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Tourettes, UCLA Surveys, and the Craziest ?s Stink Has Ever Heard Of 10/27/2011
6 Comments
 
It's been a crazy week for me, hence the lack of posts. I hope all of you are having a great week with your little tickers and doing nice things for yourselves.

In between a few hours of writing and hanging out Thursdays with Topanga T, I've been knee deep in UCLA paperwork for our big tic appointment Nov. 1.

For the praying type, I'd love to ask for your coverage on that appointment. I'm looking specifically for:

* Wisdom to ask the right questions about Stink's focus issues
* Wisdom to ask the right questions about medication vs. sticking with the natural protocol we are on now
* Patience with my husband who is not one to accompany me on big trips like this
        ....and not to forget....
* Good traffic! L.A. has some crazy freeway upgrades going on. A half hour drive can turn into a two hour drive quick.

For the appointment, I had to fill out over 50 pages of surveys regarding Stink's tics and emotional state. I also had to wrangle paperwork from the school. (This does not include additional paperwork I'm dealing with to get him evaluated for an I.E.P.)
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Call it God's grace, call it a sudden flash of "I'm over it" but I've felt peace. Rex has really stepped up to the plate in supporting me, also. That's a whole other post. Let's just say that there's a balance between accepting who our spouses are and being sure we ask for what we need. I think I'm reaching that wonderful middle ground. It feels good.

What feels even better is that, in addition to the above paperwork, Stink's personal answers to his own 3 page document on tics and emotional level were right on par with what I'd filled out for him on the parent survey.

He made me laugh so hard at a few of his answers that I simply had to share them with you. (You'll see, too, why he sometimes gets busted in class for being a bit toooooo comfortable with himself.)
 
Like marriage, raising confident kids is a challenge. I want them to be kind to others, love God, and show respect, but I also what them to not take things so seriously. But why make me go on and on? Let 8 year old Stink speak to this topic - in particular, the idea of people making fun of him or riding alone in cars (Clearly the survey was testing his anxiety level. His NON-EXISTENT anxiety.) 

The first question is a bit mumbled. He has to answer yes or no to "I'm afraid other people will think I'm stupid." (Some of you T.S. mamas have this very fear. I did, too, a while back. I don't anymore, though.)

 
Thanks for checking in and supporting our journey. Right back at ya, mamas.
 


Comments

Joy
10/28/2011 04:54

Great video, Andrea--- he reminds me so much of MY son- smart, funny and handsome! I guess if ya gotta win SOME part of the genetic lottery, you could do worse than smart, funny and handsome.

p.s. I say a little prayer every day on my morning drive to work for all of us. I'll add the one for no traffic jam.

Reply
andrea paventi link
10/28/2011 07:02

@Joy - I appreciate the prayers. Saying them for you, also. Write me off line if you ever need a boost! LifeHappins@Gmail.com. I know a few praying mamas who could definitely bolster you from the spiritual end. xoxoxo

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Janice link
10/28/2011 09:17

My son has Aspergers with Tourettes but they never added that to his diagnoses because it was minor...Minor? Doctors really make me wonder...I remember all that paper work...we also went through almost 2 years of testing to get there...so I'll be thinking about you...it can be a hard road but the trips worth it :D

Reply
andrea frazer link
10/28/2011 12:57

@Janice - Thanks for the feedback. Re: your son's aspergers, if you don't mind me asking, how do you know he has it if he wasn't diagnosed officially? Is it just that he has enough traits that fit the diagnosis that you know that's what it is? And is he high functioning enough that perhaps (combined with intelligence... just guessing here) that the "label" slips under the radar? Finally, assuming it is indeed aspergers as you say - and your his mom so you know - what does this mean for him in terms of behavior therapy or what not? Has it been an issue? Thanks for answering the questions. I'm really curious.

Reply
Claudia
10/31/2011 21:12

Good luck tomorrow! Will be thinking of you and hoping for the best. Keep us posted!

Reply
Irishmama7
11/01/2011 19:20

Prayers heading your way for your big appointment and results. Also you and your son are so absolutely adorable! I miss your wit, writing, laugh (at least what I think of) and you sharing of your family. I am going to try to check in more often because you truly have a gift to touch and inspire others. Please know you are loved and that God has used(and is still) you in more ways than you know.

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    TICKED OFF: TOURETTES TALK

    "When You Can't Fix the Tics, Fix Yourself"

    Consider this is your 12-Step Tourettes Support Group where we will encourage each other to:

    1. Accept the tics we cannot change

    2. Change the tics we can

    3. And have the wisdom to know the difference.

    ABOUT ME
    My son, Stink, was diagnosed with mild Tourettes when he was 4. I was terrifed he would curse, shriek, scream and hump busses.

    Quite the opposite, he is highly creative, social and thriving.

    I keep his tics at a minimum through a gluten free/caesin free diet.

    While I haven't eliminated his tics altogether, I'm eliminating fear through a good dose of humor and acceptance.

    I hope you'll join me so we can support each other on this crazy journey. Welcome to Ticked Off.

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    I write weekly for the New Jersey Center for Tourette Syndrome blog. Come visit me, and other awesome parents, for some daily support!

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