Need to vent - IEP meeting yesterday

[airial95]

We had our son's first IEP meeting yesterday with the school district. Based on his medical records and the initial assessments he was recommended for EELP Pre-K 3, possibly in the Emotionally Therapeutic classroom. We were given the heads up last week that they were having challenges coming up with goals for him since PANDAS is new to them and unique. Like every other parent here, we did all of our homework, got a special ed advocate to help, and of course collected lots of suggestions from you all and provided this all to them.

 

We walk into the meeting yesterday, and despite most of the team members agreeing that a regular ed classroom setting is the ultimate goal for our son, he's just not quite there yet and the EELP or ETH classroom would be the proper placement right now, the ESE director steamrolled over everyone and said no, he needs to stay in the private day care we're at now, and all they need to do is send an ESE teacher there for one hour a week to provide services, but mainly to "observe and collect data". Seriously??? We've been collecting data on this kid daily for 10 months - what do you want to know? He's also had about 87 assessments done in the last 10 months because of course every new doctor and therapist or program (like Early Steps and now the school district) can't possibly use the information from the previous ones so they have to do their own. Now we're going to start over and observe and collect more data? For 9 weeks? (her original recommendation).

 

The most frustrating things:

 

- this woman had a very preconcieved notion of what was going to be best for our child prior to the meeting, without a clear understanding of what PANDAS is or knowing anything about our son

- regardless of what the other folks in the room said, including the 3 psychologists, nurse and ESE teachers, this director ignored ALL of their input, and ours to push her own recommendation

- she did this even as she continued to remind us that this is a "team" and we're all part of the "team" and we need to make sure we're considering all "team" members input. Really???

- she said that since they know nothing about PANDAS and he's their first case they have no idea how this will impact him in an academic setting - that's why they need to collect more data. Even though Dr. Murphy sent them over a detailed list and description of how the disease affects the ACADEMIC SETTING!!!!

- because of the "infrequency" of his issues (only when exposed or sick) they're not sure how best to deal with that, it may be removal from the regular ed classes during just those times. Okay - first of all, I'm sure if you talked to his teachers now or us "infrequent" would not be the word we would use to describe our situation. Second - the number one reason we want special ed is because the only option they have at his current school is to REMOVE HIM FROM THE CLASSROOM - and this is not working, yet it's her brilliant idea of a solution?

- and my personal favorite - because he's developmentally advanced in all other areas other than emotional and behavioral, there's not really that much that they can do until his behavioral and emotional issues begin to affect the other areas. WHAT????????? So we have to wait for him to become so non-functional before we can get services? That is the most idiotic thing I've heard. Shouldn't we be trying to fix his issues BEFORE they affect the other areas???

 

We did get her to scale back her "observation and data collection" to just one month, I'm sure her 4 weeks of observation will allow her to completely solve the PANDAS puzzle that so many of us have been working on for so many years. We're meeting again next month - and personally I can't wait!

 

Sorry - I just had to vent. I couldn't believe how one woman could so steamroll a process that is supposed to be a "team" effort. AGGGGGHHHHHHH!!!!!!

[peglem]

I can identify with your sense of frustration. This is so maddening! I just want to make the point that the IEP should not be based upon the disorder, but on the child's needs. I'm sure they have experience with the needs your child has, even if they are unfamiliar with PANDAS. And as for how to do it when the needs fluctuate w/ flares- just make the accommodations "as needed". I'm so sorry this is happening to you and your child. IEP's can be so stressful.

[MomWithOCDSon]

I can identify with your sense of frustration. This is so maddening! I just want to make the point that the IEP should not be based upon the disorder, but on the child's needs. I'm sure they have experience with the needs your child has, even if they are unfamiliar with PANDAS. And as for how to do it when the needs fluctuate w/ flares- just make the accommodations "as needed". I'm so sorry this is happening to you and your child. IEP's can be so stressful.

 

I'll echo Peglem here. It is ludicrous for this woman to suggest that they've never before encountered a kid who is "developmentally advanced" in most areas, but suffers some behavioral/emotional challenges!

 

My guess is that this is less about PANDAS being an "unknown" than the district dragging its feet in admitting another child who needs services, since those services come at a cost to the district itself. If your DS is in a private setting now, is this at your sole cost (i.e., so the district isn't having to bear any of that at present)? If so, and the result of the IEP is that you're being told he has to remain there while they "observe" and perhaps render nominal services to him in that setting (an hour a day, I believe you said?), then I would counter that, as they've rendered the decision that your son cannot be appropriately accommodated within the district's available setting, then the district must cover the costs of your son remaining in an outside, private setting, rather than you! I've never encountered this with a child as young as yours, but I know that this is the case with older, school-age children: if they determine that the school is not an appropriate setting for meeting the kid's needs, then they have to fund the alternative setting. I know that the cost concern is not your primary one, but "hitting them where they live," by countering with financial concerns, may be a point of leverage for you, nonetheless.

 

We have a similar issue in our district with the "head honcho:" the Director of Special Services. She seems to have very little understanding of a kid's actual needs and most of her "suggestions" or "ideas" for contending with issues in the classroom are absolute garbage. She, too, tries to railroad and steamroll the teaching staff and the parents into accepting some written language in the IEP we clearly disagree with. Luckily for us, she's lacking in self-confidence and much of the teaching staff is very experienced and protective of our DS, and they stand up to her on his behalf, preventing the whole thing from going completely off the rails. When I've complained about her to other knowledgeable people, they remind me that she's essentially a paper-pusher; she's there to make sure that all the legal angles are covered so that when the government conducts an audit of the Special Ed provisions and funding in the district, she can safely say that she crossed all her "t's" and dotted all her "i's." The kid's best interest is not her Number One goal because that's not what gives her job security; the District hired her and keeps her in that role because she protects the District's bottom line and its position with the government watchdogs.

 

It sounds as though this woman you're dealing with is made of similar stuff. I'm glad you got it down to only 4 weeks of further "observation;" perhaps you can also request that this person who's coming in during that time to "assist and observe" be the one to help address any outbursts or issues your DS may have in their presence that would normally cause him to be removed from the classroom. If this person is going to be there for an hour per day, at least they can be responsible for helping him remain in the classroom for that hour! If I were in your shoes, I would also "confirm" that, as the District has determined that this private setting is currently the appropriate one for your DS, as opposed to the public school option, then the District will be paying the tuition for that month as well!

 

Sorry to hear you're hitting this roadblock. Really, people should think about the kids in these instances, instead of what it takes to cover their own butts!

[SarahJane]

I'm sorry that happened. I had very high hopes for you as I read your previous posts. Sadly, this is what the IEP process is like for so many people! Our ds(6) did go to Early Start for a speech delay when he was 3 (had some minor dev delays overlapping because once they find something they keep on adding to the list, then dev delays trumped the speech delay--hindsight is 20/20 & I understand so much more now!). IEP meetings are a nightmare even when they go well. You may ask around and see if there are any advocates that can go to the next meeting with you. We never did that, but I can see how it would be very beneficial to have a 3rd party there with a pure mind on the best benefits. Maybe even a friend can go with you...you can usually bring whomever you like. Why not build up your side of the table the way they do theirs? LOL!

 

We withdrew ds from Early Start after some upsetting issues when OT began in the classroom. Looking back, he was probably in a mild exacerbation from about Nov - March of that year. (We suspect early onset.) I do wonder how PANDAS is handled in school since it's not always present. We were undx'd last year & it hit the 2nd half of the year in kindergarten & let's just say it wasn't handled very well at all. I would think that even if you have the dx with an IEP in place for the dreaded exacerbation, that once it hits, the IEP isn't followed very well because we're all creatures of habit & they would be used to the model student that used to sit at that desk. As parents, even we do the same thing. Behavior at school is a BIGGIE and standing in line and being quiet and sitting still and basically all other round peg in round hole behavior...in early grades behavior seems to be more important than actual learning. So...exacerbations shut down most of that good beharior for our kids. IEPs are hard even if it's an ever-present condition...the transiency of PANDAS has to make it so much more difficult. I'm homeschooling & will do Montessori if/when we go back to a classroom. (Were on waiting list for Montessori this year & is a hidden blessing we didn't get in yet.)

 

GOOD LUCK!

[peglem]

I can identify with your sense of frustration. This is so maddening! I just want to make the point that the IEP should not be based upon the disorder, but on the child's needs. I'm sure they have experience with the needs your child has, even if they are unfamiliar with PANDAS. And as for how to do it when the needs fluctuate w/ flares- just make the accommodations "as needed". I'm so sorry this is happening to you and your child. IEP's can be so stressful.

 

I'll echo Peglem here. It is ludicrous for this woman to suggest that they've never before encountered a kid who is "developmentally advanced" in most areas, but suffers some behavioral/emotional challenges!

 

My guess is that this is less about PANDAS being an "unknown" than the district dragging its feet in admitting another child who needs services, since those services come at a cost to the district itself. If your DS is in a private setting now, is this at your sole cost (i.e., so the district isn't having to bear any of that at present)? If so, and the result of the IEP is that you're being told he has to remain there while they "observe" and perhaps render nominal services to him in that setting (an hour a day, I believe you said?), then I would counter that, as they've rendered the decision that your son cannot be appropriately accommodated within the district's available setting, then the district must cover the costs of your son remaining in an outside, private setting, rather than you! I've never encountered this with a child as young as yours, but I know that this is the case with older, school-age children: if they determine that the school is not an appropriate setting for meeting the kid's needs, then they have to fund the alternative setting. I know that the cost concern is not your primary one, but "hitting them where they live," by countering with financial concerns, may be a point of leverage for you, nonetheless.

 

We have a similar issue in our district with the "head honcho:" the Director of Special Services. She seems to have very little understanding of a kid's actual needs and most of her "suggestions" or "ideas" for contending with issues in the classroom are absolute garbage. She, too, tries to railroad and steamroll the teaching staff and the parents into accepting some written language in the IEP we clearly disagree with. Luckily for us, she's lacking in self-confidence and much of the teaching staff is very experienced and protective of our DS, and they stand up to her on his behalf, preventing the whole thing from going completely off the rails. When I've complained about her to other knowledgeable people, they remind me that she's essentially a paper-pusher; she's there to make sure that all the legal angles are covered so that when the government conducts an audit of the Special Ed provisions and funding in the district, she can safely say that she crossed all her "t's" and dotted all her "i's." The kid's best interest is not her Number One goal because that's not what gives her job security; the District hired her and keeps her in that role because she protects the District's bottom line and its position with the government watchdogs.

 

It sounds as though this woman you're dealing with is made of similar stuff. I'm glad you got it down to only 4 weeks of further "observation;" perhaps you can also request that this person who's coming in during that time to "assist and observe" be the one to help address any outbursts or issues your DS may have in their presence that would normally cause him to be removed from the classroom. If this person is going to be there for an hour per day, at least they can be responsible for helping him remain in the classroom for that hour! If I were in your shoes, I would also "confirm" that, as the District has determined that this private setting is currently the appropriate one for your DS, as opposed to the public school option, then the District will be paying the tuition for that month as well!

 

Sorry to hear you're hitting this roadblock. Really, people should think about the kids in these instances, instead of what it takes to cover their own butts!

Really good point! If the district is saying to send your child to private school- they have to pay for it.

[Stephanie2]

I'm so sorry. My first son was also denied sevices and I went to have 2 evaluations. Both times she picked up on his "aspberger, adhd and anxiety" tendencies but said that he would do just fine in the classroom (oh and back then he had a stuttering problem...no speech therapy was offered). Gee, and how does she know that? Because he was able to survive a one on one evaluation that was in a quite room without too many demands and sensory stimuli?

 

Unfortunately, these children usually do not get services until they get kicked out of preschool or they are severely disturbing the classroom, or it is effecting their grades. Can you get him kicked out of preschool? Pull his abx for a couple weeks and see what they think then (so not funny, and I don't mean you should REALLY pull his abx - LOL!)!!!

[airial95]

Quick update:

 

We already have an advocate on board - we were proactive in that because even though we're both educated people - my husband and I realized very quickly we were in over our head. She was scheduled to be at the meeting but her daughter got very ill that morning, so she sent us with all the ammo she could. Needless to say, she was not thrilled when she heard how it went. She called the school district, and I think we've already ruffled some feathers.

 

At the meeting last week, it was weekly visits (about 1 hour) to the day care to work with him. This week, it's already a bit different. They were at the day care for 2 hours this morning, and already have 8 more hours scheduled for this week and 8 for next week. We got a call today that the follow up meeting is being scheduled for the week before Thanksgiving, and that the focus of that meeting will be which class setting will be approrpriate (EELP or ET).

 

All of a sudden, after our advocates interference, the line has quickly changed from keeping him in his current setting to needing this 4 week evaluation time to figure out WHICH setting to place him in.

 

It will be interesting to see how this goes when we meet again in 4 weeks

[thereishope]

Heavy sigh. I'm sorry!

 

The idea of pulling him out of reg ed every time he has an exacerbation is bad. He needs stability and it would also label him to the other kids. Kids establish relationships with teachers and this idea would make things worse.

 

Does he already get any services from the school district? This woman you refer to, what's her title in the school district? At a certain age, the school district is required to provide services to kids that meet the criteria. They should not tell you he needs to stay in a private school.

 

Good luck!

[EmersonAilidh]

I don't have any experience with IEP jerks but I'm sorry!!! Just don't give up. My intermediate school (fifth & sixth grade) just kinda stuck me in there on bad days for the sake of the other kids, not myself. I was a "distraction". Funny how quick they are to throw the kids who DON'T want it in there, & deny those who do. UGH. So confusing!!! I don't know exactly how old your kiddo is but maybe getting letters from the other kid's or kid's parents could help? Not trying to make it sound like he's a disruption in class, but if you had other parents/kids from the classroom on your pro-IEP side maybe that would help? Just a suggestion. Don't really know what I'm talking about here though. :/ Tomorrow will be a better day!!!