School behavior and 504 Plans

[Suzan]

Shoot, the kids got to my post before I was done and I don't know how to fix the title. Can anyone help?

 

I finally got a call from the school counselor and she is going to help me get a 504 plan set up for the girls. DD8 especially needs it but we will do it for both in the event that dd7 gets sick.

 

I get some feedback from dd8's teacher today. She says her main "problem" is that she won't try any new work at school without first asking for help (it's a montessori school so they choose their own "work" every day), she won't try it on her own first. They say she is very smart and is doing well on all her tests so they don't understand why she won't try anything on her own. I know it's her OCD and perfectionism where she does not want to fail and doesn't want to look like she can't do it. Today she told me it was from that but also because sometimes she doesn't understand what needs to be done. I don't know how to help the teachers to work with her in a way that will help her especially to find the difference between not wanting to do it wrong or not understanding what to do. They just think that because she's smart, she has no confidence in herself.

 

Then, she's been talking back to some of her teachers and getting in trouble. Their way of correcting her is to take away her recess or give her "conduct cuts" which I don't know what that does now but I don't think it's helping. She has an overall edge to her that is keeping her in trouble and the typical "stop or we'll give you a conduct cut" makes it worse. Any suggestions for any of this?

 

Susan

[Chemar]

Hi Susan

 

lol kids!!!

 

I can fix the title for you...just let me know what you want it to be

[Suzan]

Hi Susan

 

lol kids!!!

 

I can fix the title for you...just let me know what you want it to be

 

Yay! Thanks, will you title it something like School behavior and 504 Plans?

 

Susan

[Chemar]

all done

 

I left the original title as subtitle so anyone who had seen it before could still find it

 

good that you are getting a 504plan

 

remember that you as parent have the right to call meetings at any time, including in the beginning, to make sure the 504 is correctly structured to help your child and then implemented to provide the accommodations she needs

 

my son had one for his TS/OCD/Crohn's and it made a major difference in helping him at school. I did not hesitate to contact the school to call a meeting with one or more teachers if they were not implementing it correctly based on the accommodations recommended by his doctors and my input. I also insisted that the school nurse be present at all the meetings

[nojo]

I have alot to say about this topic unfortunately. I had the most horrific meeting at school that I have ever had in my entire life. I went in to school for a child study team meeting to discuss 504 eligibility, explain why strep is dangerous for my daughter, ask if they could let me know when anyone in the class is positive (per a doctor's letter), explain to them how it was explained to me that we have an immune deficiency and the live H1N1 virus that they are administering to the entire school is dangerous for us. I made the mistake of going to this meeting by myself. I thought these eight educators would want to help my family in some way. Instead, this is what happened.

 

I was told that they have never heard of PANDAS, so it doesn't exist. I explained this is why my family went to see Dr. Latimer. Not many doctors in our area have heard of it. Then the clinic nurse asked if my daughter got a fever when she got strep. I told her no, and she said "Most children get grumpy when they get strep, that is all that she has wrong with her." I replied "Maybe, but do most children have neurological damage or choreoform movement from strep?" Then, they proceeded to look at the information I had printed out from the NIH webpage. The school psychologist wanted to know if we definitely had group A strep (like does she know about group B or any other strep for that matter?) This continued on, and someone stated this sounds psychiatric, do I have psychiatric problems in my family (yes, someone really did ask me that). I re-read the name, and again explained how her brain swells and can be damaged. I tried to move the meeting along to her immune system being weak. My daughter has always had health issues, and 2 years ago, missed 6 months of school on homebound. They had to send a tutor to our house. When I told them her igg levels are low, and monthly ivig's are being recommended and we need to miss the week after the vaccine, they told me the note from Dr. Latimer wasn't good enough, and in their opinion, exposure to germs would be good for her, to build her up. (They are going to kill my child at this rate). I tried to explain again, she has severe asthma, we have already had a cold, flare up, and strep, and it is only the beginning of October. We are already falling behind. We also have food issues like many of you do. We haven't gained any weight in a year. They had the audacity to suggest maybe offering her a choice of what to eat for lunch. I told them "We are way beyond a choice of foods, I will feed her anything she will eat, and we are giving her nutritional supplements just to get calories in." In the end, they refused to meet again with me to discuss 504 eligability, or for another child study team meeting to review what them immunologist suggested.

 

I am thoroughly disgusted. I wish I had had the presence of mind to stop the meeting, and say "No one here is qualified to diagnose my child, none of you have a medical degree. What are you able to do to keep her safe from germs at school and what modifications can we make for her when she is out." I have had to fight for her to even be allowed to even have a water bottle at school. Bring a medical advocate if one is available to you. If we decide to keep our children in school, we will be bringing a LAWYER to our next meeting. I am seriously considering homeschooling. For the record, I was a teacher(that won regional awards) that retired when I had children.

[faith]

My son has a 504 plan in place for the last few years. This is for his issues of tics/ocd/anxiety....he was tested by the school as is required, so he got it for accomodations due to the tourettes. He is in 5th grade now and is in a mainstream public school. He gets things like extra time for work and tests, and also needs alot of "redirecting" since he gets distracted easily. I am still only in the beginning stages of investigating PANDAS, so this part is not really of issue. However, if it were to come into play, I think that would be a whole other ball of wax. I think on one hand I can understand the school not being cooperative and understanding of PANDAS since it probably is not "on the list" so to speak, of "otherwise health impaired"...so my point is that yes, if you are going to disclose that part of it, I would definitely have documentation and possibly an advocate/doctor with you to explain what is going on with your child. I think a "pre-meeting" would be in order to explain that what you are dealing with is new territory and may require some 'unorthodox' measures. If you think you may have a problem, I would think Tourettes/OCD/ADD, etc. are acceptable diagnosis and any accomodation that are needed would have to be legally adhered to simply because they have an acceptable diagnosis of being health impaired. Maybe getting into the whole PANDAS thing could complicate and stagnate matters. I think it all comes down to how ill the child is and what kind of accomodations they will need. But I think my feeling, and its just my feeling, that the less you have to explain, the better. If you can put it all under the umbrella of TS/OCD/ADHD/Asthma/, whatever applies, than I think you will be able to get whatever you need. Remember, what is in your child's file is private and confidential, it does not need to be explained or expanded upon to anyone else except the school system and teachers that are directly involved with your child.

 

Faith

[matis_mom]

I have alot to say about this topic unfortunately. I had the most horrific meeting at school that I have ever had in my entire life. I went in to school for a child study team meeting to discuss 504 eligibility, explain why strep is dangerous for my daughter, ask if they could let me know when anyone in the class is positive (per a doctor's letter), explain to them how it was explained to me that we have an immune deficiency and the live H1N1 virus that they are administering to the entire school is dangerous for us. I made the mistake of going to this meeting by myself. I thought these eight educators would want to help my family in some way. Instead, this is what happened.

 

I was told that they have never heard of PANDAS, so it doesn't exist. I explained this is why my family went to see Dr. Latimer. Not many doctors in our area have heard of it. Then the clinic nurse asked if my daughter got a fever when she got strep. I told her no, and she said "Most children get grumpy when they get strep, that is all that she has wrong with her." I replied "Maybe, but do most children have neurological damage or choreoform movement from strep?" Then, they proceeded to look at the information I had printed out from the NIH webpage. The school psychologist wanted to know if we definitely had group A strep (like does she know about group B or any other strep for that matter?) This continued on, and someone stated this sounds psychiatric, do I have psychiatric problems in my family (yes, someone really did ask me that). I re-read the name, and again explained how her brain swells and can be damaged. I tried to move the meeting along to her immune system being weak. My daughter has always had health issues, and 2 years ago, missed 6 months of school on homebound. They had to send a tutor to our house. When I told them her igg levels are low, and monthly ivig's are being recommended and we need to miss the week after the vaccine, they told me the note from Dr. Latimer wasn't good enough, and in their opinion, exposure to germs would be good for her, to build her up. (They are going to kill my child at this rate). I tried to explain again, she has severe asthma, we have already had a cold, flare up, and strep, and it is only the beginning of October. We are already falling behind. We also have food issues like many of you do. We haven't gained any weight in a year. They had the audacity to suggest maybe offering her a choice of what to eat for lunch. I told them "We are way beyond a choice of foods, I will feed her anything she will eat, and we are giving her nutritional supplements just to get calories in." In the end, they refused to meet again with me to discuss 504 eligability, or for another child study team meeting to review what them immunologist suggested.

 

I am thoroughly disgusted. I wish I had had the presence of mind to stop the meeting, and say "No one here is qualified to diagnose my child, none of you have a medical degree. What are you able to do to keep her safe from germs at school and what modifications can we make for her when she is out." I have had to fight for her to even be allowed to even have a water bottle at school. Bring a medical advocate if one is available to you. If we decide to keep our children in school, we will be bringing a LAWYER to our next meeting. I am seriously considering homeschooling. For the record, I was a teacher(that won regional awards) that retired when I had children.

 

Nojo,

My heart goes out to you! How dare they? It is so hard, but I agree, you probably need a lawyer and your husband by your side. I am not a confrontational person I would have a hard time putting them in their place... Maybe for the meantime you can put together a letter documenting what went on at the meeting. Then I would write up a very strong letter to the principal or whoever is in charge, with cc to the superintendant or some kind of higher authority. I would attach all the medical records you brought to the meeting, and detail all the credentials of the doctors who have seen/diagnosed your child (and they can contrast that with the school nurse's and the school psychologist's credential, for crying out loud, who are they going to believe???) If you have any lawyers friends, maybe someone can look it over for you and throw in some key phrases that will let them know you mean business.

We homeschool so I am not familiar at all with the school system, but they should be accountable in some way. They can't just say, "we don't believe in your diagnosis and we just won't work with you." That is outrageous! Ask them to take responsibility if anything goes wrong. How can they just dismiss the neurologist's letter? I just don't get it.

On the other hand, just be realistic this could be a long battle, and your energy and resources may be better spent somewhere else. If you are considering homeschooling and have any questions, feel free to PM me.

 

Isabel

[thereishope]

A school nurse is not qualified to diagnosis a child. Oh, that makes me mad. Was she even a nurse or just a health aid? Was a district rep present? I know they are present for IEP's, don't know about 504 plans.

 

 

quote name='nojo' date='Oct 24 2009, 09:18 AM' post='42308']

I have alot to say about this topic unfortunately. I had the most horrific meeting at school that I have ever had in my entire life. I went in to school for a child study team meeting to discuss 504 eligibility, explain why strep is dangerous for my daughter, ask if they could let me know when anyone in the class is positive (per a doctor's letter), explain to them how it was explained to me that we have an immune deficiency and the live H1N1 virus that they are administering to the entire school is dangerous for us. I made the mistake of going to this meeting by myself. I thought these eight educators would want to help my family in some way. Instead, this is what happened.

 

I was told that they have never heard of PANDAS, so it doesn't exist. I explained this is why my family went to see Dr. Latimer. Not many doctors in our area have heard of it. Then the clinic nurse asked if my daughter got a fever when she got strep. I told her no, and she said "Most children get grumpy when they get strep, that is all that she has wrong with her." I replied "Maybe, but do most children have neurological damage or choreoform movement from strep?" Then, they proceeded to look at the information I had printed out from the NIH webpage. The school psychologist wanted to know if we definitely had group A strep (like does she know about group B or any other strep for that matter?) This continued on, and someone stated this sounds psychiatric, do I have psychiatric problems in my family (yes, someone really did ask me that). I re-read the name, and again explained how her brain swells and can be damaged. I tried to move the meeting along to her immune system being weak. My daughter has always had health issues, and 2 years ago, missed 6 months of school on homebound. They had to send a tutor to our house. When I told them her igg levels are low, and monthly ivig's are being recommended and we need to miss the week after the vaccine, they told me the note from Dr. Latimer wasn't good enough, and in their opinion, exposure to germs would be good for her, to build her up. (They are going to kill my child at this rate). I tried to explain again, she has severe asthma, we have already had a cold, flare up, and strep, and it is only the beginning of October. We are already falling behind. We also have food issues like many of you do. We haven't gained any weight in a year. They had the audacity to suggest maybe offering her a choice of what to eat for lunch. I told them "We are way beyond a choice of foods, I will feed her anything she will eat, and we are giving her nutritional supplements just to get calories in." In the end, they refused to meet again with me to discuss 504 eligability, or for another child study team meeting to review what them immunologist suggested.

 

I am thoroughly disgusted. I wish I had had the presence of mind to stop the meeting, and say "No one here is qualified to diagnose my child, none of you have a medical degree. What are you able to do to keep her safe from germs at school and what modifications can we make for her when she is out." I have had to fight for her to even be allowed to even have a water bottle at school. Bring a medical advocate if one is available to you. If we decide to keep our children in school, we will be bringing a LAWYER to our next meeting. I am seriously considering homeschooling. For the record, I was a teacher(that won regional awards) that retired when I had children.

[thereishope]

Can you get a physician to supply a letter with an official diagnosis? That would help a lot.What I have done is contacted all teachers, slp's, etc that will come into contact with my PANDAS son and requested that they tell the office (or myself) if they have strep. I have also had a long sit down mtg w/ his teacher to explain what has happened in the past and what to look out for. To be honest with me and tell me if something questionable comes sup. Don't give him second and third cances before telling me. I have talked to the principal and asked to be told if a child in either of my chilldren's classes has strep. Since the beginning of the school yr I have gotten 2 calls. They will call only if the parent specfically says "strep" when they call in the absence.. Technically, I don't know if they are allowed to tell me anything but they do. I say that because since H1N1 surfaced, the school district has said, via email to all parents, that they cannot disclose what grade H1N1 has been reported due to privacy laws.

 

My son has an existing IEP. PANDAS is in his medical history. They never had me supply proof, but I had his slp witness it last yr & could back me up on it. I could not get it "officially" added since the dr will not provide a letter stating diagnosis (that's a whole other story).

 

If something happens and you cannot get a 504 or anyone doesn't want to pursue a 504 specifically for PANDAS, if your child has issues in school, maybe you can be creative and ask for an eval of that issue. Meaning, if they have sensory issue due to PANDAS, tell them you want a sensory eval. Just drop the PANDAS add on if you think it would open too much of a can of worms. Same thing for OCD. If they have OCD as a result of PANDAS, get the OCD diagnosis and pursue an IEP or 504 for OCD. The most important thing is your child gets the help they need,the space they need, etc.

[faith]

I agree with Vicke, that's what I was trying to convey, just have dx of symptoms, for they are disorders on their own, OCD, Tics, Anxiety, immune compromised, etc.

 

 

 

Faith

[peglem]

I agree with Vicke, that's what I was trying to convey, just have dx of symptoms, for they are disorders on their own, OCD, Tics, Anxiety, immune compromised, etc.

 

 

 

Faith

Yes, schools base modifications on individual student needs, not on the diagnosis, so whether they agree on that dx or not is immaterial.

[mama2alex]

I am so sorry you had to go through that, and most of all that you haven't been able to get the support you need to protect your daughter! I've found our school personnel to be very narrow-minded and rigid, and as my husband says, they see the world as "flat." I think a diagnosis that involves psychiatric symptoms caused by a common childhood illness is just too much to comprehend for some people.

 

We tried to get a 504 plan as well, but were completely shut down. When my husband told our principal about PANDAS at the beginning of the year, she suggested we get a 504 plan. But when I tried to schedule the meeting a few weeks into school, she said we weren't eligible because it's not affecting his schoolwork. In the meantime, he won't eat at school due to fears and aversions, the only way I can get him to attend is to drop him at a good friends house every day, if I do need to drop him off myself, it takes 2 - 4 hours, he's been sick 4 times in 4 months and is in the process of getting an immune deficiency diagnosed. We are considering just homeschooling him temporarily - our school district's policy allows for this based on medical need, but we'll see if they fight us on that too.

 

It's all so frustrating.