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Old 06-01-2012, 06:48 PM   #31
Vanvmom
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Our daughters are adopted. They were born at 2 & 3 lbs, 9 weeks premature. One was then severely shaken by her bio mom right after discharge from the NICU. Sensory issues are common in premature children, and intensified from the brain injury at such a tiny size.

I've researched it a LOT! I've no idea why chicken nuggets and mac & cheese seem to be favorites, but kids differ on what type/brand of nuggets and/or mac they will eat. I know with my daughters texture is the major issue. One of my daughters will touch something to the tip of her tongue and say "no" and won't eat it. The daughter that was shaken refused to eat as her only way of exerting control in her life - she was given so many meds orally each day that she hated people putting anything into her mouth. She is now on a feeding tube for most of her calories, but still "samples" and eat about 8-10 ounces of table food per day. If we can get her to eat more than about 5 bites at a meal we celebrate!

Many people beleive it is a parenting issue, and that if the child is hungry enough they will eat. Nope! With most sensory issues the child is truly hungry but can't tolerate the texture of the food and it only frustrates them that they are not being given food they can eat. Sort of like if you try to give a newborn a piece of steak. Their brains just can't process what to do with the texture of the food, it is not a willful defiance as some people would like to believe.

As for how you deal with it - we feed her before we go out to eat and order something she will tolerate at restaurants, or we leave the girls with a babysitter. On trips, we bring food. When we cruised last May with our twins, we learned they won't eat melon. The fruit they love most is berries and mandarin oranges, or applesauce. So, this trip we are bringing applesauce pouches.

My daughter likes hamburger, but only from In&Out, and she can tell the difference if we try to give her something from somewhere else. She loves cut up pears but can't tolerate biting into a slice of pear. I remember the first time she ate mac and cheese in a restaurant we called the chef out to ask for his recipe so that we could make it at home as it was the first time we'd been able to get her to eat mac and cheese. Wouldn't you know, it was Nestle' prepackaged something for the restaurant chain.
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Old 06-01-2012, 06:52 PM   #32
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Also, as someone else posted, Disney is great with special needs, however our experience is that Disney Cruise Line is NOT that great with special needs. It is ALL in who you talk to on the cruise and what they are willing to do to accomodate. We found one or two helpful people on the Wonder, but over all, guest services was less than helpful with the needs we had last May.
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Old 06-01-2012, 07:02 PM   #33
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Originally Posted by Vanvmom View Post
Our daughters are adopted. They were born at 2 & 3 lbs, 9 weeks premature. One was then severely shaken by her bio mom right after discharge from the NICU. Sensory issues are common in premature children, and intensified from the brain injury at such a tiny size.

I've researched it a LOT! I've no idea why chicken nuggets and mac & cheese seem to be favorites, but kids differ on what type/brand of nuggets and/or mac they will eat. I know with my daughters texture is the major issue. One of my daughters will touch something to the tip of her tongue and say "no" and won't eat it. The daughter that was shaken refused to eat as her only way of exerting control in her life - she was given so many meds orally each day that she hated people putting anything into her mouth. She is now on a feeding tube for most of her calories, but still "samples" and eat about 8-10 ounces of table food per day. If we can get her to eat more than about 5 bites at a meal we celebrate!

Many people beleive it is a parenting issue, and that if the child is hungry enough they will eat. Nope! With most sensory issues the child is truly hungry but can't tolerate the texture of the food and it only frustrates them that they are not being given food they can eat. Sort of like if you try to give a newborn a piece of steak. Their brains just can't process what to do with the texture of the food, it is not a willful defiance as some people would like to believe.

As for how you deal with it - we feed her before we go out to eat and order something she will tolerate at restaurants, or we leave the girls with a babysitter. On trips, we bring food. When we cruised last May with our twins, we learned they won't eat melon. The fruit they love most is berries and mandarin oranges, or applesauce. So, this trip we are bringing applesauce pouches.

My daughter likes hamburger, but only from In&Out, and she can tell the difference if we try to give her something from somewhere else. She loves cut up pears but can't tolerate biting into a slice of pear. I remember the first time she ate mac and cheese in a restaurant we called the chef out to ask for his recipe so that we could make it at home as it was the first time we'd been able to get her to eat mac and cheese. Wouldn't you know, it was Nestle' prepackaged something for the restaurant chain.
Vanvmom,

Thank you for your post explaining the in's and out of the condition (if that is the right term)

I wish both of your daughters the best of health and admire your patience and dedication.

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Old 06-01-2012, 07:16 PM   #34
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Originally Posted by extechie rbd/wdt View Post
Vanvmom,

Thank you for your post explaining the in's and out of the condition (if that is the right term)

I wish both of your daughters the best of health and admire your patience and dedication.

Ex Techie
No worries. Sensory issues are something many people don't fully understand, and explaining sensory kids helps people better tolerate their differences.
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Old 06-01-2012, 07:21 PM   #35
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No worries. Sensory issues are something many people don't fully understand, and explaining sensory kids helps people better tolerate their differences.
I'm glad I understand it better now

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Old 06-01-2012, 08:26 PM   #36
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No worries. Sensory issues are something many people don't fully understand, and explaining sensory kids helps people better tolerate their differences.
Thank you so much for telling us about the disorder. I had my DD read your post since she's an Early Childhood Ed major. She's worked in a daycare and never heard of it and it has made her aware of an issue that she may encounter in her career.
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Old 06-01-2012, 08:43 PM   #37
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Quote:
Originally Posted by Vanvmom View Post
Our daughters are adopted. They were born at 2 & 3 lbs, 9 weeks premature. One was then severely shaken by her bio mom right after discharge from the NICU. Sensory issues are common in premature children, and intensified from the brain injury at such a tiny size.

I've researched it a LOT! I've no idea why chicken nuggets and mac & cheese seem to be favorites, but kids differ on what type/brand of nuggets and/or mac they will eat. I know with my daughters texture is the major issue. One of my daughters will touch something to the tip of her tongue and say "no" and won't eat it. The daughter that was shaken refused to eat as her only way of exerting control in her life - she was given so many meds orally each day that she hated people putting anything into her mouth. She is now on a feeding tube for most of her calories, but still "samples" and eat about 8-10 ounces of table food per day. If we can get her to eat more than about 5 bites at a meal we celebrate!

Many people beleive it is a parenting issue, and that if the child is hungry enough they will eat. Nope! With most sensory issues the child is truly hungry but can't tolerate the texture of the food and it only frustrates them that they are not being given food they can eat. Sort of like if you try to give a newborn a piece of steak. Their brains just can't process what to do with the texture of the food, it is not a willful defiance as some people would like to believe.

As for how you deal with it - we feed her before we go out to eat and order something she will tolerate at restaurants, or we leave the girls with a babysitter. On trips, we bring food. When we cruised last May with our twins, we learned they won't eat melon. The fruit they love most is berries and mandarin oranges, or applesauce. So, this trip we are bringing applesauce pouches.

My daughter likes hamburger, but only from In&Out, and she can tell the difference if we try to give her something from somewhere else. She loves cut up pears but can't tolerate biting into a slice of pear. I remember the first time she ate mac and cheese in a restaurant we called the chef out to ask for his recipe so that we could make it at home as it was the first time we'd been able to get her to eat mac and cheese. Wouldn't you know, it was Nestle' prepackaged something for the restaurant chain.
Now that we have In N Out here in Texas I have the same problem with "other" burgers. You Gotta love In N Out Animal style all the way

Just curious do children grow out of this or does it "lessen" as they get into their teens or adult hood?
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Old 06-01-2012, 09:11 PM   #38
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For some it gets better and some even more restrictive over time. For us it became apparent when DS was an infant. He would look at certain foods and gag. We would put foods on his high chair tray and he would study them for 10-15 minutes before sticking a finger in for a taste. He is now 8 and it has been hard but he has gotten much better. For kids with these types of issues there are levels of food tolerance. You start with a food just being at the same table with the kid. Then move to touching the food with their finger. Then move on to smelling it. Then placing on the lips, follows by touching the food inside the mouth etc.. It is a long process to build up the tolerance, but it works. Another thing is to build on what the child knows, varying the food slightly over time. I am happy to report that even though DS ate his share of chicken strips, fries, pizza and ice cream on our cruise on the Fantasy he also picked out one food item from the menus before going that he thought he could try and he psyched himself up for it and tried the Wild Boar and really liked it. For all of the parents out there it does get easier, but I still look forward to the day when he will either eat school hot lunch or a sandwich for lunch and I can retire the thermos that goes to and from school with him everyday.

There is also a genetic componant. I had a super strong gag reflex as a child and still have food issues which I have been careful not to let my children see. It's clearly nature and not nurture.
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Old 06-01-2012, 09:14 PM   #39
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Thanks!

Vanvmom - thanks for the useful information. I have a 5 yr old DS with DS. He was born at 36 weeks. He will only drink juices or silk milk. No water and nothing with fizz. We always go prepared. And he can only drink from a straw so we carry those also. Do your kids have issues with beverages?

I could have written the op. My DS will only eat Tyson chicken nuggets, Kraft singles, yogurt and Cheerios. I understand what you are dealing with. He would starve before eating other things. We do supplement with vitamins. Hope you enjoy your cruise.
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Old 06-01-2012, 09:19 PM   #40
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Quote:
Originally Posted by Tinknalli View Post
For some it gets better and some even more restrictive over time. For us it became apparent when DS was an infant. He would look at certain foods and gag. We would put foods on his high chair tray and he would study them for 10-15 minutes before sticking a finger in for a taste. He is now 8 and it has been hard but he has gotten much better. For kids with these types of issues there are levels of food tolerance. You start with a food just being at the same table with the kid. Then move to touching the food with their finger. Then move on to smelling it. Then placing on the lips, follows by touching the food inside the mouth etc.. It is a long process to build up the tolerance, but it works. Another thing is to build on what the child knows, varying the food slightly over time. I am happy to report that even though DS ate his share of chicken strips, fries, pizza and ice cream on our cruise on the Fantasy he also picked out one food item from the menus before going that he thought he could try and he psyched himself up for it and tried the Wild Boar and really liked it. For all of the parents out there it does get easier, but I still look forward to the day when he will either eat school hot lunch or a sandwich for lunch and I can retire the thermos that goes to and from school with him everyday.

There is also a genetic componant. I had a super strong gag reflex as a child and still have food issues which I have been careful not to let my children see. It's clearly nature and not nurture.
Thanks for the info hope your son continues try new things. BTW he is one up on me in having tried the wild boar, I will now have it on our July cruise
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Old 06-01-2012, 09:34 PM   #41
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[SNIP] he also picked out one food item from the menus before going that he thought he could try and he psyched himself up for it and tried the Wild Boar and really liked it.
Thats so cool that he tried something and liked it! Great confidence builder for him to try pork or beef in the future! And on a Disney Cruise!
I imagine you were overjoyed that he tried it and liked it!


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Old 06-01-2012, 09:41 PM   #42
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Thats so cool that he tried something and liked it! Great confidence builder for him to try pork or beef in the future! And on a Disney Cruise!
I imagine you were overjoyed that he tried it and liked it!


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We were very happy! This was one of the building on something familiar things. He will eat pork tenderloin so after looking at pictures it wasn't that much of a stretch. 2 years ago it probably would not have happened!
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Old 06-01-2012, 10:19 PM   #43
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It's funny, my sensory kid also had very specific food needs (I.e. battered nuggets but not breaded nuggets) and expanded his tolerable foods at WDW, adding one food nearly every trip... For a few years I think that was the main reason DH would agree to go... DS also has some food allergies, so that further complicates things...
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Old 06-02-2012, 10:01 AM   #44
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My DH had sensory issues with food as a child - and still has food texture preferences and won't eat some things because of texture - for example, he loves the taste of coconut, but won't eat most coconut foods because he can't stand the texture of it. His issues were also exacerbated by severe (deadly) food allergies to some rather common foods, and as he's gotten older he's developed oral sensitivity to other common foods.

He *loves* trying new things on the cruises because he doesn't feel too guilty if he doesn't like something - he knows he can get something else he can eat! The buffets are great because he can usually get something he likes, and something new to try. He will often get stuff for lunch from the Kid's buffet (they usually have pizza, chicken strips/nuggets, mac&cheese, cookies, etc. on a separate line on the Wonder/Magic - don't know about Dream/Fantasy) but will also usually try something different - because he can. I know the OP said vacation isn't a the place to try new foods, but for us we've found it's the perfect time. Even our DD is more willing to try something new on vacation, because everything is new and different. As long as there's something to fall back on, I've found they both can be a little more adventurous than they would be at home.

That said - I'd also plan to bring stuff you know she will eat. I liked the suggestion of pre-cooked Kraft or trying to make easy mac without a microwave - all you really need to cook pasta is to steep it in boiling water for ~8 minutes so there's no reason you shouldn't be able to make it without a microwave or hot pot. Goldfish are easy to carry on, as are individual boxes of the cereals she likes. I'd pack it all in one suitcase - then, as it gets eaten, you have more room to bring home souvenirs!

Definitely contact DCL as well, as they may have more suggestions for accommodation. You can also go to the Dining Change location when you first get on the ship and see if you can talk to a head waiter or chef and see if there's anything that the land-based offices had wrong or anything else they can do. It's really the head waiter's job to make sure you have the best dining experience, and to do what they can to accommodate these kinds of things, so talking to them directly as soon as you can - and then again to your head waiter at dinner - is the best thing you can do. If she is willing to eat the DCL Mac & Cheese, then they will make sure she has it at every sit-down meal. It's probably worth trying at least once to see.

Can you get a feel for whether she'd like it or not from a picture? I found this one of the DCL kid's Mac&Cheese (no idea how old it is or if it's current but it's what my DD had last May on the Magic):

This one's from the Disney Food Blog - I think this must be from the Dream or Fantasy because I've never seen these plates on the Wonder/Magic:


I hope this helps! Have a great vacation, and don't sweat it too much - I'm sure she'll get plenty to eat!
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Old 06-02-2012, 11:13 AM   #45
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This thread has brought back so many memories for me. My DS, now 15, had severe sensory and feeding disorders. We tried two programs, one at Children's Hospital in DC (no success) and Kennedy Krieger at Hopkins in Baltimore. I can't say enough good things about Kennedy Kreiger. Without that program, I have no doubt that my son would not be eating normally now. At the time (he was almost 3), he would only eat banana baby food, turkey pepperoni, and mashed sweet potatoes. Now, he eats pretty much anything but pasta. He loves any kind of chicken, beef, pork, sushi, ethnic foods, all veggies and fruits, sauces, and flavors. In fact, I'd call him a foodie. I encourage anyone who has a child with this disorder to seek help at a top medical center. It is not something that is simply outgrown, but needs treatment.

As far as DCL goes, they normally have a strawberry banana yogurt, but you'll have to fish out the fruit chunks. In order to get hotter water for mac and cheese, I'd go to Cove Cafe and have the barista make some super hot water to cook it in. You might want to bring a disposable plastic Tupperware type container to use to cook it in. We never ordered chicken nuggets, but tried the chicken strips. They're heavily battered, similar to McDonald's chicken selects. I'd bring as much pre packaged food with you as you possible. If the yogurt thing is an issue, get a small cooler or insulated lunch box with ice pack and bring your own. Most people think there are a lot of food choices on a cruise, however, when you're child has this disorder, there are actually very few. Really, bring your own food, if possible.

Hope this helps. I completely know what you're going through. Good luck!
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