Re: Feel like I am going crazy!NATASHA

May 4, 2010

Natasha,

You have been so helpful all along the way for me- thank you! I only hope I can

be as articulate as you in the meeting today. My own lyme brain is not really a

strength for that right now. In the end I am fighting for such few things- a

reading specialist, not to be timed on tests, a quiet place to go when he is

feeling overwhelmed and a few other seemingly easy accomodations. It does bug me

that he is so midunderstood, and no one in the school has any investment in

making things better. But trying to let that part go. . .

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!

>

> >

>

> > Ã‚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

>

> >

>

> >

May 4, 2010

Yrd.Â The main thing is, let them blather on.Â Then just quietly and firmly

(and unemotionally) stick to your guns on this.Â I have heard of situations

where you want accomodations and the district has their person test your kid

because you don't have test results, but I have NEVER heard that if you spend

the money on an expert they can believe theirs more than yours.Â That is crazy.

One thing I also found very helpful in preparation was to create a table where I

listed the diagnoses in column 1, the individual symptoms experienced by my

child in column 2 (we know two different kids can experience Lyme and Co in

completely different ways -- eg my older daughter was all pain, all the time and

my younger one is a neuropsych disaster but only recently started with the joint

pain), the way it affects classroom performance in column 3, and the requested

accomodation in column 4.Â It laid it all out for them and linked each specific

request to a cause and effect from Lyme.

You may be about to go in already for the meeting, but if you have time I highly

recommend this approach.Â By the way, I disagree with your doctor about not

labeling with ADHD.Â You can always go back and say you don't need an IEP/504

plan if the Lyme symptoms resolve, but it is so much easier to explain than

trying to go the " ADHD-like symptoms " route -- people like to think they know

all about Lyme and pretty much almost no one actually does who is not living

with it personally or in their friends/family.

Hope this helps and thinking of you today.Â As if any of us needed the

additional stress of these meetings.

Hugs

Natasha

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

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

Date: Tuesday, May 4, 2010, 8:15 AM

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