School just doesn't seem to care!

Hello,  

I just need to vent since my son's school (he is 9 in grade 4 and dx last November 2010) is not very helpful.  This year I went in with a file folder full of information for his two main teachers and principal.  I made an agenda and went over the important points with them.  

One point was when an activity or gym was going to be outside or off grounds I WOULD NEED TO KNOW to plan his insulin and snacks accordingly and to make sure SOMEONE took his glucometer and treatment for low with them.

Yesterday, I found out he was UNATTENDED as he and some friends wondered off grounds to do an activity for gym.  He was nowhere near the teacher, noone took his glucometer or candy for treatment of low and then he WAS LOCKED out of school for 5-10 minutes when he tried to return with his friends right before lunch!!!!  It is a good thing he was not low with NOTHING on him.  I usually try to put the candy in ALL his pockets (pants, jacket, etc...) but I don't think he had anything on him as he did not wear his coat and he did not put any candy in his other pockets.

Then I got a call from his teacher that SHE FEELS he is going to the bathroom too much (in the last few days) and feels he is using the diabetes as an EXCUSE (nevermind his sugars have been high the last few days and we are seeing his doctor on TUesday) and I told the school always to allow him to go to the bathroom, drink, etc...

This has been going on since last year since he was diagnosed and we have the school social worker who is our advocate and she is going to speak to the school on Tuesday as I HAVE HAD ENOUGH putting my son's health at risk by letting him go outside unattended with no meter and no treatment on him and then locking him out of school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

RIDICULOUS.

Thanks for letting me vent.

Jodi

This may not be what you want to hear, but I think parents expect too much of schools and teachers.   They aren't medical experts and won't be able to provide the level of care you will.  It's also not realistic to think the school will contact you whenever there's going to be special physical activity.

Part of living with diabetes is being adaptable and dealing with whatever the day brings.  

Your son is old enough to take care of his own diabetes. That means having sugar on him at all times.  Check at Target or a sporting goods store for a shoe wallet (runners attach to their shoe strings) and put sugar packets in it so he always has sugar.  

Most diabetics (especially within the first 10 years of diagnosis) can sense a low blood sugar.  He needs to be quick to treat a low.  I've also learned that anytime I'm feeling weird it's best to treat it as a low, then correct later if I was wrong.    

Does your son keep a glucose meter in his desk or backpack?  He needs to be more proactive about testing before activities and letting his teacher know if he's on the low side before going to PE or recess.  

His teacher should be cool with him needing to use the bathroom more often, since that will definitely happen when blood sugar is high.  But make sure your son isn't abusing this.  

I don't make any of these comments lightly.  I was diagnosed with D before I began kindergarten and have dealt with it through college and now, as an adult seeking an advanced degree.  I'm also a parent myself and understand the difficulty in knowing when a kid needs help and when they are capable taking care of themself.  Your son is old enough and has had D long enough to take care of himself in these everyday situations.    

Dear Jodi,

I'm really sorry to hear about your difficulty with the school.  I also have a 9 year old son who has diabetes.  My son is not responsible enough to care for his needs yet and, in fact, his doctor and diabetes educator has stressed that he is still too young to handle his needs.  He will have to deal with it all once he moves out on his own and there is no need to make him responsible at this young age.  I read the reply from jennagrant and I just don't agree with her.  Maybe she doesn't have a 9 year old son, so perhaps she can't really relate.  I understand she's been a diabetic all her life, but she still should not tell you when your son is ready to handle things on his own.  That is for you as his parent to decide.  I have decided that my 9 year old son is not ready and I do expect extra help from the school staff.  Fortunately for us, his school has been wonderful and I always get notified when he is leaving school grounds or having an extra activity.  And that is what I expect.  Perhaps you need to look into getting a 504 plan in place to protect your son if his school doesn't respond as you expect.  I don't usually reply to any posts, but your post and the reply you received got me a little worked up.  I wish you well.

My son will be 9 on Sunday and he was diagnosed in 2006. I disagree with jennagrant too. We changed schools this last year and have been having to adjust to a few new rules. Our old school allowed my son to keep his glucose meeter and snacks in the classroom. I loved this because if he was feel ing low all he had to do was walk across the room and check his bloodsugar, have a snack whatever... he could even call me from the classroom. Our new school has a nurse which is great but the rules are a lot more strict: no snacks or juice in the classroom, his glucose meter has to be in the nurses office which is downstairs from his classroom. I don't really feel comfortable with him having to walk all the way downstairs when he is already feeling low. I have just been trying to do what you are doing, put candy in his pockets, juice boxes in his backpack. I feel a little sneaky but we have to do what we have to do to protect our kids. I don't think it should be up to anyone but the parent and especially the child having to deal with this disease to decide when they need to be more independent  with their diabetes care. I think a 504 plan is a must! They must not be penalized for missing class for boodsugar checks, bathroom breaks or doctors appointments.

Thanks everyone for your replies.

Just a quick note to Jenna that I too am Type 1 diabetic and so is my father since age 1 and brother since age 12 so I know a lot about diabetes.  However, I am not sure if you a child with diabetes but if not is is VERY DIFFERENT!!!  As well, I am not asking my son's school to do anything (which they don't) for my son's diabetes.  He is responsible for checking his own sugar and taking a snack if needed but he is not responsible for taking his meter from the office (he is not allowed to keep it on him) and take it to the park or where ever they go for gym (he should not be the one carrying it as he can break it while playing).

I put swedish berries in all his pockets in case he gets low outside the school building.

As well, my son was diagnosed 3 weeks after his dx of diabetes with ADHD and mild Asperger's so HE DOES need some extra assistance to remind him in case he forgets to check his sugar and take a snack.  As well, due to the Asperger's he is embarassed to talk about his diabetes or tell a teacher he is feeling low.  

I am not asking the school to check his sugar, monitor his snacks, give insulin or anything else but I do need to know when there is a full day of activities planned so I can adjust his insulin and give more snacks if needed.  

My son goes biking, swimming, tennis, goes to friends houses, on vacation etc...eveything a non-diabetic does but when he is at school for over 6 hours a day, I have a right to know that the staff has some knowledge regarding diabetes and that they will be somewhat helpful and not lock my son out of school without his meter or berries in case of low.  

Thanks Enrika and Mannddplus for your support.  I truly do believe as I tell his diabetic nurse (who is also diabetic himself but not his kids) that when it's your child it is very different from when it is yourself.

Because of your son's Aspergers and ADHD that definitely changes his ability to oversee his own diabetes during the school day.  You didn't mention that in your original post.  I'm sorry you're having to deal with a tough situation, but it sounds like you're doing well.  

The average 9-year-old is definitely capable in managing their diabetes during school.  I did it at age 5 when I started kindergarten, just as your father probably did since he was diagnosed before beginning school.

I still completely disagree with parents who think they should micromanage their kids D until they grow up.  Yes, it's unfortunate that a young kid has to deal with diabetes, but that's reality.  They  are going to have to be more mature in some ways than other kids.  That's not the end of the world.  

I am not the parent of a diabetic, but I do have a 5-year-old son and understand the balance between independence and needing help.  

Mostly I hope parents won't diminish my own insight.  I have lived  with type 1 for 34 years and understand what it is like to be the diabetic kid.  

I do agree with you, jennagrant.  My daughter was diagnosed almost two years ago, when she was 9.  From the beginning she needed to be in control (with our support).  We got her a cell phone (yes, I know, a 9 year old is too young for a cell phone, but this gave her freedom) so she could go to the park with friends, ride her bike around the neighborhood, go to sports practices without us hovering, and sleep over at friends' houses.  Yes, we have to remind her to test and check that she has given herself enough insulin for the carbs.  We use the phone to text frequently.  She needs to text me her BG numbers when she's away from home.  I refuse to let diabetes control my daughter's life.  She controls her life...with her family's support.

At school she carries her monitor and fruit snacks with her.  She tests in class and gives herself snacks in class, as needed (she determines when she needs to test and snack).  Teachers are aware of what to do if she's acting strange (lows or highs).  So far so good (knock on wood)!

Now, I'm a teacher.  I see all kinds of kids.  Not all kids have the maturity to do what she does (she's not the most mature kid, but is very determined).  Not all or the parents are willing to relinquish control.  I do, however, believe that my daughter is a stronger and more confident child because of what she has been through.

Her 4th grade teacher said one day that Heather has actually made diabetes cool.  

But on the other hand, both Jenna  and cbarnhart need to realize that sometimes the school itself is not cooperative in allowing the child to manage it themselves. We are currently going through a battle with our school, because I want my 12 year old to be able to have his glucose monitor with him at all times, and to be able to treat lows as he needs to. Our school refuses to allow him to do that. The principal actually told me that she couldn't allow that because the lancets have the potential to be a "weapon."  They won't allow him to have snacks...if he feels low, he needs to go to the nurse to be checked and she will give him a snack. I think it's ridiculous for him to have to leave class and lose out on educational time for something he can manage easily on his own.

That's a great point SamsMama and the school is wrong.  A lancet is no more dangerous than a pencil.  

You may want to contact the American Diabetes Association  for their recommendation on handling this issue with your school.  There's absolutely no reason your child shouldn't be able to test, treat a low, and dose insulin at school.

In the future, I'd recommend not even talking with the principal about it.  It's better for your child just to mention to each teacher that he is diabetic at the beginning of term.  Then unobtrusively test or do whatever needs to be done in class.  I never had a teacher kick me out for that.  Frankly, most teachers use common sense, even when it may go against the school board's official policy.  

Good luck dealing with your son's school.    

SamsMama, I totally agree with you.  That is totally ridiculous.  What about having a 504 with those things written in?  Fortunately, I haven't had to battle with Heather's school.  I'm wonder if that will change in high school.  I will, however, fight tooth and nail for those things.  I feel it is VERY important for the kids to be able to test/snack in class.  A trip to the nurse is a half hour ordeal.  That is a lot of missed class time.  

Your principal is nuts.  A pencil or a compass (the kind used in math) can be used as weapons too!  Try to push the issue.  Ask the principal to use the lancet so she can see what it is like.  I wish you luck.  Please let me know if I can help you in any way (again, I'm a teacher...8th grade).  Maybe I could address some of the issues your issues from a classroom teacher's perspective with your principal.  I know that you don't know me at all and probably think I'm just nuts.  I just hate to see these diabetic kids having to leave class for no reason and would like to help.

Hello again,

Just a quick note as I mentioned to Jenna that my son has added issues such as ADHD and VERY mild asperger's so NOT every child is the same maturity at the same age.  My son is responsible for checking his sugars and taking his own snacks at school and calls me if he has a question.

The principal DID NOT want him to have his meter on him either ONLY in the office but this year I went in at the beginning of the school year and told her that if my son decides he no longer wants to have to go to the office to check his sugar than HE WILL carry his meter with him and too bad.

What everyone seems to not realize is with the ADHD my son forgets to tell me if there is an activity all day or the afternoon etc...and that I need to make adjustments for his insulin if he will be very active.  He also forgets to take the meter with him when off school grounds SO THIS IS WHERE I DO NEED HELP because with the ADHD and Aspergers's I have added challenges.

We live in Montreal, Quebec Canada where there is NO NURSE in the school except a quick visit once per week and there is no ADA/504 plan in effect here.  However, the school seems very responsible when it comes to kids with peanut allergies and for another kid in my son's class with another chronic issue she has much greater cooperation.

I am not asking for much...I am just asking to be kept inform when the daily schedule has a major adjustment so I can make my adjustments like sending extra snacks to school, reducing his insulin, etc...

Jodi, my daughter is almost 8 (will be 8 next month) and while yes she is fully capable of handling and managing her diabetes care most of the time she still needs help. Especially when she is low. When she is low, she is not able to fully care for herself. She needs help. Every child is different and there is no time frame in which I should hand over the management of her diabetes. Her doc says she will manage it when she is ready. If that isn't until she is 16, that is fine.  I do not think you are asking too much of the school. Stand your ground. AND why are 9 year olds walking off school grounds in the first place and IF there are children off school grounds why were the doors locked?

I would guess that your child is not yet nine years old.  As a teacher and mom of both adult and young children, I find that parents tend to overestimate the expectations of other pple's children when their children have not yet reached that age.  A nine yr. old is too young to be expected to be responsible for his own diabetes.  Of course, there are some who are very mature and capable, but many who are not.  Is their punishment to be death from diabetes bec. we want them to "grow up"?  I think not.  Each child is an individual with their own capabilities and needs.  It is our responsibility, as the adults, to assist them in growing at their own pace!

Jodi,

Wow you have a lot to deal with. I am sure some people don't mean to sound as bad as they do.  Just remember everyone has an opinion.  It is so hard and everyone is different with diabetes. Two of my children have type 1 diabetes.  When my daughter was in kindergarten her teacher gave her insulin because she was giving her a cupcake.  Well she forgot to give her a cupcake and left the room with two parents in charge. One of the parents meaning well did not let her eat it because she knew about her having diabetes.  When I picked her up she was pale and eyes glazed over.  Needless to say this was terrible and I hope no one else should go through this.  I heard similar comments just let it go the teachers have enough to deal with.  You shouldn't send your child to school if they need so much attention. Etc Etc.. but guess what I didn't listen to them she was on the news and the school changed how to treat children with diabetes.  Then she was on the news again for improving school practices.  Now there are six children in her school with diabetes.  Guess what they don't have to worry as much because the programs have been changed and are for everyone.

 My oldest is 15 he can not tell when his BG is low.  There are also adults who can not tell this it is called hypoglycemic unawareness.  That is why they need other people around.  I posted similiar info on another post.  There is Canadian Diabetes Association.  They have a safe at school program.  Hang in there remember to you are there for your child.  No one else will fight for them like you.  I wish you all the best and explain to the school if something happens to him at school they are held responsible.  Explain you are not trying to make life more difficult only easier for everyone.   See if he can test with supervision a couple of times a day. Maybe even go to PE class early to check his BG.  This way his teacher knows if he is in target and can help him adjust his workout schedule.  As for the other teacher statements about bathroom breaks.  Ask for a sit down meeting try to explain it if the teacher doesn't understand request a teacher that does.  

I am not saying that your son can't learn how to deal with diabetes because he can.  However everyone deals with it differently.  My son and daughter are totally different with Blood Glucose.  I asked the teacher you teach your class the same so does every student get an A in your class?  Of course the answer was no.  When I asked why she said well because every child learns differently.  I said exactly and every child with diabetes is different.  So please treat him as such.  Do not expect them to learn the same or act the same as any other child you have had that has type 1.  Just because people know or have type 1 does not mean everyone is the same.  Oh how I wish it could be treated like that.  Take this many units of novolog and this much of lantus and live a happy life.  It is not that way you can do the same thing everyday and BG are different everyday.

Sorry for my long post.  I hope this helps in some way.  My kids have had it for 5 years and some people still make the strangest comments.  

Good Luck

Penny

jennagrant, and I do mean this with kindness and no condescension, I truly hope you have smooth experiences as you deal with schools throughout your child's life.  Cavalierly disregarding a principal and deciding what your kid can and cannot bring to school seems like a fast road to suspension or expulsion.  No matter how much sense it makes to all of us that kids should carry meters and lancets and anything else to care for themselves, if a principal decides it's dangerous, your kid (if your kid were diabetic) could be out of school so fast it would make your head spin.  We cannot be doormats and let schools ignorantly tell us how to deal with our diabetic children, but you just cannot disregard the powers that be.  Something as innocent as a glucose tab can get students in trouble and lugging around a "drug offense."  At least in America it can.  You may have been lucky.  Yes, most teacher do use common sense.  But even when my son was 15, he had a SCIENCE teacher who was squeamish and didn't want my son testing in class.  The teacher was sending my newly diagnosed diabetic to the bathroom by himself to test when he was feeling low.  We put a stop to that really fast.  I'm digressing.  You're bold, I'll give you that.  But you'll learn a lot as your son gets older.

Jodi,  I hope things improve for you.  I, too, get frustrated with the administration at my daughter's school.  Her teacher is wonderful and very supportive.  Principal and vice principal?  Not so much.  Angie, I agree more with jennagrant on that aspect and would also make certain my child had the necessary tools to manage his diabetes.  Principals should NOT be allowed to compromise the medical safety of any child.  By not allowing them to have their meter or juice/candy close at hand, they potentially harm that child -- especially the child that does not feel a low.

You know what frustrates me?  Allergies are taken very seriously in the schools -- banning the allergens --  so these children will not have any health or safety issues at school.  Yet, school administrators refuse to acknowledge the dangers of diabetes.  Why is this?

Someone raised the issue that too much is expected of school staff.  The only thing I expect from school staff is a phone call when they think something is not right with my daughter.  I will deal with all the rest.  My daughter started on a pump last week.  She is still not confident enough to go through the steps of bolus-ing at snack and lunch.  (Personally, I suspect she doesn't quite trust the pump to give her the right amount of insulin.  After a year of injections, it is a bit odd for me to trust a little machine, too!)  I go in to supervise this for her, and her teacher is grateful that I do.  Administration?  I get dirty looks, some attempt to tear a strip off me, others bad-mouth me behind my back in front of children that are friends with my daughter.  How do you communicate with such a blatant lack of human decency?  

Sometimes so-called educators do the exact opposite of what they are supposed to do -- they close minds rather than open them.