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PeterPan

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PeterPan last won the day on November 22 2013

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  1. Ooo, that's a fabulous idea! Yes, those would be really good and they come in all kinds. Yeah, I think I'm gonna be pretty dire with them and not play mild. The alarms will stress him and he may hurt people and be challenging to deal with. He would be safer in his cabin. We already know this happens. I'll ask his behaviorist, but that's probably what I'm going to say. With what I saw of our practice today, no one will want to be around him after it goes off, and he won't be fit to go stand or sit anywhere, even an alternate place like a restaurant.
  2. Ok, we practiced today with 3 video clips I loaded onto youtube. He was ok with the noise and worse headphones, but then he got really stressed and wasn't ready to be around people. So we'll keep working on it and calm that down. Maybe we can think up some strategies. Even when he's rationalizing it, the body's response is still pretty visceral and stressful. I may just ask them to let us be in the cabin. There's zero benefit to him being out and it's almost unsafe.
  3. I think I'll go through the program, like you say, and see if there are some things I want to do. I want to check him into the children's program at least for an hour here or there, because I think the experience will be good for him. And, like you say, maybe my mom and I pick out some things we want to do and say sorry, you're checked in while grandpa naps, haha. I think they're more likely to nap/lounge and I'm more likely to go out of my gourd and go find something. Oh that's just what my waist needs, lol. Let me finish mapping it and see. I thought the girl on the phone said you don't on this ship. That would be like absolute dealbreaker for me. Oh dear, thanks for the heads-up! I set a spending limit of $50 on his card. I figured that way if he wanted a milkshake when out with his grandparents, he could without any confusion. But you're right, just saying no to the arcade would be best. I'll go look at the drink plan. I thought they had one that included milkshakes, lol. He shouldn't have so much dairy, but he lives on soft things sometimes. It's a sensory thing for him and sometimes that's the fastest way to solve a problem is to produce ice cream. I'll scope out the machines and see. I found pics showing drink fountains on the decks, haha. I just haven't finished. I'm probably going to use some tools like that during the alarms to keep things chilled. Yup, they said they'll put us through the priority line just by asking. It's already in the file. They less time he's in long lines and crowds, the better. We're paying to park super close too. Basically we have to decrease every bit of stress. so we can get through muster and the alarms. Once we're through that, I can solve anything with hot tubs, ice cream, room service... LOL Ok, then that will be the plan. I was thinking it might be like tv and streamers, haha. I watched LoveBoat as a child and may be incurable, lol. And the room would be good enough, sure. And yes, we're on Carnival. I kept thinking how much he'd enjoy the water slides, so that's what I went with. Things we're filling up so I just had to take a stab. The boat completely sold out the next day. No regrets yet. As I've dug in, it seems fine. The things I was drawn to (BBQ and waterslides) look good and it will work out. If something else would have been BETTER, I don't know. I just figured it will work. Honestly the food in the pictures I've seen from the main dining room looks abominable, and I don't know that I'll find anything there to eat. The Indian food options sound good. But the bbq will work and the specialty restaurants look good. Oh my lands. Oh my. You are SO RIGHT. I'll have to talk with him. Yes, straws can be a huge deal here. Don't laugh, but he carries a kiddie sipper cup that he uses at home. It's just very calming to get that input. Ok, now you can laugh. He had me save a whole bunch of the sipper/pop tops that go on water bottles, and I think his plan was to change out plain caps to sipper caps. Thanks, everything you wrote was very helpful! And yes, I just finished our boarding whatever online and it lists the muster station. I'll be sure to explain it to him. Yes, he's going to be wristbanded. I think he'll be fine with it. He's worn magic bands at Disney, though he throws them when he gets angry (ugh). He's strong enough to rip kevlar. For him the noise of those alarms will be the biggest deal. He can even wet or have other things happen from the stress. I think it will be fine. It's pretty high support, with 3 adults in the group. It's not like it's just me. So high support to divide and conquer (I'll take you for ice cream while Grandma gets such and such)
  4. So, because I'm an idiot, do they sound the alarm when they do #1 (muster station gathering) AND again for #2? He's still not his best self, but I need to start practicing with him. Sigh.
  5. Just for your total trivia, the TPH2 gene converts tryptophan to 5HTP which eventually ends up melatonin and serotonin. So you might dig in and find she has a TPH2 defect. Pretty easy fix. And your big flag on that would be comorbid depression, anxiety, a tendency toward anything indicating low serotonin as well. The SNP for the TPH2 will be in the raw data from just the cheapest testing by 23andme.com
  6. Don't they say the kids grow when they sleep? That would be pretty heavy growth time for a boy, whereas girls by that age are slowing down.
  7. Since op hasn't returned, we're talking to ourselves. The humming sounds like a stim. Pretty common, something my ds does, many kids with ASD do. And as for "relaxing" well he could do interoception work using Kelly Mahler's new curriculum https://www.kelly-mahler.com/product/the-interoception-curriculum-bundle/ As he works through it, he'll actually define physically what helps him feel certain ways so he can make those choices. The op is not incorrect to suspect the dc has an interoception deficit as part of the problem, sure.
  8. They rang it TWICE?? Oh dear. Well I haven't told ds yet, but I think I'm going to do some dessensitizing and training on it. I was realizing I can probably also bring in some strong sensory supports, like getting him a milkshake before the time (so he's sucking on a straw), etc. But my theory is basically to blare a recording of the alarm crazy loud every day till our trip so by the time it happens there it's just another instance, lol. We'll see if that works. And I'll give him treats so it's paired with being ok and calm. And yes, we have different kinds of headphones. We'll have to practice and make a plan. At least we know it's coming and can work on it. Ooo, that's a good plan, because it's multi-purpose! Oops, I'm a goofball! Hadn't even thought about myself, lol. I didn't realize there'd be such a range. Our paperwork says who to ask when we get there. Oh wow, I had totally forgotten! You're right, that's why I always carry my Vera Bradley mailbag purse, because it's magical and can hold tablets, water bottles, all kinds of things, lol. Maybe I should just carry a cute new one and not even sweat it. What are the down times? I haven't looked at the entertainment options on the ship, so I have no clue what they do. That will be my next thing to check out I guess. Then I can know if we're doing anything they do in the evening or doing our own thing. I can't fathom us doing any of their entertainment, but I could be wrong. They had some kind of Hasboro game show I thought was promising, but I usually watch youtube videos of things first to be sure. Well thanks for so many good tips!!!
  9. Just as a total rabbit trail, I came across the theory years ago from the neurofeedback sites that (and I apologize for my un-techy terms here) there are sleepy waves and wakey waves and that an ADHD profile should have more of the sleepy waves in the daytime (beta, gamma, I forget), making the person ADHD, and EVEN MORE at night, when those levels are supposed to increase. So the theory then is how to increase the wakey waves, decrease the sleepy waves. And that's why the very ADHD person would then sleep SO unusually heavily, that it's basically an indication of extreme ADHD. At least that's the theory. My dd seemed to fit that pattern. When she started stimulant meds for the ADHD, she found she wasn't falling into such a deep sleep, so she rouses better. She used to sleep about 13 hours a night AND need 1-2 hours to become human. With the meds, she rouses better and is more functional. The meds also help them go to sleep better at night by helping their brains wind down and not be revving from the ADHD. So anyways, ADHD meds can improve it. Not saying it's everything, but it's worth looking into. Also, the flipside of that theory was that a more anxiety-driven presentation would be high wakey waves, low sleepy waves.
  10. I already called and got him in the system, marked as having disabilities. I'm gonna press hard on that one because that alarm they sound, if it's like the video, is going to be very distressing. Is it quieter inside? Probably not, lol. I'll ask. That will upset him even more than the waiting. I should probably just give him Calm Child to get him on the ship and through the muster. If embarkation ends at 3, you're saying the muster will be shortly after that. So I can give him a dose at like 11am and he'll be more cool. Can you imagine if you were going down a slide when that went off? ROFL Don't know if you'd pee or scream or what. That would be CRAZY, lol. But that's the stuff I have to think through, where he'll be, how to keep it calm. You know, I need to contact autism on the seas. I'm not doing the cruise through them but they had info. Now I have a specific question they could help with. Surely they have things they do, because freaking out over the horns/alarms will be a known gig. His psychologist knew it was going to happen. That means they'll have strategies. I'll write them. Maybe they have a FB group? I'll go see.
  11. Ooo, that would be good enough! Just enough to get out and receive some texts.
  12. Yeah, that explains why people were saying to take back-ups, lol. And they break and get lost, so very wise! I thought about the internet, but I think I'm not going to. It seems like people are really dissatisfied with the speeds. I have medications now for antihistamine/anxiety to give him, got that scrip. The main bummer is needing to be able to talk to the behaviorist to problem solve. Some trips we need that and some we're fine. If I knew my phone would work in some of the ports, I probably wouldn't need more than that. I looked at some maps of coverage but I still don't get how it works, like where it will be roaming and where not and whether roaming is dreadfully expensive if it's just some texting.
  13. Ok, this is still eating at me. Ds has autism and I *have* to plan things ahead. Before I go I'll have the whole ship memorized. I scope out every menu so I know where he can eat and what alternatives are, depending on how he's rolling. I have to plan out everything ahead so my energy is focused on him and dealing with his needs in the moment. I can't be in my own learning curve problem solving AND solve his problems. And he will have problems because it's a new situation. The more cool I am, with game plans for everything, the more cool he'll be. And the more information I have, the more flexible I can be with problem solving, which sets him at ease. What I can't have is him freaking out because food isn't working or water isn't there or he feels lost or whatever. So yeah, I'm gonna scope out every single thing, down to the jackets and socks. I'll have enough challenge just to deal with what I CAN'T control and figure out and predict. And btw, next thing, where are great QUIET but festive places to go for embarkation? He says he wants to stay in his room the whole trip. He'll come out, but that's just his reality that it's easier to be in the room than out among people. I saw some pictures or video of an embarkation party on the deck and I doubt we want to be there. But out, somewhere, like a side deck might be nice. Do they do streamers or is that only on tv? LOL I have no clue what happens. I know the lady put our cabin on the left side of the ship, saying we'd see things better when we pull into ports. So maybe the walking deck on the left side? I know that's not the right term, lol. Or maybe just hit the hot tubs and not worry about it? My plan once onboard was to get bbq at Guy's and do the big water slides. I think we board at 1:00 and they pull out at 3pm. That doesn't really make sense. Do they shut the slides down when the ship pulls out? Surely not? Like if we're playing and they pull out, we just keep playing? or paper streamers fly and something happens?
  14. It looks like they provide extra blankets, so score on that too. Normally I've had to take all the blankets for ds too, because they get wet, sigh. So this is actually pretty slick if the poor steward is going to take care of the bed for me and all I have to do is plunk a bedpad on, haha. I'm going to try to hit Dollar Tree and Walmart to see if they have some of these things. Really though, I think you're right that whatever I don't get right, they'll be happy to sell us on the ship, haha. And the ped gave us the scrip for the stronger anti-histamine, so I have that if we have problems. And not having to take tons of bedding, that's HUGE. I'm usually like a sultan with this entourage of suitcases because of all his bedding, lol. What's the female of sultan, a sultana? haha.
  15. Thank you, thank you, lol. I will try! That's probably why I need a vacation, so I can get back to my calm, relaxed self, lol.
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