New Jersey Center for Tourette Syndrome and Associated Disorders
On this insightful episode, I sit down with author Michele Turk to discuss her newly released memoir "What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome." As both a journalist and mom, Michele shares her candid journey navigating the unpredictable waters of raising a child with Tourette's - the challenges, misconceptions, hard-won wisdom, and unexpected gifts. Her story offers an authentic, relatable perspective that will deeply resonate with any parent or loved one supporting someone with Tourette's or other neurodivergent conditions.
Michele Turk has worked as a journalist for three decades, covering parenting, health, and education. Her articles and essays have appeared in Bloomberg Businessweek, Parents, Parenting, the Hartford Courant, Elle, USA Weekend, The Washington Post, Brain, Child, and Next Avenue. She has served as president of the Connecticut Press Club since 2015. Turk grew up in Southern New Jersey and currently lives in Connecticut. Michele’s new book “What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome” will be released on June 4.
Episode Highlights:
[1:29] - Michele's son Michael's shocking Tourette's diagnosis at 11 inspires her memoir.
[3:04] - Unpacking media's harmful Tourette's stereotypes around coprolalia.
[5:44] - Michael's passion for music boosted self-esteem, managed tics.
[9:50] - Michael's hidden perfect pitch revealed through musical focus!
[11:45] - The overlooked strengths and superpowers of neurodivergence.
[13:30] - Hard lessons on compassionately intervening in bullying.
[18:21] - Michele owns missteps like self-criticism, husband frustrations.
[22:53] - Wise strategies for united parenting: couple time, therapy.
[29:13] - Using online communities and orgs as careful informational lifelines.
[33:45] - The paramount need for self-forgiveness in this arduous journey.
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
On this insightful episode, I sit down with author Michele Turk to discuss her newly released memoir "What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome." As both a journalist and mom, Michele shares her candid journey navigating the unpredictable waters of raising a child with Tourette's - the challenges, misconceptions, hard-won wisdom, and unexpected gifts. Her story offers an authentic, relatable perspective that will deeply resonate with any parent or loved one supporting someone with Tourette's or other neurodivergent conditions.
Michele Turk has worked as a journalist for three decades, covering parenting, health, and education. Her articles and essays have appeared in Bloomberg Businessweek, Parents, Parenting, the Hartford Courant, Elle, USA Weekend, The Washington Post, Brain, Child, and Next Avenue. She has served as president of the Connecticut Press Club since 2015. Turk grew up in Southern New Jersey and currently lives in Connecticut. Michele’s new book “What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome” will be released on June 4.
Episode Highlights:
[1:29] - Michele's son Michael's shocking Tourette's diagnosis at 11 inspires her memoir.
[3:04] - Unpacking media's harmful Tourette's stereotypes around coprolalia.
[5:44] - Michael's passion for music boosted self-esteem, managed tics.
[9:50] - Michael's hidden perfect pitch revealed through musical focus!
[11:45] - The overlooked strengths and superpowers of neurodivergence.
[13:30] - Hard lessons on compassionately intervening in bullying.
[18:21] - Michele owns missteps like self-criticism, husband frustrations.
[22:53] - Wise strategies for united parenting: couple time, therapy.
[29:13] - Using online communities and orgs as careful informational lifelines.
[33:45] - The paramount need for self-forgiveness in this arduous journey.
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.
I talked about this in the book a part of that was just that we bring a lot from our birth families and my parents were real worrywarts. And I think I came into that into this parenting thing as a worrywart. And also someone who really doubted my abilities as a mother. We didn't get a diagnosis till Michael was 11. And his school your early school years were a lot of trips to the principal's office. When he was in like first grade or kindergarten, I can't remember which but so I really by the time he was diagnosed, I kind of felt like I was not doing a great job as a mother.
Michael Leopold:
Welcome to the apptech, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Welcome back to the uptick. I am here with Michelle Turk. Michelle has worked as a journalist for three decades covering parenting health and education. She lives in Connecticut and recently wrote a book which will be released on June 4 of this year. The book is called What makes him tick. And Anwar of parenting a child with Tourette Syndrome. Michelle, it's great to have you on the call here.
Michele Turk:
Thanks so much for having me, Michael. I've actually been a listener for a couple of months now. Oh, glad
Michael Leopold:
to hear that. We're always excited to have listeners that are also taking part in being being on this podcast. I'm curious to hear that the story of what really inspired you to put together this book
Michele Turk:
back in 2011. Michael, my Michael, same name. He had had mild motor tics for years, but it really escalated. And he was diagnosed with coprolalia. And it really blindsided me and my husband, and of course, my son and daughter. And as a journalist, I just started scribbling notes, and writing in my journal in real time, because it was just kind of hard to believe what was happening. It's a really bizarre diagnosis at first. So then I even though I'm trained as a journalist, I took a memoir writing and essay writing class about eight months later. And that's really when I started thinking, okay, there might be more to this here. And also, in the meantime, I had been trying to read everything I could about Tourette syndrome, and I realized that there wasn't a book quite like this out there. So it's really the book that I wanted to read back when my son was first diagnosed. And what that book ended up being is it's a blend of the memoir. But I also sprinkle in lots of research and reporting interviews with Tourette experts and so forth. And the goal really is, as always been to help other people whether their child has Tourette syndrome or some other tic disorder, or they're neurodivergent in some way to help them feel less alone, and help parents get through what can be a very challenging time. That's how it all came about.
Michael Leopold:
One of the things you talk a lot about in the book is the media misrepresentations of Tourette. You mentioned the Simpsons episode back in the 90s. That was one of the the earlier examples of the media sensationalizing it playing up coprolalia, things like that. And it's interesting because of at that time, when when Michael was diagnosed, I think you said he was about 11. And going through seeing doctors going all the testing that we do for this before diagnosis happens. How did the media's portrayal of Tourette impact this diagnosis or how you thought about it? Did you say you can have Tourette he doesn't swear, how did those two come together? Yeah,
Michele Turk:
good question. So I'm trying to think back about what I knew about Tourette syndrome at the time. Early on, he did have mild motor tics like eye blinking and facial grimaces. We consulted the pediatrician. We consulted a pediatric neurologist twice, who told that same one who told us that it's common in boys. He'll likely outgrow it. And this is information that a lot of parents I learned and you know, as well are told, I would ask specifically, is it Tourette Syndrome? Could it be Tourette syndrome? I didn't know a whole lot about it. I had a professor in journalism school who had Tourette Syndrome who was very high functioning and inspirational. But I didn't know I knew what most people knew from the media. And those representations are, as you said, it's often misrepresented only about 10% of people with Tourette Syndrome have what's called coprolalia which is the cursing shouting obscenities and other inappropriate words. And so that that actually is what what happened when he was 11. He did start shouting obscenities. And when I did reach out for all sorts of help, I learned as I said that it is rare. Michael is now 25 years old and I think a lot has changed. There's definitely still a stigma surrounding Tourette syndrome. And there are still so many myths and misperceptions out there. No question, but I think that things like your podcast and what the Tourette Association of America is doing in places like the New Jersey Center for Tourette Syndrome, they've done a tremendous job educating the public and the medical community about Tourette syndrome and tic disorders. And I think that, as a result, kids are more likely to get a diagnosis early, but also people are learning more about it. It doesn't hurt that people like Billy Eilish and Lewis Capaldi, have Tourette syndrome and are speaking publicly about it, that will move the needle. Once he
Michael Leopold:
got that diagnosis, going through school having any kind of condition but especially things like like tics, there's really unique challenges there, and also the CO occurring conditions. What did you find over the years really move the needle and benefited Michael,
Michele Turk:
as a parent, the worst thing to see is to watch your child suffer. And early on Michael, he would call himself a freak. I mean, it was it was heartbreaking. So we did immediately, I immediately started looking for help. We went to the local neurologist, I called the yellow Child Study Center, where he eventually ended up being treated by Dr. Robert King, who was wonderful. But I was told it would be a while before he could get in. So I started trying all sorts of things. There's a chapter in the book called throwing spaghetti at the wall. Because all the different things I tried from acupuncture to chiropractic to an elimination diet, Michael did eventually get on a course of medications. And he was on them through his sophomore year in high school. So he's been off of medications for a decade now. But it was trial and error. One of the challenges for me was putting my trust in these doctors. But it was comforting to know that the Child Study Center and Dr. King were renowned threat experts. But also in addition to the prescription medicine. There are definitely other, you know what I would say non traditional sort of therapies that helped Michael and so a big big one was music. We discovered early on on a road trip to Vermont, when Michael drummed or sang, or I guess it was drumming in the car, that he stopped ticking. I mean, it was like magic. And he was ticking a lot at that point. I mean, we're talking on and on. This is very early on. And so he had taken guitar lessons and drum lessons when he was younger, but he stopped them. And so we brought the drumming and guitar instructor back in. And then eventually he found a local school of rock, he ended up enrolling in classes there and its performance base. So one year to the date after he came home from school shouting obscenities, he was literally performing on stage. In a show they did different bands. And the show he was performing in was Black Sabbath, which was not exactly my favorite. But it was right. But it was really funny because while he would practice constantly, he was so passionate about it. And then of course he went on to do Led Zeppelin Tom Petty competitions they performed in New York City, and all over Connecticut and Westchester Counties. So that was really something that helped Michael manage. And of course, one of the benefits of that was also that it builds so much self esteem. And that was Michael's salvation. But for other kids, it could be sports, or it could be anything else that they're really interested in. Also, I think it's worth noting that intense focused activity, like playing music leads people who tick into what I call, sort of the no ticking zone, the soccer star and Olympian Tim Howard talks about when he's in the goal, he never ticked at all because he was always focused on saves.
Michael Leopold:
Yeah, it's It's uncanny. But like, when I am talking, I don't tick I'll never like interrupt a sentence to tick, I just, I'll just, it's like, I don't have it almost. And then I pause and I'm listening. And that's when my tics come out. But once I'm producing some some words, like my tics just disappear, oftentimes to me not only just hit it make make tics and symptoms better. There's confidence building there. And we also may find that we have a some kind of an advantage in in some of these areas they make home easier to us. I'm curious, in Michaels case with regard to music. Was there anything that stood out like that? Where were the Tourette's or something about his nature led to some kind of advantage and music? Well, it's
Michele Turk:
interesting because, as I said he had taken drum lessons he had taken guitar lessons and literally, he would just sit there and play the same chords. To Smoke on the Water over and over, never really progressing. And then all of a sudden, he has this intense interest. And we didn't realize that he was musically talented until all of this went down. He was doing soccer. He played T ball. He tried karate, because he had the karate because he had behavioral problems. So we were trying to teach him some discipline. But so you're trying everything. And when he didn't pursue the music, we thought, Well, why continue paying a drum instructor or a guitar instructor when he's not really that into it. But then, once he did really get into it, because I said through school of rock, and he was playing drums, guitar, and he also sang. That's really when we realized that he was quite talented. And in fact, I have a neighbor, former neighbor, who is a music therapist who she jumped in, and she told Michael, that he has perfect pitch. Who knew this, so things like that. But also, I did look into this. Somewhat in the book, Oliver Sacks wrote a whole book called Music Ophelia about people and musics effect on the brain. It's fascinating. I only devote a few paragraphs to it. But there is no question that there's a connection there and that music can heal. It's really, really fascinating to me. I'll
Michael Leopold:
give a shout out to another book I love it's called this is your brain on music. I can't remember the author off the top of my head. But I had that one recommended to me and read it a few years ago. Fantastic. One of the things I love about your book is the emphasis on not the deficits of TLS. But but the benefits of it. Talk to me a little about about some of the benefits of Tourette that that you've seen, or more generally in threat candidates.
Michele Turk:
Yeah, I feel like that's something an idea that was introduced to me a while back, a local organization in Connecticut called smart kids with learning disabilities, people affiliated with that, and parents used to talk a lot about the strengths. And I am still involved with them a bit, but I used to do some public relations work for them. But what I found more and more in the last few years is that the Tourette community is also talking about this. And I just find it so interesting. People are sort of in the dark about what Tourette is and isn't there's definitely still a stigma, this whole idea that not just people with Tourette's, but all sorts of neuro diverse people. Yes, there are drawbacks, but there are also strengths and like we just talked about music, but also other things. And, and I don't know if this falls into the same category, but years ago, Michael once said that having Tourette Syndrome made him a better person. And I followed up with Michael specifically on this. And I said, What did you mean about that? And he said, I think I'm more empathetic and accepting. I appreciate different perspectives. And he said, because when you're struggling, you go through something like this, where you're ostracized and even bullied as he was at one point, you're not going to do it to anybody else. And he also said that, it's it's kind of simplistic, but you're just nicer to people. And you realize that everyone has something going on that you don't know about. I don't know if that's the benefits of neurodiversity in the workplace that I've read about a non metal medical expert at all. But I do think that that is a benefit. You can be a better human being which is something
Michael Leopold:
that yeah, you can you can develop resilience and grit through it. And also that compassion, I found that as well. Being more open minded, I think can be a nice outcome of that. I want to talk a little bit about Michael's schooling years and you had mentioned the the bullying and stuff happening. I am not a parent, and I can only imagine how heartbreaking it is. When you hear your kid they're being bullied. I'm curious to hear because there may be some lessons for other parents. How did you respond to that? Did you intervene? Did you not any tips there that you, you know, that you learned or things you wish you had done differently to
Michele Turk:
intervene? And Michael was not thrilled about that. So it's it's complicated.
Michael Leopold:
really delicate. Yeah. By the
Michele Turk:
time it happened, I think he was a freshman in high school. And it's not clear that he was bullied because of his Tourette because by then it was under control. But nonetheless, that's one of the things that I didn't handle great because I really just wanted to stay on top of it. And he said that he didn't want me involved. And so he was in talks with the guidance counselor and other people involved in the school. Certainly you need to take it seriously. Research has shown that kids with Tourette Syndrome are more likely to experience bullying and also obviously a fair amount of teasing tolerance and rejection from their peers. Which is another reason why you know, finding your people is really important. It's through these activities that you enjoy. Yep. Students with any kind of disability are also more likely to be bullied. Of course, the Tourette Association did a survey. And the last one indicated that 70% of kids with Tourette said they had been bullied as a result of their condition. It goes on in the workplace, people who I know are diverse or underemployed, it is a disability. So, when you're talking about the workplace, people do need to be aware that they have protections. And but but that doesn't, that's not a quick fix, right, a quick
Michael Leopold:
fix, but definitely use the tools you have. If you're a student. That means working with the guidance department teachers, did Michael disclose to his classmates ever or to the teachers? He
Michele Turk:
absolutely disclosed to teachers. Initially, he missed three months of school because he was shouting obscenities pretty much anytime he was awake. So when he did go back to school, there was a wonderful principal who really had his back. But he was reluctant to tell students. He he wanted to come up with these cockamamie ideas. Like, can't I just say that I broke my leg? Or that I had mono? Yeah. So things like that. You didn't want to didn't want to tell them what it was. It's so
Michael Leopold:
hard. Yeah. To talk to kids when you're a kid. Like they're talking to your peers. I think the peer pressure and everything. It's tough.
Michele Turk:
Remember, this is this was a while ago, I think it's different now. I mean, these kids now are struggling with so many mental health issues, anxiety depression in teens and tweens are. It's rampant. And it's horrible. And I think that kids are more apt to talk about that now than they were a decade ago. Anything related to something that makes you different. There's definitely been a push towards more inclusivity in general, I like to think so I hope that kids are talking about it more, you know, I tried to get him to become a youth ambassador for the Tourette Association. He didn't want to do that. I tried to get him to go to different activities with the local chapter. And he didn't want to do that. He sort of came around it in his own way, and told people on his own time, which I can respect that because I don't have Tourette syndrome. I don't know what it's like. And it's been a long, long time since I was in middle school, or high school. So I had to respect all of those things. That sounds like
Michael Leopold:
he took a nice balance there and giving him that space to disclose if needed, but in ways that he felt comfortable with I was
Michele Turk:
a helicopter mom before he was diagnosed with Tourette syndrome. And I talked about this in the book and part of that it was just that we bring a lot from our birth families and my parents were real worrywarts. And I think I came into that into this parenting thing as a worrywart. And also someone who really doubted my abilities. As a mother. We didn't get a diagnosis till Michael was 11. And his school year early school years were a lot of trips to the principal's office. When he was in like first grade or kindergarten, I can't remember which but so I really, by the time he was diagnosed, I kind of felt like I was not doing a great job. As a mother, I used to say, wait to my perfect little daughter gets there to school, because then they'll realize that I am a decent mother. It was a lot. It was hard.
Michael Leopold:
We raise our kids with the things that we think are going to be important based on our own challenges, struggles, insecurities, and the things that we saw growing up. I would like to hear a little bit more about the things that when you think back on on raising Michael, the things that maybe you would have done differently, knowing what you know, now,
Michele Turk:
I felt like I had big shoes to fill. My mom was a stay at home mom, for kids. She really had a certain way about her. She passed in 2022. And the book is actually dedicated to her. So I did come into this with this idea. And there's a there's a chapter early on titled The good mother. And it's about my experiences growing up and what I thought about my job as a mother in terms of mistakes. I mean, certainly one of them early on, when Michael was misbehaving and preschool and kindergarten and so forth. Before he was diagnosed with Tourette syndrome. I always felt like I knew that something was off. And the mistake would be not trusting my gut because we were sent away over and over again. It's nothing so certainly if I had gone to a Tourette expert early on, I do think he probably would have gotten diagnosed before he came home blurting out the curse words. And again, I would say I was too hard on myself. Overall that's a mistake. Once he was diagnosed. Then I put on my my basically my journalist hat and started delving into everything reading medical Studies reaching out to the trust sociation local chapters for any information I could get I went to lectures in person I attended conferences, I was not patient at all. I was a mom in a hurry looking for a magic bullet. I remember thinking, Okay, we have to, we have to fix this problem, which was certainly something that language that I would never use. Now, I will talk about this at the Tourette Association Conference where I'm speaking as, as you are, one of the things I talk about is watch your language because your kids absorb a lot of that. And Tourette syndrome is not a problem that has to be fixed, these kids are not broken. And that's sort of how I looked at it back then. That's something upsetting to me now, and something I would do differently. Such an
Michael Leopold:
important point there around around that I have been using the term challenge instead of problem. You know, I have Tourette and it can pose challenges in my life, it also gives me a lot of the things that I'm most proud of in terms of who I am as a person. It's both it's a mixed bag, it can be our superpower. And that doesn't mean it can also contribute to some bad days and some lousy experiences. But yeah, using the right terminology, especially with children that are going to pick up on that super important for parents to be thinking about.
Michele Turk:
And these children do feel so different. It is a very distinct and unique diagnosis, right? I mean, so many kids have ADHD, kids on the spectrum. Those are things that you hear about and the kids hear about, I think more but Tourette Syndrome, they don't hear about it so much. And I don't necessarily think that it's because it's so rare. I think it's misdiagnosed and under diagnosed. But anyway, back to mistakes. One just little mistake is when when Michael was first diagnosed CBT cognitive behavioral intervention for tics was experimental. And when it was offered to us, I declined. And Michael was also getting kind of impatient with people that I had other doctors that I dragged him to. So I would say not giving that a try was probably a mistake. And then I said it was very hard on myself. This is hard to talk about. But I was I was pretty critical of my husband too. He is a doctor and OB GYN. I wanted him to spend more time helping our son helping me. And he was very focused on his job and his patience. We are still together. And I appreciate what my husband brought to the marriage more now. And I think writing gave me that perspective over the years. But also spoiler alert for anyone who reads the book. I do think he does redeem himself throughout the book. But that's something I wish I had done differently when
Michael Leopold:
there are disagreements between parents on how to raise their kid, specifically with Tourette. But it could be more broad than that. How should those be handled?
Michele Turk:
Well, not the way I handled it. Let's put it that way. I was the one taking him to the doctor's appointments. And Michael was sharing so much. I mean, there's this bond that you create that I really felt like my opinion carried a little more weight in what we did. And you were
Michael Leopold:
the one going to the doctor's appointments and confiding I know same thing I did with my mother she was the one driving us to the appointments like confided in her would tell her things that you know, my dad just we didn't talk about
Michele Turk:
right. But there are different arguments that come up. And I I'm very honest about this in the book, because I do think when there's a child who's challenged, it does put strain on the marriage. I've talked to a lot of other parents of kids with Tourette's and so forth. It puts a strain on your marriage, figure out a way to get on the same page. And for us. We weren't arguing constantly. But there were some big picture things that we didn't agree on. And then there were times where I felt like my husband wasn't doing enough because he's a medical doctor. But as he pointed out, he's an OB GYN. He studied Tourette syndrome for five minutes in medical school as the way he put it. So he wasn't exactly an expert. And he felt like our medical team was doing a lot and doing a great job. So one of the things that I did appreciate about him and I talked about this, there's a scene in the book where I would get really flabbergasted dealing with the schools and the school administrators. And at one point we realized Michael really wasn't doing much work in middle school. And they call the team meeting and all of his teachers, the guidance counselor, the school principal are all sitting there. There's an exchange with one of the teachers and my husband just stood up to her and I would have gotten so flabbergasted because this this teacher or all she seemed to care about was she had 27 kids in the class and Michael was pulling them down because he wasn't up to speed. And that's
Michael Leopold:
a lot to put on one kid, that is a big, wow. So she
Michele Turk:
wanted to sort of demote him down to the next lower class. But you know, we walked away from that meeting. And I thought, well, I may be doing all the work, I may be mad at you a lot. But I really appreciate that you were so calm, cool and collected. And you stood up to this teacher and basically said, he can do the work. We've been helping him and I've been helping him with math and science and so forth. And Michelle has been helping him with writing and reading and history, her subjects. And so people have to just sort of figure out a way to stay on the same page. And I write in the book that for us, what kept our relationship going, was that we had a little happy hour every night, and we would sit down, and the kids would be doing whatever they were doing. And my husband would come home from work. And we would have a glass of wine or a drink together. And it was like a little mini date where before all hell broke loose, or which often happened at night, because that's sometimes when Michael would have meltdowns, there was that time where we could just talk amongst ourselves and not argue. I don't know if that's something magical advice, obviously, as I said, but this is what worked for us. And we did at one point went away for a weekend for my birthday. And we went on a trip to California, it was within the first year of when he was diagnosed. And my husband's aunt and uncle God bless them, we stayed with them. And they begged us that they wanted to take care of the kids. And let us go overnight to wine country For one night. And finally, we acquiesced. And we went away for one night, and it was just like wonderful just to be the two of us. And, and that's really like a seminal part of the book, too. Because we we realized that we had so many of the same goals and dreams for our kids that you just you lose sight of that when you're in a crisis. I mean, families aren't when this happens, it throws the family into a crisis. And it's hard to sort of see the forest for the trees and to realize how much that it affects family life. And it also affects siblings, there is no question that the so called typical child is affected by having this family crisis too. Yeah,
Michael Leopold:
and making sure that those children also feel that they're appreciated and valued and getting time with the parents and things like that, I think is crucial. And I love the way that you framed all of this regarding with your partner and making this as like a happy hour. This is a social like this is for us to build a relationship. It's a date, it's adults should never stop dating, even after marriage, like just keep building that relationship. You guys are a team. And I think remembering that reinforcing that team then just makes the two of you stronger and more prepared for whatever is gonna come next. Yeah,
Michele Turk:
yes, I agree. And especially about supporting the siblings to like you said make making sure that there's just time and listening and figuring out what it is they need. Because their lives my daughter was two years younger, their lives don't stop, she still had to go to Girl Scout meetings and soccer practice and still wanted time with us.
Michael Leopold:
There's cases where sometimes the child that doesn't have the diagnosis can feel neglected, or like they're getting less attention and less time, each person where they're at and with what they need. And given the bandwidth of time you and your husband have a lot of people like talk to that, especially if they're in rural communities, they're not in New Jersey and where they just go to an entry, CGS thing or that maybe the TA has a smaller presence in their area. A lot of parents have newly diagnosed patients will go on social media, they'll look at Facebook groups to find information about this. And it's been a good way for people to get some initial answers and at least find that by the community of people going through similar challenges. I'm curious to hear about your experience with that with the social with like specifically the Facebook pages around Tourette. Was that helpful for you? Was it not?
Michele Turk:
This was back in 2011 and 12. But I remember going into some forums and they weren't fit on Facebook, but they were other forums and I felt like there was initially I did look into some complementary alternative medicine routes. And I found like some of those, some of them had interesting information about things like diet and so forth. But some of them just sort of stoked my fears about things like we had done a renovation was there something in the insulation that did something, what I do now is try to if I have any thing helpful to say I will post in there. It is a great way need to have an online community. Also the Tourette Association has different Facebook groups for different areas of the country. So I'm in the Connecticut one. You do have to be careful because Tourette Syndrome manifests itself differently in everybody. There are the tics, which are what everybody sees. But then there are so many co occurring conditions like OCD and ADHD and learning disabilities and anxiety. And so what works for one person doesn't necessarily work for the next person with Tourette Syndrome. Take it with a grain of salt if someone gives advice in a Facebook group about a particular medicine or something that did or didn't work for their child, because it's not necessarily going to work for yours. That said, I've been following a lot of different Tourette experts and the New Jersey Center for Tourette syndrome and so forth and the Tourette Association. And there are so many free webinars that local chapters hosts will there's of course, the trade associations upcoming conference tick con 24 When I went to the Trade Association Conference in 2012, and I attended the newly diagnosed seminar with Dr. John walkup that was made available online afterwards. And he is doing that again this year. And it is incredible. It was so helpful. But there's a whole chapter in the book on this because and I call it meeting Mr. Right, because I felt like everything was so valuable to me. And it was really chock full of information. Take advantage of that if there are webinars, whether it's just learning about some of the medical aspects, or there's a lot of webinars on how to handle 504 plans and IEPs and things like that those can be very helpful. And I did consult Tourette Association, Education Advocates early on who gave me free advice about all that. Yeah,
Michael Leopold:
the NJC TS New Jersey Center for Tourette's syndrome also has a lot of free programming like you had mentioned, there is a virtual support group for parents. It's led by Jeremy Lichtman, who I've had on the podcast, but he leads that group with parents. That's one of many free resources you could find around VCTs and and other groups so you get some support. Also, if anyone is looking for therapists, this could be doctors, psychologists, counselors for seabin medicinal therapy alternative approaches GCS is a great resource for that as well. We can make send you are referred providers and connect you with someone in your area. And that's been a resource for a lot of people as well, including for some of the stuff you mentioned, like parenting and we could recommend marriage therapist, couples counseling Tourette, like you said it affects the family, we put a lot of focus on the patient with it, but there's also support for those around them, and GCTs and other groups can connect you to those for those interested,
Michele Turk:
they've been a great resource for me too. I've definitely used the NJ TCS group as well. And one thing I'm trying to do on my own Instagram is just because I like blending my family story with facts. We've been doing something called Friday fax where we do just like little graphics about one little aspect of Tourette syndrome to educate people. So that's Michelle Turk author on Instagram. Like most parents, when your child is first diagnosed, you're just like a sponge, just trying to absorb everything that you can learn about it because it is overwhelming. But all of these are wonderful resources for for parenting. This is a great resource for parents, thank
Michael Leopold:
you. And my I think kind of closing remark to parents would be to be forgiving of yourself and know that you're going to make mistakes. And that's just part of it. You want to be proactive and researching and finding these things. You also have to be your own person as a paragon of running the family. And there's a lot that goes into that you've may have a job to or you have other thing, you know, be kind be understanding and forgiving of others and of ourself. Because any kind of challenge like this takes a lot from a lot of us. No one's gonna do it perfectly. Wonderful. Well, it's been great having you on the podcast here and I'm looking forward to connecting with you more but TIG con later this month in Dallas, would you share for our audience the title of your presentation at the conference?
Michele Turk:
Sure the title of the presentation is if I knew then what I know now 20 lessons from parenting a child with Tourette syndrome. And we've gone over some of those lessons today. And the book is called What makes him tick A Memoir of parenting a child with Tourette Syndrome. It's available, wherever books are sold. It'll be out on June 4. And I met Michelle turk.com with one L. One hour Michelle. Wonderful.
Michael Leopold:
Glad to hear it. Thank you all for listening. Michelle. It's been great having you on the podcast and to all of our listeners hope you have a wonderful They Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and Associated Disorders empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and associated disorders and JC TEs, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment