son with PTSD

[carebearkidney]

Hi ladies and gentlemen.
I have a question about shows and rides that contain shows/theater type experiences. My son was diagnosed at the age of 2 with having medically induced PTSD due to his numerous (29) surgeries he has endured along with the stress and trauma that just naturally comes from being sick kid at the hospital. We went to Disney back in 2011 (he was 2.5) and after becoming acclimated to certain things, or taking him to a spot for him to calm down - he LOVED his time there!
However, he had difficulties with things that had shows involved. We only tried two of them, after seeing he was not doing well, we didn't push any others. The two we tried were Mickey's Phillarmagic and Ellen's Energy ride. At Mickey's we took off his glasses so it would be less "intense" but he still screamed. At Ellen's ride, we didn't even ride - the jeopardy game had already done him in.
I never know when a trigger will set him off. The bubbles set him off for the first as they would blow bubbles in the hemo unit when he was there for 13 months. He equates ties and the color white to the hospital (hello Bill Nye the science guy and the white lab coat!) When he has an "episode" it's not JUST a tantrum...it's screaming, kicking, pulling his hair out, vomiting and just completely beside himself until he is able to calm himself down, knowing that whatever he perceived as "danger" is not dangerous. He's has banged his head so hard on my car window when we have pulled into the hospital parking deck, that he has gone into labs with a bleeding head! The child psychologist we see at the hospital says he finds "comfort" in pain, as that's what he has known most of his life.
Basically my question is that we are hoping to go back to Disney for our MAW trip early next year and would like to try a couple of "shows" again. Can I ask for a seat (like at Muppets or Mickey) near the aisle and let the CM know he might have an episode and I might need to make a quick escape? Would they even let us leave at that point? it's not 'technically" a ride right? We have been trying desensitization over the past year and he is getting SO much better...but again, I never know when a trigger will trigger! He loves bubbles now, but seeing a photo of a mommy in a hospital bed with her new baby sends him into a frantic hell. He will scream "no ride the bed, no ride the bed"
Has anyone else had children with PTSD? How do you handle things like this? I want him to enjoy his trip and experience things I know he would love, but am afraid of a trigger. I don't want to ruin others' experiences let alone my son...who the trip is ultimately for anyway. Thanks for any thoughts or ideas!

 

[Blurrysmom]

I don't have a PTSD child, but I just wanted to send you hugs and good vibes. I also have a 4-year-old son, and I am sorry your son has had such a hard road in his short life. I hope he is OK. And God bless you and your husband. You must be unbelievably resiliant people!

Anyway, as far as Disney goes, my son has some mild sensory issues, and people have suggested that I show him rides and shows on YouTube. You might try that, very close to when you take your trip. I understand that could trigger him, but better in your living room than at Disney, I'm guessing? If you could avoid those triggers, you might have a whole trip that's incident-free, and I'm guessing that would be a true vacation for all of you.

 

[jlcw14]

Bless his little heart!

I have requested a seat near the exits on several occasions and have never had a problem. Best of luck! Sounds like the desensitization is helping.

 

[carebearkidney]

Thank you Blurrysmom! We are definite lovers and users of youtube. We watched that before we left on our trip to see how he would do on the "indoor/dark" rides. We watch them still just to relive the magic - his favorite this week is Winnie the Pooh.
I was just curious IF we decided to try a show like Mickey's Philharmagic, could we request to sit on the end of an aisle and/or would they let us leave if he got upset? Since he "seems" to be over his bubble issue - I definitely wanted to try that one again, but won't even attempt if someone thinks we won't be able to "escape" if need be.

 

[LilyWDW]

I think that would be fine for most shows (if not all of them).

I would stay away from things like Ellen's though because you can not just up and leave. If you try to with Ellen's, then they have to shut the whole ride down and evacuate it. Carousel of Progress is another one that would have that issue as well.

 

[carebearkidney]

Bless his little heart!

I have requested a seat near the exits on several occasions and have never had a problem. Best of luck! Sounds like the desensitization is helping.

Thank you!
And desensitization is helping him a whole bunch...just have to know how far to push and when to hold back you know. We've even had "practice" runs to the doctor, just to say hi and NO ouchies that day. He loves the no ouchie visits, luckily we have had a bunch of those due to some consults that have been needed. I also take him with me and his big brother when we go to the doctor. He still gets upset, but doesn't get frantic or try to hurt himself any more. Thank you God! But this past spring, he had a bunch of surgeries (4 of them) all within two weeks apart...needless to say, that was NOT a fun time for anyone around here...especially him! It's hard to help him fight his demons, when his "demons" are people that are truly trying to help him.

 

[carebearkidney]

I think that would be fine for most shows (if not all of them).

I would stay away from things like Ellen's though because you can not just up and leave. If you try to with Ellen's, then they have to shut the whole ride down and evacuate it. Carousel of Progress is another one that would have that issue as well.

Staying away from Ellen and Bill Nye - no lab coats for us until he knows the difference in doctor and tv science dude!

 

[of2dbeach]

I cant say I know how you are feeling etc but my son is Autistic and pretty much does the all out tantrum throwns himself down and has self injury behaviors. He is 19 and still does them but they are limited TG. We started using Valium when we go somewhere that we know will freak him out. Like Elevators he has gotten alot better and as long as we dont go up but a few floors he seems ok with it plus he likes to push the buttons so that helps and it gives him a sence of control. He tells his little sisters to "hold on" and he pushes the button for us. I think if you exsplain his situation to a cast member before you go in and ask for the "chicken exit" you will be ok. Certain things freak Mike out that you wouldnt think would be an issue. Maybe he can work with a Behavior Specialist thats what we are doing and they actually come to the house or he will meet us say at the Mall and we can practice going up/down the elevator a zillon times
Sometimes a behavior Therapist knows little tricks that others havent thought of. We carry tootsie rolls or gum for when he does a great job at trying to over come his fear. Its a pain but it helps. You son's fears are very real ( even though it maybe just to him ). Mike has Epilepsy and trust me he HATES the hospitle but he is starting to understand that they are there to help him so he feels better. Hopefully someday your son can understand that also. We have done alot of roll playing and using Social Stories to help him with certain non prefered things. I hope these ideas can help you both. If you need more ideas feel free to message me anytime. Big hugs my friend I know it is rough

 

[carebearkidney]

Thank you of2dbeach! I'm sorry you have "been there" before, but appreciate any insight. When he was first diagnosed, we had him on versed for the car ride...since it would take 1.5 - 3 hrs to get to the hospital (depending on Atlanta traffic) You know, a drop of rain brings a big city to a standstill! So we used that for cases that I couldn't be near him to comfort him and stop him from hurting himself. But other than that, we just used a lot of positive reinforcements and rewards for being "brave". We never yelled at him or did anything negative for the episodes, we just played up the wanted/desired behavior. That in itself worked wonders. We now know, vitals = stickers, labs = balloon glove, and doctor's exam = lollipop. May not be perfect, but it works for him!
The good part is that his triggers/episodes are becoming fewer and farther between. BUT that makes me have my guard down...which is NOT good! And when he does have one, it's a doozie! Right after transplant, he would have episodes daily! Then it become less and less and now it is completely random. His last one was last month!
I'll definitely look into "chicken" exits and be upfront with the cast members. Hope your son is doing better!!

 

[cm8]

Thank you of2dbeach! I'm sorry you have "been there" before, but appreciate any insight. When he was first diagnosed, we had him on versed for the car ride...since it would take 1.5 - 3 hrs to get to the hospital (depending on Atlanta traffic) You know, a drop of rain brings a big city to a standstill! So we used that for cases that I couldn't be near him to comfort him and stop him from hurting himself. But other than that, we just used a lot of positive reinforcements and rewards for being "brave". We never yelled at him or did anything negative for the episodes, we just played up the wanted/desired behavior. That in itself worked wonders. We now know, vitals = stickers, labs = balloon glove, and doctor's exam = lollipop. May not be perfect, but it works for him!
The good part is that his triggers/episodes are becoming fewer and farther between. BUT that makes me have my guard down...which is NOT good! And when he does have one, it's a doozie! Right after transplant, he would have episodes daily! Then it become less and less and now it is completely random. His last one was last month!
I'll definitely look into "chicken" exits and be upfront with the cast members. Hope your son is doing better!!

No advice just a great big

 

[carebearkidney]

No advice just a great big

Hugs and laughter ARE the best medicine! Thank you!

 

[of2dbeach]

ok on the laughter part.. One time many MANY years ago my DS who is now 19 ( Autism /Epilepsy) was about 3 and begged to go in the slide/ball pit thing at BK. I finally agreed thinking it would be good to have him "Play" with other kids etc. well that lasted about 5 mins when kids started flying down the slide and running inside to there parents. Then this child who was about 8 comes up to me in a southern Drawl ( we were traveling through Ga at the time ) says Lady ya kid up there is nakkie!! OMG yes!! worst part was I have 7 mo preg and couldnt crawl up there after him which would make him crawl backward further UP the tube thing from hell and I couldnt get to his clothes because they were inside with him in one of the tubes.. fast forward to how to solve the dilema ( stop giggling ) I had to pay said kid $5.00 to please get my sons clothes of course that worked ok till I saw in horror my son's clothes sliding down the slide! Then I had to bribe Mike with an ice cream to get him down and get dressed.. So yes this is just one of many horror stories but it still makes me laugh. He is known at the hospitle even years later for the kid who had a cashew stuck up his nose! yeah he was 2 thats another story all together!! Thought you could use a good laugh. If I didnt laugh I would be crazy by now

 

[crashbb]

I don't have any experience with PTSD, but it occurred to me that you might want to avoid the Figment/Imagination ride. I know that some scenes are supposed to be in a lab and I think that there are lab coats involved (though maybe your son is okay if the coat is being worn by a purple puppet?).

 

[jlcw14]

ok on the laughter part.. One time many MANY years ago my DS who is now 19 ( Autism /Epilepsy) was about 3 and begged to go in the slide/ball pit thing at BK. I finally agreed thinking it would be good to have him "Play" with other kids etc. well that lasted about 5 mins when kids started flying down the slide and running inside to there parents. Then this child who was about 8 comes up to me in a southern Drawl ( we were traveling through Ga at the time ) says Lady ya kid up there is nakkie!! OMG yes!! worst part was I have 7 mo preg and couldnt crawl up there after him which would make him crawl backward further UP the tube thing from hell and I couldnt get to his clothes because they were inside with him in one of the tubes.. fast forward to how to solve the dilema ( stop giggling ) I had to pay said kid $5.00 to please get my sons clothes of course that worked ok till I saw in horror my son's clothes sliding down the slide! Then I had to bribe Mike with an ice cream to get him down and get dressed.. So yes this is just one of many horror stories but it still makes me laugh. He is known at the hospitle even years later for the kid who had a cashew stuck up his nose! yeah he was 2 thats another story all together!! Thought you could use a good laugh. If I didnt laugh I would be crazy by now

It's good to look back now and laugh, isn't it?!?! My two kids - both ASD - gave me lots of OSM's over the years, too!

The one we laugh about the most now is when DS was about 8 or 9. We were visiting my parents and my DS slept about three hours that night. He had been to the bathroom and went out in their rec room to play with his toys. My Mom woke up a couple of hours later and was frantic - she had left her dentures to soak in the bathroom and they were missing! We immediately thought of DS. Sure enough, we went into the rec room, and there was his big stuffed Elmo with my mom's dentures in its mouth! One of the creepiest things I've ever seen!

On the not-so-funny side, but one of those "look how far we've come" benchmarks, on our first trip to WDW my DD closed down Kali River Rapids for a brief period. Yup, we had just got off the ride and she wanted to go again. We had just been on Primeval Whirl where they had let her ride twice without getting off, so she thought in her literal, ASD mind, that this could happen on EVERY ride! We got her off the ride OK, and were going to get back in line, but she decided to drop right near the beginning of the exit and have a melt down instead! We waited her out, and got lots of dirty looks and comments. Those really upset me at the time, but now when I look back, I remember the gentleman who stopped and offered us help, and was very kind. She had about four melt downs that trip, but none in the four trips since. Small victories!

 

[carebearkidney]

naked kids and creepy elmos, oh my!
What doesn't make us kill them, makes us love them more...at a much later date when we can look back and laugh.

And, no we didn't ride Journey into the Imagination last time...and I don't think we will this time either. The whole "pretend" train at the end would unsettle him for weeks I think!

 

[kandb]

You can get up and leave any show. I think the only one you really "can't" leave is Ellen's energy without shutting down the whole show. Other then that, any show you are in, if he gets upset, just go to the exit. Many parent's have to leave shows with scared little ones. Have a great vacation. PS I think Mickey's philharmonic is cute but it is LOUD and very "in your face". I think muppets is a bit mellower.