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preparing for new school

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we're preparing ( or at least trying) for ds7 to go to a new school, 2nd grade. he had 'sudden onset' at age 4.5 in preschool with severe school phobia. kindergarten was touch and go, first semester very good. 2nd, the teacher raised the bar, he was falling short, she became frustrated. he never ate lunch at school, never used bathroom at school, i picked him up early (~1 hr) all year, no writing - and refusal to do activities that would result in writing, much non participating in group activities. we did homeschooling for 1st grade b/c trying to sell out house was MUCH longer than we had anticipated.


now, i really don't know how he'll do. he is much healhier than he was last year. much of what i see as troublesome is in relationship with older sibling. i do catch many things - not so much behavioral but with the way ds thinks, esp with schoolwork, that aren't really troublesome but could be so in a school environment b/ci t is different from the norm. 2 yrs ago, ds was tested by local childfind but doesn't qualify for anything b/c is on par academically. it really is a case that we need to see how things progress in the class environment to see how he is doing and what he would need.


they say they know pandas b/c there is another child there with the diagnosis. however, from my conversations, the VPrinc doesn't really know pandas. guidance counselor has been on vaca, she may know more. vice-princ was talking 'consequences' when we talked about behvavior. obviously, consequences are often necessary for 7 yr old boys, and ds is not an exception but, the issues i'm concerned about are not ones to be dealt with or will even have success with consequences.


so, any advice on the fine line of having the school prepared without dredging up all the old examples? i have the conductor letter from pandas network,(thanks vickie!) which very much describes ds. i have the OT links (thanks trudy and jan!). we are working with a private tutor who may be able to provide help into insights on ds's 'different' thinking but not into demeanor, etc in a classroom environment.


thanks for sharing any thoughts, good tales or bad tales!

Edited by smartyjones

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When I first discovered Pandas, I asked for a 504 meeting, prepared a powerpoint presentation and expected everyone in the room to go "ahh - got it. What can we do to help?" Wrong! The early school years are spent screening lots of kids and fitting them into classifications and doing lots of CYA for state legal requirements. I was sadly disappointed but it was more about CYA than about helping my particular child. Now, this is due partly to the personality of the school administrators. So it's thankfully not true for everyone. We only got the 504 (after a letter from Dr L) at the end of 2nd grade when he was "graduating" from that school and that principal wouldn't have to deal with us.


When my son started a new school for 3rd grade (same school system) the principal there was much more concerned about individual needs. I started slow (at this time, we found lyme as well and I kept quiet about that - didn't need them thinking I was a nut right off the bat). I showed them examples that were teacher-oriented. Handwriting samples in and out of exacerbation, math samples in and out of exacerbation, spelling..things that spoke their language. I also asked them to do an OCD example - I had them rub one eyebrow in the opposite direction that the hair grows. I told them to not touch it for 5 minutes. I asked them to recognize how uncomfortable and distracting it was and told them this is what my son would experience throughout the day as OCD or anxiety or ADD kicked in. Then I shut up and let them talk. Not every idea they came up with was appropriate, but it got them engaged. I tried not to be the expert and not to make them understand behaviors - before getting to know him, it would've sounded like I was making excuses.


Over the year, there were times they didn't get it. But they were at least part of the team. I wasn't a nut. You need to ask yourself what you need from them. They may never totally "get" your son or the disease. You just need them to be willing to communicate with you and make accommodations in a fluid manner. They need to feel they can help, not be on the opposing side. My personal opinion - spoon feed them. A brief description of the issues, some examples that teachers can relate to, and allow them to make suggestions - even if you feel they aren't spot-on. Ask for a monthly conference or phone call. On small discipline issues, nod and agree, then quietly do what you feel is best. On major ones, give lots of motrin (our Pandas doc signed a form allowing DS to take motrin at mid-day from the school nurse on my direction) and stand your ground on the things that will be remembered in the long run. Start out as a team player and pick your battles.


Honey works better than vinegar and establishing yourself as a credible, balanced mom in the beginning is important. So start with only a brief overview and try to keep conversations centered on the teacher's concerns, not the whole ball of wax. The disease is too complex to for that, especially early on in the school year.

Edited by LLM

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My son continues to do well,knock on wood. However, when he entered kindergarten he was still early on in recovery and we had no idea what to expect. I had a meeting with his teacher prior to the school year and it really eased my fears as I learned she had a grandson with ASD and she could relate to some of the symptoms my son had. I did cite some examples that may have occurred at school and told her if she sees any questionable behavior, to just be safe and tell me.The meeting not only helped me, but I think it made the teacher feel more confortable.


As for the rest of the school staff, the only other person I told was the principal so I can be notified of strep in the class room. Well, his SLP was also aware of it since it is on his IEP for speech.


My son does have an IEP for speech and at his last meeting, I provided the OT article. I actually printed it off and burned it on a cd for them. I thought a paper copy in a binder would be looked at mor than a link. When I handed it to them, they instantly started fingering through the papers. Also, by printing it off, it will sit on their desk as a reminder they have it, need to look at it.

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I echo a lot of what Laura has said above, as many of those same techniques have worked for us.


The writing samples have been especially powerful for them; I guess a picture is worth 1,000 words.


I have to say, beyond giving them a fairly basic PANDAS hand-out and asking that I be contacted in the event they are aware of a case of strep that I might otherwise not be notified of (although, as time goes on, I'm usually the one who notifies them that they must have strep somewhere aboard, as DS is the proverbial canary in the coal mine on that front and will ramp up a day or two before anyone in the vicinity actually "comes down" with strep), I tend these days to focus more on the primary behavior set (which in his case, is OCD). There're lots of materials out there nowadays, thankfully, for presenting OCD to educators, dealing with OCD in a classroom setting, etc. And there're even materials that explain how some other sorts of behaviors that they might see and might misinterpret as something else (like ADHD) are actually based in the same anxiety behind the OCD. Basically, this last year, I was able to, in an introductory meeting with the teaching team, hand them a total of about 5 brief items (one of which was a list of web site links and my email address should any among them have greater curiosity or want to reach me directly at any point).


When you say you see learning differences and that your DS has been tested but didn't qualify for any services because he was on par academically, what sort of testing was done? As you probably already know, lots of times with bright kids who have learning or processing differences (in or out of exacerbation), their verbal and spatial IQ's will show a discrepancy; it was the gulf in this discrepancy for our DS that helped him qualify for his current IEP even though, admittedly, there are times during the year in which he doesn't need those services to their full extent.


But the 504 was granted several years previous, in third grade, not because DS's academics or even learning indicated a need, but because his anxiety was so evident to everyone. They actually approached us about it, rather than the other way around! Truth is, the state academic testing for Every Child Left Behind (oops! Is my bias showing?!?! :P ) begins here in third grade, and it was in the school's best interest to grant DS a 504 so that he could be granted extra time for the testing. He's smart, but not always fast, and they knew that. Their scores would suffer if he wasn't given ample opportunity to demonstrate what he can do.

Edited by MomWithOCDSon

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