Need suggestions for daughter with Tourette’s syndrome

[DLgal]

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)...

Generally, when you go in asking for the stroller as wheelchair tag, the CM will offer up the DAS. I've seen it happen multiple times. Typically "stroller as wheelchair" isn't used for mobility reasons and they want to make sure guests know about how the DAS can be helpful.

 

[DLgal]

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.

You won't be abusing the DAS. Stop worrying about that. The DAS is simply a tool you can get, and use as you NEED it. You can get it and never use it, or you can use it for every ride. It's up to you. You are in control.

 

[LucFerrari]

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!

Hello, Welcome, this is my first written message on this forum, and I would just like to say that im 14 and I have similar problems to your daughter, yet im not inflicting pain on myself, just extreme anxiety due to distracting people when I cant help it. I have almost 30 ongoing tics at a time and they are all in a specific pattern. Did you have tics growing up? If not, you need to try to put yourself in your daughter's shoes. When you talk about it to her, do not call it a disability, because it is quite offensive to some people. Try seeing an osteopath, thats what im doing right now, and im using homeopathic. It's not affecting anything at all, apart from helping me deal with the tics. Also, something proven by science which can be extremely effective is doing intense exercise. Preferably outside, (right now im doing atleast 4-4 1/2 hours per day) and it helps to keep my mind off of it. I noticed that when i skip the exercise for a day, the tics are much worse. Every specialist i have seen has said that they usually go away before you are an adult. I try not to think about it. Something that helps a lot is to not talk about it AT ALL. If she has any other family, you should discuss with them and your daughter that you will not talk about it, because bringing it up brings it onto your conscience, which leads to making it worse. It is much worse at school for me than home, because at school i get constant comments on it, because i have to make noises during exams and I have to scratch people's arms, turn around and look at someone's work. The list goes on. Ignoring is a good idea to try, but not to neglect. I hope that this was helpful, and good luck. If your daughter would like, I could talk to her and it might help not just her, but me aswell to understand. If not, im totally ok with that. Thank you if you read this far

 

[FireflyTrance]

Thank you for your post! I hadn’t logged on here for a while so I just saw it now. I don’t call it a disability when I talk to her, I just refer to it as tics. We do try to ignore it and not bring it up unless she initiates a conversation about it. I think at first I didn’t understand that and did bring it up, but when my daughter had CBIT therapy that was the suggestion, to just ignore it and create a safe space at home where she would not feel self conscious, so that’s what we try to do as best we can. Thank you for the tip on exercise. Other kids do bring it up to her in school, I’ve talked to the teachers but she can’t necessarily stop other kids from commenting, and the kids don’t necessarily understand it’s involuntary. I appreciate you commenting and offering your insight. It’s definitely a learning curve for me as well.

Hello, Welcome, this is my first written message on this forum, and I would just like to say that im 14 and I have similar problems to your daughter, yet im not inflicting pain on myself, just extreme anxiety due to distracting people when I cant help it. I have almost 30 ongoing tics at a time and they are all in a specific pattern. Did you have tics growing up? If not, you need to try to put yourself in your daughter's shoes. When you talk about it to her, do not call it a disability, because it is quite offensive to some people. Try seeing an osteopath, thats what im doing right now, and im using homeopathic. It's not affecting anything at all, apart from helping me deal with the tics. Also, something proven by science which can be extremely effective is doing intense exercise. Preferably outside, (right now im doing atleast 4-4 1/2 hours per day) and it helps to keep my mind off of it. I noticed that when i skip the exercise for a day, the tics are much worse. Every specialist i have seen has said that they usually go away before you are an adult. I try not to think about it. Something that helps a lot is to not talk about it AT ALL. If she has any other family, you should discuss with them and your daughter that you will not talk about it, because bringing it up brings it onto your conscience, which leads to making it worse. It is much worse at school for me than home, because at school i get constant comments on it, because i have to make noises during exams and I have to scratch people's arms, turn around and look at someone's work. The list goes on. Ignoring is a good idea to try, but not to neglect. I hope that this was helpful, and good luck. If your daughter would like, I could talk to her and it might help not just her, but me aswell to understand. If not, im totally ok with that. Thank you if you read this far

 

[SteveMouse]

Generally speaking, if the issue with waiting in queue is due to a mobility issue, DAS will not be issued and a mobility device recommended. Stamina is often/usually considered a mobility issue.

Also noteworthy- the stroller as wheelchair tag applies to the entire Land building in Epcot.

 

[Sakurachaek]

I think there’s ‘safe spaces’ in the park that are used for autism as well, so that could help your daughter. They’re like quiet spaces without anyone around where your daughter wouldn’t need to worry about anyone looking at her.

 

[gap2368]

I think there’s ‘safe spaces’ in the park that are used for autism as well, so that could help your daughter. They’re like quiet spaces without anyone around where your daughter wouldn’t need to worry about anyone looking at her.

First aid is the only place you can go to be truly alone. All the other are just out in the open with less people normally around

 

[LucFerrari]

Hello, Welcome, this is my first written message on this forum, and I would just like to say that im 14 and I have similar problems to your daughter, yet im not inflicting pain on myself, just extreme anxiety due to distracting people when I cant help it. I have almost 30 ongoing tics at a time and they are all in a specific pattern. Did you have tics growing up? If not, you need to try to put yourself in your daughter's shoes. When you talk about it to her, do not call it a disability, because it is quite offensive to some people. Try seeing an osteopath, thats what im doing right now, and im using homeopathic. It's not affecting anything at all, apart from helping me deal with the tics. Also, something proven by science which can be extremely effective is doing intense exercise. Preferably outside, (right now im doing atleast 4-4 1/2 hours per day) and it helps to keep my mind off of it. I noticed that when i skip the exercise for a day, the tics are much worse. Every specialist i have seen has said that they usually go away before you are an adult. I try not to think about it. Something that helps a lot is to not talk about it AT ALL. If she has any other family, you should discuss with them and your daughter that you will not talk about it, because bringing it up brings it onto your conscience, which leads to making it worse. It is much worse at school for me than home, because at school i get constant comments on it, because i have to make noises during exams and I have to scratch people's arms, turn around and look at someone's work. The list goes on. Ignoring is a good idea to try, but not to neglect. I hope that this was helpful, and good luck. If your daughter would like, I could talk to her and it might help not just her, but me aswell to understand. If not, im totally ok with that. Thank you if you read this far

Turns out I am now inflicting pain on myself.. like punching walls or my metal fan xd xdx d (one that stands) andxdxxxxd and i still have a cut on it after 2 months xxdxd now...

 

[mamabunny]

Turns out I am now inflicting pain on myself.. like punching walls or my metal fan xd xdx d (one that stands) andxdxxxxd and i still have a cut on it after 2 months xxdxd now...

Please let your doctor know about this new behavior. It's important for your health and safety.