Tuesday, September 15, 2009

Group therapy session: feeding kids with special needs on the go

On Monday's post about Curious George blueberry pancakes, Amy came out of the lurking closet (yay, Amy!) to ask how we handle feeding Max when we travel. She wrote, "As Emma is getting better, she is longing to go to Disney World. To be frank, it will be a dream come true (on many levels) if we can make this happen.... I am curious what you feed Max on trips. Where you eat? How accommodating are theme park or cruise people about cooking foods to a soft state??"

This one's easy. Both because I've learned to call ahead, and also because places are remarkably accommodating. Also, Max really likes to eat (a chip off the old block); here he is sampling North Carolina BBQ on our recent trip to Duke University for his stem cell infusion.

If we are going to a hotel, I will call a few weeks before and ask the front desk who to speak with about special dietary needs. Then I'll explain about Max and why he needs finely-chopped food. That said, give us some mayo or ketchup and we can make nearly any food out there edible for Max (though I doubt that would win us an Iron Chef competition).

I will also ask if we can have a fridge in the room, free of charge, because of Max's special needs; that enables us to shop for foods in local supermarkets. Or we'll pick up some canned foods. Max is a big fan of Chef Boyardee Chicken and Rice and Chef Boyardee Mini Ravioli, which come with snap-off lids. While they're high in sodium, I don't think they're the worst foods to eat, especially on vacation. I'll ask room service to heat them up; once you explain that you have a child with special needs, they usually agree. Or I'll see if there is some sort of microwave for guest usage in the hotel. Once, I made Dave dash out of a motel room to the Denny's across the street and ask them to heat up something for Max. They did! We have no shame. Since having Max, that's pretty much become our unofficial motto.

This past May, we went on a Disney Cruise, and there were so many food choices Max actually put on a few pounds (um, us too). Our waiter made sure we got the desired mushy texture. When you book the cruise, just let them know about any dairy-free, gluten-free, sugar-free or peanut-free restrictions. Little-known secret: room service on the cruise is free! Just be warned, your child may get used to it. Now whenever we go to hotels, Max demands room service.

We've also been to Disney World. Here's Max at a character dinner in the Crystal Palace:

There are a ton of restaurants at Disney. Check out this complete list of menus for every single eating establishment there, down to the kiosks. For specific advice, contact Disney at SpecialDiets@DisneyWorld.com or 407-824-5967; also note their Special Dietary Requests page.

I hope this is helpful! I'll bet others here will have more advice. Speaking of which, I'm thinking of starting a regular "group therapy session." You ask whatever q is on your mind, I'll put it up in a post and everyone can weigh in. So, share advice for Amy here as well as any questions you'd like answered about raising kids with special needs and/or the meaning of life.


  1. I still can't get past "free room service".....amazing!

  2. We don't have special needs kids, but they are picky eaters and I refuse to pay $8 for mac and cheese. We bring along a fry daddy deep fryer and use it in our room to make pasta, rice, soups, etc. You just have to be very, very careful to not let the kids near it when you're boiling water.

  3. Ok Ellen, You know I'm gonna ask... Just exactly where was Mr. Max sampling the NC BBQ? And I certainly hope that you guys didn't slather something on that BBQ! LOL! This is such a hotly debated subject in our area. It must be vinegar based w/o anything else added to it! LOL again! Nice pic, anyway!

  4. Great post, Ellen! We live in the land of restaurants and food is a huge part of the culture here in Louisiana. I pretty much stopped to going to restaurants for awhile though because there wasn't any place for Charlie to sit. My mom won't be kept from her Tuesday Chicken Fricasse however and just hauled Charlie's seat in the restaurant. No one batted an eye then and they still don't. Restaurants have seen it all when it comes to kids and their needs. Just gotta ask!

  5. Timely subject for me! We're taking Elijah's first plane ride in a couple weeks and we just got back from an 8-day road trip to attend my cousin's wedding. I've got "feeding on the go" on my brain!

    I bring food with me wherever I go. I place some foods in ziplock baggies in my suitcase (things like cream of rice cereal or other specialty things I know will be hard to find once I get to my destination). If it's a road trip, I bring frozen prepared meals from home and stop for ice to keep it cold. If we stop at a restaurant, I explain that Elijah has severe food allergies and ask if they could heat up his food for me. Just like Ellen, I've found that people are really accomidating.

    I request a room with a microwave and fridge (never thought to ask for it free of charge, Ellen! I'll be trying that!). I also bring a small amount of dish detergent to clean my dishes (woohoo - aren't I on vacation?!) and a microwave safe plastic bowl with cover to heat up things in our room.

    Flying, however, will be a different story. I'd love any advice on feeding and flying. I won't be able to bring all of his food, so I'll have to go shopping when we get there. I'm really nervous about flying with Elijah, but he handled 4 days in the car like a champ, so a three hour plane ride should be fine. Any advice on flying and bringing food (liquids) on the plane would be much appreciated.

  6. This is always tough for us and one of the main reasons we've become hermits. LOL! I make Gavin's food and he's become assustomed to homemade. When I try to give him a jar, he's acts horrified like, "Are you seriously thinking I"m going to eat processed food? Do you now know who I am?" He's such a snob. So, it makes it difficult to travel with his food - keeping it cool, finding a place to heat it, etc. Big pain. That's okay - before I know it he'll be sixteen and I'll miss these days and have a whole bunch of new, probably worse, complaints. ;-)

  7. Disney is INCREDIBLE when it comes to making sure that everyone is happy. We went for the first time when Jacob was a baby and had severe food allergies and my diet was restricted (nursing). I was dairy, soy, egg, nut, wheat, fish, beef, pork and oat free. Disney World had plenty of food to feed me. One of the chefs came out (they generally came out to talk to me about what I could and could not eat) and she thought what I was doing was wonderful and made me lunch to go...we were at breakfast. I could rave and rave and rave about Disney World.

  8. When we were at Disney I was concerned about Jake getting "healthy" calories since he is borderline underweight.
    It was amazing how many choices the buffets have. I was thrilled.
    When I also explained his special needs they were more than accomadating in allowing us to take a few finger type foods for later, ie applesauce in an unopened container, bananas, wrapping up bread. This came in handy for snacks and allowed him to eat healthier.
    It also allowed him to have a hot dog every day for lunch. It takes so little to make everyone happy.

  9. We never had to ask for any special foods for graham... just got weird looks as we gave him a tube feed in the middle of a restaurant...

  10. My kids don't have special diets, but we travel (when we do, rarely) with a small Coleman cooler that is filled with our meals. A lot of times I make food ahead and freeze it (that keeps the rest of the stuff cold, too, while we travel), and we always stay in fridge/microwave hotels. We do all our cooking in the room, too--it just gets too expensive to eat out all the time, plus, one of our group is sometimes a loudmouth in new situations and doesn't adjust easily to new surroundings.

    I have a Joyce Chen microwave rice cooker that is a good thing for reheating all sorts of stuff in the microwave, and I also have a microwave pasta cooker that works GREAT. It's just a plastic box, and when you drain the pasta, you put the top on it and the drain holes are in the top. I also have a little electric fry pan that I use, and sometimes I bring a toaster. Between using the microwave for warming, reheating, and so on, and the fry pan for making eggs and burgers, we do OK.

  11. Lots of great ideas (as always!).

    When we were travelling in Indonesia with BC when he was younger, the one thing I really really wish we'd taken was a portable booster seat. It would have made our lives a hell of a lot easier. I'd forgotten that we were going to the land of no high chairs. At 2, he lacked the support to sit in one of the regular chairs in most restaurants and cafes and we hated for him to sit in his stroller so far away from us, so he sat on our knees. A portable booster seat (like this: http://www.productreview.com.au/showitem.php?item_id=31646) would have given him independence and made all our meal times better!

  12. I like the group theaphy session idea I would love to help you answer ?

  13. Ellen, you are so awesome. Much thanks to everyone. Great ideas!! I am really amazed that you can boil water in a Fry Daddy--never thought of that one!! I am especially excited to hear about Disney being that accommodating. My dream is to not have to cook like a mad woman and freeze food for long hauls. Of course, I love my Emma--so whatever it takes. I just like having options to cut down on some of my stress, and these ideas are great. I also never really thought about the cool gadgets for the microwave--didn't know there was such a thing. I really, really need to get out more.

    I love the group therapy idea!!

    Thanks again.

  14. Yes, awesome advice here! Lisa, don't worry about flying with Elijah. While you can't get anything over three ounces of liquid past security, you can just buy milk/juice/bottled water/vodka (hee, hee) in the area with stores. Also, once you board the plane, even though you may be in coach a flight attendant will still get you a drink if you request it. In terms of food, we've had great luck packing lunches in plastic containers I've gotten from the dollar store and just toss afterward. For Max we'll pack avocado, banana and chopped chicken, tuna or pasta salad; sometimes, I will freeze the container for an hour or so before we leave so it stays cold for a while. Max LOOOOVES eating on the plane. Oftentimes, when we tell him we're going on a trip on a plane, for weeks afterward he'll tell us that he can't wait to eat on the plane! And Candace, the place where we had BBQ was Q Shack, I never properly thanked Brandie from nanaslug for that recommendation. We loved it so much we went TWICE! Yes, I know, it's Texas BBQ, not North Carolina BBQ, but try telling that to Max!

  15. Hi ellen,
    Nice to meet you too! How did you like your visit to Pooh's Corner? hehe

    It's always great to make new friends, I'm glad you stopped over.


  16. We ate at the Crystal Palace when we were at Disney a couple months ago and the chef was just wonderful about taking me around the food buffet and showing me which items were gluten free for Kayla! Great experience!

  17. I so need to read every word of this blog and take notes to be prepared for Jeremiah! :) Love the picture at Disney :)



Thanks for sharing!

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