May Chicken Out Again

[Napria]

We used to go to WDW each December from 2001. In 2005 we planned our trip for the week between Christmas and New Years so we wouldn't have to pull the kids out of school (they were getting older and the district was cracking down on unexcused absences.) In June of 2005 DS, who had already been diagnosed with mild CP from a perinatal stroke, and started to have mild seizures was diagnosed with Asperger Syndrome. As the trip neared, I realized that due to this it wasn't a good idea to take him during one of the busiest times at WDW. I rescheduled the trip for the following April, during the kid's Spring Break.

While talking to my DSis (Hi Sandy!) just a month or so prior to the trip, she told me that the crowds are pretty heavy during Spring Break too. I cancelled and re-scheduled for October. Then I went to the principal of my DD's school and the Director of my DS's school and explained the situation. At this point, summer was out of the question because DS's epilepsy had gotten much worse, and the heat aggrivates his seizure disorder. Both the principal and director told me to go ahead and take them out for a week, but no more or by law they'd have to sick the social worker on us.

In October, two weeks before we were to go, I had heart problems that landed me in the ER. I had to cancel to take tests to determine the extent of the problem (fortunately not that bad). I rescheduled for the end of this January. Now we've had some big things break down in our house that needed to be replaced and even though I've already got the park tix and paid for about half of the campsite, I'm starting to think this trip is just not meant to be.

I'm also starting to chicken out because when DS was at WDW last time he was a little kid, and allowances could be made for his behavior due to immaturity, but now he's 10, with the capability to melt down better than many 2 year olds. And how do I deal with the seizures? What if he has a grand mal, tonic clonic on a ride? What if he has cluster seizures and we need to administer the medicine which will stop them, but also makes him pretty dopey?

I've read where others have rented a MacLaren stroller for older kids with disabilities from some medical place, but DS WON'T ride (unless he's knocked out from a seizure). Should we rent one and just carry it around? His able-bodied sister (8 years old) will be begging us to let her ride, then we'll either be fighting with her the whole time or dealing with dirty looks from people who think we're abusing wheelchair privledges.

I'm getting overwhelmed! I'm ready to just cancel again, but after spending over $800 on tix, I'd have to reschedule and I just can't think of any time that is a good time to go.

Any practical advice or support?

 

[3DisneyNUTS]

first off don't worry about other people and their looks. Take the vacation (you deserve it as a family) If DD wants to ride in the stroller let her! You have it in case of emergency for DS but if DD wants to use it when he doesn't need it let it be.
Plus we park ours with stroller parking when Chris isn't using it for a seizure. So you will not get any special treatment from using it. I have seen 12 year olds tired in the big plastic stollers just chilling out from being tired.. Who cares you are on vacation right. Let the people that give you looks to lighten up.
As far as taking them out of school Chris teacher says that the time as a family is just as important as school. Now Chris is in special ed so his curriculum is much slower. He doesn't miss as much as a typical student.
So I say take your kids and have a blast. Don't worry about his behavior, handle it the best way you can and let other mind their own business.

 

[Napria]

Thanks for the reply. Ironically, my son's name is Chris, too.
I'm also worried because I'll be getting a GAC for him due to his Asperger Syndrome. I'm not planning to use it unless he really can't deal with the stim of the parks/crowds. I'll have to see how it goes.

I don't expect to be going on rides while he's in the stroller... the only time he'll ride in it is if he's postictal, and he can't ride (the WDW rides) like that. I guess the stroller will be ok, since it doesn't look like a wheelchair and if Chris is in it, he'll be obviously zonked.

But what about using the GAC for a kid who looks normal? I'm going to see whether the conditions are such that we can skip using it and pace ourselves, but if not, I'm just hoping I can deal with the dirty looks and/or rude comments. He had some trouble last time we were there (and before we knew he had an autistic spectrum disorder) especially by mid-afternoon. This was an early December trip, and the crowds were not especially heavy.

AAARGH! Don't let me talk myself out of this! I haven't told the kids about the trip because I don't want them to be disappointed if I have to cancel it. But I think I'm also leaving myself an out, and I think the whole family could benefit from some fun (wait, what's "fun"? it's been sooooo long.)

 

[nicoleakr]

I say take the kids and go.I have two children with learning disabilites (one who has pdd nos) I learned a long time go not care what other people think. You are hear for them now and that 's all that matter. It sounds like everything that you are going through , you need to escape.Best wishes!

 

[3DisneyNUTS]

I completely agree. Don't let insensative people ruin your trip. You need it and even more the kids do. It gives them a break from all the regular life stuff. Like DS loves to not have to do speech therapy, Ot and all the other stuff. It gives the kids a chance to forget about the issues and just have fun

 

[OneLittleSpark]

Go, have fun and ignore anyone who gives you a look - they're wasting their holiday by worrying about what you are doing, but that doesn't have to spoil yours. If the GAC will help you, use it; it is designed to alert CMs to hidden disabilities, so don't worry that your son looks "normal" (whatever normal is ).

I hope you all have a magical, wonderful holiday

 

[MEM]

Regarding the GAC - no one but the CM knows you have one! The only "dirty looks" we ever received were from people in stand-by who were either not clued-into the benefits of fastpass or had not planned better.

Yes, there were a few times we were sent in through the wheelchair entrance even though DS disability is not apparent. There were no dirty looks then either. I would not worry about it as long as you don't "abuse" it - for example, I saw one man get off Kali River Rapids and RUN over to the loading area and show his GAC to the CM, expecting to get right back on. The CM pointed him to the end of the FP line!!!

 

[tophee99]

Go and enjoy your trip!! Disney magic is wonderful "medicine" for everyone

I can't believe that in this day and age that there are still so many ignorant people around!!! The only thing you need to worry about during your trip and you and your family having fun.........and at Disney it is impossible not to !!!