BREAKING IN YET ANOTHER PRINCIPAL!

[bubbasmom]

So I've already had to educate an elementary principal and teacher. Now moved up to Jr. High where I had to convince an assistant principal, seven teachers and a district administrator of PANDAS. Even though my son has had a total of NINE doctors diagnose him of this. We live in a relatively large city with 17 MAJOR hospitals, we're not some small hick town where medical personelle are hard to come by.

So now the assistant principal that I've spent all school year dealing with has now moved on to a new building leaving me to start from scratch with the head principal. So the head principals statements go something like this: I'M NOT SURE PANDAS EVEN EXISTS.....YOUR SON DOES NOT SHOW SYMPTOMS OF PANDAS HE JUST HAS A BEHAVIOR DISORDER.....HAS YOUR SON EVER BEEN TESTED FOR SPECIAL EDUCATION (to which I replied "what special education did you have in mind for the boy with an IQ of 130" he didn't laugh - go figure!)

 

So then he tells me if we'll let my son be put through the battery of 'their' tests and they get a ODD diagnosis, then when he is removed from a class he will 'discipline my son in a way appropriate to his personality and situation and then return him to the class'. Excuse me, isn't that what you are supposed to be doing anyway??

 

Does my son have ODD? Of course he does. ODD, OCD, ADD, ADHD, P.A.N.D.A.S., AND ABCDEFG also! SO WHAT!! Just flippin educate my son, discipline him only when necessary, tell the teachers to back off, and let us worry about his HEALTH!!!

 

(funny story.....my son got sent to his office for refusing to do work in class (because he didn't understand it and nobody would help him - he was in brain fart mode) so in the office my son just sat there. The principal said "am I to take this as you refusing to do this work"? Of course my son gave a simple "YEP". Oooo that burnt him up. He said I've been and educator for 17 years and I've never had a child say no to me!!! Served him right. Maybe you've never had a child with PANDAS whose brain is too swollen to function in class, huh? )

[thereishope]

So principals are PANDAS specialists now, huh? It's not their place to diagnosis. Do you need help assembling info or anything? If you want, message me his school address or email, I'll put together a packet and send him info...not that he'll understand even half of it. You don't have to take the offer, but it's there.

Edited April 13, 2010 by Vickie

[tpotter]

Hey bubbsmom...can I PLEASE take this to our Due Process hearing tomorrow??? It's already our 5th day of Due Process, stretched out since December 3, and I need a good laugh to share with our lawyer (who's fees are now up to over $25K (we hired her 2 years ago), not to mention the private school we had to put him in when he went into crisis 1 1/2 years ago, because our school district wouldn't honor the 504 plan we brought from NY with us! He ended up hospitalized for 4 days at CHOP in Philly, where, incidentally the ped. neurologist told us PANDAS was "voodoo.") In fact, we even had a nice little visit from Child and Youth last October (1 week to the day after we filed our Due Process claim), because "someone" decided to report me for Munchaussen's (we'd been warned they were going to do something like that, so we were completely prepared, and a quick call to Dr. L by Child and Youth took care of that one.) I really feel for you. Good luck.

[MomWithOCDSon]

I'M NOT SURE PANDAS EVEN EXISTS.....YOUR SON DOES NOT SHOW SYMPTOMS OF PANDAS HE JUST HAS A BEHAVIOR DISORDER.....HAS YOUR SON EVER BEEN TESTED FOR SPECIAL EDUCATION (to which I replied "what special education did you have in mind for the boy with an IQ of 130" he didn't laugh - go figure!)

Okay . . . I'm just going to put this out there because of our experience.

 

Our DS13 is in a public junior high school and we began last year with a 504 Plan in place from grammar school. For his first year in junior high we modified it a bit, but not much, as he was still in a good place.

 

When the s$i! hit the fan at the end of last year with this exacerbation and carried over into this (his 7th grade) year, we wanted to modify the 504 yet again, and the school actually suggested switching it to an IEP instead. The IEP actually categorizes DS as part of the "special education" program, even though DS, like your son, is intellectually gifted. I was initially worried about him being so categorized, and concerned about any stigma that might be attached to it, especially in light of his intelligence, but the positives of going with this plan eventually won me over.

 

Being qualified inside the special education program and granted an IEP means the school had to test him (he was tested by the school psychologist under very low-stress conditions) and they found that not only was he technically gifted, but that he has certain talents (verbal) and certain detriments (spatial), as well. So I didn't have to go to bat with them to make sure he was able to continue with the district's gifted education program, despite the other challenges he might have. The testing also proved to them, emphatically, that what was going on with DS was NOT behavioral, but organic on some level (they saw it as a "processing" and "anxiety" disorder because of DS's strong OCD behaviors, rather than PANDAS, but in the end, who cares so long as he gets the consideration and accommodations he needs to be happy and healthy in school?)

 

So, now DS is in school full time, and his IEP protects him from a lot of the BS. He has a case worker who is WONDERFUL and helps him advocate for himself with the occasional stiff, inflexible teacher, and he gets two weekly social worker sessions, as well: one by himself where he can just rant about his day if he needs to, and one with a couple of other boys in his grade that he can relate to.

 

The schools can be really frustrating and, even with this IEP and some very good people in my kid's corner, I still have to get in there and swing on occasion, and I expect I will have to continue to do that at times, right through the last day of high school. But part of the IEP plan, too, is to teach DS how to best advocate for himself and come to terms with each of the teachers, the academic expectations, the level of accommodations he truly needs as balanced against his intelligence, etc., so that he can mature and look after himself (hopefully with a college future) without his parents' ongoing involvement at a high level.

 

So, I guess what I'm suggesting in short is, the principal's attitude is unfortunate and not serving your son's best interests. That being said, our experience would suggest that you be careful not to throw the baby out with the bath water. The "special education" doesn't have to be exclusive of "gifted education," and it doesn't mean your kid gets stuck off in a corner somewhere with mentally challenged kids or anything else, especially since the law requires that each child be given the opportunity to learn "within the least restrictive environment possible." Maybe if your son can be granted an IEP and have a case worker on site that he knows will back him and is in his corner, he will feel more confident and less likely to display signs of the ODD, which is probably the principal's biggest issue at this point.

 

Just our experience and one point of view . . . . .

[smartyjones]

(to which I replied "what special education did you have in mind for the boy with an IQ of 130" he didn't laugh - go figure!)

'discipline my son in a way appropriate to his personality and situation and then return him to the class'.

Does my son have ODD? Of course he does. ODD, OCD, ADD, ADHD, P.A.N.D.A.S., AND ABCDEFG also! SO WHAT!!

 

 

i don't really know much about this - it's just been suggested to us for the future(when ds is more into 6th year and 1st grade) by our psych whom i do think is helpful. i do overwhelmingly think the physical health is the real issue - but then there is trying to discover ways to help with day-to-day functioning.

 

have you had neuropsychological testing? can your school get off the 'behavioral' aspect and dig deeper? there have been some past posts on here - unfortunately, i don't think they indicated it was so helpful. it's something i'll be looking into in the next 6-12 months. my son has had a few incidents in the classroom that on first surface appear to be defiance but with some other factors, the psych does believe there are indicators that he's having trouble processing information. she's interested in finding out what is happening with his processing b/c she likens it to repeatedly having a child with a hearing disability take an auditory test - it just doesn't work, no matter how hard you try or wish the child would 'just cooperate'.

 

a friend had this testing for her child last year and discovered that she was 'normal' in two types of processing and extremely high in another. this is seen as a disability b/c it's hard to integrate it all together. it's plausible to me that my son may be having trouble with this b/c he always (since age 2 or 3) had an amazing 'puzzle mind'. i think that if all of us have processing skills that add up to 100% and someone has one outrageously high, it probably stands to reason they'd be low in others.

 

i do feel for you that the principal has such an unfortunate attitude!

[Chemar]

bubbasmom

 

special ed doesnt mean the kid isnt bright or not good at academics...high IQ gifted kids can also be in special ed when they have health problems or other disorders

 

if your child doesnt need the IEP for academic stuff, maybe consider the plan 504 that covers so much other territory for accommodations

 

it really is worth fighting for IMHO, especially when you are dealing with someone like this principal sounds

 

there is another recent thread here

http://www.latitudes.org/forums/index.php?showtopic=7783

Edited April 13, 2010 by Chemar
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