Newly diagnosed son and major trouble getting the school's help

[Angela111]

My 15 yo son was diagnosed with Inattentive Type ADHD in April (not quite 5 months ago now). He has struggled with grades since 4th grd.  Despite my quarterly begging for help and talking to every teacher, every year about it, he was never even refered for evaluation ("child find" didn't 'find' him!).  Finally, during the 3rd qtr conferences last school yr, a teacher asked if I'd ever heard of a 504.  She didn't know enough to help me with questions but I went straight to the school psych. with them!  She told me (quote!) that "traditionally, students need a medical diagnosis for a 504."  So, we did an informal "intervention team mtg" incl. my son but by this time, there was only about 6 wks of school left. I decided not to waste any more time and consult his pediatrician re: ADD who did diagnose Inattentive Type ADHD.  I informed the school psych that very day & said he now had a diagnosis, could he get a 504?  Her reply (again, quote!), "No, typically you'd need TWO diagnoses. Let's just see how the last few wks go on the suggestions we made."  In the mean time, we got him on a med. & grades went up, school ended for the summer.  4 wks in on med, very frequent vocal tics show up resulting in another dr appt.  in which I inquired about the tics possibly being present since about kdg. but dr said no, it was med so he switched his meds & ordered a 2 wk break from meds (to give the tics time to subside). The tics lessened but did not go away.  Started new med, 3 doses in and tics are back with a vengence.  Back to the dr., again asked about minor tics previously and if meds could be exaccerbating an underlying condition.  Dr finally ref'ed us to neurologist who confirmed Tourette's after patient history. Neuro switched meds again but new med which brings us to August and the school year starting soon.  During summer break, I spent my time learning what a 504 was which is how I learned about IEP's.  On the first day of school, I dropped off a formal eval. request & cc'ed everyone and their brother just to be safe (lol)!  Yesterday, we were scheduled to have an "Evaluation Planning Meeting" where we were to go over suspected disability and evaluations.  I was told it'd be less than 1 bell (roughly 45-60 min.).  I showed up with an advocate, a 3" binder FULL of work samples, progress reports, conference notes, formal written diagnosis from dr.'s, etc. to support my request.The first 45 min of the mtg. were spent listening to a room full of people tell me I was wrong, that I didn't want an IEP, that his needs would be met just fine. I held my ground.  Then the "team" switched tactics and asked what evaluations I even wanted (sarcastically) so I restated what was written in my letter.  The school psych said no because they didn't have the staff to do the ones I wanted.  I was told by the Tourette's Assoc. what to ask for btw.  They brow beat me a while longer before trying bribery... psych told me she already had the written prior notice partially filled out because she "thought she knew how this was going to go".  She said, "what is it that you even want?  Because I was ready, I mean, I have enough right here and now to start on his 504 soooo...?" Again, I held my ground.  Finally, she said, "I can see that you feel like you aren't being heard, and after you'd worked soo hard on your binder...." After I tamped down my anger, I said, "Again, I would like the evaluations done." I requested a few accommodations be started now while the eval's are being done.  That night, I got an email cc'ed to his teachers re: his eval's, stating he's on meds & for them to watch for any symptoms of meds such as: tics,...  We were very clear in that mtg & I even supplied a copy of the diagnosis from the neuro with my eval req. letter so I was pretty mad that she ignored that entire diagnosis when she informed his teachers!  Sooo, my question: do schools have to provide a comprehensive eval when a request is made or JUST the eval's specifically requested?  Pysch was only focusing on the ADD part of his diagnosis.  She argued that he's passed every grade and that his grades came up on meds so why am I even bothering? I said she was not factoring in the EFFORT it took ALL of us to get him through the year, EVERY year.  Another Q:  I am thinking he qualifies for the 2004 IDEA under the OHI classification for both ADD and Tourette's because it has caused him significant struggle in functioning as well as academically (though they can fight me on academically, either way he still qualifies because of functional development struggles) which is what the 2004 revision provided clarification on.  Also, the revisions that went into effect as of July 2005 state that school districts are no longer required to use the discrepancy formula for purposes in determining eligibility and are also required to address not only academic difficulty but also functional difficulty, which is undefined by law). Am I correct? And if so, what is my next step? Was the school pysch breaking any laws? How do I handle her now?
I'm sorry this is so long, none of it made sense if I didn't include background. I need to have this settled asap.  I've got another dr appt with my 12 yo to start his process for ADHD (combination type)!

[Sandman2]

   I am still not sure that you will get the IEP.   I don't understand your statement that, "I do not want the 504 because in this district, they are not written and parents are not involved.'   All of my resources indicate that a 504 does require a written plan ( how else would teachers know how to implement the plan?).
   Yes, the 504 does not require written notice.  It does not require consent, only notice.  But it does require a written plan that "describes what those accommodations and modifications will be."  The only thing that I am not sure of is how much weight is given to your recommendations for 504 accommodations.  However, given the fight that you are (so rightfully putting up), I think they would agree to anything you want.
    In short, don't be afraid of the 504 - its not a bad fall back policy.

[Angela111]

Thank you all for listening and the support you've given!  It's very kind of everyone to take time out of their day, not only to read my long-winded post but to reply as well :-)
I did post a reply but I'm assuming I did it wrong because I cannot find it now.  Quintessential newbie!  lol
The school psych. did state (rather sarcastically and snotty) while she was attempting to bribe me into letting go of the IEP idea, that she had more than enough to get started on a 504 Plan the day of the mtg. but she wasn't going to do the evaluations if I said yes.  My advocate and I both agreed that the eval.'s were needed to gauge the impact on his development.  I do not want the 504 because in this district, they are not written and parents are not involved.  Since they have told me so many half-truths and given me mis-information so many times, I do not trust them at all with the reigns of my son's plan. After the things that have gone on, I am firmly convinced that a federally binding contract is the wisest move for our protection.  
I did send a follow up letter via email in response to an email she sent to my son's teachers with incorrect information in it.  I attached a copy of the Intuniv medication fact sheet from the pharmacy to rebut her info, as well as a short Tourette's info guide for educators.  I also cc'ed all of his teachers and the IEP team.
In IDEA 2004, districts are no longer required to use the disparity formula to determine eligibility.  (That went into effect in June 2005.)  Districts are now required to base eligibility on the academic, behavioral and functional development of the child.  The law does not define functional.  So, schools cannot deny special education and/or related services based on passing grades, even if the child is consistently on Honor Roll and has never failed a grade. (This information was taken from Wrightslaw.)  
Our pediatrician has been strongly recommending (that's a nice way of saying he's nagging me!  lol) that my son would benefit from counseling since we refused anti-depressants for now.  It is one of the special education services that I'd put in his IEP, if I can get that far!  So that should work in our favor to establish need, right?  Actually, there are a couple of related services I think he could greatly benefit from (such as career planning, art/music therapy, language processing help, post-secondary planning, etc.) considering his age and looming graduation.  I don't know what will show up on an observation though, other than him being off task frequently and a high degree of distractability.  How on earth do you measure the EFFORT it takes someone to do something mentally?  How are we to know what it takes out of him, on a measurable scale, to even pass a grade?  Or how much of a toll trying so hard not to tic all day has on his development, let a lone taking away from paying attention to his lessons?  Especially if they are just visually observing a process taking place in his mind?  He's trying so hard right now, which is great and I'm proud of him for it, but will it hurt us in the end if all they're seeing is him "forming good habits"?  I know it's taking a lot out of him but I don't know how they could possibly measure that.  School's only been in session for 2 weeks and he is currently failing one class.  Granted, they only have 2 grades in that class but one was missing so it's a zero and the other was graded at 50%.  He is passing the others so far.
Did you ask for an Independent Evaluation or did you agree to the 504 for your son?  
What happens if the IEP team cannot reach a mutual decision, end up in due process and still can't agree on whether there is a need for services or not?  If I am an equal member of the team & my say is just as important... can I still be over-ruled and have the IEP & services denied my son if I do not agree to a 504? I've looked at countless resouces to try to find an answer to that and haven't been successful.
Thanks for the book recommendation.  I will look it up!
  

[Sandman2]

   What a shame you have had to deal with all those obstacles!
I agree with the above poster.  The 504 should be a no brainer.   You might want to buy  The ADD & ADHD Answer Book: Professional Answers to 275 of the Top Questions Parents Ask [Paperback] by susan ashley.   She has a full section on 504's with many suggested recomendations.
    The IEP could be Iffy due to the way ADD is looked at.  I am on vacation now and don,t have my resource material with me, but combining it with Touretts is definitely the best way to go.   Ashley's book also covers how to handle situations when you disagree with IEP's etc. if I remember correctly.
   Be home in a week and can do more research if you need it.  Best wishes!!!

[Sandman2]

    Excellent answer.  I think you covered all the major points.  Thankyou for your time and effort.

[TuesdayPatience]

Okay, first let me say that I feel your pain.  My 12 year old, 7th grade son has Dysnomia, ADHD (nos), and a reading disability (non-specified).  He had an IEP from 2nd grade through 5th grade because his reading was so far below grade level.  He, his teachers, my husband, and I all worked together to help him progress.  In 2nd grade he test in the 9th percentile for reading on his ITBS (standardized state testing).  By 5th grade he scored in the 60th percentile (high grade level)!

After our son was grade level in 5th grade, we began to see that there was something underlying that was still causing problems.  He went to the University of Iowa Children's Hospital Child Development Center for a thorough evaluation, diagnosis, and recommendations.  The doctor their wrote right on the recommendation letter that my son WAS to have a 504 Plan, that meds were up to my husband and I - NOT the school, as well as a listing of the accommodations he needed.

We just had our first 504 meeting for THIS school year (this is the 2nd year in middle school and his 3rd year with the 504).  As usual, there was that ONE teacher who had to just make me feel like an idiot and that I should just "be happy" that my son can PASS his classes alone, so why does he need modifications?  **RIPPING MY HAIR OUT!!**  Thankfully the rest of the teaching team was AMAZING - they had never heard of Dysnomia and wanted to do whatever they could to help my son (school had already been in session for a few days and they had already seen what a neat kid he is!).  Of course, no matter HOW they react, it is STATE LAW that they follow the 504, so their positive attitudes were just icing on the cake.

Like you, I go in with my info together and my main points plotted out.  This keeps ME in control of the meeting.  I have his old IEP and 504 info.  And I let them know that it is MY JOB to be MY SON'S VOICE - that they may be his teachers, but I am his ADVOCATE.  I accept NO EXCUSES for their failings (they did not have his 504 out for scheduling this year, so he was shuffled around three times before it was worked out...there is no excuse for that - I don't CARE how "busy" they were...HE is MY KID and I told them it WILL NOT happen next year or I WILL be going to the Board of Education).  

These are the accommodations they must make for my son (these are not in order as I am doing them from memory without the paper in front of me):
1) Preferential placement in co-taught classrooms (that usually means the class that has a special ed associate or co-teacher)
2) Use of his own notes on tests
3) Teachers must check that he has his homework written in his planner AND that he understands what it means - they must sign it after checking it
4) Parents are to be notified a week ahead a time for ANY tests if possible - and for ALL major tests
5) Tests are given outside the room with NO time constraint
6) Preferential seating in the room, away from any disruptive classmates or distractions - teachers are to use physical cues to help him focus (like a hand on his shoulder if he has his 1000 yard stare going on)
7) Parents are to be notified if his overall grade in any class falls below a "B"
8) Extra set of textbooks at home

I can't remember if there is anything else, but that about covers the major stuff.

My son has a "disparity disability" - meaning he may be "grade level" on his own (he would probably be able to pass every class...but it would be close in Literacy), but the tests done by the psychiatrist showed that his POTENTIAL is far ABOVE AVERAGE when accommodations are made for his Dysnomia.

SO - your son has a MEDICAL DIAGNOSIS (in my state, the ADHD ALONE is enough for a 504 Plan!).  His ADHD and Tourette's Syndrome qualify him for accommodations.  Since he is NOT below grade level, you may not be able to get an IEP - unless you can get it in with the Tourette's diagnosis as you stated above.  If you have an outside medical evaluation, that should be all you need to get the 504 or IEP written.  The evaluation done in the school is basically observation, the administration of some surveys to his teachers, and - possibly - an interview with your son.  They really don't do a ton of testing if you've already had it done outside.  The counselor at our elementary school was wonderful - she had great respect for the University of Iowa team and went with EVERYTHING they recommended.  For some reason, the AEA lady was there - she should NOT have been, as the 504 is through the schools, not through the special ed services.  She said she "didn't believe in Dysnomia" (yeah - like folks used to not believe in Asperger's Syndrome!).  I got so frustrated that I basically told her to stop talking (I didn't freak out, but I did ask where HER PhD was and that ended that!!!).

If the school will NOT take you seriously, GO TO THE SCHOOL BOARD or SUPERINTENDENT!  This is NOT something that you can wait out.  You have done your part - now you have to be that advocate that makes sure THEY do THEIR part!  

BTW - I saw that your son was included in the meeting last year.  I would just like to recommend that he NOT be included in any more of these meetings, at least until things are worked out.  I know my son already struggles with his self-esteem and that he gets stressed out when I am in my MOMMA BEAR mode.  Our boys don't need to hear any of this stuff :).

I don't think I hit all your questions or got all my points in, but I am exhausted lol!  I will check back here later - you can either reply here or send me a personal message.  More than anything, I want you to know you are not alone - that our kids are NOT their disabilities/disorders...they are OUR WONDERFUL CHILDREN first and foremost.  This is just one aspect of their lives RIGHT NOW - and, as their Mommas, we are able to shoulder this for them while they focus on just doing their best in school, making friends, and BEING KIDS :)!  You are definitely a wonderful mother - that is evident - just trust your instincts in this, no matter what those people who DON'T KNOW YOUR SON think/say.

~Blessings~