- Joined
- Jan 11, 2012
- Messages
- 1,134
I have popped in fairly regularly, but things have not been going great and I have just kind of pulled away and tried to do my best at keeping Devynn healthy.
She started a new school in Sept (middle school, 7th grade). I had contacted the school/ principal/ vp in the summer to advise them of her health problems and give them some information etc. I spoke to her teachers the first day and was told by the principal and VP that all of the teachers would be told of her IBD and told that she needs to be allowed to use the washroom when she needs it, no questions asked. We were also told she can sit out of phys-ed if needed and could go to the office as needed. She has missed a ton of school because of probs with her IBD. She has had 3 different home room teachers since Sept because the regular teacher was off on matt leave. The first teacher left around November because she couldn't control the class. The next teacher stayed until the beginning of March, when the regular teacher came back. Like I said I spoke to all her teachers and let them know that if she needs the washroom, she CAN NOT wait. They all told me and her, that if she can't get their attention for whatever reason, or if its an emergency, she can just leave the class room. I also told her that if she is ever in a room with a supply and they won't let her leave, she has my permission to leave, use the washroom and then go to the office and let them know she had to walk out. Things on that end have been fine. All of her teachers have been very accommodating, until last week. She needed the washroom and her *new* teacher told her she was not allowed to leave until she finished a work sheet. She couldn't finish because she couldn't concentrate and ended up waiting until lunch. She spent the entire lunch in the washroom in pain and came home after school in pain and had diarrhea for the rest of the night. I went in and spoke to the teacher the next day. She apologized and said she hadn't gotten around to looking at her medical information! ?!?!?! She had been there three weeks at that point, and a week of that was March break! I told her what the problem was and told her she might want to do some reading. But that Devynn has MY permission to walk out if she is ever told she has to wait again. She said this would not happen and that she would apologize to Devynn. She never did.
Along with the stress of a new school etc, she started having some problems with learning. She didn't open up to me, and the teachers didn't let me know anything was wrong. This all came to a head about a month ago when she had an assignment to write 5 adjectives describing characters in a book the class had read. She admitted (after hours of crying etc) that she is having problems and over the last month or so it has become apparent that the problems are a bit bigger than we first thought. We have been to her ped who said her IBD is being exasperated because of all the stress. She said we have to get the stress of the school etc under control and then we will be able to get her IBD back under control. I am awaiting an appt to be put on a special meeting with the school to have her tested for a learning disability. I was told the wait list for the testing is a year long. Unless I can have her tested privately, which I cannot afford ($2000- $3000).
I don't know what to do. I feel like I am failing her because I can't afford the private testing. I feel like a year wait is going to be so bad for her health. I am going to try to push for this BECAUSE of her health, but I'm not sure if it will help at all. She has been so sad, she doesn't want to hang out with friends, or do anything. She feels like she is stupid and told me she didn't tell me she was having problems because she didn't want me to know she was stupid
My heart hurts for her. I have told her she is NOT stupid, but she is not hearing it.
On a good note... my child who had SUCH a hard time swallowing pills just a few years ago... can now swallow TWO pills at a time!! She has always watched me swallow pills and I'm one of those people who can take a handful at once (I am on 3 meds) and has always asked how I don't choke. I have told her I am so used to it, it just seems normal to me. A few nights ago she decided to try to take two of her tiny pills together and did it! She yelled to me so excited! Then the next day she decided to try her Sulfasalazine, two at once. These are NOT small pills, and she did it no problems at all! She was so proud and I told her how proud I am. I can't believe how far she has come with them. We started off about 2 years ago, swallowing tic tacs and mini m&m's when she had to start swallowing pills. She would cry and scream, she was so scared. Now she is a pro! lol She told me this morning, "Mom, I don't really care about taking my pills now.. its like I have to take one in the morning and two at night.. piece of cake" She takes two sulfasalazine in the morning and two at night, along with two migraine preventatives. I am so proud!
I will pop in and read/reply more. I have missed everyone!
Samantha
She started a new school in Sept (middle school, 7th grade). I had contacted the school/ principal/ vp in the summer to advise them of her health problems and give them some information etc. I spoke to her teachers the first day and was told by the principal and VP that all of the teachers would be told of her IBD and told that she needs to be allowed to use the washroom when she needs it, no questions asked. We were also told she can sit out of phys-ed if needed and could go to the office as needed. She has missed a ton of school because of probs with her IBD. She has had 3 different home room teachers since Sept because the regular teacher was off on matt leave. The first teacher left around November because she couldn't control the class. The next teacher stayed until the beginning of March, when the regular teacher came back. Like I said I spoke to all her teachers and let them know that if she needs the washroom, she CAN NOT wait. They all told me and her, that if she can't get their attention for whatever reason, or if its an emergency, she can just leave the class room. I also told her that if she is ever in a room with a supply and they won't let her leave, she has my permission to leave, use the washroom and then go to the office and let them know she had to walk out. Things on that end have been fine. All of her teachers have been very accommodating, until last week. She needed the washroom and her *new* teacher told her she was not allowed to leave until she finished a work sheet. She couldn't finish because she couldn't concentrate and ended up waiting until lunch. She spent the entire lunch in the washroom in pain and came home after school in pain and had diarrhea for the rest of the night. I went in and spoke to the teacher the next day. She apologized and said she hadn't gotten around to looking at her medical information! ?!?!?! She had been there three weeks at that point, and a week of that was March break! I told her what the problem was and told her she might want to do some reading. But that Devynn has MY permission to walk out if she is ever told she has to wait again. She said this would not happen and that she would apologize to Devynn. She never did.
Along with the stress of a new school etc, she started having some problems with learning. She didn't open up to me, and the teachers didn't let me know anything was wrong. This all came to a head about a month ago when she had an assignment to write 5 adjectives describing characters in a book the class had read. She admitted (after hours of crying etc) that she is having problems and over the last month or so it has become apparent that the problems are a bit bigger than we first thought. We have been to her ped who said her IBD is being exasperated because of all the stress. She said we have to get the stress of the school etc under control and then we will be able to get her IBD back under control. I am awaiting an appt to be put on a special meeting with the school to have her tested for a learning disability. I was told the wait list for the testing is a year long. Unless I can have her tested privately, which I cannot afford ($2000- $3000).
I don't know what to do. I feel like I am failing her because I can't afford the private testing. I feel like a year wait is going to be so bad for her health. I am going to try to push for this BECAUSE of her health, but I'm not sure if it will help at all. She has been so sad, she doesn't want to hang out with friends, or do anything. She feels like she is stupid and told me she didn't tell me she was having problems because she didn't want me to know she was stupid
My heart hurts for her. I have told her she is NOT stupid, but she is not hearing it. On a good note... my child who had SUCH a hard time swallowing pills just a few years ago... can now swallow TWO pills at a time!! She has always watched me swallow pills and I'm one of those people who can take a handful at once (I am on 3 meds) and has always asked how I don't choke. I have told her I am so used to it, it just seems normal to me. A few nights ago she decided to try to take two of her tiny pills together and did it! She yelled to me so excited! Then the next day she decided to try her Sulfasalazine, two at once. These are NOT small pills, and she did it no problems at all! She was so proud and I told her how proud I am. I can't believe how far she has come with them. We started off about 2 years ago, swallowing tic tacs and mini m&m's when she had to start swallowing pills. She would cry and scream, she was so scared. Now she is a pro! lol She told me this morning, "Mom, I don't really care about taking my pills now.. its like I have to take one in the morning and two at night.. piece of cake"
She takes two sulfasalazine in the morning and two at night, along with two migraine preventatives. I am so proud! I will pop in and read/reply more. I have missed everyone!
Samantha
