Why is it so hard for understanding?

[LindaMW]

The principle at my son's school is just so close minded. He just does not get it and really gets impatient with my son when his anxiety or panic flares up.

 

Already today, two weeks back to school, and he calls home with a sore throat. He was in a state of panic and the principle got all impatient with him again. This man has see the worst of the flare ups over the last two years, you would think he would understand somewhat.

 

My frustration is if this was cancer or some other well-known-about illness, people would be understanding and help you through the rough times. But because the main symptoms are psychiatric, everyone clams up and doesn't know what to do or tells you to deal with it. They do not realize that you need understanding more than anything with Pandas.

 

This principle did that to us back in the spring when my son was missing school. He had numerous kids out with concussions and he is telling me I have to get my son back, he was missing too much. Was he telling the families with the concussions the same thing? I don't think so. That's what I mean, not understanding.

 

Sorry to vent and go on about this. I know this is the only place where anyone would understand because they have been down that road. I hope eveyone else is having a good school year and stay healthy as the year goes on. I guess we have to just keep being positive.

 

Linda

[dcmom]

HI Linda-

 

I am sorry you are getting this response from your school. We have had great luck, so far, with our schools. I find it helpful to go in, right off the bat, with a diagnosis letter from our neurologist, and then a letter from the psychologist stating any concerns or accomodations needed. If you haven't brought this documentation in- it is a good idea- like everyone else, I think schools are very afraid of lawsuits.

 

I totally feel your pain about not having this disorder recognized like a physical illness (which- btw- IT IS- thank you very much). My parents have been UBER supportive, but the rest of the family- siblings and inlaws have been somewhat "absent". My girls even both were in the hospital for 4 days (seperately) for pex- no gifts, no flowers, no calls! If they were in for a surgery- you bet their room would have been filled. We could use the casseroles and well wishes just like the next family. I think, having my parents has kept me sane- they totally get it.

 

Hang in there- we are all in the same boat, have the same experiences and feelings!

[cobbiemommy]

We went through the same thing with DS's grade school principal. As I am a former teacher, although not at that school, I was flabbergasted by his ambush in the hallway while waiting to pick up my child. After going home and having a good cry and rant, I made up my mind to have a talk with him and give him my opinion.

 

I went armed with information and explained in no uncertain terms that it was a medical condition; DS had a letter from his doctor. I also explained that the staff took their cues from him (the principal), so that he had to be the example of how others would treat my son. I also explained that my son did not leave early to go party, play sports, or watch tv. He went home to rest, in bed, with only a book for company.

 

I compared his illness to cancer, or diabetes. Which I knew the principal had.

 

I won't say everything was hearts and flowers after that, but it was better. Stand up for yourself and your child, no one else will.

 

Cobbie

[AmySLP]

HI Linda-

 

I am sorry you are getting this response from your school. We have had great luck, so far, with our schools. I find it helpful to go in, right off the bat, with a diagnosis letter from our neurologist, and then a letter from the psychologist stating any concerns or accomodations needed. If you haven't brought this documentation in- it is a good idea- like everyone else, I think schools are very afraid of lawsuits.

 

I totally feel your pain about not having this disorder recognized like a physical illness (which- btw- IT IS- thank you very much). My parents have been UBER supportive, but the rest of the family- siblings and inlaws have been somewhat "absent". My girls even both were in the hospital for 4 days (seperately) for pex- no gifts, no flowers, no calls! If they were in for a surgery- you bet their room would have been filled. We could use the casseroles and well wishes just like the next family. I think, having my parents has kept me sane- they totally get it.

 

Hang in there- we are all in the same boat, have the same experiences and feelings!

 

Same with my in laws...his parents and brothers and sisters in laws, no questions on her status or concern expressed. Thank god for my supportive family, many of whom seem to have PANDAS as well.

[AmySLP]

Pandas research network has the school section under resources. Give the school nurse article....it's older but I feel to them it talks about PANDAS in the education setting, not the medical setting, as they are unfamiliar with. There are many nice resources on there...I gave several to my daughter's school, separate packets for all administrators, nurse and her teacher. Thinking even the specials may benefit from knowing this!

Edited September 7, 2012 by AmySLP

[nicklemama]

I gave the letter to the school describing PANDAS to my son's teacher last year along w/ a cover letter about my son. This year, I sent in the letter but updated it w/ his current info and sent in the PANDAS in the School Setting article along with it. I did this last week and I have a meeting after school on Monday with his new teacher. Last yr, I waiting until the end of the first marking period to tell his teacher. This year, I decided to let his teacher know upfront. We'll see how that goes. His school has known since first grade, when he was diagnosed.

 

I decided to send in some PANDAS info to the school nurse dept in my district this yr, only to find out there are NO school nurses employed in our district. Unbelievable. I knew there was no school nurse at my son's school but I figured there were some school nurses in the district. What a surprise.

 

Oops, meant to add that I got the letter to the school and the PANDAS in the School Setting article from pandasnetwork.org.

Edited September 8, 2012 by nicklemama

[LindaMW]

Thank you guys for all the support and ideas.

 

I have sent a letter to his teacher and the school nurse already is on our side and understands probably the best. It is the attitude of the principal (sorry wrong spelling before) that does it. No matter what I say or do this man will never understand because he does not want to. He knows I will be taking my son out of that school next year and he just plain doesn't care.

 

I am just worried about the rest of the year and hope my son does not get sick to that degree again. We do have a dr that will help and "gets" Pandas, but there is always the worry. If my son has to miss any school again this year I do not think this principal will work with us. It is a private school so there are also limitations there.

 

Thanks again for all the support.

 

Linda

[philamom]

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Edited September 9, 2012 by philamom