Please help....school advice needed

[parxsafety307]

I could really use some input (brand new here). DS (7) was diagnosed by a neuropsychiatrist with PANS this past summer. With a letter from the M.D. I was able to secure a 504 (OHI). 1st semester went well, dsl was notably inattentive but received all A's. Second semester he had flu and attentiveness started declining. In 504 it is written to allow for breaks,extended test times,etc. He still managed to get A's/B's but attentiveness was still an issue. School now wants to do an evaluation for possible iep. I am seriously wandering whether or not to move forward with an evaluation. School district is large and only one other student has been diagnosed with this condition. This makes me nervous from the standpoint of inexperience and objectivity (had many interesting looks during the 504 meeting). Also the understanding that our kids with this dx need various testing methods to get any kind of useful 'data'. So I guess I am asking if I should let them evaluate my son, or flat out deny and let them continue with a 504? Teacher said he may qualify for GIEP, but the paperwork they sent home lists standard evaluation and nothing about 'gifted' testing. Any insight/advice would be appreciated.....my own anxiety level is off the charts with this situation. 😱 Thank you in advance.....

[MomWithOCDSon]

Our DS, also, was in a large public school district and initially had a 504 plan.  When he had his first really extreme exacerbation with extreme anxiety, OCD and attention issues, that's when the district suggested we move to an IEP.  Like you, I was reluctant at first, but I will tell you that it was the best thing we ever did.

Frankly, from what I hear, you and I are among the fortunate few for whom it is actually the school's idea that an IEP be implemented; more often than not, families feel they need/want an IEP for their kids to be successful in school, but the school drags its feet and throws up obstacles because these plans entail additional costs, paperwork, administration, etc. for them.

The testing, I think, is difficult for our kids, depending on where they are in their PANDAS/PANS or healing; talk with the school psychologist or whoever would be administering the testing about that.  In our case, we were able to arrange for a couple of briefer testing sessions over a couple of days so that DS's anxiety didn't skyrocket. 

Also, I would suggest being well-prepared for that first IEP meeting; "load" the conference table with people you know have your kid's back (as well as yours):  a favorite teacher (past or present) who seems to "get him;" a family friend or relative with some credentials (a teacher, a doctor, a psychologist) who can add some third-party color to a discussion of your son's challenges as well as his talents, etc.

The thing is, the IEP is a structured, fairly formal document and it can look imposing and have all sorts of red flags all over it in terms of how you may fear it will impact your kid.  But in the end, it is the human beings in your kid's academic realm who'll administer it, and there are usually at least a couple of people -- if not most of the educational professionals in the room -- who understand that the facts on the ground, and what's best for your kid, will likely require some deviation from and flexibility within the plan that doesn't necessarily make itself apparent in the document itself.  The special education teacher who became my son's first official "case worker" under his IEP took me aside after that first meeting and basically said, "Look, we have to jump through these hoops because of the regulations involved.  But I want you to know that I will do what's right for DS, whether it's within the written plan or not, and then it's MY job to maintain the paperwork trail in a way that works for both him and for the school."  And that's exactly what he did. 

And that's what every case worker for the remainder of my kid's public school career did, year after year.  I know we were very lucky, but I'd like to think we weren't one in a million in this regard.  For the most part, I think the folks that go into careers as special education teachers, school psychologists and social workers are truly in it to help our kids, and fulfilling all these regulations and paperwork is just part of the necessary evil in getting that done.  Now, the administration -- that can be a different story, since their primary charge can be to make sure the school abides by all the regulations and is not subject to any negative impacts by virtue of an unfavorable audit regarding special ed programs, etc.  But they're not really the ones "in the trenches" with your kids, so it's the others who are that you want to know are in your kid's corner.  And in our experience, they usually are.

Also, my son was in the school's gifted program, as well as having an IEP; in our district, these two were far from mutually exclusive.  In fact, to some extent, "special needs" and intellectual gifts seem to come somewhat hand-in-hand -- "2E," or "Twice Exceptional."

Hope something here resonates on some level.  All the best to you and your family!

[parxsafety307]

MomwithOCDson:

Thank you so much for your words of encouragement. I have read numerous posts of yours and you are very knowledgeable on this subject matter! If I may ask: Did you have PANDAS as the primary DX for your son? Did you provide all documentation of diagnosis for the school? I have only provided a DX from the psych as well as recommendations that enabled the 504. I am not sure about releasing medical records (psych hx,etc.) because HIPPA is far from perfect and the whole 'let us see how you got to this dx',etc. gives me great pause. Again, points of view on this subject matter are welcome!

 

[MomWithOCDSon]

My son's official diagnosis for his 504 plan was obsessive compulsive disorder (OCD), as we were not successful in getting a PANDAS dx until many years later.  By the time they implemented the IEP, we added our freshly minted PANDAS dx to the paperwork, but I let the OCD primary label stand.  I know many families would not be comfortable with that and would have concerns that PANDAS issues and symptoms might get lost in the fray.  Plus the OCD label is decidedly "mental" as compared to a PANDAS dx which would, hopefully, be "medical," though since it still is not in the DSMV, I'm not sure how that might impact the legal issues surrounding the IEP paperwork. In the end, the PANDAS stuff didn't get lost in the shuffle in our case, and we were okay with the primary focus lying on the behavior set and how it might impact DS in the school environment.

We were not actually asked for any additional documentation or medical files; they did request permission to speak with our DS's psych and therapist, which we gave. In your case, they may ask for access to your diagnosing physician.  But I wouldn't think you'd need to give them carte blanche access to your DS's medical files.

Another tidbit I forgot to mention last time regarding IEP's that, in our case, weighed toward our agreeing to it when we did (pre-high school):  in our area, anyway, the older a kid gets, the harder it is to apply for and receive an IEP.  Now, hopefully, your kid won't even need one by the time he gets to high school; with IEPs, if you don't need/use accommodations over time, they generally get stripped from the plan due to your kid's "demonstrated progress."  But if, like some of our kids, he winds up doing the "PANS dance" for a few years and needs the accommodations periodically over the next few/several years, getting that IEP in place now might prove to be advantageous.  I guess, particularly in competitive school districts, some parents will lobby to get their high schoolers IEP plans for -- and pay neuropsych testing companies thousands of dollars for testing to support -- dx's like ADD, ADHD, processing delays, etc. so that they can qualify for advantageous accommodations (extra time, separate testing environment, etc.) for college entrance exams (ACT, SAT).  So the school districts have gotten much stingier with these requests and have erred on the side of ruling against, rather than for, such applications.

[Sirena]

Hi there--I agree about loading the conference table and I also recommend a book that I just got called "The Behavior Code" which looks at behavior--including difficulty attending--in a way that is more in line with how our kids go up and down and has lots of evil and IEP friendly ideas...