Re: angry

August 11, 2003

i am soo glad you found that - i have two boys, ages 6 and 2. Both my kids

have walked on their toes and I have questioned the drs but have never been

given any explaination. However, the 2 year old was just diagnosed with apraxia

- is that different from dyspraxia? i wish the " professionals " would take the

time to read up on some of this stuff so when we as parents ask questions -

we are given facts instead of nothing at all!!!

August 11, 2003

I have an 11 year old niece who always toe walked and on occasion still does.

When i think back at her earlier development, she was a classic out of sink

child, talked late but did develop normal speech, hopeless at athletics, could

not kick a stationary ball at all. just the other day my sister who never

had her tested for delays or anything else, just fessed up to me saying I think

has some sort of learning disability, i noticed how she learns things,

her math skills are poor but with one on one instruction she gets it, she takes

Irish step dancing lessons and i might add she is on her way to world

championship competition next year. my sister said she sees how she even learns

the

timing of the steps compared to the other children, it is all one sided for

hours, she gets it down pat, then she transfers it to her other side. the other

students do right and left learning at the same time, cannot if she tries

she is like she has two left feet very uncoordinated, but her own way of

learning she has become a very good dancer, go figure?

August 11, 2003

Jane,

What is the article? Can you e-mail a link to the article? I'd like to read it

too. Thanks, KIM

[ ] angry

Just have to let of steam! AGAIN. Just read a article about " toe walking " . For

those who know this has been found to be an early indicator of dsypraxia ect.Why

am i angry? Well because for 2 years i questioned why my child did this. I made

appiontments with everyone,even had her checked and fitted for flat feet ! Why

was this not picked up on.If i have found this onfo after being on the net for

approx 3months why not people who do this for a living. Maybe you are thinking i

expect to much, i dont think so. I think the only difference is that i CARE.

Jane,UK.

August 12, 2003

Hi

Your niece is a fine example of determination & resilience - she must have

known all her life she was a bit off-centre. You must be so very proud of

her.

That's quite inspiring how she works round her co-ordination issues with

the end result being high competition standard - thanks for sharing.

Gin

Re: [ ] angry

> I have an 11 year old niece who always toe walked and on occasion still

does.

> When i think back at her earlier development, she was a classic out of

sink

> child, talked late but did develop normal speech, hopeless at athletics,

could

> not kick a stationary ball at all. just the other day my sister who never

> had her tested for delays or anything else, just fessed up to me saying I

think

> has some sort of learning disability, i noticed how she learns

things,

> her math skills are poor but with one on one instruction she gets it, she

takes

> Irish step dancing lessons and i might add she is on her way to world

> championship competition next year. my sister said she sees how she even

learns the

> timing of the steps compared to the other children, it is all one sided

for

> hours, she gets it down pat, then she transfers it to her other side. the

other

> students do right and left learning at the same time, cannot if she

tries

> she is like she has two left feet very uncoordinated, but her own way of

> learning she has become a very good dancer, go figure?

>

August 12, 2003

Hi

apraxia in the USA

dyspraxia in the UK .

Jane , you really seem to have lucked out with the people you were

referred to. The first time i saw a paed about charlies regression i

was asked about his speech and was asked did he toe walk......I can't

think how many times i was asked about that through the diagnostic

process but it was reffered to several times...........

Regards

Deborah

> i am soo glad you found that - i have two boys, ages 6 and 2. Both

my kids

> have walked on their toes and I have questioned the drs but have

never been

> given any explaination. However, the 2 year old was just diagnosed

with apraxia

> - is that different from dyspraxia? i wish the " professionals "

would take the

> time to read up on some of this stuff so when we as parents ask

questions -

> we are given facts instead of nothing at all!!!

>

August 12, 2003

That child is a lesson for all of us....sometimes their " differences " aren't as

obvious (I believe my daughter is one of these), but still visible to someone

who KNOWS. I always knew she had visual spatial difficulties, but I'm now

realizing her " heavy on her feet " way, is probably hypotonia, to an extent.

Glad she has done so well....she's obviously a very bright little girl to figure

out what to do, so she makes sure she " gets it " ....God Bless

~K

Re: [ ] angry

> I have an 11 year old niece who always toe walked and on occasion still

does.

> When i think back at her earlier development, she was a classic out of

sink

> child, talked late but did develop normal speech, hopeless at athletics,

could

> not kick a stationary ball at all. just the other day my sister who never

> had her tested for delays or anything else, just fessed up to me saying I

think

> has some sort of learning disability, i noticed how she learns

things,

> her math skills are poor but with one on one instruction she gets it, she

takes

> Irish step dancing lessons and i might add she is on her way to world

> championship competition next year. my sister said she sees how she even

learns the

> timing of the steps compared to the other children, it is all one sided

for

> hours, she gets it down pat, then she transfers it to her other side. the

other

> students do right and left learning at the same time, cannot if she

tries

> she is like she has two left feet very uncoordinated, but her own way of

> learning she has become a very good dancer, go figure?

May 22, 2010

Every state has laws regarding homebound schooling and there is federal law as

well.

If you wish to send me the state you are in, I will look up the info on the laws

for you and assist however I'm able. I've helped with advocating for several

friends who live out-of-state from me.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] Angry

Suzanne,

Are you saying to make a petition to the U.S. Department of Education (maybe

Special Education)?

It really amazes me that in my school district they leave it up to the

individual schools to decide what to do. They act like we are the only ones

with this problem, they ignore the letters from the doctors, and they can

not understand how it effects the child. I know that some of the kids in our

district are getting help, even we got help at one point, but then in our

school the administrators took over and everything that worked was pulled.

If I was able to get to the teachers first they would work with the tutors,

but if the school found out they would demand more. Now unfortunately it is

almost like they convince the teachers to not work with us, or pick teachers

that they can control. The biggest complaint I have had is that they will

not let the tutors teach. The tutors (who are teachers in this district),

are required to have the girls do whatever the assigned teacher sends them.

It would make so much more sense to have the teachers send the curriculum,

test and quizzes, and let the tutors teach whatever way works for the girls

to pass the assessments, have them take the assessments and let that be the

grades. All the busy work is just delaying what the girls need to learn.

The tutors are not allowed to teach, there is not enough time, they are only

couriers. Plus in our situation the school has delayed many times by not

giving us tutors.

There should be a designated program that is set up for these ill students

that allows them to learn what is needed and move on. There should not be

deadlines and as long as they pass the tests and show progression they can

move on. I have an 18 year old that has attempted 10th grade three times and

she still does not have grades for first quarter. She should be graduating

today and it is the school that has delayed everything. My advocating has

just made them dig their heals in harder.

It really is a shame that these are the people that should be mentoring our

kids and instead are robbing them of their education. I could go on and on

about how we have asked for help and instead have been told we are already

getting it. I have email after email that just shows how vague and

unresponsive the help has been, but I can not get anyone to listen to me.

Like they say, You don't get it until you get it. This is so true and

unfortunately I believe they will get it one day and it breaks my heart that

many more will suffer until that happens. My girls truly want to be able to

learn and get ahead, but they have been treated like they have done

something wrong and are home doing nothing and should be held accountable

for all the work.

Most of our tutors have been great, but even they feel like they have no

voice when it comes to advocating for my girls. That's a real shame in

itself. They do not even trust their own teachers.

On Sat, May 22, 2010 at 3:15 PM, Suzanne

<suzlwilliams@...>wrote:

> If you can make a petition we can all sign it and back you including

> all the Lyme Docs.

> Suzanne

>

> On May 21, 2010, at 10:03 PM, Farrell wrote:

>

> > Lynn,

> > I am sorry you are going through this as well. Is there an easy way

> > to make

> > a complaint. I complained to a guy at VDOE and he was really nice

> > but what

> > needs to happen is either mediation or due process. He sent me all

> > these

> > brochures and to do either takes lots of paperwork and does not

> > sound at all

> > like they will do anything. I have always thought that if I hit it

> > where

> > they hurt (Special Ed funding), it would make more of an impression.

> > Here

> > in Fairfax it is like a Good ole' Boys network and everybody just

> > agrees

> > with what the schools decide. I have talked or left messages with

> > everyone

> > and it has gone no where. My husband wants me to go on 7 on your

> > side, (the

> > news station). I have decided I would rather die before I sit in

> > another

> > IEP meeting, and I have two teens going through this. It makes me

> > sick to

> > think that these are the people that are in charge of most of the

> > kids, most

> > of the time. I do not trust them at all.

> > Thanks for responding,

> >

> > On Fri, May 21, 2010 at 7:10 AM, Rusty N <rnordseth@...> wrote:

> >

> > >

> > > ,

> > >

> > > 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 23, 2010

Maybe we would be heard at the Federal Level if the Lyme Disease

Associations could help us. I guarantee the govt. will ignore you

until you scream load enough to make them look bad. I don't know if

this would help you but I have a friend that's little boy had a

reading disability that the school had " missed " or misdiagnosed and it

put him 2 grade levels behind. They were not getting him the proper

help because the school he went to didn't have a special tutor that

was certified for his disability. SO, long story short.... She had

him diagnosed by a MD and that MD wrote up what he needed in detail to

be able to learn properly and the type of special education he

needed. With that she could demand the school give her that

particular treatment or else the doctor said she would come to the

school and demand it herself ( which the school doesn't like, cuz they

would lose that fight. ) And just like the insurance company.... If

they refuse tell them to write it down and sign it that " they are

refusing the recommended education prescribed by the child's MD. "

They will NOT do that because you can then sue them when your child

fails. Try going to your State's Educational Board with their

refusal. Principals and school boards get in trouble for those kinds

of complaints so it's easier for them to accommodate you to keep you

quiet. You would think anyway. Good luck. You might just have to

homeschool them to teach them the way you want. They would probably

learn more that way anyway.

Suzanne

On May 22, 2010, at 6:28 PM, Farrell wrote:

> Charlotte,

> Thank you. I think I have the current law and it clearly says that the

> tutors can modify and grade the curriculum. My school says that yes

> the

> tutors can teach anyway they want but they still have to have the

> student

> complete the paperwork that the teachers of record require. Some of

> it has

> been modified by the teachers, but they still are requiring allot

> that is

> not necessary to get the children through. I have argued this until

> I was

> blue and they always seem to go around the law. I have gone up to the

> Assistant superintendent of my area and they just put me back in

> touch with

> the same people that have been unsupported in the past. We have IEP

> but it

> is clear that they do not understand the Individual of the I in IEP.

> I want

> my girls to learn, and unfortunately because of their brain fog and

> short

> term memories it has been a struggle, but if they would let the

> tutors teach

> to the assessments then it would work. What are the alternatives?

> Dropping

> out or getting their GED, that is not the schools teaching them. The

> sad

> part is that I know my girls already had a good basis on their

> education.

> We had them in private schools up until 9th grade and they were not

> only

> good students, but athlete's as well. Too bad they still can not play

> sports, because I know for a fact if they were helping the school

> athletically, we would be getting anything we asked for.

> One of our tutors is the teacher of record as well and she has been

> able to

> modify the curriculum and it is working great. As a matter of fact my

> daughter is getting almost the best grade in her class on all the

> assessments and she is still doing projects, but just not as much.

> This

> tutor has told me that in her 12th grade classes there are a few

> students

> that really can not read but the school has past them on because of

> sports.

> How sad is that. To deprive my ill children a chance to get ahead and

> maybe hold on to some of their self esteem, the schools are instead

> making

> it so difficult that they are just hoping we go away. This is after

> we had

> to spend over $20,000.00 and hire a lawyer just to get them to agree

> to

> test for the IEP which we finally received. We have also had to endure

> having to go to court for truancy when the school denied homebound,

> and the

> school called Child Protective Services on us for truancy when we

> had the

> tutors that were coming to our house. It has truly been a nightmare

> that we

> can not get out of.

>

> On Sat, May 22, 2010 at 4:47 PM, CT <iamwhimsy@...> wrote:

>

> >

> > Every state has laws regarding homebound schooling and there is

> federal law

> > as well.

> >

> > If you wish to send me the state you are in, I will look up the

> info on the

> > laws for you and assist however I'm able. I've helped with

> advocating for

> > several friends who live out-of-state from me.

> >

> > Charlotte

> > iamwhimsy@... <iamwhimsy%40gmail.com>

> > http://whimsy.t35.com

> >

> > Re: [ ] Angry

> >

> > Suzanne,

> > Are you saying to make a petition to the U.S. Department of

> Education

> > (maybe

> > Special Education)?

> > It really amazes me that in my school district they leave it up to

> the

> > individual schools to decide what to do. They act like we are the

> only ones

> > with this problem, they ignore the letters from the doctors, and

> they can

> > not understand how it effects the child. I know that some of the

> kids in

> > our

> > district are getting help, even we got help at one point, but then

> in our

> > school the administrators took over and everything that worked was

> pulled.

> > If I was able to get to the teachers first they would work with

> the tutors,

> > but if the school found out they would demand more. Now

> unfortunately it is

> > almost like they convince the teachers to not work with us, or pick

> > teachers

> > that they can control. The biggest complaint I have had is that

> they will

> > not let the tutors teach. The tutors (who are teachers in this

> district),

> > are required to have the girls do whatever the assigned teacher

> sends them.

> > It would make so much more sense to have the teachers send the

> curriculum,

> > test and quizzes, and let the tutors teach whatever way works for

> the girls

> > to pass the assessments, have them take the assessments and let

> that be the

> > grades. All the busy work is just delaying what the girls need to

> learn.

> > The tutors are not allowed to teach, there is not enough time,

> they are

> > only

> > couriers. Plus in our situation the school has delayed many times

> by not

> > giving us tutors.

> >

> > There should be a designated program that is set up for these ill

> students

> > that allows them to learn what is needed and move on. There should

> not be

> > deadlines and as long as they pass the tests and show progression

> they can

> > move on. I have an 18 year old that has attempted 10th grade three

> times

> > and

> > she still does not have grades for first quarter. She should be

> graduating

> > today and it is the school that has delayed everything. My

> advocating has

> > just made them dig their heals in harder.

> > It really is a shame that these are the people that should be

> mentoring our

> > kids and instead are robbing them of their education. I could go

> on and on

> > about how we have asked for help and instead have been told we are

> already

> > getting it. I have email after email that just shows how vague and

> > unresponsive the help has been, but I can not get anyone to listen

> to me.

> >

> > Like they say, You don't get it until you get it. This is so true

> and

> > unfortunately I believe they will get it one day and it breaks my

> heart

> > that

> > many more will suffer until that happens. My girls truly want to

> be able to

> > learn and get ahead, but they have been treated like they have done

> > something wrong and are home doing nothing and should be held

> accountable

> > for all the work.

> >

> > Most of our tutors have been great, but even they feel like they

> have no

> > voice when it comes to advocating for my girls. That's a real

> shame in

> > itself. They do not even trust their own teachers.

> >

> > On Sat, May 22, 2010 at 3:15 PM, Suzanne <suzlwilliams@...

> <suzlwilliams%40>

> > >wrote:

> >

> > > If you can make a petition we can all sign it and back you

> including

> > > all the Lyme Docs.

> > > Suzanne

> > >

> > > On May 21, 2010, at 10:03 PM, Farrell wrote:

> > >

> > > > Lynn,

> > > > I am sorry you are going through this as well. Is there an

> easy way

> > > > to make

> > > > a complaint. I complained to a guy at VDOE and he was really

> nice

> > > > but what

> > > > needs to happen is either mediation or due process. He sent me

> all

> > > > these

> > > > brochures and to do either takes lots of paperwork and does not

> > > > sound at all

> > > > like they will do anything. I have always thought that if I

> hit it

> > > > where

> > > > they hurt (Special Ed funding), it would make more of an

> impression.

> > > > Here

> > > > in Fairfax it is like a Good ole' Boys network and everybody

> just

> > > > agrees

> > > > with what the schools decide. I have talked or left messages

> with

> > > > everyone

> > > > and it has gone no where. My husband wants me to go on 7 on your

> > > > side, (the

> > > > news station). I have decided I would rather die before I sit in

> > > > another

> > > > IEP meeting, and I have two teens going through this. It makes

> me

> > > > sick to

> > > > think that these are the people that are in charge of most of

> the

> > > > kids, most

> > > > of the time. I do not trust them at all.

> > > > Thanks for responding,

> > > >

> > > > On Fri, May 21, 2010 at 7:10 AM, Rusty N

> <rnordseth@...<rnordseth%40>>

> > wrote:

> > > >

> > > > >

> > > > > ,

> > > > >

> > > > > 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 23, 2010

Charlotte,

Are you familiar w/ the law in RI?

:)Laina

> >

> > >

> > > ,

> > >

> > > 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 24, 2010

I have been having issues with the school as well. They called a meeting and

asked me how my son was doing at home, than they proceeded to tell me my son is

acting as though he has severe cognitive dulling. They told me he is " out of it "

in class and they asked me to tell them all the medications he was on and which

ones were new, etc, etc.They had me sign a release form so they could speak to

Dr. J.

That same day I got a call from Dr. J's office saying to stop my son's flagyl.

They said the school faxed over a copy of his school work from how it was at the

beginning of the year and how much it has deteriorated.( they also told me they

would call and tell the school seeing he has an IEP they needed to get him an

aide or tutor.

We knew this would happen with the flagyl and we were told by Dr. J it would,

and that it meant it was working.I told the school this.

SO justÂ because the school doesn't want to deal with my son, they made him come

off the meds is what I'm assuming has happened.Â This apparantly was why Dr. J

had ordered an MRI for my son( which came out normal)

Now what? the school has the power over what meds your child is on?????

Hugs'

JudyÂ

________________________________

From: spiritliftersonline <michellerwood@...>

Sent: Sat, May 22, 2010 3:57:48 PM

Subject: Re: [ ] Angry

Â

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 24, 2010

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