Help an Auntie of a toddler w/ Spina Bifida Please!

2disneyboys

DIS Veteran
Joined
Feb 20, 2009
Hey Everyone! My son works and lives in Florida and my hubby and I were already planning a "long weekend" visit to see him in early May. Long story short, I have many nieces and nephews who I love dearly, but I have a sweet niece River who is about 22 months old. Its random how it worked out, but her mommy and daddy are letting Hubby and I take her with us to Florida. I have been very involved w/ River's care since birth, and she is learning her life adaptions through her therapy etc. We are SOO proud of how far she has come. However, she cannot walk at all (or even stand up or support herself on her legs on her own) (her "army" crawl is literally adorable) She can sit great, and yes, there are some bathroom adaptions we have to take, but it's not anything I haven't already been involved in and am 100% comfortable with. Hubby and I spend a lot of time with River and her 3 older siblings so it's something that we and River are comfortable with. She has spent several weekends with us while her mom & dad have some medical appointments etc. to deal with.

As this with be my first time visiting Disney with a baby with some special "abilities", I have just now started reading the posts etc. in the DISabilities community. I apologize in advance if my questions are redundant, or would better be answered in another way, but I figured I'd post my questions, and then go back to reading various posts. Thank you for your patience with me!

Anyway, we are staying on property and from what I can tell, we can get her stroller flagged as a wheelchair (She doesn't have an official wheelchair being less than 2). Our only purpose in having her stroller flagged would be so we can use it in the lines (As she doesn't have control of her bottom half of her body, she doesn't "help" you hold her like a child who can grip with their legs, so she gets heavy after a little bit of time.) Her Stoller is just a normal single stroller and fits within the Disney Guidelines Most of my questions are stroller related, lol.

1. We were told that we would need to go to Guest Services to have her Stoller tagged (for use as a wheelchair), but my question is does this have to be done at the guest services at the parks, or can we do it at Disney Springs or the Disney Hotel? and do we have to get it tagged every day or just once for the duration?
2. Going through Security with her - do we have to take her out of the stroller, or how is that handled? Our kids are in their mid 20's so it's been at least 15+ years since we had dealt with a stroller @ Disney (We will most likely drive to and from the parks etc. and use her handicap tag so I'm not worried about the buses or other things)
3. Cooler Pack - I'm confused - if I have a small soft cooler for some snacks for her (things like fruit or something like that) are we allowed to bring in the frozen gel packs or a bag of ice?

I'm sure I'll think of more things but we want to make sure her very first trip to Disney World is perfect for her :) Thank you!
 
The stroller-as-wheelchair tag can be obtained at either the Guest Relations location of your first park or at a "blue umbrella" location. Since you have your own (her own) stroller, the tag will be good for your length of stay.

Yes, she can remain in the stroller to go through security. Make sure to get in the right line for strollers. I'm pretty sure you'll need to hand-carry her bags through (like the cooler).

You can bring the small soft-sided cooler with her food. Either a gel pack or ice in a ziploc bag is fine. Just no "loose ice" which would mean just ice cubes loose in the cooler.
 
Just an FYI, when you go through Security at the Stroller/Wheelchair/Scooter line, be sure to tell them that y'all will be glad to hold her while they check her stroller, and then they can "wand" her. They may ask you to even walk through the metal detector with her in your arms instead of using the wand.

When you talk with them, you don't have to give a diagnosis, or anything - just tell them that she has no lower body control, and that she cannot walk or stand independently.

Typically, Security will ask a parent to remove the child from the stroller, and then they will check the stroller without the child. Letting them know that up front means you may have to take a few extra minutes at Security, but once you get used to the procedure, you can get through pretty fast!

They will also need to check her diaper bag, any bag(s) you have as well as her little soft cooler. One thing I do to make things go faster is to use zip-lock baggies to hold things so they can easily see what's in the bag without touching it.

Side note: Is she going to Shriners? When our daughter was a patient there (birth to 18 years) she had several really great friends who were SB patients!
 
I had another thought, do they ever put her in a baby carrier like a sling? My guy may have cp and can walk so it’s not really a comparison. Anyway, you can carry a baby through the metal detector at the airport in a baby carrier. Then they push the stroller through and wand it.
 
Thanks for all your help - I spent a long time yesterday on the Disability boards and you guys have all shared some great tips. I appreciate your help and and looking forward to the magical time with her
 

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