Last Night I Cried....

rbergman
By rbergman Latest Reply 2011-04-25 10:21:47 -0500
Started 2009-02-13 10:59:55 -0600

Being a Diabetic I know the ins and outs and rights and wrongs and so on and so forth, when Laura was suspected as a Diabetic I sought help, when she was confirmed Diabetic I was sort of relieved that we had answers and sought out all the information ( a lot of that from all of you ) and set up all the necessary appointments and tests and meetings and so on. It was just the right thing to do. We are still waiting on some test results, have a meeting with the Dietitian on the 18th, also taking her to a Diabetes Training Course that day so both she and I learn all we can…so, I've done all I can so far right?? I thought so too, I was in control, I was the good mommy who was doing everything right, diet, exercise, medications, explaining things to her of the why's and why not's, got the school in on it and got them lined out on her meals at school, help my husband count the carbs and calories she gets and to pay attention to the portion size that coincides with those calories and carbs, helped her brother understand she isn't getting special attention because we love her more its because she has medical issues that if they go untreated she could die from it, so I've done all I can right??
Since our kids' school is only in session 4 days a week yesterday was their Valentines party, the teacher told the kids NOT to bring cupcakes or cookies or such, that instead she was asking parents for frozen yogurt and strawberries and banana's and the class would make smoothies (yes this was done for Laura's sake and I thought that was really sweet of the teacher). I too went to the school and helped with the process and counted the carbs and calories of what Laura was getting and the other kids loved the smoothies, the teacher gave all the students a package of bubble gum as the treat from her and she gave Laura sugar free gum. The room Aide gave all the kids a small bag of candy and she gave Laura a set of Locker Magnets instead of the candy. ( Again it was nice to see they were aware of her condition and the fact that yes she could have "real" candy in moderation but they chose to not tempt her with giving it to her.
Some of the kids did bring Valentines cards that had candy with them and Laura got those just as the rest of the class did, she told me she would just bring it home and give it to her dad and her brother and I told her that she could keep it she just couldn't sit down and eat it all up like most kids do. While the parties were going on in all the classrooms the secretary came across with the announcement of the students from each grade that qualified for the oral spelling bee ( On Monday they had to take a written test to see who the top 5 of each grade level were that would go on to the oral round). Laura was chosen from her class and her brother was chosen from his class. (YEAH MY KIDS!!!) After the party it was Parent/Teacher Conferences and no issues there as far as grades for either of our kids they both do great in school. Then came the 504 meeting. This is similar to an IEP meeting for children with disabilities to get the special care they need within a school setting, however the 504 is for kids with medical issues but not learning disabilities. ( I must say here, I do NOT like the idea of any child being "labeled" just so the school gets extra funding that may or may not be used in the care of that specific child…thats a whole other soap box for another time lol )
Anyway, at this meeting were the teachers, school nurse, me, Laura, the Superintendent and the Special Education Coordinator and the Principal. I had done everything I was asked to do for this meeting, medical records, instructions from the doctor, diet requirements, medication, etc. The meeting was going fine and then the SEC says to me…" We cannot possibly accomodate Laura's needs here at school we have no other Type 2 Diabetics here and its so different from the Type 1 kids that can take care of themselves it is impossible for us to change everything for 1 child." (This was the first statement of her little speech she had prepared)
OMFG!!! I tried to stay calm but the longer she talked the more pissed I got and finally I interrupted her and said " YOU are not only legally bound to accommodate my child but your morally ignorant about the whole thing if you think it would be a burden to YOU. My daughter is a 7yr old girl who didn't ask to have anything medically wrong with her whether it is her Thyroid or her Pancreas or any other organ that is affected, she has a right to come to school and get an education and if that means YOU have to change your "normal" routine to accommodate her then by God you will." (At this point Laura's teacher took Laura out of the room and off somewhere else so she didn't have to hear anymore). I whipped out the information the doctor had given us explaining the legal rights Laura has within a school setting and flung it across the table at this woman and said " Before you say any more I suggest you read this, and if that isn't good enough for you I will personally call every school board member, my congressman and an attorney that I'm sure would be happy to explain to you that just because you've never had to deal with a child with Type 2 Diabetes doesn't mean you don't have to do it." At this point the Superintendent who hadn't said a word the entire meeting said he thought it was time to take a 5 or 10 minute break, and we all got up and walked out of the room, I went outside and tried to calm down but it wasn't working very well, at this point a cigarette would have been nice but I was on school grounds so refrained lol. The school nurse and the super both came out where I was and both said they didn't understand why the SEC would have said that and apologized for her…I reminded them she is no child and she is the one that should apologize, not them and thanked them anyway but it meant nothing to me. After our "break" we went back in the SEC informs everyone that she called Laura's doctor in Rapid City and asked for more specific information on what she felt the school needed to do for Laura. While reading her "notes" of this information she said everything that was already outlined in the doctor's orders, (you all need to understand all it requires at school is that Laura's meals be within her carb range which the nurse takes care of that along with me by phone calls of what the school meal contains, what has to be cut out or reduced in portion and then I talk with Laura about it so she understands why …for instance yesterday was chili which was fine, but a huge cinnamon roll with tons of icing and a fruit sorbet that was 30g alone, were added to the lunch, so we had to cut the cinn. roll and the sorbet…) When she got to the medication schedule, come the 3rd week of medication she will need to take a pill at school with breakfast and in the 4th week 2 pills with breakfast, again the school nurse takes care of this. (Explanation: Laura takes a Thyroid pill at home and has to wait an hour to eat, she takes this pill at 6:30am and leaves on the bus for school at 6:50am, unless I were to get her up every morning at 4:30am there is no way to get the pill in her and feed her breakfast at home)
So anyway, long story short after another hour of this an agreement was made and Laura's 504 was set into motion. We came home and of course I was still pissed about the whole thing, when Dean (hubby) came in I told him all that had gone on and he wasn't the happiest camper either but I'm the aggressive and he is the passive in our family so it didn't seem to bother him like it did me, mainly because he knew I'd handled it and it was over…men!!! lol
Laura of course had questions about the part of the meeting she was at and asked why they said they couldn't help her at school and was upset so I calmly explained to her that the woman just didn't have all the information and that things were fine now. (Yea, I sugar coated it but I had to).
We had dinner and was watching TV when it was time for Laura to do her 2hr after meal BG. i watched as I always do and the meter beeped and on the screen were the letters HI…I have personally had reading over 400 and NEVER saw the letters HI on my meter, so I grabbed the manual to see what this meant, according to the book it said if the meter reads between 20-500, under 20 the letter LO come up over 500 the letters HI come up. It said if the person didn't show the proper symptoms for such a reading to retest, so that's what we did, in the meantime Laura is crying and dear ole hubby is in a panic waiting for me to read the book and after I read it I read it outloud to them. Ok so, we retested and it was 259 (still high but not HI thank God). So, after that was said and done and everyone here went to bed I was still upset myself, I did my bedtime reading and guess what I got …HI…oh great, so I retested myself only to get the same thing again, now of course I know my stress level was through the roof still and I attributed it all to that, I took my insulin and the extra I needed to bring it down and waited a couple hours and checked again and it was down in the low 200s.
Thinking about everything that has happened with Laura since last March when it all started I started crying, and I kept crying and I'm crying now writing all of this and it still makes me angry for what this woman not only said, but how it affected Laura, and how it affected MY BG as well, I know I shouldn't let some people's ignorance get to me but as I said in the beginning I had to do all the right things and take all the steps necessary for Laura's sake, why do other people think its ALL the parent's responsibility and nobody else's?
Also I found that I was so busy doing the right thing that I'm not sure until last night that it "sunk in" that my daughter has diabetes, I wasn't in denial but I was covering up my own emotions about it by staying busy to "fix" everyone else involved and fix Laura, she isn't broken, just a little more fragile now.

Sorry for the book but I just had to get it out.

Robin


18 replies

Yasmina
Yasmina 2011-04-25 10:21:47 -0500 Report

Good for you Mom! So many people don't get the big picture here when it comes to diabetes. Yes there is a difference from a type 1 to type 2, but not so much that there was an issue on how to handle it and make such a big fuss on them not being able to do what they need to. Ignorance on the part of a non-diabetic, but someone who has to deal with them in an everyday setting terrifies me' and angers me at the same time. I know I would have had a few words to say myself to her. You did all the right stuff and now maybe she can sit there with a little egg on her face and change her tactics and her manners! It was great of the other two to appologize, but you were right in the fact that she was the one that should have appologized to you for her ignorance and on how she handled the situation. Hope she has the courafge and the honesty to admit her mistake to you. Just knoe that there are those of us out here backing you up with moral support and friendship. Take care…by the way…everybody needs to vent a little or the stress of it all builds up and makes the BG go up too!

Two painful feet
Two painful feet 2009-02-13 22:06:50 -0600 Report

My sister was 6yrs old when she was diagnosed a brittle diabetic and needed insulin 3 times a day. When she started school in 1954. There was no Americans with disability act to protect her. My Mother had to fight the school distric to let her stay in public school. In those days they wanted ship disabled children off to seperate schools. I had contracted polio when I was 18 months old. So she had to fight for my rights to be taught in public school. They didn't want to see a child in school who wasn't perfect. My sister was in and out of the hospital most of her life. Mother had to fight for a home tutor. I was also in and out of the hospital. But they refused to get me a tutor. Anyway I'm proud of you for standing up to that uneducated sec. You are a strong person and I know you will be able to take care of your daughters medical needs and fight for her rights. The ADA law says She has every right to attend school and have her needs met. I will keep you and your family in my prayers.

Your Friend
JoAnna

Karmul
Karmul 2009-02-13 22:18:10 -0600 Report

Joanna, I read that and wanted to hug you. We had a wonderful girl in my class way back about the same time who also had polio…but she was not treated like you…I guess my school had a little more class. No PUN intended.
This girl was literally carried by young men who could lift her wheel chair and carry up and down the stairs of a three story school which of course had no elevator in those days. But these boys did not mind…sure they got to miss a few minutes of each class but mostly they all liked the girl and wanted to help her. She was one of the most adored girls in my school.
I lived in a very small town…maybe that was why…or maybe it was because I live in Texas and we got BIG hearts…whatever the reason I am so proud I lived where I did after reading what you went through. God Bless You…

rbergman
rbergman 2009-02-14 13:41:34 -0600 Report

As hard as it is on children today I cannot even imagine what it was like back then, I'm glad to see you and your sister made it through such harsh times…and harsh people.

Meridian - 26751
Meridian - 26751 2009-02-13 16:02:55 -0600 Report

I'll tell you what Robin, that poor excuse for a SEC wouldn't be employed long enough to have a second IEP meeting at any of the schools my handicapped daughter attended. We did have a run in with one in VA that was a recent college graduate who sounded just about as ignorant as the one you describe. Ours was the first and last IEP she ever was asked to attend. She was "let go."

rbergman
rbergman 2009-02-13 17:27:15 -0600 Report

I'm still going to the next school board meeting, they already had the one for this month but come March's meeting I'll be prepared.

rbergman
rbergman 2009-02-13 15:33:14 -0600 Report

In all my ranting and raving, I forgot to mention the high point of yesterday, Laura's Ped Endo said weigh her once a week to see how the diet plan is working, they only wanted her at the least to stop gaining or maintain, well surprise surprise, on the 30th at our PCP office she was 106.4, at the Ped Endo office on the 6th she was 107.3, yesterday she was 104.2!!! She was so excited (and so was I)! this was the same scale she weighed 106.4 at the PCP office, we have to be in town every Thursday for her dance practice so I figured that was a good day to swing by and have her jump on the scale each week. I'm very pleased that this is all working for her.
Also, tonight she increases her Metformin from 500mg a day to 1000mg, the belly trouble only lasted about 3 days (nights) on the 500mg so hoping the 1000mg doesn't make things worse for her, fingers crossed XX lol

Richard157
Richard157 2009-02-13 21:56:44 -0600 Report

Robin, I am very proud of you for how you have handled all this. You are your daughter's hero and under your good care she will have a good life ahead of her. My Mom did it fo me and you will do it for your daughter.

rbergman
rbergman 2009-02-13 15:06:25 -0600 Report

Thanks all, I appreciate your support, and yes, the papers the doctor gave me that I shoved across the table is what you described firefightermom, I seriously doubt if she even opened it to take a look before or after she called the doctor.

Thanks again for letting me get it all out, its so nice to be understood for a change!

2009-02-13 15:04:25 -0600 Report

Robin, good grief on the meeting wow. I would have reacted the same way and I have when my youngest was young. IEP meetings were necessary here because he was too intelligent for the regular class room so they put him in special ed… sigh Long story that I won't bore you with as he's in college now but I understand the ignorance in our schools… it's pathetic. Hang in there hon… you are doing everything right for Laura!!

*Judy

rbergman
rbergman 2009-02-13 21:21:32 -0600 Report

The old saying…Mother knows best…well I may not know best but I know better than they do at least and come hell or high water they'll learn!

Burke - 30425
Burke - 30425 2009-02-13 14:01:17 -0600 Report

Robin,I wish we all lived near you and could have gone en mass with you to your daughters school. How in the world these people are the ones educating our kids when they are such idiots. Keep your head up and just know you have many friends to get you through times like these.

jaclyncrystal
jaclyncrystal 2009-02-13 13:19:28 -0600 Report

All your reactions at the school were spot on, I and any mother would have reacted the same way, I agree you are a great advocate for this disease. It is the duty of all us parents to make sure our children, our most precious posessions are well taken care of. You earned the tears, but not the stress, the stress is usually unavoidable when dealing with difficult people and situations. I fight my stress every day, I am so very proud of you. Give that daughter of yours a great big hug and you deserve one too!! Way to go Mom. love jackie

firefightermom
firefightermom 2009-02-13 13:51:37 -0600 Report

hey.I had to break out the Bill of Rights at our 504 meeting you can get it at www.childrenwithdiabetes.com hope it helps. One day we had a teacher say "you don't need to go to the nurse you should't go low today" so just try to remember people (some of them) don't understand but ignorance to it isn't acceptable when they have our kids for the day. This my my fav. part of the bill Since there is no break from diabetes, there can be no break from the need to care for it, time spent at school is NO exception..Hope you have a better week.my daughter has type one she is ten.

Karmul
Karmul 2009-02-13 12:44:51 -0600 Report

I think you had every right to be angry..this is your baby and that SEC person was ignorant as heck…not only about the disease but about having any discussion in front of the child.
I find more fault with the person discussing it in front of your daughter more than I do her not being informed about the disease.
Too…maybe if we all took the time to learn a little more about it, there would not be so many NEW cases of diabetes each year. At least maybe there would be no epidemic.
I better stop now or I'll be on my soapbox…LOL

2009-02-13 13:30:24 -0600 Report

I am so sorry for you; I know what it is like to have a disablity that involves help from others; including teachers and nurses. It is a crime how they treat you. Especially when you deal with so much yourself. It is cruel and inhuman treatment. I know, I have been there for various reasons.
Stay strong and vigilante; you are a good mother who loves and cares for both of your children, and when the going gets rough and you have to cry or act out. Grab a pillow and beat on it. Get some f the penned up frustration out.\
Claudia

highlandcitygirl
highlandcitygirl 2009-02-13 11:20:57 -0600 Report

i am so sorry that you and your daughter had to go through this, thank GOD you are able to hold your own with the ignorant of this world. talk about some people needing an education! hun, i pray that you hve the LORDS peace in your life, you will need it with remarks like those! it okay to cry, i do. i wanted to jump in and defend your daughter myself when i read this!

Gabby
GabbyPA 2009-02-13 11:13:02 -0600 Report

You would think that with the way it is in the news so much and how so many children are facing Type 2 that they would welcome the opportunity to learn. OMG, that is horrible. And I know how you feel and at least you can get your point across.

The US is so behind in the public education of this diseaase. It is unbelievable that they acted that way. You know there are other children there who have it, but just don't know it becaues thier parents are not educated in seeing the symptoms.

You are going to be a great advocate for those other children that don't know they need a voice yet. I am sorry for the stress it caused you all, but it will also ignite a fire in your hearts to be the educators of an entire school system. That is taking a bad situation and turning it into an inspiration. Think of it that way and redirect that passion into a program. You are the perfect person to do that.