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Twitch & Bitch - My Personal Support Group 03/25/2009
5 Comments
 

I'm part of a private Google Group I created called Twitch & Bitch. Unlike a public forum, it's a place for us TS moms to vent, complain, cry and also brag like heck about our kids where it's only for our eyes.

As much as I know that my public blog here has helped quite a deal of you (thank you for writing and letting me know) it's also crucial to have support without fear of random eyes or unsupportive critics giving a cruel statement when that's not what we need during crisis.

I'm writing about Twitch and Bitch for two reasons.

1. If you are interested in being part of a support group, please email me. When I get at least 5 members I will hook all of you up so you can have the same kind of support I've gotten from the 12 mamas in my group.

2. I want to share an excerpt from a member, Lyn, with her permission. This is one example how in sharing her story about a brother with TS (her son also has it - a mild case) I was able to gain new insight into TS.

It validated a truth I already know in my heart: That my son is not his TS. It's ME with insecurites from my past. My vanity. My worries about "what will this look like to someone else?" when it really is all about "Who do I look like to someone else?"

Lame. LAME.  

I'm so much less of a people pleaser than I used to be. It's not about others. It's about my family first. And I couldn't ask for a better son. I thank God every day for the TS - for opening me up to being a real person, not some phony ass who can't stand up for herself, be who she needs to be for the ones who really matter, and live with true intention. (I'm a work in progress of course.)

So, here's the letter from Lyn.

It is so important that people become aware of TS.  I feel all of a sudden there's a lot more info on it here in Australia... with 60 mins and their stories, the house makeover, and during that show they played a couple of those adds with the
little boy in it.  The add was good because it showed and explained
that he has very minor tics, compared with what is usually seen.

Is it any wonder that people are so scared of a diagnosis?  All they
really see is the worst cases.  It's the same with a cancer diagnosis,
people assume they're going to die, and that's not the case at all.
As I've said before, my brother probably had moderate TS... but I
wonder if it would've been that bad if he'd been treated better.  My
Dad was a creep to him, treated him like a pig, an outcast.  He held a
secret thing too that he wasn't really his child.  My brother wishes
it was true.  Sad.  My Mum was the total opposite.  She adored him and
accepted him totally, as everyone else did.  Honestly, I can't
remember it being a huge issue.


Dad use to call it his "rot".  I'll NEVER forget the day when I was
sitting beside my brother on the lounge {I would've been 5 yrs old and
he was 13}, he was ticcing away and I was staring at him.  He said {in
a tone brothers use with their pesty little sisters} "What are you
looking at?"   My  innocent response {which I later choked on} was
"I'm watching you do your rot".  Well, the look of total hurt on his
face is something I'll always remember.  I wasn't being mean, because
to me it wasn't a silly thing he was doing, and I assumed it was
called "rot".  


But, that was the turning point for me.  At that time I
realised , hey, this isn't funny and he has a problem.  After that I
never purposely stared at him anymore, but nor did I avoid looking at
him.  I just treated him like anyone else.  We still had a our fights,
and I guess I annoyed the hell out of him, esp when his mates came
over... lol, I always wanted to be around him.
There are far worse things than TS, and I'm so happy I have this
brother.

That letter broke my heart. I will NEVER do that to my child. And I know that you won't either, or you would not be here.






 

 


Comments

M&JsMama
06/03/2009 09:58

Thank you for posting this blog - I stumbled upon the babycenter thread as well.

My daughter Maya was diagnosed 2 years agao - since then she has developed way to control the tics - she told us last night if she's constantly moving she can get rid of her "shivers'.

She recently joined a chorus and loves to sing - I've noticed a HUGE reduction in her tics. Does anyone have any info on music and tic reduction?

Also, what about a link to OCD? And being a GATE kid?

Thank you!!

Reply
andrea frazer link
06/05/2009 21:33

HI M&J -

I don't know if music is a reducer per say, but any kind of relaxtion seems to work.

AFter a 3 month hiatus many of Stink's old favorites came back this week. A lot of it had to do wtih overstimulation, not enough sleep, crappy eating.

I'll post about it soon.

Meanwhile, welcome aboard! I need to post more. I will get to it and I'm also wishing you so much luck!

Andrea

Reply
wendy hanek
08/13/2009 11:18

Hello. I am interested in joining a tourette's support e-mail group. Please set me up in one, because I really need to talk to people with a similar situation. My son was diagnosed last year at 7 years old. Thanks, Wendy

Reply
tracy
11/12/2009 11:52

Please email me about joining your group. My son Jake was diagnosed with Tics from getting the regular flu shot, and then getting the swine flu shot. I will go into detail later, I have not seen anything posted since August of this year though.

Hope to hear from you,

Tracy

Reply
mj
01/22/2010 12:02

We don't have a diagnosis but a whole load of tics and me going out of my mind with worry...an appointment to see the consultant paediatrician in a couple of weeks but a history of epilepsy and chronic asthma...I'm so upset and worried and she senses it making it all the worse.....

Reply



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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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