Question, Frustrated, Concerned (warning ranting)

[momofphoenix]

1) Question
At what low bs do you pick your child up from school?

2) My Ranting, Frustration and Concerns!!! It's long:(

I have posted a few different threads in regards to our school and the school nurse, well yesterday my DS was 44 at lunch the nurse followed his Dr. Orders for correcting his low but it was a stubborn low it took approx. 40minutes to get him to 114 (<100 is ok for lunch per Dr Orders) she held him from Recess and had him eat lunch with the School Counselor :eek:. She didn't tell me this, the Counselor told me.. Then she said "Oh yeah he was low so he couldn't eat with his class and missed recess" I didn't say anything cause I was so mad :mad: I just looked at her, we just talked about this on Dec. 17th on how she can't hold him from recess, to let him eat in her office or the main office so he still gets his whole 13 minutes of recess (yes it is only 13 minutes long) she says "it isn't sanitary for him to eat lunch in my office but it IS sanitary for him to eat a snack in my office" HMMMMM What the heck does that mean??? Its like stuff flows from her pie-hole with out her knowing.
So today I dropped him off at school cause he had a bunch of supplies to bring in for correcting lows. She was so rude to me. She was having a meeting about my family with the Director Of Special Education. She told me her records show if he is low in the am at home he is lower during the day at school (DUH I have told her this about 15 different times and she tells me "I know what I am doing!!!!") Then she tells me he needs a carb'ed snack on days he is low in the am at home (no crap I do this already and she has done nothing but complain cause he is higher then he should be later on) So I told her I will send in Ritz crackers for the teacher to hold onto for those days, in case he is running low during the day just give him a couple, she rolled her eyes at me, and told me I wasn't listening to her!!!!! "She knows how to treat a D child, she has done this in the past...." I am so frustrated.
I walked my DS to his class and tried to speak to his teacher, she totally ignored me! I walked up to her to tell her something and she turned her back to me and walked away. I walk out of my DS classroom and go to leave the school, another school staff member stops me in the hall to tell me that the Nurse is having a HUGE meeting today in regards to my family and the "stress" I have put on her!!! What the heck?? Stress I put on her, she has no idea what she has put on my family... I just dont get it... I have asked her to call me with bs <50 so her and I can talk and find a way to correct him faster so he isnt missing his free time with his friends. She refuses!!! I have tried to work this out with the Nurse and it has gotten to the point where I dont feel that my DS is safe in that school, he was so happy this morning and as soon as we walked into the school he started to cry and begged me to bring him home with me...

[Kaylee's Mommy]

can you go to this meeting? after all it IS about your son.. you should be allowed to go... second.. have you discussed any of this with the principal? do you have in your 504that you be contacted if he's below 50? if you don't,get it in there asap... this nurse sounds like a total PITA.. I would make sure you document everything, and call a meeting. Call her out on everything she's done.. put it all out and tell her what you expect.. have the principal there and the teacher.. see if your CDE will go with you.. This has been going on long enough.. its time she stop.. its hurting phoenix... Call the ORC and the ADA and see if they can help you..

I hope this gets straightened out soon!!

[Tori's Mom]

Oh my gosh. Poor Phoenix. He should not have to feel that way about being in school. If they are treating YOU a grown adult that way, I wonder how they are treating HIM when you are not around.
I am livid right along with you!! Is the principal of the school involved in all of this? I would take the bull by the horns and call the principal. Ask for a meeting of your own to be set. I don't know if you have a 504 or not(or if they have refused you that) but NOW is a good time to make sure one is set.
I'm so sorry this is happening to both of you.

To answer your question, I have never had to pick Tori up from school because of a low. They treat it there and are in contact with me by telephone as needed until it is resolved.

[carlysmom]

It sounds to me like the nurse is not capable of dealing with the care of a diabetic child and her stress is coming from that, not your child's diabetes. Does she have this much trouble dealing with the asthmatic children at school too? I would definitely attend the meeting, invited or not. I would suggest that all faculty members who will be dealing with your child be trained and educated. I am fighting this fight right now. Definitely if not done yet, get a 504 plan. Don't be afraid to use the words, rights, law, and obligated.

[Debbie]

Be sure you are documenting all her mistakes and double talk. I would set up a meeting first with the principal and then with the nurse and principal and then nurse , principal, and teacher. This not acceptable. She does not seem to understand that all kids with D are different. Maybe your endo's ofice could send someone out to back you up.

Also--I have never picked Adyson up from school for a low. They just feed her and check her and notify me. She has come home for a subborn high becaue she feels so yucky.

[Sarah Maddie's Mom]

I have picked up only for persistant highs, not for lows. Lows get treated and retest and carry on.

It sounds like a cool headed intervention is called for here - and I know that is asking A LOT given the history.

If nurse is calling a meeting w/out your knowledge then you must counter with the same. If you don't have a 504 it's time, if you haven't called in outside support, ie OCR its time.

In preparing your case I would try to avoid fixating on specific past grievences - that will only end in a "she said/she said" waste of energy. Try to document exactly what policy you want in place, be very very specific and be prepared to hold them to it.

Good luck -- also see very recent thread titled "Another Victory in School"

[Sarah Maddie's Mom]

http://forums.childrenwithdiabetes.com/showthread.php?t=10632

This one should give you some ideas

[wendyc]

I am so sorry! This is just totally unacceptable. I would call the principal and let them know that since this meeting is about your family, you want to be present. Tell them you are prepared for them to be critical, but you need to be involved. I would contact the ADA today for some guidance.

As for lows, Abby has had one or two stubborn ones, but never sent home for that. The nurse did not feel comfortable having her eat in the cafeteria at that time (Abby is a ssslllllooooow eater:D) and wanted someone to monitor her. So, they had her eat in her class with her teacher and a friend and her sister. There is just too much traffic in the nurses office, and they like to keep Abby and the germ factor seperated as much as possible! They did call me in advance to advise me and ask for my permission to do this. They did keep her in from recess with my blessing, and she was dubbed her teachers "special helper" and got to do some cool stuff. Now, Abby's teacher is T1 and has been since the age of 10. So, she fully understands what Abby is feeling, and how being singled out can effect a child. This is why they buddy up so she doesn't feel left out.

[DustinsDad]

Definitely a 504 related issue. I see that the two main people responsible for care have two different approaches. A re-hash of the 504 and maybe some amendments will allow both you and the nurse to come to a "meeting of minds" as to proper and consistent care protocol for Phoenix. It would be good to have an extra person there to moderate (and referee if necessary) while the two of you discuss issues (relevant or not) and gripes so that you both can understand the other's side. In the end, Phoenix is the one who is supposed to benefit from this, so bite your tongue if needed and also don't hesitate to keep the conversation on track if the nurse can't bite hers. I wish you luck and smooth sailing and the OCR if things don't go as they should.

[momofphoenix]

Here is the crappy part, My son attends a Department of Defense school.. They do not do 504 plans ONLY IEP's (so they say) I am having my hubby surfing the net at work looking for one that he can print up. I told him to make 2 copies, one that I can fill out with what we expect and what Phoenix needs at school and one for the school to do as to what they expect and will do. I called yesterday to schedule a meeting, (maybe that is what the meeting today was about:confused:) I am suppose to get the date and time today if it isnt soon enough I will be calling to get it changed to a time that is better for MY family. I figured between the 2 504's with what we each expect and what we will do we should be able to come up with a solution that works for everyone EXPECIALLY Phoenix.

My issues are that they will keep him from Recess cause he had a stuborn low that wouldnt come up lunch is at 11:13 she makes him wait untill 12:15 to eat lunch if he is still low why cant he eat in her office? or the main office? why cant they have someone with him at lunch? these are all things that I am brining up at the meeting, I am hopeing this fix's some of the issues. I do expect his teacher to notice if he is acting different, but the class he is in is so hecktic all the time that she doesnt notice if he is acting wierd, that is scary. I did contact other schools that are off base and have some interviews set up to check them out. One has 3 other T1 children in the school. I thought that was promising, they already know every kid is different and D is different in each child. I wont feel like my kid is a guini pig anymore.

Thank you all for the support, I really need it today. Between all this crap at school and someother junk I feel like I'm losing my mind... Thanks again, You guys are GREAT!!!!!!!!!!!!

[Gwyn]

Jessie,

Every time I read your posts it is like reliving our last school year. We finally ended up homeschooling.....I don't know if this is an option for you, but it really saved my sanity.

My advice is to please call your endo and have them call the nurse before this meeting. The nurse is not going to listen to you; she is obviously just writing you off as a crazy overbearing mom. But they may listen to your doctor (and if not your doctor, your lawyer). She needs to hear that she is completely out of line from someone she will listen to.

[CC'sMom]

Oh Jessie, I'm so sorry to hear all this. I can't believe they are having a meeting about your family, but not including you!! I don't know how it works with a Dept. of Defense school, but you already got some great advise. I truly hope this can be worked out for you.

[jules12]

Agree with a lot of the advice you are getting - just wanted to send some good thoughts your way!

[DustinsDad]

An IEP is just as good as a 504. The component you need to add is "nursing services" and can have a reference to something like "instructions on file in nurse's office". The instructions would be the same write-up as a basic 504 plan. In that way, the care procedures can change without having to call a meeting to change the IEP. The instructions are just as binding as a 504, and you'll still need the Endo to sign it (and make sure to have the Endo specify that the parent can make changes, otherwise the school may not listen to your directions). You need a formal meeting to make the change, as it is moving toward a more restrictive environment, and the members of your CSE team should all be there. The meeting itself shouldn't take long - just to get the components written in. The instructions can be dealt with separately between you, the Endo, the nurse, and the CSE chair and special ed teacher. Going with just a 504 is ok, but an IEP is more flexible and can contain all that a 504 would (and is just as legally binding).

[momofphoenix]

I have had the Endo write a letter to the nurse, this is what it says....



"Due to the mothers knowledge of her child Phoenix, her say is law. She has cared for her child for 8 years and 5 of them as a diabetic child. If you can not take her word for changes and adjustments without a letter from Childrens then you need to find a new job or learn how to read our orders."

This was after the 15th Dr. order change is 3 weeks. It did not help. And the Endo did the wording all on his own. :D I love our Endo... They are now to the point at school that they are having a 3rd person in the room when I am in there. It was the nurse, me and the school counceler earlier to day when I picked my DS up from school with a bs of 56 (end of day and couldnt ride the bus) I think changing schools is going to end up being my only option. The stress and tension in that school now is unbeleavable. I walk in and my heart sinks to my stomach... It's so nerve raking.

Thanks for all the advice.

[wendyc]

It breaks my heart that changing schools may be your only option. Is Phoenix aware of what's going on? Does he feel the tension? I so hope not.

Love your Endo!

[badshoe]

Call Crystal Jackson at ADA. She is great. She does these issues for a living.

[rickst29]

Here is the crappy part, My son attends a Department of Defense school.. They do not do 504 plans ONLY IEP's (so they say) I am having my hubby surfing the net at work looking for one that he can print up.

DDESS/DODEA schools are not exempt from Section 504 of the ADA. And no IEP can eliminate your rights by behaving as a secret cabal. The school's policy (we don't have 504 plans") is illegal, and it's committee appears to be behaving against the stated policy of DOD:

"You also have the right to attend any school meeting held with respect to the identification, evaluation, and educational placement of your child and to participate in the development of your child’s Individualized Education Program (IEP)."

Here's the web page, and that quote is from the very top ("1. Record of Participation"). http://www.am.dodea.edu/ddessasc/aboutddess/education/parentrights_english.html
Invite them to read the web page and comply. If they don't JUMP, I'd call the New York/Virginia liason's office for Special Ed:

* 3308 John Quick Road
* Quantico, VA 22134-1702
* (703) 432-0281 Fax (703) 784-4851

here's some more reading material: :cwds:
http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_DETAIL_1?section_id=20.40.500.570.0.0.0.0.0&content_id=176401
http://www.dodea.edu/instruction/curriculum/special_ed/publication/MAX-268_ParentGuide_12-13.pdf

From those pages, you can download more stuff, and go hunting around for more.... good luck. You clearly have the RIGHT to attend "any" meeting.So if you desire to attend EVERY meeting, they must accommodate you.

[Jacob'sDad]

If your kid is low it is dangerous for him to wait to eat lunch. That is neglect. This nurse is doing things that are harmful to your child. The school has to have a nurse on staff that can care for your child. They don't have that. Insist that they put a nurse on staff to take care of your child. If they don't want to fire this one then they will need to hire an additional one.

[Livi'smom]

You know, with all of this help on here you may be able to get what you want for your son....but at what expense?

They are wrong, bad, and just plain mean so if it were me I would not want my son in that kind of place. Yes, they may be just thrilled to pieces that they "ran ya'll off" but chances are in your favor that ya'll will end up in a much better place. Some place that actually loves children. :cwds:

Let the DOD win that battle. Type 1 is a lifetime war that the DOD can't begin to understand.

[deafmack]

Here is the crappy part, My son attends a Department of Defense school.. They do not do 504 plans ONLY IEP's (so they say) I am having my hubby surfing the net at work looking for one that he can print up. I told him to make 2 copies, one that I can fill out with what we expect and what Phoenix needs at school and one for the school to do as to what they expect and will do. I called yesterday to schedule a meeting, (maybe that is what the meeting today was about:confused:) I am suppose to get the date and time today if it isnt soon enough I will be calling to get it changed to a time that is better for MY family. I figured between the 2 504's with what we each expect and what we will do we should be able to come up with a solution that works for everyone EXPECIALLY Phoenix.

My issues are that they will keep him from Recess cause he had a stuborn low that wouldnt come up lunch is at 11:13 she makes him wait untill 12:15 to eat lunch if he is still low why cant he eat in her office? or the main office? why cant they have someone with him at lunch? these are all things that I am brining up at the meeting, I am hopeing this fix's some of the issues. I do expect his teacher to notice if he is acting different, but the class he is in is so hecktic all the time that she doesnt notice if he is acting wierd, that is scary. I did contact other schools that are off base and have some interviews set up to check them out. One has 3 other T1 children in the school. I thought that was promising, they already know every kid is different and D is different in each child. I wont feel like my kid is a guini pig anymore.

Thank you all for the support, I really need it today. Between all this crap at school and someother junk I feel like I'm losing my mind... Thanks again, You guys are GREAT!!!!!!!!!!!!

They do IEP's but don't do 504 plans. Now that is a new one. I have heard of everything now. If they do IEP's then they have to do 504 plans. It is Federal Law. They cannot deny you one.

[jendean]

I am so sorry you are dealing with this.
I think, sadly, the only answer would be to go to a school where you can get a 504, or find a lawyer to help you, which would jeopardize the whole reason you go to that school... Right?
Kind of a good ol' boys club, dont rock the boat type of situation.
Sometimes it is ok not to fight the good fight.
Though you have every right to expect more.
I am so sorry about this all.

:(

[Gwyn]

What a dilemma---I feel so sad for you and Phoenix. All of the stress of this situation must be overwhelming at times.

I wish you could bring Phoenix over to my house for a homeschool coop--Devin would love to have a "partner in crime"--and so would I!

[Mary Lou]

I can't imagine how you dread sending Pheonix off to school each day.

I hope he's managing to cope, himself.

To answer your original question -- my boys will occassionally have lunch with the nurse if their BGs are low and there is a concern about them getting to eat their lunch quickly enough (no standing in line, waiting to sit, etc.). I asked them if they minded, and they don't because they said the cafeteria is really loud and it's nice break to eat with the nurse. Then again, their nurses are NICE. They have also been kept out of recess and been "classroom helpers" b/c of low BGs.

Find some time to sit and reflect on what you want for Pheonix at this point. Consider all your options and search your heart and discuss it with your family. Does Phoenix like the school? Is he happy? Does he want to stay or would he like to switch schools or stay home with you? I'm sure you'll figure out the best course of action for you and your family.

I am so sorry that these people are being so unkind and making you feel so terrible.

[Richard157]

Jessie, this is soooo stressful for both you and Phoenix! I am so sorry that the two of you have to endure all this. I can still remember going through these times when I was 6 and in elementary school. My teachers knew nothing about diabetes then. It was a miserable time in my life. I got through it and I am sure Phoenix will too. It may seem an impossible situation but all of you will get through this most difficult time. Each year will be better. It was that way with me. You know I survived and am 68 years old, with 62 years of diabetes under my belt and only a few minor complications. Phoenix will become stronger and adapt as time passes. Maybe we will see you at the Coffee House soon. Take care, Jessie!!

Richard

[cadesmom]

I agree with the others, you need a 504, I also have nurse problems, I ended up getting a device called a glucomon, what that does is send me Cades bg # to my phone and then I can better over see what needs to be done, also have thought about getting him a phone, so he can text you,that way you can avoid the nurse.

[momofphoenix]

I agree with the others, you need a 504, I also have nurse problems, I ended up getting a device called a glucomon, what that does is send me Cades bg # to my phone and then I can better over see what needs to be done, also have thought about getting him a phone, so he can text you,that way you can avoid the nurse.

Phoenix is only 8 and can't spell well enough to use a cell phone, I am going to call his endo on monday and explain the need for a CGMS it will help detect those low's before they come on and will eleminate a lot of the issue's with the nurse altho when he got a trial with the CGMS all she did for those 6 days was complain about him having it. Seems like anything I do to help keep him safe and in more control at school pi$$'s her off. Oh well I am the mama :D

BTW---- all this stemed from her holding him from lunch and recess due to a low, I am a SAHM and we only live 3 minutes (seriously I have timed it on more then one occation) from the school. So it isnt like she couldnt call me so I can go up there and sit with him at lunch. This is her way of controling our issue's with each other. I dont mean to be bit*hy about his cares but I do EXPECT her to follow his Dr. Orders and my wish's on his cares. I am nice to her, I have never been disrespectful to her or of her. I do voice my opinions on how she cares for him. At times I can get hot headed. And yes I have gotten that way with the nurse, but it has only been after she tells me she needs certain things from the Dr, and I get them and she doesnt follow them.