14 year old autistic, epileptic son

[Napria]

Our 14 day trip to WDW starts June 4 and I'm starting to get nervous. It's been 2 years since we've last been to the World and since then DS's epilepsy has gotten more severe despite multiple changes, increases and combinations of meds. His hormones are also starting to kick in, which is destressing to him since he's also developmentally functioning like a 6 to 7 year old.

On the bright side, we're staying in our camper at Ft Wilderness, which helps since he'll have his "home" to go back to whenever he needs to.

This is going to be our 25th wedding anniversary trip (my husband's and mine, that is). We had always talked about going to Tuscany for our 25th. Welcome to Holland, huh? Actually, I'd rather be in WDW with my DS, DD and DH to celebrate our 25th than go to Tuscany. I just hope my son's epilepsy will stay in check for most of the trip.

Any comforting/good thoughts are appreciated. DS had 7 seizures today.

 

[KPeveler]

Here's hoping you have a great trip!!

 

[OHJ]

We have a son with Fragile X syndrome and seizures. Fortunately his Trileptal prescription keeps his seizures under control - he hasn't had a seizure in years. No side effects either. When it comes to Disney, we are so blessed they have good policies for families like ours. We always get the Guest Assistance pass. Hope you have a great time!

 

[Luv_my_Family]

I have a 19 year old son with HFA and we took several of our WDW trips as he dealt with health issues and developmental transitions. Luckily, Disney has many family-friendly policies which helped make these trips enjoyable breaks from the stress of "real-life."

As you have already said, you are lucky that you will have a "home" to go back to when needed - that will help. If you have not already done so, talk to Guest Relations and ask about appropriate quite areas in the parks so you can take some stimulus-free breaks without going home, if circumstances arise that necessitate this. (Disney is great at supporting families in these circumstances!)

And most of all… listen to your instincts, take care of yourself, and enjoy your anniversary!

Sending positive thoughts for a fabulous trip!

 

[Owl's Friend]

If his case is complicated maybe bring a summary from his dr. (just in case you end up in the ER) Or if there is a certain protocal for treating his seizures (trying certain meds first, skipping others, etc) bring that written by drs. It may save you some stress.

 

[SueM in MN]

I have a 19 year old son with HFA and we took several of our WDW trips as he dealt with health issues and developmental transitions. Luckily, Disney has many family-friendly policies which helped make these trips enjoyable breaks from the stress of "real-life."

As you have already said, you are lucky that you will have a "home" to go back to when needed - that will help. If you have not already done so, talk to Guest Relations and ask about appropriate quite areas in the parks so you can take some stimulus-free breaks without going home, if circumstances arise that necessitate this. (Disney is great at supporting families in these circumstances!)

And most of all… listen to your instincts, take care of yourself, and enjoy your anniversary!

Sending positive thoughts for a fabulous trip!

only time fir a quick post - you can find more information abou Guest Assistance Cards in post 6 of the disABILITIES FAQs thread. That thread is near the top of this board or you can follow the link in my signature to get there.

 

[It'sOffToDisneyWeGo]

Congrats on your 25th year anniversary! A quarter of a century together.

 

[Napria]

I really appreciate all the good thought and wishes... and suggestions!

This will be DS's 8th trip and we're by no means newbies (get the GAC each time) but I still didn't know or hadn't thought of some of those suggestions. I was feeling pretty low when I posted Friday night, but I'm feeling more optimistic today.

Thank you!

 

[clanmcculloch]

Have you considered a wheelchair or special needs stroller (using a stroller as a wheelchair tag) for him? It might help for both his autism (provides a buffer zone around him) and his epilepsy (he'll already be seated if a seizure starts). It also will help keep him from over exherting himself which I would imagine would make seizures worse.

 

[Napria]

Actually he has a transport chair for the postictal phase of his seizures. It does double duty at WDW and other places that may give him sensory overload. He also has ear muffs (the kind they use at shooting ranges.) When things are too much at WDW we sit him down in the chair, put the ear muffs on and give him his iPod that's loaded with Clifford the Big Red Dog, WordGirl, Backyardagains, etc. And we can get a good hour or two more in the parks