Q's about 504 plan and school in general

[Topaz1968]

OK, so my DS is starting 4th grade in a few days. I have been his advocate since pre-school, getting him services for speech, etc. I am also a teacher, so I know a little bit about 504 plans, but not much.

 

Long story short, his diagnosis last year was for Tourette's which our Panda's doctor thinks may not be the case anymore, as we are looking into the fact it could be Pandas - my son just recently had blood work done, so we are still awaiting results. However, my son has most of the symptoms and has now been on Augmentin for about 3 weeks now.

 

I fought last year to get him help, but the teacher said he showed no signs of tics, etc. in class and even though he has trouble with certain things, an IEP was not warranted, let alone a 504 plan. At the end of the year he rec'd a D in writing and a C in reading - I was not pleased and a little upset that this could have been avoided if he had gotten the help he needed.

 

I now have a note from the neurologist stating he has Tourette's and should get a 504 plan. I do not have an official Pandas diagnosis yet, so I am not sure how to approach the school now. I know his incoming teacher is very nice, and I know the Principal very well. We are getting a new school Psychologist and Social worker due to restructuring in the school system, so I am kind of starting from scratch again.

 

I want to schedule a meeting with the school as soon as possible, and have gotten some advice from other professionals, but I would love some feedback from others who have had to deal with the school and what I should tell them.

 

Thanks

[MomWithOCDSon]

Honestly, I'm not sure that having a PANDAS diagnosis would help your cause much in securing a 504 Plan, as it is still so widely misunderstood. While you DO want to make sure the school is aware that infectious exposure could contribute to your child's condition and behavior, so notification is key, the Tourette's diagnosis should successfully assist you in getting a 504 Plan in place that will help him through the term.

 

We had a 504 for our DS for 3rd through 6th grades and moved to an IEP last year. I would suggest that you go into a 504 Plan meeting with: 1) a brief explanation of Tourettes (especially those pieces that are non-tics oriented and therefore easy to miss by folks who have little or no experience with it); 2) a brief explanation of PANDAS and its behavioral manifestations (you can explain that your child is currently being treated for this, as well); 3) a list of the ways in which your child in particular manifests these disorders; and 4) a list of the specific accommodations you would seek for your child (extra time on assignments or tests, verbal quizzes rather than written ones, alternative assignments when appropriate, permission to use a computer for written assignments rather than pencil and paper, etc.).

 

As you probably know as a teacher, the aim of the 504 is to bring the child to a level playing field with his peers, but not to give him unequal advantages. I think for some schools, it is a fine line, especially when the illness manifestations are behavioral and they can just decide that the child is therefore, willful, spoiled, destructive, or a combination of those, rather than ill. Just hold your ground, politely but firmly, and seek a sympathetic or caring set of eyes in the school staff around the room in the meeting; having an ally "on the inside" can definitely pay off!

 

Another thought that occurs to me, also, is that you might illustrate for the folks present how granting your desire accommodations with benefit the school as a whole, and not just your child. Frankly, I think that's why my DS was granted his 504 in the first place: state-wide testing begins in 3rd grade for the No Child Left Behind laws, and I think they were afraid that if he was not granted untimed testing, his otherwise stellar results might drag down his class' results. So it was to their advantage to give him that 504.

[Jengels]

My ds10 was finally granted a 504 meeting this year after a horrible struggle all through 4th grade. We didnt get a diagnosis until midway through the year and at that time I had no idea what PANDAS really was and we had classroom management problems in addition to the teacher being a screamer. Absolute nightmare of a year! Anyway, I thought ds would calm down over summer but we got worse, so at my last visit to ped neuro, I got a letter from them to the school stating that he had PANDAS with OCD. The letteer stating some of the symptoms we were experiencing and how they affected his abilities in class and with homework. That is when they granted us a 504 meeting. I cried tears of gratitude. I felt like they thought I was making it up last year. Even though the teacher witnessed the tics, mood swings, bad handwriting, lack of focus, drop in grades ect. I practically lived at the school last year because I knew this wasn't right. My son had always been a/b and mid year was c/d/and even f's. Not acceptable! Yet they wouldn't listen to my pleas and just kept telling me he didn't qualify for testing. Ugh.....I was beyond livid. To sum up, with your letter from neuro that should be good. That is what finally got them to listen and accomodate my ds.

 

I wish you all the best this year.

 

PS, also we were new at the school last year. We didn't have the benefit of them knowing our family. The fact that you know the principal is awesome. Good luck with it all.

[mkur]

TS can be covered by 504 or SpEd. If you're child needs more support in middle school, you may need the SpEd label. TS is now listed as OHI.

[tpotter]

What do they mean..."Let alone a 504 plan?" That's the most absurd statement I've ever heard (well maybe not the MOST absurd, considering I've been fighting our school district for 3 years, and have a mediation meeting next week, while my son refuses to return to school :-0.

 

Anyway, just a quick explanation of the 2: 1) IEP is an Individual Education Plan, which means that he qualifies for special education under one of 7 different qualifiers (your son would probably Other Health Impaired or OHI, and/or Emotional Disturbance (ED), but I would highly recommend you get at least a primary qualification as OHI.) Your child should get a complete special education evaluation in all areas, and what really concerns me are those low grades in writing and reading, particularly if they dropped. It also indicates that the child's functional level is decreasing, and that the medical dx is causing him to not be able to learn up to his level...which is why he MUST be tested completely...and not just for Learning Disabilitiy, which most of these kids don't have.)

2) A 504 is where the child doesn't qualify for special education, but the school itself recognizes that he is struggling (for whatever reason, such as handwriting, reading, math...whatever), and puts a compensatory plan in place. It is a WRITTEN plan, and also covers you legally if they aren't doing what they have agreed to do (which is why our school district fought our 504 plan that we arrived with 3 years ago, and why are now in and out of legal battles with them, because his grades dropped to F's, and he got horrendously ill.) Most school districts will jump at a 504 plan, because they are relatively easy to incorporate, and both a 504 and IEP can be modified whenever necessary.

 

So, my recommendation, send them a letter immediately (which starts the legal countdown to when it has to be determined by), and tell them you want your child evaluated for an IEP (don't mention the 504 plan yet, because that comes later, if he doesn't qualify for the IEP). Tell them you want a complete evaluation (cover learning and ED, because these children have a lot of anxiety and stress, and this contributes to their disability.) If you aren't getting anywhere, I would definitely consider getting an advocate to come with you. You should be able to get a list of qualified advocates (not lawyers) from your state department of education.

 

PM me if you have any questions. Hopefully your battle won't be as bad as ours, but honestly, I've never seen anything like ours, and I've worked in school districts for many, many years. So, I suspect with knowledge, you should probably be fine (unless of course you live in my school district, and if that's the case, let's just join forces, and go after them together :-)!!!!

 

Seriously, though...good luck.

[Topaz1968]

Thanks to everyone for the great advice. I found out yesterday that he is going to have 25 kids in the class due to restructuring of our schools - so it is a mess. I am not happy and will hopefully be able to schedule a meeting right away.

 

I will make sure to be prepared with all the info I need.

 

Thanks again

 

Rachel