Re: I had to bite my tongue so hard....

[Guest guest]

I remember having that same convo exact with one of 's teachers, for us the

solution was to go back to homeschooling and she stopped getting sick all the

time not exposed to the germ load from the school but I know homeschooling isn't

for everyone.

---- osdbmom <osdbmom@...> wrote:

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

>

> Thanks, man. so helpful. I'll get right on that.

>

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

I remember having that same convo exact with one of 's teachers, for us the

solution was to go back to homeschooling and she stopped getting sick all the

time not exposed to the germ load from the school but I know homeschooling isn't

for everyone.

---- osdbmom <osdbmom@...> wrote:

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

>

> Thanks, man. so helpful. I'll get right on that.

>

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

Ha! lol I honestly dont think homeschooling would be good for her health....

she's 14, a LOT like me, and with a mouth that never knows when to stop....plus

she's pms'y a lot:)

I would trade my life for hers without stopping to blink....but the child keeps

my blood pressure high and drives me bonkers half the time.

valarie

> > conferences last night....

> >

> > " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

> >

> >

> > Thanks, man. so helpful. I'll get right on that.

> >

> >

> > (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

> >

> >

> > valarie

> > mom to 3 w/cvid

> >

>

[Guest guest]

Ha! lol I honestly dont think homeschooling would be good for her health....

she's 14, a LOT like me, and with a mouth that never knows when to stop....plus

she's pms'y a lot:)

I would trade my life for hers without stopping to blink....but the child keeps

my blood pressure high and drives me bonkers half the time.

valarie

> > conferences last night....

> >

> > " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

> >

> >

> > Thanks, man. so helpful. I'll get right on that.

> >

> >

> > (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

> >

> >

> > valarie

> > mom to 3 w/cvid

> >

>

[Guest guest]

Hi my kindergarten daughter has a 504 as well and if she is out 2 days

that week they will send out a first grade teacher to tutor her. It's been a

big help.

Sent from my iPhone

On Mar 2, 2012, at 10:49 AM, " osdbmom " <osdbmom@...> wrote:

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

> Thanks, man. so helpful. I'll get right on that.

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

> valarie

> mom to 3 w/cvid

>

>

[Guest guest]

Hi my kindergarten daughter has a 504 as well and if she is out 2 days

that week they will send out a first grade teacher to tutor her. It's been a

big help.

Sent from my iPhone

On Mar 2, 2012, at 10:49 AM, " osdbmom " <osdbmom@...> wrote:

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

> Thanks, man. so helpful. I'll get right on that.

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

> valarie

> mom to 3 w/cvid

>

>

[Guest guest]

Goodness !

Not sure I would have been so good at biting my tongue! My personal feelings

are that, if she can qualify for an IEP, it is a far better option. 504s are

not very enforceable and there is a great amount of room for teachers to

implement it the way they see fit. There is little accountability for 504s.

With a IEP, it is a Federally mandated plan and there is high accountability.

The way you qualify is as follows " does the child's problem prevent them from

progressing in the general education curriculum " ? This can be anything from

socially, behavioral issues, medical issues that may cause her to tire more

easily.....to have difficulty keeping up with assignements because of

illness......she would qualify under " other medical " . This way, the school

would be strongly held to the standards that are set in the planning meetings

and, should they cause issues, you are able to file formal complain and due

process to force compliance.

504s are ok to make simple accomodations, but if her illnesses are hindering her

ability to keep up or stay focused, an IEP would be a much better option.

Terri

Mom and both daughters with CID

>

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

>

> Thanks, man. so helpful. I'll get right on that.

>

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

Goodness !

Not sure I would have been so good at biting my tongue! My personal feelings

are that, if she can qualify for an IEP, it is a far better option. 504s are

not very enforceable and there is a great amount of room for teachers to

implement it the way they see fit. There is little accountability for 504s.

With a IEP, it is a Federally mandated plan and there is high accountability.

The way you qualify is as follows " does the child's problem prevent them from

progressing in the general education curriculum " ? This can be anything from

socially, behavioral issues, medical issues that may cause her to tire more

easily.....to have difficulty keeping up with assignements because of

illness......she would qualify under " other medical " . This way, the school

would be strongly held to the standards that are set in the planning meetings

and, should they cause issues, you are able to file formal complain and due

process to force compliance.

504s are ok to make simple accomodations, but if her illnesses are hindering her

ability to keep up or stay focused, an IEP would be a much better option.

Terri

Mom and both daughters with CID

>

> conferences last night....

>

> " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

>

>

> Thanks, man. so helpful. I'll get right on that.

>

>

> (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

>

>

> valarie

> mom to 3 w/cvid

>

[Guest guest]

Yes,we had a two hour meeting today with special services....we are going to

retest for learning disabilities and autism spectrum disorders, processing

problems...she wad tested in third grade but now we have more problems so we are

testing again. She is struggling a lot now in high school.....and I have been

fighting with the school all year....they are not following federal law but I

amgojbg to make them!

> >

> > conferences last night....

> >

> > " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

> >

> >

> > Thanks, man. so helpful. I'll get right on that.

> >

> >

> > (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

> >

> >

> > valarie

> > mom to 3 w/cvid

> >

>

[Guest guest]

, most states have non-profit educational advocacy groups that can help

parents through the process. Many of them have attorney's on staff that can

help if you are having difficult getting the school to comply or to agree to

IEPs. Schools can make the process very difficult. As a parent, you have your

hands full coping with the day to day needs of a child with PIDD....let alone 3.

Trying to advocate for your children in the education system can add a lot more

burden and frustration. If you can find someone to help you; someone who knows

the ins and outs of what your daughter is entitled to, it can make it much

easier and lessen your load.

You might make some calls and see what is out there. One place to check would

be to call you local children's cancer support foundation.....like

candlelighters. They are accustomed to knowing the education challenges

children with cancer face (similar to what PIDD kids live with). They would

know if there was such an advocacy group in your area.

Best of luck!

Terri

mom and both daughters with CID

> > >

> > > conferences last night....

> > >

> > > " so as you can see here, what's pulling Savannah's grades down are these

repeated absences. She needs to be in school more. She makes up her work, but is

confused about the lessons missed. What you need to do is figure out some way

for her to be in class more often. She needs to quit getting sick so much. Make

her...I dont know. Just get things so she isnt so sick all the time. "

> > >

> > >

> > > Thanks, man. so helpful. I'll get right on that.

> > >

> > >

> > > (there is a 504 in place, but its lame. I have an appt with the special

services director today to work on more accomodations....Ive only been trying to

get ahold of her since September.....)

> > >

> > >

> > > valarie

> > > mom to 3 w/cvid

> > >

> >

>

[Guest guest]

OMG seriously??????!!!! Just make her stop being so sick?? If only we could

right???? wowza I am flabbergasted to say the least.....Sorry you gave to deal

with that kind of thinking Kenzie is in 6Th grade and up until now,

thankfully they have been wonderful, but Makenzie hasn't struggled yet so if

that day comes...that may change things ugh!! Fight for your girl, you are a

great Mom )

Makenzie 11

22

[Guest guest]

Lorri....it does my heart GOOD to see your post....nursing is Savannah's plan,

too...Im happy to see CVID isn't changing the course of your daughters dreams.

Yes, we are working on accomodations in the 504....something else I put in

there...many of her teachers noted that much of her " missed assignments " aka

flat out zero's in the gradebooks were due to movies and readings she misses

when out sick/appts/IVIG....well, she can't do the work or tests based on movies

or readings she missed, can she? so either they need to give an alternate

assignment, give her the movie or reading to do herself, or give her exempt

status.

Its aggravating but Im pushing them and I will see this thing through.

thanks.

valarie

mom to 3 w/cvid

>

> I had in my daughters 504 plan that the teacher would provide the missed

> work to the counselor within 24 hours of requested or it would not be my

> daughter responsabiity to do the assignment and would receive full credit.

> Most of the work is busy work and my daughter is very bright and I didn't

> care if she did the missed work or not! Just a thought. I found the 504

> plan worked great you just need to get the wording the way you want it to!

> Make it work for you!!!

>

> Lorri Kraft ( CVID, now 22 going to college to be a nurse! One year

> to go for graduation

>

> Re: I had to bite my tongue so hard....

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> OMG seriously??????!!!! Just make her stop being so sick?? If only we

> could right???? wowza I am flabbergasted to say the least.....Sorry you gave

> to deal with that kind of thinking Kenzie is in 6Th grade and up

> until now, thankfully they have been wonderful, but Makenzie hasn't

> struggled yet so if that day comes...that may change things ugh!! Fight for

> your girl, you are a great Mom )

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> Makenzie 11

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