What should I include when discussing the DAS?

[BethCPTSD]

So, I know the basics of how the DAS works. I've been on the board awhile and read lots of information and discussions about it.

But I'm very nervous about talking to someone in GR about my needs, because I'm very sensitive to being cut off or feeling like the person is dismissing me.

Here are some of the reasons I need to wait outside of the lines:

I have POTS, and am temperature intolerant, so even in my power chair, the heat will cause my heart rate to soar and I can have severe cardiac, respiratory and neurological symptoms, including passing out.

I also have several severe psychiatric disorders and unnecessary stress/crowds (yes, I said unnecessary, because obviously, I know I can't avoid it completely) can increase symptoms such as panic, hallucinations, terror and spontaneous vomiting.

Um....I don't know. I don't know what else. I mean, should I even mention the POTS stuff? Sometimes I hear people say not to mention temperature intolerance because most lines are in the shade -- but at the same time if ANY are not, I could have serious consequences.

Should I write it out? I"m very nervous that they're not going to listen to all of what I say and deny me before I'm done explaining. What should I start with?

Thank you very much,

Beth

 

[BethCPTSD]

Or maybe I should write down those two sentences and just present that??? Will they read it, or will they automatically tell me no because they might think it's a doctor's note? I'm sorry, I sometimes cannot speak up for myself very well.

 

[BethCPTSD]

I also have sensory integration problems due to my trauma disorders and that can quickly overwhelm me (causing some of the things mentioned above.)

 

[Mrsjvb]

the only thing that is relevant is explaining why you cannot wait in a regular line. it is fine to write it down if you have trouble with verbal communication, but be prepared to be asked for clarification

the temperature issue will be a bigger problem OUTSIDE of the lines. a DAS cannot help there.

 

[gap2368]

Yes most lines are in side or undercover and going from ride to ride is where I have my most problems with the het.

You need to think about being in line and what happens to you, The same person can have the same DX but have 2 very different things happen to them in line, so this will be your job. and then think about why waiting out side the line will help you, This is what you need to focus on when talking to the CM.

for my self I would not even say you are looking for a DAS card I would just join and say what your problem are with waiting in line and ask them what you should do. They know Disney best and you know your disabilities best. If what they suggest dose not work fro you. then go back in and talk to them again and let them know that what they suggested is not working and let them know why. ( I had to do this and I still do this sometimes)

Reading your post it sounds like you will have a lot of problems at Disney and you are going to have to understand ( and you may already) that you will have problems you will struggle and having a DAS card will not make things all better. I would defffently think about what to do if you start to have problems with your CPTSD, if you start to have problems with you r POTS or any other other problems you have do over what to do with the people you are going down incase you are unable to do anything your self. (This is what I do with my friend so she now what to do if XYZ happens to me and I know aha to do if ABC happens to here, as we both have different disabiities )

 

[BethCPTSD]

HI guys. It's late and i'm having a difficult night, so I just wanted to add a thought to my original post. (Although your responses have already been very helpful, thank you.) I think what I'm really concerned about is that when I approach GR, I'm going to be in a very childlike state where I'm super emotional or unable to communicate. I guess that's where my husband or written note comes into play, right? Those are both great ideas. I'm struggling with a lot of internal lack of stability right now and overcome by aspects of myself who are more like little children 4 or 5. (I have dissociative identity disorder if you haven't read my other posts.) My doc is also out of town this week and won't be back till I'm at WDW during my second week! We're just really struggling and feeling so anxious about all the what-ifs in our emotional states and behaviors. Thanks for listening,

 

[gap2368]

HI guys. It's late and i'm having a difficult night, so I just wanted to add a thought to my original post. (Although your responses have already been very helpful, thank you.) I think what I'm really concerned about is that when I approach GR, I'm going to be in a very childlike state where I'm super emotional or unable to communicate. I guess that's where my husband or written note comes into play, right? Those are both great ideas. I'm struggling with a lot of internal lack of stability right now and overcome by aspects of myself who are more like little children 4 or 5. (I have dissociative identity disorder if you haven't read my other posts.) My doc is also out of town this week and won't be back till I'm at WDW during my second week! We're just really struggling and feeling so anxious about all the what-ifs in our emotional states and behaviors. Thanks for listening,

You will be fine, there will be bumps in the road while you are at Disney you can have your DH tell for you if you can not or you can write things down.

 

[mamabunny]

Beth:

Take a deep breath - I know you are probably feeling super overwhelmed right now, but you are doing *awesome*!

You are using all the tools you have (searching The DIS, and talking about strategies, and pre-planning) and I have a feeling you are more prepared than you think you are!

If you are like me, it helps me sometimes to have everything written down and handy. When I feel prepared, my stress level is just naturally lower, and if I know I have all of my duckies in a row (to the best of my ability LOL) then I have done all I can to get ready, and - this is important - I let my relax about it, as much as I can.

Here's a couple more ideas for you - I don't want to overwhelm you, but I can sense your level of concern, so I'm letting you know about these tools.

First, there is a great App for your smartphone (I think our very own @gap2368 introduced us to it) called "Emergency Chat".

If you get overwhelmed and can't talk - but could still text - it allows you to type a message on your phone and then hand it to another person who can then type back, or speak verbally to you. There is a splash screen that you can customize to let people know that you are overwhelmed and can't speak right now.

The other idea is also an App - it's called Doctor on Demand. And right now, until May 31, they are giving everyone one free visit, so you could at least talk to a medical professional - at no additional cost to you - prior to your trip. Details are here. (They accept a lot of insurance plans, BTW.)

We have used Doctor on Demand a LOT at our house - and on vacation! I know for a fact that they have Florida-licensed practitioners, so if you needed to, you could even start a session from anywhere you have service at WDW!

You have so many great ideas and suggestions here in this thread; I hope that you find the ones that work best for you, and have the most lovely trip possible!

 

[BethCPTSD]

((mamabunny)) thank you so much!!
I really appreciate your message, it was very helpful and I especially love the suggestion of emergency chat! I don't know if I said this before but I've dealt with selective mutism on and off since very little and this app could be awesome! I'm trying to download it right now

I had one other maybe silly question....I was talking today to my fill-in therapist and saying I keep thinking maybe a little token object to have in my hand would help to ground me and she goes, "they MUST sell fidgets/fidget spinners at Disney!" Does anyone know for sure? Mamabunny, do you know if they sell these at the parks or resorts???

Thank you again!
Beth

 

[gap2368]

((mamabunny)) thank you so much!!
I really appreciate your message, it was very helpful and I especially love the suggestion of emergency chat! I don't know if I said this before but I've dealt with selective mutism on and off since very little and this app could be awesome! I'm trying to download it right now

I had one other maybe silly question....I was talking today to my fill-in therapist and saying I keep thinking maybe a little token object to have in my hand would help to ground me and she goes, "they MUST sell fidgets/fidget spinners at Disney!" Does anyone know for sure? Mamabunny, do you know if they sell these at the parks or resorts???

Thank you again!
Beth

Here now and I have never seen them but they are cheep and eBay will deliver to your resort

 

[BethCPTSD]

Thanks, Gap! I hope you're having a good time!

By the way everyone, I tried Mamabunny's suggestion of the "Emergency Chat" app? It's amazing! It has one preset setting for non-verbal folks with an ASD, but you can set your own -- which is perfect for anyone with a speech issue! I typed out and saved my entire, "this is why I need to wait outside the lines" speel on there which will make it tons easier!

Thank you so much!

 

[BethCPTSD]

Hey Gap,
Speaking of things being delivered to hotels -- again, I'm staying at Disney Springs at the Doubletree, not an official Disney resort. That said, I think I will have to buy another small bag of dog food for Harrison while I"m there -- do you think I can have that delivered to my (non-Disney) hotel too? Just trying to figure that part out in case, because we're not renting a car. Thanks ((hugs))

 

[mamabunny]

Beth - We didn't see any fidget spinners when we were there in late April/early May, and since our Gap is there now, we have an even more definitive answer!

If you are planning on using Garden Grocers, or a similar local grocery delivery service, they will probably be able to deliver no problem - having said that, we have not stayed off site since 1972 (literally) so if I were in your shoes, I would call them really quickly, and just ask!

If you are having things shipped in to your hotel, then the procedure is usually about the same regardless of where you stay - you address the shipment to the hotel, ℅ BethCPTSD (GUEST ARRIVING XX/XX/2017) and then the address of the hotel (be sure to include zip code!) You can always call the hotel directly to ask them if they have any other special procedure in place, but typically that's about it!

I can't remember - if you are flying, you will possibly find fidget spinners in airport gift shops and newsstands. If you are driving, then gas stations and truck stops might have them. I know that locally some of our drug stores (like Walgreens & CVS) have had them as well.

You're going to have a great trip! Just remember this: No matter *what* happens, you will be at Disney World - our Happy Place! So even a miserable day at Disney World is almost always going to beat a miserable day anywhere else, right? And if you do happen to have a little problem, just remember this: If that's the *worst* thing that happens to you on that day... you are *still* at Disney World - and you can go on, and have more fun!!!

(((hugs))) MB

 

[kaytieeldr]

First, there is a great App for your smartphone (I think our very own @gap2368 introduced us to it) called "Emergency Chat".

First, there is a great App for your smartphone (I think our very own @gap2368 introduced us to it) called "Emergency Chat".

Missed the original mention, but thank you, gap2368 and mamabunny!!!

Hey Gap,
Speaking of things being delivered to hotels -- again, I'm staying at Disney Springs at the Doubletree, not an official Disney resort. That said, I think I will have to buy another small bag of dog food for Harrison while I"m there -- do you think I can have that delivered to my (non-Disney) hotel too? Just trying to figure that part out in case, because we're not renting a car. Thanks ((hugs))

I know gap2368 indicated ebay, but Amazon would probably be even better.

 

[SueM in MN]

Missed the original mention, but thank you, gap2368 and mamabunny!!!

I know gap2368 indicated ebay, but Amazon would probably be even better.

I agree that Amazon would be better and faster.

There are also fidget apps for smartphones. You can just search for "spinners". There are also other fidget type games you can download. I've seen bubbles you can pop, snowflakes and even bubble wrap for the phone.

 

[LadyD]

((mamabunny)) thank you so much!!
I really appreciate your message, it was very helpful and I especially love the suggestion of emergency chat! I don't know if I said this before but I've dealt with selective mutism on and off since very little and this app could be awesome! I'm trying to download it right now

I had one other maybe silly question....I was talking today to my fill-in therapist and saying I keep thinking maybe a little token object to have in my hand would help to ground me and she goes, "they MUST sell fidgets/fidget spinners at Disney!" Does anyone know for sure? Mamabunny, do you know if they sell these at the parks or resorts???

Thank you again!
Beth

After a terrible experience at DL looking to get DAS, I was extremely anxious and overwhelmed about approaching guest relations at WDW, but everything actually went really well on our last trip. The woman was super nice and not mean at all (unlike the DL lady). I have a Duffy bear I bring with me to the parks normally, and holding/squishing him when I start to feel overwhelmed is super helpful for me. I would totally bring something that will help calm you if you can.

 

[BethCPTSD]

Hi guys...got my DAS today. If written it out, but she only "needed" the first paragraph which said they I have at least 10 chronic physical and psychiatric illnesses. The rest of what I wrote explained what kinds of symptoms I could have by waiting in lines, but she said she didn't any more info. Of course that might just be because of the cast member herself...maybe with someone else I would have had a different experience??

Thank you all as always for all your help!

 

[AmySabato]

HI guys. It's late and i'm having a difficult night, so I just wanted to add a thought to my original post. (Although your responses have already been very helpful, thank you.) I think what I'm really concerned about is that when I approach GR, I'm going to be in a very childlike state where I'm super emotional or unable to communicate. I guess that's where my husband or written note comes into play, right? Those are both great ideas. I'm struggling with a lot of internal lack of stability right now and overcome by aspects of myself who are more like little children 4 or 5. (I have dissociative identity disorder if you haven't read my other posts.) My doc is also out of town this week and won't be back till I'm at WDW during my second week! We're just really struggling and feeling so anxious about all the what-ifs in our emotional states and behaviors. Thanks for listening,

1) I would have the phone # of a doctor covering for your doc, if it would be necessary.
The anxiety and emotions you are feeling are sure to get worse from the excitement of going to Disney and the anticipation of having to explain all this. I personally would leave it to your husband AND a written note (doctor's note) to present to whomever needs to read it.

I have to tell you that I tremendously admire you and those with additional disabilities that would otherwise cause them to not go to Disney. I admire those that do not allow the fear and anxiety to interfere with living their life. Hats off to you all! You are enjoying life as best you can and I applaud that.

 

[BethCPTSD]

Thank you so much, Amy!!! That means a lot to me!!! Our trip is going well!

 

[KristyBox]

I'm so glad to hear it's going well. My sister and nephew have POTS and I wouldn't even consider for a second that they could stand in lines. They would pass out. They also can't sit in a wheelchair all day (one of the worse positions for POTS). They always get the DAS.