I received one of several similar letters this month from a mom asking me how I explained tics to my son. She also asked if it's really true that my son is not bugged by his tics. After all, most websites/literature points to how frustrating they can be.
I can honestly say that my son could care less. Granted, his tics are on the mild side. But even so, this seems to surprise a lot of people. They want to know why he lets them roll off his shoulder shrugging back.
Here's my answer for that.
My son isn't bugged by his tics at all. I told him about his TS when he was about 4.
On another my note, my daughter is ticking now also. Minor, but there. She just turned six, and all summer she was sniffing. Now she's doing pretty consistent throat clears and loud sighs. Manageable for sure. Might be transitory tics, but if it walks like duck and talks like one it is one most likely!
My husband and I are fine with it. We're just over the drama of the first few post-diagnosis years. Stink paved the way and Pip could care less, so we're going to stay chipper for her sake also.
I believe our attitude answers your second question about the tics and why neither child is bugged by them. We told them that this is just how they are made. 'You are sooo smart and your brains move sooo fast you have no choice but to release all that energy in a tic!'
I told them if people ever and ask them questions, or give them odd stares, it's only because these people wish that they, too, were as brilliant as they are.
I quickly reminded them not to brag about their extra smart gifts. The tics speak for themselves. If someone asks, they only have to say, 'Oh, that's my tic!' I added, 'We don't want to make the other kids feel bad by not being as special as you are.'
Our upbeat, no-nonsense, take the world by the horn attitude set the tone. By 9 or 10 years of age, Stink and Pip will likely know that Santa is not real, the tooth fairy is a sham, and I created the biggest fib about tics in the history of time. But by then, their brain waves will be wired toward loving themselves. They might have moments of despair, but the true nature of them will have already been formed."
Perhaps the main reason my children don't care about a few tics is that they are too busy taking photos of their stinky socks...
Reading books, making potato clocks and photographing chickens...
And let's not forget their award winning shot of Mama's butt crack cleaning out her storage bench. (Talk about National Geo-graphic!)
It has now been scientically proven that:
1. Potato juice can, indeed, power up a small clock face
2. It is impossible to tic while coughing up a lung from laughter.
Readers, I'd love your input. I am obviously just one mom of a TS child. You might have a different approach, or choose not to tell your child at all about their Tourettes. Me? I talk about everything with my kids - and giggle. What else can ya do? Your kid is going to tic whether you enjoy life or cry about it. So, my suggestion... have a good pity party for a few minutes, then find something funny to do. It's a good way to be!
Suggestions? Input? (Other than to wear a belt if my kids have a camera in their hands?)
If any of you happened to miss Discovery Health’s new documentary “Tourettes Uncovered” last week, it’s airing again September 24 - this Friday at 3Pm. Full disclosure
I was asked to review this by Discovery Health well over two weeks ago. I was not paid.
Should you watch it?
Yes - If you're interested in watching 3 very extreme cases (1 minor one) and want to learn more about how violent tics can affect a child medically and emotionally.
No - If you're new to this often confusing disorder. It will just upset you unnecessarily. While some children will experience violent tics and problems related to TS (and my heart goes out to those families) many will not. My son (and perhaps your child) will have tics that fly quite a bit under the radar. And when they do show up (hey, Stink has his days of obvious throat clearing and eye rolls) they are manageable.
Detailed review: I watched the show from start to finish. From the moment the creepy mystery music started playing, I cried my eyes out. I was a blubbering mess for three days afterwards. (Think PTTD - Post Traumatic Tic Disorder. Brought me right back to the original diagnosis four years ago. What would happen to Stink? Would he be bullied? What would his life be like? Why were all these crazy websites telling me about anti-social symptoms, behavior problems and isolation due to TS?)This series, while an excellent, informative and interesting documentary, highlited mostly extreme cases. Yes, kids suffer from insanely violent tics like uncontrollable running, hopping, shouting obscenities and bed tics that make them jerk and twitch so strongly it takes hours to go to sleep at night.Yes, many kids fall into debilitating depressions from being teased, humiliated and being just plain tired from the ravaging effects of uncontrollable shakes, punches and body tremors. I am so grateful that Discovery Health advocated for these children. They showed some excellent footage of a child talking about bullying. The show effectively educated about medical and psychiatric treatment. It ended on a note of hope for each case depicted.But I want to remind all of you moms and dads out there – especially those of you living in that fearful place of an initial diagnosis – that there are many many MANY more kids who have mild Tourettes like my son, and very likely yours. (Even kids with extreme TS often find it goes into remission as they enter their adult years.)A label of TS does not mean our children are going to be ostracized or have to undergo deep brain stimulation (like one boy in the program) to keep them from shaking so badly they need a wheel chair to function in school. (Though deep brain stimulation? A totally great option if needed. It worked wonders for this amazing boy! Hooray!)A label of TS does not mean our kids will only be seen as weird or strange. (Well, my son is strange, but not because of his TS. How odd is my boy? Let me count the ways...)My biggest fear for new parents watching this show is that they will turn off their tvs and run shrieking into the hills (or their garage... or their barn... or wherever the heck they live) “Oh my God, my baby is going to be taunted and made fun of and have to undergo brain surgery and when he's a bratty teen I won't know if he's telling me to 'Fuck myself' or its just the TS!” If you’re a new parent of a child with TS – one who was perhaps like me and FREAKING out over what it all means – do yourself a favor and find something that makes you laugh.
Tics are not the end of the world. They are not a destination. They are blip on the amazing journey of childhood you will still have with your child – minor blinks, jerks and vocals aside.For a quick preview of the show, you can watch here and decide for yourself.
And remember: A confident child who tics is preferable to a "perfect" child who is falling apart on the inside. Go hug that ticker of yours today!
At least once a week I receive an email. More often than not it's from some fretting mother with a newly diagnosed son or daughter. I have made it a point to answer each and every one of them. If I have misplaced yours in my important myriad of tasks from cooking gluten free pasta to negotiating an argument over whether Elmo could, or could not, kick Dora's ginorous oversized noggin, I apologize.
Meanwhile, I thought I'd cut and paste a response I wrote to a letter I received today. It answers many of the same questions a lot of you have brought up.
As usual, I have no major answers. But I have started laughing. And that's always helpful. I hope you do, too.
Hi back -
I hope you are having a great 3 day weekend. We are back from a short excursion to our little cabin in the woods. I know that we're brats in this economy to own a little getaway, but we're not big spenders, so we put our savings into something that hopefully will give us some memories and some rental income. It's in Big Bear and sweet - very retro Berenstain Bears kind of place. (We're talking deer wallpaper and a poor little deer head on the wall named "Ralphie" who gets decorated for each major holiday. Don't hate me if you're Vegan.)
I am totally with you on the waxing and waning of the tics. It's easy to accept things when there is a waning period. But even with that, like today's day of more tics, I am still in a better place by sheer willpower. I can't change it. I am done knocking my head against a wall over and over (hey, can that be a tic?) and worrying if the pancakes and syrup plus the dust in the cabin brought the head bob back. If it did, it will also minimize soon. The whole bucket theory.
To answer your diet question, I haven't 100% backed off. I still go gluten free when I can. He doesn't like milk that much (Yeah!) after 3 years of not having it, so there's not a lot of that in his diet unless it's baked into cake or something. We eat as close to his IGG as possible, but if it's not available (example: Friends have him over to swim and serve mac n cheese, I'm not looking at them like they are the anti-Christ and frantically calling the mom in advance to ask if she minds if I pack him my alternative of Whole Foods special line of "Gluten Free Cardboard Costs More Than Your L.A. mortgage Shit Mac N Cheese" so he doesn't feel left out. You know... them with the neon orange and him with a mushy mass of pasta resembling a cross between lard and peed on Cheesits.
I, too, am staying away from the artificial colors and flavors. Halloween is my nightmare. I need to sell my book so that every October I can take a cruise to Mexico for seven days after Tic or Treating.
Regarding if my son comes up with new tics: Yes when he was your son's age. We went from blinking to back and forth neck stretches to shoulder shrugs to stomach tensing. There's been the dreaded head bob and the worst - the eye roll. We've had throat clears and coughs, mmmms and huhs and growly talking. Now, it's mostly the growly talking (which sounds awful.. it's not that loud... kind of like speech occasionally interrupted with long throat clears) and shoulder tensing. Some side to side eyes. Occasional mouth stretches. Again, I hope I'm not scaring you, because all of these tics are NEVER all at once and they are never that loud and only are really obvious to the public maybe 10% of the time when the weather is bad and the universe has vowed to torture me on really bad PMS days and when my husband's plane is stranded on the tarmac in Germany due to volcanic eruption.
He changes his tics every sevenish days or so. Don't get too comfy with your son's. Like an evil lover, just when you are ready to accept that bad boy for all his faults and find him endearing he'll leave you totally stranded without a note, sending to your door step his wicked twin brother.
Kids never asked him about tics in preschool or kinder. By first grade they did ask. Some made fun of him. They told him he looked stupid for rolling his eyes. I only found out about this because these kids are notorious shits anyway so I asked Stink about them one day. He was very nonplussed and truly not bothered. (I know because his behavior did not go down hill, nor his emotions. Kid at 6 are too straight forward to be secretive about this kind of stuff.)
His response was "Dude, I have tics. Jesus made me this way." He was more concerned they knew who Jesus was then the definition of Tourettes. (And no, I'm not some holy roller Christian. My husband is a non-believer and I am a desperately clinging Catholic who is happy that faith has blessed Stink with peace and more confidence than a non-fixed hound in a room full of mating Beagles. My way is not for everyone.)
My husband is not bothered by the tics at all. He has fully accepted them. He HAS NOT accepted that I still get bugged by them on ocassion but has improved vastly since this roller coaster started. Now, on a bad tic day, he hands me a glass of wine and some frozen chocolate then quickly retreats to Star Trek on Tivo.
I hope this helps? I am off to the thrift store before it closes because I am an addict. Talk soon. Hang tough, girl!
Readers, until next time, remember: A kid who tics with confidence rocks over a non-ticking insecure wuss bag.
* Photo taken at our cabin this summer. Pip just turned 6. I can't lie: These kids adore each other... it isn't just the photo. Tics do not even get in the way of the complete admiration, respect and non-stop giggly obsession my six year old has for my seven year old. Just look at those faces! (Oh.. the pancakes...non-gluten free... helped also.)