We have yet another meeting tomorrow with Ilijana's principal, teachers, and the school psychologist as well as guidance. We already had this meeting to set up a 504 plan for her but they apparently did nothing and we need to have this meeting yet again.

With Ilijana's Tourette's, we asked that she be allowed to leave the room if her tics ever got so bad. We also asked that she not be made to watch movies/videos as they make her tics worse for some reason.

We were assured that this was not a big deal and that we didn't need an official plan in writing. They would specifically talk to the music teacher as he is out of class a lot and his substitutes show a lot of movies. We spoke directly with Ili's teacher and she made Ili feel very comfortable and they set up a plan on how to secretly communicate with each other if she needs a break, etc... We were really pleased with that.

However nobody ever communicated anything to the music teacher. They had yet another substitute last week, and it was a sub Ilijana didn't know at all. Of course they watched movies the entire time and she had a lot of trouble holding her tics in by the time they watched the second video. She also did not feel comfortable telling the sub in front of her entire class why she needed to leave. I felt so badly for her.

Her tics have been increasing lately and that is stressful enough. It isn't affecting her grades severely, but she usually gets 100% on spelling tests and all her work, and she's missing 1-2 each paper/test and really easy, and obvious ones. To me that shows that she is just losing focus as she is spending so much energy controlling her tics.

Anyway, long story short we have to meet with them again tomorrow. I'm getting really tired of this run around. We have contacted an attorney as it shouldn't be this much of a struggle to get kids who are good and cause no problems, the minimal accommodations that they need to be their best!

DH is taking off as I am not getting anywhere with this on my own. It is a sad thing, but you have to have a male figure present to get anything done it seems. We were warned about that, but it still seems insane to me. Apparently Mom's are perceived as "irrational" and "overprotective" but if a Dad says the kids need this or that, it gets more credence. Insane!!

Then we have Milo's IEP meetings starting in the next few months. I'm going to need a serious vacation after this school year! LOL!

I hope you get a resolution for this madness with the school. I'm sorry to hear that the llijana is having such a hard time with the tics. What sort of tics is she having these days and how in the world does she manage to control them I thought it was impossible to control something of that nature.

Best of luck!

Thanks so much!

Susan, right now she has a squeaking tic where she lets out this high pitched squeak. The other one that has been really bad is a yawning tic. She starts yawning (or what she thinks is yawning) and can't stop it.

With Tourette's, there aren't many medications that work really well. The only thing that has a proven record is habit reversal therapy (which is what she sees her therapist for each week) where you work on strategies to stop the tics for as long as you can and hopefully when you want to stop them.

It isn't usually affective for kids this young, but she really is using the techniques for the movement tics. The vocal ones, all they can offer is deep breathing instead of expressing the tic. She just can't do it for very long. She is working so hard and only able to stop it for about 10 seconds right now.

Tics aren't voluntary, but people can suppress them (much like how we can stifle a sneeze but usually we eventually have to sneeze) if that makes sense. The more the kids suppress the worse it is when they do feel relaxed and can "let them out". So she works all day keeping as many of her tics "in" as she can and then when she gets home she is a moving mess of noise for a good hour until she "gets them all out" and then it sort of goes back to normal and she just makes a noise here or there.

What is crazy is that Tourette's is pretty rare (as was autism back in the day) and there is another girl in her class who has all kinds of facial tics and noises and Ilijana's best friend from preschool (we just saw her for her birthday party last weekend) had so many tics like nose wrinkling, eye blinking, etc...as did her younger brother that it breaks my heart.

I really do feel like our polluted environment and all the chemicals and additives in foods that our kids are exposed to and all that we are exposed to that affects our genes really is causing so many more kids to have these rare neurological disorders.

I never met anyone who had Tourette's and only knew one kid with autism my entire growing up. Now you see every other kid with some issue and it just breaks my heart. Same thing with the asthma rates and the life threatening allergies so many kids have now.

Our area in Western PA had so many years of pollution from all the steel mills and we still have really poor air quality overall. We also have sky rocketing cases of developmental disorders and even clusters in areas. Just like some of the cancer clusters they found in the 80's (and still find).

I'm not a tree hugger by any stretch, but our bodies weren't meant to eat chemicals in every meal or breath in crap.

Sorry to rant but it just has been on my mind ever since we saw DD's best friend this past weekend. Nobody in her family has tics, and to see her and her brother with such severe issues (when we just saw them this summer and nothing was going on then) just makes me really wonder what is going on.

For the movement/motor tics the strategy is to do the opposite movement. An example is Ilijana has a "flapping arms" tic where she literally flaps her arms up and down like a bird, especially when she is excited. She either sits on her hands during school, or sort of hugs herself (like she is chilled) to prevent her body from flapping. It supposedly gives her tic an outlet but in an opposite and possibly less noticeable movement.

If she wants to open her mouth wide ( a typical tic) she is taught to push her lips closed or to smile instead of the open O movement.

It is really tough and she'll have to learn to figure out which opposite movement feels the best and helps her suppress the easiest as she gets older.

Therapists don't usually start this therapy until kids are about 10 as younger kids don't have the same level of awareness or control that older kids do. So with Ilijana only being 8 we see some success but often she doesn't even realize she's doing a tic until someone else points it out, and at that point it is too late.