To school or not to school that is the question

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kimmidwife

kimmidwife

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to school or not to school that is the question

Alright everyone I need some advice,
Caitlyn has missed so much school this year. Today we pushed her to go to school I feel so guilty. She is having continued stomach pain and just wants to lay around. Her school is cooperative but I hate that she is missing so much. What do you all think? Do you push your kids to go to school even if they ae not feeling perfect? My husband is also worriedconcerned if DJs I taking advantage of it. Alright my phone is not behaving again!
 
Our rule is no fever = go to school. It's always been that way. Sounds harsh but that is the drill Claire is used to so she just keeps going. That said, her sickest times have been in the summer when there was no school.

My ramblings probably aren't helping a bit!

J.
 
Hi Kim,

That's a tough question... When Stephen missed a lot of school last year, he was definitely sick (just before diagnosis) so I didn't question whether or not he was sick. And, now, being in grade 12, he, himself, is worried about missing school for appointments, etc. so, again, i'm not worried that he's taking advantage...

But, had the same question/doubt when my kids were a bit younger (and prior to Crohn's being an issue)... :confused2: if they asked to stay home because they were sick, it 'usually' also meant that I reminded them that they must also be feeling too sick to go to their soccer or hockey games (or whatever else was going on...). :( I guess their response was what I used to 'measure' how sick they really felt...

But, lots of times, if they did agree to skip their game (or whatever), I would end up letting them go to soccer/hockey because, after being home all day, I did believe they were often feeling better by the evening... (I don't know... maybe I just got suckered in! :yrolleyes: :lol:)

Not sure if that helps... It's a tougher call with a younger 'teen' with Crohns :(
 
It can be a tough call alright, I was dx age 11, had many missed days from school. Mum just followed my lead, if I said I was unwell I stayed at home and yes there were days when I could have gone but I studied hard while at home.
I had three sets of exams in high school over the years and they would always cause me extra trips to the bathroom with stress, extra trips to the restroom meant major hemorrhages and in turn severe anemia, this was back at a time when crohn's was unheard of, there wasn't any internet for people to research and understand my condition and even a note from my very respected GI was completely disregarded.
I sat every exam even though my very best friend at the time would have to carry me too and from school to make sure I didn't pass out. On separate occasions over the years two of my teachers told me NOT TO BOTHER wasting my time or theirs as I had no hope of ever passing an exam, they even took me results out of the pile first so they could make an example of me and to both their surprises I passed with flying colors, I did better than a lot of others in my year who had attended every day.
I thank my parents esp my mum every day for their support over the years, they never pushed or stressed me and in return I tried my very best.
I know some kids will try it on but my parents let me set the pace and explained that I could achieve anything I put my mind to but I didn't have to get there first time round I just had to give it my best.
Gwen xxx
 
Glad to hear you went to pick her up:) I think that crohn's can be so debilitating at times. You can have severe stomach ache or really bad runny tummy, not to mention how fatigued and wiped out you feel during a flare. When my daughter went through flare ups, I arranged for her to have home tuition. A tutor comes to your home to tutor your child a couple times a week. You can arrange this through her physician's office - who has to complete a form for her school.
 
I would look at the bigger picture here as a guide to how you may tackle things in the long term.

I know it is difficult not to focus on the days missed but what are Caitlyns grades like?

Does she study whilst at home?

Is she able to do self directed learning?

If she is on top of things regardless of days missed then i wouldn't worry about it. If on the other hand you are worried about her missed days because her learning is suffering then I would re-evaluate the situation. As Kelly has suggested, a tutor may well be the answer if this is the case.

I personally don't believe that if she is going to school in pain she will learn much anyway. Pain can be and is very debilitating so focusing on the task at hand can be very difficult. Unfortunately pain is subjective so it also means developing a sense of what is tolerable and what really warrants staying at home.
I think perhaps the distraction of having other children around may be helpful at lessening the pain at times but not when it comes to sitting in a classroom and being expected to focus.

Sarah became progressively ill from about the beginning of Grade 8 and missed a substantial amount of school in Grade 8 and 9. She was always a driven student so I knew from the outset that the choice or inability to attend was not easy for her. I did take her lead and whatever she felt she was capable of doing or not doing was what I went with and it wasn't just a pain thing either, I knew there were days when she had no pain at all but was just too tired.

Her grades did not suffer as a result of her absences, and this is probably a tad off topic here, but her attitude did change as a result of her illness. I don't know if it was the eventual diagnosis or the unexpected surgery that changed her but she did change. She went from being very driven and competitive to, I don't know seeing life differently. Her focus changed and school was no longer the be all and end all. Having said that, she remained determined and she certainly achieved but she became more focused on the future rather than the day to day existence of going to school.

Sorry for rambling!

Dusty. xxx
 
It’s a hard call and we’re not always going to be right. There were times I sent them to school and they came home sicker (felt like a horrible mom) and other times they stayed home and I knew I’d been suckered in (felt like a loser mom)! :shifty: Regardless of my decision, I've second guessed myself a dozen times.

A funny story... :redface: (funny now...!!) Years ago, my daughter twisted her ankle at soccer and the coach wrapped it up with a disposable cold pack. (For those who don't know what they are, it's a small pouch, filled with a chemical that, when you snap/shake, gets cold. These pouches sit in coaches’ bags for the season and lose their strength/intensity as time passes. Anyone who's used one, knows they are usually just 'cool' not ‘icy’.) Once home, we continued to ice it (with a cloth barrier),… a few times. Each time, she said it hurt... We told her 'of course it hurts - you twisted your ankle. Part of playing soccer..." She continued saying it was red, stinging and hurting, ‘yes, of course it’s red; you’re icing it and you’ve twisted it…’ Duh…:ybatty: That night, my mother (who, of course, knows best!) kept ‘suggesting’ that we have it checked at ER in case of a broken bone; I said it wasn’t necessary, she could easily walk on it, it was just sore. After continuing to ‘suggest’ emergency until the next day, and offering to take her herself, I finally agreed ‘sure, if you want to spend your day at emergency needlessly…’ :yrolleyes:

Guess what? Not a broken bone but… she had FROSTBITE!!! :eek: Huh??? From soccer??? :ywow: I’m sure you can all imagine how horrible my husband and I felt!!! Apparently the disposable pouch was new and hadn’t lost any of its intensity! (And the coach put it directly on her skin, with no barrier.) Years later, she still reminds us of our ‘negligence’! :redface:

(Warning to parents of soccer players – beware of frostbite! :eek: LOL)

So, we’re not perfect… we may send them to school sometimes when they're sick... or let them take advantage sometimes when we shouldn't... we do the best we can :heart:
 
I agree with Tesscorm. Sometimes going out and about (school) can make things worse. Whether it be stress from school, weather, or even something silly like extra weight from the backpack, etc it can make a bigger difference then we realize. Some times the best thing is just to stay home and relax, even if she does do some school work while at home. Does she have any friends that could bring school work home for her? You could even get in touch with the teachers and explain the situation then even you pick up the days work and have Caitlyn work on it while at home. This way she isn't getting behind and I'm sure you or even her friends could give her a hand if she had any questions.

When I was younger, I actually enjoyed going to school so I didn't like when I was sick and couldn't go. You should look into things like: Does she have a lot of friends at school (if not, maybe there are some issues coming up that would make her want to stay home), Are there any problems with her teachers (the bad ones can really ruin school) and stuff like that. If you think she genuinely enjoys school then to me it would be different if she says she feels sick and would like to stay home. Am I rambling on or do I make sense?

Having crohns, just like most of the other members I know it really does wear you out sometimes and even if you want to do something, you physically can't. Just like Dustykat said too if she's in a lot of pain she probably would have a hard time focusing at school anyways.
 
Caitlyn generally likes school. She does have 2 teachers this year she does not like as much but usually she just deals with it. I think part of the problem is she has missed so much that when she does go she feels a little lost and out of things.
 
Hmm, is it possible that those teachers could influence her decision to not want to go to school? I'm not at all trying to get around the fact that she is sick but I know personally I know if I'm not feeling well the last thing I want to do is go and deal with somebody I don't like. It only makes things worse. If you can afford it, have you considered asking somebody to help her catch up? Even if she has a friend that is fairly smart, buy some chips or even candy and have them get together and they can have snacks and the friend can help out with school work. Maybe the school has some sort of after school seminars where they go more in depth with the lesson plan and it helps kids out.

I feel bad for her. I'm in school now and I hate trying to catch up after missing time. As you're trying to catch up the teacher continues teaching and it just seems like you're always behind. I think it would be a great idea to get the teachers really involved and maybe they can give her some more lee-way when assignments and tests.
 
I was wondering too, about the 504 plan...if she misses enough she is eligible for a tutor. I am not sure how much (I am not worried about it yet as Izz is ahead in school and needs it mainly for social skills right now) but it may be worth looking into!

ETA we actually already have a 504 plan...it is only a page long but there is a bunch of communication in there that her nurse and teacher can refer to if need be. It may seem like overkill but I figure her teachers are better off with more info than not enough :)

Funny aside...our school felt the need to send me a form letter about how much school Izzi is missing and how very important her schooling is - if they can help improve her attendance in any way...yadda yadda yadda. Of course this is after I got a doc's note to allow her to attend with a low grade fever after she missed 3 days for one. I should have wrote them back to ask them to teach her in the bathroom!
 
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if they can help improve her attendance in any way
Click to expand...

Kudos to you Angie for your self control! I would have told them to find a cure for Crohn's and then she will have exemplary attendance! :rolleyes:

Dusty. :)
 
She does not have a 504 plan. Her school has been wonderful at working with Caitlyn and trying to help her as much as possible. We asked about home tutoring and had her evaluated by the special school district but they said they do not prove home tutoring. they did approve her for an after school private tutor twice a week but it is pretty far away and it was to stressful for Caitlyn so we did not continue with it.
 
I thought about applying for a 504 plan but next year we are hopefully moving to a different state and I figure we will apply for one when we get there.
 
I am 16 and just diagnosed a few moths ago and i did the same thing. i was nervous and scared to go to school and my stomach still hurt really bad. my parents let me stay home for a bit and then sorta pushed me to school to just see how i could handle it. getting back out was the worst part but it got better. i still go to school even when my stomach hurts but sometimes i get picked up half day if it is really bad. We applied for the medical 504 and it gives comfort knowing that i have the option to go to the bathroom whenever needed. plus it shows the teachers that you arent messing with them but it is really a problem and such. Also, my school allows you to apply for home medical where a teacher in each subject comes once a week to give work and keep in touch. i didnt use this but we have told them we are interested if it ever came to that. You probably know and have done all that but just thought i'd share the kid perspective :D
 
I guess I'll add to this too.

I was diagnosed in grade 11 and am now finishing 1st semester of my 3rd year in university. if you saw me counting backwards to exactly what grade on my fingers just there you probably wouldn't know it Hahaha.

Anyway I missed a lot of school in my senior years and I was very lucky enough to have my eventual long term girlfriend in lots of my classes who had a ton of sympathy for me and brought me all assignments, notes and explained it to me if I missed a day. So maybe a "study buddy" of sorts could help? I know it did with me.

It may be worth talking to her about how confident she is with her disease and going to school with it. When I was diagnosed and in high school I was surprisingly very open and told basically anybody who asked and nobody ever bugged me and I had no issues with being nervous about going to school which in turn actually did make me sick and missed school.

For some reason in university I've gone through phases of feeling extremely anxious and self conscious about my Crohn's even though I know very few people there. I get extreme anxiety and end up missing class as I sit on the toilet getting rid of the aniexty in liquid form.... I'm sorry for the visuals. Maybe find out, if you can, about what her friends think and that sort of thing because high school kids can be brutal sometimes.

Oh and one of thing my parents did to me (and they thought I didn't realize lmao) was tell me to just try atleast and if I really can't do it then come home. That was in hopes that once I got there I'd just stay.... It was however beneficial though that I atleast got to some class here and there and actually got some face to face time with teachers. Might be worth a try if school isn't too far away.


Please excuse the posting grammar mistakes I'm using a new keyboard on my new phone app and I'm clearly struggling here. Sorry.
 
Thanks Pipergirl and CrazyCanuck,
I really appreciate both of your inputs. I think Caitlyn is pretty comfortable at school. She is in 8th grade. She goes to a small private school and her teachers are wonderful and very understanding. The other girls are also great the one issue with them is that Caitlyn has been gone so much this year that when she is there she kind of feels left out of things.
I am also having a hard time making her do work when she is home because she just wants t stay curled up in a little ball on the couch and do nothing. Or go on to the computer to her favorite website which is a role play website. If you don't know what role play is it is where one person starts a story then the next person continues it and the next person etc. She loves this and her Writing teacher says it is very educational and that her writing is at a very high level due to all the time she spends on this website. I did also hear about a science website that I am going to check out in a minute.

CrazyCanuck I can totally relate to the typing issues I got a new phone and a new computer that both change your words to what they feel is right.
 
My son attends a public school in NY and has unfortunately been on home instruction for almost 3 years now. It is awful socially and he misses school and kids so much - but I am so grateful that he is still on 9th grade level and has not fallen too far behind. Our school has let us try shortened days (attend 2 classes and have tutors for 3 other classes) - this worked out for sometime last year but then he got worse. I pushed a lot the first year or two ... but I know to trust him now.
 
Hi Jeanne,
Firstly how is Danny doing? Secondly you guys are lucky New York is much better about helping kids then Missouri. There is little support here as the school system is very broke (financially). I will try to cal them again though. I found this great website called KahnAcademy that you can watch videos of different subjects for free. I am going to ask her teachers to take a look and see if they can find some that match up with what they are teaching.
 
I'm so sorry to hear about the school system there. :(

I should have added that that was one of the things that helped here with both of my children too, they were able to come and go at school as they pleased, all they had to do was go via the front office. It was a blessing when they had pain at school, they could just come home. Or if they had had a bad night they could turn up at lunch time. Also they were given a key to a private toilet.

We don't have 504's here but I did everything via the school principal and they were on board from the outset. One particular thing I did do though was to have a meeting with all the teachers involved, the principal, the deputy principal and the school counsellor. I handed out brochures from the Crohn's and Colitis association about School and Crohn's and also copies of a "report" that I typed up about Sarah and her disease, what she had been through and how it now impacts on her, the medications she is on and what I felt were topics that needed to be discussed. I went through that report and we discussed issues as we went along.
I knew that the school was sympathetic and on board and I thought that they had grasped an understanding of what she was going through but they hadn't, hence the meeting with everyone in attendance. It wasn't until then that they truly had a concept if how invasive this disease was on her life 24/7.

Dusty. xxx
 
Dusty,
Can you post an outline of what to tell teachers and school? Next year when Caitlyn starts high school I am sure we will need it.
 
Kim -
Thanks. Danny is still sick, although better than last winter. Fatigue is his worst symptom but he also had constant abdominal pain and headache, explosive D 5-6 times daily (including 2-3 times a night) I need to update my Danny's Story thread ... I was just hoping to get something more to say ...

Dusty's letter to the school is a very helpful example. (She posted it earlier this year in another thread) I rewrote my school summary in a similar format as it was much more personal than my original brief listing of symptoms.
 
No problem at all. :) I shall I also post it in the sticky thread School/College/University & IBD......

Even though the school was on board and I never had an issue with them I knew they didn't really appreciate what Sarah was going through. This was a concern I had in her final year of school so I arranged a meeting with the Principal, all her teachers and any other staff involved with her and basically told them what she went through on a daily basis and what I expected of them. This is the report I wrote.
Click to expand...
Background
Sarah was diagnosed with Crohn’s disease in July 2006 following surgical intervention. In hindsight the disease had most likely been present for at least two years prior to hospitalisation. During this time other diagnoses had been made including Abdominal Migraine and Pancreatitis.

What Is Crohn’s Disease
Crohn’s disease is one of two types of inflammatory bowel disease (IBD). Any part of the gastrointestinal tract can be affected but the most frequent site for Crohn’s disease is the ileum. This is where Sarah’s is located.

Causes
The cause of Crohn’s disease remains unknown, however, a number of factors are believed to contribute to its formation. These include genetic predisposition, environmental effects, viral or bacterial infections and/or abnormalities of the immune system. The only one we can rule out for Sarah is genetic predisposition as she has no first degree relatives with the disorder.

Post 2006/Remission
The surgical intervention required in July 2006 was a Right Hemicolectomy. This procedure necessitated the removal of 68cm of bowel including the terminal ileum. As a result Sarah has been in remission since this time due the combined effects of the surgery and medication.

Side Effects
The issues that Sarah faces on a daily basis have little to do with her Crohn’s disease, they are a direct result of the surgery. Unfortunately the side effects impact significantly on her day to day functioning and they include:
 Eating – Sarah has to plan her eating around what her activities are for the day. On an average school day Sarah will not eat breakfast or lunch and if she is working in the afternoon will not eat until she has finished work. Occasionally she will have lunch at school.
 Toileting – The reason for the above issues are due to the effect eating has on her need to use the toilet. The removal of the terminal ileum has resulted in frequent loose bowel motions (the terminal ileum is where water and bile salts are reabsorbed back into the body hence the loose bowel motions when it is removed). One of the most disturbing aspects of this is if Sarah is unable to eat until quite late in the day she may be up to the toilet 7 or 8 times during the night. This then leads to the next problem.
 Fatigue – The majority of Sarah’s absences from school are not related to illness but fatigue/tiredness due to much disrupted sleep patterns.
 Anaemia – Sarah is frequently tested for haemaglobin , folic acid and iron store levels. The terminal ileum is also responsible for the absorption of B12 and other iron nutrients. Sarah receives supplementation of these but often sits at the lower end of the normal blood range and at times slips below. This then compounds the problem of fatigue/tiredness.
 Spontaneity – Everything Sarah does in her life has to be planned, she has no spontaneity. This affects her ability to socialise and attend outings, excursions, work and school.

Medications
Sarah takes the following medications on a regular basis:
 Imuran (oral) – This is taken daily. Imuran is an immunosuppressant drug and as the action implies its objective is to suppress the immune system in the hope of keeping diseases like Crohn’s in remission. It is not without its side effects the main one being its ability to affect blood cells which is the reason she is required to have blood taken at least every two months.
Imuran also causes photosensitivity so extended periods of exposure to the sun should be avoided.
 Folic acid (oral) – This is taken daily and is required as Sarah is unable to absorb it due to the removal of the terminal ileum.
 Neocytamin (B12) Injections – These are 3 monthly and again this is required as Sarah is unable to absorb it due to the removal of the terminal ileum.

Other Issues
Crohn’s disease and the effects of the (R) Hemicolectomy are problems Sarah is going to have to deal with for the rest of her life.
Migraines – Sarah also suffers from migraine headaches. These seem to be becoming less frequent and hopefully it will stay that way. Medication for these is taken on a needs be basis.
Sore Eyes – Sarah frequently complains of sore eyes. She consulted with an ophthalmologist as it was felt it could be related to the Crohn’s disease. No problems or defects were found which is good however the problem still persists

Discussion Points
• Sarah presents well thus masking problems that may be present.
• Matthew – do his abilities undermine her confidence?
• Counsellor – would it help?
• Needs sustained guidance and support.

04/06/09

Looking back at the causes, well I now do solidly believe that it is hereditary in our case.

I hope this helps,
Dusty. xxx
Click to expand...
 
Thanks Dusty. I also found on google a copy of a 504 plan for IBD. I copied it to my computer to have ready when we get ready for high school.
 

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