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Crohn's Disease Forum

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May 3, 2013
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*SERIOUS VENT WARNING*
Okay, teacher, first you try to claim that my son's stomach cramps, exhaustion, joint pain, vomiting, and other Crohn's symptoms are all in his head (even after I tried to explain to you that he has been diagnosed with moderate to severe Crohn's and everything that involves. And, nobody could have missed the Erythema Nodosum on his legs). That, you know people with Crohn's and had other students who needed things like Chemotherapy and that his complaints basically, in your opinoin, seem to be over the top and he can push through.
He should be fine to go to and fully participate in school EVERY day no matter how he claims he is feeling.
That his dislike of going to school when he 'claims' to be in pain or exhausted, (This school year only. He was diagnosed in Sept) is because of me doing something to inspire what is 'in his head'.
During a Crohn's flare-up you tried to claim that he ate a 'healthy lunch' from the school cafeteria. He said he didn't eat any lunch the day you claimed that because another student took his piece of pizza. Upon further investigation and questioning of other students by you and school staff, it turned out, you had no idea what you were talking about.
Now that I have provided you (and other school staff) with information, medical evidence, specialist doctor diagnosis and logic that absolutely disputes your claims,
Now, you question whether his stomach cramps and pains are just because of dairy products and food intolerance. :ybatty:
How would I like to respond?

1. A dairy intolerance, I wish the doctors and I had thought of that!!! Everything can be all better now, our worries are over!!
2. I was a constant variable the last several years he has been going to school. If you want to point the blame for his dislike of school this year at specific person...
3. My son is not stupid. He knows your opinion, even though neither of us understand you stance or why.
4. Maybe, just maybe some people, don't express how much pain they are actually going through to those who aren't close to them. Especially those who don't seem to really want to understand or listen and whom they don't trust.
5. You're right, let me call his pediatrician and have him make a referral to you, and tell the health insurance company they need to cover my son's medical care under your great expertise.
6. Because, all cancer is the same and all cancer treatments work the same for all cancer patients, right? Same for Crohn's.
6. Yup, as a working, full-time single mother of four, I enjoy having my child miss school often for what I claim to be doctor appointments, medical procedures and treatments, just because he is 'faking' it.
7. I'm doing everything wrong, you're right. All I have to do is cut dairy out of his diet and continue forcing him to go to school when he says he feels like complete crap, so you can tell him he's fine and making it up. Forget the doctor appointments, and 'voila' he'll be healed, and be a better person for it.
8. This is my son, he is my priority (not yours), please stop making our already difficult situation worse. I wish more than anything that he could be healthy and in school everyday. I am doing my damndest to make that happen. But, please try to be understanding in the meantime. I care more about making sure he has a decent life-span and living until there is a cure than about him getting exceptional grades in school.
9. Okay, give-up all of your sick days and disability. However crappy you are feeling, go to work anyway. And, do a good job of it!!

How should I respond? How will I respond? I don't know. First I have to figure out if I'm overreacting or not reacting enough.
 
Sorry you had to find us.

I am sure some of the American parents will long shortly.

Do you have 504?
 
I've had some similar issues with my son's teacher this year (not as bad, main issue was she wasn't adjusting work levels/expectaions to meet his energy levels thus he was not managing to complete everything to desired standards which was causing tensions). I escalated the issue within th school and did manage to get it resolved after a meeting with the principle, primary year coordinator, school doctor, teacher. Liam's health hasn't improved since that meeting but the change in attitude/expectation at school means rather than having tears about school he is loving going once more.

Has your teacher put her complaints / views on paper or in email ? (our school uses email heavily for communicating with parents and it's great because there is evidence of what was said.) If not I'd try and get her to do so. If need be you could use an excuse such as being a very visual person and needing things in writing to take them in properly or wanting to share & discuss with someone (doctor, family members etc.)

Then I think you need to escalate this within your school (if you can get some of the feedback in writing first that will definitely help). Here there isn't a clear cut support structure for kids with health needs (my understanding is that's more clearly set out in US schools and like Catherine said, I'm sure they'll be someone along shortly to explain that. For me it was a case of looking at the school structure, (year coordinators, principle & deputy principles, counsellor & medical staff) and trying to find someone who I thought would be supportive but I also knew was a constructive, solution oriented person and then contacting them and ask for advise on how to proceed in fixing the issue. Fortunately I picked the right person and she drove the rest of the process, so it was then only a matter of turning up to a meeting to be told the answers they'd come up with to fix the problem.

I do agree with her position that it's positive for your child to be at school as much as possible (and I suspect you do too). However to make that happen and have school be a positive part of you're sons experience rather than a source of stress, that could trigger worsened symptoms you need the teacher/school to make some compromises/accomodations to meet your childs health needs.
 
Copy, paste and print!! Send it with some basic crohn's info packet and tell her/him to go mffff themself!! Do all this after school is out for summer!!:)

PS. That's a great intro post!! Hope you stick around!
 
You are not over reacting! This teacher needs to be put in place or fired! I guess start with the principal ... if the principal is not correctly supportive, then it would need further escalation. A doctor's note explaining this could also be helpful. We've written notes as required and our GI signed them.

Sorry you have to go through this. We've never had any issues with the school and Danny, but my older son had serious back issues and he unfortunately came across some bad ones too. (ie gym teacher saying "You just need to toughen up!") My husband spoke to those teachers.
 
Ann, Have you looked at the 'Stupid things people say' thread? Your son's teacher could fit in there!! He/she sounds clueless. Good luck and hang in there.
 
Yep 504 if he doesn't have one, get it now even if school is nearly out you will be in a strong position to start next year.
Here is a great link to a 504 form http://www.ccfa.org/resources/template-section-504-plan.html
Letter from his GI explaining Crohn's and current and possible future symptoms, ours also has that he may frequently miss school due to the symptoms of Crohn's
504 has:
Unlimited anytime bathroom pass.
Stop the time testing (in case he has to use that bathroom pass)
Allowed frequent snacks throughout the day
No penalty for late assignments (any late assignments are due week of final testing).
Teacher at their discretion is allowed to waive assignments (although it doesn't sound like it would work very well with his current teacher) We like to call this the meat and not the potatoes. In other words he has to do the "major" assignments but not all the busy work, like worksheets or daily bell ringers (writing). This is especially helpful after missing lots of days.
Work with the principal and the counselor. We have not had too many problems and most teachers we have had have even suggested other accommodations for him and asked him how they can help (like a seat by the door).
Only had one teacher who was not happy about the bathroom pass (PE teacher) said I just can't have a kid running off without telling me. Looked at her and said he doesn't have time to tell you, if he is all the sudden missing from your class I can bet you he is in the restroom. This is the same teacher he broke his foot in her class and she said he never said anything to me. ARGGHHH! But she did follow the 504.
 
No you are not overreacting. I had the same problem with P.E. teacher. I requested a conference with all teachers, principal and school nurse. Gave them copies of Medical history and internet information about disease. Fortunately they were very supportive. I got the 504 plan. If you don't find support at school level. Go to District. No kid should be suffering with a disease and on top have to be bullied by a Teacher.
 
It's amazing how insensitive some people can be. My son was yelled at for throwing up into a trash can in the school healthroom, because no one was there, to show him where he SHOULD throw up. That was just before the diagnosis. :mad2:

After he was diagnosed, I kept him home about a month longer than everyone else wanted me to. He was feeling good in general, but his energy levels were low and he was passing gas that would NOT have been well accepted by his high school peers and he had a lot to deal with emotionally. In my view, our 504 plan didn't go far enough to protect my son.

I received some scary letters in regard to his "truancy", but I'm glad I didn't buckle. I truly saw it as life and death. His education could wait.

When he was ready and finally did go back, it was obvious they weren't ready for him when he came home on day 1 and told me that the healthroom closed everyday at 11 a.m.! And I was like, hey guys, let me learn you something about federal law...:poo:

A nurse found out I was keeping him home and said, "You can't let Crohn's rule your whole life" and I said, "No, not his whole life...but, a couple of months, yes."
 
Stupid people!! I was pulling up the CCFA website for the template on 504 plans and saw that Jacqui had already posted the link.

I faced similar issues when my Alex was diagnosed so I used the template, edited it to meet Alex' needs (including worse case scenarios) and I had to call for the meeting (we had the WORST most uneffective Guidance Counselor EVER - or so I thought until today)...

When I called for a meeting I *told* them that I was bringing in the 504 Plan as was prescribed to be the BEST and most appropriate services to meet Alex' needs. I told them that a group of Doctors, Lawyers and Pyschologist had already approved this Plan - because that is what it says on the CCFA website! :ylol:

They told me in a very snotty tone - "Well then you might have to bring your attorney with you for the meeting." I told them, "I'll bring mine, if you'll bring your's - and I'll bring a Court Order with NCLB, ADA, 504 Law information with me."

End of conversation.

In our case, in the end Alex continued to miss too many days and it always stressed him out. Our pediatrician recommended he come out (January 8th grade) for the remainder of the year. The school objected for half of a meeting... NEVER screw with Mother Bear... :hallo3: After leaving the GC and English teacher in tears - I told them that they are responsible for providing him with an education. Since then he has been homeschooled through the County. It is *awesome*!! He loves it - no stress! Teachers who work in the program love it - so they are great with the kids! He pulls straight A's (is now a sophomore in HS) and is able to participate on any level he feels up to in clubs, sports, extra-curricular activities and will recieve a HS diploma - courtesy of my tax dollars and the state.

Go get'em Mom!!

:ghug:

Sorry you had to deal with them!!
 
Wow. My son just messaged me from school, saying that a coach who was in his LA classroom "only to hit on the sub" physically stopped my son from trying to leave the classroom to go to the bathroom. He blocked the doorway with his body! Even after my son told him that he has Crohn's! :(
 
Wow. My son just messaged me from school, saying that a coach who was in his LA classroom "only to hit on the sub" physically stopped my son from trying to leave the classroom to go to the bathroom. He blocked the doorway with his body! Even after my son told him that he has Crohn's! :(

File a complaint! Subs are not excused for being idiots.
 
My Son was diagnosed at age 11- he just turned 13 yesterday. He has various same issues at school (his Dr wrote a letter to the school about what s&s to expect and for him to have open bathroom priveleges). That still doesn't stop the bullies in the bathroom when his greatest wish is to have some privacy!! Nor does it stop the school nurse from rolling her eyes when she sees my Son coming for more tylenol or Tums. My heart goes out to you, and everyone who has this horrible disease...but especially the children :( I wanted to get the info. below out to anyone who suffers from anemia and can't tolerate iron pills... this is copied from a previous post I made on another thread- hope it helps:

Hello to all,

My 13 yr old Son was diagnosed with Crohn's at age 11. He can't tolerate iron pills of any kind and he was so anemic. His GI DR told us about a liquid iron supplement for bariatric patients who can't absorb iron- it's called Iron Protein Succinylate, around 12.00/bottle and it tastes better than traditional liquid iron. My Son's Hbg was back to almost normal after 1 month. He has been on it for 6 months now, and Hgb lower end of normal. He is getting tired of the taste (not the best but far from the worst- fruit flavor). I just today found another web site with a liquid iron supplement that is clear and supposed to be flavorless and is a naturally occurring iron enriched spring water. Comes in individual packs of 28 for 19.99. I ordered some and will update after he tries it. I hope this is helpful. Also, regarding side effects and constipation... NONE so far with the IPS. :)

Search: Ferrett's IPS liquid supplement.

Search: Spatone pur-Absorb Iron
 
I also wanted to ask if anyone has child with Crohn's who is doing online schooling and how is it working out? My 7th grader keeps asking me to let him do online school because of the bathroom issues at school (no privacy, being made fun of/bullying, embarassment from asking to go so frequently). I recently started taking him to counseling for school anxiety issues, and thought counselor could help us make that decision. She doesn't think it's a good idea...but I don't think she really understands what our kids with Crohn's go thru at school. Any thoughts? Thank you
 
File a complaint! Subs are not excused for being idiots.

It was the coach, not the sub., someone who should not have even been in the classroom. I told the VP and he took it seriously, apologized and said he'd look into it.

So far, my son has not faced any bullying. If he did, I would take him out in a heartbeat and have him do online school.

He may do a combo next year, online school in the morning, attend school in the afternoon, as mornings can be difficult for him.
 
Our school gives DS access to the "staff" bathrooms near by the lock
So less of an issue . He is in elem school though so not sure how the upper grades will work.
 
Ann, I think your entire letter is valid, but maybe not be the best way to start. Perhaps you need to have a sitdown conversation about your feelings with his teacher, a review of your son's medical journey to date, his current symptoms and feelings about school and ask the teacher for any suggestions that might help the situation. After she shares her ideas, share your feelings and see if you might be able to come up with a working solution. Whether or not this works, let her know you'll be filing a 504 plan, if he doesn't have one already.
 
Amy, Blocking the door so your son can't use the restroom is just wrong!!! That's insane an adult, let alone a teacher would act that way. Definitely get the 504 in place. Our school has a mandatory meeting with me and his core teachers every year so everyone is aware. We haven't had any problems. It was even the school principal that suggested to me that we put one in place and he with the school councelor drafted one up then they tweaked it to be personal just to Brian's issues. Its rewritten each year to accomodate any changes in my son's condition. Your school's office staff are surely familiar with the 504.
 
My son has a 504, but the school has unintentionally broken it a few times and he just recently started back. Because the coach isn't one of my son's instructors, he didn't know about his disease or the 504. I'm sure he's been told now, though and hopefully he will think before doing something like that to a student in the future, but probably not. I don't think he's the sensitive type.

By blocking the doorway, the coach stressed my son out and then he couldn't go until half a day later. My son has lost a few lbs since going back to school and I know it's because of this sort of thing. :(
 
This is why they need to give him a laminated pass to carry always for the unlimited bathroom access. Then no need to explain and no need to inform everyone .
DS has one.
Hope the stress decreases.
 
I don't think a teacher should block any student from needing to use the restroom. There isn't enough time between classes or you'll be tardy. Some teachers treat students so poorly. No compassion...that's when they need to find a job in a different line of work.
 
Because the coach isn't one of my son's instructors, he didn't know about his disease or the 504. I'm sure he's been told now, though and hopefully he will think before doing something like that to a student in the future, but probably not. I don't think he's the sensitive type.

By blocking the doorway, the coach stressed my son out and then he couldn't go until half a day later. My son has lost a few lbs since going back to school and I know it's because of this sort of thing. :(

Sensitive or not, I would demand an apology from the Coach to your son... As parents we teach our kids when they make a mistake (intential or not) we have them apologize. This adult should be held to the same standard - and he owes you one too Amy!

I have found, especially in middle school, that teachers are not sensitive. It is a tough time with kids all together. However, when I went it and sat face to face with teachers and they found out that my son wasn't a kid taking advantage of situations - some (not all) teachers became advocates for him also. One in paticular has become a family friend, a mentor and a teacher for Alex for several years now - so very grateful!

Good luck... Praying for you guys!
 
I think my son would see the coach's apology as completely insincere and the added attention to his disease uncomfortable, but I will ask him if he wants an apology. :)
 
It is a sad fact of our times that people not only do not take responsibility for their actions, but are regularly not held accountable... I can only pray that if you met with the Coach first and he could see (and hear about) the anguish that his insensitivty caused, that his apology *would* be sincere...

Good luck either way! I loathe to see kids bullied by other kids, but when an adult is involved, it pulls at every fiber in my body...
 
I hope things are settling down at school and that your son is starting to feel more comfortable this week. :)
 
Thank you all for your advice and support. Amy, I'm so sorry your son has had to go through that. It sounds like you are doing a good job of standing-up for him and doing what you know is best.
When I talked to our family counselor about my concerns, she recommended that I switch him to an online school asap because what he was going through was not good for him. He went from liking school last year to hating it this year and begging to be homeschooled. He had anxiety just over the idea of going to school when he was in the beginning stages of a flare-up.
I couldn't find an online school that would accept a student so late in the school year but, thanks to your and her advice and support, things seem like they may be getting better and his next school year may be a different story.
I had tried numerous times to explain and discuss things with his teacher and the teacher's aide. I provided them with information from the ccfa.org website. When things got worse instead of improving I started communicating more directly with the rest of the school's support staff, including them on my emails to his teacher, and giving everybody regular updates. Such as, "Nick was having tummy trouble again tonight and hasn't been able to sleep because he has been having "tummy attacks", diarrhea and vomiting. He will probably be in late tomorrow because he isn't getting much sleep tonight." Or, "It looks like the Remicade infusions may not be working anymore and Nick's doctor said to pack a bag when we go in for his appointment tomorrow because they may be admitting him." (I actually gave much more detailed medical information in that last one, this is just a brief summary).
I then talked to the school social worker, who hadn't previously been very involved with Nick but became much more so towards the end of the school year, and asked her about getting a 504 in place (she had already contacted me about an IEP but, I didn't know if it was just for his reading disability). She told me they were working accommodations for Nick's Crohn's into the IEP for next year. She really has been wonderful and I should have gone to her or some of the other support staff earlier than I did. In general, the support staff seemed much more understanding than his classroom teacher and I have hope that all the effort they have put into helping Nick throughout the next school year will turn things around.
Unfortunately, my hope that the Remicade could still be working is pretty much gone now. Nick and I have seen it for a while and his new doctor just had a blood test done to check for it's effectiveness. His next infusion was cancelled. We'll know more next week from the scheduled Dr appt. We've done Prednisone and it isn't so pleasant. Anyway, my hope that he will be healthy enough to not miss so much school next year and will be able to have more "normal" attendance and participation so that there won't be any reason for the same issues to come up with the new teachers as he moves onto middle school are somewhat slipping away. I guess there is still Prednisone and we will know about the other options soon but, if things aren't much different in the way of his teachers and school and health at the beginning of next year I have some online school recommendations.
 
Hugs sorry about the remicade
I am glad things improved at the school.
DS had to switch off remicade
He is now on humira so there are other options.
Good luck
 
Sorry to hear the Remicade isn't working. I know how stressful school issues can become and how that is on our Crohn's kids. I'm glad to hear that there are some school staff out there listening! I hope your son can find the right meds to work for him soon. Hang in there mom!

PS. Is there any option for you to homeschool him without an online school?
 
THat's a shame the Remicade isn't working for him. I hope whatever they choose to do next does the trick. Good luck with the appointment!
 
Sorry the Remicade isn't working, hope all goes well at appt and the next med works wonders and he can just enjoy school.
 
Hi Ann. I'm sorry things are so tough right now.

It sounds like you already have a plan to modify the IEP, but as a 6th grade teacher I just wanted to throw my two cents in. I am appalled at the treatment you and your son received from his teacher. Not only is it morally wrong, it is also illegal. I'm from California, but there is federal law protecting your child through the Americans with Disabilities Act.

I would include the district in your plans ASAP for the coming school year. Usually there is a supervising district nurse. You can request/demand that the head district nurse attend the 504/IEP meeting. I would not wait for your scheduled IEP meeting (tri-annual?). You have the legal right to call a meeting whenever you want. It sounds like you have a good relationship with his case carrier for the reading disability. Special Ed. teachers can be wonderful. I would set it up before school starts and have all the t's crossed and the i's dotted before the first day.

I know you probably don't have the energy to deal with his former teacher, but I think the school district needs to know of his/her rigidity and lack of compassion. When the head nurse hears what happened with the former teacher, oh boy!

Is it possible to forgo the elective and have independent study hall first period so your child can rest a bit?

I LOVE the idea of a laminated bathroom pass. It might hold even more weight with a substitute if it's signed by the principal.

You are not overreacting- you are protecting. Be the mama bear!

Kimberly
 

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