Leaving in 5 days....would love some advice!

TessieLou

Earning My Ears
Joined
Jan 24, 2012
Messages
12
As the title says, we are leaving for WDW in 5 days. This is the first family trip as our boys are now 5, 3, & 21-months.

My biggest concern lies with my 5-yr-old. He is diagnosed as slight Developmental Delay, Sensory Processing Disorder, and he has epilepsy. He does have some characteristics of Asperger's, but he has passed 4 different autism screenings by 2 different physicians. He can get very anxious and/or very over-excited. Too much overstimulation can just overload him and turn him into a very frustrated and irritable child.

His "quirks", as I like to call them, came about as a result of being born 8 weeks early. On top of that, he has suffered permanent brain damage in the frontal lobe due to a nasty round of viral encephalitis (he had West Nile when he was 2...was actually in the PICU for his 2nd birthday). It is this damage to the brain that is the reason for his seizure activity.

I do want to mention, though, that he is highly intelligent (he's 5 and already tested out of the kindergarten level....he's in a special education kindergarten class, but his teacher has him working on a 1st grade level with some 2nd grade stuff thrown in for "fun"). He's smart and he does have good common sense. Unfortunately, his hyperactivity and anxiety and frustration just combine to make things quite difficult at times.

We have 6 adults going on this trip (me, hubby, my mother, my in-laws, and my hubby's aunt), so I know I will have lots of help with my 3 boys. We are planning on arriving at POR Tuesday mid-morning and just staying around there for the day (maybe head over to DTD for a bit, but just staying out of the parks to allow the boys an adjustment period). We have plans to take breaks in the middle of the day, and stick to their home routines as much as possible (all 3 of my boys go to bed at 7 pm....I'm sooooo in trouble! ).

However, I do have some concerns of my own. And this is where I would love some advice!

My son has a hard time waiting in line (or waiting in general). We plan on doing FP as much as possible, but I'm still worried that he's just going to act out while waiting in line or for anything in general. I don't want him to negatively affect others in line, but I moreso don't want him getting so upset/frustrated that he just shuts down on me. What is the best thing to do in this situation? Are there any alternative waiting areas for children such as mine?

Second, we have no known triggers for his seizures. At this point in time, they are absentee seizures (he just blanks out, will utter jubberish, gets confused, sometimes vomiting, then just literally goes to sleep whether he sitting or standing). We have no way to predict when they will happen. He is on anti-seizure medication. But my question is this: are there certain rides/attractions we should definitely avoid? Like mentioned, we don't know of any particular triggers, but I don't want to necessarily find some out while on vacation.

Three, how do you stay sane? popcorn::
 
I'm just guessing, but based on what you described, I would guess your son will not only do great at Disney, but you might find he THRIVES as Disney!! My son does fabulously there, Disney is so special in that there is enough to keep kiddos attention spans, and adults too, and not usually be too overstimulating.

That being said, for any wait in lines (and FP is very wise!) I would suggest bringing something that he enjoys at home... if it's a Nintendo DS, or an iPod, or a book, etc. My son loved his travel size Magna Doodle and we stuck it in our backpack, that helped a lot at that age. Also, my son loves his iPod and earbuds... the earbuds came in handy by blocking out really loud noises, but allowed him to still enjoy what was happening. Also, a few snacks in line helped us out, popcorn or M&M's were a nice distraction!!

As far as flashing lights or anything that might trigger any seizure activity, I would definitely say to avoid Stitch's ride... ugh. I say that anyways, it is, in my opinion, a ride in need of some changes, LOL! Mickey's Philharmagic comes to mind as well as far as bright lights, etc. I'll keep thinking, there might be more, but really these are the ones that stand out to me.

Have a great time!!!
 
As the title says, we are leaving for WDW in 5 days. This is the first family trip as our boys are now 5, 3, & 21-months.

My biggest concern lies with my 5-yr-old. He is diagnosed as slight Developmental Delay, Sensory Processing Disorder, and he has epilepsy. He does have some characteristics of Asperger's, but he has passed 4 different autism screenings by 2 different physicians. He can get very anxious and/or very over-excited. Too much overstimulation can just overload him and turn him into a very frustrated and irritable child.

::

Hi,

I have an 8 year old daughter with a lot of the same issues as your son. When we go to WDW we get a GAC with a stamp allowing us to use her stroller as a wheelchair. With this stamp we are able to keep her in the stroller in the lines. It gives some space between her and the other people in line and since fatigue is one of her seizure triggers it helps to minimize that. Also, if she does have a seizure she has somewhere to sit while she recovers from it.

Other than that we try to keep our routine as close to normal as possible (get up at the normal time, eat at the normal times, go to bed at the normal time, etc.). We also take things very easy in the parks and always make sure that we have snacks and cold drinks available for her.

Hope this info helps and have a great trip.

Catherine
 
I agree with all the advice of the PP's. I also get the GAc and it helps so much with my son who has some of your child's issues. One thing to keep in mind is to set an alarm on your cell phone or watch ( and if you will coming from a different time zone make a note of that) and set it to go off when you normally give your child medication. It is very easy to lose track of time while there.
 

We took our son for his 4th birthday. He has down syndrome, does not speak and just started to walk with a lot of other issues. He only eats yogurt, cheese, chicken nuggets and bananas. I was a wreck worrying how the trip was going to turn out. He did very well and at times I think he tolerated the trip better than us. We all had a really good time and created some very special memories that none of us will every forget. A very special trip for a very special son. I'm sure your trip will be magical. I hope you have a wonderful time.
 
Too late in the evening to post much, but want to point you toward the disABILITIES FAQs thread. It is located near the top of this board or you can follow the link in my signature.

Post 3 of that thread has information for specific conditions and concerns, including some general information about epilepsy. Post 6 has information about Guest Assitance Cards and post 24 on page 2 has information about attractions with flashes of light.

Since your child has no specific seizure triggers, there are no specific attractions to avoid. The most important things to avoid will be lack of sleep, dehydration and not following the same schedule for medications. All of those things can lower the threshold for seizures and make them more likely.
 
There are a few things that may help (follow the other's wise advice- even if it means not having them see the fireworks at closing!) Shorter stays with nice breaks back at the room may help. Also, if you stop at guest relations and explain the situation you will find them most helpful. The people at Disney go out of their way to assist. I have a friend who brings her son with autism. He gets a Guest Assistance Card to help. It is wonderful that those with the inability to wait in line can still enjoy the parks.

I go to Disney nearly once a week since I live in the Orlando area. I see plenty of special needs discretely and quickly helped. Rest easy that WDW cast members will assist you if you need it!!!

Hope you enjoy your vacation.

My best word of advice: I go weekly and STILL find new things. You can't see it all in one vacation. Just enjoy what you can and hit the highlights.
 
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Another thing to consider about waiting in lines...normally when does your son wait in lines at home? In the supermarket perhaps? In that case he isn't waiting for anything good (in his eyes). At Disney, he will be waiting for something fun, so that might help.

Like other say, try to minimize waiting by getting to the parks early (when they open) and also using fast passes.

Bring something to distract him in lines for sure.
 
My sister has epilepsy and has had issues with the dinosaur ride In AK, and the 3d movies. Not saying they will cause a problem for your son, just letting you know there is the potential.
 

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