Tourette Syndrome Issues?

[woodkins]

My dd 6 has recently been having tics and has been diagnosed with Tourette Syndrome. Although this is difficult, it isn't a surprise since dh has a severe case of Tourette's as well.
My question/concern is that our next trip will be our first with out daugher having tics of her own. She is VERY self conscious of her tics and I don't know how she will handle the stares of the people while standing in line etc. We normally do get stares as my dh is 6'2 290lbs linebacker sized having major vocal/motor tics, but she has only know dh as having tics, so never put 2 and 2 together. Now she is realizing that she is different and that it does attract attention, which makes her more anxious, thus ticking even more. Disney has always been a magical place for her & I don't want it to be a cause of stress or worry for her.
I know that they are cutting back on the reasons for GAC passes, but I am wondering if I should try to get one so that she doesn't have to wait in the standard waiting areas with the large numbers of people. Am I being a ridiculous overprotective mom? Will they offer me some type of accommodation, or is it not one of the GAC elgible disabilities?
Thanks for your info and help....Krysta

 

[SueM in MN]

Will they offer me some type of accommodation, or is it not one of the GAC elgible disabilities?
Thanks for your info and help....Krysta

There are actually not any GAC eligible disabilities.

One of the points that people often forget (or maybe never knew) is that the ADA does NOT provide accomodation for
autism,
ADD,
ADHD,
asthma,
blindness,
cerebral palsy,
diabetes,
epilepsy,
paralysis,
MS
or any other condition anyone cares to name.

The ADA provides accomodation for needs related to disability (which may be due to one of the things listed above.)
Whatever condition is being referred to, some people with that conditions may have needs that are accomodated by something that everyone has access too (for example, some people mentioned using touring plans, bringing GameBoys in line, using Fastpass). They would not need a GAC.

Some people with that same condition might not have their needs accomodated by those things, but might only need some slight assistance, such as being able to bring a stroller into line. They may need a GAC with a few accomodations.

Some might have more needs and require a GAC with more accomodation.

Some might have more needs, but may not have a problem with those needs at certain times (for example, during slow seasons or slow times at the park, when the wait in line might be less than 10 minutes). They may need a GAC at busier times, but not when it is quiet.

Not everyone, even with the same condition, has the same needs.

If you haven't read the disABILITIES FAQs thread, I'd suggest you read post #6 of that thread, which is about GACs and then be ready to explain your DD's needs to the CMs at Guest Relations.

For most shows, the quieter waiting place is the same place that guests using wheelchairs and ECVs wait so that they will be able to get to the accessible seats in the theater. When it is busy, those spots are often quite full, so you would not be 'escaping' to a really quiet are. What might actually work better for you than a GAC would be using Fastpasses and a touring plan (like TourGuide Mike or RideMax) that helps you avoid the busy places and busy times for the different parks. That would also help you outside of attractions, since you would be going to the least busy parks. One thing people often don't think of is that the GAC only helps while waiting for attractions, but if the park is busy, you are going to have a lot of contact with people while you are just getting from place to place. Using a touring plan that puts you in the quieter places will help you avoid that and help her to be less anxious.

 

[mechurchlady]

Anxiety, stress and fatigue heighten many things in people. The only way to deal with it is to learn to handle it. Mom is screaming for her midnight snack so I can let that stress me out or continue my life at my pace and not jump up and run to her. Your daughter is going to have to learn to handle her situation and realize that she can control some things.

Having tics is not any different from being in a chair, being a flapping autistic kid, having a giant mole on your nose or wearing bright pink hair. There are no private rooms for waiting at the parks. You could be put in line with the disabled people and end up having some dude in a wheelchair staring at your daughter. Trust me that we disabled folks and neurovariants can be as rude as any nondisabled person or neurotypical person.

Your daughter is going to have to get a chip on her shoulder and an attitude to deal with the rude people of the world. Ask Becky and Nicole how it feels to have people staring at an autistic kid who is being their typical kid like self.

Good luck on your trip and I seem to be blunt but honest.
hugs and chocolates
Laurie

 

[bookwormde]

In addition to just enjoying WDW, we use it as an opportunity to “work” in different skills for our DS9 Aseprgers since the “family” has our undivided attention there. Your dd is getting to the age where I would think increasing her education about Tourettes and societies reaction to neurovariations is important. She is fortunate to have a “role model” member of the family to look up to. Understanding that the “reactions” of some people are about lack of knowledge or just plane sociological fear of anything “different”, and that it has nothing to do with her as a person is one of those critical lessons. One thing I have discussed with my son is that his differences have that advantage of creating a filter, which tends to remove those who are intolerant of any differences and that saves a lot of time in being able to surround yourself with the “best” people that society has to offer.

My thoughts on the GAC (which we use rarely) is that if the queues create a level of anxiety that is damaging to the person or disruptive to person or other guests ability to equally enjoy the experience, then the GAC is appropriate. As I have said we mostly use the line (and fast pass a lot) since this is a good chance to work on crowds and others reactions when we are not in a hurry and GAC just gives us the opportunity to “bail out” without the “trauma” of DS thinking that he will not be able to enjoy the attraction at all which really eliminates a big part of the potential anxiety (worrying about not being able to do something difficult or uncomfortable really creates an anxiety feedback loop).

bookwormde

 

[bethclayton]

my dd and dh have tourette's as well. my only concern in your case is that if she uses a GAC, will that just reaffirm her fear that she is "too different" to be in the lines with everyone else? will she think there's something "wrong" with her? i think using fp's liberally is a better strategy. i think with TS it is important that we show our kids that these tics are just nothing to worry about, they are just part of who they are. people are always going to stare, and as difficult as that is, we have to get used to it because it probably isn't going to magically go away just yet.

i think a great strategy would be to try and keep her distracted. i believe there are books you can buy with activities to do while you are in lines in the parks (like hidden mickeys you can find, etc.). i saw a few families with them on our recent trip. if she's engaged in something fun, she will hopefully be less anxious and have fewer tics. if she does have tics that make people stare, just do your best to keep her entertained and keep her focused on you so she does not see them staring. also, give her time throughout each day to let some of the tics out in more secluded areas of the parks.

 

[woodkins]

Thank you for all of your posts. I do agree that my daughter will have to develop some defenses and we do explain to her that the people who stare and point etc. are uneducated and that it is not a personal attack on her or my husband. As I said my dh has TS & so we have discussed what TS is, how to address it to others, and how to deal with the pointing. Having to deal with the way others treat both my dh and herself is an everyday teaching lesson & I guess I was hoping that our trip to WDS would be a sort of escape for her to not have to work on all of this. In school all of her classmates know who she is for who she is and are fairly accepting of her TS & it is a comfortable environment for her. When we got to stores, restaurants etc. we work on coping mechanisms for her. We live on Long Island & take lots of trips into NYC etc. so she is not sheltered, but she does get frustrated and tired on doing it and now that HER tics are very obvious it is even more frustrating for her. Putting that into practice is not always easy for a 6 yr old. She even said this morning, "Mommy I know I have Tourette like Daddy and that make us really special" when I asked her what she would do if someone asked her about her tics she then said "I would tell them I don't know why I do it". I asked if she would be able to tell them it is because she has TS and she loudly said NO! So she may be okay with it, but not okay with others knowing it. It is a work in progress and we do attend a TS support group for both parents and kids, as well as going to a private therapist for herself on the TS and anxiety.

Comorbid with her TS is anxiety disorder, and that is where my concern comes in. We have done WDW many many times and always use a touring plan based on crowd predications, EMH's etc and use the fastpasses. Unfortunately, being 6 many of the rides she wants to go on do not offer fastpass and we are going to be traveling over the Columbus Day Weekend (that cannot be changed) so I know that crowds will be high. She seems to be okay when we are walking through crowds, etc, but standing in the close packed lines where you are inches away from others for 40+ minutes may push her over the edge and that is what I am trying to avoid. Her tics are loud and very noticeable so I was just trying to see if a GAC would in any way allow her either a shorter wait on some of those attractions or at least wait in an area that is slightly less crowded. From all of your posts I guess we will test the waters and if it is too much for her then we will hang out at the hotel and avoid the parks.

 

[bookwormde]

Have a good time, WDW is a magical place.

It sounds like your daughters anxiety is socially based which with the supports you are giving her should be manageable, and typically as children get older it gets easier, which is not the case with, for anxiety which is based on fear of extremely low frequency high impact events.

GAC is very good for social or sensory based anxiety.

bookwormde

 

[SueM in MN]

Even during super busy times, there are parks and areas that are less busy than others. Using a touring plan will help you find those places so you can be there, not where the majority of people are.
There are some quiter waiting areas, but a lot of them are just sectioned off from the main room (see the pictures of Circle of Life in the Epcot FAQs thread. When it's really busy, the space next to that quieter space will be full of people, even if the quieter spot is not very full.

 

[bethclayton]

From all of your posts I guess we will test the waters and if it is too much for her then we will hang out at the hotel and avoid the parks.

i don't think you have to resign yourself to avoiding the parks.i would first go with an awesome touring plan and use fp's as part of that (while remembering to keep her entertained/ distracted/ focused on you during lines so she either has fewer tics or isn't looking around to see others staring), and if that totally was not enough and she was having a horrible time, THEN ask her if she wants you to get her a GAC and try it hat way.

i really hope your vacation is awesome and that it is an escape for her. our last one started out so rough- we went over dd's b-day. every year she is extremely anxious in the weeks before her birthday (she always claims she is "excited about her birthday"). this year was no exception, and our first few days at disney were very stressful for us. but the day after her birthday she morphed into her delightful "less anxious" self, as she does every year on that date, and the rest of the trip was awesome. lucky for us, her birthday was at the beginning of the trip, lol.