Parenting While Tourettic 1
There are a ton of resources online for parents whose kids have TS, and rightly so. Every child with Tourette who is loved and supported from diagnosis day on is a child who will grow up loving themself, TS and all. Unquestionably good. But what about the opposite situation? What if, on top of all the challenges of becoming a new parent, you're also a person with Tourette Syndrome? I sure don't have all the answers, but I'm going to share my observations, strategies, fears, and coping mechanisms with you here. Away we go!
Congratulations! You're going to be a parent! It's going to be great! Awful challenges that turn out to be totally worth it! A strengthened bond with your partner when your baby is crying and you agree to ignore it for another five minutes! Changing diapers, which it turns out never gets less gross! The certain knowledge that sleep is for the weak and that there is, in fact an amount of spit-up you can tolerate on your clothes without getting changed! And on top of all that unconquerable joy, you also have Tourette Syndrome! Congratulations again! Your challenges just became more challenging, but fear not! The challenges you've faced because of your Tourette Syndrome have prepared you for this!
My tics have picked up pretty noticeably since my son was born a little over two years ago. Kind of like how people say that being nervous before a big performance or a big game just means you care, I think my uptick in tics is related to the pressure I put on myself to be a good dad. It's a pressure that I'm sure 99% of new parents/parents-to-be also feel. The difference for me/us is that when I/we feel pressure, I/we externalize it in the form of tics. Even in the months leading up to my son's birth, I noticed an increase in my tics (even though I hadn't been officially diagnosed yet). I ticced a whole bunch while my wife was in labor, but I swear that when my son was born I was so ecstatic that not even fifty thousand volts of electricity could have made me move a muscle. I believe you only get a few transcendent moments in a lifetime: falling in love, achieving a long-held life's goal, marrying your soulmate, and whatever else floats your own U.S.S. Transcendent. For me, my son being born briefly wiped away all the things I'd been up to that moment in my life, and for a short time I was wholly and completely only a father. It was 100% of who I was, and tics were the farthest thing from my mind. I was also in freaking awe of my wife, who MADE A PERSON. I'm always aware of my tics. All the time. I notice every little movement. I feel and hear every sound I make. I swear to you, though, for about an hour or so after my son was born, I felt none of that. I was too busy being in love with this nearly eleven pound little human who, at less than five minutes old, did a push-up while the nurses checked the alignment of his spine.
All ecstacies must come to an end, however, and thus began the act of parenting. The single biggest influencer of my tics is how much sleep I get. Bar none, by leaps and bounds. If I get a solid eight hours, I know in my head (it might be a self-fulfilling prophecy at this point) that I'll have a good tic day, barring some unforseen event. Sure, I'm pretty much a wreck by 9pm on even the best days, but I know I'll be able to get through work and any other parts of my day in decent shape.
Listen, here's the God's honest truth: everything you've heard about how you'll sleep when you have a newborn is pretty accurate. It stinks. I'm basing this statement on our experiences with Charlie and with experiences that have been shared with me by family and friends. It can be better or worse depending on whether mom is nursing or not, but still: it's rough. If your sleep affects your tics as much as it does mine, be prepared for the fallout. My wife nursed, so most of the burden of taking care of Charlie at night fell to her, even if I was helping out by getting him in and out of his bassinet and changing diapers and whatnot. She was an is a rockstar, and ladies: you're all miraculous. Charlie didn't start sleeping through the night until he was around five months old, and until then neither of us slept a whole lot. If he ever slept four hours at a clip we felt like we'd hit every Powerball jackpot that had ever been hit, all at once. My tics were bad most of that time and they improved noticeably after he started sleeping more. So if you're a Touretter who is about to become a parent, prepare for the possibility that your new sleep schedule will affect your tics. Maybe talk to your healthcare provider about medication adjustments you can make prior to becoming a parent, and talk to your spouse beforehand about how your tics might be affected by your change in sleeping habits. There's not a whole lot you can do about it, because a hungry baby is gonna cry and need to be fed, like it or not. The upside is that once baby starts sleeping through the night, it's like the heavens open up and you can hear all of the the Lord's angels singing Hallelujah.
Aside from the change in sleep schedule, I remember feeling a lot of stress and anxiety before and immediately after Charlie was born regarding the sheer magnitude of the changes about to arrive in my life. I thrive on regularity and routine, and the idea/reality of being responsible for another whole human who didn't even exist before today was overwhelming. No matter how much I imagined what it would be like, the reality of being a parent was and is so consuming (in a good way!) that it blew my sense of normalcy out of the water. It was a tough go for a while, and I eventually ended up with sort of a truce with my TS and my need for routine: the new routine was that there was no routine, at least not in the very beginning. As his sleeping pattern started to solidify, things got easier. My tics were fairly pronounced for the first few months of Charlie's life, but I like to think that I also rose to the challenge of being a good new parent.
Now, there's also the matter of actually ticcing while parenting. I have some fairly pronounced arm and hand and shoulder tics, and those can range from inconvenient to dangerous with a newborn, even if he's eleven pounds and built like a tank. I was diagnosed at 37, when Charlie was a little over four months old. I remember being pretty upset that night as I held him in our kitchen, talking to my wife about something or other when I realized that I didn't really have most of my middle-body motor tics when I'd hold him. I teared up right there in the kitchen, just so grateful that I could exercise at least this small bit of control over my tics while I held my son. Don't get me wrong, I'd still tic. My shoulders would still shrug of their own volition, my eyebrows would still shoot up and down, and I'd blink and stare into lights all the time. I was totally fine with those tics and still get a little misty-eyed when I think about the effect he had on me.
I still tic around my son, who is now a little over two. I remember a time about 8ish months ago when my arm fling tic caught him right on the top of the head. I didn't realize he was standing right next to me under my arm, and my arm just punched down real quick. At the time, Charlie was at the perfect height so the very bottom of the motion of my tic was also the veeeeery top of his head. I didn't get him hard, and he just looked up at me, confused. I felt immediately bad about it even though he wasn't even a little distressed. I've found over time that my more noticeable arm and hand tics are replaced by other motor/verbal tics while I'm farting around with him, and I hope other TS parents are lucky enough to experience the same thing.
Going forward, my main concern about being a parent with Tourette is that Charlie will be embarrassed by me. I'm starting to realize that I tic constantly constantly constantly, probably dozens of time a minute. They can be small ones, like my eyebrows and my blinks, or they can be big ones like my head shake or my shoulder shrug. I don't want him to be in a position where he has to explain my tics to his friends, and I also worry that being thought "weird" in the eyes of other parents will have a social impact on him. I understand that to him, the fact that dad tics will be, literally, unremarkable. Like, not worthy of comment. It's just how I'll have always been to him, and I love that. I worry, though, about the first time he realizes there's something different about me and how I'll react to it. I don't even know how I'll explain it, though I guess there will be different conversations when he's at different ages. I want to raise a kind, compassionate son, and I hope that one of the upsides of my having Tourette will be that he grows up accepting people with differences.
Finally, how has Tourette prepared you for being a parent? EASY? You think taking a phone call while a baby cries in the background is hard? HA! Try taking a phone call while fighting off the constant urge to drop or throw the phone! Do you think not sleeping will be awful? DOUBLE HA! If you're anything like me, your sleep has been terrible forever anyway! Do you worry about people giving you judgy looks when you and your spouse and your baby are in a restaurant and your sweet bambino start shrieking at the tops of their lungs!? TRIPLE HA! I've been getting weird looks in public spaces for as long as I can remember! Bring it on, Mr. "It's Rude of You to Bring A Crying Baby to a Restaurant, Now Please Let Me Enjoy Messing With My Phone While I Ignore My Wife and Kids"! Honestly, and really finally, I think the greatest thing I've learned from having TS is patience, and there is no single thing that will serve you better than patience when you have a baby. The gauntlet of life with Tourette has been preparing you for parenthood this whole time. You can do this.
(A quick P.S. - You'll notice I titled this post "Parenting While Tourettic 1" If this blog is still around in a year or two years or three years, I'll keep adding to this series.)
Congratulations! You're going to be a parent! It's going to be great! Awful challenges that turn out to be totally worth it! A strengthened bond with your partner when your baby is crying and you agree to ignore it for another five minutes! Changing diapers, which it turns out never gets less gross! The certain knowledge that sleep is for the weak and that there is, in fact an amount of spit-up you can tolerate on your clothes without getting changed! And on top of all that unconquerable joy, you also have Tourette Syndrome! Congratulations again! Your challenges just became more challenging, but fear not! The challenges you've faced because of your Tourette Syndrome have prepared you for this!
My tics have picked up pretty noticeably since my son was born a little over two years ago. Kind of like how people say that being nervous before a big performance or a big game just means you care, I think my uptick in tics is related to the pressure I put on myself to be a good dad. It's a pressure that I'm sure 99% of new parents/parents-to-be also feel. The difference for me/us is that when I/we feel pressure, I/we externalize it in the form of tics. Even in the months leading up to my son's birth, I noticed an increase in my tics (even though I hadn't been officially diagnosed yet). I ticced a whole bunch while my wife was in labor, but I swear that when my son was born I was so ecstatic that not even fifty thousand volts of electricity could have made me move a muscle. I believe you only get a few transcendent moments in a lifetime: falling in love, achieving a long-held life's goal, marrying your soulmate, and whatever else floats your own U.S.S. Transcendent. For me, my son being born briefly wiped away all the things I'd been up to that moment in my life, and for a short time I was wholly and completely only a father. It was 100% of who I was, and tics were the farthest thing from my mind. I was also in freaking awe of my wife, who MADE A PERSON. I'm always aware of my tics. All the time. I notice every little movement. I feel and hear every sound I make. I swear to you, though, for about an hour or so after my son was born, I felt none of that. I was too busy being in love with this nearly eleven pound little human who, at less than five minutes old, did a push-up while the nurses checked the alignment of his spine.
All ecstacies must come to an end, however, and thus began the act of parenting. The single biggest influencer of my tics is how much sleep I get. Bar none, by leaps and bounds. If I get a solid eight hours, I know in my head (it might be a self-fulfilling prophecy at this point) that I'll have a good tic day, barring some unforseen event. Sure, I'm pretty much a wreck by 9pm on even the best days, but I know I'll be able to get through work and any other parts of my day in decent shape.
Listen, here's the God's honest truth: everything you've heard about how you'll sleep when you have a newborn is pretty accurate. It stinks. I'm basing this statement on our experiences with Charlie and with experiences that have been shared with me by family and friends. It can be better or worse depending on whether mom is nursing or not, but still: it's rough. If your sleep affects your tics as much as it does mine, be prepared for the fallout. My wife nursed, so most of the burden of taking care of Charlie at night fell to her, even if I was helping out by getting him in and out of his bassinet and changing diapers and whatnot. She was an is a rockstar, and ladies: you're all miraculous. Charlie didn't start sleeping through the night until he was around five months old, and until then neither of us slept a whole lot. If he ever slept four hours at a clip we felt like we'd hit every Powerball jackpot that had ever been hit, all at once. My tics were bad most of that time and they improved noticeably after he started sleeping more. So if you're a Touretter who is about to become a parent, prepare for the possibility that your new sleep schedule will affect your tics. Maybe talk to your healthcare provider about medication adjustments you can make prior to becoming a parent, and talk to your spouse beforehand about how your tics might be affected by your change in sleeping habits. There's not a whole lot you can do about it, because a hungry baby is gonna cry and need to be fed, like it or not. The upside is that once baby starts sleeping through the night, it's like the heavens open up and you can hear all of the the Lord's angels singing Hallelujah.
Aside from the change in sleep schedule, I remember feeling a lot of stress and anxiety before and immediately after Charlie was born regarding the sheer magnitude of the changes about to arrive in my life. I thrive on regularity and routine, and the idea/reality of being responsible for another whole human who didn't even exist before today was overwhelming. No matter how much I imagined what it would be like, the reality of being a parent was and is so consuming (in a good way!) that it blew my sense of normalcy out of the water. It was a tough go for a while, and I eventually ended up with sort of a truce with my TS and my need for routine: the new routine was that there was no routine, at least not in the very beginning. As his sleeping pattern started to solidify, things got easier. My tics were fairly pronounced for the first few months of Charlie's life, but I like to think that I also rose to the challenge of being a good new parent.
Now, there's also the matter of actually ticcing while parenting. I have some fairly pronounced arm and hand and shoulder tics, and those can range from inconvenient to dangerous with a newborn, even if he's eleven pounds and built like a tank. I was diagnosed at 37, when Charlie was a little over four months old. I remember being pretty upset that night as I held him in our kitchen, talking to my wife about something or other when I realized that I didn't really have most of my middle-body motor tics when I'd hold him. I teared up right there in the kitchen, just so grateful that I could exercise at least this small bit of control over my tics while I held my son. Don't get me wrong, I'd still tic. My shoulders would still shrug of their own volition, my eyebrows would still shoot up and down, and I'd blink and stare into lights all the time. I was totally fine with those tics and still get a little misty-eyed when I think about the effect he had on me.
I still tic around my son, who is now a little over two. I remember a time about 8ish months ago when my arm fling tic caught him right on the top of the head. I didn't realize he was standing right next to me under my arm, and my arm just punched down real quick. At the time, Charlie was at the perfect height so the very bottom of the motion of my tic was also the veeeeery top of his head. I didn't get him hard, and he just looked up at me, confused. I felt immediately bad about it even though he wasn't even a little distressed. I've found over time that my more noticeable arm and hand tics are replaced by other motor/verbal tics while I'm farting around with him, and I hope other TS parents are lucky enough to experience the same thing.
Going forward, my main concern about being a parent with Tourette is that Charlie will be embarrassed by me. I'm starting to realize that I tic constantly constantly constantly, probably dozens of time a minute. They can be small ones, like my eyebrows and my blinks, or they can be big ones like my head shake or my shoulder shrug. I don't want him to be in a position where he has to explain my tics to his friends, and I also worry that being thought "weird" in the eyes of other parents will have a social impact on him. I understand that to him, the fact that dad tics will be, literally, unremarkable. Like, not worthy of comment. It's just how I'll have always been to him, and I love that. I worry, though, about the first time he realizes there's something different about me and how I'll react to it. I don't even know how I'll explain it, though I guess there will be different conversations when he's at different ages. I want to raise a kind, compassionate son, and I hope that one of the upsides of my having Tourette will be that he grows up accepting people with differences.
Finally, how has Tourette prepared you for being a parent? EASY? You think taking a phone call while a baby cries in the background is hard? HA! Try taking a phone call while fighting off the constant urge to drop or throw the phone! Do you think not sleeping will be awful? DOUBLE HA! If you're anything like me, your sleep has been terrible forever anyway! Do you worry about people giving you judgy looks when you and your spouse and your baby are in a restaurant and your sweet bambino start shrieking at the tops of their lungs!? TRIPLE HA! I've been getting weird looks in public spaces for as long as I can remember! Bring it on, Mr. "It's Rude of You to Bring A Crying Baby to a Restaurant, Now Please Let Me Enjoy Messing With My Phone While I Ignore My Wife and Kids"! Honestly, and really finally, I think the greatest thing I've learned from having TS is patience, and there is no single thing that will serve you better than patience when you have a baby. The gauntlet of life with Tourette has been preparing you for parenthood this whole time. You can do this.
(A quick P.S. - You'll notice I titled this post "Parenting While Tourettic 1" If this blog is still around in a year or two years or three years, I'll keep adding to this series.)
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