Anyone have success gettin IEP for PANDAS

[airial95]

In addition to what I posted last night (from my Ipad - so sorry if it's full or typos!), we're just getting ready to start the IEP process with my PANDAS daughter. She's been a very mild case and her charter school has been very receptive to the accomodations we've asked for thus far, but to date we hadn't pursued an IEP.

 

About a month ago, I had a very candid conference with her teacher, who has a special ed background, on wether she feels we should have a 504 or IEP in place for her. She has a background in special education, so I thought her opinion would be useful. I'll share our conversation here - because it was insightful and maybe some of you have wondered the same things.

 

My daughter was a very mild case, emotional lability as her main symptom, which in school usually made her a little more shy and stand offish with the kids, and she would get upset about things a bit easier.

 

My specific question for her teacher was this: She may take a significant turn for the worse at any given time with any given infection (which she just has - thankfully we're with the same teacher!) would it be better to have an IEP/504 in place to address these issues BEFORE they pop up, or wait until it's an issue to pursue the process. I asked her VERY directly - will future teachers treat my daughter differently, see her as a burden, hassle, "problem child" or whatever when they see her come in with an IEP - especially in a case like this where she's "normal" and an extremely well behaved and bright child most of the time?

 

I was surprised at the response I got. She said that yes - in some cases, especially where teachers haven't had good training in how to deal with kids with any sort of needs, we're going to face an automatic prejudice and that teacher will pre-judge my kid. BUT - those are likely the exact same teachers that will fight you if she does have a flare up saying that it's just her acting out, there's nothing wrong with her, punish her for her issues, etc... So those are the exact teachers I'm worried about and would need to have the IEP in place for - it's a catch 22/no win situation. She also went on to say that the teachers who would respect the IEP the most - are likely the ones who wouldn't need it and would accomodate the issues with out it (like we are now) because they can see the fundamental change in my daughter.

 

Without saying it in so many words - she basically said that there's going to bound to be a few crappy teachers out there that it doesn't matter if you have the IEP or not - they're going to fight you, pre-judge your kid and think they know better. I think this is something that we all know, but hearing it from the horse's mouth really made me think.

 

We decided at that time since her issues weren't really a significant disruption to the classroom or her learning, and since the school is on board with the medical accomodations (strep notification, no sharing supplies, frequent bathroom trips, etc...) we should wait and see who her 1st grade teacher turns out to be (she informed me that there may be 1 or 2 that fall in to that "crappy" category!) and maybe start the process from there.

 

Now that she's had this last strep infection where all ###### has broken loose for the first time, her teacher and I have a new conference set for next week to re-evaluate and see if we need to pursue the full IEP.

 

I just thought it was an interesting perspective from a teacher with a special ed background - I guess we're damned if we do and damned if we don't!

[minimaxwell]

Please do your self a favor and hire an advocate. After many years of having an IEP I thought I was doing well by my daughter. Advocate was the best money ever spent (except for Dr. T). I no longer get any pushback. The are scared of my advocate! Now head of SPED shows up at all my meetings. I have gotten so many more accomadations. At the time I was thinking we might want an out of district placement. We no longer need that.

[philamom]

This is all great information, as my daughter just completed an evaluation for an IEP. The school psychologist met with my daughter privately for a few sessions. I'm not sure if it will be approved since my daughter was doing better while tested. She had a rough couple of months while off antibiotics, but is now back on them and improving. She currently attends 1/2 days with 3 hours wk after school tutoring.

 

If the IEP get's appproved, will it roll-over to the next year? She will be attending the same school. Thanks.

[peglem]

This is all great information, as my daughter just completed an evaluation for an IEP. The school psychologist met with my daughter privately for a few sessions. I'm not sure if it will be approved since my daughter was doing better while tested. She had a rough couple of months while off antibiotics, but is now back on them and improving. She currently attends 1/2 days with 3 hours wk after school tutoring.

 

If the IEP get's appproved, will it roll-over to the next year? She will be attending the same school. Thanks.

IEPs are good for 1 year from the time they were created, but can be amended at anytime.

[patric]

One other suggestion is to ask the current teacher or principal for a recommendation for a teacher for the upcoming year. The teachers really have the inside scoop and know who the other good teachers are. In our case, the principal called me last week and said he will place my son with a really good teacher who can address his specific needs for next year. I always either call or meet with the principal at this time of year to request this as this is the time they are making next years class lists. Having the 504 or IEP helps in this regard, but even without it, a lot of principals are receptive and want to help (not all though, and sometimes you get a brick wall, but it's worth a try:)

[tylermom]

My ds has had an OHI for Tourette Syndrome since he was in K. Now we are pretty sure that what he's had since 18 months old is not TS but PANDAS. The school has fought me tooth and nail and I finally decided to homeschool him for 4th and 5th grade. This past year he wanted to go to school because he would be going to a middle school. It's been AWFUL. This is a public school not private and it's in a good district. The 6th grade counselor started calling me the 2nd week of school because he was not focusing and already having F's on papers. By this Jan. the counselor called me to ask me if he had seen a neurologist before. WTH of course he has he has a DX of TS where does she think we got the DX from. These people are so stupid. She then decided to tell me she thinks my ds has a brain tumor. I asked her on what basis is she getting this from. She says because he is forgetful. OMG..I called his pedi office and talked with the nurse. The nurse could not believe that a schools counselor would come up with this mess. She talked to the dr. and he said he couldn't believe that she would be saying this about my ds and he said of course that my ds does not have a brain tumor and the forgetfulness is due to the ADD. The counselor wanted him in resource math class. I did not want him is this even though he was struggling in 6th grade math. I know from homeschooling him that he just needs 1 on 1 help and needed them to actually do his modifications in the class and send him to content mastery for extra help. They were not doing any of this. He went a whole 6 weeks without having one of his modifications done. The counselor wonders why he was doing so bad...HELLO do his mods and maybe he will do better in class. So they put him in R-Math and the teacher is horrible. She tells all the students in the class that the reason they are in the class is because they are not intelligent enough to make it in a regular classroom. She then tells them all the time how stupid they are if they don't understand a problem. I finally had enough and my dh and I went and had a conference with her and the 2 principals. She admitted that she talks to her students like that and she said that my ds is going have to get "tough skin" because when he gets in high school it will be worse. I couldn't believe my ears. What in the world has these public schools come to. So needless, to say we'll be homeschooling again.

[MomWithOCDSon]

My ds has had an OHI for Tourette Syndrome since he was in K. Now we are pretty sure that what he's had since 18 months old is not TS but PANDAS. The school has fought me tooth and nail and I finally decided to homeschool him for 4th and 5th grade. This past year he wanted to go to school because he would be going to a middle school. It's been AWFUL. This is a public school not private and it's in a good district. The 6th grade counselor started calling me the 2nd week of school because he was not focusing and already having F's on papers. By this Jan. the counselor called me to ask me if he had seen a neurologist before. WTH of course he has he has a DX of TS where does she think we got the DX from. These people are so stupid. She then decided to tell me she thinks my ds has a brain tumor. I asked her on what basis is she getting this from. She says because he is forgetful. OMG..I called his pedi office and talked with the nurse. The nurse could not believe that a schools counselor would come up with this mess. She talked to the dr. and he said he couldn't believe that she would be saying this about my ds and he said of course that my ds does not have a brain tumor and the forgetfulness is due to the ADD. The counselor wanted him in resource math class. I did not want him is this even though he was struggling in 6th grade math. I know from homeschooling him that he just needs 1 on 1 help and needed them to actually do his modifications in the class and send him to content mastery for extra help. They were not doing any of this. He went a whole 6 weeks without having one of his modifications done. The counselor wonders why he was doing so bad...HELLO do his mods and maybe he will do better in class. So they put him in R-Math and the teacher is horrible. She tells all the students in the class that the reason they are in the class is because they are not intelligent enough to make it in a regular classroom. She then tells them all the time how stupid they are if they don't understand a problem. I finally had enough and my dh and I went and had a conference with her and the 2 principals. She admitted that she talks to her students like that and she said that my ds is going have to get "tough skin" because when he gets in high school it will be worse. I couldn't believe my ears. What in the world has these public schools come to. So needless, to say we'll be homeschooling again.

 

That is inexcusable! I would be after this teacher's job, were I in your shoes. Probably the counselor's, also. I wish the emoticon had animated smoke coming out of the nose, or heat waves emanating from the head because stories like yours really steam me!

 

Hang in there! Maybe homeschooling is your best, path-of-least-resistance option, but if you're up for a fight, I feel certain you would win with a professional advocate and/or lawyer at your side. These people sound worse than ignorant . . . they sound malicious!