Come to the Dark Side...4 Weekends of Fun with the Force(Updated 11/12)

[ladylyons]

He has had two good days. I'm so glad because it really worried me when his legs gave out on him on Tuesday. Tonight he said goodbye to his friend. He cried. Tomorrow he gets two teeth pulled though I'm going to ask if it can just be one tooth this time and come back for the other since they are on opposite sides of the mouth.

Glad to hear he's had a couple good days in a row. I would have been scared too. It's got to be hard to see him go through some of these. That's got to be hard to say goodbye. Good luck tomorrow. Hopefully they listen to you and will do one at a time. I could see how it's easier to just get it done but sometimes it's not that easy on the person getting the procedure done.

 

[momabaarjo]

The gift is great and it's all JJ. I will have to ask if it's ok to post a picture.

Of course you can post a picture as long as it is okay with JJ. It is his gift. Goo and I were so happy to make it for him...Goo felt he needed a little more magic since he is having a rough time!

 

[lilpixiebabe101]

Sad to hear JJ isn't feeling well. I'm glad I spotted him. Ann was to happy to get to see you! I figured you thought I was a bit of a nut for realizing it was him, but he just has such a sweet smile, I knew I remembered it from previous dismeet pics with Ann and Tammie!

 

[lovethattink]

Glad to hear he's had a couple good days in a row. I would have been scared too. It's got to be hard to see him go through some of these. That's got to be hard to say goodbye. Good luck tomorrow. Hopefully they listen to you and will do one at a time. I could see how it's easier to just get it done but sometimes it's not that easy on the person getting the procedure done.

Sandra, he has had 7 good days in a row!!! Today we were back to the neurologist and she couldn't get over how much better he was today than our last visit. She was so impressed with the OT techniques he's been learning. The ONLY thing different between last visit and this past week, were specific OT exercises he had to do 3 times a day!

Of course you can post a picture as long as it is okay with JJ. It is his gift. Goo and I were so happy to make it for him...Goo felt he needed a little more magic since he is having a rough time!

Thanks! We love the picture. Dh says he wants to learn how to do that. You and Goo are awesome! Hope to see you both back here soon!

Sad to hear JJ isn't feeling well. I'm glad I spotted him. Ann was to happy to get to see you! I figured you thought I was a bit of a nut for realizing it was him, but he just has such a sweet smile, I knew I remembered it from previous dismeet pics with Ann and Tammie!

Aww, thanks. I didn't think you were a nut. I'm so glad you said something.

 

[kaoden39]

I am so thrilled to hear about JJ's improvements! That is just wonderful!

 

[mickeystoontown]

Michelle, I'm so very happy to hear how well JJ has been doing. That's fantastic!

 

[mommy2mrb]

for some great days, prayers they continue

 

[ladylyons]

Sandra, he has had 7 good days in a row!!! Today we were back to the neurologist and she couldn't get over how much better he was today than our last visit. She was so impressed with the OT techniques he's been learning. The ONLY thing different between last visit and this past week, were specific OT exercises he had to do 3 times a day!

How did I miss it's been a good week?? That's awesome!! Go JJ!!! So it sounds like the OT exercises might be helping?

 

[lovethattink]

I am so thrilled to hear about JJ's improvements! That is just wonderful!

Thanks! It's been rough since June, so it's so nice to get a break. Hopefully things will continue to improve. The tics he's been having this week are mild. For example, last night at theater practice his hand went into a tight fist that he couldn't unclench. He hid it from everyone by holding it with the other hand. We can certainly deal with this, it won't make him fall like some of the other's he had been having.

Michelle, I'm so very happy to hear how well JJ has been doing. That's fantastic!

It sure makes like easier.

for some great days, prayers they continue

Thanks. Appreciate the prayer.

How did I miss it's been a good week?? That's awesome!! Go JJ!!! So it sounds like the OT exercises might be helping?

I think they are definitely helping.

 

[lovethattink]

SWW Day 8

It was now June and play practice would be almost every day of the week. This Saturday he had practice until 2pm. It was at a church instead of the theater and the church provided the kids with both breakfast and lunch. It was really nice of them and the kids appreciated the food and drinks. I had eaten an omelet before I took him to play practice in the morning. As soon as he got out of practice we headed to Disney to meet up with dh who was already at SWW enjoying the park solo.

He got up early and went got in line for a FP/wristband for Tim Rose who was General Akbar. He asked for a later return time and got 5 to 5:15pm.

When JJ and I arrived at DHS, the parking lot was very full. Our parking spot was almost as far back as you could go and as far away from the tram as you could get. I texted dh with our row number and said we would be heading to the park entrance. The Convaid Cruiser is too big, bulky and heavy for me to get it on a tram. So JJ hopped in and I pushed him to the entrance. Dh met us at the security check.

We had no plans other than the 5pm Fast Pass. JJ asked if he could see some characters. He was so excited to see Darth Maul. He told us what he would say to him and practiced it as we walked. We entered the park with him still in monologue. Got as far as the hat. And suddenly I felt terrible. I had to sick down and right away. There were benches nearby, but they were all filled with people. Dh urged me to continue walking. I couldn’t. My legs felt like wet noodles. I plopped myself down on the ground. My vision went black. Dh changed from pushing me further to being very concerned. He forced me to drink his Power Aid. I dislike that stuff, especially the flavor he had. JJ angled his air conditioners on me and dh got the ice out of the cooler back and I held it on me. After a few minutes I felt better. I was able to make it to One Man’s Dream where we parked it for a while and I drank the rest of the Power Aid and a water. That was the first time ever, the heat got me.

We decided to go to Darth’s Mall instead of seeing Darth Maul. There is plenty to do inside there. And it’s a great place to beat the heat.

​

There was a Lego building area. We noticed it had moved from it’s previous location. There was an area to free-build a creation. JJ hopped on that opportunity. There was also a wall that was continuing to be constructed since the first weekend.

​

We hung out here until it was time for the celebrity autograph then headed over to Echo Lake. JJ enjoyed the M&G. I’m not sure what they talked about and he doesn’t remember any more. He said he knows he said, “it’s a trap.” Tim Rose’s famous line of the movie.

​

We stopped for some food. JJ was so patient. We could finally go to see Darth Maul. As we got into the queue, a little boy ran past us, jumped over JJ’s footrest and got in line ahead of us. Possibly it was his grandmother, excused herself and went up to him. Darth Maul had to leave, but they assured us he’d be back in about 10 minutes. Before we knew it, a group of a dozen or so pre-teen and teenagers went under the rope and joined the boy and his grandma. We had just gone from being the 7th, 8th and 9th people in line to about the 19th, 20th, and 21st. Perhaps if the boy hadn’t jumped over us to get to where they were, this wouldn’t have bothered us. JJ was deep into playing a video game on dh’s phone so he was oblivious to it all until he put the game down and asked for ice. He was getting hot. I got the ice out of the bag, which by this point was more than half melted from me using it earlier. He noticed all the people in front of us and asked how they got there.

Up until this point in all the weekends, we hadn’t needed to use JJ’s GAC. We contemplated if we should use it for him or not. Then we got to the point where he had to leave soon. Either we got out of line and try it another time after he cools off or one of us shows it to a cm to see if something could be done.

I got out of line and showed his GAC to one of the cm. He said we didn’t have to get in line with that stamp, we should have showed it to him right from the start. So after the family who was with Darth Maul was finished, he had JJ come around and meet with Darth Maul.

This was the first time during SWW 2013 we showed his GAC card to anyone. All the magic and pixie dust that happened before this point, was completely due to cast members who are excellent at what they do and go above and beyond. There would be one more time during SWW 2013 when we would use it for him.

​

During SWW 2012, JJ was having so much trouble seeing characters because of the heat. We were constantly having to get out of line because he was starting to seize. A cm told us to go to guest relations and ask for a particular stamp. It wasn’t as easy as she made it seem. I was put in contact with a cast member who went above and beyond for JJ. After several emails, phone calls and answering questions, I was called and given a GSF number for JJ and told to go to guest relations. Since this wasn’t a common stamp, when we went to guest relations, the cm was able to pull up JJ’s information, but he still had to contact our contact and get a manager to do the stamp. For SWW 2013, I called our contact, but she was no longer at that position. The cm who answered the phone pulled up JJ’s information in the computer and said that he would have to contact me later if this was possible again. Within a week or so, I heard back that JJ was approved again. He had a new GSF number this time, but I was told they were linked so either number would pull up the current information.
Due to the recent changes in the disability program at Disney, I’ve already been told that this probably won’t be a possibility for JJ for next year’s SWW. I’m appreciative and feel very blessed that he was able to have that accommodation in the past. I know there are many other people in similar situations where for one reason or the other outdoor characters are nearly impossible to see. I hope in the future Disney will continue to build new air conditioned M&G areas and/or develop a system to reserve a spot for outdoor characters. Fairytale Hall, Town Hall, and the new Mickey/Minnie M&G in the AK are fabulous. Disney did a great thing with those additions!

We’ve used the new DAS system and I will have our experience to report about.

Back to the TR. We stopped at the Backlot Express for a bite to eat. When we were finished JJ wanted to see if the Jawas were out. Sure enough, they were.

​

We got in line for a jedi. We were told that we’d probably see Mace Windu. That was fine with JJ.

​

The sky was starting to look like rain. It was back to Darth’s Mall to wait out the rain. We made it to R&R and the skies opened up. Made it to the inside of Darth’s Mall then it began to rain even harder. How nice of the rain to wait! The mall was like a ghost town. Not many people to be seen.

This was why the Lego stuff got moved. An Angry Bird game was in its old place.

​

The rain stopped so we left.

​

Instead of hanging around for the Hoopla, we decided to go back to the resort. We had an interesting day. I learned that I need to better hydrate myself. I drank more of the yucky flavored Power Aid and plenty of water. We were early to bed. And once again, JJ declared it the best day ever.

 

[lovethattink]

DAS​

Wednesday, October 9th, Disney started their new Disability Access Service. We decided to go and check it out.

Earlier in the day, I had called a number I was given in an email I had received from guest services. The email didn't specifically answer the myriad of questions I had. Instead I felt like it was a "canned" email. The bottom had a link of it had a link and a phone number if I had additional questions.

A cm named Brianna was extremely helpful. She was able to pull up both of the emails I sent and go one by one and answer my questions. She was very thorough and did a great job of explaining the answers to me. She even gave me a heads up that there is a list of air conditioned rest areas besides First Aid where we can take JJ to cool down. She told me to be sure to ask for that. She also said to be as detailed as possible.

I was pretty nervous about DAS when I called. After talking with Brianna I was much more at ease.

We arrived sometime around 6-ish. I expected mass chaos and Guest Services to be swamped. It wasn't. It was well organized and not nearly as busy as it has been the last few times I've been to GS.

I was 6th in line. There were cm with hand held devices going up to people in line asking if they could help. I wasn't approached by anyone, but the person two in front of me and directly behind me was.

Allyson was the cm who took care of us. She asked if I heard about the Disability Access System. I told her about the emails and the earlier phone conversation. She asked if it was ok to take my son's picture. I gave her permission. She came around the counter, bent down to his level, calmly and quietly talked to him and took his picture.

I was told on the phone that it's ok to opt out of the picture. A photo ID may be used in it's place. If this was the option I chose, a manager would be called to set it up that way. At GS, I was given the option of it being his picture or a parent's picture.

On the phone, I was told that the DAS was able to be use at more places than the GAC. It could be used at attractions such as Story Time with Belle and any character M&G that has a time posted. She also said it can be used at every single attraction.

There are terms and conditions that you must agree to and sign in order to have it issued to you.

If a wait time is less than 10 minutes you go directly to the FP line.

If a wait time is more than 10 minutes, a time gets written on your card.

You may return any time after that return time, but you may only have a return for one attraction at a time.



The card is 7X5 inches. It folds to 3.5X5 inches.

The return time is written on the card. The cm subtracts 10 minutes from the actual wait time.



For the first attraction, I did not tell JJ that I was getting a time. He and my husband went to play Sorcerer's of the Magic Kingdom. When it was time to ride the Jungle Cruise we went over there with my son not even knowing he had just waited for an attraction. This was the first time he had ever stayed in the wheelchair for the ride. The crew that loaded him was fantastic. They explained each step to him and made him feel at ease. Skipper Josh was amazing. JJ loves homonyms, so the play on words was right up his alley. As the ride was coming to an end, we were stopped while a boat was being taken off. Skipper Josh told additional quips that we hadn't heard before. JJ thought they were great. After everyone had exited the boat except JJ, Skipper Josh gave him a Guest Skipper for the World Famous Jungle Cruise card! That just made his day.



We went across to the Magic Carpets to get a return time. This time JJ was with us. As we went away from the attraction, he began to panic. He was worried that he couldn't eat, go to the bathroom, or anything until that time. I told him not to worry. That we could come back any time after the time on the card. He was relieved and wanted to go to Pecos Bills for turkey.

I told him we could get a fast pass for another attraction. He was not receptive to that idea. He felt too nervous about having to return by a certain time. He worries about having to go to the bathroom, or having a seizure, or having a full body tic because he's so nervous. So we did not get any fast passes.

We left Pecos Bills as the parade was arriving in Frontierland. And headed to the Magic Carpets. There was no wait for anybody. Adventureland was practically a ghost town. After the ride JJ wanted to go home.

After three hours in the park, he was able to ride two attractions and eat supper. It definitely took some work on my husband's and mine behalf to keep him occupied between ride times. However, as we were heading to the car at the Ticket and Transportation Center, he declared it the best day ever in typical Phinneas and Ferb fashion!

 

[mommy2mrb]

great update!

you probably had the issue due to pushing JJ all that way too! not fun feeling that way, I've had heat exhaustion 3 times am very careful now in the heat!

did DH enjoy his solo time in the park?

the star war's wall, assume its all made out of legos! very cool!

nice the CM got you guys up to the front of the line and was able to have the special GAC card, interested in how you are liking the new DAS system, hope it works well for JJ.

we are so excited to see you guys, 6 weeks until we leave!
finally got BOG lunch FP+ yesterday so we get to eat lunch and dinner there
all my plans are now set, just have to wait to pack and get there!

hope you have a wonderful weekend, planning to go to WDW?

we are going to a special Mouse Meet tomorrow with a local Disney loving group and guess who we get to have lunch with.........




Marty Sklar can't wait to meet him!

 

[lovethattink]

great update!

you probably had the issue due to pushing JJ all that way too! not fun feeling that way, I've had heat exhaustion 3 times am very careful now in the heat!

did DH enjoy his solo time in the park?

the star war's wall, assume its all made out of legos! very cool!

nice the CM got you guys up to the front of the line and was able to have the special GAC card, interested in how you are liking the new DAS system, hope it works well for JJ.

we are so excited to see you guys, 6 weeks until we leave!
finally got BOG lunch FP+ yesterday so we get to eat lunch and dinner there
all my plans are now set, just have to wait to pack and get there!

hope you have a wonderful weekend, planning to go to WDW?

we are going to a special Mouse Meet tomorrow with a local Disney loving group and guess who we get to have lunch with.........




Marty Sklar can't wait to meet him!

You're probably right. It was a long haul and hot walk. 3 times? I'll be keeping an extra eye on you if it's hot when you're here.

Dh loved his solo time in the park. I think I could use some solo time myself! Yes all Legos.

I must have been posting about the new DAS as you were posting. It will definitely take some planning and it's a bit more work. It worked best when JJ didn't know about a return time. It's nice that he doesn't have to be present to get the time, just to come back and ride it.

Yay for BOG!! I loved lunch there. I'm sure you and Megan will too.

We are going to Disney for Columbus Day weekend. Not the full weekend, just part of it. And Monday going to MNSSHP! This will be our 4th party of the season. Since we didn't get to go up north on vacation we ended up going to several parties, Sept 17, 24, and 27. The 27th's was full capacity. The 17th's was fairly empty. At every single one, JJ turned into a pumpkin at 10pm.

Enjoy your meet!! Post a pic!

 

[mommy2mrb]

You're probably right. It was a long haul and hot walk. 3 times? I'll be keeping an extra eye on you if it's hot when you're here.

no worries, I drink LOTS of water anyways

Dh loved his solo time in the park. I think I could use some solo time myself! Yes all Legos.

that's good! you deserve some solo time too! very cool, sure that took some time to create!

I must have been posting about the new DAS as you were posting. It will definitely take some planning and it's a bit more work. It worked best when JJ didn't know about a return time. It's nice that he doesn't have to be present to get the time, just to come back and ride it.

just went back to read it....sounds like a good idea, especially getting the character M & G now too! only bummer is having to go and wait, would be nice if you could schedule 3 at a time kind of like the FP+ system, did they want your feedback after using it??

Yay for BOG!! I loved lunch there. I'm sure you and Megan will too.

we can't wait!

We are going to Disney for Columbus Day weekend. Not the full weekend, just part of it. And Monday going to MNSSHP! This will be our 4th party of the season. Since we didn't get to go up north on vacation we ended up going to several parties, Sept 17, 24, and 27. The 27th's was full capacity. The 17th's was fairly empty. At every single one, JJ turned into a pumpkin at 10pm.

yay for another party! that's the way to do it, so you don't miss out on any of the fun! have a great time!

Enjoy your meet!! Post a pic!

thanks! will post a photo here to share

 

[wiigirl]

Great update!

 

[lovethattink]

Great update!

Thanks!

 

[cgncga]

DAS​

Monday, October 9th, Disney started their new Disability Access Service. We decided to go and check it out.

We arrived sometime around 6-ish. I expected mass chaos and Guest Services to be swamped. It wasn't. It was well organized and not nearly as busy as it has been the last few times I've been to GS.

I was 6th in line. There were cm with hand held devices going up to people in line asking if they could help. I wasn't approached by anyone, but the person two in front of me and directly behind me was.

Allyson was the cm who took care of us. She asked if I heard about the Disability Access System. I told her about the emails and the earlier phone conversation. She asked if it was ok to take my son's picture. I gave her permission. She came around the counter, bent down to his level, calmly and quietly talked to him and took his picture.

I was told on the phone that it's ok to opt out of the picture. A photo ID may be used in it's place. If this was the option I chose, a manager would be called to set it up that way. At GS, I was given the option of it being his picture or a parent's picture.

On the phone, I was told that the DAS was able to be use at more places than the GAC. It could be used at attractions such as Story Time with Belle and any character M&G that has a time posted. She also said it can be used at every single attraction.

There are terms and conditions that you must agree to and sign in order to have it issued to you.

If a wait time is less than 10 minutes you go directly to the FP line.

If a wait time is more than 10 minutes, a time gets written on your card.

You may return any time after that return time, but you may only have a return for one attraction at a time.



The card is 7X5 inches. It folds to 3.5X5 inches.

The return time is written on the card. The cm subtracts 10 minutes from the actual wait time.



For the first attraction, I did not tell JJ that I was getting a time. He and my husband went to play Sorcerer's of the Magic Kingdom. When it was time to ride the Jungle Cruise we went over there with my son not even knowing he had just waited for an attraction. This was the first time he had ever stayed in the wheelchair for the ride. The crew that loaded him was fantastic. They explained each step to him and made him feel at ease. Skipper Josh was amazing. JJ loves homonyms, so the play on words was right up his alley. As the ride was coming to an end, we were stopped while a boat was being taken off. Skipper Josh told additional quips that we hadn't heard before. JJ thought they were great. After everyone had exited the boat except JJ, Skipper Josh gave him a Guest Skipper for the World Famous Jungle Cruise card! That just made his day.



We went across to the Magic Carpets to get a return time. This time JJ was with us. As we went away from the attraction, he began to panic. He was worried that he couldn't eat, go to the bathroom, or anything until that time. I told him not to worry. That we could come back any time after the time on the card. He was relieved and wanted to go to Pecos Bills for turkey.

I told him we could get a fast pass for another attraction. He was not receptive to that idea. He felt too nervous about having to return by a certain time. He worries about having to go to the bathroom, or having a seizure, or having a full body tic because he's so nervous. So we did not get any fast passes.

We left Pecos Bills as the parade was arriving in Frontierland. And headed to the Magic Carpets. There was no wait for anybody. Adventureland was practically a ghost town. After the ride JJ wanted to go home.

After three hours in the park, he was able to ride two attractions and eat supper. It definitely took some work on my husband's and mine behalf to keep him occupied between ride times. However, as we were heading to the car at the Ticket and Transportation Center, he declared it the best day ever in typical Phinneas and Ferb fashion!

Sounds like the DAS worked okay for JJ. That's good to hear. It makes me think that it will work okay for Grace, too. I can see that it might be a bit of a job to put in time between return times, but once you get him convinced to use fastpasses along with the DAS that should help to make the waiting time shorter.

Glad to hear that his tics are becoming more managable, too.

Catherine

 

[ladylyons]

I hope the techniques JJ is using now continues to help him stay tick free.

Sorry to hear you felt so sick. I've only had heat exhaustion once and learned to make sure that I continue to drink water even if I don't feel thirsty (due to that thinking I've managed to keep the kids free of dehydration). I love the pictures with Darth Maul!! I'll have to show them to Jeremy tomorrow!

 

[lovethattink]

thanks! will post a photo here to share

Great!

Yes, they did want feedback. I sent an email yesterday about our experience.

Sounds like the DAS worked okay for JJ. That's good to hear. It makes me think that it will work okay for Grace, too. I can see that it might be a bit of a job to put in time between return times, but once you get him convinced to use fastpasses along with the DAS that should help to make the waiting time shorter.

Glad to hear that his tics are becoming more managable, too.

Catherine

Yes, it was ok at the MK. We'll have to check out the other parks. I'm sure Epcot will be fine since we rarely used his GAC there. Animal Kingdom and DHS concern me.

I hope the techniques JJ is using now continues to help him stay tick free.

Sorry to hear you felt so sick. I've only had heat exhaustion once and learned to make sure that I continue to drink water even if I don't feel thirsty (due to that thinking I've managed to keep the kids free of dehydration). I love the pictures with Darth Maul!! I'll have to show them to Jeremy tomorrow!

He ticked at theater practice on Thursday, but he was able to hide it from the other kids. His fist got stuck in a clench. He put his other hand over it to hide it. He's been feeling the urge to squeeze things lately. I mentioned something to the therapist and she gave him a small jar of therapeutic putty. She gave him the strongest kind. Once he got in the car, he put that in his hand and it helped.

Yes, hydration ahead of time is key. And not with something that has caffeine or it will defeat the purpose. Say hi to Jeremy for us.

We are going to Sea World today to check out their Halloween Spooktacular. It's included with admission. I've been drinking Power Aid all morning. I can tolerate the orange, but red (I guess cherry) was all that was left at home. Yuck! We wont be staying long. Just a couple hours. Maybe we'll stop by the F&W Festival afterwards?

 

[pwdebbie]

Finally had a chance to play catch-up on the DIS.

I am surprised no CMs came to offer you assistance. I'm glad you were able to continue on. I just love to see how much JJ enjoys himself at the M&Gs.

Thank you for the review of the new system. Not sure it would work for us but then again, I don't think there are any more Disney trips in our future, so it doesn't really matter.