Why Vacation Is Hard for My Special Needs Daughter

[jejegreer]

We got back last night from a 17 day trip to Florida to visit Disney World, Clearwater Beach, and my parents in Stuart (near Palm Beach). I just thought that I should mention to anyone thinking of doing a trip this long, or a trip to Disney, some of what went on.

Disney World is quite overwhelming, even for perfectly well-adjusted children and parents. There are SO MANY people. We went for one of the predicted 4 least busy weeks of the year, and still I could not believe how many people were there. The constant pressures of other people around all the time are quite taxing for a child with emotional issues, and led to Clara trying to run away from the hotel several times when we were there. I have a broken leg and torn knee ligament (another story entirely), so I had to ride a scooter. Clara took the scooter once at the hotel to drive around in a circle, disappeared from view, and got lost. I do not recommend allowing your child to ride a scooter unaccompanied if you are unable to run quickly. She was hysterical by the time we found her 20 minutes later. We are blessed that she finally found her way back to the building next to ours and could hear the very loud shouting of Mommy. Since most of you will not need a scooter, the bigger take away is that Clara really needed some time to decompress after going to the parks. Some quiet time, alone or with just one parent, would be exceptionally beneficial when the experience of the trip is all new and completely all-encompassing.

Going to Disney World requires a lot of waiting. You have to wait for the bus to take you to the park. Once you get to the park you have to wait in line for rides, or to meet characters and princesses. You have to wait in line to get food. If you do not eat at a sit-down restaurant (Clara is comfortable with those), you have to wait for your food to be served in another line. You have to wait to watch the parades and fireworks. Waiting is very, very hard for Clara. I am guessing that it would be for other kids with special needs. I did learn that if your child has a condition, such as autism, that makes waiting extremely hard you can get a disability pass from Disney. This basically means that you will get a time to return to the ride so that you can go in a quick (5 minutes or so) line. I had to get these due to my leg a couple of times, and they are a pain because you have to leave the attraction and return with your timed pass, but it would have been much better than waiting in line for 50 minutes for Winnie the Pooh or 1.5 hours for the Avatar boat ride. I do not recommend waiting for anything longer than 20 minutes, and that is pushing it. 15 minutes was OK for Clara (she is 9, for those who do not know), and 10 minutes or less did not result in any kind of crying. The long waits were extremely hard for her and her family.

Clara has done just fine on 2 week camping trips because we have brought our dogs. I am not sure if this is just her, but having those familiar, loving friends around made being away from home OK. Clara began begging to have the dogs sent to us, or to go home early, about day 4. If we go away again on a trip where dogs cannot go, we are going to need to limit the time period of the trip. It was incredibly hard for her to be away from the familiar, and particularly from the best friends. I would love to know if other people have experienced this same sort of thing where their child/children were unable to deal with basic day-to-day activities due to being away from the familiarity of home.

Thursday we finally have Clara's intake appointment to be tested for ADHD and mood/anxiety/behavior/conduct disorders. I am hoping it will go well. Thank you to Colomama for recommending a place that was able to get her in with a less than 2 month wait. We are still on all sorts of waiting lists, and when I suddenly have free time I will call to cancel those potential appointments, but I have to say that it is such a relief to finally being on the way to knowing what is wrong other than dyslexia.

[Anita]

Re: Why Vacation Is Hard for My Special Needs Daughter

We got back last night from a 17 day trip to Florida to visit Disney World, Clearwater Beach, and my parents in Stuart (near Palm Beach). I just thought that I should mention to anyone thinking of doing a trip this long, or a trip to Disney, some of what went on.

Disney World is quite overwhelming, even for perfectly well-adjusted children and parents. There are SO MANY people. We went for one of the predicted 4 least busy weeks of the year, and still I could not believe how many people were there. The constant pressures of other people around all the time are quite taxing for a child with emotional issues, and led to Clara trying to run away from the hotel several times when we were there. I have a broken leg and torn knee ligament (another story entirely), so I had to ride a scooter. Clara took the scooter once at the hotel to drive around in a circle, disappeared from view, and got lost. I do not recommend allowing your child to ride a scooter unaccompanied if you are unable to run quickly. She was hysterical by the time we found her 20 minutes later. We are blessed that she finally found her way back to the building next to ours and could hear the very loud shouting of Mommy. Since most of you will not need a scooter, the bigger take away is that Clara really needed some time to decompress after going to the parks. Some quiet time, alone or with just one parent, would be exceptionally beneficial when the experience of the trip is all new and completely all-encompassing.

Going to Disney World requires a lot of waiting. You have to wait for the bus to take you to the park. Once you get to the park you have to wait in line for rides, or to meet characters and princesses. You have to wait in line to get food. If you do not eat at a sit-down restaurant (Clara is comfortable with those), you have to wait for your food to be served in another line. You have to wait to watch the parades and fireworks. Waiting is very, very hard for Clara. I am guessing that it would be for other kids with special needs. I did learn that if your child has a condition, such as autism, that makes waiting extremely hard you can get a disability pass from Disney. This basically means that you will get a time to return to the ride so that you can go in a quick (5 minutes or so) line. I had to get these due to my leg a couple of times, and they are a pain because you have to leave the attraction and return with your timed pass, but it would have been much better than waiting in line for 50 minutes for Winnie the Pooh or 1.5 hours for the Avatar boat ride. I do not recommend waiting for anything longer than 20 minutes, and that is pushing it. 15 minutes was OK for Clara (she is 9, for those who do not know), and 10 minutes or less did not result in any kind of crying. The long waits were extremely hard for her and her family.

Clara has done just fine on 2 week camping trips because we have brought our dogs. I am not sure if this is just her, but having those familiar, loving friends around made being away from home OK. Clara began begging to have the dogs sent to us, or to go home early, about day 4. If we go away again on a trip where dogs cannot go, we are going to need to limit the time period of the trip. It was incredibly hard for her to be away from the familiar, and particularly from the best friends. I would love to know if other people have experienced this same sort of thing where their child/children were unable to deal with basic day-to-day activities due to being away from the familiarity of home.

Thursday we finally have Clara's intake appointment to be tested for ADHD and mood/anxiety/behavior/conduct disorders. I am hoping it will go well. Thank you to Colomama for recommending a place that was able to get her in with a less than 2 month wait. We are still on all sorts of waiting lists, and when I suddenly have free time I will call to cancel those potential appointments, but I have to say that it is such a relief to finally being on the way to knowing what is wrong other than dyslexia.

The second I read “trip to Disneyworld” I cringed, interiorly. YES: you are not alone in having issues with vacation and a special needs child. My older son, in particular, has a hard time on vacation. We went to Hilton Head when he was not quite five years old (my older daughter was 3 and my younger son turned one on the trip). My older son was practically non-verbal at that time and far less-well-adjusted than he is now. He adored the ocean and our condo rental, but not much else. He refused to eat anything except French fries the entire trip; was anxious, hyper and pushy almost every day; and screamed for almost the entire length of an hour-long dolphin cruise. It was memorable.

A few things I learned:

1) Have a definite schedule for each day and make your child aware of it.
2) Minimize lines and waiting (as you indicated) as much as possible.
3) Keep them fed and hydrated
4) Have a scheduled nap/quiet time each day.
5) Avoid crowds
6) Stay someplace quiet where your child has privacy, security and quiet

Even though we checked most of those boxes on our trip, we still had conflicts. He was simply out of his element. He did not know what to expect (even when we explained what we were going to do — his level of comprehension was, at that time, quite low), and he was very excited about the trip but did not know how to process that and adapt to all the new encounters or compartmentalize the added fear he had of leaving the familiar and being thrust into the unknown. Vacation can feel like “forever “ for a child with special needs. They may not be able to regulate the fact that vacation is temporary and that home is only a plane or car ride away. I often wished we could visit Hilton Head during the day and magically return to our own home each afternoon!

It was additionally hard for us because we had never gone on a “family vacation” before and we somehow thought if we prepared enough that things would go smoothly. We looked forward to some “time off” but it ended up being “time on” instead. It can be hard not to resent your child for “ruining your vacation” and you may express frustration along the lines of “why can’t we just have FUN like NORMAL people?”. I understand completely that sentiment but advise against falling in to that trap. Vacations to places like DisneyWorld (or just to the beach for a week!) are difficult for every family. And even “normal fun” is exhausting for families whose members do not have special needs. So keep that in perspective before you find yourself angry at your child. (I know this well; not an accusation!)

For awhile, keep things low key on vacation. A shorter stay in a quieter place will not only be easier for a special needs child to handle (and enjoy!) but will also leave the rest of the family feeling refreshed instead of exhausted. DisneyWorld will still be there when the children are a little older and can handle a little more stimulation. If you simply cannot resist the pull of Florida (or New York City or the beach or the mountains), have your special needs child join you for a few days and arrange for them to stay with family for the rest of your trip, if not for the entirety. My son quite enjoys having a vacation from us at my sister’s house in another state. He gets to spend time with his cousins and run around. He does not feel “left out”. To the contrary! He gets excited about “his special trip” and barely says goodbye when we leave!

I’m sorry for your stress and for Clara’s anxiety. I do hope that your leg is healing well and that you are taking time for yourself to rest and adjust.

All the best,

~Anita

[cherylswope]

Re: Why Vacation Is Hard for My Special Needs Daughter

You are not alone in this, I assure you! Over the years we lost my very young and excitable daughter at the vast St. Louis City Museum, lost our wandering, distracted son one day at Six Flags, and endured hours-long meltdowns at the Wisconsin Dells before we eventually learned that a favorite local nature park -- or quiet camping, as you mentioned -- suited our children far better!

After the Dells, we instituted a Half-Day Rule. Our children can thoroughly enjoy a half-day of big fun, but no more. For example, if we vacationed with another family we joined them for the morning and then stayed in to rest, relax, read books in the afternoon. Or we relaxed in the mornings and joined in the fun for the afternoon. But not both. For years this has become our very happy compromise. We can still enjoy big outings but at our family's low-key pace.

My husband and I have found that because it takes so much planning, forethought, and emotional strength to prevent problems, we enjoy the Half-day Rule for ourselves as well. Like so many things with special needs in the family -- whether medical, sensory, neurological, emotional, learning or some combination -- pacing is key.

As I said, we learned this the hard way too. Clara loves her dogs, her family, her security. You can stretch her a little, and some stretching is good, but full days at the Magic Kingdom showed you plenty!

Jot down in bullet-point form what you wrote here. Take it on Thursday. It might be helpful in the intake interview.

Thanks for sharing. Get some rest, JeJe. You had quite a "vacation!" I hope your leg heals soon.