Angry

May 25, 2010

I am so sorry, Diane, , and everyone who deals with ill children and

the various crazy repercussions, such as relationships with family members

and schools. I am another " in Virginia. " I can attest that Virginia

schools are not very sensitive to chronic illness, or thinking outside the

box. It was easier when my daughter was in middle school, with a 504 and

homebound instruction (not easy, by any means- difficult to find a homebound

instructor who was qualified and sympathetic, without being intrusive). My

daughter had high hopes of attending high school this past fall, but, I

received frequent- and legitimate- calls from the school nurse. (I was a

teacher in the same school system, and was generally treated with respect

and taken seriously, I must say....)

Mid-Oct., I resigned from my teaching job and pulled my daughter out of

public school. We've been doing a hodge-podge of homeschooling ever since.

I made sure that the state standards were covered. Sometime in March, she

was finished with most of her core subjects, and had passed the online

practice state standard tests (previously released SOL tests). So, I called

the school system to try to brainstorm a way to let her take the " real "

state standard tests in May (which are required for high school credit). I

explained that it was difficult to predict when she would be fully

recovered, but she had made progress, and we wanted to keep the door open

for public school. Although, legally, we can enroll my daughter in public

school at any time, she would not be allowed to take the SOL tests unless

she had sat in the class(es) for the bulk of the school year.

So, some states, such as VA, make it extremely difficult for chronically ill

students to attain the necessary classes and credits to graduate. (In our

district, even if she had stayed in h.s. and had homebound instruction, it

would not include any electives- such as foreign language, which was

required for the type of diploma she was capable of working towards, as well

as art, etc., nor required subjects, such as gym....So, she would have been

in her 20's by the time she might have graduated!).

If my daughter were to enroll in a public h.s. in our district in the fall,

or at anytime, she would be required to take " validation tests " in any

subject that she was homeschooled in, which are teacher-made/county tests

specific to their courses. In addition, for verified credit, in VA, she

would be required to make up the state SOL tests in those subjects, and pass

them. There would be tons of pressure on her to test well on those days,

for so much would be at stake.

I read up on our state's policies, and found no loop holes. Because

homeschooling is the best thing for my daughter at this time, the door is

pretty much closed for her returning to public school, should we want her to

graduate anywhere near her age group.

We have not had the horrible experiences that the other and others

have had with school systems. I feel fortunate for the " decent " middle

school homebound experience that my daughter had. And, I feel fortunate

that my husband and I have been able to cobble together a plan to help best

care for and educate our daughter. But, VA's policies are so very rigid and

restrictive (I am not very familiar with other states' policies). Changes

do need to be made.

~Well wishes to all~

On Tue, May 25, 2010 at 6:24 AM, Diane Biel <dkbmama@...> wrote:

>

> I am wondering why because lyme is what most doctors will call Chronic

> Fatigue Syndrome - and the school will listen to that why not have both

> diagnosed by the doctor so we do not have to fight this on top of the

> other?

> I am in a terrible spot right now - my 15 year olds father (who doesn't

> understand) doesn't believe in Chronic Lyme disease - (even though his

> girlfriend is the one who figured this out) now they are against me because

> they hate me - but anyways they have gone into the school system and told

> them that my daughter isnt not sick and she doesn't have CLD...........even

> have made the doctor drop us as patients...........(life ending) but at this

> time because she misses soooooo much school the school feels they have no

> supporting doctor for her EIP (use to be 504) - she sees another doctor in

> the " system " that just recently diagnosed my 11 year old with Chronic

> Fatigue Syndrome two weeks ago - and now is going to see my 15 year old in a

> few weeks. I feel that everyone is out to get me............can they take

> my daughter away because she has missed so much school? She just seen a

> migraine specialist yesterday and this lady states that migraines will not

> make fatigue like Sam has and says migraines go along with IBS - IBS

> specialist states that IBS will not make this much fatigue..........the CFS

> specialist says headaches and IBS do go along with fatigue....it just all

> makes me sick - they act like I am lying about my child being ill - and her

> father pushing that I just let her stay home.....even though he has only has

> about 1-5% placement with her in his life!! Why do we have to stress about

> sick kids and then stress about school - I would give my life up in a

> heartbeat if my child could live a " normal " life............why is this

> world so sick!!!!!

> I sent the special Ed person in charge of my daughters case an email - and

> she sent it to the school nurse and my child's pediatrician behind my

> back..........nothing in it was bad but when we visited the doctor yesterday

> she said to me oh I got your letter - I was like what letter? And then she

> stated what was in it and I told her that was an email I sent to school PE

> teacher..........

> Hate this - why would anyone " want " to be in this situation.............

> Diane

>

> ________________________________

> From: Farrell <lesliebfarrell@...<lesliebfarrell%40gmail.com>

> >

> < %40>

> Sent: Mon, May 24, 2010 9:17:18 PM

> Subject: Re: [ ] Angry

>

> ,

> I am from Virginia and we have elected school board members. We elect

> them.. If you can get to them then you have every right to have your say .

> Also if you can document that the school is treating the rest of your

> family

> wrong because of your advocating for one of your children then you really

> have a case. In my situation, my two girls are so close in age that

> everything that happens to one happens to the other. There is no

> discrimination. It is all bad. We too have all the support from tutors

> etc., but they can only go so far because it may effect their jobs, and I

> understand.

> What we really need to do is some type of media thing in all states at the

> same time that, affects how they do business. It has to undermine their

> plan. It has to cost them so that they have to take an action. I just have

> not figured out what that is. I think probably if we did not have ill

> children the inhuman situation we are in would probably drive us to act and

> we would have the energy to do something about it. I am constantly living

> on zero sleep and so much stress that I second guess everything I feel I

> need to do and it all becomes more of an issue.

> There has to be something we can do. Maybe we all need to contact ilads

> and see if they have a lawyer that wants to take on the United States

> Education Department. I would gladly pay a fee if I knew the person working

> for me understood exactly what was going on. Everyone so far we have hired

> will get us to a certain place, and then throw up their hands. Normal

> people, lawyers do not understand. There is still this box that every

> disabled person fits in that Lyme patients do not. They are disabled now,

> but they may not be and they may not have been before, and the schools do

> not have a box for us. They are use to working with students that will

> always be behind and they need to find a place for them, or they are use to

> students that become ill and will never get well. Although all of this is

> sad and to just think that these families are going through what we are is

> incomprehensible, but our kids are different. With treatment they will get

> better (at least we hope),and go on to lead productive lives and need their

> education to move on. We need to get them through this void they are in so

> they can heal.

> Is that horrible that I think this way?

>

> On Mon, May 24, 2010 at 1:25 PM,

<michellerwood@...<michellerwood%40windstream.net>>

> wrote:

>

> >

> > That was my husnband's first reaction but then we were worried about our

> > other 3 kids in the school system which is two of my brothers children.

> He

> > died of brain cancer in oct so I dont want them to suffer by anyone at

> the

> > school taking anything out on them.

> > We have so many teachers and staff we are friends with and they all wrote

> > letters on our behalf. Two of them were my son's tutor's who used to come

> to

> > our home so they know what kind of parents we are along with how sick our

> > kids truly are.

> > It's sad cause all it did was make things even harder on my son cause he

> > thinks its all his fault for being so sick. My husband and I are doing to

> > the school board once its all done to make sure it doesnt happen to

> anyone

> > else. I feel they need to know what she has done to our family cause know

> > I'm terrified to even think of putting them back in school for fear of

> the

> > end result if they miss any school.

> > --

> > R. Wood

> > michellerwood@... <michellerwood%40windstream.net><michellerwood%

> 40windstream.net>

> > Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you

> Human,

> > Failures keep you humble, Success keeps you glowing, but only GOD keeps

> you

> > Going!

> >

> > ---- Suzanne <suzlwilliams@...

<suzlwilliams%40><suzlwilliams%

> 40>>

> > wrote:

> > > I wonder if you counter charged that person for harassment if that

> > > would have made a difference in your case? Why can't people mind

> > > their own business?

> > >

> > > Suzanne

> > >

> > > On May 22, 2010, at 2:57 PM, spiritliftersonline wrote:

> > >

> > > > My heart and prayers go out to all of you who are dealing with

> > > > issues with your school system. Our school did not believe my 2

> > > > children have Lyme so when they were to sick to attend school we

> > > > decided to homeschool them both. My son had an IEP that they pushed

> > > > us to change to a 504 plan. Needless to say we are living every

> > > > parents worst nightmare. Once we pulled our kids and were approved

> > > > for homeschooling we received a notice in the mail that we were

> > > > being prosecuted by the State OF Ohio for contributing to the

> > > > deliquency of a minor and unruliness of a minor, a CRIMINAL sentence

> > > > which carries jail time. The school sent the case to the Attendance

> > > > Officer who then told us we had nothing to worry about, then he

> > > > turned it over to the juevinle court system. We knew where it all

> > > > came from ONE PERSON at the school that we had issues with because

> > > > she never has ever believed our kids were sick with LYME. This one

> > > > person pulled info. off the internet about Dr. J who is my kids Doc

> > > > and then tried to question us about if our kids really even had

> > > > Lyme. So now we are defending our self and had to hire a lawyer who

> > > > has told us this cost us up to $30,000 for the 2 day trial they have

> > > > set. So my advice is do not trust that your school has your kids

> > > > best interest in mind cause it normally is not the case. I have 3

> > > > other children who attend the same school yet they have no

> > > > attendance issues yet they think I just allowed my other 2 kids to

> > > > stay home for no reason. At 3 different time my son (13)was so sick

> > > > he couldnt even walk or stand on his own, to top if off had a Doc

> > > > excuse for everyday he missed. But that wasnt good enough for them.

> > > > I will pray for you all, I know God will see us all trough.

> > > > And I'm sure they were really happy to hear that my daughter's

> > > > western Blot was positive. NOT!! They look like a fool now but its

> > > > to late. The damage is already done. I had to leave my job making

> > > > $22 an hr to stay home with my kids cause they are so sick.

> > > > GOD BLESS YOU ALL

> > > >

> > > > > >

> > > > > > >

> > > > > > > ,

> > > > > > >

> > > > > > > Reading your post, it sounded like I could have written it

> > > > myself,

> > > > > > except

> > > > > > > we're in Loudoun Co. I get so angry at the blatant

> > > > discrimination

> > > > > > by the

> > > > > > > school! We've filed a complaint with the US Dept. Of

> > > > Education. We

> > > > > > know we

> > > > > > > can't make up for time lost, but at least if enough people

> > > > > > complain the

> > > > > > > schools might be forced to handle things differently.

> > > > > > >

> > > > > > > Lynn Nordseth

> > > > > > >

May 25, 2010

I think one of the biggest problems is that with Lyme's and Co-Inf.

treatments the herx's cause the patients to " get worse " before they

" get better " and the general public does not understand that. So your

child appears to them as tho he's diminishing before their eyes

because of the drugs that you and your doc are giving him. It looks

like abuse to them. I can sorta understand that due to their

ignorance. If we could explain to them how and why it happens and

show them the positive outcomes that some of us have had, maybe they

would be a little less apt to react so negatively to the treatment and

accusations of abuse. They think you are hurting your child instead

of helping him. I would use those words when I talked to them because

that is what they are thinking. There are Lymes brochures out there

to inform people of the existance and there are brochure to inform

doctors of the treatments but there are no informative materials to

explain to the school what happens to these children during treatment

from a medical point of view. I'm surprised Dr. J's office couldn't

explain that, although his office doesn't have time for ignorance and

he's been sued enough not to cover his ass by doing " something " for

these people to make them think he's listening to them so they don't

sue him again and make his case worse. And they don't listen to

parents, after all we are abusing our children in their eyes.

Suzanne

On May 25, 2010, at 5:24 AM, Diane Biel wrote:

> I am wondering why because lyme is what most doctors will call

> Chronic Fatigue Syndrome - and the school will listen to that why

> not have both diagnosed by the doctor so we do not have to fight

> this on top of the other?

> I am in a terrible spot right now - my 15 year olds father (who

> doesn't understand) doesn't believe in Chronic Lyme disease - (even

> though his girlfriend is the one who figured this out) now they are

> against me because they hate me - but anyways they have gone into

> the school system and told them that my daughter isnt not sick and

> she doesn't have CLD...........even have made the doctor drop us as

> patients...........(life ending) but at this time because she misses

> soooooo much school the school feels they have no supporting doctor

> for her EIP (use to be 504) - she sees another doctor in the

> " system " that just recently diagnosed my 11 year old with Chronic

> Fatigue Syndrome two weeks ago - and now is going to see my 15 year

> old in a few weeks. I feel that everyone is out to get

> me............can they take my daughter away because she has missed

> so much school? She just seen a migraine specialist yesterday and

> this lady states that migraines will not

> make fatigue like Sam has and says migraines go along with IBS - IBS

> specialist states that IBS will not make this much

> fatigue..........the CFS specialist says headaches and IBS do go

> along with fatigue....it just all makes me sick - they act like I am

> lying about my child being ill - and her father pushing that I just

> let her stay home.....even though he has only has about 1-5%

> placement with her in his life!! Why do we have to stress about

> sick kids and then stress about school - I would give my life up in

> a heartbeat if my child could live a " normal " life............why is

> this world so sick!!!!!

> I sent the special Ed person in charge of my daughters case an email

> - and she sent it to the school nurse and my child's pediatrician

> behind my back..........nothing in it was bad but when we visited

> the doctor yesterday she said to me oh I got your letter - I was

> like what letter? And then she stated what was in it and I told her

> that was an email I sent to school PE teacher..........

> Hate this - why would anyone " want " to be in this

> situation.............

> Diane

>

> ________________________________

> From: Farrell <lesliebfarrell@...>

>

> Sent: Mon, May 24, 2010 9:17:18 PM

> Subject: Re: [ ] Angry

>

> ,

> I am from Virginia and we have elected school board members. We elect

> them.. If you can get to them then you have every right to have your

> say .

> Also if you can document that the school is treating the rest of

> your family

> wrong because of your advocating for one of your children then you

> really

> have a case. In my situation, my two girls are so close in age that

> everything that happens to one happens to the other. There is no

> discrimination. It is all bad. We too have all the support from tutors

> etc., but they can only go so far because it may effect their jobs,

> and I

> understand.

> What we really need to do is some type of media thing in all states

> at the

> same time that, affects how they do business. It has to undermine

> their

> plan. It has to cost them so that they have to take an action. I

> just have

> not figured out what that is. I think probably if we did not have ill

> children the inhuman situation we are in would probably drive us to

> act and

> we would have the energy to do something about it. I am constantly

> living

> on zero sleep and so much stress that I second guess everything I

> feel I

> need to do and it all becomes more of an issue.

> There has to be something we can do. Maybe we all need to contact

> ilads

> and see if they have a lawyer that wants to take on the United States

> Education Department. I would gladly pay a fee if I knew the person

> working

> for me understood exactly what was going on. Everyone so far we have

> hired

> will get us to a certain place, and then throw up their hands. Normal

> people, lawyers do not understand. There is still this box that every

> disabled person fits in that Lyme patients do not. They are disabled

> now,

> but they may not be and they may not have been before, and the

> schools do

> not have a box for us. They are use to working with students that will

> always be behind and they need to find a place for them, or they are

> use to

> students that become ill and will never get well. Although all of

> this is

> sad and to just think that these families are going through what we

> are is

> incomprehensible, but our kids are different. With treatment they

> will get

> better (at least we hope),and go on to lead productive lives and

> need their

> education to move on. We need to get them through this void they are

> in so

> they can heal.

> Is that horrible that I think this way?

>

> On Mon, May 24, 2010 at 1:25 PM, <michellerwood@...> wrote:

>

> >

> > That was my husnband's first reaction but then we were worried

> about our

> > other 3 kids in the school system which is two of my brothers

> children. He

> > died of brain cancer in oct so I dont want them to suffer by

> anyone at the

> > school taking anything out on them.

> > We have so many teachers and staff we are friends with and they

> all wrote

> > letters on our behalf. Two of them were my son's tutor's who used

> to come to

> > our home so they know what kind of parents we are along with how

> sick our

> > kids truly are.

> > It's sad cause all it did was make things even harder on my son

> cause he

> > thinks its all his fault for being so sick. My husband and I are

> doing to

> > the school board once its all done to make sure it doesnt happen

> to anyone

> > else. I feel they need to know what she has done to our family

> cause know

> > I'm terrified to even think of putting them back in school for

> fear of the

> > end result if they miss any school.

> > --

> > R. Wood

> > michellerwood@... <michellerwood%40windstream.net>

> > Happiness keeps you sweet, Trials keep you strong, Sorrows Keep

> you Human,

> > Failures keep you humble, Success keeps you glowing, but only GOD

> keeps you

> > Going!

> >

> > ---- Suzanne <suzlwilliams@... <suzlwilliams

> %40>>

> > wrote:

> > > I wonder if you counter charged that person for harassment if that

> > > would have made a difference in your case? Why can't people mind

> > > their own business?

> > >

> > > Suzanne

> > >

> > > On May 22, 2010, at 2:57 PM, spiritliftersonline wrote:

> > >

> > > > My heart and prayers go out to all of you who are dealing with

> > > > issues with your school system. Our school did not believe my 2

> > > > children have Lyme so when they were to sick to attend school we

> > > > decided to homeschool them both. My son had an IEP that they

> pushed

> > > > us to change to a 504 plan. Needless to say we are living every

> > > > parents worst nightmare. Once we pulled our kids and were

> approved

> > > > for homeschooling we received a notice in the mail that we were

> > > > being prosecuted by the State OF Ohio for contributing to the

> > > > deliquency of a minor and unruliness of a minor, a CRIMINAL

> sentence

> > > > which carries jail time. The school sent the case to the

> Attendance

> > > > Officer who then told us we had nothing to worry about, then he

> > > > turned it over to the juevinle court system. We knew where it

> all

> > > > came from ONE PERSON at the school that we had issues with

> because

> > > > she never has ever believed our kids were sick with LYME. This

> one

> > > > person pulled info. off the internet about Dr. J who is my

> kids Doc

> > > > and then tried to question us about if our kids really even had

> > > > Lyme. So now we are defending our self and had to hire a

> lawyer who

> > > > has told us this cost us up to $30,000 for the 2 day trial

> they have

> > > > set. So my advice is do not trust that your school has your kids

> > > > best interest in mind cause it normally is not the case. I

> have 3

> > > > other children who attend the same school yet they have no

> > > > attendance issues yet they think I just allowed my other 2

> kids to

> > > > stay home for no reason. At 3 different time my son (13)was so

> sick

> > > > he couldnt even walk or stand on his own, to top if off had a

> Doc

> > > > excuse for everyday he missed. But that wasnt good enough for

> them.

> > > > I will pray for you all, I know God will see us all trough.

> > > > And I'm sure they were really happy to hear that my daughter's

> > > > western Blot was positive. NOT!! They look like a fool now but

> its

> > > > to late. The damage is already done. I had to leave my job

> making

> > > > $22 an hr to stay home with my kids cause they are so sick.

> > > > GOD BLESS YOU ALL

> > > >

> > > > > >

> > > > > > >

> > > > > > > ,

> > > > > > >

> > > > > > > Reading your post, it sounded like I could have written it

> > > > myself,

> > > > > > except

> > > > > > > we're in Loudoun Co. I get so angry at the blatant

> > > > discrimination

> > > > > > by the

> > > > > > > school! We've filed a complaint with the US Dept. Of

> > > > Education. We

> > > > > > know we

> > > > > > > can't make up for time lost, but at least if enough people

> > > > > > complain the

> > > > > > > schools might be forced to handle things differently.

> > > > > > >

> > > > > > > Lynn Nordseth

> > > > > > >

May 26, 2010

I feel bad for Dr. J as well, and I do understand his position. I'm not so much

angry with him . I'm just exhausted from the school. Whenever I request a

service and hire doctors to go in and speak, etc, they don't want to hear any of

it, but when they can't handle my son, I have to stop his treatment regimen to

satisfy their needs in hoping them to cope with him.

He has an IEP. In my opinion they should implement his strengths and weakness

into it and make up a new one.

Hugs

Judy

________________________________

From: S. Lederman <sm_lederman@...>

Lyme Treatment

Sent: Tue, May 25, 2010 7:27:29 AM

Subject: RE: [ ] Angry

i wouldn't blame dr. j. he is under enormous pressure himself and ultimtely it

is our fight. the school probably put him in a no choice position. we just left

dr. j. i feel very sad but did not have a choice with older daughter and younger

daughter wanted to go elsewhere. hugs

From: jchabot@...

Date: Mon, 24 May 2010 17:17:10 -0700

Subject: Re: [ ] Angry

I didn't think this was possible either, but Dr. J went along with the

school.I'm pretty angry over this myself!

Hugs

Judy

________________________________

From: CT <iamwhimsy@...>

Sent: Sun, May 23, 2010 9:08:25 PM

Subject: Re: [ ] Angry

No, the school does not have the power to decide what meds your child is on.

They do not have a medical degree, they can not override a dr.

When I and the dr requested homebound schooling for my daughter, the only

requirement by law that we had to provide was a letter from the dr stating the

dx, the prognosis and the estimated time frame. When the spec ed director for

the district (who I think has it out for me ) ) requested that I sign an

information release so that they could talk to the dr. I very specifically wrote

on the release that the dr could tell them the dx, the prognosis and the

estimated time frame for treatment. No other information could be discussed (I

didn't have to release any other info, so I wouldn't). Now that the spec ed

director knows that I am fully aware of the law and will not give them anything

other than what is specifically required by law, I haven't had any more issues

with her.

My daughter's caseworker is great and I've never had issues with her through all

this.

Most states limit what you have to release (if anything) to get an IEP, this is

in terms of medical dr, psych dr, therapist, etc. I don't have to allow them to

speak to my children's dr's at all, other than the basic info required for the

homebound instruction. For their IEP's, the doctors never have to be contacted.

It pays to know your state laws in addition to the federal law.

I have found it helpful to always have a binder with me that has a full

print-out of IDEA in it, along with all our state requirements. I have

highlighted the areas that are most pertinent to our situations and I take this

to any and all meetings with the school, along with my binder for the specific

child in question (that binder has current IEP, all school evals, pharmacy

printouts of all side effects for each med my child is on, recent report cards,

and a few other things that may be of importance in meetings).

In addition, rather than list all the meds my child is on for their emergency

card, I now type up a list, put it in a sealed envelope and mark it " to be

opened by First Responders only " . This way the information is there in case of

an emergency, but the school personnel can't see what meds my kids are on. I

discovered the hard way when I tried to be a good parent and gave the school a

list of all the meds, dosages, and schedule. My daughter was on a high dose of

vicodin and the district spec ed director called CPS.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] Angry

My heart and prayers go out to all of you who are dealing with issues with your

school system. Our school did not believe my 2 children have Lyme so when they

were to sick to attend school we decided to homeschool them both. My son had an

IEP that they pushed us to change to a 504 plan. Needless to say we are living

every parents worst nightmare. Once we pulled our kids and were approved for

homeschooling we received a notice in the mail that we were being prosecuted by

the State OF Ohio for contributing to the deliquency of a minor and unruliness

of a minor, a CRIMINAL sentence which carries jail time. The school sent the

case to the Attendance Officer who then told us we had nothing to worry about,

then he turned it over to the juevinle court system. We knew where it all came

from ONE PERSON at the school that we had issues with because she never has ever

believed our kids were sick with LYME. This one person pulled info. off the

internet about Dr. J

who is my kids Doc and then tried to question us about if our kids really even

had Lyme. So now we are defending our self and had to hire a lawyer who has told

us this cost us up to $30,000 for the 2 day trial they have set. So my advice is

do not trust that your school has your kids best interest in mind cause it

normally is not the case. I have 3 other children who attend the same school yet

they have no attendance issues yet they think I just allowed my other 2 kids to

stay home for no reason. At 3 different time my son (13)was so sick he couldnt

even walk or stand on his own, to top if off had a Doc excuse for everyday he

missed. But that wasnt good enough for them.

I will pray for you all, I know God will see us all trough.

And I'm sure they were really happy to hear that my daughter's western Blot was

positive. NOT!! They look like a fool now but its to late. The damage is already

done. I had to leave my job making $22 an hr to stay home with my kids cause

they are so sick.

GOD BLESS YOU ALL

> >

> > >

> > > ,

> > >

> > > Reading your post, it sounded like I could have written it myself,

> > except

> > > we're in Loudoun Co. I get so angry at the blatant discrimination

> > by the

> > > school! We've filed a complaint with the US Dept. Of Education. We

> > know we

> > > can't make up for time lost, but at least if enough people

> > complain the

> > > schools might be forced to handle things differently.

> > >

> > > Lynn Nordseth

> > >

May 26, 2010

Yes, we have both read Spoon Theory and we usually refer to it as using spoons,

or " you only have so many spoons " . I just figured most people didn't know about

spoons ~grinning~, so I used " energy points " .

It's frustrating living like this. Thankfully we don't have too much trouble

with her high school. It also helps that we live 25 minutes away from her

school (we drive to a district that is out of our home area, even before she was

dx'ed, simply because they are better schools than the one right around the

corner from us). My daughter got a job this year though, I had some

reservations, however, she needs to have a normal life. Rather than going to

her school for the work permit, we went to our local district and had no problem

getting the permit. Her caseworker is aware that she applied for the job and

that she got it, and has agreed that it is best for her and she is keeping the

info to herself and not telling the people at school.

As her caseworker and I agreed, going to work for 4 - 6 hours a couple of times

a week, is not the same as 7 hours a day at school and then doing homework on

top of that. My daughter even informed the business owners when she was

interviewed that she had Lyme. They interviewed her twice, the second time was

just about the Lyme (did both during the same interview time, which was like a 2

hour audition and interview and involved 25 applicants).

Anyway, I wasn't totally thrilled about her applying for a job, knowing how much

it could take out of her, and knowing that employers aren't going to be

forgiving if she has to call in sick several days during the summer. However, I

had to step back and at least let her try.

We'll see how she does, so far she's only had 1 day of training for 4 hours,

that was 1 1/2 weeks ago. They said she would only get a few shifts before

school got out, so at least she isn't trying to do her schoolwork (homebound

studies) and lots of hours at work also.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] Angry

>

> My heart and prayers go out to all of you who are dealing with issues with

> your school system. Our school did not believe my 2 children have Lyme so

> when they were to sick to attend school we decided to homeschool them both.

> My son had an IEP that they pushed us to change to a 504 plan. Needless to

> say we are living every parents worst nightmare. Once we pulled our kids and

> were approved for homeschooling we received a notice in the mail that we

> were being prosecuted by the State OF Ohio for contributing to the

> deliquency of a minor and unruliness of a minor, a CRIMINAL sentence which

> carries jail time. The school sent the case to the Attendance Officer who

> then told us we had nothing to worry about, then he turned it over to the

> juevinle court system. We knew where it all came from ONE PERSON at the

> school that we had issues with because she never has ever believed our kids

> were sick with LYME. This one person pulled info. off the internet about Dr.

> J

> who is my kids Doc and then tried to question us about if our kids really

> even had Lyme. So now we are defending our self and had to hire a lawyer who

> has told us this cost us up to $30,000 for the 2 day trial they have set. So

> my advice is do not trust that your school has your kids best interest in

> mind cause it normally is not the case. I have 3 other children who attend

> the same school yet they have no attendance issues yet they think I just

> allowed my other 2 kids to stay home for no reason. At 3 different time my

> son (13)was so sick he couldnt even walk or stand on his own, to top if off

> had a Doc excuse for everyday he missed. But that wasnt good enough for

> them.

> I will pray for you all, I know God will see us all trough.

> And I'm sure they were really happy to hear that my daughter's western Blot

> was positive. NOT!! They look like a fool now but its to late. The damage is

> already done. I had to leave my job making $22 an hr to stay home with my

> kids cause they are so sick.

> GOD BLESS YOU ALL

>

> > >

> > > >

> > > > ,

> > > >

> > > > Reading your post, it sounded like I could have written it myself,

> > > except

> > > > we're in Loudoun Co. I get so angry at the blatant discrimination

> > > by the

> > > > school! We've filed a complaint with the US Dept. Of Education. We

> > > know we

> > > > can't make up for time lost, but at least if enough people

> > > complain the

> > > > schools might be forced to handle things differently.

> > > >

> > > > Lynn Nordseth

> > > >

May 26, 2010

If he has an IEP, that IEP is legally enforceable. Check the paperwork

carefully and ensure that it is being followed correctly according to what is

written on the IEP.

You can request a meeting at anytime to review his IEP and make changes to it as

the needs of your child change. Be careful though about giving up anything that

is currently on an IEP, you may need that accomodation again, and once it's

gone, it's hard to get back.

We just did my son's transition IEP from middle school to high school. I'm not

overly thrilled with his middle school caseworker (and his HS caseworker knows

that). MS caseworker, HS caseworker, social worker, speech therapist, my son

and myself were in the meeting. I refused to drop anything that he has on his

current IEP even though he won't need it next year (such as weekly emails from

each teacher to me letting me know what assignments are missing for the week, so

that we can get them caught up on Friday and over the weekend. Next year, his

caseworker will take care of all that and I will pretty much interface with her

for all issues, not each individual teacher). My reasoning, since it was only

April, I didn't want to lose any accomodations for the rest of the year, just

because he won't be using them next year. The HS caseworker and I already know

that we will be meeting in the first week of school, to " correct " his

accomodations in the IEP for his freshman year. At that time I will make

appropriate adjustments, though I know there will be some accomodations that he

doesn't even currently use, that I won't give up because it's possible he will

want or need them again.

All IEP's are supposed to have strengths and weakness shown, it's part of PLAAFP

(Present Levels of Academis Achievement and Functional Performance). And then,

based on the PLAAFP, there should be annual goals with a coupel of short-term

objectives for each goal. There should also be listed what criteria will be to

judge whether the goal is met or not, how it will be evaluated (standarized

testing, observation, students daily work, etc) and the schedule for evaluation

(daily, monthly, grading period, etc).

Charlotte

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] Angry

My heart and prayers go out to all of you who are dealing with issues with

your school system. Our school did not believe my 2 children have Lyme so when

they were to sick to attend school we decided to homeschool them both. My son

had an IEP that they pushed us to change to a 504 plan. Needless to say we are

living every parents worst nightmare. Once we pulled our kids and were approved

for homeschooling we received a notice in the mail that we were being prosecuted

by the State OF Ohio for contributing to the deliquency of a minor and

unruliness of a minor, a CRIMINAL sentence which carries jail time. The school

sent the case to the Attendance Officer who then told us we had nothing to worry

about, then he turned it over to the juevinle court system. We knew where it all

came from ONE PERSON at the school that we had issues with because she never has

ever believed our kids were sick with LYME. This one person pulled info. off the