need advice dealing with school - VERY LONG

[Guest guest]

Cameron was recently diagnosed JIA and we have now had 2 rounds of shots of

Enbrel (25mg) & Methotrexate (20mg).

I need some advice on how to handle a situation at school. This is going to get

long, so please bear with me. Cameron DOES NOT have an IEP or 504.

A little background... Cameron also has Sensory Processing Disorder. It is

often mistaken as ADD or ADHD. He is in constant motion and gets distracted by

the smallest things (the way the light reflects through a window, the sound of

another child tapping a pencil, etc.) We also did testing and found that he is

highly gifted.

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Here is the email I sent to his teachers and guidance counselor:

Cameron had his shots on Saturday again. This time he has complained of some

stomach discomfort and is tired and moody. He came home and is sound asleep.

This is not typical behavior for him! These are all side effects of the

medications he is on. From what other parents have told me, these side effects

can get worse as the medicines build up in his system. They can last up to 3-4

days after the shots.

To look at Cameron, you could probably never tell he has anything wrong. That

is why this is sometimes referred to as the " invisible disease " . Also, he may

be fine one day, then miserable the next... or from hour to hour.

Before he left for school this morning, he said his tummy didn't feel

very good. We talked about it and I determined it was not bad enough to keep

him home, but told him if it didn't get better to let someone know and they

could call me to come get him. He said he had a sub for reading and his stomach

was still hurting so he told her. He

said he was told " If you're talking, it must not be that bad so go do

your work " . He also said that when he went back to homeroom, she

reported that he wasn't doing his work and he had a card turned and had to

finish the work at recess. I know Cameron has problems getting his work done,

and yes, he is a smart boy and could have figured out how to use this to his

advantage... however, being so close to his injections and also complaining

before school, I tend feel he was being honest.

Granted, I only know his side of the story. I do not want this to

become a crutch he can use to get away with things, however I want him

to feel comfortable saying " I don't feel good " .

When there is a sub, is there usually anything mentioned that a student may have

some side effects from strong medications he is on? If not, do you think it

would be a good idea for me to make something to keep in Cameron's binder

stating he is on these medications and may have side effects. If he has a

substitute and starts to feel bad, he could show them the letter.

I have a brochure " When your student has arthritis, a guide for

teachers " from the Arthritis foundation to share and will bring that to school

soon. In the meantime, there is a website with much of the same information:

http://www.arthritis.org/ja-school-success.php

One thing I saw on there is: *Listen and observe the student. Most do

not complain and may even hide symptoms of the disease to appear like

their peers. Watch for body language (such as facial expressions or

rubbing joints) that may indicate the child is in pain or experiencing

fatigue.

I'm sorry if I sound like I'm rambling. Please bear with me. This is

all new to me and I'm trying to not only figure out what's going on with his

body, but trying to understand how to help him have as normal of a childhood as

possible.

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Here is the response from his homeroom teacher:

It was reported to me by the sub that he was interacting with other

students and he must have been feeling okay to do his work. I will give his

card back. He also turned a card for me yesterday for not

completing an assignment.

I will monitor the situation. It is a regular occurrence that

assignments are not completed by Cameron.

If he doesn't feel like completing his assignments due to physical

issues maybe we need to update his IEP to determine alternatives. One - What

symptoms prompt us (teachers) to not require Cameron to finish assignments at

that time. Two - what alternate activities should he be engaged in when not

doing the assignments. Three - when does he do the work. (this was also copied

to the guidance counselor and prinicpal and he asked them to please advise).

Thank you, Ms. Young, for the note. We will work out a solution that is in

Cameron's best interest.

***Here is the response from the reading teacher that was absent:

It was also report, by a note, to me that Cameron spent reading time

looking at a magazine. It is my opinion that if he felt well enough to

look at a magazine he could have done the work required by the teacher.

I also feel like he should not get his card back because there was no

justification for not doing his work.

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If you have made it this far, God bless you! Please let me know your ideas on

how to approach this at school. Here are my thoughts so far as to a response:

And this is why I sent the note to all of you, to get everyone's side of the

story. As I stated in my email, I only had his side of the story and apparently

that wasn't the whole story. I'm not sure what else I should do except to

contact you to find out what's going on when he comes home saying things like

that. Please do not think I was sending the email to say the situation was

handled all wrong and that he should get his card back. I was putting what he

said out there so you would know where I was coming from. Again, as I stated in

my email, I do NOT want this to be a crutch that he uses to get out of doing

things, but I put the information about his arthritis in there to help make you

aware that even though he looks like he is perfectly healthy, he's not.

I realize he has not been completing assignments and he told me he had a hard

time completing the testing on time. I have taken privileges away from him at

home and he knows he will not get those back until I see that his behavior has

improved. I feel like he has given up on school and he doesn't care if he does

the work or not. Is there any way we can find a way to let me know daily if his

assignments are getting done? I know teachers are strapped for time and it's

impossible to get what you need done in a day and I would rather NOT have to do

this route. However, I need to know more than just on Friday if the work is not

being done.

About updating his IEP, he doesn't have an IEP and as (the guidance counselor)

and I discussed, he probably will not qualify for an IEP. She had mentioned

maybe getting a 504 meeting started for him and I'm not sure where she is in the

process of that. She mentioned she had talked to the school psychologist about

it.