT we were also new to this so her BG was all over the place. I am hoping she can do all her own BG checks in the classroom this year. I am hoping to have a "low snack" cooler kept either at her desk or her teachers desk with 15 & 30 carbs snacks in it. She is doing so great and I am so proud she is doing so much of this on her own- Camp has helped with her independance and she really gets when she should give herself carbs or free snacks.

I will still have her go to the clinic after lunch to get her shot.

I'll let you know what they say- we have open house 7/28 and school starts here AUG 1!! Can you believe it!?!

Kerry said...

Colin has been on his own since grade 1. We have no nurse or aide's that can help him so he just tests and if he needs assistance he asks for it and I am there in a jiffy (live 6 doors down from the school) they will call if he is low and only if he is over 18 so I have been frustrated for 4 years now. Grade 4 for him next year and we want to start pumping next year also...I am scared to death of that cause no one will assist him here. All new staff in the office next year too so I will be re training everyone but they really put it all back on him to do on his own. sucks big time :(

KerryC said...

We have just started with all these questions too - Isabel is 4, and starts at "Big School" in Sept. It'll be entirely different here to your experience of course, so I don't know if my comments will help.... I met with her teacher, the nurse, Head of Infants, both PE teachers, the music teacher and the Mandarin teacher about a month ago to discuss her care and they were very helpful. More than happy to work with me and do things in the best way for Isabel. We decided that Isabel's teacher will do all her testing and bolusing in class. She felt that this would be least disruptive for Isabel and would mean that she isn't singled out too much. There will be 4 other kids in her class from her pre-school who are used to seeing the BG testing and bolusing anyway and the teacher has asked me to come and do a "show and tell" to educate the other kids. I am more than happy with this set-up because (a) I know the teacher (she taught Josh two years ago) and I am 100% confident that she will take good care of Isabel. And (b), the nurse (although a dear, sweet lady) is elderly, Singaporean and a bit clueless! She is concerned that the BG testing will hurt and suggested that in the first 2-3 weeks of school, while Isabel is getting used to it, we test her LESS to avoid upsetting her! So I was glad that the teacher took the responsibility on board (actually it was her idea). Glucagon will be left in the nurse's office and I will also give her full training on testing along with the teacher and 1 or 2 others for cover.

I will be writing out full instructions for testing, bolusing, temp basals, etc. as requested by the teacher, plus how to recognize and treat a hypo. The teacher will have my mobile no. and initially will call me at every test. I have volunteered to be a "swimming Mum" and help out with swimming lessons all year! And I will go along for PE lessons for the first 2-3 weeks too.

So that's how we are going to work it. We get a lot more choice with the school we picked for the children - we are very lucky. At the big international schools here the kids HAVE to go to the nurse for all testing, bolusing, etc. Ours is a small school (very small, in comparison to some) and has a special needs department ( that wasn't why we picked it for Josh - we signed him up before Isabel was diagnosed in fact). We picked it because of its small size and personal feel and we are so very happy with it, so far :) Anyway, because of its small size they can be flexible, which is great. We have nothing like 504 plans here or any state requirements that affect the international schools - each international school is free to manage this stuff as they see fit (within the law of course). So we are incredibly lucky.

I don't know if that helps at all - probably not! I hope you manage to get things worked out for the best for Joe, to minimize the disruption. We felt that was key, for Isabel, and thankfully her teacher agrees. Good luck!

Holly said...

Hey girl! Let's see...you've gotten some great info!! MC does all testing in the nurse's office, only with the nurse, and she goes down a little before her special (pe, music, art, etc) or lunch so she gets to the cafeteria in time to get a "good" seat with her friends-so we completely understand!
I can't remember the other question...no, we don't have a 504, but if I thought I wasn't getting the best care, you can bet I'd have one!!
You are the best advocate for Joe!! Love you!

Michelle said...

Hey Reyna! I haven't read through all the responses...but I'm sure you've already gotten some great feedback. I'm interested to see what others have as their situation. Charlotte will be entering 3rd grade this year as well. I plan to keep things similar to last year (with a few new additions to her 504). We do have a school nurse, but she is only on campus 1-2 days per week as she oversees both the elementary and middle school in our area. So Charlotte has a para/aide (she'll have the same one as last year) who follows her and the other paras are also familiar with her and her usual back-up is her former para from 1st grade (who is incredible!). I actually prefer this set up since these women are able to spend more time with Charlotte and have gotten to know her more personally and can really give me insight into her behavior changes, appearance, etc in relation to her BG levels (I hope that came across right). Also, because she has the para she is able to check in the classroom at all times...unless there is an issue that the para isn't able to handle she remains with her class at all times. The paras have a clipboard with all of her information documented for the day...and this is sent home each day for me to be able to review. They also have our phone numbers and will touch base with me throughout the day regarding her blood sugars (if out of range) and to bolus for her lunch and any snacks. There have been other parents at our school who have been unhappy for various reasons, but I've been very pleased with Charlotte's care and the way everything has been handled. I am quick to voice my concerns in a pleasant, but matter of fact way and make certain that we are able to work out any issues in a way that works for all involved, but keeping Charlotte's safety and well-being our top priority.

Cheryl said...

Hey Reyna! Looks like you have gotten some great feedback but here is what my T1 daughter has to contribute...

I think he is right to want to do his D stuff on his own. Joe is totally right about missing a lot of school doing D stuff. It is really, really hard to be the last one to enter the classroom or to go to lunch and having to always rush all the time even when you aren’t late. Wondering what your blood sugar is during a test or something when you feel low and having to either wait or go to the nurse to check in the middle…and then have to make it up because you missed it while you were gone. Like you said, its the social stuff that REALLY sucks about diabetes...not just the pricking and the sticking!

From Mom...that said, Nicole is 12 and will be going into 6th grade and, as you know, we are pretty new at this. We (hopefully) are getting a pump soon. She is excited...I am scared to death:-P
She will, in middle school, have to be much more independent in her D care this fall. We have a fantastic school nurse who is very on top of things. But, she is usually at the elementary school as opposed to the junior or senior high. However, I have seen so much growth, strength, and ownership in Nicole as she takes charge of her care. I think Joe's willingness is huge for him...a big step in his taking charge of this disease and owning it...instead of it owning him. Hugs to you both! He will be great :-)

Anonymous said...

When we started to rely on our DD to do her own diabetes care (she would go in the hallway outside her class to test; her choice), the one exception we made was we wanted her to contact us before and after Gym where we would assess the blood sugar number, IOB, etc. to see if more Ex-carbs were needed. We did not rely on the nurse to assess this, though she had instructions. In the first year we loosened up the reins, we also made sure we got a phone call before she got on the school bus. Prior to us "letting go" (we started by letting her not call us at lunch), she would call us before lunch or any snacks, before and after gym and before she got on the schoolbus. Yes, there is a school nurse, but we wanted control, not to rely on the nurse's judgment while she was at school. I would put in the 504 Plan that Joe can carry a cell phone and speed dial you with any and all questions re his D care during the day. This takes surprisingly little time, three or four minutes, three or four times a day. At this point we only ask that she calls us before and after Gym because she still drops a tremendous amount during any exercise. She is 14. When she was in elementary school the school nurse was located literally across the hallway from her classrooms for two years after she was dx'd with diabetes. As for "signing a waiver", that would be nonnegotiable on my part. The school is still responsible for the child's care while at school and I feel signing a waiver could compromise the child's care. They need to know they are liable and accountable for any problems while on school grounds. Good luck; you have all summer to figure out what works best for Joe. Let us hear what you decide.

Lorraine of "This is Caleb..." said...

9:30 in classroom with the nurse
prelunch in nurse's office with the nurse
dismissal/post lunch in nurse's office with the nurse
all other times wherever he is supervised by whomever is with him w a call to the nurse who comes to him.

This was a change made in 1st grade after some serious mistakes in K. There was not much resistance since I was able to point to some serious situations that would have otherwise been avoided with this plan.

In third grade though, I'm hoping to change it a little to have Caleb be more independent. Not sure how to effectuate that exactly yet...