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Raising Tourette's - General Discussion


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Happy to see this forum, thank you. I have watched the first two episodes so far. Tourette's is something I know nothing about so it's interesting to me. I find myself gravitating toward Kristin the most, I think in part because my older DS is starting senior year of high school and even though this was filmed last year, we are following her senior year. I wonder what she's doing now. I found her mom on Facebook and it appears Kristin has a page but it looks like it's pretty private (as it should be, IMO) so I can't see if she's at college this year. She's cute (very pixie-like with that short cut), sounds like she has a good head on her shoulders.

I can't decide what I think about some of the other families. The mom of the 11 year old cello player (sorry, most of the other names are escaping me right now) kind of rubs me the wrong way, she seemed so abrasive about the orchestra she wants him to be in. But maybe because she also has Tourette's, she's less likely to baby him than, say Kristin's mom who seems very nervous about being close by all the time. The boy who asked his friend to the dance (Colton?) seems very sweet. 

Can't wait to read what you all have to say too!

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I'm caught up to the current episode (the 3rd) and I don't want to sound crass, but this show exhausts me.   I start to feel so much tension watching these kids tic and cough and jerk their necks and everything.   I can only imagine what a toll it takes on them. 

From the first episode:  I agree about the cello playing boy with the overbearing mother pushing him to practice all the time. In my view the kid was clearly being browbeaten into playing the instrument and was only doing it to please Mom.  Hopefully, she will chill out or he will push back as the show goes along.

9 hours ago, Eureka said:

rubs me the wrong way, she seemed so abrasive about the orchestra she wants him to be in. But maybe because she also has Tourette's,

I must have missed the revelation that cello mom has Tourette's too.  I don't remember seeing her have any kinds of tics - gotta pay attention when they show up next episode.

 

I don't have kids but I feel that some of the moms are doing more harm than good with micromanaging and hovering.  I haven't got all of the names yet, but the mother (Stress Mom) with the girl whose legs give out and who is constantly getting called to school needs to chill.  Sitting there with a phone anticipating that it may ring any second with a crisis is no way to go through life and your other child will probably start to think that they're an afterthought.  One thing bugged me though - the scenes with SM tutoring Homeschool daughter (HSD) and the conversation they had about HSD feeling neglected felt so scripted and not spontaneous.  It felt like they wanted to up the family drama, so SM and HSD had to have a heartfelt (but stiff sounding) convo.  The scenes with Snake Grandpa seemed crammed in too - filler to show how sweet it is that they can bond over their disabilities.  I was not moved.  I like the HS girl with  the pixie cut.  The other two teen boys... still forming an opinion.

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Stress Mom needs to get to therapy ASAP and learn some coping skills or she’s going to breakdown. You can’t give from an empty cup. I found it interesting that when listing off things she had to be on call for for her oldest daughter, bringing her things she forgot was on the list. So it’s not all Tourette’s issues; she’s just forgetting things. Which is normal and I can’t remember if she adhd/add, but that can add to the forgetting things, as well. BUT you can’t go rescuing her even damn day because she forgot something. It’s like Rachel’s mom from Born This Way, when she said she had to address Rachel’s behavior as a child or it’d get out of control as she grew up and having a disability isn’t an excuse. I realize there are many, many factors going on with Charlee (and she seems like she has a severe, complex degree of Tourette’s), but Stress Mom needs to separate the Tourette’s issues from normal adolescence from adhd/add/whatever and address each appropriately. I can appreciate that she is very stressed out. But re:therapy to learn better coping techniques for herself  and if Charlee has other Bx or MH diagnoses and hopefully is seeing a psychologist or psychiatrist, SM can learn ways to address those. If a child with DS (or other dx) had a behavioral issue, you’d still try your best within the limits of the dx to address the issue (re:Elena). SM had me a ball of tension and anxiety just from her clips. 

 

ETa: I don’t want to sound heartless, I sincerely feel for SM and I’m only going off what we’ve been shown, but SM needs some real help...aside from her husband and father telling her what she’s doing wrong).

Edited by dreadfulLeigh
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I worry about Charlee's little sister. Stress Mom (good name!) says that her anxiety and possible OCD are too severe for her to go to school, but I can't believe it's helping her to be constantly exposed to that much stress and not even get through a lesson without having to go deal with Charlee. I get that being a sibling of a kid with a chronic illness has a lot of challenges, but from what we've seen, little sister is totally getting the short end of the stick. 

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4 hours ago, dreadfulLeigh said:

Stress Mom needs to get to therapy ASAP and learn some coping skills or she’s going to breakdown. You can’t give from an empty cup. I found it interesting that when listing off things she had to be on call for for her oldest daughter, bringing her things she forgot was on the list. So it’s not all Tourette’s issues; she’s just forgetting things. Which is normal and I can’t remember if she adhd/add, but that can add to the forgetting things, as well. BUT you can’t go rescuing her even damn day because she forgot something. It’s like Rachel’s mom from Born This Way, when she said she had to address Rachel’s behavior as a child or it’d get out of control as she grew up and having a disability isn’t an excuse. I realize there are many, many factors going on with Charlee (and she seems like she has a severe, complex degree of Tourette’s), but Stress Mom needs to separate the Tourette’s issues from normal adolescence from adhd/add/whatever and address each appropriately. I can appreciate that she is very stressed out. But re:therapy to learn better coping techniques for herself  and if Charlee has other Bx or MH diagnoses and hopefully is seeing a psychologist or psychiatrist, SM can learn ways to address those. If a child with DS (or other dx) had a behavioral issue, you’d still try your best within the limits of the dx to address the issue (re:Elena). SM had me a ball of tension and anxiety just from her clips. 

 

ETa: I don’t want to sound heartless, I sincerely feel for SM and I’m only going off what we’ve been shown, but SM needs some real help...aside from her husband and father telling her what she’s doing wrong).

 

So Charlee has an amended day at school, which means she must have an IEP or 504,right? Wouldn’t she qualify for an aide who could head off some of the reasons she calls Mom so much? I don’t mean the forgetting things but the actual issues related to her issues.

Edited by Eureka
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1. my shift key is broken so the only way i can capitalize is by turning caps lock and off, and that is a huge pita. please bear with me.

2. i tried to revise my previous post since i accidentally hit enter too early and my post makes me look like a total arse. but the revision wouldn't save. 

3. i can't take stress mom for long i totally agree with dreadfulleigh. 

4. i love love love kristen she seems like she tries so hard and has a great attitude. i hope college is going well for her.

5. the red headed teen, can't remember his name yet. i like that he tries to pass off his issues as not that big of a deal and it may seem like it to him, but, the therapist had a point that it is severe, in it's own way. i guess a sniffling tic is not as bad as a throwing or cursing tic, but, it's still stressful and when you try to hold it in you can make it worse. share your burden with your parents, that's what they are there for and they can't help you if they don't know. 

i rarely watch live tv, preferring to dvr so i can go through commercials and binge watch all my dvr'd shows on the weekend. but, this show makes me want to watch live. 

 

the young man with the army wife as a mother, who also has tourette's, may dislike playing cello so much, but, i can kind of see mom's point. the playing reduces his tics while he's playing. the focus he learns here may help him in other areas. i wonder of the percussion playing in band helps kristen, as well. she seems to love marching band. i wonder if she got into the band in college, too.

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Watching Sam, the red haired teenage boy, and his ability to discuss his Tourettes, I think he would be a terrific motivational speaker.  He could explain what Tourettes is to other high school students, and also mentor younger children with tourettes.  I know he makes light of his tics, and tries very hard to hold them in, and I know he doesn't want attention at school for having a disability, because in his mind it is only an inconvenience, but now he is on national TV.  Now is the time for him to use his feelings about what is going on with him, and his abilities, which seem strong, to help others to understand, and accept people with this disability.

Many years ago when I was teaching in an elementary school computer lab, I had a student with Tourettes.  He was a nice little guy, and very bright, but one of his tics was licking his lips, and they were always chapped and sore looking.  When I got him as a student, I did a lot of reading about this syndrome, and so much that I learned is being remembered and reinforced by this series.

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@Grammy6 how wonderful that you took the time to learn about your student's condition. i know most educators care about their students and want the best for them, but, i can't see them all taking the time to read up on the condition. you are a blessing to your students. thank you for all you do.  

i agree sam would make a great speaker. he really seems to think logically about his tourettes and how it affects him. 

'

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On 9/1/2018 at 2:22 PM, Eureka said:

So Charlee has an amended day at school, which means she must have an IEP or 504,right? Wouldn’t she qualify for an aide who could head off some of the reasons she calls Mom so much? I don’t mean the forgetting things but the actual issues related to her issues.

I would certainly think so, especially if they denied her previously for being an unacceptable risk for the school. To let her back in, some kind of IEP or 504 would seem prudent. Especially since she seems to have several additional dx to Tourette’s. Something must qualify her for the IEP/504?? I forget what state she’s in? 

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23 minutes ago, dreadfulLeigh said:

I would certainly think so, especially if they denied her previously for being an unacceptable risk for the school. To let her back in, some kind of IEP or 504 would seem prudent. Especially since she seems to have several additional dx to Tourette’s. Something must qualify her for the IEP/504?? I forget what state she’s in? 

 

20 minutes ago, Mom2twoNonna2one said:

isn't she in chatanooga, tn

I think Louisiana.

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I’m kind of embarrassed to admit that I didn’t know, before watching this show that Tourette’s syndrome was more then just yelling bad words at random. I’ve been enjoying watching their stories,along with getting more information on Tourette’s Syndrome.

So far the Mother with the boy who plays cello is the only one that annoys me. She just comes off as so pushy & overbearing, especially with the orchestra,the boy straight out said he didn’t want to do it & she’s trying to figure out why he has an attitude? .... well duh lady.  Also the boy has  moved around so much and is always the new kid,which I’m sure it makes him nervous. I didn’t like how she made him tell people “Hi,my name is____,and I have Tourette’s! Just let him use his name if that’s what he wants. 

I like how The Older boy (orange hair) doesn’t want his TS to be his whole focus in life, but I do think he hides some of his true feelings about having TS from his mom so she doesn’t worry about him. 

Charlee’s mom said she Homeschools the little sister because she has social anxiety issues,but how does that help her deal with those issues later on in life? I was homeschooled from 7th grade until graduation for those same things and to be honest it really made it worse for me, and hard to socialize with people & still does to this day even at 25 years old. 

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My husband has Tourette’s and is very similar to Sam (the redhead). His mom is in serious denial about his tics-saying most people wouldn’t even know he had it...my husbands family was like this and it made him more uncomfortable. His mom wouldn’t even take him to a dr because she said oh we thought he just liked Star Wars and making weird sounds. I do like that this show shows that having TS doesn’t just make you a circus sideshow and it’s not just screaming curses all the time. My husband owns a successful business, has lots of friend, a wife, daughter, homeowner etc. 

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1 hour ago, Real Housewife LI said:

His mom is in serious denial about his tics-saying most people wouldn’t even know he had it...

This was especially highlighted when the doctor said it’s severe enough to consider treatment. The look on her face....

If I didn’t know he had it and saw him even for a few minutes the way he was ticking in some of those scenes, I would think *something* was unusual, not right, whatever term you want to use. It does not sound like allergies to me, as the mom alleges.

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On 9/3/2018 at 3:00 AM, Hellohappylife said:

I’m kind of embarrassed to admit that I didn’t know, before watching this show that Tourette’s syndrome was more then just yelling bad words at random. I’ve been enjoying watching their stories,along with getting more information on Tourette’s Syndrome.

So far the Mother with the boy who plays cello is the only one that annoys me. She just comes off as so pushy & overbearing, especially with the orchestra,the boy straight out said he didn’t want to do it & she’s trying to figure out why he has an attitude? .... well duh lady.  Also the boy has  moved around so much and is always the new kid,which I’m sure it makes him nervous. I didn’t like how she made him tell people “Hi,my name is____,and I have Tourette’s! Just let him use his name if that’s what he wants. 

I like how The Older boy (orange hair) doesn’t want his TS to be his whole focus in life, but I do think he hides some of his true feelings about having TS from his mom so she doesn’t worry about him. 

Charlee’s mom said she Homeschools the little sister because she has social anxiety issues,but how does that help her deal with those issues later on in life? I was homeschooled from 7th grade until graduation for those same things and to be honest it really made it worse for me, and hard to socialize with people & still does to this day even at 25 years old. 

The orchestra boy reminds of a kid I used to know. His mom taught music lesson (privately) and basically forced him into private lessons, private lesson at school and orchestra playing the violin. He hated it. And it triggered the shit out of his ASD, but the saddest thing was, he really liked playing the violin. It was all the pressure and requirements from his mom that was making him hate it. He’d talk about never wanting to play it again. Sad. 

The red headed boy, while I can appreciate not making his whole identity about Tourette’s, he and and his family have swung completely the other way. Luckily he doesn’t have any physical tics that could hurt him or others, but denying their impact on him simply because they’re easily disguised makes me worrried for his future mental health. If something happens and a tic does affect some situation he is in, I worry his entire self-image will crumble since he’s built it around the idea that his tics are a small, inconsequential speck unrelated to his identity. On the either hand, ignoring it isn’t like other dx that will/might physically cause him harm by not addressing it (at least in his particular case of Tourette’s) but the mental impact shouldn’t be discounted either.

What if your kid had a limp, for whatever reason. You raised him the same as his siblings. Never treated him any different from them. Which isn’t terrible. But never talked about or acknowledged the affect this limp might have on him. So he grows up being told he can do anything anyone else can do. Fine. Maybe he can. But he grows up, goes out into the real world. People make instant judgements about his ability. Maybe people stare and comment. Maybe people are assholes and make mean remarks. Maybe the jobs is applies for don’t hire him because they think he can’t do the physical burden of the job. Maybe he gets passed up for a raise and new position for the same reason. All of these are really shitty situations to face and we can say “oh, people shouldn’t be such assholes” but he still won’t have been taught the skills to call out the assholes making fun of him, or explain to his boss that he can do X job no problems or advocate for himself for additional accommodations to succeed, etc etc etc. 

I was a bit surprise just how surprised his mom was at the degree of his Tourette’s. You can still acknowledge the dx and empower your child and advocate for them and teach them to advocate for themselves without making the dx the cornerstone of their identity. 

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I also noted that Sam got into bodybuilding.....my husband is a naturally abnormally muscular big guy....like John Cena big....he also got into bodybuilding...not doing shows. Because that attention would freak him out..but he knew that being “big” offered him a source of protection from bullies, assholes talking etc. Yet people still do and say stupid crap. We were on a flight with our daughter who was 5 at the time & he was a few rookie ahead of us walking up the aisle. 2 jerks sitting start pointing at his back...hey hey look at the dude with Tourette’s....they shut up real quick when i said ya and this is that dudes wife and daughter so you might want to shut the hell up.

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Little Kaden and his cello really tug at my heartstrings.  Bless his heart, he tries so hard and seems so sweet and sensitive.  I cannot stand his mom, Kate.  Bring it down a notch or 10, woman.  Also, unless I misheard him, her boyfriend made a couple of disparaging remarks about both Kate and Kaden’s tics.  He referred to Kate’s tapping of her glasses as “driving him crazy” and said that Kaden’s tic-laugh sounded “maniacal.”  I didn’t like that at all.

This is a pretty good show overall.  It was nice to learn more about this condition.

Edited by SuzyLee
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I liked how they ended the season (very short season) with a positive arc for all of them: new car, graduation, acting/headshots, motivational speaking, orchestra concert. Although, I kind of feel like we didn't get as much "character development" if you know what I mean, with Charlee and Sam. It seemed a little abrupt with them. Wonder if it will come back next year with the same kids or new ones.

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