Autistic Nightmare!!!

[tar heel]

Sorry to hear about the problems, but I'm glad you consider it a good trip overall. It's tough having children with Asberger's b/c they seem so "normal" for the most part. I see you're in North Carolina. Are you working with TEAACH? There are people with autistic children who move to NC just so they can have TEAACH's services and they are absolutely free for life.

 

[Tiiiigergirl]

As another parent of a child on the Autism spectrum I feel for your public tantrums. We have loved taking our son on DCL but no longer feel that we can. With his last tantrum he was on the street in Grand Cayman. He grabbed my cane and then threw it down after a few feet. He then went running into the street. My husband was trying to physically restrain him to keep him from getting killed but it looked like he was chasing him to beat him. OUr son is 11 and not such a little kid anymore. Just being hot, hungry and out of his routine caused this melt down. We felt lucky that no one acted on the comments of abuse being hurled our way. The majority only saw my husband "tackle" him and did not see what led up to it. We weren't abusing but protecting him from traffic. It was our son's last trip outside of the country.

 

[CarolA]

The sad part is there are true brats out there and they probably condition the rest of us to think that about your children.

I have a friend who has the "BRAT FROM YOU KNOW WHERE" There is no medical condition unless you count being spoilt as a medical condition. So kids like her make all of us probably a little less understanding then we should be. (I understand this child has a screaming hissy inside each Disney toy shop until her parents buy her something! She screams in lines at Disney "I DON"T LIKE TO WAIT!" And after telling us all this the parents have no idea why none of us want to vacation with them and the brat. The real reason I know it is not medical is that her teachers have gotten her to behave at school so she can behave she just has no incentive to behave.)

And by the way, if I find you cooking your stir fry next to me.... your child won't be the only person pitching the fit!

 

[BringBackTapestries]

To the poster who was worried about taking your son to WDW, I'd say just do it! Life is short. When your much older you'll always wish you had taken him. Its actually better than being in the local Walmart as long as you can just remember "NOONE KNOWS ME HERE!!!" LOL
To Chilehead Too. We did the stir-fry thing again!!! They closed that thread down cause it created so much BAD response. They are no more dangerous than a hair dryer or curling iron and are UL approaved so they go through rigorous testing under the most unsafe conditions to pass. Course, I do respect the Disney rules point. I just dont always follow rules. We are going to try the vege steamer next time instead of the skillet. All plastic, perfectly safe. Love my steamed veges. I thought of that thread on our last trip. I spotted a guy hauling in a portable fridge, and another guy carrying in a Microwave oven!!! Course after visiting the moderate resorts, if my business continues to grow as it has in the past few months, I may just do one of them next time and use the onsite grills or kitchenettes (if there are any). You got me on the presweetened Kool-Aid. Guilty. We actually seen something that will take the place of that in the next trip. A friendly couple at the park showed us their water bottle. You run that nasty Magic Kingdom water into a small drinking water bottle, and it filters it and removes the bad taste! I knew such a thing existed for camping, but never considered one for a vacation use. They are no bigger than a Gatorade bottle, and dont have hardly any weight at all when empty. Were going to get one of those for our December trip and ditch the presweetened Kool-Aid since it did prove to be part of the problem. Live and Learn. It also will eliminate waiting in the lines for free water from the concession stands since the water fountains never have lines and are already cold.
As far as the medicine issues goes, I only posted the ritalin death website to alert parents that drugs are NOT always safe. Yes my son is on Abilify, and its a "off label use", but it DOES work for him. Risperdol and Tenex also worked (they almost cured him COMPLETELY, but were destroying his kidneys. He was wetting on himself (and worse) excessively. I cant handle that. I'll take the Autistic behaviour anyday over that.) I'm not an advocate of Herbals either. I'd prefer to use them over prescribed, but have never seen anyone who actually could say that they DEFINATELY work. (I'm listening if you have an Herbal cure for explosive anger that you have found DEFINATELY works) I hate ALL medicine. I wish he werent on ANY! I wish he were NORMAL!!! But thats not an option at this point, so I do what seems to work best all things considered. As for the ADD/ADHD remark, what I meant is that I do know some kids personally who have been diagnosed as ADD & ADHD who were just a bit hyper. Hyper is NORMAL. Hyper is HEALTHY!!! It keeps weight down. Many of the parents of those kids are only concerned with the school work issue. Maybe its the boring classrooms and boring teachers. Maybe your child isnt getting challenged enough. Intellectual children are often misdiagnosed as ADD ADHD when they are just smart hyper kids. Silicone Valley is full of them. I read somewhere on the internet that Bill Gates is Aspergers. I dont blame the parents, I blame the push of horrible drugs to perfectly normal kids by doctors. Ive met a few of them myself. The thought here is its easirer to just say "ADD, stick em on Ritalin or Strattera" than to take the necessary time needed to actually EVALUATE the actual problem and treat IT; the problem; not the results of the problem. I'm not degrading ADD kids, because some of them are Bipolar and autistic with an ADD label, and others, so, I sympathise with you. Its just that we have created a society of lazy parents who never let the kids play outside, (its just not safe in some areas) never let them get any real exercise (Playstation dont count) and a society of drug crazed doctors who get financial kickbacks for the pushing of such. Never underestimate the power of money by pharmasudical (misspelled I'm sure) mega corps. Its not the kids with problems I have an issue with. Its the parents who expect the kids to behave like adults. Kids have to play, they have to develop their muscles, they NEED exercise. Some parents try to push their kids into THEIR busy schedule, never spend DAILY QUALITY TIME with their kids, never play with them, never give them exercise, and when the kids body is saying "HELP! I NEED EXERCISE!" The parent says "He Hyper. Drug him!!!" That is what I have a problem with; not children with a real physical or mental problem. Dont take it personally.
I'm glad for all the positive response, and YES, I just needed to vent.

 

[BringBackTapestries]

CarolA Youd never know if I were cooking stirfry next to you unless you have the ability to smell through a 4" thick wall. Dont be so silly. And if you did, your fit wouldnt affect me. it would let you see MY autistic fit.

To the other poster, Yes, we are working through TEACCH. Need all the help we can get.

 

[BringBackTapestries]

This thread isnt about the stir-fry, so lets just drop that one...TRUCE?

 

[chrissie123]

Originally posted by 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.

 

[DawnCt1]

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.

I would just like to say that you have made an excellent point. ADHD is challenging, not only for parents but for kids as well. There are many treatment modalities, including medication. As you noted, this works very well for some children and not for others. I have tremendous empathy for the OP but to classify ADHD as not a "real" problem is inappropriate.

 

[chrissie123]

sorry don`t know what i did there You were not at all STUPID for forgetting you are only human after all, as for the stares... ignore them if people are rude enough to stare then they are not worth worrying about....I think you sound like very good, patient parents.. carry on doing this & DO NOT give a monkeys what other people want to think....

 

[Microcell]

I worked with children and adults with Autism, some with an ADHD label and some not. I have worked with ADHD children as well and there is a world of difference between ADHD and Autism. The people with Autism and Mental Retardation, those who are prone to violent outbursts and void of affection are all but lost to their parents, with only a sliver of hope when those rare times your child hugs you or laughs. I can tell you from experience you have to jump through hoops and time it just right with their moods to get even a smile out of quite a few of these people with Autism.

That said, PM me I would love to get more info as to what your specific problems are and maybe I can give you some hints as to how to deal with them.

You should get together with an agency near you to train on how to physically manage your son when he can't manage himself. They used a modified form of Mandt (police program) when I worked in this field 6 years ago. It was the least intrusvie, and we thought it helped maintain their dignity while helping them keep from hurting themselves or others. It is possible for your wife to do, I weighed 110 lbs and was able to restrain 225 lb very angry man often 4 or 5 times a week. The key while holding them is to tell them you will release just as soon as they can be calm for a certain amount of time.

The biggest hint I can give anyone is to remain calm and the calmer you are in reaction the faster your chilld will calm down. That is not to say that the behaviors will ever stop, but calm firm resolve is the most helpful.

Potty training the oldest I have trained sucessfully was 9. We had to resort to a beeper because the boy found it aversive and it was a last resort. Otherwise it is like training a three year old with tons of praise and a reward for producing results that eventually you have to fade. You also need to sit a good portion of the day there to get the idea going for like four days in a row. After that going every two hours without fail to ensure sucess, with modification for less time if he goes more often than two hours. It takes so much longer to train a kid with Autism than a non affected child.

I loved working in that field but I no longer do it becasue I need to be there for my kids, and I took too much home with me. I cannot imagine how parents are able to live with such extreme behaviors day in and day out. I admire all of you for being able to live with it. Working in a semi institutional setting taught me that I probably could not go home to it as many of you have to do. You should be proud of your strength.

 

[gr8tpanther]

This is probably the best thread I have ever read. My DD11 has ADHD and Bi-polar. I dread taking her to WDW because she doesn't travel well AT ALL.

I know ALL about the people who think I am a bad mother in public. Even my own family thought that for a LONG time until one of them decided to take her for awhile, thinking it was ME, well, they found out the hard way, it wasn't ME,, and now, nobody in the family says anything.

Being a parent of a special needs child is hard, and being a SINGLE parent of a special needs child is harder, because you are not only dealing with the child, you are doing it alone.

Thanks for posting this thread, makes me feel better knowing that I am not the only one, even though I KNOW I am not, just nice to know.

 

[endkaos]

Been there, done that.

What you describe as avoiding dyes falls under the the Feingold program. www.feingold.org. It is dietary support program that helps parents eliminate artificial colors, flavors and preservatives for ASD kids.

Disney is familiar with these guidelines and is very supportive in offering alternatives for those people sensitive to artificial colors and flavors.

Many of our members have visited WDW, DL and DCL. Many times, we have already found alternatives to the colored offensives. It's been awhile, but there used to be a certain Mickey mouse Ice cream bar you could get on main street that didn't use artifical colors or flavors. I remember it was NOT the Nestle one.

Also, I believe in the old fashioned soda fountain, you could get a natural lemonade. NOT to be confused with the Minute Maid lemonade sold by the street vendors on Main street.

Also on the cruise line (leaving on 10/9/04), the chef will call you ahead time to discuss the ingredients to find meals that fit within allergy restrictions.

You are not alone. We all fall off the wagon, especially on vacations. We all thought we learned the lesson: no exceptions to the diet, regardless. However, we all fall off again in the future and pay the price.

You can do it. Have that Disney experience and great vacation without the artficial colors, flavors and preservatives. If you need help, check out the Feingold Organization. There is also a yahoo chat board for people interested in learning more about Feingold. We have been members for over 6 years. Couldn't do it without it.

A fellow "No more ritalin" pirate
~endkaos

 

[endkaos]

This is slightly off-topic, but my son's highly esteemed Developmental Pediatrician said to me, "Sometimes behaviors cannot be changed by medication. Some behaviors you are just going to have to accept that there is no medication for."

That can seem hopeless, but it is also empowering. You just have to say, "You know, this is the way my kid is and I have done everything I can to help him and it isn't going to change. This is just the way it is and I will no longer resent my child for being this way." Welcome to the rollercoaster ride of an ASD kid.

 

[JESW]

Ah...I feel your pain - really, I do. I am the mother of a 9 year old (10 in November) son with Aspergers. He was diagnosed earlier this year after many years of us knowing that something was wrong but not knowing what. In 3rd grade he started having real problems in school and it was recommended to us that we have him evaluated. We were a family in trouble (we also have a DD5) and had to reach out to the school for help. We were fortunate that DS had a wonderful teacher who would do anything to help - we also liked the school psychologist who did the evaluation. DS also has a high IQ but will have major meltdowns during homework or over other small issues.

Our DS is also on Abilify (started Memorial Day weekend) and it has made a BIG difference. We were so against medicating him but it got to the point that we had to do SOMETHING. DH has a very stressful job and he was coming home every night to a nightmare. It got to the point where he was seeing a psychologist to help HIM. (I strongly suspect that DH has Aspergers also but thats another story...)

Our son isnt violent to other people - but he can be to himself. At school when he got frustrated he would bang his head on his desk or hit himself. He doesnt like change or surprises. One morning I was driving him to school (the bus was too much for him) and they had a field trip that day. He did not want to go and got himself in such a rage and was flailing around that he got the seatbelt twisted all over himself. I could not get him out so I had to take him to the police/fire station and one police officer and two firemen had to take the seat belt apart to get him loose.

Another day in school he got so upset he was under his desk and his teacher couldnt restrain him so she had to call the principal to help.

Before medication he would hide in his bed between his matress and box spring because he didnt want to go to school. It was so hard to listen to my then 8 year old saying over and over again that he just wanted to die. The outburst would come out of the strangest things. - very unpredictable. We had to leave many restaurants because of them. One time he totally flipped out when they brought his pasta (sauce on the side) with a sprig of green stuff on top.

Shirts couldnt have tags...socks couldnt have seams...he eats very few things. I dont think we have a dye problem since he doesnt eat much!

He hyper-focuses on one thing at a time - its been Pokemon for a couple of years. It has also been battlebots, pencils and legos.

The end of 3rd grade he got an ISP (Instructional Support Plan) and that allows him academic counseling and regular counseling (one-on-one and with a group for social interaction) He also has the option of going to the counselors office if/when things get too tough for him. Monday mornings are a nightmare - still. Last week DH had to physically put him on the bus and then call the school to warn his teacher. When he got there they were ready and he was able to go to the counselors office to calm down. I cant say enough about our school system and how they have helped him. This year (4th grade) he also has a wonderful teacher who is very tuned in to him. We have talked on the phone and in person...one morning DH had to drive DS in (he kept saying he wasnt going to school because he hadnt done his homework) and he got to talk with her. We also e-mail. I am basically a shy person but I have had to become more outgoing because of our child. I need to know his teachers and I need to know whats going on.

DS also sees a psychologist (the one who did the evaluation) every two or three weeks. He also sees a psychaitrist to monitor the Abilify. Imagine that...my son is only 9 and he already goes to therapy....

Our sons condition put a major strain on our marriage. For several years it was not good - especially when we didnt know what was going on. In the last couple of years - especially this last one - DH and I have become closer than ever in our 17 years of marriage. We are a team now and it feels good. We also have another child to take care of and her life has been affected greatly due to her brother. He can be so kind and affectionate - but he can also be so mean to her - saying how much he hates her and so forth. Its tough. But she is also a tough little girl and loves her big brother - she is the best thing we could have done for him.

Disney is our saving grace. We have gone many times over the years and our upcoming trip will be DSs 13th trip and DDs 11th. It is a familar place for all of us and now the kids decide what we do, where we go, what we eat, etc. Its great to have them in with the planning. Our last trip in June was our first trip with DS on medication and it was the best trip ever. He was able to tell us when he was tired and needed a break - before he would just have a fit and drop to the ground. He is learning to communicate better.

Life is not perfect....but its gotten better. DS will always have Aspergers and we need to know how to help him live with it. I am a SAHM and many times I have beaten myself up over things. I am not the most patient person and I have lost my cool with that kid many times. I feel like I fail him so often - but I keep trying! It can be so hard. But he is a very affectionate kid and always wants to sit with us, give hugs, kisses, etc. After a blowup he feels especially bad. Now that he is older he is able to talk with us more - even he doesnt know why he gets upset sometimes. Sigh.

Just wanted to let you know that you are not alone. I dont judge kids any more as I know there is often more to them that meets the eye.

Hang in there!!

Jill...whose apostrophe key is still broken....

 

[Laurabearz]

(((((((((((((hugs))))))))))))))

 

[Mel6197]

Compleatly about Meltdowns!!

I have a Autistic daughter who is 7 years old.. Well last year I followed all the "rules" to taking her to Disney.. We learned our lessons from the year before.. Slow down, Pool time, Following her lead etc.. To make this trip great.. And boy was it a GREAT trip, not a meltdown, yes a few screams here and there, and pulling her Bathing suit down at the pool RUNNING to the bathroom, etc All things I dont even think twice about...Well our last day at the parks (Magic Kingdom) I kinda went INSANE.. There were No lines, and we went on a RIDE Frenzy.. We ran on at least 8 rides in under a hour.. Having a great time.. Well Boy did I mess up.. To much for her, to much stimulation..Etc.. So for the next 45 min she sat in the stroller facing the wall (less visual Stimulation) Screaming at the TOP of her Lungs in Froniter Land.. Boy for those 45 min I got every look you can imagine..
Not fun..

So for our Next trip only 26 days away.. I will need to keep remining myself of the "rules" and this time I WILL FOLLOW them!!!..

 

[pw2pp]

I just want to applaud all of you who have children with special needs. Raising kids can be so difficult anyway and to have a special needs child must make the job even harder still.

 

[CarolA]

I have NO problem with the OPs child and thier special needs.

That said QUIT cooking in your room! I DO NOT want to smell your nasty food.

You want us all to be understanding of your child, but you don't seem to want to be as considerate to your fellow guests! Cooking smells up the rooms near you and your room. People could have allergies. So treat us as you want to be treated.

 

[Disney1fan2002]

Originally posted by ladydancer
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".

Hi Ladydancer....

I wanted to let you in on a secret about WDW dining, in case you didn't already know, because I see you will be there in a few days. Almost EVERY restaraunt in Disney has Chicken and fries or MAc and cheese available for the kids even if it is not on the menu. They do not advertise this fact for some reason, and I think it is because people would automatically order it for their kids all the time. But for the difficult picky eaters, you can just ask you server if mac and cheese is available(and more than likely it will be) Your GS will be so happy!

Have fun on your trip, and enjoy the mac and cheese even if it NOT on the menu!

 

[Disney1fan2002]

I do not have a child with special needs, but I wanted to thank you all for sharing your stories. Because I WAS one of those judgmental parents if I saw a child having a tantrum. The kid to me was a brat, and if he were my kid.........

Now, I will be more understanding, and think maybe there is a reason the child is acting like that.

My friend has a 19yo autistic nephew. He went to WDW for the first time a few months ago. My friends sister could not believe how WONDERFUL Disney was in helping her with her son. They got a special pass that allowed them to skip waiting in lines (he gets very aggitated in stressful situations, and a 30 minute wait among strangers would of been VERY stressful. There was more that Disney went above and beyond, and she could not say enough about it. It was the first family vacation they took where by the end they wished they had stayed home.