To all parents of austistic children/ children with other developmental disablities!

[Carrieberry]

Hi there! I have started a thread over on the main theme park stratagies board about people staring and making rude comments about the behavior of our autistic or other developmentally delayed children when they are having one of their many meltdowns at WDW. Please feel free to join the thread and post any experiences, good or bad, you have had a WDW with your child or even an adult with one of these "invisible" disablilites. It is my hope to let everyone headed to WDW how important it is to us parents of these special children to not be glared at, pointed at, or accused of bad parenting by others that don't know what we are dealing with. I have received a very positive response from the members here. I would love it if you could go over and describe how your child behaves during a meltdown as I have, and I know all children are different. Thanks!

http://www.disboards.com/showthread.php?t=925495&page=1&pp=15

 

[SueM in MN]

Good idea. I hope people stay nice on that thread because I think it is a community service to post the information.

 

[marj70]

THANK YOU for starting that thread. If I wasn't nice let me know and I will edit my post.

 

[Carrieberry]

You were perfect! Thanks Marj70!

 

[BoysMom2]

Carrieberry
Loved your message. We just returned from our trip (7 days at the Grand Floridian). First time for our boys (ages 6 and 3). 3 year old has food allergy and basically we need to speak to all chefs before he would eat. Because of this he can become very beligerent (especially at dinnertime when he is tired, hungry, etc.) EVERYONE as far as chefs, etc. were wonderful - can't say enough good things about all they did for my child but felt like I was constantly being looked at like I had a brat on my hands and just wanted to yell at everyone - hey, he can't eat what you all can and how would you feel??!! Looking forward to seeing/hearing others experiences!!

PS - Had the BEST time of our lives and can't wait to go back next year!!

 

[Carrieberry]

BoysMom2- So glad you all had a great time! I have found Disney CM's to be the most understanding people in the world. We sat next to a man on the flight home (gave us some great info on local area doctors here in Dallas) who has an autistic 10 year old son. The similarities between his son and our 6 year old were amazing. He was originally from Orlando and his son has grown up at Diisney parks. He said that the worst was Universal. He had to basically threaten the CA park once with a lawsuit to get them to help the way Disney does. They are truly magical, which is why we keep returning with our son. The CM's we encountered went out of their way to help us as soon as we told them what our problem was.

 

[SandrainNC]

Hi, I saw your thread on the other board but it is huge! I will have to read all of the replies when I get a chance.

My son has Down syndrome and I feel like sometimes when he is behaving like a "normal" toddler (having a fit, that sort of thing) people think it is caused by the Down syndrome instead of it being a child having a fit. Does that make sense?? I guess it is kind of opposite from you because it isn't a hidden thing. It is obvious so instead of them thinking he is just being a brat, they think oh, those poor parents who can't control their special child. When it is just him being a kid. My nephew (who will be 18 in December) has Aspergus (sp?) syndrome and my sister says it is very hard when the problem is hidden and people stare because he is doing something like wanting to hold hands with her or hug her (he does these when he gets uneasy in crowds) which probably looks odd because of his height and age.

Anyway, I never comment or think much about kids having fits. But when parents are behaving badly, that is a different thing entirely. Saw a few of those last trip.

Anyway, I'm glad you had a great trip otherwise!

Sandra

 

[Dina]

My son has sensory integration-- an autism spectrum disorder. We've taken him to Disney twice, and luckily have only had two meltdowns (I am very grateful, and surprised about that). The first time was our first night on our first trip (DH and I thought, wow-- guess Disney isn't for us-- luckily things got better). My son had just turned 4years old. We had a very long travel day, as we didn't fly out of Philly until 4pm, so it was almost 8 by the time we finished checking in to Wilderness Lodge. After we dropped off our bags we headed down to Whispering Canyon for dinner. It was just too loud for him, too much stimulation-- and he freaked out. When they took us to our table, he really flipped out and started screaming "not here!!!" We were going to leave, but he calmed down after a few minutes, and we were able to eat. Though the wait staff really took it easy on us, put us in a quieter corner, and really took it easy on us. That really was the only meltdown the entire trip. We took him again right before he turned 5, and we took him to 'Ohana, and I wasn't sure how he'd react (It's not as noisy), but he loved it, and actually won the coconut race-- and came in third for the hula hoop competition hehehe!!! The only meltdown he had on that trip was during Star Wars weekend, it was sooooo crowded, and he really wanted to meet Chewbacca, and the line was so long, and Chewbacca took a break. But, I don't know how much of that wasn't typical 5yo not getting what he wanted. He got over it pretty quickly, and got a bit of a talking to, and no more problems that trip.

We also have the food allergy issue (peanuts) and the chef had to come to our table each meal. I never noticed anyone giving us weird looks though. Next time, I'll have to take a look around, and see if anyone is.

 

[Dina]

Oh, wow, you know its funny how you forget things, I just realized Aidan had alot of meltdowns on the first trip when he was 4years old (I guess its like childbirth-- you only remember the good things)!! Aidan doesn't go on any indoor attractions. It took us a while to figure out what he likes and what he doesn't. And, he had a few meltdowns in attractions, that I didn't think he'd have a problem with (including Playhouse Disney, and philharmagic, Journey to the imagination). It was trial and error, things we thought would be good for him, he freaked out. So, the first trip was tough, the second we knew what he'd like and what he doesn't. Although second trip, he really didn't freak out anymore (guess he's outgrowing that), just says I don't want to do this, and he knows we'll leave. Its alot easier now. Though he did ride Splash Mountain (though he wasn't thrilled with the dark part) He just can't do most indoor attractions-- we learned quickly. He won't even do It's a Small World. So, either DH or I will do something outside with him, while the other takes our younger son (2 years old) on the inside attraction.

 

[leise]

Carrieberry, great thread, really enjoyed reading it; made me laugh and cry in equal measure...remembering some of the situations we've got into... my DS is six and has ASD too. One thing I am finding this year is that as he gets bigger we get more attention when he melts down, and it looks less like maybe an overwrought toddler and more like a badly behaved child.
And though I have grown a very thick skin, sometimes I get caught unawares and something just gets to me.

I'm glad you put it on the community board cos I have read threads there in the past (and on the old DVC community board) where people have been discussing behaviour they saw on recent trips, and how terrible it was that the child did such and such, and I've thought "Oh No! My son might do that!". For example he will undress himself at the slightest excuse, he has absolutely no concept about why this might not be acceptable behaviour, and you just have to stay close and hope you can stop him...I remember a thread on the DVC board discussing how a child , who I think was about 10 had taken off his swimming costume at Stormalong bay, and given a big eyeful and shock to some nearby small girls...well parents and child were pilloried on that thread, and I didn't dare post that maybe he had special needs...next time I will

Dina - , funny about the selective memory thing! Until I read your post I had completely forgotten that my son used to have a problem with indoor rides. He has sensitive hearing, and the noise levels in some of these rides is so high. I remember the first time we took him on It's A Small World he was just terrified.
In the last couple of years though he seems to have lost some of his sensitivity, and can ride quite a few of them, like Snow White, Winnie the Pooh, Peter Pan and IASW. He does on occassion stick his fingers in his ears, and that helps, and it doesn't seem to hinder his great enjoyment. I tried it too, on Snow White, and you can still hear everything that goes on, just not as earsplittingly
We too learned there is no point making him try something he doesn't want to do...but if we can find something in a ride to get his attention, he will give it a go. For example - Snow White is a "train ride", Star Tours has a crane system in the queue area...

 

[michelle9343]

carrieberry again thank you for posting this thread. It actually made me feel good to see how many people had kind things to says. Sometimes being a parent of a special needs child can feel like a very lonely road but when you read about others going through things you know your not alone.

 

[RADOPT]

BoysMom2- So glad you all had a great time! I have found Disney CM's to be the most understanding people in the world. .

The CMs are why we love disney - most are wonderful to my daughter. Now if they could only get the other visiters to be 1/4 as nice, it would be perfect.

 

[Nik's Mom]

I get so tired of the looks. Thank God ds is oblivious to it, but it hurts dh and I. And it's only a matter of time before our 3 year old starts to notice the stares. Just last week, we were at a children's museum, and ds was having a mini-meltdown. A lady kept glaring and I thought "if this lady says one word, I will go off on her!" Fortunately for her, she kept her mouth shut. Does anyone else get tempted to tell people off, or is it just me?

 

[leise]

Nik's Mom, I'm always there ready to tell people off if they say anything, but they never do, just stare or tut! Until I'm totally unprepared....I always plan to say something like " He has Autistic Spectrum Disorder, it's a disability which affects his social skills. Is there a reason why you are so rude?"

I bet I never have the guts to say it

 

[missypie]

Hi, I saw your thread on the other board but it is huge! I will have to read all of the replies when I get a chance.

My son has Down syndrome and I feel like sometimes when he is behaving like a "normal" toddler (having a fit, that sort of thing) people think it is caused by the Down syndrome instead of it being a child having a fit. Does that make sense?? I guess it is kind of opposite from you because it isn't a hidden thing. It is obvious so instead of them thinking he is just being a brat, they think oh, those poor parents who can't control their special child. When it is just him being a kid. My nephew (who will be 18 in December) has Aspergus (sp?) syndrome and my sister says it is very hard when the problem is hidden and people stare because he is doing something like wanting to hold hands with her or hug her (he does these when he gets uneasy in crowds) which probably looks odd because of his height and age.

Anyway, I never comment or think much about kids having fits. But when parents are behaving badly, that is a different thing entirely. Saw a few of those last trip.

Anyway, I'm glad you had a great trip otherwise!

Sandra

DS14 has Asperger's Syndrome...has a problem with "social rules." When we were at Disneyland, staying at the Disneyland Hotel, we usually had to wait a while for the elevator. He was 12 and hadn't yet mastered the "let everyone else get off the elevator before you get on" rule, so he's just walk into the (crowded with people) elevator the second the doors opened. I'm sure people thought he was the rudest boy they'd ever seen...

I guess that teaches me to TRY SO HARD to be tolerant of others. When I see a child whom I think is rudest, or noisiest, or brattiest child ever, I tell myself that I may very well not know the whole story.

 

[SueM in MN]

One of my nephews has Asperger's. The social rules are so hard for him (although the more experiences he has, the more he sees what is expected).
One of the "stories" about him that is really heartbreaking and funny at the same time was related to trouble he had gotten into at school. His mom is a high school teacher and he had come with her to school one day. He saw some of the guys in the hallway, giving some of their friends playful punches in the arms as they walked down the hall.
When he got back to his own school, the next time he went down the hall, he hit another boy (much younger than him and NOT one of his friends) in the arm. He just could not understand why the boy didn't react the same way as the kids he saw at the high school. And, he especially didn't understand why he got called to the principal's office and got into trouble. After all, he was just doing what friends do.

 

[Brightsy]

One of my nephews has Asperger's. The social rules are so hard for him (although the more experiences he has, the more he sees what is expected).
One of the "stories" about him that is really heartbreaking and funny at the same time was related to trouble he had gotten into at school. His mom is a high school teacher and he had come with her to school one day. He saw some of the guys in the hallway, giving some of their friends playful punches in the arms as they walked down the hall.
When he got back to his own school, the next time he went down the hall, he hit another boy (much younger than him and NOT one of his friends) in the arm. He just could not understand why the boy didn't react the same way as the kids he saw at the high school. And, he especially didn't understand why he got called to the principal's office and got into trouble. After all, he was just doing what friends do.

Yeah, it is an amusing and heart breaking story! Thanks for sharing it. I'm gonna add it to my repetoire of "Social Stories to Educate the Ignroant." These are the stories of kids w/ ASD that I use to illustrate to the unknowledgable what life is like for these special kids.

Which 'minds me. T'other day I took my kids after an early release day at school to a local BK for a session in the bouncy hut and a snack. Well, a little girl, really adorable, 'bout 4 or so took a liking to my Vinny. She followed him around and kept trying to talk to him. I decided to let things ride. But then I noticed certain behaviors from Vin. His eyes were moving up and away from her, and when she got close he'd move away. Again, I decided to just observe. Then it got interesting, the little girl managed to corner Vin in the ball pit. HE was literally backed in the corner w/ no escape route. I started to move over there to intervene. HE was chanting "no no no" and had his face turned away from her.
The little girl wasn't really doing anything bad, just trying to be sociable w/ the only other kid there who was close to her in size...then it happened, just before I could get to Vinny. He pinched her and then started screaming and crying. The little girls Mom came over and we got our kids. I'm holding Vinny and rushing to my table to get his brush out of my purse (brush therapy really helps him in situations like these). The little girls Mom folows me, looking upset. I get the brush and I'm brushing Vinny's back while he gloms onto my soda.
The Mom is understandably upset and I ask if her little girl is ok. I know Vinny can sometimes pinch pretty hard. The Mom said the girl was fine. She then berated me for Vin's behavior. *Sigh* I knew it was coming. I told the mom that VInny had given plenty of warning signs and that I was sorry I hadn't gotten to him before the pinch, but that the little girl DID push him to far. The mom then asked why he didn't want to play with her girl and said "Is he retarded?" Oh, this made my day!
I said "No, he's Autistic." She didn't seem to have a clue!
(Boy sorry this is getting so long.)
Anyways, here's what I told her to try to get her to understand what had just happened.
I told her: Imagine you are in a foreign country where you not only don't know the language but are completley in the dark as to the cultural rules. You get approached by a person and he/she gets really really close to you. so close that they're almost touching you chest to chest. The person then starts going on and on and you can't understand a word, and when you back up to get a little more space they follow and get even closer.
I told her that's kinda what it must have been like for Vinny. He tried with his limited skills to let the little girl know how uncomfortable he was. He just can't tell her with words yet, so when he got pushed as far as he could handle he lashed out, regrettably.
The woman looked clueless, and then told me, before she left, that maybe I should just keep Vinny home until he learns "better behavior."
*sigh*
Can't win them all!

Sara

 

[SueM in MN]

Anyways, here's what I told her to try to get her to understand what had just happened.
I told her: Imagine you are in a foreign country where you not only don't know the language but are completley in the dark as to the cultural rules. You get approached by a person and he/she gets really really close to you. so close that they're almost touching you chest to chest. The person then starts going on and on and you can't understand a word, and when you back up to get a little more space they follow and get even closer.
I told her that's kinda what it must have been like for Vinny. He tried with his limited skills to let the little girl know how uncomfortable he was. He just can't tell her with words yet, so when he got pushed as far as he could handle he lashed out, regrettably.
The woman looked clueless, and then told me, before she left, that maybe I should just keep Vinny home until he learns "better behavior."
*sigh*
Can't win them all!

Sara

It's a very good explanation though. I have a feeling they were not in a listening mood

That makes me think of a homework story my mom told about my nephew. The class assignment was to write an essay on "Why I want to be President when I grow up." He turned in a blank page and got in trouble. His teacher (and the Principal) didn't buy his very logical explanation for not writing the essay - he doesn't want to be President when he grows up. He would like to be an Engineer. So, he couldn't write an essay about wanting to be President because that would be a lie. (You can probably figure out pretty easily how far that went).

 

[Brightsy]

It's a very good explanation though. I have a feeling they were not in a listening mood

That makes me think of a homework story my mom told about my nephew. The class assignment was to write an essay on "Why I want to be President when I grow up." He turned in a blank page and got in trouble. His teacher (and the Principal) didn't buy his very logical explanation for not writing the essay - he doesn't want to be President when he grows up. He would like to be an Engineer. So, he couldn't write an essay about wanting to be President because that would be a lie. (You can probably figure out pretty easily how far that went).

Yeah, that went real far...Kid oughta have gotten extra credit for being honest. *shakes head* I wonder at some assignments kids get.

Sara

 

[JustAshe]

I just replied on that thread with a story from one of our many trips down.


BTW, hi all! I'm Ashley, mom to Lanie, Cameron, Nicholas and Luke (whose first trip to Disney was when he was only 2 weeks). Cameron, 8; has autism, high functioning at this point, as he is verbal, but not really high enough to be Asperger's, if that makes sense. Nicholas, is almost 7, and has early onset bipolar.

We've taken the boys to the parks many times, as we're just up in Tallahassee. We usually only spend a few hours a day in the park, and spend time at the hotel just beating around. It's so much easier on the boys than trying to commando the parks. We're fortunate that we live close enough to no feel the "have to do it all" pressure.

We're headed back in December, our first trip back as a whole family since Sept 03. I've taken the boys solo along with a friend a couple of times, and I've been down with my friend (no kids) a couple of times as well since then. I'm really looking forward to a family trip.