...on some days.

But I've come a long long way with a plan of action.

The problem with a plan for T.S. is it's kind of like having a plan for fighting a forest fire. You never know what direction the wind is going to blow. You don't know if you'll be dealing with a small flame, an explosion of fire that is easily contained, or something medium that burns 20 miles of nature over the course of a week.

That said, you have to have a flexible plan. You have to know that yes, you want the TICS TO END THIS MINUTE, but it might take a while, so commit to something for a month and try it. (Seriously, no cheating on the gluten at all. Be prepared for the kids to cry, scream and whine. Be prepared for your husband to think you are losing your marbles. Too bad! You have a plan! You are sticking to it.)

Give yourself the flexibility to say, "Hey, this isn't working, I will need to try something new." It's not a failure. It's life.

You will all be sooooooooo sick of me saying this, but the truth is this: You can't fix the tics sometimes, but you can fix an unrealistic expectation of your child's "perfect" life which includes any number of fantasies you might have in your brain. Mine included:

* All teachers will think he's smart and funny
* Everyone will want to be his friend
* He'll be charming but not obnoxious
* He will be artistic but organized

Those are just a few of the fantasies I had for Stink. Guess what? Those fantasies wouldn't be happening even if he didn't have T.S.. I don't love Tourettes., but I love love LOVE that I had the gift early on to wrestle, fight, scream and, reluctantly, embrace the idea that our kids are not ours to program like little Gap Models whose rooms look like the cover of Land of Nod. (Oh, why couldn't that last little wish come true for me? Oh, well. Tinkerbell must not have heard me that day at Disneyland. Damn that sparkly fake flying gnat!) 

I cannot take away Stink's horrible condition.

Oh, but guess what? Stink doesn't have a horrible condition! He's alive and well! That was just my early diagnosis fear talking! And also, even more astonishing, Stink doesn't think it's horrible either! Why? Because I decided pretty early on that even if I was dying inside, I wouldn't let him know. I'd focus on what he's amazing at, and then fight like hell to advocate for him at school and any place else needed.

Some of you have stronger cases of T.S. going on, so I'm not minimizing that, nor am I minimizing your fear. Nor do I think I was a perfect parent. I have backslided on many occasions. I WAS A BASKETCASE ALSO! But when I faltered, I got right back in the game. 

I have also learned, in the past five years, that worrying about what something could be doesn't change our kids' futures. What does set our kids up for success and self-reliance?

* Telling them we love them every day
* Working through any challenges they are facing (not ones that we think they might be facing... let them lead you!)
* Doing something that we, as strong women, love every day
* Getting our kids to engage in things they are great at
* Not letting them off the hook for wonky behavior because we feel sorry for them. A, there is nothing to feel sorry for. Tics happen. B, good folk in the world aren't put off by tics. Most don't even notice them. (It's true!) But good folk are put off by bad behavior.

This was supposed to be a post about T.S. and education in schools. But I'll save that for another day. After a few emails from some of you, I thought I'd take the time to address this!

Be strong, mamas. And when you're not, fake it. This might be the first time you ever were faced with something you couldn't completely control and that sucks. But guess what - we weren't really in control of everything before anyway. It was just dumb luck. Our tickers will have challenges, but they will also have the amazing gift of knowing that nothing is ideal in life. Nothing. It's a hard reality, but true.

I close with reminding you that during this season of Thankfulness there is so much to be grateful for. I encourage you to mourn and grieve, but I then encourage you to find something, anything, that you can be hopeful for. Because believe me, there's a lot there.

Thinking of you all.

Andrea

* photo of Stink at Disneyland around the time of his diagnosis. He was 4 and I distinctly remember obsessing over, "Oh, no, will the excitement make him eye roll more? We can't do the corndogs because of the nitrates! We are at the Happiest Place on Earth and I'm freaking the f out!" And then, on a few occasions, I had so much fun I forgot to worry. And then it came back. Wash, rinse, repeat for the next 5 years. It's draining. I got stronger. And you will, too. And hopefully, it won't take 5 years! I'm writing the blog no one wrote for me. I hope it's helping? Call me your tic whisperer.
 


Comments

JB
11/17/2011 06:09

I stumbled onto this website by accident as I was searching for info on natural remedies for tics.

Andrea, I love your positive attitude. I was so stressed when we first figured out that my son had the tics (6 months ago), kept thinking if he didn't have this everything would be perfect! Instead I am realizing that no one has a perfect life. I have to say, after the initial shock wore off it hasn't been too bad. We haven't come out and told many people, but they notice... and then move on. And if they can't move on, must be their own tic!

We will support my son, and at the same time teach him to be proud of who he is, a smart, funny, talented kid who is learning at an earlier age than most how to deal with life's inevitable adversity - with a mix of faith and humor.

Thanks for your posts, keep up the great work! BTW, your son is lucky to have such a great Mom!

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andrea frazer link
11/17/2011 11:26

@JB - Thanks for stopping by.More posts to come! And,honestly, I wasn't always positive. LIke most things in life, it's a choice. I can't change tics, but I can change my attitude about them even if I am faking it. It has made all the difference for my family.

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Erin
12/08/2011 12:45

Thanks for the great blog. I found it a year ago when my son started ticcing and check back in each time I go into panic mode (new tic, different tic, etc). This post really helped...and I totally related because we were on vacation in Hawaii (first family trip ever) when his tics first hit hard and I remember thinking "We're in f-ing Hawaii and all I want to do is stay in the hotel and read about TS, what's wrong with me?!" I hope I can be as positive as you, as strong for my son, and keep the worry and fear to a minimum.

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Alyssa
03/23/2012 10:12

Howdy, Girlfriend. I knew I could count on you for a pick-me-up! I miss you, so I went seeking out your blogs last night and have been reading a bunch! You are so gifted, my friend. I am so happy for you. I can really relate about the not-being-in-control thing. I had to learn to accept that too, and once I did, there was a calmness that settled in and I am more able to be present for the day at hand. Keep being strong... and consider visiting your long lost friend, tics and all! :) Hugs

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