School doesn't get Pandas

[coco]

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!!

[mama2alex]

I'm so sorry you're going through this with the school! I can relate as we've spent all year just trying to get a 504 meeting. They wouldn't come out and say it, but it was clear to me that they didn't "buy it." They were approaching our son as a willful, defiant, possibly spoiled kid who was "making bad choices" (their phrase - heard it about a thousand times!). I won't go into our story too much here, but PM me if you want to chat. Suffice it to say, I understand your anger and frustration. It's just ridiculous and I pray the work we are all doing to publicize this, get research going, educate local doctors and schools, etc will someday mean that no child with PANDAS is treated this way. It's just wrong.

 

A couple of things that have helped our situation:

1. At some point early on, I put my husband in charge of communication. He's a cooler head, a great negotiator, patient beyond belief, and I had heard that the principal interacted differently (more responsive and cooperative) with dads in general. Don't know if this is an option for you, but I think it helped us.

2. My husband wrote many, many VERY detailed emails and eventually escalated things to the superintendant. In his second emai lto the superintendant, he mentioned the word "attorney" and things started happening very quickly.

3. We are looking into other school options, including private and a nearby charter school. My son is currently refusing to go to school at all. I think things just got so bad for him that he can't take it any more, so we may never get him back there. We were looking at other schools before, but now we are really focused on it.

 

You may have done all these things already, but just wanted to mention them.

 

Hugs,

Jennifer

 

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!!

[JAG10]

"Attorney" works or "parent advocate"

You need to ask for a copy of the Procedural Safeguards and all the phone numbers for complaints, grievances, parent advocate associations-free of charge, are all in there and they know it.

 

Parents are in the driver's seat, they just don't always know it.

[peglem]

I NEVER let school staff speak with any of my child's physicians- huh-uh. I don't know what the school is going to say or how they are going to present the problem in their own skewed way. I will bring them reports and recommendations from the doctor, but I will decide what information gets shared.

 

I'm sorry you're stuck in this situation. I would not send my child back to that school. Even if the behavior plan changes to reflect what she really needs- that attitude will be there. I seldom get angry over anything these days, but stuff like this gets my blood boiling. Is this their version of positive behavioral support and least restrictive environment? Ask them for documentation that this method of theirs is successful in helping children w/ anxiety based behavioral problems. They've got some nerve making any child "earn" the "privilege" of being treated w/ dignity. And when their plan fails- (you know it will), they will blame it on your child for noncompliance w/ their assinine demands.

 

Consider getting an advocate-

[bronxmom2]

Coco, please don't send your beautiful daughter back to that school.

This "behavior plan" sounds like torture. Literally. Reading this made me really really mad.

Don't forget that every child represents revenue for a school-- tax dollars. Cut them off.

 

Has it been really hard to keep her at home?

Does she like school?

[thereishope]

Unbelievable! I think I'm still in shock. The fact that they would put a child, regardless of the issue or what the root cause is, an a 10x10 room with no chair, no desk...why don't they just pad the walls while they're at it? Does your district have an advocate? It is time to branch out and if you haven't threatened legal action, the time has come. No way. This is just not right.

[MomWithOCDSon]

Another vote here that you arrange for an advocate. I know that there are consultants out there who make a living advocating for families like ours with the school systems, but I also believe there are some non-profit groups who also can lend a hand. We were helped in our IEP process by a friend who's been an educator for 30 years, knows the IEP process and the law(s), knows our DS, and has a reasonably cool head of her own to contribute. So, if at any point in time there's been a teacher or a coach or anyone with whom you and your DD have had a good rapport, you might consider approaching them about helping you advocate.

 

Finally, I'd like to say to both you, Coco, and mama2alex, your child is entitled by law to the LEAST restrictive educational environment available to serve their needs! That is FEDERAL law! So, if your school cannot provide your child with a suitable educational environment, the district is REQUIRED BY LAW to send them to the best available option, and not only that, they are required to do at at THEIR cost, not yours! And you are permitted a voice in that selection process.

 

So if you are looking at expensive private options (smaller classroom sizes, therapeutic services, etc.) for your kids and wondering how you're going to swing it, just know that it will take a fight (because they don't want to withstand the costs, either), but they MUST help your child.

 

Not cage her. Not torment her. Not "discipline" her. HELP her, dagnamit!

 

I wouldn't send her back to the school, either. But I would make sure that everybody and his dog in the district knows that you're NOT keeping her out because you've decided to "go a different way" and have an alternative available to you. Let them know that you're holding her out because you vehemently disagree with the proposed behavior plan, that you find it Machavellian, unacceptable, punitive, destructive as opposed to constructive, etc. Say it firmly, say it in writing, say it thoughtfully and without necessarily pointing specific fingers. Finger the Plan, rather than the people who designed it. Maybe calm, resolved, intelligent insistence will earn you an advocate somewhere in that morass of the school bureacracy, and having a "friend" on the inside could prove to be very valuable.

[coco]

You are all soul sisters. You know, we are and have thought seriously about getting an attorney/advocate but the truth of the matter is we have been consumed with all that has been going into getting her better. The first four weeks after ivig were horrid, truly. Then steady but very up and down progress ensued. It was not until we began treating her "old" mycoplasma infection with Biaxin that things really started to be positively much better. I could write an entire separate post on that alone. Anyway, I am continually stunned that this group of "educators" stares at me with blank, dopey faces, try to trip us up, and refuse to be "educated" on this is beyond me. There is no concern for how my dd is really doing, the torture she has had to endure...very unsympathetic, and no "umph" in their voices for possibly rescuing her from this!!

 

There are less than 5 weeks of school left and we felt that by the time we got someone on board and actually scheduled a meeting the year would be practically over...probably dumb on our part, but September is closer than we think and we really do need to pony up a professional if we are continuing there. Yes, we are beginning to look at private schools to see if there is a "happier" fit somewhere else.

 

Bronxmom, funny you mention that "is it hard to keep her at home?" At the beginning I didn't know if I was coming or going, lack of sleep, always worried, stress of doing the right thing medically, navigating the muddy pandas waters, etc...but over time as she started to get better we kind of got in our own groove here at home. We sleep in a little later, plan an outing of some sort or work on a project, she sees a private tutor and speech path a few times a week (thanks to great hubby work benefits) and then these school-provided people 3 hours a day kind of round out our day. There is a sense of "freedom" in all this and not having to be involved with them over at the school on a daily basis has been great. I think if we were wealthy we would opt for tutors and not bother with any of it. My daughter likes school, or perhaps "wants" to like school. She loves her little friends and the specials, music, assemby, gym (even though she struggles mightly with sensory issues) and wants to be there, yet she seems relieved to not have the pressure of coping. She has some learning disabilities, but Dr. K says that it could all be due to pandas and when she heals that may improve. We can only hope.

 

My husband -- yes, the "calm and measured" one -- should be dealing with the school more, especially now. He does a lot but I think we need more help here from someone who can play harder than we can.

 

Peglem, I know exactly what you mean about the school phoning the doctor and cherry-picking the information they want and positioning it in a way that you have to defend yourself and come off like a loon in front of everyone. Can you believe the SCHOOL NURSE called our doc twice but could not reach him to "get an answer" about all this??!!! She announced this at a team meeting! I about peed my pants when she said that! We have since written a letter saying that no one is to call my dd's physician any longer. They already had two conversations with him.

 

How about I take all you with me into the next meeting? The Bloods and the Crypts! I love you all!

[peglem]

Mom w/ OCD said it all, but also, have an idea for a supportive and appropriate behavior plan that will meet her needs and HELP her return to the school environment successfully.

[thereishope]

Start the process for next year now. Districts won't do much over the summer and it takes forever to get things like IEP's in place. even now, they will give you the run around.Schools have tons of IEP mtgs to get the IEP in place for next year. Just had mine last week.

 

 

You are all soul sisters. You know, we are and have thought seriously about getting an attorney/advocate but the truth of the matter is we have been consumed with all that has been going into getting her better. The first four weeks after ivig were horrid, truly. Then steady but very up and down progress ensued. It was not until we began treating her "old" mycoplasma infection with Biaxin that things really started to be positively much better. I could write an entire separate post on that alone. Anyway, I am continually stunned that this group of "educators" stares at me with blank, dopey faces, try to trip us up, and refuse to be "educated" on this is beyond me. There is no concern for how my dd is really doing, the torture she has had to endure...very unsympathetic, and no "umph" in their voices for possibly rescuing her from this!!

 

There are less than 5 weeks of school left and we felt that by the time we got someone on board and actually scheduled a meeting the year would be practically over...probably dumb on our part, but September is closer than we think and we really do need to pony up a professional if we are continuing there. Yes, we are beginning to look at private schools to see if there is a "happier" fit somewhere else.

 

Bronxmom, funny you mention that "is it hard to keep her at home?" At the beginning I didn't know if I was coming or going, lack of sleep, always worried, stress of doing the right thing medically, navigating the muddy pandas waters, etc...but over time as she started to get better we kind of got in our own groove here at home. We sleep in a little later, plan an outing of some sort or work on a project, she sees a private tutor and speech path a few times a week (thanks to great hubby work benefits) and then these school-provided people 3 hours a day kind of round out our day. There is a sense of "freedom" in all this and not having to be involved with them over at the school on a daily basis has been great. I think if we were wealthy we would opt for tutors and not bother with any of it. My daughter likes school, or perhaps "wants" to like school. She loves her little friends and the specials, music, assemby, gym (even though she struggles mightly with sensory issues) and wants to be there, yet she seems relieved to not have the pressure of coping. She has some learning disabilities, but Dr. K says that it could all be due to pandas and when she heals that may improve. We can only hope.

 

My husband -- yes, the "calm and measured" one -- should be dealing with the school more, especially now. He does a lot but I think we need more help here from someone who can play harder than we can.

 

Peglem, I know exactly what you mean about the school phoning the doctor and cherry-picking the information they want and positioning it in a way that you have to defend yourself and come off like a loon in front of everyone. Can you believe the SCHOOL NURSE called our doc twice but could not reach him to "get an answer" about all this??!!! She announced this at a team meeting! I about peed my pants when she said that! We have since written a letter saying that no one is to call my dd's physician any longer. They already had two conversations with him.

 

How about I take all you with me into the next meeting? The Bloods and the Crypts! I love you all!

Edited May 12, 2010 by Vickie

[coco]

This is what they don't get: How could something like this BE MEDICALLY BASED instead of deliberate, especially since she appears to do this so willfully, in some cases with a smile on her face, giggling. They don't understand the concept of "mood lability" -- having the wrong facial expression that does not match the crisis at hand. What is "learned" behavior in the face of medically-based behavior? How do they tell the difference? I say that the behavior that results from pandas can result in some learned behavior, but educational intervention needs to be supportive, gently and consistently corrective and she needs to have a lot of patience shown to her as she recovers. Am I off base on this at all? I even contacted Yale yesterday to speak with a therapist who was baptized in Pandas and had strong pediatric OCD/Anxiety skill set and could advocate for my dd, and teach them how to handle her/this and help put together a new behavior plan that incorporates ERT and CBT techniques. But, then I wonder, why do they get to "practice" on my dd?? Why should I do all this extra work? There must be a setting where all this foundation in already in place and humming, right?? And that's where she needs to be.

[Mustang Carole]

Hi Coco,

You, family and daughter have gone thru enough already, and do not need school to make all your lives miserable.

Good move getting your daughter homeschooling...your dr can write a perscription that you present to the director of school board

and send also to the head of your state school representative stating that your child needs extended home schooling. Thee should all

be copied and presented at your iep...GET an ADVOCATE !!! Ours was only about $15/hr and I gave her some bonuses over the years.

 

Go to Wright's Law.com.

This lawyer is all for our kids and is a genius. If he comes to your home state, attend his lecture, worth every penny and you get

books and hand outs....he teaches you to be an advocate for your kids!

 

Hope this helps...we had our son homeschooled for 3 yrs until he has phareses , healed and back in school.

 

Mustang Carole

[saidie10]

This is unbelievable! So sorry your DD and your family are going through this. I can not believe the measures they want to take. What a crock! Oh let's basically punish her for something she can't control! Glad you have a place to vent and hope someone can knock some sense into them!!!!

 

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!!

[T_Mom]

Oh my gosh--I cannot believe what I just read-- no desk or chair?!? empty room until she "earns back"...?!

 

This is ruidiculous--I would ask the school Principal what does she/he think this will "tell" your daughter about how the school views her?...as an animal, or as a competent, "We know you can do it" type of student?!?--even when misbehaving, acting out, etc. every child deserves to have the school believe in them and be a positive support. Yes there are consequences, but she is sick. If it is PANDAS she can no more control the symptoms then my daughter could control the urge to walk circles or rearrange the book case in the classroom (when ill)...If it is PANDAS, reassure them that it will get better--that you need time.

 

I would ask the district for a consult with a behavioral specialist before next year -- Call your local or state chapter of Council for Exceptional Children and ask them for a recommendation of a parent advocate to take with you.

 

No need to be concerned about what they think of you-- What matters now is getting through the next few weeks, healing and resting over the summer--and getting well. Whether or not you choose to put her back into that environment has yet to be seen and there will be numerous factors for consideration obviously--

 

This upsets me so much I can hardly keep typing! I wish you the best-- I have been there and done that--I can tell you, I will never do it again. The concern is for you daughter only at this time--all else is a flash in the pan, and will not be long remembered.

Her experience will. All the best,

TMom

[peglem]

Y'know, even if this was attention based- they have wrong solution. The way to deal with kids who act out for attention is to meet their need for attention in positive, acceptable ways. Like make them teacher's helper, teach them appropriate ways to get the attention they crave. 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?)