Re: CF school issues

[Guest guest]

Please talk to your social worker. I know, from our last hospital stay, that

they cannot fail him because he missed too many days. I also know, as a

teacher, that they are supposed to send his assignments to the hospital with

him.

Teachers should make up their lesson plans in advance so there shouldn't be a

problem with telling him in advance what he will be doing. Our social worker

has tried to get us to file a 504 at school but we haven't yet. The more I

hear on the cf sites, the more I think I am wrong about this. is still

in Middle School, but I had wanted to wait until high school to file it. We

have meeting with cf parents of inpatient cfers on Wednesdays when we are in

the hospital. At the last meeting, this was a topic of discussion and everyone

tried to tell me to complete this now. They said that sometimes just telling

the principal that you were going to file the 504 would get their attention

because they hate the record keeping and accountability that goes along with

it. Try telling the principal if you don't have a social worker that you would

like to have a 504 and IEP which is an individual education plan. Normally

IEP's are for special education students, but they are also done on students who

miss a lot of school. Call your doctor tomorrow and talk to the social

worker if you have one. If not, there is more than likely a special education

coordinator for your schools. Usually they have an office in the Central

Office.

Call the coordinator and tell them you want a 504 and IEP on your son NOW. Do

not let them give you a run-around about it being too late in the year.

IEP's and 504s do NOT have to be done in the beginning of the year. They can be

done, and are usually done, as soon as a problem arises. There is no way to

predict the future. You cannot determine a child should be in special education

if that child has not been in you class before and not had an IEP before.

Good luck and hope this helps!!!!

Love and hugs,

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

By the way, please tell me that you live no where near me. That is the only

way that I will be stopped from going to the school and asking what they think

they are doing. Coughing in class? Excuse me. CALL THE SUPERINTENDENT

TOMORROW!!!!!!!

FILE A COMPLAINT AGAINST THE TEACHER, REQUEST TO BE HEARD AT THE NEXT BOARD

MEETING, BUT... BE SURE YOU HAVE FOLLOWED THE CHAIN OF COMMAND. Now that is

something I would have a great difficulty doing. But it must be done before the

Board can hear your complaint. Talk to the teacher, but don't expect too

much. Then talk to the Principal, and also, don't expect much cooperation.

Then

you are free to contact the Superintendent. After that, look out School

Board. Please let me know if I can help. I am more than willing to, as either

a

parent of a cfer or a licensed, certified teacher.

This is ridiculous.

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

Sounds like discrimination against the handicapped to me; out west here

they assign a home teacher who comes to the house to help the child cat

ch up--anything to avoid a setback! He really needs a 504 plan, with letter

of medical necessity from his doctor and/or a request for a home tutor from

the school district; this is intolerable! and shocking! Love to you and your

family with all this going on, n Rojas wcf, who was never treated like

this even back in the 1940's when there were no special laws for the handi

capped and disabled!

CF school issues

My son Josh is 15 wcf. He is in the 10th grade this year. We have

faced a few new issues and though I have looked over the IDEA and

section 504 plans, I am lost. The sites I found all in legal terms

and went right over my head. I have a few questions that a few of you

might be able to hepl me with.

1)My biggest concern. Josh has been sicker than usual this year, he

has missed a lot of school. In fact he was in the hospital when we

got a message on the answering machine saying that he has failed the

first semester because he had missed too much school. He had doctors

excuses! Can they do this?

2)One of his teachers (biology) gives him 1-2 days to turn in make-up

work from the time he is released from the hospital. Then she starts

deducting points. This class is difficult enough for him because you

almost HAVE to be present to keep up. She doesn't understand that

sometimes when he's sick, he is too sick to do school work for the

first couple of days in the hospital. Its so easy to get behind.

3)Josh's had been having a problem with his English Lit teacher. This

is very unusual for him. He complained often but i just thought it

was a clash of personalities. After he had already failed her class

(he no longer has her), he informed me that she had kicked him out of

class for coughing. When I asked him to elaborate he said the she

told him that if he was going to continue to disrupt the class by

coughing he could go sit in the hallway. So Josh sat in the hallway

while they finished watching a movie. Then they were tested on it

later. I was furious! She could of tactfully asked if a little water

might help but she chose to emberass him in front of the entire

class. What would you do?

If anyone could point me in the direction of some resources where I

can find out what exactly our rights are regarding some of these

issues I would be very greatful.

Thanks,

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

------------------------------------------------------------------------------

[Guest guest]

,

You know, I really have to ask - where do you live? This sounds like some

of the things that I have dealt with in the past couple of years. My boys are

in middle school.

I really dont know how to advise you on what to do. Just know that you

arent the only one.

If you would like to talk outside of the list my email is

mntecrlo@...

Vondie

CF school issues

My son Josh is 15 wcf. He is in the 10th grade this year. We have

faced a few new issues and though I have looked over the IDEA and

section 504 plans, I am lost. The sites I found all in legal terms

and went right over my head. I have a few questions that a few of you

might be able to hepl me with.

1)My biggest concern. Josh has been sicker than usual this year, he

has missed a lot of school. In fact he was in the hospital when we

got a message on the answering machine saying that he has failed the

first semester because he had missed too much school. He had doctors

excuses! Can they do this?

2)One of his teachers (biology) gives him 1-2 days to turn in make-up

work from the time he is released from the hospital. Then she starts

deducting points. This class is difficult enough for him because you

almost HAVE to be present to keep up. She doesn't understand that

sometimes when he's sick, he is too sick to do school work for the

first couple of days in the hospital. Its so easy to get behind.

3)Josh's had been having a problem with his English Lit teacher. This

is very unusual for him. He complained often but i just thought it

was a clash of personalities. After he had already failed her class

(he no longer has her), he informed me that she had kicked him out of

class for coughing. When I asked him to elaborate he said the she

told him that if he was going to continue to disrupt the class by

coughing he could go sit in the hallway. So Josh sat in the hallway

while they finished watching a movie. Then they were tested on it

later. I was furious! She could of tactfully asked if a little water

might help but she chose to emberass him in front of the entire

class. What would you do?

If anyone could point me in the direction of some resources where I

can find out what exactly our rights are regarding some of these

issues I would be very greatful.

Thanks,

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

------------------------------------------------------------------------------

[Guest guest]

Hi ,

About your son, Josh, I am sorry to hear he isn't doing so well. Does he have a

504 plan? I didn't get if he has one or you just looked into it and didn't

understand it. He should have one. Then the law is on your side. #1. You

should go to the principal regarding him failing due to missing school. If he is

in the hospital they might have a hospital teacher, depending on what hospital

etc. If not the district is required to provide a home/hospital teacher who

will come to your home or the hospital, bring him his work and help him with it.

#2 It should be in his 504 plan that he has longer to complete his work while

sick. Either no deadline or a more reasonable one. had as many days as

she missed to complete homework or missed school work. She also had a home

school teacher who came to our house when she was sick and that teacher graded

her and gave her credits for the classes he taught her. #3 Just ridiculous!

Definitely bring this to the principal's attention. She must give Josh a chance

to watch the movie at some point when he isn't disrupting the classroom. If she

has to stay after school and let him watch it then so be it. Especially since

they were graded on it. Not to mention this is just rude.

I hope this helps. In our area there is a group called TASK who advocates for

special needs kids. If the principal isn't cooperative you can go to the school

board or superintendent. If you don't understand the 504 law try legal aid.

The school will try to get away without 504 plans as they put the parents in the

drivers seat as far as the law goes, so the first step is to get him a 504 plan

if he doesn't already have one. I think there is a web site to help parents

understand it and ideas for what it should contain. Kim Payne didn't you do

this?

love,

M

Mom of Nick age 21 nocf and age 20 wcf

[Guest guest]

Very well said Elias. I am very stubborn when it comes to these issues. I

do hope all works out well for Josh. It is so unfair to him to have to go

through this. It is a wonder he is not rebellious toward his teachers as a

result

of the way he has been treated.

Love and Hugs,

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

So sorry to hear this. We have trouble with Savannah's school too. She will

be repeating the 5th grade due to all the instruction time she missed as well.

I'm not upset about that just the way they go about things. That is a long

story. We have talked to a lawyer and have gotten the paper work to file a due

process against our district. Another long story.lol Also ask your state

department of education for a copy of their Policies and Procedures for Special

Education book. This is what everybody is to follow and it gives sample forms to

look at as well. ( at least our does) In Oklahoma every parent can request one.

Savannah is on an IEP. They put all OHI (other health impaired) kids on one

here. Best of luck.

Remington

Mom to 2 w/o CF and Savannah w/ CF

[Guest guest]

,

I have to agree with Sue. I taught high school for a couple years, and

after my first semester of teaching I has more " special ed " kids in my

class than any other teacher in the school- apparently I had a

reputation of being easy to work with from the parents and special ed

teaching department. My point is, the school CANNOT treat your son that

way. It is against the law. If a teacher is discriminating, not only

can that teacher be severely punished, but the school should put your

son with teachers who are known to be willing to work with kids who have

these types of issues. You have to start making a paper trail- filing

the proper complaints and escalating up the chain of command. Make sure

the principal knows you by name and on sight. I'd also make sure they

know you are willing to sue them if necessary to get the accommodations

your son is entitled to.

I am VERY sorry you and your family is going through this- CF is hard

enough to deal with without the rest of the world making it harder.

Elias

CF school issues

My son Josh is 15 wcf. He is in the 10th grade this year. We have

faced a few new issues and though I have looked over the IDEA and

section 504 plans, I am lost. The sites I found all in legal terms

and went right over my head. I have a few questions that a few of you

might be able to hepl me with.

1)My biggest concern. Josh has been sicker than usual this year, he

has missed a lot of school. In fact he was in the hospital when we

got a message on the answering machine saying that he has failed the

first semester because he had missed too much school. He had doctors

excuses! Can they do this?

2)One of his teachers (biology) gives him 1-2 days to turn in make-up

work from the time he is released from the hospital. Then she starts

deducting points. This class is difficult enough for him because you

almost HAVE to be present to keep up. She doesn't understand that

sometimes when he's sick, he is too sick to do school work for the

first couple of days in the hospital. Its so easy to get behind.

3)Josh's had been having a problem with his English Lit teacher. This

is very unusual for him. He complained often but i just thought it

was a clash of personalities. After he had already failed her class

(he no longer has her), he informed me that she had kicked him out of

class for coughing. When I asked him to elaborate he said the she

told him that if he was going to continue to disrupt the class by

coughing he could go sit in the hallway. So Josh sat in the hallway

while they finished watching a movie. Then they were tested on it

later. I was furious! She could of tactfully asked if a little water

might help but she chose to emberass him in front of the entire

class. What would you do?

If anyone could point me in the direction of some resources where I

can find out what exactly our rights are regarding some of these

issues I would be very greatful.

Thanks,

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

Thanks to everyone who offered to help, support or gave advice. I

just need to hear that I wasn't expecting too much.

Josh has a wonderfully sunny personality. He doesn't get into

confrontations with his peers much less his teachers. I don't want

him to get that " why bother " attitude towards school. If he applies

himself 100% and then fails because he is sick, what does that tell

him? Call me a quitter, but at that age... I wouldn't bother.

It's worth mentioning.. another teen with CF went to this same high

school up until last year. He has sinced dropped out, he now smokes

and he has moved out of his families home up to Tenn. to live with

his girlfriends family. You can only pray that he is being followed

by a qualified Doctor, but based on how he is living his life now...

probably not.

I guess I should of stated in my first post,we did get the ball

rolling on this whole matter yesterday at clinic. When they asked us

what our concerns were for this visit, it was sad that we had to say

his education. The social worker was the first one we spoke too. She

intends to contact the school regarding the matter. When the doctor

made it into the room, she was outraged. She informed me that we had

an ace-in-the-hole. Our previous social worker left the CF center at

about this time last year. She became the head of social services for

the Columbia County school system here where we live in Ga. (for

those of you who asked). She has known Josh since he was 5 and knows

all of the issues a CF student faces. Between her and I we should be

able to EDUCATE a few people. I just wanted to know what our rights

were before I try to speak with anyone at the school myself.

Also worth mentioning, while 2003 was a bad year for Josh's health.

His lung functions are now the highest that they have been in 5

years. Now if we can cut the crap, he can enjoy his good health

Again, thanks to all.

> By the way, please tell me that you live no where near me. That is

the only

> way that I will be stopped from going to the school and asking what

they think

> they are doing. Coughing in class? Excuse me. CALL THE

SUPERINTENDENT

> TOMORROW!!!!!!!

> FILE A COMPLAINT AGAINST THE TEACHER, REQUEST TO BE HEARD AT THE

NEXT BOARD

> MEETING, BUT... BE SURE YOU HAVE FOLLOWED THE CHAIN OF COMMAND.

Now that is

> something I would have a great difficulty doing. But it must be

done before the

> Board can hear your complaint. Talk to the teacher, but don't

expect too

> much. Then talk to the Principal, and also, don't expect much

cooperation. Then

> you are free to contact the Superintendent. After that, look out

School

> Board. Please let me know if I can help. I am more than willing

to, as either a

> parent of a cfer or a licensed, certified teacher.

> This is ridiculous.

> Sue Pettit of Tupelo, Mississippi

> mom to (17 wocf) driving and being the most responsible 17

yo I have

> ever seen, (13 wocf) playing baseball, football, band, and

whatever

> else he can get into, and (12 wcf) into all sports,

enjoying lots of

> friends, running full speed and doing all she can---diagnosed at 8

days of age at

> LeBonheur Childrens Medical Center in Memphis, Tennessee, now

seeing Doctors

> Lyrene and Makris (and lots of other wonderful folks, of course) at

UAB

> Children's Hospital in Birmingham, Alabama

>

>

>

[Guest guest]

You have to start making a paper trail- filing

> the proper complaints and escalating up the chain of command.

Could you be more specific how to do this? Is this a letter to the

teacher, the principal? What?

jan

[Guest guest]

GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO, ! n

Re: CF school issues

Hi ,

About your son, Josh, I am sorry to hear he isn't doing so well. Does he have

a 504 plan? I didn't get if he has one or you just looked into it and didn't

understand it. He should have one. Then the law is on your side. #1. You

should go to the principal regarding him failing due to missing school. If he is

in the hospital they might have a hospital teacher, depending on what hospital

etc. If not the district is required to provide a home/hospital teacher who

will come to your home or the hospital, bring him his work and help him with it.

#2 It should be in his 504 plan that he has longer to complete his work while

sick. Either no deadline or a more reasonable one. had as many days as

she missed to complete homework or missed school work. She also had a home

school teacher who came to our house when she was sick and that teacher graded

her and gave her credits for the classes he taught her. #3 Just ridiculous!

Definitely bring this to the principal's attention. She must give Josh a chance

to watch the movie at some point when he isn't disrupting the classroom. If she

has to stay after school and let him watch it then so be it. Especially since

they were graded on it. Not to mention this is just rude.

I hope this helps. In our area there is a group called TASK who advocates for

special needs kids. If the principal isn't cooperative you can go to the school

board or superintendent. If you don't understand the 504 law try legal aid.

The school will try to get away without 504 plans as they put the parents in the

drivers seat as far as the law goes, so the first step is to get him a 504 plan

if he doesn't already have one. I think there is a web site to help parents

understand it and ideas for what it should contain. Kim Payne didn't you do

this?

love,

M

Mom of Nick age 21 nocf and age 20 wcf

[Guest guest]

has an IEP in place. In fact I am emberessed to say that up

until recently, I didn't know what it was for. His dad and I had

joint custody at the time it went into effect and I didn't even know

about the first meeting. The review was scheduled on 2/6/04. I didn't

get prior notice as it was sent to his dads house (Josh lives with me

now). I was called right before the meeting was to take place. Having

3 two year olds in my care at the time I was unable to attend. I

believe the note that was left regarding my participation on my copy

of the paperwork said " Spoke with parent and she had no concerns

regarding 's education. "

Having recently gone over my copies of the papers, it is my

understanding that an extended school year was discussed and

considered unecessary at this point. Needlessly to say, I an still

clueless in Georgia. But on my to more answers now that i know the

questions to ask...

> So sorry to hear this. We have trouble with Savannah's school too.

She will

> be repeating the 5th grade due to all the instruction time she

missed as well.

> I'm not upset about that just the way they go about things. That is

a long

> story. We have talked to a lawyer and have gotten the paper work to

file a due

> process against our district. Another long story.lol Also ask your

state

> department of education for a copy of their Policies and Procedures

for Special

> Education book. This is what everybody is to follow and it gives

sample forms to

> look at as well. ( at least our does) In Oklahoma every parent can

request one.

> Savannah is on an IEP. They put all OHI (other health impaired)

kids on one

> here. Best of luck.

> Remington

> Mom to 2 w/o CF and Savannah w/ CF

>

>

>