Talking to school What info should I take?

[britneymag]

I am setting up a meeting with my dd's principle, counselor, and school nurse along with her teachers. Is there any good easy to follow info out there to present to them showing why my dd is not able to sit still and do her work. I can't simply say well she has pandas and that means that she can't control her tics and she can't sit still. I need to have something in front of me to support this. they know that she is smart and they think she is just being lazy and is not wanting to do her work. She gets something and just rushes through it because she doesn't want to have to worry about it. her handwriting is horrible right now and it was so nice at the beginning of the year so that is another reason they think she is being lazy now. They don't realize that she can have changes ovrnight. Also, I need them to understand that her brain will not let her slow down and do the work right when she is left on her own. I am thinking about trying homebound so I can work on her work with her but i need to seem like I know what I am talking about:)

 

Melanie

[ShaesMom]

 

 

I am setting up a meeting with my dd's principle, counselor, and school nurse along with her teachers. Is there any good easy to follow info out there to present to them showing why my dd is not able to sit still and do her work. I can't simply say well she has pandas and that means that she can't control her tics and she can't sit still. I need to have something in front of me to support this. they know that she is smart and they think she is just being lazy and is not wanting to do her work. She gets something and just rushes through it because she doesn't want to have to worry about it. her handwriting is horrible right now and it was so nice at the beginning of the year so that is another reason they think she is being lazy now. They don't realize that she can have changes ovrnight. Also, I need them to understand that her brain will not let her slow down and do the work right when she is left on her own. I am thinking about trying homebound so I can work on her work with her but i need to seem like I know what I am talking about:)

Melanie

It definitely helps if you have something from a Doctor stating the diagnosis. Have you been in contact with Dr. K? We gave our school a copy of an email he sent me after our phone consultation stating she had Pandas. We also had a letter from her Ped.

We have a Section 504 plan in place this year that allows for additional absences beyond what the district allows among other things. It is a Federal program so if you are at a public school you should be able to get one in place. The plan is designed around the individual needs of the student-like additional time for test taking and assignments.

I also took in some handouts on Pandas that I could find. There isn't a lot out there. You may to get their emails and send them links to the recent news story that have ran.

Here are some handouts I used:
http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf
http://www.jfponline.com/Pages.asp?AID=2011


Good Luck! Edited October 25, 2016 by Administrator
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[Worried_Dad]

Hi, Melanie:

 

Check out this thread, has some useful links in it.

 

http://www.latitudes.org/forums/index.php?showtopic=4477

 

Hope that helps!

[Megs_Mom]

We used the "school nurse" info sheet as it was written like a teacher - it was well received. Then we wrote up a brief history for our dd & what they could expect as issues in the classroom (brief & bullet pointed). Then we had info on each of her doctors with names & phone numbers (I said things like NEUROLOGIST not just ped). We also provided them with specific coping idea (if getting out of sync, let her leave classroom to run for 3 minutes or do jumping jacks as a class. Ask her to do all the "heavy" work such as putting up chairs, etc.) I suggested intervention before frustration - send her to the board, or have her hand out papers, if they sense she is getting frustrated. We asked for permission to have her sit on a bounce seat, or to be allowed to stand next to her desk & move around it if needed. For handwriting, if she is old enough, you can ask to use one of the computerized writing tools or have an allowance made. I showed examples of handwriting in a good point & in a bad point - documented with the illness level next to the picture. We asked for an immediate email if she had any issues, so that we could develop a plan as a team. To me, so much of this should be understood & helped by a decent teacher!!!

 

While we did mention PANDAS, in general, we called it a "recoverable Neurological illness", and explained the cycle of the illness so they understood that we were talking about a few months or longer. We also focused a lot on Meg's courage in the face of adversity with a neurological illness & her determination to succeed. I find that repositioning the child in the teacher's mind is critical, so we try to point this out a LOT. I want her viewed as a hero, not a victim, and certainly not as a lazy kid. I still send notes in about how Meg completed her homework while sitting in a doctors waiting room, etc - and how much she wants to finish everthing despite appts, etc. I try to make it a fun cheerful note, but always focused on a main point - that Meg is doing and dealing with a LOT more than most kids.

[harmony]

I am setting up a meeting with my dd's principle, counselor, and school nurse along with her teachers. Is there any good easy to follow info out there to present to them showing why my dd is not able to sit still and do her work. I can't simply say well she has pandas and that means that she can't control her tics and she can't sit still. I need to have something in front of me to support this. they know that she is smart and they think she is just being lazy and is not wanting to do her work. She gets something and just rushes through it because she doesn't want to have to worry about it. her handwriting is horrible right now and it was so nice at the beginning of the year so that is another reason they think she is being lazy now. They don't realize that she can have changes ovrnight. Also, I need them to understand that her brain will not let her slow down and do the work right when she is left on her own. I am thinking about trying homebound so I can work on her work with her but i need to seem like I know what I am talking about:)

 

Melanie

I collected information and made a "teacher resource" binder. I filled it with clinical studies from Swedo, info. on OCD, Tourettes, Pandas and teacher resources.

 

I don't know if your daughter was ever diagnosed with Tourettes (my son was- but only has tics while sick).

http://www.tourettesyndrome.net/behavior.htm

This site is awesome it covers the "plus" or co-morbid disorders- including behavior changes, anxiety, rage, OCD.

It has an actual section for teachers and classroom settings. It is designed to help teachers not only understand this neurological disorder but also gives suggestions for handling and preventing situations.

I have used this book for the past 3-4 years, I give the book to each teacher at the beginning of the year during our conference- they can bring it home and read it or just reference it when certain problems arise. And they give it back to at the end of the year. The problem is- you can educate the faculty on the disorder (assuming they will actually listen and take you serious) - but chances they don't know how to handle situations when they arise. I haven't checked for teacher resources in years- you might actually be able to PANDAS teachers resources now- the word is getting out

good luck!

[britneymag]

Thanks everyone for the info. I will definately use these sites to get together a packet. We are treating dd for PANDAS and she her Cam Kinase from Dr. Cunningham was 173 which puts her high up there,but she hasn't gotten an official diagnosis. We see the neurologist on Feb 8th and will hopefully get the diagnosis then.