School doesn't get Pandas

[MomWithOCDSon]

So, the only conclusion to draw is that these people are either completely incompetent or they have a hidden agenda. (Like drive you out of the school?)

You know, I think you're on to something, there. If Coco will just give up, pack up DD and head for another educational option, all on their own accord, then the school is relinquished of its responsibility, and all the personnel and financial costs that go along with that responsibility! Is that too cynical a view to take here?!?! Move over, Oliver Stone, have I got a conspiracy theory for YOU!

 

We actually had our grade school principal, when we went to meet with her for the third time regarding a particularly problematic teacher in dealing with DS's challenges, who informed us that "You know, the district has an open enrollment policy, and as it is becoming increasingly clear that you are not going to be happy with this school, perhaps you should consider one of the other two in the district"!! Translation: I wish you'd take your concerns and standards elsewhere because you're just a big old pain in my neck. Just pass the buck . . . heaven forbid you actually DEAL with the issues at hand and serve the child's best interests!!!

 

Boy, it just makes you want to dig in and fight like heck, doesn't it?!?! Only, in the situations we're all in, we have to mind our priorities carefully, and sometimes there just aren't enough resources to spare to take on another battle with a brick wall . . . a stupid brick wall . . . a stupid brick wall with plugged up ears and less common "sense than God gave a screwdriver!" (I borrowed that last one from a Sam Shepard play, but it just seems to fit the situation).

 

Wow, now I've had MY chance to vent, too. Thanks!

[Stephanie2]

Wow, coco. I don't know what to say! My oldest is going into kindergarten in the fall so I have no experience, but after reading your post I am pretty scared!!! :-0

 

Best of luck!

Stephanie

 

For about 4 months we have been in a battle of sorts with the school regarding my dd's (age 10) behavior and how best to effectively handle it. Since last summer when we received the diagnosis of Pandas I have been open and sharing with information, providing research docs, articles, doctor's comments, anecdotal advice from this forum (my favorite), etc. Our last team meeting a couple of weeks ago was the worst. Suffice it to say that almost all of them think we are full of baloney and WE deliberately made out daughter "worse" by doing this "IVIG thing", and "when are we doing another one?" A little background, she had high dose ivig In Feb at 1.5 and prior low dose monthly doses which went no where quickly. She had a rough road prior to the high dose and we realized she had an exacerbation at that time.

 

School believes that her behavior is "attention maintained" and they had put a plan in place where she should start at the bottom, being removed from the classroom, put into a resource room (10 x10) with no desk and no chair doing her assignments on the floor. She would have to "earn" her chair and desk back with providing good behavior for extended periods of time. PANDAS + MORE STRESS = DISASTER. And that's just what happened. We ended up pulling her from school and she has been home healing for the past 9 weeks and doing much, much better. We've had some "home tutoring services from the school personnel" for one hour and then 2 hours a day. She's now up to 3 hours a day. All is going really well and getting better, still blips but much better.

 

She is supposed to return to school next week for two hours to start with. Here's the kicker. Their plan is to treat her the same way as when we pulled her out in the first place. They continue to believe that any of her behavior is "attention maintained" and they will continue to use the time-out in a room by herself and she has to sit still for at least 2 minutes before being released. How impossible is that?! There is to be no "chit-chat" with anyone in the hallway as she goes from place to place."..really, no "Hi...I like your shirt, or how are are you's" at all. "People working with her are to keep themselves at arm's length in case of biting, hitting, etc" and "no affection, hugs, pat on the back" at all is to be done. No eye contact or corrective behavior is to be given when she misbehaves. In other words, let her spiral out of control, then lock her up, her stress excalates, the behavior escalates. Everyone loses. Especially my dd.

 

Yes, I explained again ANXIETY and OCD and the treasure trove of symptoms, even as she gets better these things can occur...here's the latest note from the school psych today:

 

I have shared your concerns regarding the behavior plan with the team. In a conversation that I had w/XX, we were thinking that it would be helpful if Dr. School Physician spoke (who knows jacksXXt about pandas) w/ your dd's doctor. As you & I discussed, the behavioral approaches that the school would take when working w/dd would differ based upon the root cause of the behaviors of concern. We would like the doctors to discuss the root cause of these behaviors as well as the extent to which dd has control over them and when she will be cured.

 

This team had already spoken to our doc two times in the past 2 months and they were told that "No one can say for sure, this is all somewhat trial and error, the behaviors result from a physical issue that she is being treated for and are not in her control, etc."

 

I guess I'm not sure what I'm asking you all...just needed to vent. Our plans are not to send her back in until we are sure she will be treated properly and not make maters worse for her. They think I am crazy with this pandas stuff. That's an understatement!!

[Santi]

For about 4 months we have been in a battle of sorts with the school regarding my dd's (age 10) behavior and how best to effectively handle it. Since last summer when we received the diagnosis of Pandas I have been open and sharing with information, providing research docs, articles, doctor's comments, anecdotal advice from this forum (my favorite), etc. Our last team meeting a couple of weeks ago was the worst. Suffice it to say that almost all of them think we are full of baloney and WE deliberately made out daughter "worse" by doing this "IVIG thing", and "when are we doing another one?" A little background, she had high dose ivig In Feb at 1.5 and prior low dose monthly doses which went no where quickly. She had a rough road prior to the high dose and we realized she had an exacerbation at that time.

 

School believes that her behavior is "attention maintained" and they had put a plan in place where she should start at the bottom, being removed from the classroom, put into a resource room (10 x10) with no desk and no chair doing her assignments on the floor. She would have to "earn" her chair and desk back with providing good behavior for extended periods of time. PANDAS + MORE STRESS = DISASTER. And that's just what happened. We ended up pulling her from school and she has been home healing for the past 9 weeks and doing much, much better. We've had some "home tutoring services from the school personnel" for one hour and then 2 hours a day. She's now up to 3 hours a day. All is going really well and getting better, still blips but much better.

 

She is supposed to return to school next week for two hours to start with. Here's the kicker. Their plan is to treat her the same way as when we pulled her out in the first place. They continue to believe that any of her behavior is "attention maintained" and they will continue to use the time-out in a room by herself and she has to sit still for at least 2 minutes before being released. How impossible is that?! There is to be no "chit-chat" with anyone in the hallway as she goes from place to place."..really, no "Hi...I like your shirt, or how are are you's" at all. "People working with her are to keep themselves at arm's length in case of biting, hitting, etc" and "no affection, hugs, pat on the back" at all is to be done. No eye contact or corrective behavior is to be given when she misbehaves. In other words, let her spiral out of control, then lock her up, her stress excalates, the behavior escalates. Everyone loses. Especially my dd.

 

Yes, I explained again ANXIETY and OCD and the treasure trove of symptoms, even as she gets better these things can occur...here's the latest note from the school psych today:

 

I have shared your concerns regarding the behavior plan with the team. In a conversation that I had w/XX, we were thinking that it would be helpful if Dr. School Physician spoke (who knows jacksXXt about pandas) w/ your dd's doctor. As you & I discussed, the behavioral approaches that the school would take when working w/dd would differ based upon the root cause of the behaviors of concern. We would like the doctors to discuss the root cause of these behaviors as well as the extent to which dd has control over them and when she will be cured.

 

This team had already spoken to our doc two times in the past 2 months and they were told that "No one can say for sure, this is all somewhat trial and error, the behaviors result from a physical issue that she is being treated for and are not in her control, etc."

 

I guess I'm not sure what I'm asking you all...just needed to vent. Our plans are not to send her back in until we are sure she will be treated properly and not make maters worse for her. They think I am crazy with this pandas stuff. That's an understatement!!

 

What the school is doing is a bunch of BS. How dare them isolate your child and make her reearn the table and chair. When my son started school, they painted a big square in front of his portable to sit in when he is not acting appropriately. I told the principal that "I forbid them to do this" and then I drove directly to our attorney. I never had to bring my attorney to an IEP but just having her on board changed the school's attitude to a more positive one. Good luck. Andrea

[coco]

less common "sense than God gave a screwdriver!" (I borrowed that last one from a Sam Shepard play, but it just seems to fit the situation).

Ok, speaking of common sense, how does this one grab you?? The "school" tutor came this afternoon. She has a bit of an "anal" streak to her right out of the shoot, but I take a deep breath and give it a chance. She talks about herself in the second person, "Oops, Mrs. Jones dropped her pencil" or "Mrs. Jones needs to take a drink of her water..." They two of them sit at this white pottery barn table in a room off the kitchen. I putz around, occasionally eavesdrop and otherwise leave them to work quietly. Well after the session today I walk in with my usual "how are things going" and see the white table is COVERED in pencil drawings, grafetti, scribbles. I say "what happened here???!" She answers, "dd would not stop when I told her to and she did it for 15 minutes. I almost called for you." I said why didn't you just take her pencil away and tell her the session is over?! She knows not to do this and we cannot have her think this is OK under any circumstances! She replies, "Without a behavior plan I can't do anything." I said, "Do you have a common sense plan?" She had no reply other than "I'm sorry I can not do more."

 

thud, thud, thud.....there goes my head on the wall again.

[Stephanie2]

OMG, it is "surrounded by morons week" in your world!! If you don't mind me asking, where on earth do you live???!! Is it a rotten school district? Underfunded?

 

Stephanie

 

less common "sense than God gave a screwdriver!" (I borrowed that last one from a Sam Shepard play, but it just seems to fit the situation).

Ok, speaking of common sense, how does this one grab you?? The "school" tutor came this afternoon. She has a bit of an "anal" streak to her right out of the shoot, but I take a deep breath and give it a chance. She talks about herself in the second person, "Oops, Mrs. Jones dropped her pencil" or "Mrs. Jones needs to take a drink of her water..." They two of them sit at this white pottery barn table in a room off the kitchen. I putz around, occasionally eavesdrop and otherwise leave them to work quietly. Well after the session today I walk in with my usual "how are things going" and see the white table is COVERED in pencil drawings, grafetti, scribbles. I say "what happened here???!" She answers, "dd would not stop when I told her to and she did it for 15 minutes. I almost called for you." I said why didn't you just take her pencil away and tell her the session is over?! She knows not to do this and we cannot have her think this is OK under any circumstances! She replies, "Without a behavior plan I can't do anything." I said, "Do you have a common sense plan?" She had no reply other than "I'm sorry I can not do more."

 

thud, thud, thud.....there goes my head on the wall again.

[airial95]

I'm sorry,but I haven't read anything but the initial post and am completely appalled that any school would treat a child that way. If you don't mind my asking, what school district is this? It seems very archaic. My biggest fear is for when my Pandas som starts school.

[parents4eyes]

x

Edited September 8, 2010 by parents4eyes

[coco]

Ironically we live in one of the weathiest states, CT, and counties in it, known for great education. In fact, part of our decision to select this location was because of the great schools and all the services they offered. The soured on us once pandas came into the picture, I think because it's not widely accepted in the medical community, no other cases like her, they don't know how to deal with it, or choose not to. We are as shocked as you all are.

[smartyjones]

All is going really well and getting better, still blips but much better.

 

She is supposed to return to school next week for two hours to start with

 

 

so sorry to hear this. i know it's so difficult when the school is troublesome. with only 5 more weeks of school and things going well at home, do you have to change it? can you just continue with what you've been doing?

 

good luck!

[kimballot]

Coco -

 

I may have missed something in the posts, but I am wondering if your daughter has an IEP or 504 plan in school. Also, has she every had a real live functional behavioral assessment from a fully qualified psychologist.... and has she ever had a positive behavioral support plan? (Please do not tell me they told you that putting her in a room with no chair was positive behavioral support!)

[poetmom]

Oh! It breaks my heart so hear you and your daughter are going through this. What a horrific response these fools have taken! No desk? No chair? Virtual solitary confinement? What is lunch? White rice thrown in the bottom of her "cage"?

 

While my own choice so far has been to keep my ds in public school as long as it's a positive environment for him, I homeschool my oldest child and would pull my PANDAS-bear out in a heartbeat if I thought it was better for him.

 

SO...if anyone here doesn't homeschool and is looking at the option, I'm happy to walk you down the right paths to help you get started with curriculum, support groups, etc.

[faith]

Coco -

 

I may have missed something in the posts, but I am wondering if your daughter has an IEP or 504 plan in school. Also, has she every had a real live functional behavioral assessment from a fully qualified psychologist.... and has she ever had a positive behavioral support plan? (Please do not tell me they told you that putting her in a room with no chair was positive behavioral support!)

 

coco,

... I was wondering the same as kimbalott.... Does your dd have any plan in place? it really makes alot of difference. however, I personally, don't feel it is in best interest to state anything re PANDAS for school purposes, its too broad and they don't understand all that it encompasses. So I think everyone should just stick to the individual symptoms, ie. ocd, tics, adhd, anxiety, etc. They cannot punish for those things, a plan will work around their problems. I can understand being admonished for poor behavior and having some consequences, but what you are describing is almost like they are trying to punish 'you'. . This may sound archaic, but I have found the best way to deal with my son's issues in school is to make as little waves as possible, just so they don't take their frustrations with 'me' out on my son. I know your situation is a little deeper than ours, but just for the other parents here, I feel that making it as simple as possible without too much explanation makes it much easier. I just make sure everything is 'confidential'. unfortunately, it helps to kind of play the game, if you know wht I mean.

 

Praying things get better you'll be able to sort this all out....

 

hugs

Faith

[MomWithOCDSon]

coco,

... I was wondering the same as kimbalott.... Does your dd have any plan in place? it really makes alot of difference. however, I personally, don't feel it is in best interest to state anything re PANDAS for school purposes, its too broad and they don't understand all that it encompasses. So I think everyone should just stick to the individual symptoms, ie. ocd, tics, adhd, anxiety, etc. They cannot punish for those things, a plan will work around their problems. I can understand being admonished for poor behavior and having some consequences, but what you are describing is almost like they are trying to punish 'you'. . This may sound archaic, but I have found the best way to deal with my son's issues in school is to make as little waves as possible, just so they don't take their frustrations with 'me' out on my son. I know your situation is a little deeper than ours, but just for the other parents here, I feel that making it as simple as possible without too much explanation makes it much easier. I just make sure everything is 'confidential'. unfortunately, it helps to kind of play the game, if you know wht I mean.

 

Praying things get better you'll be able to sort this all out....

 

hugs

Faith

In support of Faith's perspective, I guess I should have mentioned earlier that, because of our DS's pre-existing OCD diagnosis, our protections and positioning with our local school district is a little different than yours also, Coco. I have discussed PANDAS only with the handful of folks at the school who I knew were already predisposed toward supporting us and recognized us as a concerned, straight-forward family without any hidden agendas or axes to grind.

 

Meanwhile, his protections, IEP, behavior plan, etc. have all been afforded him by virtue of the OCD, a condition that is unfortunately far better understood by the academic world at large. Pretty much all of his behaviors they therefore attribute to the OCD, even the occasional meltdowns, attention deficit stuff and other quirks that many of us here more readily associate with and recognize as PANDAS hallmarks.

 

In the end, though, the goal is to get your child the best available academic environment, so does it matter what condition it is attributed to for the purposes of gaining those opportunities in this regard? I know you may not want a TS or OCD diagnosis tied to your PANDAS child necessarily, but maybe the "ends" will justify the "means." And with either a 504 or an IEP, should the condition fully remit at some point, you can have the plans struck, along with all the terminology that brought them into being in the first place.

 

Just another path to consider . . . .

[coco]

Yes, she has an IEP, and shockingly she has mastered most of her goals despite struggling with pandas. The issue regarding behavior comes down to their interpretation of what is pandas behavior and what is within her control. No one can answer that. How about we all try to HELP her constructively instead of punishing her and then seeing what is left to deal with afterwards? They think it's all in her control. We have worked with them in an open, fair way from the beginning in the hopes that it would all be handled with sensitivity and enlightenment. Their innuendo and skepticism and have destroyed that now.

 

Sadly, there is little hope on our part that after all our family has been through they really are able to accept what pandas does to her brain and how behaviors manifest as a result of it. They offer nothing up other than these draconian tactics. There is not even a "just suppose" she couldn't control most of them, how would she be treated approach. And if that snot-nose 23 year old non-mother behavioral therapist gives me the "look" of a blank stare as we, for the 100th time, explain this all yet again, I will loose it.

 

Everyone's posts have helped us enormously, to help us validate the circumstances and awaken us to the obvious. We are getting an attorney.

[Kay]

Coco.

I just want to say I feel your pain. We went through the school thing when my daughter was a junior and senior. Although we did not have a pandas dx at the time, something was wrong where a child who had consistently good grades, was not in trouble etc all of a sudden could not be in school.

 

They tried to offer what was available to them and it all sounded good until they tried to implement it and then they didn't either have the time or resources which again lead to more pressure to get things done because we were always behind by the time they figured out they could not do what they said they could do which led to more stress and just wasn't good for my daughter to have to take on their failures in their system.

 

We had the meetings with the "Teams" and I know about the "snot-nose 23 year old non-mother behavioral therapist" but ours was a "hip" man who drove a sporty car. I am sure on some levels he meshed well with the students but he really wasn't helpful to us and he was very frustrated by us too.

 

We had a guidance councilor who tried hard to guide us through the process and presented what was needed for us to the "team" but in the end it always came down to miscommunication and no resources. I am not trying to bash them just want you to know you need to be the squeaky wheel and get what you need. I eventually had to demand a meeting with the school principal who was on his way out, it was his last year and really could have cared what we did but he stuck it to us until his last breathe there but I did not let up. He was under the assumption that the system works for some and not for others, and his answer to me was when I asked "what we let her fall through the cracks" was a shoulder shrug!

 

I finally got what I wanted for her that year and then again in senior year but it was not without me being a person I do not want to be, I am honest and fair and expect no less from others, (I too thought being upfront and letting them know what was happening would help them help us) and when I don't see them respond to me in the asme way it turns me into the mad woman. So sometimes you have to be that mad woman, I am sorry you have to be in that position.

 

I also wanted to say, we are in the process of getting my daughter set up for college in the fall, with the dx of pandas we are looking for a single room to keep down possible illness that passes through the dorms and we need a kitchen. We eat very clean, she has food allergies and after talking with the people who service the food who thought they could take care of her fine, we have decided they cannot. Still at this level we have someone (the nutritionist) who wants to tell us what we must do, what test we should have done, and how to heal my daughter, she is the nutritionist at the school, not my daughters doctor and all I want is a place for her to heat up some food that isn't a microwave I did not ask for her help at fixing Pandas. So it never ends I am sorry to say. But I feel your pain. I hope you can have this resolved to your satisfaction and take no less, just because our children are ill does not mean they are not entitled to the same education and same treatment as others.

 

Kay