Am I a parent who is selfish?

[hallenbeckfamily]

I had a meeting at school today that I called regarding several issues-just me and principal. Something came up and they brought one of the office ladies in to clarify a few things. First she said she felt I was never available for them if they needed me. Sometimes I am fifteen min away in town doing errands. The other lady that used to be there always told me go on with my day he isn't gonna die from a hi bg in 15 min waiting for a shot. I have errands to do and such in town. I have even left my full shopping cart full of food if the school called and headed back if Chris was having a behavior prob. My thing is that D has taken over my life. I wait for that phone call all day even if it doesn't come. My anxiety level was thru roof with anxiety attacks and such. I finally just went on meds cause I could never relax from life with D. It was running my every move all day. I waited till first bg chk at 10 then ran to town then to school for shot at 12 left school sometimes right away and sometimes 12:30 or 1 finished my errands or tried too casue I might get called back for afternoon hi and behavior prob. D is always there, I never get away even when the phn don't ring. The medical staff told me don't let it run your life,go on with your day as if D don't exist. If D comes calling it will wait a few min for you to get there. So why do they people make me feel so awful for not being there 2 seconds after I am called?
Also they told me they felt I was not following the rules and overriding them. Say Chris was 178 wich called for a 7-9 carb snack and he wanted yogurt at 10 am. She called me and said what he wanted and he said he could get a shot and have it. I said thats how we do it at home and it not like hes asking for a candy bar,its yogurt. I am home I will come give a shot. Dr. agreed,thats how we do it at home so school should be consitant. She said he was manipulating me and that I violated the protocal. Umm the protocal is for them to know what to do. I ALready know what to do so I can make changes as I need too on a case by case basis. She said she was not comfortable with me not following the protocal and asking her to make changes. I am not ashamed to admit that I told her that most kids don't have to measure their morning snack and base it on carb intake and bg level. SO if he wants a god dam yogurt and I am home I will come give a shot for it. Thats how it works at home. I set a basic carb to bg snack ratio because she is not comfortable making choices as to what he needs. I label everything as to bg 120-175 give 7-9 carbs but push free foods or bg 120-150 give 12 carbs whatever it maybe I have every snack labeled with instuctions. But it CAN and DOES vary depending on situation. But if I have a situation where bg is 120 and protocol says 120-150 give 10 carbs. But its morning and he's going to recess and he goes low after recess and its 2 hrs till lunch I might tell her to give 5 extra carbs. She doesn't feel confortable with me altering the protocal I wrote because a situation occured and making a case by case chage with verbal appoval,my approval? If it was lunch time that would be fine. But the protocal is a guidline and I can make momentary changes on a case by case basis as I see fit. i know my child I WROTE the dang protocal. Am I wrong? SERIOUSLY Am I wrong? And I am always there when needed,sometimes it may take a few mins to get there,but I always come running. That comment made me upset,Maybe I am soo stressed I can't see my selfishness, Input please. I always appreciate the otherside of what I maybe can't see. Thx~Jennifer

[Mama Belle]

First of all, as long as you are the one giving the shot, she should keep her stupid mouth shut. I understand the need for nurses to follow orders, it protects them from liability issues. Our nurse if very strict about following protocol. BUT ... when I am on school grounds and have assumed control over Samantha's care she always yields to my decisions. She has to. I am the parent, exercising care for my child. If I was the one asking her to give the injection or treat a BG in a different way than protocol specifies,t hen I could maybe see a little bit of a point. But you are the one going to the school to treat!!!

Second, it is not their job to tell you that you aren't available. It is there job to take care of your kid during school hours. They have a school nurse for a reason. There are lots of parents who have jobs that won't allow them to drop everything and drive across town to treat their kids. Those nurses manage the treatment completely. In theory, these nurses should be trained so that they are prepared to treat kids in any given scenario. I know that D isn't overly conducive to this, though and it is unrealistic to think that a nurse who hasn't lived with D can make the kind of judgment calls we make every day as parents. But they have to realize that you are being of huge help to them by being as present as you are.

There have been many times when the nurse just wasn't at school when she should have been. I came down to give a shot and when the nurse found out she apologized profusely saying that I shouldn't be required to leave work to come take care of my daughter, the district is supposed to provide this care for her during school hours. I don't know if your district is the same, but it sounds like they are not taking enough responsibility and they are trying to pass the buck and blame the mom.

I am soooo sorry that you are dealing with this, Jennifer! :mad:

[hallenbeckfamily]

Ohh THANK YOU Mama Belle! I was made to feel so horrible because I went on with my day and didn't let D run it. That I should always be seconds away. Trying to do that would kill me,I selfishly need a break SOMETIME. Thank you for your feedback,Thank you very much! Jennifer

[Treysmom]

No way you are not being selfish. I can see why you go to the school to take care of Chris, there doesnt seem to be anyone with any sense there.

It is a shame they are trying to put blame on you. They should be required to have a competent nurse there to take care of Chris. His drs orders not some nurse wanna be.

Thank Goodness summer is coming! You guys need a break.

[hallenbeckfamily]

I do in all fairness want to add that the school nurse manages the whole dist. And she tries her very best to be available. She also works out of the community health center so some days are better than others. Thx Jennifer

[deafmack]

this nurse obviously doesn't understand the unpredictableness of Diabetes. The care protocol is not set in stone. You have to adjust it to meet your child's needs at that specific time. Also to try and lay the blame on your doorstep is so unfair. You are the parent and have been doing this for a long time. Fine if she has questions but she needs to stop blaming you. You have done nothing wrong. She cannot expect you to just sit by the phone all day. That is unrealistic. My nephew has life threatening seizures and even I do not put my life on hold. I carry a sidekick with me and the school can reach me if they need to. They understand I am not going to sit by and wait for the phone to ring just because. You stick to your way of doing things. You are doing fine. The nurse needs to rethink her attitude.

[caspi]

You are SO NOT SELFISH!!!!! I am shocked that this school is doing this to you. I believe you once said it is a public school, right? They have to take care of him, even if it means they need to hire a full time nurse for that particular school. Granted, you are more than willing to come in and take care of him yourself so they should be grateful for that and give you some slack if you can't immediately appear when they call you!

And as for the protocol -- that is just a bunch of baloney what they're saying to you and they're giving you a hard time unnecessarily. OF COURSE things are going to change! However, if this is how they're going to be, when you make a change, however slight it may be, PUT IT IN WRITING AS AN ADDENDUM. This way they can't say you're not following protocol.

I would seriously consider requesting a meeting with the Superintendent of Schools. This is absolutely ridiculous the way they are treating you!!!

[Kaylee's Mommy]

Ok... I am literally fumming over your post.. How DARE this school tell you that you aren't available to them.. are you employed by them? NO.. WHY aren't THEY doing Chris's injections? are they refusing?? I would have bit back on this one..I would have left there with steam coming from my head.. you are NOT shelfish.. D changes every day.. its not a straight answer.. you are totally correct on every single point.. I'd rewrite his 504plan today and add every little thing you just said.. if they can't waver a bit without it written down for them, I'd make sure its written down:)

is he going to be at ths school again next year?

I still don't understand why they aren't doing his shots.. (unless of course, you don't trust them to do them;) ) While he is in their school its THERE responsibility to make sure they are doing correct by him.. NOT YOURS.. you shouldn't have to be running to that school multiple times a day to give injections..

ugh, I'm so angry for you!

[Ellen]

My thing is that D has taken over my life. I wait for that phone call all day even if it doesn't come. My anxiety level was thru roof with anxiety attacks and such. I finally just went on meds cause I could never relax from life with D. It was running my every move all day. I waited till first bg chk at 10 then ran to town then to school for shot at 12 left school sometimes right away and sometimes 12:30 or 1 finished my errands or tried too casue I might get called back for afternoon hi and behavior prob. D is always there, I never get away even when the phn don't ring. The medical staff told me don't let it run your life,go on with your day as if D don't exist. If D comes calling it will wait a few min for you to get there. So why do they people make me feel so awful for not being there 2 seconds after I am called?


Jennifer,

You are a loving mother and trying very hard to make life normal for your child. You are to be honored and respected for your efforts. You have been very honest above regarding your emotional pain. ((HUGS)). I knew that pain intimately after my son was diagnosed and for several years thereafter. I sought support and it was transformational. I still attend diabetes support groups 18 years after my son was diagnosed. It's an ongoing learning process.

Kudos to you for recognizing and acknowledging the level of anxiety you feel with respect to your child's diagnosis of diabetes, and how difficult it feels to not have control over everything that takes place at school. Please consider that it may be difficult for you to calmly convey your loving intentions and knowledge to the school personnel when you feel filled with anxiety.

Is your medication working? Was it prescribed by a psychiatrist or psychopharmacologist? In my opinion, these types of medications should be prescribed by people who specialize in this area. While medication may relieve some of the symptoms, it does not help with examining and changing the automatic thought process that follows the triggers into feeling anxious, and how you react once the anxiety level rises. (see CBT (http://en.wikipedia.org/wiki/Cognitive_behavior_therapy)) How do you feel about seeing a skilled social worker or therapist to help you with the anxiety and possible depression?

You have also mentioned your child's behavior problems in school. Are you working with a school social worker or child behavior specialist? Has a behavior plan been established which will reward positive behavior? For example: token economies (http://wik.ed.uiuc.edu/index.php/Token_economy) can work well for young children to get them to stay on task and feel good about adhering to a plan that is custom tailored with positive rewards for staying on task, while also establishing clear boundaries for behaviors that are inappropriate.

Is there any way to simplify the snack protocol so it's easier for school personnel to follow? This may make it easier for your child too if he has less choices. Know that things are different at school than at home. If there's a way you can simplify it, it may make things run smoother for your child all day. How many times per day are you going to the school now? Is it possible that he has a more difficult time staying on task by having to go to the office frequently, choosing what to eat, having you come to give him injections? Do you feel there may be a different insulin plan that could be tried in order to help things go smoother for him, and at the same time provide you with the freedom to do the "mom" things you need to do around town, running errands, meeting a friend for coffee etc.?


Ellen

[mischloss]

They have a school nurse for a reason. There are lots of parents who have jobs that won't allow them to drop everything and drive across town to treat their kids. Those nurses manage the treatment completely.

I will be working 14 miles away from school now. When I was off I was able to "drop in" if called like they ran out of test strips or something. My son is pumping so it is not that complicated now for the nurses. Site change is still a "no go" with the clinic personnel, they just look at the inset like it is an alien object and make with the "deer in the headlights look". I swear when I demonstrated a couple of weeks ago (site came lose during school hours), the lady actually cringed when I showed her the tip that goes into my son. A lot of good she would do during an emergency, I thought to myself. :(

But honestly, you are not at their beck and call!!! They have to be able to give a shot to a child, if they are nurses or nurses aids in the school clinic. That should be basic training.

You were right...they were wrong for making you feel like you are not doing your job being a good Mom. Shame on them. Do you have a 504 plan in place? If you don't, I would seriously consider writing all the protocols down and having them sign off on it.

Hope this helps!
Maria

[sparkyjt]

I couldn't imagine if I had to go to the school to do shots everyday! How do working mothers do that? I work in a different town. Our school nurse gives the shots. If numbers are weird or something comes up she always calls to get my opinion before she does something especially if it doesn't agree with what the protocol says. Most of the time though she goes by what the doctors orders are that were faxed in. We've had a few episodes where Reese's correction factor changed or dosage changed and the clinic hadn't faxed that in yet. That kind of thing is a PITA since she says she has to follow orders and the orders are wrong.
I don't understand why you have to go there to give shots. Why doesn't the nurse do it?

[hold48398]

OMG Jennifer, that is horrible!!! I'm so sorry you have to deal with such ignorant people. You are doing a FANTASTIC job for your son! Don't ever doubt yourself because of what someone else says to you!!! I am steaming for you...arrrrg!! I too think it is unreasonable that you have to do the shots. That's the first thing I would try to address. Also, does Chris's schedule change on a daily basis? I demanded that Mia's schedule stays the same every day, so I can try to predict what her BG will do with recess or PE or other activities that might affect her. Thankfully, our school nurse is really great and knows that we may have to make adjustments on the go.

I really hope you can get this sorted out.

[Megans Dad]

This is the reason my wife doesn't work, we don't have nurses here in Canada, at least not in Manitoba and parents are the only ones who can give insulin. The only consolation is we live 300 metres from the school and my wife does work for 1 hour a day at the school lunch program so that allows us to have hands on for any concerns regarding adjusting basal rates and or bolus's depending on conditions.

[liasmommy2000]

(((HUGS))), no you are NOT selfish. That's crazy that the lady thinks you are unavailable.

Is this a public school? If it's a public school then even if they don't have a nurse, they should be giving the shots if needed. The only reason they wouldn't have to I believe is if there is a state law saying that only nurses or health aides can give them. Otherwise they should be doing it. However you may have to have a 504 in place before they will do so. My dd attends a public school with no nurse, no health aides etc. There are six schools in the district and no health staff at all! But they do it all. Blood checks, insulin shots, carb counting, ketone testing etc. And we don't even have a 504 in place yet (will have an IEP next week). So if it's a public school, don't let them tell you they can't/won't do it. That's ridiculous making you run up there every time he needs something. Now if you don't mind, then that's fine, though I would consider that even though they have to do some things in a 504, I personally feel we as parents should be doing our best to make things as easy on the school as possible WHILE keeping our children safe and healthy. A balance so to speak.

I have to say, it may be a bit of a pain for them to call you at snack time, adjust his snack, have you come up and get a shot. If it's working then great, but please don't take this the wrong way, but perhaps it would be easier on everyone if you adjusted his insulin and/or snacks so he doesn't need a shot? I agree with Ellen, maybe it's a distraction all around for everyone to have it vary everyday? We used to have Lia going to the office before every birthday snack to check her blood, figure out how many carbs the snack was and get a shot. She was missing out on the social aspect of the birthday snack time and it was a pain for everyone. We changed it so I have sent in a baggies of, well, not low carb, but LOWER carb snacks (versus a cupcake with frosting, giant cookies etc) and now she just eats that and we deal with any highs two hours later when I pick her up. It's not often and it's SO much easier for everyone. Lia doesn't mind as now she gets that snack AND brings home the birthday snack to eat after dinner. Two for one lol. Just a thought. I hope I don't offend and you get what I'm trying to say.

[Boo]

Jennifer,
((HUGS)) Take a deep breath and calm down. It has been a tough year for you and Christopher, and I commend you for working so hard to keep him healthy.

The incredible amount of variables is what makes diabetes control so difficult. My son is at the age where he is starting to spend more time away from me. Occasionally, well-intentioned parents will ask what needs to be done for him while he is at their house. Usually, I'll start to explain, and after a lot of, "well if this happens...do this, but if his number is high, do this, but if his number is low, do this...but not if he has had a lot of activity..." (you get my drift). I almost always end up saying, "just have him call me". I'm so thankful that he is old enough now that I can talk on the phone with him, come to a mutual agreement on what needs to be done based on the numbers, etc. I am trusting him more and more to make his own decisions.

I just got a similar call from our school nurse yesterday asking if I was okay with him making changes to his pump (temporary basals, etc.). She was a little uncomfortable with the fact that these things aren't written down, but there is just NO WAY that you can write out all of the instructions for all of the possible scenarios.

Unfortunately, your son is not old enough yet to make his own decisions. I agree with the other posters who suggest making snack time simpler. Is he on lantus/humalog? Does he get a shot with lunch? Does he get one with his snack? If he is on lantus/Humalog, is a snack even necessary? I almost hate to suggest this, because many people bash it, but maybe you'd want to consider NPH so that he woudn't need a regular shot at school. We went that route for almost 3 years.

I'll bet you'll be happy when school is out for the summer! ;) Hang in there.

[hallenbeckfamily]

Ok,First yes we have a 504 plan. Second I insisted yesterday on a IEP for other health impairment-the ADHD. My 8 yr old has had a IEP since starting school. And they offer alot more protection to Chris. They have diff ideas and plans for beahior issues (my 8 yr old had major behavior probs in kintergarden) they just help them more. SO they are setting up IEP. Umm also I,while not working,choose to give the inj at this point. That is why they made me soo mad and hurt and made to feel selfish. I AM helping them out by being readily available to be at school. I am sorry if it takes 15 to get there. But I swear I was at the point D totally consumed me do to the school issues during the day. I have never felt soo sick with stress and I started having anxiety attacks which is why I went on Paxil. I felt I was being a horrible mom. I was soo stressed all the time,starting to yell and easily lose my temper ( no, not beat my kids or anything we rarely even spank) I was sleeping horrible and was starting to wish everyone would just leave me alone.Even letting kids play more video games just cause they were quiet. So it was time for meds to help me be the mom I usually am. I have gone to therapy before,if I had anytime or abilty to plan appts during the day I would for sure find a therapist. Also the financial prob of going to thereapy. I think I am gonna have Chris see the Psychologist the Dr reccommended. He rasied 5 boys with ADHD and sounds very qualified. I have had BAD exp with thereapist before so I admit I am nervous to send him to one,but I love the Dr so I will trust his judgement.
Untill 3 days ago I usually gave shot AFTER lunch. Chris is a very unpredicatable eater,picky. He doesn't always finish his lunch at school and at home he can take 30-45 min to eat. So CDE said to keep shots after. But, He goes hi every afternoon,and had probs due to the hi. Despite what the school thinks I KNOW its bg releated. WHY you ask? cause when I go in and correct the bg the prob is gone. Seriously,how do they not get that. Anyway first 2 days we did stop the hi. Today he was still hi-422 at 1:30. We will keep trying this to calm the afternoon down. I just have to alwasy alert EVERYONE when he gets shot b4 so they can pay closer attention to signs of a low if he didn't finish lunch. And I have been taking out a 1/2 unit at inj. Say his lunch is 40 carbs,that would be 2 units. Due to not finishing lunch most days I give 1 1/2. Need to test this further to see results we can go on.
Um what else?? He is on Novolog and Lantus. And we have been discussing the pump.
Thx to all of you for your replies. Means the world to me. I was feeling so awful and VERY selfish cause I did not want to sit at school all day. I felt my mental state could not take it,so I felt selfish. I am glad you all agree I should go about my day, I DO have my cell always.
And the protocal, again thx!! I feel that I am the one who wrote it so since I know my child best,if I need to make a adj the WHO CARES. I KNOW MY KID!! ANd I am there to assume to responsibilty. The yogurt thing was the first time I went and gave a extra shot for a snack. I was-to be honest- proud of him. He knew to eat certain foods he needed a shot. I personally think its a huge part of D management and learning to care for yourself. I lft message with nurse today to add to the 504. As you all have said like admendments. For instance- Mom may excercise her right to make adj to the snack protocal as needed,on a case by case basis. And yes, I talked with CDE to simpify the protocal. The reason it got soo detailed was that the lady in the office (one that does bg chks) said if I didn't spell out for her how many carbs to give, when and what and label all snack (like cheese and cracker -sticker says total carb amout and give for bg 110-160 or something like that) So anyway we,ME labeled all snacks so she has a idea what and when to give. But it has gotten so fricken complicated!! ANd I feel like they are daily picking apart everything that happens. Smallest stupidest things like giving stars,said they are worried they will forget,so positive behavior is noticed one day and not the next.
And NOOO I do not believe he will go to this school next yr. The lady that took SUPER care of him is at the other elem 5 min other direction. I think he will go there. Thx for putting up with me and my LONG posts~Jennifer

[Ivan's Mum]

Hi ya, I remember that our boys are around the same age so here's what I do in the day. Granted Ivan doesn't have the behaviour problems (not often anyhow:p )

Have a cell phone, school can call me whenever.
I send Ivan with his injection pen and the school call me when he's high and I tell them what dose to give him, they dial it and he injects himself.

If your son isn't keen on injecting himself, try to reason that he can then eat his requests and isn't relying on you being available to drop everything to get there. Often when they've done it once, it's not such a problem. It's overcoming that first battle. In the states are your nurses real nurses? maybe they'll inject him for you.

Ivan's school phones just about every day re a high or low, maybe 1 in 10 times I go up (usually because I'm passing by). I took a leap of faith that they could deal with it between them all and they do.

Reclaim some of your freedom, this will kill you if you don't and then you'll be no use to him. A mother who is cracking up from the stress is no use to anyone and your family is larger than your D son. I know that may sound cruel but it's true. Take a big step back and ask yourself what others can do to pitch in. If that means your son takes time to learn about it, or your other child learns how to inject his brother so you're not on call 24/7 then so be it.

The other thing I have just started on is a pump. The plan is that when the rates are all sorted, he's going to be even more independent. I know it's hard with his other issues but don't rule out that you have to give up some of the control. We mothers are control freeks.

Stop, take a breath, and decide what it is YOU need, then figure out how to get it. :cwds:

[WestinsMom]

Exactly why I started homeschooling...being harrassed by the school! Don't give in, but realize they will treat you as bad as you let them treat you. I know a mom that went in everyday for injections until she put her foot down. Kind of like my husband, so many thing he "can't" do until he HAS to! :)

[Tamara Gamble]

Jennifer, you are not a bad mom. The stress that the school is causing you is needless. They can make life with D excruciating can't they. I remember Ty's pump breaking and getting a call. It takes me fifteen minutes to get there and five to get everything together. I showed up twenty minutes later and Ty, his principle and staff jumped down my throat. At first I thought they were kidding. It was not an emergency, I live fifteen minutes away and took five to make sure that I had everything. I basicaly told them to sit down and listen. I explained to them what I just told you and guess what, they did it to me again the next time they needed me. I was in the shower the second time and didn't even take the time to dry off.

I told all of them as I gave the mom look to my son who seemed to be the loudest that I could not preform magic and if they were going to jump down my throat about it I would get in the jacuzzi next time ignore the phone and let them handle it. End of discussion. Never happened again. Imagine that.

No you are not selfish. You are a good mother. That is why everyone expects you to preform miracles on a regular basis because you are so hard on yourself. The bar is so high there is no place to go but down. Lower the bar for yourself and raise it for the school. I don't think that your son should have to eat the same thing every day to make it easier for them. Your job is to worry about him and his well being. They need to get their act together.

By setting the bar a little higher for them one step at a time they will be forced to learn. They won't do it right all of the time, they will second guess themselves and they will call, but they will learn. Be very clear that I am not saying you should risk your childs life by any means. I'm just saying that they need to do more and you less or this disease will consume you.

Tami

[hold48398]

No you are not selfish. You are a good mother. That is why everyone expects you to preform miracles on a regular basis because you are so hard on yourself. The bar is so high there is no place to go but down. Lower the bar for yourself and raise it for the school. Tami


I love this quote! It is sooo true. My husband has the same problem at his work. Can I send him to you for treatment, Tami?!!:rolleyes:

[caspi]

Excellent post, Tami! I couldn't have said it better myself!

[Tamara Gamble]

I am currently not accepting applications for therapy for anyone's husband. That spot has been filled by my beloved Ron. LOL!

Tami