Getting anxious about trip....considering postponing

[5olearys]

This is really and truly difficult to write. Our (surprise for the kids) trip is in 10 days. But instead of jumping up and down like I have in the past, I'm anxious and nervous. One of our kiddos has classic autism (and epilepsy and other medical issues). Over the last few months he has been experiencing a pretty extreme regression, getting more severe in the last week. To the point that we are considering eating the $200+ it'd cost us to postpone our trip. We have been to WDW twice as a family and both times were wonderful. He talks about the parks and searches out youtube videos, but in general has been pretty unhappy lately, impulse control, scripting from sunup 'til sundown (yes we have spoken at length with his drs and we are working on it). Has anyone else on this board dealt with a regression prior to a trip, still gone, and had a great time? I don't want to take everyone and have any member of the family feel like it was more of a trial than a trip. I guess I just need to hear some BTDT feedback! And some pixie dust...could use some of that. Thanks DISers.

 

[gap2368]

I am so sorry to hear about your son regression. I think only you can decide what is best for your family but I have heard that disney can be a magical place for kids with special needs and disney dose do a wonderfull job at helping some tips I can think of and I am sure other will have some too.

If he has problems with lines get a DAS card. ( If you do not know what this is someone can post a link to the page that explains it) and if he is young enough maybe a stroller as a wheel chair tag to have a safe place for him to go

take breaks you may not be able to do what you think you can do but it is ok to go back the the hotel and go swimming. find a quiet place in the parks to sit and have a snack or people watch first aid is great place to get away

if he is one of the kids that need to know what is going on set up a ruteen we wake up get drest brush out teeth go have breakfast at the food court and hop on the buss go to the park and go on some rides ( and maybe list the ones you have a FP for) and then after lunch we head back to the hotel and go swimming and then rest in the room and then have dinner at the hotel where we eat breakfast then we go back to the park ( I know some kids do a lot better if they know what is going to come next)

I hope you have a wonderful time if you go. and I hope that I helped you some

 

[5olearys]

I hope you have a wonderful time if you go. and I hope that I helped you some

Thanks very much.

 

[Hoodie]

It's natural to get increasingly nervous when traveling with our special kiddos. Only you and your family can determine what's right, obviously. We've actually seen a decrease in behaviors at Disney. It's counter-intuitive to what we thought, but something about the place makes him adapt easier.

Is it possible he senses something is up? I've found my son is far more intuitive than we think and picks up EVERYTHING. Even with a surprise trip, you may be giving off subtle signs that he's picking up on. He may know something is different or coming up and is therefore regressing. Have you thought of telling him? Having him help "plan?" Maybe planning more quiet time for him?

It's always stressful trying to take our kiddos anywhere. We've all been there!

Good luck and I hope you have a wonderful time.

 

[Nevada Jen]

That is a tough call. The surprise alone could push him over the edge. Honestly, if it is only a 200 dollar loss, I would probably postpone until you get him stabilized. As you know, the park is extra magical for kids with special needs but part of that takes tons of planning and work from special needs parents to make the park work for them and to keep their behaviors/medical issues at an acceptable level that still allows everyone to enjoy the park. If he is going through a lot of changes right now, and you don't have them quite figured out or know how to alter undesirable behaviors, I think it might make for an unpleasant trip for everyone. You could also consider telling just him ahead of time and brining him in on the surprise. Tell him you are thinking about a trip to Disney soon. "Would you like that? Maybe we can go in 10 days! Oh! Lets make it a surprise for everyone else in the family!" If you don't get a positive response, then you still have time to postpone. Or you could try a test by going to a local amusement park (or even Chuck-E-Cheese) and see how he reacts to that.

 

[aaarcher86]

We weren't experiencing a regression, but her behaviors were at a very difficult point for us. We were fresh with the diagnosis (autism, OCD, anxiety, etc) so we hadn't really "gotten better" to regress yet if that makes sense.

We still had a fabulous trip. My daughter is high functioning, but a lot of her anxiety and stress comes from school so the break and fun stuff was almost relaxing for her. She actually acted better at Disney than she had. We naturally had a few issues but we just tried to stay aware of what she needed and work with it.

 

[Nevada Jen]

I wanted to add, you are totally in my thoughts. I have totally been where you are. You can analyze the thing to death and then you have to analyze whether your analysis is what is actually causing the issues and then have to determine whether he really is regressing. . . and it is just so dang stressful! Hang in there!

 

[kreckl]

I don't think I would feel comfortable going if he was struggling. Disney isn't going anywhere. For $200 I would give him some time....Hope things improve soon.

 

[mamabunny]

I don't have any advice for you - you know your child better than anyone in the world. I just wanted you to know that I will be holding y'all in my thoughts and prayers for the next few days as you decide what to do.

Regardless of your decision, I hope that your next trip to WDW is every bit as Magical as it can be!

 

[TxWriterMama]

We went through a serious, SERIOUS behavior cycle this summer and early fall. Just terrible. We had to do a hardcore behavior modification plan with kiddo's entire team (nanny/therapist, ABA therapists, speech, OT, our family, etc.) to get her back on track.

We were so nervous about going to WDW right in the middle of that, but we decided that there might not be a "better" time in the future. There was always the chance that the behavior issues were just the newest version of her autism.

So we went--and it was fine. Wonderful, actually. We did 21 days in Florida (Universal, WDW split stay and then 4 days on the beach at St. Pete's) and had only one or two behavior issues, both on long travel days.

When we came back, she was like a new kid. I think that she just needed a break from real life for a bit. No homeschool. No therapy five days a week, 2-3 hours per day. No new house. No watching Mommy going in and out of the hospital. It was just our family in the Florida bubble.

Whatever choice you make for your family, lots of hugs and good thoughts. This autism journey is never easy!

 

[CoriM48]

It's impossible for anyone to really know how it would work if you went, but we went last year (third year in a row) during a regression. It was NOT as magical as the previous 2 years, but it was also much better than we expected. Disney does seem to have that effect on a lot of kids with special needs, and it was definitely true for our son, although less true the trip during the year of his regression. However, that week at Disney was still the best week we'd had in months.

However, we did change a lot of our expectations going into it. We had plans in place to split off if he needed a break back at the hotel (he didn't, although he did need some shorter days). We relied on the DAS much more than we had in previous years. We canceled ALL our dining and so we could eat when and where we needed to eat and were not tied to times or seats. We had picture schedules, picture maps (someone on this board made them for us, actually), chewlry, a special needs stroller with canopy for a safe place on the go. We ended up focusing a lot more on his favorites at the expense of some of the other fun things like the fireworks, dining, and character meet and greets. And it was okay. Not our best trip, but definitely still a break for him and our whole family during what was a very stressful period. All three of them have fond memories of that trip now 4 months later.

I would consider dropping the surprise if you do decide to go and prepare him now. I don't know your son, but I know a surprise trip to Disney would send my son into such a tailspin of routine that he'd have terrible trouble recovering from. But then again, many kids do well with surprise, so that's something only you would know. But if you do decide to go, just try to pad your vacation with as few surprise or reasons to force him to be flexible as possible.

Good luck! I know that feeling of wanting to protect something good from going badly but also NEEDING something good when things are going badly. I hope, no matter what call you make, that your family lands back in a more comfortable place soon. Hugs from a mama who gets it.....

 

[DisMommyTX]

We have also seen our son flourish on trips. Having mom and dad around 24/7, without the pressures of work and school helps to shift everyone's focus to a new place. Some trips are better than others, and the effectiveness of his meds plays a huge role, but we have always come back better than we left. In particularly stressful times, we find those escapes from real life are even more important, especially for parents and siblings.

Trust your gut. If you don't think your family can handle it now, then cancel and reschedule it for another time. If he is having frequent seizures or other medical issues which will keep him from enjoying the trip, then postpone until he is medically stable. But, if it is primarily behavioral stuff and you are okay with making a few changes as needed along the way, then go have a wonderful time. The whole trip may not be perfect, but it's got to be better than sitting at home thinking about what you could have been doing if you hadn't cancelled!

 

[rjthkids]

No one can know what the right answer is for you, but I just wanted to say I have been in your position and I feel for you. We were supposed to go this January, and my youngest has experienced some significant medical regressions this year. She was inpatient for so many months I honestly thought that she might still be hospitalized by the time Disney time rolled around. we couldn't plan like we usually do, and I just could not get comfortable with what would happen if she got sick down at WDW and landed in the hospital leaving one parent to manage her and one to try and salvage WDW vacation for 7 other kids. We were also having real issue getting to her doctors to clear her to go--- Last time we had gone to Disney all of them caught a stomach virus and twocontracted H1N1 flu---including my youngest who then spent 9 months in the hospital dealing with complications of that infection. Her needs are so much more extensive now than they were then.

It was a last minute cancelation and my other kids were super disappointed but they dealt with it pretty well. We rescheduled the trip at a time when hopefully she will be more stable and if not, we will have had more time to be better prepared to meet her host of new needs at Disney instead of scrambling to figure out how to do it last minute and stressing the whole time. Disney should be fun and enjoyable for everyone. I don't at all regret the choice to delay going, because I know for us it was and is the right one. Good luck!