School issues

[momtocole1]

Hi Bronxmom, We are home schooling right now. I am hoping and praying that after IVIG he can return. He is in a very small private school that has teacher that is loving, patient and understanding of this disorder ( I flooded her with documentation on PANDAS) She has a heart of gold so we are so grateful.

 

Thanks,

Judy...

 

Judy, did you come up with a solution for your son?

 

I can't remember, are you also homeschooling?

[ajcire]

What is the K12 program?

[mama2alex]

You are so lucky to have such a supportive school and teacher. I am feeling very sad today because our school has not been that supportive. We took our son out for a few weeks due to his immune deficiency. The first thing I got from the school was a somewhat hysterical call from the principal saying the district wouldn't allow us to home school him temporarily. Next I waited a week to get an answer as to whether they would allow it. I finally had to go in to the district office and ask because no one was returning my calls. Then I had to sit with a skeptical assistant superintendant who told me she would approve it, but I had to admit that my child looks fine. Then we waited another week to get a home teacher who continually talks to me about how all her other home school students are too sick to leave the house and are happy to see her when she comes over (my son has been pretty uncooperative with her). The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). Today I got a call from our pediatrician saying the school superintendant called her to ask why he can't go to school, but can go to soccer games. What they don't know is that he wanted to quit soccer, which he's played for 4 years, at the beginning of the season, and we had to work incredibly hard just to get him to participate this year. We wanted to protect our son from illness, but we didn't want to put him in a bubble and allow him to withdraw from everything in his life.

 

Sorry for venting, but this has put extra pressure and stress on me that I just didn't need. Has anyone else had an experience like this with their school?

 

Hi Bronxmom, We are home schooling right now. I am hoping and praying that after IVIG he can return. He is in a very small private school that has teacher that is loving, patient and understanding of this disorder ( I flooded her with documentation on PANDAS) She has a heart of gold so we are so grateful.

 

Thanks,

Judy...

 

Judy, did you come up with a solution for your son?

 

I can't remember, are you also homeschooling?

[EAMom]

The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). 't need.

 

Does she know that PANDAS kids have a hard time writing?

 

The uncooperative behavior is probably PANDAS too.

[peglem]

The uncooperative behavior is probably PANDAS too.

 

You think the teacher has PANDAS?

[EAMom]

hee hee

[momtocole1]

Dear MamatoAlex,

 

If I were you I would print out the PANDAS in the school info that I found on the old posts. Let me know if you want me to find it again and forward it to you. I would specifically show them the article that was written by the grown man with Sydenham's Chorea. PANDAS is so closely related to Sydenham's Chorea. The man that wrote that article talked about what it was like to sit still that it was like torture for him. He said that if he were given a choice whether to sit still for one minute or cross a tight rope between two sky scrapers on a windy day he would most definately choose the tight rope. He also talks about why people with SC have to movee all the time, that moving is what stops the horrible antsiness (sp) that they feel.

 

I'm not sure if your son has had the Madeline Cunningham blood work done, but my son's CAM Kinase II number was 165. He was in the upper range of PANDAS on the JNI article. There were only 3 PANDAS kids on the scale in that article that were higher. (I know that there are kids being tested know with numbers much higher, like in the 200's) What I keep looking at is how close our PANDAS kids are to the SC kids range and some are even in the same range as the SC kids.

 

It just makes me so angry that they are putting you through this. Dr. K explained something to me on our consult the other day that really hit home to me. I asked him how we can possibly explain PANDAS to our family. We have some people that don't even believe that my son Ryan has PANDAS, they think he just has a bad attitude and that he is "playing us". Dr. K. said that it is no use, there is no way to explain it to our families (or schools). That they will never understand. He said if your son had a huge gash on his forehead, people would come from 5 miles to hold him and help him. If he then spit in their faces and called them bad names, everyone would say, oh no, he can't help it, he has a head injury. But when there is a brain injury, and that is how I look at it. Our kids have swelling of their brain. He said people can't SEE psychiatric symptoms and because we are raised in an ideaolgical, freudian society we are taught, "If we want to get better bad enough, we can work on it and get better", but these kids can't get better on their own. They can't be talked through this, counseled through this, they can't just "pick themselves up by their bootstraps and move on".

 

Sorry, now I'm venting. Is there any way possible to move him to a private school? Does he love the school he is in? My son was so relieved when I finally took him out of public school, he was scared, but relieved.

 

I also wonder if you could send a letter or email to the school, explaining in more detail about what is going on.

 

Just some suggestions. Once my son's teacher read the handouts that I found on this forum, she told me he should stay home and be homeschooled until after the IVIG. I know that is because he is in a private school. The schools are just so by the book, they just want the money they get from our kids sitting in a seat!

 

My heart goes out to you,

 

Judy...

 

You are so lucky to have such a supportive school and teacher. I am feeling very sad today because our school has not been that supportive. We took our son out for a few weeks due to his immune deficiency. The first thing I got from the school was a somewhat hysterical call from the principal saying the district wouldn't allow us to home school him temporarily. Next I waited a week to get an answer as to whether they would allow it. I finally had to go in to the district office and ask because no one was returning my calls. Then I had to sit with a skeptical assistant superintendant who told me she would approve it, but I had to admit that my child looks fine. Then we waited another week to get a home teacher who continually talks to me about how all her other home school students are too sick to leave the house and are happy to see her when she comes over (my son has been pretty uncooperative with her). The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). Today I got a call from our pediatrician saying the school superintendant called her to ask why he can't go to school, but can go to soccer games. What they don't know is that he wanted to quit soccer, which he's played for 4 years, at the beginning of the season, and we had to work incredibly hard just to get him to participate this year. We wanted to protect our son from illness, but we didn't want to put him in a bubble and allow him to withdraw from everything in his life.

 

Sorry for venting, but this has put extra pressure and stress on me that I just didn't need. Has anyone else had an experience like this with their school?

 

Hi Bronxmom, We are home schooling right now. I am hoping and praying that after IVIG he can return. He is in a very small private school that has teacher that is loving, patient and understanding of this disorder ( I flooded her with documentation on PANDAS) She has a heart of gold so we are so grateful.

 

Thanks,

Judy...

 

Judy, did you come up with a solution for your son?

 

I can't remember, are you also homeschooling?

[momtocole1]

Dear MamatoAlex,

 

If I were you I would print out the PANDAS in the school info that I found on the old posts. Let me know if you want me to find it again and forward it to you. I would specifically show them the article that was written by the grown man with Sydenham's Chorea. PANDAS is so closely related to Sydenham's Chorea. The man that wrote that article talked about what it was like to sit still that it was like torture for him. He said that if he were given a choice whether to sit still for one minute or cross a tight rope between two sky scrapers on a windy day he would most definately choose the tight rope. He also talks about why people with SC have to movee all the time, that moving is what stops the horrible antsiness (sp) that they feel.

 

I'm not sure if your son has had the Madeline Cunningham blood work done, but my son's CAM Kinase II number was 165. He was in the upper range of PANDAS on the JNI article. There were only 3 PANDAS kids on the scale in that article that were higher. (I know that there are kids being tested know with numbers much higher, like in the 200's) What I keep looking at is how close our PANDAS kids are to the SC kids range and some are even in the same range as the SC kids.

 

It just makes me so angry that they are putting you through this. Dr. K explained something to me on our consult the other day that really hit home to me. I asked him how we can possibly explain PANDAS to our family. We have some people that don't even believe that my son Ryan has PANDAS, they think he just has a bad attitude and that he is "playing us". Dr. K. said that it is no use, there is no way to explain it to our families (or schools). That they will never understand. He said if your son had a huge gash on his forehead, people would come from 5 miles to hold him and help him. If he then spit in their faces and called them bad names, everyone would say, oh no, he can't help it, he has a head injury. But when there is a brain injury, and that is how I look at it. Our kids have swelling of their brain. He said people can't SEE psychiatric symptoms and because we are raised in an ideaolgical, freudian society we are taught, "If we want to get better bad enough, we can work on it and get better", but these kids can't get better on their own. They can't be talked through this, counseled through this, they can't just "pick themselves up by their bootstraps and move on".

 

Sorry, now I'm venting. Is there any way possible to move him to a private school? Does he love the school he is in? My son was so relieved when I finally took him out of public school, he was scared, but relieved.

 

I also wonder if you could send a letter or email to the school, explaining in more detail about what is going on.

 

Just some suggestions. Once my son's teacher read the handouts that I found on this forum, she told me he should stay home and be homeschooled until after the IVIG. I know that is because he is in a private school. The schools are just so by the book, they just want the money they get from our kids sitting in a seat!

 

My heart goes out to you,

 

Judy...

 

You are so lucky to have such a supportive school and teacher. I am feeling very sad today because our school has not been that supportive. We took our son out for a few weeks due to his immune deficiency. The first thing I got from the school was a somewhat hysterical call from the principal saying the district wouldn't allow us to home school him temporarily. Next I waited a week to get an answer as to whether they would allow it. I finally had to go in to the district office and ask because no one was returning my calls. Then I had to sit with a skeptical assistant superintendant who told me she would approve it, but I had to admit that my child looks fine. Then we waited another week to get a home teacher who continually talks to me about how all her other home school students are too sick to leave the house and are happy to see her when she comes over (my son has been pretty uncooperative with her). The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). Today I got a call from our pediatrician saying the school superintendant called her to ask why he can't go to school, but can go to soccer games. What they don't know is that he wanted to quit soccer, which he's played for 4 years, at the beginning of the season, and we had to work incredibly hard just to get him to participate this year. We wanted to protect our son from illness, but we didn't want to put him in a bubble and allow him to withdraw from everything in his life.

 

Sorry for venting, but this has put extra pressure and stress on me that I just didn't need. Has anyone else had an experience like this with their school?

 

Hi Bronxmom, We are home schooling right now. I am hoping and praying that after IVIG he can return. He is in a very small private school that has teacher that is loving, patient and understanding of this disorder ( I flooded her with documentation on PANDAS) She has a heart of gold so we are so grateful.

 

Thanks,

Judy...

 

Judy, did you come up with a solution for your son?

 

I can't remember, are you also homeschooling?

[mama2alex]

Thanks for responding. I should probably talk to her about this. I think she had seen him do better work in class and was just unhappy with the level of work we sent in. My whole focus right now is on getting him well, and this just doesn't fit in with the school's priorities. Honestly, I'm not sure they believe (or understand) a word we're saying, either about PANDAS or immune deficiency.

 

The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). 't need.

 

Does she know that PANDAS kids have a hard time writing?

 

The uncooperative behavior is probably PANDAS too.

[mama2alex]

Good point!

 

The uncooperative behavior is probably PANDAS too.

 

You think the teacher has PANDAS?

[mama2alex]

We have some people that don't even believe that my son Ryan has PANDAS, they think he just has a bad attitude and that he is "playing us". Dr. K. said that it is no use, there is no way to explain it to our families (or schools). That they will never understand. He said if your son had a huge gash on his forehead, people would come from 5 miles to hold him and help him. If he then spit in their faces and called them bad names, everyone would say, oh no, he can't help it, he has a head injury. But when there is a brain injury, and that is how I look at it. Our kids have swelling of their brain. He said people can't SEE psychiatric symptoms and because we are raised in an ideaolgical, freudian society we are taught, "If we want to get better bad enough, we can work on it and get better", but these kids can't get better on their own. They can't be talked through this, counseled through this, they can't just "pick themselves up by their bootstraps and move on".

 

Judy,

 

I am so touched that you took the time to write this. This is exactly what I needed today - someone who understands! I appreciated everything you had to say, but pulled out the part above because this is exactly the attitude I suspect the teacher and administration at our school has toward our son. 'He's got a bad attitude and he's playing us.' I need to learn to accept it for now and you're right, he would probably be better off at a private school. I was actually planning to tour some this Fall, but all that fell by the way side for obvious reasons. He was supposed to be tested for the gifted program in our district last week, but he was too afraid to stay there without me, so we left.

 

I did meet with his teacher the first day of school and explained PANDAS, sensory integration disorder, auditory processing disorder, etc, and then my husband and I went in a few weeks later to meet with her. I sent her the Today Show clip, gave her the School Nurse article, and offered her a copy of Saving Sammy (which she sort of ignored, so I took it with me when we left). I've also met with the principal and explained everything. I think you're right in this case, they really are mostly upset that they are losing money every day he's not there.

 

I think another problem is that he's been holding it together fairly well in her classroom. He can't stay at afterschool care, I can't drop him off at school (my friend does it) and he doesn't eat at school (he's gained 4 pounds in a month of being homeschooled), but none of this affects the teacher, so I think in her mind, there's nothing really that wrong.

 

Once we have him back at school and through IVIG, I will have more energy to continue trying to educate her. I'll look for the handouts you mentioned and maybe I'll give her Saving Sammy as a holiday gift.

 

Thank you so much for your post! I feel so lucky to have found this group of parents - not sure how I would have made it through the last few months without it.