Possible MAW trip questions

[QueenMomof2]

I everyone I'm new to the board and honestly don't know a whole lot about WDW.

Yesterday I got a phone call from MAW and our daughter has been submitted so they are sending the paper work and then will contact her Dr. I'm not sure she will qualify but I'm starting to think about it just in case.

I know she is going to ask to go to WDW. She wants to be a Princess, what 4 year old little girl doesn't , and though she doesn't say much that you can understand she does say "Go to Mickey Park (WDW) to Princess Castle".

Has anyone been to WDW with a child who suffers from a seizure disorder? What types of things were they able to do?

Safety is a HUGE concern for us since she has tonic clonic, and Atonic seizures as well as Status ones. Her Partial seizures are more of a concern sensory wise and the fact that she will need to take lots of breaks

I'm just a little worried that because of her seizures she might not be able to go to WDW since the Dr. has to okay the location also.


Any help or direction to where I might find info would be awesome!

I am in tears at the possibility that she might get a Wish, mixed emotions. Even just being considered is a true blessing.

 

[Cheshire Figment]

Hi and to both DisBoards and disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #3 in the FAQs has a lot of specific information arranged alphabetically; look for Make A Wish and Other Wish Trips and there will be about 20 links that can help you.

Or, if you want an easier route, click on the link in my signature.

And, of course, as you have specific questions ask them; that's because most of us here have been in a "been there, done that" situation and are here to help.

 

[QueenMomof2]

Thank you so much for the warm welcome.

I'm checking out the FAQ threads, there's so much info and lingo I think it's going to take me a while to figure it out. The MAW trip reports are AMAZING! I've been crying reading them all, good cries which is nice for a change.

 

[mechurchlady]

You would take your stroller with you on the plane. At a park you would get a GAC "stroller as a wheelchair" which would allow you to take a normal stroller anywhere a wheelchair goes even if the signage says no strollers. You would be able to take the stroller into lines thus saving the kid the walking. Strollers also are less stressful on kids as it keeps people from them thus they do not get accidental pushed and shoved. Helps mom as she can load up the stroller with supplies.

The Baby Center has changing tables and private areas for feeding and stuff. The nurses station will store for you extra medical supplies and provide cots for resting.

If she has a special diet then check that section as the table restaurants can make pureed foods, low salt, allergen free, and other dietary stuff. Make sure she wears the MAW button as CMs will go out of their way for MAW kids. Most love kids and try to make their day special.

http://pages.prodigy.net/stevesoares/
He has a list of street performances in the park that you can check out.

Planning is key to a great trip. If a ride is closed or someone is sick then you rewrite your current plan using your vast storehouse of park knowledge. Know what rides you can go on and what she would love. Let her lead you on this trip. If she wants to ride Dumbo 4 times then let her.

http://www.wdwinfo.com/wdwinfo/height.htm
Put in her height to see what rides she cannot ride.

http://www.wdwinfo.com/Just_for_kids/touringMK_kids.htm
http://www.wdwinfo.com/wdwinfo/themeparks.htm#themeparks-nav

On your computer you can make a file in bookmarks/favorites. Then make subfolders as needed such as restaurants, MAW, and maps. Then as you find stuff you can bookmark it and label it for future use. I did that on my trip to San Antonio. I had restaurant file, transportation file, hotel file, convention file, and sightseeing file. I knew where to get online cheap and where the great restaurants were. I love bookmarks.

 

[QueenMomof2]

Those are great links thanks so much. She sat on my lap with me while we went through some of the pictures of the rides and parades. The video of the barber shop quartet singing was a HUGE HIT.

The stroller is a great idea I can't decide whether we would bring our Phil & Ted's or just rent or buy a cheaper double there. The stroller is her "safe place" and is a must when she is having a hard day or just get's overwhelmed.

We're not huge ride people, my DH and I, so really I don't expect to do much else besides the little kids rides and all the parades and character meets.

She'll have her helmet so that will give us some peace of mind.

 

[mechurchlady]

Bring her happy place with her. Instead of getting a stroller that is not comfty just bring the stroller. You take it to boarding and tell them you need to gate check the stroller. They will then let you transfer to an aisle chair and take her to her seat if you want. ANy medical supplies like meters, monitors, testing equipment, and the stroller is free. Make sure you bring a pillow case and strip anything that can get lost like trays or damaged. Take it with you onto the plane and it will count toward onboard luggage. Make sure you bring extra stuff like diapers and special foods. You need extra in case you get delayed.

I am glad she had fun with the videos and don't forget to check the meet and greets. The parks are made so that everyone can find something fun to do.

hugs and chocolates
Laurie

 

[bookwormde]

Hope you have lots of time here is a link to a couple of wish tripper’s threads

http://www.disboards.com/showthread.php?t=1606643

I have read that a lot of the trips are coordinates though Give Kids the World so you might want to look at their site also. Once you are approved you will get a lot more info from you sponsoring organization

http://www.gktw.org/


bookwormde

 

[DisDreaminMom]

I hope it works out for you to go to WDW. Just so you know- you don't have to ride a single ride to have fun there. It's just seeing so many beautiful things, the characters, buildings, the sunshine, the flowers, and the food! Seriously, just walking around looking at things is wonderful. Don't put "riding rides" pressure on yourself. DD will just soak it all in and you will have the best time!

 

[QueenMomof2]

Thanks so much for all the help everyone.

It's always been my dream to take the kids to Disney for Christmas so my DH and I were planning on doing a 2 week Christmas vacation when they are 7 & 8 to WDW. It's a long ways away but if she doesn't end up qualifying for the MAW trip I'll just use all this info for that trip.

I'm just waiting for the paper work to get here, they sent it on Monday from our local MAW so it should get here soon.

We're definitely slower paced people. LOL We enjoy going at our own speed and really just reading the kids and making sure we are doing what they need/want. So that would definitely be a motto for a MAWT for us.


I've been looking around and saw the pics from the BBB at MK. (I'm getting the abbreviations down ) I know DD would LOVE LOVE LOVE being a Princess I'm just not sure that with her SID that she could handle it. If it was not busy and loud then she might be able to.

Then I thought it might be fun and help her if we did it together, her and I, I could just get my hair done up too. Of course I would look funny being a Princess at 30.

 

[mechurchlady]

As for BBB and other stuff you can explain to a CM that she has limitations and make sure you take some ear plugs for that. Ear muffs are better but ear plugs work good. As for being a 30 year old princess I do not know if they do adults but if you love your kid you will do some crazy stuff.

Remember that Christmas will be colder and busier. She would love the Christmas stuff. Do the MK kid stuff first thing in the morning then take the afternoon off or watch shows.

 

[QueenMomof2]

Does anyone know what the rules are regarding taking medicine, liquid and pills, on the plane? Or where I could find the info.

We need to have the medicine with us in our carry on because she is currently taking her meds in the afternoon also, but that might change since we will be trying a new med soon.

I'll also be asking her Neuro for a rescue med when I talk to him next, she had another Status seizure yesterday and stopped breathing, so that will need to be with us where ever we go.

 

[bookwormde]

Here is a link to TSA

http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm

http://www.tsa.gov/travelers/airtravel/prohibited/permitted-prohibited-items.shtm

bookwormde

 

[QueenMomof2]

Thanks so much for the links I bookmarked them those will be very helpful.

 

[j-me]

YOU WILL LOVE IT!!!

Our son is tube fed, meds, wheelchair bound, seizures and he had a BLAST!! We took his meds in their orgininal bottles with us on the carry on... they were pills and a small lunch sack for his tube feedings. They didn't give us any hassle due to his disablities. All other meds (not narcotics) we packed in the suitcases and we got it find.

You will WANT TO stay at Give Kids the WORLD!!!! I was so glad we did! It is ONLY for wish families and you will be spoiled rotten! They even had a hosptial bed brought to our condo just for our son. I won't spoil all the suprises but you have to stay there.

We went in May at MOther's day and it was great. Summer would be to hot for us. But no matter when you go as a Wish Child you will have no problems with lines.
At Disney we used the First Aid stations in each park to lay our son down or change him. Better then the normal bathrooms. And now they have a SPECIAL WISH LOUNGE...and it is amazing. Tv's movies, big couches, snacks and a special pin for being a wish family You can visit it to give her a break through out the day.

Any other questions.. I'd be happy to help out. We have returned for a second visit and it was a blast.

 

[QueenMomof2]

YOU WILL LOVE IT!!!

Our son is tube fed, meds, wheelchair bound, seizures and he had a BLAST!! We took his meds in their orgininal bottles with us on the carry on... they were pills and a small lunch sack for his tube feedings. They didn't give us any hassle due to his disablities. All other meds (not narcotics) we packed in the suitcases and we got it find.

You will WANT TO stay at Give Kids the WORLD!!!! I was so glad we did! It is ONLY for wish families and you will be spoiled rotten! They even had a hosptial bed brought to our condo just for our son. I won't spoil all the suprises but you have to stay there.

We went in May at MOther's day and it was great. Summer would be to hot for us. But no matter when you go as a Wish Child you will have no problems with lines.
At Disney we used the First Aid stations in each park to lay our son down or change him. Better then the normal bathrooms. And now they have a SPECIAL WISH LOUNGE...and it is amazing. Tv's movies, big couches, snacks and a special pin for being a wish family You can visit it to give her a break through out the day.

Any other questions.. I'd be happy to help out. We have returned for a second visit and it was a blast.

The first aid stations for changing are a great idea I was wondering how we would do the potty thing. They have both started to potty train, our 2yr old is totally into it but DD has been on and off potty training for over 1yr now.

So we do still need a space to change her on most of the time.

So from the info on meds I was planning on putting them in ziploc baggies that way they can see them, the one bottle is dark so I guess they might need to check that one out, the others are just pills.

The kids and I check out a MAW TR this morning and they saw the pics of GKTW. They LOVED it. We are actually just starting to redo DD's room in an Alice in Wonderland theme so it was so funny to see the theme there.


I really hope the Dr. okay's the trip, we could use a nice family trip where we really don't have much to worry about. I can't imagine that feeling of just getting a little respite from it all, I think I might cry the whole trip.

 

[maroo]

Thanks so much for all the help everyone.

It's always been my dream to take the kids to Disney for Christmas so my DH and I were planning on doing a 2 week Christmas vacation when they are 7 & 8 to WDW. It's a long ways away but if she doesn't end up qualifying for the MAW trip I'll just use all this info for that trip.

I'm just waiting for the paper work to get here, they sent it on Friday from our local MAW so it should get here soon.

We're definitely slower paced people. LOL We enjoy going at our own speed and really just reading the kids and making sure we are doing what they need/want. So that would definitely be a motto for a MAWT for us.


I've been looking around and saw the pics from the BBB at MK. (I'm getting the abbreviations down ) I know DD would LOVE LOVE LOVE being a Princess I'm just not sure that with her SID that she could handle it. If it was not busy and loud then she might be able to.

Then I thought it might be fun and help her if we did it together, her and I, I could just get my hair done up too. Of course I would look funny being a Princess at 30.

Wow...awesome thread!

On the subject of BBB...

I would definitely suggest doing BBB at Downtown Disney. It is a LOT bigger at Downtown Disney and not as cramped. At the Castle, it is in a small space and it is loud and crowded in there.

I would also suggest calling and finding out what would be a "down" time for them. They have certain times of day that are crowded due to certain meal times or parties or something. That way she can really enjoy the experience.

I do think that they will work with you on that stuff...

 

[SueM in MN]

Has anyone been to WDW with a child who suffers from a seizure disorder? What types of things were they able to do?
Safety is a HUGE concern for us since she has tonic clonic, and Atonic seizures as well as Status ones. Her Partial seizures are more of a concern sensory wise and the fact that she will need to take lots of breaks

I'm just a little worried that because of her seizures she might not be able to go to WDW since the Dr. has to okay the location also.

In the disABILITIES FAQs thread, there is a link to a thread about Epilepsy at WDW.

My daughter has seizures (tonic-clonic) and has been to WDW many times. The main things her neurologist said was to avoid dehydration, keep to the medication schedule and avoid getting sleep deprived.
I would suggest keeping her in the stroller while you are waiting for attractions to avoid her falling if she has an atonic seizure. While in attractions, you will be sitting with her and/or she will be sitting between you and someone else from your group.

Hopefully, she won't have any status seizures while you are there, but any CM can call someone for medical assistance for you. You don't need to go to First Aid - if she has a seizure and you need assistance, EMS people will come to you. They can transport to the hospital if needed. If she just needs to rest, there is a First Aid station in every park where she can go to lie down on a cot.

I don't know of any reason the doctor would say WDW was out, other than if he/she felt the travel to get there would be a problem. There isn't anything about the parks in particular that would make them a bad choice.

Does anyone know what the rules are regarding taking medicine, liquid and pills, on the plane? Or where I could find the info.

We need to have the medicine with us in our carry on because she is currently taking her meds in the afternoon also, but that might change since we will be trying a new med soon.

I'll also be asking her Neuro for a rescue med when I talk to him next, she had another Status seizure yesterday and stopped breathing, so that will need to be with us where ever we go.

You always want to carry on any medication, plus any items that would be important to have or difficult to replace. Pills don't need to be separated out or shown to the TSA agents. Just liquids (and they don't count against your 3 ounce liquids).
If you lose the links to the TSA site that were posted, most of the links people posted are in the disABILITIES FAQs thread.
People just pulled links that would be especially helpful out to make it less overwhelming to you.

The first aid stations for changing are a great idea I was wondering how we would do the potty thing. They have both started to potty train, our 2yr old is totally into it but DD has been on and off potty training for over 1yr now.

So we do still need a space to change her on most of the time.

This is a picture of one of the rooms in First Aid at Magic Kingdom. You can use these cots for resting or for changing. They also have some tables that can be adjusted in height.

There are also Companion Restrooms at each park. If you go to the EPCOT FAQs thread near the top of this board, there is information and pictures of the Companion Restroom in Epcot. There is also information about whether or not that restroom has a changing table and how big it is.
I also have pictures and informaion about the Companion Restrooms in the other parks, but haven't had time to fix it and post it yet.

 

[QueenMomof2]

In the disABILITIES FAQs thread, there is a link to a thread about Epilepsy at WDW.

My daughter has seizures (tonic-clonic) and has been to WDW many times. The main things her neurologist said was to avoid dehydration, keep to the medication schedule and avoid getting sleep deprived.
I would suggest keeping her in the stroller while you are waiting for attractions to avoid her falling if she has an atonic seizure. While in attractions, you will be sitting with her and/or she will be sitting between you and someone else from your group.

Hopefully, she won't have any status seizures while you are there, but any CM can call someone for medical assistance for you. You don't need to go to First Aid - if she has a seizure and you need assistance, EMS people will come to you. They can transport to the hospital if needed. If she just needs to rest, there is a First Aid station in every park where she can go to lie down on a cot.

I don't know of any reason the doctor would say WDW was out, other than if he/she felt the travel to get there would be a problem. There isn't anything about the parks in particular that would make them a bad choice.

You always want to carry on any medication, plus any items that would be important to have or difficult to replace. Pills don't need to be separated out or shown to the TSA agents. Just liquids (and they don't count against your 3 ounce liquids).
If you lose the links to the TSA site that were posted, most of the links people posted are in the disABILITIES FAQs thread.
People just pulled links that would be especially helpful out to make it less overwhelming to you.

This is a picture of one of the rooms in First Aid at Magic Kingdom. You can use these cots for resting or for changing. They also have some tables that can be adjusted in height.

There are also Companion Restrooms at each park. If you go to the EPCOT FAQs thread near the top of this board, there is information and pictures of the Companion Restroom in Epcot. There is also information about whether or not that restroom has a changing table and how big it is.
I also have pictures and informaion about the Companion Restrooms in the other parks, but haven't had time to fix it and post it yet.

Thank you for the first hand experience it's so great to hear from someone who has BTDT.

You make me feel SO much better with the info on the CM's being able to call people if something should happen. It sounds like really they have everything taken care of at WDW & GKTW, which I figured would be the case.

After reading more of the info here I can't see a reason either why her Neuro would say no to WDW.

We've switched meds again, I talked to the Neuro yesterday, and she will be having an MRI soon to see if she is having mini strokes (she has been having "episodes" that include paralysis for hours) her pre MRI is Feb 10th. Then in Feb she will go for a long term VEEG. So we have A LOT coming up.

So I really do see the referral as a blessing even if we don't get a MAW trip. It's been a nice distraction for me with everything that has been going on the past couple of months.