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I Spy New Science on Tic Relief (And, Um, Tics are UPPPPPP)

spies

Everyone in my Twitch and Bitch group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 – the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it – the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the T.S. scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neuro-typical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids. The best thing I’ve discovered is to not freak out about any “issues” being T.S. related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t give Tourettes a free “Get out of Jail card” for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that – let’s get real – are not really flaws. It’s his body. Just as someone of a kid in a wheel chair likely feels pangs of sadness each Christmas when the child’s friends go ice-skating and Mama must find alternative sources of entertainment, I mostly embrace the truth that Stink is not someone else. He is Stink.

The mom of the wheelchair girl is not going to scream at her “Why can’t you walk?” any more than I’m allowed to scream “Why can’t you STOP rolling your eyes back and forth?” (Oh, man, the eye rolls this week – OUT OF CONTROL.)

That said, and here’s the real rub… there’s a difference between a mom accepting that her child has certain disabilities and special needs (Ugggg… the words “special needs” also drives me crazy as don’t we all have special needs?) and allowing the kid to falter due to poor choices that both the parent, and the child, make.

Example re: the wheelchair kid: So they can’t go ice-skating, but it doesn’t mean they get to sit all day long in front of a computer, gain twenty pounds, and not do physical therapy for upper body strength. It doesn’t mean Mom might not keep an ear out for alternative ways to get that kid walking if the “cure” is being developed.

Example for my kid: Accepting mild tics as the norm for this condition is different from accepting mid to high-range tics based on poor choices that include:

* Loads of extra gluten because there’s always a holiday party, a birthday party, a play date where “everyone else gets to eat pizza and cupcakes it’s sooooo not fair”

* A school event where someone brings in corn bread and Kool Aid as if to intentionally make get my kid to leg kick like a Rockette just to really. pxxsss. me. off. (Do putting “xx’s” in a bad word make me classy or perhaps even more redneck crude because I am covering up my poor language with stupid letters? But I digress…)

* Extra computer time where he sits in front of a fast-moving screen and overloads his frontal lobes with Dopamine, causing a huge spike in vocals and head nods.

* Not enough exercise and sleep.

* Not enough veggies.

* Not enough good supplements or acupuncture or maybe, yes, maybe trying something else that can calm down these movements and high energy. I’m open!

One of my Twitch and Bitch members posted this encouraging article about break through technology in treating tics and Tourettes.

I of course got excited when I read of a possible break through treatment because, I have to be honest, my kid’s energy and tics this December have hit new highs.

After a good six months of being on the same page with my husband on everything (he’s really been AMAZING since I’ve been back at work) we skipped church today. Instead of worshipping together and enjoying our family at the park afterwards where we laughed and ran and counted our blessings, we hung out in the bathroom for fifteen minutes counting the tics. It was a lovely photo opp: Him sitting on the counter, me on the tub which, oh my, needs to be scrubbed in the worst way.

We went round and round… and round and round… about my worries about Stink’s tics and computer addiction love and my husband’s complete out of touch with my son’s real needs confidence that Stink will be fine despite some movements and sounds he can’t control.

On one hand, I’m thrilled someone is not as obsessed and vulnerable about T.S. in my home. I am extremely lucky that I get a break from all my obessions over tics domestic responsibility while my handsome hubby handles it like a pro – calm, relaxed and with an amazing attitude. My mate has impressively taken over all drop-off and pick up, play date coordination, food shopping, laundry and teacher meetings so all I need to do is go to work and write. It’s brilliant.

But this morning, after the kids lost their computer privileges for arguing and me, at my limits with one too many discussions revolving video games, I’d had it. Rex and I had a very heated discussion which ended with us deciding to drop the issue for the time being.

So we did.

But it didn’t keep me from dropping him the email below. Because, well, I just care. Too much. I care about my son to the point where I won’t stop fighting for some relief until I have no fight left. And yes, while tics and lack of focus bug me a hell of  lot more than they bug Stink, as a mama, I just know when something isn’t right. And we have to do something to calm things down so my kid’s brain can be more balanced. I just know we do.

Hi babe -

While I hate to argue about old stuff, I’m at least glad we talked and left our discussion with a plan. It’s more than we have had in the past. 

 That said, I just want you to understand that I’d be lying if I said I could ever just be “okay” with T..S. I  will NEVER get over fighting to calm down this beast. I’m sorry – I know it’s me who can be a beast to live with, but I’m just not done looking for relief – for him and, sadly, for me. I wish that weren’t the case, but it’s true.
 
I can accept what I can’t change, but as long as there is something out there that might change this, I have to keep looking and trying. 
 
I will work on not letting it consume me – perhaps a prescription for doobage? kidding… kind of… but this can only happen if you are part of listening to what I think may or may not work.
I get that you don’t want to go broke going after pie-in-the-sky alternatives – which makes sense since our income just dropped by 75% – but I also need to know that you are open to treatment if something if seems reasonable.
Unlike before – with Stink’s tics on the rise and all the pressures of middle school looming – I can’t… I won’t… carry the burden alone. To you, it’s not a burden. I am in shock and awe over that, not to mention gratitude. But to me, it’s like carrying an elephant on my back. I’m not up for it. 
 
Sure, I can put the elephant down, but then what? I can’t just let that elephant run wild. It must be led and tamed and be made useful.
The good news about my pit bill approach to our family? I will always fight for health, like I did for you and your job. I am not getting up at 5am to commute an hour for work for no reason. I believe YOU can be healthy and happier at home starting your own biz. 
 
I will take Pip on a walk today and spend time with her as she had kind of a rough weekend. I’d rather, honestly, be meeting Chrissy for coffee and chatting about Christmas plans.
 
And, leading me back to this email,  I  will never stop trying to find balance for Stink’s brain so he can be the best he can be.
 
For now, today, I’m letting go. I am going to walk and pray and give as much as I can to the Lord because, tics or not, He has an answer for me and will make something out of this struggle. Just look what He did for us? I’m closer to you – I love you – more than I have ever loved you in my life. That is God – that is transformation at work.
 
THANK YOU  for taking over the video game and homework stuff and being such a strong presence in this family. I trust you, even if I want to fight you tooth and nail sometimes. That whole ‘take over, babe, as long as I’m completely in control?” That’s part of my charm! Lucky you!

I do love you.
Andrea
For those of you out there in similar boat to me, let’s continue to accept the tics we cannot change, change the tics we can, and have the wisdom to know the difference. Let’s love on our kids and our spouses when we can. And let’s support each other. Love trumps tics every. single. time.
Love, Andrea
* Photo of my kids performing in their espionage themed church musical, “We Three Spies.” They were amazing! Pip sang a small solo and Stink hammed it up like a pro. I know, it’s a shock my boy is an extrovert. :)
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.
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About Andrea Frazer

I'm a produced television, magazine, newspaper and national blog writer. My current project involves a book about my journey raising a son with Tourette Syndrome. In dealing with twitches and tics, I've gone from despair to acceptance to hope. Now, like the title of my book, I am Happily Ticked Off. My goal for other stressed out parents is for them to arrive in the same place with tips, tools, suport, diet tricks, supplements and more that I'll provide at my site here. Welcome to Happily Ticked Off!

2 responses »

  1. I love reading your stuff Andrea! This was a treat.

    Reply

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