Rett Syndrome DW Successes (and Failures)

[Magic Magic]

Would love to hear about successes (and failures) from anyone who has taken their Rett daughter to DW. We took our daughter when she was 3 (she loved it), but she is seven now, and want to see if anyone has any tips. We have an upcoming June trip. I am especially curious if anyone has tried Soarin, and if I could sit next to her and help hold her upper body stable. Thanks in advance!

 

[lanejudy]

Welcome to the disABILITIES Forum

I'm not sure I've read anyone on here mention Rett's Syndrome recently, but that doesn't mean they aren't here. Many of the more rare diagnoses have similar challenges. Someone may be able to give you some suggestions based on similar experience.

Specific to Soarin' -- the Epcot - FAQs and Disability Guide has a lot of information about the rides there. Post #16 has many picture of Soarin' and if you Google Soarin Disneyworld you can find a lot more pictures. Does your daughter have any upper body control? I would think she'd need a minimum ability to hold herself upright even with you next to her. There aren't shoulder harnesses, it's just a seatbelt, though there is an extra strap to create a 3-point seatbelt required for shorter children. Hopefully someone else will share their related experience on this ride.

Enjoy your vacation!

 

[SueM in MN]

I know 3 young ladies with Rett. They are all pretty different in their abilities, likes and skills.
It would be helpful if you could tell us a little more about your daughter.

 

[Magic Magic]

Thx for the kind welcome! Well she's quite adorable, and loves princesses Belle and Ariel. She is in a wheelchair and wears arm braces and back braces. She can bear weight standing up with full support. We are going to CRT and getting princessed up at BBB, plus Akershaus. I think she will like enchanted tales with belle. Maybe the barnstormer? When she was younger, she enjoyed Peter pans ride and buzz light year. I'm thinking she would like soarin... I generally have been able to sit next to her and hold on to her and keep her steady.

 

[Nevada Jen]

1. Typing on my phone and can't type a ton. My daughter is very similar to what I understand rhetts to be. I will try to pm you tomorrow with some tips. But I think she will be fine on soarin. Probably fine on all rides except space mountain assuming she can sit on the floor in a tripod position and throwing your arm across her is an option that would generally hold her upright. And assuming she is not fragile. I actually think barnstormer is pretty rough. YouTube is a good place to look for videos of the rides to get ideas.

 

[sarahsmom73]

My daughter has Rett.. She is 8.. We are headed down on 3/25 for a week! We have gone several times because it makes vacation easy for us.. We haven't tried soarin yet.. Maybe this trip!!

 

[Magic Magic]

Have a great time! Love to hear how it went and if any tips come to mind after your trip (feel free to PM). Thanks and enjoy!!!