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Old May 15th, 2017, 07:00 AM   11
Kate&Lucas
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Sorry your little one is going through this

I was diagnosed last year after spending about 20 years thinking I was just a bit odd My tics exacerbated suddenly about 18 months ago though, before that they weren't really noticeable. Luckily she'll more than likely grow out of it.

You've prob been given advice and there's some good support groups on Facebook depending where you are but in my experience tics are worse when I'm tired, after trying to suppress them for a time and (worst of all) when people pay attention to them. Tics are disruptive but they're 100% not her fault so I'd speak to the teacher about maybe finding other ways to deal with it in a more inclusive way.

Sorry I don't have any advice on the behaviours. I know it's a co-morb of TS but as an adult I'm either not affected or my family are scared to bring it up

Hopefully you'e sorted a lot of the issues out now. I've been looking out for signs in Lucas but *touch wood* he's not showing any so far.



 
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Old May 15th, 2017, 19:49 PM   12
Braven05
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Thanks guys. I have hope that understanding what is going on with her so early (she's only 5 years old) and having her in therapy, beginning on some behavioral therapy will help her in the long run.

The unknown and the unpredictability of the condition is what makes me so nervous. It's been pretty hard to come to the realization that this is something that we will all be dealing with for the rest of our lives.

I'm here to support her but it's pretty hard sometimes, especially as I'm dealing with my own baggage and trying to heal and move on from the possibility of ever having another child. I guess all we can do is our best.



 
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Old May 21st, 2017, 07:09 AM   13
Xpecta
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I'm sorry to hear about your own hardships. That makes things a lot harder. Your own emotions make everything so much harder.

My son has Tourettes syndrome as well. He hasn't been officially diagnosed.

How are things going for you guys? And with her in school?



 
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Old May 22nd, 2017, 14:35 PM   14
Braven05
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So far, things are going okay. It's almost like we went through the stages of grief, ya know? Denial, anger, acceptance. We're kind of at the acceptance place now. School is almost over here so, while I gave them some informational sheets about dealing with Tourettes in the classroom, I don't think much is being done. I think they're just dealing with it. Which is fine.

She's changing schools next year so we'll make a more comprehensive plan for next year.



 
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Old May 22nd, 2017, 19:57 PM   15
Xpecta
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That's good that you're on top of it like that! How is your daughter dealing with it?



 
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Old May 23rd, 2017, 02:18 AM   16
pinkstarbinks
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Following our 4 year old is a long term ticker glad you got answers



 
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Old May 23rd, 2017, 20:51 PM   17
Braven05
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My daughter is pretty okay with it. She says they don't bother her at all. They're fairly mild, most days. Today, not so much but even the days that it's more intense, it doesn't seem to bother her.

We're just taking it day by day at the moment. I know it's bound to get more frustrating for her as she gets older, particularly when other kids notice/say things to her about her tics.

Last night before bed she said to me, mommy I don't think my teacher knows I have Tourette syndrome. I said, mommy told her about it, why do you think she doesn't know? She said, because she asks me to stop doing my "things."

So that's a little frustrating.



 
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Old May 24th, 2017, 01:43 AM   18
Parkep
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Oh no! I would be talking to her teacher, and if that doesnt help the principal. She needs support, I understand that it can be frustrating for the teacher but maybe she needs more understanding.



 
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Old May 24th, 2017, 07:25 AM   19
Kate&Lucas
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Oh gosh that's really concerning. Yes she's going to cause a distraction but she literally can't stop it just because she's told. Suppressing tics can cause them to get worse too and cause tic fits.
Do you have a Tourettes charity where you are? In the UK we have Tourettes Action and I believe they give talks and supply information for schools. Her teacher definitely needs some sort of training.



 
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Old May 24th, 2017, 10:16 AM   20
Braven05
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Luckily I don't think she's actually listening to her teacher when she asks her to stop

I printed out these sheets so that they would have information and understand what was going on with her, but I'm pretty sure the teacher just passed them on to the school nurse instead of reading them.

Good news is that there's less than a month left of school. We are transferring her to a new charter school in the Fall which will have smaller class sizes and an established resource department.

I'm not sure right now if she needs a 504 plan or IEP. We will see how next year goes, as she'll be in a much better environment. I know we're probably looking at an adhd diagnosis at some point, which will probably help with getting her an education plan.

For now, I think she's probably okay. I don't think she's getting punished or anything for her tics, I think her teacher just doesn't understand that she has no control over them.



 
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