When You Can't Fix the Tics, Fix Yourself
In an effort to get people connected, you can now find posts from this site as well as other inspirational T.S. related stuff, on Facebook.
Follow me here! Feel free to write me, also, at HappilyTickedOff@Gmail.com
Talk at you soon – and can’t wait to connect.
Keeping this short as I’m at work. (Unless you’re my boss reading, in which case I am diligently coming up with 75 Examiner Headlines.)
How was your holiday season? How are the tics? How are you dealing with them?
One dear friend of mine from my private group keeps a Victory journal. It’s a faith-based writing memoir in which she shares her struggles and hopes for her son with God. By writing down verses and scriptures, she has an automatic go-to way to release some of her fears. I love that!
As for me, I am a pray-er and list maker. Here are my goals for dealing with Tourettes this year. Would love to hear yours.
Fantasy Goal
Not let tics bug me in the least!
Realistic Goal
Find the courage to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.
Vocal Tics Gone
Thanks to acupuncture, Stink’s vocal tics are gone. I mean GONE. Given how much crap he ate over Christmas, combined with video games and lack of sleep, I don’t believe this is just coincidence or part of the tic cycle. Acupuncture is the reason, so I’m grateful. (Stay tuned this week as I video tape the lovely Martina speaking on this subject!)
Still Shaky Shaky
Unfortunately, my son’s head shakes/nods are at an all time high. I mean, NON stop. (How they don’t bug him is amazing. I honestly get so drained being around it sometimes. I swear, it’s ME who needs some kind of hyno-therapy for this. Still, not depressed like I was years back. Just working on acceptance. There is hope!)
Martina thinks that the supplements will kick in after six weeks and to be patient until then. If the constant shakes don’t go away, it’s time to reconsider how much time he spends on the computer.
NOTE: I pray that he does find relief via the herbs she is prescribing, because he SOOOO loves his gaming. He is not playing all day. He plays weekends only. During vacation he plays 1 – 2 hours/day. This might seem like a lot, but as a kid, I watched TV 1 hour-2 hours/day. I also biked and ran and hung out with friends, just like Stink. We’ll have to see.
Realistic Plan for 2014 for Tic Treatment
* Gluten free unless a birthday party in which he gets pizza and cake. (Similar to me and wine. It’s all moderation.)
* Computers weekends only except 10 minutes/during week to feed some virtual plant in some game. (I know, it’s dumb)
* New sport introduced for daily exercise
* Dog for him to walk daily! (Stay tuned! He got a promise for a dog on New Year’s Day which was also his 11th birthday! Tics increase in the tween years, so I’m keeping this in mind.)
* Acupuncture 3 days/week + supplements
More Hardcore Plan if tics don’t decrease by Spring
* No 10 minute virtual plant feeding during week
* Going dairy free again
* Revisit the idea of Brain Balance now that I’m working and might be able to swing the 5K
* Consider some kind of Lens Treatment for tics
* Revisit an environmental doc to guide me on pros and cons of letting a kid be a kid (video games) and supplementing with good stuff I’m already doing
For Me
* Daily exercise
* No wine during the week
* Church on Sundays with family
* Bible Study daily (just ten minutes)
* Life Group (small groups of people thru church) to connect with once/week and remind me that my life is not based on tics but something so much greater than myself
I pray that 2014 brings you peace that transcends understanding. I pray that you (and I) remember that all kids have something. We can’t always fix the tics, but we can encourage the gifts our kids are born with. Personality trumps Tourette Syndrome. Love you all!
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.
I’m excited to bring you my very first post at my new website domain! Like my son’s favorite present from Santa, I hope my site can be a treasured gift to you so that you can find joy despite a diagnosis you may not be thrilled with. If there’s something you disagree with, let me know.
For those of you new to my blog, you can catch up on my TS journey at my old site here. But like Tourettes, despite good and bad days getting used to my new platform, this is my new home. Welcome!
For my first entry, I thought I’d cut and paste an entry I wrote in response to a friend of mine who was worried about her son’s new facial tics. She, like many new moms at the beginning, has moments of complete devastation. Sure, there are times when she feels like she’s okay with her son’s diagnosis (like the time when her son’s tics are the most minimal – shocking, I know.) But just when she feels like maybe she’s accepted his condition, a new twitch starts. With it comes fear, riding on a raging horse.
She wrote that she felt bad about, well, feeling bad! Like somehow she should be more accepting! Other moms in our group, it seems, are “over T.S.” and she isn’t.
For those of you who might feel like you are alone – that other folk can handle T.S. (or any disorder) and you’re in a fetal position in the corner drowning your sorrows with Two Buck Chuck from a sippy cup (hey, I resemble that remark!) rest assured – we all have our off days. Or weeks. Or months. Just hang in there – you will feel better in time.
Here’s my two cents on the subject. I edited my response a bit for the purposes of this blog.
I have been better lately for a variety of reasons.
1. Time: I have been down this road for FIVE years. I get the waxing and waning. I’ve done it all, from food and diet to supplements and possible medication options. I’ve done the holistic docs. I’m starting acupuncture. I have gotten to a point where I accept that Stink has TS and I”m doing my best. I don’t feel like ‘why can’t I fix it’ because I know I can’t 100%. But that leads me to #2.
2. A Plan.I have one. I’m going to do Brain Balance. I need to make some money to do that. This means selling some articles, teaching some online writing classes, Ebay, etc. Doing what I’m passionate about not only makes me joyful, but it has the added benefit of making me think less about the tics so I can actually change something I have control over: my attitude.
3. My Faith – Hope: Christianity has been a tremendous source of support for my up and down emotions.
* Note: Where I ramble like a Bible Thumper – Romans 8:28 says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” This passage is a source of great hope for me. It means that my “suffering” is not in vain.
That tics are just like a puzzle piece. For a while, like when Stink was first diagnosed, the puzzle pieces seemed jarring. It felt like they would never fit together. Slowly, with my plan, I got the border put together. That was my emotional balance.
Now I have some of the middle put together. I can see a beautiful picture despite some missing holes. With faith, the holes can be filled in with a picture I create. That picture is a life where Stink is happy, healthy, funny and over T.S.. And if he’s not over T.S., it’s not in vain, because his character, and mine, was shaped from it.
* More thumping: And a sidenote! I encourage all of you to find your own personal road to faith! Romans 5: 3-5 promises “And we rejoice in the HOPE of the glory of God. Not only so, but we also rejoice in our suffering, because we know that suffering produces perseverance: perseverance, character: and character, HOPE. And HOPE does not disappoint us.” (Hooray for hope! I love hope!)
4. Finding my Passion: My writing has been tremendously helpful to me. It’s my love. I can’t form sentences and write blog posts while, at the same time, obsessing about tics. It’s simply impossible. In writing this blog, I am serving others as well. I have bad days like we all do, but in lifting others up, I am selfishly lifting myself up also. The key for me in helping others was realizing that I can’t just serve when I’m feeling okay. God can use me when I’m feeling like a piece of spit out gum stuck to the sidewalk. Before long, I’m blowing good bubbles of encouragement. And I even forgive myself for stupid analogies like the one I just wrote.
* Last thing on serving others: This is not meant as some do-good Christian tip. I don’t care what your religion is or how you feel. Taking your eyes off yourself, and putting them on someone else, is the cure-all for anthing. Don’t believe me? Try it. You’ll get hooked.
5. Acceptance: I accept that some days I’m just down. I don’t like the verbal tics any more than you all do. I have moments where I can’t be in the same room with Stink. I need a break. I have to fight for my “me” time and my “down time” and work on my marriage to do this. It’s created a wedge between my husband and me, at times, as I’m no longer the “yes” person where he gets all the breaks after his hard day at work and I continue to slave. Yes, I have down time while the kids are at school, but I also do a hell of a lot of work while I’m at home alone. I know… I KNOW… I’m worth some relaxation. Rex is starting to understand that. It’s not been a fun road, but he’s getting there, and that is all I need. Love is not a feeling – it’s an action. It’s a verb.
To help with all five points above, I am not ashamed to say I take 75mg of Zoloft every day. It’s evened me out enough to take my head out of my ass and face life the way life is. I hope to not be on it forever, but if I need to take it, I will. My good friend, Chrissy, sent me a link that talks about depression better than I could.
In closing, please know I’m here for all of you. I hope you’ll consider making a plan for yourselves to then get a plan for your child. If it’s meds, go for it. If it’s back to work, go for it. If it’s exercise, go for it. But know this: if it weren’t TS, you’d face something else at some point in your life. Perhaps your mom would die, throwing you into a tailspin. Or a husband who cheats on you. Or your child could have some other illness or you could be diagnosed with something.
I truly truly believe, now, that TS is the invitation we all need to accept life on life’s terms and do the best we can. I pray that you all find peace and are not so hard on yourselves. I’ll take the same hope for me, too.
Until tomorrow, remember my motto: A kid who tics with confidence outweighs an insecure ass wipe any day of the week. (I should probably consider revising this tagline, but for now, the sentiment remains! Hug that ticker today!)
Happily Ticked Off 