Tourette syndrome

[Ferrante8]

Hello all !! I am looking for a little advice from anyone who has gone to WDW with someone with tourette syndrome. We will be there in August, my 6 yr old son was just diagnosed with tourette syndrome a little over 2 months ago. Since these involuntary movements started he went from being a care free boy to very self conscious boy when in public. We know when he just needs a moment. He will grab my hand, or ask for us to wait a minute( while at the store or anywhere out and about). My other children are great with this as well, they always let him know to take his time. My questions are... Has any encountered any negative people towards them while there ?? We have here a few times at a store and even a substitute teacher at school. Also, has the person with tourette's had higher anxiety while at Disney ?? If so, any suggestions for us . We usually hit the parks by rope drop or shortly after and only stay until about 5, little feet prefer the pool the rest of the evening ! We do have free dining so we will have 1 sit down meal a day( this is a plus to let him take a break) ! Any info would be great! TIA

 

[AddictedtoDoleWhip]

While I do not have Tourette's Syndrome I do have a lot of involuntary muscle movements and have had them since I was a baby (I think it's tied to one of my other disabilities.) Mine tend to happen when I am a) extremely, beyond excited b) extremely nervous or anxious. They also happen when I am "off in my own little world"

Even though I have not been to WDW, when I have been at DL I don't believe anyone has treated me oddly because of it. I do a lot of hand flapping. leg tapping, bouncing and walking on my toes which may look odd to some but no one says anything. Whenever I have them, my mom taught me to say "oh i got a chill" quite often, even if its 105 degrees out.

I think you should be fine! People may just think he's extremely excited to be at WDW, but go slowly if he feels more comfortable in a slow moving environment and doesn't like to be rushed to do things. Even though I do not have TS, from my experience at DL and other parks I tend to be a bit overly excited and nervous at the same time and my 'muscle movements' would be uncontrollable at times, it doesn't bother my mom and no one was paying much attention to me. I don't know if he has vocal tics, but my friend told me that people looked at her oddly when those happened, no one said anything but it was more noticeable.

I hope you and your family have a lot of fun! I tend to believe that most people may not be paying that much attention to others that much (at least I don't, but I've been told I'm mostly off in my own little world.)

 

[Ferrante8]

Thank you for sharing.. My son does a lot of foot stomping, neck and facial tics. People tend to think he is being naughty when we are out in public because he needs to stop and stomp a foot repeatedly, he also does a lot of sniffing noises. Since this all started we ( family and friends) have never made an issue of it, but he gets very nervous and tries to hide between us at times when in public when his moves pick up. It doesn't help that a few people ( strangers) have made comments to him about behaving. ( of corse I jumped in on that) !! We are still learning about TS and how some moves change and others are the same and learning what works with the anxiousness that has come with all of this. So thank you for sharing your insight with me !!

 

[CDNLADY]

Hi my first advice is just treat him like he is a normal child! My son and husband have tourette's and just ignore most of it.. My son was diagnosed at age 2 (He is 17 now ) but we knew what to look for not only does my husband have it but his dad his sister and nephew . Been there, will all the ticks jumps ect. best thing to do is make sure they are not over tired other then that just enjoy your day. I don't even notice anymore when son or husband ticks act up, My son when he was 6 had skipping every 10 feet as a tick ,loud sounds , eye twitching, counting silo's ( we lived in the country) on the way home from school shopping ect. Sorry this might not be helpful but really the best advice is not making him feel like a outcast or " special", Good luck and just try and relax

 

[MSSANDRA]

My nephew has tourette and goes to WDW at least once a year and has since he was about your sons age. He also has a lot of anxiety disorders but they seem BETTER at WDW than anywhere else. One thing that helps him is the reminder that no one at WDW knows him! My DN would become upset if his ticks were out of control at school, and the upset feeling made the tick worse! I would work with your little one on appropriate responses to stares or remarks and also arm your older kids with these as well.

Other things that helps him in general:

Avoid all caffeine:..including chocolate... sorry but it makes a huge difference
Stay hydrated
Avoid or limit red dyes in drinks and foods...this is another of his triggers.

Maybe work with him on some relaxation/breathing exercises...these are helpful to him when he gets very stressed!

 

[LockShockBarrel]

I'm not entirely sure what you'd call my thing...I guess it's a tic but it only happens maybe twice a week. Occasionally its more frequent but I haven't figured out any pattern to it. I quickly turn my head to the right and my shoulder jerks up, I can usually feel it coming on about 30 seconds beforehand, and its more noticable if I try to stop it. Sometimes there's a small high pitched (as compared to my speaking voice) grunt that happens with it. All that being said, I find if I don't make a big deal of it, no one else does either. They notice for sure, but not enough to ask or say anything. I'm sure it's no where near what your child goes through but I still would say if he can get to the point where he can feel less self conscious about it and just go about whatever he was doing prior to the behavior, maybe less people will react. I definitely can see how at that age though people would immediately assume its misbehavior.

 

[OwlDisneyGirl]

We went to WDW 2 years ago with our kids, and it was the first time we'd been since DS1 had been dx with Tourette Syndrome.
I cried the first night there. We had gone to Downtown Disney (weren't starting the parks until the next day) that night and his tics were out of control, and bigger than anything I'd ever seen before. I was, for the first time in all of our trips, dreading the rest of the week there.
I can say this, it turned out so much better than I could have hoped for after that first night. He had much less issues in the parks, and we adapted how we toured. By the end of the first day in the parks, I felt so much better.
We only went to Downtown Disney one other night that week, and his tics got huge again there. Not sure what it was, but something about that area really ramped them up.
He still had numerous tics in line and we did get some looks, but cast members were very helpful and we were pretty much able to get through the whole week without feeling "odd" at all. In fact, it was one of the best trips we've ever taken there!
Now, I'm nervous about our upcoming trip this summer. DD and DS1 both have TS (DD appears to have had it when we went last time, but we didn't fully realize it - hormones have kicked it into gear now). Plus, with another condition she has, her medication for that doesn't let her sweat. Add in a 2 yo that has his own "issues", and is, well, 2, and it's going to be an interesting trip!
I will say this. After our last trip there - and how fantastic it turned out - I was thinking we may never go anywhere else again!

 

[buffettgirl]

one of my best friend's son has Tourette Syndrome and we had just been talking about Disney (they just returned). She said he had less tics there than she's ever seen. (he's a very loud throat clearer and head snapper - can't really explain it better than that) She thinks it had something to do with his brain being SO overly occupied with everything around him that it somehow shut itself off. She was anticipating the total opposite. Thinking that all the stimulation around him would trigger it in full force as it usually does when he's in unfamiliar or stressful situations.

Anyway, she said that she feels like half the time no one even notices and the other half of the time people know what's going on and recognize it for what it is (especially after the first loud throat clearing).

 

[Ferrante8]

Thank you all so much for the advice and insight with this !! It's nice to hear of other experiences with TS and vacationing. Maybe I was worrying myself for nothing. We / I , haven't had an opportunity to talk to anyone with tourette's or meet anyone so I still have so many unknowns. I know everyone's experiences are different but it's great to have a little advice !!

 

[OwlDisneyGirl]

Thank you all so much for the advice and insight with this !! It's nice to hear of other experiences with TS and vacationing. Maybe I was worrying myself for nothing. We / I , haven't had an opportunity to talk to anyone with tourette's or meet anyone so I still have so many unknowns. I know everyone's experiences are different but it's great to have a little advice !!

Being in NY, you have a great resource in the TSA-USA.org (they're based out of NYC). Every other year in April they have a big conference in Washington, D.C. I really wanted to go this year and couldn't (it's only the second one since DS was diagnosed).

Also, TSA-USA sponsors a dinner each year during the WDW marathon in January. I haven't gotten to do that either, but it's on my list of to-do's.

I know a few people with Tourette's. DD has a friend with it, so does DS. A friend from college has a nephew with it and another friend from college may have just had a son diagnosed with it (haven't heard back after her son's appt).

When your child is older, there are some great camps for kids with TS. We're waiting 1 more year before looking at sending our kids. Having heard from one person (her son has been twice), she said it was the best thing they ever did.

And, as a neat little note, DS went to his first concert last month and got to meet James Durbin! My DH said James Durbin was great! My son is still beaming from that meeting!

 

[MedicGoofy]

My brother was diagnosed with tourette's as a young young child. I can't remember a time when he didn't have motor and/or vocal tics. There were/are times they are worse, and times when they are better.

I know it was very hard on my brother as a child. Not knowing how to control the tics, and not understand how to relax himself, made it difficult in school and with friends.

We took several trips to Disney when we were younger, as well as to other vacation spots. He always had a great time. He found it was a place that he didn't have to worry about what other people thought. He would see them for a short time, and then not have to worry about it. They weren't his friends (peers at school), teachers, family, community people. No one that he might see the next day walking around. He could just let loose and not care. And when you get to be that relaxed, he found his tics weren't that bad.

When he started to age and become an older teenage, he became to realize that he could gain some control of the tics. When in public, could some what hold it back, then when alone or with close family, let it go. They would be bad till that 'urge' settled. And he is still like that now. He finds when he is really stressed, with work or family stuff, his tics can become worse. There are times that his tics disappear altogether.

You will start to find, as time goes on, what works and what doesn't. Rest, is always important. As it is for anyone. But, someone with tics, will always be better, when their body is well rested. The less stress they can be under, will help as well. Some will say no caffiene, we tried that a few times with my brother, and it made no difference. He drinks his pop all the time, and currently, he is tic free. He did magnesium (?) pills for a while. Seemed to help.

Check out support groups. Will be a GREAT source of information. I remember my mom being hugely involved for years in them. Not so much anymore as my brother is now almost 30.

Have a GREAT trip to Disney