504 -- "ED" qualifier

[smartyjones]

as we consider 504 for ds12,it would likely qualify under "ED" because

• although I do believe him to have pandas/pans, he is rather mild. with onset 3 years ago, we already saw integrative doc for ds9, so went directly to him for ds12. this doc is not so jazzed to write official letter but more likely to write supplemental letter of support when there is another doc doing diagnosis on more traditional terms (this is fine with me, I'm not interested in trying to change this). he did have elevated titers with onset, but there isn't so much documentation about it, b/c we went directly to integrative. so - I don't easily have medical letter stating pandas/pans
• pediatrician has written in his school form, 'social anxiety disorder', 2 years ago
• psych will write letter of either social anxiety disorder or anxiety disorder - nos
• the problems that are occurring are actually social anxiety issues - he may have exhibited anyway not due to pandas/pans
• pandas symptoms if exacerbation are mild - he would likely have flown under the radar if we didn't know about ds9 (of course, they could have gotten worse if not treated, but it was)
• I feel if he does have exacerbation, we can treat it quickly; if not, we could regroup then. I don't want this now for possible problems that may not happen
• I don't really want this for specific accommodations but more for if there is a problem, there is backup that things are not always as they seem on the surface

I don't imagine I would ever have allowed ED for ds9 as primary qualifier. I easily have medical docs letters, his symptoms are much more severe and were more related to pandas.

 

with disastrous situation with ds9 at other school, they tried to change his OHI 504 to ED IEP to railroad him into a level V school he never should be at, so I am leery of ED and what it could mean/where it could go.

 

please share thoughts and advice. thanks!

[dcmom]

Smarty- I don't remember exactly, but my dd's 504 is for social anxiety more than pandas - but I think it just fell under OHI (other health impaired). Someone else here can help shed light on options, I am sure.

[MomWithOCDSon]

Smarty -- We may be in the minority, but we did, indeed, go from an OHI 504 to an ED IEP. Admittedly, at the point at which we finally got the IEP, however, DS was in his worst state ever, and I probably would've opened up a vein and/or signed over the deed to my house to get him help at that point. So I was not overly concerned with or vigilant about the coding. The school didn't "buck" the PANDAS dx or those pieces of the IEP request; it just felt that, given the results of the testing and the behavioral issues that DS was manifesting at the time, an ED "label" was the most appropriate and best fit for incorporating the services and considerations we were seeking.

 

I'm certain that it varies considerably from school to school, staff to staff, how either a 504 or an IEP are recognized and implemented. My general sense of it, through DS's academic experiences, is that the older the kid gets . . . and perhaps also the brighter he is (goes to classes he's in and expectations attached thereto) . . . the less likely teachers are to just automatically adapt their cirriculums or their expectations based on any dx or classification. I think some teachers get jaded over the years and are quick to judge that they're the victims of various teenage manipulations, while others might be more novice and while having a tendency toward making accommodations whether or not they're legitimized by paperwork, are reluctant to do so in the event their department heads or other supervision would take issue with it.

 

Again, I thank my lucky stars every day that we have been extraordinarily blessed by our school districts and some particular individuals within them who have bent over backwards to help us set DS up for success. Only once did we feel even remotely "rail-roaded" by one individual with a little bit of power, and, again, some more experienced, level and politically-expedient heads at the school prevailed, had our backs, and effectively worked "around" this one individual to effectuate the great, positive outcome for DS. I suppose there's almost always one in the crowd that operates that way ("my way or the highway"), but you can probably look around the table at that point and catch the supportive glimpses of one or two who aren't buying what that person is selling either and will be in your corner.

 

I suppose I may yet come to see some negative consequences to the "labels" we've allowed to be tied to our DS over the years, but my fears have not, to this point, been validated. I was initially afraid of a 504 because I didn't want him "labeled," didn't want teachers to whom he was assigned for the following year looking at his file and automatically and prematurely making assumptions about who DS was, what he had to contribute to their classes, etc. And those fears grew when we bumped up to the IEP; I was convinced that he would be "branded" in high school as an undesirable student in the upper level, mainstream classes for which he was intellectually suited, and that he would suffer socially from the SPED classification, too. The reality, however, has been far more positive than I ever could've dreamed. Yes, there are those peers who are heartless and gutless and get their thrills out of tormenting "quirky" boys like DS. And there is that one teacher every year who resents being asked to bend when DS genuinely needs an accommodation. But they're rare, and for every one of those, there are 10 others who rally to DS's defense, who encourage him and inspire him and join in his senses of humor and scarcasm and make him feel rewarded and wanted and valued. And they don't give a hoot if he's got a 504 or an IEP, or if it's coded ED or OHI or ABC.

 

Can you tell I'm a sort of "ends justifies the means" thinker, especially on this topic? I don't know that there's any one right answer, but I think you're wise to solicit experiences and opinions, and I know you'll also be wise in listening to your gut and following your instincts as you survey the landscape in which you'll be seeking the help your DS needs. Good luck!