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Explaining tics to 6 year old friends


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Looking for help here.

 

My 6 year old daughter is in daycare for the summer, and she goes on field trips twice a week. They walk to the events and she has to hold hands with a partner. The problem is that one of her main tics right now is a hand squeezing tic (she does this on both hands). It is barley noticable to others, so her teacher and friends have not yet noticed this tic. BUT...when she holds someone's hand she squeezes 5-6 times, then relaxes...only to do it again a few minutes later. She told me last week that her partner kept asking her to stop squeezing his hand, to which she replied that she couldn't help it. The boy didn't believe her, so he squeezed her back. I don't think it really got out of hand, but I have a feeling that this is going to be a problem with every trip.

 

We only discovered that she has PANDAS recently, and have been explaining it to her in pieces on a 6 year old level. She doesn't even know the words tics or PANDAS. She only knows that strep affects her differently than others. In her words the strep "buggies" fight her brain and sometimes "flip her angry switch" and make her body do things she doesn't want or mean it to do.

 

Any advice on how to deal with this. I plan to speak with her teacher, but am afraid it might fall on deaf ears as I honestly don't think that she believes in PANDAS.

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Is there any chance that your daughter and her partner could both hold opposite ends of a short, thick dowel or a rope or other object? That way they would be connected, but as she squeezed it would not bother him.

 

That's a thought. I'll run it by the teacher. It would be great if they could do something for the whole class so that dd isn't singled out for having to hold something other than a hand. (I just want her to feel "normal".)

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What you describe sounds like it could be choreiform movements (like a milk maid's grip), rather than a tic. We told our son he was allergic to strep, like other people are allergic to bees, peanut butter or pollen. I'd ask the teacher if there were some other option - like maybe they could both hold one end of a rope or bandana. Explain that your daughter has an autoimmune disease that causes a movement disorder. Don't describe it as controversial (not even sure I'd use the word PANDAS). I found that when I presented things matter-of-factly, it's accepted by most people. You can tell her the disease can go into remission, but right now it's active and your daughter doesn't need anything that calls attention to it. You don't need to apologize or "ask" for cooperation. I think if you're polite but your voice carries an expectation that this isn't something negotiable, that an accommodation is both reasonable and expected, you will hopefully be able to make short work of it. Good luck!

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What you describe sounds like it could be choreiform movements (like a milk maid's grip), rather than a tic. We told our son he was allergic to strep, like other people are allergic to bees, peanut butter or pollen. I'd ask the teacher if there were some other option - like maybe they could both hold one end of a rope or bandana. Explain that your daughter has an autoimmune disease that causes a movement disorder. Don't describe it as controversial (not even sure I'd use the word PANDAS). I found that when I presented things matter-of-factly, it's accepted by most people. You can tell her the disease can go into remission, but right now it's active and your daughter doesn't need anything that calls attention to it. You don't need to apologize or "ask" for cooperation. I think if you're polite but your voice carries an expectation that this isn't something negotiable, that an accommodation is both reasonable and expected, you will hopefully be able to make short work of it. Good luck!

 

I wondered about the milk maid grip, as I've heard this term before. Is it important to determine if it's a tic or choreiform movement?

 

Thanks for the other advice. I plan to speak with the director of the daycare first, and will explain it as you said (without the word PANDAS). Hopefully we can agree on a solution so it's not an issue. The next trip is tomorrow!!

Edited by worriedmommy
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as you may know my ds main/only presentation is tics...any co issue pales in light of this and are so non improtant to his everyday life they may not even be a co-issue..(i would live with those as no one could would think the others are of any significane)

 

anyway..my ds get by with ..."just can't help it"...so far so good, he is a total boy and things don't seem to bother him

there will be times that kids will not understand.....but if you child tells them, that they simply have no control over it, but maybe might say(not sure if i would cause could back to bite them, on a down day)i wish i could stop doing this....

but for me it like blinking my eyes...try not to blink your eyes...and you don't even know you blink your eyes because your body just does it...its the same for me and my tic

 

the teacher needs to have vigilent ears for a while till the kids get used to it and explain everyone is different...someone is tall, someone has brown eyes, you're good at math, that person cant' ride a bike and dd sqeezes hands right now...and tomorrow may be different....because life is always changeing

 

i don't know if that helped any..

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Worriedmommy,

 

I am copying what my son's 3rd grade teacher emailed to me awhile back. Before the beginning of school, I took in copies of some of the medical papers to the principal and for the teachers/nurses so they could read and understand. The homeroom teacher asked me if it would be ok to explain to the kids, I gave her the example of the hiccups to use:

 

I shared with the class about Jackson this afternoon. I explained that he has something that causes him to have tics (not the same as the bug). They were very understanding and empathetic. I talked to them about just being kind and compassionate to him, and to not come up to him and say anything about the tics. They came up with the idea to make a card of encouragement for him, so we will work on that tomorrow. Zoe even said, “If there was a ‘most courageous’ person of the month, I think Jackson would be it”. They brought up the idea that they would stick up for him if another student made fun of him. We used the hiccups example and talked about how frustrating it would be to have the hiccups all the time and not be able to stop. I explained to them that this is just something that happed to Jackson, it is not contagious and he didn’t do anything to cause it. They understand the importance of keeping the information within the class family and to really respect and support Jackson like a brother.

 

Linda

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For future field trips, talk to the teacher ahead of time if she could be buddied with a closer friend. If not, request that a girl be her partner. Honestly, girls will find the squeeze either playful or just not have a problem with it. Boys tend to be more aggressive and would interpret the squeeze as something they need to 'defend".

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Is there any chance that your daughter and her partner could both hold opposite ends of a short, thick dowel or a rope or other object? That way they would be connected, but as she squeezed it would not bother him.

 

That's a thought. I'll run it by the teacher. It would be great if they could do something for the whole class so that dd isn't singled out for having to hold something other than a hand. (I just want her to feel "normal".)

 

Yes... do it with the whole class... absolutely. I bet it would benefit several kids as some kids just plain do not like holding hands.. and it would help the sensory defensive kids too.

 

Hey ... maybe we should market that idea <_<

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Also, if you don't want to use the word PANDAS, you can say "motor tics, like in Tourettes. Most people have heard of Tourettes, and really, the camp director doesn't need to know all the details -- just needs to do what you want.

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I just recently explained to my 5 year old that his sounds/movements are tics. I just felt it was the right time so that he could start explaining this to people who question him. I am hoping that he can matter of factly say, "what I am doing is a tic and I can't help it". As far as the non-believing teacher is concerned, I would just use the word "Tourettes" instead of "PANDAS". Seems to be taken better...

 

 

Looking for help here.

 

My 6 year old daughter is in daycare for the summer, and she goes on field trips twice a week. They walk to the events and she has to hold hands with a partner. The problem is that one of her main tics right now is a hand squeezing tic (she does this on both hands). It is barley noticable to others, so her teacher and friends have not yet noticed this tic. BUT...when she holds someone's hand she squeezes 5-6 times, then relaxes...only to do it again a few minutes later. She told me last week that her partner kept asking her to stop squeezing his hand, to which she replied that she couldn't help it. The boy didn't believe her, so he squeezed her back. I don't think it really got out of hand, but I have a feeling that this is going to be a problem with every trip.

 

We only discovered that she has PANDAS recently, and have been explaining it to her in pieces on a 6 year old level. She doesn't even know the words tics or PANDAS. She only knows that strep affects her differently than others. In her words the strep "buggies" fight her brain and sometimes "flip her angry switch" and make her body do things she doesn't want or mean it to do.

 

Any advice on how to deal with this. I plan to speak with her teacher, but am afraid it might fall on deaf ears as I honestly don't think that she believes in PANDAS.

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I spoke with the director of the daycare and the teacher yesterday. Today the teacher is going to be dd's partner, which is good b/c she'll have a chance to feel dd's hand squeeze tic. Going forward, she's going to be sure to only pair dd with a few close girl friends, who are very understanding. I've asked that dd and partner always be at the front or end of the line where a teacher can be close to listen if there are comments/problems on the hand squeezing.

 

As for the teacher not believing, it's mostly a matter that she really is very unobservant, so she says that she doesn't see or hear anything unusual from dd. Even last Feb when dd was doing kneebends across the room the teacher "didn't notice". Also, when dd's anxiety/fear was so extreme that she was afraid to go to the bathroom alone and would up wetting her pants 2 days in a row, the teacher still didn't seem to think that was overly concerning. Luckily the teacher's aid is great and she worked out a system with dd where she stood directly outside the bathroom, and kept track of the # of trips to be sure dd was going enough. Thankfully that fear has subsided and is no longer an issue.

 

I really think nothing will convince this teacher. At this point I'm just trying to get thorugh the next 5 weeks until 1st grade. Dh and I have spoken with the new school and they are both aware of PANDAS, and are very sympathetic and understanding. They are very committed to making dd's experience in the school a happy one, and are going to work with us on a 504 plan for her.

 

Thanks all on the other replies too. I would like to address this to dd's 1st grade class in a matter of fact way so they can look past her tics and see her for who she is.

 

 

I just recently explained to my 5 year old that his sounds/movements are tics. I just felt it was the right time so that he could start explaining this to people who question him. I am hoping that he can matter of factly say, "what I am doing is a tic and I can't help it". As far as the non-believing teacher is concerned, I would just use the word "Tourettes" instead of "PANDAS". Seems to be taken better...

 

 

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