Newbie to this board and handicaps and need help

[Ityldu]

BF has 9 yo DS (Andrew) w/ Hydrocephalis and Spina Bifida. Excuse me for my ignorance, I'm trying to learn as much as possible about him, but BF gets too emotional when discussing it, so he's not much help. (Cindy, thank you for your posts - very helpful) BF has been divorced 1 year, so he's not really used to taking him out and doing diff. things. I finally talked him into bowling with his 3yo DS and my two boys (6&10). They are all so amazing together and bowling was a huge hit.

I'm trying to talk him into us taking them all to Disney next June, but he thinks it wouldn't be fair to Andrew b/c he wouldn't enjoy it, so I'm surprising BF with a quick trip to Disney for Labor Day weekend so he can see first hand how much Andrew will enjoy it. BF has never been and just thinks it's one big park with lots of roller coasters.

Can you please suggest things that I should show BF to make sure he gets a full understanding/appreciation of what Andrew will experience at Disney? Any and all suggestions on where to stay/eat/ride, whatever would be greatly appreciated.

I'm considering staying in an Epcot resort for convenience, but am afraid two rooms will be way out of our price range.

I should mention, Andrew is unable to walk at all, but is only 32 lbs, so can easily be carried for short time spans. He is capable of eating on his own. He is not incontinent, but must be carried to the bathroom.

Thank you for your help
-debbie

 

[2morrow]

My DS also has SB And hyrocephalus and he is 9 years old. Logan can walk with braces and a walker. We will be going to WDW in February, he will be using his wheelchair the whole time he is 90 pounds so it is not as easy to lift him. Sorry I can't give you much info now but when we get back from our trip I can at that time.
If you have any questions about SB just ask me anytime, I think it is great that you want to learn more about his illness, and I use to be the same as your BF about Logan playing with other kids and taking him to alot of different places thinking how is he going to enjoy doing that!! But then I realized I was holding him back!! We go everywhere now w/o even thinking about how he is going
to do things. Your BF will be surprised on what he can do!!!

From what I read on these boards his son should be able to ride any ride he wants. There are some rides that you just wheel his wheelchair right on. I'm sure someone out there can give you some more info.

-Bobbi

 

[Talking Hands]

As long as he is in a wheelchair he can go on many rides without transferring. Those where he must be transferred to he can be brought to the ride vehicle through the line then lifted into the vehicle. There is wheelchair seating for parades and shows. CHaracters will spend special attention to him.
Be sure to go to guest services for a guest assistance card if he has other needs other than the wheelchair. (like using a hc stroller as a wheelchair, needs to wait out of the sun and heat) You do not need to bring a doctor's note. A simple explaination to the castmember as to what is needed will do.
I am sure the boy will have a great time at Disney and I hope you can convince your BF of this.

 

[Ityldu]

I'm so excited I posted on this board. I can tell already I will have a lot of great ammo to convince BF. Bobbi - I can't wait to hear about your trip. Where are you staying? Our big concern is that sheer effort to get through a normal day wipes him out by 7:30pm, we're very concerned about what he'll be like with all the extra stimulation and heat. We'll definitely take midday breaks and take turns staying with him at resort at night.

 

[Michigan]

Debbie

You can email me at Cindy@provide.net.

I have 2 daughters with Spina Bifida and Hydrocephalus.

Do you know what level he is? Or do you know where the paralysis starts.

 

[2morrow]

Debbie-We are going on a Make A Wish trip so we are staying at the Give Kids The World village, this is where alot of people who go on MAW trips stay at. I don't know how well Logan will handle the days at the parks, he gets grouchy when he gets tired so we will just play it by ear.-Bobbi

 

[amasonmom2four]

I have a two year old son with Spina Bifida and he is going to WDW for the second time in September! Stephen also has hydrocephalus and he is paraplegic. He bops around in his wheelchair and rides tons of rides and LOVES the characters. We went the first time this past March with him. He had a blast! He is able to ride everything except the roller coasters. He especially loved Its a Small World, Poohs Honeypots, the Carousel, Pirates of the Carribean, and Buzz Lightyear's Spaceranger Spin. He is also able to do all the shows.
If you go and are able to take Andrew,he will have the best time!! Tell your BF to try not to worry, it will be a magical trip.
Angela

 

[mamajoan]

A big hug for you!! You are a good, caring woman! Just what this boy needs to help him discover the world... including Disney!

You will rec'v much assistance on this board. The people here are generous and Knowledgable beyond compare.

Best wishes!
Joan

 

[dclfun]

I'm so glad you're around to be in this boy's life! Just remember he's the same as everyone else...a normal little boy who just needs to do things differently and needs some accomodations so that he can enjoy life the same way everyone does. I can't imagine any child not having fun at WDW and as far as theme parks and attractions go...it is probably the most accessible place imaginable. How many of you will be going? I'd suggest that you stay at a DVC property. Old Key West has the most spacious rooms and a larger unit comes with full kitchen, washer/dryer, all the luxuries of home. It sounds like you've received some great advice from parents of children with SB. Kathy

 

[SueM in MN]

My DD has cerebral palsy and uses a wheelchair. She is not able to stand or walk. When she was little, it was easy to lift her onto everything. Now that she's bigger, we tend to stick to more of the rides where she can stay right in her wheelchair for the entire ride. She has been on everything except Space Mountain, BTMRR, Rock N Roller Coaster.
Here's a link to the official Disney page about touring with disabilities. This is a general page, but if you click on the "Mobility Disabilities" link at the top of the page, you will find information about "Mainstream Access" (rides where it's possible to stay in the wheelchair for the entire attraction. You can also find specific information about attractions at each park by clicking on the links for individual parks.

 

[imabusy]

I have a daughter with Spina Bifida that we took to DW when she was 6. Her only problem was not accessible issues but that she was scared easily. We went on the Pooh ride and that was it. She got scared because it went up and down. After that she didn't want to go on any other rides although I did talk her to going on the Merry Go Round. We also had a problem with the shows. Went to two shows and both she sat with her head buried in my shoulder. Handicapped seating is front row and the characters were too close for her liking. She did love the picture time and got her pictures taken with all the characters though. She also loved the parade. She still had a great time and wants to go back.

If you need more information you can contact me at imabusy@msn.com

Debbie
MOM to Sarah, 8