Question about Tourettes

iVillage Member
Registered: 06-25-2005
Question about Tourettes
9
Wed, 06-30-2010 - 9:58am

I know that some of you have children with Tourette's as a co-morbid disorder. I have a close friend whose 7yo ds has Tourette's. I understand a lot of the symptoms, but I'm wondering about some of the behaviors I see that appear to be more behavior related than Tourette's. The mom seems to dismiss all the behaviors as Tourette's, but I get the sense that this kid is playing his mom some of the time.

This kid has a lot of recognizable physical tics, but the behaviors I see that have me curious are when her ds starts name-calling or cursing when he's annoyed (doesn't get a turn on the Wii, etc). It's not just that he blurts out words, but that he seems to do it very deliberately. And, if he gets a rise out of his mom (or someone else), then he does it more and more.

Then, if his mom tries to take him into another room to calm down, he runs. As he runs, he yells to his little brother to say the same things and to run away from mom with him. They laugh at mom as she tries to catch them, sometimes yelling out more words, sometimes not. Once she chased him around a park for about 45min before catching him(I wasn't there, but she told me about it).

Is this really all tics, or is some of this a behavior issue? He probably also has ADHD. Is some of this ADHD?

With my ASD kids, I have certainly seen my share of bad behavior that's hard for them to control, so I understand that some behaviors aren't intentional. I just don't get the sense that all of this kid's behaviors are unintentional.

iVillage Member
Registered: 03-26-2003
Sat, 07-03-2010 - 10:53am

I think you have some great advice so far, just wanted to offer a few more cents.

I think just like autism, when any child has a disability it can be hard to distinguish between what is disability and what is typical kid testing limits. I have seen this even in my non-verbal autistic students. They are still children after all ;-).

Many years ago I worked in a residential school and one of the students was a teenager with severe tourettes. She had a habit of using her tics behaviorally for fun or to get herself out of trouble. For instance, she would purposely use her big scream/jump tic exactly when walking by a new staff person to see them jump and then run off giggling. Kids are still kids after all so while we accomodate and modify we cannot give them a free pass because of disability or it will not serve to help them (though it was HYSTERICAL when she did that).

In addition kids with these kinds of challenges, particularly when there are many overlaps that can happen (ADHD, aspergers, tourettes, OCD often overlap in symptoms) the child often doesn't respond to discipline the same way that other children do. This makes it more challenging to figure out as a parent how to best parent and deal with these behavioral issues in a constructive manner.

I think CBT or ABA are good ideas. We do have to parent these kids differently and it takes a different skill set to do so and manage their behaviors. It doesn't mean we aren't good parents, it is just that our kids need a different hand book than typical kids and you aren't going to get the information you need on how to parent these guys from Dr. Sears.

Photobucket
Photobucket
iVillage Member
Registered: 06-25-2005
Fri, 07-02-2010 - 10:04pm
Thanks! Let me see how well she receives my suggestions for your other recommendations (CBT, etc) and go from there. Sometimes she's very open and receptive to new info, and sometimes she's defensive and takes awhile to warm up to a new idea. I appreciate your willingness!
iVillage Member
Registered: 11-28-2006
Fri, 07-02-2010 - 2:17am

If you contact me I can Send her to some TS sites that can help her. Just let me know. Tourettes is no easy thing to go thru. When your child walks thru a crowd and wants to yell FU or flip off people randomly it's not easy. I can help if she needs added support.

Lainie

iVillage Member
Registered: 06-25-2005
Thu, 07-01-2010 - 10:21pm

Thanks for the suggestion of CBT and ABA. I'll have to work those suggestions in slowly, but I think once she wraps her mind around the idea she'd be receptive. You've been very informative and helpful (and I have a request in at the library for that book)!

iVillage Member
Registered: 06-25-2005
Thu, 07-01-2010 - 10:19pm

I definitely agree with your point! Fortunately my dd is no shrinking violet, so she is not traumatized by the exchanges but annoyed by the boys' behavior, esp when traditional methods of telling someone they're bothering you don't work. Also, thankfully, my dd enjoys being a tattle-tale (the one time we're glad she loves to tattle), so she's not afraid to let us know when there's a problem. Dd just tends to fuss at the boys a lot first, which makes the situation escalate. She's done better today at alerting us quickly without talking back to the boys as much.

My friend is aware enough of her boys' issues that the kids aren't ever completely alone together, but sometimes when we're wrapped up in cooking or talking, we don't immediately notice when the small chit-chat between kids takes a dark turn until one of the kids gets louder. My friend is more responsive to her boys' behavior around other people (like my family) than she is with her own dd, which is good for us but not so good for her dd. I don't agree with her parenting style, but at least she tries to protect my dd.

If we had an experience like your ds did, where there was more trauma, I'd cut the relationship before putting dd through that. My dd actually enjoys her relationship with them (when they're not annoying her)!

iVillage Member
Registered: 11-28-2006
Thu, 07-01-2010 - 9:38pm

I agree with both of you. Wow, I don't care if it's a tic or not, I would never let my son stab or physically harm anyone period. That line is never crossed. And just because you have a disability like tourettes doesn't mean you have free rein on life. There are some things I have to tell my son that we need to work on, because when he's an adult, no one's going to care if he has TS or not when you do something thats against the law.

For your dd, you know if it were me I would try to limit her time with the boys, especially alone so she doesn't have to put up with the behaviors either. Telling her to come get an adult is also an excellent idea. Also let you friend know that CBT therapy can help (because it teaches you how to change your behavior) and even ABA can help with this matter.

Anyway I have had some of the bevahvor mentioned, like the extreme hyperness and running around etc, but not the other stuff like hurting people. As I said again, thats a line that cannot be crossed.

I hope I helped in some way, even a little bit. I definetly see your side as it sounds really hard since she is such a good friend.

iVillage Member
Registered: 10-08-2009
Thu, 07-01-2010 - 5:03pm

iVillage Member
Registered: 06-25-2005
Thu, 07-01-2010 - 4:15pm

I'm glad you mentioned the smiling tic. This boy always smiles and giggles after doing something wrong. I think it's probably a tic, but it sure makes it hard to figure out when he seems to be ENJOYING his bad behavior.

Another of the difficulties in figuring out this kid's tics is that the ones that look most like bad behavior are usually directed toward my 6yo dd. My dd is borderline ADHD and quick to react when she's being tormented (they make fun of her name, threaten to kill her incl grabbing sticks/bricks to threaten her, or curse at her), so I'm sure that makes things escalate rather than defusing the situation when she insists on responding to their behavior.

The mom tells me that where she used to live her boys seemed to direct more of their negative tics(?) toward one little girl there, too, and it appears that they are transferring that energy to my dd. Because we live so close and are like family, we spend a lot of time together. Avoiding each other is not an option.

We are working on reinforcing having my dd come get an adult when the boys start tormenting her, but even then it's awfully aggravating to hear the boys saying the things they say with very little repercussion or concern. Even after-the-fact they never seem to regret their behavior.

Because dd has some AS siblings, it's easier for her to understand the concept that the boys aren't necessarily trying to be mean but have a hard time controlling themselves. It doesn't make it FEEL any nicer to her (or me), though. Fortunately they also have moments where they really enjoy each others' company.

I'll have to look at that book you mentioned. It will do me good to understand Tourette's better.

I may just not be "getting" Tourette's, but I still also think that a difference in parenting styles and what appears to be a lack of any significant consequence for bad behavior contribute to more problems with these kids than just Tourette's. One day after watching the youngest repeatedly stab his sister with a pencil, mom took the pencil away. The boy SCREAMED for a long-time until he got the pencil back, at which point he promptly began stabbing his sister again. The sister took the pencil away. She got in trouble for taking the pencil away, but the boy never had any consequence for stabbing his sister. I think mom's had enough of the boys' behavior that she may sometimes unwittingly be reinforcing their behavior by just trying to avoid dealing with it.

iVillage Member
Registered: 11-28-2006
Wed, 06-30-2010 - 5:58pm

I will be honest, it is hard to separate the difference between a tic and bad behavior, but one thing I can say is the bad behavior can be a tic and be misunderstood at the same time.

For example I have a friend whose son has Tourettes and he would get a periodic "smiling tic" He would get in trouble with something on the playground, get anxious due to the yard lady yelling at him, and then the smiling tic would appear, which would get him in more trouble because he looked like he was just disrespting her. See what I mean?

My son has TS, and he has coprolia and copraxia. The Coprolia and Copraxia mean the bad words and gestures. Many people think that everyone who has TS has the cursing tics, but in reality only 5-10 per of people who have TS have the bad words etc.

Here's a way to help determine whether it's tics or bad behavior. First look at the environment the child is in. Is it exciting, (good or bad excitment) stressful, or chaotic? This can be anything from being in a crowd at chucky cheeses to just playing a video game that causes excitement or anxiety. Tics usually happen around those times. Other triggers are when the child is hungry and or tired.

Another thing is, the bad behaviors you see with her son (wether a tic or not) is also a co-mobid of TS, just like TS can be a co-morbid of AS. But I notice when my son's behaviors kick up a notch, it's usually when he is most anxious, so the trick is to try to figure out how to lower that anxiety, which in turn automatically helps lower the tics and helps with the behaviors.

There's a really good book out there by James Patterson called Against Medical Advice (or something like that) that tells the story, from the point of view from the person that actually has TS. I guess the family is friends of james patterson and thats why he decided to write the book.

It was really good and it talked about how this kid felt, and how he really couldn't stop himself because the urge to do things were so strong. And were talking about the urge to shoot paintball guns at the garage door. Things that really look deliberate but are not always the case.

One last thing, I can always tell the difference between attention seeking behaviors versus tics. When I see a behavior that I'm not sure I ignore it and walk away. If the behavior is for attention, then it eventually stops, but if it's a tic, it will continue. And really thats the best thing to do anyway because your supposed to ignore the tics because frankly the child can't help himself.

Lainie