The problem with harbingers is that we recognize them only in retrospect. I did not know that Tourette Syndrome affected children until I saw a poster on the train I took to work every morning. It featured a small boy gazing out from the wall, abashed; the caption read: “Maybe he can’t ‘just stop it.’ Maybe it’s TS.” I mentally congratulated the advertising team on the snappy rebranding of a disability usually associated with dirty old men, and went back to my New Yorker. A few months later, when my eight-year-old daughter started humming, I didn’t think about Tourette Syndrome. I thought, “For the love of God, stop humming.”
El did stop humming. Then, around Christmas, she started again. Soon the humming became a sort of wordless singing. I called our pediatrician, who told me that it was common for a child El’s age to develop a vocal tic. If it lasted more than a few weeks, I should call back. I called back when the singing sharpened into something that sounded like barking. My daughter cannot be barking, I thought. This cannot be real. I am a writer and a teacher of writing, but I had no words to describe the noises El was making. I couldn’t tell her it would be okay, because I had no idea what “it” was, nor could I describe what was happening to our family or close friends in any way that they could understand. El did not seem to be sick; it was more as if she was malfunctioning, like a stereo speaker spitting feedback, or a car with a broken clutch.
We had just moved from suburban New Jersey to Brooklyn a few months before, and had just gotten used to the hum of the Brooklyn Queens Expressway when El’s noises began to drown it out. I had hedged about making a move to the city for over a year. While it would make almost all aspects of my own life easier, it would make my daughters’ lives much more complicated. It meant exchanging a school with its own nature preserve for what looked like a prison yard, and leaving the sort of neighbors we could depend on in any emergency for friends who, while I’d known them for years, had never even met my children. Then a promotion made the choice for me. At first, I was amazed by the ease of my daughters’ transition — new house, new school, new friends — but when El’s sounds started, all the complications I thought we’d avoided caught up with us, big time. El had been popular enough at her old school to turn yelping into a trend, but now kids were starting to stare. I couldn’t blame them, really. Every time she yelped, I cringed, and I hated myself for cringing.
I wasn’t used to worrying about El. In my mind, her older sister, Em, was the complicated one. Em became extraordinarily verbal at a very young age, making it hard for her to relate to most other children. I’d pick her up at birthday parties only to find her in the kitchen, chatting with the adults. Usually they thought she was a hoot, but other times they regarded her as uncannily precocious — as did her peers, not that they had the language to explain why. By the age of ten, Em was a coltish 5’4’’, which certainly didn’t make it any easier to fit in. She read, she drew, and she tried to ignore the contempt of the other girls. In short, she was exactly like I was at her age, when a delegation of my “friends” boycotted our school’s essay contest because I always won. I tried to tell Em that I knew it was hard, but things would be okay. I refrained, however, from mentioning how long that might take.
El was different. Or rather, I should say, she wasn’t different, the way I considered Em and myself to be different. She was blonde and blue eyed, her height and weight fell right on the 50th percentile, and the oohing and aahing her Gerber-baby looks had elicited since birth evolved into an army of friends and a constant stream of invitations. She was by no means a mean girl; in fact, the parents of socially struggling children often requested that they be placed in El’s class, because they knew she would protect them. Until the tics broke her stride, she exuded a sense of being at home in the world that her sister and I had never known. Then the daughter whose happiness I’d taken for granted started crying every day after school. For me this was almost as disturbing as the noises she couldn’t stop making.
I was given the names of developmental neurologists, none of whom took our insurance or could see us in less than three months. One long bad day when I had almost given up, a wonderful doctor told me that El’s symptoms sounded like Tourette Syndrome. (When you’re worried about brain tumors, Tourette Syndrome seems like good news.) We began behavioral therapy, in which El practiced controlled responses — deep breathing, gentle movements — which she performed when she felt the urge to tic. It wasn’t easy. Just as she’d mastered one tic, another one would pop up in its place, whack-a-mole style. And it wasn’t just the noises; sometimes she rolled her eyes, or flicked her wrists. Tourettes can be treated with medication, but the drugs can be debilitating. Besides, without medication I could convince myself that this was just a phase. The clouds would clear from El’s sky and she’d be herself again.
As I struggled to help one daughter adjust, the other changed without me. Em was much happier in her new school — not the belle of the ball, as she’d be the first to admit, but no longer mocked or left out. She still draws pictures at recess instead of playing games with the other kids, but now they wander over to watch her, and sometimes even pay her a dollar for a drawing they particularly like. The city suits her for the very reasons the suburbs excluded her. When she submitted a sketch of a ghost to a contest to create a new school mascot (School Spirit! GET IT??!!), they didn’t choose it, but at least they laughed. Turns out, Em’s not that much like me. I never would have been that brave.
“Raising daughters is like blowing glass. There’s a painful immediacy to every stage, fragility born from sand and fire.” I wrote that in 1990, when I was twenty and pretentious and knew nothing about daughters except that being one sometimes sucked. I’ve been a mom for more than a decade now. I wish I could say that Younger Me had it all wrong, that mothering isn’t difficult, happiness hard-earned and precarious. I know how incredibly lucky I am. If Tourette Syndrome is the worst thing lurking, I’ll take it with a smile. Even so, I think the skinny bitch was on to something. Our daughters are our daughters, of course, but they’re also girls, and even through the lens of unconditional love we sometimes see what other girls see. I would like to believe that El has lots of friends because she’s funny and generous, not because she looks like Barbie’s kid sister, but I have to admit that it’s probably both. I hope that Em will meet other girls who are as tall as their vocabularies, but she hasn’t yet. (She looks like her best friend’s babysitter.) And El will not be herself “again” because she’s been herself all along. I’m still not used to the fact that even her silence is never silent — she tics when she reads, when she watches TV, and sometimes even when she sleeps. (Like the poster said, she can’t ‘just stop it.’ It’s TS.) But if she’s okay with it, and these days she seems to be, I am, too.
Now I’m glad we moved. New York is, after all, a smorgasbord of disjointed noises. Like the city, El’s sounds are loudest when she’s happy, with no need for control or fear of judgment. The other day, while walking through Rockefeller Center on the way to her doctor’s office, she emitted a flood of yelps that were somehow in tune with the street and the people. Every once in a while, when we were waiting for a light, someone looked over to seek the source. No one frowned or backed away from her. The light changed, and we all moved on.
Beth Boyle Machlan teaches writing and rewriting to college freshmen in New York City. She has written for The Awl, the LA Review of Books, and Nerve.com. Last week, she and her daughters assembled an IKEA sectional in less than 20 minutes.
More information about Tourette Syndrome is available at the Tourette Syndrome Association.
Photo by Alexei Novikov, via Shutterstock
I'm so glad this story had a happy ending. I don't know if there's any worse feeling than not fitting in with your peers, except perhaps the feeling that your child won't fit in or isn't fitting in with their peers.
I'm not a parent, but I like this story a lot.
@ImASadGiraffe Samesies.
Nice article. It would be too old for your daughter, but there's a very good YA novel called "Jerk, California" where the main character has Tourette's syndrome, but the story is about a bunch of other stuff, not just the "struggle" with Tourette's, which I really value.
@Ellie Thank you!!!!
@C_Webb Have you seen the documentary "Different is the new Normal"?
@DrFeelGood No, not yet. I actually went through a period when I couldn't look at other children (or adults) with tics in videos from the TSA, etc., because they made me cry. Now that we're a little more grounded, El and I will check it out. Thanks for reminding me!
@C_Webb I have no idea how true to life it is in terms of TS, but my brain made the link to Motherless Brooklyn by Jonathan Lethem - it's set in Brooklyn and the protagonist has Tourette Syndrome! Not a kid's book, but still ace.
@rayray I got through ten pages of that before the severity of the guy's tics made me borderline hysterical. Love Lethem, but couldn't read on.
@C_Webb Fair enough! It's a long time since I read it, and I have no experience with TS, so. But yes, Lethem is brill. As is this piece.
@rayray “Practically speaking, it was one thing to stroke Leshawn Montrose’s arm, or even to kiss him, another entirely to walk up and call him Shefawn Mongoose, or Lefthand Moonprose, or Fuckyou Roseprawn. So, though I collected words, treasured them like a drooling sadistic captor, bending them, melting them down, filing off their edges, stacking them into teetering piles, before release I translated them into physical performance, manic choreography.” LOVE Jonathan Lethem and MB.
This gave me happy chills - absolutely beautiful.
Anyone who can assemble anything from Ikea with a family member, let alone two AND in less than 20 minutes?
Gifted.
@Party Falcon I've seen friendships and relationships dissolve over building IKEA furniture. It's that damn Allen wrench.
@Party Falcon OK, I cannot tell a lie. It pretty much came whole out of very big boxes, but we did have to hook the parts together, and we ended up with a bunch of tiny screws that must go somewhere. Time will tell.
"Barbie’s kid sister" has a NAME, you know. SKIPPER. She had (has?) the flat feet that don't fit into Barbie's shoes.
(Kidding aside, nice story. I don't like kids and I have a hard time imagining a day that I'll ever have any, let alone describe children in such glowing terms, but I'm glad that Tourette hasn't hampered her seriously.)
@figwiggin Hi, this is the author. YOU ARE TOTALLY RIGHT. It fell right out of my head. Or maybe El looks like Barbie's other kid sister?
@C_Webb THIS IS C_WEBB??!
@C_Webb I wonder how many kid sisters Barbie actually has. How many pretty ones, prettier than her, Barbie has chained in the basement, who haven't seen the light of day since they hit puberty and their feet started to transform...
@meli:s Um, yes! @figwiggin: MY THOUGHTS EXACTLY. Luckily, El is handy with a blowtorch.
@C_Webb STACY!!!! Or Stacey. I don't know. But definitely Stac(e)y.
@figwiggin @c_Webb The Barbie Family: Barbie, Skipper, Todd, Stacy (stacey?) and Kelly. I am not proud of this knowledge.
Anyway, I loved reading this!
@Mariajoseh I kept wanting to say "Trigger," and then thought Gee, that can't be right ...
@C_Webb I WISH Barbie's kid sister was named Trigger.
@figwiggin @ C_Webb I am really interested in Todd, because Chicharito Hernández, awesome mexican soccer player, looks JUST LIKE HIM, and I want(I need) my entire country to aknowledge it. Here is proof: http://bit.ly/zlPjwC
@figwiggin I'm pretty sure you're getting the Barbie clan confused with the Palin clan.
Stories like this make me consider for a moment that having kids could be awesome.
@aproprose Having children is the best thing. But do not disregard, they leave you hostage to fortune, as the saying goes. Because once you have children, instead of reading this and thinking, "This, this could happen, and would be hard," you think, "I would take this, and deal with it and be grateful. This instead of cancer or an accident at the pool." The joy of loving your children is the only thing that can make the pain of their pain and the fear of what can happen to them worth it.
This is great, and really beautifully written. I love also that their names suggest a whole little alphabet: L, M, N O P .... definitely the best part of the alphabet too.
@aintquite Oh dear god no. (Then again, the old woman who lived in a shoe was a single mom too, right?)
@aintquite Like the book "Ella Minnow Pea." It's cute.
My mom hates it when I bark. I'm just kind of proud of my bark. It's pretty authentic. Sometimes I'll bark back at dogs and stuff if they are gettin' lippy.
Anyways, I wonder if my mom worried about me in school? She was definitely much cooler/more social in her high school days than I ever was. But I never worried/thought about it much. I had friends, it was fine. Being a parent seems hard and confusing. Then again, Mom isn't really much of a worrier in general. She did ask me a couple times if I was being bullied. "uhhh. no?"
tangentially: I never understood why people like small private schools (for high school) so much? The charms of big public schools are great for most kids - it's a good lesson in diversity, learning about people and how to work with them gracefully, but just, generally, a good environment for kids, because you'll find your people, who get you/accept you and everyone is to busy chilling with their people and doing their own thing to make trouble, really, for the others. But if you're at a small school, and you don't fit in, then you just don't fit, and you get to be lonely and miserable for four years. Is that not true? I don't know, that's just what it seems like.
@Marzipan In Los Angeles, those big public schools have terrible education, drugs, and a lot violence. So that's a reason for private schools!
@Marzipan That's true in primary school as well. There were 11 girls and 9 boys in my class from 1st through 8th grade. I didn't fit in by 4th grade and never recovered.
@Marzipan Other than the dysfunction noted above, I agree. I think a small school is reassuring to parents, because THEY can know everyone -- no wondering about who these random people are who start popping up in your kid's life when they're in high school and you're no longer meeting the parents at playdates or whatever.
My best friend in middle school went to a Catholic school with eight or nine girls in her grade. She was supposed to stay K-8 but got caught up in girl drama in 6th grade and transferred to a public middle school with 200-ish kids per grade. She (and I) are possibly the only people to still rave about how much we completely LOVED public middle school because we met so many new people and weren't confined to the tiny elementary social circles.
I was a decidedly odd duck in high school but the huge environment was definitely good for that. I had a few equally strange friends, a lot of acquaintances, and it was too big for cliques and bullying ot be a serious problem.
The downside is that some kids do get lost rather than thriving, which I think has more to do with teachers being able to keep track of a class of 50 kids better than a class of 500.
@Marzipan To reply to your tangent, I went to a small private school from grades 10-12 and I thought it was great. While I had some very good teachers in public school, the private school teachers were almost universally amazing (a lot of them had left public school and taken a paycut to have more freedom and autonomy) and the classes were small and much livelier. My grade was weird, though... there were 45 of us and I felt like pretty much everyone felt like an outsider. Which was in some ways more comforting than feeling like I didn't quite fit in a class of 400.
@no way We had essentially the same 50 kids from kinder to the end of middle, and then most of us went on to the same blessedly-larger high school. So, uh, that was bad enough (outcast from the start, woohoo) and I cannot even conceive of the trauma of only 20!
@Marzipan I dunno, I went to small schools and it was mostly fine to great. I think it depends more on the individual, their school, and the people in their class than it does on overarching principles. I absolutely LOVED my tiny high school (each grade was about 60), but my good friend whom I've known since preschool, and who went there too a grade below me, hated it. The biggest difference was, the kids in my class were mostly all right or even cool, and the kids in her class were not. Sometimes it's as simple as that.
@miwome It so depends on the person and the situation. I went from a giant suburban high school to a small Catholic one and it was one of the better decisions I've made. Granted I had started as a new girl at the giant high school, but I was totally lost in the shuffle, overwhelmed by the sheer size of the building, and underserved by the teachers (who, to be fair, had to gallop through state-mandated test prep or risk losing their job). I had no friends in a class of 500. My new school was small enough that I could join a sports team without having played that sport since birth, so I got friends and exercise and team spirit. The teachers were much better. The students by and large wanted to learn, at least enough to get good grades, which fostered a really good learning environment. I sound like an admissions brochure, but yeah -- everybody's different.
@Marzipan I went to a small private school (about 70 in our class) and was miserable. I didn't fit into any of the groups because I had no interest in playing field hockey, smoking behind the maintenance shed, getting pregnant, or shopping as a bloodsport. Apparently those were how people divided out. To make matters worse, I was an only child and lived way out in the country and had no money that didn't go to pay for gas. So, I ate my lunch during my free period to avoid having to ask if I could sit with a group at lunch, and hung out in the art room (where the teacher blessedly let me have free reign of the supplies and otherwise stayed out of it). I was lonely for all four years, and not quite miserable because I have a great capacity to entertain myself. I don't think I realized until college what I was missing.
@TooCool4School Back in olden times, when I started 9th grade, it was the private school kids who had all of the experience with drugs and sex, not us public school ones!
@Lily Rowan Same here. The private school kids were badass in all the right ways.
@TooCool4School There are a lot of excellent magnet programs at large public high schools in Los Angeles (I went to three of them!). Yay, public education!
@Marzipan I went to a small public high school (68 in my class; the following year was 112 and people kept talking about how HUGE that class was) and hated it. I didn't fit in from the first day of 1st grade, and I was stuck with the same classmates (+/-3) until I graduated. MISERY.
@Marzipan I'm right there with you. At my large, quasi-urban-quasi-suburban public school, I graduated with over 700 people (and our class started with 900-some... drop-out levels weren't great.) It was GREAT for me. Even though the area wasn't wealthy, the school district could afford to have lots of sports, clubs, and activities. I could choose from 4 foreign languages and lots of AP classes. I had a diverse group of friends and acquaintances, and I find it easy to relate to people with a huge range of backgrounds.
What sucked were the junior high years when all my academic classes were with the same 20 kids in the gifted & talented program. I was an outcast to them, and I had to spend almost my whole day surrounded by their contempt. It was only once we got some space in high school that we became a lot more friendly to each other.
But I also liked going to a college smaller than my high school, and some people loved their tiny high schools. And a lot of kids got totally lost in the shuffle at my school. So, yeah- everyone's different!
ahhh i like this article! i don't feel a lot of tourette's solidarity in my life, since my tics aren't like outrageous and it's not something that makes itself super apparent. i remember when i was a kid, feeling so uncomfortable sitting in class and knowing everyone could see the weird thing i was doing with my mouth and wanting to hide it so bad. even now, on an exercise bike in the gym, knowing people can probably hear my little throat clicks (??? it's the best way to describe them) and wondering exactly how weird they think i am, it can definitely take a toll on my self-esteem. i've even had a friend call me out in kind of a mean way because he thought i was scoffing at him, since one of my tics really sounds like that, and feeling that misunderstood can be so painful in that moment. so i am really glad to read about a little girl who is getting the support she needs early on.
sorry, that was mostly unrelated to the article, i just don't get to talk about this much at all!
@tvc015 I think it's totally related! I'm sorry you had a hard time, and you're right, there's so little conversation about Tourettes! El totally has a textbook case, but her pediatrician had no clue when I described the symptoms (which I later reamed them for, BTW). I hope you have some support, because it's really misunderstood -- it's sometimes like she has a condition only because she bothers other people, which is bizarre. (Movie theaters have become a kind of horrible experience.)
@tvc015 Sometimes having a mild version of a thing can be more awkward than having the extreme version. Three examples from my own life:
I have mild psoriasis, and when I mention it to a friend-of-a-friend who has it really bad, all over, I just kind of feel like I have to check my privilege.
My brother and mother and uncle all have Asperger's syndrome, but are very high functioning. So, instead of people thinking they have a disorder, they just think they're rude or inconsiderate for missing social cues. Which is sad! Also, they all do mild tics (including throat tics!), which can be difficult for people to comprehend when they otherwise seem "fine".
My pre-school-aged son had Leukemia, which was/is terrible, but he also has the kind that is really treatable and has good outcomes, and he's going to be fine. It's really, really hard for me to complain about the suffering we've been through, because every month we see other kids at the hospital who aren't going to make it. Maybe that's some kind of survivor's guilt? But what we've been through HAS been terrible. And in order to process it, I can't spend my life thinking, "yeah but it could have been so much worse..." I mean, duh, it's still a real burden.
Anyways, I guess my point is, don't be nervous to talk about it! Even if it's not the worse-case scenario, your friends (and potential friends) still probably want to hear about it, understand it, and support you. It must be hard to figure out the balance between defining yourself as someone who has Tourettes and on the other hand not letting it hold you back. And that dilemma, in and of itself, is it's own kind of burden. So yeah, talk about it!
@tvc015 @C_Webb et al: How is Tourette's diagnosed?
@tvc015 I'll have mild Tourette's solidarity with you! I was diagnosed in 4th/5th grade with a wrist/finger-rolling tic and a kind of hard-blinking one, but my most common and long-lasting one has been the throat-clicking/clearing. I think I get a lot of privilege from it since it really does sound like you're just quietly clearing your throat or grunting. A couple side glances here and there, but I was on medication through high school and that helped--well, it helped me to kind of control it/push the tics to after school.
I guess I've mostly grown out of it now in my mid-late 20s, but not completely. Instead of daily tics, I'll get weird clusters of them a couple times a month. I walked through the grocery store freaking out one time -- I'm sure the tics weren't as bad as they felt, but I felt like everyone was looking at me.
It is hard to talk about when the tics aren't outrageous. So few people understand that there are mild forms out there. But then I don't really talk about mine. Most people don't know I have it, so when they find out it's a big production and discussion and Q&A. Which just makes me feel weird...so yeah. I'm not really helping the awareness campaign, I guess.
@laurel To be diagnosed with Tourette's you must have multiple motor tics and at least one vocal tic that are present for more than a year. A neurologist will probably have to do a bunch of rule outs (like brain injuries/tumors mentioned above). Tourette's is just one of a family of tic disorders. The difference between them is the time that you have had the tics, and the number of motor or vocal tics you have. For example, in transient tic syndrome they may go away and reappear, but never lasting more than 1 year. My brother is not diagnosed formally, but we went through all of the rule outs when he was a kid, so its just a matter of some doctor writing it down.
@Nic Knack Yep. Exactly. El has way more vocal tics than motor tics. The motor tics scare me sometimes. Once, she couldn't stop jerking her head; she was in actual pain for a while, and I thought we were going to have to take her to the ER.
Does stress have an impact? Does it manifest itself in a certain age range?
I guess I could go read about it somewhere, but it's so tempting to ask when knowledgable people are right here.
@laurel I'm really hesitant to offer anything that may be taken for truth, so ... the weird thing is, while stress exacerbates El's tics, so does boredom (?). And if she's concentrating she doesn't tic, so we've actually been spared having to get her certified in the school district as "special needs," because for some reason that was the line for her. She is vehemently against anything that might formally separate her from other kids, and I don't blame her. (But if that changes, and she starts yelping throughout a standardized test, will other parents complain? I DONT KNOW!!!!)
@laurel I guess I could comment on the basis of being a graduate student in school psychology! Basically yes, stress totally has an impact. And concentrating on something else sometimes helps, like c_webb mentioned. Sometimes if you suppress your tics, they can come out in a kind of frenzy afterwards.
Tourette's and other tic syndromes typically start when you are a child/adolescent, and about half see improvement or no tics after entering adulthood. But many people continue to exhibit tics throughout their lifetime.
Also, another thing about Tourette's is that many people will also have ADHD or OCD symptoms, because all three affect the same part of the brain: the basil ganglia.
Also like C_webb said in her article, the best treatment outcomes are typically due to psychoeducation (learning about your tics- what affects them and such) and learning a competing motor response. But also, tics are typically replaced overtime so this can be a never-ending battle of sorts.
@tvc015 And here I thought what I went through in fourth grade must have been OCD. El's situation sounds much more like mine than most accounts of OCD I've heard. I was abused, taunted, and despised by all of my classmates for reasons I still don't understand and my teacher, well, let's just say her behavior toward me just made things worse. I developed a series of verbal, motor, and even mental tics (humming, making random sounds, finger snapping, head jerking, counting to 100 over and over in my head). I don't know if I ever told my parents or anyone about them. People definitely noticed but it was never addressed. It didn't go on for more than a few months, though, if I remember correctly. I remember getting just so fed up that I thought angrily to myself, "okay, ENOUGH!" And somehow that did it. I haven't had any tics since. Things didn't otherwise get much better for me for a very long time but at least I wasn't embarrassed to be unable to stop doing weird things with my mouth or hands anymore.
@tvc015 You could tell anyone who hears you at the gym that you're teaching yourself !Kung in your spare time.
I really love this. I've worked with kids with TS before, and this is just such a beautiful story. Both of your daughters seem awesome.
My very favorite thing about New York was that no matter what I was doing (crying on a bus, fighting over a cab, leather-spraying my boots on a siamese standpipe at 1 A.M.), there was always someone else around who was doing something weirder. I definitely think you brought your daughter to the right place.
@Jillsy Sloper Living in a major city, I was initially surprised by the # of people I meet on a regular basis who have untreated or perhaps undiagnosed TS.
This is so beautiful!
You sound like a great mom.
I have a younger brother who has TS. He's in his third year of medical school, living with three of his closest friends, and an all around awesome guy. Your little girl sounds ah-MA-zing, and I have no doubt she'll grow into a fabulous lady with a relatively normal life.
My friend Marc Elliot has Tourette's and gives presentations to schools/businesses/etc about tolerance. He is AMAZING and cute (and lives in NYC). I bet having him come to your daughter's school would be helpful for her and her classmates.
Check him out: http://marcelliot.com/
@MissMetroDC That is so cool! Yeah, El ultimately worked with her great classroom teachers to figure out how to explain TS to her classmates. It wasn't that she got teased so much as they got impatient when she couldn't be quiet.
Wonderful writing and a lovely story -- your family is in the right place.
I suspect your daughters are delightful!
Raising girls is so hard. Trying to find the right balance of self-confidence to do their own thing but still fit in enough to establish the peer relationships that will bolster them. It's a curse and a blessing to have gone through it ourselves.
I really love this whole piece, but the ghost as school spirit slayed me.
@andrea disaster: It's not completely out there. My husband teaches at our local high school, mascot: Grey Ghosts. Never made the connection with 'school spirit' before, though, which is awesome.
This is so beautiful. I have tears.
Lovely piece, thank you so much for sharing your story. I know very little about Tourette Syndrome and this has inspired me to look up more information. Also, thanks to the poster above who suggested "Jerk, California." I've recently fallen in love with good YA stuff and am always looking for recommendations.
Your daughters are blessed to have such a wonderful, thoughtful and understanding mother. Good luck to your family!
@peculiarity totally unrelated, and unlikely you will see this comment, but best YA novel of all time: Staying Fat for Sarah Byrnes. go get it.
I feel like I don't often comment on stories like this but given the recent post soliciting feedback on The Hairpin...I liked this a lot.
@Third Wave Housewife Yes, today has been a good Hairpin day regarding generating original content.
I like this experimental Hairpin, Edith!
This is so beautifully written. I love it and love knowing there are mothers like you.
Both of your daughters seem like very different and genuinely wonderful kids. I wish the best to you and to them as well.
"Our daughters are our daughters, of course, but they’re also girls, and even through the lens of unconditional love we sometimes see what other girls see."
I don't have a daughter with Tourette's, but I have a daughter and a step daughter, ages 10 and 11, and this is one of the most insightful things I've read about raising girls ever. Thank you. And I wish you all the best of luck. Beautiful story.
Nice article.
Just the other day I read this really sweet first person description of living with Tourette's, in the UK Guardian newspaper; it might be of interest:
http://www.guardian.co.uk/lifeandstyle/2012/feb/10/experience-i-say-biscuit-900-times-an-hour
BBM here ... THANK YOU for all the kind words (especially those about my momming)! If I don't thank you individually, it's because I feel foolish over-commenting on my own post. So please know that you are all effing amazing.
Loved this story. My mom has some very subtle tics and I'm always happy to hear people actually talk about Tourette's. Also, your kidlets sound awesome.
I'm pretty sure that my boyfriend of 2 years has Tourette's and reading this has made me even more certain, but he has never mentioned it. I guess I should just ask him but I don't know if I should. It's a shame that not many people talk about it. Thank you for writing about it!
@pdactyl He may not even know, or may never have been diagnosed. There is evidence that it's hereditary, though, so you may want to ask, gently, at some point ...
He has talked about having to see a lot of therapists and such when he was younger, and I came across an old bottle of prescription meds that I later looked up, and it can be used to treat Tourette's. (I wasn't snooping, I swear! He asked me to go find him some aspirin and I came across it while I was searching). I'm just kind of afraid to ask though, in case I'm wrong and he'll wonder where on earth I got that idea. It's just that you'd think it would come up after 2 years together...
@pdactyl I can understand that. If he's open with you about therapy, I'd trust that he'll open up about the rest of it when he's ready. It's not easy.
@pdactyl It could also be another disorder in the aforementioned "tic" family, too, so maybe that's an easier way to broach the topic? i.e. - bringing up a tic rather than asking, "Do you have TS?"
A former roommate (and great friend) of mine has Chronic Motor Tic Disorder, which mostly manifested itself in a mild facial tic, but occasionally became apparent in things like regulating anger and engaging in impulse control, which can also be symptoms within that cluster. It's a helpful thing to know and really understand in trying to live/spend a lot of time with somebody who is even mildly affected.
@HeyThatsMyBike Thanks, that's a great idea! I'll just have to do it really carefully, because he gets upset sometimes when people point it out. I have tried to mention it before but I think I was just to subtle about it.
As the father of two daughters, one of whom has significant mental health issues that go hand-in-hand with a very distinct and vibrant and intensely smart wonderfulness, I truly appreciate this essay. Adjusting to who your kids actually are, sometimes after going through some mourning for what they won't be, and then getting over that grief, is one form of growing up. And it's an ongoing process.
@Kneetoe ... and here come the tears. Best, best wishes to you and your girls. Your comment shows how lucky they are to have you.
@Kneetoe another really nice expression of this sentiment is this poem/essay about children with autism (having worked with a bunch i've seen it passed around a lot)
@Kneetoe Your last sentence is perfect, so right on.
my best friend has Tourette's, and when she (rarely) laments it, I'm reminded that she has it at all. I think we only notice these quirks in strangers in the first few minutes, then move on. Beautiful essay, your daughters sound like strong girls.
I really liked this, thank you for sharing.
I loved this, too. Mad props to you and your level-headed parenting.
And "School Spirit"?! I LOLed. Literally. I scared my cat because I was laughing so hard. That...that is the best school mascot anyone has ever come up with.
This is wonderful and amazing. I'm so glad El and Em have you as a mom. Just to have a mom who works and tries to understand and believes in her daughters and fiercely loves them... you're wonderful. ♥
ETA: ALSO THE SCHOOL SPIRIT. HAHAHA.
@automaticdoor I was going to write pretty much everything you just did, so I think I'll just add a very emphatic "ditto" to this comment thread.
this was wonderful!!! <3
“Raising daughters is like blowing glass. There’s a painful immediacy to every stage, fragility born from sand and fire.” I know you said you wrote this before you had daughters but it really resonates with this mother. I have never been more humbled as I have been becoming a mother. This was a beautiful essay, thank you so much for sharing it.
This was an awesome read and I really enjoyed it. My son has TS, and over the years (he's 14) he has come up with some REALLY interesting noises. Unfortunately he wasn't diagnosed until a few years after his tics became apparent, because he also has ADHD and his doctor kept telling us the vocal tics were a side-effect of his stimulant medications. We basically had to shop around for a doctor who knew what the heck he was looking at and tell him flat out, "We are convinced our child has TS, please help us." So now it's a balancing act with medications for both ADHD and TS, and he's doing really well. Still really vocal in the evenings when the meds wear off, but we're all used to it. I joked the other night that he was kind of like having a really awesome parrot who not only squawks and screeches, but also tells very funny fart jokes.
@jenergy Those are the best kind of parrots :-)
The goalie for the US World Cup soccer (ok football) team, Tim Howard, has Tourettes. There was a cool New Yorker profile on him awhile ago, where he sort of mildly speculates that his Tourettes actually boosts his skills as a goalie. I forget why, something about quick reflexes because of tics, but I remember thinking this was cool and empowering for someone with TS to read. FAMOUS GOALIE!