- Joined
- Dec 13, 2011
- Messages
- 52
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:
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:
, 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.
