Homeschooling with PANDAS/PITANDS (and possibly Lymes)

[texascatholic]

Hi There...,

 

I'm just curious how the others who homeschool out there handle "ragey" days

with their little pandas. When your child refuses to read or write do you

try to force things or do you leave them alone and ride out the tantrum that way?

We're in the midst of a reaction to some kind of virus and it's very hard to

get our schooling done (not to mention the other 4 younger siblings - including

2 other schooler) that need my attention. Just hate the thought of falling behind.

 

Sometime I really wonder if some of the rage stuff becomes partially a learned behaviour?

I always am tempted to discpiline for it but after looking into her eyes I can tell it's not

her fault. I'm sure you all know the "look".

 

Just my thoughts for the day!

[matis_mom]

Hi There...,

 

I'm just curious how the others who homeschool out there handle "ragey" days

with their little pandas. When your child refuses to read or write do you

try to force things or do you leave them alone and ride out the tantrum that way?

We're in the midst of a reaction to some kind of virus and it's very hard to

get our schooling done (not to mention the other 4 younger siblings - including

2 other schooler) that need my attention. Just hate the thought of falling behind.

 

Sometime I really wonder if some of the rage stuff becomes partially a learned behaviour?

I always am tempted to discpiline for it but after looking into her eyes I can tell it's not

her fault. I'm sure you all know the "look".

 

Just my thoughts for the day!

I would not push it, her mind is not capable of academic learning when she is in that state. Or maybe it is, but it would have to be something like have her color, bounce a ball, or do something fun while you read to her, maybe put a multiplication tables tape on, or something like that. If she's actively fighting the lesson, there really there is no sense in pushing it. Of course you have to be careful that this does not become the rule, maybe you can give her some options as in: a] we can do the math lesson together now b] you can do your lesson by yourself now or later c] we can read a book d] we can go for a nature walk, etc. You would have to make it something that works for you too, as you cannot let her rages rule the day.

 

But do not worry too much about "falling behind." When she is well you can easily double up on stuff. Just keep track in a planner of roughly where you should be when and try to catch up to that as you see she is able.

[SarahJane]

I finally came to grips (after trying to force it) that ds wouldn't be able to GO to school in that state, so I needed to lighten up as far as having a schoolroom at home. We are in our first year of homeschooling...and all I can say is thank goodness we are.

[smartyjones]

i really have no right to post here b/c last week, i was seriously doubting having any parenting skills whatsoever -- which i used to pride myself on.

 

something i keep in mind is that i believe Sammy missed his entire 7th and 8th grade years yet graduated on time and went to college with his peers at the 'correct' age. i do believe Beth mentions in the book, there was catch-up involved and I do believe Sammy is extremely academically gifted -- but seriously - his entire 7th and 8th grade years!!!

 

last week for us was exceptionally trying -- ds, 6, was quite oppositional defiant -- which i find his most troubling symptom b/c i don't have so much patience anyway, but when that attitude of snotty challenging kicks it, it's doubly hard. so, i was off to find help -- with the behavioral therapist who diagnosed him but didn't so much have a plan in the beginning and more immediately, at the library.

 

i have found some helpful strategies in the book When Labels Don't FIt. i do believe some of ds's defiance stems from sensory issues -- a lot related to time. there's been much more harmony in general and he's been more willing to do school work this week. it has good suggestions in trying to understand how your child experiences his inner world and how that then influences his behavior. it gives explicit strategies that can help -- which was what i needed.

 

the book makes a distinction between "giving" - generosity of spirit, you're in control and making it possible for your child to manifest postive behavior and "giving in" - leting him have his way b/c you can't stand the behavior. when things are difficult in general, i do admit, i am not so giving to him. i've seen in the past few days, a little giving has brought big returns.

 

we're in a bit of a different situation in only homeschooling for a short time. ds had a terrible time last spring semester -- i believe now b/c teacher was stepping up expectations, especially around writing. so he was balking at anything that woudl ultimately involve writing. with beginning this fall, i had decided i would not force that issue. i am acting as his scribe if he wants it. but, he will be in school within this year or next and i figured i would let someone with that expertise help on that. perhaps, if there is something like that at the root, you could get some assistance from a tutor - ?.

 

i am also a huge fan of the book The Explosive Child. that's been very helpful for us with extreme inappropriate reactions. not so much for him changing his behaviors but for how we interact with him to keep it from escalating.

 

good luck!

[rockytop]

I guess I wanted to second (third?) the recommendation to not worry about it too much. I suppose unless you live in a state where they require very distinct measures of academic progress. I would strongly recommend you contact HSLDA about any suggestions they may have - either educating a special needs child- or if school is beyond your wildest dreams right now due to severity- about how to legally handle it. We live in virginia, a very homeschool friendly state- and too be honest, my child has done just about zero since onset (aug 2008). She went through periods where she was unable to write or read (literally)- and at those terrible tiems, that was the least of my concerns. What I find the most difficult is explaining to the others (we have 8!) why she does nothing and they are expected to tow the line. that has been HARD! but now- they are used to it and after seeing her severe suffering - they would rather be doing schoolwork, than being in her shoes.

Thankfully right now my daughter just asks to go the library like twice a week and is reading like a champ. She likes documentaries and history type movies. So I call that good enough for us. She did do one lesson on Teaching Textbooks 6 (great math program, btw) but that was more than her little PANDAS brain can take. That is the same program she started 2 years ago! but I try to be thankful the fact my child is smiling every day now! you can PM me if you want.

Edited May 26, 2011 by rockytop

[nomoz]

We do not homeschool our daughter (8), but I can tell you that when things rev up here (like clockwork early October) she begins to miss about 2 school days a week. My husband worries about her developing bad habits, and about the rages controlling the household. I strongly feel that this is an illness, and needs to be addressed as such. When things are in a more normal state, she really likes school and does very well - she is extremely bright (aren't many of these children??). But when it's bad, it's all a blur. This week it's been going downhill. This morning she was screaming - and saying bizarre things like "I feel like I have to bite the left of everything" and her old tic "JESUS CHRIST" is back too. She did not attend school today.

 

I feel for you, and I admire you and all the other parents who are able to homeschool their children. I hope that you know you are not in this alone.

 

Take care.

Noelle

[texascatholic]

Thanks everyone. Made me feel better. I will PM you, Emuls!

[formedbrds]

N

Edited October 30, 2010 by formedbrds

[momaine]

I have always homeschooled my girls in a VERY relaxed fashion. You might call it interest-based learning. It has never been what people envision when they hear "homeschooling." (sitting at the table for hours every day with a boxed curriculum) It has not hindered them in any way, and in fact, I consider their free childhood a gift that I was able to give them, to allow them to grow up and learn at their own pace and in their own ways, following their own interests.

 

My dd who has PANDAS has decided to take classes at the high school this year as a freshman. She's a young freshman, having just turned 14 a couple weeks ago. She made the transition into high school with ease. (She's a smart girl.) For the last year she had been unable to read or write. (or pretty much do anything at all except watch tv) I can see learning in almost everything , but she did little that even I would consider educational because she was so ill. It did not hinder her at all. As of today, she has an 89 in her English class (never taken a formal class before, so she is learning what is expected of her) and a 96 in her Art class. (which isn't all fun and has quite a bit of art history in it.)

 

My point is, don't worry. School curriculum repeat material over and over. Most kids with PANDAS are smart kids and they will adapt and catch up quickly if they re-enter public school at some point. These children are already filled with anxiety. Make his life as sweet as it can be while he is sick. See the learning in everything he does, from watching TV (even cartoons touch on history, etc.) to talking, being read to, helping you at the grocery store, playing games, etc. Seriously, it just doesn't matter that much. If you have to fudge the records in your state, fudge them. But in my state, I've found a teacher who believes like I do, that learning happens all the time and if you foster a love of learning then everything will fall into place. She is supportive of the way I homeschool.

 

Read the laws for your state carefully and if you're evaluator is rigid, find another one.