Behavior Challenge Thread

Sending a :hug: to all having Flu, Hills, Doing math (EWWWW) and those needing vacations

We are leaving Thursday the 3rd for a mini labor day vacation at WDW- I can hide at least 1 person in my suitcase :rolleyes1
of course you need to get to Orlando...

Saveaquarter: I am hoping they find out what will help your DH- When I was younger I had to go on a VERY Soft diet and I ate lots of baby food - not meats (ick) but rice cereal and fruits, sweet potatoes - not real food mashed up but baby foods. I couldn't eat a real mashed up banana it would give me problems to put it nicely. But baby foods didn't bother me.
everything had to be bland and very soft. my tummy healed up about 3 weeks later and I could eat some real foods again but it took 6 months before I could eat meat or salads.
 
I'm lovin' the office sigs on this here thread, btw.

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J is absolutely in love with the show. Not that I'm not, of course. We're working our way through the previous seasons before the fifth comes out on DVD. He has a HUGE crush on Pam.

Saveaquarter: I am hoping they find out what will help your DH- When I was younger I had to go on a VERY Soft diet and I ate lots of baby food - not meats (ick) but rice cereal and fruits, sweet potatoes - not real food mashed up but baby foods. I couldn't eat a real mashed up banana it would give me problems to put it nicely. But baby foods didn't bother me.
everything had to be bland and very soft. my tummy healed up about 3 weeks later and I could eat some real foods again but it took 6 months before I could eat meat or salads.

Wow, that must have been awful. J always says if he could only change one thing that's wrong with him it'd be his inability to process foods the way he used to.

Hey Saveaqarter, I'm going to play around with some thoughts on foods for DH, so give me a day to brainstorm. I wonder what's going on with DH? Protein is bothering him, too? I'm guessing Diary is in that grouping, too. When I was a teenager, I was having issues with eating meat and processed foods. Meats in particular made me cough up blood or throw up. It was really fun. So for several years, I only ate vegetables and starches. It went away after about 3 years, but I wonder if I feel so much better right now (other than flu) because I'm eating that way again. There is nothing worse that the feeling that you are going to get sick from eating things. It gets it's own category under eating disorders, for sure.

What's his comfort food? What foods make him upset? What does he think is his favorite meal? Can you tell I'm used to specialty cooking for very determined little people?

He's honestly terrified of most foods, especially those that are either new, or something he hasn't had in a while. There's so little that stays with him, and it's hard to watch. To make matters worse, he's having a hard time gripping things now, and can't cut his own meat most of the time. He's so embarrassed by it and it's heartbreaking to watch.

His comfort foods and favorite meal is pork chops and mashed potatoes. Potatoes in general, especially baked, are on thing that he has always loved and can still stomach. Sour cream is the only thing that's been spared from his dairy sensitivities, which is good since he'll eat it right out of the container if he has his way. Thank you so much for your help, we're starting to run out of ideas and recipes.
 
SaveAQuarter, I've probably just missed the explanation for this, but what kinds of stomach problem is your husband having? Is it his gall bladder? Some of your comments make me think of my sister's gall bladder issues. But some of your descriptions make me think of posts I've read on the organic acidemias listserv....they have kids who have all kinds of food intolerances and use different supplements. I think their website is oaa.org if you want to look thru there and see if there's any helpful info! I know at one point I downloaded a document on special diet plans.......I will look and see if I have that still saved - it could maybe spark some ideas for him to try.

My dd has a rare metabolic disorder; she is very fortunate that she doesn't have to severely modify her diet........some of the things I read about the other parents going through are really extreme, and their kids have sooo many feeding issues.
 

Hello All,

Just an update. My dd is having mounting difficulties at school. She seems fine when I pick her up and then slowly throughout the afternoon "ramps up" until she is expressing anxiety through scripting and obsessing over going anymore. I was hopeful she would decompress this weekend but yesterday morning and this morning there is the painful separation and obsessing about hating school. I contacted the Autism leader and she hasn't gotten back to me on this. I hope they can do something to nip this. I keep wondering if there's something that can be done to help her anxieties or whether they'll be there no matter what. :confused3

On a brighter note, my dd was chosen as the "Student of the Week." This is a very high honor and they recognize the student in an assembly before the whole school on Friday. They invited me to attend but my dd is saying she doesn't want to go up before the whole school to get her certificate so I don't know whether to go ahead and see how it goes or ask them to give her certificate to her in class.

My dd is saying the other kids make fun of her and although the teacher stops it they continue to start this everyday. They make fun of her chewy necklace so I talked to her about whether she wants to just ignore the kids or wean off the necklace. She states she cannot go without the necklace. Any thoughts on this anyone? What does everyone do with the oral fixations as the child gets older? The OT said to wean to gum but I don't know if the school would allow this?

Also, we went to a birthday party in our neighborhood and the kids were all running around while my overstimulated and fearful dd clung to me and buried her head in my lap. One child ran up to my dd and tried to get her to play and then said "You are so weird!" This broke my heart and I am really seeing how the other kids are starting to realize she's different and doing what kids do. It is going to be ultra important to teach my dd to be strong and not let this get to her. I didn't know whether to be the meddling parent and tell the kid "that's not nice" or just let it drop. After all, kids will be kids and what can you do?

Hope all is well with everyone.
:goodvibes
 
Hello All,

Just an update. My dd is having mounting difficulties at school. She seems fine when I pick her up and then slowly throughout the afternoon "ramps up" until she is expressing anxiety through scripting and obsessing over going anymore. I was hopeful she would decompress this weekend but yesterday morning and this morning there is the painful separation and obsessing about hating school. I contacted the Autism leader and she hasn't gotten back to me on this. I hope they can do something to nip this. I keep wondering if there's something that can be done to help her anxieties or whether they'll be there no matter what. :confused3

On a brighter note, my dd was chosen as the "Student of the Week." This is a very high honor and they recognize the student in an assembly before the whole school on Friday. They invited me to attend but my dd is saying she doesn't want to go up before the whole school to get her certificate so I don't know whether to go ahead and see how it goes or ask them to give her certificate to her in class.

My dd is saying the other kids make fun of her and although the teacher stops it they continue to start this everyday. They make fun of her chewy necklace so I talked to her about whether she wants to just ignore the kids or wean off the necklace. She states she cannot go without the necklace. Any thoughts on this anyone? What does everyone do with the oral fixations as the child gets older? The OT said to wean to gum but I don't know if the school would allow this?

Also, we went to a birthday party in our neighborhood and the kids were all running around while my overstimulated and fearful dd clung to me and buried her head in my lap. One child ran up to my dd and tried to get her to play and then said "You are so weird!" This broke my heart and I am really seeing how the other kids are starting to realize she's different and doing what kids do. It is going to be ultra important to teach my dd to be strong and not let this get to her. I didn't know whether to be the meddling parent and tell the kid "that's not nice" or just let it drop. After all, kids will be kids and what can you do?

Hope all is well with everyone.
:goodvibes
First :hug:

As far as dealing with the school, you are doing the right things as far as contacting the autism specialist, keep in touch with her teacher etc.

As far as the other kids, it's heart breaking. DS (6 and going into first grade) came home from Kindergarten saying no onelikes him and he calls himself a freak. We talked to the instructional support in his class room and he says the same things to her. We are working on getting him in a social skills group (still haven't heard back from them ughh!). We tell him it's hard. That sometimes people don't understand him. There are a couple of kids in his class (girls) that are pretty good with him. We tell him that if so and so calls you a freak then they're not really your friend etc. Then we try to foster positive relationships outside of school. Mine start back next week and he thinks he wants to go back. I did notice his shirt was soaked last night. He chews on the necks of his shirts when he has a lot of anxiety. But he can't verbalize what's wrong. It's hard.

All I can say is keep doing what you're doing. It is tiring and it is frustrating and your DD is lucky to have you as her mom.

To everyone. I just want to repeat what I've said before. I am so grateful for our little community here on this thread. While we don't know each other in the skin, we have this common bond. I can come and say my kid is screaming for an hour. And I get hugs and advice (solicited advice). Not dirty looks and unsolicited advice or "give me a week with him, I'll straighten him out, you're not tough enough".

Because we've walked in each others shoes. Yes each of our children present us with their own unique behaviors but it's nice to be with other that "get it".

So to everyone :grouphug:
 
I just got off the phone with the Autism leader (I called HER, she didn't call ME). So now prepare for my VENT!

So, she says she's spent 1 hour with her in the OT room and 20 minutes observing in the classroom. She says my dd's teacher states he "sees no differences in her than the other children." Huh? What? Is this guy completely out of his mind or does he just want Sp Ed to get out of his business? He already sent me notes home saying he DOES see issues and now he reports to Autism Leader the opposite?

SO, she states (kinda between the lines) that she really doesn't want to add interventions and that she'll send me a formal letter to that effect. I guess I'll wait to see what the letter states before I put on my boxing gloves. :headache:

I told her about my dd's issues after school and she states she is probably holding it togther at school then coming home to fall apart. She states as long as she's fine in school they don't need any intervention.

Huh? So I'm supposed to bear the brunt of the meltdowns because she holds it together during school?

Man oh man, you give them an inch and the benefit of the doubt and they'll do whatever they can to avoid doing ANYTHING that causes extra work for them. Ugggh!
 
I just got off the phone with the Autism leader (I called HER, she didn't call ME). So now prepare for my VENT!

So, she says she's spent 1 hour with her in the OT room and 20 minutes observing in the classroom. She says my dd's teacher states he "sees no differences in her than the other children." Huh? What? Is this guy completely out of his mind or does he just want Sp Ed to get out of his business? He already sent me notes home saying he DOES see issues and now he reports to Autism Leader the opposite?

SO, she states (kinda between the lines) that she really doesn't want to add interventions and that she'll send me a formal letter to that effect. I guess I'll wait to see what the letter states before I put on my boxing gloves. :headache:

I told her about my dd's issues after school and she states she is probably holding it togther at school then coming home to fall apart. She states as long as she's fine in school they don't need any intervention.

Huh? So I'm supposed to bear the brunt of the meltdowns because she holds it together during school?

Man oh man, you give them an inch and the benefit of the doubt and they'll do whatever they can to avoid doing ANYTHING that causes extra work for them. Ugggh!

We have the same issue with DS. He rarely has tantrums at school but he comes home and lets loose. We think it's the same thing. He's so good all day he basically bursts when he gets home. We found the same thing at chess camp last week.

But I do think there is an issue if she doesn't want to go to school. Are there underlying problems or is it just the end of the day need to let it out stuff? Since you are getting conflicting stories, talk to the teacher and find out his side. At some point you may need to get "everyone in the room" at the same time so everyone hears the same thing.

And what is the autism specialist's definition of fine?

We anticipate 2 battles this year. One being academics and getting him pushed up to 2nd and 3rd grade for reading and math. The other being social interaction with the other kids and how they react to him. "Kids being kids" is not acceptable and quite frankly many of the kids at our school would benefit from learning social skills themselves.
 
Zoe also usually has at least 1 meltdown after she comes home from school. Before and after that, she replays her day, words and all, like she's performing on a stage. She acts out other kids' roles, and her own. Lots of shouting at no one, in the middle of our family room. I think they work so hard to hold it together at school, they know home is a "safe" place to have a tantrum. No peers or teachers watching them.

FWIW, it's a weird sort of a compliment to you, and the rest of us parents here. We make them feel safe enough to do something socially inappropriate, like tantrumming.
 
Well a new school year starts and surprise, a new ED, Speech pathologist (while DS had a nice one last year she did not have training to do social skills curriculum which had to be passed to the psychologist) and a new SPED ELA pull out teacher (and I mean not new just new to DS but new to the school). In addition he has a new art teacher (can you say lets start over on briefing about sensory issues) and a new (for DS) general ed teacher in his inclusion classroom. On the good side the SPED teacher in his classroom worked with DS some last year and was starting to read up on Apsergers. And on the great side DS have his wonderful Para back for another year. At least I was able to get a “sit down” with most of the IEP team next week to see what “holes” in training and experience we have to work around and cure.

I just so look forward to the beginning of a new school year.

GraceLuvsWDW,

This “release” at home will continue at this level until your daughter is receiving an appropriate education with the myriad of supports, modifications and accommodations that is required for this.

The idea that the school would expect that your daughter at her current skill level could receive the award before the whole school is a good indicator that they do not have a clue about Aspergers.

“My dd is saying the other kids make fun of her and although the teacher stops it they continue to start this everyday. They make fun of her chewy necklace so I talked to her about whether she wants to just ignore the kids or wean off the necklace.”

This is the clearest example of bullying that I have heard in a long time in kindergarten. The fact the teachers have allowed it on multiple days makes them complicit in it. There is no reason she cannot have her sensory need met and not be bullied. I would be sitting on the principal’s desk tomorrow morning and file a formal bullying complaint.

This is going to be an aspie answer about the birthday party so read at your own risk. What was the reasoning behind taking your daughter to a birthday party? Did she indicate an overwhelming desire to go? You know any sensory issues are likely to be intense and she does not yet have the social skill sets to deal with the social situation. Every social event has a risk/reward analysis and I cannot imagine that the ratio was anything but high. Let go of what you think NT children should be doing and focus on minimizing the damage to your daughter while focusing on creating an environment where she can learn the skill sets that she needs. Again apologies, but some things need to be said directly.

As for the Autism leader, it sound like she does not have a clue about Apergers and she is looking for typical classic autism behaviors. The amount of time she had is certainly nowhere near enough to do a full sensory, EF and social audit of your daughter. Insist that they move forward with the full IDEA evaluation and make it clear that you will be requesting a second opinion evolution paid for by the school if theirs not complete and competent. Do they have the medical evaluation and diagnosis and recommendations yet, if so her “opinion” shows compete incompetence and no understanding of how aspersers manifests in females.

“I told her about my dd's issues after school and she states she is probably holding it together at school then coming home to fall apart. She states as long as she's fine in school they don't need any intervention.”

Another quote that shows gross incompetence, If she needs expend so much exceptional energy at school to “hold it together” and the melt down afterwards is the primary indictor that her needs are not being met and that she needs additional supports.

There is always decompression after school but full-blown meltdowns (or anything close to that) is a certain indication that the school is not meeting you daughter’s needs.

bookwormde
 
Bookwormde, you've hit the nail on the head: They don't understand how Asperger's manifests in girls. And it's not totally that, except for the fact that it is more appropriate for girls to come off excessively shy. You guys also bring light to the fact that she IS holding it together at school because she doesn't feel safe enough there to vent. Negative enforcement even to these children will suppress the off behavior but it only is suppressed for a period of time and then the explosion occurs. I just NEED to convey to them that pressuring her in these ways and not allowing for modifications is doing nothing but make her sad, feel unsafe, and misunderstood. All the traits you read of adult Aspies that make them have continuing problems. I've been doing better at home, encouraging her fascination in cars and maps, and allowing her to explore these topics of interest as much as she wants. I haven't been forbidding the scripting or acting out of her feelings because I know she's communicating with me in her special way. But they want to put that round peg into the square hole!

I'm sick of putting up with the "nonbelievers"!!!!
The ones who think it's your fault!
If she only does it at home then it's something YOU'RE doing!
She doesn't NEED to chew, it's just a bad habit!
If you just MAKE her do these things and behave this way she'll do them and behave properly in the future!

So much of my problems stem from my not knowing exactly what's going on so much of the time and therefore, I have trouble knowing which battles to fight.
How do they stop children from thinking chewing on a tube around your neck is silly?
How do you stop people from thinking a 6 year old in a stroller is wrong? (oh no not this hot DIS topic!:lmao:)
How do you get people to understand that when she doesn't answer you she's not trying to be RUDE?

Do I cut out birthday parties now? I've cut out everything. Do I just plan to drop a present by with a little one on one time with the birthday child? My dd WANTS to go to the parties. But she also WANTS to drink sweet tea, which makes her act crazy and feel bad later.

The school does have the complete 20 page Neuro Psych report. 14 separate tests were administered by that Dr and the results were confirmed by 2 other Drs she associates with. The OT was not surprised at all.

I've been videotaping my dd the past 3 days to have a video diary of her home behaviors. Worse comes to worse, I'll show them to the school district.

People think we just want exceptions to the rules.
I do not WANT to be an exception!
I want some ^&#&%$#%# normalcy in my life.
I need help from these people to get some normalcy.
In order to attain some "normalcy" some exceptions must be made.

I need to get my big girl panties on and go to battle for my dd. :lmao:
I want her to be able to grow up and say my mama understood me.
My mama helped me. My mama let me be the best I could be!

Good luck to all of you with kids starting school soon. It's positively the most difficult time for anyone with social, anxiety, or sensory issues.
:grouphug:
 
Oh, ladies, I feel your pain with the afternoon meltdowns!! My dd always did the same thing, until she was in high school and she finally started expressing herself (a little bit) about what was bothering her, things she really didn't want to do at school, etc. Her teachers thought they were seeing BEHAVIOR ISSUES......duh, no, she's finally beginning to COMMUNICATE to you how she really feels about things - this is a great achievement! I (secretly!) jumped up and down one day when she talked back to her teacher!!! :rotfl: Teachers would always say "Oh Sally is soooo pleasant, such a pleasure to have in class, so well-behaved!" and I would think "If you ONLY KNEW that she is a complete TYRANT in the evenings!

I'm going to throw out something that may be flame-inducing, but this is just my family's personal experience. We have dealt with serious anxiety issues from the time my dd was about 9 or 10. We did therapy for several years before finally deciding to try meds; the combination of continuing therapy and meds really helped her make great progress. I feel that the meds help cut down on the physical response that anxiety is inducing in the body and allow the child to learn (with support) new coping behaviors. Over the years, we've used them from time to time as a TOOL to help in the anxiety battle.

I will say that I have friends and acquaintances who just throw pills at their kid every day and expect miracles, but it doesn't work that way - the meds are just a part of the puzzle, but they can be a very positive part. I suggest to any parent whose child is dealing with significant anxiety issues to consider it, with the input of your pediatrician, psychologist/psychiatrist, and other support professionals (that's another thing that is critical - you need a medical team that works well together.)

OK, I hope there are no flames, but I know this is a controversial topic. Some parents oppose meds on principle, but there are times when I don't know how we would have survived without them!
 
Libbyt

I do not think you will get any flames. Flames go to those who use meds as a “solution” or those who would not use them under any circumstances even if their child is being injured by the manifestation.

Meds are a tool, and should be used as such, with the understanding that with the benefits come some serious downsides such as short and long term potentially life threatening side effects, and the potential to “cover up” core issues that need to be addressed to allow the person to develop as full a set of life long skills as possible. As long as from day 1 of starting meds the goal is to end the dependence on them and all practical steps are being done to develop skills and accommodations to reduce or underlying cause for the need for the meds and attempts to “ramp down” are tried regularly then if meds are a bridge to other progress then they are completely appropriate.

GraceLuvsWDW

It takes time to become a “professional” Aspergers parent, and yes it is a full time job. You are just at the beginning so do not beat yourself up about it. Social events with your child will never be the “simple things” that they are for NT parents, for us each one takes analysis, a plan, and escape route and good communication with your child (though with repetition and increased skills they become much easier to the point where you sometimes wonder why you do all the preparation). With the intellectual capabilities of your daughter, as you gain knowledge and understanding about Aspergers sharing appropriate parts of it with you daughter is important so you may communicate effectively and so she can understand and analyze what she is feeling and make “informed decisions” about her environment (not understanding and being able to have a level of control is where much of the anxiety comes from). I would suggest starting with her sensory variations; always remember to focus as much on the positives of being Aspergers as the difficulties when having these discussions.

As for “narrow minded” people who will never “get it” and do not want to since it threatens their “world” unless you have endless energy it is best to just avoid them as much as possible, they are just not worth the time and energy.

bookwormde
 
Grace, I vote for keeping the birthday parties!! My take on it is this: I try to gently push the envelope with Zoe often, but always have an exit strategy!!

Zoe goes to birthday parties too. Earlier this summer, we went to one at a putt putt golf course. An hour into the party, she crawled under the picnic tables to play with rocks. No problem. It helped her cope with the party. Now if she were older, like your daughter, I would have taken that as our cue to leave, because other kids would have noticed.

We went to another party 2 weeks ago. This time, she played with the other kids for a while, then needed some alone time. Again, it was probably time to leave.

FWIW, when our normal, 11 yr old dd was younger, she'd occasionally have meltdowns after daycare or school too. I think we all try to hold it together better at school or work, to a lesser extent just due to social pressures. Kidis with ASD carry a heavier load than the rest of us.
 
I'm not going to flame LibbyT, I think she has a good point. The way she puts it, drugs don't make me upset. It's the parents who use them as the only tool in the box that makes me mad.

My daughter had serious meltdowns every day after school when she was 6 and 7. She's NT and behaved perfectly all day during school. At home, she was a raging fit of violence and screaming. It was like she bottled it all up and then came home and let it all out. So maybe it's a 6 year old thing, not necessarily an ASD thing?

Maybe Grace should bring in necklaces for everyone in the class or have them make Cheerios necklaces or something. (Gracie necklaces?) Kids will find the very tiniest thing to be be mean over. I'm sure the teacher, if he's a smart man, can find a teambuilding exercise that will help everyone involved learn tolerance and grow. (That's exactly how I'd say it to whomever I talk about it).

As for birthday parties, we've never had a huge blowout for DS's birthday. So his 7th is coming up next week and he wants a big party with a ton of kids. He wants theme to be music. This morning he said the theme should be "classical music" and he wants the orchestra to play at his party. Too bad I'm not a billionaire and this isn't 1809. "Cause that's a perfect theme about two centuries ago.:rotfl2:

I was thinking of making cheap "instruments" the kids could play. Any thoughts? I am revising theme of party to "Let's make some noise!"
 
DIs Dreamin Mom, maybe the guests could make the instruments? Like an arts n crafts type activity. Sure puts the usual make your own t-shirt, or tote bag to shame!!!:rotfl:
 
This morning he said the theme should be "classical music" and he wants the orchestra to play at his party. Too bad I'm not a billionaire and this isn't 1809.
Don't know how much they charge, but I know that quartets from our high school orchestra hire out for gigs. You could call your local high school and inquire!?!
 
Don't know how much they charge, but I know that quartets from our high school orchestra hire out for gigs. You could call your local high school and inquire!?!

If there's an orchestra in your area, they may have a community outreach or educational component that might do a program for the party - like a museum or science center would do! As far as making instruments, check out Family Fun magazine online (it's a Disney company I think) - they always have great party activity ideas!
 
Excellent brainstorming. Thanks everyone! I think we'll have a very loud party, for sure...I was thinking of trying to let everyone make their own drums or something annoying like that. Will look into actual musicians...
 
What I have to do sometimes is speak for DS, in those situations, but do it in a way that would provide him a script for later. He's been lucky thus far, in that the kids know that in spite of the flapping, he's smart, so it kind of compensates enough. And maybe it helps that he has a big brother. ;) A really tall big brother.

I have also found that kids, even young ones, will flock to each other and form the little groups. It's the elementary school version of the band geeks and the jocks. DS's friends are the kids that also have paras. That's how he met his girlfriend, you know. :lovestruc That will probably happen with your DD Grace, it's just too early in the school year for it to be established.

(speaking of, before open house I asked DS if he thought he would be in the same class as her this year, I figured he probably would because of the para thing, and he told me that she was "going to be his first wife". :confused: First wife? Yes, he has 3 lined up.)

In the meantime, I'd loan you some big girl panties but that's kinda gross so you'll have to get your own. You'll need them for the next 12 years anyway. That's what they do, nice one day and completely ignorant the next. :mad: It was sort of the same thing happened with oldest DS- he was on meds for ADHD and he would cope during the day, but when he got home between the "release" and the meds wearing off, he was totally out of control, angry, it was really bad. So he's not on them any more. The school knew he had been on meds, and it had been brought up last spring when I was getting the IEP evals in place. And I just told them NO. No more. That our home life was H-E-youknowwhat and that it wasn't worth it. I'm sure they dislike me immensely, and I don't care.

The thing that really makes me mad is that I work with adults with ADHD sometimes. Not every student, of course, but fairly regularly. A couple days ago I had a long talk with a former student, who is now in college, about DS and puberty and meds and all that stuff. The guy cracks me up (reminds me of Tweak on South Park) but he is a wealth of information. He has an iPod going in one ear all the time. Nobody cares. He tells his instructors he has ADHD and it helps him concentrate, and he leaves the volume low enough, and nobody cares. He takes notes on his laptop, which is pretty common now, nobody cares. He has fidgets for when he has to sit like during a test or something, and nobody cares. For any of those three things, to get them at an elementary level, would involve at least two meetings and at least 3 or 4 visits to the school when a teacher decides to take the thing away anyway. Why do they make it so hard? Some days you just wanna make a t-shirt that says "I am NOT another brick in the wall. Deal with it." and send your kid to school wearing it.
 












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