PANDAS Packet for my child's new teachers

[Nearlydoc]

Resources for schools Gen. Resources to present to schools

Handout on teaching children with PANDAS

 

 

 

I am putting together a packet -- not to0 long, easy to read -- for my child's new teachers. They just don't seem to "get" PANDAS when I explain it. I would love suggestions of items that are teacher friendly, clear and concise. I am starting with a few of my own. I need the best easiest explanation for her condition. Has anyone used either of the PANDAS network letter for the school. Thanks.

Edited August 4, 2012 by Nearlydoc

[Aimee De Pooretere]

I used the pandas network letter (and had it signed by our doctor) . This year I am asking teachers to watch Charlie's 2 minute video: http://www.thepandaseffect.com/Video.html

Good luck . . . I wish it was easier to explain!

[philamom]

Aimee De P- I love your webpage & blog! Fantastic - thanks for sharing. I'm also guilty of titer chasing.

 

You can find great information on PANS/PANDAS at (IOCDF) www.ocfoundation.org/PANDAS

 

One of our doctor notes:

 

***** has a history of PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with Streptococcus). This is a post infectious auto-immune disorder that effects the basil ganglia of the brain and causes neuro-psychiatric and behavioral abnormalities. This is a medical condition, not a psychiatric disorder. Due to the history of this disorder....

Edited August 4, 2012 by philamom

[LNN]

This isn't Pandas specific but I like the format - it's essentially your child's resume of strengths, weaknesses and goals, with specifics for the teacher to focus on. http://www.pacer.org/parent/php/php-c160.pdf

 

Every year, I meet with my son's teacher and try to explain it all. They nod, they make sympathetic faces. But they don't get it. Then, months later, when a flare crops up, I have to repeat myself and they again nod, maybe a few things ring a bell this time. But the only ones who ever "get" it are the ones who have kids of their own who have issues.

 

I used to believe that I needed to educate them about Pandas/lyme so they could spot other kids who suddenly changed. But now I realize I have about 15 minutes to convey a message and before they leave the table, they need to know not so much about the disease but what they're supposed to do for my son. So now I focus on actions I want them to take and focus less on educating them.

 

This year, my son will have 3 teachers thru the day (5th grade). So I need to figure out how to sum up the diseases very quickly. They don't really need to understand the medical aspect. They only need to know that

1. some behaviors and learning issues are medically based

 

2. therefore, they need to alert me whenever they see behaviors that are different than his norm or learning issues that need home support. Their input is invaluable in helping me manage the disease.

 

3. I do not expect them to be an ERP therapist. I only need them to know how OCD, anxiety etc may show up and if they see certain signs, they should call me. We can work thru the details if/when necessary. If they have any concerns during the day and want someone to validate their concerns/observations, they can turn to the school psychologist, who has worked with my son for the past two years and is my ally.

 

4. They need to know that despite any academic/performance measures, my son is bright and I want them help him realize his potential. Specifically, he should not be pushed to do timed mathematics - he lacks the rapid recall abilities. But he should be expected to master the same math concepts as his peers - provided he has ample time. He may try to hide his shortcomings by letting others in a group project perform when he feels incompetent. But the teacher can use the project as a way to foster his project management and people skills. Specific skills he avoids in a group should be worked on one-on-one. He should not be graded on neatness or artistic ability. These are the kind of specifics I now focus on, rather than spending too much time on disease awareness.

 

Probably not the answer you were looking for, but just wanted to suggest you make sure the info tells the teacher what they're supposed to do about it. They want an action plan.

[philamom]

LLM- You are such a wonderful resource! Thank you for all your input.

[Nearlydoc]

Thanks everyone, I love the video, and even as a teacher, I needed a reminder that what will help your teacher more effectively teach your child is key.

[smartyjones]

I needed a reminder that what will help your teacher more effectively teach your child is key.

 

very key point to emphasis -- LLM, what would we do without you??!!

 

it's rather difficult to provide info without overwhelming. i did use the letter adapted from pandas network last year -- the conductor letter -- and i must say, i think it was the best letter i've ever written -- ha ha. i can pm to you if you like. and i provided a few other info sheets.

 

for us, in the beginning, the staff etc, were all extremely appreciative for the info and stunned they 'had never heard of this before' -- of course, i am sure they have run into pans kids, just didn't know it and gave it another label.

 

disclaim these next statements are negative and don't mean to be a downer but want to mention it in the spirit of helping awareness.

 

unfortately for us, ds was in a great state of remission at the time and when his behaviors surfaced, they believed them to just be an obnoxious, indulged kid with a neurotic mother -- even with 2 diagnosis letters of anxiety - NOS and PANDAS. i tried so hard to be proactive and it backfired in my face. in retrospect, i think some of the reason was i was there and active and they took me on to function as his aide, rather than calling in the personnel that should have been doing that. i was knowledgable in something they knew nothing about, so they had a hands off attitude, until they wanted to grab control and then had no idea and the wrong personnel to be involved.

 

the good news is that i think our experience is NOT the norm -- as even at that time, most here on the forum had much more positive experiences with schools.

 

 

we are now trying 'take 2' armed with professional help to get us to who we really need to be dealing with in the school system -- of SPED and school board. we'll see how it turns out.

 

 

good luck!!!

[MomWithOCDSon]

I'll just echo LLM.

 

DS is now a sophomore in high school, so we've had a few years to hone our approach with schools, teachers and administrators.

 

Your teachers/school want to know how to 1) help your child and 2) meet his needs in the way that is least disruptive to the rest of the class. Knowing that PANDAS can flare and recede is important, but beyond that, and asking for strep notification, the medical side of things is likely overkill for them, and you may see their eyes glaze over if you go into a lot of detail.

 

LLM's tips are awesome; I'll just add one more.

 

One of the most illustrative, helpful things we gave our DS's teachers were writing/drawing samples of "Healthy DS" versus "Exacerbation DS." The lightbulb seemed to literally go on for some of them when they saw his good, fully-legible math work at one period, as compared to the illegible scrawl for the same subject just a few months later. And I think it helped them know that this was not a kid who got "lazy" or "careless" overnight, or who had never mastered penmanship. The visual evidence was pretty irrefutable, and it helped them help us, too, since sometimes they would see the handwriting deterioration before we would see anything at home, and could alert us.

[Nearlydoc]

One of the most illustrative, helpful things we gave our DS's teachers were writing/drawing samples of "Healthy DS" versus "Exacerbation DS." The lightbulb seemed to literally go on for some of them when they saw his good, fully-legible math work at one period, as compared to the illegible scrawl for the same subject just a few months later. And I think it helped them know that this was not a kid who got "lazy" or "careless" overnight, or who had never mastered penmanship. The visual evidence was pretty irrefutable, and it helped them help us, too, since sometimes they would see the handwriting deterioration before we would see anything at home, and could alert us.

 

I like the idea of samples, but she has never had proficiency let alone mastery of handwriting. I am not sure her samples would make the point. But I do like that idea.

[MomWithOCDSon]

I like the idea of samples, but she has never had proficiency let alone mastery of handwriting. I am not sure her samples would make the point. But I do like that idea.

 

Picture drawing can work well, also. It doesn't have to be words or letters.

[ptcgirl]

I used the pandas network letter (and had it signed by our doctor) . This year I am asking teachers to watch Charlie's 2 minute video: http://www.thepandaseffect.com/Video.html

Good luck . . . I wish it was easier to explain!

 

Really think the video is great! Thanks for sharing.