Leaving for Disney in 3.5 weeks and ds in suffering from increasing anxiety. HELP!

[HeatherL]

My older ds has Aspergers and food allergies and is already prone to anxiety. We have been preparing him for our trip for months but talking, showing him pictures, etc. Lately, his anxiety (and other behaviors that are OCD ish) has increased dramatically and a lot of it is about his food. We are working on finding out the cause of this dramatic behavior change, but in the meantime I'm freaking out that our Disney trip is so soon. I'm not sure what else to do other than what we've already one to prepare him. I'm worried that he won't eat when we are there because he's worried about his alleriges. I plan to let him talk to the chef when he/she comes to the table and ask any questions. We are also ordering food from GC to eat in our room. We have been saving for this trip forever and the kids have been so excited. I'm worried that our trip is going to be totally ruined by this recent development in his behavior. Any help would be appreciated. Thanks!

 

[Dashzap]

My youngest DS has food allergies, too. He has stress over the allergies as well--with reason since so many people and companies do not really understand the problem.

With my son, his anxiety is answered by making sure he has some control over what he eats. He also is in charge of wearing his epi-pen belt.

Why not come up with a back up food plan for him? Bring a box of food that has non-perishable, packable items (cereal bars, fruit, etc.) Then he knows that if he is nervous in a restaurant, if he isn't confident in the staff/chef, there will be something for him to eat. He can make a choice. And really, if it makes him miserable to eat out, why force it now? Enjoy your trip. The rest of the family can order off the menu, he can eat what he is comfortable with.

Will you have cooking facilities? Why not bring a lunchbox and cold packs, and let him pack his meals. Normally restaurants don't like you bringing in outside food, but this is medical condition. You should call/email the resorts and restaurants you plan to go to and have the allergy information attached to your reservations.

I read once (possibly in a FAAN newsletter) that some 8-12 boys and girls with food allergies can develop anorexia.

Some of this depends on the age of your child though. If he is old enough, be sure to let him know the extent Disney does train their food staff for allergies.

 

[Dashzap]

I just noticed in your signature that he is 7. Most of the kids I know with Aspergers are really smart. I think 7 is old enough to say:
1) Disney is great with allergies.
2) We'll bring back-up food for you that you are familiar with.
3) Let's give it a try, but you can pick what you eat.
4) We're going to have fun regardless. (I mean whether he chooses restaurant food or food he brought, it doesn't matter. There are other fun things to do.)

 

[EvangelineG]

I can really relate to this post! I have twin sons with Aspergers, anxiety, OCD, ADHD and multiple anaphylactic allergies. They are now 11 and we are planning a trip to WDW for December 2011. We made a previous trip to Disneyland when they were 8yo and this was really one of their first experiences with eating in restaurants (due to the number & severity of their allergies we almost never eat in restaurants, it is just too risky). We did some of the following things to ease their anxiety about our trip, and plan to do so again:
-stay at a place with a full kitchen (or at the very least a mini fridge if at all possible). This way we could plan on one meal out a day and the rest we could eat familiar foods in.
-showed them the menus on allears, pictures of the restaurants, the emails that I received from Disney dining, reviews about how AWESOME Disney is with allergies. Basically gave them access to as much positive info about the upcoming experience as possible, which it sounds like you are already doing too.
-took familiar snacks, so that if they opted out of the meal they knew they wouldn't be hungry. It really took the pressure off for them to know they didn't have to eat anything they didn't feel safe eating. DL was all about the rides for us, not the food. It really won't matter if he eats apples and granola bars (or whatever his portable comfort foods are) for several days, as long as he is calm and well and enjoying himself.
-role played expectations and possibilities for what would happen at the restaurant many, many times

I wish you luck with your trip! It can be such a challenge travelling with kids with this particular combination of needs! But I just know that Disney magic will kick in and it will be a fantastic trip, even with the inevitable bumps along the way.

 

[hildarumpole]

Your son sounds like my daughter. Could something have happened at school? Nearly every time my daughter's anxiety levels go up, it's about some incident in the cafeteria (generally trivial to almost everyone else), that sets her off and the anxiety carries over into every area, not just food. The incidents have included sitting across from someone who chews with his mouth open, someone who talks while chewing and the food flies out, smeared peanut butter on a table she wasn't even seated at, someone throwing up, and the classmate who mixed all his hot lunch food together into one heap and ate it. Because of her food allergies, she's very sensitive to the way other people eat and has a low tolerance for poor table manners. Her OCD and anxiety kicks in and it often takes a lot of discussions to get to the bottom of it. Once we identify the source of the problem and alert her teacher, she gets better pretty quickly.

My daughter's first trip to DW was pretty stressful. We thought eating at restaurants would be the worst, but after the first night when she met the chef at Ohana and he eased her fears, she was great at every meal. The real problem was the rides. She cried in every single line. We didn't even attempt to take her on anything remotely scary or fast. It was a fear of the unknown. Once she did a ride, she was fine and admitted she enjoyed it, but then on to the next ride, and the crying started up again. We thought watching the Disney vacation DVD a bunch of times before the trip would get her ready, but it didn't help. She needed to ride them to verify they were safe and fun. Fortunately, subsequent trips have been very successful, because she knows what to expect.

Try talking to your son and his teacher to see if something happened or if the teacher has noticed a behavioral change. It may be that he's concerned about the trip and what to expect. Give him details about what you'll be doing each day and where you'll be eating. I write out a schedule of each day of our trip, including what rides and shows we're doing when and I have my daughter look at the restaurant menus. It seems to alleviate her fears of the unknown. Try not to worry about the trip being ruined. I know it's hard, but with my daugher, if she senses I'm worried, she worries even more. Things have a way of working themselves out. Have a wonderful trip!

 

[mickey&minniealways]

How old is he. OCD seems to increase in the teenage years. For a few weeks before we go DSs aniety increases about the fireworks. So we let him plan out where he wants to watch them from so he is deciding what is a safe distance for him. Likewise you can tell him what resteraunts you plan on eating at. You can print out menus ahead of time. He can decide what he plans to eat. Let HIM know that the chef will come out to him to discuss what he can and cannot eat.This way he has more control over things. If he has ownership of the situation then he will feel empowered, this will decrease anxiety. At least in our case. DS also has dairy issues, no enzemes to break it down in his body so he needs to always take lactaid pills so he can osorb nutients. Many times they will make something special for people with allergies. He now feels better about things when we go. Hope this helps.

 

[HeatherL]

Thanks so much for all of the great input! We have endlessly talked to him about how awesome Disney is with allergies, and that he will be able to talk to the chef himself. I really like the idea of bring back up food so he won't feel pressured. My younger ds is a picky eater (no allergies though) and we have already decided that they can pretty much eat what they want for the 5 days we are there. I don't want this trip to be about food, and I don't want the food issue to make anyone miserable. Hildarumpole: oh my gosh, your daughter's issues with how people eat so remind me of my son. He is constantly worried about his brother drinking milk near him, touching his food, etc. He eats with the peanut free kids at lunch, but still worries about being exposed with he's allergic too. One day he didn't eat his lunch, and when I asked him why he said it was because his friend next to him had cheetos and he was afraid the cheese dust got on his sandwich.
We have also been preparing him for the airport security, etc. and the lines and crowds. I almost feel like we are talking about it "too much" if you kwim. LIke maybe we should just lay off the preparation a little and focus on the fun. I really really hope this can be a fun trip for the family!

 

[brat]

I have a deck of cards with my kids food alleries and food issues on them.If we eat out anywhere we give the cook/chef/server cards.The cards also include where they can find more info online if they wait it. I also put ingrediants that often have hidden allergens in them on the cards.

 

[maroo]

My older ds has Aspergers and food allergies and is already prone to anxiety. We have been preparing him for our trip for months but talking, showing him pictures, etc. Lately, his anxiety (and other behaviors that are OCD ish) has increased dramatically and a lot of it is about his food. We are working on finding out the cause of this dramatic behavior change, but in the meantime I'm freaking out that our Disney trip is so soon. I'm not sure what else to do other than what we've already one to prepare him. I'm worried that he won't eat when we are there because he's worried about his alleriges. I plan to let him talk to the chef when he/she comes to the table and ask any questions. We are also ordering food from GC to eat in our room. We have been saving for this trip forever and the kids have been so excited. I'm worried that our trip is going to be totally ruined by this recent development in his behavior. Any help would be appreciated. Thanks!

I just want to share a story that may make you feel better.

When we went with Baker on his trip (severe autism, picky eater, doesn't talk)...he loves grilled cheese sandwiches. Anyway...we were eating at 50's Prime Time cafe and had told the waitress that Baker doesn't really talk and were ordering for him off the kids menu (chicken fingers). After just a few minutes of everyone else ordering Baker clearly said, "Grilled Cheese, Please!" to the lady taking the order! We were in SHOCK...Baker just TALKED!!! And he totally asked for grilled cheese!

The waitress was so amazed at our reactions (Baker's Mom was almost in tears) that she had the chef make him a grilled cheese sandwich on the spot and brought it out for him.

It was a great Disney memory for all of us. And just wonderful how Disney handles stuff like that...They can make things for you if you just ask...

 

[bookwormde]

Everything you are indicating comes from anxiety and finding out what is contributing to that is the place to start (not just around food). when our kids are overwhelmed it is ususally not just one thing but many including how they are feeling phyically, what stresses and abuse they are getting at school, new issues that have come up etc.

My advise it to let all the "little things" that he is being "pushed about" go, until his base anxiety improves dramatically and then layer back in slowly one piece at a time.

bookwormde

 

[kaffinito]

To ease ride anxiety there are a lot of POV ride videos on YouTube. Everything from Splash Mountain to Spaceship Earth is on there. It might help a great deal if he can "see" what the ride is before going on it.

As for food allergies, WDW takes them very seriously. As long as they are noted on your ADR's, you shouldn't have any problems with dining. I hope that once he sees how careful everyone is that he will be able to relax and enjoy some of the restaurants.

 

[Luv Bunnies]

We took my DS w/Asperger's to WDW when he was 11. He doesn't have any food allergies, but he and his younger brother are very picky about what they eat.

We read every menu on allearsnet.com when we were planning our trip. We only made ADRs at places where there was something everyone would eat. A few times, I ordered plain bread or a plain hamburger bun and made my son a peanut butter sandwich with Jif Singles that I kept in my bag. Add a drink and a side of fries and he had a meal.

My son is now 15 and his food issues haven't improved much. We've taken several trips to Disneyland and will be going again this summer. They have changed many of their menus lately so I'm once again scouring allears for places we can all eat. Knowing exactly where we're going to go and what they serve reduces the anxiety for all of us. Hope you have a great trip!

 

[SueM in MN]

To ease ride anxiety there are a lot of POV ride videos on YouTube. Everything from Splash Mountain to Spaceship Earth is on there. It might help a great deal if he can "see" what the ride is before going on it.

As for food allergies, WDW takes them very seriously. As long as they are noted on your ADR's, you shouldn't have any problems with dining. I hope that once he sees how careful everyone is that he will be able to relax and enjoy some of the restaurants.

If you look in post #3 of the disABILITIES FAQs thread, there is a link to an awesome video someone made that shows all the WDW attractions in kind of a tour format. The neatest thing about it is that you ‘walk’ past an attraction and have the choice to 'go in’ and experience the attraction or bypass it and go on to the next one.
The video shows a bit of the queue for the attraction, the loading process and the actual attraction (the whole thing for short attractions or a good overview for those longer ones). It’s almost like a video PECs book.

We took my DS w/Asperger's to WDW when he was 11. He doesn't have any food allergies, but he and his younger brother are very picky about what they eat.

We read every menu on allearsnet.com when we were planning our trip. We only made ADRs at places where there was something everyone would eat. A few times, I ordered plain bread or a plain hamburger bun and made my son a peanut butter sandwich with Jif Singles that I kept in my bag. Add a drink and a side of fries and he had a meal.

My son is now 15 and his food issues haven't improved much. We've taken several trips to Disneyland and will be going again this summer. They have changed many of their menus lately so I'm once again scouring allears for places we can all eat. Knowing exactly where we're going to go and what they serve reduces the anxiety for all of us. Hope you have a great trip!

For WDW, the DIS site at wdwinfo.com also has menus for the WDW restaurants. There is a link to the menu site in post 3 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature.
I suggest looking at both the menus from allearsnet and also from wdwinfo.com
Sometimes one will have a more up to date menu than the other site has. And, if both sites agree, it’s more likely that the menu has not changed.

 

[HeatherL]

Thanks! DS really loved that video. Does anyone have suggestions for a video of what airport security looks like? I don't want any of the TSA pat down non-sense, just a regular video of a person taking off their shoes, putting stuff in bins and walking through the scanner. DS is getting kind of anxious about that part of it too.

 

[SueM in MN]

Thanks! DS really loved that video. Does anyone have suggestions for a video of what airport security looks like? I don't want any of the TSA pat down non-sense, just a regular video of a person taking off their shoes, putting stuff in bins and walking through the scanner. DS is getting kind of anxious about that part of it too.

There are some video links in the disABILITIES FAQs thread from the TSA that were made for kids. I would suggest previewing them and seeing if you think they would be appropriate for your child. Look in post 1 of the disABILITIES FAQs thread to find which post is about air travel.

Some posters have also had great success with making a pre-WDW trip to the airport to practice going thru security or just look at what it’s like. You would arrange that thru your local airport.