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

[disneygal66]

I totally understand what you are going through. My dS 6 is ASD and my DS 11 is ADHD, Anxiety and NVLD. I have just the opposite with my older one trying to be the boss and it doesn't work. MY DS 6 is transitioning from Preschool (special needs) to a regular KDG classroom and it has been HARD!! Today he punched a classmate and screamed and cried the whole morning. It is getting so bad at home too. I think the best thing you can do is talk to your therapist or case manager. That is what they are there for! I hope you can get your money back for AP's and that you get the help you and your family need to go through all this!

 

[dopeynme]

hi! I can't imagine how difficult it is for you and your family. I am a special education teacher and have worked with students wh have autism, tho' not much experience with Asperger's Still there are several things you can do to help things improve for all:

1. Ask at school for a Functional Behavior Assessment. It will help determine the cause of the behavior. You can't start figuring out how to prevent something if you don't know the cause. There may be a lot of things that you can do as antecedents to prevent the aggression. One previous poster mentioned social stories (look up Carol Gray, she invented them and has lots of research to supprt their use). There may be other simple things that you can do to support your son once you know what the triggers are. (e.g. if you find that he has outbursts during transitions in activity, you can give a couple of verbal warnings, use a countdown timer etc. If he has difficulty with changes in the routine, you could use a picture schedule, show him the change on the schedule, etc). He and you need a behavior support plan to help prevent the behaviors and manage them safely when they do occur.
2. Find out about in-home services. In PA, there is something called Wrap-Around service, part of MH field. (Not sure if it is national?) There are behavior specialists and 1;1 aides that might be able to come into your home (maybe 12 hours per week). They can help develop the behavior plan and demonstrate how to carry it out, so you and your wife can be consistent at home (Incredibly tough for families because home life simply does not have the structure that the school day does).
3. Ask about respite services as well, so you & your wife can get a well-deserved vacation and know that your son is safe and well cared for.
4. Find counseling support for your whole family. You are in a really difficult situation and it's natural to find it impacting all of you.

I hope things get better for your family very soon. Hang in there and feel free to PM if there is anything I can do or if "talking" helps.

 

[Luv Bunnies]

I can totally emphathize with you! Our son is 11 and has been diagnosed with Asperger's as well. It can be maddening, bewildering and very stressful!

I can tell from your message that you're desperate for answers and you can see by all the posts that many people are or have been where you are now!

My best advice is to get some professional help for your son and your family. You mentioned that he already sees a therapist. If that person isn't helping, don't hesitate to try another one. You may have to try several before you and your son really click with one but a good therapist can make all the difference in the world! We started seeing a therapist in the spring and already we've learned several techniques that we've used at home and passed on to his classroom teacher. I've also learned (and am trying to teach my husband) to be much more patient and consistent when dealing with our son. Verbal scolding goes in one ear and out the other. We've found other ways to get his attention and get him to focus on the issue at hand. In return, he's been able to better manage his behavior and he seems like a much happier kid.

I think the most important thing the therapist has taught us is never to give in to his outbursts and whining. If he asks for something or objects to something in a reasonable manner, we can consider a compromise. The minute he escalates into a tantrum, we will never, ever give in. It's so understandable to want to give in (face it, we've all done). Sometimes you just want to say, "Fine, you don't have to take a shower just stop yelling!" But that just teaches him that his tantrums will help him win! We're learned that if we have to physically lead him up the stairs and put him in the shower, then that's what we will do. Guess what? The tantrums decreased dramatically within just a few weeks when he realized they no longer worked. There was a period of revolt where the tantrums increased (just like the therapist said they would) but then they dropped off dramatically.

These are the kinds of techniques that I have found so valuable in dealing with my son. We are now facing puberty and I know it will be a challenge. But, we are arming ourselves with information now so that we hopefully we can deal with whatever comes along.

Also, don't be afraid to try meds again. You need a good doctor with experience in meds for kids with spectrum disorders. There are literally hundreds of meds and combinations and you just need to find the right one.

I work as a special ed teaching assistant and we see frustrated families all the time. It's amazing how a few behavior management techniques applied consistently can make so much difference.

Does your town have a parents support network? You may be able to find a group that offers resources, referrals and a good place for parents to meet each other and vent. You and your wife would probably benefit from talking to other parents and sharing your experiences.

I have to agree with some of the other posters that physical punishment isn't the way to go. Your son processes information differently than most people. It should make sense that a spanking would deter him from repeating a behavior, but he doesn't necessarily see it that way. For him, a spanking shows him that it's OK to hit someone who annoys you. And he will be likely to emulate the angry, raised voices that he hears because he has a hard time deciding what behavior is appropriate in different situations.

Please hang in there and keep plugging away! You can help your son better manage some of his behaviors. We are a few years ahead of you and we're proof that it can be done! We've waited this long to take our kids to WDW because we wanted to make sure that both would be old enough and in a position to appreciate it. We're pretty confident that they will both be able to handle it (11 & 8 years old) and that the older guy is in a good place.

Good luck!

 

[SelfEmployedDebtFree]

Thanks for all the support. Weve read every one. A few I didnt agree on, but most 98% of the replys were GREAT! No comments on the ones I didnt agree with; I dont want to start an off topic war.

Disneydenisel... you sound JUST LIKE my wife!!!

I think the structure comments are the best. He seems to thrive off structure. He does really well at school. (Autistic classes) and does better during school weeks that are full. If school is out for one day that week he's bad. Darn! Why us??? We are SOOOOO unstructured!!! I work emergency hours, day and night. Some weeks no work, others (freezes) I work 120 hours a week. The whole structure issue is a sore spot. I like doing things sparratically and spontaniously. Whenever and whatever. We play everything by ear. I guess he's gotta help us with that.

Its kinda funny really. We put him in public school for 2 reasons; ONE because the wife couldnt home school him as she wanted, and TWO to "shut up" the family from nagging. I said "I give them ONE DAY! They'll be calling us to come and get him". The first day they had to have 4 teachers to hold him in a padded cell. He was that enraged. I said "Haha. I guess Im right.... They'll be saying we cant do it by tomorrow" the next day he was bad, but not AS bad, then within a week he was LOVING school. Now he cant stand to miss school. He even made the statement once on vacation how he missed school. Guess I lost that one. But school is structured. Home isnt. I need to work on that one.

 

[DisneyDork712]

I'm afraid I can't offer any advice - I don't have any kids at all... Yet! I just wanted to tell you good luck with whatever you decide to do! I really hope everything works out great for you guys!

Oh! And here's some pixie dust for you!!

 

[mbb]

.....But school is structured. ...

And the days when school isn't structured - for our 2 kids, both ASD - were terrible. Christmas concerts, special assemblies, fire drills... They're not in any kind of specialized setting.

Much better now, but yes, that day in, day out routine is critical And if something is going to change, school has finally learned what we had been trying to communicate all along - the boys just need to be prepared. Even in the middle of a fire drill, out came the picture schedules, and the our kids were so much better.

Hope you find ways to inplement that structure for all of you at home

 

[Talking Hands]

I think the structure comments are the best. He seems to thrive off structure. He does really well at school. (Autistic classes) and does better during school weeks that are full. If school is out for one day that week he's bad. Darn! Why us??? We are SOOOOO unstructured!!! I work emergency hours, day and night. Some weeks no work, others (freezes) I work 120 hours a week. The whole structure issue is a sore spot. I like doing things sparratically and spontaniously. Whenever and whatever. We play everything by ear. I guess he's gotta help us with that.

Its kinda funny really. We put him in public school for 2 reasons; ONE because the wife couldnt home school him as she wanted, and TWO to "shut up" the family from nagging. I said "I give them ONE DAY! They'll be calling us to come and get him". The first day they had to have 4 teachers to hold him in a padded cell. He was that enraged. I said "Haha. I guess Im right.... They'll be saying we cant do it by tomorrow" the next day he was bad, but not AS bad, then within a week he was LOVING school. Now he cant stand to miss school. He even made the statement once on vacation how he missed school. Guess I lost that one. But school is structured. Home isnt. I need to work on that one.

Trust me the day after a school day off is pretty bad with autistic kids. Teachers just expect it and work on getting them bad on schedule. Also any unusual activities have to explained and worked on well in advance. Fire drills are really hard because of the nature can't be announced to the students but frequently the SPED teachers are warned so they can be ready. Not of the time though. Just that it will happen on that day. Also what you were saying about your son's first days of school are pretty much the norm and teachers expect and deal with it knowing that it gets better after a week or two as the child gets used to the routine.
One thing you can do is make a schedule of what will normally happen in your sons life. PECs cards on a strip of velco and as the activity is done he removes it and puts it away in a box. This way he sees what is coming next. No times. Just what comes next. With the strip the order can be changed as needed or different things can be on the strip for different days. Then all you have to do is tell him to check his schedule when it is time to change activities.

 

[disneydenisel]

Disneydenisel... you sound JUST LIKE my wife!!!

A long lost twin, maybe ?!

Best of luck on the structure thing. It has done a lot to help calm our kids. Yeah, we can't really ever be spontaneous anymore, but I can see glimpses of it every now and then, and someday we will get there.

 

[pilgrimage]

No suggestions, just sending you encouraging thoughts
and hopes that it gets better. I wish I could send you and
your wife a 5 hour dinner/movie break with babysitter included--
you deserve a little quiet time.

God bless.

 

[KirstenB]

Gosh, your post is so humbling. Our dd's don't have any ASD, just normal kids. So I don't have any advice, just much empathy. As a substitute teacher, I often subbed for special ed classes, and have done longterm subbing for 2 autistic guys, one verbal, one not yet.

One thought, I can appreciate how hard it is to get any time off from your son. Are there any special ed teacher's assistants who might be willing to babysit for the extra money? I know getting a sitter must be a huge challenge, but maybe this is an option? Honestly, if I lived near you, I'd babysit!

My husband and I are also high school sweethearts, you all are very lucky to have each other.

Finally one last (I promise) thought. My SIL has schizophrenia. I know this is not autism. But, she was dangerous to herself and others. My inlaws lived in Pennsylvania, and she was treated in a facility called Devereaux (sp?). She went to live there in high school, and it made a huge difference. She is grown, with her own children, and able to hold a job.

 

[hmmchowell]

God bless you. I will keep you in my prayers.

 

[annie1995]

 

[stenickar]

Just read an article in the paper this week where Risperdal has been approved for helping to decrease aggression in kids with autism. My 10 you has been on it for about 3 years. We originally started it to help him get to sleep at night. We quickly noticed a decrease in aggression and an overall sense of calmness. He stills has times of hitting, but he is non verbal, and it is usually done in response to being told something he didn't want to hear. Hope this helps.

 

[doubletrouble_vb]

Dont have kids so my advice is worthless. But I would look extensively at diet and allergens. I do know someone who had a lot of success with keeping her son on a pretty natural diet (vegetables and fruits for snacks) but she started very early. A natural diet would do well by the rest of the family too.

After a visit to an allergist and a nutritionist I might try the behaviour modification ideas and a visit to a neurologist with a goal of getting low doses of medication. If you do, go to drug.com to read everything you can about the medication before getting the prescription filled, that way you know what to look for.

And if you do go to Disney again (because of the AP's) consider getting a Family suite at Allstars, or a DVC one bedroom. That way you can control more of the meals by using the in room facilities as well as give the family the ability to get away from each other. And maybe limit the time in the parks to 4 to 6 hours...that's the best use of an AP.

 

[doccath]

I have a 12 y/o son who has asbergers also. I completely understand the frustration that you have. We did the Disney Magic this summer and I wanted to jump overboard at times. He had my best friend in tears at one point. However, I did start biofeedback with him and it has help tone down the anxiety and frustration. This is a disease where the intensity needs to be controlled. Most asberger's kids are extremely frustrated. THey don't understand social cues, they usually are very smart and they understand they don't fit in. THey frustration and anxiety these kids have fuel their anger, which is what comes across. I have found when you tone down the frustration and anger, you can get that 5 sec pause that the child needs to listen to any of the behavior training clues given to him.
I am having some success with this. We are a long way from the promised land but for the first time since this diagnosis I think we may get there.

 

[disneylm]

I am the mother of a 4 and 1/2 year old autistic boy and had a experience at WDW somewhat similar to yours before he was actually diagnosed. My family and I go to Disney twice a year so the next time I went I did lots of research. I brought a letter from his doctor with his diagnosis and went to guest relations (you can go at any of the theme parks). We got a card to use to go on the rides and for when we got pictures taken at the parks. It explains to employees that your child has a disability and lets you avoid some of the lines. My son can't handle all of the lights and noises in the lines for the rides. It made a HUGE impact on our trip!!! We still had melt downs and tantrums, which consist of hitting, kicking and biting but it was a BIG improvement.

I have tried all kinds of things to help with my sons aggression and tantrums and I also do not feel like medication is always needed. But here are some things that helped him. I got him into cranial sacral therapy, which made a big improvement with the agression and I also looked at his diet and kept a journal of what he ate (he has a very limited diet). I realized that soem stuff made him more agressive and he had more tantrums. I ended up taking him off of milk and putting him on rice milk instead. These things did not make the melt downs go away but made a BIG impact on his behaviors.

I hope things get better I know how difficult things can get and you and your family are in my thoughts!!

 

[Belle1997]

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 !!!!

Also the 2nd week in January is great. This will not cut down on the violence issue but may help with the anxiety.

 

[billwendy]

hi - i totally feel for you, your wife, your daughter and your son. i am an occupational therapist at a childrens hospital, and have worked with many kids with ASD - all of them VERY different!!! aside from medication, i was wondering if your child had ever had a sensory integration evaluation? this may help point area's of overstimulation that may not be recognized in the typical way - an OT could help you with a "sensory diet" which isnt a food diet, but a diet of activities to help modulate your son's sensory system. he may have a modulation disorder (modulation is the brains ability to regulate level's of alertness in the body) which would be why he has wide swings of behavior.
i was also wondering if you had ever tried the interactive metronome program? this is a computer based program which is sometimes done in 15 , 1 hour sessions (2-3x/week) to help to retrain the timing in the brain. they have a great website and if you do a search for it, you will find it. i have seen wonderful improvements in ability to self control from many of my kiddo's - parents have reported multitudes of other widely varied improvements from class participation, to peer interaction, to eye contact, to improved homework time to improved handwriting, swimming and eye hand coordination......its really cool!!! its not a medication and its non invasive, so may be worth a try!!! you could find somebody in your area from their website! let me know if you have any questions,,,,i really do feel for you guys,,,,God Bless,Wendy

 

[terri01p]

I have no advise ( so why post ) well I just wanted to say your post really touched my heart, I wish there was something I could say to just make everything ok. My only problem is my dd can't stay healthy enough to do anything in the parks, we pay and end up having to go back to the room 2 hours later. I wish they made half a day tickets for special need children, I have spend out a mint on a couple of hours in the park with her. GOD SPEED to you.

 

[welovedis]

Well, It was just horrible. I just wanted to crawl in a hole and cover myself with 6 feet of dirt. A bad thing to say about a magical vacation. I dont really expect anyone to understand. My 8 year old son can be such a sweet child. As we pulled out of the driveway for the 10.5 hour drive from NC, the bickering began. My daughter is 4. She's NOT Autistic, but her brother is, and she might as well be, because she looks up to him and mimmicks his every gesture. My son's official diagnosis is asperger's Syndrome, but its much worse than that. He chants loudly, and is EXCESSIVELY rebellious. He disobeys continually. He hits, kicks, screams, and pitches fits when any little thing dont go his way. He's obsessed with "recycling"... he stuffs his shoes with used paper towels, napkins, candy wrappers, and such. If you throw away a paper cup he used, or a straw, or even a TWIG or piece of mulch, expect a full blown fit. (Complete with the usual screams {almost always directed in my general direction} of such "You hate me!" "You are so rude to all of us!" "Why do you BEAT ME so much???" "Why cant you just be nice!" "You dont belong in this family!!!")
I'd like to take a second here and defend myself. I DO believe in spanking my children. I do NOT beat them. I use my hand or one of the large Lowes paint sticks to the butt, and only when ABSOLUTELY necessary. I do NOT use a dropcord, wire, 2X4, or baseball bat as one would imagine by listening to my loving son (sarcasm). The problem is his condition, not the discipline or lack of it. That subject is kinda funny. When he pitches a fit in line, 40% are "probably... Im guessing" thinking "That kid needs a good paddling! If he were MY child I'd....." then another 40% are gazing at me just WAITING for me to do SOMETHING, but NOT spank him by any means. If I DID spank him they would be far too eager to get security. (It HAS happened before, and more than once) and the rest are trying to just mind their own business and ignore it. Those are the ones I like, and those are the ones I appreciate. you cant please everyone. You know the old cliche... Opinions are like...

Heres one small example of the MANY things that happened this past week at Disney.
My son threatened to slap a lady in the face because she was "taking a picture of him". The lady (more patient and understanding than most are) said "Sweety, Im not taking a picture of you; Im taking it of the countries". My son screamed at her "Yes you are! Liar! etc etc"
He is uncontrollable. We tried meds once. They caused so MANY health problems. Gorging, excessive weight gain, kidney failure, depression, paranoia, and ticks are among a few of them. I really dont want to go the meds route again. I did that. It sucked. It took us 4 months to get him OFF the darn things. He did a 180 improvement upon removal. The rage and anger is only within the last year or so, but it seems to get worse and worse. His paranoia is getting much worse as well. He also throws fits about things that he misunderstands. He hears a word, or part of a sentence, and assumes his version of what was said, and blows up over it.
He ruined our whole trip. We fought each other all week. My wife and I got into a nice little fight, and split up for a few hours to cool down. Understand, my wife is my high school sweetheart and weve been married faithfully for 14 years. We rarely EVER fight. We get along so well. Stress can do amazing things to people.
The park:
The crowds were thick, the humidity was a bit high, and it was hot. The quality of the crowds wasnt the usual either. The food and wine festival brought hordes of roudy people laughing loudly and spilling beer. The stench of beer and cigarette smoke was far worse than I have EVER experienced at WDW. There were SO many people smoking everywhere they went, reguardless. My son hates smoke, and this angered him, (and the rest of us as well) even more.
All this led to more frustration.
On one trip several years ago (Ive mentioned this before) my son kicked my wife in the shin till she was bleeding. (He was 6 at the time, and they were in the ladies room. Hes a BIG boy, and she's not that strong. She has a hard time controlling him. This trip was worse.
Now, I try not to end with all negativity, so I'll throw in some happiness.
1) Were home!
2) Its over!
3) We DID have lots of fun as well. We really liked the fun at MNSSHP. The crowds were bad, but the fun was everywhere. I wouldnt do it again, just because it was SOOOOOOOOOO crowded, but it was a VERY fun experience.
4) Boma was AWESOME! (Though my son refused to eat ANYTHING but sweets, and got diarrhea and had a VERY BAD, catergory 10 accident that ruined every stitch of clothes he was wearing, and he stank up the whole bus, and ruined our plans of doing MK that night... And I had to buy him new (EXPENSIVE!!!) clothes at MK, and had to clean up the stall he... well. you get the picture... point made. Too much information!
5) We rode EE 5 times in a row!!! The yeti is COOL!
6) We rode Haunted Mansion 4 times in a row! We spotted a hidden mickey on a staff a ghost in a coffin is holding at the end of the ride on the right side. Definately the single best hidden mickey ive seen yet.
7) we had fun dressing up at MNSSHP. The wife went as Corpse Bride, I as a Pirate, my son as Sora (Kingdom Hearts) and DD as Sleeping B.
8) people seemed much more understanding to my son's condition this trip EVEN THOUGH he acted far worse than usual. The Autistic Buttons from buttonsandmore.com REALLY are a lifesaver!!! Dont even TRY to say its wrong to label them till youve lived a day in MY shoes with a hateful child.
Tomorrow we are planning to try to cancel our annual passes. It was THAT bad. We bought them last week. I hope maybe they will understand. Were not going ANYWHERE till he's under control. I expect him to make us miserable from time to time, but its not fair to others when he makes them miserable too. Its also very embarassing.
So why did I post this? Desperation. "No man is an Island." I need help with him. Any suggestions from those who even VAGUELY KNOW WHAT ITS LIKE are appreciated. Please dont flame me. Ive been through enough. I came here for FRIENDLY advice and maybe some pixie dust.

First, I just want to say that you've obviously come to the right place to post, I don't think anyone here is going to stand in judgement of the things you are doing and we don't judge your son's behavior at all. Many of us have walked a day, week, month or years in your shoes.

There are 2 things that you're probably not going to like about my post, so I'd like to get them out of the way first. Hitting a special needs child (or any child)that has anger/rage issues is likely to make the situation worse and impede any chance at a cooldown because they are now embarrased and hurt in addition to whatever they were feeling prior to the physical confrontation.

Second, your child is not hateful. He may behave hatefully toward you, your family & complete strangers, but it is because he has not yet learned the skills he needs to cope with his life. Maybe meds are in order, as others have mentioned, and maybe he just needs more structure and a sense that he can rely on you to help him and not just be embarrased by him.

I will jump off the high horse now and hope that you take my comments in the helpful manner I intended. I cannot fathom having to expose my child to as many doctors and specialist as you have mentioned, my son's diagnosis was very simple (1 doctor after a teacher saw AS tendencies) and our IEP was implemented ASAP.

Your son seems to really be crying out for help and I hope that you can set aside your anger and frustration with him to see what your school district, your doctors and your psychologists can do for him. Some AS children respond better to a cocktail of meds, depending on their issues. Others, like my son, don't need meds but do need to be on a strict schedule as well as have "que" cards so that he knows what to do when the unexpected does happen.

I don't think you can do much to cancel your APs unfortunately, but it sounds like you managed to glean some fun out of your trip. Hoping that you & your wife can help your son work through his problems and come out happy and healthier in the long run!