School

[AmbersMommy]

Hi,

 

I feel like I am talking to a brick wall when I talk to my dd's teachers sometimes. It is very frustrating. Currently she is getting a tutor at home, but I plan on having her go back to school part time in January. They keep trying to get me to send her to school for an hour or so a day. I just absolutely do not want to send her right now. She is in kindergarten. I just want to have a nice Christmas. She is doing so very well right now and I want her and the rest of our family to enjoy it before she backslides. I am assuming that once she is exposed to strep, a virus, bacteria whatever that she will no doubt backslide. I have been basically keeping the poor kid a prisoner in the house most of the time. We did go to the movies, and she did go to one Daisy Scout Meeting last month. Her teachers are worried because she writes the letter e backwards. That just seems so absolutely trivial to me right now. I could care less if she can count, or read, or any of that stuff. There will be time for all of that. Right now I just want my little girl to be...as close to a normal little girl as possible for as long as I can keep her that way. I have a doctor's note to keep her out of school until January. I wish they would just stop pushing the issue. Sorry if I seem melancholy. This is all just so very hard.

[thereishope]

About the letter e...if that's one of their biggest worries, that's just silly. Even in the first grade kids may write some letters or numbers backwards. Don't worry about that at all.

 

I understand where you are coming from about Christmas and just that need to have it be happy. I totally get that. If you want to keep her home for the rest of the year, then do that. As for being a prisoner in the house, just make sure she gets out every day, even if for a drive in the car, a walk somewhere, just something. Is she complaining about being at home?

[momcap]

Don't feel bad! You know what is best for your daughter. She is still so young. In our school district kindergarden is completely optional. Some kids go all day, some go half days, some start in January, and some don't bother with Kinder at all. As for writing e's backwards, I would consider that pretty much normal for kindergarden.

[smartyjones]

I feel like I am talking to a brick wall when I talk to my dd's teachers sometimes. It is very frustrating. They keep trying to get me to send her to school for an hour or so a day. I just absolutely do not want to send her right now.

 

 

this sounds as if i am disrespectful to teachers and i certainly am not . . . i just feel for this disorder, it's as if we're speaking Greek and they are understanding English. i think they want to understand but then just put what we say into their bag of experience and come out with what they've seen before. really -- how many pandas kids have you taught?

 

okay -- sorry -- a little off topic. i think you're asking from an exposure standpoint - ? -

 

i think the bottom line is -- we, as parents, are the ones making the decisions. i feel for your dd's teachers that they are looking at her as an 'average' kid and don't want her to fall behind academically and socially. however, there is no way for them to even begin to comprehend what you know. i say go with what you feel is right . . . and stick to it. don't let yourself be swayed by people who don't know what you do!

 

as far as e's -- my ds is first grade -- often writes 7's and 3's backwards; mixed up the common letters long after he could read fluently. doesn't like to write b/c he can't do it appropriately. i think it's pandas related. as a sidenote -- he's also a h*## of a switch-hitter at age 6.

[pandasstl]

I have the utmost respect for teachers, but people do NOT fully understand this disorder unless they have lived it. If it was 4th or 5th grade, I could understand--but Kindergarten where every kid is wiping their nose and playing together--no way--not worth it. I am an occupational therapist--forget the e--you can work on it more at home than at school anyways. Do what your gut says--don't be pushed into something trivial and regret it later.

[dcmom]

omg.

 

I have only had positive interactions with school personnel and teacher so this type of stuff floors me.

 

I think- you need to go in confident: "this is what my daughter has, this is how it presents, this is what needs to be done." I would not ask them for advice. If possible I would have letters from docs (neurologist, psych, ped, whatever) stating clearly and briefly how pandas should be handled.

 

My older daughter- pre pandas- and now a straight A middle schooler, wrote some numbers backward to mid first grade. She had an exceptionally professional teacher that year, who told me that it is developmentally appropriate to write letters/numbers backward to mid first grade, later in the first grade year you might talk about it.

 

My little one is in second grade now. She mixes her b's and d's- and occasionally (when tired) will write a letter or number backward. That is a form of dysgraphia- which, for her, is caused by pandas. We (and her teacher) are not concerned. She reads, writes, gets all of the concepts, and does well in math. In early elementary- the only thing I think is important is to foster a love of learning, and their natural curiosity.

 

Have faith in yourself. You ARE doing the right thing. In K- the most important thing is that they are happy! She will get her e's

[AmbersMommy]

About the letter e...if that's one of their biggest worries, that's just silly. Even in the first grade kids may write some letters or numbers backwards. Don't worry about that at all.

 

I understand where you are coming from about Christmas and just that need to have it be happy. I totally get that. If you want to keep her home for the rest of the year, then do that. As for being a prisoner in the house, just make sure she gets out every day, even if for a drive in the car, a walk somewhere, just something. Is she complaining about being at home?

 

Vickie, My daughter doesn't complain about being at home. As a matter of fact she doesn't want to go out a lot of times. I have a 3 year old little girl as well and they have just begun to play together really nicely. My dd6 who has PANDAS has literally just started interacting with her over the past month. It is a wonderful thing to see. You are right about getting her out though. I need to make more of an effort. A drive sounds rather nice to me too. We did walk around the block before it started to get too cold out. Thanks for the input!

[thenmama]

xxx

Edited March 26, 2013 by thenmama

[SarahJane]

Here's what I think. They probably don't get their money if your daughter is out of school. They want her there part of the day so they can get it or a portion of it. The teacher may also be envisioning that your daughter will cause her extra work when she comes back after being out for months. Or they may be worried about her achievement scores, & if they'll be low enough to pull down the average. It is all a game. But you have the doctor's note & if that's all that's required, then case closed. One hour of school is simply just an hour of germ exposure. I like thenmama's no frills/direct approach above. Nip it in the bud. Enjoy your holidays with a HEALTHY daughter.

 

P.S. I homeschool now after a horrible public school experience last year. PANDAS hit at the end of Jan. We were undx'd & the 2nd half of kindergarten was awful.

[thereishope]

Honestly, just seeing the natural sunlight may help not only her, but you too. Now that people are putting up their Christmas decorations, you can drive around and look at them(even if then lights aren't on during the day). Make a game out of it...count how many you see in a matter of 20 minutes. Another reason to get her out every day is after awhile you can run the chance of her getting anxious when leaving the house. I say the max is 2 days without leaving the house at all.

 

About the letter e...if that's one of their biggest worries, that's just silly. Even in the first grade kids may write some letters or numbers backwards. Don't worry about that at all.

 

I understand where you are coming from about Christmas and just that need to have it be happy. I totally get that. If you want to keep her home for the rest of the year, then do that. As for being a prisoner in the house, just make sure she gets out every day, even if for a drive in the car, a walk somewhere, just something. Is she complaining about being at home?

 

Vickie, My daughter doesn't complain about being at home. As a matter of fact she doesn't want to go out a lot of times. I have a 3 year old little girl as well and they have just begun to play together really nicely. My dd6 who has PANDAS has literally just started interacting with her over the past month. It is a wonderful thing to see. You are right about getting her out though. I need to make more of an effort. A drive sounds rather nice to me too. We did walk around the block before it started to get too cold out. Thanks for the input!

[LaraM]

Keep in mind this post is coming from a former elementary teacher with eight years experience teaching mainly first grade (4th as well). First of all, I am so sorry for your experience. Dude, the letter "e", really??? I remember having to calm parents down about letter reversals being totally normal in first grade. "Your child is fine, it is totally normal to reverse letters...no worries". It truly sounds like she is just trying to find things to pick on--sigh.

 

I will be honest, I can think of many, many times when I left a parent conference thinking "oh these parents just don't get it". Sadly, I was the one that didn't get it. Not only was I teaching prior to having children of my own (which REALLY changes the way I viewed my instructional methods), but I truly thought I had it together and KNEW what these children needed. If only the parents would do "a, b, c", then their children would turn out perfectly. What a juvenile philosophy!!! Aah, to be young and ignorant...

 

I see through a PANDAS mom's eyes now. A sledgehammer came down on our world. It has been a real slap in the face for me because I was most comfortable and in my element in public elementary schools. I also see how incredibly difficult it is to break through that glassy stare or polite nod by school staff that they know what is happening with my sons. No, most teachers/staff don't see it and they don't get it. How can you get that DS5 was so OCD that he didn't eat for two weeks; that DS7 has to shoot imaginary "cancer" to knock it off it's trajectory before it hits him and that's just the tip of the iceberg??? I think the problem is there is a culture of "us against them" with some teachers and the parents that they deal with on a daily basis. It's either that or they just don't believe in PANDAS (because they've never heard of it and it sounds crazy to them) or they genuinely don't care what is going on with their students. How terribly sad is that? I hate to sound so cynical, but it's just what I have seen this year in particular.

 

That was not the case with DS5's pre-K teacher last year...she was AMAZING and I couldn't have asked for a stronger advocate for my child. DS7's kindergarten teacher was also great about PANDAS last year, but his first grade teacher and the former principal...not so much. I haven't even approached the principal this year, and honestly the guidance counselor makes a mad dash in the opposite direction if she sees me coming. I feel like it is a total bother for his first grade teacher to have DS7 come to the clinic at lunch so I can dispense meds (would have nurse do it, but one med has to be crushed and given in yogurt, so the nurse won't do that).

 

To make a long story short, we are bailing on public schools beginning in January. It's just too tough to explain to people and honestly, unless you are walking in our shoes, they won't/don't get it. I think they think we are overreacting, exaggerating or somehow excusing our kids and that is not the case. I just want to scream--please listen, really listen to what I am telling you and have some stinking compassion. Ugh.

 

I would keep your sweet little girl at home. I have decided to circle the wagons around my boys and teach them at home. Besides, DS7's natural inquisitiveness and love for learning is quickly becoming extinguished at school. He isn't getting into trouble, but I am so frustrated that he has to sit for soooo long during the day and how many times is he just going to watch a movie during art, music or PE. Really??? The work is too easy, yet his teacher refuses to make it harder for him because he becomes easily distracted. (Duh, it's because you aren't challenging him). "Until he can do his work in the two minutes I know it would take him to complete the assignment, I will not give him a different assignment". And really, how many more bugs is he going to have to catch at school...we're up to five this year, which is actually an improvement from last year, but it just makes things worse. He is forced to read books he could read when he was four because she is teaching to the majority. Sorry, just got on my soap box. DS7 wakes up each morning counting down the days until he gets to start home school in January. I feel a huge sense of relief knowing that we're done with public schools and I wish I had the strength to fight for them to get it.

Edited December 4, 2010 by LaraM

[Cristo]

Fortunately, kindergarten is optional. The school needs to put that into perspective as well. You can always home school her, if that option is available to your family. You need to be with your daughter, and not worry about the backwards e. You need to connnect with her, and she needs to know her family.

 

There is a good book about children and parents by Gabor Mate called Hold Onto Your Kids, which is about not focussing on the need for peers. It is not about pandas, but it is refreshing to realize that parents should be important in a child's life moreso than peers.

 

Good for you. Take care of your daughter. Spend time with her. I don't find it strange at all...in fact...it is strange when people don't understand that.

 

Some educators are better than others, just like there is good and bad in every profession. Follow your heart. Do what is right for your child. People whose children have been affected by strep, pandas, lyme, or something else, or people whose children get worse with illness, are always on their toes. They are acutely aware of illnesses around them. They are aware of people coughing. They are aware of people sneezing. They are aware of everything to do with illnesses, because they want to keep their kids away from getting them. They want to protect their children.

 

Keep protecting your child.