CP, Sensory Integration Disorder, Apraxia

[Kellea]

I'm taking my son age 7 for his first Disney trip. He has CP, apraxia, sensory integration disorder and febrile seizures. He wears bilateral AFO's on his legs for the CP. I wasn't sure if it was recommended to get a letter from his doctor prior to our trip. I'm concerned about the amount of walking. I've considered bringing a stroller but I'm worried he won't want to use it and that takes away a piece of luggage. My MIL also is bringing her CPAP. We are staying at Ft. Wilderness and wondered if anyone could share insights or advice. I'll be bringing his snacks but he's really excited about some of the kids buffets during our character dining.

 

[SueM in MN]

I'm taking my son age 7 for his first Disney trip. He has CP, apraxia, sensory integration disorder and febrile seizures. He wears bilateral AFO's on his legs for the CP. I wasn't sure if it was recommended to get a letter from his doctor prior to our trip. I'm concerned about the amount of walking.

Follow the link in my signature to the disABILITIES FAQs thread. In post #6 of that thread, there is information about Guest Assistance Cards. (GAC)
You do not need a doctor's note to request one. Keep in mind that using a GAC will not shorten the distance walked. The average person walks between 3 and 9 miles a day at WDW, so he will need a stroller or wheelchair. There are also many attractions where you need to stand for at least the length of the show. With a stroller or wheelchair, he would have a place to sit while he waits.

I've considered bringing a stroller but I'm worried he won't want to use it and that takes away a piece of luggage.

A mobility device doesn't count toward your luggage count for the airplane and you don't have to pay a fee to bring it. If you want to have one, but not bring it with you, there are some places listed in the disABILITIES FAQs thread in post #2 that rent special needs strollers and/or pediatric wheelchairs.

My MIL also is bringing her CPAP. We are staying at Ft. Wilderness and wondered if anyone could share insights or advice. I'll be bringing his snacks but he's really excited about some of the kids buffets during our character dining.

If you are concerned about traveling with her CPAP, check out the post in the disABILITIES FAQs thread about air travel. The TSA people will want to examine the CPAP machine, but travelers have them frequently, so it will not be unusual for the TSA people to see one. You do want to hand carry that in your carry on bags, not checked bags.

 

[ireland_nicole]

Sue gave you most of your answers, but I wanted to add that although you do have to carry the CPAP, it also does not count towards your luggage limits.

 

[Kellea]

Thank you so much! He normally walks everywhere but he's never walked that much and we will be there for a solid week. I think he would fit into a regular stroller...he's tiny but tall. Thats why I was thinking I would need a note from the doctor to state that it is a mobility device so it wouldn't count towards luggage. MIL stated that they only sent tags for one per person for the luggage transfer to Disney. We travel alot with the CPAP but I was thinking about distilled water for it. I guess we could just use bottled water in a pinch. The FAQ was very very helpful and I appreciate the time that you took to develop it!

 

[SueM in MN]

Thank you so much! He normally walks everywhere but he's never walked that much and we will be there for a solid week. I think he would fit into a regular stroller...he's tiny but tall. Thats why I was thinking I would need a note from the doctor to state that it is a mobility device so it wouldn't count towards luggage. MIL stated that they only sent tags for one per person for the luggage transfer to Disney. We travel alot with the CPAP but I was thinking about distilled water for it. I guess we could just use bottled water in a pinch. The FAQ was very very helpful and I appreciate the time that you took to develop it!

The airlines have not been counting gate checked strollers for anyone - special needs or not. So, I don't think you will have a problem.
The DME tags are only put on the luggage you want DME to handle for you - not things you carry on.

As for distiller water, if you do a search for CPAP, you will find this has been discussed a lot.
Some people find they don't need rhe humidity, some use bottled water, some tap and some have bottles of distiller water delivered.
You can carry it on board as a medical liquid, but seeing that water is kind of heavy, that's not very practical. Some people have filled 3 ounce bottles and packed them into their 1 quart bag for allowed liquids - that way they didn't have to do anything special.

 

[Kat77]

I questioned this when my DS was 7- we ended up needing a stroller! WDW strollers are pretty big so do not worry he won't fit. Let your son save his energy for the good stuff rather than wearing him out with walking.

 

[bookwormde]

Since for most of our kids with sensory diffences, being tired can make them much more accute, being realistic about the amout of walking is important. He may say no now to a mobility deveice but if he really wants to keep going he may well change his mind, so definetly bring it.

There are also "cooler" looking rental "strollers" in that you can find some links to above.

Have a great time

bookwormde

 

[happymommy]

With my kids, I brought our old full size (lightweight) stroller until DD was 7 and DS was 9. They did share. My DD gets tired out easily, DS has asthma (and ADHD, very severe).

So, I would definitely bring a stroller. It's hard for many kids to walk that much, and in the evening after a long day it's nice to have the stroller for them to rest in.

Also, I get a GAC for my son. I tell him it's due to his asthma (he does get worn out sometimes, and can't do too long in any park) but really, his ADHD is so severe (not autistic, although he's been extensively tested a few times). He has an awful time waiting, and it's just so hard in a normal line. It's good if he can rest (and be distracted with a DS or his Ipod). They've never asked for a doctor's note.

I bring a bag of meds and his nebulizer as a carry-on, and know now that it can't count toward your normal carry-on luggage. Darn it, I didn't know that earlier! We only bring carry-ons!

I hope you have a great trip!

Oh, and I've shipped a box of snacks before (a few times), and used garden grocer (once), and done a towncar with a stop (most times). Either way, it's good to have familiar food in the room!

 

[Kellea]

I bring a bag of meds and his nebulizer as a carry-on, and know now that it can't count toward your normal carry-on luggage. Darn it, I didn't know that earlier! We only bring carry-ons!

I hope you have a great trip!

Oh, and I've shipped a box of snacks before (a few times), and used garden grocer (once), and done a towncar with a stop (most times). Either way, it's good to have familiar food in the room!

Do you just have it shipped to your resort? Where do I find the information on how to do this? We go thru apple juice like its going out of style and I was gonna check one bag with just his snacks and juice stuff.

I'm gonna google Garden Grocer too. Were you happy with the service?