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April 4, 2002
Editorial from The Boca News
            As grandparents, we are outraged with the conduct of an assistant principal at a Boca Raton middle school.

Our granddaughter has juvenile diabetes and wears an insulin pump attached to her body via a catheter tube connected to a monitor that contains a vial of insulin.  The monitor is visibly attached to her pocket with a clip.

           During lunch the principal spotted the monitor, which she thought was a "beeper," and demanded possession of it.  Our granddaughter tried to explain that it wasn’t a beeper and showed how it attached to her body, but the principal didn’t want to “hear her attitude” and actually tried to pull it from her body.  Our granddaughter had no choice but to disconnect the insulin pump from her body and gave it to the principal, who in turn gave it to the security guard. 

           A diabetic’s life is dependent on a strict chemical balance in the body, and this woman took away our granddaughter's lifeline because her authoritative ego wouldn’t listen to a child.  Living with Juvenile diabetes on a daily basis is trauma enough, let alone being supervised by an adult who enjoys her authority more than protecting those she watches over.

April 9, 2001
TO: Ira Margulies, Principal, Eagles Landing Middle School

The news of the assault on a minor in your care by a member of your 
staff has brought shame on your school across the country. This 
incident cannot be reduced to a mere misunderstanding. Confusing an 
insulin pump for a beeper is a misunderstanding. However, refusing to 
hear the truth when it is offered is arrogance, and ignoring evidence 
such as a Medic Alert bracelet is negligence. Attempting to take the 
medical device by force is nothing less than assault.

As school officials you are responsible for the well being of the minors 
in your care. The degree of disrespect for the student, and disregard of 
essential information offered by the student suggests that the Assistant 
Principal involved should not be entrusted with the care of our 
society's children.

Great harm can be done when arrogance and disrespect take the place of 
listening and good judgement.

Randall S. Leberknight
leberknight@earthlink.net
106 Glen Eyrie Ave
San Jose CA 95125

April 5, 2002
My son is 7 years and he attends Timber Trace Elementary. He is also newly diagnosed Type 1 Diabetic. This June, it will be a year. It started out as an asthma attack (which he never had before) and ended up with a diabetes diagnoses. So far, the only complaint i have is with the field trips the students take. My son informed me that he didn't take his glucometer with him and did not get to eat his mid-morning snack before lunch. It was very disconcerning.

M.W.

April 5, 2001

I live in Knoxville, Tennessee. My daughter has Type 1 diabetes. She was diagnosed at age 9 in the fourth grade. We did not have any problems while she was in Elementary School with her being able to care for her diabetes at school. She was the 1st case in this school and we could not have asked for better school personnel. When she got to middle school, 6th grade, everything changed. 

We had a teacher in 6th grade ask her for an assignment that was due when she went by school to pick up missed assignments from being in the hospital for 3days with ketosis. His response was she could have finished it while lying in the hospital. She got her pump over Christmas break her 7th grade year same school and faculty. We had her 504 updated with the information regarding the pump. The next year, she was pulled in front of the cafeteria by a HEALTH teacher. He was demanding her "beeper". She told him it was not a beeper it was her insulin pump. He demanded again and she refused again. He reached for the pump, she placed her hand over her pump and said very adamently "NO! IT IS MY INSULIN PUMP!" The other students were all yelling at the teacher at the same time telling him what it was. Something final got through his thick skull and he dropped it and sent her back to her seat. 

We still use this story as an example at every 504 meeting we do as well as the school nurse who was livid and chewed him out when she was told. We are lucking in the respect that our school nurse is a Type 1 diabetic since age 9 on an insulin pump but she is not in the school everyday. My daughter is now a sophomore in high school and we are still educating teachers every year at our 504 meeting. We need to find some way to educate our school systems through out the country without the loss of a student's life. School systems have to be more responsible for the actions of their teachers and administrators.   -K.W.

April 4, 2002
My daughter is 13 years old but at the time of the story she was in fourth grade in a Palm Beach County school. She has been diabetic since she was 4. Like so many other parents, I too had a 504 medical plan at Chelsea's school which did no good for her. Chelsea was not on the pump yet and took 4 shots a day and was still up and down and seizures in the middle of the night and low blood sugar reactions, etc. I had talked with her teacher and had a meeting with some school staff to go over the whole 504 plan and thought they knew the importance and danger of what could happen and what to look out for. Boy was I wrong!!

I worked 5 minutes from Chelsea's school (on purpose) and one morning I got a call from some one in the clinic ( a stand in Mom, I think) and she told me that my daughter was in there and that she was crying and will not talk. I said I would be right there and that she most likely was having a low Blood Glucose reaction. I asked her if some one could please go and get her lunch box or some juice, and she said she would see if she could send some one. I grabbed some juice from work and took off, on the way (running the red light) 

I called the school and asked if anyone had gotten her a snack or her lunch box and she said not yet, I arrived at the school and ran to the clinic, my daughter was starting to jerk like they do when they are so low, I gave her the juice and made sure she was able to sit up and I ran to her class to get her lunch box that no one ever went to get. 

The teacher told me that she just figured Chelsea did not know how to do the work and thought  she wanted to go to the clinic at the time to get out of work.  I was in a hurry to get back to Chelsea. I ended up taking Chelsea back to work with me and sat her on a stool and was talking to her and noticed under her bangs, was a giant bruised bump, I questioned her and found out that she was made to go to the clinic with another boy student and her blood sugar was so low that she kept falling down. She then showed me her knees and they to was scrapped and bruised. I asked where the boy was and she said way up ahead. She finally made it to the office (where the clinic had been as the school was under construction) and the lady told Chelsea "your in the wrong place, go to the clinic" again they sent her out alone!!

I called the teacher and she said she just thought Chelsea was not doing her work. One of Chelsea's friends had to notify the teacher because Chelsea was so weak.  I was angry and said that Chelsea was a good student and she has never just not done her work and explained that this was one of the low sugar signs. 

The next day I wrote the teacher a letter with all the possible problems that could arise....and never received a reply!! My husband told our neighbor about this and he is a child advocate (along with many other things) and took it upon himself to call the school. A week later, Mrs. Gregory (principal at the time) called me because our lawyer called our neighbor. Before that,  the incidence was never brought to her attention. When she thought they might get sued, she became very concerned and called a meeting with the teacher, the after school care staff, and us. Again, we went over what had been discussed prior to this incident. Maybe it was due to the fear of being sued, but they now finally listened.  

We did not sue them (we should have), but I do not feel any more confident today then I did then, if not-worse! Chelsea is now in middle school and God forbid if anything should happen there, none of the teachers even want to know their names,  let alone their medical problems! 

Like Nikki, Chelsea had a similar experience with a teacher that knew her well and was just being a jerk in the cafeteria. They were in line to eat and Mrs. Smith said really loud " Girl- why do you have that beeper?" Chelsea was devastated!! Everyone was looking at her and that is the worse thing that could happen to a young girl!!!!! She doesn't even want anyone to know she has a pump and tried to hide it all the time!! We've seen Nikki in the paper and my daughter was impressed that she took her picture showing her pump! I told Chelsea that Nikki looked like a pretty girl and that she didn't seem to mind anyone seeing her pump and we looked at how she was wearing it and Chelsea got up this morning put her pump in the top of her pants and did not wear a jacket today (first time all year!).

 Please Tell Nikki we said Thank You for this, it may seem small to some but it means the world to us!!! 

Please let us know what we can do to help.

Kathy

Sara had a very similar experience. (referring to Nikki Wagner's recent story "EDUCATE THE EDUCATORS"). At the beginning of every school year I send a typed letter to every school administrator, teacher, secretary and nurses concerning Sara's health and the pump. It includes details they do not need to know, but I include these for those few teachers you will run into who wish to really know their students.

The principal at her middle school stopped her in the hallway one day and told
her that her phone was not allowed at school and to give it to him. Sara told him it was her insulin pump and not a phone. She even had to showed him her insertion site.
This person had letters from both the nurse and me concerning the pump. These
letters even included statements that it looks like a phone or beeper. He did
not bother to read the letters.

I then wondered how many other students are in his school with potentially
life threatening health problems that he has not read the appropriate memos.
Even this year as Sara became a high school student we had one teacher who was just too rigid in every manner to deal with. We finally pulled Sara from her
class last week.

At the first parent conference in the fall her first words to me were "I was
going to call you earlier this year and ask you to get up each morning and
feed Sara at home before she came to school. Then I was told she was on the
swim team and had practice at 5:30AM and was eating after that. I then was
going to ask you to tell her to eat what she could in the hallway between the
end of practice and getting to my class. Then I was told she is Diabetic and
has to eat. I will allow her to eat her breakfast because she is Diabetic, but
she needs to do it within the first 5 minutes of class." Our mouths dropped
open and as parents we both thought, "This is a teacher?"

The swim team is allowed by the school administration to eat during the first
class since they swim until 7AM and class starts at 7:25AM. Sara was not
breaking any rules by eating. She was not even doing her BG tests in class but
at the pool before she got her breakfast. Second, I was getting up every
morning at 4:45AM to go to practice with Sara because she was having so many
problems this year with BG and the early morning practice. Her control was out
the window. I had even written a letter to all the teachers explaining that
her BG's were not going well and she could be having difficulty in classes
while we worked this out. This teacher did not care one bit about Sara, only
that she had food in her room. That was the high point for the year.
We finally gave up, but had a talk with the principal after we pulled her from
the class.

We try very hard to educate individuals in contact with Sara with the hope
they will appreciate the extra miles a Diabetic must go through to manage an
average day let alone every time they add any activity or change of routine.
Some people just refuse to see or learn. They must exist in a very small and
stifling world.

Instead of encouraging Sara and being able to feel a sense of accomplishment
by helping a student reach goals, she just shut a student out.
School can be tough for teen Diabetics. Thank God for the other students. We
have found that Sara's peers are more accepting and encouraging of this
illness and the lifestyle disruptions than the adults at the school. Maybe the
kids of today are better people than the adults we have become.
Pam, mom to Sara, 15

March 17, 2002
Hi- 
    I was reading about your dilemma and would like to tell you of my story.
    My daughter who is 18 was cheering at a basketball game and was turned in by the cheerleading coach of the opposing team for wearing a pager and jewelry to the Iowa State Athletic Association. With much turmoil, we resolved the issue.

   Two days ago a teacher argued with a student about facts about Type I
Diabetes saying it was caused from obesity. The student was a Type I
diabetic and unfortunately slightly overweight and not only was wrong but
hurt her feelings terribly and embarrassed her amongst her classmates.

   Thought you might like to hear these stories.

Suzanne Lux

Please help us find a cure for our 18 year old daughter who has Type I
Diabetes. Help fund research through the Juvenile Diabetes Research
Foundation.

March 17, 2002

    My daughter had an incident at our Volusia County school. At the beginning of the school year my daughter kept her blood glucose meter in the school clinic. She went up to check her levels whenever she felt low or lunch time at least 3 times a day. There was another diabetic at the school and the clinic lady gave my daughter the wrong blood glucose meter to use which meant different readings then her own machine. Not to mention using a dirty needle which my daughter had to be tested for AIDS, HEPATITIS AND SEXUALLY TRANSMITTED DISEASES, because the other student was sexually active and also never received the hepatitis vaccine. Her levels were crazy for that week and I came to the school to give her shots which were probably wrong readings which could have been deadly. My daughter now carries her meter with her at all times and has her name all over the kit. Please forward my letter so this never happens to any other child.  

March 14, 2002

This Site is great.  I finally feel like I'm not going crazy.  

      For the past year I have had trouble with my son's school following the 504 plan.  I shouldn't say the school, it actually was the school nurse herself.  I have caught her lying to the doctor about my availability when I was indeed in the same building working.  She has also told my son that he wasn't low enough to eat right away, when he had a blood sugar of 56.  She told him to go back to his class and wait for lunch. This would have required him to put on his winter outer wear, walk up 2 flights of stairs, (then going back down stairs, 15 minutes later for lunch).  Thank God his aid knew this was wrong and fed him his lunch immediately.  

     Another time the nurse gave him insulin without feeding him after a gym class.  The school decided to make him more independent so they took his full time aid away without discussing it with the 504 team or myself. When my son complained to the teacher he was hungry she sent him to the nurses office alone.  He walked to the nurses office (2 flights of stairs) alone to discover his blood sugar was 47!  Needless to say my son's life has been put in danger too many times in this past year.  I could go on and on about all the mistakes.  

      I have decided to fight.  I want my child to be able to do his care in the classroom.  My son is on the insulin pump and is able to do almost all his care on his own.  (He just needs some support from an adult to make sure nothing is missed).  We are in the process of trying to enact a policy that allows diabetic children to do their finger pick wherever they are , in the school , when they need to.   

     Schools need to understand what diabetes care is all about.  They also need to know why all this care has to be done. We do it to keep our kids healthy.  We need the children to learn how to take care of themselves as this is their lifelong illness.  The school shouldn't make it harder for them to stay healthy.

     We live in N.H.  I have been fighting with the school for the past year about my son's care.  I have tried to explain the importance of his care.  

     On 3/13/02, just yesterday, an 8 year old boy was diagnosed with Type 1 diabetes.  Unfortunately, everything that could go wrong did.  This little boy who happens to be my son's cousin, died from a diabetic coma (DKA).  I hope that this opens the schools eyes and they realize that this disease is not to be taken lightly.  Why do we have to wait for mistakes to be made? Why can't we let our children take care of themselves the best way they can without the school making it difficult for them?

     Keep up the good work.  Keep changing laws and policies.  Parents of diabetic children need this support.

L. C.

February 3,2001

Comments:

CARE FOR DIABETICS IN SEMINOLE COUNTY PUBLIC SCHOOLS

In February of 2000 we began our battle to ensure our daughters safety while attending public school. She was to begin kindergarten and there was no way we could feel safe sending her to school knowing there was no immediate assistance for her if she were found unconscious due to a low blood sugar. Seminole Counties answer was to call 911. We were told by SCPS that it was ok for non-medical personnel to administer the epi-pen, an injectable medication for a child having an allergic reaction but the non-medical personnel was not allowed to administer glucagon because of the way they interpreted Florida State Statutes. We then contacted the Office for Civil Rights and filed a complaint with their office on June 5, 2000. 

We also contacted the local news stations and the local newspaper to broadcast and print our story. The American Diabetes Association and our Endocrinology doctors office also got involved to stress the importance of our children's safety in the school environment. The ADA contacted SCPS to include us in one of their school board meetings but we were denied because of the investigation with the OCR, so all of us went to the school board meeting anyways because at the end of the meeting the public is allowed 3 minutes each to speak. There were about 20 of us that spoke our concerns. We wanted to make sure that the school board members were aware of our situation. In November after the OCR's negotiating with SCPS attorneys, SCPS sent out a letter to all staff members asking for volunteers to be trained in the administration of glucagon. The class was taught by the ADA and our Endocrinology office. There were at least two volunteers per school that attended the 3 hour class, and recently SCPS printed the procedures.

 We are still fighting to ensure that all of the diabetic children attending SCPS will receive the full care that they are entitled to, which includes assistance with blood sugar monitoring, insulin injections, supervision with snacks and meals, insulin pump assistance, and trained personnel to assist on field trips and on the school bus. Our battle is not over by no means, the OCR has tried to negotiate with SCPS but feels that SCPS has not adequately complied fully with what the OCR has requested. 

The OCR has planned a meeting between their office and SCPS within the next couple of weeks to try and get these issues resolved. If SCPS fails to comply then the OCR will have no choice but use enforcement. 

We parents hope that SCPS will do the right thing for these children. We will be writing to our local congressman, State representatives and our newly elected President again to express our concerns, so that one day the care for diabetic children in the schools will have one policy nationwide for everyone to follow!

P.B.

September 18 2000
My story of diabetes in the school setting:

My frustration began during the summer when it seemed almost impossible to get an appointment with the principal at Holley Navarre Intermediate. She had led me to believe that I was going to be contacted by either herself or her secretary for an appointment prior to school starting to discuss Robert's condition.

 I called the school several times attempting to speak with the principal. My phone calls were never returned. So, then I notified the District Health Coordinator and he helped me out by calling her to find out when the meeting was going to take place. The meeting was set up for the Friday before school was to start at 10:00 am. 

At the meeting we reevaluated Robert's 504 plan. In this plan it stated that anyone that had contact with Robert in anyway was to be notified of his condition. The principal also assured me that Robert would be in a stress free class for the most part with a teacher that was well organized. Which sounded wonderful, it's just what my son needed. We also agreed that Robert would be able to carry his glucose monitor with him around the school, being that it is his only lifeline to his condition. Meal plans were discussed but not into detail. Only the carbohydrate counts were recorded. It was also agreed that Robert would go to the clinic every morning to do his insulin, since the principal felt uncomfortable about him doing it in his classroom.

I took Robert to the school on orientation day, just so he could get familiar with his classroom and maybe meet some of the children in his class. We had already met with his teacher at the IEP meeting so she had the medical information that was needed for Robert to start school. While we were in the class Robert recognized a students name on one of the desks and said, "Oh gosh!" I pointed the name out to the teacher and told her that she might have some trouble with the child. When we left the classroom Robert expressed to me that he did not want to be in the class because of this child. This little boy was in Robert's first grade class and Robert was afraid of him. So it became quite a concern for me at this point. 

On Wednesday Robert did not want to go to school because of this student. I told him that I would walk him into class and then I would go to talk with the principal about the situation. While walking back down the hallway to the office I saw the assistant principal. She asked me how things were going with Robert and I told her that I did have a concern. So she immediately led me to the principal's office and the three of us sat down and talked. I expressed to them that this child frightened Robert and I did not think that it was a good idea for Robert to stay in the class due to the stressed situation that wouldn't be good for Robert. So I requested that he, Robert, be placed in another class. I explained to them how the child was at the Primary School. They both said that they were not notified by the primary of any discipline problems with the child. I have done a lot of substituting at the Primary School not to mention several thousands of hours of volunteer time, so I assured them that there was a discipline folder on the child and that maybe they needed to go back and look. At that time the principal said that she vaguely remembered his folder being labeled for testing. She then asked me if I could please give her some time to look over the situation, and asked that I give Robert a couple of days to see how he adapted in the classroom. I told her that I was not comfortable with the situation, but I would wait until the following week.

Being the first day of school things were really hectic for the students, teachers, and even the bus drivers. (I am a bus driver and I know that the day had exhausted me.) When the children and I got in from work/school we decided to skip cooking supper, grab the accu check and insulin, jump in the car, and head for Subway for supper. While I was ordering Robert checked his blood sugar. His reading was 357mgs. Which is quite high! 

Robert tends to get upset when his sugar runs high, so I tried to console him by asking questions about why it might be so high? He explained to me that the teacher had given the class a project and it was to go around the classroom and write down all the classmates' names on paper. When he came to this one child's name he misspelled the name. The child got upset with Robert and had no fear in letting Robert know it! Robert said that he was afraid that the boy was going to hit him, only because he was known to do that in the past. After we ate, we went back home Robert did his homework, got a shower, I gave him his night time insulin, he ate his night time snack, then he went on to bed around 8:30pm. 

About 2:10 am my sister-in-law came into my room saying that she could not get Robert out of bed and that something was wrong with him. When I got to his bedroom Robert was in the middle of a diabetic seizure. He has never experienced one of these before. We checked his blood sugar and could not get a reading except for reading LO.  During this seizure, we pulled him up and squirted a tube of glucogel into his mouth following two glasses of Orange Juice. I held him during his seizure and checked his blood sugar again it came up to 51. My husband took Robert while I dialed 911. While the EMT's were on their way we had Robert drink one more glass of orange juice. 

When the EMT's got here Robert's blood sugar was up to 164, but he was still in seizure. So they started an IV and transported him to Sacred Heart Hospital. Once we got to he Hospital, Robert was fine. The on call doctor checked Robert over and explained what had happened to the best of his knowledge. We got back to our house at 5:30 am Thursday morning. Robert's dad stayed home from work with him while I went on to work. 

After my bus route I went over to the Intermediate school to see if the principal was available for a quick conference about what had happened. The secretary said that she was busy speaking with different classes and it would be best if I set up an appointment with her. I asked her how long it would take to get the appointment and she said no more than 2 days. I stressed the importance of speaking with her and she said that I could go to the assistant principal and speak with her. I explained to the assistant principal how serious the situation was in the classroom and that Robert would not be back in school until one of the two children were removed from the class. She said that she was very sorry and that she would definitely look into the matter.

I received a phone call from the assistant principal later that night and she assured me that the other child was removed from the class. She also stressed how sorry she was for placing the child in Robert's class because he did have a discipline problem let alone other problems that could not be said. She said she was sorry for the school's oversight on the matter; they were just overwhelmed with being named an A+ school.

As soon as I let Robert know that the child wasn't in his class anymore, you could see a tremendous weight lifted off his shoulders. He actually wanted to go back to school. When we got to school on Friday, I stayed with Robert while he explained to his class about Diabetes and about his ER experience the night before. Robert's blood sugar reading before lunch was perfect 107. I joined Robert for lunch and then left to volunteer at the primary until it was time for Robert's doctor's appointment. I headed back to the Intermediate around 1:30 to pick Robert up. As I was checking Robert out, the principal came up to me, not to express her concern for the night before, but to let me know that Robert was not allowed to bring carbonated drinks to school. Being late for the doctor's appointment I quickly asked why, she said that if Robert were allowed to bring a diet drink it would not be fair for the other students at the school. I didn't have time to talk about this subject so I left with the thought in my mind.

Monday morning Robert rode the school bus with me while I did my high school route and then he got on another bus, Bus #1, for school. When I finished with my Holley Navarre Primary bus route I went into the primary to do volunteer office work. I received a phone call from the school nurse at the Intermediate school. She was calling to let me know that Robert had a low blood sugar. So I told her that Robert could go ahead and have a snack then check his blood sugar 20 minutes later. Twenty minutes later she called me back at the Primary school to let me know that Robert's sugar had dropped down to 42 mgs. So I quickly headed over to the Intermediate to check on him. When I got to the school I immediately went back to the clinic. Robert was in the clinic and I asked him why he thought he had dropped after a snack, and he said that he thought he was lower than what the first reading gave him. I then asked him why in the world didn't he check sooner than he did. He informed me that when he got off the bus he went up to a hall monitor, teacher, and told her that he did not feel well and that he needed to go to his classroom to get his glucose monitor. 

The hallway monitor told Robert that his teacher was not in her room and that he "needed" to go to the cafeteria with everyone else. So, Robert did as "he was told." He sat in the cafeteria for 20 minutes and then was released to his classroom. When he got to his classroom he checked. I turned around and asked the school nurse if she knew about this and she said no. We asked Robert why he didn't say anything and he said he didn't want to get into trouble. My heart started aching for my son! As soon as he finished explaining the principal walked in wanting to speak with me concerning her policy on conferences. She quickly asked what was wrong with Robert and we (myself, and the 2 school nurses) explained the situation to her. She sincerely apologized and said that she was sorry for not notifying the entire staff of Robert's condition, although it states in his 504 that anyone that comes in contact is to be notified of his condition, but went on to let me know that it would be taken care of immediately. 

As soon as she was through being apologetic she went on to inform me that there were procedures that had to be followed concerning the parent/principal conferences, and that I could not just walk up into her school upset and demand to speak with her. I calmly told her that I was upset and I did ask to speak with her, and that I was told by her secretary that she was in meeting with classes at the time and that I could set up a meeting to speak with her concerning the matter and that it would take no more than 2 days to get the meeting. She then stated that it doesn't take 2 days for a meeting. Then I explained to her that is what I was told by her secretary. I went on to explain that since she was not available I did go to the assistant principal concerning the matter and that the problem was taken care of quickly and I respected her (the assistant) for it. She went on to explain that there were procedures to follow and that I needed to follow them. I then went on to explain to the principal that the problem was an urgent matter, and she then interrupted me by asking me when the incident with Robert took place. I told her Thursday morning about 2:10 am. She asked me what time we arrived back at our house; I said about 5:30 am. She asked me what time I came into her school; I said between 9:30 am and 10:00 am. She asked me where Robert was; I told her he was at the house with his father. She asked me how he was feeling; I said pretty well now. She went on to ask me why I would walk into her school at 10:00 when my son was at home healthy wanting to speak with her about the situation. The only thing I could think of to say was, " until you experience a situation like ours you will never know why, and I pray to God that you never have to experience something that Robert or myself has gone through in the past 2 days." Her answer to that was she was sorry that Robert had to experience it as well, but he was healthy now and the concern was not an emergency issue. I was upset! In the closing of the subject she said that the staff would be notified. I said thank you. I then asked her while I had her attention if I could please address another concern that I had, so that I would not have to go through the procedure of making an appointment. She said yes. I told her that her comment about the diet drink Friday had continuously run through my mind all weekend. All I could hear in my mind is that it wasn't fair for the other student's if Robert had a diet carbonated drink and they didn't! She went on to tell me that it wasn't just about the fairness, but it was a rule in her student handbook. Which I completely understand! So, I asked her if she would please rethink the matter and make an exception to the handbook due to Robert's dietary choices being limited. She went back onto the subject about it not being fair for the other students. After her reasoning I quickly came back with the statement, that 

Robert sits in the cafeteria everyday and watches other students eat and drink things that are not part of his dietary option. She then said that there is other diet drink choices for Robert. I agreed with her then explained that I didn't think that Sugar free tea was an appropriate drink for Robert to have at school, because of the caffeine. I also told her that there is sugar free lemonade, but Robert didn't care for lemonade, and that there was also sugar free grape and fruit punch flavored Kool-Aid. I then pointed out to her that red dye products were not permitted in her school either as it was stated in the handbook as well. So, that left with my son with 2 choices for a beverage at lunch, grape Kool-Aid or water. I told her that I did not find that "fair" at all. She was quiet for a moment and then said that she would bend the handbook rules and allow the red fruit punch flavored Kool-Aid. I asked, "How can you bend the rules for the red punch but you won't bend the rules for something that my son likes and has done for two years?" She said, "Mrs. Wolfe I have made my decision, and I am sorry if it upsets you." My statement back to her was, "Yes, I am upset by your decision, but more than that it breaks my heart to know that the principal of my sons school cannot make an exception due to his disease." Once again she apologized and said her decision stands. She went on to tell me that my son was in third grade and "it was time for him to start facing reality" and that he could not go around breaking rules. My comment back to her was "my son wakes up every morning facing the reality that he has diabetes and he doesn't need some rule about carbonated drinks to teach him about diabetes." I thanked her and told her that she had just made me a stronger person and that she gave me something to fight for as far as being already active with the ADA. It was just one more issue to confront them with concerning Robert at school. I thanked her once more for meeting and then we walked into the room where Robert was sitting. I checked his blood sugar one more time before he went back to class and he was 116 mgs. At that time his teacher came into the clinic to let Robert know that he was supposed to go to his gifted class, which was his first day there for the year. I asked her if anyone had talked to the gifted teacher about Robert's diabetes and she said that she hadn't but she would give her the proper information when she walked Robert to the class. (Once again it is stated in the 504 that any teacher would be educated on his diabetes, let alone notified.) Robert went to class and I went back to the Primary school concerned on what was going to happen next. I received a phone call from the intermediate around 12:00 pm. It was a teacher assistant and she was filling in for the nurse while she was at lunch. One more concern why was my child left with someone that was not a school nurse? Anyway the assistant went on to tell me that Robert's blood sugar was high, it was 364 mgs. At that time I broke into tears and left for the Intermediate to check Robert out of school. 

When I came to the office to sign Robert out the principal approached me to ask if something was wrong with Robert. I told her yes. She then began to stress her concerns about Robert's glucose monitor being carried around school, she stated that she was afraid that Robert would hurt someone or someone would hurt him with the so-called finger pricker that purposely is used to prick the finger and draw blood. I assured her that Robert had been carrying it with him for two years and it never ever even entered my mind as far as Robert doing something like that. I told her that Robert would never ever think of it either. She told me that she was rethinking the situation and might have the glucose monitor handled by the teachers and that she would look further into it.

After I pulled Robert out of school I talked to several different people concerning the matter. I know that I did not want to send Robert back to the Intermediate, not with all the mistakes that had happened so far, there was no more room for other mistakes. So I spoke with my mother concerning what I should do with Robert. She picked up the phone and made a call to West Navarre Elementary she spoke with the data processor over there and she relayed the message to their principal, who said that she would accept Robert at her school for enrollment. I felt a major relief! Not only did she accept him; she let her concern show. The school nurse at West Navarre Elementary is not only a diabetic educator but has a diabetic background herself. I know that every one of Robert's needs and wants will be dealt with by medical expertise and warmhearted compassion by the school.

When I returned to the Intermediate to sign the withdrawal and transfer form the principal, she once again stressed her concern for the so-called "finger pricker". She said, " Mrs. Wolfe, please take my advice on this finger pricker issue, I know how children act and if something happens concerning the finger pricker you will be held liable." I assured her that the finger pricker would never be a concern and that it was my sons only life source!

Now my son is at West Navarre Elementary, they are very kind and compassionate not to mention well-educated on diabetes. They know the importance of my son having his supplies with him at every second. But, now the problem that I am facing is with the School Board. They are trying to tell me that an allergic person can carry an epipen and an asthmatic can carry an inhaler, but my son who is insulin diabetic cannot carry his supplies, which is his only life source! Why? DISCRIMINATION? IGNORANCE? Or BOTH? 

September 7,2000

First of all I would like to thank you for your website. I don't feel quite
so alone now.
My daughter Jessica is having the same basic problems in school except in reverse. This nurse is a district nurse and she never even met my daughter in person. She wanted her CNA (Certified Nurse's Assistant) to treat Jess, with or without my consent For the last 3 years I home schooled her due to the same problem. I thought that high school would be different. She was diagnosed at 14 mos. And had little to no problems through elementary. Then with middle school came adolescence, blood sugars went crazy and so did the school nurse. To avoid the problem I kept her home. Her grades improved as did her control. Then I went to the high school and registered her. Talked with all the involved people and was assured there would be no problems. On July 29th, her step-dad
suffered a fatal heart attack. This was a total shock to us all, but earth
shattering to Jess. They were as close as any father daughter could be. We came back to my home state of Texas.

Our world destroyed and her blood sugars totally out of control, I went to the local high school and enrolled her. She loved going to school again. She even liked all her teachers. On the second day I received a call from the CNA at the school requesting instructions and the name of Jessica's doctor. I explained we had only arrived here a few days before and her appointment with her diabetic team wouldn't be until 9/28/00. However I did send the usual instructions on Jessica's diabetic care the following day. That same day I received another call from the school, this time it was the RN over the district. She was so busy telling me how she wanted to treat Jess until she wouldn't even listen to me. She wanted to test her blood sugar every day before lunch. I told her I would appreciate that even though I had already given Jess orders to do these test. I didn't want her pulled out of class for test. I assured her that after almost 14 years Jess was capable of caring for herself. I also told her of the conditions of our move and how it would take a little time with all the new factors in Jessica's life for her to regain control. She agreed and everything was fine until the following day. The CNA called to report high blood sugars. Jess and I both reassured her this could be dealt with at school. She was nervous and pushed the panic button. She called the RN who told her to send Jess home. The next day the same thing happened. I told them I can not stabilize her unless you permit her to stay in school. Once again she was sent home. Finally I told Jess to stop reporting her blood sugars to them. They caught her anyway and insisted on blood test and sending her home. I wrote letters and e-mail to the principal and superintendent. I received no reply until the day I removed her from their school. Then it was only the superintendent and he acted as if he knew nothing about it. I thought that was it, she was out of their school and I could start to start over. I was wrong, the RN had turned me over to Children's Protective Services. Now I am having to prove to the state of Texas I am a good mother. The nurse who never even had time to meet me or my daughter has to answer to no one. If I had of permitted that woman to do things her way Jess would still be totally out of control and missing more school than attending. She would have made Jess fail and probably learn to hate school. I don't know of one responsible medical professional who will treat a condition over the phone with never even meeting the person. I feel I would have been negligent with my daughters care if I had have permitted that kind of treatment to continue. I always thought a public education was something no one could take away from us but I now know, If you try to protect your child from malpractice in Texas they will do what they can to take your children away from you. I do intend to fight to get Jess back in school but first things first, now I must prove after all these years of diabetes I am not a threat to my own daughters welfare. It seems ironic I have fought to keep my daughter alive since 1986 and now I have to fight just to keep her at all.

Thank you for listening to my long list of complaints and If there is any
help out there for us please let me know.

Sincerely,
R.A.

September 6, 2000

N.B. writes:
We have a daughter who was diagnosed with Type I Diabetes on March 4,1996. She was 5 1/2 at the time.
She started on the pump 1/00 and is doing great. This fits into our lifestyle and gives her much better control. School is our problem. Our daughter ends up missing 20 to 90 minutes a day of class time due to testing and Tx of her Diabetes. We have been working with our school district for one year trying to change the policy. We are in the process of starting a pilot study which would allow in-class testing. We told the school that it was lawsuit time or they let us test. So they devised this pilot study. It is to start in the next week. Hopefully all will go smoothly. The school still refuses Glucagon, we are not giving up on this. We just can only handle one major issue at a  time.

August 30, 2000

My grandchild, age 10, and her mother, a registered nurse, are becoming embroiled in a newly formulated school policy which among other things requires glucose testing in the back of the classroom, not at the desk. It looks like this may become a legal issue. Their reasoning is that blood "spattering" presents a risk of hepatitis to other students!!! I feel that this is not a legitimate concern based on the minute amt. of blood, "one drop only," the disposal of strips and sharps in containers, and the general good health of students. It interrupts further into the students class time and makes them more self conscious. Would appreciate input into general policies in other schools and points to defend my position. (Or am I wrong?) This policy is going into effect in PA. at the West Shore School District near Harrisburg.   -R.W.-

August 13,2000

J.M. Comments:

I am a parent of a child who has juvenile diabetes in the Seminole County area in Florida. I have a big concern for my child's welfare at his school. The county will not allow or permit use of a glucagun by designated school personnel in a life or death situation for him. I find this unacceptable and inhumane.The Florida State Laws states: Medication prescribed by a physician may be administered to the student if failure to take such medication jeopardizes the students health. School personnel designated by the principal to administer medication must be appropriately trained by a school board nurse. Those procedures include, administering emergency injectable medication. The county says that only applies to an epipen. That is not what is states on the paper, that is what they are saying. The county also says they are only allowed to assist students, which would be impossible if my son is having seizure. They stated that a glucagun is an invasive medical service and that the administration of glucagon requires a nurse to use.

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