Autistic Nightmare!!!

[BringBackTapestries]

Imagine this... Your a parent of a very beautiful 6 year old blond haired, blue eyed boy. Hes the kind of kid who makes you stop what you are doing at least once a week so he can pick flowers for his mom. The kind of kid who cuddles up to you at night and tells ya that he loves you. The kind who would fight the biggest man if he said the wrong word to his little sister (who just had a 2 year birthday all week at WDW). A very sweet, intelligent (genious in our case, with an IQ twice his age) loving child that any parent would be proud to own.
Now imagine this same innocent child at WDW, every 3-4 hours and at times continually for hours on end... screaming to the top of his lungs "I hate you!!!" "I'll kill you!!!" "I wish someone would just hit you!" Crowds of people are stopping frozen to watch this same kid kicking his mother till her leg bled and she had bruises on her leg (he's 95 pounds and VERY strong, and at the time I wasnt there in the ladies restroom to stop him, being I'm a man.) Imagine this kid hitting you with his fist and running away. Not returning no matter what you say or do. Imagine a kid who just dont know how to control his emotional outbursts or his out of control temper, and imagine yourself trying to look civilized, trying desperately to keep him under control when it is all but impossible without wrestling him to the ground and laying on him till it passes. (We are taking classes on how to constrain him physically since nothing else has worked)

Welcome to my world.

I just got back from WDW. First off, we had one of the very best trips EVER! But there was this little issue I thought I'd bring to the attention of every parent of a special needs child... and it created a nightmare!!! I'm writing this to remind anyone out there in the same boat as I (((If there are any))) not to make the same mistake I did.

My son has Asbergers Syndrome. A form of Autism. At least thats what all the doctors say (except for one doctor who looked at him for 10 minutes... says "Yep, its definately ADHD...put him on Ritalin" (she by the way was a full fledged quack, and my son will never be on ritalin {{www.ritalindeath.com}}). Anyways, we, during our stay, forgot one very important yet tiny detail. Our son cant have dyes. You know food dyes like in Koolaid, Mondo drinks, certain ice creams, SPRINKLES at WDW, BLUE SLUSHIES at the Pop Century, etc.) We dont give it much thought around the home because we just dont buy anything much that has them. We have long ago banned icees and popsickles and Koolaid and Fruit punch, and the such because of the very bad affect it has on him. Its kinda common knowledge. We limit his dyes intake as much as possible.
At WDW this week, for some crazy reason, perhaps the rush and/or excitement, we forgot this tiny thing. He had countless trips to the icee machine to get some of that blue icee. Hey, its his vacation too, and since its not a battle we face every day, we often forget this. His little sister got a free ice cream completely out of the blue (her B-day) at the American Dream (?) in Epcot, and the castmember brought my son a cup full of JUST springles. RED YELLOW and BLUE Mickey ears made completely of who knows what. Probably partly wax. He LOVED it!!! They were great. I had some too. I never even gave it a second thought.

All week his outbursts got worse and worse. We are used to people staring. Rarely will anyone ever say anything to me because I'm stocky and bald and look mean as hades (though I'm really not unless they WOULD say anything, then I would be) so that part I'm used to. The stares and gasps... all part of raising a special needs child. My wife has long ago lost her patience for judgemental parents, and she is just like me, but she usually keeps a cool head (unlike me, but I try my best). It never really crossed our minds. We had forgot his Abilify (medicine) for 2 days and we thought it was just that. the next day we gave him his dose, and we figured his outbursts would just slowly stop.
They got worse and worse and eventually, on the last day, we were GLAD to be leaving. On the trip back home we were discussing what we could try next (Weve done it all... countless therapists, psychologists, doctors, autistic support groups, and you name it, weve done it.) We were discussing how we plan to give him a blood test to see if he has some nurtient missing since a friend had a child with very similiar problems and that was his situation. We have put this option off for years because they would have to sedate him, and that scared us. Now we see it as inevitable. Yet another test. When suddenly it hit us! DYES!!! HOW COULD WE HAVE BEEN SO STUPID!?!?! DARN!!!
Just a chilling note to remind any parents out there that if your child has special nutritional needs... VACATION IS NO EXCEPTION!!!
On the brighter side we bought annual passes. The trip was (aside from the unbearable outbursts) very very good. We had lots of fun and spent a lot of very good, happy family fun together. We even got to ride in the monorail front and finally completed our list of riding every single ride and seeing every parade on the 4 grounds. The bus driver made the whole bus sing happy Bday to my 2 year old daughter (whos simply beautiful...Baby magazine front cover cute!) and the trip to Wispering Canyon was a blast! My son always wanders around after he's done eating, and the waiter had fun with that! My Mom got caught sneaking food samples off my wifes plate (she just had to try those delicious ribs) and the waiter had a ball with that too, and the Crystal Palace Character lunch was superb.

In life you accept what you are given, if it's bad, and if it cannot be changed, you dye trying, and NEVER give up, and you determine to make the best of EVERYTHING reguardless. Thats why we do Disney so much.
By the way, if there is anyone out there who has had a child with similiar problems (not ADD or ADHD; I mean REAL problems; ie excessive violence at early years of age, children who cant remember the violence 10 minutes later and who cry without cause, and are happy the next minute, children who cant put on their own clothes and still need help occasionally with potty issues, I'm "all-ears".) But if your going to be judgemental where you know nothing, I have no time for that. I'll just close the thread.

 

[LvsTnk]

I don't have a son with Autism, but my son has Down Syndrome. I am very accustomed to the stares but that doesn't mean I enjoy it by any means. He has his moments, but I love him dearly and am sooo glad he is wiith us.

We love Disney, our son is treated very well there, he is used to it, and it is an easy vacation for us.

It is hard to forget those routine things that our kids need even when you are on vacation...everyone is caught up in how much fun you are having.

Thanks for the reminder!

 

[disneyeveryyear]

Thanks for reminding those of us who don't have to deal with these types of issues on a daily basis, that maybe we aren't seeing what we think we are seeing.

We all need to take a deep breath before we judge others.

Thanks for the reminder!

 

[BringBackTapestries]

I have a few customers with Downs children. I feel for you, and also can relate in many ways. I guess the biggest problem with Autism (and difference) is that my son looks perfectly normal and healthy. People generally expect unusual behaviour from children who "look" different. They just figure mine is a brat, that I dont discipline him, or such, and mumble. I try to go out of my way to be nice and friendly to all the special needs kids I see there. I try to treat them like there's nothing wrong with them, because in the end... who is "REALLY" normal???? I hope see more positive posts to this.
Disney is VERY good with special needs children. Thats why we go so often. We were doing Carowinds for a while and there's not much help there. The disability passes keeps him from having one of his "boredom fits" and keeps the others in line from getting scared senseless when he makes one of his little "unnecessary screams". It used to bother me, but since there's nothing I can do about it, now I just get a small demented pleasure in watching people jump. LOL

 

[nuke]

Originally posted by disneyeveryyear
Thanks for reminding those of us who don't have to deal with these types of issues on a daily basis, that maybe we aren't seeing what we think we are seeing.

We all need to take a deep breath before we judge others.

Thanks for the reminder!

I was thinking the exact same thing. There are many times our first thought is "What a BRAT!" when we really have no idea what else is going on with complete strangers.

OP I'm glad you were able to enjoy your vacation despite a few small problems.

 

[ripleysmom]

Thanks for posting your experiences about food dyes. Some children do react very strongly to them and it is good for people to have the reminder.

I am not sure if you are aware that the link that you posted is pushing drugs. If you aren't perhaps you should take a second look. I'm all for educating parents about the drugs that they give their children. I am, however, against linking them to a site that is designed to alarm parents so that site can push their untested, non FDA approved herbal remedies.

Just a suggestion but have you consulted with a behaviorist? It sounds as though your son has some violent behaviors even without the food dyes. A good behaviorist can work with you to determine what triggers his behaviors. They can also help you to develop ways in which you can redirect his behavior so that tantrums do not result in violent behavior.

Some parents of children on the Autism Spectrum also have found success instituting a gluten free diet. That may help your son as well.

One other thing, while autism can be very difficult to deal with please don't minimize the problems that are faced by parents of children with ADHD and ADD. We have our own sets of problems and they are very real.

 

[MouseEars4us]

Hi BBT...

I'm by no means an expert so, with that in mind...

I have always thought my nephew, now 22years old, has a form of autism. (They diagnosed him ADHD, but with other problems as well. He is adopted and his birth mother was an Alcoholic, so the other problems ) But my MIL, who was a nurse, and I, always had our suspicions it was autism. He is very intelligent, but has trouble screening out noise, he likes to pretend alot... etc...I read what I can on the subject...

Anyway, my son started preschool last week. His teacher is one of my former classmates' mom, also a neighbor, and we attended the same church. ( ie. I know her very well and we gab alot about family) She knows my nephew and asked about him, then told me her daughters oldest boy, 9 , was diagnosed last year with Asbergers Syndrome. They have begun treatment in Cleveland for a kind of socialization skills type class. It has made an amazing difference in him. She said some of the tasks seem so simple to her but they work wonders. For example, one week they had to reinforce "peas in a pod" we are family, we're peas in a pod, we're close and love each other...one week he had to make phone calls, ask 3 questions and wait for the answers, they don't let him off subject when they're talking. They plan together for big events like birthday parties, so he understands people will be comming over, and there will be no presents for him.

She said 2 years ago when his sisters had a birthday party he would hide till everyone was gone. This year he stayed for the entire party and had cake etc...

If you're interested, when we go back this Tuesday, I can get the Dr's name...she may have a referal in your area...

I can only imagine the frustration you must feel... like you said, my nephew with his curly blond hair was an adorable child, it was so maddening to have someone give that exhasperated sigh or make one of those comments a little too loud when he had one of his "meltdowns".

 

[mt2]

My cousin goes through this with his son with dyes too. He and his wife just hold him tightly (arms and legs) and keep repeating quietly in his ear "I'm in control until you can control." Or something very similar. Their Pedi recommended this. His wife told me that they usually end up lying on the floor for up to 30 minutes.

I stopped passing judgement on other parents long ago. I don't live in a glass house.

I'm glad that you had a great time at WDW.

mt2

 

[dizny4us]

BBT,
Thank you for your post. As a parent of a child with Aspergers, I know all too well the stares, comments, etc of onlookers in public!

I am glad you had a great time with the Mouse despite your obstacles!

 

[DisneyMomx7]

My 21 year old son has Asperger's syndrome. He had more outburst when he was younger (didn't know anything about dyes then - they barely could diagnose him). However I hope it will be helpful for you to know that he can control most situations now. He is actually a junior in college (lives at home) and doing well (even works part-time). Of course the social issues really never got better but luckily he has two brothers close in age who try to involve him in activities when they are home from college. It's always with you but you get used to it and handle it. Sometimes it even gets much better than you ever thought it could.

 

[I <3 Eeyore]

I think it's wonderful to educate people about the issues related to food dye sensitivity and Asperger's syndrome, but please don't denigrate the experience of parents and children dealing with ADD and ADHD. They're both challenging to deal with and there are some children that are affected with both (my son being one of them).

I can appreciate your feelings about medication - we're very cautious about it ourselves and have opted for a behavioural based approach to our son's issues. That said, I would never indicate to a parent who chooses meds that their decision is life threatening. I'm not a Dr. nor do I play one on TV.

There's plenty of room for rational discussion regarding treatment options, and we can certainly agree to disagree. That said, I really don't think we should be trying to one up each other as to whose syndrome is bigger, badder, and more challenging than another's.

 

[Hagred]

Originally posted by I <3 Eeyore
I think it's wonderful to educate people about the issues related to food dye sensitivity and Asperger's syndrome, but please don't denigrate the experience of parents and children dealing with ADD and ADHD. They're both challenging to deal with and there are some children that are affected with both (my son being one of them).

I can appreciate your feelings about medication - we're very cautious about it ourselves and have opted for a behavioural based approach to our son's issues. That said, I would never indicate to a parent who chooses meds that their decision is life threatening. I'm not a Dr. nor do I play one on TV.

There's plenty of room for rational discussion regarding treatment options, and we can certainly agree to disagree. That said, I really don't think we should be trying to one up each other as to whose syndrome is bigger, badder, and more challenging than another's.

Then I would ask that you don't do it, either.

My impression from the OP was that he/she was frustrated and a little at his/her wits end and feeling a little angry at themselves for not remembering about food dyes. I say let them vent - it's totally understandable. It's difficult to be politically correct when you're upset and to expect political correctness at such a time seems to be a bit nit-pickey to me.

 

[Goofymum]

Wow at first I thought you were describing my son. My son will be 6 Oct 9th. He does a lot of blabbering and "singing" but he doesn't actually have any vocabulary..we still have hopes for him though. My parents took us to WDW when he was about 2. He hadn't been diagnosed yet, actually we didn't know anything was wrong then. The only problems we had with him then was when we got back to the room he'd crawl back in his stroller and cry because he wanted to go back to the park lol.

Now that he's getting older he's starting to get a little violent. One minute he can be a sweet little angel and the next he's throwing his toys at me because he can't have his way about something. I definitely know what it's like to get stares and comments. In fact I overheard one lady telling another lady something about a brat one day when my son was throwing a fit in a store and tossed an open bag of animal crackers all over the floor. I'm positive her comment was prompted by MY son. I want to take him back to WDW someday but I'm afraid of how it will turn out. I think maybe seeing the magic in my son's eyes when meeting Woody for real may out weigh all the other stuff I know I'll have to put up with.

He's usually fine if he's in a stroller or something so as long as I can find one big enough to haul him around in he'll be fine. Another issue will be dinner. If we are in a fast food restaurant he'll sit there and eat his food like a gentleman, but if we're in a sit down restaurant he acts like an animal. I think that's because it takes longer to get your food though. I guess it's just fast food or buffets for us!

 

[Chilehead Too]

I also claim not to be an expert, but if you are so concerned why would you allow him to drink presweetened koolaid along with the stir fry you make in hotel rooms? As illustrated here:

I think koolaid is just as bad as anything you can buy at WDW.

Of course, this is all just my humble opinion.

Your friend,


Chilehead Too

 

[bsnyder]

My 9 year old neice has Asperger's. In addition, she has some separate health issues related to Turner's Syndrome.

At her worst, Ellie does exhibit some of those negative behaviors you described in your son....screaming hateful things at the object of her fury (usually her mother) and agressive physical behavior (hitting others or herself).

At her best, Ellie is an amazingly bright and endlessly fascinating child. She's at the top of her class in a regular private school, one that is very academically challenging and that affirms her special gifts and talents in that area.

Please don't dismiss out of hand the use of drugs to help with your son's behavior. Ellie takes an anti-anxiety medication daily and it has helped tremendously to lessen the frequency of her outbursts. Of course, that's not really a comfort when she's actually having one, because I do know how terribly and terrifying they can be, especially in a public place.

Also, I would echo RM's suggestion of behavioral therapy. A child with Autism needs lots of practice dealing with the mundane social situations that most children learn to handle without giving it a thought. Practice and repetition in those areas can be a tremendous benefit.

And then, of course, every child is different and unique and most Autistic parents learn coping mechanisms that work best for their individual child. For Ellie, we have had a lot of success in using written communication (notes and short stories) to reinforce certain behavior or discourage hurtful behavior. Ellie has been reading like a sponge since she was 3 years old and the written word seems to get through to her on a level that the spoken word does not.

Good luck to you and your family. I know some of the pain and frustration that you are experiencing, but I'm glad that you also had the opportunity to make some happy family memories on your trip.

 

[roseprincess]

I am sorry about what you had to go thru with your son at WDW.
I also have an autistic son, high -functioning , 7 yr. old. And he has a twin sister, who has a heart condition and has developmental delays. So, my dh and I have twins with disabilities/special needs.
We also were at WDW this past June for our MAW trip.( My dd qualified for the MAW trip). My kids, esp. my dd had a lot of meltdowns at WDW that week. She is a very strong-willed kid. She had a tantrum almost about everywhere we went that week.
She is not autistic, but just had a lot of meltdowns esp. at dinner time. If there wasn't mac and cheese on the menu, she would just tantrum. Both my kids had meltdowns at Typhoon Lagoon, when we were leaving after being there a couple of hrs. My kids were hungry, but my husband made the mistake of buying 1 bag of potato chips for both of them to share instead of two individual bags of chips. Not a good idea. I think they both had their meltdowns for a good half hour, from when we bought the chips at the park to when we were on the bus going back to our resort.
We did get alot of stares from people.
It was a very difficult vacation with all the meltdowns my dd and ds had.
Also, both my dd and ds cried when it rained in the afternoon and/ or evening at the parks. My ds dislikes to be rained on, even if it's only drizzling. We even had the ponchos and all that.
We made the best of our MAW/WDW trip.

As of autism, I know there are many different kinds of autism under the autism spectrum. Fortunately, my ds isn't violent or on any gluten free, casein free diet. he does pretty well. My dh and I
have alot of problems with dd. Her extreme strong-will and her behavior at home. When she has meltdowns, she screams, hits me, etc. We are going to start going to a behavior counselor on these issues with my dd.
So, I can relate on some of your issues you are having with your son.

 

[thelittlemermaid]

Originally posted by LvsTnk
I don't have a son with Autism, but my son has Down Syndrome. I am very accustomed to the stares but that doesn't mean I enjoy it by any means. He has his moments, but I love him dearly and am sooo glad he is wiith us.

We love Disney, our son is treated very well there, he is used to it, and it is an easy vacation for us.

It is hard to forget those routine things that our kids need even when you are on vacation...everyone is caught up in how much fun you are having.

Thanks for the reminder!

My DD also has Down Syndrome. For her first time at WDW, or for this being her first long trip ever, she did very well.

She had her moments in the parks, but not to many people paid attention. Course they could have thought it was the heat getting to her, it was HOT!!! Now she did have a HUGE fit when it was time to get out of the pool {it was being closed because of Hurricane Charley}. People were looking, but it was more of the look like they were saying "Poor thing didn't want to get out". Once she saw that everyone was getting out, Even if people do pay attention I don't let it bother me. DS is a "typical" child {I so hate stereo type names like that!!!} and know that "typical" children can be just as a challange or even more of a challange then a "special" needs child.

We ran into alot of CM's that were very nice to her. If her and I were waiting for DH and DS while they were on a ride and ran into a CM, they would tell us a nice spot to wait for them that was out of sun for DD. When we were waiting in line to ride POTC , a CM told the people in front of us that there was a drop. Apperantly the CM must have seen the look on my face {worried about DD} cause when I walked past him, he touched my arm and said I had nothing to worry about, it wasn't big and that DD would be fine.

Just can't wait for our second trip!!! DD will be 8 and will remember that trip alot more then the first one. Of course I will have the memories of the first trip, Hurricane Charley and all.

 

[mistaroo]

Sorry you had some difficulties on vacation but glad you still had the best trip ever.

I don't know if you've considered this, but has your child been evaluated for bipolar disorder? The rapid mood swings- violent outbursts one minute and happiness the next- made me wonder. Bipolar disorder mimics many other disorders when it occurs in children. Most bipolar children go undiagnosed or misdiagnosed (often times as ADHD or ADD) for years before the true diagnosis is made as the major majority of bipolar children meet criteria for other disorders, too. I just thought I mention it, either for your benefit or for the benefit of someone else who is reading this and has a child in need.

Good luck to you and your son.

 

[I <3 Eeyore]

Originally posted by Hagred
Then I would ask that you don't do it, either.

My impression from the OP was that he/she was frustrated and a little at his/her wits end and feeling a little angry at themselves for not remembering about food dyes. I say let them vent - it's totally understandable. It's difficult to be politically correct when you're upset and to expect political correctness at such a time seems to be a bit nit-pickey to me.

You're entitled to your opinion, I'm entitled to mine. Feel free to find it nit-picky. I commended the poster for bringing the issue to people's attention. I also expressed an opinion about belittling other conditions and insinuating that they aren't 'real'. If that's being nit-picky, so be it.

 

[ladydancer]

Originally posted by roseprincess
I am sorry about what you had to go thru with your son at WDW.
I also have an autistic son, high -functioning , 7 yr. old. And he has a twin sister, who has a heart condition and has developmental delays. So, my dh and I have twins with disabilities/special needs.
We also were at WDW this past June for our MAW trip.( My dd qualified for the MAW trip). My kids, esp. my dd had a lot of meltdowns at WDW that week. She is a very strong-willed kid. She had a tantrum almost about everywhere we went that week.
She is not autistic, but just had a lot of meltdowns esp. at dinner time. If there wasn't mac and cheese on the menu, she would just tantrum. Both my kids had meltdowns at Typhoon Lagoon, when we were leaving after being there a couple of hrs. My kids were hungry, but my husband made the mistake of buying 1 bag of potato chips for both of them to share instead of two individual bags of chips. Not a good idea. I think they both had their meltdowns for a good half hour, from when we bought the chips at the park to when we were on the bus going back to our resort.
We did get alot of stares from people.
It was a very difficult vacation with all the meltdowns my dd and ds had.
Also, both my dd and ds cried when it rained in the afternoon and/ or evening at the parks. My ds dislikes to be rained on, even if it's only drizzling. We even had the ponchos and all that.
We made the best of our MAW/WDW trip.

As of autism, I know there are many different kinds of autism under the autism spectrum. Fortunately, my ds isn't violent or on any gluten free, casein free diet. he does pretty well. My dh and I
have alot of problems with dd. Her extreme strong-will and her behavior at home. When she has meltdowns, she screams, hits me, etc. We are going to start going to a behavior counselor on these issues with my dd.
So, I can relate on some of your issues you are having with your son.

I can totally relate to the "Mac & Cheese" meltdown. My grandson who lives with me is a wonderful 5 year old autisic little boy. We have constant battles over Mac & Cheese. He wants it every meal. He can say a hand full of words and you guessed it "Mac & Cheese" is one of them. I know all too well about the stares. I know people are thinking "what a brat" when he has his meltdowns.

I think by posting this on board maybe it will make people more aware that there are children who are "outside the box".