Need help on IEP...

[Buster]

Two years ago, we got an IEP for my daughter for speech and then extended the IEP under OHI for PANDAS when all #$@$@# broke loose in Feb 2008.

 

We're now back to the underlying conditions that my daughter has always had:

* mild dysgraphia -- poor penmanship, fine motor tremor (on long assignments)

* orthographic memory issues -- can't spell, can't recall math facts (must recompute them)

* social anxiety -- very pronounced and doesn't want to be different from others

 

This last one is a pain because it means she doesn't want to use accomodations (such as using an AlphaSmart to type) if others in the class aren't doing it too.

 

Another weird thing about her condition is that she can recognize misspelled words, but can't spell them (and often can't copy them). She writes phonetically, but reads by sight. It's like the two parts of her brain never quite got together.

 

We've gotten some accomodations through the school, but her teacher is now thinking she's just not putting in enough effort. He actually wrote in her report card that "she needs to put more time and energy into studying for tests." While that may seem an innocent comment, we see her each night struggling to do her homework and often in tears as she tries to produce written work. The physical writing is the struggle -- trying to get her thoughts, orientation of letters and the fine motor all to cooperate. Bottom line, it's not for a lack of trying. In reading essays they have to write, you can literally see the degradation of her handwriting after 4 sentences. She comes home exhausted from this.

 

We've tried to get the IEP to give her "multiple choice" or "fill in blank" or to reduce copying (like have the teacher hand her stuff that is typically copied from the board), but this has not been followed through although documented. The teacher wants her to go to the resource room to learn stuff she should have learned in 2nd and 3rd grade. This would make sense but her social anxiety is so severe that she literally breaks down in tears when pulled from the class.

 

I'm now in the "enough stress" moments and while this is soooo small an issue compared to last year and what other parents have been through, I'm hoping you might all have suggestions of what to do here. The key issue is producing material (i.e., the physical act of writing). She totally understands the concepts but seems to get confused about how things look. Any suggestions?

 

Buster

[bronxmom2]

Wow, Buster, you have described my son's issues exactly!

 

My son also has that weird disconnect between reading/writing.

 

I personally did not even seek an IEP or 504-- could not see anything working, given his complicated situation-- and opted to just pull him out of school altogether.

 

I am convinced that all of our children are "2E"-- twice exceptional-- gifted and with issues like what you describe.

 

There is another board that I read sometimes-- the Davidson gifted board-- I bet if you posted this on their 2e forum you might get some good suggestions.

http://giftedissues.davidsongifted.org/BB/

 

(If you don't want to post, I could post for you and let you know if they have any good ideas.)

 

The multiple choice idea is a good one-- my son also loves multiple choice and fill-in-the-blank-- it allows him to show what he knows without all that stress. I buy him lots of Brain Questy-type stuff-- knowledge cards and things like that-- and he's alarmingly good at trivial pursuit. Can you push them on that one?

 

Also can you find out what she "missed" in 2nd and 3rd grades and work with her on it at home, so she doesn't feel stigmatized when removed from the classroom.

 

? You could get those "What your third grader needs to know" books. (I use those.)

[poetmom]

Hi Buster,

I'm glad to hear your daughter has come so far. It seems to me if the social implications of being pulled out of class and singled out are the core issue but if you agree she could use the extra study, the simpler solution would be to bring in a tutor outside of school. Somewhere like Sylvan Learning might offer new companionship on a peer level (perception being she's not the only one) and it wouldn't occur as a singular experience in front of an audience of what it sounds like she views as "unequal" peers.

 

Sylvan's expensive I hear, but I'm sure there are others or even something more private.

Hope that helps.

Robin

[peglem]

This is just my gut reaction-I'll try to find something more helpful w/ a little time. The social anxiety really seems to be interfering with her getting the help she needs. The poor kid has been through so much already, and now, when you're finally seeing the light of day....its like cleaning up after a tornado, eh?

 

First of all, I understand limited equipment and what not, but if the other students had the opportunity to use the alphasmart as well, it would lose its stigma. I went to a seminar in Sept of '08, about integrating sped in the regular classroom, and really, it was all about giving all students access to the same supports the sped students had (because, really most of these things are helpful for all students).

 

I know there is a way for the resource teacher to integrate her instruction into the regular classroom- but again, that would single your daughter out.

Have you ever looked into Montessori schools? I think they individualize education, so that everyone is working on the same concepts differently.

 

As far as the writing issues-does she get OT? Using a slant board and wrist support, things like that can sometimes help, but a good OT would know what specifically might help.

Another thing that might help is to have her go ahead and do the handwritten assignments at school, but bring home written work so she can type it before turning it in.

Having a very understanding teacher is key to all this- if they think it is a bunch of hogwash and you're just babying her-they'll do the paperwork to make it look like they are complying, but won't help at all. The teacher's attitude and acceptance of differences (and ALL kids have them) in learning can go a long way in relieving anxiety for those who need extra or special help. By the same token-a teacher's attitude can make things a lot worse as well, if they expect that all kids will learn the same things in the same way. Anybody who has gone through the public education system knows there are certain teachers who somehow manage to destroy student's thirst for learning.

[thereishope]

Does she still have the pre-existing IEP in place? What evaluations has the school district done?

 

I'm also suprised she gets pulled from the classroom. That's suppose to be a last resort. There's a law in place for that.

[LNN]

Have you had an independent neuropscyh evaluation? We were headed that way but were advised to wait until after PANDAS was under control because the PANDAS itself would show up as all sorts of issues and we wouldn't be getting a true picture of what was PANDAS and what be be any underlying and longer term challenges. But since you're out of the woods, an evaluation might give you the support you need to push for accommodations - such as a limit on written assignments, the ability to do some work at home on a keyboard...

 

My son gets extra help for reading - he goes with 4 others for a half hour each day to a reading tutor, but since this is essentially 20% of the class, and other kids get pulled for a half hour of math, it isn't a stigma (at least not in 2nd grade). Then, another reading consultant comes into the classroom for certain times of the day and lurks in the background, almost serving as a teacher's assistant. She'll float around the room, helping the kids in her program (making sure they can read the directions or helping an ADHD kid to get back on task). In this way, none of the kids really know who's getting special help and who isn't. They just think she's there for everyone. It isn't the same as having one-on-one help, but if the anxiety is the biggest hurdle, then maybe it's an option, with a tutor at home if needed.

 

The academics can be learned in many ways. But protecting her self esteem, especially after all she's been through, is paramount. So I think the burden to creatively bring help into the classroom is on the school. Your daughter shouldn't be "punished" by being pulled out, if this is how she views it. It could trigger a silent meltdown about performance that would be far harder to repair than sloppy handwriting or bad spelling.

 

And for whatever it's worth - some of the issues you're still seeing may resolve. You've heard how it can take a year or more to heal. But if your gut tells you there are longer term issues at work, then a neuropsych eval would help you pinpoint areas that need accommodations and it would also reassure your daughter that she's bright but that parts of her brain aren't communicating properly - having a name for what's going wrong is often easier to handle than thinking "gee I'm dumb" or "I'm so different from everyone else."

 

I wish you nothing but good luck - battling the school was one of the worst of my PANDAS memories - still makes my blood boil.

 

Laura

[thereishope]

I think the "group sessions" in intervention is across the board . That's what they start with, then if they don't see the child is making enough progress then they start getting one on one. They're suppose to keep the child as much as part of the clasroom and in the classroom environment as possible.

 

I think things like reading recovery is handled different in our district as well. It's not considered a disability or disorder.

[Buster]

Have you had an independent neuropscyh evaluation?

 

Yes, she's had the "stealth dyslexia"/orthographic memory issues since 1st grade and we had extensive neuropsych consults (as well as the school running tests) all confirming what we already knew -- that there was a 2-3 year distance between her knowledge and her production. Her vocabulary is off the charts, but her spelling is worse than a 1st grader. Her reading comprehension is off the charts, but her punctuation is less than a 2nd grader. She has a great understanding of algebra but can't tell you 2x3 without calculating it. All individual tests came out fine, but problems showed up when combining individual tests (i.e., copying rather than reading) -- where fine motor, visual memory, and ordering all have to come together. When tests were combined she dropped like a stone to the 4th percentile. Again all of this may be PANDAS still. We do see enormous improvement in her handwriting, margins and memorization since IVIG.

 

The academics can be learned in many ways. But protecting her self esteem, especially after all she's been through, is paramount.

 

I thoroughly agree. She's actually a hard worker and really does want to get all the homework done, but would rather do her math schoolwork at home where no one judges her. The teacher is treating this as her not trying.

 

So I think the burden to creatively bring help into the classroom is on the school. Your daughter shouldn't be "punished" by being pulled out, if this is how she views it. It could trigger a silent meltdown about performance that would be far harder to repair than sloppy handwriting or bad spelling.

Totally agree and my biggest fear. I read so many stories of dyslexics who fall off the curve in 3rd grade -- and are never caught. Her dyslexia (spelling/writing) may be an underlying condition or attributable to PANDAS. We really just want her comfortable in school.

 

battling the school was one of the worst of my PANDAS memories - still makes my blood boil.

Mine too... especially since we already got the IEP, already talked about these issues and then we get the "she's not trying in class" bizarre comment on her report card -- and then a refusal from the teacher to meet to discuss without waiting 1 month for an IEP meeting. I really don't get why the teacher can't tell us what he means without waiting a month for a formal IEP meeting.

 

 

 

Buster

[dcmom]

Hi Buster,

 

I have been meaning to reply to you. Not sure if this will be helpful...

 

My dd Julia was hit with pandas at age 5 in the middle of Kindergarten. It was very hard to tell how it impacted her academically. I didn't see a big difference in her drawing or handwriting, so I thought everything was her "normal". She was not a really confident student, struggled a bit with writing letters backwards, really had a tough time remembering and writing numbers, could not remember days of the week in order no matter how much we tried, and was somewhat resistant to doing homework. She did fine (if ever so slightly behind on her standardized testing). She is young- ish for her grade- I just figured this was her.

 

Fast forward to literally the week after pex: she can recite the days of the week everytime, no problem, she can write her numbers 1-100+ no problem, she sits down by her choice and reads to my mom for an hour, she does 10 pages of her make up homework with NO help or coaching, and then she tests advanced in math. So in other words- these academic issues were not her, they were pandas. All of this info she did learn, somehow, but she just couldn't get it out I guess.

 

We haven't done an IEP, yet. Thinking about it due to so many absences. My dd also hates being pulled out for anything- which is not helpful in the anxiety dept.

 

So, I just wanted to give you the hope that within time as the pandas resolve, these issues may as well. I forget how old she is, but possibly you could just get them to really take it easy on her this year, and you can supplement yourselves or with a tutor in the summer. It has been easy (in a way) for us, since dd is so young.

 

All my best...

[sf_mom]

I can say similar with Corsa who is also in kindergarten and 5 1/2....... Although, I think with PEX you see a more immediate resolution to some of these issues. Corsa occasionally still writes backwards, his hand writing has improved and he is able to keep up with the class. He tends to be one of the more emotional kids 'cries easily' when frustrated. I am convinced as he gets better every thing else will resolve.

 

I honestly suspect its PANDAS but none of us will know until we are 2 to 3 years out from an episode. I like the summer tutor idea.

 

-Wendy

 

 

Hi Buster,

 

I have been meaning to reply to you. Not sure if this will be helpful...

 

My dd Julia was hit with pandas at age 5 in the middle of Kindergarten. It was very hard to tell how it impacted her academically. I didn't see a big difference in her drawing or handwriting, so I thought everything was her "normal". She was not a really confident student, struggled a bit with writing letters backwards, really had a tough time remembering and writing numbers, could not remember days of the week in order no matter how much we tried, and was somewhat resistant to doing homework. She did fine (if ever so slightly behind on her standardized testing). She is young- ish for her grade- I just figured this was her.

 

Fast forward to literally the week after pex: she can recite the days of the week everytime, no problem, she can write her numbers 1-100+ no problem, she sits down by her choice and reads to my mom for an hour, she does 10 pages of her make up homework with NO help or coaching, and then she tests advanced in math. So in other words- these academic issues were not her, they were pandas. All of this info she did learn, somehow, but she just couldn't get it out I guess.

 

We haven't done an IEP, yet. Thinking about it due to so many absences. My dd also hates being pulled out for anything- which is not helpful in the anxiety dept.

 

So, I just wanted to give you the hope that within time as the pandas resolve, these issues may as well. I forget how old she is, but possibly you could just get them to really take it easy on her this year, and you can supplement yourselves or with a tutor in the summer. It has been easy (in a way) for us, since dd is so young.

 

All my best...

[MomWithOCDSon]

HI Buster --

 

My son, too, is especially troubled by writing assignments, whether in the classroom or out. He had a fairly extensive 504 Plan through 6th grade, but this year we had to kick it up to the IEP level because his OCD/PANDAS became such a force.

 

He's always had horrible handwriting, and the penmanship lessons in the early years of school were pure torture for him. But that fine motor trouble didn't follow him to the keyboard, and he learned to type very quickly and very well.

 

So one of the first accommodations we arranged for was that he could type his assignments, rather than write them. Now, with the IEP, he's even permitted to use the voice-recognition software and microphone hooked up to his home computer. So written homework isn't nearly as much of a problem anymore.

 

Additionally, he can perform a quiz orally with his teacher; in other words, if a quiz is handed out that requires written answers in sentences about, say, a book they're reading for the class, our son will arrange with the teacher for a time in the next day or so to sit and respond to all the quiz questions orally, thereby satisfying the teacher that he's done the required reading and knows the material, but not forcing him endure the torture of writing.

 

For classroom notes, meanwhile, we're still working on that. He's permitted to get copies of notes from one of his classmates, and there's at least one teacher (science) who hands out printed note outlines for each study unit, and the kids just add to it as they need. I don't know about your daughter, but my son's memory is exceptional, so as long as the material is of interest to him, he can remember most of a given lesson without any notes at all. One of the school social workers had suggested an AlphaSmart for him for this note-taking purpose, but the IEP case worker and special ed teacher almost immediately dismissed it, commenting that it was a social "kiss of death," and none of the kids liked them.

 

Socially, he's always been a little on the fringe; luckily enough, for the most part, it doesn't seem to bother him much or often. I think it's different for girls, though; they seem to be much more focused on groups and belonging than boys of middle school age. My son doesn't like to be pulled out of a class, either, but he doesn't mind the regularly-scheduled resource period or the regularly-scheduled social work sessions. Maybe if your daughter could have everything scheduled, so that she reported to Resource or whatever on her own, rather than being pulled out noticably in front of her classmates? Or is it just that she misses a class once each week or so that calls attention to her, to her dismay?

 

I'd be interested in hearing how you ultimately work all this out. I know the schools can be a real mine-field, and I feel fortunate that we've had the truly caring advocacy we've received thus far, despite the teacher here or there who, maybe similar to your daughter's, seems to feel that all of the accommodations are more "excuses" than responses to the reality of the situation, and that our kids just aren't trying hard enough. Man, let them spend 24 hours in our shoes! THAT would cure THAT attitude, I think!

[Chemar]

Buster

 

I havent read the whole thread so not sure if this was mentioned but you may want to go with a 504 plan rather than just an IEP

 

the 504 covers the acedemic/learning issues as well as the emotional etc that comes with the OCD anxiety etc

 

a 504 is very individual in structure and you can include doctors letters etc when you go for the meeting to set it up

 

we found it far better for my son than the IEP he had in elementary. He got the 504 in middle school and carried it thru highschool and it was a big big help! With the 504 all teachers have to sign off on the accommodations (emotional and academic) and it become legally binding that they have to adhere to it

 

altho TS and PANDAS have differences, still you may find helpful info on the TSA website

http://www.tsa-usa.org/educ_advoc/educ_ed_strat_main.htm

[Buster]

http://www.tsa-usa.org/educ_advoc/educ_ed_strat_main.htm

 

Thank you Chemar. The link is excellent and almost all of it applies. We were able to get an OHI under IEP since she also has speech issues. When the speech issue completes we may switch to a 504. Best regards, Buster