Mother Shares Her Journey Raising a Daughter with Tourette SyndromeUpdated: Dec 1
Amy, a mother of a teenage with Tourette Syndrome, discusses what it is like raising a child with this disorder. Amy describes the symptoms of Tourette Syndrome, her daughters’ symptoms and how they progressed and shifts over time.
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Hello everyone and welcome I am Jamie Lord Tovar, and today I have with me Amy, how are you today, Amy?
Glad to hear it. I’m good. Thanks. So Amy, today we are going to talk about Tourette Syndrome. So can you tell me what your connection is to Tourette Syndrome?
Sure, um, my daughter Avery, who is currently 17 and a senior in high school was diagnosed almost three years ago. It’ll be three years in, in about a month. And right after our diagnosis, and we kind of expected we expected the diagnosis. She went to Dr. Google. And she told me she thought she had Tourette syndrome. And then when she started high school her freshman year, she moved from a very small Montessori School with 16/8 graders to a 500 student freshman class at a public high school. And she was doing fine adjusting, but her brother left to go to the Navy. The day he left. She came home with a violent head tic that had given her headache and it was, you know, a constant throwing back to the head for hours by the time she had gotten home. And so that really prompted the phone call to her pediatrician. And in my message I just said I feel really strongly we’re going to get a Tourette Syndrome diagnosis and would like to be referred to a neurologist but I understand if we have to see you first. And she knew Avery she knew me. She trusted us and we were inside of a neurologist office within a week, which was amazing. Wow. So and then by the weekend, the Northern California Hawaii Tourette Association chapter group was meeting in person at a pizza parlor. So we popped in there. And kind of the rest is history. We got very involved with the Tourette Association of America. And I became trained to do educational presentations for schools and educators. And I ended up joining their board because I don’t know how to do anything but be 100%. So and then eventually Avery became a trained youth ambassador for the Tourette Association of America as well.
Oh wow. I can’t wait to talk with her about all about that. That sounds really exciting. So she had before the head tick backwards there. There had not been any other signs prior to her
There had been even as young as five I remember her having, you know, no scrunches. There was a sniffing kind of a Almost a nose clearing sound that she would make. We actually when we got her tonsils out, we had them remove her adenoids because of that sound that she was making. And it turns out that was a vocal tic. So vocal tics are anything that makes noise kind of with your face is the best way to describe it. It’s not necessarily an utterance of a word, which I did not know. Plus, she had the nose scrunching, she had some eyebrow lifting. She had kind of she would stretch her upper lip. And it happens whenever she was excited or stressed out. And you know, we would kind of joke like, oh, look, paper is really excited or faces kind of going a mile a minute. And as she got a little older, you know, she was seen at UC Davis, which is a wonderful teaching college here in Sacramento. She was seen at the MIND Institute for ADHD. And we talked a little bit about the facial tics, and they said, Oh, yeah, that’s a transient tic disorder. And I went, Okay. And it didn’t really escalate, except when she was excited or stressed out, and then it would go away. And then when puberty hit, we started seeing some more tics. And she started to be more bothered by them. And she would just tell people, oh, it’s a tic, I just, I can’t help it. And that was the end of it. And then with some, you know, girl drama, things started to escalate. And that’s when she consulted Dr. Google. And that was in the spring before her door diagnosis. And I said, Well, you know, do you want medication? Do you think you need medication to control it? And she said, No. I said, Okay, we’ll mention it the next time we see your doctor. And we hadn’t seen her pediatrician until things had escalated to that. That really violent head tick. Yeah.
Oh, yeah. I think that would be because so. So Tourette’s Syndrome can be it can be a physical vocal. So it’s all just its tics. Is that right? Can Can you kind of explain to us what exactly what Tourette’s Syndrome is?
Sure. So it’s a neurological condition. Sometimes it’s confused for a psychiatric or psychological issue. And it does kind of commingle with some of that stuff. So there’s, there’s Tourette syndrome. And the there’s this really amazing graphic that the Tourette’s Association of America put out. It’s a picture of an iceberg. And it shows Tourette syndrome and vocal and motor tics on the top. And then below is ADHD, executive functioning, autism. OCD, odd sensory processing issues, depression, anxiety, rage, there’s a lot of things that can come with it. And some people call them comorbidity or CO occurring conditions. So you might see the tics, but inside there’s a lot more happening. In her case, she’s got ADHD. She’s got some sensory issues. She has depression and anxiety. She has OCD. And in the past year and a half, we’ve seen a lot of rage, which it’s interesting because her Tourette’s was so mild for so many years. It we we were very fortunate in that we were able to see that her Tourette’s is not her, you know what I mean? A lot of kids are very Tikki from a very young age, especially the ones seeking help from the Tourette Association. I mean, we don’t go you don’t go to a support group. If you don’t really if you’re like, ah, you know, they just blink. Right. And then there’s also coprolalia and Ko paragraph Yeah, and dysgraphia copro. copro is Greek for PCs. So it’s basically poop mouth and poo pants. So it’s it’s inappropriate gestures and which is actually like your typical Tourette Syndrome. We’ve had people think of the swearing but only 10 to 15% have the swearing. Unfortunately, my daughter’s one of the 10 to 15%. She also has echolalia. So if something piques her Tourette’s in a certain way to her ear, she can get kind of fixated on repetition of the word. Okay. Yeah, it’s it’s an incredibly complex disorder, especially for the ones that have more severe Symptoms, which is definitely her, you know, some of her doctors are more than three hours away. Oh, wow. Yeah. Yeah, we go down to Palo Alto to UCSF occasionally because we don’t have specialists that are really great at the more severe Tourette Syndrome. Yeah, yeah. Her’s this definitely more in the life altering realm, I guess.
Yeah. Okay. So can you kind of just describe what a typical day is like, living with Adrian, and her Tourette Syndrome?
Sure. And it’s it’s changed a lot and it changes. Over time, it kind of shifts. Typically. You know, she’s 17. And she used to be really independent, got herself up, got herself ready. But now with the TMS we really, so my husband or I work from home every day. She’s not home alone. Because she has had some tics that are pretty alarming. She, she had a fainting tic at one point where she would just kind of almost pass out, she had only happened a few times, but we just never know it’ll return. She’s had paralysis ticks, which we kind of described as her just going boneless. You know, so she can hit her head. She’s had some obsessive tics where she bumps her head, and she has to hit it so many number of times or until it feels right. So either myself or my husband works from home every day. So whoever’s at home wakes her. She goes to kind of an alternative high school. We pulled her out pretty much immediately after her diagnosis. So there’s only maybe 90 students in the whole school. It’s more project based learning. She has an advisor who she is very connected to who gets her. Yeah, he when he sees her in the hallway, he’ll say, Hey, you haven’t called me in mother effer in a while.
Now, I’m sorry. And he’s like, and then another student will say, Well, can I call you back? One of the benefits is the right,
right? No, so many, and her community is so amazing. So most days, she does not go to school, she works from home. I just depends on how she’s feeling how Tikki she is. She also drives which we weren’t sure if she would be able to drive but in her particular case, she focuses a lot on the driving and when typically those with Tourette’s that are when they’re really engaged in something that gives them a lot of joy. Sometimes it’s being athletic, sometimes it’s performing. doing music, like Billy Eilish has Tourette Syndrome. Oh, yeah. And she, she doesn’t take when she sings or performs because she’s very focused and engaged and, you know, martial arts and things like that. So driving, a lot of people with Tourette’s find that they’re okay to drive. And if they are feeling ticky, they can pull over. Actually, there was a really great show called Raising Tourette’s. And I want to say it was like a six or eight episode series that followed some parents with kids with Tourette and it’s one of the girls who was actually getting her permit and her license. So it was one of those things that was like, Oh, good, you know, gave us a little hope that that she would be able to drive and she does. So when she goes to drive, she just checks into make sure she’s okay to drive and, and then she stays as long as she can, knowing that she has a 10 to 15 minute drive home kind of shifts her day around how she’s feeling. Yeah.
So she’s able to, to pretty much stay focused for that 15 minutes because I was thinking, you know, driving is really stressful. I would think that that would be something that would trigger you but
right um, she does get really mad at other drivers, but I don’t think that’s treads I think that’s the California around people that drive horribly. But yeah, she um, she actually she does better as a driver than a passenger. As a passenger her back her back in her feet seem to be the most impacted right now. So she has a hard time sitting upright for long periods. And she has a hard time like walking long distances. Because her feet get really tricky and then she gets kind of stomped be so you Usually we put ourselves in a position to, you know, be in a position where we can get her out of wherever we are safely. My husband’s pretty big and strong so he can carry her. I’ve given her some piggyback rides, in and out of doctors offices and such. So, but you know, she’s 17, she doesn’t want to look like she needs her mommy to carry her around. And she’s bigger than me. She’s taller than me. So yeah, so that’s pretty much a typical school day. So she goes, she’s gearing up to go tomorrow morning. Because they have something called advisory. It’s kind of like homeroom where they all get together as a group and collaborate. And she was asked to do a specific project. So her advisor said, Hey, you haven’t done this yet? Is it possible you’ll be able to do it Friday morning? Is that a better time for you? So she’s kind of geared up for that.
Oh, nice. Okay.
So she does better when she can kind of plan ahead. Like, I know, I need x number, you know, this weekend, she wants to go to a an escape room with her friends. And we also want to go see a movie. And she said, Well, I think I don’t want to do them on the same day. Because I think it’ll be too stressful, because one of the things she’s really great at is suppressing. Most people don’t suppress as well as she does, she can hold her tics in for a period of time. But what happens is they build up, and then they kind of explode later. And sometimes it’s much worse, they they have to come out, they just do. It’s like a rotten tooth, it has to come out, it can either come out quickly and easily at the dentist, or we can wait for it to rot and fall out of your head. And so suppression is kind of waiting for it to rot and fall out of your head. Hmm.
I’ve heard it was it’s kind of painful for the person to suppress.
It is it’s like um. When we do the educational trainings, we do it a couple different ways. One, we might do a staring contest, if it’s young children, and and then you have to keep reminding them through the whole time. Don’t blink, don’t blink, Don’t blink. So all they can focus on is not blinking. And then you still have to blink. with adults, we asked them to write down the Pledge of Allegiance. But every time you clap your hands, you have to stop writing and you have to tap your pinky on the table. And then to help simulate kind of the OCD and dysgraphia we let them know that every third word has to be crossed out and rewritten. So while you’re writing the Pledge of Allegiance, I’m clapping pretty consistently. And then you’re having to count your words and cross them out. And then right before I say start, I say okay, you have 90 seconds neatness counts go. Oh, and then it’s near the end, especially if it’s a roomful of educators, I like to say now, don’t forget, I didn’t write it on the board. So you’ll have to remember, for math tonight, we want you to do page 46. All the evens to page 52. All the odds, but skip number 28 and 29. Yeah, and at the end, there’s not a single person that can finish the Pledge of Allegiance. So it’s trying to simulate how much students are holding in and how hard it is just to get through a quiet hour in a classroom where you’re trying not to disrupt other people. You know, they’re not trying. She’s not trying to disrupt other people. But she has a right to an education like anyone else. Yeah. Yeah.
Wow. That sounds very challenging. Very so. So what would you say is probably the biggest challenge with with raising Avery because with her Tourette’s?
I guess, personally, for me, my challenge has been I’m a big planner, I’m a very busy person. And having a child with a neurological condition means I can’t plan. I mean, I can, but I have to be able to kind of fly by the seat of my pants in a moment’s notice. We went on a very large trip with her Girl Scouts this year. And we made sure that they that she had a private space to decompress when needed. We let her know all the chaperones agreed that if she couldn’t or didn’t feel comfortable participating, even if it meant that she had to say Stay home, while the rest of the group went and did something one of us would volunteer to stay with her. We were really understanding with her medications and, and it’s, it’s, you know, we’ve I’ve got to be able to be flexible. And I’m not I was not a flexible person prior to this. I, in my day job, I run to Child Development Centers, and I’m an infant toddler specialist. So I train other teachers. Oh, wow. So I’m pretty busy. And my life is very planned out. You know, I know I want to do this. I know we want to do this trip by now we want to go here. But now, at any given point, we could be in the middle of a movie, and she could turn to me and say, We got to go. And I’m like, Okay, we’re done. And, you know, we love going to Disneyland. So we have to plan and I have to be okay with not going 1000 miles an hour to get every penny’s worth out of those ridiculous prices need to get right. I have to be okay, that we might go for three hours. And that’s it. Despite Park accommodations, they’re very accommodating. But, but yeah, I mean, sometimes three hours is our limit, or we have to take days off in between and pay for another hotel night. So I’ve just had to be really flexible, which, honestly, you know, we we try and find the blessings in the things that we can’t control. I call it finding the blessings in the bullshit. But there’s, you know, we got to find the gifts in what we’ve been given. And one of the bigger gifts has been, I have been forced to be more flexible. And it’s better for our whole family. I’ve been forced to take a backseat to her advocacy, because she she’s 17. She wants to live on her own someday she wants to go to college. And she’s not going to be able to do those things. If I’m by her side speaking for her. You know, there’s times that it’s appropriate. If, you know, if we were in a movie theater or a restaurant and somebody confronted her, my husband and I, we have a plan. My husband takes her and I go okay, so I’m willing to die on this mountain, are you? I have ADA backing me. So. So you know, there are times in which I’ll do the advocating, but for the most part, I really tried to take a seat and step back, so that she can practice those skills. She needs them. And that’s good for all of us.
Yeah, that seems really hard. That would be as a parent, I know. It’s gonna be like, that’s your biggest challenge.
Right? Right. It is, you know that my instinct. I’m like, yeah.
Well, it sounds like that she’s had, you know, a lot of success, despite her challenges, so what at this point? What what do you feel like is Avery’s the biggest success?
I think finding a school community that she’s comfortable with. And every time she advocates for herself or others with Tourette Syndrome, she gains more confidence. Every whenever she’s talking about it, whenever she’s very vocal and very involved. She feels better about where she’s at. So that’s been a huge success. She’s an artist, so she spends a lot of time doing art. Yeah. And we’ve also found, we have a really great team. She’s got a few different therapists, and a psychiatrist and a couple neurologists. And they’re all amazing. They’ve all been very understanding we have found for her, that the only thing so there’s ticks and then there’s tick attacks, and tic attacks are kind of like an explosion all at once. In her, they typically affect her back and legs the most. So she has to be sitting or laying down. And they’re exhausting. So she sleeps a lot when she’s more Tikki. And we have found that instead of taking her to the ER for a shot to knock her out. The only other thing that works is medical marijuana, which has, I’m sure tons of controversy and I just don’t care anymore. Because for the past two years, that’s how we’ve controlled a lot of her tics. She can can use it in such a way that she can still be fairly lucid. She wouldn’t drive in those instance. But she can still do math tests online, she can still collaborate and do her art. Yeah. So, so she, she controls it in such a way that she can get things done while being medicated. But it also means it limits where we can go, you know, we have to be able to take her medicine with her. And regardless of whether it’s medical or not, and we have, we have all the blessings of the State of California to use it, but we can’t fly with it. She can’t use it in public spaces, things like that. She can’t use it on school campus. So you know, there’s some downsides that come with it. But there there isn’t a medication that does what that does, really isn’t. There are no medications, specifically marketed for Tourette Syndrome. Usually it’s ADHD meds, like guanfacine. Things like Tramadol, things like SSRIs. And anti psychotics tend to help with tics, but they don’t always and they can come with some obviously, unpleasant side effects. So we ran the gamut through several medications and several combinations, before we even considered medical marijuana. And, you know, it’s really hard to think, at the time she was 15, like, I’m going to teach my daughter how to get high. Like, it doesn’t mean that’ll look great on paper. Right? Right. But, um, but I’ve dealt with some pain issues around autoimmune issues and myself. So I also know that it can have very helpful effects for long term problems. And, you know, the, the anecdotal evidence is clear that it can help a lot of people in a lot of ways. So that’s been another area that this kisi that we’re starting to get into a little bit as well.
Oh, interesting. Interesting. Now, so in addition to, to medication, can you do like stress relieving, like, yeah, patient and yoga and things like that. Those things also help,
meditations really great. Um, and I, I have some experience with mindfulness and meditation, and even just meditating everyday for five minutes can re-wire your brain. So that’s been helpful. We also did a long series of hypnosis. With an hypnotherapist, a pediatric hypnotherapist in the Bay Area, actually specializes in Tourette’s Syndrome. And so some of his techniques have been really helpful. There’s see bits, CBI T which is different from CBT therapy, c bit kind of teaches you a competing response. So if you have the TIC to throw your arm out, instead, you might bring your arm in and pat your leg every time you get the urge. But it also focuses on teaching you when the sensation of the need to tick is coming on. Her tics seem to kind of bounce around a lot and she has a lot of vocal like right now. She’s mewing mewing a lot. And we just completely ignored it’s like we don’t even hear it also, because I’m around her a lot. Her tics have a different voice than she does. And we’ve actually renamed her Tourette’s Jared. And Jared is a misogynistic 15 year old boy. mouth and a wicked sense of humor. He objectifies women. So some of her tics are Yeah. Pretty, pretty rude to women. discussion about boobs in our house. And then on top of it, Avery identifies as a lesbian. So between her and my son and my husband, I’m Wow, you must feel oh my gosh, Mike is not a good looking man and you know, whatever. And then Jared pipes in with something about boobies and I’m so for the most part, we ignore her tics completely, but occasionally we get some hilarious outbursts. She’ll hear something and it’s almost like the subconscious hears it. She was up late one night, couldn’t sleep and saw a clip from some comedy movie. And that same clip came out the next day in the psychiatrist waiting room, and it was like it Two minute dialogue monologue. Okay. And it was hilarious. And I’m looking at her because I didn’t recognize the reference. And she’s just kind of doing her thing. It had to hand gestures and everything. And then at the end, the receptionist flings open the the window from her little medical office and goes, oh my god, I love that movie. And I’m like, Avery’s going, I don’t know. And I’m 22 Jump Street. And she had the whole it was the slam poetry thing. Fair enough, seen it but I have actual advice. So when when Kyla Hills up there and he’s like, runaway bride, I mean, she’s doing it like, same comedic timing, same tonal quality. It was. That’s funny. She didn’t know what it was from because she just and she goes, Oh, I think I saw it on YouTube last night. And it was funny. So I watched it a second time while Jared memorized it. Like to perfection. Yeah. So it’s really, from a brain research standpoint, the whole thing is kind of fascinating. Yes. I mean, if it wasn’t so life affecting it would be a lot cooler. But it’s very interesting because they just don’t know exactly how people end up with Tourette Syndrome. They know it’s genetic, but, but it’s Polly genic. They can’t quite pinpoint which exact teens are doing it. But basically the basal ganglia is supposed to stop all of these strange urges that apparently we all have to say or do movements. And someone with Tourette’s Syndrome, their basal ganglia just kind of lets things through here and there.
So do you have other people in your family then that also have been diagnosed or is she
I don’t know anyone with a Tourette diagnosis, but I have a cousin that has a kind of a no scrunch that she’s always done. Her sister is diagnosed with OCD. I see some mild OCD, OCD traits in myself. I definitely have ADHD. My son has ADHD. So yeah, there’s definitely some family history of that below the the iceberg stuff. depression and anxiety. There’s a lot of that on my on both my mom and my dad’s side. So yeah, it’s, but we don’t know anyone with full blown Tourette. Okay, yeah.
So she gets to be the first one. Yeah. The Pioneer.
So, so, what do you think the future looks like for you and your family, and,
you know, um, I’m going to refer back to my previous statement on being flexible, and that’s where we’re at. Um, you know, my husband and I have talked to him, and we don’t really talk with her too much about it. But, um, we’re prepared for whatever the future holds for her, we want her to be as independent as she’s capable of being while still keeping her body safe, there’s a chance her tics will diminish. But oftentimes, those below the iceberg things become more pronounced. So it could mean that OCD will take more of a precedence or more depression or more anxiety, we just don’t know. So we’re just kind of prepared for whatever. She’s she’s very artistic and very driven in that regard. She she wants to have a tiny home and way too many animals. So we’re hoping that that’s a reality for her. And if not, we’ll we’ll figure out our situation so that she can be as independent as as she wants to be within the parameters.
Okay, that that sounds good. Sounds like you are very open to the possibilities. But yeah, yeah, yeah.
Yeah, the one thing we’ve been told is to not, not focus on it going away in the future that some adults with Tourette Syndrome have said that they were told that by their doctor that it would go away in adulthood. And when it didn’t two became a really big point of depression, right? Like, why is everyone else better and I’m not right. So we’ve we found within the tourette community, that it’s really important to talk to other parents and find out and talk to adults with Ts to see what what possibilities. I mean, there’s there’s so many possibilities out there there. I mean, Billy Eilish is doing great. There’s a teacher. He’s actually now an administrator in Georgia public schools. And he was the feature of a movie called the front of the class. And he was a teacher trying to get a job in Georgia’s public schools out in Atlanta. And he finally found a school that got him and was willing to accept him as a teacher. And he’s moved his way up, and now he’s an administration at the district level. And I think Brad Cohen is his name. And he’s amazing. So there’s more, there’s more awareness every year about Tourette’s.
That’s great. That is really great. Nice. And, you know, with with art, you can, you know, there’s plenty of artists that have all sorts of issues. And one of those things, if you want to promote yourself, you know, then then you can really have a career, you know, so yeah, yes, that’s great. I can’t wait to talk to Avery about some of her art.
Oh,my gosh. Well, I mean, I, of course, think everything she does is
not biased at all. No, not at all. Not at all. So is there anything that you’d like the community to know about, you know, Tourette’s or, you know, ways that they could be more supportive of you and your family?
Yeah, I would say, um, you know, don’t assume that you know, what’s going on with anyone really, um, prior to Tourette Syndrome, I’ve always tried to be very understanding and, and not assuming that the eight year old having a tantrum is just a brat. I mean, they’re dysregulated, right. So when my 17 year old needs to be carried out or makes noises, even when they look intentional, I’ve been in a situation where it looks like her tics are intentional. And, and other kids with TS when they get together. It ramps way up because they’re kind of catching like a yawn would be okay, we all start yawning pretty soon everybody’s yawning and then someone’s gonna be out. And so you get to Tourette camp, which is a thing. There are a few different Tourette camps throughout the US. And afterwards, they’ve picked up new tics. Oh, no. Yes, yes.
Your friends bet their friends habits to
Right and sometimes they they drift off. But we all went to a pizza place and there was this chant. That was somebody’s tick, that became everyone else’s tick. And it was this whole dialogue. And it was very, very graphic. And so a group of like six teenagers, we’re all saying it together. So it’s it sounded very intentional. So I guess my my advice or ask the community is don’t assume that you know what’s going on and maybe respond with kindness first.
Like that advice? Yeah.
Right. It works for almost everything. Right. Right. Yes. On with Zoom. People are not trying to make your day worse. And it’s probably not about them. Right.
Right. But yes, I agree. I like that advice wholeheartedly. Yes. All right. Well, I think we’ve covered all of the questions that I had for you. Is there anything else that you’d like to add?
I think that’s it. Yeah. I, I mean, the Tourette Association of America has been a giant saving grace. I could not recommend the resources enough. They’ve been amazing. Yeah. And that’s, that’s why I volunteer for them. Because it really helped us navigate and it helped us feel like we weren’t alone. It can be very lonely with a child with any sort of special need or different ability. And it really helps to find our people.
That’s great. That’s so great. Yeah, I mean, we all need support. It’s so glad that you were able to find such a great resource and that you’re able to give back to it as well. That’s really nice. All right
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