Meeting with School Counselor & Teacher to begin 504 Process - see

[Teri]

Good morning friends,

 

On Friday we will be meeting with the School Counselor & Teacher to begin the 504 Process.

Dd- now 7 is in 1st grade. She is PANS w/ LYME & Bartonella. When healthy she is fine and does well.

When in a flare we see tics, hyper activity, extreme mood changes,anxiety, regression, medicine battles, and OCD etc..- you guys know the drill.

Dd is a big rule follower and works very hard to be perfect at school. In school they have really only seen assorted tics & compulsions which they usually tell me that she's ok bc no one really notices them. However, dd notices them and spends an enormous amount of energy trying to hide them. We thought it wise to be proactive and have a 504 in place so that she has support if she needs it. School has been very supportive thus far but I am not really sure they "get" PANDAS. To be honest I am not even really sure what to ask for. Any advice is welcomed! TY in advance!

 

Teri

[pr40]

we did not look into 504 and I would like to ask you to explain what you expect from it.

504 is there to prevent discrimination. what kind of discrimination do you think our kids can suffer? (I think I recall an earlier post on the same topic.)

Is it in grading? Status?

or are you after, really, educating teachers about PANDAS? but then you say they don't get it.

we are in a very similar situation or rather were then we left local public school for a small private school where understanding peculiarities of each student is a norm rather than exception.

In short, if I understand what you are trying to do, I am skeptical that you will have any results.

I am, however, not sure that I do understand all of the options.

Edited September 24, 2013 by pr40

[LNN]

I've never looked at a 504 as a discrimination issue. It allows for accommodations (which I learned is a word with legal ramifications) in the classroom and curriculum. the 504 still holds a child responsible for learning the same material as peers. But we've used it for 1. validate our son's illness in the eyes of skeptical or unaware teachers and 2. a way to reduce homework demands when needed. I initially feel into the trap of trying to educate about Pandas (before we had a 504 and after), but I now only focus on getting my child what he needs to make it successfully thru the year.

 

For tics, we wrote in that our son be allowed to take unlimited bathroom breaks as a way to relieve stress and go outside the classroom to have a tic-fest unseen. This also helped with urinary urgency. This was an important accommodation, since some teachers wanted to limit him in fear he was using it to avoid work or was going to miss instructions (had to make them see that if he was obsessed with having to pee, he wasn't listening to them anyway). Some teachers also allowed him to move his seat to a private desk in a quiet part of the room when they were silent reading and he might be humming or be easily distracted.

 

We wrote in that he could have a water bottle at his desk to avoid the use of water fountains.

He could take extra days in completing homework if needed or do only half the math problems if he showed comprehension

He could dictate writing assignments to me and I'd type them when handwriting was too difficult.

He would not be marked down or made to re-write something due to poor handwriting

If he tested poorly, his teachers were asked to test verbally and if he could demonstrate understanding, adjust his grade upward to match his comprehension, not solely his written output.

He was given seating preference keeping him away from doors or areas of "traffic" where he'd be more distracted. He's generally seated in front or among girls to reduce distractions (even he admits this helps a lot).

Teachers are asked to check in with him frequently for comprehension to make sure he doesn't get so lost that he has no clue.

No timed tests.

 

As for not "getting it" - they may never, or they may grow as they work with your child and see the sawtooth changes first hand. You can't get it until you see it, IMO. But it's not their job to get it. It's their job to deliver new material in a way your child can process and adopt it. Sure, it may help them with future kids. But I've stopped worrying about how they view OCD. They just need to accommodate it. His teachers have asked "how will we know when he's in a flare and when we should hold him to the same standards as everyone else?" There are of course signs you'll see - handwriting, impulsivity, temper, etc. But what may be an increase in symptoms for your child may still fall within the bell curve of "normal" for the class. Lots of boys are hyper. How does a teacher know in October whether the bouncing around my kid is doing is normal for him or an increase? She doesn't. So I've told them "when you realize at the end of the day that you've said my son's name 100 times today and none of it was in a good way, call me." This has been far more helpful to them than my trying to educate them on OCD, tics, et al. But we've used a 504 for 4 years now and it's been helpful.

[smartyjones]

LLM is such a wonderful source of info, she has given great advice.

 

you may want to check out a post of mine from last year -- it's in the school advice section when you scroll down --' difference btwn 504 and IEP ' from feb, 2012. I think most parents with kids with 504s don't know this -- I didn't, and I'm certainly of average intelligence and consider myself very proactive.

 

one of the biggest mistakes I made was trying too hard to educate about pandas. people are stunned and amazed they have never heard of this and are curious and interested, which so lays the groundwork for us to go on and on and on -- because it is so stunning and amazing. however, it's not the help our kids need in this setting. you can do education of school personnel -- just in another venue, but not under the premise of your specific child's 504 or IEP.

 

I would suggest getting your mind straight that you are there to help ensure your dd gets what she needs to get through her days most successfully. we first think that it is better if the school personnel understand the 'why'. now, I don't think it is - they need to understand the 'what'. now, I think a simple 'medical infection that drives these symptoms - we are working medically to help get her back to health' is plenty and the rest should be while we are working on that, what they see, what she does, what she thinks is a problem and what she needs.

 

we do have docs letters on file for ds -- one for pandas and one for anxiety - nos. if you could have a simple docs letter, I would suggest it. it just ups the validity for school personnel that they are in fact, dealing with a medical issue.

 

there are several categories of 504 -- one is a 'sleeper' like status that the child does qualify but is in remission and does not currently need the accommodations.

 

one other thing I hadn't previously understood, why wouldn't they want certain accommodations. looking on the bright side, as really for the child, not just to not do something extra for them -- they are legally required to provide the accommodations. so, if your child has a scribe written in the 504 but is in a healthy state that she can really write well enough to do it herself but would need that only in a flare - they must legally have a scribe for her and cannot/should not allow her to write for herself. here is where you would need a savvy 504 writer to walk that balance -- not all of them have that confidence to be sure they are correctly complying in the writing of it. they may be, as in our case, rightfully so, concerned to have too much written to allow for too much accommodation. I, stronger than the school personnel, don't want my ds to know his accommodations. for him, I worry of it becoming a crutch. another child may not have that issue.

 

ie --my ds's says "provide advanced warning for scheduled changes and sudden loud noises." so -- for this year, with fire drill practices, someone has discussed with him that it was happening and gave him options of going out early, headphones,etc. he chose to stay with the class with nothing. he did fine. however, my school is really on the ball. somewhere not so aware, it could fall through the cracks and the 'advance warning' could be once the alarm goes off, 'oh yeah, are you okay'. they may not be confident of what the 'advanced warning' is -- so they may have no accommodation, or leave classroom prior to loud noises and not know how to work a middle ground. yes, they should be able to, but I think the reality is that things are not always as they should be. so they often work from a CYA attitude.

 

unfortunately/fortunately, I think a lot of it comes down to the school personnel. we have been in our public school system 3 years and experienced the worst and the best it has to offer. luckily, in that order. the first school, although a 'wonderful, blue ribbon school' was a disaster. they had no ability to understand, even with 2 docs letters, why he seemed fine 90% of the time. he ended up on home teaching for 7 months. we are now in a charter school, which has fabulous personnel and a good respect for kids individuality.

 

there is a great list of accommodations for anxiety -- on worrywisekids.org - tamar chansky's website

 

good luck. keep us posted on how it goes.

[airial95]

We have 504 plans for both children. LLM is spot on - a 504 plan provides accommodations in the classroom that can help the child succeed with their academic goals in the least restrictive classroom setting - however, these children are not getting special services (speech therapy, para professional, occupational therapy, special ed services, etc...) Those children have an IEP - Individualized Education Plan. My son moved from an IEP to a 504 when he started K. His accommodations had already been time tested, and the only service he was getting was placement in a EELP (Early Exceptional Learning Program) Pre-K. (Basically a special ed pre-K). He struggled a lot in day care, and it was determined he needed a special setting to help him learn to adapt to school. By the time he went to K, he no longer needed those special services, but still needed several accommodations to keep him functional in the classroom.

 

We have all of the items that LLM posted, as well as a special "chill out" spot in the classroom that he can got to at anytime (doesn't need permission) to calm and relax. It is simply a small comfy chair with some books. He is already used to it (they used it for 3 years in pre-K for him), and it works. But we also have it written in for him to go either to the vice principal or head of after care if he still needs less stimulation/anxiety too high. These two individuals were chosen because he responds very well to them. We also have a provision that parents in the class be notified about an immune compromised child and to report to the school when their child (or anyone in the family) has strep. (Both of my kids are strep only triggers, but I know others who have modified it to ask that parents report the specific reason for the absence). We also have attendance accommodations (can miss more school than most), the ability to work from home as needed, and also the ability to work from home for a period of time if there is excessive strep in the classroom. They also have written in the 504 more frequent washing of desks, cleaning the classroom than usual, and very limited sharing of community classroom supplies (we provide a second set of EVERYTHING just for our kids) to prevent spreading germs.

 

My daughter, who suffers from severe separation anxiety, is allowed to have an escort (one of her favorite teachers) to the classroom, or if it's bad, can hang out in the clinic until the anxiety passes, and then is escorted to class. She's in 2nd grade and this accommodation has worked fairly well.

 

Just remember, the accommodations have to be related to how they function in the classroom and academic performance.

 

I limit my "education" on PANDAS initially as well. Before the teachers even meet my children, I provide them with a simple 1 page cover letter that briefly (3 sentences) introduces PANDAS, and then I focus immediately on how it impacts each of them in the classroom, and what they may expect to see. I also briefly mention any treatment protocols that are undergoing that may affect attendance like IVIG), and ask them if they see any thing out of the ordinary, to err on the side of caution and notify us so we can make the call to go into the doctor or not. I direct them to the 504 for more specifics. To that, I attach a 1 page "resume" on my child that shares their likes, dislikes, strengths, weaknesses and tips specific to them to help them cope in school. (My daughter's first grade teacher last year liked it so much, she has adapted it to use in her classroom as the 1st week of school "homework" for parents.)

 

Then, I only include 2 other attachments, the School Nurse Journal "PANDAS in the school setting" article (a bit old, but still a good resource specific to the classroom - can be found on Pandasnetwork.com) and the OCD in school article from the IOCDF.

 

I offer them more info if needed, and usually after they see my kid's first flare, they ask for more info.

 

We are lucky, our school is great, our school nurse has seen other cases of PANDAS in her previous schools, and the principal is very interested and engaged - always pulling me aside at random events to explain to other teachers/staff what PANDAS is. My son's teacher got it immediately after seeing his first "episode" (it was the week before his 3rd IVIG, and the same day his sister was at the doctor with +strep test). When I met with her about it a few days later (thinking I was going to need to explain more), before I could say anything she said that "it was almost like a different kid, like he wasn't even in there, his eyes changed, face changed and the "real" Broderick had just checked out." I was so happy she could see it so clearly.

[smartyjones]

teri -- sorry, I have another thought -- be careful what you wish for, right? you've hit one of my favorite topics.

 

do you and the school agree that she needs a 504, or have you requested the meeting and not sure if they are going to agree? you say 'we thought we'd be proactive' -- do you mean just you or you and the school?

 

the wording for a 504 is a student with a disability the 'substantially limits one or more major life activities'. a diagnosis does not automatically qualify for eligibility.

 

I believe your first meeting will be to determine if she does, in fact, qualify.

 

if I remember correctly, our first year, we knew we were doing a 504, so did the qualify and the writing of it in the same first meeting. the next year, b/c they had to fix the horribleness of the first year, we did a qualifying meeting to determine IEP or 504 to determine tests and then in another meeting did the 504.

 

you need to be sure if you are having simply a meeting to determine qualification, where they could say in their opinion, she does not qualify or also a meeting to write the 504.

[airial95]

Smartyjones makes some excellent points too. The school could care less about the medical process (inflammation, antibodies, blood brain barrier, etc.), the medical treatments (abx, IVIG, PEX, etc...) or for that matter all of the complexities of the triggers. Keep it simple: autoimmune disease, causes neurological symptoms - PERIOD. And then focus on how it affects his abilities in the classroom and education.

 

They really don't care about anything else.

 

The other one is on the "sleeper" status. We too have not told our kids about any of their accommodations other than those they need to know about ("chill spot" for example). My daughter has no idea why a teacher sometimes escorts her into the classroom - but there is someone watching out for her specifically at car line and they jump in if they see her struggling.

 

We have it in our 504 that these accommodations are to be implemented if the parent (or doctor) gives formal notification of a flare (this can be based on discussions with the teacher if she is seeing a rise in symptoms that may not be evident at home), and if times of high strep rates at the school - which is triggered by the school nurse. This has also worked well for us too. But like Smartyjones said - it also depends on how responsive the school is in general.)

[bigmighty]

Our son is doing well so does not have many challenges at the moment. Here is the letter our doc put on file with the school last fall. Obviously, you can drop into this format whatever accommodations your child requires. When there's a clear and obvious medical issue, most peds are more than willing to allow you to draft the letter to the school and forward it to them to print out on their letterhead and sign. Along with other documentation, this did, by the way, qualify DS for accommodation on the SAT and AP exams.

 

Date

 

To Whom It May Concern:

 

Child X is a X year old boy (DOB XXXXX), who is well known to our practice. In Month, Year, Child X received a definitive diagnosis of PANDAS Syndrome by the National Institute of Health in Bethesda, MD. His NIH diagnostic team included Dr. Susan Swedo and Dr. Paul Grant.

 

PANDAS Syndrome is an autoimmune disorder that causes inflammation of the basil ganglia area of the brain. This results in behavioral, motor, and neurological challenges that are sometimes severe. Currently, Child X displays characteristics of motor deficit/hypotonia, and has significant struggles with math facts and rote memory. It would be appropriate to offer any accommodations that might assist him in his school and/or testing environments. These may include, but not be limited to: calculator use when calculators would not otherwise be permitted; the opportunity to use a keyboard on written assignments; modified PE assignments, as needed; and additional time on tests.

 

If you have any questions, please do not hesitate to contact our office at the above number. Thank you for your consideration in assisting Child X in a successful academic experience.

 

Sincerely,

 

Pediatrician

[nicklemama]

Timing is everything. My dh and I had a meeting with the school principal, resource teacher and classroom teacher today. My son performs above grade level, so no IEP needed. Over the 3 yrs of his diagnosis, I have kept the school apprised of PANS by giving them appropriate publications and talking with his teacher and the principal. Today was the first time we've sat down together since his diagnosis in 1st grade. He's older now and the expectations are increasing but his emotional/ social development is still lagging some and it becomes more apparent plus he does have some executive functioning issues like remembering his lunch bag, turning in papers ,etc... We explained to them how things have been going, treatments, etc....and asked for some accommodations.

 

We found out a great deal about our son and what accommodations have been out into place automatically without our formal request. We are lucky our school is so proactive.

 

Here are the things we asked for and were granted today

 

1- alert letter sent home to each classmates parent

2- reminders of frequent hand sanitizing ( we asked for just our son but it's going to apply for every kid)

3- daily sanitizing of his desk and the desk in the adjacent room where he receives science instruction from another teacher)

4- allowance for fidgeting (found out every classroom now has fidget toys and every teacher received instruction on use)

5- develop and implement a hand signal for distress with classroom teacher

6- designate a safe place to go when signal is given

7- no loss of recess or PE for behavioral or academic infractions

8- seating away from high energy/distracting students( they cause his anxiety to ramp)

9- allowance for excessive absence (found out this has already been implemented, I wondered why I never got the letters last year, principal withheld them)

10- parental input on teacher selection

 

We talked about future possible needs such as when the hand writing requirements increase and a few other things.

[qannie47]

We too have been fortunate that my ds's school "got" Panda's right after they experienced an episode, a very big one, firsthand. I guess I was lucky that my ds had already established a baseline behavior at school that was completely opposite of his Pandas persona. I believe, after it took 3 adults to get him thru the day, there exact words were, "There is not one person in this school who believes that this is a behavior disorder, or a family problem, it is clearly medical". I have found this thread very interesting regarding the 504. So far school seems to want to work with me, however, what happens when a 1-2 day wax/wane turns into 2 weeks. UGH... I hope I don't have to test his school in this way to see how they hold up. It is good to have this information, hope I never need it. As usual, great information.

[nicklemama]

My son has actually never had issues at school other than having trouble with a couple of kids. He is easily bullied and has a hard time around kids with ADHD that don't know boundaries. The school has known about his illness since first grade (now in 4th)and I send info and talk to his new teacher every year. They've been proactive and we have just formalized things with a meeting. It came about when his new teacher held him back from recess last week for forgetting his spelling homework. Also, I wanted a letter sent home to classmates and the principal balked so we felt a meeting was in order. It lasted an hour and we both came away very impressed.

[airial95]

nicklemama, be cautious when the school tells you that because he performs at/above grade level an IEP is not needed. The qualifications for an IEP are not strictly tied to performance. It is whether or not special services are needed for them to achieve their potential/goals academically.

 

We were initially given that line from our district when my son first transitioned to the school district when he turned 3. Still slogging through his initial onset (at 19 months, but untreated/diagnosed until 26 months old) his 2 1/2 year old developmental assessment still had him at average/above average. So we were told no IEP was needed, we pressed, and they initially gave him 2 hours /week with an ESE teacher sent to his day care. Within 3 weeks a new meeting was called because the ESE teacher clearly saw that more was needed. For this meeting, we brought an advocate with us - when they tried to push back even against their own ESE teacher who had observed my child using the same line - our advocate very quickly reminded them of the rules. She told me that it is very common for them to try to steer parents away from IEP services because they are preforming adequately academically. Then she gave us this example, a child who has Cerebral Palsy, or Spinal Muscular Atrophy, or is deaf or blind, may be a gifted student and perform exceptionally academically - but they are still entitled (and required) to have an IEP to accommodate their medical conditions. And it is no different than PANDAS. She said all to often parents listen to what their school district is telling them without questioning what the laws really say.

 

My son got his IEP - was in a special ed pre-k for 3 years, which did wonders for him. His last developmental assessment at the end of last year scored him exceptionally gifted (verbal abilities equivalent to a 17 year old). He's now doing well in a regular K.

 

Both of my kids have 504 plans, and we have the same situation as you do with a great school that gets it and is often very proactive (they implemented almost all of the accommodations for my daughter automatically, and came up with a few of their own, at my first sit down with the teacher and principal for my daughter in K, and we didn't even formalize her 504 until last year.)

 

I'm happy your child's needs are being addressed, I just share my story as an FYI and heads up to other parents who may be told the same thing.

[nicklemama]

Thanks. I don't know what they could offer him in an IEP. He doesn't need services. He actually functions pretty well at school. They told me yesterday he does not stick out in a crowd and they've got tons of kids who need accommodations very similar to his. If he's going to have a problem, it happens during unstructured time like lunch, recess, bus, walking in line. My friend, who is a special ed teacher, told me and it was my understanding by reading online that IEPs are for academic issues and 504s are for accommodations for medical conditions.

 

I was told he was the only one with PANDAS in his school. I politely informed them there were others unidentified. His school should have approx 15 PANS kids based on enrollment. I told them their EI class probably most certainly had a few, along with kids with tics, bipolar, other difficult kids and some like our son, who might be flying under the radar and their parents either haven't disclosed it or are having trouble at home and are unaware of what's wrong.

[airial95]

Our advocate differentiated the IEP vs 504 difference related to services needed vs. accommodations. For example, if a child for what ever reason needs a paraprofessional to make it through the day, that would be a service, speech therapy, occupational therapy, full time or part time placement in an ESE class, etc...those would all fall under an IEP.

 

Things like extra time for assignments, unlimited restroom visits, fidget toys, special chairs for ADHD kids, etc... those all fall under 504 plans.

 

My son no longer needed the placement in a special ed classroom by the end of pre-k, so they closed out his IEP and we did a 504. Because he already had qualified for an IEP - he didn't need to qualify again for his 504. Because many of the accommodations were already in his IEP as "strategies" to achieve his 504 goals it was almost pre-written for us.

 

IEP's are usually referenced in context with developmentally delayed children or kids with a learning disability which has a far more academic aspect, but is specifically for children who need special services for any developmental or physical medical condition.

 

A good friend of mine has a daughter with SMA (spinal muscular atrophy), she is in the gifted class at her school, but still requires an IEP because she needs special transportation services, and an aide at certain times of the day to assist her with some class transitions, she is accommodated in an ESE setting during PE (working on her gifted work), and her aide also is there to assist her in some personal physical matters (toileting, etc...) After our advocate explained it, it seems I started to see/meet lots of folks whose kids had IEPs for non-academic reasons.

 

Up until a few years ago, our school district didn't do EPs (educational Plans for gifted students) until 3rd grade. If there was an exceptionally gifted child younger than that - they got an IEP because there was no other way for them to get the gifted services. They changed that a few years ago.

[Teri]

Thanks folks for all the input ! Our primary reason for implementing the 504 is that I want something formal that documents & validates the condition. We openly shared our situation with the Principal and she was very responsive to our concerns. She assisted us with appropriate class placement for Kindergarten and also personally placed her with the current 1st grade teacher. We really feel like the school knew our kid. They cheered her on when she was finally able to muster up the courage to ride the bus and order lunch for the first time ( she also has nut allergies). However, the Principal has just retired and the Vice Principal leaves 10/1 for a new job in another district. The school counselor is good but very young and only I. Her second year. With all the change we felt it wise to have something formal in writing should the need arise.

 

As for modifications, Dd is very bright and able to hold her own! She is however, a perfectionist and very aware of when she is not perfect. When she is in a flair .... And it will happen ... I want her to also be able to take a break. The pressure and anxiety of holding in tics will make a school day very difficult for her. Sanitizing desk and hand washing frequently is a must. She already tells me they have to go from recess to lunch - no time to wash hands. Stamina is also an ongoing issue - she is always exhausted. As homework increases, it may be difficult for her. The water bottle issue - I have already told her that she is not allowed to drink from water fountains. She brings one every day and appears to have access to it.

 

Educating the teacher and counselor seems like a daunting task and I am going to take your advice on this one. That will not be my focus because it's not my job to to do that. It's only my job to increase your awareness ... and to discuss with you how that impacts my kid in school. Last year she had a big flair in the Spring - we saw a huge increase in tics / compulsions. When I emailed the teacher to tell her what we were seeing at home and inquire did she see anything at school - she said "Oh yeah we are seeing some of that too."

I volunteered at the school Field Day shortly after and was so upset by what I saw. My Dd's new tic or compulsion was to do like a half squat with her legs. I watched her and she literally did it every few seconds. Yeah - I want to know if you see something odd that she is doing before it snow balls. I don't think she will need many modifications unless she is in a flare.

 

Just to clarify - dd 7 is on daily doses of multiple (3) antibiotics. Still feel like we are constantly beating back some kind of "trigger".

We are treating for PANS/LYME/Bartonella .

 

Thanks,

 

Teri