Having a hard time getting son's school to support him when absent in Canada - any tips?

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Dec 13, 2011
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Hi.

Its been a while since I posted.

My son was diagnosed with severe Crohn’s in 2011 at 12 yrs old. It took almost a year to get it under control and he is now on Remicade - which for the most part is working. Remicade allowed him to get back to normal weight and height. He is a big healthy looking boy - not sick on the outside. He has, however, suffered off and on since diagnosis from acid reflux, nausea and stomach pain - at times so debilitating he has missed up to a month of school. This has usually been brought back under control with a change in dosage to his Prevacid scrip and adding a Probiotic - until now.

As a result of his missing school, I had an IEP implemented (we do not have a 504) in grade 8 to ensure that he was able to get homework sent home and continue with his studies so he would not be left behind. The school and teachers were awful (if I am kind) including one Math teacher who would not send home a text book since she claimed not to have enough to spare and suggested he could google some Math problems instead - WTH?

We met with the staff of the high school last June to ensure a smooth transition to grade 9 and maintain his IEP. I was overjoyed to receive such promises of help and that he would be supported going into grade 9 - mostly with easily accessed web based tools.

In October of 2014 my son started to have abdominal pains and nausea off and on again and had patchy attendance at school. His GI doc wanted to do some scopes to see what was going on - unfortunately the wait time is lengthy. My son’s condition continued to decline, and I believe was worsened by the fact that the school was not supporting him as promised (very few web based tools missing homework) and put enormous pressure on him (and me) to be at school for culminating tests and exams.

In January he got to the point where he could not go to school at all. After frantic calls to his doctor he got his scopes and there was much acid reflux and ulceration and irritation in his stomach. He has been taken off Methotrexate, as it was thought to be causing irritation. He then switched to Omeprazole and has added Zantac and still seems to be declining. He can’t eat in the morning without pain and is extremely fatigued. He is awaiting a decision from his doctor on something else to try.

Despite this he gets up every morning and tries and then fails to go to school. He does the homework that he is aware of at night when he is feeling better. In the meantime, his IEP is not being respected at all. Work sent into the school is being marked and held (not returned) until he comes back to school (he’s been out for 2 months). The school seems to be treating his absence like truancy and keep threatening that he needs to be at school 60% of the time or he won’t get his credits - which I of course can’t guarantee. I have asked for alternatives e.g., online courses - there are none in our school board. I have asked for blended learning (online and at school) but its too difficult for the school to implement. I have asked for teacher support for Math and am told I am on my own. The only thing they are good at is saying no.

Make no mistake, my son misses a TON of school, but always keeps up at home and though he needs extensions, he does most of the work and tests and exams. I teach him some of the lessons, but for the most part he works independently to get caught up. and he has a tutor for Math and I enrolled him in an online Math course at a private school. We want him to learn. He will need a job, with benefits as he will require a lifetime of medication.

The Principal now wants to speak to the medical staff that support him to figure out a long term plan for his education - which my husband and I read as - we don’t want you here, go get home schooling. My son wants to go to school - it is important for him to be with his friends. Home schooling will isolate him. It is the opinion of his doctor, social worker and his parents that he remain at school. We don’t believe we are asking alot of the school. We know at some point he will heal and be ready for school again.

Has anyone in Canada -we are in Ontario - had success with their high school in getting curriculum and teacher support for a medical disability when your child has frequent or prolonged absences? I feel we may be steps from lodging a human rights complaint.:ybatty:
 
Have you sent the school education materials from ccfc ? Letters from his docs stating what crohn's is and what he needs ?
I would try to speak to a ccfc rep and see if they know which office to contact in Canada .
Since he has an IEP you can write a letter of understanding to the IEP corrdinator stating on dates such and such for your child your understand the school is not wlling to do xyz as stated in his IEP and if you do not recieve a response by date abc then you are accepting the facts stated above to be true ......
Good luck
 
Hi there. Your story is tragic (as are many on this site). I really can't help with your issue. I'm writing more as an expression of support/sympathy. You and your son MAY have to be the trailblazers here.

Now, with regards to education... I have that many diplomas I could wallpaper a small room. (very slight exaggeration) ... I had a 20 plus year career in IT, including time as a college instructor. This disease came along, and all of that... the education, the career, it all became history. I am blue collar through and through now... and loving every minute of it. My point? The 'top' priority is his health. Concentrate on it... focus on getting him well. High school? Worst case scenario is that it goes off the table for the present, and he picks it up later in life. Correspondence school, home school, online... all sorts/sundry options available. Get him well... then get him educated. Battling two issues at the same time MAY not be in his best interest. Stress plays a role in this disease, and there may be stresses.... like him feeling that his illness... not being able to attend.. is partly his fault. I recall spending hours in the bathroom... or multiple aborted attempts to just drive to the hospital (my Mom had a heart attack).. Stuff like that really weighed me down... even though I 'knew' I couldn't do anything about it. I think us males are wired that way. And being a teen... a teen male... in high school is stressful enough. Add in a disease like this... it certainly doesn't make for an idyllic situation. Just my 2 cents worth.

Final thought... if his current treatment isn't working, and you are looking at alternatives, do some research on LDN. If it worked for him it would certainly minimize the possible complications...
 
Thanks MLP.
Yes we've done all that even contacted the CCFC. The IEP coordinator is actually the principal - which is part of the problem. I could write a whole new thread on how badly they botched the IEP but I will not bore you.

Kev, thanks for reaching out - your support means alot. I think we might be trail blazers too - sigh.

I know what you mean about stress and teenagers. My husband and I do not push him - he wants to go. He wants to keep up with his friends. He knows its ok with us if he drops his course load but does not want to be held back. He is trying his best to be a normal teen even though he is not. He has missed most mornings this semester and he has finally agreed to try the online course since it does not matter what time of day he does it.

Remicade is working very well but not perfectly - trust me he was very sick before and a tough case to get under control. I know about LDN but don't think it is for him right now. His doctor is trying to fix his pain by treating his ulcerated stomach, which until the scopes revealed this problem everyone has been chalking up to stress. I know there is a connection, but the physical issues need to be addressed also.

He is amazing. Every morning he gets up and tries to go to school. He will be buckled over in pain in the morning and adamant that it is not stress. But he would have admittedly less stress if the school was more supportive.
 
Wills mom,

Hi, I have a daughter the same age and diagnosed or came down with symptoms about the same age as well.

Our daughter longs to see her friends too, but her inflammation has kept her home. she has only attended two months of ninth grade. She is just having a hard time with it all.

One thing her school offered was to take some classes on line and maybe one at school. They have been very supportive but my daughter just cant do anything right now. It was good to hear what Kev said. I need to back off of her again and take it slow.

My heart goes out to your family and especially your son.
 
Thanks Hope,

I'm sorry to hear your daughter is in a similar boat. It is heartbreaking to see our children isolated from the other kids, when hanging out with each other it is such a big part of their lives at this age.

Our school board does not offer online classes until 11th grade. You can request a seat in an online class from another school board (I asked in January) but our principal hasn't agreed to that yet (probably because it comes out of his budget) - and its too late for this year any way. My son has been given no alternative but to keep up on his own or fail - that's what gets me.

I've found a private school that offers online courses - but we have to pay fees. My son has just started one. The best part about these courses is that he has 18 months to finish them and writes all the tests on line and can have his final exam proctored. I have suggested to him that for next semester he might do his morning core classes on line and go to school for afternoon easier class.
 
I am sorry about your situation. How horrible! You mentioned the school wants medical documentation, and you feel they might be trying to use this to keep your son out of school. But, if your medical team feels public school is the right choice for your son, then wouldn't the school have to comply? Education is a right and they have an obligation to provide it. I don't believe homeschooling could be forced on you, especially if the GI and social worker say your son should be in school as much as he is able. I would bury them in medical documentation, if it were me.

I wish you well. Let us know how it goes.
 
Thanks for your support. The medical team agree with me, and have said as much - documented - not worried there.
I know they can't force home schooling but he will fail if he does not have accommodations made for his illness. That is the issue. The have done nothing and it feels as if they are looking under every stone to try to find an excuse not to accommodate him, because then they'd have to stop treating him like every other kid in school and start supporting him. It is really really odd because as you say education is a right.
 
My husband is a teacher in bc. Schools have a legal obligation to provide your son an education based around hisIEP. My husbands advice is that if the school is being less than helpful,then go directly to the school board. They are not just there for the teachers. The principal obviously has no desire to help, but the school board will, sadly mainly because they don't want rumblings among the community.

Take all IEP documentation, notes from docs etc, as much proof/ back up as needed. Go and ask to speak to someone do not be fobbed off with hVing to mKe a appointment. At this point completely forget about the school, only deal with the school board.
Hope this helps.
 
We had some issues with one of my son's classes while he was in high school as well, the problem wasn't related to crohns but I encountered some of the problems you're facing.

If you can't get the principal on board, do contact the school board - and I suggest copying the principal on all correspondence (at some point, if ever possible, you do want him/her to be on your side, so try to move up the ladder without leaving the principal out of the loop plus it puts pressure on him/her to do something as they are being dragged along anyway :lol:), also contact the Ministry of Education - again, now include trustee and principal in correspondence... In our situation, I hadn't expected much given all the red tape yet, much to my surprise, the issue was resolved within a couple of months.

Also, online high school credits are available - but, as you may have learned, our 'virtual school' has a separate principal (I suppose it's run like a separate school), you may need to get this principal on board as well (I also copied this principal in my correspondence).
 
Thanks Tess,

I agree with you and have been playing climb the bureaucratic ladder albeit faster than they would like - this is so sad. Its a tough balance. I don't want to make my son's experience at school difficult for the next few years, but I need to hold them accountable.
 
I am potentially facing this same issue. My d is in grade 8, in the TDSB & the same school all her life. She hasn't needed an IEP as staff & teachers have all been there for support. We are being proactive, creating an IEP now for her due to my biggest concern, the absences. Because it is a recognized disability the board will put certain things in place for her like transportation even though her school is out of the area. D misses most mornings, sometimes whole days because her symptoms aren't manageable still.

I have a meeting with her new principal at her high school next year in May in preparation of the transition. I'm not sure what part of Ontario you are in, but if you are in a large area like Mississauga, Barrie, or Toronto, contact your superintendent if you aren't getting anywhere.

Khan Academy is great. My grade 9 daughter uses it to bring up her math grade. I completely agree, socialization is very beneficial. Sending you good wishes this can be fixed.
 
Thanks SM,

Sorry your daughter is having a tough time with her symptoms and attendance - I feel for you - so much. It is tough to watch especially when you know they just want to be a normal kid and go to school.

You are smart to get the IEP in place and meet with the High School. We did that also and felt really good afterwards that my son would be well supported - but he hasn't been. We've also endured several lectures on how "he's in high school now and its different"... "attendance is necessary to the integrity of the credit"...etc. I'm sure its the same standard lectures you get for truancy - painful.

I'm not sure if its because he is "non-identified" and has not gone through official IPRC process. When I asked in elementary school we were told he didn't need official IPRC identification (hell they didn't even want a doctor's note). But I am questioning that now. I have just recently gone back to ask this question of some of my contacts I have outside of the school - its crazy.

You will no doubt be received with open and loving arms at the transition meeting with the high school and be reassured that they have you covered. If I were to do our transition meeting over, I'd give specific examples and ask how exactly they'd support it - and ask to see some of their teachers websites. I'd also make sure you see and have input into the revised IEP as is your right - 30 days after your daughter is in the new school to make sure they took it seriously and have your daughters needs and accommodations listed properly.

Thanks again for your kind support.
 
I'm sorry about all that has been going on for you and your son.

I am a high school teacher with Crohn's, and I can tell you, it is really hard going into work some days. I missed a lot of time after I was diagnosed, and three weeks this year for surgery. I'm home sick today as well actually. I feel for your son, I am in the same boat, just on the other side of the classroom.

Sadly, I have no stellar advice for you. My school is really supportive for kids who are absent for illnesses, and we have a lot of them. If you are having no luck with the school itself, perhaps going to the school division, and asking them what their advice would be to assist your son.

Good luck! I hope all goes well!
 
Thanks Wallace,

I am very sorry you too are in this boat and hope you are recovering well from your surgery and that it brings you some relief. I am glad to hear of other schools that are supportive of kids who are absent due to no fault of their own. Thanks for your advice - I am definitely not done going up the ladder.
 
We have troubles with this as well. My son is in grade 7 so he doesn't start high school until September. He has missed large portions of the last 3 school years. In grade 5 and 6 he was in a private school and it was easier to get the school work sent home from there. This year he is back in public school and has and IEP and a ministry designation as chronically ill but we struggle to get the work sent home. For some reason it is always math that gets sent home and NOTHING else. The school seems set up to deal with a child that is going to be ill for x number of days (homebound teacher etc.) but it is not good at dealing with a child that will be there one day and not the next with no sort of predictability to it. I don't know what the answer is. It is a difficult situation. We have also had comments on report cards that talk about the absences in a bit of a negative light, pisses me off because he can't help it!!!

We also use Khan Academy. It is great but it doesn't solve the situation.
 
Haha Twiggy - I love report card time with the absence comments - I usually open a bottle of wine before I open the report card. My son won't even look at it any more. Its good to know about Khan Academy. Fortunately we have a resident Math whiz on call who can help out where needed.

The way I see it the problem with our school board is multi-pronged, and caused by ignorance in not knowing what to do (even though we've told them in IEP format) and a sense of knowing better than the parent what is good for the child.

First, the school does not want to set precedent by doing anything differently, and wouldn't dream of asking their teachers to do something outside of their contract - even if is not causing undue hardship.

Second, our kids may not look sick on the outside when they return to school, and the school then are reads it as school advoidance or truancy. In the last three years I have had tons of not helpful advice suggesting maybe my husband should handle mornings so my son will go more often (cause my boy has his mommy wrapped), he should eat better, he should go to bed earlier, he should start CBT because its all in his head, if he could just come to class 60% of the time it would be better. Or my personal favorite - he should focus on getting better and then he can come back to school when he is well - what about the definition of chronic illness did you miss?

Finally, I do not think we have sufficient laws in place to protect the rights of kids with chronic illness to education. It is most definitely a human rights issue.

Thanks for letting me rant and thanks for your support everyone!
 
Hello willsmom,
I had to learn to be a very strong advocate in the educational system for both of my children for reasons that were not related to physical health. I think that part of what you may be coming up against is that your child does not fit the 'usual' reasons for the IEP so the school staff are unsure how to deal with the situation.

I found it best to educate myself about what the provincial policies state should happen with special needs students and then to enquire from the school how they proposed to implement the policy for my child. I initiated and attended meetings well-prepared to help them 'discover' what the school's responsibilities were in meeting the educational needs of my child. I did this in a non-confrontational manner as much as I was able to do so.

I found that the school was more willing to help if my child and I had some specific suggestions as to what we felt was required. In your case, for example, requesting that the teacher sends home the learning objectives and plan for the how the class will be meeting those objectives for each new unit on the day that he/she starts the new unit if your child is not in attendance that day. Also requesting suggestions on ways that your child can continue the classroom work at home with supervision from the teacher and alternative ways that your child can show his mastery of learning the material if he cannot attend for exams, etc. These things need to be in the IEP and IEP meetings should occur frequently while you are setting up these accommodations.

Below are links that may help you. Try to learn the hierarchy for special education at your school and up through the administrators of the school board. I got help at the assistant superintendant level at our school board and she then approached the school to help them understand what their responsibilities were.

I am not from Ontario but a quick look at the provincial website turned up these documents. Your child would fit under the physical disabilities section due to chronic illness.

Good luck.

http://www.edu.gov.on.ca/eng/general/elemsec/speced/guide/resource/iepresguid.pdf
http://www.edu.gov.on.ca/eng/policyfunding/ocup/documents/speced2002.pdf
http://www.edu.gov.on.ca/eng/general/elemsec/speced/guide/specedhandbooke.pdf
 
Thanks Happy - you are right. I think a "non-traditional" IEP throws the educators for a loop - but its not the first one they've seen - and certainly don't think it will be the last. You could approach it as an opportunity to make things simpler for dealing with kids with chronic illness in the future. Unfortunately, our principal is very defensive though. If you ask for something that isn't happening (like getting assignments returned) he goes on a tirade about how they are doing as much as they can do and that he is sorry I don't appreciate it - very sad.

Thanks for the links, I have seen all that documentation as we had to develop the IEP last year so he could get work sent home. I am "playing the game" as you say in as non-confrontational manner as possible but these people have wasted so much time this year already.
 
Willsmom,
sorry again to hear all that you have confronted. You have all of our support!!!!!
Hopefully you will soon get the response from the school you need soon.

Your son sounds like such a strong young man. he is pushing himself forward and there is a lot to be said for that. Plus he has a mother who is such a great advocate for him. You are doing all that you can to help him... he is very blessed.

I know this is such a hard transition for our children and us. We are not sure what is ahead, but working on school is great if he can.

take care
 
I'm glad/relieved to hear the Remicade is working... As for the ulcerated stomach, I don't know if that is part N parcel of what he is dealing with, or an offshoot/side effect of his drugs. I know that the 5-ASA I was on caused me such grief with heartburn/stomach acid I was taking Nexium and Zantac like they were candy. I really didn't know how bad my side effect issues with 5-ASA were until I came off it. I've got a drawer full of Nexium, etc., gathering dust. Haven't needed a single pill/treatment since my 5-ASA went away. I can eat pizza with extra pepperoni, hot banana peppers and jalopenos AND not so much as belch. Anyway, I digress... Could luck with everything. It will all workout
 
Hope - thanks! The school says they are looking at ways to help him now - I hope so.

Kev thanks - Glad to hear you can eat all the good stuff! That is living!! My son loves that the same things.

I'm not sure anyone knows without a shadow of doubt why his stomach has been so problematic. Early on in his treatment my son took Sulfasalazine which also really bothered his stomach after a few months. Once removed problem solved - but he was still on prednisone at the time.

Hoping the recent meds change helps too. His stomach has always caused him problems and was the first indication that something wasn't right before diagnosis.
 
As far as work have you suggested they email a list of what was covered ?
Does the teacher have a website listing the weeks homework etc??? Many school do ..
Maybe it's not sending the work but the how that is time consuming for them..
Things to think about.
We did PDF by email of worksheets .
Etc...
 
Yes - although it is the digital age we are not picky on how the work comes home. He has 2 classes where there are web sites - one better than others. One class where there is a website but you can't follow it. And one class where the work is emailed or I pick it up in an envelope. I told them they could write it on the back of a napkin if it was easier.

The issue is getting it consistently in order to keep up with the class and prepare for tests. Right now it seems up to the whim of the teacher and he is often missing content when it comes to testing. His needs aren't properly documented in his IEP - despite asking numerous times. I will give them one last try.

The principal spoke with the me and the medical team yesterday - I hope now he understands my son's condition but I'm still not sure that he does. He did seem more open to looking at ways to support my son now - but I wonder. It is too late for this year. Hopefully they listen, have learned and will do a better job next year.
 
Haha Twiggy - I love report card time with the absence comments - I usually open a bottle of wine before I open the report card.

I must try this! I also love the suggestions on how to get my son to school more regularly, ours usually come during the parent teacher interview. I think the suggestions must come from good intentions but it really spells out the lack of true understanding for the situation.


:wine:
 

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