School?

[EmilyK]

How do you deal with disbelieving teachers? especially since my ds is one to valiently hold it together as much as possible at school and then be a wreck once he's out...

[AmySLP]

This is my oldest daughter! During her onset she was in pre-k and they thought I was crazy. She then continued to hold it together for k and 1st grade too! I have and old post on that. If you look under my name/ content you will see that. It must have been a good year or more ago-she's finallyndoing well now 3 years later!

 

I ended up sharing videos I took discretely with my daughters first grade teacher of what was happening at home when she truly took interest when some OCD behaviors and emotional lability and tics began to begin at school. Prior to that I was so overwhelmed with just trying to get my daughter well that I didn't care if they thought i was nuts! I did though,in all grades, and continue to keep a journal that I sent to school daily and I'd write each and every after school issue that insa in there. At some points I have to believe that teachers could not think I could possibly even come up with all that stuff!

 

I would video tape..it's very eye opening to others including doctors who may be disbelieving.

 

Amy

[MomWithOCDSon]

How do you deal with disbelieving teachers? especially since my ds is one to valiently hold it together as much as possible at school and then be a wreck once he's out...

 

So, if he's holding it together at school for the most part, is the problem that, once he's home, he's too much of a mess to complete homework or projects that are supposed to be turned in the next day, and that's impacting him academically? What is his primary behavior set? Does he exhibit OCD that translates into avoidance or perfectionism over school work? Is he anxious and/or oppositional? Is his condition negatively impacting his sleep so that getting moving and staying engaged throughout the school day is problematic? Does he have a 504 Plan or an IEP?

 

With teachers, what's worked best for us has been to focus on and address the behavior set that they find most impactful in the classroom setting. Unfortunately, at the present time, anyway, it's a whole lot easier to find professionally-written articles on things like "Obsessive Homework" and "Contamination OCD," for instance, than it is "PANDAs Behaviors and Your Students." Plus, the PANDAS behavior set can be so broad and varietal, I think sometimes we run the risk of having unfamiliar people (like teachers) think we're just throwing the "kitchen sink" into our description and making excuses for our children, rather than actively trying to close the gap between how the issues manifest at school, and what's legitimately behind them that we can work together toward solutions.

 

In the end, we've identified PANDAS and asked the school nurses to work with us in notification when they become aware of strep in the schools, but we've focussed less on the teachers "getting" PANDAS as an illness and more on them understanding, accomodating and working with us toward solutions when it comes to the behavior set, which in our case has been predominantly anxiety/OCD. I know we've been very fortunate with our district and the teachers (generally) that our DS has been assigned, but thus far, it's worked pretty well.

 

Good luck!

[AmySLP]

#1   AmySLP 

 

HERE was my post from some time ago but I had many replies then. I don't know how to post the link, but I found in under my profile/ posts.

 

Group:Members

Posts:335

Joined:23-February 09

Location:Binghamton, NY

Posted 15 June 2010 - 07:05 AM

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later.

 

At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon.

 

Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics)

 

Thanks for your input,

Amy

[LNN]

 

With teachers, what's worked best for us has been to focus on and address the behavior set that they find most impactful in the classroom setting. Unfortunately, at the present time, anyway, it's a whole lot easier to find professionally-written articles on things like "Obsessive Homework" and "Contamination OCD," for instance, than it is "PANDAs Behaviors and Your Students." Plus, the PANDAS behavior set can be so broad and varietal, I think sometimes we run the risk of having unfamiliar people (like teachers) think we're just throwing the "kitchen sink" into our description and making excuses for our children, rather than actively trying to close the gap between how the issues manifest at school, and what's legitimately behind them that we can work together toward solutions.

 

In the end, we've identified PANDAS and asked the school nurses to work with us in notification when they become aware of strep in the schools, but we've focussed less on the teachers "getting" PANDAS as an illness and more on them understanding, accomodating and working with us toward solutions when it comes to the behavior set, which in our case has been predominantly anxiety/OCD. I know we've been very fortunate with our district and the teachers (generally) that our DS has been assigned, but thus far, it's worked pretty well.

 

I've found this is absolutely true in our town as well. Teachers may want to be sympathetic to what you're going thru at home, but in the back of their minds, they're thinking "what do they want me to do about it?" or "how does this effect my class and are they telling me I need to change something specifically or are they just venting?"

 

When we've addressed specifics, we've gotten a lot more buy-in. So start with an interview - ask the teacher what behaviors they see as a concern (don't bring Pandas up immediately). Then a quick explanation of Pandas and how it will make behaviors very fluid over the school year. Then spend most time helping the teacher develop solutions. They'lll ask for more info on Pandas when they're ready for it. The first concern is helping the teacher and student navigate the day in the best way possible so learning can happen.

 

So for frequent bathroom trips, we developed a ticket system. DS started each day with xx tickets and he had to learn to ration those tickets and spread them thru the day. It wasn't a stingy amount - maybe 5 or 10. But a set amount so he couldn't return from a bathroom brake and immediately turn around to go again. For ADHD, DS has a 504 that allows gum chewing and holding a manipulative, like a squish ball. For projects requiring fine motor skills, he's allowed to use clip art instead of drawing things or if the main goal of the project is to express an idea, I'll do the cutting and pasting since he sucks at that. If impulse control is an issue, I tell the teacher to sit DS with a group of well behaved girls (which DS secretly likes because it's just too much to ask him to resist the exuberance of his male friends and he ends up misbehaving despite sincere intentions not to). There are certain kids DS should not be seated next to or paired with.

 

So very tangible, specific tools to help are more useful and better embraced than generalities or details about home life or the science of Pandas. If you know certain things trigger anxiety, talk to the teacher. Ask that the child be told 5 min before a fire drill or be encouraged to wear discrete ear plugs at a loud assembly. If a child has tics, ask the teacher to send him on lots of errands out of the class - please bring this envelope to the main office...- to give time for tics to burst out without lots of eyes on him. Never ask a ticcer to do work that requires their hands on a community table if that means the whole table will shake and jerk. Instead, ask the child to complete that quiet reading assignment at a separate desk. Or pull the child aside and tell him that for this 30 min writing assignment, he can jot down an outline and then dictate the full sentences to the parent at night (assuming the goal is to develop and write about an idea, not to develop penmanship). If the teacher embraces these things, you'll end up not caring so much about whether they "get" Pandas.

 

Nancy - you gave me an idea - "if" an article "Pandas Behaviors and Your Student" were to be penned by a formal organization or be published in a OT or special ed publication, what points would you want it to include? We do after all have members who've been known to author "reputable" documents in the past and perhaps we could contribute ideas to a similar article that could be ready for a fall publication when school starts back up...

[MomWithOCDSon]

Nancy - you gave me an idea - "if" an article "Pandas Behaviors and Your Student" were to be penned by a formal organization or be published in a OT or special ed publication, what points would you want it to include? We do after all have members who've been known to author "reputable" documents in the past and perhaps we could contribute ideas to a similar article that could be ready for a fall publication when school starts back up...

 

Oohhh . . . is there enough paper on the planet to encompass all of that?!?! More seriously, though, I think we might want to range it by age a bit, also, since certain interventions work best for certain age groups, and behaviors can shift, also, as kids get older and more self-conscious about how they're perceived by both adults and peers (generally, more introverted, from what I've seen). My fear is that teachers are frequently wary of "too much information" pertaining to a single student, so I wouldn't want to bomb them with a paper so long they'd have a tendency to blow it off, rather than find it helpful. Maybe we could get a start with something like:

 

All Ages

 

1. Handwriting deterioration -- student may experience a sudden deterioration in the legibility of writing, decreased ability in all art and/or fine motor skills as a result of PANDAS. Interventions might include permitting scribing by a parent or teacher, utilizing a keyboard instead handwritten papers or assessments, or oral/verbal assessments and projects in place of written ones. (My DS actually has a written accommodation that exempts him from having to hand-color projects or assignments! He finds it very challenging to hold a crayon, colored pencil or marker for the extended period required to complete some of the ridiculous "color this" assignments -- even in high school, believe it or not, and he has a hard time seeing the point in it when he can program perfectly beautiful colors and/or graphics on the computer.) Especially in higher grades, teachers sometimes assign art-oriented or "make it look nice" projects because, for the typical student, it's a nice break from the rigors of the more meaningful, intellectual assignments. But for kids for whom writing and/or drawing requires extra effort, these "easy" assignments ironically become the most challenging.

 

2. Emotional lability -- student may display an age-inappropriate response to frustrating events or tasks, or may appear "on top of the world" one moment and in the depths of despair the next. Interventions might include a neutral, "cooling off" space away from the chaos of the classroom or a quite, individual activity that the child finds enjoyable so that he can regroup/refocus and then rejoin the rest of the class

 

3. Deterioration in mathematical speed -- which mathematical concepts are still relatively readily grasped by PANDAs students, the speed of the processing or the production of mathematical proofs may suffer, prohibiting the student from constructively participating in flashcard drills, timed assessments, etc., and then potentially leading to an age-inappropriate response such as identified in #2. Interventions to consider would include exempting the student from such drills, granting additional time for assessments, and/or reducing assessments and homework assignments for quantity, not quality (i.e., the student should have enough problems in variety and number to demonstrate a grasp of the concepts, but not so many that he cannot complete the assignment within a reasonable time frame).

 

4. Problems with punctuality -- the student may have trouble arriving to school or class on time, making the transition from one class to another, making trips to a locker or cubby for appropriate materials for the next class/activity, etc., generally due to obsessive concerns with doing things "just right," organization (or lack thereof), bathroom breaks, etc. For an appropriate intervention, the student should be excused for all tardies within a reasonable time frame, and additional "breaks" should be built into the student's schedule whenever possible.

 

5. Additional potty breaks -- the PANDAS student may require additional bathroom breaks, both scheduled and unscheduled, due to an increased urinary frequency or contamination concerns or both. Breaks should be granted, though the teacher should work with the parent and/or the child's therapist in arriving at a "reasonable" response to any obessive behaviors in this regard as permitting such breaks on an unfettered basis could further contribute to the student's obsessive behavior in this regard.

 

I'm sure you know, I could go on and on! Those would sort of be my Top 5 with respect to our own experiences. I'm sure you have a magnificent list of your own!

 

Maybe if it were formatted in sort of a chart format, with "short-hand" for the interventions and explanations so it didn't look too intimidating? If the likely behaviors were featured on the left-hand side, and all the teacher had to do was look up a given behavior (alphabetically?), and then run her finger over to the column featuring the "Suggested Intervention"? Maybe that would work?

Edited May 31, 2012 by MomWithOCDSon

[Tracie]

This is why I homeschool.. I didnt need to tell anyone ANYTHING about my dd

no eye rolling,no "oh ok I guess we will let you know if there is strep in the class"

ect ect..

and the best part about it is my dd was only sick 1 time ALL YEAR!!! so happy about that

because that has helped with her healing of PANDAS..

I am going to homeschool her one more year and this year thank goodness it is only second grade.. LOL.. and get her back into sports

and that way when she does get sick she can still do her school work and NOT get behind in school again!

But if you cant homeschool get a 504 plan through the school I even have a 504 plan with the homeschool that we do

as a just in case..

hang in there

Tracie

[EmilyK]

How do you deal with disbelieving teachers? especially since my ds is one to valiently hold it together as much as possible at school and then be a wreck once he's out...

 

So, if he's holding it together at school for the most part, is the problem that, once he's home, he's too much of a mess to complete homework or projects that are supposed to be turned in the next day, and that's impacting him academically? What is his primary behavior set? Does he exhibit OCD that translates into avoidance or perfectionism over school work? Is he anxious and/or oppositional? Is his condition negatively impacting his sleep so that getting moving and staying engaged throughout the school day is problematic? Does he have a 504 Plan or an IEP?

 

 

Good luck!

Yes - too much of a mess to complete homework, or unfinished classwork that also comes home. Work with the therapist has helped somewhat. OCD - just right and perfectionist like crazy! Yesterday, he started to get frantic in the car because I took a route with an "ugly turn" which was giving him "a very bad day" as he put it. When he melts he rages sometimes. He's too anxious to sleep and sometimes to eat. Pre-penicillin, he was refusing to eat convinced he'd throwup - even his favorite foods and things like birthday cake. That's improved with penicillin. He's been on penicillin since early April but we just learned that he's still strep positive. He has a cough and sniffling that come and go and appear not to be mucus-induced, so I suspect that is a tic. Not sure... I requested a 504 meeting just a few days ago.

 

I struggle to get them to understand the distractibility and reluctance to do math and writing - that it's not just oppositional or lazy. He does have an intervention with the OT. They do make modifications, but sometimes their mini intervention plans to help him attend better only make him more anxious as he's certain the world is staring at him because he has a plan.

 

Thanks for the ideas!

Emily

[EmilyK]

Nancy - you gave me an idea - "if" an article "Pandas Behaviors and Your Student" were to be penned by a formal organization or be published in a OT or special ed publication, what points would you want it to include? We do after all have members who've been known to author "reputable" documents in the past and perhaps we could contribute ideas to a similar article that could be ready for a fall publication when school starts back up...

 

Oohhh . . . is there enough paper on the planet to encompass all of that?!?! More seriously, though, I think we might want to range it by age a bit, also, since certain interventions work best for certain age groups, and behaviors can shift, also, as kids get older and more self-conscious about how they're perceived by both adults and peers (generally, more introverted, from what I've seen). My fear is that teachers are frequently wary of "too much information" pertaining to a single student, so I wouldn't want to bomb them with a paper so long they'd have a tendency to blow it off, rather than find it helpful. Maybe we could get a start with something like:

 

All Ages

 

1. Handwriting deterioration -- student may experience a sudden deterioration in the legibility of writing, decreased ability in all art and/or fine motor skills as a result of PANDAS. Interventions might include permitting scribing by a parent or teacher, utilizing a keyboard instead handwritten papers or assessments, or oral/verbal assessments and projects in place of written ones. (My DS actually has a written accommodation that exempts him from having to hand-color projects or assignments! He finds it very challenging to hold a crayon, colored pencil or marker for the extended period required to complete some of the ridiculous "color this" assignments -- even in high school, believe it or not, and he has a hard time seeing the point in it when he can program perfectly beautiful colors and/or graphics on the computer.) Especially in higher grades, teachers sometimes assign art-oriented or "make it look nice" projects because, for the typical student, it's a nice break from the rigors of the more meaningful, intellectual assignments. But for kids for whom writing and/or drawing requires extra effort, these "easy" assignments ironically become the most challenging.

 

2. Emotional lability -- student may display an age-inappropriate response to frustrating events or tasks, or may appear "on top of the world" one moment and in the depths of despair the next. Interventions might include a neutral, "cooling off" space away from the chaos of the classroom or a quite, individual activity that the child finds enjoyable so that he can regroup/refocus and then rejoin the rest of the class

 

3. Deterioration in mathematical speed -- which mathematical concepts are still relatively readily grasped by PANDAs students, the speed of the processing or the production of mathematical proofs may suffer, prohibiting the student from constructively participating in flashcard drills, timed assessments, etc., and then potentially leading to an age-inappropriate response such as identified in #2. Interventions to consider would include exempting the student from such drills, granting additional time for assessments, and/or reducing assessments and homework assignments for quantity, not quality (i.e., the student should have enough problems in variety and number to demonstrate a grasp of the concepts, but not so many that he cannot complete the assignment within a reasonable time frame).

 

4. Problems with punctuality -- the student may have trouble arriving to school or class on time, making the transition from one class to another, making trips to a locker or cubby for appropriate materials for the next class/activity, etc., generally due to obsessive concerns with doing things "just right," organization (or lack thereof), bathroom breaks, etc. For an appropriate intervention, the student should be excused for all tardies within a reasonable time frame, and additional "breaks" should be built into the student's schedule whenever possible.

 

5. Additional potty breaks -- the PANDAS student may require additional bathroom breaks, both scheduled and unscheduled, due to an increased urinary frequency or contamination concerns or both. Breaks should be granted, though the teacher should work with the parent and/or the child's therapist in arriving at a "reasonable" response to any obessive behaviors in this regard as permitting such breaks on an unfettered basis could further contribute to the student's obsessive behavior in this regard.

 

I'm sure you know, I could go on and on! Those would sort of be my Top 5 with respect to our own experiences. I'm sure you have a magnificent list of your own!

 

Maybe if it were formatted in sort of a chart format, with "short-hand" for the interventions and explanations so it didn't look too intimidating? If the likely behaviors were featured on the left-hand side, and all the teacher had to do was look up a given behavior (alphabetically?), and then run her finger over to the column featuring the "Suggested Intervention"? Maybe that would work?

 

This sounds fabulous

[EmilyK]

This is my oldest daughter! During her onset she was in pre-k and they thought I was crazy. She then continued to hold it together for k and 1st grade too! I have and old post on that. If you look under my name/ content you will see that. It must have been a good year or more ago-she's finallyndoing well now 3 years later!

 

I ended up sharing videos I took discretely with my daughters first grade teacher of what was happening at home when she truly took interest when some OCD behaviors and emotional lability and tics began to begin at school. Prior to that I was so overwhelmed with just trying to get my daughter well that I didn't care if they thought i was nuts! I did though,in all grades, and continue to keep a journal that I sent to school daily and I'd write each and every after school issue that insa in there. At some points I have to believe that teachers could not think I could possibly even come up with all that stuff!

 

I would video tape..it's very eye opening to others including doctors who may be disbelieving.

 

Amy

My friend suggested that too. School year is almost done, so I may just save that idea for now. The school nurse and director are excellent at least. Thanks for posting your earlier thread

Emily

[MomWithOCDSon]

IOCDF - OCD at School

Yes - too much of a mess to complete homework, or unfinished classwork that also comes home. Work with the therapist has helped somewhat. OCD - just right and perfectionist like crazy! Yesterday, he started to get frantic in the car because I took a route with an "ugly turn" which was giving him "a very bad day" as he put it. When he melts he rages sometimes. He's too anxious to sleep and sometimes to eat. Pre-penicillin, he was refusing to eat convinced he'd throwup - even his favorite foods and things like birthday cake. That's improved with penicillin. He's been on penicillin since early April but we just learned that he's still strep positive. He has a cough and sniffling that come and go and appear not to be mucus-induced, so I suspect that is a tic. Not sure... I requested a 504 meeting just a few days ago.

 

I struggle to get them to understand the distractibility and reluctance to do math and writing - that it's not just oppositional or lazy. He does have an intervention with the OT. They do make modifications, but sometimes their mini intervention plans to help him attend better only make him more anxious as he's certain the world is staring at him because he has a plan.

 

Thanks for the ideas!

Emily

 

Emily --

 

Sounds like you're on the right road, but I also know what you mean about the school/teachers and how you fear the modifications themselves might be causing him additional stress for him. My DS has been through the same stuff, and it takes a while to settle out and for everyone to find a comfortable groove with it. In addition to the 504, you might need to work individually with each teacher(s) a bit . . . let them know that you and your family are dedicated to making school work for everyone, not just your DS, and that while you want his needs met, you know that it can't be at the expense of the rest of the class, etc., etc. A little soft-soaping never hurt, in other words, and may get them to open up their ears a little and hear you better!

 

I have found some really good, short papers on various topics (like homework, perfectionism, etc.) on these web sites and supplied them to teachers. On this one, the paper regarding "What the Heck is Obsessive Slowness" very helpful in explaining to the school why my DS needed the specific accommodation "Work shall be modified for quantity, not quality."

 

Expert Perspectives

 

IOCDF - OCD at School

 

OCD at School

 

Not-Obvious Signs of OCD at School

 

There's also a very good, new book out that's intended for school personnel, but I think it's a great resource for parents, especially if you're preparing for a 504 or IEP meeting and want/need some guidance or ideas as to accommodations that are both appropriate and reasonable. I actually gave a copy to our school and kept one for myself!

 

Amazon - Book - OCD for School Personnel

 

Hope these help a bit. Feel free to PM me, also, if there's anything more specific you'd like.

[dcmom]

Hi all- I just wanted to add an additional thought

 

First, let me preface it by saying that I COMPLETELY agree with all of the above info. However, in addition I like to keep in mind that the ultimate goal for our pandas children is to be able to live life and attend school with no accommodations. These goals can be a combination of short and long term goals, depending on each situation- but I do think it is important. I think the accommodations should be approached with the understanding (of both parent and child- not necessarily school) that they are a temporary measure, until medical treatment, therapy, and hard work, make them unnecessary.

 

Unfortunately, sometimes our kids have to work harder But, in reality everyone has their own cross to bear...

[EmilyK]

These are great!