AUTISM RUINED MY TRIP! Anger, rage, paranoia. Please help.

[Taratink]

Yikes! I 've been there. My DS7 was just diagnosed with AS. It has been so hard and my son is highly functioning. We have tried a few drugs and he is now on Tenex. He is now doing great. He is less aggresive and less moody. It helps a lot just to take the edge off. Thinga are not mear perfect but I can deal with the way he is now. I do not judge how you feel. I understand. I am sure that you are doing your best. You are not alone. I wish you and your family well. Our last WDW trip was rough too. Hang in there.
Tara

 

[missypie]

I'm sure the answer is yes, but I have to ask: Have you read a lot about Asperger's/autism? Do you know "the rules"? (their rules) Rules such as "what is begun must be completed" and "no surprises."

DS used to "rage" when he was younger. Once we learned the rules, the rage decreased. For example, we would be ready to go somewhere and just flip off the TV. That would send DS into a rage. We learned that unless the house is on fire, we certainly have the time to let him finish watching the 30 second commercial that he is so absorbed in. If he was starting to watch a TV show that I knew he wouldn't be able to finish, I'd warn him in advance.

DS grew out of his rages, and his were never as bad as you describe. If I were you, I'd seek professional help.

I would also totally cut out theme park trips until his behavior changes. Not even a trip to Busch Gardens. Theme parks are fun but they can also be stressful and provoke LOTS of tension. DH and I had one of our worst fights ever at Six Flags. Aspies and other kids on the autism spectrum often like peace and quiet, not a lot of change, no surprises, no crowds, no loud noises, no chaos, no one touching them, etc. etc. That is the OPPOSITE of a theme park vacation. Maybe rent a condo on the beach next time and have a very low key trip.

 

[SelfEmployedDebtFree]

WOW! This thread is still going!!! Sorry, business has been VERY good.

Wow sorry to hear how tough it was. The only suggestion I would make is to check out when the lowest crowds are. We went the last week of September and there was no more than 5 to 10 minute waits. However when we went back after our cruise on October 7th it was nuts way to crowded and my Dh does not do well in crowds. Weill never go during food and wine again !!!!

I SOOOOOOOOOOOOOO totally agree!!! If I had got there just ONE WEEK earlier it would probably have been much better. Last year we went a week earlier in Sept and it was a GHOSTTOWN! I LOVED it!!! This trip was WAY too crowded.

Rules of autism... fully aware. For what its worth... Ive done so much research from doctors to books to classes to specialists that I could write a book on the subject myself! BUT sometimes you get SO involved that you forget what you have learned. You guys have been a TREMENDOUS help! I have read a LOT of things I had already known but had forgotten about. It brings up old ideas I can try new again. Thats helpful!

Sensory Integration YES!!!! He DEFINATELY has been diagnosed as SENSORY!!! That was his first diagnosis. Too much stimuli is always one of our concerns. On a previous trip, several years ago, something odd happened:
He didnt seem to "understand" anything that was happening around him. He was just "zoned out". No smiles, no laughter, just kinda braindead. THEN, about a week later... WOW! We just went to Disney!!! It was DISNEY EVERYTHING! It was a stimuli overload and his brain took a week to catch up!!! Fascinating really if you think about it.

Disney is wanting us to fax them the APs to see what they can do for us. Im gonna do that tomorrow. Were gonna limit trips to easy, mild ones for the time being. Oh, and Chuck E Cheese! The wife and I get the grandprize on Skeeball 4-5 times each everytime we go!!! People get so mad at us! We go there a lot too. its one of his favorite places. The strange thing is we rarely ever eat there. just enjoy the free drinks (we have the lifetime refill mugs) and buy tokens for games.
As far as me hating him, that was anger and stress talking. Hes my son of course I love him! And as far as hitting, he's 100 pounds. When he punches me I punch him back! He needs to know it hurts! BUT before you all get stressed out over that, read this closely... we pick a LOT. We pick with physical strength; pushing, wrestling, HITTING, hi-5s, karate moves, low sweep kicks, and such. The therapist said he likes deep pressure and she actually encourages that style of "picking". He loves it. So its not like abuse, its more like picking to him. We wrestle so much that when we get into REAL scenarios, he dont take it so seriously, but he knows the difference. Its hard to explain, but our #1 form of discipline is grounding him from the computer for minutes or hours. That works much better too. Most of our hitting is the harder and harder type. He hits me, I hit him (arm) he hits me harder, I hit him harder. in a few minutes it starts to hurt, and he moves on, realizing hes losing this battle. The "hitting game" makes him realize that his hitting causes pain. He got some pressure he likes, and he cools down and we resume our lives, with both of us smiling. He knows that he is NEVER allowed to hit his mother, so thats not an issue, but he knows deep down that I love to pick with him. As most of you have said, they are all different. We do what works for us. Most of the time its all good, this was just one of those weeks when our usual tactics didnt work.
You can reread that with a smile and you might get it, or suspect the worse and you'll never get it. Its all in how you read it.

Now that you all know that we GROUND HIM FROM THE COMPUTER for punishment... maybe we can move away from that topic. Its easy to read something and misconschiew whats being said. Perhaps I worded my original post wrong there.

As far as meds. Sorry, but I'm still 100% opposed to meds. I tried that. It caused SO many health problems that I'll NEVER do that again. I never wanted to try it in the first place, but once we tried it, we gave it 100%, and it was a disaster. On www.ritalindeath.com there are statistics about the number of children that have died on ritalin alone. You say meds help. I say those parents have dead children. If theres a 1 in 100 chance of death... DEATH... I say I'll go another route. Everyone is entitled to their opinion, and thats mine. Ive gotten several private messages from different people who are also opposed to meds. So I'm not alone on that view.
I'll quote my son's previous doctor here. He said (this is VERY close to his exact words. I appreciate his honesty):
"Your desperate,... they (the children) are guiney pigs,... were just legalized pill pushers,... and NONE of these medications are made for children. Most are off label, and NONE are specifically for the children with Autism. Many of these meds are so new that we barely know the short term side effects, and we certainly cant tell you the long term side effects on most of them because they havent been used long enough yet." That is almost word for word what he said. Sorry, but thats not good enough for me. Besides, hes (still) been a perfect angel ever since he got back. Hes actually been MUCH MUCH better than he was BEFORE we left! Maybe Disney DID help him somehow!!!

I also hope that someone else who might be going through a similiar experience with an autistic child might have read something that helped you too. If you did feel free to drop a line here and let us all know. This isnt just about me and mine; its about you and yours too. I hope someone else can use something posted here.
Now remember, a lot of what you see is in how you see it. I didnt intend to offend anyone. Just replying to what has been suggested. So far Ive enjoyed this thread. its been a sigh of relief.

 

[missypie]

Wow-sounds like you are a very physically agressive family, with all the wrestling. Don't know if you can un-ring that bell, but if I were you I'd immediately stop all forms of wrestling/physical "play."

 

[melomouse]

SEDF - (I have the first part, not the second, and an Asperger's son who will be 15 in January)

I've followed your thread for awhile. I know your rage, frustration, loss and helplessness.

My son is on one med right now because the OCD features took on a life of their own after his major back surgery this summer. We had been on almost everything for short periods of time. You are in the very tough years - things are better now - but some days it seems like I've traded one set of struggles for another.

He's best at WDW - but we always go off season. I've only used a GAC these last 2 trips.

Re: the "hitting "game"": You are on the right track in theory, but not in practice. He has to have the 1-10 scale to go with harder touches, so he can learn more than "that hurts" from his dad. AS kids do NOT have the framework with which to understand. Sensory stimulation - picking as you call it - yes - but in a DIFFERENT context than hitting or teasing with dad. I taught my son this over the course of three weeks. All physical aggression in out house stopped after that.

Parents have a tremendous amount of power in training an AS child,but we have to be "ON" ourselves to implement that. I know that when I have no resources inside myself, I have absolutely nothing to give him. On those impossible occasions where his disability makes me feel totally crappy, I ask myself, "If YOU feel so rotten - geez - what is it like to be HIM right now?". Always kinda jerks me back to being more adult and "in charge" of myself - and him!

Good luck! You are in my prayers.

 

[DBC]

Boy, I hope things get better soon for you. Maybe I can offer a bit of hope.

Our first trip in 2002 with our then 8 year old autistic son was very challenging. He had some of the same issues you describe, though really not to the extent you had.

He has really become much easier to handle over the last few years. As a matter of fact, he (now 12) really isn't much trouble at all. We've come a long way from the days when we couldn't even take him to the grocery store because I couldn't handle the tantrums and the stares.

It was really putting a strain on our NT son (now 13) and ourselves.

Thankfully, he has grown out of that and is really a source of constant joy. We've been to Disney/US the last 2 years with nary an incident (well, except for the name calling stuff, he can't stop himself there when he feels he's been ill-used).

He is doing much better this year in school. He has had a 1-1 for years but still would go nuts when someone else was called on instead of him in class, if he couldn't be first in line, etc. There have been no such problems this year.

I guess what I'm trying to say is hang in there, things will hopefully get better. It's been a constant progression for our son. Every year has been better than the one before.

I know it's tough as hell and wish you the best.

 

[susieq76]

SEDF,

Hi- I've been reading your post- I'm NOT proposing I have answers (wish I did- I'd be God) but I do have some suggestions.

1) Next trip to Disney get a disable pass for him. I get one for DS ASD 4. He gets aggressive if forced to wait long peiods of time and it has been a life saver on trips. Bring a copy of his IEP.

2) Positive Reinforcement. This is one of the Biggest ABA rules. Punishment, hitting etc just doesn't really work with these kids. Try reinforcement when he is actually behaving. Pick a period of time (could be 15 minutes to start) where you can just devote 100% of attention to him and periodically reinforce him (edible, praise etc) when he is either speaking to you nicely or just behaiving appropriately. Don't get me wrong- my DS has a sticker board with #s of minutes on it. Every tantrum or serious deviation from typical behavior he has I remove a sticker. These represent minutes he can use the computer or TV or whatever the preffered activity is. At school my SEIT has a smaller version she holds in the palm of her hand. But the constant positive reinforcement (man it is a tough, time consuming PITA) is the only thing that has worked to completely extinguish several really stigmatizing behaviors.

3) Drugs are not the answer- I agree 100%- all they give you are zombie kids and don't truly address anything. What kind of classes do you have him in? Do they utilize the learning theory? Maybe one of his therapists can help you devise a serious plan to extiguish. Ignore the undesirable behavior unless it is physically dangerous is the common rule of thumb but all of us with a sibling know that you can not train a 4 yr old to ignore and they just make it worse by giving the ASD child reinforcement for his poor behavior.

Good Luck- hope it gets better for you & DS.

Sue

 

[4Pluto]

If you have the courage to go back to Disney for more, I've a couple of suggestions (from 4 years of visiting DL with a young man with severe brain damage--not autistic but sharing some of the same behavioral problems and seizures).

1. Get a disabled pass from guest relations. I had a letter from his doctor explaining his condition. If we had to wait in line, we'd never make it onto a single ride. While I tried other parks that said they had a similar policy, most ride attendants at other parks didn't really understand why we were "cutting" in line. Disney CMs are really good at understanding that not all disabilities come with wheelchairs or signs. And as strange as it feels to cut in line, to be honest, I'll bet we never made it on more than 8 or 10 rides in any single day.

2. Stay on the property. We went back to the hotel at least twice every day to swim and defrag.

3. Take days off. After two days at a park, we took a day at the beach and a day on a boat ride before returning for a last day in the park.

4. Take more adults with you if you can. We could trade off duties so that no one was emotionally exhausted and we could pull off stunts like having someone go ahead and get food and a table before we arrive at lunch. We also had more snack breaks and smaller meals.

5. Don't feel embarrassed. There are a lot of kids and young adults in the park with behavioral problems (not just bad behavior). You are definitely not alone.

 

[magic kingdom park]

Just my two cents I have a son 9 who is ASD, his behavior was very bad when he was 5-6 years old, he would constantly tantrum in public and yell for someone to help him if we were trying to get him out of the store or where ever we may be, I to was spanked when I was a child and I have no problem with it, and we started spanking, but his behavior only got worse, and we seen more and more anger from him and he wanted to hit us when things didn't go his way. We started seeing a family counselor and she explained that ASD children do not understand what a spank is, he then thinks this is how he is suppose to act when he percieves things are not going his way, that you should be spanked. We had to change our whole disicpline thing, we had to make him sit by his self in a quiet place, if he was very angry we would sit with him and hold his hands and arms and talk to him quietly until he calmed down, we explained to him what he was doing was wrong and he could not do that. My son is now 9 years old, and behavior problems are no more, I may have to tell him five times to stop something but no anger or tanturms do we have to deal. I will also add that my son is also adhd and he does take medicine for that, he also takes risperdol, for his obsessiveness. I also see you are from NC, have you tried Duke Hospital, they helped me alot now that we are pretty much under control, my son sees a developmental peditrican at Wake Forest. Best of Luck.

 

[Judy from Boise]

Just my 2 cents.......
It is certainly possible for your son to have dual diagnosis, and we do have medications with good solid track records for mental health problems.Please never say never.......

Also, does he get a good work up by a Pediatrician routinely to rule out things like lactose intolerance, GI reflux, chronic ear infections or Urinary tack infections....that could be causing acting out behavior, that is really based on physical pain?

I also agree that your son probable lacks the cognitive ability to frame/discriminate between "kidding around with dad hitting" vs any other hitting. Can you investigate other ways to provide the pressure he craves, and other ways to express physical affection?

I loved your comment about him "processing" the trip a week after you got back. Thats exactly what my DD did.......a nice benefit to having that camera in her brain!