Re: Feel like I am going crazy! JUDY

[Guest guest]

Yes, I know Judy, about the lack of services in private school. Currently I am

asking for so little ( really, I don't understand what all the fighting is

about), I would be prepared to get services privately, instead of expend all of

this time and energy fighting the school system. For my son, the benefit of

smaller class sizes and more individualized attention may be worth it. What

makes me nervous is not knowing what his Lyme future holds, and if my son would

need a great deal more of intervention as we go along, it would become more of

an issue.

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,

I know exactly what you mean. I had to pull tooth and nail just to get a 504 to

start with.

It turns into a full time job trying to get anything.

That is the point I am reaching now. My son has taken a huge turn for the worse

and he needs services, that they do not want to provide.

I wish you luck and hugs

judy

________________________________

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

Sent: Wed, May 5, 2010 9:57:56 PM

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

 

Yes, I know Judy, about the lack of services in private school. Currently I am

asking for so little ( really, I don't understand what all the fighting is

about), I would be prepared to get services privately, instead of expend all of

this time and energy fighting the school system. For my son, the benefit of

smaller class sizes and more individualized attention may be worth it. What

makes me nervous is not knowing what his Lyme future holds, and if my son would

need a great deal more of intervention as we go along, it would become more of

an issue.

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

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >