I spy new science on tic relief

Everyone in my 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 TS 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 neurotypical 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 TS-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 spend give Tourettes a free pass 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.

Example for the kid in the wheel chair — 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 with the HUGE increase in tics — accepting mild tics is different from accepting mid to high range tics based on poor choices:

• Loads of extra gluten because there’s always a holiday party, a birthday party
• A school event where someone brings in corn bread and Kool-Aid as if to intentionally make my kid do leg kicks and head jerks
• Extra computer time where he sits in front of a fast-moving screen and overloads his frontal lobes with extra 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 group members posted this encouraging article about break through technology in treating tics and Tourettes. I, of course, got excited because, I have to be honest, my kid’s energy and tics this month 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, we hung out in the bathroom for 15 minutes, him sitting on the counter, me on the tub. We went round and round… and round and round… about my worries about Stink’s tics and computer love and my husband’s complete confidence that Stink will be fine.

On one hand, I’m thrilled someone is not as obsessed and vulnerable about TS in my home. Rex has singlehandedly 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 having 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 I might have dropped him the e-mail 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 “OK” with TS I  will NEVER get over fighting to calm down this beast of TS. I’m sorry – 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, 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, but I also need to know that you are open to 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. 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 e-mail,  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.

And I 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.