Difficult to feed child....

[Bitsmommy]

Hi all... I need some advise regarding my hard to feed little man. He is 2 years old and has been in feeding therapy of some type since he was a out 3 months old. He has a g-tube but we are really working on getting him to eat with us at each meal. I don't want 2 weeks at Disney to cause a huge setback in our world! He will only eat certain foods...it isn't that he has allergies, but he does have sensory difficulties and will not allow certain foods to be even placed on his plate. Before I go any further, If you have never dealt with this, you don't understand that it isn't simply a matter of proper parenting. So, please no snarky comments....I say that with the utmost of respect and love for those of you on the DIS, and as a person that is up to my eyeballs in " they will eat when they are hungry comments."

My question is, can this be treated like food allergies in the respect that I can speak to a chef and they can prepare something for him that he might eat or at the very least not flip out over? I know he is under 3 and I have no problem paying for his meal since he wouldn't be sharing off my plate, but this is his vacation too and I would like him to enjoy it also. Struggling with him to eat is not enjoyable in the least!! Thanks for any and all constructive advice! You guys are awesome!!

 

[goofieslonglostsis]

No need to explain, know the subject all to well. Didn't have to deal with it myself, but know it from closeby.

In your situation I would contact the regular allergy mail option and drop this question there. Previous experiences after all might sometimes be "old" as in things have changed since. Also it might be beneficial to get some more detailed info of locations where things might be easier doable and which places are more painfull because of logistics or whatever.

This is a medical need, the fact that eating therapy teams are part of hospital care says enough after all. His age might be a hurdle but you are proactive enough to want to pay, so when communicating that clear, nice and upfront enough I should think there should be some options to work on viable options for both DS and the restaurant. But in all honesty, I would contact them directly to see how "known" they are with the subject, even if it is just to get a feel for how easy it might be or how prepared you might have to be to go on the explain-auto-mode.


Also, discuss it with the treatment team. I know of kids that are far enough into their treatment that a surrounding like WDW can sometimes be a positive trigger to expand things by the child deciding they want to and have a positive experience. Obviously I would never advice pressure knowing the subject, but I know for some the combination of caracters around and buffet would result in them venturing out besides their norm and touch, lick, keep in mouth or even swallow something that until then was a no go. And again, I would discuss it first to make sure you know what to do and don't do at the level he is at right now so it indeed stays positive as you are aiming for.

 

[rolltide13]

Hello. I have a son who is going to be 10 this fall. He has a chromosome disorder and one of his symptoms is major oral sensitivity, combined with the fact that he doesn't understand to chew.

I have taken him to Disney several times, and every time we go, we have no trouble asking to speak to the chef and they have always accommodated our needs. Some examples of this were, A teryaki chicken dinner blended up into a bowl at Teppan Edo, and the chef making him a chicken alfredo pasta purred dinner at Sci-fi, when chicken alfredo isn't even on the menu. And, BTW, not that it mattered to me much, but both times they charged us for kids mac and cheese instead of an adult entree.

In short, ask to speak to a chef, explain your child's needs and they will do everything in their power to accommodate you. Disney's willingness to handle my son's needs are the #1 reason why I take him there every chance I get. He loves it, I love it, and they always take exceptional care of him.

If you want any additional information, please feel free to PM me with questions.

Have a great time!

 

[Bitsmommy]

Thanks guys! This makes me very happy!! This is our 3rd trip to Disney! It is the second trip with our little man, but only the first where he is actually eating food!! I love Disney because they accommodate so well, this will just make me love them more. The problem with my guy is that he looks like he has no medical problems. However, his little body has gone through so much!! So, people just think he is being a "brat" and not someone with a legitimate medical need!

 

[rolltide13]

My son doesn't "look" like he has special needs, but it is what it is. You are going to run into people who don't understand, because they don't live our lives or lifestyles. Don't worry about them. I have run into people who have given me a hard time about not parking my stroller (which is clearly marked as a wheelchair) and taking it into the lines on rides and attractions, but I just ignore them.

My favorite story is when we were going to get on IASW and we stopped at the entrance to show the cast member our GAC, when I accidentally was blocking the regular entrance. Some lady very rudely decided she needed to point out to me that "the sign clearly says stroller parking is over there!". And then she proceeded to elbow me out of the way and hurriedly take her family into the regular line. I was pretty upset at first, but once the cast member directed us down the wheelchair line, and we pretty quickly ended up by the boats, I noticed her way in the back of the line, glaring at me. In the calmest manner I could possibly muster, I just waved at her and smiled, as I loaded my son onto his favorite ride, and we took off. When we returned, she was near the front of the line, and I waved to her again as we pulled up to get off of the boat. Just my little way of saying "you know what" to her.....

My point is, you aren't at Disney to please anyone else, or worry about what anyone else thinks. Make the trip magical for your family, and do whatever it takes to ensure you and your family have a great time.

 

[Mousequake]

Thanks guys! This makes me very happy!! This is our 3rd trip to Disney! It is the second trip with our little man, but only the first where he is actually eating food!! I love Disney because they accommodate so well, this will just make me love them more. The problem with my guy is that he looks like he has no medical problems. However, his little body has gone through so much!! So, people just think he is being a "brat" and not someone with a legitimate medical need!

I understand EXACTLY how you feel! My DD4 has been G-tube fed since 9 months old and is just now worked through her sensory issues enough to start being interested in food. The problem now is that she just doesn't have the mechanics of chewing and swallowing down enough to be able to sustain herself, so she is still on the tube for now. From all outward appearances, she has no medical problems, so dealing with things like bringing large quantities of formula on flights has been a s nightmare because TSA thinks she's too old for formula. I try to explain her situation to other parents, and they're like, "yeah, my kid's a picky eater too." They just don't get that this has NOTHING to do with picky eating. Is hard to make people understand. .

While I haven't made any special dining requests with Disney, I have no doubt that they would bend over backwards to accommodate your needs. They're good like that.

 

[MSSANDRA]

Ours is a little different as it is allergies but we find WDW to be so accommodating. As long as you can explain what he needs, no need to explain why. Just simply state that he needs....XYZ and how can they accommodate that. Expect to pay but you might be surprised how kind some places can be. One place we found cookies that our DS could have, very unusual, we expressed our delight and were rewarded with plenty of EXTRAS for later! If there is no real restrictions, you might expose him to all the delightful foods at WDW and just see if he catches the magic and tries something. I know it is NOTHING like the issues you deal with but my food allergy kid is VERY cautious with new foods and tried several new things on our last trip cause Mickey likes those foods!

Prayers for a wonderful trip!!!!

 

[utterrandomness]

They just don't get that this has NOTHING to do with picky eating. Is hard to make people understand. .

I wish more people did understand this. I'm an adult now, and there are still foods I have sensory issues with. People think I just never grew out of being a picky eater, but that's just not the case. I eat all kinds of things, just nothing slimy and squishy or watery-with-seeds.

 

[mymickeyfans]

Hi,
I know exactly what you are going through..my DS now almost 8 has pretty severe oral sensory issues as well. It used to drive me crazy when people would say "if he's hungry enough, he"ll eat". This certainly wasn't the case. We spent years in feeding therapy and he's fnally made it onto the weight chart..only at 7%, but hey, he's on it!!! He has gotten better with age, but most meals are still a struggle. When we used to travel, our feeding therapist would tell us to bring those Pediasure drinks. Four of those a day is equivalent to all their daily requirements. Hope this is helpful.

Have a great trip. We're heading down in October and I'm hoping we'll be able to get him to eat something other than chicken nuggets and french fries!

me
DH
DS(7.5yrs)
DD-(3yrs)

 

[Schmeck]

Hi all... I need some advise regarding my hard to feed little man. He is 2 years old and has been in feeding therapy of some type since he was a out 3 months old. He has a g-tube but we are really working on getting him to eat with us at each meal. I don't want 2 weeks at Disney to cause a huge setback in our world! He will only eat certain foods...it isn't that he has allergies, but he does have sensory difficulties and will not allow certain foods to be even placed on his plate. Before I go any further, If you have never dealt with this, you don't understand that it isn't simply a matter of proper parenting. So, please no snarky comments....I say that with the utmost of respect and love for those of you on the DIS, and as a person that is up to my eyeballs in " they will eat when they are hungry comments."

My question is, can this be treated like food allergies in the respect that I can speak to a chef and they can prepare something for him that he might eat or at the very least not flip out over? I know he is under 3 and I have no problem paying for his meal since he wouldn't be sharing off my plate, but this is his vacation too and I would like him to enjoy it also. Struggling with him to eat is not enjoyable in the least!! Thanks for any and all constructive advice! You guys are awesome!!

If you are staying onsite, the resort rooms all have fridges, so you could bring some of the things he is used to eating. Bring a small softsided cooler and some ziploc bags that you can fill with ice, and you can bring a few things each day into the parks.

 

[Bitsmommy]

If you are staying onsite, the resort rooms all have fridges, so you could bring some of the things he is used to eating. Bring a small softsided cooler and some ziploc bags that you can fill with ice, and you can bring a few things each day into the parks.

We are staying on site and we do bring things for snacks and you supplement lunch, ect. But at a sit down dinner, I want him to be able to order just like everyone else. As he grows older it becomes more difficult to bring his meal into a table service situation in the real world, not Disney World. Trust me, I hear it from servers, people at the table beside us, ect..l it makes me crazy when I am accused of being to "cheap" to buy my son a meal. When in reality, I have spent thousands of dollars trying to teach him that food doesn't hurt and it is ok to eat.

 

[ppony]

I completely understand. We haven't had the g-tube but he's been diagnosed w/ a serious feeding disorder and I theorize that because of his lack of proper nutrition despite all our efforts, he looks like a 3 year old but is almost 5. I just wanted to tell you that especially here in this forum, my experience has been that people here are so understanding and not quick to judge. THANKFULLY. Gosh knows we get plenty of that "out there".

Disney is the BEST!!!! I wish you the best on your trip.

 

[Schmeck]

We are staying on site and we do bring things for snacks and you supplement lunch, ect. But at a sit down dinner, I want him to be able to order just like everyone else. As he grows older it becomes more difficult to bring his meal into a table service situation in the real world, not Disney World. Trust me, I hear it from servers, people at the table beside us, ect..l it makes me crazy when I am accused of being to "cheap" to buy my son a meal. When in reality, I have spent thousands of dollars trying to teach him that food doesn't hurt and it is ok to eat.

Oh good - about bringing snacks that is, not the cost of therapy - I didn't do this on our first trip on our first day in the parks, and my little one got so hungry! I thought we'd be able to find one thing at the parks she would eat. She tried a few things, bless her, but I ended up buying her a lollipop to get her back to the room to get her some snacks. I think she lived on Cheerios that trip. Good thing it was only for 4 days.

 

[Bitsmommy]

Oh good - about bringing snacks that is, not the cost of therapy - I didn't do this on our first trip on our first day in the parks, and my little one got so hungry! I thought we'd be able to find one thing at the parks she would eat. She tried a few things, bless her, but I ended up buying her a lollipop to get her back to the room to get her some snacks. I think she lived on Cheerios that trip. Good thing it was only for 4 days.

The good thing is that we have prescription formula that he can drink or have pushed through his tube. I plan on giving him at least one bolus of water per day while we are there to make sure that he stays hydrated. But, if I tube feed him more than I HAVE to it will obviously make him eat less by mouth. Which will cause us to be set back with regard to actually eating food.

About therapy we actually sold our house and moved closer to his therapy hospital because we were driving over 100 miles PER DAY just to get to therapy. I don't even want to think about how much money we have spent on fuel, food, things to feed him with and therapy.... I MAY DIE!!

 

[ladyjubilee]

We are staying on site and we do bring things for snacks and you supplement lunch, ect. But at a sit down dinner, I want him to be able to order just like everyone else.

My son is food particular. As far as he is concerned Disney's variation on the old standby-chicken nuggets-is "wrong" and isn't food. So I dont know if it helps or not, but we found that CM were very helpful even at counter service. I will say, we made sure not to go at the most crowded times of day, mainly to avoid crowds, but I think that helped them "help" us. They were able to craft variations on the standard Disney fair that he would eat. Didn't happen everywhere, but it never hurts to talk person to person and explain what you need.

 

[Bitsmommy]

Thanks guys. This makes me a lot more confident regarding our table service meals! I am so happy that Disney doesn't fall into then cookie cutter world that doesn't recognize unseen disabilities.

 

[wendylovesdisney]

Just wanted to say *hugs*!

 

[Mousequake]

Just wanted to say *hugs*!

Yeah, I wanted to add that as well! Having a kid with severed feeding issues is thought, tough work, and it's nice to know that at least a few other people understand!

 

[joanchris]

Regardless of the reason (allergy, physical disability etc) your child still can not eat a "regular" meal, I can't imagine them not accommodating you. As someone else mentioned, as long as you're clear you are willing to pay for his meal, I imagine a small charge for a child meal is all you'd be asked to pay for, and maybe nothing at a buffet. I hope you have a wonderful vacation!

 

[SueM in MN]

There are children who have a 'if he is hungry enough, he will eat' situation. ( I had worked with families with children like that when I worked in public health. ) They had different issues around eating - it was more power struggle, which is probably the point of view where some of the advice the OP has gotten is coming from. But, even with those issues, it's not as easy as just putting the food out and the child will eat it.

A child with severe enough problems to need a feeding tube is a whole different issue. Those kids have either had problems with food their whole life, have physical problems or have oral defensiveness issues that make eating difficult or impossible.

We were at WDW about 6 yrs ago with my niece and her 4 yr old daughter who was extremely orally defensive and would only eat certain foods and certain textures.
We did not need to involve the chef because we could find something she would/could eat, but some people may need to.
I would suggest emphasizing being very clear what it is that you need - there is a lot of room for misinterpretation or misunderstanding.
I would also emphasize that it what you need is a medical need for a partially tube fed child who is learning to eat by mouth.
They will purée any foods that are available in the kitchen, so if blending the food up will help, that would be available at any full service restaurant.

Here are some things we did with my niece that might be helpful:
At every place we ate, we asked for an empty plate (table service and counter service). This allowed her mom to put only the items her daughter would eat onto the empty plate. She also put tiny portions on the plate - a tiny portion is less intimidating to a child.

We ate a number of times at buffets. That way, she could see the food and have tiny portions of foods that met her requirements. Even with that, we had an extra plate. Because she could see and choose, she did try some new things. The buffets also had a lot of extra noise/activity, which helped distract from the food.

She also saw some of us eating Mickey bars and wanted to try one (mostly because she wanted to bite off Mickey's ear). Her mom peeled off the chocolate coating and she actually ate most of the ice cream bar. That was the first time she had ever eaten ice cream! She was very surprised it was cold and sweet. She thought it would taste like mashed potatoes!