Need suggestions for daughter with Tourette’s syndrome

[FireflyTrance]

Hello! This is my first time posting in the group and I am not too familiar with disability accommodations at WDW. We have been to WDW a few times but that was before my daughter’s disability got more severe. Late last year my 8 year old daughter was diagnosed with Tourette’s syndrome. Tourette’s syndrome is characterized by uncontrollable movements and/or noises called tics. My daughter started having head jerking and vocal tics. It progressed to full body tics where she was falling over and getting injured. We have been seeing a neurologist and eventually found a medication that reduces them, but unfortunately the medication does make her tired. We went to Disneyland in June and she was too tired to walk through the longer lines so we didn’t get to go on any ride with a wait time longer than 20 minutes. In the line she would keep sitting on the ground and refusing to walk, basically holding up the line or forcing people to walk around her. I asked a cast member if we could bring a stroller through the line, but we were told we couldn’t. She can still fit in a stroller but probably not for too much longer. We have a trip to WDW planned in Feb but I’m worried we once again won’t be able to get on rides because she will be too tired to walk through the lines. The rest of the family is fine waiting in line. What would you suggest? Thanks!

 

[lanejudy]

I am so sorry that CM wasn’t helpful! Go to Guest Relations and request a “stroller as wheelchair” tag. You will be allowed to bring the stroller through the queue with that tag. The few queues that aren’t accessible will direct you to an alternative entrance.

As she grows, you may want to consider a special needs stroller or pediatric wheelchair.

 

[Betty Rohrer]

Hello! This is my first time posting in the group and I am not too familiar with disability accommodations at WDW. We have been to WDW a few times but that was before my daughter’s disability got more severe. Late last year my 8 year old daughter was diagnosed with Tourette’s syndrome. Tourette’s syndrome is characterized by uncontrollable movements and/or noises called tics. My daughter started having head jerking and vocal tics. It progressed to full body tics where she was falling over and getting injured. We have been seeing a neurologist and eventually found a medication that reduces them, but unfortunately the medication does make her tired. We went to Disneyland in June and she was too tired to walk through the longer lines so we didn’t get to go on any ride with a wait time longer than 20 minutes. In the line she would keep sitting on the ground and refusing to walk, basically holding up the line or forcing people to walk around her. I asked a cast member if we could bring a stroller through the line, but we were told we couldn’t. She can still fit in a stroller but probably not for too much longer. We have a trip to WDW planned in Feb but I’m worried we once again won’t be able to get on rides because she will be too tired to walk through the lines. The rest of the family is fine waiting in line. What would you suggest? Thanks!

follow lanejudy's advice and get your tagged as a wheelchair. been there and done for a different reason but it was trip saver

 

[FireflyTrance]

Thanks! She can walk for a little while, but DL and WDW involve so much walking she gets exhausted and she can’t make it through the whole day. I will try requesting the stroller as a wheelchair tag. On my last trip I didn’t think about it that much beforehand and the trip didn’t go as well as I had hoped, mostly because we didn’t get to go on many rides due to her refusing to wait in the lines. Do I need to bring documentation to get the tag, or they just take our word on it? Thanks!

I am so sorry that CM wasn’t helpful! Go to Guest Relations and request a “stroller as wheelchair” tag. You will be allowed to bring the stroller through the queue with that tag. The few queues that aren’t accessible will direct you to an alternative entrance.

As she grows, you may want to consider a special needs stroller or pediatric wheelchair.

 

[lanejudy]

Do I need to bring documentation to get the tag, or they just take our word on it?

No documentation. Just briefly explain how it will help her in the queues. Since you now have experience without it, draw on that for the explanation.

 

[shosh1530]

If you think waiting in lines will be difficult even with the stroller as a wheelchair, you might also inquire about the Disability Access Pass. This allow you to wait the same amount of time, just outside of the regular queue. You would have to ask at guest services and explain how your child disability makes it difficult to wait in the regular queue (outside of mobility/stamina issues that can be accommodated with the stroller/wheelchair). We've gotten both DAS and the stroller as a wheelchair tag at the same time.

 

[Weedy]

A little more information about the DAS.
The DAS lets you get a return time to the attraction so that you can wait away from the crowded line.
Right now when you arrive for your trip you go to Guest Relations at one of the parks and tell them why waiting in line is difficult for your daughter ( you can also get a tag for your stroller at the same time).
With the DAS you will go to the attraction and get a return time ( it is 10 minutes less than the wait time for the attraction) When you return you will enter what was the Fastpass line. You can only have one DAS pass at a time.
But!!!
This is about to change but Disney hasn’t given a start date.
The change will be you will be able to apply for the DAS prior to your trip via a video call. You will get 2 Das passes prior to your trip then once in the park you can book your DAS pass via the app on your phone
I think it will be active by February

 

[SueM in MN]

This thread has information about the changes that are coming for DAS.
The first post in the thread is being updated as we get more information.
DAS changes coming with Genie

 

[DLgal]

You'd qualify for a DAS, most likely. I'd go with that, plus the Stroller as Wheelchair tag for the longer lines or rides with longer waits once you enter the line.

 

[CJN]

Another suggestion I’d offer is to be aware of the first aid centers if you need a private/quiet place to retreat for a bit.

My nephew’s tics - head jerks and vocalizations - started at around the same age as your daughter. Our first Disney trip after his diagnosis involved a steep learning curve with some meltdowns. One thing we finally figured out is how much energy he was expending trying to suppress his tics in public. But by mid-afternoon they would be overwhelming and he’d feel exhausted. Yet the suggestion of leaving the park for a rest period brought on the meltdowns because he felt like he was being punished. It was distressing all around. The first aid centers to the rescue. In the privacy of the rooms there, he could let loose with the tics without anyone staring. It gave both him and his parents the chance to let go of some anxiety. Even if your daughter’s situation is different it can be good to keep the first aid centers in mind as a possible resource.

 

[FireflyTrance]

Thanks so much for this suggestion! I didn’t know this was even an option. I do think she is able to suppress her tics to some extent, but by late afternoon they become much more noticeable. She would never want to leave the park either I’m sure.

Another suggestion I’d offer is to be aware of the first aid centers if you need a private/quiet place to retreat for a bit.

My nephew’s tics - head jerks and vocalizations - started at around the same age as your daughter. Our first Disney trip after his diagnosis involved a steep learning curve with some meltdowns. One thing we finally figured out is how much energy he was expending trying to suppress his tics in public. But by mid-afternoon they would be overwhelming and he’d feel exhausted. Yet the suggestion of leaving the park for a rest period brought on the meltdowns because he felt like he was being punished. It was distressing all around. The first aid centers to the rescue. In the privacy of the rooms there, he could let loose with the tics without anyone staring. It gave both him and his parents the chance to let go of some anxiety. Even if your daughter’s situation is different it can be good to keep the first aid centers in mind as a possible resource.

 

[FireflyTrance]

Thanks! I will have to think about it. She would probably prefer to wait nearby on a bench somewhere. She does sometimes get self conscious about her tics and strangers “noticing” them. So for that reason she would probably prefer to not go through the line and just be able to wait somewhere else. But I do think she could go through the line as long as she can sit in the stroller if she gets tired from walking.

If you think waiting in lines will be difficult even with the stroller as a wheelchair, you might also inquire about the Disability Access Pass. This allow you to wait the same amount of time, just outside of the regular queue. You would have to ask at guest services and explain how your child disability makes it difficult to wait in the regular queue (outside of mobility/stamina issues that can be accommodated with the stroller/wheelchair). We've gotten both DAS and the stroller as a wheelchair tag at the same time.

 

[mamabunny]

Thanks! I will have to think about it. She would probably prefer to wait nearby on a bench somewhere. She does sometimes get self conscious about her tics and strangers “noticing” them. So for that reason she would probably prefer to not go through the line and just be able to wait somewhere else. But I do think she could go through the line as long as she can sit in the stroller if she gets tired from walking.

Just remind her that "normal" is nothing more than a setting on the washing machine. We are all beautifully, wonderfully imperfect - it's what makes each of us unique and interesting, and yes - beautiful too!

 

[Betty Rohrer]

Thanks! I will have to think about it. She would probably prefer to wait nearby on a bench somewhere. She does sometimes get self conscious about her tics and strangers “noticing” them. So for that reason she would probably prefer to not go through the line and just be able to wait somewhere else. But I do think she could go through the line as long as she can sit in the stroller if she gets tired from walking.

just remember Disney had removed a lot of the benches and if she does get das she would still go thru the old FP line so she could still a short wait as it is not front of line or in the exit

 

[FireflyTrance]

Thanks everyone! I just want her to have a nice experience when we go. She has a low frustration tolerance due to a combination of the medication she is on, the tics themselves, and trying to suppress the tics in public since she sometimes gets self conscious. So she would probably have a better experience with the DAS pass. I just don’t want to feel like we are abusing the DAS because she can wait in the lines if she has a place to sit (such as a stroller), it’s just a much bigger struggle for her to wait than it would be for most neurotypical kids her age. I wish they still had FP+ as that would have helped too.

 

[TwoMisfits]

Thanks everyone! I just want her to have a nice experience when we go. She has a low frustration tolerance due to a combination of the medication she is on, the tics themselves, and trying to suppress the tics in public since she sometimes gets self conscious. So she would probably have a better experience with the DAS pass. I just don’t want to feel like we are abusing the DAS because she can wait in the lines if she has a place to sit (such as a stroller), it’s just a much bigger struggle for her to wait than it would be for most neurotypical kids her age. I wish they still had FP+ as that would have helped too.

If she can wait in a stroller in lines, be ready for Disney to accept that as the accommodation and to not provide a DAS pass.

If FP+ helps, they may also suggest Genie+ when comes on line later this month (which is the rumor)...

 

[Weedy]

Thanks everyone! I just want her to have a nice experience when we go. She has a low frustration tolerance due to a combination of the medication she is on, the tics themselves, and trying to suppress the tics in public since she sometimes gets self conscious. So she would probably have a better experience with the DAS pass. I just don’t want to feel like we are abusing the DAS because she can wait in the lines if she has a place to sit (such as a stroller), it’s just a much bigger struggle for her to wait than it would be for most neurotypical kids her age. I wish they still had FP+ as that would have helped too.

Please go to Guest Relations and explain your daughters needs. The DAS is for people that need a little extra help to have a magical vacation.
You may not need to use it on every ride or maybe just later in the day when she is tired.

 

[Betty Rohrer]

Please go to Guest Relations and explain your daughters needs. The DAS is for people that need a little extra help to have a magical vacation.
You may not need to use it on every ride or maybe just later in the day when she is tired.

I agree there is nothing that says you have to use DAS on every ride

 

[SueM in MN]

Some people‘s needs are totally met by using a mobility device in line (wheelchair, ECV or stroller as a wheelchair). If that does the trick - great, you’ve found what works for you.

But, other people have additional needs that are not addressed by using the mobility device. For example, my daughter has cerebral palsy, which prevents her from being able to walk. She uses a wheelchair to meet those needs. But, she has other conditions that are not met by the wheelchair that prevent her from waiting in the regular lines. It’s those that we need to explain to Guest Relations to obtain DAS.

 

[Weedy]

An example of what works well for a family using the DAS.
Go to an attraction that has a long wait time and request a DAS. Then go to a nearby attraction that has a short wait time and ride that (without a DAS) then maybe get a snack. By this time your DAS time should be up snd you then go to that.
Hopefully this will be less stressful for her.