Tips for a teen whose sensory issues have been more disregulated lately

We are staying at Pop-not terribly close to anything but a smaller resort with a dedicated bus and newly refurbished rooms.

The dessert party is a splurge but it doesn't hurt too bad. Our union has been in negotiation of our contract for over a year and they finally came to an agreement that means a back pay check for me :cool1:

Not all of pop's rooms have been refurbed yet - they were on building 10 two weeks ago, and were just starting on one wing of it. We were in the same building, in a room that hadn't been redone. Not sure how quickly they are moving - that one week we were there, they were in the same rooms the entire time.
 
Not sure how quickly they are moving

Very slowly! Only 2 buildings (8 and 9) are currently re-opened with refurbed rooms. Another (7) has been out for quite a while (maybe since May or early June) and nobody knows when it will reopen, though lots of speculation. One more (10) is closed or partially closed for refurb. I don't believe any other buildings have been started yet.

We are staying at Pop-not terribly close to anything but a smaller resort with a dedicated bus and newly refurbished rooms.

I'm sorry, but you were given some inaccurate info. As noted above, the refurbed is ongoing and most rooms are not updated yet. It has the largest number of guest rooms (2,880), and while POP doesn't share buses, everyone uses buses as there is no other mode of transportation (other than drive or taxi/uber). We like POP, so I'm not putting it down, just that your description painted a picture that isn't realistic (small and newly refurbed).

Enjoy your vacation!
 
Not all of pop's rooms have been refurbed yet - they were on building 10 two weeks ago, and were just starting on one wing of it. We were in the same building, in a room that hadn't been redone. Not sure how quickly they are moving - that one week we were there, they were in the same rooms the entire time.

Yes, I know and I know that my requests aren't guaranteed but my requests are building 8 and 9 so I am hopeful. I really am not a big fan of any of the values-particularly the rooms- but that is the room category that I can afford so I am at least trying to be hopeful that I will get the best option available. I even changed our reservation from a preferred room to a standard room (at basically the same cost) just to try to get a better chance of getting a refurbished room that way if we have to spend a little more time there because he needs breaks we can at least be a bit more comfortable.
 
Very slowly! Only 2 buildings (8 and 9) are currently re-opened with refurbed rooms. Another (7) has been out for quite a while (maybe since May or early June) and nobody knows when it will reopen, though lots of speculation. One more (10) is closed or partially closed for refurb. I don't believe any other buildings have been started yet.



I'm sorry, but you were given some inaccurate info. As noted above, the refurbed is ongoing and most rooms are not updated yet. It has the largest number of guest rooms (2,880), and while POP doesn't share buses, everyone uses buses as there is no other mode of transportation (other than drive or taxi/uber). We like POP, so I'm not putting it down, just that your description painted a picture that isn't realistic (small and newly refurbed).

Enjoy your vacation!

Oh yes just trying to be positive with what our choices are. To be honest I dont really like any of the option in our price bracket. I keep telling myself that at least least the grounds are smaller than Caribbean beach so maybe we wont have to walk to far in heat from the buses. And at least we wont have to share buses like the All Stars.

The fact is that we have waited this long to ever go to WDW because of these challenges and I started getting to the point of wondering if I might never get to go. I love Disneyland but its always been a big dream to get to visit another park and we never have because our budget is limited and all we could afford even after years of saving is a non ideal option.

So instead of never getting to go I booked the trip and told myself to just be positive with everything. In fact I originally book POFQ because it actually is smaller and nicer but as time when on and things came up I couldn't afford that resort either so my choices were Pop, The All Stars or cancel. I just couldnt bare the idea of cancelling when we were so excited about it and have saved and planned for so long. So I booked what was available and told myself to be optimistic.

Is it possible that I will be disappointed-yep but I really hope I wont be. This is a once in a lifetime trip.
 

We have been to the neurologist, thats who diagnosed his Tourettes. I was pursuing an ASD diagnosis at the time but they insisted he didnt qualify because he did have any speech delaying or significant abnormalities of speech and she said those are a must check box for an autism diagnosis. They insist that sensory processing issues are also part of ADHD as well as stimming.

I even tried to get around the lack of OT services offered by my insurance by requesting PT based on the school OT's recommendation but no luck. The schools OT provided services for retained primitive reflexes and sensory integration and the PT said that they dont provide the services that he needs that I would need to take him to an OT for those services. It has been a battle all these year and I have always thought that it wouldnt have had to be if he had the Autism dx instead of the multiple dx'x that they put together to cover all of his symptoms and difficulties.

Fwiw, while DSM4 included language criteria, DSM5 does *not*. He sounds like he would get an autism diagnosis if you went to a private clinic, as he's needing significant support. The language issues are probably also there, btw. There is more detailed testing, like the Test of Narrative Language, the Test of Problem Solving, and the Social Language Development Test, that would probably all show things on him.

Now back to your Disney question! I think you might want to be cautious about the fireworks. You've been before, but also it sounds like your ds is more dysregulated this time than he was last time. Has his *stress* been up? When things are stressing my ds, that happens. Reducing stress is a major goal for our behaviorist as we work with him. School stress can affect it.

Anyways, my ds did fine at one night of the fireworks in MK and our last night totally melted down and flipped out. You sound like you have a long day planned. You might want to go back to your resort and swim before dinner, skipping the fireworks with him entirely. Or, if it's going to be a long hard day, maybe have a plan B so that if he's having a hard time or needs to do something different you have a plan. You could go back to Main Street (farther back, instead of closer) and get an ice cream cone and watch from farther back. Go ride the monorail and see if you can see the fireworks from there. Some place quiet where he can vege, do whatever calms him.

I don't think the dessert party is a bad idea. I thought about it myself for my ds. I gave up because I realized we would have to wait in line to get in and then be trapped. Are you taking headphones? You might want to take headphones AND noise canceling earbuds. You can put the noise canceling earbuds under the headphones. Or alternately now they have things like the wireless noise canceling headphones. We have those now, but they're $$. Anyways, something like that would give him a chance to pull back in, be quiet wherever he is, and get centered again.

As far as your sensory, it sounds like you need some more help. He probably has more retained reflexes. You should not need to give him bruises to get his system called down. There's research behind using a variety of textures and temperatures to make the brain work through adjusting to the changes. So when I work on my ds, I do his feet, and I do a variety of things, rotating through them:

-light stroking with just a pen or fingernail
-firm massaging/kneading with your thumb
-ice cubes
-something abrasive like sandpaper or a boar bristle brush
-nail brush

And I'll go through that sequence 4-6 times. It can be pretty irritating to him, so he plays on the iphone while I do it. As an adult, I do other things for my own sensory. I use a steam room at the gym (very intense!), then I use a pumice stone on my feet. I also lift weights. Weight is incredibly calming to the sensory system. If he's having dyspraxia (coordination) symptoms, you can look at the book Beating Dyspraxia with a Hop, a Skip, and a Jump. He can do things like running while carrying 2-3 pound weights, using a weighted slam ball, etc.

The mindfulness would help him, but it sounds like he needs to do it with a counselor, who can teach him some techniques he feels comfortable with, rather than doing it with a CD. He would also be a candidate for TRE (Trauma Release Exercises), which you can learn to do by googling online. As he grows, he wants tools like this that he can do for himself to calm his body.

There's some new software, just out of beta and open to the general public, called Mighteor. We're using it, and it's kind of early to say. It works on mindfulness and what is called Interroception (your brain and body's self-awareness) by working on heart rate while they play games. So they'll have goals, like make your heart rate go up into the red zone and hold it there for 20 seconds, or keep your heart rate in the blue for 30 seconds, etc. The kit comes with a tablet, bluetooth heart rate monitor, and the apps already preloaded and ready to go. They also give you 90 days of parent coaching. There's also a coupon, Zones20, for $20 off. Anyways, we're doing it, and so far I think it's useful. He's realizing more quickly when he's not calm and what that feels like and how to make choices to get back to calm. There's a $$$ book on Interroception that costs $40+ that includes heart rate exercises, but this heart rate monitor and with game apps is a much better way to do it, to my mind.
 
Fwiw, while DSM4 included language criteria, DSM5 does *not*. He sounds like he would get an autism diagnosis if you , post: , went to a private clinic, as he's needing significant support. The language issues are probably also there, btw. There is more detailed testing, like the Test of Narrative Language, the Test of Problem Solving, and the Social Language Development Test, that would probably all show things on him.

His social language is the one. His initial school IEP in kindergarten included a WISC IQ test that had him in the advanced category for oral language and they still had him in speech for social language so I feel like that is telling and yet they never pursued an autism Dx for his IEP either-ok they made a lot of mistakes with his special ed case over the year so maybe that doesn't mean much. Since I have gotten so much feedback on this board about having him retested I have been wondering if I should do just that. With a different Dx maybe our insurance would have cover more services.


Now back to your Disney question! I think you might want to be cautious about the fireworks. You've been before, but also it sounds like your ds is more dysregulated this time than he was last time. Has his *stress* been up? When things are stressing my ds, that happens. Reducing stress is a major goal for our behaviorist as we work with him. School stress can affect it.

He has been under more stress. He just moved over to the high school which is a new district from the elementary and middle school district out here. This has meant that not only is he at a new school bu he also has new service providers for the first time since the third grade. He has been pretty good about it but it has stressed him. Also there has been a major shift in the family. My mom decided to take in a foster child who turned out to be...rough. He has always been very close to his grandma but now we hardly even go over there (we live down the street from them and used to be over at their house a few nights a week) because of the child's behavior.


I don't think the dessert party is a bad idea. I thought about it myself for my ds. I gave up because I realized we would have to wait in line to get in and then be trapped. Are you taking headphones? You might want to take headphones AND noise canceling earbuds. You can put the noise canceling earbuds under the headphones. Or alternately now they have things like the wireless noise canceling headphones. We have those now, but they're $$. Anyways, something like that would give him a chance to pull back in, be quiet wherever he is, and get centered again.

He has a couple of pairs of headphone that we bring. He is very particular about head phone. He has the noise canceling earbuds that have to be charged and he has a pair of Beats Studios which are huge but he loves them. He is almost a headphones collector-he has many pairs and even buys them with his own money.


I will look into the sensory techniques you mentioned. Boy he would really not like the sandpaper, nail brush or finger nail stroke but I think he could manage a couple of rounds. How long do you perform each one?


Where do you buy the Mighteor stuff?
 
His social language is the one. His initial school IEP in kindergarten included a WISC IQ test that had him in the advanced category for oral language and they still had him in speech for social language so I feel like that is telling and yet they never pursued an autism Dx for his IEP either-ok they made a lot of mistakes with his special ed case over the year so maybe that doesn't mean much. Since I have gotten so much feedback on this board about having him retested I have been wondering if I should do just that. With a different Dx maybe our insurance would have cover more services.




He has been under more stress. He just moved over to the high school which is a new district from the elementary and middle school district out here. This has meant that not only is he at a new school bu he also has new service providers for the first time since the third grade. He has been pretty good about it but it has stressed him. Also there has been a major shift in the family. My mom decided to take in a foster child who turned out to be...rough. He has always been very close to his grandma but now we hardly even go over there (we live down the street from them and used to be over at their house a few nights a week) because of the child's behavior.




He has a couple of pairs of headphone that we bring. He is very particular about head phone. He has the noise canceling earbuds that have to be charged and he has a pair of Beats Studios which are huge but he loves them. He is almost a headphones collector-he has many pairs and even buys them with his own money.


I will look into the sensory techniques you mentioned. Boy he would really not like the sandpaper, nail brush or finger nail stroke but I think he could manage a couple of rounds. How long do you perform each one?


Where do you buy the Mighteor stuff?

Ohhh if headphones are his thing, the Sony MDR-1000x are quite, quite nice. They're expensive, but they are worth every penny. The level of effective noise cancelling across the spectrum of sound is unlike any other pair I've found. We just took a cross country flight from San Diego to Orlando with a wailing infant sitting in the row across from us, and it didn't even really register except when the kid was at its most extreme (and even then it sounded like the kid was in a different room rather than 6 feet away), nor did the engine noise even though we were right behind the wings. These headphones have completely transformed my world. They are also super comfortable to wear, even with my glasses.

I didn't get my ASD diagnosis until earlier this year (just before I turned 30), largely because I was so verbal (even though I had zero social abilities). Growing up, my treatments were patchwork at best for the variety of conditions they felt fit me based on the available diagnostic criteria, but I still struggled a lot as an adult. Now that I finally have a comprehensive diagnosis that fits, I was able to find a practitioner who is helping me overcome some of the biggest areas in struggling with. However, they suspect I have an auditory processing disorder as well that they cannot test me for because there is not really a valid test developed for adults since it is generally caught in childhood and it is a bit challenging to get treatment for it. Thankfully, I am not nearly as significantly impacted by that.

Whether or not receiving the ASD diagnosis would change anything for what you're doing for your son now and the treatments he is receiving, if it is a valid diagnosis for him, it might have more benefits in the long run should he need treatment or access to specific services. Clearly you know his particular situation and needs best though. For example, the college I went to has developed a robust program to support students with ASD by pairing them up with mentors to help them navigate the social complexities of college life and transitioning into the workforce. I also have accommodations at work now that have allowed me to flourish in a way I was not before. It sucks because people are not their diagnosis, but it is often not until people hear that you have a particular diagnosis that they are willing to work with you to find or offer solutions.
 
Oh yes just trying to be positive with what our choices are. To be honest I dont really like any of the option in our price bracket. I keep telling myself that at least least the grounds are smaller than Caribbean beach so maybe we wont have to walk to far in heat from the buses. And at least we wont have to share buses like the All Stars.

The fact is that we have waited this long to ever go to WDW because of these challenges and I started getting to the point of wondering if I might never get to go. I love Disneyland but its always been a big dream to get to visit another park and we never have because our budget is limited and all we could afford even after years of saving is a non ideal option.

So instead of never getting to go I booked the trip and told myself to just be positive with everything. In fact I originally book POFQ because it actually is smaller and nicer but as time when on and things came up I couldn't afford that resort either so my choices were Pop, The All Stars or cancel. I just couldnt bare the idea of cancelling when we were so excited about it and have saved and planned for so long. So I booked what was available and told myself to be optimistic.

Is it possible that I will be disappointed-yep but I really hope I wont be. This is a once in a lifetime trip.

Most of our trips have been to WDW. There are things about each park (WDW versus DL) that make them easier or harder. DL is nice because you can walk to the hotel for breaks. But there is a lot more space at WDW, so there's less of a trapped-in-the-crowds feeling. The queue areas also feel more open and spacious, and are typically indoors and air conditioned. Epcot and AK (at least pre-Pandora) feel open and have lots of options for escaping the sensory-overwhelm. One thing my kids wished was at DL is Spaceship Earth, because they find it very relaxing.
 
Most of our trips have been to WDW. There are things about each park (WDW versus DL) that make them easier or harder. DL is nice because you can walk to the hotel for breaks. But there is a lot more space at WDW, so there's less of a trapped-in-the-crowds feeling. The queue areas also feel more open and spacious, and are typically indoors and air conditioned. Epcot and AK (at least pre-Pandora) feel open and have lots of options for escaping the sensory-overwhelm. One thing my kids wished was at DL is Spaceship Earth, because they find it very relaxing.

I think that mine will fall in love with Mission space-all that spinning will be the bee's knees for him. I'll be trying my stomach under control.

I will say that over the last few days he had been showing less signs of disregulation (less intense seeking behavior-though he has been walking around half the day with a rubber band around his head under his hat and if that thing snaps on him I told him not to be surprised), less irritability, easier to rouse from sleep, eating better, more work completion at school). I have started doing the brushing on his arms and legs, funnily enough he asked if he could wear headphone while I do it. apparently the sound of the brush is irritating for him which seems strange since he can blast music but the soft sound of the brush is somehow too much :confused3.
 
I also have a sensory kid. I get with his age, wanting to be low-key sometimes, although I agree that I wouldn't worry about appearance, teens don't always hear this advice. One subtle option in headphones would be the type used for shooting, that look like buds. You can get them at any outdoor store, and I've found they often have a higher rating for cancelling noise. It sounded like you aren't set on getting the DAS--but if it was me, I'd get it, and then hope I didn't need it. If his days go good, then just stand in the lines--but better to have it when it's needed than to have to be stressed that things aren't going well, and then have to backtrack to CS and get it. If he is seeking like mine, we got him Chewelry--it was GREAT. If you aren't familiar, it's jewelry that is designed to be chewed on--we got the XXT ones, and they last pretty well and give the resistance he needs. They really gave my son a subtle outlet when he needed it. And they come in different styles, and aren't obviously sensory items. We've also done heavy backpacks, and tight wristbands (like the workout kind).
 












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