Anyone Familiar with Tourettes and/or ADD and 504 Plans for School?

[decemberlov]

There is nothing really "simple" about this post but figured I'd ask for any advise or information from any of you here. I always seem to get some wonderful input from all of you, so here it goes.

My daughter was recently "diagnosed" with tourettes a few months ago. I say "diagnosed" because she really does not have an official diagnosis because we have not yet gone to a neurologist. Her pediatrician says he is positive but is not allowed to make that official diagnosis. I too know that this is the case. She's shown both motor & verbal tics since she was 3. She is now 10 and the tics have gotten much more prevalent, which they say is very common between the ages of puberty.

I have not gone to the neurologist for a few reasons: I will not put her on medicine, there is no true test for tourettes - only that you must have one vocal tic and one motor tic for over a year, and I don't want her to feel like there is something wrong with her. She does know and is very comfortable talking to me about it and asking questions. No one at home treats her any different or makes a big deal out of the tics - they're just a part of her, I'm afraid taking her an discussing this in great lengths and the Dr. asking her so many question may make her feel like something is really wrong.

The only reason I am considering taking her is that I do believe she may need accommodations in school if not now, maybe in the future. There is no way to know if the tourettes will get worse or better over time. Right now she has an understanding teacher and I have explained it to her so that I can avoid her getting in trouble for things she can not really control. (she has a tic where she will look over her left shoulder about every 5 seconds or so - not constantly all day but very, very often - I don't ant her getting yelled at because the teacher things she is trying to talk or cheat on a test or whatever).

I know there are a few teacher here and was wondering if anyone could give me any info about a 504 plan. Do you need a diagnosis from a Dr. on this. A pediatrician can diagnose add and would this be sufficient to get her a 504 plan?

Has anyone here ever been through a similar situation?

[creaker]

My son (autism) had IEP's and not a 504 plan, so it was a bit different. Generically, though, things like getting diagnoses, setting up meetings, implementing a plan all take time. It could take a long time. Which can be painful if you're doing it to deal with a current issue. Getting your ducks lined up is not a bad thing.

Trying to feel out how your district is about this kind of stuff is also helpful.

[decemberlov]

Thanks for your input Creaker. I feel we have been getting a better hold on school the past few weeks now that my daughter is aware of why she does what she does and also talking to the teacher. I could see that my little one was sad and scared not know why she was doing these things. I had no clue that we were dealing with tourettes until just a few months ago. The signs were all there from an early age I just associated them with "kid behaviors" that would eventually go away with maturity.

So...My main concern is teachers in the future that may not be as understanding or when things get more hectic with lots of different teachers in middle school - especially since the tics definitely do increase with anxiety.

I just want to cry when I think about all the hoops I have to jump through to get this done, it seems such a daunting task :(

[The Storyteller]

If she is diagnosed ADD, then she is eligible for an IEP. I don't know if Tourettes is a disability recognized through federal regulation as a qualifying disability, but ADD definitely is. You could approach it that rout and add modifications for her tourettes to the IEP, whether it is covered or not.

[decemberlov]

Thanks, I was thinking that the ADD diagnosis may be enough. I just hate the thought of all the money and time spent to see a Dr. that can not do a test but simply diagnose based on the info I provide.

[artist]

My son had a 504 plan. However, his pedi could not dx for ADD or anything else. Proper testing and evaluation along with an official dx made by either a by a neuro-psych or a pediatric psychiatrist was neccessary.