Wednesday, April 21, 2010

Notes from DisneyWorld

Just got back from a weeklong trip to Disney World. We have been there several times, although Alex's meltdowns last time (before we really knew anything was "wrong" with him) had me doubting we would ever return.

They do a fantastic job with special needs, by the way. Alex is off milk; we did a trial of the GF/CF diet last year and noticed a difference with casein. At each meal the Chef came out and discussed what he could eat and even made some meals in a different way so he could eat them. They have Toffuti at every restraurant. I know they also have special passes for special needs kids to avoid long lines. Alex is not that severely affected and does not have trouble waiting in lines so we didn't pursue this. However, I have heard they do a really great job in that area.

My only complaint about Disney is some of the other "guests" (Disney's word for customers/visitors). My two youngest (Alex and Sarah) had a few difficult moments (AKA meltdowns). Alex for obvious reasons and Sarah for less obvious reasons although she definitely has some behavior issues that I think are related to her adoption or in this case the hunger she must have experienced in the orphanage. She is very concerned about where her next meal is coming from and gets positively frantic if she feels food is unavailable. Hence, she had a gigantic meltdown on the bus one day when she was hungry and I had no food. I mean, enormous. Screaming she hated me, hitting me, etc. Of course there were numerous gawkers on the bus who just couldn't refrain from staring and whispering behind their hands (like I don't know what they are saying). Looks of utter disgust and out and out staring apparently are completely appropriate. Alex got the same stares/whispers/disapproving glares when he had a meltdown after a long day in the park. (Alex did very well overall - he behaved pretty much typically for most of the trip, I am happy to say, except for a few incidents).

Here's my plea - don't stare or whisper when you see a child having a meltdown. And teach your kids not to stare, point, etc. Meltdowns look like tantrums but are different. You may not be able to tell the difference, but give the kid the benefit of the doubt if you see a child "tantruming". Tantrums are a way for a kid to get his way, a battle of wills. Meltdowns are the result of too much stimulation, or if the child is put into a position he/she is not equipped to deal with. Autism spectrum disorders, sensory processing disorder, ADHD, and adoption-related issues are not visible, but are just as real as cerebral palsy, Down's Syndrome or a broken leg. And it hurts just as much to have people gawking at your kid for something they really can't help. For the record, I am not perfect with this either. I sometimes get super-angry at my kids even when I know they are incapable of controlling themselves and I definitely get embarrassed. And sometimes I look at a kid I don't know and think "what a brat" But then I try to give them the benefit of the doubt. Because you just never know what the whole story may be. I would love to tell these parents with their "perfect" kids that I, too, could pat myself on the back and congratulate myself on how well-behaved my kids are if my kids were all typically-developing kids. My older two kids sometimes get embarrassed by the meltdowns and I don't blame them. But I hope they are also learning not to stare, point, whisper, or judge.


  1. "Meltdowns look like tantrums but are different"
    this is sooo true
    Glad that you had an overall great disney experience - they really do a fabulous job !

  2. This is a great reminder Kris. Thank you.

    Question. On the bus, while you were dealing with the meltdown, would it have bothered you if a normal (relatively speaking) looking woman who genuinely likes kids sitting near you made eye contact with your little one combined with a wave, funny face or a smile?

    I'm guilty of having done this once or twice, depending on the circumstance of course. If it's not helping mom or kid I'm quick to see and back off sympathetically. I've experienced both, provided a distraction and not been of any help at all.

    Also, I "hate" the I hate you thing with kids. Although guilty of it when I was a kid, with mine I established the first time he said it to me that it wasn't ok. That he could say he was mad at me, upset with me, whatever he wanted but that he wasn't allowed to say he hated me because I knew it wasn't true and it hurt my heart. For me, it worked, and he never said it again. He has said plenty of times that he wasn't happy with me ...

  3. Campbell, I really don't mind if someone tries to distract during a meltdown and I have had people try - but it usually doesn't work. Often (esp for Alex) one more person trying to interact just intensifies the problem. Usually he needs a quiet, dark place to "chill". But I never fault someone for trying!!

    I know - the "I hate you" thing is completely unacceptable. She does say it when she is out of control. We have talked about it but she still does it on occasion. She is not an "easy-going" child - she has issues with food, the dark, and being left alone that my other kids don't. I strongly suspect they are due to being in an orphanage. I have been told she may never "outgrow" them. I try to be patient, sometimes it is hard! On the other hand, she is also very social, engaging and fun to be around. When she smiles, it brightens the whole room and other kids gravitate to her.

  4. Awww...she sounds lovely!

    It's hard sometimes to be patient with "regular" kids so I can only imagine what it would be like with kids who have extra things to deal with.

    I really admire your dedication Kris, and I hope you have people to give you a hand so you get a break once in a while.

    Wish I could offer to babysit for ya!

  5. I don't know Kris, but I reckon you could give yourself a pat on the back and congratulate yourself on how well behaved your kids were. A trip to DisneyWorld is not something we would tackle lightly and from how you've described it your children were as good as they could be - maybe even better than you expected. You should celebrate that (and not make too many comparisons with other kids who could have done this easily without having to try too hard) because that really is quite an achievement ... based loosely on something I read many years ago now in the Good Child Guide.

  6. I like how you make a distinction between tantrum and meltdown. Just wish others could understand it when we're in the middle of a sensory meltdown in public. But with the encouragement from other parents, like yourself, I'm learning to be a better advocate and trying to speak up & educate strangers. How else will they learn?

    Bravo to you and your kids for surviving (and enjoying) Disney World, by no means a small feat. I keep telling myself MAYBE one day.......