Questions re travel, ASD & Disneyworld

[Kady]

We (dh, myself and 3 boys) are travelling to Disneyworld Dec 1-10/08. We are driving to Minneapolis, staying overnight and flying out Dec 1st very early in the morning. We are staying offsite in a condo or vacation home (depending on if the inlaws decide to come along). We figured this would be best as it gives us more room and a quiet place for downtime away from all the excitement.

So...my questions for all you experienced travellers are:

I understand that the GAC is available if needed. I am not sure if we would need it but my worries are that (a) my son has very sudden urges to have a bm and there is no warning literally; would one of us be able to leave the line to take him to the washroom and then come back (he is not trained to use the toilet to pee yet )? and (b) if we do not have a GAC are we able to request seats close to an exit in case we have issues? my fear is being trapped in a show and he wants to leave and has a massive meltdown. I don't think there are really any other issues we woudl have with him. I understand that the lines are shorter at that time and he is pretty good at waiting with a lot of explaining (over and over and over) and if we let him know well in advance that there will be lines and he will have to wait.

My son also has epilepsy...controlled with medication. My questions are:

Travelling with medication. He is on valproic acid and carnitine (for ammonia levels) and these are both liquids. We of course will be packing these in a carry on. I have read and heard conflicting information about liquids on airplanes. Is it correct that the max amount is 4oz. per bottle and it must be packaged somehow in a plastic ziploc (i am assuming like a freezer bag)? We have heard from others that they have travelled with their regular size bottles and not had a problem. Also do we require a letter from the dr stating that is a legitimate prescription or is the label on the bottle sufficient? Our other concern is with the lights on rides etc. triggering a seizure. We have no experience with this at all as this would be our first trip with him somewhere like this. Is this something to be concerned about?

Thank you all so much for your information/tips! We are so excited about this trip and our ds (who is a Star Wars freak...obssessed and I know all you ASD parents know what I speak of) and can't wait to see Darth Vader. Hopefully he will be there! YIKES!

 

[ntsammy5]

can't wait to see Darth Vader. Hopefully he will be there! YIKES!

I'll let someone else answer your other questions who knows what they're talking about, but Darth Vader is always near Star Tours in Disney Studios. They do a regular show where Jedi Knights are trained (perhaps your DS could participate) and Darth shows up near the end. Enjoy your trip!

 

[jencav5]

If I were you I would still go to guest services and get a GAC. They will determine your need and help you as needed. You can then determine whether the GAC is useful to you or not. At least you will have it if needed. Also, if you get a GAC, you don't have to get one for every park-it is good for all the parks and you can also ask them to write the dates for your whole stay so you don't have to get one everyday.

 

[3DisneyNUTS]

We (dh, myself and 3 boys) are travelling to Disneyworld Dec 1-10/08. We are driving to Minneapolis, staying overnight and flying out Dec 1st very early in the morning. We are staying offsite in a condo or vacation home (depending on if the inlaws decide to come along). We figured this would be best as it gives us more room and a quiet place for downtime away from all the excitement.

So...my questions for all you experienced travellers are:

I understand that the GAC is available if needed. I am not sure if we would need it but my worries are that (a) my son has very sudden urges to have a bm and there is no warning literally; would one of us be able to leave the line to take him to the washroom and then come back (he is not trained to use the toilet to pee yet )? and (b) if we do not have a GAC are we able to request seats close to an exit in case we have issues? my fear is being trapped in a show and he wants to leave and has a massive meltdown. I don't think there are really any other issues we woudl have with him. I understand that the lines are shorter at that time and he is pretty good at waiting with a lot of explaining (over and over and over) and if we let him know well in advance that there will be lines and he will have to wait.

My son also has epilepsy...controlled with medication. My questions are:

Travelling with medication. He is on valproic acid and carnitine (for ammonia levels) and these are both liquids. We of course will be packing these in a carry on. I have read and heard conflicting information about liquids on airplanes. Is it correct that the max amount is 4oz. per bottle and it must be packaged somehow in a plastic ziploc (i am assuming like a freezer bag)? We have heard from others that they have travelled with their regular size bottles and not had a problem. Also do we require a letter from the dr stating that is a legitimate prescription or is the label on the bottle sufficient? Our other concern is with the lights on rides etc. triggering a seizure. We have no experience with this at all as this would be our first trip with him somewhere like this. Is this something to be concerned about?

Thank you all so much for your information/tips! We are so excited about this trip and our ds (who is a Star Wars freak...obssessed and I know all you ASD parents know what I speak of) and can't wait to see Darth Vader. Hopefully he will be there! YIKES!

Hi My son also has epilepsy and we carry on his meds all of the time. It is not a problem with the amount but I would call the airport to be sure. But our experience is that as long as the medication has your child's information on the label than it is fine. It needs to have the actual perscription label from the pharmacy on it and it needs to match your son's name on the ticket. I would not transfer the liquid to another bottle because then there could be problems. We bring three 450ml big brown glass bottles of Tegretol and 100ml of Keppra also a big bottle but it's not glass. We also have it out of the carryon and explain it to the screeners so they don't think we are trying to conceal anything. We have never had a problem and all this has been after Sept 11th since we started travelling with Chris on a plane when he turned 3 in 2003. That is also when he started having seizures.

As far as the lights triggering seizures we were concerned too. Chris is not photosensative (his eegs never trigger a seizures during the strobe light parts) but still with all the stimulation the rides bring we were concerned too. He had no problems but he did have a seizure on a ride once but he was little and we were able to carry him off when it was over. I don't know jow we will handle it when he gets too big. He is 7 now and almost at that point. I would clear it with your son's neurologists but I say go and just take it slow. Go on the tamer rides first and if he tolerates them well then move to the bigger ones. Also just to make you feel better Disney is awesome with dealing with seizures. Make sure to use the first aid stations they are an awesome place to rest after a seizure and air conditioned. Even if he looks like he is about to have one go there and let him take a rest. They have really comfy cots , stuff to drink and are staffed for emergencies. They will even keep the meds cool if you need them to. We carry ours in the stroller in a coolerbag.

Oh and speaking of stroller. We have a McClarren Major and it has been a God send for those times he has had a seizure and needs to sit and rest and or we need to get back to the room. He is too big to carry now and that stroller makes dealing with epilespy so much better. We went on a trip once where he had at least 3 -4 seizures a day. The stroller was a huge help It made it possible for him to still enjoythe trip despite his epilepsy. He would have been devastated if we had to go back to the room all the time or if we couldn't go to the park because we would have no way to transport him if he had a seizure.

My only other advice is try and plan everything around him. Luckily Disneyland is much smaller than the World and that makes it so much easier to do. But you don't have to get everything in and if he is happy it makes the whole trip pleasureable. We have gone with commando family members and have waved bye bye to them because we know it would be way too much on Chris. Meanwhile they would be carrying their exhausted kids back at night all cranky while Chris was enjoying the pool. It is so much better to let the kids be the guide. They usually will let you know when enough is enough

Have fun!!! You guys are gonna have a BLAST. We loved Dsneyland.

I hope I have helped and please ask more questions if you need to.

 

[3DisneyNUTS]

For some reason I posted that you were going to Disneyland.....Now I reread and I see it is the world. Well I would also suggest you drive to all of the parks so you have your own way back to the room and don't have to wait for the busses or hotel shuttles. We hardly ever use the busses except when Ds wnts to (he loves the disney busses). Again have a great trip

 

[Kady]

Thank you for all your suggestions!

We are super excited (even though its 8 months away)...but of course the idea of driving 7 hours, sleeping for a few hours getting on a plane with 3 kids (2 who have never flown before), flying for 3 1/2 hours, dragging luggage (one full of the only foods that ds will eat) and car seats to the rental car kiosk, dragging same luggage and 3 kids to the rental van and finally finding our way to the condo is very daunting without a special needs kid. Add that into the mix and we think "we must be out of our minds!"

Having said all that we're pretty sure that we can do it and if the inlaws come along all the better. An extra set or two of hands never hurt. We have said all along that there is no way we can fit it all in and we aren't even going to try. We can always go back (and probably will)!

We're going to get park hopper tickets so that we can leave the park(s) midday and come back if we can later in the day for fireworks etc. We have planned to spend 8 days total at the parks right now but if we have a day free we might try and fit in Seaworld or Universal.

The medication we have for ds is all in plastic bottles (rather large ones for the valproic acid) and they all have the prescription label from the pharmacy right on them. Hopefully this will be fine for the airline...I think it will be. I am thinking of maybe getting a short letter from our neurologist just to have in case.

We are planning on renting either 2 single strollers or one double. We are already dragging 3 car seats with us so I think bringing a stroller is out of the question unless the inlaws can be convinced to come with us. Too much stuff!

Stupid question...do they sell Cheerios in the US? We call it circle cereal in our house. This is the only thing that ds will eat for breakfast. We also have to make sure they have Kraft cheese slices. We will bringing loads of the only 2 cookies he will eat. We hope there is apple juice in blue juice boxes.

Also if anyone can enlighten me on the washroom situation when standing in line i would appreciate it! It would greatly ease my mind to know that one of us can leave with him and come back and join the others in line again.

Thanks again everyone!

 

[3DisneyNUTS]

Cheerios are a definite and so are kraft cheese slices. Any grocery store will hhave them just make a pit stop and stock up on them. Also bring a small cooler bag into the park and that will help with all your perishables

Washroom on lines don't happen. I would definitely get a GAC so you can leave the line an return if the need strikes. There is a huge issue with that and some park goers thinking if you leave and return it is cutting so to be on the safe side explain your needs to guest services and they will figure out how to accomodate you best. If you get the GAC and never use it great but if you need it you will have it handy.

Also about the stroller thing. The only issue we had with renting theirs is that they cannot leave the parks and if you son has a seizure you would have to carry him from the main gate all the way back to the car. We learned that the hard way and is why we make sure we have our own. Our son is sometimes dead weight after a seizure and after a long day at the park it is almost impossible to carry him and make it back to the car or bus. Otherwise if you are pretty sure the seizure control is good then a park stroller is great

we get aprk hoppers too just for that reason! It is a great way to do the parks and have an out if you need to. If you can come back later all is not lost. We have left the park just to cool down at the pool and returned later for dinner or fireworks. It is the best way to do Disney IMO

Well have fun. I am sure it is going to be great!

 

[Cheshire Figment]

A noe for a couple of the posters.

Tha Park Hopping feature is necessary only if you will be going to more than one major park per day.

You can leave any park and return the same day (actually more than once) with a base ticket, you only need the hopper to go to a different park.

 

[LauraVV]

I understand that the GAC is available if needed.

Travelling with medication. He is on valproic acid and carnitine (for ammonia levels) and these are both liquids.

Hi,

I'd suggest asking about the GAC just in case you need it. We took liquid medications and didn't have any problems. You need to declare them. You can look on the TSA site. But if you pack the liquid meds separately and declare them you should not have a problem. My kids and I take Carnitor (pills tho). Smells like dead fish, doesn't it?

We have a Convaid Cruiser for our daughter. If your child has problems walking community distances I'd suggest asking about that. They are sold as wheelchairs so insurance pays for them. Ours has been a lifesaver.

You could also ask your pharmacy to give you a smaller, labelled bottle for the medications. We don't like taking huge bottles, not because of TSA but because I'd hate to risk breaking or losing a whole month's supply of medication.

 

[flynnmnstr]

If you do not feel like packing all the food- wegoshop.com has always done a phenomenal job finding the foods my son can and will eat. And the delivery cost is reasonanable; especially for us because we do not rent a car. And the 30 minute grocery stop with our car service does not go over with my two boys after being on a plane for 3 hours-- they want to get their behinds in the Grotto Pool at the Dolphin.

I know people recommend driving but we much prefer staying onsite and using Disney transportation. I can't take the parking lots at the end of a long day. I would much rather wait in the monorail or bus line, with a snack and drink. ESPECIALLY AT MK-- I felt like a lamb going to the slaughter house in that tram line after Wishes in August. If there is ever an emergency medically or weather related you could always hop in a cab-- we did that at AK this August when a bad storm rolled in around 330pm.

I would go to guest services and tell them about your son and get a GAC. Both of my boys get a GAC, and typically one needs it when the other doesn't and vice versa. They are both in the autistic spectrum and have the same GAC needs but the reason behind those needs are very different. Just because you have a GAC doesn't mean you have to use it every second of everyday. Our last trip in August my DH was on Business for the first 3 days; I have to admit I used my GAC at pretty much every ride and attraction. They were still adjusting to vacation plus I was on my own with them. I needed all the help I could get. I had no problems and it was pretty good experience with the exception of an asthma attack that no one was expecting. When my DH joined us we only used our GAC for certain things. Some days we probably didn't use it at all.

 

[Kady]

I am glad to hear that Cheerios and Kraft cheese slices can be bought in the US! It probably seems like a stupid question but I wanted to make sure.

We just found out that our inlaws will be coming with us! Two extra set of hands will certainly make things easier.

From all of your responses I am thinking the GAC will be a necessity if for no other reason then being able to leave a line and rejoin later on. We try very hard to keep things the "same" for all three of our kids (especially as ds is a twin) but I think Disney is special circumstances and I know that my MIL will have no problem leaving the line with ds if the situation arises.

I wonder...have any of you encountered situations where someone has commented on your child leaving and coming back in line? If so, how did you deal with this? I have had only one situation where a woman commented to me when walking by myself and my ds who was in complete meltdown mode becuase he had lost this little "stick" that he had been carrying around the store with us. She said something very rude and of course at the time I was struck mute! In general though most people can be kind but I find myself always on the verge of "explaining" his behaviour...as "Oh he's autistic that's why he's acting like". I never do it though. Not because I feel bad for him just because in the end I think its none of their business.

I am a little concerned about seizures. Essentially if he does have one it makes him extremely tired and pretty much out of it for a good long period of time. He is also huge for his age (4 1/2 50+ lbs and almost 4') so carrying him through a parking lot could be an issue. Are these parking lots huge? I have no clue and I picture mall parking lots for some reason. As one poster said carrying a post-seizure child is like carrying dead weight.

I'm pretty sure we can get our pharmacist to give us smaller bottles of his medication. Should make things easier. Especially packing as they would fit better in a plastic bag then one huge bottle.

Anyway thank you all for the tips and advice. Keep them coming!

 

[SueM in MN]

I haven't had much time to post until today.
First - for air travel, there is a requirement that liquids (mouthwash, shampoo, etc.) be in bottles of 3 ounces or less and each passenger may not have more of these items than will fit in a 1 quart ziplock bag (available for free at the screening station at the airport).
But, the 3 ounces requirement does not apply to medications. You need to separate the medication and declare it, but that's not a problem. Here's a link to the Transporation Security Administration Page about travel with Disabilities and Medical Conditions.

For information about GACs (Guest Assistance Cards), check out post #6 of the disABILITIES FAQs thread, which is FAQs about GACs.
There really isn't a specific "let us out of this line and then let us back in" GAC. For any of the movie or theater type shows, you will come in on one end of the row of seats and exit at the other end of the row. So, if you want to be closest to the exit, just continue all the way along the row to the other end. The exit signs are well marked and shows normally have a CM in the theater during the show in case you need help. If you need to separate from the rest of your party, it's easier to find each other later if you either both have cell phones or both have 2 way radios.

There are also some links in post #3 of that thread that might be helpful, one is information about WDW and seizures; the biggest triggers for seizures are dehydration, over-tiredness and changes in schedule.
You might also want to look into renting a special needs stroller for your child - you can find info about companies that rent them in post #2 of the disABILITIES FAQs thread.

 

[3DisneyNUTS]

The parking lots are HUGE. That is the only reason I would say to get a stroller in case he has a seizure and you need to return to the car. The parks rental ones are plastic tub like (best way I can desribe it) and the one we have is a MacClaren Major which has a seat similar to an umbrella stroller but deeper and made to fit a child up to 140lbs. It is lightweight also. We love it.

I speak from experience from when we didn't have a personal stroller and DH had to carry DS (he was 3) back to the Disney busses (which are closer than the parking lots. It was ROUGH.

After that we actually bought a stroller that trip from Target and he was smaller then. We kept that stroller for 2 years until we got the MacClaren Major. Our insurance covered it as a wheelchair. I don't know how it would work for you but maybe you can get one as a medical nessesity. Even though DS walks seizures leave him incapable of walking sometimes and then the stroller is a nessesity.
http://www.maclarenbaby.com/major/