Teacher Frustration

[ShaesMom]

I asked my dd 1st grade teacher to keep a journal for two weeks that I could take with me to the Rheum. It came home today in an envelope addressed "To the Dr's of..." with the date written over the licked seal. I assume this was meant so I wouldn't open it. Anyway, after reading her notes it is quite clear that she believes my dd's separation anxiety is clearly a reflection of me and how I have reacted to the ordeal. My dd was a model student prior to Feb and the teacher was actually a friend. I have done nothing but insist that my dd attend school every morning--almost to the point where I think I might be to hard on her.

 

I explained at a meeting with the school psy. and her teacher that her behavior was due to the inflammation in her brain but clearly they still believe that it is strictly a behavioral problem. this frustrates me to no end! There were a few days where her anxiety level was an 8-10 the entire day of school. Why would someone not call me to come and get her if she was struggling so much.

 

Last week the school actually asked me not to attend a field trip with her class because they were concerned that she was going to disrupt the rest of the class when I left. Needless to say her teacher was not very happy when I informed her that I would indeed be going on the field trip and taking me daughter home with afterwards. In fact, she said she would pass along my decision to the principal. Since when does a principal need to know a parent is going on a field trip??

 

Sorry, I just need to rant & rave! Thanks!!

 

Sam

[Dedee]

Rant on girl. How absolutely ridiculous. Can you get a letter from your doctor who treats the PANDAS explaining that this is a physical reaction? Also, I would take in some articles to educate the teachers. That is a horrible way to treat a parent. It is so much easier to just say that it is poor parenting than to open their mind to something they can't understand. People are so mean and judgemental. I'm proud you are standing up for your daughter. How I wish PANDAS was more recognized and accepted. I guess many people will alway feel uncomfortable when faced with psychological issues, regardless of the cause. Just know we are all behind you and praying things improve with your daughter. Stay strong.

 

Dedee

[michele]

I feel your frustration. I myself am a teacher. My son is in first grade. Last year the kindergarten school was very sympathetic to us and my son. Even the nurse and secretary made a point of calling when strep was in the class. This year we are in a different school. I talked to the principal and teacher prior to the new year and told them personally what my son was going through. He did get a good teacher this year who works well with special needs kids. However, they were determined to act like he was fine all year and did not need any special services. Also on several occasions the teacher has acted like it is a home issue not a school issue which translates to a parenting problem. I tried to explain the psychologist we are using and the discipline/reward system so she knew we were working on it at home. Again they acted like I was making things up and they see nothing at school with him. However his grades continued to be unsatisfactory. Finally I talked to the special ed director and he understood that it is not behavioral with PANDAS/Tourettes but neurological. He made them give him an IEP for tutoring. He went above the psychologist and principal. I have gottten the impression from the teacher that she avoids me. However I have always been a room parent for my other kids and go in to help as often as they need me. His teacher has never needed me. See, mom's like us, they want at arms length. We scare them. Just remember they are only in the picture for a year but these kids are ours forever. Do whatever you need to do for your daughter. It may sound brutal but some parents take them out during the bad episodes so the kids don't have to endure the cruelty of the unsensitive schools. Just do what is best for you and your daughter. Don't worry about them.

 

I asked my dd 1st grade teacher to keep a journal for two weeks that I could take with me to the Rheum. It came home today in an envelope addressed "To the Dr's of..." with the date written over the licked seal. I assume this was meant so I wouldn't open it. Anyway, after reading her notes it is quite clear that she believes my dd's separation anxiety is clearly a reflection of me and how I have reacted to the ordeal. My dd was a model student prior to Feb and the teacher was actually a friend. I have done nothing but insist that my dd attend school every morning--almost to the point where I think I might be to hard on her.

 

I explained at a meeting with the school psy. and her teacher that her behavior was due to the inflammation in her brain but clearly they still believe that it is strictly a behavioral problem. this frustrates me to no end! There were a few days where her anxiety level was an 8-10 the entire day of school. Why would someone not call me to come and get her if she was struggling so much.

 

Last week the school actually asked me not to attend a field trip with her class because they were concerned that she was going to disrupt the rest of the class when I left. Needless to say her teacher was not very happy when I informed her that I would indeed be going on the field trip and taking me daughter home with afterwards. In fact, she said she would pass along my decision to the principal. Since when does a principal need to know a parent is going on a field trip??

 

Sorry, I just need to rant & rave! Thanks!!

 

Sam

[EAMom]

Hi Sam,

 

I'm sorry your school is giving you a hard time...

this is a good article to share with school staff http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

 

eventually you may need an IEP...PANDAS counts under OHI (other health impaired).

[amy s]

This is a great article...I am forwarding it to all the teachers, principals, and school nurses that I know. I only wish there was something more recent that also speaks of IVIg. Over the past two school years...and many many contacts with school employees.... I have yet to have contact with anyone in the school district that has ever heard of PANDAS. Also...how do you know that PANDAS diagnosis warrants an OHI IEP? Is there anything legal that is out there stating such?

My dd does not have an IEP any longer since she is symptom free since IVIg (in November) ...however, when she needed one they refused to give her OHI regardles of my protests. Again, great article...thanks for posting it!

[ShaesMom]

Thanks everyone for the support! I'll definitely pass along the article.

 

Sam

[michele]

The school nurse article is very good and I have given copies to all his teachers and principal of it. Here are two more NY Tiimes articles to wrap their gifts in!

http://query.nytimes.com/gst/fullpage.html...&sec=health

 

Isn't there some sort of research fund we could have for PANDAS? I wonder if Dr. Leckman/Diana could help organize this? I know he is trying to get a grant to research in the next few years. We really need to spread the word and give more recognition to the disorder. Start an organization, do walks for the research funds. Anyone interested?

 

Michele

 

Thanks everyone for the support! I'll definitely pass along the article.

 

Sam

[ShaesMom]

Michele,

 

That sounds like a great idea. You should post it under a separate heading.

 

Sam

 

 

Isn't there some sort of research fund we could have for PANDAS? I wonder if Dr. Leckman/Diana could help organize this? I know he is trying to get a grant to research in the next few years. We really need to spread the word and give more recognition to the disorder. Start an organization, do walks for the research funds. Anyone interested?

 

Michele

 

[

[pmoreno]

I asked my dd 1st grade teacher to keep a journal for two weeks that I could take with me to the Rheum. It came home today in an envelope addressed "To the Dr's of..." with the date written over the licked seal. I assume this was meant so I wouldn't open it. Anyway, after reading her notes it is quite clear that she believes my dd's separation anxiety is clearly a reflection of me and how I have reacted to the ordeal. My dd was a model student prior to Feb and the teacher was actually a friend. I have done nothing but insist that my dd attend school every morning--almost to the point where I think I might be to hard on her.

 

I explained at a meeting with the school psy. and her teacher that her behavior was due to the inflammation in her brain but clearly they still believe that it is strictly a behavioral problem. this frustrates me to no end! There were a few days where her anxiety level was an 8-10 the entire day of school. Why would someone not call me to come and get her if she was struggling so much.

 

Last week the school actually asked me not to attend a field trip with her class because they were concerned that she was going to disrupt the rest of the class when I left. Needless to say her teacher was not very happy when I informed her that I would indeed be going on the field trip and taking me daughter home with afterwards. In fact, she said she would pass along my decision to the principal. Since when does a principal need to know a parent is going on a field trip??

 

Sorry, I just need to rant & rave! Thanks!!

 

Sam

 

 

 

Ahhh yes - school frustrations - so familiar to me now. I remember reading someone's post months ago - maybe it was Amy S of daughter in school under desk - wouldn't come out and acting aggressively to teachers. I used to sympathize and say a silent prayer of thanks that it hadn't gotten to that with my daughter. Well for the last 2 months it has. She is hiding in corners, under desks, in the girls bathroom, running out of the building, climbing on tables or file cabinets, yelling at, hitting and kicking teachers. She can have a pretty good day and then without provocation, frown and sullenly complain that someone is being mean to her or that she is really mad. This escalates until they usually call me and tell me to pick her up. She can no longer be in a regular classroom because the episodes are too frequent now and she gets loud and physically aggressive. (This from a girl who was always sweet, polite and very shy). They have made her OHI. Unfortunately there is no place for her in the school district. None of the special classrooms really meet her needs. So for now she stays in a little room with an aid until the end of the school year. As for next year they want to bus her out of the district to a county school which would mean almost an hour bus ride there and back. If it comes to that I'll have to home school. Don't know a thing about that - although I imagine it will be a lot of work and I pray I have the patience. If you are reading this, Amy S - I am very happy for you that IVIG worked so well for your daughter and that she is symptom free since November. We weren't quite as lucky. Even though our Oct. IVIG did get rid of the tics completely, the odd behaviors have come and gone with some going away and new ones appearing. Still using a lot of nutritional support - hope that it just fizzles out after a while. I know that some of the other IVIG successes took at least a year or 2 to completely recover.

[thereishope]

My son has an IEP and PANDAS is mentioned in it. I have a feeling that right now one may only be able to get PANDAS acknowledged on an IEP (as medical background) if the child qualifies for some service. Even if your child has sensory problems,symptoms of OCD, ADD, etc they might qualify for help. My son was already getting speech services from the district and the slp and special ed teacher noticed the change in him and have very patient and helpful with it. From now on, he has it in writing that the teachers are suppose to be aware of PANDAS.

 

You might want to contact the district heads directly and skip the teacher. They will ask for her input but also explain your problems with her. They are the ones who make the ultimate decision, not the teacher. You also need to put a formal complaint in about her.

[EAMom]

Our dd's psychiatrist wrote a great letter for us re our dd's PANDAS (social anxiety, ocd etc.). So, our dd now has OHI marked on her IEP. Originally, she only had an IEP for speech (since her big PANDAS episode didn't happen until just after we did the IEP for speech last school year).

 

If you can get a doc to write a letter that would be very helpful. In the letter they could also mention some of the issues with PANDAS, handwriting, anxiety, math problems. You can then ask for accomodations (more time on tests, have teacher provide notes so your child doesn't have to copy from the board/write as much, alphasmart, persmission to type instead of write etc.). Depending on your schools funding and how affected your child is you might also be able to get other stuff (OT, extra help etc.)

 

Here's the website page where I figured out that PANDAS could count as OHI http://pandasresource.org/aboutus.html

 

We're still encountering some frustration however...several folks (OT's, educational specialists, docs) have told us our dd should have OT. When we went to the OT covered by our insurance (in network) they actually recommended we get OT from the school since our primary issue was handwriting and otherwise she wasn't that bad. However, when the school did a "screening" they did say she had a problem but apparently it wasn't bad enough to even qualify for a full evaluation (never mind services!). Ughhh. what a run around.

[Lacy]

I completely echo everyone's sentiments and offer a lot of sympathy for what you're having to go through. ::hugs::

 

We got extremely lucky with our DD's school - especially because it's way out in the country and they don't always get the cream of the crop with staff. The school psychologist just happened to have worked 1 other PANDAS related case in the county so she was on board with us from the beginning. Luckily she was also the first one to do DD's child studies testing so we could qualify for the IEP. Out of curiosity what is an OHI?

 

In my heart I know that it would've been a much more difficult (if not completely impossible) task to get everyone to "buy into that PANDAS thing" if it had not of been for that school psychologist. Unfortunately she's no longer at DD's school, but is still in the district. The new school psychologist that did DD's 2nd child studies testing definitely tried steering everyone towards behavioral and emotional issues, but luckily nobody really bought into it since they've seen DD at what should be her norm (when we did her long term antibiotics during 1st grade) - she's very sweet, caring and playful. Not so much shy, but a "normal" child her age.

 

So it's around this time of year that I still get nervous about DD moving forward to a new teacher. School in these parts wraps up the Friday before Memorial Day, and starts up again mid-August. These past two years (1st & 2nd grade) we got extremely lucky with her teachers - they are identicle twin sisters who are very close and have very similiar teaching methods. It was like getting the same teacher twice - and they both obviously care deeply for DD despite her meltdown moments - they know it's not normal for her. They also have been extremely tolerant enduring my countless e-mails and notes to check how DD is doing on almost a daily basis.

 

Sorry if I started rambling... time to hit send.

[ShaesMom]

Several of you have said you your child is receiving EIP -- What is EIP???

 

Sam

[peglem]

Several of you have said you your child is receiving EIP -- What is EIP???

 

Sam

IEP=Individual Education Plan. This is an individual plan for the education of children who have needs outside the regular curriculum. It is meant to allow for and make the school responsible for taking steps to make sure that children who are impaired in some way still receive FAPE (Free and Appropriate Public Education).

[thereishope]

Another bit of info about IEP's. According to my son's slp and special ed itinerant teacher is it's easier to qualify for services when your child is still young enough for Early Childhood. That is, I believe, from age 3-6. After that, once they are in kindergarten, it becomes harder to qualify. The disability must affect the education and learning at that point to an extreme. My 8 year old has speech problems, but won't evene get evaluated because they deem he is still learning up to speed. Frustrating sicne it does affect his spelling. But I cannot get him therapy on my own since my insurance will not cover any, even if I meet my deductible.Whereas, my 5 year old (the one w/PANDAS) even got an eval for sensory even though I didn't even think it was an issue, but the slp wanted to rule it out. They rushed that one to be done since this is the last year he qualifies for Ealry Childhood.

 

Long story, if your child is under 6, get any evaluation you think your child would benefit from now before the are in kindergarten. Don't wait and remember it is a very long process that takes months so allow time for it.