Have I asked too much of my children's elementary school teachers, and nurse?

[purple4cf]

My daughter, 5,started kindergarten this past August. Our pulmonary nurse and nutritionist were very active in her IEP meetings. We had two at the request of the school. One at the beginning of the summer and one a few days before school started. They (the school) wanted to include her teacher, the school nurse, lunchroom staff, physical education coaches, myself, her father, gradparents (whatever family wanted to attend), her pulmonary nurse and nutritionist! It was alot! Of course all of these people couldnt be together in one meeting so they split them up by what they felt most important being in the meeting closest to the first day. The team from pulmonary brought very peice of information imaginable to both meetings! It was a blessing and a curse. The school nurse now send me emails daily with her intake chart. I.E. how many enzymes, almost exactly how many bites of each peice of food she is givin, exact amounts of juice and milk drank, and exact amounts of snack eatten. She usally eats Breakfast, lunch and snack at the school unless tey are serving somthing she doesnt like and we know will not eat well that day. Lunchroom staff has asked that I provide them with the days she will eat what meal or bring from home in order to have her plate ready when she comes throughhe line. They have special permissons to give her extra fat, protein, calories and or salt for everything they provide to her. They also have made it possible for her to receive more of somthing that she really enjoys and eats well and provide her with whole milk which they dont usually even keep at the school, without cost to my husband and I! P.E. coaches allow her to drink sips of an electrolyte drink whenever she feels like she needs it and do not require her to do what they do of other children in her class. I get called for some of the silliest things almost everyday. I feel that she is very smart and plays them all! Her doctor says we re very LUCKY to have a school work so closely and efficiently with us, EVERYDAY! The principal and counselor are also very involved. Together,they have had several talks with the students about her Mic Key tube and C.F. They have also warned and stay on any child who comes in contact with her as well as the parents about germs, sickness, fever, flu, sneezing and coughing ec., constantly! The school system as a general rule keeps each classroom thermostat set on a certain setting and they have made it to where in any classroom she will be in, it is set at a much much cooler temperature. She gets very hot, very easily and sweats like crazy. They were calling me saying she had a fever all the time until the temp. change in the classrooms! I did not ask for any public special treatment for her at any point. I want her to be as self suficient as possible and live a normal life. They are making her disabled. The school nurse sits at every meal with her to count bites or measure milk or whatever it is she does. I have never seen any of them (the principal mailnly) this way with our son who is 9 with severe ADHD. She has no learnng disabilities but is treated like a porcelin doll. He is barely passing and they could care less. It is easier to just give a failing grade than address the problem. To let him stretch and get some of the restlessness out of his body. To tell him twice what books to bring home or what homework he has that night. More importantly what TEST he will have the next day! Treated as if nothing is wrong with him and he is just as capable as any other student without learning problems. I have now asked for him to be evaluated for Section 504 without putting him in Special Education classes specifically. Its been a week and nothing so far. But like clockwork I hear about our daughter EVERY SINGLE DAY! I dont mind it but its not really needed as long as she has a constant weight gain and she is not sick. They want me to give him Adderall. NO WAY! Its is not worth the anxiety, emotional breakdowns, sleepless nights and weight loss he is faced with everyday when it wears off. How can the same school be so great (other than she will never seem to live a normal school life there due to the handouts she is givin while at school)with my daughter with C.F. and so careless with my son who has ADHD? So FRUSTRATED!!!

Mommy of Riley 9, No C.F.(Z),
Jaylee 5, C.F.(X),
Jaycee 3, No C.F.(X) , and
8 months Pregnant with Jackson, C.F. positive prenatal DNA testing (Z)

 

[Aboveallislove]

My son is only 3 so I can't answer first hand, but here are some thoughts fwtw: The school could well view CF as a "real" disease and ADHD not and thus the difference in their approach. I know that isn't the case, but that could be it or they feel you just "medicate" and they won't bother otherwise. Not sure but I'm sure that's hard on your. Re your daughter. My biggest concern is the hovering with the eating. That has to put preassure on her to eat and that will be the easiest thing she can manipulate. I wonder if it might make sense to talk with the CF Center's social worker and/or psychologist and have that be the basis to request that her meals are with other kids without supervision. Re the germ aspect and special treatment in lunch room, I actually think that is good although the extra notice isn't necessary--but then again, how to approach without whiplashing the other way. And re the lunch room--given the new federal Nazi regulations on food, they don't have much choice! Hang in there mom and i'm sure others can gives some great advise.

 

[purple4cf]

Thanks! With my husband deployed, it is extremely hard making decisions alone and decyfering what is ok, what I can let slide and what is just wrong! Not that Im an idiot, but with so many things going on its hard to question the school that does so well/or horrible with my daughter. Our pulmonary team seems to think they are amazing.....

 

[AleksandraKaczynska]

welll. my daughter is 5 and also started preschool... our staff was very inetersed, we had one meeting - just me and some staff - more showed up then I though would .. I gave them a note concerning Asia's needs on paper - one page .. and we had a nice talk... then I told other parents - this was harder as not all parents see further then the top of their nose... but the rest of parents - especially one mom - stood up for me with what I call a "war hamer" in hand and made the two who seemed a problem ... well turn red and hush... I'm not sure if it made any difference.
However the rest of parents took it deep inside and most just though - oh, my god ... what if it was my kid...
anyway - all seems more or less fine
if the parents need more talks I will tell them all they want - that's all- it's not their fault Asia gets sick - it's cf - that's what I said and asked just for help and said I believe and trust them
If someone wants to talk - I talk to them alone, let them ask questions and so on...
we have another meeting in a two weeks - we'll see - as one parent send her boy to school a bit sick and told him to keep out of Asia ! - I hope someone else will have this talk with them...
My point is that it's easy for you to turn the situation the other way around and do more harm... maybe try talking to then individually - not emails... but do not discourage them - with time they will come to the same conclustions about your daughter also, give a little laught sometimes at some things... and give them time to know your child
good luck

 

[sdavis227]

It seems that you already think that they are doing too much for your daughter. If I were you I would put a stop to it immediately. Yes, she has CF, but she should also be treated like a regular child and not be so separated from how the other children are treated. AND I would totally talk to them about your son's need for an IEP.

We have a 504 plan for our child without CF but who has ADHD & Tourette but NOT one (yet) for our CFer (he is 5 and just started kindergarten this year as well).
I just went in and had a meeting with his teacher and nurse and let them know what they needed about DS and his CF. We have decided to just try to get as many extra calories as we can at home and if he starts dropping weight we will start adding stuff at school. The only way that he is different from other kids is that he does not share crayons, scissors, etc. with the other children and instead has his own. The teacher knows to move him away from children who seem like they might be coming down with something.

I am sure at some time we will start an IEP or 504 for our child with CF but I really want both of my children to be able to be children and not segregated from their peers because of their minor differences. Even with DS with TS/ADHD the 504 plan is very simple as I do not want him to be looked at as being so different from other children.

If your son has been diagnosed with ADHD I would ask the psychiatrist (or whichever kind of doc) to write a letter to the school and include that he/she thinks there should be an IEP in place and what all might be helpful to have in such IEP.

 

[TreasureGoddess]

wow, that's too much. I'm afraid that talking to every student about coming into contact with your daughter, sitting and recording exactly what she ate, etc is going to make other children see her as the "sick kid" and could make your kiddo feel like "the CF kid" which is NOT what you want starting school. I have a 504 plan on file with the schools and talk with the teachers, nurse and administration to make sure that certain things are in place for my son, but the main point is we don't want him treated differently or treated as that sick kid. He is JOE, who happens to have CF and has to have some extra things in place. I'd speak up now, and ask another adult or family member to come along to take notes and be your 2nd person there. Speak with the principal and see if you need to have a modification of the plan meeting or not. I'd say thanks for your help, BUT ....... and ask that the staff not single her out so much. Go with your gut. You're a mom and live with this all the time. They're a school and not used to having someone with CF. They mean well, but this is too much and it'll end up making your child feel less able to help herself and less independent. Give them a detailed list of what you'd like and tell them you don't want the nurse sitting with your child (or anyone) to make notes of what she eats. Guess what she'll eat and have her take that number of enzymes before the meal. Possibly send a granola bar, energy bar or peanut butter crackers daily so if she doesn't like the meal, she can still get calories and the proper amount of fat, etc for her enzymes to be effective.

Stand up now to make the changes. The teachers & staff want to help your kid as much as they can, but need to see that they could actually be hurting her with too much attention. You're a good mom and are doing a great job. Just feel confident that you know what she needs. Good luck!

 

[scrapper1264]

I definitely agree with TreasureGoddess - I would be afraid your daughter would be perceived as the "sick kid." In kindergarten it's not a big deal, but as they get a little older it will be perceived as such. Last year when DS was in 3rd grade other classmates noticed that he had to go to the nurse's office to take his enzymes before lunch, and would start questioning him. He felt a little uncomfortable with that situation. He handled it well, but would definitely prefer not to have to answer those questions.

And why does the nurse track every bite of food? That seems a bit excessive even to a controlling Mom like me (I'm working on being less controlling, I promise!). It probably would be good to schedule a meeting with the nurse to let her know how you feel.

 

[toria]

I'm a teacher with CF. I grew up without 504s and IEP meetings.My mother talked to the teacher and she taught me how to take care of myself. She was a stay at home mom and my lunch was filled with nutritious high calorie foods I would eat. I was sick frequently and missed school. I was given the extra time to do work. Yes your daughter is playing them, and yes it is ridiculous they measure her food. But the production with all these people set that up. I suggest you take a step back. In writing say you don't need all this and let her eat and play. That is why she goes to school for the social aspect. Being homeschooled would be safer. Let her live.

As for your son. He needs to step up too. You are unwilling to medicate him, buy say he won't have a normal life. Why won't you if he is that severe? He is losing valuable time. Don't blame the school. You expect him to be with groups of people and concentrate and want to blame the teacher. Now I am not sure I would medicate my kids either unless I exhausted every avenue(no dyes, no electronics, all natural everything). Yes, 504s can make his grades better but falsely. A good teacher will do their best to make him succeed without a piece of paper. The paperwork is taking us from the valuable time to lesson design. If you can't get him to concentrate in a quiet house, then don't expect the school to fix it. Talk to your doctor and be open minded. Worst case he stops taking it. We aren't all built the same.

 

[JENNYC]

Hi!! My son has ADHD and ADD and Abby when she first started they made a huge fuss over her too. But she was coming home with stomach aches so I asked if they could let me know what and how much she was eating and how many enzymes they were giving and when for about a year until the staff felt comfortable with her and her stomach issues stopped. It was the only way I could advise them since I was not there and it worked beautifully. Now the school nurse knows exactly how many enzymes she needs with what. And my son use to be on Concerta until it started upping his heart rate to dangerous levels and making his chest hurt so we stopped that immediately and I'm too scared to put him on anything else. He also had a lot of weight loss while on it. His teachers every year fuss because he has trouble focusing and has trouble sitting perfectly still all day, but as soon as I tell them what issues we had when we tried to help him they stop fussing, but you're right that no one tries to help him. I hope everything works itself out for you, and it really is great that your CF team goes and talks to your school!! That's amazing!! And also that your school is taking it seriously. I do always give the new teacher every year the talk of don't feel sorry for her and let her push you over or she will. She is still a normal little girl in that aspect.

 

[Allansarmy]

I can tell you are an excellent mom and well organized, except for your wall of text that you wrote... sorry couldn't help it . Please don't take it the wrong way. It just seems a bit too much. To have the nurse email you with how many bites your child eats, how many enzymes they take for the day and if any kid has a cold? Your expectations are too high in the school system. This is a public school is it not? If its private, then I say get what your paying for and communicate as much as you want.

I have 3 kids. So I have seen them go through all levels of school from elementary to college. When they get to High School its a completely different animal. Your lucky to even speak with the nurse much less than get daily emails. You are going to have to let your child have more freedom when it comes to taking medicine when they get older. That means asking the nurse if they can keep the pills in their pocket and take it before they eat.

My son was diagnosed with CF at 4 months, he has Tourettes and he also cultured MRSA when he was younger, he is 16 years old now. He has a G-button and keeps his pills in his pocket. We did communicate a little more with the teachers and nurse when my son was in elementary, but now that he is in High School, he just keeps the enzymes in his pocket and takes them before he eats. When he is doing athletics we let the coach know about the G-button and he allows my son to change in a different locker room area so other kids don't hound him about his button. But notice I didn't ask for emails, or phone calls or well.. anything from the coach. It was handled from parent to coach and we got it done in about 30 seconds. No meetings were needed. I would highly suggest you do the same with your child as they get older. I am not saying now as they are young. It allows them to take ownership of the disease and it gives them a little more freedom. That way they don't resent you or others as much.

 

[65rosessamurai]

If I can chime in here a bit...

I hadn't had much time to go through everyone's post, so i'm directing it to the original post.

As I read about your daughter going to school for the first time, it reminded me of my elementary school years. (sometime after the dinosaurs, btw)

I had siblings going there, but it may not had made much difference because the school had heard of the family name.

I was diagnosed at about 8 years of age, so the first part of my elementary school days were trying, without the added factors of nurses and doctors following me around, and such.

After diagnosis, I didn't feel I had any special previsions, other than if I felt ill, I could go to the principal's office (where the nursing station was) to lay down.

I did have to visit a school psychiatrist, whom, after reflecting on the visits, I wonder why he asked such impertinent questions and didn't go for any real psych quesitons.

My peers knew i was dealing with somthing, but didn't understand what, but which induced being picked on, of which I wished I had some help in that aspect.

From your indication, it seems that the people involved are overreacting, not giving your daughter any room "to grow" and perhaps even discouraging her from taking even little steps to stand on her own, so she can be more accepted by her peers as someone with a "handicap", rather than someone who is "sick" or "ill".

Many times I had to go to the office at lunch to take my meds, and they stood over me to count, making sure I didn't overdose on enzymes, but I went to lunch with my peers just a little bit after they went to sit down to eat.

So, with this synopsis coming from a patients perspective, I hope you can come to some more comforting decisions on how you want your daughter treated so she can still thrive, mentally and physically, while getting the proper attention she needs.

Good luck and hang in there!

 

[patrish22]

Count your blessings on the CF issue! My kids school was a constant battle until our social worker had to step in with me. Even then it was still a battle, (a bunch of long stories, no need to go into). I do want to address the adderall, there are other options for your son. I have been a user of adderall for years and do not experience any of the side effects that you are discussing, and it has truly been a life saver. My son also had a problem with it until we used XL. Perhaps your son was not being dosed properly by the doctor who was prescribing. XL (extended release works better). There are also other meds available, maybe get a second opinion. Don't let yourself and your son suffer needlessly. Yes there is a stigma with adderall, but it has changed my life and the life of my son so dramatically. Good luck, and I am so happy to hear that the school is so helpful with the CF, because your child deserves all the help she can get!