Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi cynthia, One doubt what's wrong with cotton candy it 's just sugar right. i used to get for my son thinking it cant be that bad . i buy white colour cotton candy Thanks, Anitha ; From: knardini@... Date: Wed, 16 Feb 2011 08:42:52 -0800 Subject: Re: Disney World Do you use the special assistance pass to avoid long waits in lines? Kristy -- Thumb typed! <thecolemans4@...> wrote: I recommend just staying away from the things that would trigger a total meltdown. Like Bill said, they're pretty diet-friendly, and you can even go to their website to find menus in advance if you want. I packed plenty of snacks. But I was able to not fret about it, and I was bad - I even let them have a whole big bite of cotton candy (then my husband and I ate the rest behind their backs). But if you know something specific is going to cause a big meltdown, avoid it then. Big one: Drink water! Lots of it. My experience: within a few hours at Disney, my youngest " PDD " son w/ CFS started melting down, and within 2 days he was having breakdowns and screaming fits - it was awful, and very very unlike him. It dawned on me then (because it didn't freakin occur to me that he was exhausted - silly boy didn't say so) that all the walking had triggered his CFS, even though he was able to walk. I rented a wheelchar for the rest of the week, and about a day and a half into the wheelchair, he finally looked up and around him and was like " Hey ... we're at Disney World " . Of course, then, I was exhausted lol, and big brother was ticked off about his brother riding around in a wheelchair, 'cause you know, his legs get tired too, until I rented an extra large one and let them both ride when big brother wanted to - which thank God wasn't all the time). I really wonder how many meltdowns w/kids on the spectrum would be prevented on outings that take a lot of walking - if your kid does well with that, great - if you're really sure and you're not missing it as a melt-down trigger because it never occured to ya. Some of us have kids who are bouncing around so much that you'd never suspect certain types of physical activity (walking) would be a trigger for a meltdown because it's doing something to the brain - not just because they're the typical 'toddler' tired. I will never make my son walk so much again until I know he can do it, because we did a small water park late last summer and he melted down then too - & he's a kid who doesn't melt down. Anyway, given the " A " word autism, the assumption would of course be 1) diet infractions, & 2) overstimulation. You look at my kid bouncing around and squirming in his chair, draping himself all over the place and wiggling and tell someone he has CFS & that he's exhausted, they're gonna look at you like you grew an extra (and very ugly) nose. What if they're just shut down because they over-exerted, and if they could ride in a stroller or wheelchair (not too horribly expensive to rent & worth every penny), would they stay connected longer? Don't forget to get a letter from your doctor stating his disability. You can get a card to ride in a different line. (If you have the wheelchair - the line gets even shorter - not why I got it though.) I'd really take a stroller or rent something, even for a 4 year old. That's my biggest tip. ________________________________ From: Margaret <margaret.neville@...> Sent: Tue, February 15, 2011 1:24:00 PM Subject: Disney World Hi, We are headed to Disney with our 4 children tomorrow! I'm now freaking!! Our son, almost 4 yrs. old, non-verbal, has been on the SCD diet without dairy so GF/CF/SF and I was wondering if anyone has any tips?!?! We limit his fruit intake too- We are headed out to meet with Dr. G in the beginning of March. If any of you are patients of Dr. G, Dr. R, etc. Can you help me with their diet and suggestions down there? Your input is greatly appreciated. I have a feeling we will be following that diet soon so I would rather the infractions from the SDC at least follow the diet. Thank you so much!! Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 They had white. I don't know why they have to add colors to everything! Yes, you watch that stuff melt down to it's sugar & there's rich coloring in there. It's evil lol. That's why I had to eat it all for them. ________________________________ From: Shyam Nair <shyam_k_nair@...> nids Sent: Wed, February 16, 2011 11:07:42 AM Subject: RE: Disney World  Hi cynthia, One doubt what's wrong with cotton candy it 's just sugar right. i used to get for my son thinking it cant be that bad . i buy white colour cotton candy Thanks, Anitha ; From: knardini@... Date: Wed, 16 Feb 2011 08:42:52 -0800 Subject: Re: Disney World Do you use the special assistance pass to avoid long waits in lines? Kristy -- Thumb typed! <thecolemans4@...> wrote: I recommend just staying away from the things that would trigger a total meltdown. Like Bill said, they're pretty diet-friendly, and you can even go to their website to find menus in advance if you want. I packed plenty of snacks. But I was able to not fret about it, and I was bad - I even let them have a whole big bite of cotton candy (then my husband and I ate the rest behind their backs). But if you know something specific is going to cause a big meltdown, avoid it then. Big one: Drink water! Lots of it. My experience: within a few hours at Disney, my youngest " PDD " son w/ CFS started melting down, and within 2 days he was having breakdowns and screaming fits - it was awful, and very very unlike him. It dawned on me then (because it didn't freakin occur to me that he was exhausted - silly boy didn't say so) that all the walking had triggered his CFS, even though he was able to walk. I rented a wheelchar for the rest of the week, and about a day and a half into the wheelchair, he finally looked up and around him and was like " Hey ... we're at Disney World " . Of course, then, I was exhausted lol, and big brother was ticked off about his brother riding around in a wheelchair, 'cause you know, his legs get tired too, until I rented an extra large one and let them both ride when big brother wanted to - which thank God wasn't all the time). I really wonder how many meltdowns w/kids on the spectrum would be prevented on outings that take a lot of walking - if your kid does well with that, great - if you're really sure and you're not missing it as a melt-down trigger because it never occured to ya. Some of us have kids who are bouncing around so much that you'd never suspect certain types of physical activity (walking) would be a trigger for a meltdown because it's doing something to the brain - not just because they're the typical 'toddler' tired. I will never make my son walk so much again until I know he can do it, because we did a small water park late last summer and he melted down then too - & he's a kid who doesn't melt down. Anyway, given the " A " word autism, the assumption would of course be 1) diet infractions, & 2) overstimulation. You look at my kid bouncing around and squirming in his chair, draping himself all over the place and wiggling and tell someone he has CFS & that he's exhausted, they're gonna look at you like you grew an extra (and very ugly) nose. What if they're just shut down because they over-exerted, and if they could ride in a stroller or wheelchair (not too horribly expensive to rent & worth every penny), would they stay connected longer? Don't forget to get a letter from your doctor stating his disability. You can get a card to ride in a different line. (If you have the wheelchair - the line gets even shorter - not why I got it though.) I'd really take a stroller or rent something, even for a 4 year old. That's my biggest tip. ________________________________ From: Margaret <margaret.neville@...> Sent: Tue, February 15, 2011 1:24:00 PM Subject: Disney World Hi, We are headed to Disney with our 4 children tomorrow! I'm now freaking!! Our son, almost 4 yrs. old, non-verbal, has been on the SCD diet without dairy so GF/CF/SF and I was wondering if anyone has any tips?!?! We limit his fruit intake too- We are headed out to meet with Dr. G in the beginning of March. If any of you are patients of Dr. G, Dr. R, etc. Can you help me with their diet and suggestions down there? Your input is greatly appreciated. I have a feeling we will be following that diet soon so I would rather the infractions from the SDC at least follow the diet. Thank you so much!! Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Yes for many of them. A lot, though, will send you on straight thru the regular lines, and the special assistance lines were occasionally longer walks. Once we had to switch to the wheelchair, though, people waved us on thru to other ways.  It was pretty nice to have. ________________________________ From: Kristy Nardini <knardini@...> ; Sent: Wed, February 16, 2011 10:42:52 AM Subject: Re: Disney World  Do you use the special assistance pass to avoid long waits in lines? Kristy -- Thumb typed! <thecolemans4@...> wrote: I recommend just staying away from the things that would trigger a total meltdown. Like Bill said, they're pretty diet-friendly, and you can even go to their website to find menus in advance if you want. I packed plenty of snacks. But I was able to not fret about it, and I was bad - I even let them have a whole big bite of cotton candy (then my husband and I ate the rest behind their backs). But if you know something specific is going to cause a big meltdown, avoid it then. Big one: Drink water! Lots of it. My experience: within a few hours at Disney, my youngest " PDD " son w/ CFS started melting down, and within 2 days he was having breakdowns and screaming fits - it was awful, and very very unlike him. It dawned on me then (because it didn't freakin occur to me that he was exhausted - silly boy didn't say so) that all the walking had triggered his CFS, even though he was able to walk. I rented a wheelchar for the rest of the week, and about a day and a half into the wheelchair, he finally looked up and around him and was like " Hey ... we're at Disney World " . Of course, then, I was exhausted lol, and big brother was ticked off about his brother riding around in a wheelchair, 'cause you know, his legs get tired too, until I rented an extra large one and let them both ride when big brother wanted to - which thank God wasn't all the time). I really wonder how many meltdowns w/kids on the spectrum would be prevented on outings that take a lot of walking - if your kid does well with that, great - if you're really sure and you're not missing it as a melt-down trigger because it never occured to ya. Some of us have kids who are bouncing around so much that you'd never suspect certain types of physical activity (walking) would be a trigger for a meltdown because it's doing something to the brain - not just because they're the typical 'toddler' tired. I will never make my son walk so much again until I know he can do it, because we did a small water park late last summer and he melted down then too - & he's a kid who doesn't melt down. Anyway, given the " A " word autism, the assumption would of course be 1) diet infractions, & 2) overstimulation. You look at my kid bouncing around and squirming in his chair, draping himself all over the place and wiggling and tell someone he has CFS & that he's exhausted, they're gonna look at you like you grew an extra (and very ugly) nose. What if they're just shut down because they over-exerted, and if they could ride in a stroller or wheelchair (not too horribly expensive to rent & worth every penny), would they stay connected longer? Don't forget to get a letter from your doctor stating his disability. You can get a card to ride in a different line. (If you have the wheelchair - the line gets even shorter - not why I got it though.) I'd really take a stroller or rent something, even for a 4 year old. That's my biggest tip. ________________________________ From: Margaret <margaret.neville@...> Sent: Tue, February 15, 2011 1:24:00 PM Subject: Disney World Hi, We are headed to Disney with our 4 children tomorrow! I'm now freaking!! Our son, almost 4 yrs. old, non-verbal, has been on the SCD diet without dairy so GF/CF/SF and I was wondering if anyone has any tips?!?! We limit his fruit intake too- We are headed out to meet with Dr. G in the beginning of March. If any of you are patients of Dr. G, Dr. R, etc. Can you help me with their diet and suggestions down there? Your input is greatly appreciated. I have a feeling we will be following that diet soon so I would rather the infractions from the SDC at least follow the diet. Thank you so much!! Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 We've never been to D-World. We've only visited D-land when visiting Dr G. Give a call to Catering and see if Chef is still head of Disney Dining. Talk to the chefs at each of the restaurants. At D-land, one of the eateries had GF pizza, another sit down restaurant had GF noodles. They never did make any sweets he could have unlike Great Wolf resort in PA. They catered to my son's dietary restrictions and were very helpful doris land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 We look for the rice crispy treats and have just a little. -- Thumb typed! Doris and Steve <sjsmith@...> wrote: We've never been to D-World. We've only visited D-land when visiting Dr G. Give a call to Catering and see if Chef is still head of Disney Dining. Talk to the chefs at each of the restaurants. At D-land, one of the eateries had GF pizza, another sit down restaurant had GF noodles. They never did make any sweets he could have unlike Great Wolf resort in PA. They catered to my son's dietary restrictions and were very helpful doris land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 The Disney restaurants are wonderful about preparing foods to fit your child's diet, especially at the sit-down restaurants. If you tell them someone at the table has allergies, they'll send a chef out to talk to you about what they can prepare within the diet's requirements. You can also pack food to bring with you for a picnic. Gaylen In a message dated 2/15/2011 9:30:12 P.M. Central Standard Time, margaret.neville@... writes: Hi, We are headed to Disney with our 4 children tomorrow! I'm now freaking!! Our son, almost 4 yrs. old, non-verbal, has been on the SCD diet without dairy so GF/CF/SF and I was wondering if anyone has any tips?!?! We limit his fruit intake too- We are headed out to meet with Dr. G in the beginning of March. If any of you are patients of Dr. G, Dr. R, etc. Can you help me with their diet and suggestions down there? Your input is greatly appreciated. I have a feeling we will be following that diet soon so I would rather the infractions from the SDC at least follow the diet. Thank you so much!! Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Yes, get the pass. Not always needed but extremely helpful. Gaylen In a message dated 2/16/2011 10:43:18 A.M. Central Standard Time, knardini@... writes: Do you use the special assistance pass to avoid long waits in lines? Kristy -- Thumb typed! <_thecolemans4@..._ (mailto:thecolemans4@...) > wrote: I recommend just staying away from the things that would trigger a total meltdown. Like Bill said, they're pretty diet-friendly, and you can even go to their website to find menus in advance if you want. I packed plenty of snacks. But I was able to not fret about it, and I was bad - I even let them have a whole big bite of cotton candy (then my husband and I ate the rest behind their backs). But if you know something specific is going to cause a big meltdown, avoid it then. Big one: Drink water! Lots of it. My experience: within a few hours at Disney, my youngest " PDD " son w/ CFS started melting down, and within 2 days he was having breakdowns and screaming fits - it was awful, and very very unlike him. It dawned on me then (because it didn't freakin occur to me that he was exhausted - silly boy didn't say so) that all the walking had triggered his CFS, even though he was able to walk. I rented a wheelchar for the rest of the week, and about a day and a half into the wheelchair, he finally looked up and around him and was like " Hey ... we're at Disney World " . Of course, then, I was exhausted lol, and big brother was ticked off about his brother riding around in a wheelchair, 'cause you know, his legs get tired too, until I rented an extra large one and let them both ride when big brother wanted to - which thank God wasn't all the time). I really wonder how many meltdowns w/kids on the spectrum would be prevented on outings that take a lot of walking - if your kid does well with that, great - if you're really sure and you're not missing it as a melt-down trigger because it never occured to ya. Some of us have kids who are bouncing around so much that you'd never suspect certain types of physical activity (walking) would be a trigger for a meltdown because it's doing something to the brain - not just because they're the typical 'toddler' tired. I will never make my son walk so much again until I know he can do it, because we did a small water park late last summer and he melted down then too - & he's a kid who doesn't melt down. Anyway, given the " A " word autism, the assumption would of course be 1) diet infractions, & 2) overstimulation. You look at my kid bouncing around and squirming in his chair, draping himself all over the place and wiggling and tell someone he has CFS & that he's exhausted, they're gonna look at you like you grew an extra (and very ugly) nose. What if they're just shut down because they over-exerted, and if they could ride in a stroller or wheelchair (not too horribly expensive to rent & worth every penny), would they stay connected longer? Don't forget to get a letter from your doctor stating his disability. You can get a card to ride in a different line. (If you have the wheelchair - the line gets even shorter - not why I got it though.) I'd really take a stroller or rent something, even for a 4 year old. That's my biggest tip. ________________________________ From: Margaret <_margaret.neville@..._ (mailto:margaret.neville@...) > _ _ (mailto: ) Sent: Tue, February 15, 2011 1:24:00 PM Subject: Disney World Hi, We are headed to Disney with our 4 children tomorrow! I'm now freaking!! Our son, almost 4 yrs. old, non-verbal, has been on the SCD diet without dairy so GF/CF/SF and I was wondering if anyone has any tips?!?! We limit his fruit intake too- We are headed out to meet with Dr. G in the beginning of March. If any of you are patients of Dr. G, Dr. R, etc. Can you help me with their diet and suggestions down there? Your input is greatly appreciated. I have a feeling we will be following that diet soon so I would rather the infractions from the SDC at least follow the diet. Thank you so much!! Margaret [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
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