Any Advice for our unique family?

[MISSREBECCA76]

Ok, so we are heading to WDW and a trip on DCL in just a few short months and I am a little concerned that our experience may end up being more stressful than magical.

My DS is 3 and had a stroke en utero, and although he looks "normal" he struggles with lot of minor issues (Sensory Integration Disorder, Motor Apraxia etc) that add up to a big challenge, especially when he is tired or off schedule.

Then there is my DD who is 7; she has very recently (last week) been diagnosed with Temporal Lobe Epilepsy. We do not know her triggers yet, and her seizures have thus far been nocturnal, however I'm pretty freaked out by the whole thing at the moment. She also has cardiac syncope and complains of almost constant dizziness. She suffers from severe GERD too. We cannot seem to get under control with meds, her tummy has hurt basically since birth.

Factor in my DH who will be home on leave from Afghanistan. He already HATES crowds and it is always far worse when he is returning from combat. He is irritable and anxious for the first couple months, which it totally normal, but makes me question what his experience will be at Disney. We have never been to Disney during the "reintegration" phase- let alone on mid-deployment leave.

My DD who is 5 has classic middle child syndrome, which is made so much worse based on the medical needs of her older and younger siblings. She tends to be very emotional and seeks attention any way she can. She can be more of a handful than the other two put together!!!

I am really having second thoughts about this trip. My daughter's new diagnosis was the straw that broke the camel's back. We have had successful trips before but we have always had my parents with us, they are not able to come this time.

DH says the thoughts of the 10 magical days we will spend together as a family is all that is keeping him going right now, so I hate the thought of cancelling, but am I setting myself up for disaster?

 

[SueM in MN]

I only have a few minutes, but want to welcome you here.

If I am figuring correctly, you will be going in the very end of January and early February. That is a very good time to go because it is usually very quiet and uncrowded at WDW during that time. It gets busy right around President's Day, but is quiet other than that.
Even during busy times, knowing which park to go to and which area to be in, you can avoid most of the waits and crowds. Getting to MK when it opens will allow you to see almost everything with minimal waits and minimal people.
Many people use a website/service called easywdw.com or touringplans.com
If you have a smart phone, there are apps you can download that help with information about wait times. Again, you are going at a quiet time, so should find low crowds.

Trying maintain a schedule will be important for your group. With a touring plan, you will be able to stay to a schedule better.
The biggest mistake people make is trying to see everything. That is not possible and leads to a lot of stress. Your goal is to have a fun, restful time as a family. Planning will help, but you don't want to overplan so much that you feel you are on a vacation treadmill and not a vacation.

If you have not checked out the disABILITIES FAQs thread, I would suggest doing it. It is near the top of this board or you can follow the link in my signature. Specifically check out post 3 and post 6.
It may be useful for you to use a stroller as a wheelchair if you ate concerned about your DD fainting in line or having a seizure. Do be aware though that can add to your waits, especially at quiet times when people with specisl needs tend to go. Even during busy times, a Guest Assistance Card may not be needed if you are using a touring plan and Fastpasses. During quiet times, waits are short for most things. Your husband may actually find it is less stressful to plan and not use a Guest Assisstance Card (GAC)- a GAC will be handled differently at different attractions because of what each has available. They may be even handled differently at the same attraction depending on staffing and how many others are waiting.
If you do use a GAC, you want to check first what the wait is in the regular line. For example, Spaceship Earth at EPCOT may have a 30 minute wait for guests with disabilities at a time when guests in the regular line are waiting 5 minutes or less. The same thing happens frequently at Small World at MK and at the Safari at AK.

For seizures, the biggest things to be aware of are keeping on schedule for medication, getting enough sleep and not getting dehydrated. There is not much WDW can do about her GERD, but keeping some food in the stomach helps. You can bring snacks in. A small amount of protein helps because it takes longer to digest. Things that are good would be individually wrapped cheese sticks or cheese crackers, Cheerios or other non sugary cereals.
Syncope (fainting) can be caused or made worse by dehydration or low blood sugar from not eating. Nausea/upset stomach can get to be a vicious cycle. Nausea makes you not want to eat. Not eating makes you more nauseous.

 

[Deesknee]

I'm sorry I don't have any advice. But I wanted to thank you, your dh, and your family for the every day sacrifices you all make so that your dh can serve the country I belong to. I will say a prayer that you all have a truly magical trip , and health issues resolve.

And Sue, you never cease to amaze me with your wisdom and knowlege.

 

[HowdyHeidi]

Whenever my son gets a new diagnosis, I get freaked out for a while until I learn to understand and live with it. That usually takes a few weeks to a month. You have 3 months to learn more about your DD's diagnosis, which imo, should be enough time.

As for the GERD, no there is nothing WDW can do about this, and this is a long term suggestion, but have you talked to the drs about the Nissen Fundoplication surgery? If she is in daily pain, this surgery MAY be an option that will really improve her life. It is not without risks, but then again even leaving the situation as is might not be without risk either. Something to talk about with GI anyhow...

I think preparing your children for how the trip is going to go, and all the possible delays (lines, rides breaking, taking turns with their sibling, what happens if a kid becomes sick in the park) and disappointments will help them to cope with situations once you are there.

Good luck in your decision!

 

[jgualario]

I have been to WDW several times- and with 3 kids. My advice to you would be to plan out your days as much as possible. Maybe just know what park you are going to go to each day. Set up a table service lunch so that all of you have a chance to regroup and see where your health is at. 10 days is a great amount of time! Do 1/2 days or more if you can handle it. My children become so tired that we may go and take a nap then stay up a little later. Remember you are there to relax! My husband is a veteran as well and your husband may want some down time too. Try going over to the Poly walk on the beach? Walk on the boardwalk? or hop on the boats and go for a ride if you just need a break.

I would aslo suggest that maybe you include one character meal. That way you do not have to wait in line to meet the characters. They come to your table! Less moving around and easier on the kids. Easier for you and your husband. Best luck and DO NOT SECOND GUESS YOUR VACATION! You need these memories and so does your husband.

 

[SueM in MN]

I'm sorry I don't have any advice. But I wanted to thank you, your dh, and your family for the every day sacrifices you all make so that your dh can serve the country I belong to. I will say a prayer that you all have a truly magical trip , and health issues resolve.

And Sue, you never cease to amaze me with your wisdom and knowlege.

 

[buffettgirl]

oh boy - the whole dh on leave from A-stan is probably going to be your biggest challenge. It's not just the crowds. It's driving on a crowded street for instance - they're so programmed not to stop at stop lights, not to position their vehicle next to other vehicles. My dh's biggest issues revolved around traffic. also, being on a cruise ship where DH feels like he cannot "get out" or trapped, is going to be bad. Very bad.

Also, I'm not sure if this is your first deployment or not, so if not then you already know this, but that 2 week leave is NOT the time to take a trip to Disney.

 

[Mama Who]

My best advice would be to go in with no expectations. The heavily planned, reservation loaded touring style popular with a lot of Disers is only going to lead to heartache sooner or later with that many special needs.

Take your time. Go with the flow. Be flexible. If what works best right that moment is sitting on a bench eating ice cream for an hour, just do it. Don't get worked up about itineraries or what you're "missing." Half of Disney done happily is better than all of Disney done stressed out and cranky. (And you have ten days. Chances are you can do all of it anyway.) Make your trip about living in the moment rather than anticipating the next thing. Be prepared to scrap any plan if it isn't working and walk away.

 

[MISSREBECCA76]

As for the GERD, no there is nothing WDW can do about this, and this is a long term suggestion, but have you talked to the drs about the Nissen Fundoplication surgery? If she is in daily pain, this surgery MAY be an option that will really improve her life. It is not without risks, but then again even leaving the situation as is might not be without risk either. Something to talk about with GI anyhow...

[/QUOTE]

I had not heard of this procedure before I will have to look into it- thanks!

 

[MISSREBECCA76]

My best advice would be to go in with no expectations. The heavily planned, reservation loaded touring style popular with a lot of Disers is only going to lead to heartache sooner or later with that many special needs.

Take your time. Go with the flow. Be flexible. If what works best right that moment is sitting on a bench eating ice cream for an hour, just do it. Don't get worked up about itineraries or what you're "missing." Half of Disney done happily is better than all of Disney done stressed out and cranky. (And you have ten days. Chances are you can do all of it anyway.) Make your trip about living in the moment rather than anticipating the next thing. Be prepared to scrap any plan if it isn't working and walk away.

That was kinda what I was thinking- I only have one ADR per day and no set time table as I have with our past trips- thanks for the input!

 

[MISSREBECCA76]

oh boy - the whole dh on leave from A-stan is probably going to be your biggest challenge. It's not just the crowds. It's driving on a crowded street for instance - they're so programmed not to stop at stop lights, not to position their vehicle next to other vehicles. My dh's biggest issues revolved around traffic. also, being on a cruise ship where DH feels like he cannot "get out" or trapped, is going to be bad. Very bad.

Also, I'm not sure if this is your first deployment or not, so if not then you already know this, but that 2 week leave is NOT the time to take a trip to Disney.

This is our third deployment, and I have asked him repeatedly if he was sure he wanted to to this- he says there is nothing else he would rather do. The first deployment he did not get leave, the second he came home for our son's birth and we had way over planned those 15 days- this time he wants to just get out of town and away from everyday life so we are not bombarded with extended family/friends. He just wants to steal away with us.

 

[MISSREBECCA76]

I'm sorry I don't have any advice. But I wanted to thank you, your dh, and your family for the every day sacrifices you all make so that your dh can serve the country I belong to. I will say a prayer that you all have a truly magical trip , and health issues resolve.

Thanks so much!

 

[ireland_nicole]

OK, can't speak personally to the deployment, although I do have several friends who have chosen Disney trips for their R&R and they've gone really well, but I do know a little about WDW w/ special needs, so I can give some advice about that.

First- they should be able to tell you whether your DD's epilepsy is photosentitive based on her EEG- if she's not, it makes it a lot easier, you don't have to worry about strobe effects and whatnot. My DD has multiple dx's too, of which one is Temporal lobe epilepsy. Her seizures are also mainly nocturnal, although she will seize if she gets a fever, otherwise overheated, or overtired. She was diagnosed a month before one of our WDW trips and at first it was scary, we almost cancelled, but got the all clear from the Dr 24 hours before we left. She did great! I would encourage you to rent a good size double stroller (we rent from Orlando Stroller Rentals and they have a city classic that fit them well) and get the stroller as wheelchair GAC. That will allow you to have your stroller in lines with you which will do 3 useful things. 1. Your son won't get as overtired and overstimulated 2. Your DD won't get overtired (which may be a trigger) and it gives your DH some breathing space in the queue. ALso it allows your kiddo with GERD to rest and still maintain good position.

You're going at a great time, the crowds should be pretty low. I think you're doing a great job planning, and you're going to be fine. The other nice thing about the double stroller is that if your DH needs a little alone time you can pretty easily manage the other two. Although DD also has ASD, I found the stroller very helpful to manage her epilepsy too. (now she has finally outgrown it and has a pediatric w/c.)

 

[ireland_nicole]

The other thing I'm thinking is maybe do something special for your middle kiddo- the wonderland tea party at the GF for instance, or BBB, or maybe one of you just have a special hour with her or something. She's got a lot of things that are super tough on her right now, it might be nice to be recognized in a positive way. (not that you don't do that already, I just thought she might appreciate the "extra" attention.)

 

[ireland_nicole]

Oh- and Thank you!!!! You, your husband and kids are all sacrificing so much for us, I am truly grateful and wish you a trip loaded to the brim with pixie dust.

 

[SueM in MN]

I should clarify a bit about what I meant by touring plan.

I'm not talking about the very rigid - get on x at 10:15, after riding x, proceed to y and get a FastPass, then go to z by 10:40 and ride

What I'm talking about is more general, like figuring out which is likely to be the least busy park for the day and go to that park. Also things like, Spaceship Earth is likely to have waits of close to an hour in midmorning. If you wait until afternoon, yo can likely walk right in without waiting.

 

[karlacorley]

Wanted to give you big hugs and Thanks to your hubby and family. My 3 yr old has seizures has since he was 6 months old, they still dont exactly know where they are coming from. He has 3 different types and one of his meds keeps him from sweating so we have to factor that in too..just wanted you to know you are not alone. We are going for the first time in March! Prayers for a safe trip for you guys!

 

[bopper]

Like another poster says, since you have 10 days then pace yourself. The kids honestly won't know if they miss anything (and if they do, make sure to do those things). Make sure you don't care more about something for them than they do...like don't make them wait for character autographs if they don't care. But perhaps schedule a character meal if YOU want to take pictures of your kids with the characters.

Don't forget about "pool time" if that is possible...I remember many a vacation where the kids wanted to go to the resort pool but I wanted to get to the parks...take it slower and spend time in the pools if that is what you want to do. Don't worry about missing park time.

In the parks, there is usually at least one "playground" area. As adults, we see this not as a "ride", but for the kids it is a great place to run around and not have to wait in line.

Make sure you fit in naps for those who need it and don't stay up late and get up early.

 

[buffettgirl]

This is our third deployment, and I have asked him repeatedly if he was sure he wanted to to this- he says there is nothing else he would rather do. The first deployment he did not get leave, the second he came home for our son's birth and we had way over planned those 15 days- this time he wants to just get out of town and away from everyday life so we are not bombarded with extended family/friends. He just wants to steal away with us.

Awesome then! I have seen families literally fall apart during leave because they haven't communicated what each wants. In your case, it sounds like this is exactly what you guys need. Deployments....suck. That leave time is precious. Mine wanted to just hang out at home and mow the lawn. LOL. (of all things)

 

[loadsapixiedust]

You have such a lot of needs to cope with there but I think the need for family time shouldn't be underestimated in this case. Even if you don't get to see and do everything in the parks the fact you have had that time together will be so special. I agree that you should not plan to take in too much, maybe set out a few 'must-do's' for each family member and do all you can to fit those in then see what else you can fit around them.

We have a DS with epilepsy and he has coped fine with trips to WDW, we are mindful of his eating and drinking needs, not letting him become over tired or over stimulated and keeping his medication and sleep on schedule (adjusting for the 5 hour time difference). Dehydration can be a major trigger and can so easily creep up on you in the Floridian climate so be very aware of regular refill stops for drinks, preferably water rather than soda.

Our DS has severe CP from brain damage at birth, he also suffered with GERD from babyhood and had the Nissen fundoplication and pyloriplasty procedures at age 5 after years of misery and medication. It transformed his life and ours, it may be something you can look into for the longer term.

I hope you have the most magical time and make plenty of special memories for you and your DH to cherish when he is away from home.