Re: Feel like I am going crazy!

[Guest guest]

IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

What you can do (though there may not be time now), is to get an advocate to go

with you to the IEP meeting (of course you can postpone the IEP for another week

or so if you talk to an advocate and can get one to go with you with a weeks

notice).

An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

Good luck, the fight isn't easy, but it's so worth it.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

[ ] Feel like I am going crazy!

Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit from small classes of a private school, or he

could need language and reading resources a private school does not have. I am

reluctant to get a full eval with her, as I think she would just label him with

ADHD too. She says an ADHD label could work in our favor to get accomodations;

the lyme literate neuropsych tells me not to have him labeled that. It is all so

layered and complicated, I don't know what to fight for or what school setting

is best for him anymore. My head is spinning and I don't feel like there is

anyone qualified to tell us really what is going on with him and to advise us.

Because we think this is congenital, I have no baseline to go on.

DOES anyone know of a lyme literate speech pathologist?

Thanks,

Dara

[Guest guest]

Hi Dara,

I agree with Charlotte. I have been fighting with the school district for my son

for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS, etc,

What I did was I took the OCD,ADHD and Tourettes label, because my son has lyme

and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I used

that to get him the IEP. It has been a huge constant fight.They do not recognize

chronic lyme , nor do they recognize the PANDAS in my son's case because they

are still " controversial "

I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

I hope this helps some

Hugs

Judy

________________________________

From: CT <iamwhimsy@...>

Sent: Mon, May 3, 2010 3:29:00 PM

Subject: Re: [ ] Feel like I am going crazy!

 

IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

What you can do (though there may not be time now), is to get an advocate to go

with you to the IEP meeting (of course you can postpone the IEP for another week

or so if you talk to an advocate and can get one to go with you with a weeks

notice).

An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

Good luck, the fight isn't easy, but it's so worth it.

Charlotte

iamwhimsygmail (DOT) com

http://whimsy. t35.com

[ ] Feel like I am going crazy!

Some of you might remember I have written before about our struggle with school

for my 7yo with lyme disease. We got neuropsych testing with a lyme literate

neuropsych which came up with lot of cognitive deficits, language issues,

sensory and attention issues, and was interpreted and explained in the context

of lyme disease. The school insisted on their own testing; I got the reports

back last week and the dreaded IEP mtg to discuss is tomorrow. All that is on

the neuropsych report has been discredited (no surprise), by the school either

saying they got different results, or the cog deficits that did come up were

attriuted to attention issues and a label of ADHD was splapped on. They say he

has no language issues. I called a private language pathologist today who spoke

to me at length, and it is clear that she would not be able to interpret the

symptoms in context of Lyme. Problems with reading could be language, could be

attentional. He could benefit

from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

DOES anyone know of a lyme literate speech pathologist?

Thanks,

Dara

[Guest guest]

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ________________________________

> From: CT <iamwhimsy@...>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

Good luck at your meeting tom, This can be soo hard :(Peace,laina

From: darabeth2003 <dara.alewine@...>

Subject: Re: [ ] Feel like I am going crazy!

Date: Monday, May 3, 2010, 9:39 PM

 

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: CT <iamwhimsy@. ..>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

Dara -

The only thing you are required to sign is the attendance sheet. You have 30

days to sign any IEP. So ask for a copy, take your time and read it.

Feel free to email me privately or if you wish, email me for my phone number

(I'm in Michigan).

I've been through quite a few IEP's and not just for Lyme.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

[ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and

reading resources a private school does not have. I am reluctant to get a full

eval with her, as I think she would just label him with ADHD too. She says an

ADHD label could work in our favor to get accomodations; the lyme literate

neuropsych tells me not to have him labeled that. It is all so layered and

complicated, I don't know what to fight for or what school setting is best for

him anymore. My head is spinning and I don't feel like there is anyone qualified

to tell us really what is going on with him and to advise us. Because we think

this is congenital, I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

one thing that worked for me was to have a doctor's report that included ADHD

and Auditory processing disorder diagnoses -- we explained that the ADHD and APD

were probably caused by the Lyme (and gave a whole informational article about

the range of symptoms Lyme can cause).

It is not up to the school to believe in Lyme or not.  If your doctor has

diagnosed it and has a report or other letter specifically stating that it

manifests in these symptoms in your son, the school district cannot legally

second guess.  I think.

Good luck and keep us posted.  Ideally it should not be an adversarial event

but it can be.  Oh, also, when we went in for my daughters, I let the crazy

district nurse ramble on for a while and then I asked very politely " I am a

little confused.  Are you telling me that you believe my child should not miss

more than two days of school because of her Lyme and coinfections?  Can you

tell me your authority for that, because our doctor has written a note asking

that my daughter be excused to be home-school and tutored for this entire

semester.  I'm not clear on the district's authority to second-guess or

contradict the doctor's diagnosis, assessment and recommendation. "   She ranted

for a while but the upshot is that she knew I knew our rights and ultimately we

got the IEP we needed for both girls.  It helped that I had written up the

entire proposed IEP list of symptoms and accommodations, and then didn't as k

for all of them. 

Anyway, good luck.

From: darabeth2003 <dara.alewine@ verizon.net>

Subject: Re: [ ] Feel like I am going crazy!

Date: Monday, May 3, 2010, 9:39 PM

 

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: CT <iamwhimsy@. ..>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

The school system shouldn't be allowed to NOT recognize an illness!

Especially with a letter from an MD! They are a school, not the CDC.

As if the family doesn't have enough to worry about. Ridiculous!

Suzanne

On May 3, 2010, at 7:22 PM, jchabot wrote:

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school

> district for my son for 4 years now.He was labeled with ADHD, OCD,

> Bipolar, Tourettes, PDD NOS, etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my

> son has lyme and PANDAS, which can cause all the symptoms of ocd,

> ADHD, etc, etc, and I used that to get him the IEP. It has been a

> huge constant fight.They do not recognize chronic lyme , nor do they

> recognize the PANDAS in my son's case because they are still

> " controversial "

>

> I have had to prove to them, that by law, they have to recognize my

> son's strengths and weaknessess and plan an appropriate program

> based on that.

>

> I hope this helps some

> Hugs

> Judy

>

> ________________________________

> From: CT <iamwhimsy@...>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>

> IEP's are need driven, not dx driven (by law). The trick is to get a

> dx that will allow for the services that are needed. It's possible

> that accepting the label of ADHD and getting an IEP under that

> label, will give you the services that your child needs.

>

> What you can do (though there may not be time now), is to get an

> advocate to go with you to the IEP meeting (of course you can

> postpone the IEP for another week or so if you talk to an advocate

> and can get one to go with you with a weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where

> the school has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle

> with school for my 7yo with lyme disease. We got neuropsych testing

> with a lyme literate neuropsych which came up with lot of cognitive

> deficits, language issues, sensory and attention issues, and was

> interpreted and explained in the context of lyme disease. The school

> insisted on their own testing; I got the reports back last week and

> the dreaded IEP mtg to discuss is tomorrow. All that is on the

> neuropsych report has been discredited (no surprise), by the school

> either saying they got different results, or the cog deficits that

> did come up were attriuted to attention issues and a label of ADHD

> was splapped on. They say he has no language issues. I called a

> private language pathologist today who spoke to me at length, and it

> is clear that she would not be able to interpret the symptoms in

> context of Lyme. Problems with reading could be language, could be

> attentional. He could benefit

> from small classes of a private school, or he could need language

> and reading resources a private school does not have. I am reluctant

> to get a full eval with her, as I think she would just label him

> with ADHD too. She says an ADHD label could work in our favor to get

> accomodations; the lyme literate neuropsych tells me not to have him

> labeled that. It is all so layered and complicated, I don't know

> what to fight for or what school setting is best for him anymore. My

> head is spinning and I don't feel like there is anyone qualified to

> tell us really what is going on with him and to advise us. Because

> we think this is congenital, I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

Hi Dara,

You are not alone. I have yet another meeting Thursday morning myself. The

teacher is writting me notes everyday saying my son cannot do the work all of a

sudden. That he is declining tremendously, academically and behaviorally. I

explained at my last PPT my son was going on yet another antibiotic and that it

was going to cause this. Now that they are having issues, they keep calling

meetings.

Unfortunately, It's a long ongoing fight for you child. I have spent over 6,000

so far in advocates and attorneys to get my son in a private school and I have

wasted my money. I guess it will have to get to the point it's at now, where

they can't do anything with him.

Homeschooling is not an option for me. I have to work and have two other kids.

Just wanted to share!

Please let us know how it goes!

I will be thinking of you!!

Hugs

Judy

________________________________

From: darabeth2003 <dara.alewine@...>

Sent: Mon, May 3, 2010 9:39:06 PM

Subject: Re: [ ] Feel like I am going crazy!

 

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: CT <iamwhimsy@. ..>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

I gave a copy of Under our Skin to the school nurse and she invited the

principle and all the 7th grade teachers to watch it after school. I am going to

go too... so that I can see who actually attends. I feel that it is really

important for these teachers to get a clue ( I can say this b/c I am a teacher

too) about what their students are dealing with especially in RI where we are

4th in the nation for lyme. They need to be more compassionate and

understanding.

From: jchabot <jchabot@...>

Subject: Re: [ ] Feel like I am going crazy!

Date: Tuesday, May 4, 2010, 8:37 PM

 

Hi Dara,

You are not alone. I have yet another meeting Thursday morning myself. The

teacher is writting me notes everyday saying my son cannot do the work all of a

sudden. That he is declining tremendously, academically and behaviorally. I

explained at my last PPT my son was going on yet another antibiotic and that it

was going to cause this. Now that they are having issues, they keep calling

meetings.

Unfortunately, It's a long ongoing fight for you child. I have spent over 6,000

so far in advocates and attorneys to get my son in a private school and I have

wasted my money. I guess it will have to get to the point it's at now, where

they can't do anything with him.

Homeschooling is not an option for me. I have to work and have two other kids.

Just wanted to share!

Please let us know how it goes!

I will be thinking of you!!

Hugs

Judy

____________ _________ _________ __

From: darabeth2003 <dara.alewine@ verizon.net>

Sent: Mon, May 3, 2010 9:39:06 PM

Subject: Re: [ ] Feel like I am going crazy!

 

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: CT <iamwhimsy@. ..>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

I offered a copy and a couple of teachers watched -- not sure of others thought

hey kept it a long time.  Then the school nurse and the attendance lady asked

to watch it and they DID!  And then my daughters' psychiatrist took the time to

watch it  -- he has been an amazing advocate and support through all of this --

open minded but asking thoughtful questions along the way.  Totally accepts

Lyme and the neuropsych stuff and really works with the girls not just about

daily stuff of being a tween and chronically ill but also about the specific

symptoms that they struggle with.

From: jchabot <jchabotsnet (DOT) net>

Subject: Re: [ ] Feel like I am going crazy!

Date: Tuesday, May 4, 2010, 8:37 PM

 

Hi Dara,

You are not alone. I have yet another meeting Thursday morning myself. The

teacher is writting me notes everyday saying my son cannot do the work all of a

sudden. That he is declining tremendously, academically and behaviorally. I

explained at my last PPT my son was going on yet another antibiotic and that it

was going to cause this. Now that they are having issues, they keep calling

meetings.

Unfortunately, It's a long ongoing fight for you child. I have spent over 6,000

so far in advocates and attorneys to get my son in a private school and I have

wasted my money. I guess it will have to get to the point it's at now, where

they can't do anything with him.

Homeschooling is not an option for me. I have to work and have two other kids.

Just wanted to share!

Please let us know how it goes!

I will be thinking of you!!

Hugs

Judy

____________ _________ _________ __

From: darabeth2003 <dara.alewine@ verizon.net>

Sent: Mon, May 3, 2010 9:39:06 PM

Subject: Re: [ ] Feel like I am going crazy!

 

Thank you Judy and Charlotte,

It is all so frustrating- not only the fight with the school, but my own

helplessness in the complexity of what lyme disease causes and not knowing what

the best environment is to help him. Then there is my son saying " I don't need

any more testing- there is nothing wrong with me! " that makes it all the harder.

My stomach is in knots about this meeting tomorrow. I did put a call into an

advocate today. At this point, I have to go through with the mtg tomorrow, but

won't sign anything, and will have to ask for another mtg with the advocate.

Dara

>

> Hi Dara,

> I agree with Charlotte. I have been fighting with the school district for my

son for 4 years now.He was labeled with ADHD, OCD, Bipolar, Tourettes, PDD NOS,

etc,

>

> What I did was I took the OCD,ADHD and Tourettes label, because my son has

lyme and PANDAS, which can cause all the symptoms of ocd, ADHD, etc, etc, and I

used that to get him the IEP. It has been a huge constant fight.They do not

recognize chronic lyme , nor do they recognize the PANDAS in my son's case

because they are still " controversial "

>

> I have had to prove to them, that by law, they have to recognize my son's

strengths and weaknessess and plan an appropriate program based on that.

>

> I hope this helps some

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: CT <iamwhimsy@. ..>

>

> Sent: Mon, May 3, 2010 3:29:00 PM

> Subject: Re: [ ] Feel like I am going crazy!

>

>  

> IEP's are need driven, not dx driven (by law). The trick is to get a dx that

will allow for the services that are needed. It's possible that accepting the

label of ADHD and getting an IEP under that label, will give you the services

that your child needs.

>

> What you can do (though there may not be time now), is to get an advocate to

go with you to the IEP meeting (of course you can postpone the IEP for another

week or so if you talk to an advocate and can get one to go with you with a

weeks notice).

>

> An advocate is always a good resource to have in IEP meeting where the school

has a record of being difficult.

>

> Good luck, the fight isn't easy, but it's so worth it.

>

> Charlotte

> iamwhimsygmail (DOT) com

> http://whimsy. t35.com

> [ ] Feel like I am going crazy!

>

> Some of you might remember I have written before about our struggle with

school for my 7yo with lyme disease. We got neuropsych testing with a lyme

literate neuropsych which came up with lot of cognitive deficits, language

issues, sensory and attention issues, and was interpreted and explained in the

context of lyme disease. The school insisted on their own testing; I got the

reports back last week and the dreaded IEP mtg to discuss is tomorrow. All that

is on the neuropsych report has been discredited (no surprise), by the school

either saying they got different results, or the cog deficits that did come up

were attriuted to attention issues and a label of ADHD was splapped on. They say

he has no language issues. I called a private language pathologist today who

spoke to me at length, and it is clear that she would not be able to interpret

the symptoms in context of Lyme. Problems with reading could be language, could

be attentional. He could benefit

> from small classes of a private school, or he could need language and reading

resources a private school does not have. I am reluctant to get a full eval with

her, as I think she would just label him with ADHD too. She says an ADHD label

could work in our favor to get accomodations; the lyme literate neuropsych tells

me not to have him labeled that. It is all so layered and complicated, I don't

know what to fight for or what school setting is best for him anymore. My head

is spinning and I don't feel like there is anyone qualified to tell us really

what is going on with him and to advise us. Because we think this is congenital,

I have no baseline to go on.

> DOES anyone know of a lyme literate speech pathologist?

>

> Thanks,

> Dara

>

>

[Guest guest]

That is such a great idea! If every one of us recruited watchers like

that more people would be informed and compassionate. Then the

schools would have to " accept " it as a disease.

Suzanne

Sent from my iPhone

On May 5, 2010, at 8:50 AM, Natasha Moiseyev <nmoiseyev@...>

wrote:

> I offered a copy and a couple of teachers watched -- not sure of

> others thought hey kept it a long time. Then the school nurse and

> the attendance lady asked to watch it and they DID! And then my

> daughters' psychiatrist took the time to watch it -- he has been an

> amazing advocate and support through all of this -- open minded but

> asking thoughtful questions along the way. Totally accepts Lyme and

> the neuropsych stuff and really works with the girls not just about

> daily stuff of being a tween and chronically ill but also about the

> specific symptoms that they struggle with.

>

>

>

> From: jchabot <jchabotsnet (DOT) net>

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Date: Tuesday, May 4, 2010, 8:37 PM

>

>

>

> Hi Dara,

>

> You are not alone. I have yet another meeting Thursday morning

> myself. The teacher is writting me notes everyday saying my son

> cannot do the work all of a sudden. That he is declining

> tremendously, academically and behaviorally. I explained at my last

> PPT my son was going on yet another antibiotic and that it was going

> to cause this. Now that they are having issues, they keep calling

> meetings.

>

> Unfortunately, It's a long ongoing fight for you child. I have spent

> over 6,000 so far in advocates and attorneys to get my son in a

> private school and I have wasted my money. I guess it will have to

> get to the point it's at now, where they can't do anything with him.

>

> Homeschooling is not an option for me. I have to work and have two

> other kids.

>

> Just wanted to share!

>

> Please let us know how it goes!

>

> I will be thinking of you!!

>

> Hugs

>

> Judy

>

> ____________ _________ _________ __

>

> From: darabeth2003 <dara.alewine@ verizon.net>

>

>

>

> Sent: Mon, May 3, 2010 9:39:06 PM

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Thank you Judy and Charlotte,

>

> It is all so frustrating- not only the fight with the school, but my

> own helplessness in the complexity of what lyme disease causes and

> not knowing what the best environment is to help him. Then there is

> my son saying " I don't need any more testing- there is nothing

> wrong with me! " that makes it all the harder.

>

> My stomach is in knots about this meeting tomorrow. I did put a call

> into an advocate today. At this point, I have to go through with the

> mtg tomorrow, but won't sign anything, and will have to ask for

> another mtg with the advocate.

>

> Dara

>

>

>

> >

>

> > Hi Dara,

>

> > I agree with Charlotte. I have been fighting with the school

> district for my son for 4 years now.He was labeled with ADHD, OCD,

> Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > What I did was I took the OCD,ADHD and Tourettes label, because my

> son has lyme and PANDAS, which can cause all the symptoms of ocd,

> ADHD, etc, etc, and I used that to get him the IEP. It has been a

> huge constant fight.They do not recognize chronic lyme , nor do they

> recognize the PANDAS in my son's case because they are still

> " controversial "

>

> >

>

> > I have had to prove to them, that by law, they have to recognize

> my son's strengths and weaknessess and plan an appropriate program

> based on that.

>

> >

>

> > I hope this helps some

>

> > Hugs

>

> > Judy

>

> >

>

> >

>

> >

>

> >

>

> > ____________ _________ _________ __

>

> > From: CT <iamwhimsy@. ..>

>

> >

>

> > Sent: Mon, May 3, 2010 3:29:00 PM

>

> > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > Â

>

> > IEP's are need driven, not dx driven (by law). The trick is to get

> a dx that will allow for the services that are needed. It's possible

> that accepting the label of ADHD and getting an IEP under that

> label, will give you the services that your child needs.

>

> >

>

> > What you can do (though there may not be time now), is to get an

> advocate to go with you to the IEP meeting (of course you can

> postpone the IEP for another week or so if you talk to an advocate

> and can get one to go with you with a weeks notice).

>

> >

>

> > An advocate is always a good resource to have in IEP meeting where

> the school has a record of being difficult.

>

> >

>

> > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > Charlotte

>

> > iamwhimsygmail (DOT) com

>

> > http://whimsy. t35.com

>

> > [ ] Feel like I am going crazy!

>

> >

>

> > Some of you might remember I have written before about our

> struggle with school for my 7yo with lyme disease. We got neuropsych

> testing with a lyme literate neuropsych which came up with lot of

> cognitive deficits, language issues, sensory and attention issues,

> and was interpreted and explained in the context of lyme disease.

> The school insisted on their own testing; I got the reports back

> last week and the dreaded IEP mtg to discuss is tomorrow. All that

> is on the neuropsych report has been discredited (no surprise), by

> the school either saying they got different results, or the cog

> deficits that did come up were attriuted to attention issues and a

> label of ADHD was splapped on. They say he has no language issues. I

> called a private language pathologist today who spoke to me at

> length, and it is clear that she would not be able to interpret the

> symptoms in context of Lyme. Problems with reading could be

> language, could be attentional. He could benefit

>

> > from small classes of a private school, or he could need language

> and reading resources a private school does not have. I am reluctant

> to get a full eval with her, as I think she would just label him

> with ADHD too. She says an ADHD label could work in our favor to get

> accomodations; the lyme literate neuropsych tells me not to have him

> labeled that. It is all so layered and complicated, I don't know

> what to fight for or what school setting is best for him anymore. My

> head is spinning and I don't feel like there is anyone qualified to

> tell us really what is going on with him and to advise us. Because

> we think this is congenital, I have no baseline to go on.

>

> > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > Thanks,

>

> > Dara

>

> >

>

> >

[Guest guest]

I have about 5 copies that I loan out to people all the time.  Actually, Under

Our Skin is offering a 2-for-1 sale on the DVDs this month for Lyme Awareness

Month.  I think they give you stickers and bracelets too.

I believe that all we can do is offer the information one person at a time. 

Some people completely embrace it and support, others, there is no convincing. 

I don't try to convince.  I just am very open about what we are dealing with. 

Many people just glaze over -- one family actually had a kid who had Lyme in her

knee and was completely cured in 3-6 months of abx conventionally given, and

they think we are being dramatic and absurd with our treatment (day 3 here on

PICC for older daughter -- pain in arm and minimal body pain -- should be back

in school tomorrow first time since Feb -- if ONLY it were all about me being a

hysterical mom, wife, patient.)   I do not have the time or energy to waste on

those who simply will not believe or understand.  All I can do is offer our

epxerience to those willing to listen and support -- and I have gotten AMAZING

support!

Anyway, yes, I offer the movie and people who watch it are quite shocked to find

out what we deal with physically as well as politically.

Hang in there everybody and keep fingers crossed for Sasha on Rocephin and Maya

who is on last chance orals before trying IV, and who has neuropsych symptoms to

the tenth power this week.

Natasha

>

> From: jchabot <jchabotsnet (DOT) net>

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Date: Tuesday, May 4, 2010, 8:37 PM

>

>

>

> Hi Dara,

>

> You are not alone. I have yet another meeting Thursday morning

> myself. The teacher is writting me notes everyday saying my son

> cannot do the work all of a sudden. That he is declining

> tremendously, academically and behaviorally. I explained at my last

> PPT my son was going on yet another antibiotic and that it was going

> to cause this. Now that they are having issues, they keep calling

> meetings.

>

> Unfortunately, It's a long ongoing fight for you child. I have spent

> over 6,000 so far in advocates and attorneys to get my son in a

> private school and I have wasted my money. I guess it will have to

> get to the point it's at now, where they can't do anything with him.

>

> Homeschooling is not an option for me. I have to work and have two

> other kids.

>

> Just wanted to share!

>

> Please let us know how it goes!

>

> I will be thinking of you!!

>

> Hugs

>

> Judy

>

> ____________ _________ _________ __

>

> From: darabeth2003 <dara.alewine@ verizon.net>

>

>

>

> Sent: Mon, May 3, 2010 9:39:06 PM

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Thank you Judy and Charlotte,

>

> It is all so frustrating- not only the fight with the school, but my

> own helplessness in the complexity of what lyme disease causes and

> not knowing what the best environment is to help him. Then there is

> my son saying " I don't need any more testing- there is nothing

> wrong with me! " that makes it all the harder.

>

> My stomach is in knots about this meeting tomorrow. I did put a call

> into an advocate today. At this point, I have to go through with the

> mtg tomorrow, but won't sign anything, and will have to ask for

> another mtg with the advocate.

>

> Dara

>

>

>

> >

>

> > Hi Dara,

>

> > I agree with Charlotte. I have been fighting with the school

> district for my son for 4 years now.He was labeled with ADHD, OCD,

> Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > What I did was I took the OCD,ADHD and Tourettes label, because my

> son has lyme and PANDAS, which can cause all the symptoms of ocd,

> ADHD, etc, etc, and I used that to get him the IEP. It has been a

> huge constant fight.They do not recognize chronic lyme , nor do they

> recognize the PANDAS in my son's case because they are still

> " controversial "

>

> >

>

> > I have had to prove to them, that by law, they have to recognize

> my son's strengths and weaknessess and plan an appropriate program

> based on that.

>

> >

>

> > I hope this helps some

>

> > Hugs

>

> > Judy

>

> >

>

> >

>

> >

>

> >

>

> > ____________ _________ _________ __

>

> > From: CT <iamwhimsy@. ..>

>

> >

>

> > Sent: Mon, May 3, 2010 3:29:00 PM

>

> > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > Â

>

> > IEP's are need driven, not dx driven (by law). The trick is to get

> a dx that will allow for the services that are needed. It's possible

> that accepting the label of ADHD and getting an IEP under that

> label, will give you the services that your child needs.

>

> >

>

> > What you can do (though there may not be time now), is to get an

> advocate to go with you to the IEP meeting (of course you can

> postpone the IEP for another week or so if you talk to an advocate

> and can get one to go with you with a weeks notice).

>

> >

>

> > An advocate is always a good resource to have in IEP meeting where

> the school has a record of being difficult.

>

> >

>

> > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > Charlotte

>

> > iamwhimsygmail (DOT) com

>

> > http://whimsy. t35.com

>

> > [ ] Feel like I am going crazy!

>

> >

>

> > Some of you might remember I have written before about our

> struggle with school for my 7yo with lyme disease. We got neuropsych

> testing with a lyme literate neuropsych which came up with lot of

> cognitive deficits, language issues, sensory and attention issues,

> and was interpreted and explained in the context of lyme disease.

> The school insisted on their own testing; I got the reports back

> last week and the dreaded IEP mtg to discuss is tomorrow. All that

> is on the neuropsych report has been discredited (no surprise), by

> the school either saying they got different results, or the cog

> deficits that did come up were attriuted to attention issues and a

> label of ADHD was splapped on. They say he has no language issues. I

> called a private language pathologist today who spoke to me at

> length, and it is clear that she would not be able to interpret the

> symptoms in context of Lyme. Problems with reading could be

> language, could be attentional. He could benefit

>

> > from small classes of a private school, or he could need language

> and reading resources a private school does not have. I am reluctant

> to get a full eval with her, as I think she would just label him

> with ADHD too. She says an ADHD label could work in our favor to get

> accomodations; the lyme literate neuropsych tells me not to have him

> labeled that. It is all so layered and complicated, I don't know

> what to fight for or what school setting is best for him anymore. My

> head is spinning and I don't feel like there is anyone qualified to

> tell us really what is going on with him and to advise us. Because

> we think this is congenital, I have no baseline to go on.

>

> > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > Thanks,

>

> > Dara

>

> >

>

> >

[Guest guest]

lots of love and blessingspeace,laina

>

> From: jchabot <jchabotsnet (DOT) net>

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Date: Tuesday, May 4, 2010, 8:37 PM

>

>

>

> Hi Dara,

>

> You are not alone. I have yet another meeting Thursday morning

> myself. The teacher is writting me notes everyday saying my son

> cannot do the work all of a sudden. That he is declining

> tremendously, academically and behaviorally. I explained at my last

> PPT my son was going on yet another antibiotic and that it was going

> to cause this. Now that they are having issues, they keep calling

> meetings.

>

> Unfortunately, It's a long ongoing fight for you child. I have spent

> over 6,000 so far in advocates and attorneys to get my son in a

> private school and I have wasted my money. I guess it will have to

> get to the point it's at now, where they can't do anything with him.

>

> Homeschooling is not an option for me. I have to work and have two

> other kids.

>

> Just wanted to share!

>

> Please let us know how it goes!

>

> I will be thinking of you!!

>

> Hugs

>

> Judy

>

> ____________ _________ _________ __

>

> From: darabeth2003 <dara.alewine@ verizon.net>

>

>

>

> Sent: Mon, May 3, 2010 9:39:06 PM

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Thank you Judy and Charlotte,

>

> It is all so frustrating- not only the fight with the school, but my

> own helplessness in the complexity of what lyme disease causes and

> not knowing what the best environment is to help him. Then there is

> my son saying " I don't need any more testing- there is nothing

> wrong with me! " that makes it all the harder.

>

> My stomach is in knots about this meeting tomorrow. I did put a call

> into an advocate today. At this point, I have to go through with the

> mtg tomorrow, but won't sign anything, and will have to ask for

> another mtg with the advocate.

>

> Dara

>

>

>

> >

>

> > Hi Dara,

>

> > I agree with Charlotte. I have been fighting with the school

> district for my son for 4 years now.He was labeled with ADHD, OCD,

> Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > What I did was I took the OCD,ADHD and Tourettes label, because my

> son has lyme and PANDAS, which can cause all the symptoms of ocd,

> ADHD, etc, etc, and I used that to get him the IEP. It has been a

> huge constant fight.They do not recognize chronic lyme , nor do they

> recognize the PANDAS in my son's case because they are still

> " controversial "

>

> >

>

> > I have had to prove to them, that by law, they have to recognize

> my son's strengths and weaknessess and plan an appropriate program

> based on that.

>

> >

>

> > I hope this helps some

>

> > Hugs

>

> > Judy

>

> >

>

> >

>

> >

>

> >

>

> > ____________ _________ _________ __

>

> > From: CT <iamwhimsy@. ..>

>

> >

>

> > Sent: Mon, May 3, 2010 3:29:00 PM

>

> > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > Â

>

> > IEP's are need driven, not dx driven (by law). The trick is to get

> a dx that will allow for the services that are needed. It's possible

> that accepting the label of ADHD and getting an IEP under that

> label, will give you the services that your child needs.

>

> >

>

> > What you can do (though there may not be time now), is to get an

> advocate to go with you to the IEP meeting (of course you can

> postpone the IEP for another week or so if you talk to an advocate

> and can get one to go with you with a weeks notice).

>

> >

>

> > An advocate is always a good resource to have in IEP meeting where

> the school has a record of being difficult.

>

> >

>

> > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > Charlotte

>

> > iamwhimsygmail (DOT) com

>

> > http://whimsy. t35.com

>

> > [ ] Feel like I am going crazy!

>

> >

>

> > Some of you might remember I have written before about our

> struggle with school for my 7yo with lyme disease. We got neuropsych

> testing with a lyme literate neuropsych which came up with lot of

> cognitive deficits, language issues, sensory and attention issues,

> and was interpreted and explained in the context of lyme disease.

> The school insisted on their own testing; I got the reports back

> last week and the dreaded IEP mtg to discuss is tomorrow. All that

> is on the neuropsych report has been discredited (no surprise), by

> the school either saying they got different results, or the cog

> deficits that did come up were attriuted to attention issues and a

> label of ADHD was splapped on. They say he has no language issues. I

> called a private language pathologist today who spoke to me at

> length, and it is clear that she would not be able to interpret the

> symptoms in context of Lyme. Problems with reading could be

> language, could be attentional. He could benefit

>

> > from small classes of a private school, or he could need language

> and reading resources a private school does not have. I am reluctant

> to get a full eval with her, as I think she would just label him

> with ADHD too. She says an ADHD label could work in our favor to get

> accomodations; the lyme literate neuropsych tells me not to have him

> labeled that. It is all so layered and complicated, I don't know

> what to fight for or what school setting is best for him anymore. My

> head is spinning and I don't feel like there is anyone qualified to

> tell us really what is going on with him and to advise us. Because

> we think this is congenital, I have no baseline to go on.

>

> > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > Thanks,

>

> > Dara

>

> >

>

> >

[Guest guest]

I have not seen this yet, but I did hear about it, and am going to purchase it.

Would you happen to know what it costs? I think this would be great for my son's

school as well.

Hugs

Judy

________________________________

From: laina pedro <Lainamariepedro@...>

Sent: Wed, May 5, 2010 3:59:50 PM

Subject: Re: [ ] Feel like I am going crazy!

 

lots of love and blessingspeace, laina

>

> From: jchabot <jchabotsnet (DOT) net>

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Date: Tuesday, May 4, 2010, 8:37 PM

>

>

>

> Hi Dara,

>

> You are not alone. I have yet another meeting Thursday morning

> myself. The teacher is writting me notes everyday saying my son

> cannot do the work all of a sudden. That he is declining

> tremendously, academically and behaviorally. I explained at my last

> PPT my son was going on yet another antibiotic and that it was going

> to cause this. Now that they are having issues, they keep calling

> meetings.

>

> Unfortunately, It's a long ongoing fight for you child. I have spent

> over 6,000 so far in advocates and attorneys to get my son in a

> private school and I have wasted my money. I guess it will have to

> get to the point it's at now, where they can't do anything with him.

>

> Homeschooling is not an option for me. I have to work and have two

> other kids.

>

> Just wanted to share!

>

> Please let us know how it goes!

>

> I will be thinking of you!!

>

> Hugs

>

> Judy

>

> ____________ _________ _________ __

>

> From: darabeth2003 <dara.alewine@ verizon.net>

>

>

>

> Sent: Mon, May 3, 2010 9:39:06 PM

>

> Subject: Re: [ ] Feel like I am going crazy!

>

>

>

> Thank you Judy and Charlotte,

>

> It is all so frustrating- not only the fight with the school, but my

> own helplessness in the complexity of what lyme disease causes and

> not knowing what the best environment is to help him. Then there is

> my son saying " I don't need any more testing- there is nothing

> wrong with me! " that makes it all the harder.

>

> My stomach is in knots about this meeting tomorrow. I did put a call

> into an advocate today. At this point, I have to go through with the

> mtg tomorrow, but won't sign anything, and will have to ask for

> another mtg with the advocate.

>

> Dara

>

>

>

> >

>

> > Hi Dara,

>

> > I agree with Charlotte. I have been fighting with the school

> district for my son for 4 years now.He was labeled with ADHD, OCD,

> Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > What I did was I took the OCD,ADHD and Tourettes label, because my

> son has lyme and PANDAS, which can cause all the symptoms of ocd,

> ADHD, etc, etc, and I used that to get him the IEP. It has been a

> huge constant fight.They do not recognize chronic lyme , nor do they

> recognize the PANDAS in my son's case because they are still

> " controversial "

>

> >

>

> > I have had to prove to them, that by law, they have to recognize

> my son's strengths and weaknessess and plan an appropriate program

> based on that.

>

> >

>

> > I hope this helps some

>

> > Hugs

>

> > Judy

>

> >

>

> >

>

> >

>

> >

>

> > ____________ _________ _________ __

>

> > From: CT <iamwhimsy@. ..>

>

> >

>

> > Sent: Mon, May 3, 2010 3:29:00 PM

>

> > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > Â

>

> > IEP's are need driven, not dx driven (by law). The trick is to get

> a dx that will allow for the services that are needed. It's possible

> that accepting the label of ADHD and getting an IEP under that

> label, will give you the services that your child needs.

>

> >

>

> > What you can do (though there may not be time now), is to get an

> advocate to go with you to the IEP meeting (of course you can

> postpone the IEP for another week or so if you talk to an advocate

> and can get one to go with you with a weeks notice).

>

> >

>

> > An advocate is always a good resource to have in IEP meeting where

> the school has a record of being difficult.

>

> >

>

> > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > Charlotte

>

> > iamwhimsygmail (DOT) com

>

> > http://whimsy. t35.com

>

> > [ ] Feel like I am going crazy!

>

> >

>

> > Some of you might remember I have written before about our

> struggle with school for my 7yo with lyme disease. We got neuropsych

> testing with a lyme literate neuropsych which came up with lot of

> cognitive deficits, language issues, sensory and attention issues,

> and was interpreted and explained in the context of lyme disease.

> The school insisted on their own testing; I got the reports back

> last week and the dreaded IEP mtg to discuss is tomorrow. All that

> is on the neuropsych report has been discredited (no surprise), by

> the school either saying they got different results, or the cog

> deficits that did come up were attriuted to attention issues and a

> label of ADHD was splapped on. They say he has no language issues. I

> called a private language pathologist today who spoke to me at

> length, and it is clear that she would not be able to interpret the

> symptoms in context of Lyme. Problems with reading could be

> language, could be attentional. He could benefit

>

> > from small classes of a private school, or he could need language

> and reading resources a private school does not have. I am reluctant

> to get a full eval with her, as I think she would just label him

> with ADHD too. She says an ADHD label could work in our favor to get

> accomodations; the lyme literate neuropsych tells me not to have him

> labeled that. It is all so layered and complicated, I don't know

> what to fight for or what school setting is best for him anymore. My

> head is spinning and I don't feel like there is anyone qualified to

> tell us really what is going on with him and to advise us. Because

> we think this is congenital, I have no baseline to go on.

>

> > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > Thanks,

>

> > Dara

>

> >

>

> >

[Guest guest]

I just ordered the 2 for 1 deal at underourskin.com because the copy we had was

borrowed. It was $34.95 for the 1 copy, and a second will be sent free. There

was also $6 shipping, so a total of $40.95.

Reasonable in my mind for 2 dvd's, especially considering the importance of the

message and how beneficial it may be to have others watch it.

Charlotte

iamwhimsy@...

http://whimsy.t35.com

Re: [ ] Feel like I am going crazy!

I have not seen this yet, but I did hear about it, and am going to purchase

it.

Would you happen to know what it costs? I think this would be great for my

son's school as well.

Hugs

Judy

[Guest guest]

Thought I would let you know how the mtg went. The outcome was as I predicted-

not good or helpful- but I was pretty satisfied with my performance. I am now in

touch with an advocate if we decide to go forward with the process. (Still

considering pulling him out of the school)

The kicker was this though- in talking about what the school ID's as my son's

lack of confidence- which I think is anxiety- the teacher told me that I was

making his issues bigger than they actually are, and by doing all of the testing

and " dragging him to Mass or whereever " , I am causing him to think something is

wrong with him and affecting his self esteem. She was actually referring to

taking him to CT to see Dr. J. I reminded her of Jonah's medical condition for

which he receives treatment with an expert and most of the testing she is

referring to is testing the school has insisted on, not me. I wish I had really

laid into her,but was trying to keep my cool.

Talk about someone who truly discounts Lyme disease.

I could go on and on. . . It is hard to seperate my emotional response to this

teacher and IEP team when making a decision for my son about what the right

placement is for him.

Dara

>

> >

>

> > >

>

> >

>

> > > Hi Dara,

>

> >

>

> > > I agree with Charlotte. I have been fighting with the school

>

> > district for my son for 4 years now.He was labeled with ADHD, OCD,

>

> > Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > >

>

> >

>

> > > What I did was I took the OCD,ADHD and Tourettes label, because my

>

> > son has lyme and PANDAS, which can cause all the symptoms of ocd,

>

> > ADHD, etc, etc, and I used that to get him the IEP. It has been a

>

> > huge constant fight.They do not recognize chronic lyme , nor do they

>

> > recognize the PANDAS in my son's case because they are still

>

> > " controversial "

>

> >

>

> > >

>

> >

>

> > > I have had to prove to them, that by law, they have to recognize

>

> > my son's strengths and weaknessess and plan an appropriate program

>

> > based on that.

>

> >

>

> > >

>

> >

>

> > > I hope this helps some

>

> >

>

> > > Hugs

>

> >

>

> > > Judy

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > ____________ _________ _________ __

>

> >

>

> > > From: CT <iamwhimsy@ ..>

>

> >

>

> > >

>

> >

>

> > > Sent: Mon, May 3, 2010 3:29:00 PM

>

> >

>

> > > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Â

>

> >

>

> > > IEP's are need driven, not dx driven (by law). The trick is to get

>

> > a dx that will allow for the services that are needed. It's possible

>

> > that accepting the label of ADHD and getting an IEP under that

>

> > label, will give you the services that your child needs.

>

> >

>

> > >

>

> >

>

> > > What you can do (though there may not be time now), is to get an

>

> > advocate to go with you to the IEP meeting (of course you can

>

> > postpone the IEP for another week or so if you talk to an advocate

>

> > and can get one to go with you with a weeks notice).

>

> >

>

> > >

>

> >

>

> > > An advocate is always a good resource to have in IEP meeting where

>

> > the school has a record of being difficult.

>

> >

>

> > >

>

> >

>

> > > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > >

>

> >

>

> > > Charlotte

>

> >

>

> > > iamwhimsygmail (DOT) com

>

> >

>

> > > http://whimsy. t35.com

>

> >

>

> > > [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Some of you might remember I have written before about our

>

> > struggle with school for my 7yo with lyme disease. We got neuropsych

>

> > testing with a lyme literate neuropsych which came up with lot of

>

> > cognitive deficits, language issues, sensory and attention issues,

>

> > and was interpreted and explained in the context of lyme disease.

>

> > The school insisted on their own testing; I got the reports back

>

> > last week and the dreaded IEP mtg to discuss is tomorrow. All that

>

> > is on the neuropsych report has been discredited (no surprise), by

>

> > the school either saying they got different results, or the cog

>

> > deficits that did come up were attriuted to attention issues and a

>

> > label of ADHD was splapped on. They say he has no language issues. I

>

> > called a private language pathologist today who spoke to me at

>

> > length, and it is clear that she would not be able to interpret the

>

> > symptoms in context of Lyme. Problems with reading could be

>

> > language, could be attentional. He could benefit

>

> >

>

> > > from small classes of a private school, or he could need language

>

> > and reading resources a private school does not have. I am reluctant

>

> > to get a full eval with her, as I think she would just label him

>

> > with ADHD too. She says an ADHD label could work in our favor to get

>

> > accomodations; the lyme literate neuropsych tells me not to have him

>

> > labeled that. It is all so layered and complicated, I don't know

>

> > what to fight for or what school setting is best for him anymore. My

>

> > head is spinning and I don't feel like there is anyone qualified to

>

> > tell us really what is going on with him and to advise us. Because

>

> > we think this is congenital, I have no baseline to go on.

>

> >

>

> > > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > >

>

> >

>

> > > Thanks,

>

> >

>

> > > Dara

>

> >

>

> > >

>

> >

>

> > >

[Guest guest]

Have your (completely natural) emotional response to being called the bad mom

(first or second line of defense of most school admins faced with a non-average

child of whatever flavor).  Congratulations, though, on not having it in front

of the teacher(s) because they would only have turned it against you.  (I am

reminded of the day, after my daughter had finished $5000 neurophsych testing

and been placed on ADHD medication by our wonderful psychiatrist, when the truly

idiotic and incompetent admin head of the kids' private elementary school told

me " If this medication doesn't work you might want to just admit that it's

behavioral. "   Ayuh.)  Over the years I have learned to document these comments

though.  I would write a response that " clarifies " the comment and reminds them

that on the record that he is seeing a known specialist and that as the expert

has explained all of this in documentation you dispute the characterization of

you as blowing it

out of proportion.

Another anecdote, about the 13 year old son of a friend of mine who I am SURE

has bad neuropsych Lyme  (mom hasn't gotten around to testing with Igenex --

pediatrician refused to sign the order form, even though mom said she'd pay for

it -- what next?) -- she works tirelessly with him after school every day on his

homework and projects, organizing, emotional stuff -- and at the IEP meeting the

school told her that he is doing fine and what is the big deal -- refusing to

recognize that if a child needs that much intervention he clearly would not be

fine at all if it were withheld.  Again, trap and blame the mom.

I am proud of your forbearance today and I hope it ends productively.

Onward.

Natasha

From: darabeth2003 <dara.alewine@...>

Subject: Re: [ ] Feel like I am going crazy!

Date: Wednesday, May 5, 2010, 5:14 PM

 

Thought I would let you know how the mtg went. The outcome was as I

predicted- not good or helpful- but I was pretty satisfied with my performance.

I am now in touch with an advocate if we decide to go forward with the process.

(Still considering pulling him out of the school)

The kicker was this though- in talking about what the school ID's as my son's

lack of confidence- which I think is anxiety- the teacher told me that I was

making his issues bigger than they actually are, and by doing all of the testing

and " dragging him to Mass or whereever " , I am causing him to think something is

wrong with him and affecting his self esteem. She was actually referring to

taking him to CT to see Dr. J. I reminded her of Jonah's medical condition for

which he receives treatment with an expert and most of the testing she is

referring to is testing the school has insisted on, not me. I wish I had really

laid into her,but was trying to keep my cool.

Talk about someone who truly discounts Lyme disease.

I could go on and on. . . It is hard to seperate my emotional response to this

teacher and IEP team when making a decision for my son about what the right

placement is for him.

Dara

>

> >

>

> > >

>

> >

>

> > > Hi Dara,

>

> >

>

> > > I agree with Charlotte. I have been fighting with the school

>

> > district for my son for 4 years now.He was labeled with ADHD, OCD,

>

> > Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > >

>

> >

>

> > > What I did was I took the OCD,ADHD and Tourettes label, because my

>

> > son has lyme and PANDAS, which can cause all the symptoms of ocd,

>

> > ADHD, etc, etc, and I used that to get him the IEP. It has been a

>

> > huge constant fight.They do not recognize chronic lyme , nor do they

>

> > recognize the PANDAS in my son's case because they are still

>

> > " controversial "

>

> >

>

> > >

>

> >

>

> > > I have had to prove to them, that by law, they have to recognize

>

> > my son's strengths and weaknessess and plan an appropriate program

>

> > based on that.

>

> >

>

> > >

>

> >

>

> > > I hope this helps some

>

> >

>

> > > Hugs

>

> >

>

> > > Judy

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > ____________ _________ _________ __

>

> >

>

> > > From: CT <iamwhimsy@ ..>

>

> >

>

> > >

>

> >

>

> > > Sent: Mon, May 3, 2010 3:29:00 PM

>

> >

>

> > > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Â

>

> >

>

> > > IEP's are need driven, not dx driven (by law). The trick is to get

>

> > a dx that will allow for the services that are needed. It's possible

>

> > that accepting the label of ADHD and getting an IEP under that

>

> > label, will give you the services that your child needs.

>

> >

>

> > >

>

> >

>

> > > What you can do (though there may not be time now), is to get an

>

> > advocate to go with you to the IEP meeting (of course you can

>

> > postpone the IEP for another week or so if you talk to an advocate

>

> > and can get one to go with you with a weeks notice).

>

> >

>

> > >

>

> >

>

> > > An advocate is always a good resource to have in IEP meeting where

>

> > the school has a record of being difficult.

>

> >

>

> > >

>

> >

>

> > > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > >

>

> >

>

> > > Charlotte

>

> >

>

> > > iamwhimsygmail (DOT) com

>

> >

>

> > > http://whimsy. t35.com

>

> >

>

> > > [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Some of you might remember I have written before about our

>

> > struggle with school for my 7yo with lyme disease. We got neuropsych

>

> > testing with a lyme literate neuropsych which came up with lot of

>

> > cognitive deficits, language issues, sensory and attention issues,

>

> > and was interpreted and explained in the context of lyme disease.

>

> > The school insisted on their own testing; I got the reports back

>

> > last week and the dreaded IEP mtg to discuss is tomorrow. All that

>

> > is on the neuropsych report has been discredited (no surprise), by

>

> > the school either saying they got different results, or the cog

>

> > deficits that did come up were attriuted to attention issues and a

>

> > label of ADHD was splapped on. They say he has no language issues. I

>

> > called a private language pathologist today who spoke to me at

>

> > length, and it is clear that she would not be able to interpret the

>

> > symptoms in context of Lyme. Problems with reading could be

>

> > language, could be attentional. He could benefit

>

> >

>

> > > from small classes of a private school, or he could need language

>

> > and reading resources a private school does not have. I am reluctant

>

> > to get a full eval with her, as I think she would just label him

>

> > with ADHD too. She says an ADHD label could work in our favor to get

>

> > accomodations; the lyme literate neuropsych tells me not to have him

>

> > labeled that. It is all so layered and complicated, I don't know

>

> > what to fight for or what school setting is best for him anymore. My

>

> > head is spinning and I don't feel like there is anyone qualified to

>

> > tell us really what is going on with him and to advise us. Because

>

> > we think this is congenital, I have no baseline to go on.

>

> >

>

> > > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > >

>

> >

>

> > > Thanks,

>

> >

>

> > > Dara

>

> >

>

> > >

>

> >

>

> > >

[Guest guest]

Dara,

Remember that by pulling him out of school voluntarily, they will not be

responsible for providing services.

Be careful if your intention is to get him services!!!!

Hugs

Judy

 

________________________________

From: darabeth2003 <dara.alewine@...>

Sent: Wed, May 5, 2010 8:14:00 PM

Subject: Re: [ ] Feel like I am going crazy!

 

Thought I would let you know how the mtg went. The outcome was as I predicted-

not good or helpful- but I was pretty satisfied with my performance. I am now in

touch with an advocate if we decide to go forward with the process. (Still

considering pulling him out of the school)

The kicker was this though- in talking about what the school ID's as my son's

lack of confidence- which I think is anxiety- the teacher told me that I was

making his issues bigger than they actually are, and by doing all of the testing

and " dragging him to Mass or whereever " , I am causing him to think something is

wrong with him and affecting his self esteem. She was actually referring to

taking him to CT to see Dr. J. I reminded her of Jonah's medical condition for

which he receives treatment with an expert and most of the testing she is

referring to is testing the school has insisted on, not me. I wish I had really

laid into her,but was trying to keep my cool.

Talk about someone who truly discounts Lyme disease.

I could go on and on. . . It is hard to seperate my emotional response to this

teacher and IEP team when making a decision for my son about what the right

placement is for him.

Dara

>

> >

>

> > >

>

> >

>

> > > Hi Dara,

>

> >

>

> > > I agree with Charlotte. I have been fighting with the school

>

> > district for my son for 4 years now.He was labeled with ADHD, OCD,

>

> > Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > >

>

> >

>

> > > What I did was I took the OCD,ADHD and Tourettes label, because my

>

> > son has lyme and PANDAS, which can cause all the symptoms of ocd,

>

> > ADHD, etc, etc, and I used that to get him the IEP. It has been a

>

> > huge constant fight.They do not recognize chronic lyme , nor do they

>

> > recognize the PANDAS in my son's case because they are still

>

> > " controversial "

>

> >

>

> > >

>

> >

>

> > > I have had to prove to them, that by law, they have to recognize

>

> > my son's strengths and weaknessess and plan an appropriate program

>

> > based on that.

>

> >

>

> > >

>

> >

>

> > > I hope this helps some

>

> >

>

> > > Hugs

>

> >

>

> > > Judy

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > ____________ _________ _________ __

>

> >

>

> > > From: CT <iamwhimsy@ ..>

>

> >

>

> > >

>

> >

>

> > > Sent: Mon, May 3, 2010 3:29:00 PM

>

> >

>

> > > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Â

>

> >

>

> > > IEP's are need driven, not dx driven (by law). The trick is to get

>

> > a dx that will allow for the services that are needed. It's possible

>

> > that accepting the label of ADHD and getting an IEP under that

>

> > label, will give you the services that your child needs.

>

> >

>

> > >

>

> >

>

> > > What you can do (though there may not be time now), is to get an

>

> > advocate to go with you to the IEP meeting (of course you can

>

> > postpone the IEP for another week or so if you talk to an advocate

>

> > and can get one to go with you with a weeks notice).

>

> >

>

> > >

>

> >

>

> > > An advocate is always a good resource to have in IEP meeting where

>

> > the school has a record of being difficult.

>

> >

>

> > >

>

> >

>

> > > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > >

>

> >

>

> > > Charlotte

>

> >

>

> > > iamwhimsygmail (DOT) com

>

> >

>

> > > http://whimsy. t35.com

>

> >

>

> > > [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Some of you might remember I have written before about our

>

> > struggle with school for my 7yo with lyme disease. We got neuropsych

>

> > testing with a lyme literate neuropsych which came up with lot of

>

> > cognitive deficits, language issues, sensory and attention issues,

>

> > and was interpreted and explained in the context of lyme disease.

>

> > The school insisted on their own testing; I got the reports back

>

> > last week and the dreaded IEP mtg to discuss is tomorrow. All that

>

> > is on the neuropsych report has been discredited (no surprise), by

>

> > the school either saying they got different results, or the cog

>

> > deficits that did come up were attriuted to attention issues and a

>

> > label of ADHD was splapped on. They say he has no language issues. I

>

> > called a private language pathologist today who spoke to me at

>

> > length, and it is clear that she would not be able to interpret the

>

> > symptoms in context of Lyme. Problems with reading could be

>

> > language, could be attentional. He could benefit

>

> >

>

> > > from small classes of a private school, or he could need language

>

> > and reading resources a private school does not have. I am reluctant

>

> > to get a full eval with her, as I think she would just label him

>

> > with ADHD too. She says an ADHD label could work in our favor to get

>

> > accomodations; the lyme literate neuropsych tells me not to have him

>

> > labeled that. It is all so layered and complicated, I don't know

>

> > what to fight for or what school setting is best for him anymore. My

>

> > head is spinning and I don't feel like there is anyone qualified to

>

> > tell us really what is going on with him and to advise us. Because

>

> > we think this is congenital, I have no baseline to go on.

>

> >

>

> > > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > >

>

> >

>

> > > Thanks,

>

> >

>

> > > Dara

>

> >

>

> > >

>

> >

>

> > >

[Guest guest]

Thanks Natasha

I come up with a thousand things I wish I said to her- but am trying to let it

go knowing it would not make a difference.

Your ending example reminded me of the comment my husband made to the teacher in

the midst of this exchange- that my son is doing as well as he is becauase of

all of the intervention he has had (by us), not in spite of it. I also

blatantly added that I refused to be blamed for my son's issues and the teacher

said that is not what she was saying. Oh really???

I will work on that response you suggested.

Dara

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Hi Dara,

>

> >

>

> > >

>

> >

>

> > > > I agree with Charlotte. I have been fighting with the school

>

> >

>

> > > district for my son for 4 years now.He was labeled with ADHD, OCD,

>

> >

>

> > > Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > What I did was I took the OCD,ADHD and Tourettes label, because my

>

> >

>

> > > son has lyme and PANDAS, which can cause all the symptoms of ocd,

>

> >

>

> > > ADHD, etc, etc, and I used that to get him the IEP. It has been a

>

> >

>

> > > huge constant fight.They do not recognize chronic lyme , nor do they

>

> >

>

> > > recognize the PANDAS in my son's case because they are still

>

> >

>

> > > " controversial "

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > I have had to prove to them, that by law, they have to recognize

>

> >

>

> > > my son's strengths and weaknessess and plan an appropriate program

>

> >

>

> > > based on that.

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > I hope this helps some

>

> >

>

> > >

>

> >

>

> > > > Hugs

>

> >

>

> > >

>

> >

>

> > > > Judy

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > ____________ _________ _________ __

>

> >

>

> > >

>

> >

>

> > > > From: CT <iamwhimsy@ ..>

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Sent: Mon, May 3, 2010 3:29:00 PM

>

> >

>

> > >

>

> >

>

> > > > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Â

>

> >

>

> > >

>

> >

>

> > > > IEP's are need driven, not dx driven (by law). The trick is to get

>

> >

>

> > > a dx that will allow for the services that are needed. It's possible

>

> >

>

> > > that accepting the label of ADHD and getting an IEP under that

>

> >

>

> > > label, will give you the services that your child needs.

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > What you can do (though there may not be time now), is to get an

>

> >

>

> > > advocate to go with you to the IEP meeting (of course you can

>

> >

>

> > > postpone the IEP for another week or so if you talk to an advocate

>

> >

>

> > > and can get one to go with you with a weeks notice).

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > An advocate is always a good resource to have in IEP meeting where

>

> >

>

> > > the school has a record of being difficult.

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Charlotte

>

> >

>

> > >

>

> >

>

> > > > iamwhimsygmail (DOT) com

>

> >

>

> > >

>

> >

>

> > > > http://whimsy. t35.com

>

> >

>

> > >

>

> >

>

> > > > [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Some of you might remember I have written before about our

>

> >

>

> > > struggle with school for my 7yo with lyme disease. We got neuropsych

>

> >

>

> > > testing with a lyme literate neuropsych which came up with lot of

>

> >

>

> > > cognitive deficits, language issues, sensory and attention issues,

>

> >

>

> > > and was interpreted and explained in the context of lyme disease.

>

> >

>

> > > The school insisted on their own testing; I got the reports back

>

> >

>

> > > last week and the dreaded IEP mtg to discuss is tomorrow. All that

>

> >

>

> > > is on the neuropsych report has been discredited (no surprise), by

>

> >

>

> > > the school either saying they got different results, or the cog

>

> >

>

> > > deficits that did come up were attriuted to attention issues and a

>

> >

>

> > > label of ADHD was splapped on. They say he has no language issues. I

>

> >

>

> > > called a private language pathologist today who spoke to me at

>

> >

>

> > > length, and it is clear that she would not be able to interpret the

>

> >

>

> > > symptoms in context of Lyme. Problems with reading could be

>

> >

>

> > > language, could be attentional. He could benefit

>

> >

>

> > >

>

> >

>

> > > > from small classes of a private school, or he could need language

>

> >

>

> > > and reading resources a private school does not have. I am reluctant

>

> >

>

> > > to get a full eval with her, as I think she would just label him

>

> >

>

> > > with ADHD too. She says an ADHD label could work in our favor to get

>

> >

>

> > > accomodations; the lyme literate neuropsych tells me not to have him

>

> >

>

> > > labeled that. It is all so layered and complicated, I don't know

>

> >

>

> > > what to fight for or what school setting is best for him anymore. My

>

> >

>

> > > head is spinning and I don't feel like there is anyone qualified to

>

> >

>

> > > tell us really what is going on with him and to advise us. Because

>

> >

>

> > > we think this is congenital, I have no baseline to go on.

>

> >

>

> > >

>

> >

>

> > > > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > > Thanks,

>

> >

>

> > >

>

> >

>

> > > > Dara

>

> >

>

> > >

>

> >

>

> > > >

>

> >

>

> > >

>

> >

>

> > > >

[Guest guest]

I have been through all of this as well.

 I had to stop doing homework with my son, so they could see how much stress it

was putting on him after being at school all day. I had it put into the IEP that

it was to be stopped until further notice.

I let them teach him, and now they are constantly writing me notes, calling me

in for meetings , etc, because they don't know what to do with him.They now see

it is not me.

They still believe my son's issues are behavioral though, even after all the

documentation I have brought in, pamphlets, doctors,etc.

Make sure you tape every single meeting!!!!!!!

When you  get your " minutes " back, correct them and send them back. You will

have the tape , so it is not a "

he said, she said " situation.

I will be thinking of you!!!!

Hugs

Judy

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Wed, May 5, 2010 8:25:58 PM

Subject: Re: [ ] Feel like I am going crazy!

 

Have your (completely natural) emotional response to being called the bad mom

(first or second line of defense of most school admins faced with a non-average

child of whatever flavor).  Congratulations, though, on not having it in front

of the teacher(s) because they would only have turned it against you.  (I am

reminded of the day, after my daughter had finished $5000 neurophsych testing

and been placed on ADHD medication by our wonderful psychiatrist, when the truly

idiotic and incompetent admin head of the kids' private elementary school told

me " If this medication doesn't work you might want to just admit that it's

behavioral. "   Ayuh.)  Over the years I have learned to document these comments

though.  I would write a response that " clarifies " the comment and reminds them

that on the record that he is seeing a known specialist and that as the expert

has explained all of this in documentation you dispute the characterization of

you as blowing it

out of proportion.

Another anecdote, about the 13 year old son of a friend of mine who I am SURE

has bad neuropsych Lyme  (mom hasn't gotten around to testing with Igenex --

pediatrician refused to sign the order form, even though mom said she'd pay for

it -- what next?) -- she works tirelessly with him after school every day on his

homework and projects, organizing, emotional stuff -- and at the IEP meeting the

school told her that he is doing fine and what is the big deal -- refusing to

recognize that if a child needs that much intervention he clearly would not be

fine at all if it were withheld.  Again, trap and blame the mom.

I am proud of your forbearance today and I hope it ends productively.

Onward.

Natasha

From: darabeth2003 <dara.alewine@ verizon.net>

Subject: Re: [ ] Feel like I am going crazy!

Date: Wednesday, May 5, 2010, 5:14 PM

 

Thought I would let you know how the mtg went. The outcome was as I predicted-

not good or helpful- but I was pretty satisfied with my performance. I am now in

touch with an advocate if we decide to go forward with the process. (Still

considering pulling him out of the school)

The kicker was this though- in talking about what the school ID's as my son's

lack of confidence- which I think is anxiety- the teacher told me that I was

making his issues bigger than they actually are, and by doing all of the testing

and " dragging him to Mass or whereever " , I am causing him to think something is

wrong with him and affecting his self esteem. She was actually referring to

taking him to CT to see Dr. J. I reminded her of Jonah's medical condition for

which he receives treatment with an expert and most of the testing she is

referring to is testing the school has insisted on, not me. I wish I had really

laid into her,but was trying to keep my cool.

Talk about someone who truly discounts Lyme disease.

I could go on and on. . . It is hard to seperate my emotional response to this

teacher and IEP team when making a decision for my son about what the right

placement is for him.

Dara

>

> >

>

> > >

>

> >

>

> > > Hi Dara,

>

> >

>

> > > I agree with Charlotte. I have been fighting with the school

>

> > district for my son for 4 years now.He was labeled with ADHD, OCD,

>

> > Bipolar, Tourettes, PDD NOS, etc,

>

> >

>

> > >

>

> >

>

> > > What I did was I took the OCD,ADHD and Tourettes label, because my

>

> > son has lyme and PANDAS, which can cause all the symptoms of ocd,

>

> > ADHD, etc, etc, and I used that to get him the IEP. It has been a

>

> > huge constant fight.They do not recognize chronic lyme , nor do they

>

> > recognize the PANDAS in my son's case because they are still

>

> > " controversial "

>

> >

>

> > >

>

> >

>

> > > I have had to prove to them, that by law, they have to recognize

>

> > my son's strengths and weaknessess and plan an appropriate program

>

> > based on that.

>

> >

>

> > >

>

> >

>

> > > I hope this helps some

>

> >

>

> > > Hugs

>

> >

>

> > > Judy

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > ____________ _________ _________ __

>

> >

>

> > > From: CT <iamwhimsy@ ..>

>

> >

>

> > >

>

> >

>

> > > Sent: Mon, May 3, 2010 3:29:00 PM

>

> >

>

> > > Subject: Re: [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Â

>

> >

>

> > > IEP's are need driven, not dx driven (by law). The trick is to get

>

> > a dx that will allow for the services that are needed. It's possible

>

> > that accepting the label of ADHD and getting an IEP under that

>

> > label, will give you the services that your child needs.

>

> >

>

> > >

>

> >

>

> > > What you can do (though there may not be time now), is to get an

>

> > advocate to go with you to the IEP meeting (of course you can

>

> > postpone the IEP for another week or so if you talk to an advocate

>

> > and can get one to go with you with a weeks notice).

>

> >

>

> > >

>

> >

>

> > > An advocate is always a good resource to have in IEP meeting where

>

> > the school has a record of being difficult.

>

> >

>

> > >

>

> >

>

> > > Good luck, the fight isn't easy, but it's so worth it.

>

> >

>

> > >

>

> >

>

> > > Charlotte

>

> >

>

> > > iamwhimsygmail (DOT) com

>

> >

>

> > > http://whimsy. t35.com

>

> >

>

> > > [ ] Feel like I am going crazy!

>

> >

>

> > >

>

> >

>

> > > Some of you might remember I have written before about our

>

> > struggle with school for my 7yo with lyme disease. We got neuropsych

>

> > testing with a lyme literate neuropsych which came up with lot of

>

> > cognitive deficits, language issues, sensory and attention issues,

>

> > and was interpreted and explained in the context of lyme disease.

>

> > The school insisted on their own testing; I got the reports back

>

> > last week and the dreaded IEP mtg to discuss is tomorrow. All that

>

> > is on the neuropsych report has been discredited (no surprise), by

>

> > the school either saying they got different results, or the cog

>

> > deficits that did come up were attriuted to attention issues and a

>

> > label of ADHD was splapped on. They say he has no language issues. I

>

> > called a private language pathologist today who spoke to me at

>

> > length, and it is clear that she would not be able to interpret the

>

> > symptoms in context of Lyme. Problems with reading could be

>

> > language, could be attentional. He could benefit

>

> >

>

> > > from small classes of a private school, or he could need language

>

> > and reading resources a private school does not have. I am reluctant

>

> > to get a full eval with her, as I think she would just label him

>

> > with ADHD too. She says an ADHD label could work in our favor to get

>

> > accomodations; the lyme literate neuropsych tells me not to have him

>

> > labeled that. It is all so layered and complicated, I don't know

>

> > what to fight for or what school setting is best for him anymore. My

>

> > head is spinning and I don't feel like there is anyone qualified to

>

> > tell us really what is going on with him and to advise us. Because

>

> > we think this is congenital, I have no baseline to go on.

>

> >

>

> > > DOES anyone know of a lyme literate speech pathologist?

>

> >

>

> > >

>

> >

>

> > > Thanks,

>

> >

>

> > > Dara

>

> >

>

> > >

>

> >

>

> > >