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LLM -- remember advice to ds's teacher?

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LLM -- since you keep your advice to us catalogued and organized. . . do you remember advice you wrote about a change in speaking to your ds's teachers -- that they would notice how they spoke to him and how they felt about his actions better than discussing what/how you son is in beginning an exacerbation?


I remember the jist - which is, like always, priceless -- but I was hoping to find the post so I could steal your eloquence. do you at all remember maybe when it was that you were thinking that -- maybe I could search for it if I had a timeframe.



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you give me too much credit. I remember the discussion but no idea when it was - sometime this past '12-'13 school year.


The jist was, the teachers might be moderately interested in Pandas, but only for about 2 minutes. After that, they only want to know what it means to them, how they might need to adapt or accomodate, what does it look like?


I used to try to educate about OCD, all the different types, and I'd get strange looks, like maybe my son was crazy. I wanted to educate so they'd recognize it in other kids, since 1-2 kids out of 100 have OCD. But they didn't want to be schooled. Only the ones who had kids of their own with medical or anxiety-related issues asked for more info. Most just wanted the cliff notes on how to deal with my son in very practical terms.


In my epiphany, when one teacher said "how will I know he's in a flare and his 504 should kick in?" I finally explained how my DH and I know it. "You hear it" I said. "You hear the way you talk to him and you realize you're reprimanding a lot more than usual. You need to direct him more, need to intervene with peer conflicts more, he gets into more disagreements, does brainless things like have pencil wars with his classmate instead of doing his writing prompt. It's not that other boys don't do these things too. You'll just see more than what's normal for my son. More inattention, more social conflict, more anxiety, more neediness for reassurance and direction, more discipline - like someone's turned up the volume from 3 to 10. You'll reflect on the day and realize you said his name about 100 times and most of it under negative circumstances. So you "hear" a flare because you'll suddenly hear yourself saying his name all day long, realize that he played a large role in your day and it sucked up your energy. It will then dawn on you that this is not normal and that's how you'll know something's not right. That's when you need to send me an email so we can collaborate."


It worked better than any articles, history or schooling I could've given them. They needed a concrete tool and this worked. I got a few emails because of this and it was really helpful in alerting me that something medical was going on.


You must be getting ready for teacher meet and greets! So I'll toss in that what the teachers also liked was I prepared a 5x7 index card with "things to know about my son" for each teacher. I kept it small so it forced me to be concise. Giving them an essay is too overwhelming and confusing for them. It had bullet points with very practical teaching tips. * works best when seated near but not next to a friend * allow unlimited bathroom breaks/alert me if they become frequent * if test scores don't reflect what you think he knows, please re-test orally and give partial credit if he then answers correctly. * learns best orally and kinesthetically * has spatial learning challenges *


I briefly tell them about his medical history so they understand what he's been thru (telling them he had to travel 600 miles to be in the Georgetown PICU for dialysis always makes them startle and appreciate the severity of his illness). But only what I can re-tell in 2 min. and I've stopped preaching. Handling the medical side of the disease is my responsibility, not theirs. Maybe he's not listening because of OCD but they really only care that's he's not listening, not the reason why. So i want them to understand why not being different is so important to him, why he's so afraid to admit he doesn't know something, why mechanics of writing is difficult. But mostly, I just want them to know the practical steps they can take to help him learn - all in a 15-20 min conference.

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Good advice. I learned in our first IEP meeting for our son at 3 years old that in general, the schools/teachers don't really care about the medical side - just what they see in the classroom.


I have a similar approach to LLM. Because I don't want to dominate the conversation or teachers time at open house, I prepared a small package to give to her - this is what it includes:


A 1-page introduction letter. This letter outlines in about 3 sentences what PANDAS is, then goes into how it showed up in class last year and refers the new teacher to last year's teacher if they are curious about how it affected class time (always ask last year's teacher if she's willing to help). This also has a list of about 2-3 bullet items from the 504 that I feel are important for the coming year (frequent bathroom breaks, no sharing supplies, etc...) The only other "medical" items I include are things that will affect their attendance at school, ie - weekly behavior therapy appointments, absences for IVIG treatments.


It's less than 1 page - short and sweet - ending with a request to meet to discuss further once the school year has settled in.


Attached to it, I include a "resume" of my child. It's one page - but like LLM, all the info can fit on a 5x7 index card. It includes a picture of my child, and has these categories: At a Glance (what key words describe my child), Strengths, Weaknesses, Long Range Goals, Focus for X Grade, Things to Know (ie: describes his OCD as "Harvey")


And that's it - that's all I give them at that point. 2 sheets. I've done it for K and 1st grade for my daughter and her teachers loved it - the "resume" especially. This way we can keep the meet and greet short and sweet and allow the teacher to spread her attention to all the families there.


My son starts K this year. I've already put his package together. Since he's moving over from the public school EELP program to the Charter School regular K class, I also attached a copy of his last IEP and developmental assessments for the teacher. (Since we closed out his IEP and did a 504 for him for K - I'm not sure what previous info she will have access to.)


Later, at the meeting with the teachers, I have some additional information handy - but only if they ask for it. Some info I like to give is the "What is PANDAS?" page from Pandas Network.org and the School Nurse News article "PNDAS in the School Setting" (also can be found on Pandas Network.org. The IOCDF also has some GREAT articles including: "Recognizing OCD in School", "How OCD Affects Studies and Grades", and "The Not-So-Obvious Symptoms of OCD in School".


I will share those articles if the teachers ask for them, or if the conversation lends itself into that direction.


My son was in the EELP program for 3 years, and my daughter got a new K teacher mid way through her K year - so I've done this process for about 5 different teachers now - and we've always had great success and cooperation from them.


If you overwhelm them with too much info at once - you lose them. And while I'd love to educate every teacher to be able to spot it in other kids - it's not possible all at once.


You have an entire school year to educate them!! ;)

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Thank you for posting this; I am trying to compile something for my 8 yr old DD's teachers for the upcoming school year. It is SO HARD to come up with what to say; you want to give them enough information so that they will have some insight & help, but not so much that they shut down and stop reading...


This will help me "edit" and streamline what I write.

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