Parents of kids with noisy tics, who are in school, need advice re: other kids **UPDATE #17** - Mothering Forums

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#1 of 23 Old 09-04-2008, 10:28 AM - Thread Starter
 
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My dd is in third grade, and is currently in a phase where her main tic is a noisy thing she does with her tongue/mouth. It's hard to describe. Anyway, for the first time she's faced with kids telling her to stop making noise. One kid even said "You make funny noises. You have to stop that." She is feeling hurt and tense. She can't stop. And she doesn't say anything to kids when they tell her to stop, she just stands there hurting. And she cried last night.

Obviously, we need to help her cope with other kids when they notice and comment on her tics. It would be helpful to me if anyone could share what helps their kids with tics, if there's anyone here who has coped with this. What do your kids say to other kids? What did you do to help? How, if at all, was your child's teacher involved?

This sucks. We knew it would happen. But it sucks. And we should've been more prepared. But we never wanted to say to her "someday, people are going to tell you to stop or tell you that you make funny noises."
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#2 of 23 Old 09-04-2008, 12:59 PM
 
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Ouch, mama, I feel badly for your DD.

I imagine the additional stress of children telling her to stop makes the clicking happen even more often.

I don't have much advice, except that eventually it will become background noise to the other kids. Its so hard at this age, though, because they see her as breaking the "quiet in the classroom" rule and their grasp of rules is so black and white with zero ability to see exceptions at that age. I think you will have to enlist the aid of the teacher to provide information to the other children and support to your DD.

Does she have a simple script that she can respond to the other kids with? "My tongue can't help making that noise right now." One that the teacher can back up.

Does she have any ability to substitute another tic for that particular one or is it mostly out of her volitional control? Would chewing gum or substituting another competing behavior help (behavior that can't occur at the same time as the motor tic because its physically impossible - but one that is satisfying and pleasant to do - I'm trying to think what that could be, and chewing gum or having something in her mouth are the only things I can think of atm. Bubble gum in particular, if she can make bubbles, because it involves complex oral muscle movements).
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#3 of 23 Old 09-04-2008, 01:00 PM
 
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I don't know. I do know that her peers might be frustrated themselves with her noises - and that's a valid point for her to understand as well. I'm not minimizing her needs to feel secure and not be attacked, just suggesting that you consider at least explaining to her that her noises might frustrate other kids when they're concentrating.

What does her teacher do in those circumstances?
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#4 of 23 Old 09-04-2008, 01:18 PM - Thread Starter
 
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I'm waiting for a call back from her teacher. I've also got a call into her psychologist, because I think now would be a good time to revisit helping dd understand her tics, revisit coping with anxiety (which is high again), and work on ways of both responding to kids and (possibly) managing her tics (which, as the psychologist told us before, is hard to do and a child needs to be very highly motivated to work on controlling tics).

From talking with my dd, it's not happening in the classroom (so far) but when she's in line for lunch/other. If it were disrupting kids' ability to work, I would assume (I know, never assume) that the teacher would've let me know. And dd says the teacher has not asked her to stop ticcing.

I get that the noise can be irritating. It irritates me sometimes too, so I get where the other kids may be coming from. But it really is out of her control. She tries to stop and can't. So I think she needs a way of coping with others, kwim? Rather than just sitting there feeling bad (and I'm sure the other kids aren't trying to make her feel bad).

Bellingham, I hadn't thought of it when I first posted, but I have asked her to tic another part of her body once before (a long time ago, when a tic was literally interfering with her eating) and that one time she did it for a very short time. It might be worth suggesting that she try ticcing another part of her body instead, we could try it as an experiment at home.

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Does she have a simple script that she can respond to the other kids with? "My tongue can't help making that noise right now." One that the teacher can back up.
I think this is what she needs. I simple, clear script.

Aaack. I just hate seeing her feel bad about something she can't control. I wish I could just fix it for her.
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#5 of 23 Old 09-04-2008, 03:39 PM
 
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I feel like my initial response was rude. I didn't intend to even post it b'/c I couldn't figure out how to say it gently and without sounding crass or rude, but hit send accidentally.
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#6 of 23 Old 09-04-2008, 04:06 PM
 
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Magella to you and your dd. I've heard forms of hypnosis can help with tics. I'm not sure how successful this would be, but other types of relaxation may at least reduce them in number. I'm so sorry you all are going through this.
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#7 of 23 Old 09-04-2008, 06:11 PM
 
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Magella~ Does your dd have OT services? I'm thinking that either A. the OT could talk to the class or B. Talk to her teacher and give her literature on tics. Ask her if she (or the school OT) could come talk to her peers about tics.

This is what they did for my son and it really helped. As a matter of fact, the kids are very protective of my ds now They make sure others know that sometimes he just needs to "make noise".

Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#8 of 23 Old 09-05-2008, 01:01 AM
 
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1) I would absolutely not encourage a child to modify a tic like this. There are tics, some would call them compulsions since they involve others, that I encourage DS to modify because they really do violate people's personal space--like poking others or licking them or licking objects.

I have also encouraged him to delay, step out of the room, or "soften" some things like loud shrieking tics. I think I've gone too far with the latter, as he once described to me there there were certain tics he controlled most of the time, and that to do this he had to do the tic over and over in his head. He really can't think about much else while trying to stop a tic. I really don't want him to be going through this most of the time.

2) There are a couple of options for talking with others. One is explaining Tourette's Syndrome to the whole class with help from you or a professional. A number of parents on the Tourette's Syndrome Now What message boards have done this and can give pointers. Some use something called Ben's Book, others use the HBO special. One of the best learning experiments, IMO, is to ask everyone not to blink. They will try not to blink but will eventually have to. Some will blink a bunch of times when they finally "give in". You explain that our brains tell us to blink often because that keeps our eyes moist, but we'll get a strong urge to blink before our eyes even feel dry. Eventually, you have to blink because your brain keeps telling you to blink. A person with Tourette's has a brain that tells them to make certain noises or movements over and over. Sometimes they can hold off for a bit, but it takes a lot of effort, and eventually they have to do it, just like you eventually blinked even though you were trying not to.

My DS is 7. He also has Asperger's, and he doesn't always notice that the people asking him to be quiet are talking to him . Figuring out what to say to others is one of the things I really want to work on this year.

Sherri
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#9 of 23 Old 09-05-2008, 10:32 AM - Thread Starter
 
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Thanks everyone. Sherri, thanks for your advice. I won't be asking her to modify her tic. She's got enough anxiety. We'll focus on the education of others aspect.

Part of the problem is that since the tics have never been a problem and we've had other priorities (like anxiety, aggression) to deal with, we have no diagnosis regarding the tics. We did see a neurologist way back in order to rule out seizures, but didn't get beyond that with the tics. So we have no name for her tics, though I think she fits the TS criteria. This is a problem in that, well, it makes it harder to explain what's going on. We say "she has tics" and everyone else is like "what does that mean, why does she have them?" and we're like "um....she just does?" KWIM?

Anyway, the teacher was extremely helpful. She's going to address the issue, without going into specifics about dd, during their social skills curriculum time. Tolerance, differences, people doing things they can't help doing, etc. She's also going to talk with the principal, head teacher and school psychologist to see if they have any experience or advice dealing with this (and, again, because we don't have a diagnosis--well, it makes everyone unsure how to best proceed, if that makes any sense). For now I think this is a good start. I love the example about trying not to blink, and I do think at some point we'll have someone talk to the class about tics.

While the teacher does this, we're going to set up a time to talk with dd's psychologist to address the issue of diagnosis for the tics. It will help us, it will help the school, it will help dd. Clarity is a good thing, it will help us better understand how to help dd. Also, I'd like dd to work with her a bit on how to respond to others, and on managing anxiety.

I found some great information from our local TSA chapter, which included sample letter to teachers, sample classroom presentations, sample letters to classmates' parents about classroom presentations. This will be very helpful.

bdavis, no worries.
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#10 of 23 Old 09-05-2008, 11:33 AM
 
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#11 of 23 Old 09-05-2008, 04:10 PM
 
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Cognitive Behavioral Therapy is a way of teaching yourself a new tic to replace the old one that is harmful, causing social issues, etc.

I'm not saying that is what she needs, but I have found it very helpful with my own tics.

In a nutshell, you identify the very first stage of the tic and practice doing a different specific action when that happens. You are still going to do the same tic for a while but gradually it will fade, being replaced by the new one.

As you said, moving it to a different part of the body, or doing something different in the same part of the body.

I have rotating tics. One of them is a contraction of my neck muscles that goes up to my lips. It isn't harmful to me but it is very grotesque for other people watching it. Not so good in social situations. So I've paid close attention to notice where the tic starts and I try, when I feel that happening, to move my shoulders down, open up my chest, and relax that part of my body as much as possible. Which results in me standing taller, looking more confident, and moving the muscles down instead of up. I don't always succeed. But the more I do it, the less the muscle memory of that initial tic is strengthened, and the less it doesn't feel "right" until I do it.

Early intervention specialist and parent consultant since 2002.
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#12 of 23 Old 09-05-2008, 04:18 PM - Thread Starter
 
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PikkuMyy, dd's psychologist does cbt and has experience doing the habit reversal training with kids who have tics. It's hard to say right now whether or not dd will work with her on that at this point in her life. I think that's something she'll decide on when she's working with the psychologist. I'm glad to hear that this works for you when you need it, it's really helpful to hear your perspective.
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#13 of 23 Old 09-06-2008, 12:23 AM
 
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While it is usually a bit of a process to diagnose Tourette's Syndrome, it is much less of a big deal to diagnose "transient tic disorder" or "tic disorder--NOS". It may be that a pediatrician or psychiatrist would be willing to make that dx and ask the school to write a 504-OHI about it. You can tell the teacher that most of the educational materials are designed for Tourette's Syndrome, and that the info. would generally apply even though she has a different dx. The difference is all about how long and how often you've had tics and whether you have both vocal and motor tics--it's not as if there's a difference in necessary accommodations.

I would suggest asking your daughter if she wants to be identified/involved in making such a presentation. Sometimes we assume that kids don't want to be identified when they are fine with it. Some kids read the material available, get excited about it, and want to be part of a supportive presentation. There is also a risk that a very general presentation on accepting differences and things people can and can't control would be so general that the kids would just end up confused about why they were being told this and what, exactly, was being talked about.

Sherri
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#14 of 23 Old 09-06-2008, 09:28 AM - Thread Starter
 
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Thanks, Sherri! That is enormously helpful.
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#15 of 23 Old 09-06-2008, 07:49 PM
 
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Speaking as a teacher who has worked with that age group, the explanation that I have found makes the most sense is drawing an analogy with sneezing. Let her know that while sometimes she might be able to control it a little (the way you might be able to delay a sneeze for a moment while you turn away or get a tissue) she can't stop it.

If I were the teacher I'd sit the group down (with or without her -- it should be up to her, some kids eagerly participate in the explanation for things like this, others find it embarrassing and would rather be absesnt) and explain the sneeze analogy and then make it clear that asking her to stop is unacceptable. The teacher could then explain to her classmates that she knows that none of HER students would ever hurt her by asking her to stop doing something she can't control, and that they can help her too by standing up for her in case a child from another class doesn't understand and says something.
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#16 of 23 Old 09-06-2008, 08:15 PM - Thread Starter
 
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Thank you, Momily! This is this teacher's first experience with tics like dd's also. So we're both trying to figure it out. I appreciate your sharing your experience.

Everyone has been so helpful! Thanks so much!
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#17 of 23 Old 09-25-2008, 04:35 PM - Thread Starter
 
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So, we ended up asking dd if she wanted someone to talk to her class about her tics. She said yes, and we kind of put off requesting this from the teacher for a couple of weeks while we met with the psychologist and found dd some books about Tourette's to read and just dealt with dd's feelings about the kids at school. Then just as I really needed to talk with the teacher because the next day was dd's appt. to sort of plan about talking to the class, I realized I'd never asked dd if she wanted to talk to the class herself (I'd just assumed she wouldn't want to). Well, dd *jumped* at the idea of talking to the class herself, about her own tics. She LOVED the idea.

So on Tuesday, I sent a letter to the teacher on her behalf, requesting permission to speak to the class and giving an idea of what dd would talk about. Later that morning the teacher called and was thrilled, she thought it was a great idea and suggested having the school psychologist there when dd spoke to the class in case the kids had questions that were hard for dd to answer. I thought this was a great idea (dd didn't want me there , little miss independent). The teacher said it was so important that she would *make time* for dd to present *whenever dd was ready.*

So on Tuesday afternoon dd met with the psychologist and talked about what she might say. She stayed up late (for her) on Tuesday night writing down her words and making pictures on the computer and drawing and practicing. Yesterday morning (Wednesday) she asked her teacher if she could do her presentation today (Thursday). She was so excited! I couldn't believe it. Yesterday she practiced more and added more things to say.

She was so excited going to school this morning. You should have seen her smile. This afternoon, she spoke to her whole class about tics. She asked them questions, they asked her questions, she used the wipe-off board. She said it was great! And lots of kids said they thought they had tics or knew someone who had tics. She's so pleased.

I am so proud of her and so in awe. Did I mention she isn't 9 yet? What a brave, strong, confident girl. Just amazing.
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#18 of 23 Old 09-25-2008, 06:52 PM
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That is amazing! :
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#19 of 23 Old 09-25-2008, 06:55 PM
 
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What an awesome update!! :

Mom to dd (8), ds (6), and dd (1)

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#20 of 23 Old 09-26-2008, 12:26 AM
 
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Your update just brought me to tears. It is amazing how strong and resilient our kids can be when given the chance. You are one awsome mama for working so hard to help her find a way to deal with this that was not only effective but also a big confidence booster. to you and your dd.
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#21 of 23 Old 09-26-2008, 02:06 AM
 
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Well, didn't that turn out better than anyone might have imagined. Since about 10% of kids have transient tics, the possibility that they have tics or know someone with them is certainly high, although I've heard that sometimes 9 out of 10 students will say they have tics after a presentation like this (and they are on a continuum with certain tensional outlets or mannerisms). Another really awesome aspect of this is that your daughter will now be so much better able to respond to comments about her tics because of this experience.

Have you ever read Brad Cohen's book? (Front of the Class, I think it's called). He has very obvious Tourette's, and he writes about his experience very, very well, IMO.

Sherri

p.s., and just :
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#22 of 23 Old 09-26-2008, 02:25 AM
 
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She sounds like a totally amazing little girl. You should be so proud :

Mom to:

Three big girls  twins.gif (10) + joy.gif (almost 9!); 

One little boy ROTFLMAO.gif(6) and a full on toddler diaper.gif  (8/12) born with TAPVR heartbeat.gif (repaired at 6 days old).

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#23 of 23 Old 09-26-2008, 09:39 AM - Thread Starter
 
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Quote:
Originally Posted by JohannasGarden View Post
Since about 10% of kids have transient tics, the possibility that they have tics or know someone with them is certainly high, although I've heard that sometimes 9 out of 10 students will say they have tics after a presentation like this (and they are on a continuum with certain tensional outlets or mannerisms).
Interesting! I thought it was great that so many kids thought they had tics or knew someone who does, because whether or not they have transient tics, chronic tics, tensional outlets or mannerisms--they can relate in some way, which is good!

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Originally Posted by JohannasGarden View Post
Another really awesome aspect of this is that your daughter will now be so much better able to respond to comments about her tics because of this experience.
I was just saying this to my sister yesterday.

Quote:
Originally Posted by JohannasGarden View Post
Have you ever read Brad Cohen's book? (Front of the Class, I think it's called). He has very obvious Tourette's, and he writes about his experience very, very well, IMO.
I just read it, and it is amazing. Very inspiring.
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